The Hanna Family

2011-12-21T14:45:00.000-08:00

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion,
gentleness, and a deep loving concern. Beautiful people do not just happen." Elizabeth Kubler-Ross

This is a recent quote I stumbled on that really resonated with what I hope to become. I think we are so adjusted to what the world defines as beauty that we forget that the most "beautiful" people are those who have known hardship, sorrow, grief and the darkness that comes with it, and yet still they find a way out and a way to move on.

This has been a very difficult year. I wish that I could put it differently but to be honest, I would have to say it has just been plain hard. We have faced job loss, relocation, loss of value on home and multiple buyers along the way to negotiating a short sale (which looks to be lost all together at this time due to the poor organization of the bank we have been working with). We have faced continued health issues with the boys including RSV, pneumonia and the recent discovery that Jonah's hips are dislocated and will need intensive surgery, etc. My Mother's Parkinsons has worsened and this past fall she was in and out of hospitals a minimum of 3 times, we almost lost her to a rest home more than once. I admit, the pain of sadness, loss and even times resentment has been all to often familiar. But, I also would be remiss if I did not say that we have found God's tender mercies in our every day lives as well.

I still do not have a full understanding of the "why's" and "how's" and "where to now's"....but I do know that God loves me and my family. I am grateful for this knowledge and the reminder that the only things in life with value are the relationships you forge with those around you and the friendships and family that you nurture and keep. Truly, in the end, nothing else does or will matter.

I want to thank everyone who has prayed for us, fervently, and for each of you who continue to pray for us. We have been blessed by the power of prayer in many, many extraordinary situations. I have also found incredible missionary opportunities and moments of testimony as I am able to share with others that family does matter and that God wants all of his children, with or without special needs, to have a part of His Plan here on earth.

It saddens me that so many have given up on compassion and charity and think our situation to be lost. It just simply is not so! I have seen how the effort of one can change the attitude and heart of many, I have seen it in my own life and in the lives of my boys.

Do I always understand my own "walk with Job," as I have begun to call this period in life? No. No I do not. Sometimes I grieve that I am not the same person I was just a few years ago. I grieve the young woman I left behind. I grieve lost dreams. But I also know that God is omniscient, all-powerful and all-knowing. I look at the person I am now and I know, without any level of denial, I would not be who I am today. So yes, sometimes it is true, the greatest of changes must truly come at the greatest of costs but in the end...when you look at yourself and see that those around you mean so much more, that your relationships take priority and that you must completely submit yourself to God, how can you have regret?

I cannot.

So for this reason, during this holiday time, I wish to thank Him for having faith in my potential and for seeing that I would overcome all that was and is placed before me. I have so many days that I question his trust in me and I feel inadequate. Most days, in honesty, I feel inadequate but I am grateful that through this all he sees that I still have the Divine within.

So to all of you, I ask that we pray this next year to find the reason behind what He asks of us and to follow in faith, despite what the sacrifice may mean. I promise, with conviction, to do the same.

Merry Christmas to each of you. Thank you for your friendships and love.

2011-03-10T22:37:00.000-08:00

Time seems to pass too quickly and I find months pass before I find the time to update our family blog.

We have mostly survived the winter, aside from a recent hospitalization that finds Noah in the hospital with RSV. Jonah has started with symptoms so tomorrow I will take him in and have our pediatrician test him for RSV so we can keep an eye on him, hopefully we can avoid a hospital stay. Right now we are praying we can get Noah home in the next few days. Grandma Hanna has been in town helping with Jonah at home. I missed a Hawaii trip with the Langston family (thanks to Grandpa Langston) but Hawaii will always be there. Another time perhaps.

Exciting things include small steps of progress that Jonah has made. He now rolls everywhere on the floor which to some may seem marginal in way of something truly exciting but it is a massive accomplishment. He is so excited at his new skill and loves to roll around and find toys and get to Noah. We love to see his pride that he has accomplished something new and for a very challenged child with severe Cerebral Palsy we celebrate what Jonah has accomplished.

Noah's speech continues to improve and we find him using all kinds of new expressions. It is wonderful to see! He loves taking walks with Grandpa Langston and pointing out all the planes that fly over head or looking for the birds and saying, "Mom! A bird!! Tweet, tweet!" What a special time, sometimes I wish I could have more time to really enjoy this phase of life. It goes by too quickly.

In early January we had a family trial that put us in the path toward a new job for Shane. He started working for Imerys/World Minerals the first of February. Since that time he has been working during the week and commuting the 3-hour-drive home to see us. We have our home on the market which has been a challenge with the state of things here in California. We do have an offer, a very low offer, but nonetheless an offer so we are waiting to see if our bank will agree to the sale.

In the mean time I have been spending hours on the phone trying to find new specialists in Santa Barbara and try to get the boys set up with a new pediatrician, etc.

I am glad to be in an area close to the beach with good, clean air. I really think the awful air of this area has affected the boys. I am hoping being closer to the coast will improve things for them and for Shane and I too. It is a beautiful area near Santa Maria but it also has the typical Central CA issues (public education can be poor depending on your district, gang violence can affect some areas more than others, etc.). We thankfully are living in a smaller town called Orcutt that is very quiet and outside of the "other" stuff that we'd really not rather be a part of. I am still working on a good pediatrician that is taking new patients but hopefully that will also come together.

We are hoping this new company will be a good opportunity for Shane to finally grow and make a career for himself. The past 5 years have been incredibly challenging. There are many days we miss being in the Navy but we still hope the move outside will be the best choice for Shane's career to really develop.

I still think about going back to school some days. I wish I could as I'd love to get my teaching certification. I wish I would have stuck it through with my undergrad in education, not that I did not enjoy studying Public Relations but realistically with our "new life" a teaching career in a few years would be best for me as a Mom.

Thanks everyone for following our family and offering the prayers that you do on our behalf. We love each of you and are so grateful for all the special people and family that are a part of our lives. We really are blessed.

2010-11-29T21:44:00.000-08:00

I cannot believe it has been several months since our last post. It has been a very busy time for us. Some good and some difficult things have happened.

In August, after Jonah's multiple surgeries at the Madera children's hospital we transferred Jonah immediately up to Cedars Sinai. Within a week or two of this last posting we found ourselves back, yet again, in the emergency room at Cedars Sinai. Jonah's shunt was over draining and they took him in to the PICU for observation until his surgery the following morning. I immediately liked the new neurosurgeon, Dr. Danielpour. Not only is he very intelligent and talented but he has amazing people skills, something that was seriously lacking in our former neurosurgeon. Dr. Danielpour said they would be going in to check the shunt, make an adjustment and also attempt a ventriculostomy. He said if they were able to place a catheter between the third and fourth ventricles this could assist with Jonah's CSF drainage and possible some day take place of a shunt. Can you imagine Jonah being shunt free? He did say that the ventriculostomy would only be a 50/50 likelihood of actually taking place of a shunt but the potential is obviously worth pursuing.

After the surgery, Jonah spent another week in recovery with a small set back as they continued to find that perfect pressure adjustment for his valve. Finally, finally toward the first of September we were discharged only to turn around and return that night to the ER because Jonah arrived home vomiting. The second trip back was much shorter and after a few days of final adjustments we were sent home. We did make one more visit back to the ER two weeks later as Jonah was experiencing a great deal of agitation and sleeplessness. It turned out that the CT scan showed a massive sinus infection which was causing Jonah's troubles. Thank goodness they were able to send us home.

Soon thereafter, we had Jonah's IEP. We made it well known throughout the district that we were seeking legal advice and would pursue things to fair trial if they did not come to the IEP prepared to provide Jonah the services he required. I am happy to say that the IEP went well and Jonah started home visits the first of October. He is currently receiving speech and OT at home as well as vision and goes to a CCS state run office for physical therapy.

In addition, we continue private therapy for Jonah and he is averaging 6 visits a week of just private therapy plus our home school, etc. We are very, very busy.

Noah started a speech preschool three times a week at the local elementary school. He gets to ride the bus to school and back, they come to our front door to pick him up and he is more excited about the bus ride then about school itself. He is such a little boy and loves adventure.

We also were able to get a new, adapted Honda van for Jonah. What a blessing! The local state regional center paid for the very expensive adaption which left us with only the cost of the van to cover. It was a huge answer to prayers.

Overall, we have felt very blessed this past fall...even with all of Jonah's health challenges the Lord has always provided in many, many ways. We are thankful for our boys, thankful to still have our Jonah with us and thankful that we are together as a family.

We enjoyed our Thanksgiving with Uncle Coy and his family. It was the first time his girls and wife saw the boys. We are now in San Diego enjoying a vacation with Grandma and Grandpa Hanna.

We are grateful for all we have learned this past year and hope the Lord will continue to bless and be with our family as this year ends and a new one begins.

Merry Christmas everyone. We love each of you and thank you for your continual love and support.

2010-08-08T22:14:00.000-07:00

"If we are serious about our discipleship, Jesus will eventually request each of us to do those very things which are most difficult for us to do."

-Neal A. Maxwell-

It has been some time since my last entry. So much has happened over the past month and a half that those of you who follow us by blog may feel behind because I have not taken the time to update. I feel it is important to take the time tonight, even if it means putting bed off for a while.

I spent some time tonight searching for that perfect quote to start this entry and the above seemed to resonate most with my heart.

We have been asked many times over the past few years "to do those very things which are most difficult for us to do." We have known a lot of hardship in our young family. Because of this, I have a greater love for those who have gone before, who have pioneered the way for us to have a better life and in my church for those early members of our faith who gave up homes, families, lost children and husbands in order to accept the gospel and pursue religious freedom. I feel in a way that I better know their depth of tragedy and sadness and I hope I also better know their intensity of faith in staying committed and true to the gospel of Jesus Christ. I also know their questions and some days lack of understanding regarding the Lord's call to suffering...I also know and feel these things in my heart.

Not one week after Jonah's seizure and EEG this past June, Jonah began to show symptoms of shunt failure. I was concerned and worried as Jonah up until now (two years time) has never had issues with his shunt. I waited over night and the morning of June 24th I rushed Jonah down to the children's hospital emergency room in Madera just to make sure that my suspicions were incorrect. I prayed the entire way but that maternal feeling we women possess really had hold of me and somehow I knew things were not right. Ironically we were almost discharged for home that night as the initial testing did not show much difference in the functionality of Jonah's shunt system. But, perhaps out of inspiration, the overseeing neurosurgeon decided to keep Jonah over night and by the next day Jonah's neurosurgeon who has followed him since the NICU reviewed all exams and discussed with me that most likely his shunt was indeed malfunctioning and he would need surgery.

I thought this would be a routine operation, hopefully a quick recovery and that we would be home within the week. Little did I know that Jonah would go through severe complications, three valve changes and even a redirection of the shunt tubing from his abdomen to his heart. By the end of three weeks time, our tiny man underwent four surgeries in addition to two OR room procedures. The most difficult problem was monitoring Jonah's pressure changes, he went through three valves before finally settling in with the valve that he now has. Along the way, after valve #2 they discovered the tubing was not draining properly in to his abdomen and decided to remove it and drain the tubing for 24 hours while Jonah was in the ICU for severe complications to the pressure build up. We honestly thought the worst during those four days of ICU because he was suffering from such severe bradychardias and his respiratory rate was so low. Thank goodness after removing the tubing, his symptoms mostly resolved so they made the decision to reroute the tubing to his heart. He now has a VA (ventriculo-atrial shunt) which drains in to the atrium of the heart. This is not the preferred place to have a shunt as a child, especially because as Jonah experiences his next growth spurt he will have to undergo yet another shunt revision to change out the tubing. With the VP shunt (which drains in to the abdomen) it is possible to leave extra tubing to unravel as Jonah grows but the VA for obvious reasons does not allow for this. It was a difficult decision, I knew about the VA and I knew that it's risks where more complicated and potentially could even be fatal because of the location but we were in a position that we had no choice.

After the VA placement, Jonah underwent one last valve replacement. By the time this surgery rolled around, I threatened transferring him to Cedars Sinai and the Madera neurosurgeon called and spoke with the CS neurosurgeon who then spoke with me and confirmed that unfortunately Jonah had to have the final valve change out. I was so exhausted by that day and if anything, had lost faith in the neurosurgery team and wondered why Jonah had undergone so many revisions in such a short period of time. I know neurosurgery and shunts are not a perfect science, there is no denying this but as a Mother I had to pursue other options when they began talking about a fourth major surgery. I am glad that I did, as the doctor at Cedars Sinai was wonderful and we now have switched to him and he plans to follow Jonah.

Jonah was officially discharged around July 17th. His eating was awful the last week in the hospital and we spent hours trying to work with him to get his skills back up to an acceptable point. We ran every GI test to check his fundoplication, make sure his swallowing was still safe, check his gastric emptying, which all came back normal and fine. The final conclusion was that the extreme trauma had caused psychological harm and Jonah had suffered set backs in his area of skills, including eating. It all makes sense, it does, but it did not change the fact that we were struggling to get Jonah to eat. Finally he seemed to be turning a corner and I convinced the team to let us go home and battle his residual problems in his own environment where he was most likely to recover quickly.

The past few weeks have been very up and down with his improvement. His eating is still not completely back to normal but we are getting him to eat his normal diet, it just fluctuates in the amount of time that it takes (sometimes taking as long as 30 minutes). I refuse to give up on Jonah because he does have the skills to eat and does not need the assistance yet of a G-tube, although I have had many doctors try and convince me that this would be so "convenient" for me, etc. I think the doctors do not think from a developmental perspective and most importantly they fail to remember that it is not all about "me" but really it is about Jonah and what is best for him. I am not able to take that independence from him, he has so little in way of independence. Why would I take from him this ability? No, we will keep up the fight and get him back on track even if it means sacrifice on our part.

It is so good to have him home, July was such a scary time for all of us. A time when we found ourselves thinking things that no parent should ever be faced with having to think or deal with. Through it all, I felt the spirit that Jonah is loved, Jonah is special and God loves my son perfectly and completely.

Jonah received several blessings while in the hospital, including one before surgery #2 where a local Bishop and his counselor came in to the hospital and administered to Jonah, the spirit was very strong and it was confirmed that Jonah is a very special child to Heavenly Father. For this I am grateful. I am grateful that my Father, who traveled down about the time Jonah went in to the ICU to help (so did Grandma and Grandpa Hanna who were a tremendous help at home with Noah) was able to council me in the hospital and remind me of the eternal perspective of things. One particular night, I was feeling so overwhelmed with Jonah's situation, with our home situation, the stress on Shane and I and Noah and most of all...my worry about Jonah and his suffering when my Father reminded me that I had to keep the testimony of Jonah's incredible mission here on earth. He reminded me to remember all the experiences and times that I have been able to bear testimony to others about the love of God, the purpose of family, the meaning of charity, compassion and the true meaning of life. He reminded me of all the people I have met because of Jonah, other amazing women who are so inspiring themselves in all they shoulder with their own challenges and trials. He helped me remember that I have a whole other world that is part of my life now because of Jonah and I will be a better person because of it. It is so true, I can think of several instances in the past months were I have been able to bear testimony of God's love through my care of Jonah. I think back to his seizure at the local hospital in June, one particular ER nurse approached me (I will admit it was not with the amount of tact I would have preferred) and toward the end of our conversation she told me, "I look at people like you and it makes me believe that there are still good people in this world, people who really care." I was grateful for what she said and she opened up about being a single mother with children who were struggling and her own struggles and wondering if God loved her despite her mistakes, I was glad I was able to bear my testimony that I knew God did love her and always would.

Does this mean that every day is easy? No. There are hard days, very difficult days and there are lots of tears and many moments of wanting to understand what sometimes seem to be unjust and not right. But when I read the above quote tonight, I felt it best expressed what Christ asks us to do. If we are serious in our commitment to him, these times of challenge may come and they may mean incredible sacrifice, unimaginable sacrifice, but if we are faithful and true we will do all that he asks of us.

For those who wonder, "why do you choose to keep your son at home and not in an institution? why did you not let him pass in the NICU instead of intervening?" I say that because of our gospel perspective and our faith, Shane and I knew in our hearts that God had a purpose for these boys. We prayed so fervently during the NICU and we knew that no matter the outcome, God wanted Jonah to have the chance to be in a physical body and to be part of an earthly family. I try hard to keep this perspective, I try hard to express to others what it means to raise a child with special needs and love them for all that they are but I still have those periods when I wonder to myself if I have been forgotten. In my best moments, my moments of clarity, I know that although God is trying me there is a reason behind all that we are doing right now as a family. This time in my life involves such incredible trust, at times I don't think I possess the strength to trust yet another day but I have to keep the perspective that God has a greater plan in store, even if it does not reveal itself until the latter part of my life.

A very wonderful, inspiring Mother in my church ward whose special needs son is now 17 years old said to me the other day, "Michelle, I think to myself sometimes, how does she do it? How does she do this being a young mother when our son was our last and we had already raised most of our family? But then I remember Michelle that God is preparing you for something important, something that you may not know of for many, many years." She has been such a wonderful inspiration to me, a strong and loving woman who has overcome so many hardships herself and remains a complete inspiration and motivation to so many people with and without children who have disabilities.

I pray every day that I will live up to the great challenges that God has given me, that I will overcome and be the person he wants me to be. Yes, there are days when I think, "Really, God! Was I such a bad person to start with? Do I really need this much refining?" But I have to keep the greater perspective which is that if I stay true and worthy I will be able to be prepared to do all that God asks of me, what a blessing it will be when that day arrives.

We are still looking for work and praying the time comes soon. We know there will be sacrifices but we pray that Shane will be afforded the job that can take our family to an area where we can be closer to good health care. We hope this time is not far away. Shane continues to teach at University of Phoenix when they have classes for him, he works at Langers Juice managing their Bakersfield location. I may have to look in to a job myself, sadly, because this year has been so hard on us...the past couple really. So far I am still looking and hope the Lord will help us make the best decision in the matter.

Noah continues to grow and expand his vocabulary. I will say that July was hard on him, the first week of Jonah's hospitalization he was in several different homes and really struggled with brother and Mom being away so much. When we returned, he went through a good week or two of severe temper tantrums, more then his normal and I think it was his way of telling us he was stressed too about all that was happening with his brother.

There are also so many sweet things happening, like Jonah learning to give kisses and Noah now more spontaneously hugging and kissing his brother and the first time Noah told me, "wuv you!" I love to see this, I love to see Jonah and Noah growing up together and keep praying that they will have a special bond for each other. I love seeing them grow in the gospel, Noah loves the word "temple" and every morning Dad walks past our oil painting in the hallway of the Salt Lake temple and asks Noah, "What is that?" Noah tells him excitedly, "temple!" Shane then takes him to the picture of Jesus and asks, "Who is that?" He says, "Jee jee!" (He has a hard time with Jesus). He is learning to pray, fold his arms and now I am having him repeat his prayer with me...before I know it he will be saying his own prayers all by himself. These are such precious moments for me, I truly think my favorite time of the day is the end of the day when I can take both boys in to the rocker, read the children's set of scriptures to them, sing them a couple of Primary songs and say a family prayer. They are growing up so fast, I am trying to love all of these moments.

Jonah will be switching over to the school district this fall and we have been battling his IEP. Sadly, the schools here do not have good programs for the more severely disabled and we have our challenges ahead of us but we are taking all the right steps, studying the California laws and meeting with a local advocate. We are praying for the very best for our tiny man. Noah will be discharged from his early start speech program (yay!) and will start a normal preschool in October after his third birthday. He will continue speech through the local school district.

These are our current adventures. Thank you for catching up and thank you, all of you, for your continued prayers and heart felt words of love as you continue to follow our family happenings.

2010-06-17T12:09:00.000-07:00

Just a quick posting for those who follow our family on blogger.

Jonah has now gone through two seizure episodes since May 20th. I mentioned the mess we went through on the 20th in trying to get the local ER to give Jonah an EEG. Since then we made an appointment with the local neurologist so we could petition him and his staff to ask for a standing EEG order so the next time Jonah had an episode we could get the test done.

Needless to say, I called this past Monday morning (met with the local doc this past Friday) to assure that the primary care physician had submitted the request to insurance as urgent. I was told they had not so I called Dr. Ho's office to resubmit the request, which they said they would do immediately. Our insurance is supposed to turn around urgent requests in 48 hours.

Yesterday at 4:00 we were all napping and I woke up to hear Jonah whimpering on the baby monitor, I knew he was in an episode. I raced down stairs to check on him, called our insurance rep and asked if the request was ready because we needed to get him to the local ER. Well, of course it had not been processed even though at this point it was past the 48 hour mark. I was furious and after 15 minutes of waiting for a call back (during that time I called back twice and just got voice mail) I called 911. By the time the ambulance arrived they finally had a decision for us and we took off. I was so frustrated, our insurance has messed up so many times with my boys. I called and filed an official complaint with the supervisor of the customer service department. I followed the ambulance up to the hospital and as I was pulling in to the parking lot a cop caught me on my phone. She told me to roll down my window, I did and she asked if I was with the ambulance. I said yes and she said, get off your phone! Of course I did just that and as I scrambled out of my car this same cop pulled around the parking lot up to me and began to yell at me that she could still ticket me even though this was an emergency situation, I nodded and yes, I assume I looked agitated because I was in the middle of dealing with a seizure! She then proceeded to scream at me that I was giving her attitude and she literally pulled in to the street and blocked me from getting to the ambulance (I am not being dramatic her folks, even an ER nurse saw what this cop did and came up concerned about me, the EMT said she this particular cop was known for being plain awful). I told her I understood what she was telling me and appreciated her not ticketing me but apparently that was not enough, she said she would be waiting for me in the parking lot, I said, "That is fine but I have to go my son is having a seizure..." She finally let me get to the ambulance. Are you kidding me? I am sorry I was on the phone with my son's insurance as we are driving emergency to the hospital because he is having a seizure, ok? But treating me like a hardened criminal when I am a law abiding, tax paying citizen because I made a mistake is just ridiculous. Honestly, I did not care at this point. I just wanted to get to Jonah. Sorry for the rant but come on! Anyways, I did finally get in to the ER, Jonah was coming out of the seizure so we scrambled to set up the EEG and hopefully catch something.

To add to our stress, I had an ER nurse who decided she wanted to pester me with questions (she was not even our attending nurse). I am somewhat used to people asking lots of questions because of Jonah's disabilities but when insensitivity is mixed in, it is really frustrating for me although I try very hard to mask my real emotions and instead be as polite as possible. She asked me if I would do IVF again knowing the outcome with the boys (can you believe it?), how did I take care of a blind child and how would someone who is blind function (are you seriously in health care or have you just not had any life experience? how many blind people live very fulfilling lives?), it must be hard for me having such a sick child, how do I do it, what is it like knowing he will need care for the rest of his life. Why is it always me? Is it because I look approachable? Perhaps having a stern, angered look would better suit me so people will leave me alone and not ask such asinine and insensitive questions!

*Sigh*

Anyways, we waited until 10:30 p.m. to find out that indeed the EEG showed seizure activity in the right lobe (the area that was most affected by the bleeding after birth). I asked them to consult with his Cedars Sinai neurologist to see what anti-seizure medication she wanted to prescribe. We started him on Keppler last night and my hope is that it will be an effective dose but not an overpowering dose as these meds are known to cause children to be drowsy and not as attentive and we certainly do not need this. We made it home at midnight and settled in to bed by 1:00. Poor Shane had to return to the night shift so he could suspend one of his employees and ended up staying until early this morning. We are taking shifts today trying to catch up on sleep.

I applied for a position with our school district doing clerical work at one of the local elementary schools. We are still trying to research the local school system so we can be prepared for Jonah's IEP in the fall.

Shane continues to apply for work opportunities, I laugh because just last week he applied for a local job and I told him of everything he has applied for he will hear back from the local recruiter. And he did! Monday, the local recruiter called. He is sending on Shane's information. Yes, it would be a great increase in pay and provide Shane with a larger management role in a larger organization but it would still be local! Good grief! So that is what is happening here in California.

We will continue to keep you posted as things happen. We have a lot going on this summer, hopefully we will be able to receive some long awaited answers soon.

God bless, everyone.

2010-06-06T22:41:00.000-07:00

Just a quick posting as the night is already late and I need some rest.

I meant to post photos of my trip back east but I down loaded them to our older lap top and need to fish it out and transfer the photos to the family lap top so I can upload them without problem (our older lap top is so painfully slow, I only take it on trips when I need a spare).

The trip was wonderful. I was once again reminded of how much I miss living in Northern Virginia. The green landscape of back east is something I fell in love with years ago and things were never the same after moving to dry California. I enjoyed seeing the moving and emotional monuments as well as Arlington Cemetery. We were able to see not only the changing of the guard but two special honor wreath ceremonies which were all very spiritual, truly. I am always moved by the young men who march in front of the tomb of the unknown soldier as a tribute to the countless other unknown soldiers who have also lost their lives to war in honoring our nation. We visited the Smithsonians, drove to Amish country as well as Philadelphia (first time, it was amazing to see all the historical sites including Independence Hall where they signed the Declaration of Independence). It was all very moving and reminded me of why I love our great country so much and how grateful I am to have all the freedoms that I enjoy.

I am so proud of baby sister, Valerie. She has worked hard to finish this grad program and her ceremony on the Mall was amazing. The First Lady addressed the graduates and their family and although I do not agree with her politics, she was very touching and motivating. Her speech was focused a lot on giving back to the world and seeking out ways to strengthen communities wherever the graduate may end up being. It was a very fitting, very appropriate message, especially as our world becomes more and more apathetic and less caring of others.

We thought we had turned a corner with Jonah's seizure episodes and two weeks ago he started in to another episode about 9:00 at night. He had gone a month and a half without an episode. We gave him a good 45 minutes of being hooked up to the Pulsox, while monitoring his sats when we decided he was definitely at a point we needed to call 911 and get him to the local ER for an EEG (as his neurologist from Cedars Sinai requested a month ago). To my absolute anger and shock, Shane and Jonah were stuck in a room with little attention until finally Shane made a fuss about getting the EEG going only to find out that they were not able to administer the EEG from the emergency room and would need to page Jonah's pediatrician at 10:30 at night. So Shane sat and waited and finally after 11:30 p.m. they came in and told Shane that apparently they do not have staff on the weekend to give the test. They gave Jonah his Diastat which immediately brought his heart rate down and he passed out from exhaustion. I was at home waiting with Noah and in a complete rage by the time Shane came home at 1:30 a.m. How could this happen? I specifically had Jonah taken to Memorial hospital because they are to have the best pediatric services in the area and a month ago I called and explained our situation and was told by admitting they could accomodate us at any time for the EEG. I was furious, absolutely furious that we had wasted an episode, made Jonah suffer for nearly three hours (about the length of his episodes) without anything to justify what we put him through. I think that night was a turning point for Shane and I. Don't get me wrong, we have been looking for months now, trying to relocate and get to an area closer to a well established children's hospital but that night...it really hit home that this had to become our entire focus. We absolutely cannot remain here in Bakersfield, their resources are so limited and so behind that we will never be able to really provide properly for Jonah without a lot of family sacrifice that includes hours and hours of commute time to hospitals and clinics outside of town. At this point, we are trying to get to a local neurologist who has staff at another local hospital and we hope after meeting with him he will write us a stat order for an EEG and alert his techs that at any given time Jonah could go to the hospital so the next time he goes through this, we can actually get the test we need. Cedars Sinai just did not understand when I called them the Monday after to let them know, how can a local ER not administer an EEG? Obviously the hospital in Los Angeles has no understanding of Kern County, two hours north of them. This episode was concerning to me as I noticed more jerking in Jonah and I really feel that he does seize throughout the episode, although by far the most concerning symptom is the elevated heart rate. I just want answers and I pray that we can work through the local system to get that darn EEG.

Unfortunately, I wish I had other good things to say about the past few weeks but our frustrations have continued to come day after day. The boys continue to have congestion and runny noses which their local pediatrician keeps diagnosing as being ear infections. Well, after three opinions about tubes (finally we chose to pursue the conservative, well respected and well known specialist at House of Ears affiliated with USC in Los Angeles) we took the boys for a second visit this past Friday to Dr. Luxford. He looked at both boys and said, yes there was fluid but not infected fluid and he would not have the boys on antibiotics (although their pediatrician prescribed antibiotics the day before). Noah's ears looked worse then Jonah's this past Friday but again, did not have infected fluid. It frustrates me because I worry it may be affecting Noah's hearing, it could be...it certainly has been talked about as an option by all doctors. And every time Jonah gets sick, he is just plain awful. He gets so upset and the extra congestion, runny nose and pressure in his ears just makes him miserable and awful at night especially. I do respect this doctor and have spoke with other parents, one in particular whose daughter was very similar to Noah and in the end did not get tubes and was fine, but as a Mother I just want to take care of the problem so the boys will not suffer anymore. Shane and I have decided for now to stick with Dr. Luxford. He will see them again in August. He is very conservative and I am grateful for this, I do not want the boys put through yet another procedure unless absolutely necessary.

In other news, we are approaching the boys final IFSP reviews for their early intervention program that they have been attending for the past year. As I said in my earlier post, Noah will not qualify in the fall for speech and will not go back to Richardson but will attend a regular preschool and continue speech therapy through the school district at a local elementary. Jonah, however, will become part of the county programs for the disabled as our local school district does not provide for pre-K. I have had a lot of eyes and ears helping me out with what is turning out to be a huge battle for us in helping Jonah get the right kinds of services which he will require. I was alerted a few weeks ago by someone involved in the IFSP program that the county schools Jonah would be eligible for come the fall where very behind the standard and not really good choices. I decided to attend one of the two, Blair, with our Kern Regional Center case manager (she provides services through the local county regional center). My visit left me with serious concerns about the set up for preschool. I found that the classroom was clutter and not necessarily organized in a way that would give the children lots of area to move freely in their adaptive equipment (which is supposed to be the focus of this preschool program, they use the MOVES curriculum), the school is not in a good area of town and is old (two things that could be worked around) but most importantly was the virtual non-existence of therapists. I was told the occupational therapists that the county has almost never visit the site and that the aides just do "hand over hand" so there is no real OT program, I was told they never have a physical therapist involved with assessing the children and overseeing the MOVES curriculum to assure that the aides and teacher are working with the disabled children appropriately and helping them really reach their full potential to be functional in the classroom, when I asked about speech therapy they pulled in their speech therapist who said they did a once a week, half hour "group" session and she had really no concept of oral motor/sensory needs of the children nor did she provide any of said services. I found that the first hour of every day was spent "feeding" the children because they come from anywhere around 8:00 to 9:00. So what happens with the child fed at 8:00? The answer is obvious, they sit after eating and waste 45 minutes of time. I was so completely overwhelmed by what little was being done that I immediately started making calls to district contacts as well as the IFSP/Richardson Center principal who will organize Jonah's assessment team for the fall. I made sure the current principal understood that the assessment team is to include vision (which he qualifies for and Blair provides maybe a once a week vision specialist who helps the kids on light boxes but he could easily qualify for several times a week), occupational therapy, speech therapy and I want physical therapy but this is going to be a battle as the current principal said they do not have PT's on site and I was "welcome to bring a representative to Jonah's IEP with their assessment." Well, we are doing the research and as long as this is something protected under law, the current principal and her services will be required to obtain said physical therapist to provide the assessment and attend the IEP. Originally when I spoke with Richardson's principal, she told me that their team consists of a school psychologist, the current infant program teacher and a school nurse. Are you kidding me? Your most severe group of children and you have no one representing their gross and fine motor needs which will be necessary to learn in order to function in a classroom? I was told I would have to put an educational component behind every request, no problem. How else is my son to learn to hold a pencil, write on paper, go to the bathroom, go to the lunchroom or playground if they cannot function and are not learning said skills? How can he learn the curriculum if it is not being adapted for his visual needs? I have absolutely no doubt that with the law behind us and the right representatives, we will bring the district and the county to the table and address what I consider to be an awful neglect of the severely disabled population of Kern County. It is almost sickening what is not being done and the sad thing is, I have been told time and again in off the record conversations, the problem is the county/districts locally have never been challenged and that is how they get away with what little they do. Not with my child, not ever with my child. So needless to say, we have made several phone calls which have included our local district special education coordinator (who did act genuinely concerned and admitted she had not had a Blair child in some time and wanted to be certain his every need was met, she said she would be spending the next few weeks researching) to the current infant program principal to private calls with therapists who are giving recommendations to calling every other disabled preschool setting to see what our other options are. I even called and really grilled the Blair principal about the curriculum and lack of therapist involvement, expressing my serious concern over the setting. We really have a battle ahead of us but I feel that more than likely with our education, drive and dedication we will get what we want for Jonah. It also helps that Shane serves on the Kern Regional Center Board and has met with their director asking specific questions about how to plan and execute Jonah's IEP so he does receive what he needs. He is to meet in the next week or two with a retired county employee who headed the regulation committee that oversees all special education programs. She was supposed to be phenomenal as she had the special education background. The gentleman who has taken her place does not and although well meaning, we have been told he is not doing nearly as good of a job making sure such programs are providing the services they should be providing. So Shane will meet with her for lunch and really strategize about how to get around the district's/counties ways of refusing services and understanding exactly how each functions and what their skeletons really are, etc. Thank goodness we both are starting now on this process as sometimes thinking that we only have until September feels like too little of time. I have had interesting comments from those asking why I am starting so early, well, I reply that if we knew Jonah's required services where in place I would not need to start so early.

So as you can see, this summer is packed with many things to overcome. I am sad to say that I am also looking for part time work. This past year has been very hard on us. Shane did not receive his bonus as promised from Langers and with Blue Cross changing their co-pay structure on their health care plans, we have been really hurting over the past few months. Jonah's therapy co-pays are costing us alone an extra $400 a month and that does not include any hospitilizations for Noah, Shane or I. We do have MediCAL as secondary insurance for Jonah but Bakersfield is just not established enough, so most therapy groups or medical groups here do not take the state insurance. I am applying within our school district for clerical work and at doctor's offices. I really need the insurance so hopefully something can be arranged that won't affect my time too much with the boys as they both will have preschool starting in the fall.

Thank you for your prayers. Please keep them coming. We have many, many challenges before us. I often think of the scripture in Doctrine & Covenants 82 which states, "For of him unto whom much is given, much is required." Yes, I have plenty of moments where I think: "We certainly do not have incredible wealth, yes more than most of the world which I guess does make us rich but not more than your average family, nor do we have incredible wealth when it comes to the health of our children but if I really listen to my heart I know that we have been given much in way of faith, spirit, the gospel of Jesus Christ and the knowledge it brings us. Yes, we have our challenges but God is with us and trusts us with so much because of our faith. We pray to live up to what he sees in us and we thank you all for your continued support in helping us along the way.

2010-05-10T22:52:00.001-07:00

Ear infections, ear infections. That seems to be our pattern and the start to the month of May.

We met with the local Ear, Nose, Throat specialist who felt both boys needed tubes and that Noah's ears were worse off than Jonah's ears. Interesting. Jonah usually takes longer to recover and is always in more pain. I was required to go to the local specialist by my insurance so I complied but I had already done my research and knew that his reputation for pediatric care was not a good one. Thank goodness when I suggested that the boys be followed by a Madera ENT because of their varying special needs, he agreed. Especially when I discussed Jonah's recent seizure like episodes. Both boys see an ENT in Madera this Thursday. Shane and I will discuss after they meet with the specialist and we have already said we may wait a few more months for their teeth to finish coming in and then see if this does not alleviate some of the infections before agreeing to the tubes; this was great advice given by a local Mom whose children have all had some involvement with ear infections and she takes her children to a well known clinic in Los Angeles.

Aside from a new ear infection for Jonah, both boys are doing fairly well. I actually think Noah is getting yet another ear infection as he has been a bit more cranky, not eating as well and his gland right behind his left ear is swollen and this becomes noticeable to me when he is starting an infection. I am waiting to see what the ENT says Thursday and if he notices an infection he can prescribe an antibiotic. These poor boys have had one infection after another since the fall, perhaps soon there will be a let up for both.

Both boys were seen last week by a dental clinic at UCLA. To my huge relief, neither had cavities! I was shocked. I was fully expecting Jonah to have several and maybe need more serious work done. It was such a relief for Mom! So after a cleaning and fluoride treatment, both were sent home. I will have Jonah seen again in 3 months, it will be a payment out of pocket but the clinic does not charge much at all ($45 for cleaning and $20 for an exam) and for the security of knowing his teeth are ok it will be well spent.

Both boys continue with their therapies, more so Jonah than Noah. Right now Noah is mostly on track with his fine and gross motor skills (hurrah!) Noah does continue his speech therapy but is making good progress there as well. He loves to chatter and although every word is not always understandable, he is getting better at putting words together and building his vocabulary. His Richardson Center teacher has proudly said that he will not qualify in the fall for continued schooling and will need to go to a regular preschool! Hurrah! It was bittersweet as I love his current Richardson Center teacher and she has helped him come a long way but it was great to know of his progress! She also told me he is very good about using his manners in progress, which in my book is one of the best compliments a Mommy can get. We work very hard with him at home to always say please and thank you.

Jonah continues with the MOVES program and we love his teacher Carmen. She is so wonderful and so loving. We are intently looking at preschool options for Jonah. We heard some negative feedback about the Blair school through the county that Jonah would qualify for through the school district. We have also heard that really it comes down to the teacher and you have to be careful about who your child ends up with so we are doing some behind the scenes research. There is also a preschool opening up at a local daycare that Jonah qualifies for through his state insurance and they are fairly close to our home in the NW so tomorrow when he meets for his health assessment, I plan to ask for the special ed teacher's phone number so I can call her with some of my questions. My biggest concerns are that the program include a certified therapist who oversees the training of the teachers, aides in regards to the gross motor, fine motor, speech and feeding therapies. Jonah qualifies for vision therapy as well and this will be a huge battle as right now our school system has a very poor vision therapy program. So, needless to say we have our battles to fight but thank goodness we have a few months to go until Jonah's IEP. Hopefully this will be enough time to really refine what we plan to require of the school district and choose a proper program for Jonah.

Shane continues to look for a new job opportunity, one that can bring him closer to a community with a good children's hospital and hopefully better services for Jonah all around. We are applying everywhere from Grand Rapids, MI to Utah to Georgia. Our true requirements at this time are good health care and low crime. If we are blessed enough to find this we will end up with a pretty good community. So please keep our family in your prayers, we are to the point that we need to relocate ourselves to better provide for the boys.

Thank you everyone for checking in with us and keeping up on the boys. We appreciate all the love and support.

I had an 80's party this past Saturday night to celebrate my 33rd birthday. We had a great time. We borrowed an awesome light display from our friend Ken Ottinger who DJ's as a side job and had fun games including a challenge to be the first to finish a Rubix cube. It was fun!

This Wednesday I leave for Washington D.C. to see my baby sister Valerie graduate with her grad degree from George Washington University. It will be so great to see her, I have not seen her since last summer and among many things the First Lady will speak at the university ceremony Sunday. For my actual birthday (May 14th) we decided to travel up to Philadelphia to see the historical sites and enjoy the local culture. I am excited to see D.C. I miss it so much. The local culture, the amazing historical sites and the beautiful greeness of Washington, D.C. are some of the many things that I miss. I am looking forward to also relaxing, reading books and just enjoying time away from the many things that I deal with at home.

Thanks again everyone for all your well wishes and many prayers. We will keep you updated with new information as it happens.

Happy spring!

2010-04-27T17:17:00.000-07:00

I cannot believe how quickly this past month has passed!

We are in the final week of April and so much has happened.

Jonah met with his new neurologist at Cedars Sinai and she accomplished more in our time together than has been done over the past several months. She wants to start a few rounds of testing to see if we cannot pinpoint exactly what is causing Jonah's Autonomic Storms. She ordered a round of Mitochondrial blood work, as far as I can understand this testing takes a look at the cellular make up through out the body. Cells themselves are made up of mitochondria and if the mitochondria are not functioning properly or creating the correct kind of energy, they can misfire and cause problems in whatever part of the body where they might be located. In some individuals, this can be one organ or several, in Jonah's case the neurologist is thinking they may be not correctly functioning in the Autonomic nervous system. After our time together, she also was leaning toward the diagnosis of Autonomic Storms but did not want yet to rule out seizures and after she reviewed our home video of Jonah's last episode on April 1st she said if she were reviewing just this information she would think Jonah was having seizures. Sound complicated? It is. Even this Cedars specialist said with Jonah's long list of issues, it would take time and patience to really figure out what is causing these episodes to happen. She prescribed Jonah an anti-seizure med that can be given at the onset of an episode which should stabilize his heart but with the request that the next episode he have, we get him immediately to the local hospital and set up an EEG just to see if we cannot rule out seizures. She said that perhaps he was going in and out of seizures during these episodes, although the length of time was what confused her most (his episodes last 3 hours or longer). We also talked about testing that actually stimulates the Autonomic nervous sytem to see if an episode cannot be induced but the test itself is painful and she did not want to go immediately to that option. So for now, we have completed the blood work (poor Jonah, it included about 7 vials of blood and a bag of urine that we had to collect). Now, we just wait and see if another episode happens and plan to take him locally for an EEG. Since most of you know what little faith I have in the local health system, I called the one hospital that has pediatric beds and made sure that if we visited the emergency room (no matter the time of day or night) they could perform an EEG. I was told yes they could, I won't trust their results but at least they can be sent to Cedars for review. So, after this visit, I finally left feeling like we were working hard to find an answer for Jonah and this is such a feeling of relief.

Noah had his much anticipated surgery last week at Childrens in Madera. His pyloroplasty was performed last Wednesday and thank goodness his recovery went well. By Friday afternoon (late I should say) he was discharged and we were sent home. I was very happy to sleep in my own bed. Noah was a bit better this time around and not quite so clingy, I think having an adult bed instead of those awful cribs really helped. I was more able to sleep with him (which in turn gave me sleep) and he did not panic as much if I used the in-room bathroom and he could not see me. So all in all, I would say this was one of our better hospital stays and thank goodness it was a short one. He does seem to be eating more and we are hopeful the surgery is working.

Today we visited the local ENT (ear, nose, throat) specialist. Our insurance requires we go local and than we can request a second opinion. I was angry I even had to waste my time and money to see this guy because he does not have a good reputation with good care for children and I do not want someone messing my boys' ears up. Thank goodness after I gently suggested that with all their various problems they be referred to Childrens Madera so that their higher level of care could manage their needs, he agreed. Whoo hoo! So now we wait for the referral to go through and see what the Madera ENT has to say.

Our March of Dimes walk was great. We had a few team members who at the last minute could not participate but that happens when you have little ones, still we enjoyed ourselves and had a couple of moms come out to our big BBQ that we did at River Walk. I was able to get a local donation to help cover the cost of food, which was a nice help. Grandpa Langston was in town to enjoy the walk too.

I have two weeks until I leave for Washington, D.C. I am so excited! Valerie is graduating with her grad degree from George Washington University. My parents are traveling back and we will be out for a week. For my 33rd birthday we are going to Philadelphia, I have never been and I am excited! We had enough Marriott points saved up to secure a room in down town Philadelphia, within 6 blocks of all the historical sites. I also get to hear the First Lady speak at Valerie's graduation ceremony, a pretty neat opportunity. I am looking forward to the break as this winter as been very difficult on all of us, most especially the boys. Grandma Hanna will be coming down from Portland to watch the boys (thanks Linda!) and she will be out for a couple of weeks, that will be fun!

I am also having an 80's party for my 33rd birthday on May 8th. I am pretty excited about hosting a party, it has been some time since I have had a get together so I am hoping for a fun time.

Thanks to all of you who continue to read and follow our blog. Many thanks to all of you who continue to pray for the well being of our sons, your every prayer is being heard and answered in God's way; I have great faith in this.

2010-04-08T21:03:00.000-07:00

Well, I couldn't just leave my blog with last night's entry. I am glad to say that the storm has passed and I feel more recovered today. I, as everyone does, have my limits and last night I was beyond my threshold of coping skills. I regrouped and feel back on track to conquer things once again.

I do have great news to report. After several phone calls and a good friend inquiring, I was able to get in touch with a nurse through Kern County schools. She suggested I look in to Cedars Sinai pediatric neurology clinic and that they should have a shorter waiting list. I started the process of getting an authorization through my insurance and this afternoon the nurse made a three way call to Cedars and we are on our way to a second neurology opinion for Jonah within the next three weeks (hopefully sooner). I feel so much more at ease knowing we are on our way to getting hopefully some answers and a better direction.

I also ordered new frames for Jonah today. I went with a tortoise shell colored frame (very Harry Potter and very cute) and they will arrive tomorrow. Dr. Kelly made a new prescription yesterday so once we have the frames chosen I will take them to the optometrist and get new lenses ordered.

Both boys enjoyed school this morning. Noah loves the interaction there and every day his vocabulary is growing. Jonah loves all the songs and constant attention he gets from the various aids and his classroom teacher, they are all just wonderful and so loving. Grandpa Langston was nice enough to go with Jonah to class so I could make phone calls and work on getting Jonah in to a second neurologist.

I had two exciting things happen today. One, the principal at the Richardson Center ask that I sit on a committee the end of the month and deliver a parent's perspective regarding how to improve local health care to serve the at risk population of children. Of course I said yes, but I do hope she knows who she asked to speak because I plan to give a very well thought out and not very pleasant picture of the sorely lacking resources in Kern County. Apparently a rep from First Five will be there and I am assuming will be taking information back to First Five to help Kern County get funding. Second, I was able to get a small donation to help cover the cost of meat for a BBQ post walk on April 17th. I wanted to host this walk for those who have supported our March of Dimes cause. So I am excited that we were able to get this accomplished. Hopefully we will get some friends and team mates out to enjoy the meal.

So friends and family, do not worry too much. I always bounce back, sometimes I just need some time to regroup. Thanks for your worry and love.

2010-04-07T18:21:00.001-07:00

I am just furious today. Furious. I don't even know if that adequately describes the bundle of emotions digging their way around inside of me.

We finally heard from the neurologist today regarding Jonah's episode last Thursday. I literally cannot believe the conversation we had, this is an obviously watered down recap of what happened:

Doc: Jonah's scan was abnormal on the right side and there was a lot of slowing shown (no duh, he had a Grade IV bleed at birth) but we did not see any seizure activity.
Me: So you are thinking this is Autonomic Storming?
Doc: (NO JOKE HERE) Umm...I guess, yeah. How is he doing on the Clonopine?
Me: Uhh, no one talked to me about meds or prescribed anything.
Doc: Oh, ok. So he did not start Clonopine
Me: (thinking dumb doctor, you would have prescribed it) NO.
Doc: Oh, well if his behavior is stable let's wait and see if he has another episode in the next month and then we'll discuss starting Clonopine.
Me: (SCREAMING INSIDE, THIS WAS HIS 6th EPISODE - HOW MANY DOES HE HAVE TO HAVE?) Ok." (End of conversation)

Can you literally believe it? What seriously floors me is his response to the Autonomic Storming question, "Umm...yeah I guess." What the?? What angers me even more is the lack of urgency in getting Jonah the proper diagnosis so we can treat the issue before it happens again. Why in the WORLD would I want to sit around and watch my son go through the hell that he goes through when he has these episodes?

Unfortunately, I checked out getting a second opinion a couple of weeks ago from UCLA and their clinic was so impolite about getting Jonah in (and very rudely pointed out they have a 3-month waiting list) that I decided to try Stanford, even with it being the farther drive. The woman I spoke with today was kind and helpful and encouraged me to get the request in through my pediatrician and once an authorization kicks through the system she said they had April and May openings. Let's just say that Shane is NOT thrilled at the extra time on the road but what is a desperate Mom to do? I cannot sit around until July waiting to get a second opinion while Jonah continues to have episodes and the doctor who has seen him acts like he, himself, is not even sure of the diagnosis. I need someone to stand in and start taking my son's health seriously.

In so many ways I am terrified to see what happens to health care with this new legislation that has been passed. I cannot even think of how horrible it will be for children like Jonah to get in to a specialist when their patient load suddenly quadruples and everything else goes down the drain. Ugh. Let's just say I am terrified for the future when it comes to health care and what that means for my son. I am already seeing preemptive work at the hand of Blue Cross. This year they started cutting back on DME equipment and I could not even get a stander approved for Jonah, a stander! The one piece of equipment that has been around for decades and is commonly used for disabled children! Come on now! To make matters worse, we now have co-pays with ALL our therapy visits (yup $20 a pop), we went from one year where there were no co-pays for therapy related visits to there being a $20 co-pay for each (and with 6 visits a week that adds up and fast). Why, you say? The insurance companies know what is in the pipe line with all this health care garbage being passed by the current administration, they are making preemptive moves to cover themselves and all of the additional expenses and losses that are coming their way. So, those of us who are the hard working Americans who have paid for insurance all along are getting penalized now and will continue to be penalized down the road. I better just stop there.

Anyways, back to the neurology issue. I am hoping that something is going to result and soon. We have to be given more clear answers regarding Jonah's condition. Please pray for us that we get a competent doctor to help us. I am not sitting around waiting for Jonah to have another episode when the next episode could be much, much worse.

I just had to vent tonight, today was a day that left me beyond exhausted. In addition to the neurology results and battling to get records transferred and a second opinion request put in to insurance, I was also in Madera with Jonah's eye specialist, getting him new frames/lenses, calling three different dental practices at UCLA to see who can get Jonah in the soonest as I am positive now he has a cavity and some other serious issues with his teeth and battling with our local pharmacy who once again messed up a medication for the boys. As soon as Shane gets home I am holing myself up in my room and reading Pendragon. I need an escape.

2010-04-03T23:18:00.000-07:00

I can hardly believe that tomorrow is Easter. Grandpa and Grandma Langston flew in to town this past Wednesday and we have been enjoying their company. We listened to our Saturday sessions of General Conference today for our church. It was relaxing to sit and enjoy family while taking in the messages of our prophet and apostles. In between sessions we enjoyed a egg/toy hunt for the boys. They had lots of fun filling their baskets with all kinds of goodies and I think Grandpa had more fun hiding them in the yard!

The boys had a nasty round of ear infections the latter part of March. After two rounds of different antibiotics, they finally started to make a recovery. Jonah is actually still recovering and our hope is that things will not reverse and he end up with another infection. We are getting close to the point of needing an ENT consultation if he develops one more ear infection.

I wish I could say that this past week fit in to our normal routine of things but Jonah had another episode this past Thursday morning. I literally have been waiting on pins and needles for this as I knew it was coming. He has been having these episodes since October every month to month and a half. Many of you know how frustrated we have been in finding answers, the neurology clinic has been saying they are not seizures, the cardiology clinic has been saying it is NOT a heart related issue and we are left somewhere in between pulling our hair out. Anyways, this Thursday morning I came down stairs and my father had Jonah and told me he was worried he had started another episode. It did not take me long to realize that he was indeed having the same issue yet again. I have talked about the symptoms, the most concerning being his extreme elevated heart rate (lasting for 3-3.5 hours) but this also includes: profuse sweating, trembling, aggravated nystagmus, in and out tensing of muscles and this time around, Jonah bit his tongue pretty good and it had bled on his pillow when we found him. A lot of the symptoms DO sound like a seizure episode BUT it stumps our neurologist that he is staying in the episode for so long, when most seizures are very brief (not hours at a time). Now, we were scheduled for a 24 hour EEG this coming Monday, April 5th. I called Thursday, told the neurology nurse what was going on and basically begged them that they get him in immediately for the EEG to see if we could capture something, anything. They were not very convinced it would be done so last minute but luckily within a half hour we were schedule that day to start the process. I grabbed Jonah and started the two hour drive down to Madera. His episode started at 7:50 a.m. and about 10:30 he started to finally come out of things. Bless his heart. We were situated and ready to go by 2:00 that afternoon. Jonah was completely worn out, exhausted and very listless for the remainder of the day. I was able to meet with Dr. David (Jonah's neurologist) prior to starting the test and for the first time, a possible diagnosis was mentioned: Automonic Storms. I did have my trusty Blackberry with me so while Jonah slept in his hospital room I did what research I could. Of course, most of what I found was medical journal information, obviously NOT something for a common day Mom BUT I was able to glean this much: the autonomic nervous system is part of the primary motor cortex in the brain and affects heart rate, digestion, respiration rate, salivation, perspiration, etc. These storms happen in brain injured individuals and in very basic terms are what happens when the system misfires which causes various reactions throughout the body. They are NOT seizures but can be confused with seizures and have some seizure like symptoms, even sometimes when severe enough causing seizures. There are medications to treat the symptoms but vary depending on the patient as well as the specialist prescribing the med. On paper, it does make sense and would describe the tachycardia episodes. Jonah definitely has classic symptoms, the perspiring, the rapid heart rate, rapid respiratory rate, trembling, sometimes also fevers, etc.

Of course the specialist wanted to review the 24 hour EEG before further discussion and now we wait until Monday to see what the test results were. I am praying that with the study being so close to Jonah's episode something will be recorded. The specialist did say in some cases of seizure the brain activity is considerably delayed after an episode and can appear on an EEG. We will see.

Poor Jonah, he was so exhausted and worn out. Thursday night in the hospital was miserable for both of us. The lights were kept on for the video, Jonah was constantly waking up and hitting himself (or attempting as we put splints on at a certain point) out of frustration and seemed in overall pain. I have read that the episodes ARE painful and some even compared them to feeling like you have been poisoned. Bless his heart, every time it really wears him out. By Friday, he was starting to feel a bit better, still worn out but better. Also, Thursday he was absolutely parched, he drank so much liquid/fluid...it almost seemed abnormal. The scary thing was he was not peeing and the nurses were worried we would need to start IV's to ensure he was not dehydrated but after 30 ounces of fluid by mouth we decided to wait the night out. The next morning Jonah's neurologist said that this was also part of the episode, the excessive thirst, not to mention his fevers had continued over night and the influence of the sweating from the episode on Thursday would both have added to that need to drink so much. By the time we were discharged and sent home, Jonah had good diapers and seemed to be mostly back on track.

I was terrified last night as Jonah woke after only a couple of hours of sleeping. He was sweating profusely again with a good deal of shaking going on. I was terrified another episode was starting but after a warm bath and some rocking, he was ready for bed. I really think he was still just worn out. Today however, he seems to be back to his mostly cheerful, pleasant self.

We are praying that finally, perhaps after all these months we have an answer. As much as the diagnosis is not something we are pleased with and it seems that it is an unusual diagnosis so in talking to other parents with children who have Cerebral Palsy and seizure issues I am not getting a lot of feed back about similar diagnoses. BUT it is an answer and most likely a direction to take and Jonah cannot continue to have these episodes, they will over time cause issues with his heart if they continue to be untreated.

I still plan to get a second opinion, especially considering the seriousness of the issue. UCLA has been awful in trying to make an appointment. They have a minimum of a three month wait list and won't even talk about scheduling Jonah until they have all his records to first review. So we are battling things out, trying to transfer paperwork from one hospital to the next and then wait to see. I plan to try a contact at Stanford next week to see if we could possibly manage an earlier appointment.

Kristi with Blind Babies made a stop in to see Jonah at the hospital. She spent some time observing Jonah's behavior and talking to us about his episodes. She knows the neurologist at Stanford and has great respect for him, so she made the suggestion we pursue meeting with him. Kristi gave her input regarding some of Jonah's vision issues and some of his recent nasty behaviors he has picked up (mainly the hitting himself in the face when angry, frustrated, bored, etc.) We have started pressure point therapy several times a day to make sure his joints are getting stimulation as part of the hitting is definitely a sensory stimulus issue (his body not getting the proper amount of stimulation because of his physical disabilities) BUT it has become a behavioral issue for Jonah and a way to get attention so we are having to battle how to stop the behavior and help him understand it is inappropriate and a different way to communicate with us. It is slow going, Jonah is still not verbal per se, he uses Ma-Ma for me and Da-da for Shane and can mimick many different consonants, even picking out the beginning sound of words we work on with him (for example if I say, "Jonah look at this ball, ball Jonah!" He will mimick the "b" sound). BUT this is limited so helping him learn words for what he wants is slow coming and the sign language is also slow going as I am sure with his vision issues using ASL is going to be a slow process. He is a bright child, much more bright then most would think with his varying disabilities though and this gives us hope that we can continue working with him.

Thank you everyone for keeping the boys in your prayers and for your words of support. This has been the toughest journey for both Shane and I. There is no preparation for raising a special needs child and the road to knowledge is long and challenging. However, I can say that with this experience comes great empathy for others and a great understanding of the Plan of Salvation and the gospel of Jesus Christ. I have learned how precious life is and how God has a plan for ALL of us, even those of us who have disabilities. I have also learned how important it is to remain positive, to enjoy and love the simple things. Jonah is the most pure, happy and easily pleased child I know. He does not mull and fret over his difficult situation in life, he does not blame God for the dozens of surgeries and procedures and disabilities that he has gone through and continues to deal with. He just loves everyone and loves life for what it is. Don't we all have much to learn from this example?

I am grateful for Easter tomorrow. I am grateful for the Atonement, for the love of Christ and for the knowledge that we will all conquer death because of his sacrifice and receive the gift of resurrection and perfected bodies some day. We are blessed in so many ways.

For those of you wanting to know, Noah's pyloroplasty was canceled until the 21st of April due to his recent ear infection. We are desperately trying to keep him healthy (but he has a bit of a cold this week so keep him in your prayers specifically to stay healthy) so we will not have to yet again reschedule his surgery. His eating has been nothing short of awful. He throws up, literally, at the sight of food and sometimes without even provocation. The illnesses have caused great upheaval in his eating habits and all we can yet hope for is that this surgery will help him. If not, we may be facing another fundoplication surgery as Jonah underwent last August.

Aside from this, Noah continues to amaze us every day. His vocabulary continues to grow and he is doing all the normal things a 2.5 year old should do. God has a great mission in store for Noah and his life has been spared for a special reason. We hope we live in accordance with God's will so we will be inspired in raising him to fulfill this mission and be a kind, caring young man.

Thank you all again for your support. Thank you for continuing to check on our family. We wish you a happy Easter tomorrow and that you will feel Christ's love for each of you.

2010-03-15T20:58:00.000-07:00

I cannot believe it has been so long since I last posted on our blog site. I really am sorry to anyone who follows what is happening with the Hanna family here. I have got to try and be better! Lately I find myself being on Facebook more and more.

The past month has gone quickly. We have kept busy with Richardson Center classes, appointments, play groups, my new M.O.M.'s Club (Mom's of Miracles) and everything else that seems to come our way. We did start a new round of illnesses this week. Jonah has an ear infection and we are waiting on blood work to see if Noah is also developing an infection. Both took their turn being very fussy last week, especially Jonah and now I know why!

It seems that February went fast and now March is going just as quick. Shane and I did get out for Valentine's Day thanks to Grandpa Langston insisting we get away after the RSV hospitalization with both boys. Shane and I spent a weekend in Los Angeles, going to the beach, eating at our favorite restaurants (Melting Pot, etc.) and just enjoying being a couple. We were also privileged to see the adoption finalized for the Haney family. They adopted their foster daughter of over a year (Haylee). I attended their legal proceedings on Friday and Saturday we went to the temple to see Haylee sealed to her family. Sunday Shane participated in the blessing circle. Haylee is now officially a member of the family and we have loved being a part of the experience! Noah enjoys running around with her and having a good time at play groups.

I decided to sign Noah up for a tumbling class once a week and Haylee and Shirley go too. Unfortunately we stayed home last week and this week is not looking much better so hopefully we do not miss half the classes!

This Saturday is the 17th Annual Blind Babies Beeper Egg Hunt. We are excited! This was so much fun for the boys last year. I really am looking forward to it again. I love that they do special things for children with blindness and the very brilliant, talented and compassionate Kristi Spaite is behind the event. I recently was able to help organize an in-service at the local therapy office and she traveled in to Bakersfield to speak to a group of therapists and early intervention specialists about cortical blindness. It was an amazing training and I know that everyone who attended went away with a lot of good information to implement. This has been a sore spot for me all along, Kern County has the absolute worst vision program/early intervention program ever. We never see the gentleman assigned to Jonah because he has over 90 cases right now, it is just so complicated. Even when he does make visits I don't feel he leaves us with much structure our helpful information. If I compare what we receive against the program that my good friend in Georgia has for her son with CVI it is beyond pathetic. So for now, the best thing I figured I could do was invest in the local program by getting therapists/educators the right kind of training to really help these children. It is a start. If money was not a concern, I would absolutely be behind both a children's hospital and a charter school for the physically disabled in Kern County. It appears after conversations with individuals in the school district and my own observations that most money is put in to autism even though I have no doubt that those with Cerebral Palsy make a large percentage of the physically disabled. I wish I had more time and energy, I need to be the voice behind getting this group of people more of the resources that they need.

We have also been exploring other options for our family. It is obvious that a long stay in the area is just not possible. The constant driving back and forth to the Madera hospital, lack of good pediatric care, minimal resources for therapy intervention, etc. are so stressful on us. We are praying for direction and guidance in making the right choice.

Don't forget, if you have not had the chance that the March for Babies walk is coming up in April. We are still raising money to support the fight against prematurity.

Here is the link if you would like to donate to our team's goal:

Team: Noah and Jonah & the M.O.M's Club (Mom's of Miracles) of Kern County

Thank you everyone who keeps up on the happenings of our little family. We have much yet to learn from our boys but every day they teach us about the importance of loving, laughing and appreciating life for all that it offers and most importantly, not taking for granted what God has given to us. Every day is a blessing.

Until our next post.

2010-02-18T17:17:00.002-08:00

All dressed up for their first day back to school! The boys both enjoyed their first day back to the Richardson Center today. GI Clinic went well on Tuesday. Jonah weighed in at 27 pounds, Noah 24 pounds. Hurrah for Jonah! We have worked very, very hard to make sure he would gain weight. Thank you everyone who fasted and prayed for Jonah the past couple of months. Your faith has blessed our family once again. Jonah is out of the clear with his weight issues for now. We get to return back to working on textured food with Jonah and hopefully will make progress with the foods that he tolerates. This is just a snippet of what has been going on, more later!

2010-02-18T17:17:00.001-08:00

2010-02-15T22:31:00.000-08:00

Friends and family,

Many of you know our story with prematurity and the ongoing challenges that Noah and Jonah face as a result of being born at 24 weeks.

That is why I have joined the March for Babies walk which benefits the March of Dimes. Our team has joined thousands of compassionate teams across the country that support March for Babies. Won′t you please help us in this worthy cause?

Join us in the walk that helps all moms and babies.

The money we raise for March for Babies will help:

...support all-important research offering preventions and solutions for babies born too soon or with birth defects

...educate women on things they can do to increase their chances of having a healthy baby

...provide comfort and information to families with a newborn in intensive care

...push for newborn screening and health insurance for all pregnant women and children.

Please help our team help babies. We invite you to sign up and join our team on the day of the walk or if able, offer a donation online (every penny counts!).

Click on the following link if you wish to donate and support us:

Team Noah and Jonah

Thank you, everyone, for all your support! We love and appreciate you!

2010-02-12T14:48:00.000-08:00

Friends and family,

My sister, Valerie, is in her grad program at George Washington University and is doing a blog and discussion group for mothers with children with special needs. She needs your help! Please go to www.mothersofmiracles.org and click on discussion board (on the right) and join her discussion group. The more people that come and comment on her website, the better grade she gets. This is a quick and easy service project and would help my sister out A LOT!

2010-02-11T23:09:00.001-08:00

Well, I am not even sure how to some up the last two weeks. It has been one bumpy ride. Over a week ago things started off in the normal fashion on Monday the 1st of February. Noah had started with a runny nose over the weekend but nothing that did not appear to just be allergies. However, Monday night brought little sleep and a lot of throwing up of mucus as well as a very flushed and feverish Noah. By morning, we knew something was not right. We had a scheduled appointment with a surgeon to talk about the pyloroplasty for Noah and we decided to go through with the appointment as meeting with Dr. Hodge takes weeks. We did meet with Dr. Hodge but by the end of the meeting we knew we were going straight to the ER to have Noah looked at. We had thought of returning to Bakersfield and checking in to see Dr. Ho but I felt strongly that should Dr. Ho think that Noah need to be admitted to a hospital we would be looking at a return trip to Madera. So instead, I headed straight to the ER. It was absolutely crazy busy. We waited hours to finally meet with the ER doctor. They took Noah back and immediately started breathing treatments but the nurses and RT thought that Noah sounded mostly clear and that he possibly had a cold. The ER doctor (thank goodness) felt prompted to keep Noah overnight because of his pulmonary history and by morning Noah had worsened, even with the continuous treatments. The next day, the pediatric doctor decided to run the RSV test on Noah. At this time (Wednesday), I knew that Noah had RSV. It must have been that motherly instinct, I'm not sure, but something told me this was the problem. To worsen my hysteria, Noah passed two large, bloody stools. We immediately started a probiotic as the doctors/nurses suspected C-dif, which is a condition that can develop as a result of high antibiotic use (basically the good bacteria is lost and replaced with bad bacteria in the intestinal tract). The next day Noah was started on the Flagyl antibiotic to battle the C-dif. The RSV swab returned positive and Noah was put in to isolation. By Thursday morning, Noah's conditioned had worsened and after a chest x-ray and blood work pneumonia was confirmed so a second antibiotic was started to battle the pneumonia. Poor baby. I truly was beside myself. I could not believe that poor Noah was battling three issues at once! However, RSV does and can often cause pneumonia, especially in those patients with a weaker pulmonary situation. Friday night was very scary as Noah's oxygen saturation was not doing well and we had increased Noah to 3 liters of oxygen. The RT's/nurses were talking about a high flow oxygen system and starting Noah on 7 liters. I started to panic thinking of the possibility of failing on this system which would ultimately mean another ventilator situation. Thank goodness the good Lord heard our urgent prayers and Noah stabilized overnight.

In the middle of this, Jonah started having similar symptoms Friday morning. We had flown Grandpa Langston in the Wednesday before due to my suspicion that Noah had RSV. Grandpa was flown in that night and was at home taking care of Jonah. Grandpa ran Jonah to the pediatrician and an office swab tested positive for RSV. So Grandpa ran Jonah down to the Madera ER with the positive results and by Friday night Jonah had joined Noah. Oh my goodness, at this point we were not sure what else could possibly happen. I was grateful to have Grandpa, although it meant bringing Jonah with him. Shane also joined us and relieved Grandpa and I Friday night so we could rest at a local hotel. I was truly exhausted as I was suffering from little sleep and being closed up in Noah's room without much of a chance to leave. Noah has a severe anxiety of hospitals and will cling to you 24 hours a day during his stay, even putting him down to use the restroom would include a screaming fit until you were able to pick him back up. I was so exhausted from sleeping on the hard hospital bed that Friday night I was exhausted and thankful for a bed that was not hard to sleep on nor involved being woke every couple of hours or more often dependent upon Noah's various monitor/alarms.

Grandpa and I returned Saturday morning and gave Shane a break. He checked in to the Ronald McDonald house for Saturday night and relaxed for a couple of hours before returning. We managed the rest of the weekend in this fashion. To our surprise Sunday morning the doctor decided that Jonah was stable enough to be discharged and finish his recovery at home. Grandpa returned with Jonah and Shane left later that night in a rental car to return to Bakersfield.

Finally Tuesday, Noah started to wean down considerably on his oxygen. I prayed with a lot of fervor Tuesday night that we would be allowed to leave Wednesday for home. Tuesday night Noah took mostly care of the problem by removing his cannulas during a temper tantrum and doing well on room air. I woke up Wednesday with a good feeling we would be going home. We waited all morning for the doctor who strolled in around noon. To my frustration Noah had fallen asleep and when the RT returned to do a treatment he was satting around 88-90!! Of course, at this moment the doctor walked in. We sat and talked about what to do, I explained that when awake he was satting well and Noah woke up during this conversation and sure enough his sats were up in the mid 90's. The doctor insisted on discharging with oxygen, I explained we had everything at home and could handle this and even explained that I was to the point of going home no matter what (they wanted him completely off oxygen) because we had the full ability to manage his short term need for oxygen. The doctor finally agreed but said we would need the new oxygen order to be submitted to insurance, etc. and that may not be completed by the end of the day. I said not a problem, I could handle putting pressure on our insurance group to get it done. I truly don't think he believed me but it helps that I have a close relationship with one of the agents in the authorization department and she knows me by name. So after he left, trying to convince me we'd be at the hospital one more day, I immediately got on the phone and called Claudia. She gave me her fax # and told me to have the case manager get her the new order asap. Within 20 minutes the new order was through and they had called the local Apria group. Two hours later, we were still waiting and I decided to go pick up Noah's meds to return home. I called the Fresno Apria to find out where the delivery was and how long we would be waiting (I was a Mom on a mission at that point). They explained to me that they were not able to deliver the equipment until after 7:00 p.m. I said that was just not acceptable because I had a two hour drive home and why could I not pick up the equipment? Well, of course! They said. So I drove the 15 miles to pick up the equipment and within 45 minutes we were FINALLY out the door. That is one day that I was grateful for my tenacity and persistance. If I had sat around waiting, waiting we never would have got out of that hospital until very, very late. As it was we did not get home until 7:00 p.m. I was so worn out between dealing with Noah's situation to battling the doctor to get my son home (who was declared fine aside from his ongoing need for a low dose of oxygen which HELLO I think after over 18 months I can HANDLE a 1/4 - 1/2 liter of oxygen and nebulizer treatments) that I was more then thrilled about getting a shower and going to bed.

I have never appreciated my own bed as much as I did last night. I am so, so grateful to be home with my boys. Thank you to everyone for your prayers, text messages, emails and everything else (dinners, etc.). We have such a great network of family and friends. We could NOT do all of this without you!

With Grandpa in town and insisting that we take a break for Valentine's Day, Shane decided on a hotel near a beach in Los Angeles for the weekend. I am thrilled, I love the ocean, it is so peaceful and calming to me. We leave tomorrow night and I look forward to relaxing and enjoying some time with Shane.

Thank you again everyone. Keep praying for our boys. We hope this was the last time for a long time that we will see a hospital. Also, I neglected to mention that Jonah is recovering at home. He is still symptomatic with RSV but doing much better.

2010-01-31T21:42:00.001-08:00

It has been a bit since my last update so I wanted to let everyone know what has been happening in the Hanna house.

Jonah continues to wear his heart monitor. There have been no episodes (of course, somehow I knew this would be the case). Both boys are finally over another round of colds but are doing much better. Jonah's eating is still up and down. We had several awful days last week but he turned around toward the end of the week. I do think the Periactin is helping some. Shane helps in the morning getting the boys fed, etc. while I am in the shower and he forgot a couple of days to give Jonah his Periactin. He ate just terrible the days that he did not get the Periactin so I do think the medication is helping.

Noah's allergies are bothering him and consequently his eating has also been awful. I am at my ropes' end with all that has been going on with his up and down eating woes. I so worry that he is 27 months and only 23 pounds. He has a lot of catching up to do. So, after much thinking Shane and I agreed to meet with another surgeon in Madera regarding the pyloroplasty. This procedure has been suggested by the GI Clinic for some time now but when we met with Dr.Tamura regarding Jonah's fundoplication, he said he is not an advocate of the procedure so that stopped us from pursuing the surgery with Noah. But since that time they repeated Noah's gastric emptying delay study and it was even worse then it was several months ago, which means that even with him being mobile and able to get around he is NOT doing better with getting food moved through his system. I plan to really ask a lot of good questions Tuesday, including what the likelihood of seeing better eating habits/appetite out of Noah will be if we do go through with the surgery. I hate to put Noah through surgery, he has not seen anything in way of surgeries since the NICU (believe it or not) and only been hospitalized twice since coming home two years ago (which is amazing for a micro preemie). So we will really have to pray about this procedure but I am looking forward to the appointment and getting more information from this surgeon.

We also have other possibilities that we are pursuing right now as a family. I really wish I could elaborate but everything is so preliminary right now that all I can say is keep us in your prayers and that the Lord will guide us in making decisions in the next couple of weeks.

Shane and I stay busy (of course). I am still working with the 14/15 year olds in our young womens group at church. I love every minute of it. They are such sweet, righteous young women who try very hard to make good choices every day. It is a tough world to be in and they happen to be in an area where they are very much a religious minority so they have a lot of people questioning their beliefs but they are strong in their convictions and an example to me. I have learned a lot from them. Plus, what a fun age to teach! They are so full of energy and all the wonderful possibilities that are yet to come...it is such an exciting time in their lives. Shane is still working as the director of activities although he has been told they plan to release him (it is a big calling with a lot of stress attached to it). Jonah and Noah seem to be doing well in nursery. Noah is struggling with sitting through the first hour of church and we are working on what it means to be "reverent" instead of throwing tantrums the entire hour we are in our Sacrament meeting. *Sigh* Let's say it is an ongoing process.

We miss Grandpa and Grandma Langston and Hanna too. We were lucky to have both sets of grandparents down for the holidays and January. It was so much fun having them here and enjoying their company. It seems a bit more quiet with everyone gone now.

I can hardly believe tomorrow is February. Before we know it, Valentine's Day will be here!

Thank you everyone for continuing to follow our boys. Keep an extra prayer in your heart for us this week. We have a lot of things happening this week and decision to make so having the knowledge that we have others thinking and praying for us will really help.

Stay tuned. Hugs for now.

2010-01-20T13:45:00.000-08:00

Thank you, Brooke and Holly, for sharing this very special article with me. It comes on the heels of a very emotional week with our Jonah and so the message was much needed and well received. I love seeing someone put to words and music all the emotions a parent raising a special needs child may feel and how God feels in watching us through our journey.

I know you will enjoy this link. I can't wait to buy the album and enjoy the music.

Janice Kapp Perry, Far Different Places

2010-01-19T19:12:00.000-08:00

Well, today's visit did not provide much "new" information. We first met with the neurologist, a very kind, young specialist. After describing our past couple of episodes his first comment was, "well these are not typical seizures." We talked more about Jonah's history and he did agree that we could not rule out the possibility of seizures. Jonah's latest EEG was considered abnormal. The neurosurgeon said that even with Jonah's grade IV bleed at birth his brain should have shown more development and activity at this time than the EEG showed. He did say it was a tough call as this was his first EEG (so he did not know if this would be Jonah's baseline) but this did raise questions regarding possible seizures and their affect on Jonah's neurological situation. I guess this is not too surprising as Jonah did suffer the most severe brain bleed at birth, his brain activity will always be abnormal. However, for the specialist to even think that Jonah's EEG was on the abnormal side as the brain can rewire itself (called neuroplasticity) confirms worries I have been suffering from recently. Is Jonah making progress? Why so slow? It is heart wrenching to see the small progress that he makes and how much he struggles. Why are some other kiddos with grade 4 bleeds advancing quicker? Why does Jonah struggle so much? Maybe there is more to the picture then we understand. As follow up, the neurologist wanted us to first follow up with cardiology and after the 30-day monitor, if nothing was recorded of significance then we would schedule a 24-hour EEG with sleep time at the hospital. He did say that although abnormal the recent EEG did not show activity in the area of the brain that would cause epileptic episodes but that a better picture could be obtained by monitoring the brain for a 24-hour period that included sleep time as during sleep the brain is more likely to show epileptic activity if the individual is at risk for or will develop seizures.

After neurology, we met with cardiology. The wait was just awful (an hour) and Jonah had absolutely no patience. He had an early morning and was not able to sleep and is generally somewhat uncomfortable and impatient when in an environment that is not familiar to him. Unfortunately right now, this brings with it some awkward behaviors. Jonah's biggest issues right now when it comes to impatience, anger, or boredom are banging of the head or hitting himself with his right fist. *Sigh* It makes for quite a show, I am sure. I do try and stop this when possible but as with everything that has come before it takes time for him to grow out of it. I pray this happens and quickly. Anyways, finally we were able to get in and Jonah's King of Hearts was set up. He will wear two patches on his chest and be attached to a small box which records 30-second intervals of his heart rate (records and then replaces with a new recording). If Jonah goes in to an episode we press a button that records 60-second intervals and we can do this up to 3 times. Once completed, we have to get to a land line and call an 800 number to transfer the information to a data bank where they track the information to be given to the doctor at the end of the 30-day period.

After, Grandpa took us to Claim Jumpers. Yummy food! It was a nice break as Fresno has a Claim Jumpers and Bakersfield does not. Next, Grandpa drove home through the awful rain and we finally made it back to Bakersfield after 2:00 p.m. It was a long day but at least we accomplished a few things.

So this is our latest. We are all still trying to overcome colds. Noah ate awful today (his usual when he gets sick) but was still full of energy and running everywhere. Jonah has an awful, runny nose and lots of congestion. I am suffering from the same, plus coughing and a nasty sounding voice. Hopefully the worst is over! Too bad we are sending Grandpa and Grandma off with a round of illness here at the house. I hope they go home healthy (so far, so good).

Thanks everyone for your sweet comments and concerns. Keep praying for our babies, that is all we ask and is the most important thing that can be done.

2010-01-18T17:44:00.000-08:00

Friends,

Sorry it has been so long since our last posting! It has been just hectic here and I've only found time to update Face Book lately. I have definitely neglected my blog!

I can't believe it has only been a month. A lot has happened this month.

First, Jonah had another potential seizure episode about two weeks ago. It came on the heels of his being very sick (I am not sure yet but this may be a trigger for his episodes as the past two seem to happen right after an illness). This was an awful episode of tachycardia. We had a church ward friend that is a GP (general practitioner) check Jonah for symptoms of pneumonia or anything serious enough to warrant getting to an ER immediately. After checking him out and finding that his lungs were clear, ears fine and throat fine he told us to do what we were comfortable with but to get him to a hospital because of his high heart rate (thank goodness we have a pulsox in our home). So we took Jonah, with equipment, down as quickly as we could to the childrens hospital in Madera. His elevated heart rate lasted all in all for four hours. Yup, four hours ranging between 180-190. Finally, right upon our arrival, his heart rate lowered and he passed out from exhaustion. Shane used a simple, to the point analogy. Imagine running a marathon beyond your ability without stopping for four hours....that is pure exhaustion. Frustrating for us because we checked in to the ER with Jonah sleeping but stable. All they had was our description (once again) of the event. Jonah was in the ER back in November for a similar episode but by the time the ER doc saw him he was stable so the doctor said could be a seizure and sent us home to call his neurosurgeon. Same thing this time, although because of the length of time with the tachycardia I insisted that a cardiologist be contacted. At least we went home with a referral for a 30-day monitoring device and a referral to Neurology to get a work up on Jonah and discuss "other" testing for seizures. Both specialists that the ER doc spoke with agreed that all the symptoms together (rapid eye movement, claminess, tachycardia, jitteriness, in and out coherence of surroundings) pointed to a seizure. Great, tell me something I don't know! In the mean time they won't treat anything until they have something on paper (test result, etc.) showing Jonah really does suffer from seizures. So how long will it take before we are lucky enough to be testing Jonah and actually capture one of his unpredictable episodes?? My worry is that his little heart won't take several more of these tachycardias and I do not live in an area where there is competent pediatric care. Tough position to be in, living two hours away from the nearest children's facility that is capable of handling my child. *Sigh*

Tomorrow we meet with the neurologist for the first time. We will see what they recommend for testing. The ER doc did talk about repeating Jonah's EEG (which really I feel is not that helpful unless you happen to be in an episode or they are able to induce an episode during testing). I am hoping that tomorrow the neurologist will be more aggressive and perhaps order testing that extends beyond a couple of hours, maybe a 24 hour test or one that he can wear and it record information over a month or so (like the heart equipment he is receiving tomorrow). He picks up cardiology equipment after neurology. The test is referred to as the King of hearts Monitor. Jonah will wear it for 30 days and should he experience another tachycardia it will record everything for evaluation.

Needless to say, we have been somewhat preoccupied at this house! On top of this event, the boys were both sick as can be with bacterial infections and once again this past week they started to get sick again. Noah seems to be somewhat recovering but Jonah and I are very ill. We went to the pediatrician this morning and he did not want to give antibiotics yet but gave us lab slips should things not clear up in a day or two. I even had him look me over as my doctor was not in today. I am completely miserable, thank goodness Grandma and Grandpa Langston are here and have been helping with everything. I have been able to rest and hopefully in the next day or two I will feel better. I hope. I was actually hoping for some antibiotics today, I hate being miserable and it makes taking care of the boys so much more challenging.

Today the boys did not have school and I canceled therapy as they are ill and just need to be home recovering. The weather was just awful, awful. We woke up to an awful wind storm that bent and eventually broke our patio umbrella. Aargh! This is not very cheap to replace but I guess we have a few months until spring and it is just a "thing" and life will go on. Still, it made for a frustrating morning.

Grandma and Grandpa Langston return home Friday. We will miss them. They are such a huge help and thank goodness they were here during Jonah's last episode as we left Noah at home and Shane and I rushed Jonah to the ER. It would make life so much more simple having close family that we could count on but for now, God has other plans so we will be grateful instead for their frequent visits. Both sets of grandparents go above and beyond in their help.

I will update the post later and give information about Jonah's appointments tomorrow. Noah continues to do well. We actually got a bit of bad news last week. Blue Cross decided to change it's HMO plans and now charges a $20 co-pay for every therapy session whereas last year they did not charge any co-pay. That is a hefty bill to pay when you have 8 visits a week and definitely affects the budget. Eventually Medical will reimburse for Jonah (but that takes months), so because of all of this we dropped Noah's occupational therapy. He tested for his actual age with his last assessment (not even adjusted) so I did not feel as badly dropping the OT. He just goes for PT now, which puts us down to 7 visits instead of 8. Shane is due for a cost of living increase and is trying to negotiate the cost of the extra visits but his boss has been MIA about his Christmas bonus (although when he inquired he was told that he was to get a bonus but that his boss, after leaving for vacation, had remembered he'd forgotten to take care of the management bonuses.....we are yet to see the bonus). So we are frustrated to say the least. Pray that things will go through and that somehow we can make this new co-pay expense work out. It is tough not being able to work, especially in situations like this. I keep thinking how much easier it would be if I could work. I know it is not the right choice for us now but it is moments like this that really frustrate me.

Thanks everyone for your prayers and support. We love you all.

2010-01-04T15:41:00.001-08:00

Disneyland New Year's 2010! The boys thoroughly enjoyed themselves and were given the royal treatment as this was their "first visit." They were even given first visit buttons.

2010-01-04T15:35:00.000-08:00

2009-12-27T23:51:00.001-08:00

Disneyland here we come: 4 days and counting!

2009-12-27T23:50:00.000-08:00

2009-12-27T23:04:00.000-08:00

Christmas Day: the boys enjoyed opening their new gifts from Grandma and Grandpa Hanna. Noah's favorite toy is his new dancing/singing Elmo (quite a vocabulary that this little guy has!), he also got a ride along Matar truck (from Cars). Jonah got an amazing karaoke machine, he giggled and giggled over hearing his voice when using the microphone. I really think this will be a fun toy to encourage Jonah's speech. He has a long ways to go but loves to interact with us and tries very hard to mimic at least a consonant from words that we say which is wonderful. He now calls Grandma Hanna "amma." Noah is also using more words and even combining a few. A few days ago he declared, "No, mine!" when we took away a toy. Great progress Noah!

We are excited for Disneyland later this week. I have been reading up on their services available to disabled individuals. They really do go a long ways to accommodating ALL children, hurrah for Disney! I think the boys will have a wonderful time. Grandma and Grandpa Hanna were able to schedule a night at a timeshare within walking distance of the park so we can both walk to the park and enjoy the fireworks for New Year's Eve that evening. It will be a neat experience for everyone. It will be our first amusement park trip with Jonah and his new chair so wish us a good experience!

We hope all of you had a wonderful Christmas and will enjoy the New Year as it approaches this week.

2009-12-27T22:40:00.000-08:00

2009-12-27T22:33:00.000-08:00

Christmas Eve 2009: we enjoyed a family program which included hymns, a story from Grandpa Hanna, the reading of Christ's birth from Luke and an animated story of the nativity. After we all opened one gift. After the boys went to bed we enjoyed movies and games. It was a fun night and we enjoyed having Grandpa and Grandma Hanna.

2009-12-27T22:14:00.000-08:00

2009-12-26T22:56:00.001-08:00

Just a quick posting. I plan to get photos on the blog soon of our holiday with Grandma and Grandpa Hanna.

It was a wonderful holiday. We enjoyed lots of giggles and laughter from the boys and that is what Christmas is really all about after all. I have always felt Christmas is about children and this year confirmed what a joy children are.

By far the favorite gifts this year where the dancing, talking Elmo for Noah and a pretty darn neat karaoke v-tech keyboard for Jonah (he gets quite a kick out of hearing his voice on the microphone!)

We had lots and lots of good food (sadly) and enjoyed playing lots of Wii. Grandpa Hanna received his Wii for Christmas and we have enjoyed it quite a lot the past 24 hours. We have played everything from bowling to golfing.

We are looking forward to Disneyland next week. I have heard good things from other parents who have children with special needs. Disneyland is supposed to be very accommodating for children with special needs so I hope Jonah will enjoy the experience.

Grandpa and Grandma where able to get a room at a local time share so we will be within walking distance to the park and able to see fireworks at midnight for New Year's. It will be a lot of fun!

Shane gets this next week off and we are grateful he will be home with us.

I will post Christmas photos soon. We hope each of you had a wonderful holiday!

2009-12-20T22:08:00.001-08:00

Just one more quick posting.

Although we have our challenges and the past few weeks have been worrisome with Jonah's poor eating habits, I had a peaceful moment recently that has stayed with me.

It came to me one day that the many, many prayers offered in behalf of our family have sustained us through the past two years. I know that I have said this before but this moment came to me so clearly that I know I was being reminded that we are being watched over.

So, to all of you who have prayed and continue to pray for our family I am sending you a sincere, heartfelt thank you. God bless and Merry Christmas.

2009-12-20T21:45:00.000-08:00

Christmas Blessings! The boys looked so adorable today in their Christmas outfits.

We are happy that our Christmas season is winding down. It will be nice to relax and just enjoy family this week. Grandma and Grandpa Hanna are in town. We will have a fun week together and Tuesday will enjoy Shane's 35th birthday. (LOVE YOU SWEETHEART!)

Tomorrow we have the first test for Jonah. They will be doing an upper GI exam to see if he has developed any hernias or other issues from his August surgery that could be causing complications with his appetite. PLEASE pray for Jonah. Right now we dread meal time as we know it will mean holding Jonah down and usually syringe feeding him his formula to assure he gets in the right calories. NOT FUN.

We are praying for a miracle that we will find an answer to Jonah's feeding issues WITHOUT surgery and if it were the only thing I received this Christmas season, I would be the happiest woman on earth.

Merry Christmas!

2009-12-20T21:38:00.000-08:00

2009-12-14T17:30:00.000-08:00

I wish I had good news to share today.

We headed down to Fresno for three separate clinics at the hospital. First, we hit GI Clinic for both boys. This was probably our worst visit. For the first time EVER, Jonah weighs less then his brother. This is NOT good. We have been battling his horrible appetite ever since his fundoplication surgery in August. We started Periactin back in October in hopes it would boost his appetite but I am sad to say it has only helped marginally. I thought perhaps he had just hit a plateau but imagine my shock when they weighed him only to discover he had LOST weight and was thinner then Noah. It does not help that he has over an inch in height on Noah. This makes him look even more skinny. Noah did gain a bit of weight/height in the past couple of months. He is still small but because he is moving forward they are not yet worried about his progress. The first suggestion for Jonah was, "well...what about a g-tube?" Well, guess what. Have we NOT had this discussion before? I swear I feel that I am constantly repeating myself with the same doctors who see us every few months. G-tube is the LAST option, absolutely the last option. Jonah has had four abdominal surgeries and pursuing an additional surgery is not something I take lightly. Also, I do not want to take any possible developmental progress from Jonah and adding a G-tube will not help his possible ability to feed himself some day. Yes, there is a possibility we can pursue night feedings and still possibly maintain feeding during the day but I have a sinking feeling that if we pursue this option Jonah will have it for life and it will affect his ability to eat independently.

So, after discussing options the doctor agreed to pursue a couple of tests to see if the problem is related to his fundo. First, we will do an upper GI study to see if any hernias have developed due to the procedure. If nothing is found that could be causing issues we will then do an endoscopy to see if the fundo is correctly positioned. If this also shows nothing and in three months Jonah has not gained weight....they will start the discussion of G-tube.

I can definitely say I am stressed out. We have three months to get weight on Jonah. The GI doc did give us two cans of DuoCal and asked that we start adding a few scoops to everything he eats (Noah too). She said the DuoCal should be more easily digested then the Benecalorie that Noah was on for such a long time. I hope that both boys will tolerate the DuoCal and that it will help both gain weight. Also, for the first and only time, I hope that something will be found with these tests that can give us a definitive reason as to why Jonah has suddenly lost his appetite. There is no real reason for his weight loss other then something related to his fundo surgery from August.

After GI we went to see the surgeon who did Jonah's fundo and he basically agreed with GI and even made the frustrating comment that he really did not understand what was going on with Jonah. He said that loss of appetite is not a common risk of a fundoplication and he certainly does not understand why this has become an issue for Jonah.

Please, pray for Jonah. Pray for all of us. We really need these next three months to make the difference. We are trying so hard and have fought so much and given so much time and effort toward preventing him from ending up with a feeding tube.

Jonah also saw his eye specialist. Everything is fine from his November surgery. His specialist felt that his eyes showed improvement and was pleased with how well he seems to be using both eyes since the procedure.

After, we delivered hygiene kits that our church ward Relief Society assembled to the Bishop's Storehouse in Fresno to be distributed to those in need. We finally got on the road toward home a bit after 1:00 pm.

It was definitely a long day. Noah has much less tolerance for these visits. He does not handle having to be in one place without roaming around freely well AT ALL. In fact, I think the GI doc's comment about Noah's behavior today was, "Well...he certainly is wild isn't he?" Yeah, he is. He is a typical, high energy, in to everything two year old and spends only a few seconds on any one given thing.

So I am glad to be home. I am going to bed and then we will start the process again tomorrow. Oh! We also got Jonah transitioned to a big boy bed. He is now officially downstairs in his own room with his own set of big boy furniture. We set up the side rail tonight and washed his quilt and sheets. Tomorrow will be his first night in his own room. Such a big step! Eventually in the coming months we will transition Noah too. Right now, he would be much too big of a trouble maker to take him out of his crib.

That is the latest in the Hanna home. We hope you are enjoying the Christmas season. We love Christmas here in our home.

God bless everyone. Please keep our family in your prayers.

2009-12-11T18:49:00.000-08:00

The war is on.

These kids and their constant up and down eating habits are definitely wearing on the nerves. =)

Do you like the photos that show what the boys look like after eating? Today, Noah was in the mood to slap the spoon away and fling any food that got near his mouth all over the place. Fun stuff. Jonah loves to move his head everywhere in an attempt to avoid being fed and if we try and hold his head in place we get lots of screaming. We have to weigh which is worse, the screaming or a messy child once feeding is done (I will take the mess any day).

This IS worth the sacrifice. I keep telling myself that every day my boys are spared a feeding tube is a blessing and I HAVE to move forward with faith that some day it will pay off!

2009-12-11T18:45:00.000-08:00

2009-12-09T22:37:00.000-08:00

Photos from the Polar Express party at the Richardson Center today. The boys along with Allie Hanson and mom, Brooke, had a wonderful time! They got to meet Santa, ride a train, do all kinds of crafts, listen to the conductor of the Polar Express share his story and go home with a bag of treats. Plus they were able to wear their Christmas jammies.

What fun!

2009-12-09T22:32:00.000-08:00

2009-12-09T08:02:00.000-08:00

I know the power of prayer and I know how much each of you has helped us in our journey with Noah and Jonah, so because of this I am asking that you keep a little boy named Ashton in your prayers.

He is 4 years old and has Cerebral Palsy as well as severe respiratory issues. Right now he is once more been hospitalized up in Canada and is not doing well. Last night alone he flat lined twice and required CPR to resuscitate. The Mother is desperate for prayers and support and wants her son home for Christmas.

Please remember sweet Ashton in your prayers today. We are all in this journey of life together and God hears all prayers.

Thank you friends.

2009-12-08T19:37:00.000-08:00

Wanted to quickly share great news! Today I was talking to Noah's occupational therapist and they evaluated Noah to see if he needs to renew his OT visits. Well...he is doing everything he should for his "actual" age, not even adjusted! Hurrah! This was a mixed bag as I am happy that Noah is up to his age level for OT but this also means that insurance will most likely not renew future visits. I would rather he be followed until preschool to assure he is doing everything that he should be. BUT we will focus on the positive! Awesome job baby boy!

2009-12-08T19:32:00.000-08:00

Adorable bath time babies! I especially love the photo of Shane with the boys. Bath time is Daddy's time and the boys love playing with their Dad.

2009-12-08T19:15:00.000-08:00

2009-12-05T23:04:00.000-08:00

Santa Shane! Shane was asked a week ago to be Santa for our former church ward, Silver Creek. He had a wonderful time tonight. We got out after for dinner and this was our date night tonight. Shane loved it so much he thought of buying his own suit for future use and the most requested toy was...marbles! How funny!

2009-12-05T22:56:00.000-08:00

2009-12-03T14:56:00.001-08:00

Thank you for a kind friend who passed this poem on to me:

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth.

It was time again for another birth.

Said the Angels to the Lord above --

"This special child will need much love.

"Her progress may be very slow,

"Accomplishment she may not show.

"And she'll require extra care

"From the folks she meets down there.

"She may not run or laugh or play,

"Her thoughts may seem quite far away.

"So many times she will be labeled

"'different,' 'helpless' and disabled.

"So, let's be careful where she's sent.

"We want her life to be content.

"Please, Lord, find the parents who

"Will do a special job for you.

"They will not realize right away

"The leading role they are asked to play.

"But with this child sent from above

"Comes stronger faith, and richer love.

"And soon they'll know the privilege given

"In caring for their gift from heaven.

"Their precious charge, so meek and mild

"Is heaven's very special child."

2009-12-02T11:19:00.000-08:00

This will not be a usual posting. Instead, I would like to take some time today to be honest and forthright with my feelings. I believe and hope that in what I post I am helping others know how to best support other families and friends who are dealing with extreme health challenges in their own lives.

I am exhausted of people telling me that I was given sick/disabled children because I am capable of handling the situation better then they would be able to do. The truth is, God does not give us trials because we are "prepared" but because he wants us to "learn." God does not give unhealthy children to one couple and perfect, healthy children to the rest. This is NOT God's plan. Instead, God has a greater plan in mind. He wants us to reach our full potential and for some of us (for reasons we may not ever fully understand in this life) we are given children with disabilities and health challenges. What does this teach us? This teaches us compassion, patience, Christ-like love and what the true meaning of life really is. For me, it has also taught me about the ugly side to myself, the side that struggles day to day, the side that sometimes questions the heavens, and the side that, yes in some awful moments, sees my children as those around me would see them...as disabled instead of as gifts from God. Never in my life have I become more close to my weaknesses than through the challenges I have experienced in the past three years. Yet, is this not part of God's purpose?

"And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." (Book of Mormon, Ether 12:27)

I am still standing in the refiner's fire. My imperfections are probably too noticeable to others, even in my sharing my feelings today I am exposing my imperfect thought processes. However, I hope that perhaps in doing so, I will touch someone else, help another understand, and give compassion to him who is seeking it.

I want to live my life in a way that my Heavenly Father would be proud. I have a long road to finish and many, many diversions to my path that I must overcome. I do know, even in my most difficult of moments, that God will stand by me and not leave me. He will guide me through this process and I hope and pray that in the end I will find myself that much closer to his spirit and companionship.

Do I understand why Noah and Jonah were born so early? Do others look at them as being a burden on society, especially Jonah with his disabilities? No I do not always understand and yes others do comment and look at them as being liabilities. The truth is however, that God's plan is not designed by men. God has the ultimate understanding of why my boys started their mission so early and why Jonah has his disabilities. In fact, I feel prompted to share part of Jonah's baby blessing.

"Jonah, your Heavenly Father loves you. He has shown that love with the many blessings that He has already given you. He has watched over you in your trials and tribulations. He has guided your parents and loved ones. He has guided your doctors and nurses. He will continue to guide us so we will raise you unto the Lord to be a true child of God. Heavenly Father has a wondrous and amazing life planned for you; a life with service to your fellow men and God, with many blessings and responsibilities."

When I read the blessings of my boys I am reminded of their divine heritage and of their divine mission. Although I do not have a perfect knowledge as to why they must struggle so, I know that God does love them and that they are fulfilling their individual earthly missions.

So, dear friends, count your blessings in life and support those of us who are still amid the "learning" process which places us in the presence of trials. And if God calls you to a similar path, realize that it is for your growth and well being.

"Ask not for whom the bell tolls, for it tolls for thee." John Donne

2009-12-01T11:02:00.000-08:00

Well, our first week without Grandpa is off to a crazy start.

Thanksgiving was wonderful and we thoroughly enjoyed having Grandma and Grandpa Langston here. We were all sick last week. I started to come down with what the boys have had last Saturday afternoon.

Monday morning, Jonah woke up sounding awful. Both Noah and Jonah finished their antibiotics on Saturday. Jonah was having awful coughing fits and he started acting strangely in that he had cold sweats, was using a loud, unusual cry and his body was shaky. His strabismus was also out of control (rapid eye movement) plus his heart rate was in the 180's. I really thought he was having another seizure. I called the neurosurgeon and pediatrician and we made the decision to get Jonah immediately on oxygen and down to Madera Children's Hospital. We went in to the ER and were immediately seen. They did not feel there was enough evidence to support having a seizure but ran other blood work and a chest x-ray to see about pneumonia. Everything came back fine but to be safe we also did a CT scan to make sure his shunt was stable. After an exhausting eight hours we were finally let go. Jonah was so worn out yesterday, he literally slept in my arms all day while in the ER and was so pale. He definitely was out of sorts and I am still not convinced that he did not have a mild seizure yesterday morning.

We made it home last night and were so tired that both Jonah and I went to bed early.

Shane has been blessed enough to work from home yesterday and today so he stayed home with Noah and I plan to rest some today as I am still battling this ridiculous cold. The worst part is how exhausted you feel when sick with whatever bug it is that I am carrying around.

We are at least grateful that Jonah was not ill enough to be hospitalized. He does appear to be feeling much better today and we are thankful.

Thank you everyone for your prayers and well wishes and for remembering us yesterday. We are grateful for everyone's ongoing support.

God bless everyone during this holiday season!

2009-11-26T14:56:00.001-08:00

Below, I share with you my many, many blessings...

2009-11-26T14:54:00.000-08:00

2009-11-26T14:47:00.000-08:00

2009-11-26T11:38:00.000-08:00

Happy Thanksgiving everyone!!!

It has been a busy, crazy week and while the turkey is cooking and most side dishes are just waiting for some oven time I decided it is best that I post something as I feel I am neglecting my blog now that I spend more time on face book.

The boys have both been very ill this week. I finally took them both in Tuesday and the doctor could not find symptoms of an actual infection but said they were probably starting something and with it being the holiday weekend he started a course of antibiotics. I am so glad he did! Tuesday night Noah started a fever and coughed himself like crazy through the night. Jonah has been so stuffy and he has hardly any interest in eating (ditto with Noah). They both I think are over the worst of it as of today (thanks to the antibiotics) and because Grandpa and Grandma are in town to help, Shane and I have for the most part survived and been able to catch up on sleep here and there.

I am grateful today to still be standing after another crazy year of hospitals, surgeries, diagnoses, medications, and all the other crazy things that come with being a micro-preemie mom. I am grateful to have a supportive husband, no other man could have gone through this journey and managed the extreme stress the way that Shane has...plus he is able to comfort me through my difficult, emotional days and still love me. He is one incredible man and I am lucky to have him in my life.

I am grateful for my sweet babies, life may be hard but these boys are close to the spirit and bring such love in to our home. Jonah, especially, reminds us of the most important things that life has to offer and he reminds us that God is near to us. Noah is a bundle of joy, I don't think one day goes by that I do not find myself smiling at his toddler ways.

I am grateful for supportive parents and in-laws, especially Grandpa Langston and Grandma Hanna. They both have given several hours of their time to come and be with our family and help with our load of care. We would not have survived with sanity in place without their support. We love you!

We will be eating around the table soon and as part of our family tradition we will share a few things that we are grateful for and mine will include all those things I have mentioned above. I am also grateful for a home, food, clothing and employment....many things that a lot of people throughout the world do not have.

Everyone enjoy your holiday, thank you for your friendship!

2009-11-19T10:15:00.000-08:00

I am sorry I have not posted in some time. We have a few updates here at the Hanna home. Life continues to be busy. In regards to the boys, Jonah has done a bit better with eating since starting the Periactin. We still are not back to his normal love of eating but he has been taking food with a bit less fighting. We still have a ways to go but my hope is by December 14th he will have put on enough weight that the GI Clinic will be satisfied enough to let things go for the time being. Noah has come down with another cold (poor guy). We all seemed to get over this bug when Noah started again with a stuffed nose and congestion, now Dad is sick again too. Even poor Grandpa has taken his turn with this virus. Jonah finally goes back to school today (hurrah)! It will be good to get him back in to a routine. His eye is healing well and I do think we have seen improvement with how he holds his head (not so much leaning to the left now so he can use his right eye) and he does seem to focus a bit more with both eyes so hopefully this is a start in the right direction.

Thank you for those who have been praying for the Price family. They most definitely need all of heaven's blessings during this difficult time.

Grandma Langston flies in to town Sunday and we will have Thanksgiving here. I am excited for the holiday but a bit sad to see Grandpa return home. He is such an uplifting energy here in the home and these boys will miss him so much! Just Tuesday Grandpa took us to IHOP for breakfast and as he went to pay the bill, Noah could not see him and just burst in to tears. He is going to miss his Pa-pa very much! We will just have to convince Grandpa to come down again during the winter time. We enjoy his fun company. He is truly a Granmpa (ha ha!) He loves to do crafts with me, go to Michaels, enjoy shows, go out to eat, shop, you name it and he loves it. What a great Dad, eh? Plus his constant love for my boys is absolutely amazing.

Speaking of which, I need to get our Thanksgiving menu planned. I had great hopes of putting together my Thanksgiving and Christmas binders (plans, etc.) but I have just not gotten around to it. Too many projects I suppose.

I am proud to say that after much thought, I am trying to organize a local Mom group for Moms who have children with special needs. Shane helped me brain storm a cute slogan (The M.O.M. Club, Moms of Miracles) and I contacted the Director of Terrio Therapy to see if we could post a sign up sheet to see if we could garner some interest. I also spoke with Jonah's teacher at Richardson Center and in the end, everyone was thrilled with the idea. So we have almost a dozen moms signed up who are interested in a play group and if that goes well I may branch out and start doing a dinner out once a month just for Moms so we can get out and support each other. I plan to hold the play group at our local River Walk park which has walking trails and lots of play grounds plus a new Target next door so it will be nice for everyone. I hope this will be a positive experience and that we can enjoy getting to know new families and supporting each other in the blessings and challenges we all have of raising children with special needs. I hope this will go well.

Aside from this, we seem to be managing life at the break neck speed in which it happens (most days at least).

I am probably completely crazy but decided last minute to join some of the other church ladies to see the New Moon show tonight at 2:30 AM. I found out they had an extra ticket and they plan to do an early breakfast after. I am also going Monday with a big group that includes a lot of old friends from my former church ward but I decided, what the heck! You only live once and I need to get to know the women in my new church ward better. So I am off to bed and then in a few hours will get up to go see New Moon. I promise I will not post too many details for another week or so to give everyone a chance to go see it first.

For now, I better get some rest.

2009-11-16T21:47:00.000-08:00

Friends and family,

I hope that my friend Amanda Lawrence does not mind that I ask that you please keep the Price family in your prayers. They lost their young daughter with Cerebral Palsy over the weekend. The reason for death is still unknown and the family is suffering from the horrible shock. She was also like a daughter to my dear friend Amanda as she spent her time in the NICU with Amanda's son Duncan. It is a great loss to both families.

God bless you Price family. Prayers are being said all over the nation in your behalf.

2009-11-10T15:33:00.001-08:00

2009-11-10T15:13:00.000-08:00

Just a quick update.

We are still trying to manage colds here. Jonah came home yesterday from surgery. Everything went fine. His right eye is pretty red from the procedure but otherwise he seems to be doing ok. He does NOT like his right arm splint one bit and I can't blame him! His right arm gets things done for him so having it tied up so he can't use it is no fun. He was very upset about this last night. Today he is trying to work around it. He will have to wear this for at least a week so he won't get to his eye and damage the stitches, etc.

This morning Jonah woke up sounding absolutely miserable. He has horrible congestion and I have suctioned him like crazy a couple of times today. Poor guy! First, surgery and now a cold! I was worried because this afternoon he was flushed but he is not running a fever so I am just keeping an eye on him. He is eating awful today but with a stuffed nose I can only imagine that eating is not that pleasant.

Last night we held our very first Family Home Evening. I have had the best of intentions to start but with Noah's non-existent attention span I have not been too motivated. I made an adorable FHE board at the recent Funtastic Friday event for the Relief Society and decided this was my motivation to start holding regular FHE's.

We had a quick discussion about Jesus and how he is Heavenly Father's son. We sang a few Jesus songs from the Primary, colored a picture of Jesus (Jonah got to use his light box to help him see the picture) and Grandpa bought Marie Calendars pies for dessert (yummm......) Was it perfect? Was there crayon throwing and temper tantrums after the first few seconds? Yes, but I am determined to keep trying. It can only get better, right!

I was able to get a few photos (see above)!

2009-11-06T17:32:00.001-08:00

Just a quick posting.

We are sick here today. I have been in bed all day (thank goodness for Grandpa and his helping hands) and Noah has been ill too. Noah has thrown up a few times today, including all over our bed comforter and sheets (wonderful). Shane is at the doctor's office with Noah right now and thank goodness it looks to be viral. The pediatrician is going to prescribe meds to help stop the vomiting. Noah and I are trying to prevent our plague from spreading to Jonah who has surgery Monday.

On another note, Jonah is still not eating well. This is day 2 of the Periactin. We thought we were turning a corner yesterday when he acted hungry at lunch after finishing his 4 ounces of Kids Essentials. But today has been horrid as far as eating goes. We do not have him on the full dose as of yet. We may need to add that extra teaspoon in the morning. I am giving him one more day in the hopes that he will eat better tomorrow.

That is the latest. We will let you know about Jonah's surgery Monday. I hope I recover quickly because Shane may have to travel down to Madera without me on Sunday. The hospital has strict RSV guidelines right now and they only allow 2 healthy adults in with each child.

We will keep you posted.

2009-11-04T13:27:00.000-08:00

Good news! We have approval for the Periactin. I am ecstatic (to say the least)! I will pick it up today and Jonah gets his first dose tonight. PRAY that this will finally get this kiddo's appetite going....it has been a long two and a half months since his surgery.

Hoorah! We are off to feeding and speech therapies for the boys.

Oh, I have to say...poor Thanksgiving! I went today to Michaels to look for some fall garland.....oh no. Every thing in that store is Christmas! As well as Target, Walmart and Pier One. I find some left over garland at Pier one but dang it, I don't want to pay what they are asking. I am trying one more craft store down town and see if my luck changes.

2009-11-01T08:46:00.000-08:00

Just a quick update about last week's tests.

Jonah's delayed emptying scan did not show any problems. This is both good and bad. Good for the obvious reasons but we also do not have answers regarding his poor appetite. I spoke with the GI doctor Friday and she of course suggested that we go ahead with the nasal tube to augment what he is already eating. I told her NO, that we first needed to try the medicinal route and trial the Periactin to see if it would increase his appetite. Good thing I have been doing my research and have other micropreemie moms to share notes! I first heard of Periactin from my good friend Amanda Lawrence whose son is also a 24 weeker. They have Duncan on Periactin right now and she has said it has helped some with his appetite issues. I guess this clinic does not generally use the Periactin on younger children but thank goodness I was able to use Duncan as an example and she said she was open to possibly trying the medication but wanted to discuss it with some of the other clinic doctors first. She is supposed to get back to me Tuesday.

For those of you fasting in church today, remember Jonah. We do not want to put him through any more discomfort and adding a nasal tube, even if only for a month or two, would be absolutely horrible for his progress. His speech therapist this past Monday absolutely had a melt down over the idea. She said it would aggravate his texture issues and further delay any speech progress. She was NOT a fan of the idea and I am not either. So please fast and pray that the doctors will agree to trial Jonah on the Periactin and that it will be successful in increasing his appetite.

The big issue is maintaining weight as well as gaining weight. He really has not lost any weight in two months but we need him to start gaining too.

I am praying the Periactin will be our next option.

Friday was a very frustrating day for me. First, with Jonah's fighting over eating as well as the phone call from the GI clinic. They did talk about an endoscopy to see if the fundoplication might be too tight but they said really there is not much to do aside from waiting for his stomach to grow and accomodate food so I do not see the point in putting him through the endoscopy if we can't actually do anything about the results. Although I guess Shane is right that it will at least provide answers.

Saturday I cleaned house in the morning, Noah went shopping with Shane for our church trunk o' treat and Grandpa took Jonah on a nice, long walk. Saturday afternoon we ran around doing errands, grabbing a few last things and then off we went to the local park to set up for the trunk o' treat. It turned out really well. One of Shane's vendors donated 200 pumpkins and the bowery ended up looking pretty festive with pumpkins everywhere and we were able to send them home with the church families after the pot luck which was nice. We had trunk o' treating after. Jonah was not in a good mood so Grandpa took he and Noah home for baths and Shane and I stayed behind and decorated our trunk for the church children. It was a lot of fun! We all enjoyed dressing up and even talked Grandpa in to wearing a Dr. Seuss hat.

Halloween is officially over and Christmas is around the corner (well, it is already here if you hit the stores). Now I guess it is time to get going for Thanksgiving. I think this year I am starting a holiday binder. I am inspired by one of our church sisters in our stake who is the most amazing, organized person you will ever meet. She had a holiday organization lesson for us and talked about ways to organize for the holidays. I am going to start collecting menus, recipes, fun activities and organizing them according to holiday. That way we can start deciding on family traditions and have menus planned for upcoming dinners, etc. This will be a new project to add to the pile but it is one I am excited about.

Thanks everyone for your extra support and prayers. Our little family appreciates all the love constantly sent our way.

2009-10-31T20:24:00.001-07:00

Happy Halloween everyone!

We enjoyed a fun pot luck and trunk o' treat tonight with our church ward. Shane and I went all 60's/70's and the boys dressed up like pirates, even Grandpa wore a Dr. Seuss hat. For those of you wondering what I would ever look like as a blond this it but I'm happy to say I can't wait to return to being a brunette!

2009-10-31T20:16:00.000-07:00

2009-10-26T21:38:00.001-07:00

Photos from Blind Babies Harvest Festival. As I said below, Jonah was not in the best of moods so unfortunately we do not have as many photos of him as I would like. Noah LOVED the tractor (he is in love with all cars, trucks, etc.).

2009-10-26T21:32:00.000-07:00

2009-10-26T20:52:00.001-07:00

We are off to a very busy start here in the Hanna house this week.

Today alone we had therapy, school and I volunteered for Little Feet Repeats. It was a long day to say the least.

This past Friday we heard from the GI clinic. The doctor that has been following the boys was concerned about Jonah. We discussed what has been going on and she decided we should repeat his gastric emptying delay study to see if he is still suffering from a lot of swelling due to the surgery and scar tissue removal in August. The doctor did say some kids take a few months to really heal from the procedure. She said if the swelling was significant she might recommend a nasal tube to augment his feeding until he is able to eat more adequately. PLEASE pray that we do not go down this road. I told the doctor this HAS to be the last choice. I talked to her about Periactin and she said that if the results show things are healing then the assumption will be that he needs medication to boost his appetite and we can try the Periactin. Even if the study finds swelling I may still ask to try the Periactin before the nasal tube. The doctor wanted to know why with Jonah's former results the surgeon did NOT do the pyloroplasty. I told her the surgeon's philosphy is the procedure is more harmful then helpful and he personally does not recommend nor like to perform the surgery. Apparently Jonah's GI doctor was not happy with this. What can I say? They both have varying opinions and we put trust in the surgeon's decision to not perform the pyloroplasty.

Right now, friends and family, we need your prayers! Please pray that we find answers that do not require any sort of feeding tube. We have not fought for two years to get to the point of giving up. It has been exhausting, I cannot lie, we are to the point of syringe feeding Jonah his sippy cup or supplementing with solids only and it can be so frustrating for both of us but I am not ready to put Jonah through any more than is necessary. So pray for both Jonah and I that we can make it through this and get answers quickly.

This week will continue to be busy with Little Feet Repeats, Halloween carnival, school, therapy, and a trunk o' treat for church plus the study in Madera Thursday. Phew. That was a long sentence to right and a bit stressful to think about but there will be a lot of fun too.

I will post photos of the Blind Babies harvest festival we went to Saturday. After all our driving, Jonah was in an awful mood so most of the photos are of Noah. It was a bit on the hot side (in the 80's) and being outside when it is hot is not Jonah's cup of tea.

I will keep everyone posted and let you know when we find out more about Jonah.

2009-10-21T22:11:00.001-07:00

The day is finally ending at 10:00 pm. I am completely exhausted and after this posting I am going straight to bed because tomorrow it starts all over again and early.

Dr. Tamura, Jonah's fundoplication surgeon, wants us to start him back on arithromycin to see if it helps boost his appetite. He thinks that maybe Jonah is still suffering from GED (gastric emptying delay). Other then that, he said that unfortunately it will take time for Jonah's stomach to grow to a point where it can accomodate more volume so we just have to stick with getting as many calories in him as possible. I am considering adding Benecalorie or olive oil in his Kids Essentials to give him an extra 100 calories with each meal. He has not lost weight but he has not gained either in the past two months. Not good. He needs to be continuing to grow so hopefully we will find a formula that will work. Dr. Tamura also arranged for the GI clinic to call and arrange a time to see Jonah because of my concerns and he wants to see us back in a month.

Now, as far as the appointment with Dr. Kelly goes....Jonah will have surgery #11 or 12 (at this point it is past 10 and I am losing count) on November 9th. Dr. Kelly noticed today that his left eye is resting lower then his right and he seems to not really be using his left eye. She wants to correct this with the hopes that the change will force him to use both eyes together. When she asked me if I had noticed the difference in his eyes I said, yes. I have noticed before that his left eye focuses lower then his right but I figured that when Dr. Kelly felt the timing was right she would correct things and it looks like that time has arrived.

So we are scheduling the surgery for around the 9th. Shane would like it earlier because he starts teaching night classes for the University of Phoenix so we'll see what I can do tomorrow with scheduling. We want to do the surgery with Grandpa in town so that we can both go down with Jonah and Grandpa can stay behind with Noah.

That is the udpate as of today. I sure hope that this medication helps Jonah and hopefully adding extra calories to his sippy cup will help him start putting on weight too. He is still hanging out around 23 pounds 5 ounces.

Well, I am exhausted so for now I will end this post but will follow up with more later. This weekend we have the Harvest Festival with Blind Babies Foundation. It will be fun to get out and enjoy the time there plus we will see Kristi Spaite with BBF. She continues to be a great help to us.

2009-10-20T19:31:00.001-07:00

A preview of the boys Halloween costumes.

We had our play group today at the local pumpkin patch and let the kids wear their costumes because we are doing a party for just the adults Friday. I LOVE the top photo of Jonah and of course Noah is adorable too. My camera died before I got any good group photos so I included an individual shot of Preston (Tracy's son) and Allie and Noah (Allie is Brooke's daughter). For other photos I'll have to rely on my friend Tracy. She got lots of great photos with her professional Canon camera. The kids had fun!

2009-10-20T19:27:00.000-07:00

2009-10-20T19:16:00.001-07:00

We did not get results from last week's EEG. We have to wait to receive an official report in the mail. After research and conversations with a friend back east who has epilepsy I feel that we really will not learn much from the EEG. Unfortunately, it seems we are in a situation where we will just have to wait things out and see if a seizure happens again.

Other then crazy busy, things are good. The boys went back to school last Thursday and this Monday. They really enjoy their time there and I think it is good for them both. Noah needs to work on his vocabulary so his class is really challenging his speech skills, which is great! Jonah enjoys singing time and they work with him in a stander they have there at the school.

This week has been and will continue to be very busy.

I have been worried for some time about Jonah's poor eating. I do not have a scale at home for the boys (which might be a good thing as I would drive myself crazy with it) but it seems to me that Jonah might have lost a bit of weight. He has not been weighed in some time and I am to the point where two months post surgery, we should be seeing his appetite return to normal. Plus, his gagging is worse and his adversion to textures is also worse. I finally broke down Monday and called his surgeon. His nurse said that the gagging should not have continued to worsen and the fact that his appetite is still poor may mean that the nissen is too tight. We will meet with the surgeon tomorrow morning to see what his feelings are. They may need to dilate the tube down his esophagus if they do decide that things need changing. After this visit, we will visit his eye specialist. I continue to worry about Jonah's vision too. Some days I feel like he sees absolutely nothing and other days he seems to better interpret his environment. His prescription has not been changed in a year so tomorrow I plan to ask what the plan is with this. He is still awful about keeping his glasses on. I don't know if he will ever fully adjust to using them. This also leads me to believe that perhaps they may not be helping as much as we would like, I will have to ask Dr. Kelly. I know they do help some, for sure...but the question is how much.

So tomorrow is busy, I rush home to go to a youth activity for our church and then Thursday is therapy and school in the morning. I still have a Sunday lesson to plan for our young women's group and I have to get ready for the Little Feet Repeats consignment sale next week. My clothes are in the database, I just need to print tags and organize everything. We are selling quite a bit so that is always good. I am volunteering this time around to up the return I get on my sales. We also have a fun party Friday night with friends (just adults--hoorah!) to celebrate Halloween. I am excited.

The next two weeks are going to be busy, busy. But I wouldn't have it any other way. Grandpa and I can't believe how quickly this month has gone. It will be November soon, hard to believe!

Enjoy the photos above. We had our play group at a local pumpkin patch today. Jonah debuted his Kid Cart today. It seemed to go well. I have included a photo above of him riding in his new wheels.

2009-10-13T10:56:00.001-07:00

Just a quick posting. Tonight we head down to Madera. We were able to get a room in the Ronald McDonald house next to the children's hospital. Jonah has his EEG (Electroencephalography) tomorrow. This test will last for two hours and will measure Jonah's brain activity to see if we can find indications of a seizure. The worst part will definitely be the preparation. We have to keep him up until 10:00 pm and get him up at 5:00 am. He has to be very drowsy for the test as they want both waking and sleeping measurements. I am glad we were able to get a room with RMH as this is a difficult time of year with the RSV season.

I will post more information when I have it.

2009-10-10T23:39:00.000-07:00

We had a wonderful family day today.

We decided this year to take the boys to a local farm to enjoy some pumpkin picking and harvest fun. I have never been and really enjoyed our trip. Murray Family Farms is locally owned and they grow organic produce. The boys enjoyed face painting, a corn play pool (Jonah's favorite!), corn maze, games, hay ride and pumpkin picking. We bought tasty goodies including home made fudge, blackberry pie and dried fruit. The Haney family joined us and brought their darling one-year-old daughter, Haylee, to play with the boys. I really admire this family and appreciate their friendship. They are adopting Haylee and have been waiting for over a year for things to be finalized. I have watched Shirley take this baby straight from the hospital and nurture and love her like her own. She is a lucky little girl. So we enjoyed their company and had a wonderful trip. Definitely something to do again next year! They allow you to come and pick produce year round so we may have to go back in the spring and pick berries. I like that everything is organic.

Tomorrow is fast Sunday for our church. I am fasting that Jonah will start regaining his apetite. I worry so much because he has not been eating well ever since his fundoplication surgery. While we are grateful for the end in vomiting, I am worried about his lack of appetite. I never thought we'd go backward with eating but I find myself having to fight him on every meal and I have not come this far to have Jonah end up with a feeding tube. So for those of you willing to fast, will you keep Jonah in your prayers?

We are so grateful to have Grandpa here. It is always a lift to our spirits. He is such a positive support and really gives us so much love. We are lucky to have him here. We also miss Grandma who flew home on Friday.

It is late and I must get to bed, so I will end this post for now.

2009-10-10T23:26:00.000-07:00

2009-10-09T08:48:00.001-07:00

Well, it has been a roller coaster of a week.

Our trip to Las Vegas was fairly good. I did not sleep well, it has been a few years since we have been and I think I remembered why. =) There is so much "riff raff" that it makes it hard for me to enjoy the overall experience. I did not sleep well because I had a partial migraine due to all the smoke in the streets, casinos, etc. BUT the show (Phantom) was absolutely amazing. If any of you have a desire to see it, the Las Vegas production is one of a kind. I have seen it in both Los Angeles and a couple of times in Utah but the Las Vegas stage was incredible. I was told it was stunning because they had custom made the stage just for this production and it was. The special effects, music and acting were all phenomenal. I was able to also get some great winter clothes for the boys at their excellent outlet malls. In the end though, I was glad to come home to my own bed.

Tuesday on our way home I called Grandpa and he was worried about Jonah. He said that mid-afternoon he started acting like he was having a seizure and it took some time for him to come out of things. My Dad did say that it was not a full blown seizure (he is a retired special educator) but that it appeared to have characteristics of a seizure. When we got home he looked pale and exhausted. He pretty much slept for most the rest of the day and really was just not himself. I was absolutely terrified and very upset but the neurosurgeon's office had already closed for the day so we kept Jonah with us overnight and called first thing in the morning. When I spoke with the neurosurgeon he ordered a CT Scan but they were not able to get us in until yesterday. The good news is that the scan was stable and the neurosurgeon did not see any change to his ventricles. But, because of what I described to the neurosurgeon that Jonah had done he was still concerned that Jonah had experienced a small seizure so he wanted an EEG. They were not able to schedule us yesterday (unfortunately) so I have to wait and hear from Radiology next week to schedule that appointment. Jonah goes to see his eye specialist on the 21st so I am going to try and schedule his EEG before that appointment in the morning. We are grateful that things appear to be stable but a bit frustrated as to what really happened. Hopefully we will know with time.

More good news, Grandpa and Grandma Langston have been with us all week. Grandma goes home today and we are all packing in the car and driving her to Burbank. Grandpa is staying through Thanksgiving and we welcome the help! It is wonderful to have the support and the boys love having Grandpa around.

We are grateful that the boys celebrated their second birthday this week and we are grateful that the boys have grown in this past year. We hope the upcoming year will be full of blessings and health so that the boys may make progress with their individual goals. Thanks everyone for your well wishes and support.

2009-10-07T20:19:00.000-07:00

Happy Birthday Noah and Jonah!

It is hard to believe that today is your second birthday. We had a small group of friends and family over to the Westdale Park and the boys enjoyed demolishing their polar bear cakes. I think we had more fun watching them make a mess of everything! The boys were spoiled with gifts from both friends and family.

We LOVED the t-shirts from the Lawrence family in Georgia. Amanda is a dear friend of mine whose son was also born at 24 weeks. She found these t-shirts that say "I am Two...You Have Been Warned!" Ha ha ha! The boys wore them all day and had lots of compliments. Amanda also remembered me and got a t-shirt that says, "I am Raising a Child With Special Needs...What is Your Superpower?" LOVE IT! She also sent the best, colorful lion and monkey stuffed animals. Grandpa brought with him lots of fun cars and dinosaurs for the boys plus several religious cartoon DVD's that we had asked for so the boys have something religious and fun to watch on Sundays.

It was a good day and I am glad the boys enjoyed themselves tonight. Thanks to family and friends for coming!

2009-10-07T20:15:00.001-07:00

2009-10-03T19:50:00.003-07:00

Shane and I are so excited for Monday night! We found discount tickets for Phantom of the Opera at the Venetian Hotel in Las Vegas. Shane loves Broadway but has NEVER seen Phantom (which I cannot believe). So we are looking forward to our quick but fun trip together, starting tomorrow afternoon. During Shane's seminar Monday I plan to hit their fabulous outlets to look for some winter outfits for the boys for their upcoming birthday.

Thanks to everyone that voted for which cake to make. Obviously Panda Bear is the pick!!!

2009-10-03T19:50:00.001-07:00

2009-10-03T19:47:00.000-07:00

Welcome Grandpa and Grandma Langston! We are so happy to have you here!! Both arrived today from Burbank. We are excited to see them and they are thrilled to be with us and the boys.

2009-10-03T19:44:00.001-07:00

Uh-oh!

You can just see this word forming on Noah's lips when I caught him playing in the dishwasher. NOTHING escapes the inspection of our little future engineer (much to my dismay). Shane found out how much he loved the laundry basket on Thursday (turn your back for a second and you'll find out just what Noah can get in to).

2009-10-03T19:43:00.001-07:00

2009-10-03T19:41:00.000-07:00

I love these photos of Grandma playing with Jonah and his light box. We just got these transparency stories to read to Jonah on his light box so he can see the images. We bought them from Light Bright Books for his birthday. Grandma had fun reading them with Jonah tonight.

2009-10-03T19:40:00.000-07:00

2009-09-29T21:11:00.000-07:00

What will it be? Panda Bear or Brown Bear for the boys' birthday cakes? Don't forget to vote!

2009-09-29T21:10:00.000-07:00

2009-09-29T11:45:00.000-07:00

Just a quick posting. It seems that all of us here are suffering from some form of cold! Mine started in the middle of my much anticipated shopping adventure in the form of a migraine! Ugh! Thank goodness Tracy had Tylenol on hand but by the time we made it home I was in so much pain I had to keep my eyes closed because even the day light hurt. Needless to say I went straight to bed and slept four hours straight until the pain subsided some. I had to get up to complete the church bulletin for the next day and soon thereafter went straight back to bed. Sunday morning found me still feeling awful and the boys sounded miserable themselves, what started out as runny noses last week turned in to coughing and lots of congestion. Poor Dad! He had to take care of us all Sunday. I slept most of the day as did the kids and then first thing Monday morning we took the boys to the pediatrician. Unfortunately the doctor wanted to run every test in the book (due to their prior history) so we had to go through the miserable process of going to the lab. Poor Jonah, why is it always Jonah? He had THREE technicians poke him various times before the final one (the supervisor) was able to draw blood (argh!) Next time I plan on asking first thing for the supervisor, I don't care if I am labeled the hyper-demanding mother, I can't handle my child being poked like a lab rat! Thank goodness Noah's was not as bad but they still had to poke around a bit before they got blood. Both boys have so much scarring that drawing blood is always a nightmare. We had to put Noah back on oxygen during sleeping time so the doctor also wanted a chest x-ray. After all this, we finally found out this morning that both boys have your regular, run of the mill upper respiratory infection. So they are both on Omnicef. Hopefully they will both start feeling better soon. Noah has been extra clingy and only wants Mom so right now our days are pretty interesting! Thank goodness Dad was available yesterday to help take the boys and run to the doctors, etc.

One good thing to look forward to is: Las Vegas! Shane is going for a work convention next weekend and I get to tag along! It will be a nice getaway together. I think we are staying at the Bellagio so I am excited. My cousin's blog mentioned that she took her family to Serendipity 3 over Labor Day so I was MORE then thrilled to find out Serendipity had opened a restaurant at Caesar's Palace. Hurrah! I told Shane we had to at least have dinner there.

And, even better Grandpa and Grandma Langston are coming in to town this Saturday for the boys' birthdays!!! HURRAH! Can you believe the boys turn two a week from today? I cannot believe they are already turning two! Last night I was at Party City picking out cute party hats for the boys and decorations. We are throwing a small party for the boys (just cake and ice cream) and we rented a local park that is close to us. Hopefully I will be able to pull off these cakes I want to make. I found the cutest stand up bear mold and I am practicing today to see how they turn out. I will make cupcakes for the other children coming and the adults get regular ice cream and cake. It will be fun. We canceled Disneyland because we were not able to get the entire family together and we figured it would be best to save until the boys are a bit older. I am, however, thinking of taking Shane for his 35th birthday (just he and I) in December. Grandma Hanna is already in on the surprise for the hubby. She will be down to watch the boys and I am thinking of doing a day at Disneyland and stay in Anaheim. It shouldn't be too bad a deal as they are running their get in free option on your birthday.

So we have a busy, busy week coming up. I hope the boys get better and quickly. We are out of our schedule and I hate being out of schedule! It makes for such long, long days when we aren't running to all our various classes and appointments. Believe it or not, I love keeping busy and I love getting out with the boys. It is good for both of us. So I hate being under house arrest, the cabin fever sets in quickly. Pray that we'll all start feeling better and quickly.

Well, Jonah is down for a nap and Noah won't take his nap without me so I guess I better go get him down (not to mention he is making a mess in the kitchen). Better run!

2009-09-25T14:27:00.000-07:00

What a busy week it has been. Now that we have Richardson Center classes plus therapy and play dates our weeks pass quickly. I am so happy it is Friday! Noah has been super cranky today (talk about temper tantrums plus!) and I am glad to see Dad come home in the next few hours. The boys have had runny noses all week and I sound a bit congested today so I wonder if we are coming down with colds all around. Oh the fun!

Tomorrow I am going shopping with Brooke Hanson for her birthday to the Tulare Outlets. Happy Birthday Brooke! Tracy and baby Preston are coming too. I am looking forward to the time out with girls. Our sweet friend Amy Call is coming to watch the boys. I have to publicly brag about what an amazing friend she is. She loves these boys so much and is good with both of them.

Speaking of good friends, as we start this journey with Jonah and his Cerebral Palsy diagnosis I am acutely aware of the many people (unfortunately) who are uncomfortable with or do not recognize Jonah as a person because of his imperfect body. The truth is, my boy is intelligent. Sadly, I was just told of someone who asked my family member the question if Jonah was "smart" and could he actually learn. My first response was to think of the obvious lack of sensitivity on behalf of the individual who asked these questions but I do realize that many people are not exposed to children with special needs. Thank goodness this family member was able to say that indeed, Jonah does learn, he has special needs with his blindness and Cerebral Palsy but he can learn. So today, I want to say that I am proud of Jonah. Every day he smiles, from the moment he wakes up with his happy chatter to the moment we read him a scripture story, say his prayers and tuck him in to bed. He smiles throughout the day, he waits patiently through his brother's temper tantrums and he snuggles with everyone. He is probably the best example of compassion and Christ-like love that I have in my life. So despite his obvious physical disabilities, my child has much to offer this world. I know that my mission will be to gracefully (this is what I hope for) help those around him understand this.

Yes, some days I ask painful questions. Why? Why did both Noah and Jonah suffer so much the first two years of life and why does Jonah continue to have severe struggles? The answer came clearly to me recently that soon after the boys were born, we left their outcome in the hands of God. Both Shane and I specifically prayed to our Heavenly Father and left the lives of our boys in his hands. So the answer that came to me was this was not my choice. Therefore, I move onward with two very loving children who have much to yet teach this often apathetic world that hope lives and that self worth is not defined by physical perfection or materialism. I am proud of both my sons and all that they have overcome, most of which many of us could not do. They are miracles and God is with them every day.

I also want to thank each of you that take the time to be a part of the lives of Noah and Jonah. Thank you for celebrating both boys, even though their needs are so varied. Thank you to those of you who take the time to talk to Jonah, to lovingly touch his hands and let him know that you care for him. Sometimes these moments are all that I have to remember during those difficult days when his challenges seem so insurmountable or an insensitive comment/stare from a stranger hurts my heart. God bless each of you for your prayers and support. We are here as a family today because of your faith. Please continue all you do in loving Noah and Jonah. Show the world what it means to love unconditionally, without limitation.

2009-09-18T22:25:00.000-07:00

Farm Day!

It was a lot of fun. The boys and our friends Brooke and her daughter Allie enjoyed a goat, sheep, pigs, bunnies, games, face painting and treats. The boys teachers played with them and took them around to introduce to others. Noah had no fear of any of the animals and kept trying to stick his whole hand in to the bunny cage (thank goodness Mommy was on top of things before his little fingers were nibbled on).

All in all, it was a fun morning. We had fun with Brooke and Allie too!

Classes went well yesterday at the Richardson Center and today we went on a brief walk at the park and then an early lunch with Tracy and her son Preston. I stopped by Michaels to pick up items to make the boys invitations for their cake and ice cream party celebrating their 2nd birthday. I can hardly believe it is almost here!

Tonight we watched Allie while Brooke and Blaine moved in to their beautiful new home. Amy and Tyler brought over their puppy Princeton for a visit and Noah had a blast following him around and screaming at his puppy kisses.

Tomorrow morning Shane gets up early to help the Hansons finish moving and then we'll do the regular Saturday chores before going out on our couple date tomorrow night.

We have only two weeks until Grandpa Langston and Grandma Langston come down for a visit to celebrate the boys' birthday. We are excited to see them again! We also plan to take the boys to Disneyland and I know they both will find things to enjoy.

I better end this posting as I need to try and get some sleep before another day starts.

2009-09-18T22:20:00.001-07:00

2009-09-15T15:04:00.000-07:00

Beach photos!

We had fun on Saturday at Santa Monica. It was actually a bit over cast so the temperature was on the cooler side. Noah wanted to make friends with everyone on the beach. I didn't have my camera but at one point he and this other little girl found each other and were so thrilled to have a new friend. It was so cute. Jonah loved playing in the sand with Dad but was not such a fan of the waves. Noah is in LOVE with sand (you can see in the photos), at one point he was making sand angels and practically burying himself in sand (lots of fun clean up for mom). I wish I would have had my camera! Noah also enjoyed inspecting our faces and when Dad dared to fall asleep Noah made sure his nose and mouth where working like they should be (see the photo below). All in all, everyone enjoyed the beach. We stopped by Claim Jumpers on the way home and beside Noah throwing a fit most of our dinner (got to love the terrible two's) we enjoyed ourselves.

Richardson Center classes are going wonderfully. The boys both love their classes. They have very dynamic teachers and I love having the extra time with them in a school setting. There are OT's and PT's from Terrio in Jonah's class so he gets extra time with them and they have a neat, newer stander that he gets to use while in class. There are varying levels of disabilities in the class, including Downs, Autism, CP and a child that was born with hydrocephalus and also had a shunt placed to help. Noah's class is going to challenge him and give him discipline (which he needs not just at home but in a classroom setting). His class consists mostly of verbal activies to help build vocabulary and speech. He has added his verson of "don't" which includes saying the word with much emphasis and forgetting the "t." This has turned up in his temper tantrums and he always screams it at me when he does not get his way. He also says "uh-oh" non stop. We are working on more and all done. I hope please takes the place of bubbles which is what he calls something he wants. He says "ank u" for thank you (so we are getting there) and understands up and down. Yeah!! The best part of Noah's latest progress is his eating! He now will eat chunks of cheese, hot dog pieces and pieces of fresh peach and banana! I hardly can believe I am even writing his name and these things in the same paragraph! He also tried macaroni and cheese but was not terribly fond of it. Hopefully we can build his food repertoire in the next few weeks. Jonah has also done some great things. One of the Terrio PT's who has not seen Jonah in a few weeks saw him in his Richardson Center class and noted that his trunk strength is getting better and she was excited. Jonah continues to work on his sitting and even weight bearing with his legs. He is GREAT at verbal mimicking games which is awesome for a child that can't even see your lips and relies completely on his hearing. Yesterday we were saying "sssss" back and forth to each other and several vowels and consonants. His main words are still mom and dad but hopefully with more practice and time those vowels and consonants will come together. We met with a speech pathologist Monday in a parent group setting and she talked to us about early speech development. She did say that babbling is half way there and that if our child was babbling regularly to know we were on our way to progress. So I take pride in this.

Tomorrow we are going to a farm day at the Richardson Center. They are going to have farm animals, games and treats for the children. Brooke and Allie will join us for all kinds of fun. I am going to see if I can find them some cute western wear tonight that they can wear tomorrow.

I will take pictures and post them!

2009-09-15T14:55:00.000-07:00

2009-09-09T21:12:00.000-07:00

Oh! One more thing. First day of class tomorrow at the Richardson Center! Jonah will start his "Moves" class which is a national program actually designed and developed in Kern County for disabled individuals. Jonah's teacher, Carmen, called me today and introduced herself, she was very sweet on the phone. Noah will not start his classes yet because we are still trying to manage his oxygen situation. Although he is off, the school needs to keep a small tank on hand just in case and arranging this has turned in to a full blown circus with our insurance. I still can take Noah over and sit with him in Abigail's class but he cannot be left with her until the school nurse has everything in place and a health report put together detailing what should be done should Noah need oxygen. We will probably start with both boys next week.

2009-09-09T20:53:00.000-07:00

Guess who LOVES his new switch toy! Jonah. We just made a trip to Madera today for Jonah's surgery follow up (all his well, thank goodness) and we stopped by the Blind Babies office to get a few toys for Jonah. Our contact, Kristi, included a switch toy and switches for us to start using with Jonah and they are a hit! Jonah giggled at this monkey for several minutes. Noah on the other hand was not so sure about the rather real looking creature and was a bit scared to get too close. Guess Mr. Monkey will have to grow on him. The idea behind the switch technology is to help Jonah learn that he can control his environment through the use of various switches. As he grows older and more mature these switches can be used for pretty much everything from operating the microwave to the television, computer, etc. Pretty handy! Kristi also included a couple of new toys for the light box, a bright orange pumpkin puzzle made of big foam pieces and an adorable story in braille about the littlest pumpkin with black background and bright orange pumpkin pictures. Kristi also included a toy bar that we will be able to use in creating a larger "little room" where we can hang toys of all bright colors and textures to create an environment where Jonah can explore. He is getting heavier and bigger so we will soon retire the much used little room that we currently have. We will be able to put Jonah in his stander underneath this new structure and it should also fit over his stroller so we can just wheel him in for play time.

We are so appreciative of everything and send a big hug and thank you to Kristi for staying in touch with us, even when we are out of her service county! She has been a wealth of information and resources for our family.

We did not make it this past Labor Day weekend to the beach because Shane had too many work phone calls. A rather important piece of machinery stopped working so he had to stay in town to manage the repair and get production back up and running. He did take the boys and I out to lunch Monday and then we went on a walk around the mall. It was relaxing and nice. I got our master bedroom cleaned Monday morning, did a work out on my treadmill and then showered before we took off for lunch so we got a lot accomplished. Plus, Shane promised me a trip on Saturday to the beach since we could not make it this past weekend. So I am looking forward to the break!

The boys have been doing well. Noah's vocabulary continues to grow and so does his curiosity. He has learned yucky, uh-oh when he drops something and is working on big boy. He continues to explore with finger foods and tomorrow we are going to try a toddler serving of real macaroni and cheese! Wish us luck! Jonah did great today in PT and was using his left hand well to support himself in the sitting position. Karen (his PT) was very excited to see this. He is all giggles and smiles and is probably the happiest boy that I know. I still cannot keep his glasses on him (dang it) but we are persistent in getting him to wear them (we are almost as quick as he is in pulling them off!)

Enjoy the video, we enjoyed catching him in the moment!

2009-09-09T20:31:00.004-07:00

2009-09-09T20:31:00.003-07:00

A big thank you to Grandma Hanna!! She helped us out for three weeks and just left this past Saturday. Thank you for all your love and support! See you soon for Christmas!

2009-09-09T20:30:00.000-07:00

2009-09-09T20:28:00.000-07:00

2009-09-03T11:13:00.000-07:00

I finally uploaded photos from my trip to Washington, D.C. I included photos of the Washington Monument, Capitol, view of Alexandria from the Masonic Temple, the Masonic temple built by George Washington (includes the stain glass window and me standing in front of the Knights of Templar flag), my missionary companion Lillion Clawson-Hoyt and I at Serendipity in New York City, me holding my fabulous knock-off Dolce & Gabanna bag while eating at Serendipity, my dearest friend and cousin, Bonnie and I at Serendipity, Amy (Valerie's friend), Valerie (my sister), me and Bonnie eating at the wonderful Serendipity (best frozen hot chocolate EVER), Bonnie and I in front of Mt. Vernon in Alexandria, the King Street Trolley which runs near Gadsby's Tavern, Bonnie, Amy and I in front of Gadsby's Tavern (famous restaurant where George Washington used to eat during his presidency), the town hall of Alexandra and Bonnie and I in front of the Statue of Liberty.

It was a wonderful trip and I look forward to maybe visiting again next summer to see Valerie and the D.C. area.

Back at home, things are moving along this week. We have been very busy. Monday we took Noah to the Pulmonologist. The specialist was so excited to see Noah off oxygen and after listening to him thought we should try to start weaning him at night too. We also plan to eventually take him off his last diuretic (Diuril) which would put Noah down to a whopping three medications when he used to be taking a minimum of eight (not including his Nebulizer medications). We are making progress!! We have tried Noah off oxygen at night and he does ok for about half the night but then sats in the low 90's so we've put him on 1/8 Liter and that seems to be enough to get him back up where he should be. In a matter of no time we will be off oxygen all together. I can hardly believe I am even typing those words.

Jonah is continuing to meet his goals and little by little getting stronger. I really think these classes twice a week will really help him progress too as they will focus on gross motor development and have every kind of adaptive equipment in the classroom. We start the classes next week. Hurrah! It will also be good for Noah to socialize and start learning some concepts that will prepare him for preschool and eventually kindergarten.

Grandma Hanna has been a huge help the past couple of weeks. We are so glad to have her here. She has been able to witness some huge milestones with Noah. He officially started walking, trying different foods (we have added grapes and diced peaches to his repertoire this week...he still is not big in to cheese or meat of any kind but we are going to try hot dogs with cheese in the middle and see if he will try them).

It is hard for me to believe it is September! Soon it will be October and Grandpa Langston will be back for a visit. We look forward to seeing him soon.

I hope to convince Shane to go to the beach this weekend for Labor Day but I do believe it will depend on whether or not he is able to actually get away from the office Monday.

Stay tuned for more adventures.

2009-09-03T11:00:00.000-07:00

2009-08-27T16:09:00.000-07:00

We are home! Jonah was finally discharged yesterday afternoon about 1:30. Grandma Hanna drove down with Noah and we all drove home together. We stopped by the Tulare Outlets on the way home and got some fall shoes and a couple pairs of jeans that were on sale for the boys. I have my upcoming consignment sale in October so I did not want to go too crazy yet. The Baby Gap was having a good sale on jeans though and Grandma Hanna bought the boys cute fall shoes at Stride Rite. We then drove home, bathed the boys and put them to bed.

Jonah is doing very well. I am proud of him. He has not thrown up once since his surgery (and he has definitely tried). We finally may be turning a corner when it comes to vomit in the house. Hurrah! Noah has practically stopped since walking (yes, he is all over the place now and more adorable then ever!) so we may finally be passing this awful phase of reflux.

Speaking of Noah, since I have been gone he has just blossomed. He is walking everywhere and is proud as can be at his accomplishment! He has new words including cookie, toe, please and hello. He has starting experimenting with different finger foods which is SO great!! I was so excited to come home and see all he has done and it confirmed to me how quickly they grow and change!!

So we are home today. I took Jonah's glasses in and ordered new covers to go over the sides and we got Jonah fit for the Kid Cart stroller today. It is really nice and will fit Jonah well. It will be helpful to have for church because it will come with a nice tray that he can use in nursery to play with all his toys. Hopefully we will have it in the next couple of weeks.

I am excited for our new fall schedule to start. We will be very busy with all we'll have to do which will make the time go by quickly.

Come October Grandpa Langston will be back down for the boys birthday and he plans to stay through Thanksgiving and then go home so we will be grateful for the company. We are still planning on Disneyland for the boys' second birthday this year. I think they will enjoy themselves.

Thanks everyone for your prayers during Jonah's hospitalization. It will be nice to be home.

2009-08-25T16:23:00.000-07:00

Well, I wish I was typing this from home but we are still here in Madera! Jonah is not eating as well as I would hope. He has taken some pureed food today but not much Pediasure (maybe an ounce). He is still on his IV fluids and his surgeon said we would watch him for the next "day or two.." Bah!! I am ready to go home! One thing the surgical resident did say this morning was that there was less stomach area due to the procedure so it might take time for Jonah's stomach to adjust back to where he was at with eating and that he might eat smaller amounts more frequently. Great. I hope this won't last long, especially because we can't have him losing any weight! I did freak out a bit after that discussion but Shane assured me that with time his stomach will grow and things will go back to normal, still how long will that be? He really has not shown me that he is hungry yet either...hopefully I will see that change.

I am definitely done with this hospital experience though so I am praying that Jonah will pick up with his eating and we will go home soon.

Keep Jonah in your prayers that we'll be home soon.

2009-08-24T15:50:00.000-07:00

Jonah is on board for going home!

He is on a normal diet today and loved his Trix yogurt that the cafeteria brought up for him. They just reduced his fluids so I'm hoping his appetite will pick up and he had his first messy diaper in days (not so fun for mom but they have been waiting for poop here at the hospital). We are definitely bored of the hospital and ready to go home!

His doctor said that tomorrow or Wednesday he could go home so that is great. So far things seem to be working. Jonah has definitely had some gagging moments where he has tried to throw up but he has not been able to bring anything up, so fingers crossed that everything will continue to work the way it should. I am interested to see if this will help his reflux, it supposedly helps some patients with the actual refluxing and others still have to take meds for the symptoms (although they aren't able to actually bring up food they still have the symptoms of reflux).

I am looking forward to having structure back. Sadly, we canceled the boys' appointments this week for therapy but everything will start back up next week. Friday the boys' infant specialist from the Richardson Center will be meeting with us. We are signing papers to get the boys going with classes. Jonah will be in the "Moves" program and Noah will be in a group of children that are more advanced. It will be good for both boys to learn new skills and socialize. Noah is such a busy body that I think he'll love the interaction. So we'll have these classes twice a week for two hours. We are trying to sign up for the Monday/Thursday 8:30-10:30 classes. I think I have already posted on these classes so I will not spend much more time. It will be great to have full mornings so that just leaves afternoons to manage. It certainly makes time go quicker!

I can't believe that in a little less then a month these boys will be two. One more year and they will start pre-school. Goodness, the time does go quickly.

Well, we will keep you posted as to when Jonah returns home. Hope everyone is doing well.

2009-08-22T14:47:00.000-07:00

Jonah's surgery lasted four hours on Thursday. It was a very, very long day by the time he was ready to be taken to his room for recovery. The surgeon said that the surgery went as well as could be expected. He commented that there was, of course, a lot of scar tissue but they were able to remove quiet a bit and clear room to perform the procedure by laparoscope. This was great news because Jonah's recovery should go better and hopefully the pain will not be as much as if they had to make an incision.

Jonah did well his first night but yesterday afternoon he started getting really fussy and sensitive to any noise. He definitely does NOT like the hospital nor the many unknown sounds that come with being in one. He cried a lot and was not liking anything aside from being held. I finally got him to go down last night around 10:00. It was a long day. I was very glad to see Shane arrive about this time. Yesterday was not too bad. I didn't mind having some snuggle time with my son and being able to read to him, etc. Today I am starting to feel that cabin fever syndrome hit. We did lunch outside and got Shane's hair cut quickly while Jonah was sleeping. He was still sleeping when we returned and it was nice to be outside and feel the sunshine and open air. I, myself, am not a big fan of being cooped up in a hospital for long periods of time. The last time we were in the hospital was for Noah's week long stay with Rotovirus and that was just plain awful. I went a whole week with hardly any sleep. This time around I got a room at the Ronald McDonald house which was a good decision because at least now I can put Jonah to bed and know that I will also get good rest without having to be interrupted by nurses every couple of hours.

We just started Jonah with small amounts of jello to see how he tolerates eating. If all goes well we could be going home Monday/Tuesday which would be fabulous. I really have not seen Noah for over a week, I did have a couple of minutes for hugs Thursday morning before we left for the hospital.

Thanks everyone for your well wishes and prayers. The surgery went well and now our little man won't (hopefully) be dealing with as much yucky reflux/throwing up. We are praying this surgery was not for nothing.

I will keep you posted.