Wednesday, December 21, 2011

"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.

Thursday, March 10, 2011

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.

Monday, November 29, 2010

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.

Sunday, August 8, 2010

"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 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.

Thursday, June 17, 2010

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!


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.

Sunday, June 6, 2010

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 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 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.

Monday, May 10, 2010

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!

Tuesday, April 27, 2010

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.

Thursday, April 8, 2010

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.

Wednesday, April 7, 2010

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.

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.

Saturday, April 3, 2010

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/ 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.

Monday, March 15, 2010

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.

Thursday, February 18, 2010

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!

Monday, February 15, 2010

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: 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!

Friday, February 12, 2010

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 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!

Thursday, February 11, 2010

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.

Sunday, January 31, 2010

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 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.