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/fluid...it almost seemed abnormal. The scary thing was he was not peeing and the nurses were worried we would need to start IV's to ensure he was not dehydrated but after 30 ounces of fluid by mouth we decided to wait the night out. The next morning Jonah's neurologist said that this was also part of the episode, the excessive thirst, not to mention his fevers had continued over night and the influence of the sweating from the episode on Thursday would both have added to that need to drink so much. By the time we were discharged and sent home, Jonah had good diapers and seemed to be mostly back on track.

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

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

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

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

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

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

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

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

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