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.