This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Thursday, September 8, 2011

The End of Summer and Back to School!

Finally!! Finally, I have a free moment to sit and write about the last two months of our lives. We've had a pretty good summer and thank goodness, it has been mostly uneventful.
Hollie filled her summer days(and nights)with a summer drama camp. She participated in Kids Backporch Productions rendition of The Music Man. She had a really good time and it was a good experience for her.
She learned a lot and is super excited about choir and drama in her upcoming high school years.
Aidan learned a lot this summer too. He learned that daycare isnt quite as exciting as he thought it was. He had a good time at his little summer daycare but he realized pretty quickly that he's much rather be at home. ;) He got to go on a lot of field trips and enjoy several new activities. He has almost mastered the task of swimming without floaties! I thought that was a pretty big accomplishment for a 5 yr old but he added the icing on the cake. He also learned to ride his bike without training wheels. Boy, can he ride like the wind!
Both of them started school this week(this was an accurate statement when i started this post TWO weeks ago)and they made it through the first week of high school and Kindergarten. Can you believe it? It just doesnt seem right that they are both so big! Aidan had a really good week. He seems to have a really nice teacher who already appreciates his personality. Thank you Jesus! Hollie has had a little bit more of an issue adjusting to high school and not having the same group of friends in her classes but she's made it just fine. I remember my freshman year being one of the hardest years of school. We talked about how changes are a part of our lives from our very first breath we take up until our very last. She told me "Dont worry Mama, I"ll be fine!" Thats my Hollie girl. Straight forward and to the point.

Now for our sweet Lydon. He's handled this summer amazingly well. He has had some trouble with fevers that we've become pretty accustomed to and he has still had trouble with vomiting when he gets over heated or exerts himself too much. We discussed this with our GI doc and agreed that since we cant control the extreme temperatures we are experiencing or keep him from playing or make him grow new mitochondria, we should put him on another stomach emptying medication. We started that the end of July and the vomiting has seemed a little better over the last two weeks. We are so happy because most of the stomach emptying meds on the market are only proven to work about 50% of the time. He has adjusted amamzingly well to our nurses. And we absolutely love both of them! They have enriched our lives so much. Without them, it would not be possible for me to work outside of the home at all. Lydon has done so great with them and his therapists. I'm gonna ask permission and post of pic of him with each of them soon. They have truly become like part of our family. His communication with signing has been so rewarding absolutely adorable to watch and the words are coming. He has several new words and a couple of two word phrases. My favorite of which is "My Mama!!!" And he loves to "argue" with his brother and sister with this phrase. ;)He is doing so well in fact that we want to take advantage of him being well and try to make up for some of the past times. So, we are increasing his weekly visits with the speech and occupational therapists to three times a week with each one. At this rate, he'll be ready to audition for a monologe in the years Christmas play.
This past week I had a telephone conference with Lydons neurologist. He is a vital part of our team because so many things that Lydon deals with ultimately stem from neurologic issues. When Ly was so sick and hospitalized in June, we checked several different lab levels. One of them was his CoQ10 level. CoQ10 is a chemical or vitamin like enzyme that is vitally important in the energy making process. It is also directly linked to cardiac health because of the high energy requirements of cardiac cells. Because of this, it is very common to give this supplement to mitochondrial patients. However, it is not very common to see a CoQ10 deficiency but Ly's CoQ10 level was quite low. So, this deficiency is indicative of what is going on in Lydons body. Coincidentally, his Complex IV of the energy making process is functioning lower than the rest and it relies solely on CoQ10 for it's energy to complete its process. Additionally, his CPK level was high. CPK is an indicator of myopathy. Because muscles cells are so energy intensive, they are full of mitochondria. So if they are deficient or dysfunctional, you would expect that there would be some myopathy. We deal with that. We treat his poor GI function and dysmotility. We accomadate for his muscular weakness with therapy and work on increasing his strength and endurance. But on the other hand, we do not want those myopathy levels to increase too much too quickly because eventually that will end up effecting more than his tummy or his weak core muscles and start effecting his heart. Cardiac myopathy is something we do NOT want to have to deal with and I pray that we never do. So, we are starting him on very high doses of COQ10 or Ubiquinol in hopes of correcting his CoQ10 deficiency and preventing in further increase or progression of his myopathy. We will recheck his lab levels in a couple of months.
The next thing we discussed was Lydons liver. Dr. F explained that one of his liver enzymes was elevated along with his ammonia levels and his PT/PTT (bleeding time) levels. One of these things individually may not be a concern but with all of them coupled together it is indicative that his liver is not functioning as well as it could be. So for now, the plan is to play the waiting game. We will recheck these lab levels as well in a couple of months after he has been on the ubiquinol and another mineral/enzyme supplement. Of course, I didnt like discussing any of this but at least we know that it is something that we need to stay on top of. We finished the conversation by discussing how much improvement we've seen in Lydons speech and energy level since starting some of the medicine and supplements. We believe that we can improve Lydons current lab levels and continue to work on his physical endurance and developement.
We have an appointment with Immunology and Opthamology in another week. Hopefully we will hear back soon from the new mito testing we sent off for back in July I really wanted to post pictures but I havent posted anything for two weeks. Maybe I'll get the pics posted next time....

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