Friday, April 27, 2012

Seeing Changes.....Waiting

The past month has been tough for our little man. While at his half day special ed program, Garrett is learning more like his alphabet, sounds, his address, phone number and such, he is declining in just his total emotional togetherness. And it is getting concerning. Yesterday we saw his developmental pediatrician and mentioned Garrett's increased anxiety, screaming, ticks, etc. The doctor thinks he is just undergoing growth in the academic things but then struggling more emotionally as his brain energy is being depleted with the learning. He thinks we can adjust one med from twice daily to the total dose in the morning to help with his anxiety. So no overall increase but a change in dose time. We hope it will give better coverage throughout the school hours. For the entire year of school until the past month, Garrett did his very best there!!! His teachers were so surprised when I came for a school morning for a party and we stayed past his usual dismissal time and he started screaming about something. They had NEVER seen him lose it....SERIOUSLY????? Yep! Seems they get his best, and don't get me wrong, I am THRILLED he does well there! I can send him with no guilt, knowing they love him and that he enjoys it there completely. He has had his quirks at school, sure. He has just started being able to walk through the gym for a shortcut to class after lunch. PE freaks him out with the noise in the gym, and sometimes the lunchroom is too loud for him. He loves music class!!! But starting 3 to 4 weeks ago, his school notebook with his daily info sheet has said his anxiety is increasing, he is having ticks and stimming lots, and he sometimes just checks out on them and ignores things. Not the usual for the past year. I was getting worried, and we moved the developmental pediatrics appointment early by a month to yesterday, but still no real fix.

We have re-instituted naps to the best of our ability. He will easily sleep 2 hours, and I think his little body is being challenged with energy now. Mito is a disease of energy crises, and knowing this, we can try to increase his rest, thus hoping for an increase in brain energy to help him hold himself together better.

Today he came home from school with his daily info sheet note saying that the class had a session about the earthworm, and had a real worm in class. Apparently it totally freaked Garrett out, and he certainly didn't touch it, but it also wore him out, I think. I put him in my bed and stayed in bed to get him to sleep. He slept from 1:00 until 6:45, and I have no doubt he will sleep all night also. He is just beat. Funny thing is that like Mito has been in him for years, it isn't visible in him walking worse or dragging physically, but it is all in the brain and how he deals with things.

So tonight I find myself at the edge of the waterfall paddling upstream furiously in my mind on one hand while on the other hand knowing in my heart that this change could very well be a sort of regression or beginning of a downturn in his health. I described it to Garrett's developmental therapist like this:
We know that at some point Garrett will go downhill. It is like driving on a cloudy day and learning that there is a storm with heavy rain ahead. You keep driving because you have to, and as the rain begins, you continue, wondering if what you are in is the bad stuff or if it is yet to come. I am lame on analogies tonight, but that sort-of says it. It is coming. We do not yet have a way to stop it, and every little thing makes the worry stir. And make no mistakes, he looks good physically, and he is getting taller....and cuter....but this emotional/mental stuff is HORROR. I feel like I am parenting a person after surgery who is on morphine! He makes so little sense sometimes with the things he asks for and then changes his mind and then reverts back to the original thing he wanted. It is baffling and exhausting from a mental standpoint for everyone in the house.

And then there are our girls. Addie and Ainslee have each fallen into crying times in the past month, coming to me with,"Mom, why does it have to be so unfair? Why can't he just play and not change his mind and not scream at us for saying a word he thinks isn't the right one or singing a tune that HE doesn't dictate?" Wow. I try to explain, but they have heard it a hundred times. It still doesn't take away the feeling of complete loss of control or normal in our home. It is hard. And I pray God keeps his word that He gave me when He once told me the girls would be better for this experience with Garrett. I can only have faith in His promise!!!

And in the end, we will still lose this little guy young in life, and we will have to pray we balanced it out well and can focus on the good and not the bad. I pray we run the race the best we can for Garrett's sake and our own so we can reflect on his time here and know we did all we could and loved all we could.

Thanks for listening!!!

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