Celebrating Inchstones: Update Bulletpoints

Monday, May 14, 2012

Update Bulletpoints

I should've updated a few times over but we've been so busy and then I'm crashing after I put Asa to bed!

-Friday, May 11, 20112, 8:30am. I had a meeting with the director of special education. I was asking for a one-on-one aide for Asa next school year. I'm concerned that he will have many more panic attacks, over heating episodes and general sickness without someone watching for warning signs that he needs to rest. The schoolth is old and hot, he works himself to exhaustion and he'll be going full days making him more tired and easily overstimulated and episode prone. He also needs a lot of physical help just getting around the room and school. On one hand I don't want someone hovering because Asa will take advantage of that but on the other hand being 1 of 10 kids with a teacher and aide, he's bound to require a lot of time and attention. So I made my presentation for him an aide. I felt like I was listened to and that she was concerned. The end result was that there will be an extra aide at the school next year anyway. This aide will be introduced to Asa and spend time with him to get comfortable with him and him with her. She will not be Asa's aide but an extra pair of hands at the school. I think this will be a great compromise and if it doesn't work out the director will know who I am the next time I visit!

I think the aide will work out because Asa does tend to take the easy way out and use people. If he had a person sitting beside him all day he'd probably never move, just squeal and point! I'm not too concerned that she won't be in his room full time either. Asa has a way of getting people to do what he wants them to do. In his class now there is almost always a floating aide or a volunteer who is at his side. He just has a way of getting people to help him out. I predict he'll do the same next year. We will be revisiting the situation after he starts school and we see his class assignment and test the waters. As a wise woman once said, this is my rest between contractions! I'll adjust my fight as labor begins in August!

-Friday, May 11, 2012, 10am-3pm-I got to help out at Gracie and Cade's Spring Bash at school. They had water slides, bouncy houses, inflatable slides, big tricycles, lots of fun. I just watched the first part of the day but I helped in the concessions the second half. I really loved being there! Before Asa was born I did all the field trips and fun school days. I really thought I'd be a permanent fixture once Gracie started kindergarten but we had Asa instead! As one teacher said, God had other plans for me! Yes He did but I miss the school stuff!

-Saturday, May 12 2012, 11am- We have some foxes that have a den in the woods beside our house. We've enjoyed watching them play and roam. Saturday morning I found one of the baby foxes dead near the road. At least I thought it was dead! We brought it back to the shed but it was very hurt. Late Sunday it roused up and we took it to the tree line where we saw them play mostly. The Moma came after him and helped him back to the woods. This afternoon the buzzards started flying around so barry went to check and he was dead. At least he died near his Moma and not beside the road!

-Sunday, May 13 2012-Mother's Day! They didint know it but I celebrated Mother's Day last weekend! Last Saturday anna kept Asa so we could go to Gracie's early, but hot, ball game. After the game barry kept Asa so that Anna and I could go for a girls day....Gracie didn't want to join us. We had fun window shopping. Well, Anna had fun and I like to see her have fun so it was all good! I'd rather bond over a nice long nap but that's not up her alley! Then last Sunday after church I went to a shower and got home just in time to go see Courageous playing at church! It was a weekend of barely even changing a diaper, making a cup, doing meds or other Asa chores. I was around him long enough for hugs, kisses, bedtime snuggles, fun stuff and that's about it! That is a great Mother's Day to me! Keep the flowers, jewelry, candy and cards. Give me a day of no responsibilities and plenty of naps and I'm spoiled rotten! They just did it a weekend earlier than the calendar says!

I still got plenty spoiled the official holiday too. Moma helped them sneak and get me a bracelet I had seen and wanted. I was very surprised!!! I also got a nap. Best of all I got to cook lunch for my Moma and Barry's Moma. My Moma cooks lunch for us every single Sunday! Most times there are 16 folks there! This Sunday I cooked. I even made a new desert.....a Tomboy cake. I cheated on my version but it was yummy! I'll do pics later this is just bullet points remember?!!

I think that about catches us up.....minus pics from the weekend but I'll do a seperate picture dumping post later! :-)

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!