Celebrating Inchstones: Busy Summer Days

Thursday, July 21, 2011

Busy Summer Days

We've been pretty busy around here! Cade has just finished up his baseball season. They went 18-0 in the regular season! They played hard in some post season tournaments. And this past weekend was the district tourney but the boys just didn't bring their A game. They lost the game that would have sent them to the state tourney. I hate to end the season but it's been a good, long run! Really, so many families had things going on that it seems not going to state was a good thing!

We went to a birthday party at Chuck E Cheese on Saturday. Asa has been there before but only during the week and never to a party. When the party got loud I took Asa up into the climbing and slide area. He loved being up high and was just laughing and laughing!

He didn't mind the big Chuck E and even gave him a high five! Still the birthday balloon was more his size.

On Monday, my mom and I took my kids and my nephews to see Cars 2. Asa has never been to the movies because he isn't into TV and has sensory issues. But since we never really know how he'll react I decided to try Asa in a theater. Well, turns out Asa isn't a fan!!!! He did sit and watch the Buzz and Woody short at the beginning but he was not a fan of Cars. I had tried to prepare him for the show by telling him we were going to watch a big TV and it would be loud so we'd cover our ears. As I'd "cover our ears", Asa would hold his cheeks instead of his ears! So cute! It didn't help that it's 100 degrees here! Asa was over stimulated and gagging and hot so I drained his tummy and tried to take him into a store to cool off. Ha, the store wasn't even cool. After the movie we went to pizza place and I went to the bathroom to change his diaper. As I washed my hands Asa splashed in the sink! Why didn't I think of this before....the sink calmed him, cooled him off and kept him happy! Next time I'll remember that!!!!

Yesterday, we went to visit my SIL and took a nephew home. They just moved and have a splash park nearby. Asa wasn't a fan of the big sprays or getting splashed but he did like sitting and playing with this little fountain. They sprays didn't stay on but were activated by the kids. It seemed like the kids just ran from station to station to find the water. They exhausted me! Hehehe. We finished off the day at the neighborhood pool!

All in all, it's been a busy few weeks and we are tired!!

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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!