Celebrating Inchstones: What a weekend!

Monday, May 17, 2010

What a weekend!

I had to go back and read the last post to see where I let off!

Saturday, Cade and Gracie both had early ball games. I had Asa's cooling vest, cooling blanket, feeding pump, fan with water bottle, big umbrella, all the extras he needs, packed up and ready to go by 8am! Then Anna got up and begged me to let her stay home with Asa! It didn't take me long to say OK since they both would be so much happier at home. Those 2 are homebodies!! I'm pretty certain they'd be fine never leaving the house if we let them get away with it!

The games were so much easier without Asa. Since the times overlapped I spent some time going from field to field to check out the action on both teams! Unfortunately, Cade's game was less than stellar so I spent most of the time at Gracie's game! Cade's team lost 14-1 or something! This kid pitch stuff is serious business and I think the boys can let the other pitcher really get inside their heads! Then the self doubt spreads like wildfire around the team!

Gracie's game was really exciting! Her team played better than they ever have. They are a very new team and only a few have played ball before! One little girl is tiny and not a big swinger. When she got a hit and got to second base on errors, you'd thought she'd hit a grand slam by the way we were cheering! Even the ump had a huge grin on his face! It didn't hurt that we were playing a team whose coaches have horrible attitudes! Last time we played them they halted the game for 10 minutes to argue and yell! Really sad for the kids on his team! Gracie's team didn't win but they did so good! And her coaches are great! On yelling or arguing from them!

We got home from the games just in time to pack up and head to a family reunion with Barry's mother's family! There was great food, as always, and the kids had a blast! Asa did so good and he pushed around in the gait trainer. He also scooted around on the table like he owned the place! I think we may have learned something too. I tried giving Asa a cookie and he wouldn't touch it. Then he had on his sunglasses and he finally touched it and played with it! Maybe even the sight of food is gross to him! Would it be weird to feed him while he wears his sunglasses!

It is funny cause we went to a lot of reunions when I was a kid. I dreaded them. I couldn't understand why all these people wanted to get together when I barely knew any of them. Now I'm the one dragging kids to reunions each year! And they really didn't complain but I was looking so forward to it. Sorry Moma and Daddy for all the mouthing over reunions! :)

After the reunion, the kids went swimming! My mom had my brothers 4 boys and they joined in. Then Barry's 2 nephews joined them! Barry commented that there was 10 kids in our little pool and I though he was exaggerating but when I counted it up, he was right! Technically, Asa and Simon were in the baby pool on the deck but still! We said next year we were gonna have an inground pool! And with all 10 kids shoveling they might get it done this year! lol! The kids didn't think that was funny!

Sunday was fun too! Barry and I had the nursery and it was funny watching Asa with the other little girl in there. She is 1 and he does well with her. Not sure how he'll do in school when he is the youngest and delayed! I know, don't start worrying yet!

After church we had lunch at my moms....like every Sunday, the woman is a saint!! My dad took the kids to a creek behind the house and I sat on the porch with Asa and Moma. Asa went to sleep and I got to talk and read the paper!! There is no better way to spend a Sunday afternoon!

It was perfect until Daddy brought all 5 kids home covered in water and sand! Oh and Gracie found a fish in a little puddle in the creek so she brought it home and named it Nemo! Great! My cousin just happened to be there and he just happened to have an aquarium and my dad so lovingly clean it up for Gracie. So now we have a creek fish, in an aquarium, in her room! Surprisingly, he made it through the night! She's decide we can let him go in a pond if we buy her a goldfish instead!

So such a busy weekend and the only picture I got was this one! And that is how I felt after this weekend!

Now onto my Monday of calling doctors and insurance. Seems like I spend hours on the phone each Monday starting at 8am!

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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!