Celebrating Inchstones: Too much!

Wednesday, April 6, 2011

Too much!

Sometimes too much of a good thing is a bad thing.....no, a BAD thing!

Asa really only eats his 3 cups of Pedisure a day. We are on a roll if he will eat some real food at supper or snacks during the day. Some days he won't have anything other that the Pedisure and some days he'll have lots of food and we take away a Pedisure. Yesterday he was an eating machine!

He had a Gogurt tube for breakfast with 1/2 cup of Pedisure. Before we left for school he also had 1/2 of an applesauce cup with some Nutella mixed in and a cup of Pedisure on the way to school. This alone was a great feeding day! I'm thrilled to get in applesauce OR yogurt.

Now fast forward to 2:30pm and school pick up time! I walk in to him in the wheel chair with a huge bib on, surrounded by dirty towels and sick and gaggy. Turns out he wanted a chocolate pudding cup while at school. Then he signed "more" so he had another pudding cup. Then he tried a raspberry icee thingy. He was filled to the gills and overflowing! Oooooppps! See, I didn't tell the teachers how much he'd eaten at home and he kept signing "more" so they gave him more, who wouldn't! Bless their hearts!

We got to the car and all that chocolate started coming up before I could get the drain bag hooked up. He was so exhausted and pale and nearly lethargic on the way home. I began to wonder if he had a bug because he looked so sick. After we got home and he napped some more, he perked up and was good to go by this evening. He had a cup of Pedisure at 5pm and again before bed. I was hesitant about that bedtime cup and stood firmly on a NO when he signed "more" after it!! Learned that lesson all ready today!

Bless his teachers hearts though! I would have done the same thing. It is hard when a kid who won't eat really wants to eat "more"!! I've overfed him here too. And they didn't know what he'd had before school. I also think he was tired and maybe getting too warm. It was the perfect storm really! His teacher called to check on him tonight. I think she felt bad that he got sick and I felt bad for them that he puked and got so sick for THEM! I told her he does that nearly everyday and I hated that they had to deal with it. Last night I also wondered if it was the chocolate from the pudding. We've had a few issues with chocolate and I will pick vanilla over chocolate for him. His teacher said she thought they had vanilla. I suggested they repeat the feeding but with vanilla and see if he gets sick! Hahaha, she said NO THANK YOU!

I really love Asa's class and his teachers! We had a chat yesterday about next year. I agree that he doesn't really fit in this class anymore. I feel so blessed that he had this adjustment time though. It is a small class so they can do more. And Asa has made huge, huge strides since October! They say that everyone has fallen in love with him! I love to hear that! And Friday, they took a walk in the hallway with his wheelchair and he rolled down the hallway waving at everybody. These good reports make my heart happy!

Oh and when Cade and Gracie came home from school, I had Asa asleep on me in the recliner and he was hooked up to drain. Cade came in and said, "What is that?", pointing to the chocolate filled bag. I told them it was pudding. Gracie said, "How'd he get pudding in there?"!!! See, we just aren't used to him eating! :)

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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!