Celebrating Inchstones: A better day

Monday, June 28, 2010

A better day

Asa is fever free and he was happy today! The down side is his nose is stuffy and he is sneezing and coughing. Nothing is coming out of his nose (not sure if that is good or bad) and his coughing isn't making him puke! So I consider all that a pretty good day!

Asa played in the floor a lot today. He scooted to Gracie's room and later watched some TV in Cade's room. He scooted from the kitchen to the living room several times today and even got the gait trainer around in the living room some. That requires a lot of leg strength since we have carpet! There are many days I just want to yank the carpet out and use the bare floor underneath!! It sure would make getting around easier for Asa! Barry may come in one evening to carpet laying outside!

And Asa has a new past time. The treadmill is our living room. Sad but true! Asa does some gait trainer work on it and occasionally Barry and I use it too! :) Cade and Gracie get on 10 times a day though. They only last 2 minutes but it is like they can't walk through the room without stepping on it. So Asa's new past time is to put toys on the belt while someone is walking on it! It cracks him up!! He thought of this all on his own. My nephew Jack was walking on it and Asa was sitting in the floor and just laid his toy on the track! Then it became a game. I'm not sure it is beneficial in any way and it is likely not a good idea but it is so fun to see him playing!!

Asa also went swimming today. It is has been too hot to even swim the last few weeks! Even in a pool, when the temp outside is in the high 90s, Asa will oveheat. Today was much more bearable and we filled his little pool with cool hose water and warm (hot?) pool water. He sat and played for 30 minutes. Cade went over towards him and Asa reached up for Cade to get him out. Cade brought him to the big pool and Asa had the best time!! He didn't get scared or startled one time...despite Cade and Gracie's best attempt, I think! He really didn't want to get out but he'd been out an hour and I didn't want to push my luck!! Even after all that swimming he wouldn't take a nap!

Oh I did use the pump 2 times today. Asa just looked thinner in the face to me and he wanted to skip breakfast. I tried to get him to try the cup and applesauce and yogurt and then I gave up and plugged in the pump. He need a good 4 bottle of Pedisure day. He really isn't even been getting 3 full bottles and very little orally so he needed this. I'm afraid to push the feedings too much cause we know when he is full, he is full and it'll all come back on ya!! Tomorrow will likely be an oral day but since we were at home I wanted to be sure he got all the good stuff he could handle!

I took him off the Reglan a few days ago. He was crabby and ill and then sick so I couldn't really tell what might have triggered the change. I dropped the Reglan and kept the Q10 and he is feeling better. I may add it back later when things aren't so iffy. It is hard to know if you see a true side effect or something from another cause but when I can control a side effect I'm gonna try to!

I cancelled OT tomorrow cause Asa is coughing so bad, especially when he is busy. Nothing is coming out and he doesn't have fever but he sounds so bad that I'd probably leave if I walked in to that sound!!! I really want to do PT and feeding this week since we missed last week so I'm hoping he drops this stuff by then!

Oh and craziest thing! I've been doing a lot of research (ok, googling) today....I know, shocking!! but I came across a blog of another Asa who is almost 3 and has mito! I'm not kidding!!! And I was googling a doctor's name and clinic not anything about a kid or blog! How crazy is that!! Wow!

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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!