Celebrating Inchstones: An update...

Monday, January 17, 2011

An update...

I realized today that's it's been a while since I blogged or updated. I guess I put snippets on Facebook so I forget to do a longer post on here. Maybe I should just copy and paste all my fb post daily!

In the past week we've all passed around a cold. Asa didn't go to school at all last week. We were out for snow a few days and then he was sick. He ran a slight fever, had a runny nose and a cough. The most troubling symptoms was extreme crabbiness and lack of sleep! He'd wake up from a stopped up nose or coughing and not go back to sleep. Then he'd be soooo grouchy! The best thing about his illness was that he was an eating machine!!!!

His GI system wasn't so happy but we used more Zantac and he was doing good. He'd wake up and ask for food. I hesitantly give him his cup of Pedisure. He'd suck it down and sign more. He had so many new foods and he was sick! I couldn't believe it! Don't get me wrong, he was throwing up most evenings but he didn't seem too bothered! Usually when he is sick we have to stop the pedisure and just give him pedilyte. Then we spend a few days working him back up to pedisure and then food. I couldn't be happier that he kept up the eating pace and even stepped it up!!

In other news....Anna turned 14 on Saturday! In true teenage fashion she couldn't make up her mind what she wanted to do for her birthday. Friday afternoon she decided she wanted all the family to join us at a Mexican restaurant...that night! She better be glad we all love her! Barry's patents and my parents plus some cousins and her BFF met us and we had a great time! Then she decided she wanted to go the movies with her BFF and the boyfriend on Saturday!!! The BOYFRIEND!!! My first reaction was NO! Then I compromised! I picked the movie and we all sat together. And if she decided to make out with the boy, I'd make out with her daddy!! Lol!!! I picked an action movie with no love scenes! We really did have a good time! I'm glad Anna made some fun memories and had a good birthday! She didn't really ask for any gifts just our time and attention! A day for Anna! Thanks to my mom for keeping the little people so Anna could feel special! Anna is such a great girl, uh young lady?!! She is my helper and can almost read my mind! She doesn't ask for much or whine too often! That may change tomorrow so I'm being thankful for them today! I figure if she's made it to 14 and is still so sweet I better hold on cause she's due for a fit at any moment!!

So we get back to our normal tomorrow. Back to school for everyone and hopefully leaving these sickies behind for a little while!

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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!