Celebrating Inchstones: PAUSE!!!

Wednesday, April 7, 2010

PAUSE!!!

Can we just hit the pause button? Can't we just stop the clock for a little while!

Asa is 2 1/2 today!! As close to 3 as he is 2! When did that happen?!

And you know what happens at 3? School happens at 3!! We have a meeting tomorrow for his last 6 month EI goals. Next meeting will be for school transition. Then we'll have IEPs. If you don't know what IEPs are be glad....at least that is what I'm told. I won't know until Asa is 3, which is 6 months from now!

And mostly what I'm so wary of about him starting school is myself! What will I do with my mornings free? Barry said "get a job" but Asa will only go to school for 1/2 days. Who hires people for 3 hours a day? It's funny because when Gracie was almost old enough for school, I was soooo excited. I had plans for my days! Now I'm holding onto the school house doors for dear life! Who'd thunk it!

And this 1/2 birthday bring about a whole bag of 1/2 year specialist and appts. We got a yearly pass from some doctors but the biggies we see every 6 months. So this brings up some more fun. Last week we got a letter stating Asa's GI was leaving Vandy. Oh, and the GI clinic will no longer be coming to Jackson. We'll have to travel for this appt. too. And I really liked Asa's GI. So then today we get another letter today stating that the geneticist was leaving too! Now, I really, really like the geneticist. He would sit right down with us and talk like normal. Not that complicated doctor speak that always ends in a "and so, what this means for you is....". Yeah, cause that is the only part I cared about anyway but thanks for the complicated, long, drawn out lesson you gave me!

So now we have a new geneticist and new GI! The geneticist isn't soooo new to us. He is the medical advisor for the UMDF group in Nashville so we've chatted a bit. Funny thing, I emailed him to see if he had a GI preference for Asa, with the mito and all. Who knew he'd be our geneticist too!

And I'm sure that was long and rambling so forgive me!

Now on to Gracie. She'll turn 7 in 2 weeks. Really, when does this stuff happen!! Do they grow while I'm sleeping! So she was standing next to me last week and I noticed how tall she is, like a big kid. I tried to bargain with her and let her turn back to 5 on her birthday instead of 7. She said no. Well, at least I tried.

On a serious note, could ya'll remember a little mito friend in prayers? Her name is Brigid and she is very, very sick. She has battled much more than I can imagine. And now she battles again. This is wearing on her little body and the bodies and minds of her family! Please mention Brigid in your prayers tonight!

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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!