Celebrating Inchstones: Oh, what a day!!

Tuesday, September 14, 2010

Oh, what a day!!

I've had a whole other post rolling around in my head. A post about grow up and time passing and school starting. It was gonna be great!! Trust me, you should check back in for it! But the events from today trumped all that deep thinking!

Asa had a hard time going to bed last night. Then he woke up at 5am! He wasn't too I'll though so at least I could go on with my routine. He drank his Pedisure easily too. I was having an easy day!

We went to feeding therapy. Asa did ok. He actually took a spoon of oatmeal to his mouth while we were talking. He didn't eat it but it touched his lips. I'm impressed! Jill just had to remind me that Asa only has 3 more therapies with them! 3!!! I had not counted them! And the last week we have plans for a fall break trip and won't be there! So sad!!

While Asa was having OT I ran an errand to talk to a group that is starting a HBOT clinic in Jackson. HBOT is hyperbaric oxygen chamber therapy. Some people are using this to treat things like CP, autism, mito and other developmental delays. There is controversy because it is hard to measure improvements and there is no standard amounts. It is kinda new territory but I do believe great things can come from it. I've seen video and blogs of too many kids to just discount it altogether! The problem is that it is expensive to try. I was only aware of big clinics in other states. I almost ran off the road when I saw the sign for this clinic last week! Researching this will occupy my time after Asa starts school!

Now the fun begins!!

I drove thru and got lunch for me then Asa and I had a picnic in the car. I was sitting in the back with him and the van was running with the AC on high. Asa drank his Pedisure and I ate. He started getting crabby and sweaty. I just thought he was tired from his early wake up and the fussing got him sweaty. Plus heveanted my cup of sweet tea. Not just the tea cause I put some in his cup! Finally the screech got to me and I gave him the huge cup. Then we went to Walmart!

As I got him out of the van I realized he was gaggy and droolly. Thankfully I grabbed a cup and burp cloth! When we got inside heveas completely drenched in sweat. He wouldn't lay back and go to sleep but instead he dozed sitting up. He gagged several times and I was ready. I was cooling him and begging him to fight off the puke. I have to say, I thought I was doing pretty good. Heck, he was asleep and hadn't puked, I was all out sure he beat it!

Now Anna says I can strike up a conversation with a tree. And when I saw a lady wearing a Special Needs Baseball Association tshirt I just couldn't help myself. We talked about delays and diagnosises. We talked school and therapy. I was enjoying my little visit. Then Asa woke up and projectile vomitted into the other lady's buggy!! Yep, just that quick! He just woke up and there it went! Thankfully he didn't hit anything in the bug and only hit the empty end. Still I'm sure they switched buggies! And I hope Walmart got the right aisle as I was dashing to the bathroom to clean us both up. I managed to get most of the rest into the cup but we had a mess!

After that Asa was better but not happy. I came across another lady who had a little girl in an umbrella style type SN chair. Of course I couldn't let that conversation go!! And Asa was empty, right. I still didn't get him near them though. So I had another nice conversation! Anna will be so proud!!!

After the shopping and paying and loading and getting in the car, I realized what had happened with Asa. The fan was set on defrost so no cool air was coming through his back vents. He overheated!! And it wasn't overly hot. I was very comfortable while we ate. That just shows you how easily it can happen!

He did go to sleep as we drove to school pick up but woke up while we still waited. And he was ill!!! I tried everything short of getting him out and he just screamed! Oh and slapped his legs. That's his new way of showing frustrations. He just slaps whatever is nearby. Buckled in the carseat all he could hit was himself. When Cade got in the car, he commented how red Asa's legs were. We got home and I think he may have bruised his left leg! That's gonna look great!

I spent an hour calming him after we got home. Now he is upstairs playing with Cade and Gracie. He pointed to go up there. This is a new and helpful skill! Makes it much easier to figure out what he wants. Oh and in the midst of his fit at home, he started signing "Moma". We've been working on this but I'm a little offended that he used it in anger! Oh well!

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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!