Celebrating Inchstones: A sweet milestone

Monday, December 13, 2010

A sweet milestone

I am updating from the computer. The real computer, not emailing from my phone! Our desktop played out and we got a laptop. The keyboard locked up after 4 days! Seriously, it just locked up!!! I resisted the urge to blame Barry and Anna cause they picked it out while Asa and I played in the toy store. Turns out it was likely a crazy glitch that had nothing to do with the computer or operator error! So here we go with the replacement. I guess the newness has worn off cause I haven't had to fight anyone to get on here tonight. It is much easier to blog from a real computer though I LOVE my phone!!!!

I'm blogging mainly to tell you of a huge milestone! Asa has been sooooo good today! I know that may not typically be news worthy but here it is!!!! Asa doesn't self soothe, self play or even sit without entertainment very often! He is high maintenance. I accept most of this blame but you gotta do what you gotta do when he can't sit, reach, activate toys, etc on his own. By the time he got the skills he developed a huge dependency on someone sitting beside him and entertaining him.

Today though Asa lay in the floor near the Christmas tree and played for nearly an hour and I got to take a shower without him howling for me! And this afternoon he played upstairs with Cade and Gracie for a while! Tonight he has played Lego's with Cade for nearly an hour. I know a picture can't capture the bliss of the moment so instead of interrupting them I just watched and soaked it all in!

Asa dumped the whole bucket out while Cade was building. Then Asa would pick up a couple and go "mmmmmmm" and "uhuhuhuh", which are basically his only happy sounds! He banged a couple together and then would hold them up like he'd done something amazing. He'd lean in to give Cade a head hug. He watched Cade like a hawk! And Cade just played right on! They were adorable! Just so normal. Except a normal 3 year old would have probably been chewing all over the Legos. I resisted the urge to get all therapist and teachery on Asa and turn the play time into some type of work. I didn't cheer him on. I didn't take pics or get in his face. I just sat quietly across the room watching the moment! Sometimes that all you need!

I hope this a new way Asa will choose to play. One of his IEP goals is for him to learn to play alone and with other kids! Maybe this one is kicking in already!!!

Another plus of using the real computer......spell check! You're welcome!!

3 comments:

Robin Brown said...: That's awesome! I totally get how big that is! Bet Cade enjoyed it, too. Play on Asa!:); December 13, 2010 at 9:52 PM
Christina said...: Totally love it!!! Actually, I am LOVING all the positive posts lately.; December 13, 2010 at 10:00 PM
gg said...: How peaceful you must have felt watching your two little men playing. It's amazing how the small things can be SO big!!! Hugs to Asa and the rest of you guys!!; December 13, 2010 at 10:13 PM

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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!