Celebrating Inchstones: November 2012

Friday, November 16, 2012

Busy Week

This has been a busy week for Asa....in me, in turn!

On Monday, Asa's school had a Veteran's Day program. His school is a pre-K center and all the classes are for 3, 4, or 5 year olds. All the classes were divided into the 5 branches of service and gave a little presentation of their branch. It was adorable and all the kids did so good. It was just a moving little program and I was so glad that Gracie and I got to go.

On Tuesday, Asa had aquatherapy after school. So far he's been missing school for aquatherapy but he really loves school and it messes up the whole routine. We had to switch therapist and I hated the thought of that but as she said, another set of eyes may see something he would benefit from better. So far so good but becuase of holidays he hasn't had school and then therapy until this week. And it was a re-eval and done in the therapy room instead of the pool! I was afraid he'd revolt! Each morning I give him the ipad and his talker app and talk about school. He usually pushes the "pool" button though! But, thankfully, he did great! And I mean GREAT!!!! He played, worked and showed off all his skills, even some new ones! He did a little crawling and she didn't even ask him to try that one! What was even more facinating (or disturbing) about this eval was that he was obsessed with the therabands. As long as he was working for a band, he was WORKING! He was so focused on the bands. He'd work and work until it got smoothed out or wrapped just perfectly. I've never seen him so focused. Usually he gets frustrated or distracted and makes you do for him or he gets mad and just screams. Not Tuesday! He was FOCUSED! Too bad it was on bands and not on speech or learning colors! :)

On Wednesday, his PT texted me that Asa had jumped while holding one hand and got BOTH feet off the floor!!!! He has been trying and trying to jump! Now is trying to jump all the time!

On Thursday, Asa peed on my foot! How's that for newsworthy?! I was cooking supper and Anna started a load of laundry. I stripped Asa down and tossed his school uniform in with hers. I left him naked (neked!) while I attended my supper. He walked around naked (neked) for a few minutes and seemed to enjoy it since he is never nude. Suddenly I noticed my foot getting warm! Asa had stood next to me and peed on my foot!!! I'm sure he didn't mean anything bad by it though! :) And then today!

Today was the Thanksgiving meal at Asa's school. I had the best time. The food was great and Asa was sweetie! It was a lot of fun! I got all kinds of happy reports about Asa from folks that see him everyday. He loves school and I can see why...the folks around him are amazing!

Along the week we've also discovered some new things about Asa. He usually loses it on the way home or when we get in the door. He screams, kicks, slaps himself, is inconsolable and just plain ole on fun to be with! We usually just ignore him so we aren't giving him attention for a negative behavior. One day I told him to "sit on the naughty stool", which I completely made up in a moment of desperation! Asa hushed, got off my lap and walked in the direction of the bench ready to have a timeout! He got a little confused about which seat was the naughty seat though. At any rate, I was thrilled he knew to calm himself though!

We've also noticed that Asa is happily trying new foods and eating more and more. Unfortunately, he is also pocketing many bites in his cheeks and not swallowing. I usually have to go fishing in his mouth, dodging teeth, to clean out his cheeks. NOT FUN! I've got a call in to the ped for a referral back to feeding therapy to work on this while he still has an interest in eating. And I thought maye it was isolated to him eating at home but his teacher said he had eating breakfast several days and was trying to get the other kids lunches at school! How awesome is that?!!!!

And also, he has gone to bed by himself several nights this week! After 5 years of spending at least 30 minutes, more like a hour, it has been soooo nice to just lay him down, turn out the lights and he goes to sleep! Ahhhhh, peace!!

So, I guess I've just spent too much time and too many words just to tell you that my little baby is growing up! He is growing, developing, gaining independance and I'm loving it!!!! :)

Tuesday, November 6, 2012

Exciting news and a request!

Our super sweet mito friends have been accepted into a drug trial for a promising new treatment for mito. They will have to travel from Millington to Ohio every 3 months while Jackson is in the trial. They are selling Boston butts, turkeys and hams from Corky's to help with the expenses. I can't even tell you how deserving this family is! Emily raises money for the UMDF with a 5K in March every ye ar. She organizes our family meetings and welcomes newly diagnosed families into the area. They are true mito warriors and now they need some support of their own! This drug is having amazing results on many of the kids in the trials. Asa doesn't have the type of mito they are trialing the drug on but they think the drug will help all mito patients. It is truly the first promising treatment for mito! I'm so exciting for Jackson and his family! If any of you local friends place an order let me know and I'll pick your order up when I get mine. I'll deliver right to your door! And if you aren't interested in the meat then please consider just sending a donation. I'm terrible at fundraising and asking for money but this family really deserves this chance! So, here's Emily's Facebook message: Ok FB Friends.... I am selling Corky's Smoked Boston Butts $25.00 (4.5lbs. feeds 10-12), Spiral Sliced Honey Glazed Hams $40.00 (8lbs. feeds 12-15), and Smoked Turkeys $30.00 (8lbs. feeds 12-15) just in time for football season, Thanksgiving and Christmas, New Years! All meat will be fully cooked, wrapped, bagged and then frozen for food safety. They will be delivered in a Corky's gift box with heating instructions included. In order to be delivered by Thanksgiving I must have all orders by 10 A.M. on Nov. 13th. Orders can be picked up on Nov. 20th with time and place to be announced. You can pay me in person or mail me a check. I must have the money when I place the order on the 13th. I know this is quick so spread the word fast! Email all orders to me at Mitojack@gmail.com Mail checks to Emily Culley 8852 Herring Hill Millington, Tn 38053 Thank you all so much for your support through out this mito journey! Here's Jackson's blog if you want to get more info on the sweet guy!

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!