Friday, November 16, 2012

Busy Week

This has been a busy week for 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 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!