Sunday, February 22, 2009

Updates and transitions

So as we celebrate Mardi Gras this weekend, it's been a busy week for us to catch you up on. Since Braden is turning 3 soon, we transition out of our Early Steps program soon, which has been providing us with four home therapy sessions a month, and weekly speech therapy at the daycare. We first got to meet with two women from Capital Area Human Services, who provides some kinds of assistance and respite help for families like ours. Most families have to go through re-certification every six months to a year to keep your child in need on the list. Graciously, they have granted Braden lifetime status, which means we will not have to go through the recertification process ever again! Secondly, they said they were so inspired after meeting Braden and I, that they will try to put Braden at the top of the list the next time an emergency respite waiver comes open - this means if we get put on the list, we could finally get some help for respite care!

We then met with seven members of the EBR school board evaluation committee which helps determine what sort of schooling Braden will receive for the next few years before entering an actual school, and what sorts of things to work on with Braden development-wise. They were all very nice and seemed to really look at how Braden can best be served to possibly transition to school one day.

We then had a nail-biting appointment to get his mediport flushed, as two weeks ago after four sticks, it would not flush. So all our hopes were pegged on being able to flush the port this past week, or we would have to face some drastic measures in the near future and possible surgery to put in a new port. With a lot of prayer and fancy positioning of Braden, it worked! Of course, not without incident, he managed to get some subcutaneous swelling of the tissue around the port when he moved around as the saline was being flushed in. Next time we have decided to use a needle that's a little too big, so there's less chance of it accidentally backing it out.

Then mommy got a surprise when she felt a sharp pain trying to lift the not-so-little nearly 35-lb Braden out of his carseat in her shoulder. She thought it felt like it did when she tore her rotater cuff in '97, but the doc she saw doesn't think that's the case this time around. Seven x-rays and 2 injections still didn't produce any answers, so this week we will see if an MRI is necessary to find solutions. Daddy had to move Braden's car seat to the outside position so mommy doesn't have so far to pull him out of the car, which we hope will relieve some of the pressure on the shoulder in trying to get him out of the car.

And meanwhile, mommy and her friend Doris are working on the beginnings of a company they have named "Baby Bee Boutique" - which will sell baby/toddler blankets, burp cloths, decorative valances for windows and cribs... and will also be offering photography services and products too. So be looking for links to these excited products soon!

Lastly, we have received news that the last of the DNA tests, and the form of Leigh's Braden has does NOT have any genetic mutations at all. This is good news for mommy and daddy in order to make informed decisions about future family plans.

Thanks for the continued prayers. Braden's health has remained primarily good through what medical professionals have deemed a very difficult respiratory season, so we appreciate you keeping our son in your prayers. We believe he is suffering from increased seizure activity, and so we are headed back to rounds of neuro specialists again in the coming weeks.

Thanks for checking on us and finding the latest things to pray for specifically in Braden's care. We continue to thank you our friends, family, and silent supporters for your love.

Kodi, Brad & Braden Wilson

Thursday, February 12, 2009

Happy Valentine's Day 2009!

I thought I would take this opportunity to share with you all the things that Braden is now doing, since he has come home on the ventilator and on the vitamin cocktail.

First, he is a LOT more alert throughout the day. In fact, if he is stimulated, he is awake for a good part of the day. (He used to sleep a lot, usually about 50 minutes each hour... and now he is awake anywhere from 20 - 35 minutes an hour, so you can see how much better he is doing). He absolutely loves his light canopy and froggie friends in the crib - he is just fascinated. He loves to take walks and enjoys watching the scenery, same goes for car rides. While he may protest the actual MOVE from on location to another, he certainly enjoys the journey. Maybe that's a lesson for all of us... most of us don't truly relish change, but we can take the time to at least enjoy the scenery from point a to point b!

Second, he's finding his voice again. He has figured out how to cry through the vent, and he takes every opportunity to do so to express his unhappiness or displeasure with particular situations - mainly getting his shirt/jacket on & off. His cry is so sad and pathetic, he really knows how to play to your sympathetic side. He will also jerk that head back and forth in protest of the suctioning... he is not a fan at all. He will also express happiness, just not as loudly and pointed as the crying... he will sing-song a little when he sighs happiness. And on rare occasions, he will even look at you or in the eye when he's doing it!

Lastly, his latest "play" with his caregivers is to kick his legs wildly while changing a diaper. While most of the time, changing his wet diaper like this just makes us laugh at his display of two-year-old attitude, trying to do the same with a dirty diaper is not as fun and can be challenging at best.

He has gotten so big - nearly 35 pounds now, and wearing a size FOUR!! The kid isn't even 3 yet... yikes!! Pants are slightly long because he's always pulling his legs up like a frog, but he is definitely a size 4. I've already had to put away all of his size 3's.

Happy Valentine's day... it's your chance to tell those that are important to you that you love them. Don't be shy, you may never get the chance if you don't do it now. Spread the love.

We love you guys for checking in on us!!
Braden, Brad & Kodi Wilson

Tuesday, February 03, 2009

Heart Day is on it's way

Our little friend JazMyn just couldn't wait to give Braden his valentine's gift - the one she picked out just for him... so we already exchanged our little tokens of love. The new kissie frog resides atop Braden's crib, at the end, so the new frog doesn't crowd the old ones. But here are pictures from the day she gave him the frog - as you can see, it's HUGE, and is the size of Braden even!! We love you Jaz, and the entire Breaux family... you will always be special valentine's to us!!

So start shopping now if you haven't, even the kids can't wait! :-)
The Wilson's