Wednesday, April 30, 2008

Sunday, April 27, 2008

Bubba's Sprayground Splash

Braden's birthday was blessed with a muggy morning, but sunshine found us over the noon period, so our guests could enjoy Chicago-style hotdogs and our backyard sprayground. We had two froggie pools, an Elmo sprinkler, a whacky sprinkler, and an "oasis pool"... and a bubble machine too. The kids really enjoyed themselves, and the adults did too.

Braden got so many great gifts, and a great surprise visit from "auntie" Victoria, mommy's friend from Chicago! We were so glad they got to meet each other in person (Braden & Victoria). She brought us lots of goodies from the Secret Service store, and got to experience Baton Rouge's mellow weather, a nice break from her northern home!

Braden even tried some frosting from his froggie cupcakes, which he thought was pretty OK until mommy tried to put some further back on his tongue. He very clearly shared that he didn't want mommy's frosted finger in his mouth:-) The afternoon brought showers, but the party was mostly over by then anyway.

Thanks to those who came to share in our happy day... who knew we would see two??!! :-) Thanks to those who sent cards and gifts or called to wish us a happy day, and we missed all of you who were unable to join us, but we hope to see you soon. We will post more AGE TWO pictures later this week, so stay tuned.

Have a great week,
The Wilson's

Monday, April 21, 2008

Videos to share

As most of you know, our sitter's daughter, JazMyn, is herself a special needs child. The doctors said this one would not walk or talk, and you have seen just how far she has come in just a little over a year to walking and talking. This four year old child has not one mean bone in her body, but is EXTREMELY observant of her surroundings and any changes. Last week she thought Braden was "staring at her" because he was more awake than what she has been accustomed to.

When I picked up Braden on Thursday, JazMyn says to me: "Miss Kodi, I know what Braden does when he's mad." I said, "Oh really, what does he do?". Let me tell you, when she showed me, I nearly fell OFF the couch laughing, and called in Latacia to see JazMyn imitating Braden when he's hungry. She nearly fell over, never seeing this performance either.

So here I share with you, the video of Braden starting to get upset about dinner time arriving, so you can see for yourself the humor I experienced last week. (Highlight the links below, Copy and paste in into a new window browser).

Here is Braden:

And here is JazMyn's impression of Braden:

Monday, April 14, 2008

FIRST Haircut

This weekend we took Braden for his very first haircut. Don't cry ladies, he is still quite the handsome man with his new "do"... still curly, just shorter. And did I mention, WAY more manageable?? :-) He did so great - we took him to a place that specializes in kids cuts, and the hair stylist was so excited not to have a 'cryer' for his first haircut:-)

We are busy planning the birthday bash... and so excited for things to all come together. I think it will be a really fun day for all the kids and parents alike. We are making our very own "sprayground", since the local one will not open until Labor Day. We will do our best to rival it with our own smattering of pools and sprinklers for all sizes to enjoy.

We hope you like the pics of our little man's new hairdo!!

THE GOOD NEWS is that all tests have come back negative for extra genome information, missing chromosomal information, and for particular syndromes. This also means we have practically exhausted the possibility that this is a gene that can be passed on to other future children. (Again, I stress 'practically', since there is always the smallest fraction of a percentage that we cannot find the information through all the tests we have had done.)

THE BAD NEWS is that now the only thing left for us to do is the muscle biopsy. Our entire medical team is on board to do the procedure, but NOT voluntary. So this means, our last hope for answers will unfortunately come at a time when Braden is scheduled for another surgery, or is so sick that he has to be intubated. Since there is a CHANCE that his condition is at a mitochondrial or metabolic level, there will be certain anti-epileptic drugs we will need to stay away from until we know for sure, once the muscle biopsy has been done.

So for now, we continue to diagnose "Braden disease" as he progresses. In some other positive news... Braden saw a therapist last week that we hadn't seen since the NICU, and she was pleased with his progress thus far. That gave us a lift of inspiration to continue the path that we are on continuing weekly and bi-monthly therapies... they ARE making a difference:-) It's those little reassurances along the way in this world of uncertainty that is our normal that really helps us keep it all in perspective.

Check back soon for more birthday updates!
The Wilson's

Tuesday, April 08, 2008

Big Plans coming for the birthday boy

As Braden is turning two, we will be doing some neat things with him - including his very first hair cut!! Don't cry, ladies... we will only be trimming those gorgeous curls to prevent the late-day "Einstein" look his hair gets after JazMyn plays with it all day.

JazMyn continues to bring us laughter as Braden's official bodyguard and playmate... I think she would believe Braden belonged to her if we didn't take him home everyday! She will call on the weekends to tell Braden about her family adventures, and during the weekdays she checks in on him regularly, puts vaseline on his lips when they get dry (because according to her, he is a boy and boys don't wear lip gloss), and she is starting to try to help suction him. Of course, she protects him from anyone who tries to suction him down the nose, because according to her, Braden "doesn't like that". She also cares for him through our trials with oak pollen, and says that we just have to get Braden "out of this weather". Hilarious and adorable.

Here are some pictures of the kids together... now she wants me to get out my camera everyday to take more pictures of them. Jaz definitely sticks to our routine... she helps us pack up at the end of the day and carries his bottle bag for him to the car, makes sure I press Leapster froggie to sing the ABC's with her before we go, and then presses the button on the remote to close Braden's door.

Stay tuned for pictures of Braden's new hairdo next week, and his birthday party at the end of the month! We have invited all of our special needs friends to come celebrate with us, so we are excited. Thanks for checking on us!