TWO YEAR COLLAGE

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

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:
http://s119.photobucket.com/albums/o152/kodi_beachdig/?action=view&current=Bradenvideo.flv

And here is JazMyn's impression of Braden:
http://s119.photobucket.com/albums/o152/kodi_beachdig/?action=view&current=JazimitatesBraden-1.flv

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!!

LATEST DNA TESTING results:
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

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!
Kodi

Happy Easter II

We spent a wonderful day at the Heckert's for a shrimp & crawfish boil. See daddy help Jon put the first batch of crawfish out on the table. Mommy made a checkerboard chocolate & mint cake - it was delicious!

As you can see, the mommies made Braden & friend Jackson get in some silly prop costumes, and we got some neat pictures while the azaleas in the Heckert yard were in bloom - the perfect Easter backdrop! When Jackson is asked to give Braden some love, he just snuggles up to him - it's so adorable, as you can see:-)

Mommy heads off to San Antonio for her convention this week, then Daddy is off to Austin the following week, so I will be getting lots of one-on-one time with each of them:-) I know I will keep them busy and that they will miss me much!

Thanks for checking on us,
The Wilson's

Happy Easter 2008!

He's a "Wee Bit Irish"

Happy St. Patty's Day!! We went to the St. Patty's Day parade in Baton Rouge with the Heckert's this weekend. A lot of the parade riders thought Braden and his little hat were too cute. He even caught some beads on his own with his foot:-)

Jackson enjoyed most of the parade. He liked playing with the little hat, but he sure didn't like wearing it, you'll have to agree when you see the picture. Although he is crying crocodile tears, I tell you this picture makes me laugh out loud. He is such a little character.

We got two test results back from Texas Children's. The ionic transfer and microray tests were negative, which is good news, but still leaves us without a diagnosis. We are still waiting on one more to come back, so we will keep you posted. We met with the neuro, and he agreed that maybe it was time to get Braden off of at least one of his epileptic meds, to see if it helps him perk up a little bit without triggering more seizures (oh the joys of epilepsy). In 8 weeks we hope to have taken him off the Keppra altogether, leaving us with the zonegran and the clonazepam. Pray that this new regimen will accomplish both goals for Braden!!

If you live in LA, and get a chance to help us pass some real LA legislation to help special children, please visit: www.thriveinfive.blogspot.com and sign the petition, copy and paste a letter to your local legislator, and review the research behind the mission. We do appreciate it.

Well this weekend we will be celebrating Easter with the Heckert's at their annual crawfish boil. We plan to bring the traditional northern honey-baked ham:-) We should have some cute pics of the boys next week with their bunny ears on, so check back with us soon!

The Wilson's

Braden got the ALL CLEAR, we see his Neuro in Houston this week

Well Braden got the all clear last Friday that his most recent pneumonia has cleared up and his white cell count is down to within "normal" range at 10,000. Lots of people we know are suffering from respiratory infections this time of year, including Nana Wilson who got something called "Adult RSV". So we continue to pray for our other special friends with respiratory weakness who seem to be having similar issues.

This week we head to see our head neuorologist. We will be discussing our medication regimen, but not really much else. As Braden and his brain continue to grow, evolve, and change, so are his seizures and their patterns, so every week brings a new "normal". We are adapting to learning to live with the constant change, but as some of you know, it's still hard to watch him have seizures every single day of his life.

The pictures are of Braden and his new bunny that our adopted "Grandma Glass" (Jackson Heckert's grandma) bought her adopted "grandson" (Braden) for Easter:-) He was really checking that little animal out.

He is slowly getting more "vocal" about his needs and wants. Just when Latacia can't figure out what he's fussing about, as soon as she moves him to his favorite chair to sit among the other kids, he becomes his usual mellow self. Maybe he likes being around the other kids, or maybe it's just a chance to hang near his "bodyguard" Jazmyn... she makes sure the other kids don't bug him too much, but she must have her kiss to Braden's head each morning and stroke his curly hair, and checks on him every half an hour or so taking a break from her busy play schedule. She usually isn't so happy when the speech therapist shows up, because they are bugging her Braden and according to her, they need to leave her Braden alone, because "he doesn't like that". It amazes me that even a four-year-old can discern his facial expressions!! :-)

We plan on spending St. Patty's Day and Easter Sunday with the Heckert's, so we will have some fun pictures to share next week!

Love to all,
The Wilson's

Brian & Jenny visit; Trip to Houston: Genetics; and ANOTHER pneumonia

Braden had the pleasure of hosting his godparents two weeks ago, uncle Brian and aunt Jenny. Aunt Jenny read him bedtime stories and napped with him while she got her rest growing us a cousin for Braden. One of the neatest moments of their time her, was that when Jenny was holding Braden, his little cousin was kicking him and somewhat "claiming his own territory". Uncle Brian told him stories about building stuff for outer space, and surprisingly he didn't go to sleep:-)

Last week we traveled to Houston to meet with a genetics doctor who specializes in mitochondrial disorders. After much discussion about Braden's gradual progress over the past two years, we are less certain that he suffers from a disorder of this nature. However, they took blood to run tests for some other things to look at genetically. Some of it is over my head, but from what I understand they will be looking at "micro-rays" on the DNA which looks at little spots of extra or missing information, they will be looking for similar information on his "X" gene, and also looking for information on transferrence of some nature (wish I had more to share, but this one was kind of over my head). Once these tests are back in about 6 weeks, we will be able to decide if a muscle biopsy will be in our future or not. We have decided at this time not to pursue it on it's own, since Braden would need anesthesia & he doesn't do too good coming off of it, so if an opportunity arises for us to do it while he is already intubated, we will do that. Otherwise we will hold off indefinitely.

So the picture of the dancing pigs are statues in the Clinical Building at Texas Children's Hospital, where Braden's genetics doctor and neurologist have their offices.

This past weekend Jackson and Braden got together to take some Easter photos together - so be looking forward to those in the coming weeks.

Yesterday we were diagnosed with yet ANOTHER case of pneumonia, this one more severe than the last, as his white cell count was very high at the 25,000 level (normal is 8,000 - 12,000), and a mere 2,000 shy of a forced PICU admit. We have convinced our team to once again treat him at home, however, we are on strict orders to bring him in should we not see adequate progress - so please keep our little fighting Braden in your prayers for a quick recovery. We will be reevaluated on Friday.

Thanks for checking in on us!
The Wilson's

Happy Heart Day!

We got some great pictures of the boys at Jackson's birthday party as he turns 1. I think Braden wants his own little wagon - he enjoyed it just as much as his stroller rides, watching the scenery go by, and hanging out with his buddy Jackson. He also seemed just fine with the swing, but we couldn't tell if he really liked it or not.

We wish you all a Happy Valentine's Day too...
Hugs and Kisses,
Braden, Kodi & Brad

We left Braden...

Well, God must have thought that Brad and I needed some fun time away from the baby, because last week an opportunity was dropped in Brad's lap to go to the Disney Institute Keys to Success Leadership Seminar at no cost, and I was invited to join him. In a matter of mere hours we had complimentary hotel rooms, flights, and someone we trust to keep Braden.

His daytime caregiver, LaTacia graciously agreed to watch over our little guy for 3 nights. We told her daughter JazMyn that Braden would be moving in for a few days. She replied, "Braden and I are getting an apartment?". Hilarious. For a week until we left she kept referring to her bedroom as "the apartment". I asked Jaz to take special care of Braden while his mommy and daddy were gone, and let me tell you that kid really took that to heart.

She was Braden's little care-giver, and was telling her mom and grandmother how to and not to do things with Braden. LaTacia's mom takes special care of Braden too... and JazMyn saw her grandmother suctioning Braden, and told her, "Don't suction him like that!" Can you believe it?? What a scream she is... she doesn't like to be suctioned down her nose, so she was protecting Braden telling grandma not to suction him like that. I was laughing so hard hearing the story from LaTacia. Braden did just fine while mommy and daddy took a work trip to Florida, and they even got to play a little bit too.

I have attached some pictures of mommy and daddy being little kids at Disney World. (Please note how much we got "into" the ride... our faces are priceless). They are already talking about when to go back and take the whole family... it truly was a "magical" experience.

Hugs to all,
The Wilsons