Wednesday, November 29, 2006

Thanksgiving trip

Braden took another airplane trip, but this time he got to be awake for it, and it wasn't a plane just for him:-) He did very well on his flights... since he does not swallow well, we worried about his ears popping, but eventually he would yawn a few times after fussing for a few minutes. But he never cried. He traveled better than mommy, who still struggles with motion sickness.

It was a WONDERFUL trip, as we got to spend some quality time with friends and family, and the baptism renewal was a feel-good celebration. It was nice for the family to get to meet the little man, and most of them just gushed over our sweet little man. Braden got to meet Aunt Shala and his uncles Brent & Scott this trip, as weel as most of his great and great-great grandparents this trip, and those he didn't get to meet, he will see over the Christmas break.

It was a whirlwind trip, and we know that many of you sent our little guy with some gifts, but we had to leave them behind for us to open for him at Christmas time... so your thank-you's will come late. In the meantime, we would like to thank everyone who traveled to come spend the time with us to celebrate. We also want to thank those who made some sacrifices on our behalf, so that we could share in this celebration of life... the Baus family who made it possible for us to get plane tickets home, the Crawshaws who picked us up and let us borrow their van for the duration of the trip, AND baked many treats for us to enjoy, and the Hennen's who graciously lent us a carseat for Braden while we were home.

It was so nice to see everyone, and we can't wait to see you all at Christmas!
Kodi, Brad, Braden

Monday, November 13, 2006

A little inspiration from the FROGS

These pics are from Braden's first LSU tailgate this weekend, he did great! The purple hat was borrowed from our night-time sitter Eva, and Braden just had to have his own, so we got him the baby one that says "Geaux Tigers", as it was chilly Saturday!

Now for the inspiration...
My grandfather, who first told me about frogs being good luck, passed away a few months before my neice, Paxton was born. When she came into this world, she had two little moles on her, and her mommy told her that they were "grandpa kisses". To let her know that even though he wasn't with us in the body anymore, he would be watching us and here with us in spirit.

When we were sent to TCH shortly after my run-in with the tree frog that I was expecting to bring us good luck... Braden received all kinds of little froggies for his crib, his room, and people started sending me frog cards and cartoons they found in those following weeks. Once the frogs surrounded Braden in the hospital crib, when we came home, he ended up with a new little mole on his tummy that wasn't there before.

It took me a bit to put together that those frogs had invited Grandpa Rinehart to give his "kiss" to our brave little boy. I know that the angels in heaven are watching over Braden, and I even had a dream about a very large angel that sits on top of the end of his crib watching over him. I know that God is with us on our journey, hard as it may be at times.

I hope that sharing this story will allow you to open your heart to hear God speak to you as well... He is out there, watching over us, just waiting for you to talk to Him. Allow God to speak to you, I promise the reward is bountiful.

Thanks for checking in on us, we will let you know how the botox is working later this week. For now, I can tell you that his seizures (for the time being, at least) have decreased significantly. WHile the doctor didn't think this would be the medicine Braden needed, once again, he is writing his own book, and taking us along for the wild ride.

Kodi, Brad, & Braden

Wednesday, November 08, 2006

Trip to Houston

A supposed quasi-relaxing trip was anything BUT… except for Sunday night when we got there. We left Sun morning and had a pretty easy drive there. We had planned to meet up someone for lunch, which fell through, since we actually got there at about 2:30pm, and we had planned to go meet up with somebody else Sunday night, but she never called. We enough to do, as we had ANTS, ANTS, ANTS crawling all over in our first suite, so we ended up moving… only after we were totally unpacked, of course, and right when it decided to pour down rain! Yeah – not my idea of a “relaxing” Sunday afternoon:-) So we went to use a gift certificate our friend Victoria had sent us for dinner at a local cajun place called Pappadeaux, and Braden was a pistol the whole evening crying and thrashing about…. Luckily the restaurant was pretty loud, and of course he mellowed out just in time for us to get the check and leave:-)

Monday was a full day, as we were STILL trying to track down a doc to do the botox for B… so we popped in to see our Nuero, to see if their office could help us find someone, as our docs in BR who were trying, kept coming up empty. So we strolled around seeing some nurses who were a part of our care team, had lunch at our little hospital a few blocks away, and watched X-Men 3 to pass the time until our 2:15 appt with the nuero. We only saw the nurse this visit, and while Brad was a little miffed, I didn't think it was not that important to see him face to face (THIS TIME), as we are comfortable with the plan and path we have chosen to take… if we weren't, we would have demanded he come see us personally since we drove all that way – but we were OK with it. We were so grateful about the time he first spent with us explaining our situation more in-depth and what our future could look like, we hope he was spending his time with another family who was there looking for answers like we were the first time. So our great nurse hooked us up with some free samples of drugs (woo-hoo!!), and we are on another course for our meds, since they don’t seem to be working completely like the Topimax did. So we are aggressively seeking to see if what we are on will work or not, and are increasing the Keppra dosage over the next 10 days, and if no results are seen, we will take him off and try something else. There are about 3 more for us to try still.

As for the ketogenic diet, Brad & I have decided it is something we want to keep in our “arsenal”, and look at implementing after the first of the year, should we find no help from the medicines. We are wanting to wait, b/c if we find the right medicine potion, we may not need too. Being on the diet is fine with us, it just means a week of hospitalization to start, and weekly blood draws here in BR to monitor various levels of glucose & such. Secondly, if we start the diet and change meds at the same time, and we DO see a difference, we will never know if it was the diet or the drugs… and we don’t want to keep him on anything that is not necessary.

So we are walking down the elevators, when a BR doc calls to say they have an appointment for us with an ENT at 4:30 who can do the botox, and can we make it? We were 3 blocks away, so we made it. Unfortunately, this doctor is OUT OF NETWORK for our insurance… so the visit alone cost us about $250. He got us in for the procedure yesterday morning at 7:30am. Luckily, it was performed at Texas Children’s, which is IN network for us, so hopefully we won’t be getting any big bills for the actual procedure. Braden is the YOUNGEST PATIENT this doctor has ever done Botox on to the salivary glands… so I believe this doctor (who made several Consumer Reports and Parenting Magazine’s TOP DOCS lists…) took on our case, as it may be “one for the books”… pioneering infant botox to the salivary glands, IF it works. So while it may have a few risks, the benefits should outweigh them. PLUS, b/c Braden is so small, they err on the side of caution. We were supposed to have FOUR gland injections, but we had THREE, because they just couldn’t get a good mark on the fourth salivary gland, (measuring at only 3 mm), and rather than risk missing, they stopped with the three. The important thing is that they got the two underneath his jaw/chin, which are the ones that we needed to get the most to reduce secretions. If they missed, Braden could have paralyzation of the face muscles for about 3 months, but so far, he is looking good. He is SUCH A TROOPER!! They had to numb the area first, b/c they had to use a bigger needle to actually inject the meds, so he was poked about six times yesterday… poor baby. He was actually pretty good about it, and more mad about not being fed than anything.

So although we were up at 5 am, and mommy and daddy each only got about 3 hours b/c of his machine going off… we are hopeful that this will provide us with the results we are looking for. He can’t help it, he could sleep all night, and he does pretty good actually, it’s the O2 sats dropping that make us get up to suction him… not his fault. He could sleep thought the whole thing if we could find a way to suction him in his sleep! So he was tuckered out after all that and we hit the road… but he gave us a little scare on the ride home. He had one of his “episodes”, and the Atavan didn’t seem to be working, so we were on the phone with our docs in BR at a gas station in Iowa, LA trying to figure out what the next step is. At the 30 min mark post-dosing, his heart rate was still very high, but we saw a slight and steady decrease… so we decided to drive another 40 min. down the road, and dose him again if we saw no improvement. Luckily, we did, and emergency was avoided. What a ride!

I will be making another post around the weekend, as I have much more news to share... more about our journey of faith with all that we deal with, and I hope you check back in for a little inspiration that God's plan is leading our lives.

Thanks for your love, support, and prayers - always needed, always appreciated. Love to all of you, may you be blessed!!

The Wilson Family

Wednesday, November 01, 2006

Baby BOO

Our own Baby Bee became a bumble bee for Halloween. The suit was warm, so he was quite cozy and ready for a nap in it:-)

Our adventures continue as we still haven't found the right medicine potion to get his seizures more under control... we are giving that until the first of the year before we get him on the ketogenic diet. We want his meds in line first, so we don't continue to give him medicines he doesn't need.

We are off to Houston this Sunday - Tuesday... we will be seeing our lead nuerologist, and hopefully getting botox done while we are there. We are going ahead with the procedure, and our local doctors are trying to find a good doc in Houston to do the procedure.

As soon as Braden is big enough, he will be fitted with a trunk vest - that looks like a lifevest that attaches to a vacuum cleaner box. It helps clear out the pulminary areas, like a cough assist, using harmonic frequencies and 'pats'... we will have more on that as time gets closer. STill don't have the hand braces in yet, so no pics to share there yet.

We will let you know how our trip goes, we hope to get in with the dietician while we are there as well. We will update you after our next Houston trip - hope you are all well!! Thanks for keeping us in your prayers, as Braden's seizures are more frequent, we need them ever still.

The Wilson's