Saturday, June 23, 2007
We are headed home for the Fourth of July holiday to spend time with our families in Kansas. We are so blessed Nana and Grandpa are bringing us home to vacation, celebrate our wedding anniversary, and watch grandpa go to his NASCAR driving school in Kansas City at the end of the week. We are making a whole family event to watch grandpa drive a real race car. We are flying in June 30th to Wichita, and will fly out of Kansas City on July 8th.
This last weekend we met up with baby Jackson and his momma - we each had a patriotic photo session, and then the mommy papparazzi took our pics together in the stroller. We are buddies, and we are both OK with sharing our space and things together. Jackson is a neat baby with something mommy calls a flirty smile. She makes sure to love on me lots, so I am not jealous at all. In fact, I found it quite interesting to watch mommy hold Jackson while I was chilling out in my stroller. Jackson kept looking at me and then mommy, like he was figuring out we belonged to each other.
Mommy and Daddy are having a good time playing with me lately, as I have started shaking my head back and forth a lot whenever I feel like it, so they like to join in and make it a party. Maybe they can get a video of my 'headbanging' and post it on the internet for next time. I am still trying to sit up more - usually to cough, but I am starting to figure it out and experiment a little outside of that, engaging the ab muscles to peek at something. Maybe some day I will be so inspired to sit up to grab something...
We should have some neat pics to post after vacation - so check back with us soon!
Braden (& mommy & daddy too)
Monday, June 18, 2007
We headed to Houston for Father's Day weekend and got to enjoy ourselves and relax a little after some heavy workloads for mommy and daddy at their jobs. The hotel we stayed at had a Mexican soccer team staying there, and fans were lined up outside like they were waiting for a rock star. Then the restaurant we went to had many more players and adoring fans making the place quite hectic. Braden and mommy treated Daddy for Father's Day to dinner at Fogo de Chao. Braden was very good all through the wait and through dinner - our near-table neighbors were quite impressed with Braden's ability to sleep comfortably and soundly in a place that was buzzing like crazy. He took his nap near the wine rack, and seemed to enjoy the sights of the restaurant too, like the glass room where ribs were being smoked.
We saw Braden's neuro guru, Dr. Wilfong. We were able to get some answers to pending questions, but mainly things are status-quo. Braden had not had a seizure since we left the hospital with pnuemonia until this past Friday, but he still has not had more than 6 waking seizures in a day since. The doc says that it is typical for children who have infantile spasms to slowly grow out of them, in spite of all the medications and therapies, and it can be common to see a seizure-free period after a child grows out of them, possibly forever. BUT in our case, that is not likely, and we will probably develop another kind of seizure by the time Braden is school-age, but we could see many years of seizure-free activity. This gives us some hope for his development, as Braden has made some wonderful improvements in this seizure-free period. The doc feels we should start weaning Braden off of his meds, but it will be slowly over time. So for now, we will not increase anything medication-wise, and as he gets bigger this will be a self-weaning process. If we see a longer period of seizure-free activity, we will look at doing a 23-hour EEG study to determine Braden's true seizure status and potentially stopping medications... but who knows when or if that day may come.
While Braden's last EEG done in the hospital a few weeks ago showed significant improvement over previous EEG's, Dr. Wilfong says that this is to be expected, and that's why EEG's and MRI's are often repeated as a child grows.
While we suspected that Braden's "blue episodes" might be autonomic seizures, Dr. Wilfong explained that we can probably rule that out as a possibility, as stimulation seems to bring Braden out of the episode. Since a seizure is something that cannot be stopped, regardless of intervention, it is therefore probably not a seizure. Furthermore, those kinds of seizures occur in children with a different and unexplainable kind of seizure activity, whereas we know ours is related specifically to the brain injury.
We are so blessed to be a patient of Dr. Wilfong's, and barring any change in Braden's seizure status, we will not see him again until early December. We feel that we are in the hands of the most capable medical team possible regarding Braden's seizures, and although it is expensive and inconvenient, we feel that our trips to Houston are worth the efforts. He says that until Braden is about 3, there is nothing additional other than our current plan to add speech therapy, that the best thing Braden can have right now is two parents who shower him with love, expressing that love with touching and kissing and holding him, and continue to provide our little man with the therapies we currently provide.
For now, we are battling another case of the green - so I am sure this will be a continual environmental challenge the rest of the year. Pray that our medical team finds a solution for him that will keep him healthy for longer periods of time... we could use the rest, you know?
Thanks for your continued support & prayers.
Kodi, Brad, & Braden
Sunday, June 10, 2007
Last weekend Braden got to meet a special friend - baby Jackson. Jackson has a condition called arthrogryposis - his arms and legs have contractures. Jackson is a sweet and precious little baby who thought it was pretty neat to be around a baby bigger than he is. Braden seemed to enjoy little Jackson and shared his blanket while they napped together. The mommies sat them up to enjoy each other, and they seemed pretty enamored with one another. Mom & Dad (Doris & Jonathan) enjoyed a nice evening cook-out with us. It was nice to spend some time with a family in a situation similar to ours, who has a social schedule like us too - you know, we pretty much stay at home:-)
Braden is still working on tooth #5, he is pretty fussy at times because of it. On a good note, he is holding his head more mid-line and trying to pick it up more every day. While it may be coincidental, Uncle Scott & his girlfriend Patty got Braden a salt ionizer lamp for his birthday, which we put up as soon as we got home from his hospital stay, and we think it is part of the reason we have seen such great improvement in Braden's development, but we don't know for sure. We can't wait to see what our little man has in store for us next!
Friday, June 08, 2007
Although Braden was fighting the gooey green monster bug starting this last Friday, we were scheduled Monday for Braden's mediport surgery. His white cell count was pretty high at 25,000 on Friday, but after 3 days of antibiotic shots, by Monday he was "cleared" for surgery, as his counts came back the lowest we have ever seen them, at a mere 8,600!!
The mediport is semi-permanent vein access for shots, IV's, or any time blood needs to be taken. We almost lost Braden a few weeks ago, as the lack of vein access nearly proved fatal for him, so this surgery is one that we really wanted to have done, and had already been discussing with our medical team for some time now. Braden is such a tough 'stick', they couldn't even get access to do the surgery itself! So what is normally a 15 min surgery became an hour, as they took extra special care to ensure there were no problems, and they ended up using the medi-port once it was in to give him fluids in post-op.
Braden gave them a little trouble coming out of anesthesia, but it was a successful day overall. The port sticks up from the skin like a little tumor looking thing, or like he has been working out hard on his pecs on the one side:-) He doesn't seem to mind it, or be bothered much by the incision either... his big fussiness these days are from the fifth tooth that still hasn't broken in. We think that will be the last in this group.
FOR SOME UPLIFTING NEWS... Braden has not had a seizure since we left the hospital from our strep B & pneumonia a few weeks ago, and we have seen some incredible changes and progress in him. He is now turning his head at his own will and even holding it mid-line more, and even trying to lift it up!! He can bear weight on his legs for 15 minutes at a time, and seems to really enjoy that. He is taking fewer naps these days too - probably due mostly to the large decrease in seizure activity. We are just savoring and soaking in every moment with him now, as we see more interaction and "play" (or at least tolerance for it) with him.
We hope to get Braden together with another special baby this weekend named Jackson. If so, we will post pics for you to enjoy. Thanks for checking in on us!
Kodi, Brad, & Braden