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
