Friday, July 21, 2006
Sweet Pictures, Disturbing News
I wanted to share some sweet photos... Braden started tracking objects, so we immediately went out to buy a little activity gym to stimulate his interests, and it seems he prefers it more for napping - isn't that just the way it goes? Braden loves napping with Mommy & Daddy in the rare occasions we get to snooze with him - this one is sweet, Brad actually fell asleep with his feet on the bassinet with his legs off the bed, hanging with Baby B in the bed before putting him in the bassinet.
This week brings disturbing news, Braden started having seizures. At first we weren't sure, so we started recording them on video, and all his doctors confirmed that they are indeed infantile spasms or seizures. They sent us to get another EEG, and it confirmed that he is having seizure episodes during sleep and awake. These are generalized seizures, the kind that can cause further brain damage. Our nuerologist decided it would be best for us to take a very aggressive approach to attempt to stop the seizures. Today mommy & daddy will be trained to give Braden daily injections in his leg. He will be getting a steriod they call ACTH. He will be gaining a lot of weight while on the steroid, could become irritable (again), could get a rash or acne, could get bronzing of the skin, and we have to monitor his blood pressure, temperature, and glucose levels. They tell us this approach should stop the seizures within about 7 days, in a normal scenario, but will stay on the steroid one month from his last episode. Then for six months after the injections are done, he will be able to resume immunizations. Because the steroids will break down his immune system, he will have to be cared for at home, and not a daycare.
After 2 1/2 weeks of training the lady who was supposed to take him, the day before I returned to work, she decided she just was not comfortable taking care of him. Luckily, my friend Susanna offered to take him until the end of August, and after 3 feedings she was off to the races. She has been such a blessing, as she was with me the day we were going from doctor to doctor trying to figure out what was going on with Braden. I truly have leaned on her, and she was there to cry with me when the doctors gave us a prognosis. So, what does this mean for us now?
The doc says Braden will probably eventually develop another kind of seizure once these have subsided, so we are looking at a lifetime of medication to keep them under control. She also said that possible (not probable) outcomes down the road are a Cerebral Palsy diagnosis, mental retardation, and he may never learn to walk. Obviously we are devestated, but trying to keep things in perspective... we will still be praying for a miracle, and counting our blessings that this situation does not usually have a fatal outcome.
Please continue to keep us in your prayers during this difficult time, as we will try our best to remain positive and keep on the side of hope. Thanks to everyone who continues to keep us lifted in prayer, we could not make it through all this without you.
Kodi, Brad, & Baby B