We kind of had our first "regular", dare I say boring for us? week. We worked all the days we were supposed to, the sitter came every day she was supposed to, and we didn't have to go to the hospital. We went to therapy this week, had home nursing come, and seen our pulmanologist. Our visit with the pulminologist went well, as we got to address that Braden is still not handling his secretions well. Dr Thomas suggests we do a saliva study (similar to a swallow study) to see where they are going... are they going down the esophagus or ending up in the lungs? If we are seeing any end up in the lungs, then we will move ahead on having botox (no fair). They will inject two of Braden's salivary glands, which essentially paralyzes them for about 3 months, and has no side affects like the medication we are on. If we decide to do this, we will do it when we are hospitalized to start the ketogenic diet.
Depending on how we do on Kepra, the nuero will want us to arrange for a stay in Houston, so Braden can start the ketogenic diet, and we can have the other procedure done while we are there. His seizures are slowly decreasing from 100 a day (still better than the 200 a day we had early on!!)... down to less than 50 or 60 a day now. Since we were having less than 10 a day on topimax, we are hoping our new "potion" of meds will get us to that same level.
Braden is slowly working back up to his physical development, where we were before the extended hospital stay - we are almost there. He is really good at tracking faces, but he still can't hold his head midline on his own, he can't hold it up for extended periods, and he still has not started smiling again since the seizures came on. We were fitted for little hand braces to wear a few hours a day, to help him open up his hands more, and help him not use his stress-response of turning his hands and arms inward when he is upset.
On a good note - he is more relaxed overall now and sleeps with his hands open most days. Our boy is ALMOST 16 pounds, and just blew through his 3 - 6 month stuff without even getting to wear some of it. He is also now 24 inches long. BIG BOY.
We will post an update when we know if we will be sent to Houston to check in, or if we will just be going for a check-up. Thanks for checking in on us,
Kodi, Brad, and Braden
1 comment:
Oh what a beautiful baby! I can't believe how he is growing. Looks like good news is on the horizon. We are all praying for that.
Love and miss you lots!
Gram
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