First and foremost, little man should now be dubbed little rockstar because he has been kicking some post-op butt! No issues at all with the healing of his incisions and he doesn't act like he's been in any pain at all. Its absolutely AMAZING how tough kids are, they are so resilient.
We met with Jameson's ENT, Dr. Young, this week and we're moving forward with the hearing aid in the left ear. We will give it a 6 month trial run and if it doesn't work for him then we'll sit down and talk about our options. Those options include anything from a Cochlear implant to not trying anything at all. We still have a lot of unanswered questions regarding Jameson's brain development that could be affecting the inner ear so still more to come on all of this.
The MRI results came back a couple weeks ago. I'm not going to lie and tell everyone it was all good news because then I would be doing a disservice to the reason I started this blog in the first place. This whole thing was a way to keep people that love him informed and to use this as an outlet to help deal with everything we have going on. To be completely honest, the last couple weeks have been really rough. We found out about some issues with his kidneys that we had never known about before. I don't have a lot of information for everyone about it yet other than that they suspect kidney reflux. We've been referred to a nephrologist and urologist at the University of Iowa so once we get some tests done we'll have a better idea of whether this will mean more surgery or whether we can attempt to treat it other ways. Obviously, more to come on this as well.
Jameson's MRI also showed some issues with the brain that we have very little information on yet. I cannot explain enough how incredibly rare he is and therefore to find doctors that have dealt with these kinds of issues are difficult. We're part of a support group on Facebook for CdLS and I just today got in touch with another mom whose son also has similar brain abnormalities to Jameson. She informed me of a research study of 8 known children thats being done with doctors at Boston Children's Hospital and the Children's National Medical Center in DC. I'm in the process of getting a copy of Jameson's MRI results to these doctors to see if they can get us any more information. We appreciate more than anything everyones continued prayers that we can find the right doctors to properly diagnose and help us treat whatever curve balls we get thrown with our little man. He is so incredibly strong, I sometimes feel like I'm just trying to keep up with him. :)
Also, I just want to end things by pointing out how awesome Jameson has been with physical therapy the last month or two. He is now completely rolling from back to stomach and back again with no assistance. He still needs some help with sitting but he's getting closer and closer! I was nervous that his surgery might stall his progress a little but he seems to have trudged right through.
As I said before, I'll continue to update the blog with whatever information I can. We definitely have another full year of medical adventures coming our way! Thanks for thinking of us.
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