Dog days of Summer

Happy Friday all! I'm writing a quick blog post on my lunch hour while I have a little time.  Here's some little man updates for everyone:

Jameson has been fitted for his hearing aid, we should be getting it in a couple weeks. We also meet with his new hearing teacher next Thursday.  She'll be working with him on ways to help him communicate and tell us what he wants/likes/etc. It will be a fun process letting him slowly learn how to express himself,  I'll make sure to take a video of the first time he gets his hearing aid on.  :) 

I've now sent little man's MRI scans to doctors in Philadelphia and Seattle that are working with us on hopefully a diagnosis. We met with neurosurgery this week and thankfully he agreed to no surgery for the time being. The main issue is that little man's brain has more spinal fluid within and around it than what should be there.  How they resolve this is to place a shunt that drains the fluid from the brain down into the abdomen where it's re-absorbed into the body. The question remains, is the excess fluid in his brain doing any harm or is it just there? We'll be getting another MRI in 6 months to see if the fluid is increasing or staying the same, and whether we can continue to simply monitor it. Either way, when a doctor says "no surgery", you say thank God and keep hoping for the same!  

By the way, little man is sooooo close to sitting on his own. The head control is getting much better. He is sleeping quite consistently now and we're very close to weaning him off his sleep medication! I'm researching a lot about blended diets and how amazingly kiddos can progress once they've started getting those natural foods like fruit, veggies, protein, etc. I'm excited to get started and see where we go from here!! 

Thanks everyone for stopping by and checking in on little man's progress, we'll keep you all updated as we continue our medical adventures!  :)

I still would have chosen you...

I Still Would Have Chosen You

 "If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... 

 If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

 If He had told me, "This soul may make your heart bleed," I still would have chosen you...

 If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

 If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you...

  If He had told me "This soul may one day make you witness overbearing suffering,"I still would have chosen you...

 If He had told me, "All that you know to be normal would drastically change," I still would have chosen you...

  Of course, even though I would have chosen you, I know it was God who chose me for you."

More adventure is on the horizon

Wanted to give everyone some quick updates on Jameson and whats been going on.

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.