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.

Little Superman

Hello everyone!

We are happily 4 days post-op and doing great. Jameson has once again proven that he is stronger than we even imagined. He was able to get off the breathing machine within a few hours of being transferred to intensive care and from there has just gotten better and better. Today, he is really back to himself, only on Tylenol and wanting to move and roll all over the place! Its amazing how quick they can bounce back!

The surgery itself was somewhat complicated. Our surgeon, Dr. Irish, who has worked with Jameson since he was a month old, declared to me upon finishing that this was the most difficult Orchiopexy he had ever done. While the amazement of Jameson's complexities are something to marvel at, it is still hard that things can't seem to just go easy for him. The surgery's goal was to move both undescended testicles from the abdomen into the scrotum. Unfortunately, Dr Irish was only able to work with the right testicle and he had to completely cut off the blood supply in order to stretch it to where it needed to be. The decision was made to not attempt the left one at this time just in case the right doesn't get adequate new blood flow and has to be removed. We will keep our fingers crossed that this won't require more surgery in the future but more than likely it will and we will take it one step at a time. 

Along with little man's surgery he also had an ABR and an MRI. The MRI results we are still waiting on but the ABR we were able to get information on right away. Jameson has about 50% hearing in his left ear and no response in his right ear. We were definitely expecting something like this so it wasn't much of a shock. Now that we finally have these results we can move forward with a hearing aid in his left ear and that should help significantly. Our local early access agency, who provides some of his physical and occupational therapy, will also be providing a hearing teacher for him that will work on signing and communication. It will be challenging to add another weekly appointment but completely worth it. We are excited and grateful to all the help that Jameson receives through local agencies, they are amazing people that really care about special needs children and families. 

I hate to sound like a broken record, but I want to say thank you again to everyone for their continued love and support of our family's journey. The kind words and prayers we received while in the hospital were incredibly uplifting and got us through the tough times. Being able to use this blog as an outlet to communicate what we're going through is extremely helpful and healing....so I thank you all again for the support.  :)

Surgery Updates

Happy Saturday everyone! As I listen to the rain falling outside and little man snores next to me during his morning nap,  I figure no better time than to update everyone on Jameson's recent doctors visits and surgery updates.

After much discussion between different departments and doctors, our medical team has finally decided the best course of action for little man is to do all his procedures in one day. We were getting information back and forth for a few weeks about whether it would be safe for him to be under anesthesia for the amount of time needed to do his surgery, the three hour MRI, and the one hour ABR. The final decision was that it was worth it to try as opposed to having him be under sedation on multiple occasions during the summer. We are happy that they are willing to work with him and give him the best care possible for such a high risk case. We truly appreciate everyones prayers as we prepare for the day on July 2nd. It will be difficult but hopefully the last surgery he will need for quite some time. :)

Saw an amazing new doctor this Friday named Dr. Fred Klingbeil. He is a physiatrist who deals with pediatric rehabilitation medicine. Gave us a lot of great information and advice in regards to getting Jameson to the best specialists and thinking about things for the future. We look forward to adding him to our list of doctors and working with him throughout little man's life.

No other major updates to report right now, we're really just trying to keep our little guy as healthy as possible so that our surgery isn't cancelled. He's been sleeping great these days and hasn't had an ear infection since April!! Thankful for his continued progress in his many therapies and thankful for the love and support of everyone around us.