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.

One tough cookie

 Well, here we are! We've made it past the one year mark and still going strong. If I could imagine what little man is thinking it would be something like..."throw whatever you want at me,  im the toughest little dude you're going to meet and nothing scares me!"  :)

We have gone through A LOT in the last month. Its been an emotional rollercoaster and the ride hasn't finished yet but we're making it through with a good attitude. What else can you do? Obviously, no one wishes anything difficult on their child but you have to make due with the cards that are dealt and stay as positive as you can. So here goes while I try to explain all the information we've gathered recently and where we're headed.

First off, we're in the process of figuring out what is going on with Jameson's spine. This all started when his chiropractor mentioned to us that she noticed one ribcage sticking out slightly more than the other. We then mentioned it to his physical therapist and then to Jameson's pediatrician. After his 12 month check up, we went to get chest xrays and instantly got the results back that our doctor believed Jameson had scoliosis. As you can see from his xray, there is a slight curve in the middle. We were automatically referred to Dr Weinstein at U of Iowa because he was supposed to be the best in the state. On top of the spine issue, you can also see in the xray that Jameson's right diaphragm is elevated into his lungs. This was something we knew about as he was born with it, but now we wondered if it was causing the spine to curve.

So yesterday the 21st, we went and had our meeting with Dr. Weinstein in Iowa City. We were told that he doesn't believe Jameson has scoliosis at this point in time but to check every 6 months-1 year. The news was bittersweet. We are extremely happy that this orthopedic surgeon with many years of experience is saying its not scoliosis but we've also heard a lot of stories from other parents of children with scoli that they were told to "wait and see" what happens only to find a year later that the spinal curve is MUCH worse and more difficult to treat. As of now, we are hopeful that this doctor is right and we have nothing to worry about, but we are still going to consider what his future MRI reads and decide from there whether we need another opinion.

We also saw little man's general surgeon Dr Irish today and are on the way to getting his surgery scheduled. We have a lot of different procedures that need to be done simultaneously so coordinating multiple people is the hardest part. Luckily, we have an awesome team of doctors that are adamant Jameson's gets the best care possible. He gets to have the best pediatric surgeon, anesthesiologist, and otolaryngologist in Des Moines!!!   The main part of his surgery will be to find his testicles (which are somewhere in the abdomen) and attach them where they're supposed to be. On top of that he needs a full brain/body MRI and a sedated hearing test. He will also be getting a new feeding tube installed while under. So lots of things to accomplish but luckily we have a great team looking out for him and helping us along the way.

I know this is tons of information, maybe even more than most people want to read but its our lives. We live, breath, eat and sleep medical research 24/7. It seems to be what comes with the territory of having a child with special needs and we're ok with that. As long as we continue to get the best information and help for little man thats all that matters. Thank for keeping him in your prayers and we'll keep everyone updated as we go along!!