It's the little things

One of the most difficult things to overcome in life is comparing yourself to others. I find myself often comparing Jameson to other kids. Typical kids. Special needs kids. Kids with epilepsy, etc. Its like I'm always trying to find where he fits in some way or another. Over time, I've realized he doesn't really fit anywhere. He's like a special sauce; with some ingredients you recognize and some that are a secret to only his maker up in heaven.


So when he makes little accomplishments in life, they are extra special to me. It can take such a long period of time for him to do things but once he does, they are so incredibly amazing to watch. One example that really sticks out in my mind is his smile and laugh. I don't think little man purposely smiled until well after his 1st birthday. It took even longer to get him to laugh, and when he first started doing these things it would be a rare occurrence. I can happily say that now at almost 3 years old, Jameson smiles and laughs every single day. He talks all day long! (Well, his version of talking which is more like a bellow) :-)   He watches you smile and smiles back! If you had told me this 2 1/2 years ago I would've thought, wow that's all he's doing at 3 years old? But experiencing it completely changes your outlook.


Another thing that has made me a proud mom lately is his working towards sitting. Its been coming along very slowly over the years with weekly physical therapy, but he wants to do it and is trying. I couldn't be more grateful to the fact that he always tries so hard to do these things that his body just doesn't allow him to do very easily. He could just stop trying after 3 years of not getting it, but he wants to hold his head up and sit. He wants to move his legs and hopefully walk someday. He's an amazing little man!


To say I'm proud would probably be the understatement of the year. My heart is full of love and awe for everything he does and every little thing he accomplishes. It's easy for all of us to compare ourselves to others because its just a part of our human nature. Just make sure you take that extra time to appreciate the small things that make each of us special.

Transitions

Hi everyone!


I apologize for it being over a month since my last blog post! I try my best to update little things on Facebook and post lots of pictures but I know many people are interested in Jameson's overall health and what's coming up for him. I believe in my last blog update, I mentioned the tethered cord surgery and how that is on the list of possible things to do coming up this year. After much thought and discussion, we've decided to make a trip to the Mayo Clinic in Rochester for an overall health assessment and second opinion on the tethered cord surgery. Currently, Jameson has about 10 different specialists that he sees along with his regular doctors. The plan is to stay in Rochester for a week and see all the different departments along with whatever tests they need to make decisions on what the best treatments are. After that stay, we will have a meeting and discuss if there is anything else we should be doing or any changes to his current medications/therapies. We are very excited to get into the Mayo system not only for the amazing team of doctors they have there but for all the clinical trials and research studies they have at their disposal. It's something I've been thinking about doing for a while and the timing just seemed right.


Speaking of transitions, we had a big meeting a couple weeks ago with the school system therapists and case managers regarding Jameson starting preschool in the fall. It seems so crazy that this little peanut will actually be ready to go to a school 4 days a week but its here and we're finally wrapping our minds around the idea. The program is only for 2 1/2 hours a day, but its still very scary to us! This little man hasn't been out of our sight since he was born, so the thought of trusting someone else enough to care for him the way we do is difficult but needed. I have heard from many other special needs moms that the growth they've seen in their kids once they've gone to school and interacted with others is just amazing. We're very excited to see what this new chapter of Jameson's life will do for his development and overall happiness.


As always, thanks for stopping by and checking to see the latest on everything little man. We appreciate all the love and support that our family has received in these last 2 1/2 years and continues to receive daily. Love to you all!

A busy month

Welcome back and thanks for checking in! The fast-moving train that is Jameson's world of doctors and appointments has continued to move full steam ahead through the beginning of 2016. We enjoyed a little break over the holidays and now we're back to the craziness!


Through the first 4 weeks of the year Jameson has seen nephrology, endocrinology, neurology and neurosurgery. He will be seeing orthopedics and ENT in a couple weeks! It sure is busy but we're so used to it by now that we wouldn't know any different. :-) Little man had a bunch of lab work done to check his kidney function and hormones. His kidney levels came back slightly elevated from a few months ago, but his nephrologist was still very happy with his progress and overall health. His kidney disease will always be there but its something we can always work on managing. It is by no means a reason to be depressed or down, its only another example of how incredibly resilient he is.




Along with the kidney levels, we also found that Jameson has an underactive thyroid that we are now treating with medicine. Since we started this new thyroid medicine, his sleep has gotten much better than it was a couple months ago. It must be his body telling us he's happy about the new treatments!




Last but not least, we had quite a roller coaster of a trip to Minnesota last week. We were able to check many things off of little man's bucket list; riding a carousel, petting a stingray and visiting an aquarium! We also got news from his neurosurgeon that he thinks Jameson needs to have surgery on his spine this year. At first I was really taken aback. I wasn't prepared to hear that and I didn't know how to feel about it. But after taking a few days to let it settle in and talking to his doctors, it became apparent that surgery was the right thing to do.


The surgery they want to do is called a tethered spinal cord release. They believe that part of Jameson's spinal cord is attached to tissue at the bottom on the canal and therefore being pulled tight and causing nerve damage. Typically, an MRI will show this and that's how they diagnose the problem and decide on surgery. But in Jameson's case, his MRI doesn't show a tethered spinal cord. Instead he has all the classic symptoms, like weakness in his legs, issues with his bladder, constipation and scoliosis. The doctor wants to do the surgery to prevent any future damage that could happen and possibly cause chronic back and leg pain. If given the choice between a surgery and hospital stay versus irreversible damage that causes chronic pain, I don't think you have any other decision. When it comes to your child you will do everything you can to make them comfortable and give them the best quality of life possible.




So as always, we have a busy few months ahead of us! Jameson has been doing so well the last 6 months, its pretty amazing to see him learning new things every day. If I can be thankful to God for one thing above all, its for giving little man his sense of comfort in almost everything. He is pleased every single day with just being around his family and playing with his toys. It makes everything worth it when you see happiness in his eyes because he knows how loved he is. :-)