It's the holiday season...

Happy holiday season everyone! I hope the nice weather is making you all as happy as me. I took a long lunch from work today to accompany little man to one of his therapy appointments, and was very pleased for the cloudy day as little man was able to fully enjoy riding around in his stroller with no sun shade. It's the little things in life that make you thankful. :)

Also very happy to report that there's no big news from us since our last few posts. We are scheduled for surgery on January 8th for Jameson to have his bladder reconstruction. Dr Cooper, his urologist, is very confident that he will make it through in no time and with no complications! He is one tough cookie! But other than that, little man has been staying healthy and happy. We started his new seizure medication, keppra, almost 2 weeks ago. It took him a little time to adjust, but he seems to finally be feeling back to his old self.

I'm not sure if I'll post again before Christmas since little man has been doing so well. So until we meet again, have a safe and wonderful holiday season! :)

Thankful

It can be really easy to get into a dark place when you're feeling like the odds are stacked against you. The obvious question, "why me?" can slip into the deep dark crevices of your mind. Being angry about having to watch your child, spouse, parent go through something incredibly difficult. Anger...that's the easy way to deal with it. Perhaps the more difficult way to look at it, is to be thankful. In honor of thanksgiving and having a positive outlook, I'm dedicating this blog post to everything I'm thankful for. 

• I'm thankful for my incredibly selfless parents who've gone above and beyond to help little man and myself when we needed it most. They love him more than anything and care for him as if he were their own. 
• I'm thankful for an amazing group of doctors and therapists that care about Jameson not only as a patient, but as family. They are constantly looking for ways to make his life better. It never ceases to amaze me how much they think about what more they can be doing to help him. 
• I'm thankful for the support I've gotten from a whole lot of people I've never met. Joining online communities of other parents with special needs children was one of the best things I've done since Jameson was born. They are the lifeboat that I climb onto in the midst of the storm. Always compassionate and always there when you just need to yell at the world. 
• And lastly and most importantly, I'm thankful for little man. He is the most amazing soul I will ever know. He is an angel on earth, here to inspire me to be a better person. 

I know everyone has their challenges that they're dealing with both inwardly and outwardly. Sometimes, it doesn't feel like there's much of anything to be thankful for. But I can guarantee you, there is. There is always a silver lining and always reasons to give thanks. :)  

 

Fall updates

This will be just a brief update for everyone on what's been going on with our little man

 There is still a lot of things developing and not yet decided but at least it's a way to give everyone an idea of what's been happening. :-) 

We were at the University of Iowa Children's Hospital on Monday and Tuesday last week for some testing and doctors appointments. On Monday, Jameson had an EEG and a urodynamic study.  The EEG results came back showing that little man is indeed having seizures, but luckily the kind of seizures he's having at this time aren't too bad. Our neurologist gave me a list of some different kinds of anti seizure meds we could try and what their potential side effects could be. I'm going to be doing a lot of research and from there decide what kind of med to try and how long until we start him on it. I don't like putting him on more medication that seems unnecessary but I also don't want things to get worse. Luckily, what hes experiencing right now doesn't seem to have a negative impact on his quality of life. :-)

The other part of our trip was with urology and dealing with little man's bladder and kidney issues. With the test they did last week, he was officially diagnosed with a neurogenic bladder. (I'll dedicate another post to explaining this better as it's complicated but very interesting.)  The biggest problem with his neurogenic bladder is that he isn't fully emptying his bladder and that excess pressure builds up and affects the kidneys. So in the end, the decision was made to move forward with surgery. It was an extremely difficult choice for us to make, but in the long run it is the most realistic thing to do. If we don't get this under control soon, his kidneys will eventually fail and that only leads down the road to dialysis or a kidney transplant. If we can do a bladder reconstruction for him, we can take away the pressure on the kidneys and keep moving in the right direction. More to come on this as well. 

We'll I guess that ended up being longer than I planned but I know people are continually praying and thinking of our little man and we truly appreciate it. Those prayers really do work as he's already been making such amazing progress and will continue to do so as we keep trudging ahead. Thanks everyone! :-)