You can't control everything

February 28th, 2015 was not a good day. It's seems slightly ironic that on the day that is nationally recognized as "Rare Disease Awareness Day", Jameson's brain decided to have the worst seizure it's ever had. After almost 2 years of life, that was the day everything changed. Witnessing your child have a seizure and stop breathing in front of you is something I can't really describe and would never wish upon anyone. To say that I'm incredibly grateful to the paramedics, emergency room personnel and everyone that prayed for him that day is an understatement. It truly means more than you all know. 

Trying to go back to everyday life after something like that is difficult, as you can imagine. But as the hours turned to days and now weeks, I've realized you have no control over it. You work with doctors and try to find the best medications and treatments you can....and the rest you leave to God. 

I'm happy to say that Jameson is doing amazingly well, considering everything he's been through in the last few months. This weekend, he laid on his tummy and lifted his head for almost 30 seconds! It was one of the most beautiful things I've ever seen; the pride on his face for being able to hold it that long. We've been accepted by a specialized epilepsy group up in MN, so Jameson will be seeing a new group of doctors that work just with complex seizure cases. We're incredibly excited to get a new perspective and see some of the best doctors in the country to help him. 

As always, I want to extend my heartfelt gratitude for everyone that continues to pray and think of him. I have no doubt in my mind that he was put on this earth to touch each and every one of us. I feel very lucky that our family was chosen to care for such a beautiful soul. :-)

Living in the fast lane

Where does the time go? Sometimes I feel like I'm in a whirlwind and then POOF! It's almost March! Hard to believe it's been almost 2 months since little man's surgery and only 6 weeks from our much anticipated trip to the Children’s Hospital of Philadelphia. I feel like just yesterday we were meeting with our geneticist and getting the CdLS diagnosis...now here we are, so much more knowledgeable and better equipped to handle whatever life throws at us!

I'm beyond happy to report that Jameson has been doing a lot better the last couple weeks. Other than a little virus, he has been sleeping better and is back OFF the pain medication. Yay! He is still sleeping in mom's bed instead of his crib...but eh, I figure you take what you can get. I'm also about 99% sure that he really just enjoys cuddling up next to mom or grandma if she's staying with him. Who can be upset at that? ;-)

We have a big week coming up at the University of Iowa. Little man is seeing his urologist, neurologist and his neurosurgeon. He will also be having another ultrasound to check on his kidneys since surgery, an EEG to monitor his seizures and another MRI scan to check the extra fluid in his brain. It will be busy but should be pretty stress free. I've stretched it out over two days this time so hopefully we don't feel rushed. I will give updates on everything once we get them.

Thanks everyone for stopping by, hope you're staying warm and out from under the snow!

Recovery

Hi all, thanks for checking in! I apologize it's been a month since I last blogged! :-/

As you all know, it's been a doozy of a month for us with little man. He had his vesicostomy surgery along with a second orchiopexy done on January 8th at the University of Iowa Children's Hospital with our wonderful urologist, Dr Cooper. He was in the PICU a few days and then we were able to come home. He did very well during the procedure, as always, but this recovery has been by far the toughest on him of the three surgeries he's had in his life. I don't know if its because he's getting older and taking longer to heal...or if this surgery was just so much more intense, but little man has had a hard time getting back to himself. First, we had to deal with the immediate pain of his incisions...then it was getting his bladder spasms under control...then once that was under control he got an infection around his vesicostomy that we're still working on clearing up....and now, he's decided he doesn't want to sleep through the night anymore. I think it's probably because he's just so out of whack; it takes time to get back to a normal schedule. In the meantime, mom and grandma are very tired from splitting shifts! Haha :)

We will be going back to the University of Iowa in a couple weeks so that little man can get another brain MRI and see his neurologist and neurosurgeon. The point of this is to check the levels in his brain again to make sure the cerebrospinal fluid isn't accumulating too quickly. We are also seeing his orthopedics doctor again to talk about his spine. I know it seems like a lot, but you just do what you have to do. Jameson is a tough little soldier that has been through a lot. I'm hopeful that as we can get a lot of his medical issues under control, we will see less and less of his many doctors.

I wish I had more happy news to share with everyone, but unfortunately it's not always the reality of the current state of things. I know everyone is praying and rooting for him so I'm always striving to make sure I keep you all updated. Other than the sleeping and frustration from that, little man is otherwise doing very well. He is playing with toys again and we're working on getting him back into his weekly routine of therapy and appointments. He is so incredibly loved and supported by you all and we so appreciate it!!!