The Update Finish

Beginning at Home,

Welcome back for a bit more of this amazing journey called our life. I have so many issues that being a parent to a special needs child brings with it, that are large parts of this story. However I feel like if I just start on these topics, a large part of our story will be missing. So here we go with the rest of the story that bring us to where we are now.

Coming home was the best thing in the world for our family. We were filled with relief and scared to be so far away from out team of doctors. Coming home brought new feelings of fear to Roy and me. I truly think the hardest part about having a child with Hydro is that fact that at anytime they could need a Shunt revision. Some kids go there whole life and never need another, others have many surgeries and will continue to need them. Home life was filled with twice a week follow-ups with our PCP, just to make sure Jaden was on track. One day about a week after we had been home, I came home from work and noticed Jaden’s Shunt looked swollen on the outside of his head. I knew this was Spinal Fluid making it swell on the outside and feared the Shunt was not working to let the fluid drain. Of course my first call was to your PCP to seek advice on how to hand it. We took Jaden in and Roy and I decided to take Jaden to The Children’s Hospital again for a checkup with our Neurosurgeon. We drove straight through the night, mind you over snow covered passes at 12,000 foot above sea level.  I had to know the answers to what was happening with Jaden. While I trust our PCP, I feel like I can never let my guard down with Hydro, people who do, sometimes have tragic prices to pay. So I was relieved to hear from the surgeon that, while yes it was not the picture of perfectness he had hoped, he felt ok with starting Jaden on an antibiotic and letting us come home.

Ah home again, what a trip. Exhausting, yet oddly calming. Once home and some peace of mind that healing takes time; we started physical therapy for Jaden. We are so blessed to have a service that provides us with weekly visits with both PT and OT for Jaden. Now that Jaden had undergone surgery, it was time to get him moving again. I feel so sheepishly, not even seeing the longevity of things with Jaden. Even just the slightest movement from his arm gives me hope his brain can make the connections it needs to build a new path.

We went back to Denver in mid-November for a checkup with Neurosurgery and an MRI.  At this time is when we began to learn more about the stroke Jaden suffered at birth. We learned babies who have strokes do so in the 72 hours before or after delivery. There are no warning signs and we were under every impression we had left the hospital in April with a healthy child. We stared seeing a pediatric neurologist, who is an infant stroke researcher. She informed us that by the condition of Jaden’s brain and MRI, he had suffered a mild stroke at birth. This was a comfort to us because it really drove home that there was nothing we could have done differently to prevent his stroke. Like any parent I felt responsible for what had happened to Jaden. Hearing her say there was nothing I could have done was truly a weight lifted off my shoulders, took some of the “what if’s” out of the satiation as parents for us both. So with a good checkup under his belt, we headed home with a future care plan in hand; we overjoyed to be taking our family back home. I think at this point we had forgotten what it was like not to be caught-up in this medical reality.  

It was nice to see Jaden do better during the month of December 2010. For the first time in months I felt like we were able to relax and enjoy our family, while still filled with doctors and visits and the complications of coordinating care- peaceful as a family again.  Working hard on researching therapy for him, working on such little things as the way we hold and feed him because it helps work on therapy. I find it hard not to think about how his movements are related to his therapy. Therapy is hard work, which is made even harder as Jaden gets bigger and can protest to different techniques. We have found we have to become really inventive to keep him involved and make it fun while helping him regain use of his right side. As of January, we have found out Jaden has some loss of vision in his right eye. We are seeing an eye therapist to aid him in learning how to make his vision better. Finding out Jaden has some vision impairment been very hard and upsetting to me. However, being positive and knowing he will get better will pay off.

So now that you are up to date on the Jaden adventure, I have a whole list of branch off topics to share with you. Everything from people who have touched our lives during this time to the reality people like us face every day, finical challenges.

Feel free to comment and I look forward to writing again soon.

Love and Health,

Jaden’s Mommy

Jaden @ 8 months!