Monday, July 26, 2010

Life back to normal!

Doug and I are happy to report that life is finally getting back to normal. Joshua is doing excellent and his shunt is functioning as it should. We had a recent checkup with his neurosurgeon last week and he was extremely pleased with Joshua's progress.

Now, we are learning to live life as a family of four which can be quite busy at times. Abby loves her little brother and is always so eager to help out when she can. She doesn't seem to understand why Joshua doesn't constantly have a pacifier in his mouth like she does (a habit that has been hard to break) and as a result is often seen trying to shove one in. We are so happy that she has adjusted so well to having a baby brother.

Thursday, July 15, 2010

Well, Doug and I have begun our cathing journey today and it is NOT easy. So far I have not been successful in my attempts but I say this with the hopes that another post one week (or maybe two) from now will read differently. In looking back I'll be able to say "well that wasn't so bad" and realize that when other challenges come along we will be able to overcome them as well. THIS TOO SHALL PASS!

Friday, July 9, 2010

First Spina Bifida Clinic visit

My mom and I took Joshua to his first Spina Bifida clinic appointment yesterday. Doug wanted to be there but we thought it was important for him to work considering he had been off for three weeks while Joshua was undergoing his two surgeries and back for only two days. It was a LONG day so I was lucky to have my mom there to help.

The Spina Bifida Clinic is the greatest thing for parents of children with Spina Bifida. A person with Spina Bifida has a lifelong relationship with many specialists including a neurologist, orthopedic surgeon, physical therapist, urologist, social worker, and dietician. Imagine having to make appts separately with each one of these specialists about every three months. Life would be crazy (or crazier). The clinic is great because you have one appt (that lasts all day) and get to see all these specialists back to back.

Well, yesterday we met with those specialists and got an earful of great information and an idea of how Joshua's next yr will be. The new updates are as follows: 1) Joshua's shunt seems to be working well but the neurosurgeon is going to check again in two weeks, 2) Joshua's feet ARE NOT clubbed and do not need to be casted. Ortho thinks they should resolve on their own if and when his calf muscle develops, 3) Joshua WILL walk! (with some sort of leg brace), 4) We will begin cathing him next week (4 times per day). This is a preventative measure to ensure that he doesn't damage his bladder or kidneys, 5) We will also give him a medication 3 times per day to protect his bladder, and 6) He will begin physical therapy soon once per month at first and then at 6 mos old it will be about 2 times per week to learn important skills (sitting up, rolling over, crawling).

All and all this was a great appt and a great chance to access how Joshua is doing. He seems to be doing much better than we expected and we are so thankful for that.

Sunday, July 4, 2010

Joshua's shunt experience

Doug and I have had a busy and traumatizing last few days with Joshua. For the sake of the blog I should try to avoid sounding too negative, however I'd really be lying if I said that there was anything about the last few days that was easy. It has been, by far, the hardest part of our entire experience, to date, with our new son.

His surgery went really well according to the neurosurgeon but his recovery has been a struggle since he has been in a significant amount of pain. We were expecting to take him home on Friday but instead kept him at the hospital until Saturday. This turned out to be a smart decision for us as Doug and I spent the entire time at his bedside doing everything we could think of to make him feel better. Having him home now is nice, but we are still dealing with a very uncomfortable little boy. We are doing our best by giving him Tylenol around the clock and trying to comfort him in every way possible but it seems that time will be the only solution.

These are photos of Joshua immediately following surgery...

...and a photo of his shunt. You can still see the tubing under his skin, however as he gets older and gets more hair this should become less visible.