Jet had his 3rd visit to the Spina Bifida clinic yesterday. We left breathing another sigh of relief that it was positive (YAY) as most of our visits have been since that fateful and terrifying first visit to the perinatologist. And we offered a prayer of thanks that once again our little boy is defying the odds and making us wonder what we were so worried about. Now please don't misunderstand - our little boy is not "fixed" as I'm beginning to see is the common misconception. Yes he is doing AMAZING. But while he is wonderfully made and perfect in our eyes, and while his back closure and shunt surgeries were successful in "fixing" the immediate threats...Spina Bifida is not a broken bone or illness that can be treated and then just disappear. It is life long. It is always there. It is in the little things we take for granted and the big things we hope to see him do one day. So when people ask me how he's doing - I usually say GREAT. Because he IS doing great. When looking at the broad spectrum of challenges this condition can present - Jet is definitely one of the lucky ones in my book. He is strong. He has great potential. He has adjusted well to his shunt and has not had too many hospital visits. We are blessed. But to help explain what I'm talking about I'll try and give a breakdown of our appointment (and to our SB buddies this will be like reading nursery rhymes you've heard this stuff so many times yourselves.)
Jet's diagnosis is really divided into 4 big "B"s: Brain, Back, Bowls and Bladder. Or at least that's how it looks to me.
Brain: Jet's shunt is working fabulous and the doctor had no concerns. Yay! Doing great!
Back: Spina bifida means that Jet's "back" or spinal cord had a hole in it when he was born. So obviously that can pose some problems as far as muscle development, coordination, and strength. Jet so far has surprised doctors with his muscle tone and strength. With mild delays in reaching his milestones there are no great causes for concern yet and they still say Jet should walk fine.
There was some "flip flopping" among the different specialists as to when or if Jet should be fitted for AFO's (braces for his ankles that would fit inside his shoes). We were first told we would go ahead and fit him for them now so as to aid him in standing up and pulling to stand - as his ankles to tend to roll and give out when he stands now). This would give him confidence and keep the muscles from loosing too much by wobbling around. Makes sense right? THEN a second doctor came in - disagreed- and told us we should wait. That putting him in AFO's now could hinder potential strengthening and learning to develop those necessary muscles. He said Jet is still very young and we don't know what he can do yet - to give him support when he may not need it is not a good idea and we should wait to see what he can do - give it 4-6 months. Then if he still has trouble we'll get him some support. Okay - That makes sense too. AHH! I felt very confused. I wanted to feel confident in our decision but hearing 2 different but logical ways of thinking I ended up feeling "flip-floppy" myself. We ended up going with the 2nd opinion - waiting till Jet's older and letting him develop and seeing what he can do. But the "flip-flop" was kind of a stress to me. I'm so afraid of not giving Jet what he needs. Being the advocate for his health that I want to and should be. But I'm just continuing to trust Jet's Highest Advocate for help. :)
Bowels and Bladder: The least delicate of the "B"s but the most prominent in our daily life - Jet has both neurogenic bladder and bowels. This means these muscles are very weak and perhaps under-developed. Bladder control will probably be difficult but we aren't really "there yet." Weak bowels on the other hand means a horrible cycle of constipation and diarrhea (see...not delicate) that we have already been treating with his diet - but are now looking at some other options (suppositories and/or stool softeners) for help. Needless to say it's no picnic for Jet. And one of the "publicly unseen" difficulties of SB, but something Jet will struggle with and always have to work with. Possible medications or surgeries will follow...
But to the world....
He's the adorable, healthy, smiling boy that is the very picture of perfection. :)