Sorry for the Tim McGraw reference (for those of you who are confused it's just a song I hear in my head every time someone says "17") but - my little boy is 17 months today!
Seventeen magazine should be so lucky for him to grace their cover. ;)
I suppose this is as good a time as any for a quick "Jet Update" seeing as we did have SB clinic this month. Lemme break it down for ya:
Urology: Bladder ultrasound results were good! No change really - no reflux - no problems other than the neurogenic bladder part we already knew about. In fact - we were a little surprised when the urologist starting talking about how his bladder actually as a good "holding" capacity even with it's low pressure hold. This means even though his bladder is weak and empties at the slightest pressure - Jet might be a candidate later in life for a surgery to help tighten that muscle that holds/releases the urine so he can "hold it in" and learn to empty his bladder on his own one day! We have NEVER been told that this was even possible - we were pretty much told early on that cathing would be it when it came time to get out of diapers. So hearing this good news was a welcome surprise. Now of course bladder control will depend on his ability to "feel" when his bladder is full - that's why we have to wait and see when he's older and can communicate with us to tell if the surgery is a good option. But the possibility is still very uplifting. Something to DEFINITELY keep praying for!
Rehab: Bowels are still a stuggle for us - keeping Jet regular is not easy. He is very up and down and hard to predict what's coming (no pun intended) so we've been experimenting with suppositories and Miralax (which has helped some - but I think gives him gas/tummy aches) and fiber-rich foods like oatmeal, beans, whole grains, plums and pears. He was even on Activia yogurt - till he got burned out on that. You can only eat the same thing every day for so long - I understand, baby. But unless we can keep things moving and get him on some sort of consistent program...I'm afraid surgery is best option in the future. We don't like to think about that right now. But we are keeping our expectations real and in the end - it's all about what's best for Jet. So again...lots of prayers.
On another "rehab" subject - he asked about Jet's language/speech progress and right now Jet is still in the "mama, dada" babble and nonsense stage. He can respond to directions and knows what things are (ball, toy, book, drink, etc) but isn't interested in trying to say them yet. We know kids are all SO different on this so we're not too worried yet. But he mentioned if we do get concerned or his PT recommends Speech - he can write us a script for it. Of course we welcome any advice/wisdom any of YOU have on the subject. :) What do you think? Should we be worried?
Neuro: Shunt is GOOD! We're coming up on the 1 year anniversary of his shunt placement and we've had no problems/infections/malfunctions! Praise God! We are planning a celebration and ceremonial "naming" of the shunt (thanks for the idea Donovan :)) in honor of it's success. Hey - this is a big victory and blessing - we're SO thankful.
Ortho: Still holding off on any bracing as the the SMO/AFO debate continues. Right now I am crawling, standing, cruising, climbing and walking holding onto hands or a toy. The docs at clinic disagree - one says "AFO's now to build confidence toward independent steps" another says "AFO's will inhibit/weaken him and possibly prevent him from doing what he might do on his own." Being that Jet is terrified of these people he doesn't show them at all what he can do. So they are all sort of "guessing" they say. Great. Now our PT says "absolutely NOT! No AFO's - if anything SMO's but she thinks his high-top shoes and arch support shoe inserts may be all he needs." So...we are waiting and watching. If Jet stops progressing or starts falling or showing signs of weakness/frustration we will proceed with asking for SMO's. We don't want to order unnecessary bracing - but we won't hesitate if that is what he needs. So...waiting. :)
Well that's a rap! We were pleased with our clinic day and are very, VERY pleased with how Jet is doing. He is such a sweet, funny, silly, smart (are we biased?) boy and we love him so much. We cannot believe he's already 17 months old! SO close to a year and a half! Time flies...
Happy 17 months little man!
