Tuesday, October 26, 2010

17...Only Comes Once in a Lifetime...

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!

10 comments:

Heather Weir said...

I love love love your pictures. I wish I had your eye for the camera shot!

Congrats on a good clinic day! and exciting news about a good bladder.

did you hold off late in starting solids with Jet. I am cause I'm afraid of the poop problem. I hope you can get a good ruetine going.

and as always Jet is so cute Love that shirt he's wearing

Stephanie said...

Dear Joanna-can you pulleeeeze tell me where Jet got that adorable Elmo shirt? I MUST have one for Nate-he is in LOVE with that furry red monster! :) Thanks for keeping us updated-as always it sounds like the J man is doing wonderfully! And on the speech note-Nate was in the same boat around that time too, and he started speech therapy and TOOK OFF. It's been non-stop ever since. Oh, and FISH OIL. Seriously, it works!!! HUGS!!!

Leigh and Andy said...

our boys are becoming young men...sniff sniff. :) Jet as always, is so stinkin adorable!! I just love him and all of his great clinic news!!! Keep it up!!

JourneyWithTheCrosiers said...

LOVE these pictures! Such a cute Elmo shirt. Paisley loved Elmo, but I had a terrible time finding a cute shirt that I would let her wear out of the house!

Great Jet medical update as well. Lots of unknowns...hate that part about SB. I hated that from the second we heard the words the first time. I am an answer craver I guess! I am scared of unknowns and I'm a serious planner (all teachers are!). Praying for clear choices for you and Jet's doctors to make.

Sweet post...c'mon Beckett grow up a little so you can do all the fun things Jet is!

Colleen said...

Gorgeous! I clearly remember 17 months with Nate because that's when he finally started crawling!

As for speech, I can tell you Georgia (15 months next week) is only saying a few more words ... ball, kitty, more, milk. Since Jet is a boy and only 2 months older, I would nt be at all concerned, BUT I am allll about the therapies. So I would go ahead and get an assessment and see if he even qualifies. I personally think lots of kids could benefit from a little early intervention with speech. Nate never had speech in EI, but he actually qualified when he went to school because they wanted to work on him answering questions better, and I have noticed a very nice improvement with his conversation skills. Why not?

Yeah, I definitely wouldn't go with AFOs at this point. We did the same thing with bracing--we tried the same little high tops for awhile. Jet is really doing a whole lot better than Nate was at that age though. Finally when he wasn't progressing we got the SMOs, and the very next day he pulled up and cruised for the first time. It was just that little extra bit of stability and confidence he needed. I wish we had done it sooner because the SMOs are so not a big deal. But hindsight is 20/20, and it's so hard to know what to do in the moment. I don't know what you should do either, but I wouldn't hesitate too long on the SMOs. He might only need them a few months to kick start him, and then he could leave them behind. He's doing SO good!

Micki said...

Thanks for the update. So glad to hear so much is going well!

Ask your PT if a SLP can evaluate Jet. It sounds like he's fine, but your county/state early intervention people can come out and evaluate very easily and it's free-no script needed from the doctor! When Ben was getting speech services and they had other concerns, it was very easy for his speech therapist (SLP) to get others to come evaluate.

I'd listen to your PT. She probably knows more than anyone. That's what I found with Macy's when she was getting therapy. Kate's was another story, but we won't talk about her.

Just a note that foods with soluble fiber (cheerios/beans) don't really move things along as well as roughage/insoluble fiber. Soluble fiber's job is to pick up stuff on the way down and get them out of the body (like cholesterol. It's the insoluble that keeps things moving.

Such a cutie. Hope we can see you all at Christmas.

Jennifer said...

Cute pictures! I had the same dilemma with afo's with Samantha's orthopedist and PT. Sammy is 2 now. I do both, some days i put her afo's on and some days i don't. Hers are hinged. I do let her wear them to preschool, I have noticed she stands up straighter and walks quicker with her afo's on, i guess it is just that added support, she has a little more confidence. Anyhoo, good luck with deciding.

krousehouse said...

Such a precious little boy and what a great clinic visit. He is beautiful, and I too love his shirt. But he always looks so dapper!

Dill Family said...

Adorable in ELMO!! So glad things are going so well!

Jill said...

Such a great update!!

I had the exact same speech worries with my Cordelia. No SB there, but I hovered on the verge of going for speech therapy for her when she was 18mos, then 21mos, then 24mos... She's now 2.5yo and she's talking in sentences. Just took her longer to get going for some reason. Cracks me up with the stuff that comes out of that little mouth, I tell ya. So, I guess I wouldn't worry too much yet. If the professionals want to refer him, go ahead and take it. No harm there. But if they're relaxed, you can be too.

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