This is our story....The story of our journey as a family of four

Tuesday, June 29, 2010

SB clinic- take 1

There we were on Wednesday the 21st for E's first Spina Bifida clinic.... we got there before 8 (our apt was at 8:30) and we were the first ones there, so we sat with our bub in the dark waiting room.  Anxious, maybe even a a smidge nervous for what was to come.  Next came in a girl, I would say about a feshman in HS...walking with no crutches, no braces talking about basketball camp...hmmm must be sacral I thought to myself.  Next a boy with nothing but a huge smile on his face and friendly hello to everyone in the room in a wheel chair, and his mama carried a full body brace- Then this sweet little boy came strolling in with with AFO's playing his DS as he walked......that is when I sat there and really realized just exactly how diverse Spina Bifida is so unique to each individual...just like DNA, everyone has their own little blue print- but I noticed one common denominator...they were all just happy kiddos, doing and talking about everyday kiddo things.


So we get into our room and we sat there.....First up, Urology...probably the visit I was most nervous about, but then came in Dr. Williot (insert mental pic of Patch Adams, thanks cherie lol).  Great Dr, great personality and it was a good visit.  He examined him and talked about the next step for E, which is another renal ultrasound and a Urodynamics study, to test the bladder to see just exactly what E has been given in this area.  This is scheduled for August 3rd, and I will write more on it as it approaches.  I don't really know what to think when it comes to his bladder....but this will tell us, and we will go from there.  One step at a time.

Next up we see Dr. Thomas and Sarah, part of the Neuro surg team....our BFF's!  No just kidding, but I think it's safe to say that we have a pretty good relationship with them, I mean after all, we don't go more than a couple of weeks without seeing them.  We heard Sara tell Justin that she had Easton lol....I'm telling you, watch out ladies, he'll get ya wrapped around his finger, and he has a thing for brunettes- she is just about the sweetest NP that you would ever meet though, and I am pleased to say that Dr. Thomas will be staying with the office for a few more months before he moves on with his residency! YAY!  So Sarah did her thing, and then Dr. Li came in, and it was short and sweet because we had just seen him the week before.  They are great though, and I am so so so happy that they are his Neuro team....we really love them.

Then we saw the rehab ped, and she was very nice.  We had met with her in the NICU, and she gave us some good info.  A little more insight on his BM issues, so we have to keep an eye on that, and we will.

Orthopedic came in next, and this one was kind of a whirlwind....they were talking about how on Easton's hip X'ray his hip was starting to slip out of socket and I was listening to what they were saying, kind of, but thinking in my mind....what in the world is that man talking about, he's got the wrong kid- he has never had a hip X-ray, so finally I interupted and asked, and they were like the x-ray from a month ago- I was about to say you have it all wrong, but then his NP said it was from his shunt all made sense then.  So finally I got  it into my head that yes, indeed they were talking about our Easton and went from there.  So sweet baby E is in his "super man belt"  aka a brace that goes over his diaper and keeps his legs spread eagle for 18 hours a day.  This is hopefully going to get his little hip to stay in, and hopefully we caught it early enough to sqwash it.....but, and here comes that beautiful silver lining that I try to find in everything, but we may not have caught this until it was out if it wasn't for the shunt series that was taken last month since we are still playing with the pressure of his thank you to the shunt revision....  gotta love that silver lining.  I will say that E doesn't mind the brace at all, even the receptionist was shocked that he was so okay with it, he's so easy going.....and just wait until I have a chance to pimp it out- he'll be begging me to put it on him lol.  (just kidding, sort of - I like to think he will think it's cooler lol)

Finally we saw the therapist, and by this time Easton was more smiles, no more batting those long eyelashes...just done.  Not grumpy, just pooped from all of the flirting that went on earlier with the other nurses lol.  So needless to say, she didn't get to see all of his tricks, but he did show her enough for her to say that he is doing good, and I had to say that he has 2 pretty kick butt therapists in Jamestown!  She was good though, very observant, asked a lot of questions, and noted how he scrunches up on his right side a little more... she was quiet, but explained everything she was looking at.  First impression was good- and her name is Mary, so come on- she has to be good.  (right?!)

So that was about it, it was short and sweet, and now we know what to expect so we can be better prepared for next time.  Just wanted to share our first clinic with you!

oh and that sweet teen-aged boy in the wheelchair that we saw first thing that morning, we saw again at the end of the day when we were picking up E's brace....and he walked out of there with his body brace and a walker.... and flashed us that same smile and that friendly hello as he strolled on passed.  <3 

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