Thursday, September 27, 2012

Lots of good news!

We met with another family whose son has SB last week. Ashley and Mark Robinson.  Their son Colton is 3 and may I say a super cutie! They also have a daughter Kadyn who is I believe 9. It was great to meet another family who has gone through a similar situation and understands.   We met up for frozen yogurt which we all know is this family's weakness! They seem like such a strong and tight family, it was really wonderful to see that.  Sometimes on the groups I hear a lot about family's that have been torn apart from the sometimes stress of what can come with SB.  In our case our little man has made us stronger and it was nice to see another family who was all involved and together in the journey.  They generously passed along Colton's ZipZac to us.  It's a mobility chair made out of a bumbo seat.  It's designed so kids that aren't quite big enough for a wheelchair have the mobility that other kids their age have. It gives them the opportunity to play and move with other kids. The one passed along to us is one of the original models with a bumbo seat but thanks to the popularity of these the family that designed them have been able to patent them and even have them in two sizes! They can get expensive and insurance doesn't usually cover them right now so getting one passed along to us is awesome!  Even if Eddie doesn't end up needing to use it (more on that with Shriner's info) we've agreed to pass it along to Shriner's afterwards.  We put him in it to see how he liked it and he LOVED it! He even tries to move the wheels (obviously he goes nowhere haha).  I've attached the link to the ZipZac website here Please check it out since this can benefit kids with other mobility issues.  They also do awesome stuff for kids that can't afford a ZipZac.

So We've had a lot going on here the past couple of weeks.  The Monday after the MRI we met with little Eddie's neurologists for a follow up. It went great and lasted all of 5 minutes.  He did everything he was supposed to in the exam room including talking and "people flirting" with all the nurses and doctors. When I explained that he can roll over on his own but seems to have no interest in it since I can't ever get him to do it.  He practically rolled right off the table. Little shit! The neurologists was so pleased with how he's doing. He said we probably don't need to be seen again for a year but he'll follow up again in 6 months.  YAY!!!

Friday we had our Shriner's clinic day.  We got there bright and early expecting to spend the whole day there meeting with everyone and being fitted for his braces.  I was actually a little excited to have him fitted.  Since the day he was born all we've heard about from doctors is the braces he'll need to walk.  How this appointment would probably be the one where we set up all of that stuff.  Watching all the kids a few months older than him start to get up on their feet I figured this would be the appointment for that.  I'm constantly worried he's going to fall behind in a milestone. Even though we see the awesome progress he's made, I'm always a little worried about the negative.  Right off the bat we met with the orthopedic surgeon and as he was checking the muscle tone in his feet and by the way Eddie was quite the show off! Thank goodness! He then looked up and said "I don't think we need to worry about braces right now, I think he's going to do fine without them." WHAT?!?! Eddie and I had to use everything we had to hold in our crazed excitement! After the doctors left the room we literally high fived each other real big!  Left and right this kids amazes me. We went from hearing that his legs wouldn't work once he was born to this! Every time these little milestones happen I think back to the day we had the ultrasound with the MFM doctor and he told us that if there was ever a position to be in with this SB this is the one you'd want. Anytime we would get negative he'd always be so positive.  Before we met with him everything was negative out of doctors and ultrasound techs mouths. We kept feeling defeated over and over.  He would say ultimately the same thing with a positive spin.  I really believe that's where Eddie and I started looking at everything as "glass half full".  We will probably need at least a brace on his left foot at some point but probably is better than definitely and I love that he's getting the chance to do this on his own! He may also need some sort of mobility assistance at some point for longer distances since even with the ability to walk good it may get painful at times. So for the next 6 months, my goal is the same as every other parent with a 7 month old. Enjoy the milestones to come, crawling and trying to walk!

This week we were all lucky to share a nasty cold! YAY! NOT! It wasn't the most fun having myself, little Eddie and Bella all sick at the same time but it was better than one at a time.  Eddie got sick after us and just in time to start up his second job again.  My poor honey. I felt so bad for him. As usual though he plowed through like a champ. 

We're headed to the Big E with the whole family on Sunday so that should make for an interesting blog post.  Stay tuned for little Eddie's first trip to the Big E! I'll let you in on a little secret (I'm the most excited!!!!!!)

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