Monday, June 17, 2013

What an amazing week!!!

WOW!!! What an amazing week we've had! First we headed to Boston Children's Waltham to talk with the Orthopedic surgeon there Dr. Karlin. What a giant sigh of relief he was! I had heard that some families didn't exactly feel comfortable with him since he's very dry. So I was a bit nervous but he was exactly what I needed! We've had our share of conversations with doctors and I have learned that the drier and more laid back they are the smarter they seem to be! I am the type of person that doesn't want a doctor to comfort me I want one who is there to work.  I mean a warm personality is nice but I get it. These doctors are the best in the country for a reason! So, he sent us down for some x-rays to make sure his pelvis and hip as well as his spine all looked great!  The x-ray tech was awesome! He had me giggling the entire time and was so good with my little drama queen Eddie who wanted nothing to do with being told where to stand or lay! Thanks to the wonderful world of SB my little man started crying the minute we got his diaper off and then proceeded to poop and pee all over the room. UGH that was fun! Thank god for the giant metal vest they make you wear or I would have been mad I didn't bring an extra set of clothes! Thankfully after all was done they gave him a wonderfully annoying squeaky toy to squeeze for the rest of the morning! Sorry to any other patients that got to listen to it throughout the hospital! Once we were back upstairs we met up with Dr. Karlin again to go over the x-rays. His pelvis and hips looked awesome as well as his spine! YAY! He said even his right leg is looking great and he doesn't feel like he has much more torsion than most kids his age. Plus, even though his left leg has significant torsion his ankle and foot seem to be OK and inline. This is great news! As Dr. Karlin put it if you have to have something wrong this is what you want. (Funny this is the same sentence we heard when we had the ultrasound with the Maternal Fetal Specialists) He explained that if it's needed it's a simple surgery of breaking the bones and resetting them in the correct places. The only thing is we would need to wait, doing this too early could damage the growth plates or the torsion could come back if we do the surgery before we know how his muscles work completely. Positive news was that he thinks that he's doing so well getting up on his feet and even trying to cruise that his pretty confident that he may start walking without any intervention. He even agreed that bracing wasn't necessary at the moment. He seems to be a very strong advocate for letting these kids do as much as they can and develop as much as they can before intervening. This is so exciting to me since Shriner's ideal is a bit different. They were more pro bracing and such.  Not to say that's a bad thing, it just wasn't right for us.

Also this week was our big celebrity appearances! Monday we were on a local morning show called Mass Appeal promoting our local Walk N Roll for Spina Bifida. Ugh, I was a nervous mess. As much as I don't want to share it with you, I'm going to since the point of this blog is to share our ups and downs! So here it is! By the way, little man was quite the TV star! Thank god since thanks to his scene stealing no one was listening to my nervous rambling!

Then on Wednesday we were on a local radio morning show The Bax and O'Brien Show on Rock 102.1. That was much easier and I sounded so much better! Too bad I can't post the link to that on here! If your a Rock 102 member on their website you can hear it. It's the June 12th show and we come on 4:50 min before the end of the full show. They've been running our PSA's and even posted it on their website Saturday morning!

We were so confident we'd have a great time on Saturday but had no idea how well the walk would turn out! It really exceeded our expectations! I don't have count of registrants for that morning yet but I know that we had about 90 online registrants and so many people registering that morning that we had to push the walk start back almost an hour! There was a steady stream of people at that table starting right at 9am! If was awesome! Our band sounded great and the energy was amazing! I can't wait to see how much money we raised in Western MA! Plus the SBAGNE as a whole raised over $90,000 as of that morning and that doesn't count all the money that came in at all three walks since Friday night! Their original goal was $70,000 and last year they raised about $60,000! This is record breaking for us!

I was so grateful to see the amazing support for our team! We had so many people there to support Team Warrior Eddie! Sometimes I look back to where we were over a year ago and I remember sitting crying with Eddie wondering what we would do. If we'd have a support system. Well, wow have I been blow away but the friends and family we have. Not to mention the very special group of families we've met since starting this journey. There's this special bond you form with other parents with a "special needs" child. As unbelievably grateful I am to have amazing friends and family support, sometimes only those other parents get what it feels like to go through those hard days. They are the only ones who get what it's like to cry those heartbreaking tears that come with a "diagnosis". It's funny we all have a different "diagnosis" but we can all relate better than anyone else! The looks we give each other when a parent with a child with no diagnosis says something like "Ugh, my child doesn't like to eat anything!" We just need to look at each other and we're silently saying "Oh yea, must be tough! Our child doesn't have the muscle tone to swallow!" "Shut up!" Or when a stranger randomly comes over and tickles one of our kids and we all are on the attack because the child on the Autism spectrum doesn't do good with spacial issues and touching! We become a pack of momma wolves! Watch out!!! We'll now I've started rambling again. Here are some pictures of the day (Brought to you by Blue Glass Photography! She did an amazing job!!!)

Team Warrior Eddie!!!

The Western Mass Warriors with our little Warrior!

"Little" Warrior Eddie and "Big" Eddie!

I'm so proud of how it all came out and so glad I had my partners in crime my mother and my fellow SB warrior momma Ashley! Plus, we were so lucky to have two board members come out to help us out and they maned that Registration table like nobody's business! Thank goodness for them because without them I think the three of us would have been a big ole stressful mess! Plus, we were so lucky to have family and friends volunteering their time to help out with games and face painting and raffle tables, as well as set up and take down! It all went so smoothly! I'm sure I'm forgetting to tell you guys a ton but there will be more to come! I'll hopefully soon be blogging about a new catheter program! Which is exciting in this household because we could really use a new cath direction! Something easier and less wasteful! We know that the easier it can be the easier to train others!

So stay tuned!!!!!!!!!!!!!