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!!!!!!)

Saturday, September 15, 2012

My little beast!

Of course again, the MRI was easier than I made it out to be.  Little Eddie didn't even seem to care that he could eat or have a bottle.  When we got there they explained that they would give him some medicine through his IV to relax him and then while in the MRI room they would give him ansthesia through the IV that would knock him out literally as fast as it goes in.  She even warned me to not get scared about how fast he goes to sleep.  So after the first medication he was so adorablly silly.  He got so chatty and at first would try to "talk" and then giggle, over and over. I even tried to get it on video but just got him chatting and looking "high" haha!  Next, they brought him into the MRI room and gave him the ansthesia and as I rubbed his head he just kept his eyes open a little and looked at me like "they think I'm going to sleep but little do they know!" This is the same look I get even night and every naptime.  I have never had a little man that fell asleep easily.  I have a fighter!  The doctor giggled because he was supposed to just pass out and instead he was fighting it and even kept lifting his hand and tried to pull out the oxygen.  Then the doctor gave him some more and he still kept fighting it.  At this point we all giggled a bit.  So a bit more and he was finally out but he made sure his eyes were still open a bit.  I left the room and they started the MRI. About 2 minutes later I saw them go back in to fix the tag on his shirt and then came out giggling again. The nurse told me right when she went in he was just looking up smiling. They had to give him even more. What a little beast! She said she's never seen such a little guy take it like that. I guess she's never met my little Eddie, has to fight everything a lot like his daddy!  So once he was asleep the MRI went perfectly. He was awake the minute she walked in to get him.

After a quick stop to the cafeteria for a coffee and a bagel for me the two of us made our way up to the doctors office.  Let me start by saying the MRI was perfect! We won't need another appointment until he's 1 year!  Now I have to tell you about the office expierence!

After a little, how should I put this not argument rather let's say "hiccup" with the woman at the front desk who insisted on sending me to have him go get an endoscopy, yes an endoscopy! Let me paint a picture for you, A very tired anxious and cranky momma whose coffee hadn't quite kicked in yet heard endoscopy and lost it! At first I just looked at her like "What the hell lady?!".   Then as she told me twice to go down and have that procedure done I began yelling in the office like a crazy lady. Why would a neurosurgeon order a GI procedure? I wanted to say, shut up lady! But surprisingly bit my tongue.  Maybe the coffee was kicking in, or maybe I was feeling generous.  Finally I spot the doctor who looks at me with a half smile and says through the doorway, " um, is everything ok" now I'm thinking no idiot it's not! I opted for a polite "Great, how are you!" I think he found this amusing. He quickly cleared up the computer mistake and assured me there would definitely be no endoscopy. Damn right there won't be!

As he walked into the exam room I was totally spent at this point. First thing he says is "what's wrong with you." WHAT'S WRONG WITH ME? Ugh! I answered with a not so polite, I have a sick 4 year old and had 2 1/2 hours of sleep last night babies are tiring (but wanted to go on and say, and I just had a fight with your idiot of a front desk clerk and JUST WANT TO GO TAKE A DAMN NAP!). He seemed confused and just said "oh, your usually not so quiet" oh just shut up!

After I got home and took a nap I was much better.  I will try to be better caffeinated next time and keep my momma bear at bay. We have a neurologist appointment Monday so hopefully I'm a little nicer to that poor doctor.

The video of him being all goofed up

Tuesday, September 11, 2012

Back at it!

Tomorrow is MRI day again, not my favorite part of this whole SB world! Unfortunately Eddie has to work so I'm tackling this one on my own which totally freaks me out. Plus this time he'll be sedated like last time but last
time is was just an oral medication do less sedation but this time it's through an IV. Baby Eddie is a really tough "stick" so fingers crossed that the nurse won't have trouble getting the IV. We'll have our appointment with the neurosurgeon that afternoon so we'll know tomorrow how the shunt looks. Baby Eddie's been doing great so I'm optimistic that everything will look great. We also have a neurologist appointment next week so with the surgeon taking a look at his shunt an the neurologist checking out his Chairi we'll have all out based covered for a while! We also have an appointment with Shriners on the 21st and our PT will be there with us. We also have a call into Boston Children's to check out their SB program. We do like Shriner's but we'd like to see what their urology dept. has to say too. I'm also looking into adding a private PT/OT outside of the Early Intervention program so that he has a little extra at a facility, but we'll see what Shriners has to say first. Plus, I'm planning on adding a water therapy too. I think it's going to be a lot of running around but in the end I think it's going to be worth it. We really believe the more we can do for him now while he's learning to stand/move the better it'll be. The more he can do on his own without assistance (walkers/wheelchair) the more independent he can be.

Next weekend we are getting to meet up with another family whose son has SB. We met up on a group called United by Spina Bifida on Facebook and found out we don't live far from each other. Her son is a toddler so it'll be nice to chat with someone who is a few steps ahead of me in the SB world. Plus it gives me a chance to get some frozen yogurt at out local froyo shop and if you know me you know I'll take any excuse for froyo!

Best of all thanks to a bunch of awesome babysitters and "auntie" Nikki who came off a 24hr EMT shift to then babysit with her awesome mom, Eddie and I got to go to Boston to see a Red Sox game! It was awesome! My grandfather works for the Red Sox spring training camp and in true Tito (his nickname) fashion he got us on the field and everything! After the game the two of us headed to the North End (aka little Italy) and walked around a bit and had some pizza and picked up some cannolis and cupcake. (incidentally the dogs ate that night after we got home but that's another story!)

Well that's enough for tonight since the MRI is early tomorrow and I'm beat! Ill update about the MRI later this week!