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 http://zipzac.com/ 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!!!!!!)

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

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!

Plugging along!

The past couple of weeks have been very normal! I love it. We have our 6 month check up for baby Eddie and it went great! He weighed in at 16.6lbs and 26"! I cant believe he's already 6 months old! He's eating like a beast 3 meals a day (usually). Cathing is going really well, I think I've got the hang of it finally. Physical therapy is going great also, this week he's showed so much improvement. He's close to sitting up on his own and we've been working on stretching his front hips and he seems to have much more range this week. Much more flexibility. He's even putting good pressure on his legs while "standing", now that's his hips have more range he can stand with his feet a little flatter. I'm so proud of my little Warrior!

Bella and Eddie went camping this weekend. Great for them, not so great for me. I've been so lonely here without them. The house is way too quiet! Thank god they come back today! September is a bit busier
So I'm sure I'll have more to blog about!

Have a great end of summer!

Picnics, Picnics and Olympics!!!

I know it's been a few weeks since I've posted, honestly there hasn't been much to post.  Which is a great thing since that usually means life is pretty boring. Although I wouldn't say things have been boring around here we've just been so busy between hitting up multiple parties on the weekends and watching the Olympics.  Last weekend was baby Eddie's baptism. Now I know that anyone who knows me probably gets surprised to hear that I had my child baptized but hear me out first!  We've been attending church a lot lately, initially as a chance for us to do something as a family and if nothing else have the chance to reiterate and reinforce lessons in morals to Bella and ourselves.  Now it is no secret that I personally don't believe in the literally teachings of the church. I don't believe in a God necessarily but I do believe in God in the figurative sense of the word. I believe in a higher state of being within oneself.  Probably more along the lines of a Buddhist belief.  I am beginning to find my own path within the church.  I am able to take what I hear in church and translate it to an extent to my own belief system.  I am finding a way to meditate and "pray" within my self my way.  Honestly isn't that what we all do on some level.  We are all different so we all have different beliefs, no two the same.  Isn't it about finding a way to connect and live life to the best moral standing that is important? I'm slowly figuring it all out for myself and honestly can't guarantee that it will lead me in the way of church or something else.  Lately I need something to help me find that faith in myself to help me find a place.  I don't think that will be in the way of Jesus or God but if anything self realization.

So enough of that, about all our partying!  Baptism was Sunday and we had a HUGE party at my mom's afterwards! After a little bit of rain (which I firmly believe my Uncle Steve sent to us from the heavens since it was also his birthday and I can't remember a trip or event with him that it didn't rain, it actually became a running joke!) sunshine came through and it was beautiful the rest of the day.  Everyone seemed to have fun and we had so many awesome family and friends there.  It is always wonderful to see how many family and friends we have to support us and our children!  We also had a bunch of other picnics this weekend which has been SUPER exhausting but lots of fun.  On top of it all Bella has a little cold and we are all very OVERTIRED! I'm thinking today will be a day of recovery and cleaning the house!

Us with Fr. Bill and baby Eddie's God Parents!

We've been watching the Olympics like mad around here and we are totally Team USA in everything but I have to say we have been very Team South Africa this week! There is a runner named Oscar Pistorius the name alone makes him a BAM! For those of you who aren't Dane Cook fans (Bad A** Mother, well usually there's a F at the end but you can use your imagination!) He has done something no one has ever done he ran the 400 in the Olympics as a double amputee!  He is a gold medal Paraolympian and not only ran in the Olympics but made it to the semifinals!  I posted a video about his story and I encourage you to watch it.  He's extremely inspirational no matter who you are.  Once Eddie and I heard about him it immediately struck a cord with us.  I kept thinking what an amazing mother he must of had that could instill in him the confidence and will power to get up everyday and show the world that everyone is different and that "disabled" doesn't mean "unable"!  I posted on Twitter and happened to @ him and within 10 minutes got a direct message from him! Which happened to be in the middle of the night in London! It wasn't a particular personal message just a quick line but Eddie and I were jumping up and down here feeling like tweens getting a message from their favorite boy band!  To us Oscar Pistorius is a glimpse of everything our little warrior Eddie can do in the future, ANYTHING!  Then I tweeted the picture of the direct message and said that even though he probably sends out 1000's of those same messages it meant so much to us! 10 minutes later ANOTHER message!  I felt like such a geek getting so excited, but he is officially a favorite athlete for us (sorry Wes Welker, but I still love you too!).  We'll be watching him in the 400 relay also and even though we'll always cheer "Go USA" we'll be cheering "Go South Africa" too!

 Here's the link to the video:
http://www.nbcolympics.com/video/track-and-field/oscar-pistorius-on-today.html

My DM with Oscar Pistorius!

Making history at 2012 London Olympics

Hey, I got this!

I remember when I first had Bella I was so overwhelmed as a new mom.  I just couldn't get the hang of it, until one day when I just got it. I don't remember the exact moment but I remember that I felt like "Hey, I got this!" and then I was a pro.  When we found out we were having a second little one, I thought to myself no biggie I'm a pro now.  Maybe I would've slipped right into it under other circumstances, you know the one's where everything goes the way I plan! (Did you get the sarcasm there?) Well, it didn't quite go that way.  I have spent the past 5 months thinking, What the hell what I thinking? Two is harder than I thought! This is complete chaos! I'll never get the hang of this! Then last night after we got home from 6 flags, everyone was asleep and I was going over the day and it finally hit me! Hey, I got this!  We managed to balance a baby that easily overheats, (on a 92 degree day by the way) a catheter regiment, and a 4 year old whose been having meltdowns left and right lately!  Amazingly (with a lot of help from Nana, Gramma and Grampa) we did it. Not without a few hiccups we did it!

We packed a good sized cooler with ice packs, frozen mini water bottles, frozen washcloths and teethers.  A stroller fan. Lots of formula bottles and a bunch of catheters. Suntan lotion, hats, bathing suits and extra clothes! Of course this was mostly packed the night before with my nice little list next to the bag! Thank you type A personality!  As we headed into the park it seemed like we'd never see an actual ride, since we stopped multiple times to get ourselves situated.  After a couple kiddie rides for Bella we headed to The Grove where we had free food and soda/ice tea.  We were with Eddie's work group (we'll Eddie, my mom and my dad's work group) Everyone works for the same company. It was great because everyone ate and while we were there we got to use the bathroom there to cath the baby. It worked out well since it was AC and cleaner than the ones in the park. I was surprised that I managed to cath pretty well even with people in and out of the tiny bathroom and the hand dryer going off every two seconds thus scaring the baby.  So mission accomplished! We were off to rides again. Bella did so great, she barely whined the whole day.  She was even really patience while the adults wanted to go on rides.  We did have a few hiccups, like losing my drivers license! Boo!! Otherwise, a successful day! I even went on a few roller coasters, which is totally out of character for me! 

So, it turned out great! Baby Eddie didn't overheat at all! He even napped at his regular times.  Bella had fun without any major meltdowns (she even cleaned her room this morning, like really cleaned it!).  Both kids came home, bathed and were in bed by 9:00!

Guess what SB, I got this!

Gramma and baby Eddie on his first ride, the carousel!

Nana and Bella on the teacups!

Cowgirl Bella (I think her TN came out)

Us with the characters (and Cousin Mikey as Sylvester!)

Bella's favorite ride, the swings!

Baby Eddie staying cool!

Just a little brain surgery!

So I'm saying this here but don't let Eddie know I said it or he'll remind me every day!  I've realized the more you freak out about something the more it's usually not that bad!  Surgery was a breeze last week.  He went in at 7:30 and and hour and a half later the surgeon came out. I was all freaked out and sick over it since he said it would only take about 20 min.  In true Kristin fashion. I was upset about nothing since he said the actual procedure only took about 10 min.  I must have looked a mess because I felt like I was going to pass out from the relief.  He asked if I was okay. Oh gee!  Then off to see him in recovery where again I was all worried for nothing.  When we walked in he looked up and gave us a big smile! Like "hey ma, just a little brain surgery!"  This kid continues to amaze me.  He only had to be there for that day! They let us go home late that night around midnight, and the only reason we waited that long was because he needed 3 rounds of antibiotics spaced out every 8 hours.  Plus, they also didn't even need to give him any narcotics. Just a couple of rounds of Tylenol. I thought for sure the next day would be brutal for him as far as pain.  Nope! I gave him one does of Tylenol in the am just in case but he didn't seem uncomfortable and nothing after that.  I did give him some at night because I thought he might be uncomfortable but it turns out he is just having trouble going down lately.  (We've had a few tough evenings lately.)  Nothing too bad just a little fussiness right before bedtime.  Good thing one of us has enough patience left by this point to rock him to sleep while he whines.  Friday morning we started cathing.  NOT FUN! Although, again in true Kristin fashion I was all worked up for nothing.  It isn't that bad and by yesterday he was getting better at sitting still while I'm doing it! The first few days consisted of either me getting pee all over me or getting no pee at all.  Yesterday I got it 3 out of 4 times! Without much of a struggle.  I feel kind of bad though since Eddie hasn't really done it yet.  He's watched me but my control freak self takes over and wants to just do it.  I think now that I'm getting the hang of it I'm ready to let him start trying.  I just figured since I'll be doing at least 2 or 3 of them a day I should get the hang of it first.  I'm so thankful though that he jumped right in right away and wanted to do it.  I know most dad's would not only be freaked out a bit but I also know a lot of Dad's who don't even change diapers.  I'm hoping once we get it down it will seem easy for others (sitters) to want to learn how to do it.  I don't expect anyone to be comfortable with it.  So I take no offense if our babysitter list starts to dwindle.  To be honest, if it wasn't my cutie I would probably be a name dropping off of someones sitter list. 

Baby Eddie headed to the PICU from recovery

We headed to the Chicopee Fest of All Saturday night to watch a friends band "Trailer Trash" play and watch the fireworks.  It's a 5 minute walk from our house to the park which makes it nice.  I didn't stay the whole time since lately I've noticed baby Eddie is extra sensitive to some stimulation like loud noises or bright lights.  We were told because of his Chairi that this might happen.  It could just be because he's a baby too either way I thought 1. it would be easier to cath at home then there and 2. the fireworks would be pretty loud and scary for him.  Plus, selfishly I hate going to the fireworks.  I'm not a fan of loud noises or crowds. It's not a favorite place of mine. So while baby Eddie slept I watched them out of my front window.  I could only see the high ones but that was good enough for me.  Watching the idiots that missed it sit in traffic outside my house looking for a parking spot was much more fun anyways!

Last night we had our friends Pat and Hannah over with baby Eddie's bestie baby Elias.  They were so funny touching each other and inspecting each other.  We've decided they love each other!  They're only a day apart so they have to be best friends forever like it or not!

Elias and Eddie "hugging" and checking out the camera like we're crazy!

Hope everyone has a "cool" and fun week.  We'll be at mom's pool all week keeping cool! Hopefully a couple of play dates to help the time pass!