Monday, November 19, 2012

Not so New Year's resolution......

Ok! I know, don't say it! I didn't keep my word to blog again! This time I mean it though, I'm making a not so New Year's resolution to keep it up. So updates! Eddie's been doing great! He's 9 months now! I can't believe it! He finally has 2 teeth coming through! I didn't think we'd ever get any! He's eating like a piggy even though he's a peanut, I'm not sure where all this food is going because he weighs next to nothing! He's also tolerating tummy time a little better than before, I even found him on his belly the other morning in the bed. Not happy but there! So I'm calling that officially rolling over! He's also so close to finally figuring out how to use those arm to move! I swear the minute he does I'm throwing a Eddie's moving party! He just wants to move so bad. I find it a bit ironic that before our little guy was here all we worried about all the time was his legs, "were they going to move would he crawl or walk even". Now I'm thinking "will he ever figure out how to use those damn arms?" You should see him, those super strong legs going like crazy to get no where! He gets so frustrated. It doesn't help that one peep out of him and I come pick him up. He's mastered the art of whining and mommy manipulation. Eddie 1 Mommy 0! I'm learning to put him on his belly and walk out of sight line. He still whines but he also tries much harder to get moving. I think it's funny that Bella (who excels at everything even when we think she won't) didn't crawl until Christmas (she was born Jan 30) and didn't walk until we were all in shorts, may have crawled slower than Eddie. Fingers crossed we'll be moving before Christmas (we'll New Years!).  The PT mentioned a toy that might be good for him (it would work for him like the PT peanut balls) it's called a Rody Horse. I found them online but can't find them in a store anywhere. We were walking through Babies R Us the other day and found one like it by Imaginarium for way less money! I was so excited, brought it home and boooo, it's completely rubber! Totally latex! I was so sad. With Eddie having a few latex reactions obviously this was a big No No. So I'm off to the store again today to return it. So if anyone finds Rody toys at the store around here for inexpensive let this girl know!

So I'm going to tell you a secret because I can't tell Bella and it's killing me! For months she's been asking us to bring her to NYC. We kept talking about maybe bringing her for Christmas or her birthday but I kept wondering how in the heck we'd be able to afford that. Well a bus trip through Eddie's work came up and we jumped at it! It wasn't too expensive and it took payroll deductions out of Eddie's check so it made it a lot easier. We're so excited to take her and we've decided to leave the baby home with a sitter so she can have some "just Bella" time. So has been such a great big sister and patience with the whole less Bella time thing. Well mostly. Lately she seems to be getting a bit frustrated that there's a attention pull in the house and I think she needs this and absolutely deserves it! Plus, now one of her favorite teachers Miss Janyce from her old school lives in NY and is meeting up with us to explore. She's going to freak out! I'm freaking out! I'm keeping it all a surprise until the last minute. We figure this was she can get a good night sleep and also we won't have to listen to her talk about it over and over again.  I'm not even going to tell her about Miss Janyce until we're there. In true Kristin fashion I have already planned and mapped out the day. I can't wait!!

Speaking of things I can't wait for, this week for one! Thanksgiving and the start of the Kristin Christmas season. There's so much I'm thankful for from my amazing family and friends support system.  To the roof over our heads and warmth in our house. The fact that Eddie loves his job and has great employers and supportive bosses.   Being luck enough to have great health coverage for little Eddie and awesome doctors, and to the amazing community out there in cyber space! I'm not sure what I would do without it! Thursday I'm having the whole family over for Thanksgiving and I'm so excited! Menu is planned and we are party ready, but what I'm most excited about is Friday! Not Black Friday but the day I like to call "Finally Christmas Decoration Day!!!!!!!!!" Yes that many explanation points! There is nothing in this world I love more than Christmas! It's the only time I will tolerate snow too. I've got a lot of my shopping done and can't wait to wrap and listen to Christmas music and drink peppermint coffee. 

So I don't usually have much comments or interaction on here other than my big babbling mouth so I'd love to hear from you guys and see who's out there! Being thankful is so important and knowing what you're thankful for is such an important piece to staying grounded. Without it we would have been lost many a times.  If you get a chance I'd love to hear what you're thankful for! Leave a comment on what you're thankful for!

Friday, November 2, 2012

Bad blogger mommy!!!

Hi everyone! I'm so so so so sorry! I'm a bad blogger mommy! I really meant to update after our trip to Boston last week but totally forgot between colds, stomach bugs, Halloween and work! No good excuse just mommy brain! When I started getting tons of "What happened in Boston?!" questions I realized I forgot to blog, then it still took me a few days to update! So here goes!

Boston went awesome! It was also nothing short of eventful as everything we do is! Bright and early baby Eddie, myself and my mom took off for Boston! With a small amount of traffic considering the time of day we arrived right on time! We didn't even get lost on our way through Boston. (Although my mom did spend a lot of time gripping the side of the door bracing herself from my city driving!) We got there didn't we! Once we got there it was like the Disney World of hospitals. Huge and colorful and very busy! The valet was like the airport drop off three rows of drop offs! We then headed up to the ultrasound. Everyone was very nice and efficient. It went very quickly! We got the all good! Then headed for a coffee and snack in the cafe while we waited for our net appt which wasn't until noon. This is where things got a little eventful. As we headed out and up and down the elevators (we took the wrong floor) we were on one floor when a woman coming out of the elevator had a friendly visitor following her.................. a lovely cockroach! EWWWW!! He crawled out of the elevator shaft. My own bugphobia (yes I made that word up!) crept in and I was a nut after that! I would like to say the hospital was very clean and I don't think they have a bug problem I just think elevator shaft + city = inevitable occasional bug. We just got to witness it! Next we headed to the front desk for directions to our next destination (which you need that place is huge!) Our not so friendly clerk sent us on our way (again no reflect on the hospital everyone else was very nice).  After a few more elevator rides we walked in and were told again wrong floor. Thank you not so friendly front desk clerk! Another elevator ride and a serious need for some Dramamine ended us up in our destination!  11:45 phew! Next we were told that we may not get in until 1:45, confused and nauseous I may not have been the sweetest in the waiting room (I do think between myself and my mom hemming and haaing we annoyed him enough to call us about 12:15)

Finally seeing the doctor! At this point we finally got to see the doctor. The two doctors we saw were amazing! So nice and right off the bat we felt like this is exactly where we were supposed to be! They shared our hesitation about the large amount of Ditropan he was on and the quality of the uro test that were done. So drumroll please............................... No more Ditropan (well for now) we're also still cathing for now but only a couple of times a day to make sure there's nothing there until they know if he really does have reflux or not. YAY!!!!!!!!! So we'll be continuing the antibiotic while he's still cathing and on Jan 30 we'll go back for a new urodynamics and see what we've got once his bladder is working the "normal" way it would. This is not saying we won't be back on Ditropan after that but he said probably less of it.

We have seen a change in his bladder now he goes all the time. Doesn't seem to hold anything at all.  Nothing comes out in the cathing but that's ok as long as nothing is going into his kidneys. Fingers crossed we make it until Jan without any UTI's!

So I think that's about it about that. I'm do plan on blogging again tonight about his new milestones! So stay tuned!

Thursday, October 11, 2012

The secret strong Mom's don't tell you!

I'm going to let you in on a little secret............. Shhhhh don't tell anyone...............

Even strong mom's get scared! Actually probably more, it's that fear that drives their strength. But, every once and a while that fear creeps up not as strength but sometimes in other forms like sadness, or resentment. 

For every 100th day that I wake up and look at my little guy and think, "God, you're so perfect you're going to have such a great life", there's a day where I go into another room where ever it is in the shower or late at night and think "This isn't fair!"

When I found out I was pregnant I kept thinking "I hope it's a boy so he can play pee wee football and Bella can be a pee wee cheerleader" I know this is a silly little thing but what makes me happy all fall/winter is weekend football and I love it in every form from high school to NFL. Even to the point that we're hoping to reach out to the Western MA Warrior's semi-pro football team when we start fundraising for out Rock N Roll for with Team Warrior Eddie! I think my little man is such a warrior! By definition {a person who shows or has shown great vigor, courage, or aggressiveness}.  This, this is the strong mommy talking.

The other day I overheard a couple of ladies talking about their sons playing pee-wee football. For some reason it hit me so hard. I get that my little guy is going to do so many amazing things. Things I can't even imagine right now but for some reason that little thing, the idea that I won't get to watch him run around in those adorable little football uniforms and me getting crazy aggressive and nuts watching him. (Yes, I am that crazy person while watching a football game) That equaled an in the shower cry, then I see him bright and early in the morning holding that little monkey giving it kisses and then passing it to my face for me to kiss it and then burying his face in mine to be lovey. That's when I realize that this kid is so cuddly and lovey, let's be real, he's no football player. He may be a warrior but I can't see him going after and tackling another kid. I see him nicely asking for the football. That's when I realized that no matter what, my kids are going to pave their own way and not the one that I made up for them. Kind of like how Bella is all about pink and princesses and Barbies (none of the things I know anything about) not the tomboy I envisioned. These are not disappointments just a new scenic route. That's the whole point of having kids right, to see them develop themselves and find what they love and do great or not so great! 

So get up strong mommies and no more pity party! Get over your "plan" for them and let them make their own "plan"! 

So, go Patriot's! go put your kids in some crazy fan clothes or whatever you love because one day they'll be a Giant's fan and you'll think what happened to my kid? (Just ask my family, all Red Sox fans and I'm a Yankee fan!)

An old photo, but one of my favs!

Monday, October 1, 2012

One year!

October is Spina Bifida Awareness Month and it reminded me that it's been almost exactly one year since we got the SB diagnosis. Wow, I can't believe how far we've come. I remember not sleeping the night before the appointment because we were so excited to find out if it was a boy or a girl.  I remember Eddie's literally jumping out of the chair in the ultrasound room when she said it was a boy. I remember how the air in the room got so thick right after that when the laughing and joking stopped and the tech got very quiet. I remember the words I'm so sorry said over and over again to us in that room without any other explanation.  I remember being ushered into the doctors office by all of these people who looked like they were about to tell me my baby had died. I remember balling in the doctors office waiting for someone to come tell us what was going on. I remember hearing words like "birth defect" and "death" and "termination". What I don't remember of that first appointment was anything positive. Maybe there was but as far as I remember it was a death sentence or a child that was a vegetable.  Don't get me wrong, I have an amazing OB but there just isn't enough awareness about SB even in the medical field. After we met with the MFM specialists things were much more positive but even throughout this journey even now, we heard and still hear the "I'm sorry" line.  I'm not!

My little man is my warrior not doubt, he has beaten the odds given to him in the beginning.  Barreling through surgeries like a super hero!  He is also my little miracle, but so is my daughter.  I don't see him as a miracle because he beat those odd to get here or because he has SB, I see him as one because any mother will tell you that bringing a baby into this world is a miracle! The fact that you grow something inside of you and can love it as much as you do is a miracle! I see Bella as much as a miracle as I do Eddie.  I even see it in my friends eyes when they look at their child. Their miracle is just like mine! It's tough to see others look at him and say "Wow, what a miracle!" and not mean this baby like all others is a miracle. I see him sitting next to his little "bestie" and to me their just two best friends for life. Who can celebrate their birthdays together one day! 

Sometimes it's tough to hear people introduce him and follow that up with the SB conversation. I think inside, "why do we always have to open with, he has Spina Bifida?" I understand though that every conversation is a chance to erase the stigma of SB and bring awareness. I heard about a recent episode of Sons of Anarchy where someone was introduced to have had SB and it was because their mother did a lot of drugs.  Fact #1 That's not how you get SB. I did not take drugs, I was not on antidepressants even. We just won the SB lottery so to say. Trust me in the beginning I spent a lot of time trying to figure out the magic formula that made SB, if scientists can't figure it out I'm not going to be able to.  Best we can figure is that my body doesn't absorb folic acid properly. So folks, take you folic acid!!

This month I'll be trying to post as many links to for SB awareness and I hope that you share this blog with others this month so we can spread it! Just like any cause, the more awareness the more we can understand and maybe one day find out and maybe stop  this birth defect from happening!

First link here;

What is Spina Bifida -

Folic Acid -

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!

Sunday, August 26, 2012

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!

Monday, August 6, 2012

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:

My DM with Oscar Pistorius!

Making history at 2012 London Olympics

Tuesday, July 17, 2012

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!

Monday, July 2, 2012

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!

Monday, June 25, 2012

Tough week.

So all the news is in. Where to start? How about with Fridays Shriners appointment. We had the urodynamics test done Friday and after getting peed all over and watching my poor little guy scream and scream results show a neurogenic bladder. Which basically means that his bladder does void but it also is constantly contracting. With this causes a reflux into his kidneys. If not treated he has a huge risk of kidney infection or UTI and the bladder muscles wall hardening so much his bladder would be too small to hold anything. So the only solution is to start a cath program. This consists on having to cath his 4 times a day for now to help void his bladder completely. Plus, a medicine called Ditropan which is basically a muscle relaxer for the bladder. This medicine has a side effect of constipation so he'll probably need to also start a bowel program soon. Something like miralax or enemas. From what we've been told this will never get better. It will either stay the same or get worse and odds are it will get worse. I've talked to a lot of other people with SB and some who cath and they say that at some point usually around 9 or 10 years old they can cath independently. So that's good. For some reason this is really freaking us out. We have handled everything with such strength and ease but this week we're losing it. Mainly me. Maybe because we expected everything else but thought he had weak bladder/bowel muscles so never expected this. For almost a year now I feel like I've handled everything with strength and hope This week I feel like I've lost my way. I just need to find that faith in myself that I can do this. That I became a mother to take care of these beautiful children and have faith in my skills as their mother.

Tomorrow is his shunt surgery. We go in for 6am and fingers crossed will only be there one night. I really hope it'll only be one night in the PICU. I really hate the PICU. We have loved every aspect about Baystate but honestly did not have the best experience in the PICU or NICU for that fact. It's not very comforting and there's no where to sleep. The PICU had like 4 or 6 beds and all crammed in one room. One kid coughed and screamed all night last time and baby Eddie got no sleep. I hope this time is more soothing for him.

We will start cathing him regularly later this week after things are headed back to normal.

Positive note is that we got the ok to start trying a little cereal with him. They are ok starting early to work with his EI and PT so he can get the best start possible. Plus we've seen he loves the pool! I'm thinking of asking our PT to come to the pool for our next session.

I'll check in later to let everyone know about the surgery. Thank you all for your unwavering support!

Tuesday, June 19, 2012

A lot of news...

My Aunt was here for a visit from TN
My sister-in-law and Eddie

My adorable grandmother
Me and my "little" brother

So we've had a lot going on in the house the past couple of weeks!  I'll start with the Bowling Event we had last week. It was so much fun and we raised $600 dollars from it! I can't believe the amazing support we have! We are so lucky for the friends and family in our life! 

We also received the MRI results and although they weren't exactly what we had hoped the good news is that the shunt is working properly and still in place but has slipped down about 3cm bad news is since it's so mobile he'll probably need another surgery to suture it back into place.  I'm sad about this but hoping it won't be as major as the last one.  I'd hate to see him that uncomfortable again.  We'll see the neuro tomorrow for more info. Fingers crossed that if there is another surgery our hospital stay won't be long and hopefully we go straight to the pedi section and get to skip the PICU.  The PICU is no fun. 

Friday we had the VCUG test done.  It's when they fill his bladder with a catheter with contrast die and do xrays to see how he voids it. Check to see if he can void on his own and if there is any reflux into his kidneys. This was NO fun! Plus side he definitely has feeling "down there"!  He did not enjoy any of it! Especially having his legs held down.  They were so surprised how strong he was. Take that SB!  The results were kinda unhelpful.  The radiologists said that there was a small amount of reflux to the right kidney.  From what I hear this test isn't real reliable since you're forcing fluid up instead of down and while they are screaming (and he was purposely holding his bladder, he had no problem voiding once that catheter came out. They had to have someone come clean the room afterwards).  I'm hoping the little bit of reflux is just from all of that.  Plus he's never had a UTI and never had a problem on his kidney ultrasounds, so that's a positive sign! We have his urodynamics test this Friday and will have much better results then. Fingers crossed again!

Our "Warrior Eddie" team!

Saturday was the Walk N Roll for Spina Bifida in Canton, MA up near Boston.  We had so much fun, despite the 40 minutes of traffic on the way there! Leave it to MA to have traffic that barely moves that long for what..... NOTHING! A lane merge! Oh well, we still made it in time and had a fun little walk. Total funds raised by Team Warrior Eddie was over $1500! Thank you for everyone who donated! Next year the walk will be in Stanley Park so I hope to see all of you in this picture!

Bella with her teachers

Bella with her student teacher Miss Lyndsey

Bella and her other student teacher Miss Janyce

Bella and her "diploma"

Yesterday was Bella's preschool graduation, and let me tell you she is quite the performer!  She is hilarious! Singing loudly and at one point we caught her on stage mouthing "I'm just so happy I could cry" and then fake crying. She's too much! I was so proud of her a a little emotional about how big she's getting, and lucky me I get to do it all over again next year since she had one more year in preschool. Thank god! Yesterday was also Eddie's first day at the new job! Ahh it feels good to say it! I've kept from announcing it until everything was official, I didn't want to jinx anything! It's still with the same company but it's in a new position and a new location.  It's literally the perfect job for him and perfect hours for our family. It's also only 10 minutes from our home. He's very excited!

I'm also asking for everyone to keep my grandfather in their thoughts, he was rushed to the ER yesterday for a pancreatic attack.  They are keeping him there a few days so fingers crossed again for a healthy outcome!

Sooo, this week is busy too! Tomorrow we have a neuro appointment in the morning and a 4 month check-up in the afternoon. Friday is a trip to Shriners for the urodynamics test.

Ooohhmmmff {big sigh}..... I think that's everything! Sorry for such a long post today!

Friday, June 8, 2012


 *Eddie snapped this photo while I was "rocking" baby Eddie to sleep. (ready to fall asleep myself!)

Today was our big MRI day. This is the first one baby Eddie has had since he was born.  To recap, the reason we had one done today was because baby Eddie's shunt has slipped down significantly and the neuro would like to make sure it's not causing any problems.  Once he receives the results he will decided if he needs another surgery to correct the shunt.  I was so nervous about today's MRI, mainly because they had to sedate him for it and I wasn't sure exactly what to expect.  After the last surgery I was so scared to see him come out of sedation.  Luckily it was a much easier experience.  I guess I should've figured that since brain surgery and an MRI are at quiet the opposite sides of the spectrum of procedures.  Unfortunately for the poor little one I had to wake him at 4 to give him a bottle of pedilite and then keep him awake as much as possible until the MRI at 8. He did manage to sneak a quick 20 min cat nap in there while I was getting Bella ready for school.  Once it was time for the MRI he was so exhausted that he probably didn't need much sedation anyways he was ready to pass out all on his own.  They gave him the medicine and wrapped him up all warm and put him in my arms.  Before I could get comfortable in the chair to rock him, he was asleep.  The MRI was quick and he woke up nicely.  He was pretty out of it most of the day, he snoozed on and off all day (actually he's sleeping again right now as I write this, right through a feeding).  We should hopefully hear something about it next week.  As usual I'll probably call the neuro in a few days to check up on it.  There's that impatience again.  All in all it was relatively painless.  We're looking forward to a fun night of bowling Tuesday night for the fundraiser and I promise I'll post lots of pictures on Wednesday!

Monday, June 4, 2012

Updates Updates Updates!!

*I caught this little moment the other morning and it totally melted my heart!

I have spent most of my teenage and adult life repeating over and over again "You'll see me in the gym when hell freezes over..." Well, hell has frozen over! I have can no longer put off the inevitable. I am not 20 anymore.  Where I used to be mistaken for a high schooler I am now mistaken for a college kid. Not that I'm complaining, college would still at most make me 22 and that's way better than almost 30! After the second child, your body does not just bounce back. Yes you can lose some weight but things just don't go back where they are supposed to be without a little help from our old friend "the gym".  I will no longer be sharing clothes with my 16 year old cousin, which is the worst part since she has awesome hand me "ups".  So I have started going to the gym. Partly because I can not in good conscience get on a beach like this since that would make me the woman I talk about at the beach and partly because if I spend one more month with a gym membership without using it my husband may kill me!

So off to the gym I've been going almost every other day plus my little workout at home.  I hate to admit that I'm actually beginning to like it. Not while I'm there of course, while I'm there I'm quietly swearing to myself how much it totally sucks! It is a chance for me to have a bit of "quiet" time to myself. By quiet I mean without Bella chatting in my ear every 5 seconds or baby Eddie needing something. I love my mommy time with my kids more than anything but being a stay at home mom comes with not being able to just shut off my brain. I'm always on. The gym is a nice getaway for a few hours a week. 

Friday is our first MRI for baby Eddie and I'm crazy nervous. I'm not exactly sure why but I am a little freaked out that they have to sedate him to do it. I hoping all goes well and we hear that the shunt hasn't fallen so much that he'll need a revision. That would be another surgery and that would just break my heart. I have known that more surgeries were probably in our future but every time we hear there's one it sucks.

Baby Eddie started PT last week and has had another one since.  He did awesome! She was so impressed by how much he can do. How badly he wants to crawl at not even 4 months. Everything she does with him on his tummy she has to hold on to him because he's pushing his legs and taking off. If only we can get him to use his arms too he'll be going like crazy!  She thinks his legs are doing a great job straightening out themselves.  She does agree that he'll need braces at some point but is optimistic that it may not be forever (which is what we heard).  She also said that all his nerves and muscles seem to be working great and that some of his muscles are just too tight or too weak and with good PT we could help a lot of that! I feel like that is so amazing. His little legs have come so far since he was born. All on their own with a little help from exercises.  I'm so glad we pushed for a OT in the hospital to come up and teach us some exercises. They all kept telling us that it was too early and that it wouldn't matter. What do they know? My boy's a fighter, don't tell him he won't do something!

We're really excited about the bowling event we set up to raise money for the Walk and Roll for baby Eddie's team. It's June 12th at 6pm at the AMF in Chicopee. The event site is here Bowling for Team Warrior Eddie! Everyone is invited so feel free to come along! Just email us and let us know whose coming so we can reserve a lane! Also, if you haven't seen the walk website it's here Walk and Roll all are welcome to come walk (or roll) with us!

Wednesday, May 23, 2012

We're back!!!

Well we have been very very busy lately! We have moved to a new apartment and have been nuts packing and moving and unpacking. We are finally all almost over that darn cold we had except for baby Eddie who just has a little bit of a cough left.

Earlier this week we noticed that his shunt seemed to be much lower than before. It even slides up really high sometimes depending on how he's laying on it. So I called the neuro just to have him check it out. Sure enough he said it seems to have slipped about 2cm down. He is scheduling an MRI in the next week or so just to make sure all is ok. He said he sutured the shunt to the tissue so it shouldn't have moved and he also said just in case he left about an extra 7cm of tubing into the ventricles. So hopefully all is well but the MRI will tell us more. Good signs are that his soft spot is still looking great (no swelling) and so is his back. A big downside of the MRI is they have to sedate him which isn't much fun. As long as there is a good outcome it's worth it.

That's about it for tonight, I'm totally beat from all the unpacking and organizing so I'm headed to bed. Have a great night all!

Wednesday, May 9, 2012

Hello again doctor!

Another day another doctors visit. At least that is what it seems like lately. My pedi must love us, I think I've single handedly paid his mortgage this month. We visited 4 times in a month. Yes 4 times! We had Eddie's check up, then we visited for a checkup of Bella's feet. Recently I've noticed she has been walking a little pigeon toed and both her ankles roll inwards. The side of her foot actually hit the floor in canvass shoes. She's also been complaining of leg pain. At first I thought maybe I was over exaggerating since I spend so much time staring at baby Eddie's feet. Unfortunately I was right. Her feet or ankles are rolling in so we had to go get her some "good" shoes (we choose a pair of adorable Keen's since they can be worn as sneakers or sandals) also they decided in a few months they'll check her again and probably refer her to Shriners. So..... Shriners did ya miss us? At least we know how to get there.

That was last week, a few days later while we were packing and the baby started fussing so I grabbed him and while holding him noticed he was stinky. Then the craziness began. Both baby Eddie and I were covered in poop! YUCK! When I went to change him I noticed this huge welt on his thigh. It was a big white diamond shape and red all around it. I freaked out and called the doctor. Their guess was a latex reaction.
The next day we noticed it was almost secreting something. Like a sore. I've never seen an allergic reaction like that so back to the doctors we went. Surprisingly this new sore like reaction only confirmed a latex reaction. So I've spent the past couple of days researching latex and racking my brain trying to figure out how he came in contact with it. Finally today I think I figured it out. All this duct tape while packing is all latex adhesive. I could have easily ripped a piece then touched him or even airborne. My poor kiddo.

Good thing is this gross cold is slowly making its way out of this house. I'm thinking once the sun comes out this weekend we'll all feel much better. I'm thinking a giant pancake breakfast is in order! I can't wait!

On a side note, I just want to thank the amazing support group we've had. Everyone from family to friends to even friends of family and friends. I feel like we are lucky beyond words and are so grateful for everything you have all done! I was looking at our new family portrait I had framed for the new house and both Eddie and I noticed that it seems so perfect. That's because we're so complete. I see our little family and feel so complete and at peace. I've never been happier or more grateful for what is in my life. It's been a very difficult road for Eddie and I even before the babies diagnosis, I feel like we couldn't be stronger. This is thanks to everyone whose been there through it all. Thank you!

Thursday, May 3, 2012

1,2,3 breathe!

What a week! We've had everything from anxiety to sighs of relief to excitement to exhaustion! Which all in itself is EXHAUSTING!

Let's see, where to start well anxiety... Last week Eddie had an interview for a new position, it's exactly what he wants to do for a career and the perfect position for him. It's in CT but that's ok we can make that work.

We had a sigh of relief when we saw the babies tiny ventricles on the ultrasound (see last post) and a bigger sigh when we spoke to the neuro a d he gave us a green light to relax! No ultrasounds for 6 months or neuro visits unless something changes. We'll have a baseline MRI done then. I can't believe that things are calming down so much. 6 months ago I could never have imagined weeks with no appointments and a day without having to look over my shoulder. I'm now feeling like its easier to breathe. (I'm sure that some of that is thanks to baby Eddie sleeping through the night most nights!)

We are very excited since an apartment we've been really interested is officially ours! It's so perfect for us and accommodates our family perfectly. It's even really accessible in case we say a while and little Eddie has assistance devices. We're moving in really soon so the next couple of weeks will be full of packing!

We've also signed up to be a part of the Spina Bifida Association of Greater New England's "Walk and Roll" on June 16th. We are excited to participate in such a great organization. Check out our team page and please consider walking with us or donating.

Now to the exhaustion! Bella had been sick with a cold which has been no fun at all! Tonight she seems to be feeling a bit better but unfortunately baby Eddie seems to have caught it. I guess I'm lucky that he's gotten this far in cold season without catching one but I'm very freaked out about him getting sick and having the shunt. Inside I know that a cold is just a cold but this being the first time I'm a bit nervous. So between that and waiting to hear about the job for Eddie I'm all anxious again. Geez!

I'm learning through all of these trials and tribulations that I can't control all things and to just sit back, relax and let the universe guide us.

Saturday, April 28, 2012

Everybody's a clown!

Last night we headed to the Circus! As much as I carry an absolute detest of the circus from the clowns to the stinky animals, this time was actually a ton of fun!  We all went, even baby Eddie hung out in the Moby wrap enjoying the lights.  My brother Ross came too!  Bella seemed to really enjoy it even while acting her "too mature" self.  Saying things like "I am NOT going to ride on those animals!" or answering my brothers question to get her a toy with her hand up and a "not right now"  sometimes I wonder if she's 4 or 40.  The circus is put on by the Melha Shriner's who happen to be our local Shriner's from the Springfield Shriner's Hospital for Children.  Most ridiculous moment of the night was when they started and were explaining what Shriner's does and where the money goes to.  Then they announce the man who happens to be baby Eddie's Shriner's sponsor. My hormonal mommy self couldn't keep the tears back.  (I'm not sure how much longer I can use the hormone excuse).  Eddie basically just gave me the "you're ridiculous" look!  I pulled it together though and enjoyed the show.

Thursday baby Eddie had his monthly head ultrasound.  As I sat there watching the tech scan I actually crossed my fingers behind my back. I'm not sure why I know he's been doing great, but just like every ultrasound when we were pregnant it is very nerve racking.  Hopefully these ultrasounds and MRI's get easier! I watched her measure and saw the little points and they were so close about this far * * I got so excited! I've never seen his ventricles that small not even in utero.  When I pointed that out she said they were so small she had trouble getting a measurement.. BTW this is a big YAY! We meet with the neurosurgeon on Monday so I'm real excited to hear what he has to say about our little warrior!

Wednesday, April 18, 2012


So Monday we had our 2 month check up and it was perfect!  Baby Eddie is now 11.8lbs! I can't believe he went from 5th percentile to 50th percentile! I'm so proud of my little piggy.  The doctor said his head circumference is perfect which is awesome to hear since babies with hydro tend to have smaller or bigger HC than other babies. He is also 50th percentile for height too! So all in all he's perfectly average!  I never thought I'd be so excited to hear the words average! 

The last couple days have been awesome and MUCH needed!  I work as a booking agent and was able to book my artist at Mohegan Sun Casino last night and was lucky enough to get a free room for the night!  Eddie and I were also lucky enough to get babysitters for both kids!  My awesome grandmother took Bella overnight and my very brave and very awesome best friend took baby Eddie! I say brave since she already has a 6 month old! I think she was nuts but there is no way I'm looking a gift horse in the mouth! We headed down there yesterday afternoon and had a fun, long and silly drive down the CT.  After getting situated and doing a little work we got a chance to meet up with my parents and gamble a bit!  We then grabbed a bite to eat and headed to the venue.  The show was AMAZING! It was very cool to see the show and carry around our little back stage passes, I kept telling Eddie he was my body guard.  Eddie and I had a blast and honestly spent the whole night giggling and acting like newlyweds.  We realized how much we've missed each other.  We see each other everyday but with him working 2 jobs and me busy all day with the kids.  If we have any time together it's discussing the kids or sleeping.  We haven't had much one on one time together.  It was awesome! We headed back to the room to get a much needed awesome night of sleep. We had another awesome day today there and headed back to see out babies early afternoon! Boy did I miss them! Who knew one day would be all it took for me to miss them.  It was much needed though.  I hope we can get a chance to do more date nights soon! We need them. 

So all in all a great week and I feel more grateful for this perfect and amazing family that I have! They inspire me and make me want to be a great mom/wife/daughter!

Monday, April 9, 2012

Defying Gravity.....

We've had another great week and a great Easter weekend with family! This week we got the urology ultrasound results back and to our surprise they came back perfect! When we were pregnant and even in the hospital we were told even with the best odds our little guy would probably need to have a catheter.  This is because his lesion is so low that they said it almost always affects the nerves to the bladder and bowel.  So we expected that he may not be voiding his bladder completely and they would see some backing up into his kidneys on the ultrasound. Nope! Not this little guy, he's defying all the odds!  Also, today was his early intervention assessment where they score him on his development.  There's not a ton to score on since he's so little but he passed with no developmental delays and even excelled on gross motor skills! They will still come a few times a month to work with him and more if he starts to fall behind milestones.  For now though he's doing great! Take that SB!!  We're not out of the woods, we won't ever be completely out of the woods but I'll take every good news as a sign that no one better tell my little Eddie he can't or won't do anything.  He'll show you!  While sitting and decompressing the past few weeks today I thought of a song from the musical Wicked called "Defying Gravity", here's a verse from it;

'I'm through accepting limits
cause someone says they're so
some things I cannot change 
but till I try, I'll never know!'

From in the womb my little guy was defying the odds.  When they told us his hydro would only get much worse and then it got less and less and then none until 3 weeks after birth.  Or when they told us his clubbed foot and  bowed legs were really bad at the hospital and now they have almost done a 180.  We know that he still has obstacles but we also know that he's a fighter.  No matter what the outcome we are confident that he will take every obstacle with strength and courage and because we see that strength and courage in him we're following suit deciding to find that same strength and courage within ourselves! I firmly believe that this little man has strengthen the love in our marriage and has made us more solid than ever at a time when we needed it the most.

Happy Easter! Here's a couple more pics the first is my silly father and daughter with baby Eddie and the other is all four generations of Edward Harvey Gagnon's!

Wednesday, April 4, 2012

Getting back into the swing of things...

What a nice normal week we've had. I finally feel like we are slowly getting back to normal and getting to really enjoy our new expanded family.  After last weeks crazy amount of appointments this week has been a bit quieter. Monday baby Eddie finally had his circumcision done which in all honesty hurt big Eddie more than it hurt baby Eddie :).  I was a bit freaked out too but he did so good the nurse said he didn't even cry! 

Yesterday was such an amazing day! We woke up and realized that for the first time since baby Eddie was born we didn't have one appointment and big Eddie didn't have to work either job! So we took a page out of the Steve Gallant playbook. For those of you that don't know us Steve was my uncle who passed a few years ago.  He was well know for waking up and deciding to take a random road trip (even sometimes taking a "sick" day) which always ended up in a fun filled day! I know that my brother and I as well as his daughter remember those road trips as some of the most fun times in our lives.  At some point in the trip something crazy always happens where we end up giggling at the situation whither it be getting lost, forgetting something crucial to the trip or even blasting the radio and singing as goofy as we can.  So we got up yesterday morning as decided on a Steve trip! I was so excited I was like a kid, I kept saying "this is so awesome, I love this..." we headed up the pike and down to RI (I know that sounds like we went up to go down but here in MA you go "up" (east) the pike and then down to RI, it's not quiet as confusing as it sounds) we ended up at Roger Williams Park Zoo in Providence, RI. It was a blast and actually pretty inexpensive. I urge anyone whose in the area to check it out it's only a little over an hour drive from here. Check out their site here

Here's a picture of Bella with the giraffes, she spent the whole first part of the zoo saying "I hope there's giraffes I love them so much!!!!!"

After the park we headed to Dave and Busters in the Providence Place Mall.  Bella was so excited to eat (or not eat) and go play.  I think her exact words were "LOOK AT ALL THOSE GAMES!!"  It was a blast!

We then headed home with two very tired very overstimulated children and we all passed out! Baby Eddie even slept until 3am! All in all it was nothing short of an amazing and normal day where we could really take the time to appreciate our adorable and amazing family!

Today we're heading to the baby's urology ultrasound to make sure his bladder function is as good as they think it is and that nothing is backing up into his kidneys. Fingers crossed that all go perfect!

Tuesday, March 27, 2012

All clear..... For now!

Update time!! So Friday I got a bit freaked out since baby Eddie's fontanel seemed a little puffy and his shunt site was really puffy, plus he was really cranky that day. So I called the neuro and waited impatiently for 4 hours for him to call me back! Apparently it's normal for this to happen a little especially if he is fussy and crying a lot.  He assured me that it would go back down and he was sure that if the shunt was malfunctioning the CSF buildup would go to his back first. Which I've been told before but everything worries me lately.  He told us to bring him in on Monday just for a real quick check just to ease all of our minds. On Saturday our neuro happened to be eating at Eddie's restaurant and mentioned to him that he spoke to me (that's what Eddie says happened, I got the feeling though it sounded more like this, Neuro- "I spoke to your wife yesterday about the baby" Eddie- "Yeah, she's crazy...") By Monday it seemed much better and he agreed when we saw him at the office. He did assure me that I did the right thing and that we will probably be making a lot of these little "just check him" visits over the years. I think we're going to have quiet a relationship with our neuro, Eddie and him are even on a first name basis.. I can't quiet get used to calling our amazing neurosurgeon, Rob.

Today was his head ultrasound and for a minute almost a dramatic one.  All was going well until the end when the tech took a pic of the shunt in his head and underneath it typed "SHUNT ?" "?" What the hell is the question mark for??? Then she left the room and said she was going to get the doctor. WHAT?! The moment she left I started freaking out inside and even a bit on the outside. I think my exact words were what the hell is the question mark for? After what felt like forever the tech came back in with two doctors, not one but TWO!  I then asked out loud, "Is something wrong with the shunt?" to which the tech responded "I'm not allowed to answer that." What? Jesus! Then neither doctor said a word and after I finally got up from my chair and stood near him did he respond by telling us that everything looked great and his ventricles were beautiful. They just couldn't get a good picture of the shunt from where it was placed. JESUS! Way to keep us hanging. He did apologize probably because he saw the look on my face since I was feeling like I was about to wring his neck!  Needless to say everything was great! Thank goodness!

We then headed over to plastics to have his stitches removed from his back, FINALLY! 6 weeks later! I'm glad we waited though since it gave his back time heal fully after the horrible swelling thanks to the CSF.  His back looks amazing now that the stitches are out. I can't believe how good the scar is. Weird to say that but I've seen pictures of other babies scars and none look as good as his! Apparently we lucked out with an awesome neuro and an awesome plastics guy! So we have a little break from visits now to our clean bill of health. We see the pedi neurologists tomorrow and hopefully another all clear there too!

We also had our photos done again today. Our first family photo and baby Eddie's first "photo shoot"! The photographer Ian was so great! Got some amazing pics. Here are a couple we already get to see! The one of baby Eddie naked with his scars showing is my absolute favorite, reminds me of everything difficult and beautiful we've been through. It's amazing. To see more of Ian's work check out