SB Clinic Day

So we weren't scheduled for a clinic day at Shriners until March but the best part of living 3 minutes away from Shriners is if I freak out about something I can just call! So the past month little Eddie's left foot seemed to turn in. Actually more the shin then the foot but it gives the appearance of his foot turning so far to the right it can sometimes end up flush with the floor. So I mentioned it to his PT who also agreed that it had changed. So I decided to call and make an appointment earlier than March. We headed out to Shriners Friday and we were so lucky that Eddie's PT was able to come with us. I was glad to have her there to help explain everything and thank goodness she came since Eddie couldn't make it and those appointments are hours long and the baby was getting restless. (Well as restless as he ever gets which isn't too much). So after lots of doctors checked him out here's what we came up with.

First the ortho and pt consulted with our pt and decided that instead of his lesion being all sacral they all agree now that it is more like L4L5. All this means is that the nerve damage is a little higher up than they originally thought. A first I'll be honest that it felt like a little blow when I heard this. Then I realized that what we knew of his sensation and muscle damage was exactly what L4L5 looks like. So nothing really changed for us except the fact that we didn't know exactly what sacral meant. From what it sounds like he was born with a small sacral lesion but we knew it was tethered higher up so the thought is that due to detethering some nerve damage was done which is totally normal during detethering. The nerves get stretched and sometimes sensation can be lost. Ugh, sorry for all the medical info.

Now to explain why his leg is turning in. So the nerves to the muscles on the outside and back of his leg don't fire correctly. This in turn makes the inside muscles too tight therefore pulling his leg/foot in. We have continued to work with stretching it but due to my super strong and wiggly little man his muscle is getting super strong. That's why we've seen more pulling. So the solution is a device called the Denis Browne Bar. They are shoes attached to a bar that can be adjusted to an angle to stretch his legs/feet apart. It sounds way worse than it is. It doesn't hurt him and actually isn't that angled for him. He is set for a 45 degree angle which is apparently nothing compared to kids with clubbed feet who can be at a 70 degree angle. He actually looks cute in it and doesn't mind it at all. I think he actually likes it since it helps him get on all fours! The worst thing about it is while putting it on I almost always get whacked in the face. When I do and I will I'm going to have a big bruise! So don't be alarmed if I'm walking around with a black eye. He only wears it when he sleeps at nap time and bed time.



Next we got fitted for AFO's (ankle foot orthotics) these will help keep his feet at more of a 90 degree angle when standing. Now his feet pull up so he stands on his heels. Due to lack of nerves to his heel cords this will stay this way and won't get better on its own. It could get worse and most likely will and at that point he will need cord release surgery where they cut the heel cord. We want to avoid this as much ad possible since it will leave him with a floppy foot. He'll get the AFO's in a couple weeks and will only wear then when weight bearing and standing. I'm kind of excited since he has trouble with stability from standing on his heels. I'm curious to see how he does. Plus they are very cute and we even got to pick a cool design for them. ( it's a secret for now we didn't tell Daddy what they look like). So you will all have to wait to see them!

All in all it was a great visit. I was a little emotional after and I'm not sure why. We didn't hear anything we didn't already know but sometimes these appointments just emotionally overwhelm you. It's almost impossible to explain. It's one of those just have to be there things. I know that a horrible excuse but I really have no idea.

We don't have anything else going on until the 29th so I'm sure I'll have lots after that between visits and birthdays! Stay tuned!!!

Phew, 2012 is gone and 2013 is here!

What an exciting holiday season! So on the moving front here's the news......................... Wait for it....................... STILL NOT CRAWLING!!! Hahahaha Although we're still not crawling we are making some sort of movement. Sliding backwards and in circles. That's about it. Either way I'll take it as long as that means one day we're crawling! So here's our holiday recap!

Thanksgiving- We had a great time with the whole family! My whole side came over here to celebrate and we ate and ate and ate. It was awesome! I sat back at one point and looked around and thought WOW, this is so great! I'm so blessed!

NYC-  A couple of days after Thanksgiving we headed out to NYC! What a buildup! I have never kept such a secret in my life! Here's the video of the reveal;

She was such a trooper, she made it the whole day walking around in the cold without much complaining. We even made it to most of her "stops" American Girl, FAO, M&M, Rockerfeller Center, it was great! Bella also got a surprise at Christmas, tickets to go see Annie on Broadway in NYC. So we're going to head out there in the spring and probably stay overnight! It was so nice to do something just for her. Most of this year has been kind of centered on the baby and she's been such a good big sister. She deserved it!

December was mostly filled with colds, flus and stomach bugs! It sucked! First I got a stomach bug. Then Bella got it times 10! We don't need to go into details but it was a MESS! Then started the cold/flu Bella started it and the rest of us followed! The baby and I are still at the tail end. 

Eddie got his first haircut this month and it was so hard to do. I loved all that hair, but he couldn't see anything! So haircut it was and let me say he was quite the handsome little man. Don't you think?

Not happy!

So handsome!

Christmas was wonderful! Full of family and friends new and old! My house is so filled with toys it's insane! This place looks like a daycare on steroids! Although I'm sure anyone with kids has this same problem after Christmas.  Again, took a moment to look around and thought, WOW, so blessed!!

New Years was completely awesome! Eddie and I were able to get a dressed up and go out for New Years! We had so much fun. At the end of the night (well this morning really since last night we weren't really in the reflection state of mind) I realized that it wasn't so awesome for any particular reason I mean we had fun with everyone but it was just so nice to really relax and enjoy each other. Every year our love gets better and better. We've had a few really bad years but this one was the complete opposite.  We have found so much love and respect for each other. We still have a lot of work to do in our marriage but realize that marriage is work. Not tough I hate this job work but the kind of work you love and even when it's hard you think, that's okay tomorrow will be a better day here! So I don't really have one resolution but there is a lot I want to do this year, 1. Make sure that I spend more time with those friends and family that I keep saying "we'll do lunch soon!" or "we'll get together really soon!" 2. Try everything! Even if it scares me! 3. Find my passion! I'd like to start writing. Really write, even possibly make money doing it. I love it and always have. and finally 4. Soak up and appreciate everything around me! This life is awesome!

Happy New Year Everyone!

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!

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!

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!

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 - http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm

Folic Acid - http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277069/k.21A2/Folic_Acid.htm

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!!!!!!)