Hi my name is Kristin and I'm really bad at updating!! PART 3

So continuing on! We had a follow up with the Neurosurgeon earlier this month and my little man did wonderful! Shunt looks great! Function is amazing! No follow ups for 6 months! I have a good feeling we're not going to be back in between either! Then came the Neurologists follow up. Again, he showed off and really impressed the doctor and nurses. Chatting away and flirting with those adorable eyes! Great news there too, no follow ups for............. drumroll please.........................ONE YEAR!!! YAY!!!

Now to present day, finally! Last night we headed to a caregiver night out for parents and caregivers of special needs families in the area. I was real hesitant to go. Sometimes I feel like we've been so lucky with how Eddie's been doing that we don't deserve to go to these things. I was so wrong though. I am really glad we went. We got to meet other families and I realized that there are so many resources that we will need as he gets older and faces more challenges. Plus I realized that today we may be doing so well but at any point things could change with a medically fragile kiddo. To look at Eddie he looks like every other one year old, but one infection or bump on the head in the wrong place, one missed cath or missed does of antibiotic could possibly bring a problem. One day he could have no pain and great function but he could grow too fast and get tethered spinal cord and need another surgery and could lose more function. Or we could never have any more major medical issues. We won't know but I'm glad that no matter what we've been through or will go through there is this support system of other parents out there that just get it. There's no pity party or "I'm so sorry's" We just get to talk about our triumphs and struggles and how cute our little ones are. Plus I've realized without this system we wouldn't have access to half the resources we do and therefore we wouldn't have the chance to fight as hard as we do for our little man!

So speaking of fighting for our little man. We are helping to organize a Walk and Roll in June here in Westfield, MA. All proceeds are going towards the Spina Bifida Association of Greater New England. The event is on June 15th, 2013 at Stanley Park in Westfield, MA our team is Team Warrior Eddie check out the website here; Team Warrior Eddie Walk N Roll to donate or join a team! We're also holding a bowling event to help support our team on May 4th, 2013 from 5:30-8:00pm at Shaker Bowl in East Longmeadow, MA. Tickets are $15.00! Check out Team Warrior Eddie's facebook page here; Team Warrior Eddie Facebook Page! We're selling T-shirts here; Team Warrior Eddie T-Shirt Orders  and bracelets also! We're very busy!!! Please help spread the word for the events! We'd love to get more teams signed up to walk also! If you're not from around the area check out local Walk N Roll's in your area!

This is the front and back of our bracelets for $2.00 each

Hi my name is Kristin and I'm really bad at updating!! PART 2

So February brought huge disappointments and big celebrations. In the disappointment field.......... The New England Patriots broke my heart once again! That's all I have to say about that! Celebration wise, Little Eddie's first birthday! It was great! The weekend before his birthday brought a huge snowstorm and while we were snowed in all weekend Eddie spotted a bottle that rolled under the coffee table and army crawled towards it! FINALLY!!! Forward motion! I was seriously beginning to thing we'd never see that day! Saturday following his birthday we had a big birthday party with friends and family at a local pizza shop perfectly names "The Pizza Shoppe" we decorated it all up with a duck theme since every time he sees a duck he gets super excited and quacks! Plus before he was born for months Bella insisted on calling him Ducky Eddie, thank god that didn't stick! Eddie had a ton of fun he ate a TON and attacked the cake like we would never give him cake again!

Full of cake!

The next celebration was a HUGE one and a HUGE surprise! As our anniversary approached Eddie asked if I'd mind going to some thing at his work. Apparently they needed people to come take photos while dining for the menus and website. Looking back the story seems weird but at the time I just was annoyed that we were doing a "work" thing on our anniversary. That even though it was a free meal at a nice restaurant it was still one where I had to take photos (which I hate) and it was his restaurant with all his friends. I figured he'd be socializing the whole time. I wasn't thrilled about the idea but he seemed excited and wanted to buy me a new dress and everything. So I went with it. Probably with some attitude but I went with it. That night we got all dressed up and headed out. When we showed up we walked in and my friend Ian who does all our family photos was there snapping photos. I instantly thought this was weird but he looked surprised too and said they had hired him. I figured that Eddie had referred him. Next we sat at the bar where there was two champagne glasses ready. I thought this was weird too but Eddie said he asked them to do it for our anniversary. Again, I didn't really question. I was pretty nervous to do the whole photo thing anyways. Eddie got pulled away and as I was sitting waiting for him to come back and I feel a tap on my shoulder. I turned around and who was it.......... my DAD! Ready with a corsage and said he was there to walk me down the aisle for the first time! I was so surprised!

A little back story quick is that Eddie and I got married in Tennessee right after Bella was born. We were engaged and planning on having a wedding in Massachusetts at some point but I was running out of health insurance so we thought what the heck we'll get married here in TN and then plan something back home in the summer. Well that never happened since we spent all of our money moving back home instead of visiting and lets just say that the whole getting eloped thing isn't all it's cracked up to be. We didn't realize you actually say vows there we thought we'd get a piece of paper signed and be married. Not exactly! While I was dressed in my best over-sized comfy sweats and my hair in a beautiful not washed messy bun. A one month old Annabella in tow in a car seat we said vows in front of the town clerk and whomever was in the clerk library at the time. It was so romantic! Ever since we've talked about renewing our vows. Even more since not long after we moved home Eddie and I took about a year and a half seperation. Divorce seemed inevitable. Then one day we just figured it out. It took a lot of hard work and even more forgiving on both sides. We finally managed to get to a good place. Maybe a better one than before. Than our little warrior came along and at a time that most marriages would struggle ours seemed to triumph. Don't get me wrong we've had many many hills throughout the road but we've had many more amazing trips.


 So back to the dinner, as I stumbled my way to the door to the side room and tried my best to regain my control.  I don't think I did too well. As the door was opened I saw a room full of friends and family waiting, rose pedals on the floor and my super handsome husband waiting at the other end of the room. It was awesome! Ian my photographer friend (by the way check him out at www.nemesisphoto.com) was there taking photos of everything! We even had an officiant and it was a very close family friend who I've always wanted to officiate our wedding. As I stood up there listening to the wonderful and perfect words he had I remember one thing most, in between shaking and thinking I may pass out that this couldn't be more perfect! Something I stated many many many times that night! Then Eddie said some amazing vows. I was so taken aback by the smooth and amazing words coming out of his mouth. I couldn't take my eyes off of him. This was a moment that I am having trouble explaining. I've watched a lot of friends and family get married and as wonderful as it is I always think, "how can they tune everything else out like that" Now I get it. Something happens, you just do. After lots of hellos and hugs I sat down at the wonderful table. Everything was so beautifully decorated and there was even borrowed, blue, old and new items and a amazing cake designed and made by a friend and even a garder and bouquet. I couldn't have picked better decorations. Thank god for Pinterest since my family stalked my Pinterest pages and found everything I loved! The night was so perfect! Every once and a while I sit and think about it and think WOW, did that really happen?  I've never felt more married and I have never been happier! 

Amazing photo Ian at Nemesis Photo took

Me and Daddy

 

Hi my name is Kristin and I'm really bad at updating!! PART 1

I won't even apologize for not updating. Plus worst part is so much has happened. So this may be a multi-parter this week. So let's start from where we left off! So after the last time we "spoke" we started what I like to call the two months of craziness! Everyone's been taking turns getting sick. The end of January marked Annabella's birthday so we had a big party for her at the bowling alley and it was a huge success! She had a blast with all of her friends! She invited all of her "boyfriends" from school and was quite the 'teenager" the entire time! Wow, what am I going to do when she finally is a teenager? I'm thinking boarding school.

Bella and her two boyfriends!

Later that week we headed to Shriners to pick up Eddie's AFO's (ankle foot orthotics), which by the way are totally adorable! He immediately found his comfort zone and became much more stable with them on while he was on his feet. Obviously he has to hold to hang on but he is way less wobbly. 

Eddie's new AFO's

Then on Wednesday we headed out to Boston Children's to have Eddie's re-do of his urodynamics done.  We were pretty nervous since the last one we had done here was so traumatic for both little Eddie and myself.  Much to our surprise it was so much easier! They had way more staff on hand, an Elmo movie for Eddie to watch and it was as calm as possible.  They even were able to add an extra test that Shriners didn't have access too which was reassuring to us that we were in the right place.  The urodynamics confirmed the diagnosis of Neurogenic bladder with reflux to his right kidney, but they decided that it was a very tiny amount of reflux. This means we are back to cathing 4x a day and back on the Ditropan but at a lesser dose. Which by the way makes a huge difference as far as bladder output. With the old dosage his bladder wasn't quite right.  We are also back on the antibiotic every night forever which I'm not quite sure I'm ok with but I'm leaving it be for now. I figure let's get through all this other stuff and address it down the line. The neurological test that was also done was the most exciting part. Well the results were, if you ask big Eddie it was the most traumatizing part for him. Since the probe for the test is a large needle placed in between that "nether" region. Let's just say that big Eddie turned very pale and almost passed out. We actually had to switch places so he couldn't see. Poor daddy! Good news is little Eddie has no feeling there so he didn't feel a thing. It hurt daddy WAY more! Bad news is, little Eddie has no feeling there. As for the results, it gave the neurologist there an exact lesion level unlike the guesstimate that Shriners were able to make. It came back at S2S3 but with less damage than expected. This means that the damage goes up to S2 but that even that damage isn't so bad. If you asked me before I would have told you this too, I am with him everyday and see what he can do. These doctors are going to be surprised when he shows them! I'm not just saying this because I'm his mom and I think he can do anything (which he can) but he really can do more than they think. I've seen it!

Tomorrow I'll post part two so don't change that channel!!!!!!

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!