Thursday, March 28, 2013

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

Tuesday, March 19, 2013

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 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

Saturday, March 16, 2013

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!!!!!!