What an amazing week!!!

WOW!!! What an amazing week we've had! First we headed to Boston Children's Waltham to talk with the Orthopedic surgeon there Dr. Karlin. What a giant sigh of relief he was! I had heard that some families didn't exactly feel comfortable with him since he's very dry. So I was a bit nervous but he was exactly what I needed! We've had our share of conversations with doctors and I have learned that the drier and more laid back they are the smarter they seem to be! I am the type of person that doesn't want a doctor to comfort me I want one who is there to work.  I mean a warm personality is nice but I get it. These doctors are the best in the country for a reason! So, he sent us down for some x-rays to make sure his pelvis and hip as well as his spine all looked great!  The x-ray tech was awesome! He had me giggling the entire time and was so good with my little drama queen Eddie who wanted nothing to do with being told where to stand or lay! Thanks to the wonderful world of SB my little man started crying the minute we got his diaper off and then proceeded to poop and pee all over the room. UGH that was fun! Thank god for the giant metal vest they make you wear or I would have been mad I didn't bring an extra set of clothes! Thankfully after all was done they gave him a wonderfully annoying squeaky toy to squeeze for the rest of the morning! Sorry to any other patients that got to listen to it throughout the hospital! Once we were back upstairs we met up with Dr. Karlin again to go over the x-rays. His pelvis and hips looked awesome as well as his spine! YAY! He said even his right leg is looking great and he doesn't feel like he has much more torsion than most kids his age. Plus, even though his left leg has significant torsion his ankle and foot seem to be OK and inline. This is great news! As Dr. Karlin put it if you have to have something wrong this is what you want. (Funny this is the same sentence we heard when we had the ultrasound with the Maternal Fetal Specialists) He explained that if it's needed it's a simple surgery of breaking the bones and resetting them in the correct places. The only thing is we would need to wait, doing this too early could damage the growth plates or the torsion could come back if we do the surgery before we know how his muscles work completely. Positive news was that he thinks that he's doing so well getting up on his feet and even trying to cruise that his pretty confident that he may start walking without any intervention. He even agreed that bracing wasn't necessary at the moment. He seems to be a very strong advocate for letting these kids do as much as they can and develop as much as they can before intervening. This is so exciting to me since Shriner's ideal is a bit different. They were more pro bracing and such.  Not to say that's a bad thing, it just wasn't right for us.

Also this week was our big celebrity appearances! Monday we were on a local morning show called Mass Appeal promoting our local Walk N Roll for Spina Bifida. Ugh, I was a nervous mess. As much as I don't want to share it with you, I'm going to since the point of this blog is to share our ups and downs! So here it is! By the way, little man was quite the TV star! Thank god since thanks to his scene stealing no one was listening to my nervous rambling!

Then on Wednesday we were on a local radio morning show The Bax and O'Brien Show on Rock 102.1. That was much easier and I sounded so much better! Too bad I can't post the link to that on here! If your a Rock 102 member on their website www.rock102.com you can hear it. It's the June 12th show and we come on 4:50 min before the end of the full show. They've been running our PSA's and even posted it on their website Saturday morning!

We were so confident we'd have a great time on Saturday but had no idea how well the walk would turn out! It really exceeded our expectations! I don't have count of registrants for that morning yet but I know that we had about 90 online registrants and so many people registering that morning that we had to push the walk start back almost an hour! There was a steady stream of people at that table starting right at 9am! If was awesome! Our band sounded great and the energy was amazing! I can't wait to see how much money we raised in Western MA! Plus the SBAGNE as a whole raised over $90,000 as of that morning and that doesn't count all the money that came in at all three walks since Friday night! Their original goal was $70,000 and last year they raised about $60,000! This is record breaking for us!

I was so grateful to see the amazing support for our team! We had so many people there to support Team Warrior Eddie! Sometimes I look back to where we were over a year ago and I remember sitting crying with Eddie wondering what we would do. If we'd have a support system. Well, wow have I been blow away but the friends and family we have. Not to mention the very special group of families we've met since starting this journey. There's this special bond you form with other parents with a "special needs" child. As unbelievably grateful I am to have amazing friends and family support, sometimes only those other parents get what it feels like to go through those hard days. They are the only ones who get what it's like to cry those heartbreaking tears that come with a "diagnosis". It's funny we all have a different "diagnosis" but we can all relate better than anyone else! The looks we give each other when a parent with a child with no diagnosis says something like "Ugh, my child doesn't like to eat anything!" We just need to look at each other and we're silently saying "Oh yea, must be tough! Our child doesn't have the muscle tone to swallow!" "Shut up!" Or when a stranger randomly comes over and tickles one of our kids and we all are on the attack because the child on the Autism spectrum doesn't do good with spacial issues and touching! We become a pack of momma wolves! Watch out!!! We'll now I've started rambling again. Here are some pictures of the day (Brought to you by Blue Glass Photography! She did an amazing job!!!)

Team Warrior Eddie!!!

The Western Mass Warriors with our little Warrior!

"Little" Warrior Eddie and "Big" Eddie!

I'm so proud of how it all came out and so glad I had my partners in crime my mother and my fellow SB warrior momma Ashley! Plus, we were so lucky to have two board members come out to help us out and they maned that Registration table like nobody's business! Thank goodness for them because without them I think the three of us would have been a big ole stressful mess! Plus, we were so lucky to have family and friends volunteering their time to help out with games and face painting and raffle tables, as well as set up and take down! It all went so smoothly! I'm sure I'm forgetting to tell you guys a ton but there will be more to come! I'll hopefully soon be blogging about a new catheter program! Which is exciting in this household because we could really use a new cath direction! Something easier and less wasteful! We know that the easier it can be the easier to train others!

So stay tuned!!!!!!!!!!!!!

TAKE THAT SPINA BIFIDA!!!

I want to share with you the big milestones we've had!! It's been slow going with the whole standing up thing. It was very de ja vu like and reminded me of our whole crawling expedition. Finally he started standing up at things here and there and climbing on everything! Problem was the standing thing was here and there and he didn't always like it. Then he really wanted to walk. He was constantly putting his hands in the air and saying "walk, walk!" Problem is, he doesn't know how to walk! This made for a very annoyed little Eddie. Because he was so interested in walking Eddie and I started brainstorming on how we could help him out. We saw on Facebook that another family built their child a set of parallel bars out of PVC pipes. So of course I went to work nagging Eddie to build a set! I thought for sure little Eddie would be walking with it in no time. Well, not quite! He hates them, not that that is going to stop me from encouraging him to use them every day! He hasn't really walked on them but he will! Trust me! Here's a picture of the set Eddie put together for him! 

So just when I was starting to get concerned that he wasn't gonna get it. I started mentioning to his therapists that I was concerned by the fact that he still wasn't getting the rolling over thing or the sitting thing and all that when they kept telling me there was probably nothing to worry about and that because of his thin corpus callosum he may have trouble connecting certain things, but that with all of our therapy and exercises his brain would rewire eventually and he'd get it. I totally trust our therapists but I have to say as a mother it can be tough sometimes watching your little one struggle with things that are easy for his peers. Watching parents not even notice things like crawling to sitting, and for us watching our little guy get so frustrated because his brain just can't figure it out. Most days we go out and people don't see anything wrong with Eddie except for a kid whose maybe "lazy" at walking. People say things like "Oh he''ll get it, he's just a lazy walker. Lots of kids are." Or people compare him to their kids or grand kids saying "Oh my little guy was like that too, he'll just get up and run!" Or sometimes I get the opposite end of the spectrum, people say things when others ask if he's walking yet like "oh no, he can't walk, his legs don't work good." I know that neither one of these situations are meant to insult but for some reason both hurt a little. I either want to yell, "HE'S NOT LAZY HIS BRAIN IS JUST CATCHING UP!" or I want to yell, "HIS LEGS ARE FINE HE'LL WALK WHEN HE'S READY!!" Either way I want to tell them to "LEAVE HIM ALONE!!" I understand though, that there is so much focus on milestones. I get at least two emails a week telling me what milestone my 15 month old should be at. What he's doing. I now just delete these emails because they just upset me. They make me doubt myself as a parent. So I say, "screw you milestone emails, back off!" 

So just when I was getting frustrated and doubting myself he surprised me again! This morning we Bella, little Eddie and I were playing in the living room and Eddie stood up at the couch like he usually does while I'm sitting there and said "Hug, Hug" he started inching toward me so I moved away, to my surprise he started stepping side to side inching closer! I was so excited! Movement to another parent is exciting but to a special needs parent like us it's miraculous! There's no way to explain it in words. Only other special needs parents understand that feeling. To make it all better about 10 minutes later him and Bella we playing on the floor and I looked down and Bella yelled "Hey Mom! He just sat up!" I didn't realize what she meant until I remembered that he was crawling just before that and now he was sitting. You have to understand that it took forever for him to get sitting to crawling and he still hadn't figured out how to get back into sitting. It was so exciting!! (by the way he's now done it like a hundred times!) THEN, about ten minutes later I had him on the floor on his back tickling him when he rolled right over to his belly! Something he hasn't done since he was like 7 months old! Such an exciting day!

So all I have to say is TAKE THAT SPINA BIFIDA!

 

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!