HAPPY BIRTHDAY!!!!!

Today brings a ton of emotions. Birthdays for both my kids are special. But when you spend months pregnant being told so much about what your child would and wouldn't be. Birthday's mean even more. They mean another year watching my little man prove all those doctors wrong. Even the little milestones are huge! This birthday is a big deal too because after 3 years of having the support of my EI family we are officially leaving them. It's been a nice safety net knowing that those therapists are there with just a text or phone call, no matter what time of day.... or night. Moving EI's when Eddie was only a few months old was the best decision I've ever made. I've gotten to meet some of the best Imperfect Mommas and some forever friends. I never thought 3 years ago while waiting for my little man to get out of a 10 hour life threatening surgery that we'd be here. Living a normal life with a extraordinary pre-schooler. I can't wait to see what this year brings!!!

Happiest Place on Earth!

The saying is true, Disneyland is definitely the happiest place on earth. At least for us it was. We made sure we were financially ok for the trip, had no kiddos with us (which meant no meltdowns for an entire week, other than the ones we had around day 5) and everyone everywhere is smiling!

We started off conference at the Disneyland Hotel in Anaheim, CA. Want an adorable place. Every time we walked out of our hotel room there was princess music playing in the background. Needless to say, I was in heaven. Bouncing around singing "Someday my prince will come" all over the place. We spent the first few days in conference and learned a ton of information. I can't explain how appreciative we were to get the wealth of knowledge from those workshops. Every time we go to a conference I leave wishing I could do this for the rest of my life. Learning and teaching. We even learned a lot about some steps to help Bella at home and at school. Funny, in our special needs world we call other kids the "typical" ones. In our world Eddie is more of the typical one. So a lot of times Bella seems "non typical".  Simple things that seem normal for other families are almost foreign to us. Almost to the point where you're looking for a diagnosis for age appropriate things since you spend all day focused on development. I wonder if any other parents of "typical and non typical" kids feel this way. (By the way I hate the term "typical or "non typical" but I use them for lack of a better term, feel free to edit a better one in there).

So, back to conference. We met some great families and really felt connected. SB is so rare around here we don't always get to talk to others that are in our shoes. It's not like Autism or Down Syndrome where there are support groups everywhere. SB is somewhat of a tiny community. I will say the one thing that I was a bit disappointed of was that the vendors we're lacking in variety. It was mainly catheter companies or catheter suppliers. I would have really liked to learn more about assisted devices and orthotics that are out there to choose from. I feel like every conference we've gone to from SB conferences to the Abilities Expo. There was a lot about chairs and catheters and less for the more mobile kids that also need some assisted devices. I'm also very very interested in learning more about companion dogs, I think one would be great from Eddie. Something to make him more motivated to be independent and stay on his feet more and on his knee less. Especially once school starts.

Our hotel was right on Downtown Disney so we spent a lot of free time down there. We also had a wonderful pool to hang by. Most nights we were so beat we were in bed by 9:00. Wednesday was the day that I got to speak with Hollister. I was really excited mainly because I was going to be able to see the video we made in Chicago for the first time. It went good. Not as many people as I think they expected but the video turned out great and we even made it into the handout. Little Eddie turned out adorable! I spoke briefly about my experience with Secure Start and our family and answered a few questions. There were some health care professionals and I feel like it may be a good resource to hear a parent's perspective on things. Most of the workshops we went to were always healthcare professionals or parents that are also healthcare professionals. I would love to give people a chance to hear from a parents perspective. I may not be an "expert" but in some ways I am more than they know.

The video is here at Hollister's website. Please check it out. Secure Start is awesome and is for everyone. You don't even have to be a customer to take advantage of it.

https://www.hollisterpeoplefirst.com/securestart

After all of that on Wednesday we snuck into California Adventure which was a part of Disneyland. We had a lot of fun there! It was super hot but we managed to keep cool. The lines we're too bad so we got a chance to see everything we wanted and acted like total kids! We did all the kiddie rides and the big "kid" rides. Thursday we got up early and went into Disneyland. This was the day of the trip I had been waiting for. I am a huge kid at heart if you didn't already know. When we walked in at the opening of the day everyone was on the street giving Mickey gloved high fives. It was awesome! We flew through all the great rides and barely waited in any lines. Some rides the trip through the empty lines was longer than the actual line itself.

Friday and Saturday we headed into LA to meet up with a friend of mine from back home. He's a singer songwriter who headed to LA recently. It was awesome to have lunch with him and catch up. We tried to then drive up the Pacific Coast Highway and see some of the coast but we forgot it was 4th of July and the beaches were insane. You couldn't drive anywhere. So unfortunately we didn't dip our toes in the Pacific Coast. Oh well, maybe next time! Friday night we got to go to dinner with my cousin Phil and his beautiful wife Stacey. Eddie was dying to have good Mexican food and where else do you get that but in SoCal. My cousin was so nice to let us crash at their house Friday night and we stayed up chatting for a while that night catching up! Saturday morning we woke up slowly (we slept in later than I think we have ever!) and headed into LA. We did the usual "LA Sightseeing" stuff and then drove around the Hollywood Hills a bit to look at all the homes we'll never be able to afford. I have come to the realization that Cali is amazing and I may have to live there one day. I can't wait to go back and see more of the awesome state. I'd love to see some of Northern California!

We feel so lucky lately to have these great opportunities to travel to places we would never have otherwise. We've been blessed with such great family and friends that take our kids in so we can explore this awesome country and learn as much as we can for our kiddos. These kids mean so much to us and if it weren't for them we wouldn't be the people we are today. They've given us more then they'll ever know.

California Bound!

Here we are at the airport headed for sunny LA! I'm so pumped! In case you haven't been following, we are headed to Anaheim,CA for the National Spina Bifida Conference. We are so excited to go. It's just Big Eddie and I and we are leaving the kids behind with some amazing famiy and friends for the whole week. This is the longest we've ever been away from them. I'm going to miss them so much! I don't know what I ever did with all those cuddles from little Eddie. We are staying at the Disneyland Hotel in Anaheim and all Bella wants is to make sure we bring her home something good. 

On Wednesday morning I will be speaking with Holister about our experience with Secure Start. I'm excited more than anything to meet with new families. I can't wait to learn a ton! I'm looking forward to coming back armed with knowledge. 

We're planning on doing Disneyland on Thursday and then heading back up to LA for Friday and Saturday. We really want to do some sightseeing there. Then to the red eye flight home on Saturday night. 

I hope to update the blog as the week goes on. Don't hold me to that, we know how bad I am with updating! 

Modern technology sucks! Along with my time management skills!!!

Please don't hate me. My lack of blogging is due to modern technology sucking as well as my lack of time management. I sat down and wrote this blog twice and both times once I finished and tried to save it, it forced closed! UGH! Between that and working and honestly just getting annoyed at the computer I procrastinated. So here goes ANOTHER attempt! I apologize in advance if I forget anything!

So we got some big news right before we left for Chicago, We received the scholarship for California. We received a $1500.00 scholarship towards our expenses at the Conference. We'll be headed there June 29th! We're hoping to some how save up enough money to stay a couple of days after and sight see and visit family and friends we have out there. The scholarship doesn't cover all of our costs for the conference but I will figure out a way to come up with the funds if it's the last thing I do! Our Executive Director of SBAGNE has asked me to speak with her about our Walk N Rolls in the New England area at the conference also!

So Chicago was awesome! Little Eddie was adorable. The traveling itself was pretty stressful and we did learn that the next time we travel with two kids the adults need to out number the kids. Two adults to two kids is NOT enough adults. Otherwise, it was a great time! We had fun getting primped and beautified and Eddie was his usually silly self. I can't wait to see the video and share it with all of you. The Hollister team was so great to us. We even got a day before our flight out to do a little bit of sight seeing. We had a great little train ride into the city and little Eddie LOVED it! Also some great news that week too! Hollister asked me to come speak about Secure Start at Conference also! They are helping with a little bit of the costs too! More than anything I'm looking forward to speaking both times. It's an opportunity to do exactly what I've wanted to do this whole time. My goal through the blog, being on the Board of Directors for SBAGNE and everything else we do is to be an advocate for our kids. Change the view of SB and other special needs kiddos. I've seen the difference that just a change in view can make and if I can help even one person understand our world than it's worth it.

Annabella gave me an awesome Mother's Day gift! She was in a showcase for her voice lessons. She did so good! She was the youngest one there and was so confident and beautiful! Here's a preview of her rehearsals but let me say, she was definitely even better the day of the show!

                           My little star!!!

We are furiously working to get our local Walk N Roll all set up! It's only in a couple of weeks and we feel so unprepared! We'll be okay, we always are! We were on our local tv show and on a local radio station. I posted the video of us on the TV below. Don't judge, it's live TV and I was frantic before I got there that morning. I promise I'm a better public speaker than that! Whatever, the boys were adorable and that's all that matters!

 

http://wwlp.com/2014/05/26/5th-annual-walk-n-roll-for-spina-bifida/

I'm also posting the link to our Fundraiser page for the Walk N Roll for Team Warrior Eddie. Please consider donating or walking with our team. We are also helping organize the walk and are looking for other types of donations like raffle prizes or sponsors!

http://www.walknrollsbagreaterne.org/ng/index.cfm/13246/regPages/pledge/teamwarrioreddie

 

 

Engine engine number 9........

Here we are! Headed to Chicago! That's right! Chi Town baby!! So we're in the airport as we speak to head out Chicago to film a testimonial video for the Secure Start Program! All four of us are packed (a lot) and walker in toe to go on little Eddie's first plane ride. Saying the kids are excited is an understatement! Unfortunately for the airport there is an hour delay and they are way too excited. So if you spot to crazy kids bouncing around Gate B35 no worries there are two tired parents around somewhere nearby keeping an eye on them.  I can't wait to update everyone on our progress, lots of blog posts for the next few days!

Walking, surgery and a star!

Everyday I wake up just keeps getting better and better.  God, I hate people like me that walk around all grateful and happy. Really, I do. I've been Mrs. Pessimistic my whole life. Something happens when you have gone through what we have. When you've witnessed first hand what we have. You can't help but seeing the world differently. I may be tired one day, or overwhelmed by life's obstacles but waking up and seeing my kids do extraordinary things, make it hard to be a negative person. My husband may annoy me some days (well, honestly most days). My kids may have a cranky day which makes some days very overwhelming, but in the end seeing how super smart and sweet they can be makes it all trivial.

Little man is walking all over the place. Mostly like a little old drunk but adorable none the less. I watched him at a party we went to the other night playing with the kids and chasing them around. It was the first time he didn't sit on my lap whining. I realized it was because he could finally play and chase all the other kids. Usually he couldn't catch them but the fact that he could play was awesome! Yesterday we took the kids for ice cream and they had a kids slide there. Eddie usually asks for help up the slide and then shakes while going down (needing us to hold on for security). This time Eddie and I sat on a bench nearby watching him. He walked to the slide, climbed up all the stairs by himself and then sat down and slide down with Bella at the bottom ready to catch him. It was the coolest thing I've seen. Such a small thing and yet such a huge moment to us. Seeing him finally gain some confidence and conquer these little things we wanted for him so bad.

Last week he had a small procedure in Boston. When we were there last we discussed re-doing his circumcision. It wasn't done great the last time and really needed to be re-done to help keep things clean and easy for cathing. So my mother and I headed there last week to have it redone. The ride up was a bit eventful since we had to keep him distracted from being starving! Which just made us more hungry since we really wanted some Dunkin! Once we got there he was his usual charming self with the doctors. Making jokes right until the anesthesia finally kicked in! It was a quick procedure and went perfectly! I have to say, it looks beautiful! (I can say that because I'm his mommy).

I submitted our application for the scholarship to the SB Conference in California in July. It's not enough money to pay for the whole trip but if we get it then it'll make a HUGE dent in expenses for Eddie and I. If we get it then it's meant to be, if not then we'll go next time! No biggie!

We also got some fun news last week. I got a call from Holister (the company we use for our catheters) and they would like Eddie and I to be in a testimonial video for their Secure Start Program. I said yes right away since we love the catheters we have and we have tried a lot. I assumed that we'd be doing it at home or something online. Then she said they wanted to fly us out and put us in a hotel and everything! To CHICAGO! Here's a little secret, I LOVE Chicago! I mean let's face it I love food and it's like the capital of great food! We don't know exactly when yet but probably the end of April. I can't wait. We're hoping we can save up enough money so Eddie and Bella can come too!

Tomorrow night we head to a workshop by our favorite author mommies! The "Shut Up About Your Perfect Kid" authors. I can't wait!!!

Last but not least, we've started fundraising for our 2014 Walk N Roll! We've already raised a ton and are ready to fund raise like crazy! So be on the lookout for all our fun stuff like new t-shirts!

If you read a post, read this one!!!!

If you're a new reader or just one that checks in every once in a while, let's be real any reader!! This is the post to read! HUGE NEWS! We have a walker!! Not a sometimes walker but a real walker! We fall a lot but we get right back up and keep on going. Then fall again! It's amazing!!! I have said lots of times, "I know he'll walk one day" but for that day to actually come is so unbelievable! I didn't  really ever prepare myself for this day. I was okay if he never walked but maybe because I was so okay with it, this seems even better. I can't wait to share some video. Keep in mind he does walk way more when the camera is off but he doesn't seem to want to show off quite yet!

DRUM ROLL..................................

We've had a few hiccups this week also. We not have a UTI. A real nasty one. It started over a week ago when I noticed it while cathing him. From there we headed off to the doctors and headed home with an antibiotic. The next day the doctor called saying that wouldn't work and we needed a new one. So off to our lovely pharmacy we went. (They love us there!) After this his urine looked great!
Wednesday we headed off to Boston for a full urodynamics test. He was adorable, flirting with the whole hospital "running" with the walker through the hospital. We got a lot of the same news as last time which is good and disappointing at the same time. The neurologist was super impressed by how smart and verbal he was considering he has a shunt. He was rattling off shapes and letters to the doctor like a champ!

This morning we woke up with some nasty looking urine, so off to the pediatrician we went! Turns out he has a nasty strain of bacteria therefore a not so fun UTI. He's on another antibiotic. Fingers crossed this kills it! We also have another appointment in Boston tomorrow for a follow up with the urologist. He was out of town last week running the LA Marathon for Team Spina Bifida! Go Dr. Estrada! We're so lucky to have such an awesome Urologists!

The other day Eddie (big Eddie) and I were talking about his experience with all of this. We've decided to add a little Daddy's Corner for Eddie to blog too so keep your eyes out for that in the next few days!

Big BIG changes... and a BIG surprise too!!

Wow! We've recently had some big life changes! I made the decision to go back to work. It was a very difficult decision. I took a part-time job at Sephora at the mall just to bring in some extra cash for the holidays but I knew that if we wanted to move our lives into the next step like buying a home something would need to change. I've loved the time I've had at home with my babies but now that life is settling down and becoming almost "normal", I thought we were maybe all ready. I still struggled with how I would find a place to work that could be flexible with my schedule and find a daycare that was convenient with Bella's school and my employer as well as affordable. Then all of a sudden it all fell into place. I heard about a company that was hiring in a nearby town. I was apprehensive going to an interview. I wasn't completely sure I'd be ready to go back to work. Be away from the kids. Then I had the interview, it was a family owned company just starting out. They were so warm and welcoming. The job seemed like a perfect fit. After I left I couldn't help but think I really wanted it. That's when things all fell into place. I got the job and I found a daycare right in the town my daughter went to school. It worked out perfect because then Bella could go there after school. We were even able to get a nurse to go to the daycare to do the cath.

My first day of work was scary, I wasn't sure what to expect and if I could even do it. Not to mention leaving little Eddie at daycare would not be easy. I cried the whole way home from there. Work on the other hand was great. The position was a perfect fit and I love it. I'm still having a tough time leaving Eddie in the am. It doesn't help that he clings to me every morning. Daycare assures me he's fine the minute I leave but somehow that doesn't really help since he's so darn cute when I'm there. So I've been working a lot between both jobs and big Eddie has really stepped up as Mr. Mom! He's doing a great job! I'm a little concerned he's better at it then me some days. I miss the kids but I love having a little independence and I feel like I'm really contributing at my new job and that really makes me feel great.

So as for the BIG SURPRISE.................................................. Eddie took his first steps!!!!!!! Can you believe it? No? Me either! That's because he's done it for almost everyone except me! Ugh! That's my punishment I guess. Apparently he was working with the therapist the other day and she stood him against a bookshelf and he took four steps towards her. I almost didn't believe it until Eddie sent me a text video of him doing it again at home with him. Apparently he did it over and over again! Sooooo, here it is! The video we've all been waiting for!

As much as doctors have said he may walk independently one day, even possibly without braces. It was still hard to believe. I knew he could do anything he wanted but for some reason this whole walking thing has always weighed heavy on my heart. Don't get me wrong, we wouldn't have cared if he could or couldn't walk ever, but it just weighed on me differently than all of our other diagnoses. I've had so many dreams in the past year and a half of him walking and running and then I wake up expecting him to just walk around. For the first time I feel like my eyes are more open. I can see him walking or running one day. My heart does hurt a bit for those mamas that are still waiting or won't get to see their kids move like my little man. We've been so lucky in this journey but understand that we have hit the jackpot with every scenario and others may have had a more difficult journey. With our big 2nd birthday coming up Friday, I can't help but think how far we've all come.

Big Littles...

The past couple of weeks have been so much fun! Eddie has had some big little milestones. Let's start with Halloween. I was a bit hesitant to incorporate the costume with the walker in case he didn't end up tolerating the walker the whole time. Boy did he surprise me.... Like usual! Not only did he tolerate it but he couldn't walk enough! First we headed to the high school for their trick or treating through the halls. It was a little crowded but he loved it. He walked the whole thing and loved all the attention his costume got. Then we headed to my mother's neighborhood to go trick or treating and I figured that he'd walk to a few houses get frustrated or tired and I'd bring him home while Bella continued on. Again, he surprised me! He walked house to house and even though he couldn't get to most of the doors or up some of the driveways he never tired or got frustrated. Bella was so good she would tell all the houses he couldn't get up to that her little brother was out in the street and asked them if she could bring him some candy too. It was so sweet. She was so patience waiting for him to get to each house. Many times I had to tell her she could go ahead and we would catch up. After many many houses it was Bella who gave up. She finally just said, "I think I have enough candy. Can we go back?" I was so proud of both of them. You know I even surprised myself. It could have been easy to get impatience and frustrated with waiting for him to figure out how to maneuver the walker or how slow his little feet walk. I didn't, I kept thinking wow, I at one point I didn't think he'd ever walk independently or even semi-independently at Halloween. Getting to knock on doors. Here he is, trick or treating and knocking on doors. I couldn't be prouder.

Our little old man from the movie "Up"

The Little Mermaid and Old man from "Up"

This past weekend we attended an event geared towards special needs families. A local organization out here that helps special needs families put a roller skating event on. They closed the rink just for the group and allowed anything out there. Walkers, strollers, wheelchairs, skates etc. It was so much fun. He surprised me again by not stopping. He rolled around that place like crazy! He loved it. he's come so far. Watching him do these small things are so huge. I can't believe he's only had the walker about a month!

Rolling around the rink!

I also took him to a local children's museum expecting to fight him to use the walker there but hoping that it would help him realize how functional it could be. I really wanted to encourage him to use the walker as an extension of him. He did great! He cruised around everywhere. He had so much fun! I can't wait to bring him back!

Making a big water mess at the children's museum

For the past four weeks Eddie's been going to a extra therapy. American International College in Springfield, MA has a PT and OT program and we got to participate in their practicals. He had three students working with him and he loved it. For months we've been working with him on two big things 1. The walker and 2. Rolling over. Today he should me by doing great with the walker. Really making it an extension of himself more than a toy and at the end of the session today he rolled over. BY HIMSELF! Not a big deal for most parents since their children usually hit this milestone around a few months and we're finally hitting it around 21..... 21!!! I was so excited! It was awesome! Soooo, today will be spent rolling and rolling until it's natural!

Some more big news is that I've been asked to serve on the Board for the Spina Bifida Association of Greater New England. I attended my first meeting Tuesday night and was so impressed by the organization. I've always been impressed by them but this really opened my eyes to what they do for this community. I couldn't be prouder to become a part of it all. I'd love it if you all checked out their website at http://sbagreaterne.org/. If your not local check them out to find a chapter local to you! http://www.spinabifidaassociation.orgThey are amazing!

I've been up and down about Eddie's increased sensation with bladder/bowel. I can't tell if it's increased or if he's just more aware as he gets older. I am hopeful that it's increased but not exactly sure. I went in search of info on the Holister Secure Start website but couldn't really find out the answers to some of my questions. It's such a great resource and I've gotten so much out of it! I'm hoping Holister begins to add more info and little videos on new topics. I'd love to continue to learn more about the neurogenic bladder stuff. It just seems so beyond my understanding sometimes.

We've also started fundraising in hopes to go to the Spina Bifida Association's National Convention in Aneheim California. We've started a Go Fund Me page http://www.gofundme.com/49lo70 and we're doing a Yankee Candle fundraiser with 40% of sales going to our cause https://www.yankeecandlefundraising.com/ycfroot/store.htm
 

Can't wait to see what the next few weeks bring us! Eddie's been doing so much so fast! Stay tuned!!!

Imperfect Mommy's need a night out too

Social media has officially made me beyond annoyed at times!  This imperfect mommy (otherwise known as special needs mommy) feels like crap when I see all of the Mommy's with their perfect kids showing off all the fun stuff they do or all the fun mom nights out they get with their perfect mom crews. Well us imperfect momma's don't really have as many hours in the day. For example a typical day for me. 

*Drop Bella at school 

*Attempt to grab a quick coffe through the drive thru

*Go to swim therapy group /gross motor group

*Attempt to catheter in the trunk of the car while avoiding getting pee everywhere as well as poop since a blow out is inevitable this time of day thanks to the bowel issues

*Drive home while attempting to keep Eddie awake so he doesn't fall asleep in car and can eat lunch at home

*Wake Eddie up once we're home since he feel asleep

*Feed him lunch while catching food thrown on floor

*Put Eddie down for a nap and listen to him cry for 20 minutes since he slept in the car

*Send one email

*Wake Eddie up right after he finally falls asleep

*Go pick up Bella at school

That's all before 3pm. This not including any after school activities with Bella and dinner and homework and bed. A few catheters in there somewhere too along with meds. 

Thank goodness for iPhone alarms! 

So I've decided these imperfect mamas deserved a night out like the rest of you. For good food and better drinks! Along with lots of talk about our lives without feeling like someone is going to tell us how strong we are or how our kids are miracles. So once every two weeks we're having a night out! Last meet up there was 3 of us and this week 7! Can't wait to see how many of us we can get together. Take that perfect mamas! We have a crew too! 

(Want to credit Gina and Pat writers of "Shut Up About Your Perfect Kid" who originally coined the term Imperfect Mommy/Kid) 

Quickly I wanted to mention that at the conference last month and the Abilities Expo we received a ton of catheter samples and I've had a chance to use some this week. I was curious if I'd like them better than the ones Holister sent me from my Secure Start research and conversations. Ugh, definitely not. Let's just say diaper changes were a bit messy. So the Secure Start process with Holister wasn't one of those too easy to be good events. It actually was that easy to discuss, research and find the right catheter for us. I do wish the bag was a bit smaller since we only get about 50-100mL's at a time but I'm guessing this is because the catheters we use are for adults and pediatrics. Also, a catheter that only goes one way and doesn't slip back into the bag would be so much easier too, holding eddies legs and inserting the cath with one hand while takes some serious dexterity.  Either way they've worked great for us! 

Can someone make this decision for me?!

A lot has been going on lately. First thing was that we took Bella to NYC (a very very late Christmas present). The poor kid has been so patiently waiting for this day for so long. We had already rescheduled it twice. The first time due to lack of sitters and the second due to our wonderful Fourth of July escapades. (In case you forgot the whole blood clot/ dislocated shoulder blade fiasco!) she couldn't wait to go. We took her to see everything she wanted. She loves NYC so much. After lots of sightseeing we took her to see Annie on Broadway. It was so awesome! Bella has been singing songs from that musical since she was 2! She has watched that movie a zillion times. She was first in line and wanted to wear her hair just like Annie's! She was adorable!

We also made our biggest purchase ever that week. Despite being super broke my car was costing me an average of $300.00 in gas a week just to get Bella to school and Eddie to therapy. There was just no way we could swing it anymore. We set out loan shopping and car shopping and some wonderful goodwill from wonderful people allowed us to not only get a loan but an amazing deal on a car. We got the perfect car for us. It's a '09 Subaru Forester and it's in amazing condition with great mileage. I went from filling up once a day to once a week!!! 

Speaking of financial woes, I have felt really guilty lately. I'm torn between going back to work so that we can not only get on our feet stably but so we can move towards our dream of homeownership and being here for Eddie and all of his therapies. If I go back we'd be in a better spot financially but Eddie would lose some of the services he gets and I wouldn't be able to learn from the therapists like I do now and continue to be a part of that work. I don't think I'm anything extra ordinary but I hope that the fact I'm here helping push him and working with him at home attending his therapies is a big part of how he's come so far. What if that stops. Who will push him? What if that choice pushes him backwards or holds him back. At the same time how will we keep a roof over these adorable children's heads? Food on the table? Big choices need to be made, and very soon. I've never felt so stressed and sad about anything. I feel like I'm letting someone down no matter what. Either little Eddie by taking away what I feel he desperately needs or big Eddie by putting all the financial pressure on him. I'm hoping I can find the faith I need so that we came make the right decision. 

It's finally here!!!!

It has arrived! Our trial walker is here and in true Eddie fashion he loves it as long as I'm not the one walking with him. He takes off like crazy with everyone else but if I take it out and try to get him to walk anywhere he stands on it and just whines and says "Mommy no.... no mommy..." over and over. The little man has officially got my number! Despite this I really am trying to get him walking on it. Today I'm planning on reorganizing the house a bit so he may have a little better time getting around. Maybe then he'll use it in the house a bit. We ordered one of his own that should come soon. Hopefully we can use the loaner one until then. Also we've upped his PT and added OT and like last year he's going to be doing the work with the American International College students. For four weeks once a week he gets to work with students in the OT and PT program. Last year it was really beneficial to have them working with him and I can't wait for it this year!

Eddie and his best friend at the zoo!

We had a our first UTI this week also. I know this isn't normal talk but in the SB world it's common conversation. Good thing is it was very mild. Actually as soon I brought him to the doctor we were at the tail end of it. Like usual, I got right to researching it. I went to my go to Hollister People First website and found a webinar on preventing UTI's. It was great, some stuff I already knew but it was nice to have a refresher. Sometimes I cath so often I forget the step by step stuff. It was given by a nurse with LOTS of stuff on her resume! It's funny, at first I used to carry a bottle of hand sanitizer everywhere so if I had to cath outside the house I was sanitary. Somewhere along the line I stopped bringing it for some reason. Also, I noticed that I was cathing very quickly. Possibly causing damage. Which can then bring UTI's. I'm determined to be more sanitary and much more careful.

A bunch more happened this week including a trip to NYC and a new car! I'll blog about that later since I'm totally unorganized and don't have the pics all together! Wanted to get our exciting news about the walker out there first!

Oh the excitement!!!

Where do I even begin to start? We have had such an amazing and not to mention busy weekend. Friday night we headed out to the New England Spina Bifida Conference in Sturbridge, MA.  After a stressful pack up and drive up there (mostly due to my own mommy stress out cranky fit!) we checked in and followed our little hotel map around many twists turns and doors to finally find our room. This was quiet amusing since the hotel seemed to be somewhat of a labyrinth. Literally. Apparently if you take the elevator to get to your room you end up going through many many doors and hallways to find your room. We did later realize that if we took the stairs the room was practically right in front of us. With my wonderful mood and extreme hunger pains along with the kids moods it was around 7pm (usual bedtime) and we were hungry! So we headed out before the 7:30 meet and greet. We planned on a quick trip to grab diapers and something fast food. Little did we know that the town of Sturbridge is also something like a labyrinth. Even though we never left the main street we ended up taking what felt like 35 right turns to make a quick left hand U-turn. Once we were all fed and attitudes came up a bit we made it to the hotel and dropped in on the meet & greet. It was so nice to meet some of the other families that were also there for the conference. Eddie decided to spend the whole time walking alone the brick 4 foot wall and flirting with all the girls. Typical Eddie. Bella went to work playing with other kids and bossing everyone around in her best way.

The first night in the room was to say the least, restless. The baby chatted for a couple of hours saying hello to all of us over and over again. I got hit like a ton of bricks with a head cold and Bella decided to wake up at about 5 and talk at a very loud volume and asked about a million questions and then began with.... "Eddie..... EDDIE..... WAKE UP!!! IT'S MORNING!!!" For the record, the sun was not up and I do not consider that morning!  In my head cold exhausted fog I may have uttered a shut up unknowingly. Once we were all up and moving we headed down to conference. We sat down for some food in the conference room and then dropped the kids off to the kids club. Which I'm not embarrassed to say was the best part. I needed a kid break already, it was a long morning! We scooted up with some friends that were already sitting up front and settled in to listen to the keynote speakers. I have to be honest, the last conference we went to had the most boring keynote so we were too excited. Well, weren't we surprised.

The keynote speaker was two hysterical women, sisters actually who both have children disabilities. They've written a book together called, wait for it........... "Shut Up About Your Perfect Kid". I couldn't have written a better title for a book. Actually I'm pretty sure I've said that line in my head at least 3 times a week! Everything they spoke about made me feel like they were narrating my own life. In my own little "special needs bubble" we've chatted about how even though all of our children have different diagnosis's we're on the same journey. I can blog until the cows come home but no one understands what this life is like until you've walked it. These two women not only understand but were able to put into words exactly how it feels. The best part was that they shared the humor and sarcasm I tend to apply to my own little world. I'm sure that even a parent without a child with special needs could find the support and humor in this amazing book. Let's be honest, we've all at times wanted to shut up that perfect mom! We even had a chance to chat afterwards with them and even bought a copy of their book ourselves. They are warm and extremely approachable. They were able to connect with all families there. You could tell by watching the line, they were making each family feel as if they were not alone. Living in this special bubble, nothing feels better. I encourage all of you to either get a copy of their book and/or check out their Shut up about your perfect kid Facebook Page. I can't wait to finish the book (yes, I can't put it down!) and pass it along my special Warrior Momma bubble.

We had the opportunity to learn some great stuff and had lots and lots of giggles together with some good friends Ashley and Mark. Annabella and Eddie had a great time also. The kids club was great! Annabella wouldn't leave Ashley and Mark's son Colton alone. She was by his side all day!! Eddie seemed to have fun also. He also had the chance to try out another little friends walker. Well didn't he surprise us all. I was confident that it would take a lot of work to get him to use it. It took all about two seconds for him to get cruising. What a maniac. He started walking all over the room and within minutes was practically running. He was not happy when we had to take it away. This week is seriously going to go by so slow waiting to get one for us to use! He loved it! Check out the video of him below!

Colton and Bella having fun at lunch!

 

 

 

 

 

 

The next morning after a bit more sleep, we headed out to the Abilities Expo in Boston. We saw a lot of cool stuff and next vendors. There was a lot of stuff that didn't really pertain to us but it was very cool to see the products and advances out there. We did get a chance to speak with a couple of intensive therapy programs. One in Michigan and one in Florida. It seems like a neat idea and may be beneficial for Eddie. I'm interested in learning more and speaking with out local PT about it. If anyone out there has tried one I'd love to hear feedback. We were disappointed that we didn't see any therapy/service animal booths.  I was really interested in learning about them and how they could help Eddie. He connects so much with animals especially dogs I was hoping we'd get some good info. Hopefully in the future we'll get more info on them.

This morning I took some time to look for some info on SB and sexual issues. I know it's far away but I was really interested in learning what Eddie's future may look like in that department and we planned on attending a workshop on it at conference but it happened to get cancelled. I checked on the Hollister Secure Start website hoping to find some info there and came across something else they do. A program called Hollister Ambassador. It seems so cool. Anyone with spinal cord injuries can apply to be an Ambassador. Have to chance to speak with others and share their experience. I thought this seems like such a great program. After this week we've seen as parents what a great opportunity it was to have a connection with other people going through what we are. It's nice to know that Eddie will have a chance to connect with others going through what he is. I found it wonderful that a catheter company would take the time out to help their customers connect. It seems that they're not just out to sell a product but to put their customers needs first!

This week should be eventful also. Hopefully get a walker to try soon and we'll be attending another workshop on Wednesday night. By next week I'm sure I'll have lots more to tell you!

Big changes!

Lots has gone on this week! First and foremost we got a stipend towards the New England Spina Bifida Conference in Sturbridge, MA this upcoming weekend. We're so excited! We can take the kids since there's a kids club and we got a room for an extra night so we could attend the Abilities Expo in Boston on Sunday! I'll let you in on a secret I'm really hoping to see Auti Angel from Push Girls while we're there. She'll be doing a wheelchair dance class. I absolutely love that show! I love when we get the chance to do these things since we learn so much and get to meet so many others in our little community. We also got the save the date for the National Spina Bifida Conference. It's in Anaheim CA at Disneyland and we really think it would be an amazing experience and chance to learn. We set up a gofundme account with hopes to raise enough money to attend. It's not until July 2014 but its never to early to get the ball rolling. The link to the gofundme site is http://www.gofundme.com/49lo70?forcedesktop=1 if you'd like to check it out. 

We decided on getting Eddie a reverse walker and the vendor will come September 30 to show him what he can offer and Eddie will get to trial out two. We also went to Boston Children's to meet with ortho, they would like to get him back into AFO's (ankle foot orthotics)    Not 100% of the time but just to see if we can stretch out his hamstrings and back of his knees. We also spoke with our service coordinator for EI and decided to add on OT (occupational therapy) along with our PT and maybe some more PT once he has the walker and AFO's to get him moving. We're going to address some of his sensory issues with the OT and hopefully get him more confident.

Lots of changes lately. All for the good I hope.  

Letting go!

No Eddie is not letting go yet but boy am I having to! The past couple weeks I've really had to let go! Of both my kiddos! Annabella started Kindergarten this week, I can't believe my baby is a kindergartener! The house has been very quiet this week and I'm not sure how much I like it. it has been nice to get some one on one time with Eddie. I've really had the chance to focus on him and what his needs are. It reminds me of the days I was home with Annabella when she was a baby. We had so much fun just the two of us. I've also had to let go of Eddie a bit too. I've been reprimanded by our EI therapist about not giving Eddie a chance to be independent. It's so hard not to everything for his adorable face! I'm trying though and I've totally seen a difference. He's really been trying to do some things alone and exploring his little world a lot more. It's neat to watch.

This week we also discussed with our PT about getting him a Posterior Gait Trainer (Walker) so that he can start getting around while being upright. I was a little against it at first because I was worried that it would be used as a "crutch" and he wouldn't be motivated enough to walk independently. I spoke with some moms on my support group on facebook and got quite a different reaction. Lots of parents said that once their child got one they got much more confident and eventually just let go and started walking. Well that sold me! Confidence! He needs that! So we agreed it would be a good idea and having a posterior one would help him stand up straight instead of leaning forward which he seems inclined to do, always! Our PT is setting up something with the vendor to come to center and let Eddie try a few and see which one fits him best. I was sure he wouldn't even want to try them but my minds been changing. Yesterday at group the PT gave him a big chair that's shaped like a box to push on the floor while standing. I thought for sure it would move and he'd do what he always does, kneel instead of take a step. Well in true Eddie fashion he shut me up real fast! He was cruising around everywhere! I couldn't believe it! Then we got home and gave him his push toy (which he never wants that way he always wants to ride it) I put it on the grass outside so it wouldn't go too fast and he loved it! I'm beginning to think this kid is going to show me!

Eddie pushing the chair at group!

Pushing the push toy at home!

 

 This week I also took the opportunity to check out some more stuff on the Holister Secure Start site. I found a bunch of online courses. I loved it. There's nothing I love more than classes, no seriously. I will take a class or workshop whenever I can especially when it comes to SB stuff. I watched a good one about the basics and actually learned a lot. If there's one thing I'm not as confident about is my knowledge on this whole bladder/bowel stuff. It was awesome to learn some more. Every time I meet a parent of a child with SB or speak to someone new to the whole process, the biggest advice I can give is learn! LEARN LEARN LEARN! The more we know as parents the better we can advocate for our kids. Doctors are smart but sometimes we know what's best for our child.

Bella's first day of school!

BRAGGING RIGHTS!!!

I have waited 18 long months for this day! My little man got up yesterday on those parallel bars that have sat in our house for months and finally took steps without my help! He just stood up and said "walk?" and took steps! All the way across. Then over and over again. Well, with the help of Bella coaxing him with an icee. Immediately starting filming with my phone and crying! I couldn't watch him do it enough. I didn't even want to put him to bed I just wanted him to walk all night! When Bella took her first steps we were excited (trust me very excited, she waited 16 long months!) but I still took it for granted a bit. Watching him yesterday (and this morning, actually as I type he's behind me walking) I don't think I could appreciate anything more. I'm not sure if there are words to describe the feeling that you have when two years ago a doctor told us our child could be severely mentally handicapped and wheelchair bound with no feeling in his legs. How even though we fight for him and hopefully make him believe he can do everything we're still silently holding our breath waiting for those milestones so we can breath again. I have dreams over and over again that he just stands up in the living room and takes independent steps. I have no doubt that the day will come, but a piece of me is still holding my breath a bit. So after 18 longs months I'm BRAGGING!! GO WARRIOR EDDIE!!

Going great!!!

What a great week it's been! First I received my first shipment of new catheters. The minute we opened them I thought to myself, "Hi new catheters, where are you been all my life?"  They looked so easy and so much less waste. I couldn't stand getting all of this "extra" and having to throw it all away. The old catheters came with gloves and bags and sterilization tools and more. It all got thrown away. Not to mention the countless amount of times I've slipped with the catheter while draining it into the diaper and gotten pee everywhere. All of this makes for a very overwhelming experience for someone that's not doing it everyday. Which makes getting sitter complicated. It's not that there's a lack of help but I know how difficult as an idea and that makes asking people to try it tough. 

The old catheters

The new catheters

So about the new caths! First I went on the Hollister's Secure Start website and signed up and then used all the awesome resources to figure out what one would work for us. Made a quick phone call and they swiftly sent us a box to try. We opened it up and it was so much less! All in one catheter and bag and lubricant.  Just one thing! After a couple of days I called our supply company and asked to switch our caths to the new ones. They were hard for them to get but within less than two weeks they were at our doorstep. I'm excited to teach someone and see if they have a less overwhelming experience than before.

We also headed to Boston again this week to follow up with Urology about the Urodynamics test we had last month.  The trip was dramatic to say the least. My grandmother was nice enough to get up bright and early and make the trip up with me since this time I had Annabella along also. Usually she's in school but since it's summer she came along. BIG MISTAKE! She was exhausted and miserable! She complained and whined from beginning to end! Despite this drama news was awesome! Dr. Estrada told us that his reflux went from a grade 3 to gone! YAY! Also, we discussed that Eddie's sensation seems much more enhanced. Every time we cath he gets very annoyed and can definitely feel it.  He said that we'll redo the urodynamics again in 6 months and add the neuro part to see if things have changed. He said he's hopeful that he has more nerve function than before. He also said if so and things look good again we may stop cathing! TRIPLE YAY!!

This past weekend we headed out to Cape Cod for the Falmouth Road Race. My brother signed up a little while back to run with the Spina Bifida team from Spina Bifida Association of Greater New England. We had so much fun all weekend! We stayed at family friends home in the Cape and shared tons of laughs! It was just what we needed! On Sunday Eddie and I woke up to a chatty little Eddie and threw him on the bed with us. Well apparently he decided to surprise us by trying to stand up unassisted on the bed! Over and over! I was so excited! After lots of praise, we got ready and headed out to Falmouth. WOW, what a lot of people for such a tiny town. It was packed! I think there was something like 13,000 runners. It was so exciting watching so many people doing something I could never do! We had our eyes on the lookout for the blue Spina Bifida t-shirts, every time we saw one we cheered louder. Then here came my brother! Looking great! I was so proud! He even stopped for a second to kiss the baby on the head. So cute!

My brother's girlfriend made this! It sums up the day perfectly!

It's been a wonderful week and I'm hoping it keeps up! I can't believe that my baby boy is 18 months today! Gosh really a toddler now! Only a couple more weeks of summer and my baby girl is going to Kindergarten! What is happening!

Ok universe....... I get it..... probably!

So this is redundant but for some reason I'm not getting it and the universe is hell bent on making sure I do.  So I think it's about time that I step up and start listening.  What do I mean by this? Let's see, I've said this before but as a mother you want you kids to expierence everything. Most mothers wait what, like 6-7 months for their children to walk. It's usually not a thought really until about 10 or 11 months old. The transistion from crawling to creeping to crusing to standing to walking seems to fly by. For us other moms who were told at 20 weeks pregnant that our child may not walk I've been waiting 26 months!!! That's over two years! Now I am so appreciate that we know that there will be a day that he will be up and walking and maybe even running around. There are other mommas out there whose little ones aren't going to walk until 3 or 4 years old or some may never walk. Hearing over and over again that he'd totally going to be a walker and having trouble pictuing it is tough. I have all these dreams at night that we're out somewhere like a park and he just takes off. Over and over again I get to these points where I get frustrated. The worst part is he clearly gets frustrated sometimes. I even broke down the other day (a couple of times) just wishing he could do it. Wishing for a sign he was progressing. Sometimes when your engulfed in something every day it's hard to see the little changes. Then he showed me. He was at swim class at standing in the shallow end with the other kids holding on to the side. He was watching all the kids jump around and play in the water and he kept looking through the corner of his eye at me. I just sat quietly. Next thing I knew he just took a couple steps back and let go. He literally stood for about 7 seconds!! I was so excited I screamed! Obviously, this caused him to drop to his knees. Then he showed me, another day we were at my mom's inground pool and he was standing on a stair with his back to the stair and he took like 2 steps and stood there. Then he jumped forward and tried to swim (with a puddle jumper on)! I'm starting to see that in order to get him to do anything I just have to find a secret dare devil game to play with it. My plan this way is to get really creative!

Secondary, even though this have been a tough couple of weeks around here the toughest part for me is being the one who writes the checks and pays the bills. It's one thing to know when your broke, it's another to see the money go. Watch the bank account go down and not know where the next check will come from.  This week we've had many angels and blessings. Quiet little fortunate circumstances have come our way. Everytime I get scared we won't have enough we figure something out. I keep thinking, please don't let my "almost" luck run out! (*Almost luck is what I call the times that things go bad and then something good happens to break you to at least even just giving you enough so you can't be mad and have to be appreciative) So to all of you angel out there that have helped us these past couple of weeks from babysitters to those hiring us for odd jobs and more. You know who you are and I wouldn't know what we would do without you.

So, no more getting down! No more doubting little mans abilities or my own! I watch all of these warrior mommies in our little special needs circle have tough weeks or days and we all doubt our strength and abilities. This is for them.... STOP, remember that tomorrow will be better and there are little reminders everywhere all you have to do is keep your eyes open. You will find them.

So universe I get it... well I'll try harder at least!

Secure Start

I'll be posting a couple of times a week about a program that I've recently enrolled in and as I know that some of you have no connection to SB or cathing needs I'm hoping you'll read about our experience like you so warmly do with all of our experiences. Our blog is about our journey and cathing a a huge part of our lives. I mean really most of my day revolves around it!

So a little bit back I saw a post about getting to blog about a new program from a cath company. The company was Hollister. You can check out there website here. I signed up thinking it would be perfect. We didn't have much direction with cathing and were desperate for a new system to use. Hollister has this great program called Secure Start and it's a personalize program that they offer for free. All you have to do is sign up! They have nurses on call and send you personalized info for your needs. They even have a national speaker network with things like webinars and events (which we all know I love)! I was very excited to check out everything they had to offer. I signed up and once I did I was able to access all these info brochures and check out all the different types of supplies! They even have a downloadable coloring book for kids to help them understand cathing! Which I'm sure is a great tool when potty training time comes! I'll definitely be taking advantage of this! It also had resources and links available to us! I signed up for the Abilities Expo in Boston in Sept! It's even free!! I can't wait! I didn't even know about it before!

I sent off my script for catheters and spoke with very friendly and helpful representative from Hollister's program. He explained in detail the types of catheters they have and we discussed what might work best for us. I choose to try the Advance plus one since we were looking for something with less waste and more importantly something less intimidating for others to learn. Right now we have a system where you attach a bag to the catheter and have to apply the lube. It comes in a package with a ton of other medical crap like gloves and iodine. None of which we use and it seems to just make things complicated and intimidating for new family and friends that may be interested in cathing. Our hope is the new system will be so easy others may be more inclined to try. The more people we can teach the better for little Eddie. As of now only two other people cath, my mother and my 18 year old cousin. Makes for limited sitters!

I can't wait to check out the new stuff! Best part is for a impatient person like myself they send out 25 samples for me to try and they'll get here in 2-3 days. Even better if we like them the supply company we use will deliver them! Which is great because we love the customer service our supply company provides!

When it rains it pours.... Sort of!

So first off this will be one of two posts today. For the next few weeks I'll be posting our usual updates as well as an opportunity I received about posting about my experience with a new cath company and their services. I'm excited about this since in my experience especially when we first started cathing I was a little lost. These services and hopefully the outreach of the blog will assist others in their experience. 

Now to the big updates!! Since we last spoke we here in the Gagnon household have had quite the array of events and catastrophes! I had a couple of painful weeks of mishaps with my IUD. (That's all I'll say on that since no one wants to hear about my birth control woes).  Just as I was recovering from that came all the excitement! Big Eddie took off for a guys only camping trip with his Brother, Brother in law, Father and Uncle. He got to have quite the relaxing mini vacation. Meanwhile here at home I woke up to a vomit covered one year old in a vomit covered bed. Very exciting! He seemed to feel better as the day went on so I took him to the local little July 4th festival that's right at the park near my house. He seemed tired but not much else. We headed home and just as I walked in the door he so nicely aimed right at me and vomited all over me and himself! YAY more excitement! (How's that getaway Eddie?) He had a low fever also. So I called doctors and after a few annoying phone calls with on call barely doctors (thank you holiday weekend!) One that told me to move the shunt tubing away from his skin. I proceeded to yell "Don't you know what a shunt is?!?!"  I hung up feeling unsatisfied! I decided since a shunt issue or UTI could both be possible we'd bring him into the ER. So my mother and I headed to the ER. Thank goodness for the wonderful staff there for not making me feel crazy! He ended up getting a crazy eczema flare-up while we were there which freaked me out more but the doctors and nurses calmed me by explaining that eczema is autoimmune which is a sign he just had a virus! Urine came back great so virus it was!

I woke up the next morning very dizzy. I chalked it up to dehydration since I had been to the chiropractor a couple of days before for neck pain. That was Sunday, by Monday morning I was so dizzy I couldn't stand it. I called the doctor and went it. They did a bunch of neuro type tests and decided that I maybe needed a MRI, the earliest though would be Tuesday night. I went home and laid down. When I woke up the left side of my face was numb as well as some tingling in my left arm. Eddie forced (I say forced since I really really didn't want to go) me to go to the hospital. Once there they preformed a ton of tests and two CT scans. One without contrast and one with. Doctor came back and said I had a significantly large blood clot in my left jugular right in front of my carotid artery! WHAT! Apparently it's rare to get one especially without trauma or a IV line there.  So four days in the hospital (with a disgusting roommate.... no disgusting doesn't even begin to describe it!) and one mini meltdown later. I was discharged with a script for blood thinners. I'm now on them for at least a year since they have no idea how I got it in the first place! The excitement doesn't end there though! I was discharged on Thursday afternoon and Eddie brought me home, set me up to rest and packed up the kids for a fun night of fireworks at his parents house. A few hours later the phone rings and his mother called to tell me that Eddie crashed on the moped and was at the ER in Connecticut! AHHH, yes that would make 3 ER visits in less than a week! Jesus! I hopped in the car and drove down there to check on him and get the kids. So he ended up having a dislocated shoulder and a fracture in his shoulder where a piece of bone was chipped off and floated around. I couldn't even get mad at him, for the first time he wasn't doing some daredevil trick he was just taking a ride with his dad. Thank god they weren't going fast and he had a helmet on! Unfortunately he's been out of work since from both jobs. Thank god he went back to his full-time job yesterday on light duty!

Finances are beyond tough right now. So although our bank accounts are totally drained, we're alive, relatively healthy and recovering! I say this much more optimistically here then I am really feeling! I've had a few mini meltdowns this week. In all honesty I'm drained. I'm exhausted and defeated. We really try to be positive considering some of the circumstances we've been dealt. I try to see the bright side of things but it's also been very emotionally draining lately and looking at a double digit bank account balance is scary. We've worked so hard to make sure we were in a position where bills could be paid and therapies could be attended and we could get our children maybe not what they always want but what they always need. This week I'm so drained and scared that we won't be able to get them some needs either. I know we will work it out and figure it all out. We always do. Things do work out as long as you work but the unknown is always tough! I really appreciate having this outlet to write down my thoughts and our struggles knowing that there are others out there reading this going through it also or something similar. That connection through blogging is what makes it my little support group! Thanks for being there bloggies!