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!