Thursday, November 14, 2013

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 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 and we're doing a Yankee Candle fundraiser with 40% of sales going to our cause

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

1 comment:

  1. Wow. I haven't been to your blog for a little while, so I was happy to see these pictures of Little Eddie. I can't believe how big he's gotten!!! & I remember you telling me that they didn't think he was ever going to walk, but you & Eddie KNEW in your hearts that he would some day. & look at him!!!! (:

    I love that you keep up on this blog. It's inspirational, even to people who are not going through the same thing that you guys are. I give you so much credit for doing what you do, & staying so positive & optimistic. That is commendable.

    Keep up the awesome work!!!! (: