Monday, April 7, 2014

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!

Tuesday, March 11, 2014

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!




Wednesday, February 12, 2014

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.


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 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!!!











Saturday, October 26, 2013

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! 

Sunday, October 20, 2013

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. 

Monday, October 14, 2013

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!