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!!!

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!

Monday, September 23, 2013

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!

Friday, September 13, 2013

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 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.  

Thursday, September 5, 2013

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!

Tuesday, August 20, 2013


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!!

Wednesday, August 14, 2013

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!

Thursday, July 25, 2013

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!

Thursday, July 18, 2013

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!

Monday, June 17, 2013

What an amazing week!!!

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

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

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

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

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

Team Warrior Eddie!!!

The Western Mass Warriors with our little Warrior!

"Little" Warrior Eddie and "Big" Eddie!

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

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

Monday, May 20, 2013


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

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

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

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


Thursday, March 28, 2013

Hi my name is Kristin and I'm really bad at updating!! PART 3

So continuing on! We had a follow up with the Neurosurgeon earlier this month and my little man did wonderful! Shunt looks great! Function is amazing! No follow ups for 6 months! I have a good feeling we're not going to be back in between either! Then came the Neurologists follow up. Again, he showed off and really impressed the doctor and nurses. Chatting away and flirting with those adorable eyes! Great news there too, no follow ups for............. drumroll please.........................ONE YEAR!!! YAY!!!

Now to present day, finally! Last night we headed to a caregiver night out for parents and caregivers of special needs families in the area. I was real hesitant to go. Sometimes I feel like we've been so lucky with how Eddie's been doing that we don't deserve to go to these things. I was so wrong though. I am really glad we went. We got to meet other families and I realized that there are so many resources that we will need as he gets older and faces more challenges. Plus I realized that today we may be doing so well but at any point things could change with a medically fragile kiddo. To look at Eddie he looks like every other one year old, but one infection or bump on the head in the wrong place, one missed cath or missed does of antibiotic could possibly bring a problem. One day he could have no pain and great function but he could grow too fast and get tethered spinal cord and need another surgery and could lose more function. Or we could never have any more major medical issues. We won't know but I'm glad that no matter what we've been through or will go through there is this support system of other parents out there that just get it. There's no pity party or "I'm so sorry's" We just get to talk about our triumphs and struggles and how cute our little ones are. Plus I've realized without this system we wouldn't have access to half the resources we do and therefore we wouldn't have the chance to fight as hard as we do for our little man!

So speaking of fighting for our little man. We are helping to organize a Walk and Roll in June here in Westfield, MA. All proceeds are going towards the Spina Bifida Association of Greater New England. The event is on June 15th, 2013 at Stanley Park in Westfield, MA our team is Team Warrior Eddie check out the website here; Team Warrior Eddie Walk N Roll to donate or join a team! We're also holding a bowling event to help support our team on May 4th, 2013 from 5:30-8:00pm at Shaker Bowl in East Longmeadow, MA. Tickets are $15.00! Check out Team Warrior Eddie's facebook page here; Team Warrior Eddie Facebook Page! We're selling T-shirts here; Team Warrior Eddie T-Shirt Orders  and bracelets also! We're very busy!!! Please help spread the word for the events! We'd love to get more teams signed up to walk also! If you're not from around the area check out local Walk N Roll's in your area!

This is the front and back of our bracelets for $2.00 each

Tuesday, March 19, 2013

Hi my name is Kristin and I'm really bad at updating!! PART 2

So February brought huge disappointments and big celebrations. In the disappointment field.......... The New England Patriots broke my heart once again! That's all I have to say about that! Celebration wise, Little Eddie's first birthday! It was great! The weekend before his birthday brought a huge snowstorm and while we were snowed in all weekend Eddie spotted a bottle that rolled under the coffee table and army crawled towards it! FINALLY!!! Forward motion! I was seriously beginning to thing we'd never see that day! Saturday following his birthday we had a big birthday party with friends and family at a local pizza shop perfectly names "The Pizza Shoppe" we decorated it all up with a duck theme since every time he sees a duck he gets super excited and quacks! Plus before he was born for months Bella insisted on calling him Ducky Eddie, thank god that didn't stick! Eddie had a ton of fun he ate a TON and attacked the cake like we would never give him cake again!

Full of cake!

The next celebration was a HUGE one and a HUGE surprise! As our anniversary approached Eddie asked if I'd mind going to some thing at his work. Apparently they needed people to come take photos while dining for the menus and website. Looking back the story seems weird but at the time I just was annoyed that we were doing a "work" thing on our anniversary. That even though it was a free meal at a nice restaurant it was still one where I had to take photos (which I hate) and it was his restaurant with all his friends. I figured he'd be socializing the whole time. I wasn't thrilled about the idea but he seemed excited and wanted to buy me a new dress and everything. So I went with it. Probably with some attitude but I went with it. That night we got all dressed up and headed out. When we showed up we walked in and my friend Ian who does all our family photos was there snapping photos. I instantly thought this was weird but he looked surprised too and said they had hired him. I figured that Eddie had referred him. Next we sat at the bar where there was two champagne glasses ready. I thought this was weird too but Eddie said he asked them to do it for our anniversary. Again, I didn't really question. I was pretty nervous to do the whole photo thing anyways. Eddie got pulled away and as I was sitting waiting for him to come back and I feel a tap on my shoulder. I turned around and who was it.......... my DAD! Ready with a corsage and said he was there to walk me down the aisle for the first time! I was so surprised!

A little back story quick is that Eddie and I got married in Tennessee right after Bella was born. We were engaged and planning on having a wedding in Massachusetts at some point but I was running out of health insurance so we thought what the heck we'll get married here in TN and then plan something back home in the summer. Well that never happened since we spent all of our money moving back home instead of visiting and lets just say that the whole getting eloped thing isn't all it's cracked up to be. We didn't realize you actually say vows there we thought we'd get a piece of paper signed and be married. Not exactly! While I was dressed in my best over-sized comfy sweats and my hair in a beautiful not washed messy bun. A one month old Annabella in tow in a car seat we said vows in front of the town clerk and whomever was in the clerk library at the time. It was so romantic! Ever since we've talked about renewing our vows. Even more since not long after we moved home Eddie and I took about a year and a half seperation. Divorce seemed inevitable. Then one day we just figured it out. It took a lot of hard work and even more forgiving on both sides. We finally managed to get to a good place. Maybe a better one than before. Than our little warrior came along and at a time that most marriages would struggle ours seemed to triumph. Don't get me wrong we've had many many hills throughout the road but we've had many more amazing trips.

 So back to the dinner, as I stumbled my way to the door to the side room and tried my best to regain my control.  I don't think I did too well. As the door was opened I saw a room full of friends and family waiting, rose pedals on the floor and my super handsome husband waiting at the other end of the room. It was awesome! Ian my photographer friend (by the way check him out at was there taking photos of everything! We even had an officiant and it was a very close family friend who I've always wanted to officiate our wedding. As I stood up there listening to the wonderful and perfect words he had I remember one thing most, in between shaking and thinking I may pass out that this couldn't be more perfect! Something I stated many many many times that night! Then Eddie said some amazing vows. I was so taken aback by the smooth and amazing words coming out of his mouth. I couldn't take my eyes off of him. This was a moment that I am having trouble explaining. I've watched a lot of friends and family get married and as wonderful as it is I always think, "how can they tune everything else out like that" Now I get it. Something happens, you just do. After lots of hellos and hugs I sat down at the wonderful table. Everything was so beautifully decorated and there was even borrowed, blue, old and new items and a amazing cake designed and made by a friend and even a garder and bouquet. I couldn't have picked better decorations. Thank god for Pinterest since my family stalked my Pinterest pages and found everything I loved! The night was so perfect! Every once and a while I sit and think about it and think WOW, did that really happen?  I've never felt more married and I have never been happier! 
Amazing photo Ian at Nemesis Photo took

Me and Daddy

Saturday, March 16, 2013

Hi my name is Kristin and I'm really bad at updating!! PART 1

I won't even apologize for not updating. Plus worst part is so much has happened. So this may be a multi-parter this week. So let's start from where we left off! So after the last time we "spoke" we started what I like to call the two months of craziness! Everyone's been taking turns getting sick. The end of January marked Annabella's birthday so we had a big party for her at the bowling alley and it was a huge success! She had a blast with all of her friends! She invited all of her "boyfriends" from school and was quite the 'teenager" the entire time! Wow, what am I going to do when she finally is a teenager? I'm thinking boarding school.

Bella and her two boyfriends!

Later that week we headed to Shriners to pick up Eddie's AFO's (ankle foot orthotics), which by the way are totally adorable! He immediately found his comfort zone and became much more stable with them on while he was on his feet. Obviously he has to hold to hang on but he is way less wobbly. 
Eddie's new AFO's

Then on Wednesday we headed out to Boston Children's to have Eddie's re-do of his urodynamics done.  We were pretty nervous since the last one we had done here was so traumatic for both little Eddie and myself.  Much to our surprise it was so much easier! They had way more staff on hand, an Elmo movie for Eddie to watch and it was as calm as possible.  They even were able to add an extra test that Shriners didn't have access too which was reassuring to us that we were in the right place.  The urodynamics confirmed the diagnosis of Neurogenic bladder with reflux to his right kidney, but they decided that it was a very tiny amount of reflux. This means we are back to cathing 4x a day and back on the Ditropan but at a lesser dose. Which by the way makes a huge difference as far as bladder output. With the old dosage his bladder wasn't quite right.  We are also back on the antibiotic every night forever which I'm not quite sure I'm ok with but I'm leaving it be for now. I figure let's get through all this other stuff and address it down the line. The neurological test that was also done was the most exciting part. Well the results were, if you ask big Eddie it was the most traumatizing part for him. Since the probe for the test is a large needle placed in between that "nether" region. Let's just say that big Eddie turned very pale and almost passed out. We actually had to switch places so he couldn't see. Poor daddy! Good news is little Eddie has no feeling there so he didn't feel a thing. It hurt daddy WAY more! Bad news is, little Eddie has no feeling there. As for the results, it gave the neurologist there an exact lesion level unlike the guesstimate that Shriners were able to make. It came back at S2S3 but with less damage than expected. This means that the damage goes up to S2 but that even that damage isn't so bad. If you asked me before I would have told you this too, I am with him everyday and see what he can do. These doctors are going to be surprised when he shows them! I'm not just saying this because I'm his mom and I think he can do anything (which he can) but he really can do more than they think. I've seen it!

Tomorrow I'll post part two so don't change that channel!!!!!!