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!