Wednesday, May 23, 2012

We're back!!!

Well we have been very very busy lately! We have moved to a new apartment and have been nuts packing and moving and unpacking. We are finally all almost over that darn cold we had except for baby Eddie who just has a little bit of a cough left.

Earlier this week we noticed that his shunt seemed to be much lower than before. It even slides up really high sometimes depending on how he's laying on it. So I called the neuro just to have him check it out. Sure enough he said it seems to have slipped about 2cm down. He is scheduling an MRI in the next week or so just to make sure all is ok. He said he sutured the shunt to the tissue so it shouldn't have moved and he also said just in case he left about an extra 7cm of tubing into the ventricles. So hopefully all is well but the MRI will tell us more. Good signs are that his soft spot is still looking great (no swelling) and so is his back. A big downside of the MRI is they have to sedate him which isn't much fun. As long as there is a good outcome it's worth it.

That's about it for tonight, I'm totally beat from all the unpacking and organizing so I'm headed to bed. Have a great night all!

Wednesday, May 9, 2012

Hello again doctor!

Another day another doctors visit. At least that is what it seems like lately. My pedi must love us, I think I've single handedly paid his mortgage this month. We visited 4 times in a month. Yes 4 times! We had Eddie's check up, then we visited for a checkup of Bella's feet. Recently I've noticed she has been walking a little pigeon toed and both her ankles roll inwards. The side of her foot actually hit the floor in canvass shoes. She's also been complaining of leg pain. At first I thought maybe I was over exaggerating since I spend so much time staring at baby Eddie's feet. Unfortunately I was right. Her feet or ankles are rolling in so we had to go get her some "good" shoes (we choose a pair of adorable Keen's since they can be worn as sneakers or sandals) also they decided in a few months they'll check her again and probably refer her to Shriners. So..... Shriners did ya miss us? At least we know how to get there.

That was last week, a few days later while we were packing and the baby started fussing so I grabbed him and while holding him noticed he was stinky. Then the craziness began. Both baby Eddie and I were covered in poop! YUCK! When I went to change him I noticed this huge welt on his thigh. It was a big white diamond shape and red all around it. I freaked out and called the doctor. Their guess was a latex reaction.
The next day we noticed it was almost secreting something. Like a sore. I've never seen an allergic reaction like that so back to the doctors we went. Surprisingly this new sore like reaction only confirmed a latex reaction. So I've spent the past couple of days researching latex and racking my brain trying to figure out how he came in contact with it. Finally today I think I figured it out. All this duct tape while packing is all latex adhesive. I could have easily ripped a piece then touched him or even airborne. My poor kiddo.

Good thing is this gross cold is slowly making its way out of this house. I'm thinking once the sun comes out this weekend we'll all feel much better. I'm thinking a giant pancake breakfast is in order! I can't wait!

On a side note, I just want to thank the amazing support group we've had. Everyone from family to friends to even friends of family and friends. I feel like we are lucky beyond words and are so grateful for everything you have all done! I was looking at our new family portrait I had framed for the new house and both Eddie and I noticed that it seems so perfect. That's because we're so complete. I see our little family and feel so complete and at peace. I've never been happier or more grateful for what is in my life. It's been a very difficult road for Eddie and I even before the babies diagnosis, I feel like we couldn't be stronger. This is thanks to everyone whose been there through it all. Thank you!

Thursday, May 3, 2012

1,2,3 breathe!

What a week! We've had everything from anxiety to sighs of relief to excitement to exhaustion! Which all in itself is EXHAUSTING!

Let's see, where to start well anxiety... Last week Eddie had an interview for a new position, it's exactly what he wants to do for a career and the perfect position for him. It's in CT but that's ok we can make that work.

We had a sigh of relief when we saw the babies tiny ventricles on the ultrasound (see last post) and a bigger sigh when we spoke to the neuro a d he gave us a green light to relax! No ultrasounds for 6 months or neuro visits unless something changes. We'll have a baseline MRI done then. I can't believe that things are calming down so much. 6 months ago I could never have imagined weeks with no appointments and a day without having to look over my shoulder. I'm now feeling like its easier to breathe. (I'm sure that some of that is thanks to baby Eddie sleeping through the night most nights!)

We are very excited since an apartment we've been really interested is officially ours! It's so perfect for us and accommodates our family perfectly. It's even really accessible in case we say a while and little Eddie has assistance devices. We're moving in really soon so the next couple of weeks will be full of packing!

We've also signed up to be a part of the Spina Bifida Association of Greater New England's "Walk and Roll" on June 16th. We are excited to participate in such a great organization. Check out our team page and please consider walking with us or donating.

Now to the exhaustion! Bella had been sick with a cold which has been no fun at all! Tonight she seems to be feeling a bit better but unfortunately baby Eddie seems to have caught it. I guess I'm lucky that he's gotten this far in cold season without catching one but I'm very freaked out about him getting sick and having the shunt. Inside I know that a cold is just a cold but this being the first time I'm a bit nervous. So between that and waiting to hear about the job for Eddie I'm all anxious again. Geez!

I'm learning through all of these trials and tribulations that I can't control all things and to just sit back, relax and let the universe guide us.