Thursday, June 16, 2011


As I sit down to write this, it's a relief to not have to write any medical updates on here (knock on wood). 

I love summer time.  I never knew this before this summer, though.  I love being able to come home from a long day of work and not have the stress of homework, and dinner and baths and early bedtimes.  We can relax.  We have time to breathe.  We get some much needed extra time in our day. 

This summer will definetly be a summer to remember.  We are about to embark on a life changing journey.  In just 9 days we are heading to Anaheim, California for our first family vacation.  We are headed to the place where dreams are made.  I am lucky enough to be able to get a two for one deal during this trip.  I am attending the National Spina Bifida Conference!  . I am so grateful and blessed to have such an amazing support system of other SB moms and families and I will finally get the chance to meet some of these wonderful people.  While I am at conference Evan will be a Spina Bifida kids camp.  I realize that he is young and very possibly will not remember this trip when he is older.  I love the fact that he is going to get the chance to be around other SB kids his own age and observe their mobility skills.  While Evan and I work on our SB educations, Jeff and Lauren are going to be spending 4 fun filled days at Disneyland.  The conference is being held at the Disneyland Hotel, which is where we will be staying, so it only seem fitting.  I am so glad they will get this daddy/daughter bonding time.  Evan and I will join them for the last 2 days at Disney to end our amazing trip.  One of the best things about this trip is that Lauren has NO idea, whatsoever that we are going!!!!  Jeff and I have been talking and planning this trip since January and we have never said a word to her about it.  I can't wait to see the look on her face when we arrive at Disneyland.  The smile on her face is the only way to start a dream vacation!

Tuesday, June 7, 2011

Spina Bifida Clinic Update

We had our first Spina Bifida clinic in a while today.  We were supposed to go in February but it was right after Evan had been in the hospital for 10 days and I just couldn't imagine spending anymore time there, so we rescheduled and today was the next opening they had.

I have a love/hate relationship with Spina Bifida Clinic.  I hate the long days.  I hate the worry I have for days before.  I love seeing the doctors and nurses who we have gotten to know over the past year and a half and I love seeing other SB families and often meeting new ones.    Today we met a new little girl named Lilly who is 3.  Her mom brought her down the long hallway in her stroller, stopped, Lilly got out and walked over to the rehab nurse.  A new accomplishment for Lilly in the past 2 weeks.  I am thrilled for Lilly and her family. A take that, SB, moment!!!!

We have had some concerns over the last few weeks about Evans right hip.  Although they are both displaced, there has never been a concern since they were symmetrical.   After some x-rays today we realized they are still symmetrical but he may need to have a surgery done on some of the soft tissue to help the rotation of the right hip.  We are planning on making an appointment with our Ortho doc to discuss this further.

After several weeks of waiting we finally got the final results on his renal ultrasound.  He is having some very minor reflux and so they are going to up his medications, which he was due for anyway because of his great weight gain.

We were also informed that it was finally time to get an official MRI of his brain and spine.  This time he will have to be sedated for the procedure.  Not a huge deal in the big scheme of things, but I hate the thought of him having one more thing. 

Overall, clinic went well.  It wasn't as long as it sometimes is, but we came straight home and both had a good nap.  Now we are off to enjoy the great weather outside!