Thursday, October 13, 2011

Clinic Day

What an experience. We took K to her first Spina Bifida Clinic day on Wednesday, and it was interesting to say the least.  I wish we had been a little more prepared on what would happen that day, besides the general you'll have the testing done and meet with the doctors later.  Um yeah, I didn't realize it would be an ALL.DAY thing. We left the house around 7ish and got home at 6 that evening, to say we were exhausted is an understatement.

So where to start, I am not sure. I mean overall things were OK, not great though. I was really hoping for better news in all honesty, but that's not quite the case. We got through the ultrasound and x-rays just fine, the test we were dreading, was the urodynamics test. What should have been awful for K, was not.  Now to most that sounds good, but unfortunately this should have been quite unpleasant for her. Bottom line, she is starting to lose some sensitivity, which means less bladder control etc.  So now we have to cath her about every  4 hours to help make sure she is emptying her bladder completely, and we have to start her on ditropan.  I knew this was a big possibility since it is common for sb babies, but she had been doing so well, or at least I thought. 

That was really the biggest news, but in turn caused a little concern about her possibly retethering.  Not good, that could mean another surgery. We did not see the neurosurgeon, he had a surgery and then wanted to get a MRI done first.  So now we go back at the end of Oct for the MRI and then head over to talk with him and get the results. I am praying so hard that she is not retethered and needs surgery again.  

On better news the Ortho Dr and Rehab Med Dr, gave us good reports. Said she's doing well overall, she is doing well with the braces, has decent range of motion with legs/feet etc. One even said they thought she would be walking by 2 yrs old.  Still about 7 months way, but I am trying to stay positive.  Ortho suggested we get more PT than once a month, and maybe some OT too, so I'll talk with UCP here and see what we can do.

We also found out about a program in Alabama that helps pay for braces, supplies etc, and we qualify just because of  K's SB, so now we have to get all that started and hopefully that will help pay in the future on some of this stuff.  So now we wait.  Waiting for Oct 31 is going to feel like an eternity.

Monday, October 10, 2011

Where to Start?

I don't even know where to really start this blog post, I am really behind as you can see, since I never even posted a birthday entry. :/ I feel like a terrible mother, but know that I shouldn't let blog postings make me feel that way.  I am going to do my best to catch up on here in the next couple weeks, so you most likely will see updates from May until recent.  I know other SB mama's understand, sometimes life just gets in the way. 

For the sake of time today, I'll just post what is going on right now.  K has her 1st Spina Bifida Clinic on Wed, Oct 12. Yes I know for most that seems strange, since a lot of you have been doing Clinic days since your little one was born.  It's new to us, I still feel like we're having to get through this by ourselves, with out much help or guidance.  So come Wed, we get to have all kinds of fun tests, renal ultrasounds, urodynamics, and x-rays done, we're skipping the MRI this time (not our choice).  We are seeing our normal Urologist & Neurologist, but also seeing Orthopedics & Rehab Medicine.  Not sure what the last one is for.... any insights?

We're still working on strengthening her ankles, she's much more steady now with the braces. She cruises furniture, can push toys along and walk holding on to our hands, but not steps or standing by herself.  We're still doing PT twice a month, we have an appt today in fact.  PT mentioned bringing a walker, but not sure if  she remembered or not. We'll see. 

K is now 17 months old, I just can't believe she's almost one and half! My little baby isn't so little anymore, she's gaining weight and getting taller and cute as a button.  She's saying and/or trying to say more words, and signs all done, more and eat very well and uses them often.  She loves her sisters and loves they play with her and definitely misses them while they are at school. 

Last week we checked out a new playground here called "Everybody Can Play", it's awesome and K will love it even more when she's a little bigger.  It is wheel chair accessible, has astroturf in the jungle gym area, great swings, shades and hopefully next summer a cool new splash pad! She had fun playing and we can't wait to go back. :) 

I'll be back later this week with updates on our clinic day.

Oh I totally forgot! Last month I met 3 moms with SB kiddos! Two of them have kids just a few months older than K, so it was really awesome to talk with them and see their kids, and they are ADORABLE! I'm trying to start our own little local support group, so hopefully I'll meet more soon!