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!

MRI and Ultrasound Update

Yesterday we had to go UAB for Kaitlyn's MRI and Renal Ultrasound, of course we had to be there bright and early, 7:45 am, which meant getting up before the sun! Not so much fun I tell ya. Not only that but we had to wake her up before 2 for a final feeding, then between 2 and 6 she could have clear liquids, so we again woke her at 5 for some juice. Poor kid, she would have actually slept through the night had we not HAD to wake her. Oh well.

Once we arrived, we went for check in and then for the MRI but they had the ultrasound tech ready, so we did that first.  She did so awesome, just laid there and let her do her job :) I thought for sure by 8 she would be screaming her head off for food. Nope! So after the ultrasound was done we headed for the MRI, took awhile to get ready but the worst part was K getting the IV.  That was the only time she cried.  We were done with that within an hour or so, then it was back to the clinic to wait for the doctor consultation and test results.

Our neurosurgeon came in and asked how things were going etc and told us that everything looked fine on the MRI, this was just a baseline for future reference since her surgery. The only thing that could be "somewhat" troubling is that children that have tethered cords have a 5-10% chance of  re-tethering and because of her lipoma, her chances are in the higher range.  There isn't really anything we can do to prevent it, so we'll just keep an eye out in case things start to happen that weren't before. If it does happen and it's not caught, it could cause nerve damage.  However we're not thinking about it right now. I know there are still a lot of possibilities that could happen, but I can't dwell on it.

Next came our urologist,  pretty much same deal. The renal ultrasound went fine, he wasn't to concerned over anything and again we're just keeping an eye on things if something changes. He too agrees we do not need to come back for 6 months unless something comes up. So as of right now we are set to return on April 18, 2011!

I was glad to get good reports yesterday as I had not been sleeping well the last couple nights. Everything is back to "normal" today and look forward to some doctor free months ahead!