Good News

We took Miss K to UAB yesterday for her Spina Bifida clinic and everything is great! She had a renal ultrasound done and some x-rays and kidneys look good as does her hips. YAY! Such great news, they were happy to see she is walking more with and without the braces and walker plus she was in a decent mood so she didn't completely ignore and fight to move away from them the whole time.

We have a prescription for new braces now, so to get in touch with our insurance places, call and get an appointment and go get her casted. I am looking forward to this because I am very curious to see how the custom braces vs the ones we've been using change things.

Will update more when we get everything ready to go! :)

Walking & Talking

Miss K has been in PT for 9 months now and has come a long ways since July of last year.  She was super unsteady then and while she is still unsteady now, she gets around quite well with her walker and not bad without. Of course she still crawls a lot, but she's also on her feet more often now. I encourage her to walk whenever possible so that she continues to build the strength in her legs and ankles. She's able to walk across the room now without her walker, she will go from couch to couch, couch to door etc, wherever she can let go and try she does.  She's also recently learned how to push herself up from the ground to squatting to standing, YAY! That's a huge milestone and accomplishment for her.  Her PT was so happy with that this week. We have some more fun exercises to work on with her to continue her doing that and to gain more steadiness. 

 

Here is my K pushing herself up, she's getting better at it every time :)

Her speech  is progressing as well.  At her evaluation they had her at about 14 months, which was about 2 months ago. We've been working on getting her to talk more and repeat words, which she actually does most of the time for us, not so much for the ST lol . K is really shy, especially around new people, so she doesn't do as much for her as us.  I should record it and show them, so they believe me when I say she does these things.  In the last month I've taught her to sign "open" and "yes" as she always just grunted and pointed and then would get excited for "yes".  She's saying yes and signing it now, so yay for that. She also is using "open" more now, and tries to say it, but it's not quite right.  I know we're on the right track, so we keep working and pushing her.  She's also warming up to the ST and that will help as time goes. 

We head back to UAB on the 11th for her Spina Bifida Clinic, while I am anxious to get it done since we can go forward with getting her new braces, I am worried too.  She has to get the urodynamics testing done again and I hope they say there has been some improvement with her bladder since she has been on her meds.  Thankfully none of the testing that day require any sedation, just some renal ultrasound, xray and urodynamics and that's it. Of course it'll still be a long day, all the testing done in the morning and then after lunch we start our rotation of doctors coming in and out. 

Will keep everyone posted on the results when we find out. :) 

Fish watching at the Tn Aquarium

We're also participating in the SB Bowl-A-Thon this year, you can donate in honor of Kaitlyn by going to this link

General Update

This past Monday we headed down to UAB for K's post op MRI, that we had to reschedule from earlier since she was sick.  All in all everything went great, she did fine during the MRI and woke up a little easier this time from the sedation and we got the all clear sign from her doctor. So thankful for good results! The worst part of the entire process was her not being able to eat that morning or have anything to drink after 8, she was not happy about that.

We're still working with physical therapy from UCP/EI and it's going well. K can walk across the room without her walker.  Of course she is still a little unsteady, but she went from about 3 steps to 15ish on average.  She is so happy when she does it, we cheer her on :) We started speech this past month as well, she's so shy around new people so it's taking some time to warm up.  This time was better than last so I am hopeful the next one will go well.  When she was evaluated by the ST, she said she was at about 14 months in her verbal skills :( but I feel like she's doing much better and more than they think, because she is so shy.  I do think she is behind, I just don't think that much.

We go back to UAB on April 11 for her Spina Bifida Clinic, we get to see everyone (neurology, urology, etc) and it's an all day thing.  Dread that part, but now we know, so hopefully we will be more prepared. Other than that not a whole lot going on, we need to get her new braces soon, custom ones, which will be pricey. :/ but she needs them so we'll have to figure out how to pay.

Today also marks K turning 22 months! I have 2 months to plan a 2nd birthday party for her. We didn't do a big thing for 1st because of all that was going on with my mom, so I hope this one will be better :)