Time

Time, where has it gone? I keep meaning to come and post updates, but honestly with summer here and all 3 kids home and the various activities they have going on, it's not much time left. I am exhausted by evening time, so it's put them to bed and veg out for a bit.

So a mini update will have to do.

Kaitlyn celebrated her 2nd birthday in May! We have a small party at a local park that is accessible for everyone, that was nice. She got to many toys and ate way to many cupcakes lol but she had a good time.

 So as you can see she had a great birthday, fit enough for a Princess who loves Elmo. :)

Kaitlyn has been doing really well healthwise, we've been lucky to not really have any appointments for her since clinic in April. We have been to the orthopedics guy, she got new braces, finally! We've only been trying to get them since April, um yeah. However they are great there and came up with a solution for everyone.  You see when we went to clinic in April they suggested straight non moving braces for her, because she "crouches" some when she walks.  Our physical therapist (PT) here said that hinged ones would be better because she sees her all the time and she knows better.  Oy. So we talked to the ortho guy and he had a great solution, braces that have an adjustable strap on the back, so they can be completely solid, no give or more hinged with some give. Yay. So fast forward to a few days ago when our PT saw her, she said she is kinda of crouching. WHAT??? you've got to be kidding me...I noticed it, but thought that it could just be the way she walks. Sigh.  So basically she suggests to pull the strap tight a few hours a day and then loosen back up to let her adjust to it and to walk better.  I'll be interested to see what the guys down at the clinic think in October.

We're still doing speech and physical therapy twice a month, so every week we see one of them and then we finally, after 6 months of waitlist, got into the UCP playgroup on Mondays. She cried so much in the beginning, but has started adjusting, this is her 4th week and she only cried for about 5mins they said. So hopefully next week will be even better. The great thing about the playgroup is they have all the specialist there, speech, pt and occupational therapy to help and it's FREE! They age out at 3, but also have a preschool readiness group I hope she can get into next year.

We won a local photo shoot contest, here are a few of my favorite shots of my baby, who isn't so much a baby anymore.

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