Monday, July 28, 2014

2 words together... 3 syllables... One happy mom!

Many of you know that Madison has been in speech therapy for over a year now. While she has made progress, I feel like she should be farther along than she is. Her speech therapist said she is making slow, steady progress. Better than nothing, right?

Well the past couple of weeks she has been doing so good! If you prompt her to say something, she usually at least tries - even though a lot of times the sounds aren't necessarily the same. She really has been saying more on her own, and that makes me so happy! She also does some signs (like for more, all done, open, I want, please, thank you, eat, etc.) The other day she said "I want IPad please!" Even though she was asking for the iPad, she said I want together & then IPad please together. She has also been asking for it unprompted now.

Tonight we were looking at a book & she tried to say butterfly. It didn't sound exactly like it should, but she said all 3 syllables together! Yay!

She's also trying to count & say her abc's! She especially loves saying five, I. O, and Y.

I know to a lot of people this may not seem like much, but Madison's expressive communication has been (and is) really behind. So even the small victories are so exciting! And I love seeing how proud she is when she knows she has done something new!

Thursday, July 10, 2014

Doctor Appointment Updates

Madison has had several doctors' appointments in the last couple of weeks, so I wanted to post an update on where we are at now.


She saw her orthopedic doctor last week as a 6 month follow-up. We have had concerns about possible scoliosis with her as well as part of her ribs sticking out more on one side than the other on her chest. Her chest looks a lot better, but I still can see where it isn't symmetrical. The doctor said he expects as she gets bigger & grows that it will become less noticeable. If it doesn't, however, we could reach out to a general surgeon to get it evaluated. Her back x-rays looked better, and he didn't see any signs of scoliosis in the spine, so that is good. However, she still has some rounding in her back that is in her muscles, so it makes her back look curved. We are working on getting more flexibility in her back & legs in physical therapy, so hopefully this will continue to improve. The orthopedic doctor did release her though, so that's one doctor down!


Today we had several appointments at Vanderbilt. She had a kidney ultrasound & VCUG (kidney reflux test) done this morning first. She did ok in the ultrasound once we got an Iphone out, but she was not having it in the VCUG test. Bless her heart, though, I can't blame her! For the VCUG test, she had to lay down & they got x-ray pictures of her using the bathroom. They had to put a catheter in, fill her bladder up with liquid/dye, and then wait for her to pee. I was about to cry watching her - I hated it! (and of course we had to help hold her down, so that makes it worse). For those that don't know, they were doing the VCUG test because Madison has kidney reflux. So when she uses the bathroom, some of the urine goes back up into her kidney. This increases her risk of getting a UTI / bladder / kidney infection which we want to avoid at all costs because she just has one kidney. So we want to take the best care of that kidney that we can. She is on a low-dose daily antibiotic, and that has seemed to work so far. However, if she were to get infections, it could cause scarring on her kidney (which could lead to problems in kidney function as well as high blood pressure).


The reflux test showed that her grade of reflux has worsened from a 2 to a 3 (on a scale of 1-5). Typically, they see children start to grow out of this, but so far Madi's has gotten a little worse. So they are referring us to go see a urologist to get their opinion on if her kidney is protected on the antibiotic she's on, or if we need to look into the option of her having surgery to correct the reflux. So we are waiting now to get in to see urology.


She also has a GI (gastroenterology) appointment today, and it went fine. They are just monitoring how she's doing on her acid reflux medicine. There's a good chance she's grown out of her acid reflux by now, but because she has had so many airway issues & has a narrow airway, they want to protect it. So they will either start weaning her off the medicine soon to see how she does, or reevaluate in 6 months to see if she still needs the medicine.


Thanks for all the thoughts & prayers today :)