It's been so long since I posted

I couldn't even remember my password to log in.

Not a lot has happened. My mom was here for almost 9 months and then my in-laws visited for a month. It was nice to have some help around with Ana. She liked them around, too. I thought she would have hard time adjusting to other people in the house, but she was just fine.

We're still working on the same things, sitting up independently, using pictures for communication, etc. Her fine motor skills have improved a lot. Her OT uses an Ipad with her and she's doing great (cause-effect, eye-hand coordination) (she is not able to use for communication yet), and I'm trying to get funding for one, but I'm having no luck.

I wanted to try hippo therapy (the insurance covers it) but our developmental pediatrician thinks she needs better trunk control for it, so we'll wait, maybe in 3-4 months.

In short, that would be it. Till next time.

Gait trainer

I just wanted to post a photo of Ana in the gait trainer we use at PT. This is actually the first time she sort of stands in it. Before, she used to hang in it, screaming and crying. She is not taking steps, but even this is a great improvement from where she's been.

Some updates

So, I have disappeared for a while... um... a couple of months. I don't think I've posted since my mom got here. She's been of great help, and she's having a great time with Ana. I finally joined a fitness club and started yoga and pilates. I'm so out of shape.

Not much going on with Ana. She's doing great in therapy, we're now using Rifton gair trainer at PT, and she stands in it (not taking steps yet) for about 15-20 min. At home we're using the Tristander for about an hour daily.

I decided to try HBOT for Ana, so we'll be going to St. Petersburg, FL in October. There's a place that offers free HBOT and you just need to donate what you can. I was planning to do this about a year ago when we were told that she has CP, I have scheduled the treatments, but then, when we got her CMD dx I canceled since I thought it wouldn't be beneficial. But lately I've been thinking about it, and then I read a blog for a child who has a similar condition and he's been receiving HBOT for a while now. His parents report great improvements. So I gave it another thought and since it can't hurt her, we'll try it out.

Equipment wise, we're waiting for an adaptive stroller (Stingray from Snug Seat) and a bath chair. I was thinking of maybe getting a Special Tomato Sitter (only the seat, that goes on a regular chair), so that we can use it while in St. Pete.... why is SN stuff so expensive??

Until next time.

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Thanks,

Its' been a while

It's been a while since I last posted here. Updates:

1. My mom will be here next Wednesday!!! Yup, you read that right. I'm beyond thrilled.

2. I have a job interview next Monday. Hope all goes well there.

3. The Tristander and the Kimba are on their way over here. Yee pee. Estimated delivery is Thursday.

4. One of my husband's clients turned out to be a social worker in a SN school. She offered to find some equipment for us. Wouldn't that be great!

5. We'll be placing a request to the insurance for a bath chair (Rifton) with a shower stand.

And a request for either Rifton activity chair



or Snugseat X Panda




We'll be trialing them both next week.

Little miss sunshine is doing fine. Getting more vocal (read: screaming) when she gets frustrated. I think she finally realizes her immobility and gets very agitated because of that.

Therapy is going fine. Our OT will be leaving, moving to Atlanta, and our ST will be on maternity leave during the summer. I hope Ana handles the changes well. Here's a photo from today's PT session:




Oh, I almost forgot. I will be attending CMD Family Conference in August and as a participant I was asked to raise some funds that will help cover expenses related to the conference. If you are interested in becoming a benefactor, please let me know and I'll send you the benefactor letter.

Until next time...

My mom will be here in June

Did you hear that? She'll visit us for the first time in 6 years. Not that she didn't want to come earlier, but she was denied visa by the US Embassy 3 times (on one occasion I was in hospital (bed rest) for 10 weeks and naturally, she wanted to come and see her daughter. "No no". Consular officer says. "You're a potential immigrant". Well, she wasn't a potential immigrant at that time, cause she had no intention of moving to the US, she wanted to come, see where we live, and go home after a month or two.

Now she is. Since I'm a US citizen, I filed a petition for her and she'll be getting her green card next month (interview in May). She'll come and live with us, and help with Ana, so I can finally go and get a job (yeah, wish me luck with that, with the season being over in South Florida). I really look forward to her coming here.

Follow-up on the appointments

Physiatrist: we saw a new doc, I've been trying to get an appointment with her forever, but the waiting list was 4-5 months. She is a medical director of the Early Development Center at Memorial Regional and evidently, quite popular. A very nice lady. Gave us a script for AFOs and night splints, poor Ana, she'll be in orthotics all the time now. She advised us to see an orthopedic surgeon, for hips and spine, to do a baseline X-ray of both.

Ophtalmologist: He thinks Ana prefers to use left eye over her right, which might eventually lead to decreased vision in right eye. So he highly suggested eye patching. I bought patches, but I doubt Ana will tolerate something like that. She hates it when I even wipe her mouth.

MDA clinic app was rescheduled for May, both doctors are on vacation.

I'm tired today.

Until next time...