We have been blessed with the fact that Arianna has done so well with her gross motor skills that she hasn't needed physical therapy, except on an as needed basis. Since we are looking at losing our therapists we had one more visit with our PT this afternoon.
The past month or so Arianna has complained about leg pains at night. You can recall in my ortho appointment update that he didn't think this was a big deal. Well I have always been concerned about it. Not once did he suggest getting an x-ray or even do a full exam of her ankles. He said as long as she isn't complaining during the day then we should be okay.
Well...the past 2 weeks she has been complaining of leg pain during the day. Anyone with a child that has 22q knows this is a common sypmtom with our children that seems to frustrate many of us. Most of the time it's unknown what causes these leg pains and our children just suffer.
I have felt deep in my heart that something more serious was going on with her ankles that needed further care but I'm trying to let doctors be doctors. (Sorry Mina...you know I love you) However, we already know she has tibial torsion, ankle pronation, flat feet, low musle tone and hyperflexible ligaments (can't think of the medical term).
Seven months ago I asked about getting inserts for her shoes and the ortho said "no" but I could try and find better shoes to support her ankles. We found a place that can put in arch supports on any childs shoe and we got her a high top shoe.
We go back 6 months later and show the ortho the shoes and he tells us, "well she indeed has all of this medical stuff wrong with her and if she doesn't wear the shoes you got her I'm sure she will me in more pain." That irritated me to say the least. Why wouldn't you do more to help my child if you know all this is wrong?!?!?!
So our PT saw us on the news clip the other day and the first thing she tells me is, "So....I see Arianna is still W-sitting. This is really not good for her joints.
This is W-sitting.
I have noticed this week her right ankle pronation (inward turning) is getting worse and feel like no one is helping me on this. She palpated her knees and could feel some creeking going on with her right knee and tibia, which is not a bad thing, but it's also not good. This means she is damaging her joints. So...after everythin she said there are orthotics that can be specially made for children with Arianna's conditions and she is shocked Arianna hasn't already had them made for her. So, she came out this even and evaluated her and wrote up a nice note for me to give to our ortho recommending Arianna gets a Cascade SMO orthotic.
No, the cute frog doesn't come with it!
We weren't suppose to go in for another year but I feel this needs to be addressed or we will be seeing another ortho. We are scheduled for April 1st so we are hoping to get some answers and help then.
I've been trying to get pictures of Arianna with all her doctors and therapists so when I finally get to scrapbooking. Here is a wonderful picture of Arianna and her PT Diane.
You think Arianna likes her?
Besides all of this, earlier we went to a rally today for the Arizona Early Intervention Budget Cuts and got to share our story with them. There is talk that they might not cut this program because of all the fuss we are making. Keep your fingers crossed!!!
7 comments:
OK Vanessa, I won't take it personally :)
Can't go wrong if you look out for your girly, who else will? I hope you get better answers at the next appointment.
Shay has SMO's she has had them for almost a year and they have made all the difference with her walking. SHe loves them and wants them on all the time. SHay's are really cute they are purple with butterflies on them the picture you have posted is different then shay's they are the same height as the picture but she does not have the velcro straps around the top.
Keep up the great advocacy - how great would it be if they save that program??
Fuss, Momma, Fuss!! If it keeps the program going, you keep up what you're doing! Like Mina said, if you don't look out for who will?!
Glad you're getting some back up with the braces - gotta love those therapists!! (Remember, I was a PT Assistant for 10 years:0) )
Hope you're having a good weekend... give Arianna some hugs from us!
I really hope you get the help you need and you keep on fussing. I wonder why they will not do an X-ray I mean what is it going to hurt??
Elizabeth sat in the "W" position all the time and with therapy she fianly stopped sitting like that. At her age she should not be sitting like that anymore. Is there anyway you can get a second opinion . Good Luck
oh girl..if Isaac will EVER stand..i'm sure he'll need some of those too! He's hyperflexible too...and does the W sitting (bad thing). I can't believe your ortho. Maybe you should get a new one...
We've only seen ours once..but, he seemed nice enough...for NOW!
But, we're getting fitted for leg braces next month...yippie! Isaac will be able to chase Arianna one day!
and good for you guys for making a stink about the early interventions program cuts...how dare they?? It almost makes me sick to my stomach to think of what our lives would be like without the early interventionists, therapist...all the support they give the kids and us parents.
and the pic of her with all the hairbows on the floor...don't tell her, but it made me giggle!
I'm so glad you have such an awesome PT who is calling the doctors out on things. Way to get Arianna the help and resources she needs! And how wonderful if they can save the birth to three program. Yay!!!
I hope you guys are having a good week..xoxo
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