Kiya had her Birth to 3 evaluation on Tuesday. It was over nap time but she did great. She was quieter than normal but she did show off a little too. She followed simple directions, like go get your baby or can you bring me the ball, etc. She completed a shape puzzle, she sang the ABC song, kicked a ball, rolled a ball, she pointed to pictures in books, etc. She even used her push walker toy when asked and dumped out the contents of a small bottle and put them all back in.
The Early Ed Teacher was impressed with Kiya's problem solving skills. The physical therapist thought Kiya was making nice progress. She commented on her rolling in on her ankle and gave us some suggestions. She also noted that since Kiya has only been crawling for a few months, she may not be ready to walk just yet. She was excited that Kiya will walk a few steps independently between her chair and another person or between two people.
So now we wait for the report and see if she qualifies for services.
Ortho update and frustration are tied together. We had Kiya's ortho appointment yesterday and if the doctor was in the room for more than 5 minutes that would shock me. He called her Anna and was VERY brief. He said he was pessimistic that her curve would get better. He mentioned body casting and back braces and asked what we thought. I immediately asked what body casting would entail and got no answer. The doctor responded with well we can wait 3 or 4 months, repeat x-rays and make a decision then.
I expressed my concern that Kiya is making progress on walking and catching up to her peers and asked how either of these treatments would affect her mobility etc. Again no response. We got the wait and see, a handshake and he left. That was it. Nothing else. I was really frustrated. I had more questions than answers at that point.
Why is it that specialists have to be pompous jerks? Seriously, this is the second specialist we have seen that has ZERO bedside manner. No wonder Kiya wound up screaming at him.
I do believe we were the doctor's last appointment after a VERY long day and with Kiya screaming it was probably just enough to make him want to run fast out of that room.
We did discuss Kiya's right foot also. He wasn't concerned. Yes she rolls in on her ankles but he doesn't think it is that bad. The physical therapist disagrees and recommends an ankle brace or having Kiya wear her walking shoes in the house. So we are going with that. She has been wearing her shoes more in the house as she is less likely to roll in on her ankles with the extra support.
Once we got home, I did some research online about types of braces, etc. I know typically not a good idea but in this case it made me feel better. The braces aren't nearly as scary as they sound and some even are designed to only be worn at night. Most modern braces will allow her to have full range of motion and just be a kid. This was reassuring. There is one scary looking old school brace that I want nothing to do with but if that is what is best we will cross that bridge when we get there. I am seriously hoping her type of curve will work with one of the night time braces but we shall see.
Sigh. Really that is all I can say at this point. Sigh.
4 comments:
Oh, I hear you on specialists!! I fired our first cranio-facial team for Katie because the Dr was a pompous jerk who didn't answer my questions and was in the room less then 5 minutes (we drove 3 1/2 hours to see him)! Anyway, sorry you are having to deal with this on top of everything else!
I have followed your blog for a little while.I have kids adopted from India and China. Sorry to hear about the specialist appt. My daughter has multiple ortopedic issues and we see a specialist at Gillette in St. Paul, MN I dont know where you live or if that is a possibility. I too had a doctor that would not give us the time we needed for discussion etc and we found another one. Especially when you are going to have an ongoing relationship with treatments, etc it is important to find someone you can talk to. I dont know who else is in your area or if your insurance would allow you to go Gillette or Shriners but you deserve to feel heard and to have your questions answered. Good luck. Diane
Do you do baby massage with Kiya? I am sure she would love it if you don't already. Her little body is working so hard, maybe it could help both of you relieve some of the tension surrounding these challenges and be a great, great, great bonding opportunity too!! I bet your PT might have some insight, if not you could call a massage therapist and have them give you a tip or two!
Hugs as you navigate the sea of pompusses. Keep your chin up, you'll find your doctor!!
Ugh, I hope you find out more soon. How serious is her scoliosis? I only know from my personal experience, but mine is pretty bad. I had no treatment and life goes on as normal for me. I know that one person's account doesn't compare to someone elses, but just wanted to give you some hope. Scoliosis as a lifetime issue can still lead to a very normal life without braces/casts, etc. Not that I am against them...just trying to shed light on the other side of things too. I hope you find doctors that can better answer your questions and find the guidance you need. Hugs!
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