Ok to all who are waiting patiently and not so patiently here are the latest details in the Chloe Chronicles.
We are STILL waiting on the confirmation on the go ahead to get her blood work done. BUT the nurse Caroline is back at the office and the very saintly secretary Tracy put our paperwork at the top of her to do list and so she has been working on it and called yesterday to tell me that she is still waiting to hear back from the geneticist that is employed by the insurance company or the insurance approved lab. I'm not sure which. anyways, the deal (I think is) that we may have to travel to Augusta or Atlanta to get the blood drawn. Please don't ask me why, you may however ask me for Coventry Insurance's number to ask them yourself. :) At this point I don't really care, just tell me what to do and I'll do it.
Today we had a speech and feeding evaluation. Her feeding looks great, she is mechanically doing everything as she should for a kid with 4 teeth. Her speech and communication skills... not so good.
I know I should have been prepared. I knew what the lady was going to say before I went to the appointment. Still, the evaluation, any evaluation is a professional holding up the measuring stick and saying your kid should be ^ and instead they are _ here. Maybe I'll get used to it. but right now it stings a bit. Ok deep breath.... Ok so facts: she is on level with a 6 month old. (she is 16 months old btw). The therapist was very nice, she is told me she is going to write up the report and then think about and write out a course of action. Both of which she is going to send me. Here's the kicker. because Chloe is SO far behind she wants to have Chloe come in 3 times a week for a few weeks to see how much progress she can make with her so that she can then better estimate a feasible long range plan. That makes great sense and I would be on that like white on rice... but.... Coventry only pays for 20 visits of speech and occupational therapy COMBINED for the year. And she needs to get occupational therapy to work on her fine motor skills as well as a host of other things. Seeing the progress she has made with her physical therapist I am a true believer in therapy. I was a total skeptic when I went in but seeing her improvement in such a short time... Its really amazing. And incredibly frustrating. The very kind speech therapist told me that once our speech therapy insurance runs out they have a sliding scale payment plan they can put us on. NICE. till I found out how much the minimum payment is. $45 a visit. at 3 times a week that's.... ok you can do the math and it literally makes my head hurt to think about it so....
But this is what I know for sure. Everything belongs to God. He can make a way where I see no way IF that's what He wants to happen. I am trying desperately to allow Him to direct my path and not me and my overly anal control freakish habit of taking control and having 5 contingency plans. So I am going to consciencely sit back and wait on God. ok ok not sit back and do nothing. I am going to do stuff but I am going to try and do them in a way that leaves room for His guidance.
Devora (the therapist) did tell me a few things that were new. One she said that not only is Chloe is behind in development but also in everything. looks, the number of teeth she has, height, everything about Chloe is behind. I don't know why that made me pause but it did. I know that. I can see that, but I felt almost like God was saying remember this for later. I don't know. Anyways, she also said to use sign language for everything and then when speaking to her and communicating with her I should use the hand over hand technique in teaching her the signs. Example: I have a cookie and I know that Chloe wants it. I ask her if she wants a cookie and make the sign for cookie, then I say just cookie while making the sign, then I gently take her hands and make her hands make the cookie sign while I say it again. as soon as "she" finishes making the sign for cookie I praise her like she did it all by herself and then I give her the cookie. Thankfully I have a wonderful friend who knows ASL and is willing to teach the whole family!!!! She's such a really cool awesome lady. The boys are uber excited to learn a "new language" and talk in code. I'm excited because the therapist said it MIGHT reduce the screeching which is just about her only means of communication at this point. I try not to get frustrated at the constant screeching, I know it's her way of talking to us and I try and imagine myself trapped in my body wanting to make myself understood but not being able to. (I think I would just keel over and die like a pigeon after you feed it an alkaseltzer and rice). However the high pitch of it is starting to give me headaches. Praise God she is a happy baby because if she were more demanding.... I would be a share holder in Excedrin.
Also she started doing something she has only done once or twice before. Biting to get attention. I will be holding her talking on the phone (once with an insurance person and twice with the ASL lady) and she will just lean over and bite me. Telling her no gets me a blank look. It's like when she reaches for something that she isn't allowed to touch and you tell her no. there is nothing there. You can tell her no, say it firmly, pop her hand, whatever it has no effect and she doesn't have that look in her eye like "hmmm I wonder how far I can push this???" nope, nothing, nada. So telling her no biting isn't registering with her. Maybe I could cover myself in hot sauce...LOL. Just kidding.
Also, last week we got her fitted for SMO's foot braces. they come just above the ankle and they are to help the position of the feet as well as stopping the leg muscle from rolling over the ankle bone and also her flat footedness. We should be getting a call about when they are ready very soon. maybe tomorrow or Monday. They had to make them especially fitted to her feet so they will not fit anyone else in the whole world. And I got to request a colour or a pattern. I am a plain Jane so I picked a light pink. Nothing fancy or crazy but a little girlieness.
Ok well this post is long and I am getting tired so.... tomorrow I will finish up with the big hurdle. Schooling. and where we stand on that.
Hmmmm I wonder if I could write to Oprah and ask her if I could have a million dollars. You know she wouldn't miss it, she's got billions. just a little old one million. it's probably what she makes in a day in the interest in her bank account. LOL. oh what I could do with that. HA I bet I have a better chance of willing the lottery (and I don't even play hahahaha), plus if I had all the money for Chloe's therapies, equipment, etc. what would I have to blog about???
Anyways, if you're still reading this. Thank you for reading my late night rambling. Your love and prayers and calls and generosity is so appreciated. I know that compared to the world scheme of things my life events are really quiet small, but they are the world to me. So thank you for caring about my world.
1 comment:
Oh Jessica, i AM caring.
Post a Comment