Friday, September 24, 2010

doctors and smart cookies

Well the appointment with the orthopedist is over. I waited a few days to write because if I had written immediately the post might have been full of profanity.
I'll just give you the highlight of it so as to not bore you. The resident came in first and asked me what was going on so on and so forth. He asked me to describe an episode of back pain. I said something along the lines of she cries, contorts in pain, her legs stiffen and convulse and she holds her back and says hurt. His response "Is it possible she has heard you or your husband complain of back pain and is just copying that for attention." Yes, but that doesn't explain the uncontrollable crying, the contorting and grimacing, and the tremors in her legs. Thanks future doctor. Could you send in the real guy now.
Yeah, that didn't make it any better. The other doctor proceeded to tell me that the majority of cases of NF are new mutations (actually 50% are, and 50% are no majority there), that all of her issues with muscle tone, in toeing, inability to run, leading with one side of her body, are all common two year old things, and the best one was that the afo's and de-rotations straps are a waste. I was ready to grab my baby and flee from the room at this point. So to drive it all home before he walked out he said he didn't need a follow up exam and that he would see us in a few years when the NF started causing back problems (it can cause scoliosis but is not guaranteed).
I walked out pissed and doubting my judgement as to why we were doing all of the things we were. However I quickly realized that two other doctors and her p.t. (who have all seen her more than once for ten minutes) seem to think she has something going on and that she needs the devices. So we will stick with their opinion. Oh, and he won't be seeing us again. Ever. If she needs to see another orthopedist it will not be him!!
Now that I'm done talking about that I'll tell you about our smart cookie. I'll start with the fact that Abigail is at pretty high risk for learning disabilities. This thought stays in my head so that I can pay attention and get her help early if I notice anything. But God has reminded me over and over that I need to let go of it because right now, she's fine.
My daughter who turned two less than a month ago can correctly identify colors most of the time. She can correctly name most of her shapes. She identifies the uppercase letters A and B. She identifies the numbers 5 and 8. She knows the street signs for stop, railroad crossing, and do not enter. When she sees her name written she says "A" "B" "I." She knows tons of other stuff, but I am often astounded at how quickly she picks up on things. We haven't really set out to do anything major in teaching her. We have a shape or color we are focusing on each week right now, but all we are doing is making a craft with them, finding them when we are out and about, and playing with that color of play-doh. But she inquires a lot. And when she does I tell her what the color is, or shape, or letter, so on and so on. And a lot of it seems to stick in her brain. She is definitely intelligent.

I'll leave you with two of her prayers yesterday. They make us laugh (notice her theme of food).

"Jes. Mama. Grandma. Popcorn. Papa. Amen."
Interpretation: Jesus, thank you, i like, or help, mama, papa and grandma. And either thank you for, or I like popcorn.

At bedtime she first went upstairs and shared with lambie something about Jesus. When we prayed together she wanted to pray and this is how it went.
"Jes. Mama. Papa. Grandma. Grandpa. Cupcakes. Mama, Papa, cheach. Sar, Gick, brown. Amen."
Interpretation: Pretty much the same as above aside from the telling Jesus that Mama and Papa are peach, and that Sarah and Vicky are brown. Oh the faith of one so small.

Calmed down and ready for a better appointment next week,


  1. Oh , been there done that. Went to ortho with my little one who ( ped. and pt both said she need braces for her legs) orth made me feel like I was making things up in my head and there was nothing wrong with her legs. Get a second opinion!!!!!!! My little one wears a brace on her right leg and we are hoping that that will keep her from having to have surgery.
    Ps. She is a smart cookie my 22m old is so far behind that ... He will catch up..He didn't move at all till he was almost 8m and now we cant stop him. But that is another story...Email me if you want to hear it.

  2. Have you seen a physical medicine and rehab doctor? We've run through a few ortho's and even a few PMR's one actually made us wait 1 1/2 hours to see him, Annie ended up falling asleep (I almost did too) and when he walked in he didn't even wake her! Talked to me for exactly a minute and a half and then said we didn't need to come back, just call if we needed a script for any equipment. Talk about arrogant. There's good ones out there, just hard to find.

    Your little girl is so smart!! You must be so proud! Great job teaching her mama!! :)

  3. I like how you are confident with the doctors!!! Keep up the good work w/ Abigail.

  4. I LOVE her prayers. That is beautiful. Keep strong with those docs. You guys know her the best.

  5. Have you considered trying a chiropractor? I don't know if you'd find one who knows anything about NF, but you might find someone willing to learn. A chiro might be able to locate issues in the spine and may even be able to do some sort of adjustments in her legs to help her. I don't really know, but I thought it was worth it to throw it out there. (I don't have NF, but I LOVE my chiropractor. He's helped me a lot with my back pain which stems more or less from my mild scoliosis.) Karen.

  6. This verse is the only thing that got me through the poor bedside manner of some of the doctors who treated my son during his cancer days.... with all their bad news and negative assessments, this verse gave me peace and really calmed me down... and enabled me to trust the Lord for a brillian outcome in Ethan's life - "That your faith should not stand in the wisdom of men, but in the power of God" (1 cor. 2:5). Men's wisdom never will compare to His power. Yet satan will use their "wisdom" to discourage our faith and rock our world in a negative way. When I could redirect my faith in God's power and plan, then I could give less "credit" to doctors opinions. Hugs to you!