Elsie's story- part 3

So we finally got an appointment with a neurologist.

We went when Elsie was 14 months old.

Here is a small blurb that I wrote on myfamily (website for my family side):

So we went to the neurologist today...things went well, he did   a good job, he spent a lot of time with us, and he said he doesn't think she has increased tone, or anything to be concerned about.   He does think she is behind in her milestones, but he said in 6 months, when our next appt. is, he thinks she will be all caught up.  

I don't know what is wrong with me.  

I should be happy nothing is wrong, but deep down I think there has to be something more than just her being behind.   I figure we are doing everything we can for her right now, and she is making progress, so I guess we will see where she is in 6 months from now.

I just left the appointment mad.

I just didn't feel like he listened to me.

And of course, I didn't want anything to be 'wrong' with my child....

But I just knew, in my gut, she was more than just behind.

I think Dr. Allie was a little frustrated too.

We decided not to go back to him.

In March 2008, when Elsie was 20 months old, we took her to a Developmental Pediatrician.

Here is what I wrote about that visit (I am glad I wrote all this on myfamily, or I wouldn't have it at all!):

So we took Elsie to the developmental pediatric today...he is a strange duck, but he worked with Elsie, and spent a lot of time with us.  

He said Elsie is "just a little puzzle".  

He said there are things that makes him think maybe it is genetic, the crease across her hand, her high arch inside her mouth, her small head.  

 But he hadn't gotten the results from our other Dr and the blood tests. 

He wants to know what the chromosomes said.

Brent and I both remember Dr. Allie saying they came back normal...but he said she might not have even gotten them back yet.

Anyway, so he will get those. 

If all is good with that we will order some different tests, and most likely do an MRI.

He says it will probably come down to her being diagnosed with mild CP.

 The Dr said he would want to do an MRI just to make sure there isn't anything inside we are missing.   Cerebral palsy, loosely termed is brain damage. 

And for there not to be any reasons for for Elsie to have brain damage...usually it comes from a traumatic delivery, deprived of oxygen,and other stuff that hasn't happened to Elsie... my pregnancy was no problem, birth was no problem, and so they just want to check to see if they are missing some other kind of cause.   Does that make sense? 

Anyway, but he did say for now we are doing what needs to be done to help her get the furthest along.

He did say he was amazed with how a baby could be so happy for so long and smile the whole time. 

A few things he said that kinda sums up her "puzzle" of a body.

  Her body is both high tone and low tone.

Her hips, ankles, elbows, and knees are all high tone, and hard for her to bend, and the rest is low tone, so when they try to work together one muscle is pulling harder than the other can so they just can't do the function it is trying to do.

She is at between a 9-10 month age in her speech and about a 12-14 month age in her motor skills....but he said cognitively she is ahead, he was amazed with how many body parts she could point to.

That she understood things you said to her...I told him it is like her mind knows what to do, but she just can't get her body to do it.

Man I think I would be so frustrated if I were her, but she is not.

She is such a blessing in our lives.

You can't look at her and not smile.

She is definitely our little angel.

Anyway...just thought I would slip in there...mothers intuition is always right...how long ago did I say that CP was what she had???

Anyway, we love our little angel!

I remember the fear I had of the Cerebral Palsy word.

Worried if she would be able to have a good life.

It wasn't a shock when she was diagnosed....because I had done research, and already knew in my heart that was what it was.

I knew we were giving her all the things we could.

She was happy.

Of course she would have a good life.

And she would make others lives better all along the way.

There is definitely more to the story.

So part 4 is on it's way.