Ella's Doctor Appointment

Yesterday, Ella finally saw a developmental pediatrician. It took a month and a half to get this much anticipated appointment. I was excited to get some tests done and hopefully have some more definite answers. The appointment was a disappointment.

A doctor "assessed" Ella. Her assessment included a history from Thayne and I, and a couple of tests, like point to your nose, can you point to the dog, etc. She also did a little physical check up on her. (However, she couldn't even figure out the scale, and thought that Ella weighed 39 lbs, she had added the ounces and pounds, we had to tell her it is 25lbs 14oz. - She is native Asian and I think she was confused).
After the assessment, she concluded that Ella not crawling or walking yet is probably just from her eyes and ear infections. She wanted me to come back in three months and see how she is doing then. Maybe then we can do an MRI or some genetic testing.
This has been the theory all along. I do hope that this theory is right, but I am tired of not knowing things for sure. I am tired of saying- "we think that she isn't moving because she had strabismus, nystagmus and also ear infections. We "think" she may be night blind, but we're not totally sure. We know she can see- but there "may" be some decreased vision.
I said to the doctor, "I feel like Ella is falling through the cracks, how come nobody wants to do anymore testing? It is always just wait and see. As parents, it would be nice to have some answers. The two therapists that work weekly with Ella suggested that she get some testing done, just so we can rule things out. If she does have something else, we can better help her now."
"Well, if you really want to do an MRI or hearing test (I wanted to have her hearing tested because of the ear infections), we can, but you'll have to go back to your pediatrician and ask them to refer you to get the tests."
"What was the point of coming here if I have to go back to my pediatricians and ask for the tests. I could have asked them in the first place. And then when I get the tests done do I give the results to you or to my pediatrician. " (I said this a little nicer).
"We just give suggestions for testing (which I don't think is totally true). Sometimes insurance companys want test referals from your primary care physician, if you want us to refer you, you need to call your insurance company and see if they will cover it."
"It seems pointless to get a referal to see a specialist if they can't run any tests. Ella's eye doctor ran tests, in fact he was going to run an MRI. Don't you guys have a staff member that deals with insurance. I have never had to call them myself after a doctor's appointment." (This is a big center with 5 doctors, physical therapists, psychologists- you would think they wouldn't put all the care back into the patients hands. Not to mention they charged my insurance $500 for this evaluation).
Anyways, the conversation kind of went in a circle and we were about to be sent home, but then she said, "I feel like you're disappointed. (Well, duh.) Let me talk to another doctor and see what he says."
At this point I was on the verge of tears. I was glad Thayne was there, because I had to go to the car before I started crying. When I cry, it looks like the world is going to end- even if it isn't a big deal- my face gets red and my eyes get puffy, it is not a pretty sight. So, I left.
Now, the doctor decides that she will take it into her hands. She will call my pediatrician and eye doctor.

I talked to my physical therapist today, she was saying maybe we should just have a neurologist look at her. It seems that her eyes are not converging well.

Then the doctor called today and said, "after thinking about it, I do think it would be a good idea to run some tests. I said, "The PT thinks her eyes are not converging well and maybe we should just see a neurologist. What do you think?"

"Well, yes, a neurologist could be good, but we can run the MRI and then see if she needs a neurologist."

So- we're going this route- they are taking care of getting me an MRI. I would almost rather go straight to a neurologist now. What if the tests are inconclusive? Does this lady know the brain well enough or how to read an MRI? Or how nystagmus relates to the brain?

Anyways- even though I have had some frustrating times dealing with medical issues over the past year, I am very grateful for medical attention and insurance! Ella is now receiving physical therapy, occupational therapy and play therapy every week. (I had to make this happen). I have seen her make improvements. She is scooting herself on her bum and will army scoot much more than she used to. Her communication skills are still within normal, which makes me happy. We appreciate your prayers. We will be including her in our fast this Sunday, if anyone else would like to that would be great.