Neurology

***FYI, we do not put Lydia in a mask – we just had got some new ones for Sarah and we tried it on Lydie***

A couple days before Thanksgiving, Lydia had her long awaited neurology appointment at Primary Children’s Hospital. Everything was kind of hinging on this appointment and we were anxious to get the ball rolling.

We knew that this appointment was mostly just going to be reviewing Lydia’s history, concerns, and a possible examination. We didn’t really anticipate any ANSWERS at this appointment but we hoped that it would put us on a path to one.

Lydia was an angel throughout the appointment. She was so easy going, as always, and I was so grateful for that.

When our doctor came in, I would be lying if I said I wasn’t a little disappointed. He introduced himself as a resident and apologized because he was a little scatter brained and was struggling to focus so to bear with him.

Basically inside I was screaming…”NOOOO!”

Luckily, our hyper little doctor mellowed out a little and we got to business.

We heavily reviewed my pregnancy, delivery, and Lydia’s history. Then I went through our list of concerns we had.

He told us that each neurologist has a different way of approaching things and I had no idea what HIS approach was going to be. After examining Lydia for a little bit, he then said he had a plan, but wanted to talk it over with the “consulting physician”.

< insert lots of prayers here while we waited >

When he came back, he brought with him the consulting neurologist with him – I was SO grateful. He then examined Lydia a bit himself and I asked him some of my questions.

They did bring up autism several times. I was a little surprised. I finally flat out asked if they thought that was a realistic possibility and the consulting neurologist said he didn’t believe it was the cause. However, he also said we shouldn’t completely disregard it either. And we agree with that. But we also feel like it is different than autism.

Basically, Lydia’s current “diagnosis” {in the loosest sense of the word} is that she has “global developmental delay”. This basically just means that Lydia is developmentally delayed in every category. One surprise that we had was that they said she was in the 6 to 9 month range across the board. We were thinking she was at least a little further progressed, so that was a little discouraging.

This diagnosis is no surprise at all to us though. Now the lingering question is WHY? Why is she so delayed?

BUT we did get put on a path moving forward. So right now the plan is to schedule her for an MRI of her brain to asses brain structure. Basically to see if there is anything THERE that shouldn’t be or if there is anything NOT THERE that should be.

The other step moving forward is for Lydia to get genetic testing done that will screen for common genetic disorders.

We will return for a follow up appointment with neurology in six months, which by that time, we should have a very clear direction.

As with our appointment with the dysphagic clinic, they heavily encouraged meeting with the UDAC {Utah Developmental Assessment Clinic} but we still have yet to talk to an actual human being with the clinic. It’s been super frustrating.

We have an appointment with our behavioral pediatrician {the same that diagnosed Jacob earlier this year} this next week and we are really hopeful that she will help us with resources and move things along.

So that is where we are. It doesn’t feel like a whole lot of progress, but it was a necessary step and hopefully answers are coming forward soon.