Made of Gray

A trip to the Neuro

Holly D Gray5 Comments
At this point, once every 6 months, we load up and head on over to Caleigh's neurologist. I've said it before and I will say it again....I love that man. He is just the sweetest, most caring, gentle spirit of a doctor.

We arrived and there wasn't a kid in sight in the waiting room. This is an amazing task for a children's hospital, but apparently they knew Caleigh was coming. We waited for a few minutes before we were called back. Usually we wait for over an hour. So I had packed and was prepared for this scenario. It was nice not having to pull out all the entertainment in the waiting room.

So our doc comes in and I started the update process. No TPN, No central line, eating food by mouth, rolling from tummy to back, holding head 90 degrees or more on her tummy, understands simple requests like 'hold your head up' 'bite' 'no' 'bath' 'use your arms'.... I went on and on, beaming with delight recalling all the wonderful things Caleigh has started doing since our last visit. Proud mama stuff.

He sat there smiling and at times seemed surprised with what I was saying. After my long winded speech was over. He went to check Caleigh's eyes. As soon as he shined the light in her face she closed her eyes. Caleigh is very sensitive to light. So as he was trying to get her to open up, he nonchalantly cleared his throat. Caleigh thought it was hilarious and started chuckling and giggling. He sat back and said how cute that was. Then he did it again, this time on purpose. Once again Caleigh laughed. He repeated it again and Caleigh delivered one more time. It was great! Way to show off, little miss!

So he sat back once more, shook his head and proceed to tell me that he remembers the day that he looked at Caleigh's brain MRI. He said that he honestly didn't believe she would be able to do anything that she is doing. He didn't think she would make it. Of course he never led on to his thoughts during those early days and that is one of the many reasons we just love him. He did say that to others, on the street, Caleigh may not look like she is doing well, but we both know that she is doing wonderfully considering all the 'hits' she has taken medically. Then he proceeded to tell me that he completely credits Eric and I for her development. He's seen it before and parenting has so much to do with the progress of children with brain injuries. I need to get a copy of Caleigh's MRI and post it on the blog. It's pretty amazing, but it doesn't really matter because that's not what we see when we look at Caleigh.

We talked about Caleigh's seizures and the Keppra that she is on. We haven't seen any signs of her silent seizures. So the seizure plan is..... right before Caleigh's 2nd birthday, we will go in and do another EEG and then have our Neuro appt. a few hours later. We'll look for any signs of seizures and if there isn't any we will start weaning Caleigh off of the Keppra. Her brain has matured, re-wired and worked the seizures out. We are really excited about this. One more med off the list. I can't wait, it's just amazing.

Caleigh's head grew another centimeter since we last visited. That is a good rate for her age. Even though it has grown, Caleigh's head is still below the growth charts for size. This is considered having microcephaly, or a small head. Just another label. We believe this lack in growth happened during the attempt and success of saving Caleigh's liver this time last year. There's nothing we can do to get this time and growth back. We just need to work on continued health from now on.


Last week we took Caleigh to another eye doctor. He seems to be on the edge of alternative medicine and your mainstream medicine. He has referred us to an ear nose and throat doctor. Something about the ear canals. I honestly couldn't tell you exactly what happened, but I'm pretty sure we are on the verge of meeting our next Miracle Doctor.

At our 18 month check-up, our pediatrician ordered some bloodwork to be done for Caleigh. She wants to check her thyroid. This could be a reason for Caleigh's teeth coming in late. So I called our GI doc and he ordered some bloodwork as well. Mostly our normal TPN labs, just without the TPN. We will probably go and do that in the next few days.

Caleigh's eating is still horrible. I'm still trying though. I called and talked with Our Children's House out of Baylor in Dallas this morning. They have an intensive program, but their waiting list is already out to May. They are the only feeding clinic of their kind in the Southwest and there is only 10 like them in the US. They are popular and they have great results, weaning children from their g-buttons. We are also scheduling another swallow study soon to check on things in that area.

Caleigh has been asleep for about two hours this morning. She didn't sleep well last night. So this nap was much needed. It's let me catch up a bit.

And if you've made it all the way to the end of this post. I'm asking for everyone to say a prayer or several for Gavin and his family. He just had several organs removed and is now working on the recovery.

Have a thoughtful Thursday.

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