wife to Jake, mommy to my 3 crazy munchkins, Lily (7), Jonah (5.5) and Kate (4). Taking this crazy blessed life one day at a time.


A Diagnosis?

This afternoon was good.

Kate's appointment went really well. 

We first met with Laurel, a genetic counselor, for about an hour. She was wonderful. She really took the time to look into the details of Kate's episodes and really everything about Kate, including my pregnancy with her. She really listened to us and took the time to be very thorough. She loved the journal that I keep where I write down every.single.one of Kate's episodes and the details of each episode. She loved it so much she took it and copied it for their records. 

Next, we had a wait for a little while. 

Kate and Daddy reading Curious George while we wait.

Then we were brought into a slightly bigger room where our team was waiting for us. Yes. We met with a TEAM of doctors just to talk about Kate. It was great. The team was made up of doctors that are some of the best metabolic and genetic specialists in the WORLD. We are so so blessed. 

It was slightly overwhelming since there were 7 of us in a small room that was about 95 degrees. 

But, it was good. They were all asking questions about Kate and going over the info they already had on her. They observed her and played with her and she won them over instantly. 

Kate impressed all of them with her wonderfully cheerful and lively personality and they were all asking her for big hugs before we left. 

They looked over all of Kate's history and we talked about medications, her episodes and her lab work. 

They all agree that she has a migraine gene and that she is suffering from a migraine variant, cyclic vomiting syndrome. 

They did, however, order another set of labs for Kate, which we had done right after we met with our team. They saw the results from her labs from when she was in an episode, now they wanted to see what the results would be when she is not in the middle of an episode. They are being extra thorough, which is great. Kate is in the best hands possible.

Sooooo, I guess we do not have a 100% diagnosis, but they seem very confident that Kate does in fact have Cyclic Vomiting Syndrome. 

Overall, the appointment was great. It wasn't that great that it took twice as long as we were told and I didn't know that Kate was going to need more blood work done. She was NOT happy about that at all, but she was happy with the princess stickers she was given afterwards. 

We finally left just after 4pm (our appointment began at 1pm) only to get to the parking garage to find that someone had backed into our van and put a BIG dent and a smaller one in the front bumper! They didn't even leave a note. So, that was a giant bummer, but thankfully the damage is just cosmetic and no one was hurt. 


Thank you to all that kept us in prayer today, and over the past year as we have been trying to figure out what's been going on with our sweet little girl. We love you all. 
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1 comment:

AmiableJAK said...

How amazing to have a team of professionals looking after Kate. I'm so impressed and excited to know you are getting some answers!