Tuesday, December 13, 2011

Two years and counting...

Being two isn't always easy. Some days you will get spoiled by grandparents and even get to eat McDonald's. Sometimes you might get shots, and blood drawn, and your head measured. The latter isn't nearly as good as those juicy Chicken McNuggets. The tests and measurements are for Mommy and the doctors.

Today PP's measurements ranged from 62nd to off the charts percentile. The doctors use a slightly different chart for PP, and they don't put the actual percentile into forethought as much as they look at the  steady increase of her measurements over time. A new test PP had done today was a body mass index (BMI). She has 16% BMI, in the 62nd percentile, which is just fine. Her head measured in the 96th percentile. Height was 37.1" which was off the charts so they called it 99th percentile. She weighs 32lbs 11oz, which is a decrease from last time but still in the 98th percentile. In other words, Dr. Sarah thinks PP is growing just great. I agree with her. 

The doctor and I talked about the diagnosis of Weaver's Syndrome and what it means for PP. Dr. Sarah had never met PP before so she did a little homework before our visit. Finding information on Weaver's is easier if you're a doctor, but she wasn't able to find much. This basic information never seems to increase or change, ever. However, she proved that having a fresh set of eyes look at PP's chart is very helpful. Dr. Sarah suggested we see Developmental Pediatrics in hopes to get further testing on PP's behavior and other areas. This is an effort to see which of PP's symptoms line up with Weaver's and which ones could fit somewhere else. I asked Dr. Sarah about Autism as well. Honestly, I wasn't very concerned about it, but when I was given an Autism Q&A at the office I checked off more boxes than I thought I would. Some symptoms that PP has line up with Autism as well as Weaver's. That's where this new developmental testing will come in handy! We can sift through all the little things to get a better view of the big picture. Weaver's Syndrome, PP style. 

So this new adventure has an order written for one year. I can't imagine where PP will be then. When I think about where she was one year ago I feel a lot of emotions. I'm happy, sad, proud, excited, anxious,  lotsa things. Last year on her birthday I had to help her sit up to open presents and she was still on thickened fluids. She hadn't gotten her diagnosis yet. Now she is so close to walking and her sign language is getting much better; this is fantastic progress. Our little family has embraced the diagnosis and now we just go with it. We already have orders written for various tests next year, like the VCUG, which I am nervous about. I would love to be done with this 'medicine every day' thing and not worry about my daughter getting a UTI, but I won't hold my breath. I am still so proud of my girl because she works hard and gets what she wants, just like her momma. She's motivated and energetic, which makes me anxious for her future. I want to see her succeed so badly! I can't rush her though, because I know that she has to do things her way and in her own time. PP needs me to do what I do best: support, love and help her become her own person. Also, to make chocolate chip cookies. 

When we arrived home from our doctors visit I found a letter in the mail from our beloved Dr. Melchert. He will no longer be practicing medicine in the Children's Clinic, he's moving to the Emergency Room. It's time to start looking for a new doctor! Thankfully, I have a tip for a great doctor over at Gillette Children's hospital in St. Paul. This hospital is geared towards children with disabilities so I am definitely excited for this new change!

Bottom line, there will be lots of cookies and love in my house this next year along with fun, new adventures. I can't wait!

Ho ho ho's and jingle bells 
XOX

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