Unbriddled Spirit…the tale of our trip to Kentucky

I’m finally making myself sit down and post about our trip to Louisville, because I cannot let the week end without getting it done. My intention si just to share how well Maggie did with the appointment, and I hope that no one takes offense or sees it as bragging. We know how truly blessed we are to have Maggie doing so well, and we are thankful every day for that. If you want the overview (shorter version), skip to the last couple of paragraphs. Sorry I’m so long winded :)

Cute Maggie, day before the trip

We left super early last Sunday (May 11)…super early for us anyway. I was up at 4 trying to finish packing, check the weather (tornado warnings…yay), and get the house looking pretty in case anyone came to look at it while we were gone. My mom was a huge help, coming down at the last minute the day before to help me out while Tyler worked. I don’t know if we would have gotten everything done and ready to go without her. Thanks mom!

We got on the road to go get Tyler’s parents’ car about 6, since the Mustang is not really the best car for two adults and a huge baby seat for long trips. Thanks Kanda and Raymond for the Impala! We left their house around 8:30, and hit the road! Maggie slept a lot, and did really well on the drive. It ended up being a pretty nice drive, with lots of room to spread out, a pretty chill Maggie, and me and Tyler fighting for the driver seat. We stopped several times to let Maggie play on her blanket and stretch her legs. Tyler was super excited to see Kentucky, and to visit a state that did not secede from the Union (only the second state he’s been to that wasn’t part of the Confederacy). I was really surprised with how well Maggie did being strapped into the seat for about 11 hours. She’s such a road trip master…we were so proud of her!

Tyler spent the day looking for blue grass. This is as blue as we found.

We got to the hotel at about 5PM, which I thought was pretty good time considering. Hotel room was alright, but the jacuzzi tub was totally worth the price of the room. It could have been a closet containing only that tub and a cot, and I would have been happy. So Tyler left with the car to go find a grocery store to pick up body wash for me (forgot mine) and some dish detergent for washing bottles. He was gone forever! Turned out that he got kind of lost and went to a grocery store like 5 miles away. But, when he got back, he had beautiful purple flowers for me! Happy Mother’s Day to me! Maggie and I took a bath in the jacuzzi tub, and Maggie loved the bubbles and the jets! Tons of fun. We all went to bed really early Sunday night, even Maggie who had slept most of the day in the car. It was a good night :)

We get up Monday morning. I got up early, got everything ready, got Tyler and Maggie up, and still had time to spare. I wanted to leave like an hour early, even though the hotel was literally 4 blocks from the University. Tyler said no. So, I decide to trim Maggie’s nails, so she doesn’t claw a researcher to death. Bad idea. She wouldn’t hold still, and I totally cut off a chunk of skin on her thumb. She didn’t seem hurt, and didn’t seem bothered by it so much, but it was bleeding pretty bad. I tried to keep her from putting it in her mouth, and keep her from getting it all over both of us. Thank goodness for the Tide To Go pen, or we all would have looked like we had just hacked up a small family. Tyler and I tried to get it to stop bleeding, to no avail, and finally left the hotel 10 minutes before we were supposed to be there, with a bloody child and a super freaked out mommy.

So we get there. Maggie is fascinated with all of the people, I’m fascinated with the bulletin board of children’s pictures (kids with Williams Syndrome, I assume), and Tyler is fascinated with the toys. After a few minutes, we meet Dr. Mervis. She seemed really nice, and went over all the paperwork, forms, and details with us. Then, we start Maggie’s evaluation. Maggie did great in most things. She picked up a cloth that was hiding a toy, in order to get to the toy she knew was under there. She banged two objects together. She put a lot of things in her mouth, including a spoon (which was the only thing she was supposed to put in her mouth). Her problems were picking things up with her pincer grasp (thumb and index finger, which we’re working on in EI), and using objects appropriately (like rolling a ball, or pushing a car and saying “vroom”). I attribute that last one to me and Tyler…I don’t think we’re ever rolled a ball to her, or pushed a car and said “vroom.” I don’t even think we have a toy car. We will be remedying this situation soon. Maggie also didn’t stack blocks, but again, no blocks in our house. Just a bunch of toys that tell her colors in multiple languages. She now has blocks (birthday presents from mommy & daddy and Pappa & KK), and the multi-lingual color toys are put away.

After that, we went over to the “Infant Cognition Lab” for some fun research-y stuff. Not sure if I’m supposed to write what the actual test was, but it was basically testing Maggie’s ability to recognize individual words in a spoken language, rather than just hearing the “adult speak” (waah wah waah) from Charlie Brown. At least that was my understanding of it. So, Maggie sits on my lap in a room with just us and a TV screen. I honestly wasn’t paying much attention to the language…just noticing the gradients on the graphics. I need to get away from Photoshop more often. Anyway, so we get done, and go back into the other room, and they tell us that Maggie recognized the words, which was really amazing. We were so excited that Maggie did so great! She now has a little t-shirt as a souvenier of the experience :)

Then, Maggie got to look at some faces upside down, but she was getting kind of sleepy and fussy. So, after that, we took Maggie for a ride around the neighborhood so she could nap and so Tyler and I could get some KFC in Kentucky. Just fyi, it didn’t taste any different. We drove around for a while, and got the hang of navigating around the hotel and University as we were just driving in big circles. We got back about an hour later, with full bellies and a rested Maggie.

When we got back, I talked to a psychology grad student about being a stressed out mom of a child with Williams Syndrome. We determined that I’m doing well with Maggie’s diagnosis so far, but that I just have too much going on and worry too much. At least that’s what I think, and what I think she agreed with. Maybe I’m pushy and presumptive. While I did that, Maggie was filmed playing with a grad student. Tyler watched, and talked to the mom and dad of another little girl who was there seeing Dr. Mervis. We went back to the Infant Cognition lab and Maggie got to look at faces right side up. Nothing exciting to report there that I know of. We went back to the office, and Maggie was filmed playing with me. Maggie actually had to take a poo about halfway through, and spent the last half of the time standing against the table and grunting. Go Maggie! We actually realized later, after talking to her pediatrician, that Maggie has some constipation issues, so she was constipated on camera. That will make her so happy one day, to have that documented on video. More about that on the next post.

Dr. Mervis had a meeting so we just hung out with the grad students for a while, and we put Maggie in her Pack’N'Play to take a nap. When Dr. Mervis got back, we met with her in her office. We filled out some questionnaires (with Dr. Mervis’s patience and help, because my brain was fried at that point). Then she she gave us the scoop on Maggie.

Start reading here if you wanted to skip to the short(er) version

Dr. Mervis said that Maggie is doing fantastic for a child with Williams Syndrome. Her gross motor skills (crawling, walking, sitting up, etc) are in the normal range of where they should be for a child her age without Williams Syndrome, which means that she is doing exceptionally well for a child with it. Her main area that needs attention is in fine motor skills, and Dr. Mervis recommended that she get occupational therapy to work with her on that. Using objects appropriately and using her pincer grasp were the big things. She also said that children with Williams Syndrome often do not learn to gesture like a typical child. So, we need to work with her extra hard on learning to point, wave, and make gestures. Her speech is going well, but she said she could use extra attention on that as well, and recommended speech therapy. She said that Maggie is babbling well, making lots of consonant sounds, and that her use of variegated syllables is very good (that means she can say things like “goey” or “shenaaa” instead of just “mama” or “dada”). In both fine motor and verbal skills, Maggie is doing great for a child with Williams Syndrome, and Dr. Mervis seemed to think that she had the potential to do even better with some extra help.

Dr. Mervis also gave us some great info about WS myths. She said that not all children with WS are musical, and she thinks it has more to do with the child and the family than WS, and doesn’t want parents to get their hopes up that their child will be a musical genius. Since our families are pretty musical and artistic anyway, Maggie has a chance of being musical and artistic, but her chances aren’t elevated because of the WS. She also said that its not true that all children with WS are really happy all the time. She said they can almost always be described as “delightful,” because they are often very friendly and fun, but that they also have lots of problems with anxiety and get pretty worked up. She said that Maggie is truly a happy baby, and that its due to her personality, not the WS. She also doesn’t seem to have much anxiety, which is also good news. We were thrilled at hearing this, because we have always thought she was a very happy child, but we were starting to wonder if it was just because of her syndrome. Pretty much everyone there said that Maggie was so sweet and so happy, and we heard that she had the office abuzz when she first got there, because she was so happy and easy going.

In general, Maggie is near the top of the development scale for children with Williams Syndrome, and is doing just about as well as she could be. She is atypical for a child with WS, and has a very good chance of being in the lower average intelligence range, as long as she keeps developing at a good rate. She won’t regress or hit a plateau like what happens with some other syndromes, but worse case scenario is that her development doesn’t continue at its current pace. I feel like if she’s done this well with Tyler and I not really knowing what we were doing, and her doing most of it on her own, that there’s no reason to not shoot for having her get to “average” average intelligence.

We were so glad to hear all of the good news, and literally left the University on cloud nine. We pretty much stayed on cloud nine all night and all the way home the next day. We were so excited about the visit that Tyler and I completely forgot that Tuesday was our anniversary until Kanda called that afternoon and told us “Happy Anniversary.” Maggie did great on the way home, and even got to play in the grass some at the welcome center in North Carolina. She loved it. All in all, it was a fantastic trip. We really felt like a huge weight had been lifted, and were so glad that we got confirmation of what we were optimistically hoping for.

We decided that the next time we go, we’re going to take a few extra days to do some sight-seeing and make it kind of a vacation. It was so much in such a short time, and we really wanted to go to the Louisville Slugger Museum and a distillery or two, so that’s the plan for next time. And I’ll definitely bring some bubble bath.

So, yay Maggie!

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3 Responses to “Unbriddled Spirit…the tale of our trip to Kentucky”

  1. Julie Says:

    That is awesome news. Noah struggled with the pincer grab stuff for awhile eventually it happened. Noah drinks pediasure with fiber. It has extra calories. If I dont’ give him the vanilla with fiber he gets constipated and his kidneys are fine.

  2. Laura Says:

    That’s great news!
    My daughter, Michaela now age 9, has WS and we also see Dr. Mervis.
    It’s nice to hear her say your child is doing well. Michaela tests as normal IQ and is doing very well. Keep up the good work!!!

  3. Heather Says:

    Good job Maggie! We saw Dr. Mervis last July for the first time. You are right, the chicken at the KFC in Ky tastes exactly like the KFC in PA too. I don’t know what I really expected?
    Caleb didn’t do as well on his testing, he is average WS IQ. One test said 58, the other said 68 which is low average (on the non-ws scale). We just continue to work as hard as we can with him to help him reach his full potential, whatever that turns out to be :)

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