Archive for the ‘Doctor and development appointments’ Category

v-a-c-a-tion

Monday, June 2nd, 2008

So we just got back from our vacation. It was tons of fun…not really restful and relaxing, but still very fun.

Maggie has a new “manny”…her uncle/self-proclaimed Godfather Joe Mac is here with her right now playing. He will hopefully be coming by several days every week to watch her and play with her while mommy works. I’m so excited about this!

Things are pretty crazy here right now, but I wanted to put up a little update. Maggie has her renal ultrasound tomorrow, EI on Thursday, and maybe her speech and OT evaluations this week. She’s so close to walking…she’ll walk if you hold both of her hands, and she seems like she’s balancing well, but she freezes when you let go of a hand. I think we’ll get it soon. She’s also eating table food more often now. Over vacation, she ate pasta, chicken, banana, cake and ice cream, potato salad, and some fish. Now she’s not much a fan of her baby food anymore, which means mommy needs to learn to cook.

Will get a more detailed update soon :)

What kind of pretentious jerk do you think I am

Wednesday, May 21st, 2008

Today I got something for me. Its technically for my work, but I look at it as a little present to myself. I got a BlackBerry, and I’m attempting to use it to write this post. I used to think it looked kind of pretentious to see that little “Sent from my BlackBerry” at the bottom of emails, and now I am going to be one of those people. I’m very excited about my new toy, even though it means never being able to hide from my email. At least it should allow me to take Maggie out for some fresh air more often without having to worry about missing anything important from a client.

Maggie is doing very well. She had her appointment with the ENT on Monday. As always, she charmed everyone there. Dr. G was great, and said to Maggie that he almost wished he could find something wrong so he could keep her there longer. Maggie loved him, even when he was sticking stuff in her ear. She sat still through the test on her left ear, and passed with flying colors, but she wouldn’t sit still for the right ear and failed that one. They’re going to see her back in 3 months to check that ear again, but they said both ears looked good, and they doubt there are any problems. They didn’t see any fluid or any indication that she had ever had an ear infection, so all good news there.

She’s got her EI coming tomorrow afternoon, and I’m hoping to hear something on the speech and OT referrals.

We’ve got someone coming to look at the condo on Thursday, so we’re crossing our fingers on that. Hopefully we can get our house clean again by then.

Last, but certainly not least, my thanks to the WS mommies for responding about the poo issue. So far, the prunes seem to be helping, and we’re working on getting the calcium test referral and sources of fiber. Maybe this BlackBerry will help me keep all of Maggie’s dietary needs in order…*ring ring* time for prunes, *ring ring* time for extra caloric supplement!

That cute little booger has really been an angel this week. She woke up a few times last night, which is unusual for her, and it made me remember how rough it was when she never slept, and it made me so thankful for how great she is on her sleeping schedule now. She’s been so patient, hanging out at the doctor’s office and in her baby prison while I work. And she’s just so sweet. Her smiles have absolutely gotten me though so much, and I feel truly blessed every day to have her. I love you baby girl :)

12 month well visit, EI, and family birthday party

Sunday, May 18th, 2008

(post about trip to Kentucky is below this one…I posted them at the same time)

So the day after we got back from Kentucky was Maggie’s first birthday! She had a great day, and even got some french fries and ice cream at dinnertime. She was a very happy little baby. Wait…excuse me…Big Girl :)

On Thursday, we had her 1 year old well visit with the pediatrician. It was the first time we had seen her since the diagnosis. Maggie is now off the charts (off on the bottom, not the top) for her length (below 3%), and barely on the chart for weight and head circumference (5%). Dr. Shealy said we’d start using the WS growth chart, and recommended we give her some Carnation Good Start mixed with some milk for extra calories. I told her I didn’t really want to start milk until we found out about Maggie’s calcium levels (waiting for that referral), but that I would give her a little skim milk. I’m somewhat lactose intolerant, and that’s all I can drink anyway.

I also asked about Maggie’s deer pellet looking poo, and Dr. Shealy said she may be constipated. She said we should give her prunes and prune juice every day. Now, I read somewhere that constipation and kidney problems go hand in hand. We’re still waiting on the referral to get the kidney ultrasound, but I was wondering if any of the WS mommies knew if constipation was a sign of kidney problems. Let me know if you have any insight, and I’ll be pestering the pediatrician about that referral.

Otherwise, Maggie did well at the appointment. On her developmental checklist, the only things I couldn’t check “yes” on were things we already knew she had issues with, so nothing new there. She even did well when she got her MMR and Chicken Pox shots, so great visit!

We got back home just in time for her EI appointment. We discussed the findings in Kentucky, and I told her that Dr. Mervis recommended speech and OT. She seemed very cooperative, even though they had determined that Maggie didn’t really need either one. She is supposed to be getting back to me on the referrals and evaluations.

On Friday, Adela Pearl Smith was born at 2:43 PM! Brad and Amy are now parents of a beautiful baby girl! We got to go meet her, and hang out with Brad and Amy a little while before Maggie and I had to leave for Greenwood.

On Saturday, Maggie had her family party at my parents’ house. Tyler couldn’t come because of work. My mom and Tyler’s mom did all of the planning, and took care of everything, which was so amazing, I would have never been able to plan it with everything going on. The party was wonderful, and Maggie has a wonderful time! I’ll try to post pictures later when I get them off the camera.

Unbriddled Spirit…the tale of our trip to Kentucky

Sunday, May 18th, 2008

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!