January 13, 2012Posted by on
Note: This post will be of great interest to anyone who is directly related to me. And, also perhaps to those with whom we live life on a daily basis. To anyone else who may be reading – every so often I post an update on Mikayla’s medical/physical progress. If you don’t know her story you can read it here.
It’s been a while since I’ve posted on Mikayla’s medical situation. Honestly, there’s just not much to report. Which is a good thing…I suppose…she’s doing very well. Medically, there are really no issues right now. It’s been a while since she’s even been to a doctor. (Although, when we went into the bank the other day she asked if we were seeing the doctor. Guess it looked like a waiting room.)
We see the eye doctor again at the end of February. Hopefully, she is old enough now and communicates well enough to actually participate in a vision test. Up till now the doctor has just looked at her eyes and sort of guessed at things – well, he probably wasn’t really guessing but she wasn’t able to communicate what she could or couldn’t see. He has always said she was a bit farsighted, or nearsighted, I can never remember. Either way, it wasn’t enough to cause her to need glasses and he hopes she’ll grow out of it. She seems to see just fine at home except when it’s time to clean up.
We will see the cardiologist in May. I’m very much looking forward to this appointment. A year and a half ago (June 2010) her cardiologist said the narrowing in her arteries was extremely mild if it still existed at all and that the two holes in her heart were closing on their own – a miracle, by the way. A year later (May 2011) at her appointment the doctor’s office had several people out sick or absent for other reasons and they were extremely short-handed. Because of this, the doc wasn’t able to do an echo which means he wasn’t able to actually look at her heart. Based on the EKG and on how her heart sounded when he listened to it, he said it sounded like a completely normal heart. Soooo…we hope that means the two holes have in fact completely closed on their own and that she will not need heart surgery to fix them.
We won’t see any of her other doctors for a while. She’s reached a point where she’s outgrown most issues and just needs to be monitored off and on. One thing that her doctors have all mentioned over the last year – “she definitely has plenty of energy.” Um, yep, no lethargy whatsoever. She goes from the moment she wakes up and runs to my bed and says, “Mommy, time to get up. Light on.” to the moment she unhappily climbs into bed with five or eight of her favorite stuffed animals.
Physically, she’s also doing well. She’s growing like crazy. I’m actually crossing my fingers that she doesn’t outgrow all her “winter clothes” before winter is over. If you see her looking like her mother doesn’t know how to dress her, just know I’m trying to make the clothes last as long as possible. Her muscle tone is low in comparison to other kids her age. Mostly that just means it takes her a little longer to do the same things. She runs and jumps and climbs non-stop. She skips and goes up and down stairs. Seeing her by herself you’d never know she had some weakness in her muscles but if she’s at a playground with a friend you can definitely see the difference. I don’t know that she’ll ever outgrow this – or catch up to her peers. Low muscle tone is something that will improve with age but she will probably always be weaker than her friends. I highly doubt that will slow her down much, though. She’ll figure out a way to do whatever it is she wants to do. Although, I’m sure she will always struggle when it comes time to clean up.
Developmentally, she is a little behind in some areas. Her speech is a bit delayed but she sees the awesomest speech therapist ever! She communicates better every day. She is very much a parrot and we’ve had to start watching what she’s watching on TV because whatever it is, she’ll repeat it. A cashier at Target yesterday said “hi honey” to her and today when she talked to Mike on the phone she said “hi honey”. She’s also quite funny. Sometimes I’m not sure if she just doesn’t realize what she’s saying or if she’s intentionally sarcastic – either way, I predict she will have her father’s sense of humor and quick wit.
People with Williams Syndrome typically follow the same pattern with their medical needs. The first year is excruciating (for the parents, not so much for the baby who cries constantly and doesn’t sleep). After the first year, life gets much easier. There are a few years of a “lull” where the Williams child is pretty much the same as every other toddler. With school will come a whole new set of challenges but for now life is easier.
Easier. Not easy. Life for Mikayla will never by typical – or what most people would consider “normal”. She will always have medical challenges, social challenges. But, she will always enjoy every moment. She will always love people – no seriously, all people. She will always teach me to be engaging and nonjudgmental with people I encounter. She will always smile.
PS – She never wears clothes. I put clothes on her and generally if we are in public she keeps them on but literally as soon as she gets out of the car, she undresses. I don’t know if she’s hot or just uncomfortable or just likes being naked but I hope she outgrows this phase before kindergarten.