Tuesday, October 30, 2012

Teeth to Toes (Day 30 of 31/21)

Cate and I had a very much good news/bad news kind of day the last 24 hours.

First came a foot evaluation with an orthotist.  When Cate was little her PT recommended shoe inserts to help her stability as she was learning to walk.  The hypotonia (low muscle tone) that affects nearly all children with Down Syndrome not only affects the areas we commonly think of like leg strength and core body strength but also areas like digestion and joint stability which are also hugely dependant on muscles.  Cate has completely flat feet probably because of hypotonia.  When she was little this made it hard to learn to walk because her feet and ankles were not as stable as a typical toddler.  As she grew stronger and we graduated from PT, she grew out of the shoes that had the inserts and I never thought about them again.  She was doing great in gross motor skills and had no problem with balance or stability.  But a couple weeks ago I noticed she was walking on her toes all the time.  As I thought about it I realized she had been doing it for a while just not in a way that was alarming.  It became more and more obvious because her new cowboy boots make more noise when she walks than her summer shoes.  I could hear the scuff sound of her toes followed seconds later by the click of her heel.  When I was talking to the ladies at cheerleading and mentioned this they urged me to get it check out right away.  One of their daughters had to have surgery to deal with a shortened tendon as a result of toe walking for too many years.  So I discussed with the walking with Cate's OT on our next visit and she did a foot evaluation.  What we saw was an obvious turn in of the foot at the arch - her foot was pronated.  Fortunately for me there was an othotist visiting the OT's office on Monday so we made an appointment to have an evaluation.  The good news is that she has complete flexibility in her foot and her problems are correctable.  She definitely has pronated feet so he did molds to make her some orthotics.  Bad new - orthotics, good news they are only a sole insert with a heel cup so they will fit in her regular shoes and probably not even be visible.  Bad news - they are like $200 a foot, good news - our insurance company has a history of paying for this type of item for other patients.  Cate and Lucy were both great at the appointment.  Cate completely cooperated and made it a very successful visit.
Bad news - no cute boots to school, Good news - she can wear them for "nights out"
Then this morning we had to go to the dentist.  I was really worried that Cate had a cavity because I could see a darker spot on the front of the first molar on one side.  I also was afraid she needed a tooth pulled because she is getting an adult front tooth to the left but it is so far back that the baby tooth is hardly even loose.  Added to that there is always a fear that she won't cooperate with the dentist - it wasn't that long ago that she had to be sedated to even have a cleaning.  (see my post called "Look Mom No Cavities" from 4-25-12)  Again turned into a good new/bad news kind of visit.  Most importantly Cate did awesome.  She was full of questions for the hygienist and the dentist about the equipment and details down to "what are the gloves for" but totally cooperative.  They got the exam, cleaning, fluoride treatment and even bite wing x-rays done with no tears at all!!!  Amazing.  The good news - no cavities, bad news - that dark mark is a spot she as worn down from grinding.  Nothing you can do about grinding in a kid - as I well know because I have always done it too.  More good news - don't need to pull the baby tooth yet we can wait another 6 weeks or so and see if it comes out on its own, bad news - crowding is getting worse so we 'll need to start looking possibly having to pull other teeth in a year or two. 

So all in all nothing we can't handle, just new pair of shoe inserts to get used to and a tooth to wiggle.  The rest will happen as it will and as it comes we'll deal.

By the way there is a great give away over on "Everything and Nothing from Essex" - I love these necklaces. (hint, hint, hint hubby or mom)


  1. I'm SO proud of her being so awesome at the dentist!! Wow! I have to make an appointment for Sammi this week, to get the process rolling for having her palate expanded. That will NOT go well. Sedation WILL be involved. :-(

    About the shoe inserts, it's the same for us - once she outgrew the shoes her last pair of orthotics was in, we just stopped using them. But recently we've noticed that her right leg is turning outwards at the knee, and we need to get to an orthopedist (or whatever it's called) really soon. :-(

  2. I recently tried to reach you via email, but didn't hear back. Knowing how it is with so many emails coming into everyone's Inbox nowadays, I thought that maybe posting a comment would be a quicker and much better way to connect.

    I am working with a very special lady, Dr. Julia Kinder, who has an 8 year old daughter with Down syndrome. We're trying to promote A PETITION REGARDING DOWN SYNDROME and I thought you would be a great resource to help spread the word.

    PETITION - https://www.change.org/petitions/medical-school-faculty-require-complete-education-on-down-syndrome-for-3rd-year-medical-students

    We're also having all sorts of activities on her website Celebrating Down syndrome - http://www.juliakinder.com/DownSyndromeCelebration/

    We also published a national Press Release about this a few weeks ago, but we need the active Down syndrome community to get involved - http://www.prweb.com/releases/Dr-Julia-Kinder/Down-Syndrome-Celebration/prweb10028318.htm

    Please let me know if you would help by posting some of this to your interested audience: colin@juliakinder.com

    Your time and efforts are so important as we try to change the stereotypes surrounding Down syndrome - dispelling the myths - and as we try to CHANGE THE WAY IN WHICH THE MEDICAL COMMUNITY PROVIDES RESOURCES TO NEW PARENTS. We can only achieve these goals with your help!

    Thank you so much!