Tuesday, July 26, 2011

Sie Center For Down Syndrome Visit #1

The day has finally come. I've been looking forward to it for 6 weeks now.  Truth be told, anxiety has been mixed with the excitement.  I was all eyes and ears taking it all in.

My brain is on overload with the information I was given today.  That's not a wild fire you smell, it's my brain matter.  Really.

The kids outside the Children's Hospital

Getting ready to go in the center

First, Faith was weighed and measured.  She weighed in at a whopping 22lbs and just over 32".  Peanut!

Then we met with Patricia Winders.  She is the author of several books relating to Down syndrome, regarding gross and fine motor skills.  She was VERY impressed with Faith's motor skills...saying she was "ahead of the curve for a child with Ds".   I was so proud of my girl...she's a rock star.   Pat had Faith running, kicking a ball, bouncing on a trampoline, and climbing up and down toddler sized stairs.  Pat recommended that we have Faith fitted for "Sure Steps" orthotics to help strengthen her heels and provide her with more of an arch in her feet rather than walking so flat footed.   So, she was measured for the orthotics today.  They will be have adorable little bumble bees all over them with matching yellow straps.

Kicking a ball while"running" with Pat.

Showing off her stepping down skills, with a little help.

We had a little "lay over" in the waiting room waiting for the doctor.  In that 10 minutes, Faith managed to take a head dive off a chair and landed right on her mouth.  Blood everywhere.  The nurses came running.   Turns out she split open her upper lip frenulum, leaving a gaping hole above her top teeth.  Luckily, it is such a vascular area, it will heal quickly with no intervention needed.  A popsicle, a teddy bear and a cozy quilt made it all better, thankfully.

Next we met with Dr. Francis Hickey, a developmental pediatrician that specializes in kiddos with Down syndrome and their unique health issues and challenges.  He went over her medical records that were compiled for him over the last 6 weeks from all of her specialists here in the Springs.  He was very impressed with her pediatricians and their attention to detail with Faith's medical conditions. After talking to us and his own examination, it was determined that Faith needs to see an ENT as her tonsils are "huge" ( greater than a +3...+ 4 is the largest they can get).  She needs to be scoped down her throat and have a tonsil and adenoidectomy in the near future.  I was also told by the doctor that after having gone over her medical records and chest x-ray reports that she has "never had a *normal* chest x-ray".  The concern is that she has some lung disease due to micro aspirations of fluids that she drinks and also from her reflux.   Soooo, we will be seeing a Pulmonologist and a Gastroenterologist  in addition to the ENT.  She also has some cardiac concerns with having a coarctation of her aorta and aortic stenosis.  Dr. Hickey also believes that Faith may pack on a few pounds and have less feeding issues once her ginormous tonsils are removed.

We also met with a social worker to make sure things were all on track...they were.  I was so impressed with the level of care Faith received there.

Labs were drawn for celiac disease, thyroid function and blood counts. It was recommended Faith go on a mostly dairy/lactose and gluten free diet.   She will also continue to be followed by a hematologist/oncologist for her ongoing neutropenia.

It was a whirlwind of a day, but very educational and somewhat encouraging.  

More to come...


  1. Great info! I've been following your blog for some time - your children are adorable!! Just out of curiosity, why gluten free and dairy free? Does she have issues or is this just precautionary for all of our children? If you wouldn't mind emailing me at emilyvillaflor@gmail.com I would love to hear from you!

  2. Hi
    My and I came across your site. Your daughter is an amazing Jenna and I came across your site. She is a beautiful little girl. Such an inspirational hero. I was born with a rare life threatening disease, and developmental delays. I love it when people sign my guestbook. www.miraclechamp.webs.com