Tuesday, July 13, 2010

Nothing gained, nothing lost ...

Hello from Seattle!
I'm not even going to bother apologizing for not posting more often and go with my daughter's wise words learned back in preschool, "you get what you get, so don't throw a fit" ... most often in regard to cookies, cupcakes, or the color of paper they got back then, but words to live by no less!

Indeed, we are in Seattle, escaping from the horrid heat of Dubai. When we left Dubai, it was hovering around 117' F. We arrived in Seattle where it was 58' F and we were freezing! It was literally half the temperature that we left. Jennah doesn't own any long sleeved clothing and has resorted to wearing B's smaller clothes ... very cute.

While it’s wonderful to see old friends and family, our primary goal (or at least my justification to dear hubby) is to make the rounds with all of Jennah’s doctors and intensive therapy. This week is loaded with appointments and we went for our first appointment yesterday to the ophthalmologist at Seattle Children’s Hospital. I got my C.A.P. (Clinic Access Pass) Badge, which allows me to fast track through registration procedures since we’re a frequent visitor. It sucks to have one of these since it’s obvious that any parent who wears one of these has a child with a chronic condition. Nonetheless, there is an unspoken bond and friendly smile when we pass by one another with our huge babies in arms, special prams, or wheelchairs.

Without further delay and ramblings, let’s get to the report …
  • Ophthalmologist – in brief, the VEP (Vision Evoked Potential) measures brain waves in response to visual stimulation. Jennah did a fab job during the hour-long visit, which involved scrubbing sections of her scalp and securely gluing on electrodes for an abbreviated EEG. She barely fussed and seemingly looked toward the monitor when we made noises with bells and rattles to grasp her attention. On the monitor were images of black & white geometric shapes and lines at various resolutions. Unfortunately, the results showed pretty much nothing. Meaning that her brain registered very little. This was expected, but that little tiny glimmer of hope that something could be done for her vision was diminished. She sees like a newborn. Blurry and clueless. But this is OK. We haven’t lost anything. She just never gained vision … never learned to see. As I’ve tried to explain to others before, it’s like an open window with no one looking out. Her occipital lobe has atrophied and there is really nothing to be done. No point in torturing her with patching, operations, contact lenses, or glasses. Well, perhaps just some super-cute sunglasses to protect her eyes since she does respond, as a reflex, to bright light! On the positive side, we can rule out any vision-oriented therapy and appointments and focus on her other skills.
Appointments to come …

  • Every Tues/Thurs – physical (physio) therapy and hippotherapy (horseback riding). Our dear occupational therapist, whom we won’t be seeing anymore as Jennah’s needs do not require her brilliant services, got us into the Little Bit Therapeutic Riding Center (http://littlebit.org/). This place is in very high demand, so we are very fortunate to have been given a place this summer! She’ll be receiving 30 min of clinic PT followed by 30 min on a horse. You can bet that pictures will be soon to follow! We will also look further into aquatic therapy once a week.
  • 7/13 – Dentist for all three kids … yes, even little Miss Jennah!
  • 7/14 – Nutritionist &
               Orthopedics – the one we’ve all been waiting for … what will we do about Jennah’s displaced hips??
  • 7/15 – G-tube replacement – this is going to be a painful one … yikes!
  • 7/20 – Neurodevelopment
  • 7/28 - Neurologist
  • 8/2 -    Pediatrician - 3-year check up
A & B are also doing well and have adjusted to the jet lag … took exactly 7 days!
A is doing ballet and jazz with her old dance company
B will do sports camp (basketball, soccer, baseball) next week

Thank you all for reading and you can expect another post later this week … but no promises ;)


  1. Thanks for sharing your & Jennah's news. I love your upbeat attitude. Sounds like you are super busy being Super Mom. Hope you have some down time for yourself in Seattle. Will be there soon, maybe we can hook up if you are willing to drag your crew to Renton... Take care xxoo Holly

  2. good golly miss molly, what a busy week scheduled! I'm so glad that the jet lag has finished! You will have so much information to digest at the end of this week. It must be so much easier to do all this for Jennah back at your usual hospitals, and as i say easier I don't mean easy. I am full of admiration for the depth of investigation and treatment you seek to find out what best to concentrate on for Jennah. She has so many issues to face yet you take it all in your stride, keep smiling and so does Jennah which is so fantastic to see. You must be so proud of your three wonderful children...you really are a wonderful mother. Will be thinking of you this week!

  3. What a whirlwind! So pleased you're home, hoping you get rested...though, for some reason, I doubt that will happen! Bethy learned that rhyme too, except that it was, "You get what you get and you DON'T get upset". Not us, we're always happy to get an update. Enjoy the Seattle life! :)