Thursday, July 15, 2010

Where's the hippo?

Most of you have probably already seen the amazing pictures on my FB page from Jennah’s first hippotherapy (physical therapy while horseback riding) session at Little Bit Therapeutic Riding Center ( ). Hippotherapy is not an “official” form of therapy as it has not been proven to show results. Some insurance companies don’t even cover it. It’s a ridiculous shame and I think a disservice to so many disabled children out there who could benefit from it. Regardless of what those people say, I am here to declare that it is absolutely awesome! After a 30 min. session of traditional clinical physical therapy, we prepped Jennah for her first ride. There is no riding helmet in the world that would fit her little microcephalic head, but with some padding, we made do and onto the horse she went! It didn’t take long before Jennah began supporting her own head and trunk for extended periods of time. She was all smiles despite the wide spreading of her hips and her ankle-foot orthotics, which she usually resists wearing. She had many points of stimulation to make up for her lack of vision: the rocking and swaying of the horse, the warmth of the animal’s body (she was riding bareback!), the sound of the horseshoes clip-clopping on the pavement, and the smell of the horse, hay, and other not so pleasant, but still stimulating, odors. I met one father there who was watching his sons ride. He told me that doctors had ruled out walking for one of his sons. They put him in hippotherapy and I saw with my own eyes that the boy can walk. Not well by any means, but he was definitely walking. We just hope that Jennah can hold her head and trunk up for extended periods of time … maybe even sit up on her own some day …

As for the other appointments …

• Dentist – B had excess gag-reflex so no x-rays, sealants required for A, and decalcification on Jennah’s molars, so will probably have to go to Seattle Children’s to fix this up in January.

• Nutritionist – she’s a bit too chubby for her height. She’s 40 %ile on weight and only 20%ile on height. So we’re just cutting out a few ounces of Pediasure, supplementing with vitamins, and increasing water to maintain overall fluid intake

Orthopedics – UGH! Not good news. The dysplasia is getting worse and still progressing alarmingly fast. It is now inevitable that she will have reconstructive surgery involving bone and muscle cutting in January. Bummer.

G-tube replacement – what a little trooper!!! After being numbed with heaps of lidocaine, they ripped the old g-tube out. She whimpered for literally 30 seconds and then she was fine! We now have a Mickey g-tube instead of the Bard, which will allow for easier changes that I can perform myself, however, the changes must be done quarterly rather than yearly.

Next up …

• 7/20 – Neurodevelopment
• 7/28 - Neurologist
• 8/2 - Pediatrician - 3-year check up

Until next time … thanks for reading!!!

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 ( 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 ;)