Saturday, April 14, 2012

5 Hours in Clinic

We attended spina bifida clinic for the first time today. It was the first time and we were there for 5 hours straight. We saw 10 specialists, but one or two more marked themselves as having seen us. Beside the list of IN/OUT specialists on the door, I put my own sign. This is what it said:

"Please Read Before Entering:

My daughter was adopted in China one year ago. She is now 8 years old and is very bright and reasonable. She understands and speaks English quite well, with an accent, but may not understand jokes, odd humor or pop culture. For example, she doesn't know the names of any princesses or TV characters.

Please be sensitive in the questions you ask and the responses you give, both verbal and non-verbal.

I know very little about her developmental and specific medical history. She did not attend school of any kind in China and is currently homeschooled.

In China, she had the best care possible for her circumstances and geographical region. Please don't judge, don't exclaim, don't use strong language, gestures or body language, don't be incredulous. She was well-loved in China by her birth parents and the orphanage caregivers. They kept her alive against all odds, she has suffered greatly, and she is where she is today because of them.

Please speak clearly and truthfully to her. For example, a blood pressure cuff doesn't give "an arm hug", it gets a little tight, but doesn't hurt.

She understands best when only one person speaks to her at a time.

If she needs to undress for examination, I will undress her while you step respectfully back. She is not at all shy, but is developing a healthy body image and sense of privacy/modesty as well as a realization that her body did not form in the usual healthy way. Thank you!"

Everyone was very nice and I especially liked the orthopedist. He went over her films and MRIs very carefully. I'm looking forward to reading their notes later in my duaghter's chart.

She's showing some spunkiness due to nerves.
It was hard to get this picture of her.

Making the cast moulds for the SMO DAFOs.

These are what feet orthotics will look like, but plain white.
She puts on a sock, puts on the SMO, then puts on shoes.

Our picnic!

So, here's the scoop. We got the call today from Shriner's late this afternoon. We've been turned down. They called and spoke to Kaiser at some length, apparently. This made something that happened at clinic today make sense. When the ortho team came in, they had an orthotist with them. Without much talking to me at all, they started fitting Jie Jie for orthotics. I had 4-5 people in our tiny room for this. I wondered at the time why this team had swarmed us and why they moved in so fast with little discussion. They were armed! The good news is that at the end of May, Jie Jie will have orthotics to wear that will help her walk on the bottoms of her feet. I don't know anything about the treatment with them, but I'll get a copy of her records and see exactly what they wrote.

Everything else was just talking. Since we just spent the past 6 weeks going through all the specialists, there wasn't much to be done. Once all the reports are in, they will be sent to a county physical therapy unit and we'll, hopefully, be accepted for care.

Next week, a renal ultrasound. This is a big deal because the kidneys need to show significant improvement or Jie Jie is headed for some serious kidney issues. Week after next, dentist. Sometime soon, more diagnostics, at least 2, but I need the doctor to add another to the list that I didn't know about. Hopefully, we'll hear from the surgeon in L.A. and be able to travel down to see him soon.

Jie Jie's reward for going through this was a movie. We saw Mirror, Mirror and it was surprisingly good. I liked the music, too. It's meant to be funny and not follow the traditional story and I knew that, but I didn't realize how clean it was going to be - no swearing at all. I don't even think they took the Lord's name in vein a single time either, but don't quote me on that because I am pretty tired. Jie Jie liked it a lot and when it comes out on video I plan to get it because it was such a perfect big girl fairy tale story.


John G. said...

Congrat's! I praise you for doing what some of us wish we had thought of first. We sometimes get questions in front of our daughter that aren't appropriate or comments about China I would rather she not hear. You are a great mom and even better for being a strong women who isn't afraid of the "Dr.'s". They sometimes can be intimidating.

We wish you all the best in finding the care that Jie Jie needs and that she is healed.

Blessings from CT.

Princess D said...

Agreed! Great job mama with the note to dr's on the door. (and, "arm hug", man those things must love me to death then ;) cause my arm always feel like it's going to pop off before the cuff starts to release).
So glad she'll get the ortho help. Hopefully you get as good news for her kidneys.
Mirror, Mirror does look very cute and funny--I may take my Goddaughter then, if she hasn't already gone with friends :)