Monday, December 14, 2015

Just Breathe

Last Friday we trekked to Shriner's Hospital, a three hour drive away from home. It's very well-run and everyone is so kind and knowledgeable. They all treat the children and parents so well and with such respect. It's my favorite hospital for attending clinics.

I'm a pro at these medical trips. I've got a system. First, make sure the folding wagon is in the car. Second, pack generous lunches. Third, bring a ton of music to listen to in the car. Usually I also bring a couple movies and the portable DVD player, but I didn't do that this time since we planned to visit friends afterward which means the girls will sleep on the way home afterward. A bit of school work in case we have a long delay (didn't get to it this time) and a book and a few toys for everyone. Lastly, a change of clothes for a couple of the girls and sometimes I bring one for me if there is potential for me to get thrown up on or casting material splattered on me, etc...

We arrived on time, but check-in took a long time because three of my children are patients at Shriner's. We were put into a room and that becomes our new home for the day. One by one, the specialists come in. This time, x-rays were ordered. When the films came back and the specialist returned and showed them to me, I ceased breathing, an icy hand gripped my heart, a throbbing pounding sound filled my ears. I'm sure I turned red then white. He didn't have to say a word. Not one word. I could plainly see for myself all there was to see. Not good news. Not at all. Slam! I knew more could go wrong with my girls, but after our previous exam, this wasn't supposed to happen.

Major surgery needed.

Also surgery that's sort of medium.

Also surgery that's a bit more minor.

Another issue put on hold, completely eclipsed by the diagnosis requiring the major surgery.

I've been doing some research tonight. I'm learning more and more about Jie Jie's special need. You'd think I'd have already learned all I need to know, but as she grows, more and more things show up. They are showing up late because of her tiny size. But guess what? Tonight I learned that her tiny size is part of her condition, not just due to the severe malnutrition she suffered in China (NOT due to neglect, but her condition).

Good news for Blossom! Good-bye SMOs, hello in-shoe orthotics. We hope to pick the up in January when we return to Shriner's.

Jie Jie didn't get off lucky at all. She's the unfortunate one. Her scoliosis got severely worse this past year. It's not straight-forward. Her spine is incredibly different from top to bottom. Many aspects of Jie Jie's special need complicate the surgery and recovery even more. People diagnosed with this special need typically have two to three of seven characteristic features. Jei Jie has five. Affected individuals may have additional abnormalities that are not among the characteristic features of this association and Jie Jie has several, some severe and some not. Thing is, things that didn't seem like an abnormality really are and as she grows it becomes more and more apparent. As I sat with my friend later, we started talking about words surgeons use when things are bad. We made a list:

Hmmmmm
Veeerrrrry interesting
Very complex
I'll need to do some research
Let me give this some thought
Let's focus on this issue and put aside the other one
This is unusual
I've never seen this before
Wow!

Then there is the complete loss of words:

Well now, this, uh, hmmm, well, uh, let me see again, yes, very complex.

I am praying for a miracle. She really needs one. As it turns out, we did get a small miracle with a chance encounter with a stranger at IKEA after our appointments. That's for another post, though. I've started doing more research and I have come up with an idea to present to the surgeon. It's still major surgery and I don't know if it's done, especially for this condition, but it might be less risky in the short and long run.

Meanwhile, something was finally absolutely confirmed that I knew all along. Kaiser failed my child in the treatment, actually the lack of treatment, of her feet. The specialist at Shriner's said she would have been treated aggressively and will good success and Kaiser said there was nothing to be done. They did more that has caused my child not to get the treatment she needed, despite me fighting like crazy, but I need to put the past away and work on what's in front of me now.

The last time we were at Shriner's a defect in each of Jie Jie's hands were also identified for the first time. For all the appointments we've had at Kaiser, every single specialist missed this one. There is a surgery to help and it's highly recommended, but it is optional. It bears serious thought and might be a good preliminary surgery to see how Jie Jie reacts to anesthesia and pain medications before going for the huge surgery. I don't know yet. More serious prayer and research are needed so that I can make an informed decision.

Lastly, there is little Apple. Her hands are doing great! The surgeon was particularly pleased not only with her hands, but her intellect and cuteness. She was very complimentary to me for all the OT-type stuff I've done at home on my own with Apple. The result is that Apple doesn't need any occupational therapy at this time and, if I keep doing what I'm doing with her, she probably doesn't need any until she gets into school and we find things she can't do that she would like to do.

Surgery is recommended for Apple's feet. We have time to wait, though. The specialist thinks it's inevitable if she's to wear shoes comfortably in the future, but for now, Apple's feet are so narrow that she's not experiencing any issues at all.

Apple still needs another major huge cranial surgery. I'm confused though. I'm told it's cosmetic, but it's routinely done as part of the standard treatment for Apert syndrome. Perhaps because Apple's so mildly affected I'm hoping to avoid it. It's so hard to know what she'd want as an adult. Would she mind not have a brow ridge or nose bridge if it means not suffering through another horrendous surgery with all its inherent risks? At four years-old she'd certainly opt to avoid surgery. I certainly would opt to avoid it. But down the road, what would she want?

Apple will see another specialist in January about another issue, along with Jie Jie, who will see the same specialist, another new one, and the surgeon who needs to do more research. I feel so much more confident and safe with this surgeon than the one we saw at Kaiser 3 years age, the one who said there was nothing to be done with her feet. Turns out he also probably misdiagnosed them since he never took a plantar flexion x-ray.

Meanwhile, I'm still awaiting the results of Sissy's MRI from last Thursday and tomorrow morning the trend of back-to-back appointments continues as Sissy will see another specialist, then have speech therapy on Tuesday, there's speech therapy for Apple and Jie Jie on Wednesday, then Jie Jie sees another specialist locally on Thursday!

Our lives are completely disrupted. School is barely happening. Meals are at odd times. We are TIRED! The house is a mess, but the laundry is done. Through this all, Blossom has had only one tiny meltdown and it was today. She is being a trouper! She has come so far this year! I'm very proud of her!

6 comments:

Sherri said...

I always read but rarely comment...but today is just...wow. No words but know that I am praying for you today and as you make tough decisions. <3

km said...

Brow ridge? cosmetic? Based on what you've said here, I want to say... I'm Chinese and I barely have any brow ridges. And my nose is flat on my face. It could just be the natural thing!

:-) Just catching up on reading. I've been following since Sissy and Blossom joined you.
Hearts, love, stay strong, keep up the good work.

<3

MishMom said...

Just breathe...a fitting title. Prayers for you and the girls!

Anonymous said...

If Apple is going to need glasses, she'll need that nose bridge.

Catherine said...

So much for you to take in all at once. Praying for wisdom as you seem to do the very best for your girls. You're doing great!!

Anonymous said...

Came across your blog! Lovely story! Amazing dedication.

Regarding Apple. Please do consider, however frustrating and difficult to endure, from both your and her perspective, the cosmetic surgery/procedure that is a normal, regular part of the treatment-plan for Apert syndrome. Do not let the word, "cosmetic" skew your view.

You see, I have a cousin whose newborn girl presented with Apert syndrome. She is now almost 10 and doing well! Her cranial surgeries were very emotionally draining. I know you can find the heart and strength - she will thank-you! With time, and as she ages, you will understand how and why it was the right decision.

I briefly mentored a young girl adopted from abroad, missing her legs below-the-knee [I am a professional athlete and also a bbk (bilateral below-knee) amputee.]. Her birth-parents were otherwise married and had had her as a love-child. However they were not allowed to be together as a family (Divorce being illegal there). So, heart-broken as they were, they huddled together and detonated a bomb, just the three of them. Her parents died, and she survived. She was adopted at 5 years old, and now is a teenager, doing amazingly!! You will see her in the Paralympics, soon! A testament to adoptive parents such as yourself!!

Best wishes!