Thursday, May 26, 2016

Miracle Cancelled, A New Diagnosis

It was too good to be true. Yes, Apple's skull surgery has been postponed, but a hip x-ray taken last week has revealed that Apple has bi-lateral hip dysplasia. It should have been caught by the doctors in China at her birth, by the medical exam in Guangzhou, by our Kaiser pediatrician and by the orthopedic specialist at Shriner's, but no, not one of them found it despite their years of medical school and experience. I did, but I thought it was something else, and even now, that something else could be part of the problem, but at least my concerns made the neurologist at last week's clinic visit order a hip x-ray.

I'm not taking the news well. I'd rather have the skull surgery because once it's done, it's over and the recovery is a few weeks and it's fixed. With hips, we're likely looking at spica casts and surgeries followed by more surgeries throughout her lifetime and pain and arthritis.

To make matters worse, Kaiser doesn't have a specialist in our area. We have to travel three hours - yet again - each way.

On top of this, Jie Jie has been having hygiene issues that are driving me nuts! She just doesn't see any value in keeping herself clean. Bathing, brushing teeth, washing hands and face. She'd never do it unless I stand over her. She even pretends to do it, lies about having done it, and says she doesn't know why she doesn't do it. It's maddening!

And on top of that, Sissy's issues are escalating. Today was seriously hard! Specialists are finally mentioning the possibility of autism. I suspected something like that from the beginning, but last November I actually began researching it more thoroughly and believe it would be an accurate diagnosis. Hopefully, I'll find out soon and be able to get the right services lined up.

Blossom is doing well, thankfully. She seems to be coming out of the most hormonal time of puberty and calming down and actually maturing more emotionally.

4 comments:

Anonymous said...

So sorry medical and behavioral issues just keep on cropping up! Prayers for your sanity. Not surprised at all about the possibility of autism diagnosis for Sissy. One of my daughters is on the higher functioning end of the spectrum. Now in her 20's, and some of her issues are similar to Sissy's. I don't want to discourage you at all, but from some of the descriptions of JieJie's behaviors/lack of social appropriateness has made me wonder if she's not also somewhere on the spectrum. Better to know and start aggressive helpful therapies as well as gain understanding than to find out much later. I'm no expert, that's for sure. It just makes me wonder... Hugs and prayers to you. Keep up the fantastic work. You are a wonderful parent!

Joannah said...

That's a lot to be dealing with! You are such a good mom. So intuitive and smart about your girls and their needs. Stay strong. You are doing a good job with your daughters.

Lynnea Hameloth said...

Oh goodness....I'm so sorry. I've walked that hip surgery path. For a child who is already mobile it will be "easier" as she can already walk unassisted. But not gonna lie....it is going to be hard...and she will need PT afterwards but you got this! Glad you spoke up and they took your concerns seriously. But yeah, so sorry! :(

gail said...

I am sorry your day has been so hard. I can't believe Apple's hips were overlooked for so long. It explains a lot for sure. Isn't it ironic that Blossom has done just that under your love and care and Sissy has escalated. I hope the Autism clinic can provide the answers you need to parent her. As a former foster parent, this is hard work. It has its rewards for sure, but hard nonetheless.

I was also glad to see your postings again after your fall. I was concerned. So happy it wasn't more serious and you have your dear fireman.

gail