My leukemia's back.

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Blooie said:
I'll just send a link to where I posted what I know so far, if that's okay. Don't want to type it all again, and that way I won't be hijacking the whole thread here with my whining.

https://www.backyardchickens.com/t/935165/raising-chickens-and-special-needs-kids/60#post_16737097
Click to expand...

Blooie, I read your linked post. Now I'm sitting here trying to think of something to say that would make you feel better. Forget that. Feel whatever it is you need to feel...get mad, cry, be crabby or distracted.

Every one of us has multiple labels attached to us. Oldest kid or baby of the family, arrogant, shy, too fat or too skinny, ignorant or too smart for their own good, ethnic labels, the list goes on and on. Those labels only serve a purpose to the people sticking them on. They do not sum up in one tidy phrase who a person is. Life isn't that neat, people aren't that simple...pigeon holes are only good for pigeons.

You and your family know who Kendra is better than anyone. No one can tell what a child is capable of by tic marks on a form. Keep doing what you're doing with her. Keep giving her encouragement, opportunities and love, just like you are now, she'll far exceed what those test results show.
 
Blooie, Thank you for being honest and for fighting for Kendra. I wish you were my dd's grandma! :)
Let the labels go. It should provide more services for her and if she isn't on a rare and expensive state funded healthcare, it might be good to look into. I would hope those labels would help out in that way. Otherwise, go hug Kendra and give her the good news that chicks are coming soon and go count down the days.
 
:) thanks, sour! Labels can be good but inside a family, you have to sometimes let it go and see them as yours. But sometimes it helps to understand them better as in there is a definite difetence between Asperger's and Down's Syndrome and sensory issues and language learning disabilities. But sometimes I really don't want to hear more labels-just like Blooie!
 
After a night and half a day alternating between crying and being so mad I wanted to hit someone until they felt as bad as I do, guess where I ended up? Right where I was yesterday morning - looking forward to her being home - getting into the cabinets, calling me a "bowl" (don't ask) and giggling at things I see every day and barely notice anymore. Yep...exactly nowhere different. And that's a mighty doggone good feeling, let me tell you!!

We did get some good news in today's summarizing appointment. First, they were stunned at the difference in the spinal x-rays from 8 months ago to now. Because she's walking more, bearing weight, and staying more upright for most of the time, her scoliosis is correcting itself. In fact, they said that the curve was now so negligible they can't really even call it scoliosis anymore, although they will continue to monitor it closely.

They also were happy with the fact that her hips are beginning to stabilize and that the twisting in her shin bones is beginning to straighten. Her shins have been so torqued since she was born that this was really good news! They are far from normal, but they are better than they've ever been, and we'll take that! Again, it's all the weight bearing she does now that is making the difference.

Her kidneys, bladder, ureters, bowels and colon are still sound and healthy, so they have given the go-ahead for her MACE procedure. They are looking to schedule it for either late June or mid-July, and will be finalizing the dates and times as soon as we can coordinate our timing with theirs. Since Jenny and I will have to stay in Denver for about 3 weeks after the surgery, we have a lot to juggle

I have a couple of other places to post this, too, so forgive me for copy and pasting to other threads. Not something I normally do, but this little doll has so many people pulling for her that I don't want to leave anyone out who may be wondering. And thanks for everything. I'm sorry I got so down - I'm usually the most upbeat person but this just knocked the wind right out of me - out of all of us, for that matter.
 

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