Friday, October 29, 2010

An Unexpected Special Need ~

When we excepted Rachel's referral we knew without a doubt, she was ours. We knew no matter what a doctor told us she would be coming home to our family. I did take her medical in to our doctor to look over, but it was during an appointment for one of our other kids and I just had her glance at it, offhand.

It wouldn't have made a difference what she said. Rachel was our daughter.

Then our paper chase took forever and the LOA and so on. So she waited and we waited. We were blessed to be able to get updates on our sweet girl through traveling parents.

We knew through pictures and first hand stories that there was more going on than just a limb difference. And we were prepared....I had specialists lined up and everything. But being in DC area the wait to see them is horrendous.

I mean seriously, we came home in July and I have yet to see the geneticist. That won't be until March 2011!!

We have seen two orthopedics doctors and have gotten two very distinct opinions. So, we are waiting to see a third, in you guessed it February 2011...sigh

So I took it upon myself to beg and plead with the ped doc to order the blood work. Which after having begged and pleaded for the giardia meds and getting them she agreed.

I am either a good talker or she took pity on this very tired mama of six whose husband is always traveling.

The test results came back negative for dwarfism and for downs syndrome. But some were inconclusive, meaning I have to wait until we see the geneticist.

So back to my story, once home I noticed Rachel's eyes were a little crossed and she didn't use her right one much. I called one more specialist and they saw us yesterday.

The results were a bit unexpected.
They are hoping she has a muscle weakness that will be fixed with patching. She is near sighted in both eyes and when she only uses her left eye, well this is the hard part. She is completely blind in her right eye. If, I hadn't taken her to the specialist and we had let this go or she had waited longer in the orphanage, it wouldn't be fixable, she would have gone blind...completely.
How scary is that??
So, we are patching her eye for a month and then go back to the doctor. She will reevaluate at that time but most likely, surgery will be scheduled.
The other thing, this particular need is associated with other special needs, mostly limb differences and I am thinking we really need to see the specialist in March.
Maybe our test results weren't conclusive...
I feel so conflicted, I am very thankful we were able to see the eye doctor but I also feel sad for Rachel. Not only will she have a very noticeable limb difference that won't be addressed until she is older but she will also have glasses, probably strong ones. In addition to what ever else we find out at the appointment in March. This will be a tough road for her when she starts school.
The only thing I am sure of, is I am her mama and will fight for whatever she needs.


Julie said...

Ah Desiree! I am so glad she has such a great strong family. I know with your help Rachel will be alright. BTW, Eric has one eye that is stronger than the other. The glasses really do help with that. He went from being 20/60 in one eye and 20/100 in the other eye (this is vision with the glasses on) to now he is 20/30 in one eye and 20/50 in the other eye with his glasses on. It was unexpected for us too.

Kelley said...

Desiree, you are all over it! I know that Rachel will be just fine with the love and support of such a wonderful family!

Faith, Hope, and Love said...

So thankful your beautiful Rachel is home. Praying they are able to help her and that you find the answers you are looking for. It has taken us over a year to get answers for Mia Hope. Who would think?

Jill said...

I have no worries that whatever your Rachel is given, the she will persevere with full force! How can she go wrong with you as her mama! Can't wait to watch her blossom!!!

Tami said...


My mama's heart feels for you. I can only say that before Sophie started school, I was nervous as well....thinking and loosing sleep over what are the kids going to say, how are they going to react?? The best you can do is prepare her when the time comes for how to handle the most common questions on her own, in a simple manner. She'll learn from watching you as she grows. Sophie and I made a game out of role playing in answering common questions that come from kids. Also, I pray Rachel will be going to a school, and has a teacher that is willing to partner with you. I have some great kid books on children being physically different if you'd like their titles. Sophie's k-garten teacher read one of those books to the class on the first day, which she said the kids were all over. This helped address Sophies limb difference in an open, positive and approachable manner. Honestly Desiree, the kids in Sophie's class and the school in general have accepted Sophie with open arms and we have had no issues. Sophie loves k-garten and is thriving. I know issues will eventually come up, but I just want to give you hope as too it's really been a positive, wonderful experience so far.


Chinazhoumom said...

Run don't walk to another city to see a specialist that she needs -not sure what insurance you have - but I am sure they can do a "bridge" if you are not able to get the care you need in a resonable time - (I work for a major medical insurance carrier)...She is adorable and I know you are doing all you can for her. I wish you and of course her, the best!
Carol in FL

Our Journey to China said...

I read your article and skipped over to your blog. We brought your sweet China girl home in March of this year. What a blessed family! God is so good! I was wondering what region and SWI you adopted Rachel from. She looks very much like our little Emma. Blessings to you all! We have family up your way.