doctors, hospitals, and tests- oh my

I am aware that I have not updated on Flor in a little while, so here we go! I actually can't remember what I last blogged about in regards to Flor's world, so forgive me if I repeat.

It is basically insane to me that it has been 10+ months since we have had Flor in our family. Unreal. I get asked all the time how things are going and my honest answer is that things have improved dramatically for us as a family as the months have passed. When I look back on the first few months of Flor being home, it just seems like a blur of chaos and crazy emotions. I think the hardest thing for me was not knowing how to communicate with Flor and not knowing how to meet her needs in the way that I could with Hallie and Jace. Now, though, I feel like we are in a place where I have that intuitive understanding of what she needs and wants, even though she can't usually express it to me. Feeling that I can provide for her and care for her in the way I want to (though of course there is always still work to do) has definitely had a positive effect on my bonding with her as well. Another positive thing is that I have noticed that I can now generally soothe Flor when she is upset; whereas in the beginning she oftentimes resisted soothing. Wahoo for that.

Flor is doing really well with following directions, understanding what we ask her to do, and has also greatly improved with her social boundaries. She can sit still on a chair by herself during appointments for the most part and if she gets up or moves into someone else's space, she generally only needs to be prompted once or twice and she will return to her seat. It's fabulous, so so fabulous.

Let me be honest and tell you one thing that has been harder than I expected in this process. That is being told all the time how "amazing" we are by other people. This makes me cringe and brings on waves of guilt. Why? Because no one knows what happens behind closed doors at all times. Having Flor has tested my patience in a way I have never been tested before. I still fight the tendency to become frustrated with her for little things. It has been such an eye opening experience for me to see such weakness in myself. Again this goes back to her lack of ability to communicate with us, plus the history she has that I will never fully understand. When I don't understand her behavior or what to do to help her not do certain things, it frustrates me more than it should. I  have learned that Flor responds well to time-outs and that time-outs for her are also a good time-out for me so that I can take a minute to breathe and calm down. The behaviors that aggravate me the most are hair pulling, biting (herself and others), scratching, and pushing. If left alone with other kids for even just a minute or two, Flor quickly and inevitably does one or more of these things. If she is supervised, she knows not to do anything, so of course we try to supervise her as often as possible, but watching her 100% of the time is just not possible. Anyway, so yes,  know that being told how "amazing" you are when you feel completely the opposite at times is difficult. I am learning more each day that Flor's coming into our family is for our learning and growth. What she provides for us is invaluable in our lives and the lives of our other children.

Appointment updates: Our insurance has still not approved Flor's blood sequencing that the geneticist recommended. Oh, insurance. Sigh. Hopefully we will have some answers on that soon. She had her psych evaluation a few weeks ago and what was supposed to be four hours ended up being one as the psychologist quickly saw that four hours of testing would not be necessary. The one hour she did have consisted of an nonverbal IQ test. Basically Flor was shown three pictures in sequence and then she had to pick from a row of choices which picture went next. Hahaha. Can we just say that again? Hahaha. She thought it was great fun and pointed at whatever picture (or every picture) that struck her fancy, usually while looking around the room and laughing. She got some right by pure chance, but it was mostly just a fun game for her. She lost patience quickly with this, so she got to play for a minute and then would come back to it. Anyway, the report has been filed with the state so that Flor can hopefully get qualified for DSPD services. We have one more step to complete (which will be happening this coming week--wahoo!) and then hopefully she can get on the waiting list.

We saw an orthopedist this week at Shriner's Hospital in SLC. She took x-rays of Flor's pelvis and hips to ensure that there are no physical issues that are preventing her from walking more steadily. Flor has a really wide and unsteady gait and she walks rather slowly, so we just wanted to see if something was going on. Everything looks perfect, though, so the doctor thinks that it is more of a brain-not-sending-clear-signals issue versus a physical abnormality. This doctor referred Flor back to Primary Children's for an MRI of her spine. She also wants her to start ST/PT/OT services at Shriner's as they are the best around. She has an evaluation for all three in two weeks and we will see what they want us to do. I am not sure that it will be practical to keep doing these services there as it is an hour drive, which will not be feasible on a weekly basis. If they think seeing her once per month will be good enough, we could do that, but otherwise we will probably need to see what they can do to refer her to services that are closer to our home.

So, phew. I think that's it in the appointment area for now.

And, to end this beast of a post, let's save the best for last- a few pictures of this darling girl.

PS. Her tooth is coming in! Really crooked, but coming in. Do we see braces in the future?? Yes...not sure how that will go, but her teeth could definitely use them...