Flor's Progress

Here is the long overdue update on our Flor. I know we haven't posted pictures of her sealing yet, but that is coming, don't you worry.

When I stop and think about what Flor was like when she first came into our family, I am amazed, really amazed, at the progress she has made. It is hard to notice it in the day to day, but thinking over the course of months, she has really improved leaps and bounds in many areas.

Flor is understanding boundaries so well now. She still likes to be friendly with people she meets, but she does not immediately try to jump on their laps or grab their hands like she used to do. She can sit still and remain in her own space (with prompting) for quite a while. She responds well the prompts "quiet hands" and "hands to self". The other day when we went to the splash pad, I was so proud of her because not only did she run through the water by herself, but she also kept her hands to herself and didn't pursue chasing after strangers in order to get their attention. Really, it is already like night and day difference.

Flor is also attending primary on her own, which has been great for Devin and I. We just provided the primary presidency and her teachers with some written instructions on how to handle certain things with her and she has done great. It is nice to just be able to drop her off and know that she will be okay! The primary kids sang the song "Families Can be Together Forever" to her the week after we were sealed and it was really special for me (I stayed there to to help Flor stand in the front while the kids sang to her.) Flor loved it-she had a big grin on her face and was bouncing up and down to the music.

Another area in which Flor is doing great is potty-training. Yes, I said it-- potty training! It's true. She doesn't yet understand that she needs to tell us when she needs to go (but she rarely communicates that she needs anything voluntarily), but if we are consistent in having her sit on the toilet every hour or two, she generally stays dry all day. It's so awesome! Seriously, this makes me so proud. Just yesterday, she had a doctor's appointment, so from the time she woke up at 7am until we got to Devin's parent's house (family reunion) at close to 2, we hadn't had an opportunity to take her to the bathroom, but she was totally DRY when we got to Devin's parent's. She got on the potty and went right away. This is becoming very typical. Such a good girl. Now we just have to get her to TELL us...

On the note of communication- Flor is using about 5 signs correctly on her own. She knows drink, eat, please, more, and thank you. She signs drink and more on her own during meal times when she wants/needs those things, which is a huge step forward as before she would use the sign correctly, but only after being prompted. Now she is starting to get that the signs have meaning and that when using them, she gets something. The little wheels are turning! She also has a PECS board and we are just starting to use it to help her have another way to communicate. So far, we just give her the picture of what she has (for example: water) and then if she wants more water, she needs to hand us back the picture. We re-iterate things a lot and use a lot of repetition to help her understand. We'll see how that goes!

I feel like Flor has made a lot of progress as she has been home over the summer, so it will be fun to see how she does going back to school (next week. Crazy!) One other achievement that she has learned this summer is to stand up by herself from the floor. She used to have to crawl to a piece of furniture or use a hand to help her get up, but now she can stand by herself from the floor. This is one of her IEP goals and she has specific steps to help her get there that she was going to be working on during the course of the school year. Well, goal achieved! Wahoo.

Doctor update: We saw a neurologist last week at Primary Children's. He showed us her MRI images and reviewed some of the things they saw. Overall, he felt that Flor's brain looks really good. She does have some little spots where it appears some damage has occurred and she had a few spots that could indicate a genetic disorder (and the fructosemia that she has is a genetic disorder, so that fits). He referred us to a liver specialist because her labs showed that some levels in her liver were elevated. We met with that specialist yesterday and he wants to see what genetics has to say before he decides a course of action for her. Everyone is relying on that darn genetics! Anyway, the doctor we met yesterday was really nice. He took a special liking to Flor because he served his mission in Quito and knew many of the areas, hospitals, etc. where she had been. He took a lot of time with us (as did the neurologist) and helped explain things on my level. Basically, her liver levels could be elevated if she is getting some sugar in her diet (if her diagnosis of fructosemia is correct-- that's why we need genetics!). He said that it makes sense that she will always have trace amounts of sugar in her diet, but if she were to have normal amounts, it could lead to liver failure. So, if the diagnosis of Fructosemia is correct, we just need to continue to be careful about what Flor eats. Her liver levels were just a little elevated and he expects that that will be normal for her, but we are to watch for other signs of liver problems.

We have appointments scheduled for the next month with speech and OT, the dentist, and finally genetics.  She also is supposed to be seeing a psychologist for a Psych Eval (required for DSPD-services for people with disabilities through the State) and that is turning out to be quite the nightmare to figure out. Turns out she is going to have to see a therapist first who can then refer her on to the psychologist. That appointment might be next week. It should be fun. Can't imagine how productive a therapy session will be for Flor? hahah...always something fun.

Anyway, so much to say. Overall, Flor is doing exceptionally well and we are so proud of her progress. She is such a loving and happy girl and always willing to forgive us for our shortcomings. She definitely brings a special spirit into our home. We love this girl and are so happy that she is ours!

Don't mind the bed head!

Oh and I had to document this-- on the way home from a doctor appointment, she actually fell asleep in the car! This is the first time I have ever seen this happen. She generally has to fall asleep by rocking herself, but she managed to fall asleep without this time! Nevermind that the nap only lasted 10 minutes (she is such a light sleeper-- I got a phone call and it woke her right up)- it was still an event to be documented. :)