Has it really been almost 3 months since I updated this? Sorry for whom ever reads this. I was going to be so good about keeping this up. I guess a lot has happened in the last few months. Elle did get her surgery, she had a Gtube put in and a fundoplication surgery. Also during the surgery we found out she was tongue tied. They clipped that too. Recovery was a little harder then we excepted but we made it through. Since surgery she has done awesome. Gaining weight , eating like crazy, and has even learned to start chewing. Recently she has started making more noise. screeching like crazy, slowly finding her voice. Next week we go in for another hearing check and throat check. I am excited to have another hearing, since getting her tubes put in her hearing seems to be improving more and more each day. We still cant get her to drink anything. but its all a work in progress.
Her development has gone up quite a bit. She is now around a 12-15 month old. She amazes us on how fast she can learn things. Communication has still been a challenge, being non verbal and having such low vision. Sign language is challenging for her. So after some research from her eye doctor and having her file reviewed at the vision department of Idaho state university . we have decided to try tactile symbols . I have never heard of it or ever worked with anything like it. But we are getting all her therapist on board and hope for a positive reaction. We will start small, this week only working on one, a spoon . she feels it each time before we have a snack or a meal. The idea is that some day she will be able to bring me the spoon to tell me she wants to eat. Next week we will add another symbol. Such as a small piece of fabric to tell her its bedtime or nap time. We will add a new item each week till we have our schedule down. Then once she gets those memorized we will work on other things. Its a lot of work but if it gives her a voice then its all worth it.
In November she got the stomach flu. That was scary because of her surgery . she cant puke, instead she stared ripping internal stiches. We ended up in the doctors they put her on anti nausea meds. They next night went pretty bad, the wretching got really bad , it was so hard she pushed scar tissue out of her gtube site. They resulted in a night in the ER. Poor girl has been through so much. But through it all she kept that smile.
Christmas was fun. She loved the wrapping papers and all the boxes. Didn't really care about the toy inside. But once all the wrap was cleaned up she did enjoy her gifts. We did manage to get sick over Christmas too, the flu. It mostly just wiped out mom and dad but a few kids got it. Elle and I missed one family Christmas due to me being so sick. Elle got a little touch of it but for the most part stayed healthy.
A start of a new year will hopefully start out without any sickie bugs. We are back in full time therapy. We see PT, OT and speech each week. We are also starting the process of getting visual therapy.
Elle's likes-
Ac, the dog
eating, everything and anything. Its shocking how much she wants to eat. If she would start drink something we could easily get the gtube back out. I think will having the acid reflex under control , she feels so much better. pus it stopped the vomiting.
ripping everything out of the book shelves
lighted toys
music, she loves it. she had so much testing done before her surgery and the only thing that kept her calm was listening to music.
Going down stairs into the big boys room
going bye bye
giving kisses and hugs
sitting between mom and dad
Elle's dislikes
the blender, she has regress in this area. She was fine with it before but now cries the whole time its on( another reason we think her hearing has improved)
headphones, why we dont know she doesn't even like people wearing them well they are holding her
to many people around her, I am sure due to he low vision. hard to keep track of where everything is and whos who
getting her gtube site cleaned
bathtime
water at all...unless it is the small spray bottle used to wet her hair before combing she likes that one
mommy going bye bye without her
to bright of rooms
grocery carts, scared to death of them
