Ok so whats the latest! Well we are all hanging in there, staying busy busy with school, Drs appts and family outings. Easter was great the kids had a blast hunting for the eggs and we really enjoyed hanging out with the family and surprisingly did not stress the kids just hung out with their cousins. It was a great visit. Missed my family dearly, wished they could have been here with us.
A few Dr. appts that happened this week were for Cami. Sunday evening she started walking kind of funny checked her diaper it was a dirty and unfortunately it burned her bottom. It was so painful for her so I took her to the Dr on Monday where he took a look and said she had what you call an acidic bowel. Causing very painful burn marks all over her bottom areas. It was very red and blistered looking. Diaper changes where a hassel so he prescribed her with a cream called Happy Hiney. When I picked this med up it was a very small tube that was maybe 2/3's full that cost $25. I said my goodness that must be some good cream and the woman said it is the best. I said she better have the happiest hiney around.....LOL! Well turns out that stuff starting working the first application. She went from screaming to diaper changes to now no fight. It is almost all cleared up.
2nd appt this week was at Vanderbilt for her Behavioral observation. We mainly just did paperworks, he asked us lots of questions to see if there had been any changes. Then he went out of the room and watched her play from the window behind us to see how she did. What he saw is that she only wanted to play while sitting on our laps. I tried to encourage her to get down to play where she proceeded to get mad and start a fit. At home she is very dependent wants to be sitting on you or beside you while she plays. She is overly affectionate, such a sweet heart she is. She played with a magnadoodle for most of the time and even tried to sing her ABC's which really just consits of A, B then she hmmmmmmmmmmms the claps its the sweetest. We tried showing her over and over how to clear the screen but she would just keep wiping it with her hands and never caught on to how it worked. She played with a truck and then a musical toy all that she brought to us wanting to sit with us to play with it. The appt was short but she goes back on Monday for her 2hr testing. At this appt they will test her on what she knows. Puzzles, pretend play, cars just seeing if she plays appropriately and to see if she understands how things work. Cant wait to see the results.
He asked us what we thought was going on? Seriously??????? Thats why I was there, hoping he would know. Yes she has Developmental Delays and yes she has Sensory Issues, but what else is going on I dont know. Like why does she not do well out of her norm. She has easy meltdowns and loud outbursts. And why is it taking so long for her to catch up? It was 2 years yesterday since she had a seizure. I thought things would just take off and things didnt really start to open up for her till October last year. Speech is still said to be at 18-20 month old level. She is trying so hard and is making progress but why so slow? Was there lots of damage done during those seizure days. 100's a day for almost 2 years maybe so. I guess we will just never know. He made the comment that he wished we could just open her lid and see whats going on in there. Or just be able to ask her what she feels. Oh the questions I have for my girl....I just want to know when she hurts or if she is hungry and her come to me to tell me these things. What a day it will be........
I'll update next week once we have results. I also have a bun in the oven appt next week at 19 weeks. So tune in soon! Until then here are some of my fav Easter pics from Sunday:
My lil Cami had no idea what to do. I took her over and said look Cami and she ewwwwwww ball. She picked it up gave it a good look over and I told her to put it in her basket and then praised her when she did. She soon caught on and would say ewwwwww ball everytime she came across one.....it was the sweetest! Isnt she the cutest bunny around?
Good Easter egg hunting Caleb!
They couldnt wait to see what was inside.
We've got to get the kids one of these, it was a big hit!