Now those pictures might not seem like much but to those of you who have seen her hands you know there is a lot of improvement with them. Here are some videos. One of hands and one of Emma and Ella being cute.
Wednesday, June 27, 2007
Posted by LJR at 8:59 AM
Sunday, June 24, 2007
I took pics and video of Emma's hands with our webcam, they came out kind of bad, our webcam isn't the best quality, but I will get some good pictures taken in the next day or two. My mom was going to come over today but everyone is feeling sick, I have a cold and Emma's Poppy had a fever, he is ok just a little sick. When everyone is better we will get some great pics for you guys to see.
The pictures really do not do her hands justice. They are MUCH improved, so much more relaxed and open and we are thrilled beyond words. They have even improved from the pictures which I took on Friday
Posted by LJR at 9:03 PM
Friday, June 22, 2007
Well its offical folks, Emma's botox for her hands is working! I am so excited. I cry almost everytime I look at her hands. I thought her night nurse DeLene was going to get choked up last night too.
They used to be in super tight fists. Those of you who have tried to hold her hand know how difficult it was. Now you can slide your fingers up under hers with ease. She is in more of a C shape now with her hands, they are not all the way open but they are getting better. They are so much more relaxed too. They feel diffrent, they look diffrent, they are so very sweet. Her hands have not been sweaty and stinky at all the last 3 days.
Last night I got to do something I had not done since her NICU days. I got to kiss the palm of her hand. She kind of cupped it around my mouth, it was funny. Her hands are so soft and so pretty.
Its botox +5 days and they said we would start seeing improvement in about a week, so I ask that you continue to pray for her and think of her and hope they continue to improve. I feel silly asking for more improvement when we already have seen some but I its like a drug now, I got a little taste of success with them and now I want more! :-)
Most parents get to brag when their child starts crawling or walking or gets potty trained. I have not got to do that with Emma, and it sure feels like to brag now. WAY TO GO EMMA LOUISE!!!!! WHAT A BIG GIRL!!!!!!!
Posted by LJR at 9:10 AM
Monday, June 18, 2007
All went well at botox today. Emma did beautifully. She never cried and she was soooooo brave. They gave her nasal versed. That means no iv! She just got stuff squirted up her nose and it made her sleepy. We brought her Homer doll and a picture of her boyfriend Homer, which sat by her bed the whole time, when she woke up his was the first face she saw. She has really taken to staring at his picture. He is adorable.
They gave her a type of botox called myobloc which is diffrent from last time. It has a side effect of dry mouth so we are hoping it will help with her drool issue. They put the myobloc in her hands like we had talked about but did not do her hips, he did however put it into her spit glands. Again in attempt to dry her drool up.
The full effects take about a week to see, so everyone pray her hands open up some and that her drool fountain mouth gets better! Thanks for all the prayers they really helped make things go very smooth today.
Posted by LJR at 7:35 PM
Sunday, June 17, 2007
Here are a few pictures from Brandon's birthday party. Emma drooled on her dress in some of the pictures, but she is still beautiful. I helped her pretend to bowl, it was just too hard to bowl when you can't open your hands. Emma gets her botox tomorrow so everyone please pray things go well and we get good results! Who knows maybe the botox will be a miracle and we can get her bowling before long
Posted by LJR at 9:57 AM
Friday, June 15, 2007
Emma's cousin Brandon turns 9 today! Happy Birthday Brandon. Emma will be going to the bowling alley to help the big kids bowl today. If its not raining, since we have to walk, its only 5 mins down the road. Its hard to take Emma and her vent out in the rain, everything is supposed to stay dry. I hope to have some pictures to post in the next day or two of her bowling with the big kids. She will most likely just watch since her heands won't let her hold the ball or throw it. Not sure Ella will bowl either but Derek is going to for the first time, that ought to be interesting.
Posted by LJR at 9:34 AM
Emma will be getting botox done this coming Monday June 18. She will be getting it in her hands to try to open them up and also in her hips again. They will be giving her medicine to make her sleep during the procedure. Please pray with us that the botox helps a lot. Last time it did help her hips a great deal but more is needed to get things where we want them. I pray that it helps with her hands and is a miracle of sorts for them. Her hands are so tight, they are constantly in fists and it makes her fingernails all erroded. It would be so nice for her to open her hands and let her nails grow so I can paint them like her sisters.
I will keep you updated, it will be at 1:30 CDT on Monday and we should be home around dinner time, I will try to post that night.
Posted by LJR at 9:28 AM