Botox!! Not just for looking younger.

Here is a nice pic of Emma and Mommy at therapy yesterday. I am going to see about making her video with a few new pictures in it so check back and play it soon! We went to therapy yesterday and it went well. We went to see Dr Wright today. He is weaning her off her Klonopin since its not helping her muscles much and it is making her hair fall out. He wants to do botox in her hips and possibly her hamstring areas, and also another medicine that is injected into the nerve in her biceps for her arms. The botox for her hips and possibly other places will be set up to be done soon but it can take 4-6 weeks to get in for an appointment to do it. They will do it with help of xray and it will involve sticking a needle in her back, touching her bone with it, going just under the bone and injecting the botox. Hopefully it will help us get her legs out straight. He will be giving her medicine to sedate her a little, through her nose since she is such a hard stick for an iv. It sounds really painful but we really think botox is the best choice for her to gain some use of those muscles. I will update when I know more about the date and stuff. She will be sore for a few days after, and will have to have it redone every 3 months or so. I am trying not to get my hopes up and expect a "miracle" of sorts with the shots but they sound very promising. Thanks for checking on Emma, I will update again as soon as I get more info!

Bragging about Emma's nurse

I have bragged on here about Emma's PT now its time to brag about our nurse DeLene. She takes such good care of Emma. We have had some trouble with getting the nurses we need and we are down to just DeLene 3 nights a week and are out of luck for nurses the rest of the week. DeLene was the first nurse ever to come to our house, she came July 5, 2005. Has been here come rain or shine, snow or sleet. Emma loves her so much. She is a great nurse and I had to share her with everyone. We are so lucky to have her. God Bless DeLene!!!!

We found out a few days ago that Emma's Uncle Adam (Daddy's brother) will be getting married on Oct. 8th. Emma will be getting a new Aunt. Welcome to the family Aunt Summer! We haven't met her yet but I am sure she is nice. Not sure if we will all be going to the wedding or not, it just depends on if we can find someone with a van or big car to pick all of us up and take Emma's equipment.
Emma has a few appointments coming up. I will make sure to keep you all updated. She goes to PT on Thursday, her rehabilitation doctor on Friday, to talk about her medicine and possibly the botox injections.I also have to talk to him because her Klonopin is making her hair fall out. A lot of hair has been lost. Its a normal side effect of the medicine but I don't like it! She goes next Tue for an xray and follow up at her lung doctor. I am sure her xray will look good, she is doing much better.
Brother Derek's ears are better today, but he said he still doesn't feel to good. He went to school and did "nothing" all day. I asked what he did today "nothing" and if they sang a song "no we did nothing!" Wow what a fun school. Ha Ha

Mommy had to take someone to the hospital last night at 4 am and guess what? It was not Emma. It was Derek. He has been fighting a cold for about a week and went to the doctor on Wed. and all checked out ok. But last night he could not sleep and he said his ears hurt. So we went to the ER and he has a double ear infection. I am very tired, Dad is very tired, and Derek is just plain worn out. I have to go pick up his antibiotics soon. Everyone please pray for him, he is in a lot of pain. He is never sick and he is very tough so its pretty bad when he is sick. Thanks.
Since this is Emmas blog I guess I can also update you on her. She is doing great. She and Ella both got great rests last night. They are up playing this morning. Last time I looked Ella had dolls all over Emma and was making them "talk". Girls are so cute.

Emma loves Amy her physical therapist. She did very good at therapy today. I am so glad that we have Amy and I know we are lucky to have found such a great therapist. Emma responds well to Amy. Therapy went good we did the same old things, positioned her and stretched her. Emma had to go out in the rain today, but we are lucky it stopped raining right as we loaded up to go to therapy. I think Emma is starting to get excited about her birthday party which will be on Oct 7 , or atleast Mommy is! I cant wait to watch my girl have a party, last year we just had a small little get together at home. I am excited to see what Emma thinks about all the party things. I dont know if I have touched on this or not but Emma has only had 1 seizure in the last month, and her shaking has stopped almost entirely now too. Although she was a big jumpy today at therapy for some reason. Not much else to update today, sorry. Just another day in the life of a sweet little angel named Emma.

Touching poem

Emma's Aunt Lisa (Mimi) put this on a comment here but I thought it was too pretty to hide away so I am posting on the main page. I hope everyone likes it.

You aren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so he sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and love,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

Quick Update

Emma went to physical therapy yesterday. She did pretty good. She got to get on the swing again with Amy. She likes that. We also talked to Julie about her feedings and we are thinking of changing the type of food she gets to see if that helps with the rash on her face. She is still a very big girl so we might have to make a few changes to help that too. She is about 30 lbs now. But I think she has also grown taller but its hard to tell, because she is so drawn up all the time. She had to use a little oxygen last night. Not much and not for very long, could be she just isn't all the way over her infection she was hospitalized for. Or she could have a small cold, but I don't think she does. She is doing fine now. That is about all I have to say today, not much going on, just waiting to watch OU football again. Emma loves it. Go Sooners

HAPPY BROTHER TO MY BIG BROTHER!

Today my brother Derek turned 5. He is a great big brother. I love him so much. He helps turn my feeding machine off, suctions my mouth and nose, talks to me, plays with me, and brushes my hair. He is a good helper. He makes me want to smile when he gives me kisses. HAPPY BIRTHDAY DEREK!!!

Remembering those lost September 11, 2001

God Bless America. Love Emma

Not much to say but here's an update

I just realized I had not updated in a whole week. Not much to update really. Emma had a good week. She is having no seizures since leaving the hospital. Its wonderful, she is so still sometimes I forget she is sitting by me! We tried out a new nurse on Thur who is not going to work out. She just didn't seem interested in being here or asking questions. She didn't know how to work Emma's vent (she had some training but not on this type of vent) and when we tried to show her she paid no attention to it, and I had doubts that she would be a good nurse for Emma at night time. So we are still down to only 4 days a week with nurses. I am handling that ok. No nurses on Friday, Saturday or Wednesday night. I am tired today though because guess what the silly mommy did? I broke my toe! I hit it on Emma's stander. So needless to say between the pain and getting up with Emma last night I got zero sleep. OU football plays again today. Emma says "GO BIG RED!" I hope we win again, last week was a close call. Emma sure loves watching the game. She just stared and stared last weekend. She is looking forward to todays game. Thanks for checking on Emma sorry I dont have more to talk about, check back soon.

ARE YOU READY FOR SOME FOOTBALL?

GO OU! Emma is getting ready to watch the game in a few hours, wearing her OU clothes and getting ready for our cook out. I hope she stays awake for part of the game. We are so close to Owen Field if we open our windows we can hear the fans!

I hope everyone like the new look of her blog, I have been playing around lately and some of it has been hard to read. I like this look though.