So far so good

Emma is still pain free and happy over her botox! I have not noticed any major change yet but havent done her streching yet today, so we will see in a while what is going on with her. I honestly dont know why some people make sure a big deal about botox. Emma has had no pain, no issues, no crying at all. I guess it is just diffrent for everyone.

Ella is coming home today from her Nanny's. She calls Nanny "Jean" and she says "football" she fed some goats the other day and called them "Puppy!" she thinks anything furry is a dog. Emma is excited to get her sister home.

Botox

Emma did pretty today with her botox. They started an iv to give her the sleepy medicine before hand, and they had told me the nasal drug would work. But they tried the iv and missed in her hand and it swelled up. Then tried her foot and got a good vein. She slept good and woke up with a few small holes poked him her back from the needles but other than that seems pretty normal. She is sleeping now, and is still a little loopie from her medicine. We arent really supposed to do any heavy stretching today but in a few days hope to see good results! WAY TO GO EMMA!! I was so proud of her today

More shots!!???

Botox time. Tomorrow morning Emma will get her first round in her abductors and her hamstrings. I pray all goes well. She isnt very nervous but Mommy sure is. I really hope we see the results we are praying for. She really needs it to work so we can get her hips in and and get her weight bearing and get her to walk eventually with any luck! They will do it on her arms later. Please think of Emma tomorrow. I will update when we get home.

Flu shot time

Emma, Ella and Derek all got checkups and flu shots yesterday. Emma and Ella also got the Hep A shots. They all did wonderfully only crying for a few seconds, except Emma who didn't cry at all. She is my brave girl.

Here is the info on how big all 3 kids are in case you are wondering.

Derek is 48 lbs and 46 1/2 inches tall
Emma is 28 lbs and 32 inches tall
Ella is 23 lbs and 36 inches tall

The doctor said all looks good for Emma. Gave her a new cream to try on her face called Hylira, not sure if we are going to have it covered by insurance but they think that it is.

Emma also went to phyiscal therapy yesterday. They gave her new dinasplints for her legs. We are hoping that after next weeks botox shots she will really respond well to the splint use. She does ok with it now but botox is sure to help.

Thats all the update for now. Love to everyone

You give me fever....

Emma had a fever last night of 102. Poor kiddo. She isnt acting all that sick anymore but apparently she still is. Our night nurse woke me up and I gave her something for it and she went back to sleep and cooled down.

I hope she gets well soon. They are going to attempt to give all the kids flu shots on the 9th IF the shots are in and if Emma is running a fever they won't give her hers.

The rash on her face she has had for months is looking better. I have been putting lots and lots of oil of olay on it. I am almost 100% its eczema. I will ask the doctor about it on the 9th.

Thanks for checking our blog, I will update again soon

Icky Sicky Germs

Emma missed Physical Therapy today. She has the sick germ we have all been fighting with for the last two weeks or so. We have all had colds. Ella and Emma both had fever this morning. So far Emma is only a bit more gunky nothing too bad and has the fever. She has only needed oxygen for a few mins here and there and not any in the last 2 days. I am hoping she doesnt end up sicker and have to go to the hospital. I am sure she will be fine though.

Halloween went well. The kids got lots of candy! They want it for breakfast, lunch and dinner and I am always hiding the box. Derek was superman. Ella was a pretty devil and Emma went as an angel. We went out to about 2 blocks and ended up coming home becasue it was so cold. Emma slept though the whole thing! We didnt want to stay out too long since the girls were feeling icky and we all had runny noses!

That is the quick update for now, I will keep you up to date on how we are all feeling.

Party Pics

I posted a small slide show at the top of the blog so show you pictures from the big birthday party on Oct 7th that Emma, Ella, and Derek had. I hope you like it!

Happy B-day

Happy Birthday Emma and Ella!!! You turn 2 today!!

A big update

Lots to share, as I havent written in ages. First and foremost I should let everyone know that on Nov 17th Emma will be getting botox done in her hip area and possibly her hamstring area. So keep her in your prayers and I will of course let everyone know how it goes. Also Emma had her birthday party last weekend! Yoopie! She got lots of presents and I will post some pics here in just a min. She has her 2 year old checkup on the 23rd of Oct. She will be getting her shots. Poor kid. She is doing great. I will update a little more when I get a chance. Its dinner time

Went to lung doc today

Emma went to see Dr Royall today, for follow up from when she was sick in August. He said she looks ok on the chest xray. He said her last blood work showed that her Carbon Dix. levels were too low so he changed her vent settings some. It used to breath for her every 24 times a min and now its only 22 times. Its hot at our house, our air conditioner is broken again. It should be fixed soon. Emma's Nanny is coming over with her great uncle Jerry and great Aunt Linda. They are visiting from San Antonio Texas. They will be here any min. I will update later tonight or tomorrow how their visit went. Just wanted to post a quick something about seeing the doctor.

New movie

I have a lot of new pictures that my mom took at therapy on Thur, so I put on a new movie! I hope everyone likes it.

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