Emma's hands

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

Its Offical

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!!!!!!!

Emma's botox went well

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.

Pics

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

HAPPY BIRTHDAY BRANDON

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.

Botox coming up

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.

PT today.

Emma has physical therapy with Amy today. She did a good job, she got sleepy about half way through but she was just working so hard. She is doing good with her head and is trying to sit up on her own some. Her balance is getting better I think.

They found some baby bunnies today on their property they were really tiny and so cute. I didn't count them but there were maybe 5 or 6. Emma liked looking at them. They are going to take good care of them, I guess the Mommy has run off. They were almost drowing in their little bunny hole with all the rain we are having.

Emma's therapist Amy is about 31 weeks pregnant now, she is as far along as I was when the girls were born. We are so happy for her. Amy is getting married June 2. They are having an outside wedding and it looks like rain so everyone please say a prayer that it will stay dry. Amy is a very special person to our family and she deserves a perfect day.

Emma has a pretty busy week next week, last day of school graduation for bubba, a renal ultrasound on Mommy's birthday on the 30th and then physical therapy again too. She is loving getting to go outside so much, she even liked the rain today!

I guess that is enough update for today. Thanks for stopping by.

Walk America 2007

Well our Walk was last weekend. We managed to raise a total of $355 for our team. We had a great time. The girls got medals during the preemie parade and everyone clapped for them. It was so sweet. Above are some pictures of our day and I also have attached 2 vidoes. One is just a slide show of pics, the other is a video of the girls and cousin Brandon getting their preemie awards.

Mothers day and a few other things

That is me and my girls on mother's day. Derek was too busy to get in the picture, he hates having his picture made anyway.

I had a prety nice mother's day. Derek picked me out some flowers and bath wash stuff and Emma (thanks to help from Nanny) framed me a beautiful poem. I love it so much. It is hanging by pictures of her and Ella.

We will be going to our March of Dimes walk on Sat and I plan on getting some new pictures made, the ones my mom took yesterday did not come out that well, the walk pictures will be outside so they will look great I bet. I have met my goal on raising funds but my sis needs help still anyone that can please donate online at She is on my team and we are about $125 short of meeting our team goal right now.

Emma is doing great. She had a long day yesterday with Grandmother, Nanny and her off duty nurse coming to visit. She stayed up for a long time and she actually slept all night long. She sends her love to all of you.

Happy Mother's day

Just a quick stop in to wish all the Mom's out there a happy Mother's day. Emma's two grandma's are coming over today for a while and when Nanny is here she is going to take some pictures of our day, hopefully I will have them up for everyone to see tonight. Until then have a wonderful Mother's day!

In Memory of a beautiful town...

On Friday the 4th of May, a huge EF-5 Tornado wiped out the town that Emma's Great Grandpa lives in. He walked away with out a scratch. Above is a pic of him given Emma some love and attention at her birthday party. We thank God Grandpa is ok. We spent many sleepless hours on Friday trying to get a hold of anyone in Kansas and searching the internet for information.

But at about 5am, 7 hours after the tornado hit, we got word he was ok. He had gone to the hospital to seek shelter, parts of the hospital did collapse and it was badly damaged. He is now staying with Emma's grandpa in a nearby town. Emma
s Great Grandpa is one of my most favorite people. He is so loving and sweet and just an all around good guy. I can't express how wonderful he is. Usually when I tell people about him I tell him he is the nicest man I have ever met. My grandparents have all passed away but even though we are related by marriage only I still call him Grandpa and think of him and love him like he was truly my own. He lost his wife when I was pregnant with the girls, and she was an amazing person too. Emma has her middle name. Louise.

The entire town of Greensburg is damaged severely or just plain gone. We ask that all our blog friend say a special prayer for the town. It was such a beautiful town and it is made up of some of the finest people in the entire world.

As of today 10 people have died. They did manage to pull 2 people out of a church alive yesterday. False reports came in about a survivor the night before though.

I urge all of you to not only go look the tornado info up online, but to also just look up Greensburg in general and see pictures of how beautiful it used to be. I hate seeing it on the news now, I did ok not crying too much except when we didn't know if Grandpa was ok. But then yesterday I cried knowing that Emma and Ella will never be able to go to Greensburg. Well not the old Greensburg anyway. The one their dad played at the park in, went swimming in, and basically ran around causing trouble in as a child. No letting them see Grandpa's house, the store he worked in, or the big well that was its claim to fame. I know they will rebuild but it won't be the same.

Dr Visit today

Emma went to see Dr Wright today, he is the one who does her botox. He is going to try her on a medicine to see if we can reduce her drooling, we actually have to get a call into them again, because the prescription they gave me can't be filled the way its written.

He also said that he is going to do botox in her hips again and in her finger flexers so hopefully we can get those hands to open up! YOOPIE! I really hope that works, it will be nice to see Emma more relaxed, she always looks like she is ready to get into a fight with her fists all tight like that. We go in on June 18 for the botox.

We also talked to the nuerologist (brain doctor) because Emma is starting to do her little jerks again. They are called myoclonic jerks or spasms, they are not seizures but are quick little "Startle like" jumps. We go see Dr Parke for that on Thur afternoon, after physical therapy. I am shocked they got us in so quickly, we got an emergency appointment, I am sure all they will do is up her Zonegran pills, those have been a cure for the jerks in the past.

That is all to update for now, I will write more when I have more news to share.

Therapy and such

Emma did very well today at physical therapy. Amy has informed us that since Emma is doing so well she would like to cut our visits back to every other week. We will miss Amy but it will be nice not to have to drag her out there and get her around so many germs every week. If it doesn't work out we can always go back to weekly trips. The JD McCarty center is just such an awesome place and we love it.

Speaking of Amy I havent mentioned this before because I didn't want to ruin any suprise or jinx her but she is having a baby! A litle boy and she is due in July. I am just so thrilled for her, she will be such a good Mommy. She takes such good care of Emma for me. She hasnt spilled the beans on her son's name yet so we will just have to wait until July. CONGRATS AMY!!

We are still house hunting and hope to move in June if not before then, but I am thinking June. I am going to Dallas June 1-3 with my sister and leaving Emma with Daddy and brother and sister. I need a vacation. Its my first ever! :-) I will make sure to take pictures, as I know many of you will want to see them.

Emma is doing wonderfully and we appreciate everyone's prayers and good thoughts. THANK YOU!

Another quick update

Just an update, not much to talk about. Our computer was done for a few weeks so I didn't get to write. Sorry.

Emma is doing about the same. We have a chance of tornados today and I am running around like mad trying to get ready for them. Getting supplies packed and what not. The last weekend in March we were put in a surprise tornado warning and I was not prepared to seek shelter, we made it but it was chaos. Today I want to be ready. All of you from tornado alley know that its probably not a big deal but its better to be prepared.

I added a map to Emmas page go sign your name to it and it will show everyone's location. Our goal is to get someone saying prayers or thinking of Emma in all 50 states and throughout the world. So pass it on to friends if you would like. Its at the bottom of this page and will remain there for a while or click here:

Great pic drawn for Emma by her favorite girl cousin

Emma's cousin Liz drew her the best picture ever. Elizabeth is 12 and is a great little artist. Emma adores her. Emma is doing fine just wanting to share her pic, please leave comments on it, Elizabeth reads the blog and I want her to know how great she is.

March 13 Update

Just a little update, not much to say. Emma is feeling and doing fine. She is doing ok with her new hand splints she got at thearpy but she keeps getting out of them, the little stinker! Yesterday was our puppy Violet's birthday but we are having a "party" for her tonight.

We are planning on moving into a house soon. In the next month I hope. We are currently looking, we want to get Emma a bigger space and we for sure how to get Ella and Derek their own rooms since they drive each other nuts and are getting older and need their space. Ella tears up the bedroom and then Derek cries.

The other night Ella choked on a piece to a toy. She is ok, she never turned blue but was really scared and making funny noises. The hemilich and baby hemilich did not work on her but Dad managed to pull it out with his fingers (a last resort) so I urge all of you readers to watch out for the small things, even toys you think are safe aren't. This was part of a wind up toy they got at the doctors office of all places. Also brush up on your choking safety skills. We were very lucky we knew what to do.

Emma is still not sleeping very much at night, she slept 3 hours last night and is wide awake now, I bet she will be sleeping in the next hour or so and will sleep all day. We have made attempts to help keep her awake during the day and sleeping at night but she just wants to be a night owl like her dadddy I guess.

We lost some of our nursing so we are back down to 3 nights a week again. Very tiring on Mommy but Emma sleeps better those nights because I can turn all the lights out. We are just having issues with the nursing company getting us nurses that work out or can stay. DeLene is our only nurse now, and for those of you who have met her than you know what a blessing she is.

Hope everyone is well and that we have some good house hunting news to update you with soon. Have a wonderful week!

A little update

Emma has been off and on sick for a week or so but I think she is finally well. Now Ella has a fever and has been a huge grump. It was 102.2 when I checked early but its down now thanks to some motrin.

Emma has become great friends with her little boyfriend Danielthat we met on myspace. He send her presents today. His mom also made sure to send something to Derek and Ella too. The kids just thought it was Christmas when the UPS man showed up at the door. This new family we have made friends with have been a real God sent. Its nice to talk to someone who is going through and has been through a lot of the things we have. Plus its just nice to be able to chat with someone. Sometimes I get kind of bored hanging around watching kids all day.

Emma's stye is gone and her eye looks all pretty again. We went to therapy last week and Emma enjoyed seeing Amy again. We will see her again on Thur of this week and we are glad. Emma likes to get her work out and her cuddles from Amy.

Thank you all for sticking by and reading the blog here, I know that I don't update very often but sometimes that just means that life is moving along with no big issues to update on and that is a good thing.
God Bless all of you.

Something beautiful

Something so beautiful I just had to share with all our blog readers...

Some new pics of Emma

Update

Sorry I have not updated in so long, there hasn't been too much to talk about really. Emma has a slight cold today and fever, she is doing ok though, nothing major to talk about. She now has a total of 6 teeth! All still on the bottom but she is working on number 7 also on the bottom.

She has a boyfriend now. We met him on myspace. His name is Daniel and he has CP like Emma. He has a trach but no vent but looks just like Emma! He sent her a braclet for Valentines day and it says Daniels loves Emma on it, its adorable. His mom has been so sweet to me and has become a great friend, its great to met someone who knows about the things I am going through. His only downfall? Well he lives all the way in Michigan! Oh and he is 5 years old, so I guess Emma loves older men.

Emma got her very first stye in her eye, its almost gone now though. She reminded me of cousin Elizabeth when she got it, Elizabeth always used to get them. I have some new pics of Emma, I will post them in just a little while have to go tuck all the kiddos in bed!