Happy Birthday to Derek

HAPPY BIRTHDAY BUBBA DEREK!
Emma's brother turned 6 today. He has had a good day so far. I went to put the candle in his cake I made and broke the cake and pyrex pan all over the floor! I felt so bad. Pyrex shatters by the way, and splinters. I poked my fingers a few times but managed to get it cleaned up. I put a call into Emma's nurse who is coming to work tonight, to see if she can get a ready made cake at Walmart on her way down. I am so glad I have nursing tonight or we would be out of luck. I hope she can do it!

Emma went to physical thearpy today. She was really good for Lucy. She tried and almost rolled from her side to her back, we just didn't want her doing it at the time. She started talking to Lucy and she was singing and talking so loud that people came to see what she was yacking about! It was so cute. She was soooo talktive today it was adorable.

We found out her old thearpist will be back Oct 1. Emma will be glad to see Amy it seems like she has been on maternity leave forever and we are ready to hear stories about her little boy Huck.

“Today, we gather to be reassured that God hears the lamenting and bitter weeping of Mother America because so many of her children are no more. Let us now seek that assurance in prayer for the healing of our grief stricken hearts, for the souls and sacred memory of those who have been lost. Let us also pray for divine wisdom as our leaders consider the necessary actions for national security, wisdom of the grace of God that as we act, we not become the evil we deplore.”
- Rev. Nathan Baxter, Dean of Washington National Cathedral Sept 2001

Mimi sings so pretty

This is my Mommy's sister, my Aunt Lisa, I call her Mimi, she made a CD at Opray Mills recording studio when she was in Nashville a few years ago, hit play to hear it, but make sure you go the the bottom of my page and hit pause on the music that is already playing first.

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Reduction in Nursing

I just got off the phone with Emma's lung doctor's office. They have agreed to reduce our nursing care from 6 to 3 nights a week. Now a lot of you know the trouble I have had with nursing, from sleeping nurses, to the one that went outside while she should have been working! I have one nurse now DeLene, the one we have always got along with, she is a wonderful nurse. On the 4 nights a week we get off I am going to sleep on a fold out bed next to Emma, which is pretty much what I have been doing all along anyway. We have been down to 3 days about 50% of the last 2 years anyway.

I am happy though because it means the nurses that would be at my house those other 3 nights (if they found me a replacement) can go to other houses where they are needed more. There is such a lack of nursing and some people can't even bring their kids home because of it. It always bugged me we had such more nursing and such little need for it. DeLene is wonderful don't get me wrong, but she only changes diapers, starts food and on occasion suctions Emma. That is way less than an hour she is working the whole 12 she is here! The other times we just hang out and she plays with Emma, Derek and Ella or watches tv. Still I am glad we have her those 3 days to give me a break.

So I am hoping this ends some of the red tape and hassle with the nursing company, since they don't have to actively search to fill days for me any more.

Emma got a haircut!

Before

Another before

After

Smoosh face



Yes, its offical she is a big girl. Yesterday, I cut Emma's hair for the very first time ever! Its not too bad. She didn't mind at all and it looks way better. Her hair was so many diffrent lengths and she had kind of a mullet style before, it looks pretty now. Its cut a lot like Ella's except Emma does not have bangs, I left them long and pushed back. The pics don't show too much front but taking them from behind was best for the point to get across. Let me know what you think!

Another update

Last night Emma and the rest of the family went to visit brother's new school. He will be in Kindergarten starting Monday the 20th of August. Emma slept through the entire thing! She rode on the bus there and we walked home, she woke up only when she heard the train we stopped to watch at the train track close to our house. She likes trains I think.

She is doing well. She went to therapy yesterdy and her therapist Lucy made her sleepy too. I think its the heat, she likes to sleep when its hot. Lucy has taken over for Amy for a while because Amy had her little boy not too long ago, his name is Huck and he looks adorable.

Emma is getting a haircut this weekend. I will be posting before and after pictures hopefully on Monday or Tuesday. We are cutting it at home. Its pretty long, and she has never had it cut before but its kind of broken in the back and a bunch of diffrent lengths since she lays or sits on it all the time.

Emma's friend Kara is sick and in the hospital so Emma asks everyone to say a little prayer for her. Not much else to update so until next time thanks for reading and thanks for loving Emma.

Doctor visit today

A few days ago Emma broke out with little boils on her shoulder and the back of her little head. She skipped physical therapy yesterday, since we were not sue what it was, we didn't want to pass it along to someone.We had to make a trip to the doctor today to have them check her out

First of all she weights 29 lbs now, which means she is really not gaining weight at all now, I guess that is good since they don't want her putting too much on too quickly.

She has a simple skin infection, nothing serious. They gave me some bactroban cream for it, which is an antibacterial medicine. They also gave me some more eye drops since her eyes were matting again.

I am glad about one thing today, they gave me something new to try for her eczema. Its the first time they said "eczema" when talking about her face and shoulders and I was so excited, they normally tell me its just dry skin. They gave us elidel cream. I hope it works for her. Some people say its great, but I hear mixed reviews. It does say on the sheet that comes with it that "long term safety of this medicine is unknown, rares cases of cancer....blah blah." Cancer! That is freaky, but I am sure we won't have to use it forever and ever. It will be nice to get her face all pretty and not all ready and flaky and icky.

We had a fun trip on the bus, Emma slept the entire time, and at the doctor, and all the way home. She is over eating and of course now that we are home she is wide awake. Little stinker.

Just an update and some pics

Emma at Ella's potty party, sleeping with her sunglasses on

Ella and Emma's Nurse DeLene, DeLene is very special to our family

Ella's big girl cake

Mommy and Daddy

Ella looking pretty

Our family, Derek did NOT want to be in this picture he is camera shy

Mommy and Daddy again

Not much to update really, all is going wonderfully. I just wanted to post some pics of the family. Emma's hands continue to stay open and much more loose than before. Its truly a miracle. We prayed hard for a miracle and God has answered. I just can't stop kissing her sweet OPEN baby hands.

Emma's physical therapist Amy is on bedrest so we will be seeing Lucy on Thursday for therapy. Amy assures me that Lucy is very good at what she does. We will miss Amy though, her blood pressure was high so the doctor said to stay in bed until her baby boy comes. Only 19 more days or so until her due date, and I think by the end of this week he will be here. We are so excited for her but will miss her so much while she is on maternity leave. She is very caring and sweet towards Emma, I know she is going to make a great mom. Everyone say a prayer for her that all goes well with her delivery. She is very dear to our family.

Emma's twin sister Ella had her potty party the other day, she is offically potty trained now! I am so excited about that. Emma just slept through the whole party, I guess potty stuff just doesn't excite her very much.

Last night while our nurse was here she wiped Emma's nose and Emma just screamed at her, I don't think she wanted her face wiped. I think its funny that she is getting such an attitude. She kept putting her foot up on her teddy bear to sleep last night, we would move it and a few mins later we would look and she would have her leg propped back up there on that bear. She just wanted to get comfy I guess.

Well that is it for now, not a big exciting update but I figured I better post something, I am really trying to post but its hard when there isn't much going on to talk about.

Pictures and Video of Emma's hands!!

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.

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.