Update

Emma went to therapy yesterday. They fitted her for some ankle/leg splints She has been having issues with one of her ankles kind of turning out a little bit. Plus in her stander she isn't able to put weight on them without them pretty much collapsing. I hope these splints help. They are going to be pretty. Purple and pink with flowers on them. These brand of splints are the prettiest I have seen. They should probably be there not the next time we go but the time after that, he said about 3 to 4 weeks and we got back in 4.

Emma also did her reg. workout with Amy and did good as always. She ate a lollipop and got all sticky.

We put up our Christmas tree, its very pretty. I think Emma likes the candy canes on it, they are plastic but look like they are made of glass. She must think they are real, she loves sucking on real ones. Ok so she doesn't really suck on them but she does taste them in her mouth.

We lost power for an hour the other night, it was very interesting being in the dark and trying to find the vent battery and get it all plugged in. We are expecting a big ice storm on Sunday and Monday, I hope we don't lose power from that, it could be days if we do. In that case we have to call and get Emma put into the hospital, unless of course we can find a friend or family who has power. Good thing is my Mom and Sister live spread out of town so chances are someone will have power. I am consider buying an indoor generator, its like a big battery really, but they dont last forever either and they are expensive.

I guess that is the update for today. Not much to talk about really, but I am trying to make a point of keeping this blog updated, I know many of you including family get your news from here.

Some More Christmas Pics

Here are some more pics I had to put up just so Grandpa and Grandma could see. They called today and its was so nice to hear from them. They are doing great, some times it stinks they live in KS I know the kids miss them so much and Dad and I do too!
I am not just saying this because I know they will read this, but they have been very wonderful to us, and have been very supportive of all our choices with Emma and that has meant a lot to us. My husband's dad is a great guy and his wife is a real sweetheart.

PS No my hair is not red or brown, it used to be but its back to really blonde now, my mom's camera just changed the color, funking lighting I guess!

Emma saw Santa

Tonight we went to the JD McCarty Center where Emma gets her PT. They had a big party for Christmas and all the kids went and had so much fun. Ella didn't much like Santa. Emma didn't seem to care at all about Santa. She did like the Christmas Music and tried to sing along. It was cute. She loved seeing all her friends, that place is just awesome and they really go all out on Christmas. Here are a few pics.


EMMA


ELLA



DEREK


Oh and one more thing. Emma and Ella both got their ears pierced this weekend. Ella has pink earrings and Emma's are diamonds. Neither girl cried or even said OUCH! I was so proud and they look so pretty

Family Doctor Day

Emma, Ella and Derek went to the doctor for check ups today. What a busy day, and Mommy is very tired. Daddy is too. It took 2 hours at the actual doctors office, to wait, be seen, get shots, and leave. Plus the hour ride on the bus there and back.

Everyone got shots. The girls got Hep A and flu shots and Derek had to get his chicken pox booster and the flu shot. Emma went first and as always did not cry, she just made an ugly face and jumped a litte. Next came Ella. Guess what? She didn't cry either! First time ever she didn't make a sound during a shot, she didn't even say OUCH! I was so proud I almost cried. Derek went last and he cried. Just a little, but his shots were in his arm the girls got leg shots, so I am sure arm shots just hurt more. He did pretty good and only cried for a few seconds.

The big news of the day is that Emma is no longer the big twin. She is the little twin! Ella finally caught up with her. Emma is 27 lbs 3 oz (she has lost weight, will get the nutrionalist to help look at that) and Ella is 28 lbs 12 oz. They measured Emma in parts since we can't get her straight in the legs and she is 34 inches, Ella is 38.5 inches tall. My little Ella is getting to be so big! Derek is 4 foot 3/4 inch tall and 57 lbs, very tall and very big for his age, in case you wondered.

Emma's doctor gave her some new medicine to try on the rash on her arm, we thought was eczema. He called it something else and I forgot what it was, but the important thing is we got new meds to try. Its called Lachydrin 12%. We will still use the elidel on her face, this stuff is just too harsh for the face, and we are pretty sure it is eczema on her face anyway.

He refered me to an eye doctor for her icky eyes, which looked horrible today, and I am happy they did so he could see them at their worse. He also told me about a dentist to get her seen at. Its just that time, plus she only has like 6 teeth and they are really icky because she drools all over them and the enamel is bad.

All in all it was a good but very long day. Emma brought her Homer Simpson doll with her and hugged it super tight right before her shot. She liked playing I am a little teapot while we waited. Only problem is she has two handles, not a handle and a spout, her arms are always in the "handle' position! LOL. I stretched her good and we made a handle. Then we did patty cake. She loves that one too.

Here is an update for everyone. Emma went to thearpy today. She did pretty good. She really worked on sitting up with some help and even lifted her head up staight a few times. I was very proud of her. I told her she looked like her sissy Ella when she set up like that.

Amy pointed out to me today that Emma is getting a slight curve to her spine, which is very common in kids like Emma who aren't really active and spend a lot of time in chairs and beds. Its still not a GOOD thing though. We will keep an eye on it, its pretty slight right now and we will bring it to her doctors attention and see what he wants to do about it, probably noting for now but just to watch it. Later on if it gets worse (which those things tend to do) we can brace her or possible do surgery. Having a big curve in your spine can actually be really bad, and put pressure on your lungs and it can be very serious if not deadly. But were aren't there yet so don't worry. We have lots of options if it starts getting worse.

We are working on getting her a brace for her hips because her legs are so frogged legged that she can barely fit in her bed anymore and getting her in clothes or in the bathtub is a nightmare. We won't see Amy in 2 weeks because of thanksgiving but when we do go back we will get the ball rolling. She has great range compared to what she used to have, you can really move her legs much better, thank God for that because it is a bit easier to dress her than it used to be. But her hips are weak and they don't want to stay together. Hopefully a brace will help.

Gosh I can't believe its almost Thanksgiving! We are also going to do some splints/braces for her ankles. Her right one tends to make her foot stick out at an angle, and the left one is fairly weak too so I hope we can get something to work for that.

It is a very pretty day outside and Emma liked the sunshine on her face. She sucked on a red dum dum lollipop today at therapy, well she didn't really suck but she tasted. I put it in her mouth and left it sticking out and one of the ladies at therapy said "Kids arent supposed to walk around with those in their mouth" and I told her "Well Emma isn't walking she is rolling! Besides she can't choke like most kids she has a trach!"

Happy Early Halloween!

I couldn't wait until Halloween to share all these pictures, they are all just too cute. The kids are going trick or treating in just a few days and they can't wait. As you can see from the pictures Emma is going to be a bride, Ella is going to be Dora the Explorer and Derek is going to be a black Knight. He doesn't have his dark sweats on in the picture but you can get the idea anyway.

We did our pumpkins. We have Homer Simpson, in honor of Emma's boyfriend Daniel aka Homer, Darth Maul from Star Wars because that is what Derek picked, and a little pumpkin with a face because Ella wanted her own pumpkin. Emma has a small pumpkin we haven't done anything to yet.

In Honor of a very courageous family

Many months ago we asked you to pray for our 'friend' Joel. He sadly did not make it and left this world in Jan. His parents have a blog and I suggest everyone check it out, their story is so very touching. Even after the doctors declared him brain dead they did not give up the fight to take their son home, they knew he was not gone, like the doctor said. He was still there, his heart was beating. He was alive. His heart finally stopped and he went to be with Jesus in Jan.

Well his family has a video out and I was lucky enough to get a copy. It was the most amazing video, about life I have ever seen. Their family is so full of love for each other and for God that it was just so heartwarming, and I feel blessed to have seen the video, and to be a part of their lives for the 33 minutes the video ran. They talk about the sanctity of life.

I cried, the entire time I watched it. It reminded me so much of the battle we have had with Emma, though ours was not a battle near as long and hard as theirs. It makes me hug her tighter, and I know even more now that her life is worth living, that life is important. Life means something, every life, and we should all fight for our children, and for their right to live it.

I just want to ask everyone to remember them in your prayers, they are always in mine.

Happy Birthday Emma (and Ella too!)

Its so very hard for me to believe that Emma and Ella just turned 3 a few mins ago! My how time has flown. They both seem like very big girls, but to me they will always be my babies. I will never forget the day they were born.

I was laying on the table getting ready for my c-section when it hit me, this was really happening, my girls were finally going to be here! I was so excited and scared all at the same time. It was still 9 weeks to early for them to come. Emma came out first and I had no clue. 10 seconds later they pulled Ella out and I heard her cry. They showed me her over the curtain and she was the tinest thing I had ever seen, so beautiful and perfect. I asked "Did the get the other one out yet" and Daddy said they are working on her. I had no idea Emma had been born first, she was silent. They were breathing for her. About that time they gave me some medicine that made me black out most of the day, but I do remember them showing me Emma all wrapped up on the way to the NICU.

Now when I say blacked out, I wasn't really blacked out. Apparently I was talking and throwing up and asking about the girls, I just have no memory of it. I do remember watching about 10 mins of Nascar that night. I was shocked my husband had remembered to turn it on, I asked him later and he told me I had asked him to put it on, but I don't remember that part at all.

Someone brought me NICU pictures of the girl, not sure if that was the 16th or 17th but the morning of the 17th I walked down and saw them for the first time. They were both so tiny. Ella was 3 lbs and 15 inches long. Emma was also 15 inches long and she weighted 3 lbs 6 oz. They looked like baby monkey's both were laying on their tummys and I remember seeing their skinny little shoulder blades and neither one of them seemed to have a bottom at all, a tiny little diaper was on them, no bigger than a maxi pad. They were hooked up to all kinds of machines, but I never felt scared. I kind of felt at peace next to them. In that warm NICU with the dim lights and all those cozy sleeping babies. I remember hurting from my physical pain, but my heart never hurt for the girls. Maybe because I was a preemie too, but I think it was God sending a sense of peace over me, so I could be there for my girls.

I held Ella about a week or two later. Emma well, I held Emma for the first time, really held her the day after Thanksgiving, the day Ella went home.

Since then of course, Emma has had all kinds of issues and is on her vent, but I thank God that we are blessed to share another birthday with her. The big 3. Ella told me before she went to bed "Mommy I free." lol. She is free yours old. My babies are free years old, and they are two best princesses in the world.

Nothing to say really

Just a quick update, not much to say really. Emma missed going to therapy and being reunited with Amy, who has been on maternity leave. I have been fighting 2 kidney stones so there was no way I could take her, Mommy was in too much pain.

She is doing wonderfully, I can't believe that in 3 days her and Ella will be 3 years old. They have come a very long way in their short little lives. Especially Emma and I am so very proud of her.

Check back on the 16th should have a big birthday post for her and Ella, plus if my kidney stones go away I will be going to the pumpkin patch at Derek's school so I might talk a bit about that.

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.