Jan 30 2010

What an ice storm we got on Thur and Friday! We spent all day Friday without power, and just as we were leaving to go Grandmother's house the power company drove up and said it would only take 20 more mins! We were so glad to get our heat back on and power for all of Emma's equipment. We got about an inch of ice followed by 7 inches of snow. So no church for Emma tomorrow, because it will be too messy for me to walk her, but the plan is for me to walk in the snow and go, we just started a great series and I don't want to miss any of it.

Our praying mantis died this week too, she was old. The kids buried her and made a really neat little grave in the backyard

Posted above for your amusement are some of the pics I took around the neighborhood, plus one of the little grave we made for the mantis. The tree that is on the ground, is at the kids school.

5 years ago today, we had Emma baptized. While I have talked before on this subject, I can't let today go without mentioning it again. Never grew up believing in infant baptism, but just felt after almost losing her the night before that it was the right thing to do. Notice how yesterday I did not post a remembrance of almost losing her the first time she flatlined on us at home, Jan 26, 2005. Its because I no longer want to dwell on the sadness that night put into my heart, or the fear that it caused me.

Jan 27, 2005 when they sprinkled Emma's head with water and baptized her in the name of the Father, the son, and the Holy Spirit, it not only washed her sin (not that she really had any she was so young and innocent, the only sin she had was being human and Jesus already wiped that sin way for her on the cross) it washed that part of her life away, the part of fear. I had given her to God in prayer and with a sacrament. I prayed God would take her, he was her child, not mine and only he could heal her. Which he did! Hallelujah!! She may not be like other children, but he healed her, and in turn he healed me too.

That day I basically had her baptized not because of her sin, like I said she was a sinless child, but as a sign to God that I would raise her to be Christ like in her ways, and to teach her of him. I have tried hard to live up to that, we don't always go to church, sometimes its physically impossible for us to walk, in the snow or cold, but I talk to her every day about God, we read our bible. We have been so lucky to find a church that works for us, Emma loves her music, and her friends. She sits and listens, I don't know how much she actually understands, we will never know. But I always kiss her and am all smiles at church, because I know that God is sending his love to her, and that she might not understand the sermon that day, maybe she does? But God is sending her a special sermon in her heart that is only known to her and him. He is always with her.

Some people ask me how I can believe in God, especially after having a child that has something "wrong" with them. My belief of him has been in me my whole life,from an early age I knew God was real and I was his faithful servant, but if I ever needed proof I just have to look into those big brown eyes of Emma's and know he is real and he is good. He has blessed me with so many answered prayers and miracles in regards to Emma, how could I not believe? Her being here is proof in itself. I am so undeserving of his love and answered prayers, but he has always been there with me and he is always with her. He is with all of us, we just have to open our eyes and see him, and open our hearts to receive him.

Emma went to see her lung doctor yesterday for a check up. He changed some settings on her vent and ordered a new kind of trach for her. The settings for those of you who understand vent talk were changed from a breath rate of 20 to 18 and tidal volume was changed from 130 to 145. This was done because she has grown some and it needs to be changed as you grow.

He also ordered a bivona trach for her, which is a different brand than what we used before. It has a cuff inside of it, so we can inflate it when she has an air leak, she has had a big leak for sometime now, and while its posed no problem, its quite loud and annoying and could be a problem in the future so we are fixing it.

The trip to Children's hospital to see him went well, we rode the bus and Emma liked it. His office is now all the way up on the 9th floor in the new OU Physican's center and its a very nice new building. Emma liked looking out the windows, we could see almost all the way to our house! I did not like it much, it made my vertigo go wacky in combination with riding the elevator up.

Please say a prayer for us to avoid power outages. Thursday is going to bring a very bad winter storm to our area. It could be worse than the ice storm we had way back in Dec07 where we lost power for a week and had to stay at Emma's Grandmother's house. Not a fun time for anyone involved. This storm looks bad, and we ask that you pray for the safety of all our friends that will be in its path, may they all stay safe and warm.


Ella and Derek were sick from school today, they have colds. We are hoping they don't pass them on to Miss Emma.
That's the update for now folks. Emma sends her love to each and every one of you and appreciates you taking the time to learn about her.

Update Jan 9, 2010

Just a little update to let everyone know that Emma is doing very well since coming home from the hospital. No more bleeding, if that happens again its back to the hospital, but no reason to think it would since she is healing up from those ulcers nicely thanks to her medicine and new formula.

We haven't been able to get to church lately and will probably miss tomorrow too. Its just too cold to walk, we had wind chills well below zero this week. I sure am itching to get her back there though to see all our church friends. Everyone was so helpful while she was in the hospital.

Today cousin Killian came to play. He is a bit grumpy because he is teething. But he loved laying next to Emma and he finally dozed of while I was holding him for a short little nap. Above are some pictures I thought you might like of him and Emma and some cute ones of just him. He is so very sweet.

For those who are curious Derek and Ella are doing great too. Derek is enjoying cub scouts and will be working on his pine wood derby car soon. Ella has another tooth that is loose. The first one she lost is already growing back in, she is so proud of her "big people tooth".

Have a blessed Sunday tomorrow, will update again soon.

Wishing all our friends and family a very happy New Year. May the new year bring you many blessings, and much happiness! --Emma and Mommy

We had a great Christmas. The kids got lots of gifts. Derek's favorite is his guitar and skateboard. Ella likes her easy bake oven and Emma loves her new mp3 player and sound machine.

On Christmas Eve we got about a foot of snow, a rare amount for us. We built snowmen today. Here are the pics, and I will update more in a bit its dinner time but Grandpa and Grandma really wanted me to get the pictures up. Pics are from the snowstorm, the snowmen, the kids kissing their snowmen which was Derek's silly idea, Christmas random shots and one big bubble pic of Emma, she sure had a lot of bubbles in her mouth! Love to you all.

There's no place like home...

Home at last! I am so happy we finally have Emma home. We got home around 5 last night. Emma slept very well in her very own bed last night and loved the fact that no nurses can in the room every 2 hours!!!

The problem was that she had 5 ulcers in her stomach that bled. We had no idea until she started passing blood in her diaper that she had ulcers. Her electrolites and hemoglobin were way out of whack when she got there and they dropped a few times during the trip too. She had 3 blood transfusions , lots of thanks to the 2 A positive and one A neg. donors that saved my baby's life!

She had 2 failed attempts at starting a picc line for the many blood draws she needed on a daily basis, apparently she has flat veins that round caths don't like to go in! So she had a central line put in.

She had 2 endoscopies and a colonoscopy. They took some cells during the tests and think she has a problem with her milk she got in her feeding tube, she apparently has a allergy to the type of protein in it and that is what caused the ulcers. Her seizure medicine she spent years on also causes ulcers so we are off that now, and on no seizure meds as of yet, they want to see if she she managable off medicine. So far so good.

She is on a new formula and 2 medicines and will be pretty much forever I guess. Prevacid for acid control and Carafate to coat her stomach.

We did a lot of praying that we would be home for Christmas and I am beyond excited to have her well and home now. This was the sickest she has ever been in her life. They said we can pretty close to losing her those first few days, due to her hemoglobin dropping so low. But the little miracle she is, with all the courage and strength she carries around, she showed those doctors a thing or two and has more or less made a full recovery!

Thanks for all the prayers you have sent, and to our family who helped us during our stay. Thanks goes out to those from church her brought food, and visited and prayed for us. That love really helped keep our spirits up. There isn't a thank you card big enough for all that was done, and we are so very grateful and humbled by the outpouring of compassion. THANK YOU!!!!

Update

Sorry I didnt update as I said I would,yesterday and the day before were kind of busy and I didn't make it down to use the computer. Today Dad is here and I have the netbook here for a while.

Still bleeding, and still no new answers. They discountined her seizure medicine because it can cause ulcers, maybe that is our answer but they don't think so for whatever reason.

Friday we got an ultrasound of the kidneys done. They look fine, as do the spleen and liver, which they had tested earlier in the week.

Her heartrate was high again yesterday, but labs all look good. They wondered if she was in pain, but she seemed very content so I don't think she was. So today we are doing a CT of tummy and intestines (I think both spots), we are just waiting for them to take her down and to give her some barium

Tomorrow they will be doing a RBC nuclear scan or Red blood cell scan. If her bleed is big enough it will show us where its at, but both the doctor and the radiologist think her bleed is small, so doubt it will show much. The next step will be to scope her again down the mouth and check to see if the ulcers they found her tummy or bleeding, if not they will go into the intestine to look, which is a surgical thing. We have wanted this done all week and frustrations are high because every day she has bloody diapers and everyday we get told to wait and see if the medicine they have coating her stomach works.

Please pray we will get answers soon so we can go home.

A very sick girl...

Emma is at Children's hospital in Oklahoma City. We have been here since Saturday. She has been admitted with a GI bleed, which is something very new for us. A lot to update on what has happened the last few days, will have to try to be as simple as possible.

We were admitted following a bloody diaper at home, she has had several since then. Over the last few days she has had 2 blood transfusions, an endoscopy and a colonoscopy, which are fancy names to say she has been looked at down her mouth and up her bottom. They found 5 ulcers in her stomach, which were not actively bleeding. They have medicated her to see if that helps, but today and yesterday she had bloody diapers again, so there is a chance some of the ulcers are in her intestines and they will have to go in and operate. As of now its all "wait and see if she has bloody stools some more" which is really frustrating to say the least. They did biopsies during the scopes but the results are not back yet, they don't expect them to show anything but they are done as a precaution

She had a central line placed yesterday because they are taking blood ever 6-8 hours and need to have good access. They tried to start a PICC line two times and could not. You can google those terms, if I just completely lost you. I am sorry I am just in hospital mode language right now.

We just want our girl well, if she could be home in time for Christmas that would also be great. No children under 12 can enter the hospital due to Swine Flu fears, so Ella and Derek have not seen their sis all week and I hate to think of them not being with her on Christmas, let alone how I will split my time between here and home.

I just found a wonderful room called the "Ronald McDonald Family room" here in the hospital where I have access to a computer so I will try to update as much as possible. I plan on daily updates, more if possible.

Our Church family has been great, with visits to see her the last 3 days and a group of ladies that will be bringing meals by to Daddy and the other 2 kiddos. Its nice to have them there for support, along with our family.

Immediate pray needs are 1. Make the bleeding stop 2. Let us get home for Christmas and 3. That her blood work and electrolites stay where they need to be so we can avoid more transfusions.

Will update as soon as we have some more answers.

Nov 13, 2009

Parent Teacher conference for Derek and Ella was this morning. Overall, things went well. Apparently I have 2 smart kids, well mannaered, but one is kind of messy, that would be Derek. He gets that from me, I was the same way as a kid. I was hoping my ability to keep house neat as a grown up and suchwould rub off on him, but apparently not.

Since Emma doesn't go to school, I had a confrence with myself. It went something like this. TeacherMe--Emma is doing well with her stretching MommyMe--That is great to hear! TeacherMe--yes but she is so tight on that right side in her arm and her knees need work MommyMe--Oh ok I will work on that, since you guys only work an hour or hour and half a day, I am sure I can find time in my super busy schedule to work in more time. HA HA.

Actually, to update Emma is doing very well, she does tend to stay pretty tight with her right arm, and her knees, but her hips are still doing great since surgery. She learned a new skill, sometimes but not all of the time, when I am kissing her cheek she will turn her head and point her mouth at me and kiss me back, she doesn't puker up just sticks her mouth by mine. Its slobbery and icky wet but its a very great kiss, one of the best kisses ever. She still doesn't make a lot of purposeful movement on her own, and that is one thing she does do so its excites me a great deal. Of course when I want to have her show someone like Nanny or Mimi she won't do it! But dad has seen it, and if I ask really nicely she will usually do it, I will try to make video of it. She spends her days watching tv, listening to music, or having Mommy move her around and read to her. I just got her a new book at the book fair from school, its called "Emma's Very Busy Week" it looks cute.

So no big update, but wanted to post something so I could attach some new pictures of Emma, and a few of Ella I took and love. They are both growing so big, I can't believe they are 5!

Random pics

Some random pics as of late. Emma on her birthday sleeping, the cake Ella made them, Ella and Emma at the school play ground, and finally my new fave pic of Ella. She is holding cousin Killian and made him go to sleep, what a little Momma. Don't forget to see the pics bigger all you have to do is click one!

Finally an update and Halloween pics

Please forgive my neglect of the blog recently. Not much in the blogging mood, too busy enjoying life, which has been very good to us recently. Emma is doing fabulous. No sicky icky germs as of yet, even though a few weeks ago the entire house was sick. All the kids have had the seasonal flu shots as well as the first dose of the h1n1 vaccine. No tears at all either time for any of my 3 big kids, I was so proud.

We are greatly looking forward to Thanksgiving this year, if plans go right Emma's Aunt Adam will be in town to visit. He as you know is in the Army and is stationed in Arizona right now, but will be making a trip to Afghanistan early next year as it stands right now, this after just getting back from Iraq earlier this year.

We love fall time anyway, will be looking to change the blog layout soon, so that we look more fall like.

Halloween went well. We went to Fall Fest at our wonderful church. Derek was a skeleton, Ella dressed up like Hannah Montana/Rock star and Emma wore a cute little pair of pumpkin pants and a shirt with a little girl witch on it that said "too cute to scare" it was cute. We got lots of candy, got to have fun and see our friends, and learn about Jesus.

I will be posting another post shortly with some random pics of the kids. My laptop was not working very well the last month or so, but thanks to Darren it is now, and I can post pics again!

God Bless all our dear friends, we hope fall is bringing good things to you and yours.

Birthday, flu shots, and being sick...

Derek, Ella and me (Mommy not Emma) have been passing around some sort of sick colds or something for about the last 2 weeks, which is why no updates for a while. Mommy was just too tired! Everyone is doing better, but Derek stayed home from school today. He went on a cubscout camp out this weekend, because he was feeling better and got to feeling worse from sleeping out in a cold tent. He also ran into a tree and scraped up his face pretty bad. Thank God Emma has not gotten super sick, but has been a tad bit gunkier.

Last Thur we all got seasonal flu shots, Emma did great. Ella ran a little bit and we had to chase her down and hug her tight for her shot, but in the end she never did cry over it. Derek sat down and took his shot like a man. Didn't even say ouch or anything.

Friday the girls turned 5! Can you believe it? My little miracles made it to 5 years old, there were so many days back in the NICU that 5 years seemed impossible. I am so proud of them both. They got some great gifts and love them all.

Since the first week of Oct, I have been fighting nerve pain/palsy in my left hand so typing is no fun to me. Imagine your hand feeling like its constantly asleep and when you use it, its all pins and needles. I am doing home therapy on it and trying to rest it, hopefully it will heal on its on.

Please everyone pray for Emma's Aunt Lisa aka Mimi. She was in the ER last night and her blood work came back saying gallbladder problems, she is set for an ultrasound in about 2 hours to figure out what needs to be done and how bad it is. We are hoping she doesn't have to have surgery, and praying her pain stops soon. Will update you all as I can on that.

Bless you all for hanging tight and still reading our blog, I know updates have been few and far between the last few months, I will try to change that soon.

September 22, 2009

Things have been busy recently so I have not had a chance to update. All good things happening so no worries.

Yesterday Emma got her last 3 immunizations. She did well, only cried 2 little tears. Ella went with us and she held Emma's little fisted hand and told her not to be scared, it was so cute. Afterwards we went to the dollar tree, where Emma got a stuffed doggie for her bravery and Ella got candy for her kindness to her sister.

We went to church this last sunday, it was the first time in I don't know how long. No rain and it wasn't hot so we went. It was nice to get back, and I am hoping we continue to go. But with swine flu being a big scare I am really trying to keep Emma away from crowds, so we will see. Swine flu, what a topic. It really gets me worried. Most of the children who have died from it have under lying problems like lung issues or neurological problems. Sounds a bit like Emma doesn't it? So of course that makes me worry for her. I know that Ella and Derek's teachers are doing all they can to keep the kids well, they have hand gel to use and have been teaching how to cough or sneeze into the crook of your arm and not all over your hands or out in the air. I am still iffy on the shots, I worry they might not be safe. But we will all be getting our regular flu shot on Oct 15.

Derek has joined cubscouts. He is going to the Wichita Moutains for a hike this weekend. I wish we were going with him, but Darren has to work. They will be going to the top of Mt Scott (you can google that if you aren't from OK) which is something I did when I was around Derek's age. I spent quite a bit of time down in that area, since we grew up down there and its a beautiful place. I hope he has fun.

That's the update for now. I am going to work on the blog some, I have been wanting to make a page for some time, where you can click and just get a short summary of Emma's life and what her issues are and read about how awesome she is. That way new people to the blog don't have to read all the old posts to catch up.

Prayers for a friend

To protect my friend's privacy I will not share who they are or give details (I don't even have details so please don't ask!), but I found something out this morning that I can not let go, it is weighting so heavily on my heart. I have to ask that everyone prays for this family. Their daughter is disabled, and this last week she was sexually assaulted. As you can imagine they are so very upset, scared, lost, and hurting for their daughter. Please pray that God will help them during painful time. They are wonderful friends to Emma and myself and to know they are hurting, well its just so heartbreaking.

September 11th

Anyone that knows me in person, knows that this Momma has a very soft spot for Patriot Day. Long story short, I have always been proud of my country, but 9-11-01 was a very scary day for me, never in my life up until that point have I ever been so scared or prayed so hard for people I had never even met. So scared in fact it sent me into labor with Derek, who was stubborn and spent the next 36 hours taking his time!

Remember today is not about buildings burning or planes crashing. Its not about hate and war and getting even. Its about remembering those who lost their lives. 2,966 people died that day, to many of us that is just some number we hear and remember seeing the day unfold on tv. But to 2,966 families it is the day they lost an important person in their lives. Its not just a number. It is life. Life lost due to something that I personally will never be able to forget. I still cry to this day, thinking of how I wept and cried and begged God to save people, to save all of us, to save the world. It felt like Armageddon to me that day, and 36 hours later my son came into this world and like an angel sent straight from heaven, filled my world with goodness again. Let us pray that those 2,966 families can find goodness again. Let us never forget what we lost that day.

Help someone on 9/9/09

Please help our friends raise money for Cystic Fibrosis! Nathan is looking for 99 people to donate $9 each since today is 9/9/09. If you can help please do, and tell your friends! http://cfhusband.blogspot.com/2009/09/9.html There is a link to his blog post it will tell you how you can help! You will have to copy and paste it, for some reason blogger will not allow me to post it as a clickable link (I still need to figure out why!?)

Sept 2 2009

Derek and Ella are still home from school. Doing better today, so far. Praying that holds through for the rest of the day. Still coughing but no fever yet since last night so hopefully that means school tomorrow. They are mad that I have them laying down all day. I even rented them a movie and they still find ways to complain. If they don't go back to school tomorrow, I promise I will go in their place!!

Emma's not sick so far, and I ask that prayers be said that remains true. I can't imagine her having what they have. They have been miserable. Fever is so rough on emma too. But so far so good, we have tried to keep Derek and Ella off of her and out of her face and I have used a whole can of lysol spray and we wash our hands like crazy.

Above are the praying mantis pics I promised. We found her a while back, the kids named her Gummy bear. She is getting to big for the container I have for her, so hopefully today or tomorrow I can get her something a bit more comfortable to live in.

I have been having fun with my new camera and hopefully will be posting more photos for you all to see, I got some great ones of Ella the other day, just need some of Emma to post along with them.

Sept 1 2009

Sorry its been so long since we updated. We have been busy! Our dear friend Celeste got married August 16 and Ella was the flower girl, Mommy was a bridesmaid. Celeste is the daughter of my best friend Shevaun who died of lung cancer March 1 2005. It was a beautiful wedding, although very hot, since the air didn't seem to work in the room they were married in at the state capitol.

Ella and Derek have started school. We are keeping Emma home to avoid germs, and its so nice to have alone time with her in the morning, for physical therapy and playing.I guess you could say she is homeschooled, although not in a typcial ABC and 123 kind of way, since she doesn't learn like that. Ella is in pre-k and only goes half day. Derek is in 2nd and goes all day of course.

Currently Ella and Derek are sick with nasty colds and fever. Ella has missed two days of school and Derek one so far. We are hoping they can go back tomorrow but they both sprung fevers again this afternoon so we will see.

We were donated a camera by a new friend so more pictures to come. Its a very nice camera, a Pentax x70 for those who know cameras. I am forever grateful to him for sending it. Right now my laptop is acting up and its our primary computer for picture storage, so it might be a bit until I get it up and running, maybe I can talk Darren into letting me put stuff on his.

Prayers go out to our friends the Lockwoods and the people in the areas around them. Hurricane Jimena is heading there way and will no doubt bring great flooding to their area.

I did attach 2 pics of Ella as Celeste's flower girl. They are pictures someone else took and I kind of "borrowed" them from their facebook page.

I will update again soon, have some pics of our new pet. Another praying mantis! Remember our two last year? This year we got ours as a very young mantis and it has motled for us a few times. Her name is Gummy Bear.