March of Dimes

We are raising money again this year for the March of Dimes. Our walk is in 33 days and we are still in need of more donations. Can you help? Even the smallest amount will help us. As you all know, this is something that is so close to my heart as I will be walking in honor of Emma and Ella who were born 9 weeks early. Again I walk with a heavy heart in memory of my nephew Gabriel, who went to heaven before we even got to play with him, on June 9, 2004. Please help if you can or pass our link along. God Bless!

Easter 2010

"For this reason the Father loves Me, because I lay down My life that I may take it again. "No one has taken it away from Me, but I lay it down on My own initiative. I have authority to lay it down, and I have authority to take it up again. This commandment I received from My Father." --John 10:17-18

Happy Easter everyone!

Church was wonderful today, the kids had tons of fun and got lots of candy filled eggs and learned about Jesus! We then came home to hunt some eggs of our own. Ham is in the oven and dinner will be awesome, it smells so good.

We are so blessed with our friends from church. I won't get into details, but we were given something very special from another church goer today, something that will help us, as we go through a rough patch in our financial life right now. Thanks be to God, his work is being done through his people.

Above are some pictures, Ella was pouting during much of the egg hunting, Emma got an egg she wanted! I did manage to snap a few that were worth sharing.

Wishing everyone a wonderful Easter, filled with love and family as we honor the one who who makes everything possible...

March 20, 2010

Ella has been a very busy girl lately. She went a few night ago to the ER with an ear infection. Its funny having her in there and not Emma for a change. She was really brave. She is doing better now, though she still coughs a bunch at night.

And the best news to share...Ella's wiggly tooth finally come out this morning! No more being jealous of Emma. This is Ella's 2nd tooth to lose and and she is excited about the tooth fairy coming.

It is the first day of spring, and despite 70 deg. temps yesterday we woke up to snow and wind. We have maybe 2 inches of snow so far and are supposed to get 4 to 8. This sure has been on crazy year for snow. Hoping tomorrow we can get out and make a snowman. Looks like just Mom for church tomorrow, no way Emma's wheelchair will go in the snow, and I don't want Ella and Derek all wet and icky when we get there. Hopefully they will still have church, and not cancel on us.

That is all for now. Emma is doing great, just hanging out with her brother and sister, enjoying the end of spring break and watching the snowfall from a nice warm house.

The toothfairy is coming! YOOPIE!

Emma is getting another tooth fairy visit tonight! 6 total, as you remember back on May 25, 2008 she lost 5 in one day! Her tongue pushes on her teeth so they get super lose. This one feel out when I was brushing her with a mouth swab. She didn't even notice.

Ella is kind of mad, she has had a "wiggler" for about a month, and its still not out. Of course she doesn't like to wiggle it much either.

Not much else going on. Up coming dr visit on March 18. Its for nutrition clinic to follow up since they changed her food during the whole ulcer problem. I think it will be fine, and we will have her weighted I imagine so it will be good to see how much she has grown since Christmas time.

I went to a women's retreat for Church over night last night, and let me tell you, Mommy needed that! It was a nice break but I sure missed Emma, Ella and Derek.

God Bless for now, time to go tuck this tooth safely under Emma's pillow.

As a dear friend pointed out, I should really update this blog! Sorry for the lack of writing but not much has been going on. Emma is doing the same as always...wonderful! She has just got over the little cold she has and is hoping that the snow that is falling today will melt really well so she can get pushed to church on Sunday. I think it will be fine to go on Sunday, most of the sidewalks are snow free. I will be so glad when winter is over.

Waiting on a call from one of Emma's doctors, wanted to get her in for some xrays. I have been noticing the curve in her spine she was getting is more curvy so I think its time to do something about it. Its very common for children in wheelchairs and who can't move around well to get scoliosis. We just want to make sure we keep it in check.

Here are a few recent photos of the girls and even one of me (in case my readers forgot what I look like)! None of Derek, he still runs when I pull the camera out or pop up the webcam. Also included is one of Emma's new doll. She got it for Christmas from Uncle Jay and Aunt Kim and I put a trach in its neck so it will look just like Emma, the dolls name is Ava.

Just a little update, not much going on around here. Sunday brought a return to church for Emma since all the snow had melted and her vent battery was replaced. 2 weeks ago I had her all ready to go out the door when we realized her vent battery was completely dead and broken! They replaced it quickly but she still missed.

Sunday also brought super bowl Sunday. We aren't big football fans in our house, unless its the OU Sooners, but Emma sat and watched most of the game while everyone else in the house did other things. Her eyes tell me it was a good game.

Emma is doing pretty good with her new brand and size of trach tube. She does seem to have quite a bit more secretions we have to suction out, but I am not sure if that is due to the tube itself, or the fact that brother and sister just got done having colds, so maybe she has some cold symptoms too.

Ella has been up sized out of her toddler bed and into a twin size bed. A move we really tried to wait until last min. to make since the girls share a room. Poor little Ella's legs finally got to big for her little "baby" bed and she got a real "big girl" bed. Their beds are in an L shape in their room, so we have some floor space left, its not as crowded as I feared it would be but its still a big change. Ella picked out a striped bedset that is really bright and she loves it. I told her she could have any one at walmart and she picked that over tinkerbell or barbie, what a big girl!

It is really cold here and we are longing for spring and park visits, Emma wants to wear her famous hippo croc shoes again and play outside. We had some snow yesterday but nothing stuck, thankfully.

That's the update, see I told you there wasn't too much going on around here.

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.