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.