8-24-2010

Wow its been a long time since I updated here. Not much going on with Emma she is just hanging out enjoying life. Derek and Ella started school, Derek is in 3rd grade this year and Ella is in all day Kindergarten. That means its just me and Emma all day long! All the fun stuff we can do without interruption now. I am researching things to hopefully start music therapy with her soon, she loves music and I figured it would be a good way for her to learn things. I will be homeschooling her so I figure the more things I can do with her the better. Here are two pictures I took of Emma yesterday, hope you enjoy them. I will try to update more as we home school and look for new ideas on things to do with Emma, if anyone has any therapy tips or ideas for me let me know! She can't really use a pencil or talk but she hears well and learns though touch I think, and of course we are working with her physical therapy and trying to keep her muscles as lose as we can. She likes to get her massages and work out every day with me, its fun for me too!

July 10, 2010

Not much going on around here. God has blessed us with a very uneventful year with Emma so far, which is good considering the way last year went out (the ulcer hospital stay).

Emma got a afghan today from heartmadeblessings.org it was requested by my sister, Lisa. I love this program and thought I would share that link with all of you. Their site says: Heartmade Blessings is a world-wide group of volunteers dedicated to providing hand-crafted items to those people suffering a loss, tragedy, or going through a rough time that need to be reminded of the simple fact that people care.
Heartmade Blessings come from all the wonderful people who donate squares for afghans and bearghans. They are also made possible through the efforts of the warm, caring people who donate their time in assembling and organizing the distribution of these items to those in need. We truly believe these people are nothing short of a "blessing" themselves.

So if you know someone who needs a little comfort check out their page, and if you are crafty and can help make afghan squares please check out how to volunteer your time. Its a great group. We have sent afghans to our friend Jaye and to Emma's boyfriend Daniel before he passed away. We have been lucky to get this beautiful one today and a bearghan for her when she was little.

The summer has been rainy and hot here so not many out door things going on for Emma, tomorrow we will be walking to church, she hasn't been in a while due to various reasons I have had to leave her at home, I am sure she will have to much fun getting back.

June 7 2010

Finally some new pics to post! And a quick update. We didnt make it to our March of Dimes walk back in May. Rest assured your donations did, but we stayed home. It rained a lot and they moved the walk inside to a small gym, with a DJ and music and lots of noise and people. We really worried it might set off Emma's seizures so we did not go. Not to mention we would have had to take the bus in the rain way across town and risk getting her vent wet.

She is doing great! No seizures, no icky sicky's lately. Just hanging out with brother and sister for the summer.

Yesterday we went to cousin Killian's first birthday party. He turns 1 tomorrow. That's where are pictures are from. I had to include a few of him on the blog, because he is adorable! It was a very nice party and we all had a great time.

That's the update for now, nothing earth shattering to tell just enjoying life.

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.