Monday, December 10, 2012
Also quick prayer request. We are asking everyone to pray for our friend Tricia. She was on the list to get another pair of donated lungs do to her becoming ill and rejecting the ones she got a few years ago, she got sick and they had to take her off the list. Thur she goes back to the dr and they are praying they put her back on the list to get new lungs. Please join us in prayer that they place her on the list and that her wait isn't too long. You can learn more about her at : www.cfhusband.blogspot.com
Posted by LJR at 9:12 PM
Tuesday, October 16, 2012
Posted by LJR at 9:14 AM
Today they were on the Freedom 43 local news. I made a really bad copy using webcam pointing at the tv, they shared the above picture, the audio is the important part anyway. Thought I would share. http://youtu.be/MFH8WVo6U-s that is the link to see it on youtube. *edit I just realized the new background has links in a really light color, just hover over the blank spot before "that is the link to see..." and it will kind of show up for you to click. Sorry need to do some editing in the template/code.
Posted by LJR at 9:02 AM
Monday, October 08, 2012
Can you believe Emma and Ella will be 8 on the 16th? It just seems like yesterday they were tiny little furry monkey looking babies in the NICU.
Have a big week planned. Its fall break Wed-Fri. On Thur we are going to Build a Bear in Oklahoma City. We are taking Emma and Ella's cousin Elizabeth with us, she is 17 and is excited to make a bear too, I can't make fun of her though, I am 36 and can't wait! I am lucky I was able to do some surveys and things online and get $125 in gift cards FREE! Oh I love free stuff. Might also eat at the cheesecake factory so we can get some birthday cheesecake.
Then Friday if the rain holds out for an hour or so we are going to get flu shots. Emma always does great with flu shots. Actually all the kiddos do. Derek just got his tetanus booster and was so brave.
Halloween is coming soon, not sure what Emma is going to be, probably a princess. Its so hard to get her something, she can't do hats very well in her wheelchair or anything with wings on the costume. Ella wants to be a vampire, no idea what Derek wants to be. Something scary I am sure.
Today Derek and Ella had to wear coats to school, it was only 35 this morning. Derek needed a new coat and I didn't know it, so he had to borrow mine, but that is ok, its a man's coat anyway. Think we need to shop soon. Emma is all cozy and still asleep this morning, wrapped up in her dreamsicle blanket. Oh not sure I posted what that looks like she got it from a group called lovequilts. I am sharing a pic so you can see how beautiful it is. It reminds me of Shevaun, my dear friend who died of cancer when Emma and Ella were a few months old, she used to collect those angels. Ella is named after Shevaun so she is always trying to steal Emma's blankie LOL.
Posted by LJR at 8:15 AM
Tuesday, September 04, 2012
Posted by LJR at 9:25 AM
Tuesday, August 21, 2012
Posted by LJR at 3:31 PM
Saturday, August 18, 2012
Posted by LJR at 4:56 PM
I had Emma some pads made to go under her trachs, they prevent rubbing, dirty neck and help with small leaks. Yes you can use gauze but they aren't near as cute! I'll be buying mickey button pads soon, maybe in matching patterns but maybe something knew. They are washable and made with bamboo cotton, which I love. We got them from http://www.patchworkpeddler.com/
Posted by LJR at 4:48 PM
Tuesday, August 14, 2012
Posted by LJR at 8:41 PM
Tuesday, July 31, 2012
Posted by LJR at 4:30 PM
Sunday, July 22, 2012
Just got word that Emma's favorite nurse (and mine) DeLene has died. There are no words I could write to say how sad we are and how much of an awesome lady she was. Please pray for her family.
Posted by LJR at 12:16 AM
Sunday, June 10, 2012
Emma and I are using this blog to urgently request prayers for our friend Tricia. She is facing rejection of her donated lungs. You can read more about her here at their blog (read the story at the top for background) http://cfhusband.blogspot.com/ The words I need , to express the urgency of prayer we are asking for, they escape me at the moment, so I just ask please read their blog, prayer hard and ask God to heal her!
Posted by LJR at 1:47 PM
Saturday, June 02, 2012
I haven't been updating as much as I should. Especially since Emma was in the hospital in April for treatment of what we thought were seizures but turned out they were spasms. It was just easier to update at facebook and make calls. I get burned out sometimes on updates I think. She was put on a new medication, which seems to have helped some. Other than that minor hiccup she is doing great. Enjoying the summer.
Hoping to take a trip to KS to visit family this summer. It will be Emma's first vacation. Ella's too I guess since they are twins ha ha. July 4th is the plan if all goes ok. Having family drive to get us since we still do not own a car, hoping to one day get a wheelchair van so we dont have to get Emma in and out of her wheelchair and pull her vent and other machines off of it. Riding the bus in town is easy since she can stay in her chair like that. Just had to get her a new car seat for the trip. its pink and its sweet. She is still so tiny. 7 years old and 28 lbs and only 36 inches tall. Her not standing and walking just keeps her little I guess. Still wearing a size 6 infant shoe and its big on her! My little bitty bumblebee.
So I will try as always to update as much as I can, I know I always promise that. But this time, I mean it. I promise *crosses fingers behind her back* LOL
Posted by LJR at 9:03 PM
Friday, January 27, 2012
Posted by LJR at 12:28 PM
Seven years have passed since Emma first coded on us and died. God brought her back to us, and not a day goes by that I don't thank him for that. That night I witnessed a miracle, and I haven't stopped witnessing it since. Every day she is with us is a miracle, every day I can cuddle with her is a blessing.
That night 7 years ago I prayed for his help, for him to protect Emma. I sought the Lord, and he answered me, and delivered me from all my fears. (Psalm 34:4) THANK YOU GOD!
P.S. The above pic was taken of Emma and me last night at Ella's girl scout ceremony.
Posted by LJR at 9:18 AM
Wednesday, January 25, 2012
I have just realized that I set an email with this blog and listed it on the bottom for contacts, I totally forgot I had it, so if you emailed me and I didn't get back to you promptly I am sorry. I am trying to answer things now and will make sure to continue to check our mail on a daily basis. You can write us at firstname.lastname@example.org. We love questions and comments, and don't forget you can comment here as well. I plan on updating the blog a lot more, its just been a dry spell where thankfully everything has been doing wonderfully at our house. No updates usually means no exciting medical news which is ALWAYS a good thing.
Posted by LJR at 7:49 AM
Tuesday, January 17, 2012
Posted by LJR at 9:22 PM