1/31/2010 Doc Gives a High Five

I spoke to Fred this evening. He said our girl is doing well. He said the doctor came in and gave them a high five. Fred had thought about staying there and sending the kids home with their grandparents, but Rachel is doing so well, he brought the other kids home himself. What great news!! Hopefully they will all get to come home soon.

1/30/2010 More Good News

Rachie asleep in Emy's arms for the first time since she was put on the ventilator.
They have decided to take Rachel off the ventilator this evening. They believe she is strong enough now to do so.
She has had such a good weekend. She was able to spend it with her whole family. Emy made it back down there after Jack's game Friday morning at one o'clock in the morning. Fred and Emy both said it has really been a good weekend. They had Grandma and Grandpa Petersen with them too as well as some other friends.
Thank you again for all of your love and support.

Weekend Update for Rachel 1/29/2010

Emy emailed me the following update:
Rachie's ventilator settings have steadily come down over the last couple of days. If all goes well with lowering the settings tonight they might consider taking her off of the ventilator this weekend. Yay!

The whole thing is frightening. We don't want to go too fast and then have to go backwards. Slow and steady wins the race....right?

I'm very anxious to have my whole family home again.

Rachel and her family received a care package from some friends. Fred said they loved the stuff. There were treats and snacks, blankets for Emy and Rachel, magazines, matching jewelry for Emy, Rebeccah and Rachel, letters from friends and family, a special treat from Beccah...she had made a small house at school and little hearts were inside with a special note on each heart from their friends at school.
I really think the whole community is praying for this little girl and her family. They have so many people who love them and care about them. Your prayers are being heard and Rachel is still fighting.

Rachel Smiled Today 1/28/2010

I talked to Fred this evening and he said Rachel had a good day. The therapist came in and was concerned about the rattling that could be heard from her chest. Fred suggested "Why don't we just hang her upside down and suck all the snot out of her?" They didn't do it and left. Then another came in and Fred made the same suggestion to hang her upside down and suck out the secretion. This therapist said "Hey, that's a good idea." They adjusted her bed tipping her head down hill and sucked out a lot of secretion. After that, she had a long nap and was doing quite a bit better. FRED is a genius! He is her father and probably knows best what she needs. He got a good nap in too.
They are still trying to take some of her settings down, but kept the ventilator settings the same today. She is doing pretty well and don't want to take it down too fast. They are afraid if they take it down too quickly, she might not be able to handle it yet. Her heart rate is as low as it has been while being there. (This is a good sign).
Fred got her to smile tonight. He said he wished he could have gotten a picture of her smiling. He tried again and this picture is "pretty close to a smile," he said. We talked about her fighting spirit. She is a fighter and we are so proud of her.Emy was able to come home Wednesday night. Jack had a ball game. (Declo won! Congratulations, Jack!) She wanted to see him play and she needed to see Beckah, Sam and Jack. I can't imagine how hard this is for their whole family.
Emy went to work Thursday. Jack had another basketball game tonight in Kimberly. Emy took Rebeckah and Sam to the game and is now on her way back to Utah with all 3 kids. They will spend the weekend together with Rachel. Fred will come back on Sunday to take care of a few things and to get the kids back for school. Emy has planned to take the entire week off.

Rachel, we love you and are very proud of you. Keep fighting! We'll keep praying.

Making Progress 1/28/2010

I just spoke to Fred. He said Rachel had a good night last night. Yesterday they worked on lowering her settings and she responded well. Fred thinks they are about half way from where they started. She is bright eyed and knows what is going on. Rachel is starting to get irritated with all the things they are doing with her right now. Fred takes this as a good sign. He said before, when they would adjust her or other things, she just didn't really respond and now she is getting mad. Her fight is coming back and we are all happy to see this. They will continue to work at dropping the settings in hopes to get her off the support and stablized on her own.

Fred said he promised her Uncle Mark, Tim and Aunt Jana were coming to see her. They came and she was delighted to see them.
We are so glad she is responding so well. Many thanks for all the prayers and support. She still has a way to go yet, so please continue praying for our sweet little Rachel.

The Fred and Emy Story....

Fred and Emy were married in 1992. They had their first beautiful baby girl in 1993. Hannah would now be 16 years old. She passed away July of 2000. She had Metachromatic Leukodystrophy (MLD). Fred and Emy didn't know she had anything wrong with her the first several years of her life. Emy and Fred went to a genetic counselor who told them both Fred and Emy were carriers and that their children had a 25% chance of getting the disease. By this time they had 3 children. Two out of the three had the disease. They had decided they were done having kids, when they found out they were pregnant with triplets: Rachel, Rebekah, and Ryan were born in August 0f 2000 and all 3 had the disease. Fred and Emy moved to Salt Lake City after their birth to be close to Primary Children's Hospital's Bone Marrow Transplant Unit in hopes to help their babies.
Hannah passed away this same year at the age of 7, the viewing was the night of Emy's Birthday. Three weeks after Hannah died, Ryan was taken off life support. They have 3 beautiful amazing children in wheel chairs who continue to fight their battle with MLD. Jack their second child is the only one without the disease. I have never seen a more charitable, amazing, and selfless brother and son. Fred and Emy are two wonderful, loving parents. We are all grateful for them and so grateful for the way they live their lives. They are an example and inspiration to all who know them.

January 28th More Good News

Rachel and Camryn's kitty

Rachel had a good night again last night. The Respiratory Therapist says she looks like she isn't working as hard, but they are still cautiously optimistic. Her heart rate is continuing to come down (which is a good thing). They have been able to start sucking more secretion out. The oxygen has been turned down (another good sign). Emy explained that normal room air for us is 21%. Rachel is at 35%. She is still very critical. Her other vent settings are still very high, but they will work on decreasing them a little at a time as their goal for today. So over all....YES there is progress being made.
I believe it is an absolute miracle she is improving like she is. She is loved by so very many people. I have had a lot of phone calls and remarks saying how much she and her family have changed lives. Especially our community. Please continue to pray for Rachel.

We love you Rachie!

January 27th Still Optimistic!

I talked to Fred tonight night and he said their day had been a roller coaster. Rachel had a decent day. They took X-Rays and her lung is starting to fill back up. That night had been a good one and her heart rate was starting to come down. They are slowly going to try to take some of the support settings down to help her work on her own. She is still very critical and Fred anticipates they still have a long road ahead of them. Fred and Emy are optimistic and hopeful. Here are some pictures of Rachel getting her hair washed.

All clean and pretty!! :0)

Today's Update for Rachel

Jack and Rachie listening to music on the ipod.

I Just spoke to Emy and....Good News! She is coughing a little, her eyes are open and Emy syas she actually cares to see who is there. The support settings are still very high, but her oxygen support has dropped to 35% as where it was up to 100%. Her air support is at 21%. This is all good news. She is doing better than she was. The doctors are still cautiously optimistic. We will continue to give any news we hear from Fred and Emy. Please keep praying for Rachie. Your prayers are helping.

Update on Rachel 1/25/2010

I just talked to Emy. She said today has been a roller coaster of ups and downs for Rachel. They had just spoke to the doctor. The doctor is cautiously optimistic. Rachel's blood gas levels have been horrendously high. They still are, but they are coming down: which is good news.
Emy had some old friends come to the hospital to see them. These are Emy's high school friends. They call themselves the Blueberries. I think they lifted Emy's spirits a lot. A lot of family members also traveled down to be with them.
We will be sending a package first thing Wednesday morning. If there is anything you would like to send, please get it to me (Holly Darrington) or to Charlyn (Darrington) Tuesday. You are also welcome to call me. I can come pick up any letters you might have if you are unable to email them. My phone number is 678-6002.

Please continue praying for Rachel and her family. Thanks to everyone for your love, prayers, support and concern.
I am also creating a blog for Rachel. You can begin getting updates at fredandemy.blogspot.com

Fred sent me these pictures today. Isn't this a sweet picture of Rebekah and Rachel;
holding hands.

Rachel asleep on the ventilator.

The black vest is the CPT treatment she has to have. It shakes her like a paint can.

Pray for Rachel 12/25/2001

For those of you who don't know or haven't heard, Fred and Emy Darrington's little girl, Rachel was taken to Primary Children's Hospital Thursday when her left lung collapsed. She had been on and off a ventilator. Yesterday her right lung collapsed. She is on the ventilator and is currently stable. I just got off the phone with Emy and we decided to have everyone check here for updates. Emy will let me know if there are any changes and keep me posted on how Rachel is doing.

Please pass the word along to check here for updates, so they are not bombarded with phone calls.
Charlyn has Rebekah and Sam, and Jack headed down to Utah today around 11 o'clock.
Emy said "there is still hope, but it's ify."
Please pray for little Rachie.
We are putting a care package together for the family, and we are collecting letters for the family. You can email the letters to jeffandchar@q.com or get them to me at yyellow23@hotmail.com
We will be sending the package first thing Wednesday morning. If there is anything else you want to add, please get it to myself or Char.
We know there has been a lot of service done already for the family and we appreciate all who have called and been involved.
Emy also said you can call her, but she may or may not answer. It might be easier to check here for updates.
Please PRAY FOR RACHEL.