Thursday, December 16, 2010

we're still here

I'm sorry I haven't updated lately. We've been busy with little things and I just haven't blogged about the day-to-day.

Matt's parents came into town Sunday through Tuesday, we went to Shaina's choral concert on Monday night, and went to a Bible Study/Christmas party tonight. It's been a good week, but we've mostly been staying at home during the day. It's been so cold and wrestling a thickly wrapped EB kid in and out of a coat is a pain in the you-know-what. 

Things are good. Jonah is stable. Life is stable. We are happy. Thank you so much for your continued prayers and love. I know Jonah and all the other EB Sweeties you pray for are so thankful.

Please keep Charlie in your prayers. He will soon begin the bone marrow transplant. We've lost four out of fourteen of our babies, but several of the survivors are showing great improvement. It's a scary but exciting road. You can follow his site HERE and it will always be on my right sidebar. I hope you got to watch the TLC special last night or have plans to watch it in the future. It was really amazing. 

Please remember who we're fighting for, and if you are considering end of the year donations, please consider DebRA or EBMRF


Marcy said...

I watched the episode today while the kids napped... I cried.cried.cried... I pray that all EB babies see that kind of improvement after a treatment like that. Heart wrenching to see his story. I read about Jonah thru your blog but to see another boy go thru it is a reality check. You are a strong mom to witness that each and every day.

Edling's said...

I'm glad to hear that things are going well for you all. I've been thinking about you guys. Give Jonah a hug for me. Merry Christmas! Love you!
PS- Super cute Christmas picture!I love Jonah sweet smile!

chinamoon1420 said...

Thank you for letting us all know about the TLC show being on. I am so glad there is more awareness being brought to EB. I had never heard of it until I saw your button on McMama's sidebar. I have educated many people about it since then. I haven't come across anyone so far who has heard of it. Now I try to check in occasionally with the EB kids you have listed. I am so glad I found you. You have been such an inspiration to me. Even though my child deals with hemophilia it is nothing compared to what Jonah, you and Matt go through. I have been spreading Jonah's story since I "met" you to bring more awareness and hopefully one day put an end or at least make things a little more bearable for these sweet children.

I am so happy life is good for you. It is nice to hear you are out of your how about another lesson on the Thirsty Soul book you are reading!!!

Much love and prayers

Laura A said...

That was an amazing show. It broke my heart when Payton just screamed at bathtime. I hope they'll do a followup on his BMT progress!

Hope all of you have a wonderful Christmas - love you very much!


Angela said...

Can't wait to catch the special on a replay. Thank you so much for sharing the replay times as I just missed the initial viewing :(

I hear ya' about the coat thing. Can I share a product that I just love? I have used it on my 2 youngest children until they were able to put their own coats on.

I have gotten so many compliments on it and questions as to where parents can get their own. I even carry around Donna's business cards in the winter because I get asked about the poncho ALL.THE.TIME. I just throw a pair mittens and the poncho on and my 2yo is ready to go. Of course he has a tradition winter coat for playing in the snow, but the poncho is the best (IMHO) for running errands and when I know we will just be going from the car to indoors and vice versa.

Okay enough rambling :)

Blessings to you...

Sarah said...

I watched that show the other night and it was so heart-wrenching, but I loved how it was hopeful at the same time. I thought of your family and I have a new appreciation for what you guys do every day. You go girl!!

Aimee said...

Dear sweet, Patrice:
This is such an awesome picture of Matt & Jonah! Hannah is really looking forward to Monday:) Thanks for letting her come and help! I hate that I will miss "our time" but we will just have to make it up later!
I love you, precious friend and pray that you and yours have a blessed Christmas full of joy and laughter remembering the birth of our tiny Saviour so many years ago!
Love & Hugs, GrAimee
ps-I watched the EB special on TLC (with one eye open and the other hidden behind my hands)! It was hard to watch but so promising!