Monday, September 28, 2009 10:14 AM, CDT
Just wanted to update you all. We all have been sick with different sinus related illness. It is that time of year.
I find myself pretty tired these days and it makes it hard for me to get to much. And I must confess, this past weekend was one year and it brought up allot of memories when Don first became ill. It has been an emotionally trying time for me.
I am struggling at this point and time and you would think that I would be celebrating
But the reality is that I am still grieving. Grieving does not have a time table and I wish it did.
Don is still continuing a slow but steady improvement. He does get headaches from time to time. He is also still in physcial therapy. We are most grateful for that. His physcial therapist is an amazing women and we see her passion in what she does.
We do have a praise to share. The university has worked it so that we can get the reduction in Colbra health insurance. That is an answer to pray and we are so grateful to God and the University for working with us.
We have about five weeks till we leave for Mayo. Don will see specialist for annual follow up and some testing. We could be there for up to 14 days.
I am still working with all the deludge of paperwork sorting through all the insurance issues of payment that we have. That at times feels so overwhelming. I would appreciate pray on this one too.
We again, could not do this without you love, prayer and support. We love you all and are so grateful to you.
Bless you
Diane
Monday, September 28, 2009 8:48 AM, CDT
Sweet baby…I wanted to tell her that that was the original plan today, but she ran fever all weekend and around 4 am today, it got up to 103.
I could tell something was going on b/c she kept getting right on top of me and she was shaking and breathing hard. When I asked her why she was breathing like that she said, “Cause I’m tired….like you!” Ha! But the nurse came in and confirmed she was having a fever….So I guess we’ll have to see what the docs say. I’m hoping Dr. Yu will come in today to see her.
They usually do not let the kids leave until 48 hours AFTER they’ve had fever, to make sure there’s no infection. This is very typical of stem cell transplant patients, so they are telling me not to worry. Fevers are a part of it.
Anyway, I had a feeling when they told us we’d get to go home today that something was going to happen–it always does!!! Every time, lately.
So I explained to Adrianna that we can’t go to the Hope Lodge yet b/c of her “feebers” and she said, “They want me to eat some food and drink.” I told her yes, they do and that means we’ll get to leave even sooner! So she did take some sips of milk.
Last night she made me go to the store to get her some muffins, so I picked up a smorgusboard of stuff to eat, and she tried a few bites of muffin, honey bun, and fruit chews, but didn’t like any of it. So we’ll keep working on that.
The nurse just came in and said Dr. Yu will be out of town all week, so we probably won’t get discharged until NEXT MONDAY b/c normally she has to be here before they’ll discharge transplant patients. OMG, another WEEK?!!!! That totally stinks….I hope they change their minds. I don’t think we can bear another week in this room….especially this poor darling who wants to leave soooo badly!
Her counts are really high, so she doesn’t have to have Neupogen anymore to raise them. So all we need now is to have NO more fevers and then we should be ready to go, if they will let us. She has 100.9 fever right now- anything over 100.4 is considered a fever, so they’ll give her Tylenol.
I just want to send out a SUPER DUPER thanks to all my beautiful friends who came to New Orleans this weekend to hang out with me and take me out for a fun night and dinner. It was an incredibly awesome night and the first time in a really long time we were all together. There were 13 of us and it made such a difference in my mood and attitude! Thanks so much, ladies! I know it’s so hard for us to all get together these days, but it’s so worth it when we do!! Nothing like your friends!
Please remember us this week, and we’re hoping for ‘NO MORE FEEBERS!’
Thanks for checking in,
Stephanie
Sunday, September 27, 2009 7:00 PM, CDT
Hey! This is Frances. I have just returned from the 5 PM visit and I am more certain that Callie can hear me. I told her I had to leave 5 minutes early because I was meeting Landon downstairs and a tear came from her left eye and her respiration
“Lord, I love you, and I wait on your perfect timing. I know you are the One and Only to heal by baby’s broken body and I pray fervently that you do so. The pain is almost unbearable. Is this how your Father felt when he sacrificed you on that cross? Callie is not a perfect, sinless teenager. But, she does know who you are and she puts you on your throne. Please forgive me and all my short comings. I pray that you reveal those sins that I have hidden from myself so we may have perfect communion once again. Please do not let me be an obstacle for Callie’s healing. Reveal yourself to me, enlighten me. I beg you. I love you. I pray to the only Perfect One in the name of Jesus. Amen.
Frances
The Prayer Link 