I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day -7
If you notice the time of this post you are probably thinking "what is she still doing up? she should get to bed" Tell that to Alivia. She hasn't gone to bed yet. We have tried everything. We watched Elmo in Grouchland more than once, walked, rocked, had bottles, told stories, prayed, sang and nothing has worked. Currently she is playing with her Pa and her dollhouse. We need some sleep over here in 7260. Here are a few photos from today.
Posing for the camera... I love this face.
Eating Icecream Dibs. She wouldn't put them in her mouth whole she had to squeeze them. Thus the mess.
This was my therapy for the evening. I spent a bit of time painting the door. I figure you will know how stressed I am by how often it changes. This is door number 1.
All the meds went fine again today. Alivia has gained close to a pound since Tuesday. Mostly due to steriods. I guess this is how it will be for a while then she will start to lose weight from the lack of eating.
We have a winner for the first photos...The Bueche family and The Garner family tied. Thanks guys. We have the pictures up on the wall at Alivia's eye level and she walkes over and talks to them. Oh and she walked over without any prompting pointed and said "Jude" (the Garner baby) Too cute.
Tomorrow is our last day of Busulfan then we start the new med on Sunday. Monday is the ATG. Today I asked why ATG has such a bad reaction and they said it was because it is a rabbit serum...meaning that it is derived from rabbits. I dont' know how to explain it exactly but since it is from rabbits there is obviously much chance of reaction. (ie. fever, chills and other worse things) Pray for sleep (still aren't getting any) and for an easy transition to the new meds. Going to try to get the girl to sleep.
posted by Alivia's Momma @ 12:54 AM
17 Comments:
Praying that even in your sleep deprived state you will have abundant strength to care for Alivia. Praying for sleep too :).
Love,
Amy
The door looks great! You're such a good mom! Alivia still looks so happy, she's amazing. Good luck with the med switch.
Thoughts and Prayers Always,
Natalie Murdick
Hi everyone! I love seeing the pictures! Thanks for posting them. I'm praying daily for you all and especially for complete healing for Alivia. Sorry that she's not sleeping much, but I'm not surprised. When I was going through chemo, I experienced the same thing. My body was tired but my brain was wide awake and I didn't sleep well at all. It was really weird. I think it was the steroids I was taking, or maybe a combination of the medications. Praise God for the meds they have now to make the horrible side effects like nausea less severe (I never had any nausea), but they can have other interesting side effects. Hang in there. Before you know it, this will be a distant memory!
Love to all,
Marge
Love the door! Love seeing your parents with you, too. :)
I pray for you several times throughout the day. I'll start praying for you when I nurse Bella in the night, too, knowing you'll most likely be up. And, I'll try to get pics. posted soon on our blog..we don't have a digital; that's the hold up.
love you much, friend.
Just want to say that I am continuing to keep you in my thoughts and prayers. It is such a blessing that you have your folks there to help. I am especially praying for sleep for you, though - I am sure I can't even imagine the challenge there. God bless, and I will continue to pray for you all.
Cathy S.
Praying for today to bring you rest. Praying also for the transistion to the new meds...that they have as little reaction as possible and that they do as the are intended in this process.
Praying that you feel well rested every chance you get to rest...even if only for moments.
The door is so cute!!! Thanks again for keeping us posted!! I can't imagine the waiting and wondering without this blog. What a blessing it is!
love the door, but the best photo is livi and her ice cream! she looks like she really enjoyed her treat. despite being sleep deprived, you all look great. we will continue to pray for that much needed rest and the transition to the new meds.
praying....
lb
It must be so hard trying to get through the days on barely any sleep. I'll pray that Alivia will feel comfortable enough to get a little more sleep and we'll continue to pray for things to go as smoothly as possible especially with the rabbit meds :/ Nyah loves those dibs too. She sticks a whole one in her mouth and then spazzes out because its so cold haha.
Just wanted to let you know that we are still checking your blog and praying for you. Last night my husband commented on God's grace on James, that he could still work and support his family during this difficult time. We'll keep praying.
Melissa Stoltzfus
Hey everybody!
Her pictures make me laugh! And the door is awesome! My favorite part (of course) is to get to see Gigi and Pappy (I use this name just to annoy you). I miss all your faces.
My prayers continue to be "opposite". I'm asking the Lord to bring the opposite outcome of what the doctors and nurses expect. I'm asking that she gain weight with the chemo instead of losing. My constant prayer is that He would keep her little body from going through the "violence" of this ordeal; whether it be all together, or whether she has to go through it, but He keeps her from what would normally happen---That everyone would say----"This makes no sense. She should be very sick...."
Thank you so much for your faithful entries, your faithful reports, your honesty and humility and God exalting faith.
I love you Emily. I love you guys.
kristi
So far so good. God is still in control. Sorry you haven't gotten much sleep. Will pray for that. Aunt Cheryl
Hi Haughery's, Pa & Gigi! Thanks so much for sharing the great pictures. I'm praying that God would do far greater than we can ask, think or imagine. Love you; miss you Allen's.
Maureen
Hey Emily-
Thinking of you guys all through my day- we need to stop this game of phone-tag!
LOVE the door.
Once again the pictures make me smile. Jeremy has quite a few pictures of Alivia in his room so sometimes I go in there and just look. Think of all of you often and still praying.
Carol Landis
I love the painting you did.Wow. I haven't got around to taking any pics. I have plenty of costumes and two cats, so i'm thinkin' 'bout doin' those(too many apostrophes). I'm praying for you at every meal, and more. Love, Lydia J.
I am praying for SLEEP--
SHE is too precious !
I pray for days of blessings !
GOD LOVE YOU
PM
hi James, Emily, and Alivia,
Devon and I are praying for you guys and reading your blog regularly. Just wanted to let you know that I read and understand every word of what you post about the transplant. You probably understand more of what's going on than some of the newer nurses on my floor. I'll be praying that the ATG goes well. I usually see a reaction in my patients within the first 30min to an hour of starting the medication, usually a fever, n/v, chills, etc. It's not a lot of fun, but the symptoms will go away with other meds and it does get better each day. I don't know how many days she is getting it for, but day one is always the worst, and sometines day 2, but after that, it's not such a big deal.
I love the pictures of Alivia hanging out!
Kristine
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