Monday, December 28, 2009
See? More matching. And Daddy bought Mommy a flip camera for Christmas and there are many videos of the girls on there in their 2nd matching Christmas outfits...I am just clueless as to uploading that.
We actually got home late Christmas Eve and put the girls in their jammies and took lots of pictures and its a good thing too. Piper ended up sleeping through all the present opening and did her own thing around 4:00. Linley loves that big old giraffe...it was given to her by a friend of Chads and shes been hauling it around and lounging on it since then.
Apparently I need to post another post in order to add more pics...I need a tutorial on blogspot.
Thursday, December 24, 2009
While we were at Clinic, I was able to meet another little Pyper. I have heard about this sweetie since my Piper was diagnosed. Big Pyper was diagnosed at 6 weeks and has had quite a long journey in her 3 years. I soooo enjoyed meeting her mom, Mandy and finding another mom who has already been through all of this. Infant ALL is so differant and uniquely treated that I now only know of 2 others who have walked this path...it is so scary sometimes but I am thankful for both the Karasicks and the Sellers for answering questions for me.
Linley is wonderful. We took her and Piper to North Carolina to a party on the 22nd and Linley had a blast. She loved being around so many other kiddos and I love watching her play with the children of my own childhood friends. You know your getting old when...
I am making a point to take my camera with me for the next few days. No need to keep my girls sweet faces to myself!
Sunday, December 20, 2009
We went to the clinic on Friday for chemo and it was so nice to be in and out and not walk across the way to be admitted. Piper will not have any chemo until the monday after Christmas and that too will be a few hours and then home again. The rest of phase 3's treament is oral and can be done at home.
Linley has been battling a cough. Nothing more but she is keeping away from Piper, who thankfully has not had her counts drop too much. Please pray that Linleys cough stays just that and does not develop into anything more. She is such a tough 4 year old and has only been truly sick 2x in her life...amazing!
I hope that everyone has a very merry Christmas. Around here we celebrate Jesus' birthday and I pray that you too know Him and celebrate with us. He loves us so.
Sunday, December 13, 2009
Want to know how I calmed her down this morning after one of her fussy jags? I gave her a plastic bag. Yes, a walmart plastic bag. The ones that say "do not allow children under 75 to play with this so that they dont choke and unattentive parents sue us silly". She loved it. ( And I did tie it up in multiple knots and helped her hold it) And I was remembering another lapse in my mothering mentality, that thankfully I was able to common sense think my way out of. Ready? When Linley was younger I used to give her baths alot in the morning while I was putting on my make up or doing my hair. I am a multi-tasker to the extreme and realized this one day when I was watching her, already washed up and happily playing in the bubbles. I thought "hey, I could blow her hair dry while she keeps playing and it will save me a step towards getting us out the door this cold winter morning". Thankfully I DO know it is beyond stupid to use a blowdryer in the bathtub so I waited until she was played out to first, get her out of the bathtub and then proceed to dry her hair. It was at that moment and again today with Piper that I realized that I am the reason manufactorers put warnings on everything.
Please someone tell me that they havent also had temporary stupid mothering thoughts...I swear I am a wonderful mommy.
Saturday, December 12, 2009
This morning came quickly, although we both slept well. Piper was up at 7:30 and has been a little fussy at times. She hasnt been napping very well, but the nurse gave her some benedryl to help her rest. And we are (always) having problems with her catheter. She leaks no matter what, every time. They put it in her yesterday while she was sedated while doing the triple interthecal because Daunorubicin is very red and very strong. Her urine in her catheter bag is pink as are her tears...we want as little of that on her bottom as possible...and it is such a pretty little bottom too. Pray the catheter quits with the shenanigans and hold up. She had a dose yesterday at clinic and another today at noon. Hopefully it will be cleared out enough tomorrow to take it out without concern of harm.
I am tired after just one night here. My best friend wanted to come help me out this weekend but had to cancel at the last minute because of a cold...and I miss her. Its rough being up here but at the same time I feel very cared for. And its not like Piper is allowing me to sit around and think about anything for long anyways. Apparently they have had 3 new leukemia daignosis in the last 4 days. As a "weathered and experianced" mother of a leukemia child, I feel so much for them. I was walking with Piper (as I do all day, every day) and I passed a grandfather in the hall crying. He was trying to collect himself but was failing and as I rounded the corner and walked away my heart began to break for that family and began to cry. I hope none of you know the pain we feel. The way your whole world becomes derailed and you have so many questions and so few answers and children at home who miss you and bills needing to be paid and surprisingly at some point it becomes do-able. And the only way to get there is to muddle through the first few days and weeks and pray and hope that other people love you enough to take care of the details. I cannot explain how sad it is. When I watch new patients and families go through this it brings it all back and I cannot believe we have made it. But I am not foolish enough to think that it was us alone who did it. Its all the prayers and its simply time. Ive said it before but I will not make it until tomorrow without your support and my God. Thank you so much...and when you pray for Piper pray for the new patients and their families.
Wednesday, December 9, 2009
As you can see we made a gingerbread house in the time that Piper and I were home with Linley this week...and as you may also see, apparently gingerbread house making is not one of my skills. Notice the flat, modern, california style roof? Yeah, thats not on purpose. Somehow I didnt notice the size differance with the walls and the roof. And icing is tough to restick. But Linley didnt notice so we were good. Not that Linley noticed anything in between all the candy and icing she was sneaking. And that is my sweet (happy/healthy/wonderful) Piper sitting so happily watching me and Linley, she was also a fan of icing.
We admitted today back to CHOA (Childrens Healthcare of Atlanta) and I will update this tomorrow with all of that information. As of right now we are good and happy.
Tuesday, December 1, 2009
Piper is doing wonderful and we are home until next Friday, if she continues to do so well. I am loving the chance to love on a well, happy baby. Its been a slow slope downward through all of this chemo and treatments. One day Piper is doing fine and then day by day she begins to get quieter, cuddlier, less interactive. I am almost glad that we ended up in the ER and hospital last week because her counts are going up, almost to normal, and she is acting perfectly fine. Smiling, laughing, eating...no diaper rash or puffiness...If we had not been admitted then her counts would not be so good and she would have spent last week feeling icky from the previous weeks chemo. As of right now she has had no chemo for 11 days and you can tell.
So for the next 9 days I dont want any talk of Leukemia around here. I intend to live in my fantasy world of healthy little kiddos, normal family dinners, Christmas prepping and maybe, just maybe, a date night with the man I love.