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.LOOOOOOOOOOOOOOOOOng day
Today started at 6:30 (although I had planned to get up at 7:00... Alivia decided to get up earlier). We left our house around 7:30 and got to Hershey in time for our 8:15 appointment. The first thing that we did was put numbing cream on Alivia's hands. It takes a hour to work so we walked around. After about 45 min she had picked the corners of the bandages off and the cream was oozing everywhere so we decided to start the IV early. (they put in an IV so that if she had to get a transfusion or vincristine it would be all ready..only one stick). Let me just say that our experience today and our experience on Tuesday were like night and day. Alivia didn't even cry today when they put in the IV. The nurses in our office did such an amazing job. They also did a dance and sang a song for her while she was getting her blood pressure checks so that she wouldn't cry. They are amazing. I love our nurses. I gave her her chemo and then we went for ANOTHER walk to wait for the lab results. After an hour we came back and checked the WBC count was down to 101 (that's minus 16 thousand since Tuesday!!!) WOO HOO. Almost didn't matter to me that her Red's were down too and we had to do a blood transfusion. So we gave her tylenol (you can get a fever from blood transfusions) and went to lunch while the blood bank was getting her blood. Then we sat in the infusion room. Now I had no idea how long a tranfusion takes....but 3 hours is a long time for a 1 yr old to be in one place. Thankfully she fell asleep for the first 1 and 15 min. Then we watched movies, colored, played with stickers, played with toys...whatever we could think of to keep her occupied. She made it through and is a rosy cheeked little girl once more. (I didn't realize she was pale since i"m with her each day but it does make a difference). We didn't even have to see the doctor since everything looked good.
So we will continue on this path for a while as long as it is working and pray for a cure. On Monday the 26th she will have a port put in. We going to prayerfully consider which kind to do. There are two options...broviac and medaport. The one hangs out of the her chest and the other is under the skin. We are leaning one way but want to really think and talk and pray about it before we decide.
Pray for...
...continued lower WBC (next check will be Monday)
...wisdom about the port
...some time to relax and enjoy each other.
Thanks to...
...Cynthia for sitting through the whole day with us. She got mistaken for my friend or Alivia's aunt today. No one believed she was Alivia's grandma. Hope that happens to me when I'm a grandma.
Have to go cuddle my cute husband...and my cute little girl.
posted by Alivia's Momma @ 5:17 PM
14 Comments:
Praise God! I'm so glad her WBC is lower and that the transfusion went well. I am praying for you for all and for everything, and wisdom about the port. I love you all so much,
beth
Ditto, Beth! 2 Samuel 22:37 talked 'bout God making the "path wide for my feet", so David wouldn't turn his ankle. God cares about ankles, ports, numbing cream, IV's, WBC's, every hair on Livi's head (and everyone else too), but I am so grateful for today. IT was so long, but you got to go home! With pink cheeks no less...Mom
Hope you get lots and lots of cuddling done tonight!!! Sorry I was psycho stay at home mom on the phone today. It has been a long week around here!!! But probably not as long as your. I am encouraged by your continued positivity and energy...truly proof of God's grace to you during this time!!!
Love you, Les
Praise the Lord for His answer to lots of prayers! I will continue to keep on praying for you all...
Audrey
We have a friend who's 10 month old has a brovaic. Her blog address is http://www.sagraves.blogspot.com/ if you want to ask her some questions. I'm sure she'd love to talk to you.
So very thankful for a good report!! Hope you guys have wonderful and relaxing weekend!
Happy Father's Day to James!!
Maryann P.
James, Emily and Alivia,
"Now I commit you to God and to the word of his grace, which can build you up and give you an inheritance among all those who are sanctified." Acts 20:32
That's my prayer for you guys today.
Much love,
Sara
Wow! A good report cheereth the heart! There, I just made up a Proverb!
I'll be praying about wisdom on choosing the port and for continued good WBC and RBC.
Have a great weekend!
Mary Ann K.
Wonderful news! I've been praying you wouldn't have to start the Vincristine. I'm sure you've heard all this about ports, but even though the medaport has to be accessed each time you use it, you can use the numbing cream before hand (not an option if it's an emergency, though). Since the other port has lines hanging out, it's a bit easier to get it caught or pulled when you're not using it as opposed to the medaport (and it can be hard for a baby to not pull sometimes!)...just some thoughts in case they might help.
Christina Smart
what a beautiful family!
nora has told us all about you and we have been praying for you!
much love,
Clint and Chanelle Richardson
Dear James, Emily & Alivia,
I'm glad things are going well for you despite all the challenges of tests, IV's, appointments, sleep deprivation, etc... I will pray for you & your family for wisdom in the days ahead. Alivia is a sweetheart! Give her kisses from us in Indiana, OK! I'm so thankful for the care you are receiving: the doctors, nurses, family, friends. What a blessing!
Love,
Shawna M.
Hey Emily:
I have given the word to several friends who are related to people within the state of Pennsylvania to forward on the message to these family members up there to donate blood in Alivia's name.
After doing this, I was looking on a search engine to see if there were any regulations regarding people donating from other areas of the country to one particular blood bank out of state and while searching, the title of an article popped up about Penn State University students giving so much of their time and effort to be blood donors. Pretty interesting considering the article was about a university within the state you live in. It got me to thinking (if you haven't already thought to do so), if you could look into doing blood drives specifically in Alivia's name at universities and churches around the state of Pennsylvania?
I am still praying for all of you...for you all to have the peace that passes all understanding that only the Lord can give and for you all to continue to be the tower of strength and the image of the God you serve you through these hard times.
Love,
Caroline
i love you so much and am praying for you all the time. kiss that baby girl for me.
P.S.
Happy Father's Day, James. You are a fantastic father and husband.
Beth
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