Who's the cutest girl around?

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.

Friday, October 06, 2006

From Indiana

We made it safe and sound to my parents house. James and I got to spend a very romantic anniversary at the clinic and in the car. Not really what romantic dreams are made of but at least we were together.
The day at clinic was much longer than we expected (oh that hospital time gets me!). We arrived around 11. We gave Alivia her last dose of hydroxyurea before we left home. So when we got to clinic we got her port access (she did great as always) and went to have lunch while we waited for the results. There was a lot of confusion about when to give the Gleevac, how, and if we could even get it (insurance still hasn't authorized it yet). So we left for lunch not sure what the rest of the clinic visit would look like. Our docs nurse (who is new) Melissa actually tracked us down in the cafeteria and said that they would have us see our doc and check her liver enzymes because they were elevated for the first time last visit (didn't know that) and if they were any higher then there wouldn't be any Gleevac today. She also mentioned that if Alivia didn't take the meds orally they would put in an NG (think thats what its called) tube...meaning a tube that goes up her nose into her stomach. That way I would dissolve the meds in water and put it through the tube. No one (including all the nurses) thinks this is a good idea for Alivia. She is such a picker...if she can de-access her port and that is a needle then she could easily take the tube out. So we called my parents and James' parents and asked for prayer that we could get the meds down without the tube.
We got back from lunch and got her number. The WBC's had gone back up to 83 (from 74 on Wednesday) but her Reds and plateletes stayed pretty stable. So no need for transfusion. We finally saw our doctor. He was one of only 2 docs in clinic and was so swamped and behind. I think he was having a pretty rough day. We talked and he said that we would try over the weekend to give the Gleevac with this cherry flavored syrup (which we had Alivia taste and she liked)...the only problem being that the cherry syrup might make the meds inaffective. They are going to do a bunch of research and talk to a bunch of pharmisists that might have had to give Gleevac to little kids. So if on Monday they find that the cherry syrup isn't good or Alivia won't take it wit the cherry syrup we are getting the tube.
Then we got to wait and wait and wait for the meds to be ready. The 4 Diamonds fund finally authorized payment (cause insurance still hasn't) and then it took forever for the pharmacy to get it ready (cause counting out pills is very hard). By this time Alivia was so tired and ready for a bottle. I really wanted to try to give her the Gleevac before we left clinic so that we wouldn't have to do it later and so that the nurses could help out a bit.
Finally the meds arrived and Joanne and Holly helped us get all ready (pill crusher, cherry syrup, spoon, medicine cup, chemo gloves... the works). I crushed the pill then gave Alivia a spoonful of just the cherry syrup. She gulped it down. then we mixed in the crushed meds and spooned it into her mouth. She made a little face but took it all. We even had to clean the medicine cup with more cherry syrup and she ate that too. I was so excited, thankful and relieved. We got on the road around 4 and were home by about 7. Alivia did great on the car ride..even though she only slept for about the first 1 and 1/2 hours. She is the sweetest.

Please pray that the cherry syrup doesn't make the medicine inaffective.
Pray that the Gleevac does only good things to Alivia
Pray for complete healing WITHOUT a transplant.
Pray for peace for James and I. We have had some people share some horrible, sad, depressing stories about transplant and I know for me it is so discouraging. I need so much to only hear good stories right now. All others just eat at me.


Anonymous Anonymous said...

Hi, Emily - First of all, happy anniversary to you and James, and may God continue to bless your love for each other - so beautiful. Secondly, a little story that might bring some comfort: I pray that Alivia can be healed without the transplant, but some weeks ago, before there was so much talk of a transplant, I was in church and was having a weepy emotional day. Another lady offered to comfort me, and I told her I was feeling so concerned about Alivia (and explained a bit about her illness and so on). The lady told me that SHE is here because of a bone marrow transplant! And she certainly seemed fine and healthy! What was the chance that I was going to be crying to a transplant recipient? So I thought you might like to hear about that. It was a pretty amazing moment for me. I'm glad the Gleevec is going better, and I am praying about that too. Praying for God to give all of you a big hug.
Cathy S.

11:11 PM  
Blogger sarah said...

James and Emily,
We continue to hold you and Livi in our prayers often. Also ... Happy 5th Anniversary! I was thinking of you guys today since your big day was exactly a week after ours! What an evidence of God's grace in your lives as you reflect over the past 5 years and marvel at how your love has grown for one another. Livi is blessed to have you for her parents!

Sarah Herr

11:16 PM  
Anonymous Anonymous said...

Happy Anniversary, Friends! I'm sure 5 years ago you didn't expect to celebrate an anniversary this year, but here you are none-the-less. I'm sure you're at least grateful that you have each other!

What the heck with people telling you bad stories?! WHY?! That is shameful. Don't be discouraged. Please! YOUR HOPE IS IN THE LORD!

We love you!
Julie, Dan & Jude

P.S. Jude wanted me to tell Livi not to tell her mom that he wants to marry her. He heard her mom has a crush on him and didn't want to hurt her feelings! HA HA!

11:28 PM  
Anonymous Anonymous said...

What the heck...I just wrote... "I'm sure five years ago you didn't expect to celebrate an anniversary this year." I meant to say "this way"...not "this year". I hope that five years ago you planned on celebrating your anniversary this year! DUH! Oh, I hope it made you laugh at least!!!


11:30 PM  
Anonymous Anonymous said...

Hi Emily, When I was principal at Eisenhower, we had a little boy in kindergarten who had a bone marrow transplant. He is now a happy and HEALTHY 3rd grader!!! Our God is so good!
When your dad told me today right after you called for prayer about Livi's meds, we were in the JH auditorium, and he was getting ready to talk to the IASD staff. So I went to me seat and prayed for Livi, for you and James, for the doctors and pharmacists, and for your dad to have peace to do what he needed to do at that moment. When your dad called this evening to tell me about the cherry syrup, I was doing the dance of joy! Sometimes, I know, it doesn't seem like our prayers are heard. But then there are days like today when you get an instant YES. Take these little victories as a sign of the ultimate victory to come! Blessings to you all! Jill P.

12:16 AM  
Blogger beth said...

I'm praying for you and for everyone and wanted to say also...

Happy Anniversary
Love you two so much

hopefully see you soon

9:07 AM  
Anonymous Anonymous said...

A very Happy anniversary to the two of you. Oh what a blessing God has given the two of you to have just a great love for each other! Your writing that here is giving God GREAT GLORY! So as He has been faithful in your marriage. So He will be faithful with your little one's life! Did you know that all our prays are in a bowl in heaven as sweet incense before God and He is hearing our pleas even if we do not see the answers now.

Oh I am praying for your little one and bring her to Jesus and asking him to have mercy on her and heal her as He did with the ones brougt to him while HE was here. To give Him honor and glory due His name!

Love all three of you,

Lois Sensenig

12:15 PM  
Blogger Briana Almengor said...

Happy 5th! We were there, not blissfully married yet but hoping to be. Now, look at where we are, friend? We never would have guessed, would we?!
God has been with us each step even though those steps have taken us to places we did not anticipate or prefer.
Praying you are thoroughly enjoying this rainy weekend in Indiana...maybe there's sunshine there. I guess wherever Livi is, there's sunshine. :)

love you much, friend

2:46 PM  
Anonymous Anonymous said...

One of the best things that one of my doctor's said to me when I was worrying about my prognosis as compared to others was that I was wasting my energy. Livi is a unique individual and will have unique responses to whatever medicines she receives. What someone else's experience with the medicines and transplants are really do not mean anything about Livi. Don't waste even a minute thinking about what has happened to others. I keep praying for all of you.
Ann P.

10:24 PM  

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