Tuesday, October 18, 2011

Busy Day Today

Today was a crazy busy day. We arrived at St. Jude at 9:30 and went straight upstairs to be a part of the Christmas video/commercial for St. Jude.  We were honored to be a part of it and Lucy tried so hard.  She gave it her all, but it was exhausting.  My mom got to watch the filming from "behind the scenes" and she just cried and cried.  She said it was very hard seeing Lucy struggle so much.  All she was trying to do was keep her head up and play some hand bells.  But just the simple task of keeping her head straight and sitting up hurts her so badly.  Oh, she has such a long way to go. 

After a short day of filming, speech consult and medicine room visit, we headed to the Target House to start packing up.  We worked for about 3 hours and got almost everything packed and brought home.  One more trip and we will be done! 

(This is Kristen, one of our favorite Medicine Room nurses.  She has ministered to me in so many ways during our journey, including one particular Diet Coke day.) 

Here are some pictures of our previous visit to the Audiologist.  Lucy's hearing had changed ever so slightly.  Nothing that we would be concerned about yet and probably will not equate to anything in the future.  Just something to monitor as we go forward. 

Ms. Stephanie measuring the movement in her ear drums.

 

Listening for the beeps and throwing the animals.  If you notice how her head is thrown forward, that is how she stays a lot of the time.  Her neck is a source of constant pain and we will be working hard to rebuild those muscles. 



Lucy and Ms. Stephanie


Nanny, Lucy and Me at yesterday's B Clinic visit.  No, she did not wear this hospital gown to the clinic visit, but it was our only option after she got sick.


After a VERY long day, we finally made it home.  (Did I mention that I was sick as a dog yesterday??  Lesson learned, I can NOT take prescription pain pills.  EVER.  I vomited all afternoon and the hour drive home from the hospital was the only glimpse of hell I need to keep my life straight forever!)  Anyway, after a quick stop at Target for some rain boots, we got home.  We had a wonderful dinner tonight, all of us at home together, and then Ella and I made pumpkin pie.  I hope the girls grow to love cooking as much as I do.  She read the ingredient list and instructions and I pretty much let her do it all alone. 



Oh, the rain boots?  The are for the field trip I get to go on with Ella tomorrow.  Nanny is taking Lucy to the hospital and I am going to spend some much needed time with my oldest angel.  It rained all day today and the trip is to an outdoor pumpkin farm.  It was 85 degrees yesterday and 50 today.  Its' going to be cold again tomorrow( and very muddy).  Should be fun?!?!

Lastly, Erik and I met with Lucy's doctor yesterday about the scans.  All in all, we are all pleased with the results and were once again reminded of how far she's come.  We won't be sharing a lot of details, as some things we need to keep to ourselves, but Dr. W said she was "happy."  And that's about the best we could expect.  We know that the radiation and chemotherapy still have work to do and more importantly we know that God is not done yet.  He is the ultimate healer and physician.  He is who we are placing all our hopes in. 

Phil 1:6
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.



post signature

12 comments:

  1. Prayers for Lucy. Hope the pumpkin farm is lots of fun.

    ReplyDelete
  2. Continuing to pray.... A little extra prayers are always welcome right?!? Praying Lucy starts eating more and gaining weight!

    ReplyDelete
  3. Pumpkin pies look fabulous. Have fun at HOME!

    ReplyDelete
  4. Will continue to pray for your family. Based on that final paragraph, it sounds like there is still a ways to go, obviously. Praying for peace for your family through all of this.

    ReplyDelete
  5. found your blog a long time ago through another blog...continuing to pray!! :)

    ReplyDelete
  6. Kate,
    I pray daily for your family. I don't have much else to say as nothing I can say will make a difference in how you are feeling. Just know that people all OVER the world are pulling for Lucy (and you too!) You are a great mother and I check your blog daily just to "check on you." May you find some peace as you get settled in at home again.

    ReplyDelete
  7. Although I read your blog each time you post, I rarely comment. (For some reason blogger doesn't like me to comment on your posts!) I'm making the effort today though, because I want to tell you that I've been praying for Lucy and your family from the start. I continue to pray each and every day. I try to pray for the issues that you cover in your blog posts. I know that God is doing a great work in your life and the lives of your family. What's even more awesome is the great work He's doing in the lives of your readers. Probably most of who you'll never know personally. I am amazed at the strength of all of you and grateful for your professions of faith throughout this experience. Thank you for sharing.

    ReplyDelete
  8. Continuing to pray for 100% health.
    <><

    ReplyDelete
  9. Lucy has the most precious combination of your smile and Nanna's. So sweet!

    ReplyDelete
  10. If the Dr. is happy, then I am overjoyed. I've thought of you often in these last couple months since I came across your blog. I've been praying for complete healing for Lucy and comfort for you. God Bless You!

    That pumpkin pie looks delicious!
    Christina

    ReplyDelete
  11. Tears of joy are streaming down my face right now just imagining all of you back together at home! So glad that the Dr. was happy with Lucy's scans. I hope you had an awesome day at the pumpkin patch with Ella! Always praying...

    ReplyDelete
  12. i don't know the reason you needed prescription pain meds so i don't know if this would be appropriate for your situation, but i take them for daily migraines (not headaches, migraines) in addition to having had 4 brain surgeries the past 2 years, 3 of which were for shunts. for some people, just keeping their head still on pain meds helps nausea (don't know the science of it, just know the docs say it helps) and i have prescription nausea meds, phenergan, and there's zofran which i believe isn't nearly as sedating (most people not tolerant to phenergan are knocked out for hours, if not the whole day).

    if you need any advice, i'm not a doctor but i deal with this on a daily basis so feel free to ask, i don't mind personal questions either so don't hesitate if i can be of any help!

    ReplyDelete