Friday morning

As the resident doctor has told me the last two mornings, any uneventful night in the PICU is a good night.  Last night was a good night for Anna.  She was able to get some sleep, albeit not much.

Yesterday's MRI confirmed what the surgeons had thought after surgery.  They got most of the large tumor, but a small bit remained.  This is not of any additional concern, however; the neurosurgeon informed us that as long as they get at least 95% of the tumor, Anna's chances remain the same as if they got 100%, especially considering that she will be undergoing some pretty intensive radiation and chemotherapy.

Yesterday afternoon Anna got to see all four of her grandparents as well as Kate and Ethan.  Those visits from close family cheer her up a bit, but she's not ready for other visitors yet, nor are we.  During the day, we're lucky to get 30 minutes without any visitors from hospital staff.  The extent of the support system here at Children's Hospital for kids like Anna is incredible.  We have met SO many people whose job it is to help kids like Anna and families like ours.

The "big things" happening today are regarding Anna's nutrition and communication.  Yesterday afternoon the nurses placed a feeding tube in Anna so that she could start getting some calories and nutrition to help her body heal.  She will have a speech evaluation sometime today to check her swallowing skills.  Once that is done, then Anna can start drinking and eating a little bit at a time.  We realize that she will probably have the feeding tube in for a little while until she can get all of her calories and nutrition orally.

Right now Anna doesn't talk much.  (How many times over the past few years have I wished for that?  Just a reminder to be careful what you wish for :)  She can communicate, however.  Yesterday there was a little concern about whether or not she experienced a rare side effect of this kind of brain surgery in which a person becomes mute for a few weeks.  I think that concern has passed, though, since Anna has talked to me today a few times with words.  Right now her main communication is through hand squeezes, but she surprised us all by using the baby signs for "drink, please" earlier today.  Having a little brother who is learning how to talk has it's own advantages in situations like this.

Anna and I had a relatively long conversation earlier this morning.  From it I surmised that she is fully aware of everything that is going on, and more importantly for the short term, that she is getting a bit bored of lying around and staring at the ceiling.  So we're working on that.  Some options are movies, books on CD, music (which she's been listening to almost non-stop since Monday), games, flash-cards, etc.  The child life specialists here at the hospital have lots of resources for now, but somewhere down the line it might be nice to have some other choices, too.

At the moment, Matt and I are very hopeful.  Anyone who knows Anna like we do knows that she can be a very determined little girl.  We believe that this particular personality trait can serve her well.

Time for prayers

Thanksgiving
Matt was able to rest relatively well in the sleep room last night.
The nutrition component was figured out quickly and easily yesterday and Anna is now receiving adequate nutrition.
Anna is able to communicate with me.  I prayed hard about this one last night.
Kate and Ethan were able to come to the hospital yesterday to spend some time with me and to see Anna.
Thank you, personally, for all of the prayers for strength and wisdom for Matt and me.  When I start asking the doctors and nurses questions, I know the words are coming from God.  There's no way I would be able to do what I'm doing without God's help.

Requests
Please pray that Anna's physical therapy visit today is successful enough so that the speech therapist can assess her ability to swallow so that Anna can drink some water if she wants to.  I know that's a little much, so how about just pray that she can drink water this weekend.
Please pray that Anna is able to get some rest today and tonight so that her body continues to heal.
Please pray that we can help Anna focus her incredible determination skills into helping her heal.
Please pray that I get my voice back.  Because of everything, including the dry air of hospitals, I have lost my voice a bit.  It'd be nice to be able to talk more easily :)
Please pray that I am able to spend the night at home tonight with Kate and Ethan; Kate really needs that right now.
Please pray that Matt's cold that just seems to be starting goes through him quickly and easily so that it doesn't hamper anything with regards to Anna.

We realize that many of you want to help.  Up until now, your prayers have been all we needed.  We're starting to get more of a sense of what we need beyond prayers.  If you're interested in helping, you can contact Cindy Light at Lutheran Church of the Living Christ (cindylight87@gmail.com) or CLM at the McFarland Lutheran Church.  Both will be informed of specific needs that we may have.  Thank you in advance for all of the support and help.

I will close with a quote from the Lutheran Hours Ministries daily devotions.  I signed up for these last year, but honestly haven't been reading them for a few months even though they get sent to me every day.  This morning I opened up the email and found encouragement in the words.  We feel God's presence with us very closely during this journey.

"The question is what will you do when you cannot stand to deal with any more problems and feel overwhelmed by the difficulties of life?


Now I cannot tell what kind of problem or difficulty may be yours. Possibly it is bad friends, or drink, or drugs or, well, it could be just about anything, couldn't it? And the worst part is every time you think you've fixed your problems they seem to come back stronger than ever.

If that is your situation, I am pleased to say there is Someone who can help. Understand, He is not a temporary solution. The changes He proposes are permanent.

Of course, I am speaking about Jesus. He is the One who encourages us to "Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your soul."

Since He is the Son of God He is always ready to help you, always prepared to give you strength and guidance, so you may face the daily struggle. Come to Him in prayer. The Holy Spirit will open your heart, so you may tell the Savior your problems.   And if you're wondering if you can be sure, remember He is your best Friend. He died on a cross to forgive your sins and give you eternal life. What greater proof of love can He offer than that?

THE PRAYER: Lord, I need Your help in my day-to-day problems. Guide me and enable me to find the rest my Savior has promised. In Jesus' Name I ask it. Amen.
  And all God's people said "Amen"!