Saturday noon

Anna and Matt had another relatively uneventful night in the PICU.  Kate, Ethan, and I stayed at home together.  My parents left this morning to go home; my mom is coming back this evening to continue helping out until we have more permanent plans in place.  This morning I got to have a "normal" morning with Kate and Ethan; the three of us needed that.  Melissa, Anna's godmother, will be helping out until my mom gets back later today.

Matt and I have been getting our medical information in stages.  At this point we're relying on what we see in Anna and what the doctors tell us.  Neither of us have done any outside research, nor do we plan to any time soon.  We think that's best right now.

So here's a summary of what we know.  Granted, neither of us are neurologists, but we can get some of the basic ideas.  Some of this may be inaccurate, but it's what we know about Anna's situation right now.

Anna's tumor was located in her cerebellum and was touching the brain stem.  The cerebellum is responsible for muscle coordination.  The balance issues she was experiencing in the week prior to her diagnosis were a result of the tumor.  Her other symptoms (nausea, headache, fatigue) were a result of the spinal fluid building up in her brain (inter-cranial pressure or ICP is the fancy term).  With the removal of the tumor and the placement of the drain on Monday night, her nausea and headache have diminished.  She's still tired, but for other reasons.

Brain surgery is a big deal, for a lot of reasons.  Anna's was additionally challenging because of the exact location of the tumor.  The neurosurgeon is confident that there were no nerves cut or permanently damaged during the surgery.  However, many of the nerves around the site of Anna's tumor were stunned.  The nerve pathways still exist, but they need to be reminded of how to function.  The nerves that were stunned have no connection to cognition.  Anna's personality, memories, intelligence, etc. is still intact.  The nerves that were stunned were the ones in charge of her muscles.  She is going to have to remind her body how to do a lot of muscular movements.  She has feeling and movement in all of her extremities and face, which is great.  However, reminding her body how to work is going to take a long time and a lot of work on Anna's part.  To put it in perspective, it took Anna 6 1/2 years to learn how to do all of the things that she could do two weeks ago.  It will probably take several months for her body to remember all of those skills.

In other words, we're at the start of a long journey.  We appreciate all of the support and offers for help this past week, but Anna and the rest of the family will need continued support in the months come.  We'll keep everyone updated about what those specific needs will be.

Today's plan for Anna is to continue making baby steps in helping her body heal from the surgery.  We hope that Kate, Ethan, and I will be back at the hospital this afternoon and Matt plans on coming home with them this evening.

Time for prayers.

Thanksgiving
Please give thanks that I was able to be home with the other kids last night and this morning.  Like I said before, the three of us needed that.
Please give thanks that my voice has somewhat returned and Matt's cold isn't too bad.
Please give thanks for the wonderful support we have received this past week.
Please give thanks that the therapists who visited with Anna yesterday received clear signals that Anna was not yet ready to drink.
Please give thanks that Kate and I got home safely last night with all of the parts of the Honda.  (Our old Honda has always had issues with its exhaust system and the troublesome exhaust has been getting louder during this past week.  Matt warned me of this and when Kate and I left, and we thought we heard something from the car dragging while on University Ave.  Kate and I prayed that we would make it home with all of the car's parts.  The dragging sound stopped and when my dad checked things this morning, he said that everything was still there.  Hooray!)

Requests
Please pray that Anna is able to better communicate with us each day.  She talks a little more every day, especially if she's feisty about something (like when a nurse was treating her like a preschooler, instead of a bright 1st grader or when I thought I figured out the answer to our 20 questions game, but she had to tell me I was wrong :)
Please pray for Anna's emotional and spiritual state.  Since she can't tell us what she's feeling and thinking yet, we don't really know how she's responding to the situation.
Please continue to pray for strength for Matt and me.
Please continue to pray for Kate and Ethan.
Maybe this is too much information, but please pray for Anna's urination.  For those of you who know Anna better, you know that she's a "holder" when it comes to peeing, and just doesn't need to go to the bathroom as much as, say, her younger sister :)  This characteristic isn't doing her any favors in the hospital.  Please pray that Anna is able to have an easier time relaxing and using her muscles so that she doesn't need a catheter.  I hope that Anna doesn't mind me sharing this kind of information when she's older and wants to look back at this blog/journal.  Oh, well.  We'll cross that bridge when we come to it :)


We're, hopefully, at a more stable point right now than we were a few days ago so I don't plan on updating this blog until sometime on Monday, when there is more news to report.  We are also anticipating meeting with the oncology team early next week to see where we go from here.

We will continue to funnel specific needs through Cindy at church.  Thank you all again for your continued thoughts and prayer.