"So How Was Anna Doing?

I typically have written a blog post at the beginning of each calendar year to provide others and ourselves with an overall update about how Anna was doing.  I'm going to write this post as if the last few weeks have not happened.  I had been hoping to share much of this information with those who loved and cared for Anna to keep everyone updated, but also to continue to spread awareness of how cancer treatments affect kids.

I recently looked back at the last couple of "How is Anna doing?" posts that I write in January and I'm glad that I have a record of my overall impressions of how Anna was doing at those different points.  When I looked at our post from January of 2018, I was shocked by just how much Anna accomplished during 2018.


Medically speaking, Anna is in a very good place.  At her most recent round of neuro-oncology appointments last February, she was cleared to go an entire year without seeing those doctors.  Her scans have remained very stable since treatment ended and her oncology team is confident that Anna's medical life is stable.  They are also confident that our family knows who, what, and when to ask if we have questions or concerns.

Anna's next MRI is scheduled for Tuesday, January 8, and in February we hope to officially have her labeled as a cancer survivor.

2018 brought about some fortunate and unfortunate discoveries with Anna's eyes.  In early January, Anna's left eye started drifting outwards (again) and her vision just seemed generally very poor.  Because of the relationship we have with Anna's ophthalmologist, we were able to get to the bottom of this over the course of the spring.

First, we learned that Anna's tear producing structures were damaged by the radiation treatments and so her eyes were not creating enough natural lubrication.  This made the surface of Anna's eyes very, very dry.  Basically, in addition to all of her other vision problems, Anna was seeing the world through some very scratched up lenses.

In March (I think?) Anna had plugs placed into her tear ducts to allow the surfaces of her eyes to be lubricated naturally.  I think of it as putting a plug in the drain so the slow drips of Anna's tears can fill up.  By the summer, the surface of Anna's right eye was much, much better, and by the fall, the surface of both eyes had healed completely.

But in the summer, Anna still had difficulty reading the eye chart at the doctor's office.  Again, because of the comfort level of our relationship with Anna's ophthalmologist, we asked questions and discovered collectively that Anna is near-sighted!  Since I got my first pair of glasses just before 5th grade, we're pretty sure that Anna's near-sightedness has absolutely nothing to do with her cancer or its treatments.

At the check-up with the ophthalmologist in December, Anna was seeing as well as she has seen in several years.  The tear duct plugs are doing their job; the glasses prescription is doing its job, too.  Her radiation-caused cataracts are stable, but the one on her left eye impairs her vision to the degree that if we ever chose to pursue correcting her double vision, Anna would first need to have a series of surgeries to remove that cataract, adjust her vision, and then realign the muscles.  We left the appointment knowing that there were options for continuing to correct Anna's vision, but no desire to pursue them for awhile.

During that same "check-up day" in December, we met with Anna's endocrinology team.  Anna's height and weight are following growth curves very nicely, even if the height curve is at around the 5%.  We have adjusted her growth hormone dosage a few times to accommodate her weight and also to see if we can get as much growth into her bones as possible before puberty hits.

Speaking of which, Anna will be having a few blood tests in January to check the levels of different puberty hormones, among other things.  Chances are that her pituitary gland isn't up to the puberty inducing job just like it was unable to initiate her growth.  Anna and I had frank discussions at the appointment with the doctor about what this might mean for her in terms of additional medications and their affects on her body.  It's nothing we can't handle.

We were able to avoid a few other medical appointments on that Thursday in December because we had the comfort and ability to communicate via mychart.  First, Anna is now being followed by a pediatric orthopedic specialist.  During a routine x-ray in May, the radiologist recommended Anna see an orthopedic specialist due to the slight curve of her spine.  We met the doctor in August and he informed us that Anna's scoliosis was very mild, but due to her muscular differences, he'd like to keep an eye on her in case she would ever benefit from wearing a back brace.

Anna had follow-up x-rays the day after Thanksgiving (there is actually a long story behind how it happened on THAT day) and the doctor was comfortable with waiting until the summer for another follow-up appointment.

In addition, we communicated via mychart with Anna's GI doctor.  He is very pleased with how things are going and was also comfortable with waiting until the summer for another follow-up appointment.  Before I share the details about Anna's oral eating/G-tube, here's a side story about that day of appointments.

Thursday, December 13, was probably one of the best appointment days that Anna and I have ever had.  We started with an 8 a.m. check-up regarding Anna's ankle braces and worked together on her social studies assignment (which was fun for both of us) while the braces were being adjusted.

Then, since Anna had expressed an interest in putting together a shoebox of gifts for our local Christian radio station's campaign, we went to Target.  Anna contributed some of her money while we contributed the rest and the two of us spend some time shopping and picking out items for a 5-10 year old girl in our community to open on Christmas.  I am so glad that Anna and I were able to do that activity together.  We dropped the shoebox off at the radio station a few days later.

After shopping, we headed to the eye doctor appointment.  Although we had to wait some (and met a pretty awesome 7th grade girl from Janesville and her dad in the waiting room), the appointment was perhaps one of our shortest ones there, ever.  Anna even made a witty comment to the doctor about the length of the visit as we were saying our good-byes.  During the brief times of waiting, we were able to fit in a couple of the games we brought along.

Between the eye appointment and the endocrine appointment, we grabbed Anna some lunch from McDonald's and had our lunches together on the first floor of the hospital.

Since we had a few extra minutes before the next appointment, we stopped by P4 to see if there were any familiar faces on duty that day.  Since we didn't see many, we checked to see if Lynne was working on the PICU that day, but she wasn't.  At least we tried.

The endocrine appointment went smoothly and we were even home before Kate and Ethan got back from school (a neighbor picked them up that day).

Back to the updates ...

In terms of Anna's oral eating, this kid has made so much progress in the last year.  She began to be weaned off of her g-tube formula last spring and, as of her 11th birthday, no longer required formula as part of her daily nutrition.  We kept up with her pureed foods through the summer and the beginning months of school because there were enough other transitions going on to worry about.

However, in December, Anna and her speech therapist came up with a plan to wean her off of those, too.  Anna was so motivated that she wanted to start the planright away.  Sure enough, after cutting out the first round of purees, her appetite increased and she was able to make up for those changes.  We have hope that Anna will be completely off of g-tube feeds sometime during 2019.

The extent of this news means more for those in the speech/feeding/g-tube community.  When we met Anna's first clinic feeding therapist in the fall of 2014, we asked the difficult question of where all of this therapy would lead.  In short, would Anna ever be able to eat again?  The amazing and experienced therapist we worked with at that time said she didn't know, that her best guess was that Anna might be able to eat for pleasure some day, but she wasn't sure if Anna would ever be able to get all of her nutrition orally.

Anna shot for the moon and, with the support and encouragement of those around her, reached it with this goal.

In terms of Anna's physical skills, this kid has also made so much progress in the last year.  Before participating in her CI Summer Camp during July, she made it clear to those around her that her goal was to use her crutches as her main form of mobility in 6th grade.  The first few times she relayed that goal, whether it was to us or to different therapists, we were a little skeptical, which is pretty humorous since those of us closest to Anna know how much "goal oriented persistence" she can have.

Sure enough, by October, Anna was using her crutches almost exclusively at school.  The only times she used her walker were when she had to walk long distances in crowded hallways (middle schoolers are the opposite of self-aware when it comes to their own bodies, let alone a classmate's crutches), during gym class (when she wanted to move faster instead of more carefully), and at the end of the day when she came out to the van.

At home, Anna often chose to leave her crutches in the van and simply walk around our house unassisted.

We are almost due for a plan of care update with Anna's PT, but since I don't have that data, here's a video I got of Anna during a PT session on December 12 when she was walking on the treadmill.  This video was taken after Anna had already done about 10-15 minutes on the treadmill, with the first 10 or so minutes at an incline.  Luke made a point to get my attention so I could witness what was going on (I'm so glad he did).  My first video didn't turn out very well so I asked Anna to do it one more time so I could send Matt a video.  Of course she agreed.

Again, the extent of this news means more to those in the physical therapy community who knew Anna in 2014 or 2015.  During Anna's last chemo visit in the fall of 2014, I had a frank conversation with her hospital PT during which I asked her where all of this therapy would lead.  In short, would Anna ever be able to walk again?  The amazing and experienced therapist who worked with us beginning in February of 2014 said that she didn't know, that her best guess was that she could see Anna using a walker someday, maybe.

Anna shot for the moon and, with the support and encouragement of those around her, reached it with this goal, too.

Moving on to school.  Anna had a very successful transition to middle school in the fall.  We are extremely thankful that Anna's aide from 5th grade was willing and able to transition to 6th grade with her.  Although this aide will probably not always stick by Anna's side, having her knowledge and experience of Anna made the transition to a whole new team much easier.

Anna's 6th grade team, by the way, is awesome, just as all of her other teams have been.  It didn't take long for our family to create and develop the necessary relationships so that we could all work together to help Anna be as successful in school as she could possibly be.

And succeed she did.  With the proper accommodations (more so than modifications), Anna earned A's and B's in all of her classes during the first quarter.

Cognitively speaking, Anna still struggles in certain areas.  She went through a round of neuro-pyschological testing last spring to check on her cognitive functioning.  Although Anna made some progress with the speed of her processing, some of the same deficits of which we learned in 2015 were still present.  In addition, Anna showed new weaknesses in her executive functioning skills.  However, as my mom has told me countless times, the first step to making progress is knowing what is wrong.

During the summer and fall, we set in place some new strategies to help Anna with her specific executive functioning deficits and have seen improvement.  Many homework assignments and other household activities were approached in our family with more life skills in mind than are probably typical.

But isn't that what the middle school years are all about?  Learning how to learn ... learning how to think ... developing the skills necessary to complete a task from start to finish ...

But middle school is also about friends.

After a few years of trying to figure out how friends fit into Anna's life, she has started to pursue friendships on her own this year.  In addition to her beloved companions from her special education circles, she has begun to get out of her comfort zone and sit with other students at lunch, talking about them at home, too.

It has always been hard to let go of this part of Anna's life, but middle school is also about independence.  We worked very consciously this fall to provide Anna with as much independence as was appropriate.

And then there is her faith.

The confidence and clarity of Anna's faith is unique to a child her age, or to a person of most any age, for that matter.  For a child with significant memory deficits, she often surprises us during morning devotions with what she remembers of the Bible.

Hers is not a naive faith, however; she has age-appropriate thoughts and questions.  Still, she has an uncanny ability to reduce some of the more difficult faith questions down to a succinct explanation.

And she is always so certain ... about Jesus and his love.

Thank you for reading this and allowing me the opportunity to get these updating facts out of my head.  Below are the prayers that we included at the beginning of 2018.  Thank you for praying them.  They were answered.

Thanksgiving
Please thank God for the daily gifts he grants us, especially the ability to spend time together as a family of five.
Please give thanks for the continued positive relationships Anna has with her educators, therapists, family, and peers.
Please thank God for all of the progress that Anna made in 2017.
Please give thanks for the supportive and caring community around us that accepts Anna for who she is and rejoices with us when she makes progress.
Please thank God for the continued insights and wisdom of the doctors, nurses, therapists, insurance employees, billing staff, etc., still involved in Anna's care.  2017 did not go by without their help and experience.
Please thank God that Anna's cancer is considered in remission and than she dodged the bullet with regards to some of the radiation/chemotherapy side effects.

Requests
Please pray that Anna can continue to use her intelligence and determination to make progress in all of her goal areas, both physical and cognitive.
Please ask God to continue to surround Anna and our family with people filled with the fruits of the Spirit.
Please pray for the continuing gifts of love, joy, peace, patience, wisdom, and self-control for everyone in our family.
Please pray that God's love can shine through Anna to the people around her in life.

Shoot for the moon time ...
Please pray that Anna learns to eat completely orally ... a.k.a. no g-tube
Please pray that Anna learns to walk independently.
Please pray for the patience to live contentedly until these things happen. 

Funeral Arrangements

We have chosen for Anna's ashes to be laid to rest at The Garden of All Saints columbarium at our church.

A visitation will only take place on Friday, January 4, from 4:00-7:00 p.m. at the Lutheran Church of the Living Christ, 110 S. Gammon Rd., Madison, WI.

The funeral service will begin at 11:00 a.m. on Saturday, January 5, at the Lutheran Church of the Living Christ.  A brief interment ceremony in the garden for our family, our parents and siblings, and their families, will immediately follow the funeral service.

A luncheon will follow the service in our church's activity center (it's really a gym, but we're supposed to call it the "activity center") for anyone and everyone who would like to attend.  Feel free to bring a game to play with a friend, or plan to play a game with someone new, and spend the afternoon remembering and celebrating Anna.  Memory cards will be available to write down any special thoughts or memories that you would like to share.  We will treasure these.

Here is the link to Anna's online obituary.

After asking for our space during this last week, we would like to be able to see as many people from Anna's various circles who care to attend the visitation, funeral, and/or luncheon.  Please do not think your presence will be a hardship for us; knowing how deeply Anna touched others brings us comfort and joy.

In lieu of flowers or gifts, please consider giving a donation to one of the following three organizations in Anna's memory.

UW Kids Cancer Fund
Make-A-Wish Wisconsin
CI Therapy - A scholarship fund will be set up in the coming months in Anna's honor to provide financial assistance to kids who need it so that they can participate in the clinic's Advance therapy sessions ("CI Summer Camp").  If you would like to contribute to this fund at this time, please make checks out to the Lutheran Church of the Living Christ (or LCLC) designated in the memo line to "Anna's CI Scholarship Fund".  These gifts can be mailed or delivered to:

Lutheran Church of the Living Christ
110 N. Gammon Rd
Madison, WI  53717

Thank you, everyone, for the gift of time and privacy these last several days.  We have had peace and have been able to find comfort and joy in each other.  We have had people to lean on and to hold us up when we need it, and they are willing to carry us for as long as it takes.  We have been able to experience God's presence in our life.

We are okay.  We will be okay.  We are all sleeping (some of us with the benefit of over-the-counter sleep aides, others of us with the assistance of prescription strength sleep aides), and are able to function.

Please pray that we have strength and wisdom in the coming weeks.  Please pray that we continue to have a Spirit-filled home.

"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.  Against such things there is no law."  Galatians 5:22-23

This mom's reflections

This is not the way Anna's story on earth was supposed to end.

We always knew there was a possibility that something could happen, but we were getting very comfortable and confident with life.  We were looking years ahead and pondering the possibilities.

This is so, so, so, so, so unfair.  On so many levels.

This is already hard.  And this is going to be hard.  For a long time.  For a lot of reasons.

But ...

The last four and a half years have been a gift.  We recognize that.  We thought we were going to lose Anna several times in 2014, but we didn't.  As she used to tell me, she would have liked to meet Jesus that spring, but she's glad that she got to be with her family some more.  I will forever treasure the time that I was able to spend with her, probably more time than most moms of 6-11 year olds usually get to spend with their daughters.

Anna probably shouldn't have survived at all back then, at a few different moments and for a variety of medical reasons.  But for whatever reason, God had other plans for her life and the impact it would make on those around her, including us.

I learned a lot from Anna during this incredible, soul-filling gift of time.

First and foremost, I learned that in the end, it really is all about Jesus.  When everything else falls away, our faith in our Creator and our Savior is what matters most.  Not some nebulous "god", but the God of the Bible.  I wholeheartedly believe that part of God's plan for Anna these last five years was to share that message with as many people as we could.

I learned to be more thankful.  Whenever Anna would chose to pray after morning devotions, she would always be thankful ... for another day ... for a warm home ... for good teachers and schools ... for her family ... for plentiful food ... for good doctors and therapists ... for Jesus.

Anna also taught me that after our faith in and our relationship with Jesus, the next most important parts of life are our relationships with those around us.  It doesn't exactly matter what route you take to develop and strengthen those relationships, it just matters that you do.  Don't let the end result get in the way of the gift of time together.

For Anna, the best thing was spending time with people.  Whether playing games, playing pretend, bantering back and forth with adults, talking with babies and parents in waiting rooms, participating in discussions with classmates, she loved interacting with people.

Anna's experiences with brain cancer made our family's world so much larger.  When I think of the number of wonderful people who are part of our life, many of whom we had never met 5 years ago, as well as the renewed depth to relationships we had prior to her diagnosis, my heart is overwhelmed.

I used to refer to those that interacted with Anna in the various aspects of her life as her "teams".  No longer will I think of them that way; they will forever be our family.  Our medical family.  Our educational family.  Our therapy family.

Our church family has always been referred to as just that, our church family.

Each of these families will feel Anna's loss deeply; there will be a big blank space in their calendars and in their hearts.  Anna had an impact on many, many people.  None of the holes in their lives will be as big and deep as the ones in our lives or in the lives of our extended family, but others will grieve, too.

It didn't take long for Anna to work her way into someone's heart.

We met the ER attending physician sometime in the late afternoon/early evening on Thursday.  I had referred to him via texts to Matt as the "good" doctor downstairs.  Before Matt and I left the hospital around 3:30 a.m., this doctor was up in the PICU checking in with the care team upstairs.  His eyes were red as he sought me out to give me a hug.  We hadn't even known him for 12 hours.

Others we have known since February 3, 2014.

On Friday morning as we walked down the hall of the PICU with Kate and Ethan, we saw Dr. Iskandar sitting at a computer console.  (Anna and I would run into Dr. Iskandar almost every time we were at AFCH ... seriously!)  By the time we reached Anna's room and were getting Kate into an isolation gown and mask, he had learned what happened and caught up to us.  His reaction was probably the same as most everyone's.

"What?!  No!  Why?!  How could this happen?  How could she get sepsis 4 years out of treatment?" 

From this incredibly talented, experienced, and widely respected man, we saw a glimpse of the real emotions under his tough exterior.

It didn't take extreme medical moments to create these bonds, however.

Since Anna's mychart account was deactivated early on Friday morning (yeah, that was fast), her care staff had limited ways to contact us, but some did.  On Saturday morning we received a call from Anna's endocrinologist, whom we had just seen the previous Thursday for a 6 month follow-up appointment.  He was out of town, but had learned of Anna's passing and wanted to share the condolences of his entire staff, doctors and nurses alike.

Another treasured member of Anna's medical family confessed to me on Sunday night that she was in her car on her way to our house on Friday night just to give us a hug, when traffic was delayed by 45 minutes due to an accident.  She took that delay as a sign from God that she wasn't supposed to come that night :)  Although it was comforting to know that she tried, we were WAY too tired and raw to have appreciated the encounter.

And those are only a few of the many people from Anna's medical family.

Some people in these different families had as deep of an impact on Anna and on us as we may have had on them.  When Anna's physical therapist asked Anna what she was thankful for back in November, without missing a beat and without a hint of sarcasm she said, "That I get to spend every Wednesday morning with you, Luke."

I, too, will miss our special CI family in the weeks, months, and years to come.  I have no words to express how deeply I will treasure all of our CI experiences.

The list of people from our school family that I emailed on Friday morning was long, even longer than I anticipated when I first started compiling the addresses.  And it didn't even include a small fraction of those who have interacted with our children at school in the last five years.  Anna's last day of school on Tuesday included taking a math test, participating in gym class, and decorating her secret pal's locker with help from her aide, among other things.  What a fitting way for our kind, hard-working, self-less math-nerd to spend her last day at school.

And then there are the friends.  Our friends, Anna's friends and acquaintances, Kate and Ethan's friends.  The list just goes on and on.

In my head I know a lot about grief.  But knowing in my head doesn't make any part of it any easier for my heart.

At least our brains and bodies are familiar with the waves, both sad and happy.  We will let the waves of grief wash over us when they come, but not feel guilty when they pass and we can find peace and joy again.  In fact, the tsunami caliber waves of emotion have already begun to subside.

We know that many of the logistics of our life will become a lot easier very soon.  However, having less to deal with may not exactly be a good thing; that will simply make the emptiness and void that much more apparent.

We feel in our hearts that there was something in the last few weeks of Anna's life that finished her purpose.  Some event or interaction that put the final stroke onto the picture of her life.  Perhaps that is why her life ended so suddenly and swiftly.

We also feel in our hearts that Anna has been spared many trials that would befall her as she grew up and began to recognize more clearly the extent of her limitations.

Anna's spirit was simply too pure and precious for this world.

The Gold Hope Project

Sometime in September, we learned of The Gold Hope Project through my college friend Gretchen, the photographer who took pictures for our family during the summer of 2014.  Gretchen had recently become a photographer for the project.  We contacted Gretchen and, since we had been hoping to get some updated portraits of our family, figured out the details to set up a family session through the Gold Hope Project.

Although the attitudes of our family on that particular day in late October weren't exactly what we were hoping for, Gretchen worked her magic and we came out of the experience with some beautiful photographs.  These pictures mean so much more to us now.

 

  

 

Sad news

Many of you may have already heard this news, but if not, we apologize that this is the way in which you are learning.

Anna passed away late Thursday night.

Monday and Tuesday were both typical days in Anna's life.  School, homework, holiday preparations, and a little bit of play thrown in for good measure.  The only minor medically related news was that she mentioned a slight sore throat on Tuesday morning, but by the end of the day it was gone.

Wednesday morning Anna work up with a nasty earache.  We gave her some Tylenol, told her to get the day started, and we'd see how things went.  The medicine kicked in, she got ready and ate breakfast, and we went to CI for her weekly PT session.

During PT she was having a rough time and was obviously feeling sick.  I scheduled an appointment at our primary care clinic for 9:25 and did the necessary communication regarding the change of plans for the day.  Anna's PT and I gave her the option of bailing out on her therapy session since she was feeling so crummy, but she wanted to keep going.  Then at about 8:30 a.m., she asked to stop.

We went to the clinic appointment, but the doctor we saw said her ears were clear, but thought Anna was probably starting on an upper respiratory infection.  So we went home to ride out the virus.

The rest of that day and night were tough, but typical for the start of a nasty virus.  Fever, aches, low appetite, etc.  We made a few calls to the nurses on call, and were referred back to our primary care clinic on Thursday morning.

At that appointment, the doctor thought she had influenza, but ordered some lab work anyway.  We went back home.  Around 2 p.m. a nurse called us and based on Anna's lab work and some new symptoms, we should go to the ER for IV fluids.  We chose to go to the American Family Children's Hospital.

Until about 5 or 6, we all still thought it was a bad case of influenza.  About 6:30, things took a serious turn for the worse and Anna was transferred up to the PICU.  Although she wasn't doing very well, until about 1:00 a.m. we still thought that whatever was wrong could be "fixed".

In the end, Anna was surrounded by me, Matt, and our pastor.  We brought Kate and Ethan to the hospital when they got up on Friday so that they could say whatever good-byes they wanted to say.

We are left with more questions than answers at this point, but may have some of those medical questions answered in the coming weeks.

We assume that Anna had an infection of some type (viral or bacterial) and that the infection spread rapidly.  For whatever reason, her body just wasn't up for this particular fight.

We suspect that Anna had some underlying condition, possibly related to her heart, that made her more susceptible to the course this infection took.  We suspect that this underlying condition was a result of her treatments.  These suspicions have not been confirmed by any medical professional.

We thought hard about whether to share this information before Christmas, or to wait until after the holidays.  We decided that the best way to honor Anna's memory at this point was to tell everyone, and remind people not to dwell on the sadness.  Please look for some way to see a special joy in the events of the next several days, just like Anna would.

We KNOW with certainty that Anna is in heaven with Jesus surrounded by all of the believers in Him who have gone before her.  In fact, I'm guessing that there were quite a few waiting for her with wide open arms.  We KNOW that Anna is more whole and more free than she ever was here on earth.


We are asking for privacy at this time.  We see the emails, texts, messages, and cards.  Thank you.  They do mean a lot.  Just please don't expect a response.  We will reach out to individuals as needed.  Awhile ago, a friend shared with me the idea of the "ring theory".  It's a good concept to keep in mind during times like these.

We are tentatively planning for a service on Saturday, January 5, but do not have any details in place at this time.  We will share that information sometime next week.

Please pray that our family has peace and that we find comfort in each other.  Please pray that we have people to lean on and to hold us up when we need it, and that they are able to carry us for as long as it takes.  Please pray that we experience God's presence in our life.

Christmas Preparations and School Happenings

We made it through the week and the weekend, and some us of still have smiles on our faces.  After spending most of Monday, Tuesday, and Friday trying to catch up on life at home, I was able to tackle the weekend with a decent attitude.  By Sunday, the warmish weather and sunshine was helping us all end the weekend in a good mood.

Coming up sometime in the near future, I'll give a comprehensive update about Anna's medical and therapy life especially in light of her appointments on Thursday, but today is not that day.  For now, all of that information is tucked safely in my brain.

Instead, here are some fun pictures of our family's adventures of the last week!

Friday morning was Ethan's kindergarten gingerbread event.

Although Matt and I were unable to attend, Ethan's teacher is great about posting pictures and videos to Class Dojo ... so here is Ethan and his masterpiece.

We're glad he got his creative fix on Friday because our family gingerbread creation at church on Saturday had a little more structure to it ...

We decided to do a gingerbread forest, including a log cabin, this year.  Although the kids did a good job helping with various aspects, it turned into more work on Saturday than we were expecting.  From the experience, we learned that we need to have a better plan in the future and do much of the prep work prior to the actual gingerbread event.  In fact, I'm hoping that the "plan" is solidified prior to December next year, since enough else happens during the month of December.

The weekend also included our church's Christmas program(s).

 

This year, the younger children sang traditional carols in between different readings from the Bible while after the main service the youth (of all ages) performed a detective skit based on the old Dragnet series.

Ethan was an angel (at least at church).  After he chose his costume, he wanted to make sure that boys could be angels, too.  We were quick to assure him that some of the only named angels in the Bible were men.  He now knows to listen for the names Gabriel and Michael during Bible readings.

Kate was Mary, and did a wonderful job playing her part (which included no speaking lines).

Anna was one of the shepherds as well as "newspaper girl" during the last scene of the youth play.

 

Each year we marvel at the talent of the adults and youth in our congregation.  Many of the members in the audience are encouraged to see so many youth take on such an active role in this production.  This year we were told there were more than 30 people involved!  (although a handful of the actors were adults)

When not at church, Anna was mainly doing school work this weekend, although she did manage to have a little bit of free time on Sunday afternoon.  She had some make-up work to do after being absent on Thursday due to her doctor's appointments, but the middle school teachers are also trying to get in their last projects/quizzes/tests prior to winter break.  We still try to use these experiences as teaching opportunities for larger life skills (how to study, how to organize and plan, how to read fiction and non-fiction texts, etc.).  At least (so far) Anna is motivated to work on schoolwork.

And now we have only a few more days of the school routine before we can have a nice, relaxing break!

Gearing up for Christmas

Now that we (parents) are mostly recovered, we are working hard to pick up the parts of life that fell through the cracks while we were sick ... you know, all of those Christmas preparations that typically happen in December.  It hit me on Friday evening that we were about two weeks behind in regards to Christmas prep.  Oops.  At least everyone still had food to eat and clothes to wear while we were sick.


Thursday morning last week we woke up to gifts from St. Nicolas.  Everyone received the traditional candy and ornaments, with the kids receiving some new pjs as well.  The family gift was a couple of classic games that we didn't yet have in our collection.  Connect Four has been played at least once a day by Anna and/or Ethan; we attempted to play Life on Friday evening with mild success.  I'm not sure that a Friday evening is the best time to try a newish game.

Friday I landed a great sub job as an aide in Anna's school.  The timing worked out nicely so that Matt took all the kids in, but I was able to to collect Ethan and Kate, run them home, and then go back to get Anna at the end of her day.  I think I enjoyed that position the most thus far; perhaps there is still a middle school teacher buried under all of the other responsibilities this mom has.

The weekend was filled with plenty of catching-up kinds of activities for the family.  Christmas shopping and gift making were high on the list of priorities, with household tasks and homework close behind.  The kids were able to set up their Christmas trees on Saturday morning, and by Sunday night our main tree was up with new lights on it.  The ornaments are still in a box, though.  I keep telling myself that it will get "finished" soon ...

This week, thankfully, has started out smoothly.  With some of the extra events anticipated at the end of the week, I made a conscious decision to not sub at all this week.  It's hard to pull myself away after I learned that Kate's classroom didn't have a full-day sub last week one day when her teacher was sick; there's a real shortage of subs right now.  But, I need to make sure I am aware of keeping all aspects of our life in balance.  I keep reminding myself that there will be plenty of opportunities to help at the schools the rest of the winter ... this week was just not a good week for our family.

One of the extras coming up this week is the monthly 4H meeting on Thursday, which comes after a long day of appointments with Anna.  The scheduling and coordination of all of these various appointments has taken up much time and energy on my part, but in the end, all of her specialist 6-month check-ups will happen on the same day.  Hooray!

Wednesday and Friday also have Anna's regularly scheduled therapy appointments in the morning, but with a few other errands and plans later in the day for mom.

I keep telling the kids that once Christmas break arrives, we will have more time on our hands than we know what to do with.  Until that day (Friday, December 21), we will continue to have a full life.  Maybe I'll think to take some pictures during the days ahead!

Making it through

The virus that plagued Ethan and Kate during Thanksgiving weekend hit the parents last week.  (So far Anna has either not caught this one or proved herself to be immune!)  Matt worked from home on Tuesday - Ethan's birthday - so that he could rest as needed, but had to plow through the rest of the week at work.  Almost 10 days later, he's still having trouble with a cough.

Mine hit me on Wednesday night on my way home from at meeting at church.  I did my very best to rest on Thursday and Friday, but there were plenty of things that "needed to be done" - grocery shopping and Anna's speech therapy were at the top of that list.  Almost 10 days later, my sore throat only bothers me at night and my sinuses are slowly, slowly, slowly starting to feel less pressure.

Kid germs ... yuck.

I'll reiterate that there are now about  total 1,500 students/staff that have direct or indirect contact with our children in the three schools they attend.  That's a lot of germs to be exposed to.  Chances are if there's something going around McFarland this winter, it's going to hit us.

Since it was the first weekend in December, that meant that our community celebrated Christmas in the Village this past weekend.  As our family now participates in 4H activities, we had plenty of events over the weekend ... bell ringing for the Salvation Army on Friday night, Christmas shopping at the Village Hall on Saturday morning, brat fry and bake sale on Saturday mid-day, all in addition to a birthday party for Anna to attend on Saturday afternoon.

Let me also add that the weather on Saturday was not exactly cooperative for an outdoor brat fry and bake sale ... 35-40 degrees, windy, and rainy.

But we all made it through and have a few more memories to add to our stash of family holiday memories including our little crew collecting donations from almost every patron of Walgreens during our bell-ringing shift (I sure hope they enjoyed the energy and carols of this group) and meeting the local State Farm representative while Kate and I went into his office to warm up during our cold, cold shift at the bake sale.  He's a nice guy.  He makes homemade cheesecake every year to hand out during the Christmas in the Village celebration; it's good :)

Sunday was church and the first set of Christmas pageant practices at church.  Then the family worked together to do some of the home tasks before some of us watched the end of a pitiful performance by the Packers.

The Sunday preparation was in part due to the fact that I subbed on Monday at the middle school, this time covering an 8th grade math class for a former co-worker.  This was my first experience subbing as a classroom teacher, instead of support staff.  The day reminded me of many of the good parts, but also some of the more challenging parts of teaching middle schoolers :)

Our kids are working through their December experiences at school.  Anna still works hard and has enjoyed being able to share some of what she is learning with us in the evenings.  But, school takes its toll on her.  I was reminded of this again when I joined her at her locker on Monday after my position in 8th grade; her fatigue was extremely apparent to me.  I usually don't see her until she's on her way out the door and excited to see me.

Kate is still doing well, but we have had several conversations this year about interpersonal relationships, both with friends and with group work.  She is growing up a lot this year.

Ethan has been struggling lately with going to school.  He seems to be fine once he gets into the routines of school, but he has had an especially difficult time saying goodbye to me some mornings.  I remember both girls going through stages like this in kindergarten and hope that Ethan is able to work his way through this stage quickly and easily.

Even though it is December 6 (St. Nicholas Day!), we still have very few Christmas decorations out.  The Advent wreath and calendar, at least, made their way up from the basement on Sunday.  Today was the first day that I felt like my energy was almost back to normal so now some of the boxes of decorations are at least out of storage.  Maybe we'll get the tree set up soon!

Happy Birthday, Ethan!

Ethan James Mischnick turned 6 years old on Tuesday, November 27.  This child's world has grown a lot bigger in the last year and not only is he being impacted by many more people, but he is also having an impact on a greater number of people as well.

Ethan is an energetic, thoughtful, humorous, inquisitive, social, and sometimes ornery fella.  He continues to enjoy all things mechanical and musical, with a growing interest in using "real" tools to build.  He also has embraced the idea of drawing pictures and writing words/stories to be able to communicate what is in his mind.  Please refer to the photo below as a prime example ... Ethan chose to write this independently during his rest time at school ... We're not exactly sure what it's supposed to sound like, though :)

Ethan still has some work to do on his emotional control and his impulsivity when he is upset, but don't we all?  He also could stand to improve his cleaning up of one project before beginning another, but again, couldn't we all?

Ethan's birthday celebrations began on Sunday, November 25 with a birthday bowling party.

We had given Ethan a variety of options of how to celebrate his birthday this year, including doing something just as a family, but our social boy opted for a birthday party.  We're learning that there are different options for November parties than we have always had with the girls' summer parties.

The bowling alley party was a good fit for us.  Low key, low stress, lots of fun.

Ethan invited his whole class along with some 4H friends, neighbors, and church friends.  He asked his guests to bring donations for Kadlec Ranch Rescue (where we adopted Rusty), but ended up with a few gifts, too.

Anna and Kate both enjoyed themselves, as well.  Anna has some help from a church friend while Kate was responsible for taking most of these pictures!

When not busy with the photos, Kate had a stellar performance with bowling that day.  She and one of Ethan's classmates tied for the highest scores ... 102!

Pumpkin cake was enjoyed by adults and kids alike before the event wrapped up nicely.  What a fun way to celebrate our boy.

Ethan's actual birthday went well, too.

The family woke him up by singing "Happy Birthday"; he was able to open gifts from family members in the morning; and the day ended nicely with pizza and pie.

Ethan even had Mom visit him on Tuesday for lunch and Dad bring him McDonald's for lunch on Friday.  But, he was disappointed about going to school just about every morning.  After having almost a week at home due to his illness and then Thanksgiving, school lost its novelty and the boy has grumped about going.  I remember the girls going through a similar funk during the winter of kindergarten (and maybe 1st grade, too).  I'm sure we'll get past it, but it makes for some challenging mornings.

In the meantime, we will enjoy Ethan being 6 years old!