Student of the Month

The breakfast for the Students of the Month, yesterday, was great!  I recorded it with my iphone, but am not being successful at sharing it with everyone.  So, I will share what Aly's teachers had to say about Aly. Each team of teachers, I believe there are 2 teams per grade and also teams for ALB class teachers such as music, art, etc. chose a Student of the Month.  Aly's grade level teachers nominated Aly for the award.  Here is what they had to say:

"Team 5A is thrilled to present Aly Juntunen as our student of the month.  Aly is a very ambitious young lady who desires to do well in life and appreciates quality in all things.  This is very evident with the effort she puts into all her academic classes.  Aly is very creative and a self advocate when it comes to her studies. She is not hesitant to ask questions or help others in need.  Aly also has a very positive attitude and a straight forward 'I call it as I see it' demeanor.  Although Aly may not be big in stature, she is definitely a giant when it comes to personality and achievement.  Congratulations Aly!"

Yep, that is Aly!  Thank you teachers!  Watch for all the students in the local paper!

Tuesday, the pool man came out and we figured out where the pool is going.  He spray painted our grass with the dimensions of the pool, we aren't going to have much yard left, which is ok with Kevin and Tom...less to mow!  They are hoping, if the nice weather continues, to be installing it in a couple of weeks. The above ground pools take about a 1/2 day to install, then we have to fill with water, they come back and install heater and filter and the gate around the top, then we are good to go!  I hope it stays nice from here on out so we'd have a nice long pool season!

The Cirque Du Soliel, Michael Jackson Immortal, show was good last night!  We are all tired and we were all hoping for more acrobatics in the show, but we enjoyed it.  Michael Jackson was a creative genius and his songs are fabulous stories.  It was more dancing than anything else,  but the dancing was impressive.  There was one man, in the show, who was missing a leg and had crutches to help him dance.  It was truly unbelievable what he could do.  Several times he even danced without the crutches.  Very cool to see.  Aly is a new Michael Jackson fan, especially after seeing their version of Thriller.

That's it for now!

Busy week!

Aly is doing good. She hasn't had one of her face episodes for a while. She continues to have jaw locks, at least one a day, but that is less than before.
Today, Aly met with the district's special education vision expert. She is going to start working with Aly through the end of the year. Today she took measurements so they can get a white cane for Aly. Aly has decided she needs to use one. It was hard to make that decision, but it is in Aly's best interest. She continues to occasionally run into things and it should help her navigate through the busy halls and other busy public places. They are also teaching her to use a word processor. Our last encounter with the neurologist brought up the fact that Aly has trouble writing when she starts to get tired. Hopefully, these tools will help her gain more independence.
Tomorrow, Valley Pools is coming to inspect our yard so we can proceed with Aly's Make a Wish wish. Yes, we will soon have an above ground pool in our yard! Aly is excited.
Wednesday, we have 2 great activities planned. First, for those of you not on Facebook, Aly was chosen as one of the STMA Middle School East's Students of the Month! She was so happy! She was beaming! We were thrilled and proud! She gets to attend a breakfast on Wednesday morning. Wednesday night, we have tickets to see Cirque Du Soliel's Michael Jackson show, courtesy of Make a Wish. We are looking forward to a long overdue family evening.

We are also trying to come up with something fun for Aly's birthday and are planning Tom's grad party. I just received his announcements in the mail. It is becoming a reality, ready or not!

We continue to ask for your prayers for all kids suffering from cancer. We heard news today, that another 5th grader was just diagnosed with a brain tumor at Aly's school! Please continue to pray that a cure will be found soon! Knowing what we've been through it is hard to hear about other families just starting a journey that no one should have to go through!

courage

The best word for any person who has to fight cancer is COURAGE.  At the Children's Hospital, kids fighting cancer receive courage beads.  Aly has been collecting them since her first day of treatment.  This is her collection, 294 beads.  Aly and I took the time to string them together this past weekend and then I sewed them down into a shadow box frame.  We purchased the big black heart beads to separate the chemo rounds and surgeries and radiation treatment. There were six rounds of chemo, then the brain surgery, then her MRI/Spinal tap, then radiation treatment and finally the surgery to remove her IV port and stomach tube.   Each color bead has a different meaning.  Her journey starts in the middle and circles around to ALY.  If you look closely, right at the beginning of her journey is a "happy birthday" bead.  Not a nice birthday gift!  We are hoping, this year, that her April 11th, Golden Birthday, will be so much better than the last!  To name a few of the beads, the white are her doses of chemo.  The yellow are days in the hospital.  The black are needle pokes.  The white cubes with hearts are trips to the emergency room.  The faces are the two times she lost her hair.  The light green and white are radiation and x-ray/MRI's.  Yes, it has been a courageous battle.  We are so grateful and blessed that Aly is still here with us.
I may have said this before, but kids who fight cancer have a special gift.  They touch the lives of others, somewhat like a rock star.  They make you happy, they make you cry, and they bring a community together.  Yes, definitely like a rock star!      

I had to share this fabulous picture...We received a CD, yesterday, with a copy of the picture they took on the Rally Day in January.  We had already received a beautifully framed picture that is up on our wall!  Thanks again to Zahler Photography for donating their time and talents in taking the picture.  Thank you to the wonderful students and staff who supported Aly and our family by purchasing shirts and wearing blue that day!  What a wonderful sight!

intentions

It has been my intention to get on here sooner, rather than later, but now that things have started to come closer to our old normal, I find myself focusing on other things.  That is good, right?  No news, is good news...We've been turning part of our focus to Tom, who is graduating this year.  We have a lot to do!  We will be spending part of spring break in Nebraska to check out the University of Nebraska, Lincoln.  I also need to start all the other things that come along with graduation!  Busy, busy...

Aly continues to make progress on getting back to her old self, as much as possible.  The jaw locks and facial muscle spasms continue to become fewer and farther between.  YEAH!  She is also gaining weight for the first time since this whole journey started.  She is up to 64 pounds.  She has NEVER been 64 pounds.  That, alone, makes me so happy.  She is eating great, some days I can't believe how quickly she eats!  Close friends and family know that at some points during this illness Aly used to take about an hour to eat a very small meal.  She used to chew each bite for what seemed like minutes.  She is not doing that anymore!  Last night, we had mac & cheese and mini corn dogs.  One of Aly's favorite meals.  She had seconds!  and she's been having seconds at many meals.  This was unheard of just months ago and pretty much for the past 2 years.  It makes me giddy!  :)

There are things I am hoping she will still make more progress on.  Her energy level is very slowly increasing.  She still seems to tire during activities and I'm not sure if that is due to her body chemistry or if it has to do with her eye sight.  I have so many questions for the Endocrin doctor.  I can't wait until the April 2nd appointment.  I think we will also be discussing growth hormones.  Aly is anxious to start growing.  She is not anxious to start the medications needed, but she is quickly falling behind her peers in the growth department.  We cleaned out some closets this weekend and I kept asking her, "Do these shoes still fit?"  Her reply was, "Mom I haven't grown for the past year."  She is also frustrated with the time it has been taking to get her hair back.  It is slowly coming in but there is still a circular patch on the top of her head that is taking its sweet time to fill in.  She mentioned, the other day, how she has been called a boy quite a few times.  Because she wears the hats, and any time she is dressed casually in sweats, it creates that confusion.

Progress, is progress no matter how slow it is...