Saturday, March 3, 2018

11 Years Old Today...

Today you turn 11.  This past year has been a tough one for you.  From the choking on the chicken incident this past summer, to being bullied at the start of the school year, to the concussion and stitches accident at recess, to the 6 day hospital stay post-concussion.  You have come through this storm battered and bruised, but stronger and braver than any mom could imagine or hope for.  You amaze me every day.

Some birthday facts about Noah this year...
1) He LOVES the Blackhawks, so much in fact that his entire room has a Blackhawks theme!

2) He's a HUGE fan of Coyote Peterson! In fact  when we were in Arizona we had to visit the Tucson Gem & Mineral Store because Coyote Peterson had been there. (Don't know who Coyote Peterson is- you can find him here or here)

3) Even though he choked on a piece of chicken this summer, he still enjoys eating it.  2 of his favorite places to eat include Chick-Fil-A and Buffalo Wild Wings.

4) He loves Jesus with his whole heart.  One of his favorite people is the pastor of our church. Last week a clip of Billy Graham played on the radio and his words inspired Noah.

5) He LOVES to build- k'Nex, Legos, Snapcircuits, rocks, you name it and he will build with it for hours at an end, usually while listening to Andy Mineo or The Greatest Showman soundtrack.  Future engineer?

Happy Birthday, Noah James, we love you so very much!

Tuesday, December 19, 2017

Happy Birthday, Ryan!

Happy birthday to this man!  

The man who is teaching Noah how to be a Godly man and that hard work pays off.  The man who is showing Juli how a girl should be treated by someone who really loves her.  A man who knows what the definition of family is and what it means to stand by them when they need it.  Happy Birthday, Ryan, we love you!

Wednesday, September 6, 2017

The Heart of Why We Are Climbing...

"Mom, I'm going to try one more time and then if I still can't do it, we can just get me velcro shoes again."  Juli and I had been sitting on the floor of Kohl's trying on shoes with laces for over half an hour.  She had learned to tie her shoes at the end of last year at OT and at day care (thanks, Ms. Nora!), but we hadn't really practiced much over the summer (my fault).  Juli desperately wanted to have shoes with laces this school year, and I really wanted her to have them too, because the look of desperation in her eyes at that moment was crushing me.  So I showed her again how to tie her shoes.  She took a deep breath and concentrated hard, while watching me tie the shoe the other shoe she needed to try on...and she got it!  She was so excited, she ran to find Ryan and announced that she remembered how to tie her shoes.  She tried it 3 more times, each time with success, and so we left Kohl's with a pair of shoes with laces.

Earlier that day, we had been weeding out her clothes- figuring out what still fit and what was too small.  We came across 3 pairs of jeans.  "Mom, can't we just pass those on? I can't button them and they leave marks on me" (the buttons for the adjustable waist dig into her hips since she's so skinny).  In OT they have been working on buttoning and snapping pants, because Juli doesn't have the finger strength.  "Can you just try them on and see if they even fit you first?", I asked.  So she tried them on and struggled to button or snap (depending on the jeans) them shut.  I watched her trying so hard to do it.  "Mom, how about we save these and bring them to OT so Ms. Stephanie can work on it with me?"  "That sounds like a great idea, Juli."  "But I still don't like how they leave marks on me."  "That's fine, you don't have to wear them to school, but we can just practice on the buttoning."  Fortunately, Juli mainly wears skirts or dresses and leggings when needed, so I don't often have to worry about pants for her.  She does prefer the softer waist bands of sweat pants or athletic pants for the winter months, and I am happy to make sure she has those types of clothing.  My hope is to get her to the point where she can button or snap a pair of jeans, even if she doesn't want to wear them, just so that she knows she can.

Juli is why Noah and I chose to do the Willis Tower stair climb.  Noah loves his sister, and hurts when she struggles.  He has shown such patience with her when she reads or does math.  He showed her that it is okay to listen to books (audiobooks) this summer, and the two of them compare the ones they download from the library and sometimes listen to them together.  Sometimes, Noah will check the book out too, and will sit next to her while they listen to the audiobook and show her how to follow along.  He gets mad when she tells us that she is stupid (I get mad as well) and works hard to point out all the things she does well.  He is her protector, even if they fight.

Juli is why we are climbing.  Please consider donating to our journey up the 103 flights of stairs.

To donate for Noah click here.
To donate for me click here.
Can't decide, donate to Team Juli: the Mighty Minions.

Friday, August 4, 2017

Update #1 on the Journey to 103...

First of all, to everyone who has donated towards our climb to the top of the Sears Tower (I don't think I will ever be able to call it the Willis Tower), Noah and I want to say thank you from the bottom of our hearts.  We are very grateful to and thankful to you for donating for us.

We want you all to know that we have already started training for the climb.  We logged over 40 miles in July- running and walking.  We have been biking, roller blading, and swimming laps as well. We will begin running hills and stairs on the weekends soon.

To those of you who are interested in donating, there is still time!  We don't climb until November, but Team Juli: the Mighty Minions needs to raise $3000 before then, so please consider doing so.  The Shirley Ryan AbilityLab is an amazing facility that helps out so many people in many different areas of their lives.

Here is just one story of the way they have helped someone:

If you are interested in donating for Noah's climb, click here.
If you are interested in donating for my climb, click here.
Can't decide and just want to donate for the team, click here.

Tuesday, June 27, 2017

The Journey to 103 Begins Again...

Two years ago, I did the Skyrise climb.  It was fun and rewarding, but I will be honest, I didn't plan to do it again.

Fast forward to June 14, 2017.  Juli started the extended school year, and I had to get her up at 6:45 because the bus comes at 7:15 (Juli is normally a "walker" during the school year, so getting to ride the bus is a big deal to her, even if she has to get up earlier than most kids- and it was the one thing that helped her to stop crying when I told her that she was going to be doing the extended school year).  Noah got up early too, because he wanted to say good-bye to Juli and make sure she got on the bus safely.  After Juli got on the bus, Noah and I had a conversation, and it went something like this:

Noah: "Mom, I feel bad that Juli has to do summer school.  She's going to miss out on lots of fun stuff this summer."

Me:  "I know, but she can't fall further behind in school.  School is already hard for your sister, this should help her so she doesn't fall further behind in the fall."

Noah:  "I need to do something for her and for other kids like her.  Do they still do the stair climb that you did for the RIC?"

Me:  "Yes, but registration hasn't started yet."

Noah:  "I want to climb for Juli and raise money for her doctors."

Me:  "Okay, let's do it."

For those of you who are not familiar with Juli's medical history, you can read about it here.  A shortened version is that Juli has been diagnosed with Developmental Coordination Disorder along with Sensory Processing Disorder.  This affects how she learns and processes information in and out of the classroom.  To help Juli out during the school day, she receives speech and occupational therapy at school, she meets with a reading specialist and is pulled into small group for math, writing, and reading again.  After school is over, Juli goes to Occupational Therapy every other week for an hour, she goes to math tutoring 3-4 times a week for an hour, and she does swim lessons once a week to help with muscle tone.  This summer, she is doing the extended school year and gets on the bus at 7:15 and gets off the bus at noon.  3 days a week she goes for math tutoring in the afternoon for an hour, and she continues to swim as often as we can get to the pool.
First day of summer school

Juli also has hypermobile joints, which means she dislocates very easily.  Last summer she gave us a scare when just by crossing her legs, she dislocated her knee.  Juli has a very high pain tolerance, and hearing her scream like that was awful.  Her knee did pop back into place, but she spent 10 days in an immobilizer and 5 months in physical therapy 2 days a week.  During the school year her knee dislocated twice, and it tends to "pop" partially out of the joint and then goes right back into place.  We keep an ace bandage in her backpack now, so the nurse can just wrap her knee for the rest of the day and keep it stable until the swelling goes down.

Despite all of this, Juli is a little scrapper and she knows how to enjoy life.  She still loves to jump, even though the risk of dislocating increases.   If she can pick any place to go, she will always pick SkyZone.  Every weekend is a costume weekend, and she will pick a different princess to dress up as.  She never gives up.  When she learned to ride a two wheeled bike last summer, she didn't stop until she mastered it (thank Auntie Jaime).  She may be small but she is MIGHTY!

So why am I writing all of this?  Well, yesterday, registration opened for SkyRise Chicago 2017, and we signed up.  We formed Team Juli: the Mighty Minions (she loves minions).  Throughout the summer, I will be introducing you to the members on our team.  Our team needs to raise $3000 in order to climb, which is daunting to us but I know it can be done.  If you have read this far and are interested in donating, please click here.  Thank you!

Who do we climb for? WE CLIMB FOR JULI!

Friday, April 28, 2017

Happy 8th Birthday, Juli...

My punkin horsie turns 8 years old today!  My how you have grown.  Does anyone remember when you when you looked like this? 
3 days old
And now you look like this!

So much has happened to you this year, where do we start?

 Towards the end of the summer, you dislocated your knee.  You have one of the highest pain tolerances that I know of, so when you start to scream, I know that something bad has happened.  Seeing your kneecap on the outside of your leg was one of the weirdest and more frightening things that we have experienced with you.  Fortunately, it popped right back into place, but it still involved a trip to urgent care, several visits to see Dr. Bueche (a fantastic pediatric orthopedist, by the way), some time in an immobilizer, several months of PT and kinisiotape, and a trip to visit Dr. Gaebler at the RIC who we were due to visit anyway.  Unfortunately, due to your low muscle tone, you are destined to easily dislocate from now on, and you experienced a dislocation at school last week.

You started 2nd grade this year and it has been a bit of a struggle for you.  In January they started getting you even more help for reading and now you are almost to grade level, we are so proud of you!  In February you started getting some outside help with math, and we have seen your math skills improving as well.  This summer you have to do the extended school year, and while you were upset at first to find out you had to go, when given the option to ride the bus or be driven by me, you chose the bus because, "Mom, I never get to the ride bus!"  You still want to be a nurse, and your teachers have said that you always volunteer to take the sick kid down to the nurses office at school.

You love your brother so much and while at times he gets annoyed with you always wanting to be around him, he loves you so very much.  Last week when the nurse called me to tell me you had dislocated your knee, you didn't want me to come and get you, instead you just wanted your brother to give you a hug.  So, the nurse brought you up to his class in the wheelchair and Noah came out and happily gave you a hug.  

You love your daddy so much and he makes sure that every year when Chick-Fil-A does "Daddy-Daughter" Night that the 2 of you go to it.  He also makes sure that the two of you always go to the school dance every year, because you look forward to it so much.  

This year, for your birthday, you asked if you could get your ears pierced.  Your dad and I had been talking about it for a while and we knew we couldn't take you anywhere that used a piercing gun because of your sensory issues.  So, we took you to the piercer who had done my daith piercings (yes, we took her to a tattoo and piercing parlor).  That was the best decision.  Barron took good care of you, letting you take your time picking out your new earrings.  Then he explained what he was going to do and showed you how he made sure everything was clean.  While you cried for a minute, your ears didn't swell or turn red afterward.  You said your ears didn't even hurt once he was done with the needle.  We were so proud of you!

Happy Birthday, Juliana Rose!  We love you so very much!
Our Fashionista

Saturday, March 4, 2017

The First Time I Got Lost...

After my brain injury I went to see a doctor, alone.  I was dumb, I should have taken someone with me, but I was sure I could handle a regular appointment.  I was wrong.  The doctor made me feel so stupid.  I was having difficulty finding words, counting, and performing simple tasks that I was asked to do.  When he gave me a map and told me to get myself to a certain medical facility for an MRI, I was confident that I could drive myself there.  I was always able to read maps well and didn't think I would have any issues with getting myself there.  That was my second mistake.

I became horribly lost on my way there.  Remember, this is in 2002, not everyone had cell phones or gps.  In fact, Ryan and I shared 1 cell phone between the 2 of us, and fortunately I happened to have it that day.  I called him crying, telling him I had no idea where I was.  Ryan looked up the roads on mapquest and tried to guide me back to where I was supposed to go.  Little did he know that I couldn't even follow his directions.  I called my dad- who was in Florida with my mom for my cousin's wedding.  He couldn't help me either, but he had my mom calm me down.  Fortunately I was in the car by myself, so no one except for me heard all the swear words that I was saying.  I ended up stopping at a police station and a police officer got me to the right hospital- where Ryan was waiting for me (he left work to try to find me).  I think that was around the time we realized that I wasn't going to be the same again.  Now, I have to look at my hands to see which one makes the "L" when someone tells me to go left or right (and yes, I'm embarrassed to admit that).

The second time I got lost happened this past fall.  I honestly didn't think it could happen to me again.  We live in the age of technology.  We were leaving the Rehabilitation Institute of Chicago after Juli's appointment with her amazing doctor that we have seen since she was 1.  I have made the drive to and from the RIC countless times, and it's an easy one.  You take I-55 to Lake Shore Drive, take a left on E Chicago Ave, a left on N Fairbanks St, and a left on Superior St and it is right there.  I honestly don't know what happened when I pulled out of the parking lot to head home.  All of a sudden, I realized that nothing about the direction we were driving looked familiar to me, and I knew I had screwed up.  In my head I started saying all sorts of swear words (I couldn't say them out loud because I had both kids in the car), and I had to have Noah dig my cell phone out of my back pack, unlock it, open up Google maps- wait for it to find a signal because of all the skyscrapers, and hit the home button that I have programmed into it.  Then we went for a "tour of Chicago" as we drove home, which is not something I wanted to do just before rush hour started.  Eventually we found our way back to I-55 and made it home.  It was a reminder that I still can't rely on my brain memory to get me to and from locations.  It also confirmed to me, why I want to live in a wide open area when I retire- I can not stand the city!