9 years old already?!?

Today my baby girl turns 9.  Honestly, I can't even tell you where the time went.  The first 3 years of her life were spent in the car going from this Children's Memorial appointment to that Children's Memorial appointment to the Rehab Institute of Chicago and in between all of that we managed to squeeze in all her Early Intervention therapies: speech/feeding twice a week, physical therapy, and occupational therapy.  At the time it felt like it would never end and we would always be living from one appointment to the next.  Then, Juli started preschool and then Kindergarten and things started to get easier...and then harder again as they always tend to do...and then easier again.  Currently we are sitting in the middle of easy and hard.  Juli is almost ready to graduate from OT- what will we do with our Saturday's?  We have been doing OT since Juli was 1 year old, and to think that she is about to graduate from it is so exciting to me!  But this isn't a reflecting blog entry today, this is a birthday blog entry so let's get on with it!

I came up with a top 10 list for Juli...

10) This year you were determined to grow so that you would make the height requirement for the high dive at the pool, and at your doctor's appointment on Wednesday, you found out you just passed 4 feet, which is the required height- bring on summer!

9) You couldn't wait to be in 3rd grade this year, because then you were old enough for Girls On The Run.  You have loved running after school (she must get that from her dad) and are looking forward to running the 5K on Mother's Day weekend with me.

8) The first time we had warm weather, you got on your princess bike and noticed immediately that it was too small for you.  "Mom, this bike is built for a toddler!  Can I get a new bike for my birthday?"  We went to the store last weekend and you picked out a nice and "purpley" bike that had pegs like Noah's so you can ride with us at the bike park.

7) You have your Aunt Jaime and Uncle Bill wrapped around your finger.  When you spent the night at their house, you convinced them to get you 2 candies to eat during the movie... And let's talk about the movie... you convinced them to buy Jumanji.  When it was time to go, you were able to convince Uncle Bill to carry all of your stuff to the car because you were eating a sucker!

6) Just like your brother, you are also obsessed with the soundtrack from "The Greatest Showman".  For months it was all that you would listen to, and now that we own the movie, we have watched it multiple times.

5) You know what you want and when you want it.  Back in February you decided that you were done having long hair and that it was time to cut it off.  No one could persuade you otherwise.  You didn't even blink when the lady at Great Clips cut off 5 inches of your hair.  If I would let you go shorter, you would go shorter.

4) You love to help in the kitchen, it doesn't matter who you are cooking with.  When we were in Arizona in December, you were always close to Grammie helping her with whatever she was making in the kitchen.

3) This year after your IEP meeting, I told you you didn't qualify for ESY (I should have never opened my mouth), and you were so excited.  However, in February after I received the email from school that you had regressed and they were now recommending you for summer school, you took the news in stride.  You may have shed a couple tears initially, but then you were okay with it.  You even were okay with me driving you instead of riding the bus, since you had to be up so early for the bus last summer.

2) You still love to wear your costumes.  Maybe not every weekend and maybe not to church every Sunday like you used to, but there are some weekends when you will dress up in one of your princess costumes for the day.  I will be sad when you stop doing that altogether.

1) You love your brother so much.  When Noah got released from the hospital on Halloween and we both showed up at school to pick you up, he was the first person you hugged and you didn't let go for the longest time.  That is one of my favorite memories.

Juli Rose, you are growing into a beautiful, brave, warrior princess.  We love you so very much!  Happy Birthday, punkin horsie!

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!

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!

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.

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.

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!

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!

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