Friday, September 30, 2011

Kids on the Move

That's right - KIDS, plural, on the move!!!

Ava has been grabbing her toes and rolling to her right side for a few weeks.  She has been getting physical therapy help on Monday's and Wednesday's most weeks. This past Monday her PT had her roll down a big foam wedge, much to mom's shock and fear, but she did it twice with flying colors.  On Tuesday, she went back to pediatric surgery to remove the PEG tube (that stuck out of her belly pretty far in a loop shape) and replace it with a button (a tube that is more flush to her belly).  On Tuesday night, she did something similar to this:

These were taken on Thursday night.  On Tuesday night she had scooted herself off of her blanket by 90 degrees and was laying flat on her belly (her right arm had moved out from under her).  I was in the kitchen and she started crying.  I came in to find Maddi looking at Ava, who was in a completely different spot!  Ava has just turned 7 months old - way to go Ava!!

Maddi has started a gymnastics class and absolutely loves it.  We have very tall kids and Maddi is by far the tallest 2 year old in her class, but Daddy says she is also the best listener ;-).

This is Maddi on her way to her first class.  She kept saying, "Mom, I excited".

Mason has also started a gymnastics class.  He is in a class with  4 year old boys, even though he doesn't turn 4 until December, and is doing a great job.  He listens to Coach Derek very well and Mom and Dad don't go to the actual class with him!

This is Mason before his first class. Since I couldn't go into the class with him I had to get a picture through the glass.

Tuesday, September 20, 2011

Too much fun for words

I attempted to write a detailed blog about the last was becoming ridiculously here are some photos of our past month with a few wordy captions!

Family Reunion in Ludington, MI.  Newest family members since 2010 Family Reunion - Odetta (sleeping in stroller) and Ava (sleeping in my arms).

Uncle Jeff (Ava's Godfather), Ryan, and Ava
Aunt Tami, Ava's Godmother, wasn't feeling well.

Dad, Mom, and Maddi 
We stood in for Maddi's Godparents, Uncle Chad and Aunt Katie, who live in Arizona.

Grandma, Dad, Mason, Mom, Maddi, Ryan, Uncle Jeff, and Ava
Maddi after the ceremony

Yummy cake

Maddi carrying Daddy's beer bottle!

Beach Bum

The boys kayaking


Ava after her gtube surgery at the end of August.  Her surgery went very well and she only had to stay overnight for one night.  She will soon change from a PEG-tube (needs to stay looped out of her belly) to a button (more flush with her belly) in a couple weeks.  Notice what's missing from her face - no more tube in her nose - hooray!!
First day of preschool.
Mason's second year and Maddi's first year.

Friday, August 19, 2011

Maybe we really do have a natural athlete in the family?!

Last night I took Mason to the Mott Tigers Event: Keeping Kids in the Game. It was a benefit for children's health and youth baseball. It was a bittersweet event for me because this was the first indication that I really had to accept that we are a "Mott Family". Even though Ava is not terribly sick and doesn't have long stays at Mott, I can no longer deny the fact that Ava sees 7 doctors and 2 therapists (as of my last count) and is a "regular" patient of Mott. Mott does an exceptional job of including the whole family by providing fun opportunities for everyone. Since Ava is too young to enjoy a baseball event and Maddi is a little too young to stay up until midnight, Mason and I got to enjoy some mom and Mason time.

It was important to me that Mason understood why he got to go to this fun event. I told him on our way there that the nice people at Mott know that when Ava is sick or needs to see a doctor it means that Mom and Dad sometimes have to be away from him and Maddi. This is their way of helping Mom spend some special time alone with him and later we will spend some special time alone with Maddi. I don't think he cared about was as touched by the reason behind this opportunity as I was!

Here is our evening in photos:

Getting his baseball autographed by a player. Mason got 3 autographs and was shaking with fear when I asked him to take a picture with the player...hence, just this one picture of a player by himself (someone tell us who this is - we need to become more knowledgable fans!):

Next Mason got a balloon animal. He chose a Lion at the last minute and didn't smile the entire time his animal was being made, but he did watch the process very intently:

He LOVED the hitting center where air held a ball in place and he used his new Tigers bat - he hit every ball on the first swing most of the time (thus the natural athlete title?!):

We toured the dugout:

And the locker room:

Then we went out onto the field to hit some balls. I must have thrown the ball 50 times (I only hit him in the head twice - good thing it was a foam ball):

We had dessert and watched the fireworks:

At the end of the night when we were walking back to the car, I asked Mason if he had fun. He told me, "yes, this was better than a baseball game, Mom". I agree buddy!

Thank you to all of the Mott staff who helped plan this event. We didn't even get a chance to do everything - there was a lot of fun stuff. Next year we hope that Bill, Maddi and Ava can enjoy this opportunity as well. There are more pictures in our slideshow to the right!

Monday, August 15, 2011

New Beginnings

August will officially be considered a month of new beginnings!

For us it started with the wedding of our good friends, Mark and Jayme. It was a beautiful outdoor wedding and a wonderful reception filled with dancing and laughter. My legs hurt for 4 days after the reception!

Mason, Maddi, and Ava stayed home with Grandma and Aunt Lee while we spent the night in a hotel room. We enjoyed every minute of sleeping later than 7am in a bed by ourselves and didn't leave until 12:01pm (checkout was at 12pm). We missed our little bears.

Mason started doing chores and earning an allowance. Each day/night Mason does these chores:
- Pick up toys before bed
- Clear the dinner table
- Feed Waylon dinner
- Help Daddy with the trash (on Wed and Sun)

He marks his jobs off on his whiteboard. On Friday's he gets paid $3. He puts $2 in his jar to spend; $0.50 in his jar to save for charity/donation or for kids who don't have toys of their own; and $0.50 in his piggy bank to save forever (or for college!).

Mason has been saving for a plane from the Cars2 movie. He chose to save for 2 weeks and then we told him he had enough money (we pitched in some money so that he could see the fruit of his labor sooner rather than later). He was really excited to pick out his toy and pay for it. We were really proud of him for choosing to save his money so well.

Here he is waiting to pay for his toy:

Here he is handing over his hard-earned cash:

Maddi doesn't really have a new beginnings story. She's just been really cute and very grown up lately. She tells me "just a minute" if she is busy doing something and I ask her to come over to me. Here she is in all of her cuteness - she put the glasses on top of her head by herself:

Ava has lots of new beginnings!! She started daycare today with Mason and Maddi and I have to say that she was in a great mood and seemed happy to be with all of the kids. Mason and Maddi were very excited that Ava was staying at school with them and Mason helped carry Ava's seat and bag into school with a very proud look on his face. Maddi held Ava's hand all the way to school. I cannot even express in words what our daycare and all of the teachers have meant to our family. We are truly blessed that we can send Mason, Maddi, and now Ava, there every day without a worry and especially that they have taken on Ava's more complex care without skipping a beat. Thank you, Miss D, Mr. C, Miss M, and everyone else!

Ava has also been sitting and holding her head up a little better with some help. What a cutie!

On Friday, August 26 Ava will have surgery for her g-tube. This will allow her to have the NG tube out of her nose and she will get her formula through the g-tube (a tube surgically placed through her belly into her stomach). We have a world-class surgeon performing the surgery (he is well-known for his fetal surgeries!), so we feel that Ava is in the best hands possible. The decision to get a g-tube did not come lightly. We had been hoping that Ava would begin to swallow properly and could be rid of all tubes. However, she continues to aspirate even the thickest liquid (which she had previously swallowed properly). Therefore, feeding Ava orally may take longer than we anticipated and having a tube in her nose isn't the most comfortable. Though the g-tube requires surgery - she should be more comfortable in the long run.

This also means that Ava will begin seeing an OT for swallowing/feeding exercises. We love her OT and welcome her to Ava's growing medical team.

Bill's first day at his new job is today (but, no first day of work photo!). He did look very handsome in his shirt and tie when he woke me up before he left!

This was a lengthy update and it didn't even cover everything!! We will be sure to update about our upcoming family reunion and Ava's surgery in a couple weeks.

Please forgive the grainy iphone pics!!

Tuesday, July 26, 2011


Has it really been two years since we last updated our blog? Wow, time has flown by and so much has changed. In two years there have been many adventures, but by far the biggest adventure and joyful change in our lives has been the addition of Ava Lee Jones on February, 24, 2011. She arrived at 9:25am weighing 6 lb, 10 oz, and 21 inches long.

Mason and Maddi adore their little sister and love to say good morning to her and kiss her hello when they come home from school.

Some updates about each kiddo:

Mason - is enjoying preschool, loves the Cars movie and all characters from the movie. His collection of vehicles has grown, and he has officially reached the age where he wants every toy that every other kid owns. We are now having the "be grateful for what you have" discussions and "maybe you can do some chores to earn that toy" talks.

Maddi - is busy, busy, busy. We have never seen a child who can tear through a room in seconds, literally seconds. She is hilarious and loves to dance and sing. I see a cheerleader in our future. She loves to hold Ava, is a fantastic big sister, and sometimes is caught with Ava's "plug" (pacifier) in her mouth.

Ava - has a longer story. To make a long story shorter, Ava was born with a rare chromosome disorder. We did not discover this until she was hospitalized at 10 weeks old for bronchiolitis/aspiration pneumonia. Ava has many symptoms that you may read about as time goes on, but for the most part she is doing very well.

For those interested in genetics - Ava has a partial trisomy of the 1 chromosome (specifically a triple copy of 1q42.11-q44). This extra material is located on the top tip of her 7 chromosome - none of her 7 chromosome material is missing. Neither Bill nor I are carriers of this changed chromosome, so Ava's condition is considered "de novo" meaning that it is new to her. This also means that Mason and Maddi are unlikely carriers.

Ava was on oxygen for a couple months and has been successfuly weaned off. At this time she has an NG tube (a tube that goes up through her nose right into her stomach) because she aspirates liquids into her lungs. This has helped her gain some much needed weight. However, Ava continues to aspirate during all of her swallow studies, so we will be meeting with a pediatric surgeon (August 5) to discuss getting a g-tube (a tube surgically placed into Ava's stomach). Ava also has hypotonia (low muscle tone) so that means that she is a little behind in the gross motor skill category. She is not quite lifting her head when lying on her chest nor holding it upright for very long. She has started to push up with her arms when she is on our chest or shoulders, bearing weight on her legs, reaching for toys, and holding them if we put them in her hand. She is definitely cooing, smiling, laughing, very aware of her environment, and basically a very content and happy baby. Ava attends Physical Therapy a few times a month and in the fall will have a dedicated teacher and therapist work with her at home or daycare. She will continue her PT at Mott Children's Hospital as well.

Many people ask us what this all means for Ava's future. It is very hard to predict what Ava's prognosis is - we do know that her condition is not life threatening and that she can expect to live as long as the rest of us. As far as what her limitations will be - we aren't placing any on her and neither are her doctors - the sky is the limit for Ava - just like Mason and Maddi. Bill and I are both committed to creating a normal life for all of our children and providing each of them with the best healthcare and education available.

Clearly, Ava has lengthier updates and many doctor appointments. We hope that this blog will be a fair update on all of the kiddos, but we will also use this as a way to share and document our journey with Ava's more complex health needs. We hope that you will check back in with us to see how Mason, Maddi, and Ava are growing and thriving.

Thank you to all of our family and friends for your continued support in all aspects of our lives.
(And thank you to Uncle Chad for taking all of these beach pictures.)