MTM Family. The William Whiston Family Journey

Photos 2

2016-01-25T19:24:00.001-08:00

Photos

2016-01-25T19:14:00.001-08:00

Halloween Begins

2015-10-18T15:15:00.001-07:00

The Race Against Time

2015-10-10T08:18:00.003-07:00

Lately I have been thinking a lot about what it means to have mental strength. The mental toughness to keep going.

I recently ran my first half marathon. I had fully intended to spend my summer and fall training, but life got in the way. Our wonderful night nurse who had been with us since William came home with his trach and ventilator moved to be closer to family. I assumed the role of night nurse 7 nights a week. So my training ended except for my long runs on Saturdays (thanks to my awesome husband).

On race day I found myself standing in the corral waiting to start and fighting back tears. I hadn't slept in my bed in 45 days. I was mentally and physically tired and about to run 13.1 miles. I snapped myself out of my pity party and decided I started this goal and I was going to finish it (even if I had to walk a little).

The weekend after my half marathon, I had the amazing privilege to attend the Global Genes Summit in Huntington Beach, CA. I found my self surrounded by the most inspiring people imaginable. At the presentations of Champions of Hope Awards I was in awe of the mental toughness, kindness, humanity and overall perseverance in the room. The awards stage was full of legends in the world of rare disease. I found myself thinking about the mental strength I see in all of our MTM children and families. The strength to keep going despite the pain, the suffering and the hardships.

Below is a video clip of Alison Frase receiving the Global Genes Champion of Hope Award for Patient Advocacy. I love the term Champion of Hope. A champion is a victor in a challenge and there is amazing power in hope in the world of rare diseases.

I have often thought about our journey as a long distance race. A race that we didn't train for, doesn't have a course map, has an unknown distance and too many hills to count. Despite our difficult course our community/ Our Team is awesome! Our only opponent is MTM. We race against time that we fear our children do not have. Throughout our race we have learned a valuable strategy from our pace leaders. Perseverance. Perseverance is our strategy in our race against MTM and we are going to crush it.

Tomorrow is the Chicago Marathon and five amazing individuals are running to raise awareness and funds for medical research for Myotubular Myopathy. Collectively they have raised over $10,000 dollars and the donations continue to come in.
https://www.crowdrise.com/2015Will-CureTeam

A special Thank You to all of the runners in the Fox Valley Marathon and Brooklyn Half Marathon. You are an inspiration.

* Chicago Marathon Pictures coming soon!

Trampoline and Planes

2015-02-16T09:56:00.001-08:00

The kids have the day off of school today for President's Day. Juliet headed out to an open gym at gymnastics, so I asked William what he would like to do. He used his talker to communicate that he wanted to watch Planes on the trampoline. It took some interesting navigating on his talker to put those two together.

Happy Valentines Day!

2015-02-14T07:13:00.001-08:00

We may have spoiled the kids with a trampoline and new books!

Snow Fun

2015-01-14T20:21:00.000-08:00

Over the weekend the weather was warmer so we got out of the house! We went to lunch at Potbelly's and came home and played outside. William had a blast! He was all smiles as he drove his power chair around the driveway.

Physical Therapy Fun

2014-12-07T09:39:00.003-08:00

Below is a video of William working on some little sit-ups. I love watching the small smile on his face in this video! I can't help but smile too.

Cosmic Bowling. Whistons and McNamaras 11-22-2014

2014-11-22T20:48:00.003-08:00

Sunday Funday

2014-11-09T16:55:00.001-08:00

November 9, 2014. Sunday Funday brings us to Ju Rin for some scallops.

We also worked on some school art projects.

School Pictures 2014

2014-11-08T11:21:00.001-08:00

This week I received William's and Juliet's school pictures. School pictures are always a fun surprise. You get your child all ready for picture day and wait for the results...

When I opened William's school picture packet I was overwhelmed with happy tears and a memory of a conversation that we had one of William's NICU doctors came rushing back to me.

As any parent would be, we were full of questions in the beginning and were terrified for what the future may hold for our son. We expressed that we were worried that our son would not be in "the class" - I think were the words we used. We were trying to discuss Williams's short life expectancy. The doctor began to assure us that what we were looking at does not affect his mental capacity and did not engage in the life expectancy discussion. We did not have a diagnosis, so life expectancy was something that was unknown and extremely frightening,

I recently had dinner with some MTM mothers and the same topic came up during our conversations. Most had similar stories of doctors telling them the best we could do was to "enjoy your baby". As I sat and listened, I thanked God for our NICU/PICU doctors and nurses and our amazing pediatrician who never gave up on William or our family. One day shortly after we received William's diagnosis I was in his pediatrician's office and again brought up the topic of life expectancy. She stopped me mid-sentence and said that we were going to be proactive and aggressively attack even the slightest cold. She gave me her cell phone and told me I could call her anytime.

Thanks to all of these wonderful, caring physicians, I have school pictures of William. They collectively saved his life and gave him and us a chance. I will forever be grateful.

William's 3 year preschool picture 2014-2015

William's Preschool Class 2014-2015

Juliet's Kindergarten Picture 2014-2015

Halloween 2014

2014-11-07T11:23:00.002-08:00

Halloween 2014!

This year our kids started discussing Halloween costumes in September. Juliet wanted to be Elsa from Frozen and William picked out Buzz Lightyear with RC!

For those of you not familiar with Toy Story. RC is the Race Car, probably most know from the scene in the first movie when Buzz and Woody are chasing the moving truck. (see pictures below.)

On one of William's sick days in September, William and his nurse sat down and did a internet search for a cool wheelchair Halloween costume. And they found it! They found a little boy whose parents made him a RC. http://ideas.coolest-homemade-costumes.com/2012/11/04/coolest-homemade-buzz-lightyear-rc-wheelchair-costume/

William was so excited when he showed me the costume he picked out. I on the other hand was a little intimidated, but how could I say no an excited little boy. So I said why not! I can make RC for William!!

Included are some pictures of my progress. I used foam board to make RC; it comes in huge sheets in the insulation section of Home Depot, a hot glue gun with foam glue, my carving tool of choice was an electric knife (for family reading this blog...I could use a new electric knife for Christmas) and pool noodles for the grill!

Here are some picture of William in his Halloween costume at his preschool! They had a parade outside and William was the line leader! I think he was excited and proud of his cool costume, which makes all the hard work worth it! (Who am I kidding, I loved making RC for him!)

CMD-TR

2014-10-29T11:48:00.000-07:00

Last Friday I attended an event hosted by Dr. Mike Lawlor, Ph.D. and Stacy Cossette of the Congenital Muscle Disease - Tissue Repository (CMD-TR) located at the Medical College of Wisconsin in Milwaukee. The Congenital Muscle Disease - Tissue Repository is a project that Where There's A Will There's A Cure has helped to fund.

They invited local CMD (Congenital Muscle Disease) families for an afternoon at their lab. The event included information about tissue donation and subsequent research use, a tour of the facility, a presentation on animal model treatment trials, microscopic specimen viewing and the opportunity to meet the people who continue to support treatment discovery.

Dr. Meng, Jenny Tinklenberg, Dr. Lawlor, Wayne Cossette, Sharon Brunette, Melanie Whiston,

Stacy Cossette, M Lucinda Ladwig, Katie Mitchell and Patty Mitchell

What is the Congenital Muscle Disease Tissue Repository?

Basically, it is a place to safely store muscle or body tissues that is run by one of the leading muscle disease researchers and his highly skilled and committed staff. The CMD-TR stores left over tissue from a muscle biopsy, routine surgery or autopsy.

The slides of the tissues can then by accessed by the leading researchers from around the world as they work towards viable treatments for people affected by muscle disease.

Last summer, I consented to have whatever was left over from William's muscle biopsy sent to the CMD-TR for safe keeping. It was an easy process on my end. I simply contacted Stacy and signed the consent. The CMD-TR now has a block of tissue from William's muscle biopsy which was done back in November of 2011 safely stored in a freezer set at -80 degrees Celsius. (Included is a picture of the freezer.)

During Dr. Lawlor's presentation an interesting conversation emerged about who's tissue may be of scientific interest. The families that joined me at the event are affected by another congenital myopathy called Nemaline Myopathy. Their community is encouraging parents and even grandparents of affected individuals to donate any left over muscle tissue if for some reason they undergo a surgery. I then became curious and asked the question if there is an interest to collect samples from MTM carriers. The answer was yes, they are interested in tissue samples of both parents of individuals affected by MTM. The explanation was that is it of scientific interest to collect samples of the parents because as research progresses and more questions and answers emerge, it is easier to access data previously collected then to find out that that data is needed and then try to collect it. I found this information interesting and wanted to share in case anyone in our MTM community may have a surgery planed where leftover tissue may be able to be collected.

To learn how you can donate tissue to the CMD-TR, contact Stacy Cossette.

Thank you to Dr. Mike Lawlor and Stacy Cossette for hosting such an amazing event for local CMD families. I had a wonderful time learning about the CMD-TR and the exciting medical research for both Myotubular Myopathy and Nemaline Myopathy.

Preschool Update

2014-10-11T16:58:00.001-07:00

William has been in Preschool for a little over a month now. He attends school four days a week from 9:00 AM to 11:30 AM. School has been a bit of an adjustment for us all. In order to get William to school by 9:00 AM we start his breathing treatment at approximately 6:00 AM. Those of you that know William best, know that William is NOT a morning person.

On top of the schedule change, William caught a miserable cold at the beginning of September. He missed several days of school. We were doing breathing treatments (Nebs, Vest and Cough Assist) every four hours and had multiple trips to see the doctor. This went on for the majority of September. On the days he was doing well we sent him to school and on the not so good days he stayed home. (After such a long time not feeling well, we practically had to wean him off of his ipad.)

In spite of having a sick start, William is doing well in school. He often comes home smiling and has been vocalizing more than ever. I have received reports that he enjoys the circle time where they talk about the day, month and the weather. He joins his class at snack time, where he licks a sucker. I got a report from one of his nurses that he had a conversation about Batman with another little boy using a Batman page I had programmed in his talker (communication device). The class has had the sharing bag that allows one student per week to bring in a toy. He brought in Buzz Lightyear to share with his class. (See picture below.) The socializing he is getting in these situations is huge for his social development.

I also included a picture of William in PT/OT. The picture below shows him swinging while kicking a ball.

If I were to guess what William's favorite part of school so far I would have to say riding the school bus. We have programmed a page on his talker about the school bus. Complete with "Let's go Fred". Fred drives William's school bus and the other kids all say "Let's go Fred" before he starts driving. The school bus is a fun part of William's day. They play music, which William loves. The bus even has the window's decorated for Halloween!

Below are some pictures that Dan took of William waiting for the school bus and getting on the bus, along with one of myself and Buzz. Buzz loves helping me take Juliet to school and waiting for William's bus. He is often too excited and needs more training.

Here are a couple of fun pictures I took of William and Juliet playing on a Saturday afternoon.

The Unimaginable

2014-08-15T06:00:00.000-07:00

I have been trying to organize my thoughts for almost a week now. I am not sure how to communicate everything, but here is my attempt.

Last week began somewhat normally, we were busy preparing to send both kids to school (Kindergarten for Juliet and Preschool for Will) and busy preparing for two golf/dinner fundraisers for Will-Cure. Wednesday morning I was working on some emails to potential sponsors for one of the events. I had some general language describing MTM as a debilitating, life threatening disease. I asked Dan to review the email and we began a discussion that it is more than just "life threatening" it is "life ending" and how to best communicate the seriousness of MTM. We revised my emails to include the statistics: Only 2 out of 10 live past the first year of life and only 1% survive beyond the age of ten. Later that afternoon I received a call from Dan. He quickly asked me to step away from the kids and then told me he just found out that Louie Wilhelm had passed away. Louie, like William had MTM. He was 3 years old. I was heartbroken to hear such devastating news. The MTM community loses too many children and every time it is crushing.

We had gotten to know Louie and his family last year at the MTM-CNM family conference in Minneapolis. The Wilhelm family is from central Illinois. They also have a daughter, Emily, who is the same age as Juliet. The girls were instant friends. I remember thinking how glad I was that Juliet will grow up knowing another big sister of an MTM brother and William will grow up knowing Louie. The Wilhelms then attended the Will-Cure golf outing last fall. I was so excited to have another child affect by MTM at the event. I thought it would be good for our supporters to meet another child and family affected by this disease. Over the course of the year, Louie's mother, Lindsey, shared photos of the kids on facebook. I remember thinking that Louie looked great in all the pictures and videos. I could really see some gain in strength. I especially thought he looked handsome in the photos showing off his new glasses. He was doing good.

Last Saturday, I drove to Dallas City, IL to attend Louie's funeral. I walked in to see a small light blue casket and his mother, my friend, hugging friends and relatives. I completely lost all composure. I walked up to her, hugged her and started crying uncontrollably. I had no words, only tears.

In July of 2012 we almost lost William. He coded, stopped breathing and his heart stopped, shortly after being extubated after a surgery. It is a day that I have not been able to erase from my memory. It was terrifying to watch the PICU staff of doctors and nurses bagging him and performing chest compressions, to see the doctor that I remembered from an ER visit and the chaplain that I had met when William was in the NICU running down the hallway to William's room. I remember saying a small prayer asking God to please not to take him yet, that I was not ready even though I knew I would never be ready. At that moment a nurse grabbed my hand and walked me into the hall and asked if she could help me make some phone calls. Luckily they were able to save William that day. William had just turned one.

I tell this story because I think every MTM family has a story of a terrifying serious medical event. Some families have several. And too many that end more terrifying, devastating and crushing than mine.

Louie's family will forever be in my thoughts and prayers. The loss of a child is unimaginable. Even though MTM families to some degree can imagine the depth of the pain, it is still unimaginable. I only know how to pray for comfort, strength and peace for the families, my friends, that need it most.

Busy Summer

2014-07-14T16:34:00.000-07:00

It has been a busy summer. William has gone on many adventures.

He discovered the DuPage Airport! He loves airplanes and was thrilled to watch planes and drive his power chair on the tarmac.

We went to our favorite summertime BBQ at Uncle Den's house. Everyone had a great time. Juliet got to swim with her cousins while Will read books. Following the BBQ we went and watched fireworks in Batavia.

The whole family went to the movies and saw Maleficent. Dad had promised Juliet that he would take her. All four of us had a great time.

Juliet has been taking swimming lessons and goes swimming every morning. Juliet also spent a week at "princess camp". Juliet took part in princess themed arts and crafts. She had a great time.

We are starting the process of getting both kids ready for school. Juliet enters kindergarten and William will attend preschool. Juliet's school is only two blocks away. Mom will have the pleasure of walking her to school. William will ride the bus to his school. Our wonderful nurses, Erin and Sherry, will accompany Will. We are hopeful that he will love school as much as he loves learning on his iPad.

William's birthday is coming up, along with another outpatient surgery. Juliet is super excited for Will's birthday. She has been picking out presents and decorations. Due to the surgery, we are keeping the party small, but we have a special surprise for William!!!

We are also blessed as Nema and Papa are moving to Geneva. We are so excited to have them in the area. William is excited to have more people he can read with!

Things have been busy with Will-Cure. Two big fundraisers, the 2nd Annual Drive for the Cure in Springfield, IL and our Inaugural Will-Cure Open in Geneva, IL, are quickly approaching. We hope to have a good turnout and raise money to help cure this awful disease. There are so many people that have helped make Will-Cure a success. We are blessed to have such an amazing group of people around us. We also have the Bank of America Chicago Marathon fundraiser approaching as well as Sheri's Fox Valley Marathon.

The family recently ventured to downtown Chicago to meet with researchers and corporations that were attending the New Directions in Biology and Disease of Skeletal Muscle Conference. We were also able to meet with our other MTM / CNM families. We had a great time seeing everyone in person. It was great making new friends too!

Hopefully everyone who reads this is doing well. As you know, we are always happy to have visitors.

The Whiston Family

The Jumper

2014-06-24T15:09:00.000-07:00

In March of this year, we received the most amazing piece of equipment for William, a "jumper". The jumper allows William to stand, jump and dance!! Check out the video below:

DANCE PARTY!

As usual the kids are similar in height, although Juliet is convinced that she is still taller than William. Thank you Fontana Family for loaning us this extraordinary piece of equipment. It is heart warming to see William "stand" along with his sister.

Learning Fun

2014-03-07T21:10:00.000-08:00

I want to share with you some of William's new favorite learning games! William has the most amazing developmental therapist!! She never fails to come up with fun learning activities for William that he absolutely loves!

A little background story - When she first started with us about a year and half ago, William did not know what to think of her. For about two months he just stared at her with his little finger by his eye - assessing. We even noticed that his heart rate would go up when she would go to get a new toy out of her bag. Now she is by far one of his favorites. They are buddies.

Bath Letter - ABC Puzzle: One of William's favorite learning game that she introduced to him is an ABC puzzle made out of bath letters. She simply traced all the letters onto paper to create a puzzle. (the picture shows foam paper). William enjoys using the lightweight foam letters and quickly learned to match all his letters!

Shape Game: To make learning shapes and colors super fun she colored shapes on a foam cube from packing materials and made large matching shapes out of construction paper. She holds up a shape and William finds the matching shape on the cube. William loves this game!! (She will also hold up the large shapes and will have him tell her the shape using his talker.)

Spelling His Name: New this week - she wrote the letters in his name on pieces of paper had him match the letters on his talker to spell his name!

William and his Talker

2014-01-20T19:31:00.000-08:00

About this time last year we started teaching William to use a technology device for communication or as we call it, a talker. We started with one we had on loan through our Speech Therapist. William, being a little techie, took to it fairly quickly.

For awhile, he just explored. Pressing every button and memorizing. He quickly figured out ways to say things that were never modeled in a therapy session. William began saying "Mr. Potato Head" "Stuffed Toy" neither of which are his favorite toys. We thought he was just exploring the buttons and sounds until one day his nurse figured it out, William wanted to watch Toy Story! (Mr. Potato Head is a Toy Story character) William's face lit up when our nurse figured it out. We then told him he had to finish therapy first. Frustrated with all of us he put his head down on his tray. On a different day we hired William's nurse's daughter to babysit Juliet so we could go out. The kids loved having a teenager in the house. William used his talker to say "Check Her Out". This was amazing because the "Check Her Out" button is very hard to find and we had never heard him use that button before.

William was evaluated last spring on his abilities and by the end of the summer we secured a new talker. We ordered the NovaChat7. When the device arrived, it was way over my head and frustrating for William. I ended up scheduling a couple of training sessions for myself to learn how to program it. One of the first things I did to get William interested in using his new device is create a Toy Story page. William could now say "I Want" + "To Play" + "Toy Story" It worked and William was again engaged with learning his talker. I added a page with all his favorite books and even a sports page. (See video below of William leading an I-L-L....I-N-I chant.)

One week before Christmas, in full two year old behavior, he pushed the talker off his tray. William said "All Done" "I Want" "To Watch" "Toy Story". He said this phrase twice and became frustrated when I did not respond so he pushed it off onto the floor. Thankfully it was fixable and covered under warranty. So a week before Christmas we put the talker in the mail for repair.

Dan and I discussed what to do and decided that we needed to punish William because we could not have William throwing the talker and ipad on the floor when he does not get his way. We decided that a fitting punishment was to not allow him to watch Toy Story for one week. We had to explain to all of his therapists and nurses where the talker was and make sure the nurses knew that he was not allowed to watch Toy Story. Each time we told the story William would put his head down or shake his head no, as to not to talk about it. Poor Kid.

I wish we could say we got the talker back and everything is working great. But unfortunately when we got it back it was still having problems. So it has been sent back for more repairs. :-(

(Dan built a stand to free up space on William's wheelchair tray and to force the nurses to keep the talker near William at all times. We were going to purchase a stand, but the company was charging $500. This angered Dan so he went to the hardware store and made one for $20. He is currently making another one for Will's other tray.)

Our 2013 year in pictures

2014-01-15T10:13:00.002-08:00

Check out Our 2013 Year in Pictures

http://www.youtube.com/watch?v=0ldtduNWmp4

Christmas Eve

2013-12-24T21:15:00.001-08:00

We had a very special day! It was William's first Christmas Eve at Aunt Nonie and Uncle Jim's!! In years past we kept him home due to health concerns. We are excited that this year we got to spend Christmas Eve together with family! Joyous blessings.

Holiday Cheer

2013-12-14T15:15:00.000-08:00

Today we attended Juliet's preschool recital. Juliet was a superstar. The kids had a great time singing and dancing. William played the piano after the recital. The piano lessons have helped.

Our next stop was a visit to the Kane County Cougars. Santa made a special appearance at the ballpark. Juliet was really excited.

Winter is coming. Holiday Season Updates

2013-12-14T14:26:00.002-08:00

PRESCHOOL NEWS:

Lots of things going on with the family. We recently went to the preschool that William will be attending in July. Friendship Station is the school districts preschool.

The facility is very nice and we are confident that William will be excited to meet children and get out of the house more often.

POWER CHAIR:

We recently ordered William his very own power wheel chair!

After several appointments, William proved that he is capable of driving a power chair...although the walls in our house tell a different story! Shriners was kind and provided a "loaner" chair to allow William to master the skill. Now we will begin the process of getting the chair approved by insurance. Big ticket items such as this are usually rejected. We are ready to do battle in order to make sure William has a power chair for his first day of preschool in July. The process to get his stroller chair took nearly 10 months. We are hopeful that we have started this process early enough to allow William to get comfortable with his chair prior to school.

BAD NEWS:

William has had ear infections for the past three months. We learned that sometime last week one of his ear tubes has fallen out. Unfortunately another surgery will be necessary. We are working with the doctors and hospitals in an effort top try and complete all of the yearly tests at the time as the surgery. William needs yearly liver panels, liver ultrasound, kidney ultrasound, blood gas studies, CO2 monitoring and EKG.

Tribute to Matteo and his Amazing Parents

2013-12-14T14:00:00.000-08:00

Intro:

One of the goals of the blog is to inform those around us of what our lives are really like. Another goal is to achieve some sort of therapeutic relief from writing.

This is the hardest and most difficult piece to post for many reasons. We met the Serafano Family at the 2013 MTM Conference. At the conference we had 6 people in our party and therefore we often had our own table for meals as the tables only had room for eight. At one special dinner the Serafano family joined our table. William had the wonderful opportunity to meet and hangout with his MTM brother Matteo. Matteo's parents, Don and Nancy, are the kindest and warmest people we have met. They were quick to talk about their journey and their wonderful son.

MTM families from around the world are connected through a closed Facebook group. Don and Nancy are always willing to respond to questions posed by other families. On September 27, 2013 a post from Don caught us off guard. After reading that first post we kept checking Facebook as often as we could to learn of updates. What you are about to read is some of the most touching and moving writing we have ever read.

The following are Don Serafano's updates:

September 27, 2013
"Cardiac Arrest likely caused by a seizure. Paramedics got a pulse after 15 min . We think they stopped the seizure at Huntington Beach ER & it resumed after we airlifted to Kaiser LA. He has been seizing since we got here (8pm fri ) they have tried like 8 different meds- Kepra, Ativan, Dilantin, Versed, blood pressure dropped @ 1 point, phenobarbital, central line, pinofal, EEG, EKG, chest X-ray, labs, CT, blood gas all done stat he is sedated. They will keep him comatose 4 the next 24 hrs. Seizure continues"

September 28, 2013
"Matteo's brain is quiet. He looks like he is sleeping. I cleaned his neck and changed his trach ties. Now is the time to wait and listen to him breathe."

September 29, 2013
"Some of the staff refer to Dr Johnson as Dr J. He has been caring for Matteo since our first trip 5 1/2 years ago to the LA PICU. I was happy that he personally put in Matteo's central line yesterday.

Matteo has had a quiet, stable restful night."

October 1, 2013
"We bathed Matteo slowly and carefully while playing some of his favorite bath time music. As we washed his hair, we were able to wash out some of the residue from the EEG leads.

Seeing his hair reminded me that I had used the Flowbee to cut his hair two weeks ago. He never enjoyed getting his hair cut but he tolerated it better when he knew that some bath play time followed.

The bathing ritual was very cathartic for us. We cried as we washed each finger and toe. We washed away the glue from medical tape. Nancy removed the bandaid from the lumbar puncture. We massaged lotion into his skin. I applied lip balm.

As if choreographed, Pandora played a song from Matteo's favorite movie, Mary Poppins. Nancy and I softly sang in unison as we washed and cried.

Let's Go Fly a Kite

Oh, oh, oh
Let's go fly a kite
Up to the highest height
Let's go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let's go fly a kite

When you send it flying up there
All at once you're lighter than air
You can dance on the breeze over houses and trees
With your fist holding tight
To the string of your kite

O, oh, oh
Let's go fly a kite
Up to the highest height
Let's go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let's go fly a kite."

October 2, 2013
"The physical tests confirmed that Matteo left us on Friday and that only his body remains. He looks like he is in a deep peaceful sleep.

Neurology will repeat the brain death tests tomorrow morning.

The tests were supposed to be done once by Neurology and once by the PICU staff some hours apart to determine if the physicians agree pursuant to national pediatric standards.

Nancy and I wanted to witness the tests. We certainly weren't going to let the lack of a knee jerk reflex that Matteo never had be a determining factor.

We waited all day for Neurology only to eventually learn that Neurology finally figured out that they couldn't complete the tests so the PICU staff should perform the first set at 6pm.

After one shift change, two PICU admissions, the doctor's meal break, we were getting sick with exhaustion. I decided that a peaceful protest was my best course of action. I went into the hallway and laid down on the floor. One of the nurses we know walked over to ask if he could get me anything. I told him that he should think of this as a sit in. He said that he would get the charge nurse for me.

I was able to explain to the charge nurse the difference between what we had been told during the day and what had actually happened. I was successful and we were moved up the priority list.

I can only imagine the look on my face as I swiveled my head to look from Matteo to the doctor as he entered Matto's room. He stuttered and took a 1/2 step back. Remembering that I wanted his cooperation, I explained the problem. He explained the tests and what involuntary reactions each test was designed to provoke and we observed with the staff.

We are continuing to lovely care for Matteo's body by washing him, singing to him and holding him. So many people are praying for Matteo. If a miracle is supposed to happen, it will happen.

Friends and family have all been overwhelmingly kind, caring and supportive. We are surrounded by love. When Nancy and I cry, we are comforted. When we forget to eat, we are fed. When we are too exhausted to walk, we are supported. When we need to be alone with Matteo, our wishes are respected."

October 3, 2013
"We have been having a day of cuddling, music and singing to Matteo.

Today's tests and results were exactly the same as yesterday's.

Everything is delayed until approximately 10pm. That time is always subject to change. It takes a great deal of coordination with the surgical teams. Now things are delayed until 1am.

It turns out that Matteo's organs can be donated in addition to what the MTM researchers need. Had we known, we would have requested that One Legacy begin the coordination yesterday. However, without our direct request, there are a lot of restrictions as to when they can talk to us."

October 4, 2013
"Our World Stopped"

"Nancy and I held Matteo until his heart stopped beating at 4:30am today."

October 5, 2013
"Matteo's Gifts"

"Nancy and I can't begin to express how much we miss Matteo and how thankful we are to be part of such a wonderful community.

Throughout this past week, Nancy and I have been able to and will continue to draw strength from each other, our family and friends. The love and support that surrounds us has helped us rise from our bed each day and make the most difficult decisions that a parent will every have to make.

Nancy and I witnessed Matteo's death twice. The first time was Friday September 27th at 4:30 pm at the end of therapy. The second was Friday October 4th at 4:30 am at the hospital. Matteo's first death extinguished the light behind his eyes leaving only his body behind. Matteo's second death freed his body from this world.

Even after his death, part of Matteo's body will live on in others. His kidneys and heart valves will help other children live longer and with less pain. His corneas will help other children see the faces of their loved ones and all of the beauty this world has to offer. Nancy and I were told that we would receive more details about the children that Matteo helped in about one year. Matteo also contributed tissue needed by the researchers to help continue the amazing progress that we witnessed at the 2013 MTM-CNM Family Medical Conference.

We had prepared as much as any parent could for October 3rd to be our last day to hold Matteo in our arms. We walked to the hospital from the Ronald McDonald House. Several people apologized for the miscommunications and delays during the prior day that culminated with my 'sit in'. Neurology examined Matteo in the morning and confirmed what we had known for several days.

We asked the staff to stop drawing blood gasses so that we could spend time alone with our little boy. We took turns cuddling Matteo, sobbing in uncontrollable fits and holding each other. We played lullabies and Matteo's favorite songs. We helped each other get into Matteo's bed by climbing through the ventilator tubing, medical lines and probes. Several times, all three of us managed to precariously balance in the hospital bed at the same time together.

Earlier during our hospital stay, someone had misinformed us that Matteo's organs were not suitable for donation due to MTM. Just about the time that we were ready to talk to the PICU staff about turning off the ventilator, One Legacy talked to us about organ donation. They were going to need many hours to get everything ready including a surgical suite and the surgery team. Had we known, we could have requested to speak with One Legacy two days before. The rules prohibited One Legacy from contacting us until after the second exam confirmed that Matteo no longer had any higher brain functions. One Legacy spent as much time with us as we needed answering our questions and explaining the details. We learned that Matteo's trusted Dr. J would be with the three of us every step of the way and that we would have only five minutes to hold Matteo after his heart stopped beating.

We knew that our 2012-2013 Anderson Elementary Student of the Year would want to help as many children as possible. Therefore, Nancy and I knew that we had to wait as long as needed even though we were days past emotional and physical exhaustion. The tentative time was set for 10 pm.

Matteo was exhausted as well. His heart rate slowed and his blood pressure dropped. If they fell below the minimum for too long, his organs would no longer be suitable to help others. We had given our permission to resume treatment. Dr. J and the PICU staff kept Matteo stable. We had time to thank some of great staff that had taken such good care of Matteo during our many PICU visits. They shared our grief.

Our surgery time changed several times. We gathered our personal items from Matteo's room. This was the first time that we were not packing all of the extra medical supplies for use at home. We selected and downloaded three of Matteo's favorite songs that we wanted to play during our final moments together.

At 4 am on October 4th, we walked down to surgery with Matteo. At the point where we would usually kiss Matteo goodbye, we changed into clean wear for the surgical suite. I gave the staff my phone so that they could play Matteo's music over the speaker system.

In the operating room, the lights had been dimmed, divider curtains were placed around us, our music was playing, kind supportive words were spoken, and Dr. J was close by.

I took off Matteo's g-tube extension. Even now, I did not want to take a chance of pulling out his g-tube during transfer. Nancy and I were seated together. I asked for and was given a pillow to put under Nancy's arm so that we could hold Matteo together just as we did at home.

The ventilator was turned off and Matteo was gently handed to us for the final time. Nancy and I cried and the staff cried with us. We sang You Are My Sunshine, Let's Fly a Kite and Somewhere Over the Rainbow to Matteo as we held him close to us in our arms and hearts.

Time passed and Dr. J confirmed that Matteo's heart had stopped beating. At the appointed time, we surrendered Matteo's body to the surgical team and Nancy and I were helped out of the operating room so that Matteo could give what he no longer needed to help others."

October 7, 2013
"Coming Home"

"Nancy and I worried about how we would feel about our house without Matteo. Would seeing all of his things be too much to bear?

As we slowly drove home, I remembered that Matteo's astronaut Halloween costume would be hanging on his door. How would we feel living in a quiet house without the sounds of Matteo, his nurses and his equipment?

When family offered to be at our house when we arrived, I wondered for a moment if they needed to grieve with us rather than alone. We accepted and they were waiting for us when we arrived. Matteo's little dog, Sunny, was thrilled that we were home.

Family brought food, helped unload the car and, most importantly, were there for us to help us grieve with them. They helped us make plans for Matteo's memory.

My only experience with funerals and memorials was attending a few. Like many things, I started on the internet. Nancy and I had talked generally about what we wanted for Matteo but now it was time for the details.

I forgot to ask the hospital how many days we had before Matteo's body must be picked up. I had signed some paperwork at the hospital. Based on past experience, there always seemed to be more paperwork but what was it and how did I find it?

We knew that we were functioning in a cloud of emotions. We wanted someone to review our choices and family was there with us.

After we chose a cremation service someone decided to look for reviews. The cremation service actually had good reviews on Yelp. I had no idea that those services were reviewed on social media.

We wanted to select a place for a memorial to celebrate Matteo's life with those who cared about Matteo and knew us. How many people? It was hard to think. Matteo has touched so many people in his too short life and we wanted to invite everyone that was important to him.

So many people have helped with things both big and small. The neighbor who refused to let us fix their car after Matteo drove his wheel chair too close. The school bus drivers who were always ready to help including driving Matteo and his nurse to Nancy's school to pick up a forgotten house key. The children that invited Matteo to their birthday parties.
Family helped pick the location, date and time. They went down that same day for the reservation deposit. We are so thankful for everyone's support and help.

Eventually, it was just the two of us at home. Nancy cried just looking into Matteo's room. Matteo loved his room. As much as he loved doing new things, Matteo was always happy to be home in his room. That first night, I turned on Matteo's favorite turtle night light. The machines were silent.

In our bedroom, I closed the door the same way I did every night that Matteo had a nurse. Nancy cried because there was no need to shut the door. Sunday morning, I laid in bed. I did not need to get up to take care of Matteo.

Apria called on Sunday about picking up their equipment. I told them that I would make arraignments and hung up. Had Apria ever called on a Sunday before? Had I ever been able to talk to anyone other than the answering service on a Sunday? Which company owned which piece of equipment? What equipment was still at school? What things did we own? I wondered when and how would we ever be able to sort it out.

I cried thinking about someone taking Matteo's bed and the empty place in his room and my heart.

Nancy and I went into Matteo's room together. After trying to take it all in, we started looking more specifically. I decided that I was not going to miss the ventilator, suction and Matteo's other equipment. Those were not Matteo's but merely tools that I used to take care of Matteo. While Matteo's equipment was expensive and complicated, I wondered if I needed it any more that I still needed a diaper pail.

I looked at the hospital pole for Matteo's feeding pump. We decorated and hung things on it so that the pole sort of looked like a mobile. The things that Matteo liked to grab, push or kick would stay after the pole was gone.

I saw a video sticking out of Matteo's VCR. Could it be? Yes, it was Matteo's favorite, Mary Poppins. The things that transformed Matteo's room from a hospital room to Matteo's home would stay as long as we wanted them. His pictures, toys and clothing would still be in his room after the equipment was gone.

As I drank my coffee, I looked out the window at Matteo's blue swing. I remember how much he loved to swing and how he would drive his power chair into the backyard to tell us that he wanted to swing.

I knew that after the tears dried, Nancy and I would be ok at home because home is where the good memories are."

October 17, 2013
"Matteo's Cremation"

"Nancy and I witnessed Matteo's cremation two days ago.

Nancy and I had agreed, some time ago, that we both wanted to have our remains cremated and our ashes scattered at sea. We chose the same for Matteo.

The water has always been an important part of our lives. Nancy and I were competitive swimmers from childhood through college. I don't even remember learning how to swim. Swimming was just something that I always enjoyed. One of Nancy's first jobs was as a lifeguard and swim instructor at a local pool.

Nancy and I grew up on swim teams. We spent summers participating in Junior Lifeguards and swimming in the ocean. I played water polo for more than ten years and scuba dived. I spent many Wednesdays sailing with my father. We never won a race but alway had fun together.

Matteo was excited when we decided to take him swimming. My Mother always encouraged us to bring Matteo to her home so that he could go in the pool. Matteo loved kicking his legs in the water, splashing with his hands and floating. Matteo would never signal that he was done swimming. If we had let him, Matteo would have played in the water until he fell asleep.

Nancy and I decided that we wanted to remember Matteo while watching a sunset from the beach. By placing his ashes in the ocean, Matteo would be with us no matter how far we traveled.

We had never made plans like this before. As with many things, we started our research on the internet.

There was a wide variation in pricing. We knew that we did not want to have any sort of open casket funeral home type of event, so that eliminated the highest prices. The cheapest option would have been to let the county handle the cremation. Using the county would not have allowed us any control over the process or timing. We knew that we wanted the cremation completed before Matteo's memorial.

We decided on something in the lower mid-range that had a couple of options and a more personal touch.

I read about places that would launch a portion of Matteo's ashes into space or turn a portion of his ashes into jewelry. I did like the idea of Matteo being in space free from gravity but I decided that the water was the next best option and I wanted to spend that money on Matteo's memorial.

Nancy and I decided to keep our original plans for a memorial celebrating Matteo's life and to place his ashes into the ocean.

Nicole made the arraignments to pick up Matteo from the hospital. She handled the paperwork including a permit to scatter Matteo's remains at sea.

One of the options that I wanted was to witness the cremation. I wanted to bear witness to Matteo's entire life from beginning to end.

I was not sure how I was going to feel witnessing the end. I did not want Nancy to feel that she had to attend just because I wanted to be there.

We selected a biodegradable 'pillow box' for Matteo's remains. It was engraved with 'Matteo Jackson Serafano' and 'Forever in Our Hearts'. I wanted the crematorium to put Matteo's ashes directly into our pillow box rather than transfer the ashes myself.

The pillow box would dissolve a few minutes after being placed into the water. It would also prevent us from being coated with Matteo's ashes should there be a sudden shift in the wind while on the boat. This problem occurs more often than you would imagine and Nancy had personally witnessed this problem.

Nancy decided that we should attend the cremation together. We drove to the appointed place at the appointed time. The place was necessarily in an industrial area.

Nicole greeted us at the door and made sure that we had everything that we needed in the waiting room. When they were ready for us, she told us what to expect.

I had chosen the option to see Matteo's body one last time before the cremation began. I was nervous about what I would see and feel.

Nicole assured us that Matteo was in good condition and that his eyes were closed. She warned us that his mouth was open. I replied that he lived with his mouth open.

We were escorted to the room with the cremation oven. The lid was pulled back to reveal Matteo's face. Thankfully, the rest of his body was covered with a sheet.

Matteo's face looked peaceful as if he was sleeping. However, our baby had left us and all that remained was his shell.

After a moment, we asked that the box be closed. We held each other and cried as Matteo's shell was rolled into the cremation chamber. Every aspect was handled with respect and sensitivity.

Some minutes had passed. It was going to take a couple of hours for Matteo's ashes to cool sufficiently so that they could be placed into his pillow box.

Nancy and I adjourned to a pub and waited for a phone call from the crematorium. We managed to eat something. Time passed slowly. Eventually the phone rang. We returned to the crematorium to retrieve Matteo's pillow box.

Matteo's remains are safely at home for a few days. We are going to rent a Duffy electric boat, play some music, scatter some flower petals and surrender his ashes to the sea."

October 21, 2013
"In Memory of Matteo"

I would like to thank everyone for coming to McKenna's on the Bay to remember - and celebrate Matteo's remarkable life.

No matter how long Matteo lived, we would have wanted more time with him. Celebrating his 5th birthday gave me hope for the next five. Nancy and I had saved him so many times that I began to think that we always would be able to so.

Matteo fought to live and breathe from the moment that he was born. His love of life was an inspiration and contagious. I like to think of him now - as being able to run - and breathe freely. One time, I had a dream that Matteo walked into our bedroom and asked us why - we were still in bed - because it was time to play. I hope that he dreamt of flying like we did Soaring over California.

We will be forever thankful that we had Matteo for 5 1/2 years. We will be thankful for all of the wonderful people who helped us care for him and showed us random acts of kindness. We are thankful that we were able to keep Matteo's world big.

Matteo had the ability to smile with his whole body and light up the room. He inspired people and brought out the best in people. His face was very expressive. He got very good answering yes and no questions and looking at or reaching for what he wanted.

One time, Matteo would look at the movie playing on TV with a cry face and then look at me. As soon as he saw me looking at his face, he would turn back to the movie with his cry face. I finally realized that he didn't want the movie that was playing - so I gave him a choice of some others.

When Nancy and I were feeling down, holding Matteo for a while would always make us feel better. We called that Our Matteo Time. When we held him, he would look into our faces as if we were his entire world. What a great feeling. Of course, Matteo's next move was to reach up to tangle Nancy's hair or try to stick his hand in my mouth.

Nancy and I talked about making good memories. We have so many vivid memories of our time with Matteo. When he was in bed and ready to sleep, he would roll onto his left side toward the wall to say "Stop Messing with Me". But then he would look over his shoulder to make sure that we were still standing next to him.

Matteo loved Disney Land and Mary Poppins. It was a treat for him to go anywhere there were people, lights and music. He loved car shows, the circus, swimming, his swing and going fast.

Matteo's favorite Disney ride was the Jungle Cruise. They had one boat that could accommodate his wheel chair. One day he was exhausted and I asked Matteo to show me if he wanted to be all done and go home or more and ride the Jungle Cruise. He was so tired that he could barely show me his answer. Sure enough, Matteo signed for more to ride the Jungle Cruise.

Cars Land opened up during the year that we had passes. My worst idea was the Matter Tractor ride. When it swung to the right, I could hold him close to me. But when it swung to the left, I had to try and hold him and his equipment close to me but not crush him against the side of the seat. We survived but Matteo looked stunned as if he had been mugged. I am sure that Matteo wondered what could I have been thinking.

Nancy and I liked to take Matteo on the car race coaster. With three seats across, we could hold him between us with his ventilator on the floor in front of us. I think that everybody has experienced batteries, such as in their cell phones, that stop holding a full charge. The same was true of the ventilator's internal battery. One time the battery ran out mid-way through the coaster. We just took the tubing off of his trach and he finished the ride like a champ breathing on his own.

Nancy, Matteo and I managed to drive 2,000 miles to Minneapolis and back in July for the Family Medical Conference. I felt like MacGyver working out solutions to all of the expected and unexpected problems. Like most kids, Matteo spent a lot of the time in the van playing with his iPad.

We fought for three years to get Matteo a power wheel chair and I will always be glad that we did. It was tough to teach a four year old how to drive a heavy vehicle but it was well worth the sore toes and holes in the dry wall. We loved that Matteo was finally able to explore his home and outside. It was great that Matteo could show us what he was interested in.

Matteo drove his power wheel chair at school for kindergarten. During recess, he wanted to be with the other children so he drove toward them on the playground until he got stuck in the wood chips. When he realized that he was stuck, Matteo put his head in his hand as if to say "You Guys Figure it Out". The janitor had to get some boards so that Matteo could get enough traction to drive out.

Matteo's mind was like a sponge. I remember watching him put the letters of the alphabet in order. He was always so proud of himself when he learned something new.

Matteo was the Anderson Elementary Student of the Year for the 2012-2013 school year. He was the big man on campus. He had friends and the girls always wanted to try and make him smile. I think that they found that singing and dancing worked best.

Nancy and I cry together because of how much we miss Matteo. But we feel privileged to have cared for Matteo, played with him, and learned from him. Matteo gave us the opportunity to share his extraordinary life. I am sure that Matteo would have said thank you to everyone for making his world so very big.

No matter how much Matteo time we had, we would have wanted more Matteo time.
Matteo will be - forever in our hearts."

Donald B Serafano

I wanted to post this because I have still not figured out what to say to Don and Nancy. As things were unfolding I could not find the words to match my emotions. Time has past and I still do not know what to say.

Another reason I want to post this is because his words match the awful thoughts that unfortunately are too frequent. For over a year I have been unable to shake the daily reminders that my family's journey with MTM will likely end in the same manner. Don's grace and strength has given me a measure of comfort in knowing that I too can be like Don and handle the worst situation imaginable. His words have encouraged people throughout the MTM community to hold their kids a little tighter and spend an extra 10 minutes reading books.

Fall Fun - Photo Catch-Up

2013-11-07T18:42:00.005-08:00

It has been awhile since I have updated our blog. So I have put together a "Fall Fun - Photo Catch-Up"!

September 26, 2013 - Norton's Farm in St. Charles

Thursday, September 26th was a beautiful fall day. William's speech therapist canceled due to a cold so we decided to head to Norton's Farm. The kids had a blast. First we grabbed one of their red rider wagons and took a lap through the barn to pick out pumpkins.
We even pick out a blue pumpkin!

Then we checked out the field, which was full of fall fun to explore. There was a corn maze, a tractor, turkeys and a tractor made out of hay bales and farm animals to feed.

It was a wonderful impromptu adventure!

September 27, 2013 - Puppy's Flight Arrival

On Friday September 27th Dan picked up our new puppy at O'Hare! After several e-mails with the University of Washington regarding our new puppy's proposed flight schedule from Seattle to Chicago and various other details, the day had finally arrived.

In anticipation for our new puppy, his name was thoroughly discussed by the entire family. Ultimately he was named Buzz after Buzz Lightyear from Toy Story!

Buzz spent his first week shy and timid. Now he is a very busy puppy running around the house with Juliet. One of his favorite activities is running around the house with any toy or shoe he can grab. In fact, we just bought William's physical therapists a new pair of shoes. If anyone knows how to break puppies of this habit I could use some advice.

Monday, October 28, 2013

I achieved a mommy milestone! I traveled with William by myself!! (I had not traveled with William without a nurse since he got his trach and vent summer of 2012 shortly after his first birthday.)

Currently William does not have a nurse on Mondays and Juliet has preschool. His night nurse agreed to stay late on Mondays to allow me to get Juliet to preschool, since William's mornings are busy with his breathing treatment (nebs, vest and cough assist). And William and I picked her up on our own! Juliet's preschool is awesome about bringing out kids to parents with babies and gladly agreed to bring Juliet to the van so I would not have to unload him at the school. It worked out perfectly, with no problems. It was fun to get out just me and my little man for a car ride to pick up his big sister!

At first I was nervous thinking about attempting this on my own. But after thinking about it for awhile, it occurred to me that of course I can do this. I took care of William on my own for an entire year. Driving Juliet to and from school two days a week and taking William to appointments as far as the University of Chicago. And yes, there were times I had to stop the car to suction him. So why not? I am far more equipped to handle an emergency now than I ever was that first year.

I am glad that I took this step. I think it will be good for Juliet, William and myself to feel this type of normalcy once a week. Last year when William came home with his trach and vent and we adjusted to living with nurses, one of the question Juliet would always ask me is why William does not come with us to go to her school anymore. The first time she asked me this question, I fought back tears remembering our first year all together. Their car seats were beside each other and Juliet always insisted that she hold his hand the entire trip to preschool or home.

Pumpkin Carving and Halloween 2013

The kids were excited about Halloween this year. We carved/decorated pumpkins. Juliet and Dan made a pumpkin with happy face while William and I turned ours into an Elmo vampire.

Dan and I took the kids to the Halloween Store and Target earlier in the month, where Juliet picked out Bat Girl costume, we all pick out a Buzz Lightyear costume for William and a Hot Dog costume for Buzz (the dog). It was really William's first time shopping with us. We had never taken William to run errands in order to try to protect him from colds. It sounds funny, but just going to the store turned out to be a fun little family outing

Unfortunately our first real cold of the season hit our entire house the
week of Halloween. William required extra breathing treatments every four hours and antibiotics and Juliet joined him with an ear infection.

Halloween turned out to be a yucky, raining day. Luckily there was a break in the rain and Juliet and Dan were able to go out with one her friends for a little bit. But William not feeling well stayed home with me.

Since Juliet is allergic to peanuts we are visited every year by the Switch Witch.

If you have not heard of the Switch Witch she is a very nice witch who loves peanut candy. Every year we leave all of our peanut candy out for her on our deck. And every year she takes the candy and leave a toy for the kids.

This year the Switch Witch left Juliet the Little Mermaid Movie along with a new Arial doll and William a Toy Story Computer.

William loves his Toy Story Computer!! And Juliet has been watching her new movie and playing with her new doll. (Although Buzz ate one of Arial's shoes.)