Tuesday, December 24, 2013

Christmas Eve

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.

Saturday, December 14, 2013

Holiday Cheer

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

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.
Friendship Station Preschool Logo
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


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. 

Thursday, November 7, 2013

Fall Fun - Photo Catch-Up

 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.)








Saturday, July 27, 2013

Live from the MTM Conference

Day 1
The meet and greet was fantastic. Families introduced themselves to each other and mingled with researchers and clinicians.

Day 2
The morning began with an introduction from Dr. Alan Beggs of Boston Children's Hospital.

Anna Buj Bello was next.  She is the head of a research team at Genethon in Paris, France.  She started with a brief overview of gene therapy.  

The production of vectors and studies concerning the safety of vectors was next.  A great amount of vector is required.  1000 billion for each patient is a lot of vector.

The results of the MTM mouse model with AAV showed a significant positive change when injected in a single mouse muscle.  The mouse would have died within weeks, but survived over a year following the administration of the therapy.

Dr. Martin Childers of the University of Washington expanded on the information presented by Anna Buj Bello.  Pilot studies in larger animals appear to have similar results to the mouse models.  This is exciting.  Improvements in muscle strength following an infusion injection are encouraging.  Ms. Goddard shared her work concerning pulmonary function.

Dr. Michael Lawlor presented information concerning enzyme therapy. He provided a brief overview of enzyme therapy and the mechanisms for delivery.  Positive results have been shown in early mouse models utilizing enzyme replacement therapy.

Deborah Ramsdell, CEO of Valerion Therapeutics, discussed the enzyme therapy drugs Valerion is working on.  She provided information concerning their current studies and their goals for advancing enzyme therapy through clinical trials.

Dr. Laurent Servais discussed his methods for developing tests to measure function and the importance of longitudinal study.


Sunday, July 14, 2013

Our Holiday Weekend


Our 4th of July Holiday Weekend was filled with fun adventures! Here are some fun pictures and stories from the weekend.

Thursday, July 4th 2013: 
We started our holiday weekend at a family 4th of July party at Uncle Den's and Aunt Gerry's House! It was wonderful to be able to take William to a family party!
Aunt Nonie and William with his new rain stick

Later that day Aunt Rachel, Uncle Josh and Brooklyn arrived in town from Kansas City!

All of us went to Batavia's firework spectacular. It was perfect. They had convenient handicap parking that allowed us to get a nice view. We were able to park our van in a church parking lot close to where everyone was set up with blankets. William sat in my lap during the fireworks and acted as if I was his human lounge chair leaning all the way back for optimum fireworks watching. He enjoyed the fireworks. He only covered his eyes a couple of times. He was not a fan of the ones that fizzle downward and the super bright ones.




Friday, July 5th 2013:
On Friday we took the kids to see Monsters University. William watched the movie for a few minutes and decided he did not like it and shook his head no, started crying then fell asleep.

Saturday, July 6th 2013:
Mr. Lightyear Balloon, William (Buzz), Juliet (Woody)
& Brooklyn (Jessie)
On Saturday we celebrated William's 2nd birthday! William's actual birthday is on the 18th, however since Rachel and her family were in town we decided to have an early birthday party!   The theme was Toy Story!

William and his Buzz Lightyear
William has been into Toy Story lately. In fact he has figured out how to ask for Toy Story with his talker. We have not spent time programming the one we are currently learning on since it is a loaner and we are getting a new one soon. So of course there is not a button for "Toy Story" but there is a "Mr. Potato Head" and "Stuffed Toy". He has taught himself to push these two buttons to ask for his movie.

William had a great time at his birthday party. I think William's favorite present was his very own Buzz Lightyear!

Ava, Mr. Lightyear and Apolo
Later that evening, we got a visit from the Cooke Family!! It was great to see Nick, Mavis and the kids!! We even got Ava and Apolo to pose with Mr. Lightyear.

To Infinity and Beyond!


Sunday July 7th 2013:
Sunday was the Where There's A Will There's A Cure's Bash at the Ballpark Event at the Kane County Cougars Minor League Stadium (a class A-Affiliate of the Chicago Cubs). We reserved the outfield party deck for our friends, family and supporters.  

The Cougars were awesome to work with. They really made sure William and our guests had a good time.

All the kids were supplied with kid zone passes. The kid zone was located directly behind the party deck and contained face painters and bounce houses! Below are pictures featuring Brooklyn and Juliet with their face painted like pirates. William got a small baseball temporary tattoo. As you can tell from the photo with Brooklyn he is not a fan of face painting. In fact we had him sitting near the face painter where he could watch Uncle PJ play basketball and he got upset. I think he thought he was in line for face painting.
William and Pirate Brooklyn
Pirate Juliet and William











Ozzie the Kane County Cougar's Mascot even stopped by to meet everyone!

Juliet and Ozzie
William and Ozzie


The Bash at the Ballpark turned out to be a great day with family and friends! Thank you to everyone who joined us at the game! (click here to see more from the day.)



At the end of our four days of fun pack adventures with the kids William began vocalizing! We brought him home from the game because he was getting hot and falling asleep in his chair. Once home he was wide awake and vocalized for 45 minutes (see video below)!! William hardly ever vocalizes or communicates with sounds so this moment was very exciting!

It is almost one year ago we came very close to losing our sweet boy and chose to have him trached and vented. Almost one year ago we stopped hearing that little voice babble and say mama. I have watched this video a countless number of times. I can not put into words how happy it makes me to hear his little voice again.

Monday, July 8, 2013

A day in the life..

People who have visited our home have told us that they did not have an understanding of William's daily medical treatments until they saw it first hand.  We are posting these videos to give a portrayal of Williams's daily care.  DISCLAIMER:  These are not medical videos or "how to" videos.

To start our morning, William gets a nebulizer treatment of multiple medications including albuterol and pulmocort.  These medications are administered through the ventilation tubing (circuit).  This is done every morning and evening.  In times of sickness the medications may be administered every four hours.  The purpose is to loosen secretions so they can be suctioned out with a suction catheter.




The next videos show the shake vest.  It is also called a smart vest or percussion vest.  This vest uses a vacuum to inflate and deflate a wrap that goes around William's chest.  The purpose of the vest is to shake out any mucus that might be stuck in the airways.  William has to endure this for 20 minutes in the morning and 20 minutes at night.  We might do this more often if William has a respiratory infection.  This is one of the machines that we believe had kept William out of the hospital.  Notice the suctioning in the first video.  Suctioning is done throughout the course of treatments to remove the secretions.  A suction catheter is attached to a suction machine.  The catheter is inserted directly into the trach.






After the breathing treatment and the shake vest we move to the cough assist machine.  This machine blows air into the lungs with force and then sucks it out with force, mimicking a cough.  The machine mimics five coughs and then the suction machine is used to pull out the loosened mucus. The process helps prevents mucus plugs.  This machine is used immediately after the nebulizer treatments and shake vest.  In tandem, these treatments remove the mucus that cause breathing difficulties.  Again this is done twice a day with additional treatments as needed.  The entire  process takes about 45 minutes.  So we spend at least 1.5 hours per day giving these treatments.





Food.  William cannot swallow without aspirating.  His food is pumped directly into his stomach though a G-Tube.  As you can see the food placed into a bag.  A pump moves the food through the G-Tube into his stomach thereby avoiding the airway.