Hand Surgery Update

Matthew's hand surgery was originally scheduled for January 6, and has been postponed 4 times since.  Two issues keep arising-- 1.  Matthew needs to be well for 2 weeks prior to surgery and 2. The anesthesia team at the hospital is leery about Matthew because of his subglottic stenosis (small throat opening).

Issue #1- Matthew just cannot seem to stay well. He was pretty much sick from the end of October through the end of December.  Our pediatrician put him on a month of antibiotics in hopes that Matthew could finally kick the cycle and make it to surgery at the beginning of February.  He was well for 3.5 weeks!  I think it might be a record.  He got sick while he was on antibiotics, just a week before the surgery.  Then Matthew was sick for 3.5 weeks, with a cold that took the rest of our family 3 days to recover from. And finally he recovered.  I excitedly wrote on the calendar last Thursday--"Well!"  And on Monday, the pediatrician agreed-- Matthew was well.  The clock had started!  And then Wednesday, the ENT had to dig pus from his ear.  Not well.  And today Matthew has something yellow coming from his nose, yet again.  Still not well.  Reset the clock to zero.

Issue #2- The anesthesia team is concerned about putting Matthew under anesthesia for the 3 hour procedure because they are not set up for emergency tracheotomy procedures, and they fear Matthew will need one.  I have tried to explain time and time again that Matthew has been under anesthesia 6 times and has struggled with his breathing because the tube that was used was too big. We didn't find out about the subglottic stenosis until the 6th surgery.  Additionally, I have been trying to convince them that Matthew is super baby and will not need an emergency tracheotomy. 

They have asked for ENT sign off, a rescope, and would really like him to be well for 6 weeks before surgery. I thought that was crazy-- first, Matthew hasn't been well for 6 weeks in a row in his 2 years, and to rescope his throat, Matthew needs to be under anesthesia.  Why put him under anesthesia so that he can be put under anesthesia?!?!  Thankfully my ENT agreed with the illogical rescope request, and agreed that Matthew was super baby- he wouldn't need an emergency trach.  The ENT signed off for the surgery, as long as they use a 3.5 tube instead of a 4.0 and provided they give him a dose of steroids after the procedure.  No rescope.  We are awaiting response from the anesthesia team now.

So, before surgery can be scheduled, issue #1 and issue #2 need to be resolved.  We are praying that we can get and keep Matthew well and that we can make the anesthesia team happy-- so Matthew can get a thumb!

ADA Experience

I had an experience at the mall today that both broke my heart a little and ticked me off a lot.  A few friends and I had taken our younger kids to a play area at a local mall (Memorial City Mall) to celebrate a sweet little friend's 2nd birthday.  I took Matthew's push toy because I didn't want to haul around his much larger walker.  

As we entered the play area, the security guard said that they didn't allow in toys. I explained that it may be a toy, but Matthew doesn't walk independently and this was serving as his walker for today and if there was a problem, I'd like to speak to the manager.  Nothing more was said and Matthew crawled around some and pushed around his toy as they all had a grand time.

About 45 minutes later, the security guard came back over and said it was against policy. I asked to speak to her manager.  The manager came over and told me the same thing, and added that they wouldn't have allowed his medical walker or a wheelchair in the area either.  

By this point, I acquiesced about the rule about the push toy (other kids might confuse it and it would seem unfair), but to not allow a medical walker or wheelchair in an area that could easily accommodate it, that just seemed wrong.  So I asked for that person's manager. I was met by the VP of the mall, and he reiterated the same thing, with his justification being that that the play area was a busy place. They do not allow walkers or wheelchairs in the play area because it gets too crowded.  

This incensed me.  It was no longer about Matthew's push toy, or even Matthew.  It was about all of the families that can't take their kids in the play area because either the parent or the child use a walker or are in a wheelchair.  It is just WRONG!

I was heart broken for the injustice of the situation.  The VP tried to appease me by giving me carousel tickets, or a food court gift card, but as I told him, what I wanted was for him to go back and figure out how to accommodate all the families with special needs.  We left it at that...for then.

And after I spoke with him, I cried.  I don't often feel like it, but I was reminded that I am the mother of a "special needs" child.  I have the obligation to speak up against injustices not only for Matthew but for all.  I will never be able to be blissfully unaware.  We now have a horse in the race.

So, I came home, and after the tears, I did a little research.  And not only is their policy WRONG, but it is illegal as well.   From the Americans with Disability Act:  "Some use walkers, canes, crutches, or braces while others use manually-operated or power wheelchairs, all of which are primarily designed for use by people with disabilities. Businesses must allow people with disabilities to use these devices in all areas where customers are allowed to go."

Somehow I'm a bit comforted in knowing that it isn't just an imagined injustice, but it is such an injustice, it is codified into law!  So, I'll be contacting the VP again to make sure he is aware of the ADA and their seemingly lack of compliance in their play area policies.  I hope this opens their eyes and that they amend their policies soon!

Rare Disease Day

Today is worldwide Rare Disease Day.  It doesn't get much more rare than our sweet baby Matthew.  Matthew's uniqueness (4q25-34.2 chromosome duplication) is so very rare-- he's 1 of 2 in the world! (that we know of)  It is so rare, I doubt it even registered as one of the over 7,000 rare diseases that have been identified.  But even if he is only 1 of 2 in the world, he is not alone.

Some of the facts about rare diseases--

Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. We need to be viewed as one: one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one.

The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon.  (source: the Angelman Syndrome Foundation) 

We support the Global Genes Project and all of those, like Matthew, who are affected by rare diseases.

Thank you!

The care and support we have received in the 731 days of Matthew's journey thus far has been an amazing testament to God's provisions in our darkest moments.  

We owe a huge debt of gratitude to--
-Our friends and family- without your love, support, and help this journey would have been infinitely harder.
-Our pediatrician- who has cared for Matthew with compassion and sees Matthew for the unique being he is.   If it weren't for his diligence and care, Matthew likely wouldn't have lived to see his first, much less his 2nd birthday.
-Our team of specialists- we are so thankful for the really smart doctors in the world, and are so thankful that our son is seen by an amazing team of them.
-Matthew's team of therapists- with us, who are always working to help him get to the next stage.
-The office staff at our doctors' offices- we are thankful they have worked us in when the schedules were booked, for the warm smiles for Matthew and all of us, and for the joy they have shown for Matthew's progress.
-TCH- we are so thankful that we live in a city with a first class children's hospital. 
-Night Nurse Nicole- without whom I wonder if Matthew would have been fitted for a permanent feeding tube.  She was heaven sent, at just the right time.
-Brooke Martin Photography- for capturing our family of 5, as we are, but always making us look better than we do. 
-Hoy House Blog Followers-- we've had 45,825 views of this blog-- thank you to everyone who has followed Matthew's journey and has thought and prayed for him and for us!

Mere words are not enough...but, thank you!!

Thank you!

Happy 2nd Birthday, Matthew!

Happy 2nd birthday to our sweet baby Matthew!

Matthew loves--

-blueberries.

-balls.

-dogs.

-opening and closing drawers, cabinets, and doors.

-the Peek-a-Boo Barn iTouch app.

-walking-- with his walker, or his push toys, or holding on to your hand(s).

-the piano.

-the recorder.

-music.

-crawling-- fast.

-giving big open mouth kisses and head bonks.

-being tickled on his belly.

-going to the park.

-his push car.

-playing with Alyssa and Jackson.

We feel so unbelievably blessed to have celebrated 2 years with our unique, sweet baby Matthew!  And we pray for many, many more birthday celebrations in the future!

Holland Revisited

“WELCOME TO HOLLAND
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

Some days I forget we are in Holland.  Most days, we are taking in all the sights, enjoying the experience, and noticing all the beauty in Holland.  For us, Holland has been a bit dramatic, but a very beautiful place!

Matthew is doing so well--he's relatively healthy, he's happy, he's learning and understanding, he's moving, and he's communicating.  We are so excited about how far he's come.  But once in a while, we are reminded we were supposed to go to Italy. It's pretty jarring when it happens. And it happened on Friday as we watched twin 2 year olds running around at the fish fry at church. We were reminded that though Matthew is high functioning in comparison to many other kids with chromosome disorders, he's still developmentally delayed and way behind where his typically developing peers are today. 

We landed in Holland, and may always be there with Matthew.  Thankfully Holland is a beautiful place to be.

Joyful Life

In the past week leading up to Matthew's birthday, we have been reflecting back over his journey thus far.  Like a movie, I can still see the more dramatic scenes in my mind-- the on call pediatrician showing us his hands with no thumbs just hours after he was born, waiting for the neonatology rounds the mornings after the long nights at TCH, the radiologist telling us about his malrotated intestines, watching him scream bloody murder when he ate, the hours and hours in the pediatrician's office trying to figure out what was wrong, sitting in the surgical waiting room praying he would wake up and breathe after his heart cath, helping to change the bandage on his head and being shocked by the 102 stitches from ear to ear, and the 5 nights of hearing him struggle to breathe-- to name a few.

One scene in particular has been on my mind more than the others though.  That first night at TCH, after our 2 day old sweet baby Matthew was hooked up to an IV, an NG tube, all the monitors, and under the blue lights, we sat in the quiet and dark NICU at about midnight with the oncall attending neonatologist.  In a hushed voice, she spent 30 scary minutes going down the laundry list of all of the things that could be wrong with Matthew, some which we knew and others which we feared.  From her list, it sounded as if Matthew might be in for a life of unimaginable misery and pain. It was horrific. We sat there stunned.  We cried.  We prayed to God to take Matthew if he was destined for the life of misery that we had just heard. 

We are grateful beyond belief that God answered our prayers-- he blessed us with Matthew here on earth, and Matthew's life, though dramatic at times, has been full of joy!  I will never forget that darkest night, and it serves as deep contrast to the beautiful and joyful life we live with Matthew every day.  Some of the beautiful scenes from Matthew's journey so far have also been swirling around my head this week-- watching him roll over for the first time, holding his bottle, sitting up, crawling, eating independently, drinking from a sippy cup, signing 'dog', saying "ma-ma", giving kisses and head bonks, chasing after his siblings, walking with his walker, his squinty grin,  laughing when we kiss his belly, playing peek-a-boo barn, digging through cabinets and drawers, standing in his crib, playing with his toys, and even getting huffy about at being told 'no'. 

Thank you, God, for Matthew's joyful life!