Wednesday, November 19, 2014

#Champions14


I thought that I had "retired" from blogging a long time ago. Life is busy with 3 active kids, and there never seems to be enough time in the day to think, much less write. But with the once-in-a-lifetime week we experienced last week, I have felt the burning desire each day to just get my thoughts and emotions written out to process the enormity of it all.

Nathan was chosen to be the 2014 Children's Miracle Network Hospitals Champion for the state of Florida. It was an incredible honor to merely be nominated by our local Children's Hospital, and it was quite humbling knowing that in this role, he would serve as the ambassador for all pediatric patients who visit the numerous CMN Hospitals in our state. I have to admit, we had a lot of fun traveling around Florida this year attending fundraisers, telling Nate's story, and showing our gratitude to the many organizations who support the cause that is so dear to our hearts! 
The year long ambassadorship culminated in a trip to Washington DC and Orlando that was unlike anything we have ever experienced. Not truly knowing what to expect during this trip, the two phrases we kept hearing was "this will be the trip of a lifetime" and "this trip will be life-changing". Those phrases are often used for drama and flair and have seemed to loose clout over time. So understand my earnest explanation that in reference to the #Champions14 trip we took, those phrases are entirely true and are almost an understatement. 

We are not the same people we were before going on the Champions trip. It literally changed our life in many ways. 

Due to the astounding sponsorship of Delta Airlines, Marriott International, and Chico's FAS, a Children's Miracle Network Champion from every state, Washington DC, and Puerto Rico were given a week of lifetime experiences, celebrity greetings, and a whole lot of fun. These little warriors, accompanied through the week by their National Goodwill Ambassador, Miss America 2015 Kira Kazantsev, stayed in the beautiful JW Marriott in the heart of Washington, DC, met First Lady Michelle Obama and pet the first dogs, had lunch in the Dirksen Senate Hearing Room and explored the Capitol Building and other National Monuments. One night, they were treated to a preview showing of "How to Train Your Dragon" before it was released to DVD, complete with stuffed "Toothless Dragons" and DVDs for each child and a complete movie theater experience! These Champions paid their respects at Arlington National Cemetery by laying a wreath at the Tomb of the Unknown Soldier in a solemn and extremely touching service, and they later boarded a beautifully decorated Delta Charter flight with the absolute friendliest pilots and flight attendants as we all flew together in high spirits to Orlando, FL for the second half of the trip. 
After experiencing an emotional water salute from the Orlando fire department upon our plane's arrival,  the Champions were welcomed to the Disney Coronado Springs Resort with thunderous cheers and applause from hundreds of supporters awaiting their arrival. It was all any of us could do to keep from breaking down emotionally at the warm welcome! (Which, if we are being honest here, I completely soaked the shoulders of one of our Florida CMN Hospitals Associates with tears directly after this moment.) The next day was chocked full of so many highs...the medal ceremony with Nick Cannon, Miss America, and Delta Executives that honored each one of our Champions for their courage in tackling their medical challenges, meeting several celebrities, the mothers and grandmothers being honored with a jaw-dropping shopping spree and afternoon of pampering by Chicos, White House Black Market, and Soma Intimates, an afternoon where we were able to personally thank the amazing people behind each of our supporters for CMN Hospitals, ending with a Disney Character dinner and a personal concert by Lady Antebellum where the Champions were invited to join them on stage for a couple of songs. 
If that wasn't enough, the trip concluded with a magical day at Disney's Magic Kingdom, where the Champions participated in a dance party, were the Grand Marshals of the Disney Main Street Parade and finished out the night enjoying the ever popular Very Merry Christmas Party. 

So, when you read the above paragraphs, you can totally understand why I say that it was a once-in-a-lifetime trip. But what makes it a "life changing" trip? 

Well, that would be the people who accompanied us on every step of every day. These families from each state...I simply can't write about our moments and memories with them without tearing up. These children are the definition of "Champion" in every sense. Each and every one of them. They have defied odds, proven medical personnel wrong, and fought through treatments, trials, heartache, pain and pure exhaustion with every fiber of their being. They have each done so with grace, resilience, and an incredible positive attitude that inspires every person who is privileged to cross their path. And what do they want to do in their free time? Help other kids in need by bringing the much needed awareness and funds to our Children's Miracle Network Hospitals. All of this is what makes each one of them the epitome of a Champion. 

And the families behind these Champions...I looked into the eyes of these families and instantly saw a reflection of our own journey. Each of us have been on a similar, yet different, path. I saw their worry, their fear, their hearts that have been broken and mended a hundred times. I saw their joy, their wonder, their delight in seeing how much their Champion has accomplished. Without words, their eyes told stories of the nights they lay wide awake worried about the future, the times they crouched in a shower to sob because no one could hear them there, the internal pain they felt when their child was looked at differently or the tinge of jealousy that erupted from watching the complete normalcy of friend's lives.

But in the midst of the struggled that lay deep in the eyes of our new friends, we saw the pain overshadowed by the intense joy they felt each time they were able to hug their child. We saw elation in watching them experience so many amazing opportunities in the span of a week. We saw the overwhelming love and emotion well up in each parent as they sat back and watched 54 children who have met various challenges throughout their lives all meet, connect, and instantly become best friends...for life...for ever. All because of Children's Miracle Network Hospitals. 
When we didn't feel like our hearts could take anymore, we started to get to know the others who were with our families every single step of the way on this trip: The CMN Hospitals Staff, the photographers, the videographers, and Miss America...people who have devoted their lives to helping others. Each of these individuals were born with a servant's heart, and we fell in love with them all quickly and deeply. 
So when I say that we are not the same as we were before this trip, it is because of each of these Champions, families and individuals. All together, we created ONE family...the #Champions14 family. Being home to reality this week has been much harder than I ever imagined. I feel like pieces of our heart reside in every single state in our country now. But in the end, I am grateful that we know precious people all across our nation who desire to further the momentum of Children's Miracle Network Hospitals. 

We are #Champions14 forever.




Sunday, July 14, 2013

A new day


I have always said that one of the hardest things about raising a child with mito is that we don't really know what this disease will do. We don't know what next week holds, much less 20 years from now. That is a realization that has been difficult at times, but more often than not, it has given us the opportunity to be hopeful.

Neither us nor any of Nate's doctors (and believe me, there are plenty of them between the two teams here and in Houston) are able to have any preconceived notions about how Nathan's life will unfold. He could grow up to have a family of his own some day, a life apart from our immediate family, a successful career, children of his own...or he may not. Nate's head mito doc wanted to make sure that we understood the seriousness of his presentation of this relentless disease...and we do. But additionally, we also understand that we do not have any way of truly hypothesizing about how or when this disease will take over more parts of my little boy's body.
However, we know that the one who created our precious son's body does know what may lie ahead for him and us, and we put all trust in Him. We continue to pray for wisdom and guidance for us and each one one of his doctors in knowing what medical interventions we need to implement in Nate's life and how we need to proceed in different realms. And until drastic medical complications occur, we will continue to raise our son like our daughters...trying to prepare each of our children in tackling the future as adults and making their own decisions. We are trying desperately to prepare each one of them in this life by increasing their spiritual thinking, academic knowledge, and social interactions. The last two are why we are all so happy to still be able to trial school with Nate...he really needs to be around kids his own age, and he is so excited to be able to go to school and make friends on his own. I seriously can not wait for this milestone happen for my little boy!!

Since getting home, I have had a good bit of communication with our pulmonologist at Shands, who we love greatly. Over the past 4 years, we have realized that our two different teams of doctors have some strengths and weaknesses in their care for Nate...our team in Houston has seen Nate several times for 4 years now and have a great understanding of how mitochondrial disease affects him. But they are limited to the 30 minutes each one of them see him every 6-9 months. Our team at Shands may not know as much about this disease, but they know Nate very well...they know him when he is sick and well, struggling and energetic, in the hospital/clinic setting and in normal life. So one team specializes in the effects of this disease and how it affects Nate...and the other specializes in Nate. They seem to work well together, but it is sometimes hard to be the middle man between the two teams of doctors.
That being said, our home docs have been amazing in all of this!! Our pulmonologist is contacting the doctors in Houston this week to hopefully be able to get what they want in testing during the cardiopulmonary exercise test so that Nate can have this test run at Shands and save us from having to travel to Houston again in a couple of months. Additionally, she is trialing him on an increased oxygen level to see if it may make any difference in his respiratory symptoms since I have expressed concern that I am not quite sure that it is time to move to the non-invasive ventilation route quite yet. With this change, I am keeping a log of symptoms to be able to dictate accurate symptoms one way or the other to help us and others decide what interventions may need to happen. I am so very thankful for both of our teams of doctors in this situation.

All of that aside, when I think of our recent trip to Houston, I immediately try to push our difficult and negative conversations aside, as the incredible positive and fun aspects rush to my brain. Nate and I did so many "fun" things during this trip and experienced many new experiences. It truly was such an amazing time with my son that I wish so badly Jay and the girls could have accompanied!! Not only did we do our usual of playing with our mito friends from Houston and Dallas, but we used the free weekend to visit San Antonio, Texas caverns, dear friends from my childhood, and a church outside of Austin that I visited numerous times as a teenager and hold the members near and dear to my heart. I have to admit that it was so much fun introducing Nate to so many friends and family from my life before he came around. I have missed each one of these individuals so much since seeing them 15 years ago...and seeing them recently, it makes me miss them 10 times more each day! My goodness, my heart yearns to be with them all!!

So when I think of our recent trip to Texas, my mind and heart seems to be confused with emotions. On one hand, this was by far the hardest trip emotionally we have taken in 4 years...but at the same time, it was the most rewarding with friends and love from so many. And that dichotomy in and of itself makes me realize how much our God was at work in this trip...he flooded our emotions with overwhelming love, support, and friendship during a time we experienced some of the toughest emotions we have had so far...

We will remain faithful to our God. He knows what the future holds for us...and in the mean time, we will happily serve Him today...and tomorrow...and the next day.


Wednesday, July 10, 2013

Brutally Honest


"I'm going to be brutally honest with you. We are all very concerned about Nate."

It was an appointment full of some of the most difficult conversations we have had so far in Nathan's life...full of words and information that I still trying to mull around in my brain and process. This appointment with his main mitochondrial disease doctor was just one of the 4 difficult appointments we had in Houston this past week.

We are extremely guilty of maximizing the positive and minimizing the negative when it comes to Nathan's health...maybe to a fault sometimes. If anyone ever asks me the quintessential question "How is Nate doing?", my answer will almost always be "He's doing well". Sometimes, that is an accurate assessment, but more often than not, there are several negative undertones regarding his health running through my mind when I answer that question. But for the most part, Nathan usually looks good on the outside, so it is rather easy to answer "he's doing well."

So it may be somewhat of a surprise to tell you that he isn't doing as well as I portray. Looks can sometimes be deceiving.

For about 7 months now, we have been a little concerned about some changes in Nate's health...particularly his respiratory symptoms. He has been exhibiting some very unusual breathing patterns and issues over the past several months that have had us perplexed and scratching our heads. We have been very accustomed to the little guy's strange breathing issues all his life, and even these new issues have concerned us a bit. After getting a few of these episodes on video so his doctors can see what we are seeing at times, our home pulmo asked us to send the videos to Houston to see if they had any input...

To describe what is happening with the little guy...there are times where he tries so hard to breathe, often throwing his head backwards to seemingly open up his airway, and breathing deeply through his nose and complaining that he can't breathe. Those episodes are tough to watch, as it is so apparent that he is trying everything he can to get a deep breath. This is a transient problem that happens when he is on or off oxygen, but usually when he is fatigued. We have tried medications, extra oxygen, making him rest or lay down...everything we can during these episodes to help him get a deep breath, and he still gets anxious about not being able to breathe deeply. This is what the doctors in Houston have diagnosed as "air hunger".

Recent videos of Nate's breathing can be found here and here.

The other respiratory aspect we are dealing with is that Nathan is retracting from every part of his chest often these days (intercostally, subcostally, neck, etc). Something that used to only happen when he had been off his oxygen for a good amount of time has change lately. If he is even walking around with his oxygen off some of the time (and periodically when it IS on), he is retracting...and when he is active, he is often retracting badly. It is sometimes painful to watch as he moves his body in every way he can to catch his breath sometimes. This type of struggling is often covered by his shirt, but we have become aware over the past few months that these struggles have increased a bit.

Even though we were on heightened alert in Nathan's health regarding the recent changes, I severely underestimated the reaction of his mitochondrial doctors..

2 of our doctors are pretty insistent that it is time that we start a new treatment called non-invasive open ventilation (NIOV) to help expand Nate's lungs. This is a new form of non-invasive ventilation, and it isn't usually used in pediatrics. At UT Physicians, they have gotten this treatment approved for 2 of their pediatric patients a bit older than Nate (with lung disease, not with mito), and it has worked well for them. Both our mito pulmonologist and head mito doc thought Nate would be a very good candidate for this treatment.

In order to help prove that Nate may need this equipment, his doctors are requesting cardiopulmonary exercise testing done on the little guy. This is strenuous test that will help show everyone whether his respiratory issues are metabolic (what they think), lung, cardiac, or neuromuscular related. The current theory is that his breathing issues are due to the fact that his threshold for anaerobic metabolism is extremely low.

Based off clinical symptoms, labs, and the biopsy, Nathan's mitochondrial doctor has always thought that he suffered from a mitochondrial depletion syndrome. She was somewhat interested to learn that he has a mutation on the SUCLG1 gene on his whole exome sequencing. This is a novel mutation that is known to cause mitochondral depletion syndrome. Nate only has one mutation on this gene, so she ordered a CMA to test for deletions on the other allele of this gene and is calling Baylor to check for more information on this gene (particularly, the proteins involved in controlling mitochondrial function).

His cardiology appointment in Houston gave some more info. His doctor was concerned about his blood pressure and heart rate when active. Nate also had an arrhythmia during the appointment...something we have recorded in the past, but only when his body was stressed. The hole in his heart was clearly evident in his echo, and we are continuing to keep a close eye on it to see if it may need closing in the future.

All in all, the appointment aspect of the past week has been emotionally taxing. It has truly been a very difficult few days full of tough conversations. That aspect has been harder than I can ever explain in words. But on the flip side of that, we had MANY positive encounters with friends and family and amazing memories that I hope to expound on at a later time. And his mito doc said that she still approved for my little man to start public school next month, which is what we are all so excited about!!

So as I lay here in a hotel room, I look at an empty bed to the left of me. My precious little boy...who is all boy and likes to shoot guns and pretend that he is Luigi in Mario Brothers and laughs when someone says "poop" and can make a pencil look like a sword slaying whatever villain he encounters and always reprimands me if I say "little" in regards to him...my sweet baby boy wants to sleep right next to me every night that he can during these trips out west, and I savor those moments.

I love him. He's my baby boy.

Tuesday, April 16, 2013

1.169 million blessings...



"I can't imagine what you all have gone through in Nate's life."

It's a statement that has been uttered to us countless times over the past 5 years, but none before evoked the kind of emotion that this time did. The empathetic sentence was uttered by one of the dancers at the Stephen C. O'Connell Center at the University of Florida Saturday evening as she participated in the 26.2 hour Dance Marathon that raised money for Shands Hospital for Children at UF.
We had made our way down to the dance floor to enjoy the festivities and help boost the morale of the dancers who had to stay on their feet for the entire 26.2 hours, showing enormous support for the trials experienced by the children who grace the walls of Shands. But instead of us boosting the morale of these dancers, they boosted our's.
Being surrounded by over 800 students dancing "for the kids" and several hundred more working hard to make sure the event went smoothly, coupled with the subject of the conversation, was almost more than my emotions could tolerate. I never envisioned any of this in our life when we were forming our family...the heartbreaking realities and the intense uplifting moments that shine blinding light through the darkness. I never expected any of this.
My eyes filled with tears as I tried to explain to her that while I would love with everything in me to take away the medical burdens of my son, none of us would have experienced any of this if it weren't for his trials. It's a dichotomy of feelings that is quite difficult to explain sometimes. We would not know the hundreds of people who have made a lasting impact on our hearts or lived through the immeasurable blessings in his life and in our's if it had not been for his broken body. Nate's difficult plight on this earth has given all 5 of us more blessings than we ever thought possible. God has a plan for all of us. And through His plan for our family that has been so excruciating at times, the light that has come from the individuals placed in front of us along this journey has enriched our lives beyond belief.
We were privileged to witness history this weekend. Because of the hard work, passion and full-time commitment of the overall team and captains all year long, the incredible fundraising efforts by each student, and the persistence and strength portrayed by each dancer, Dance Marathon at the University of Florida raised an astounding $1,169,722.16 for the kids at Shands Hospital for Children at UF. There didn't seem to be a dry eye in the entire O'Dome when the ground-breaking total was revealed. It was truly a remarkable instant in each one of our lives to witness such a highly emotional moment in time.
1.169 million blessings in our life and in the lives of countless others...

Two worlds. One family.

THE DANCE MARATHON FAMILY!

FTK!!

Sunday, February 24, 2013

5 years


My dearest Nathan,

You laid in your bed snuggled up beside your stuffed Mario, Stingy the sting ray, Oreo the black and white cat, your little gator, and several other stuffed animals that made their way to sleep next to you.

"I love you all the way to Publix and back" you said, starting the nightly ritual I love so much.
"Well, I love you all the way to Target and back" was my reply to this sweet little game we often play.
"I love you all the way to Mario Kart land and back!"
"Hmmmm, I love you all the way to Texas and back."
"Oh, that is a long way!" you said, thinking hard about your next answer to trump the distance to Texas that you are all too familiar with. "I love you all the way to heaven and back!!"

This year has been quite incredible as you have flourished in both health and personality. You have been blessed with an amazing gift, my son...the gift of making a positive impact and changing the lives of those you encounter. Through the unusual and often difficult adversities of your life, you can show others how to live happily and joyfully through intense hardships. Your actions and attitude speak volumes to those around you. Your bright smile and immature humor often brightens the lives of each person you meet. You have been given a gift from God, my dear Nathan...the gift of the ability to triumph through trials.

You have always had quite a charming and magnetic personality, but it seemed to grow even more this year...probably due to the fact that you have consistently felt so much better this year than in previous years. Participating in quite a few public fundraisers and venues through Children's Miracle Network lately, your father and I often marvel at the fact that you seem to know when to turn on the charm. You do not seem to have a shy bone in your body, and your timing is often impeccable with various waves, smiles, sayings and jokes. The impact you make with your exuberant personality is quite incredible to watch from a parental standpoint.

But the aspect of your life that I have enjoyed watching grow the most as you have grown older is your depth of love for those around you. Due to the fact that you have endured more painful tests, annoying exams, and being poked and prodded by seemingly hundreds of strangers through the first few years of your life, I honestly totally expected you to be leery and stand-offish when it came to meeting new individuals. However, the contrary is true. You are not at all afraid of new people...much to my amazement. You fall in love with others quickly and deeply. You have a "wife", many best friends who are much older than you, and you are constantly trying to figure out how to interact with kids your own age (something I hope will continue to develop when you enter kindergarten and are actually around kids your own age). You hug freely and genuinely love most everyone you meet.

And I hope you are aware that you are loved by countless others, my Natey boy. I feel so incredibly blessed and fortunate to be your mother. The amount of people who have been touched by your life is simply amazing, and I am quite humbled by the fact that I am the one who gets to help you dress in the morning, help you with whatever you need through the day, and tuck you in at night. You know that I love you with all of my heart, but I hope you also know that there are so many others in this world that love you...think of you often...and pray for you. My son, your life is an incredible blessing to so many.

I love you all the way to heaven and back, my precious Nathan Andrew. Happy 5th Birthday!



Saturday, February 2, 2013

Overwhelming Peace


We stood in the cul-de-sac several feet from one another as we took turns helping start and balance the new spiderman bike. "Pedal, pedal, pedal!! Keep your eyes straight ahead!! Keep pedaling!!" were the repetitive pleas being shouted through the crisp air of the winter morning.
My thoughts were almost instantly transported to the days when we would sit in the livingroom floor with just a few short feet in between us. With our arms stretched out in anticipation and with gentle encouragements of "Come on. You can do it. Walk to Daddy.", we would cheer on with pure excitement at the unsteady and drunken-like gait of the little guy. It seems that when you are presented with reason to question your child's limitations in life when they are just a few weeks old, the elation you experience while witnessing these monumental milestones is much more intense than usual.

It wasn't until a little over 6 months ago that Nate was finally able to ride his tricycle. Having enough strength, stamina, and coordination to master that task just took a bit longer for him. Once he received a "big boy bike" for Christmas, he instantly wanted to try to learn to ride it without training wheels and has been hounding us to teach him ever since. Standing in that cul-de-sac with him this morning as he tried so bravely to learn this new skill was a little surreal. He still has a long road of practice before learning balance and his little legs wore out very quickly, but the skill is there. I have no doubt he will be able to ride just like his sisters someday soon. I never imagined he would be where he is now.
We sat in a room with a long conference table the other day, across from educators and a nurse, and discussed what will be needed to make Nathan's introduction to public school and kindergarten possible in just a few short months. I explained that yes, we did realize there was significant risk involved in this move. But at this time when he is more prepared for success and healthier than he has ever been, it is a risk we are willing to take. My baby boy...in school. I never imagined he would be where he is now.

I sat with his physical therapist yesterday as she conducted routine strength and agility tests on the little man. We have been marveling at the incredible surge of strength and energy he has had over the past year, but it was even more amazing to see it in black and white from the test's interpretations. Nate has been receiving physical therapy about once a week since he was 6 weeks old. Yesterday was the very first time we have been able to say that he is finally "age-appropriate" and caught up on his gross motor skills. I never imagined he would be where he is now.
This past year has been simply incredible. I believe that the combination of his gastric stimulator and adequate nutrition, the starting of a medication to help control his symptoms of dysautonomia, and the introduction of subcutaneous immunoglobulin therapy have all been extremely instrumental in the amazing changes we have seen in Nathan. Sure, there are still little tweaks needed here and there, troubling symptoms popping up periodically, and days where his body struggles greatly. But those times have been significantly less over the past year than in previous years, and these longer periods of respite have given way to so much positive growth in every aspect.

Raising a child with this disease is exceedingly difficult at times. The unknown aspects of the future often weigh quite heavily on our minds, and we constantly struggle with the knowledge that things can take a dramatic turn for the worse at any time. This often causes any periods of growth or even a good plateau to be secretly overshadowed with the "waiting for the other shoe to drop" feeling.

But sometimes...just sometimes...the positive feelings push aside most all of the worry you have lived with through the entirety of their life. And all you can do is rejoice in these days of overwhelming peace.

I never imagined he would be where he is now.

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