'Oh, The Places You've Been!"

Tonight I finally introduced myself to a network of parents of children with special needs, whom I've had the pleasure of being invited to share our medical story with...

Even though many of you may know our story,  it was profound for me to redocument and abbreviate our journey for this group.  I couldn't help but think of the Dr. Seuss book, but in reverse -"Oh, The Places You've Been!"  The last five years have been surreal.  I couldn't have asked for greater gift than to be the mother of my wonderful children.  They are my inspiration and heros.

Hi Group,

I know I have taken a long time to catch up and post on here… I am thankful to my friend Hilary for introducing me to and hosting this group! While I’m not in the Rocky Mountains- I am a Mom of three miracles, two of which are rare medical compilations. 

Our first born son, Ashton has Panhypopituitarism and struggles with gross motor skills/coordination in his daily activities, as well as a range of other developmental delays.  He was born a beautiful healthy 8# baby boy and slowly regressed and was classified ‘failure to thrive.’  We struggled for years and visited specialist after specialist to try to figure out why our handsome chatterbox boy was losing muscle mass and missing milestone after milestone.  The last straw was a specialist at the Children’s Hospital that looked us dead in the eye and said, “We’ve exhausted all of our efforts, we don’t know what’s wrong with your son.” We were devastated.  It was just before the birth of our second child (a beautiful healthy baby girl, Kiera) that we were finally referred to the Mayo Clinic in Rochester, MN.  Ashton was put through the wringer- muscle biopsy, swallow study, endoscope, EMG, EKG, MRI, and an endless list of genetic blood work.  Still nothing could be confirmed to be wrong with him, but he was TINY for his age (several bars below the first percentile), he was weak and could not walk, yet he was bright and verbal.  His bright mind was stuck in an infant sized body that refused to work for him.  The only three things that were established was 1: he had a malformed pituitary, which they deemed to be un-significant since there is little data on how many healthy people are walking around with odd shaped pituitary glands.  2: The chances of having another child with this condition would be astronomically rare (Mayo Clinic Director of Genetics), we have no documentation of anything like this and no genetic markers for this.  3: His growth hormone levels were very low, but they primarily pointed this toward the ‘low end of normal’ and aimed his stunted growth to be a result of poor nutrition.  WHAT!?   Yes, I was framed as a mother that was not providing an adequate diet for her child. Despite my meticulous food journals, calorie counting, high calorie diet regiment, and a healthy properly growing sibling.  With the blessing of our endocrinologist the gastroenterologist suggested a feeding tube would be the best option for our problem.  With your consent we'll go ahead and schedule surgery.  We refused, we knew better.  They were not convinced- I was framed as a fraud.  I cried for days… if Children’s and Mayo Clinic could not fix my son- did not believe me-  what now?

Well, God had that all worked out.  During our research & development phase with Ashton, I very unexpectedly became pregnant with our third child!   A third child was not in our plan- We thought we had made a long term birth control solution after the birth of our girl!!  Like I said, God had a plan. Nine uneventful months of multiple ultrasounds and close monitoring later I gave birth via emergency C-section due to an apparent placenta abruption to our little boy, Owen. To our surprise Owen was born with a smile so big, it couldn’t be tamed.  He was born with a unilateral cleft lip and bilateral cleft palate.  Minutes after his delivery we nearly lost him, he had an unexpected crash.  He stopped breathing, his system was shutting down.  Our local small town hospital (only 7 doctors for the clinic/hospital) were amazing.  They shut down the clinic at 1 in the afternoon for an all hands on deck emergency in the hospital Operating Room.  By the grace of God, good doctors, good decisions, and great medicine- Owen stayed with us.  A last ditch effort was made- one of the doctors drilled a hole (with what I could swear was a sterile Black & Decker drill- NO LIE!) into his Tibia (leg bone) and direct injected adrenaline into him.  It’s what saved him.  Once he was stabilized they loaded him onto the helicopter and flew him to Children’s hospital two hours away. 

Twenty two of the longest hours of my life later I was discharged (after a C-section!) with insanely strict orders, but I could go be with my son.   His cleft lip & palate was addressed quickly by the wonderful staff of doctors/nurses.  They explained the immediate path, terminology & long-term plan.  Okay, but we still had no idea why they could not get him consistently stabilized in the NICU.  It wasn’t until we met with endocrinology and explained about Owen’s older brother that the light bulb clicked.  They scheduled Owen for an MRI that day- sure enough he had the identical pituitary presentation on his MRI- ectopic postuitary with a threadlike stalk.  A hormone panel was ordered… undetectable levels was the phrase I grabbed out of the whole conversation.  Everything was a blur…  “Owen’s pituitary was not producing the hormones Owen needed to survive.  We would have to supplement his hormones for LIFE, his symptoms will be unique, no two cases are the same, but we will be able to compare with others with this condition.  There are VERY FEW others with this condition.  We have NO data of siblings with this condition.”  A month of monitoring, a feeding tube, and a case of pneumonia later, Owen came home.

Through shared medical information Ashton was officially diagnosed along with Owen and in May 2010 Ashton began growth hormone therapy, his life has changed in unimaginable ways.  Treatment for both boys has been very successful. Years and loads of medical appointments later we have two Panhypopituitarism (PHP) boys and a very healthy little girl.  Through online groups we have found two other families worldwide like ours- with siblings, both very foreign (from other countries) but as much similar as different from our family.  Owen requires Cortisol, Thyroid & Growth hormone daily to survive.  Ashton requires only Growth Hormone and Cortisol during major illness and teeters on the edge of full replacement hormones… but he’s still hanging on those charts!   Since official diagnosis Ashton, at the age of 4, built the stamina and strength to walk independently.  Owen is on track with his milestones, but struggles with speech (mostly cleft related) and some mild developmental delays.  Our life is a constant balancing act of physical therapy, occupational therapy, speech therapy, cleft team appointments, auditory appointments, eye appointments, endocrinology appointments, …..appointments and more appointments.  But, I wouldn’t trade it.  I wouldn’t give one of them back! Each- Ashton, Kiera, and Owen are all perfect versions of themselves, they are perfect for them and perfect for our family….  We are the lucky few that get the opportunity to know and love such inspiring little people.  We are blessed.

Thankful Taker

Kiera and I were running errands in my three hour time frame in the afternoon- after I pick her up from preschool and before Shelby has to leave for work at 2pm.  We had already made a couple stops and were in a time crunch. We jumped in a checkout line with a young woman with a few items already unloaded onto the belt in front of us.  Score! This should be quick... or not.

I realized once we were already in line for a few seconds that the girl in front of us was checking out using her WIC checks. Her items were all neatly arranged by check- she had done this before, unfortunately the cashier had not.  I realized we were in this for the long haul.  Another cart had already lined up behind ours, there was no escaping to another line.  This was going to be awhile.

It was obvious that the young woman was mortified that the process was taking so long and the people in line behind us were outwardly and loudly expressing their dissatisfaction with the lengthy checkout line.  The young woman was well dressed in current clothing... she didn't look like she 'needed' to be on government assistance.  I felt bad for her and gave her a quiet smile when she dared to glance my way.  I knew full well what she was going through...

A few years ago it was our family.  We just had Owen and our world turned upside down. Our bills were mounting and our options were few.  From the perspective of others who didn't know our situation and just 'knew' us from casual interactions or driving by our home now and then we probably looked like 'opportunists' praying on government support programs. 

Sure, we are homeowners- we had a new home on 40 acres, we were dressed nice, we had nice vehicles, nice things... and then we had a child born with severe medical complications.  Our financial security blanket became threadbare. A month in the NICU burned up Shelby's vacation days and we were using Family Medical Leave days (those are without pay), we racked up miles on our cars with $4/gallon gas, eating away from home....  After we got Owen home, in the first year he had 52 medical appointments either in St. Paul or at Mayo.  That's 52 days of travelling, eating out, arranging childcare, schedules, days off, ...and the list goes on.  The things we treasured were just that, things... things that we mostly owned and things that we owed money on. Things that we would lose if our situation was to become our new life. We had no choice, we had to put our pride aside and ask for help...   

With the help of the social worker at the hospital we were set up with a mileage reimbursement program for qualifying families, we used WIC checks to help with the grocery bills, we used Badgercare for our secondary insurance to cover the co-pays for medications exceeding $1800/month plus the expensive feeding equipment Owen would need for his food pump the first year.  We were taking... Sure, when you looked at our house, our cars, our clothes- we didn't look like we needed help, but we did.  We needed help so we didn't lose what we had worked so hard for.  It was humiliating and embarrassing to have people in line behind you at the grocery store looking at you with contempt. How could I explain to them our need? Was I suppose to 'look' poor? It was tough to live with those looks, to accept that those people will never know how much you really did need the help. And it was hard not to feel guilty as I drove home in my new Grand Prix to my beautiful home to unload groceries I just bought with my WIC checks.  The roller coaster of emotions was exhausting... I deserved those 'things' I worked for.  We spent hours upon hours building our home with our hands, I worked as much as our schedule allowed and Shelby worked days of overtime to buy the car & truck we wanted.. we earned those things... and now the very things we earned were at the center of my complex.  I felt bad for owning nice things and still 'needing' from others.   I suppose our situation is quite unique, but I am certain it's not singular. 

There are other families just like ours, taking.  Not because they are leeching the system by driving their Cadillac to the food shelf, but because that Cadillac is the one thing that they have left from a life that took off in a direction faster than they ever could have imagined.  I try to give people the benefit of the doubt and remember those times when we needed...  that well dressed young woman standing in line with her WIC checks.  I'm sure she needed the help, just like us then.  Everybody has their own degree of necessity, who am I to judge?  She only had a few things set aside that she would have to pay for herself- nothing extravagant.  I noticed a bottle of nail polish and thought- good for you! ...you still need to feel normal and have some things for yourself!

The good news is, thanks to those programs- we've made it through the toughest days and we don't need them anymore.  I will never blame my children for the new normal we have found ourselves in, we are as rich as we always dreamed... rich with blessings. While being rich with blessings doesn't pay bills, it is what our world is filled with.. and that is what we truly need.

Financially we're not making a killing, but we are making it day to day.  We don't drive those nice vehicles anymore, we sold them.  Our budget doesn't flex enough for a vehicle payment, so we downgraded to a couple midgrade vehicles that work for us. We are doing our best to finish projects on the house with supplies that we already have on hand or ones that only require a small budget and our own skill and labor.  We've downsized some things- this year we sold our gigantic golf course lawnmower in favor of a nice used lawn tractor.  The surplus cash went to bills.  Our five year plan includes a carefully managed monthly deficit, until I can get back to work full-time someday. We are becoming masters at creative finance and carefully scrutinize every opportunity to turn one dollar into two.  We also remember that you have to do things to treat yourself now and then.  We dine out now and then, catch a movie, take family day trips to local attractions...  little things, little treats.  We haven't taken an exotic/destination type vacation since our Honeymoon, but maybe in time that will happen again.  Shelby's vacation days are still primarily used for doctor appointments, but this year we've been able to squirrel some of those for actual vacation breaks for short weekend trips! We're getting there...getting where?  Where are we headed? ...I think we're on course for a happily ever after, just hit some road construction and detours along the way.  We have been thankful to have found everything we need along the way to keep us moving in the right direction...

Irish Blessing:
"May God give you... For every storm a rainbow, for every tear a smile, for every care a promise, and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song, and an answer for each prayer."