October 2012 - July 2013 Oh my...

Many have been asking about Hayden and his health, his hospitalizations and future surgery. I started this blog as a communication tool to document and explain what has been taking place the past 10 months.

Hayden has been trying to live each day to the fullest and enjoy each day in anticipation for the setbacks and bed rest required from surgery and hospitalizations.  Hayden has been vomiting for months since April, almost daily and sometimes several times daily without any answers as to why.  He has had a week of test in the hospital and 3 surgical procedures to test his gastroenterology and neurology in June.  With this post, Hayden's total surgeries has gone from 7 (all within the first year of his life) to a total of 9.

The week long hospital stay produced no answers as to why his vomiting/low grade fevers were happening but it did rule out a few major things.  Because of Hayden's "failure to thrive", and his increased "writhing", he was given a NG feeding tube that we feed him with 3-4 times per day.  The NG tube is temperary while we are scheduling surgery for a G-tube.

I love this site.  This will answer some of your questions  better than my own words, but EXACTLY how we feel: feedingtubeawareness.org/for-friends-family

This has been an exhaustive effort that we have worked to avoid for the past two years with extensive feeding therapy.  It has been quite a difficult process emotionally and has taken a toll on our family.  We are so thankful for on-line support that has been there as a resource from people across the country and from the few friends we know locally.

We all have been exhausted and overwhelmed. As a parent forging a new path, we have felt guilt and inadequacy not knowing the right thing to do to get Hayden back to feeling better and eating.  We have grown tired of the constant vomit and endless laundry.  We do not know when it will get better at this point, but we just take each day as a new start with rest and optimism.

While he has been very sick and each day has challenges, Hayden has been a pretty happy boy.  He continues with many therapy appointments (4 per week) and many doctor visits.

We do not know what the future holds for Hayden even with the G-tube.  We hope that he continues to grow and be happy.

August:

Hayden will have 6 hours of extensive neurologic tests on the 2nd.  The doctors believe that this will require sedation to hold still.  Prayers that he won't need sedation is what is at the forefront of my mind.

1. Brainstem Auditory Evoked Response
2. Nerve Conduction Study
3. Somatosensory Evoked Response
4. Full Brain/Spine MRI

http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Neurological%20Diagnostic%20Tests.aspx  This link will explain the tests.

At some point soon, we run out of tests and diagnosis.

July:

Hayden has a surgery consult tomorrow with GI.  He also has a swallow study Monday the 22nd.

While our trials have felt heavy, the simplest moments have brought great and true joy.

Hippotherapy Horse Camp.  Hayden got to go with Hanna and it was amazing!  Many wonderful volunteers and we hope to go again next year.  My prayers were answered when Hayden got this one camp in for the summer with all the medical test and appointments that he has been put through.

Scott & Garrett photobombing

4th of July fireworks on the nicest evening with a visit from Nana & Poppy.

June:

First time riding the bus to summer school!

Week long hospital stay that brought the most caring people to rescue and cheer.

May:

Last day of school picture with class of kids with sensory issues.  Love the ears covered and Hayden's sweet buddy holding his hand.  Yep, they were all boys with one little girl.

The most joyful time of all summer.  Miracle League t-ball.

April:

Kite flying and fire trucks were a day to celebrate and take a break from being cooped up in a move and packing boxes for a week.

This was the first and last time Hayden stood in his walker with his new RGOs.  He has since lost some of his balance and strength since then.  Yesterday was his first day putting the "rock star super legs" back on.

Garrett's 3rd ER trip, Hayden's first sign of GI & possible shunt issues.

March:

Easter Egg hunt

Handsome Conductor Hayden @ Easter with swollen mosquito eye:)

Morgan's Wonderland riding the train.  This is an ultra accessible special amusement park.  This trip marked the start of Hayden's symptoms.

Hayden visits his teacher Mr. D at the Rise school.  He had such a special bond with him.

February:

Kiki & Bear Paw come for his 4th birthday party and school box car parade.

January:

Hayden became a big brother to Garrett

Hayden always the ladies man.  This was the best picture of the year!

Hayden's friend Emily became the first differently abled cover girl!  Such a happy and proud moment for all our kids.

December:

Hanna brought all the presents to Hayden's room to open for Christmas morning before the parents were awake.  Look at his joy and her trepidation/satisfaction.

Rockin as a reindeer at his school Christmas party

November:

His first major tumble in his wheelchair at school.  He has a good big boy chin scar now and thankfully that is all.  The silver lining was getting to work with the school district to improve the playground.

Thanksgiving driving his powerchair after a wonderful meal.

October:

A great month showing off as the world's greatest backwards driver, Mater with his BFF McQueen, Josiah.

So proud of Daddy and him working hard to complete his first Iron Man after 6 hours!

Getting to ride and see Thomas!

Although my vision as a parent is limited, I can see Hayden's future in his eyes and through his spirit and his Christ-like attributes.  Faith is only Faith when it is tried and we are trying to endure this trial of health with a believing heart and with the desire to see more clearly what matters most.

In tough moments of humility, I have found comfort in the following scriptures:

Hayden's example helps to teach me the words of King Benjamin, "becometh as a ^jchild, ^ksubmissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." (Mosiah 3:19)

  

“Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven” (Matthew 18:3-4).