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).

New Permobil Power chair Koala & SNAP swim therapy

I uploaded these in fast/low resolution.

We celebrate all our kids first mobility movements, rolling, sitting up, crawling...Hayden's mobility first happens to be driving without a permit!  Check out his smile.  He was so happy to go over bumps.  

Hayden got this custom camouflage colored wheelchair.  That way you notice him and not his wheelchair.  They don't make invisible just yet:).  It is such a joy to see him become more independent. This 350lb chair with a 3 yr old driving is like having a bulldozer in your home.  That is why we are practicing in the drive way.

We started the process last year in anticipation for this coming into our home and vehicle.  It really changes the family "normal".  I once cried at the thought of getting a wheelchair and now we are so very happy for the independence it is going to give my super cute boy.

One of Hayden's 5 daily/weekly therapies is swimming.  SNAP stands for special needs aquadic therapy.  Hayden was unable to relax or hold & control his breath.  Look at his progress since he started just a month ago.  He now kicks his legs with them stretched out and closes his mouth.  The added bonus at the YMCA is that Hanna can enjoy swimming too.

Wheelchair and HKAFOs

Some of you mothers and fathers know what I am talking about when I make this post...

6 therapies a week, full time private special needs school, lots of fancy custom expensive equipment, but seeing your 3.5 year old stand by himself for the first time...PRICELESS!

 First time standing up in HKAFOs (hip, knee, ankle, foot orthotics) not a problem and loved it.

These beauties cost north of $7,000.  

Thankfully our private insurance pays a portion for new every 6 months, while Medicaid picks up the tab.  Say what you want about government entitlement programs, for us Medicaid has been a God send.  

We would not be able to afford most of what it takes to help give Hayden the chance at a full life.  We are so thankful to all of you paying your taxes so that we can afford to provide for him.  Here is some of what your tax $ in Texas goes to.  

OK, I'll get off my soap box now.   I feel better about that PSA. 

How cute is that diaper tushy?!

 Second time got a little scared but here is how he looks.

 Hayden has had his new wheelchair for over a month now.  You don't even want to know what this cost.  It took 8 months before we got it in.  I am learning patience as everything of value is worth it.

 Hayden for the first time is learning independent mobility.

 Hayden playing serious with catch.  We continue to work on co-ordination.

Hayden turns 3! Carnival party

 This year we invited all of Hayden's Rise school class and a few other long time friends to our back yard Carnival.  We were blessed to have a nice warm Saturday in February.  Mom was a gypsy and dad was a clown

Scott was the best grilling clown around.

 2 of Hayden's buddies with Spina Bifida came to help celebrate.  Hayden's BFF Josiah came and shared gold fish & Savannah had a good time running around.

Silly Sparkels provided magic and face painting for all the kids.

Hayden became Batman & Hanna was a butterfly.

There were many games for all abilities to participate.  Above was the prize table with many prizes based on the # of tickets.  Cotton candy, circus cookies, necklaces, bubbles, candy, rubik's cubes and cars.  Unfortunately we had no ticket keeper to be on prize patrol:)

Treats were plentiful with carnival soda, apple juice, mint & lemon water, mini caramel apple bites, lolly pops, gold fish, swedish fish in blue jello, funfetti cake batter chex mix, hamburgers and hot dogs.

The popcorn machine and cotton candy was great fun.

Hand painted marshmallow popcorn cupcakes were the treat along with Hayden's BFFs mom, Angie's, custom carnival cookies.  She made a couple dozen and they were gone in a flash.  They sure looked cute!  Wish I had eaten one.

All abilities games:

Lion Tamer Photo booth in the big top tent (set up and lent by a dear friend)

Bean bag toss & ping pong toss

Lots and lots of bubbles...

playscape for pirates & flying trapeze 

Magic clown & pony rides

All of this was photographed by the lovely Gaga aka Grandma Mary Hanna who wasn't in any of the pictures but helped document this wonderful day for us.  We were also blessed to be able to freely host it as Hayden's respite nurse Christy (who moved to AZ) provided us with being Hayden's transporter.

Hayden loves all things that go!  Fire trucks, school buses, trains, tractors, cars.  He loved ALL his presents and they were all very thoughtful.

This last picture wasn't taken at his birthday party but at a friends.  My friend Michelle is the best face painter I have ever seen.  Just had to include it.