Saturday, May 14, 2011

Sweet Peyton Turns Five!

Peyton Elisabeth Fontenot - May 15, 2006

Peyton came into our lives on Monday, May 15, 2006 - the day after Mother's Day.  She was 7 lbs 0 oz and was 19 5/8" long.  A long, high-risk pregnancy was over for me, but an adventure like no other was about to begin.  Our family was very quickly thrown into a medical world that we weren't prepared for.  Born with several issues, Peyton was going to require more care and attention than I could ever have imagined.  I never knew 5 years ago that an infant could have cataracts.  I never knew an infant only a couple weeks old could wear bi-focal glasses, much less contact lenses!  I never knew my own life would hang in the balance in a hospital ER when she was two weeks old and was having surgery (I must be part cat - a few of my nine lives are used up though).  I never knew....I never knew so much.

Peyton - Age 1

By age 1, the child you're looking at in the above picture had already had eight surgeries!!  She had already had four overnight hospital admissions with ten total days spent in the hospital (not counting the time spent when she was born).  We learned a lot about patience in this year of uncertainty.  To make it to May 2007 was, to us, a miracle.  We had no formal diagnosis for Peyton's issues.  We still don't!  We were immersed in the medical world very quickly and had to learn much about ophthalmology in particular during this time.  All her surgeries were eye related.  This beautiful little girl is legally blind.  She had cataracts removed and has no lenses in her eyes.  But she can see.  I mean, I don't know what she sees or how she sees.  I just know that she can see things beyond what you or I can see.  I just feel that about her.  Sometimes when she's looking off into space - perhaps having an absence seizure lasting mere seconds - I think maybe she's having a visit with one of the many angels who I believe are watching over her.

Peyton - Age 2

Within a couple months of her second birthday, Peyton had yet another glaucoma surgery, her first of four surgeries in this year of her life (12 total if you're counting).  She had a part of the top of her spine removed at C1 in a decompression surgery (a "laminectomy") in August 1008.  Ear tubes and an adenoidectomy were the order of the day about a week later.  She had another eye surgery later on.  Just before her 3rd birthday, Peyton had her first bout of pneumonia.  Little did we know that this would start a trend - a series of respiratory illnesses which have plagued her to this day.  Physically, she was probably at her peak during this time.  Look at her sitting - so happy!!  This picture makes me smile.  And the hair!!  I'd love for her to have her hair like that again.  Physical inability to sit/stand, meds, and ill-health have not been kind to her hair.  But she's got crazy hair now and I love it.

This year stressed to me that I couldn't do it all.  I was working full time but when her health began to decline shortly before her 3rd birthday, it became apparent that I had to quit working in order to take care of her.  It was a necessary, yet ill-timed, event in our lives.  I quit my job when we weren't financially prepared to do so.  It was necessary for Peyton.  Thank you God for giving us this incredible opportunity for growth.  Our eyes were opened to the good and bad of life.  We were at last given the clarity to see that we needed to make this change for Peyton's sake.  We needed to enter this unknown territory for my personal sake.  Entering this new territory was an incredible leap of faith.  The day I handed in my notice set us on a course that would change our family forever - for the better.  We moved to Charleston, SC from Houston, TX when Peyton was 2.

Peyton - Age 3

New ear tubes came during this did a g-tube.  It was a good year - only two surgeries!!  We were trying so very hard to get Peyton to feed with a bottle.  It was messy.  It wasn't good.  It wasn't working.  She was throwing up a lot.  Turns out she was asprirating.  Whatever was going in her mouth was likely going into her lungs as well as her tummy.  Hence the g-tube.  The g-tube was a Godsend.  It was not something we desired, but again, we were shown the necessity it was for her  Over the last couple years, it's become a blessing...and a curse.  But I can't imagine today having to administer as many meds as we do without a tube in place.  It would be impossible.

Peyton started school as soon as she turned age 3.  She has been in the pre-K disabilities class at Daniel Island School since this time.  She gets a regular teacher as well as PT, OT, speech and vision therapies.  This is in addition to private in-home OT and PT.  We try so hard to make sure Peyton gets everything she needs even when she isn't able to give everything she's got.  It's such a struggle for her.

Thank you God for blessing me with a child who has been through so much, who takes it all in stride, who very seldom ever fusses, and who I never have to worry about when taking her for a procedure.  She's as calm as can be and doesn't require any light sedatives before being taken into an OR.  She's so easy-going.  She's the perfect model of happiness and of what I should strive for - just taking each day as it comes, fearing nothing, and knowing more love than one could ever dream of.

Peyton - Age 4

Age 4 was not nice to Peyton.  She had a really rough time with vomiting for a long time.  It resulted in a major surgery - a Nissen Fundoplication - where the upper portion of her stomach was wrapped around the lower esophagus to prevent her from throwing up and reducing the risk of aspiration.  Since this time, the surgery has either come undone or just doesn't function anymore.  It was a huge deal to have to do this surgery but it was necessary.  It was so beneficial to her though.  Not long after this surgery, she began to have seizures.  It lasted about a month, but that first one - the one that sent her to the hospital in an ambulance - was very scary.  She's still on meds for seizures, but thank God hasn't had one since November of 2009!  In January 2010, she was diagnosed with Hydrocephalus and wound up getting a VP shunt.  At the same time, she had port put in - an indwelling 'permanent' IV line.  She was starting to wind up in the hospital a lot and her veins were shot.  Her port has saved her so much agony since it was placed.

Hospitals began becoming a way of life for Peyton by this point.  She spent a few weeks (in total) in the hospital at age 4.  I learned a lot during this time.  I'm always learning from her.  But I learned even more so that life is so very precious.  Not that I didn't know that, but when you see your own child being sick so much and requiring so many surgeries that are so not the norm for just about makes you take stock of what you do have.  It makes you put life into perspective.  When you spend a lot of time at the hospital, you see how bad your own child might have it - but I also see that while she may be "the worst" in terms of our own circle, there are so many kids out there who are by far worse off than she is.

Peyton - Age 4 1/2

At this point in time, Peyton has had 19 surgeries, 21 overnight hospital admissions (not including when she was born) involving 75 overnights in the hospital, and 33 general anesthetics for all surgeries and procedures she's ever had.  Illness has plagued Peyton for the past year, although she's been relatively "stable", keeping things at bay with more meds since about mid-November.  She's always on the edge of something.  She's got more physical deterioration and regression happening.  She's not the same physically as she was a couple years back.  She's growing, though.  Oh, she is growing.  She's now 37 lbs and about 42" or so!!

Peyton keeps me on my toes.  We have some wonderful nurses who have been assisting with her care for the past several months.  Dealing with people all the time isn't easy.  It's hard having so many appointments, both in home and out.  It's hard having people in your home all the time - up to 84 hours a week for nursing alone (if we ever actually get our hours!).

If it weren't for Peyton, we'd have never wound up in Charleston, SC.  Ron needed a new job when I left mine.  That took us to Charleston.  A horrible church experience led to a distancing from God, which eventually led us to find Him again - through Seacoast Church. We've found a family there.  We've found acceptance and love.  We've found friends.  We've found a life.  We would never have found what we have there if it weren't for Peyton.  Everyone has a purpose in life.  It's hard to know sometimes what someone's purpose might be when they are so physically and mentally limited in what they can do.  I'm here to tell you, Peyton has purpose.  Peyton led us to this life - a life we're still cultivating - with God.

I thank God for Peyton.  It's not easy.  It's very challenging.  It's the biggest challenge of my life.  I'm not perfect at it.  I'm exhausted.  I'm worn out.  I'm stressed out.  But I thank God for this life.  It's often not easy to say that at all, especially in the midst of a crisis...and there are many crises.  But I do thank Him.  Peyton is a blessing to me and to our family.  I have learned so much from her - more than I think I could ever teach her.  I've a lot left to learn.  I could be so much better.  I'm promising Peyton that I will try.  That's all I can to just try.

Psalm 139:14 (New International Version)14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Philippians 4:13 (New Living Translation)13 For I can do everything through Christ, who gives me strength.

2 Timothy 1:7 (New Living Translation)7 For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.

Jeremiah 29:11 (New International Version)11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.


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