Month: August 2018

Healing Ointment

We still await lab results and decisions, we remain hopeful that daily injections have allowed most marks to subside.

Last week was tough on us.  Tough to watch your child look to you for answers you do not have.

Tough to stay strong despite your fears.’tough to start your day with an injection, even if you’re the one objecting.  I can’t imagine being the one on the other end.

Self conscious Kelsey did her best to smile and remain strong.  Though she saw the marks growing deeper in color and size.

She walked in to her after brushing her teeth with generic Eururin.  It reads HEALING OINTMENT.

“Since the needles are not working, maybe this will?  It says it is healing ointment?  Do you think it’s with a try?” she inquired with such hope.

”Maybe this will be just what we were missing,” I reply with doubt but marvel in the quest to find answers any way she can.

To hope and healing ointment…

 

 

Uncertain normalcy

When you come home from two days of testing and consultations from the NIH with a positive outcome, you smile.  Life is good.  When your child wakes up the next day with new marks, you feel disenchanted.  You feel like this cannot be happening (again).

You hope these new marks are just bug bites.  You were just tested.   You were just given a positive report.  You send the pictures anyway and await symptoms or the onset of something else.  You are in disbelief.

You shed a tear the next morning when the marks spread.

You start to worry more once the marks look like those you saw two years ago when lethargy and pain took over your daughter’s tiny legs.

You see the spread, you see the onset, you fear everything in front of you.

The village of support that surrounds you allows you to get through this hurdle, test appropriately, and inject as necessary.

You are scared and you are unsure of where this leads you.

Daily injections return to bring a sense of normalcy to an otherwise abnormal state of affairs.

You hope, you are grateful for all the doctors you have on standby, but you cannot help but feel …  something words cannot truly describe.

17 vials to Phanatic Fun

The routine response to 17 vials of blood taken to check, maintain, and sustain still makes a parent weak.

We leave the National Institute of Health Sciences feeling tired and breathing a few sighs of relief.  Two full days of testing, talking, and questions is tough to endure.  The entire visit was kept exciting because, “I am going to meet the Phillie Phanatic,” Kelsey told anyone who would listen.

Jake Arrieta of the Philadelphia Phillies had impeccable timing to offer his suite for a charitable night for Kelsey’s Kaleidoscope, Inc.  All day long, sporting her Phillies shirt and hat, Kelsey remained positive and focused on the game and a chance to meet the  Phillie Phanatic.  Thank you to the Arrieta family and our generous donors for making the evening full of fun.  Though they did not win the game, we came home positive and grateful after a long two days.

Storms we hope will pass

Each Tuesday night is unique.  The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.

Tuesday evening was no different this week.  The marks all over the belly and the back were.  After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.

Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.

The thunder outside echoes our inner fury and angst.

We hope the rain relieves the heat and our morning medication subsides our worry for another day.

Wednesday on Saturday

Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.

Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey.  The mention of the weekday sends a jolt of fear and frustration to Kelsey each week.  We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.

Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.

Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).