Wednesday, October 8, 2008
Fear Came Calling ......
It's a two part post.First order of business:the birthday girl. My little Taylor Morgan.My baby of the first set.My child that I watch effortlessly finding your way with poise,grace and spunk.And ... occasional attitude.Today is your day.17 years ago,at 1:10 pm you entered this great big world.There in the delivery room, of course Dad but also, grandpa.As you know,grandpa's mom,your great-grandmother,left this world that very same morning.We all experienced that day,first hand,the circle of life.Sad on many levels but so beautiful in others. That God had seen fit to call her home but bestowed upon us, the blessing of your life.All 8 pounds 7 ounces of you and ...... your grandmothers eyes.Although they have changed in color a bit, I still see her, in you.I am so very proud of the young woman you are becoming.You are confident and self assured,focused on who you are,not ever afraid to speak your mind and speak up for what you believe in.You walk proudly and never compromise your internal moral compass, for the sake of conformity.Your work ethic is unparalleled.You flip those burgers like no other and do it with a smile.Long hours and no complaints, ever.In N Out is lucky to have landed you.You wear the red apron proudly!I love to see you with your brothers and sister.The love you have for them and they for you,warms my heart and allows me to glimpse the future as to what kind of a mom you will become.I love your boyfriend Taylor.You chose well.You dad and I are in awe of the two of you, that you will,after a long nights work and a gruelling school load and football (Brandon,not you!),drag yourselves out of bed each and every Sunday and get to church together.That speaks volumes.I love your smile,your quirky style and your cute nose ring.You have evolved and have come into your own and that is beautiful to see.Have a happy,joyful day Taylor and know I love you beyond words.Now, to the baby of the second set,Miss Zoey and the next part of the post:We have had a roller coaster of a ride the last few days.Zoey has been battling fevers of unknown origins and they have baffled us, as to what may be going on.After debating a bit,I finally broke down and headed to the pediatricians.Our regular doctor is away and he has left his very competent partner in charge.She only works one day a week now and even though at one point Zoey was there at least once a week,she still doesn't know Zoey as well as Dr.Kundell does.But we love her and trust her so off we went praying for ear infections.You see,since Zoey was born with TMD,transient myeloproliferative disorder, we absolutely cannot stand unexplained fevers and change in disposition without outward symptoms.Very nerve wracking.Down right scary.Only 10 % of children born with Down syndrome will be born with this rare blood disorder and of those 10% ,30% will go on to develop full blown leukemia.Specifically AML.A fact that terrifies me.As of note also, is that people born with Down syndrome are 30 times more likely,than you or I, to develop leukemia in their life time.Most before they are 5 years old and the majority before they are 3.So Zoey is entering a very critical time as far as her disorder goes.That is why it is imperative we get her blood checked every 2-3 months and that we pay extra close attention to unexplained bruising,petchia and any out of the ordinary behavior.Sleeping more,lack of appetite,irritability.I am so in tune to Zoey.So much more than I ever was with my other children and I have rarely been wrong when it comes to something having to do with her health.That in and of itself scares me to death.There are some things I hope to be wrong with and today was a prime example.We had the preliminary white count back by 6pm but there was some hold up with the rest.Usually,not always,the indicating factor pointing to leukemia, is a high white count.Normal 6- 11 thousand.At birth Zoey's was 150,000.This required a total transfusion of all of blood in her body,twice before she was 12 hours old.Today her count was extra low.3.2.It's never been that low.First indication points to her having a virus of some sort.But and it's a huge but .... it can indicate big trouble as well.AT the very least the low white count could also leave her opportunistic to infection, due to diminished ability to fight of germs.Now we had to wait to get the other numbers.2 and 1/2 hellish hours later we had them.The three bands within the white count that they look at to see if one factor is fighting another,all looked good.Red count good.Platelets ...not so good.50,ooo.Another factor off.Hate that.Normal should be around 150,000-250,000.Zoey was born with 17,000.It has taken her till this past August to get to 150,000 and to drop to 50,makes me nervous.Next step was calling the hematologist/oncologist at Childrens.We got a great guy on call.He felt comfortable waiting until morning.Conferring with Zoeys regular hem/onc doctor and figuring out the next step.Hopefully what we are looking at is a virus within her marrow.One she can kick on her own,quickly.Today was a reality of our life,Zoey's life and the way we have to care for her and the knowledge we can never just assume "it" is nothing.I felt the urge to swallow a xanax and have Mark break out the frozen pitcher of margaritas to take the edge off.I felt myself breathing deeply and fighting the urge to throw up.I felt the urge,the one I eventually gave into,to drop to my knees and ask God to calm my fears and allow me to accept His will,even if the very thought seemed more than surreal.In the end, this evening, I will sleep.Hard as always.Exhaustion winning, opposed to anxiety.Tomorrow we rise.Make a turkey.Celebrate Taylors day and remember to soak in the moments of our time together,knowing that once again the lesson of the fragility of it all came and paid us an unwelcomed visit.
Zoey never or rarely sleeps any other place except her crib.This evening,around 6,I laid her on the floor while I got her milk and medicine ready.I could see her eyes fighting the sleep from the kitchen.I watched her roll over and when I cam over to feed her ..this is what I found.Poor baby.G-tube fed her,dressed her,put her to bed and at this moment,12:30am ...we haven't heard a peep.Pray for her please.