Tuesday, May 19, 2009

Fatigue once again, wins ....





Lots to report but just do not have the energy to report them.Instead,I will keep it as brief and as simple as I possibly can and then I HAVE to get to bed.On my nights home I am never in bed before 1am and tonight, I just have to try and make it happen.Thankfully I function well on very little sleep or I would be in some really serious trouble by now.Especially after the last 2 years.I feel it beginning to take a toll on me though and I definitely can SEE it catching up with me.The mirror does not lie and oh how I wish it did!Enough of that though,first up instead,Miss Zoey ... little stinker.Or "trickster" as our roommate Jayden's mom calls her.Lulls you into thinking she is going to do one thing and then she changes it up and does another.Just making sure we are paying attention I am convinced of that and wants to make sure we are not getting too comfy on our hospital issued cot/bed/bench,as not to miss any of her antics.Last night,2:15 am and I am awoken to coughing,gagging,retching from Zoey's bed.I fly up only to find her throwing up,or at least trying to and also,just by feel,can tell she is on fire.Thus the reason for throwing up.Fevers do that to her.From there we scramble a bit to asses things and then,finally, the big gun antibiotics come out.Poor love.She felt like garbage and looked about the same.We checked out her g-tube,which had been heading south over the last few days and we see it was REALLY,REALLY not looking good.She was already on a fairly decent antibiotic but it obviously was no match for a girl with a white count of .12!!! I don't even think that counts as a white count actually.The g-tube site was nasty looking and bleeding,which was lovely but by the end of today it was looking better.Zoey's platelets went under 5 again and with the g-tube bleeding and bruising and risk for internal bleeding,she received another transfusion of platelets.That makes 2 in less than a week which has never happened before and only proves the strength of this round.Zoey's marrow is spent.Hit hard and not finding it easy to recover.Mark called a few hours ago and she was spiking a fever again but hopefully it will settle back down and she will be able to get some sleep tonight. She is so tired, the little love but at the same time, so very charming and silly and loving and forgiving.She never,ever ceases to amaze.I have to abruptly end this.Joe has woken up and I am literally falling asleep between words.I leave you with a few pictures of my handsome guy Jake on his First Holy Communion.I will post more on that tomorrow as well as our wonderful visit with precious Preslie and her mom and dad.I forgot my camera but Mark downloaded from Michelle's camera onto his computer their photos, so I will post more on that as well.Till then pray for Zoey Grace.They were not lying when they said this round was going to be a battle.On the whole though,I can tell you, she is fairing far better than most on that floor and with that said ,please pray for those amazing children as well,please.

* Zoey was in a non picture taking mood today so ...these are about as good as it gets.As for Jake,do you see this face.This face is truly so angelic and sweet and kind hearted and loving.You can just see it so very clearly in his expressions and his body language.So proud of him.So very proud.

15 comments:

Mama Mason-Mann said...

Wow, what a handsome young man you have! You must be so proud. And what a little fighter that gorgeous girl of yours is. I am amazed by you and your family. My thoughts and prayers are with you.

Lacey said...

Jake is definitly a very handsome, sweet kid. Get some sleep mommy, you still have a little way to go, but I see the finish line, its in sight. Love from me and Jax

mommaof4wife2r said...

prayers for you all...ok, the pics though, totally made me smile. zoey's hair is getting crazy long and curly...wow! she's prettier every single day. praying for some strength for that sweetie pie...and your jake...wow! he's really sweet, in a boy sorta way!

Melani said...

Your son is so handsome and Zoey, oh she is beautiful. Get some rest. My prayers are with you.

Junior said...

Jake is a very handsome young man.

Zoey does look tired but still has that grin and sparkling eyes. Keeping her as well as the rest of your family in our prayers.

Caitlin said...

One word: MODEL.

I love that picture of him.
And I love how you can see Zoey's teeth in that picture!

Cait

stephanie said...

Heather how I wish I was close to you right now.I wish I could lighten your load.I can only send you my prayers. I never knew my heart could love and hurt so much for someone I have yet to meet.That sweet Jake! How handsome he is. Please take care, all my love to you all.

Googsmom said...

Continued Prayers for sweet Zoey.
{{{{HUGS}}}}}}

Anonymous said...

Saying a prayer for Zoey.

Bea Braun said...

1st communion was such an amazing day. Jake has such an incredible spirit and very knowledgable in Liturgy of the Word! Heather please take care of yourself. Your little fighter will be home soon and she needs her strong mommy to take her to all the fun places she's never seen! Get some rest, eat healthy, and know you have so many people praying for you.

scrappy quilter said...

What a handsome man indeed. You do have a reason to be proud. Continued prayers for your sweet little Zoey, also for her mommy too.

Liz said...

I just wanted to stop by and say hello and that I will be praying for your little Zoey. You guys certainly have more than your share of medical issues right now. I found your blog through another IS blog, but you and I have more in common than most IS moms. My daughter Maddie has leukemia also, though hers is ALL. She actually ended up with IS as a side effect of chemotherapy for her leukemia, so we are facing things in a different order.

I just wanted you to know Zoey will be in our prayers.

Thinking of you,
Liz, Maddie's mama

BeeJei said...

I have been following little Zoe's journey for some time now. I adore this little princess! I can relate to her somewhat. I was born with a rare syndrome that has only 60 recorded cases so far. I don't usually try to "promote" myself but if our blog could reach just one person who may be looking for information on Hajdu-Cheney syndrome then it will all be worth it. I ask that anyone who sees this comment please check out our blog.

http://beejei.blogspot.com

Anonymous said...

love those pics of Zoey & her daddy and what an awesome close shot of Jake = the picture does says it all - one very special little man who has been the big brother to Joe and Zoey.
Hope Zoey's counts start the upward turn and she can get home soon.(mommy & daddy also) I think things will be so much better when you are all under one roof.

I agree Caitlin : Model (Jake)

take care

Bluebelle

datri said...

Love the pics. Continued prayers for Zoey. And take care of yourself, too, Heather. {{hugs}}