Confessions Of A CF Husband: CFHusband Goes Bald

Confessions Of A CF Husband: CFHusband Goes Bald

Please check out this link!  I keep up with this awesome family, and would love for you to check it out, too!  The Lawrensons are amazing people, and I have learned so much from them since finding Nate's blog a few months ago.   I ask you to prayerfully consider donating to this great cause to aid in the fight against Leukemia and Lymphoma!  

Nate's wife, Tricia, has Cystic Fibrosis.  She was blessed to have a beautiful baby girl this year followed just a couple months later by a double lung transplant.  She has recently been diagnosed with a form of cancer that can occur after lung transplants.  She is going through chemo now to fight it.  As for the CF, well, there is no cure for it either....yet!  Nate is always looking for support for that cause, too.  I have prayed for a cure for many years.  I know a sweet angel in heaven who lost her battle to Cystic Fibrosis when we were in the 8th grade.  Jennifer Byrd was a precious friend and she taught me so much about life and faith.  I urge you to support the fight against CF and Cancer!

A Lesson in patience: Days 7, 8, and finally 9!!!

Days 7 and 8: (total time about 15 minutes)

Day 9:  (total time ZERO!).

I don't think I ever explained it, but when I say total time, I am talking about the time it takes for them to stay upstairs (and presumably fall asleep) after we tuck them in for the first time.  I thought 15 minutes was as good as it was going to get.  I thought we would never get to the point where they didn't come down even one time.  Well Folks, I was mistaken!

Today, on day 9 of our bedtime battle, they didn't come down even ONCE!  

It is a happy day in the Mileski house!!!  Let's just hope it lasts.  I do have a new secret weapon though (thanks Amy E), but I'll talk more about that later.....I'm beat!

Check Up Time....X3!

Among about a million other things, this week included check ups for all three "kiddos" (as Lucy likes to say).  Maybe not the best decision in the world....but it couldn't be avoided.  We have been gone so much that it made it hard to fit everything in.  So this week it was.  I didn't want to do them all on one day, so I made Reeves' appointment for one day and the girls' appointments together on another day.  I had "hoped" to do them all separately in order to spend time with each one alone, but I just couldn't swing it.  It all worked out fine....crazy, but fine.  7 shots, 2 finger pricks, 2 "pees in a cup", and 2 lively conversations later....we're all "checked" out.  I say "2 lively conversations" because my pediatrician (Dr. Lillian Israel) is an absolute HOOT, and she just knows what to do with kids.  My kids are complete HAMS around her and like to show off all their "tricks"....it is pretty hilarious to watch!   

I must admit that I have been a bit anxious about this round of check ups.  It seems like every other week we hear of another sweet child being diagnosed with cancer.  We have been praying for several kids lately, and it has brought about many questions from Reeves and Lucy about sickness and God's plan and death.  Heavy stuff for a 6 and  4 year old, but important I think.  It is amazing to me how much they care....how genuinely curious and concerned they are.  It has made for many deep and heartfelt prayer times, and it has made me think.  I just CAN NOT imagine going through such a trial with one of my babies.  I know that God will only give me what I can handle, and I pray that if He calls me to face such a trial that I will face it with the grace, courage, dignity, and never-ending faith that the mothers of these children we are praying for have.   You Are AMAZING!

As for my babies, they are strong and healthy.  Of course Greer has her birthmark and all of the concerns we still have (and will always have) concerning that.  She is seeing great results from laser treatments (next week will be Treatment #4...her first with Anesthesia) and so far shows no signs of Sturge Weber Syndrome.  She will most likely have an MRI sometime after she turns 1, but we will just continue to pray for no signs or symptoms to appear (glaucoma, seizures, developmental delays, etc..).  So far so good!  God has carried me through this with "mostly" grace and calm and I know He continues to be right by my side.  The peace I have lately about this is just unbelievable....only God is capable of giving me this sort of peace.  

I'll leave you with the pertinent STATS:

Reeves:  6 years old

48 pounds (50%)

46 1/2 inches (50%)

Lucy:  4 years old 

  38 pounds (75%)

  40 3/4 inches (75%)

Greer:  6 months

     18 pounds 10 ounces (90%)

     29 inches (off the CHART)

 

A lesson in patience: Day 6!!!

Day 6 (total time 14 minutes!)

I am probably being optimistic, but this just might be my last post on the bedtime topic!  

HOOOORAY!!

Chris left me tonight to go to a Steve Green concert (a lifelong obsession of his, if you know Chris), so I braved it alone.  I was really worried how this one might go since we had such an atypical day in our little world.  Reeves was not quite 100% after his night of vomiting and day of tummy troubles, and the girls both had checkups today (which included a total of 7 shots and 1 finger prick).  Let's just say, we weren't all at our best!  

Even after all that....we did GREAT tonight!!!

Greer went down at about 7:30, and after that we had a great time cuddling and Lucy did my hair!  I gave them till 8:30, then it was bedtime.  

With NO fight, they brushed teeth, went to the bathroom, and headed upstairs.  We read 2 books, said prayers, and I tucked them both in at 8:45.  

Here came the trouble.  It was a bit of a crying frenzy with Lucy jumping out of bed about 4 times.  She finally stayed put when I threatened to tell Daddy.  Reeves only got up twice (saying his tummy hurt, even though I knew it really didn't).  

I headed downstairs, followed by Reeves (whom I sent right back up), and then I waited.   At 8:59, Reeves came down one more time.  I kissed him and sent him back up.....and that was it!

YAY!

A Lesson in Patience: Day 5!!

Day 5 (total time 22 minutes!)

OK, I must say that I am now a believer.  Keeping up with the specific numbers day by day is making an impression on me.  I am amazed that this is working as well as it is, since every couple of nights we have let him fall asleep on the couch.  

Tonight we had our dear friends, the Enseys, over to have dinner.  We had a really nice time, and I was expecting tonight to be a big battle because of the stimulation.  I was very pleasantly surprised!!  They headed home at 8 and we pretty much started the bedtime routine as soon as they left.  Officially, we started at 8:30 after reading a book together on the couch.  After changing to pjs, brushing teeth, and heading up stairs, we tucked them both in.  I said prayers with each of them, and Reeves begged us to lay in the hallway.  Again!  We just said, "nope, buddy, you know we will be right downstairs and we love you".  We quickly came downstairs, ignoring Lucy's cries (it was again contagious, but this time she stayed in bed).  Reeves followed us down, but we threatened to take away Power Rangers again, and he was back to bed pretty quickly.  He came down a couple more times, but went back up on his own after more threats.  

By 8:52, he was down and out!  

It's working!  There is hope!

The Wedding, Part III: The Reception

I never realized that a wedding weekend could be so absolutely thrilling for little kids....boy, was I wrong.  I imagined that they might enjoy it a little bit, but they would quickly become irritated with the fancy clothes, the adult conversations, and the late nights with no real "kid" entertainment.  

I WAS MISTAKEN!!!

This is how they saw it:  PARTY, PARTY, PAR-TAAAAAAY!

Each one had a favorite moment or two that stands out.  

Reeves couldn't have been more proud to be wearing a tie (see previous post), and to be hanging with the "boys".  My very cool and handsome male cousins made him feel just like one of the guys.  It made his LIFE.  Not to mention the fascination he had with the open bar (please get your minds out of the gutter!).  He was amazed that he didn't have to pay for it, and enjoyed drinking his weight in orange juice and sprite. 

If you know my Lucy, you know that (like her Daddy), she has a sugar addiction.  It is serious, and requires constant monitoring when we are at home.    So it probably goes without saying, but Lucy was all about the CAKE!  Actually, all of the little girls were obsessed with the cake.  I averted a major disaster when I stopped Caroline (my niece, the flower girl) from LICKING the groom's cake.  That was a close one.    

That reminds me of another funny Caroline story.  As I mentioned (and as you can see in the picture), all of the little girls were dying for the cake to be cut.  Lee (my cousin, the groom) told us that at some point, Caroline found him and told him that he "had to come quick, it was time to cut the cake!!!"  Lee promptly followed her to the cake and expected to find his bride, Meredith, and a large crowd awaiting.  

What he found instead were four little girls....no Meredith, no crowd.

Lee said, "Caroline, why did you bring me here now....where is everyone?"

"I don't know, but we want some cake.... you have to cut it for us!"  

They had to wait a little longer, but they finally got their cake.  I can tell you, it was well worth the wait.  I think Lucy ate about 4 pieces!

Then there was the dancing!  I mean, what is better than a big band and a twirly dress.  Look at the smiles on their faces.....PURE BLISS!  

I don't think it could have been any better!

As for Sweet Greer,  she slept through it all...

A Lesson in Patience: Day 4!!

Day 4 (total time N/A.....again!!!)

Today was a "Daddy Day" because I worked (I like to call it a paid vacation!).  Chris wore the kids OUT today, and Reeves fell asleep on the couch again.  I realize this is a bad habit, too!  I hope that this is not setting us back more and more.  Oh, well...it's the last week of Summer (sniffle)!