Tuesday, September 18

First Cold + October 26 Importance

It happened.  Will has his first cold.  His big sister started preschool two weeks ago and it looks like she has already landed her first bug.  I'm not saying preschool is for sure where she picked it up, but I am guessing it's a likely candidate.  Anyway, the moment I have been dreading is here.  Will has a runny nose and is congested.  We tried laying him down to sleep tonight after steaming him in the shower, elevating his crib, suctioning his nose with saline, blah, blah, blah, but he just can't do it.  He's too congested to lay down, so right now he's laying on my chest snoozing as best as he can.

Please say a prayer for both of my kids that they're back to feeling better soon.  Please especially pray that Will's lungs are protected and that he gets over this quickly without issue.  I'm positively mortified at the moment, but his lungs sound clear and he is generally in good spirits.  I just pray that he does okay and kicks this cold soon.

I also got an update from the genetics team at Duke yesterday.  They expect Will's whole genome test results to be ready on or before October 26.  I emailed them back and asked if there was any chance they could expedite his results because his care is so dependent on what they determine to be his actual condition (Jeuene's Syndrome or ????).  We know we would like for him to get shots to protect against RSV and they need to start soon, but we can't get insurance approval until we have a diagnosis.  So....we continue to wait.  And wait.

The feeling of panic is starting to creep back in.  I understand that the train is on the track, but it's getting closer and closer to me.  The information we have been waiting on for over four months is coming to us soon.... we are going to hopefully know for sure what Will's "condition" is.  Maybe then, we can better prepare for how best to take care of him.  I just hope I'm emotionally ready for the answer.

As for his cold, I can't help but feel neglectful.  Like I haven't done enough to protect him.  Like I've been too "normal" by taking him out to public places...  It is just so hard to find the balance between protecting him and letting him experience life.  Ugh.  Sometimes I feel like we are guilty of just accepting Will as a miracle and going about our business as if everything is "normal", but is it?!?  Can we treat him normally or do we always have to live in fear?

Sunday, September 9

The Power of Prayer

We went up to visit my Mom in Virginia a couple weeks ago and while I was there I was looking for some bedtime reading material and stumbled across the book 90 Minutes in Heaven by Don Piper.  I wasn't really sure what to expect when I opened it up but the words on the cover, "a true story of death and life", sounded right up my alley.

It is a very easy read and it is quite captivating from the beginning.  Without giving away any of the big highlights, it can be easily summed up as the true story of a minister that died in a horrible car accident.  He went to heaven and writes about his experience there.  While he was in heaven, a fellow minister happened upon the car accident and felt the need to pray for the dead guy.  His prayer worked and the dead guy started singing.  Intrigued yet?  :)

The story is fast paced and correlates some great bible verses with each part of this miracle journey.  As I read the book, I couldn't help but think of how it loosely parallels with our pregnancy journey with Will.  Sometimes it seemed that there just wasn't anything anyone could do to make all of the "problems" go away.  They thought he had fractures in utero...they thought his chest size was incompatible with life...they thought my bleeding issues may tear away the placenta....  The odds seemed so stacked against us.  BUT, prayer intervened.  We were fortunate enough to have prayer warriors across the globe praying for Will.  Asking for a miracle.  Praying so, so hard for us.  And guess what?  It worked.

This verse from the book summed it up perfectly and I found myself just reading it over and over again last week...

And we can be confident that he will listen to us whenever we ask him for anything in line with his will.  And if we know he is listening when we make our requests, we can be sure that he will give us what we ask for.  I John 5:14-15

Wow.  I prayed so, so, so many times that God's will be done for our sweet boy.  I knew what my heart desired, but I also knew that God already had a plan for Will.  If that plan was for us to bring him home, then so be it.  But if God's will was to take him to heaven, then we would find a way to make peace with it.  It's just so amazing when I think back on all of the medical conversations about Will and how pessimistic all of the doctors were...  In the end, none of it mattered.  Why?  Because prayer works.  We asked that His will be done...we asked for a miracle...and here he is.  Praise God.


This week has been packed full with loads of thought about old memories and the importance of making new ones...

As for old memories....

My Dad's birthday was Thursday.  He would have been 78 years old.  I miss him every single day and I would love for him to have had a chance to get to know the adult me...the mom...the wife...the more mature daughter I could have been.  Even though our lives together here were cut short, I look forward to the day when we're able to see each other again.

Exactly a year ago yesterday, our pregnancy roller coaster ride with Will began.  I was still very early on in the pregnancy, but we were absolutely certain I was beginning to miscarry.  Over the course of several days and doctors visits to measure my hCG levels, we were shocked to learn that I was still pregnant and the baby was growing.  We had no idea what the future held in terms of potentially losing our precious baby.  It's crazy to think that in some ways we're still on the pregnancy roller coaster ride.  We thought for sure that when Will was born all of our questions about his "problem" or diagnosis would be known.  Yet, I sit here tonight four months after his birth still waiting on whole genome test results to tell us if there really is anything "wrong" with Will.  I won't even get started on my feelings about this...much too complicated.

As for new memories....

Emme started preschool last week.  She will be going two days per week and so far she's loving every minute of it.  She's always very excited to show me her art project for the day.  The teachers also say she's doing well and they have expressed that she is a very independent little girl.  Ohhh yeah, she's independent alright.  :)  Let's just hope her independence doesn't eventually transition into being too hard headed to listen.  Gosh, I just love her... and I totally understand her independence.  I wouldn't want someone else helping me bubble paint either!  ;)

Will is amazing.  He's perfect.  He's my little miracle.  He is really starting to smile and laugh lots these days.  I have my routine set of "jokes" that I can perform to get him to giggle almost every time.  Emme and Will are also really starting to interact more.  She has been holding him frequently and his eyes follow her every moment.  It's absolutely adorable and melts my heart to see the two of them together.

Emme and Will riding my dad's old golf cart

Will has also started spending time in his exersaucer and he loves playing with all of the toys.  It's so fun to see him exploring the world around him.  I also did something I swore I wasn't going to do until he was a bit older, but I gave him a tiny amount of cereal the other night mixed with milk.  It took him a minute to figure it out, but once he realized it was mainly milk he just kept opening up his little mouth for more!  I figure it will be a good way to start getting him some extra calories.  Next up?  Pie.  :)

Will's first solid food!

He also just had his four month pediatrician visit.   He weighs about 13.5 pounds (20th percentile), he's 25.5 inches long (69th percentile) and his head is finally measuring a bit more proportionately in the 37th percentile.  So, he's growing well but he could stand to add a little more weight (hence the pie!).  The pediatrician didn't have any concerns whatsoever and we're slowly going to start trying to wean him off his acid reflux medicine.  Of course, everyone is still waiting on the genetic test results, but the doctor keeps trying to tell me to just relax and stop being so paranoid.  It's just soooo hard to relax and not look for things to be "wrong" when I've had it drilled in my head for a year now that things just weren't normal.

This weekend was also my hubby's birthday.  We celebrated by surprising him with an overnight camping trip.  I packed up all of our things secretly last week and arranged to have everything waiting for us at the campground with his brother.  We almost pulled off the surprise, but Carlton started getting suspicious before we got there since he couldn't find any of his normal stuff he would have taken if we were just going to the lake for an afternoon.  Anyway, he was still THRILLED to have our first overnight camping trip.  It went well-ish.  ;)  Lots of memories, not a lot of sleep.

So, here's to making new memories and remembering the old ones and how incredibly important it is to just stop...relax...and let life happen.  Isn't it grand?  I think so...I really, really think so.