My Story

Wiliam was diagnosed with JMML in Nov. 2005, he got his bone marrow transplant on March 29, 2007.

 

Will's video

http://www.onetruemedia.com/shared?p=324d71af5b9e284f6855a7&skin_id=701&utm_source=otm&utm_medium=text_url

 

 

 

 

Journal

Monday, June 8, 2009 1:19 PM, CDT


4 years old.  Yesterday William turned 4 years old.  I can still so vividly remember the day he was born, it's crazy.  I had been on bedrest for over a week and was hating the hospital so much I actually begged my OB to take him earlier just so I could get home.  At 37 weeks he weighed 6 lbs, 12oz and was 19 inches long. 

I think I spent a total of 9 days in the hospital...I laugh at that now.  Those first few weeks there were clues of what was to come.  He was a great baby the first week, he ate well, slept ok, was alert.  The third week he started to cry and cry non stop.  We weren't able to soothe him either, it was usually at night because I remember going to sleep in his room, in the guest bed we had in there so Russ could get some sleep so he could function at work.  I remember asking Russ if it was possible for a baby so young to have colic, he was so cranky.  But he was eating, he was growing, he was so cute. 

By 3 weeks he also got his first 'spots', what we thought were bug bites.  I felt like the worst mother, we had spent a little time outside with our neighbors and in Louisiana in June, it's impossible to avoid the bugs.  Then the spots spread to cover his entire face and any exposed skin.  Allergies?  Bugs in my house?  Fleas?  I was feeling worse than ever because our cats did sleep in his room, that was their room before he was born.  They didn't sleep in his crib that I knew of, but it's possible they were in there. 

We went to his doctor several times, who told us he had anything from infected baby acne to scabies and finally we saw a dermatologist who cut 2 of Will's spots off his legs.  He was just 6 weeks old.  My heart broke seeing them do that, but I knew we needed to know what was wrong with him.  I thought that was the worst that would happen to him, those silly little spots being punch holed out of his leg.  Little did I know that just a week later I'd be watching him get a spinal tap, a catheter and being told that we were be in patient indefinitely until we figured out what was going on.

He was such a big boy too, at 2 months he already weighed over 11 lbs!  Almost doubled his birth weight by then.  It's so crazy to think that at 18 months, he weighed only 2 lbs more than that.  My poor boy.  My heart breaks when I think of all he went through, all we missed out on.  Having that perfect baby, without health problems.  Not having to worry if he would live or not....

And then I look at him now, 4 yrs later.  4 years!!!  I never, ever thought we'd see him turn 2, so 4 years is just crazy to me.  What's even crazier is how healthy he is.  So completely and totally healthy.  Looking at him now, no one would ever guess how far he's come.  From that skinny little baby with spots all over him, who was sleeping 18-20 hours a day, vomiting 10x a day, not able to eat much by mouth, not able to do anything but sit and only if we sat him up to now.  Now he's running.  Now he's fishing.  Now he's riding a bike.  Now he's playing tball.  Now he's writing his name, he counting to 100, he's reading basic words.  Now he can run to daddy when he comes home to give him huge hugs.  He can get dressed by himself.  He's alive, he's here and we couldn't be more fortunate.

Please, keep in your thoughts several other JMML kiddos who are going through some rough times.  It drives home how lucky we were to be in the right place with the right doctors.  Lucky for Will who is just so perfect now I could squeeze him forever.  Lucky for him I plan on doing just that!  Thanks to our great doctors who helped give us back our perfect son.

Anyway, Will's bday!  He picked going to a lake to go fishing for his bday.  We went to Medina Lake, which is about an hour away from us.  It was actually a ton of fun.  The area we were in got crowded pretty quickly, lots of people enjoying a hot sunny day.  Will caught a fish the first time he threw his line out, a little 2" bass, but he was happy.  And he was done fishing, he wanted to play in the water.  So the kids spent the day swimming, they had a ton of fun.  I got another sunburn, you'd think I'd learn after the 2nd degree burn I got from Sea World. 

After the lake, we went to Sonic for ice cream then home for presents and cake.  Will had a good day I think, Jake was too impressed.  He didn't get the presents were for Will and had a major meltdown before Will went over to give him hugs.  Sweet brother.

Next is Russ' bday on Sat, then we're going to a Missions game (minor league baseball) on Sun, then Jake's bday is on the 23rd.  He'll be 3!  We're going mini golfing for his bday.  After that, we're heading to Louisiana for the 4th for a week if Russ can get time off, then we're heading to Schilitterbahn (a HUGE water park nearby) for Em's bday on July 25th.    Busy summer, it's so great to get out with the kids, to do normal family things.  Can't ask for more than that!

Love to all, Sarah

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E-MAIL AUTHOR

sarahbean@satx.rr.com

HOSPITAL INFORMATION

Wilford Hall/Methodist Childrens Hospital Texas
San Antonio, TX 78245