Tuesday, May 1, 2012

Boppy's, Burps, and Bucket Lists

Josiah had EI on Monday morning.  He loves his time with K.  His stamina seems to be increasing.  He really enjoyed tummy time, lifting his head & turning it side-to-side like a pro.  Sometimes, he uses the boppy pillow; sometimes he lays flat on his tummy.  He does well either way.  We experimented with a new 'gym-type' toy - it was a smashing success!  It has a mirror & folds down for use during tummy time.  Josiah enjoyed looking at that cute baby in the mirror :). 

James was up, and quietly watched K work with Josiah.  I think James wanted to to play but knew it wasn't his turn.  K will be back on Thursday for James.  This week's two playgroups will help pass the time.

Josiah continues to eat his rice cereal once daily.  He seems to enjoy it, most of the time.  I'm working on using different spoons so he'll get use to different textures.  I still imagine his high palette is going to act as an obstacle, at times.  I'm researching this a bit to see what kind of information I can find on feeding, high palette, etc.  It's a work in progress.

Jesse finally felt better & was back to school first thing Monday morning.  He shows no signs of the illness that kept him home last week.  Luckily, no-one else in the house was stricken with the illness.

Today, Jesse's friend came over & we all enjoyed playgroup.  It rained, and was cloudy, all day.  Somehow, that made me feel very tired all day.  The weather doesn't show any real signs of improving for the next several days.  I'm looking forward to sunshine :)

Every day, at various times, I find myself surfing the net.  I recently came across links to a baby who's parents had started a bucket list for her.  After a few clicks, I learned that the little girl's name is Avery & she is 5 months old.  Avery has SMA - Spinal Muscular Atrophy.  The MD's said she won't live beyond her 2nd birthday.  With SMA, eventually, all control over arms is lost.  Second, all control over legs are lost.  Third, all control over breathing is lost.  It's a rare disease and very little is known about it.

Rather than cry now, while she is alive, her parents decided they would cry later - after she is gone.  They decided to create a bucket list for Avery & fill her remaining days with LIFE :)  Avery's Dad started a great blog in which they show Avery fulfilling her life with great adventures <3.

I think back to when we learned that Josiah had a chromosomal abnormality - we didn't yet know which one - there were many it could be.  Trisomy 18 was one possibility.  I read a little bit about it.  I was scared to death.  The 'normal' lifespan for a child with Trisomy 18 is 4-14 days.  Many children with triple 18, never come home from the hospital.  I remember one day praying, "Please Dear God, don't let it be that!"  When we received the final diagnosis of Trisomy 21, I was so very relieved.  I remain relieved.  I am thankful for a beautiful baby that will grow into adulthood.  I am thankful for God's grace. 

Tonight, I pray for Avery's parents.  They can finally stop to cry.

RIP Avery Lynn Canahauti 11/11/11 - 4/30/12 <3

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