Monday, November 26, 2012


Yesterday I started packing up Jack's room for our big move.  It's not a long distance but every move is big when the military is involved.  The packers will pack all of our things but I didn't want them to pack Jack's clothes and some of his things.
All of his clothes
 I folded up all of his shirts in the closet and placed his shorts on top in the bin.  One day I will make a quilt for our bed but it's not the time.  I can't imagine cutting his clothes up now.  I neatly folded his sheets.  The sheets that he slept on the last night he was in this house.  They even had a few spots of spit up on them.  I cherish those little spots.
Sheets, blankets, pillows and towel
I took all of his supplies out of his bins and placed them in one big bin.  I plan on giving some of his therapy things away and maybe even his equipment.  But for now it will hang out in our garage. 
I won't lie it was very difficult to pack his things up.  Since he passed his room hasn't been touched.  I did go in there quite often but everything was still in it's place.  We had to keep the door closed so Sarah wouldn't go in there and mess anything up. 
Empty bins and hangers :(
John is going to take his bed, wheelchair and clothes in his truck and we will let the packers and movers take care of everything else. 
Just a mattress
As I said before we are moving.  We aren't going far...just two hours east, where I grew up.  John applied for a compassion relocation.  The military allows this sort of move when a family member passes.  This way we are closer to family and of course Jack.  It all happens this week.  I better get moving and packing what the movers won't take. 

Memory Monday (Baby Burito) 10/8/10 - 12

Friday, October 8, 2010

Today Jack started occupational therapy.  This was the result.  It will be one of his exercises for movement.  He didn't cry the entire evaluation and really enjoyed being a burrito.  The OT, Kimmy, made a list of things for him (me) to do everyday.  His list is massage, movement, floor time, sensory and ending with something that he enjoys.  Each category includes different things to do.  One day he could get a massage with oil, get rolled into a burrito, weight bear on hand and knees, put hands in a bowl of beads and end with cuddling and rocking.  She wants him to do this in the same order everyday.  This way he knows what to expect and when he's finished.  I am also going to incorporate PT, speech and vision into the plan. 
 We also went to the mall this evening with Julie.  Jack decided that he didn't want to ride in his wheelchair but wanted to be carried.  This is no easy task with him being 28 pounds!  He usually gets what he wants so Julie and I took turns carrying him.  Thank you so much Julie!  This is why I don't take him out by myself.  I can't carry him and push his wheelchair. 
 When feeding J, I've learned that he has good days and bad days.  Today was a bad day.  He wouldn't open his mouth and what I did get in he would just cough back out.  Yesterday, he did really well.  He ate pears with butter and cinnamon in the morning and squash and butter for dinner. 

So I'll offer it again tomorrow.  Hopefully, it's a good day. 

Posted by Tracy at 9:35 PM 5 comments

Labels: Feeding, OT

Monday, November 19, 2012

Memory Monday (Feeding J) 10/4/10 - 11

Monday, October 4, 2010

After 8 feedings I have learned that Jack doesn't like the lemon pudding.  He tolerates the apples and butter and enjoys green beans with cream and butter.  He's doing really well with taking food by mouth but after 20 minutes he tires and slows down.  He gets under an ounce each time because fat is so dense. 

The dietitian emailed me some new recipes tonight.  So this week he will get pears and garden veggies too.  Hope he likes them!
Not apples again!

Posted by Tracy at 7:42 PM 4 comments

Labels: Feeding

Tuesday, November 6, 2012

A Series of Photos

Most of you know that this is the picture that we used for Jack's obituary.  But I wanted to show the entire series of these pictures.  This was his first time at PT and OT in KY.  He looked too cute to not snap some pics.
This is actually the last picture of the series.
Mom, I don't want to take pictures!

Just waiting.
Acting like he's sleeping
BIG YAWN!  I love those yawns.
And there it is.  The perfect picture that I have
in four places in my house :)

Monday, November 5, 2012

Memory Monday (Jack can...) 10/2/10 - 10

Saturday, October 2, 2010

I feel like I am always telling doctors, therapists or case managers what Jack can't do.  The appointments end and I feel drained.  So this post is about what Jack likes to do and can do...

Jack likes the Isty Bitsy Spider
                his purple tomato chair
                to cuddle
                to play with his toy bar
                his disco ball
                his mobile/projector
                to take naps with Daddy
                to sleep in Mommy and Daddy's bed
                his black box
                his head rubbed
                to swing
                when Bailey and Gavin talk to him
                to meet new people
                his legs massaged
                to touch clothes in stores
                to swim
                to go on short walks
                to touch things with his feet
Jack can be so sweet at 4 AM
               make funny faces when I brush his teeth
               let me know when I'm being too loud
               push up with his arms when his nose is rubbed
               hold my hand
               bat at his toys
               watch Baby Einstein movies
               push my hand away when he doesn't like something
               say ah-boo, ah-goo, ah-moo and muh
               let me know when he wants to be held
               eat small bites of food
               make me smile  :-)

Posted by Tracy at 8:14 PM 3 comments

Labels: Happy

Sunday, November 4, 2012

In my Dreams

On July 12, 2012 this is what I dreamt:
I was in high school and needed to get books out of my locker for my next class.  I couldn't find my locker and walked around for a while looking for it.  Then I saw Charlie Lincoln standing at his locker.  His was number 1 and mine was number 2.  We spoke for a minute standing by our lockers.  I got books out of my backpack put them in the locker and got the books that I needed out.  The books that I pulled from my backpack were large and very heavy and the ones that I needed were light and thin.  End of dream.
The next day John and I were in the car and I was telling him about my dream about being back in high school.  I thought it was weird that I had that dream but it seemed like no big deal.  Then it hit me...Charlie Lincoln passed away before my ten year high school reunion in 2007.  I did a little research and discovered that he died in 2004 at 25.
I haven't talked about Charlie since the reunion when I found out that he passed away.  It seemed so strange that I would dream about him.  At that time I had not dreamt about Jack but this dream stuck in my head and still think about it often. 
Was Charlie helping with Jack and he was telling me that everything was OK?  After I thought about it there were many things that seemed important.  Charlie helped me find my locker.  The books that I put up were heavy and the ones that I needed were light.  I still don't understand the locker numbers but it seems to me that it was significant because I remember them so clearly.  Charlie died in 2004 at 25 and Jack's birthday is 4/25. 
Since then I've had many dreams about Jack.  Some strange and some so comforting but none that stuck with me like this one. 

Friday, November 2, 2012


Ready to leave to show off Stinkerbell, I mean
At Granny's
Playing with a bell.
Granny putting Sarah's shoe back on.
That was our Halloween.  It was a little too cold for us to go trick or treating but Sarah had fun just hanging with Granny.  She even got lots of fruit snacks out of Granny's candy bag :-)

November 1

It came and went without a blog.  Why would I blog on this day?  Well, for one it had been 4 months since I lost my sweet little boy and two it was the beginning of Epilepsy Awareness month. 
It almost hurts to see my friends on Facebook post about the start of the month.  That I don't have my little warrior here.  He may have had cerebral palsy but his epilepsy was the one thing that we battled everyday.  The worst seizures to have, Infantile Spasms then Lennox Gastaut Syndrome.  During the last year his seizures changed.  He was having fewer but they were so much worse, classified as tonic seizures.  His body would stiffen, his arms would cross in front and he would cry out like it hurt.  It was horrible to watch but I assume that it was even more horrible to experience.  But he recovered so quickly, like the strong little man that he was.  So brave.  I HATED watching him go through those.  He had started a new medicine in January 2012 and it helped so much.  Even with it, his seizures were still so bad.  Who knows what they would have been like if he wasn't on three anti-seizure meds. 
On the four month anniversary, Sarah and I did go visit Jack.  We were on our way back from Lexington, it was a little cold but the sun was shinning. 
She did really good this and didn't run off.
She was standing at the headstone beside Jack's saying Jack.  I
told her this one is Jack so she came over and did the same thing
to his.
Stealing his flowers.