Memory Monday (I'm nervous) 10/27/10 - 17

Wednesday, October 27, 2010

I'm nervous

Tomorrow the nurse comes to help with Jack.  It's orientation for her and a test for me.  I've done this for 18 months without her and it will be hard to let someone else help.  I'm so used to doing it all. 

Yesterday the supervisor came to set up the time and informed me of what the nurse can do.  Here's what I can remember:

Wash his clothes

Clean out his feeding bag

Wash his dishes

Clean his room

Do therapy with him

Put him in his stander

Take him for a walk

Go to appointments with us

Watch him while I run errands

Go with us while I run errands

So tomorrow she will be here from 12:00 to 4:00.  I guess I  will just have to wait and see how this will turn out.  I'll take a deep breath and let her do a few things.  A little at a time.  Maybe then I'll be more comfortable with help.

Posted by Tracy at 6:34 PM 3 comments

Labels: Nurse

Memory Monday (18 Months!) 10/24/10 - 16

Sunday, October 24, 2010

18 Months!

I can't believe that tomorrow Jack will be 18 months old.  It seems like just yesterday that he was still in the NICU and I was trying to wrap my head around all of this. That my son had brain damage.  That he could have cerebral palsy.  That he might suffer from epilepsy.  That he didn't take his first breath for 6 minutes.  That he would need a G tube to survive.  All things a new mother doesn't want to hear.

Over the past year and a half I have grown as a person and a mother.  Jackson has taught me to take things slow.  He will do things on his own time.  It took me a long time to realize this.  I wanted him to be normal and to prove all the doctors wrong.  I have come to accept that he's just Jackson.  And the best that he can be!  I love that little man with all my heart and every little accomplishment makes me giddy inside.  Happy 18 months Little Man!!!!

Posted by Tracy at 9:09 PM 6 comments

Labels: Happy, NICU

Memory Monday (Brighton's Fall Festival) 10/23/10 - 15

Saturday, October 23, 2010

Brighton's Fall Festival

We went to Brighton's Fall Festival today.  We got there a little late so we missed the festivities but we got some good pictures of his costume.  This was one of three Halloween events that we plan to attend. 

Posted by Tracy at 5:15 PM 2 comments

Memory Monday (Our stay in the nursing home) 10/22/10 - 14

Friday, October 22, 2010

Our stay in the nursing home

18 hours was too long to spend in a nursing home.  We arrived yesterday at 2:30 to complete paperwork and be shown our room.  It was small and old but it's not like we got to choose it.  

As we were leaving for dinner we passed a few residents and nurses.  They all watched as we walked out  and a few commented on how cute and sweet Jack was. 

Last night was hard to get through.  Not only did we have to sleep on uncomfotable beds, Jack decided that he didn't want to sleep.  John said he heard me bargaining with J a few times about sleep.  It didn't work.  As soon as I would put him down he would start crying.  Between the train going by, the man snoring next door and a plastic pillow I'm suprised that I got any sleep. 
At 5:30 this morning there was a knock on the door to see if we wanted breakfast.  Why can't they ask that the night before?  Then the train came by again!  We got up and got out of there.  I would do it again if I had to but I'm so glad that it's over! 
So now that we got through that we can move on and start getting benefits from MDCP (Medically Dependent Childrens Program).  A nurse from the nursing agency will be at the house on Tuesday to discuss Jack's needs and when the nurse will be here.

Posted by Tracy at 8:24 PM 3 comments

Memory Monday (Sea of Purple) 10/15/10 - 13

Friday, October 15, 2010

Sea of Purple

Today I made a post on Facebook that I never thought I would.  I asked people to let me tag them in my photo of Jack's ribbon.  The ribbon is for Infantile Spasms Awareness Week.  So many people responded and made it their profile picture.  I truly appreciate all of the support. 
I had reservations about this because I feared that people would ask questions and look at Jack differently.  But this is what we both needed.  I am his advocate.  I am the person that can help people understand everything about him.
Infantile Spasms is a rare form of epilepsy during infancy that presents with developmental regression and hypsarrythmia (chaotic brain waves).  The prognosis is usually poor resulting in moderate to severe mental retardation.

Thank you to my fellow IS moms: Stacy for the ribbon and Karen for the idea of the post!!

Posted by Tracy at 1:00 PM 2 comments

Labels: Infantile Spasms