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

Moving

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

Baby Burrito

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

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

Monday, October 4, 2010

Feeding J

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

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 :)

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

Saturday, October 2, 2010

Jack can...

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

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. 

 

 

Stinkerbell

Ready to leave to show off Stinkerbell, I mean
Tinkerbell.

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.

 

Memory Monday (Diagnoses Defined) 10/1/10 - 9

Diagnoses Defined

I thought it would be good idea to put a description with all of Jack's diagnoses.  I copied a small definition from Wikipedia and put the link after if anyone wants to read more into it.  Gotta love Wikipedia!!! 

Cerebral Palsy (CP) -  umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.  http://en.wikipedia.org/wiki/Cerebral_palsy

Cortical Visual Impairment (CVI) - a form of visual impairment that is caused by a brain problem rather than an eye problem.  Most people with CVI are not totally blind. http://en.wikipedia.org/wiki/Cortical_visual_impairment

Dysphagia - medical term for the symptom of difficulty in swallowing.  http://en.wikipedia.org/wiki/Dysphagia

Gastrostomy tube (G-tube) - a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing.  http://en.wikipedia.org/wiki/Gastrostomy_tube

Hypoxic Ischemic Encephalopathy (HIE) - occurs when the fetus is deprived of an adequate supply of oxygen.  http://en.wikipedia.org/wiki/Hypoxic_Ischaemic_Encephalopathy

Infantile Spasms (IS) (West Syndrome) - an uncommon to rare epileptic disorder in infants. http://en.wikipedia.org/wiki/Infantile_spasms

Laryngomalacia - a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. http://en.wikipedia.org/wiki/Laryngomalacia

Microcephaly - a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. http://en.wikipedia.org/wiki/Microcephaly

Posted by Tracy at 3:27 PM 0 comments

Labels: Cerebral Palsy, History, Infantile Spasms

Memory Monday (First Keto Snack) 10/1/10 - 8

Friday, October 1, 2010

First Keto Snack!

It was only a small amount of apples and butter but he got it all down.  With the exception to any that got too much saliva with it, he would spit that back out at me.  I know why he makes that face, I tried them and they are bitter.  He's pretty happy now and relaxing in his chair. 

Posted by Tracy at 2:53 PM 2 comments

Labels: Feeding, Ketogenic

Busy

So I took a break.  A break from facebook, blogging even instagram.  I didn't really do it on purpose but I think I needed it.  I've also been pretty busy.  

Of course I've been chasing Sarah around everywhere.  She's climbing on everything.  She pushed a chair up to the counter and got in the kitchen drawer.  Oh boy to I have a curious little girl.  She had her 15 month check up earlier this month.  All went well.  She's on the petite side but the doctor said as long as she gains weight then she will be fine.  She walked up the stairs at the pediatricians office about 10 times and would have kept doing it if we hadn't left. 

Such a stink!

So independent

Her doctor is the same one that Jack saw.  When she first came in she acted like she recognized me but thought it was because of Sarah.  A little later she asked if I had other children and I reminded her of Jack and then she remembered everything.  We talked a little about what happened, she said she had been thinking about us and wondered if she would ever get to see me again.  It was difficult going back to her but also I felt comfort in knowing that we were on her mind.

I've started working again.  It feels good to get out there but I missed that little girl.  I had to get big hugs before I left. 

She gives the BEST hugs!



Since I'm working in Lexington I got to visit Jack's tree and the cemetery.  It was gorgeous both days. 

In front of Jack's tree at the Arboretum

Exploring

My babies

I love the fall colors in the background

I saw a grief counselor for the first time.  I really feel like she will help me work through all of my thoughts and emotions.  I've had such a good experience with social workers in the past and I know that talking through things will really help me.