Monday, September 24, 2012

Memory Monday (Park) 9/30/10 - 5


So last night I actually got some good sleep.  Granted, Jack slept in his Tomato Seat and I slept on the couch but he didn't wake up!!  This morning I talked to Nicole for an hour, catching up on the kiddos.
At the park

As I was giving Jack his morning meds Amanda text and said that she wanted to take the boys for a walk so I got out of my pajamas and headed out with Jack, Rusty and Abby.  We went to the park for little while then came back to my house to cool off.  Can't wait to do it again! 

Owen, Ethan and Jack

Ethan chillin' in the recliner

Posted by Tracy at 8:47 PM 2 comments

Saturday, September 22, 2012

Jack and Ethan

When I post the Memory Monday post I immediately start working on the following weeks post.  Well, next weeks post is very sad for me.  Not only is it about Jack but about his sweet little friend Ethan. 
I met Amanda (Ethan's Mom) through Jack's vision teacher.  We were immediate friends and loved talking about our boys.  Here's a little history on Ethan.  Amanda was pregnant with twins.  During the pregnancy, Seth passed away which put a lot of stress on Ethan's body and he had a stroke in utero.  After that his brain did not develop and he was diagnosed with hydranencephaly.  The doctors did not expect Ethan to live and if he did it wouldn't be for long. But Ethan didn't know this and did so much that the doctors didn't think possible.  Although Jack and Ethan had different diagnoses they were very similar in their mannerisms and what they could do.  Unfortunately, Ethan and Jack now have one more thing in common.  They are both angels.  Ethan passed away last year on July 21.  My heart hurt for Amanda and Tim when they lost Ethan but I really had no idea what they were going through. 

Ethan Wayne Thrasher 6/11/08-7/21/11 ~~ Jackson Thomas Sexton 4/25/09-7/1/12

Amanda is also a blogger, please check out her blog Perseverance.  While having a rough moment a while back, I logged in to Amanda's blog to read about her past year and to see how she got through it.  She is one of the reasons that I got back into blogging.  I saw that it helped her and hoped that it would help me. 

Friday, September 21, 2012

The Sweetest Donation

I don't usually post twice in one day but when I got the mail today there was a letter in there that needed to be seen. 

As I read it, tears filled up my eyes.  What a suprise for this sweet little girl to ask for donations for Jack's plaque.  Jen you have a wonderful little girl!  THANK YOU Reagan for doing this for Jack and Happy 7th Birthday!
I sent the check in this week for the plaque.  When I spoke to Marsha at the Arboretum she said that it usually takes 2 months to get everything complete.  I will make plans either when the plaque is set or in the spring for the get together at the Arboretum in honor of Jack.  I can't thank everyone enough for the wonderful support and donations.  It was a complete success! 

Visiting Jack

Yesterday Sarah and I took a trip to Nicholasville to visit Jack.  It was a beautiful day and I wanted to take Jack his butterfly that Alli from Butterflies for Courageous Kids made for him.  Here are the pictures from the trip.

Wednesday, September 19, 2012

Another Accomplishment

Last week while at Old Navy looking at fall clothes for Sarah, a lady came up to me and asked me to get some pants down for her granddaughter.  I did and she looked at Sarah sleeping in her stroller and asked how old she was.  I told her 14 months and she said that her granddaughter was two.  Then there it was...the question.  Do you have any other children?  My heart started racing and I got dizzy.  I didn't think one little question would do that do me.  My answer, yes I have a son that past away two months ago and two step sons. 
She said that she was sorry to hear that and asked how old he was.  When I said three, she then proceeded to tell me about another three year old that suffocated in a bean bag in Louisville.  I wasn't really listening because my head was still spinning from answering her question.  She thanked me and we went our separate ways.
As I walked away from her I could hear my heartbeat and my hands were sweating.  But I did it, I answered her question honestly and didn't start crying.  Another accomplishment for me.

Tuesday, September 18, 2012

Special Mail

Yesterday I received two special gifts.  One was a necklace that I haven't stop wearing since I got it (except to sleep) and the other two little butterflies from Butterflies for Courageous Kids.  I will explain them both.
First, the necklace.  One of my dear friends, Holly, designs jewelry and recently launched her jewelry website.  When I told her that I wanted to order something just not sure what, she told me that she was working on a necklace called Angels Among Us.  Then asked if I wanted to help her design it and include Jack's story on her website.  What a neat memorial for Jack.  So we worked together and finally got it just right.  At least I think so.  I love the angel wing and his birthstone.  It really makes the necklace.  Please check out Holly's website, Sophie's Style and her Facebook page.  There is some amazing jewelry on there. 
Next, the butterflies.  I was on Facebook one evening and saw that a couple of my friends had liked this page and had received butterflies.  I went to check it out.  It's a very neat cause and an awesome young lady named Alli.  I will let you go to her Butterflies for Courageous Kids Facebook page to read more about it. 
I thought about immediately asking for a butterfly for Jack but stopped.  I just couldn't bring myself to do it.  A month passed and I was looking at the new butterflies she posted and saw one that had "Sarah" on it.  Just because of my Sarah I looked at it.  I saw my babies on there.  Wait, what?  Someone requested one for her.  Oh my.  I commented on the picture and said that I thought about requesting one for Jack.  Alli told me that she wanted it to be a surprise but she was working on a special one for him.  I teared up.  How awesome! 
The best we could get before she tried to eat it.

I can't wait to take Jack his.  I will be sure to post pictures when I do.  I still do not know who requested them but THANK YOU!  It really means a lot to me. 

Monday, September 17, 2012

Memory Monday (Jack's Black Box) 9/29/10 - 4

Wednesday, September 29, 2010

We just started putting him in it again and I am so glad that we did.  As soon as the lights go on he turns his head and looks right at them.  His arms didn't stop moving the entire time he was in there.  Hopefully, this will wear him out and he will be able to sleep through the night.  I'm hoping...

Posted by Tracy at 7:52 PM 2 comments

Tuesday, September 11, 2012

Mom of Four

Last week we had a TV repair man in our house.  Sarah was being her silly, cute self.  So he started talking about his two month old little girl.  He even showed me a picture of her.  Cutie!
Then he asked.  The question that I dread coming up.  Do you have any other children?  I said yes.  Luckily he didn't ask any other questions after.  I'm not sure how to explain that to a complete stranger.  Of course she has three older brothers.  But do I want to go into the details with someone I just met?  Do they want to hear about it? 
While shopping, well meaning strangers will come up and start talking to Sarah.  Then they ask, does she have any siblings.  Yes, three brothers.  Then I wait, will they ask anymore questions?  The usually reply is,  oh, I bet they look out for her.  More than you know.
I will always be a mom of four, one baby just happens to have his angel wings. 


Monday, September 10, 2012

Memory Monday (It's been a long week) 9/29/10 - 3

It started Saturday night when Jackson was up all night!  I stayed up with him until 5 AM then John got up around 6 AM with him.  He would cry when he was in his bed or laying down then as soon as we would pick him up it would stop and he would fall asleep.  I know he was exhausted but just wanted to be held.  So Sunday he had 22 seizures.  A lot for him since starting the keto diet.  I think it was from being so tired.  I know I felt funky myself from the lack of sleep so I know he did too.

Monday we had 4 appointments.  MDCP, vision, PT, social work.  The ladies from MDCP (medically dependant children's program) were very nice but I was just a little nervous about them being here.  The reason that they came was so that Jackson could go ahead and start getting benefits from the program.  He was put on the waiting list while he was still in the NICU but the list is about 6 years long.  I need help before then so they have what's called the Rider 28 program.  With this they have to do an evaluation of Jack and then he has to stay over night (4 hours maybe less) at a nursing home that's 2 hours away.  Once that's done then he will automatically qualify for the Texas Medicaid Waiver and can get nursing hours. 

I know that their job is to evaluate him, it's just hard to have to answer the same questions I've been answering for the past year.  Does he roll over? No  Does he play with toys? No  Does he make eye contact? No  I told the nurse that what he is doing now (he was laying on his back) is all he can do by himself.  But she had to fill out her questionnaire so more questions came. 

After they left it was on to vision which he did really good that day.  He was in his black box and followed the light that Sheila was holding.  Then PT came.  Renee always entertains him by putting him in his stander and singing Itsy Bitsy Spider while she makes the hand movements for him.  He loves that song!  Next is the social worker.  This is time for Jack to rest and for me to talk about what's been going on with him for the past week.  I really enjoy my time with Melissa. 

Tuesday was uneventful but he slept most of the day.  I guess from being worn out from all the stuff on Monday.  So I knew that last night was going to be rough.  And I was right.  I didn't fall asleep til 2:30 and he woke me up at 4:00 crying.  We battled for about 3 hours.  Then today he had PT and speech.  I thought about canceling but I know that he needs it.  He was pretty sleepy during the session but perked up some by the end.  But he has had a lot of seizures today, 16 already and it's only 2:30.  Now, of course he's sleeping. 

Tomorrow we are having dinner with Mary, we met her at Lowe's.  She stopped us and said that her daughter is in a chair like Jack's.  Super nice woman and I can't wait to meet her daughter.  She's 17 and the docs told them that she wouldn't survive past a week.  She showed them. 

And Friday...what I have been waiting for all week.  SWALLOW STUDY!!  I've been testing out some keto snacks with Jack this week.  So far he really liked the applesauce with butter.  He made a terrible face at first but the consistancy worked well for him.  It was pretty thick.  I can't wait to start feeding him by mouth.  We have been waiting for the laryngomalasia to clear up before we really started with mouth feeds.  It's gotten so much better and he hardly ever makes "his noise" any more! 
Applesauce and butter YUM!
Posted by Tracy at 12:43 PM 0 comments

Friday, September 7, 2012

Scattered Thoughts

Today I am missing him so much.  Sometimes I will look at his pictures and think that he will be in the next room waiting on me.  Sitting in his Daddy's arms or having Sarah hug his head then pull on his g-tube extension. 
I will be having an OK day then it hits me.  Like a ton of bricks my world comes crumbling down.  He's not here for me to squeeze his knees or hold his little fat hand.  How I miss holding that hand. 
Every minute of everyday I think about him.  The wind blows and the wind chimes outside ring.  Sponge Bob comes on.  Sitting on the couch where he would lay.  Walking past his room.  Making quilts. 
I cleaned out his drawer in the kitchen today.  He doesn't need those syringes anymore.  It hurt me to throw them away. 
These are just a few of my scattered thoughts.  They hurt to write and then to reread. 
That's my boy

Thursday, September 6, 2012

Capturing the Moment

I have a wonderful friend, Deborah, that is also I photographer and a great blogger.  You can check her blog out here.  I met her in San Antonio and some may have seen my maternity pictures and Jack's newborn session. 

Well, today I received pictures that she took of Jackson's visitation.  I will say that I cried my eyes out when I saw the photos and knew that I had to share some of them.  She really did capture the moment.  It was so hard to look at them but they are absolutely beautiful.

Tuesday, September 4, 2012


Since I got such a wonderful response yesterday I created a PayPal account for Jack's Plaque.  If you want to donate and do not have a PayPal please contact me and we can work something out.  I really appreciate all the support!  I have such wonderful friends!!
Jack's Tree at the Arboretum

Monday, September 3, 2012

Jack's Memorial Tree

This weekend we went to Lexington to pick out Jack's memorial tree.  Soon after Jack's funeral a few friends got together and purchased a tree for him at the Arboretum.  This place is very special to John and I, when we lived in KY we would run the almost two mile trail.  It is a very beautiful place that has native trees to all parts of Kentucky. 
Friday we met with Marsha and she had us walk around to find a tree that we liked.  So we did just that.
We let Sarah run around and she loved it.  She had to pick up her feet up high in the grass but had so much fun looking in the grass and trying to eat the leaves. 
Searching for anything that she can put in her mouth.
Big steps!
We found a couple that we liked so we went back to let them know.  The first one was an Ash and they are having trouble with bugs so we decided against that one. 
Sarah and I in front of the Ash tree.
So here it is.  Jack's tree.  A Scarlet Oak.  I can't wait to see it in the fall when the leaves are bright red!
We want to get a memorial plaque for it but it is $500.  I was thinking about doing a fundraiser on Facebook to raise the money for it.  What do you all think?
The white dot in the middle of the picture is the
location.  Right above the Oatts Visitor Center.
Next time you're at the Arboretum go so hello to Jack!  I think I marked the map correctly but it's located right behind the picnic tables off of the parking lot.  It over looks the field where they did Shakespeare in the Park.  Thank you so much to Mike and Julie for getting everything set up and to everyone that pitched in for the purchase of Jack's tree!!

Memory Monday (Just Smilin') 9/28/10 - 2

Tuesday, September 28, 2010

I just wanted to include this picture because it was just so cute!!  This was Saturday we were buying computers and he was a little angel when we were at the store.  I don't have many pictures of him smiling because he really doesn't smile very often.  Priceless!


Posted by Tracy at 8:48 PM 0 comments

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