Purple Day - Past and Present

Today is Purple Day.  A day to bring awareness to epilepsy.  Each year we wore purple and will continue to do so in memory of Jack. 

 

 

2011

Pregnant with Sarah here, Jack
could barely fit on my lap.

During picture taking Jack had a
seizure.  This is what he faced everyday.

 

2012

We all wore purple last year.

Picking up his new AFO's last year on
Purple Day.

2013

My jewely and shirt from today.

This is about the best pic from the bunch and Sarah
wasn't even looking at the camera.








Blurry!  But look right over Sarah's head.  Jack peeking
over at us.  We love and miss you so much little man!



Memory Monday (Updates) 11/15/10 - 21

Monday, November 15, 2010

Updates

I finally talked to Jack's neurologist today.  I put a call in last Monday for him to call me.  After a second phone call to his nurse and complaining about having to deal with too many neurologists, he called back within the hour.  Since I had him on the phone I bombarded him with questions.  We were on the phone for about 20 minutes and this is what I got from it:

-Can he start Baclofen?  Yes, starting tomorrow!!
-Rubinol?  Hold on that, he only likes to start one med at a time.
-Melatonin?  Holding on that one too, the Baclofen may help with sleep so he may not need this.
-He has had a sty on his eye for about 2 months.  And now has 4 more!!  So I asked if he could give him something for this.  It will be an ointment to put on his eyelids to decrease the bacteria.  (Not brain related but his neuro will do anything for him)
-I informed him of the change in his seizures.  They are now longer and more violent.  He was concerned about this and is going to talk to the keto team about this. 
-Any chance we can wean Keppra?  Nope.  He thinks that we would see an increase in seizures.  With the change in his seizures he thinks we may need to increase medication or change meds all together. 

He didn't tell me anything that I didn't know but every time I get off the phone with any neurologists I feel let down.  Kind of like he took the wind out of my sails.  It's nothing against him, I just wish I didn't have to deal with any neurologist!

 On another note...he had vision and physical therapy today.  He did pretty good with both.  Once he woke up.  It took his PT and I over half his treatment time to wake him up.  She worked on sitting against the couch and he held his head up a few times! 

The rest of the week should be busy.  Tuesday I have to go get his news meds.  Wednesday he has speech therapy and Gary from South Texas Medical is bringing his new equipment (light box, communicative devices and buttons).  Thursday the dietitian will come to weigh him.  All together he and I have 8 appointments this week.  These are the times that I am so glad that I have help! 

Speaking of help...she's working out well.  She gives him a bath when she gets here.  That alone takes so much off my shoulders.  This means that I don't have to try to fit it in my crazy schedule in the evenings.  And if John is out of town (like now) I really struggle to do it on my own. 

 He is consistent with feeding now.  This is definitely a first for him.  It takes him only 10 minutes to get his snacks down.  When we started it took about 30 minutes!  Maybe one day we will be able to decrease his tube feds and increase eating by mouth.  That's a good goal for him!  And me!

 

Posted by Tracy at 5:42 PM 5 comments

Labels: Feeding, PT, Seizures, Speech, Vision

Memory Monday (Catching Up) - 11/9/10 - 20

Tuesday, November 9, 2010

Catching up

It's been a long time since I've been on here.  I've been busy and lazy all at the same time.  Here are the highlights of the past week.

Grandma was here for Halloween weekend.  She got to watch Jack while John and I got to spend some time together. 

Jack's nurse came last Wednesday.  As I got ready she got him dressed and kept him company.  She also got all of his meals and medications ready before I even thought about it.  He had 4 other appointments that day.  PT, OT, Speech and case management for ECI.  I've decided to cut back on therapies for a while.  I do most of the therapy on him and Jennifer will be able to help with it now. 

Friday we went to the mall and he was so good.  He got mad once but he just wanted to be held.  I think he was taking it all in.  The last picture was in a fitting room.  He kept moving his head to look in the mirror.   A little later he was picking his head up off of his head rest.  A small accomplishment!!! 

Monday was his 18 month check up.  His pediatrician has been following him since the NICU so I don't have to go through his history.  He is going to put him on Melatonin (for sleep) and Rubinol (for drooling).  Of course I can't just pick those up.  We have to get approval from the Keto team in Houston.  I spoke to Dr. Schultz today and she said that all of the medications have carbohydrate in them but they were OK for him to take.  Hopefully, we will be able to get those soon. 

I have a call in for his Neurologists in San Antonio about starting him on Baclofen (for high tone).  He mentioned it last time we were in for Botox but didn't want to start it due to him just starting the diet.    I am cautious about starting more medications but I feel like all of these will make his life a little better. 
Today the nurse case manager came over so I could sign the paperwork for Jack to start his CCP hours with Medicaid.  Jennifer starts full time tomorrow!!

He lost a little weight since November 12th.  He was 28.8 lbs (with clothes on) and now is 26.11 lbs (without clothes).  Emily (keto dietitian) said that he is now in the 50% so we will watch him closely to make sure he doesn't drop any more.  If he does then she will increase the amount of food that he gets. 

Feeding him has been about the same.  He takes it down once I get it past his teeth.  Dr. Easter said that the Baclofen will help with his tight jaws.  Right now we are working on green beans with butter and cream and carrots with butter and cream.  He seems to like both.  He makes a face with just about every bite but continues to open his mouth (a little) and swallows.  He still fights a little and knows how to let it fall out of his mouth.  He will turn his head to the side and the food just slides out.  I have to be prepared at all times. 

His seizures have decreased a little with the ratio increase.  He's now at 4.25:1.  He was averaging 15 a day and now it's down to 12.  There was one day that he only had 6!!  Another small accomplishment! 

These are just some cute pictures that I took the past week. 

Just a cute face.

 

This is Rusty "Checking on the Baby"

 

He was actually looking in the mirror!

I didn't know

Jack's passing was sudden.  I didn't know that Saturday June 30, 2012 would be my last day with him.  I didn't know when I put him to bed that it would be the last time he would sleep in our home.  I thought I had many day, months, years to spend with him. 

I didn't know that his first Christmas being a big brother would be his last. Or that he only had a short time with us after Sarah's first birthday. That this would be the last picture that I took of him alive.

It's blurry because I was trying to take a pic of me feeding him.
The next one is better.

See much better.  Letting him taste kiwi for the
first time.

I can't say that I would do anything different because I can't change the past.  I don't think about trying to change it.  I have to live now or I would be an absolute mess. 

His birthday is exactly one month away.  I dread that day.  I don't get to kiss those sweet cheeks or hold his little fat hand.  We have constant reminders of him but holidays are the worst. 

For his birthday John, I and many friends are going to be running the Nashville Rock n Roll Marathon and Half Marathon in memory of Jack.  The training has really helped keep me focused and gets me in the gym.  Yesterday I finished 9 miles.  It may have taken me over two hours but I felt great after. 

Here is the back of the shirt we will be wearing.

Who knew that I would actually want to run 13.1 miles but I do.  Only for my boy!