Thanks to Sunshine Foundation, Justin and Linda head to Disneyworld!

See the article from the Trentonian HERE.

Update from Linda on 8-8-2011:

Hi!  I know it's been a while, but it's time to share some info on my little man with you all...

I've attached a few pictures so you can see how Justin is doing.  He looks great doesn't he?  This week he will be finishing up school for the summer...what's left of it...until the new school year starts in September.  He's doing really well in school.  Adjusting nicely to all the noises and other children around him.  Justin does receive therapy everyday in class and he's becoming so much more relaxed.  We still have a long way to go before he walks again - if he ever does.

Unfortunately he is still suffering from multiple seizures throughout the day, but that's to be expected with his type of injury.  We just keep monitoring him and adjust his meds accordingly.  Just like you and me, he has good days and he has bad days - I just stay with him and let him know that I'm there for him.  It's an amazing thing for me to see, when he thinks I'm not around, he sort of just sits there in his own little world, and when he hears my voice he perks right up, almost with a smile.  He turns his head to find me and hear my voice, as if he's saying "yay, my mommy is here!"  He loves music!  I put on some music for him and I just watch him.  He listens...and enjoys it.  We often sit together and do nothing but relax. 

So at the end of the day, I guess you could say that he is slowly coming around, which is all I can ask for. 

Linda

Update from Linda on 2-25-2011:

Hello everyone...I've been so busy with Justin that I haven't had too much time to update you on how he's doing.

He recently turned 3 years old, and he's getting soo big.  He is so much more alert and trying to focus more on you when you speak to him, or when he hears a sound near him.  He's trying so hard.  And it's sad sometimes because it's like he wants to say something but can't, and he gets upset and cries.  While he can't make the crying sound, his facial expressions say it all...

Justin does still have the trach tube and feeding tube in place and will do so for the foreseeable future.  On the up-side, he is learning to eat by spoon again, and he's doing well.  Soon he will be going to have a study done called a Modified Barium Swallow to make sure what he takes in is actually going to his stomach and not into his lungs.

As far as his physical being, he's still tight throughout his upper torso, and tends to favor his left side a little more than his right.  He cannot walk or reach and grab things, but with his continuing therapy we hope to remedy this soon.  Plus, when he finally starts school - which won't be for a while yet - they will continue with all the therapy he gets now.

On the down side, unfortunately he is starting to have seizures again.  They are short - lasting only about 3-5 seconds at a time - but disturbing nonetheless.  We are having him checked soon and hopefully will have some information in the near future.

Well, I guess that just about covers it for now.  We have so much to do on a daily basis, that sometimes I just need to step back and take a breath...but it's hard.  But my buby (that's what I call him) needs me and I will continue to be there for him, no matter what.  I will try to send some pictures of him soon for you.

I miss you all and look forward to one day soon talking with my customers and friends and again!

Love,
Linda and Justin

Update from Linda on 11-30-2010:

So, Justin has been home for almost 2 weeks now - can you believe it???  He's doing really well, adjusting nicely and I think being home has helped him come around a little.  He's so much more relaxed and to me, he seems not be be holding himself so tightly...maybe because while we wait for his in-home therapy to start, his daddy has been his therapist.  Every day he massages buby's arms and legs and does some stretching, which he really seems to like.  We've been out several times and he handles it ok, but after a while you can see he starts to get fussy and wants to go home.  And aside from the few looks and stares from people (mostly adults),  our outings have been enjoyable.

Shane and Michael have also been a big help.  Shane because he can help with his meds and holding him to comfort him, while Mikey is his playmate...climbing in bed with him just to lay next to him and read him stories...gotta love that sight...

I am holding up surprisingly well.  A bit more tired at times because of the scheduling of the nursing at night time, but I'm used to not sleeping much. 

Well, I have to go now.  Almost time to medicate my little man.  I look forward to hearing from you...but don't tell anyone about the photos.

Thanks TJ!

Linda

Update from Linda on 11-1-2010:

How's it going?  We're ok here.  Just wanted to let you know that Justin really hasn't had too much of a change lately, but he's still doing ok.  He's not really tolerating the capping of his trach too well, so the doctor has put that on hold for a little while. 

On a lighter note, we do have a discharge date of November 17th.  We have a meeting scheduled for tomorrow with his doctors and team members to discuss his discharge and everything he will be needing at home.  He will, unfortunately, most likely go home with the trach in place.  I thought taking care of him while in the hospital and having the nurses do most of the work was difficult, but I realize that my work has yet to begin...

Justin will have a nurse at home because of the trach.  But I will probably only use her during the overnight hours..I will be taking care of him by myself during the day.  And although I am a little frightened at the thought of being by ourselves, I feel confident that I will do right by him and we will be ok.  One of the nurses made the comment that 911 will be my best friend...yeah that's what I thought on August 29th (but I'm not bitter or anything...lol)

Well that's about it.  I just wanted to update you - since I haven't done so in a while.

Talk to you soon.
Linda

Update from Linda on 10-15-2010:

Hi there. 

I was just speaking with buby's doctor a little while ago, and he said that Justin will be going home in about three weeks!!!  He's pretty much doing all of his breathing on his own, so they just have to see how well he can tolerate his trach being capped.  Once that is confirmed, they'll remove his trach tube.  That's when they'll make the transition to him coming home!  Oh my god TJ, I think I almost fainted when he told me that.

The results of the cat scan are good.  No swelling or bleeding, which I already knew.  The doctor said he will get better, but it will be a slow progession.  Hey slow is better than none at all, right?

When he turns 3 in January, he'll have to go to a special school that will continue with his therapy, but he shouldn't need a nurse at home.  We'll be able to take care of him ourselves.

Well I was so excited I couldn't wait to share this news with you.  I'll stop in work one day next week.

Bye boss!
Linda

Update from Linda on 10-4-2010:

Good morning!  I saw the website.  It's great, thank you.

I just wanted to let you know that starting today, Justin will be off the vents completely, day and night.  He does still have the trach in place, but hopefully not for much longer.  He is doing so awesome in therapy.  It was hard in the beginning, but he's become more relaxed and comfortable with what they're all doing.  He's coming around slowly, but he's a fighter, so he's doing all he can at this point.  He's going through a phase right now called "storming", which essentially is like withdrawal.  It's because of the brain repairing itself, but it's all normal.  There are times that there is nothing I can do to comfort him, and that's extremely upsetting, but I'll still do what I can for him. 
He is scheduled for another cat scan later in the week, so we'll see how is brain is doing.

I guess that's all for now.  You can forward this or add it to the website if you'd like.  I just wanted to let you know how my baby is...

Thank you for all your love and support.  You can reply to this if you want to.

Love,
Linda

Update from Linda on 9-23-2010:
Hi!  I'm sending you this update on Justin
Well, I'm happy to report that he has been transferred to Children's Specialized Hospital, just a short distance from where he previously was.
I am even happier to report that he is doing really really good!!!  In just the first two days, he is able to look at whoever is talking to him and respond accordingly to what he is being told to do.  It may take a few times, but he does it.  He is off all medications and for the most part doing most of his breathing on his own.  He does still need some help, but is able to be off the vents for a few hours each day with no problems!  The doctor's goal is to have him off the vents and to remove the trach tube completely by the end of next week.  I honestly feel that this can and will be done.
We will be busy during the next several weeks learning lots of new things to help him and to bring him home.  I have enough confidence in CSH to say that Justin will be back to his old self sooner than we think...yay!!!
I have attached a pic of him looking at one of his new nurses during his "get to know me" session.  Doesn't he look great?
Well, that's about it for now.  I'll keep you updated with more good news as it happens.
Linda

Email from Linda from 9-7-2010:

I don't really know what to say...I know you've been wondering about Justin.  Well, I will try to tell you - I guess the best is to just tell you the whole truth, no matter how upsetting it really is.
Basically, he is on life support.  Without the help of the ventilator, he will leave us.  But his daddy and I are not going to let that happen!  In a few days he will have a tube inserted into his throat that will help him breathe, instead of the one he has now that goes through his mouth and down.  It will be more comfortable and be better for the long term...
Unfortunately there is also significant brain damage.  I am not a doctor, so I won't even attempt to explain what's wrong.
Eventually my baby will leave the hospital and be transferred to a rehab facility.  It is there that he will get the help and proper therapy he needs to continue to grow.  After a while, we will bring him home and care for him in is own home.  This decision has already been made by my family.  We will NOT let Justin go without a fight.
Now please keep in mind that he is so young so there is the hope and possibility that he will recover and be just fine - which is the goal we are setting for him.
At this time, we ask that you continue to pray as hard as you can for him.  He needs all the love and prayers he can get.
On behalf of my family, we thank you for your continued love and support during the incredibly difficult time.
Love,
Linda and Family