17 Years

Wow, so hard to believe it has been 17 years since a tiny, sweet, smiling, boy joined my family. The journey has been a roller coaster with plenty of ups and downs, some scary turns, and some truly amazing moments. I can't imagine life any different and am so honored to have the privilege of caring for and raising this special guy.  He is a happy, energetic, determined, stubborn, smart, and caring young man who never lets anything get him down for long. He loves life and makes the most of every moment.

Now for an update as we celebrate this day.
First we will start with a health update: Junior has his ups and downs but overall is doing amazing.  This past Sunday he hit the 1 year seizure free mark which is a huge miracle.  His asthma can be a challenge but with the trach it is much more manageable. He eats through his J tube but can now tolerate some small amounts of food in his G tube which is not something we ever expected him to be able to do.  He no longer needs his glasses since his muscle control has improved and with it his vision.  He no longer struggles with pain/discomfort if in his brace or chair for long periods of time which means he can really enjoy getting out.  We have found that the seizures were affecting pretty much every area of his life.  Not having them has been life changing for him.  Having him cry or melt down has become extremely rare now since he is better able to focus and communicate what is wrong  without getting frustrated and stressed out as quickly.  I used to need to grab his weighted blanket for him at least a few times a week to help him now we can go a month without needing it.
Junior continues to need his vent about 20-22 hours a day but it doesn't stop him and we know the trach/vent is part of why his health has improved.  No longer  having to struggle to breathe has most certainly had an impact on decreasing his seizures. The trach has been a game changer from the moment he got it.  
Health struggles are part of Junior's life and always will be but we feel so very blessed to see so many positive changes.

Now on to the update on all things Junior:  Junior is 19 and in many ways a typical teen.  He can have his cranky, moody moments, and his stubborn streak might be considered one of his super powers. Though his greatest super power would be his smile which he loves to share with everyone.

He loves Star Wars, Spider-Man, and recently added Jurassic Park to the list.  As far as TV goes he still loves his classics such as I Love Lucy, Andy Griffith, Dick VanDyke, etc. he also loves the A-Team, Hunter, Commish, Psych, Bones, NCIS, Flashpoint, Chips, and the list goes on, and on.
Since the seizures stopped we have seen him really branch out on what he wants to watch. 
He really enjoys arts and crafts activities and anything that makes a mess.  Except for homemade slime, he hates touching it, though the kind you buy he likes. He loves to play in water beads or insta snow and add his matchbox cars or Star Wars characters to them.  He also really loves science activities and any kind of experiments.  Adapted board games, puzzles, and switch toys are also things he has fun with especially now that he has Yonder to play along.  When allergies aren't too bad we spend a lot of time outside on his swing or just hanging out on the porch.

 

Unless you are new to his blog you know about Junior's new buddy who joined us back in November.  Yonder is a skilled companion dog(assistance/service dog) from Canine Companions for Independence.

He and Junior are best buddies and he helps Junior with every thing from opening doors, to taking his socks off, or getting laundry out of the dryer. Yonder has decreased Junior's stress level at doctors appointments a huge amount.  As an example at his last dental appointment Junior was actually smiling and totally relaxed during his cleaning, I was standing there totally amazed that  this dog could make that big of a difference.   He is not trained as a medical alert dog but more then once now he has let me know when Junior was in distress even before alarms went off or I realized he was struggling.  Yonder goes everywhere with Junior and they both love going on long walks, especially when those walks take us to Hobby Lobby, the pet store, party store, or Target.
Yonder has been a bridge between others and Junior.  He helps people see past the chair and medical equipment to the amazing kid who uses those things. It is rare that stares are not accompanied by a smile now, and often a hello, cool dog, whats your dogs name, etc.  Junior notices the staring and rudeness of others and it had been affecting him(tears, anger, not wanting to go out).  His pup has been a huge self esteem/confidence booster and now he loves going out.  The rude type stares or comments are now very rare but when they happen I don't see the hurt on Junior's face, instead he often will roll his eyes then grin and look for Yonder.

 

 

Yonder and Junior are the perfect team and keep us all smiling(Yonder is all business when he is working but when off duty is a total goofball who keeps Junior entertained).
We joke that Junior's smile is rubbing off on  Yonder and you can often see him with a smile on his face when we are out for our walks.

 
 We are looking forward to a fun filled summer and can't wait to see what adventures we can find.

365 Days, A Miracle

Today Junior hit a huge milestone but milestone doesn't really fit this picture.  The only word that really works is miracle.  365 days, 1 entire year without a seizure.  A moment that could "NEVER" happen for Junior, an impossible moment, a moment we could never even hope for.  A child who at one time had 15-30(sometimes even more) seizures a day and has a diagnosis of Lennox Gastaut Syndrome.  When we hit one seizure a month we were thrilled and this was the best control we could hope to achieve.  One was so much better then we had, had in the past but that one seizure a month was bad and took several days to recover from.
A year ago I never imagined being able to write this post but here we are celebrating a miracle.  A completely life changing miracle that has affected every part of Junior's life.  We are so blessed and thankful for every moment.  God is good.

We started off the day with a walk before it got too hot then relaxed and celebrated.  Balloons and a model to put together and of course a nap after the excitement.  Later Junior wants to taste some chocolate frozen yogurt(his new favorite food, he is even requesting it over Dr. Pepper, gasp).

 

Checking out his new model and balloons

 Abby stopped by for some silliness

 

 

  Putting together his model.

 Life is a gift and this amazing journey has taught me so much.  One thing being to never lose hope, there may be a miracle right around the corner. 

2 Days

Busy couple weeks so I haven't gotten a chance to post but had to share that we are just 2 days from Junior's 1 year seizure free mark.  Junior's last seizure was May 27th of 2017.   So much to celebrate this weekend.

Happy Mother's Day

Happy Mother's day to my amazing mom and all the other mom's out there. 

Abigail helped Junior and Yonder get me this beautiful frame for Mother's Day and I love it.
I am so blessed to have the privilege of raising this awesome guy. 

 

We are also celebrating 351 days seizure free.  This means Junior is just 2 weeks from reaching the 1 year mark.  Truly amazing to watch this guys impossible become his reality. 

Now a little catch up since I haven't posted since May 1st. 
Life has stayed busy and it has been very windy so Junior's asthma has been a challenge.  On one of the particularly rough days Junior made it clear he needed his trach changed.  What can I say the trach has changed his world.  When his asthma is bad he can still function because he can easily stay on his ventilator all the time and we can keep his airway open and clear.  When the trach does get gunky there is no panic as we try to get him to cough to clear his airway or deep suction.  I can pull the trach out and put in a new one or suction his trach to get it clear.  Look at that smile, he totally rocks this trach life and being a "neck" breather sure doesn't stop him from getting the most out of life.
Junior was sure Yonder needed to "help" with the trach change but dog hair does not make a good trach accessory so he gave his support from a distance. 
(FYI: Junior was asked if it was okay to share his "trach out" photos and he approved, he likes others to see that its not scary but simply another way to breathe just like his nose or mouth)
  
When the trach is out this is what it looks like. 


New trach is in.  Get those ties on quick or I am going to cough that thing across the room.  Boys got mad trach shooting skills. 
 


Can't miss those walks.  Pics from a few different days of walks.
 






Always new friends to be made.  This little guy was keeping an eye on us as we walked by.  There are lots of them and Junior loves to see how many we can spot on our walks(last walk he spotted 8).  Yonder on the other hand thinks they are scary little monsters who must be avoided.

With the weather warming up quickly we are working hard to get Yonder fully adjusted to his shoes. 
He is not a fan but he is now doing quite well in them in the house.  Next goal is getting him adjusted to using them while outside.
  
Relaxing on the porch on one of the less windy evenings this last week.

Junior is sure he is too old for anything with the Incredibles on it but was sure Yonder needed his dog pad made out of it.  Yonder approves. 

 
Junior was happy this appointment was for Yonder and not him.

Poor pup decided having to get a shot is completely exhausting and a long nap was necessary.  You probably notice that he is frequently on the couch in pics.  Not something I had planned on allowing him to do but it turns out that having him up there once in awhile puts him up where Junior can see him.  I have been careful to make sure he knows to ask before getting on the couch or any other furniture(will go to the couch and stand there looking at me until I tell him whether he can get on it or not)

 

Shopping,Walks, and Smiles

We have had a little rain but mostly beautiful spring weather.

Junior and his side kick continue enjoying their adventures and it seems that Junior's smiling superpower is rubbing off on his dog. 

 

 

This weekend their adventures included a trip to the mall with Abby and Mellisa. 

 

 

 Sometimes you need a break, so a little people watching was just the thing.

Sunday was a rough asthma day so movies, Star Wars toys, extra treatments, and naps were just the thing.

 Yesterday we were off for a walk to Target where Junior was sure he needed to take this guy home(sorry dude not happening).

He was recently introduced to the Jurassic Park movies(a huge hit, he thought they were great), so thought this guy was very funny.

 Then we headed across the street to Hobby Lobby to pick out some stickers for an art project they are doing. 
Yonder found just the perfect stickers for his boy. 

Today we headed out for our morning walk and Junior was sure we needed to visit Hobby Lobby again.  Since we decided to make two of the art projects so he can give one as a gift he had fun getting a few more stickers. 

Someone is not impressed with my need for a picture in front of the roses.  Smile, your kidding right???