Catching Up

Wow I didn't realize how far behind I was on Junior's blog. 
Though I guess it shows we are having a good but busy summer so far.  We headed to camp a couple weeks ago and had an amazing time while we were there.  Sadly a broken feeding tube cut our week short and we had to head back home after just 2 days.  Once that was straightened out we did get out for a little fun at the Jelly Belly Factory to help distract us from missing camp.

Camp fun ,opening ceremonies and the ice cream social.  We sat in the back during the opening to avoid sensory overload but Junior did so good and wanted to stay in the building for the whole thing.  Usually he asks to go outside fairly quickly. 

Arriving and getting everything into the room.  I had one very excited guy who was ready to go see everyone.

   

Being silly while eating ice cream.  It was so cold outside.  Junior didn't want to taste the ice cream but thought the cherry looked good.  He discovered he does not like maraschino cherries.  

  

 
Junior was exhausted by the time we went back to the room for the night but was still trying to convince me he needed to go back and out and visit with his friends.
 
Abby stopped by the room to tell us goodnight.  Can you tell it was freezing outside.

He spotted the watermelon at breakfast time and was sure he needed a taste.  This boy loves watermelon even if it is just a tiny taste.  Funny how before his trach he liked to taste tootsie roll pops and dr pepper but nothing else.  Now with the trach he wants to try lots of things and has discovered he enjoys lots of flavors.  I suspect not struggling to breathe all the time makes it much more enjoyable to taste things(he does not swallow well so by taste we mean very tiny tastes, closely monitored to be sure he is not risking aspiration,all his regular food goes in via his feeding tube).

 

 Having fun seeing all his friends

 

 

  

Imoji hats

 
Enjoying being in the center of the action
 
 
Square dance time.  I was so glad the feeding tube waited to break until after square dance.  It is probably his favorite thing at camp and this year he danced the night away.  He didn't want to stop and stayed for the entire dance. 

 

 

 Yes, we were actually the last ones to leave the square dance.  That is a first, usually at about the half way point Junior is tired and needs to go back to the room.  This year he did not want to leave and wanted to dance every single dance.  

 The tube broke during the night and we had to head home on Wednesday.  Many phone calls and lots of frustration(the term frustration would be a huge understatement) but finally on Thursday morning we were headed to the hospital for his tube to be changed.  Junior handled it all so well though we were all disappointed about leaving camp.
In the waiting room at the hospital.  

 

Ready for his tube change.  Junior has a GJ tube which means unlike a regular g tube which can be changed at home his has to be changed at the hospital in radiology.  The tube runs through the stomach and into the top of the small intestine so they have to be able to see that placement is correct.

 

Nice new tube. 

 When you miss crazy hair day at camp you have your own.

 

 

 Silliness at home.

 On Friday we decided to have a little fun to distract us from missing camp.  We headed to the Jelly Belly Factory.  A favorite spot and one we have visited every year since Junior was 2

 

 The Jelly Belly art gallery.  All the portraits are made out of Jelly Bellies

 

 So many Jelly Bellies

  
Early the following week Junior had a bug and wasn't feeling well. 
 
 
A few quiet days and he was back to his giggly, happy self.

 
Of course summer includes lots of fun activities.

 

 
Light box fun

  

 
Decorating a house.  He thought it was so funny to put polka dots on the roof.

 

Of course we must find time to plant some flowers during the summer.  

 

 

 

 

Junior had a very special visit from his parents and brothers yesterday which he really enjoyed and today is having a quiet day.  Allergies are bugging him so I suspect there is a fire somewhere making the air quality crummy.  We hope to get out for many more adventures this summer. 

Catching Up

Its been a busy few weeks and Junior's asthma has given  him a bad time but it is slowly getting better.  Today he even enjoyed a couple hours outside and a walk.

Monday the 29th was a very special day, it is the 16th anniversary of when this sweet guy came to live with me.  I am so blessed and can't imagine life without him.  He brings joy to everyone around him and keeps us all laughing with his goofy sense of  humor.
We went out to the party store for our traditional balloons and Junior had a great time.  A brand new party store had just opened and it has a huge selection of balloons, poor kid couldn't decide which one he wanted and was sure he needed them all.
He was a little overwhelmed by the party store but didn't take long to decide he loved it and couldn't wait to see everything.  

  
A new pet store opened up next to the party store so we stopped in there while we were out. 
 
This glowing aquarium was Junior's favorite.


Getting Junior's balloons home was the real challenge.  Poor Abby was stuffed in the backseat with the balloons.  Thankfully we live right around the corner from the store.  Junior thought it was hysterical though and laughed at her all the way home.

Scooby is life size

A few pictures from yesterday 

Playing with his toys outside. 

 

 Someone was so happy that he got to go for a walk with Mellisa last night.  He thought it was great that someone else was using wheels like him. 

Camp is just a few days away and this morning Junior woke up with fever.  As the day goes on he has no other symptoms except for being a little sleepy and wanting only his classic tv shows. Praying hard it is him reacting to this crazy, constantly fluctuating, weather and not sickness. 

 

Allergies

This time of year is tough on Junior with all the changing weather and things growing.  Sneezing, coughing, and congestion are currently our way of life, though it seems it is an especially bad allergy season and Junior is one of many dealing with this. 
Still he is very happy and in a great mood(aside from when he is needing his allergy meds).  Camp is coming up in just over 2 weeks so I am praying hard that the allergies will calm down so he can get his energy back for camp.  He is very excited and can't wait to go. 

Last week he had the stomach bug that's going around and spent a couple days in bed.
 
He is much better now though and back to his smiley self.  

 Now to get packed and ready for camp. 

Goofy guy thought these socks that look like shoes were pretty cool.

 

Sleep Study

Junior had a sleep study on Tuesday evening and did great.  He tried his best to make it a sleepless study but finally fell asleep so they could get the info they needed. 
During his last study his co2 levels were quite high even with oxygen on his vent but this time they were fine even with just his vent and room air.  Vent settings are all good so we didn't need to make any changes.   The real fun was trying to get the gunk out of his hair from the probes once we got home.

Thankful

Thank you all for the prayers for my dad.  He had a massive heart attack just over a week ago and miraculously he is home and recovering well.  We are so blessed and thankful for God's hand on him during this, if even one thing had happened differently the outcome could have been so devastatingly different.  My parents live out in the country and up until very recently getting an ambulance to them quickly was not possible. Now there are EMS only minutes from them.  Also my dad had not left for the church where he would have been alone when this happened, my brother and mom were both home with him as well.
For the next couple months he will wear what is called a life vest.  It is a wearable defibrillator that constantly monitors his heart.  He will then have tests to see what his heart function is.  If it has improved enough he will no longer need the life vest but if it has not improved enough they will schedule surgery to place an internal pace maker/defibrillator.
He is in good spirits and the hardest thing for him is being unable to be active for awhile. 
Thank you again for all the prayers.

My sister seems to finally be making some real progress and is slowly regaining strength and mobility.  She is decreasing her wheelchair use and using her walker more as she improves. Pain is still a problem but it is far more controlled now then previously.

Junior is being his happy, goofy self, full of energy and spunk.  Such a blessing to have this special guy who manages to make us all smile even during the hard and scary stuff that life throws at you. He is doing quite well aside from allergies.  Tomorrow he has a sleep study to check his vent settings and be sure no adjustments are needed.

Now for a few pics.
The smile when he recognized Lucy's(Lucille Ball) voice on a radio show he was listening to.  He loves listening to stories and we discovered some great ipad apps with old time radio shows.  He has been having a great time listening to them(current favorite is the Lone Ranger, with My Favorite Husband, and Sargent Preston of the Yukon coming in very close behind).  

.

 Singing and dancing with Abby.  I have videos which I was able to post on my fb wall but the files were too large to download to his blog. 

 

 

 

 

 

 A little Sunday relaxing.

  Some family goofiness.

 

Chick-fil-A feeding tube style.  On the way home from his GI appointment we stopped for lunch and Junior was soooo excited to get his own food.  We don't do this often but occasionally I order him his own meal and then blend it for his tube(minus the drink of course).  That purple in the container is his grilled chicken nuggets, a fruit cup, and then I added a grain once I got home to make it a more complete meal.