School Fun

Junior started a unit on elephants during our school session today.  He had a great time looking at pictures of elephants, reading about them, and using a measuring tape to see how big they are. 
We looked at their tusks and measured how big they would be and compared them to our teeth.  Junior thought that was quite funny.  Then for fun we did an experiment which uses chemical reactions to make elephant "toothpaste"(foam).
He helped me mix the various ingredients and then we poured them in the bottle to watch the reaction.  Of course you can't have toothpaste without a toothbrush and since it is elephant "toothpaste" we needed a really big toothbrush.

 A couple pictures from the collage by themselves so they are easier to see.

Playing in the foam left from the "toothpaste".

 Ipad fun, he was matching sounds to the animals. He was being a goof and pretending to sleep when I grabbed the camera.

Relaxing with his sensory board

 

Moon Sand Fun

We finally got a little rain this weekend which was a huge help.  By late this afternoon Junior was feeling much better and wanted to get up in his chair and play at his sensory table.  He loved having the window open so he could look outside while he played.


I managed to sneak in a little school time and we worked on measuring.  He would use his ipad to tell me whether he thought an item was lighter or heavier, then we put the items on the scale to see if he was right. 

He of course thought building a castle was much more fun.

Not sure if you can see his castle clearly in the collage so here is a pic of it by itself.  Doesn't every castle have Spider-man guarding it. 

After the castle building he told me he wanted to play basketball but then promptly fell asleep before I could get it set up.  Castle building wears a guy out.

Sinus Troubles

Junior hasn't been feeling very well and we have been trying to figure out whats going on. 
The last few days he has had lots and lots of wetness around his trach and it is coming from his upper airway and not his lungs.  So looks like he has a sinus infection and he is now on antibiotics.  He is already feeling a bit better this afternoon and we hope it continues.

Now a few pictures from our week.
Coloring with his markers.

 

    

A little basketball but he was getting tired by this point. 

relaxing and watching his shows

 

Dr. Pepper

If you have followed our blog for long you know that Junior loves Dr. Pepper.  He can only have a tiny bit but to him it is the greatest treat possible.  In fact extra tough doctors appointments are called Dr. Pepper appointments because we stop on the way home for his special treat.
For awhile now he has wanted me to make him Dr. Pepper trach pads but I have been unable to hunt down fabric.
I finally contacted Dr. Pepper to see if they could tell me where to find the fabric and told them a little about Junior and his love for Dr. Pepper.  They very kindly got right back to me to let me know that no they don't have fabric available but would like to send him some Dr. Pepper gear.

Today Junior got a very special package in the mail.  It has been a rough few days with all his allergies and also some autonomic issues left over from his seizure last week.  The package arrived at the perfect time and brought a huge smile to his face.  He was so excited and had to put on the hat right then and wore it all day.  He even fell asleep with it on.
 Thank you Dr. Pepper, I am quite sure Junior's words today would be Dr. Pepper rocks!!!!!

 Sound asleep still in his hat.

 
In Junior's special package were a couple large handkerchiefs with the Dr. Pepper insignia all over them. I used one to make Junior the Dr. Pepper trach pads he has wanted so badly.  Perfect and he is one happy dude.

Wind

This time of year the allergies are bad but add wind to the mix and things are really not fun. 
Junior had an endocrine appointment yesterday so actually had to be out in this wind and was not at all happy about it. 

Isn't that face heart breaking, don't worry it didn't last long.  After he let me know he wanted to watch Lucy and that this was indeed a Dr. Pepper appointment then he was okay.  Thank goodness for his ipad.
We stopped on the way home for his much deserved Dr. Pepper treat and he was one happy kid.  Here he is with a smile after we got home and he had a little of his treat.

This morning the seizure monster visited and Junior is now sound asleep and will probably need to sleep most the day.  When his allergies are bad it can lower his seizure threshold and make him more likely to have one.


My younger brother Andrew is a junior in college this year.  During his summer break he will be working in Eastern Europe with Mission to the World.  He will be spending about two months helping out where he is needed.  Please pray for his safety and that God will use him to help others and reach many lives with the gospel.  He is greatly in need of prayer and financial support to make this trip happen so if you would like to support him you can do so at THIS LINK.
This is Andrew with Abigail when she visited them in NC this past summer. 

 My parents, brothers, and Abigail.

Our Week

Wow, it has been almost a week since my last post.  Our week started off rocky with some crazy weather moving in which caused issues for Junior. 
On Tuesday Junior had his regular Shriners appointment and spinal x-rays.  He did fantastic.  Typically spinal x-rays at Shriners mean total meltdown for Junior the moment we walk in the room. He acts as if the little bench he sits on for the x-rays is a torture device and it makes for an all around bad appointment.  This time he didn't complain once and in fact was smiling and "chatting" while getting his x-rays.  Then we had to wait 2 hours before seeing the doctor and he still handled it all like a champ with no complaints.
He is done growing(or at least at the very end and isn't expected to grow more then a very small amount if any) so he doesn't need to see this doctor for a year, yeahhhhh.
Patiently waiting for his x-ray

 Being silly while waiting to see the doctor. 

It rained our entire drive to Shriners but thankfully stopped before we headed home.  Part way home  it started up again and the skies were black.  Off to one side we could see lightning and even though it  was a bit scary it was also an amazing thing to see.  At one point Junior got very nervous and I cold see we were on the edge of tears.  I told him it was okay and God was putting on a show.  He seemed to think about that for a second and then decided it was kind of fun to watch the storm.  The storm was not over us and we were only having a sprinkle of rain but were able to watch this huge storm in the distance and could hear it.  I can honestly say this is the first time I have ever experienced something like this.
As we were getting near our home I noticed what almost looked like snow on every ones roof and also noticed patches on the grass and road.  Turns out they had, had a big hail storm while we were gone.  This is what our yard looked like.

 A happy kid relaxing after his long day. 

Thursday morning Junior decided he was ready to get out of bed and I wasn't moving fast enough.  He took himself off his vent and was quite proud of what he had done. 

 Yesterday Abigail came over and Junior enjoyed chatting with her and of course getting a big hug.

 She brought her senior pictures to show us and here are just a few of the many, many great pics.
 
  


 
During part of the photo shoot she put on her trach shirt and used the book she had written about Junior as a prop.  Loved these and Junior thinks it is fantastic that he is in some of her pictures. 

This morning Junior needed his trach changed and totally rocked it.  I am sooooo very proud of him.  Usually it takes two people and he needs meds to keep calm for the change.  This morning after his shower I grabbed the stuff I needed to change the trach but set it up without letting him see what I was doing.  I turned on his ipad with music and we chatted and sang along while I quickly undid the ties and pulled out the trach.  He coughed once and then a big grin as I told him how great he was doing and he was back to "singing" with me.  Got his neck and stoma cleaned while we were being silly and singing and then slid the new trach in.  A few coughs but he did fabulous and was very proud, he had to call "aa-a"(grandma) and tell her what a big guy he had been for this.

This picture shows what Junior's trach stoma looks like without the trach in.  His stoma actually looks really good and has healed up great.  The dark area is just some scar tissue and not irritation. 

 Junior is relaxing this afternoon and watching Scooby-Doo after first watching Home Alone 3.  He is needing a little extra vent time because of the clouds moving in and out as well as some wind but is happy and doing really well. 

Happy Easter

Happy Easter everyone.  Christ the Lord is risen today. 

Junior's allergies continue to be an issue so getting out to church today was not an option.  He still wanted to dress up in his Sunday clothes and we listened to church on his ipad.  His reaction to hearing papa preaching always makes me laugh(my dad is a minister in NC and it is great to be able to listen to his sermons via internet).  He will burst into a smile and then try to talk to him.

Junior loved wearing his Spider-man tie and thought he was so cool in it.
 
 The many faces of Junior.

Last night I gave Junior his Easter surprise.  He was having a rough time but seeing his basketball hoop which he could play with inside, put a big smile on his face.

Clouds have rolled in and we are praying hard for even a little rain.  Rain would make such a difference in Junior's allergies and allow him to even go outside. 

Easter Eggs and Allergies

Earlier this week Abigail came over to color eggs.
First they got everything set up and discussed the colors. 

Then time to color the eggs

They couldn't decorate the eggs until they were dry so decided some stories were a good idea. 

 Yesterday Abigail came back over to decorate the colored eggs.  There is a lot of wind and a storm is moving in so Junior's allergies are very bad.  He enjoyed the decorating but tired out quickly and wasn't his smiley self.

Today Junior has been on his vent and sleeping most the day.  We are praying that all these clouds mean we will actually get some rain.  We need it so badly and it would sure help clean this air a bit.
Here he is snoozing with monkey. 
Today is his friend Bryson's "B's" angel day so Junior wanted to wear his B shirt.  B's amazing mom Amanda is in our thoughts and prayers today. 

While Junior was snoozing I worked on his Easter surprise.  Now that he is older he doesn't get excited about a basket and he also doesn't eat candy.  I found this mini hoop on sale and thought it was just right for him. I went through my pvc scrap bin and found enough pieces to make him a mini ramp to go with it and I think Junior will love it.  If you are curious I did a post on our adaptions blog about how we adapted the hoop for Junior and made the ramp.

New Glasses

Someone got his new glasses today.  He wasn't sure he liked them when I first showed them to him but then I put them on him.  Junior then decided they were very cool because they help so much.  His eye doctor wanted us to go with this style because the frames are very flexible which allows him to wear them all the time. 

He is having a rough time with his allergies this evening so is on his vent now and watching I Love Lucy.