Our Sunday

Junior was up quite a bit during the night complaining of a tummy ache so I wasn't sure how today would go.  He is tired but still his smiley self.  This afternoon his asthma has hit so he is now sleeping after some extra treatments. 

Happy guy during stander, music and Sunday school time this morning. 

 Craft time.  Yes feeding syringes also work great for painting. 

Fun and Asthma

Junior has continued to do great with getting up earlier and making it through all his regular activities and even going for a walk.  He is wiped out by early evening but I am so happy to be getting back on a better schedule.  Hopefully we are leaving behind the winter illnesses.  His asthma did kick in Friday afternoon and made for a tough remainder of his day but that is part of life this time of year.

Enjoying the great outdoors.

Music time while in his stander(looking very sleepy, this was Friday when the weather was changing)

Visiting with Abby

 More eggs for the tree in his room.  These are shaving cream eggs.  So much fun and easy.  We cut egg shapes out of poster board then put shaving cream in a little tub and drizzled food coloring over it.  Pressed the eggs into the shaving cream then let them dry.  As the dry most of the shaving cream evaporates and you are just left with the color.  I did wipe them off this morning with a paper towel to be sure all the shaving cream was gone. 

It was hair cut time today.  Look at that grin, this boy thinks getting a haircut is sooooo much fun.  

 Brace update:  He is doing awesome with his night splints now.  He is up to 8-9 hours in his braces overnight which means he has met/exceeded his goal.  As you can see in the pic we did have to adjust things a bit for him.  Junior has chronic low platelets from his seizure meds and no matter how perfect a brace fits it will eventually leave marks.  Thankfully we were able to easily fix the issue with a piece of memory foam between his fingers and some super soft fleece.  This morning he had no marks or redness at all.  His fingers are more flexible now and continue to be able to extend more without causing him discomfort. 

Sleepy But Good Day

I am trying hard to get Junior on a better schedule, meaning getting him to go to sleep before midnight and out of bed at a decent time in the morning.  After he has been sick it is sooooo hard to get him back on track, and this has been one crazy winter.  Yesterday he got up early and was doing fine.  He got all his morning treatments and exercise done but then midway through his standing time he got hit with an asthma episode and things kind of fell apart from there.  
I tried again today and yeah we had success. He had a great morning with no "bumps" during his treatments, exercise and standing time.  We even got out of the house for a walk on this beautiful day.

     A short nap and he was ready for school.  He stayed focused and did really well.  He enjoyed making a rain stick(we are doing a music unit) at the end of our session and of course thought it needed Star Wars stickers.

Some reading time, Narnia has been a big hit with Junior and he is very into the book.  I ask him questions at the end of each chapter to be sure he is listening/understanding and it is rare for him to miss even one question.

During arts/crafts time he decorated eggs to hang on the tree in his room.


Last night Junior wore his new hand splints while he was sleeping for the first time.  He did awesome and didn't complain or ask me to take them off.  He had them on 7 hours and the goal we are working towards is 8 hours so he is almost there.

Please pray that tomorrow is another good day with no major asthma issues. 

New Splints

Junior has been using his new hand splints for a few hours each day and today was in them nearly 6 hours.  He absolutely rocked it and didn't complain once about them.  When I took them off there was no redness or skin issues so tomorrow night he will wear them for his first night.  It is hard to have him in a brace like this so many hours during the day because he can't use his hands/fingers when in them so I am so happy that he has adjusted to them so much quicker then we thought he would.  Now he will wear these at night and go back to his regular splints for daytime use. 
The bottom corner picture he is back in his daytime splints so he can play with his toys. 

 I already see a difference in his hand tightness and range of motion, also his pinky fingers which were the biggest issue are both straightening more then they were.  This is only day 4 so hopefully with regular use we will continue to see improvement. 
Little dude being goofy.  He wanted Chewbacca and his toy snake to play with, he knew aunty Mellisa was coming over and he could scare her with the snake. 

Shriners

Today Junior had his Shriner's appointment to pick up his new resting (night) hand splints and have them fitted.  We got there a few minutes early and then found out our appointment time had somehow gotten changed so we would have about an hour to wait. 
The kids didn't mind because the orthotics dept is on the second floor where there is a wheelchair accessible play ground area outside on the roof. 
We spent a few minutes out there before the wind picked up and we had to go in. 

  
There was still plenty of time before we would be seen so hunted down some more fun.
Video games and then coloring a Star Wars picture, with markers of course. 
 
 
The fitting for his new hand splints took a little while but Junior had his ipad to keep him distracted. 
It will be awhile before he works up to wearing the new splints all night but it looks like they are going to work.  They heated them, then got them just right and cooled them so they held the correct position.  If he has any growth or hand/wrist changes they can again be heated and remolded.  He wore them for a couple hours today and will do the same tomorrow and if that goes smoothly we will increase by one to two hours a day until he can tolerate them all night. 

 I have a totally wiped out boy tonight who wanted to get in bed and watch a movie the moment he got home.  He did really well all day and in fact much better then we expected.  Having him on the vent while in the car has ended up making a huge difference on how he tolerates outings.  Today with the weather change we knew it could be an extra tough outing for him so also brought along his mini weighted blanket(it is what you see on his lap in the pics).  I folded it and laid it across his lap and it definitely seemed to help him cope and be able to enjoy things even at a doctors appointment. 

Up and Down

Junior is doing okay though today is an "asthma" day because of the changing weather.  He isn't up to much and is hanging out in his chair napping and watching his old shows.

  

A little coloring before treatment time.  I have no idea why he thought Darth Vader needed a yellow face but he was quite insistent that, that was the color he wanted.

  

The last few days have been quiet for him but he has tolerated his activities and even his back brace.

 

Friday Junior was having a pretty good day and had just finished his exercises and treatments.  He was in his chair under his solar system when his numbers started trending in the wrong directions.  Heart rate and resps were spiking and oxygen levels dropping.  I realized even before I heard the whistling noise from his trach that he was plugging.  Onto his bed and the trach pulled out and I then had a boy with a big grin on his face looking at me like couldn't figure out what all the fuss was about.  I got his new trach in and he was smiling the whole time.  Never a dull moment in our house.

 This was Saturday, he got this toy snake and thought it was very funny.  Of course his favorite part was being able to scare Aunty Mellisa with it.

Curious George also had surgery on Saturday to get a trach and g tube.  He will soon be on his way to a special little friend who is having trach surgery this week.  Junior needed to give it hugs and love to take to his friend. 

 Mr. Sleepy on Sunday getting his Valentines day surprise.  He was one happy dude when he saw that it was his favorite Star Wars figure. 

 Yesterday Chewbacca fell off Junior's tray and his leg fell off.  That sad look on Junior's face was caused by this disaster.  Thankfully it could easily be snapped back into place and as soon as Junior saw that it was no longer broken he was back to smiling and watching his movie.

 Hopefully when the rain rolls in tomorrow Junior will get some relief from his asthma.  Weather changes are always hard on him and he is a much more accurate weather forecaster then any weather channel. 

Star Wars, Smiles, and Fever

Junior had a really good day yesterday and was a very happy guy.  Really nice to see him feeling better. 
He has watched the newer Star Wars movies before but had never seen the old ones.  He watched the first of the old Star Wars movie yesterday afternoon and loved it.  It was more fun watching his face then watching the movie.  This boy was totally into the movie and quickly made it known that his favorite character was Chewbacca.  He would grin and get so excited anytime he saw him on the screen. 
Watching Star Wars and enjoying playing with his super hero figures in insta snow.

Today he started out okay but by this afternoon his heart rate was on the rise and he was acting like he didn't feel well.  He wanted to play with his water beads but as you can see looks exhausted.  Even on his vent his heart rate stayed up and a quick temp check let me know his temp was on the rise. Tylenol on board and he is now watching Lucy and napping.  Poor kid has had quite the winter.  Please pray this is just a little bump and he feels better in a hurry.


This past weekend Abby and my sis came by and brought Junior Minion balloons for Valentines.  He thinks they are wonderful and loves watching them bounce around.  

Feeding Tube Awareness Week 2016

This is the post I shared last year for Feeding Tube Awareness so I thought I would share again.

It is feeding tube awareness week and Junior is very proud of his tube.   It allows him to live his life to the fullest and helps him stay as healthy as possible.
Junior had his feeding tube placed when he was an infant so he doesn't remember ever
not having a tube.  To him it is "normal".

 Now for a little info about Junior's tube:
When Junior was younger he had what is called a G-Tube or Mic-Key button(when Abby was little she heard us use the term Mic-Key button and called it Junior's Mickey Mouse button).  With that tube all his food went straight into his stomach.  After several illnesses which were caused by reflux it was determined that a GJ-tube would be better for him.  Now the tube is called a GJ-Tube and is also still referred to as a Mic-Key button.  With his GJ-Tube there are two openings. 
 Junior's GJ-Tube.

   

With the GJ-Tube the top port(J-tube)goes into the top of his small intestine and bypasses his stomach completely.  The side port goes into his stomach.  All  his food goes into the J tube and most of his medications do as well.  Junior "eats" the same foods you and I eat they just don't get into his body by the same route. For example tonight we had orange chicken with rice, a salad, and steamed veggies.  I ate mine with a fork, Junior's was blended in the blender and he "ate" it through his tube. Not wrong or bad just different.
Here is one of Junior's meals.  The salad part is already in the blender and the chicken and rice will be added. 

  This picture shows Junior's GJ-Tube with connectors attached to it.

 Since food given through the J port bypasses his stomach it must be given much slower.  We use whats called a feeding pump which allows Junior to be fed during most the day at a specific rate of speed(he is on his feeds about 20 hours a day).  There are several different types of pumps and the one Junior has is called a Zevex Enteralite Infinity.  It is very small and lightweight which is perfect for him since it needs to be used so much.  At home it is hooked to an IV pole but when we are out it is in a small back pack hanging from his wheelchair.
Junior's pump.

 

At night the G-port on Junior's tube is also connected to a bag.  It is called a Farrell Valve bag and allows air to escape from his stomach.  With him on the vent while sleeping he often swallows air so this prevents stomach aches or other issues which would arise from having a belly full of air.
The Farrell Valve Bag.

  

Feeling Better

Yesterday Junior seemed to finally be back to his happy self.  This last seizure episode really took it out of him.  I am reminded how blessed we are with amazing doctors, medication, and  his trach.  Pre-trach this type seizure episode would have landed us in the hospital but with the trach Junior remained completely stable and we were able to manage at home. 

After months of hunting for an appropriate jacket for my, not so little dude, we finally found something that works.  Junior is right in between sizes, boys sizes(at least in jackets and some shirts) are getting too snug but mens sizes are way too big.  He fits boys size pants without an issue but because of his back brace and upper body tightness shirts and jackets are more of a challenge. 
This jacket isn't what I had been looking for but it is soft, fleece lined, hooded, and best of all Junior loves it, so we are happy. 
In fact he didn't want to take it off after he tried it on yesterday. 

With Junior's CP his muscles and joints get stiff and it can be difficult to get jackets on him.  For years I have been adapting his jackets to make it easier to get them on and off especially when he is in his wheelchair. By adapting it to open in the back it allows the jacket to be slid on from the front taking away the issue with tight muscles. 
These pics shows the jacket being taken off, sorry I didn't think to take pics until he was already in the jacket.  For putting it on it would just be in reverse with the hood going on first. 

Toys and a movie, a favorite with Junior.

Birthday, Seizure, and More

I realized it has been awhile since I last posted and that would be because things have been just a little bit busy. 

Last weeks Shriner's appointment.  He was giving me the stink eye because he wasn't happy about being there.  He did smile though when he got to pick out the colors for his night time hand splints. 

 Being silly with Abby after getting home.

 Trach change time and what happens when Abby gets the camera.  Junior is such a champ about trach changes now, hard to believe this is the kid who used to go into complete meltdown if he even heard that he needed his trach changed. 

 Goofy guy watching his shows and then getting a ride to his other chair.  We had been talking about his buddy, Shane, who is in heaven so he wanted to wear the Superman socks from Shane. 

 Mr. Happy on Sunday night playing with his toys.  He couldn't decide whether to play with his Spidey or Star Wars toys so decided on both. 

 Monday morning he had a pretty bad seizure so this week has been quiet and he hasn't been up for much.  By the end of the day he had needed multiple doses of his rescue med which meant for a sleepy guy. 

You can tell he is still very sleepy in the pics but he enjoyed Abby's birthday.  Wow, 19 where did time go. 
 
Party time!

 

 

 I have been on the hunt for a jacket for Junior but haven't had much luck.  Where we live it doesn't get really cold so I have looked for lightweight and am finding plenty of smaller jackets but nothing in his size.  Yesterday I finally found something that will work, not what I wanted but Junior is happy with it so it will get us by.  I don't like that it isn't water proof but at least it is warm without being too heavy. It is hooded and fleece lined and I opened the back like I do on all his jackets so he can get it on easily in his chair.