Happy Thanksgiving

Happy Thanksgiving Everyone.  We have so much to be thankful for and are truly blessed.
Junior is having a tough day and I suspect he is fighting something.  Lots of coughing and not many smiles.  He did smile when I was getting him ready for treatment time.  He knew it would help him feel better.

Junior got a very special Thanksgiving surprise when we face timed with my parents and a man in their church sang him the song my mom wrote for him several years ago.
I am going to try to upload the file here but not sure if I can share an mp3 file on here.
Here is a picture and if you click it, it should enlarge so you can read the words.

 

well it is not letting me share the mp3 file so I will see if I can find someone who knows how to go about converting it so I can add it later.
Okay a friend helped me with this and here is Junior's song.

  

This evening Junior woke up feeling a bit better so I let him open his "holiday box".  It has things for him to use over the month leading up to Christmas(things like an ornament for the tree, christmas socks, movie, and some christmas feeding tube and trach pads as well as covers for his vent hoses). 

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 Christmas covers for his vent hoses now even his equipment is ready for Christmas.

Weather Changes

Junior is recovering from his cold and doing better but now is being hit by asthma as the storms roll in.  A reminder of how thankful we are for his trach.  Though the asthma is a struggle it is manageable with the trach.  Before the trach we would be in crisis mode at this point and just trying to make it through each day. 
Junior is low on energy and needing a bit of oxygen and some extra vent time but still wants to play, watch his shows, and we even snuck in a little school work.  Being able to use his vent through the trach is so nice and allows him to do other things while on his machine.

Earlier in the week being silly during treatment time
  
I Love Lucy during some asthma troubles yesterday
 
Junior didn't have the energy to sit at his big sensory table but still wanted to play so we used his tilt tray and inflatable sensory bin.  There are cars and super heroes under all the balls and he loves pushing his hands in to find them.
 
Enjoying some stories at the end of his school session.  He loves these stories that he stars in, so much fun. The ipad is hooked up to the apple box so he can see it on the tv while I read him the story. 


Keeping my parents in our prayers as they prepare to say goodbye to their sweet puppy.  Rinny is 17 years old and definitely part of the family.  So hard to say goodbye.  The two pictures with Junior are from our first visit to NC when Junior was just 7(we have visited a few other times as well).  Junior and Rinny were quite the buddies and Junior even came home and named his bear Rinny.  The picture with my dad is from a few days ago.  

Not Feeling Well

It has been awhile since my last post.  The computer crashed on us and I have just been able to get something functional again.  Wow didn't realize how much we depended on this technology until it was gone.  Thankfully I had realized the computer was on its last leg and since I didn't have a memory stick I had emailed all important files to myself.  Not the most efficient way to get things backed up but in an emergency it worked. 

Junior seems to have a cold along with asthma issues from the changing weather.  He has been very cranky/moody with even the smallest things causing him to burst into tears.  Lots of extra treatments and vent time along with naps and I Love Lucy shows are on the agenda.

Here he is telling me his chest hurts.

 And the little smile when he knows I understand whats wrong.

Watching I Love Lucy.  I had told him it was stander time and he burst into tears and wanted his ipad.  He then told me "I need help, I hurt, my head hurts, I want to relax, I want to sit in my recliner, I want an old show, I want to watch I Love Lucy".  Of course once in his recliner he was all smiles and knew he had pulled one over on me.  Usually I wouldn't have let him get away with it but it was Sunday and I could tell he really wasn't feeling good.

 Someone wasn't ready to go to sleep. 

I had mentioned in my last post that he was going to the hospital to have his tube changed.  He had that done last week and it went okay.  We had talked about it a lot ahead of time because I knew he may have a hard time.  He usually does great(even grins and "chats" with the doctor during the procedure)but this was his first hospital visit since surgery.  He did great up until he was on the table in radiology and the doctor put on the hospital mask and gloves to change the tube.  I took one look at Junior's face and knew he was headed to full melt down.  Poor kid must have had a little flash back to surgery time when he saw those masks because he went into a panic/anxiety attack.  Crying, shaking, hyperventilating, the whole nine yards.  I talked to him and they made very quick work of the tube replacement.  I got him back in his chair quickly and out the door, by the time he got in the car he was calmed down.  In fact by the time we hit the Elk Grove exit on the way home he was laughing and demanding requesting a Dr. Pepper.  That is his typical reward after a tube change, he only gets a few tastes but to him he thinks it is the most wonderful thing possible. 

Please pray that this cold will leave very quickly so he can feel better. 

Also please keep Junior's buddy Shane in your prayers.  He has been in the hospital over a week now and is struggling.  These boys met just before Junior turned six and have been buddies ever since. 

Staying Awake

Since Junior's trach surgery back in August he has not been sleeping well at night.  He sleeps a few hours then stays awake the remainder of the night and wants to sleep his day away(will sleep from 10 or 11pm until 2am then awake until 7-8am).  I didn't want to push it during his recovery then he was having his asthma issues so again not a good idea to really push him.

This week it is finally time to get back on track.  This means waking him up in the morning at his normal treatment time and making him stay awake until bedtime(a cat nap in there is fine but no hours of napping).
To say he was not happy about this is a huge understatement.  I know I have to stay strong and not let that face get to me but wow is it hard.  He knows his sad face melts me and was using it today.

During stander time we played with foam and tried to keep him very busy and distracted.  He is a bit upset with me over all this so was doing his best not to smile but coudn't help sharing a few small smiles. 

 By early afternoon we got passed the overtired crankiness and moved to the giggles stage.  Everything was super funny.

 He was learning about spiders in his school session today so we ended by making a spider.  He thought it was great and was being a very silly guy. 

Then still working on keeping him busy so he won't fall asleep so he did a little coloring with his markers.  He is pushing back hard in his recliner because he is trying to get his arms to move the markers. He doesn't have any small motor motion in his hands but can stiffen his arms to move his hands and color.

He is now taking a break and watching Walker Texas Ranger while playing with his sensory board.  I am keeping a close eye on him to be sure he isn't falling asleep and so far the high action show is keeping him entertained and awake.
Only a few more hours until bed time, we may actually make it. Hopefully it won't take long to get him back into his regular sleep routine.

Relaxing Sunday

We had a nice relaxing Sunday.  Junior started off with some tears and complaints that his head and chest hurt but allergy meds took care of it.
He wanted to watch I Love Lucy much of the day but then we switched to music while he worked on a craft.  He loves doing these 3D flowers so we used fall colors and stickers to make them fit the season.   Junior likes to decorate each layer and then put them together(paper plate,large coffee filter, small coffee filter, large, med, and small cup cake holders)

  
Each year during November Junior has a thankful pumpkin.  Each day he picks something he is thankful for and we write it on the pumpkin and he also adds a sticker.  It has become a favorite tradition and we even have a board on his ipad communication program which is programed with lots of "thankful" choices.  This is from yesterday and he was thankful for the rain.  I don't have a picture from today but after a rough start and his trach helping him get the gunk out he chose his trach to add to the pumpkin.