Winter Tree

Junior loves the Christmas tree and is always so disappointed to see it taken down.  About four years ago we left it up and just changed the theme every month or so.  With Junior and his equipment being bigger there has just been no room to leave up the tree since then.  This year I decided that though there is no room for the tree in our livingroom to remain up the one in his room is on a shelf and not taking up much space.  So yesterday when I was taking down all the other Christmas stuff I took off the Christmas ornaments and replaced them with snowflakes.  Junior now has a winter tree and is overjoyed that the tree is staying up. 

I was also hanging the Christmas cards around the top of his room and managed to trip(while climbing onto the stool).  I survived the fall with only a small scrape but hit the leg of the iv pole so have a large bruise on the bottom of my foot.  It makes walking a bit painful but I am so very thankful it wasn't worse.  I had planned to clean out Junior's closet and give his room a scrub down but that may have to wait a couple days.   Instead time to hangout with the dude and enjoy the day, I sure can't complain about that. 
Happy New Year everyone, be safe, and God's richest blessing on you all. 

Our Week

Wednesday I had realized that Junior had gone over a month without a seizure, something that hadn't happened in a very long time.  Thursday morning that changed when he had not one but two seizures and then slept most the day. 
Seizures stink and this is how things go after a seizure.  Bipap, vest, neb, and plenty of oxygen.  It usually takes at least 24 hours for him to recover after one of these seizures.  

 Friday we had a very nice visit with a sweet friend which I had not seen in about 10 years.  So neat to catch up on life as well as meet her husband and kids. 

Today Junior is doing well and has fully recovered from his seizures.  He decided that it was a sleepy Sunday though and just wanted to relax.  He asked for his solar system and the tv(he likes to listen to a favorite show while hanging out in his solar system). 

A Very Happy Kid

The weather cleared up and Junior's asthma did to.  He was so happy to be able to breathe well and it put him in a fantastic mood.  Loved seeing him back to his happy, giggly self.  He still isn't back up to speed energy wise so we didn't do any big activities but he wanted to do a puzzle and play a game. 

First he did his Angry Birds puzzle.  He is quite good at puzzles though doing them from his recliner made it a bit more challenging.  It is harder for me to see what he is looking at and show him the pieces.  I ended up pointing out the spot we needed a piece for and then showing him some pieces so he could show me(with his eye gaze) the one he thought fit.  When up in his stander the board can be better positioned and he can look at the area he wants to put a piece and then at the pieces which I line up on the board. 

Then time for a game.  Junior decided on super hero memory.  Again a bit more challenging from his recliner but we made it work.  He looks at the area he wants to choose  from and I then point to each specific card in the area and he tells me yes or no with his eye gaze. 

There is a story behind this picture.  We were nearing the end of the game and it was my turn.  I chose my first card but couldn't remember where the match was.  I looked over at Junior and he was intently looking at a card.  I chose it and it was indeed the match.  I teased him about helping me and he burst out laughing and thought it was just soooo funny.  He still won, he may have helped with one match but he is super competitive when it comes to games. 

 Trying to watch tv during exercise time

 

 Getting a closer look at his helicopter, treatment time so we will take it on a test flight later. 

There is an episode of the Brady Bunch that Junior thinks is hysterical, he has watched it several times so starts giggling when he knows a funny part is coming up. 

Christmas Afternoon

More of our Christmas day. 

Junior loves cameras so he was super excited when he opened this gift from his parents and brothers.  It can attach to his hat and he can take video with it as well as photos. (thank you mom, dad, and brothers, I love my new camera)

playing with his switch adapted light saber, thank you aunty Carol.
 
Christmas giggles

 Spider-man yeah, Junior hung onto this movie all evening and didn't let it go until he fell asleep.  We haven't seen this new one so I sure hope its good.  This boy is such a huge spidey fan and has been since he was about 6. 

 

 I think he is a little excited about his ipad controlled helicopter.  Can't wait to give it a try with him.  Funny because I talked to my mom and my brother (David, the older of my two brothers who is a firefighter) also got one of these for Christmas.  I told Junior that and he was quite impressed and now thinks he got a really big guy toy for Christmas. 

 

Time to relax and watch a movie
 

We are headed to bed after a very nice Christmas day.  We are both feeling better, tired but on the mend. 

Christmas Morning

Merry Christmas, hope everyone has a blessed day and remembers the true meaning for this season. 

Junior was awake early and couldn't wait to get up and get into his gifts.  He started with his stocking while still in bed and then had treatments.

 While he was having treatments I got his ipad ready for the gift opening.  He had a board so he could tell me when he wanted to open another gift, if he needed help getting the gift out of the package, and also thank you and that he likes his gift. Though each symbol box has just a word or two in the picture when he chooses it, it will say a complete sentence(I want to open another gift please, please help me take the gift out of the box, etc.)

In his new lounge wear and ready for his gifts


The Christmas tree was all ready for him with his new switch adapted nerf gun set up.  I also made him a bullseye to go along with it.

Checking out his nerf gun this morning, we of course had to stop and give it a try before opening any other gifts.  Junior loves to open gifts but he also loves to make it take all day.  He likes to not only unwrap but also open each item and look at it/play with it before moving on.  I think its great because it makes the fun last so much longer. 

Junior loves the calls he gets from family on Christmas and he got several throughout today.

  

Using his ipad

Thank you teacher Cindee, my gift is super cool and I can't wait until Heidi gets it adapted so I can play with it all by myself.

Not sure if you can see the bubble in the pic but he is saying "please help me get the gift out of the box". 

 one more of him using the ipad during the gift opening.

  

Thank you uncle David, I love action movies and I haven't seen this one yet. 

Junior got worn out and was needing a rest by the time he opened his weighted blanket.  This was partly from me and partly from grandma and papa, thank you, he has already used it and it is so nice to now have a weighted blanket that fits him.

 

Right before getting him out of his chair and into his recliner to relax we opened one more gift.  It was a huge wall sticker.  This thing is so cool and I think I was as excited to see it as he was.  I loved his face when we were putting it up, that totally amazed look.  He just kept looking at it with a grin on his face.  This afternoon he couldn't wait to get on the phone and tell grandma all about it.  

It was then time to move to the recliner for a quick break before finishing gifts.  I will be doing another post tomorrow with the rest of the pictures and fun. 

Christmas Eve

We had a very quiet Christmas eve.  We are still trying to recover from being sick so neither of us had much energy. 

This pic is from Sunday.  Junior was needing some extra bipap time but sure wasn't going to let it stop him from having some Christmas fun. 
 
I put on Arthur Christmas for Junior to watch but he preferred napping.


On Christmas eve we read the Christmas story then opened the last window on his ipad advent calendar.  After reading a couple more of his favorite Christmas stories it was time for Junior to open his Christmas even gift.  It is always new pajamas or lounge wear.  This year it was Angry Birds lounge pants and an Angry Birds t-shirt. He was very tired and not his smiley self but he definitely liked them.  A very big Angry Birds fan. 

Silly Faces

Abigail and Junior were being very goofy yesterday and making silly faces. 

We have lots of wind and rain which is causing Junior some asthma troubles but so far nothing too severe. I managed to pick up the bug going around and had fever and aches last night.  Not quite as bad today and at least no more fever.  Junior is being a champ and knows I don't feel good so is being very patient.  Time for some Christmas movies and relaxing.  

Christmas Time Fun

The weather change has made for some rough moments the past two days but Junior has also had some very good moments.  In between naps and treatments we made yet more ornaments and the kids had a ball decorating the gingerbread house.  Christmas music, Christmas movies, and a whole lot of silliness was going on as well. 

Silly Faces


Gingerbread house fun

 Making ornaments

We are having lots of rain and it is supposed to stick around through Christmas.  If it will stay and the weather doesn't keep changing then Junior should feel much better.  

Have a very blessed Christmas and don't forget the real reason for this season. 

Much, Much Better

Junior is doing so much better and I am praying hard that the rain moving in doesn't cause a setback.
He is still sleeping quite a bit as he recovers but that is a good thing. 

a little smile yesterday while watching a movie

Yesterday morning I told Junior I was going to pick him up and he immediately lifted his arm to "help".  I was so surprised by this and so very excited to see it.  It is not easy for Junior to move his arms so this is a very big deal for him, especially his moving it so quickly. 

Making a new ornament for his tree.  Junior loves putting things on his tree so we make a lot of ornaments during Christmas.  

I was very disappointed when I went to the picture program I have been using for awhile and discovered that it is now a pay website.  Parts are still free but most of the things I use so often they now charge a monthly fee for.  So no more picmonkey for me and I am trying out a new(free) site called ipiccy.  So far I am liking it and enjoying playing with the photo edits and collages. 

 Watching A Charlie Brown Christmas on his ipad.  A very cool app and even I enjoyed watching it and playing with all the extras.

  

Junior relaxing with his solar system and some Christmas music while he has his Tobi treatment.

  
Please pray that Junior continues to do well and the rain doesn't cause a relapse.  So many fun Christmas things that we are wanting to do.  I hope everyone is having a healthy and happy holiday season. 

Here We Go Again

Yesterday Junior got quite cold and  I hoped it was from the weather, in winter Junior can have times when his internal temp control does its own thing.  It can be a signal though that a fever is imminent so I took his temp about every half hour all day.  He came back up to normal and aside from a bit of extra coughing seemed okay.  Early this morning his alarms went off and though his oxygen levels were perfect his heart rate was very high.  Yep, the fever had arrived.  
Fever meds and some extra treatments dealt with things and he has been sleeping much of the day. 
A chat with the pulmo and it seems he has a relapse of his resp virus.  We will keep doing extra treatments and keeping a very close eye on things and hopefully he will be feeling better in a few days.  
Please keep Junior in your prayers.

Yesterday when Junior was cold and all bundled up.  He thought it was very funny to be wearing his hat inside.

Early Christmas

Abigail won't be here for Christmas so she came over this morning for a little  early Christmas fun.
Junior thought it was great to get to open some gifts and was quite excited when we told him they were big kid gifts. 
Looking so grown up in his new sweater, Abigail was very pleased that he loved the sweaters she got him.

 

 A little goofing around

 Abigail with one of her gifts, we always get her something with I Love Lucy on it. 

 

Junior continues to improve and if this weather would give him a break I think he would fully get over this bug.  He was again able to go several hours this morning without oxygen so hopefully by Christmas he will be off it most the day.
So happy to see those big smiles of his back and even have him telling me off about things.  That attitude lets me know he is most definitely feeling better. 
Lots of fun activities planned for this coming week so I am praying hard that he will continue to feel better.

Tonight Junior helped me finish a weighted blanket and matching foot pocket for a special little friend.  It is a surprise so I can't share who it is for.  We can't wait to take it to her though.  This is the smallest weighted blanket I have made and is much, much smaller then it looks in the pic.  It is about 4 lbs in weight.