Snow

Snow is not something we see where we live and one of these days I hope to take Junior to experience the real thing.
He absolutely loves to play in the insta snow so today at the end of his school we made some snow then talked about snow and cold weather. He was using his ipad to answer questions about snow. He kept giving me a funny look when we talked about it being cold, his snow is not cold.

Amazing that such a small amount of the insta snow powder grew to this amount when we added the water.
Answering a question about his snow
After playing in the snow I asked what he wanted to do next. Since he had done a good job during school and not complained we had more time then usual before his treatments.
Junior decided he wanted to draw on the window with his window markers.
We used some stencils to draw Christmas things. Kind of hard to see in the pics but he wanted Christmas trees, snow flakes, and a gingerbread man.
Junior was in quite a goofy mood today and every time I asked him something he would respond with "maybe"(ipad). He then thought he was just so funny and would break out in giggles.

All that activity wore him out
It has been very windy today so poor Junior is dealing with lots of coughing. He got through the morning without oxygen but has been on it most the afternoon and evening. So much gunk. Amazes me how he can take it all in stride and still be his happy self in the midst of all that coughing. A few times he would holler "ooooffff, oooooffff"(cough, cough) meaning he is getting ready to cough and wants to make sure I am there with the suction. As soon as he coughs and we suction he is back to smiling and playing. My little champ, making the most out of every moment. Don't you wish everyone had his attitude about life.

Junior's Tree

One of the highlights of Junior's Christmas each year is decorating his mini tree and putting it by his bed.

Ready to decorate
Come on put down the camera and lets put on the ornaments
Time to put on Spidey
is it in the right spot
Almost finished

I love my tree
Junior is more tired then usual, coughing a lot, and needing some oxygen in the evenings but otherwise one happy dude. He was laughing and chatting away while decorating the tree. I think he is on the mend.

Decorating for Christmas

The plan had been to pull out the Christmas tree and decorations on Friday. Thursday night I started having body aches and congestion and by Friday was feeling pretty miserable. I managed to get the Christmas boxes out of the garage but they sat in the middle of the living room the past two days.
Today I was feeling much better and Junior was very excited to see the decorations finally going up. Space is limited so we have a tiny tree but Junior doesn't mind one bit.

Mr. goofy in the middle of the decorating
The door going into his bedroom. With such a tiny tree we needed a place for the many Christmas things Junior has made over the years. Our door frames are metal so we just put magnets on the backs of everything(that is not everything, I will be adding to the other side of the door as well).
Relaxing with his movie after the decorating fun
Tomorrow Junior will decorate his mini tree which goes beside his bed(one of his very favorite Christmas activities).
Please say a little prayer for him tonight. I am concerned that he may be coming down with whatever bug I had. Tonight his coughing and secretions have increased and he is needing some extra oxygen. What for me means a couple days feeling miserable could be a lengthy illness for Junior. Sure don't want him to start the Christmas season off sick.

A friend posted the link for the Portable North Pole today on face book and I jumped on over to get a Santa video for Junior. He loved it and it was so cool(these are free). For those on our face book friends list I have Junior's video from Santa posted there.

Happy Thanksgiving

Happy Thanksgiving everyone.

We had a lovely day relaxing and enjoying the day. Mellisa(my sis) came over for several hours and we had a nice dinner. We didn't fix a huge meal but it was perfect for us and Junior had his very first Thanksgiving dinner ever. He even had some pumpkin pie(he just had the pumpkin).

Junior with his dinner before it gets put in the blender(there is ham on the plate but he is actually having chicken). Chicken, veggie casserole, garlic mashed potatoes, pineapple banana salad, and pumpkin pie.
Dinner is served
The weather has been yucky today so Junior has been tired but still in a great mood. This evening he wanted to play the wii so he played right from the recliner.
Baseball time
put that camera down and lets play ball
Yeah I hit a home run

Junior's First Thanksgiving

Abigail told me today that "it is going to be Junior's first Thanksgiving", she then explained what she meant. It is his first Thanksgiving that he will get to actually "eat" Thanksgiving dinner. She is right and it is so exciting. I don't care that the dinner is going through his tube, it is his first real Thanksgiving dinner. One more thing that we are oh so very thankful for. We are truly blessed.
Happy Thanksgiving everyone.

Snuggle Time

The last couple days have been crazy busy and we spent most of both days in Sacramento at appointments. Tonight Junior is snuggled up watching Charlie and the Chocolate Factory.
His feet got cold so we put his foot pocket on(the blanket is only folded up for the picture so you can see the foot pocket), his hands rarely get cold but his poor feet can get so cold. In winter he even wears his foot pocket over his braces and shoes while we are out.
Yesterday started with a visit to Shriners. Junior got spinal xrays and then we saw the doctor.
I was a bit worried when I saw his scoliosis curve in the xray but then the doctor pulled up his 2008 xrays and they are exactly the same. A huge relief to know the scoli has not progressed. His kyphosis appears to have progressed some so we went back for more xrays, this time in his back brace. This will let us see whether the kyphosis is flexible or fixed. If the xray looks significantly better with the brace on then we know it is flexible and bracing is working as it should. We will see the spine team in January so that we know all the available options in dealing with this.
The Shriners appointment took up most of the day and then we headed to the GI doctor. She was thrilled with how Junior is doing on the blended diet and he has gained about a pound. He is exactly the right weight for his height. They want him to stay on the slim healthy side because of his lung issues. Junior's friend Michelle had a GI appointment just a few minutes before ours so it was so much fun to get to visit with them while we waited.
Today Junior had therapy. We have changed our schedule so he only goes every other week but his sessions are longer. Today was his first long session and he did really well. He did his stretches and exercise then rode the therapy bike and walked on the treadmill. I have one exhausted kid tonight.

A Little Sunshine and Shopping

We woke up to sunshine this morning and decided to take advantage of it and let Junior do a little Christmas shopping. I try to take him out so he can pick out his own gifts for others but we have to do it before Thanksgiving so the stores aren't so busy. This was his last fun store outing until winter is over and he had a ball. I can't say what he picked out since he was shopping for Abby and Mellisa and they read his blog. I will say that one involves him needing to use the sewing machine and he can't wait. He was so funny trying to pick out what he wanted. He looked at everything and kept telling me no. Then I saw his face light up and he started to holler and giggle. I asked if thats what he wanted for Mellisa and he told me "yaaa". Quite the shopper, what he chose is so very Mellisa(same with Abby). The rest of our shopping will have to take place online.
We were only able to stay out for about an hour because the clouds started to move back in but it was worth it. Junior had so much fun.
Here he is hanging out on his tummy watching tv this evening.
Giggling at me

Grandma Face

When Junior is upset he has the most pitiful face and we call it his grandma face. When he was younger he quickly learned that showing grandma this face could get him whatever he wanted.
Today he was having a sinus headache from the changing weather. Isn't this the saddest face, just breaks my heart to see him upset like this.
This evening Junior was feeling much better and loved having Abigail come over.
They watched tv and then made a birthday card for Carol.
Sleepy, happy boy
The little note Abigail left on Junior's hand

Aside from the headache Junior has had a pretty good day. The crazy weather made him sleepy but he was still full of smiles and giggles.

Ready to Ride

This morning Junior was complaining of a headache. He is my little weatherman and when his headaches start we know we will see the weather changing in the next 24 hours. Even with his headache he decided he HAD to go for a bike ride.
How can you say no to this face
He was being so silly while I got him loaded on his bike and kept giggling at me.
The grouchy look when he wants me to put the camera down so he can ride
Rolling in the door after his ride, I had told him he could relax and watch a little tv before school.
Nothing like a bike ride to start the day.

Yesterday we heard back from the neuro office and Junior's depakote levels are indeed high. He is going for more labs this week. Sodium is down a bit more which is not good. Hoping the endo labs will come back soon with some answers. I am keeping a very close eye on him for seizure activity with his sodium being so low.

School Work

With Junior's health issues lately school has taken a back seat. Today it was time to attempt to get back on his regular schedule. Of course the day had to start with a seizure but Junior recovered quickly and we went ahead with school work.
Bible time, he is answering catechism questions
Time for reading
Doing the work but not exactly excited about it. I need to get his new readers enlarged and laminated. I think these are just boring for him. He had no problem matching the correct picture to the sentence and acted like it was horribly boring.
The smile when I tell him it is his last sentence
I asked if he was ready for math and he told me "NO"
Moved over to the the ipad for some math and suddenly he decided he was ready to focus and work.
We hadn't done a lot with measurement so I wanted to make sure he understood the concept before we went further in our math curriculum. I pulled up the measurement app and then just touched the answer he gave me(the app read the question to him). He didn't miss one so he is most definitely ready to move on to the next thing.
Which thing is heavier

We didn't do a long session but it was a good start. I pray that his seizures stay away and the weather behaves so he will feel good and be able to have some great school days before the holidays.