More Clouds

We had planned to head out for a nice long walk today but clouds again moved in so we stayed indoors. Junior didn't mind too much and enjoyed standing by the window and looking outside.

Playing a game, Junior loves to do puzzles and play games while on his wedge.

Appointments and More Appointments

Today has been a long day of appointments. Actually it started late yesterday afternoon with a last minute trip to the pediatrician because Junior's ear is bleeding. She was baffled with it and called the ENT who was already out of the office for the day but told her to prescribe us antibiotic drops. We will see the ENT later this week to try and figure out whats up. Poor guy, ear pain is the worst.
Today we saw the pulmo first thing and though his lungs are noisy(actually we are concerned when they aren't noisy) he is moving air and his sats are good. We will now try to finish weaning the prednisone and let his system get back to normal.
Then it was off to the eye doctor(neuro-opthalmologist) to be sure Junior's glasses were just right. He was pleased and could already see a difference in Junior's ability to keep his eyes focused for longer without so much battle. He told us to keep him in the glasses as much as possible.
Lastly we saw the cardiologist. I had been concerned because over the past little while Junior has had periods where his heart rate is significantly lower then his norm. An EKG showed normal rythm and no problems, the doctor told me everything looks great so he is not concerned about the change in rate. We did come home with a 24hr holter monitor so the doctor can see what is going on and when(more for my own piece of mind). It was nice to come home with one less thing to worry about.
Junior and all his wires
Junior is one worn out guy this evening and only wanted his movies while having treatments and during stander time.
Watching Transformers 2 during postural drainage time. He really liked it but there were a few spots where he was looking very worried and wanted me to watch it with him.
Enjoying some cartoons while in his stander.
This is from yesterday, he was enjoying looking out the window during stander time.
Got to love his little chubby fingers

Sleep

Sorry to not post much the past week but I am having a bout with insomnia. About twice a year I have a week or longer where I just can't sleep at night no matter how exhausted I am. Napping is the same, I lay down and suddenly am wide awake. Uggghhhh, no fun at all. It is one thing when Junior is ill and I have to be awake but when it is just because I can't get to sleep it drives me crazy. So at the moment I am in a bit of a fog and praying tonight will break the sequence and get us back to the normal pattern. I am going to do a good exercise session this evening and sometimes that helps.
Junior is actually doing pretty well, a bit of asthma today because it is clouding up but nothing major. He is being such a good sport about my being so tired and thinks it is great to get to watch extra movies. I am blessed that he is such a sweet, laid back, and good natured little guy. His only demand today was that I sit in his recliner with him for a movie and story.
Hope everyone has a wonderful week.

New Glasses

Junior had a chance to try out his glasses for quite awhile today and he loves them. In fact he demanded they be left on even during treatment time.

Treatment time with his glasses on, goofy guy
Watching TV with Abigail
Just goofing around

It has been a few days since my last post. Junior is doing good aside from some asthma today as a huge storm moved in. The asthma has now passed but the storm is still going strong. The wind has caused the window seal in my livingroom to come loose and now I have a pretty bad leak. Maintenance tried to fix it but nothing will hold because the storm is so bad. I am busy going through stacks of towels and hoping the rain stops tomorrow long enough for them to get this fixed.
No bike rides because of the weather but Junior has enjoyed lots of stander time and also bouncing on his therapy ball while watching tv.
He is really on a reading kick lately and we have to read for awhile every day or he gets very upset. We have nearly finished the entire boxcar series as well as most of the Magic Tree House series and I think we will give the Hardy Boys a try next. I am loving it and it is so much fun to read him all the stories I remember as a kid(well not Magic Tree House but boxcar children and hardy boys).

Here Junior is playing with his cars and ninja turtles while in his stander. He was deep in conversation with the turtle.
Giggling at his movie during postural drainage, this boy loves his action movies and was watching Transformers. His friend brought him the spidey pjs on Monday and he loves them. He decided today was a pj day and wanted them on all day. He was very happy when I agreed and let him stay in them all day.

Turtle Time

Junior hanging out in his stander playing with his Ninja Turtles. With the weather changing he couldn't go outside but still enjoyed playing by the window.

I am sure everyone has noticed the spot on the bridge of Junior's nose. He has a pressure sore from his bipap mask. He has a wonderful new gel mask now and is only needing his bipap at night (for the most part) but the spot was already there when the new mask arrived and we are having a hard time getting it to heal(if we can just get it healed the new mask won't break it down again). With the new mask being bendable we are doing our best to keep it totally off the spot at night but these things take soooo long to heal. Has anyone else dealt with a pressure sore? Any great ideas for getting them to heal(this is a first ever for Junior and hopefully the last he will ever have)? We are going to try a mask that just goes over his mouth but not sure how well that will work for Junior.

A little story I just have to share. This morning Junior slept in late so I was in a hurry getting him up. I told him his lift takes too long so I would just lift him into his chair this time. Little stinker looks at me with a very clear NO eye gaze and starts hollering aahh-aww(Junior for grandma). He wanted his lift and wanted to call grandma to "tell" on me for not using it.

Mickey Mouse Pumpkin

Junior's teacher took these pics on her phone today while we were decorating Junior's pumpkin(thats why the pics are a little fuzzy). If Junior looks a bit tired in the pumpkin pictures it is because he had just gotten back from a bike ride.
He loves his Mickey Mouse pumpkin.
A few more pics from our pumpkin time.
Junior is checking that pumpkin out very closely
Chatting with pumpkin Mickey
Now showing off his pumpkin

Relaxing and watching tv, Junior loves laying on his tummy if we use his boppy pillow(just don't tell him it is actually neck exercise time)

We even got a bike ride in today. The weather was gorgeous and no wind.
Ready to head out the door
Getting off his bike with the lift, this boy loves his lift.

School With Teacher Cindee

A few pictures from Junior's school session yesterday with teacher Cindee. He was doing so good and very focused. I am always amazed at his reading comprehension skills, he has symbol cards with questions from the stories and always gets 100% correct even with new stories.
Tuesday night Junior's bipap machine started acting up. The sensor was not picking up his breaths and kicking in to provide the support during apnea episodes. Thankfully our provider was able to get a new one asap so we could run pick it up.
Here is Junior all ready to go yesterday afternoon.

PICTURES

Not sure what has been up with blogger but finally a few pictures from the past few days. You will notice long sleeves in several pics, it has started cooling down and Junior gets cold hands and feet as soon as fall starts.
Watching tv Sunday afternoon. The little thing around his neck is his personal air purifier.

Goofing around during tx time on Monday
Playing with doggy
Treatment time today
Junior had his GJ button replaced today and did great. We had it done without anesthesia and he didn't even so much as flinch. I spoke to the nurse at Shriners today and since Junior's foot is doing better we will hold off on going in. She said from the sounds of it he likely just stretched a muscle too much and it will take a few more days for him to be comfortable standing and riding his bike again.
We have been weaning Junior's diazepam(used for spasticity) for the past several weeks and recently he has had a few partial seizures as well as being very emotional and quick to startle.
I spoke to the neurologist today and because of the airway we want to continue to wean the diazepam but will try using a med called zanaflex while doing so. A new one for us so would love to hear from anyone who has used it with their child.
So far a quiet week, I am still tired and trying to get over this bug. I am lots better just dragging a bit. Junior has been very happy to enjoy some extra movie and play time and not having to do school work. The little goof decided to stay up nearly allllll night last night. No issues just didn't feel like sleeping. Today he has been sleepy all day and I have let him nap but tomorrow I am going to do my best to keep him awake and get him back on a regular sleep schedule.

We are having a nice relaxing Sunday. I am on the mend and Junior's asthma is calming down(a bad 24 hours for him).
He slept much better last night and is back to his base line oxygen need. On Friday afternoon I was putting his AFO's(ankle braces) on him and he stiffened his foot right as I was pushing the brace on. I have no idea what/how he hurt his foot but cries when it gets messed with. No swelling and I can rotate it without a problem, it is the weight bearing and upward pressure that hurts him.
We will see how it is tomorrow and if it isn't feeling better I will give Shriners a call and get it checked out. There is always some concern because he is nonmobile and his bones are not as strong as ours are. I can't imagine at the angle he pushed at that, there could possibly be anything broken but it concerns me none the less.

Aside from his sore foot Junior is a happy dude today and even wanted to hang out on his tummy while watching tv. I am praying the weather will behave and go through no major changes for awhile.

Not sure what is up with blogger but it would not let me download any pics today. I will try again later.

KIDZ

Please head on over and check out the Kidz site. I will be blogging there occasionally along with a group of wonderful ladies.
Tara is always posting great things, everything from inspirational stories to craft ideas.

Today we got up early and got started on our day. After some stretching and fun on the therapy ball it was time for school. We went through the typical school stuff and then since today is the first day of October we learned about fall. Today we mainly discussed different kinds of leaves/trees and what happens to the leaves in the fall.
Here is the very goofy kid during school, he thought it was just hysterical to refuse to look at the camera.
A quick break for treatment time(well treatment time takes over an hour so not so quick), then off for a bike ride.

Ready to ride, that blue cloth you see is his lift sling, we have learned that though it may look a little strange it is sooooo much easier to just leave it there during the ride(Junior doesn't mind and it saves us several minutes)

I have been feeling off the past couple days, couldn't put my finger on it but was just really "down" which isn't at all me. Tonight I found out why, I started getting chills and had a fever. UGHHHH, I sure don't want Junior catching anything. I am wearing a mask and keeping things super clean but with our small place I am sure the germs are still getting to him. Please pray that he stays well and I have something minor and not the flu which is going around here.