Sometimes You Just Need to go Outside

This morning Junior was very crabby and I could tell he wanted something and it wasn't his toys, movies, or a story. He wanted to get on his bike. I cleared out an area to ride back and forth across the room but that was sure not what he had in mind. He wanted to go outside in the worst way. It was nice out so I put him in his mask attached his oxygen to the back of his bike and off we went.
Since then Junior has been a very happy guy, he was just missing his bike rides and being outdoors. His lungs are sooooo very sensitive to everything and getting outside lately just hasn't been an option. Hopefully we can get a few more bike rides in before the cold weather moves in.
All ready to go
Getting home from the ride, he didn't seem to mind the mask.
Waiting on the lift to lower, Junior loves his ride
This is from yesterday. We made an ocean music shaker.
Happy dreams
Treatment time

Thank You

I have to say a huge thank you to all our blog readers who shared their great ideas. You guys are amazing and had such wonderful suggestions.
I am now working on putting together a "treatment activity" communication board(love boardmaker) for Junior so he can choose what he wants to do. The activities will be things that he can only do during treatment time. I think it will really help him look at this as a fun time and something to look forward to and not dread.

My sis came over to hang out with the dude this afternoon and Abigail and I went to visit our brand new Kohls store(opened yesterday). I am in trouble now, this store is right down the street from us and along with the clothes has lots of neat stuff for Junior. I was good though and only got him a book and a cool little machine that projects pictures on the ceiling and plays music and other sounds(thanks for that idea Trina, perfect distraction for treatment time).

Junior had a great morning and was even off oxygen for a little while. This afternoon and evening the weather started doing its thing and Junior's asthma kicked in but so far just some extra congestion. Praying for a good night and unchanging weather tomorrow. It can rain or be icky but just no more drastic changes.

Need Ideas

Okay all my wonderful blog readers I am needing ideas to help make treatment time a little more fun. During the vest and nebs Junior can watch t.v. but during the half hour hand percussion part(4 times a day) he gets bored and unhappy. It has gotten to the point where he starts crying or complaining the minute it is time to start that part. Television is not a good option because he has to be positioned multiple ways to get to each area of the lung so can't always see it and then really gets upset. I thought about a book but I can't read and do the percussion at the same time.
I need something he likes that will keep him distracted but can easily be moved so he can see it.
I don't want treatment time to be miserable for him, he has to have them too often, I have to find a way to make them fun. I am trying to come up with several things that he only gets to do during those times so he will be excited to choose his treatment activity.

No post is complete without a giant Junior smile, here he is goofing around during exercise time.

Junior is doing much better and now is just dealing with some prednisone tummy pains.

our week

It has been a few days since my last post so here is a quick update.
Junior's asthma has been flaring up pretty bad the past couple days so I am keeping those treatments going and praying we can keep it from turning into anything more.
At this point his sats are up and down a bit but he is moving air and doing pretty good clearing secretions. I gave him some prednisone yesterday evening and that helped with his wheezing and tightness.
Junior is a little cranky and gets mad at me for waking him up or interrupting his movie(story, playtime) for a treatment. Overall though he is still his happy self with plenty of smiles and giggles.

He saw the nutritionist yesterday and was up a couple more pounds with nearly no height increase. We cut calories again because a chunky face and neck(thats where Junior gains first) are not going to help with his airway and lung issues.
Poor Junior, he totally freaked out when we pulled into the parking lot to see the nutritionist. The building uses the same parking lot as the hospital and thats where he thought we were headed.

Thank you to everyone for the prayers for my brother in law. He ended up in the hospital a couple more days then they had hoped but is now home and recovering well.

Colors

Today during Junior's art portion of school he was learning about mixing colors. As soon as I started talking about colors he started making his "you have got to be kidding" face. I had to convince him that this is not baby stuff, so it is okay for him to pay attention and learn about it.
Once we got over that hurdle he had a great time. Getting to put his fingers in paint is a favorite thing and he made a huge mess.
Junior made a butterfly with one yellow wing and one red wing. In the middle he mixed the red and yellow so that part is orange. Nothing real exciting but he had fun and it helped him understand the concept of color mixing.

One of Junior's angels saw that he was doing a beach themed school unit and sent him this "beach in a bottle"(thank you angel Susan). I just love it, such a cute idea. Junior thinks it is cool and as soon as we had read the note he thought it had to go back in the bottle.

Relaxing With a Story

Junior decided to stay awake again last night so is a tired guy today.
The first thing he wanted when he got up was his switch, lights, and Amelia Bedelia story. When he is energetic, in his back brace, and sitting at a more upright angle his head control and movement are much easier and quicker. Today he is tired and I am still hesitant about putting his brace on him because there continues to be some swelling around his port site. So though you will see that it takes him a lot of work(and some extra time) to get the story and lights on each time they go off he still enjoyed every minute of it. Sure wish there was a switch that responded to a lighter touch for times when he is tired and/or not up in a good position for access.
Here are two little videos, my camera limits the amount I can tape at one time so these were taken back to back but I had to pause for a moment so it would let me keep filming. Junior listened to his stories for over an hour. He still loves Amelia Bedelia, some things you never outgrow.

A Special Thank You

I want to say a very special thank you to all Junior's Angels from Angels 2 The Heart.
I had been upset because we could not have a party like we usually do for Junior's birthday. With the flu risk, my brother in law in the hospital and Junior's port placement, a party was just not an option.
Thanks to Junior's angels he did not feel he had missed out on a party at all and felt like a very special birthday boy.
Cards came from all over the states and even overseas. A balloon bouquet, gifts, and an outpouring of love, all from people who have never even met Junior. We are truly blessed by this amazing group of people and words could never express our gratitude.
Junior's face lights up when I tell him he has Angel mail, God uses you to bring a smile to the faces of so many.
Thank you and God bless you all.

A few of Junior's cards
Junior loves his balloons


For those of you who would like to learn more about this wonderful program you can visit their website Angels2Theheart. They provide weekly cards and notes to lift the spirits of children and adults dealing with health issues.

Stander and Mr. Giggles

Since Junior's port placement he hasn't been comfortable wearing his back brace and he needs to wear it to be in his stander. Last night I tried it to see if he would tolerate it now that the port site is healing. He did great and enjoyed hanging out in his stander and looking at the Transformer sticker book he got for his birthday. He was so focused on the book and was far too busy to stop and smile for the camera.
In this pic he is showing me which sticker goes on which missing piece of Optimus Prime
Now he is picking out which vehicle goes with the transformer
Junior decided he wanted to stay up much of the night and "talk" and giggle. He wasn't having any issues, just didn't feel like sleeping.
This morning I had a tired and crabby guy. He was complaining about everything and very unhappy when it was time for treatments. Thankfully I got him to take a short nap and then he relaxed and listened to his favorite music(the Hannah Montana Movie soundtrack). The happy guy was then back and ready to go. Here he is during postural drainage time(the blanket over him is a weighted blanket because if he coughs he slides down). Junior was watching one of his shows and thought it was soooo funny.

The weather has gone from hot, to cool and rainy, and now back to hot again. This is tough on Junior and his asthma but he is hanging in there and not letting it get him down.
With Mellisa(my sister) staying at the hospital, Abigail is staying with us and Junior is very pleased about that. Here they are on Sunday, Abigail was dancing to the music and Junior thought she was oh so funny.
Today Junior was singing and giggling with his i-dog.

I mentioned how Junior's eyes get very red and swell after anesthesia, well here is a picture taken on Saturday morning before we left the hospital. His poor puffy face, I really don't like this picture.
His port site. I will take another after the bandages fall off(the line across his chest is marker, the surgeon drew the line so she could see how far his brace comes up).
This one is from Saturday eveningThis is from yesterday

WoooHoooo We are home. Junior was so happy to be out of the hospital and started giggling as soon as we got in the car. The port placement site is a little sore but Tylenol is keeping him comfortable. The incision is very small and there aren't even any stitches, just steri-strips which will fall off in a few days. I will post a picture of it later for those curious about how it looks. Very small and if not for the bandage it would not even be noticeable.
We have to be careful when doing his treatments but so far he is handling them well. A rolled towel over the port site is keeping it from getting bumped too much and causing much pain.
Junior's eyes are still quite red with a little swelling from the intubation(Junior reacts that way to anesthesia)but that should go away in another day or two. The bridge of his nose is a mess right now(it was finally healing but got rubbed a bit during the surgery yesterday and then the added bipap time didn't help). The doc gave us some special putty type stuff to put over it and he thinks it will protect it and allow it to heal. You might say we have a love, hate relationship with his bipap. His new mask is great but it is still going to take some time for his old Bipap battle wounds to heal.

My brother in law is awake and they extubated him a few hours ago. He is in a great deal of pain but doing well considering the surgery he just went through.

Going Home

We are all packed up and just waiting on the Heparin to come up from the pharmacy so the port can be flushed before we head home. Junior had a decent night, only one little bump but I had expected it because he missed a couple of his treatments yesterday. Chest x-ray looks good so we are off.

My brother in law is out of surgery, stable, and in the ICU.

thanks for your prayers.

Port is In

The Port is in place and the surgery went well. Junior was his gunky self so they decided they needed to do a bronch while he was intubated to be sure he had no plugs. After everything was done getting the tube out was a bit of a bumpy ride but they succeeded and he was placed on bipap to wake up. Being so late in the day there was no way he was going to be awake enough to be off bipap for the drive home so we are staying the night. Hopefully the night will go smoothly and we will be heading home tomorrow. Junior always wakes up very slowly from anesthesia so I pray he doesn't decide he needs to sleep his way through tomorrow as well and keep us here an extra day.
Thank you all for your prayers.

My sisters husband had his surgery bumped to tomorrow morning. He will be headed for the operating room at 6am.

Port Placement is Started

Junior has been in the operating room for about 5 minutes now, please keep him in your prayers.

Dancing Dog

Junior's teacher is so good and picking out the perfect things for Junior. This birthday was no exception. He opened her gift this evening and it was an I-Dog Dance. He loves this toy, actually I love his toy to. It is great and he can enjoy it even if he isn't feeling well or is just relaxing. No need to push any buttons to keep it going. This is a great toy for a child with disabilities, music, lights, and dancing, doesn't get any better then that.
Junior meeting his new puppy
Watching it dance and light up.

Junior's dog in action


I am as ready as I can be for Junior's port placement tomorrow. Very nervous but I get nervous any time he has a procedure, no matter how small or large. Please say a prayer for him.
My sister's husband's surgery has been moved to Saturday morning.

Thank you all for your birthday wishes, Junior has loved hearing them all. Also thank you for your prayers, we are truly blessed to have so many wonderful prayer warriors.

Happy Birthday Junior

Happy 11th Birthday Junior, we love you!!!!!!
Thank you Angel Susan for the wonderful balloons. Junior was sooooo excited when they arrived yesterday.
Enjoying his balloons during postural drainage time last night
Junior is having a nice quiet day today. He is so funny and will open a gift then want to play with it before opening anything else. Add treatments in there and he has opened 2 so far and it is afternoon. Thats okay it makes his gifts last all day. I will be sure to post more pictures later.

Please say a prayer for Junior tomorrow. He will have his port placement at 3:30pm. If all goes smoothly we will come home the same day but of course we will go planning to spend the night.

Prayer Request

Please be in prayer for my sister's husband Rob. He had a heart cath today and will be having open heart surgery on Friday. He will need 4-5 bypasses.

Getting Glasses

Junior saw the neuro-ophthalmologist(new doc who I was very impressed with) today and after a very thorough check I was told that Junior needs glasses. Tomorrow we will take the prescription by the eye center and pick out some frames. Junior is so funny and thinks this is wonderful since now he will have glasses just like Abigail. Considering how much he loves his sunglasses I don't think he will have much trouble getting used to these. The doctor told me I can expect to see a big difference in his vision with the glasses. Junior depends on his vision so much so this is great news.

Please keep my sister's husband in your prayers, tomorrow afternoon he is having a heart cath. He may need stents or heart surgery.

Wii & Family Visit

Junior and I were playing the wii last night. He was having a great time and loves to play while in his standing sling. I can even give his arms a good stretch without him realizing he is exercising.

Just goofing around

This evening several of our relatives stopped by for a quick visit. It had been quite awhile since we saw them last so it was great to catch up with everyone. I realized after they left that we didn't get a group picture with the kids in it.

Movies & Fun

Junior loves his movies and is very picky about what he wants to watch. This morning before he got up he wanted Meet the Robinsons and thoroughly enjoyed it.

During exercise time it sometimes helps to let Junior pick out a movie. Having a movie playing keeps him distracted and he is so determined to see the tv that he gets lots of neck control exercise without even realizing it. Today he was very excited because Beverly Hills Chihuahua is now on his netflix box. He loves animal movies and I think this is on its way to becoming one of his favorites.
Junior enjoyed hanging out in his standing sling at the end of his exercise session. He was doing so good that he went without his neck brace nearly the entire time. He was very proud of himself(the white you see is his back brace).

This evening Mellisa and Abigail stopped by with a couple of Abigail's friends. They had planned to watch a movie before heading to her house for the night. Instead they decided to pull out all the craft stuff and have some fun. Junior was worn out by the time they arrived and was happy to just watch them(he thought they were so silly and I don't think he could figure out why they would want to make jewelry).

Junior has had a really good day and this makes 2 in a row using only a half liter of oxygen for the entire day. Considering the weather change and bad air quality that is amazing for him.

Please say a prayer for my sister's husband. He will be having a heart cath sometime next week and depending on the results may need stents or surgery.

IEP

Today was the yearly, dreaded IEP meeting. After such a tough year with Junior's health, school was on the back burner so not much was accomplished. We had decided before the meeting to just roll everything from the last IEP over to this one. That made it nice and there were no battles over appropriate goals and services. Aside from a few small "discussions" everything went smoothly. Junior's teacher is awesome and we are so happy to have her on his team.
Junior stayed in his room and watched a movie while everyone was here, most of the people at the meeting came from a classroom and we can't risk him picking up any germs.

I just realized that one week from today Junior will be 11, not so little any more. Junior you are my hero, you have faced many mountains this past year but climbed each one with courage, strength, and determination. Your great big smile is contagious and shares the joy with which you live each and every day. I love you and am so very proud of you.

A Very Silly Guy

Today Junior wanted to paint but decided he was going to give me a hard time and not let me get pics of him at work. If he heard or saw me he would stop painting and giggle at me.
Junior loves to tease, and not cooperating for the camera is his favorite way to "get" me.

Here is a few seconds of video where he is painting in super slow mo speed since he heard me behind him.

A couple shots I managed to sneak in of Junior hard at work.
Now Mr. Silly laughing at me and thinking he is pretty sneaky.
The finished artwork, once it is dry it will be on its way to someone special who is having a birthday.
Mellisa helped me move furniture around so Junior can see the tv from his recliner. He is one very happy kid now. Yes, he is watching Walker again today.

Treatment Music

After Junior's vest treatment when it is time for hand percussion and postural drainage I usually put some music on for us. Many times as soon as the music starts I get an earful from Junior as he demands I change it to something of his choosing. He is not at all opinionated is he?
This evening I grabbed a cd and put it in his dvd player, I turned around to see him giving me his serious face, prepared to let me know if he didn't approve of my music choice.
I had mistakenly put in a dvd of the concert(which I didn't even know was in the box) instead of the cd. Junior isn't usually a big Chris Tomlin fan(not loud enough for him) but he thought watching the concert was wonderful. He even wanted to watch it twice and was trying to sing along.