Another Busy Week

It has been a busy week with several appointments in Sacramento.  Junior is doing well considering the changing weather.  He has some congestion and is napping more often then usual but otherwise is handling it very well.  Before the trach this would not have happened and this type weather changed would have meant major issues.
His appointments went great, labs are good, and he doesn't need any meds adjusted.  The trach has helped in so many areas.  He hasn't had any autonomic episodes since the trach and his overall seizure activity is decreased.  Being able to breathe well makes such a difference.

Day one of appointments started too early as far as Junior was concerned.  Here he is giving me his grouchy face while waiting for the doctor. 

His smile was back once he knew we were headed home.

Day two of appointments started with a much happier guy.

Watching Scooby on his ipad while waiting on the doctor.  His eye is so much better and the doctor was pleased with how it looked.

When we got home there was a package waiting for Junior.  The company that makes his Passy-Muir valve(talking valve that goes over his trach to allow him to talk) sent him a bunch of fun goodies.  A dino with a trach and talking valve, a dino coloring book about a child who needs a trach, crayons, key chains, a tote bag, and a tub of other various dino themed items.  Typically he would have thought he was too big for this but when he saw that the dino had a trach like him it was suddenly cool(my first thought was "oh this dino stuff is perfect for sensory activities").  

 Just relaxing after his busy days.
Goofy kid riding in his lift from his chair to his recliner.

 

 Happy guy convinced that he needs to stay up for a movie instead of going to bed. 

With Junior's trach several new pieces of equipment were added and everything will no longer fit on his big cart.  For the last couple months I have been making do trying to avoid spending the money for a new cart.  After a couple broken cords and dealing with the hassle of dragging the heavy machines around the house for awhile, I decided it was time to break down and buy another cart.  We don't have the space for a larger cart so instead bought a secondary cart.  It is perfect and holds all the things it needs to.   We now have two carts and everything is back to being organized and easy to access like it needs to be.  I love it. 

Busy Week

I can't believe the week is almost at an end when it seems like it just started.  Junior saw his pediatrician on Monday regarding his eye.  She checked it our carefully and thankfully there were no abrasions or issues with his cornea.  Junior does not fully close his eyes at night and also doesn't always blink fully so we are constantly monitoring his eyes and keeping ointment in them.
Tuesday he saw his eye specialist and she used the drops and special light and determined it was likely some type of allergy reaction but seemed to be calming down.  We will see her next week to follow up and be sure everything is cleared up.
Junior also had his flu shot earlier this week so yesterday was not feeling so hot.  It is typical for him to feel a bit "off" for a couple days after his shot.
Worn out after his appointments. 
 
 Last night he was starting to feel much better.
Here he is testing out the inflatable sensory tray he got for his bday.

 Today he started off very tired and kind of cranky but then was ready for some activities.  So nice to actually have him request to get in his chair to do some things.
We started off working on a fall craft.

  

A little basketball.  Doesn't everyone use a pool basketball rim and foam golf balls to shoot hoops?

 Junior then decided he wanted to play with his dart gun.  He is a mess with it and loves to try and "get" me.

He was being such a "teen" and refused to turn on the gun if I was videoing.  I did manage to sneak these few seconds of him using his head switch to activate it.

This evening relaxing with some I Love Lucy.

I have been meaning to get a video of Junior's trach book posted on here.  I used the app pictello to create this book to help Junior get used to the idea of getting a trach. I had to video it in parts because it is too long.  It really helped him get used to the idea of the trach and prepare for it.  

Part 1

Part 2

This is the book I made after his trach while we were still in the hospital. 

Icing Smiles

Yesterday the amazing Icing Smiles program brought Junior a very special cake.  His birthday was in early September but with his surgery and recovery there was no way he was up for any kind of party then.  He is still low on energy and had a few rough days last week but he loved his cake and seeing his best buddy and a few other close family/friends.  We kept it to a small group because of the illness risk this time of year but it was so much fun. 
Here are some pics from our special day.  Thank you to Icing Smiles and the fabulous baker who made Junior's cake and even delivered it to us.  You blessed us more then you can imagine and Junior will be "talking" about his awesome cake for many years to come. The comic book style was perfect and gave it the "older" kid look for my big guy.  I have to add that I was told by one mom that this was the best birthday cake she had ever tasted and I had to agree.  YUMMY definitely doesn't cover it. 
(I was so disappointed when I pulled these pics off my phone and saw that most were kind of blurry. thankfully I also took a few on my regular camera) 

 

 

 Now for a few collages of photos. (in case you are curious the spidey in the background of many pics is wearing Junior's Beads of Courage.)

 

 It was so hard to actually cut this work of art but wow it tasted wonderful.  Marble chocolate and vanilla and oh so moist. 

 The bottom corner of this pic is Junior with the lady who made this fantastic cake.  Junior was napping when she brought the cake so is asleep in the pic.  Later I pushed him right up next to it and got him to wake up.  It was so funny, he opened one eye and then burst into a huge grin. 

Please keep Junior in your prayers.  His eye is still very red today so I again spoke to the eye doctor.  They think it is an inflammatory reaction from him not closing his eyes well(something we used to deal with frequently but had been stable for a few years now).  Hourly ointment 24/7 at the moment is making for 2 sleep deprived people in this house. Thankfully when his eyes are stable we just need the ointment a couple times during the night which is no big deal.  They want us to see his ped tomorrow and then follow up with the eye specialist on Tuesday. 

Trying Out His PMV

Today Junior tried out his Passy-Muir Valve(PMV) for the first time.  The PMV is a one way valve that allows him to "talk".  He breathes in through the trach but it then forces him to breathe out through his mouth.  This causes air to flow across the vocal cords just like it does for a non trached person.  It will take him some time to adjust to but he did make a few sounds and even said "aa-A"(Abigail).  It was wonderful to hear his voice again after so long.  The PMV is the purple piece on the end of Junior's trach.

  Abigail came over for awhile this afternoon and Junior was feeling energetic enough to get up in his chair for some golf. 

 Of course we have to make goofy faces.
 
It has been very slow but Junior is beginning to get his energy back.  We are kind of on a 3 steps forward and 2 steps back path but we are moving in the right direction.  Two days in a row now he has had enough energy to spend a few hours in his chair doing activities.  He has also been requesting non black and white television programs which lets me know he is most definitely feeling better. 

Junior has been counting down the days for the new Transformers movie to come out.  He got a gift card back at his birthday and that is what he wanted to get with it.  He was one very excited boy when he got the movie and couldn't wait to watch it.

My happy guy this evening.

A Little Art

Junior is still having some difficult moments with his asthma but things have greatly improved.  He has a little more energy and is even up to doing some short activities.

Yesterday a friend stopped by to visit and brought Junior a very cool spider-man lamp for his birthday.  He loves it and can't wait to hook it up to his switch so he can turn it on and off all by himself. 

 Today we did a short art project.  We glued some crayons to the top of a canvas panel and then he used his switch to turn on the hair dryer and melt the crayons.  Junior was quite serious while he was working but gave me his big grin when I told him to show me his finished artwork. 

 I am working on coming up with some fall art projects for him for the coming months.  It is always a challenge to come up with new things to try so if you have any great ideas we would love to hear them.  We have a few art projects we do each year but then I try to add a few new things.

Our Week

Wow I didn't realize it had been so long since my last post.  Life stays very busy and I don't have a lot of down time for blogging. 
Junior has had an up and down week.  The smoke from the fires has caused some major issues which make me so very thankful he now has the trach.  He has been able to spend extra time on his vent/bipap with which has been a huge help.

Lots of extra naps so I got a little sewing done.  Many of Junior's shirts are too snug around the neck and rub on his trach.  These are some of his favorite shirts so I didn't want to just get rid of them and decided to try adding a little v-neck to them.  The cloths are what we use when he coughs and I wanted them to look "cooler" for when we have to use them when out. 

 The awesome Beads of Courage program that Junior is part of.  He got his new beads from his hospital stay this week and loved stringing them.  He is so proud of his beads and how they help tell his story.  Each bead stands for something medical he has been through.

 Yesterday was just one of those days.  Weather was changing so he had a headache and every little thing caused tears and melt down. Today is going better so far and hopefully things will calm down.  

Asthma

There are several fires burning in California right now and though none are close to us the air quality is still very bad.  Smokey air and severe asthma are a not a good mix. 
Junior's trach is definitely helping us deal with it and preventing the typical airway collapse episodes, plugs, and the all around scary stuff that often accompany his asthma.  He is still struggling and it is hard on  him but it makes a huge difference to not be in crisis and to have a secure airway.  Lots of coughing and secretions and he is needing some oxygen as well as extra vent/bipap time but he is stable. 

Today we headed to Sac for an appointment with Junior's GI.   She said he looks great and his weight is just right for his height.  We do have to keep a close eye on his weight now that he is trached.  With the trach he is no longer using so much of his energy to breath so may start to gain weight more quickly then he should.
She now doesn't want to see him until spring because of all the illnesses already starting.  They are already seeing flu, colds, and other things not typically seen until later in the season.
Here is Junior enjoying the fish tank while waiting to see the doctor.  He loves watching all the brightly colored fish.  The smoke was much worse in Sac so he needed his mask over his face as well as the HME on his trach with oxygen.

 Yesterday evening I put all his birthday cards up in his room.  He loves it and thinks it is wonderful to be able to lay in bed and see all his cards.  This way he can enjoy them for a long time.

Giggling at the Andy Griffith Show

EEG

This afternoon Junior had an EEG to be sure his seizure medication is doing its job and we don't need to make any adjustments.
He did not like having all the goo and electrodes put on his head but still did great for everything. As you can see he was very happy to get out today he just didn't like the test. 

 I changed Junior's trach again today and I am so happy to report that he did awesome.  Just one big cough when the old trach was removed but no gagging or excessive coughing when the new one was put in. I was very happy to see this and know that trach changes are not going to continue being so stressful on him.

It was a blessing to see him a little more energetic today and very happy.  Baby steps but we are moving in the right direction.  His HMEs(heat moisture exchanger, keeps the airway moist and filters the air at least a bit) came in today so now we can consider some short outings while the weather is still warm(at the moment it is downright hot).  Sicknesses are already starting so we have to avoid groups of people but I hope to get out for some walks and other outdoor fun. I know Junior would love to take a trip to the zoo as well as the Aerospace museum before winter arrives. 

I wanted to do a quick update on how he is doing with the trach since we just passed the one month mark of when it was placed.  He is still very tired as I mentioned above but moving forward.   He is gradually becoming less sensitive to movement and I can lift and transfer him without it always triggering a cough.  His oxygen needs have dropped drastically since the trach was placed.  During asthma episodes he is like a little fountain with all the coughing but we are not ending up in crisis mode and it is something we can manage. He has not had an autonomic episode since the trach which is fantastic.  We suspect that now that his body is no longer having to fight just to breathe he is more able to cope with the day to day stress of things like doctors appointments, outings, etc.  The other thing I have noticed is a decrease in seizure activity.  He has not had a big seizure in 7 weeks and I am also seeing very little of the milder seizure activity that can be a daily thing(facial twitches, startles, sensitivity to certain sounds/motion/lights).

Please pray that this continues and the fall/winter are not too hard on him.

Happy Birthday

Happy 16th birthday to my sweet, funny, determined, and very happy boy.
I love you and am so proud of you.

 Thank you doesn't seem enough to say to all those who made Junior feel so special today. The cards, notes, surprises, face book messages, texts, and phone calls were amazing they put a smile and look of total joy and wonder on his face. He loved each and every one of them. There are too many for us to thank each of you individually but know you have touched our heart and made Junior's birthday a day neither of us will soon forget. Thank you.

Junior yesterday adding the cards he had gotten to Spidey.  Then today with his mountain of cards. Sleepy smiles but loving everything. 

 

Pizza Time

Junior's ENT follow up went great yesterday and everything looks good.  I had been slightly concerned about some redness around the trach but he said it is caused by moisture from the coughing and not an issue.  He removed a couple stitches that had never dissolved and we were quickly on our way.  I think it was pretty much the quickest appointment we have ever had. Even including check in and waiting for the doc we weren't there more then 15 minutes. 

Junior was exhausted when we got home and demanded requested to watch a movie in his bed. 
Abby came over and wanted to make pizza for dinner so she got all the different parts ready and set it up in his room so he could help.  Junior loved it and thought it was great to pat out the dough and add the sauce, cheese, and topping.  He was tired so looks a bit serious in the pics but really was having fun.

Pausing for a little silliness. 

 Reading fun

Junior is struggling with his asthma today and could use a few prayers.  The trach is definitely making it easier to manage and he is so far staying off oxygen.  He is just doing a lot of coughing and doesn't feel well.

Oxygen?

Things continue to be busy but we are finding our routine and adjusting to the trach. 
Junior is slowly but surely regaining his energy and beginning to get back to his regular activities. 
Today he even spent some time in his stander which is something he has not been up to since surgery.

 Junior watching the Munsters.  Though it is hard to see his monitor it says 97%.  He is not on oxygen the tube you see is his mist machine.

 Goofy faces with Abby

 Someone woke up happy.  This is what his trach looks like without the mask or anything over it.

Relaxing are his exercises. 

God is so good. Just a few weeks ago I never could have imagined Junior going more then a couple days in row without oxygen(and that would likely only be during the day).  9pm this evening marked 7 days, 1 entire week with no oxygen, not even at night(we have only been back home since his surgery for 10 days).  He still has lots of congestion, his asthma has definitely not disappeared, and lung disease is a part of life but wow.  We knew he needed the trach but with his lung disease and frequent lung infections none of us, his doctors included, expected to see this.  Please pray that his asthma doesn't get too bad as we move from summer into fall.  This time of year can be very hard on him.   We don't know what tomorrow holds and with Junior things can change in an instant but for tonight we are thanking God for this amazing blessing.