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.