Sunshine

Today started off with a meltdown from Junior.  He was not at all happy that I would dare wake him up before noon and make him get up.  Lately he wants to stay up all night then sleep very, very late and we are trying to break the pattern.  I got him up at 9:30am and you would have thought it was 5am from the way he complained.  I was told over and over "out, out, hIIEE, out"(in Junior speak that is " get out of my room Heidi I want to go back to sleep).  Once he got up and decided he no longer needed to be mad at me he was ready to roll.  The sun was shining so we went out for a short bike ride.  With this being such an odd winter with such crazy weather he hasn't gotten to ride much.  We had to keep this ride short, which a certain little boy was very disappointed by.
Getting ready to roll

 

He did not like that we paused for a pic so was not going to smile    

  

After the bike ride we headed back out for a nice long walk.  We stopped at Target while on our walk and checked out the dollar section.  Junior came home with some mini squirt guns and can't wait to fill them with paint and do a little squirt gun art(we didn't get to it this afternoon but hopefully tomorrow).  

 Stopping to check out the roses while on our walk. 

When we got home Junior had his treatments and was then ready for a rest.  While he was resting and listening to stories on his ipad a package arrived for him.  It was a cute little tubie giraffe, sock monkey animal(thank you Brittney).  

 

 

 

While Junior was resting I finally had a chance to put patches on his tshirts.  With his back brace, all his undershirts need a hole in them for his feeding tube.  I don't like having just a cut hole since it starts to unravel and make the shirts look crummy.  Instead I like to cut a hole in patches and then put them on his shirt(fabric stickers also work well but they are a bit too pricey). 

Our Weekend & IPV Update

Junior's sleep schedule continues to be a mess but aside from that he is doing really well.  After an illness or in this case many days in a row of asthma his sleep schedule gets messed up and it can take awhile for it to get back to normal.  At the moment he is having a very hard time getting to sleep at night and then is awake in only a couple hours.  He then goes back to sleep around 5am and wants to sleep until 11am.  This week the goal will be to get his sleep back on track so we can get our regular daily routine back.
Saturday evening we decided to go to church because I knew there was no way I was going to get Junior awake in time this morning.  It was odd to be there on Saturday but still really nice. 
Today Junior has been sleepy but I have kept him busy and tried to avoid any naps.  He has been watching movies, bouncing on his therapy ball, exercising, and playing with his toys.
Junior also helped me pick out something to send to Grandma for her birthday and was very excited to pick out his own little gift for her.  Grandma reads our blog so we will have to keep the gifts a secret until Tuesday.

Junior even got on his bike this weekend.  He was very excited about it even though he looks less then pleased in the picture.  He was a bit mad at me because we were just riding in the house.  Tomorrow we hope to go out for a real ride and he can't wait.  
  

Just over 2 weeks ago a new medical machine was added to our arsenal.  Now that we have used the IPV awhile we can see the difference it is making.  I have been keeping track of Junior's oxygen use and what his oxygen levels are when he is on room air.  What I am seeing is a rise in his overall oxygen levels with less need for extra oxygen.  Even on the days when his asthma was bad and we had to use oxygen we did not use as much as usual.  His night time oxygen levels have also improved.  A few days ago we finally worked up to the full IPV treatment time and have been decreasing his airway vest time.  His airway vest treatments are down to about 10 minutes in length instead of their typical 30-35 minutes.  We continue to see forward progress even with the decreased airway vest time so the hope is move it to PRN(as needed) in the very near future.  We had hoped for this when we go the IPV but I really wasn't sure what the outcome would be.  So happy that it is working so well.


I have been reminiscing tonight and it is hard to believe that nearly 3 years ago Junior was struggling so badly, sleeping constantly, and we were facing the need to trach him.  He was never without his extra oxygen and we were in fact told that being on oxygen was his new normal.  He would need it 100% of the time.  Then came the horrible hospital stay where we were faced with spending months and months in the hospital if we went ahead with the trach.  God truly was watching over all this, my struggle with whether or not to go ahead with the trach caused a delay and the surgeon had to postpone.   The doctor did a bronchoscopy and Junior was not waking up after it so I asked the nurse not to give one of his meds.  Stopping that medication turned everything around, he woke up and the spunky energetic kid I had wondered if I would ever see again, was back.  We still had to deal with the bacteria in his lungs but everything had changed and I knew he would be okay.  Amazing how God works, had we not been admitted for the trach and then had it postponed we might never have discovered that there was an issue with his medication and it was the reason he was constantly sleeping and his airway was collapsing. He would have had a trach but it would not have fixed anything.   2 weeks after being admitted for a trach we were home without it.  It took awhile for Junior to recover his energy but he is a champ and wanted to get back to living life to the fullest.  Junior has a battle scar from this time which will always remind me of how blessed we are to be where we are today(the scar on his nose from the constant bipap he was needing).  We don't know what the future holds and someday he may need that trach but we will face that when/if it happens.  For now we are thankful for every moment and are reminded that life is a precious gift which should be cherished.
Now that I have bored you with my memories, we return you to your regularly scheduled blog posts.

   

Giggles, Growls, and Sleep

After several days and nights with very little sleep Junior slept quite well last night.  He was a sleepy but very happy guy today and and oh so silly.  He would growl at me then burst into giggles before stopping and waiting for me to growl back at him. 

 This afternoon I could see the lack of sleep catching up with him and by about 4pm he was sound asleep and is still asleep(it is 7:30pm).  He will likely wake up for treatments in about an hour and then go back to sleep for the night. 
 

My mom has been quilting for many years but it is something I have never tried.  Today I picked up a book and some material(for a very small quilt) to give it a try.  

Better Day

Junior had a bumpy morning but once the rain started, his asthma calmed down and he is now feeling much better.  He didn't sleep much last night so I expected him to nap much of the day but instead he didn't nap at all. 
Relaxing this evening, Junior has been quiet but smiley and in a good mood. 

Seizure Monster Strikes Again

Lately weather changes have been causing the seizure monster to strike and he showed his ugly head this morning.  Junior had just woken up but still had his bipap on which was a good thing.  A little medicine sent the monster running for the hills but Junior was one wiped out kid and ended up sleeping until noon.  I was very concerned that the seizure would re-injure his neck but after he woke up it was clear his neck was just fine.  
He wasn't up to much all day and his oxygen levels have been up and down but that is typical after a seizure.  Tonight he is getting his energy back and he was giggling at the tv.  Hopefully a good nights sleep will have him back to his happy, active self tomorrow. 

A Tough Day and a Smile

The clouds rolled in this morning and so did Junior's asthma and sinus  headaches.  He has had a rough day with many tears and lots of frustration.    I sat with him in his recliner for awhile and then tried to get him distracted with a movie but after a night of very little sleep he was just not coping well.  I quickly realized it was more the over exhaustion then the asthma that was causing the melt down.  I cranked up the air-conditioning so he wouldn't get too hot and then wrapped him in his weighted blanket, gave him his tubie monkey, and turned on some calm music.  It took a few minutes but you could see him relaxing and he was finally able to calm down and take a much, much needed nap(amazing how much that weighted blanket helps him be able to relax).
Snuggled up and getting sleepy(I have got to make him a new weighted blanket one of  these days, he gives me "the look" whenever I pull this one out, he thinks he is way to big for Cars)
 
 Before he fell asleep this little frog arrived for him.  It is one of those figures that you can hang on a flower pot.  After his nap he took a closer look at it and thought it was pretty cool.  He decided he would rather it hang on his IV pole tray then out on one of his plants.

No matter how tough the day is Junior always finds something to smile about.  It may be a snuggle, a hug, a note from one of his angels, or even a little frog.  So many people look at Junior and only see the struggles, I wish instead people could see what I see each and every day.  The joy, the love, the sparkle of mischief in his eyes, and the determination to let nothing hold him back.  A life worth living that is being lived to the fullest.  We all have struggles it is how we handle those struggles that show who we really are.  

  

Giggling when he woke up and caught me trying to sneak his bipap on him 

Our Weekend

Junior has had a good weekend aside from his sore back.  It is slowly getting better but he forgets it is going to hurt and will turn his head too quickly.  Then you see the wince and tears followed by an ice request.  Hopefully he will tolerate his back brace for a little while tomorrow, it isn't good for him to be out of it this long but we don't have much choice. 
I have been getting summer clothes out and putting winter clothes away as well as cleaning house this weekend.  Junior loves weekends like this because it means movie days for him.
Here he is enjoying his shows.




Playing with his car, look he switched it to his other hand all by himself.



Ready for a haircut

When watering the plants we found our very first tomato.  Hard to believe the weather has been so warm and everything is growing really quickly. 


Today the Evan's family said goodbye and celebrated the life of their beautiful daughter.  ^Emily^ had the most contagious smile and you couldn't help but smile when you were around her.  She will be missed and will forever be in our hearts.  Pink and Hello Kitty today for ^Emily^


The butterfly in Junior's plants in memory of all his buddies who are now in heaven.  This pic was taken through the window last night so you can see it lighting up.

Prayers

Please continue to keep the Evans family in your prayers as they say goodbye and celebrate the life of their beautiful daughter tomorrow.  ^Emily^ loved Hello Kitty so Junior is holding this Hello Kitty heart in her memory. Heaven has gained a beautiful angel. 






Please continue to also pray for Mariah and her family.  She is courageously fighting her last earthly battle and will soon be flying to Jesus arms. 
Her mom shared this picture of her beautiful daughter with us today.  We love you Mariah, such a strong, brave girl. 

Junior's Garden

Today Junior's back is feeling much better. The swelling is going down and as long as we stay on top of the Motrin he does okay. The only time he has real trouble is if he turns his head quickly. Then he cries and wants the ice. He tolerated being up in his wheel chair this morning as long as we didn't put on his back brace.

Junior loves planting things so we went out on the porch and did a little gardening. We live in an apartment so our plants all went into pots but we should still have plenty of veggies in several weeks.
Lets go outside
checking out some of the plants
Getting a little help pouring dirt in the pot
All ready to put in the plants
Junior's plants are all ready for watering
All done planting our little "garden"
The plants you see in front of the yellow and red pots are tomatoes
We added a butterfly to one of the plant pots in memory of Junior's little buddies who are now in heaven.
Time to relax in the shade

Back/Neck Injury

Last night the seizure monster visited but thankfully we were able to boot him back out the door quickly. After the seizure Junior cried and cried and nothing was helping. I held him for a couple hours and he would settle for a few minutes then the tears would start again.
I finally got him calm and asleep but he kept waking up during the night and was very restless.
Today he was crying and unhappy, Tylenol again did very little and I figured he must be getting ill. Then we found out why he was so uncomfortable. He had a large swollen area on his upper back. Poor kid had pulled a muscle during the seizure and the more it hurt the more he tightened up which made things even worse. Motrin and ice and I have already seen some decrease in swelling. Junior quickly realized the ice helped the hurt and gets upset when I take it off to give him a break. His doctor said the ice and motrin should do the trick but to expect him to continue to be uncomfortable for a few days.

Ouch my back hurts so bad
A snuggle with monkey always helps and watching tv keeps him distracted
Getting a little rest
The ice pack works its magic

Please keep Junior in your prayers, back pain is miserable.