Our Weekend

I spent much of Friday on the phone trying to straighten out supply issues.  The new company we thought we had set up to deal with Junior's respiratory supplies wasn't returning calls or being at all helpful so I chose to find a different one.  It looks like most of it is now worked out though I still have to find a supplier for his suction stuff.  Nothing like having 6 or 7 different suppliers to work with now to get everything.  As long as we can get what Junior needs then all is good, I just need to make a chart so I know when to call who for what supplies.

Yesterday Junior was off.  Tears one minute and smiles the next.  He couldn't handle noises and was very much on edge. All the signs that the seizure monster will be making an appearance.

 As the day went on I could see that a seizure would be hitting it was just a matter of when so I made the decision to go ahead and give his meds.  This is something I had recently discussed with his neurologist because Junior often has very clear signs to let you know when a seizure is coming and these seizure are so hard on his lungs and airway.  Just as I was finishing giving his med the seizure did indeed hit.  Thankfully having the med on board made the seizure much less intense and he did not go into distress afterwards like he usually does.  He needed some extra oxygen and went into a deep sleep but that was the extent of things.  No bipap, or other intervention was needed which was such a blessing.  Considering how he has always reacted to these seizures in the past I kept hovering waiting for things to go south but they didn't and he stayed completely stable. 
Sleeping off his seizure.

 Yesterday morning my sis stopped by with these beautiful berries.  I love strawberries and these are sooooo good. 

 Most of the berries were blended or sliced and frozen for use later.  I also sliced a big bowlful to eat now and turned them into a crustless pie.  Love knowing there are 30 or 40 servings of strawberries in my freezer.

Today has been quiet, Junior is recovering from the seizure so isn't up to much.  Abigail came over and they have been watching movies all day.  He has had a low grade fever and is needing a little oxygen but that is fairly common for him the day after a seizure.  I pray it is the normal after seizure thing and not a sign of illness, only time will tell.
Movie time today, they were watching Hotel Transylvania. 

 

I was goofing around with my camera and realized I could take panorama shots.  The top area of three of the walls in Junior's room, it makes the room look almost rounded but it is cool to get it all in one shot.

Toe/Foot Painting

After Junior's school session today we did some painting.  Instead of finger painting I guess you could call it toe painting. He thought it was great especially when I added some marbles and bouncy balls for him to kick around in the paint.  Way too much fun and I think I was enjoying it as much as he was.

Junior's school face followed by his face the moment he knew we were done with school and getting ready to paint.  Though he did great in school today he was being a little stinker and kept that grumpy face firmly in place the entire time. 

 Painting fun.

  

Splashing his feet in the water to wash off the paint was nearly as fun as painting.

 

 Not too long ago a very special little boy flew to Jesus arms.  This afternoon we made a memory buddy to take lots of love and hugs to his family.
We love and miss you ^Marsean^ , you will always be in our hearts.  Krystal our thoughts and prayers continue to be with you.

 This buddy was a little different then our others and I was so honored to make this special buddy.  This doggy belonged to ^Marsean^ and was very well loved by him.  It was sent to us to make into his memory buddy.  The feeding tube it has was sent by one of his best buddies Emmie, and Junior thought it needed one of his tube pads. 

Shriner's Appointment

Junior is going through a growth spurt and his AFOs have gotten quite snug.  This morning we went to see the orthotist to see if the braces could be adjusted.  An adjustment isn't going to be a good fix so he was casted for new AFOs.
He was in a great mood and thought it was all quite interesting.  He gave me a nervous look when the tubing went on his legs before the plaster but as soon as I assured him this was just for braces and would be taken right off he was back to smiling.  He then thought the wet plaster was very funny.

 After the casting was done Junior's current AFOs needed to be adjusted so that they can get him by until his new ones arrive.  We  were goofing around while waiting on the orthotist, even doctors appointments can be fun.

On the way home I needed to stop at Sam's Club and Junior was a very happy guy.  Though he cannot stand going into Walmart he absolutely love Sam's Club.  Also with it being so big and open it is a store I can take him into and not worry so much about him ending up sick. 
Junior was smiling, giggling, and having a blast.  I pulled out the camera and he refused to smile, every time I started to put it away he would start to laugh.  He thought it was great to tease me. 

 

 After we picked up the few things we needed I told him he was so good that I thought he deserved a treat.  Though Junior can't eat by mouth he thinks getting a taste of certain foods is just the best thing.  Cherry Icee is nearly his favorite thing to taste, coming in a close second to Dr. Pepper.
He had a taste there and we came home and put some in the freezer for him to taste later.  I like to put a few drops on his mouth sponges(little sponges on a stick which we use to rinse his mouth after tooth brushing) and then put them in the freezer.  They are his own little Popsicles. 
Enough icee for him to taste but not enough that there is any choking or aspiration risk(lol, his name is on them because I promised him I would put it on there for him)

Nearing 2 years off formula and I still love cooking Junior's meals and knowing he is getting healthy food.  This is his dinner and though it resembles formula it is actually the same thing I had for dinner(though in a very different form).  A grilled turkey burger, baked potato, big salad, and a slice of watermelon.  Coconut milk to thin everything and add some more cals and protein.  All blended up and ready to pour in his feeding bag for his overnight feeding. 

The wind is really bad now and Junior is napping while on his bipap but otherwise doing pretty good. Praying he continues to handle it okay and no seizures. 

Crazy Weather

First off let me say we are praying for all those in Boston in the aftermath of this horrible crime.  Such a sad day for our country but our country will not be stopped by these terrorist and they only make us more determined to protect our freedoms.  To unite and be even stronger. 

Between the wind and weather Junior is not getting a break.  So thankful that this has so far not set off any seizures but it is keeping me on edge. 
Yesterday Junior slept much of the day and when the weather is like this I don't dare wake him up because of the chance it will trigger a seizure. 
Today he had a little more energy though still a bit sleepy was a very happy guy. 

Junior wore green today in memory of his little buddy Andrew who is spending his birthday in heaven this year.  We love you froggy prince.  

This afternoon Junior kept pushing himself way back in his recliner.  I couldn't figure out what he was trying to do and even told him to stop because he was going to hurt his neck.  Then I realized he was looking at his sensory table as he leaned back and I asked him if he wanted to play in the sand.  Sure enough, I got a big smile and "yaaaa". 
Looking a little sleepy but having a great time in his moon sand.

Tomorrow we are off to Shriners to have Junior's AFOs adjusted.  They are getting snug since he just went through a growth spurt.  Praying the wind will slow down some so he doesn't have a rough time while we are out. 

Very Special Package

Yesterday morning a package arrived and I couldn't figure out what it could be.  I knew we had medical supply deliveries coming but those don't come from Shutterfly.  I quickly opened it and found the most beautiful photo book for Junior.  It is full of amazing animal pictures and is personalized for him. 
Junior loved looking at it(over and over) and especially enjoyed seeing pictures of the pets and finding out their names.  I wish I could have captured a picture of the look on his face when I read to him that the hedgehogs name was Penelope Pricklebottom.  He thought that was the funniest thing.
Thank you to Julie and her family for the beautiful book and for sharing your family, pets, and zoo pics with Junior, he thinks they are the greatest.  We also think your animals have fantastic names. 


Junior had a pretty decent day yesterday but was quiet and complained a few times of a headache.  The pollen is pretty thick but thankfully the wind is gone.  We did a little school work on his ipad and tried out a new reading comprehension app.  A very nice app and Junior did well with it.

A Little Sunshine

The past two days we have had horrible wind so even though it was sunny there was no way we could go outside.  Today the wind was gone and Junior was ready to get out and enjoy the sunshine. 
I rolled his sensory table out on the porch and Junior had a great time playing in the sand with his trucks, army men, and pattern rollers.  Too cool to smile but he was having lots of fun.  Every time I asked if he was ready to go in I was told NO.

 He has been struggling a bit with his asthma this afternoon but I am quite sure if you asked Junior he would tell you getting to go outside and play was worth it. 
He told me "I hurt, I have a headach, I need a treatment"(I only took a pic of the first part).  2-3 times a year he gets a new vest for his vest machine.  Today his new vest arrived and it is camo.  Junior was so happy to see the camo vest and smiled his way through the treatment. 

 This evening Junior's tree got a makeover.  Easter eggs are gone and now it is covered in bugs, lizards, frogs, and snakes.  Some of Junior's favorite things so he is very pleased.  Of course I am not sure what others will think and Junior can't wait to show Mellisa(my sis) who hates bugs. 

A Day in Junior's Life

I thought I would do a post that takes you through a day in Junior's life.  Of course our schedule can change according to Junior's health, appointments, weather, and other things.

This is what today looked like.
Junior woke up a little bit late after a late night.  Usually I would wake him up earlier but with the weather being off there is a seizure risk if I wake him up.  After giving him his meds, stopping his over night feed, giving him a little water, and taking off his bipap it was time for a treatment set.  First he picks either a tv program or music to listen to during treatments.  Today he wanted his music.
For those who aren't familiar with Junior's treatments I will go through his morning treatment routine.
Junior's medical cart with his main machines(those he needs throughout the day)

His treatment set starts off with a nebulizer treatment(pulmozyme is the medication he is getting). I forgot to take a pic of him getting his neb treatment this morning so this pic is from a few days ago. 

His IPV come next, from the look on his face I am sure you can tell it is not something he likes.  The IPV delivers pulses of air to loosen the mucous in his lungs.  This would generally be done with the mask over both the mouth and nose but Junior panics if it is over both.  We have found it works just fine when only on his mouth and he tolerates it so much better. 

 Then time for his airway vest.  The vest vibrates the chest wall to loosen mucous and help him move it to the upper airways so it can be cleared.  It is set so it starts at a low speed and then gradually
moves to a much  more rapid speed. 
 
Cough assist is next.  I give half of the cough assist treatment at this time(again not a favorite of his as you can see by his face).  I am holding the hose in the picture so you can see but when actually doing the treatment I would be holding the mask so it is sealed over his mouth. 

I then slide him to the opposite end of the bed and raise the foot of the bed.  This puts him in an "upside down" position.  He gets hand percussion on the lower lobes, even with all the other percussion we find he still needs this lower lobe percussion to stay clear.

Then he hangs out upside down for a little while so all that gunk we loosened can drain to the upper airways(that is a weighted blanket over his legs, it prevents any risk of him falling, of course I am right there but I still want to ensure there is no fall risk).  After this part he is moved back to the other end of the bed then the second half of his cough assist treatment is given.  At this point he can typically come off his oxygen if he is having a good day. 
 
Lastly is another nebulizer treatment(this time pulmicort), again I forgot to take a pic of him getting the neb today so this pic is from this weekend.

Next on Junior's schedule is his shower and morning care.
Goofy kid was pretending to sleep after his shower in hopes that I would let him watch a movie instead of exercising.

Exercise time is next.  During times when the weather is decent we head out for a bike ride and walk but that was not an option today.   We go through range of motion and a stretching routine and then he does some weight bearing and strength building exercises. I try to vary his exercise routine to keep it from getting boring.  During his stretching session I put on his different braces(hand splints, AFOs, back brace)


Up, up, and away, time for his stander and school work, giving me his "I am way too sleepy for school" look.

 School time as well as some craft fun while in his stander

 Into his chair for a quick break after all that hard work, he was working hard to look completely wiped out.

 Hmmm, he doesn't look so tired now that the tv is on for him.

A snack for the dude(when we are busy it is easier to give small boluses every 20 minutes then have him hooked up to the pump where the tubing may get caught and pulled out.  With his j tube he can only have 1 oz like this at a time)

He also gets his oxygen levels checked at least every hour if he is doing well enough not to be constantly on the monitor(this is his mini spot check machine).

After having his AFOs(ankle braces) taken off it is time for another set of treatments.  This time just one pic of treatment time. 

After treatment time Junior was ready for a nap.  He is still struggling with the weather and pollen so is more tired then usual(he doesn't typically take a nap and this time is just a little relaxing with a tv show or his solar system and music).  I would typically put him back in his AFOs before his nap but they are getting a bit tight(growth spurt) so today I put him in his night time AFOs instead.  We will be taking a trip to Shriners in the near future to get the braces adjusted. 

After his rest it will be time to get back on his feet, this time in his standing sling.  He will get to pick something to do and will also do some walking to get some exercise.  In the evening he gets to choose whatever he wants to do.  Sometimes that is a movie, painting, video games, ipad, computer, board game, toys, etc.  He is pretty wiped out tonight, and with all this wind I suspect he will sleep right up until treatment time(depending on the day he sometimes needs much more frequent treatments as well as treatments during the night, his average is 4 a day).  Then another gentle stretching and massage session before bed. 

There you have it, a day in Junior's life, we are so very blessed. 

Monkey Needs a Treatment To

Another quiet day for Junior with extra naps, bipap time, and treatments.  Would be nice if the weather would clear up and give him a break.  The fevers are slowing down and I saw a few smiles today so hopefully things are getting better. 
When Junior doesn't feel well then neither does tubie monkey.  He thinks tubie monkey needs treatments just like he does and he gets upset when I put his bipap on and don't have a bipap for monkey.  During my recent sorting and organizing of his medical supplies I came upon an old bipap mask that was also quite tiny.  It fits monkey and Junior is so pleased that now monkey can be on bipap when he is. 
Here are Junior and monkey getting a cough assist treatment and then napping with bipap on.

Look a smile under that neb mask.

Crazy Weather

We had rain and dark clouds most of the day which made for a very quiet, sleepy kid.  So  thankful that sleepiness was the extent of his weather reaction and no seizures were triggered. I got results to his labs and they were normal.  So it looks like the low grade fevers are from the seizures and this crazy weather.  He could also have been dealing with a virus.  I woke up sick today so may have caught whatever he had.
This is what much of the day looked like for Junior.  Bipap and movies(along with lots of treatments).

 On Tuesday I took a few minutes and made one more t-shirt onesie for Junior.  I had gotten these youth size onesies several years ago and Junior had long ago out grown them.  I found that they were perfect to use to make these t-shirt onesies for him but now I cannot find a place that sells the youth size.  I would even be happy to find size 4 T to try this with.  Does anyone know of a website or store that sells the 4T or larger size and doesn't charge an arm and a leg for them(I checked walmart, Target, Kohls, and babiesrus and found nothing bigger then 24months). 

We have been trying to figure out Junior's boardmaker program for awhile now.  It quit running on his computer and I was so frustrated since it would have been so nice to have for many school things.  I finally decided to try getting an external disc drive and see if that could be our issue.  Sure enough the external drive ran the program just fine and Junior was so excited to have it up and running again.  I set up his ipad boards so he could tell me what he wanted to tell grandma and papa and then I used boardmaker to copy what he told me.  I could then put it into an email.  He was sooooo proud to be sending his very own email using his symbols.  Proloquo2go(on the ipad) and boardmaker(computer) don't always have the same symbols(actually I have been much happier with the ipad symbols) so though it is what he said the symbols are not always an exact match.  Here is his note to grandma and papa(just took a pic of the computer screen to show it).  

 He was also so excited to write his very own thank you note to the amazing family who sent him the sensory table.  I will be sure to get pics of him using the ipad to tell me what he wants to say next time. 

  
This very moment as I was writing this post I received an email with some very sad news.  A very special little boy earned his wings tonight.  Such a sweetheart who left footprints on so many hearts.  My heart breaks for his mom tonight and I pray God wraps her in His comfort and love in the days to come.  We love you B and your legacy will live on in the many, many people who have been touched by your life.  Every time I see a Cars movie or toy I will think of you and your mom.  Fly to Jesus precious boy. 

Hug your kids tight tonight and let them know you love them.  Life is so fragile and we are not promised tomorrow. 

Our Week

Junior continues to recover from the seizures and has had a low grade fever off and on since then.  He had labs drawn yesterday so tomorrow morning we will have some answers.  Hopefully it is a response to the continued crazy weather and the seizures but he may have something else going on.  He has also been very quiet with only small smiles. 
Watching tv today, you can tell he isn't feeling all that good.

Every so often Junior's medical supplies need to be organized.  I have been working on that this week.  I know I may sound a bit nutty but it makes me so happy to see everything all neat and organized.  This is Junior's closet.  

 Junior's main medical supply shelves. 

Please keep Junior in your prayers.  Another storm is moving in tomorrow and we sure don't want anymore seizures.