12 Years

Tomorrow is the 12th anniversary of when the sweetest little 2 year old came to live with me. It is such a privilege to care for him and I am so very blessed. Some ups, downs, and bumps along the way but also many smiles and so much joy, I wouldn't trade a single moment of this journey for anything. Even on the hardest of days Junior finds something to smile about, a hero in the truest sense. I love you Junior and am so very proud of you. Keep on smiling.

Hard to believe Junior is 14, my how he has grown.  Then and now pics, he has  his yearly traditional balloon.  He picked it out himself this year and thinks it is so funny.

  

A few more of the "through the years" pics I have been sharing on my fb page.  

These pictures are from Junior's first big trip in 2005(he was 6).  We were in NC visiting my parents and saying our goodbyes to my papa who had been very ill and was transferred to hospice.  It was so special to get to spend time with papa and have him meet Junior.  

Junior loved flying on the airplane and all the activities during our trip. He especially loved being the center of attention and getting totally spoiled.

 While we were in NC my dad, who is a preacher, baptized Junior.  The pics of Junior in his suit are from that Sunday(it was also Easter).  A truly blessed experience and I don't think there was a dry eye in the church after my dad talked a bit about Junior and baptized him.  Very precious memories. 

 Junior's aunt and cousins were at a military base not too far from where my parents live so it was great to get to see them.  Junior enjoyed hanging out with all of them.

 This trip is where Junior's love for all things to do with firefighting comes from.  My brother David is a fireman and took us on a tour of the firehouse. He also took Junior up into the truck and showed him everything. 

Abigail had her knee surgery early this morning and it went smoothly.  She was home in the early afternoon.  Junior and I went by to see her but she was sound asleep.  

Junior was so excited to take her the balloon he had picked out and a snack basket from grandma and papa.  Please pray that she will have a quick recovery with not too much pain. We did get to video chat with her later this afternoon and she is in some pain but doing okay. 

Junior saw the endocrine doctor this morning and it went very well.  So nice to have a great appointment with all good news.  His sodium has stabilized and has been within normal limits for several months now. 

 

Happy Memorial Day

Hope everyone had a nice Memorial Day.  We are so thankful to all those who have lost their lives fighting for our freedoms as well as those who continue to serve in the military.  God bless America.

The weather is crazy so Junior hasn't been up to much today.  He is a happy guy just sleepy and congested.
Here is mr. happy today.  That is his latest moonsand castle.  Doesn't every castle have a ninja turtle and space men. 

Please keep Abigail in your prayers tomorrow.  She has her knee surgery first thing in the morning.

Falling Behind

I can't believe I haven't posted all week.  Things have been busy and I just haven't gotten to it.
Junior is doing pretty good and is slowly regaining his energy and wanting to do more.  We are taking it very slowly and not pushing things, I want him healthy and back to his energetic self before camp starts. Today we were in Sacramento for the morning having Junior's GJ tube(feeding tube) changed.  Since it is a GJ tube it has to be done in radiology so they can be sure it is placed properly. 

Now for a few pics from our week. 
These first pics are from Tuesday evening.  I finally got around to taking his medical cart apart and replacing the broken parts. A good thing I did because the plastic "sleeves" holding the top shelf locked in place basically crumbled when I was taking it apart.  While the cart was taken apart and empty  I took the chance to give it a good scrub and then gave his machines all an extra good cleaning before putting them back on the cart. Junior thought it was all quite entertaining and laughed at me the whole time. 

Wednesday we were so excited when Junior's medication arrived.  This is the mucomyst that we have been desperately trying to get our hands on.  Thank you Lord for providing. 
Now for all you crafty parents out there I am trying to figure out what I could use all those little vials for once they are empty.  They are heavy duty and about the size of a small chapstick container.  The top seals and can be taken off and on.  I keep thinking there has to be something I can use them for instead of just tossing them. 

  

Junior's new and larger lift slings finally arrived.  His old ones are too small but these are pretty big.  I had to add a pillow to make it work better for him.  As you can see he doesn't mind a bit and loves his "roller coaster ride". 

 This is after we got home from having his tube changed today.  He was tired but also one very happy guy.

This next week is the 12th anniversary of when Junior became part of my family.  I am so blessed.  On fb I have been sharing some pictures "through the years" so thought I would post a few of them here as well. It is so neat to look back through all the old photos and Junior loves looking at the pics as well.
2001, Junior was 2 and 3 in these pictures.

 2002 age 3-4

 2003 age 4-5

 

 Both Junior and Abigail were huge Wiggles fans when they were little.  These pictures are from a live Wiggles concert in February of 2003.

 2004 age 5-6

Our Weekend

Saturday Junior was raring to go.  The weather was nice and he had, had just about enough of being stuck inside for the winter.  We picked up Abigail and headed to our favorite shopping center.  We wandered around the stores and just enjoyed being out.
Junior was so excited and his eyes were sparkling.  His huge smile seldom left his face, one very happy guy.

One of our favorite stores is World Market.  It is on the pricey side so we rarely ever buy anything but it has so much neat stuff to look at.  I was looking at things and Abigail came running over to tell me she found Cheerwine.  This is a soda with a flavor similar to Dr. Pepper.  It is only sold in certain areas on the east coast and it is my favorite soda.  So our big buy for the day was a couple bottles of Cheerwine, yummy.

 Sunday Junior was again quite energetic and his lungs were sounding good.  We got up and headed to church.  It has been months since we have been able to attend and it was so nice to be there.  Junior loved it and did so well.  Aside from a few coughs he had no troubles and his oxygen levels stayed great on just room air.  Here he is ready for church.

When we got home he needed some treatments and a little rest but then it was stander time.  Riding in his lift or as Junior thinks of it his personal roller coaster.

 

 He had me laughing when I put him in his stander.  He promptly gave me his grouchy, sleepy face.  He didn't think he should have to get in his stander on a Sunday. 

Today he is tired after the busy weekend and there are clouds moving in along with wind.  I have just let him sleep in and am praying the weather doesn't cause too much trouble. 

Whats For Dinner

I love all the fresh fruits and veggies that are starting to become available as the weather warms up.
It is great to know Junior is getting all that healthy goodness in his feeding tube instead of the corn syrup and oil filled formula.
I took a few pictures tonight as I was making his dinner so I could share the steps to get it from the plate to his feeding tube.

Tonight he is having a grilled turkey burger, quinoa, and various fresh vegetables. I generally fix 2 meals at a time and one goes in the freezer for another day.  Junior doesn't get much meat so that turkey burger is two meals worth. 

 Everything in the blender, the green on top is an avocado.  I added pedialyte tonight to thin his blend.  Sometimes we use nut milks, or rice milk(which I usually use pedialyte to make) but because of his sodium issue we don't use plain water.

 Straining his mix, Junior's blend goes through his feeding pump and into his J tube so this is a necessary part of fixing his meals and I actually run it through the strainer twice.

 Ready to be poured into his feeding bag.

Dinner time, this will run overnight so will have a large ice brick with it inside the insulated bag. 
 
 Still amazes me that the blender can take it from right off the plate to ready for the feeding bag with such little effort.  We love our blendtech blender.

  

We have a stationary suction machine next to Junior's bed.  The canister for this machine is right out in the open and for those not used to it, it can be pretty nasty to see.  I finally had a few minutes to work on making some covers tonight.  This is my first one and is my test pattern.  The part around the canister came out the right size but I need to make it shorter.  I just used scrap material to figure out how I was going to make them but Junior wants some camo covers. 

Treatment Time

Junior decided that monkey needed a vest treatment with him today. 

We had some wind today so Junior had a little asthma trouble this morning but otherwise is having a good day.  He ran some errands with me this afternoon and loves being able to get out some now that flu season is over.  Tomorrow if all goes well Abigail is going with us for a short outing which should be fun.  We then hope to even make it to church tomorrow evening.  Seems strange to go to church on Saturday but it is usually just too hard to get there Sunday morning(mornings are typically his more congested time of day) so better Saturday then not at all. 
Hope everyone has a great weekend.

Pulmonology Appointment

Today was Junior's regular follow up, pulmo appointment.  He sees the lung doctor every 3-6 months depending on how things are going. 
I had a whole list of things to discuss with our doc and ended up spending close to an hour going over it all.  The IPV was near the top of the list since we desperately need a working machine and also the issue with getting a company to provide suction supplies.  They will be making some calls to figure out what the hold up is and what they can do to make things happen and get Junior what he needs. 
Just yesterday I posted about being unable to get the much needed mucomyst medication.  Well last night a friend called and gave me the number for a specialty compounding pharmacy and suggested I see if maybe they could make the med we need.  It was a long shot but I gave them a call and was told yes, they could make it for us.  Today I was able to talk to the pulmo about this and they are sending over all the information to see if we can indeed make this work and get the medication he so needs.  Please pray, this would be a huge blessing and help Junior so much.
We came home with some different nasal sprays to try since she can tell that some of what we are dealing with is coming from his sinuses.  We discussed several things that were concerning me and I feel so much better knowing we are all on the same page about everything.
While we were there the nurse came in with the cutest little bear for Junior.  Usually being given a teddy bear is something Junior would find insulting since he is a "big guy".  This bear has an airway vest on just like Junior uses and that changed everything, he thought it was very cool.  

On the way home we needed to stop at Walmart pharmacy for meds and lets just say Walmart and Junior don't get along.  He has always hated going to walmart.  I warned him ahead of time that we needed to stop and I know he doesn't like going in but needs to behave for me.  He agreed to not complain and then did great, I was very proud of him for handling it so well when I know how much he doesn't like being there(I think it is the noise and lights, he does better when he keeps his sunglasses on inside).  He did like it when the pharmacy folks stopped and came over to say hi and let him know how happy they were to see him.  We also stopped in the fabric section to see what remnants they had(yep I love a good deal), I need to make suction canister covers for the machine in his bedroom.  Junior was pretty excited when I found remnants in Avengers material and camo.

Please pray for our buddy Matthew and his family.  He is very sick and had to be intubated this evening.  Such a sweet little guy with a beautiful smile. 

Another Birthday & Other Things From Our Week

This is a busy birthday month.  From April 13th to May 14th we have 5 birthdays in our family. 
Today is my fantastic Dad's birthday.  Happy Birthday Dad, hope you have a wonderful day, we love you. I am so thankful to have been raised by Godly parents who were so involved in our lives. 

 

It is very frustrating to know what Junior needs to help with the plugs and thick secretions but be able to do nothing about it.  For several years he was on a medication called mucomyst(acetylcystein) and the horrible issue with plugs in his lungs disappeared.  This past November the manufacturer stopped making it.  We had some extra on hand so were able to keep him on it for awhile but finally had to stop it.  His doctor started him on a different med and though it helped some it was not nearly as effective.  Junior did okay for awhile but then an illness triggered the thick secretions to start back and since then we have been fighting them.  This past week while organizing medical supplies I came upon several boxes of the mucomyst.  Awhile back the strength had been changed and I had saved what was left of the old strength. I was overjoyed to find it and quickly checked the expiration date, every bottle is still good.  It is only about a months worth but I pray it gets things back under control and then he will be okay during the summer months when Junior typically has the least trouble with his lungs.   Please pray that this medication starts being made again, it makes such a huge difference in Junior's health and being without it is causing such a drastic difference (how can a company stop making something that will affect those who need it so badly).  He has been back on the medication for 5 days now and today he has had no plugs and his secretions are much thinner and easier for him to clear.  He was finally able to be on almost no oxygen(1/12th of a liter) and his levels were 99, he only remained on it at all because we were out and it is harder to monitor his levels closely. 

Today we spent much of the day at Shriners where Junior was being fitted for his new AFOs.  His awesome orthotist put the new braces on him to check the fit then went and trimmed them so they are just right.  They fit Junior perfect and when we got home and I removed them there were no marks or bruises, yeah!!!  After our appointment we met our friend Kim for a visit which was so nice.  Junior loves seeing Kim and even cried on the way home when we had to leave. 
Here he is being silly at Shriners.  He thought it was very funny to close his eyes for the pics or look away. 

When we got home from the appointment there was a package waiting for Junior.  A very special t-shirt to support team B as they raise money for the March of Dimes.  Though they never met Junior thought of B as his buddy and loved seeing his pictures on fb and sending him notes and cards in the mail.    They each had a tubie buddy and thought they needed to have a play date one of these days. These two truly had a special friendship even if it wasn't in person.
Sadly B is now in heaven and will be missed. 
 Junior is very excited to wear his new t-shirt in memory of his buddy. 

 

Happy Mother's Day

Happy Mother's Day to my amazing mom, we love you

This afternoon Abby was here for a little while and called for me to come over by Junior.  She had set up a board on his ipad.  She held it up for him and asked him what he wanted to tell me.
He told me "Heidi, Happy Mother's Day, I love you".  Yes, that would be the best Mother's day gift ever. 

It has been a tough week and yesterday we decided it was time to see the doctor.  We discussed what he has been doing, the coughing, extra congestion, and oxygen level drops.  He then proceeded to show off and drop his oxygen levels while in the office.  She gave him a careful check and though his breathing sounded loud and gunky, once she used a stethoscope and listened to his lungs they didn't sound bad.  We were all surprised that they sound so good and she said the gunk is in his upper airways.  With the oxygen level dip she decided it was best to go ahead with a chest x-ray to be on the safe side.  After the x-ray we headed home and about an hour later I got a call from the office and the x-ray was fine.  A relief to know that we aren't missing something.  Since we know that, we also know that this is just something we need to work through.  Could be a virus along with his allergies. So lots of aggressive treatments, some extra bipap, and of course movies and snuggles.

He came  home from the appointment and promptly wanted to be put in his bed to watch tv.  A couple minutes later he was sound asleep and didn't even wake up when I put on his bipap.  Abby stopped by after school and had to give him a quick hug before she went home.  Even that didn't wake him up.

 Yesterday evening he woke up and had a great big smile on his face.  No matter how tough things are Junior always finds a reason to smile.  I wish we all had that attitude about life.  My hero.

I had been talking to a friend about how I would like to have an iv pole for Junior's feeding pump attached to his medical cart.  I mentioned how I had been looking but everything that might work was too expensive.  She told me to make something, lol, why I hadn't thought of trying that, I don't know.
Junior has two regular IV poles so I took the legs off of one of them.  I then was messing with his cart and discovered it has hollow legs.  I popped the plastic cap off one of the legs and then worked on a way to secure the iv pole.  I put a strip of foam on one side of the iv pole and wrapped it in duct tape.  I then slid it into the leg on the cart.  With the foam it is very snug and secure and can't move at all.  It works perfect and no longer having the regular IV pole by his bed saves a lot of room(the legs stick out quite a bit). 

Today has been very busy and I didn't even take any pics the whole day, gasp, I know, who would think a no picture day even possible.
My sis came by this morning to hang out with Junior so I could run get groceries.  Abigail came along with me to help so we could get it done quick.  Then it was home for lunch and then to work on some house cleaning.  The deep scrubbing kind of cleaning.  I was even pulling out my fridge to clean under and behind it, ewww, it hadn't been done in awhile. Still lots more to do but it was a start.
Junior is a little better today with less bipap time needed and a few more smiles. Praying he will be back to his smiling, energetic self very soon. 

Crazy Weather

The last few days we have had some strange weather.  It went from 90s to cool and very cloudy.
Days like this are tough on Junior, they kick his asthma into high gear and also cause headaches.  Today actually hasn't been too bad for him, a few tears but once I gave him some Tylenol he was fine. Yesterday was harder and he had lots of congestion and an increased oxygen need.

Abigail stopped by to say hi and get hugs after school yesterday.  It was my birthday so I got a hug and some ice cream cake, yummy. 

 A sleepy kid getting his treatments today.

It was so nice to get a call and know that most of the supply issues are now worked out.  Still waiting to get the final on his suction supplies but thanks to some other families we have enough supplies to hold us until it is all worked out.  Our biggest frustration now is his IPV machine.  The provider that it came from gave us an old rental and assured us that once we had, had it a year it would be replaced by a new one(something I had repeatedly questioned them about).  Well it is not working correctly, something they were aware of and told us they couldn't fix until the year was up.  That year was up in April and I have been trying to get this figured out since.  Today I finally at least got some straight answers.  Today I was told that we now own this big, old rental machine, no new machine will be coming, and since we now own it they won't fix it.  They informed me that insurance will pay for a new one but since they no longer contract with Junior's insurance we will have to find some place else to get a new machine.  Wow, talk about feeling like you have been taken advantage of.  I should not have trusted them and should have demanded they fix the machine prior to the year being up(it is still functioning but we have to do short treatments), I will be filing a complaint since I feel this was wrong and misleading.  The biggest problem now is that though insurance may cover the machine the IPV is not something that is easy to find.  Very few companies are willing to provide it and I hit all dead ends today when I made phone calls.  The old vendor was not at all helpful and gave us no help in who we should transfer to.  I contacted the manufacturer and was relieved to find them very helpful.  They are going to contact local vendors to try and find someone for us to work with. 
Who knew having a company drop the contract with our insurance so we had to find new suppliers would be such a mess. 
Trying to think of the positives in all this and there are several. One being that the various companies I have now found to supply his respiratory items have so far been great to work with.  They are going out of their way to keep us informed about the progress and get things to us quickly.  Most importantly Junior currently has what he needs and everything else we can deal with one step at a time.

I have been working on giving things a slightly less "medical" look for Junior.  His room looks much like a hospital room with all the medical equipment and supplies.  We can't change much but I am working to make it look more Junior friendly and less hospital.  I got a discount coupon so was excited to be able to get Junior a camo "skin" for his vest machine.  He also has a fire truck complete with rolling wheels and working ladder that is also a nebulizer.  I am thinking about trying to design some very easy to remove covers for a few of his other machines. That would keep dust off as well as make them look cool when not in use.  Has anyone every made a cover for a stationary suction machine canister.  I would love to figure out how to cover the canister which collects what we suction out of Junior's lungs.   Junior loves what I have figured out so far and is so excited to have his vest machine camo just like the vest part that he wears for his treatment.

Weekend Fun

Abigail came over last night and brought dinner.  She was going to take me out for an early birthday dinner but the air quality is crummy so Junior wasn't up to it(or I should say his lungs weren't up to it, he thought we should go and was quite disappointed when we didn't). 
Dinner was great and she even brought me my favorite drink from Juice It Up(a peach freeze) for dessert.  Thank you for the awesome meal Abby.
Junior decided it was the perfect time to nap while we were eating dinner.

Then there was plenty of silliness going on.

 During Junior's evening postural drainage time I usually read to him.  Abby grabbed the camera and took some pics during our reading time.  Junior was very tired so no smiles but he loves to be read to.  We always end with a chapter from his latest Hardy Boys book which is his favorite. 

Today we were watching a movie and Junior thought Abigail was far more entertaining then the movie.

Giggling at Abby today, I love hearing his giggles and seeing his great big smile.

A big thank you to my sis and her hubby who dropped by a cake and pizza for me even though my sis was sick so they couldn't stay.  Love you guys.

Ninja Castle

Junior wanted to play in his moon sand again yesterday. He had me laughing when the first thing he did was finish flattening the tower he had knocked over yesterday. 
He was in quite the goofy mood and would turn his head and start laughing whenever he saw me grab the camera. 

  

I jumped around quickly and snapped a pic before he got his head turned. 

Then it was time for some walking and Junior still thought it was sooooo funny to refuse to look at the camera. 
 
After taking off his AFOs(ankle braces) I discovered he had quite a bruise popping up.  The orthotist adjusted these to get us through until his new ones arrive but it looks like these are done.  I hate to have him unable to use his stander for a couple weeks but sure can't have him getting bad bruises from the braces.  At least he can still be on his feet in the standing sling because we can adjust the amount of weight he is putting on his legs.  Lots of stretching and more standing sling time for a couple weeks, actually Junior will most likely be very pleased about the situation.

The air quality today is crummy.  There are fires burning in several parts of California and though none are real close they are still affecting our air.  Junior is in a great mood and very happy but is also very congested and his hear rate is staying elevated.  Both signs that he is having asthma/breathing troubles from the air quality.

Happy Birthday

This is a day late but Happy Birthday to my amazing mom.  We love you.

Yesterday evening Junior was feeling a little more energetic(this wind is making things tough) and wanted to play in the moon sand.  He decided he needed a castle/fort for his ninja turtle.  He was in one of his independent moods and kept fussing at me for helping too much.  After we were finished building he little by little worked very hard to get his arm moved over next to the tallest tower.  He then proceeded to knock it down and was very proud of himself. 

 The tower after he knocked it down. He pushed his arm into it then pulled back and thought it was great when he accomplished what he was trying to do and pulled it down.  Not sure but I suspect he was a little upset with me for building that specific tower without his help.