Sewing

Junior wanted to help me with some sewing today so we hooked up his head switch so he could run the machine.  He loves to sew and especially loves being in control.  Today he thought it was very funny to suddenly stop the machine then he would start if for a second then stop it right away.  Of course he would then laugh and give me the "who me" look.  Love his personality and spunk. 

  

  

Clicking his switch to turn on the machine

 

 Holding the cloths he already finished.

  

Last night I did surgery on this fluffy cow so it could take lots of hugs and love to ^Pauli's^ family.  I will share more about it later but for now here are a couple pictures of the tubie buddy.  

^Pauli's^ mom told us that a couple of his favorite toys were a cow and a purple dinosaur.  He used a nebulizer often so I thought this purple dino nebby mask was perfect for his memory buddy.  

A Couple Rough Days

After a fantastic day on Wednesday the wind moved in on Thursday and the field around the corner from us was harvested.  Junior's asthma got bad and then he had a low grade fever.  He had two very rough days but today was 100% better.  He is worn out after two days of asthma but feeling so much better. 

Awhile back I ordered some feeding tube pads for Junior  and today the gal who makes them shared a picture of them with us on Facebook.  Junior was so excited to see the picture and now can't wait for them to arrive.  

  

You can't see it in the pic but his new button pads are camo and star wars.

This evening I did surgery on this little kitty cat.  He now has a feeding tube and is ready to take lots of love, hugs, and snuggles to ^Kemmer's^ family.  Forever in our hearts

Please keep Abigail(my niece and Junior's best bud) in your prayers.  I am not able to share specifics but she is going through a very difficult time.  This situation is not of her making and I am so proud of how she is handling things.  We love you Abby. 

Bike Rides, Snow, and Switch Fun

We are are loving the sunshine and though Junior's asthma is acting up a bit it is certainly not keeping him down. 
Yesterday morning we headed out for a bike ride. Junior was full of energy and having a blast.

Then it was stander time and after some school work he played in the snow. 

Snow is cool but snow on the light board is even better(in Junior's opinion everything is better on the light board)

  

Later Junior played with his truck using his hand switch.  As his arm motion has increased we have been encouraging him to use his hand switch more often(usually he does everything with his head switch).  Generally he stiffens his arm to activate it.  Sunday I was on the phone and turned around to see Junior reaching his arm toward me(he wanted to talk to grandma on the phone).  Actually lifting and reaching it forward, a major step.  So I decided to change where I put his hand switch to  encourage him to work on this reaching motion. 

I put the switch in his lap on a folded blanket.  Just that little bit of lift from the blanket means that stiffening his arm will just push the blanket back.  To activate the switch he will have to lift his hand first before pushing.  

It took all his focus and energy but he did it a couple times and he was oh so proud of himself(I was so proud of him as well).  That is his oxygen monitor probe on his hand(he has a new velcro wrap to prevent the marks that tape makes)

This morning Junior's asthma was again acting up but he wanted to go outside so bad.  I knew his asthma was going to act up even if we stayed in so we decided to go out for a bike ride.  I strapped the oxygen to the back of his bike and off we went.  As  you can see he had a fantastic time and loved every minute of it.  

Happy Mother's Day

Enjoying the Sunshine

Junior loves being outside so this is definitely his idea of a perfect time.  I would have to agree with him, nothing better then relaxing and reading a book with my boy.

  

 Awhile back we started reading the Hardy Boys books and Junior is loving them.     These are books that I read as a kid so I am enjoying reading them to Junior.  They bring back so many wonderful childhood memories. 

  

We have read a few and I thought we had read the first one but we hadn't.

Moments That Make My Heart Smile

These are the moments that make my heart smile and remind me how blessed I am

 

I thank the Lord daily for placing these two in my life and for the joy that shines through them. 


 

Squirt Guns, Paint, & Smiles

The weather is heating up and summer is on its way in.  Around here summer is our favorite time of year, the heat means allergies/asthma and weather change reactions go away for awhile(at least for the most part).
We are still having to be careful with outdoor time because of the pollen but are starting to be able to spend more time outside.

This morning Junior was energetic and wanted to use his squirt guns for some art work. 
Thankfully we decided to do this outside because to say we made a mess would be an understatement.  One of those times when the mess is oh so very worth it.

first we had to load the squirt guns with paint(having medical supplies around comes in handy)

 All set up and ready to paint, we learned the hard way that you need to put the paper further away as well as move further away from the house.  We caught it before we got too much paint an anything and got it cleaned off before it dried.  We readjusted things and then could have some fun and not worry that the splatters were coating everything in rainbow colors. 

  

We added the sweat bands so Junior could hold the squirt gun easier and it kept him from pinching his fingers when I was helping him shoot the gun. 

The finished artwork before we took it down to dry(he actually did 2 of them). I love all the bright colors

Junior decided he wasn't finished painting so we got out his water yo-yos.  We always call the yo-yo artwork his fireworks. 

This afternoon after Junior's squirt gun painting was dry he thought he needed to take a closer look at it.  I think he is pleased.

Appointments, Friends, and a Huge Thank You

Today Junior started the day by giving me a piece of his mind when I dared wake him up early.  Such a teenager, wants to stay up late and sleep in late.

He saw the neurologist first and it was so nice to hear the doctor say how good Junior looks and how happy he was with how things are going.  .
Then it was on to the GI doctor and she is also pleased with how he is doing.  Great to have such positive appointments.

The "I am not a morning person" face

   

Feeling more awake and enjoying some Scooby-Doo while waiting for the doctor

  

Junior's little friend Bella had an appointment with the neuro also so it was great to get to visit.  Bella is such a sweetie and her mom is pretty amazing as well.   

Last year we were blessed by being given the gift of going to Joni and Friend's Family Retreat.  It was an amazing experience which blessed us in a huge way.  We left feeling rejuvenated and like we had experienced a little piece of heaven here on earth.    We are forever grateful to those who made it possible. 
Camp is not cheap so we were not expecting to be able to go again.  At Christmas I received a call from a dear friend who told us she knew how much camp had meant to Junior and I.  She then told me she and her family wanted to bless us with the Christmas gift of making sure we could attend camp this year.  Wow, I was touched beyond words at their generosity and could never express what this means to us.
I had waited to tell Junior until it got closer to be sure it was looking like his health would  be stable enough to attend.  I recently asked him if he thought he might like to go to camp again this year.  After giving me the "are you crazy" face, I was emphatically told "ya, ya, ya".  He is so excited and so am I, we will be off to camp in just a few weeks.  Thank you, thank you for making this possible(you know who you are), we love you guys and have been blessed by your friendship.

Strawberries, Yummmm

Junior is on the mend and hopefully will be back to his happy energetic self in a few more days.

This morning my sister's husband brought these by the house for me.  Yummy, one of my very favorite things.  No birthday is complete without some strawberries for a strawberry pie.
 

Later today Abigail, my sis, and her hubby came over. 
Junior and Abigail being silly.

I had made strawberry pie without the crust and Mellisa made chocolate brownies.  A perfect mix and soooo yummy.    Even with Junior not feeling good I had a very nice birthday and feel so very blessed.    Here is what happens when you let Abigail get a hold of the camera.

Hugs from my boy, the perfect birthday gift.

Not Feeling Well

So far today has been fever free but Junior is still not feeling well.  He has added some asthma to his virus which makes things tough.  Extra treatments, naps, and of course lots of movies have been the schedule for today.  Junior wanted to watch Transformers cartoons all morning and this afternoon he has had a MacGuyver marathon.
Watching his shows and looking very drowsey

No matter how bad he feels Junior always finds something to smile about.  Too bad we aren't all like that.

Fever

Junior has been quiet and "off" today.  This evening we found out why when he started running a fever.  After hearing his symptoms his doctor thinks it is most likely a virus so we will keep an eye on him and see how the weekend goes.  So far he is needing a bit of oxygen but his lungs are okay. 
Please pray that this passes quickly and stays out of his lungs. 

What Happened to the Sunshine

After a beautiful day on Monday the clouds rolled in and we have needed to stay in the rest of the week.  The wind and clouds have made for some asthma and lots of sinus headaches but Junior's lungs have done better then usual.  The IPV is making a very obvious difference in his oxygen levels during times like this.  Even with asthma he has only needed a small amount of oxygen 2 evenings and once he was on bipap for the night I was able to turn the oxygen off.  His oxygen levels have been staying 95 and above on room air during the day and considering the asthma this is amazing and totally unheard of.  Yesterday I actually made a phone call I never thought I would be making.  I called his pulmo to get the okay to decrease the  number of daily treatments we are doing.  Yes, I said decrease, amazing!!! 

Last night he had a tough time and was up most the night.  His lungs were fine but the sinus pressure from the weather made him very uncomfortable in his bipap.  Today he has been sleepy and a bit cranky but okay.  He had a mild seizure which I had expected with such a drastic weather change.  Surprisingly he recovered with some time on bipap about about an hour on 2 liters of oxygen(usually after a seizure he needs bipap, a full set of treatments and 8 liters of oxygen for a couple hours or more).  He is now back on room air, oxygen levels are perfect and he is watching his shows.  Funny how I keep stopping and doing a double take when I see numbers like 98% on his oxygen monitor with him on room air.   Just not used to seeing such awesome numbers from him, woohoo. 

napping on bipap following his seizure. 

Please keep Abigail(my niece and Junior's best buddy, the girl you see in so many pictures) in your prayers.  I can't go into what is going on but she is under a huge amount of stress.  She is in a tough situation which she has no control over.
She will be back at her mom's this weekend and Junior can't wait to hang out with her.