The Picture Book.......

The past few weeks have been very busy. We've made tons of memories and the weeks have been packed with loads of fun and the best part....

Jophie has felt well! :0)


Because I've gotten so behind on all the happenings around here and due to my very limited time, I thought I'd catch ya'll up with our very own Picture Book with captions! I did leave out one very important event however, because of the impact it had on us, I wanted to share that story in a post all by itself. So, keep your eyes open and watch for the story about
"Our Unexpected Retreat" :0)

For now here's us for the the past few weeks!

Enjoy!

Big Sandys Arrival with the bulk of Jophies Make A Wish Goodies...

Big Sandy Corporate Office made the banner you see on the back of the truck for him to keep.

Big Sandy Managers and Delivery Dudes

Big Sandy Managers and Jophies thoughts on the matter

Installer Dudes

Big Sandy Brought Balloons! LOTS of them and each bouquet is attached to the cutest Stuffed Snowman! :0)

I just liked this picture that Jophies Aide Katy took! :0)

Big comfy, smooshy Theatre chairs

The Theatre and YEP! Its The Waltons! LOL

Jophies first look at his Big Screen

Make a Wish delivers the rest of his Wish and here's Jophie with the "Local" MAW lady Pat. At this point he was getting uncomfortable and needing to lie down....See how hes arching and pushing back?

OK lady...Just give me the goods and BE GONE...LOL

Lots of Movies and his MAW T-shirt and Badge

The Cotton Candy Machine

He also got 5 authentic Movie Posters! They are so coool and we look forward to hanging those once we can find some affordable framing. And so the Frame hunt continues! :0)

Is she gone yet?

Ahhh...Finally...Sweet Slumber:0)

Watchin "The Jungle Book" AND So many decisions!

Watching "The Movie"

Watching "The Christmas Tree"

The Movie wins this day :0)

The Jungle book IS FUNNY!

And has good music...La La La La

Ohhh....Kaa is a scarrrry snake. Don't eat Mowgli!

No Worries though! Mowgli just bops ole Kaa on the head! BOINK! Do it again Mowgli! That was funny!

Big comfy chairs are also good for sleeping :0)

Alot

And now A lesson on "How to eat Cotton Candy"

This may take some time to figure out :0)

OK so I have it the right direction now

Smells Strangely familiar

Tastes strangely familiar

This might just be a good thing

It's" coming back to me!

Oh yea Baby!

This sure is hard work...I think I need a little nap

But its just so good...

Ah me thinks the sugar is giving me my second wind!

This just might require 2 hands!

This is the life!

Thank you Mommy :0)

And Thank you Make A Wish!

The Big Smooshy Chairs are also good for takin great pictures because my new Smooshy chairs keep me from falling over :0)

Merry Christmas!

And last but not least....

My cute little Christmas PiggyToes! :0)

And that my dear family and friends has been us for the past few weeks :0)

Lets....Go To....The Movies......

Today is THE DAY!

The installers will be here between 11 and 12 p.m.......We are all so excited for Jophie! At the moment he's managed to giggle himself to sleep while staring at his lights we've got strung in his bed. He does LOVE those lights :0)

Jophie continues to do well. I can't even begin to express how thankful I am. There are honestly no words to describe this feeling. It's just wonderful seeing his smile replaced by those grimaces of pain.

Jophie still has his bad days but as for now he seems fairly stable aside from a little bump on the bum. The little guy is dealing with some sort of vascular growth on his little tooshy. I have no clue what it might be but because of its rapid growth he's going to have to see Sherrie. I hate taking him in that germy office when he's feeling so well respiratory wise. Please pray this little bump is nothing and that those germies stay clean away from my sweet boy!

I still have loads to tell and catch you up on but for now this momma needs to hit the sack. It's almost 4:30 a.m. which means it will still most likely be 5 before I actually lie my sleepy head down.

Oh and to boot! I found out that the media is in fact going to be here along with the installers. Ack! I wasn't expecting them till a later date. Needless to say I've been in scramble mode this evening and into the night.

OK gotta scoot. It's time to hook Jophie up to his water infusion for the night.

Once again I'm thanking you for your persistance as you faithfully approach the throne in Jophies behalf.

Will update with all the Theatre details including Pics!!

Jophies Night out.........

We don't get out too often
Jophie and I....

Most of our outings entail a visit to the doctor, medical procedures/tests or worse hospitalization but thankfully this trip involved none of the above.

Jophie had been having a really good day Thursday. He was sooo chilled. All vitals looked good and he was full of smiles all day. We had been preparing ALL DAY because well thats what you have to do if you go anywhere with Jophie.

This is NOT an easy task

• Hair was washed



• Bath was done



• Clothes were laying out



• Meds and Food had been given



• He was napping peacefully



• Oxgyen Tanks were swapped out for full ones



• Suction tubing was changed and then packed



• Pulse Oximeter was packed



• Nebulizer was Packed

By evening I was preparing his evening medications/feeding/Water infusion/tubing/syringes so this could all be placed in a small cooler. I also packed some emergency meds to cover all possible complications while we were out. Now all that was left for me to do was shower and wait for Tammy(dear friend/nurse) to arrive at 7 p.m.

You truly never know what to expect when planning/traveling with Jophie. There are always surprises around the corner so needless to say I was a bit edgy. I wanted this to be a fun, relaxing trip for him. More than you know.

Tammy arrived and we got him ready. We started out the door and he started. Stridor, agitation and then a full blown asthma attack! I almost said "forget it"

I'm so glad I didn't! :0)

The Destination:

Big Sandy Super Store

The Purpose:

To pick out the larger portion of Jophies Wish. You see we had to take Jophie and let him actually sit in the theatre seats to see what would work best for him because of his back and limited ability to sit unassisted plus, we had to let him look at the tv screens to see which one he could see.

Jennifer(Jophies Wish Rep) had arranged in advance with Debbie(the manager) to meet after closing time. I was so thankful they were able to accomodate us.

When we arrived I had Tammy start Jophies meds while I went in and spoke with Debbie. It seems she has 2 family members that are immune compromised so she was very aware of the dangers to Jophie. She was indeed prepared for us! She sent everyone home except 2 employees who were very healthy. I can't express enough how much I appreciated them taking such precautionary measures.

And then she says:

"Jennifer said to pick whatever you want."

Be still my heart...Did I just hear what I think I did??!

I went back outside to pull the van closer to the front door and to begin unloading Jophie. This was a bit traumatic for Jophie as we were sitting at an angle which in turn caused us to transfer Jophie rougher than what we like. Can I just say I HATE our lack of safe/convenient/efficient transportation and or transfering of Jophie from van to chair. He always seems to get hurt and it just KILLS me!

By this time I was even more worried that this trip had been a mistake. UNTIL.....

We walked through those doors and let me tell you....I have no clue what it was about this place but he immediately calmed down. In fact you would have thought we had brought him to an amusement park. He was so fascinated by Big Sandy. How funny is that??!

Let me just show you how much so.....

Jophie seeing the Big Screen for the first time.

This was so cute! His mouth gaped open and staring like he was seeing aliens.

Take me to your leader! LOL

He sat like this for the longest time just staring and the best part.....It was a football game! Ah yes he is his mommas boy! :0)

Well alrighty then I guess he's chosen his tv. That was easy so lets move on to the next phase.

We headed towards the Theatre/Surround Sound packages and as we turn the corner........Everywhere you can see there are TV's! Rows and Rows of them.....

ON. HIS. LEVEL.

This was even more adorable! He had this look like......"OK can I have a wall like this at home" He just kept looking from one tv to another. Thank God they had the same thing playing on every channel or I think it woulda pushed him over the edge with so many choices! LOL

While he continued to drool literally over his newly discovered love for electronics, I stood off to the side and was just bursting with pride at my boy who clearly LOVES all things electronic as much as his momma. He's just like me folks and I LOVE it! :0)

OK next came the Theatre/Surround Sound package. The sales rep cranks up the sound and I kid you not.....Jophie was shakin in his chair and I looked like I had ants in my pants. He kept lookin around like Wow! "What kinda ride is this?" And ya know what....I could see in my boys eyes that he was growing to love this place even more.

Once we had all the electronics squared away we had to pick some seating. The theare seats were nice BUT, they were too big as in wide. The arm rests were pretty much non-existance which meant Jophie would have no support sitting up. Just when I thought all hope was lost I turned a corner and saw....

"The chair"

A chair like no other! This was a big ole' smoooooshy/marshmellowy/leather chair. Oh I just had a feeling. My gut was telling me this was the chair. The true test would be when we sat Jophie in it.

Need I say more??

Literally 1 minute and he was asleep. No Kiddin!

THEN I look over and see this:

All righty then! He's chosen his chair! This chair even goes all the way back like a bed and the best part is his back just sinks back into that leather and it doesn't hurt him. He's gonna love it!

As we were leaving we caught him peeking at his tv again. How cute is that?? All and All it was a productive and fun evening. The only thing left to find is theatre drapes, lighting and a cotton candy machine. I'll get right on that Monday.

And if by chance your sitting there thinking how weird we are for liking a trip to Big Sandy. It's OK. Really. I suppose we are weird and ya know what? I wouldn't mind calling up our new friend Debbie to see about spending another fun filled evening(after hours of course) in mine and Jophies new favorite vacation spot. And don't you be surprised if one day your browsing Big Sandy and you see this momma and her son all stretched out on those big comfy chairs watchin one of those big honkin screens!

Be sure and say HI when you pass by. Now pass the Cotton Candy please :0)

Jophie continues to do well. We are 5 days out since the last dose of antibiotic. We haven't gotten his sodium level yet. Labs were drawn Wednesday but the sample hemolyzed. This was repeated on Friday with results pending. Upset tummy, persistent stridor and bathroom woes continue to plague him.

For now we soldier on and continue claiming this verse.

God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you."

Once again I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt.
I have to Praise him even in the Storm and it does indeed seem to be letting up! :0)

Thank you once again Casting Crowns for this song and others that continue to be a soothing balm for my soul.

• One Day
• One Hour
• One Minute
• One Second
• One Step at a Time.......

OK gotta scoot and yet again this momma wants to thank you from the bottom of her heart as you faithfully approach the throne in Jophies behalf.

Looking upward!

Make A Wish.......

It's Wish Time! :0)

Make a Wish contacted me to say they were ready to begin Jophies wish next week. A painter is coming by to discuss colors. He knows we are converting the living room into a theater so basically he just needs us to pick a color and to get ideas on how we want it to look.

I have a few color swatches that Katy(friend/Jophies Aide) picked up and I think I've narrowed it down to about 5 colors. It's been so long since I've been to the movies that I've forgotten what the inside walls look like. I know they use a darker color and if my memory serves me correctly they usually have it painted in a burgandy/maroon/purpish/rusty/redish color depending on the theatre.

Jophies wish representative is so sweet and is working so hard to make this perfect for him right down to the smallest details. I can't wait to share pictures when its all finished.

One thing we need to do soon is take Jophie to Big Sandy. They are putting in theatre seats only not the hard backed type. These are more of a recliner style but, because of Jophies back we need to physiclly put him in each style to see which seat is going to work. I'm hoping by reclining the seat a bit he will be comfy. The only other thing would be to decide on dual or single seating and once again this will all be up to Jophie. :0)

Our plan for now is to call Big Sandy and explain the situation including his compromised immune system. We hope they will be willing to let us come after they have closed for the evening. Lets hope they will agree!

Now I need to go finish up what I've been working on for the past few days. We have to clear all we can out of the living room so they have room to work. At the moment it looks like a tornado has been spinning around in there! No worries though cause this momma will Git R' Done! :0)

Jophie still has a few more days of antibiotic and he's still looking good. Next Wednesday is bloodwork to re-check his sodium level. Please continue to pray that the sodium level in his bloodstream is normal and above all pray those germies away from my sweet boy.

This momma thanks you from the bottom of my heart for your persistance as you continue to petition the throne in Jophies behalf.