Arts & Crafts

We all had a great day today.  Cole had a Tom Sawyer show this morning and had to be at the Arts Center at 9:00.  Spencer and I got up, got his feeding & breathing treatment done and then headed out so he could get a haircut.  I offered to cut it but he declined!  We went to Target after the haircut and even though we were there only 20 minutes, Spencer was super tired when we left.  Then back home to do another feeding and get started on the REAL fun of the day...

Our friend Anne came over to help with the making of the "Team USA" dodgeball tournament t-shirts.  We had so much fun even though she and Spencer gave me a hard time the entire time she was there but that is nothing new.

Anne was in charge of the stenciling on the back of the shirt and I did the front.  I was surprised at how quickly we got it done.  I love crafty days!

I kind of had a little breakdown today when I realized that Spencer will need to be fed in the middle of his dodgeball tournament.  We have ordered a special backpack that will carry his pump and food in nifty pouches made especially for this type of feeding, but it won't be in until sometime next week.  So I found one of Spencer's old backpacks and rigged it to hold everything.  We tried it tonight and SUCCESS!  Now we really are ready for Saturday.

It's been a long week for everyone and we are so happy to be able to be at home together as a family.  Sweet boy studying...we are SO BLESSED with both our boys.

Home Sweet Home

It has been wonderful today being able to be home and just chill.  Everyone got to sleep in this morning (until 7:00 anyway) and then Spencer and I had a quiet morning of trying to figure out how we are going to get everything done on the time schedule that the hospital set.  We will need to tweak it a little or else we need to find an extra four hours to add to a 24-hour day!

Spencer has a dodgeball tournament at our church this weekend that he has been planning for months.  He has organized the team, created the t-shirts and has their strategy figured out so that "Team USA" will be the tourney champs!  We were working on the t-shirt design today and although he liked the design on the front of the shirt, he is totally rejecting my design on the back because I used puffy paint!  Seriously?!  I think it looks so cute!  Well, I guess "cute" is not what these guys are going for so the puffy paint shirt is mine and we'll do a "brute force" design on the back tomorrow!

The front of the shirt....

The back with the puffy paint!

I think it is soooo cute...guess that's why I'll be wearing this one!



Heading Home!!!

Finally, the day has arrived that we get to get out of here and head home!!!  We love our friends at ACH but we LOVE being home even more.  We knew it was going to be a long day, especially since I had to be trained on the new equipment that we will use for Spencer's tube feeding, so I woke up this morning thinking if we could just be home by 3:00, I would be happy.  Well, we got home at 4:30 but I was still happy. 

Here are a few more pictures of our friends at ACH.

This is Jenny, Spencer's physical therapist and great friend.  His week is not complete if he doesn't get to spend time with her.

Spencer with "the girls", Kristen and Jenny.

Awww, Christy, one of the best nurses in the hospital!  No matter how freaked out I get, Christy is always calm, cool and collected.  I tried to bring her home with me today but she seems to think her family needs her more!

We headed out of the hospital with TWO wagons full and I had already taken a load to the car!  You would have thought we had stayed 9 weeks instead of 9 days!!

Oh yeah, WAY too much stuff!!!

Love this!!!  Max hasn't let Spencer out of his sight since we got home!  We just couldn't resist taking the feeding pole out on the deck and enjoying the awesome weather. 



ACH Friends

Well, it's been a busy day with friends stopping by to keep Spencer company.

I love that he has such awesome friends!

One thing that is really cool about Arkansas Children's Hospital is that most of the staff that is here today is the same staff that took care of us when we were admitted for the first time eleven years ago.  That says a lot about this wonderful place.

This is one of our FAVORITE Respiratory Therapists, Miss Martha.  Martha was the very first R.T. that Spencer had when he was brought to ACH eleven years ago!  She is awesome!

Meet Amy, our awesome nurse.  Spencer loves her because she jokes around with him AND he can shoot her with the nerf gun without severe repercussions (she has five older brothers so I guess she is used to these boy antics!).

And, finally, it's Dr. "Alabama" a/k/a Dr. Josh.  When we brought Spencer to the ER last Saturday, Dr. Josh had on his Alabama t-shirt and even though Spencer was not feeling well at all, I really did think he was going to tackle him.  I have given Dr. A a very hard time this week leading up to yesterday's game but he was a gentlemen and didn't taunt me too much when he made rounds this morning.  I HAVE to be nice to him because he is writing our discharge orders for tomorrow!!!

Assuming there are no major kinks, we are hopeful to be home for dinner tomorrow night.  We can't wait!



Our kiddos are missing us!

Our neighbor, Mary, said that she had some visitors yesterday that looked like they were lonely!

Poor baby Max is wondering where his mom and bro bro have gone.

Our little puppy sure is getting big!

Best buds heading back home.

Thanks for the awesome pictures Mary.  We will be so glad to get home and see them.

Post Game Blues

Spencer handled the Razorbacks' loss much better than I did...I have now officially sworn off all sports (until next weekend, I'm sure!).  How heartbreaking.

Even Cole, who's not a huge sports fan like Spencer, was so dissapointed.

Cute, but sad, Razorback fans!

Oh well, there's always next week.

Everyone had a good day.  Spencer is down to 1/2 liter of oxygen and our goal is to be off of oxygen by Monday so we can go home!

Cole had a show today and some of our family got to see it for the first time.  They really enjoyed it and then Grandma and Papa brought Cole up to the hospital but Mom said she knew they wouldn't get to visit with Spencer since it was in the middle of the football game! ;)  Grandparents are so understanding!

Ready for the game!!!

Well, to say Spencer is ready for the game is an understatement!  When my eyes popped open this morning, Spencer was already bright eyed and bushy tailed and ready to get going.  I barely had time to fill up on espresso before pre-game preparations were made....shower, feeding through his new button and finally, the Razorback attire.

This is the shirt that all his friends signed and brought to him yesterday.  He loves it!

I have my new Razorback shirt and Razorback earrings and the best part?  The shirt is bedazzled!!!  Love it!!!!

GO HOGS GO!!!!

Post Surgery Fun!

When Spencer returned to his room today after surgery, ten of his friends were waiting for him.  Thanks to Anne Campbell and Karen Colford, these kiddos came up while Spencer was in post-op and did a FABULOUS job of decorating his room in Razorback rah-rah stuff!!

Spencer even got a Razorback snuggie which he insisted on putting on immediately.

Spencer is SO BLESSED to have such amazing friends that love and care about him.

Thanks everyone!

Pre Surgery

Spencer has had fun this morning, first by playing Wii with Jenny, his friend and physical therapist and now by playing with Lisa's Ipad while waiting for the surgery team to come and fetch him.  In addition to placing the feeding tube, the ENT team will be in surgery and Dr. Richter will clean out as much gunk as possible from his left lung and build up his right vocal cord so that his voice is stronger. Surgery should take around two hours.  I will let you know when he is out.  Thank you for the prayers.

Helllooooooo.....

3:19 a.m. ~ Hello?  Hello?  Hello?
At this point, picture the anesthesiologist contemplating which object in the room would make the most impact to my head to wake me up...chair, table, brick?
So, he did the next logical thing...he touched my leg which brought me straight up out of bed like a bullett with wild hair, wild eyes and probably drool on my mouth.
"Yes?", I said with a voice even I didn't recognize.
He took a step back!

4:47 a.m. ~ Hello?  Hello?  Hello?
Ahh, the surgery team.  I was waiting for them and hadn't really fallen back asleep after the first incident an hour and a half earlier, although I was having a dream that I was going to the prom and I couldn't find a dress that fit me.  Hmmm, think I need to start running again.

6:39 a.m. ~ Hello?
Really?  Seriously?  Who else is left that will be part of this surgery?
Respiratory...just checking his vent and wanted to ask me a question.

I give up.

Surgery will hopefully take place some time today.  I think I will nap until then.

And the plan is...

As of 11:46 pm Thursday night, the plan is for Spencer to have surgery Friday afternoon to place the g-button.  We are SO THANKFUL that the Lord has worked out a nearly-impossible surgery schedule and has made it possible for Spencer to be placed on tomorrow's list.

 

Spencer is so ready to have the g-button placed and get on with the healing.  He was in anguish tonight when he said, "I can't believe I've been killing myself over the past year while I was eating."  It broke my heart.  We have talked all evening about it...Brad and Cole were here earlier and even after they left, that's all Spencer and I have talked about (well, and we talked about some guy who got hurt on a college football game we were watching!  It was awful!)  The point is, Spencer has taken the information given to us and realizes what has to be done and is ready to move in that direction.  I love his attitude and way he deals with these situations...he definately gets that from Brad.

 

Thank you so much for all your prayers.  I can't imagine facing this hurdle with trusting in the Lord and knowing that all our friends and family are lifting us up in prayer.

 

We love you all.

Now for the bad news...

Well, this day has not had the results we were praying for.  Spencer failed his FEES test.  The test is where a scope is placed up Spencer's nose and into his throat to watch the muscles as he is swallowing different foods of different consistency.  He aspirated on every consistency, which means that the food is going into his airways and his lungs instead of down his throat into his stomach.  Dr. Richter said it is a nerve problem which is caused by the location of the tumor he had.  The part of the brain stem where his tumor was is the part that controls breathing and swallowing.  Because it is a nerve problem, Dr. Richter is unable to fix it.  Therefore, a feeding tube will have to be placed in Spencer's stomach and all food and drink will now be fed to him through his g-button (feeding tube).

 

As you can imagine, Spencer is devastated.  Anyone that knows Spencer, knows how much he loves to eat.  I have no idea how we will proceed from here. 

 

The positive aspect in all of this is that Spencer's lungs should be able to heal.

 

I know this is God's plan...I just don't know why.

Razorback Friends

Spencer got a visit today from former Razorback Cheerleader Andrew Decker (left)

and former Big Red Mascot Chris Decker. 

They were the nicest guys and Spencer had a great time talking football!

Here's what has happened so far...

This is the update I sent out by e-mail on Tuesday, September 21st.  It gives a little background info that will help you understand what's going on.


Well, it's been an interesting day.  First the good news...the docs gave Spencer a pass to go to the Arts Center to see Cole's performance in Tom Sawyer.  The 7th & 8th graders from Arkansas Baptist were there for a field trip and Spencer got to sit up front with three of his friends.  It was the highlight of his week!

Now for the not-so-good news...we met with Dr. Carroll and Dr. Awad today with the pulmonary team.  The CT scan showed that Spencer's lungs are much worse than we originally thought.  Dr. Carroll said that in addition to the pulmonary consolidation areas that are in his lower left lobe of his left lung, now there are new infiltrate areas both on the left AND the right.  Also, his left diaphragm does not appear to be working.  In addition, his right lung is enlarged to the point that it has moved his heart over to the left side and is encroaching on his left lung.  The doctor's thinking is that he is silently aspirating and that over the past year, little bits of food have been going into his lungs which is causing the infections and pneumonia he has been experiencing.   Tomorrow, the speech pathologist will start preparing to test Spencer to see what is happening when Spencer eats different foods.  We have no idea how long this whole process will take but I'm sure we will be at ACH for a while.

Dr. Carroll is determined to find out exactly what's going on and then fix it.  He wants Spencer to be able to live his life, without being hooked to oxygen, and participate in school and sports like any 14 year old boy wants to do.  We appreciate his tenacity more than he knows.

Spencer is upbeat and determined to beat this...we discussed how now is the time to FULLY RELY ON GOD!!  You can't just walk with God when it's good and run for the hills when the going gets tough.  This is what faith is all about.

So, if you call, I'm not able to talk about what's going on but please feel free to text or e-mail.  If you come to visit, please don't mention it but Spencer would LOVE to have visitors.

Thank you all for your prayers.  We love you,
Marilyn

AWAKE!

Respiratory treatment?  Check.  Shower?  Check?  Breakfast?  Not yet but it's been ordered. 

Krisi, our speech pathologist, is hoping Spencer will go for his FEES test this morning!

Thank you for the prayers.

Early Start

It's early this morning and Spencer still has his vent on while he waits for the respiratory therapist to make her appearance.  We had a good night's sleep and now all we are lacking is COFFEE!  Oh what I wouldn't give to be able to have my espresso machine in the room!

Tom Sawyer Play

Jake, Spencer, Seth & Riley on the front row at the Arts Center to see Cole in Tom Sawyer.

Wacky Wednesday

What a day!  Spencer was feeling great even though his CT scan results make us wonder how that is possible.  He worked with OT/PT today, had quite a few visitors that brought tasty treats and went to the teen room to hang out with people that aren't his mother.

There was no Tom Sawyer show today so Cole was able to go to school all day and then rode to the hospital with Alyse and Manly after school.  Two more weekends and one more week of shows and Tom Sawyer will be history while rehearsal for The Christmas Story will be upon us before we know it.

I'm definately looking forward to cooler weather.  I hope Lisa Roberts wasn't fibbing when she said we should get some next week!

Welcome to our new blog!  This is my attempt to keep everyone updated on what's going on with our family (if that's possible)!