Aug 29, 2011

Thanks for the Memories! (Buccaneers)

We are big football fans.  And by "big" I mean HUGE. 

So imagine my sheer delight when Jen from the local Make a Wish office called.  She said they had some tickets for the upcoming preseason game of the Buccaneers versus the Patriots and would we like to come?  Duh.  The only question would be how many tickets. 

I knew the little kids wouldn't have a clue what was going on but I also didn't want them to miss out on such a cool opportunity.  I also knew my Dad and nephew would like to go too so we ordered the tickets and waited 2 long days until it was time for the game! 

During that time, I did "football school" for the little kids.  I told them about the lines on the field and some of the major things they'd see/hear at a game.  They were excited. 

We all arrived in our Buccaneer's shirts.  (It was at that point that Jen saw us and realized she'd called the right family she said.)  They then gave us all a new t-shirt to wear (Zoe still wears hers every night as a pj top).  And we headed in.  We had Manny in his wheel chair as he has a lot of supplies.  He went in through the "handicap access" gate and they were very sweet and kind to us.  The rest of the family headed up the escalator and Manny and I went up the elevator.  In the elevator, there was a volunteer for guest services who immediately started to help us.  We didn't ask for help ... he just offered.  He arranged for me to have a seat near the group where he could stay in his wheelchair if we wanted.  And if not, we'd at least have a place to park his chair. 

What we were completely unprepared for was ... the tickets from Make a Wish were on the goalline ... FRONTROW!  There probably wasn't a better seat in the house! 

I'd never been to a pro game before ... and neither had my dad "Papa".  He was the one who had taught me the love of the game and he looked like he was in "awe" of the whole situation.  We were sooo glad we got to share this very cool experience with him!

I spent part of the time up top with Manny in his chair and the second half of the game on the front row holding him.  We chatted with cheerleaders and Captain Fear.  We waved at reporters and players.  We had people throw beads at us (it's a pirate thing).  We were so close it felt like we could hear the players talking!  We saw Tom Brady in a huddle right in front of us.  (The next play was a very cool sack by the way!)  We all sat there with our jaws on the ground trying to absorb the moment. 

The kids?  They thought it was cool but had no clue just HOW cool the whole thing was.  The magnitude was lost on them but that's OK.  They enjoyed it for a while.  And now they've actually started watching a few games with us on TV. 

It eventually started to drizzle... just enough to need our rainjackets that we brought and just enough to drop the temperature enough to make it pleasant.  The breeze was just right.  The night was perfect. 

We stayed until the very last snap of the game.  We didn't want to miss even one play.  And we didn't.

I cannot begin to express my thankfulness for this really cool experience for our family.  We don't even know who to thank from the Bucs exactly but we're grateful nonetheless.  Thanks to the Make a Wish local office for thinking of us. 

And if you would like to see the pics from the night, there are a few highlights on this link. 

Thanks for the memories!! 

Aug 24, 2011

Not ready to concede

Most of you know that Manny has been sick for over a week now.  He was fine then WHAM ... a cold out of the clear blue.  Most kids would have the sniffles and cough and that would be that.  But for Manny, this is a potentially dangerous situation and we have to be on HIGH alert.

We are doing everything possible to keep him well and out of respiratory distress or pneumonia.  This requires every 4 hour nebulizers, several oral meds, chest therapies, oxygen, monitoring, etc.  (It's exhausting quite frankly.)  But the whole team is determined to keep him out of the hospital if at all possible.

Friday the home health nurse saw him.  Monday we were at the primary.  Today was the pulmonologist.  So he's being fully monitored.  They all say we're doing a great job and doing all we can do.  He seems to be improving slightly every day so that is encouraging as well.

The problem is this ... his oxygen saturation levels are dangerously low at night.  They're fine in the day time as he is strong enough to maintain his breathing while awake but at night, he is too weak.  Even with oxygen, he's not going back to the right levels.  I have never been "authorized" to use oxygen at beyond 2 1/2 liters (since his usual dose is actually 1/2 liter).  But ... it wasn't working.

I agonized several times during several nights if I was making the right decision or if he needed to be in the hospital.  (It's a fine line ... and all the aforementioned professionals agreed with me about the fine line and that either decision was probably a good one ... to go with my gut.)

So today I asked for clearer criteria of when to go to the ER with him.  I was very thankful he gave me fairly clear guidelines.  Hopefully we won't need them and he's improving but I feel safer knowing what they are.

But this is the concern ... this could be an early sign of moving to the next stage towards respiratory failure.  We won't know if this is the case or not until he is all better from this cold and we can then see if this is his "new norm".  We also have a sleep study scheduled in September (after he's well) to see how his complete lung function is doing and what his new baseline is.  To see if it's changed from a year ago.

There is a possibility he will need some interventional breathing help/support (such as cpap or bipap).  Most of my contacts with kids with his disease believe these kids NEED to be on bipap regularly even if the sleep study doesn't show it.  I'm not sure where I stand on all this as this conversation is completely new to me and I need to research more.  But they all say it was a life changer for the better.  Many of the docs who specialize in this field believe it actually prolongs healthy lung function (versus spending all their energy trying to breathe nightly.)

This might not seem like a big deal to some of you ... but to me it's HUGE.  It's what seems like another step backwards in health status.  And I'm just not emotionally prepared for this yet.  And I'm not yet ready to concede that he's getting weaker in respiratory function.

In the meantime, we're just thankful for the prayers.  While he's sick, he wakes up every 5-30 minutes screaming and is not easily consoled.  (While healthy, he NEVER wakes up!)  Dan has slept on the couch for a week now so that he can be semi-humane the next day.  Manny and I are just dragging every day due to lack of solid sleep.  We'll be thankful when this cold is over.

Aug 20, 2011

Alaska Through Manny's Eyes

Jacob and the other kids are all old enough to really appreciate the whole trip to Alaska.  But what about Manny?  His trip was a completely different trip than ours so I thought I'd share a bit of our Alaska trip from his point of view.

First was the airport.  He was thrilled seeing all the airplanes ("airpane" as he calls them).  He was even learning how to make the sound and trying to raise his hand pretending to make it "fly".  Once on the plane, he kept telling me he was on an airplane.  Then every few minutes he would say, "Kaley?  You on airpane too?"  Then it would be, "Jacob? You on airpane too?"  He did this with every single family member a couple of times.  Pretty funny. 

By the time we got to the hotel that evening, it was 3am to our bodies.  Manny had slept some on the plane and was still pretty tired.  We ended up in 2 hotel rooms - one for Dan and the boys and one for the girls, Manny and me.  He didn't like that we were split up.  When it was time for bed, he freaked out.  He cried a LOT and seemed terrified.  Normally he HATES to be put on his stomach but this night, the only way I could get him to calm down was to put him on my tummy and we were face to face with me squeezing him tightly.  I kept telling him that we were staying together. 

Once we got on the boat, he didn't realize we were ON the "big boat" as he called it.  He was so funny as he would get all excited about all the boats around us but it was completely lost on him that HE was ON a boat too. 

Every staff member that met him fell in love with him.  (duh).  The dining room was often very crowded and it's difficult to find tables close together for all 8 of us (not to mention the extra room the wheelchair takes up).  But there were handicapped tables together near the doors and the staff would basically "reserve" it for us, pull them together for us and then all ooooh and aaaaah over Manny.  He even learned their names too.  He'd call them by name when we saw them.  "Janice" "Tatiana" and "Deepak" were among his favorite staff members.  (Even while home for a week now, he'll start saying their names out of the clear blue!)

Janice would point to herself and say, "Manny, who is this? Janice." so he eventually would see her and say, "Who is this Janice?"  while pointing to himself.  LOL

When we were in Juneau, we took the tram to the top of Mt. Roberts.  At one point, the trail became inaccessible via wheelchair so the kids and Dan continued on the trail and Manny and I went back to the building.  What you need to know is that Manny breaks out into the song, "Mighty to Save" ALL THE TIME.  Maybe 20 times a day.  There's one line that says, "He can move the mountains, My God is mighty to save. He is mighty to save."  This is the part that Manny started singing out of the clear blue.  And as I looked at him, there was this mountain range right behind him.

And it hit me.

You see, we live where there are no mountains (23 feet above sea level is considered high and dry around here!).  We sing that song all the time and think nothing about it, kinda go through the motions of singing it.  But this day, there was a mountain RIGHT THERE. And I imagined God moving it.  WOW.

Furthermore, with the grain of a mustard seed, WE are able to move mountains it says.  Double WOW.

In addition, Manny "Got it".  He connected the word Mountain from the song with the tall things right in front of us.  I have no clue how deep his understanding went but I know he "got it" on some level because he said "Mountain" and pointed to one while he was singing the song.  Cool.

So tears started streaming down my face.  It was a cool spiritual experience.  I can never sing that song again without having that memory.

The next day was Skagway.  While we were looking at all the amazing views, this is what Manny was doing!

 ...asleep.  Yes, I think it was all lost on him too.  But he enjoyed playing with toys in the car and just hangin' with all of us.

But not to worry, when we got out, he joined right in and had fun.  (Complete with sound effects! LOL)

This dog and he had a special bond instantly.  He CRIED when we left!!

Most nights, the kids would eat dinner at a normal time in the buffet line and then head up to the kid room to play.  We would go to the restaurant (sit down dinner) at 8:30 pm (waaaay tooo late to be eating, especially considering that was a 4 hour time zone change from EST).  Manny would sit with us and I started bringing him his little DVD player with Diego video (his favorite).  He'd sit the whole dinner watching that.

And here is his view.   Not bad, huh?

So now you know what an Alaskan cruise looks like through the eyes of a 2 year old!

It's all about being together.

Aug 15, 2011

Alaska Cruise 2011

There is absolutely no way to capture all of the trip in one blog post.  We didn't post about it day by day for security purposes and then there was no real internet access while gone so I'm having to do a catch up post for a 10 day trip.  (yeah, right)

Quick version... Jacob's Make a Wish trip was to Alaska on a cruise.  The night before we left we went ice skating (their first time) and laser tag (also their first time).  They loved both and had a blast.

Limo picked us up.  Long flights there.  Some kids were air sick but not enough to hurl.  (Thankfully).  But the baby did have a blow out diaper in the turbulence and I had to change his diaper/clothes there in the seats (seatbelt sign on).  The rows behind us were complaining about the smell for quite some time! LOL (They didn't know it was Manny!)

Seattle (didn't get out to see anything), just got on the boat.  Kids were blown away.

Headed out and were at sea.  Went swimming indoor heated pool.  Jacob went to the teen's club.  Kids went to the kid club.  Formal dinner.

Juneau:  Went up the tramway to the top of Mt. Roberts.  Majorly beautiful sights.  Kids did hike with Dan beyond where Manny's wheelchair could go.  Shopping in Juneau.  (Got fudge ... yum.)

Skagway:  Rented van and drove and drove, deep into the Yukon.  Went to Carcross where we got to see the wildlife museum, hold husky puppies and pet iditarod dogs.  Saw the world's smallest desert.  (Didn't take long to see it.)  Stunningly beautiful views... like they are beyond words.

Victoria:  Got on a whale watching boat and got to see several humpback whales, seals, sea lions, a deer, bull kelp, etc.  TRULY amazing to see it all in real life, not in Sea World.

Seattle:  mostly rude locals we came in contact with. Saw the world's first Starbuck's (sadly, I don't drink coffee) and it was like Mecca for these people in the long line!

Wow!  Can't believe how quickly I summarized this trip of a lifetime.  The weather was perfect.  There was no rain or clouds.  The skies were perfect blue.  The staff kept commenting how they'd never seen it that beautiful or perfect.  No one got sick.  No troubles at all.  Truly, many people were praying for our trip!

And rather than uploading pics on this site one at a time, I've decided to upload several on Facebook and will just include the link.  Click on it so you can see some of the pics to describe what I've been describing.  ENJOY!!