Wednesday, May 30, 2012

{Roller Coaster}

What a roller coaster these past six months… {Ok, twelve years} have been.

 Bubba was doing really well. He hadn’t had to many surgeries, was going to school regularly, and even managed to go with us on a family trip to Texas. Then things changed. I was used to the “normal” disability and health issues but it was different. It changed big time and quickly. It scared me.

The hardest part these past six months was trying to convince the doctors, and myself at times, that I was not crazy and that Bubba’s new “issues” could be fixed.

 I have always felt a complete partnership with God in caring for Bubba. I have always asked for, prayed for, the understanding when that time comes… when there is nothing else. At the beginning of this most recent journey I prayed for this understanding, to know if Bubba was done fighting. I was worried that he might be. I had never seen him sleep most of the day away or cry out in such pain before. Had it finally all become to much?? While Bubba and I snuggled in the recliner late one night I asked God to help me to understand. Our home was perfectly quite with Hubs and Regan sound asleep. Something special happened… I felt peace. At first I was confused by this peace. Did this mean that I needed to accept what was next… but what was next?? The next morning I got my answer. Bubba woke up HAPPY, his BIG smile was on display and it was obvious that this sweet little warrior of mine still had TONS of fight left in him. That sweet smile was the conformation that I needed ..... NO… NO HE IS NOT DONE FIGHTING AND NEITHER AM I.

I went from doctor to doctor trying to make sense of Bubba’s tired and pain filled days. They ran test after test and just kept coming back saying … “I have no idea.” I got tired of hearing “Well, maybe this is just the next phase of TTD as it progresses and will only get worse.” We parted ways with a doctor that no longer felt comfortable treating Bubba. Look, there are no hard feelings here… I would much rather you tell me that we are entering out of your comfort zone instead of “sticking it out” and not giving it your all. As we said good bye to some we welcomed a new fresh team on board. We have one dr. now that we LOVE. He has an understanding of Metabolic and Mitho kids and was willing to take Bubba on, he welcomed the challenge. I have had to fight with the insurance, nurses, and doctors BUT yesterday I felt some victory with this battle. Bubba and I sat in Dr. R’s office and his words sounded like music to my ears. “Bubba is doing good.. He is getting stable and I think we can take the need for a trachea off the table.” VICTORY!!

After so many hard blows and crummy news I finally felt victorious!

Not only does Bubba not need a trachea but he is awake more, happier, and has more strength and energy.

 He has even been crawling!!!!!

Seriously y’all, I feel like I just won the super bowl.

 I know that we still have a LONG way to go and Bubba will still need to receive his IVIG infusions as well as another infusion that our insurance denied and we are fighting. He will still need to take his 27... Yes, I said 27 medications daily…. And the occasional surgery. Shoot, he is going in for surgery on Friday. {prayers please.} ;-)

I know that Bubba might not get back to the same place that he was before and I am OK with that.

I just feel like …..

I finally have my Bubba back.

I feel hope.

I know that this is not the last battle for team Bubba verses TTD but I will take this small victory and add it to all of the others that Bubba has managed to win.

You know that we are celebrating over here and I just wanted to share the GREAT news with everyone else out there that loves our little Hero Bubba.

This is a CRAZY roller coaster with some pretty awful lows BUT the highs are AMAZING!!!
Shut the front door.....

Bubba was feeling strong enough to go on a BIG roller coaster at Disney on Monday!!!!

I KNOW.... brought tears to my eyes too! ;-)

{More fun pictures from our fun to come!}

Sunday, May 27, 2012

a {smile} from my Hero

This week Bubba had to go into in the hospital for his treatment, his infusion.

I am AMAZED by his constant SMILE.

These days are LONG....

These days are HARD.....

The side effects are CRUMMY....

BUT through it all..........

He SMILED becuase we got a room with a view of the street {rare} :-)

He SMILED becuase he was being silly! :-)

He SMILED becuase we got extra cuddles. :-)

He SMILED becuase his girlfriend from child life came to see him. :-)

He SMILED becuase Daddy stopped by to say hi {and bring Mommy a diet coke} :-)

He SMILED just because. :-)

He SMILED {and flirted} with the amazing nurse Terri. :-)

He SMILED becuase we played with the lights! :-)

He SMILED becuase he got to get out of his tiny room. :-)

I SMILE every day because I am lucky enough to be his Mommy.;-)

{Fish and Friends}

Last weekend Hubs had to work, Bubba was feeling good, and I was feeling pretty brave.

So, Regan called up a friend and invited her for a play date. ;-)

We haven't had enough fun play dates lately and it felt so good to get back a bit of our "normal" fun day outs.

We started our fun at the Aquarium of the Pacific.

After the Aquarium we walked out to see these super fun "hamster" balls.

The girls just HAD to try the out. ;) 

Bubba was so cute watching them.

I think he might have been a bit jealous of them but he liked watching them fall over and over.

After we got home we busted out the slip n slide for some summer fun!

It was such a fun day!

It was pretty simple compared to some of our past adventure BUT it was perfect!

It wore Bubba out and the next day he had a BAD day... this made me even more grateful that we took advantage of a good day, it would have been a shame to let it go to waste. ;-)

Thursday, May 24, 2012

the in between moments

I post a lot about the big stuff but there are even more fun moments that happens in between it all.

{stole this idea from a friend.}

So, here with go with our very first in between catch up post, picture style!

Last week Regan had western day at her school.
{Yes, this is our version of western...... California western. }
All of the families were invited to come and eat lunch
with the kids for the special day at Regan's school.

The same day Bubba had an apt. at the Dr. office.
{We found out that Bubba will be having another surgery next week.}

I had promised Regan that I would bring her lunch and come and eat with her.
When I realized that this would be impossible Team Bubba jumped into action.
A super sweet friend went and picked up lunch for Regan and dropped it off.
Thank you Ms. Sherill!
Bubba and I raced over after his apt. just in time to see Regan
and her cute friends finishing up their lunches!
We were not there long BUT we made it and that is all that matters. :) 

Regan and her principal.
On our way out we ran into one of Bubba's buddies from elementary school!
Seth is such a good kid and gave up his recess time to come and visit with Bubba in his class.
{it is amazing how quickly they grow up.. he is now in high school}
A visit from Bubba's super awesome teacher!
Super fun cheer package from Poppie and Aunt Nancy!
My mom made Regan and McKenna matching dresses.
Too cute!!!
We have also had some not so good days....
let's skip over those quick! ;-)
Bubba was feeling well enough to swing by
 and say hi to his friends at school one day! 
They were having their Best Buddy carnival and
 everyone was super excited to see Bubba. 
I know I have said it before but I can't say it enough....
I LOVE Bubba's school, I LOVE Bubba's teacher!
Another cheer package with more super cute clothing from Poppie!
She also made Bubba this cool walker bag.
{I will take better pics later.. it is awesome!}
We had a visit from a very special friend, Sara.
Emily's mommy is having to make the hard decision to sale and get rid of some of her equipment.
We were happy to buy a pump and have a little peice of sweet Emily here in our home.
{Bubba was having a BAD day that day and she is the only  one that got smiles out of him!}

There is so much more that I will have to write another post BUT I will end with this one.....

Our sweet Bubba will be turning 12 years old on the 4th of July!!! I know I can't believe it myself!!! We were told he wouldn't make it to his first birthday. So, we are celebrating our American Super Hero with Team Bubba t-shirts! The idea behind them is that friends, family, anyone who is part of Team Bubba in some way will wear them on the 4th of July and when asked about it they will share Bubba's story.  They will share about TTD and what an awful beast it is and that there is no cure BUT hopefully some day there will be one! They will share about Mito and Metabolic kids and what they have to endure. This is NOT a fundraiser it is simply a way to bring awareness to TTD and Bubba and his story. ;) More info on this to come. ;-)
{a BIG thank you to our friend Andy who designed the Team
Bubba logo and to his wife Julie for volunteering him.. wink!}

Monday, May 21, 2012

all we need is a good ol' bus

I LOVE that no matter how hard the day was before.......
each morning brings with it a fresh start.

I LOVE despite a hard night Bubba can wake up with a smile. :)

I LOVE that all it takes to celebrate a good day............
is walking down to the corner...............

and watching for busses!

I LOVE his awesome example on not dwelling on the crummy stuff and quickly moving on to the positive like........... 
a good bus!

I LOVE that we live in the city and a good bus is only one block away!

I LOVE that our week has started out with smiles! :)