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!}


Melinda said...

WOW - this post gave me chills!! Bubba as well as Team Bubba ROCKS!!!!! I love to hear how well he is doing, especially have gone on a dollar coaster! Hellooo .. miracles do happen :)

Susan said...

That peace you felt was a true connection with your God to let you know He is there with you all the time. What a great gift to have Bubba surprise you with renewed energy and spirit! It makes all who share this journey, through your words, grateful and excited for all of you! And HOORAY for the doctor who welcomes the challenge and will fight, with you, to help Bubba in whatever ways are possible! I'm sure Bubba will teach him a thing or two! Here's hoping you spend a lot of time on the upside of that roller coaster! Prayers continue....

sylviamyoung said...

I love that picture of Bubba! Smile is so amazing. Lots of prayers for you all for tomorrow. Hugs to you, I wish I was closer so I could learn to care for Bubba and give his wonderful Momma, Dad and amazing sister a day out! Hope you all have a great weekend!

Rochelleht said...

YEAH!!! You guys are so awesome. I'm so glad you were able to get an answer from above and able to find some more answers from doctors. I'm so glad he's doing better.

Christine said...

That is awesome news! YEA Bubba!!