her sweet heart

Regan came home from school on Monday and proudly told me ....

"Mom I won the drawing at school and got to pick out of the treasure chest today!"

{her teacher gives out tickets for being good in class and then has drawings.}

"I got Bubba this car.... I just knew he would LOVE it!"

She gave him the car and he LOVED it!

He kept loving on it and looking up at Regan with pure delight!

He can not verbalize it in words but I know that he was touched by her act of kindness.

He held on to that car all day long!

When it came time for bed Hubs called me into the living room where he was cuddling Bubba.

Bubba was fast asleep with that car clutched tight in his hands.

I had to pry it out of them when it was time to lay him down. ;)

I am so grateful for their friendship.

I am grateful to know that Regan could have easily picked out something for herself but thought of others first.

I am grateful for her BIG heart and for the joy that it brought to Bubba that day. ;-)

{tender mercies}

Last week we had a very hard day but some very sweet tender mercies that came along with it.

Bubba was scheduled for surgery on Thursday.

We ordered a "part" ...yes... a part from Bubba's home medical supplier.

We ordered this part well in advance and made the surgery date.

The first package came and it wasn't even close.. it was a cream.

Called.. complained... they agreed to send out the correct one and told me to keep the cream.

"it wasn't cost effective to pick it up."

The next package arrived and it was a similar part but not the right one.

{it was a g instead of a gj.}

Called... complained ... told them that the surgery was in two days and that they needed to fix it.. PLEASE!

"No problem Mrs. Presley... hold one moment please....................................................................................................................

.......................................................................................................................................

............ Oh, we have a problem... that part is on back order."

WHAT!?!?!?!

Then I kindly expressed my frustration {without any bad words} and reminded her of THEIR errors and that I would not have scheduled the surgery if they had told me from the beginning that it was on back order.

"Yes... Yes.. Mrs. Presley I understand what can we do for you?"

"Ummm... you can FIX this.. I don't care what you have to do. My son is having surgery in two days and it is too late to cancel .. come on!"

In the meantime... while waiting for phone calls to be returned ....

I call the surgeons office and spoke with his nurse.

A nurse that is normally not very pleasant  but was VERY sweet and kind to me despite the threat to have to cancel Bubba's surgery 2 days before it was scheduled to take place.

At this point I am talking the managers and a sweet lady was able to order the part directly from Kimberly Clark and have it shipped to us the next day.

Wahoo... we were able to dodge a bullet.

Nurse calls back to let me know that they needed to push Bubba's surgery back...

it was scheduled for 9am and we would need to be at the hospital at 7 and she rescheduled the surgery for 11 having us arrive at 9am.

I didn't mind one bit and thanked her for being so understanding with my earlier frantic phone call.

The next day came and at 2pm the part had not arrived yet.

I called nice lady to touch base and see what time it would be arriving, I didn't want to miss it.

"Oh no Mrs. Presley..... we have a problem."

Not again!!!

"They did not ship out the part last night since they are on the east coast."

{let me remind you this is the DAY before his surgery.}

I let her know that I am NOT HAPPY {but again no bad language!!. woot woot!} and that she needed to FIX IT!

It was too late to cancel .....and it would be so rude to the surgeon.... AND it would leave us with a bill for not canceling.

She did what she needed to do and then told me that it would be arriving at 8:30 am on my front door step the next morning.

Ok, this is where the tender mercies hit me.

I got off the phone and cried, partly because of the emotional roller coaster of it all but mostly because I knew that God was aware of us and this trial.

This kind lady didn't have to be THAT kind.

She could have just said.. "I am sorry... we don't have it" but she didn't. {tender mercy}

The nurse that is typically not so nice was so sweet. {tender mercy}

The nurse calling to reschedule Bubba's surgery time making it just enough time for us to be home for the new delivery time and then rush out the door. {tender mercy}

All of the sweet family and friends that I was franticly texting asking for their prayers to make sure that it would arrive the next morning. {tender mercy}

I am so grateful for a loving God that knows me, that knows my trials.

He doesn't take our  trials away, he knows that we need them, but he makes sure to have his comfort felt as we endure ....with sweet tender mercies. ;)

The next morning he part arrived and we rushed out the door to get to the hospital in time.

The darn part!!!

After we arrived Bubba started vomitting and having BAD pain. :-(

We had to wait...... 

and wait ...... 

and wait for the drs. all to agree to go ahead with the surgery given his bad day.

After they all decided to go ahead with it they wheeled my sweet boy and his part off to surgery.

He did great!

and was perkin' up in no time!!!

Seriously,........

even SMILES on the way home!!

I am so grateful for a loving Heavenly Father and for the sweet people that he uses as instruments in his hands.

I am grateful for sweet little tender mercies and the constant reminder that God knows ME and that he loves me!

Feeling blessed!!!

A week ago........

we went to Disney land.

we celebrated Memorial Day with all of So. Cal.

we only went for a couple of hours.

we wore red, white, and blue.

we had lots of smiles.

we ate cotton candy.

we had fun enjoying a good day.

A Good Day.....

Bubba is having a good day....

He wanted to tell you about it in his own words. ;)

{you might want to turn your volume down...don't say I didn't warn you!}

Oh, he also wanted to share his love of remotes with you.

Here's to a GREAT day over here!!!

{Regan}

I think if you ask sick kid Moms most of them will agree that one of the hardest parts of our "job" is not just to care for the sick child BUT to also find time and attention for the healthy one(s).

I have been blessed to sneak away for some very special end of the year moments with Regan.

Regan's class was putting on a dinosaur play on the day that Bubba was having infusion.

I was so sad at the thought of missing it.

I called her teacher, who is wonderful, and we came up with a plan.

They put on a special dress rehersal the day before for us. ;)

Seriously, her teacher is AMAZING!

I was so proud of Regan!

She had a solo part of a teacher and boy did she work it!

I am so grateful that I was able to be the mother that both of my children needed me to be that week.

Hubs was able to go the the actual performance and got video for me! ;-)

Regan also had open house at school the same week and I knew that it would be almost impossible to go becuase of Jason's work schedule and it was to late for Bubba.

My sweet and AMAZING friend Sherri sent me a text that simply asked "what time do you want me to come over on Thursday so you can go to open house?" She did not ask do you want me to or can I ... she knew that there was a need and she just steped in.

 I LOVE HER for that!!!

She is such a blessing in my life and becuase of her kindness I was able to go and spend this special night with Regan.

She is such a smart little girl and works so hard despite so much going on at home.

Her teacher insisted that she be tested for the GATE {gifted and talented program} for next year. 

I am SO SO SO proud of her!!

Regan has been beging to have a Lemonade stand for a while now.

When we decided to have a Garage Sale she knew it was the perfect time to have her Lemonade stand.

Regan and her BFF had a sleep over the night before....

Both of the girls made out good. ;)

It was such a fun day for them, every child needs to say that at some point in their childhood they had a lemonade stand.

Thank you to all of our friends that stopped by to show support!

{more on that later.}

I am so grateful for all of the sweet moments I have been able to share with my girl.

I am grateful that despite how hard it is... is always comes together. ;)

I am grateful that I have such a sweet support system!!!

I know this summer is going to be hard between hospital stays and scheduling fun things for Regan BUT I know that it will all work out. ;-)

{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!}

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 SMILES.

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.;-)