Tuesday, May 26, 2009

Getting Back To Normal...


How exactly does a family transition from going full speed ahead in the land of Magic to living normal life again? -- I guess we will find out.  Today is our first official day of normal life and so far so good.  Madison spent the morning going through all her treasures she collected during our vacation, the favorite of course was her Snow White dress from Nana and Pop pop.

Little Gavin is really feeling the effect from the vacation.  I imagine that this week will bring lots of changes in TPN to normalize his electrolytes and maybe even some blood.  Gavin has been having extremely low heart rates at night, to the point that we are listening to the monitor all night long.  The low heart rate is just a sign of exhaustion -- and now we have to figure out how to get him back to baseline, which is easier said than done.

We are hoping for a quiet week of rest and recuperation!

Saturday, May 23, 2009

Last Day of Magic...

We spent our last day at the Magic Kingdom and it was just that -- Magical (and very wet!)  We started off in Tomorrow land where we rode the rockets up in the sky and then met the crew from Alice and Wonderland.  Some favorites were the Winnie the Poo ride, which they let us ride twice -- so cool, and of course the meet and greet with the Disney Fairies and Princesses.  A little boy I know came out with many kisses marked all over his head.  Madison was so overwhelmed with excitement that she practically stood like a statue the entire time!



Last evening we made a trip to the Medieval Times Dinner show --  very cool but we were all so tired, not to mention I'm a vegetarian, but thankfully they served a vegi meal and even allowed me to use utensils! Early this morning we packed up and said our goodbye's to the amazing Give Kids The World village.  This truly was an amazing place!  Our every wish was made to come true -- allowing our family to find some joy amidst the many sad days we encounter.  Seeing the smiles on our children's faces, knowing the fight for life Gavin is going through and the chaos that Madison endures, was more than overwhelming.



Thank you Make-A-Wish -- you have made our dream come true!




Thursday, May 21, 2009

Another Fun Day...

Today was the best day ever! We started our day early with a private meet and greet with Mickey and Minnie as well as Goofy, Pluto and even Princess Belle. We then headed off to Disney Hollywood Studio’s where we started off with the Playhouse Disney live show where we saw all of our favorite friends including Mickey Mouse Clubhouse, Handy Manny and Tiger and Poo. This was a big hit with Gavin, which was topped off with another meet and greet with all his favorites!

PixarGavin and Madi

Other highlights of the day included the Toy Story ride, where Gavin go on, Ariel’s live show, Muppets 3D show and the Block Party Parade. Disney is amazing when it comes to Make-A-Wish children – as soon as they see his button, they stop everything and make sure both the kids feel special. There is no waiting for anything. No wait for rides and no wait to see our favorite characters!

toy storyparade

We are so grateful for this opportunity – it really is simply amazing, really touches our hearts! Tomorrow we plan to spend the day at the Magic Kingdom, which we attempted on Monday but got rained out.

Oh, I forgot to mention they are calling for snow here in Florida – well at least here in the Give Kids the World Village. Tonight is actually Christmas and I head rumors that Santa will be stopping in!

Wednesday, May 20, 2009

A Little Sunshine...

Last night Madison had a spa hour at “la ti da” Salon here in the village. She got a hand massage and manicure along with some relaxation time in the massage chair – so cute! We then headed over to the jungle theater for an improv comedy show, which Madison got to go up on stage and be a star!


Today we headed out to Universal Studios and actually saw the sun for about four hours! We met lots of fun characters and got to ride some really cool rides. Gavin was able to go on a few rides with his wheelchair, which just made his day! We really enjoyed Dr. Suessville and seeing all the sites while walking the streets of Universal Studios.


I just dropped Madison off at kids night out and tonight is “Village Idol” where I think Madison might once again be up on stage – she likes being the center of attention – who would have known?!

Tuesday, May 19, 2009

Rain, Rain, Go Away...

movie theraterfamily

The heavy rains continue here in Florida -- but the fun keeps of coming to! Today we started our morning out in the Village where Madison was treated to ice cream for breakfast -- a dream come true! We had a nice breakfast in the gingerbread house and then headed out for a wet day at Sea World.


At Sea World we started off with a photo op with Shamu himself, which Gavin just loved. If you look in the photo you can see him tilting his head trying to get closer to Shamu. We then headed for the big arena show where we watch the whales do all there tricks in the water -- which was a nice break out from the rain. We then went and fed the sharks, thanks to our special "wish" button and also took a peak at the polar bears and walruses.

Last night we spent the night at the Village and took part in "Double Dare". Our family got to go up on stage where Madison and Gavin got to throw a pie in Daddy's face -- so much fun!

We are praying so hard for this rain to stop. The cold wet weather is really playing a toll on little Gavi with lots of low heart rate alarms at night. Never-the-less he is still have a wonderful time, as is the rest of us. We look forward to our day tomorrow at Universal Studio's!

Monday, May 18, 2009

Hello Disney...


Ahhh. We made it. Yesterday we headed to the ER around 7am for Gavin's final chest xray before we left for the airport. The xray looked great and we headed off to start our vacation. Things is the airport went smoothly and both kids did great, in fact Gavin slept the entire flight!

Give Kids The World literally took our breath away. The service we have been shown here is so amazing -- anything we want on need is just a spoken word away. Our villa is beautiful and includes a full kitchen two bedroom and two baths, one of which has a massive Jacuzzi tub!

Today was attempted to make the trip to Magic Kingdom -- it was great for the first hour but then the rain fell, and it fell hard and didn't stop all day. Gavin was able to ride his first ride ever -- in his wheelchair! My heart melted as I watched him ride Aladdin's Magic Carpet Ride -- just like every other kid -- simply amazing.

The weather this week is not looking good but we are trying to stay positive and remember that this can still be an amazing vacation despite the rain!

Saturday, May 16, 2009

Oh Goodness...

Gavin's new line is in but the Surgeon feels that he may have punctured Gavin's lung. So far the lung still looks good but we were told that it can take up to 8 hours to show signs of distress.

Because of the possible pneumothorax, if everything still seems ok tonight we will go home and then have to go to the ER for an xray in the early morning. If things still look ok we will make our flight.

It's just never easy!

Friday, May 15, 2009

Feeling Better...


It is really amazing to see how things can change in a matter of a few hours.  No less than four hours before Gavin was admitted to the ICU with sepsis we were at a family dinner.  Adam and I seemed to be trying to convince people how "believe it or not, Gavin is really sick" -- he looked pretty darn good.  Within a matter of minutes we go from eating at the table to carrying our grey, limp and shaking child to the car heading for the ER.

Well, our little bionic boy now seems to be turning around in the same fashion.  He is acting happy despite some abdominal pain due to his huge spleen, and had another good nights sleep.  With that said -- We are going to Disney!


Gavin will get another round of platelets in the morning and then head off to the OR to have his central line pulled out on his groin and into his chest.  After he wakes up we will start packing up and not looking back.  Our transportation to the airport will arrive at 10am on Sunday and then we will make the adventure of "Gavin and his and his 10 tubes, pumps and monitors going though airport security."  Even though I'm a bit anxious about all of it -- I'm totally up for an adventure!


Thanks to all who have helped us though yet another week long stay at hotel duPont.  We love you all and are so glad you are apart of our lives.  Enjoy the photos of our time outside this evening.  Who says a little boy in a wheelchair can't ride a bike?  

If you can't ride the bike -- let the bike ride you!

Thursday, May 14, 2009



Sleep is a beautiful thing and Gavin and I both got a few hours of blissful sleep last night. Gavin did great down in the PICU and they were able to place a femoral line and pull out the old infected line. They gave him two units of platelets yesterday and his count is now up to a whopping 30 thousand --every bit of progress counts! Gavin is actually doing much better -- no fevers and seems more comfortable. His abdomen is still very swollen, though the lasix yesterday seemed to relieve some pressure.

We are still figuring out our trip. Make-A-Wish is amazing and will reschedule with no issues or difficulties, it's just that we have a little four year old girl who is more than excited to go see Cinderella's house. For most children, I would say it's no big deal we will just postpone a week or two -- but we are talking about a little girl who's life is always mixed up and confusing, moving the trip is just one more thing to disappoint her.

We are going to make the decisions today. MAW said they have limited availability for next week. It looks like things are improving and there is a very good chance we would be out of here in time but we need to see how well Gavin is going to bounce back.

But -- Gavin does incredible things. I've seem him go from the bad to worse to looking great in a matter of hours.

We'll see.

Wednesday, May 13, 2009

Rough Times...


Gavin is really having a hard time.  Last night he continues to spike fevers as high as 105, with intense chills and abdominal pain.  His spleen and liver and both now distended down into his pelvis causing extreme pain.  Despite the platelets he receives yesterday his numbers dropped even lower.

The plan today is to give ore platelets, more albumin and more lasix.  We will be leaving soon for the ICU where we will pull his central line, which grew out another set of Gram Negative Rods within 8 hours of last nights culture.  They will then attempt to place a Fem line in the PICU and hopefully we will be able to return to the floor tonight.

Things are not looking good for our trip. Needless to say we are all feeling a bit defeated and very disappointed.

Tuesday, May 12, 2009


Gavin was doing better yesterday afternoon so we were able to come up to the regular unit late last night. He had received a blood transfusion as well as a calcium and potassium rider. Early this morning he got pretty sick again and spiked another high temp. Things are looking a bit more complicated that I thought they would be as now he is swelling and looks like he may need some platelets today as well as albumin.

Last night his one luman of his line clotted and we were forced to use TPA, a clot buster, on the line. TPA and infection do not mix and it run a high risk of blowing bacteria that was in that clot all through the blood stream, which is most likely what happened last night.

I'm trying to stay positive but I have to admit that I'm a bit nervous for making our trip. I guess we'll see. Knowing Gavin he could be back to his happy self in a few hours.

Thanks for keeping us in your prayers!

Monday, May 11, 2009

In The PICU...

I wanted to quickly update to let everyone know that Gavin was admitted to the PICU last night for sepsis. He is doing better this morning but last night was scary. His fever spiked over 105 and he was showing us signs that he was very sick. His cultures have already grown out positive and all his blood counts are very low. Hopefully we will be able to go up to the floor today.

Only five more days until Disney -- lets pray we can get out of here in time!

Wednesday, May 6, 2009

Mini Bowling...


So far so good -- as far as the infection goes.  Gavin is doing pretty well -- his hemoglobin is up but not really where we would like it to be.  Dr. Raab said he will give him some more blood right before we leave, if not sooner, to make sure he has enough energy to be able to tolerate the fun at Disney.  


Today we had  a fun day with Aunt Jenny.  We spent the day mini-bowling, which was fun for all of us!  Did I mention that we only have 11 more days until we leave for Disney?  We are all so excited and tonight our Make-A-Wish volunteers will be coming to our home to make the official presentation and give us all the details of the trip.


Please pray that Gavin can stay strong these next few weeks.  He is doing so well -- it's almost scary.  We are so used to living is crisis, it's actually an adjustment both physically and mentally to living a stable life.

Monday, May 4, 2009

These Eyes Say So Much...


It is on rare occasion that we are able to see Gavin's eyes in a photo, which I suppose is the case with any almost three year old!  When we do capture those eyes -- wow, they say so much.  Sometimes I really want to know what goes on in his little mind, and then other times I am so scared what he might actually say.

Gavin is doing pretty good.  The antibiotics are obviously doing their things.  He is fever free and seems to be feeling pretty good.  I'm am anxiously waiting for the day to progress and see if there are any calls from duPont saying the cultures are still positive.  

Fingers crossed -- Prayers said.

Friday, May 1, 2009

Positive Cultures...

Aw man. 

It's been over two months, which is huge progress, but I'm sad to report that Gavin has an infection. He is pretty miserable spiking fevers over 104.  Right now we are at home with antibiotics but if things get worse we will head to duPont.  

Please pray that Gavin can find rest and comfort and he can kick this bug fast.