The Reality of a "Vacation"

In December, 2009, we planned and booked a vacation to Disney World in Orlando, Florida for June, 2011. Stanton turns three on June 12, 2011 and, back in 2009, we thought this would be the perfect time to go. For starters, children get in FREE until the age of three and this is Stanton’s official last week of being a two year old. We also must have really believed what the doctors kept telling us - that most kids outgrow the developmental delays, need for aggressive therapy, specialists, reflux disease and needed nebulizer treatments.

So – here we are in Orlando – with the special medical formula, Elecare; with the erythromycin for Delayed Gastric Emptying; with the nebulizer disguised as a dragon and two inhaled steroids that go in it; with the prevacid compound for gastroesophageal reflux disease; with the steroid cream for the unexplained recurrent hives; with our undiagnosed, sick little man. What we were thinking – right?

After arriving Sunday, we woke up Monday ready to hit Hollywood Studios. Afterall, Stanton loves all the Pixar films and this is the park where most of those characters hang out. Stanton awoke with other plans. His tummy hurt and all he wanted to do was lie around, watch tv and cry. Everything was a fight….changing his diaper and getting dressed was clearly an episode straight from those fake wrestling shows. Somehow, by 9:30, we were in the car and on our way with our unpleasable child in the backseat. Stanton cried as we put him in the stroller, cried as we entered the park and had our bags searched, cried as we checked his medications and formula into the first aid center, cried as we looked for the dang Toy Story Mania ride. The crying and awful behavior escalated as we stood in line for Toy Story. He hit himself, others around him, kept falling to the floor, screaming, etc. We created quite the in-line entertainment for the hundred or so families…although I’m sure it wasn’t what they wanted to witness. Disney is supposed to be the happiest place on earth – right?

After surviving Toy Story Mania, we headed back to first aid to calm Stanton down. I washed his face, got him to drink a bottle, changed his diaper and just sat. The nurse suggested we try the Honey I Shrunk the Kid playground so loaded up our screaming child and headed that way. I really didn’t know what to do but keep walking. Everyone we passed turned to watch Stanton’s spectacle - a parade of screaming, kicking and gagging. Once inside, Stanton actually pulled it together and played for a good 20 minutes in the playground. I sat on a rock and focused on holding back the dam filling my eyes and soul.

Across the way from the Honey I Shrunk the Kid playground was a stunt car race show which was to start in 5 minutes. Stanton LOVES cars and crashing and fire on TV so we thought we should try it. The wait in line was slightly better than Toy Story only in the fact that he kept his hitting to himself. We lasted one stunt, then had to get up and leave. We were all done for the day at 1:30.

As we entered the first aid building, the sweet nurse that had been helping us all day saw it on our faces. “Leaving all ready?” she asked. My eyes brimmed with tears as I nodded. She put us in a quiet room and we let Stanton pull himself together, drink some more formula and just be. The nurse then told me we needed a disability access pass for our other park days. She was surprised we had not already done so. So, we walked next door and completed that process before leaving the park.

On Tuesday we didn’t go anywhere or do anything. Stanton continued to cry and complain about his stomach. He had several blow outs Monday and Tuesday and woke up Wednesday with his trademark bright red whelps on his checks. He goes through this very cycle about every three weeks – which I suppose has fallen on our vacation week. However, once the whelps appear, Stanton is happy again. So, with a happier version of himself, we headed to the Magic Kingdom Wednesday night. Because of our disability pass, we were able to conquer an average of four rides per hour. Thank you Disney for being so amazing and accommodating to families like ours!

I think the pictures tell the rest of our Wednesday….

Don't panic. I'm with you.

There's no need to fear for I'm your God.

I'll give you strength. I'll help you.

I'll hold you steady, keep a firm grip on you.

Isaiah 41:10

This verse became my mantra this week! Stanton has been very sick – again. Monday, Tuesday and Wednesday consisted of me literally holding Stanton pretty much all day and night. This bout started as always with a clear runny nose and sneezing. Within 24 hours, Stanton was very lethargic and having a hard time breathing. In the pediatrician’s office his oxygen level read 45% (normal is 100% and the hospital admitting rate is 40%). Several breathing treatments later and armed with prescriptions for antibiotics, steroids, and two different medications for his nebulizer, we finally headed home. Every two hours I gave Stanton a breathing treatment, until that night, around 11:30, our nebulizer decided to stop working! Getting through Tuesday night was very scary. It’s hard watching your child struggle to breath and not be able to do anything about it. So I held him, paced, rocked, sang, prayed and cried.
Somehow we survived the night. Early Wednesday morning our dear friend Kim brought over her daughter’s nebulizer for us to use until we could get a new one. I’m not sure Kim realized what a blessing that was for me – but at that moment, I realized that we would be okay. A couple of breathing treatments later, Stanton finally drank an ounce of juice and played a little. I traded in our broken nebulizer for a new one. The new one is a purple dragon! It’s really cute. It even came with a castle carry case – very creative!
We made it to our appointment with Dr. Niolet, our fourth allergist. He said he must agree with the other allergist we’ve seen and doesn’t think Stanton is dealing with allergies. He feels Stanton’s immune system is low and he is having asthma type reactions to simple colds or seasonal allergies. So he gave Stanton an immune boosting shot for pneumonias and put him on a daily breathing treatment. We are to try this for a month and see how it’s going. If things don’t improve, Dr. Niolet said we would then investigate environmental allergies. I guess we’ve waited three years, so another month won’t hurt.

Today I received a letter stating Stanton’s MRI was “normal for a child his age.” I should be relieved right? And I guess deep down I am….but my mama gut still thinks there is something that connects all of Stanton’s issues…we just can’t seem to find it. And maybe it’s not for us to discover. Stanton is still Stanton and our precious boy!