A Different Child

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Last Friday, Brian behaved like a trooper during his fourth endoscopy in just over a year.  He bounced into the waiting room, allowed the nurse to put an identification band on him, and did not cry even once when they did his vital check.

Just like in September, the procedure went off beautifully, and I was by his side when he opened his eyes.  Thankfully, unlike last time, Brian’s blood sugar remained normal and there was no need to urge him to drink lots of formula when he awoke (of course, I did ask the anesthesiologist to make sure Brian had plenty of anti nausea medication – the nice man was feeling generous and offered to give him three different types!).  When we arrived back at the hotel, there was no vomit to clean up or baths to be given.  Brian went about his life like it was a normal day.

The GI doctor, who performed the scope, told me things looked good and any possible areas were biopsied.

Then the waiting game began.

To distract ourselves, I focused on packing up our hotel room, and Brian focused on pulling everything back out.  It was a tedious process.

But we still found time to have fun during our last few days here.

My cousin was gracious enough to rake the leaves in her backyard into giant piles.  Brian proceeded to bury himself, run through and throw the leaves in various directions.  It is one beautiful memory that is difficult to recreate in Phoenix.

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On Tuesday evening, my sister arrived to help bring us home.  It felt like a huge weight was lifted from my shoulders when I finally saw her.  It has been so long and I don’t think I realized just how much I was missing her in my every day life.

With my “Time to Leave” plan in full motion, I waited for Brian’s appointment to arrive.

Thankfully, the test results are in our favor!  Apples are in for the long haul!

Brian was beyond helpful with his allergist, even going so far as to remind her which tools she needed to use to check him.

When it came time to do skin tests, his demeanor was not as accommodating.  I think the process of holding his arm out straight brought back flashes of IVs and hospital stays.

We decided to test lima beans (sorry, dad) and white potatoes to see if there was an obvious reaction.  At the last minute, Dr. Brown included lamb as a potential protein in his diet.

My sister said it best with, “Maybe he is supposed to be a vegetarian,” when Brian showed a strong reaction to the lamb.  Now all we have left to hope for is chicken, which won’t be trialled for quite a while still.

A negative reaction to white potatoes and lima beans means we have two more potential foods to try over the next couple months.  I knew going into the appointment that I wanted to add white potatoes, but I won’t decide on the second food (either bananas or lima beans) until we return home.

Once we knew the foods to try, the nutritionist came in to discuss Brian’s current input.  He is far below the caloric intake she would like for his formula.  In order to increase calories, each bottle must now be six scoops of formula to eight ounces of water, concentrating it even more than before.

If over the next couple months Brian does not increase in weight or begins to refuse his formula, then a feeding tube will be discussed.

Before we left, we had an appointment on the books for February 11 with the EoE clinic.  Brian will have another endoscopy a few days before the appointment to see if his new foods are causing an eosinophil reaction.

We left the appointment and headed straight to the FOP Lodge, where I knew I could get my hands on fresh french fries.

Through this whole process, Brian has consistently asked for one thing…french fries.

I put the order in (side note…the nutritionist is not worried about the oils, as long as he doesn’t react) and Brian began to demand that I “go get them, now!” over and over until the fries finally arrived.

Saying that Brian morphed into a different child is an understatement.

A huge smile took over his face as he began to shovel fries into his mouth. Suddenly, he was full of kisses and hugs for the people around him.  He climbed up to his game at the bar and graciously shared his fries with Uncle Neil, along with everyone else who stopped to fawn over him.  People who have watched for the last three months were amazed as Brian babbled endlessly and jumped into the photo booth for multiple picture opportunities.

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It is amazing what a basket of fries can do.

At the end of the night, Brian even allowed Mr. Thom to put him in his carseat.  For the first time since we met in August, Mr. Thom was speechless.

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Thumbs Up for French Fries!!

It was the perfect way to say goodbye to the men and women who have gone above and beyond to make us feel at home.  I am going to miss all of them more than they know and will be counting the days till I can see them in February.

Now, Kelly and I are checked in for our flight tomorrow morning.  We are going to take one last tour around our grandparents’ neighborhoods and visit with family tonight before boarding a plane very early Friday.

It feels like Brian and I have been here forever.  I cannot wait to return home, but it is bittersweet to say goodbye.

But, like I told my cousin yesterday, we will be back.

This is not goodbye, just see you soon.

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Control

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I get it.

I am not in control.

I thought I had everything planned out perfectly.  I guess I became too confidant, because God reminded me that I am not calling the shots.

Brian was supposed to be having an endoscopy this morning.  Unfortunately, he came down with the early signs of a sinus infection the beginning of last week.  Still optimistic, I took him to an Urgent Care.

I left the visit stocked with the necessary over-the-counter remedies to combat Brian’s cold and an assurance that he would be fine for his scope.

Then Friday morning he awoke with a high fever.

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I gave him Tylenol and monitored him throughout the day.  His cold was gone, but the fever was persistent.  When he awoke Sunday morning, his fever was high and he complained of a pain in his neck.  Unlike previous illnesses, I could feel that one lymph node was larger than the other and it hurt him when I touched it.

We jumped into the car and headed to the emergency room, where they told me to continue to monitor his fever and the color and size of his lymph node.  Secretly, I was holding out hope still that he would be ready for his test today.

When the nurse called to give me prep instructions yesterday, I had to tell her about his fever.  After discussing it with a PA, it was determined that the best course of action was to delay the endoscopy till Friday.

Now everything is thrown off.

I had it planned out perfectly.  The test was today, doctors’ appointment next Wednesday, with the results, and flying home on Friday.  I’m starting to think I jinxed myself by reserving plane tickets.

Of course, as I suspected, Brian woke this morning fever free.  I have kept him inside to avoid the rain and chill outside and to protect him from any other health issues before Friday.

Brian will undergo his fourth endoscopy on Friday to determine if he is allergic to the apples and pears (mostly apples) that he has been eating the past two months.  If the test comes back negative, I will be able to continue feeding him apples and add a couple new foods to the regimen.  If it is positive for eosinophils, then apples will be removed from his diet.  Then we will repeat this whole process all over again in two months.

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I will meet with his allergist and nutritionist next Wednesday, the 18th (please pray the results are in by then), and we will put a plan in place.  I looked over the possible foods and have narrowed down my list. The nurses will perform skin tests to make sure the possible foods are safe, and then we will begin trialling them one at a time.  His allergist will schedule a follow-up endoscopy for late January, and Brian and I will return to Philadelphia to see if he is reacting to the new foods.

Then, on Friday, November 20, Brian and I will board a very early flight to return home.  Thankfully, my amazing sister is flying out here to help me get everything organized.  We have been gone for twenty-two weeks (twenty-three when we leave finally)…154 days…over five months.

I am ready to go home.

While Brian entertains himself with trains, cars, and other toys, I am doing my best to start packing away the items filling our hotel room.  I have suitcases half packed, boxes to donate, and boxes to ship.  It would be a lot easier if Brian would stop unpacking the boxes and suitcases, though. 🙂

Some think I am crazy, but I will be hosting Thanksgiving the week after I return and my annual “Candles, Christmas and Cocktails” open house the week after that.  I cannot wait to see my family and friends through those two events.  Hopefully, I will begin to feel more like myself.

Last night, Brian clung to my arm while he slept.  It is hard to imagine not sharing a bed every night when we return home.  Believe me, I am thrilled to put Brian back in his own bed and have as restful a night sleep as possible, but I’m also terrified.

Brian and I have found a comfortable routine to our days and nights.  We only need to worry about each other.  Bringing Matt and Addi back into the mix will be difficult at first, but I know we will find our groove before long.

I am excited to be home in time for the holidays.  This is my favorite time of year and I savor the time with my family and friends.  I am missing out on far too many things happening at home, and I know home is where I need to be.

Still, Brian and I have a plan.  Unless I find another option, we will return to CHOP every two months for endoscopies and follow-ups with his allergist here.  We will continue with the plan, and hopefully, things will begin to fall into place.

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Of course, I have his birthday planned out already.  It may upset family members, but Brian’s party will be all about Brian.  I will only serve food he is allowed to eat, which may make for an interesting selection.  Brian will not be able to partake in Thanksgiving and Christmas delicacies, so his birthday party will be just for him.  I would do anything for my Little Man.

Thank you to our family and friends for supporting us along the way, the FOP in Philadelphia and their president for adopting us and taking us under their wings, Mr. Thom for treating Brian like his grandson and spoiling him rotten, those who have hugged me when I pretended to be strong and given me more credit than I deserve, and for all the love from across the world.

Thank you, God, for reminding me that I am not in charge, and helping me to never forget just how blessed we are.

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