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!

MRI complete

Today Stanton had his MRI.  He was not happy to be at the hospital and panicked a bit on the way in, but once we settled in the waiting area, he calmed down and played.  The staff was great and took his history of vomiting and aspirating all into consideration.  They really did go out of their way to keep Stanton happy and comfortable.  I was able to go into the MRI room and put him on the table while the anesthesiologist put a "space rocket" mask on him.  He was out within 10 seconds, then I had to leave and wait.  The procedure took about 30 minutes and we met a screaming Stanton in the recovery room.  He stopped crying as soon as I picked him up and rocked him - so sweet that even that drugged, he knew his Mama.  We stayed in the recovery area for about an hour and then made the trip back home.  Stanton stayed pretty grouchy until around 4:30 when he finally decided to drink some his formula.  (He hadn't had anything since 2:00 am).  He's been happily playing since then!

We won't have any results until the end of the  week - and that's really when our doctor will receive the results. As soon as I hear something I'll let you know.  Thank you friends for your sweet words of encouragement today!

Ginger

New Ventures Ahead

  I’ll go ahead and admit it …. the past four weeks have been tough!

Stanton continues to be trapped in this cycle of having a few good weeks…then the mysterious rash appears…then the grumpy, un-pleasable Stanton emerges – which inevitably leads to major reflux flares or upper respiratory illness or the combination of both! Currently we have the pleasure of dealing with the combination of terrible reflux and a sinus infection. Yes, joy of all joys!

We have frequented our pediatrician’s office an average of every 3 weeks since November. We love our pediatrician, Dr. Schepens, but I’m sure she would love not seeing us so often. We were there just yesterday for the sinus infection and I expressed my frustration with this pattern we can’t seem to crack. She said all of his symptoms point to allergies. Well, we’ve seen three allergists: one local who laughed us out of his office, one at Ocshner’s who did a ton of blood work all related to food allergies and immunological issues, and one in Cincinnati who did the skin prick testing for food allergies. Dr. Schepens pointed out that no one has tested Stanton for environmental allergies and that we should explore and rule them out, so she has referred us to another local allergist. He has only been in the area for a couple of years and she has heard lots of good things about him. So, on June 1st we will try again to communicate with our fourth allergist, Dr. Niolet.

Our team of therapists at the Children’s Center, in Hattiesburg, also think all of his symptoms point to allergies! So, as of this week, we are now on a strict elimination diet. The therapists took the time to contact all of our local therapist and our team in Cincinnati before recommending the diet. Everyone is on board! Basically, Stanton will just have his formula and medications for 10 days. Then, we will reintroduce one preferred food every 4 days. During this time I have a very detailed chart to fill out daily and submit. I must chart when he drinks, how much he drinks, when he gets medication, when he throws up, if a rash appears, when his behavior changes and when he has blow out diapers. Our team feels this could reveal a sensitivity to a medication or a food and will help rule out why he is continuing to feel bad and vomit so frequently.

We’ve also learned that Stanton’s MRI has been scheduled for next Tuesday, May 24th. Please keep us in your prayers as we aggressively venture down these new paths. It is a lot of information for us to keep up with - but we will do whatever it takes to make our little Stanton feel his best!

"The Lord is good, a Strength and Stronghold in the day of trouble; He knows (recognizes, has knowledge of, and understands) those who take refuge and trust in Him." Nahum 1:7

With thanks and love,

Ginger

MRI

  Last Monday I took Stanton to see his developmental pediatrician, Dr. Anderson. She is so nice and always really connects with Stanton. She said that she just ran across some recent research about the digestive system. Here’s what I remember from her description of the research: The digestive system is the only system in our bodies that can work apart from the body. The only way the digestive system communicates with the rest of our body is through the vagus nerve. The vagus nerve begins in the brain and stimulates both the lungs and the stomach. The research suggested that patients who were being treated for gastric issues, should instead be treated for a neurological disorder. That quite possibly there is a misfiring from the brain to the digestive system via the vagus nerve. Hmmmmm…..interesting stuff isn’t it? Okay – I’m totally a nerd, but also the mom to a child who takes a variety of medications for the various issues in his digestive system. He takes something for his upper esophagus, something for his stomach and something for moving things on out. Wouldn’t it be great if all he needed was a medication for his brain? I don’t even know if a medication like this exists yet, but the idea of it all really has me intrigued.


So – Dr. Anderson is in the process of setting up a sedated MRI for Stanton. She said that she is really interested to see what it reveals and feels it could show something. She reminded me that he has more going on than just the feeding and digestive issues….low muscle tone, mild sensory issues, and some facial features that suggest a disorder. All of this could be revealed through the MRI.

I’ll keep you posted as things progress!

Ginger

Happiness is a Happy Gut

The need for breathing treatments finally came to an end on Sunday! It’s a relief to see Stanton breathing naturally and comfortably after his latest battle with pneumonia. 2011 has been a year full of upper respiratory issues and pneumonias for our little man. With each one, I’ve noticed that about a week after starting antibiotics, he breaks out in a rash. The rash begins around his ears and stretches down to his upper chest. Just tiny small red raised dots. With each episode, I’ve come up several possible reasons for the rash: playing in the grass; wearing a hand-me-down shirt that I’m not sure I washed; soap from his bath; etc. The last time I noticed the rash, about two weeks ago, I took him into the pediatrician and she agreed it looked like an allergic reaction to the antibiotic. With this latest illness, she put him on a different antibiotic, a non-penicillin version, called omnicef. Stanton broke out in the rash on Monday morning. This time around I finally think I’ve uncovered the mystery! Each time he is sick, he is on a combination of antibiotics, steroids and breathing treatments. Usually the steroids are only given for five days, the breathing treatments for seven or eight days, and the antibiotic is for ten days. The rash appears on or around day six…exactly 24-hours after his last steroid dose…..steroids are sometimes given to suppress allergic reactions. So, Stanton’s pattern fits! His reaction to the antibiotic is suppressed by the steroid, then surfaces once the steroid is out of his system! I must confess, I feel like a really slow Sherlock Holmes. I called and left a message for our pediatrician with this information, and am curious to see if she agrees with my “scientific” observation. I stopped giving him the antibiotic on Monday, but, as of today, Stanton’s rash has crept up his neck and around his chin. The spots on his chin seem to be a bit more splotchy. So – today I’m continuing my experiment. I gave Stanton a left over dose of steroid this morning. I hope the rash is gone by this afternoon….but if not, I’ll call the pediatrician and make an appointment. It’s nice that everyone at her office knows us by name, but I also understand that this means we frequent her business way too much!

Another unfortunate side effect of omnicef for Stanton has been his stomach. The possible side effects list that it could make your bowel movements red and more frequent. Poor Stanton reacted exactly that way! So, on Monday, when I stopped the antibiotic, I didn’t think to put him back on Miralax (his usual daily regimen). I felt that his stomach could use some time to recover. This decision completely backfired on me Tuesday. We went to our Kindermusik class and I noticed him withdraw from the group and flap. He only flaps like this when he’s about to throw-up or when he’s constipated. Since he wasn’t moaning or crying with the flapping, I guessed he was constipated and made a mental note to give him Miralax when we got home. After Kindermusik, we go straight to speech therapy. We made it into the waiting area, talked to everyone and read a book. As soon as Stanton stood up to put the book back, he started screaming. The kind of scream you hear when a child falls off the monkey bars…that I’m really hurt and something is broken cry. His face became as red as I’ve ever seen it as he doubled over and grabbed his knees. His face started sweating as he screamed and gasped for air. I got on my knees and told him to hold on to my shoulders and squeeze. He clung to me, unable to stand up straight and screamed. This went on for about ten or twelve minutes. All the staff and therapist kept coming out to make sure we were okay, shocked to see him doubled over in pain. A speech therapist brought us a wet washcloth and sat with us on the floor as I tried to just hold him and comfort him the best I could. The sweet office manager, who Stanton is always flirting with, started crying along with Stanton saying she wished she could do something for him. Stanton has been like this before – always when he’s severely constipated, and usually in the privacy of our own home, which just hasn’t happed in a long time thanks to Miralax. He finally calmed down enough for me to carry him to the car as a therapy student carried our stuff for us. I let him continue to push and squeeze me at the car until finally he pushed out a hard golf-ball size rock. Immediately he was happy and better! I changed him and got him home and yes, got a dose of Miralax down him.

So many times we’re told to follow our “gut” instinct or “go with our gut.” In Stanton I clearly see the emotional connection the gut obviously has with our body and mind. When his tummy is happy, he is happy…and so am I.

 Ginger

Double Dose

In the past, when Stanton gets pneumonia, it’s usually just in one lung. Well, this unfortunate go around shows fluid in both lungs! Poor little guy just can’t catch a break….or his breath! He just recovered from pneumonia two and half weeks ago; I hadn’t even packed his nebulizer back in the closet. As he grows, at least he is becoming more compliant with his breathing treatments, which used to be all out torture sessions. Today he came up with the idea that his monkey, Mitzi, should have a breathing treatment too.

 This is how we’ve spent every two hours since Saturday night.

In days as long as these, I really love the message found in Romans 8:18, “ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

Hmmmmmm…..what will Stanton become? Will we one day look back and see this season as just a blur in his life? How will Stanton make a difference in the lives of others? What glory will be revealed within him? When I consider all the amazing possibilities before him, I get excited and know with confidence that we will endure this time and Stanton will indeed grow into all that he is to be.