Every Three Weeks

Well...I'm bummed to say that Stanton has not been able to break his cycle of crashing every three weeks.  This last episode was exactly 3 weeks to the day!  Our pediatrician says it's got to be allergy related as whelps and rash indicated a histimine response.  But I have to wonder, what kind of allergy shows up in a cycle and only rears it's head every three weeks?  To me, it feels like a virus or hormonal or immune related.  Since we've been to four allergists and three immunologists, I do feel a bit flustered.  I've spent some time searching his predictable pattern on-line (whelps on face -- then runny nose -- then sneezing and allergy eyes -- then rash on torso -- then violent vomiting -- then drop in oxygen levels) and so far am empty handed.  It seems like the "rash" for everyone else in the world could follow a common cold or leads to terrible things like seizures and death.  Neither of which we've experienced; thanks be to God!  I'm determined that our consistent clues do mean something more.  I've just not found the right article, research or specialist to investigate the pattern.

He's happy once again this week, but still has a hard time catching his breath when playing as boys do.  Here's a recent picture of our sweet "Bubble Boy."

Stanton is very excited about becoming a big brother! Our baby girl is scheduled to arrive on Friday, September 23rd!  Stanton asks everyday when I'm bringing her home. Our family sure appreciates everyone praying for us, sending positive energy our way, thinking of us - whatever your style is.  My heart's desire is that baby girl arrives into this world strong and healthy and that big brother Stanton stays well for the next couple of weeks as we transition home with the new baby. 

"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace." ~ Numbers 6:24-26

Partners in Crime

It’s official.

I know I shouldn’t feel surprised or disappointed….but I am a bit. I’m only human and the momma after all. My educated brain knows that 60% of kids with severe reflux have it, or that’s what all the research I find on-line suggests. I mean, we’re already treating Stanton for it with a daily breathing treatment called Pulmicort. Looking back over the last three years, we’ve treated most of the classic symptoms and flare-ups, however, each doctor, ENT, Immunologist, Allergist, Gastroenterologist, etc. we’ve seen has tip-toed around calling Stanton’s chronic lung/breathing issues what they really are….until today. ASTHMA - today Stanton received a diagnosis of asthma. Asthma and Reflux are truly partners in crime.

Since July 30th we’ve been to the pediatrician three times. On July 30th we went after Stanton crashed. This is what I’ve jokingly describe as his “time of the month.” Every three to three and a half weeks, the bottom just falls out from under Stanton. The mystery dots appear, the refusal of oral intake begins the clear runny nose kicks in, the vomiting eventually explodes and his oxygen levels plummet. On August 10th we went for an ear infection and increased reflux. Today we went for the right on time three week crash.

surviving on Mommy and Daddy's bed

The pediatrician obviously knows our situation and history and understands that getting a prescribed antibiotic down him is impossible. So, poor Stanton received a big shot of rocephin. We have all the inhaled and dissolvable steroids at home…so that’s where we are now, continuing to alternate the breathing treatments between Pulmicort and Xopenex. I’m hoping that Stanton will begin drinking something again by tomorrow so I can hide the dissolvable steroids in his Elecare formula. That’s the only way to get them down without a huge throw-up episode. (He hasn’t had any Elecare since Saturday around lunch).

Once we are over this episode, the pediatrician wants us to increase his daily Pulmicort breathing treatment from once to twice a day and see if that makes a difference. He also suggested we start watching to see if Stanton’s episodes become more frequent now that he is in school. If they do, the pediatrician wants us to seriously consider taking Stanton out of school. He said it’s his either his social development or his health and right now we may not be able to have both. UGH!!!! I thought we had finally arrived at something normal!!!! And Stanton really LOVES his pre-school. We’ve had zero transition issues. So I’m keeping my fingers crossed that it won’t come to this.



A couple of days before Stanton crashed



Connect the Dots

As I dressed Stanton for school this morning, I noticed the dots. They’re back! All over his torso, sides and slowly spreading to his back. I looked at the calendar and guess what? It’s been three and a half weeks since the last dots occurrence. It really is every three weeks or so. He was super irritable and weepy this morning. However, he wanted to go to school. With no other symptoms, I took him.

Stanton was excited when he walked into the school. He ran right in his classroom and hung up his backpack! When I picked him up he looked tired, but was still all smiles. He even gave every child a hug before leaving. His teacher said he had a good day. When I got him in the car I looked and noticed out of the 10 ounces of formula I sent, he only drank 2. No wonder he seemed tired and lethargic…..I thought. So, he drank another 2 ounces in the car on the way to speech therapy. At therapy he began complaining that his ear and head hurt. Sure enough, his left ear is draining.

As soon as we got home he sat down at our kitchen island and started profusely vomiting…..everywhere. Once I calmed him down, got his wet clothes off, sponge bathed him and settled him down on the couch in just a diaper, he fell asleep. Thankfully his draining ear was facing up, so I dug around in his cabinet and found some left over antibiotic single dose ear drops and gave him dose. I haven’t decided if I’ll take him to the pediatrician or not. I guess I’ll see how the rest of the afternoon goes and if need be, take him in the morning.

It’s only his second day of school. Looks like he’ll miss day three. Bummer!

I wish someone, somewhere, would connect the “dots.” I feel strongly they represent something more going on inside his little body…hmmmm….

Big Boy Stuff

My last post did jinx us a bit. Stanton was very sick last week with the all too familiar upper respiratory gunk. Thankfully this episode stayed in his airway and didn’t seem to drift down into his lungs. But, we were on hourly breathing treatments for 24 hours and then they slowly faded to every two hours, every four hours and eventually only twice a day. By Friday he seemed to be back to his normal.

The breathing treatment cave

Now for our “Big Boy Stuff” news !

Stanton has successfully transitioned into his “Big Boy Bed!” He seems really proud about it too, which is pretty cute! He is sleeping through the night and says it’s “comfy.” We are in the process of painting baby girl’s room, so not all of the furniture has been moved yet. Once Stanton’s room is finished, I’ll post pictures.

The other “Big Boy Stuff” news in our household is that today Stanton started Pre-K! He went right in the classroom, said “hi everybody” and let the teacher help him find his cubby for his backpack and things. I didn’t know if I should feel proud or sad….he didn’t seem to care that I was leaving. This – my little boy who I’ve held through illness after illness for so long. He’s no longer clingy and needy. He’s becoming a little person!

He said school was fun and his teacher is nice. I asked about his friends and names, but Stanton said “I don’t want to talk about it anymore.” I had to laugh, as that sounds like something I’d say! The school sent home two worksheets from class. Both were tracing activities: tracing shapes and letters. Stanton just scribbled on the shapes page, but on the letters page, it looks like he actually attempted to trace a few with a pencil. I really pray the rest of the week goes as smoothly as today!

Enjoying his class

Progress doesn’t = Answers

Back in June, Stanton received a immune boosting vaccine called the Pneumovax 23. Because he’s had so many pneumonia episodes (19 to be exact), Dr. Niolet, the allergist/immunologist, thought this vaccine could help boost his lung function. The Pneumovax 23 is a vaccine we’ll all receive when we’re 65 years old! Dr. Niolet also prescribed a daily breathing treatment called Pulmicort, again to help Stanton strengthen his lungs. We started all of this as we set off for our Disney vacation. I’m happy to report that Stanton has not had ANY respitory issues since the first of June! This is the longest we’ve ever gone without a cold, sinus infection, respiratory infection, or pneumonia. I’ve hesitated posting this….waiting on the day I’ll eat these words…..but I think it’s all really working!

Stanton’s MRI results returned normal! We are excited to not have to venture down that road anymore. Also, although some of his genetic testing points to abnormalities, all the geneticists agree that we no longer need to continue down the genetic path. We met with a metabolic genetic specialist at Tulane and he said Stanton is a beautiful, adorable child. There are oddities both in testing results and his history, however, nothing that points to or defines a diagnosis. He predicts all of Stanton’s delays will catch up by grade school! These words were gold to a mother’s ears and heart.

Stanton still has bad tummy days. That hasn’t changed. However, his ability to bounce back after a severe vomit episode has been remarkable. I’m noticing that his bad tummy days correlate with the days he doesn’t get all seven doses of his medication (one Miralax, three Erythromycin and three Prevacid/Buffer Babies compound). Stanton is a terrible medicine taker! So, I just hide the medicine in his Elecare. This is getting tricky as we are starting to address his dependence on the bottle. All of our doctors continue to say, not to worry that Stanton is still on a bottle…he’s been through so much and is finally growing and thriving…but all of his therapist say otherwise. So I’m listening to all sides and merging ideas: we offer his Elecare in a cup, but don’t force or push the issue. Sometimes he drinks a few sips, but he hasn’t yet taken in his full caloric need through a cup. Since Elecare is his means for gaining weight and “looking so healthy” I’m not ready to really rock that boat. At the same time, I don’t want to enable a behavior that is developmentally holding him back. It’s a delicate balance for sure! Once he no longer takes a bottle, I’m not sure I’ll be able to easily hide his medication. I know I need to come up with a plan for getting his medicine down without a disguise. This will be hard for us both!

Proverbs 3:5-6 “Trust in the Lord with all your heart and lean not on your own understanding; in all ways submit to Him, and He will make your paths straight.”

Stanton will become a big brother in late September! So we are also working on moving him into a “big boy” bed and slowly introducing potty training. We are looking at pre-schools and other times for him to be independent. As I worry and plan for all these changes, I am completely aware of how they are the “normal” issues all parents face. It’s a blessing to have finally arrived at something “normal.”

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!