What Can You Handle?

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”    ~ Mother Teresa

Stanton continues to have a respiratory crash every three weeks.  It's difficult to handle these illnesses so close together and yet so predictable.  We have one week of horror, then two weeks of good.  This time around it's put us in the hospital.  Stanton has pneumonia that he just can't shake.  It seems to be lingering in his lower left lung.  It's sad to admit, but being at the hospital has been a bit of a break.  Here, I'm only mom.  My only job is to comfort my child.  I can focus all my energy and efforts on him and his needs.  This, I can handle.  The nurses and hospital staff take care of everything else....the medication, the breathing treatments, even the food and clean sheets!  I am thankful to be in a place that is comfortable so I can focus on my job...being mom.

The pediatrician on call has witnessed what I deal with on a daily basis:  the fight to get Stanton to take anything by mouth.  One sip of apple juice at a time; the eye dropper of water; the throwing up of forced medications, the refusal of food.  He's really had nothing to eat or drink since Saturday afternoon and is, therefore, IV dependent while here.  Today, however, he's finally reached the bottom of an apple juice box.  It took all day - but he did it! I hope this is the start of a better night and day tomorrow.  We can't go home until he begins drinking and taking his formula (Elecare).

After watching our oral battle, the pediatrician has raised some tough issues for us to consider and pursue.  We first will see a pulminologist at Tulane.  That leads to a series of "What If" scenarios that I'm not ready to share.  The pediatrician wants to talk to our primary pediatrician about making a call to our team in Cincinatti.  The doctor feels it should be a phone conversation, not just a faxing of records.  This again leads to some difficult choices and scenarios that we must face.

Am I ready for this next, difficult journey?  Can I handle what lies ahead?  Why does God trust us enough to push my family down this stoney path? 

 "It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

What's new?

I know, I know….my past few posts about Stanton’s health have been the same story!  We continue to face the same issues – nothing health wise has really changed.  He’s loving school and really loves being a big brother to his 5 week old baby sister!  It’s been interesting trying to balance his health with a newborn baby girl!  So many have asked what’s next?  Where we will push next; what doctor we will visit.  I am just recovering from having a baby….and am not ready to travel with one so little and the other chronically sick.  I do have some ideas of where I’d like to push and investigate next, I’m just waiting for baby girl to have some vaccines and for us to get through the holidays.

Stanton awoke on Halloween morning with a terrible cough.  He spent the entire day sounding like an old man; coughing and sputtering.  I gave him extra breathing treatments trying to keep him going so we wouldn’t miss trick-or-treating.  That night we made it to my sister’s for a party and trick-or-treating.  Stanton made it to about six houses before needing to sit in his stroller.  I literally had to talk him into knocking on two more doors before we decided to call it a night.  He had fun while it lasted, which wasn’t very long.  When he has a respiratory flare up, the wind is truly knocked out of him and he simply has zero endurance.

As a mother, my heart is broken for my son.  I realize he doesn’t know things should be any different, as they’ve been this way for his whole life.  I acknowledge that I am in the midst of grieving this reality.  I wish he knew what it felt like to really feel good.  I’m not sure he’s ever had a day where he felt “normal” inside.  If it’s not his cough and difficulty breathing, it’s a pain in his stomach.  If it’s not his stomach, it’s a reflux kind of day.  If it’s not reflux, it’s constipation.  If it’s not constipation, it’s a day of blow-outs.  If it’s not a day of blow-outs it’s a day of low energy. If it’s not a day of low energy, it’s a day of unexplained hives.  If it’s not hives, it’s a hunger strike kind of day.  And so on…    

I used to pray and hope for healing, but now I find myself asking simply for today.  I pray that today Stanton will have a good health day.  I pray that today, maybe a doctor or new idea will present itself.  I pray for energy to continue aggressively fighting this battle.  It’s hard to look past today, for in the past when I have, I’ve just ended up disappointed or with more questions.  So, to survive all of this with some sanity, I have learned to take things one day at a time.  As I’m typing this, I realize it sounds depressing…..which I’m not!  This letting go has  really allowed me to enjoy just being in the moment, which has been so freeing for me! Before Stanton I was a planner and very “type A.”  He sure has taught me to really let go, go with the flow and be flexible!

Speaking of being flexible – he’s awake from his nap, crying and gagging…I’ll post more when I can!

Life with Two

I'm happy to announce that Stanton LOVES his new little sister! He pulls everyone who stops by over to her and says "look at my baby sister!"  He's constantly wanting to love on her and kiss her.  Here he is meeting his sister, Miriam Sage, for the first time.

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