Investigating

After such a positive start to September, full of new tasting experiences, it’s been such a letdown to pull the nebulizer out of the closet. Since finding the right balance with his medical formula, Elecare, and medication combination, Buffer Babies, Stanton just hasn’t been sick. Oh we’ve had our fair share of illness…He spent most of his first 20 months in this world sick with 14 ear infections, 9 pneumonias, several upper respiratory infections, a couple of croups, 3 eye infections, and constant chronic diarrhea and vomiting.

This past week was a reminder for John and I that the fight for Stanton’s health is far from over. We’ve been waiting on lab results, waiting on doctors to return from vacation, waiting on the feeding clinic in Atlanta to call, waiting for therapists to confirm that his feeding issues have a medical root vs. a sensory root….I spent the end of week calling and leaving messages for his doctors at Oschners, calling the feeding clinic in Atlanta to see what the holdup is, and researching our next step.

I’m leaning more and more to the idea that before a feeding clinic can really be successful for us, all of Stanton’s medical issues need to be resolved. I’ve met some amazing moms with kids similar to Stanton through on-line discussion boards and through God just doing what He does, connecting me to folks. As I listen to their experiences and hear the cry of each mother’s heart, my cry and fight for Stanton becomes even more clear.

All this time, I’ve googled “reflux” and “feeding disorder” in a search to find help for Stanton. This week I instead searched for “pediatric digestive disorders” and found a wealth of information I had never before come across. I found a list of the top programs: 1) Cincinnati Children’s Hospital, 2) Children’s Hospital Cleveland Clinic, 3) Children’s Hospital Philadelphia, 4) Texas Children’s Hospital, 5) Denver Children’s Hospital. So, I’m going to start at the top of this list and spend some time contacting these top rated programs. My hope is that we can somehow get Stanton in with one of these specialty centers.

endurance

Aspiration Pneumonia.....what a week! 

I've clung to these words and felt I should share them with you.  Because of my faith in Christ, I know His hand is upon us even in the most difficult of days.

Philippians 4:6-9
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

So I mentioned that the diarrhea began after the pizza...well the severe retching vomiting began Saturday around 2:00. He violently threw-up mos of Saturday and all Saturday night. By 3:00 am the stridor sound started. Stridor is that awful severe wheezy sound one makes when tryig to breath. We pulled the nebulizer out of the closet and started breathing treatments. One treatment every two hours. This did control the stridor and Stanton seemed to have more energy after each treatment.

By Sunday night, Stanton was still really lethargic and had fevor, so we took him to the ER. They did a chest x-Ray and sort of just blew us off. The ER doctor said it was "just a cold" and more than likely viral. Ugh! Why don't doctors listen to parents? Look at my son's history and listen to me! I don't know why the medical world can't seem to make the connection between Stanton eating, then Stanton becoming really sick!

So Monday we took Stanton to our pediatrician who said that the chest x-Ray did show a cloudy area in one lung! She sent us home with ear drops, an antibiotic and steriods....none of which stays down! The pediatrician wanted to give us 24 hours to medicate Stanton. We go back to the doctor today

To date, Stanton still hasn't eaten or taken any formula. We feel successful if we can get 1 oz of liquid in him!

That's Amore....

Things are certainly becoming more and more inticing to Stanton.  He is happy, silly and adventurous these days.  I can tell he feels better and is so much fun to play with lately. 

Stanton is becoming really curious around food - noticing that others are eating - asking to taste. At therapy we spend a lot of time playing with pretend food. He really enjoys pretend cupcakes and hamburgers! A step stool now lives in our kitchen at home and Stanton seems to enjoy helping me cook, stir, wash dishes, load the dishwasher and pull out the spices.

We played with some friends at Monkey Joe's yesterday.  When Stanton's little friend said she was ready for lunch, he actually stopped what he was doing and said "lunch."  So, we proceeded to the concessions and I let him pick anything.  I know - throw caution to the wind, right?  Well, I'm noticing that Stanton will sometimes take a bite of something, chew it up, then spit it out, rather than swallow.  It seems to me that he is really good at reading his body.  So - he picked a slice of cheese pizza.  I pulled the cheese off and let him chew on the crust with sauce.  He actually ate 6 or 7 real bites.  I think our friends were trying to make conversation, but I really couldn't concentrate as I was so intently watching my little man enjoy a slice of pizza for the first time.

He hasn't thrown-up...but the chronic diarrhea has certainly kicked in.  Every diaper has been a blow-out. Dairy sure does a number on his little system.  Again today we were at a function with pizza available.  I said, "Look Stanton, they have pizza just like at Monkey Joes".  Stanton looked at me with a serious face and said "No pizza today Mommy."  I guess he knows his stomach can't handle it two days in a row.

It's amazing to me that Stanton is growing and thriving on Elecare alone.  My sweet, precious boy.

It Starts With a Kiss

I still am not completely sure how to put this post into words....but here I go...

Stanton ate a dark chocolate Hershey Kiss on Sunday... and on Monday....and on Tuesday....
Okay - so not today, but there are so many tiny surprises intertwined in this victory:

• He hasn't thrown-up since last week - chocolate is staying down
• He requested "more chocolate" 
• I had to tell my non-eating child that he couldn't eat anymore (after 4 pieces)
• He chewed and swallowed each piece without gagging or drama
• He told me this morning that chocolate makes his tummy happy

Chocolate in his tummy makes me happy too - so happy that I can't stop tearing up just thinking about it!

Here's proof:

Mixing Medicine

We have discovered that the adult version of Prevacid works best in controlling Stanton's reflux disease. Prevacid does come in a solutab version, however, the dissolvable coating contains dairy. Stanton is Milk Protein Intolerant. All those months of dissolving his medication in water…dripping it into his mouth with an eye dropper…waiting 30 minutes to feed him…No wonder we never saw much improvement all those months he took the solutab version! So, you may be asking yourself, "how does a two year old swallow a pill?" This is where MARCI-KIDS comes in to play.

MARCI-KIDS (The Midwest Acid Reflux Children’s Institute) mission is to “optimize the treatment of acid reflux in children.” Through their research lab in Missouri, they have created a product called BufferBabies®.  This pharmaceutical aid enables us to turn Stanton’s Prevacid into a flavored suspension which we can put directly into his formula. Stanton receives BufferBabies® three times a day. It’s so nice to not have to time the giving of the medication around feeding. All we have to do is mix up the suspension each month, keep it in the refrigerator and put it in three of his bottles each day. Easy, right? Well…….

……mixing the Prevacid with the BufferBabies® powder is quite a tedious task. It took John and I several attempts before finding a system that worked for us. I’ve also had other parents, trying BufferBabies®, ask me how I mix up the medication.

First you must open the Prevacid capsules. 

John discovered that using a utility knife gently opens the tip of the capsule

without spilling the medicine beads.

Pour the medicine beads into a container.  

I like to use a creamer as it has a pouring spout.

Using a funnel, pour the medicine into the bottle.

Mix with the powder from MARCI-KIDS and the directed amount of water.

Now go play!

 

What it Takes

Today I took Stanton to one of his favorite hang outs:  Monkey Joe's!  It's a really nice, clean indoor jump land.  Now that the big kids have all gone back to school, we have the whole place pretty much to ourselves.  Today Stanton made a new friend with the one other little girl playing at Monkey Joe's.  Her mom and I got to chatting.  You know, the usual stay at home mom talk...."how old is he?"  "when is his birthday?"  "do you come play here often?"  "your child is so cute", etc. 

So many parents I meet in places like Monkey Joe's comment on how big Stanton is for his age.  I beam with pride, smile and say "yes he is." They have NO idea...it's like we have a  big secret.  Stanton is growing, finally putting on weight and looks healthy. Despite everything. Families who don't know our story can't possibly fathom what our life is like on the days we just can't seem to get out of the house.    

It takes all of this:

to play like this:

 

To hear this AMAZING video, you'll need to pause my blog music. Scroll down and you'll find my music on the right.  Just click pause and listen to what this doctor has to say.

It's well worth it! ~ Ginger

Is Enough Really Enough?

Sometimes I find myself wondering, “is there more I could do?”  In these moments I give myself a pep talk using the basic outline from The Four Agreements (by Don Miguel Ruiz). This book challenges me to use my words impeccably, not make assumptions, don’t take things personally and to do my best. Such simple truths – so difficult to stick with day in and day out. These rules for living have been stretched and tested this week.

Stanton has been fighting a slight runny nose. This is a downhill slope, for where mucus resides, the vomiting increases…always. So it’s been a real Clorox wipes, Febreze, laundry-pile-up kind of week. My sister and niece came over to play and bore witness to a pretty violent “episode.” I guess it scared her as it used to scare me. Now I know he isn’t really going to puke his guts out…but, in those early days, I used to think it was highly possible. Anyway, it must have left an impression on my sister. She and mom began poking and prodding about when would we see the GI again, what was the pediatrician doing and what was the next step. My mom also asked why I wasn’t parked in a doctor’s office insisting that someone fix my son.

It got me thinking “Am I not insistent enough with our 13 doctors already?”

1. Use my words impeccably: We are waiting on the results from the blood and urine lab work we had done a week ago. Samples were sent to Mayo and it will take a few weeks to hear anything.2. Don’t make assumptions: Are they really implying I’m not doing everything I can for Stanton?
3. Don’t take it personally: My family loves Stanton and just have his best interest at heart
4. Do my best:  I was chosen to be Stanton’s mom for a reason. I am fighting for his health. I know that everything I do and every choice I make is for or because of Stanton. I am doing my best.

If you ever feel frustrated – I recommend this great article by Jennifer Angel:


"Each day we catch a glimpse of our life. We evaluate, are we happy, and are we satisfied, what’s missing, and what do we crave? Our days are preoccupied with worry and stress, things that need to be done and bills that need to be paid. It might appear that we are constantly chasing the next best thing instead of taking a moment to stop and appreciate the life that we have already created for ourselves. Realizing and having an understanding of when enough is enough, is being able to be happy with what you have now in life, whatever place you are at. Being more satisfied with your life can be achieved with a positive attitude and some personal goals."  (Click here for the full article: http://www.nydailynews.com/lifestyle/horoscopes/2010/06/16/2010-06-16_when_is_enough_enough.html#ixzz0yhqJcFqV)

So I can say with confidence that my best is all I can ask for and is exactly what Stanton needs,
 
Ginger

After only two sessions with the new occupational therapist:

Need I say more?

In the Still of the Night

“Mommmmmmmyyyyyyy” cries out over the monitor at 9:47 pm. I grab a towel and rush into Stanton’s room sensitive to the turmoil he is struggling against inside his belly. My mind immediately runs down the checklist: all doses of medicine today? check; foods today? oh yes – how could I forget the five macaroni noodles I was thrilled he swallowed at 4:30. Mystery solved…


… I spread the towel on the floor, pick him up and sit him on my lap. We wait for the wave of vomit to overtake us. Once the heaving begins, I know this is a just a sample of what the night holds. I steady my mind and center my breathing hoping that the simple rhythm of my body can be of comfort to him. Equally covered in slimy vomit, I slowly take off his pajamas and do my best to wipe him down. He won’t let go of me, making this a most complicated task in the dark. I then take off my covered shirt and put a clean towel between us.

We sit, rock and catch our breath, both fully aware we’ll do this dance again in a few hours.