Wednesday, March 26, 2014

Day two: peanut oral immunotherapy

For Elias. Read the story behind the shield.
Alright. Well this should be an interesting appointment. On top of my nerves, Elias is in a terrible mood. He didn't sleep well at all, wasn't interested in anything I offered for breakfast and is overall cranky pants.

More to come when we get started. I probably won't be able to blog as much because Rusty is not with us today. I'll be on solo toddler duty. 

Praying for no reaction and a happy appointment. 

Well we get here and his mood improves. Has a Poptart in the waiting room and tells Sondra all about playing choo choo with daddy. Hopefully this is a good sign from God that this visit will be smooth!

8:55 The nurse just checked him out. We are waiting for our dose! 

9:00 Chat with Dr Nash. Told him I live blogged OIT. He laughed. 

9:10 6 mg dose down the hatch. Elias was thrilled about his newly beloved applesauce. Got mixing lesson from Sylvia. Now we wait. He did get a runny nose as soon as we got here but glad that happened before the dose. I told the nurse he must be allergic to this room. We are now watching Yo Yo Gabba. So far no reaction. 

Love this kid. 

9:49 We have had a nurse check, a field trip to the bathroom and a FaceTime sesh with "Ash" at Elias's request. It's so cute to me that he now calls Asher 'Ash' like we sometimes do. 

Still no reaction! Hooray! What an answered prayer. Almost an hour post dose.

10:55 Looking good! Two hours up in 15 minutes.


Tuesday, March 25, 2014

Day one: peanut oral immunotherapy

Yep, I'm live blogging some OIT. 

For Elias. Read the story behind the shield.

We got here around 9. Lugged in all our stuff. Felt like I was going to labor and delivery. 

Nurse Sylvia came in to check Elias out and get his weight (26lbs). 

We have made ourselves at home in our room. Elias is busy coloring with Dad while we wait for our first dose. 

Elias will open a prize after each dose. Here's his bag he's already gotten into to. (The polka dotted bag, not the food Ziploc.)

My heart is beating fast. We shall see how this goes. 

Dose 1: .1mg down the hatch. Watching now. 

Waiting. Seems well so far. Rusty is falling asleep on the exam table. We are coloring snowmen. 

Dose 2: .2mg 10:25 am

Video entertainment:

So far no reactions! Praise God!

Dose 3: (not sure of amount) 10:55 AM

Took it happily. Loves that Sylvia cooked him some more applesauce.

Now he's coloring. 

Dose 4: .8mg 11:11PM

Elias says "thank you nurse!" as she leaves. 

Next dose will be 1.5 mg. Then 3 mg. then 6 mg. hopefully. 

We have his shirt off to make it easy to keep an eye on him without upsetting him. But that also means every trip or bump or being held leaves red makes on his sensitive skin. So we are all observing closely. 

Dose 5: 11:35 1.5 mg 

Watching Mickey. 


Dose 6: 3 mg 12 noon 

We are now playing with our balloon rocket prize. If this dose goes well, we can go up to 6 mg. wait two hours and eat lunch at some point. 

Dose 7: 6 mg 12:25 pm

He's been an angel. Cooperating. Happy. Charming. 

This will likely be our last dose today. We are being observed for 30 minutes. Then we can have our lunch picnic on the floor in the room. Observed for I think two more hours. Then head home!

Thank you for praying for us. 

15 minutes after last dose, "my nose runnin momma!"  Yep. Snot flow. Went to get nurse who has gone to tell doc. 

Ok. No more snot. No other reactions. Visited with Dr. Nash and we are now settling in for lunch. 

The runny nose could be a transient reaction or completely unrelated. In either case, it cleared up fast and we are well now. 

We have made ourselves right at home. 

Now we watch our boy and wait. He's done SO well. Honestly, totally impressed me. He's been a trooper. 

2:35 Still waiting. They've been in to check on us. Just waiting for the time period to be up. Dr. Nash is so calm and reassuring. 

The Ann and Cille in me needed to straighten the room and reorganize the pallet. Much better. 

And we are on the way home. Given clearance to leave and come back tomorrow. 

Elias did AMAZING. 

Monday, March 24, 2014

The story of the shield

For Elias.
Psalm 3: For you, Lord, are a shield around me.

Last year, when we first received the diagnosis of Elias's life-threatening allergies, I was a wreck. 

One of my close friends called me one day and told me that she thought of me in church that Sunday. The preacher was speaking about Psalm 3. She went on to explain that God would be a shield around Elias. That we would also be a shield around him. And, he'll be okay.

I've recalled that conversation with her many times. And I believe the shield was a message to me from God through her. And I'm so thankful.

I asked a designer friend to create a shield for me for our first day of OIT. I explained the meaning behind it, and told him I wanted it to say 'me' but with an emphasis on the 'E' for my Elias. So, here it is. And I love it and I'm so thankful again.

Tonight, as we prepare for our first day of oral immunotherapy tomorrow, I'm a range of emotions. It's a big leap, that starts with a tiny step. I'm scared. Nervous. Shaken. Thankful. Blessed. Happy. Anxious. Prayerful.

But I'll work through our new normal. We will figure it out. And with the tremendous support of our family and friends (seriously, you guys are the best), we will champion on against that darn peanut.

Stay tuned for updates tomorrow. 

Twas the night before OIT

And Momma is a nervous wreck.

Little One has no idea what a big deal tomorrow is.

Momma feels kind of guilty for putting him through this when he has no say.

At only age two, though, the benefits of getting him desensitized sooner make OIT a top priority.

Momma focuses on the future.

Starting kindergarten with no fear.

Learning to let go a little with less fear of food and more fear of riding his bike too fast or other normal boy things.

Tomorrow morning at 9 AM we report to Dr. Nash's office. With blankets and games and prizes and a cooler and a lunchbox and a backpack and the mighty iPad - we will arrive.

I'll probably be visibly shaking.

We're going to feed my sweet, sweet boy .1 mg of peanut flour. Yes, that is point one mg.

We'll wait 20 minutes. Hopefully he'll be bored as I stare at him looking for any remote sign of a reaction.

If all is well, we'll proceed to .2 mg I think. Wait again.

And we'll repeat, gradually all day.

I pray my boy will take the doses without a fight. Because if he fights me or cries, it will break my heart and just make it worse.

By the time we reach the day's final dose, we hope to be at 3 mg. We'll wait several hours to be sure all is well (no reactions). Then we head home.

Momma probably won't sleep. Momma will thank God for the Angelcare monitor in the crib.

Wednesday morning, we head back to Dr. Nash's office for one dose. This time we'll start right at where we stopped the day before. Wait and (hopefully) tolerate. And then we go home with two weeks worth of 3 mg.

We will dose at home, daily. In two weeks, we go back for an updose.

We'll repeat this until we reach 2400 mgs of peanut flour (the equivalent of 8 peanuts).

I think I have those numbers right. Gosh, I need to take better notes.

If/when we get sick, we stop for a max of 4 days and then down dose. We must have two hours of quiet time after our dose every day. Sickness or raised body temp can cause a reaction. We have to adjust our lives and routines around this very important journey. 

We'll stay at 2400 mgs for a year, as maintenance. Then after a year, we attempt to pass the peanut challenge. I think that's 24 peanuts? I'm not sure. It feels so far off.

What I do know is Dr. Nash uses the protocol from Duke. It's conservative. It's very slow going. And he won't budget from it (from what other moms tell me). I like conservative. Slow and steady wins the race.

Momma needs to go pack the bags and stuff. And maybe take my anxiety meds. Or something.

Please say a prayer tonight for our Elias. Please help us as his parents to trust in our decision to do this. Please pray that his body will adjust according to God's will and that if a reaction occurs we have the wisdom to recognize and help our sweet boy. And please help him to cooperate and one day be extremely thankful for this life altering journey. That starts tomorrow.
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