Yesterday was the day we were to increase to 1.5ml. We came home still at 1. God knew, I trust that. Karen, my mother in law, got to come with us this trip. She wanted to see what it was all about, and I got to enjoy her company on the drive.
Claire has been congested for going on 3 weeks. Blowing beautifully colored boogers and a lovely cough. Feels fine, just congested. So we went yesterday with full intention of talking Dr. Silvers into increasing her dose anyway. She hasn't been reacting at this level, so let's keep this going. Once we got there he listened to her chest and said she was wheezing and her asthma flared up. What asthma? She doesn't have asthma. I reminded him that he tested her for that when we first started all of this and she was negative, or whatever it is to NOT have asthma. But, he said, "Yes, but she was healthy when we did that test. This seems to be triggered from her illness." Ok, so we are looking at random asthma. Sweet, I would hate for a visit to be routine.
Dr. Silvers orders a breathing treatment and says for me to update him Thursday. Once the treatment is over he listens again and said to call him in the morning with an update. The albuterol didn't do as much as he was hoping for. Instead of coming home increased and one step closer to the peanut party, we come home with a rx for albuterol and the same dosage. Oh well, we will continue with this dose until it's time to move on.
Claire told her daddy about what the doctor said. "You know how I have eczema on my hands, well it's in my lungs too." No - you have eczema on your hands and booty, asthma in your lungs (airway). She listens - I was impressed with knowing it was about her breathing. We did another breathing treatment and her evening dose. Of course her tongue was itching - this never happens. We wait it out and all is well.
She was up at about 1ish coughing, coughing again around 3ish, etc. Well, I guess I will be calling the dr with the update, knowing this means she will be on a steroid hoping to fix the cough faster. I fix her breakfast drink (no, the food issues have not resolved - she drinks her breakfast) and give her the morning peanut dose. About 10-15 minutes later Cole comes running in to my bathroom saying Claire is throwing up. AWESOME!!!! He hides in the bathroom (smart, bc I don't want him puking too). I run in and she is over the trashcan throwing up, over and over. It was the most I've seen her do. This means that her morning dose is on the floor and in the trash. We can fix this..............
Adam sweetly cleans up the "mess" and I get her and her Rapunzel hair in the shower. I call the answering service and Dr Silvers calls back immediately. He tells me what to do with the dose (give her 1/2) and start her on Prelone 3x day, continue on breathing treatments and to call immediately with any other symptoms.
So, here we sit, at home instead of work and school doing nothing that could get her coughing....only snuggling. Which is her most favorite thing to do. Praying this resolves quickly, and that the new asthma deal is only linked to an illness and not an ongoing fun change!
Like I told my sisters and mom (and Tim), we are fine. I am a little bummed at the development, but we ARE NOT IN ST JUDE. That is how I measure any circumstance with this baby.
Thank you for your prayers!
Tuesday, March 24, 2015
Saturday, March 7, 2015
25mg
Monday me, Claire, mom and dad went to Dallas to increase. She was 2 weeks on the last dose at this concentrate (2.5mg). This trip was to put Claire at 25mg concentrate. Instead of the 8ml she was dosing at the 2.5, she is to move to 1ml at 25mg. It's confusing, keep up if you'd like. I was extra nervous about this increase because she had reacted off and on through the last 2 weeks. They don't want any reaction. The goal is to increase as her body accepts it. Well, Claire is going to be the exception, not the rule. As she has been from day one.
As we sit in the exam room waiting on the PA, I'm going over and over in my head how I'm going to talk to her about the reactions. She walks in and we start in on the past two weeks. I see her hesitate, and my stomach drops. "I'm hesitant to increase her today, maybe let's keep her here for a couple more weeks." Unacceptable!!! We drove 3 hours to leave with the same dose - absolutely NOT. I will not put my daughter in danger, but neither will just accept someone's opinion against my gut. Now, I'm not necessarily confrontational but I told her I would NOT leave with the same dose. Out of the question. We will find a compromise, period. I talked her into the increase at this new dose for at least 2 weeks, and send us home with her prior dosage if we have to decrease at home. Easy enough. I can totally live with that.
Claire swallows the 25mg like a champ. Mom watches her like a hawk, I can always count on that. So, I could relax during our hour wait, Mom read her a cat book and Dad slept in the chair. I am so stinking grateful for family that will come, much less drive for me. My goodness!!! So, like our previous trips, it was over before we knew it and we were headed home.
Tuesday morning she has an upset stomach. Tuesday evening, stomach better, but not great.. Gave her the med at 6:30, 10 minutes later she's unusually cranky, her throat is burning, itching, chest is tight. LOVELY. This is all my fault, she wasn't ready and I pushed it. I did this! While I was busy praying and beating myself up, she started going the other way. Her body was figuring out what to do with the peanut flour. That is what we want to happen. Claire has such anxiety about life in general a lot of her reaction I believe stems from that as well.
She has had several more reactions, but nothing severe. The drs have said over and over, NO medicine unless we feel we have too. Her body needs time to figure everything out. And by the grace of God, that's what is happening. We are in awe.
I like to assume everyone that reads this has the same questions as I do, so I answer them. For example, how much of a peanut is 25mg exactly. Well, I was smart enough to finally ask this Monday. A single peanut is 600mg. Claire is officially "eating" 1/24 of a peanut. To put this in perspective, she started reacting at 1/240 peanut at the beginning of this journey. This in no way means she is able to eat anything different than peanut free. ONLY. Nothing regarding this has changed. But, God is healing her. Say what you will, but it is the hand of God on her. No question.
I've never been around a child, or adult for that matter, that loves our Lord with her every fiber of her being. She had a paper at school that asked "What do you think is worth more than gold?" Claire's answer was God and Jesus. She proclaims her faith any chance she gets. I have believed from birth that she has a celestial presence. You would have to be around her to understand, but she radiates Christ's love. I don't believe that God would leave any door closed to her. He will heal her, and we will have her peanut party................one day!
As we sit in the exam room waiting on the PA, I'm going over and over in my head how I'm going to talk to her about the reactions. She walks in and we start in on the past two weeks. I see her hesitate, and my stomach drops. "I'm hesitant to increase her today, maybe let's keep her here for a couple more weeks." Unacceptable!!! We drove 3 hours to leave with the same dose - absolutely NOT. I will not put my daughter in danger, but neither will just accept someone's opinion against my gut. Now, I'm not necessarily confrontational but I told her I would NOT leave with the same dose. Out of the question. We will find a compromise, period. I talked her into the increase at this new dose for at least 2 weeks, and send us home with her prior dosage if we have to decrease at home. Easy enough. I can totally live with that.
Claire swallows the 25mg like a champ. Mom watches her like a hawk, I can always count on that. So, I could relax during our hour wait, Mom read her a cat book and Dad slept in the chair. I am so stinking grateful for family that will come, much less drive for me. My goodness!!! So, like our previous trips, it was over before we knew it and we were headed home.
Tuesday morning she has an upset stomach. Tuesday evening, stomach better, but not great.. Gave her the med at 6:30, 10 minutes later she's unusually cranky, her throat is burning, itching, chest is tight. LOVELY. This is all my fault, she wasn't ready and I pushed it. I did this! While I was busy praying and beating myself up, she started going the other way. Her body was figuring out what to do with the peanut flour. That is what we want to happen. Claire has such anxiety about life in general a lot of her reaction I believe stems from that as well.
She has had several more reactions, but nothing severe. The drs have said over and over, NO medicine unless we feel we have too. Her body needs time to figure everything out. And by the grace of God, that's what is happening. We are in awe.
I like to assume everyone that reads this has the same questions as I do, so I answer them. For example, how much of a peanut is 25mg exactly. Well, I was smart enough to finally ask this Monday. A single peanut is 600mg. Claire is officially "eating" 1/24 of a peanut. To put this in perspective, she started reacting at 1/240 peanut at the beginning of this journey. This in no way means she is able to eat anything different than peanut free. ONLY. Nothing regarding this has changed. But, God is healing her. Say what you will, but it is the hand of God on her. No question.
I've never been around a child, or adult for that matter, that loves our Lord with her every fiber of her being. She had a paper at school that asked "What do you think is worth more than gold?" Claire's answer was God and Jesus. She proclaims her faith any chance she gets. I have believed from birth that she has a celestial presence. You would have to be around her to understand, but she radiates Christ's love. I don't believe that God would leave any door closed to her. He will heal her, and we will have her peanut party................one day!
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