Yep, "Go the distance" is another song that reminds us of this journey:
"I'll be there someday, I can go the distance
I will find my way if I can be strong
I know every mile would be worth my while
When I go the distance, I'll be right where I belong"
I know every mile would be worth my while
When I go the distance, I'll be right where I belong"
Coby was all dressed up in this week's motivational shirt and even a new hat and he was ready to dose! His nurses and doctors always check out his shirt of the week. They love that it is always themed to match our journey.
And so up-dose he did! (I was actually feeling quite antsy about today's appointment though I don't know why I had 'extra' nerves today. After all the next two up-doses are A LOT scarier than today's. But nonetheless, I was all headachy and nauseaus and needed to take two ibuprofen, two tylenol and then an excedrine migraine to be able to get us over there. At least it worked out in the end.)
After his intial check and they cleared him to up-dose I struggled to get that stupid capsule open yet again.
It splintered apart.
Argh!
Again?!
So I threw that one out and got the next capsule open.
And now I'm panicking that if Coby cannot up-dose next week OR if he does updose to 500 next week but then needs to downdose, we won't have enough 250s to get him through. Argh. I thought this part of the stress was over. Guess not....
Sigh.
(I'm also a bit worried that our apothecary screwed up even more than I initially thought. The shell seemed tiny to be holding so much flour and it did crack into pieces again. When I got home I compared the white 250 capsules we have to the single green 250 capsule he made us and there is quite a difference in size. I then compared the white 250s it to our left-over white 100s and the capsules are EXACTLY the same size. Are you bleepin' kidding me???? When I took the picture to send to Yitz, I ended up mixing up the supposed 250 with the supposed 100 and now have no idea which is which. So the bleepin' guy color coded ONE of the 250s to green, same as one of the 500s, YET all the remaining white 250s are the SAME EXACT SIZE as the 100s???? So now I'm in a panic worrying what if today I ended up down-dosing Coby back to 100 and we are going to accidentally be dosing him with the 100s over the next week instead of 250 and when we go in next week to jump up to 500 I will end up causing a reaction. I mean 250 to 500 is already a huge jump but if I accidentally end up jumping him from 100 to 500--- OMG! I THINK there was a lot more powder packed into today's capsule compared to the one two weeks ago but I won't know for sure until tomorrow when I open both of them to compare the content quantity---- I cannot open them tonight to check because the powder is not supposed to sit out so if I tested it today I'd have to toss away yet another pill... I 'm not sure how much you can tell in the picture--- but there is a sizeable difference between the two capsules that supposedly both hold 250, yet the capsules are EXACTLY the same size that hold the 100 and 250. BLEEPIN' MORON!!!!!)
Anyway at the office Coby did great!!!!
After the hour was up and the doctor checked him out she said to him, "This peanut thing is easy, right?" Haha! Boring and easy is what we want!
We asked her a few questions like:
And so we left. In the car ride home it was a bit nerve-wracking for two reasons. First, Waze was not offering me my usual route and I am a creature of habit--- so I did it without Waze and didn't get lost!!!! Yay me!
But more importantly, it was nerve-wracking because Coby was coughing a bit and had to keep clearing his throat. He insisted he had swallowed wrong. Every couple of minutes I interrogated him: "Do you feel itchy", "Can you take a deep breath", "Does something feel stuck in your throat?"
"NO. YES. NO!"
I was still quite a bit scared (what else is new) because that 'wrong swallow' lasted for most of the drive home. He also said he felt really tired. I know part of that is 'normal' as his body fights this bigger dose. (Assuming James didn't %#*@ it up even more than I already know about), but it's still nerve-wracking each time.
But we got home just fine and it was then that I pointed out to Coby the 'BOX' that arrived. I had taken this picture earlier in the day, before Coby got home from school, when I could not bring myself to open it.
So when we got home from the up-dose appointment I said to Coby,
"Guess what--- the peanuts arrived! Do you want to open the box?"
"Um, no. Not today."
I don't blame him... I really don't want to open them either. Like ever.... But I will not tell him that.
One step at a time.
That's all that can be expected of us.
As long as we keep moving forward.
Was about to post this when I realized Coby was breaking out on his torso. Nothing too bad- but something. Could be 'normal' as he gets used to higher dose, but again- nerve-wracking. We will keep an extra eye on him.
 |
| Never back down! |
And so up-dose he did! (I was actually feeling quite antsy about today's appointment though I don't know why I had 'extra' nerves today. After all the next two up-doses are A LOT scarier than today's. But nonetheless, I was all headachy and nauseaus and needed to take two ibuprofen, two tylenol and then an excedrine migraine to be able to get us over there. At least it worked out in the end.)
After his intial check and they cleared him to up-dose I struggled to get that stupid capsule open yet again.
It splintered apart.
Argh!
Again?!
So I threw that one out and got the next capsule open.
And now I'm panicking that if Coby cannot up-dose next week OR if he does updose to 500 next week but then needs to downdose, we won't have enough 250s to get him through. Argh. I thought this part of the stress was over. Guess not....
Sigh.
(I'm also a bit worried that our apothecary screwed up even more than I initially thought. The shell seemed tiny to be holding so much flour and it did crack into pieces again. When I got home I compared the white 250 capsules we have to the single green 250 capsule he made us and there is quite a difference in size. I then compared the white 250s it to our left-over white 100s and the capsules are EXACTLY the same size. Are you bleepin' kidding me???? When I took the picture to send to Yitz, I ended up mixing up the supposed 250 with the supposed 100 and now have no idea which is which. So the bleepin' guy color coded ONE of the 250s to green, same as one of the 500s, YET all the remaining white 250s are the SAME EXACT SIZE as the 100s???? So now I'm in a panic worrying what if today I ended up down-dosing Coby back to 100 and we are going to accidentally be dosing him with the 100s over the next week instead of 250 and when we go in next week to jump up to 500 I will end up causing a reaction. I mean 250 to 500 is already a huge jump but if I accidentally end up jumping him from 100 to 500--- OMG! I THINK there was a lot more powder packed into today's capsule compared to the one two weeks ago but I won't know for sure until tomorrow when I open both of them to compare the content quantity---- I cannot open them tonight to check because the powder is not supposed to sit out so if I tested it today I'd have to toss away yet another pill... I 'm not sure how much you can tell in the picture--- but there is a sizeable difference between the two capsules that supposedly both hold 250, yet the capsules are EXACTLY the same size that hold the 100 and 250. BLEEPIN' MORON!!!!!)
 |
| green capsule is much fatter and bigger than white yet they both supposedly hold 250 |
 |
| same exact size- one with 100, one with 250 |
Anyway at the office Coby did great!!!!
 |
| dosing! |
 |
| All this PLUS more came out of the '250', so I really hope we dosed correctly |
After the hour was up and the doctor checked him out she said to him, "This peanut thing is easy, right?" Haha! Boring and easy is what we want!
We asked her a few questions like:
Q. If he graduates, can he STOP wearing his allergy bracelet?
A. Nope! He should always wear it as a precaution. (He was not happy about that.)
Q. Why is he still having sensitive skin and eczema break outs--- shouldn't that stop as he is desensitized?
A. Good question- no research was done on that specific question- but it would make sense that it should!
Q. Will he react when I open the bag of shelled peanuts to all the dust being released into the air?
A. He should be okay- though don't have his head directly over the bag when you open it.
Q. When does he 'graduate'--- after his final updose of 12 peanuts or after his final food challenge of 24 peanuts which is a month later?
A. There are two little ceremonies- but the bigger one is actually after 12! If he passes the final updose of 12- he is considered 'graduated'
Meanwhile he passed today's up-dose!
And so we left. In the car ride home it was a bit nerve-wracking for two reasons. First, Waze was not offering me my usual route and I am a creature of habit--- so I did it without Waze and didn't get lost!!!! Yay me!
But more importantly, it was nerve-wracking because Coby was coughing a bit and had to keep clearing his throat. He insisted he had swallowed wrong. Every couple of minutes I interrogated him: "Do you feel itchy", "Can you take a deep breath", "Does something feel stuck in your throat?"
"NO. YES. NO!"
I was still quite a bit scared (what else is new) because that 'wrong swallow' lasted for most of the drive home. He also said he felt really tired. I know part of that is 'normal' as his body fights this bigger dose. (Assuming James didn't %#*@ it up even more than I already know about), but it's still nerve-wracking each time.
But we got home just fine and it was then that I pointed out to Coby the 'BOX' that arrived. I had taken this picture earlier in the day, before Coby got home from school, when I could not bring myself to open it.
"Guess what--- the peanuts arrived! Do you want to open the box?"
"Um, no. Not today."
I don't blame him... I really don't want to open them either. Like ever.... But I will not tell him that.
One step at a time.
That's all that can be expected of us.
As long as we keep moving forward.
"TO FREEDOM!!!!"
Was about to post this when I realized Coby was breaking out on his torso. Nothing too bad- but something. Could be 'normal' as he gets used to higher dose, but again- nerve-wracking. We will keep an extra eye on him.
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