So, I was playing kitchen with Hannah a few minutes ago.
While taking my order, she informed me that I could get my own drink from the "drink-a-nator," because it makes drinks in one minute instead of one hundred.
She served me on a beautiful red dirt-devil dustpan.
And she courteously sprayed air freshener for me when the "restaurant" got too stinky from the spit-balls "those silly boys" threw onto the ceiling (with lots of eye rolling...)
Best service I've had in a long time.
Friday, December 4, 2009
Saturday, February 7, 2009
Where did the time go?
Is it Feb already? Wow.
Time has been flying by. I hope to keep writing but it's been hard lately. This is really the only journal I have of what goes on around here, so it has been nice to go back and check dates, look at old pics, etc. To see the pics with the comments is great - kinda like scrapbooking, except that takes time I absolutely do not have now.
We are all doing well. We caught this cold/flu thing, but I think it's flushing itself out of our house. Finally. Craig went to Miami for work for three days and I've been working the night shift at home. Ha.
Cohen has been doing the head movement/vomiting thing still, though it seems to be less often now. He has lost weight. Now he is going through some testing. Two weeks ago, it was MRI with sedation (MRI looks fantastic, by the way!)
Today, we go back to the hosp. to take out a pH probe. Cohen was not a happy camper, waking up from anesthesia yesterday with this tube up his nose and down his throat. The nurse passed him to me. Keep his hands away from his nose, she said, because nothing was taped yet - first, they needed to x-ray it and see if it was positioned correctly. NOT A GOOD IDEA!!! I haven't even mentioned that he was heaving after every breath, which made the whole maneuver that much harder. I managed to secure his hands, but within a minute of me holding him in my lap, he managed to rub his nose on my arm and work the tube out.
I was so upset. I told the nurse she should never have passed him off to me like that without someone sticking around to help. A repeat? No way. It just wasn't going to happen. I was done. We were done.
Ah, but once I vented, I was okay. Relatively. And the nurse told me she understood... maybe she was just trying to be nice, I don't know, but the point is, Cohen had to go through the whole thing all over again. Awake.
And mad. Very, very mad.
But, after all is said and done (and with a few wrap thingies on his arms to keep his face out of reach) we actually MADE IT THROUGH THE NIGHT!
So today is going to be a great day! No pH probe in about, let's see... two and a half hours. Yes!
The countdown begins...
Time has been flying by. I hope to keep writing but it's been hard lately. This is really the only journal I have of what goes on around here, so it has been nice to go back and check dates, look at old pics, etc. To see the pics with the comments is great - kinda like scrapbooking, except that takes time I absolutely do not have now.
We are all doing well. We caught this cold/flu thing, but I think it's flushing itself out of our house. Finally. Craig went to Miami for work for three days and I've been working the night shift at home. Ha.
Cohen has been doing the head movement/vomiting thing still, though it seems to be less often now. He has lost weight. Now he is going through some testing. Two weeks ago, it was MRI with sedation (MRI looks fantastic, by the way!)
Today, we go back to the hosp. to take out a pH probe. Cohen was not a happy camper, waking up from anesthesia yesterday with this tube up his nose and down his throat. The nurse passed him to me. Keep his hands away from his nose, she said, because nothing was taped yet - first, they needed to x-ray it and see if it was positioned correctly. NOT A GOOD IDEA!!! I haven't even mentioned that he was heaving after every breath, which made the whole maneuver that much harder. I managed to secure his hands, but within a minute of me holding him in my lap, he managed to rub his nose on my arm and work the tube out.
I was so upset. I told the nurse she should never have passed him off to me like that without someone sticking around to help. A repeat? No way. It just wasn't going to happen. I was done. We were done.
Ah, but once I vented, I was okay. Relatively. And the nurse told me she understood... maybe she was just trying to be nice, I don't know, but the point is, Cohen had to go through the whole thing all over again. Awake.
And mad. Very, very mad.
But, after all is said and done (and with a few wrap thingies on his arms to keep his face out of reach) we actually MADE IT THROUGH THE NIGHT!
So today is going to be a great day! No pH probe in about, let's see... two and a half hours. Yes!
The countdown begins...
Tuesday, January 6, 2009
A New Symptom? Or Complication?
I started to post about our Christmas, just haven't finished yet. As with a lot of things this week, it'll have to wait a few days. I want to include pics but they are so darn slllooowww to load. So a quick update instead.
Cohen has had a rough week and a half. We had two visits to the ER last week. We went to the hematologist yesterday only to get a cool IV and IV bag to lug around with us for the rest of the evening. Not fun. At least Cohen only gets one needle stick now that he has the port-a-cath. I put numbing creme on before we go and he mostly gets mad when he's being held down. A lot less pain, a lot simpler. At least one thing is going better for him.
The problem? Cohen has been going through "spells." I bet there's a better word for them, but that's the only one I can come up with right now. His head rolls around on his neck like a bobblehead doll, then snaps back on his shoulders as his chin jerks up to the ceiling. The movements have gotten worse over the past few days, more pronounced, more constant. Last night, they lasted for about an hour before Cohen threw up all over the place. Again. He has thrown up nearly every day since the day after Christmas. This couldn't possibly be self-stimulating behavior, could it? Do these kids actually make themselves sick doing this?
Something tells me the answer doesn't stop there.
We go back to the hematologist this morning, then to the neurologist immediately after. They ran some tests yesterday to check kidney and liver function. We found out yesterday at the hematologist's office that during one trip to the ER, Cohen had a high number of ketones in his urine, which was probably from dehydration, but, well, I don't know... we have been pumping him full of Pedialyte when he can't hold down his food, but now Cohen will seem fine immediately after he eats (running around, dancing, humming, being a silly boy...) only to get sick a few hours later -- after the head stuff starts. He's lost two pounds already.
The question is this: what is coming first, the nausea or the head movements? And since he can't talk to us, we just don't know. Hopefully, one of the docs today will help us figure this out. But I have a feeling this might lead to yet more tests.
I have to be honest, I was freaking out last night. Just a bit. I love this little guy so much and I just want him to be okay. I'm sure everything will work out. I just wish it didn't take so long.
I will write more later. And post pics too. We really had a great holiday. I hope you did, too!
Cohen has had a rough week and a half. We had two visits to the ER last week. We went to the hematologist yesterday only to get a cool IV and IV bag to lug around with us for the rest of the evening. Not fun. At least Cohen only gets one needle stick now that he has the port-a-cath. I put numbing creme on before we go and he mostly gets mad when he's being held down. A lot less pain, a lot simpler. At least one thing is going better for him.
The problem? Cohen has been going through "spells." I bet there's a better word for them, but that's the only one I can come up with right now. His head rolls around on his neck like a bobblehead doll, then snaps back on his shoulders as his chin jerks up to the ceiling. The movements have gotten worse over the past few days, more pronounced, more constant. Last night, they lasted for about an hour before Cohen threw up all over the place. Again. He has thrown up nearly every day since the day after Christmas. This couldn't possibly be self-stimulating behavior, could it? Do these kids actually make themselves sick doing this?
Something tells me the answer doesn't stop there.
We go back to the hematologist this morning, then to the neurologist immediately after. They ran some tests yesterday to check kidney and liver function. We found out yesterday at the hematologist's office that during one trip to the ER, Cohen had a high number of ketones in his urine, which was probably from dehydration, but, well, I don't know... we have been pumping him full of Pedialyte when he can't hold down his food, but now Cohen will seem fine immediately after he eats (running around, dancing, humming, being a silly boy...) only to get sick a few hours later -- after the head stuff starts. He's lost two pounds already.
The question is this: what is coming first, the nausea or the head movements? And since he can't talk to us, we just don't know. Hopefully, one of the docs today will help us figure this out. But I have a feeling this might lead to yet more tests.
I have to be honest, I was freaking out last night. Just a bit. I love this little guy so much and I just want him to be okay. I'm sure everything will work out. I just wish it didn't take so long.
I will write more later. And post pics too. We really had a great holiday. I hope you did, too!
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