Kristen (ColeysMom)
10-13-2006, 03:24 PM
Did I tell you guys that Coley didn't qualify for school over the summer? I went through a whole range of emotion over it. I went from HOLY CRAP! Where should I put him to HOLY CRAP! I've never had him to myself. In the end I felt like it would be a good time for us to 'connect.' We just kinda laid back, slept in, took each day kinda day by day and had fun. It was really nice. Course it's easy for me to say that now, cuz he's back in school, but there were quite a few times that I wanted to either walk into traffic or throw him that way...but that goes with having a stubborn 3.5yo I guess. But I think all & all what we really accomplished, was exactly what I was hoping for (which was nice to have happen for a change), that is some nice bonding. I finally feel like we are connected in 'that' way, not like I'm sitting or caring for him. I'm sure some of you know what I mean, but I think that was one of the hardest things I have had to manage through all this 'stuff.' Trying to fight & push and everything else, but not feel that 'bond' that everyone talks about... Well I think I've mentioned it before that after restricting he started giving hugs, started to look into our eyes with something behind it, started to talk with emotion in his voice, all that stuff...I'm sure he needed the bonding just as much as I did, and I don't really think there could have been a better use of our time!
Ok, so we went for our routine follow-up with the metabolic clinic just after school ended for the year. We were sad to learn that our Dr had moved on and would not be seeing patients any longer. We were transfered over to another Dr, let's call him Dr. X. So we go in to see him and it's pretty clear from the get go that he hasn't read much about Coley's history...to which there is a lot! I was a bit, no I was VERY annoyed by that! But he stayed with us asking questions and sending various people from his team in to talk to us. After 4 hours, that's right, 4 hours, we felt like we were right back on track from where our original Dr left off.
Then I get his report in the mail....without going on a HUGE RANT & venting session at this point in my story, I will sum it up with my mom's reaction to his letter: "So in other words, it's all in your imagination?!" Which BTW implies that it is also in all of his others Drs imaginations as well...I'm sure they are non too happy with him as well....
I spent the next 2 days employing all sorts of breathing and calming exercises then called Coley's ped. He was a bit bothered by Dr. X's unprofessionalism as well but we decided we needed to figure out what's next for Coley, and forget about Dr. X. So as we discussed the various options, the one we chose to go with was a challenge for Coley. As frightened as I was, as long as Coley's ped was on stand by for all **** to break lose I felt a bit better about it. He told us to get his BS monitor up & ready to use, get the ketone strips out and be prepared to use them often, to take detailed notes and finally to get the video camera prepped & ready. We set a date and began...
For 3 weeks we tested Coley. The very first thing we saw, which was sad was his withdrawal. Then quirky behaviors, like he'd refuse to come down stairs if the curtains were open. His sleep got restless, his BS started to bounce, ketones were flying, and he was a raging maniac! But this is all behavior (and he's a toddler), and it's easy to dismiss BS & ketones as normal when there is no appetite. His focus was so poor, that even in my descriptions of his behavior it was hard to tell if he had no appetite or if he just couldn't stand still long enough to eat. DH & I were getting tired, but we kept going.
Then it happened. Coley's always had quite a bit of this weird ear wax. He's had tubes put in (because of persistent fluid) that are on their way out, but are taking their time because of the wax...so they irritate him from time to time. Well, he woke up one morning complaining about his ears, and they were pretty hot, but there was no fever. We called the ped and he told us to use these ear drops that we had been using (per the ENT) to break up the wax in hopes of it releasing the tube. Ok, no problem. The day moves on, much like the rest had up to that point in the 'challenge.' He went to bed about 8ish, but woke frantic & crying at about 11ish. I went and got him, and he literally flopped into me and went back to sleep.
I sat on the couch with him for a few minutes until I noticed that I was starting to get wet. I tried to investigate the best I could with one arm pinned under his neck. I kissed his forhead and he was a clammy mess! His clothes & hair were drenched...not just damp, wet. I instructed DH to get the thermometer thinking he's got a raging ear infection and we'll need to get him to the Drs ASAP to get his temp down before he seizes or something...
Well, I'll sum up the who's on first act with after 11 trials, using 3 different thermoteters, 5 different locations and 2 different 'testers' we were on our way to the ER...his was hypothermic. His temp read each time between 95.7 & 96.2. He had a hypoglycemic attack. It was at this point that the ped refered us over to a new metabolic Dr at MGH. Before getting there we decided that we could keep going with the challenge, but to maybe ease up a little. We definately wanted the symptoms present for the new DR, but really didn't want that scare again. Well, unfortunately we ended up with a seizure and some pretty rough nights of sleep before getting in there.
But since then we have been back to restricting, and it's taken quite some time for him to get back to 'normal.' A lot of his behviors are taking quite a bit of time to retreat. Things like his non-responsiveness and his defiance.
Ok, so school started 9/4, and I was SOOOOO ready! Exhausted to say the very least. Course being preggers probably contributes to that...but I think it was more emotionally tired than anything else. More than that I was really looking forward to the 'assistance' of the routine of school to help him get back to normal.
Well, then we had a serious of curve balls, several accidental exposures over the last few weeks. It's been a rollercoaster ride to say the least, and we STILL haven't gotten back to routine. Oh, EVERYTHING is a NO! He's refusing to toilet, refusing to change his pull-up, refusing to dress or change clothes, refusing to brush his teeth, refusing to eat or sit at the table, refusing to sleep or sleep in his bed...MOTHER OF GAWD...the list goes on & on & on....
I was clinging to the fantansy (apparently) that things were going better in school...NOT! I got a note last week that he's not transitioning well, not toileting, arguing about everything, and I had already noticed that his snacks were coming home largely untouched. Which says 2 things, 1) he's not participating, but also that his BS is likely not stable at school.
Alright...so DH & I have a good chat about this & decide that it's all our fault...we are terrible parents...we let it get out of hand from the total breakdown during the challenge, etc. So we decide we are going to get real TOUGH...no 2nd chances...all this, it's back to routine, no options! We're ready! Plus we're thinking about the accidental exposures...maybe they are still contributing a bit...so we are going to get REAL strict with his food too, with an eye on getting him back to balanaced...
Well I had a perspective altering event the other day...a friend of mine came over with her 18mo. Do you guys compare your kids to others...grrrr...as much as I try not too, as much as I know it'll back fire I do it anyway...but there was something different about this time...it didn't make me sad, it sort of made me 'see' Coley's 'differentness' is that a word... Anyway, here's what happened...Nick had a runny nose, and my friend, Kath tells me she's trying to get him to blow his nose. I was like, CH-YAAAA good luck with that! Well we managed to get Nick to blow his nose over & over & over again just by having a big old party everytime he did it. Then we got him to do it on command, then he started asking to do it (no words yet, just some sounds but we understood what he wanted) just because he wanted all the cheering...he was even cheering himself on. I then taught him how to do a peg puzzle much in the same manner...NT, right.
ALRIGHTY! Uhmmmmm, Coley has, like, never, ever responded to praise like that. Bottom line, he could give a rats-a$$ what other people think. He does what he wants and basically when he wants to. Now, he does like being the helper, and the boss...so last school year he was great with participation because he sort of annointed himself activity director and cheered everyone on throughout all the activities. Apparently that's so last year, for him at this point.
We've always known that Coley needs a good challenge to find motivation, and he is just not challenged anymore by doing things like using the toilet, so he has no inclination to do it. WTF!
ok Mili, move over...I just got a warning for being too long...I'll continue on the next post..
Ok, so we went for our routine follow-up with the metabolic clinic just after school ended for the year. We were sad to learn that our Dr had moved on and would not be seeing patients any longer. We were transfered over to another Dr, let's call him Dr. X. So we go in to see him and it's pretty clear from the get go that he hasn't read much about Coley's history...to which there is a lot! I was a bit, no I was VERY annoyed by that! But he stayed with us asking questions and sending various people from his team in to talk to us. After 4 hours, that's right, 4 hours, we felt like we were right back on track from where our original Dr left off.
Then I get his report in the mail....without going on a HUGE RANT & venting session at this point in my story, I will sum it up with my mom's reaction to his letter: "So in other words, it's all in your imagination?!" Which BTW implies that it is also in all of his others Drs imaginations as well...I'm sure they are non too happy with him as well....
I spent the next 2 days employing all sorts of breathing and calming exercises then called Coley's ped. He was a bit bothered by Dr. X's unprofessionalism as well but we decided we needed to figure out what's next for Coley, and forget about Dr. X. So as we discussed the various options, the one we chose to go with was a challenge for Coley. As frightened as I was, as long as Coley's ped was on stand by for all **** to break lose I felt a bit better about it. He told us to get his BS monitor up & ready to use, get the ketone strips out and be prepared to use them often, to take detailed notes and finally to get the video camera prepped & ready. We set a date and began...
For 3 weeks we tested Coley. The very first thing we saw, which was sad was his withdrawal. Then quirky behaviors, like he'd refuse to come down stairs if the curtains were open. His sleep got restless, his BS started to bounce, ketones were flying, and he was a raging maniac! But this is all behavior (and he's a toddler), and it's easy to dismiss BS & ketones as normal when there is no appetite. His focus was so poor, that even in my descriptions of his behavior it was hard to tell if he had no appetite or if he just couldn't stand still long enough to eat. DH & I were getting tired, but we kept going.
Then it happened. Coley's always had quite a bit of this weird ear wax. He's had tubes put in (because of persistent fluid) that are on their way out, but are taking their time because of the wax...so they irritate him from time to time. Well, he woke up one morning complaining about his ears, and they were pretty hot, but there was no fever. We called the ped and he told us to use these ear drops that we had been using (per the ENT) to break up the wax in hopes of it releasing the tube. Ok, no problem. The day moves on, much like the rest had up to that point in the 'challenge.' He went to bed about 8ish, but woke frantic & crying at about 11ish. I went and got him, and he literally flopped into me and went back to sleep.
I sat on the couch with him for a few minutes until I noticed that I was starting to get wet. I tried to investigate the best I could with one arm pinned under his neck. I kissed his forhead and he was a clammy mess! His clothes & hair were drenched...not just damp, wet. I instructed DH to get the thermometer thinking he's got a raging ear infection and we'll need to get him to the Drs ASAP to get his temp down before he seizes or something...
Well, I'll sum up the who's on first act with after 11 trials, using 3 different thermoteters, 5 different locations and 2 different 'testers' we were on our way to the ER...his was hypothermic. His temp read each time between 95.7 & 96.2. He had a hypoglycemic attack. It was at this point that the ped refered us over to a new metabolic Dr at MGH. Before getting there we decided that we could keep going with the challenge, but to maybe ease up a little. We definately wanted the symptoms present for the new DR, but really didn't want that scare again. Well, unfortunately we ended up with a seizure and some pretty rough nights of sleep before getting in there.
But since then we have been back to restricting, and it's taken quite some time for him to get back to 'normal.' A lot of his behviors are taking quite a bit of time to retreat. Things like his non-responsiveness and his defiance.
Ok, so school started 9/4, and I was SOOOOO ready! Exhausted to say the very least. Course being preggers probably contributes to that...but I think it was more emotionally tired than anything else. More than that I was really looking forward to the 'assistance' of the routine of school to help him get back to normal.
Well, then we had a serious of curve balls, several accidental exposures over the last few weeks. It's been a rollercoaster ride to say the least, and we STILL haven't gotten back to routine. Oh, EVERYTHING is a NO! He's refusing to toilet, refusing to change his pull-up, refusing to dress or change clothes, refusing to brush his teeth, refusing to eat or sit at the table, refusing to sleep or sleep in his bed...MOTHER OF GAWD...the list goes on & on & on....
I was clinging to the fantansy (apparently) that things were going better in school...NOT! I got a note last week that he's not transitioning well, not toileting, arguing about everything, and I had already noticed that his snacks were coming home largely untouched. Which says 2 things, 1) he's not participating, but also that his BS is likely not stable at school.
Alright...so DH & I have a good chat about this & decide that it's all our fault...we are terrible parents...we let it get out of hand from the total breakdown during the challenge, etc. So we decide we are going to get real TOUGH...no 2nd chances...all this, it's back to routine, no options! We're ready! Plus we're thinking about the accidental exposures...maybe they are still contributing a bit...so we are going to get REAL strict with his food too, with an eye on getting him back to balanaced...
Well I had a perspective altering event the other day...a friend of mine came over with her 18mo. Do you guys compare your kids to others...grrrr...as much as I try not too, as much as I know it'll back fire I do it anyway...but there was something different about this time...it didn't make me sad, it sort of made me 'see' Coley's 'differentness' is that a word... Anyway, here's what happened...Nick had a runny nose, and my friend, Kath tells me she's trying to get him to blow his nose. I was like, CH-YAAAA good luck with that! Well we managed to get Nick to blow his nose over & over & over again just by having a big old party everytime he did it. Then we got him to do it on command, then he started asking to do it (no words yet, just some sounds but we understood what he wanted) just because he wanted all the cheering...he was even cheering himself on. I then taught him how to do a peg puzzle much in the same manner...NT, right.
ALRIGHTY! Uhmmmmm, Coley has, like, never, ever responded to praise like that. Bottom line, he could give a rats-a$$ what other people think. He does what he wants and basically when he wants to. Now, he does like being the helper, and the boss...so last school year he was great with participation because he sort of annointed himself activity director and cheered everyone on throughout all the activities. Apparently that's so last year, for him at this point.
We've always known that Coley needs a good challenge to find motivation, and he is just not challenged anymore by doing things like using the toilet, so he has no inclination to do it. WTF!
ok Mili, move over...I just got a warning for being too long...I'll continue on the next post..