for the past year and a half i have had two ways of thinking that i use.
1) Holy crap my kid has special needs!!! What the heck do i do now!!
2) This isn't so bad, i think maybe i can do this.
i have found that i don't use what would obviously come between these paths. there isn't a transition from one to the other but more like a violent shove. i can feel OK one minute but then i realize how fragile that moment of "OK" is when i get shoved to the other side by something that probably shouldn't be a big deal. it doesn't have to be something big though. just something, anything. i think this is because i never feel really, truly safe in any moment of happiness. i am always waiting for the next "thing" to happen and so far it has. i have just reached a point where the pain is so consistent that it doesn't hurt. i can live like that for a long time. thinking the pain has stopped. but then something little happens and all the pain comes back.
i know, i know. it sounds so dramatic. let's take the last five minutes as an example. Emmeline climbed over and wanted me to hold her, which i did. then she wiggled and her extension unplugged. leaking stomach "stuff" all over me. twice. did i mention that i just showered and put on clean clothes? i try and regroup. em is playing with a paper on the desk. she grabs for the keyboard and almost deletes my post. i say no. she bursts into tears like i just slapped her so i try and calm her down and what does she do? yep. pukes everywhere. but of course waits until i have her in a full cuddle. that is just my last five minutes.
i will admit it is easier to deal with crap from Emmeline because after all she is just a baby. a mean spiteful baby but a baby none the less. this morning, however, was filled with yet again with medical "professionals" who thought i was annoying and uneducated for questioning their orders. it makes me sad that more people don't question their doctors, but it was evident with the way they "handled" me that this wasn't something they were used to.
hopefully i will soon have a doctor to back us up instead of question everything i have done that has successfully kept Emmeline alive, happy, and growing for the last year. the pediatrician i have been begging to see has agreed to take Emmeline in his practice. now we only have insurance to stop us. see, planning ahead.
2009/12/08
2009/12/04
The Sleep Study
so in early november emmeline's new ENT ordered a sleep study. well, since it is now early december i called to see why we hadn't heard when our appointment was. they told me that the soonest appointment was in march. when she started to make my appointment she asked if i could hold. i don't know why they ask that. what would happen if you say no? anyway, when she came back she said they had just had a cancelation and could fit em in the next night. last night. josh and i talked for quite some time about who would stay wit her. i have a significant amount of anxiety surrounding hospitals and there fore would love to never have to set foot in one ever again. with emmeline this isn't really possible. josh was willing to cancel his school obligations to stay with her but int eh end i knew i would be just as stressed if i stayed home then i would be there. or so i thought.
for those of you who have never had one done, it stinks. they stick a ton ~25-30 little sensors to you all with their own cord. then they taped them all over her body. legs, chest, neck, face, head, back, you name it. after all those were on they taped a sensor on her upper lip and then put on a nasal cannula. needless to say she was most seriously displeased.
she had a very hard time falling to sleep. obviously. they wouldn't let her sleep in her nap nanny so that was an adventure as well. the nurse kept coming in and telling me to comfort/cuddle her. after a few times i finally broke down and told her that emmeline doesn't like cuddles when she is angry. she doesn't want pitty she wants results. she isn't crying to be held, she is crying because she wants you to take this crap off of her and if you wont do that she doesn't want you to touch her. the nurse was a bit surprised by this but in the morning she told me that whenever em would wake up she noticed she would just look to see if i was there and then i would touch her hand/back/face what have you and she would go back to sleep. seriously? i was right? who knew that the person who has taken care of her for a year would know what they were talking about?!
anyway, after a few hours em had had enough "episodes" to be put on a CPAP. they are terrible and i did not take a picture of her in this because there was no way i was going to make her wear it for even a second longer then she had to. it was awful. it basically blew high pressure air up her nose to keep the airway open. i was sure she would hate me in the morning. i was pleased to see this face in the morning when we took it off of her.
they had to wrap her head in gauze she she wouldn't pull off the sensors. we had already removed the lip and nose stuff at this point.
if you thought the first smile was happy wait until you see how happy she was to have everything off.
note the crazy hair. this was after i had smoothed it down. it took a while to wash out all the glue but she sure was happy.
all in all she has...obstructive apnea. who knew? oh wait, i did!
for those of you who have never had one done, it stinks. they stick a ton ~25-30 little sensors to you all with their own cord. then they taped them all over her body. legs, chest, neck, face, head, back, you name it. after all those were on they taped a sensor on her upper lip and then put on a nasal cannula. needless to say she was most seriously displeased.
she had a very hard time falling to sleep. obviously. they wouldn't let her sleep in her nap nanny so that was an adventure as well. the nurse kept coming in and telling me to comfort/cuddle her. after a few times i finally broke down and told her that emmeline doesn't like cuddles when she is angry. she doesn't want pitty she wants results. she isn't crying to be held, she is crying because she wants you to take this crap off of her and if you wont do that she doesn't want you to touch her. the nurse was a bit surprised by this but in the morning she told me that whenever em would wake up she noticed she would just look to see if i was there and then i would touch her hand/back/face what have you and she would go back to sleep. seriously? i was right? who knew that the person who has taken care of her for a year would know what they were talking about?!
anyway, after a few hours em had had enough "episodes" to be put on a CPAP. they are terrible and i did not take a picture of her in this because there was no way i was going to make her wear it for even a second longer then she had to. it was awful. it basically blew high pressure air up her nose to keep the airway open. i was sure she would hate me in the morning. i was pleased to see this face in the morning when we took it off of her.
they had to wrap her head in gauze she she wouldn't pull off the sensors. we had already removed the lip and nose stuff at this point.
if you thought the first smile was happy wait until you see how happy she was to have everything off.
note the crazy hair. this was after i had smoothed it down. it took a while to wash out all the glue but she sure was happy.
all in all she has...obstructive apnea. who knew? oh wait, i did!
2009/12/02
what i woke up to this morning
the saab's christening.
trees and stuff
when i told josh it snowed he asked if i was just saying that to get him out of bed. like i am coherent enough to plan a joke when i first wake up. would have been a good one though. maybe kind of like setting the clock forward 2 hours on someone's morning to sleep in.
trees and stuff
when i told josh it snowed he asked if i was just saying that to get him out of bed. like i am coherent enough to plan a joke when i first wake up. would have been a good one though. maybe kind of like setting the clock forward 2 hours on someone's morning to sleep in.
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