The good news is that Jordan is starting to stablize. Her body was just really out of whack for awhile, from the meds we think, and now we've mostly corrected the imbalance and finished all of the meds. We still had to watch her sodium and potassium, which is still dropping, but not at a fast rate nor to dangerous levels. It's possible that shell just have to have a little bit of electrolytes added to her breastmilk from now on to keep her from dropping too low. She's back to fussing more than yesterday, but still not nearly what it was like on the ACTH. The VCUG test showed a possible structural glitch that could lead to increases in UTIs, so the ped urologist is going to review the test tomorrow and decide what to do. The options are ignore it and redo the test in 6 months, consider using a prophylactic low-dose antibiotic to prevent UTIs, and, if it is really there, surgery to correct it. On the scale of things, it's really not that important, especially right now, and will not likely have any big long term effects on her health.
Devon is on duty tonight. Jordan still isn't sleeping through the night, so it's pretty rough. For the last 3 nights we've traded. Tonight Avery & I are home for a girls only slumber party. She was really needing some special mommy time. She came to the hospital yesterday and today to visit Jordan, but mostly to play on the great toys they have there. She's been Nana Noma's right-hand-girl for the past few days, and had fun at her red hat tea party at Melba's daycare today.
Avery is starting to lose it, and I only slept from 6:00 to 11:00, so it is bed time! Fingers crossed for coming home tomorrow, and that Jordan is able to regulate her own systems from now on!
31 August 2006
What A Way To Spend The Day!
Happy 8 month birthday today, Jordan. There were a couple of months in there that I really didn't believe we'd get this far. But despite everything, you're hanging in there, and really giving the medical community a run for their money. You've got them ALL stumped. They all have their theories, but until they can tell us what to do to help you, or even what to expect, I try to take it all with a grain of salt. They're interesting, for sure, but not helpful. You are who you are, and that's okay with us (but really, couldn't you let us sleep just a little bit more?!?!).
Now for some of the technical stuff for the day -- so I can clear my head and try to sleep (Devon is taking the 00:00 to 04:00 sleep shift tonight. [This blog has become my nightly mental download, if you haven't guessed that already, and now I find it hard to sleep without setting my thoughts free through the keyboard.]
I can't really complain too much about the care this time. A couple minor hitches (almost all having to do with blood -- failed collection attempts and IV starts, PICC line complications), and the resident that was on tonight that was a complete ass to me because I complained when Jordan hadn't gotten her potassium drip 4 hours after her potassium levels were starting to drop. She started to get irritable, fussy, uncomfortable, and to throw tantrums. Mind you, nothing that Jordan presents as "normal," but I definitely know when her mood is changing, and Dr. Larvalform (alias) wanted to know what I thought we should do to improve the situation. GIVE HER POTASSIUM I suggested, to which he countered that that normally K depletion doesn't make kids irritable (it does, however, put people at risk for heart failure, which worries me more than the fussiness). His suggestions: feed her (she has NEVER responded to food, part of the reason for the G-tube, and I had been extra feeding her all night to make up for the half-day of food she missed today), and dim the lights, (she can't see anyway, what good is that going to do?!?!?). Again, as I've said before, nothing is "normal" with Jordan, and after another hour of screwing around, they gave her the K, and she settled down within minutes. Seriously folks, I GET that we don't necessarily know the answers for Jordan, but PLEASE!!! just admit it and do what you can to make things better. Don't make me out to be a hysterical parent because I think my kid's getting fussy--when she is!!!! And, not only did she settle down behaviorally once she got the K, her pulse slowed down, and her blood pressure eased up, too. Uggggghhhhhhh. I liked yesterday's docs a whole lot better. There was way more chaos and confusion yesterday, and wayyyyy better care.
Devon lost it today and chewed out a nurse (who inherited the problem) about taking 13 hours to fix her PICC line. After 12 hours, when they were FINALLY ready to give her the K, the line wouldn't work, and the IV unit had been ignoring her since 09:00. Get this -- I went and asked if they could just give her the K in a regular IV (so we wouldn't have to wait to get the PICC line fixed), and in the end we ended up giving it to her in her g-tube!!!!!!!! She could have had it 4 hours earlier with no PICC issues at all!!!! BTH: K is too caustic to put directly into a vein, it would eat it up, hence the PICC line.
Oh my goodness, am I ranting or what. I really shouldn't complain, things have been pretty good here, and for the most part Jordan is improving. As you can tell from above, her potassium levels dropped this afternoon, after making a very strong comeback this morning (after the K drip). Na dropped a little, too, but not enough to correct. Blood pressure is holding steady without meds (still a little too high, but slowing improving), and she's almost back to "normal" in terms of temperment (the screaming is about 80% gone at this point). She's still a cartoon-looking sumo wrestler, I understand that cushionoid look (edema) will take awhile to clear. We don't know why her K dropped, but the nurse and I have a theory that it has to do with her diarrhea (what a MESS that continues to be).
Well, it was a busy, but relatively good day to turn 8 months old I suppose. At least we made it here in one piece, despite all the bumps in the road. Happy 2/3 year birthday, Jordan.
Now for some of the technical stuff for the day -- so I can clear my head and try to sleep (Devon is taking the 00:00 to 04:00 sleep shift tonight. [This blog has become my nightly mental download, if you haven't guessed that already, and now I find it hard to sleep without setting my thoughts free through the keyboard.]
I can't really complain too much about the care this time. A couple minor hitches (almost all having to do with blood -- failed collection attempts and IV starts, PICC line complications), and the resident that was on tonight that was a complete ass to me because I complained when Jordan hadn't gotten her potassium drip 4 hours after her potassium levels were starting to drop. She started to get irritable, fussy, uncomfortable, and to throw tantrums. Mind you, nothing that Jordan presents as "normal," but I definitely know when her mood is changing, and Dr. Larvalform (alias) wanted to know what I thought we should do to improve the situation. GIVE HER POTASSIUM I suggested, to which he countered that that normally K depletion doesn't make kids irritable (it does, however, put people at risk for heart failure, which worries me more than the fussiness). His suggestions: feed her (she has NEVER responded to food, part of the reason for the G-tube, and I had been extra feeding her all night to make up for the half-day of food she missed today), and dim the lights, (she can't see anyway, what good is that going to do?!?!?). Again, as I've said before, nothing is "normal" with Jordan, and after another hour of screwing around, they gave her the K, and she settled down within minutes. Seriously folks, I GET that we don't necessarily know the answers for Jordan, but PLEASE!!! just admit it and do what you can to make things better. Don't make me out to be a hysterical parent because I think my kid's getting fussy--when she is!!!! And, not only did she settle down behaviorally once she got the K, her pulse slowed down, and her blood pressure eased up, too. Uggggghhhhhhh. I liked yesterday's docs a whole lot better. There was way more chaos and confusion yesterday, and wayyyyy better care.
Devon lost it today and chewed out a nurse (who inherited the problem) about taking 13 hours to fix her PICC line. After 12 hours, when they were FINALLY ready to give her the K, the line wouldn't work, and the IV unit had been ignoring her since 09:00. Get this -- I went and asked if they could just give her the K in a regular IV (so we wouldn't have to wait to get the PICC line fixed), and in the end we ended up giving it to her in her g-tube!!!!!!!! She could have had it 4 hours earlier with no PICC issues at all!!!! BTH: K is too caustic to put directly into a vein, it would eat it up, hence the PICC line.
Oh my goodness, am I ranting or what. I really shouldn't complain, things have been pretty good here, and for the most part Jordan is improving. As you can tell from above, her potassium levels dropped this afternoon, after making a very strong comeback this morning (after the K drip). Na dropped a little, too, but not enough to correct. Blood pressure is holding steady without meds (still a little too high, but slowing improving), and she's almost back to "normal" in terms of temperment (the screaming is about 80% gone at this point). She's still a cartoon-looking sumo wrestler, I understand that cushionoid look (edema) will take awhile to clear. We don't know why her K dropped, but the nurse and I have a theory that it has to do with her diarrhea (what a MESS that continues to be).
Well, it was a busy, but relatively good day to turn 8 months old I suppose. At least we made it here in one piece, despite all the bumps in the road. Happy 2/3 year birthday, Jordan.
30 August 2006
Things Are Looking Up
Just a quick note, there's a line-up at the hospital computer.
Jordan is starting to snap out of it. Things were so wacky it seemed (to Devon and I) that they were tooooooo random to be anything specific, and now that's proving to be the case, so far. She has recovered from the dangerously low sodium levels, which in turn sent her potassium levels into a spiral (down into the heart failure zone). But now that's back up to good levels again, too, so we finally fed her some breastmilk and are letting her float for a few hours to see how she does on her own. The Na/K thing proved to the nephrologist that her kidneys are functioning perfectly, so we're sort of out of the woods on that front. And, for no good reason, her white blood cell count dropped back to 18,000 (only slightly above the "safe" upper limit of 15,000, way down from yesterdays 30,000). So, things are getting better. Also, she seems to be clearing the ACTH, the screaming is almost gone, the blood pressure is low enough that she's off those meds (but it's still too high to be ignored), and she's in no need of antibiotics right now.
We'll be here tonight again, but maybe now that the craziness is settling down we'll be headed home tomorrow or the next day, with no major damage or staggering diagnoses. She just seemed to have an oddball reaction to all of the drugs.
Still waiting to talk to the geneticist (BLECK) at ~4:00 to find out why he thinks his lab results were funny. We'll keep you all posted, and get some pics up later, too (maybe not until we're home, though).
Apologies for any typos, no time to edit.
Jordan is starting to snap out of it. Things were so wacky it seemed (to Devon and I) that they were tooooooo random to be anything specific, and now that's proving to be the case, so far. She has recovered from the dangerously low sodium levels, which in turn sent her potassium levels into a spiral (down into the heart failure zone). But now that's back up to good levels again, too, so we finally fed her some breastmilk and are letting her float for a few hours to see how she does on her own. The Na/K thing proved to the nephrologist that her kidneys are functioning perfectly, so we're sort of out of the woods on that front. And, for no good reason, her white blood cell count dropped back to 18,000 (only slightly above the "safe" upper limit of 15,000, way down from yesterdays 30,000). So, things are getting better. Also, she seems to be clearing the ACTH, the screaming is almost gone, the blood pressure is low enough that she's off those meds (but it's still too high to be ignored), and she's in no need of antibiotics right now.
We'll be here tonight again, but maybe now that the craziness is settling down we'll be headed home tomorrow or the next day, with no major damage or staggering diagnoses. She just seemed to have an oddball reaction to all of the drugs.
Still waiting to talk to the geneticist (BLECK) at ~4:00 to find out why he thinks his lab results were funny. We'll keep you all posted, and get some pics up later, too (maybe not until we're home, though).
Apologies for any typos, no time to edit.
Morning Update
I'm feeling rested, but still pretty pooped. Also feeling oddly "free."
But now her potassium is way low, so they're starting her on a K drip for 4 hours. After that she'll be allowed to eat again (she hasn't had any food since ~ 8:00 pm and is HUNGRY & MAD). After the K drip they'll do another set of labs and then try to let her coast for awhile to see what she does on her own, once she's been replenished.
So, still some wacky, inexplicable things going on, but things are starting to straighten out a bit. We'll definitiely be in the hospital again tonight, but that's okay, we're treated well there. Nana Noma & Avery are coming for a visit this morning -- Avery's first visit to the hospital since Jordan was born, so I hope she can handle it. Nana Noma thinks she's ready to come see us, so that's what we'll do. She's a pretty nurturing, caring, protective kid when it comes to Jordan, and she knows she's sick (all too well), so I'm sure she'll do just fine. Plus, they have some of the greatest play rooms in town there since it's a kids hospital.
Well, gotta get back down there and see how Devon survived the night on his own.
The Hotel Emanuel
That would be the "hotel" Legacy Emanuel Children's Hospital in Portland. As you may have noticed, things have been pretty crazy with Jordan over the last few weeks. Things finally came to a head today, so with great relief, we checked in for a few days. She's really got the docs stumped! Lots of them. Pediatricians, nephrologists, geneticists, neurologists, endocrinologists, residents, interns, you name it, they can't figure her out. Her lab results are completely wacko and inconsistent with ANYTHING known to man. And, we don't know if it's because of her undiagnosed condition, or because of all the meds she's been on, or perhaps a bit of both. The "good" unofficial news is that the ultrasound of her kidneys, bladder, and liver were totally normal: the right size & shape, no tumors, no absesses, no malformations. Those were all on the table. More tests tomorrow to check her kidney function, and of course, more blood, pee, and poop.
For tonight she's on a sodium drip to try to get her sodium levels up. Right now she's in danger of having seizures because her levels are so low -- and of course we don't know why (although some theories exist). I am FREAKED out at the idea of more seizures!! And of course, more salt means more hypertension, so they're going to check things in the morning and see if they can find a different drug to control the blood pressure issues.
The good news is that the bladder infection is gone (despite crazy-high white blood cell counts in her urine), she's not febrile, the ACTH is DONE, the Augmenten is done, and the results of the ultrasound were (unofficially) good. The really good news is that she's hardly screaming at all!! It's like night and day -- she's practically a new kid. I like to think it's because of the steroid wean, but it's possible that it's because she's too sick to cry.
And the "good" news for me is that Devon stayed at the hospital and sent me home tonight to SLEEP. Of course, it's only good if I CAN sleep, instead of cleaning the house, going through mail, doing laundry, getting the dishwasher loaded and started, or even just clearing my mind of worry. The good news for Devon is that before he decided I had to go home tonight (my first night away, ever), the nurse came in and said that she had instructions for extra duty through the night -- so that I could sleep through. She'll be doing the feedings and diaper changes tonight instead of Devon, so he will have a better chance of sleeping through. Go figure he's weasel in on that luxury, it was for me that the service was ordered (by Jordan's pediatrician). It's a nurse we've had there before, but that was in April or May, so I can't remember if we liked her or not.
And as far as hospital stays goes, this one isn't turning out to be too bad. Because of the infection we're in "protective custody" -- so we get the whole room to ourselves. Lots of space! And a bed, 2 cots, and a built in sleeping nook. We could practically have a slumber party in there. And, to top it off, since we finally maxed out our insurance the last time we were in, it's all TOTALLY FREE now, not even a copay. I think we should get as many hospital stays as possible, really.
Okay, now I must go to bed to take advantage of such a great opportunity. Vitamin A(mbien) -- come to mama!
More later. I wish I had the camera when there were 3 docs listening to Jordan's lungs at the same time -- it took up practically her whole tummy with all of those stethoscopes.
For tonight she's on a sodium drip to try to get her sodium levels up. Right now she's in danger of having seizures because her levels are so low -- and of course we don't know why (although some theories exist). I am FREAKED out at the idea of more seizures!! And of course, more salt means more hypertension, so they're going to check things in the morning and see if they can find a different drug to control the blood pressure issues.
The good news is that the bladder infection is gone (despite crazy-high white blood cell counts in her urine), she's not febrile, the ACTH is DONE, the Augmenten is done, and the results of the ultrasound were (unofficially) good. The really good news is that she's hardly screaming at all!! It's like night and day -- she's practically a new kid. I like to think it's because of the steroid wean, but it's possible that it's because she's too sick to cry.
And the "good" news for me is that Devon stayed at the hospital and sent me home tonight to SLEEP. Of course, it's only good if I CAN sleep, instead of cleaning the house, going through mail, doing laundry, getting the dishwasher loaded and started, or even just clearing my mind of worry. The good news for Devon is that before he decided I had to go home tonight (my first night away, ever), the nurse came in and said that she had instructions for extra duty through the night -- so that I could sleep through. She'll be doing the feedings and diaper changes tonight instead of Devon, so he will have a better chance of sleeping through. Go figure he's weasel in on that luxury, it was for me that the service was ordered (by Jordan's pediatrician). It's a nurse we've had there before, but that was in April or May, so I can't remember if we liked her or not.
And as far as hospital stays goes, this one isn't turning out to be too bad. Because of the infection we're in "protective custody" -- so we get the whole room to ourselves. Lots of space! And a bed, 2 cots, and a built in sleeping nook. We could practically have a slumber party in there. And, to top it off, since we finally maxed out our insurance the last time we were in, it's all TOTALLY FREE now, not even a copay. I think we should get as many hospital stays as possible, really.
Okay, now I must go to bed to take advantage of such a great opportunity. Vitamin A(mbien) -- come to mama!
More later. I wish I had the camera when there were 3 docs listening to Jordan's lungs at the same time -- it took up practically her whole tummy with all of those stethoscopes.
29 August 2006
Double Date
(all photos here by Kelly Wood)
Kate's was the place to be tonight.
Logan & Lachlan came to visit, so Avery & I headed over to finally meet the gorgeous Lachlan (4-months-old) & to play with big brother Logan (2.5-years-old). Kate & Avery ate like teenage boys, devouring pepperoni pizza & tacos. Logan couldn't slow down long enough to get but a couple bites in all night. It's certainly interesting to see three 2-year-olds "play" together. Usually one was in the pool, one in the sandbox, and one in the grass, athough occasionally 2 of them 
would end up at the same "station." Finally they all came together to play in the sand box, it was very sweet. But not nearly as adorable as the bath at the end of the night. Check out Logan the ladies man!
Kate's was the place to be tonight.
Logan & Lachlan came to visit, so Avery & I headed over to finally meet the gorgeous Lachlan (4-months-old) & to play with big brother Logan (2.5-years-old). Kate & Avery ate like teenage boys, devouring pepperoni pizza & tacos. Logan couldn't slow down long enough to get but a couple bites in all night. It's certainly interesting to see three 2-year-olds "play" together. Usually one was in the pool, one in the sandbox, and one in the grass, athough occasionally 2 of them 
would end up at the same "station." Finally they all came together to play in the sand box, it was very sweet. But not nearly as adorable as the bath at the end of the night. Check out Logan the ladies man!
And where was Lachlan during all of this? Smiling and laughing and being an angel, passed from lap to lap and absorbing all the 2-year-old energy around him. What a perfect little boy. He brought tears to my eyes; what a miracle a baby can be. It was a little difficult to accept at first, but easy to adore him within only a couple of minutes. A far cry from my daily reality, but a good reminder of the world, and life, outside our house. 
If You Can't Say Something Nice. . .
Well, here it goes, another one-handed entry, another Conan. Jordan slept from 10:00 pm to 11:30 pm, just when daddy took two Nyquil & headed off to bed (he's having an allergies-from-hell day today). So, with a full tummy, jammies, and a dry diaper I'm hoping she'll doze off again sooner rather than later, and I'm willing to sacrifice a thumb to that cause. Oh, god I need to sleep. I'm delirious with exhaustion. I don't know how I've gone this far, and how much more I can do. And tonight it feels like its all for nothing. I know it isn't, but sometimes it just feels that way. I feel like I'm working my tail off, and have nothing to show for it.
Perhaps I should be more grateful about Jordan's triumph over the devastating Infantile Spasm seizures (so far, knock on wood), and excited about what is to come now that her brain isn't mis-firing quite as much. At first she seemed to improve; better head control, more flexion. Baby steps, but we'll take them. But then things started spiralling: She regressed to newborn behaviors, quit sleeping through the night (and most of the day), and started screaming like maniac. Now, 47 days later, and seizure free (knock on wood), the screaming is finally starting to subside and the sleeping periods are becoming slightly longer. But at the same time, many things have gone wrong: urinary tract infections, cold sweats, sky-rocketing blood pressure, electolyte imbalance, increased white blood cell counts, and mysterious crystals in her urine. Her medicine schedule in itself is crazy: ACTH shots, Lasix, Augmenten, Zantac, vitamins, Tylenol & ibuprofen, once, twice, three times per day. Food in, food out. We chart like a hospital, just to keep track of what's been done and what we need to do next, too tired to remember all the details in our heads. I have a notebook for all the conversations with various doctors: run this test, see me next week, see the other doc tomorrow, call the insurance company, the early intervention program, the specialists in Bethesda, LA, Detroit, Seattle, Chicago. Ideas and theories, hypotheses and facts. Too much to remember, too important to forget.
I'm not all that excited to be on a first name basis with the valets at the hospital ("will you be doing labs today, too, or just blood pressure"), but I'm glad that they're so friendly. The nurses on the peds floor and the technicians in the lab are becoming friends. We're starting to know each others stories, kids, adventures. Again, not a bad thing, but not exactly the traditional way to make friends.
But the thing that's really been getting to me lately are the calls from the doctors. I just don't want to hear it from them any more. They call day & night, weekday & weekend, just to tell us (i.e. remind us) that something is abnormal. Duh. Seriously. Of course things are abnormal. Nothing about Jordan is normal. We know that already. And really what I hear is this: No matter how hard you work to feed her, or medicate her, or train her, no matter how many physical therapies she goes to, or drugs she takes, or doctors she sees, she's abnormal, and you aren't making her better. I'm really getting to the point of giving up. I feel like I'm killing myself for nothing. My god after 8 months of nonstop therapy, doctors, medicines, and tests, she still can't hold her head up. She still can't sit. She still doesn't smile, or put her hands in her mouth, or, hell, eat through her mouth.
When is it ever going to get better? Is this what she's going to be like at 30 pounds, 40 pounds, 10 years old, 20 years old. No one can tell us that; all they tell us is that yet one more thing is wrong. It's quite a list, and growing. Perhaps we'll stop the seizures, lower the blood pressure, stabilize the electrolytes, even get her to hold her head up, but then what? Then where do we go? Then what do we do? Will she see? Will she walk? Will she be able to go to school? Will she even know who we are?
So here's the deal doctors -- I just want you to quit calling until you can say something nice for once. Didn't your mothers teach you that?
And on a totally separate note: A huge THANK YOU to JAYNIE for the yummy, nummy dinner! It was delicious, and we even had enough for a leftover meal to come. Thank you soooooo much! We really needed that, especially today with chef Devon out with allergies. I had already resigned myslf to a bowl of Cocoa Krispies for dinner when you showed up and saved the day.
Perhaps I should be more grateful about Jordan's triumph over the devastating Infantile Spasm seizures (so far, knock on wood), and excited about what is to come now that her brain isn't mis-firing quite as much. At first she seemed to improve; better head control, more flexion. Baby steps, but we'll take them. But then things started spiralling: She regressed to newborn behaviors, quit sleeping through the night (and most of the day), and started screaming like maniac. Now, 47 days later, and seizure free (knock on wood), the screaming is finally starting to subside and the sleeping periods are becoming slightly longer. But at the same time, many things have gone wrong: urinary tract infections, cold sweats, sky-rocketing blood pressure, electolyte imbalance, increased white blood cell counts, and mysterious crystals in her urine. Her medicine schedule in itself is crazy: ACTH shots, Lasix, Augmenten, Zantac, vitamins, Tylenol & ibuprofen, once, twice, three times per day. Food in, food out. We chart like a hospital, just to keep track of what's been done and what we need to do next, too tired to remember all the details in our heads. I have a notebook for all the conversations with various doctors: run this test, see me next week, see the other doc tomorrow, call the insurance company, the early intervention program, the specialists in Bethesda, LA, Detroit, Seattle, Chicago. Ideas and theories, hypotheses and facts. Too much to remember, too important to forget.
I'm not all that excited to be on a first name basis with the valets at the hospital ("will you be doing labs today, too, or just blood pressure"), but I'm glad that they're so friendly. The nurses on the peds floor and the technicians in the lab are becoming friends. We're starting to know each others stories, kids, adventures. Again, not a bad thing, but not exactly the traditional way to make friends.
But the thing that's really been getting to me lately are the calls from the doctors. I just don't want to hear it from them any more. They call day & night, weekday & weekend, just to tell us (i.e. remind us) that something is abnormal. Duh. Seriously. Of course things are abnormal. Nothing about Jordan is normal. We know that already. And really what I hear is this: No matter how hard you work to feed her, or medicate her, or train her, no matter how many physical therapies she goes to, or drugs she takes, or doctors she sees, she's abnormal, and you aren't making her better. I'm really getting to the point of giving up. I feel like I'm killing myself for nothing. My god after 8 months of nonstop therapy, doctors, medicines, and tests, she still can't hold her head up. She still can't sit. She still doesn't smile, or put her hands in her mouth, or, hell, eat through her mouth.
When is it ever going to get better? Is this what she's going to be like at 30 pounds, 40 pounds, 10 years old, 20 years old. No one can tell us that; all they tell us is that yet one more thing is wrong. It's quite a list, and growing. Perhaps we'll stop the seizures, lower the blood pressure, stabilize the electrolytes, even get her to hold her head up, but then what? Then where do we go? Then what do we do? Will she see? Will she walk? Will she be able to go to school? Will she even know who we are?
So here's the deal doctors -- I just want you to quit calling until you can say something nice for once. Didn't your mothers teach you that?
And on a totally separate note: A huge THANK YOU to JAYNIE for the yummy, nummy dinner! It was delicious, and we even had enough for a leftover meal to come. Thank you soooooo much! We really needed that, especially today with chef Devon out with allergies. I had already resigned myslf to a bowl of Cocoa Krispies for dinner when you showed up and saved the day.
28 August 2006
A Good Time Was Had By All
It was a good weekend. Devon & Avery had a great trip to Grandma Linda & Grandpa Earl's house in Hope, BC. Avery was very comfortable there very quickly, and had lots to tell me as soon as she got home. She also told me that she missed Jordan & me, and that she loved me, and that I was her best friend. My heart melted, of course. She and Devon reported that we'll be spending alot of time in Hope, and that it's wonderful beyond words. I can't wait to go check it out for myself. (I have driven through there a number of times, but don't really remember the specific details of the town.)
Jordan & I had the closest thing to a relaxing weekend I can think of. I basically slept all day on Saturday. I was feeling like a true zombie, much more tired than usual. I figured the weeks of sleepless nights were catching up with me, and it was great to just be able to sleep all day, knowing Nana Noma was taking care of Jordan. I solved a bit of the zombie mystery today. In addition to the weeks of sleepless nights that certainly contributed to my ultra-napping were the 2 Tylenol PM tablets I took around noon yesterday for my headache. I didn't notice until today that they were PM!!!! I thought they were just Tylenol. It all makes so much sense now. I was destined to get a good sleep yesterday. 
Sleepy, sleepy, sleeping. Hip hip hooray!
Get off my boppy, Daisy!
Today I didn't sleep nearly as much, but hung out in the yard with Jordan, reading, resting, and watching Daisy play with her friend "Sammy Squirrel" (Avery's term) all over the yard and in the trees. Is it possible for a cat and a squirrel to be friends? They do seem like it, and the squirrel even comes to the door some mornings, "waiting" for Daisy to come out and play. 
Jordan went "swimming" in the blue bucket, which turned into a bath. She's pretty grubby these days with the cold sweats, the drooling, the spit-up, and the diarrhea (from the augmenten). In fact, she got 2 baths today, the second after her pesto-like poop fountained out the top-back of her diaper all over my leg and Nana Noma's carpet. Holy crap! Literally. Only one more dose of augmenten left, so hopefully that will go away soon.
This isn't so bad, Nana Noma's thumb is good, quit looking at my fat rolls!
Well, here it is in the middle of the night again, with a full week to look ahead to. I'm a little bit anxious about tomorrow. I have a whole list of labs to get collected for little miss screamer, and they won't be easy. They will be sent all over the country for analysis, and the results to ~6 or more doctors. That's alot of paperwork. And while I really appreciate the new hospital up the road, I hate to be the guinea pig that has to test out the system. I'm also pretty anxious about the test results themselves. The crystals in the urine & urinary tract infection mysteries are leading to some pretty scary possibilities. I know that we want a diagnosis, but I also know that we don't want a bad diagnosis (and by bad at this point I basically mean fatal during childhood). With these types of tests that's certainly, but not necessarily, on the table.
Now there are bruises and track marks.
I wonder how long this will take to heal?
Call me crazy & knock on wood, but I think Jordan is slowly starting to come out of her steroid-induced rage. She still screams, don't get me wrong, but I think she's screaming a little bit less, and sleeping a little bit more. Or, maybe it's just wishful thinking. We'll see, only 2 more shots of ACTH, then a couple days to get it flushed through the system, and viola! - a whole new IS free Jordan (that's the plan anyway).Hey, we'll take the sleep anyway we can get it, even if it looks this silly. Good night twinkle toes.
26 August 2006
Just the Thumbs, Please
I managed to sneak out of the house today for a quick trip to Albertson's, in search of cat litter (I happen to like their store-brand the best, don't ask me why). It was very strange. I was there by myself, zombie-like with exhaustion, walking up and down each aisle remembering what a super market really does have to offer. And I didn't have to push the cart exactly down the middle of the aisle so that Avery couldn't reach things and throw them in or knock them down as we go. Wow, supermarkets have TONNES of stuff in them! I forgot. Did I mention that already?
A rare moment of sleep.
And then I got a little sad, again (sadness tends to happen randomly throughout the days). I realized as I walked that I was unconsciously looking for special treats or toys that Avery & Jordan might enjoy, something to break the doldrums of any random day. I looked around, perhaps for some new color crayons for Avery, or finger paints if they happened to have any. Then at some point I realized that there really is nothing I can get for Jordan. Nothing. Not a stuffed animal, or a new sippy cup, or a bowl & spoon set, or a rattle, or even a teething ring or chewy toy. Yes she's getting teeth, but she can't hold the ring, and she'd gag if I tried to put it in her mouth. Of course we have these things at home and she doesn't need anything else, but still, sometimes, as a parent, you want to get something new or special or even just fun or silly for your child.And suddenly I remembered driving in the car with Avery at almost 4-months-old, and watching her (in the series of car mirrors) actually playing with her pyramid rattle (from Kelly). Then I thought of 8-month-old Jordan, unable to hold her head up, let alone hold or play with a toy. In the end Jordan got a package of gigantic binkies -- the biggest ones I've ever seen (and believe me, I've seen alot of binkies). We'd love it if she could actually use a binky (i.e. keep it in her mouth), but alas, once again & $3.46 later, nope. No go on the small binkies, no go on the round binkies, no go on the oval binkies. Not the hospital style binkies, not the fancy binkies, not even the 1.5- to 3-year-old binkies. Just mommy's thumbs for her. No binkies, or toys, or rattles, or stuffed animals will do, just mommy's thumbs.
So, Avery got a new cushie ball (she's very into throwing and catching these days), and Jordan gets the same old, sore mommy thumb whenever she needs to settle down. And sometimes it even works.
At least my newly pedicured feet are fun, and help keep things light.
Well, if your toes can't have fun, what can!? You should have heard the chuckles at the pedi store! Seeeeeee, FUN for everyone. And why is it that nurses seem to appreciate them the most?
Just The Same, Only Different
Different:
-Devon & Avery went to Hope, BC, to help Grandpa Earl & Grandma Linda get unpacked and wired-in (TV, DVD, CD, wireless internet, phone systems, etc.).
[Note: The border people DO call the other parent when only one parent is crossing with a child, even if you have a signed "note."]
-Jordan & I are spending the weekend at Nana Noma's for a change of scenery, and for the help. We're taking turns sleeping (me during the day, Nana Noma at night) so one of us can be up with "the screamer" as necessary.
[Note: Jordan is NOT sleeping much more than a couple hours here and there, and is really wearing us out. She's the one that should be worn out by now, I'd think.]
-Jordan got Nana Noma's full attention today, and didn't have to battle Avery for it. She went on a wagon ride around the block with Nana, sat on Nana's lap most of the day, and got Nana to feed her -- all things Avery usually gets to do. Jordan even got to wear Avery's pajama top to bed tonight, and by golly, it FIT! The pants were way to long, but the shirt fit! My godness, what a behemoth we have now.
-Devon & Avery went to Hope, BC, to help Grandpa Earl & Grandma Linda get unpacked and wired-in (TV, DVD, CD, wireless internet, phone systems, etc.).
[Note: The border people DO call the other parent when only one parent is crossing with a child, even if you have a signed "note."]
-Jordan & I are spending the weekend at Nana Noma's for a change of scenery, and for the help. We're taking turns sleeping (me during the day, Nana Noma at night) so one of us can be up with "the screamer" as necessary.
[Note: Jordan is NOT sleeping much more than a couple hours here and there, and is really wearing us out. She's the one that should be worn out by now, I'd think.]
-Jordan got Nana Noma's full attention today, and didn't have to battle Avery for it. She went on a wagon ride around the block with Nana, sat on Nana's lap most of the day, and got Nana to feed her -- all things Avery usually gets to do. Jordan even got to wear Avery's pajama top to bed tonight, and by golly, it FIT! The pants were way to long, but the shirt fit! My godness, what a behemoth we have now.
A walk around the block with Nana, which she loved & eventually nodded off during. Then a motorcycle screamed by, and honked, too. I guess Jordan decided to scream at him for that, and so was the end of the wagon nap-time.
See big sis, not so much bigger than me, now, are you!?
-Jordan got a tooth! It popped right out of the left front gum, and the right side isn't far behind. No wonder Nana & I have such aching thumbs.
[Note: no bottom teeth yet, and this one is coming out slowly]
-Jordan rolled herself over with absolutely no help today. She rolled from tummy to back. I'm not sure if she did it on purpose or if she'll be able to do it again, but she definitely did it. She got her arm underneath her and pushed until she rolled right over (it took about 5 minutes total). She continued screaming while she was on her back, though, so I don't think it made her particularly happy.
[Note: she may have "cheated" as her arms and legs are as stiff as boards, but on the other hand, she didn't have it easy trying to roll all those 20 pounds over]
-I found that putting Jordan in a laundry basket works extremely well for making her sit up, even when she's really mad about it.
-Daisy gets to play & snuggle with Jordan and me
[instead of being chased, rough-housed, dragged around, and teased by Avery: "Daisy is a wild child!" followed by shrieks of joy and laughter, and a cat trying to get the heck away]
Can you bend like this? Look into my green eye & my blue eye
The Same:
-Jordan's incessant screaming
-Jordan's lack of sleeping
-Jordan's sticky, chunky neck rolls from all the spit up dripping out her mouth (no matter how many times a day it gets washed)
-My deep, utter, overwhelming exhaustion
-Nana's and my very sore thumbs
-Jordan's big poop festivals from the diarrhea effects of the Augmenten (followed by a couple of baths and more than a couple loads of laundry each day)
-Jordan's "Puff Baby" look
-Jordan's cold sweats
-Jordan's fussiness, despite the Tylenol & Ibuprofen she's been getting all day & night
-Jordan won't suck on an "ahhhh" (binky, soother, pacifier, we go with Avery's terminology now), even though I found her a BIG one at the store tonight. Nope, she can tell, it's not a thumb. "How gullible do you think I am?" she must wonder
-Jordan's infant-like behaviors (regression is a side effect of ACTH)
-Jordan's inability to nurse (since ~3 weeks ago, boy has this been a roller coaster of an activity for the last 8 months)
HAPPY BIRTHDAY GRANDPA EARL*
*I'm pretty sure that's what Jordan just screamed, perhaps loud enough for you to hear all the way from Vancouver, Washington.
ACTH Countdown: 45 days done, 3 days to go!!
25 August 2006
I'm Too Sexy. . .
Avery models her new park ranger vest - a half-birthday gift from Grandpa-Grandpa John & Dona. THANKS! It's great for collecting worms, leaves, and bugs to put in my pockets and bring into the house.
Even daddy poses for the camera this time.
Trying out her new leotards, and practicing her summersaults for gymnastics class that starts after Labor Day
. The red boots? Just plain F-U-N, I guess.
. The red boots? Just plain F-U-N, I guess.
Hanging out in Nana Noma's 
yard.
The red-pants girls (Avery picked them out for today so they could match) Snuggles for Jordan.
I can't believe I put this one on the blog, but here we are, the snuggle binky ("ah") girls. This was Avery's idea that we all needed a binky. Mommy & Jordan tolerated it just long enough for daddy to snap this picture.
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