Two doctor appointments this week, a whole lot of endo pain, a sweet husband with an eye problem. There; you're all caught up. No?
Tuesday was met with horrible endo pain and an appointment at the GI doc for D. GI doc increased Zantac slightly for D's weight gain (15 pounds, 12 oz, yo) and promised to send a note to the feeding specialist to have them call me about starting therapy sessions. She watched me feed D a bottle and saw how she fights and fusses, and said that this plus her eating almost half of her formula at night are typical of a baby with severe reflux that's starting to get better but who still has the food aversion. She said that at night the baby is so sleepy that the hunger instinct just takes over and overrides the desire to push the bottle away, so they eat more. She did feel that D needs some therapy and didn't seem pleased that the specialist sent us away without therapy and also that the specialist hadn't sent her any reports back.
Unfortunately on Thursday the feeding specialist called Alan instead of me, and apparently he was kind of rude and told her that no, we didn't want to do any therapy. So i'm not really sure what to do at this point :(. Poor kid. i can tell you that i'm not going to put formula in the sippy cup as the therapist suggested because i don't want her to associate sippy cups with pain. Sigh.
Thursday we had D's 6 month appointment. 12 pounds 13 oz lol. Also nearly 25 inches. We had asked the pedi about a letter that discusses D's medical history, issues, and potential issues moving forward to submit to the "adoption assistance" people. We don't know yet if D will qualify as "special needs", which means she'll continue to get some benefits from the state (actually from a block grant from the feds). She would get slightly less than her current board stipend, continue on Medicaid, qualify for something like $5k for college (not sure if annually or whatever) in-state down the road, some preferential treatment for some schools like magnet schools, and would qualify for the full $12k federal tax credit at the time of finalization. Of course, we view this as HER money, not ours, and while it makes us really uncomfortable to have to fight for it, we also feel like it's her benefit and we have to be her advocate and get what she deserves if she does, and we would invest this for her future.
Anyway, we asked the pedi to please write a letter that outlines laryngomalacia, reflux, whether or not they may have been caused by either the lack of prenatal care or the drugs/cigarettes/etc, and any future complications that could happen. She said she began the letter but it was really hard to write. One thing she wanted us to ask the caseworker (we did) is whether or not a Barrett score was done on D. This is a test to estimate gestational age based on factors like skin, hair, position, muscle tone, etc. Anyway it wasn't in the medical history the pedi has, and could make a huge difference. Apparently there was notice that the birthmom said that she thought she was in the 7th month, but D was pretty big for that so it's kind of suspect info.
Otherwise everything went fine with the appointments and all, other than D getting a fever from all the shots :(.
Developmentally she's still amazing me on a daily basis. The other day she pulled herself up on my fingers and then walked 9 steps while holding my fingers. That was Tuesday i think. Then Wednesday she balanced herself standing for about 3 seconds. And then today she was cruising (which means walking while holding onto furniture) at the coffee table and decided that she apparently does not like walking sideways, and instead she turned so that her right arm was draped over the coffee table like some kind of frat boy, and took a few steps walking forward. Then she tried to reach for something on the table with her right hand, and couldn't balance and fell backwards on her tushie. She's such a sweet little clown!
Friday, December 11, 2009
Monday, December 7, 2009
Titles are hard to think of!
This will just cover a few things.
1) Still no sign that the state has filed TPR. They were supposed to do it by October 15, but as of November 6 (i think) they had not. The review board set up another review meeting for December 1, and as of then it STILL had not been done! And the review board set up a court date for January 7, so we'll see if the state files by then or gets chewed out by the state.
2) Tonight i got a call from the state about a newborn, but didn't have to say no because they asked if D was still in the home and i said yes, and they said that wouldn't work. Someone will get a good call :).
3) D is really coming along in the milestones, at least the physical ones. Tonight she pulled herself up using my fingers (i didn't move them so she had to adjust herself to them) and then took NINE steps holding onto my fingers. She's cruising furniture (somewhat), but still only belly crawling backwards. i'm thinking she's going to skip crawling and walk instead.
This week we have a GI appointment tomorrow and her 6 month exam on Thursday. The only thing i'm a little worried about is that verbally she's not ahead. Not that she's behind, but everything else she's ahead, so... Okay that sounds silly. But she doesn't repeat sounds.
She also seems to have more of an issue with reflux right now, so hopefully tomorrow's appointment will help with that.
1) Still no sign that the state has filed TPR. They were supposed to do it by October 15, but as of November 6 (i think) they had not. The review board set up another review meeting for December 1, and as of then it STILL had not been done! And the review board set up a court date for January 7, so we'll see if the state files by then or gets chewed out by the state.
2) Tonight i got a call from the state about a newborn, but didn't have to say no because they asked if D was still in the home and i said yes, and they said that wouldn't work. Someone will get a good call :).
3) D is really coming along in the milestones, at least the physical ones. Tonight she pulled herself up using my fingers (i didn't move them so she had to adjust herself to them) and then took NINE steps holding onto my fingers. She's cruising furniture (somewhat), but still only belly crawling backwards. i'm thinking she's going to skip crawling and walk instead.
This week we have a GI appointment tomorrow and her 6 month exam on Thursday. The only thing i'm a little worried about is that verbally she's not ahead. Not that she's behind, but everything else she's ahead, so... Okay that sounds silly. But she doesn't repeat sounds.
She also seems to have more of an issue with reflux right now, so hopefully tomorrow's appointment will help with that.
Wednesday, December 2, 2009
Insurance update
So my HR department contacted the insurance to tell them about there not being in-network options for LAPEX in Nashville. The insurance company came back with a list of Vandy doctors who supposedly do LAPEX.
i have mixed feelings. On one hand, this is good news because it would only cost $2000 instead of $6000 deductible. i wouldn't have to leave the state, and i wouldn't have to beg a judge for permission to take D out of state or to make the incredibly difficult decision to either leave Alan at home with D and recover alone (or at my brother's insane house) or to leave D with someone at about the age when she'll be having separation anxiety to take Alan with me. Those are wonderful things.
On the other hand, i've never heard of these docs. i'm not even entirely convinced that they do LAPEX, or full LAPEX. (Cliff's Notes for newer readers: normal laparoscopy burns the endo off with lasers, but it returns. Lapex, or laparoscopic excision of endometriosis actually cuts the endo out so it can't return.) None of the endo forums or websites online list these docs as endo experts able to do LAPEX. i called to speak to the nurse but was transferred to the person who schedules surgeries, and she told me she's the one who orders the equipment but could not tell me what instrument the surgeons use to perform the LAPEX. (LAPEX is *so* specialized that there's not a mass-produced surgical piece of equipment. Most of the qualified surgeons have designed their own instrument. One uses a teeny tiny pair of electrical scissors, one uses lasers not to burn the endo off but to peel it away, etc.) She didn't look it up, either. i have an appointment with one of the surgeons on 12/30, so hopefully that will shed some light on it. Meanwhile, if any lurkers out there happen on this blog and know anything about the docs at Vandy and their experience with this specific surgery, please comment or email me!
i have mixed feelings. On one hand, this is good news because it would only cost $2000 instead of $6000 deductible. i wouldn't have to leave the state, and i wouldn't have to beg a judge for permission to take D out of state or to make the incredibly difficult decision to either leave Alan at home with D and recover alone (or at my brother's insane house) or to leave D with someone at about the age when she'll be having separation anxiety to take Alan with me. Those are wonderful things.
On the other hand, i've never heard of these docs. i'm not even entirely convinced that they do LAPEX, or full LAPEX. (Cliff's Notes for newer readers: normal laparoscopy burns the endo off with lasers, but it returns. Lapex, or laparoscopic excision of endometriosis actually cuts the endo out so it can't return.) None of the endo forums or websites online list these docs as endo experts able to do LAPEX. i called to speak to the nurse but was transferred to the person who schedules surgeries, and she told me she's the one who orders the equipment but could not tell me what instrument the surgeons use to perform the LAPEX. (LAPEX is *so* specialized that there's not a mass-produced surgical piece of equipment. Most of the qualified surgeons have designed their own instrument. One uses a teeny tiny pair of electrical scissors, one uses lasers not to burn the endo off but to peel it away, etc.) She didn't look it up, either. i have an appointment with one of the surgeons on 12/30, so hopefully that will shed some light on it. Meanwhile, if any lurkers out there happen on this blog and know anything about the docs at Vandy and their experience with this specific surgery, please comment or email me!
Tuesday, December 1, 2009
Crazy proud mama!
D had her first 100% poop in the potty tonight! A few weeks ago i was able to catch her poop after she'd gotten started once (or maybe twice), but never when she hadn't. Putting her on the potty just distracted her, but yesterday she was grunting heavily and kept going on the potty. She may have been a little constipated so she didn't ever actually poop, poor thing.
Today, as soon as she started grunting, i took her up to the potty. She tried for a bit and gave up. Then she grunted some more and this time she succeeded 100% on the potty. Amazing!
And the weird thing is when she was a (little) baby she used to poop while eating a bottle. Now she poops while eating solid food in the high chair. Odd.
Today, as soon as she started grunting, i took her up to the potty. She tried for a bit and gave up. Then she grunted some more and this time she succeeded 100% on the potty. Amazing!
And the weird thing is when she was a (little) baby she used to poop while eating a bottle. Now she poops while eating solid food in the high chair. Odd.
6 months old!
i am absolutely flummoxed that this little girl is actually six whole months old! Six months ago i didn't know she existed, i didn't know she would soon become the next love of my life, i had no idea what a change my world was going to go through just 2 days later. Wow, it's pretty overwhelming!
i guess you can say things are a little better. At any rate i discovered that DH is having issues getting her to eat, too, lol. i'm starting to think that she may be trying to drop a feeding in the evening, which i'm not sure what to do about exactly. If she liked cereal, i'd give her a big meal in the evenings, but i don't know how much veggies and fruits she'll eat and she hates cereal. She's already eating about 1 Tbsp of veggies and fruit in the evening and then most days another 2 tsp of something in the morning with Alan (when he has time). Maybe if we were to drop this meal, she could eat more in her other bottles, stretch them out just a wee bit, eat more solids, etc. i think i'll mention it to the pedi at her 6 month appointment. For those curious, here's her typical food schedule these days:
6:30 am (all times are give-or-take some) - about 4.5 oz
8:30 am (when Alan has time) - 2 tsp fruit and/or veggie
9:30 am (daycare) - about 5 oz
12:30 pm (daycare) - about 4.5 oz
3:30 pm (daycare) - about 4.5 oz
5:15 pm (home) - 1.5 oz with her meds; she falls asleep while eating
6:00 pm (home) - 2 tsp one veggie plus 1 tsp another veggie or fruit
6:30 pm (home) - usually only about 2-3 oz
8:00 pm (home/bedtime) - about 6-7 oz
Then she usually wakes around 3:30 am and wants about 6 oz, for a grand total of about 34-36 oz per day.
D's balance is getting so good! She now stands and holds onto furniture (and this silly contraption Alan made with a box and a length of PVC pipe) with one hand, and has even taken a few steps. She's slow, she's deliberate, but she's a cruiser!
We had a meeting yesterday with D's caseworker and the county adoption specialist. We talked a bit about whether D would qualify for adoption assistance (the answer is maybe; we won't know for a while yet for sure), and that's about it. Not much else to report except that the petition for TPR *still* has not yet been filed with the state. It was supposed to be done by October 15. Grrrr!
i guess you can say things are a little better. At any rate i discovered that DH is having issues getting her to eat, too, lol. i'm starting to think that she may be trying to drop a feeding in the evening, which i'm not sure what to do about exactly. If she liked cereal, i'd give her a big meal in the evenings, but i don't know how much veggies and fruits she'll eat and she hates cereal. She's already eating about 1 Tbsp of veggies and fruit in the evening and then most days another 2 tsp of something in the morning with Alan (when he has time). Maybe if we were to drop this meal, she could eat more in her other bottles, stretch them out just a wee bit, eat more solids, etc. i think i'll mention it to the pedi at her 6 month appointment. For those curious, here's her typical food schedule these days:
6:30 am (all times are give-or-take some) - about 4.5 oz
8:30 am (when Alan has time) - 2 tsp fruit and/or veggie
9:30 am (daycare) - about 5 oz
12:30 pm (daycare) - about 4.5 oz
3:30 pm (daycare) - about 4.5 oz
5:15 pm (home) - 1.5 oz with her meds; she falls asleep while eating
6:00 pm (home) - 2 tsp one veggie plus 1 tsp another veggie or fruit
6:30 pm (home) - usually only about 2-3 oz
8:00 pm (home/bedtime) - about 6-7 oz
Then she usually wakes around 3:30 am and wants about 6 oz, for a grand total of about 34-36 oz per day.
D's balance is getting so good! She now stands and holds onto furniture (and this silly contraption Alan made with a box and a length of PVC pipe) with one hand, and has even taken a few steps. She's slow, she's deliberate, but she's a cruiser!
We had a meeting yesterday with D's caseworker and the county adoption specialist. We talked a bit about whether D would qualify for adoption assistance (the answer is maybe; we won't know for a while yet for sure), and that's about it. Not much else to report except that the petition for TPR *still* has not yet been filed with the state. It was supposed to be done by October 15. Grrrr!
Wednesday, November 25, 2009
Small update
Alan came home early because he knew i was having a crappy night. He's truly the best. He fixed the steam cleaner and is finishing up the mess now. i'm *almost* starting to feel sorry for the dog, who has been outside the last 5 1/2 hours.
Pumpkin pie is in the oven with about 20 minutes left to bake, and it looks *good*. We shall see, er, taste, tomorrow night. i also chopped up the nuts for the nut-stuffed squash for tomorrow. The baby food machine is really a handy little food processor lol. Better than the other 2 i have.
And finally, i looked back at the daycare sheet and what did i see? Not only did they feed her at 4 (we'd asked them to feed around 3:30 to give her a chance to get hungry in time for her dinner around 6 when she wakes from her 5:15ish nap), but it looks like they fed her twice. (The way they used to do where she wouldn't finish a bottle and they'd come back and feed it later). i had asked them not to do that anymore, just throw out whatever was left from a bottle and mark how much was left. Normally now it will say "All" or "1/2 " and on the next line "left" in the "how much" spot, to mean she left 1/2 oz in the bottle. It looked like she'd left 1 1/2 oz from both the first and third bottles, but upon looking back, the 4:00 bottle says "1 1/2" and on the next line it says "all." i don't know for sure obviously, but i think that means that they fed her around 4 and she ate 1 1/2, then they tried again later and she finished the bottle. If that's the case, it's no wonder she wasn't hungry for me at 6:00!
i still feel very discouraged when i feed her and she gets fussy super fast, but at least now i know why she was so fussy tonight and why i was so discouraged tonight.
Pumpkin pie is in the oven with about 20 minutes left to bake, and it looks *good*. We shall see, er, taste, tomorrow night. i also chopped up the nuts for the nut-stuffed squash for tomorrow. The baby food machine is really a handy little food processor lol. Better than the other 2 i have.
And finally, i looked back at the daycare sheet and what did i see? Not only did they feed her at 4 (we'd asked them to feed around 3:30 to give her a chance to get hungry in time for her dinner around 6 when she wakes from her 5:15ish nap), but it looks like they fed her twice. (The way they used to do where she wouldn't finish a bottle and they'd come back and feed it later). i had asked them not to do that anymore, just throw out whatever was left from a bottle and mark how much was left. Normally now it will say "All" or "1/2 " and on the next line "left" in the "how much" spot, to mean she left 1/2 oz in the bottle. It looked like she'd left 1 1/2 oz from both the first and third bottles, but upon looking back, the 4:00 bottle says "1 1/2" and on the next line it says "all." i don't know for sure obviously, but i think that means that they fed her around 4 and she ate 1 1/2, then they tried again later and she finished the bottle. If that's the case, it's no wonder she wasn't hungry for me at 6:00!
i still feel very discouraged when i feed her and she gets fussy super fast, but at least now i know why she was so fussy tonight and why i was so discouraged tonight.
i hate today
Yeah, yeah, it's the day before Thanksgiving and, as a "friend" said, i should just STFU and be grateful for what i have. But this day sucks sucks sucks.
First (and minorly) they told us on Monday that we would be leaving around 1 or 2 today. We left at 3:45 (our usual end time is 4:15). i thought i'd have time to do the grocery shopping so i didn't make Alan go, so i was really rushed leaving work to pick D up.
She didn't eat too well at daycare today. So... added pressure. Yippee. And of course, as always, she wouldn't eat for me. i don't know what the deal is, but it's so beyond discouraging. To the point where i was reduced to a sobbing mess by 6:30. Vented to the above "friend" and that just made me feel so good.
Got home from work to find one of my dogs had peed on the corner of his elevated dog bed. For the second time in 2 weeks. He was a rescue and was super hard to house train, but he has been reliable for probably 2 solid years. i don't know what's doing it now. He's getting as much, if not more, attention now than he was pre-D.
So, after i got D to bed, but before i made tomorrow's bottles or the pumpkin pie or homemade rolls for tomorrow that i should really be making tonight (AT LEAST one of them), i set about cleaning said dog piss. It didn't seem to be coming up, and i discovered that the f*ing steam cleaner isn't working right. The brushes aren't spinning.
i am seriously beyond despondent right now. i just want to cry myself to sleep, but there's too much to do still and instead i'm here venting on this blog because at least i know the blog won't tell me to shut up. (And if you feel like leaving an ugly comment, i don't blame you, but just don't, okay? Not today.)
And for the record, i appreciate the hell out of what i have. It brings me to tears every single day. i am so incredibly lucky to have Alan and D and even the full-of-piss dogs. But i really wish i were better for them, especially D. She deserves the best and gets stuck with me. i can't even feed her. Everyone else can feed her but me. i don't know what i'm doing wrong. i seem to be doing what they're doing, but she fights me. And babywearing worked for a few days but no longer. Now instead of fighting after 3 ounces and eating 1-2 more when worn, she fights after 1 ounce and eats 1-2 more when worn. And i'm scared about what happens on Friday. i mean, most days i only feed 2 bottles, and i know she gets enough to eat in her other bottles that it isn't the end of the world (even if it feels like it sometimes). But Friday i'll be feeding her all of her bottles except maybe 1. It will probably be okay, but it feels really scary and frustrating.
And i hate myself for showing my frustration in front of D. (No, i don't yell at her or anything, but i do cry, and i know she's starting to notice.) And i don't know how not to. And i wish i did because i could be such a better mom than i am. And yeah, i go through this every day. It sucks.
First (and minorly) they told us on Monday that we would be leaving around 1 or 2 today. We left at 3:45 (our usual end time is 4:15). i thought i'd have time to do the grocery shopping so i didn't make Alan go, so i was really rushed leaving work to pick D up.
She didn't eat too well at daycare today. So... added pressure. Yippee. And of course, as always, she wouldn't eat for me. i don't know what the deal is, but it's so beyond discouraging. To the point where i was reduced to a sobbing mess by 6:30. Vented to the above "friend" and that just made me feel so good.
Got home from work to find one of my dogs had peed on the corner of his elevated dog bed. For the second time in 2 weeks. He was a rescue and was super hard to house train, but he has been reliable for probably 2 solid years. i don't know what's doing it now. He's getting as much, if not more, attention now than he was pre-D.
So, after i got D to bed, but before i made tomorrow's bottles or the pumpkin pie or homemade rolls for tomorrow that i should really be making tonight (AT LEAST one of them), i set about cleaning said dog piss. It didn't seem to be coming up, and i discovered that the f*ing steam cleaner isn't working right. The brushes aren't spinning.
i am seriously beyond despondent right now. i just want to cry myself to sleep, but there's too much to do still and instead i'm here venting on this blog because at least i know the blog won't tell me to shut up. (And if you feel like leaving an ugly comment, i don't blame you, but just don't, okay? Not today.)
And for the record, i appreciate the hell out of what i have. It brings me to tears every single day. i am so incredibly lucky to have Alan and D and even the full-of-piss dogs. But i really wish i were better for them, especially D. She deserves the best and gets stuck with me. i can't even feed her. Everyone else can feed her but me. i don't know what i'm doing wrong. i seem to be doing what they're doing, but she fights me. And babywearing worked for a few days but no longer. Now instead of fighting after 3 ounces and eating 1-2 more when worn, she fights after 1 ounce and eats 1-2 more when worn. And i'm scared about what happens on Friday. i mean, most days i only feed 2 bottles, and i know she gets enough to eat in her other bottles that it isn't the end of the world (even if it feels like it sometimes). But Friday i'll be feeding her all of her bottles except maybe 1. It will probably be okay, but it feels really scary and frustrating.
And i hate myself for showing my frustration in front of D. (No, i don't yell at her or anything, but i do cry, and i know she's starting to notice.) And i don't know how not to. And i wish i did because i could be such a better mom than i am. And yeah, i go through this every day. It sucks.
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