My boyfriend is, hands down, the better parent to Lily.
Its disturbing to realize. I'm her mom. I should be the best parent for her. Right? But, I'm not. Hey, at least I can admit it.
I am wrapped up in Lily's medical problems. I think more about them, sometimes, than I think about her. I'm constantly thinking about it, researching it. I'm the one, during her bad spells, that is on the phone with the doctors, coordinating things and getting test results.
I am pretty much constantly tired, so its hard for me to get up the energy to even want to do anything with Lily. (I do force myself to take her to the park and such, though.) I do not like people, in general, so if we are at the playground and have it to ourselves...then another group come along, I will immediately pack Lily up to head home. This has already caused Lily some issues in associating with groups of kids. (She prefers to sit while the others play, and play by herself while the others are doing something else.)
I lose my temper with her much more easily than he does. However, as an aside to that, Lily listens to me much better than she listens to him.
He lays down with her every night to get her to sleep. I'm of the mind we should just say goodnight, give her sippy, close the door and let her fall asleep on her own. (Now, I'm not totally heartless, if she's still crying after 10 minutes we can try something else...)
He helps her eat during dinner. I'm content just to give her the plate and let her go at it any way she wants to go at it.
I guess my only plusses as a parent are that I'm utterly unselfconscious about doing silly things with Lily. Go out and play in the puddles for a half-hour? Sure! Dance w/ her around the living room floor for 10 minutes straight? Of course! (Now, he tries to dance with her, but Lily won't let him...) Play in the faucet at the back of the house for 15 minutes on a hot day? Coming right up!
And yet.... for all his pros to my cons... Lily is more attached to me. That makes me feel guilty as hell sometimes. I'm the one Lily turns to when she gets a boo-boo. I'm the one Lily asks to carry her. I'm the one Lily goes to for snuggles when she's not feeling well. I'm the one who Lily steals food from.
I don't know what to think anymore.
The Feisty Lily
Thursday, August 18, 2011
Wednesday, August 17, 2011
I love my daughter. I do not like my two-year old.
I love Lily to pieces. She's the light of my life. She's also annoying the crap out of me today.
I'm just ill-tempered, and I don't really know why. She's not even being that bad, she's just being...annoying.
"Did you hear me?"
"Yes, baby, I heard you."
"Did you hear me, mommy? Did you hear me?"
"Yes, Lils. I heard you."
"Did you hear me?"
At this point, I crouch down in front of her, make eye contact and say "Yes, baby. I heard you. What do you want?"
It stops. Thank God.
Its a half hour until her bedtime, and I can't wait. I seriously need the little booger to go to sleep. I hate being in a bad mood with her, especially when I know its not her fault. I've forced myself to take her to the park the past couple days, even though its one of the very last things on my list of things I feel like doing.
I had called Dahlberg yesterday to set up Lily's new babysitter on the busroute. The driver said it wouldn't be a problem. He called me back today and said he wouldn't be able to do it. That it was outside his route. Like...2 minutes outside.
So, I called Dahlberg. Talked with the administrator, who said to give her a minute. She called back a couple hours later, and said she'd begged the bus driver. She'd told him that if begging didn't work, she'd send him a sad-faced picture of Lily, and he would have no choice but to give in. He gave in. Haha!
So, Lily will go to Dahlberg for another year. The administrator said that they wanted Lily to continue with them, that she was such a joy - and with her fragile health, she needed them too. It was nice to hear a 'principal' actually caring about a student.
I'm just ill-tempered, and I don't really know why. She's not even being that bad, she's just being...annoying.
"Did you hear me?"
"Yes, baby, I heard you."
"Did you hear me, mommy? Did you hear me?"
"Yes, Lils. I heard you."
"Did you hear me?"
At this point, I crouch down in front of her, make eye contact and say "Yes, baby. I heard you. What do you want?"
It stops. Thank God.
Its a half hour until her bedtime, and I can't wait. I seriously need the little booger to go to sleep. I hate being in a bad mood with her, especially when I know its not her fault. I've forced myself to take her to the park the past couple days, even though its one of the very last things on my list of things I feel like doing.
I had called Dahlberg yesterday to set up Lily's new babysitter on the busroute. The driver said it wouldn't be a problem. He called me back today and said he wouldn't be able to do it. That it was outside his route. Like...2 minutes outside.
So, I called Dahlberg. Talked with the administrator, who said to give her a minute. She called back a couple hours later, and said she'd begged the bus driver. She'd told him that if begging didn't work, she'd send him a sad-faced picture of Lily, and he would have no choice but to give in. He gave in. Haha!
So, Lily will go to Dahlberg for another year. The administrator said that they wanted Lily to continue with them, that she was such a joy - and with her fragile health, she needed them too. It was nice to hear a 'principal' actually caring about a student.
Feeding Dora
Cuteness abounds!
(quick post)
This morning, while Kyle was feeding Lily, he was also required to feed the Dora the Explorer doll, and a little kangaroo stuffie. Repeatedly. While Lily made nomming sounds to accompany the feeding.
Apparently he also had to hold Dora in his lap. -snickers-
Things daddies do in the morning to get their rugrats to eat.
also...
Wow, I don't know what's gotten into Lily, but she's became a bottomless pit lately. Eating everything in sight.
(quick post)
This morning, while Kyle was feeding Lily, he was also required to feed the Dora the Explorer doll, and a little kangaroo stuffie. Repeatedly. While Lily made nomming sounds to accompany the feeding.
Apparently he also had to hold Dora in his lap. -snickers-
Things daddies do in the morning to get their rugrats to eat.
also...
Wow, I don't know what's gotten into Lily, but she's became a bottomless pit lately. Eating everything in sight.
Monday, August 15, 2011
LI'l Bee
Lily is due home from her grandparents house today. I'm eager to see the little minx, even though I know after about an hour, I'll be ready to send her back. Haha. Bad mommy, I know.
I'm very grateful that my boyfriend's parents are willing to take her for a weekend a month, sometimes more if we need it. Its nice to know we have time to get things done. See, Lily is still very attached to me. VERY attached. I recently had a friend over this weekend, Abby (with Noah and Micah), and watching Noah and how good he was at entertaining himself made me realize how clingy that Lily is. Its not necessarily a bad thing, but a pain in the butt when you are trying to get things done.
Noah will take his mom's iphone and play games on it. He'll run around like a heathen, completely ignoring us. Lily....well, Lily needs mommy or daddy. Pretty constantly. She's getting better at it when it comes to watching Dora, but that's about it. She rarely plays on her own, she needs us to play with her. When she's eating, most mealtimes end with pleas for hugs and washing her hands. She doesn't like to go to bed on her own. We generally only get little 5 minute snatches throughout the day of Lily not needing us for something. Luckily, we both love playing with her.
We're hopefully moving this weekend, and getting a dog not long after that. I'm looking forward to having the dog. I think a dog is vastly different from a cat, and Lily will hopefully fall in love with it and be able to spend more time with it and leaving us to get things done.
We're looking at getting a boxer pup. It seems to be one of the best breeds for children. We're going to do everything possible to make sure Lily and the dog develop a strong bond. We already know we're going to end up taking the dog out on like six walks a day. At my boyfriend's house, she LOVES taking their dog on a walk.
I think a dog will be a welcome part of the family very easily. Not to mention I just plain out like dogs better. I love Posey, but I don't like him very much half the time! Haha.
I am so, so blessed that Lily has found that magic number with her medicine. That she's doing so much better. I love that I can 'race' her for a half block or so. That, even though it drives me nuts at times, she's always wanting to go to the playground. That she wants to be outside and playing. (Yay for a fenced in backyard where mommy can sit on the porch occasionally and let Lily run around safely in the grass!) She already has a tricycle. We're looking to get her a little slide because she adores the slides at the playgrounds. She'll have a big room to herself that we can set up to be the ultimate indoor play area. Not to mention the three season room on the back where she can play even when its raining.
My daughter is the light of my life, and I'm so glad things seem to be going in a direction where I can truly give her a good life. =)
I'm very grateful that my boyfriend's parents are willing to take her for a weekend a month, sometimes more if we need it. Its nice to know we have time to get things done. See, Lily is still very attached to me. VERY attached. I recently had a friend over this weekend, Abby (with Noah and Micah), and watching Noah and how good he was at entertaining himself made me realize how clingy that Lily is. Its not necessarily a bad thing, but a pain in the butt when you are trying to get things done.
Noah will take his mom's iphone and play games on it. He'll run around like a heathen, completely ignoring us. Lily....well, Lily needs mommy or daddy. Pretty constantly. She's getting better at it when it comes to watching Dora, but that's about it. She rarely plays on her own, she needs us to play with her. When she's eating, most mealtimes end with pleas for hugs and washing her hands. She doesn't like to go to bed on her own. We generally only get little 5 minute snatches throughout the day of Lily not needing us for something. Luckily, we both love playing with her.
We're hopefully moving this weekend, and getting a dog not long after that. I'm looking forward to having the dog. I think a dog is vastly different from a cat, and Lily will hopefully fall in love with it and be able to spend more time with it and leaving us to get things done.
We're looking at getting a boxer pup. It seems to be one of the best breeds for children. We're going to do everything possible to make sure Lily and the dog develop a strong bond. We already know we're going to end up taking the dog out on like six walks a day. At my boyfriend's house, she LOVES taking their dog on a walk.
I think a dog will be a welcome part of the family very easily. Not to mention I just plain out like dogs better. I love Posey, but I don't like him very much half the time! Haha.
I am so, so blessed that Lily has found that magic number with her medicine. That she's doing so much better. I love that I can 'race' her for a half block or so. That, even though it drives me nuts at times, she's always wanting to go to the playground. That she wants to be outside and playing. (Yay for a fenced in backyard where mommy can sit on the porch occasionally and let Lily run around safely in the grass!) She already has a tricycle. We're looking to get her a little slide because she adores the slides at the playgrounds. She'll have a big room to herself that we can set up to be the ultimate indoor play area. Not to mention the three season room on the back where she can play even when its raining.
My daughter is the light of my life, and I'm so glad things seem to be going in a direction where I can truly give her a good life. =)
Friday, August 12, 2011
Growing, growing, growing
 | |||||||||||||||||||||||||||
| For when your two-year-old must wear exactly what she wants to wear. |
I believe the picture above pretty much personifies Lily. She's a little crazy, a little bold, very feisty, and determined to live her life as best she can.
I got bad news a few nights ago when Lily's pulse-ox levels dropped to 90 and below when she was sleeping. We thought she'd been doing so well. Apparently, that is not the case. At least not at night.
Then, today, I take her to the hospital for her Nutritionist appointment. They are not happy because Lily lost 1/4 of a pound. Apparently if she'd been a healthy baby, they'd be perfectly happy with where she is right now, but because we had to do supplements and a high-calorie diet to get her to this point...removing the supplements and seeing a minor weight loss is enough to send them into a tizzy.
So, I got a lot of suggestions from the Nutritionist, and Lily will now be following (as much as possible) a diet made for children with Cystic Fibrosis. Apparently children with CF require a very high calorie diet too. If your child needs a high calorie diet, please check out this kid's health site. It is very awesome, and where my Nutritionist got the recipes that she gave me.
It was very frustrating, because it feels like her weight is a much larger issue than it needs to be. I am trying to understand - because I know it is a big issue to be addressed - but its just irritating. I have enough to worry about with Lily's health problems - and weight doesn't really seem like it needs to be one of them. I mean, she's in size 3T shirts, and 2T pants now! Size 5 shoe. She's 34.5 inches tall, and weighs 26 lb 13 oz. She's 50th percentile in weight for length. She's GOOD.
However, I will add it to my worry list, and do every thing I need to do to keep her weight up. Its not like I'd starve her anyways. It just means extra calories in everything.
Even though I think the dr was wrong about the impetigo, I will say that the ointment is REALLY helping Lily's feeding tube site. It is, however, doing nada for the spots on her bum.
Go figure.
Do you have a child with a terminal illness and/or special needs? Let me know your blog site, and we can follow eachother!
Tuesday, August 9, 2011
Diagnosis: Impetigo .. and a "my-mare"
So, I had to take Lily to the Pedi tonight to get her feeding tube site checked out. The doctor (who annoyed the crap out of me) looked at it for a moment, and then at some red spots on her bum, and pronounced it to be impetigo.
I think the doctor is full of crap. My understanding of impetigo is it is contagious, and it causes a bad rash. Lily has 4 spots on her bum, and her feeding tube site is irritated...and its been unchanging for the past week. That doesn't sound like a bad rash. Considering Kyle and I also change her diapers, and we haven't had any sign of it... I call bullshit. However, I will faithfully apply the ointment and see if it helps.
The doctor was this younger guy who had one of the most annoying voices, and looked like he didn't have 2 braincells to rub together. Plus, he kept directing his talk to Kyle. Excuse me? I'm the mother here! I'm the one talking to you.
Grrrr.
Lily woke up late last night, crying. When I went up to her and asked her what was wrong, she told me that she 'had a my-mare'. She cuddled close to me for several minutes, and when I laid her back down, she asked (In the saddest possible voice) "Mommy lay down with Lily?" It came out "Mommy yay down wif Yi-Yee?" Needless to say, Mommy closed up the downstairs, and went back up to lay down with her.
I think the doctor is full of crap. My understanding of impetigo is it is contagious, and it causes a bad rash. Lily has 4 spots on her bum, and her feeding tube site is irritated...and its been unchanging for the past week. That doesn't sound like a bad rash. Considering Kyle and I also change her diapers, and we haven't had any sign of it... I call bullshit. However, I will faithfully apply the ointment and see if it helps.
The doctor was this younger guy who had one of the most annoying voices, and looked like he didn't have 2 braincells to rub together. Plus, he kept directing his talk to Kyle. Excuse me? I'm the mother here! I'm the one talking to you.
Grrrr.
Lily woke up late last night, crying. When I went up to her and asked her what was wrong, she told me that she 'had a my-mare'. She cuddled close to me for several minutes, and when I laid her back down, she asked (In the saddest possible voice) "Mommy lay down with Lily?" It came out "Mommy yay down wif Yi-Yee?" Needless to say, Mommy closed up the downstairs, and went back up to lay down with her.
Monday, August 8, 2011
Would be Typical, but...
So the oxygen company had to come out to do a spot-check on Lily today. I thought that was all it was. I go home though, and there's this itty-bitty pulse ox that she has to wear tonight, all night. Have you ever tried to keep something on a child's hand during the night? HAH. Its too big and weirdly shaped on her finger for me to be able to tape it to her.
I came home from work, and she greeted me at the door. Unfortunately, I couldn't pick her up and give her loves because I was on my monthly phone call with the Accredo pharmacy to reorder her Tracleer. Even if you are having the best possible day, just having to order that medication can put you down in the dumps. The reps are really nice, but it just brings to mind her health problems all over again.
Then I learn that we have to do this pulse ox monitoring all night. Blah.
Anyways, we did go to Marino's Fish and Chips restaurant. Their french fries are freaking awesome! Lily absolutely loved them. It was so odd. She didn't want to sit on my lap like she normally does. She wanted her 'chur, please.' So, we put her in a high chair, and gave her a little bowl of noodles, along with some pieces of shrimp, french fries, etc. It was so weird to watch her successfully feeding herself. Just one of those moments when you look at your child and realize how quickly they are growing up
After dinner, when we came home, she wanted to go on a walk. With me. Not with daddy. With me. She made that VERY clear. Part way through the walk, she saw some gnats flying around her, and absolutely freaked out. I had to pick her up, and every time I tried to put her down, she tried her best to climb right back up me. Needless to say, that walk didn't last very long. Which, actually, was a good thing, considering I didn't want to walk in the first place.
Also, and yeah - I'm biased, I had one of those moments where I looked at Lily and thought again how pretty she was. Now, I'm the first one to admit she was an ugly baby...and she still has her days where she looks like a little jewel-belly troll, but I'm fine with that. I really hope she turns out as pretty as I'm thinking she will.
Then again, its not like she has a huge chance of living to be old enough to worry about her looks anyways, so what does it matter?
Sorry, that was the grump in me.
She also tried to read the Sleep Book to us tonight. SO cute!
I came home from work, and she greeted me at the door. Unfortunately, I couldn't pick her up and give her loves because I was on my monthly phone call with the Accredo pharmacy to reorder her Tracleer. Even if you are having the best possible day, just having to order that medication can put you down in the dumps. The reps are really nice, but it just brings to mind her health problems all over again.
Then I learn that we have to do this pulse ox monitoring all night. Blah.
Anyways, we did go to Marino's Fish and Chips restaurant. Their french fries are freaking awesome! Lily absolutely loved them. It was so odd. She didn't want to sit on my lap like she normally does. She wanted her 'chur, please.' So, we put her in a high chair, and gave her a little bowl of noodles, along with some pieces of shrimp, french fries, etc. It was so weird to watch her successfully feeding herself. Just one of those moments when you look at your child and realize how quickly they are growing up
After dinner, when we came home, she wanted to go on a walk. With me. Not with daddy. With me. She made that VERY clear. Part way through the walk, she saw some gnats flying around her, and absolutely freaked out. I had to pick her up, and every time I tried to put her down, she tried her best to climb right back up me. Needless to say, that walk didn't last very long. Which, actually, was a good thing, considering I didn't want to walk in the first place.
Also, and yeah - I'm biased, I had one of those moments where I looked at Lily and thought again how pretty she was. Now, I'm the first one to admit she was an ugly baby...and she still has her days where she looks like a little jewel-belly troll, but I'm fine with that. I really hope she turns out as pretty as I'm thinking she will.
Then again, its not like she has a huge chance of living to be old enough to worry about her looks anyways, so what does it matter?
Sorry, that was the grump in me.
She also tried to read the Sleep Book to us tonight. SO cute!
Saturday, August 6, 2011
Typical
Today was a Typical day. By that I mean this was one of those days where Lily's illness did not intrude at all. I felt like she was a Typical 2 year old. Annoying, bratty, loveable, smart-mouthed, affectionate...
When I went to pick her up today, she immediately ran towards me with a "That's mommy! Hi mommy!" When we were ready to go, she demanded "Pee-shur" (Pediasure) in her cup, and asked where daddy was.
By the time we were in the car, I'd already assured her four times that she could have Pediasure as soon as we got home, and yes she would see Daddy. Yes, she would see Posey...and yes, Mommy was driving Daddy's car.
When I took her to the store with me (after she graciously consented that we could 'see store' before we saw Daddy), it was an exercise in patience. When we stepped inside the first set of doors, and crossed to get a cart, the fan that they had running blew her hair back a bit. "Owwww..." There was no way it hurt. It took a second to figure out she was saying oww about. As soon as we got inside the store proper, it was "Can-nee? Can-nee?" Yes, Lily, we can get candy. In the candy aisle, when asked what candy she wanted to get - "Can-nee, take a bite!" Thank you, Lily, you were utterly unhelpful.
We got candy. She wanted a piece. I must have repeated fifteen times that she could have a piece as soon as we got home. We start to head towards the fruits and veg section. "Apples? Apple? Apple pie?" WTH? Where'd she get this apple pie thing from? And then it was back to wanting a piece of the candy again. I don't mind buying her candy. I probably give her more candy than I should. I dare anyone to say anything about it though. She's sick, so she can have candy if she freaking wants it. My child, my rules. Don't like it? There's a cliff. Go jump. Without a parachute.
Now, that's not to say I don't have any rules with her, or that she gets her way all the time. She most certainly does not. In fact, I'd say she only gets her way about half of the time.
We're in the check-out lane, and she's progressed to fussing about the candy. Cue me dramatically saying "Oh my god. End of the world. You aren't getting your candy right this second. Call children services, someone, I'm obviously neglecting my toddler!" .... Now I know where Lily gets her penchant for Drama. Me. Distraction time - I give her my debit card and my store card to play with while I'm talking with the cashier. Lily stares at the debit card. "Money? P'astic?" Yes, Lily, that's mommy's debit card.
We make it home. I ask her to help me carry some groceries in. Well, the groceries made it okay - just barely. The bag itself was almost ripped to shreds by the time she got it to the steps. When I went back for a second load, it was "Mommy - Come back here! NO MOMMY! NO! Come back here!" Trying to explain that I was just going for the rest of the groceries was an exercise in futility.
Fast forward a bit - I'm hot, sticky, and miserable. I ask Lily if she wants to take a bath with me. Cue Lily starting to strip right in the middle of the living room, and going for the stairs instantly. "Take a baff? Take a baff?" Yep, we'll take a bath right this second, I guess.
Lily hates for me to wash my hair. I don't quite understand why, but if I don't talk to her the entire time I'm washing my hair, reassuring her that I"m okay - she freaks out.
Dora? Dora? Doraboots? Doraboots and Sesame Street? Noodles?
Ok, night-night fan. Night-night mommy.
...and quiet falls.
I love days like today.
When I went to pick her up today, she immediately ran towards me with a "That's mommy! Hi mommy!" When we were ready to go, she demanded "Pee-shur" (Pediasure) in her cup, and asked where daddy was.
By the time we were in the car, I'd already assured her four times that she could have Pediasure as soon as we got home, and yes she would see Daddy. Yes, she would see Posey...and yes, Mommy was driving Daddy's car.
When I took her to the store with me (after she graciously consented that we could 'see store' before we saw Daddy), it was an exercise in patience. When we stepped inside the first set of doors, and crossed to get a cart, the fan that they had running blew her hair back a bit. "Owwww..." There was no way it hurt. It took a second to figure out she was saying oww about. As soon as we got inside the store proper, it was "Can-nee? Can-nee?" Yes, Lily, we can get candy. In the candy aisle, when asked what candy she wanted to get - "Can-nee, take a bite!" Thank you, Lily, you were utterly unhelpful.
We got candy. She wanted a piece. I must have repeated fifteen times that she could have a piece as soon as we got home. We start to head towards the fruits and veg section. "Apples? Apple? Apple pie?" WTH? Where'd she get this apple pie thing from? And then it was back to wanting a piece of the candy again. I don't mind buying her candy. I probably give her more candy than I should. I dare anyone to say anything about it though. She's sick, so she can have candy if she freaking wants it. My child, my rules. Don't like it? There's a cliff. Go jump. Without a parachute.
Now, that's not to say I don't have any rules with her, or that she gets her way all the time. She most certainly does not. In fact, I'd say she only gets her way about half of the time.
We're in the check-out lane, and she's progressed to fussing about the candy. Cue me dramatically saying "Oh my god. End of the world. You aren't getting your candy right this second. Call children services, someone, I'm obviously neglecting my toddler!" .... Now I know where Lily gets her penchant for Drama. Me. Distraction time - I give her my debit card and my store card to play with while I'm talking with the cashier. Lily stares at the debit card. "Money? P'astic?" Yes, Lily, that's mommy's debit card.
We make it home. I ask her to help me carry some groceries in. Well, the groceries made it okay - just barely. The bag itself was almost ripped to shreds by the time she got it to the steps. When I went back for a second load, it was "Mommy - Come back here! NO MOMMY! NO! Come back here!" Trying to explain that I was just going for the rest of the groceries was an exercise in futility.
Fast forward a bit - I'm hot, sticky, and miserable. I ask Lily if she wants to take a bath with me. Cue Lily starting to strip right in the middle of the living room, and going for the stairs instantly. "Take a baff? Take a baff?" Yep, we'll take a bath right this second, I guess.
Lily hates for me to wash my hair. I don't quite understand why, but if I don't talk to her the entire time I'm washing my hair, reassuring her that I"m okay - she freaks out.
Dora? Dora? Doraboots? Doraboots and Sesame Street? Noodles?
Ok, night-night fan. Night-night mommy.
...and quiet falls.
I love days like today.
Saturday, July 30, 2011
7 months later...
I didn't realize it had been so long since I had updated this...
Lily is doing great. She really is. For the first time since birth, she's on the growth chart. 43rd percentile, to be specific, for weight. 15th percentile for height. 85th percentile for head size. So, basically, she's short and has a huge head,but her weight is okay!
We're transitioning her from pediasure to regular whole-milk.
She is talking so much now. Her favorite phrase of the moment is "Come back here!" She hates it when you get more than a few feet away from her. She's also fond of saying "Wow, that was close!" She's obsessed with the camera now - I guess all my picture taking has rubbed off. Just recently she put a hat on her head and demanded that I 'take a pit-chur'. So I did, and she happily cheesed at me.
She goes in for surgery on Tuesday. Its just to repair her belly button. Nothing major =) Just finally fixing the droopy belly button. To be honest, I"ll kind of miss it. Her belly button has character. It looks like a smile. However, its because of herniation, so it definitely needs to be fixed.
We are so lucky that Lily is doing well. So many other PH kids are not.
Angel - 3 years old - On day 13 of recovery after having open heart surgery. She's not doing well. If there isn't some major improvement soon, her parents might have to make a very hard decision.
Riley - 4 years old - is now going to be placed on the transplant list.
Please keep these two in your prayers.
Lily is doing great. She really is. For the first time since birth, she's on the growth chart. 43rd percentile, to be specific, for weight. 15th percentile for height. 85th percentile for head size. So, basically, she's short and has a huge head,but her weight is okay!
We're transitioning her from pediasure to regular whole-milk.
She is talking so much now. Her favorite phrase of the moment is "Come back here!" She hates it when you get more than a few feet away from her. She's also fond of saying "Wow, that was close!" She's obsessed with the camera now - I guess all my picture taking has rubbed off. Just recently she put a hat on her head and demanded that I 'take a pit-chur'. So I did, and she happily cheesed at me.
She goes in for surgery on Tuesday. Its just to repair her belly button. Nothing major =) Just finally fixing the droopy belly button. To be honest, I"ll kind of miss it. Her belly button has character. It looks like a smile. However, its because of herniation, so it definitely needs to be fixed.
We are so lucky that Lily is doing well. So many other PH kids are not.
Angel - 3 years old - On day 13 of recovery after having open heart surgery. She's not doing well. If there isn't some major improvement soon, her parents might have to make a very hard decision.
Riley - 4 years old - is now going to be placed on the transplant list.
Please keep these two in your prayers.
Tuesday, December 28, 2010
In progress.
Ok, so I've currently got a call in to the Pulmonologist. Waiting for a second call back.
I noticed last night when Lily was laying down to have her diaper changed that the area around her mouth was blue. She had been fine sitting up. I've noticed blue appearing more and more lately.
Some of the people I know have tried to tell me that blue is going to happen when people have the problem that Lily has. I'm not convinced. Turning blue is never normal, and Lily is turning blue more and more recently. Now, there's some question in my mind as to if I'm just *noticing* it more, but I don't necessarily think that's the case.
Anyways, so the pulmonologist's nurse just called me back, and asked if Lily has a SAT monitor. Said that would be handy to have. So, I can see us getting one soon. Thank goodness for Medicaid. Anyways, the nurse said that he would probably want to see her, and we would see what we needed to do.
Sort of having flashbacks of the pulmonologist talking about having to go in and move the blood vessels off of Lily's bronchus. Blegh.
However, I think I will take a 'simple' problem like her bronchus being collapsed if it means her PH is not getting better. Its sort of the best of the worst scenario thing.
ARGH! Frick-a-frack-a-som-a-beech!
Anyways, the waiting game resumes again. I want the doctor to call me back like NOW. You know?
I'll edit this particular blog post as I find out more.
I noticed last night when Lily was laying down to have her diaper changed that the area around her mouth was blue. She had been fine sitting up. I've noticed blue appearing more and more lately.
Some of the people I know have tried to tell me that blue is going to happen when people have the problem that Lily has. I'm not convinced. Turning blue is never normal, and Lily is turning blue more and more recently. Now, there's some question in my mind as to if I'm just *noticing* it more, but I don't necessarily think that's the case.
Anyways, so the pulmonologist's nurse just called me back, and asked if Lily has a SAT monitor. Said that would be handy to have. So, I can see us getting one soon. Thank goodness for Medicaid. Anyways, the nurse said that he would probably want to see her, and we would see what we needed to do.
Sort of having flashbacks of the pulmonologist talking about having to go in and move the blood vessels off of Lily's bronchus. Blegh.
However, I think I will take a 'simple' problem like her bronchus being collapsed if it means her PH is not getting better. Its sort of the best of the worst scenario thing.
ARGH! Frick-a-frack-a-som-a-beech!
Anyways, the waiting game resumes again. I want the doctor to call me back like NOW. You know?
I'll edit this particular blog post as I find out more.
Thursday, December 23, 2010
Christmas, Bible-Thumpers, and Non-Believers
I was thinking on this while driving to work this morning, and needed to get it out of my head...
Now, I call myself a Christian. I do this because I believe in God. I believe Jesus was the son of God. I believe He died to save us from our sins.
What I am NOT is a bible-thumper. I'm familiar with the Bible. I've read it cover to cover. However, its been a while since I've even opened one. Its been several years since I've even been to church.
So, now that I've established that... let me just say...
Some people need to SHUT UP. I was reading various posts on Christmas, Jesus, etc...and non-believers were taking great joy in pointing out that December 25 was a pagan holiday long before Christ was 'supposedly' born. That we didn't know what we were talking about, etc. Of course, others were coming back at them and (I'll admit it, basically getting their butts handed to them) saying that yes, it was. That December 25 was the day he was born, and yadda yadda yadda.
My response to this is: I don't care what date he was born on. I'm celebrating his BIRTH. I'm not celebrating the day he was born. He could have been born on January 3rd for all I know, but, guess what? I'm going to celebrate his birth on December 25th. Why? Partly because that's how I was raised, but mostly because I realize that its the thought that counts.
Jesus could have been born on December 25th. Maybe God looked down, wanted to ease people's way into believing in him, and decided that that day would be the day Jesus was born. If you believe in the Bible, you believe in the Virgin birth. God knocked up a chick who had never had sex. You think he couldn't point a finger and go "Be born today" ??
On a side note, I can't believe I just put "God knocked up a chick". LOL! Well, you guys knew what I meant.
They talked about the pine tree, and how it had been a pagan symbol too. Something that people had gathered around in worship of life, or something like that. Well, gee, and the problem with us continuing to have a Christmas tree is.......?? I have a Christmas tree. I don't worshp it/ around it. Its a very pretty fake tree that I hang shiny baubles on so Lily can look and go "wow!" and it gives me a reason to torment the cat with the a water gun. To me, while the Christmas tree is a part of the holiday season, it is not something that I link with the birth of God's son. Its what we put gifts under, and hang shinies on. I celebrate Jesus' birth on Dec. 25th. I'm putting up the tree, however, for my personal pleasure. Not as on offering to Him.
For Him: I sing Carols like Silent Night, and I feel the joy and peace reverberate through me. For Him, I'll hold my daughter on my lap, and finally open the bible again. I'll read to her the story of Christ's birth. For Him, I'll give her snuggles, and thank Him for blessing me with her.
For me (and the family): I'll put up the shiny christmas tree. I'll buy presents to make people smile. I'll cook food so that we have a nice family dinner together.
There's a big difference between the stuff I'll do for Him and for me. I might do them on the same day, but there is still a big difference there.
And,you know what? I'll admit that maybe I'm doing it the wrong way. However, its the thought that counts.
I also, for the record, believe that we are in the End Times. Doesn't mean I'm going to shove it down your throat, but there it is.
So: Have yourselves a merry Christmas, everyone. To the people who take great joy in trying to rip other people's beliefs to shreds: Have yourself a merry Christmas, and grow the heck up. Asshats.
We all have our own beliefs. Deal with it. If you want to give yourself a happy right now, I'll give you some of my daughter's viagra. Same result, less annoyances to deal with.
Now, I call myself a Christian. I do this because I believe in God. I believe Jesus was the son of God. I believe He died to save us from our sins.
What I am NOT is a bible-thumper. I'm familiar with the Bible. I've read it cover to cover. However, its been a while since I've even opened one. Its been several years since I've even been to church.
So, now that I've established that... let me just say...
Some people need to SHUT UP. I was reading various posts on Christmas, Jesus, etc...and non-believers were taking great joy in pointing out that December 25 was a pagan holiday long before Christ was 'supposedly' born. That we didn't know what we were talking about, etc. Of course, others were coming back at them and (I'll admit it, basically getting their butts handed to them) saying that yes, it was. That December 25 was the day he was born, and yadda yadda yadda.
My response to this is: I don't care what date he was born on. I'm celebrating his BIRTH. I'm not celebrating the day he was born. He could have been born on January 3rd for all I know, but, guess what? I'm going to celebrate his birth on December 25th. Why? Partly because that's how I was raised, but mostly because I realize that its the thought that counts.
Jesus could have been born on December 25th. Maybe God looked down, wanted to ease people's way into believing in him, and decided that that day would be the day Jesus was born. If you believe in the Bible, you believe in the Virgin birth. God knocked up a chick who had never had sex. You think he couldn't point a finger and go "Be born today" ??
On a side note, I can't believe I just put "God knocked up a chick". LOL! Well, you guys knew what I meant.
They talked about the pine tree, and how it had been a pagan symbol too. Something that people had gathered around in worship of life, or something like that. Well, gee, and the problem with us continuing to have a Christmas tree is.......?? I have a Christmas tree. I don't worshp it/ around it. Its a very pretty fake tree that I hang shiny baubles on so Lily can look and go "wow!" and it gives me a reason to torment the cat with the a water gun. To me, while the Christmas tree is a part of the holiday season, it is not something that I link with the birth of God's son. Its what we put gifts under, and hang shinies on. I celebrate Jesus' birth on Dec. 25th. I'm putting up the tree, however, for my personal pleasure. Not as on offering to Him.
For Him: I sing Carols like Silent Night, and I feel the joy and peace reverberate through me. For Him, I'll hold my daughter on my lap, and finally open the bible again. I'll read to her the story of Christ's birth. For Him, I'll give her snuggles, and thank Him for blessing me with her.
For me (and the family): I'll put up the shiny christmas tree. I'll buy presents to make people smile. I'll cook food so that we have a nice family dinner together.
There's a big difference between the stuff I'll do for Him and for me. I might do them on the same day, but there is still a big difference there.
And,you know what? I'll admit that maybe I'm doing it the wrong way. However, its the thought that counts.
I also, for the record, believe that we are in the End Times. Doesn't mean I'm going to shove it down your throat, but there it is.
So: Have yourselves a merry Christmas, everyone. To the people who take great joy in trying to rip other people's beliefs to shreds: Have yourself a merry Christmas, and grow the heck up. Asshats.
We all have our own beliefs. Deal with it. If you want to give yourself a happy right now, I'll give you some of my daughter's viagra. Same result, less annoyances to deal with.
Tuesday, December 21, 2010
Stand up
Its a bad day today. I don't know even how to explain it. Its just a bad, bad day emotionally. I think I am still feeling the stress of Lily being sick. I think I will always feel that stress, just some days I'm better at dealing with it than others.
My boyfriend texted me yesterday morning, and asked what Lily's Tracleer dosage was. I told him. He texted back that he thought that was what he had given her last night, but he's so cloudy from being sick. We've been giving the medication to her for a month. It irritated me, and worried me. It feels like the point is driving home more and more that I need to find a way to stay home and take care of Lily.
I don't want to. Its selfish of me, but I don't feel like I'm cut out to be a stay at home mom. I need that time away from her. I love her to death, but I need a break from her sometimes. I don't know how I'm supposed to do this. how I'm supposed to keep handling this.
Sometimes I wonder why I even try. Its not like anything I can dno can make Lily better. I know why I try, though. I try because I love her, and that will never change. I will always do my best to take care of her. Its just that my best obviously isn't good enough.
I'm not good enough.
I feel like I'm failing at all parts of my life right now. I couldn't produce a healthy baby, I can't produce enough energy to care about my job. I can't be the type of friend that I should be to my friends - I just don't have the energy. Its hard for me to even clean the house.
I've always battled depression, and this is definitely a down-swing for me. I fight it off as much as I can, but it seems like things are just getting too much to handle. Don't worry. I'm not suicidal. I would never leave Lily like that. I justdon't know what to do anymore.
I can feel myself disconnecting from people. Conversations are forced because I know I need to talk to people.
One of my friends made a post about how the squeaky wheel gets the oil, and another friend posted but sometimes people get tired of hearing about the squeaky wheel. I wondered if they were talking about me. I know I talk alot about Lily's problems, and how bad things are right now. Maybe I should stop that. They might not have been referring to me, but that's immediately what popped into my head.
Maybe I have been leaning on people too much lately. It seems like I've always done best when I had no one to depend upon but myself. Maybe I need to start that again. I don't know.
At one point I held hope that life would get better. That I would get through all the crap that life has thrown my way, and come out on top somehow. That's obviously never going to happen. Things are never going to get better.
I can pretend they are. I can try to fool myself. I can laugh and smile and make raunchy jokes, and feel better for a few minutes. That's all.
I wish I was a better person. I wish the idea of staying at home with Lily didn't fill me with dread. That's a horrible thing to admit, but there it is. I'm not perfect and I will admit to it. If I need to stay home with her, I will. I'll probably have to go on medication to help keep me level again, but I will.
Things looked up for a few days when I heard Lily got approved for her medicaid. That was a blessing. That still is a blessing. Its just not enough right now.
I don't really even have the desire to drink much anymore. A beer every now and then is nice, but I realize that its too tempting. That with everything going on, it would be really easy to turn into the type of person I don't want to be.
I remember commenting to one of my friends that it was a fact of life that bad people got whatever they wanted, and good people get kicked while they are down. I have to wonder what good people get from life then. I guess its only seeing how many times you can stand back up after you've been knocked down.
I wish I could take Lily's sicknes upon myself. I wish I could give her a better, stable life. I can't though. So I'll just have to teach her how to deal with it, and hwo to start standing back up. That is, if she doesn't die on me. Can't forget about that.
Now that's one thing I probably won't be able to stand back up after.
My boyfriend texted me yesterday morning, and asked what Lily's Tracleer dosage was. I told him. He texted back that he thought that was what he had given her last night, but he's so cloudy from being sick. We've been giving the medication to her for a month. It irritated me, and worried me. It feels like the point is driving home more and more that I need to find a way to stay home and take care of Lily.
I don't want to. Its selfish of me, but I don't feel like I'm cut out to be a stay at home mom. I need that time away from her. I love her to death, but I need a break from her sometimes. I don't know how I'm supposed to do this. how I'm supposed to keep handling this.
Sometimes I wonder why I even try. Its not like anything I can dno can make Lily better. I know why I try, though. I try because I love her, and that will never change. I will always do my best to take care of her. Its just that my best obviously isn't good enough.
I'm not good enough.
I feel like I'm failing at all parts of my life right now. I couldn't produce a healthy baby, I can't produce enough energy to care about my job. I can't be the type of friend that I should be to my friends - I just don't have the energy. Its hard for me to even clean the house.
I've always battled depression, and this is definitely a down-swing for me. I fight it off as much as I can, but it seems like things are just getting too much to handle. Don't worry. I'm not suicidal. I would never leave Lily like that. I justdon't know what to do anymore.
I can feel myself disconnecting from people. Conversations are forced because I know I need to talk to people.
One of my friends made a post about how the squeaky wheel gets the oil, and another friend posted but sometimes people get tired of hearing about the squeaky wheel. I wondered if they were talking about me. I know I talk alot about Lily's problems, and how bad things are right now. Maybe I should stop that. They might not have been referring to me, but that's immediately what popped into my head.
Maybe I have been leaning on people too much lately. It seems like I've always done best when I had no one to depend upon but myself. Maybe I need to start that again. I don't know.
At one point I held hope that life would get better. That I would get through all the crap that life has thrown my way, and come out on top somehow. That's obviously never going to happen. Things are never going to get better.
I can pretend they are. I can try to fool myself. I can laugh and smile and make raunchy jokes, and feel better for a few minutes. That's all.
I wish I was a better person. I wish the idea of staying at home with Lily didn't fill me with dread. That's a horrible thing to admit, but there it is. I'm not perfect and I will admit to it. If I need to stay home with her, I will. I'll probably have to go on medication to help keep me level again, but I will.
Things looked up for a few days when I heard Lily got approved for her medicaid. That was a blessing. That still is a blessing. Its just not enough right now.
I don't really even have the desire to drink much anymore. A beer every now and then is nice, but I realize that its too tempting. That with everything going on, it would be really easy to turn into the type of person I don't want to be.
I remember commenting to one of my friends that it was a fact of life that bad people got whatever they wanted, and good people get kicked while they are down. I have to wonder what good people get from life then. I guess its only seeing how many times you can stand back up after you've been knocked down.
I wish I could take Lily's sicknes upon myself. I wish I could give her a better, stable life. I can't though. So I'll just have to teach her how to deal with it, and hwo to start standing back up. That is, if she doesn't die on me. Can't forget about that.
Now that's one thing I probably won't be able to stand back up after.
Monday, December 20, 2010
A cure...
What would happen if there was a cure for ?
Its something that I've been thinking about since reading the article about AIDS having been cured. (It was not cured. There was ONE man who, under special circumstances, is HIV-free (seemingly) right now.)
What would happen if there was a cure for any terrible disease? Would this cure be mass-produced and distributed at large to people who needed it? Hah! If you think so, I admire your rosey outlook on society in general. Well, partially admire it. Mostly think you're a optimistic idiot. No large drug company is going to be that kind.
They will recognize that people suffering from will pay anything / do anything to be cured. The price will be enormously high (Need I remind you one of Lily's meds is 5000 dollars a bottle?), and demand will far outweigh supply.
Charity programs will be set up so that pharmaceutical companies can trumpet their kindness for all the world to hear about. qualifications to get into these programs will be insanely hard to reach.
You'd see headlines about people dying from the disease because they couldn't afford the cure. About people dying because they didn't get the cure in time...the disease was too advanced.
Then, maybe 15-20 years down the road, prices will finally be driven down a bit. Deals will be reached. The medicine will be more accessible. Maybe then, will be mostly cured. However, until humans in general can let loose of their greed, and self-serving interests, that terrible disease will only be cured for select groups. The rest will be in a figurative lottery to get the few free doses that sporadically come up for grabs.
------
Okay, that was random and didn't have a ton of coherency, but that's what happens when I have a beer in me sometimes.
-------
Lily is with Kyle at his parents house. Momma has cheesy horror movies and a 6-pack of beer.
-------
Its something that I've been thinking about since reading the article about AIDS having been cured. (It was not cured. There was ONE man who, under special circumstances, is HIV-free (seemingly) right now.)
What would happen if there was a cure for any terrible disease? Would this cure be mass-produced and distributed at large to people who needed it? Hah! If you think so, I admire your rosey outlook on society in general. Well, partially admire it. Mostly think you're a optimistic idiot. No large drug company is going to be that kind.
They will recognize that people suffering from
Charity programs will be set up so that pharmaceutical companies can trumpet their kindness for all the world to hear about. qualifications to get into these programs will be insanely hard to reach.
You'd see headlines about people dying from the disease because they couldn't afford the cure. About people dying because they didn't get the cure in time...the disease was too advanced.
Then, maybe 15-20 years down the road, prices will finally be driven down a bit. Deals will be reached. The medicine will be more accessible. Maybe then,
------
Okay, that was random and didn't have a ton of coherency, but that's what happens when I have a beer in me sometimes.
-------
Lily is with Kyle at his parents house. Momma has cheesy horror movies and a 6-pack of beer.
-------
Thursday, December 16, 2010
I...am.
I believe every post I've done has been specifically about Lily or her problems and dealing with them- and that's great. That's primarily what this is meant for. However, in this post I'm going to ramble a bit, I think.
I asked on FB today - "Remember when we were actual people, mommas?" I love my daughter to pieces, but I feel like I've lost a good portion of my identity to her. That's not necessarily a bad thing, its just something to reflect upon.
Even when she is at someone's house, I still think about her. I think I can't get shitfaced because she might need me. I call to check on her. I'm so exhausted generally that I don't want to go out and party or something. I just want to take a long bath, read a good book, and go to sleep.
I can't remember the last indepth conversation I had that didn't involve her. I used to know Arabic. I don't remember anything more than the basic greeting now. Its amazing the things that I'm not anymore. So I'm going to amuse myself and list what I still am.
1. I am an avid reader. (Baby or no baby, I need to at least read a couple chapters every day.)
2. I am opinionated.
3. If I were a jewel, I'd be a diamond. I'm ridiculously strong, and yet just hit me the right way/with the right thing, and I'll shatter into a thousand pieces.
4. I am a dreamer. When I'm laying in bed at night, I dream about what it would be like to be loved. What it would be like to be special. What it would be like to be something more than I am.
5. I am a potty-mouth. You have seen evidence of it. The F word is probably my favorite, but I have a triple-threat that I pull out when I'm really frustrated. Sh**! *stomps foot* F***! *stomps foot again* D***! *slams hands down on nearest surface* When I get to that point, people are generally backing away from me.
6. I am a believer in God. I have my issues with him. I hate him sometimes. I love him others. However, no matter how I feel about it, I believe that He exists.
7. I am a dog-lover, and a cat-hater. Well, I hate all the friendly cats. I like the aloof ones who only love you for your food.
8. I am someone who cares too much about things, but shows that I care too little. Defense Mechanism.
9. I am intelligent. Half my brain-power is on Lily right now, but I've intimidated more than a few people intellectually.
10. I am a sex fiend. I'm often too tired to do anything about it, but I love me some raunchy sex!
However, you know, none of those is as important as this one...
11. I am a mother.
My daughter is my present, and my future. The past is behind me. No point in dwelling on it. I've got enough to do just dealing with the present, and running from the future.
Oh, yeah..
12. I am sleepy.
I asked on FB today - "Remember when we were actual people, mommas?" I love my daughter to pieces, but I feel like I've lost a good portion of my identity to her. That's not necessarily a bad thing, its just something to reflect upon.
Even when she is at someone's house, I still think about her. I think I can't get shitfaced because she might need me. I call to check on her. I'm so exhausted generally that I don't want to go out and party or something. I just want to take a long bath, read a good book, and go to sleep.
I can't remember the last indepth conversation I had that didn't involve her. I used to know Arabic. I don't remember anything more than the basic greeting now. Its amazing the things that I'm not anymore. So I'm going to amuse myself and list what I still am.
1. I am an avid reader. (Baby or no baby, I need to at least read a couple chapters every day.)
2. I am opinionated.
3. If I were a jewel, I'd be a diamond. I'm ridiculously strong, and yet just hit me the right way/with the right thing, and I'll shatter into a thousand pieces.
4. I am a dreamer. When I'm laying in bed at night, I dream about what it would be like to be loved. What it would be like to be special. What it would be like to be something more than I am.
5. I am a potty-mouth. You have seen evidence of it. The F word is probably my favorite, but I have a triple-threat that I pull out when I'm really frustrated. Sh**! *stomps foot* F***! *stomps foot again* D***! *slams hands down on nearest surface* When I get to that point, people are generally backing away from me.
6. I am a believer in God. I have my issues with him. I hate him sometimes. I love him others. However, no matter how I feel about it, I believe that He exists.
7. I am a dog-lover, and a cat-hater. Well, I hate all the friendly cats. I like the aloof ones who only love you for your food.
8. I am someone who cares too much about things, but shows that I care too little. Defense Mechanism.
9. I am intelligent. Half my brain-power is on Lily right now, but I've intimidated more than a few people intellectually.
10. I am a sex fiend. I'm often too tired to do anything about it, but I love me some raunchy sex!
However, you know, none of those is as important as this one...
11. I am a mother.
My daughter is my present, and my future. The past is behind me. No point in dwelling on it. I've got enough to do just dealing with the present, and running from the future.
Oh, yeah..
12. I am sleepy.
Wednesday, December 15, 2010
Good news at last!
Well, as you all probably know, I've been struggling trying to get Lily medical coverage. It has been a huge worry! Medical bills have been piling up around my ears!
Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.
Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.
Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.
Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"
The answers were "Yes. November 1st. Its ongoing."
Thank you Lord! thank you thank you thank you thank you thank you!!
I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...
To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.
Again, Thank God!
So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).
Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.
Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.
Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.
So, pardon me while I go do a booty-shake.
Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.
Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.
Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.
Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"
The answers were "Yes. November 1st. Its ongoing."
Thank you Lord! thank you thank you thank you thank you thank you!!
I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...
To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.
Again, Thank God!
So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).
Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.
Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.
Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.
So, pardon me while I go do a booty-shake.
Thursday, December 9, 2010
Saying all the wrong things / Thank you for the Memory
There are certain things I'm told when someone finds out that my daughter has a chronic illness that drive me up the freakin' walls. I know people are trying to be reassuring/encouraging, but there are some things you just don't say. At least to me. Everyone is different, so I'll speak for myself only here.
Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.
"You gotta stay positive."
No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.
"Well, they are coming out with new treatments for stuff all the time."
No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.
"Maybe she'll grow out of it."
If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.
What you CAN say:
"Dude, that freaking sucks!"
This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'
"I'll pray for her."
This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.
"Sorry to hear that."
Its simple, honest, and conveys understanding of the situation.
I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
-------------
A memory:
I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.
I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes". She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.
Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"
"No."
"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.
"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."
"Cookie!" As I started to say no again, the babysitter spoke up.
"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.
The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.
Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.
All throughout the day as that memory has randomly popped into my head, I have at least snickered.
Thank you, Lily, for the memory.
Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.
"You gotta stay positive."
No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.
"Well, they are coming out with new treatments for stuff all the time."
No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.
"Maybe she'll grow out of it."
If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.
What you CAN say:
"Dude, that freaking sucks!"
This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'
"I'll pray for her."
This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.
"Sorry to hear that."
Its simple, honest, and conveys understanding of the situation.
I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
-------------
A memory:
I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.
I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes". She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.
Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"
"No."
"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.
"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."
"Cookie!" As I started to say no again, the babysitter spoke up.
"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.
The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.
Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.
All throughout the day as that memory has randomly popped into my head, I have at least snickered.
Thank you, Lily, for the memory.
Wednesday, December 8, 2010
Randomn Stuffs
I recently had to disconnect myself from a board full of people that I really cared about. I had to do it because I couldn't take it anymore. I couldn't take being around conversations about healthy babies. I couldn't take listening to people talk about how hard a time they were having because of their child having a cold, or chronic ear infections, or various other little things. I felt for them, I still feel for them, but I was getting to the point where I was wanting to scream at them.
I wanted to scream: SHUT UP! JUST STOP WHINGING! You have NO clue what hard is until you've had a baby with a chronic life-threatening illness. NO clue! You think ear infections are bad? Constant diaper rashes? Waking up all hours of the night still? Try looking at your baby and realizing that they could die any time on you. Try looking at your baby and realizing that the odds are AGAINST him/her even getting a chance to GROW UP.
I wanted to scream and cry. To throw things and slap people. Just from listening to their happy conversations. Just from listening to their very valid concerns/complaints. For those mamas who are coming to the board for support because they are having a rough time, I had to leave. I had to leave because I no longer had it in me to offer them the support that they needed. I had to be selfish, because I cannot be unselfish right now. I just don't have it in me. I care for all of them, and that's why I left. Because I knew, sooner or later, I was going to come out with a very hurtful rant...and I wouldn't even be able to say truthfully that I didn't mean what I said afterwards, because I would mean it. I would not be saying it to be mean or to be spiteful, but because its the truth.
That they don't realize how good they have it.
I worry about the other children who have health problems. A couple have heart problems, but thankfully they don't seem to be anything too serious. I know one mama's baby also has some type of thyroid problems. They are in my thoughts quite often. No baby should be sick. Ever. Also, there is the momma of the beautiful little girl with Autism. She seems to be handling it like a champ. I will always try to be there for her too.
......
I am so thankful for one particular friend. This girl is absolutely amazing. She's made bracelets and encouraged others to make bracelets for the Global Genes Project. She asks every day how I'm doing, how Lily's doing. She has done research on her own to find out more about Pulmonary Hypertension. She sent me a card one day recently that had me in stitches because it was so funny. She's willing to listen to me whine and grumble about how much life sucks right now. She is, in two words, F'king Awesome! I gladly give up my self-proclaimed title to this particular friend. Because that's what she is.
She wishes she could do more. She's doing so much right now. I don't even have the right words in me to express how thankful I am for her friendship.
I'm also thankful for the other mamas (and some dads) who pm me out of the blue just to see how things are going. I can't always respond to them because my day is that rough, but I feel better just knowing that they care.
-------
I'm pretty much constantly tired lately. I have trouble getting up enough energy to really play with Lily. I feel like I just want to sit on the couch and be left alone. I feel like of my immediate relations (Friends/family/coworkers) here in Columbus, I'm the only one who realizes how serious Lily's condition is. I'm the only one who is really watching out for changes in her condition. I won't say I'm the only one that cares, because I know I'm not...but I feel like I'm taking on all the worry without anyone here to share it with. Sometimes all I need is a hug from someone who gets it. I don't feel like I have that.
I've been grumpy lately. More inclined to anger easily. My 'fuse' is practically non-existant.
I really just want babied for a few days. Just cuddles, snuggles, chocolate, alcohol, and a big box of tissues to blow my nose on while I left myself break down and cry. Tangible things. Oh well. More's the pity.
---------
Oh yeah... I got laid last night. It was good.
I wanted to scream: SHUT UP! JUST STOP WHINGING! You have NO clue what hard is until you've had a baby with a chronic life-threatening illness. NO clue! You think ear infections are bad? Constant diaper rashes? Waking up all hours of the night still? Try looking at your baby and realizing that they could die any time on you. Try looking at your baby and realizing that the odds are AGAINST him/her even getting a chance to GROW UP.
I wanted to scream and cry. To throw things and slap people. Just from listening to their happy conversations. Just from listening to their very valid concerns/complaints. For those mamas who are coming to the board for support because they are having a rough time, I had to leave. I had to leave because I no longer had it in me to offer them the support that they needed. I had to be selfish, because I cannot be unselfish right now. I just don't have it in me. I care for all of them, and that's why I left. Because I knew, sooner or later, I was going to come out with a very hurtful rant...and I wouldn't even be able to say truthfully that I didn't mean what I said afterwards, because I would mean it. I would not be saying it to be mean or to be spiteful, but because its the truth.
That they don't realize how good they have it.
I worry about the other children who have health problems. A couple have heart problems, but thankfully they don't seem to be anything too serious. I know one mama's baby also has some type of thyroid problems. They are in my thoughts quite often. No baby should be sick. Ever. Also, there is the momma of the beautiful little girl with Autism. She seems to be handling it like a champ. I will always try to be there for her too.
......
I am so thankful for one particular friend. This girl is absolutely amazing. She's made bracelets and encouraged others to make bracelets for the Global Genes Project. She asks every day how I'm doing, how Lily's doing. She has done research on her own to find out more about Pulmonary Hypertension. She sent me a card one day recently that had me in stitches because it was so funny. She's willing to listen to me whine and grumble about how much life sucks right now. She is, in two words, F'king Awesome! I gladly give up my self-proclaimed title to this particular friend. Because that's what she is.
She wishes she could do more. She's doing so much right now. I don't even have the right words in me to express how thankful I am for her friendship.
I'm also thankful for the other mamas (and some dads) who pm me out of the blue just to see how things are going. I can't always respond to them because my day is that rough, but I feel better just knowing that they care.
-------
I'm pretty much constantly tired lately. I have trouble getting up enough energy to really play with Lily. I feel like I just want to sit on the couch and be left alone. I feel like of my immediate relations (Friends/family/coworkers) here in Columbus, I'm the only one who realizes how serious Lily's condition is. I'm the only one who is really watching out for changes in her condition. I won't say I'm the only one that cares, because I know I'm not...but I feel like I'm taking on all the worry without anyone here to share it with. Sometimes all I need is a hug from someone who gets it. I don't feel like I have that.
I've been grumpy lately. More inclined to anger easily. My 'fuse' is practically non-existant.
I really just want babied for a few days. Just cuddles, snuggles, chocolate, alcohol, and a big box of tissues to blow my nose on while I left myself break down and cry. Tangible things. Oh well. More's the pity.
---------
Oh yeah... I got laid last night. It was good.
Monday, December 6, 2010
Turning Blue
Last night, I laid Lily down on the floor for tickles. She flushed as soon as I laid her down, but it didn't really even register in my mind. Then I tickled her. Now, I know Lily has problems breathing, so I keep tickles very brief. I generally tickle for a bit, then let her catch her breath, and do it again.
This time when I tickled her (15-20 secs, max) and pulled my hands away...Lily was blue. Flushed red, and blue around the lips, temples.. I didn't freak out immediately because she was okay after I sat her up. Today I placed a call to the doctor...
The nurse's reaction that took my call was "Oh, my god." You NEVER want to hear that from a nurse. Ever. Anyways, she transferred me to another nurse, the one who works right under Dr. Daniels, and that nurse (Jennie) asked me a whole buncha questions, and said she'd call me back.
The results of the call back are we have to try oxygen 24/7 and see if that helps. If it doesn't, we have to put in a call to her pulmonologist. Its possible that Lily's left bronchus collapsed even further. If its not that, then its her PH.
I can't take much more of this. I really can't.
This time when I tickled her (15-20 secs, max) and pulled my hands away...Lily was blue. Flushed red, and blue around the lips, temples.. I didn't freak out immediately because she was okay after I sat her up. Today I placed a call to the doctor...
The nurse's reaction that took my call was "Oh, my god." You NEVER want to hear that from a nurse. Ever. Anyways, she transferred me to another nurse, the one who works right under Dr. Daniels, and that nurse (Jennie) asked me a whole buncha questions, and said she'd call me back.
The results of the call back are we have to try oxygen 24/7 and see if that helps. If it doesn't, we have to put in a call to her pulmonologist. Its possible that Lily's left bronchus collapsed even further. If its not that, then its her PH.
I can't take much more of this. I really can't.
Thursday, December 2, 2010
Just to hear you say that you love me...
I'd go and capture the moon
That's what I would do
Just to hear you say that you love me..
Just to hear you say that you love me..
-Fatih Hill, Tim McGraw
She was playing beside the computer, periodically looking over to see what I was doing. Occasionally, she was pressing buttons she wasn't supposed to touch, and she knew it. I had turned on music at dinner time, just to keep us entertained while we were eating, and left it playing afterwards.
There had been a few fun songs come on, and I'd laughed as she'd bopped her red-head to the beat, and wiggled her non-existant butt. For the most part though, I was wrapped up in what I was doing. Then, Faith Hill and Tim McGraw singing "Just to hear you say that you love me." came on. I peeked at her, just to see her reaching (yet again) to touch the power button on my computer.
"You little booger!" I exclaimed, and rose from the couch to snatch her up from what she was about to do. She squealed, and I moved us to the center of the floor. I took one of her tiny hands in mine, and began to rock back and forth to the song, occasionally singing along under my breath. She grinned, her gray eyes sparkling, and tried to move to the beat too. A few seconds later, the chorus sounded, and on the word "love", I laid her back in my arms a bit, and spun her around.
Giggles erupted. The word came again. Her cheeks were flushed with color, and she was clutching my hand with all her strength as we went around another time.
I pulled her back up as a verse began, and she looked at me for a second, then leaned forward and carefully wrapped her arms around my neck, and laid her head on my shoulder. Suddenly, I was nearly a boneless pile of goo. This was, I knew, one of those perfect moments that needed to be written down. I would do it later. Right now, though, I was going to enjoy every second of it.
I held her close, a hand on her back, and slow-danced carefully with her. This lasted for a good bit of the song. Then, my red-headed heathen, in all her glory, looked lovingly up at me, and reach out a hand to my face. With the greatest concentration, and barely a twitch of her lips to betray her intentions, she closed her fist around one edge of my glasses, and took them off my face.
"Oh, you think you're funny? Is that it? You think you funny?!" I cradled her to my body, and spun us in circles as I playfully tried to retrieve my glasses. She laughed as I repeated "Gimme! Gimme! Gimme!" It was on. I suddenly hefted her higher in my arms, and began to gently nip at her sides. As peals of laughter sounded, and she squirmed to get away, I stole my glasses back.
It wasn't much longer after that when we sat down, and the song ended. However, that particular memory that we made stuck with me the entire night, and I knew that today it needed to be written down. I'd written too much sad stuff lately. It was time for a happy.
That's what I would do
Just to hear you say that you love me..
Just to hear you say that you love me..
-Fatih Hill, Tim McGraw
She was playing beside the computer, periodically looking over to see what I was doing. Occasionally, she was pressing buttons she wasn't supposed to touch, and she knew it. I had turned on music at dinner time, just to keep us entertained while we were eating, and left it playing afterwards.
There had been a few fun songs come on, and I'd laughed as she'd bopped her red-head to the beat, and wiggled her non-existant butt. For the most part though, I was wrapped up in what I was doing. Then, Faith Hill and Tim McGraw singing "Just to hear you say that you love me." came on. I peeked at her, just to see her reaching (yet again) to touch the power button on my computer.
"You little booger!" I exclaimed, and rose from the couch to snatch her up from what she was about to do. She squealed, and I moved us to the center of the floor. I took one of her tiny hands in mine, and began to rock back and forth to the song, occasionally singing along under my breath. She grinned, her gray eyes sparkling, and tried to move to the beat too. A few seconds later, the chorus sounded, and on the word "love", I laid her back in my arms a bit, and spun her around.
Giggles erupted. The word came again. Her cheeks were flushed with color, and she was clutching my hand with all her strength as we went around another time.
I pulled her back up as a verse began, and she looked at me for a second, then leaned forward and carefully wrapped her arms around my neck, and laid her head on my shoulder. Suddenly, I was nearly a boneless pile of goo. This was, I knew, one of those perfect moments that needed to be written down. I would do it later. Right now, though, I was going to enjoy every second of it.
I held her close, a hand on her back, and slow-danced carefully with her. This lasted for a good bit of the song. Then, my red-headed heathen, in all her glory, looked lovingly up at me, and reach out a hand to my face. With the greatest concentration, and barely a twitch of her lips to betray her intentions, she closed her fist around one edge of my glasses, and took them off my face.
"Oh, you think you're funny? Is that it? You think you funny?!" I cradled her to my body, and spun us in circles as I playfully tried to retrieve my glasses. She laughed as I repeated "Gimme! Gimme! Gimme!" It was on. I suddenly hefted her higher in my arms, and began to gently nip at her sides. As peals of laughter sounded, and she squirmed to get away, I stole my glasses back.
It wasn't much longer after that when we sat down, and the song ended. However, that particular memory that we made stuck with me the entire night, and I knew that today it needed to be written down. I'd written too much sad stuff lately. It was time for a happy.
Tuesday, November 30, 2010
Being Thankful and Remembering Cora
The main part of yesterday was a horrible day for me. I had tears in my eyes quite often. I just couldn't get Lily's situation out of my head. I was sad. I was mad. I was wondering why everyone around me seems to have healthy babies, and MY baby has problem after problem.
I blamed myself. I still blame myself. I could have done things differently, or something.
I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.
However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.
Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!
I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.
When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.
When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.
(((This is Noah and Lily. They are 3 days apart. They had a very long playsession on Sunday)))
When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.
Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...
Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.
For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.
My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.
Its amazing how much someone who can barely talk can touch so many people.
Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.
I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.
---
Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'. Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.
---
One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.
Now, dammit, I gotta go, cause I've got tears racing down my cheeks.
---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!
I blamed myself. I still blame myself. I could have done things differently, or something.
I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.
However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.
Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!
I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.
When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.
When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.
When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.
Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...
Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.
For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.
My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.
Its amazing how much someone who can barely talk can touch so many people.
Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.
I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.
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Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'. Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.
---
One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.
Now, dammit, I gotta go, cause I've got tears racing down my cheeks.
---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!
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