http://www.inspirationthroughart.org/meet-our-heroes/
A few of my favorites:
Saturday, May 26, 2012
My Beautiful Babes
Recently I applied for and was granted a photo shoot through a program called Inspiration Through Art. This non profit is comprised of a network of photographers who generously donate their time to provide families of kids with life altering illnesses the opportunity to capture their children in pictures. Our photographer Cathy did an amazing job and even captured a rare smile. We are so grateful for her time and the amazing photographs of our beautiful 2 year olds. Our story will eventually be loaded to the Inspiration through Art website, but there are some cuties out there right now, so check it out:
http://www.inspirationthroughart.org/meet-our-heroes/
A few of my favorites:
http://www.inspirationthroughart.org/meet-our-heroes/
A few of my favorites:
Thursday, May 24, 2012
Remind me next time
We had out follow-up appointment with the orthopedic surgeon this afternoon. She looks great. Her incisions are healing nicely, she has good range of motion. She is still having pain but we no longer have to keep her dosed on tylenol continuously. We see her again in 6 months. As she was making her way to the door she asked how things were going. And I could tell she was really asking how things were going but sort of only asking because she has learned something about bedside manner since her residency. I made some off hand comment about the vomit, but explained it away as 'that just seems to be how she handles stress'. And then we left. She tells parents every day that these procedures are minor, the recovery is no big deal, there will be minimal pain. She doesn't spend the days and nights after surgery in their rooms. She doesn't go home with these kids. Here is what I should have said:
There is no such thing as minor. Mya cannot handle minor. She has a limited awareness of the world around her and when you introduce stress, that is all she sees. She cannot handle pain. She screams, and sobs, and holds her breath until you can't bear it any more because you know that the sound will soon escape and it will pierce you. At first she will sleep and you will be grateful, but the weeks ahead will be marked by sleepless nights. She won't hold her food and you will be cleaning up formula and wondering how much medication actually stayed down. You will wake to the sound of gagging and thank the stars it woke you. You will be exhausted. And it won't even be about you. So next time, and that might be the hardest part, knowing there will be a next time, I will fight you. You better have hard evidence that the outcome will bring comfort, comfort that outweighs the pain. And you better not say minor.
There is no such thing as minor. Mya cannot handle minor. She has a limited awareness of the world around her and when you introduce stress, that is all she sees. She cannot handle pain. She screams, and sobs, and holds her breath until you can't bear it any more because you know that the sound will soon escape and it will pierce you. At first she will sleep and you will be grateful, but the weeks ahead will be marked by sleepless nights. She won't hold her food and you will be cleaning up formula and wondering how much medication actually stayed down. You will wake to the sound of gagging and thank the stars it woke you. You will be exhausted. And it won't even be about you. So next time, and that might be the hardest part, knowing there will be a next time, I will fight you. You better have hard evidence that the outcome will bring comfort, comfort that outweighs the pain. And you better not say minor.
Sunday, May 20, 2012
and this is probably gross
We have this little system worked out. It is called HEEELLLLP! When I scream that it means I am corralling bodily fluid right now (usually vomit, but not always) so please grab the nearest washable items and get it over here. Stat. Last night I held regurgitated vanilla Ketocal in the palm of my hand, and my lap, and in Mya's lap. But most importantly, not a drop hit the sofa. The system, it works. Parenthood is awesome. I feel like I am training for something. Not sure what. This skill must be somehow marketable.
Clayton has started kissing his own boo-boos. It is pretty cute. If you don't respond quickly enough, he just takes care of himself. Not sure if that reflects somehow on my parenting skills. Does that mean I am neglectful or teaching independence? In my defense I think we don't always agree as to what constitutes a boo-boo. Tell me what hurts buddy. Hmm, you can't remember can you? I am going to guess hand, toe or knee. It's become like the closest man solves the crises around here. The other day Clayton kissed Ella's knee for her. Last night Ella stepped in to soothe and pat away Mya's tears. I think the next step is to teach them to toss a blanket when I yell for help. Catching vomit should probably remain a lesson for a much later date.
Clayton has started kissing his own boo-boos. It is pretty cute. If you don't respond quickly enough, he just takes care of himself. Not sure if that reflects somehow on my parenting skills. Does that mean I am neglectful or teaching independence? In my defense I think we don't always agree as to what constitutes a boo-boo. Tell me what hurts buddy. Hmm, you can't remember can you? I am going to guess hand, toe or knee. It's become like the closest man solves the crises around here. The other day Clayton kissed Ella's knee for her. Last night Ella stepped in to soothe and pat away Mya's tears. I think the next step is to teach them to toss a blanket when I yell for help. Catching vomit should probably remain a lesson for a much later date.
Friday, May 18, 2012
So glad you asked, but let's just forget about Mars for a little while
There seem to be a lot of those 'never to say' articles circling the web these days. Things you should never say to a mother of multiples, or a special needs parent, or a person battling an illness. And don't get me wrong, they are usually spot on because without a doubt there are a few catch phrases that will come off the tongues of the majority of the population and more often than not they catch you at the wrong time and make you feel just a little more vulnerable. But sometimes these articles leave me thinking: what are people supposed to talk to me about? I want people to talk to me, right? So unless I am standing in the parking lot outside of some sort of seminar on sensitivity or in a group of my peers or with my closest friends who know my story already, if we talk long enough, people are probably going to say the 'wrong thing'. So let me answer your questions. And let me thank you for asking because I know that it is usually because you actually care, not because you are trying to make me uncomfortable.
Are they natural/when did you know/do triplets run in your family/were you surprised: First of all these are all really the same question, you just might not realize it if you have never battled infertility. We tried for years and were eventually handed a diagnosis that meant that 'natural' was just not going to happen. Okay, maybe it might have happened once in the next 100 years (so let's say year 50 on average), but seeing as there are not a whole lot of 79 year old pregnant ladies walking around we decided not to wait on that eventuality. And oh yes, there are even fewer 129 year old pregnant ladies and we wanted more than one child. At some point you have to make a decision and stop praying for a miracle and realize that God gave you resources that sometimes are just as good as miracles and I could talk at length about this one, but to the point: we have more than one child because we transferred more than one embryo. But we did not transfer 3, so yes, I guess that means they are natural. We knew right away, because that is how it works when you do IVF. You get bloodwork around 4 or 5 weeks (off the charts by the way- we think you are having twins!) and then an ultrasound at 6 weeks. Triplets don't run in anyone's family to be honest. There does tend to be a gene that encourages women to drop 2 eggs resulting in fraternal twins. People think it 'skips a generation' because if the dad has that gene he can't drop 2 eggs, but he can pass the gene on to his daughter. If your husband was a twin, relax; your odds are the same as the rest of the population. Identical twinning is not linked to genetics. And yes there is evidence that the IVF process increases the likelihood of identical twinning, but it takes it from something like 2 in 1000 to 3 in 100. So yes, pretty surprised.
Will she ever walk/talk/run/fly: Judging by Mya's current development and my limited knowledge of what areas or the brain control that sort of thing and the amount of brain matter, or lack of, that she has in those areas, I would have to guess not. Sometimes I feel like that question is a little bit like asking the parent of a 13 year old who is failing math and science if their child will one day pilot a ship to Mars. While it is possible that he or she will choose astrophysics as a specialty and reach the top of the field, odds are, probably not. And to be honest, all this parent really cares about at this point is keeping their kid from repeating the 7th grade so Mars is the furthest thing from their radar. More importantly, there are some really great things developmentally that Mya is doing and that I hope for her to do in the future and I especially like when this line of questioning leads there and doesn't fizzle into an awkward silence after I start talking about Martians. I don't mind talking about my daughter's challenges. In fact, I love educating people through her. So please don't be afraid to ask. People talk about what they know, and walking and talking are the norm. I get that. I do know that sitting independently is a precursor to walking. We are nowhere near that. I also know that kids that are making strides toward crawling by the age of 2 have the potential to get there. We are not. And that is okay.
Will she always have seizures and are they really that big of a deal: There is no cure for epilepsy (although a case might be made for a kid that responds to the ketogenic diet). It is also not as visible (read: well funded) as some other diseases in the world today and they are pretty much treating it in the same way they have been for decades. There are people with epilepsy who can control it through medication or diet for years, but the potential will always be there. Mya has a particularly difficult to control form. She also has a brain that doesn't look like the brains that were used to test and develop these drugs and she isn't responding to the diets that have been shown to be effective for some in the ways they would expect. And this makes sense because she pretty much responds to nothing like they would expect. The odds are not stacked in her favor. We think her seizure disorder might be evolving into a new and equally undesirable form as she grows. A fellow IS/keto mom posted this link earlier today. I thought I would share, not only because it does a good job of explaining the diet but also of explaining the kind of impact seizures can have on a kid. And this kid was developing normally before seizure onset. They are a really big deal.
Ketogenic Diet: Fatty Food or Cure for Epilepsy
So anyhoo. That's my story, but ask away. Or you could comment on her phenomenal hair or fantastic new stroller. That would be okay too.
Are they natural/when did you know/do triplets run in your family/were you surprised: First of all these are all really the same question, you just might not realize it if you have never battled infertility. We tried for years and were eventually handed a diagnosis that meant that 'natural' was just not going to happen. Okay, maybe it might have happened once in the next 100 years (so let's say year 50 on average), but seeing as there are not a whole lot of 79 year old pregnant ladies walking around we decided not to wait on that eventuality. And oh yes, there are even fewer 129 year old pregnant ladies and we wanted more than one child. At some point you have to make a decision and stop praying for a miracle and realize that God gave you resources that sometimes are just as good as miracles and I could talk at length about this one, but to the point: we have more than one child because we transferred more than one embryo. But we did not transfer 3, so yes, I guess that means they are natural. We knew right away, because that is how it works when you do IVF. You get bloodwork around 4 or 5 weeks (off the charts by the way- we think you are having twins!) and then an ultrasound at 6 weeks. Triplets don't run in anyone's family to be honest. There does tend to be a gene that encourages women to drop 2 eggs resulting in fraternal twins. People think it 'skips a generation' because if the dad has that gene he can't drop 2 eggs, but he can pass the gene on to his daughter. If your husband was a twin, relax; your odds are the same as the rest of the population. Identical twinning is not linked to genetics. And yes there is evidence that the IVF process increases the likelihood of identical twinning, but it takes it from something like 2 in 1000 to 3 in 100. So yes, pretty surprised.
Will she ever walk/talk/run/fly: Judging by Mya's current development and my limited knowledge of what areas or the brain control that sort of thing and the amount of brain matter, or lack of, that she has in those areas, I would have to guess not. Sometimes I feel like that question is a little bit like asking the parent of a 13 year old who is failing math and science if their child will one day pilot a ship to Mars. While it is possible that he or she will choose astrophysics as a specialty and reach the top of the field, odds are, probably not. And to be honest, all this parent really cares about at this point is keeping their kid from repeating the 7th grade so Mars is the furthest thing from their radar. More importantly, there are some really great things developmentally that Mya is doing and that I hope for her to do in the future and I especially like when this line of questioning leads there and doesn't fizzle into an awkward silence after I start talking about Martians. I don't mind talking about my daughter's challenges. In fact, I love educating people through her. So please don't be afraid to ask. People talk about what they know, and walking and talking are the norm. I get that. I do know that sitting independently is a precursor to walking. We are nowhere near that. I also know that kids that are making strides toward crawling by the age of 2 have the potential to get there. We are not. And that is okay.
Will she always have seizures and are they really that big of a deal: There is no cure for epilepsy (although a case might be made for a kid that responds to the ketogenic diet). It is also not as visible (read: well funded) as some other diseases in the world today and they are pretty much treating it in the same way they have been for decades. There are people with epilepsy who can control it through medication or diet for years, but the potential will always be there. Mya has a particularly difficult to control form. She also has a brain that doesn't look like the brains that were used to test and develop these drugs and she isn't responding to the diets that have been shown to be effective for some in the ways they would expect. And this makes sense because she pretty much responds to nothing like they would expect. The odds are not stacked in her favor. We think her seizure disorder might be evolving into a new and equally undesirable form as she grows. A fellow IS/keto mom posted this link earlier today. I thought I would share, not only because it does a good job of explaining the diet but also of explaining the kind of impact seizures can have on a kid. And this kid was developing normally before seizure onset. They are a really big deal.
Ketogenic Diet: Fatty Food or Cure for Epilepsy
So anyhoo. That's my story, but ask away. Or you could comment on her phenomenal hair or fantastic new stroller. That would be okay too.
Monday, May 14, 2012
Mother's Day Blessings
Happy 'its after Mother's Day but I am going to write about it anyway' all. The highlights:
We all woke up in the same house. This was a bit of a question mark in the wee hours of Saturday morning when Mya's O2 sats dropped into the 70s repeatedly as they were trying to work her off oxygen. They kinda freak out around 88. After about the 4th time I told the nurse she looked completely normal we just shut off the monitor. No harm done. Miss Mya is just the picture of oxygen usage efficiency I guess.
Clayton ate my breakfast. Well I got half of my toast and a few bites of sausage.
I recruited a few more gardeners to assist with my new square foot garden. Let's just say the carrots are sufficiently watered.
I went on one of the shortest nature walks in history with 2 of my favorite people. We saw a train, yellow flowers, the river, stepped in front of some bicyclists and then decided we wanted to be carried. And we're done.
After throwing baby to the ground repeatedly to see if she bounces like Clayton's rubber ball (she does not), Ella strapped her safely in the stroller and took her for a spin around the living room. Such a good mommy.
Mya and I watched last week's Private Practice while daddy went to the grocery store and the crazies rested up for the evening.
We entertained the patrons at Chili's. Ella was not fooled when we failed to order her french fries with her kids meal. She just munched on chips to hold herself over until daddy's arrived and then quite literally stuffed her face. I think the count was up to 6 at a time at one point. We also learned Clayton does not like salsa but he will eat guacamole.
And finally, I had a couple little people fight over who got to have mommy carry them to bed.
Happy Mothers Day.
We all woke up in the same house. This was a bit of a question mark in the wee hours of Saturday morning when Mya's O2 sats dropped into the 70s repeatedly as they were trying to work her off oxygen. They kinda freak out around 88. After about the 4th time I told the nurse she looked completely normal we just shut off the monitor. No harm done. Miss Mya is just the picture of oxygen usage efficiency I guess.
Clayton ate my breakfast. Well I got half of my toast and a few bites of sausage.
I recruited a few more gardeners to assist with my new square foot garden. Let's just say the carrots are sufficiently watered.
I went on one of the shortest nature walks in history with 2 of my favorite people. We saw a train, yellow flowers, the river, stepped in front of some bicyclists and then decided we wanted to be carried. And we're done.
After throwing baby to the ground repeatedly to see if she bounces like Clayton's rubber ball (she does not), Ella strapped her safely in the stroller and took her for a spin around the living room. Such a good mommy.
Mya and I watched last week's Private Practice while daddy went to the grocery store and the crazies rested up for the evening.
We entertained the patrons at Chili's. Ella was not fooled when we failed to order her french fries with her kids meal. She just munched on chips to hold herself over until daddy's arrived and then quite literally stuffed her face. I think the count was up to 6 at a time at one point. We also learned Clayton does not like salsa but he will eat guacamole.
And finally, I had a couple little people fight over who got to have mommy carry them to bed.
Happy Mothers Day.
Friday, May 11, 2012
So far so okay
Well they could probably do a little better job inspiring confidence in this place. When you say 'we also have her down for a hamstring release' and I say 'wait that's the first we have heard this, could you tell me about the hamstring' I am not asking for you to explain to me what the hamstring is. I have actually heard of that muscle before. What I am wondering why you didn't tell me this before we had her in a gown. Yes I would like to speak to the surgeon before surgery. Especially as it seems we are adding procedures at will. When you say she will go in at 7:15 and then change the time to 9 to ensure both surgeons will be free I kind of wonder why this wasn't considered BEFORE we had to wake her at 4 am to get her medicines in on time. Oh wait you can actually do her now, you worked a little bit of charm. Well great. So anyway, apparently the sh*t was gotten together. All parties involved were informed of all procedures. We established the correct pronunciation of little miss's name and confirmed her birth date the appropriate number of times.
In all the day has gone about as best as could be expected. Surgery went well. Her eyes are straight, or will be, and red. She has the flexibility of a 2-year old in her hips (well, when asleep) and they did not need to touch her hamstrings, so no anatomy lesson was necessary. Bernie laid down the law to get us to the neurology floor rather than the orthopedics floor where they most certainly would have screwed up her diet and freaked about her seizures. We witnessed a bit of a tussle between the recovery nurse and the nurse on the floor in the hand-off. We were siding with the floor nurse and for the record you can totally get a Bair Hugger warmer wherever you are in the hospital, not just in the ICU. Let's try not to send the kid into hypothermia to get that one figured out. She struggled with holding her temp for a bit so we still have the warmer going, she's still fighting to keep her oxygen saturation up but we kind of think what she is doing is completely normal for her; its just not something we monitor at home. I think she is feeling pretty rotten when she is awake, but that hasn't been too often today. So the challenges for the night nurse will be to keep her pumped with pain meds before they wear off, wean her off oxygen and the warmer, and turn off the darn pulse ox so they will stop keeping record of her low readings and let us go home in the morning. I sense a battle with a doctor in my future. I also sense an evening with a child reaching the end of the effects of anesthesia who will realize she slept for an entire day. And this room does not have the little mini bendy TV deal, so the relaxation station is not an option.
In all the day has gone about as best as could be expected. Surgery went well. Her eyes are straight, or will be, and red. She has the flexibility of a 2-year old in her hips (well, when asleep) and they did not need to touch her hamstrings, so no anatomy lesson was necessary. Bernie laid down the law to get us to the neurology floor rather than the orthopedics floor where they most certainly would have screwed up her diet and freaked about her seizures. We witnessed a bit of a tussle between the recovery nurse and the nurse on the floor in the hand-off. We were siding with the floor nurse and for the record you can totally get a Bair Hugger warmer wherever you are in the hospital, not just in the ICU. Let's try not to send the kid into hypothermia to get that one figured out. She struggled with holding her temp for a bit so we still have the warmer going, she's still fighting to keep her oxygen saturation up but we kind of think what she is doing is completely normal for her; its just not something we monitor at home. I think she is feeling pretty rotten when she is awake, but that hasn't been too often today. So the challenges for the night nurse will be to keep her pumped with pain meds before they wear off, wean her off oxygen and the warmer, and turn off the darn pulse ox so they will stop keeping record of her low readings and let us go home in the morning. I sense a battle with a doctor in my future. I also sense an evening with a child reaching the end of the effects of anesthesia who will realize she slept for an entire day. And this room does not have the little mini bendy TV deal, so the relaxation station is not an option.
Wednesday, May 9, 2012
Huh?
Some days I feel a little like I stumbled back into freshman Spanish and la profesora refuses to speak a word of English. Okay, I caught a momma in there somewhere, but as for the rest of it...guys I have no idea what you are saying. The bagels are going night night? That can't be right. Have you ever even seen a bagel? I especially love it when they solve each others problems. I am 30 seconds into 'buddy you are just going to have to show me what you want' when Ella pops over with the shoe or the cup or the school bus with this look about her: obviously mom! At least somebody understands. That's a step in the right direction.
They are changing so fast and are beyond adorable. The other afternoon while I was changing Clayton, Ella walked over to the counter and grabbed both plates and proceeded to sit down and eat her lunch. No big deal mom, I got this. Yo Clayton, your food's over here. She's got the tune to her abc's down and A,B,W,X,Y & Z happen to be in the right spots. I am not sure what language it is she is speaking in between. She is counting to ten. It goes something like this: One, twoooooo, tree, fo, fa, SIX, numba, eiiiiiii, na, to! Clayton mastered the run and he thinks he is sneaky when he hides things behind his back. Last night while we were putting them to bed I asked for a kiss and he grabbed my face with both hands are proceeded to make out with my chin for a good 10 seconds making smoochy noises. Where did he even learn that? The wake up crib chatter is sounding more like a conversation every day and they are showing no interest in escape (thank the Lord). Mya's name is mymy. Ella's name is eye-ya. Clayton's name is...we aren't quite sure. titi maybe?
Conversations with my 26 month old maniacs
booberries. Clayton, those are strawberries. Soberries. Good job. Mo booberries pwease.
Poop? Poob! Oh, book! Got it.
Momma car ouside keeeyss!
The wheels on the bus go up and down. Up n down up n down UUUUPPPPP and down.
Pie-apple nummy. Num Num pie-apple.
They are changing so fast and are beyond adorable. The other afternoon while I was changing Clayton, Ella walked over to the counter and grabbed both plates and proceeded to sit down and eat her lunch. No big deal mom, I got this. Yo Clayton, your food's over here. She's got the tune to her abc's down and A,B,W,X,Y & Z happen to be in the right spots. I am not sure what language it is she is speaking in between. She is counting to ten. It goes something like this: One, twoooooo, tree, fo, fa, SIX, numba, eiiiiiii, na, to! Clayton mastered the run and he thinks he is sneaky when he hides things behind his back. Last night while we were putting them to bed I asked for a kiss and he grabbed my face with both hands are proceeded to make out with my chin for a good 10 seconds making smoochy noises. Where did he even learn that? The wake up crib chatter is sounding more like a conversation every day and they are showing no interest in escape (thank the Lord). Mya's name is mymy. Ella's name is eye-ya. Clayton's name is...we aren't quite sure. titi maybe?
Conversations with my 26 month old maniacs
booberries. Clayton, those are strawberries. Soberries. Good job. Mo booberries pwease.
Poop? Poob! Oh, book! Got it.
Momma car ouside keeeyss!
The wheels on the bus go up and down. Up n down up n down UUUUPPPPP and down.
Pie-apple nummy. Num Num pie-apple.
Thursday, May 3, 2012
Red Bull gives you wings
too bad I don't have any of that
I wonder if the survival of the free world depended on my accomplishing something between the hours of 8pm and 10pm if we would all be goners. No, I don't wonder at all. Sorry. There is like this secret force that sucks the energy from my body as soon as the little heads hit the little cribs so I really shouldn't be put in charge of anything that is as important as the survival of nations. I really am amazed that Bernie, Mya and I get to eat dinner daily. Who wants to put the child to bed? No takers?
I wonder if the survival of the free world depended on my accomplishing something between the hours of 8pm and 10pm if we would all be goners. No, I don't wonder at all. Sorry. There is like this secret force that sucks the energy from my body as soon as the little heads hit the little cribs so I really shouldn't be put in charge of anything that is as important as the survival of nations. I really am amazed that Bernie, Mya and I get to eat dinner daily. Who wants to put the child to bed? No takers?
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