So I'm still trying to make sense of where we're at. I don't treat my kids any different post-diagnosis than I did pre-diagnosis. Yet, it feels as if something has shifted in my understanding of my life, my children, and our future.
I have more patience with their meltdowns because I know it stems from their inability to process it all. There's more understanding when things get crazy and I have one toddler banging her head, another throwing herself backwards and bumping her head before I can catch her, and a third one just flailing and crying. It doesn't help that they pick up on one another's cues which obviously makes every meltdown an epic fail in our household.
It's challenging for me to ascertain when they're just overtired like typical kids, or melting down like typical kids, versus something more going on. Post-diagnosis, they don't get away with more, but they do get more empathy while we're in the thick of it.
I also feel curiously validated. I wasn't just imagining some of their struggles. My concerns have certainly been dismissed by our pediatrician, our friends and family. In fact, our pediatrician didn't think it was necessary to send Ada for an eval with a neurologist, but because our PT insisted, I persuaded our pediatrician to give us the referral "just to rule things out."
After we received the first diagnosis, our ped didn't call or follow up. After the 2nd and 3rd diagnosis, again, nothing. Needless to say, I have changed pediatricians.
What was just a vague but persistent idea of slight atypicalness now has a name. There were things that I noticed, and wondered about, that I now know are related to paraparesis and hemiparesis.
The head lag they had as babies. The lack of protective reflex when they fall backward. The side preferences that Julia and Emma display. Little feet turning inward when walking. Standing on tiptoes. Ada's little legs caving in under her like jelly. She doesn't lose her balance like a tree being felled, she just kind of implodes like a building being detonated. It breaks my heart for a nanosecond, until I see her pushing herself back up and marching on. Determined.
My kids get tired easily. They sleep more during the day than other kids their age, always have. It's certainly a preemie thing, but it's also a Cerebral Palsy thing. Sometimes they flail more. They bang their heads when they're frustrated. They wipe out more than other kids learning to walk.
All of this adds a little more stress, and a little more self-doubt. I am already outnumbered, but there's nothing that makes you feel like an awful parent more than your kid getting hurt. My inability to protect them from themselves is what I struggle with most.
I am usually a step ahead when it looks like they're headed towards trouble. You know, walking towards a toy that they can trip over, or headed towards a ride-on toy that can slide away from them as they try to climb on, or sticking out a hand to pull hair/poke their sister in the eye/grab their sister's nose. That kind of thing. However, the suddenness of some of their frustrations and exhaustions escalating to a head-bang on a wooden floor, or a fall backwards on a hardwoord floor... that's the stuff that scares me. Because I often can't predict it, or hold all 3 simultaneously.
It's also weird in a sense, because they are so mildly affected that most people wouldn't even know they have this diagnosis. That's both good and bad. Good, because they most likely won't be treated any differently, and will be able to live independent lives. Bad, because they may need a little help and may not get it, because people won't realize they might be physically incapable of doing something other kids take for granted.
They may struggle with scissors and writing when they're older, or have trouble playing the piano. They may trip and fall more often than other kids. Their fine motor skills may be delayed. Or not. We just don't know.
All in all, I'm finding my way back to optimism, with sprinklings of gratitude and a dash of "I can handle this" mixed in with the worst-case uncertainty. I'm still working on letting go of the guilt. Check back in about 20 years on that one.
Monday, February 28, 2011
Sunday, February 27, 2011
Speech at 16 months
Animal sounds and actions they know:
Owl - hoo hoo
Gorilla - thump chest
Sheep - baah and meh (sheep are bilingual in our household - LOL!)
Cow - mooh
Wolf - ahoooo! ahoooo!
Pig - snorts (can't say "oink" yet.) They crinkle their noses and snort - it's hysterical.
Monkey - uhuhuh, makes ASL sign for monkey
Chicken - puhk puhk puhk/flaps arms like chicken wings
Giraffe - nods yes with "long" neck
Penguin - shakes head "no" (thank you, Eric Carle book)
Buffalo - raises shoulders
Crocodile - wriggles hips, they try to say "crocodile" and it sounds
like "kohkohdai" hilarious
Dog - woof
Fish - opens and closes mouth (no sound)
Snake - ssss (they saw real snakes at a zoo recently)
Turtle - Puts finger in front of mouth for quiet and in one of their
books, the turtle is quiet
Seal - claps hands without bending arms at elbow
Elephant - stomps
Donkey - hee haw, kicks
Horse - neigh
I was busy asking Julia some of the above. I stopped before I had asked them all, and she suddently started saying and showing me the ones I had omitted! I forgot the wolf, and she said, "ahoo" and pointed to the moon, and then thumped her chest to tell me I also forgot to ask about the gorilla. Man, they're already checking up on me. This amazed me, because it was the fist time that Julia indicated to me that she was memorizing what I have and haven't asked.
This morning, Julia walked around with a little wolf soft toy, and kept saying, "ahoo, ahoo, ahoo" with pouty lips and looking up at the moon, and in an unnaturally high-pitched voice. Her wolf howls are beyond freaking adorable.
There are also other funny things they do:
If I say "Stop!" Julia and Emma will put their hands up showing "stop."
They can say, "Go" thanks to the "Go, Dogs, Go" book. It's a favorite. They also wave down imaginary traffic when we get to the green traffic light in the book, "Go, dogs, go, it's green ahead."
When we say, "Hallo, Possums!" they wave like the British comedic character, Dame Edna. We have their dad to thank for this one. Oi!!
We call "Cheerios" "O's" - and they can all sign "o" using one hand. I've been doing this for ages, but they only recently started signing this one back to us. Now they sign and say, "Ohs" simultaneously.
When we say, "Oh my goodness!" they all grab hold of their heads.
They recognize the following words and can point to these body parts, but are not attempting to say the words yet. "Nose" is about the only one they can say.
Head
Shoulders
Nose
Bellybutton
Feet
Toes
Tummy (they respond to this correctly when asked in both Afrikaans and English.)
Words they say clearly and often:
Hi
Bye
Tatta
Mamma
Pappa
Daddy
Teddy
Beer (Bear)
Doedoe (to sleep)
Baba
Ouma (grandma)
Oupa (grandpa)
Ne
Blou (blue)
Geel (yellow)
Sneeu (snow - sounds like "deeu" when they say it)
Skoen (shoe - sounds like "doen" when they pronounce it)
Op
Da (Radar, our dog)
Row
Ball and bal
Doek/doekie (Julia only)
Uh-oh
Ai (like oy vey)
Done/Klaar. In Afrikaans, it sounds like "kaa"
Ada also says "num" for yummy food (and will say "num" when she picks up the Yummy/Yucky book)
Daarsy (there you go)
Da
Mamma? (always a question, as in: "Where are you?" lol)
Pappa? (always a question)
Dadda
Ada makes sounds when she reads books, like she's reading to all of us. She's starting to make sounds like she's telling us a long story, with cadence and rhythm. It's beyond cute when she pretends to "speak" in sentences, and looks at us, like "Are you getting all that?"
Yesterday, Ada was watching her dad throw tennis balls for the dog. She made her first almost-sentence that I could comprehend, "Dadda ball woof!"
It was just incredible hearing her put those three concepts together logically.
Emma can find and point to the "ball" in the "Teddy Bear, Teddy Bear Touch the Ground" book. Anything round, is a "ball" in her world. She walks around all day long, alternating between "ball" and "woof" with "mamma" sprinkled in every now and then for dramatic effect. Julia and Emma aren't able to point to anything in particular yet when I ask them to.
Emma kisses pictures of all animate objects in books. She leans in and smacks her lips if it's an animal, human or something resembling one of those two categories, e.g. a picture of a doll. If you have eyes, you're going to be kissed! She isn't very discriminate, but doesn't kiss inanimate objects like photos of balls or pictures of cars.
Julia and Ada have started copying Emma, so now we have to stop mid-read to kiss all the animals. It's way too cute to handle.
Owl - hoo hoo
Gorilla - thump chest
Sheep - baah and meh (sheep are bilingual in our household - LOL!)
Cow - mooh
Wolf - ahoooo! ahoooo!
Pig - snorts (can't say "oink" yet.) They crinkle their noses and snort - it's hysterical.
Monkey - uhuhuh, makes ASL sign for monkey
Chicken - puhk puhk puhk/flaps arms like chicken wings
Giraffe - nods yes with "long" neck
Penguin - shakes head "no" (thank you, Eric Carle book)
Buffalo - raises shoulders
Crocodile - wriggles hips, they try to say "crocodile" and it sounds
like "kohkohdai" hilarious
Dog - woof
Fish - opens and closes mouth (no sound)
Snake - ssss (they saw real snakes at a zoo recently)
Turtle - Puts finger in front of mouth for quiet and in one of their
books, the turtle is quiet
Seal - claps hands without bending arms at elbow
Elephant - stomps
Donkey - hee haw, kicks
Horse - neigh
I was busy asking Julia some of the above. I stopped before I had asked them all, and she suddently started saying and showing me the ones I had omitted! I forgot the wolf, and she said, "ahoo" and pointed to the moon, and then thumped her chest to tell me I also forgot to ask about the gorilla. Man, they're already checking up on me. This amazed me, because it was the fist time that Julia indicated to me that she was memorizing what I have and haven't asked.
This morning, Julia walked around with a little wolf soft toy, and kept saying, "ahoo, ahoo, ahoo" with pouty lips and looking up at the moon, and in an unnaturally high-pitched voice. Her wolf howls are beyond freaking adorable.
There are also other funny things they do:
If I say "Stop!" Julia and Emma will put their hands up showing "stop."
They can say, "Go" thanks to the "Go, Dogs, Go" book. It's a favorite. They also wave down imaginary traffic when we get to the green traffic light in the book, "Go, dogs, go, it's green ahead."
When we say, "Hallo, Possums!" they wave like the British comedic character, Dame Edna. We have their dad to thank for this one. Oi!!
We call "Cheerios" "O's" - and they can all sign "o" using one hand. I've been doing this for ages, but they only recently started signing this one back to us. Now they sign and say, "Ohs" simultaneously.
When we say, "Oh my goodness!" they all grab hold of their heads.
They recognize the following words and can point to these body parts, but are not attempting to say the words yet. "Nose" is about the only one they can say.
Head
Shoulders
Nose
Bellybutton
Feet
Toes
Tummy (they respond to this correctly when asked in both Afrikaans and English.)
Words they say clearly and often:
Hi
Bye
Tatta
Mamma
Pappa
Daddy
Teddy
Beer (Bear)
Doedoe (to sleep)
Baba
Ouma (grandma)
Oupa (grandpa)
Ne
Blou (blue)
Geel (yellow)
Sneeu (snow - sounds like "deeu" when they say it)
Skoen (shoe - sounds like "doen" when they pronounce it)
Op
Da (Radar, our dog)
Row
Ball and bal
Doek/doekie (Julia only)
Uh-oh
Ai (like oy vey)
Done/Klaar. In Afrikaans, it sounds like "kaa"
Ada also says "num" for yummy food (and will say "num" when she picks up the Yummy/Yucky book)
Daarsy (there you go)
Da
Mamma? (always a question, as in: "Where are you?" lol)
Pappa? (always a question)
Dadda
Ada makes sounds when she reads books, like she's reading to all of us. She's starting to make sounds like she's telling us a long story, with cadence and rhythm. It's beyond cute when she pretends to "speak" in sentences, and looks at us, like "Are you getting all that?"
Yesterday, Ada was watching her dad throw tennis balls for the dog. She made her first almost-sentence that I could comprehend, "Dadda ball woof!"
It was just incredible hearing her put those three concepts together logically.
Emma can find and point to the "ball" in the "Teddy Bear, Teddy Bear Touch the Ground" book. Anything round, is a "ball" in her world. She walks around all day long, alternating between "ball" and "woof" with "mamma" sprinkled in every now and then for dramatic effect. Julia and Emma aren't able to point to anything in particular yet when I ask them to.
Emma kisses pictures of all animate objects in books. She leans in and smacks her lips if it's an animal, human or something resembling one of those two categories, e.g. a picture of a doll. If you have eyes, you're going to be kissed! She isn't very discriminate, but doesn't kiss inanimate objects like photos of balls or pictures of cars.
Julia and Ada have started copying Emma, so now we have to stop mid-read to kiss all the animals. It's way too cute to handle.
Thursday, February 17, 2011
Ada is walking!
Ada has figured out how to walk. She started taking steps on Feb. 10, and as of this week, she is taking about 7-10 steps at a time before plopping down. On the same day we received Julia and Emma's diagnosis, Ada took 15 steps on her own, and it was the most I've ever seen her do. It was incredible to watch and just the glimmer of hope I needed after all the recent bad news.
At one point, my dad said, "Look behind you - look who's coming your way!" and there was Ada walking over to me all by herself. With wide open, outstretched arms, I saw her last few steps before she fell into my arms, and then I realized she had walked about 4 yards total.
After that, she repeated her stunt a few times. She can't seem to get enough of this walking thing! She is one very determined child. Ada seems to be cruising more than her sisters did when they started walking. She walks along walls, holds onto furniture, and in general just wants to be upright more than she wants to crawl.
She's fast as lightning now with crawling, which has also been surprising given how many months she avoided crawling altogether. This child has surprised me at every turn. I just love seeing her progress on her own timeline, and I love her zest. She is so very different from her sisters. They tend to move in a little pack, but she often chooses to do her own thing. She flips toys over, takes them apart, investigates things, finds buttons and switches, points things out others are oblivious to, and wants to page through books herself rather than listen to me read. She is very social, makes great eye contact, smiles for the camera, and is a very bubbly and outgoing child in general, but she can also totally tune out the world and lose herself in something that interests her.
It happens more and more frequently now that Ada will be "reading" her own book, but answer whatever question I ask of Julia and Emma while we're reading a different book. Ada will be paging through a book about colors and shapes, for example, and stopping at specific pages to look rather intently at a particularly pleasing shape. Without looking up, she'll then say, "hoo hoo" in response to me asking Julia and Emma about the sound an owl makes. Ada is just seems so bored - she has to multitask! ha ha.
Physically, she seems to be getting stronger and sturdier by the day. Today she managed to bend down and pick something up before continuing her walk. She is pushing up from a quad position to standing, without holding onto other objects. Rather remarkable progress given her diagnosis.
Her legs are still pretty wobbly, but she is managing to regain her balance more often rather than falling down, which is incredibly encouraging. Given her progression until now, I wasn't expecting her to start wanting to walk for many months, but she has blown me away by walking at 15 months.
Ada has been having the toughest time with her eyeteeth coming in. Julia and Emma cut theirs ages ago, but Ada is getting them one at a time and it's been excruciatingly slow and painful. In the wee hours of Wednesday morning, I was up with all 3 kids. Julia and Emma are battling a tummy bug, but they eventually settled down again. Ada, however, would have none of it. So I pulled out duvets and pillows, and laid down beside her on the playroom foam floor.
We played like that for about 90 minutes, then she started settling down when she saw I was starting to doze off. Next thing I know, she leans over and gently gives me a kiss! Complete with smacking lips. Mwah! Totally unprompted. It was the sweetest moment ever. I still get all warm and fuzzy just thinking about how adorable that was.
She then allowed me to snuggle her, and we slept like that until daybreak. In triplet land, these precious one-on-one moments are extraordinarily hard to come by. I cherish them - even when they come at the cost of sleep.
At one point, my dad said, "Look behind you - look who's coming your way!" and there was Ada walking over to me all by herself. With wide open, outstretched arms, I saw her last few steps before she fell into my arms, and then I realized she had walked about 4 yards total.
After that, she repeated her stunt a few times. She can't seem to get enough of this walking thing! She is one very determined child. Ada seems to be cruising more than her sisters did when they started walking. She walks along walls, holds onto furniture, and in general just wants to be upright more than she wants to crawl.
She's fast as lightning now with crawling, which has also been surprising given how many months she avoided crawling altogether. This child has surprised me at every turn. I just love seeing her progress on her own timeline, and I love her zest. She is so very different from her sisters. They tend to move in a little pack, but she often chooses to do her own thing. She flips toys over, takes them apart, investigates things, finds buttons and switches, points things out others are oblivious to, and wants to page through books herself rather than listen to me read. She is very social, makes great eye contact, smiles for the camera, and is a very bubbly and outgoing child in general, but she can also totally tune out the world and lose herself in something that interests her.
It happens more and more frequently now that Ada will be "reading" her own book, but answer whatever question I ask of Julia and Emma while we're reading a different book. Ada will be paging through a book about colors and shapes, for example, and stopping at specific pages to look rather intently at a particularly pleasing shape. Without looking up, she'll then say, "hoo hoo" in response to me asking Julia and Emma about the sound an owl makes. Ada is just seems so bored - she has to multitask! ha ha.
Physically, she seems to be getting stronger and sturdier by the day. Today she managed to bend down and pick something up before continuing her walk. She is pushing up from a quad position to standing, without holding onto other objects. Rather remarkable progress given her diagnosis.
Her legs are still pretty wobbly, but she is managing to regain her balance more often rather than falling down, which is incredibly encouraging. Given her progression until now, I wasn't expecting her to start wanting to walk for many months, but she has blown me away by walking at 15 months.
Ada has been having the toughest time with her eyeteeth coming in. Julia and Emma cut theirs ages ago, but Ada is getting them one at a time and it's been excruciatingly slow and painful. In the wee hours of Wednesday morning, I was up with all 3 kids. Julia and Emma are battling a tummy bug, but they eventually settled down again. Ada, however, would have none of it. So I pulled out duvets and pillows, and laid down beside her on the playroom foam floor.
We played like that for about 90 minutes, then she started settling down when she saw I was starting to doze off. Next thing I know, she leans over and gently gives me a kiss! Complete with smacking lips. Mwah! Totally unprompted. It was the sweetest moment ever. I still get all warm and fuzzy just thinking about how adorable that was.
She then allowed me to snuggle her, and we slept like that until daybreak. In triplet land, these precious one-on-one moments are extraordinarily hard to come by. I cherish them - even when they come at the cost of sleep.
Saturday, February 12, 2011
One for all and all for one
Julia and Emma received a similar diagnosis to Ada's. All 3 of my children have mild cerebral palsy.
Those are heartbreaking, excruciating words to have to write, but I guess I have to start facing reality and this is as good a place as any to start. Today I'm grieving the life we thought we'd have, but tomorrow I'll get up and fight again.
Thank you all for letting me know you're out there, that you understand, and that you care.
Those are heartbreaking, excruciating words to have to write, but I guess I have to start facing reality and this is as good a place as any to start. Today I'm grieving the life we thought we'd have, but tomorrow I'll get up and fight again.
Thank you all for letting me know you're out there, that you understand, and that you care.
Thursday, February 10, 2011
A diagnosis nobody wants to hear
I've been holding out on sharing this, because I didn't even know where to begin.
Ada was diagnosed with mild cerebral palsy in the fall. Shockingly, she must have had a PVL (brain bleed) the neonatologists were not aware of. Yet, her cognitive function is thankfully unaffected. She is one smart little kid. Receiving this diagnosis was the hardest day of my life. And I don't say that lightly, given the many crappy days I've had the past few years with IF, Endo, HELLP, a hematoma, shingles, mastitis, etc.
It sucked the life out of me, and in many ways, I am still coming to terms with it, and will probably be processing what this truly means forever. Initially, I just sobbed for days, but had to pull my shit together to function at home and at work. I often cried on my way home from work, because it was the only time I had to myself, the only time I had to think. Probably just was well, or I would've been a train wreck, had I allowed myself to spiral into more self pity and more guilt.
Because in many ways, this is my fault. There is a higher risk of CP among triplets. Who knows what went wrong during my pregnancy, her birth, or her time in the NICU. But if we hadn't had to resort to ART, she wasn't a triplet, and I had carried her longer, this most likely would not have happened.
It took me many months to tell my closest friends. I didn't know what to say, or how they would react. I didn't want anyone treating her differently, pitying her, or worse, limiting her with what they thought she could or couldn't do.
I was already feeling utterly defeated, overwhelmed and inadequate to raise triplets, let alone a child with additional needs. I was barely coping with their PT and speech therapy, the eval appointments, and all the scheduling, that both the practical aspects and the emotional toll was just too much to comprehend.
I think anyone with multiples, and anyone with a special needs child can relate to the level of overwhelmedness one feels every day. That's a sort of crazy baseline we just all get used to and learn to deal with. It just never lets up, despite the infinite happy moments, and much fulfillment. It is a struggle to keep feeling like you're being a good parent despite the utter exhaustion and demands on your sanity. But the combination of Ada's diagnosis and having 3 teething toddlers who are still not sleeping through the night, pushed me beyond what I thought I could handle.
Yet, I am continuing to fight for her. To get her the services she needs. To work with her on each and every one of her therapy goals. And as I've had time to process the news, and as she is making strides, the diagnosis has become less painful to face.
But it is not over. Tomorrow, we head to the neurologist with Julia and Emma. Tonight, I am praying that they will be spared similar diagnoses. If you're reading this, please let me know you're out there.
Ada was diagnosed with mild cerebral palsy in the fall. Shockingly, she must have had a PVL (brain bleed) the neonatologists were not aware of. Yet, her cognitive function is thankfully unaffected. She is one smart little kid. Receiving this diagnosis was the hardest day of my life. And I don't say that lightly, given the many crappy days I've had the past few years with IF, Endo, HELLP, a hematoma, shingles, mastitis, etc.
It sucked the life out of me, and in many ways, I am still coming to terms with it, and will probably be processing what this truly means forever. Initially, I just sobbed for days, but had to pull my shit together to function at home and at work. I often cried on my way home from work, because it was the only time I had to myself, the only time I had to think. Probably just was well, or I would've been a train wreck, had I allowed myself to spiral into more self pity and more guilt.
Because in many ways, this is my fault. There is a higher risk of CP among triplets. Who knows what went wrong during my pregnancy, her birth, or her time in the NICU. But if we hadn't had to resort to ART, she wasn't a triplet, and I had carried her longer, this most likely would not have happened.
It took me many months to tell my closest friends. I didn't know what to say, or how they would react. I didn't want anyone treating her differently, pitying her, or worse, limiting her with what they thought she could or couldn't do.
I was already feeling utterly defeated, overwhelmed and inadequate to raise triplets, let alone a child with additional needs. I was barely coping with their PT and speech therapy, the eval appointments, and all the scheduling, that both the practical aspects and the emotional toll was just too much to comprehend.
I think anyone with multiples, and anyone with a special needs child can relate to the level of overwhelmedness one feels every day. That's a sort of crazy baseline we just all get used to and learn to deal with. It just never lets up, despite the infinite happy moments, and much fulfillment. It is a struggle to keep feeling like you're being a good parent despite the utter exhaustion and demands on your sanity. But the combination of Ada's diagnosis and having 3 teething toddlers who are still not sleeping through the night, pushed me beyond what I thought I could handle.
Yet, I am continuing to fight for her. To get her the services she needs. To work with her on each and every one of her therapy goals. And as I've had time to process the news, and as she is making strides, the diagnosis has become less painful to face.
But it is not over. Tomorrow, we head to the neurologist with Julia and Emma. Tonight, I am praying that they will be spared similar diagnoses. If you're reading this, please let me know you're out there.
Friday, February 04, 2011
Adoption and ART Grants
For my friends who need help with funds for adoption or ART, please look here:
Parenthood for Me: Grants
Parenthood for Me is now accepting applications for their 2011 grant cycle. Visit their website and read the FAQ for all the requirements. Deadline for submissions is May 1, 2011.
My RE "liked" them on FB; that's how I heard about them.
Parenthood for Me: Grants
Parenthood for Me is now accepting applications for their 2011 grant cycle. Visit their website and read the FAQ for all the requirements. Deadline for submissions is May 1, 2011.
My RE "liked" them on FB; that's how I heard about them.
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