Our smart little girl! While we were on vacation we realized that Kaitlyn knew the entire Pledge of Allegiance. We think she learned it in her Special Education class. Thank you Mrs. Gail Wish! Turn up your volumn as Kaitlyn's voice is quiet!
Showing posts with label micro preemie. Show all posts
Showing posts with label micro preemie. Show all posts
Monday, August 03, 2009
Sunday, December 28, 2008
Announcing "Extreme Preemie Syndrome"
I feel REALLY strongly about this.
There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!
Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.
My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.
Maybe I've been looking for something that doesn't exist.
This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.
I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.
Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."
This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.
Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.
There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.
I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.
So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.
There needs to be a newly formed label called: "Extreme Preemie Syndrome".
Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.
I heard a mom once say to me, trying to explain their child:
"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."
Here are some posts from my Micro Preemie Support group that got me thinking:
Stacy:
"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.
P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.
As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.
Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.
I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.
Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"
And from Anne:
"I completely agree Stacey that there should be something called Preemie Syndrome.
When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.
He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.
This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.
Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."
We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."
Thank you Stacey and Anne. You make me happy to have you as friends!
Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!
And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.
There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!
Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.
My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.
Maybe I've been looking for something that doesn't exist.
This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.
I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.
Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."
This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.
Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.
There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.
I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.
So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.
There needs to be a newly formed label called: "Extreme Preemie Syndrome".
Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.
I heard a mom once say to me, trying to explain their child:
"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."
Here are some posts from my Micro Preemie Support group that got me thinking:
Stacy:
"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.
P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.
As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.
Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.
I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.
Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"
And from Anne:
"I completely agree Stacey that there should be something called Preemie Syndrome.
When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.
He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.
This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.
Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."
We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."
Thank you Stacey and Anne. You make me happy to have you as friends!
Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!
And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.
Monday, November 10, 2008
Weight!
Isn't it ironic that Kaitlyn hasn't gained weight since May and Quinn is gaining about an ounce a day! The weight is coming off me and going onto Quinn, (which is a good thing as far as I'm concerned). It's like I can see the weight dropping off me and going right onto Quinn! Cool. I'm down to my pregnancy weight when I got pregnant with the twins. (I started Quinn's pregnancy 10 pounds heavier this time around).
To help compare, I looked back at my blog and saw that Kaitlyn was close to 10 pounds when she was over 7 months old. She has been hovering right around 26 pounds now since May. She's been any where from 26.6 to 25.8 since May. I'm tyring to explain to her that if she eats more she'll grow taller and fit into her clothes. I'm trying to now get really excited if the scale goes up. Am I causing her long-term weight issues? I so worry about that. But I have to get her to understand that eating is going to help her.
Quinn on the other hand is almost 11 pounds and he's not quite 4 months old.
Sunday, November 02, 2008
Unlike Stevie Wonder, she can see!!
On Thursday I took Katilyn to UC Berkley to the very specialized Low Vision Assessment clinic. Special Visual Assessment Clinic for the Handicapped (SVACH)
She again saw: Deborah Oral-Bixler
As a reminder, Kaitlyn had level 3 ROP in the NICU and had laser surgery to stop her retinas from detaching. (Stevie Wonder is blind due to ROP)
This appointment was long-in-coming.
Below I'll recap of a conversation I had months ago with our insurance company:
But before I get to that I had to write about my experience of being on a college campus, again.
I of course double duty tasked and pumped on the way to UC Berkely. The old "Pump and drive". I'm getting over the fear of other drivers looking over at me, Who cares. I don't have the time to pump any other place, so I often pump and drive.
Upon arrival at the campus - Wow, did I feel old, really old. I was late (what a surprise) it was raining and I couldn't find the correct parking lot (as the lot that for the clinic that I used last time is under construction after the long crazy protesting tree-sitters finally were removed. I parked way too far away and found myself trying to negotiate a stroller on a college campus in the rain feeling really, really lost and out of place and running late.
It was a blast of reality of how much my life has changed since I was a college student at UCSB (UC Santa Barbara). Wow, did I feel old. I had to ask a number of co-eds how to find the building I was supposed to go to. I certainly was the only one pushing a toddler in a stroller. I wondered what students thought as they saw me, a mom pushing a stroller. One girl helped me to carry the stoller down some steps that didn'g have a ramp. I ended up right in the university center square. I didn't feel "old" before going on campus, but here I was pushing a stroller around a college campus feeling ancient. I graduated from college when I was 22, and that was 20 (TWENTY) years ago! Oh My God. 20 years.
Anyways, sorry for that little lament.
Here's the conversation I had with my insurance company/case manager.
Me: "Kaitlyn needs to have another eye exam, as she holds paper about an inch from her face in order to see close-up, she also looks over the top of her glasses."
Our current Opthomologist has said everything fine. But to me, everything isn't fine, why is she looking so close at things. We would like to go back to the UC Berkeley center where she went (and you paid for) over a year ago."
Them: "well, looking at Kaitlyn's history, it looks like her Opthomologist (Dr G) didn't' dilate her eyes in order to do the exam"
Me: "they've been dilated in the past, but I don't really think that's the issue, I would like to get a 2nd opinion"
Them: "the last time she went to UC Berkeley, it was "just" an optician appointment and an opthomologist appt would be better for a 2nd opinion"
Me: "no, we need to go to UC Berkeley, this isn't' a regular optician appt, this appointment is almost 2 hours and includes attaching electrode stickies to her head to see what she is seeing among a lot of other things to check a child's vision"
Them: "no that's out of network, she'll be better off at an opthomologist anyways, as they are more advanced than an optician"
Me" Again, the appt at UC Berkeley is a very specialized Low Vision Assessment, supposedly one of only a few in the country for children, we need to go there."
Well, to make a long story short, they never approved it (even though approved the first visit over a year ago). I gave up on trying to explain why this place was different then what everyone else did. BUT our wonderful local school district has a donor that will pay for children to go to the vision assessment at UC Berkeley, and we just went on Thursday.
They determined:
1. That her left eye has a small amount of peripheral vision loss (common from ROP surgery)
2. That she has limited depth of field (which might account for her stumbling when objects are similar in color, but not for tripping over objects that are very clear).
3. That her vision is about 20/50 at this point, and the reason she looks so closely at items is that her vision is good close up, if she's holding something just a foot in front of her (esp without her glasses) it's very blurry. (-4.5). They didn't see any cause for alarm for it. As she gets older, her vision may still get worse and she may likely need to be at the front of the class or have large print, but at this point, they are happy with what they say (resolved ROP).
After children have ROP surgery, it can still happen that their retinas detach, but the surgery that is being done now is so much better than ROP a number of years ago where they froze the retinas which caused serious long-term scaring. They can see the scars on Kaitlyn's retinas, but they aren't concerned at this point.
All-in-all, well worth the visit and the wait.
Kaitlyn's eyes are really very good for having serious ROP and we are very thankful. At this point she won't qualify for vi son services through our school district (a good thing as far as I'm concerned!)
Did I mention in the past that I found THE PLACE to get eye glasses online? (adults and children)
Wow, what prices! http://zennioptical.com
She again saw: Deborah Oral-Bixler
As a reminder, Kaitlyn had level 3 ROP in the NICU and had laser surgery to stop her retinas from detaching. (Stevie Wonder is blind due to ROP)
This appointment was long-in-coming.
Below I'll recap of a conversation I had months ago with our insurance company:
But before I get to that I had to write about my experience of being on a college campus, again.
I of course double duty tasked and pumped on the way to UC Berkely. The old "Pump and drive". I'm getting over the fear of other drivers looking over at me, Who cares. I don't have the time to pump any other place, so I often pump and drive.
Upon arrival at the campus - Wow, did I feel old, really old. I was late (what a surprise) it was raining and I couldn't find the correct parking lot (as the lot that for the clinic that I used last time is under construction after the long crazy protesting tree-sitters finally were removed. I parked way too far away and found myself trying to negotiate a stroller on a college campus in the rain feeling really, really lost and out of place and running late.
It was a blast of reality of how much my life has changed since I was a college student at UCSB (UC Santa Barbara). Wow, did I feel old. I had to ask a number of co-eds how to find the building I was supposed to go to. I certainly was the only one pushing a toddler in a stroller. I wondered what students thought as they saw me, a mom pushing a stroller. One girl helped me to carry the stoller down some steps that didn'g have a ramp. I ended up right in the university center square. I didn't feel "old" before going on campus, but here I was pushing a stroller around a college campus feeling ancient. I graduated from college when I was 22, and that was 20 (TWENTY) years ago! Oh My God. 20 years.
Anyways, sorry for that little lament.
Here's the conversation I had with my insurance company/case manager.
Me: "Kaitlyn needs to have another eye exam, as she holds paper about an inch from her face in order to see close-up, she also looks over the top of her glasses."
Our current Opthomologist has said everything fine. But to me, everything isn't fine, why is she looking so close at things. We would like to go back to the UC Berkeley center where she went (and you paid for) over a year ago."
Them: "well, looking at Kaitlyn's history, it looks like her Opthomologist (Dr G) didn't' dilate her eyes in order to do the exam"
Me: "they've been dilated in the past, but I don't really think that's the issue, I would like to get a 2nd opinion"
Them: "the last time she went to UC Berkeley, it was "just" an optician appointment and an opthomologist appt would be better for a 2nd opinion"
Me: "no, we need to go to UC Berkeley, this isn't' a regular optician appt, this appointment is almost 2 hours and includes attaching electrode stickies to her head to see what she is seeing among a lot of other things to check a child's vision"
Them: "no that's out of network, she'll be better off at an opthomologist anyways, as they are more advanced than an optician"
Me" Again, the appt at UC Berkeley is a very specialized Low Vision Assessment, supposedly one of only a few in the country for children, we need to go there."
Well, to make a long story short, they never approved it (even though approved the first visit over a year ago). I gave up on trying to explain why this place was different then what everyone else did. BUT our wonderful local school district has a donor that will pay for children to go to the vision assessment at UC Berkeley, and we just went on Thursday.
They determined:
1. That her left eye has a small amount of peripheral vision loss (common from ROP surgery)
2. That she has limited depth of field (which might account for her stumbling when objects are similar in color, but not for tripping over objects that are very clear).
3. That her vision is about 20/50 at this point, and the reason she looks so closely at items is that her vision is good close up, if she's holding something just a foot in front of her (esp without her glasses) it's very blurry. (-4.5). They didn't see any cause for alarm for it. As she gets older, her vision may still get worse and she may likely need to be at the front of the class or have large print, but at this point, they are happy with what they say (resolved ROP).
After children have ROP surgery, it can still happen that their retinas detach, but the surgery that is being done now is so much better than ROP a number of years ago where they froze the retinas which caused serious long-term scaring. They can see the scars on Kaitlyn's retinas, but they aren't concerned at this point.
All-in-all, well worth the visit and the wait.
Kaitlyn's eyes are really very good for having serious ROP and we are very thankful. At this point she won't qualify for vi son services through our school district (a good thing as far as I'm concerned!)
Did I mention in the past that I found THE PLACE to get eye glasses online? (adults and children)
Wow, what prices! http://zennioptical.com
Friday, October 17, 2008
October Update
10.17.08
So much has happened, so little free time!
Let’s see:
Brian's dad visited with us for about 10 days and then a few weeks later Brian's mom came out for another 10 days. Our house is too little to have them come at the same time!
A few weeks ago Kaitlyn got sick (welcome to preschool, always our fear, as Kaitlyn wasn’t allowed to be around other children due to her risk of illness). Not long after she got it she gave it to me and Quinn. I got 2 houses into escrow with work (a good thing, but unfortunately not much of a “maternity leave” for me). Basically things were very crazy and not much fun working, pumping and taking care of a newborn (sleepless nights).
Kaitlyn seemed to have come through the illness fairly easily. (we thought). Quinn on the other hand got very stuffy and couldn’t eat well, and had a fever of 101. After doing a lot of running around for 3 different doctor visits, getting blood draws and urine samples, it was determined that it was just a virus too. His fever went down and cold symptoms went away, but he was crying in pain, so we kept thinking he maybe had an ear infection (he didn’t), Our doctors office was great, but eventually it just went away on it’s own.
Kaitlyn and Quinn both had check-ups this week, and we found out 2 weeks later that Kaitlyn’s had gone into an ear infection (hence explaining why she’s been super cranky the last 2 weeks)! (She’s been on anti-biotics for 10 days now, but I think she still has a fever.)
Back-ing back up again, 2 weeks ago Kaitlyn had 2 developmental evaluations and her first dental appointment. Our NICU has a developmental evaluation follow-up for preemies. Her appointment lasted 4 hours and was mom cranky afterwards!
Here are her test results from a test that was given back in august:
(She was tested at actual age of 33 months, adjusted age of 30 months)
Visual reception - 26 months
Receptive language - 36 months - her strong suit!
Expressive language - 36 months also strong
Fine Motor Skills - 26 months
Gross Motor Skills - 25 months
Her NICU evaluation came back:
She was given a “Bayley” test, which I think is a fairly accurate assessment
Results: (again tested at almost 36 months actual/33mo adjusted)
cognitive age equivalency of 34 months
Receptive Language 34 months
Expressive Language: 37-39 months
Fine Motor: 28 months
Gross Motor 26 months
Other results: “difficulty attending to tasks without moving, increased activity level, sensory hypersensitivity with sensory seeking behaviors, decreased social communication skills and attachment. It is unknown how much Kaitlyn’s visual deficits affect all these areas.”
Then the results from the ridiculous geriatric neurologist (from the NICU follow-up):
1. Hypotonia (meaning: condition of abnormally low muscle tone)
2. Apraxia (meaning: Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.)
3. Low Vision
Atypical behavior due to 1, 2 and 3 above
Now I really dislike the neurologist who made the above evaluation, I personally think he is full of shit, excuse the language. But he is as old as molasses, and made his diagnosis in about 2 minutes, while Kaitlyn was tearing apart his office (after a 4 hour test). I disliked him the first time I met him when Kaitlyn was 6 months old, I too then thought he shouldn’t be doing this anymore.
Here were their recommendations:
See a Developmental Pediatrician
OT for sensory processing and motor coordination
continue speech therapy for communication skill and oral motor coordination
recommend PT
recommend special education or regular education with treatment for apraxia and low vision
be re-evaluated again before Kindergarten.
Kaitlyn will be going to the UC Berkeley Low Vision Assessment Program in a few more weeks (which was very difficult to get approved by my insurance, but finally the school district stepped up and is going to pay for it).
School evaluation:
The day before she had her Early Intervention school follow-up in preparation for her IEP. They had to stop testing her at level 5 because she couldn’t sit any longer (not sure exactly what level 5 means) as she was far beyond in many ways. She of course proceeded to trip over the curb (2 times) which showed them how she stumbles, falls all the time. She was hyper, but they were so impressed with how smart she was. In a way it was “disappointing” (isn’t that crazy) as my gut tells me something is up, but she doesn’t always show that side of her when she’s interested in things.
The good news is that she did qualify for special education and as all of her Regional Center therapists recommended. Everyone calls her a “different” case, she doesn’t fit into any of the regular boxes. She didn’t qualify for full-time special day school, just a speech class and a movement (OT class). In her 2nd day of speech class, (which I think is going to be great for her), the teacher commented that she may need more consistent days of school (more than 2 1.5 hr sessions) after seeing her for just 2 days, which validates that she tends to “test” well but that the evaluators didn’t’ really get to see her idysycroncy . The speech school will try to make her look at eyes when she talks, and clearly noticed her lack of abilities in gross and fine motor skills, as well as self-help skills, but commenting to me again that she’s very bright and different than other developmental delay kids.
Eating:
Hmm, hard to explain exactly what is going on. Kaitlyn hadn’t vomited (until today) for probably close to 2 months! She unfortunately, however is loosing weight (which she’s never done before), she hasn’t gained weight since may 08 and is now moving backwards. I let up on forcing her to finish meals (which I think is what lead to the vomiting going away), BUT she’s just not eating very much.
I struggle with this Daily. Part of me so wants her to be a regular toddler that is a “picky” eater. Many toddlers don’t eat much, but then make up for it with a really big meal. The problem is that Kaitlyn never eats that really big meal. She’ll eat a “decent” meal every few days or so, but doesn’t eat enough to make up for the calories that she didn’t’ take in. She really doesn’t like to drink milk. We fortify milk with either cream or Carnation instant breakfast to get more calories in her.
When she does want to eat, it’s quite exciting to watch. In fact, it’s been so long since I posted but Kaitlyn had her very first McDonald Happy Meal about 2 months ago! Wow, isn’t that a funny thing for a parent to be excited about! Only those parents of kids with a feeding disorder can actually understand my joy, and the fact that we took pictures of the “Event!” Now she loves French fries, so ate an entire small bag of them, ate 1 chicken nugget and had about 2 sips of milk.
Kaitlyn had her 3 year check-up last week and I told her doc that I wanted to take out the gtube, the doc asked what our GI doc said (who knows I haven’t spoken to her in ages, as I’m really on my own in this task to get my daughter to eat). I suggested they speak, and they came back saying, no don’t take it out, do a 3 day food diary. Uggh. Haven’t done that yet, have been too busy.
Good news on one front, Kaitlyn HAS gotten taller, in fact she’s 95% height for her adjusted age and 50% height for her actual age. I felt good about that fact and was less worried about her weight, but I guess her BMI is still poor for the height /weight ratio and that’s what has the docs a bit worried. I can’t get any more food in her orally. I’d have to go back to giving her bonus bolus via tube, which I’m really, really fighting. How can we ever be done with the tube is she gets “used” to the tube. I was a skinny girl, maybe she’s just small. This is very frustrating!
We are closer to being a typical toddler, but she still isn’t very good at chewing, still prefers soft foods and can’t eat an apple or raw veggies, no way! Bites have to be very small, as she’ll gag on it, but at least now she often knows the bite is too big and will give it “back” to me, saying too big of bite.
Birthday Bash!
Wow, what a great time we had celebrating Kaitlyn’s 3rd birthday! 70 people came (over 24 kids), If you can believe it, it rained however (well, it did clear up by noon that day) but it was chilly and windy and the few days before (and after) it was in the 80’s. But it ended up being a wonderful party. We held it at the same park where we celebrated her first birthday.
To honor Corinne (before the kids did the piñata) I asked everyone to think for a moment of our beloved Corinne and how much we miss Kaitlyn’s twin sister. I could hardly get it out, I started getting really chocked up and that was that. I had ordered 1 white balloon that I was going to release, but it ended up not making it (I think due to the wind). I really wanted to memorialize Corinne more, but the moment was too emotional for me so it was brief. I think those who know me though knew how important it was.
Kaitlyn had a wonderful time, as you can tell by her pictures. She was in typical fashion very hyper and couldn’t’ sit still for a moment. She loved covering herself in party hats and fiesta beads, the more the better as far as K was concerned.
And the comments I received from those who know what Kaitlyn has been trough when it comes to feeding were so funny. They all loved seeing her stick her fingers in her cake (this was the first she’s ever done this) and eat goldfish crackers off the table. I guess she was an “eating” machine, she was snacking a lot and had a great time!
At her birthday party almost all of Kaitlyn’s grandparents were in attendance, what a treat: Grandma Corinne (my mom) and Grandpa Rich (from Los Angeles), Grandpa Poppy (my dad) and Grandma Mimi (from Los Angeles), and Grandma Mame (Brian’s mom) from Pittsburgh, PA. (Grandpa Gille was just out a few weeks earlier).
We even had a face painting and balloon lady-clown named star that was a big hit. Thank you everyone who attended, it meant the world to me and I know that Kaitlyn loved her party, she still keeps talking about the piñata and the candy, party hats, streamers and balloons.
Quinn
Quinn is doing just fabulously! It’s so nice and amazing to be able to write that. He eats like a champ (From the bottle). I attempt to breast feed a bit, but he really doesn’t like it much and mom gets frustrated (due to the fact that I’m working and don’t really have a lot of free time).
Maternity leave? Not for me sadly! Not long after Quinn came home I became very busy with work (a good thing) and just closed 2 escrows this last week.
I’m still a pumping queen and have already quite a bit of breast milk stored up for the little guy. I really, really hate pumping though, have I said that before. It’s really what’s making my life difficult as of late, as it takes 30 minutes when I pump. I’ve just recently cut out a pump or 2 during the day (and went 8 hours sleeping at night recently too).
Quinn is up to 10 pounds (or just under at his last check-up). He does however have some fluid on one of his testicles that they are closely watching.
He just started social smiling. Kaitlyn NEVER EVER did this! It’s so wonderfully tear-jerking amazing to see. Wow, he’s such a beautiful, good boy and now that he’s smiling and interacting, I’m in love! I got my dream of a healthy, “normal” experience this time around and I’m loving it. It’s not really all that hard. It’s so easy to leave the house with him, I always feel like I’m forgetting things when I leave (syringes, vomit cloths, etc).
Now, he’s still eating every 3 hours (throughout the night too) and I’m extremely tired, but that’ what’s expected of an almost 3 month old newborn so you won’t hear any complaining from me!
On Friday last week I drove to Los Angeles with both kids and my nanny. I had to attend a conference for work, and my mom couldn’t take care of Quinn all night (he’s still up every 3 hours). I never much went anywhere when Kaitlyn was still tube fed and vomiting, as it was just too difficult, with all the supplies and the vomiting. Once I knew I could stop and get a happy meal for her I knew that I could start having a bit more freedom. However, it was hard to drive with a newborn who needs to eat every 3 hours. The drive was very long and once we were in LA hit some horrible traffic, so the drive ended up taking 11 hours! Ugggh!
I then spent 2 days away from the kids at a conference (meaning uninterrupted sleep for 8 hours for 2 nights in a row). Wow, I haven’t slept that long since I was hospitalized back in June.
I got h home last Tuesday night (well Wednesday morning) at 4am! Yes, how stupid am I. I figured driving at night would be easier on Kaitlyn (as she can sleep and I won’t have to stop and do marathon feeding sessions), but I got delayed, (it still takes forever to pack) and didn’t leave LA until 10pm. I was DEAD beat upon returning home and it’s taken me the last few days to recover.
Well, that about get’s you up to speed on everything.
I'll try to work on pictures soon!
So much has happened, so little free time!
Let’s see:
Brian's dad visited with us for about 10 days and then a few weeks later Brian's mom came out for another 10 days. Our house is too little to have them come at the same time!
A few weeks ago Kaitlyn got sick (welcome to preschool, always our fear, as Kaitlyn wasn’t allowed to be around other children due to her risk of illness). Not long after she got it she gave it to me and Quinn. I got 2 houses into escrow with work (a good thing, but unfortunately not much of a “maternity leave” for me). Basically things were very crazy and not much fun working, pumping and taking care of a newborn (sleepless nights).
Kaitlyn seemed to have come through the illness fairly easily. (we thought). Quinn on the other hand got very stuffy and couldn’t eat well, and had a fever of 101. After doing a lot of running around for 3 different doctor visits, getting blood draws and urine samples, it was determined that it was just a virus too. His fever went down and cold symptoms went away, but he was crying in pain, so we kept thinking he maybe had an ear infection (he didn’t), Our doctors office was great, but eventually it just went away on it’s own.
Kaitlyn and Quinn both had check-ups this week, and we found out 2 weeks later that Kaitlyn’s had gone into an ear infection (hence explaining why she’s been super cranky the last 2 weeks)! (She’s been on anti-biotics for 10 days now, but I think she still has a fever.)
Back-ing back up again, 2 weeks ago Kaitlyn had 2 developmental evaluations and her first dental appointment. Our NICU has a developmental evaluation follow-up for preemies. Her appointment lasted 4 hours and was mom cranky afterwards!
Here are her test results from a test that was given back in august:
(She was tested at actual age of 33 months, adjusted age of 30 months)
Visual reception - 26 months
Receptive language - 36 months - her strong suit!
Expressive language - 36 months also strong
Fine Motor Skills - 26 months
Gross Motor Skills - 25 months
Her NICU evaluation came back:
She was given a “Bayley” test, which I think is a fairly accurate assessment
Results: (again tested at almost 36 months actual/33mo adjusted)
cognitive age equivalency of 34 months
Receptive Language 34 months
Expressive Language: 37-39 months
Fine Motor: 28 months
Gross Motor 26 months
Other results: “difficulty attending to tasks without moving, increased activity level, sensory hypersensitivity with sensory seeking behaviors, decreased social communication skills and attachment. It is unknown how much Kaitlyn’s visual deficits affect all these areas.”
Then the results from the ridiculous geriatric neurologist (from the NICU follow-up):
1. Hypotonia (meaning: condition of abnormally low muscle tone)
2. Apraxia (meaning: Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.)
3. Low Vision
Atypical behavior due to 1, 2 and 3 above
Now I really dislike the neurologist who made the above evaluation, I personally think he is full of shit, excuse the language. But he is as old as molasses, and made his diagnosis in about 2 minutes, while Kaitlyn was tearing apart his office (after a 4 hour test). I disliked him the first time I met him when Kaitlyn was 6 months old, I too then thought he shouldn’t be doing this anymore.
Here were their recommendations:
See a Developmental Pediatrician
OT for sensory processing and motor coordination
continue speech therapy for communication skill and oral motor coordination
recommend PT
recommend special education or regular education with treatment for apraxia and low vision
be re-evaluated again before Kindergarten.
Kaitlyn will be going to the UC Berkeley Low Vision Assessment Program in a few more weeks (which was very difficult to get approved by my insurance, but finally the school district stepped up and is going to pay for it).
School evaluation:
The day before she had her Early Intervention school follow-up in preparation for her IEP. They had to stop testing her at level 5 because she couldn’t sit any longer (not sure exactly what level 5 means) as she was far beyond in many ways. She of course proceeded to trip over the curb (2 times) which showed them how she stumbles, falls all the time. She was hyper, but they were so impressed with how smart she was. In a way it was “disappointing” (isn’t that crazy) as my gut tells me something is up, but she doesn’t always show that side of her when she’s interested in things.
The good news is that she did qualify for special education and as all of her Regional Center therapists recommended. Everyone calls her a “different” case, she doesn’t fit into any of the regular boxes. She didn’t qualify for full-time special day school, just a speech class and a movement (OT class). In her 2nd day of speech class, (which I think is going to be great for her), the teacher commented that she may need more consistent days of school (more than 2 1.5 hr sessions) after seeing her for just 2 days, which validates that she tends to “test” well but that the evaluators didn’t’ really get to see her idysycroncy . The speech school will try to make her look at eyes when she talks, and clearly noticed her lack of abilities in gross and fine motor skills, as well as self-help skills, but commenting to me again that she’s very bright and different than other developmental delay kids.
Eating:
Hmm, hard to explain exactly what is going on. Kaitlyn hadn’t vomited (until today) for probably close to 2 months! She unfortunately, however is loosing weight (which she’s never done before), she hasn’t gained weight since may 08 and is now moving backwards. I let up on forcing her to finish meals (which I think is what lead to the vomiting going away), BUT she’s just not eating very much.
I struggle with this Daily. Part of me so wants her to be a regular toddler that is a “picky” eater. Many toddlers don’t eat much, but then make up for it with a really big meal. The problem is that Kaitlyn never eats that really big meal. She’ll eat a “decent” meal every few days or so, but doesn’t eat enough to make up for the calories that she didn’t’ take in. She really doesn’t like to drink milk. We fortify milk with either cream or Carnation instant breakfast to get more calories in her.
When she does want to eat, it’s quite exciting to watch. In fact, it’s been so long since I posted but Kaitlyn had her very first McDonald Happy Meal about 2 months ago! Wow, isn’t that a funny thing for a parent to be excited about! Only those parents of kids with a feeding disorder can actually understand my joy, and the fact that we took pictures of the “Event!” Now she loves French fries, so ate an entire small bag of them, ate 1 chicken nugget and had about 2 sips of milk.
Kaitlyn had her 3 year check-up last week and I told her doc that I wanted to take out the gtube, the doc asked what our GI doc said (who knows I haven’t spoken to her in ages, as I’m really on my own in this task to get my daughter to eat). I suggested they speak, and they came back saying, no don’t take it out, do a 3 day food diary. Uggh. Haven’t done that yet, have been too busy.
Good news on one front, Kaitlyn HAS gotten taller, in fact she’s 95% height for her adjusted age and 50% height for her actual age. I felt good about that fact and was less worried about her weight, but I guess her BMI is still poor for the height /weight ratio and that’s what has the docs a bit worried. I can’t get any more food in her orally. I’d have to go back to giving her bonus bolus via tube, which I’m really, really fighting. How can we ever be done with the tube is she gets “used” to the tube. I was a skinny girl, maybe she’s just small. This is very frustrating!
We are closer to being a typical toddler, but she still isn’t very good at chewing, still prefers soft foods and can’t eat an apple or raw veggies, no way! Bites have to be very small, as she’ll gag on it, but at least now she often knows the bite is too big and will give it “back” to me, saying too big of bite.
Birthday Bash!
Wow, what a great time we had celebrating Kaitlyn’s 3rd birthday! 70 people came (over 24 kids), If you can believe it, it rained however (well, it did clear up by noon that day) but it was chilly and windy and the few days before (and after) it was in the 80’s. But it ended up being a wonderful party. We held it at the same park where we celebrated her first birthday.
To honor Corinne (before the kids did the piñata) I asked everyone to think for a moment of our beloved Corinne and how much we miss Kaitlyn’s twin sister. I could hardly get it out, I started getting really chocked up and that was that. I had ordered 1 white balloon that I was going to release, but it ended up not making it (I think due to the wind). I really wanted to memorialize Corinne more, but the moment was too emotional for me so it was brief. I think those who know me though knew how important it was.
Kaitlyn had a wonderful time, as you can tell by her pictures. She was in typical fashion very hyper and couldn’t’ sit still for a moment. She loved covering herself in party hats and fiesta beads, the more the better as far as K was concerned.
And the comments I received from those who know what Kaitlyn has been trough when it comes to feeding were so funny. They all loved seeing her stick her fingers in her cake (this was the first she’s ever done this) and eat goldfish crackers off the table. I guess she was an “eating” machine, she was snacking a lot and had a great time!
At her birthday party almost all of Kaitlyn’s grandparents were in attendance, what a treat: Grandma Corinne (my mom) and Grandpa Rich (from Los Angeles), Grandpa Poppy (my dad) and Grandma Mimi (from Los Angeles), and Grandma Mame (Brian’s mom) from Pittsburgh, PA. (Grandpa Gille was just out a few weeks earlier).
We even had a face painting and balloon lady-clown named star that was a big hit. Thank you everyone who attended, it meant the world to me and I know that Kaitlyn loved her party, she still keeps talking about the piñata and the candy, party hats, streamers and balloons.
Quinn
Quinn is doing just fabulously! It’s so nice and amazing to be able to write that. He eats like a champ (From the bottle). I attempt to breast feed a bit, but he really doesn’t like it much and mom gets frustrated (due to the fact that I’m working and don’t really have a lot of free time).
Maternity leave? Not for me sadly! Not long after Quinn came home I became very busy with work (a good thing) and just closed 2 escrows this last week.
I’m still a pumping queen and have already quite a bit of breast milk stored up for the little guy. I really, really hate pumping though, have I said that before. It’s really what’s making my life difficult as of late, as it takes 30 minutes when I pump. I’ve just recently cut out a pump or 2 during the day (and went 8 hours sleeping at night recently too).
Quinn is up to 10 pounds (or just under at his last check-up). He does however have some fluid on one of his testicles that they are closely watching.
He just started social smiling. Kaitlyn NEVER EVER did this! It’s so wonderfully tear-jerking amazing to see. Wow, he’s such a beautiful, good boy and now that he’s smiling and interacting, I’m in love! I got my dream of a healthy, “normal” experience this time around and I’m loving it. It’s not really all that hard. It’s so easy to leave the house with him, I always feel like I’m forgetting things when I leave (syringes, vomit cloths, etc).
Now, he’s still eating every 3 hours (throughout the night too) and I’m extremely tired, but that’ what’s expected of an almost 3 month old newborn so you won’t hear any complaining from me!
On Friday last week I drove to Los Angeles with both kids and my nanny. I had to attend a conference for work, and my mom couldn’t take care of Quinn all night (he’s still up every 3 hours). I never much went anywhere when Kaitlyn was still tube fed and vomiting, as it was just too difficult, with all the supplies and the vomiting. Once I knew I could stop and get a happy meal for her I knew that I could start having a bit more freedom. However, it was hard to drive with a newborn who needs to eat every 3 hours. The drive was very long and once we were in LA hit some horrible traffic, so the drive ended up taking 11 hours! Ugggh!
I then spent 2 days away from the kids at a conference (meaning uninterrupted sleep for 8 hours for 2 nights in a row). Wow, I haven’t slept that long since I was hospitalized back in June.
I got h home last Tuesday night (well Wednesday morning) at 4am! Yes, how stupid am I. I figured driving at night would be easier on Kaitlyn (as she can sleep and I won’t have to stop and do marathon feeding sessions), but I got delayed, (it still takes forever to pack) and didn’t leave LA until 10pm. I was DEAD beat upon returning home and it’s taken me the last few days to recover.
Well, that about get’s you up to speed on everything.
I'll try to work on pictures soon!
Monday, January 28, 2008
Kaitlyns First Haircut
You can really hear Katilyn's quiet voice from her paralyzed vocal chords in this video! It's a cute one!
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