After an extended absence, I'm back! We've had a few crazy months.
First, I had surgery in mid-August to remove scar tissue from the surgery when I had the tumor removed (long story for another day). They basically had to saw me in half to do it, so I had a pretty lengthy recovery.
Then the power cord for the computer broke and I didn't want to spend $120 for a new one so we were without a computer for a couple months. I finally decided to look on eBay and found one for $20, so we have computer access once again! Long live eBay.
And last Monday Kaitlyn had surgery to correct the midface deficiency. It was a pretty involved process, so I'll have to give details another day. I don't have any pictures transferred to my computer yet, so when I get them I'll post an email update.
Be back soon!
Tuesday, December 23, 2008
Saturday, August 9, 2008
Kaitlyn's Face Surgery
We have to decide if we're going to do Kaitlyn's face surgery right now or if we're going to wait until she's older. The problem she has is that her maxilla (upper jaw) isn't growing, but her mandible (lower jaw) and forehead are. The result is that the middle part of her face is "sinking" for lack of a better word. She has a pretty serious under bite right now and also has sleep apnea that is caused by a small airway as a result of this problem. We're going to try c-pap to see if it helps the apnea, but I highly doubt we're going to be able to get her to keep the mask on her face all night. She just doesn't seem like the type that will cooperate with that (she's a stubborn little stinker - nothing at all like her mother! He he he he).
They will fix the problem by surgically attaching a device to her head that will attach to her maxilla. This will be cranked forward a few millimeters at a time until it is in the correct position.
The problem with the procedure is that it is very invasive, painful, and will keep her out of school for several months. Here's a picture of the device:
So obviously I can't send her to school while she has the device on. This will kill her because she loves school, but with the problems we had last year I'm not all that upset about homeschooling her for a few months. It may, however, drive me crazy. We'll see.
So we have to decide if we're going to do the surgery now, while she's still young and will hopefully forget all about it, or when she's older and better equipped to handle it mentally. If we don't do the surgery at all the problem will continue to get worse, and she could (and probably would) end up looking like she got punched in the face (along with her sleep apnea getting worse and possibly life threatening).
I hate having to make decisions like this, because I just don't know what the right thing to do is. Part of me can't bear to put my baby through this procedure, and part of me knows it has to be done. I'm talking to her orthodontist right now about the possibility of using a device at night that will prevent her from getting worse until she's older (around 16) and can have a different procedure that is less stressful and more internal (although it's also more painful and more invasive and may not work as well). I haven't heard back from the orthodontist to see what he thinks about it, but that may be an option.
The biggest problem is that she has horrible behavior being attributed to ADHD. We haven't been able to control her ADHD, and now I'm wondering if the behavior is being caused by sleep apnea instead of ADHD. If we can't get her to wear c-pap, or if she's just going to get worse and worse until c-pap doesn't really help her, we'll have to do the surgery no matter what.
Sigh. The things they don't tell you about when you sign up to be a parent...
They will fix the problem by surgically attaching a device to her head that will attach to her maxilla. This will be cranked forward a few millimeters at a time until it is in the correct position.
The problem with the procedure is that it is very invasive, painful, and will keep her out of school for several months. Here's a picture of the device:
So obviously I can't send her to school while she has the device on. This will kill her because she loves school, but with the problems we had last year I'm not all that upset about homeschooling her for a few months. It may, however, drive me crazy. We'll see.
So we have to decide if we're going to do the surgery now, while she's still young and will hopefully forget all about it, or when she's older and better equipped to handle it mentally. If we don't do the surgery at all the problem will continue to get worse, and she could (and probably would) end up looking like she got punched in the face (along with her sleep apnea getting worse and possibly life threatening).
I hate having to make decisions like this, because I just don't know what the right thing to do is. Part of me can't bear to put my baby through this procedure, and part of me knows it has to be done. I'm talking to her orthodontist right now about the possibility of using a device at night that will prevent her from getting worse until she's older (around 16) and can have a different procedure that is less stressful and more internal (although it's also more painful and more invasive and may not work as well). I haven't heard back from the orthodontist to see what he thinks about it, but that may be an option.
The biggest problem is that she has horrible behavior being attributed to ADHD. We haven't been able to control her ADHD, and now I'm wondering if the behavior is being caused by sleep apnea instead of ADHD. If we can't get her to wear c-pap, or if she's just going to get worse and worse until c-pap doesn't really help her, we'll have to do the surgery no matter what.
Sigh. The things they don't tell you about when you sign up to be a parent...
Friday, August 8, 2008
Family photo
Finally, a family photo showing the best of us!
Ha ha. I kill myself. So here's another photo. Not quite so good of me, but better of everyone else.
But admit it - when you look at family photos, you're only really concerned with how you look.
Ha ha. I kill myself. So here's another photo. Not quite so good of me, but better of everyone else.
But admit it - when you look at family photos, you're only really concerned with how you look.
The Eric Clapton concert, AKA The James Taylor Concert
A while back I posted that I was looking forward to going to the Eric Clapton concert this summer. And I was. I thought it would be awesome to finally see him in person and hear him tell the story of "Tears in Heaven" in person.
However, I actually had bought tickets to the James Taylor concert, since Eric Clapton was coming nowhere near Utah this summer. When I realized the mistake in my post, I decided to just leave it.
Anyway, the concert was great. We've seen him once before, but this time he was much more chatty and he was actually pretty funny. He sang all the classics, plus a few covers of some more recent songs. We had a great time, and it was wonderful to be able to have a date with my husband. Thanks again, Kaylene and Steve, for watching the rugrats, especially when you had to get up early for work the next day!
A picture of us at the concert... the man in the background is our guardian angel. The woman giving Mike the stink eye is our guardian devil.
However, I actually had bought tickets to the James Taylor concert, since Eric Clapton was coming nowhere near Utah this summer. When I realized the mistake in my post, I decided to just leave it.
Anyway, the concert was great. We've seen him once before, but this time he was much more chatty and he was actually pretty funny. He sang all the classics, plus a few covers of some more recent songs. We had a great time, and it was wonderful to be able to have a date with my husband. Thanks again, Kaylene and Steve, for watching the rugrats, especially when you had to get up early for work the next day!
A picture of us at the concert... the man in the background is our guardian angel. The woman giving Mike the stink eye is our guardian devil.
Friday, August 1, 2008
Camping
We went camping as a family for the 2nd time since Ashton was born. Since our first trip camping was, well - let me just say disastrous, I was very nervous to try it again. But other than nearly getting eaten by a bear, we had a great time!
Ok, ok, so the bear didn't come within 5 miles of us, but it was still a close call. Since I'm going to do several posts today and I don't want my typin' fingers to get tired, I'll spare you the gory details. But if anyone is curious send me an email. It truly is a story to behold.
Evidently the high altitude and resulting lack of oxygen caused Ashton to forget how to dress himself.
After fixing his shirt (it wasn't worth it to fight over the pants), I got this picture of the two of them together. This was a rare, blissful moment of peace and quiet in the middle of the hootenany (how do you spell hootenany? I don't have a clue, although I'm sure some of you will chime in).
My mom came with us, which was a huge blessing because she cleaned, cleaned, cleaned and cooked, cooked, cooked. These are things I'm not particularly good at even when I'm not battling a water pump and propane stove. She made the trip much cleaner and tastier. Oh, and more fun. MOM, LOOK OUT! A BEAR!
Ok, ok, so the bear didn't come within 5 miles of us, but it was still a close call. Since I'm going to do several posts today and I don't want my typin' fingers to get tired, I'll spare you the gory details. But if anyone is curious send me an email. It truly is a story to behold.
Evidently the high altitude and resulting lack of oxygen caused Ashton to forget how to dress himself.
After fixing his shirt (it wasn't worth it to fight over the pants), I got this picture of the two of them together. This was a rare, blissful moment of peace and quiet in the middle of the hootenany (how do you spell hootenany? I don't have a clue, although I'm sure some of you will chime in).
My mom came with us, which was a huge blessing because she cleaned, cleaned, cleaned and cooked, cooked, cooked. These are things I'm not particularly good at even when I'm not battling a water pump and propane stove. She made the trip much cleaner and tastier. Oh, and more fun. MOM, LOOK OUT! A BEAR!
Wednesday, July 16, 2008
My Brief Return to Junior High
I almost titled this blog something else since it refers to my recent American Idol concert experience, but I was afraid if I did I would make the authorities nervous. Those of you who know me well know what I mean.
This is my sister, my mom, and me at the concert last night.
I'll admit it. I'm an American Idol geek. I live for the start of the season and spend the next few months working feverishly to clear up my Tuesday and Wednesday nights (thanks to Karin and Hannah for being understanding this season - we had to rearrange violin lessons, something I don't allow students to do, to accommodate AI on Tuesdays). My fervor intensified this year due to the amazing, talented, adorable, DAVID ARCHULETA.
I couldn't find our digital camera yesterday, so I showed up at the concert with a disposable 35 mm and the camera on my phone. My phone camera is really crappy, so I got absolutely no pictures except two. Seriously, I took hundreds in an attempt to get a couple of digital shots and they all turned up as bright pillars of light:
In case you can't tell, that is a picture of Jason Castro singing "Somewhere Over the Rainbow."
So anyway, I kept taking pictures even though it appeared futile. To my great astonishment and wonder, two pictures ended up being remotely identifiable, and BOTH OF THEM WERE OF ARCHIE. I guess this proves that it pays to live right (or something like that).
This picture is when he first started singing. They brought him up to the stage on a platform, sitting at a grand piano. He sang 4 songs, and the crowd didn't stop screaming until he yelled into the microphone that it was David Cook's turn to sing and then turned and walked off the stage (sweetly and politely of course). I doubt the crowd would ever have stopped screaming. In case you can't identify him in the picture, he is in the bottom right corner sitting at the piano. I have no idea what's on the jumbotron (center of the picture).
This is a picture of him on the jumbotron. I think you can actually identify that it's him in this picture. Well, sort of.
Besides listening to him sing, there were two other highlights of the evening. First had to do with Michael Johns. His picture:
This is my sister, my mom, and me at the concert last night.
I'll admit it. I'm an American Idol geek. I live for the start of the season and spend the next few months working feverishly to clear up my Tuesday and Wednesday nights (thanks to Karin and Hannah for being understanding this season - we had to rearrange violin lessons, something I don't allow students to do, to accommodate AI on Tuesdays). My fervor intensified this year due to the amazing, talented, adorable, DAVID ARCHULETA.
I couldn't find our digital camera yesterday, so I showed up at the concert with a disposable 35 mm and the camera on my phone. My phone camera is really crappy, so I got absolutely no pictures except two. Seriously, I took hundreds in an attempt to get a couple of digital shots and they all turned up as bright pillars of light:
In case you can't tell, that is a picture of Jason Castro singing "Somewhere Over the Rainbow."
So anyway, I kept taking pictures even though it appeared futile. To my great astonishment and wonder, two pictures ended up being remotely identifiable, and BOTH OF THEM WERE OF ARCHIE. I guess this proves that it pays to live right (or something like that).
This picture is when he first started singing. They brought him up to the stage on a platform, sitting at a grand piano. He sang 4 songs, and the crowd didn't stop screaming until he yelled into the microphone that it was David Cook's turn to sing and then turned and walked off the stage (sweetly and politely of course). I doubt the crowd would ever have stopped screaming. In case you can't identify him in the picture, he is in the bottom right corner sitting at the piano. I have no idea what's on the jumbotron (center of the picture).
This is a picture of him on the jumbotron. I think you can actually identify that it's him in this picture. Well, sort of.
Besides listening to him sing, there were two other highlights of the evening. First had to do with Michael Johns. His picture:
Well, I can't upload the picture because blogspot is having issues. Either that or my computer is. But imagine the picture of Jason Castro, and pretend it's a picture of Michael Johns. Anyway, he was wearing a jacket during his first two songs. He said that it was getting hot so he took off his jacket, revealing...
a t-shirt saying "I VOTED FOR DAVID ARCHULETA!"
So cute!
Last highlight: What is the worst part of going to any concert? That's right, road rage in the parking lot after it's over. Well, when we bought the tickets online we paid $25 for a parking pass so we wouldn't have to worry about it that night. What we didn't know is that it was for PREMIUM parking, which ended up being really cool. We parked right at the E-Center and were 5 rows from the exit. We figured it wouldn't take too long to get out, so we were excited. We also got our own entrance into the concert so we didn't have to wait in the long lines at the REGULAR people entrance.
It turns out that our seats were the first seats we came to when we entered the arena (from our private entrance). We were on a riser on padded chairs, and were right next to the vestibule thing where you enter. We literally couldn't have been closer or more convenient to our car (we also had an absolutely perfect view of the stage because we were raised about two feet from the floor and there was no one in front of us). So when the concert was over, we booked it to the parking lot, got in the car, and left the concert all in LESS THAN 5 MINUTES. From the moment we left our cushy, padded seats until we were on 3100 south headed for home was less than 5 minutes. I kid you not. It was the most amazing driving experience I've ever had, and it was all complete luck. Now that I know, however, I'll be sure to repeat that amazing convergence of circumstances the next time we go to the E Center.
One last thing of note, and this is going to prove what a total geek I am because it's bringing tears to my eyes even now. I loved Brooke White, and not even because of the whole Mormon thing. I think she is an amazing singer and has one of the most beautiful, distinctive voices I've ever heard. I was really looking forward to hearing her sing. She sang "Yellow" by Coldplay, which is a favorite song of mine. When she got to the chorus, she sang, "You know I love you so... Utah I love you so." I don't know why that touched me so much, except she realized that she has a huge fan base here and acknowledged it.
The concert was awesome and we had a great time. I'm sad it's over because I've been looking forward to it for so long, but hopefully some of them will be back. And I have to say that I have more respect and appreciation for David Cook now. I noticed he had the initials AC on his guitars, and wondered if they were for his brother - the one who tried out with him and didn't make it. I found out that the initials are for him (Andrew Cook), but also for his other brother Adam who has terminal brain cancer. As a rule I don't like David Cook because he took the title away from Archie, but I was impressed by his love for his brothers and touched by his tribute.
So now it's over and the only thing I have to look forward to is Eric Clapton sometime in August. Sigh.
Monday, July 14, 2008
Picture of Me and Mike
It has come to my attention that some people are bothered by the fact that there are no pictures of me and Mike on my blog. We just plain don't have any pictures of ourselves, so I had someone take a picture of us Saturday night at a party. Thought I'd include it here:
There. Hope you're satisfied.
There. Hope you're satisfied.
Saturday, July 12, 2008
Fishing
We went to the Uintahs last week and Grandpa Roy brought along his fishing pole. I was a bit nervous because Kaitlyn went through a phase last year where she thought she was a fish, but then decided she was a shark so she could eat fish (except puffer fish which are evidently poisonous to sharks), and then decided she wasn't actually a shark but was indeed a puffer fish because they were smarter than sharks. Anywho, I wasn't quite sure how she would take it if she figured out that the thing on the end of the pole used to be alive, and was now going to be dinner (GAG, by the way, but maybe I can be a grownup and not instill my hatred of seafood in my children).
Luckily I was spared from having to form an intelligent comment because at that moment Grandpa decided to gut the fish. This turned out to be the most fascinating thing Kaitlyn had ever seen and we couldn't tear her away from it (and we tried - if for no other reason than to spare me the horror of having to try to explain to her what he was doing).
When Grandpa was finished, he very kindly allowed Kaitlyn to hold the fish's head so she could examine it up close and personal. She stared in its eyes, stuck her finger in its mouth, and tried to feed it a worm. I guess the conversation on death hadn't gone as well as I'd hoped. She played with it for about 10 minutes before I couldn't take it anymore and made her put it down. Then Grandpa cooked it and shared it with her (but first he tried to convince me that I should try the fish because he was just sure I would love it. Why is it everyone is convinced that if they prepare the fish themselves I'll magically decide I like it? Fish is fish is fish, and it's disgusting even if it's coated in chocolate).
So that was Kaitlyn's first experience as a fisherwoman. It was a raging success, which makes me nervous since we don't even own a fishing pole. Hopefully Grandpa will be willing to take her on more expeditions, since I certainly don't plan on it.
Well, I was right to worry. She was fascinated by the fish Grandpa caught and while poking at it explained that the fish needed to find its family, so I had to gently explain that the fish was dead and wouldn't live with its family any more. She then said that the fish needed to find its DEAD family, not its ALIVE family. Yes, really. And of course things that I never thought I'd have to say were flashing through my head (although I blew it because it would have been the perfect time to talk about eternal fish families...).
Luckily I was spared from having to form an intelligent comment because at that moment Grandpa decided to gut the fish. This turned out to be the most fascinating thing Kaitlyn had ever seen and we couldn't tear her away from it (and we tried - if for no other reason than to spare me the horror of having to try to explain to her what he was doing).
When Grandpa was finished, he very kindly allowed Kaitlyn to hold the fish's head so she could examine it up close and personal. She stared in its eyes, stuck her finger in its mouth, and tried to feed it a worm. I guess the conversation on death hadn't gone as well as I'd hoped. She played with it for about 10 minutes before I couldn't take it anymore and made her put it down. Then Grandpa cooked it and shared it with her (but first he tried to convince me that I should try the fish because he was just sure I would love it. Why is it everyone is convinced that if they prepare the fish themselves I'll magically decide I like it? Fish is fish is fish, and it's disgusting even if it's coated in chocolate).
So that was Kaitlyn's first experience as a fisherwoman. It was a raging success, which makes me nervous since we don't even own a fishing pole. Hopefully Grandpa will be willing to take her on more expeditions, since I certainly don't plan on it.
Saturday, July 5, 2008
Kaitlyn's Ear Surgery
I decided to post some pictures of Kaitlyn's surgery. This is my poor, pathetic girl before surgery:
She was very anxious so they gave her something to calm her down (too bad they couldn't give something to her parents, too). The stuff made her LOOPY, but fortunately it did calm her down. Grandma loved being there with her, and Kaitlyn loved having her there.
This is her soon after surgery. She decided she didn't want to wear the hospital gown anymore. Can't say I blame her. The big white thing over her ear is supposed to protect it, but she ripped it off 3 or 4 times while we were at the hospital.
The stuffed animal is Horton. She took it into surgery with her, and the surgeon wrapped his head with gauze and put a bandage on his ear. It was very sweet.
Fourth of July at Lagoon
So I'm usually not masochistic, but since the Fourth of July is Mike's birthday and he wanted to go to Lagoon, I grudgingly went along. It was projected to be the hottest day of the year at 102 degrees. In addition, I stopped liking Lagoon around high school when I realized that it's lame and the only reason it's still in existence is that it has a complete monopoly.
Luckily, I was pleasantly surprised. The kids had a blast! They loved the rides and enjoyed spending the day with Grandma and Grandpa. FYI, Kaitlyn's headband is my genius solution to the problem of how to keep a cotton ball in her ear (she's still recovering from surgery). We were trying to tape the cotton ball on somehow, but it wasn't working. These stretchy headbands are perfect.
Ashton loved riding on the "friendly" dragon (the little kids' roller coaster), and was dying to go on the Colossus. Unfortunately he was 6 inches too short. He was very brave, however, and went on Tidal Wave and the Rock-O-Planes. He was much braver than his mom, who was proud of herself for going on the Music Express.
And the best part of all: it was overcast the entire day so it wasn't too hot. Yippeeeeee!
Tuesday, July 1, 2008
Sick
Kaitlyn and Ashton have both had horrible stomach bugs for about a week now. Ashton has been sleeping about 18 hours a day, which is very unusual for him, and Kaitlyn has been sitting around watching TV. K seems to be on the mend, but A is still sleeping and it's 9:00 am. I'll have to post pictures of their pathetic selves.
Sunday, June 29, 2008
Kaitlyn and Ashton
We have two awesome kids - Kaitlyn and Ashton. Kaitlyn is 7 and will be in 2nd grade this year. She is hearing impaired, although I hate putting it that way because I feel like I'm defining her by a physical trait rather than by who she is. But "she has hearing impairment" sounds silly, so there you have it. She attends the School for the Deaf, but this is her last year there because she is doing so well she doesn't qualify for the school anymore. This is wonderful and amazing, especially considering the other issues she has. She has (not IS) a very rare chromosomal abnormality called 18Q-. This causes many different issues, and when she was diagnosed we were told that she would most likely never speak more than a small handful of words, and may not walk until she was 4 or 5. We were told to expect her to be moderately to severely mentally retarded. Our doctors and geneticists were kind but realistic, and told us to hope for the best but be prepared for the worst.
Fast forward several years, and the Kaitlyn we see now is nothing like we were told to expect. She began talking at 12 months, walking at 14 months, and is generally a happy, hyper, smart, loving 7 year old. Other than some issues with low muscle tone (and the resulting abysmal handwriting), her fine and gross motor skills are pretty much on the mark with a typical kid. Her speech is delayed a bit, but she is speaking so well that she is only one standard deviation below normal. That is hard to explain, but basically means she is one to two years behind normal in her receptive and expressive language. That is a far cry from the "small handful" of words we were told to expect. In fact, comparing her to deaf children, she is above the 50th percentile. In her end-of-year testing last year she tested at or above grade level in EVERY SINGLE SUBJECT. We are so amazed by our little girl, and grateful she is doing so much better than we were told to expect.
The cause of her deafness is atretic ear canals, which basically means that she was born without ear canals. They end in a blind pouch right after the outer ear. In January 0f 2007, Dr. Clough Shelton at the University of Utah Hospital corrected her left ear and created an ear canal. The hearing in that ear hasn't been fantastic, and we're not sure why. We were hoping she wouldn't need a hearing aid anymore but it looks like she may. Two weeks ago Dr. Shelton created an ear canal in her right ear, and we are currently in recovery phase. He said that her anatomy was very favorable and the surgery couldn't have gone better, so we're very hopeful. She will have the packing removed in another two weeks so we'll have a better idea what her hearing is then.
She also has a condition called midface hypoplasia, which basically means that the middle part of her face (her maxilla) isn't growing. Her forehead and mandible are growing normally, so she has a serious underbite that is getting worse. I'll write more on this later. She is also growth hormone deficient and requires two shots a day to help her grow. She has severe ADHD and is socially delayed.
She likes reading, swimming (which she can't do this summer because of her surgery - bummer), playing GameCube, playing with friends, going to Grandma's house, learning about superheroes (Daddy is happy about that one), and being outside. She is a precious, loving girl and we adore her.
Ashton is 4 and will be going to preschool next year at the Carmen B. Pingree Center for Children with Autism. He was diagnosed with PDD-NOS about 2 years ago and rediagnosed with high-functioning autism earlier this year. I may be in denial, but sometimes I wonder if the people who diagnosed him are crazy. He definitely has some quirks and I can see some autistic tendencies, but he is so unlike what I consider to be a typically autistic kid that I just have a hard time seeing him in that category. He is very affectionate and loves to hug and snuggle. He is smart and inquisitive and wants to learn as much as he can about the world around him. He loves playing with his sister and goes along with whatever superhero she is obsessing over. He likes playing with other kids, although he has a hard time knowing how to play appropriately. He has a tough time with transition and doesn't handle change very well. He also makes up the funniest words and phrases. Those last things are definitely characteristics of autism, but I don't know if that makes him autistic. But he qualifies for the preschool next year, so we figure it can't hurt and will hopefully help him learn coping skills for the challenges he will have in public school. It's a bummer having both of your kids go to special schools but I guess we just have to be grateful that the schools are available to us. If they had been born 20 years ago, or even 10 years ago, they wouldn't have had these opportunities.
He likes his blanket, Thomas the Tank Engine, Crabby Patties (hamburgers), playing in water, being outside, listening to stories, playing with his sister, playing with his cousin Mason (who lives too far away - sniff sniff), climbing on anything he can find, and singing Spider Pig (thanks to Daddy for that one).
So that's our family. We would have liked to have more children, but because of bizarre medical issues we can't have more. We made two attempts at in-vitro fertilization and neither worked, so we are done. Our family is not what we expected it to be and sometimes that is difficult. But the joys that come from raising Kaitlyn and Ashton are much greater than the difficulties, and we get to have experiences that parents of typical kids never get. We would not have chosen this for our children or our family, but we are so grateful for the children we have and love them more than we ever thought possible.
Wow. Two super long posts. Hopefully my next posts won't be quite so involved!
Fast forward several years, and the Kaitlyn we see now is nothing like we were told to expect. She began talking at 12 months, walking at 14 months, and is generally a happy, hyper, smart, loving 7 year old. Other than some issues with low muscle tone (and the resulting abysmal handwriting), her fine and gross motor skills are pretty much on the mark with a typical kid. Her speech is delayed a bit, but she is speaking so well that she is only one standard deviation below normal. That is hard to explain, but basically means she is one to two years behind normal in her receptive and expressive language. That is a far cry from the "small handful" of words we were told to expect. In fact, comparing her to deaf children, she is above the 50th percentile. In her end-of-year testing last year she tested at or above grade level in EVERY SINGLE SUBJECT. We are so amazed by our little girl, and grateful she is doing so much better than we were told to expect.
The cause of her deafness is atretic ear canals, which basically means that she was born without ear canals. They end in a blind pouch right after the outer ear. In January 0f 2007, Dr. Clough Shelton at the University of Utah Hospital corrected her left ear and created an ear canal. The hearing in that ear hasn't been fantastic, and we're not sure why. We were hoping she wouldn't need a hearing aid anymore but it looks like she may. Two weeks ago Dr. Shelton created an ear canal in her right ear, and we are currently in recovery phase. He said that her anatomy was very favorable and the surgery couldn't have gone better, so we're very hopeful. She will have the packing removed in another two weeks so we'll have a better idea what her hearing is then.
She also has a condition called midface hypoplasia, which basically means that the middle part of her face (her maxilla) isn't growing. Her forehead and mandible are growing normally, so she has a serious underbite that is getting worse. I'll write more on this later. She is also growth hormone deficient and requires two shots a day to help her grow. She has severe ADHD and is socially delayed.
She likes reading, swimming (which she can't do this summer because of her surgery - bummer), playing GameCube, playing with friends, going to Grandma's house, learning about superheroes (Daddy is happy about that one), and being outside. She is a precious, loving girl and we adore her.
Ashton is 4 and will be going to preschool next year at the Carmen B. Pingree Center for Children with Autism. He was diagnosed with PDD-NOS about 2 years ago and rediagnosed with high-functioning autism earlier this year. I may be in denial, but sometimes I wonder if the people who diagnosed him are crazy. He definitely has some quirks and I can see some autistic tendencies, but he is so unlike what I consider to be a typically autistic kid that I just have a hard time seeing him in that category. He is very affectionate and loves to hug and snuggle. He is smart and inquisitive and wants to learn as much as he can about the world around him. He loves playing with his sister and goes along with whatever superhero she is obsessing over. He likes playing with other kids, although he has a hard time knowing how to play appropriately. He has a tough time with transition and doesn't handle change very well. He also makes up the funniest words and phrases. Those last things are definitely characteristics of autism, but I don't know if that makes him autistic. But he qualifies for the preschool next year, so we figure it can't hurt and will hopefully help him learn coping skills for the challenges he will have in public school. It's a bummer having both of your kids go to special schools but I guess we just have to be grateful that the schools are available to us. If they had been born 20 years ago, or even 10 years ago, they wouldn't have had these opportunities.
He likes his blanket, Thomas the Tank Engine, Crabby Patties (hamburgers), playing in water, being outside, listening to stories, playing with his sister, playing with his cousin Mason (who lives too far away - sniff sniff), climbing on anything he can find, and singing Spider Pig (thanks to Daddy for that one).
So that's our family. We would have liked to have more children, but because of bizarre medical issues we can't have more. We made two attempts at in-vitro fertilization and neither worked, so we are done. Our family is not what we expected it to be and sometimes that is difficult. But the joys that come from raising Kaitlyn and Ashton are much greater than the difficulties, and we get to have experiences that parents of typical kids never get. We would not have chosen this for our children or our family, but we are so grateful for the children we have and love them more than we ever thought possible.
Wow. Two super long posts. Hopefully my next posts won't be quite so involved!
Saturday, June 28, 2008
First blog - Introducing Mike and Stephanie
I figured it's time to start our blog, so here goes. My hope is that we will become rich and famous with this blog, so check back often because it will be funny, touching, intelligent, and overall the most life-altering thing you have ever read.
Ha ha.
Quick background on us: We are Mike, Stephanie, Kaitlyn, and Ashton Roach. Mike and I met when we were juniors at Taylorsville High School. Eleven short years later, we finally decided to get married. In between, Mike served an LDS mission to Tacoma Washington, then came home and graduated from the University of Utah with a BA. in History. He became a teacher at Eisenhower Jr. High School, where he still is today.
After high school, I lived in the dorms at the University of Utah for two years, then went to Luxembourg for a year where I studied French and worked as an au pair. Living in Europe was an amazing experience, and I'm so glad I got the chance to play before settling down. After I got back from Europe, I served a mission to Richmond Virginia, then came home and finished school. Mike and I married in the Salt Lake LDS Temple four years later. We celebrated our 10 year anniversary on June 12th, so we've made it to the double digits. I feel like such a grown up.
As I mentioned before, Mike teaches History at Eisenhower Jr. High School. He's been there for around 12 years, but I have a hard time keeping track. In addition to teaching he manages the student body officers and cheerleaders. He is an amazing teacher and the students (well, most of them) love him. He's also working with his stepfather laying hardwood floors. It's a tough job, but I love that he's learning such a useful skill. He doesn't know it yet, but he will be putting his new skill to use at our house very soon. ;o)
I'm a partial stay-at-home mom, meaning that (as all stay-at-home moms know) I do anything BUT stay at home. I was far less busy when I was working full time. Between working with Kaitlyn and Ashton's schools, shuttling them back and forth from doctor's appointments, gathering information for and fighting with the insurance company, dealing with everyday life, going to the gym because I'm DETERMINED to get in better shape, oh - and teaching violin, I'm rarely at home (well, I teach from home but that doesn't count). I love being busy, but sometimes I could use some boredom! And luckily I have some good friends in the neighborhood who give me some diversion once in a while and keep me from going insane.
Just a side note on the gym - I love going, and love the fact that I'm doing something almost entirely for myself. I also love being healthier and stronger and enjoy seeing my progress. My goal is to run the Salt Lake Half Marathon on April 28 2009, St. George in 2010, Los Angeles in 2011, New York in 2012, Seattle Washington in 2013, Richmond Virginia in 2014 (back to my mission stomping ground), whichever is my favorite in 2015 (it will be my qualifying race), and Boston in 2016 (as a present to myself for a significant birthday. I won't say which, but if you can add you can probably figure it out).
This is turning out to be much longer than I thought, so I think I'll give the kids their own blog. Bye for now!
Ha ha.
Quick background on us: We are Mike, Stephanie, Kaitlyn, and Ashton Roach. Mike and I met when we were juniors at Taylorsville High School. Eleven short years later, we finally decided to get married. In between, Mike served an LDS mission to Tacoma Washington, then came home and graduated from the University of Utah with a BA. in History. He became a teacher at Eisenhower Jr. High School, where he still is today.
After high school, I lived in the dorms at the University of Utah for two years, then went to Luxembourg for a year where I studied French and worked as an au pair. Living in Europe was an amazing experience, and I'm so glad I got the chance to play before settling down. After I got back from Europe, I served a mission to Richmond Virginia, then came home and finished school. Mike and I married in the Salt Lake LDS Temple four years later. We celebrated our 10 year anniversary on June 12th, so we've made it to the double digits. I feel like such a grown up.
As I mentioned before, Mike teaches History at Eisenhower Jr. High School. He's been there for around 12 years, but I have a hard time keeping track. In addition to teaching he manages the student body officers and cheerleaders. He is an amazing teacher and the students (well, most of them) love him. He's also working with his stepfather laying hardwood floors. It's a tough job, but I love that he's learning such a useful skill. He doesn't know it yet, but he will be putting his new skill to use at our house very soon. ;o)
I'm a partial stay-at-home mom, meaning that (as all stay-at-home moms know) I do anything BUT stay at home. I was far less busy when I was working full time. Between working with Kaitlyn and Ashton's schools, shuttling them back and forth from doctor's appointments, gathering information for and fighting with the insurance company, dealing with everyday life, going to the gym because I'm DETERMINED to get in better shape, oh - and teaching violin, I'm rarely at home (well, I teach from home but that doesn't count). I love being busy, but sometimes I could use some boredom! And luckily I have some good friends in the neighborhood who give me some diversion once in a while and keep me from going insane.
Just a side note on the gym - I love going, and love the fact that I'm doing something almost entirely for myself. I also love being healthier and stronger and enjoy seeing my progress. My goal is to run the Salt Lake Half Marathon on April 28 2009, St. George in 2010, Los Angeles in 2011, New York in 2012, Seattle Washington in 2013, Richmond Virginia in 2014 (back to my mission stomping ground), whichever is my favorite in 2015 (it will be my qualifying race), and Boston in 2016 (as a present to myself for a significant birthday. I won't say which, but if you can add you can probably figure it out).
This is turning out to be much longer than I thought, so I think I'll give the kids their own blog. Bye for now!
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