My daughter has an IEP at school (Individualized Education Program) which is a legal document that lists all of her needs and how the school is going to help. We have an annual IEP meeting, where all of her therapists and teachers get together to discuss her progress, and we make goals for the following year. Here is where her services are set: deciding which therapies she'll be getting, such as speech therapy and occupational therapy, as well as how many hours of each therapy she'll be getting each week.
Also in these meetings, all classroom adaptations are discussed. For example, because of her vision and hearing issues, she needs to sit in the front of the classroom on the left-hand side. Since her vision AND hearing is better in her right ear and eye, sitting on the left side of the class puts her right eye and ear closer to the teacher. Other adaptations, such as giving her special scissors to use and a bench to put on her her feet for stability, are also brought up here in these IEP meetings.
While she is getting such great support in the classroom, it turns out we're not doing as well at home. This weekend we realized that for years, we've had A sitting in the wrong place at the dinner table! Our seating arrangement has always been me on the left side of the table, with A next to me at my right; across from me is my son, D; and next to D (diagonal from me) is my husband, J. Often at dinner A will ask "what did you say?" and we'll repeat ourselves. Sometimes I even check her hearing aide battery to see if it's still on! It never, EVER occurred to us that she was in the wrong seat! Her "good" ear, the right one, was facing nobody. She needed to be sitting in MY seat, so her right ear would be pointing toward the middle of the table. J noticed this issue this weekend, and it was like a lightbulb going off over our heads.
Oh. My. Goodness.
I feel so bad! How could we not have noticed this error in seating? It's remedied now, so hopefully A will be able to hear more at the dinner table. But gosh---sometimes I wish a professional could come in to our home and point things like this out!
Showing posts with label vision. Show all posts
Showing posts with label vision. Show all posts
January 23, 2012
October 13, 2011
Hooray for Kindergarten!
I just realized I haven't written anything about how my daughter is doing in kindergarten! Usually my blog is half about my family and half about racing; however, these past 6 weeks or so I've been so focused on my races. In the past few weeks, I've completed two triathlons (a sprint and an Olympic distance) and a half marathon and I've completely neglected to write about the part of Grateful Mama's life that makes me a Mama!
My daughter, A, started kindergarten at the end of August. As I wrote on her first day of school, she is in the first of a two-year kindergarten. My school district offers this two-year kindergarten to children who were born in June through November, who would otherwise be the youngest kids in the class. This is not a special ed class; it's 100% mainstream, with all typically-developing kids. Most of the kids in there, including my daughter, can benefit from the extra year in order to develop more social, language and other developmental skills. Although she is in a mainstream class, she does get pulled out for 5 different therapies during the week (30 minutes of physical therapy, 30 minutes of speech therapy, 30 minutes of occupational therapy, 60 minutes of deaf/hard-of-hearing therapy, and 60 minutes of adapted P.E.). I'm so happy that they are giving her all of her services even without being in a special ed class.
School has now been in session for seven weeks. My son, D, is doing great in second grade, as I expected. But my daughter? She's thriving!
My daughter, A, started kindergarten at the end of August. As I wrote on her first day of school, she is in the first of a two-year kindergarten. My school district offers this two-year kindergarten to children who were born in June through November, who would otherwise be the youngest kids in the class. This is not a special ed class; it's 100% mainstream, with all typically-developing kids. Most of the kids in there, including my daughter, can benefit from the extra year in order to develop more social, language and other developmental skills. Although she is in a mainstream class, she does get pulled out for 5 different therapies during the week (30 minutes of physical therapy, 30 minutes of speech therapy, 30 minutes of occupational therapy, 60 minutes of deaf/hard-of-hearing therapy, and 60 minutes of adapted P.E.). I'm so happy that they are giving her all of her services even without being in a special ed class.
School has now been in session for seven weeks. My son, D, is doing great in second grade, as I expected. But my daughter? She's thriving!
- Academically she is exploding. She went to school being able to read a few 3-letter word here or there. Today she can read most 3-letter words without help. She can even spell! We have lots of magnetic letters on our refrigerator that she loves to play with. I can ask her to spell a 3-letter word, like "hat" or "fox" or "bed" and 9/10 times she gets the correct letters and spells the word! Today she came home from school being able to read the words "the", "my" and "see". Being as she is only 7 weeks into her first year of kindergarten, I am very hopeful that she will be a good reader one day.
- On the potty training front, she is mostly trained. I wrote in mid-July that she wasn't potty trained at all. Soon after that, she started to get it. Now, she is accident-free most days, although there are a few days here and there that she comes home from school in new shorts and underwear (I keep a backpack of extra clothes for her in the health aide's office). She also sometimes has accidents at home. But I know many kids in kindergarten have accidents at school, so I'm not worried; I mean, she only trained two months ago!
- She has friends! She seems to be well-liked in the class (as she always was in preschool, too) and has a little group of friends. I've even heard kids say "Oh, there's A, let's go play with her" while we're on the playground in the morning before the bell rings. My heart melts each time I see her walking hand-in-hand with a friend. Of course, her language seems to be way below that of most (but not all) of her peers, but she's obviously able to keep up with them.
- She is getting a bit better with writing some letters and using scissors. This will be an ongoing struggle for her, particularly with her vision issues.
- She is getting so independent! She's been wanting to pick out her own clothes and get dressed by herself; help set the table; help unload the dishwasher; and assist me with various other household chores.
May 29, 2011
Why I Love "American Idol"
Another season of "American Idol" ended this week. I love the show, and have watched it from almost the very beginning (I started watching toward the end of Season 1). Some seasons are boring and hard to watch, but this year was fun and exciting for me. I was super-sad that James Durbin got eliminated, as I thought he should have gone all the way.
I am a huge music fan, and enjoy the contestants' twists on songs I love. I also love the "rags to riches" stories of everyday people getting discovered. Some winners have faded into oblivion (did we ever really expect to hear from Taylor Hicks again?) but some have become super-stars, like Kelly Clarkson and Carrie Underwood. And many, many contestants that didn't take the top prize have done very well. I am a huge Adam Lambert fan, and also love Chris Doughtry.
But there's another reason I love the show. There have been many contestants with various disabilities and challenges, many of which my own daughter, A, struggles with. For example:
Truly inspiring. My daughter will accomplish the same. You may never see her in a recording studio (but who knows!) but I can promise you she will acheive great things. She can do whatever she wants to do.
I am a huge music fan, and enjoy the contestants' twists on songs I love. I also love the "rags to riches" stories of everyday people getting discovered. Some winners have faded into oblivion (did we ever really expect to hear from Taylor Hicks again?) but some have become super-stars, like Kelly Clarkson and Carrie Underwood. And many, many contestants that didn't take the top prize have done very well. I am a huge Adam Lambert fan, and also love Chris Doughtry.
But there's another reason I love the show. There have been many contestants with various disabilities and challenges, many of which my own daughter, A, struggles with. For example:
- Season 8's Scott MacIntyre is blind. Now my daughter isn't blind, but she is a severe vision impairment. She has colobomas in both eyes (gaps on her optic nerves) giving her gaps in her fields of vision.
- Season 4's Anthony Federov had a trachestomy as a child...just like my daughter.
- Season 7's David Archuleta had a paralyzed vocal cord, just like my daughter. His paralysis resolved, while my daughter's hasn't.
- Season 5's Elliot Yamin is 90% deaf in his right ear. My daughter is deaf/hard-of-hearing in both of her ears. By the way, Elliot also has diabetes and is insulin-dependent!
- Season 10's James Durbin has both Asperger's Syndrome and Tourette's Syndrome. My daughter has neither, but I am still so impressed he overcame these challenges to finish in fourth place this season!
Truly inspiring. My daughter will accomplish the same. You may never see her in a recording studio (but who knows!) but I can promise you she will acheive great things. She can do whatever she wants to do.
May 24, 2011
Pre-Kindergarten IEP
Today was A's annual IEP (individualized education program). This time it was a triennial IEP, with her transitioning to kindergarten next year, so a huge battery of tests had been administered over the past few weeks. This was our third IEP with her, and both had gone very well. I was overall pleased with their recommendations last year, except for the fact that they had recommended a Special Day Class, mainly to contain all of her services to one site. Having nixed that, I kept A in her inclusion preschool all year. Seeing all the testing results, I am 100% sure that was the right choice.
Why? Because all of her testing (except for gross motor skills, which we knew would be below average) shows her at the average level.
Let me back up. There were a million people present at the meeting today: the program director, school psychologist, psychologist intern, occupational therapist, physical therapist, vision therapist, deaf/hard-of-hearing therapist, speech therapist, resource specialist, two of her preschool teachers, my husband and myself. Her adapted P.E. therapist and the district nurse were unable to attend, but they had sent their reports.
Most of the people in the room had done testing on A....and as I said, everything puts her in the average range. Academically, she scored in the average range (on two separate tests!) in writing, reading and math! I couldn't believe it....her writing is average! This is the same girl who could barely draw a circle last summer. Now she is writing most of her letters. Her language is in the average range. Her IQ is average! Average is my new favorite word!
Of course, A still has a long way to go. Her gross motor skills are very behind, and she still needs a lot of work on language pragmatics (that is, talking in socialized settings, having conversations, etc). The language is IN her, we just need to help her get it out. But I know that she will get to where we want her to be. Everyone present at the IEP, without exception, talked glowingly about my daughter, about how self-motivated she is and how she continues to make progress without plateau.
Because all of her testing was average, for the first time in our IEP history the words Special Day Class wasn't even brought up! She doesn't need it! She will go to regular, general ed kindergarten next year. Luckily, our school district offers an amazing two-year kindergarten for kids born June-November, who would otherwise be the youngest kids in the class, to give them an extra year of kindergarten, an extra year of growth. This is what I am going to enroll A in....to give her the gift of an extra year. She needs an extra year of growth, both physically and language-wise. Plus, it gives her an extra year at home when it's time for her to graduate high school. Her first year of life was spent in the hospital and doctor's appointments, so we get to make up that year during her teens.
So, she will go to a half-day kindergarten next year, then transition to a full-day kindergarten the following year. These are the therapies she will receive:
30 minutes, once a week, of speech therapy
30 minutes, twice a week, of deaf/hard-of-hearing therapy
30 minutes, once a week, of occupational therapy
30 minutes, once a week, of physical therapy
30 minutes, twice a week, of adapted P.E.
Some of her therapies will be pull-out (meaning they will take her out of the classroom for 1:1 time) and some of her therapies will be push-in (meaning the therapist will work with her in the classroom, which will be great for things like speech). She does not qualify for vision therapy or resource class (although she never has qualified for either of these!) Her qualifying diagnosis will remain "other health issues" as she has so many medical issues, with deaf/hard-of-hearing as a secondary diagnosis.
Another thing I was pleased with is that she qualifies for an FM system, which is a system that will have the teacher wear a microphone around her neck and the sound will transmit directly into her hearing aid. This will be great for her hearing, especially since she'll be in a noisy class with up to 25 other kids.
All in all, I am very pleased. I am beaming as I write this. My daughter is a miracle...and I can't wait to see her thrive next year in elementary school!
Why? Because all of her testing (except for gross motor skills, which we knew would be below average) shows her at the average level.
Let me back up. There were a million people present at the meeting today: the program director, school psychologist, psychologist intern, occupational therapist, physical therapist, vision therapist, deaf/hard-of-hearing therapist, speech therapist, resource specialist, two of her preschool teachers, my husband and myself. Her adapted P.E. therapist and the district nurse were unable to attend, but they had sent their reports.
Most of the people in the room had done testing on A....and as I said, everything puts her in the average range. Academically, she scored in the average range (on two separate tests!) in writing, reading and math! I couldn't believe it....her writing is average! This is the same girl who could barely draw a circle last summer. Now she is writing most of her letters. Her language is in the average range. Her IQ is average! Average is my new favorite word!
Of course, A still has a long way to go. Her gross motor skills are very behind, and she still needs a lot of work on language pragmatics (that is, talking in socialized settings, having conversations, etc). The language is IN her, we just need to help her get it out. But I know that she will get to where we want her to be. Everyone present at the IEP, without exception, talked glowingly about my daughter, about how self-motivated she is and how she continues to make progress without plateau.
Because all of her testing was average, for the first time in our IEP history the words Special Day Class wasn't even brought up! She doesn't need it! She will go to regular, general ed kindergarten next year. Luckily, our school district offers an amazing two-year kindergarten for kids born June-November, who would otherwise be the youngest kids in the class, to give them an extra year of kindergarten, an extra year of growth. This is what I am going to enroll A in....to give her the gift of an extra year. She needs an extra year of growth, both physically and language-wise. Plus, it gives her an extra year at home when it's time for her to graduate high school. Her first year of life was spent in the hospital and doctor's appointments, so we get to make up that year during her teens.
So, she will go to a half-day kindergarten next year, then transition to a full-day kindergarten the following year. These are the therapies she will receive:
30 minutes, once a week, of speech therapy
30 minutes, twice a week, of deaf/hard-of-hearing therapy
30 minutes, once a week, of occupational therapy
30 minutes, once a week, of physical therapy
30 minutes, twice a week, of adapted P.E.
Some of her therapies will be pull-out (meaning they will take her out of the classroom for 1:1 time) and some of her therapies will be push-in (meaning the therapist will work with her in the classroom, which will be great for things like speech). She does not qualify for vision therapy or resource class (although she never has qualified for either of these!) Her qualifying diagnosis will remain "other health issues" as she has so many medical issues, with deaf/hard-of-hearing as a secondary diagnosis.
Another thing I was pleased with is that she qualifies for an FM system, which is a system that will have the teacher wear a microphone around her neck and the sound will transmit directly into her hearing aid. This will be great for her hearing, especially since she'll be in a noisy class with up to 25 other kids.
All in all, I am very pleased. I am beaming as I write this. My daughter is a miracle...and I can't wait to see her thrive next year in elementary school!
April 27, 2011
Surgery Date Set!!!
June 23.
That is the date of my daughter's surgery.
I am over the moon about this. This surgery is to close the stoma (or hole) left from her tracheostomy. My daughter, A had the trach, or breathing tube, in her throat from 4 months old until last July, when it was unexpectedly removed by her ENT at age 4. Since last July, she's had no actual breathing tube, and this alleviated so much stress from me, as now I am able to leave her with someone other than a nurse or my best friend (who was trained in how to care for her) and no longer have to carry around a suction machine, dye trach ties and do the thousands of other things that one must do when your baby has a breathing (and feeding!) tubes. Getting both tubes removed last summer was nothing short of a miracle for us.
Yet, although her trach was removed, the hole in her throat remained. Her ENT wanted to wait a year before closing it, to make sure she really could breathe well without it. A went through this entire past year just fine, even having a few colds and a bout of croup. A few breathing treatments with the nebulizer and she was good to go. So, she's ready to have the hole closed.
Because A has spent virtually her entire life (from age 4 months to present) with a tube or open hole in her throat, giving direct access to her lungs, there has been many things she has never done. Most things involve water; immersion in water, or even water trickling down her trachea, could drown her instantly. So, once she has the surgery and is healed, for the first time EVER A will be able to:
Go in a pool
Take swim lessons
Take a bath with more than one inch of water in it
Have shampoo rinsed from her hair without having to tilt her head back all the way
Have water drip down her face
Take a shower
Go in the ocean
Run through sprinklers
As you can see, this is huge for us. Imagine, being almost 5 years old and never, ever have been in a swimming pool. Or taken a full bath. Before this would have killed her; soon, it will be her delight.
In the same surgery, her opthomologist will also do an eye surgery on her left eye to correct her amblyopia, or lazy eye. Although her left eye is legally blind, with something like 20/200 (or it might be 20/300, I forget) eyesight, it's better than we had previously thought and this should help her even more.
I CANNOT WAIT for this surgery--it will be a one night stay in the hospital, and then a week to heal. Hopefully she'll be healed in time for her 5th birthday, just a week after the surgery.
And I know just where I want to spend her birthday.
Splashing in the local pool.
That is the date of my daughter's surgery.
I am over the moon about this. This surgery is to close the stoma (or hole) left from her tracheostomy. My daughter, A had the trach, or breathing tube, in her throat from 4 months old until last July, when it was unexpectedly removed by her ENT at age 4. Since last July, she's had no actual breathing tube, and this alleviated so much stress from me, as now I am able to leave her with someone other than a nurse or my best friend (who was trained in how to care for her) and no longer have to carry around a suction machine, dye trach ties and do the thousands of other things that one must do when your baby has a breathing (and feeding!) tubes. Getting both tubes removed last summer was nothing short of a miracle for us.
Yet, although her trach was removed, the hole in her throat remained. Her ENT wanted to wait a year before closing it, to make sure she really could breathe well without it. A went through this entire past year just fine, even having a few colds and a bout of croup. A few breathing treatments with the nebulizer and she was good to go. So, she's ready to have the hole closed.
Because A has spent virtually her entire life (from age 4 months to present) with a tube or open hole in her throat, giving direct access to her lungs, there has been many things she has never done. Most things involve water; immersion in water, or even water trickling down her trachea, could drown her instantly. So, once she has the surgery and is healed, for the first time EVER A will be able to:
Go in a pool
Take swim lessons
Take a bath with more than one inch of water in it
Have shampoo rinsed from her hair without having to tilt her head back all the way
Have water drip down her face
Take a shower
Go in the ocean
Run through sprinklers
As you can see, this is huge for us. Imagine, being almost 5 years old and never, ever have been in a swimming pool. Or taken a full bath. Before this would have killed her; soon, it will be her delight.
In the same surgery, her opthomologist will also do an eye surgery on her left eye to correct her amblyopia, or lazy eye. Although her left eye is legally blind, with something like 20/200 (or it might be 20/300, I forget) eyesight, it's better than we had previously thought and this should help her even more.
I CANNOT WAIT for this surgery--it will be a one night stay in the hospital, and then a week to heal. Hopefully she'll be healed in time for her 5th birthday, just a week after the surgery.
And I know just where I want to spend her birthday.
Splashing in the local pool.
January 25, 2011
Helping Her Vision
Today we had a follow-up visit with A's opthomologist. I was eager to see her, as we had two things to discuss. First, there was the reason we had the visit scheduled in the first place: to do a vision test on A's left eye. Our last visit in December showed that A's eye may not be as in bad shape as we had thought it was, and the doctor wanted to do an undilated vision test. Second, I wanted to discuss A's recent falls and how I thought they were directly related to A's new prescription glasses for astigmatism.
The first thing the doctor did was test A's left eye. With her right eye covered, she was able to see letters on a chart at 20/300, possibly at 20/250. Our last visit she tested at 20/200. However, as the letters got smaller A got bored and was done...so it's hard to tell if that is where her vision really is, or if she could see better. Regardless, even a 20/300 is more than we'd previously thought. It's still technically "legally blind", but that's just a term. What that means for my daughter is that her left eye is providing a lot more peripheral vision, and possibly central vision, than we'd thought, and helping her depth perception. Great news!
Next, we discussed the glasses. The doctor agreed that perhaps A wasn't ready for the prescription, and is sending her new glasses back to be have clear, non-prescription lenses put in. She had never heard of a child falling on her forehead due to this prescription before, but she agreed that it seemed the glasses were the culprit. (Of course, I'm sure not many of her patients are also missing their semi-circular canals and have impaired balance to begin with). Easy, peasy.
We then got in to discussing A's options. As A is only 4 1/2, and still technically "plastic" (the doctor's words) with her vision, she would like to try to improve A's eyesight as much as possible. To that end, she is suggesting two things:
1) She wants us to start patching A's "good" eye (her right eye) daily. This will cause A to only use her left eye, thereby strengthening it. Even patching for a few minutes a day will help, although up to a few hours would be optimal. In reality, I think we might be lucky to get an hour in a day. The doctor recommends that A not be walking around while patched (as her depth perception will be severely impacted and she might fall again) and so we have to do it while sitting down. But any time with the patch on will help, the doctor says.
2) The doctor is recommending surgery for A's ambyopia (lazy eye). Her left eye tends to wander at times, although it wanders far less now than it did when she was younger. She thinks that having her left eye always looking central will also help to strengthen the vision in that eye. Also, although it's a much lesser, secondary reason to do surgery, it's cosmetic. The good news is that if we decide to go ahead with the surgery, she can schedule it for the same time that A is having surgery to get her stoma from her tracheostomy closed (she says she schedules with our ENT all the time) so A would only have to be put under anesthesia once.
I'm at a loss as to what to decide about the surgery. I'm sure J and I will have lots of discussions about it. I know it's a common surgery, but it scares me. My own mother had the surgery; our doctor has done hundreds, if not thousands of them. But I just need to make sure it's the right choice for A.
All in all, it was a good visit. We already had our patching session for today; she was reticent at first, but it helped that both D and I put our own patches on. Hopefully we can get this resolved, as I would love to help A maintain and even improve whatever vision she has.
The first thing the doctor did was test A's left eye. With her right eye covered, she was able to see letters on a chart at 20/300, possibly at 20/250. Our last visit she tested at 20/200. However, as the letters got smaller A got bored and was done...so it's hard to tell if that is where her vision really is, or if she could see better. Regardless, even a 20/300 is more than we'd previously thought. It's still technically "legally blind", but that's just a term. What that means for my daughter is that her left eye is providing a lot more peripheral vision, and possibly central vision, than we'd thought, and helping her depth perception. Great news!
Next, we discussed the glasses. The doctor agreed that perhaps A wasn't ready for the prescription, and is sending her new glasses back to be have clear, non-prescription lenses put in. She had never heard of a child falling on her forehead due to this prescription before, but she agreed that it seemed the glasses were the culprit. (Of course, I'm sure not many of her patients are also missing their semi-circular canals and have impaired balance to begin with). Easy, peasy.
We then got in to discussing A's options. As A is only 4 1/2, and still technically "plastic" (the doctor's words) with her vision, she would like to try to improve A's eyesight as much as possible. To that end, she is suggesting two things:
1) She wants us to start patching A's "good" eye (her right eye) daily. This will cause A to only use her left eye, thereby strengthening it. Even patching for a few minutes a day will help, although up to a few hours would be optimal. In reality, I think we might be lucky to get an hour in a day. The doctor recommends that A not be walking around while patched (as her depth perception will be severely impacted and she might fall again) and so we have to do it while sitting down. But any time with the patch on will help, the doctor says.
2) The doctor is recommending surgery for A's ambyopia (lazy eye). Her left eye tends to wander at times, although it wanders far less now than it did when she was younger. She thinks that having her left eye always looking central will also help to strengthen the vision in that eye. Also, although it's a much lesser, secondary reason to do surgery, it's cosmetic. The good news is that if we decide to go ahead with the surgery, she can schedule it for the same time that A is having surgery to get her stoma from her tracheostomy closed (she says she schedules with our ENT all the time) so A would only have to be put under anesthesia once.
I'm at a loss as to what to decide about the surgery. I'm sure J and I will have lots of discussions about it. I know it's a common surgery, but it scares me. My own mother had the surgery; our doctor has done hundreds, if not thousands of them. But I just need to make sure it's the right choice for A.
All in all, it was a good visit. We already had our patching session for today; she was reticent at first, but it helped that both D and I put our own patches on. Hopefully we can get this resolved, as I would love to help A maintain and even improve whatever vision she has.
January 18, 2011
Falls, Blood, Stitches--and Answers?
Yesterday was a very hard day.
I haven't blogged about this, but recently my daughter, A, has been falling. A lot. Flat on her face, right onto her forehead. In fact, she has had 4 falls all within the past 10 days or so.
The first fall was about a week and a half ago. We were outside playing with the neighbors, and she was walking on the sidewalk. All of a sudden she was flat on her face. While there was no blood, she had a HUGE black-and-blue goose egg in the midde of her forehead. I iced the knot down as best I could, and as she seemed ok, didn't think much else about it.
Four days later we were at the supermarket. I grabbed a shopping cart and turned to throw away the trash that was in the cart. In the 5 seconds I was turned, A managed to fall again---right on her forehead. There was a tiny bit of blood, just enough to put a band-aid on. My worry started to grow---why was she falling?
Four days after that, a huge accident happened. It was time to take D to karate. We went into the garage, and the kids got into my minivan (as they do all the time). My back was turned, as I was locking up the door from the garage into the house, when all of a sudden I heard a sickening thud. A had fallen from my minivan, facedown onto the concrete garage floor. I picked her up, and there was blood EVERYWHERE. I saw a huge, deep gash in her forehead, right where the goose egg had been. I left D with a neighbor (J was in Green Bay on business, so I was on my own) and spent 4 1/2 hours at Children's Hospital Emergency Room. A left that night with 6 stitches. They warned me to be extra careful with her---more falls could potentially cause brain damage (as any head injury could).
Well, yesterday, three days after getting stitches, A had yet ANOTHER accident. As it was a holiday, J had the day off, and we decided to go to a museum in Balboa Park. We were standing together trying to figure out what exhibit to go to next when BAM, A tripped over D's shoe and fell right onto her head on the marble floor. We were RIGHT THERE---there is no way we could have been any closer, yet she still fell. I picked her up, and saw that there was blood gushing from her her stitches. We ran to the car and took her back to Children's Hospital Emergency Room, where we spent the next four hours. Her previous 6 stitches had indeed ripped open, and she got 15 stitches time. They layered the stitches---3 on the bottom layer, 5 on the middle layer, and the rest on top.
Needless to say, J and I were thrown for a loop. Sure, A has balance issues. She always has and always will. She was born without semicircular canals, which are the part of the inner ear which help control balance. There are supposed to be 3 on each side, or 6 total. A has none. So balance has always been a problem for her. This is one of the main reasons why she didn't walk until she was 3 1/2....it's difficult for her.
But although she falls from time to time, it's never on her head. She often starts to fall, but catches herself. Or she'll fall on her tush. This is new for her--falling on her forehead, without even putting her arms out to catch herself. We've been racking our brains trying to figure out what's going on. We've even discussed getting her a helmet.
On the way home from the hospital last night, J came up with what we think is the reason: her new glasses!
Back in December, we had a wonderful visit with A's opthomololgist, where we discovered that A may not be legally blind in her left eye after all. In that same visit, her doctor said that A has a slight astigmatism. She told us that if she were a new patient, she wouldn't even suggest a prescription, but since A already wore glasses (non-prescription, just to protect her eyes) and we needed new glasses anyway that we should get them with a prescription for astigmatism. The timing was perfect, and I was excited to get a prescription that could help my daughter's eyesight.
She got her new glasses on January 5. Her first fall was January 6. And then, of course, she's had three subsequent falls.
Coincidence? I don't think so. She has NEVER in her life fallen on her forehead, and now she falls four times within 10 days, right after getting her glasses?
A cursory look online shows that astigmatism is linked to depth perception, which of course affects balance. I remember a few years ago when I got a prescription in my sunglasses--I normally have no prescription at all, and it took me quite some time to get used to them. I had a hard time walking...was scared to walk off curbs because I didn't know where my feet were and I felt distorted. Having had that personal experience, I know that having a new prescription can affect how depth perception. And A is just a little girl...she doesn't have the awareness or language to tell me that her depth perception is off.
So, starting today, she is back in her old non-prescription glasses. I hope that this ends the falls. We go back to her opthomologist next week for an eye exam to test her left eye, so I will discuss this with the doctor then.
In the meantime, I hope that our hypothesis is right. I am sick to my stomach about all A has gone through---all those painful falls, emergency room visits, and 21 stitches total. I am worried about the scarring she might have. And of course I am scared that the glasses AREN'T the reason she's falling and then we'll be back to square one.
But I'm 99% sure. And those glasses are gone for good.
I haven't blogged about this, but recently my daughter, A, has been falling. A lot. Flat on her face, right onto her forehead. In fact, she has had 4 falls all within the past 10 days or so.
The first fall was about a week and a half ago. We were outside playing with the neighbors, and she was walking on the sidewalk. All of a sudden she was flat on her face. While there was no blood, she had a HUGE black-and-blue goose egg in the midde of her forehead. I iced the knot down as best I could, and as she seemed ok, didn't think much else about it.
Four days later we were at the supermarket. I grabbed a shopping cart and turned to throw away the trash that was in the cart. In the 5 seconds I was turned, A managed to fall again---right on her forehead. There was a tiny bit of blood, just enough to put a band-aid on. My worry started to grow---why was she falling?
Four days after that, a huge accident happened. It was time to take D to karate. We went into the garage, and the kids got into my minivan (as they do all the time). My back was turned, as I was locking up the door from the garage into the house, when all of a sudden I heard a sickening thud. A had fallen from my minivan, facedown onto the concrete garage floor. I picked her up, and there was blood EVERYWHERE. I saw a huge, deep gash in her forehead, right where the goose egg had been. I left D with a neighbor (J was in Green Bay on business, so I was on my own) and spent 4 1/2 hours at Children's Hospital Emergency Room. A left that night with 6 stitches. They warned me to be extra careful with her---more falls could potentially cause brain damage (as any head injury could).
Well, yesterday, three days after getting stitches, A had yet ANOTHER accident. As it was a holiday, J had the day off, and we decided to go to a museum in Balboa Park. We were standing together trying to figure out what exhibit to go to next when BAM, A tripped over D's shoe and fell right onto her head on the marble floor. We were RIGHT THERE---there is no way we could have been any closer, yet she still fell. I picked her up, and saw that there was blood gushing from her her stitches. We ran to the car and took her back to Children's Hospital Emergency Room, where we spent the next four hours. Her previous 6 stitches had indeed ripped open, and she got 15 stitches time. They layered the stitches---3 on the bottom layer, 5 on the middle layer, and the rest on top.
Needless to say, J and I were thrown for a loop. Sure, A has balance issues. She always has and always will. She was born without semicircular canals, which are the part of the inner ear which help control balance. There are supposed to be 3 on each side, or 6 total. A has none. So balance has always been a problem for her. This is one of the main reasons why she didn't walk until she was 3 1/2....it's difficult for her.
But although she falls from time to time, it's never on her head. She often starts to fall, but catches herself. Or she'll fall on her tush. This is new for her--falling on her forehead, without even putting her arms out to catch herself. We've been racking our brains trying to figure out what's going on. We've even discussed getting her a helmet.
On the way home from the hospital last night, J came up with what we think is the reason: her new glasses!
Back in December, we had a wonderful visit with A's opthomololgist, where we discovered that A may not be legally blind in her left eye after all. In that same visit, her doctor said that A has a slight astigmatism. She told us that if she were a new patient, she wouldn't even suggest a prescription, but since A already wore glasses (non-prescription, just to protect her eyes) and we needed new glasses anyway that we should get them with a prescription for astigmatism. The timing was perfect, and I was excited to get a prescription that could help my daughter's eyesight.
She got her new glasses on January 5. Her first fall was January 6. And then, of course, she's had three subsequent falls.
Coincidence? I don't think so. She has NEVER in her life fallen on her forehead, and now she falls four times within 10 days, right after getting her glasses?
A cursory look online shows that astigmatism is linked to depth perception, which of course affects balance. I remember a few years ago when I got a prescription in my sunglasses--I normally have no prescription at all, and it took me quite some time to get used to them. I had a hard time walking...was scared to walk off curbs because I didn't know where my feet were and I felt distorted. Having had that personal experience, I know that having a new prescription can affect how depth perception. And A is just a little girl...she doesn't have the awareness or language to tell me that her depth perception is off.
So, starting today, she is back in her old non-prescription glasses. I hope that this ends the falls. We go back to her opthomologist next week for an eye exam to test her left eye, so I will discuss this with the doctor then.
In the meantime, I hope that our hypothesis is right. I am sick to my stomach about all A has gone through---all those painful falls, emergency room visits, and 21 stitches total. I am worried about the scarring she might have. And of course I am scared that the glasses AREN'T the reason she's falling and then we'll be back to square one.
But I'm 99% sure. And those glasses are gone for good.
December 15, 2010
Yet Another Medical Miracle
Yesterday we got an unexpected piece of good news regarding A's eyesight! She has coloboma, which is basically a gap in a part of the eyeball. For A, her coloboma is on the optic nerves of both eyes. What this means is that she likely has fields of vision missing. We don't know for sure WHAT she sees at this point, as she is still too young to tell us. But the assumption, ever since she was diagnosed with the colobomas at about 2 months old in the NICU, is that she definitely has vision impairment in both eyes. We were told that her left eye is worse; that it is legally blind, likely only seeing light and large shapes. So, although her actual EYESIGHT is ok (she is not far-sighted or near-sighted) we keep protective glasses on her at all time, to protect what we have. After all, if something happens to her right eye, all she'd be practically blind. I'm protecting what she has.
Yesterday we went to her opthamologist for her biannual check up. We were first brought back by our doctor's tech, who did an eye chart test (using shapes) with both of A's eyes uncovered. She was easily able to identify all of the shapes going halfway down the chart, and the tech pronounced her vision as 20/30. Very good. We talked about how A's left eye is legally blind, and she told me that although she doesn't see much out of it, whatever she DOES see (light and shapes) likely helps with depth perception. Then she put the dilating drops in A's eyes, and we were sent out to the waiting room for 30 minutes.
When we were called back in to the office, we were seen by the opthamologist herself. She started to examine A's eyes, and she told us that A is getting a bit of astigmatism in both eyes. She said it was very slight, and that if A were a kid just walking in off the street she'd tell us to come back in a year or so. But since A is already wearing protective glasses (and actually needs a new pair because hers are scratched) she wants to put the prescription in the lenses to help her. I felt good about that.
She then started to really peer into A's dilated eyes. I asked how the colobomas looked. Below is our conversation:
Doctor: Well, they look the same. It's funny, though...anatomically her left eye looks healthier than her right eye, but it's actually her worse eye.
Me: How do you KNOW it's worse?
Doctor: Because of what she's telling us.
Me: (feeling confused) Exactly what is she telling you?
Doctor: She can't see anything when we cover up her right eye.
Me: Well, when they test her, both of her eyes are uncovered. They haven't tested her left eye alone in years [actually before she was verbal]. Could we try it again?
Doctor: Sure,I guess so.
The doctor then covered up A's right eye, and switched on the eye chart screen across the room. On the chart was a big letter "D".
"D," say A.
Excuse me? Did my daughter, who is supposedly legally blind in that eye, just identify a LETTER?
The doctor changed the screen to the letter "L".
"L," says A.
I started crying. The doctor was visibly shaken, and was upset with her tech for not testing each eye individually. But this changes everything! I'm not sure WHAT her vision is, but I know it's better than we'd thought!
The doctor now wants to see A at the end of January. She wants us to get the glasses for astigmatism, and then do an undilated vision test. Hopefully after that we'll know more what A is seeing. Patching might be involved at that point (patching her right eye 1-2 hours a day) in order to strengthen the left eye.
Whatever happens, I am so happy. I never, ever suspected we'd get vision news like this. I know that regardless of the news, she will still be severely vision impaired--with gaps on her optic nerves that's to be expected. But it's better than I thought. And that's a miracle.
Yesterday we went to her opthamologist for her biannual check up. We were first brought back by our doctor's tech, who did an eye chart test (using shapes) with both of A's eyes uncovered. She was easily able to identify all of the shapes going halfway down the chart, and the tech pronounced her vision as 20/30. Very good. We talked about how A's left eye is legally blind, and she told me that although she doesn't see much out of it, whatever she DOES see (light and shapes) likely helps with depth perception. Then she put the dilating drops in A's eyes, and we were sent out to the waiting room for 30 minutes.
When we were called back in to the office, we were seen by the opthamologist herself. She started to examine A's eyes, and she told us that A is getting a bit of astigmatism in both eyes. She said it was very slight, and that if A were a kid just walking in off the street she'd tell us to come back in a year or so. But since A is already wearing protective glasses (and actually needs a new pair because hers are scratched) she wants to put the prescription in the lenses to help her. I felt good about that.
She then started to really peer into A's dilated eyes. I asked how the colobomas looked. Below is our conversation:
Doctor: Well, they look the same. It's funny, though...anatomically her left eye looks healthier than her right eye, but it's actually her worse eye.
Me: How do you KNOW it's worse?
Doctor: Because of what she's telling us.
Me: (feeling confused) Exactly what is she telling you?
Doctor: She can't see anything when we cover up her right eye.
Me: Well, when they test her, both of her eyes are uncovered. They haven't tested her left eye alone in years [actually before she was verbal]. Could we try it again?
Doctor: Sure,I guess so.
The doctor then covered up A's right eye, and switched on the eye chart screen across the room. On the chart was a big letter "D".
"D," say A.
Excuse me? Did my daughter, who is supposedly legally blind in that eye, just identify a LETTER?
The doctor changed the screen to the letter "L".
"L," says A.
I started crying. The doctor was visibly shaken, and was upset with her tech for not testing each eye individually. But this changes everything! I'm not sure WHAT her vision is, but I know it's better than we'd thought!
The doctor now wants to see A at the end of January. She wants us to get the glasses for astigmatism, and then do an undilated vision test. Hopefully after that we'll know more what A is seeing. Patching might be involved at that point (patching her right eye 1-2 hours a day) in order to strengthen the left eye.
Whatever happens, I am so happy. I never, ever suspected we'd get vision news like this. I know that regardless of the news, she will still be severely vision impaired--with gaps on her optic nerves that's to be expected. But it's better than I thought. And that's a miracle.
September 27, 2010
Some Assembly Required
When my daughter, A, now age 4, came home from twelve weeks in the NICU, she also came home with a g-tube (feeding tube) in her tummy. It came with a lot of equipment (pump, bags, IV pole, syringes, etc) and required a lot of care (cleaning the site, putting gauze around it to soak up leakage, etc). My mother remarked that A came with "some assembly required".
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
August 18, 2010
A Few Steps Back: OT Eval
Although I have been feeling so good about A's progress these days (walking! talking! no feeding tube! no breathing tube!) I have become more and more concerned about her writing skills. Although she is now four years old, she is not writing. Hardly at all. And I'm not just complaining that she isn't writing her letters; I know a lot of children her age can't. What worries me is she can't draw even simple shapes, like a circle, nor can she do simple line tasks like follow a very easy maze. I know I compare her unfairly to her older brother, D, who is a boy-genius (was reading at age three, was able to write legibly at age four) but I also have seen what other children her age are able to write when I visit her preschool class. I have no doubt she is delayed in this area. And with A entering kindergarten in two years (and a pre-K program in one year) I wanted to see what we could do to help her now.
When I took her last month for her four year check up, I asked the pediatrician for a referral for an occupational therapy (OT) evaluation. He told me that most insurance companies don't pay for OT for writing skills (they don't consider it necessary) but that they WOULD pay for an evaluation. I figured I'd get the medically-based evaluation, at Children's Hospital, and if they thought she really needed services I would ask her to be evaluated for OT through the school district (where she already receives speech therapy, physical therapy, adapted physical education, and will soon start deaf/hard-of-hearing therapy).
I should backtrack and disclose that A WAS in OT before. She had OT since her days in the NICU, and was discharged last fall, at the age of three. However, her OT goals were soley focused on feeding. Per her OT therapist, A's fine motor skills were great. And they are! She has always been able to hold a pencil correctly (even at the age of two!), build a tower of blocks, and string beads. I'm not saying that she's perfect; surely there are fine motor skills that can be improved upon. But they have always been good. A's OT issue was eating, and once she was eating and drinking enough that we were able to stop using her feeding tube, we were discharged.
So the thought of going BACK to OT is disheartening, but we went to the evaluation nonetheless. And I'm glad we did. A did great on most of the fine motor tasks (except for being able to use scissors), but had a hard time doing the writing tasks asked of her (ie drawing shapes, tracing lines, etc). She did surprise me by being able to correctly fill in the eyes, nose, mouth, hands and feet on a stick figure, but other than that her writing/drawing skills were not good. Not good at all.
The therapist strongly feels that her inability to write is largely based on her vision issues. A has coloboma in both eyes; that is, she has a small hole on each of her optic nerves limiting vision. We don't know for sure, since A isn't able to tell us yet, but her opthamologist thinks that A is legally blind in her left eye (she probably only sees shapes and light in that eye) and while her right eye is much better, she may have fields of vision missing there. A wears non-prescription glasses (no prescription because she is not near- or far-sighted) in order to protect her right eye. If something happened to it accidentally, she'd be virtually blind. With so much limited vision, A may not actually be SEEING what she needs to write or copy!
The OT still has to write up her report and submit it, but she told me she is going to recommend coming every other week for a few months "to give us some tools". I am considering this good news; surely if A was in terrible shape she's recommend coming in weekly for a longer period of time. The good news is that insurance may pay for it after all; A isn't able to button a button or do a few other dressing skills, and the OT said that insurance usually pays for OT if it includes self-help issues. So we'll see. If not, I'll pursue the school route.
In the meantime, the OT gave us some good tips to try. She told us to have her write at an easel, where she can see the shapes vertically in front of her (I tried this today and still nothing). She recommended playing games like "I Spy" where she has to really focus her vision. Having A color in coloring books, rather than on plain white paper, may help her color in a small area. Finally, things like lacing, tracing, and finger play games may be helpful.
I can only hope that we are intervening in time, and that A can overcome this latest challenge. She can recognize her shapes, letters and numbers, so I know she SEES things on the paper. It's just writing that is hard for her. I guess if worst comes to worst, and she is never able to write or draw, this is the best time for that; in this day and age, there are so many adapted technologies that she can "write" with (laptops, iPads, texting, etc) so it wouldn't be the end of the world. But of course, like all parents, I want her to be as typical as possible, and this means being able to write whatever is age-appropriate for her to do so.
When I took her last month for her four year check up, I asked the pediatrician for a referral for an occupational therapy (OT) evaluation. He told me that most insurance companies don't pay for OT for writing skills (they don't consider it necessary) but that they WOULD pay for an evaluation. I figured I'd get the medically-based evaluation, at Children's Hospital, and if they thought she really needed services I would ask her to be evaluated for OT through the school district (where she already receives speech therapy, physical therapy, adapted physical education, and will soon start deaf/hard-of-hearing therapy).
I should backtrack and disclose that A WAS in OT before. She had OT since her days in the NICU, and was discharged last fall, at the age of three. However, her OT goals were soley focused on feeding. Per her OT therapist, A's fine motor skills were great. And they are! She has always been able to hold a pencil correctly (even at the age of two!), build a tower of blocks, and string beads. I'm not saying that she's perfect; surely there are fine motor skills that can be improved upon. But they have always been good. A's OT issue was eating, and once she was eating and drinking enough that we were able to stop using her feeding tube, we were discharged.
So the thought of going BACK to OT is disheartening, but we went to the evaluation nonetheless. And I'm glad we did. A did great on most of the fine motor tasks (except for being able to use scissors), but had a hard time doing the writing tasks asked of her (ie drawing shapes, tracing lines, etc). She did surprise me by being able to correctly fill in the eyes, nose, mouth, hands and feet on a stick figure, but other than that her writing/drawing skills were not good. Not good at all.
The therapist strongly feels that her inability to write is largely based on her vision issues. A has coloboma in both eyes; that is, she has a small hole on each of her optic nerves limiting vision. We don't know for sure, since A isn't able to tell us yet, but her opthamologist thinks that A is legally blind in her left eye (she probably only sees shapes and light in that eye) and while her right eye is much better, she may have fields of vision missing there. A wears non-prescription glasses (no prescription because she is not near- or far-sighted) in order to protect her right eye. If something happened to it accidentally, she'd be virtually blind. With so much limited vision, A may not actually be SEEING what she needs to write or copy!
The OT still has to write up her report and submit it, but she told me she is going to recommend coming every other week for a few months "to give us some tools". I am considering this good news; surely if A was in terrible shape she's recommend coming in weekly for a longer period of time. The good news is that insurance may pay for it after all; A isn't able to button a button or do a few other dressing skills, and the OT said that insurance usually pays for OT if it includes self-help issues. So we'll see. If not, I'll pursue the school route.
In the meantime, the OT gave us some good tips to try. She told us to have her write at an easel, where she can see the shapes vertically in front of her (I tried this today and still nothing). She recommended playing games like "I Spy" where she has to really focus her vision. Having A color in coloring books, rather than on plain white paper, may help her color in a small area. Finally, things like lacing, tracing, and finger play games may be helpful.
I can only hope that we are intervening in time, and that A can overcome this latest challenge. She can recognize her shapes, letters and numbers, so I know she SEES things on the paper. It's just writing that is hard for her. I guess if worst comes to worst, and she is never able to write or draw, this is the best time for that; in this day and age, there are so many adapted technologies that she can "write" with (laptops, iPads, texting, etc) so it wouldn't be the end of the world. But of course, like all parents, I want her to be as typical as possible, and this means being able to write whatever is age-appropriate for her to do so.
June 6, 2010
Bittersweet Updates
Wow, I haven't posted in a week. This past week has been very bittersweet mixed with some good news.
First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.
However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.
Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.
On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.
Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!
All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.
First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.
However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.
Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.
On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.
Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!
All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.
January 23, 2010
My daughter's medical issues
I don't want this blog to be entirely about my miraculous daughter (although believe me, she gives me enough material to do so!) However, I would be remiss if I didn't list her medical issues. I don't know who might be reading this, and for those of you who don't know me personally, you might want to know what we, and our daughter, A, have been dealing with for the last 3 1/2 years.
Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.
A's list of medical issues:
1) bilateral cleft lip (repaired February 2007)
2) patent ductus arterious (heart defect) (repaired July 2006)
3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)
4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)
5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)
6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)
7) cochleas in both ears missing a spiral
8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)
9) just a thread of an auditory nerve in her left ear
10) right aortic arch (yes, her aorta arches to the right, not the left!)
11) paralyzed vocal chord
12) tracheomalacia (seems to have resolved)
13) very narrow airway
14) paraesophageal hernia
15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)
16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)
17) cleft in her upper right gum
18) extra upper tooth (!)
19) low muscle tone
20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)
Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.
A's list of medical issues:
1) bilateral cleft lip (repaired February 2007)
2) patent ductus arterious (heart defect) (repaired July 2006)
3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)
4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)
5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)
6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)
7) cochleas in both ears missing a spiral
8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)
9) just a thread of an auditory nerve in her left ear
10) right aortic arch (yes, her aorta arches to the right, not the left!)
11) paralyzed vocal chord
12) tracheomalacia (seems to have resolved)
13) very narrow airway
14) paraesophageal hernia
15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)
16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)
17) cleft in her upper right gum
18) extra upper tooth (!)
19) low muscle tone
20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)
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