Last night I started my daughter, A, back in dance class. She had been going for about a year or so, then stopped at the beginning of last summer because the dance studio didn't do summer classes, only camp sessions. I meant to wait until she got acclimated in her new school in the fall and then sign her up again, but time just got away from me and I never did. Last week I checked back in with the same studio and found that there was a class that not only seemed appropriate, but fit perfectly in our hectic schedule We audited it last night, and I ended up signing her up.
As I was watching her in the class, I had mixed emotions. She had a hard time with many of the moves, partly because they were new to her but mostly because of her balance disorder. Even though she's 5 1/2, she still can't jump, let alone hop on one foot, skip, or do any of the moves that require her to be in the air. But she tries so darned hard, and adapts the moves to what she CAN do. I've never seen a little girl try harder, nor have so much fun. That made me so proud. I get filled with so much PRIDE when I see her try so hard and do so well!
While I have pride, however, I also get a little sad. It's still hard for me sometimes to see her around other kids her age who are typically developing and see how far behind she is. She has come so amazingly far, yet she still has a long way to go, especially with her gross motor skills. So when I see girls her age pirouetting gracefully around the room, I am proud and happy that she is walking and indeed TWIRLING, albeit a bit clumsily and off-balance...and I get a bit sad and wistful for what we'll never have.
While watching her dance, it occurred to me that A and I are similar in some ways. While she has a hard time keeping up with others in dance class, I have a hard time in yoga. I recently started taking yoga, and am still so tight and inflexible that I need to adapt some of my poses. In my class Monday night, for example, we were doing a leg stretch where we were asked to place our hands as far down our leg as we could (while we were lying on our backs with our legs in the air). I could only place my hand as far down as my knee, but others in the class were grabbing their calfs, their ankles, even their toes.
I'm not in a competition with the other class members, and in fact the teacher always reminds us to listen to our bodies and do what we can do and adapt the rest. I do what I can, and know that with practice I will improve. The same goes for A. She can only do what she can do, and it doesn't matter what the other little girls can do. She is doing her best too. We can only work with what we have---I have tight muscles, she has no semi-circular canals, the part of the inner ear that control balance--but we both have drive, spunk, a sense of fun, and a desire to improve.
Showing posts with label balance. Show all posts
Showing posts with label balance. Show all posts
March 7, 2012
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.
November 4, 2010
Curb Appeal
Today my daughter, A, did something she has never done before. She stepped up onto a curb from the street, and then was able to step down. Without help.
I know that for most 4 year olds this is not a big deal, but for A it's a huge achievement. Although she has been walking unassisted since January, she still has a hard time with things that require balance and strength. She has no semi-circular canals, which are the part of the inner ear that control balance (most people have 3 on each side, making 6 total; A has none). She also has low muscle tone and low core strength, despite the years of physical therapy, adapted P.E., and horse therapy that she has done. This affects her in different ways...she always falls backward while going a slide, she can't yet jump, and she doesn't have the strength and balance to step up high on a curb.
Until today.
I know that for most 4 year olds this is not a big deal, but for A it's a huge achievement. Although she has been walking unassisted since January, she still has a hard time with things that require balance and strength. She has no semi-circular canals, which are the part of the inner ear that control balance (most people have 3 on each side, making 6 total; A has none). She also has low muscle tone and low core strength, despite the years of physical therapy, adapted P.E., and horse therapy that she has done. This affects her in different ways...she always falls backward while going a slide, she can't yet jump, and she doesn't have the strength and balance to step up high on a curb.
Until today.
July 11, 2010
My Daughter the Horsewoman
I took A to horseback therapy this past weekend, as we do every Saturday. She has been going for over two years now...she began when she was only 20 months old! I thought it might be nice to do a post about horseback therapy, as it has become such a big part of our lives and a huge help to my daughter.
When A was in the NICU a few people had mentioned that horseback therapy (or hippotherapy) might be a good thing for A. The seed had been planted, and as she grew older I began to research exactly what it is. This is copied and pasted from the American Hippotherapy Association:
When A was in the NICU a few people had mentioned that horseback therapy (or hippotherapy) might be a good thing for A. The seed had been planted, and as she grew older I began to research exactly what it is. This is copied and pasted from the American Hippotherapy Association:
The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting.
Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.
What really got my attention here was the word "balance". A was born without any semi-circular canals. These are small canals that help control balance. A typical person has 6 of these canals (3 in each ear). As far as the MRI could see, A has none. Zero. Zilch. So her balance has always been off, which caused her gross motor skills be be greatly delayed (she didn't start walking until age 3 1/2!) Knowing this, I was eager to try horse therapy as a way to give my daughter any advantage and help I could.
First, I had to find a place to take her. I looked on the NARHA website (North American Riding for the Handicapped Assocation) for a local center, and was pleased to find that there were several in my vicinity. However, most took kids starting at age 5; when I started to look, A was only 12 months old! I was fortunate enough to find a place that was willing to take her, although they wanted me to to wait several months until she got a bit older. 8 months later, at the age of 20 months, A started horse therapy. I should also mention that her pediatrician had to sign off on the paperwork to get her enrolled; horse therapy is not for everyone, and should only be done with a doctor's approval. And I had to go to a tack store to get her a helmet---a pink one, of course!
When A first started on horseback, she was assigned a small pony named Scarlet, a beautiful brown horse. She also had 3 people working with her: one to lead Scarlet, and 2 "sidewalkers", who are people who walk on either side of the horse to help hold A up. They hold onto her thighs, to give her extra stability and to make sure she doesn't fall off the horse. Her first day---actually, her first month--she HATED it! She cried the whole time, signing "all done". I stuck with it, though, and sure enough within in a few weeks she began to tolerate it. Now, over 2 years later, she loves it. She still has the same setup as we always have (she still needs a leader and 2 sidewalkers) but her attitude has changed. I think she really looks forward to going every week.
I am convinced that horse therapy has greatly helped A's balance. It is a lot of work to be on horseback, and she is on for 30-45 minutes each week. She really has to control her posture and balance on Scarlet. She also sometimes helps to "groom" Scarlet, standing next to her (with my supervision, of course) and brushing her hair and mane. Additionally, it has helped expand her language, cognition, and social skills.
I don't know how much longer we will be doing horse therapy. I could see ending in about a year or so...or I can see having her continue indefinitely, into her teens. There are many teens and young adults there that not only take lessons, but help care for the horses themselves. Regardless of how much longer we continue, I am grateful for finding out about horse therapy, and for the undeniable help it has given my baby.
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)
January 18, 2010
Amazing
My daughter did something amazing yesterday.
She walked, stopped, stood relatively still for several seconds, pivoted, and then continued walking.
While most parents would not see this as amazing, especially for a 3 1/2 year old child, I do. You see, my daugher, A, JUST started to walk a few months ago. She took her first wobbly steps a few days before her third birthday, and now, six months later, she is getting better and better each day. She is still not a total independent walker, but my God, she is WALKING!
A has two issues that have held her back from walking the way most typical kids do. First of all, she has no semicircular canals. Semicircular canals are little tubes in the inner ears that help control balance. Most people have 3 in each ear, or 6 total. My daughter, according to MRIs, has none. So, she has a severe balance impairment; it is hard for her to know where she is in space. Other systems have to kick in (brain, visual, etc) but since she has some visual impairment as well, her odds have always been stacked against her.
The second issue is that she has low muscle tone, especially in her trunk. We have done extensive therapies with her: physical therapy (she has had physical therapy since her infant days in the NICU!), occupational therapy, adapted P.E., and horse therapy. All are designed to help her strengthen her core. These therapies, in addition to the day-to-day exercises of wrestling with her brother, sliding and swinging at the park, and just living life has helped to build her strength.
A didn't sit up until she was around 9 months old, and didn't crawl until 19 months old. When I say she has gross motor delays, I'm not talking about a girl who didn't walk until she was 18 months, which is what people usually think of when they hear the term "late walker". I mean DELAY!!
She has been walking quite a bit recently (58 steps is her new record!) but still cannot stand on her own independently, like in the middle of a room.
So the sight of my daughter, age 3 1/2, walking and then STANDING ALMOST STILL, turning, and continuing to walk, was amazing.
That girl is my hero.
She walked, stopped, stood relatively still for several seconds, pivoted, and then continued walking.
While most parents would not see this as amazing, especially for a 3 1/2 year old child, I do. You see, my daugher, A, JUST started to walk a few months ago. She took her first wobbly steps a few days before her third birthday, and now, six months later, she is getting better and better each day. She is still not a total independent walker, but my God, she is WALKING!
A has two issues that have held her back from walking the way most typical kids do. First of all, she has no semicircular canals. Semicircular canals are little tubes in the inner ears that help control balance. Most people have 3 in each ear, or 6 total. My daughter, according to MRIs, has none. So, she has a severe balance impairment; it is hard for her to know where she is in space. Other systems have to kick in (brain, visual, etc) but since she has some visual impairment as well, her odds have always been stacked against her.
The second issue is that she has low muscle tone, especially in her trunk. We have done extensive therapies with her: physical therapy (she has had physical therapy since her infant days in the NICU!), occupational therapy, adapted P.E., and horse therapy. All are designed to help her strengthen her core. These therapies, in addition to the day-to-day exercises of wrestling with her brother, sliding and swinging at the park, and just living life has helped to build her strength.
A didn't sit up until she was around 9 months old, and didn't crawl until 19 months old. When I say she has gross motor delays, I'm not talking about a girl who didn't walk until she was 18 months, which is what people usually think of when they hear the term "late walker". I mean DELAY!!
She has been walking quite a bit recently (58 steps is her new record!) but still cannot stand on her own independently, like in the middle of a room.
So the sight of my daughter, age 3 1/2, walking and then STANDING ALMOST STILL, turning, and continuing to walk, was amazing.
That girl is my hero.
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