Today we had a beautiful day of sunshine and it finally feels like summer has arrived. The only problem is that Taylor does not like the heat. We saw this in Hawaii and she has had a similar reaction to our few hot days. She's not overly fussy, but has a general expression of disdain. We tried putting her in the pool yesterday and she did not like it one bit - even though she was wearing her new pink tankini and matching hat. She started off whining, which escalated to a complete shriek when she was splashed by other kids. Her total pool time was less than 5 minutes, and getting out of her cute, wet swimsuit was quite tramatic. She loves the bath, so it's either the colder water or many shrieking/splashing children that she doesn't like. We'll keep trying and find out.
Tonight - she was precious. For the first time, we saw her totally crack up at a mirror. She was smiling at herself and touching the mirror, as if she were thinking "who is that cute baby?" It's another great social sign that we love to see as an indicator of her cognitive potential. She also was cracking up at Lauren tonight. She often will lay in bed with Lauren while I read Lauren her bedtime stories and tonight, she just giggled and giggled at Lauren, who was giggling right back. In my haste to watch the Olympic Track Trials I was trying to hurry through book time and then realized - "Treasure This Moment" - these are the moments that are so special and make parenting such a joy. Both girls were so cute and so sweet and I hope this will be the first of many special nightime giggles that they will share over the years.
Saturday, June 28, 2008
Wednesday, June 25, 2008
Bring on the spirit
Taylor had physical therapy yesterday and a fun time was not had by all. Even though she had just woken up from a nap, Taylor was well, in a word, grumpy. She was not thrilled to do her exercises and Sarah had to work hard to keep her motivated.
Like last time, the focus was on sitting, tummy time, and hand motor skills. She started off with sitting and had pretty good balance. If her hands could catch her and help her balance, I really think she'd be sitting soon. She was able to hold her balance for awhile, even while holding a toy in both hands - which Sarah deems a "complex skill." Sarah is helping her practice placing her hands on the ground to begin catching her weight. We're also working on making sure Taylor's legs are bent while she sits - she has started to straighten them while sitting, which apparently is a bad habit.
Poor Taylor cried like a fish out of water when Sarah had her do tummy time, even when we pulled out her magic tummy time surfboard (which she usually tolerates). She just wasn't into it. We quickly moved on to hand motor skills, where she gets to lie on her back. We're seeing improvement here, which is great. She held link toys at the same time with both hands, reached for a toy with her right hand, and practiced reaching her feet. She also practiced sitting and tummy time on the bouncy ball.
Unfortunately, Taylor poops out after about 30 minutes and the session is supposed to be an hour. After it was clear that Taylor was done with Sarah, I tried to get her to do some of the exercises with Sarah's verbal coaching and we were able to make it the full hour, with some rests. I asked Sarah if we could break her therapy into two shorter sessions each week until she builds up more stamina. She said we could, but recommended that we wait a few more weeks to see if Taylor builds up her stamina. David and I discussed it and we think the key really is for us to seize the moments that Taylor is alert and happy at home for her workouts. Her schedule is still unpredictable enough that it is hard to know if she'll be in prime condition Tuesdays at 11am. We try to help the stars align, but babies are babies, so continuous work-outs through-out the day is probably our best bet for now. Thankfully, Julie (our nanny) is also great about working with and playing with Taylor.
It's interesting - we're starting to see more "spirit" in Taylor - and I love it. We, and everyone else, have always remarked about what a mellow, easy baby Taylor has been. Now that we know she has a few challenges, I'm thrilled to see more spirit in her - whether it's crying when I set her down and disappear out of her site (normal separation anxiety for her age), appearing irritated at Sarah and then laughing for me within seconds (normal parental recognition and preference for her age), or beginning to assert her opinion. Tonight, as I tried to place her in her swing (which she usually loves) to make dinner, she arched her back in defiance - as in "No mommy!". I was surprised, because she's never done that, but thrilled. Behavior that might be frustrating in other contexts is thrilling for me.
Tonight I asked the kids what they love the most about Taylor. Lauren said she couldn't say just one thing because there were so many. Those two really do have a special bond. Taylor just beams when Lauren talks to her. Jacob said he loved Taylor "up to heaven and back" - a variation of the "Guess How Much I Love You" book. I agree with Lauren - I can't say exactly why I love Taylor - I just do - from the bottom to the top of my heart. And I agree with Jacob - because you really can't say it any more fully than "I love you up to heaven and back."
Like last time, the focus was on sitting, tummy time, and hand motor skills. She started off with sitting and had pretty good balance. If her hands could catch her and help her balance, I really think she'd be sitting soon. She was able to hold her balance for awhile, even while holding a toy in both hands - which Sarah deems a "complex skill." Sarah is helping her practice placing her hands on the ground to begin catching her weight. We're also working on making sure Taylor's legs are bent while she sits - she has started to straighten them while sitting, which apparently is a bad habit.
Poor Taylor cried like a fish out of water when Sarah had her do tummy time, even when we pulled out her magic tummy time surfboard (which she usually tolerates). She just wasn't into it. We quickly moved on to hand motor skills, where she gets to lie on her back. We're seeing improvement here, which is great. She held link toys at the same time with both hands, reached for a toy with her right hand, and practiced reaching her feet. She also practiced sitting and tummy time on the bouncy ball.
Unfortunately, Taylor poops out after about 30 minutes and the session is supposed to be an hour. After it was clear that Taylor was done with Sarah, I tried to get her to do some of the exercises with Sarah's verbal coaching and we were able to make it the full hour, with some rests. I asked Sarah if we could break her therapy into two shorter sessions each week until she builds up more stamina. She said we could, but recommended that we wait a few more weeks to see if Taylor builds up her stamina. David and I discussed it and we think the key really is for us to seize the moments that Taylor is alert and happy at home for her workouts. Her schedule is still unpredictable enough that it is hard to know if she'll be in prime condition Tuesdays at 11am. We try to help the stars align, but babies are babies, so continuous work-outs through-out the day is probably our best bet for now. Thankfully, Julie (our nanny) is also great about working with and playing with Taylor.
It's interesting - we're starting to see more "spirit" in Taylor - and I love it. We, and everyone else, have always remarked about what a mellow, easy baby Taylor has been. Now that we know she has a few challenges, I'm thrilled to see more spirit in her - whether it's crying when I set her down and disappear out of her site (normal separation anxiety for her age), appearing irritated at Sarah and then laughing for me within seconds (normal parental recognition and preference for her age), or beginning to assert her opinion. Tonight, as I tried to place her in her swing (which she usually loves) to make dinner, she arched her back in defiance - as in "No mommy!". I was surprised, because she's never done that, but thrilled. Behavior that might be frustrating in other contexts is thrilling for me.
Tonight I asked the kids what they love the most about Taylor. Lauren said she couldn't say just one thing because there were so many. Those two really do have a special bond. Taylor just beams when Lauren talks to her. Jacob said he loved Taylor "up to heaven and back" - a variation of the "Guess How Much I Love You" book. I agree with Lauren - I can't say exactly why I love Taylor - I just do - from the bottom to the top of my heart. And I agree with Jacob - because you really can't say it any more fully than "I love you up to heaven and back."
Monday, June 23, 2008
Summer Fun
I'm realizing the last few blogs have been heavy on science and light on fun, so today is dedicated to fun. We love summer! We're so enjoying going to the beach club, pool, and park, and bike riding, chalk drawing, and being outside. The big kids are truly having a blast and Taylor - bless her - is going along for the ride. I found her a pair of small pink sunglasses (with rhinestones of course) to wear when she is outside. If the light bothers her, the sunglasses can only help. She doesn't seem to mind them on her face.
Taylor has been practicing new tricks this week. Her hand coordination is improving - slowly but surely. She's now reaching for the spoon when I feed her and we've both been splattered with carrots or sweet potatoes a few times when she makes contact. Her movement is still jerky, but it's great that she's making the effort and that she's successful at reaching for an object. She also nearly rolled from her back to her tummy the other day. She was eyeing her binky, which was just over her shoulder and she nearly rolled over. She's enjoying tummy time a bit more - particularly if she's resting on your tummy or using her new surfboard. Her Nana bought her a cool new mat shaped like a surfboard that has a little pad that helps prop her up, and cool squishy fish for her to look at. All in all, we're playing with her a lot more and any improvement is exciting.
Taylor also turned 10 months yesterday. It's amazing that she is nearing the one year celebration. So many people have loved her this year and we're so thankful for all of you. Our big goal over the next few months is working on increasing her food intake (from pure baby food and formula to at least a few solids) so she can enjoy birthday cake on her big day.
On a sadder note, Jacob's fish, Fish Tank, had a very short life at the Gurry house. In what might be a record for shortest pet lifespan (about one week), Fish Tank went belly up yesterday. We're sticking with the "he's resting" story and hopefully he will be secretly replaced tomorrow. Now you know why we don't have other pets.
So nothing major to report today, just lots of fun lately and happy the sun has come out on occasion. We hope you're enjoying the summer fun too....
Friday, June 20, 2008
Vision Therapist
Yesterday we met with the vision therapist, Mary Ellen. It was a really interesting meeting and we are becoming more familiar with yet another intricacy of the brain. Taylor's vision is difficult to assess. Dr. Cowan was concerned that the way Taylor responds to visual cues (toys, etc.) was sluggish or inefficient. Since the opthamologist has confirmed that her eyeballs are fine and her cortex (part of the brain that controls vision) is normal on her MRI, the pathway between her eyeball and cortex is inefficient - a likely result of her missing corpus callosum. Dr. Cowan said it's too early to know if she has immature vision, or abnormal - another "wait and see" game. This can be called cortical vision impairment or delayed maturation of the eyes. The severity of Taylor's visual condition is unknown.
The vision therapist is supposed to help us help Taylor improve her vision. Mary Ellen was very nice and was very complimentary about Taylor. She was really pleased with how alert and social (smiling at parents, stranger awareness, babbling, etc) Taylor is and said those were very good signs in her experience. She explained that her job is to help Taylor track objects more robustly and efficiently. We want her to look at objects when they're in her hands (she rarely does now) and shift her gaze when different people are speaking (she does this at times now).
One of the most interesting things was realizing that Taylor is sensitive to light. We had never realized this. Mary Ellen remarked about how bright our family room is (lots and lots of windows and french doors) and asked if Taylor seemed to mind. We hadn't noticed. After a few exercises with Taylor - trying to get her to track different toys with her eyes, follow a flashlight, etc. - we moved upstairs to Taylor's room, shut her blinds and turned off her light. Her room was lit, but much darker than our family room. She tracked the objects much, much better with the different lighting.
Mary Ellen worked on assessing Taylor using the Carolina Curriculum and basically tried to get Taylor to focus on a variety of objects - different colors, shapes, textures, sounds, etc. We learned that more contrast across objects (in a fairly dark room and shine a flashlight on a toy) really helps Taylor respond. She also responds well to red, yellow, and green toys. It also works well to use a black screen behind a toy to reduce clutter. All of these techniques are new tools we will use to help Taylor see better.
We will meet with Mary Ellen every other week for an hour. She was very nice and we learned a lot. This is an area we'll also explore more to see if there are other treatments we should consider. Mary Ellen left us with a few positive thoughts - she thinks Taylor shows good potential because she is alert and social. We're fortunate that Taylor really responds well to faces and voices. Mary Ellen described that some children with this condition don't like looking at faces because they are too complex - this would be really hard. We're fortunate that we know without a doubt that Taylor knows, and loves, her family.
The vision therapist is supposed to help us help Taylor improve her vision. Mary Ellen was very nice and was very complimentary about Taylor. She was really pleased with how alert and social (smiling at parents, stranger awareness, babbling, etc) Taylor is and said those were very good signs in her experience. She explained that her job is to help Taylor track objects more robustly and efficiently. We want her to look at objects when they're in her hands (she rarely does now) and shift her gaze when different people are speaking (she does this at times now).
One of the most interesting things was realizing that Taylor is sensitive to light. We had never realized this. Mary Ellen remarked about how bright our family room is (lots and lots of windows and french doors) and asked if Taylor seemed to mind. We hadn't noticed. After a few exercises with Taylor - trying to get her to track different toys with her eyes, follow a flashlight, etc. - we moved upstairs to Taylor's room, shut her blinds and turned off her light. Her room was lit, but much darker than our family room. She tracked the objects much, much better with the different lighting.
Mary Ellen worked on assessing Taylor using the Carolina Curriculum and basically tried to get Taylor to focus on a variety of objects - different colors, shapes, textures, sounds, etc. We learned that more contrast across objects (in a fairly dark room and shine a flashlight on a toy) really helps Taylor respond. She also responds well to red, yellow, and green toys. It also works well to use a black screen behind a toy to reduce clutter. All of these techniques are new tools we will use to help Taylor see better.
We will meet with Mary Ellen every other week for an hour. She was very nice and we learned a lot. This is an area we'll also explore more to see if there are other treatments we should consider. Mary Ellen left us with a few positive thoughts - she thinks Taylor shows good potential because she is alert and social. We're fortunate that Taylor really responds well to faces and voices. Mary Ellen described that some children with this condition don't like looking at faces because they are too complex - this would be really hard. We're fortunate that we know without a doubt that Taylor knows, and loves, her family.
Wednesday, June 18, 2008
Physical Therapy report
Taylor had her second physical therapy appointment yesterday. With most things, I'm learning that I'm secretly hoping for the silver bullet, and realizing there probably isn't one. This is going to be a slow journey and every success needs to be appreciated.
Right now Taylor is working on her hand motor skills, sitting and tummy time. The physical therapy exercises aren't anything amazing - a lot of what we might have done anyway - but they are the right things for Taylor and we're learning a lot about the importance of small nuances. For example, Taylor needs help with small skills that we don't even remember Lauren and Jacob learning - they just naturally started reaching for toys for example.
As Taylor's neurological pathways develop though, even small skills are a victory. Her motor skills in her hands are most delayed, so we are focusing on that a lot. We are working on helping her arms reach for toys, holding toys near her hand so she can practice grasping, bringing her hands together to hold the same toy, and passing a toy from one hand to the other. We're beginning to see a few small wins - she will grasp onto a toy if you hold it near her hand now (before we would have to open her hand and place it on the toy). Once she grasps the toy, she loves to shake it or wave it around. The fine motor skill required to reach the toy is now the challenging part for her. She also has started reaching for the spoon when I feed her - these are all good signs that she's learning. Her right arm is much stronger than the left, so we're working extra hard on her left side.
Taylor also practiced sitting and she's definitely getting stronger. She also did a new trick and attempted to put her hands down to catch herself when she started to tip over. The hands affect all sorts of skills - typically she'll just start to tip when she's sitting and she doesn't have the arm control to catch herself, so this skill is really important. She also likes to sit on an exercise ball and bounce (she has assistance of course) to practice her balance and roll on the exercise ball on her tummy (sort of like tummy time). She practiced lifting up on her arms during tummy time and this is definitely her least favorite exercise. Unfortunately the hour segment is really long for her and she was too tired after 40 minutes to keep going. The exercises are really tiring for her, so we're working on her stamina.
So that's physical therapy - no silver bullet - but the right focus. We have our first meeting with the vision specialist from the Boyer Clinic tomorrow and I'm really curious to see what she has to say about Taylor's vision and therapy we can do to improve it. Somehow, we have to improve the pathways between Taylor's eye and the cortex of her brain (part of the brain that processes vision). If we can make progress on this front, it could help Taylor in so many ways.
We've had a lot of fun the past few days seeing lots of friends. We had dear friends from Hawaii in town and we had a great time catching up. The kids had a blast playing. Lauren and Jacob are also adjusting to life without preschool since we're now on summer break. Taylor usually enjoys the activity, but every now and then, I think she's ready for some peace and quiet.
Tonight, Lauren shared that she wants to be a "movie star, fingernail painter, swim teacher, clothing store worker and a rock star" when she grows up. Jacob has narrowed it down to "policeman, baseball player and Troy from High School Musical." I love that kids don't blink at dreaming big. I hope Taylor dreams equally big when she is their age.
I read a quote today from Sarah Ban Breathnach, the author of the Simple Abundance books. It resonated with me, so thought I would share:
"We have so much. All we have is all we need. All we need is the awareness of how blessed we really are."
Right now Taylor is working on her hand motor skills, sitting and tummy time. The physical therapy exercises aren't anything amazing - a lot of what we might have done anyway - but they are the right things for Taylor and we're learning a lot about the importance of small nuances. For example, Taylor needs help with small skills that we don't even remember Lauren and Jacob learning - they just naturally started reaching for toys for example.
As Taylor's neurological pathways develop though, even small skills are a victory. Her motor skills in her hands are most delayed, so we are focusing on that a lot. We are working on helping her arms reach for toys, holding toys near her hand so she can practice grasping, bringing her hands together to hold the same toy, and passing a toy from one hand to the other. We're beginning to see a few small wins - she will grasp onto a toy if you hold it near her hand now (before we would have to open her hand and place it on the toy). Once she grasps the toy, she loves to shake it or wave it around. The fine motor skill required to reach the toy is now the challenging part for her. She also has started reaching for the spoon when I feed her - these are all good signs that she's learning. Her right arm is much stronger than the left, so we're working extra hard on her left side.
Taylor also practiced sitting and she's definitely getting stronger. She also did a new trick and attempted to put her hands down to catch herself when she started to tip over. The hands affect all sorts of skills - typically she'll just start to tip when she's sitting and she doesn't have the arm control to catch herself, so this skill is really important. She also likes to sit on an exercise ball and bounce (she has assistance of course) to practice her balance and roll on the exercise ball on her tummy (sort of like tummy time). She practiced lifting up on her arms during tummy time and this is definitely her least favorite exercise. Unfortunately the hour segment is really long for her and she was too tired after 40 minutes to keep going. The exercises are really tiring for her, so we're working on her stamina.
So that's physical therapy - no silver bullet - but the right focus. We have our first meeting with the vision specialist from the Boyer Clinic tomorrow and I'm really curious to see what she has to say about Taylor's vision and therapy we can do to improve it. Somehow, we have to improve the pathways between Taylor's eye and the cortex of her brain (part of the brain that processes vision). If we can make progress on this front, it could help Taylor in so many ways.
We've had a lot of fun the past few days seeing lots of friends. We had dear friends from Hawaii in town and we had a great time catching up. The kids had a blast playing. Lauren and Jacob are also adjusting to life without preschool since we're now on summer break. Taylor usually enjoys the activity, but every now and then, I think she's ready for some peace and quiet.
Tonight, Lauren shared that she wants to be a "movie star, fingernail painter, swim teacher, clothing store worker and a rock star" when she grows up. Jacob has narrowed it down to "policeman, baseball player and Troy from High School Musical." I love that kids don't blink at dreaming big. I hope Taylor dreams equally big when she is their age.
I read a quote today from Sarah Ban Breathnach, the author of the Simple Abundance books. It resonated with me, so thought I would share:
"We have so much. All we have is all we need. All we need is the awareness of how blessed we really are."
Sunday, June 15, 2008
Neurology - part two - and Father's Day
Well, since I last wrote on Tuesday night we've had a flurry of activity. My mom and sister left on Friday, following Lauren's graduation from her precious preschool. We went to Whidbey Island yesterday to relax and enjoy some sunshine (finally!) and celebrated Father's Day with David's parents. Today, we had a great Father's Day in Seattle - including a trip to the pool, lots of play time, US Open watching, and the big capper - the introduction of two fish to our family. Lauren and Jacob have persistently wanted a pet for sometime and we finally caved - although they're pretty tame pets.
I haven't had the opportunity to update the blog with some interesting news from Dr. Cowan, Taylor's neurologist. He called the day after her appointment and said he had studied her MRI further and researched, and he wanted to clarify that he doesn't think she has Septo-Optic Dysplasia. It's a fine line since so many of the conditions overlap, but since her optic nerve is fine and she doesn't have endocrinology issues, he thinks she has "agenisis (or absence) of the corpus callosum" - which is simply part of her brain is missing. The septum pellucidum is actually part of the corpus callosum, so we can simplify the description of her condition. He again encouraged us to not focus too much on terminology, and focus on helping her symptoms (namely - motor skills and vision therapy at this point). He really is such a nice man and I appreciated the house call and clarification. So, we may over time look for another expert that focuses on this specific condition, but we're learning that our energy is best focused on helping Taylor's symptoms so her brain can learn new pathways.
Some have asked what agenisis of the corpus callosum means, and basically it means that she was born without the part of her brain that connects the right and left hemispheres. While the most efficient connection is not there, the brain is miraculous and will often develop new pathways to share information between the two hemispheres. The best explanation I've heard is this: If you think of the right hemisphere as Seattle and the left hemisphere as Kirkland (or eastside city separated from Seattle by Lake Washington), Taylor does not have a 520 bridge - or the most efficient way to get across. But, Taylor could use a ferry, speedboat, swim, etc. to get across. And if her new pathways develop well, overtime she can catch up to her peers. We just need to help her develop a really fast speedboat.
We were saddened by the untimely death of Tim Russert, the NBC commentator. So many were touched by him and I'm taking one of his mantras - hanging on the wall of his office - to heart "Thou Shalt Not Whine." Some have asked if we have down days - and we do - but we try really hard to remain positive and "enjoy the now".
Today I am so thankful for the "dad's" in my life - my own wonderful father who is the epitome of strength of character and integrity, my grandfathers who taught me so much about hard work and generosity, David's father who continues to learn new things and embrace life, and of course, David himself. As the blog writer, I can say that Taylor is one blessed little girl to have such an amazing dad. Those of you who know him, I'm sure, agree. I could go on and on, but he would be embarrassed:)
Happy Father's Day to all of the dad's!
I haven't had the opportunity to update the blog with some interesting news from Dr. Cowan, Taylor's neurologist. He called the day after her appointment and said he had studied her MRI further and researched, and he wanted to clarify that he doesn't think she has Septo-Optic Dysplasia. It's a fine line since so many of the conditions overlap, but since her optic nerve is fine and she doesn't have endocrinology issues, he thinks she has "agenisis (or absence) of the corpus callosum" - which is simply part of her brain is missing. The septum pellucidum is actually part of the corpus callosum, so we can simplify the description of her condition. He again encouraged us to not focus too much on terminology, and focus on helping her symptoms (namely - motor skills and vision therapy at this point). He really is such a nice man and I appreciated the house call and clarification. So, we may over time look for another expert that focuses on this specific condition, but we're learning that our energy is best focused on helping Taylor's symptoms so her brain can learn new pathways.
Some have asked what agenisis of the corpus callosum means, and basically it means that she was born without the part of her brain that connects the right and left hemispheres. While the most efficient connection is not there, the brain is miraculous and will often develop new pathways to share information between the two hemispheres. The best explanation I've heard is this: If you think of the right hemisphere as Seattle and the left hemisphere as Kirkland (or eastside city separated from Seattle by Lake Washington), Taylor does not have a 520 bridge - or the most efficient way to get across. But, Taylor could use a ferry, speedboat, swim, etc. to get across. And if her new pathways develop well, overtime she can catch up to her peers. We just need to help her develop a really fast speedboat.
We were saddened by the untimely death of Tim Russert, the NBC commentator. So many were touched by him and I'm taking one of his mantras - hanging on the wall of his office - to heart "Thou Shalt Not Whine." Some have asked if we have down days - and we do - but we try really hard to remain positive and "enjoy the now".
Today I am so thankful for the "dad's" in my life - my own wonderful father who is the epitome of strength of character and integrity, my grandfathers who taught me so much about hard work and generosity, David's father who continues to learn new things and embrace life, and of course, David himself. As the blog writer, I can say that Taylor is one blessed little girl to have such an amazing dad. Those of you who know him, I'm sure, agree. I could go on and on, but he would be embarrassed:)
Happy Father's Day to all of the dad's!
Tuesday, June 10, 2008
Finally - the Neurology appt.
"Enjoy.
Deal with Now.
Enjoy whatever triumphs she has - there will be many."
This is how the neurologist, Dr. Cowan, wrapped up our appointment today. This is good advice for us - to focus on enjoying Taylor everyday, not worrying about the future (or trying at least), and celebrating any milestones Taylor reaches - big and small. We had anxiously awaited this appointment because we were hoping the neurologist would answer some large questions for us. And if not, at least we would know what we can know now, and what we can't know.
We really liked Dr. Cowan. He was very quiet, sweet with Taylor, and spent well over an hour with us explaining, answering questions, and reviewing Taylor's MRI with us. At the end, we didn't learn measurably more than what we entered the room with. But, we're comforted that we're on the right track and doing what we can for Taylor.
We had a disturbing moment before we even made it to her appointment. As we were entering the elevator at Children's Hospital, a little girl about 8 years old was standing there with her mom. She had a bit of a glazed look on her face and just as I was about to worry about her, she just tipped over and banged her face against the elevator. Her mom just took her by the arm and led her off the elevator. David offered to help, but her mom said they were fine. This is what I mean by counting our blessings every time we're there.
Taylor quickly became known in the neurodevelopment office as the "baby with the beautiful blue eyes." They really made us feel "normal" and recognized Taylor's special gifts. She was happy through-out the appointment, smiled, and practiced her new noises (a fake cough and lots of goo's...).
Dr. Cowan confirmed that she does have a version of Septo-Optic Dysplasia. He termed this condition as "not common, but not extraordinarily rare". He did note that he has a high bar for "rare" though since they see conditions most doctors don't. Essentially, her brain needs to learn new pathways and utilize some of the many back-up systems of the brain. He said he would be far less concerned with labels though, and more focused on treating symptoms. He extensively examined Taylor, asked lots of questions about her development, and did several development tests with her. He agreed that her motor development is delayed, particularly in her hands. She doesn't have spactisity or low muscle tone (conditions fairly common with SOD). He said it's difficult to predict the severity of her condition - he doesn't think it will be severe, but she will have some motor delays and probably fall somewhere in the middle of the broad range of possibilities.
He also is concerned with her vision. He doesn't think she is tracking objects well and said vision issues can confuse the situation (i.e. if she isn't seeing well, she won't reach for objects she can't see, etc.). It can be very difficult to tell where the problem lies at her young age - a motor development issue vs. vision problems. He thinks the way information is going from her eyes to her cortex is sluggish and inefficient - thus the tracking problems. He said her cortex is normal, so the pathways to the cortext are slow - either immature, or abnormal. It's too early to know. He's seen people with cortical vision impairments (due to strokes, car accidents, etc) make great strides and can improve greatly. Unfortunately we just need to keep doing what we're doing in this area and wait until she gets older to have a better sense of her vision and what we can do if there are issues. This is frustrating because we'd love to help this area immediately, but she's simply too little to know what problems, if any, she's facing.
The area I'm most worried about is cognitive (i.e. intelligence). Unfortunately this is an area they can't know much about yet because even normal babies aren't hitting any observable milestones in this area yet. Things we can look for at her young age are socialability, understanding and recognizing people, and object permanence (simply put, peek-a-boo). This is encouraging because Taylor definitely recognizes her family, has shown preferences for her family and demonstrated stranger awareness/anxiety, and will babble at/with you. We won't have a great sense of this area though for many months, if not years. We surely hope to develop patience as our next virture.
Re the MRI of her brain, he said the white and gray matter (large parts of the brain) look normal, cortex (which controls vision), and parts of the brain that control coordination and movement look normal. This is good news - hopefully once her brain learns new pathways to connect the right and left hemispheres of her brain (since her corpus callosum is missing), she will make up ground quickly. She has more fluid on her brain than normal and her ventricals are misshaped (known as colpoceplaly), but both are associated findings with her corpus callosum being absent (i.e. there is extra space in her brain so the fluid and ventricals have filled the space). He said it's difficult to predict what the brain structure will mean for her future function - lots of "normal" people have abnormal brains and lots of "challenged" people have normal brains. The brain really is a great mystery.
He stressed that the important charts to watch are how she tracks against development milestones, not what the MRI says. He will track this carefully for us and over time be able to make more specific suggestions re her future potential. He also stressed that kids surprise them all the time and just when you think a kid has plateaued, they learn entirely new skills.
Dr. Cowan said the Boyer Clinic is really good ("premier" for our area), encouraged us to continue with regular therapy and stimulate/play with her often. He said we will likely hear of "magic formulas" that might help her, but he encouraged us to trust the experts we are working with and that "she will do what she can do."
He reviewed our initial endocrine results for us and they were positive - her bone age is normal and her hormone (including thyroid, cortisol, cortisone, etc) and electrolyte levels were normal. He said her insulin growth factor was a little low, but her other growth hormone levels were fine, so it likely doesn't mean anything. We still need the full report from the endocrinilogist, but this is encouraging. Of course, she may develop issues in this area over time, but in the spirit of "deal with now", we'll savor the good report.
He relieved a few concerns, namely:
- Other than endocrine (which can be managed with medication), there are no long-term health concerns. Developmental delays yes, but her health is not at risk.
- Tumors are unlikely to develop (as rare as for other kids) and we don't need to worry about this (there was a note on her MRI about watching for this, so we were concerned).
- Seizures are not a dominant or primary issue with this condition and shouldn't develop. They might, but it's unlikely.
Unfortunately he didn't say what I wanted to hear "she'll be fine". But we were prepared for this. We are going to just have to wait and see how she hits the milestones. We'll see him every 3 months and continue with opthamology and endocrinology appointments.
Now that we have the most crucial appointments out of the way, we need to focus on living normally - helping Taylor of course, but living normally as a family. Today I relied heavily on the Serenity Prayer:
"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference."
David and I agreed that we are still counting on a fabulous, "normal" life for Taylor. And she will be fine - regardless.
Sunday, June 8, 2008
IFSP Meeting with Boyer Clinic
Sorry I've been behind on updating the blog....my mom and little sister are in town and we've been talking too late at night. So, I'm a bit behind, but we've been having a lot of fun.
Taylor had her Individual Family Services Plan (IFSP) meeting on Thursday and it went well. Kelvie and Sarah from the Boyer Clinic came over and we spoke about our goals for Taylor's development. This is a requirement by the state and seemed premature to us since we haven't even met with the neurologist yet, but we want her therapy to start asap and the IFSP had to be in place.
They both agreed that Taylor was focusing and tracking objects better than the last time they saw her. This is good news - we always love to hear positive feedback since small improvements are difficult for us to notice sometimes.
While we talked about her IFSP, Sarah (the physical therapist) worked with Taylor. This picture is of Taylor uninterested in one of the toys and playing on the exercise ball. She practiced holding shaker toys in each hand at the same time, holding a large ring with both hands at the same time, and was encouraged to reach for toys. She also practiced sitting and did tummy time. The best exercise was tummy time on a small, plastic ball (similar to what you might use for ab exercises at the gym, but baby-size). Taylor did well, although got tired mid-way through. We need to work on her stamina. I asked about specific therapy recommendations and we were encouraged to work with her regularly through-out the day (i.e. when changing a diaper, roll her over for tummy time, etc.) vs. a specific work-out plan. We're going to really focus on making sure she gets lots of opportunity to get stronger following Sarah's lead.
The IFSP discussion was interesting. We shared what we hope for Taylor, mainly:
- We want Taylor to have a normal life, with the same opportunities and potential as other kids (if this isn't possible, we want her to get as close as possible).
- We want Taylor to have a high self-esteem and believe that she is wonderful, regardless of where her mental and physical development may end up.
- We want our family-life (particularly Lauren and Jake) to be normal and to minimize extra burden on them.
That is it in a nutshell. We really like Kelvie and Sarah and look forward to spending lots of time with them. We also will meet with the vision specialist at the Boyer Clinic after we meet with the neurologist. While Taylor's eyes are fine now, it's difficult to know how impaired her vision might have been in her first months of life, which slowed her development. This area is fuzzy to us, but we'll take help from anywhere we can and try anything to help Taylor.
We had a really nice week-end with the kids and my family. Today at church the message was about faithfulness - I am feeling hopeful and trusting in my faith that Taylor is going to be OK. We're really excited to see the neurologist on Tuesday and hope to have lots more to report.
Wednesday, June 4, 2008
Endocrinology, Opthamology, oh my....
Today I counted a lot of blessings. We had a full day of appointments with Taylor and I think we're all tired, but relieved. She was a little trooper - we were at various appointments, or waiting, from 10am-3pm today - quite awhile for a little one. This is a picture of her at the endocrinology appt.
We started the day at Children's Hospital and once again, we were reminded how blessed we are and how much we have to be thankful for. It was crowded today and we were in various parts of the hospital (speciality clinics, lab, x-ray) and saw so many kids dealing with so much. Our lives seem infinitely easier than what many of those poor kids are facing.
Our first apointment was with Dr. Helen Dilchek, an endocrinologist. At first she seemed a little loopy to us, but quickly became endearing. She did a great job educating us about the endocrine system and was very optimistic about Taylor. She had seen a number of kids with Septo-Optic Dysplasia and after examining Taylor, she said that Taylor looked very normal to her. Particularly compared to many kids that she has seen with this condition who have serious vision problems (including blindness) and deformed heads (due to abnormal brain development). She described that Taylor's posterior pituitary is supposed to have a "bright spot", which was weak on her MRI - which may be a normal variant, or could cause problems for Taylor. The posterior pituitary regulates the antidiuretic hormone (also known as diabetes insipidus) and growth hormone. The antidiuretic hormone essentially helps the body control water, so if there was a deficiency, you could become severely dehydrated, or ill, without proper care. Growth hormone simply helps regulate growth. Both of these hormones may be at risk based on her MRI, or may be fine. In any case, they can be controlled with medication if needed (pills for the antidiuretic hormone and shots for growth hormone). Side note - this is a great example of the evils of the Internet - I had stumbled across diabetes insipidus on the Web from her medical records and assumed it was the diabetes that we're all familiar with. It's not - it's simply the way the body controls water and it's easily regulated with medication vs. the dangers of the more common form of diabetes. Anyway, Taylor's anterior pituitary appears normal on the MRI, which is great, because this is where the thyroid hormone and cortisol/adrenal hormones are controlled.
Taylor had a blood draw to check her endocrine system for electrolytes, antidiuretic hormone, growth hormone, cortisol and thyroid hormone. This took 3 large vials of blood. This was the worst part of the day. The technician had a hard time finding a good vein in her arm and it was really sad to watch. Taylor was not a happy camper. Finally, they found a good vein in her hand and got the necessary vials - or so we thought. Unfortunately, we found out later in the afternoon that they stored one of the vials incorrectly for the particular test (it needed to be frozen), so we had to go backfor another blood draw. Taylor once again proved her intelligence by promptly wailing when David sat down with her in the blood draw chair for the second time - smart girl - she knew it was not going to be fun. We also had an X-ray of her hand done to get a baseline report for future growth hormone exams. All in all, a lot to digest but a positive appointment. We should get the test results back in 2 weeks and we'll do a follow-up appointment with the endocrinologist in 4-6 months. This was also a relief - we weren't sure how much we would need to see each specialist. This is one area that even if the test results come back normal, a condition could develop over time, so we'll need to carefully watch for certain symptoms.
After conquering the endocrinologist, we went to Dr. Cadera, our opthamologist. We was very kind and caring since we hadn't seen him since Taylor's MRI. He also was very positive and said he thought she would live a great life. He dilated her eyes and extensively looked at her optic nerve in each eye - both were totally normal. This is so huge and a great sign for her future vision. He said most kids with Septo-Optic Dysplasia have damaged optic nerves and this is why vision problems (some severe) can result. From his point-of-view, he said her eyes were totally normal and her eyeballs look perfect. She tracked, or followed, his light and toys much better today and he said she looked like a totally different kid since the last appointment 2 months ago. She has definitely started reaching for toys more in this timeframe. While it's fantastic news that her eyes are normal, as he explained, it's only one part of the equation. Since vision is controlled by the brain, her eyes can be normal, but still be developmentally delayed. The good news is that she doesn't have any structural issues that could be permanently harmful for her. We can hope as she grows and receives therapy that her brain will catch up with her eyes and she will continue to make good progress. We're hopeful this will be the case.
So, based on both appointments, we're feeling positive today and anxious to meet with the neurologist next week, who we hope will connect the dots. It may be that Taylor doesn't have Septo-Optic Dysplasia - instead - she was simply born without her corpus collosum and septum pellucidum in her brain. She will still need the same therapy related to development delays, but some of the scary scenarios could be taken off the table.
Phew....lots of long-winded explanations, but wanted to share the latest. Taylor didn't have her first physical therapy session yesterday as planned. We had miscommunication from the Boyer Clinic, where our family resource coordinator said we would have the session, but the therapist wanted to wait until after our Individual Family Services Plan (IFSP) meeting tomorrow. This was a drag because we were eagerly awaiting getting her therapy started, but we'll be ready to go next week.
We also received a huge gift last night when my mom and sister, Shawna, arrived. Our spirits are lifted and it's always fun to watch the kids run around and provide updates on the most important parts of their lives (so far - our trip to Disneyland, various friend updates, new skills learned and shown off, seem to be leading the pack).
Today I feel hopeful and thankful. After seeing others in far worse shape today, it's a telling reminder to embrace the gifts we have. This scare with Taylor is also a reminder to treasure Lauren and Jake, and all of our health - which can be fleeting. I read something powerful today, "Worry wastes time." So simple, but so true. What a shame it would be to get consumed with worry and miss the joys of our everyday life. Even if Taylor walks a year behind her peers, she will still walk and I could miss a year of smiles and laughter if I worried deeply every step of the way. I'm going to try to hang on to this optimism and enjoy every moment. More food for thought:
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23.
We started the day at Children's Hospital and once again, we were reminded how blessed we are and how much we have to be thankful for. It was crowded today and we were in various parts of the hospital (speciality clinics, lab, x-ray) and saw so many kids dealing with so much. Our lives seem infinitely easier than what many of those poor kids are facing.
Our first apointment was with Dr. Helen Dilchek, an endocrinologist. At first she seemed a little loopy to us, but quickly became endearing. She did a great job educating us about the endocrine system and was very optimistic about Taylor. She had seen a number of kids with Septo-Optic Dysplasia and after examining Taylor, she said that Taylor looked very normal to her. Particularly compared to many kids that she has seen with this condition who have serious vision problems (including blindness) and deformed heads (due to abnormal brain development). She described that Taylor's posterior pituitary is supposed to have a "bright spot", which was weak on her MRI - which may be a normal variant, or could cause problems for Taylor. The posterior pituitary regulates the antidiuretic hormone (also known as diabetes insipidus) and growth hormone. The antidiuretic hormone essentially helps the body control water, so if there was a deficiency, you could become severely dehydrated, or ill, without proper care. Growth hormone simply helps regulate growth. Both of these hormones may be at risk based on her MRI, or may be fine. In any case, they can be controlled with medication if needed (pills for the antidiuretic hormone and shots for growth hormone). Side note - this is a great example of the evils of the Internet - I had stumbled across diabetes insipidus on the Web from her medical records and assumed it was the diabetes that we're all familiar with. It's not - it's simply the way the body controls water and it's easily regulated with medication vs. the dangers of the more common form of diabetes. Anyway, Taylor's anterior pituitary appears normal on the MRI, which is great, because this is where the thyroid hormone and cortisol/adrenal hormones are controlled.
Taylor had a blood draw to check her endocrine system for electrolytes, antidiuretic hormone, growth hormone, cortisol and thyroid hormone. This took 3 large vials of blood. This was the worst part of the day. The technician had a hard time finding a good vein in her arm and it was really sad to watch. Taylor was not a happy camper. Finally, they found a good vein in her hand and got the necessary vials - or so we thought. Unfortunately, we found out later in the afternoon that they stored one of the vials incorrectly for the particular test (it needed to be frozen), so we had to go back
After conquering the endocrinologist, we went to Dr. Cadera, our opthamologist. We was very kind and caring since we hadn't seen him since Taylor's MRI. He also was very positive and said he thought she would live a great life. He dilated her eyes and extensively looked at her optic nerve in each eye - both were totally normal. This is so huge and a great sign for her future vision. He said most kids with Septo-Optic Dysplasia have damaged optic nerves and this is why vision problems (some severe) can result. From his point-of-view, he said her eyes were totally normal and her eyeballs look perfect. She tracked, or followed, his light and toys much better today and he said she looked like a totally different kid since the last appointment 2 months ago. She has definitely started reaching for toys more in this timeframe. While it's fantastic news that her eyes are normal, as he explained, it's only one part of the equation. Since vision is controlled by the brain, her eyes can be normal, but still be developmentally delayed. The good news is that she doesn't have any structural issues that could be permanently harmful for her. We can hope as she grows and receives therapy that her brain will catch up with her eyes and she will continue to make good progress. We're hopeful this will be the case.
So, based on both appointments, we're feeling positive today and anxious to meet with the neurologist next week, who we hope will connect the dots. It may be that Taylor doesn't have Septo-Optic Dysplasia - instead - she was simply born without her corpus collosum and septum pellucidum in her brain. She will still need the same therapy related to development delays, but some of the scary scenarios could be taken off the table.
Phew....lots of long-winded explanations, but wanted to share the latest. Taylor didn't have her first physical therapy session yesterday as planned. We had miscommunication from the Boyer Clinic, where our family resource coordinator said we would have the session, but the therapist wanted to wait until after our Individual Family Services Plan (IFSP) meeting tomorrow. This was a drag because we were eagerly awaiting getting her therapy started, but we'll be ready to go next week.
We also received a huge gift last night when my mom and sister, Shawna, arrived. Our spirits are lifted and it's always fun to watch the kids run around and provide updates on the most important parts of their lives (so far - our trip to Disneyland, various friend updates, new skills learned and shown off, seem to be leading the pack).
Today I feel hopeful and thankful. After seeing others in far worse shape today, it's a telling reminder to embrace the gifts we have. This scare with Taylor is also a reminder to treasure Lauren and Jake, and all of our health - which can be fleeting. I read something powerful today, "Worry wastes time." So simple, but so true. What a shame it would be to get consumed with worry and miss the joys of our everyday life. Even if Taylor walks a year behind her peers, she will still walk and I could miss a year of smiles and laughter if I worried deeply every step of the way. I'm going to try to hang on to this optimism and enjoy every moment. More food for thought:
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23.
Sunday, June 1, 2008
Peace be with you
This morning we went to church and had a nice, quiet time. Often I teach Lauren's Sunday school class or David is an usher, but today we were able to sit together as a family (except Jake - who does much better in the kid play room). One of the common phrases in the Catholic Church is "Peace be with you." I've repeated this many times during the meet-and-greet section of church without really considering the meaning behind the phrase.
Today, perhaps I was feeling more spiritual than usual, but the phrase really resonated with me. I have been praying for peace and trusting that "..And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Phillipians 4:7. While I don't understand why Taylor will have a harder road than some, I'm trying to trust that her life will be wonderful.
Now I am praying that Taylor will be at peace and her journey will be joyful, even if she has to work a little harder. I want her to always know that she is loved, special, and oh so precious. I'm praying that Lauren and Jake will also have peace and that Taylor's extra medical care and related stresses do not become a burden on them. I see them cuddling her, making her laugh and loving her and I want to bottle that feeling up for them to hold on to forever. I pray that David and I will find peace from worry and trust that Taylor's life will be wonderful - whatever it might bring. I pray that we will continue to have a united front and be each other's biggest supporters. So, "peace be with you" means a little something more to me today.
A few days ago, after picking up her medical records, I spent some time on the Internet - oh, what a big mistake. I was searching on terms in her records and sufficiently freaked myself out. I really should learn to stay away from the Internet and wait to see what the specialists have to say. Anyway, the excess information sent me into a bit of a funk, but we had a really nice week-end so I'm feeling better.
Taylor is back on track sleep-wise - hooray! She's sleeping through the night again and we're all much happier. Any time I let myself worry I only need to see her smile and her eyes light up and I really do think she'll be fine. We're hoping to learn more info over the next few weeks as we meet with various specialists, but I'm planning on holding on to her smile and bright eyes regardless of what the next few weeks bring.
Today, perhaps I was feeling more spiritual than usual, but the phrase really resonated with me. I have been praying for peace and trusting that "..And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Phillipians 4:7. While I don't understand why Taylor will have a harder road than some, I'm trying to trust that her life will be wonderful.
Now I am praying that Taylor will be at peace and her journey will be joyful, even if she has to work a little harder. I want her to always know that she is loved, special, and oh so precious. I'm praying that Lauren and Jake will also have peace and that Taylor's extra medical care and related stresses do not become a burden on them. I see them cuddling her, making her laugh and loving her and I want to bottle that feeling up for them to hold on to forever. I pray that David and I will find peace from worry and trust that Taylor's life will be wonderful - whatever it might bring. I pray that we will continue to have a united front and be each other's biggest supporters. So, "peace be with you" means a little something more to me today.
A few days ago, after picking up her medical records, I spent some time on the Internet - oh, what a big mistake. I was searching on terms in her records and sufficiently freaked myself out. I really should learn to stay away from the Internet and wait to see what the specialists have to say. Anyway, the excess information sent me into a bit of a funk, but we had a really nice week-end so I'm feeling better.
Taylor is back on track sleep-wise - hooray! She's sleeping through the night again and we're all much happier. Any time I let myself worry I only need to see her smile and her eyes light up and I really do think she'll be fine. We're hoping to learn more info over the next few weeks as we meet with various specialists, but I'm planning on holding on to her smile and bright eyes regardless of what the next few weeks bring.
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