When Anna was first born, we read the typical baby books and followed along with the 'what to expect' book as she accomplished her very first milestones. But after her diagnosis, we no longer knew what to expect.
The neurologist, pediatrician and therapists all said the same thing, therapy, therapy, therapy. You would think this would come as a relief to me. After all, she didn't have to have invasive surgery or any other kind of procedure and they weren't even suggesting any special therapy treatments. The neurologist made it all seem so normal - just work it into her routine. The pediatrician explained that this was a good time to have a stroke, all things considered, and that a baby's whole life is physical therapy. The way they talked, nothing was really wrong, just delayed.
But for some reason I couldn't wrap this concept around my head. To me, this was a horrible scenario. My baby suffered a stroke inutero and may have trouble for the rest of her life. I felt tremendous guilt, second guessed every day of my pregnancy and Anna's first few months and experienced a lot of self pity. I didn't want to have a child who was different, who had trouble performing what seemed like simple tasks to others or couldn't even do these simple tasks at all. And even though Anna seemed like other children in so many ways - she laughed, smiled, socialized, played - I couldn't focus on that; I just thought the worst.
Plus, I wanted a goal to work toward. I wanted new milestones to aim for. But no one offered new guidelines. This made it worse in my eyes since it seemed to me that maybe the doctors and therapists were holding back on me, that they didn't want to tell me what they feared may be the worst case scenario. So instead of 'no news is good news', no news was a conspiracy of sorts. It seemed to me that they didn't want to be responsible for missed goals or maybe even the possibility that she wouldn't reach some of them at all.
Then May came! We had been doing therapy for about five months at this point and Anna was really making some progress. I had to look back to the prior November in order to talk myself off of a ledge at times (!), but she clearly had made progress. So we decided to keep working at home but subtract one professional session per week from our routine. And we decided to see a new neurologist.
Our 'new' neurologist is a quiet, unassuming man. He spent close to an hour listening to me talk and examining Anna. He was patient with me and sweet with Anna - two qualities our first neurologist lacked. Plus, he had his own practice so we saw him in his office rather than having to go to a large hospital complex - a much more relaxed and less depressing atmosphere. Everytime we entered that hospital, I couldn't believe my happy, beautiful, never even had a cold or ear infection baby had to go where all of these sick people went.
He finally told me what I wanted to hear. Anna's condition was stagnant - she was very healthy, was in no danger of having another stroke and all she could do was get better. And he said what I had been dying to hear for months, she would walk, she would talk, she would feed herself, etc. She would 'recover' it was just going to take time, a lot of time. He also gave me a goal - he said most babies with hemi paresis do not crawl, they go straight to walking. There was no doom and gloom in this statement. It was simply a matter of fact - babies with a partial paralysis of half of their body will walk first - no big deal! And he said that rather than walking between 12 and 15 months, Anna would most likely walk between 18 and 24 months. Another relief. After all, Anna was already 14 months, I could definitely survive, at the most, another 10 months of not walking. Finally! Something to shoot for!
I started to breath again! As I said, we had already cut our professional therapy down to one session per week, and now that Anna was only taking one nap, we changed her at home routine as well. We worked out for a full hour in the morning during Sesame Street. We treated it like an adult would treat an exercise program. Monday through Friday, we worked out in the morning and then incorporated smaller exercises into Anna's daily routines and play time. Then we took a break on the weekends. We still did little things throughout her regular routine and play time but we also just had fun, no longer making every moment about therapy. Whew!
I had finally found a happy medium between a child with special needs and a child who's like everyone else. And I had finally learned to relax and let Anna guide me, not always pushing and worrying. I began to enjoy my daughter's young life and accept it and her for what it was - a little delayed compared to others but still filled with lots of joy, love and, of course, exhaustion!
Thursday, January 31, 2008
The Contraption
Around Anna's first birthday, I began propping her up against walls to help her strengthen her hips so that she might stand on her own. She didn't like it at first - I can imagine it was a lot of work and quite a balancing act as well. But as the weeks passed, she could stand against a wall for longer periods of time and started to enjoy it - after all, it was a different view!
As her strength improved, we started propping her up in front of chairs, couches, ottomans, etc. and placing toys on top of these items so she was encouraged to play in a standing position. The longer she stood, the stronger her legs and hips became. We also bought an activity table at a local garage sale (for only $3!) - definitely one of our best tools yet - it provided less support than our furniture so she had to work harder and she loved all of the different gadgets it offered so she didn't complain (unless she fell down!).
Standing in front of these items not only improved her leg and hip strength but strengthened her upper body. In the beginning she would play slumped over but eventually stood more erect leaving her hands and arms free to play rather than aid in supporting her.
As the months passed, she seemed ready to move onto something else but was very hesitant about cruising around. I felt this wasn't necessarily due to her inability but because she needed a little more support than the couch or chair would provide. That's when I knew it was time for some more homemade ingenuity.
Dave and I built the contraption - an Anna-sized version of parallel bars - in July 2007. It's about eight feet long and eighteen inches high (but don't quote me). The first time we placed her between the bars she immediately started laughing albeit nervously. She caught on very quickly and enjoyed being able to move about 'independently'. She used it to squat, balance on one foot, turn around - things I never even thought of! She loved it and would 'play' on it happily throughout the day.
Eventually she ventured from out from between the two bars and hung onto one side. Then she took a real gamble and moved from the contraption to the table, to the chair, etc. When she started scaling the walls like spiderwoman, I knew walking was inevitable.
Anna started walking at 18 1/2 months. And what did she do?! She waited until I popped outside to throw some garbage out to make her move! She wanted a private moment to figure out what she could do. I came back in seconds later only to find her in the middle of the room, holding onto nothing but a great big smile! Walking became Anna's absolutely favorite thing to do! And although I finally understood what parents meant by, 'wait until she starts walking,' I was so relieved, I was happy to follow her all over town if need be!
As her strength improved, we started propping her up in front of chairs, couches, ottomans, etc. and placing toys on top of these items so she was encouraged to play in a standing position. The longer she stood, the stronger her legs and hips became. We also bought an activity table at a local garage sale (for only $3!) - definitely one of our best tools yet - it provided less support than our furniture so she had to work harder and she loved all of the different gadgets it offered so she didn't complain (unless she fell down!).
Standing in front of these items not only improved her leg and hip strength but strengthened her upper body. In the beginning she would play slumped over but eventually stood more erect leaving her hands and arms free to play rather than aid in supporting her.
As the months passed, she seemed ready to move onto something else but was very hesitant about cruising around. I felt this wasn't necessarily due to her inability but because she needed a little more support than the couch or chair would provide. That's when I knew it was time for some more homemade ingenuity.
Dave and I built the contraption - an Anna-sized version of parallel bars - in July 2007. It's about eight feet long and eighteen inches high (but don't quote me). The first time we placed her between the bars she immediately started laughing albeit nervously. She caught on very quickly and enjoyed being able to move about 'independently'. She used it to squat, balance on one foot, turn around - things I never even thought of! She loved it and would 'play' on it happily throughout the day.
Eventually she ventured from out from between the two bars and hung onto one side. Then she took a real gamble and moved from the contraption to the table, to the chair, etc. When she started scaling the walls like spiderwoman, I knew walking was inevitable.
Anna started walking at 18 1/2 months. And what did she do?! She waited until I popped outside to throw some garbage out to make her move! She wanted a private moment to figure out what she could do. I came back in seconds later only to find her in the middle of the room, holding onto nothing but a great big smile! Walking became Anna's absolutely favorite thing to do! And although I finally understood what parents meant by, 'wait until she starts walking,' I was so relieved, I was happy to follow her all over town if need be!
Tuesday, January 29, 2008
Progress
Anna will be two in March and she has made amazing strides since her diagnosis last year. She can walk, sit, sit up, stand up, lie down, crawl up the stairs, go down the stairs on her bottom, feed herself (she's even starting to use a fork with certain items), crawl and a multitude of other things that I don't have a name for. Sometimes I can't even tell the difference between her right and left hands.
Of course, all of this is still done with a little more of a struggle than other children her age, but we're so pleased that she is catching up so well. We're even surprised by some of the things she attempts. This morning she was practically running back and forth on the couch - not an easy feat for a child with balance issues and recently she's been pulling the box that we store under her table to use as a bench out from under the table and steps onto it for a bird's eye view! It makes us a little nervous as we watch the balancing act, but we certainly don't discourage her.
Anna seems to have an intuitive ability to know what she can and cannot do. We're trying to show her how to walk up the stairs now that she's been crawling up them for a few months. Every once in awhile she goes to grab onto the railing as if to try to step up without using her hands but then reverts to crawling. When I try to follow her lead and help her, she pulls away and goes about her business crawling up. I know that within the next month or so she will attempt it on her own, succeed and then begin to improve her new skill by practicing non-stop. It's hard to say no to her when she does this because she so badly wants to add to her abilities. There aren't a lot of gates in house for this exact reason.
Yesterday Anna climbed up the stairs and then went down on her bottom at least three times before dinner time. It's certainly not the most exciting adult entertainment but Dave and I sure do enjoy watching her excitement and independence. The other morning, she went to the top of the stairs with her teddy bear in hand, sat down, threw teddy down so she'd have free hands and proceeded down the stairs. I have to hold back laughter sometimes because I know, to her, this was serious business - to me, simply adorable!
Of course, all of this is still done with a little more of a struggle than other children her age, but we're so pleased that she is catching up so well. We're even surprised by some of the things she attempts. This morning she was practically running back and forth on the couch - not an easy feat for a child with balance issues and recently she's been pulling the box that we store under her table to use as a bench out from under the table and steps onto it for a bird's eye view! It makes us a little nervous as we watch the balancing act, but we certainly don't discourage her.
Anna seems to have an intuitive ability to know what she can and cannot do. We're trying to show her how to walk up the stairs now that she's been crawling up them for a few months. Every once in awhile she goes to grab onto the railing as if to try to step up without using her hands but then reverts to crawling. When I try to follow her lead and help her, she pulls away and goes about her business crawling up. I know that within the next month or so she will attempt it on her own, succeed and then begin to improve her new skill by practicing non-stop. It's hard to say no to her when she does this because she so badly wants to add to her abilities. There aren't a lot of gates in house for this exact reason.
Yesterday Anna climbed up the stairs and then went down on her bottom at least three times before dinner time. It's certainly not the most exciting adult entertainment but Dave and I sure do enjoy watching her excitement and independence. The other morning, she went to the top of the stairs with her teddy bear in hand, sat down, threw teddy down so she'd have free hands and proceeded down the stairs. I have to hold back laughter sometimes because I know, to her, this was serious business - to me, simply adorable!
Saturday, January 26, 2008
Scooting
By January 2007 Anna could roll from her back onto her stomach and return to her back, she could sit up on her own and go from a lying down position to a sitting position. She was using her right hand and arm more and playing a lot more. Soon she started to pivot while on her tummy but still didn't get into a crawling position. So she could change her position from right to left but wasn't able to move toward something. Around her first birthday (March 2007) she started to pivot while she was in a sitting position and reach across and around her body. She brought objects to mid-line with her right hand (a big milestone for a child with a partial paralysis of one side - who knew?!) and used both hands, at times, to hold items and bang objects together.
And then finally she realized she could move! She started to scoot on her bottom from place to place. So whereas most babies crawl in order to explore their environment, Anna scooted! Definitely a sight to see. I had heard that other children who hadn't had a stroke also preferred to scoot rather than crawl. But, of course, the therapists still insisted that she learn how. So we persisted, but for now I was just pleased that Anna could finally move about on her own.
And then finally she realized she could move! She started to scoot on her bottom from place to place. So whereas most babies crawl in order to explore their environment, Anna scooted! Definitely a sight to see. I had heard that other children who hadn't had a stroke also preferred to scoot rather than crawl. But, of course, the therapists still insisted that she learn how. So we persisted, but for now I was just pleased that Anna could finally move about on her own.
Wednesday, January 23, 2008
Home Gym
The following are some suggestions for anyone whose newborn hates tummy time. And when I say 'hate', I mean truly abhors it!
The best thing I ever bought is a wedge. It's made of foam so it's comfortable and sturdy at the same time, and I always put a blanket or quilt over it in order to keep it clean. Much easier to throw the blanket/quilt in the wash than the wedge.
We used (use) the wedge in a lot of different ways. The most obvious is putting Anna on her belly and putting toys in front of her to encourage her to stay on her belly. We also positioned her so that her shoulders were at the top and her hands dangled over the edge - we put the toys on the floor to encourage her to play in this position for awhile. We did this particular exercise to strengthen her neck and shoulders. We also put a bench in front of the wedge and placed toys out of reach to encourage her to look up and turn her head in different directions.
The wedge also taught her how to go from a lying down position to a sitting position. In fact, I didn't think she able to do this and one day she just did! I was so focused on the belly time and teaching her how to roll back and forth that I didn't show her how to transition in this way. And because it seemed that up until now I had to show her what her body could do, I was certainly surprised when she showed me instead! It was a very triumphant moment for sure!
Once she learned to do this by pushing up with her left side, we would offer her left hand our hand so that she could sit up by pushing up on her right side and holding onto our hand. Even though she still only goes from lying to sitting on her left side, this exercise made her more aware of her right side which was an important part of her overall development.
Now that Anna can walk and crawl we use the wedge sparingly, but it's still a great tool. We let her crawl up it and she likes to walk up it too even though she tends to lose her balance. But now she just gets up and continues on with her game!
It's amazing - I have spent so much time with her because of her situation and have been so concerned that she would have an unnatural attachment to me as she grew. But she astounds me every day by her independence and the stubbornness that goes along with it. We've learned that Anna tells us in her own way when she's not ready to learn something and are surprised over and over again when she acquires a new skill. We're just so proud of our baby girl!
The best thing I ever bought is a wedge. It's made of foam so it's comfortable and sturdy at the same time, and I always put a blanket or quilt over it in order to keep it clean. Much easier to throw the blanket/quilt in the wash than the wedge.
We used (use) the wedge in a lot of different ways. The most obvious is putting Anna on her belly and putting toys in front of her to encourage her to stay on her belly. We also positioned her so that her shoulders were at the top and her hands dangled over the edge - we put the toys on the floor to encourage her to play in this position for awhile. We did this particular exercise to strengthen her neck and shoulders. We also put a bench in front of the wedge and placed toys out of reach to encourage her to look up and turn her head in different directions.
The wedge also taught her how to go from a lying down position to a sitting position. In fact, I didn't think she able to do this and one day she just did! I was so focused on the belly time and teaching her how to roll back and forth that I didn't show her how to transition in this way. And because it seemed that up until now I had to show her what her body could do, I was certainly surprised when she showed me instead! It was a very triumphant moment for sure!
Once she learned to do this by pushing up with her left side, we would offer her left hand our hand so that she could sit up by pushing up on her right side and holding onto our hand. Even though she still only goes from lying to sitting on her left side, this exercise made her more aware of her right side which was an important part of her overall development.
Now that Anna can walk and crawl we use the wedge sparingly, but it's still a great tool. We let her crawl up it and she likes to walk up it too even though she tends to lose her balance. But now she just gets up and continues on with her game!
It's amazing - I have spent so much time with her because of her situation and have been so concerned that she would have an unnatural attachment to me as she grew. But she astounds me every day by her independence and the stubbornness that goes along with it. We've learned that Anna tells us in her own way when she's not ready to learn something and are surprised over and over again when she acquires a new skill. We're just so proud of our baby girl!
Monday, January 21, 2008
Time
When you're a mother of a very young child, time is not your own. So many 'experienced' moms told me while I was pregnant to get lots of sleep and enjoy every moment with my husband and by myself because it wasn't going to last. Of course, I took this advise but only truly appreciated it after Anna was born. I think that's probably the same for many new mothers.
So add to all the diapers, feeding, wash and countless other baby chores, therapy. My life as I knew it was gone. My time was so scheduled. I was only grateful that Anna had fallen into a daily routine so I could count on naps and bedtime as my solace.
Two days a week we had half hour sessions in nearby Verona. It was nice getting out of the house and seeing other adults, but it was also a twice-a-week reminder of Anna's disabilities. Just when I felt we were making progress, a session came along and reminded me that Anna had a long road ahead of her.
I tried to focus on her achievements however small they were, but come therapy time, I felt discouraged by the therapists' unimpressed attitude. Don't get me wrong, they weren't mean and certainly recognized improvements from week to week, but I never received the reaction I felt Anna deserved. . . . and, well, that I deserved! After all, I worked just as hard if not harder than Anna did and would actually have to carry the memories of the experience with me for the rest of my life. Anna will grow up and hopefully never remember a time where there were things she couldn't do.
But we forged ahead and worked really hard hoping that during the time inbetween therapy sessions, Anna would make such a huge stride that anything less than a ticker tape parade would do!
So add to all the diapers, feeding, wash and countless other baby chores, therapy. My life as I knew it was gone. My time was so scheduled. I was only grateful that Anna had fallen into a daily routine so I could count on naps and bedtime as my solace.
Two days a week we had half hour sessions in nearby Verona. It was nice getting out of the house and seeing other adults, but it was also a twice-a-week reminder of Anna's disabilities. Just when I felt we were making progress, a session came along and reminded me that Anna had a long road ahead of her.
I tried to focus on her achievements however small they were, but come therapy time, I felt discouraged by the therapists' unimpressed attitude. Don't get me wrong, they weren't mean and certainly recognized improvements from week to week, but I never received the reaction I felt Anna deserved. . . . and, well, that I deserved! After all, I worked just as hard if not harder than Anna did and would actually have to carry the memories of the experience with me for the rest of my life. Anna will grow up and hopefully never remember a time where there were things she couldn't do.
But we forged ahead and worked really hard hoping that during the time inbetween therapy sessions, Anna would make such a huge stride that anything less than a ticker tape parade would do!
Friday, January 18, 2008
Gymboree
When Anna was about 7 months, so pre-diagnosis, we enrolled in Gymboree. It was local, fit into our schedule and was something to kill an hour so I figured, why not?
Anna was close to sitting up on her own when we started so even though tummy time still wasn't working out well, everything else seemed to be moving along. And then we went to Gymboree. . .
Up until this point I didn't know anyone with children Anna's age so I didn't have anyone to compare her to. But now she was surrounded by babies only a day or two older or younger than she - the differences and her slow development were much more apparent.
Whereas all of the babies were sitting on their own and playing and munching on toys, Anna still had trouble sitting on her own, and although she did engage in some play, she seemed much more content to take everything in rather than participate fully.
It wasn't as if she didn't improve. After all, she was still toppling over during the first session, but only a week later, she was sitting on her own without much trouble at all. I was relieved as we walked into session two only to learn that the others had also picked up new skills. Again I wondered: is her development simply slower than others or does she have a true delay? And if so, why?
The other moms were nice, but it was hard for me not to think that they were going home relieved that their child was progressing without problems. I mean, wouldn't I have felt the same way if I was in their shoes? Yes, I think so.
The direct comparison with babies Anna's exact age definitely pushed me to the neurologist. I could no longer cast aside my own nagging thoughts and could no longer accept well meaning friends' explanations.
Anna and I finished with our sessions a few weeks before her diagnosis and never kept in touch with anyone from class. It was too hard for me to sign up for another session after she was diagnosed. I felt as though I had enough to deal with between Anna and the voices in my head - why add to it? So we created our own 'Gymboree' at home where Anna was only compared to Anna. Perhaps the easy way out but definitely the only way for me at the time.
Anna was close to sitting up on her own when we started so even though tummy time still wasn't working out well, everything else seemed to be moving along. And then we went to Gymboree. . .
Up until this point I didn't know anyone with children Anna's age so I didn't have anyone to compare her to. But now she was surrounded by babies only a day or two older or younger than she - the differences and her slow development were much more apparent.
Whereas all of the babies were sitting on their own and playing and munching on toys, Anna still had trouble sitting on her own, and although she did engage in some play, she seemed much more content to take everything in rather than participate fully.
It wasn't as if she didn't improve. After all, she was still toppling over during the first session, but only a week later, she was sitting on her own without much trouble at all. I was relieved as we walked into session two only to learn that the others had also picked up new skills. Again I wondered: is her development simply slower than others or does she have a true delay? And if so, why?
The other moms were nice, but it was hard for me not to think that they were going home relieved that their child was progressing without problems. I mean, wouldn't I have felt the same way if I was in their shoes? Yes, I think so.
The direct comparison with babies Anna's exact age definitely pushed me to the neurologist. I could no longer cast aside my own nagging thoughts and could no longer accept well meaning friends' explanations.
Anna and I finished with our sessions a few weeks before her diagnosis and never kept in touch with anyone from class. It was too hard for me to sign up for another session after she was diagnosed. I felt as though I had enough to deal with between Anna and the voices in my head - why add to it? So we created our own 'Gymboree' at home where Anna was only compared to Anna. Perhaps the easy way out but definitely the only way for me at the time.
Thursday, January 17, 2008
Mom on a Mission
I still remember my first couple of sessions with Anna's PT. We met her at the beginning of December 2006. She was sweet to Anna but not overly involved. I couldn't understand how someone couldn't love her as much as I did and feel as sad and helpless as I did watching my 9 month old struggle to move. And I was convinced that she was wrong when she told me Anna wouldn't crawl before her first birthday.
So I was truly a mom on a mission. As soon as Anna woke up, we did her stretches and then later stretches and baby yoga. We had breakfast, played, took a nap and back to work we went. Lunch, play, nap, therapy. Dinner, play with some therapy thrown in. If Anna was awake, I was doing something I deemed useful.
We worked on strengthening her core all day long. We used the exercise ball for tummy time, balance and reflex work. The peanut (an exercise ball shaped like a peanut) for trunk stability and reflexes while sitting on top of it and hip stability while straddling it. We played on the wedge every chance we got for more tummy time and neck and shoulder strengthening.
The tricks - we watched a lot of Sesame Street, played all kinds of music and even 'performed' for daddy and grandma at times - anything to distract Anna. And when these tricks wore thin, I came up with new ones. I placed toys up higher so she had to lift her head to see them, I got down on the floor and showed her how to crawl and slither around like a snake. I even commando crawled. I got a laugh but that's not exactly what I was going for.
I felt like a shut in. We didn't have time for much. Our day was so structured. I almost looked forward to Anna's therapy sessions with her PT and OT because at least I got to interact with another adult for awhile.
Shattered nerves were the result. I felt guilty if I missed a session or allowed ourselves to skip days altogether. It seemed to me that the only way her brain was going to learn was through repetition so that's what I did to the point of frustration for both mother and child. There were definitely days where I was truly grateful that she would have no memory of all of this.
I'm sure everyone is expecting a happy ending to this entry - did all of our discipline and hard work pay off? Did Anna crawl by her first birthday? Well, no, she didn't. But it certainly wasn't from the lack of trying.
So I was truly a mom on a mission. As soon as Anna woke up, we did her stretches and then later stretches and baby yoga. We had breakfast, played, took a nap and back to work we went. Lunch, play, nap, therapy. Dinner, play with some therapy thrown in. If Anna was awake, I was doing something I deemed useful.
We worked on strengthening her core all day long. We used the exercise ball for tummy time, balance and reflex work. The peanut (an exercise ball shaped like a peanut) for trunk stability and reflexes while sitting on top of it and hip stability while straddling it. We played on the wedge every chance we got for more tummy time and neck and shoulder strengthening.
The tricks - we watched a lot of Sesame Street, played all kinds of music and even 'performed' for daddy and grandma at times - anything to distract Anna. And when these tricks wore thin, I came up with new ones. I placed toys up higher so she had to lift her head to see them, I got down on the floor and showed her how to crawl and slither around like a snake. I even commando crawled. I got a laugh but that's not exactly what I was going for.
I felt like a shut in. We didn't have time for much. Our day was so structured. I almost looked forward to Anna's therapy sessions with her PT and OT because at least I got to interact with another adult for awhile.
Shattered nerves were the result. I felt guilty if I missed a session or allowed ourselves to skip days altogether. It seemed to me that the only way her brain was going to learn was through repetition so that's what I did to the point of frustration for both mother and child. There were definitely days where I was truly grateful that she would have no memory of all of this.
I'm sure everyone is expecting a happy ending to this entry - did all of our discipline and hard work pay off? Did Anna crawl by her first birthday? Well, no, she didn't. But it certainly wasn't from the lack of trying.
Tummy Time
Tummy time was difficult from the very beginning even before we knew about the stroke. But so many friends explained that their children disliked it as well that we just kept trying. Of course, I had my fears that Anna probably hated it more than these children, but I had no proof. So I fought between thinking I was overreacting and thinking I was onto something - but what?
She cried a lot but we persevered. We got down on our stomachs so she had someone to model. We repeatedly opened her right hand trying to show her it was easier with two open hands. We placed toys out of reach, rolled up towels to prop under her chest. We used the Boppy to do the same and bought the 'farm' - a tummy time toy to distract her. Still, very little came of it.
She started to roll on her side at about 4 months and could hold her head up at around 3 months so she was still reaching other milestones. But she continued to be a stubborn little thing when it came to the floor!
And then there was the spitting. So not only did she hate being on her tummy, but she spit up almost as soon as we turned her over. So that was one theory - the poor little person gets gas pains as soon as we put her on her stomach - no wonder she hates it so much. And once she started eating food, well, it just made the spit up more colorful!
So that added timing into the mix - not only did we dread our sessions throughout the day, but we also had to time it so she had virtually an empty stomach otherwise her 'lunch' would wind up on the floor. I feel bad for all of our friends who gave us such cute clothes because they were practically covered for the first six months of her life with bibs and burp cloths!
Of course, I always had a nagging feeling about Anna's tummy time hatred. If only the doctors and friends could see just how much she hated it, then they might not compare her to the other children who reportedly 'hated' tummy time. But I felt too sheepish to continue to call the doctor, and I didn't want to sound like a broken record to my friends. Although, it wasn't that the nagging feeling was about anything specific - I mean, I never imagined anything like a cerebral vascular accident. I just wanted the screaming to stop!
But looking back it seems so obvious. She fisted her right hand, pushed up mainly with her left hand so she was lopsided and collapsed very easily. When I see other babies push up so easily, I can't help but think how I didn't diagnose her on the spot.
My brain wrestled with that thought a lot when Anna was first diagnosed. I appeased myself by telling myself that regardless of not knowing, we still did the right thing and placed her on her stomach. But I guess I felt that I would have been even more diligent knowing the cause. As you can imagine, my brain went back and forth all day with these two opposing thoughts until it was finally bedtime and my mind could rest.
She cried a lot but we persevered. We got down on our stomachs so she had someone to model. We repeatedly opened her right hand trying to show her it was easier with two open hands. We placed toys out of reach, rolled up towels to prop under her chest. We used the Boppy to do the same and bought the 'farm' - a tummy time toy to distract her. Still, very little came of it.
She started to roll on her side at about 4 months and could hold her head up at around 3 months so she was still reaching other milestones. But she continued to be a stubborn little thing when it came to the floor!
And then there was the spitting. So not only did she hate being on her tummy, but she spit up almost as soon as we turned her over. So that was one theory - the poor little person gets gas pains as soon as we put her on her stomach - no wonder she hates it so much. And once she started eating food, well, it just made the spit up more colorful!
So that added timing into the mix - not only did we dread our sessions throughout the day, but we also had to time it so she had virtually an empty stomach otherwise her 'lunch' would wind up on the floor. I feel bad for all of our friends who gave us such cute clothes because they were practically covered for the first six months of her life with bibs and burp cloths!
Of course, I always had a nagging feeling about Anna's tummy time hatred. If only the doctors and friends could see just how much she hated it, then they might not compare her to the other children who reportedly 'hated' tummy time. But I felt too sheepish to continue to call the doctor, and I didn't want to sound like a broken record to my friends. Although, it wasn't that the nagging feeling was about anything specific - I mean, I never imagined anything like a cerebral vascular accident. I just wanted the screaming to stop!
But looking back it seems so obvious. She fisted her right hand, pushed up mainly with her left hand so she was lopsided and collapsed very easily. When I see other babies push up so easily, I can't help but think how I didn't diagnose her on the spot.
My brain wrestled with that thought a lot when Anna was first diagnosed. I appeased myself by telling myself that regardless of not knowing, we still did the right thing and placed her on her stomach. But I guess I felt that I would have been even more diligent knowing the cause. As you can imagine, my brain went back and forth all day with these two opposing thoughts until it was finally bedtime and my mind could rest.
Wednesday, January 16, 2008
Therapy Begins
We saw the neurologist when Anna was about 8 months, and she recommended physical therapy regardless of the ultimate diagnosis from the MRI. So we made an appointment right away and started the Monday before Thanksgiving.
The physical therapist evaluated Anna for about 45 minutes by manipulating her, watching her and talking to me. She determined that it was neurological but, of course, could not tell me anything else.
Well as a lay person, neurological definitely seemed serious and meant a lifetime of therapy, doctors, procedures, difficulties and possible paralysis, maybe even mental retardation. In other words, I thought the worst. I didn't know that neurological could mean anything but a horrible prognosis. Which is why I was so annoyed at the complacency shown by both the neurologist and physical therapist. I couldn't believe they they could be so heartless about my daughter's life.
The first few sessions of therapy were spent doing range of motion exercises and trying to encourage Anna to play with some basic toys. I kept trying to solicit words of encouragement from the therapist but felt that she was just going through the motions. So after three or four sessions I went shopping for a different physical therapist and occupational therapist.
The first therapist was in a hospital about twenty minutes away with a woman whose name I can't even remember. I found a therapist closer who were willing to see her quickly so I made appointments with the pediatric OT and PT.
I was initially happier with the new place. Everyone was friendly and sweet to Anna. And they seemed to take a different approach. They stressed Anna's need to be on her belly and offered different ways of going about it. They seemed more open to my constant theorizing and more sensitive to my concerns. But even they couldn't asuage my greatest fears.
Anna's stroke was diagnosed a couple of weeks after we started seeing these new therapists. I guess I figured that the diagnosis would shed a lot of light onto the situation and the therapy would change to reflect that. But we continued along the same route. I wanted a quick an easy fix and wanted to see immediate and huge improvements in a small amount of time.
Well, that certainly didn't happen. But I did everything in my power to speed up the progress. I bought a foam wedge to aid tummy time. And Anna and I did three half hour (at least) sessions at home as well as two half hour sessions a week at the therapists. We also did two stretching sessions a day consisting of about six exercises - we did each three times for thirty seconds each.
Initially it wasn't too hard to do the stretching. I would put Sesame Street on and she would watch while I stretched her right hand, arm and leg. Sometimes she would protest a bit but for the most part it was painless. Tummy time was definitely a different story!
I pulled out all of the stops. I tempted her with toys, music, silly noises, faces, words of encouragement. It didn't matter - she hated it. The foam wedge helped a little as it wasn't as hard to be on an incline as it was to be flat on the floor. I was happy for a little relief from the crying but still found the constant therapy draining.
I passed on everything that I learned to the therapists: She does better on the wedge. She likes to look at herself in the mirror. She responds better after her nap and before eating as she is still a bit of a 'spitter'. Maybe the rug at the therapy office isn't plush enough; perhaps a mat would work better. I thought all day about ways to improve at-home and in-office therapy. And gratefully the therapists listened and responded and so did Anna, however slowly. . .
The physical therapist evaluated Anna for about 45 minutes by manipulating her, watching her and talking to me. She determined that it was neurological but, of course, could not tell me anything else.
Well as a lay person, neurological definitely seemed serious and meant a lifetime of therapy, doctors, procedures, difficulties and possible paralysis, maybe even mental retardation. In other words, I thought the worst. I didn't know that neurological could mean anything but a horrible prognosis. Which is why I was so annoyed at the complacency shown by both the neurologist and physical therapist. I couldn't believe they they could be so heartless about my daughter's life.
The first few sessions of therapy were spent doing range of motion exercises and trying to encourage Anna to play with some basic toys. I kept trying to solicit words of encouragement from the therapist but felt that she was just going through the motions. So after three or four sessions I went shopping for a different physical therapist and occupational therapist.
The first therapist was in a hospital about twenty minutes away with a woman whose name I can't even remember. I found a therapist closer who were willing to see her quickly so I made appointments with the pediatric OT and PT.
I was initially happier with the new place. Everyone was friendly and sweet to Anna. And they seemed to take a different approach. They stressed Anna's need to be on her belly and offered different ways of going about it. They seemed more open to my constant theorizing and more sensitive to my concerns. But even they couldn't asuage my greatest fears.
Anna's stroke was diagnosed a couple of weeks after we started seeing these new therapists. I guess I figured that the diagnosis would shed a lot of light onto the situation and the therapy would change to reflect that. But we continued along the same route. I wanted a quick an easy fix and wanted to see immediate and huge improvements in a small amount of time.
Well, that certainly didn't happen. But I did everything in my power to speed up the progress. I bought a foam wedge to aid tummy time. And Anna and I did three half hour (at least) sessions at home as well as two half hour sessions a week at the therapists. We also did two stretching sessions a day consisting of about six exercises - we did each three times for thirty seconds each.
Initially it wasn't too hard to do the stretching. I would put Sesame Street on and she would watch while I stretched her right hand, arm and leg. Sometimes she would protest a bit but for the most part it was painless. Tummy time was definitely a different story!
I pulled out all of the stops. I tempted her with toys, music, silly noises, faces, words of encouragement. It didn't matter - she hated it. The foam wedge helped a little as it wasn't as hard to be on an incline as it was to be flat on the floor. I was happy for a little relief from the crying but still found the constant therapy draining.
I passed on everything that I learned to the therapists: She does better on the wedge. She likes to look at herself in the mirror. She responds better after her nap and before eating as she is still a bit of a 'spitter'. Maybe the rug at the therapy office isn't plush enough; perhaps a mat would work better. I thought all day about ways to improve at-home and in-office therapy. And gratefully the therapists listened and responded and so did Anna, however slowly. . .
Tuesday, January 15, 2008
The Diagnosis
This is an account of how we learned of my daughter Anna's prenatal stroke. I created this blog in order to help other families in our situation. Not only do I want families to know there are others going through similar experiences, but I hope that some of the at-home therapies my husband and I have created can help families enjoy the same or similar success we're having with our daughter.
Anna was born in March 2006 and other than being jaundiced due to dehydration, she was very healthy. The only outstanding issue was that Anna refused to breast feed. She drank from a bottle without a problem and sucked on a pacifier but would not latch on. I pumped for a little while but quickly found myself in perpetual feeding mode. So I gave up on breast feeding and moved on. It still bothered me that there was no explanation for it but after talking to friends and family, I learned that it wasn't as unusual as I originally thought and let go.
The first few weeks consisted of the usual craziness that ensues in the home of a newborn. I was exhausted, overwhelmed, bored and emotional. Life was a blur and the days passed quickly. We found our routine and life went back to 'normal'.
Time passed and we relished in every smile, laugh, coo. But at about four months, we started to question why she didn't seem very interested in toys. This concern grew into worry when she continued to abhor tummy time. I accepted friends' and the doctor's explanation that many children don't like tummy time but in the back of mind felt that something was off.
As Anna grew closer to six months, we started to notice her interest in toys grow but she seemed to only explore with her left hand. She kept her right hand fisted and tended to lean to the right when propped up to sit. At her six month appointment, the doctor didn't notice but suggested a physical therapist or neurologist when we brought it up.
We mulled it over but also didn't want to overreact since we felt that she was improving on a daily basis. She was (and is) such a happy baby and was in such good health, that it never occurred to us that there could be anything significantly wrong.
But by eight months when there was only minimal improvement in her right hand, we decided to see a neurologist. She was cold and brief and scared me half out of my mind. She simply told me that Anna had hyper tonicity in her right arm, needed to start physical therapy right away and prescribed an MRI of her brain.
Yikes! I never imagined anything other than hearing that babies develop differently and that Anna was a bit of a late bloomer. But I went through the motions and scheduled her physical therapy evaluation along with the MRI. They couldn't do it for close to six weeks later so I drove myself crazy diagnosing her on the Internet, asking the physical therapists millions of leading questions and emailing the neurologist with tidbits of information that may lead to an earlier diagnosis.
The therapists were aloof and wary of offering any additional information without a diagnosis. The neurologist was unavailable, leaving me to think the worst of scenarios - mental retardation, cerebral palsy or possibly some kind of degenerative disease that would leave Anna helpless her entire life.
Luckily we had a lot of support from friends and family who treated Anna with the love and appreciation all eight month-olds deserve. Plus, it was the holiday season, so that provided some distraction and time away from the Internet-diagnosing!
Finally, Christmas came and went and the moment we had been waiting for was upon us - the day of the MRI. Everything went well and Anna came out of it groggy but no worse for wear. She was such a trooper considering we had to wait in the hospital for close to two hours and she hadn't been able to eat or drink anything. Not very easy to explain to babies that they can't eat or drink before having a procedure! So at least the scariest day of our lives wasn't a nightmare as well.
We took her home and waited for the phone to ring. When we found out that our neurologist wouldn't be available until January 2 (it was December 28), we grew irritated and nervous. So we called our pediatrician who was available and willing to read the report for us. I still had a good feeling as I couldn't imagine there was anything wrong with my 9 month old who had never even had a cold or a sniffle up to now - how could she have a neurological problem?
The phone rang and my husband spoke to the doctor. I could tell by his end of the conversation that something had been found so I picked up the phone and listened to the doctor tell my husband that our daughter had suffered a prenatal stroke. What?! How could this be? He was optimistic and told us everything that every doctor has told us since - it's the best time to have a stroke, all it takes is a lot of physical therapy and she would eventually overcome it and catch up with other babies/kids her age. No need for more tests, no special doctors, hospitals, just lots of physical therapy. They acted as though she had broken her leg, not suffered a stroke before she was even born.
On the one hand I was relieved that the doctors seemed so nonchalant. On the other hand, I felt tremendous guilt and went through every moment of my pregnancy that I could remember. But Anna was already enrolled in therapy twice a week and we were already administering it on our own at home so the test just reinforced the need and reason for it. It really told us nothing more - we were already doing what needed to be done. So we looked on the bright side that nothing else needed to happen other than lots of discipline. And we tried to accept what was and move on.
But that rational thinking still didn't take away from all of the unknown - the worst part about most conditions. But this begins the second chapter of my story, which I will leave for another time. Until then. . . thank you for reading.
Anna was born in March 2006 and other than being jaundiced due to dehydration, she was very healthy. The only outstanding issue was that Anna refused to breast feed. She drank from a bottle without a problem and sucked on a pacifier but would not latch on. I pumped for a little while but quickly found myself in perpetual feeding mode. So I gave up on breast feeding and moved on. It still bothered me that there was no explanation for it but after talking to friends and family, I learned that it wasn't as unusual as I originally thought and let go.
The first few weeks consisted of the usual craziness that ensues in the home of a newborn. I was exhausted, overwhelmed, bored and emotional. Life was a blur and the days passed quickly. We found our routine and life went back to 'normal'.
Time passed and we relished in every smile, laugh, coo. But at about four months, we started to question why she didn't seem very interested in toys. This concern grew into worry when she continued to abhor tummy time. I accepted friends' and the doctor's explanation that many children don't like tummy time but in the back of mind felt that something was off.
As Anna grew closer to six months, we started to notice her interest in toys grow but she seemed to only explore with her left hand. She kept her right hand fisted and tended to lean to the right when propped up to sit. At her six month appointment, the doctor didn't notice but suggested a physical therapist or neurologist when we brought it up.
We mulled it over but also didn't want to overreact since we felt that she was improving on a daily basis. She was (and is) such a happy baby and was in such good health, that it never occurred to us that there could be anything significantly wrong.
But by eight months when there was only minimal improvement in her right hand, we decided to see a neurologist. She was cold and brief and scared me half out of my mind. She simply told me that Anna had hyper tonicity in her right arm, needed to start physical therapy right away and prescribed an MRI of her brain.
Yikes! I never imagined anything other than hearing that babies develop differently and that Anna was a bit of a late bloomer. But I went through the motions and scheduled her physical therapy evaluation along with the MRI. They couldn't do it for close to six weeks later so I drove myself crazy diagnosing her on the Internet, asking the physical therapists millions of leading questions and emailing the neurologist with tidbits of information that may lead to an earlier diagnosis.
The therapists were aloof and wary of offering any additional information without a diagnosis. The neurologist was unavailable, leaving me to think the worst of scenarios - mental retardation, cerebral palsy or possibly some kind of degenerative disease that would leave Anna helpless her entire life.
Luckily we had a lot of support from friends and family who treated Anna with the love and appreciation all eight month-olds deserve. Plus, it was the holiday season, so that provided some distraction and time away from the Internet-diagnosing!
Finally, Christmas came and went and the moment we had been waiting for was upon us - the day of the MRI. Everything went well and Anna came out of it groggy but no worse for wear. She was such a trooper considering we had to wait in the hospital for close to two hours and she hadn't been able to eat or drink anything. Not very easy to explain to babies that they can't eat or drink before having a procedure! So at least the scariest day of our lives wasn't a nightmare as well.
We took her home and waited for the phone to ring. When we found out that our neurologist wouldn't be available until January 2 (it was December 28), we grew irritated and nervous. So we called our pediatrician who was available and willing to read the report for us. I still had a good feeling as I couldn't imagine there was anything wrong with my 9 month old who had never even had a cold or a sniffle up to now - how could she have a neurological problem?
The phone rang and my husband spoke to the doctor. I could tell by his end of the conversation that something had been found so I picked up the phone and listened to the doctor tell my husband that our daughter had suffered a prenatal stroke. What?! How could this be? He was optimistic and told us everything that every doctor has told us since - it's the best time to have a stroke, all it takes is a lot of physical therapy and she would eventually overcome it and catch up with other babies/kids her age. No need for more tests, no special doctors, hospitals, just lots of physical therapy. They acted as though she had broken her leg, not suffered a stroke before she was even born.
On the one hand I was relieved that the doctors seemed so nonchalant. On the other hand, I felt tremendous guilt and went through every moment of my pregnancy that I could remember. But Anna was already enrolled in therapy twice a week and we were already administering it on our own at home so the test just reinforced the need and reason for it. It really told us nothing more - we were already doing what needed to be done. So we looked on the bright side that nothing else needed to happen other than lots of discipline. And we tried to accept what was and move on.
But that rational thinking still didn't take away from all of the unknown - the worst part about most conditions. But this begins the second chapter of my story, which I will leave for another time. Until then. . . thank you for reading.
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