It was hard for me to walk past all the rows of children. So many beautiful families. So many different heartaches. I tried to distract myself with the breathtaking views of the Portland skyline while we waited and gave Abel a snack. It was hard for me to see all those people struggling. I was reminded of the summer I brought my Uncle to OHSU for his transplant surgeries. I wanted to give rub backs, whisper encouragement and bring hot cups of coffee to all of them. It was surreal for me to remember that now I am the one standing in the Doernbecher waiting room with tears in my eyes desperately needing someone to tell me that this would all go away.
I still dread the weigh in. (A couple months ago a nurse rudely threatened that she was going to force him to get a feeding tube). I work really hard but it is never enough. I don't think other parents realize how much of my day is still consumed by feeding Abel because he cannot feed himself. 5 times a day, I have to buckle and strap him into his chair and sit in front of him on the floor and slowly feed him a giant bowl of food. Food that is fresh and nutritious and handmade. I add bacon, butter and avocado to everything to help bulk up his calories. At the end I let him try to use the spoon with a little help. It takes a very long time but he is so determined. He never gives up. If I am lucky I have time to clean up the mess it makes in time to go cook him another meal. So, I hope you all can understand how crushed I was when they marked Failure to Thrive on his paperwork. I understand it is because he is under weight. Words matter though, and that is not what Failure to Thrive "means". If there is one thing that Abel has proven it is an amazing ability to thrive, despite the odds or difficulty. He thrives.
Dr Peter Blasco was nice and obviously had a lot of experience. The best part of the day was playing in therapy. Abel and the physical therapist, Will, had a great time laughing and playing together. He even got Abel's jokes! This is what their final report said.
"Abel is a well-developed, well-nourished, healthy-appearing 19-month old boy who is alert and in no distress. He is eagerly interactive and very pleasant." Length is about 10th centile, and weight is below 3rd centile.
"Abel tends to keep the left hand fisted a good bit of the time and always prefers to reach with the right hand. He has a lot of extraneous movement going on. It is poorly controlled. Some of it is jerky, some is dystonic, and some is athetoid. There is a great deal of open-mouth posturing and a lot of tongue thrusting. Muscle tone is notably increased throughout the extremities and has decreased through the trunk."
In one section of the report his gross muscle skills are listed as at or below 3 month and in another place they list it as less than 6 months. (That's tough to hear, tough to read, tough to type . . . it's tough to see.)
"In prone he will get his head up. He tends to flip over when rolling. he often gets his arms stuck underneath him. he does not generate much at all in the way of head-righting in supported sitting. In supported stand he bears weight well and he likes to take steps. (yay!) He will reach out and grasp an object. It is a slow process on which he obviously concentrates."
1. History of Birth Asphyxia
2. Extrapyramidal Cerebral Palsy on the Choreoathetoid Spectrum.
3. Failure to Thrive.
4. Cognitive level uncertain. Abel seems very bright, very social. (Love!) Fine motor and vocal functions are both very compromised by his motor disability.
Of course they want us to resume all the physical, occupational and speech therapies as well as any other treatments we are able to do. We were reminded again that the brain is the most adaptable to growth before the age of 2. (That clock is always ticking in the back of my mind. Tick. Tock. Only 5 more months. Tick. Tock.) The Physical Therapist did casually mention that he would need a wheel chair, at least for some amount of time. He said that the rule is, if he is not sitting by 2 he will not walk unassisted ever. If he is not talking by 4 he won't. (Tick. Tock) They always mention these things casually because it is everyday news to them. Me however, it knocks the wind right out of. Whoooosh. There goes the little flame of hope . . .
Just like the day we had to give our dog, Juno, away. I crumbled instead of my husband when I thought it would be the other way around. I cried a lot. We went downtown on the Tram afterwards. Rode around on the Street Cars, tried Ben and Jerry's Schweddy Balls (its been banned from stores) and explored the city that we are learning to love to call home. I am so grateful for my husband who sweeps in and picks up the pieces without skipping a beat.
"BEING DEEPLY LOVED BY SOMEONE
GIVES YOU STRENGTH,
WHILE LOVING SOMEONE DEEPLY
GIVES YOU COURAGE." - Lao Tzu
I still dread the weigh in. (A couple months ago a nurse rudely threatened that she was going to force him to get a feeding tube). I work really hard but it is never enough. I don't think other parents realize how much of my day is still consumed by feeding Abel because he cannot feed himself. 5 times a day, I have to buckle and strap him into his chair and sit in front of him on the floor and slowly feed him a giant bowl of food. Food that is fresh and nutritious and handmade. I add bacon, butter and avocado to everything to help bulk up his calories. At the end I let him try to use the spoon with a little help. It takes a very long time but he is so determined. He never gives up. If I am lucky I have time to clean up the mess it makes in time to go cook him another meal. So, I hope you all can understand how crushed I was when they marked Failure to Thrive on his paperwork. I understand it is because he is under weight. Words matter though, and that is not what Failure to Thrive "means". If there is one thing that Abel has proven it is an amazing ability to thrive, despite the odds or difficulty. He thrives.
Dr Peter Blasco was nice and obviously had a lot of experience. The best part of the day was playing in therapy. Abel and the physical therapist, Will, had a great time laughing and playing together. He even got Abel's jokes! This is what their final report said.
"Abel is a well-developed, well-nourished, healthy-appearing 19-month old boy who is alert and in no distress. He is eagerly interactive and very pleasant." Length is about 10th centile, and weight is below 3rd centile.
"Abel tends to keep the left hand fisted a good bit of the time and always prefers to reach with the right hand. He has a lot of extraneous movement going on. It is poorly controlled. Some of it is jerky, some is dystonic, and some is athetoid. There is a great deal of open-mouth posturing and a lot of tongue thrusting. Muscle tone is notably increased throughout the extremities and has decreased through the trunk."
In one section of the report his gross muscle skills are listed as at or below 3 month and in another place they list it as less than 6 months. (That's tough to hear, tough to read, tough to type . . . it's tough to see.)
"In prone he will get his head up. He tends to flip over when rolling. he often gets his arms stuck underneath him. he does not generate much at all in the way of head-righting in supported sitting. In supported stand he bears weight well and he likes to take steps. (yay!) He will reach out and grasp an object. It is a slow process on which he obviously concentrates."
1. History of Birth Asphyxia
2. Extrapyramidal Cerebral Palsy on the Choreoathetoid Spectrum.
3. Failure to Thrive.
4. Cognitive level uncertain. Abel seems very bright, very social. (Love!) Fine motor and vocal functions are both very compromised by his motor disability.
Of course they want us to resume all the physical, occupational and speech therapies as well as any other treatments we are able to do. We were reminded again that the brain is the most adaptable to growth before the age of 2. (That clock is always ticking in the back of my mind. Tick. Tock. Only 5 more months. Tick. Tock.) The Physical Therapist did casually mention that he would need a wheel chair, at least for some amount of time. He said that the rule is, if he is not sitting by 2 he will not walk unassisted ever. If he is not talking by 4 he won't. (Tick. Tock) They always mention these things casually because it is everyday news to them. Me however, it knocks the wind right out of. Whoooosh. There goes the little flame of hope . . .
Just like the day we had to give our dog, Juno, away. I crumbled instead of my husband when I thought it would be the other way around. I cried a lot. We went downtown on the Tram afterwards. Rode around on the Street Cars, tried Ben and Jerry's Schweddy Balls (its been banned from stores) and explored the city that we are learning to love to call home. I am so grateful for my husband who sweeps in and picks up the pieces without skipping a beat.
"BEING DEEPLY LOVED BY SOMEONE
GIVES YOU STRENGTH,
WHILE LOVING SOMEONE DEEPLY
GIVES YOU COURAGE." - Lao Tzu
Taking the Sky Tram downtown from Doernbechers.
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