Monday, January 28, 2008
Personality
This video shows one of Addy's experiences using her sippy cup. She has just started to show some interest in it. We shot this video second and she was beginning to lose interest. However, a video taken shortly before it actually caught her using it quite nicely with mom's help. You will enjoy her talking in this video.
Addy has really started to show us a little personality. She is generally very happy and playful. She gets mad when she's playing with a toy and she can't get it to do what she wants. It's actually kind of nice to see. We also have noticed much more laughing and smiling lately.
We will be going for Addy's IFSP (Individualized Family Service Plan) on Friday. This will be a plan of action that we sit down and write with the early intervention team, outlining her goals and objectives for the home service program. We are also noticing quite a difference now that she is on a large increase of her acid reflux medication. We seem to have the hunger more under control.
Monday, January 21, 2008
Friday, January 18, 2008
An exciting week!
Well we have had a busy week around here. Addy received her new hand braces on Wednesday. They are hot pick and are very small and cute. She doesn't seem to mind wearing them. They give her a good stretch between her thumb and pointer finger (which is currently very tight), as well as provide us the opportunity to start stretching her wrists little by little.
On Thursday we paid a visit to the gastroenterologist. Didn't think there was going to be too much new news, however there was. I spoke with him about her weight gain and her constant hunger. He said that it is related to the acid reflux. She is probably experiencing a lot of reflux, which we can't see with our eyes and it's causing her to have an uncomfortable feeling. When babies are this young, they can't differentiate the difference between that uncomfortable feeling and hunger, so they assume they are hungry. Eating also makes the uncomfortable feeling subside, so they want to do more of it. Therefore, her reflux med has been doubled and we are already noticing some differences in her appetite. Very interesting!
Friday, we had our re-eval for Early Intervention. Addy of course qualifies with the diagnosis of Arthrogryposis, but even without the diagnosis she did have some scores low enough that would have qualified her. They were extremely impressed with some of the things she was doing (the same therapists saw her at a month old) and gave me a lot of input about her developmental progress. We also had a bonus professional. A former colleague of mine who is a psychologist stopped in to say hello and asked if she could stay to watch Addy's eval. I had no problem with that. It gave me a chance to chit chat with her and ask lots and lots of questions. She has many years of experience in testing kids cognitive ability at young ages and with disabilities. Therefore, she was able to watch Addison and give me her opinion. Addy scored highest in the visual motor area which coincides with a lot of the same developmental aspects of a cognitive test at an infant level. She scored at age level and it was felt by all that her limitations are only physical in nature at this point. Some of the skills that I currently don't see her doing are only because the physical limitation doesn't allow her to show us those. All in all, we spent a couple of hours there and left with many previously unanswered questions answered.
We then went on to therapy where we found out that Addison's previous physical therapist, Steve, from downtown Children's hospital is moving to our current site and we are now slotted to be on his caseload. We are thrilled. Steve was one of the therapists that I felt was the most knowledgeable about Addy and worked with her the best. We are so excited to be back with him!
So we had a great week and we hope that the news just continues to get better from here. Early Intervention will begin for Addy next month, with a therapist coming out to our house once a week.
On Thursday we paid a visit to the gastroenterologist. Didn't think there was going to be too much new news, however there was. I spoke with him about her weight gain and her constant hunger. He said that it is related to the acid reflux. She is probably experiencing a lot of reflux, which we can't see with our eyes and it's causing her to have an uncomfortable feeling. When babies are this young, they can't differentiate the difference between that uncomfortable feeling and hunger, so they assume they are hungry. Eating also makes the uncomfortable feeling subside, so they want to do more of it. Therefore, her reflux med has been doubled and we are already noticing some differences in her appetite. Very interesting!
Friday, we had our re-eval for Early Intervention. Addy of course qualifies with the diagnosis of Arthrogryposis, but even without the diagnosis she did have some scores low enough that would have qualified her. They were extremely impressed with some of the things she was doing (the same therapists saw her at a month old) and gave me a lot of input about her developmental progress. We also had a bonus professional. A former colleague of mine who is a psychologist stopped in to say hello and asked if she could stay to watch Addy's eval. I had no problem with that. It gave me a chance to chit chat with her and ask lots and lots of questions. She has many years of experience in testing kids cognitive ability at young ages and with disabilities. Therefore, she was able to watch Addison and give me her opinion. Addy scored highest in the visual motor area which coincides with a lot of the same developmental aspects of a cognitive test at an infant level. She scored at age level and it was felt by all that her limitations are only physical in nature at this point. Some of the skills that I currently don't see her doing are only because the physical limitation doesn't allow her to show us those. All in all, we spent a couple of hours there and left with many previously unanswered questions answered.
We then went on to therapy where we found out that Addison's previous physical therapist, Steve, from downtown Children's hospital is moving to our current site and we are now slotted to be on his caseload. We are thrilled. Steve was one of the therapists that I felt was the most knowledgeable about Addy and worked with her the best. We are so excited to be back with him!
So we had a great week and we hope that the news just continues to get better from here. Early Intervention will begin for Addy next month, with a therapist coming out to our house once a week.
Sunday, January 6, 2008
Grandma
Well, we have had an emotional holiday season of 2007. Grandma Mares fell on Christmas Eve and broke her hip. She had surgery on Christmas morning and has been in Henry Ford Hospital for rehab since then. She is expected to return home sometime within the next couple of weeks. Needless to say, our little miss Addison has been great therapy for grandma. We have been to the hospital to visit almost everyday. Addison's favorite thing to do is lay in grandma's hospital bed, watch the movable TV and play with the long cord that activates the light on the wall. Oh yeah, and we have discovered that she likes balloons!
Other than that, all is well. Addy's surgery for the tubes in her ears shortly before Christmas went very well. You wouldn't have even known she had surgery. Addy had a good Christmas and was spoiled by friends and relatives. She is going to be re-evaulated for early intervention on the 18th of January. We have some follow up doctor visits within the coming weeks.
Get well soon Grandma. We love you!
Other than that, all is well. Addy's surgery for the tubes in her ears shortly before Christmas went very well. You wouldn't have even known she had surgery. Addy had a good Christmas and was spoiled by friends and relatives. She is going to be re-evaulated for early intervention on the 18th of January. We have some follow up doctor visits within the coming weeks.
Get well soon Grandma. We love you!
Saturday, December 15, 2007
Diagnosis
Well, it's official! Addy has been given a diagnosis of mild Arthrogryoposis.
The full medical term is arthrogryposis multiplex congenita which is a nonprogressive condition characterized by multiple joint contractures found throughout the body at birth. The major cause of arthrogryposis is decreased fetal movements or maternal disorders. During the early stages of development in the womb, the baby typically has normal joint development. As the pregnancy progresses the lack of fetal movement causes extra tissue to develop around the joints. The frequency of occurence is 1 in every 3000 live births. (Was very surprised to read that stat). There is a gene connection with arthrogryposis, however this area is unchartered territory at this point. Therefore, we may never have exact answers exactly why this happened or if we are at risk for possible pregnancies in the future.
Addy has a mild case of arthrogryposis, which we are very fortunate for. In her case life span should not be affected nor should her ability to be functional as she gets older. She will continue to receive OT and PT to increase the mobility in all her joints.
When you see Addy, you might ask yourself, "What exactly seems to be her issues, because she looks pretty normal at just a glance." Well, here are a few of the issues that have led doctors to this diagnosis. She has wrists that are extremely tight with very little downward flexion. She has the ulnar deviation of her fingers on both hands, with the left presenting more noticeably than the right. She also had one finger contracture at birth. The tightness continues throughout most of her upper body, with her shoulders and neck being affected. Her neck is so tight that she hardly has any mobility in turning to look left without turning her whole body. She can lift her arms up to eye level, but beyond that is painful. Her ankles are a little on the tight side as well. Immediately at birth, comments were made about her feet. After examination doctors say that her feet present as if she were just on the verge of club feet, with some of her toes having a different look to them.
Along with these symptoms she also has some small things that can be found in association with arthrgryposis. These include a bifid uvula, feeding issues, short neck and we are unsure yet about the possibility of a small stature.
So, with all that being said, it really doesn't change much with how we will work with her as far as therapy goes. I am now on a mission to find a doctor who specializes in or has a great interest in Arthrogryposis. I think it's important that someone extremely familiar with the condition follow her as she grows. She is going back to Early Intervention in January and with the diagnosis it is almost a sure bet that she will qualify. That also means that she too will qualify to begin school at age 3. Mom is happy about that. I would take that with or without a disability. Also means, that she will probably eventually receive a special education label of POHI. I am just blown away with what a coincidence this all seems to be, with her own mom being a POHI teacher. I guess God knew that he was sending her down to the right parents. We will continue to love her and give her the best life that we possibly can.
The full medical term is arthrogryposis multiplex congenita which is a nonprogressive condition characterized by multiple joint contractures found throughout the body at birth. The major cause of arthrogryposis is decreased fetal movements or maternal disorders. During the early stages of development in the womb, the baby typically has normal joint development. As the pregnancy progresses the lack of fetal movement causes extra tissue to develop around the joints. The frequency of occurence is 1 in every 3000 live births. (Was very surprised to read that stat). There is a gene connection with arthrogryposis, however this area is unchartered territory at this point. Therefore, we may never have exact answers exactly why this happened or if we are at risk for possible pregnancies in the future.
Addy has a mild case of arthrogryposis, which we are very fortunate for. In her case life span should not be affected nor should her ability to be functional as she gets older. She will continue to receive OT and PT to increase the mobility in all her joints.
When you see Addy, you might ask yourself, "What exactly seems to be her issues, because she looks pretty normal at just a glance." Well, here are a few of the issues that have led doctors to this diagnosis. She has wrists that are extremely tight with very little downward flexion. She has the ulnar deviation of her fingers on both hands, with the left presenting more noticeably than the right. She also had one finger contracture at birth. The tightness continues throughout most of her upper body, with her shoulders and neck being affected. Her neck is so tight that she hardly has any mobility in turning to look left without turning her whole body. She can lift her arms up to eye level, but beyond that is painful. Her ankles are a little on the tight side as well. Immediately at birth, comments were made about her feet. After examination doctors say that her feet present as if she were just on the verge of club feet, with some of her toes having a different look to them.
Along with these symptoms she also has some small things that can be found in association with arthrgryposis. These include a bifid uvula, feeding issues, short neck and we are unsure yet about the possibility of a small stature.
So, with all that being said, it really doesn't change much with how we will work with her as far as therapy goes. I am now on a mission to find a doctor who specializes in or has a great interest in Arthrogryposis. I think it's important that someone extremely familiar with the condition follow her as she grows. She is going back to Early Intervention in January and with the diagnosis it is almost a sure bet that she will qualify. That also means that she too will qualify to begin school at age 3. Mom is happy about that. I would take that with or without a disability. Also means, that she will probably eventually receive a special education label of POHI. I am just blown away with what a coincidence this all seems to be, with her own mom being a POHI teacher. I guess God knew that he was sending her down to the right parents. We will continue to love her and give her the best life that we possibly can.
Sunday, December 9, 2007
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