Daniel and his big sister Alison seem to have the most love between a brother and sister. There really exists no sibling rivalry. Largely due in part because Daniel is not a real threat to Alison. Given the fact that he still does not crawl or walk and mostly still observes her playing (though that is quickly changing). He hasn't challenged her and taken toys from her. Which is good and which is not so good. She is quick to take toys from him, but he has not yet gotten to the point of noticing that and pitching a fit about that--yet. She also, doesn't get to experience a baby brother.
I took Alison to gymnastics today and we were early. She saw a girl sitting down at one corner and asked if she could sit next to her. The girl was playing a game with her baby brother, who is 2, where he was running between her at one end and their mother at the other end. Alison really liked this and got into hanging around with this girl and her little brother. At one point she was helping him at the water fountain.
Alison asks questions about Daniel's therapy and can draw pictures of him getting therapy but I wonder how much at this age is really understood about her brother. Daniel is her brother, that is what she knows and that is her reality. Deep down though does she realize that it is totally unfair that he is not running around and chasing her like that little boy was doing to his big sister in gymnastics?
Wednesday, February 25, 2009
Wednesday, January 28, 2009
Hey Kids, What Time Is It?
For the past few months, we have been introducing Daniel and ourselves to a new form of communication. We got a sampling of videos from one of his previous therapists and since then we have collected a few of our own.
These videos called Signing Times are extraordinary in helping Daniel communicate. He has learned so many signs and uses some to communicate his needs. Alison has also become very proficient at signing as well and will sometimes be his sign language interpreter. One of the things I love about the videos is that it makes learning sign language extremely easy and fun and Daniel just loves it. Not only that but it is just so encouraging to see him pick it up so quickly.
I love that he knows so many signs and can use them appropriately. It makes me realize once again that for all his delays, he still is a very smart little boy who just takes longer to do things.
Him and his sister-gosh, they will rule the world in their own way someday.
These videos called Signing Times are extraordinary in helping Daniel communicate. He has learned so many signs and uses some to communicate his needs. Alison has also become very proficient at signing as well and will sometimes be his sign language interpreter. One of the things I love about the videos is that it makes learning sign language extremely easy and fun and Daniel just loves it. Not only that but it is just so encouraging to see him pick it up so quickly.
I love that he knows so many signs and can use them appropriately. It makes me realize once again that for all his delays, he still is a very smart little boy who just takes longer to do things.
Him and his sister-gosh, they will rule the world in their own way someday.
Monday, January 5, 2009
New Year, New Questions
A "New Year" to me used to mean promises and hope and new beginning. Did I say used to? I got over that a while ago. Realizing quickly that really the new year was just a change in calendar and what happened the day before was still there the next day even though it was a new year.
Toward the end of last year we finally sent out Daniel's MRI to Dr. Dobyns in Chicago. Dr. Dobyns is a professor and also a researcher on Lissencephaly. He was the guy that we were told over a year ago when we first got the diagnosis that we should contact and ever since his name has come up as the one to contact for further diagnosis. The problem is that to get any sort of recognition from him you have to "donate" $150 towards his research otherwise you will hear back from him typically in about 2+ years. Well, considering the fact that we are in need of an economic stimulus package, we didn't have $150.00 lying around that wasn't designated to something else say food for the kids. Luckily, my parents (Grandma and Papa) generously gave us the money and we sent out the MRI. We heard back from the great doctor in record time even with the holidays and new year and everything, but what we heard makes me want to throw up, makes me want to yell and scream and puts me right back to where I was at the beginning of this blog.
Before I post what he told us I want to explain first why I sent Daniel's MRI to him in the first place. I had no belief that this doctor would end all of Daniel's issues or that this nightmare would be over after the mailbox door was shut. I thought in no way that there would be magic pixie dust sprinkled on the MRI CD. My only wish for sending the MRI along was really to get some further answers. I wanted this doctor to (as he does for a living) further classify Daniel's Lissencephaly so that it could be noted and registered and tucked away somewhere so that someday in the future 5, 10, 15 years from now they will call and say we found the cure, the pill, the antidote..."we are very glad we found you thanks to this documentation, and knowing your precise diagnosis that matches what our treatment cures." Too much to ask, I don't think so? Now, you can see why I go back to the beginning with more questions then answers:
"Best to collect and send some medical summaries, including detailed head growth charts. His brain scan was done at 9 months, an age when it can be difficult to see some details of brain structure based on rapidly changing maturation.
The pattern of convolutions is either normal or perhaps slightly immature for age, but I do not see any type of lissencephaly. A new scan now would probably sort this out. He does have a small cerebellum, particularly the middle portion which is designated “cerebellar vermis hypoplasia” (CVH). My lab works on this group of conditions as well. CVH is associated with a large number of different developmental disorders, some with very good development and others not.
What have you been told, and who are his docs? And where in VA? This is more complicated than just looking at his scan. Where has his head size been tracking?"
WBDobyns
Toward the end of last year we finally sent out Daniel's MRI to Dr. Dobyns in Chicago. Dr. Dobyns is a professor and also a researcher on Lissencephaly. He was the guy that we were told over a year ago when we first got the diagnosis that we should contact and ever since his name has come up as the one to contact for further diagnosis. The problem is that to get any sort of recognition from him you have to "donate" $150 towards his research otherwise you will hear back from him typically in about 2+ years. Well, considering the fact that we are in need of an economic stimulus package, we didn't have $150.00 lying around that wasn't designated to something else say food for the kids. Luckily, my parents (Grandma and Papa) generously gave us the money and we sent out the MRI. We heard back from the great doctor in record time even with the holidays and new year and everything, but what we heard makes me want to throw up, makes me want to yell and scream and puts me right back to where I was at the beginning of this blog.
Before I post what he told us I want to explain first why I sent Daniel's MRI to him in the first place. I had no belief that this doctor would end all of Daniel's issues or that this nightmare would be over after the mailbox door was shut. I thought in no way that there would be magic pixie dust sprinkled on the MRI CD. My only wish for sending the MRI along was really to get some further answers. I wanted this doctor to (as he does for a living) further classify Daniel's Lissencephaly so that it could be noted and registered and tucked away somewhere so that someday in the future 5, 10, 15 years from now they will call and say we found the cure, the pill, the antidote..."we are very glad we found you thanks to this documentation, and knowing your precise diagnosis that matches what our treatment cures." Too much to ask, I don't think so? Now, you can see why I go back to the beginning with more questions then answers:
"Best to collect and send some medical summaries, including detailed head growth charts. His brain scan was done at 9 months, an age when it can be difficult to see some details of brain structure based on rapidly changing maturation.
The pattern of convolutions is either normal or perhaps slightly immature for age, but I do not see any type of lissencephaly. A new scan now would probably sort this out. He does have a small cerebellum, particularly the middle portion which is designated “cerebellar vermis hypoplasia” (CVH). My lab works on this group of conditions as well. CVH is associated with a large number of different developmental disorders, some with very good development and others not.
What have you been told, and who are his docs? And where in VA? This is more complicated than just looking at his scan. Where has his head size been tracking?"
WBDobyns
Saturday, December 27, 2008
Moving Rapidly Towards a New Year
As this year comes to a close, and the new year fast approaches I am amazed by just how quickly time flies and life goes by.
Daniel is sure going strong into the new year. He is making such great strides. Sipping though a straw is getting better and better, eating and chewing is continuing to improve. He is continuing to get strong in his upper and lower body and he just wants to try to do whatever it is that his sister is doing.
The kids are best of friends which is so sweet to see. They love each other like no other brother and sister I have ever seen. It makes Jason and I so very proud of our kids and this wonderful family that we have.
This new year, I am sure, will bring its challenges and its ups and downs as all years past have done. The momentum that we see in Daniel now will no doubt continue, though be tempered with setbacks as well. My only hope is that as a family we will continue to love each other enough to help each other through whatever may stand in our way of moving forward.
Daniel is sure going strong into the new year. He is making such great strides. Sipping though a straw is getting better and better, eating and chewing is continuing to improve. He is continuing to get strong in his upper and lower body and he just wants to try to do whatever it is that his sister is doing.
The kids are best of friends which is so sweet to see. They love each other like no other brother and sister I have ever seen. It makes Jason and I so very proud of our kids and this wonderful family that we have.
This new year, I am sure, will bring its challenges and its ups and downs as all years past have done. The momentum that we see in Daniel now will no doubt continue, though be tempered with setbacks as well. My only hope is that as a family we will continue to love each other enough to help each other through whatever may stand in our way of moving forward.
Friday, December 5, 2008
Ramblings
Lately I have started and stopped several posts in my mind. I have titled them and finished some of them, but really have not been able to actually sit down and put them in the computer.
Finally as I sit here I have an assortment of posts running around and hence the title of this one.
Daniel has recently started the special ed program with the city school. This is a good thing and is the main reason why we moved to the city in the first place. His therapist(s) will be coming weekly, sometimes twice a week and hopefully Daniel's progress thus far will not slow due to the transition.
He is on the verge of so many things. Everyday he demonstrates something new. Small but new and wonderful. He can sip from a straw, he can hold a spoon and help feed himself. He puckers his lips and gives kisses. He points to things and he is learning so many new signs and demonstrates his knowledge everyday.
Daniel is also becoming a typical 2 year old in a not so typical 2 year old body. He is wanting what he wants when he wants it but is getting very frustrated at not being able to communicate his wants. His limits are becoming clear to him and to us.
At this point outsiders could still say it is just his age, his inability to talk and not necessarily his disability, but it is apparent that his disability is ever so present.
Jason said the other night that he is not sad about Daniels disability at all and that he loves Daniel for what he is. That he wouldn't want him any other way and I am in complete agreement except, if it could be another way, I would want it that way.
I find I am still angry, bitter. Not sure at who though. Is it god or something/someone else? I just don't think it is fair. What does the future hold for my sweet boy? Why must he go through this already tough life with an even tougher obstacle? Did I do something to make this happen? Why him? Why can't I be the one to have such an obstacle and he be normal?
I think a lot about the brain now. The brain doesn't get mentioned much in our posts nor does it get mentioned much in our house but it is an ever present force in what happened and can still happen with Daniel. How is it that the brain at such a young age in the developmental stage of the embryo can have such a huge impact on the rest of a persons life? What goes on? How is it's effect changed or can it be changed? There is so little we know about the brain. It is such a huge part of our being that remains so mysterious. One day I hope that there will be more answers than questions. One day I hope I will be less angry at this disease and more able to kick its ass.
Finally as I sit here I have an assortment of posts running around and hence the title of this one.
Daniel has recently started the special ed program with the city school. This is a good thing and is the main reason why we moved to the city in the first place. His therapist(s) will be coming weekly, sometimes twice a week and hopefully Daniel's progress thus far will not slow due to the transition.
He is on the verge of so many things. Everyday he demonstrates something new. Small but new and wonderful. He can sip from a straw, he can hold a spoon and help feed himself. He puckers his lips and gives kisses. He points to things and he is learning so many new signs and demonstrates his knowledge everyday.
Daniel is also becoming a typical 2 year old in a not so typical 2 year old body. He is wanting what he wants when he wants it but is getting very frustrated at not being able to communicate his wants. His limits are becoming clear to him and to us.
At this point outsiders could still say it is just his age, his inability to talk and not necessarily his disability, but it is apparent that his disability is ever so present.
Jason said the other night that he is not sad about Daniels disability at all and that he loves Daniel for what he is. That he wouldn't want him any other way and I am in complete agreement except, if it could be another way, I would want it that way.
I find I am still angry, bitter. Not sure at who though. Is it god or something/someone else? I just don't think it is fair. What does the future hold for my sweet boy? Why must he go through this already tough life with an even tougher obstacle? Did I do something to make this happen? Why him? Why can't I be the one to have such an obstacle and he be normal?
I think a lot about the brain now. The brain doesn't get mentioned much in our posts nor does it get mentioned much in our house but it is an ever present force in what happened and can still happen with Daniel. How is it that the brain at such a young age in the developmental stage of the embryo can have such a huge impact on the rest of a persons life? What goes on? How is it's effect changed or can it be changed? There is so little we know about the brain. It is such a huge part of our being that remains so mysterious. One day I hope that there will be more answers than questions. One day I hope I will be less angry at this disease and more able to kick its ass.
Friday, November 28, 2008
Thanksgiving Do Over
Last year for Thanksgiving we were in North Carolina visiting with Jason's sister and family. Last year I fell down the stairs and had to spend Thanksgiving in the ICU in a hospital in North Carolina. Away from my family.
This year we had every intention of going back to NC and having a do-over of sorts. Unfortunately I got sick (nothing as major as a lacerated spleen). I just did not feel at all up to traveling. So, we had our own Thanksgiving dinner at home.
My parents came over and Jason and I cooked the whole meal together. While this may not be that out of the ordinary for most people, it was out of the ordinary for us as a family.
Since I have known Jason, we have gotten together with his family for Thanksgiving. When we were first dating and engaged we would have Thanksgiving dinner in NJ with his mom, sister, her husband and my parents (a strange combination I agree). When Alison was born we traveled to NC to have Thanksgiving at his sisters house with my parents and his mom in tow.
When we moved to NC and his mom moved as well, it was an easier commute to his sisters just two hours away.
Over the years we had variations on the same theme. Some years my parents couldn't travel to NC from NJ and last year they just decided to stick it out in VA, only to come a week later to drive me home from the hospital.
We used to say (before Alison was born) that it would all be different when we had kids and it was.
Yesterday I was reminiscing about my Thanksgivings when I was a child which were one of my happiest, one of my fondest memories. I felt comfort, I felt loved and I felt safe. I reminisced about this and Jason said, "you want to go back to that." I said that really I wanted my children to have all the same feelings.
What I get from Thanksgiving (besides a belly ache) is this yearning to have special memories for my children. I have always been about traditions, and it means more to me than anything for my children to have traditions too. Something they can cling to when things are not right.
I feel that I don't provide this enough for my children. They have no real religious believes and no sense of belonging. I have failed them in this way. Though I do feel that with Thanksgiving at least, I can provide a little bit of that for them. Just may need to not get sick or be in the hospital.
This year we had every intention of going back to NC and having a do-over of sorts. Unfortunately I got sick (nothing as major as a lacerated spleen). I just did not feel at all up to traveling. So, we had our own Thanksgiving dinner at home.
My parents came over and Jason and I cooked the whole meal together. While this may not be that out of the ordinary for most people, it was out of the ordinary for us as a family.
Since I have known Jason, we have gotten together with his family for Thanksgiving. When we were first dating and engaged we would have Thanksgiving dinner in NJ with his mom, sister, her husband and my parents (a strange combination I agree). When Alison was born we traveled to NC to have Thanksgiving at his sisters house with my parents and his mom in tow.
When we moved to NC and his mom moved as well, it was an easier commute to his sisters just two hours away.
Over the years we had variations on the same theme. Some years my parents couldn't travel to NC from NJ and last year they just decided to stick it out in VA, only to come a week later to drive me home from the hospital.
We used to say (before Alison was born) that it would all be different when we had kids and it was.
Yesterday I was reminiscing about my Thanksgivings when I was a child which were one of my happiest, one of my fondest memories. I felt comfort, I felt loved and I felt safe. I reminisced about this and Jason said, "you want to go back to that." I said that really I wanted my children to have all the same feelings.
What I get from Thanksgiving (besides a belly ache) is this yearning to have special memories for my children. I have always been about traditions, and it means more to me than anything for my children to have traditions too. Something they can cling to when things are not right.
I feel that I don't provide this enough for my children. They have no real religious believes and no sense of belonging. I have failed them in this way. Though I do feel that with Thanksgiving at least, I can provide a little bit of that for them. Just may need to not get sick or be in the hospital.
Monday, November 17, 2008
How Big is Danny...So Big!
I came home from work the other day and my mom was sitting on the floor with Daniel and was holding him up. Daniel was wearing his fancy new sneakers and was holding himself up pretty well (he can stand unassisted if he leans against something). My mom was also trying to get Daniel to "walk" and he did a few steps (assisted) quite well. The thing that struck me most about this particular afternoon was Daniel's height.
Daniel is tall.
Alison is tall (off the charts) and Daniel is following in that same path. However, with Alison, you could always see the difference between her and other children her age. With Daniel not standing up all the time or walking, it is easy to forget that he is so tall.
I was shocked almost and saddened too. I wanted to so much for Daniel to remain standing and even walk to me so that he could finally be a "normal" little boy.
I know one day Daniel will walk, I am sure of it but that knowledge doesn't take away the sadness that sometimes exists now.
Daniel is tall.
Alison is tall (off the charts) and Daniel is following in that same path. However, with Alison, you could always see the difference between her and other children her age. With Daniel not standing up all the time or walking, it is easy to forget that he is so tall.
I was shocked almost and saddened too. I wanted to so much for Daniel to remain standing and even walk to me so that he could finally be a "normal" little boy.
I know one day Daniel will walk, I am sure of it but that knowledge doesn't take away the sadness that sometimes exists now.
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