Whenever I hear "Unsinkable Ships" by Tim McGraw, I think about Maggie. I have learned to never underestimate the impossible.
She is improving in her own right. Sometimes I swear I can almost hear her using words. That would be a big thing. She definitely likes what she likes as she sits in my lap while I type this, trying to type her own stuff, infactuated by the keys and the computer.
She loves electronics and remote controls. I think it is the sounds and lights that things make that she loves so much.
At her therapy on Wednesday, I was told that the Developmental Pediatrition is going to come in and give her some sort of diagnosis. Part of me really wants to hear what that person has to say and the other half of me is so scared. There is a chance she could be diagnosed with Autistic Spectrum Disorder and not just developmental delays. That option sits in the back of my mind and I am afraid she may never get much better or be able to function well in society. I pray she can rise above this. Those are only underlying fears that I try not let control my thinking.
She has come so far and I am amazed by her. I just hope and pray she continues along this path.
Apparently, she is going to get into school next year. I am excited about that. We have a great school system here.
I love to watch her dance. She makes me smile....
Saturday, November 14, 2009
Tuesday, October 13, 2009
Maggie is making such strides in her therapy and her days at home. She seems to look at people more, in the eyes, which is a huge step. She is also making her requests known better. She brings you stuff that she wants and uses her sign language for "more" and "drink" and "eat". But she still has such a long way to go.
She still is mostly silent, making only noises and babbles when she feels like it. She is so caught up in her own little world in her mind and I so want to be a part of it that it almost hurts. For as much progress as she has made, it seems at times she reverts and things look hopeless again. I don't want to feel like that, but I want to fully know my little girl. She is an Angel and so full of life and joy. I know she has so much to give, that I can only pray that she breaks out of this to rise above her current state.
The therapists seem optimistic and I try to remain on the upwards thinking, but I know there is so much more to her than just these little glimspes we get every now and then.
She has yet to eat regularly either, which is another concern. I know the therapists address it and so do we. All we can do is continue on the course that we are. Because what she has is such a new study, there is nothing else we can do. I wish there were a cure-all fix once and for all, but science is still working on that.
I love her so much and she continues to enrich our lives. And she really is doing much better than only a year ago. So, there is always hope that keeps burning in my soul.
She still is mostly silent, making only noises and babbles when she feels like it. She is so caught up in her own little world in her mind and I so want to be a part of it that it almost hurts. For as much progress as she has made, it seems at times she reverts and things look hopeless again. I don't want to feel like that, but I want to fully know my little girl. She is an Angel and so full of life and joy. I know she has so much to give, that I can only pray that she breaks out of this to rise above her current state.
The therapists seem optimistic and I try to remain on the upwards thinking, but I know there is so much more to her than just these little glimspes we get every now and then.
She has yet to eat regularly either, which is another concern. I know the therapists address it and so do we. All we can do is continue on the course that we are. Because what she has is such a new study, there is nothing else we can do. I wish there were a cure-all fix once and for all, but science is still working on that.
I love her so much and she continues to enrich our lives. And she really is doing much better than only a year ago. So, there is always hope that keeps burning in my soul.
Sunday, September 6, 2009
More about Maggie
Maggie has a lot of doctors that she has gone through. She had a audiologist, a cardiologist, a neurologist and a geneticist. Thankfully, her audiologist and her cardiologist cleared her of any of those problems, but she still has the other two.
However it is good she does. She has also been given every blood test under the sun. Last time she went for one though, they found something. So far they are saying that it is accountable for what she has.
The packet the geneticist gave me reads like stereo instructions and is very scientific, but basically says she has a slight duplicate of chromosome number 1 in her DNA strand. It gets really technical, but it boils down to exhibited behaviors for this type of disorder are developmental delays, autistic spectrum symptoms, speech delays and larger heads. Except for the larger head (hers is average) she has all the other behaviors.
The good news is that now we have a diagnosis. The bad news is that the study into this type of disorder is so new that Maggie is actually a part of it now. The geneticist was telling me that the scientific community has just started looking into the genetics of this type of disorder and there is no real example of a sample case. So, as we treat her, we have to treat the symptoms, not the cause.
I am glad she is in the study now. Apparently it may be genetic for Robert has the same thing. They want to test Bart, Lisa and Austin as well. It is known that some people may just be carriers of the copied chromosomes and not exhibit any behaviors associated with the disorder.
I wait to see what they say about my other kids. I will keep everyone posted. I signed release forms and in any future release of information on the study, Maggie will be included.
However it is good she does. She has also been given every blood test under the sun. Last time she went for one though, they found something. So far they are saying that it is accountable for what she has.
The packet the geneticist gave me reads like stereo instructions and is very scientific, but basically says she has a slight duplicate of chromosome number 1 in her DNA strand. It gets really technical, but it boils down to exhibited behaviors for this type of disorder are developmental delays, autistic spectrum symptoms, speech delays and larger heads. Except for the larger head (hers is average) she has all the other behaviors.
The good news is that now we have a diagnosis. The bad news is that the study into this type of disorder is so new that Maggie is actually a part of it now. The geneticist was telling me that the scientific community has just started looking into the genetics of this type of disorder and there is no real example of a sample case. So, as we treat her, we have to treat the symptoms, not the cause.
I am glad she is in the study now. Apparently it may be genetic for Robert has the same thing. They want to test Bart, Lisa and Austin as well. It is known that some people may just be carriers of the copied chromosomes and not exhibit any behaviors associated with the disorder.
I wait to see what they say about my other kids. I will keep everyone posted. I signed release forms and in any future release of information on the study, Maggie will be included.
Tuesday, September 1, 2009
Backstory
There were no bells or whistles when Maggie, my youngest daughter was born. She is my third of four children, born via c-section due to two previous c-sections.
Everything went normal. She was healthy, alert, and went home with my husband and I after four days to join our family.
However, things started sending up red flags about the time she turned 7 months old. She wasn't trying to crawl or doing much of anything. Her attention to people had started to ween as well. She was more interested in objects and watching the TV for copious amounts of time.
She wasn't crawling by 11 months and things were really worrying us, so we sought outside help on what to do with her. We knew of Early Childhood Intervention(ECI) and we decided to call them.
Within the first month of them working with her, she started crawling and paying more attention. I thought for sure she would never walk, but in December of last year, around 20 months of age, she started walking. My joy was overwhelming! I knew there was more hope for her.
She is still with ECI and now goes to seperate therapy at the local Children's Hospital.
She is now 29 months old (over 2) but she still is struggling in a lot of areas. She doesn't talk and often is in her own little world.
I am writing this blog to keep people posted on her life and our working with her as she grows up, maybe to inspire others who might be going through what I am.
I want her life to be an encouragement and our family's adventures with her to be uplifting and give hope. She is an angel and a joy to have as a daughter.
Everything went normal. She was healthy, alert, and went home with my husband and I after four days to join our family.
However, things started sending up red flags about the time she turned 7 months old. She wasn't trying to crawl or doing much of anything. Her attention to people had started to ween as well. She was more interested in objects and watching the TV for copious amounts of time.
She wasn't crawling by 11 months and things were really worrying us, so we sought outside help on what to do with her. We knew of Early Childhood Intervention(ECI) and we decided to call them.
Within the first month of them working with her, she started crawling and paying more attention. I thought for sure she would never walk, but in December of last year, around 20 months of age, she started walking. My joy was overwhelming! I knew there was more hope for her.
She is still with ECI and now goes to seperate therapy at the local Children's Hospital.
She is now 29 months old (over 2) but she still is struggling in a lot of areas. She doesn't talk and often is in her own little world.
I am writing this blog to keep people posted on her life and our working with her as she grows up, maybe to inspire others who might be going through what I am.
I want her life to be an encouragement and our family's adventures with her to be uplifting and give hope. She is an angel and a joy to have as a daughter.
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