Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory until you see your child overcoming some of those challenges. http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
So true, yesterday was a day at church and I listened while I heard another boy say, "I want to go in there." My son was already in there, but not because he asked, because he tried to get in there, so I picked him up and put him in there. As I listened to this child, who was removed from the sanctuary because his Mother didn't put him in the baby area....a certain sadness came over me, my son can't or won't speak many words and is older than this boy.
Guessing what a child wants as they attempt to let you know there is something that they want but do not have the words for it, is a trial. I long for the day when I can ask my son, what flavor ice cream do you want?
Monday, April 2, 2012
Wednesday, March 14, 2012
Just sad
There is no good-morning, no words, no questions, just silence. No conversation, no sharing of thoughts, do I say you are less than a person, less of the norm you are. I get so tired of talking and not having a conversation.
Monday, March 5, 2012
MRI
Whew what a day that was. Now remember I am talking to other parents and the doctors have had little communication with me about this MRI, a slip was mailed, but it was lost so I had to call and find out what my son could eat. He could eat until 5am and drink clear liquids until 10am.
After loading him up on apple juice, 4 boxes and he was happy not to eat food, my Mom came from 2 plus hours away. We loaded Nate up and drove 25 minutes to the Children's hospital. It was raining of course, to add to the dreary day of doing something I wasn't used to doing.
Upon his arrival he didn't want to leave his stroller, and he hated the arm band. (they put it on his right arm which both my Mother and I thought there should be a note made to nurses that arm bands always go to the less dominate hand....so he is screaming about that.) Some cream comes out and they put a huge blob of this stuff on his arm and a plastic bubble with sealed sticky around it....at this point I ask when he will be given gas. "Oh we don't do that." Nurse says. "well when does that happen?" Nurse,"that isn't done in this facility." Oh great so two bubble filled with gunk and that means you are all ready preparing for one needle to fail....oh this is not good!!! The nurse leaves me to think about it, umm after trying to call my husband and not getting ahold of him, I make the choice of NO, my son will not go through this so they can run an MRI.
So we left, mission not accomplished, but another one made. I am in control of what does happen to this little boy, the choices I make form his future. For now he will continue at preschool, the answers from medical stuff will have to happen one day, but for now fly my little boy and run, and play, and be happy.
Tomorrow Dr. Bray will come to your preschool and evaluate your speech and if they don't give you special classes they are idiots.
After loading him up on apple juice, 4 boxes and he was happy not to eat food, my Mom came from 2 plus hours away. We loaded Nate up and drove 25 minutes to the Children's hospital. It was raining of course, to add to the dreary day of doing something I wasn't used to doing.
Upon his arrival he didn't want to leave his stroller, and he hated the arm band. (they put it on his right arm which both my Mother and I thought there should be a note made to nurses that arm bands always go to the less dominate hand....so he is screaming about that.) Some cream comes out and they put a huge blob of this stuff on his arm and a plastic bubble with sealed sticky around it....at this point I ask when he will be given gas. "Oh we don't do that." Nurse says. "well when does that happen?" Nurse,"that isn't done in this facility." Oh great so two bubble filled with gunk and that means you are all ready preparing for one needle to fail....oh this is not good!!! The nurse leaves me to think about it, umm after trying to call my husband and not getting ahold of him, I make the choice of NO, my son will not go through this so they can run an MRI.
So we left, mission not accomplished, but another one made. I am in control of what does happen to this little boy, the choices I make form his future. For now he will continue at preschool, the answers from medical stuff will have to happen one day, but for now fly my little boy and run, and play, and be happy.
Thursday, March 1, 2012
Tired
My son's condition is so minor in many ways, but major for me. I am tired trying to get ready for his MRI. If there is one thing this condition does it is to make me more sympathetic to parents of children with disabilities.
Nate can somewhat speak, their are children who have no words. I was listening to a two year old girl yesterday and missing those baby conversations I should of long since had with my son. I hope he begins to put words together soon.
He's a happy little boy and active, for this I am thankful, but I am also tired.
Nate can somewhat speak, their are children who have no words. I was listening to a two year old girl yesterday and missing those baby conversations I should of long since had with my son. I hope he begins to put words together soon.
He's a happy little boy and active, for this I am thankful, but I am also tired.
from wikipedia
Hemihypertrophy
From Wikipedia, the free encyclopedia
Hemihypertrophy is a condition in which one side of the body or a part of one side is larger than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis, a curvature of the spine. There are two main surgical options for the treatment of hemihypertrophy, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally. Hemifacial hyperplasia is believed to be a minor form of hemihypertrophy.[1]
From Wikipedia, the free encyclopedia
Hemihypertrophy is a condition in which one side of the body or a part of one side is larger than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis, a curvature of the spine. There are two main surgical options for the treatment of hemihypertrophy, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally. Hemifacial hyperplasia is believed to be a minor form of hemihypertrophy.[1]
Wednesday, February 29, 2012
MRI
tomorrow is the big day for Nate, he'll be sedated and given an MRI. I think they should be able to tell more from this than most tests. He can't eat after 5am, drink clear liquids after 10am.....11am he needs to be there and the MRI is run at 1pm.
Pre-school
yeppers, I enrolled him, mostly to see if he got any better at talking. He at least is listening and doing what he should be doing for the most part. He is following the lead of the other kids, which won't be an issue for a while yet. He is with mostly girls so this is another plus.
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