We are all still here!
It has been busy, of course, but we are here. We have been trying to keep up with day to day work, school and extra activities. For the most part all is well.
We are very glad to be out of winter and into spring. It was a looooong winter. At the end of February we had a bit of an unpleasant week and weekend when Daniel got sick. It is difficult to know exactly what is wrong because Daniel still doesn't communicate his needs or wants all the time with us. I ended up taking him to the doctor the day he came home early from school in which the doctor said it was just a sore throat (not strep). The next day he spiked a fever of 104 so back to the doctor he went. By Friday of that week he had not been eating or drinking all week so the doctor admitted him to the hospital for IV fluids. It took them four sticks until they found a vein on him. Four times he had to be held down by 5 adults (yes he is that strong)! It was nerve wracking for me and for my mom and dad. I stayed with him through the night and the next day he looked 100% better and finally started eating and drinking. Poor little buddy. Jason and I were also sick that same week. Turns out I had bronchitis and I suspect Jason did as well. It was not fun.
We are much better now and thoroughly enjoying the warm weather. We have seen a tremendous increase in Daniel's communication skills these last few weeks. He is saying more words and signing appropriately. He is doing much better in verbalizing his wants and needs. He is also doing a little walking in what is called a gait trainer.
We are, as always, constantly impressed by Daniel. He is super smart, sweet and loving. He LOVES watching and playing with his sister who, likewise, LOVES to play with him.
Our two adorable children are the most loving brother and sister we've ever seen. They continue to be our pride and joy.
Tuesday, March 23, 2010
Tuesday, January 19, 2010
Feeling Sorry for Her
The other day we were driving in the car and asked Alison to give Daniel a snack. Because of his still difficulty with chewing, she knows that she needs to break off small pieces and give it to him in his hand. She is also aware that she needs to have him chew what he has in his mouth before giving him any more.
She is only 6 years old.
I feel bad for her.
Never mind that she doesn't notice anything wrong with that. He is her little brother and she is the big sister who, from day one, wants to help. I know all big brothers and sisters are put in charge. I know that the oldest has more responsibility, I get that. What I don't like is that she will probably never get a break from that responsibility. Unlike other older siblings whose baby brother or sister gets bigger and can eventually take care of themselves, Alison's little brother may always need her help.
Of course we'll be there and it won't all fall on her shoulders but in fact someday it might.
She gets sad too. She wonders too why her little brother doesn't walk. We try to remind her and say, "don't you remember his brain doesn't work like other children's brains." How can we expect this little six year old girl to understand something that we don't understand?
In the end she is six, but she has had to grow up more than she will ever know.
She is only 6 years old.
I feel bad for her.
Never mind that she doesn't notice anything wrong with that. He is her little brother and she is the big sister who, from day one, wants to help. I know all big brothers and sisters are put in charge. I know that the oldest has more responsibility, I get that. What I don't like is that she will probably never get a break from that responsibility. Unlike other older siblings whose baby brother or sister gets bigger and can eventually take care of themselves, Alison's little brother may always need her help.
Of course we'll be there and it won't all fall on her shoulders but in fact someday it might.
She gets sad too. She wonders too why her little brother doesn't walk. We try to remind her and say, "don't you remember his brain doesn't work like other children's brains." How can we expect this little six year old girl to understand something that we don't understand?
In the end she is six, but she has had to grow up more than she will ever know.
Thursday, December 31, 2009
Predictions
I wanted so bad to make a prediction for this new year. I stopped short of coming right out and saying it so as not to jinx myself or especially Daniel.
I would love to be able to predict so many things for him. For the new year brings new hope that maybe this year he will walk, maybe this year he will talk, maybe this year we will know better how to care for our son.
In so many ways I have always thought of the new year as a new promise. A fresh start. Now we can wipe the slate clean and start over.
However, in Daniel's case I realize that it is a process and a continuation and in the new year we will see changes and improvement in all areas of growth, but that no one year will define his progress.
For Daniel and for all of us, it is the culmination of what has come before that sets the stage for what is to come.
2010 will be a good year, but it will be the same type of year with ups and downs, highs and lows, happiness and sadness, but most importantly a tremendous amount of love.
I would love to be able to predict so many things for him. For the new year brings new hope that maybe this year he will walk, maybe this year he will talk, maybe this year we will know better how to care for our son.
In so many ways I have always thought of the new year as a new promise. A fresh start. Now we can wipe the slate clean and start over.
However, in Daniel's case I realize that it is a process and a continuation and in the new year we will see changes and improvement in all areas of growth, but that no one year will define his progress.
For Daniel and for all of us, it is the culmination of what has come before that sets the stage for what is to come.
2010 will be a good year, but it will be the same type of year with ups and downs, highs and lows, happiness and sadness, but most importantly a tremendous amount of love.
Thursday, December 17, 2009
Running Dreams
I have dreams and I know that Jason does as well as everyone else in my family. I have dreams of Daniel running.
It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but doesn't put it all together and realize that he can do both. It always seems to me to be so real and true and even second nature for him to run in my dream.
When I wake up I am often confused and have to remind myself of the reality of the situation. Often I can shrug it off and just move on, but there are some times when I just become very sad.
I just want one of my dreams to come true someday, just one.
It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but doesn't put it all together and realize that he can do both. It always seems to me to be so real and true and even second nature for him to run in my dream.
When I wake up I am often confused and have to remind myself of the reality of the situation. Often I can shrug it off and just move on, but there are some times when I just become very sad.
I just want one of my dreams to come true someday, just one.
Thursday, November 26, 2009
Thanksgiving Day
I am thankful for so many things this year.
First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!
Next, I am so thankful for my children who are both healthy and happy and simply wonderful!
I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.
I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.
I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.
Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.
In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.
Happy Thanksgiving everyone!
First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!
Next, I am so thankful for my children who are both healthy and happy and simply wonderful!
I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.
I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.
I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.
Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.
In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.
Happy Thanksgiving everyone!
Friday, November 6, 2009
Wheelchair Bound
Daniel is thoroughly enjoying school. He loves going on the bus and from the daily reports we get, it appears he is almost always smiling and having a great time at school. Really nothing more that a parent could ask for.
As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his daily report, we found a note asking us to set up a time to meet with the wheelchair vendor. This has struck a chord with me. It is not that we all don't believe that someday Daniel will walk, because we do. It is more that he is not walking now and the bigger he gets (and he is a big boy) the harder it is to move him and truthfully no stroller is big enough for him.
I realize all of this and if it were anyone else's child I would encourage those parents to make themselves and their child more comfortable. But it is not anyone else, it is us and it is Daniel. Jason--ever the positive one in this relationship reminded me that it is not a life sentence and that one day Daniel will walk. My biggest fear is that Daniel will think we are giving up on him. We are so not! The last thing we would ever do is give up on our boy. Our boy who will one day very soon be walking around and tearing the place up.
As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his daily report, we found a note asking us to set up a time to meet with the wheelchair vendor. This has struck a chord with me. It is not that we all don't believe that someday Daniel will walk, because we do. It is more that he is not walking now and the bigger he gets (and he is a big boy) the harder it is to move him and truthfully no stroller is big enough for him.
I realize all of this and if it were anyone else's child I would encourage those parents to make themselves and their child more comfortable. But it is not anyone else, it is us and it is Daniel. Jason--ever the positive one in this relationship reminded me that it is not a life sentence and that one day Daniel will walk. My biggest fear is that Daniel will think we are giving up on him. We are so not! The last thing we would ever do is give up on our boy. Our boy who will one day very soon be walking around and tearing the place up.
Tuesday, October 6, 2009
School days
Each day, Daniel's teacher sends home a note to let us know about his day. Today's note made me grin widely:
Daniel had a good day today. He has a sensory group with our therapists and worked on colors and fall leaves. He also visited the library. His favorite time today was by far enjoying lunch with his friends. He laughed and laughed as they shared looks. He also said POPCORN very clearly during lunch.
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