Finally! Today I am not sick. It's been a two week journey with what I'll refer to as "the plague." First came the virus, or maybe a bacteria I didn't inquire too deeply. It came with congestion, a runny nose (that's a technical term) and a cough. I thought it would last a day or so and then petter out. I was wrong! That night I shook with the chills and a fever. I hardly left the bed for the next three days. Then, as happens in families, someone else got sick - Matteo.
You really get a good idea of someone's personality when they're sick. It turns out that Matteo has a flair for the dramatic. I'm not terribly surprised. My daughter has the gift too. I'm certain that she got it from her dad's side of the family. While I was sick, Matteo had a man-cold. For three days he just moaned, not cried, moaned. He wouldn't sleep unless he were being held, and then only for a half-hour at a time. He would only take a bottle, no solid food. And at all times he wanted his back to be rubbed gently. He was rather pitiful and it was very hard not to feel sorry for him.
By the end of the weekend I was starting to feel better. My fever had broken and I was out of bed. Things were looking up. Except that while the fever and cough were gone my sinus' were getting worse. By Tuesday morning a visit to the doctor confirmed a sinus infection for me and an ear infection for Matteo. Yippee! I briefly wondered if it could get worse and then put that thought out of my mind. Things can always get worse but I wanted things to get better. With the help of modern medicine, several dozen sinus rinses and another week we recovered. Fortunately neither my husband or daughter got the plague and it looks like were in the clear. Now all I have to do is catch up with all the things that I haven't done in the last two weeks. It almost makes me want to climb back in bed.
Tuesday, April 5, 2011
Wednesday, March 23, 2011
Evaluations
These last few weeks have been ones of evaluation for Matteo. He's had assessments by all three of his therapists, his Regional Center advocate, the physiologist, the opthamologist and the gastroenterologist. It been 6 1/2 hours of meetings and over 200 miles of driving. Meetings such as these are always fraught with emotion for me. Will the news be good? Will he need more intervention/therapy/surgery? Will we need to see another specialist? Will I get a hint at the future? As one might expect when dealing with a child the news is always "yes" and "no."
First was the evaluation by the Early Childhood Developmental Therapist. She did a thorough evaluation of how Matteo is doing with his gross and fine motor skills, his cognitive skills and his communication skills as they compare to normally developing children. I didn't come as a surprise to me that Matteo is behind, but I was taken aback when I read that he is testing at the 8 to 9 month level for most of his skills. It's only in communication that he jumps to the level of a 12 month child. He's 20 months old now, so he's about a year behind in most skills. The scientific/rational side of my brain knows that this is expected. After all he does have Cerebral Palsy. But the emotional side of my brain was surprised. He has made such strides recently with cruising around the coffee table and starting to say words. He's also much more expressive now. He has definite likes and dislikes and he has no problem with letting you know when he's had enough of something. I guess I was hoping for a better result. The upside was that the Regional Center Advocate was very happy with his progress and said that he had met all of his goals.
The next evaluation was with the occupational therapist, the physical therapist and the physiologist. This was the big evaluation for how he was progressing with his muscle skills and how well he was responding to the therapy. Again it was a mixed bag. His fine motor skills are progressing and he's very motivated to get up to a standing position, but he is having a lot of difficulty with his legs. His adductors, the muscles on the insides of the thighs are very, very tight. So tight that when he stands, his legs automatically cross. His hamstrings, the muscles that connect at the base of the hips and the top of the lower leg at the back, are also very tight. They tilt his pelvis backwards and cause him to have a perpetually bent knee. Imagine that you are trying to stand on your toes, with your knees bent, back curved and legs crossed. Now try to walk. It's almost impossible.
What can we do? There are three options. One, we can continue on with just therapy and see if we can get his muscles to release. This is the least invasive method, but it will delay his being able to walk considerably and he will likely lose ground with his balance and other skills. Two, we can do surgery to release his adductors and hamstrings. This should make a very big difference. He would probably progress very well. The downside is that he would likely have to have the surgery again. With my daughter, we don't even think about surgeries. With Matteo, I just want to limit them. The middle of the road is Botox. No, not for me and the new and deeper worry lines on my face, but for Matteo in order to try and release his tight muscles. He would get a sizable injection, under a general anesthetic, to the muscles on both legs. For the following two to three months, the Botox has the effect of partially paralyzing those muscles. In that window, we would do extra therapy to try to both lengthen the tight muscles and strengthen the other leg muscles that he should be using to stand. The hope is that this would enable us to we can stave off surgery until he is at least 6, or until he needs surgery for his hips. His hips are a totally different matter that the orthopedist says we'll need to deal with in the future. Right now we're focusing on the muscles.
After lengthly discussions with Patrick and my sister, the family opthomologist, we've decided on the Botox. As counter-intuitive as it is to inject your baby with a deadly toxin, it really is his best option. We've put in the request to the insurance. When we get it back, if it's approved, we'll get an appointment for the injections. I don't think all of this will happen any time soon as they only do this procedure twice a month at the hospital. In the meantime I have to figure out how I'm going to add several more therapy sessions a week, both at home and at the therapy unit, and still get things done. As it is now I struggle to do it all, and I'm behind on most things. I think in a way this is God telling me that it is time to simplify my life. I don't simplify well, but I am going to have to if I am to meet the coming challenges.
First was the evaluation by the Early Childhood Developmental Therapist. She did a thorough evaluation of how Matteo is doing with his gross and fine motor skills, his cognitive skills and his communication skills as they compare to normally developing children. I didn't come as a surprise to me that Matteo is behind, but I was taken aback when I read that he is testing at the 8 to 9 month level for most of his skills. It's only in communication that he jumps to the level of a 12 month child. He's 20 months old now, so he's about a year behind in most skills. The scientific/rational side of my brain knows that this is expected. After all he does have Cerebral Palsy. But the emotional side of my brain was surprised. He has made such strides recently with cruising around the coffee table and starting to say words. He's also much more expressive now. He has definite likes and dislikes and he has no problem with letting you know when he's had enough of something. I guess I was hoping for a better result. The upside was that the Regional Center Advocate was very happy with his progress and said that he had met all of his goals.
The next evaluation was with the occupational therapist, the physical therapist and the physiologist. This was the big evaluation for how he was progressing with his muscle skills and how well he was responding to the therapy. Again it was a mixed bag. His fine motor skills are progressing and he's very motivated to get up to a standing position, but he is having a lot of difficulty with his legs. His adductors, the muscles on the insides of the thighs are very, very tight. So tight that when he stands, his legs automatically cross. His hamstrings, the muscles that connect at the base of the hips and the top of the lower leg at the back, are also very tight. They tilt his pelvis backwards and cause him to have a perpetually bent knee. Imagine that you are trying to stand on your toes, with your knees bent, back curved and legs crossed. Now try to walk. It's almost impossible.
What can we do? There are three options. One, we can continue on with just therapy and see if we can get his muscles to release. This is the least invasive method, but it will delay his being able to walk considerably and he will likely lose ground with his balance and other skills. Two, we can do surgery to release his adductors and hamstrings. This should make a very big difference. He would probably progress very well. The downside is that he would likely have to have the surgery again. With my daughter, we don't even think about surgeries. With Matteo, I just want to limit them. The middle of the road is Botox. No, not for me and the new and deeper worry lines on my face, but for Matteo in order to try and release his tight muscles. He would get a sizable injection, under a general anesthetic, to the muscles on both legs. For the following two to three months, the Botox has the effect of partially paralyzing those muscles. In that window, we would do extra therapy to try to both lengthen the tight muscles and strengthen the other leg muscles that he should be using to stand. The hope is that this would enable us to we can stave off surgery until he is at least 6, or until he needs surgery for his hips. His hips are a totally different matter that the orthopedist says we'll need to deal with in the future. Right now we're focusing on the muscles.
After lengthly discussions with Patrick and my sister, the family opthomologist, we've decided on the Botox. As counter-intuitive as it is to inject your baby with a deadly toxin, it really is his best option. We've put in the request to the insurance. When we get it back, if it's approved, we'll get an appointment for the injections. I don't think all of this will happen any time soon as they only do this procedure twice a month at the hospital. In the meantime I have to figure out how I'm going to add several more therapy sessions a week, both at home and at the therapy unit, and still get things done. As it is now I struggle to do it all, and I'm behind on most things. I think in a way this is God telling me that it is time to simplify my life. I don't simplify well, but I am going to have to if I am to meet the coming challenges.
Monday, February 28, 2011
Time Just To Be
I left on Friday afternoon and returned on Sunday. I spent three days and two nights without having to be MOM. Now I love being a mom. I am at my core a nurturer and the joy that I get in helping my children grow and seeing my son progress is something that I never quite experienced in my work. But when you spend your days caring for others, especially those that need a lot of care, you can forget to care for yourself. Your identity becomes wrapped up in the other. I am Mom, Matteo's Mom and Malia's Mom. I am rarely just Genevieve. This was my time to just be me.
When I left the house on Friday I told myself that for the next few days I would not worry about the kids, Patrick is a more than capable father. I would not worry about my friends with me at the conference, they are all capable adults. I would not rush or worry about being at the right place at the right time or seeing everything. I would take my time and enjoy each moment. If I missed a beautiful skein of hand-dyed yarn it would be ok. There would be more yarn next year. And as you can see I found plenty of beautiful hand-dyed yarn.
It was easier than I thought to let go of being Mom for a few days. I left the worry and stress that goes with it at home and for three whole days I was just me. I was still a mother, you can never give that up, but I was also a knitter, a friend and a woman. I was able to visit with those parts of me that aren't wrapped up in being Mom. It was refreshing. I came back happy and recharged. It reminded me of the importance of taking time just to be. I will endeavor to visit with me more often and not wait until the next knitting convention comes along. I will take more time just to be.
Friday, February 18, 2011
Kids Say The Darndest Things
Computer technology can be wonderful and maddening. This week it's been maddening. In the midst of writing this post my 5 year-old computer gave up the ghost. Try as I might, I could not get everything working. Fortunately I have another laptop computer, a donation from my Dad. It works well if you don't count the fact that the screen is broken. But, I was able to hook it up to an old desktop screen that I have and now (six days later) I'm back in business.
While I generally write about my journey with my son Matteo, occasionally my daughter Malia says, or does, something that I just have to share. This was one of those weeks. My daughter Malia is generally described as a "lovely girl." And she is. She can be the sweetest most generous eight-year-old you've ever met. She has no lack of self-esteem and is confident in her ability to express herself. This she does often, or more precisely, whenever she is awake. Malia loves sound and is happy to supply it when it is in deficit, like when I'm sitting quietly with a cup of tea. She talks, sings, hums, drums, taps and has now taken up playing the violin. She is a whirlwind of sound and energy. She also says the darndest things.
Malia is in third-grade, and this week announced that she was selected to be on the student council for her grade. She was thrilled to be part of the group that decides when "crazy hair day" or "wear your pajamas to school day" will be. I asked her how they select kids for student council at her school. This is what she said:
"Well my teacher picks the two smartest kids in our grade. But they weren't available, so me and (friend who won't be named) are doing it."
Really? The two smartest kids weren't available so Malia got it? How does a mother respond to that? Now it's true that Malia is not the smartest kid in the grade. She still struggles with math and it's also true that "being the best" is not her goal. Still, I was surprised by her frank admission. In deference to her teacher, I'm sure that she did not put it this way when she picked my daughter for student council. But still she was very proud of herself so Patrick and I did our best not to laugh.
As I said, Malia still struggles with math. Her teacher has been working with her and has asked us to concentrate on her multiplication. So, every night for the last few weeks we've been going over the multiplication tables. I thought she was finally getting them memorized. I was wrong. Every week they have a test that checks their understanding. This week Malia said she did really well on the writing. "Great!" I said. "How was the math?" This is what she said:
"It was good, but I still have to work on my multiplication."
So I asked her which multiplication tables she still needed some help on. Her answer:
"Well, mostly the bigger numbers like 5 to 12. And the 3's. I'm good with the 4's."
Ok, so at least she's got the 0's, 1's, 2's and 4's. Only nine more to learn. (sigh!!) I suppose honesty is a good thing.
When it comes to boys honesty is a very good thing. Which leads me to the thing I most did not expect to hear:
"Mom, (boy who won't be named) gave me this note. He wants to go on a date! I said yes."
What? A date? This was very unexpected. So I asked Malia what a date was, given that she's 8. This is what she said:
"You know Mom, it's what teenagers do."
I am sure that the image in her mind is vastly different than the image in my mind. But just to be positive that we were on the same page I informed Malia that she was welcome to go on a "play date" with him to get an ice cream and sit in the plaza with us and his parents. She then informed me that it was not a date if parents were there. I informed her that it was not a "date" and parents would always be there. I am totally not ready for this growing up thing. Fortunately the talk of "date" disappeared right after Valentines Day. Thank God, because I am not ready for this growing up thing!
This weekend I am off to a Knitting Convention. I've never been to one, but I am going with twelve friends from my knitting group and NO CHILDREN! I am looking forward to a weekend of just being me!
While I generally write about my journey with my son Matteo, occasionally my daughter Malia says, or does, something that I just have to share. This was one of those weeks. My daughter Malia is generally described as a "lovely girl." And she is. She can be the sweetest most generous eight-year-old you've ever met. She has no lack of self-esteem and is confident in her ability to express herself. This she does often, or more precisely, whenever she is awake. Malia loves sound and is happy to supply it when it is in deficit, like when I'm sitting quietly with a cup of tea. She talks, sings, hums, drums, taps and has now taken up playing the violin. She is a whirlwind of sound and energy. She also says the darndest things.
Malia is in third-grade, and this week announced that she was selected to be on the student council for her grade. She was thrilled to be part of the group that decides when "crazy hair day" or "wear your pajamas to school day" will be. I asked her how they select kids for student council at her school. This is what she said:
"Well my teacher picks the two smartest kids in our grade. But they weren't available, so me and (friend who won't be named) are doing it."
Really? The two smartest kids weren't available so Malia got it? How does a mother respond to that? Now it's true that Malia is not the smartest kid in the grade. She still struggles with math and it's also true that "being the best" is not her goal. Still, I was surprised by her frank admission. In deference to her teacher, I'm sure that she did not put it this way when she picked my daughter for student council. But still she was very proud of herself so Patrick and I did our best not to laugh.
As I said, Malia still struggles with math. Her teacher has been working with her and has asked us to concentrate on her multiplication. So, every night for the last few weeks we've been going over the multiplication tables. I thought she was finally getting them memorized. I was wrong. Every week they have a test that checks their understanding. This week Malia said she did really well on the writing. "Great!" I said. "How was the math?" This is what she said:
"It was good, but I still have to work on my multiplication."
So I asked her which multiplication tables she still needed some help on. Her answer:
"Well, mostly the bigger numbers like 5 to 12. And the 3's. I'm good with the 4's."
Ok, so at least she's got the 0's, 1's, 2's and 4's. Only nine more to learn. (sigh!!) I suppose honesty is a good thing.
When it comes to boys honesty is a very good thing. Which leads me to the thing I most did not expect to hear:
"Mom, (boy who won't be named) gave me this note. He wants to go on a date! I said yes."
What? A date? This was very unexpected. So I asked Malia what a date was, given that she's 8. This is what she said:
"You know Mom, it's what teenagers do."
I am sure that the image in her mind is vastly different than the image in my mind. But just to be positive that we were on the same page I informed Malia that she was welcome to go on a "play date" with him to get an ice cream and sit in the plaza with us and his parents. She then informed me that it was not a date if parents were there. I informed her that it was not a "date" and parents would always be there. I am totally not ready for this growing up thing. Fortunately the talk of "date" disappeared right after Valentines Day. Thank God, because I am not ready for this growing up thing!
This weekend I am off to a Knitting Convention. I've never been to one, but I am going with twelve friends from my knitting group and NO CHILDREN! I am looking forward to a weekend of just being me!
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