Wednesday, January 16, 2008
Ryan has a teacher!
A teacher with MRDD called today and said she will be Ryan's teacher. She is going to come out next week to go over some paperwork. Then she will do some home visits along with a speech therapist. Once we get through all of that, Ryan will qualify for a center based school where he will go 3-4 days a week and receive teaching and therapies as well. I am so relieved but so sad that my baby will be going to school so young. He needs this so badly though so I hope we don't have to wait too much longer.
Tuesday, January 15, 2008
Another day, another doctor.
Ethan saw the ENT today. I love this doctor! He is the one that removed my salivary gland a couple of years ago.
Anyway, he looked at Ethan's nose and noticed some scabbed blood vessels. Since we haven't seen the hematologist yet for more testing on his possible blood clotting disorder, he suggests we keep Ethan's nose moist and run a humidifier in his room. He does think that at least one side of his nose will need to eventually be cauterized but doesn't want to do that until we have more testing done. Cauterizing it, while having a clotting disorder, could make it ten times worse. So for now, we will stick with what we are doing and if he has any more bloody noses that bleed for more than 5 minutes, I am to call him.
We see the hematologist next Friday.
Anyway, he looked at Ethan's nose and noticed some scabbed blood vessels. Since we haven't seen the hematologist yet for more testing on his possible blood clotting disorder, he suggests we keep Ethan's nose moist and run a humidifier in his room. He does think that at least one side of his nose will need to eventually be cauterized but doesn't want to do that until we have more testing done. Cauterizing it, while having a clotting disorder, could make it ten times worse. So for now, we will stick with what we are doing and if he has any more bloody noses that bleed for more than 5 minutes, I am to call him.
We see the hematologist next Friday.
Monday, January 14, 2008
Welcome to Holland
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Thursday, January 10, 2008
Autism fundraiser
The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed the funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.
It only takes a few minutes of your time.
Click here
It only takes a few minutes of your time.
Click here
Wednesday, January 9, 2008
Let the countdown begin!
We are going to see the Big Mouse and Ethan can't wait! I told him after Christmas we could start a countdown.
There are 9 of us going so it will be crazy but we are really looking forward to taking a family vacation.
There are 9 of us going so it will be crazy but we are really looking forward to taking a family vacation.
Friday, January 4, 2008
So it seems the boys are feeling better. Ryan's sinus infection has cleared up nicely and he is on the mend. Ethan seems to have escaped the stomach bug and his pink eye is all clear.
I did take Ethan to the doctor yesterday for his bloody noses. Because it was bleeding out of both nostrils, she ordered some blood work and referred us to an ENT. I took Ethan for his blood draw last night and you would think that since he has to have it done a few times a year for his hypothyroidism that it would get a big easier, but I swear it gets harder and harder. He does great until he sees the needle and then all hell breaks loose. The phlebotomists at Children's are so wonderful with him....gentle and fast.
The doctor called this morning with the results. I should have known something was off since the doctor called and not just the nurse. His CBC & platelet count came back normal but his PPT test (I think that is the name of it----the one that tests for clotting) is abnormal. Normal range was up to 36 and Ethan's was 40. Our pediatrician already spoke with the Hematology clinic at Children's to see what the next step should be and they said that it warrants more testing so we will be seeing them. The nurse and I have been playing phone tag but I expect to get the appointment made today. Hopefully we won't have to wait too long.
I did take Ethan to the doctor yesterday for his bloody noses. Because it was bleeding out of both nostrils, she ordered some blood work and referred us to an ENT. I took Ethan for his blood draw last night and you would think that since he has to have it done a few times a year for his hypothyroidism that it would get a big easier, but I swear it gets harder and harder. He does great until he sees the needle and then all hell breaks loose. The phlebotomists at Children's are so wonderful with him....gentle and fast.
The doctor called this morning with the results. I should have known something was off since the doctor called and not just the nurse. His CBC & platelet count came back normal but his PPT test (I think that is the name of it----the one that tests for clotting) is abnormal. Normal range was up to 36 and Ethan's was 40. Our pediatrician already spoke with the Hematology clinic at Children's to see what the next step should be and they said that it warrants more testing so we will be seeing them. The nurse and I have been playing phone tag but I expect to get the appointment made today. Hopefully we won't have to wait too long.
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