http://www.dailylocal.com/articles/2009/03/30/business/srv0000005009605.txt
SORRY, LINK WASN'T WORKING, I FIXED IT NOW!
Monday, March 30, 2009
Wednesday, March 25, 2009
Tuesday, March 24, 2009
Ryan J Catching Up On Some Reading
He grabbed this magazine after dinner and climbed up on the couch and started 'reading' it...
Monday, March 23, 2009
Friday, March 20, 2009
The Day We All Sweated...
Today was Ryans sweat test. Here's the long story of the day!
Getting There
We had planned to take the train and my mom graciously offered to drive us there. Well on the way there we found out that the bridge over the brandywine on the route we normally take is closed for construction as of this morning! So that along with the fact that Ryan puked on the way made us miss the train. So mom drove us back to our house and we jumped in the car, i sat in the back to help ryan with his puking. We also called the pedi and chop to make sure we should still go, they said this wouldn't affect the test and we might as well just do it since we're on our way. Well about the time ryan stopped puking riding in the back caught up with me and we had to pull over so i could toss my cookies. It was a long drive!!
CHOP
Once we got there we met up with my sister Katie who works in that same building. Praise God for her support, direction and explanations!!! We would have been so lost and anxious without her! We love you katie thank you so much! To do the test they put two electrodes on ryans arm and sent a current through his arm for 5 minutes to stimulate sweat. Repeat other arm. Ryan was VERY not pleased as you can see in the pics. After the stimulation they wrapped special paper on his arms to collect the sweat. He didn't like this so much either since he couldn't move his arms but dealt with it ok since we could leave that room and read books! Finally they take the test strips off and send them to the lab.
AfterMath
Katie took us down to a book drive they were having in the lower level and ryan got to pick out several books, to help make this trip a little less stressful! He promptly fell asleep once we got in the car. No more puking the rest of the day btw. Katie, Tim and I went and got food at boston market and katie very very nicely let us stay at her apt and crash until we felt good enough to make the drive home! Thank you katie again!! So now we wait, impatiently, to find out what God has for us. We will post as soon as we know.
A Note
You couldn't help but see and meet lots of other kids in the hospital (top childrens hospital - it was a great place!). I know that many of them are there for tests like ryan and others are there for surgery and even others have terminal illnesses. We only had a taste of what those families go through every day. Please pray for ALL the families at CHOP!
Getting There
We had planned to take the train and my mom graciously offered to drive us there. Well on the way there we found out that the bridge over the brandywine on the route we normally take is closed for construction as of this morning! So that along with the fact that Ryan puked on the way made us miss the train. So mom drove us back to our house and we jumped in the car, i sat in the back to help ryan with his puking. We also called the pedi and chop to make sure we should still go, they said this wouldn't affect the test and we might as well just do it since we're on our way. Well about the time ryan stopped puking riding in the back caught up with me and we had to pull over so i could toss my cookies. It was a long drive!!
CHOP
Once we got there we met up with my sister Katie who works in that same building. Praise God for her support, direction and explanations!!! We would have been so lost and anxious without her! We love you katie thank you so much! To do the test they put two electrodes on ryans arm and sent a current through his arm for 5 minutes to stimulate sweat. Repeat other arm. Ryan was VERY not pleased as you can see in the pics. After the stimulation they wrapped special paper on his arms to collect the sweat. He didn't like this so much either since he couldn't move his arms but dealt with it ok since we could leave that room and read books! Finally they take the test strips off and send them to the lab.
AfterMath
Katie took us down to a book drive they were having in the lower level and ryan got to pick out several books, to help make this trip a little less stressful! He promptly fell asleep once we got in the car. No more puking the rest of the day btw. Katie, Tim and I went and got food at boston market and katie very very nicely let us stay at her apt and crash until we felt good enough to make the drive home! Thank you katie again!! So now we wait, impatiently, to find out what God has for us. We will post as soon as we know.
A Note
You couldn't help but see and meet lots of other kids in the hospital (top childrens hospital - it was a great place!). I know that many of them are there for tests like ryan and others are there for surgery and even others have terminal illnesses. We only had a taste of what those families go through every day. Please pray for ALL the families at CHOP!
Monday, March 16, 2009
For those curious about Celiac Disease...
Thanks Laurel! - And also to anyone else who has asked about celiac disease...
i am in the process of verifying that they did test for celiac disease, but we're almost positive that they did. When he had his sigmoidoscopy they did a biopsy and did testing and the pedi said that is the ultimate celiac test. I know they tested for other things as well, it wasn't exactly easy to watch my baby go through that testing and i didn't ask all the questions that i'm sure i should/could have about all the details of what went on. At the time i just wanted to see my baby get through the day and get meds to help him... and we were all quite sleep deprived! So i will verify with the specialists themselves when we go next time but so far the doctors all believe he has been tested by the GI specialist.
i am in the process of verifying that they did test for celiac disease, but we're almost positive that they did. When he had his sigmoidoscopy they did a biopsy and did testing and the pedi said that is the ultimate celiac test. I know they tested for other things as well, it wasn't exactly easy to watch my baby go through that testing and i didn't ask all the questions that i'm sure i should/could have about all the details of what went on. At the time i just wanted to see my baby get through the day and get meds to help him... and we were all quite sleep deprived! So i will verify with the specialists themselves when we go next time but so far the doctors all believe he has been tested by the GI specialist.
Sunday, March 15, 2009
Testing For Ryan J
Tim is good with words, so i'm just going to copy and paste his words...
We are asking for your prayers for Ryan. This week, he had a doctor's appointment and his weight is still about the same as it has been for the past several months. According to the doctor, low weight is a small issue, but the fact that he is not gaining is a bigger issue. We are taking Ryan to Children's Hospital in Philadelphia next Friday, 3/20 for a sweat test to determine whether he has Cystic Fibrosis. We will get the results the following Monday, 3/23. The doctor said he does not necessarily suspect CF, but it is the next thing they want to try to rule out as we try to find the root cause.
If you are like us and don't know much about CF, you can read about it at www.cff.org or http://en.wikipedia.org/wiki/Cystic_fibrosis. From what we have read, plus what we can tell from observing Ryan and looking at family history, it does not seem "likely" that he has it, but we are still stuck between hoping for the best but bracing for the worst.
Our prayer is that it will not be CF, that the doctors would be able to find out what is actually wrong, and that we would be able to trust the Lord no matter what the outcome.
Thanks for praying with us.
In Christ,
Tim and Jen
We are asking for your prayers for Ryan. This week, he had a doctor's appointment and his weight is still about the same as it has been for the past several months. According to the doctor, low weight is a small issue, but the fact that he is not gaining is a bigger issue. We are taking Ryan to Children's Hospital in Philadelphia next Friday, 3/20 for a sweat test to determine whether he has Cystic Fibrosis. We will get the results the following Monday, 3/23. The doctor said he does not necessarily suspect CF, but it is the next thing they want to try to rule out as we try to find the root cause.
If you are like us and don't know much about CF, you can read about it at www.cff.org or http://en.wikipedia.org/wiki/Cystic_fibrosis. From what we have read, plus what we can tell from observing Ryan and looking at family history, it does not seem "likely" that he has it, but we are still stuck between hoping for the best but bracing for the worst.
Our prayer is that it will not be CF, that the doctors would be able to find out what is actually wrong, and that we would be able to trust the Lord no matter what the outcome.
Thanks for praying with us.
In Christ,
Tim and Jen
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