This week has been really busy but good! We have found a few nurses that we feel are going to be a really great fit to help out at home. They are very sensitive to the fact that this is our time with Kaitlyn too and that we aren't looking for someone to take over, just to help out where we need it.
Kaitlyn has had episodes off and on all week. It's been a real roller coaster ride but we are doing our best to keep her comfortable. Even setting an alarm to get up at 2am every night to give her more medicine! At least I have my phone set to play a harp at 2am and not a loud beep! :-)
October is Niemann-Pick Awareness Month. Many people have asked how they can help out and here is an easy way to help! The Niemann-Pick Disease Foundation has an 11-11-11 challenge. Each person gets 11 people to donate $11 to the foundation and then encourage those 11 people to also get 11 people to donate $11 and so on and so forth. Obviously, they are more than welcome to donate more than $11. Here is a link to the donation page: Click here to donate to the foundation You can also donate by check (payable to NNPDF) or cash. On the foundation website, they have other resources to help get started. 11-11-11 Challenge Homepage
You can also donate on our blog for the challenge using Paypal.
IMPORTANT: Please make sure you put in honor of 'Kaitlyn Bourgeault' with your donation. The donations will be dedicated to the type of Niemann-Pick that she has, which is Type A, versus going into a general fund. Since there are only 5 children with Type A in the US, it is SO important that we raise money to help them fund research for this type, which is also the most severe type.
Hope everyone has a great weekend! Happy Friday!
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| A few minutes without the oxygen tube on |
Kaitlyn has had episodes off and on all week. It's been a real roller coaster ride but we are doing our best to keep her comfortable. Even setting an alarm to get up at 2am every night to give her more medicine! At least I have my phone set to play a harp at 2am and not a loud beep! :-)
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| Super duper fly! |
October is Niemann-Pick Awareness Month. Many people have asked how they can help out and here is an easy way to help! The Niemann-Pick Disease Foundation has an 11-11-11 challenge. Each person gets 11 people to donate $11 to the foundation and then encourage those 11 people to also get 11 people to donate $11 and so on and so forth. Obviously, they are more than welcome to donate more than $11. Here is a link to the donation page: Click here to donate to the foundation You can also donate by check (payable to NNPDF) or cash. On the foundation website, they have other resources to help get started. 11-11-11 Challenge Homepage
You can also donate on our blog for the challenge using Paypal.
IMPORTANT: Please make sure you put in honor of 'Kaitlyn Bourgeault' with your donation. The donations will be dedicated to the type of Niemann-Pick that she has, which is Type A, versus going into a general fund. Since there are only 5 children with Type A in the US, it is SO important that we raise money to help them fund research for this type, which is also the most severe type.
Hope everyone has a great weekend! Happy Friday!
I am praying for your little princess every day. You and your family are in my thoughts and prayers every day.
ReplyDeleteTake care & God Bless.
Kathy Lane- board member