We are very busy over here in the Nolan household! Caleb is loving the nice summer days! He wants to play outside all the time. We go to the neighborhood pool at least a couple times per week. I love that it is just 2 blocks down the street. I am also very thankful that Caleb has been in swim lessons since he was about a year old. He can't actually swim...but he gets the idea of the water...hold your breath, scoot along the wall, isn't afraid, and etc. It makes it easier since I am just one parent and I have two kiddos in the water. Haley loves the water as well. We do not have her in swim lessons because we learned that at her age we can do a lot of it on our own right now. Caleb on the other hand is in preschool level swim lessons and is in the water without Shane or I, just his instructor and his classmates are in the water.
I just found a place today that has soccer for the little kids. So starting in August we will have Caleb in soccer. I am so excited!! I will officially be the soccer mom in the mini-van!! I really am excited to get Caleb involved in sports.
Haley, oh Haley. This little girl is my little pistol. She has been pulling herself up onto furniture for a few weeks now. But yesterday she started to try to stand by herself without holding onto the furniture. And today she was in her walker and dropped her care bear and said the famous "uh oh". Unreal how fast she has become mobile and is constantly changing and growing. She is EIGHT months yesterday!!!!!! Haley doesn't like to cuddle too much anymore. When you try to cuddle with her she tries to push away from you because she has places to be and things to do!
For those of you who are unaware; the CF Foundation has been making unbelievable strides in their research for drug or therapy that would make CF much more manageable or possibly cured. One VERY promising drug is in phase 2 of it's research. There are 3 total phases until it is released to patients. This particular drug is known as the VX-770. It is targeted toward the CF population that has G511D as one of their mutations. Only about 3-4% of all CF patients carry this specific mutation and Caleb is one of them. This drug has shown unbelievable and never seen before results up to this point. Even though it is only targeting a specific mutation (G511D) it is a gateway to several other mutations. Research has already started for other mutations. My prayers are of so much hope, so much praise, so much rejoice, and just amazement. I have been looking all over my articles about the research that is being done (because of course I am following every move this drug makes) and I know that in one of my articles I read a prominent person (researcher or CFF representative) state that we all knew the day we found a cure for CF there would be a big party, and the person in the article said "so we should maybe start looking at invitations". I wish I could reference this article-but it is late as usual and I cannot find it. I wish I could put down in words how a mother feels when she reads something like this. Or how a mother feels when she finds out that not only is this drug in research but that her son's CF doctor is on the front lines of this research. The research is not something taking place millions of miles away-but the clinical trials are being done right here at the Children's Hospital that we visit at least once every 90 days. All that I can say is the Lord is amazing. He makes the blind see and when you thought there was only one set of footprints it was because he was carrying you. I hope that makes sense to you-it makes perfect sense to me.
I just found a place today that has soccer for the little kids. So starting in August we will have Caleb in soccer. I am so excited!! I will officially be the soccer mom in the mini-van!! I really am excited to get Caleb involved in sports.
Haley, oh Haley. This little girl is my little pistol. She has been pulling herself up onto furniture for a few weeks now. But yesterday she started to try to stand by herself without holding onto the furniture. And today she was in her walker and dropped her care bear and said the famous "uh oh". Unreal how fast she has become mobile and is constantly changing and growing. She is EIGHT months yesterday!!!!!! Haley doesn't like to cuddle too much anymore. When you try to cuddle with her she tries to push away from you because she has places to be and things to do!
For those of you who are unaware; the CF Foundation has been making unbelievable strides in their research for drug or therapy that would make CF much more manageable or possibly cured. One VERY promising drug is in phase 2 of it's research. There are 3 total phases until it is released to patients. This particular drug is known as the VX-770. It is targeted toward the CF population that has G511D as one of their mutations. Only about 3-4% of all CF patients carry this specific mutation and Caleb is one of them. This drug has shown unbelievable and never seen before results up to this point. Even though it is only targeting a specific mutation (G511D) it is a gateway to several other mutations. Research has already started for other mutations. My prayers are of so much hope, so much praise, so much rejoice, and just amazement. I have been looking all over my articles about the research that is being done (because of course I am following every move this drug makes) and I know that in one of my articles I read a prominent person (researcher or CFF representative) state that we all knew the day we found a cure for CF there would be a big party, and the person in the article said "so we should maybe start looking at invitations". I wish I could reference this article-but it is late as usual and I cannot find it. I wish I could put down in words how a mother feels when she reads something like this. Or how a mother feels when she finds out that not only is this drug in research but that her son's CF doctor is on the front lines of this research. The research is not something taking place millions of miles away-but the clinical trials are being done right here at the Children's Hospital that we visit at least once every 90 days. All that I can say is the Lord is amazing. He makes the blind see and when you thought there was only one set of footprints it was because he was carrying you. I hope that makes sense to you-it makes perfect sense to me.
2 comments:
That's such good news! I'll be praying for a cure and for the new trials to work!!! God is good!
Laura
Thought I'd chime and let you know I was at your blog! The news about the new CF drug is SO wonderful. I can only imagine the overwhelming emotions you guys are feeling. I pray that things happen soon...
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