We headed to Oklahoma City today to see Lane's CF doctor.... Lane participated in his first pulmonary function testing, which consisted of blowing into a big machine and trying to shoot a rocket to the moon... He was a little nervous at first, suspecting that there had to be something they were hiding from him, like a poke.... He was relieved to discover it was totally painless, and he did very well. I discussed the gene testing we had done on Lane. You receive two genes, one from each parent. In a CF patient, both genes are mutated. We have to pay each time we test for a new mutation so it can be a long and expensive process. For Lane, one copy was confirmed to be Delta F508, (which our Dr stated was a severe gene mutation of CF ), and they did not determine which gene mutation the other copy was. Our Doctor wasn't concerned with the other gene at this time, since it would not alter his treatment at the point. Not sure how that all fits together right now, will just have to wait and see, although I would have preferred any other 
results than the ones I was given. Like how about no CF... I was not surprised. I have spent many hours online researching different symptoms of gene mutations, and based on some of Lane's symptoms, like the wrinkling in on his fingers and hands (known as Aquagenic wrinkling) I already braced myself for the possibility he had the Delta F508 mutation. His visit went well, except for his weight which we need to focus on... So he will get a lot of high calorie smoothies....yum.... So I think "what now?"..... I can not go down that dark hallway to the little room in the corner of my mind, that only offers thoughts of despair. I cannot look ahead or look back. I must stay in the present.... Today, right now, this moment, and 
today was a good day... It is often hard for me to be able write the words that my heart is harboring.... I often start to journal, and it often becomes to overwhelming for me to continue. I often feel as if I am blogging to myself, and use the forum to work through my own thoughts and issues... I am currently battling with my inner self... and well yes a little angry... I don't want to be a part of this club. Everything in our life is completely upside down, and although I have faith that God will walk beside me through all this change, I still don't want to be apart of this club... I do know however, that this is right where God has intended for me to be at this moment in my life... My mind has flashed before me all of the ginger bread crumbs left throughout my life that lead me too this point, and when I place them all together, I get chills up my spine... I truly believe God has a purpose for me, my family, and most of all Lane. It does not sooth my aching heart though. So I shall walk this path, shed my tears along the way, and continue to grow in my faith that my father will provide, and never leave me....
results than the ones I was given. Like how about no CF... I was not surprised. I have spent many hours online researching different symptoms of gene mutations, and based on some of Lane's symptoms, like the wrinkling in on his fingers and hands (known as Aquagenic wrinkling) I already braced myself for the possibility he had the Delta F508 mutation. His visit went well, except for his weight which we need to focus on... So he will get a lot of high calorie smoothies....yum.... So I think "what now?"..... I can not go down that dark hallway to the little room in the corner of my mind, that only offers thoughts of despair. I cannot look ahead or look back. I must stay in the present.... Today, right now, this moment, and 
today was a good day... It is often hard for me to be able write the words that my heart is harboring.... I often start to journal, and it often becomes to overwhelming for me to continue. I often feel as if I am blogging to myself, and use the forum to work through my own thoughts and issues... I am currently battling with my inner self... and well yes a little angry... I don't want to be a part of this club. Everything in our life is completely upside down, and although I have faith that God will walk beside me through all this change, I still don't want to be apart of this club... I do know however, that this is right where God has intended for me to be at this moment in my life... My mind has flashed before me all of the ginger bread crumbs left throughout my life that lead me too this point, and when I place them all together, I get chills up my spine... I truly believe God has a purpose for me, my family, and most of all Lane. It does not sooth my aching heart though. So I shall walk this path, shed my tears along the way, and continue to grow in my faith that my father will provide, and never leave me.... 
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Sorry you didn't get the best news of the mutation. But seriously, the DeltaF508 does NOT necessarily have to be the most severe. It is the most common. But just because he has one of these mutations, doesn't mean his CF will be extremely severe. It varies between every CF person. And it will also depend on his other mutation. I know personally CFers who have different mutations other than the Delta F508 that have had a much more severe case of CF (including me). You just never know...so don't panic now! Don't assume that his CF is going to be really severe or get worse. Just do what you can to keep him healthy..and pray!
ReplyDeleteWow, it's like you took the words out of my mouth! I feel the same exact way! Sometimes it's like I'm writing to myself, but it just needs said!
ReplyDeleteI'm with Katey, no worries. I've learned to try not to think about my son's CF, but to live in the moment and help him have a fun life! I have a frame on my wall that says "Life is not measured by the number of breaths we take, but by the number of moments that take our breath away." I try to live by this for Lil' Chris' sake:)
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