Dear Aven,
I awoke this morning excited about typing you a short message and was stricken by sadness as I learned of a horrific incident which occurred in Colorado today. If you take the time to look up Colorado movie shooting July 20, 2012, I am sure you will be able to find the details.
I gave your sisters and you the biggest, most sincerest hug, as I know many parents across the country will do tonight. Those parents who have taken for granted their children were reminded today that life is so very precious and we do not know when or where we may take our last breath.
As I looked at you, I could only think about how you did not choose to come into this world, nor did you choose your diagnosis. I thought about the battles that you will face in your future as you will fight for just one more breath on a daily basis and how someone by an act of violence could so easily take it from you.
They do not have a motive at this time as to why this young man in Colorado did what he did, but I feel as a high school teacher, that there is so much that we are not doing in preparing our young adults to handle frustration, depression, stress and anger.
I am reminded of the meaning of your name. Aven, means courageous and brave. Yes you are. Yes you will be. My thoughts are with all the families and friends who suffered today.
Much Love Today, Tomorrow, and Always,
Your Mother Autumn
Friday, July 20, 2012
Thursday, July 19, 2012
A Little Piece of Aven
Dear Aven-
I have found myself as of late wanting to sit down and write to you through the blog; however, the moment I start to sit, I think to myself that it would be time better spent holding you and watching you smile. So I go to you and I grab you and look into your blue eyes. You look so innocent and sweet. You just came off from having a cold and you did quite well. I had called the doctor to ask about what we needed to do. I knew from here on out your colds would be anything but common. We would have to handle them a little bit different than the ones that your sisters have. Your CMH physicians (Children's Mercy Hospital) had told us that if you developed a cough then that is when we needed to get you to Kansas City and your pediatrician stated that we should not give you any cold meds because the medicine has a tendency to thicken up mucous even more so for CF patients. So we just held you, used the Vick's rub like crazy and suctioned your little nose constantly to see you through. It was hard for me to watch you sleep at night. You would lay there with a smile on your face while your little chest looked as if it were racing to provide you with every little breath it could. Your father and I even noticed a discoloration in your skin as you slept through your cold and the slight blueness in your cheeks worried us about the lack of oxygen you were receiving.
Several people were glad to hear that your cold had passed. I have been very thankful for all the thoughts and prayers that are being giving to you, but what so many do not understand is that just because the sniffles are gone, the damage has been done. Every cold is a catalyst and it disturbs me that I can not see the damage other than through an X-ray machine. Even if I could see it with the naked eye, there would be nothing I could do.
Your sisters, Arya and Tara, love you so much. I get tickled at Tara who will turn 4 in October, because she truly believes in her mind that when you cry, you are crying out for her and that she is the only one that can take care of you. Both your sisters had their genetic tests and we did receive the results on July 10, 2012. Arya and Tara are both carriers of CF. They DO NOT have CF so they will never experience the symptoms and treatments that you will have to endure. Their genetic profile shows that they each have one mutation of deltaF508, which means they are a carriers. Two mutations, such in your case, would have indicated that they had cystic fibrosis. This is very important information for your sisters because as they get older and if they find out that their spouses also are carriers of CF, then there will be a chance of them having children with the diagnosis. Their chances were as follows: 25 % of not being a carrier and having no mutations, 25% of having CF, and 50% of being carriers. 1 in 25 Caucasians are carriers of CF and many do not even know it. Your father and I did not know that each one of us carried the mutation that would lead you down this path.
Much Love Today, Tomorrow and Always,
Mommy Autumn
I have found myself as of late wanting to sit down and write to you through the blog; however, the moment I start to sit, I think to myself that it would be time better spent holding you and watching you smile. So I go to you and I grab you and look into your blue eyes. You look so innocent and sweet. You just came off from having a cold and you did quite well. I had called the doctor to ask about what we needed to do. I knew from here on out your colds would be anything but common. We would have to handle them a little bit different than the ones that your sisters have. Your CMH physicians (Children's Mercy Hospital) had told us that if you developed a cough then that is when we needed to get you to Kansas City and your pediatrician stated that we should not give you any cold meds because the medicine has a tendency to thicken up mucous even more so for CF patients. So we just held you, used the Vick's rub like crazy and suctioned your little nose constantly to see you through. It was hard for me to watch you sleep at night. You would lay there with a smile on your face while your little chest looked as if it were racing to provide you with every little breath it could. Your father and I even noticed a discoloration in your skin as you slept through your cold and the slight blueness in your cheeks worried us about the lack of oxygen you were receiving.
Several people were glad to hear that your cold had passed. I have been very thankful for all the thoughts and prayers that are being giving to you, but what so many do not understand is that just because the sniffles are gone, the damage has been done. Every cold is a catalyst and it disturbs me that I can not see the damage other than through an X-ray machine. Even if I could see it with the naked eye, there would be nothing I could do.
Your sisters, Arya and Tara, love you so much. I get tickled at Tara who will turn 4 in October, because she truly believes in her mind that when you cry, you are crying out for her and that she is the only one that can take care of you. Both your sisters had their genetic tests and we did receive the results on July 10, 2012. Arya and Tara are both carriers of CF. They DO NOT have CF so they will never experience the symptoms and treatments that you will have to endure. Their genetic profile shows that they each have one mutation of deltaF508, which means they are a carriers. Two mutations, such in your case, would have indicated that they had cystic fibrosis. This is very important information for your sisters because as they get older and if they find out that their spouses also are carriers of CF, then there will be a chance of them having children with the diagnosis. Their chances were as follows: 25 % of not being a carrier and having no mutations, 25% of having CF, and 50% of being carriers. 1 in 25 Caucasians are carriers of CF and many do not even know it. Your father and I did not know that each one of us carried the mutation that would lead you down this path.
Much Love Today, Tomorrow and Always,
 |
| Sleeping during your first cold! We had a rough night prior! |
 |
| Big Sister Tara taking care of you! |
Sunday, July 8, 2012
A Little Piece of Aven
Dear Aven-
After your official diagnosis, it was hard. I think the Internet was actually more of a hindrance than a resource, or at least in that first week. I wanted to look up the the worse case scenarios. I wanted to prepare myself for what our journey may look like. Your daddy seemed more at ease. Not that he didn't care, but had more faith in the advancements that were always being made in the medical field. I think he also knew that we, together, were the best parents for you.
When we traveled to Children's Mercy after your diagnosis they were very surprised that you had gained weight. Most babies with your mutations, struggle with weight gain and have to start the enzymes immediately. Many infants even have surgery within the first 72 hours of birth simply due to the pancreas and bowel already being blocked with thick mucous. They had done a little bit of testing to determine that even though you were gaining weight, you were severely pancreatic insufficient and that since our plan from the 'get go' was to stay pro-active then we needed to start you on the enzymes.
We were instructed to take a small amount of applesauce and open a capsule and mix the enzymes with the sauce. I remember thinking that this was going against so much that I knew as a mother. I never even introduced solids to your sisters until about 6 months of age, and here you were still a tiny little thing, not even 4 weeks old, eating from a spoon.
I could see a big change within 24 hours. The enzymes were actually helping. Prior to the prescription we were changing your diaper as many as 20 times a day and we knew the enzymes were doing their job; they were allowing you to absorb the nutrients you needed from your food. You see, that is usually the first stages of CF as an infant. You have difficulty absorbing the nutrients that you need form the fats in your diet. Many individuals with CF have faulty or malfunctioning protein channels. Your protein channels were just fine; however, the number of channels you had were insufficient. Your channels were not allowing the chloride ions to escape from their cells. This chloride ( which easily comes from table salt - NaCl and is naturally in our bodies) is needed to attract the polar water molecule to allow for hydration to occur. The process of hydration is what is needed to thin the mucous in our bodies. Most individuals can easily sneeze and cough to break up the loose mucous when an infection sets in, but CF patients develop a thickening of their mucous which first tends to block the pancreas and interrupt digestion and then slowly works its way into to the lungs where it settles. While others can easily remove the mucous by blowing their noses, we will have to go through a series of "treatments" to help thin and loosen the mucous so it does not serve as a petri-dish for any foreign bacteria that finds its way into your system.
When others had heard of your diagnosis, I had several individuals ask me if you tasted salty. It took me awhile to test and see, but I would lick my lips, give you a big kiss on your forehead and then I could taste for myself......you tasted like a little salt lick. You see, since your cells were not releasing the chloride ions inside of your body, they were leaving with the cells through your pores. That is why everyday for the rest of your life you will have to have salt added to your diet. Right now as a 3 week old, we are adding table salt to your bottles.
I feel that I am starting to get this blog caught up to date. There is some information that I have not included, but as I reflect in future blogs, I believe the details will make themselves known. There is one more thing I need to add. We had traveled to Children's Mercy again on June 25, 2012 for two reasons. 1) was so you could have the sweat chloride test and 2) both your sisters Arya and Tara were to be tested to see if they possibly had CF or if they were carriers like your father and I. Even though we knew you had CF through genetic testing and had already started treatment, the sweat chloride test would inform us as to the rate at which your body was losing your chloride ions. I received a phone call on July 2 stating that your numbers were 90 and 120. As I did further investigation I found out that for your age these numbers were astounding. Under 30 millimoles/L = not likely CF, 30- 60 millimoles/L = borderline CF, and 60-80 millimoles/L = CF. When I asked the doctor what it meant, she had stated that as you got older and participated in sports we would have to really increase the amount electrolytes you consume. Dr. Bear also mentioned that you would be most likely adding salt to the standard glass of water that you would be drinking. As for the results of your sisters' blood tests, we are still waiting. It has been 13 days and I expect we will here something tomorrow.
Much Love Today, Tomorrow and Always,
Your Mother Autumn
After your official diagnosis, it was hard. I think the Internet was actually more of a hindrance than a resource, or at least in that first week. I wanted to look up the the worse case scenarios. I wanted to prepare myself for what our journey may look like. Your daddy seemed more at ease. Not that he didn't care, but had more faith in the advancements that were always being made in the medical field. I think he also knew that we, together, were the best parents for you.
When we traveled to Children's Mercy after your diagnosis they were very surprised that you had gained weight. Most babies with your mutations, struggle with weight gain and have to start the enzymes immediately. Many infants even have surgery within the first 72 hours of birth simply due to the pancreas and bowel already being blocked with thick mucous. They had done a little bit of testing to determine that even though you were gaining weight, you were severely pancreatic insufficient and that since our plan from the 'get go' was to stay pro-active then we needed to start you on the enzymes.
We were instructed to take a small amount of applesauce and open a capsule and mix the enzymes with the sauce. I remember thinking that this was going against so much that I knew as a mother. I never even introduced solids to your sisters until about 6 months of age, and here you were still a tiny little thing, not even 4 weeks old, eating from a spoon.
I could see a big change within 24 hours. The enzymes were actually helping. Prior to the prescription we were changing your diaper as many as 20 times a day and we knew the enzymes were doing their job; they were allowing you to absorb the nutrients you needed from your food. You see, that is usually the first stages of CF as an infant. You have difficulty absorbing the nutrients that you need form the fats in your diet. Many individuals with CF have faulty or malfunctioning protein channels. Your protein channels were just fine; however, the number of channels you had were insufficient. Your channels were not allowing the chloride ions to escape from their cells. This chloride ( which easily comes from table salt - NaCl and is naturally in our bodies) is needed to attract the polar water molecule to allow for hydration to occur. The process of hydration is what is needed to thin the mucous in our bodies. Most individuals can easily sneeze and cough to break up the loose mucous when an infection sets in, but CF patients develop a thickening of their mucous which first tends to block the pancreas and interrupt digestion and then slowly works its way into to the lungs where it settles. While others can easily remove the mucous by blowing their noses, we will have to go through a series of "treatments" to help thin and loosen the mucous so it does not serve as a petri-dish for any foreign bacteria that finds its way into your system.
When others had heard of your diagnosis, I had several individuals ask me if you tasted salty. It took me awhile to test and see, but I would lick my lips, give you a big kiss on your forehead and then I could taste for myself......you tasted like a little salt lick. You see, since your cells were not releasing the chloride ions inside of your body, they were leaving with the cells through your pores. That is why everyday for the rest of your life you will have to have salt added to your diet. Right now as a 3 week old, we are adding table salt to your bottles.
I feel that I am starting to get this blog caught up to date. There is some information that I have not included, but as I reflect in future blogs, I believe the details will make themselves known. There is one more thing I need to add. We had traveled to Children's Mercy again on June 25, 2012 for two reasons. 1) was so you could have the sweat chloride test and 2) both your sisters Arya and Tara were to be tested to see if they possibly had CF or if they were carriers like your father and I. Even though we knew you had CF through genetic testing and had already started treatment, the sweat chloride test would inform us as to the rate at which your body was losing your chloride ions. I received a phone call on July 2 stating that your numbers were 90 and 120. As I did further investigation I found out that for your age these numbers were astounding. Under 30 millimoles/L = not likely CF, 30- 60 millimoles/L = borderline CF, and 60-80 millimoles/L = CF. When I asked the doctor what it meant, she had stated that as you got older and participated in sports we would have to really increase the amount electrolytes you consume. Dr. Bear also mentioned that you would be most likely adding salt to the standard glass of water that you would be drinking. As for the results of your sisters' blood tests, we are still waiting. It has been 13 days and I expect we will here something tomorrow.
Much Love Today, Tomorrow and Always,
 |
| Gettig the elctrodes placed on your arms for the sweat chloride test. |
 |
| Arya and Tara after they had their blood taken for their genetic tests. |
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