Friday, December 12, 2008
Pictures of Gianna
I only have a couple of minutes but here are some new pictures of Gianna. She is doing great, last night she slept almost 8 hours and then another 3 after that. I know I am spoiled with this amazing angel baby. We have lot's of fun together and she is crazy about her daddy. She is smiling and cooing so much. I have yet to get a really good smiling picture but I am working on it. She holds her head up all really well and loves to just look around. Her favorite thing right now is to look into the mirror with daddy and giggle. Sorry I barely ever post but I am trying to keep up on all your blogs. Lot's of love:)
Friday, December 5, 2008
Cayden Update
Hi Friends,
Thank you all so very much for your prayers and encouraging notes. Below is a copy of an email my sister sent out regarding their appointment with the pulmonary specialist:
Hi Friends,
Thank you for the many sweet e-mails and phone calls concerning Cayden. We feel very fortunate to have supportive friends who are praying for us.
Here's the scoop. We are actually doing fairly well right now. The shocking news has sort of set in and we are becoming educated on what life is going to be like for our little guy. Fortunately, the prognosis looks promising. If it wasn't for the newborn screening that was implemented in California in July 2007, we probably would not have known about the disease until later in his life. Prior to that time, a diagnosis of cystic fibrosis in a baby was usually due to "failure to thrive". In Cayden's case, he is thriving. His pancreas is working normally, producing the necessary enzymes for nutritional absorption, and he is gaining weight. The doctors will be taking a stool sample at 6 and 9 months to make sure this continues to be true. He is in the 97th percentile for both weight and head size and the 90th percentile for height. I told him he has a little catching up to do on his length:). Dr. Pian, the lead pulmonologist at Children's Hospital and department head of the CF clinic, said that he would be very surprised if Cayden suddenly had pancreatic insufficiency. He has followed multiple children with the same two mutations of CF that Cayden has, so he has a pretty good idea of what the outlook will be. That was relieving to us.
Some people wonder why we want to know know about a disease that may not affect Cayden for years. Dr. Pian shared that in cases like Cayden's if there is not an early diagnosis, parents continue to wonder why it takes so long for their child to recover from colds and infections. Then after numerous bouts with sinusitis and other bronchial infections, allergy testing, etc., a doctor might consider the possibility of CF. Once the child or teenager is finally diagnosed, he/she most likely already has lung damage. Early diagnosis will help us make decisions for Cayden that will avoid damage to his lungs.
Dr. Pian said he expects Cayden to live a pretty normal life, and with today's technologies and resources he should live well into adulthood. Of course, Flack and I are praying that a cure is discovered in his lifetime. Either way, continued discoveries will be made about CF as Cayden grows and therefore we foresee an even longer life span than predicted now. There is a lot of research going on in the field. Here are some other things we found out at our last appointment:
· We asked if Cayden will be able to play sports and the doctor said absolutely. He will just have to be on a regular hydration schedule because his body excretes more salt than ours.
· The team kept emphasizing that people who are around Cayden need to wash hands, wash hands, and wash hands again because although his immune system is not necessarily weaker than the average person's, bacteria collects more readily in the dryer, thicker mucous that is present in CF patients. Therefore, respiratory illnesses can be tougher on Cayden. In fact, the doctors may prescribe more aggressive antibiotic treatments when he does get sick and we are supposed to notify Children's Hospital when he contracts any sicknesses. Cayden will have to get a shot once a month to help him avoid a respiratory virus that is pretty common. The doctor told us it costs $900 a shot. Thank God for insurance!
· Dr. Pian told us that San Diego has a good environment for CF patients, but not to be surprised if Cayden is hospitalized a few times during his lifetime. For example, when the fires happened in SD, there were many CF patients hospitalized. (Flack said we will be evacuating if that happens. Who wants some house guests?:) Also, Cayden will go down to Children's Hospital once every 3 months for a swab test on his throat to see if any threatening bacteria are in his system.
That's all I can think of right now. Usually new CF patients have to go back to the clinic once a week for the first month, but because Cayden's health is excellent right now, we don't have to go back until next month.
Of course we are saddened that our little boy has to endure this disease. Like all parents, we want the absolute best for our Cayden and it will pain us to see him struggle. Nevertheless, we are encouraged at the outlook. It doesn't seem that he will live as a sickly child which makes our hearts lighter. As some of you may know, his name means "companion", but it also means "fighter" - appropriate I guess.
Thanks again for all your support and prayers!
With love,
Sara
Thank you all so very much for your prayers and encouraging notes. Below is a copy of an email my sister sent out regarding their appointment with the pulmonary specialist:
Hi Friends,
Thank you for the many sweet e-mails and phone calls concerning Cayden. We feel very fortunate to have supportive friends who are praying for us.
Here's the scoop. We are actually doing fairly well right now. The shocking news has sort of set in and we are becoming educated on what life is going to be like for our little guy. Fortunately, the prognosis looks promising. If it wasn't for the newborn screening that was implemented in California in July 2007, we probably would not have known about the disease until later in his life. Prior to that time, a diagnosis of cystic fibrosis in a baby was usually due to "failure to thrive". In Cayden's case, he is thriving. His pancreas is working normally, producing the necessary enzymes for nutritional absorption, and he is gaining weight. The doctors will be taking a stool sample at 6 and 9 months to make sure this continues to be true. He is in the 97th percentile for both weight and head size and the 90th percentile for height. I told him he has a little catching up to do on his length:). Dr. Pian, the lead pulmonologist at Children's Hospital and department head of the CF clinic, said that he would be very surprised if Cayden suddenly had pancreatic insufficiency. He has followed multiple children with the same two mutations of CF that Cayden has, so he has a pretty good idea of what the outlook will be. That was relieving to us.
Some people wonder why we want to know know about a disease that may not affect Cayden for years. Dr. Pian shared that in cases like Cayden's if there is not an early diagnosis, parents continue to wonder why it takes so long for their child to recover from colds and infections. Then after numerous bouts with sinusitis and other bronchial infections, allergy testing, etc., a doctor might consider the possibility of CF. Once the child or teenager is finally diagnosed, he/she most likely already has lung damage. Early diagnosis will help us make decisions for Cayden that will avoid damage to his lungs.
Dr. Pian said he expects Cayden to live a pretty normal life, and with today's technologies and resources he should live well into adulthood. Of course, Flack and I are praying that a cure is discovered in his lifetime. Either way, continued discoveries will be made about CF as Cayden grows and therefore we foresee an even longer life span than predicted now. There is a lot of research going on in the field. Here are some other things we found out at our last appointment:
· We asked if Cayden will be able to play sports and the doctor said absolutely. He will just have to be on a regular hydration schedule because his body excretes more salt than ours.
· The team kept emphasizing that people who are around Cayden need to wash hands, wash hands, and wash hands again because although his immune system is not necessarily weaker than the average person's, bacteria collects more readily in the dryer, thicker mucous that is present in CF patients. Therefore, respiratory illnesses can be tougher on Cayden. In fact, the doctors may prescribe more aggressive antibiotic treatments when he does get sick and we are supposed to notify Children's Hospital when he contracts any sicknesses. Cayden will have to get a shot once a month to help him avoid a respiratory virus that is pretty common. The doctor told us it costs $900 a shot. Thank God for insurance!
· Dr. Pian told us that San Diego has a good environment for CF patients, but not to be surprised if Cayden is hospitalized a few times during his lifetime. For example, when the fires happened in SD, there were many CF patients hospitalized. (Flack said we will be evacuating if that happens. Who wants some house guests?:) Also, Cayden will go down to Children's Hospital once every 3 months for a swab test on his throat to see if any threatening bacteria are in his system.
That's all I can think of right now. Usually new CF patients have to go back to the clinic once a week for the first month, but because Cayden's health is excellent right now, we don't have to go back until next month.
Of course we are saddened that our little boy has to endure this disease. Like all parents, we want the absolute best for our Cayden and it will pain us to see him struggle. Nevertheless, we are encouraged at the outlook. It doesn't seem that he will live as a sickly child which makes our hearts lighter. As some of you may know, his name means "companion", but it also means "fighter" - appropriate I guess.
Thanks again for all your support and prayers!
With love,
Sara
Tuesday, December 2, 2008
CAYDEN - means Fighter and Companion
Yes, it has been a long time since I last blogged but for good reason. Life has just been busy and overwhelming. The easiest way for me to write this is just to paste in the email that I sent to some friends on November 26th.
It is with a heavy heart that we write to tell you that our little Cayden (my sister Sara's 6 week old newborn) has Cystic Fibrosis. The Maguire’s received a call last evening from the head of the Cystic Fibrosis Department of Children’s Hospital informing them that his test numbers are clear indicators. The good news is that he has a mild form and he is gaining weight (this means that his body is processing food adequately – many children with CF have trouble gaining weight). The next step is to have more testing done and meet with the team of doctors who will care for him. By the way, the doctor who broke the news to them was very caring, professional and compassionate with Flack and Sara. We trust our Gracious, Mighty God to lead the Maguire’s down this difficult path. “His rod and his staff they comfort me.”
It is with a heavy heart that we write to tell you that our little Cayden (my sister Sara's 6 week old newborn) has Cystic Fibrosis. The Maguire’s received a call last evening from the head of the Cystic Fibrosis Department of Children’s Hospital informing them that his test numbers are clear indicators. The good news is that he has a mild form and he is gaining weight (this means that his body is processing food adequately – many children with CF have trouble gaining weight). The next step is to have more testing done and meet with the team of doctors who will care for him. By the way, the doctor who broke the news to them was very caring, professional and compassionate with Flack and Sara. We trust our Gracious, Mighty God to lead the Maguire’s down this difficult path. “His rod and his staff they comfort me.”
Today they go and meet with the doctor to see what life looks like for Cayden. This is such a sad and scary time for us. Please pray for the Maguires!
In regards to my little Gianna she is doing great! She is sleeping 6 to 7.5 hours at night and then an additional 3 after that. She is so easy and healthy. I will post pics when I have time.
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