Tuesday, June 15, 2010
Update on Lilly
I wanted to do a quick update on Lilly. Unfortunately, she has an infection. She cultured staph, so Dr. Anstead has put her on an antibiotic. You would never even know she is sick - ugh. I thought she wouldn't be so quick to get sick in the summer, but I guess I was wrong. It is never ending it seems...
Friday, June 11, 2010
Olivia's Well Child Appointment
I feel like poor Olivia is often left out of the news because so much is going on with Lilly, so I wanted to do a separate post to give an update on her. She also saw Dr. Taylor this week for her 3 year old well child checkup and she looks perfect. Olivia weighs 29 pounds and is a little over 36 inches tall (just tall enough to ride the rides at the fair!). She is exactly the 25th percentile in height and weight - a petite little girl. Developmentally, she is wonderful. She told Dr. Taylor her name, the names of Mommy and Daddy, and the names of her dogs. She informed Dr. Taylor that she was 3 years old and was able to list every color, including green, which is her favorite color! She showed Dr. Taylor how she could run and jump, and even sang us a few songs! Her toilet training is on target (Dr. Taylor informed us that she could wet the bed until 6 before it is an issue - whew!) and that dropping her nap is normal for this age. Dr. Taylor emphasized to me the importance of getting her in social activities - so I am on the lookout for good activities for a 3 year old if anyone has any suggestions. I am paying for a yearly membership at the Children's museum and looking into Gymboree, but I am open to any ideas.
Overall, it was a good visit, and Olivia really enjoyed it, particularly since she did not have to get a "pinch!" She was even happier when she received her Dora sticker, which I think in her mind is the only reason she goes to the doctor!
Overall, it was a good visit, and Olivia really enjoyed it, particularly since she did not have to get a "pinch!" She was even happier when she received her Dora sticker, which I think in her mind is the only reason she goes to the doctor!
A Swift Kick In The Gut
This week was a difficult week. We returned to see Dr. Kanga and didn't walk out with the news that we expected. Our adjustment to Lilly's situation had been improving. For the first time, I actually slept the few nights before her appointment. I didn't bite Jeremy's head off. Nor did I take out my anxiety on Olivia. Rather, we both felt pretty confident that Lilly was doing well and we would have a good appointment. We have noticed that she is really filling out. Her BMs are looking good and we finally feel like we are on the correct amount of enzymes (even though her enzymes were not approved by the FDA - don't even get me started). She actually has cankles and fat around her wrists - hooray! Moreover, she finally graduated from the 0-3 month clothes to 3-6 month clothes, right around her 6 month/half birthday. We were ecstatic! While her reflux isn't really better, I was okay in dealing with merely a "laundry problem" and enjoying an appointment that was supposed to be a little less stressful.
When we arrived at Dr. Kanga's office, I actually wasn't eat up with worry. I thought that we were finally getting a handle on her diagnosis. Lilly measured 25 inches long and 12 lbs. 11 oz. Score! That puts her at about the 3rd-4th percentile in weight and 25th percentile in height (for those interested, her head circumference is about 40th percentile - bobble head!). I was very excited. In talking to Diane, she was pleased with her food intake and weight gain and both she and Dr. Kanga agreed that Lilly looked good. They prescribed us Creon because, as I mentioned before, Ultrase still hasn't been approved by the FDA. We have another 30 day supply of Ultrase and then we have to switch to Creon, which causes me some worry, but in talking to others Creon is fairly popular and effective, so this issue seemed like a minor problem. Then they sent us to the lab and x-ray to have her first labs drawn and her first chest x-ray - fairly typical, as it is done once a year. I wasn't too terribly worried because to date, Lilly didn't seem to be having any respiratory problems.
Then the results of the chest x-ray came in and it all came crashing down. Now, let me preface this by saying that in the whole scheme of things, this probably isn't that big of deal with you look at it through the CF lens. But for us, this was a VERY big deal and VERY big kick in the gut. Her x-ray showed some lung disease, which was explained to us at length by Dr. Kanga and Dr. Anstead (the adult CF doctor, who we also met at this visit). In short, Lilly's x-ray showed "slightly increased markings" which they said could represent a viral respiratory infection (which is also suggested by her white blood cell count) or mucus from CF. The problem is that the chest x-ray is just not sensitive enough to tell us exactly. What this means to us that there are definitely some changes going on. While Dr. Kanga has assured me that there is no evidence on the chest x-ray that these changes are chronic or permanent, he and Dr. Anstead agreed that we needed to immediately start her on breathing medications.
This is particularly true since I reported a new cough. To be honest, I didn't think her cough was that big of a deal. I am very sensitive to these things now and a couple of weeks ago noticed that she was coughing a little more. It is a dry cough and very random. I asked Ashley to watch for it and she agreed that Lilly had started coughing. If I hadn't read in my CF treatise that all coughs should be reported, I probably never would have said anything and chalked it up to allergies. But once I reported the cough, and we saw the result of the chest x-ray, it was determined that something had to be done.
The current trend in CF care is to remain proactive, so Dr. Kanga and Dr. Anstead prescribed Lilly Pulmozyne, which has been available for 15 years and become a mainstay for CF lung treatment, even in asymptomatic patients. She is administered the Pulmozyne, which will thin the mucous in her lungs, once a day through a nebulizer treatment that takes approximately 10 minutes. Moreover, they have also prescribed her Albuterol to be administered through an inhaler twice a day prior to her chest percussion therapy.
The first blow was the fact that Lilly, who seems so healthy from a pulmonary standpoint, had anything show up on her chest x-ray. I did not expect that so soon. I really thought that her breathing problems would manifest later down the road and frankly, I wasn't prepared to deal with it so soon. The fact that she even has anything show up at 6 months old, particularly where she seems so healthy, seems so ominous to me. It seems to me that in talking to other CF moms that the earlier the breathing problems start, the harder the road is for their children and that terrifies me. I had hoped (perhaps ignorantly) that wouldn't apply to us. I am not sure that is the case.
I know this sounds petty, but I hate the thought of adding even more treatment and particularly of using a nebulizer. I have used a nebulizer before on Olivia when she was a baby and it was very stressful to us, primarily because she cried the entire treatment. The thought of doing yet another treatment where I have to fight with Lilly and listen to her wail just absolutely kills me. It is so hard to watch your child endure such treatments, even if you know logically that they do not hurt her. But watching her wail through a chest x-ray, through the drawing of blood, through chest therapy, and now possibly through nebulizer treatments - well, it is emotionally exhausting. It physically hurts. But we will do what we have to do.
Jeremy and I have been so dejected since we received this news. Sometimes this disease seems more than we can handle. As I said before, I know this isn't the worst that we will have to face. Moreover, I also know that people continue to tell us that it will soon be like second nature. But right now we feel like our whole lives are consumed with CF. It has seeped into every facet of our lives and we are so overwhelmed by all of it. Sometimes it feels like we are drowning and we are trying so hard to not let the stress of it all get to us, but sometimes that is so difficult. I try to stay positive, but in situations such as the most recent set-back, it is just too hard.
On a more positive note, we also saw Lilly's pediatrician this week. She too was pleased with Lilly's weight gain and had some suggestions that coincided with those of Dr. Kanga and Anstead about her reflux. We are now mixing rice cereal with Lilly's formula to see if that helps. We are also considering Reglan as another possible treatment. She remains on the Prevacid because at the very least it is helping with her malabsorption issues. Moreover, Dr. Taylor said that Lilly is progressing beautifully as far as development goes. She is grasping at toys, putting her hands together, cooing, and all the things that you would expect from any 6 month old baby. No teeth yet, but they may be coming soon. So if there is a bright side, that is it.
When we arrived at Dr. Kanga's office, I actually wasn't eat up with worry. I thought that we were finally getting a handle on her diagnosis. Lilly measured 25 inches long and 12 lbs. 11 oz. Score! That puts her at about the 3rd-4th percentile in weight and 25th percentile in height (for those interested, her head circumference is about 40th percentile - bobble head!). I was very excited. In talking to Diane, she was pleased with her food intake and weight gain and both she and Dr. Kanga agreed that Lilly looked good. They prescribed us Creon because, as I mentioned before, Ultrase still hasn't been approved by the FDA. We have another 30 day supply of Ultrase and then we have to switch to Creon, which causes me some worry, but in talking to others Creon is fairly popular and effective, so this issue seemed like a minor problem. Then they sent us to the lab and x-ray to have her first labs drawn and her first chest x-ray - fairly typical, as it is done once a year. I wasn't too terribly worried because to date, Lilly didn't seem to be having any respiratory problems.
Then the results of the chest x-ray came in and it all came crashing down. Now, let me preface this by saying that in the whole scheme of things, this probably isn't that big of deal with you look at it through the CF lens. But for us, this was a VERY big deal and VERY big kick in the gut. Her x-ray showed some lung disease, which was explained to us at length by Dr. Kanga and Dr. Anstead (the adult CF doctor, who we also met at this visit). In short, Lilly's x-ray showed "slightly increased markings" which they said could represent a viral respiratory infection (which is also suggested by her white blood cell count) or mucus from CF. The problem is that the chest x-ray is just not sensitive enough to tell us exactly. What this means to us that there are definitely some changes going on. While Dr. Kanga has assured me that there is no evidence on the chest x-ray that these changes are chronic or permanent, he and Dr. Anstead agreed that we needed to immediately start her on breathing medications.
This is particularly true since I reported a new cough. To be honest, I didn't think her cough was that big of a deal. I am very sensitive to these things now and a couple of weeks ago noticed that she was coughing a little more. It is a dry cough and very random. I asked Ashley to watch for it and she agreed that Lilly had started coughing. If I hadn't read in my CF treatise that all coughs should be reported, I probably never would have said anything and chalked it up to allergies. But once I reported the cough, and we saw the result of the chest x-ray, it was determined that something had to be done.
The current trend in CF care is to remain proactive, so Dr. Kanga and Dr. Anstead prescribed Lilly Pulmozyne, which has been available for 15 years and become a mainstay for CF lung treatment, even in asymptomatic patients. She is administered the Pulmozyne, which will thin the mucous in her lungs, once a day through a nebulizer treatment that takes approximately 10 minutes. Moreover, they have also prescribed her Albuterol to be administered through an inhaler twice a day prior to her chest percussion therapy.
The first blow was the fact that Lilly, who seems so healthy from a pulmonary standpoint, had anything show up on her chest x-ray. I did not expect that so soon. I really thought that her breathing problems would manifest later down the road and frankly, I wasn't prepared to deal with it so soon. The fact that she even has anything show up at 6 months old, particularly where she seems so healthy, seems so ominous to me. It seems to me that in talking to other CF moms that the earlier the breathing problems start, the harder the road is for their children and that terrifies me. I had hoped (perhaps ignorantly) that wouldn't apply to us. I am not sure that is the case.
I know this sounds petty, but I hate the thought of adding even more treatment and particularly of using a nebulizer. I have used a nebulizer before on Olivia when she was a baby and it was very stressful to us, primarily because she cried the entire treatment. The thought of doing yet another treatment where I have to fight with Lilly and listen to her wail just absolutely kills me. It is so hard to watch your child endure such treatments, even if you know logically that they do not hurt her. But watching her wail through a chest x-ray, through the drawing of blood, through chest therapy, and now possibly through nebulizer treatments - well, it is emotionally exhausting. It physically hurts. But we will do what we have to do.
Jeremy and I have been so dejected since we received this news. Sometimes this disease seems more than we can handle. As I said before, I know this isn't the worst that we will have to face. Moreover, I also know that people continue to tell us that it will soon be like second nature. But right now we feel like our whole lives are consumed with CF. It has seeped into every facet of our lives and we are so overwhelmed by all of it. Sometimes it feels like we are drowning and we are trying so hard to not let the stress of it all get to us, but sometimes that is so difficult. I try to stay positive, but in situations such as the most recent set-back, it is just too hard.
On a more positive note, we also saw Lilly's pediatrician this week. She too was pleased with Lilly's weight gain and had some suggestions that coincided with those of Dr. Kanga and Anstead about her reflux. We are now mixing rice cereal with Lilly's formula to see if that helps. We are also considering Reglan as another possible treatment. She remains on the Prevacid because at the very least it is helping with her malabsorption issues. Moreover, Dr. Taylor said that Lilly is progressing beautifully as far as development goes. She is grasping at toys, putting her hands together, cooing, and all the things that you would expect from any 6 month old baby. No teeth yet, but they may be coming soon. So if there is a bright side, that is it.
Monday, June 07, 2010
Another One Bites the Dust...
First there was Nemo...
then Mr. Seahorse.
Just call us the fish killers.
Sunday, June 06, 2010
St. Elizabeth Ann Seton Country Fair 2010
We took Olivia and Lilly to the St. Elizabeth Ann Seton Country Fair this weekend and Olivia absolutely LOVED it. She had so much fun riding the merry-go-round and any other ride that we would let her - the girl has NO fear. Of course, a trip to the fair would not be complete without a few fair prizes. We came home with one stuffed fish and one live fish. We won Nemo, our live goldfish, in the quintessential fair game - throw the ping pong ball into the fish bowl. I let Olivia play knowing she didn't have the hand-eye coordination to win. She surprised me - she lobbed those balls very close to the fish bowls. I still felt pretty confident after she threw her last ball and no hit, until the carnival lady running the game handed her a fish. I looked up in shock and the lady told me that someone won, but didn't want the fish. It was probably some parent laughing all the way to the parking lot. Ugh. As I told my mom, at least it wasn't a rabbit, like I used to win at the fair when I was little. Unfortunately, Nemo had a tough transition home. He came to us in water colored with food coloring (I think). When we transferred him to the fish bowl that we bought (yes, Jeremy went to Meijer at 11:00 on Saturday night to get supplies), he didn't make it through the night. After comforting a hysterical 3 year old in the morning, I promised her we would get another fish. A fish funeral around the toilet bowel and a trip to Petsmart later, we came home with Mr. Seahorse, our new Betta fish. Unfortunately, he hasn't moved from his spot all night. I still see his gills moving, but I fear we may have a second funeral in the morning...
Loving the Merry-Go-Round....
Fishing to win our (stuffed) dolphin...
Eyeing her prize!
I can't believe she wanted on this boat!
She loved flying in the helicopters!
(For those from Somerset, the little girl in the
pink bow is Julie Bourne's little girl - small world!)
Lilly was less than enthused - she slept through most of the excitement!
Monday, May 24, 2010
Final Totals
The numbers are in and we did amazing - we raised over $12,000 on behalf of "Team Lilly" and the Lexington Great Strides event raised over $25,000! That is incredible considering that Lexington only raised $2,000 last year. A huge "thank you" to everyone!
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