Friday, July 29, 2011
Results
I received some good news as I was grocery shopping today! Landon's nephrologist called to let us know what his Cystine level was when checked about 2 weeks ago. The test included a blood draw that was sent to the only lab in the country (in California). The lower the better! We are looking for his level to be less than 1. Landon's was 1.5! When he was initially tested in the hospital, his level was 2.4. Yayy! Over the past two weeks, we have increased his dose of Cystagon from 25 mg, to 50mg the next week, to 75mg this week. Our goal was to reach 125mg which is the appropriate dose for his weight. His nephrologist was okay with keeping the dose at 75mg. He has to have another blood draw next week so we will see what that indicates. Not only did we increase the dose, but we have been giving him the medicine right through the G tube instead of putting it in the bag with his formula. Hopefully that makes even more of a difference! I will continue to update!
Wednesday, July 27, 2011
There was a beautiful article written that I wanted to share: http://natalieswish.org/files/MHPFeatureMay2011.pdf
After Landon was diagnosed, Jimmy and I immediately began to do research and wanted to connect with other families and individuals affected by Cystinosis. I posted on a Cystinosis board and Nancy Stack was the first to respond to me only hours later. Another incredible woman, Denice, responded too which gave us a glimpse of the incredible support that we would find.
We also just learned that a pharmaceutical company, studying the extended cycle form of Cystagon (the drug that treats Cystinosis) just announced that this drug is safe and that patients can take a lower dose than Cystagon. This means that Landon, and others with Cystinosis, will only have to take the drug every 12 hours rather than every 6 hours. This means that at some point, we won't have to wake in the middle of the night to give the drug to him. Woohoo! If you are interested in looking at the research, feel free.. http://www.checkorphan.org/grid/news/treatment/raptor-pharmaceutical-meets-primary-endpoint-in-its-phase-3-clinical-trial-of-dr-cysteamine-for-nephropathic-cystinosis
This is why fundraising will be so important to our family.. We share Natalie's wish in that a cure is found in Landon's life time!
After Landon was diagnosed, Jimmy and I immediately began to do research and wanted to connect with other families and individuals affected by Cystinosis. I posted on a Cystinosis board and Nancy Stack was the first to respond to me only hours later. Another incredible woman, Denice, responded too which gave us a glimpse of the incredible support that we would find.
We also just learned that a pharmaceutical company, studying the extended cycle form of Cystagon (the drug that treats Cystinosis) just announced that this drug is safe and that patients can take a lower dose than Cystagon. This means that Landon, and others with Cystinosis, will only have to take the drug every 12 hours rather than every 6 hours. This means that at some point, we won't have to wake in the middle of the night to give the drug to him. Woohoo! If you are interested in looking at the research, feel free.. http://www.checkorphan.org/grid/news/treatment/raptor-pharmaceutical-meets-primary-endpoint-in-its-phase-3-clinical-trial-of-dr-cysteamine-for-nephropathic-cystinosis
This is why fundraising will be so important to our family.. We share Natalie's wish in that a cure is found in Landon's life time!
Our "big" boy and toddler antics!
It's a beautiful day here in Pittsburgh!! Landon is napping and I really want to go for a nice long walk!! I hope that this next hour or two flies by so that we can have some fun!
So, in the mean time, here are so updates. Landon had an evaluation for Physical Therapy the other day. None of the doctors have expressed any concern about him not walking yet, but Jimmy and I decided to be proactive and have him evaluated and work with him a little bit. The therapist was pleased with a lot of his development. She watched him cruise along the table and choose different toys to play with. He flirted with her a bit until she tried to lay him down on his back. He HATES having to lay down. Diaper changes consist of two minutes of him telling me off and trying to get away. I told her not to take it personally! The appointment occurred right at nap time, which all you parents know, is just a parents worst nightmare. But overall, he did well. We are going to go to PT once a week to work on getting him to stand independently, walking, going up and down stairs. I'm excited about it. I think it'll be a fun appointment to go to and at least we'll know that we are encouraging and supporting him in reaching these new milestones. And don't worry, we didn't schedule the next appointment for nap time!
Today we went to Landon's pedatrician for a weight check. We have been going weekly and last week we were pretty bummed because he didn't gain any weight. Well guess what?! He is up 5.8oz in one week. Go Bubba!! He now weighs 16lbs, 15.8oz. C'monnn 17lbs!! It's exciting to look at the growth chart because he isn't too far off the mark. And what we have to our advantage now is that kiddos at this age are usually slowing down a bit so it gives him an opportunity to catch up! He actually can wear a few 12 month outfits. I have to admit that it was a little depressing to look at all of the adorable short outfits in his closet that he got for his birthday and knowing that he wasn't big enough to fit into them.
So of course, Brooke (Landon's pediatrician) was pleased with his growth, but she was also pleased with his little toddler antics. He decided that he was over being in the room so began to squirm and yell and cry and kick his feet. I told her that he has become a bit more "tantrumy." It's not a word, I know.. She just loved it. I'm glad someone does! She said that it is perfectly normal and that he is getting a taste of independence and desires it. How's that for looking through rose colored glasses? =0) All joking aside, I have to turn my head and laugh when throws these little fits because it seems like I just shook his world over something like telling him that he can't pull on the blinds or play with my sunglasses. You'd never know that this child has larger issues to be concerned about!
He is still having the belly issues that I mentioned in the last post, but I spoke with the nephrologist and the GI doctor and we have a plan to change the medication for his phosphorus and we are extending his feeding time 15 minutes so maybe it'll be easier on his belly. There is still not talk of weaning from the feeding tube at all, but that's okay. We will continue to encourage him to eat and hopefully once he gains a couple more pounds, we can consider it.
I also recieved lots of feedback, after the last post, about switching to cloth diapers. I think we are going to try it out. I know a few people who love cloth diapers and who are excited to show us the ropes. I'm looking forward to it!!
So, in the mean time, here are so updates. Landon had an evaluation for Physical Therapy the other day. None of the doctors have expressed any concern about him not walking yet, but Jimmy and I decided to be proactive and have him evaluated and work with him a little bit. The therapist was pleased with a lot of his development. She watched him cruise along the table and choose different toys to play with. He flirted with her a bit until she tried to lay him down on his back. He HATES having to lay down. Diaper changes consist of two minutes of him telling me off and trying to get away. I told her not to take it personally! The appointment occurred right at nap time, which all you parents know, is just a parents worst nightmare. But overall, he did well. We are going to go to PT once a week to work on getting him to stand independently, walking, going up and down stairs. I'm excited about it. I think it'll be a fun appointment to go to and at least we'll know that we are encouraging and supporting him in reaching these new milestones. And don't worry, we didn't schedule the next appointment for nap time!
Today we went to Landon's pedatrician for a weight check. We have been going weekly and last week we were pretty bummed because he didn't gain any weight. Well guess what?! He is up 5.8oz in one week. Go Bubba!! He now weighs 16lbs, 15.8oz. C'monnn 17lbs!! It's exciting to look at the growth chart because he isn't too far off the mark. And what we have to our advantage now is that kiddos at this age are usually slowing down a bit so it gives him an opportunity to catch up! He actually can wear a few 12 month outfits. I have to admit that it was a little depressing to look at all of the adorable short outfits in his closet that he got for his birthday and knowing that he wasn't big enough to fit into them.
So of course, Brooke (Landon's pediatrician) was pleased with his growth, but she was also pleased with his little toddler antics. He decided that he was over being in the room so began to squirm and yell and cry and kick his feet. I told her that he has become a bit more "tantrumy." It's not a word, I know.. She just loved it. I'm glad someone does! She said that it is perfectly normal and that he is getting a taste of independence and desires it. How's that for looking through rose colored glasses? =0) All joking aside, I have to turn my head and laugh when throws these little fits because it seems like I just shook his world over something like telling him that he can't pull on the blinds or play with my sunglasses. You'd never know that this child has larger issues to be concerned about!
He is still having the belly issues that I mentioned in the last post, but I spoke with the nephrologist and the GI doctor and we have a plan to change the medication for his phosphorus and we are extending his feeding time 15 minutes so maybe it'll be easier on his belly. There is still not talk of weaning from the feeding tube at all, but that's okay. We will continue to encourage him to eat and hopefully once he gains a couple more pounds, we can consider it.
I also recieved lots of feedback, after the last post, about switching to cloth diapers. I think we are going to try it out. I know a few people who love cloth diapers and who are excited to show us the ropes. I'm looking forward to it!!
Sunday, July 24, 2011
You are reading the words of one tired mama! We had such a busy, and very enjoyable, weekend. I had some more girl time at a very good friend's bridal shower on Saturday and then we had a 50th birthday party for another great lady in the evening! So much fun, and Landon had a great time at the birthday party. There was a gentleman who played the bag pipes and Landon listened in awe. He clapped randomly through the few minute performance. Very cute! And today, we went to Landon's first Pirate game. He looked so cute in his Pirates shirt and hat. He clapped and yelled (particularly loud during the National Anthem, sorry to say!). He was very cute though and entertained the people around us. I have to add that we were seated in the Lexus Club, right behind home plate, and definitely enjoyed the seats (thanks to Jason, Jaclyn, Jason and Jamie). We had a DELICIOUS lunch before the game and great seats with first class service!
On a less fun note, Landon has been having some issues with bodily functions. I guess I can put it that way. Hey- you want updates, right?! He has not been having healthy bowel movements(bm's) for quite some time, and particularly since starting his meds in the hospital, he has experienced lots of diarrhea. It improved a bit once his meds were tweaked a few weeks ago, but seems to be not so good again. It's not as often and as much, but it still happens every few days and that's all we get as far as bm's- not good! And now, he has started vomitting a bit. It definitely is not like it was before he was hospitalized. He used to vomit his entire feeding. That's not the case, usually, but it is still enough that it is concerning. I, at first, was afraid that his G tube moved out of place (vomitting and spitting up is one indicator that it has), but it does make sense that what he is taking in has to come out and definitely isn't coming out in the other direction. I spoke with the nephrology fellow on call over the weekend and he agreed that it makes sense that it is the medicine but that he would rather wait until Monday when the doctor who knows Landon well will be available to make the decision about his meds. So, we will see what Monday brings... Another interesting observation that I have made is that Landon seems to be producing more urine lately. We change him pretty often during the day so I don't notice it, but at night, he is definitely soaking through diapers. I began putting him in a larger size diaper at night (size 4) at the recommendation from my expert mommy friends on Landon's birthday club board. It worked for a couple of weeks, but he has even soaked through those diapers over the pas week. Ahh!! Jimmy laughed at me, but I actually put a size 3 diaper on him last night, with a size 4 on top of that. His jammie bottoms still fit over it, and his pants and sheets weren't soaked when he woke up this morning. Hopefully this continues to work. If anyone has any other suggestions, please let me know!
As for appointments this week, he has an evaluation with Physical Therapy tomorrow and a weight check on Wedensday. I scheduled PT to be proactive. I don't think he is necessarily behind yet but I want to make sure we stay ahead of the game. He is not walking yet, but I don't think anyone would be concerned yet even if he were not diagnosed with Cystinosis (and Rickets). He cruises along furniture, pulls himself up and stands holding onto furniture (or people... or Rocky...), and walks while holding onto our hands.
We planned to skip his weight check this week but he didn't gain at all last week so I didn't want to not go this week. Hopefully he has gained since we were last there. He was 16lbs, 10oz last Wednesday.
I will update more later this week! Thank you for taking the time to check in!
On a less fun note, Landon has been having some issues with bodily functions. I guess I can put it that way. Hey- you want updates, right?! He has not been having healthy bowel movements(bm's) for quite some time, and particularly since starting his meds in the hospital, he has experienced lots of diarrhea. It improved a bit once his meds were tweaked a few weeks ago, but seems to be not so good again. It's not as often and as much, but it still happens every few days and that's all we get as far as bm's- not good! And now, he has started vomitting a bit. It definitely is not like it was before he was hospitalized. He used to vomit his entire feeding. That's not the case, usually, but it is still enough that it is concerning. I, at first, was afraid that his G tube moved out of place (vomitting and spitting up is one indicator that it has), but it does make sense that what he is taking in has to come out and definitely isn't coming out in the other direction. I spoke with the nephrology fellow on call over the weekend and he agreed that it makes sense that it is the medicine but that he would rather wait until Monday when the doctor who knows Landon well will be available to make the decision about his meds. So, we will see what Monday brings... Another interesting observation that I have made is that Landon seems to be producing more urine lately. We change him pretty often during the day so I don't notice it, but at night, he is definitely soaking through diapers. I began putting him in a larger size diaper at night (size 4) at the recommendation from my expert mommy friends on Landon's birthday club board. It worked for a couple of weeks, but he has even soaked through those diapers over the pas week. Ahh!! Jimmy laughed at me, but I actually put a size 3 diaper on him last night, with a size 4 on top of that. His jammie bottoms still fit over it, and his pants and sheets weren't soaked when he woke up this morning. Hopefully this continues to work. If anyone has any other suggestions, please let me know!
As for appointments this week, he has an evaluation with Physical Therapy tomorrow and a weight check on Wedensday. I scheduled PT to be proactive. I don't think he is necessarily behind yet but I want to make sure we stay ahead of the game. He is not walking yet, but I don't think anyone would be concerned yet even if he were not diagnosed with Cystinosis (and Rickets). He cruises along furniture, pulls himself up and stands holding onto furniture (or people... or Rocky...), and walks while holding onto our hands.
We planned to skip his weight check this week but he didn't gain at all last week so I didn't want to not go this week. Hopefully he has gained since we were last there. He was 16lbs, 10oz last Wednesday.
I will update more later this week! Thank you for taking the time to check in!
Tuesday, July 19, 2011
Thank you...
Good news!! A good friend gave me such an awesome surprise- she asked a very talented jewelry maker friend of hers to design a Cause Bracelet for Cystinosis. I received this news Saturday night (my birthday was Sunday). It was absolutely the best birthday present! $5 of the proceeds from each bracelet sold will be donated to Cystinosis Research. The link is: www.cathyscreationsjewelry.com. Go to "Cause Jewelry" and then search for Landon Cystinosis Bracelet. It's beautiful, right?! Sorry guys- it is pretty feminine looking.
Not only did I get that news, but another good friend of mine called me on my birthday to tell me that she has been working on establishing a foundation in Landon's name. I don't know much about fundraising yet, but she said that she knows someone who did it for another cause and that it makes it easier to get support from businesses and local celebrities when we do have events. She mentioned that a "Casino Night" was held for this other group among other events... How cool is that?!
In addition to all of this, my dad's friend spoke with a local bar owner who is willing to host an event at his bar. I'm not sure exactly all of what it will include because I've never been to a charity event at his bar, but I'm very excited to learn the details. I know that it involves guest bartenders though (I will do you all a favor and will not fill that role!)..
So needless to say, I am thrilled and very excited to get started on all of this. You probably won't hear much until the fall because we have some pretty special events coming up in September.
The generosity that our family, friends and even people who don't know us so well have displayed is more than we could ever imagined. For everyone who has sent us a card, offered money and gift cards, visited Landon in the hospital and at home, searched Cystinosis to learn more, prayed for Landon and for our family, called us, thought about us, read this blog... thank you... Your generosity and support is priceless... Where would we be without you?
Not only did I get that news, but another good friend of mine called me on my birthday to tell me that she has been working on establishing a foundation in Landon's name. I don't know much about fundraising yet, but she said that she knows someone who did it for another cause and that it makes it easier to get support from businesses and local celebrities when we do have events. She mentioned that a "Casino Night" was held for this other group among other events... How cool is that?!
In addition to all of this, my dad's friend spoke with a local bar owner who is willing to host an event at his bar. I'm not sure exactly all of what it will include because I've never been to a charity event at his bar, but I'm very excited to learn the details. I know that it involves guest bartenders though (I will do you all a favor and will not fill that role!)..
So needless to say, I am thrilled and very excited to get started on all of this. You probably won't hear much until the fall because we have some pretty special events coming up in September.
The generosity that our family, friends and even people who don't know us so well have displayed is more than we could ever imagined. For everyone who has sent us a card, offered money and gift cards, visited Landon in the hospital and at home, searched Cystinosis to learn more, prayed for Landon and for our family, called us, thought about us, read this blog... thank you... Your generosity and support is priceless... Where would we be without you?
Saturday, July 16, 2011
A little reminder...
I drove passed a local church the other day and the quote on the sign in front of the church really stood out to me... It said, "Be a blessing." I continue to remind myself to focus on all of the ways in which I, we, are blessed. There are plenty! But, I don't often think about being a blessing to others. I should...
Inspiration
I have come across some of the most incredible people with the best attitude since being introduced to those in the Cystinosis Community (through the internet)... People who are so knowledgeable, so passionate, and just good people, to the core..
Our baby is thriving despite this diagnosis... and we have those who have come before him to thank. I have to share with you a post from the mother of the first patient who was administered cysteamine (now Cystagon- which is the drug that is used to treat Cystinosis).
"Just a little info. about cysteamine (now cystagon). Krista Mund was the first patient to be administered cystemine in 1978 at University of California, San Diego. Dr. Schneider had tried it on one other patient who was already in kidney failure and she had a very bad reaction. The day the first very small dose was administered Krista was surrounded by nurses, doctors and a crash cart in case she had a bad reaction. Each day the dose was increased by a very small amount so as to come up with a base level which would remove the cystine without side effects. This process took 9 weeks of hospitalization. Because of Krista other children were started on the cysteamine which was a very bad tasting powder form. The rest is history and we are so proud that Krista was a pioneer in using this drug that is now helping others all over the world."
Posted by mother (Merle Mund)
Pretty unbelieveable story, right?
This forum, that I have become a part of, includes people from all over the world.. I have chatted with a great man from Chile. There is a woman from the U.K. who has two beautiful daughters, both who have Cystinosis... I wish I could mention all of the incredible people. I have been reminded, through this forum, how lucky we are to live here. Some people regularly go through great lengths to get this drug that ultimately will save their child's life. It just should not be so difficult!
I can only hope that Landon inspires others in the way that these people have inspired our family!
Our baby is thriving despite this diagnosis... and we have those who have come before him to thank. I have to share with you a post from the mother of the first patient who was administered cysteamine (now Cystagon- which is the drug that is used to treat Cystinosis).
"Just a little info. about cysteamine (now cystagon). Krista Mund was the first patient to be administered cystemine in 1978 at University of California, San Diego. Dr. Schneider had tried it on one other patient who was already in kidney failure and she had a very bad reaction. The day the first very small dose was administered Krista was surrounded by nurses, doctors and a crash cart in case she had a bad reaction. Each day the dose was increased by a very small amount so as to come up with a base level which would remove the cystine without side effects. This process took 9 weeks of hospitalization. Because of Krista other children were started on the cysteamine which was a very bad tasting powder form. The rest is history and we are so proud that Krista was a pioneer in using this drug that is now helping others all over the world."
Posted by mother (Merle Mund)
Pretty unbelieveable story, right?
This forum, that I have become a part of, includes people from all over the world.. I have chatted with a great man from Chile. There is a woman from the U.K. who has two beautiful daughters, both who have Cystinosis... I wish I could mention all of the incredible people. I have been reminded, through this forum, how lucky we are to live here. Some people regularly go through great lengths to get this drug that ultimately will save their child's life. It just should not be so difficult!
I can only hope that Landon inspires others in the way that these people have inspired our family!
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