Landon is a pretty lucky little boy. He has been honored to be included in two very important events in our family, my sisters wedding back in May and now Jimmy's brother's wedding this weekend! My sister's wedding, pre-diagnosis, went smoothly. At the time, he was vomitting a good bit, and I was so anxious that he would throw up all over his adorable little 6-9 month-still way too big on him tuxedo. Well he didn't.. I carried him down the aisle and he was as good as gold and the wedding was as perfect as could be!
So, here we are, in his second wedding with a diagnosis of Cystinosis and some special needs. I am a bit anxious about everything, because I wouldn't be Lauren if I weren't a bit anxious about everything going smoothly! I have a plan going through my mind constantly. I will do his first feed,then head over to the beautiful bride's house to get my hair and make up done, Jimmy will get Landon down for a nap around noon (maybe a little earlier!) and my mom and dad will come over at 1pm so that Jimmy can go to his sister's house and meet the groom and groomsmen for pictures and to head over to the church. My mom will get him ready, or maybe I will at the church, and hopefully he sits nicely in the wagon that will be pulled by his adorable cousin in her flower girl dress.. Will he sit with me or should I let him sit with one set of grandparents? Hmm.. and will I have time to get his feed and meds together at 4pm so then my parents can take him to the reception? Hopefully he doesn't throw up at all because we've been having some belly issues again. And well now, he has been going to bed a little earlier so how will he handle being up late and we are staying at the hotel so hopefully they have a crib set up, like we asked, but just in case we'll put his pack n play in the car... Yes- this is your brain as Lauren Hartz...
Despite the constant thinking, wondering and hoping going on in my head. I can't wait for this weekend! I will post pictures!!!
Oh, and I would like to note that he is still wearing a 6-9 month tuxedo, but it actually fits!!!
Thursday, September 15, 2011
Saturday, September 10, 2011
Intentions
"He's so little." We've heard it for a very long time. We are not offended by it, but I used to find that I felt like I had to explain why he was little even to complete strangers who I would never again see. Well, I explained it to the best of my ability before he was diagnosed. "Yes, he is. He's not a great eater and it's something that we are working on with him."
Well, he is still small and I still struggle with how much information is necessary. We were at a friend's house the other day talking to some great people. One mom asked if he eats well. So I explained that he is fed through a feeding tube and that we try to squeeze regular food in there as much as we can. Well, obviously that warrants additonal information so I started talking about the disease. Then I felt like a downer and that I monopolized the conversation. Soon after that, Landon was due for his Cystagon which really needs to be taken as close to "on the dot" as possible. I stood in the bathroom preparing his meds and asked Jimmy if he wanted to bring him in the bathroom or if I should bring it out there. Jimmy told me to bring it out there and that "it's quick." So I did and it was no big deal.
Here's my struggle though- I want to raise awareness. I want people to know that this disease exists. And, I never ever ever want Landon to be embarassed or ashamed of his disease, or feel that he has to hide anything. I love that he lifts his shirt up to show off his belly as he gives his Mic Key button a quick spin (ok, that makes me nervous but you understand, right?). But on the other hand, I don't want Landon to be defined by Cystinosis. He has a disease, but that is not who he is. I don't want Cystinosis to be the topic of conversation all of the time because there is so much more to him. And anyway, besides the feeding tube and medication, he is like any 17 month old little boy. Can you understand my struggle?
On another note, at his last weight check, he weighed 17lbs, 10oz. Watch out!! We actually are not going to go back until his 18 month appointment unless something comes up before then. I did, however, change his feeds a bit in hopes that he may become hungry at some point and so that we don't feel as if we are a slave to his feeds every day. He is now getting fed 6oz every 4 hours instead of 5oz every 3 hours. So far so good..
And, to end this post, tomorrow will be 10 years since our beloved country was attacked. I pray for all of the people affected by this incredible tragedy. I will never forget where I was and how I felt upon hearing the news. Many things have happened in these 10 years- I met Jimmy only weeks after 9/11 and a new chapter of my life began but I, along with the rest of America, WILL NEVER FORGET.
I have to share this song. It will bring tears to your eyes. Be prepared!
http://www.thundertreats.com/articles/awesomeness/heaven-911-september-11th-2001-nyc-tribute-kluc.html
Well, he is still small and I still struggle with how much information is necessary. We were at a friend's house the other day talking to some great people. One mom asked if he eats well. So I explained that he is fed through a feeding tube and that we try to squeeze regular food in there as much as we can. Well, obviously that warrants additonal information so I started talking about the disease. Then I felt like a downer and that I monopolized the conversation. Soon after that, Landon was due for his Cystagon which really needs to be taken as close to "on the dot" as possible. I stood in the bathroom preparing his meds and asked Jimmy if he wanted to bring him in the bathroom or if I should bring it out there. Jimmy told me to bring it out there and that "it's quick." So I did and it was no big deal.
Here's my struggle though- I want to raise awareness. I want people to know that this disease exists. And, I never ever ever want Landon to be embarassed or ashamed of his disease, or feel that he has to hide anything. I love that he lifts his shirt up to show off his belly as he gives his Mic Key button a quick spin (ok, that makes me nervous but you understand, right?). But on the other hand, I don't want Landon to be defined by Cystinosis. He has a disease, but that is not who he is. I don't want Cystinosis to be the topic of conversation all of the time because there is so much more to him. And anyway, besides the feeding tube and medication, he is like any 17 month old little boy. Can you understand my struggle?
On another note, at his last weight check, he weighed 17lbs, 10oz. Watch out!! We actually are not going to go back until his 18 month appointment unless something comes up before then. I did, however, change his feeds a bit in hopes that he may become hungry at some point and so that we don't feel as if we are a slave to his feeds every day. He is now getting fed 6oz every 4 hours instead of 5oz every 3 hours. So far so good..
And, to end this post, tomorrow will be 10 years since our beloved country was attacked. I pray for all of the people affected by this incredible tragedy. I will never forget where I was and how I felt upon hearing the news. Many things have happened in these 10 years- I met Jimmy only weeks after 9/11 and a new chapter of my life began but I, along with the rest of America, WILL NEVER FORGET.
I have to share this song. It will bring tears to your eyes. Be prepared!
http://www.thundertreats.com/articles/awesomeness/heaven-911-september-11th-2001-nyc-tribute-kluc.html
Sunday, September 4, 2011
Lots of Love for Landon Halloween Fundraiser
I just wanted to remind you that we are having our first hoping to be annual Lots of Love for Landon Halloween Fundraiser on Oct 21st at the Home Economics Room in South Park. If you would like to come, please send me an e-mail with your e-mail address at LaurenLHartz@gmail.com. Evites will be sent out soon!
"Eeeeeeeeee!!!"
Sorry I haven't posted in a while! Life is well, but very busy! Since I last posted, Landon cruises around the house with his cart like a pro! It is very funny. And now, thanks to his Daddy, yells "eeeeeeeeeee" (weeeeeeeee) the whole time! He has also has become very good at climbing up the slide backwards (he's not the rule follower that his mom is!) and slides back down on his belly. I don't mind because I feel like that is probably strengthening his legs.
He is continuing to use baby sign and the other day signed "sleep." I was thrilled! And today, I asked him for a kiss. Usually he puts his cheek against my lips but instead he came straight at me using his mouth. He's such a loveable little boy!
As you can see there is lots of good things going on. He goes for a weight check this week so hopefully I have good news in that area again! I got a call from the nephrology nurse. She told me to increase his Cystagon because his Cystine levels were raised a bit. I was bummed, but it really is to be expected. Plus, he is putting weight on which is going to result in needing an increased dose. I also had been mixing the Cystagon with his formula any time that he is sleeping. The nurse told me that it's better to put it directly into the G tube, so maybe doing that will make a difference too.
He had an interview with The Alliance for Infants and Children last week. He is getting Physical Therapy right now, but I took him out of the program that he was in. It required us to drive to Wexford, which took about 45 minutes and we had to be there at 8am. This meant that I had to wake him up earlier than when he is used to getting up and change the time of his first morning feed. He still experiences a lot of anxiety when we are there so I think having the PT at our house, in his environment, will help. He is going to go through a thorough evaluation in the next couple of weeks. At this point, the plan is to have PT and Occupational Therapy (for feeding issues) come to the house but the final decision will be made after the evaluation. I am really excited about all of this because then I will feel like we have all of our bases covered.
So all in all, things are well!!
He is continuing to use baby sign and the other day signed "sleep." I was thrilled! And today, I asked him for a kiss. Usually he puts his cheek against my lips but instead he came straight at me using his mouth. He's such a loveable little boy!
As you can see there is lots of good things going on. He goes for a weight check this week so hopefully I have good news in that area again! I got a call from the nephrology nurse. She told me to increase his Cystagon because his Cystine levels were raised a bit. I was bummed, but it really is to be expected. Plus, he is putting weight on which is going to result in needing an increased dose. I also had been mixing the Cystagon with his formula any time that he is sleeping. The nurse told me that it's better to put it directly into the G tube, so maybe doing that will make a difference too.
He had an interview with The Alliance for Infants and Children last week. He is getting Physical Therapy right now, but I took him out of the program that he was in. It required us to drive to Wexford, which took about 45 minutes and we had to be there at 8am. This meant that I had to wake him up earlier than when he is used to getting up and change the time of his first morning feed. He still experiences a lot of anxiety when we are there so I think having the PT at our house, in his environment, will help. He is going to go through a thorough evaluation in the next couple of weeks. At this point, the plan is to have PT and Occupational Therapy (for feeding issues) come to the house but the final decision will be made after the evaluation. I am really excited about all of this because then I will feel like we have all of our bases covered.
So all in all, things are well!!
Wednesday, August 24, 2011
Grow Baby Grow
Landon went to the pediatrician today for a weight check. He has gained almost 7oz in one week and he gained 4oz the week before- yes ladies and gentleman, that is just shy of 11oz in two weeks!!! He now weighs 17lbs, 4.9oz and is 28.75in long. He's catching up!!
The funny thing is that Facebook now includes your status from one or two years earlier. On this day, one year ago my status read "Landon did so well at his appt- very smiley and showing off for the nurse and nurse practitioner! Shots weren't fun but he was a trooper! 12lbs, 7oz and 26 inches long (5th percentile for weight and 75th for height)- haha.. my little peanut!"
That means that he has gained less than 5lbs in one year and 3 of those pounds has been gained in the past 3 months. Pretty amazing, right? What that tells me is that our baby is thriving!! I feel so blessed that he is tolerating the feeds and the medicine so well. I truly believe that it's only going to get better.
Oh, and just a side note, he wore his first pair of real tennis shoes today. I tried to get a picture but he wasn't cooperating. I will have to put them on him later so I can get a picture. He was standing and holding onto a chair at the doctors office and had his little t-shirt, comfy pants and his tennis shoes on. He looked like such a big boy!
Oh, and my other piece of news is that he pulled himself up onto this little cart he has yesterday and started pushing it while walking! We can NEVER get him to do this. He also sits down as soon as we begin to move it a bit. He hasn't done it since but he definitely pushed it across the room and sat down only because I clapped and he needed two hands to be able to join in with the positive reinforcement! Little ham! I am convinced that part of this not walking thing has to do with will. I don't think it's something that his body is totally ready for yet, but his own strong will also stands in the way.
The funny thing is that Facebook now includes your status from one or two years earlier. On this day, one year ago my status read "Landon did so well at his appt- very smiley and showing off for the nurse and nurse practitioner! Shots weren't fun but he was a trooper! 12lbs, 7oz and 26 inches long (5th percentile for weight and 75th for height)- haha.. my little peanut!"
That means that he has gained less than 5lbs in one year and 3 of those pounds has been gained in the past 3 months. Pretty amazing, right? What that tells me is that our baby is thriving!! I feel so blessed that he is tolerating the feeds and the medicine so well. I truly believe that it's only going to get better.
Oh, and just a side note, he wore his first pair of real tennis shoes today. I tried to get a picture but he wasn't cooperating. I will have to put them on him later so I can get a picture. He was standing and holding onto a chair at the doctors office and had his little t-shirt, comfy pants and his tennis shoes on. He looked like such a big boy!
Oh, and my other piece of news is that he pulled himself up onto this little cart he has yesterday and started pushing it while walking! We can NEVER get him to do this. He also sits down as soon as we begin to move it a bit. He hasn't done it since but he definitely pushed it across the room and sat down only because I clapped and he needed two hands to be able to join in with the positive reinforcement! Little ham! I am convinced that part of this not walking thing has to do with will. I don't think it's something that his body is totally ready for yet, but his own strong will also stands in the way.
Sunday, August 21, 2011
Landon continues to amaze us. He is our little copy cat, right now. I have been doing some baby sign with him for a while now but he never signed anything to me. Well, he is now signing "more" and "all done!" It is too cute!! He also has repeated so many words over the past week. Now, he may have only said the word once and of course he won't repeat it when prompted, but he is definitely saying new words. I am sooo proud of him!
He also climbed up our whole flight of steps today (minus the top two because he was very agitated with me by that point). He initiated the first few and then yelled at me as he made his way up the rest of them. He has climbed the flight of steps at Jason and Jamie's (Jimmy's brother and his soon to be wife) house but I think our steps are a bit steeper so it takes more effort.
He has been having bowel movements more now and has not vomited in a couple of weeks. I'm a little hesitant to ramble off all of this good news, but I can't help it!
This week Landon has Physical Therapy, a weight check and an appointment with Genetics. We learned the results of his DNA test which concluded that there is deletion on one side of the gene and a change on the other side. So basically, one of us (Jimmy and I) have a missing piece of that particular gene and the other had a gene that started off normal and then got messed up (yes, I just said got messed up!) towards the end. We don't know which is which and would have to have our own individual blood test done to find out. If insurance covers it we probably will and if not, we probably won't. It doesn't matter much for us. We know that we have a 25% chance of having a child with Cystinosis. But it may be helpful information for my sister and Jimmy's brother since both plan to have children at some point. I was told that the sibling of the person with the deletion may want to be tested but it might not be necessary for the sibling of the person who has a change in the gene. I have no idea why, which reminds me to make a list of questions for the geneticist. I promise I will provide information that makes a little bit of sense after we meet with the geneticist.
At Landon's last weight check, he was 16lbs, 14oz which means that he gained 4oz in 1 week. Yayy!! I hope that he hits 17lbs this week (fingers crossed).
As far as fundraising, we have a date and venue for our first big event! Details will be announced once some things are figured out but we are sooooo excited!!! I cannot believe how many amazing and kind hearted people we have in our lives.
He also climbed up our whole flight of steps today (minus the top two because he was very agitated with me by that point). He initiated the first few and then yelled at me as he made his way up the rest of them. He has climbed the flight of steps at Jason and Jamie's (Jimmy's brother and his soon to be wife) house but I think our steps are a bit steeper so it takes more effort.
He has been having bowel movements more now and has not vomited in a couple of weeks. I'm a little hesitant to ramble off all of this good news, but I can't help it!
This week Landon has Physical Therapy, a weight check and an appointment with Genetics. We learned the results of his DNA test which concluded that there is deletion on one side of the gene and a change on the other side. So basically, one of us (Jimmy and I) have a missing piece of that particular gene and the other had a gene that started off normal and then got messed up (yes, I just said got messed up!) towards the end. We don't know which is which and would have to have our own individual blood test done to find out. If insurance covers it we probably will and if not, we probably won't. It doesn't matter much for us. We know that we have a 25% chance of having a child with Cystinosis. But it may be helpful information for my sister and Jimmy's brother since both plan to have children at some point. I was told that the sibling of the person with the deletion may want to be tested but it might not be necessary for the sibling of the person who has a change in the gene. I have no idea why, which reminds me to make a list of questions for the geneticist. I promise I will provide information that makes a little bit of sense after we meet with the geneticist.
At Landon's last weight check, he was 16lbs, 14oz which means that he gained 4oz in 1 week. Yayy!! I hope that he hits 17lbs this week (fingers crossed).
As far as fundraising, we have a date and venue for our first big event! Details will be announced once some things are figured out but we are sooooo excited!!! I cannot believe how many amazing and kind hearted people we have in our lives.
Tuesday, August 16, 2011
Chatter Box
Okay friends... confess! Who is Landon spending so much time on the telephone talking to? You could not believe the conversations that this child has with his "friend." He used to pick up the phone and say "hewwo" but now it also involves a lengthy session in a language that only he understands. He has become so vocal over the past couple of weeks but particularly over the past few days. He now says "Mum Mum" in a way that I can only describe as an old man with no teeth saying "MumMumMumMum." He is also beginning to imitate and repeat a lot! He has also said "car" and I swear to you he said, "Daddy home" but I can't be absolutely sure.
He is cruising along the furniture very well and pulls himself up to standing (while holding onto something) and sitting back down with ease. We actually played peek a boo for about 5 minutes straight which involved him hiding behind the couch a popping up upon hearing someone say "where's Landon?" Walking? Not so much. He seems to be initiating walking with assistance (holding our hands) more, but our attempts to get him to push some of his toys that encourage him to hold on and push have been unsuccessful. He cries and wants to sit back down. I still think we have a while before walking but we are waiting patiently. I can only imagine the excitment that we will experience when he takes his first steps independently. It will be such an incredible accomplishment for him! It is for all kiddos, but I think it'll be that much more exciting because it feels we've been waiting so long.
Speaking of accomplishments, I was talking with a new friend of mine who has a beautiful little girl who also has Cystinosis. She mentioned that when her little girl hit 20lbs, they made a big deal out of it, bought a cake and a new outfit. I loved the idea!! Landon was 16lbs, 10oz at his last appointment (after a disappointing weight loss following my experiment with the feeding tube). So, be prepared when he hits 20lbs for lots of pictures and a celebration!!
One last thing I want to mention, he had a nephrology (kidney) appointment on Friday. It went well. His phosphorus level was a bit low but higher than the last appointment. This is very common for people with Cystinosis. They made some changes to his medications but are pleased with how well he is doing. We certainly have some more difficult days with the diarrhea or not pooping at all and vomiting but he really is doing exceptionally well. He tolerates the feeds and the medicine wonderfully! He is gaining weight consistently and guess what- he is actually eating better! We sit him in his high chair and give him food before each feed. He takes at least a couple of bites each time he sits down, sometimes it's only a bite or two and sometimes it is more. It is very reassuring!
He is cruising along the furniture very well and pulls himself up to standing (while holding onto something) and sitting back down with ease. We actually played peek a boo for about 5 minutes straight which involved him hiding behind the couch a popping up upon hearing someone say "where's Landon?" Walking? Not so much. He seems to be initiating walking with assistance (holding our hands) more, but our attempts to get him to push some of his toys that encourage him to hold on and push have been unsuccessful. He cries and wants to sit back down. I still think we have a while before walking but we are waiting patiently. I can only imagine the excitment that we will experience when he takes his first steps independently. It will be such an incredible accomplishment for him! It is for all kiddos, but I think it'll be that much more exciting because it feels we've been waiting so long.
Speaking of accomplishments, I was talking with a new friend of mine who has a beautiful little girl who also has Cystinosis. She mentioned that when her little girl hit 20lbs, they made a big deal out of it, bought a cake and a new outfit. I loved the idea!! Landon was 16lbs, 10oz at his last appointment (after a disappointing weight loss following my experiment with the feeding tube). So, be prepared when he hits 20lbs for lots of pictures and a celebration!!
One last thing I want to mention, he had a nephrology (kidney) appointment on Friday. It went well. His phosphorus level was a bit low but higher than the last appointment. This is very common for people with Cystinosis. They made some changes to his medications but are pleased with how well he is doing. We certainly have some more difficult days with the diarrhea or not pooping at all and vomiting but he really is doing exceptionally well. He tolerates the feeds and the medicine wonderfully! He is gaining weight consistently and guess what- he is actually eating better! We sit him in his high chair and give him food before each feed. He takes at least a couple of bites each time he sits down, sometimes it's only a bite or two and sometimes it is more. It is very reassuring!
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