We went to see Landon's nephrologist today. You know it's going to be a good visit when she walks in to ask if I want the good news now or at the end. Of course I wanted to know! His creatinine level which is an indicator of how well the kidneys are functioning is a .3. This is what you would expect to see in a child Landon's age without Cystinosis! His kidneys are working beautifully! Another level that they keep a close eye on is his cystine level. Our goal was to get it below 1. Well, it was a .78! Yay! Yay! Yay! "Keep doing what you are doing" was our take home message!
She also said that he is growing wonderfully. He was 20 pounds! I tend to base his weight on what the pediatrician says because he is weighed in so many different places. But, it looks like we'll be due for a 20 Pound Celebration after his next weight check with the pediatrician in a couple of weeks! They are keeping a close watch on his growth in the event that we decide to give him growth hormones in the future. We'll cross that bridge when we come to it.
She also mentioned the possibility of us pursuing some research opportunities. These opportunities are at NIH (National Institute of Health) in Maryland so would involve some travel. Jimmy and I are all for it. The research is crucial in moving forward with better treatment options and a cure. It would also expose us to the most updated information.
I was thrilled with the appointment, but am not surprised by the good news (well maybe a little surprised), but I know Landon and know that there is something different about him recently. There is more life in him. He has lots of energy and is on an incredible learning curve. He isn't a baby anymore. He wants to walk in public places. He runs from room to room in our house and yells. There is just something a little different and refreshing. He is such a character! God help us when he actually speaks English (I don't know what language he speaks currently although a few words we know are thrown in there). He isn't going to stop. Jimmy and I were hysterical last night watching him run around speaking in his "outside voice," and moving from one activity to another (pushing the chair down the hall to throwing himself on the pillows to taking Rocky's toy and throwing it- away from and at Rocky). And as we're laughing, Landon looks at Jimmy, puts his head in his hands and lets out a loud exaggerated laugh in attempt to mimick Jimmy. I should also add that I had to remove, our very persistent little boy, from the Christmas tree no less than twelve times! It may be time to invest in our very own Time Out Chair!
So, what a way to enter 2012, right? It's going to be a good year. I believe that! Happy New Year friends!
Friday, December 30, 2011
Thursday, December 22, 2011
Fun Times
We had such a fun morning that I had to post about it. Jimmy has been working 11am-8pm for the past, almost, two months. It's been nice to have him home in the morning, but I do miss him being here for dinner and Landon's bed time. Anyway, I decided to jump in the shower this morning so that I could get things done around the house during Landon's nap rather than worry about getting a shower. Outside of the bathroom door, all I hear is the pitter patter of Landon's feet and the louder pitter patter of Jimmy's feet running through the house. Landon is screaming and laughing and I hear Jimmy saying, "Oh! Oh! Run! Fumble! Get the ball, Buddy (which sounds like Biddy from the way Jimmy says it)! It certainly wasn't a peaceful shower but I laughed the entire time. I can only imagine what the house is going to sound like as Landon gets bigger and bigger.
Landon was quite a little athlete today. He played football with daddy, limboed under the vacuum cord, skated across the wet kitchen and dining floor and went through a maze of chairs in the living room as I cleaned the kitchen and dining floor. And, this was all before his late morning nap. Maybe this will be a 3 hour nap kind of day?!
Landon was quite a little athlete today. He played football with daddy, limboed under the vacuum cord, skated across the wet kitchen and dining floor and went through a maze of chairs in the living room as I cleaned the kitchen and dining floor. And, this was all before his late morning nap. Maybe this will be a 3 hour nap kind of day?!
Wednesday, December 21, 2011
Endocrinology Appointment and Happy Holidays!
As mentioned, we took Landon to see an Endocrinologist yesterday because of his TSH and T4 levels. The appointment went well. We don't have any answers yet, but will after the results of another blood draw come back. The appointment started off well when a physician's assistant that I worked with while interning, as part of the behavior team, in the Weight Management Center at Children's Hospital walked into the exam room. My stress and anxiety wasn't so bad, but it was great talking with a familiar face. He collected some information and we chatted for a while before meeting with the doctor. John (the PA) and the endocrinologist talked to us about his levels and that they could not be sure, without furthering testing, if his levels are off because he has Hypothyroidism or if it's the Cystinosis and the fact that Landon's body produces very little protein. Either way- it has to be managed with medication. I did learn about why there is such a sense of urgency when these particular levels are off in children. We know that the brains of little ones (ages 0-3) develop at a very fast rate and these levels affect how children grow so it is really important to manage these levels so that the brain continues growing and developing. I sometimes joke that Landon's body is the size of a one year old (he wears 12 month clothing), but his head is the size of a 20 month old. This is a great thing, even though it does make me laugh. I was putting a t-shirt on Landon the other day and Jimmy commented that the shirt is too small. My response was, "nope, it's just a little small on his head. It fits the rest of him!" We do count our blessings in that cognitively, Landon is right on track with his peers, even if he is smaller than most of them.
One other thing I wanted to note is that two articles about Landon and Cystinosis were published in our local paper, the Pittsburgh Post Gazette, on Monday December 19th. Here are the links:
http://www.post-gazette.com/pg/11353/1197569-114.stm
http://www.post-gazette.com/pg/11353/1197575-114-0.stm
There are a few things in the article that are not totally accurate. One of the article mentions that we give Landon his Cystagon mixed with applesauce. We actually mix it with 4mL of water and it goes in a syringe through his Mic Key button. Although I think once the new 12 hour medicine is approved and Landon begins taking that (supposedly in 2010!) then we will mix that with applesauce. I speak regularly with the dad of a young boy who is on this new drug through the research study.
Also, Jimmy and I made this mistake at the beginning as well, but Cystinosis is not a disease of the kidneys hence not a "kidney disease." Just to recap, an amino acid called cystine gets into the cell but has no way to be transported out. This causes the cells to die prematurely. It affects all of the organs but primarily the kidneys and the eyes. The medicine Cystagon, that Landon takes, removes the cystine from the cells. So again, it's not that something is wrong with the kidneys but the kidneys are most affected which is why at some point Landon will need a kidney transplant. So anyway, I just wanted to clear a few things up!
Just a reminder, I have the beautiful Cystinosis bracelets that were created by Cathy in hand. If you are interested in purchasing a bracelet for $35, please let me know.l $5 will go to the Cystinosis Research Foundation.
In case I do not post again before Christmas, I want to say Happy Holidays and Merry Christmas to those who also celebrate! The fact that you take the time to log onto this site and read this blog is incredible to me. I thank you for thinking of Landon and our family and for all of your thoughts and prayers. Our Christmas cards this year read, "Believe in Love, Faith and Miracles." We live by those words. Included is a picture that is on our holiday card. He looks like a little boy now, right?!
Happy Holidays!
Love always from our family to yours,
Jimmy, Lauren, Landon & Rocky Hartz
(I apologize but I think the picture is going to be shown sideways- boo!)
One other thing I wanted to note is that two articles about Landon and Cystinosis were published in our local paper, the Pittsburgh Post Gazette, on Monday December 19th. Here are the links:
http://www.post-gazette.com/pg/11353/1197569-114.stm
http://www.post-gazette.com/pg/11353/1197575-114-0.stm
There are a few things in the article that are not totally accurate. One of the article mentions that we give Landon his Cystagon mixed with applesauce. We actually mix it with 4mL of water and it goes in a syringe through his Mic Key button. Although I think once the new 12 hour medicine is approved and Landon begins taking that (supposedly in 2010!) then we will mix that with applesauce. I speak regularly with the dad of a young boy who is on this new drug through the research study.
Also, Jimmy and I made this mistake at the beginning as well, but Cystinosis is not a disease of the kidneys hence not a "kidney disease." Just to recap, an amino acid called cystine gets into the cell but has no way to be transported out. This causes the cells to die prematurely. It affects all of the organs but primarily the kidneys and the eyes. The medicine Cystagon, that Landon takes, removes the cystine from the cells. So again, it's not that something is wrong with the kidneys but the kidneys are most affected which is why at some point Landon will need a kidney transplant. So anyway, I just wanted to clear a few things up!
Just a reminder, I have the beautiful Cystinosis bracelets that were created by Cathy in hand. If you are interested in purchasing a bracelet for $35, please let me know.l $5 will go to the Cystinosis Research Foundation.
In case I do not post again before Christmas, I want to say Happy Holidays and Merry Christmas to those who also celebrate! The fact that you take the time to log onto this site and read this blog is incredible to me. I thank you for thinking of Landon and our family and for all of your thoughts and prayers. Our Christmas cards this year read, "Believe in Love, Faith and Miracles." We live by those words. Included is a picture that is on our holiday card. He looks like a little boy now, right?!
Happy Holidays!
Love always from our family to yours,
Jimmy, Lauren, Landon & Rocky Hartz
(I apologize but I think the picture is going to be shown sideways- boo!)
Friday, December 16, 2011
Doctor Appointments
Landon had his weight check with Brooke, his pediatrician today. I was excited not only to find out his weight, but for Brooke to see that he is walking! I didn't want to get my hopes up about a gain, but I've noticed that his diapers are a bit more snug now so I thought that maybe he has gained a bit. And yes, he did! Landon gained 5 ounces in one month. He is slowly creeping up. Hopefullly it won't be too much longer before he actually gets on the growth chart. And, we are getting closer and closer to that goal of reaching 20 pounds! He now weighs 18 pounds, 11 ounces. Just to put things into perspective, I played around with a Children's Growth Chart Percentiles Calculator. A 20 month old who is 22 pounds and is 31 inches tall would be in the 3rd percentile in weight and the 4th percentile in height- so would be pretty low on the growth chart. When checked at his 18 month appointment, he was 29 inches long. Now, he may be a little bit longer because some of his pants seem a little shorter on him. I have to admit that I just went into his room, while he's asleep, and tried to measure him. It didn't help that he had his knees tucked under him. I tried to measure him anyway and he was 25 inches- ok, so that didn't work. Yes, I know. Something is really wrong that I just went upstairs, got my measuring tape and risked waking my child so I could have an accurate measurement. Don't judge. So with all of that being said, he is not "too far" from being on the growth chart. Makes me happy. =0)
On another note, I received a call from one of the nurses in the Nephrology Clinic (aka the kidney specialists). She told me that Landon's doctor wanted her to help coordinate an appointment for Landon with Endocrine. She followed this by saying that his T4 and TSH (I think she said TSH) levels were elevated based on recent blood work that he had done. I asked her to explain but she just said that they are levels that the doctor wants to keep an eye on especially considering his renal (kidney) issues and that she wanted us to check in with Endocrine. Their first available appointment is Monday, Dec 19th. I told Jimmy what she said and we both attempted to shield the "oh no, what does this mean, what is wrong now" look on our faces. Jimmy asked me again what the levels that were elevated are called, as he walked out the door to go to work. Of course, we were both going to Google it. Google was only able to create more anxiety in both of us. Fortunately, I have been able to connect online to some wonderful people who have a lot of knowledge about Cystinosis. These levels have to do with the thyroid (you may or may not have known that). From what I have learned, it is common for individuals with Cystinosis to also have problems with their thyroid. Many in the Cystinosis Group quickly wrote back that they or their children have taken or currently take a medication to keep these levels in a normal range. Brooke was able to reassure me at the weight check today, that thyroid medication generally does not have any side effects like most of Landon's meds do. The tricky thing is to time it right. It must be taken on an empty stomach and cannot be taken at the same time as a lot of other kinds of medications. So, we'll find out more on Monday, but I'm prepared to add another med to the list. He's up to 8 now. But, if it helps Landon's body to function as it needs to then so be it. We're thankful for medicine, otherwise we'd have a very sick little boy on our hands.
I will update after our visit with Endocrine on Monday.
On another note, I received a call from one of the nurses in the Nephrology Clinic (aka the kidney specialists). She told me that Landon's doctor wanted her to help coordinate an appointment for Landon with Endocrine. She followed this by saying that his T4 and TSH (I think she said TSH) levels were elevated based on recent blood work that he had done. I asked her to explain but she just said that they are levels that the doctor wants to keep an eye on especially considering his renal (kidney) issues and that she wanted us to check in with Endocrine. Their first available appointment is Monday, Dec 19th. I told Jimmy what she said and we both attempted to shield the "oh no, what does this mean, what is wrong now" look on our faces. Jimmy asked me again what the levels that were elevated are called, as he walked out the door to go to work. Of course, we were both going to Google it. Google was only able to create more anxiety in both of us. Fortunately, I have been able to connect online to some wonderful people who have a lot of knowledge about Cystinosis. These levels have to do with the thyroid (you may or may not have known that). From what I have learned, it is common for individuals with Cystinosis to also have problems with their thyroid. Many in the Cystinosis Group quickly wrote back that they or their children have taken or currently take a medication to keep these levels in a normal range. Brooke was able to reassure me at the weight check today, that thyroid medication generally does not have any side effects like most of Landon's meds do. The tricky thing is to time it right. It must be taken on an empty stomach and cannot be taken at the same time as a lot of other kinds of medications. So, we'll find out more on Monday, but I'm prepared to add another med to the list. He's up to 8 now. But, if it helps Landon's body to function as it needs to then so be it. We're thankful for medicine, otherwise we'd have a very sick little boy on our hands.
I will update after our visit with Endocrine on Monday.
Wednesday, December 14, 2011
Goodness
There are always terrible stories in the news and I feel like recently there has been a lot of bad news. My grandmother died in November, a friend died in a car accident last week (I don't think I mentioned it was the night before his son's second birthday), a family friend died yesterday... They do say that death comes in threes, right? Through all this sad news, I was reminded of the goodness in the world.
A very kind man in the Pittsburgh area, donates to charities every year. He learned about the Cystinosis Research Foundation about 5 years ago and appreciated the cause and particularly, the effects of the disease on children. He has been receiving newsletters a couple of times a year, but for the first time, was sent a copy of Cystinosis Magazine. He read through the magazine but said that some of it was saddening and he decided to stop.. right after he read one more "story." He looked and saw that the family, our family, was from Pittsburgh, so said that he just had to read it. After reading the story, he decided to look up our name in the phone book. Jimmy and I no longer have a landline phone so are not listed. He did, however, come across my father-in-law's name and gave him a call. He spoke to my father-in-law about Landon and our experience with his diganosis. Following the conversation, he sent a check in the mail, and asked that it be given to us for Landon. Fortunately, he left his phone number. I had the pleasure of speaking to him on the telephone today. He asked some questions about how Landon is doing and about the medication he takes. Several times during the conversation, he asked, "what do you need?" and "what can I do?" My heart has been touched. Jimmy and I spoke last night about this man and what he did and were amazed by the kindness of someone who does not know us, or our son.
We have been overwhelmed by the support of our family and friends. We receive kind notes, phone calls and checks that read "This is for Landon!" on a regular basis. Strangers were so kind and generous when we were organizing Landon's fundraiser in October. This was the icing on the cake and the sprinkles on top. We are so blessed.
The money will be put in an account that we have for Landon and the money is used for various things that come up and expenses related to him. The first blessing is that we have this and that we won't have to stress about paying for things that come up for him, but the other blessing is simply that someone cared that much.
A very kind man in the Pittsburgh area, donates to charities every year. He learned about the Cystinosis Research Foundation about 5 years ago and appreciated the cause and particularly, the effects of the disease on children. He has been receiving newsletters a couple of times a year, but for the first time, was sent a copy of Cystinosis Magazine. He read through the magazine but said that some of it was saddening and he decided to stop.. right after he read one more "story." He looked and saw that the family, our family, was from Pittsburgh, so said that he just had to read it. After reading the story, he decided to look up our name in the phone book. Jimmy and I no longer have a landline phone so are not listed. He did, however, come across my father-in-law's name and gave him a call. He spoke to my father-in-law about Landon and our experience with his diganosis. Following the conversation, he sent a check in the mail, and asked that it be given to us for Landon. Fortunately, he left his phone number. I had the pleasure of speaking to him on the telephone today. He asked some questions about how Landon is doing and about the medication he takes. Several times during the conversation, he asked, "what do you need?" and "what can I do?" My heart has been touched. Jimmy and I spoke last night about this man and what he did and were amazed by the kindness of someone who does not know us, or our son.
We have been overwhelmed by the support of our family and friends. We receive kind notes, phone calls and checks that read "This is for Landon!" on a regular basis. Strangers were so kind and generous when we were organizing Landon's fundraiser in October. This was the icing on the cake and the sprinkles on top. We are so blessed.
The money will be put in an account that we have for Landon and the money is used for various things that come up and expenses related to him. The first blessing is that we have this and that we won't have to stress about paying for things that come up for him, but the other blessing is simply that someone cared that much.
Tuesday, December 13, 2011
More Updates and Links
Is posting three times in one day a record for me? I don't think so, but the night's not yet over! I wanted to mention that Cathy O'Grady from Cathy's Creations sent me a handful of Cystinosis Bracelets to sell. If you want a bracelet and did not, or could not, order one from the website, please contact me by e-mail (LaurenLHartz@gmail.com), by phone, or on Facebook to purchase a beautiful bracelet and support the Cystinosis Research Foundation (CRF). Check out the bracelets on her website at www.cathyscreationsjewelry.com. Go to Cause Jewelry and then to Landon Cystinosis Bracelet. The cost is $35 and $5 will go to the CRF. If you get it through me, you won't have to pay shipping.
Also, here is another link to check out! This is about current research going on for treatment of the eyes for people with Cystinosis. Landon does not yet have crystals in his eyes or any light sensitivity, but it is only a matter of time. Currently the recommended treatment is to put drops in the eyes every waking hour of the day. Crazy, right?! We will do what we have to do to keep his eyes free of crystals, but with the current research, we may not have to do it that often. Keep praying that the treatment improves!
http://www.eye.uci.edu/newsletters/Fall2011Newsletter.pdf
Also, here is another link to check out! This is about current research going on for treatment of the eyes for people with Cystinosis. Landon does not yet have crystals in his eyes or any light sensitivity, but it is only a matter of time. Currently the recommended treatment is to put drops in the eyes every waking hour of the day. Crazy, right?! We will do what we have to do to keep his eyes free of crystals, but with the current research, we may not have to do it that often. Keep praying that the treatment improves!
http://www.eye.uci.edu/newsletters/Fall2011Newsletter.pdf
Updates and Links
Well, December 12th has arrived and Landon's story about his diagnosis with Cystinosis is not yet in the Post Gazette. I will update when I have more information.
There are two links that I wanted to share:
This first video is on Dr. Stephanie Cherqui who is a researcher who is working hard to find a cure. It's a great video and this is an amazing woman! The whole Cysinosis community is so thankful for her passion, dedication and determination. It provides so much hope. My dream is to be able to talk about a disease that Landon used to have, but was cured!
http://www.youtube.com/watch?v=V_Tsdf8WzyY&feature=relmfu
This next video is about Hank, a beautiful little boy, who also has Cystinosis. It gives you an idea of what the day to day is like for a child with Cystinosis. Our family can really relate to Hank's story. There is so much hope which is why we feel so strongly about raising money to support the research.
http://www.youtube.com/watch?v=pTvAIw1m-qI
There are two links that I wanted to share:
This first video is on Dr. Stephanie Cherqui who is a researcher who is working hard to find a cure. It's a great video and this is an amazing woman! The whole Cysinosis community is so thankful for her passion, dedication and determination. It provides so much hope. My dream is to be able to talk about a disease that Landon used to have, but was cured!
http://www.youtube.com/watch?v=V_Tsdf8WzyY&feature=relmfu
This next video is about Hank, a beautiful little boy, who also has Cystinosis. It gives you an idea of what the day to day is like for a child with Cystinosis. Our family can really relate to Hank's story. There is so much hope which is why we feel so strongly about raising money to support the research.
http://www.youtube.com/watch?v=pTvAIw1m-qI
Appreciation..
One thing that Cystinosis has given me is a strong appreciation for everything Landon does. Now I do believe that most parents treasure each and every milestone that there child experiences. But, I'm good for looking to the next thing, all of the time, and Cystinosis has taught me to live in the moment and appreciate everything. Would I beam with pride every time Landon took a bite of food if he didn't have Cystinosis? Probably not. Would I giggle every time I watched him walk around? Maybe, but it's different, at least for me.
I chose to write about this topic, at this time, because an incredible man was taken from this world last Thursday night. Our neighbor and friend, Steve "Bubs" Palumbo was killed in a car accident leaving behind his beautiful wife, three children who are 18, 5 and 2 and so many friends and family members who don't know what life will be like now that he isn't here. And, this is a man, who absolutely appreciated everything in his life. He was the most optimistic, positive person I've ever met in my entire life. "How's little man?" I keep hearing him say that over and over again. When Landon was first diagnosed with Cystinosis, our neighbors were an incredible support to us. We can home to find a collection of gift cards and a sweet card sitting on our dining room table. We had already begun forming friendships with them, but Jimmy and I never expected such an incredible group of people to live right down the street from us. They organized a fundraiser, to our surprise, to raise money for Landon. They supported us in our effort to raise money for the Cystinosis Research Foundation. We knew that we could ask them for anything and they'd be there. I will never forget the nights spent at the park, on our street. Even as Bubs kept an eye on his two young children, you felt like you had his full attention when talking to him. He loved life, he loved his family and friends and nothing was more important. He was 41 years old when he died, absolutely too young to be taken, but he appreciated every moment, every person and every action. I swear to you, after every interaction that Jimmy and I had with Bubs, we commented that he is such a good, genuine and incredible guy. He will be missed more than I think any of us can even imagine. I learned so much from him in the short period of time that I called him a friend. From now on, every time I think of Bubs, I will kiss "little man" and smile because that's what he stood for- Love and happiness.
We have our future plans, as far as fundraisers, for the Cystinosis Research Foundation. But, supporting and fundraising for Bub's children is priority right now. I have something that I am working on right now through the Thirty-One business in which I am a consultant. Please contact me by e-mail (LaurenLHartz@gmail.com), through Facebook or by phone if you want to help.
And please, cherish every moment with your children, your spouse/significant other, your friends.. Bubs certainly did..
I chose to write about this topic, at this time, because an incredible man was taken from this world last Thursday night. Our neighbor and friend, Steve "Bubs" Palumbo was killed in a car accident leaving behind his beautiful wife, three children who are 18, 5 and 2 and so many friends and family members who don't know what life will be like now that he isn't here. And, this is a man, who absolutely appreciated everything in his life. He was the most optimistic, positive person I've ever met in my entire life. "How's little man?" I keep hearing him say that over and over again. When Landon was first diagnosed with Cystinosis, our neighbors were an incredible support to us. We can home to find a collection of gift cards and a sweet card sitting on our dining room table. We had already begun forming friendships with them, but Jimmy and I never expected such an incredible group of people to live right down the street from us. They organized a fundraiser, to our surprise, to raise money for Landon. They supported us in our effort to raise money for the Cystinosis Research Foundation. We knew that we could ask them for anything and they'd be there. I will never forget the nights spent at the park, on our street. Even as Bubs kept an eye on his two young children, you felt like you had his full attention when talking to him. He loved life, he loved his family and friends and nothing was more important. He was 41 years old when he died, absolutely too young to be taken, but he appreciated every moment, every person and every action. I swear to you, after every interaction that Jimmy and I had with Bubs, we commented that he is such a good, genuine and incredible guy. He will be missed more than I think any of us can even imagine. I learned so much from him in the short period of time that I called him a friend. From now on, every time I think of Bubs, I will kiss "little man" and smile because that's what he stood for- Love and happiness.
We have our future plans, as far as fundraisers, for the Cystinosis Research Foundation. But, supporting and fundraising for Bub's children is priority right now. I have something that I am working on right now through the Thirty-One business in which I am a consultant. Please contact me by e-mail (LaurenLHartz@gmail.com), through Facebook or by phone if you want to help.
And please, cherish every moment with your children, your spouse/significant other, your friends.. Bubs certainly did..
Tuesday, December 6, 2011
Laughing
We all have gifts, talents, skills etc.. I believe that one of mine is my ability to laugh at myself. I am pretty hard on myself, but at the same time, I don't take myself too seriously, at least I don't think I do! Example #1- In my last post, I talked a bit about the struggles with Landon's cold and teething. It had been somewhat of a rough day.. Only hours after I published that last post, I cut my thumb pretty badly opening a can. Fortunately, Landon's Occupational Therapist was at the house along with my mother-in-law. The whole situation is kind of out of the ordinary. No one typically hangs around at our house during Landon's therapy sessions. He is easily distracted so I try to avoid it if possible, but I invited my mother-in-law to stay thinking that it wouldn't hurt (lucky for me!). I was distracted during the session and was making chili. I usually give 100% of my attention to the sessions, but it was pretty relaxed so I went on with what I was doing before the therapist got there. Anyway, I had Landon in one arm because I had just gotten him out of his highchair after he decided that he was no longer going to eat, and I opened the can with the other. It did not cut in two spots so being the intelligent person I always am, I bent the lid and my thumb went slipped. Ouch! It resulted in a visit to the ER (thanks to Sandy, his OT, for taking me!), 8 stitches, a DPT shot(is that the order the letters go in?)and a $60 co-pay. *sigh* Ok- I'm kind of laughing at myself but I am still pretty annoyed that I was so careless!
Maybe that wasn't the greatest example of how I can laugh at myself. Ok- here's another...I decided to take Landon to Century III Mall today so that I could "quickly" run in and grab a gift for someone that they were holding for me. If you are a parent, you know that you cannot quickly run into a store with a toddler. Silly me! My quick trip went a little like this.. Jump out of the car, put Landon's hat on, unbuckle him from the car seat, put his coat on (since he can't have it on while in the car seat), put his hat back on (he always takes it off the first time I put it on), grab the diaper bag/my purse (since I've wised up and don't carry both everywhere), run in the store, take Landon's hat and coat off (God forbid he wear it any longer than he has to), stuff it in the bag, ask the saleswoman for my purchase; pull his coat, hat, book and diapers out of the bag to find my wallet, SHOOT! I forgot my coupon in the car, load everything back in the bag and tell the saleswoman I will be back, run back out to the car (without Landon's coat or hat on); dig under the coat, hat, book, diapers and wallet to get my keys, grab the coupon from my purse, run back into the store, give the saleswoman my coupon as I set Landon and the diaper bag on the ground in front of me, Landon empties almost every item out of the diaper bag, I am told that I have to use my Macy's credit card if I want to use that coupon, I say no and explain that I do not want a Macy's credit card even if it will save me money on this purchase and I can pay it off in the store, thank the saleswoman and take the bag from her, put all of the items that Landon removed back in the diaper bag, run back out of the car (without Landon's coat or hat on)... As all of this was going on, as I was running back and forth, all I could think about was how insane I must have looked and I had to laugh...
Maybe that wasn't the greatest example of how I can laugh at myself. Ok- here's another...I decided to take Landon to Century III Mall today so that I could "quickly" run in and grab a gift for someone that they were holding for me. If you are a parent, you know that you cannot quickly run into a store with a toddler. Silly me! My quick trip went a little like this.. Jump out of the car, put Landon's hat on, unbuckle him from the car seat, put his coat on (since he can't have it on while in the car seat), put his hat back on (he always takes it off the first time I put it on), grab the diaper bag/my purse (since I've wised up and don't carry both everywhere), run in the store, take Landon's hat and coat off (God forbid he wear it any longer than he has to), stuff it in the bag, ask the saleswoman for my purchase; pull his coat, hat, book and diapers out of the bag to find my wallet, SHOOT! I forgot my coupon in the car, load everything back in the bag and tell the saleswoman I will be back, run back out to the car (without Landon's coat or hat on); dig under the coat, hat, book, diapers and wallet to get my keys, grab the coupon from my purse, run back into the store, give the saleswoman my coupon as I set Landon and the diaper bag on the ground in front of me, Landon empties almost every item out of the diaper bag, I am told that I have to use my Macy's credit card if I want to use that coupon, I say no and explain that I do not want a Macy's credit card even if it will save me money on this purchase and I can pay it off in the store, thank the saleswoman and take the bag from her, put all of the items that Landon removed back in the diaper bag, run back out of the car (without Landon's coat or hat on)... As all of this was going on, as I was running back and forth, all I could think about was how insane I must have looked and I had to laugh...
Thursday, December 1, 2011
It's been a while..
I was reminded last night, at a Thirty-One party that I was doing, that I have not updated this blog in while. I thought it was just over a week but I see now that it's been about two weeks. Time flies and things have definitely moved forward since I last posted!
Landon is walking all over the place now, yay!! Walking was on of the major milestones that we were waiting for. His Physical Therapist asked me this week if he is walking 25% of the time and I was proud to say that it is much more than that. And he is still such a little guy so it's funny to see him toddling around. Another mom in his Mommy and My Pre-school class said "look at his little swagger!" He is still using his arms to help balance so he looks a bit robotic, but nonetheless, he is doing great! He walks all through our house and was walking in the mall the other day while holding my mom's hand. He's becoming a big boy!
The other milestone that we are waiting for is 20lbs! At his last doctor's appointment he was 18lbs, 6oz (I think I mentioned that in the last post). He's getting close!
The stuffy nose and congestion that he experienced over the past few weeks has come in a full circle. We thought he got rid of it but sure enough, the other night I went in because he was crying. His nose was really stuffy and all of a sudden, he vomited all over himself and his bed. I don't even get him out of bed anymore. I change his clothes and change the sheets all while he is laying down. He throws up enough that we now can complete the whole process of cleaning up in well under a minute. Colds aren't fun for anyone, especially little ones, but it gets a little more complicated with Landon because his primary source of calories and nutrition is milk (formula). And you know when you have a cold, you stay away from milk and other dairy products because the mixture of mucous and milk doesn't sit too well in the stomach. And Landon already has some GI issues because of the Cystinosis and the meds that he takes. So, we have to cut back on his milk and experiment with how much milk he can handle and at what rate we can allow it to go into his body. A few parents from the Cystinosis Forum that I am part of take their kids off milk when they get a cold and replace it with Pedialyte. I still feel like Landon takes in enough milk, despite some vomiting, to continue giving the milk to him. If it seems as if he's not tolerating it and is throwing up a lot, then I will certainly eliminate the milk. I struggle with the thought of going backwards in weight gain because it's been so difficult to get him to where he is. And if we don't give him milk for a couple of days, that's what will happen..
Along with the cold, he is teething. Ahhh!! Right?! He has never been a bad teether. He handles it so well and it's not often that I give him Tylenol. I usually only know he's teething because he chews on EVERYTHING. And it's not just "put it in my mouth because I know I am not supposed to" but it's a "gnawing on whatever I can get my hands on" with a desperate look on his face. Well, I guess he is getting his canine teeth (the pointy ones as was described to me). Apparently, these are no fun and they break through in a way that other teeth do not so it's a different experience. He's been fussier although still not too bad, but this morning a few things have added up which made for an early nap time! The cold, teething, and getting up at 6am. He usually sleeps until 7 so 6 isn't such a big deal, but I did let him lay in there until 7 because he alternated between crying, laying down and talking. I knew he was still tired, but I surrendered right before 7 and got him out of bed.
I hope that this post didn't sound too negative. Overall, he is doing so well! And just like any child illness and teething is no fun! It just gets a bit more complicated in Landon's case. But so far, no serious sicknesses, and I pray that it stays that way throughout the winter. Odds are that he will get some kind of nasty virus this winter because a lot of kids do and I'm prepared that it may mean a couple days in the hospital to get fluids and back on track- I'm not counting on it, but am prepared! You can't keep them in a bubble, right?! Although, it is a thought.. =0)
Oh and just an update about the Post Gazette- the paper pushed back the date for publication. Landon's story about his diagnosis of Cystinosis, along with pics and information from his doctor will be in the paper on December 12th. You can view it online at www.postgazette.com.
I also want to mention that Cathy from Cathy's Creations is sending me some Cystinosis Bracelets to sell. The plan was to sell them at the fundraiser in October but we had a miscommunication about the date of the event. But, I love them and asked her to still send them to me. They cost $35 and $5 will be donated to the Cystinosis Research Foundation.
Also, there is a small fundraiser going on in which we are selling cookie dough and candles. Cookie dough is $15 and candles are $10 with the option to add a topper and base for an extra $8. We are going to be wrapping this one up soon so contact me asap if you are interested. There is no cost for shipping and no tax since it is for a fundraiser.
If you are interested in either of these fundraisers, please contact me at LaurenLHartz@gmail.com, through Facebook or by phone if you have my number.
Also, remember if you want a free copy of the Cystinosis Magazine, contact Nancy Stack at nstack@cystinosisresearch.org.
Landon is walking all over the place now, yay!! Walking was on of the major milestones that we were waiting for. His Physical Therapist asked me this week if he is walking 25% of the time and I was proud to say that it is much more than that. And he is still such a little guy so it's funny to see him toddling around. Another mom in his Mommy and My Pre-school class said "look at his little swagger!" He is still using his arms to help balance so he looks a bit robotic, but nonetheless, he is doing great! He walks all through our house and was walking in the mall the other day while holding my mom's hand. He's becoming a big boy!
The other milestone that we are waiting for is 20lbs! At his last doctor's appointment he was 18lbs, 6oz (I think I mentioned that in the last post). He's getting close!
The stuffy nose and congestion that he experienced over the past few weeks has come in a full circle. We thought he got rid of it but sure enough, the other night I went in because he was crying. His nose was really stuffy and all of a sudden, he vomited all over himself and his bed. I don't even get him out of bed anymore. I change his clothes and change the sheets all while he is laying down. He throws up enough that we now can complete the whole process of cleaning up in well under a minute. Colds aren't fun for anyone, especially little ones, but it gets a little more complicated with Landon because his primary source of calories and nutrition is milk (formula). And you know when you have a cold, you stay away from milk and other dairy products because the mixture of mucous and milk doesn't sit too well in the stomach. And Landon already has some GI issues because of the Cystinosis and the meds that he takes. So, we have to cut back on his milk and experiment with how much milk he can handle and at what rate we can allow it to go into his body. A few parents from the Cystinosis Forum that I am part of take their kids off milk when they get a cold and replace it with Pedialyte. I still feel like Landon takes in enough milk, despite some vomiting, to continue giving the milk to him. If it seems as if he's not tolerating it and is throwing up a lot, then I will certainly eliminate the milk. I struggle with the thought of going backwards in weight gain because it's been so difficult to get him to where he is. And if we don't give him milk for a couple of days, that's what will happen..
Along with the cold, he is teething. Ahhh!! Right?! He has never been a bad teether. He handles it so well and it's not often that I give him Tylenol. I usually only know he's teething because he chews on EVERYTHING. And it's not just "put it in my mouth because I know I am not supposed to" but it's a "gnawing on whatever I can get my hands on" with a desperate look on his face. Well, I guess he is getting his canine teeth (the pointy ones as was described to me). Apparently, these are no fun and they break through in a way that other teeth do not so it's a different experience. He's been fussier although still not too bad, but this morning a few things have added up which made for an early nap time! The cold, teething, and getting up at 6am. He usually sleeps until 7 so 6 isn't such a big deal, but I did let him lay in there until 7 because he alternated between crying, laying down and talking. I knew he was still tired, but I surrendered right before 7 and got him out of bed.
I hope that this post didn't sound too negative. Overall, he is doing so well! And just like any child illness and teething is no fun! It just gets a bit more complicated in Landon's case. But so far, no serious sicknesses, and I pray that it stays that way throughout the winter. Odds are that he will get some kind of nasty virus this winter because a lot of kids do and I'm prepared that it may mean a couple days in the hospital to get fluids and back on track- I'm not counting on it, but am prepared! You can't keep them in a bubble, right?! Although, it is a thought.. =0)
Oh and just an update about the Post Gazette- the paper pushed back the date for publication. Landon's story about his diagnosis of Cystinosis, along with pics and information from his doctor will be in the paper on December 12th. You can view it online at www.postgazette.com.
I also want to mention that Cathy from Cathy's Creations is sending me some Cystinosis Bracelets to sell. The plan was to sell them at the fundraiser in October but we had a miscommunication about the date of the event. But, I love them and asked her to still send them to me. They cost $35 and $5 will be donated to the Cystinosis Research Foundation.
Also, there is a small fundraiser going on in which we are selling cookie dough and candles. Cookie dough is $15 and candles are $10 with the option to add a topper and base for an extra $8. We are going to be wrapping this one up soon so contact me asap if you are interested. There is no cost for shipping and no tax since it is for a fundraiser.
If you are interested in either of these fundraisers, please contact me at LaurenLHartz@gmail.com, through Facebook or by phone if you have my number.
Also, remember if you want a free copy of the Cystinosis Magazine, contact Nancy Stack at nstack@cystinosisresearch.org.
Saturday, November 19, 2011
Big Boy
Slowly but surely, my baby boy is becoming a big boy. I pride myself in the fact that I never wished away time. I loved being the mom of a newborn. I used to lay him on his boppy in the morning and we would lay in bed and watch tv for a little while in the morning. I feel like I appreciated all of those moments when he was very little. I was amazed by him. Why would I wish away time? But, I will admit. I feel like we've had a baby for quite some time. I am so excited to have a little boy that runs around, who tells me every detail about a story, who I remind to use his manners. Some may say.. ohh just wait. You'll wish for the days that he was little. I don't think I will.. I have loved those days, but we're ready to move forward. Yes, I said "we." I think Landon is ready to be a big boy. Walking has been a big deal. We encourage, we praise, we hope, we have been working with a physical therapist. It's up to Landon now. He has been regularly taking 4-5 steps to get one from one place to another. His big motivator is daddy and I. Toys and special snacks don't do it. But let just about anyone take Landon and put him across the room from us and he will get to us just on those two feet. His eyes are often watery and his hands a big shaky in desperation to reach us, but he gets there. However, today was a nice surprise... we were at his aunt and uncle's house and continued to encourage him to walk from one person to another and he did. But at one point, he was sitting on my lap, stood up and walked away towards the kitchen. I.AM.SO.PROUD of him!
More good news- we went to see Landon's pediatrician for a weight check and flu shot this week. First of all, he was being sooo crabby. He was mad at me because I would not stand up and walk around the room holding him. But, as soon as Brooke, his pediatrician walked in, he was full of smiles and charm. Stinker! He has grown quite fond of her. I get a kick out of it! He did much better with his flu shot than mommy did. After I got mine, I complained for two days that my arm was sore. He was not at all phased by it. He cried when he got it, but that was the end of that. Thank goodness he's braver than I am! I was ready to load him up on Tylenol to stop him from experiencing the agony that I went through (haha- I told you he's braver than me). I didn't even have to give him anything. And, best yet, he weighed a whopping 18lbs, 6oz!! Wahhooo!! He gained 9oz in one month and was even getting less of his feed because of a cold that was making him vomit. Plus, he was vomiting off and on. Way to go, Landon!
Last but certainly not least, the Cystinosis Magazine is now available. There is article that I wrote about Landon included in the magazine. I got a bunch of copies to give out, but if you'd like to request a copy- they are free. You can e-mail Nancy Stack at nstack@cystinosisresearch.org. Nancy has been a huge support to us since Landon's diagnosis. Her beautiful daughter Natalie was diagnosed with Cystinosis as a baby. She is now in college and has been incredibly successful. Nancy and her husband founded he Cystinosis Research Foundation which is the group that we have been working to raise money for. 100% of the money that goes to the Foundation goes towards research. They have just offered grants to several researchers. It's all very exciting!! Not only is Landon's story featured in there, but there are amazing stories about other people and families affected by this disease and some great information about the disease and the research going on right now. It offers so much hope!
Oh, and one more thing- the article in the Post Gazette will be out on Nov 28th. Make sure to grab your copy of the PG or check it out online at www.postgazette.com. I assume that it will be printed online too. A journalist did a phone interview with me and with Landon's nephrologist. I am very excited to read the article. A photographer also came to our house to take pictures. Landon maintained a poker face the entire time- well until the photographer was walking out the door. He said "buh buh" (buh bye) and blew a kiss.
More good news- we went to see Landon's pediatrician for a weight check and flu shot this week. First of all, he was being sooo crabby. He was mad at me because I would not stand up and walk around the room holding him. But, as soon as Brooke, his pediatrician walked in, he was full of smiles and charm. Stinker! He has grown quite fond of her. I get a kick out of it! He did much better with his flu shot than mommy did. After I got mine, I complained for two days that my arm was sore. He was not at all phased by it. He cried when he got it, but that was the end of that. Thank goodness he's braver than I am! I was ready to load him up on Tylenol to stop him from experiencing the agony that I went through (haha- I told you he's braver than me). I didn't even have to give him anything. And, best yet, he weighed a whopping 18lbs, 6oz!! Wahhooo!! He gained 9oz in one month and was even getting less of his feed because of a cold that was making him vomit. Plus, he was vomiting off and on. Way to go, Landon!
Last but certainly not least, the Cystinosis Magazine is now available. There is article that I wrote about Landon included in the magazine. I got a bunch of copies to give out, but if you'd like to request a copy- they are free. You can e-mail Nancy Stack at nstack@cystinosisresearch.org. Nancy has been a huge support to us since Landon's diagnosis. Her beautiful daughter Natalie was diagnosed with Cystinosis as a baby. She is now in college and has been incredibly successful. Nancy and her husband founded he Cystinosis Research Foundation which is the group that we have been working to raise money for. 100% of the money that goes to the Foundation goes towards research. They have just offered grants to several researchers. It's all very exciting!! Not only is Landon's story featured in there, but there are amazing stories about other people and families affected by this disease and some great information about the disease and the research going on right now. It offers so much hope!
Oh, and one more thing- the article in the Post Gazette will be out on Nov 28th. Make sure to grab your copy of the PG or check it out online at www.postgazette.com. I assume that it will be printed online too. A journalist did a phone interview with me and with Landon's nephrologist. I am very excited to read the article. A photographer also came to our house to take pictures. Landon maintained a poker face the entire time- well until the photographer was walking out the door. He said "buh buh" (buh bye) and blew a kiss.
Tuesday, November 15, 2011
Thank You...
We are half way through the month when we are reminded to think about what we are thankful for. Ideally I would post on this blog every day something that I am thankful for, but that hasn't happened! I have to say though, I think of things every day that make me thankful. So, here it goes for the first half of the month.
I am thankful for:
1. That little voice that talks himself to sleep at nap and bed time. He sometimes blows kisses too. I wonder if it's to his giraffe?
2. To be involved in so many groups online and in real life that provide support and love- Landon's Mommy and Me Pre-School Class, my April Birthday Club Mommies, South Hills Moms Group, Cystinosis Families Group and Women's Lair Group.
3. To have so many people interested in hearing Landon's story. I wrote an article about our journey with Landon in being diagnosed with Cystinosis for Cystinosis Magazine and was just interviewed by the Post Gazette about this journey and have another interview that is supposed to happen in the near future.
4. For a husband who has the energy and brings his A game when I don't have it in me. It's so refreshing to hear Jimmy in the living room playing with Landon and encouraging him to walk as I clean up after dinner.
5. For Landon's grandparents, aunts and uncles who have learned how to start up and stop his feeds, how to administer meds and how to handle whatever situation may come up while Jimmy and I aren't there. They don't hesitate for a second when we ask any one of them to watch Landon.
6. For Landon's great grandparents who beam with pride when they see him. He is so blessed to have known 3 great grandparents in his life.
7. For Landon's big cousin, Jillian- no one gets him quite as excited as she can!
8. For great aunts and uncles who kiss him, spoil him and support us in ways that we appreciate so very much!
9. For incredible neighbors who I can't say enough about. They've organized fundraisers, attended fundraisers, and have just been great friends all around. We live for those summer nights at the park.. We are so blessed that Landon, and we, will always be around friends.
10. For Rocky! Yes, Rocky our dog. He tolerates being poked and pulled at by our little wild man despite our constant reminders to be nice to Rocky. And, he even gives in at times and allows Landon to cuddle with him or plays tug of war with him.
11. For opportunity- I have recently become a Thirty-One Gifts consultant. So far, it has allowed me to make money, contribute financially to our family and gives me some adult time with wonderful women but also allows a lot of flexibility so I can be here for Landon like I need and want to be.
12. For a mischievous little boy who smiles and looks at me as he does something that he knows he's not supposed to do. He's growing up. He's not a baby like he seemed to be for such a long time.
13. Teachers- Our mothers, Landon's physical therapist, occupational therapist, his pre-school teachers, people on the Cystinosis Boards... I learn something from you all of the time. Thank you for teaching me so that I can be more knowledgeable and a better mother to my son.
14. For my sister, my sister-n-laws, my girl friends... the girl talks, the laughs, the hugs and tears. What would I do without you?
15. My mom- for everything.
I am thankful for:
1. That little voice that talks himself to sleep at nap and bed time. He sometimes blows kisses too. I wonder if it's to his giraffe?
2. To be involved in so many groups online and in real life that provide support and love- Landon's Mommy and Me Pre-School Class, my April Birthday Club Mommies, South Hills Moms Group, Cystinosis Families Group and Women's Lair Group.
3. To have so many people interested in hearing Landon's story. I wrote an article about our journey with Landon in being diagnosed with Cystinosis for Cystinosis Magazine and was just interviewed by the Post Gazette about this journey and have another interview that is supposed to happen in the near future.
4. For a husband who has the energy and brings his A game when I don't have it in me. It's so refreshing to hear Jimmy in the living room playing with Landon and encouraging him to walk as I clean up after dinner.
5. For Landon's grandparents, aunts and uncles who have learned how to start up and stop his feeds, how to administer meds and how to handle whatever situation may come up while Jimmy and I aren't there. They don't hesitate for a second when we ask any one of them to watch Landon.
6. For Landon's great grandparents who beam with pride when they see him. He is so blessed to have known 3 great grandparents in his life.
7. For Landon's big cousin, Jillian- no one gets him quite as excited as she can!
8. For great aunts and uncles who kiss him, spoil him and support us in ways that we appreciate so very much!
9. For incredible neighbors who I can't say enough about. They've organized fundraisers, attended fundraisers, and have just been great friends all around. We live for those summer nights at the park.. We are so blessed that Landon, and we, will always be around friends.
10. For Rocky! Yes, Rocky our dog. He tolerates being poked and pulled at by our little wild man despite our constant reminders to be nice to Rocky. And, he even gives in at times and allows Landon to cuddle with him or plays tug of war with him.
11. For opportunity- I have recently become a Thirty-One Gifts consultant. So far, it has allowed me to make money, contribute financially to our family and gives me some adult time with wonderful women but also allows a lot of flexibility so I can be here for Landon like I need and want to be.
12. For a mischievous little boy who smiles and looks at me as he does something that he knows he's not supposed to do. He's growing up. He's not a baby like he seemed to be for such a long time.
13. Teachers- Our mothers, Landon's physical therapist, occupational therapist, his pre-school teachers, people on the Cystinosis Boards... I learn something from you all of the time. Thank you for teaching me so that I can be more knowledgeable and a better mother to my son.
14. For my sister, my sister-n-laws, my girl friends... the girl talks, the laughs, the hugs and tears. What would I do without you?
15. My mom- for everything.
Wednesday, November 9, 2011
Random
"You'll never know how strong you are until strong is the only choice you have." - Author unknown (at least to me)
A woman on Etsy creates hand painted signs and this was what one of them read. The signs are beautiful (Cait & Create is the name). I won't be buying this one because I think it will make me feel emotional every time I see it. =0) I do, however, plan to buy an adorable chalk board that reads "I Love You Because..." It makes me smile to think of having it on the wall, maybe in our kitchen?
So, you'll have to humor me because I think this post is going to include lots of random thoughts. Jimmy is out of town which means the house is quiet (since Landon has gone to bed) and I am left to my thoughts.
I have some good news! The Lots of Love for Landon Halloween Fundraiser raised about $6,700!!! This is wonderful, especially for our first event! Thank you to everyone who supported us!! I was also asked to write an article about Landon's story for Cystinosis Magazine. The Cystinosis Research Foundation publishes this magazine. Well, I wrote the article and the magazine is finished. We should be getting copies this week or next. I am so excited to see it!! I think it will also be available electronically, so I will include the link!
I warned you that this post was going to be random. I hope I did not disappoint!
A woman on Etsy creates hand painted signs and this was what one of them read. The signs are beautiful (Cait & Create is the name). I won't be buying this one because I think it will make me feel emotional every time I see it. =0) I do, however, plan to buy an adorable chalk board that reads "I Love You Because..." It makes me smile to think of having it on the wall, maybe in our kitchen?
So, you'll have to humor me because I think this post is going to include lots of random thoughts. Jimmy is out of town which means the house is quiet (since Landon has gone to bed) and I am left to my thoughts.
I have some good news! The Lots of Love for Landon Halloween Fundraiser raised about $6,700!!! This is wonderful, especially for our first event! Thank you to everyone who supported us!! I was also asked to write an article about Landon's story for Cystinosis Magazine. The Cystinosis Research Foundation publishes this magazine. Well, I wrote the article and the magazine is finished. We should be getting copies this week or next. I am so excited to see it!! I think it will also be available electronically, so I will include the link!
I warned you that this post was going to be random. I hope I did not disappoint!
Monday, November 7, 2011
Sad Weekend..
It was quite a weekend- very busy and very sad. My grandmother's viewing was on Sunday and her funeral was today. My sister and I read from the New and Old Testament. The reading my dad selected for me was from Proverbs 31. The ironic thing about this is that I just became a consultant for Thirty-One Gifts, which is named after this particular reading in the Old Testament. It is a celebration of women and as I read, I realized that it really described my grandmother. She took care of her family until the day she became very sick.
So, it was an emotional day. My grandmother lived a long life, blessed to be here with us until the age of 83. She suffered, but only for a short period of time. She never had to hear that she had cancer- never had to face the reality of her death. I imagine that she knew her time was limited, as she was 83, and was beginning to feel 83, but no one ever had to tell her that she was going to die in a very short period of time. But, despite all of this, I and my family, feel sad not to have her anymore. I feel especially sad for my grandfather who lost his wife of 60+ years.
As I walked into the funeral home today, knowing that this was going to be our final goodbye, I cried. I was holding Landon and he looked at me with a very concerned look on his face. He then reached over, pressed his lips together and gave me a kiss (including the muah sound effect!). He did this almost every time he saw me crying. What an empathetic little boy we have, right?! =0)
He was a breath of fresh air this weekend. He crawled around the funeral home like we were at home. He's quite a ham! He blew kisses, gave kisses, chased my aunt around while hysterically laughing (don't you just love a belly laugh out of an almost 19 month old?). I noticed my grandfather, as he sat on a chair by the casket, smile and laugh as Landon kept crawling up to the casket and climbing on the kneeler. He was very persistent about wanting to give his great grandmother kisses. How could he not? She was lying so peacefully and looked so beautiful (it sounds strange, but was true!). I convinced him to blow kisses.
Landon was really a perfect little angel this weekend. He entertained at the funeral home and sat quietly at church (he entertained himself in church by brushing his hair with a brush he found in my purse). I know that his great grandma was smiling as she looked down on him.
And as always, Jimmy and I were overwhelmed by the generosity of family and friends. My grandfather included in the obituary that people can make donations to the Cystinosis Research Foundation in memory of my grandmother and in honor of Landon. People did just that. My grandmother adored Landon and worried about him more than I think she let on to anyone. Many candles were lit for him by her and anyone who she could talk to about him. I believe that Landon has several angels looking down on him, but I know this one in particular will watch very closely over him. We love you, Gram!
So, it was an emotional day. My grandmother lived a long life, blessed to be here with us until the age of 83. She suffered, but only for a short period of time. She never had to hear that she had cancer- never had to face the reality of her death. I imagine that she knew her time was limited, as she was 83, and was beginning to feel 83, but no one ever had to tell her that she was going to die in a very short period of time. But, despite all of this, I and my family, feel sad not to have her anymore. I feel especially sad for my grandfather who lost his wife of 60+ years.
As I walked into the funeral home today, knowing that this was going to be our final goodbye, I cried. I was holding Landon and he looked at me with a very concerned look on his face. He then reached over, pressed his lips together and gave me a kiss (including the muah sound effect!). He did this almost every time he saw me crying. What an empathetic little boy we have, right?! =0)
He was a breath of fresh air this weekend. He crawled around the funeral home like we were at home. He's quite a ham! He blew kisses, gave kisses, chased my aunt around while hysterically laughing (don't you just love a belly laugh out of an almost 19 month old?). I noticed my grandfather, as he sat on a chair by the casket, smile and laugh as Landon kept crawling up to the casket and climbing on the kneeler. He was very persistent about wanting to give his great grandmother kisses. How could he not? She was lying so peacefully and looked so beautiful (it sounds strange, but was true!). I convinced him to blow kisses.
Landon was really a perfect little angel this weekend. He entertained at the funeral home and sat quietly at church (he entertained himself in church by brushing his hair with a brush he found in my purse). I know that his great grandma was smiling as she looked down on him.
And as always, Jimmy and I were overwhelmed by the generosity of family and friends. My grandfather included in the obituary that people can make donations to the Cystinosis Research Foundation in memory of my grandmother and in honor of Landon. People did just that. My grandmother adored Landon and worried about him more than I think she let on to anyone. Many candles were lit for him by her and anyone who she could talk to about him. I believe that Landon has several angels looking down on him, but I know this one in particular will watch very closely over him. We love you, Gram!
Thursday, November 3, 2011
A New Angel
Landon is a light in the lives of lots of people around him- his parents, grandparents, aunts, uncles, great aunts and uncles and his great grandparents. He was blessed to have three great grandparents. That changed today... My paternal grandmother, Landon's great grandmother, died today. The big C word- Cancer, took her life. It was about 2 months ago that we noticed that grandma wasn't her usual self. Usually very talkative, she was very quiet and observant. Her energy level decreased and she seemed so tired. The past couple of weeks have been quite a rollercoaster. She was admitted to one hospital, then to a nursing home, then to another hospital.. She had lung cancer (no, she never smoked if you were wondering) which spread to her kidney and probably her bones and brain. She stated in her will that she didn't want surgery or any invasive procedures- so, no biopsy. We won't know the extent of damage the cancer caused. Do we need to know that? Nah..
We have known for about a week that her time here with us was limited. On Monday, Halloween, I dressed Landon in his Buzz Light Year costume and we went to the hospital. I prayed that he would behave and that she would know that he was there. We walked in the room and he began to cry a little. I told him to say "Hi to grandma." He pressed his lips together and made the sound he makes when he is getting ready to give a kiss. I brought him down to her, she pressed her lips together, and they gave each other kisses. I was happy and so relieved. She struggled to stay awake during our visit, but opened her eyes for a moment several times during our visit to talk to him. We couldn't hear or understand her but it was ok. They gave each other kisses when we left and she said "I love you" to him. We understood that. My prayers were answered.. Landon did behave and she knew that he was there. We love you Grandma.
We have known for about a week that her time here with us was limited. On Monday, Halloween, I dressed Landon in his Buzz Light Year costume and we went to the hospital. I prayed that he would behave and that she would know that he was there. We walked in the room and he began to cry a little. I told him to say "Hi to grandma." He pressed his lips together and made the sound he makes when he is getting ready to give a kiss. I brought him down to her, she pressed her lips together, and they gave each other kisses. I was happy and so relieved. She struggled to stay awake during our visit, but opened her eyes for a moment several times during our visit to talk to him. We couldn't hear or understand her but it was ok. They gave each other kisses when we left and she said "I love you" to him. We understood that. My prayers were answered.. Landon did behave and she knew that he was there. We love you Grandma.
Wednesday, October 26, 2011
My Little Comedian
I cannot even count the number of times that Landon stood independently today. He raises himself from a kneeling position, not holding onto anything, and raises up to a standing position. You just have to picture it because half of the time, his legs are spread pretty wide apart and he gets a huge grin on his face. It's as if he is saying "Look Mom, no hands!" We make a HUGE deal out of it for one, because he loves positive reinforcement and two, it is a big deal to us! He even attempted a couple steps today only to fall into me with a scream and a big smile. It's only a matter of time, my friends. I wanted to get a picture of it but kept forgetting to grab the camera which was downstairs, and my cell phone memory card was being goofy so I couldn't take pictures with my cell phone. Finally when Jimmy got home and he began to perform for him, I told Jimmy to have his cell phone ready to take pictures. The minute Jimmy pulled his phone out, Landon sits on the floor, smiles wide and says "Chhheeessseee!!" It was clear as day. He continued to do that every time Jimmy picked up his phone.
This child makes me laugh from the moment he wakes up until the time he goes to sleep. Don't get me wrong in between, there are lots of "No Landon. Nice hands, please. Mommy can't hold you right now. Don't throw your food to Rocky. Stop. That's not okay. You have to listen to Mommy..." But, he really is a funny little boy. Examples? I'm glad you asked! =0)
* When I go to his room in the morning, he does acrobats in his crib for 5-10 minutes before I can get him out of the crib.
* He gets up on his feet and leans on tupperware containers/baskets that hold books and toys and flies down the hall way, pushing them, with his little bum up in the air.
*When he becomes to rough and I have to remind him to use "nice hands", he quickly pats the object that he was just hitting (usually its Rocky) and says "awwwwww..."
* When he no longer wants to eat his food, he throws it to Rocky. After being told not to, he looks us straight in the eye, smiles and with the flick of his arm whips food on the ground all the while, continuing to stare at us.
* He knows exactly how to hold a camera to take pictures.
* His voice gets VERY loud when he says "hello" when talking on the phone. Plus, he looks down and pushes the buttons on the phone as if he is desperate to get a text out before we take the phone off of him.
* He dances at the first sound of music (or any noise really)..
* He winds up when he blows kisses and even blows kisses in the car and when he is alone in his room. It sounds kind of like "muuuuuuuuuaaaaaahhhhhh!!!"
* I put him on the couch and pulls up the blinds when I know that Jimmy is almost home. He yells "Daddy! Daddy! Daddy!" until Jimmy actually drives down the street and pulls in the driveway, all while pacing back and forth on the couch and laughing.
Ok, I guess I can stop there. What can I say? I can't get enough of him!
This child makes me laugh from the moment he wakes up until the time he goes to sleep. Don't get me wrong in between, there are lots of "No Landon. Nice hands, please. Mommy can't hold you right now. Don't throw your food to Rocky. Stop. That's not okay. You have to listen to Mommy..." But, he really is a funny little boy. Examples? I'm glad you asked! =0)
* When I go to his room in the morning, he does acrobats in his crib for 5-10 minutes before I can get him out of the crib.
* He gets up on his feet and leans on tupperware containers/baskets that hold books and toys and flies down the hall way, pushing them, with his little bum up in the air.
*When he becomes to rough and I have to remind him to use "nice hands", he quickly pats the object that he was just hitting (usually its Rocky) and says "awwwwww..."
* When he no longer wants to eat his food, he throws it to Rocky. After being told not to, he looks us straight in the eye, smiles and with the flick of his arm whips food on the ground all the while, continuing to stare at us.
* He knows exactly how to hold a camera to take pictures.
* His voice gets VERY loud when he says "hello" when talking on the phone. Plus, he looks down and pushes the buttons on the phone as if he is desperate to get a text out before we take the phone off of him.
* He dances at the first sound of music (or any noise really)..
* He winds up when he blows kisses and even blows kisses in the car and when he is alone in his room. It sounds kind of like "muuuuuuuuuaaaaaahhhhhh!!!"
* I put him on the couch and pulls up the blinds when I know that Jimmy is almost home. He yells "Daddy! Daddy! Daddy!" until Jimmy actually drives down the street and pulls in the driveway, all while pacing back and forth on the couch and laughing.
Ok, I guess I can stop there. What can I say? I can't get enough of him!
Tuesday, October 25, 2011
Thanks, but...
Ever since Landon was hospitalized Jimmy and I have gotten many compliments about who we are as parents. Jimmy walked in one day, after work, full of smiles, jokes and energy. I think he was singing or dancing to make Landon laugh. The nurse told me, as Jimmy did his daily walk through the hall of 7a, that she just wishes that all dads were like Jimmy. She was right but I guess this story kind of defeats my purpose of this post. Its one of my favorites though so you'll forgive me, right?
I received a very sweet and complimenting message from a great friend today. It brought tears to my eyes, and got me thinking. Am I really doing anything that most other moms would do? I don't think so. Jimmy and I love Landon more than we've ever imagined we could. We are blessed beyond belief to have him in our lives. He is beautiful and loveable and funny and curious and persistent and resilient. Believe me, hearing that I am a great mom always tugs at my heart strings because it is the most important job I have ever had, but moms and dads- you would do the same thing. :o)
I received a very sweet and complimenting message from a great friend today. It brought tears to my eyes, and got me thinking. Am I really doing anything that most other moms would do? I don't think so. Jimmy and I love Landon more than we've ever imagined we could. We are blessed beyond belief to have him in our lives. He is beautiful and loveable and funny and curious and persistent and resilient. Believe me, hearing that I am a great mom always tugs at my heart strings because it is the most important job I have ever had, but moms and dads- you would do the same thing. :o)
Lots of Love for Landon
Our first big fundraiser for the Cystinosis Research Foundation was a big success! I don't have exact numbers as far as how much we are donating to the CRF in total or how many people were there, so I will have to update when I have that information. It seemed like everyone had a good time and lots of great prizes were won. We are overwhelmed by the generosity of those around us. Landon is a lucky little boy! We are all very blessed! Thank you! Thank you! Thank you!
Things have been quiet lately. Landon began vomiting daily again so I decided to go back to where we were with his feeds. We are now back to 4 tube feedings during the day with a lesser amount of formula, rather than 3 tube feedings with a bit more formula. I'm not sure what changed by his belly doesn't seem to be tolerating it well so we do a little at a time. It hasn't been so bad. It's just a little harder to get out of the house for any period of time. We also both have colds. Jimmy had it last week and we seemed to have caught it now. I'm wondering if he may have a touch of a virus that is contributing to a more sensitive belly. So, we are washing our hands lots and trying to take it easy so that it doesn't turn into anything else!
We continue on with Physical Therapy, Occupational Therapy (for eating) and Mommy and Me Pre-School (it's called First Experience) weekly. He's not yet walking but is so close! He stood independently for about 5 seconds 3 times while at school today. Any time now.. Although, I was thinking the other day. What is it going to be like to follow a child around, connected to a feeding tube, who is walking rather than crawling.. Hmm.. Landon, taking your time, Love!
Things have been quiet lately. Landon began vomiting daily again so I decided to go back to where we were with his feeds. We are now back to 4 tube feedings during the day with a lesser amount of formula, rather than 3 tube feedings with a bit more formula. I'm not sure what changed by his belly doesn't seem to be tolerating it well so we do a little at a time. It hasn't been so bad. It's just a little harder to get out of the house for any period of time. We also both have colds. Jimmy had it last week and we seemed to have caught it now. I'm wondering if he may have a touch of a virus that is contributing to a more sensitive belly. So, we are washing our hands lots and trying to take it easy so that it doesn't turn into anything else!
We continue on with Physical Therapy, Occupational Therapy (for eating) and Mommy and Me Pre-School (it's called First Experience) weekly. He's not yet walking but is so close! He stood independently for about 5 seconds 3 times while at school today. Any time now.. Although, I was thinking the other day. What is it going to be like to follow a child around, connected to a feeding tube, who is walking rather than crawling.. Hmm.. Landon, taking your time, Love!
Friday, October 14, 2011
That Can't Be Landon!
Today my mom and I took Landon to his appointment with his nephrologist. The appointment went well. We learned that Landon's levels look great. His calcium is a bit high (just a tiny bit) so she wants to keep an eye on that. His phosphorus level is at a 3 right now, ideally they would like to see it at 4. It has improved over the past couple of months. We will now see her every 3 months and will get blood work every 6 weeks instead of 4 weeks. It's a strange feeling. I like the reassurances that I get from seeing Landon's doctors regularly, but on the other hand, I love the idea of having a "normal" life and not going to Children's Hospital every couple of weeks. Plus, now that flu season is around the corner, I certainly want to stay away from hospitals in hopes to avoid a rough winter!
I have to say that I find much comfort in seeing Dr. Nguyen. For one thing, she was with us through our entire stay at Children's Hospital. She was one of the 3 doctors who sat in front of me on June 6th and told me that our son has Cystinosis. Today she saw Landon in the hall with my mom and said that she checked the schedule because she could not believe that it was Landon. She said that he looks wonderful and has put on so much weight. It's so good to hear especially since I am with him every day, so it's hard for me to see the difference.
We also got to meet another doctor in the practice, Dr. Ellis. He has a lot of experience working with people who have Cystinosis. He complimented our efforts and involvement in Cystinosis research and in the community. He was so positive and optimistic and told me about a man who has a son in his early 20s. His son is doing wonderfully and he said that he does not look sick at all. He experiences very little problems with his eyes because he has been so consistent with taking the medicine and putting the eye drops in his eyes. That was also very good to hear! It means that this disease does not have to get the best of Landon and that there is some control in all of this. Will it progress? Yes. Will crystals develop in Landon's eyes? Yes. Will he need a kidney transplant? Yes, not for a very long time, hopefully! But, his future looks bright!
I have to say that I find much comfort in seeing Dr. Nguyen. For one thing, she was with us through our entire stay at Children's Hospital. She was one of the 3 doctors who sat in front of me on June 6th and told me that our son has Cystinosis. Today she saw Landon in the hall with my mom and said that she checked the schedule because she could not believe that it was Landon. She said that he looks wonderful and has put on so much weight. It's so good to hear especially since I am with him every day, so it's hard for me to see the difference.
We also got to meet another doctor in the practice, Dr. Ellis. He has a lot of experience working with people who have Cystinosis. He complimented our efforts and involvement in Cystinosis research and in the community. He was so positive and optimistic and told me about a man who has a son in his early 20s. His son is doing wonderfully and he said that he does not look sick at all. He experiences very little problems with his eyes because he has been so consistent with taking the medicine and putting the eye drops in his eyes. That was also very good to hear! It means that this disease does not have to get the best of Landon and that there is some control in all of this. Will it progress? Yes. Will crystals develop in Landon's eyes? Yes. Will he need a kidney transplant? Yes, not for a very long time, hopefully! But, his future looks bright!
Wednesday, October 12, 2011
Resiliency
Landon's Physical Therapist came to our house this morning. This was the second meeting. Landon did wonderfully during the first session. He was cooperating for most of the hour that she was there. He allowed her to touch him and sat on her lap. I could not believe it. I wondered if it may have helped that I was not there when she first arrived. Jimmy's parents were watching Landon so I got there a few minutes later and he had an opportunity to play with her without looking for me or wanting me to help him instead.
He was not quite so cooperative this time. He didn't even want me to do the tasks with him (i.e. supporting his waist to stand him up to get a toy). A big part of the problem was that the session began right before nap time. Not ideal at all! I talked about this with the therapist ahead of time, but we had no choice this week so we went for it. The therapist asked if she could hold him and if he would let her, in an attempt to build rapport with him. I told her that he would not, but that she could take him into his room or play room and that I would stay in the kitchen. It took him a few minutes to stop crying (screaming) but then I would hear silence. Music to my ears because I would love for him to be a little more comfortable with people he doesn't see all of the time. Then I would hear screaming again.. This went on for a good 20-25 minutes.
As soon as I heard, "let's go find Mommy. We're all done." I peeked around the corner to find her holding him and tears streaming down his face. He reached for me and once he realized that we weren't going to "work" anymore, he calmed down.
Melissa gave me some recommendations and positive feedback. He seems to be walking better (with assistance) this week compared to last week. She said that he has great toys to play with and that we should try to raise them a bit (particularly in his room) because he can easily crawl and sit to play with all of his toys. She commented on the number of toys he has and said that she doesn't have to bring her toys with her to our sessions *sigh* (I know this...). We have such generous family members and friends who buy and pass along their kids' toys to Landon! But, what she said next really struck me. She said, "I can tell that Landon has been through a lot, but he has really great coping skills for as young as he is." Now, I have worried about Landon's anxiety and coping in the past so it felt good to hear this. I asked her why she said that so she told me that even when Landon gets upset, he maintains his composure and then after a few minutes he just decides to deal with it. She said, at no point, did he seem comfortable with the fact that she was there and I wasn't, but he went along with what she was doing. He became upset when she tried to get him to walk and stand probably because he was tired and not in the mood. She also said that he is a thinker. He likes to figure things out and really concentrates on the task at hand. That is definitely Jimmy! What I noticed about him, which is a lot like me, is that he will continue to try to make something work even when we redirect him to do it the "correct" way. It's almost as if to say, "I need to find out for myself that it doesn't work." This has been reason for some of Jimmy's frustration. He says that I just don't listen. Sorry honey!
Anyway, I feel like I learned a lot about my son in the last hour. And, I am even more proud of him!
He was not quite so cooperative this time. He didn't even want me to do the tasks with him (i.e. supporting his waist to stand him up to get a toy). A big part of the problem was that the session began right before nap time. Not ideal at all! I talked about this with the therapist ahead of time, but we had no choice this week so we went for it. The therapist asked if she could hold him and if he would let her, in an attempt to build rapport with him. I told her that he would not, but that she could take him into his room or play room and that I would stay in the kitchen. It took him a few minutes to stop crying (screaming) but then I would hear silence. Music to my ears because I would love for him to be a little more comfortable with people he doesn't see all of the time. Then I would hear screaming again.. This went on for a good 20-25 minutes.
As soon as I heard, "let's go find Mommy. We're all done." I peeked around the corner to find her holding him and tears streaming down his face. He reached for me and once he realized that we weren't going to "work" anymore, he calmed down.
Melissa gave me some recommendations and positive feedback. He seems to be walking better (with assistance) this week compared to last week. She said that he has great toys to play with and that we should try to raise them a bit (particularly in his room) because he can easily crawl and sit to play with all of his toys. She commented on the number of toys he has and said that she doesn't have to bring her toys with her to our sessions *sigh* (I know this...). We have such generous family members and friends who buy and pass along their kids' toys to Landon! But, what she said next really struck me. She said, "I can tell that Landon has been through a lot, but he has really great coping skills for as young as he is." Now, I have worried about Landon's anxiety and coping in the past so it felt good to hear this. I asked her why she said that so she told me that even when Landon gets upset, he maintains his composure and then after a few minutes he just decides to deal with it. She said, at no point, did he seem comfortable with the fact that she was there and I wasn't, but he went along with what she was doing. He became upset when she tried to get him to walk and stand probably because he was tired and not in the mood. She also said that he is a thinker. He likes to figure things out and really concentrates on the task at hand. That is definitely Jimmy! What I noticed about him, which is a lot like me, is that he will continue to try to make something work even when we redirect him to do it the "correct" way. It's almost as if to say, "I need to find out for myself that it doesn't work." This has been reason for some of Jimmy's frustration. He says that I just don't listen. Sorry honey!
Anyway, I feel like I learned a lot about my son in the last hour. And, I am even more proud of him!
Tuesday, October 11, 2011
Little Setbacks
Today Landon had his 18 month check up. I was very anxious about it. He hasn't been weighed in a whole month and is eating now and I knew that if he didn't gain much weight, that I would be pretty upset. Everyone kept saying that it seems like he is bigger. I talked myself into that, but I admit that I wasn't surprised to hear that he only gained 3oz in a month. His 12 months clothes are still a little bit on him. I can see that there's no difference, but I wanted to! So, a 3oz gain for most 18 month olds (in one month) is pretty good, but Landon still has catching up to do. After leaving the office and thinking, I thought about the fact that I haven't been quite as consistent about him getting each and every feed. If we have something going on, I haven't been too concerned about him missing a feed. I increased his night time amount a little bit, and he is eating some now so I thought that it wasn't a big deal. I learned my lesson. In addition to sticking with his regular feeding schedule (no matter what the day is like), his pediatrician also suggested that I add another ounce or so of formula to each feed. She thinks that the fact that he is becoming more active might have something to do with it too. He needs more calories.
So, I have to say that I was pretty upset. I mentioned in another post that I seem to have a difficult time with even the smallest setbacks when he is doing well. I felt it again today. So, I was standing in the kitchen feeling pretty crappy and Landon began to cry. I told him that I cannot pick him up because I was preparing his meds and feed. He gets a big smile on his face and does the sign for "eat." Wow, Landon sure knows his mommy well! He knew just what I needed! I just love that little boy. I felt better after that.
So, I have to say that I was pretty upset. I mentioned in another post that I seem to have a difficult time with even the smallest setbacks when he is doing well. I felt it again today. So, I was standing in the kitchen feeling pretty crappy and Landon began to cry. I told him that I cannot pick him up because I was preparing his meds and feed. He gets a big smile on his face and does the sign for "eat." Wow, Landon sure knows his mommy well! He knew just what I needed! I just love that little boy. I felt better after that.
Wednesday, October 5, 2011
Baby Blues
Landon's beautiful blue eyes are healthy, strong and free of cystine crystals right now!! Jimmy went to the appointment, prepared to hear that some crystals have developed and nothing! That's our motto: Prepare for the worst and hope for the best! At some point we will get the news that there are crystals and that he will have to begin using eye drops, but for now, not so much.
We will go back in 6 months or sooner if we start to notice him rubbing his eyes a lot, light sensitivity or see that his corneas appear to be hazy.
Thank you for all of the thoughts and prayers!
We will go back in 6 months or sooner if we start to notice him rubbing his eyes a lot, light sensitivity or see that his corneas appear to be hazy.
Thank you for all of the thoughts and prayers!
Tuesday, October 4, 2011
Proud Mama
What makes me the proudest and happiest mommy in the world?
1. We met Landon's physical therapist today. She said that he is doing so well and that he really is not behind in walking. She said that she wouldn't be surprised if he is walking by the next time she comes to our house which is next week! Of course, we are betting on it but it's nice to know that he really is close!
2. We also met Landon's occupational therapist. We are going to work on feeding issues with her. She also said, "I don't think you are going to need me for very long!" She observed him eating (goldfish, cheerios and a slice of cheese). Over the past couple of weeks, he has been open and exciting about eating! He tries whatever we put on his plate. The problem is that he often holds food in the side of his mouth, and of course, that he isn't yet consuming enough calories to wean off of the feeds. She said that she thinks that it's a matter of learning to use and manipulate his tongue. If food gets to the side of his mouth, she thinks that he doesn't know how to move it with his tongue so he just leaves it there. Once we help him with this but stimulating his tongue with different exercises, he should eat much more efficiently. She said that the fact that he is interested and attempting is a huge step and that we shouldn't have much more work to do from there.
3. Landon sat in a high chair at a restaurant and actually ate food (mac n cheese and french fries) and at an ice cream cone for dessert!! And he really seems like he is enjoying food and eating.
4. Landon has not thrown up in about two weeks now! He is pooping, thanks to the help of an over-the-counter powder and I think him not going to the bathroom was a big reason why he was vomiting.
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For those who have known Landon's story since he was 7 months- not eating, not going to the bathroom, vomiting- you can understand how happy this all makes us! It has been a long time since this was all normal. It has been a struggle for much of Landon's life so this is a BIG deal!
Tomorrow, Jimmy and I are taking Landon to see the opthamologist. I was feeling pretty anxious about this appointment. They are checking to see if cystine crystals have developed in his eyes yet. If they have developed, we may have to start putting eye drops in his eyes. They may wait until we notice that he is experiencing discomfort (light sensitivity, rubbing his eyes etc). Either way, his eyes will be affected at some point so it almost feels like a waiting game. Eye drops may not seem like a big deal, but at some point, he will need eye drops 8-12 times a day. I don't know if it will start off that often but it will come to that. It's just a matter of time. Landon's nephrologist recently told us about a guy with Cystinosis who was entering into law school (so probably in his twenties). He was consistent about putting eye drops in his eyes every waking hour (he set an alarm on his cell phone), and experienced no pain or light sensitivity. Then she told us about a teenage boy who walks in clinic every few months with dark glasses and a hat because his eyes hurt and are so sensitive to light. He has chosen not to use the eye drops. So needless to say, these eye drops will be VERY important. There is research being conducted so hopefully (fingers crossed) it will become easier and less time time consuming, but until then, that's what we have to look forward to.
Anyway, I was experiencing some anxiety about this appointment and fear that we are at a point where there is something else to worry about. But, I am at peace with whatever the outcome may be. If we have to begin drops, then that's what we do! So, wish us luck tomorrow and I promise to update!
1. We met Landon's physical therapist today. She said that he is doing so well and that he really is not behind in walking. She said that she wouldn't be surprised if he is walking by the next time she comes to our house which is next week! Of course, we are betting on it but it's nice to know that he really is close!
2. We also met Landon's occupational therapist. We are going to work on feeding issues with her. She also said, "I don't think you are going to need me for very long!" She observed him eating (goldfish, cheerios and a slice of cheese). Over the past couple of weeks, he has been open and exciting about eating! He tries whatever we put on his plate. The problem is that he often holds food in the side of his mouth, and of course, that he isn't yet consuming enough calories to wean off of the feeds. She said that she thinks that it's a matter of learning to use and manipulate his tongue. If food gets to the side of his mouth, she thinks that he doesn't know how to move it with his tongue so he just leaves it there. Once we help him with this but stimulating his tongue with different exercises, he should eat much more efficiently. She said that the fact that he is interested and attempting is a huge step and that we shouldn't have much more work to do from there.
3. Landon sat in a high chair at a restaurant and actually ate food (mac n cheese and french fries) and at an ice cream cone for dessert!! And he really seems like he is enjoying food and eating.
4. Landon has not thrown up in about two weeks now! He is pooping, thanks to the help of an over-the-counter powder and I think him not going to the bathroom was a big reason why he was vomiting.
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For those who have known Landon's story since he was 7 months- not eating, not going to the bathroom, vomiting- you can understand how happy this all makes us! It has been a long time since this was all normal. It has been a struggle for much of Landon's life so this is a BIG deal!
Tomorrow, Jimmy and I are taking Landon to see the opthamologist. I was feeling pretty anxious about this appointment. They are checking to see if cystine crystals have developed in his eyes yet. If they have developed, we may have to start putting eye drops in his eyes. They may wait until we notice that he is experiencing discomfort (light sensitivity, rubbing his eyes etc). Either way, his eyes will be affected at some point so it almost feels like a waiting game. Eye drops may not seem like a big deal, but at some point, he will need eye drops 8-12 times a day. I don't know if it will start off that often but it will come to that. It's just a matter of time. Landon's nephrologist recently told us about a guy with Cystinosis who was entering into law school (so probably in his twenties). He was consistent about putting eye drops in his eyes every waking hour (he set an alarm on his cell phone), and experienced no pain or light sensitivity. Then she told us about a teenage boy who walks in clinic every few months with dark glasses and a hat because his eyes hurt and are so sensitive to light. He has chosen not to use the eye drops. So needless to say, these eye drops will be VERY important. There is research being conducted so hopefully (fingers crossed) it will become easier and less time time consuming, but until then, that's what we have to look forward to.
Anyway, I was experiencing some anxiety about this appointment and fear that we are at a point where there is something else to worry about. But, I am at peace with whatever the outcome may be. If we have to begin drops, then that's what we do! So, wish us luck tomorrow and I promise to update!
Thursday, September 29, 2011
This week was dedicated to doctor's visits for Mommy although I had to cancel my dentist appointment because I was pretty sick yesterday. Thankfully it was short lived and I feel back to normal today. Anyway, I did up end in the same waiting room and exam room as I got used to being at when I was pregnant with Landon. The last time I was there was 6 weeks following Landon's birth. And let me tell you, it was so depressing to sit there and know that there was not a baby growing in my belly. Our "plan" was that we would try to give Landon a baby brother or sister by the time he was 2 years old which would mean that I anticipated walking into that waiting room again feeling nauseous and excited to go through the next 9 months again despite morning sickness and heartburn. What I remember clearly is placing my hand on the top of my belly and rubbing it, or feeling those kicks that always were a pleasant surprise and made me smile. There were parts that were not so fun about being pregnant, but there were plenty that were awesome and especially the end result. It breaks my heart to think that it might not happen again.
What also breaks my heart is to think that Landon might grow up not having a sibling. I know that there are many many many perfectly happy only children in this world and lots who prefer it that way. And I know that Landon will have cousins and best friends with whom he will have a very special relationship. But, I have an incredible relationship with my sister and Jimmy has the same kind of relationship with his brother and sister. And, we are close to each other's siblings and their spouses. Yes, we are all just one big happy family! Corny, but true. My sister knows me and understands me in a way that no one else ever could (same with Jimmy's siblings). And someday Jimmy and I won't be here, and I want to know that Landon has "that person." You may be thinking, well just because two people are siblings doesn't mean they are close or that they will take care of each other. Thank you my devil's advocate friends. =0)
On that note, I have prayed since I was pregnant with Landon, that Jimmy and I would be the best parents to him that we can be and that we would always make the right decisions for him. Ironically, I never remember praying to have a healthy child. Either God was preparing me for this or I took for granted that I would have a healthy child (maybe a little of both!). But, I just have to trust that Jimmy and I will make the right decision in choosing whether or not to have another baby in the future. We have a 1 in 4 chance of having a child with Cystinosis. I can tell you one thing, if we do choose to get pregnant and have another child, the moment we find out that I am pregnant will be the scariest and one of the most exciting moments of my life. I often look at Landon and how beautiful, smart and incredible he is and I think, who cares if we have another with Cystinosis. As Jimmy said, "I wouldn't trade Landon for 50 healthy kids." But, I'm not living in Landon's body.
I honestly did not mean to go into such detail about all of this. This has been a discussion between Jimmy and I since Landon was diagnosed. But, I guess it's really no secret. People ask us often if we plan to have more or not, because of what's going on with Landon. And for anyone who might be interested, they can perform an amniocentesis between 10-12 weeks of pregnancy to determine if the baby has Cystinosis. So, we could find out very early. We would do this, not to terminate, but just to know...
Okay, so on a happy, positive note- not that this post has necessarily been negative.. BUT, my mom and I ventured into the mall today without a stroller and Landon, first in my arms. We had to keep handing him back and forth because he was getting too heavy to carry! And, he has consistently been eating this week. He really seems interested in food and is enjoying it! He loves goldfish crackers and today he had some vanilla ice cream and macaroni and cheese. He regularly says new words but it is very random and not necessarily predictable. But, he talks so much and so loud, and I swear to you, it now sounds less like babbling and as if he is speaking in some other language. It is so funny to hear him. He consistently says Hi and bye. He said dada and mama very clearly and with purpose. He blows kisses, gives high fives, low fives and pounds. He says "me" when he wants something. Ohh- he is just so much fun! No wonder I want another one!
What also breaks my heart is to think that Landon might grow up not having a sibling. I know that there are many many many perfectly happy only children in this world and lots who prefer it that way. And I know that Landon will have cousins and best friends with whom he will have a very special relationship. But, I have an incredible relationship with my sister and Jimmy has the same kind of relationship with his brother and sister. And, we are close to each other's siblings and their spouses. Yes, we are all just one big happy family! Corny, but true. My sister knows me and understands me in a way that no one else ever could (same with Jimmy's siblings). And someday Jimmy and I won't be here, and I want to know that Landon has "that person." You may be thinking, well just because two people are siblings doesn't mean they are close or that they will take care of each other. Thank you my devil's advocate friends. =0)
On that note, I have prayed since I was pregnant with Landon, that Jimmy and I would be the best parents to him that we can be and that we would always make the right decisions for him. Ironically, I never remember praying to have a healthy child. Either God was preparing me for this or I took for granted that I would have a healthy child (maybe a little of both!). But, I just have to trust that Jimmy and I will make the right decision in choosing whether or not to have another baby in the future. We have a 1 in 4 chance of having a child with Cystinosis. I can tell you one thing, if we do choose to get pregnant and have another child, the moment we find out that I am pregnant will be the scariest and one of the most exciting moments of my life. I often look at Landon and how beautiful, smart and incredible he is and I think, who cares if we have another with Cystinosis. As Jimmy said, "I wouldn't trade Landon for 50 healthy kids." But, I'm not living in Landon's body.
I honestly did not mean to go into such detail about all of this. This has been a discussion between Jimmy and I since Landon was diagnosed. But, I guess it's really no secret. People ask us often if we plan to have more or not, because of what's going on with Landon. And for anyone who might be interested, they can perform an amniocentesis between 10-12 weeks of pregnancy to determine if the baby has Cystinosis. So, we could find out very early. We would do this, not to terminate, but just to know...
Okay, so on a happy, positive note- not that this post has necessarily been negative.. BUT, my mom and I ventured into the mall today without a stroller and Landon, first in my arms. We had to keep handing him back and forth because he was getting too heavy to carry! And, he has consistently been eating this week. He really seems interested in food and is enjoying it! He loves goldfish crackers and today he had some vanilla ice cream and macaroni and cheese. He regularly says new words but it is very random and not necessarily predictable. But, he talks so much and so loud, and I swear to you, it now sounds less like babbling and as if he is speaking in some other language. It is so funny to hear him. He consistently says Hi and bye. He said dada and mama very clearly and with purpose. He blows kisses, gives high fives, low fives and pounds. He says "me" when he wants something. Ohh- he is just so much fun! No wonder I want another one!
Sunday, September 25, 2011
Landon's World
It is Landon's world and Jimmy and I are just living in it! My sweet little angel boy has become quite a little character! He wants what he wants when he wants it! I actually attempted time out with him a couple of days ago. I never expected to give my almost 18 month old a time out, but redirection and saying "No" was just not cutting it. Landon has gone from being BFFs with our dog Rocky (not necessarily by Rocky's choice) to victimizing him! Rocky was chewing on his bone the other day and Landon repeatedly (despite my attempts to redirect and tell him "No") tried to take the bone from him. When Rocky wouldn't give it up, Landon proceeded to hit him. When I removed him from where Rocky was and said, "Landon, do not hit the doggie," he hit me. So, I sat him on his Elmo chair and told him that he has to sit because he was not nice to Mommy and to Rocky. He may not understand time out, but he did know that it was not good that he was made to sit in his chair. He tried to hit me again and pulled out a pretty serious puppy dog lip (he has perfected this one!).
And let me tell you, I dread the cold weather coming because this little boy is very persistent about going outside to play. What will I do if he is not walking and wants to crawl around in the snow? Ohh noo, please Landon start walking before the snow comes!
I have to admit that I smirk as I type this... I LOVE that Landon has some fire in him now and doesn't just go along with whatever we say or do.. He has an opinion and he is learning to voice that opinion. And on my, is he dramatic when he voices it. He throws his head back, flaps his little arms and gives that puppy dog lip. It takes everything out of me not to laugh hysterically! Which reminds me, he had his first big boo boo last week. I left the kitchen (where he was playing with his magnets) to put the vacuum away. As I walked back in, I witness him falling forward onto the ground. He bit his lip which results in a good bit of blood. I felt terrible! I rushed to comfort him and grabbed a wet rag. My attempts to wipe the blood from his mouth resulted in a very angry and hurt Landon throwing the wash cloth! After throwing it several times, he told me off in a way that I've never been told off before. Holy cow! He did not care about my apologies or attempts to comfort him. He was mad and he wanted me to know..
We have quite a little firecracker on our hands! I love it, but I just hope that I can keep up!
And let me tell you, I dread the cold weather coming because this little boy is very persistent about going outside to play. What will I do if he is not walking and wants to crawl around in the snow? Ohh noo, please Landon start walking before the snow comes!
I have to admit that I smirk as I type this... I LOVE that Landon has some fire in him now and doesn't just go along with whatever we say or do.. He has an opinion and he is learning to voice that opinion. And on my, is he dramatic when he voices it. He throws his head back, flaps his little arms and gives that puppy dog lip. It takes everything out of me not to laugh hysterically! Which reminds me, he had his first big boo boo last week. I left the kitchen (where he was playing with his magnets) to put the vacuum away. As I walked back in, I witness him falling forward onto the ground. He bit his lip which results in a good bit of blood. I felt terrible! I rushed to comfort him and grabbed a wet rag. My attempts to wipe the blood from his mouth resulted in a very angry and hurt Landon throwing the wash cloth! After throwing it several times, he told me off in a way that I've never been told off before. Holy cow! He did not care about my apologies or attempts to comfort him. He was mad and he wanted me to know..
We have quite a little firecracker on our hands! I love it, but I just hope that I can keep up!
Wednesday, September 21, 2011
Take the good with the not so good..
Well, the wedding was wonderful! Everyone had a blast, Jamie was a stunning bride and Jason made a very handsome groom!! Landon kept his formula in his belly! He even stayed at the reception until about 10:30pm, incredible. I knew when I began to carry him around like I did when he was a newborn, rather than the wild little toddler that he is now, that it was time for bed. He actually slept in the pack n play too which was pretty unbelieveable to me. I just have to give this little boy more credit than I do!
More exciting news is that Landon started "school" this week. We planned to enroll him in a pre-school program next fall, after he turns two years old. But, we heard about a Mommy and Me program just a few minutes away from us and after much debate, decided to go for it! So, every Tuesday, Landon and I will attend pre-school from 9am-11am. It's wonderful!! I think that he is going to learn so much-education and socially! The teacher seems wonderful and it is a small class of just 6 which includes two of the little guys in our neighborhood. I'm always concerned that I don't know just what Landon is capable of right now. I'm familiar with ages 3 and older, just through my previous work experience but this is a strange age for me. I want to encourage and challenge him, but not to the point of pushing him to do something that he's just not developmentally ready for yet. So, this is perfect! He really seemed to enjoy it. He actually nibbled on a cracker at snack time which was awesome since he had been refusing anything over the past few weeks. He colored on a piece of paper that will be turned into a fall leaf (so cute!), he participated in singing and dancing (with help from Mommy of course) and listened to a story.
I will also mention that Landon actually has been eating! It's certainly not enough to cut back on his feeds (don't worry, I learned!)but we are thrilled! I don't know what changed but I won't question it.
So yes, there is lots of good news but I do find that I have an extra hard time dealing with the little setbacks we have when things are going so well. For example, last night, Landon fell alseep at bed time only to wake up crying about an hour later. I let him cry for a few minutes and then went in to check on him. He quickly got himself worked up because I wouldn't pick him up and began screaming. Screaming is pretty much always followed by vomiting. So yes, he threw up. I immediately felt my eyes tear up and became so frustrated. Luckily Jimmy was in the othe room so helped me by cleaning Landon up while I changed the sheets. This is a fairly regular occurance lately with Landon and usually I quickly change the sheets and him in the blink of an eye and move on. No big deal, right? He got upset and that's what happens when he cries hard. But last night, it didn't feel like a big deal. And again, I know it's because when things are good; I want them to stay good! Sometimes I just need a kick in the butt to remind myself that little things like that are going to happen and it can't replace all of the wonderful things. That's why I blog!
More exciting news is that Landon started "school" this week. We planned to enroll him in a pre-school program next fall, after he turns two years old. But, we heard about a Mommy and Me program just a few minutes away from us and after much debate, decided to go for it! So, every Tuesday, Landon and I will attend pre-school from 9am-11am. It's wonderful!! I think that he is going to learn so much-education and socially! The teacher seems wonderful and it is a small class of just 6 which includes two of the little guys in our neighborhood. I'm always concerned that I don't know just what Landon is capable of right now. I'm familiar with ages 3 and older, just through my previous work experience but this is a strange age for me. I want to encourage and challenge him, but not to the point of pushing him to do something that he's just not developmentally ready for yet. So, this is perfect! He really seemed to enjoy it. He actually nibbled on a cracker at snack time which was awesome since he had been refusing anything over the past few weeks. He colored on a piece of paper that will be turned into a fall leaf (so cute!), he participated in singing and dancing (with help from Mommy of course) and listened to a story.
I will also mention that Landon actually has been eating! It's certainly not enough to cut back on his feeds (don't worry, I learned!)but we are thrilled! I don't know what changed but I won't question it.
So yes, there is lots of good news but I do find that I have an extra hard time dealing with the little setbacks we have when things are going so well. For example, last night, Landon fell alseep at bed time only to wake up crying about an hour later. I let him cry for a few minutes and then went in to check on him. He quickly got himself worked up because I wouldn't pick him up and began screaming. Screaming is pretty much always followed by vomiting. So yes, he threw up. I immediately felt my eyes tear up and became so frustrated. Luckily Jimmy was in the othe room so helped me by cleaning Landon up while I changed the sheets. This is a fairly regular occurance lately with Landon and usually I quickly change the sheets and him in the blink of an eye and move on. No big deal, right? He got upset and that's what happens when he cries hard. But last night, it didn't feel like a big deal. And again, I know it's because when things are good; I want them to stay good! Sometimes I just need a kick in the butt to remind myself that little things like that are going to happen and it can't replace all of the wonderful things. That's why I blog!
Thursday, September 15, 2011
Here Comes the Bride, Groom and Landon...
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!!!
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!!!
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!
Wednesday, August 10, 2011
Fundraising
I am very excited! We are working to plan our first big fundraising event- a Halloween party! We don't have much time so I have spent Landon's nap making calls and researching. It will probably be held on a Friday evening in October. An announcement will go out as soon as we have a place and date. If you, or someone you know, is able to donate or give a discount on things that we will need such as catering, dj, baskets to raffle etc.. Please let me know by e-mail at LaurenLHartz@gmail.com, by phone or on Facebook.
The Cystinosis Cause Bracelets were a big hit! If you are interested in purchasing one, $5 of the proceeds will be donated to the Cystinosis Research Foundation. You can find them at www.cathyscreationsjewelry.com. The bracelet is named after Landon.
A group of kids on our street had a lemonade stand and donated all of their proceeds to Landon. I had to hold back tears when they approached us at the park and gave us the money!!
Other friends and family members have been doing their own work to organize events and fundraisers. It is unbelieveable how much support we have! I feel like we are approached with one awesome idea or another- some we don't even know are happening until it's over. I cannot tell you how much we appreciate all of this and how we blessed we feel to have all of you in our lives!
The Cystinosis Cause Bracelets were a big hit! If you are interested in purchasing one, $5 of the proceeds will be donated to the Cystinosis Research Foundation. You can find them at www.cathyscreationsjewelry.com. The bracelet is named after Landon.
A group of kids on our street had a lemonade stand and donated all of their proceeds to Landon. I had to hold back tears when they approached us at the park and gave us the money!!
Other friends and family members have been doing their own work to organize events and fundraisers. It is unbelieveable how much support we have! I feel like we are approached with one awesome idea or another- some we don't even know are happening until it's over. I cannot tell you how much we appreciate all of this and how we blessed we feel to have all of you in our lives!
I Had a Dream...
It has been quite an eventful few days.. Over the weekend, following a screaming fit when I tried to connect Landon to the feeding tube overnight, I made an executive decision to not give him feeds and to see if he would get hungry and actually eat. This wasn't a psychotic break for me, I promise! I have been concerned that Landon is losing his oral skills- ones that never really developed anyway because he never had good practice eating. There has been talk with the doctors of beginning to wean him, but we haven't gotten that far yet. Anyway, with his kidney doctor's blessing, I did not give him a feed all day Saturday, Sunday and Monday. I knew that he wasn't taking in enough calories to gain weight but I really wanted to get a good idea of what he would do if the feeding tube wasn't there. I'm happy to say that he did begin eating a little better! But again, certainly not enough to grow. I learned yesterday, that he actually lost 5oz in the past two weeks (probably just over the weekend). Boo for weight loss! So, in talking with his pediatrician, we discussed a plan that will eventually result in weaning him but will do it slowly. I told Jimmy, "my intention was not to get rid of the feeding tube." His response was, "yes it was." Okay, okay.. my husband knows that sometimes I am endlessly optimistic and hopeful. He also knows that I don't believe a thing that anyone says until I see it for myself. In my dream, Landon would have become hungry, tried some food and realized that this is a wonderful thing. So he would have started eating and all would have been right in our world. I know, I know... So, we are back on getting bolus feeds every 3 hours during the day and a continuous feed at night. But hopefully will make some changes in the next few weeks. But, we are going to be consistent in putting him in his high chair and giving him something small to eat before hooking up his feeding tube. We also are going to begin meeting with a feeding team again to work on skills that will help him to chew and swallow more efficiently. I was thrilled to make the two of us pancakes the other morning. I ate my pancakes and Landon made a funny face, gagged and spit them back out. Oh well, I guess I am the only one in the family who really likes pancakes!
Friday, August 5, 2011
Lesson Learned from Barney (seriously!)...
Landon loves Barney. Sesame Street is okay (particularly Elmo) and Bob the Builder is pretty cool, but Barney- that's where it's at for Landon! He smiles, dances and does this "chicken dance" like motion with his hands when the characters sing and dance. I actually don't mind Barney although I will admit I prefer older Barney over the new one. Anyway, there is one episode on On Demand about Feelings. Apprarently the creators of Barney zoned in on the social and emotional learning movement (which makes me very happy!). So in the episode, Barney and friends talk about feelings, particularly happy, sad and mad. Now we all know the importance of teaching children that all feelings are okay (it's the way you handle those feelings that is important). So Barney reinforces this but adds that we should feel happy most of the time. Simple enough, right? Well, this mommy needed a bit of a reminder.
So here's my confession... I am pretty optimistic (as much as a parent whose child was diagnosed with something life changing can be). Jimmy is as well and I feel like we are handling this whole business pretty well... But, I have had a rough time over the past week (on and off). I've cried more in the past few days than I have since he came home from the hospital. I've been sad more often and I've been made more often.. Many of you will be surprised by this because I am pretty good at staying in my thoughts when I don't want to be emotional(it's a therapy technique that I've learned.. it's basically what I strive to get my clients to stop doing- I'm honest, right?). My tears are usually for me. Jimmy catches it more than anyone and others have caught it, but for the most part, the lack of emotion regulation happens when it is just me, myself and I. I am aware of the reasons that I have felt more emotional lately. I believe it's a combination of learning that my son has some anxiety, seeing him experience some not so fun things (belly aches, pretty bad diaper rash, diarrhea, vomitting). I'm sad that he is so dependent on the feeding tube right now. I mentioned in my Cystinosis group that I have a love/hate relationship with the feeding tube. It's the reason why he is plumping up, but I can't even tell you what I would give to see my son sit and actually eat regular food. My hope is that we can begin to wean him a little in the next couple of weeks (successfully!).
So, you ask (of course you didn't forget during my rant)- what lesson did she learn from Barney? Well, it's okay for me to feel sad and mad and cry. And it is okay for Landon to get upset and cry when someone tries to hold him and to exhibit some anxiety when we a nurse tries to weigh him or the phlebotemist (sp?) takes blood from him. Why? Because most of our time is spent happy (or at least content). And we have a period of time, every day, in which we laugh or have a huge smile on our faces. Today we walked around the Waterfront (with my mom, my aunt and my sister). Landon had the most adorable hat on and we walked past a live band. All of a sudden, I feel Landon bobbing around in my arms. He just can't contain himself when he hears music. And, he had a huge smile on his face. So yes, maybe at one point today both he and I were crying. But, that was just for a couple of minutes. The rest of the day was full of smiles.
So here's my confession... I am pretty optimistic (as much as a parent whose child was diagnosed with something life changing can be). Jimmy is as well and I feel like we are handling this whole business pretty well... But, I have had a rough time over the past week (on and off). I've cried more in the past few days than I have since he came home from the hospital. I've been sad more often and I've been made more often.. Many of you will be surprised by this because I am pretty good at staying in my thoughts when I don't want to be emotional(it's a therapy technique that I've learned.. it's basically what I strive to get my clients to stop doing- I'm honest, right?). My tears are usually for me. Jimmy catches it more than anyone and others have caught it, but for the most part, the lack of emotion regulation happens when it is just me, myself and I. I am aware of the reasons that I have felt more emotional lately. I believe it's a combination of learning that my son has some anxiety, seeing him experience some not so fun things (belly aches, pretty bad diaper rash, diarrhea, vomitting). I'm sad that he is so dependent on the feeding tube right now. I mentioned in my Cystinosis group that I have a love/hate relationship with the feeding tube. It's the reason why he is plumping up, but I can't even tell you what I would give to see my son sit and actually eat regular food. My hope is that we can begin to wean him a little in the next couple of weeks (successfully!).
So, you ask (of course you didn't forget during my rant)- what lesson did she learn from Barney? Well, it's okay for me to feel sad and mad and cry. And it is okay for Landon to get upset and cry when someone tries to hold him and to exhibit some anxiety when we a nurse tries to weigh him or the phlebotemist (sp?) takes blood from him. Why? Because most of our time is spent happy (or at least content). And we have a period of time, every day, in which we laugh or have a huge smile on our faces. Today we walked around the Waterfront (with my mom, my aunt and my sister). Landon had the most adorable hat on and we walked past a live band. All of a sudden, I feel Landon bobbing around in my arms. He just can't contain himself when he hears music. And, he had a huge smile on his face. So yes, maybe at one point today both he and I were crying. But, that was just for a couple of minutes. The rest of the day was full of smiles.
Thursday, August 4, 2011
Reaching Out!
As you all know, at some point in Landon's life, he will need a kidney transplant. Our hope is that he can make it through high school without needing one but there are no guarantees.
Well, there is a 9 year old girl who lives only minutes away from us. This is so crazy considering that there are only about 500 people in the United States with this disease. Anyway, Dillon also has Cystinosis and was diagnosed around the age of 2. Well, the doctors have been concerned about some of her levels so have been keeping a close eye on them. They decided to test Dillon's parents to see if either of them are a match and can donate a kidney when the time comes. At first, they thought that Dillon's mom was a match and then recently learned that she is not. Dillon's dad is not a match either. One of the first things that we were told, in discussing the transplant process with the doctors, was the usually a parent is a match. Unfortunately, that is not the case in their situation. So, Dillon will soon begin dialysis until a match is found.
I cannot tell you much about the process at this point, but Jimmy and I talked before and will talk to Landon's nephrologist about determining if we are a match for Landon and if one, or both of us are not, then we want to get tested to see if we are a match for Dillon.
Dillon's family is reaching out to their community to see if people are willing to be tested. I, in turn, wanted to reach out to our incredible network. If you are interested in learning about the process and what it entails, please contact me at LaurenLHartz@gmail.com, Facebook or by phone and I can put you in touch with Dillon's parents. It is a big request but someone out there has what it will take to save a little girl's life.
Well, there is a 9 year old girl who lives only minutes away from us. This is so crazy considering that there are only about 500 people in the United States with this disease. Anyway, Dillon also has Cystinosis and was diagnosed around the age of 2. Well, the doctors have been concerned about some of her levels so have been keeping a close eye on them. They decided to test Dillon's parents to see if either of them are a match and can donate a kidney when the time comes. At first, they thought that Dillon's mom was a match and then recently learned that she is not. Dillon's dad is not a match either. One of the first things that we were told, in discussing the transplant process with the doctors, was the usually a parent is a match. Unfortunately, that is not the case in their situation. So, Dillon will soon begin dialysis until a match is found.
I cannot tell you much about the process at this point, but Jimmy and I talked before and will talk to Landon's nephrologist about determining if we are a match for Landon and if one, or both of us are not, then we want to get tested to see if we are a match for Dillon.
Dillon's family is reaching out to their community to see if people are willing to be tested. I, in turn, wanted to reach out to our incredible network. If you are interested in learning about the process and what it entails, please contact me at LaurenLHartz@gmail.com, Facebook or by phone and I can put you in touch with Dillon's parents. It is a big request but someone out there has what it will take to save a little girl's life.
The past few days have been pretty uneventful for the most part. Thank goodness, right?! It seems like Landon is really on a good and solid routine. Bed time at 8:00pm, wake between 6:30am-8:00am and a nap from 11:00am until about 1:30pm. A schedule has been my hope from day 1 but I could never get there!
We have had several play dates since last week which has been awesome!! I joined a Mommy Group quite some time ago but between work (even part time) and doctors appointments, I just couldn't get to any activities. But, we got a taste of one play group last week and a get together at a coffee shop for some time to chat with other mommies and it has been great! Plus, we got together with some great friends and their adorable kiddos over the weekend and had a blast! Jimmy and I have realized, through these play sessions, how cautious and shy Landon is (or has become). He becomes pretty clingy and seems pretty anxious when we take him some place that he's not totally familiar with and with people he doesn't know well. He also seems to get worked up even around people he is familiar with. Now, sometimes it seems that he's tired but not always. He cries if someone takes him from me and it seems that he can't crawl fast enough to get to me at times. Now is it the age and stage of development that he is in, a result of the hospital experience or just his temperment? We don't really know..
To go along with the above note, we had a session of physical therapy (PT) this week and Jimmy was able to come along because he had the day off (in preparation for his trip to Vegas with the guys!).. This was another situation in which we noticed the anxiety that Landon has at times. He got very upset when the therapist even so much as assisted him in standing up. Hopefully with a little bit of time, he will feel a little more comfortable in this setting. And during this session, only I could calm him down. I tried to walk out of the room at one point because he only wanted to crawl to me and climb in my lap and he had a total melt down. Poor kiddo! But, I will say that we both see the benefit in doing this weekly. Landon does pretty well working with Jimmy and I at home and certainly seems stronger and closer to walking. We still have some time but are definitely headed in the right direction. Our hope is that he will be walking by 18 months and it definitely seems feasible! If not, it's okay, he will walk when he is ready but it doesn't hurt to set goal, right? =0)
We have had several play dates since last week which has been awesome!! I joined a Mommy Group quite some time ago but between work (even part time) and doctors appointments, I just couldn't get to any activities. But, we got a taste of one play group last week and a get together at a coffee shop for some time to chat with other mommies and it has been great! Plus, we got together with some great friends and their adorable kiddos over the weekend and had a blast! Jimmy and I have realized, through these play sessions, how cautious and shy Landon is (or has become). He becomes pretty clingy and seems pretty anxious when we take him some place that he's not totally familiar with and with people he doesn't know well. He also seems to get worked up even around people he is familiar with. Now, sometimes it seems that he's tired but not always. He cries if someone takes him from me and it seems that he can't crawl fast enough to get to me at times. Now is it the age and stage of development that he is in, a result of the hospital experience or just his temperment? We don't really know..
To go along with the above note, we had a session of physical therapy (PT) this week and Jimmy was able to come along because he had the day off (in preparation for his trip to Vegas with the guys!).. This was another situation in which we noticed the anxiety that Landon has at times. He got very upset when the therapist even so much as assisted him in standing up. Hopefully with a little bit of time, he will feel a little more comfortable in this setting. And during this session, only I could calm him down. I tried to walk out of the room at one point because he only wanted to crawl to me and climb in my lap and he had a total melt down. Poor kiddo! But, I will say that we both see the benefit in doing this weekly. Landon does pretty well working with Jimmy and I at home and certainly seems stronger and closer to walking. We still have some time but are definitely headed in the right direction. Our hope is that he will be walking by 18 months and it definitely seems feasible! If not, it's okay, he will walk when he is ready but it doesn't hurt to set goal, right? =0)
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!
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