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.
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