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.
Wednesday, August 24, 2011
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)
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