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!

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!

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.

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.

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)

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!

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!