Challenges

Today was Landon's first day at a 3 day summer camp at a local gymnastics studio (Gymsport if you are local)... There was a deal on Living Social and my sister-in-law was signing my niece up for a camp. The class is for 3-6 year old children which made me a bit anxious because Landon is such a young 3 year old (physically, socially, verbally etc).. But, Jimmy suggested that we give it a try. Jimmy is a big advocate for exposing kids to those a little older so they can learn from them and be challenged a bit- I agree so we went for it. I knew that it was not going to go smoothly. His cousin, who he adores, is in the class but I knew that it probably wouldn't help all that much. Landon does or does not do whatever he wants and no one can change his mind. I know, I know.. if he stays that way I will be a very happy mother of a teenager, but sometimes now I would like for him to give into peer pressure (sometimes). We got there 40 minutes early (shame on mommy for not confirming the time before we left).. Anyway, I thought it may work to our advantage to let him check things out and talk to his coach for a little bit before he was asked to leave my side. When it was time to start, his teacher led the class onto the mat and asked Landon if he was ready. "Yes!," he said excitedly. He then turned to look at me, sitting down holding Jordan, and he freaked! Coach Dana took him and sat him on her lap and began the class. He cried and cried and cried despite the fact that I was about 15 feet away and he was facing me. After a few minutes, she let him go and he ran back to me. So I had to think.. how was I going to handle this one? The never ending question for parents, right? I told him that if he chose not to go with his teacher, that he needed to sit and watch and was not allowed to run around and play. It kind of backfired. Landon is a people watcher so certainly didn't mind sitting safely with me on the bench watching the other kids. His coach tried a couple more times to get him to come out and then told me that I could come out with him if I wanted. Luckily, my brother-in-law was there with my niece so he took over baby duty with Jordan. I started off by staying close by and encouraging him to participate, but again, he was perfectly happy to sit next to me and watch. So, with the okay from his coach, I "assisted" in getting my son to participate in the class. I watched as she picked him up, placed him on the balance beam let him walk across and then immediately put him on the bar for the next activity. At the next station the kids had an opportunity to go on the little zip line and fall into a pool of foam blocks, go down a sliding board into the foam blocks, jump on a trampoline among a few other activities. All Landon wanted to do was jump on the trampoline, but quickly got off or ran away if another child got near it. So, I picked him up and put him on the zip line (holding onto his hands as he held on and kept a hold of him as he went into the pool of foam blocks.. then picked him up and put him on the slide a few times each. There is such a fine line between respecting his personality/temperament and encouraging him to try things and take chances. His bone health is good now (we have scans to show that)... I am sympathetic that he may get tired more quickly than other kids and that he is behind in his gross motor skills. I keep an eye on how he is acting and responding to his environment, but I want to help him to build confidence and know that he is capable. I think I may try to sign him up for another camp or even a class at this gym. It will challenge him a bit and hopefully keep him on track for going back to preschool in the fall and going without me. He also can use the help with his gross motor skills. I think if we stick with this that it help build confidence in him. He is so cautious which is not a bad thing.. it will keep him safe and he probably will never be a kid that I have to worry all that much about as far as getting hurt, but being anxious and scared is a tough place to be. We're up for the challenge... Landon has amazed me in so many ways and has come such a long way. This is just another step...

Fundraiser Updates!

Below I included the link to a video that Jimmy and I (mostly Jimmy) created that includes pictures that our friend, Leah, took at the golf outing. http://animoto.com/play/E0g2gY92m7wXcwJg1zVDfw This event raised over $16,000 for the Cystinosis Research Foundation! I have to tell you all about another fundraiser that was done. My dad's cousin works in the special education department at a local high school. As part of the program, they have a cafe in which students can purchase drinks and snack items. Each month, they choose an organization to donate their proceeds to. For the month of May they chose to donate to the CRF in honor of Landon. They donated $2,000! Isn't that awesome?! In other news, a friend of ours, Amber, talked to us about the possibility of holding a motorcycle ride to raise money for the CRF as well. A family member of hers has done this before and expressed interest in organizing it when she heard about Landon. Incredible, incredible, incredible! People are so good and so kind. We are also beginning to think about the Halloween event. Mark your calendars for November 2nd. It will be held at the same location that we have had it the past 2 years- The Home Economics Building in South Park.

Fundraisers, Eating, Eyes Drops and probably more..

I will begin by saying that the 2nd Annual Lots of Love for Landon Golf Event was a success and we are so thankful to so many people. I will include more information when we have a final amount raised and pictures to share. It was great!! I was thinking today as I watched Landon sit at his picnic table in the back yard eating his lunch how proud I am of him, but also how sad I feel at times that as normal and healthy as he seems it is just a bit more complicated. I have posted a lot in the past about our struggles in getting him to eat. We so desperately wanted to sit at the table or go to a restaurant and for Landon to eat with us. And now he does! It was a nice day today so we played outside for a while and ate lunch at the picnic table. Landon sat with his plate in front of him including macaroni and cheese, lettuce with Ranch dressing and strawberries. He ate every bit of what was on his plate and finished it off with apple juice. This is not unusual for lunch and dinner, although like any other kid, he has great meals and some not so great. Yes, like any other kid. I feel like Landon eats as well now as his peers. He probably doesn't snack like many of his peers do because generally he has a good lunch and a good dinner. Breakfast is tough- he sometimes will have a few bites of scrambled eggs but generally he isn't interested in having breakfast. But it made me think, I wish that's all it took- to be just like the other kids, for him to not require the calories that he gets from 24oz of toddler formula. I still shoot that formula through a syringe, 2oz at a time, several times throughout the day. And today I thought- if I only gave him mac n cheese, it would have had more calories than the salad and strawberries. It's another struggle. Do I offer healthy feeds that don't contain a lot of calories in hopes that he will develop a healthy diet in which he eats a variety of food or do I not worry about that now and focus on getting the calories in him and getting him off the formula. My mama instinct tells me to get over the fact that we still need to give him this formula- yes, get over it, Lauren! It's more important that he eats, tries a variety of food and eats healthy foods with great nutritional value. On to the eye drops. It's getting easier. He is consistently getting them 3 times a day. Today I had to give them to his teddy bear, myself, daddy (when he came home) and then to Landon last. Daddy was told to choose a prize from the prize bag after he got his drops- not sure why this wasn't offered to myself or teddy. I have to work to open his eye to get the drops in and he screeches and then gets down when we are done, picks his prize and plays with it. He's not really even crying anymore- just squeezing his eyes shut and trying to hold onto my hand as I do it. I can't say I wouldn't do the same thing. You should see me at the eye doctor's office when they try to shoot that air into my eye for the glaucoma test (I think that's what they are testing?). Nothing in the world makes me more anxious (except getting my eye brows waxed)- okay I digress.. So that's about it... I will post a link to a video that Jimmy and I are working on that will display pictures taken at the golf event.

It's hard to title these posts anymore...

I think I always begin my posts but stating how busy we've been. So, I will not this time! (We are though!)... All is well, very well! This Friday is our 2nd annual Lots of Love for Landon golf outing organized by some pretty awesome uncles that Landon (and Jordan) have... I cannot say enough how awesome our families are! If they are not taking something like this head on, they are supporting us in making things happen! Every one of Landon's aunts, uncles and grandparents are involved in some way whether it be organizing, helping with support that day, watching the other kiddos so that moms and dads can give 100% to the event.. whatever.. they are there! We also have some pretty incredible friends who have insisted that they are helping without giving us opportunity to say "no, that's okay!" I will update about the event after it happens! Stay tuned! Landon is doing so well! We get little reminders every day that he is no longer our fragile baby but is a rambunctious little boy! His personality shines through more and more all the time. He's funny- very funny! He dances (and tells me "sing mommy, sing!- no buddy, you want me to dance, not sing!").. He tells stories which are hysterical because he is very animated and he still adds some mumble jumble in with key words. He likes to agitate, mostly me which he probably learned from his dad. He seems to be pretty athletic which makes me (and particularly his dad) excited. I am far from athletic so I hope my poor boys don't take after me! He throws and hits a ball well and can handle a soccer ball pretty well! I can't wait until he's older enough to participate in sports. We started giving him the eye drops. I have to say that the first day seemed a little too good to be true (it was!).. I decided to allow Landon to give me eye drops for a few days before I introduce his to him (we used general eye drops- not his). He enjoyed this and the first day, told me that he wanted to take a turn. I went with it and he laid on the couch giggling and kicking his feet and let me put eye drops in his eyes. He seemed a bit shocked after I did it, but kept a big grin on his face. Well, the next day, no go.. He did not want to take a turn. We had a few more days of him giving them to me without me expecting him to take his turn. But as of yesterday, he has to take his turn. Is it going well? As well as can be expected. He doesn't want to do it and he cries but we do it and then he picks a prize from the prize bag (yes, each time)... Tomorrow he has another day of getting a prize each time and then we will change it to getting a prize at the end of the day for getting drops. We need these prizes to last a bit! I thought it would be harder for me, especially since he puts up a fight. It's not though.. I prepare him that we are going to get drops in a couple minutes and that he will get to pick a prize. I pick him up when it's time, sit him on my lap, lean him back and do it. He kicks, he yells.. but it's just not an option. I don't make a big deal out of it and tell him when he is done that he can pick a prize as soon as he is ready. This usually stops the tears and he picks a prize and we play with it. I know it won't always be like this. He'll get used to it and frankly, he has no choice. For as long as I have control, he will do what he has to to be in the best health he can. Some things are inevitable- but we'll prolong them as long as we possibly can. I will never look back and say that I didn't do everything in my power to make him okay. I try hard not to make anything a fight because once I don't have control I want him to accept and be okay with what he has to do. I tell him that I know it's not fun to put drops in his eyes, and it hurts to get blood work etc.. but that it only takes a moment and then it's over. It is.. It sucks, but it's over. Easy for me to say, it's not me, but I hope that he develops a similar attitude. On another note- can I tell you how awesome it is to have these little boys- brothers? Jordan ADORES Landon and Landon is so good and really enjoys being looked up to! The other day, I was on the phone and heard them both laughing. Jordan was in his jumperoo. I went to check on them and Landon was squeezing Jordan's cheeks and they were both laughing. Too cute! I do have to remind Landon that he needs to be gentle with his brother. I don't want to rush time but I really look forward to the days that they can play together. So, that's all for now. I will update again soon!!

What makes it hard...

As I type this, Jimmy is on the phone with the specialty pharmacy that will send us the eye drops that Landon will begin taking. My guess is that we will start putting the eye drops in his eyes within the next week. It's real now. It's going to happen. It's not a thing of the future. Landon's nephrologist said that we can try and if it's a disaster then we let it go for a while and try again. I feel like this is just another thing that he has to do. It's just not an option. I am anxious about giving him the drops, but have been assured by many parents in the Cystinosis community that this is the least of the worries. I have to remind myself that I underestimate Landon, I always do. I am realizing that as he gets older, in many ways this all gets easier but in some ways much harder. Taking his medicine is just part of his routine. Once in a while he tells me "No" when I tell him that it's time for meds but its usually because I am interrupting his fun. He has been complaining that his belly is sore (the site where the G tube is placed). I have had several doctors look at it and they all say that it looks good. But sometimes it gets pulled or I think he sleeps on it and wakes up with it being sore from the way he was positioned. He has been complaining more lately so I changed it tonight (I will get back to this)... Anyway, he told me yesterday that "it hurted" and asked me to take it out. I told him that when he is bigger and can take put his medicine in his mouth, that we can take it out. It made me really sad though... So, as I said, tonight I decided to change his Mic Key button. He knows what to expect now and my sweet boy tries really hard to be brave. He told me that he wants to do it. He laid on the ground with a syringe in hand and put it exactly where he needed to. I let him help me use the syringe to pull the water out that fills up the balloon inside his belly (to hold it in place). He was okay with that. Then I pulled the Mic Key button out of his belly. He let out a cry. I tried to quickly place the new one in but that's easier said than done. I made a funny face and told him to hold his breath and puff out his cheeks. He laughed but that quickly turned to a panic and crying. We hugged and he cried for another minute and told me that it hurts, then he wiped the tears away and started watching television. He understands more and wants to participate in his care. This is a good thing.. He is more verbal now so can communicate what he is feeling.. also good.. He is learning coping skills. What makes it hard is hearing him say that he wants something to go away when I can't take it away.

The Threes!

I have mentioned this several times before but it runs through my mind often. Right before we left the hospital, Landon's nephrologist gave us the advice to not treat Landon as if he is a sick child because a sick child he will be. I think we have done a pretty good job of this although I have to admit that I hesitate about parenting decisions at times because I worry about how it relates to Cystinosis and how he feels or what he has gone through... But I also may hesitate simply because I am a mom and it's hard to put my foot down at times or know how to handle certain situations. Yes, maybe it's that and nothing to do with Cystinosis. Our evening today was a perfect representation of how one could struggle a bit in having a child with special needs. It's no secret that we have struggled with feeding issues with Landon for some time now. Basically since he was 7 months old and stopped drinking the amount of formula that he needed to grow and thrive. He stopped eating anything at all and relied on the feeding tube for quite some time, then he pocketed food and now, hallelujah!, he is eating. Lunch at our house is pretty flexible. I give him a couple of choices and he tells me what he wants to eat. Today he had Mac n Cheese and ate an entire container (270 calories!)... For dinner I try to make things that I know he will like and won't have problems with eating. We want him to know that he is expected to eat what is served for dinner but I keep it Landon friendly too. We are also sure to only put an amount on his plate that isn't very much to expect him to finish. Today, I made a pasta dish and put 7-8 penne noodles on his plate. He took a bite and told us that he was done and that he wanted "strawsherries" (strawberries). We told him that he could have strawberries after he finished what was on his plate. Let the fit began, and it did... By the way, the child would eat strawberries all day every day. Too bad they aren't packed with calories! Then he asked for Mac n Cheese. We told him no, that he could eat his dinner and then have strawberries (fit continues).. He did eventually eat the rest of his noodles and had his strawberries. Part of me just wanted to give him Mac n Cheese because he would have gotten a heck of a lot more calories out of that than the few noodles he had for dinner today but it's not the lesson that we want to teach him. If it means that we can't cut back on his formula as soon, then so be it. Some may not agree, particularly those who know the complexity of feeding issues, but I know Landon and he is asserting himself right now. In many areas of his life, we are trying to enforce that he needs to follow our rules and that he doesn't not rule the roost. That leads me to bedtime. Landon has been an awesome sleeper for a while now... I had friends over one evening and I put Landon to bed as they were there. They commented how they cannot believe that he went right in and to bed. We've had the same routine since he was a year or so and it works for everyone. He wouldn't get out of bed unless he was given permission. It was wonderful. Then those weeks prior to him turning 3 years old happened and that all went away! In his defense, a baby brother probably hasn't helped the situation. My mom friends are probably so tired of me asking for more suggestions and feedback. Anyway, tonight began as most nights have- we read books, we say goodnight with hugs and kisses, and the "Mommy!!!!!!" starts... I go in and give him an extra hug and kiss. "Daddy!!!!" Jimmy does the same.. He comes out of his room- given a warning and put back to bed, comes back out. I close his door all of the way because he was told if he comes out of his room again, that's what I will do. He screams hysterically because the door is shut (I expected this).. He starts coughing and throws up the formula I gave him before bed and strawberries.. Nice.. I worry all the time when he gets worked up. It's not hard for him to throw up and then not only do I have to clean it up, but there goes the calories...We just can't let that fear prevent us from letting things happen and him learning lessons. Luckily he didn't throw up on himself so I told him to get back in bed, cleaned up and reminded him what the consequence would be if he got out of bed again. He did not... Thankfully because my favorite show and bed were calling my name tonight!

A Weekend to Remember...

We did it! Jimmy, Landon and I attended our first Cystinosis conference sponsored by the Cystinosis Research Foundation (CRF) this weekend. We left Thursday morning for Newport Beach, CA and returned home Sunday evening. Jordan stayed home with "Maw Maw (Grandma)" which was difficult for this mama but it was a good decision. It would have been much too hard on him. Where do I even begin? I could never include everything on this blog that happened and describe every emotion we experienced. It truly is a family and I have to tell you that to see a bunch of kids with Cystinosis run around just totally warms your heart. It was the cutest, sweetest group of kids ever! I know I am biased but I can't tell you how many times Jimmy and I looked at each other and said, "she is just too cute!" And the older kids take such good care of the little ones. The first time we left Landon with the sitters, he was very excited about the toys but afterwards was not happy when we tried to drop him off. One little guy took Landon under his wing and asked the balloon guy to make Landon a monkey and brought it to him. The Stacks (founders of the CRF) are incredible, incredible people. They are kind. They are knowledgeable. They are resourceful. They pour their whole heart and soul into finding a cure and we are so thankful for their support. I have mentioned this before, but Nancy Stack was the first person we spoke with after Landon was diagnosed. We did a google search, found the Natalie's Wish website and sent an e-mail. She responded to us so quickly and got us through the most difficult time in our lives. We so badly wanted to meet her and the people that work with her. And of course, such a special family has only the most wonderful people working with them to run the organization. We got the bigggest and most genuine smiles and hugs from Stacy and Zoe who are Nancy's right hand ladies! I think Landon may have had a bit of a crush on Stacy. He charmed his way into getting several lanyards that were being used for the name tags. =0) Our first conference day began with the families taking turns speaking in front of the group about our hope and inspiration. There were lots of smiles, tears, applause, hugs... Following this, the first day included a lot of background and information about Cystinosis. There was a ton of useful information. The second day was focused a lot on the research that is being done. We got to meet Dr. Cherqui which is a researcher that we have read lots about since Landon was diagnosed. She is in search for a cure! I blogged quite some time ago about the first stem cell clinical trial that they are recruiting for. It's not a study that Landon can participate in. They are looking for adults 18 and over with Cystinosis or anyone 13 years and older who cannot tolerate Cystagon. They are taking stem cells from a healthy sibiling (of the person with Cystinosis). It is very difficult to find a match (not just any person with Cystinosis with a healthy sibling is the perfect match that they need). No one has been recruited yet and they really don't know if anyone will be able to participate at all... The big study that was discussed is 3-4 years away from a clinical trial, at best. This is if there are no adverse events (complications in research). It will be a bone marrow stem cell transplant which will involve using the patient's own stem cells and genetically modifying them and then reintroducing in the patient. This has been successful in mice and Dr. Cherqui reported that this has been successful with other diseases. It would involve a round of chemotherapy. Another study that was discussed focuses on corneal cystinosis (crystals in the eyes). Landon does not yet present with crystals in his eyes but we know that it is coming. He actually is due to visit the opthamologist very soon. Those who have crystals are instructed to put eye drops in their eyes every waking hour of the day. Compliance is certainly an issue. Researchers have developed a wafer that has tiny cysteamine molecules that will slowly diffuse in the eye. Landon could put this wafer in his eye once a day, week, month etc.. depending on what they are able to do.. Regardless of how often, it is much better than putting drops in his eyes every hour! They are predicting that this will be ready for clinical trial (meaning that they will be recruiting participants) in 1-1 1/2 years. And, in other good news the 12 hour drug (to replace the Cystagon that we are giving Landon every 6 hours, including in the middle of the night) may be approved by April 30th. Ahh! So close! I was told by Landon's nephrologist that it shouldn't take long to become available to Children's Hospital in Pittsburgh because they have one of the larger numbers of patients with Cystinosis in the country. Ah! I'm excited! There was some discussion that you could only take it if you can swallow a pill, but thanks to my buddies in the Cystinosis community, I know that several kiddos with a G tube take it by mixing it with applesauce so that it doesn't clog the tube. A couple of friends of ours spent a month or so trying to figure out what to mix it with... Thank you! =0) Last but certainly not least, we were fortunate enough to have the opportunity to attend a fundraiser that the Stack's held while we were in CA. Words can't describe how incredible it was. The food was great, the room looked beautiful, people generously donated thousands of hundreds, thousands of dollars. Jimmy, Landon and I were asked to go in front of 450 people present at the event to present a check (one of those large checks) for the amount of money that we donated to the CRF last year which was over $19,000! We could not, by the way, have raised that money if it was not for our family and friends who help us to organize these fundraisers and who take the bull by the horns and organize their own! We have such generous people in our lives! A friend of mine, that I met through the Cystinosis community, told me this weekend that she can tell that we have a lot of support just based on the number of people who "like" and comment on my pictures and status updates on Facebook. We are so so blessed. So, thank you, thank you, thank you!