Tis the Season

It's that time of year, friends... cold and flu season. Blah! I pray to make it through this season with no hospitalizations. I *knock on wood* have actually not been sick, with the exception of a mild cold here and there, since I was 7 months pregnant with Landon. My poor husband, on the other hand, catches something that puts him down and out pretty much every year. I used to get really sick every year. I blame that on working in daycares and school districts where I was exposed to millions and millions of germs. Anyway- Jimmy caught something a little over a week ago. Laryngitis and a lot of terrible night time coughing was the result of the virus. On Friday Jimmy said that he hopes Landon doesn't get sick. Sure enough, it started on Saturday. The sneezing and boogies started and off it went... As the days go on, his symptoms change a bit. He's not sneezing so much now but has the nasty cough that kept Jimmy awake night after night. It's so strange to me because he's not all that symptomatic at this point. But, the poor kid is so sleepy, so clingy and so groggy much of the day. I was concerned enough about his behaviors that I accepted an appointment at his pediatrician's office at 7:45 last night. If you know me, you know that I avoid messing with bed time at all costs unless it's a fun, special occasion every once in a while. The pediatrician confirmed that he has no ear infection, sinus infection... which is great, so now it's just a matter of waiting it out. In the mean time, our boy is very much attached to me which I think is pretty common for sick kiddos. They want mama. He insists on laying on top of me which is a bit difficult with my protruding belly. Tonight I put him to bed and actually laid in bed with him. This never happens simply because Landon has been sleeping in his crib since 2 weeks old so is not used to sharing his space. It's a good thing but sometimes I love the idea of cuddling with him in bed. Anyway, he draped himself across my belly and fell asleep. I'm sure there is reasoning behind it which centers around comfort- as uncomfortable as it is for him is as comfortable as it seems to be for Landon. But, I'd like to think that he is comforted by being close to his baby brother. =0) One other thing I wanted to mention is another article that I wrote about Landon. I may have mentioned it a while ago but I was asked to write up a blurb for a handbook that the Cystinosis Research Network was creating. They came up with the idea to create a handbook that could be distributed to families whose children are newly diagnosed. I was thrilled to be considered! I think that this is so important and can be a way to not only educate, but to give hope to families who receive that devastating news. I remember how scared we were when Landon was in the hospital and first diagnosed. We had no idea what it meant and a lot of what we read was not so great. Luckily we were put in touch with families who were able to give us hope and answer questions, but having literature such as a handbook would have been wonderful. Anyway, the handbook was created and is available in electronic form. It should be available in print this summer. Very cool! It is so important to me to offer hope and optimism to other families in our community. Landon is still one of the newbies, particularly when you think about how few people are diagnosed, but he really is a testament to how a person can thrive with this disease. His nephrologist is kind enough to give lots of credit to Jimmy and I for taking care of him. But I give most of the credit to incredible doctors who know their stuff and a very resilient little boy. Jimmy and I do what we are told to do and we love our son... We're parents... Anyway, here is the link if you are interested... http://www.cystinosis.org/ Just go to that website and click on the link to the handbook. Enjoy!

News in Landon's Therapy World

Oh it's been too long, again, since I've updated! We have been so, so busy!! I updated last about our Second Annual Lots of Love for Landon Halloween Event.. We don't yet have a final number of what we were able to donate because I still have some checks that need to be sent to the CRF. We're also adding to the number of donations as a result of a recent family loss. My grandfather died on November 2nd, the day before our fundraiser. The interesting thing is that my grandma (his wife) died last year on November 3rd. Their deaths were similar in that they functioned well and were in fairly good health and all of a sudden fell ill then died within weeks (like 2 weeks...).. When my grandmother died, my grandpap insisted that in lieu of flowers, money be donated to the CRF in honor of Landon and in memory of her.. So, we did the same thing when he died. My grandparents were devastated when Landon was diagnosed with Cystinosis. They prayed all the time for a miracle and for a cure for Cystinosis. If they have any say up there in heaven, there will be a cure in no time!! I had posted a while ago about going to the Children's Institute and that they were hoping to conduct a few tests to see if Landon had abnormal breathing patterns while eating and if he had a particular swallowing disorder. One test indicated that he does have abnormal breathing patterns when swallowing, but with further testing called a Barium Swallow Study we learned that he does not have the particular swallowing disorder that was suspected. This was obviously a blessing although if he did, there are exercises that we could have done with him to help. The researcher and therapist who we met with explained that they do not often check for this disorder with children. It has only recently been studied in adults. They said that Landon's abnormal breathing patterns may actually not be all that abnormal. It's just that children are not usually studied so it's hard to compare. After learning this information, the speech therapist referred us to a site closer to where we live with a new speech therapist and new nutritionist to work with.. I was a bit hesitant because I felt very confident in this therapists skill set but was assured that the therapist he was referred to, close to us, is wonderful and very good. That was an understatement in my opinion. Shelly, Landon's new therapist, is indeed wonderful. She has this subtle confidence, does not mess around in the least bit (which is becoming very important with our mischievous/boundary testing little man) but is so much fun and has a way of catching Landon's attention. He enjoys every moment of therapy- from pushing the button in the elevator, to playing in the waiting room with very cool toys to the therapy session itself)... We met with a nutritionist last week, who is also exceptional in my opinion, and he happily got on the scale to be weighed and measured. This is huge in itself, because he usually fights getting weighed and measured with every ounce of his being. So let me give you a little insight about where we are going with therapy right now. First off, the nutritionist got him off of the feeding tube. Hallelujah!!! Now, he still gets the same amount of formula that he's had while getting feeds from the feeding tube but instead, we designate a thirty minute period 5 times per day. We give him 2oz of formula, wait 10 minutes, 2 more oz, wait 10 more minutes and then 2 more ounces of formula. This is all given through a syringe rather than a slow drip over the course of an hour. If you'd see the syringe you'd probably gasp a bit. It seems like a lot of milk to be shot into his belly at once but *knock on wood* he has been doing well with it. He threw up a couple of times over the past week (both times right before bed time) but was also a bit congested which always makes it harder for him to tolerate the formula. Not using that feeding tube is so freeing! I cannot even tell you how good it feels to let Landon hop into bed at nap time and bed time and not hook him up to the feeding tube. And, he has been eating a little bit better! We went to a birthday party over the weekend and he kept asking to eat. After eating some potato chips, dinner was served... He ate, and swallowed, chicken and macaroni and cheese. He even took a few bites of birthday cake. I was thrilled and was so excited to come home to tell Jimmy. We went to dinner on Thursday with my mom and sister and he happily ate, and swallowed, steak fries. Again, I was thrilled! The excitement of seeing Landon eat and swallow new foods is overwhelming to me sometimes. It gives me hope that this will be behind us someday. I'm not in a hurry but I see a light at the end of the tunnel.. Today, we met with Landon's speech therapist for our third session. Her plan is to not have us try anything at home that has not worked in the office. First off, Landon sits in a chair, with a belt on that has two arms on it without any protest (this is pretty incredible to me)... Right now he gets a 1:1 reinforcer which means that for every bite he takes, he gets the reinforcement to play with a toy. This may mean that after a bite of a chip, he gets to put the car into the garage and then we take the toy away until he takes another bite. As he sat down, Shelly told him to take a bite of any of his 5 choices (tiny bit of yogurt, tiny bit of applesauce, 3 blueberries, 2 pieces of a potato chip).. I should add that he never eats yogurt or applesauce. At her request, he shook his head and said "no" so she completely turned away from him, offered me a piece of a potato chip and when I bit into it I was able to put the car in the garage. Within 5 seconds, Landon took his bite. This continued for 30 minutes, with no protest from Landon, and he finished everything on that plate. Now, will it go so easy at home- probably not at first because I'm mommy and we are in his comfort zone. I was instructed to have one skill session per day for 15 minutes. This is only half of the time of what he did today, on his first try, with Shelly. I plan to create a special box that will include the toys that he gets to play with during these skill sessions. Another goal is to get Landon to drink milk. He drinks very little aside from water. I have been struggling with some guilt around this because I know how much he loves, craves, water as part of having Cystinosis. But I watched him happily drink a mixture of water and milk today with no problem at all. Shelly assured me that it is fine to give him water but to give him his "milk" during meals and during skill sessions. So, in a nutshell, this is what's been going on with us. I have to say that it is so cool to see Landon in this current stage he's in. He is become so much fun! Jimmy and I decided to make an impromptu trip, last weekend, to Oglebay to drive through and see the Holiday lights and visit the gift shops. It was awesome! Landon loved the lights and kept saying, "oh wow! oh wow!" I love these reactions. It was a beautiful day and as we were walking, we saw a large, absolutely gorgeous nativity scene. I pointed to Baby Jesus and said "Landon, look, there is baby Jesus." He looked but didn't respond. As we walked back (well we walked, Landon ran the entire time) and again, passed the nativity scene, Landon stopped and began to make a crying sound and rubbed his eyes. I giggled and told Jimmy that he was crying because he saw a "baby." Hey- at least he's prepared for what's to come in January, right?! =0)

Second Annual Lots of Love for Landon Halloween Fundraiser

Well, yesterday was the big day. I haven't posted in a little while because we have had a very, very busy couple of weeks. I will post more about the things that have been going on in another entry, but let me tell you about our second annual Halloween fundraiser! The fundraiser was a big success!! We are so, so, so blessed! There were approximately 200 people in attendance. There were lots of great costumes which made it pretty difficult for our panel of judges to pick only a handful of winners. The food, catered by Cooked Goose Catering, was yummy and they included large cupcakes with filling inside of them. DJ Hypnotyza played great music and kept the night moving along. He really was wonderful. He accepted the "job" with very short notice- the change in the trick or treating schedule affected our original DJs plans. His four year old son was counting on him to be the other transformer and go trick or treating =0). I say "job" because DJ Hypnotyza took nothing for his time. The kids particularly seemed to enjoy him. It's such a big deal for the people who do know us to be so generous, but for those who are generous and give of their time and don't know us, it's pretty incredible. There were about 11 door prizes given away, valued at $50-$100 per prize some of which included gift certificates for restaurants, pet salons, massage and facials, Children's Museum, Carnegie Science Museum, Gymboree Play & Music, the Pittsburgh Cultural Trust; The Chinese Auction included over 30 giveaways some of which included footballs autographed by players from the Pittsburgh Steelers, a Chinese Auction with a little over 30 giveaways from hand made corn hole boxes, wine and chocolate baskets, chiropractic baskets, spa baskets and giveaways, kids bath items, Steeler tickets, alcohol baskets.. Remember, I am just naming some of the prizes.. All in all, it was a great time.. It seemed like those who were there enjoyed themselves. There were some tears from the kiddos who were unhappy about the night being over. We estimated that between $5,500-$6,000 but will get a final number once we submit everything to the Cystinosis Research Foundation. Thanks to all who supported us by being there, donating, reaching out to all of the generous businesses who donated to us. We love and are so thankful to you all!!! xoxoxox Jimmy, Lauren & Landon

2 1/2 Year Old Antics

We had several days of me wondering what happened to my sweet Landon and who is this little boy who replaced him... On Sunday, Jimmy had to get him out of the house for a bit so that I could finish dinner. He was sleep deprived from not napping. He kept demanding things and when I would try to figure out what he wanted or give him what was my best guess, it ended with screaming and insisting on being picked up. I was cooking and trying to get dinner ready and neither of us were giving in. Jimmy calmly picked him up and whisked him away so that I could have some peace and quiet. Monday morning didn't go any better so I threw meds and milk in the car and headed to my mom's house for the day. I know my limits and I know that my patience isn't what it needs to be in dealing with a little boy who is not quite sure what will make him happy. I have to say that yesterday brought about my little boy again. He went to school and actually stayed by himself in his classroom for 1 1/2 hours out of the total 2 of the school day. It wasn't perfect. On a few occasions, his teachers brought him out to see that Mommy was only sitting in the hall and that I did not leave him. I smiled when I heard his teacher say, "go tell her, tell Mommy how big you are!" He came running out of the room with a big smile on his face, yelled "Big!" and ran past me to go to the gym. There's a point for his teachers for managing the transition so well. I heard him cry a handful of times throughout that 1 1/2 hour time, but it was manageable and his teachers handled is beautifully. I could hear it all! I realize that I have been giving him more control than I ever expected I would. I believe in giving kids choices and I like to be creative in getting him to do things that he doesn't want to do. Today he got partially dressed while standing in the laundry basket but flipped when I attempted to put his pants on. I decided to give him a moment to flip and then I picked up him and put his clothes on with a battle, but I got them on. The funny thing is that I understand behavior pretty well... I'm trained as a therapist and I have worked with pre-school age to teen age. My sister-in-law flatters me in saying that she counts on me when it comes to what to do about particular behaviors with her daughter, her friends children etc.. I'm certainly not an expert, but I do have some knowledge and experience. But, when it comes to my own child, it doesn't feel so easy all the time. There's way too much emotion involved so sometimes I have to take a step back and remind myself what Landon is trying to tell me or what he is trying to accomplish by acting out. Jimmy is more of a black and white thinker than I am... This certainly helps when look at him with that defeated expression. Lucky for us, one of us can pull it together to handle situations. On another note- we visited the Children's Institute today. The breathing/swallowing expert was there today and told me that she'd like to do a bit more testing. She really wants to get the picture of his esophagus when he is swallowing. So, we scheduled the swallow study test for next Friday. I have a few tricks up my sleeve that may help this to actually happen. I'm not totally confident, but I trust the experts in the room with me and I know Landon. We are in a much better situation than we were when we originally tried to get the test done at Children's Hospital. Landon has become much more comfortable in the environment and with the therapist. Maybe too comfortable.. haha.. Today he was sitting in the high chair and the xray machine was positioned in the way it will be during the test (on each side of his head). We were trying to get him to take some bites and he looks to the side and proudly says "S!" I asked him where he saw an "S." The therapist giggled and in a surprised tone said, "yes, there is an S written there." He followed up by reciting the other letters that he saw in order. He spelled out the manufacturer's name. The therapist said, "wow, he is pretty good at distracting." My response was, "you have no idea." I admit that I looked forward to the day that he wouldn't seem like such a baby. I know any parent reading this will shake their head and say, "it goes so fast. Don't rush it." You have to understand though. It hasn't gone all that fast with Landon. This disease kept trying to hold him back in so many ways. He has conquered so much and now, really is a typical 2 1/2 year old. He was not a typical 12 month old, 18 month old, 2 year old... Now he asserts his independence, he tests boundaries, he sat at the table and ate scrambled eggs with ketchup this morning and insisted that I add more and more ketchup while he watched Wiggles and wore his pajamas and fireman's hat... He laughed hysterically as a I danced in the front seat of the car to the song Gangnam Style, he sat at his table this afternoon with a plate filled with cheesey chicken casserole leftovers from last night and strawberries then had to be reminded to eat his noodles and not just strawberries... This all JUST started for Landon, for us. So yes, are his 2 1/2 year old antics frustrating- absolutely! But, we'll take the not so good with all of the incredible things going on right now... We are certainly blessed and there's not a moment that goes by that I don't know it!

Just Breathe..

I started taking Landon to the Children's Institute a few weeks ago following an evaluation.. I think I posted about this evaluation. The Speech Therapist who evaluation and is now treating him suspected that he has a disorder called Esophageal Dysphagia. I've done some reading on the subject but can't exactly understand, from the reading, how Landon may be affected. The way to diagnose it is to do a Barium Swallow Study. We attempted to have this test done several months ago, without success... They needed Landon to sit in what looked to be an infant seat and wanted him to eat. There was just no way... He freaked, absolutely freaked, as soon as we walked in the Xray room and Jimmy put on the protective vest. I had to leave the room because I am pregnant. Anyway, Jimmy and I weren't very concerned because we didn't believe that there were any issues, but thought that his pocketing of food and spitting it out was a result of being tube fed. Fast forward a couple of months, and we are told that they do need him to have this test done to diagnose Esophageal Dysphagia (ED). I expressed concern and they assured me that we would slowly work to get him more comfortable so that he can do the test. In addition to this test, there is another way that this can be diagnosed which is by using a machine the measure his breathing patterns while he eats. As you can imagine, I had doubts, major doubts, about getting either of these tests done. I actually became upset and frustrated after a few weeks of going... I felt like we were going to spend weeks and weeks trying to get tests done that would ultimately never happen.. Well, this week Landon surprised me. The breathing test required him to sit in a high chair (which is a fight in itself) and place a tube that looks like the tube used for oxygen in his nose as he takes bites of food and drinks. The tube is connected to a computer and the breaths you take are recorded on the screen with a red, green or black line that either goes straight or moves up and down indicating inhales and exhales. The straight lines means that it's not in the nose correctly. Last week we had put stickers on the tube to decorate and he watched as I put it in my nose and "drew pictures" with my nose that he saw on the computer screen. He put it in his nose VERY briefly but did seem interested. Well, this week when Mary Beth (his therapist) placed the tube on the high chair and he seemed excited to pull it out of the package. I asked him if I should take a turn first or if it was his turn. He wanted a turn first. So, Mary Beth place it in his nose and behind his head to keep it in place. Rather than remove it immediately, which is what I expected, he proudly took bites and took drinks as directed so that he could see the line move on the screen. I was AMAZED! And guess what- he actually cooperated long enough to get some answers. Apparently this test can diagnose ED and now we don't have to worry about the Barium Swallow Test. The test confirmed: he does have ED. Now in reading about ED online, I'm struggling to make sense of how this diagnosis fits with Landon so I will explain it the way I understand it... Take this with a grain of salt, at least for now until I have a better understanding. It is believed that abnormal breathing patterns is what is causing Landon to pocket and spit out food. Rather than take a deep breath and hold it as he swallows something, he releases his air prior to swallowing causing discomfort in swallowing. So, if you were to take a drink- let all of your air out and take a drink. It's strange and uncomfortable. She also said that he demonstrates pretty shallow breathing anyway. Landon prefers food that are saucy- noodles with dressing or sauce and lettuce with Ranch dressing are his favorites. He doesn't usually pocket these foods (when I say pocket, I mean that he holds it in the side of his mouth). Supposedly, this is because it slides down easily so it's not quite so uncomfortable. The treatment involves breathing exercises and exercises to strengthen the respiratory muscles. So, it got me thinking... Because of his phosphorus deficiency, Landon's muscles were weak. They became stronger after medication and getting his electrolytes within a normal range along with physical therapy. I wonder if muscles in other areas were affected in a similar way? It's hard for me to imagine that this issue is unrelated to Cystinosis. Particularly since I was told by Mary Beth that Landon is the youngest person that they (researchers in our area who are studying this)have diagnosed. Apparently a study was just done with adults who have this problem and they are now exploring it in children after the adults reported that they have experienced the symptoms of this disorder for as long as they can remember. It is very common to hear, from those in the Cystinosis community, that children with Cystinosis are not great eaters- tube fed or not tube fed. There are a lot of theories why this is the case. But, could another be that some with Cystinosis have this breathing problem which prevents them from swallowing? Landon has been ravenous lately.. He asks to eat ALL.THE.TIME. Now, sometimes it seems to be in attempt to avoid going to sleep. Oh yes, he is becoming a bit manipulative. But he really wants to eat and really seems to enjoy lots of different kinds of food. IF we can conquer this barrier of not swallowing everything he puts in his mouth, our future with the feeding tube and milk may not last quite as long as we once thought. I'm not jumping ahead of myself, but it's kind of nice to think about...

All Clear...

I am shocked, pleasantly so... Landon does not have crystals in his eyes yet. I told his nephrologist that I feel like we are pushing our luck here. Yesterday after I posted and shared the blog, a handful of people in the Cystinosis community reached out to assure me that the crystals really are an easier part of Cystinosis and that all will be okay.. I appreciated it so much. I cannot explain what their (the crystals) presence means to me. I think, for me, it's about more than just putting eye drops in his eyes. Or maybe that is it... I'm not used to Landon putting up a fight with anything medical. It makes compliance easy. Yeah, maybe that's it.

Facing the Inevitable, maybe?

Well our poor boy was sick with a cold this weekend... Runny nose, sneezing, congested, coughing. No fun! We pushed Pedialyte through his feeding tube and were able to get some of his medicine in him- enough that my anxiety wasn't through the food because he was missing doses. Thankfully today he tolerated some milk and all of his medicine. I really hope that his belly makes it through the night because he is getting milk. You know how it is- milk and phlegm do not combine well! Other than that all is well... We are still working on transitioning to preschool. I left him twice and the third time I tried he got so upset that be threw up. So with encouragement and reassurance from him teachers, and others in our lives whose opinion on early childhood stuff I trust, I am staying in the classroom with him to give him time to develop a relationship with his teachers. Many would say that I just have to bite the bullet and leave, but its not something that I feel ok about and have to trust my instinct. A friend and mentor of mine asked what my goals are for Landon. My goal is for him to become a little more independent and to learn to trust adults who are not his parents or family members... We are getting closer. He does ask his teachers for things now. He sits with his friends at snack time and actually eats. He doesn't depend on me to get him a drink or play with him as much. And he goes to the gym without me... Baby steps... We are getting there though. Lastly, tomorrow is a doctor's appointment that causes me the most anxiety- opthamologist. I'm getting used to lots of good or uneventful appointments. We will probably be told tomorrow that there are crystals present in Landon's eyes. At the age of 2 1/2, it is likely that they are there. This means that we will start giving him eye drops 3-4 times a day, to start, and will increase that to 8-10 times, or preferably every waking hour of the day. It's a bit overwhelming for me to think about because it may come at a time in which Landon is not always cooperative and will tell me no and will kick and scream to be released from my hold to avoid what I have to do. I am sure we will learn tricks to be more efficient. I know it will get easier... I know...