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