Feeling sad.. and blessed..

These past few days have been particularly emotional. I have tried to avoid watching the news and seeking out information about the tragedy that occurred in Newtown. It physically and emotionally hurts to think about what those families lost and to think about the heroes who put their lives on the line to protect those sweet children- I've always appreciated teachers, but this takes it to a whole new level. Jimmy has been keeping up with the latest news and sharing some of it with me, but I can't do it. I've said before but as therapist (I still identify as one despite not working as one right now), I know how to stay in my head and protect my heart so that I keep myself together and I know that I have to stay away from knowing too much or thinking too much about sad things.... I feel much deeper since Landon was diagnosed... I experience emotions in a very intense way, not only since becoming a mom, but again, since Landon was diagnosed. With all that being said, we are reminded to count our blessings... Landon continues to thrive and love school, he is eating well and when weighed by his Nutritionist last week had gained almost 1 pound in 5 weeks! He is about 24lbs now. I realized yesterday that he has gained about 10lbs since he was diagnosed a year and a half ago. How incredible is that? I think we are going to continue to see a nice spike in weight gain in these upcoming months because he is still getting 900 calories a day from formula (through the syringe- no longer through the feeding tube, remember...) but he is eating so well so is getting lots of calories every day! A few things that we are currently working on with Landon is getting him to slow down when he eats and not stuff his mouth with food. This is fairly typical for an 2 year old, but it's not what we want to encourage. We also are working on getting him to handle pureed foods better (yogurt, pudding, applesauce).. The irony in this is that many people have asked me why we aren't starting fresh with him and going back to pureed foods. That's what we start babies on, right? Well, pureed foods aren't so easy for those with G tubes who by nature of the tube, can experience respiratory issues. It doesn't feel comfortable to eat pureed foods. It makes sense to me now because Landon ate pureed foods prior to getting a G tube but after he was diagnosed and came home with the G tube he had no interest. I have said this before but our Landon is quite a little comedian. I always say that he is a combination of Jimmy and I- Jimmy likes to make people laugh and I'm very easily entertained (that's why our relationship works so well!)... Landon lives to be silly and make us laugh, but so easily laughs that big belly laugh that leaves Jimmy and I laughing ourselves. At the early age of 2, he found a friend who thinks he is hilarious so Landon is sure to be silly with Jack so that he can get a good laugh out of him! Landon has taken a liking to Sansa (aka Santa)- from afar (he will not get too close and we could not get Christmas pictures taken with Santa this year) and enjoys our new Elf on the Shelf tradition. He wakes up in the morning and asks "Where Elf?" Jimmy and I are REALLY enjoying the holiday season this year because of Landon... And lastly, we are getting ready to welcome Jordan to our family. He will be here in 4-5 weeks and we're sure that Landon is going to be a wonderful big brother (it may take some time and patience to adjust). He is going to fit the role just fine... See- I told you that we are very blessed!

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...

Feelings

I realize that as a parent, you sometimes have to set aside your feelings and keep them there, in order to parent in the way you feel you need and want to. This has allowed me to sit in another room while Landon cries it out in bed and certainly is getting me through separation issues at preschool. We got home from spending time at my mom's tonight. Jimmy is out of town overnight so I gave him a bath, read stories and put him to bed. This is usually Daddy's thing, but only in the past couple of months. It used to be me on most nights. Anyway, Landon was pretty adamant about not wanting to go to bed. I left him crying after reading several books and telling him it was time for bed. I called Jimmy after leaving the room and Jimmy asked if we could do a quick video chat. I agreed since he was upset and I knew I had to go back in to check on him. It was just what Landon needed. He was so excited to see his Daddy! Unfortunately, he still was having a hard time going to bed. I ended up staying with him until he fell asleep. As I sat with him, it gave me the opportunity to just watch my baby boy and to think. Think about how much I love and adore him, how I would do anything to make him happy and relieve his distress... It's almost a painful and vulnerable feeling. To think of anything or anyone hurting him makes my heart hurt- missing his daddy, the affects of Cystinosis, his first love breaking his heart, someone hurting his feelings... Yes, this is why I put my feelings aside a lot of the time. If not, I would never let him cry and figure it out himself. I would be creating a bit of a monster. Instead I will let my feelings out by smothering him with kisses and cuddles...

Moving On...

In all of the busyness of big boy beds and preschool, I forgot to share some news. Landon had his one year evaluation for the early intervention services- in other words, all of his therapy. He was tested in several areas including gross motor, fine motor, perceptual development, expressive language and receptive language. At baseline, he scored below average in gross motor (walking) and expressive language (verbal speech). Well, I was given the news that he scored average or above average in all areas!!! This time last year, Landon was just started to walk with assistance and today he was running around the park, he jumped with both feet off of the ground (he has done this a few times but not consistently), and climbing up onto the first row on the monkey bars. Because of his scores, he does not qualify for services anymore. I am a little sad because we had a terrific group of women who were so patient and so good with Landon but I think we are ready. Yes, ready to move forward. He will begin meeting with a therapist at the Children's Institute once a week for feeding therapy because we haven't reached our goals yet. Landon did a great job of assuring me that he doesn't need services by walking down our front steps independently and eating pretty well over the past few days. So I genuinely, whole heartedly thank these love women who helped Landon and us. Job well done!

Transitions

They say to only make one transition at a time. Unfortunately timing is a bit off so we are slowly making two big transitions- preschool and a big boy bed. Maybe we should throw potty training in there just for fun, no? No! Potty training isn't even on my radar right now- well, maybe it is but I promise not to act on it. Landon reaching milestones has been pretty easy so far- easy in that it either was a slow process (walking) or he just decided one day to go for it (giving up the binky).. We aren't too used to this tough love kind of thing. I have always felt that Landon did things at his own rate and no sense in stressing or pushing it. But I don't think that the theory will work with preschool or the big boy bed. He seems to only want to go half way in both situations. He will go to school and participate but Mommy stays too... He will lay in his big boy bed but don't put his blanket and Sleep Sheep there because he is not sleeping there... Our plan? Transition him to the big boy bed Supernanny style. Do his normal bedtime routine, put him in bed and face away from him. We are still in the room but not engaging. If he gets out of bed, put him back in without saying anything. As far as preschool, I am going to stay with him and if he seems comfortable and is okay with me leaving then I will but otherwise I am not going to push it, at least for a couple more classes. Wish us luck!!!!

Multiple Personalities

Landon is on the mend, I think. Sick kids, particularly those without the ability to clearly communicate, are pretty confusing. Landon woke this morning in a pretty good mood. He tolerated a full night of Pedialyte through his feeding tube. His belly tolerated 4oz of milk, twice, and all of his meds. He kept asking to go outside so we took a walk, visited Aunt Jaclyn who lives down the street and played at the park. By the time we got home he was a little agitated then I noticed that he was extra clumsy. I suspected that his fever may be returning so gave him Tylenol and put him down for a nap. The confusing part is the abrupt changes in his mood and behavior. One moment he is laying on me looking groggy and the next he says "car," jumps on his car and heads for the door. He goes from acting silly to being ago totaled and clingy. Poor Jimmy came home ready to either play or get some cuddle time on the couch and Landon just wanted me to hold him. He laid with me, them wanted to lay on the floor. Then at 7:30, he stood up and told Jimmy "nigh, nigh." Jimmy took him to his room and by the time his Jammie's were on he seemed like himself again- even insisting that his car go in his bed and that Jimmy should read another book even after being told it was the last one. Oh, and of course he tossed his monkey on the floor only to cry in request for us to return to replace him "fa dahn" he told me. Yes, monkey must have fallen down 10 feet from the crib. Well, hopefully tomorrow is a better day. We are keeping him hydrated and he is getting his meds. That's all I ask at this point!

Best Buddies

The school saga continues- Landon had a tougher day today. One reason, I think, because he knew that Mommy tries to leave and was determined to not allow that to happen. I will to rewind a bit to tell you the second reason. Last night, upon putting Landon to bed and starting his feed, he vomited. Jimmy and I thought that it had to do with lots of running around and being a bit overheated. We stopped the feed and started again right before we went to bed. He woke at 2:30am and vomited again. He also felt warm to me. I tried, without success, to take his temperature so resorted to giving him Motrin, turning off his feed and putting him back to bed. He slept until 8am, held down his first feed of the day and didn't feel warm so off to school we went. He was clingy at school but I took that as being anxious that I would leave. Plus, he had short periods of time in which he played and seemed to have fun. I played the tough love game a bit at school. I refused to hold him and try to only be present and not engaging. We got home and both cried- Landon for his reasons and me because- well, it is not fun to do this while separation thing. Did I handle it ok? What have I done to encourage him to be so attached and anxious? Soon after we got home, I sat on the couch, picked him up and he fell asleep on me. This is not Landon, not at all. So I felt his head... He was burning up. I felt like crap! Poor kid shouldn't even have gone to school. So, we are skipping meds and pushing Pedialyte through his feeding tube slowly, in hopes to keep him hydrated. On another note, I thought back to the morning. We are blessed to have two little boys in our neighborhood, Landon's age, with great parents (an added bonus, of course)- Santino and Ryan. Us parents were just recently talking about how great it will be to see how their friendships form. They have very different personalities now although it seems that they may compliment each other. Well one boy, Santino, is in Landon's class. At least 5 times in the two hours that they were in class today Santino attempted to engage Landon in play. Landon did not reciprocate, but each time, acknowledged Tino and seemed to get what he was doing. Almost as if to say, "Now is not a good time, but thanks dude." It really was sweet! Santino's mom told me that he kept telling her that "Landon sick." Haha.. He knew even though I didn't! Part of me blogged about this day so that I never forget. I think these three boys will take care of each other as they grow. And I want to remember that it all started at the age of 2.

Dear Landon...

My Dearest Landon, I know that you know.. You know I get tired more easily than I used to. You hear that extra effort in my voice that it takes when I pick you up, or when I get up from changing your diaper, or getting you out of the crib, or whatever... I walk slower up the hill than Daddy when he is pushing you in your car, I sit down on the bench when we get to the park because I'm a bit more out of a breath now. And, we are driving to the bank and Rite Aid instead of walking because pushing you up the hill just does not feel like an option. What you don't know is that this is going to get worse until your little brother is here in approximately 20 more weeks. Believe me Buddy, it is totally worth it.. I know! What I also know is that you may be having yourself a bit of a laugh in all of this. I think that you know that your mommy's energy level is no where near what yours is throughout the day. Oh yes, Landon- you know.. Just know that I am on to you, and I will, my boy, get you back some day. That day will certainly not come soon after your brother is here because I know I will have even less energy than I do now, but the day will come. Oh yes, my boy, I will get you back.. Love, Mommy Okay- so of course I am being silly. But we have had a morning in which I just want to collapse on the couch and Landon, well, doesn't... As I sit here typing with "Project Runway" in the background, I remember that the kitchen, dining room and living room are a disaster. So, once I hit Publish, upstairs I will go to retrieve crayons that are mixed in with blocks from his Alphabet Train and to gather toys cars from the hallway, under the couch and crashed throughout the living room. He does make me laugh though... He tries really hard to prolong the stories, the rituals before his nap. Today, he followed my into his room to choose book juggling two cars in his hands (juggling because both were too big for him to hold with only one hand). He looks at my and says, with a very concerned look on his face, "Mama, ChooChoo?" I told him to go ahead and get one ChooChoo train. He brought back one and lined it up beside the two cars that he had already proclaimed were going to bed with him. Today was Day 3 of Pre-School... Landon woke up this morning at 6:30am. His usual wake up time is between 7:30-8:00am so I was a little concerned that his mood wasn't going to be great, particularly if I wanted to disconnect a bit and allow him to show some independence at school. He seemed okay this morning until about 30 minutes before we had to leave and then he wanted to be held and wanted lots of attention. It took some extra silliness on my part to get him to put his shoes and socks on and we had to take a small car with us. Landon really likes to put his backpack in his cubby so that made his mood a little better once we got to school. He wanted to carried into his classroom but then as I put him down, he seemed excited once I reminded him where the bin of dinosaurs is placed. Then his teacher directed his attention to the table with paint. After a few minutes, he wasn't paying much attention to me so I told his teacher that I was going to attempt to go into the hall. I gave him a kiss and told him that I would be back soon. He said, "bye bye!" I couldn't believe it! So, I walked into the hallway and joined several other moms who were waiting with their breath held waiting to hear cries coming from their child. The cries did happen off and on throughout the hour we stood in the hall. We stayed put... About 45 minutes into the hour long class, one mom peeked in and told me that Landon was crying. I actually couldn't really hear him and told myself that his teacher would get me if she needed me. A couple of minutes later, she came out the door and told us all to come in. Landon along with a couple of other kids were crying. His teacher said that she wasn't sure what provoked it. He had been playing, got upset and started crying. Before then, she said he had done very well. I am so proud of my boy! I never thought that I would be able to walk out of that room today. I hope that since he experienced me leaving and coming back, that Thursday's two hour class will not be much of a problem. I still plan to stay at his school just in case.. I wish I knew that at some point in the next couple of weeks, that we will have conquered this anxiety about being left at school, but I know better... I imagine that we have a fair amount of years ahead of us where Landon will cry when he has to go to school and not want to leave my side (returning from summer break, holiday break, a bad morning, a new baby brother...). It's certainly not easy, but inevitable!

Our Little Clown

If we are getting a peek at the boy that Landon is to become as he grows older than I anticipate a lot of phone calls from his schools over the years. He will do anything for a reaction. He has been this way for a while now but lately it seems that he will take his consequence (time out) to get a laugh or simply to push buttons. Then giggles through time out and pulls out the "lines" that usually get him a laugh. Yesterday we joined my mom, sister and brother-in-law for dinner at a restaurant. Landon was told that he had to sit in the high chair until I finished my meal. He stood up and refused to sit down giggling all the while. So I put him in time out next to the table. All laughed and yelled "She! (that's how he says my sister's name) WoWo! (his word for yoyo)! My sister always tells him to say Yoyo because the way he says it is funny. A few days ago he stood up on the seat of his little table... I ignored him knowing that he did it for the reaction. He yells "Ma! and laughs. We alternate between time out and planned ignoring. He does listen after given his consequence but does it with a smile. Yesterday was day 2 of preschool. Moms and Dads were instructed to either wait in the hallway or stay in a designated spot in the classroom and try to engage with our child as little as possible. Half the time was spent trying to get into my lap and the other half was spent playing happily. He actually held his teacher's hand which made me smile since it often takes a while for him to allow someone to hold him or touch him. Next Tuesday his teacher will have the parents stand by the door and then we will stand in the hallway on Thursday. I know he will be okay. It it is really tough! It's not always easy growing up...

Not so gentle reminders...

I was faced with a reality twice today that my baby boy is no longer a baby. Today we met Landon's teacher. She, and the classroom aid, seem wonderful. We talked about some things she may notice and specifically that Landon needs unlimited access to water. Landon did pretty well. He wasn't very clingy and seemed interested in the toys and classroom. I plan to spend time there two more times and then, hopefully, he will be okay to stay without me. Then this afternoon Jimmy, Landon and I visited Ikea and chose a bed and dresser for Landon. His crib is going to move next door to his little brothers room for his arrival in January. Landon happily climbed up on the floor model of his new bed. He melted the hearts of his mommy and daddy as he laid his head on the pillow with a wide grin. Now, getting him to go to sleep in it will probably be a different story but we both think that he is ready. Jimmy and I both are enjoying this stage. It's pretty unbelievable that we are at this point. He still seems to be a baby to me but I have the feeling that the new room and bed along with some independence is going to change my thoughts about that... I loved those days but I do look forward to what is to come.

Feeding Evaluation

Today Landon and I ventured to the Children's Institute in Squirrel Hill. For those of you who are not from Pittsburgh, it is our local children's rehabilitation hospital. We have been receiving services through an early intervention program for feeding issues and physical therapy for about a year and for speech therapy for several months. He has made great progress with eating but we're a bit stumped and trying to figure out the next step. The feeding team consisted of a group of wonderful women- a nurse practitioner, an occupational therapist, a speech therapist, a psychologist and a nutritionist. The appointment lasted for about 3 hours so was incredible thorough. Landon didn't eat any of the food that I brought for him, which included his favorites, but he was much too distracted with all of the fun things in the room so I wasn't very surprised. The occupational therapist "played" with him during the evaluation which made it much easier for me to pay attention and to convey all of the information that I needed and wanted to. I put "play" in quotes because her evaluation was observation of various forms of play with him, for the most part. He really seemed to like her. She had some pretty cool toys that we don't have at home and was lots of fun to play with. Our main goal is to increase the volume of Landon's oral intake so that he has to rely less and less on the feeds. He was pocketing food a lot but that hasn't been so much of an issue lately. I think much of that was behavioral and a habit. First he wasn't eating at all, then he began to put food in his mouth and hold it there (which was okay with us because at least he was interested and willing to put food in his mouth). When he was doing this, we would try to help him move it to the middle of his mouth but when he wouldn't, we would take it from his mouth or tell him to spit it out. I realized a little while back that Landon was exerting a lot of control when it comes to eating. We never wanted to make it a bad experience for him so just followed his lead. It worked for a while, but we then realized that we had to take back some of that control. The psychologist agreed and praised me for what we have been doing and gave me a couple more recommendations. Meal time needs to start ending on Mommy and Daddy's terms- so allow some control but when we see that he is getting antsy at the table, tell him to take one more bite or one more drink before he gets down. She told us not to battle about it if he won't but then tell him that if he does not, then he needs to throw his plate in the sink. Then he sees that ultimately Mommy and Daddy are boss but that he has some choices in the process. Presently, Landon gets two bolus feeds (higher volume during a shorter time) during the day and one continuous feed (goes in his belly slowly throughout the entire night) while he sleeps at night. The nutritionist recommended that we work on eliminating the night time feed. Now, in my brain, I never cared if he had night feeds for another few years. He is asleep, who cares, right? Nope. If our goal is to get him eating on a normal schedule and routine then we have to depend on bolus feeds more than a continuous because they are more natural. We don't eat continuously for hours and hours. We eat, stop, get hungry, eat again, stop and we certainly don't eat while we sleep. So first we have to get Landon back on track with his feeds (7oz twice during the day and a continuous feed at a rate of 80 instead of 65 which is what we cut him down to when he vomited the other night). Once we get back on track, we are going to begin to cut back on the night feed and will add in a third bolus feed during the day. At first I was bummed to hear that (as was Jimmy), but now after thinking about it, I don't see why we couldn't do that third bolus feed right when he goes to bed and turn it off when it finishes in an hour or so. Then he could still be free of a feed after nap time but still get his last feed. Landon takes a medication that serves two purposes- it is an appetite stimulant and it helps to calm his belly so he doesn't experience as many GI issues. We give him this medicine at bed time because a side effect is that it makes you tired. Well, his appetite may have increased after taking it at 8pm, but it's night time and he is feeding through the night anyway so we'd never know the difference. It was recommended that we give it to him twice a day, at 9am and 4pm. Now we have to experiment a bit with this because I don't want him tired all throughout the day particularly on the days that he starts school at 9am. The speech therapist that we saw today thinks that he may have an issue with his esophagus. She didn't tell me the name but I imagine it will be in the report that is written up and sent to us. A researcher recently did a study about this particular problem in adults but she said that they are looking at it in children now and Landon fits the criteria very well. He has low muscle tone for one. The occupational therapist explained what this means and I actually learned that I probably have low muscle tone as well. Obviously I made it into adulthood with no problems which is certainly reassuring! Landon is very flexible. He can bend the tips of his fingers forward (go ahead, I know you are trying it right now)- so can I. She said that the usual way of holding a pencil is often difficult for people with low muscle tone so they tend to hold a pen/pencil using different fingers to make it more comfortable (yep- that's me too).. I read more about it that made me laugh because I also fit the low muscle tone definition. So, anyway, low muscle tone.. Landon chooses certain foods- foods that are "slippery" and go down his throat easily (i.e. salad with Ranch dressing, pasta with sauce) and although he sometimes eats dry foods (dry cereal, crackers etc)it is not his preferred food because it gets caught in his esophagus (if he has this particular problem). I reported that Landon has a bit of anxiety (it has gotten much better).. this is also an indicator of this "esophagus thing." She seemed pretty confident that he has it but you can only know for sure when a Cookie Swallow Test is done. We attempted this test in July and Landon refused. The treatment is fairly simplistic and would involve some exercises. It's not something to be incredibly concerned about but would explain some of the feeding issues. She wants to meet weekly with Landon to begin some of the exercises and wants to work on getting him comfortable enough to actually be able to perform the Cookie Swallow Test. I think a big issue for him is that lead vest that people have to wear. We'll have to work through the anxiety so we can get accurate results for this test. We will also meet with the nutritionist once a month and she will work on the feeds and how many calories he is getting and so forth... I am sure that I am missing quite a bit but those were certainly the main points. We are going to begin meeting with the speech therapist once a week and the nutritionist will be present at one of those sessions a month. Between all of the therapy he gets now, school two days a week and now going to the Children's Institute one day a week-we are really going to have to consider what to keep and what to put on hold because Landon and I certainly can't make all of those things happen each week. I feel good with the plan and goals, and I hope that he makes lots of progress in eating. It actually will be nice that eventually he will be off night time feeds particularly because we are going to transition him soon to a big boy bed. So, Happy Labor Day weekend. It's such an important holiday but it's also hard to celebrate the end of summer! I have to admit, I look forward to the fall, the Lots of Love for Landon Halloween Party (yes, we're doing it again!), the holidays and to meet Landon's little brother Jordan. This summer was great but I'm ready!

The Hard Part

At 3:30am we woke to the sound of Landon crying, hard... I went to his room to check on him and within a moment he threw up. He probably threw up his whole feed which started at 8pm. Jimmy rushed to his room and we took our positions- me undressing and comforting our boy and Jimmy grabbing towels and changing sheets. We can tell when the moment has passed because he stops screaming and crying and begins to talk to us. Jimmy put him back in bed and he said "nigh nigh..." It just melts our hearts. During the process of clean up Jimmy and I both rack our brains to try to figure out why it happened. Was he coughing or sneezing today (mucous from a cold often results in vomiting), did we speed up the rate of his feed, when making the formula was the ratio of powder to milk right? I think we both feel a little better about it when we identify why. The why for last night? A combination of speeding the rate up and maybe some congestion... He coughed a few times throughout the day and I heard a little congestion in his chest. Then I give myself a silent lecture for not knowing better- a mom thing I guess... As we laid back in bed, Jimmy said "this is what bothers me the most- not the medicine, the feeding tube or anything else.." He was do right. Cystinosis isn't much of a big deal anymore, but hearing him scream from his belly hurting and watching him throw up like that.. You just don't get used to. Fortunately, he probably does this once a month and it's not a daily or weekly. So for today, we will cut back on the amount of formula he gets through his tube, slow down the rate and keep an eye on any respiratory symptoms. Tonight we will slow down the rate and hope for the best... So far, so good. We have a resilient little guy on our hands!

Rituals

Landon, like Jimmy and I, is very much a creature of habit. He does well with his routine and knows what comes next. Well, he is also beginning to create his own routines... For the past week or so, we put Landon to bed for his nap and at night and leave the room. After several minutes he begins screaming and crying. At first I ran in afraid that something was really wrong. Now, I still go on but no longer in a panic... Landon has a Dream Lites Giraffe, a small monkey and his sippy cup in his crib. He throws each item our and cries to have them returned. He says, "oh noo!" as i walk in the room. So, I place giraffe back in his place, monkey in his place and his cup where it belongs. Landon says "nigh nigh" and that's the end of it. Am I encouraging it by doing this twice a day? Yeah, sure. But, he goes right to bed after the ritual and it makes me giggle.

School Days...

The feel of summer coming to an end is in the air. The neighborhood kids start school tomorrow. Landon and I are going to "Meet the Teacher" on Sept 4th. He will be going to school by himself, without me, two days a week for two hours. I would be lying if I said that I wasn't very anxious. I have been cramming in classes at Gymboree over the past few weeks to prepare him for being in a group setting and following class instruction again. I have been pleasantly surprised at how well he functions. He doesn't cling to me as he used to when he first started school last year. I find myself placing myself so that I am in his sight when he wanders off because he used to panic if he didn't see me. The poor kid needs to be away from me, right?! As hard as I try to encourage him to be independent and convince him that he is a big bit, I know I still pull him back a bit. I know that it may be a rough transition for our boy but I also know that he will love it and it will be a wonderful thing for him. It's hard to watch our baby become a big boy but I am such a proud mama!

It's a...

Yesterday was the big day! We; Jimmy, Landon and I, got to see the baby for the first time. As I lay on the table with my belly exposed, I look to see Landon with his shirt up looking at his belly. He wanted a turn next! Our peanut's heart beat was 143. The brain, head, spine, limbs etc looked beautiful. And, we learned that we are being blessed with another little boy!! Jimmy is beyond thrilled, as am I. I was convinced that this baby was a girl. We would have been happy either way but the visions of two, energetic little boys running around the house with their cars and dinosaurs just warms my heart! I always thought I would want a girl but now that I have Landon, who is the best piece in our world, of course I want another like him!!! The Hartz boys- it has a nice ring to it! Let me confess though, I am a little afraid of what these two little boys along with their Daddy are going to do to me... Landon is becoming as silly as Jimmy and they are certainly entertained by each other. A boys of boys, and me- oh Lord. But, I guess I do laugh right along, usually! I guess this mama will just have to be one of the boys!

Choose Your Battles

This morning I attempted to convince Landon to wear his cute, white tennis shoes to the park rather than the usual brown sandals that make his feet smelly! I was successful, kind of... He instead chose brown shoes that are not only a bit too big but clearly meant for the fall/winter months. As I reluctantly put them on, watching him beam with pride, I wondered how it happened that I continue to lose this battle with a 2 year old. Am I just tired and "giving in" to avoid a tantrum? Minutes later I told Landon that we were leaving in one minute and he needed to clean his toys up... I watched my little bottom pick his cars up and put them in one basket, the car track and put it in another (all the "right" basket) and take his ball and mitt in the play room to put them on the basket. I smiled... You must choose your battles as a parent.. Our boy behaves well in public, sits in time out and takes his consequence when misbehaving, he cleans up after himself and follows instruction pretty well... If choosing the shoes that don't go best with the outfit that I choose is where he draws the line then I can handle that... We are doing something right...

Imagination...

I cannot tell you how many times a week I stop and think, "I need to blog about this..." and it just doesn't happen. Life happens and blogging often doesn't. I'm not going to promise to do better, I will promise to try to do better! Last weekend Jimmy and I took Landon to Hershey, PA. We left Friday afternoon and returned home Sunday afternoon. It was a quick trip but honestly, it was nice not to be gone very long. It's been a wonderful, exciting summer but I am beginning to feel the effects of being on the run a lot. Baby #2 raises pokes at me from time to time and says, "Mommy slow down. Remember, you have to take care of me too!" I will mention, by the way, that my sonogram is on Monday and we hope to learn that we have a healthy baby who is developing just perfectly and whether we have a he or she growing baking in there! When I say healthy, I mean that all of the organs are the right size and look just right. We won't know until the baby is about 2 months old whether he/she has Cystinosis or not.. I was asked recently but someone in the Cystinosis community why we are not doing prenatal testing and why I would take that chance.. It's a fair question and one that I imagine other people, who know us personally and who just know us in the cyber world wonder. My answer is, because it's right for our family. Landon is an incredible blessing... He is not damaged. Many of us throughout our lives will have to take medicine for lots of different reasons. We can't predict what our health will be like or what life changing events will occur... Landon and this child are no different. Is life a little more complicated sometimes? Yep. Do I feel sad about what he goes through? At times. Do I know what the future will look like for Landon? No, I have hopes and dreams though. Do other parents know what the future holds for their children? No, but I bet they have hopes and dreams too. I know that my boy is the most special, the sweetest, the cutest, funniest, most entertaining little boy on this planet. If you're a parent, I bet you know that too (about your girl or boy). So why not bring another beautiful, wonderful child in this world? Today I took Landon to a Gymboree class... they are, by the way, wonderful classes! The instructors encourage learning and fun and using your imagination. At the end of the class, as usual, the instructor gave me a piece of paper that included the lessons that we were learned and what skills they touched on along with suggestions for activities to do at home. The instructor pointed one out specifically and told me that it's lots of fun and kids learn a lot from it. When we got home I looked at the lesson. It was very cute and encouraged using the imagination, counting, critical thinking, listening etc.. Suddenly I felt like I am missing the boat a bit. I looked at our calendar for next week... therapy 3 days a week, visit relatives, business meeting for my MOMS group, try to fit in another activity for MOMS group since we've been invisible lately, one day of Gymboree class since school starts soon and our membership will expire.. Add in grocery shopping and the other errands that pop up as the week goes on.. Whew! What about Mommy and Landon activities that involve more than shooting cars across the floor, throwing and catching ball and playing in bed under the covers? Are those things important? Absolutely. But what happened to my imagination? I have wonderful activities at my finger tips thanks to the classes we've attended, child development websites and Pinterest. They are in a virtual folder in Pinterest labeled "Kid Stuff." I have yet to try one of them. Now I know some of you reading this will respond by saying, "you have so much going on. You're doing a great job!" It just makes me re-evaluate things. Would Landon learn a lot of the skills that we are working on in therapy through these kinds of activities? Would making the time to do activities be just as, or more, advantageous then weekly therapy? I never want to look back on the time that we spent when he is this age and have regret. I want to set him up for success.. Decisions, decisions...

Mr. Independent

We have looked forward to our boy getting older, bigger, learning new things... People say not to rush the times because their childhood goes so fast. I have never wanted to rush time but Landon accomplishing new skills and getting bigger means, to us, that he is thriving and his body is healthier... Our little guy running around full of energy means not just that he is being a toddler, but that his electrolytes are within a normal range and that the Cystagon is doing its job. We feel so blessed to watch Landon grow, change and learn right before our eyes. He is becoming more independent... Oh yes, independent. I didn't expect, at the age of two, that he would want to do his own meds and feed. It started by insisting on shaking the formula in the bottle before I poured it in the bag.. Then he liked to help me press down on the syringe to release medicine in the tube.. Now he wants to disconnect and connect the tube from his Mic Key button. He releases the opening on the side where medicine gets distributed. He sits with a syringe and carefully places it in the opening. You can see why we avoid giving him the plastic syringe in his bed whe. We can't supervise, even when he insists, because his attempts have been successful leading to wet sheets and jammies at night. Is it sad that he is so used to all of this? I used to think so but not so much now... I want Landon to learn to manage his disease and what comes along with it as he gets older. And this is a great start. It makes life a bit more interesting for Jimmy and I!

The results are in...

I could just shout from the roof top, I am so excited! Today, we took Landon to have an X-ray done. You may or may not know that he was diagnosed with Rickets when the diagnosis of Cystinosis came. His phosphorus levels were extremely low and phosphorus is what promotes bone health so his bones weren't in great shape... At his last nephrology appointment, they said that we should have the X-ray done to check to see how his bones look now that he has been treated for over a year. Dr. Nyguyen called this afternoon (yes, only hours after we got the X-ray)and said that the difference between the two X-rays were like night and day!! His bones look wonderful!! We spent time talking about some other med changes, additions etc.. At this point, he is doing well, so a lot of what we spoke about today was to be proactive. For example, we discussed increasing the dose of Cystagon that Landon is taking to see how much of a dose he can tolerate. This came from some case studies that Dr. Nguyen read about patients in Europe who take as much Cystagon as they can tolerate (rather than basing it on body weight alone)and there have been reports of WBC levels at .4-.5. Our goal is to keep the level below 1 so to get it to half of that would be incredible! Since Landon really seems to tolerate his meds well, I feel comfortable to experiment a bit to see how much his little belly can tolerate. I also asked her about this little peanut that is growing inside of me now. I may or may not have mentioned that we chose not to move forward with prenatal testing. We will find out after this little one is born if he/she has Cystinosis (by the way, we hope to find out at the end of this month what the sex is, yippee!!). I inquired about the protocol for testing this baby (when will it occur, how)... The baby will be tested the same way Landon was between 2 and 4 weeks of age. They will take blood and send it to the only lab in the US that reads these tests which is located in California. The results generally take a couple of weeks to come back (although we got Landon's back in 10 days as a result of very persistent doctors). They will also perform a genetic test, as they did with Landon, to determine the mutation. The genetic test isn't absolutely necessary and many with Cystinosis have never had this done, but I would like to do it if we have the opportunity. If this peanut has Cystinosis, he/she will not need a feeding tube right away and will not have to be put on Cystagon and supplements right away. It really just depends on electrolyte and cystine levels. The plus for this kiddo is that we will know at a VERY early age so we can begin treatment right away and hopefully not have to worry about Rickets and bone health in the same way that we did with Landon. Only time will tell..

Summer Fun!

I have been meaning to post but it keeps slipping my mind. We spent the week, last week, at the beach in Ocean City, MD. Landon did incredibly well being away from home and a bit off of his routine. There is no doubt that he thrives on it but it's nice to know that he is still his sweet, silly self when we don't totally stick with it. He woke up each morning to a condo full of people he loved who were ready to give him their full attention. What else could a little boy ask for? He slept well at night and napped well so my anxiety about that was put to rest... He did better at the beach and with the water and sand than I expected and even went into the swimming pool. I have to say that he was most comfortable with grandma in the water. Jimmy and I were so pleased and so proud of our big boy. We have one more vacation to look forward to. Landon is going to attend his first concert this month, the Wiggles, and we are going to go to Hershey Park. It has been a great summe and our boy is getting bigger and doing and saying more all the time! He now weighs 22lbs! And the best thing is that he is beginning to eat and swallow so much better. I mentioned before that he put lots of food in his mouth a d would chew it but then spit it out. Jimmy and I have decided to no longer accept him spitting food out. It's just not an option. We remind him to take small bites, to chew and to swallow.. We offer him a drink in between bites and he had had much more success in swallowing! Now, we only started doing this when we noticed him swallowing more food on his own but we have set expectations now and it seems to have helped. The feeding tube is still necessary and we don't plan on weaning him from it anytime soon but this is huge progress! He takes in about 1200 calories from formula each day which promotes growth and the extra calories from food is a big bonus. At this rate he should average about a pound a month in weight gain. He was sick a few times this summer which knocked him back a bit but he has done really rally well overall. At the end of this month, he has an appointment at the Childrens Institute with a feeding team. It is a local rehabilitation facility for children. He has made lots of progress but I think their input and feedback will be helpful. So you see, lots of good and fun things going on. My sister sent me a video of Landon when he was just beginning to walk which was about 9 months ago and it melted my heart and made me so proud. He . He had grown and developed so much in that period of time. I could not be more proud. I just love being his mom and watching him grow. I wi try to post some pictures later! Thats all for now!

Smarty Pants

Landon has a new "trick..." Jimmy reported it to me when I returned home from a 10 minute trip to Rite Aid and it happened again today. Landon asked me to eat but his Occuoational Therapist would be there in a few minutes so I told him to wait a minute. Minutes later and walks in the living room with a bag of salad in one hand and Ranch dressing in the other. Yes, he can open the refrigerator door by himself. Life just became a bit more complicated... Sometimes it hits me that I don't give my boy as much credit as I should although generally that really works in his favor. We have had an issue with the piece on his feeding tube which we unplug to give meds, becoming unplugged and leaking on his bed. I have changed the sheets countless times over the past 2 weeks. Tonight, I decided to put a piece of table over the opening in hopes to avoid another mess. Please note that I have not blamed Landon. We read stories, I hooked him up to his feed, gave meds and put on my trusty piece if tape. A certain little boy did not like the tape idea and loudly protested. Guilty maybe? He is such a sweet boy with a great disposition. He is silly and so much fun but he is becoming quite a little handful at times. And, I admit that I wouldn't have it any other way... Well, maybe sometimes . :0)

Busy Days

Busy, busy here in the Hartz household and all wonderful things! We took our first vacation last week to Cedar Point. It went better than expected in that Landon napped, slept and traveled well! We have such a great routine at home and mama is particularly persistent about keeping with that routine. Daddy is a little more willing to be flexible which worked out great for vacation. Our little guy particularly enjoyed the new animated dinosaur tour that we experienced. Rides? Not so much! Landon doesn't appreciate not being able to sit on our lap and he seems to know when it is not an option so was very unhappy. I love to ride and have visions of riding roller coasters with my boy as he gets older so I was admittedly a little bummed. But he is only two so I still have time to "encourage," right? This trip made me extra excited about our upcoming trips to the beach and to Hershey Park! Yesterday was our first annual Lots of Landon Golf Event. It was a great success and we are so grateful to our brother-in-law and his good friend who planned it. Jimmy and I learned so much!! There were 65 golfers there despite the record breaking 99 degree weather!! Everyone seemed to have a blast ands we were overwhelmed by the generosity of so many who have never met us or Landon along with our family and friends. There is already talk of next year's golf event!! I will post more about it with a link to pictures soon!! As you know, last month was the first anniversary of Landon's diagnosis. We have experienced lots of firsts over the past year. Around this time last year, we went to Jimmy's cousin's daughter's birthday party. We surprised everyone by going because Landon had just been discharged from his month long hospital stay. With some anxiety, we packed his meds and feeding tube and ventured out on our first outing with a little guy whose special needs we were still getting used to. We realized that day that nothing would stop us from experiencing life and that this would all become normal for us. And, it has! We are a good team- Jimmy and I have always said that. And we are surrounded by incredible people!! We are so blessed... Landon is so blessed... And this little peanut that will join us in January will be just as blessed...

Poor Boy

Oh my poor boy... It began on Sunday. We were having a great day celebrating the wonderful daddies in our lives but we realized around dinner time that something was off with Landon. He was tired, over heated, a bit lethargic and felt feverish. We got him home and he vomited as soon as I hooked him up to his nightly feed. We replaced his milk with Pedialyte and hoped for the best. It was a rough night and Monday morning I called his nephrologist. Dehydration is not good for anyone but can be very bad for a kid like Landon. I packed our bags, made some phone calls and prepared to go to Children's ER. But then, he seemed to get some spunk back do I attempted Pedialyte again. He kept it down so his nephrologist gave some recommendations and I decided to try to keep him at home. The next few days were spent with lots of clean up, interrupted sleep and cuddling but he began to seem better. Then the cough, sneezing, runny nose and congestion began.. So that's where we are... Very limited formula and cautiously giving meds.. This too shall pass, right? :0) He is such a trooper and such a funny little boy. He is learning to cover his mouth when he coughs and sneezes. He wipes his nose with Kleenex. He makes me laugh! We had a great visit with his nephrologist today. We at so blessed to have such incredible doctors taking care of our boy- all of them! His kidneys continue to function as well as any child his age. His cystine level was at 1.2 and we want to keep it below 1 so once he recovers from the sickness, we will increase his dose by 25mg. He is consistently growing and gaining weight and has actually grown over 2 inches in the past 3 months. Wow, right?! There are a couple things that they want to check- X rays to see how his bones look and if his rickets is under control and copper levels. Apparently there is a correlation between increased copper levels and being on too high of a dose of Cystagon. So there are some updates. We have severally vacations planned so hopefully our boy gets healthy again so we can enjoy the summer! Oh and one final note- the Lots of Love for Landon Golf Event is scheduled for July 6th. If you do not golf, we have dinner and a Chinese Auction to follow. Dinner is $25 per person and will start around 5pm. I hope you can join us! E-mail me at LaurenLHartz@gmail.com if you would like to join us!

Special Needs

A little while back I posted about a great life lesson that I witness while watching Barney with Landon. He is still a big Barney fan, by the way.. Well today, Jimmy asked me if I saw the episode of Barney with the little girl who is shy. I told him that I saw it for only a moment but asked what it's about. He was watching it with Landon and said that there is a little girl who is very shy. Baby Bop (one of the characters for those who don't watch the show) continues to try to get this little girl to play with her. The little girl clings to her mom and the mom continues to comfort her. The girl begins to warm up to Baby Bop after some time and the mom confides in Barney that her daughter has some special needs and that it's hard for her at times. I told Jimmy that I had seen that conversation but did not know what the special needs were. They didn't say, he told me.. Then it clicked for me (it took longer than it should have, but I will blame that on morning sickness and being fatique!)... The message was that disabilities and special needs are not always visible and that it is important to be understanding. Obviously I thought of our sweet boy. He can be very shy and as I have mentioned, extremely cautious and anxious in certain situations. Do I blame Cystinosis? Not necessarily, but Landon has been through lots of things that most kids his eyes have not experienced and certainly not on a regular basis (countless blood draws for example)... So, some of his uncertainty and anxiety could be that it is merely his temperament, but in some ways, I imagine that he is affected by the pain and discomfort that he has experienced. Today we took him to a local spray park. It was a great place and we look forward to going again, but our little guy clung to us with every ounce of strength he has... We encourage him and we push a bit for him to try things, but we respect his wishes for the most part. So, we did carry him around that spray park. You may be thinking that plenty of children who do not have an illness respond the same way to new situations, and I know that. I do not blame Cystinosis for everything. But there will be times when Landon's life experiences and this disease will serve as a barrier for him. My hope is that the world will treat him as Baby Bop treated the little girl- with empathy and kindness.

Family of Four

I feel okay to put this in writing- Landon is going to be a big brother! Jimmy and I saw the heart beat for the first time today. Very cool and a little unreal... We will be welcoming this baby at the end of I posted a while back about my desire to add to our family. It was a very difficult decision that Jimmy and I carefully thought out since shortly after Landon was diagnosed. At first we both said absolutely not. We could never go through, nor put another child through, the drama that we all experienced a year ago this month. But life has calmed down and we have adjusted to our new norm. And we are loving life! There is a 25% chance that this little peanut has Cystinosis too. If so, it means that he/she and Landon will understand each other in a way that none of us ever will... If not, wonderful! We are at peace with it- either way... We are so so blessed!!

The Big Weekend Away

What an incredible weekend! Jimmy and Landon managed well without me and I survived my first nights away from my baby boy. I flew to Atlanta on Friday to participate in a Patient Feedback Session held by a marketing group who works closely with the pharmaceutical group, Raptor, that created the 12 hour drug that will, hopefully be approved, to treat Cystinosis. There was a very small group of caregivers and preteens/teens/adults with Cystinosis. It was my first opportunity to meet anyone with Cystinosis in person. I don't know why I was asked to join the group but I will tell you, I feel so blessed to have had the opportunity. I will also say that it makes it even more important to me, for our family, to attend a conference in the near future. I had the opportunity to share Landon's story, our story with people who totally get it. I cannot tell you how it feels to share something about Landon and his behaviors and witness that all knowing look of another parents face, whether they are parenting am almost 2 year old or a 16 year old. I am even more excited about the possibility of this 12 hour drug, RP103, being approved by the FDA. I am even more optimistic about my baby's future. I feel even more empowered as a parent with a child with special needs. Because of the Cystinosis community, I am able to work as a partnership with Landon's amazing doctors rather than being totally dependent on them for information. It's a great feeling. I was also reminded that there are incredibly kind and compassionate people in very important positions who are committed to improving the quality of life of people in this community. How awesome is that? The people who work for the marketing and pharmaceutical group have been to the Cystinosis conferences. They sat with us and talked about our kids, told us about their lives and families, about their passions and asked us about ours. I cried once (good tears) and laughed a whole lot. So, I am better informed, full of hope and had a blast!

Baby No More..

I haven't posted in so long, my goodness!! There is a little 2 year old in our house that is keeping us very busy.. Our days consist of a walk in the morning while Landon is getting a feed; either therapy (includes Physical Therapy, Occupational Therapy, Speech Therapy or Nutrition), errands or playing outside, nap; more playing outside or errands, Daddy comes home- we eat dinner; either go for a walk or play with the neighborhood kids at the park and then bed.. I love every moment of it!! We have such a little boy now. There is no existence of baby in Landon anymore. It's a teeny bit sad, but so exciting! I love that he is growing and thriving so well!!! He wants to walk and walk and walk and walk and play and play and climb and climb... He keeps me so busy!! I think I have mentioned this before but he is such a copy cat!! He imitates EVERYTHING, particularly Jimmy. His energy level goes from about 8 before Jimmy gets home to a 10+. He hears the garage door open or sees Jimmy coming up the walkway and he yells "Dayyeeeeeeeee!!" He runs to Jimmy and shortly after begins his famous "See, see.." He pulls him by the finger and wants him to "see" something which usually is his train table or race track in the play room. It's the funniest thing! Our newest milestone is that he sits at the table by himself for meals (not at the high chair and not on a booster seat). He absolutely refuses to sit in the booster seat. It's comical because his chin barely reaches the table, but he does a great job of sitting there and has been eating fairly well. His favorites are angel hair noodles with red sauce or italian dressing on it, and almost anything with Ranch dressing. He has taken a liking to Diary Queen soft serve vanilla cones. He and I share a cone at least once a week. =0) He usually eats the scoop of ice cream and leaves me with a soggy cone and the ice cream in the cone. So, I am doing something that is a pretty big deal this weekend. I am going away, by myself, to Atlanta GA for the weekend. I leave tomorrow (Friday morning) and will be home Sunday evening. I will share more about what I am going for after I return. Nothing secretive, I just don't know much about what we will be doing quite yet. I am excited, but understandably a bit anxious to leave my little man for the weekend. Jimmy knows exactly what to do and is well prepared to handle any situation that arises, but I have never been away from him overnight. My anxiety is purely because I will miss him. But it sounds like there is a fun guy weekend planned for my two loves. They are planning to make Landon's first visit to the Children's Museum which I know will be a ton of fun. And, the two of them just have a blast together whether it be a planned activity or running through the house, each with a hockey stick in hand, yelling and making a ton of noise. Well, I will certainly have some updates next week and promise to try to do a better job of keeping up with this blog!!

Blessings and Prayers

All is well in the Hartz household... We have been busy planning our summer and we're definitely going to make up for last summer! We will be off to Cedar Point in June, Ocean City in July and Hershey to attend a Wiggles concert with some of my great friends. Landon is a huge Wiggles fan and Jimmy and I are fans because our little guy loves them. We've had plenty of laughs as we watch him dance to the songs. On another note, less than one month ago the Cystinosis Research Foundation (CRF) hosted a conference in California. We did not attend although we were pretty bummed not to go. We had so much going on in April and I had a bit of anxiety about getting on a plane and traveling across the country with Landon. He's so well behaved but he's 2 and I'm not sure how he would handle such a big change in his routine. I should give him more credit than I do, but we decided that this year was not going to be the best year for us to go. There was lots of chatter amongst those in the Cystinosis FB Group about what was discussed and presented. I was so jealous! The rumors I heard are that there is some promising research coming out one of which is to offer better treatment for the eyes so hopefully people with Cystinosis will not have to put eye drops in their eyes every waking hour, or as often as possible. To think that Landon may go to school and we won't have to worry about putting eyes drops in his eyes as often as possible is mind blowing! I also heard a rumor that a study would begin recruiting that would look for a cure. A cure! Yes, a cure! I spoke with Nancy Stack (founder of the CRF) yesterday and she confirmed it and told me that information would be available later that evening about recruiting and who they are looking for. Now, this is not a study that Landon is eligible for and actually there is a very specific population that they are looking for.. But, oh my goodness, there is actually a study that is looking for a cure and human subjects are being recruited. Nancy assured me that there are wonderful studies to come. It's all just such a blessing. Landon is part of a very small, special population and to know that there are researchers committed to making the lives of Landon and all those with Cystinosis better, is amazing and such a blessing. This leads me to our upcoming fundraisers... There will be a golf event on July 6th. We are in search of golfers, donations for our Chinese Auction and business to sponsor holes. E-mail me for more information LaurenLHartz@gmail.com. We also plan to have our 2nd annual Lots of Love for Landon Halloween Fundraiser in October. We had a blast last year. I will provide additional information as it becomes available.

"It's not funny Landon..."

Two posts in one day? I'm on a roll, right?! Ok, discipline... Landon's Occupational Therapist was here this afternoon and Landon was in rare form. The poor kid is still feeling the effects of his most recent cold so hasn't been eating all that well. He is still get the same amount of formula- thank God he is tolerating it and I didn't have to cut back on the amount that he gets at all over the past week. Anyway, I presented Landon with several different kinds of food in hopes that he would eat something. He had pasta with marinara- nope, shredded cheese, nope- grapes, nope... He put bits of all of the options in his mouth but would chew and it spit it out. Then he started throwing his food on the floor. I, and the therapist, gave him a stern warning and told him that it is not funny and not okay to throw food. I then told him that he would have to pick up what he threw once he was done eating. I do it this way because I don't want to interrupt feeding and distract him (despite him creating his own distractions. So he finished, I got him out of his chair and he picked up a grape and instead of throwing it away, he put it in his mouth and walked away. I directed him back to the dining room and told him that he had to pick up the cracker that he threw. He then takes the grape from his mouth and throws it on the floor. I told him that he had one more chance to pick his food up or he would go in his room for a nap right now, without reading stories... He proceeded to throw himself on the floor. So, I picked him up, took him to his room and put him in his crib. He screamed for a few minutes and then fell asleep. I am getting a peek at the trials of being a parent. My sweet, little compliant boy tests me over and over again throughout the day... He is very much aware of what he's doing. It's not simply a little boy who wants to explore. He does things that he knows he is not allowed to with a big smile on his face and a laugh. He stands up on his chair and smiles at me then laughs when I remove the chair; he lays on the floor in the kitchen and drinks straight from the dog's bowl. When I tell him no, pick him up and tell him to stay out of the kitchen, he runs to the living room screaming and laughing. My response to him, many times throughout the day, is "that is not funny." It all makes me giggle now (well usually...) but I have to admit that I am a little fearful of how this little guy is going to challenge me when he's older!

Landonese

As I posted last time, Landon has words that he uses but I certainly wouldn't say that he is talking and communicating as well as a lot of other kids his age. This morning he came into the kitchen with his hockey stick. After trying to push Rocky with it as if Rocky was a ball, I told him that if he pushes Rocky with it again I will take it from him. I then told him to go find his ball. He walks into the living room only to come right back. Our conversation went something like this... Landon: idunnowamabais Me: you don't know where it is? Maybe in your play room? Landon: oh ya (ya sounding like ra ra, as in a cheerleader chant) I don't know how else to describe it! Now did he try to say, "I don't know where my ball is?" I don't know, but it sure sounded like that. Jimmy and I were laughing last night. He got a race track for his birthday and we were making the cars race and at the start, we would say "1,2,3 Gooo!!!" Landon walked around for the rest of the night and this morning saying, "Ahh, twoo, Ahh Gooo!!" Before we know it, we will be having real conversations that not just mommy and daddy understand. Until then, we'll be entertained by Landonese!

Chatterbox

Remember, no news is good news. Things have been going so well! Life has been crazy and busy though.

Landon woke today with a runny nose and sneezing. I pray that it doesn't get worse because I do not, repeat- do not, want to have to slow his feeds again. After our first session with our new nutritionist, we decided to tweak his feeds. We increases the rate at night so that he is taking in more formula while he sleeps and added 1 ounce to his 8am and 12pm feed. The goal was for him to take in the same amount of formula, because he is gaining weight beautifully, but to eliminate the 3rd bolus feed at 4pm. It worked and we have been on this new schedule for about a week. There should be no reason why he wouldn't continue to gain because he is getting the same amount of formula, but I will admit that I am anxious about his next weight check. It seems too easy now!! He is definitely showing more of an interest in eating and is taking in more! We are no where near not needing feeds but this is a big step in the right direction.

His verbal communication is coming along too! He is really trying to repeat words. Today he came to me and said "na na." I didn't understand so asked him to show me what he wants. He went to the kitchen and wanted me to open the refrigerator. I did and he looked confused and said "nana." Banana! He wanted a banana. They were not in the refrigerator which is why he was confused. I may have mentioned this before but his receptive language skills are great. He follows direction very well and understands what we say. Despite these leaps forward, I called his case manager today to try to initiate speech therapy. On one hand, I know that kids develop at their own pace and I have learned, if nothing else, patience when it comes to Landon reaching milestones. However, the muscles we use to talk are the same ones we use to chew. Landon has not used these muscles like most kids have so is at a disadvantage. He may do just fine but I want to be proactive.

Feeding and talking are our main updates right now. We had a great Easter and Landon's birthday party was a blast! It was at Gymboree and was fun and very physical. He participated in almost all of the activities which was a big deal! He does everything a this own pace and is always cautious and safe. He is such a funny little boy!

We have a lot more upcoming events so I will have a lot to post about! One event being a wedding in which Landon is the ring bearer (this is his 3rd!)...So long for now!!!

Happy Birthday Landon!!!!

It is 9pm and on this day, at the time, 2 years ago I was thanking God for epidurals and waiting for the epidural that I should not gave gotten to wear off. I found out, only minutes after I got the epidural, that I was 10cm dilated. I remember that night so vividly.

I knew from the moment that I found out I was pregnant that the baby inside me was very special. He was conceived only a couple of months after we found out that my sister-in-law had. breast cancer. It was something positive during a time of so much sadness and fear. If you are not aware, by the way, Jaclyn kicked cancers butt, just like we knew she would!

I never imagined the adventure and journey that we would go through with Landon. I have never experienced such love, such amazement, such fear, such sadness, such am anger. Second to love, pride is the biggest feeling I have when I look at my boy. When Landon was diagnosed, I had no idea what life would look like by the time he turned 2. I wish I would have... It would have made the beginning of this journey easier. Our boy walks, he climbs, he goes to school, he walks up and down steps with help, he asks me for cheese, pickles and Pringles.

I'm not so fearful and angry anymore. I'm excited to think about what this year will bring but I am eager to hold on and cherish every moment with him. Our new favorite game is to chase each other through the house yelling. And then I hide and pop out when he tries to find me. Who does that? A parent and child of course.

As I write this, I look over at a dozen balloons, just waiting for me to release them into his room so he can wake up in the morning to find them. This is what it'll about- celebrating... everything- Landon, how far he has come this year, how far we have come, all of our blessings..

Happy 2nd Birthday to our beautiful little boy!!

Memories

I have mentioned my April Birthday Club group before.. It is a group of mommies who logged onto the Baby Zone Online Community and selected the group who had due dates in April 2010. We are still friends. They make me think, challenge me and make me laugh and smile daily. Today one of my friends asked a question in regards to quality of time with our kiddos versus quantity of time. She then asked what we hope that our children remember... So, I started thinking and typing.

I believe in quality of time spent versus quantity. I spend about 10 hours a day, most days with Landon (12 hours of sleep at night and a 2 hour nap). I'm not completely present some of that time. I make phone calls... I prepare Thirty-One packets to send out... I vacuum and dust. I wash dishes. I play on Facebook. Most of it is a necessary part of the day (ok, maybe not Facebook). But the quality of time, I hope is what he remembers.

I hope he remembers the nap and bedtime stories, walking to do errands as he sits in his car, singing and dancing to the Wiggles and Barney in the living room with mommy and daddy, walks around the neighborhood and playing at the park after dinner in the nice weather, playing football, hockey, bowling and basketball in the house with daddy; putting our faces on each side of the glass in the bathtub and giggling, riding his first rides with mommy and daddy at Kidapooza...

There is no denying the blood work, countless doctor visits, future hospital stays, therapies but, I hope he sees these things as just part of the usual ups and downs of life. I hope that those moments that touch Jimmy and my heart so deeply are the things that he remembers...

Not yet sparkling blue eyes...

Landon had an appointment with his Opthamologist today. I prepared to hear that some crystals are present. My stomach was in knots all day. I know the days is coming but I don't yet feel ready for it yet- drops, the reminder that this disease is progressive and that no matter how compliant we are that this disease will affect his body. The doctor asked me to sit in the chair with Landon in my lap. He shined a light and looked with his instrument. Then he wanted to attempt to have Landon put his chin on the piece of the microscope designed for it, with his head against another piece. Good luck, I thought. Landon strategically placed his head in place and sat still long enough for the examination to be done. His eyes are clear! Thrilled! Thrilled! Thrilled!!

Are crystals the worst part of this disease? Certainly not. But again, their presence is a reminder that I don't want yet. We go back in 6 months unless I notice changes in his eyes (rubbing them, extra sensitivity, a cloudiness...). I am thankful for this day. I wont allow myself to be concerned about 6 months from now. That's a big deal for me.