Dear Me..

Dear Me Three Years Ago, Yes, you're devastated. You were told that your baby is not okay- he is sick. You have a demanding med schedule that is crucial to get him healthy. How am I ever going to manage all this you are wondering. Well guess what, you will. Every day won't be perfect. You will wake up at 5:00am every so often and realize that you didn't do his 2:00am meds. It's okay. The next night will be better. His phosphorus level is stubborn. It just won't get into the 4's- but it will. You are grieving over Landon's diagnosis and the fact that you won't have another baby, Landon won't have a brother or sister. Guess what- he will. Cystinosis won't scare you for very long. You can't believe that his doctors are consulting with you about what the next step should be. You don't know what Cystinosis is and certainly can't make decisions about how to treat it in your child. But yes, yes you can. You will learn what questions to ask. You will find supports in the Cystinosis community. Cystinosis will bless you in a lot of ways. Oh yeah- and it's okay for you to grieve, to get angry, to feel sad. You will do that over and over and over again- sometimes all in one day. You will tense up when the parent of a "healthy child" complains that their child won't eat, has a cold... They just don't get it. It's okay to feel that way, but you'll get over it. You are forever changed by the way, not for the bad, don't worry. You emotions are exaggerated and that won't really go away. You will get so excited that you can hardly contain yourself and when you feel sad or nervous, you will have to use those relaxation techniques that you learned about in grad school to calm down. And you know what, Cystinosis will not occupy your mind constantly. I promise it won't. He will be okay. The doctor was right in saying that he will be a normal kid with some bumps along the way. You vow to kick Cystinosis' butt. You will and so will Landon. Dear Me Two Years Ago, The doctors got Landon's meds figured out and he is getting healthier. You're still overwhelmed. His emotional health is so important too, and your baby is so anxious, so nervous, so timid. He is walking now! Yay! I know that he's really not eating yet, but keep at it. I know that all you want is to sit at the table or in a restaurant and to have him actually eat. He will. You have to be patient. You do a great job in managing his med schedule. Just accept the compliment when his doctors tell you that. You are doing a great job in making his life as normal as possible and you haven't let Cystinosis stand in the way of anything. Putting him in school was a good idea. When he goes to school by himself in the fall, it will be hard. He will not want you to leave. People will tell you just to go and that he will be okay. You will follow their advice after several weeks and will walk out leaving him to scream for you. The teachers will come to get you because he threw up. As you sit in the hallway, holding him with your head learning against his, you will cry. You will think of the years to come when you will sit at an IEP meeting educating the teachers and staff about Landon's disease and what special needs he has. You will think about explaining to the other children and parents what is different about him. Then you will pull yourself together and will follow your instincts. You will follow Landon's lead and one day he will say bye to you and will walk in the classroom by himself. You will be thrilled and it won't make you sad at all to see him separate from you. Oh and guess what- you are having another baby. Landon is going to be a big brother. Take that Cystinosis! Dear Me One Year Ago, He's come a long way. He's eating better, eating well actually! He is still very cautious and there are a lot of things that he just refuses to do. It makes you sad to see him afraid to go down a slide and to do other things that his peers do without a problem. Your trying not to blame everything on Cystinosis but man is it hard sometimes! He doesn't cry anymore when you go to the doctor and they try to get his height and weight. He actually cooperates happily. He's not so scared of people anymore. A substitute therapist came out to get him from the waiting room and he went back with her with no hesitation. He keeps growing consistently and is just about on the growth chart now! His health is great and the doctors credit you for that. You credit the doctors, genetics and research- that's all true, but please just accept the compliment. It will keep getting better. He will amaze you... Your life is beginning to feel normal. You are starting to trust that other people can care for Landon too. You may not believe this, but you will go back to work soon. It will be very part time but it will be perfect for you. You really won't believe this but you will go away for a weekend with Jimmy leaving the boys behind. You will depend on someone else to give meds and eye drops and Maw Maw will do just fine. Can you believe that he will be playing tball next year? Oh, and he will go to the park and will go right down the slide and will jump on that thing that spins and scream for you to push it faster and faster. Yep, he will. He won't need therapy anymore this time next year. He will start going once a month just for maintenance. You will think more about how to handle him refusing to clean up his toys and whether you should let him play bad guys and with swords than you will Cystinosis. Seriously. You will stop worrying about whether or not Landon can keep up with his friends next year because you will struggle to keep up with him. Oh and that anxiety and social stuff, don't worry about it. He'll still be cautious which you will appreciate but he will start making friends easily and will have a lot more confidence. Yours truly, Me today

Cystinosis, what?

Happy Summer Friends! These past couple of months have been pretty eventful! We went from celebrating a special little boy's 4th birthday to our first cruise to our 3rd Annual Lots of Love for Landon Golf Outing! There were close to 100 golfers at the event that was organized by two of my awesome brother in laws, Jason and Jason, along with our great friend Brad. These guys worked super hard to make it a success and that it was... The event raised over $17,000! Woohoo!!! Each year the events get better and better because we learn so much each time- I also speak of the Halloween party that we have in November. It felt well organized and we have more volunteers each year. Landon and Jordan were present the whole day thanks to the watchful eyes of their grandparents. Landon is becoming much more comfortable in front of people and around people so can be quite a little ham now. Landon had an appointment with his nephrologist a couple of weeks ago. His electrolytes looked great and were within a normal, healthy range. He is growing beautifully and she had nothing but good things to say. I learned today that his cystine level was .85 which is good because we want this number to stay under 1, but it has been .4 so for me, it didn't feel as good. A cool thing, I may have mentioned this, is that we have not increased any of his supplements or stomach medications in a very long time which is great because he is growing and it would make sense to have to increase the dose but we have not had to which indicates his good health. Cystagon will have to be increased as he grows so an increase does not mean anything bad for his health. I was told that Landon is on the higher end of the recommendation for his dose which is perfectly okay with me. I have been told by some parents with older kids that we should put Landon on the highest dose of Cystagon that he can tolerate and fortunately, Landon has not had any trouble tolerating the higher dose for his weight. If we increase, the new dose will be just slightly above what the recommendation is so Landon's doctor gave me the option of keeping him at his current dose or increasing and seeing how it goes. Her concern is not about side effects but how well he will tolerate it. I decided to give the higher dose a try but not to push it too much. So, we'll see how it goes. I learned from a friend that .4 is the level that someone who is a carrier of Cystinosis would have (Jimmy and I), so to have his level there makes me feel pretty happy. Hopefully we can get it back there. I have to tell you that my thoughts and challenges lately are more about the usual challenges of being a parent and worries that come along with that than Cystinosis. Lately, the challenging areas of life involve weaning Jordan from that darn bottle before nap and bed time and keeping him out of the refrigerator, garbage can and toilet; and handling the battles of cleaning up, using kind words and listening with Landon. I am grateful for this, although I may have to be reminded how good life is when I'm battling with children about taking naps and not destroying a room the moment I walk into another. I think we are in a transition from being parents of babies to being parents of little boys, of kids. It seems to a whole new territory, but I have to say that there are a whole lots of laughs and messages to Jimmy while he is at work that say, "Days like today make me happy to head off to work this evening," and "Dear God, make me a bird so I can fly far... far, far from here.." (Forest Gump if you didn't know). They are super cute though! Jordan is imitating a lot of words (thank you is my favorite) and loves to sing! I have the cutest video of him singing along with me to Old McDonald Had a Farm. He is officially a walker now and looks look a little old man running those chunky lil' legs around the house. He is just as kissable and lovey as they come! Landon is such a cool, little guy to be around! We have great conversation and I'm so impressed by what he remembers and how he interprets things. My explanations to questions now aren't as simple and brief as they used to be and he understands what I'm talking about. He is getting to be so big but still likes to be held and cuddled. The other day he told me that he has a secret for me and then whispers "I love you." He followed that by telling me that he misses me when I go to work. I wanted to tell him that mommy will never go to work again! I love watching him with his friends. Today he asked me who my friends are and I found myself identifying my friends by who their child is... Both boys notice and remember things just like Jimmy does which worries me because I realize that I probably don't stand a chance against them individually and certainly not as a whole. The dynamics in our family are starting to settle in and I'm learning that they are all either loving me like crazy or are teaming up to torment me. Either way, mommy gets a lot of attention in our household. I am truly a luck lady... =)

Updates and a story for your reading pleasure...

Please take my lack of posts as news that all is well and that we are super busy and living and enjoying life! So here are some individual updates on each of the boys: Landon: Landon is doing great! He is keeping us so busy with school and his friend's birthday parties. The kid has a much more active social life than either Jimmy or me. He is such a character. His latest phrases include, "c'mon Mommy! It be fun! in response to me telling him that he cannot go outside or he cannot help me with the dishes among other requests. I was frustrated a few days ago and told him that it is not funny and I am not laughing. He said, "sure you're happy Mommy!" He is such a good, sweet kid but boy is he quick and witty. He doesn't miss a beat either. He remembers things and notices things that fly right by me. He is a lot like Jimmy in that way. Boy, am I in for a treat as he gets older. We went to the doctor for his 4 year check up last week, yes my baby is now 4. He is 30lbs and 38" (both in the 10th percentile). He consistently is growing and gaining weight which is the important thing. His pediatrician is thrilled with how well he is doing. He loves school and next year will go 5 days a week for 2 1/2 hours in the morning. I can't believe it! It will help prepare him for kindergarten in which he will go 5 days a week, for a full day. *gulp* I cannot believe that he will be ready for that, but I think of the progress he has made in this last year and feel confident that it will be okay. Boy, am I going to miss him though. Five days a week in the fall already feels like a lot, but I have to say that he is excited to go to school every day. He has had the same teacher for two years and he adores her, so that will be a change, but she is wonderful and I think has helped him to really trust people and to feel safe and happy when he is away from us. Oh yeah- if I haven't posted this before, he is playing pre tball this year. Let me tell you... So darn cute!!! Jimmy is an assistant coach and boy is it fun to see the two of them do this together. He follows instruction well and seems to really enjoy it. The kids are so cute and the coach's, including "Coach Jim" are super patient and great with the kids. Lastly, Landon's birthday party with his friends has finally arrived. It's on Sunday and at a farm. The kids will have lunch, either pick strawberries or pot a plant, and will take a hay ride to see the farm animals. I'm excited because he loves farm animals and I think it will be lots of fun! Jordan: Jordan is reaching all kinds of milestones. He is walking. He is still kind of unsteady and mostly crawls, but he is taking the initiative to walk more and more and is standing independently a lot. We are going on a cruise at the end of May so my hope is that he is mostly walking by then but we'll see how that goes. We are phasing out the bottle and he is actually handling it pretty well. He had his 15 month check up last week is is 25lbs (50%) and I think 31" (90%)... I'm actually not convinced that he is going be a very big kid. I would be surprised if he stays at 90% but who knows. We call Jordan the "wrecking ball" and "Jordan Monster" if that gives you any idea as to what he is like. He is mischievous and is constantly into something but he is also super sweet and affectionate. Landon was much more laid back and still is pretty laid back. Jordan, not so much... He has some words now "dada, mama, ball, hi, yeah, no..." He can open the refrigerator and cupboards which makes life interesting and he is quick to get up the steps and wants to go up and down over and over again. He is so funny, has such a great laugh and a face that makes you want to squeeze him. Jordan and I will be doing the First Experience class at the preschool that Landon goes to, in the fall. I loved doing it with Landon and I'm excited to do it with Jordan. These boys are getting so big, so fast. It's fun to see and hear the boys play together. They are so silly, so noisy and so funny together! They fight and agitate each other already! Jimmy warns me about what is to come. He tells me that they are loud and that they are going to fight and will be physical. I'm getting better at letting them wrestle around as long as both want to do it. I know that this is only the beginning of me yelling for them to knock it off and to lower their voices. Oh, I have to share one story. Landon got a fish tank and fish as a birthday present. We put the tank on his dresser high enough that he could not take the lid off or get into trouble, so we thought.. Landon was in his room for quiet time one day and I went in to tell him that he could come out. I found the lid of his fish tank off the top and next to the tank of the dresser. I looked in to find 7-8 trains from his train table in the tank. I panicked for a minute but quickly rescued the trains from the tank and prayed that he didn't kill the fish. He didn't and we decided to move the tank into the kitchen where it would be better supervised. We noticed the tank was looking a little dirty and as days went on it looked even more so we decided to clean it. Jimmy cleaned it as I finished coloring Easter eggs with Landon and got him ready for bed. Jimmy kept saying how bad it smelled and I agreed that that it did but didn't think much of it. As Jimmy was cleaning it, he found a surprise. It was, well, poop. Yes, fish poop, but this was not fish poop. It was human poop- from a certain little boy. We were stunned! I asked Landon if he put poop in his fish tank and he said that he did. I asked him what happened and his response was, "I poop in my bed. I pick it up, and I throoooowwwwww it in the fish tank as he demonstrated how he threw it." Of course I told him that it's not okay to do that... that he needs to tell us if he has to poop and if he does poop.. that he could have really hurt the fishies... blah, blah, blah... So, there it is folks... Yep, he did.. Now you can close your mouth and stop laughing.

Our Many Updates...

Wow, I haven't updated in a while!! Oh where to begin... Landon had his nephrology and opthamology appointments several weeks ago. Both appointments went so well! Landon's electrolytes all were in a normal range and we cut back a bit on his sodium. The really awesome thing is, and I often forget this, that Landon is getting taller and gaining weight (he is a little over 30lbs now) and we have not had to increase his medication based on his weight. I take that back- we have increased his thyroid medicine because that was just a bit out of range and his Cystagon but both of those are to be expected. It's really great that we haven't had to increase his supplements because he is getting bigger. We actually keep looking for opportunities to cut some of his medicines back and have been able to do that on several occasions. His eye appointment went just as well. I really do adore his doctors. I don't know how we were so blessed with all of these extraordinary doctors and therapists who treat Landon as if he were their own and who are super smart and good at their jobs. Anyway, his opthamologist was so pleased with what he saw as far as the crystals in Landon's eyes. He had another physician come to check out the crystals and she was very intrigued. I almost asked if I could check them out but I didn't want Landon to have to cooperate a moment more than he already was because he did so well during the appointment. He listened and followed instruction SO well. I am so proud of him. Our other good news was that Landon's eye sight is great. At our last visit, there was some concern that his eye sight may not be good. Glasses wouldn't be the worst thing in the world, by far, and he would be stinkin' cute in glasses but I have to admit that it's something I'm glad we don't have to worry about right now. The chances of him needing glasses, well both of our boys needing them, is pretty good since Jimmy and I both have not so great eye sight. Oh yeah- so we learned that the crystals around about the same, in amount, as the last visit. This bummed me out a bit because I was hoping to hear that they decreased, but the doctor said that if the crystals remain as they are now that he will be thrilled. He was very happy to hear that Landon is not experiencing any discomfort or light sensitivity yet. What else? Well, Landon had his first pre t-ball practice this weekend. Yes, my baby is playing sports. It was kind of emotional, actually very emotional, for me. Lots of thoughts and emotions came over me as I watched him carry his ball to the car with Jimmy. Jimmy said that he is the smallest kind on the team, although there is one little girl who is close to his size. Our hope for this is simply that he will begin to learn how to be part of a team and follow instruction. The bonus was that he hit the ball of of the tee. I'm so excited to see him play! I remember learning about Cystinosis and being so scared of what our life would look like. At the time, the doctor assured me that Landon would be able to play sports and go to school... And here we are... In other news, my baby will be 4 in a little over a week. Yes, 4. I can't believe it. The "baby" in him is barely visible anymore. I can't necessarily say that I feel sad because he has been through so much and I'm so excited for where he is now as far as his health. And it's so cool to be the mom of a preschooler, although sometimes I feel totally unprepared for the task. This evening Landon, Jimmy and I watched a movie and then Landon and I played Memory (he beat me, legitimately) and then we played a board game. How cool is that?! Guess who else is growing up? Jordan. Oh Jordan.. Our 14 month old is starting to take some steps. I love seeing how proud he is as he stands independently. He has a bunch of other tricks too... He has hand motions for the songs "Wheels on the Bus" and "Pat a Cake." He loves when we sing and dance. He gets the biggest smile on his face and he absolutely melts my heart. He raises his hands to the air when we say, "how big is Jordan?" He is becoming more affectionate now. Before he wouldn't sit still long enough to give hugs but now he loves being close to us and gives big hugs and sometimes says, "awwww..." as he does it. He has also started giving kisses with his mouth wide open. Landon never did the open mouth kisses and I have to say, it cracks me up. It is so easy to make him laugh and he often laughs so loud and so hard that it makes us laugh. He and Landon were playing a game of "toss the teddy bear" in the back seat today and he was hysterical. I forgot how much fun this age is.. It seems like he is learning and growing so quickly. Oh I just adore these two little boys...

Rules are Rules

My boys rough house. I grew up with a sister and we didn't do much of that so this is foreign territory for me. Landon has had his share of visits to time out for moving past rough housing and pushing or hitting his brother. Jordan is an "in your face" kind of kid but it's not ok for them to try to hurt one another. Today I was in the kitchen preparing lunch and heard Landon cry, a real cry, an I'm hurt cry. I went to check and Landon came to me really upset. I cuddles him for a bit before he could settle enough to tell me what happened. Jordan hit him on the cheek with a wooden fire truck. For Landon's benefit, I told Jordan that it's not ok to hit and that he hurt Landon. He grinned reminding me that he doesn't understand. It was too late to address it at that point but I wanted Landon to see me address Jordan like I do him. Landon told me that Jordan should sit in time out. I explained that he doesn't understand but Landon insisted and suggested the high chair to keep him still. Ok, I will go with it. So, I sat Jordan in his seat and told him why he was in time out. Landon wasn't done. "Mommy, the timer," he said. Of course.. So today, Jordan had his first time out and enjoyed every moment of it.

A Weekend Away..

Well, we did it! Jimmy and I took our first adult trip away from the kids ever! We did leave Jordan with my mom when we went to the Cystinosis conference in April, but this was the first time both of us, away from both kids, who actually knew that we were away... They did great with my mom and a HUGE thank you to my mom for watching them. Landon's medical needs can be overwhelming to someone who doesn't do it every day, but my mom took care of it all without a problem. It's so nice to know that we can do this and not worry. Taking care of Landon's medical needs involves eye drops 4 times per day, formula through his G tube 4 times per day including once at 2:00am and add onto that entertaining a 3 and 1 year old for an entire weekend in a home that is not your own. And, we came home to a clean house and laundry done. She is a rock star! The weekend was great! We went with some great friends and Jimmy's brother and his wife. Great company, casinos, a fancy dinner, adult beverages, beautiful Niagara Falls, and sleeping in until late morning made it a very pleasant weekend! The weather was cold, cold, cold and felt colder than even the coldest days that we have had here in Pittsburgh lately- maybe it was because we spent a bit more time outdoors than we did when it was cold here. I kept thinking, though, how much Landon (because it doesn't take a whole lots to get Jordan excited yet) would have loved certain things- lunch at the Rainforest Cafe, the sight of the falls...). We agreed that it will be worth a short visit this summer with the boys. =)

When Did This Happen?

Over the past few weeks I have had the conversation, with several different mom's, about how incredible it is that our babies are no longer babies- they are big kids. Landon's birthday in April, his 4th birthday, seems to be the first in which he just cannot, cannot be seen as a baby anymore. Technically this is his 3rd year in preschool (first year was the Mommy and Me class) but I still didn't really consider him a preschooler. He was a toddler in my eyes. But 4- he is a preschooler with one more year of preschool left before I put him on the bus and send him off to kindergarten from 8:30am (when he steps on the bus) until 4:15pm (when he steps off the bus). I'm taking deep breaths as I type that... I had my first parent/teacher conference last week. I got lots of great feedback. He doesn't like to clean up tries to weasel out of it like he does at home sometimes, but that's certainly something we can work on. He also plays helpless at times but his teacher is on to him and he tells her everything that goes on it home. I guess we can't get away with much. He knows all of his shapes, he knows of all his colors, he is trying to write his name, he's working on using scissors... He is potty trained and does everything required completely on his own. He is very friendly and very social. He has some good buddies that he plays well with and makes attempts to play with a cute little girl in his class but she hasn't taken the bait yet =). "He's a pleasure and we just love him." Those are certainly words that I appreciate hearing as a parent. His teacher had him last year so went through a whole lots of transitions with him. When he started in her class, at not even 2 1/2 years old, he refused to let me leave and cried hysterically when I left him (to the point that he threw up one day and I almost had to take him home). He barely ate anything at all and the few bites he did take, he would pocket and she would have to have him spit it out. Now, he runs in the room barely saying bye to me and she said he often asks for seconds of his snack. She also mentioned that he enjoys showing off his belly and G tube every so often and the other kids are quite intrigued by it. When the kids have their senses and body parts lesson, I am going to go to his class and talk to them about what his G tube is and why he has it. And what really moved me to post this was this evening-- it seems like all of a sudden he wants to be so independent and he actually is able to do the things that he says he wants to. Our toilet is high so his little potty sits on the floor of our bathroom so he can go independently. He wanted to use the big potty so asked me to go in with him. I watched as he pulled his pants down and put the seat on top of our toilet. I moved the stool, that he uses to wash his hands, over to the toilet and asked if he can climb up and sit down himself. He grinned and did it without must hesitation. He was so proud. He went potty (including #2 which made me happy because he tends to save poop for when I put a diaper on him at nap time- he actually hasn't pooped on the potty in months) and then pulled toilet paper off and wanted to wipe himself. He really did a good job. He flushed the toilet, put the lid down, moved his stool over to the sink and washed his hands. Then when it came time to brush his teeth he wanted to get his tooth brush on his own (I had to move it to a place where he can reach) and took a stab at brushing his teeth by himself with help from me to be sure he did it well enough. Then he rinsed the brush off and put it back. I really love this age for so many reasons- he has a great imagination, is so eager to learn and is so much fun. But I have been in this role of being a mom of a baby, then two babies. Being the mom of a preschooler seems so odd and unfamiliar although exciting and fun. The conversations we have and the things that he understands are so strange and incredible. I just have found myself wondering a lot of the past few weeks- when did all of this happen?