Our Healthy Boy

Today we had our visit with the Nephrology department at Children's Hospital. We were at the hospital just a few days ago for blood work. For Landon, at this point, blood work is the worst part of Cystinosis. He hates it. I'm always honest with him about where we are going. I don't jump to tell him but when he asks where we are going, I tell him. I will always be honest with him and I say I and not we, in referring to Jimmy, because I can only speak for myself and I'm the primary person who handles doctor and hospital visits since I'm home with the boys. Half of the 30 minute car ride to the hospital was filled with tears. Landon and I talk a lot about feelings and how to cope- his mom is a therapist. We talk openly about being afraid and that it's okay to feel that way and we talk about what exactly happens when you get blood work done (or shots). I told him that I don't like to look when they put the needle in my arm and that's what he tried this time. A big part of me wants to do whatever I can to make it easier for him but then there is a part of me that just wants to accept that it's a sucky part of Cystinosis (or life) and allow him to sit with those feelings. We don't always have to fix it and make it better. Sometimes it just is... He asked me to tell the phlebotomist (he calls all medical people doctors) to please be very gentle with him. I assured him I would but he walked in when they called his name and told the two ladies in there himself. The phlebotomist promised and she certainly did her best. He cried, I gave him lots of hugs and told him that he was very brave. The secretary asked him, as we left, if she was gentle. Landon responded "yes, she was gentle. It just hurt a little bit." When I told Landon that we were going to the hospital to see the doctor today, he quickly asked if he needed a shot. I promised him that he would not need a shot. One time I promised this and we were told at the appointment that we could get our blood work done after the appointment. We went back another day because I just could not break a promise if I could help it. Anyway, Landon confidently walked past the lab and announced to two employees standing in front of the door, "I don't need a shot today." I also have to tell you that he had a hat shaped like a monkey that he wore. He told me in the car that he would wear his hat in the hospital because "it will make people laugh and they will be happy." We are so blessed with such a special kid. That comment represents who Landon is so well. So the appointment.. I have to say that I actually really enjoy going to Landon's nephrology appointments. We just adore his nephrologist. She was introduced to us from the very day we entered the hospital and Landon was diagnosed 3 1/2 years ago. She was one of the doctors who entered the room and confirmed his diagnosis and the one who called me to tell me that Jordan does not have it. She is currently on maternity leave so we saw Dr. Moritz who knows Cystinosis well and has treated patients for many years. He is a great guy and I always enjoy meeting with him. They provided me with a copy of Landon's lab results and Dr. Moritz went line by line discussing each number. With the exception of Landon's thyroid number (which was a bit high) everything fell in the normal range (normal for any 4 year old). This has been the trend for the last couple of years which is something that makes us incredibly happy. As I spoke longer with Dr. Moritz, I realized how well Landon really is doing. The expectation is that as Landon gets taller and gains weight, his medicine will need adjusted, right? Makes sense. There are three drugs that he takes to replace what he loses in his urine (potassim, phosphorus etc). He takes two drugs to help with belly issues (the meds are tough on his stomach). Cystagon which keeps his cystine level at a safe level to slow down the destruction of his body's cells. He takes a drug for hypothyroidism and one to promote bone health. The topic of discussion this afternoon was the drugs that replace what he loses in his urine. His electrolytes were all within a normal range which is great but this nephrology team is always thinking ahead and taking the extra step so we are cutting back on two out of the three drugs that replace his electrolytes and are getting rid of one altogether. This is great news because, as Dr. Mortiz stated, it means that he is improving. He doesn't require the extent of medical intervention that he once did. We struggled for a long time to get Landon's phosphorus level in the 4's; today it was 5.7. The doctor examined him- no sign of Rickets in his ribs and when Dr. Mortiz straightened his arms out he was surprised to see them actually bend all the way to the opposite direction and that he is really flexible. We plan to have a couple of tests done, an ultrasound and bone density test, to confirm his bone health and that his bladder is healthy. All in all, it was a wonderful appointment and a reminder of how blessed we are that our boy is doing so well.

Fall Fun!

I was recently talking with a friend about coping in difficult times. I told her that I have always viewed blogging as therapy for me. It started because we were in the hospital with Landon and wanted to share the latest news and information and didn't have the time, nor the energy, to provide information over and over again. But then, it became my voice. There were really tough days and blogging helped me to stay positive and optimistic because I wanted to reassure all of you that it will be okay and that we were okay even if it wasn't totally true in that moment. I told my friend that when I post often, it's probably because I am going through something emotionally and it's my opportunity to get some of my thoughts out in the open. So, I say all this to say that things are going so well... The boys are keeping Jimmy and I very busy. Our weekends have been busy with fun events- weddings, birthday parties, meet ups with friends and yesterday was a trip to our first fall festival of the year. Landon picked out a pumpkin as Jordan consistently ran the opposite direction of where ever we were going. The climbed up into an old fire truck, went down a slide with their dad in a burlap sack, rode on a hay ride, ate apples, went into a butterfly tent and a butterfly sat on Landon's finger- Jordan doesn't quite understand the meaning of gentle hands yet so he just watched. They saw and talked to sheep, a pig, chickens, ducks and goats and then cried for half of the trip home out of exhaustion and sadness that it was over. Several times during this trip, I thought to myself how awesome it is to have these two little boys and how much I love being with them. Landon went back to school, 4 days a week this year, and loves it. He has a new teacher and has met some new friends in his class. He told me that one boy in particular has nice hair and that it's down which was his way to tell me to stop putting gel and making his hair into a faux hawk. He humors me sometimes but for the most part he tells me to leave his hair alone. =( Jordan and I are getting more one on one time together now which is nice. But he really loves when we go pick his big brother up from school. They are such good buddies although they fight and agitate each other as much as they play. Jordan likes to pull on the back of Landon's shirt to pull him down and Landon often yells "Mommy, Jordan isn't sharing with me!," when Jordan is trying to play with Landon and whatever he is playing with. They make each other laugh and are becoming such great play buddies though and it warms my heart. So one additional thing that is keeping us pretty busy these days is the 4th Annual Lots of Love for Landon Halloween Party!! It is scheduled for November 1st and we are so excited!!! If you want to join us or want to make a general donation to the Cystinosis Research Foundation in honor of Landon and this event. Go to the link below. This one is to pay for your ticket using a credit card or to make a general donation with a credit card. https://www.cystinosisresearch.org/4th-annual-lots-love-landon-halloween-event/ This is for the Evite to rsvp for the event. http://www.evite.com/event/02D2DNAECW5FTUEUGEPEGK3JF4O6J4?gid=02D2DNAECW5FTUADEEPEGK3JF5Z63Y Contact me for any additional questions... Oh, and we have a Chinese Auction and door prizes as part of our event. If you are interested in donating a basket, prize or gift card we are so thankful!!! LaurenLHartz@gmail.com

Being Nice to Myself

"You put too much on your plate." "No wonder you forgot. You have so much going on?" These are phrases I hear from the people that love me when I make a mistake and then beat myself up about it. "You don't play with the boys enough. You need to set aside time for structured play and for free play with them." "Take them to play groups. It's great for socialization." "The laundry piled up. You need to do some every day." "The floors need cleaned and you need to get the pile cleared off the microwave." "Get your notes done early next week so you're not dropping them off late Thursday night!" "Keep track of your list better so you don't spend so much time at the grocery store." "Exercise!" "Why did you eat two banana muffins? Just eat one, or none!" "Go grocery shopping. Make that doctor appointment today, not tomorrow!" "It's dinner time and you only gave Landon eye drops twice." "You waited too long to call reorder Landon's prescription. You need to keep better track of that." "Put aside money for the boys preschool tuition." "Fax that, today!" "Buy those birthday presents. And, why didn't you send out thank you cards for the boys birthdays? People will think you are unappreciative!" "Don't yell at Landon when he isn't listening. See, why did you yell? You need to stay calm." "You need to watch Jordan carefully. He is going to get hurt because you weren't paying enough attention." "You gained back weight since vacation. You were doing so well then. Get yourself together!" If I talk to someone else like I talk to myself, they probably wouldn't want to be around me very much. This weekend I loaded the trunk of my car with items to take to my cousin's bridal shower. My sister closed the trunk and my purse happened to be in it. The car locked and I stood in panic because my only set of keys were in my purse, in the trunk. I turned on my "auto switch" so I wouldn't yell or cry out of frustration. Jimmy went to investigate and to try to solve my dilemma as I did deep breathing and zipped around the house fixing the boys lunch and telling myself to calm down. He called for me 10 minutes later and stood looking at me with my keys in his hands. I left the keys on the wall as I was loading the car. I sobbed. "I feel like such an idiot. Why do I do these things? How stupid." Of course, my eternal voices (which happened to be my husband and my sister at that moment), disagreed and assured me that it was a busy morning and that its an easy mistake. I was not quite so forgiving, but was able to calm down. I'm aware of my shortcomings. I acknowledge that... I'm working on treating myself better. I am. I always tell Landon that he needs to use kind words- that words hurt. I guess that's true even when speaking to yourself.

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?

Birthday Party

Well, the big birthday party is over. It happened on Saturday. So many things did not go as planned and Jimmy and I felt a lot of stress that day, to say the least, but when it comes down to it our baby turned 1, the people who we love were present to celebrate this milestone in Jordan's life, the kids (ours and others) seemed to have a blast and these things are what contributed to the party being just wonderful.

Put to the test..

This is the first moment I have had to relax from quite a chaotic morning. I say that this blog is my therapy so here it goes... Landon had a delay at school and since I was planning to pick him up a little early for his first dentist appointment, I decided not to send him to school. Landon's dentist appointment was scheduled at 11am which is about the time that Jordan wakes from a nap. The plan was to make a quick run to the grocery store at 9:30am and pray that Jordan would take his morning nap in the car. He did, one point for mommy, and once he woke I got both boys bundled with coats, hats, pulled the stroller out of the car, grabbed a blanket to wrap around Jordan since the weather is only in the single digits today and pushed Jordan in the stroller up a small hill to get to the front door from the parking lot while holding Landon because I wanted to get them inside as quickly as possible. Now, where is office where we need to be? The kind woman at the Pregnancy Resource Center informed me that the office I was looking for was upstairs but that I had to use the back parking lot because the only way up there was steps. I was so tempted to fold up the stroller and take the steps but was informed that there are several flights to walk up. So, back outside we go. I buckle the kids back into their seats, put the stroller and blanket back into the trunk and drink the car around to the back of the building. Get the kids back out and luckily this time we are close to the door so I carried Jordan, pushed the stroller (I needed to have some place to put Jordan if Landon had a hard time) and Landon walked into the dentist's office. We walked in the room to an empty waiting room with a secretary who looked as if I had several heads. I knew it wasn't a good sign. This was a pediatric dentist's office but not the right one. ***sigh*** I called the correct office to let them know that I was at the wrong place and to please give me an address as to where they were located. Apparently the insurance company did not have the correct information on the website. I ended the call with a new scheduled appointment feeling incredible frustrated. As I drove home, I called the office to see if we could get there shortly (by this point it was 11:05) if the dentist would still take us, he would. Yay! As I happily drove to the correct office, I realized a few things: the office is located on a busy road which meant that I would have to find parking, it's 7 degrees outside, and I do not have the double stroller. I found a parking lot because no one wants to see me parallel park on a good day, let alone a day when I'm feeling rushed, stressed and anxious. There was a small hill to walk up and a busy road to walk across. I knew that I was not going to move quickly pushing the stroller and carrying Landon all this way so had Landon stand on the stroller (where Jordan's feet touch) facing Jordan and to hug him. Landon does it to be silly but I thought it would serve another purpose this time. It did. It shield both boys' faces from the cold and got us inside pretty quickly, plus the boys laughed the whole time. We waited quite a while once we got into the dentist's office but I was so appreciative that they were still seeing us that I didn't mind. I had snacks and Jordan's milk and the room was filled with toys that kept the boys occupied. Then it was Landon's turn... They had a miniature chair for him to sit in which seemed pretty exciting at first. Once the napkin was clipped around his neck I saw on his face that he was nervous and scared. I asked him he was feeling excited and he told me yes, then I asked if he felt nervous and he said yes and put a big, fake smile on his face. I reminded him that it would not hurt and that the dentist was just going to make his teeth shiny and pretty. I told him that I was proud of him for sitting in the chair and that he was such a brave big boy. The dentist came in, and to my surprise, gave him a full cleaning. I really didn't know what to expect with a 3 year old, but he did it all. If I would have known this, I would have bet that Landon would not last the whole cleaning. It uncomfortable, there are tastes and sounds and feelings that are not pleasant. The dentist was so wonderful and guess what, my big boy made it through the entire cleaning and was SO cooperative! My eyes watered as I watched him because I was so proud of him. I would have been thrilled if he was unphased by it all and did it, but seeing that it was a struggle for him and that he had to use his coping skills to get himself through it and to allow the dentist to do his job made me so proud. The dentist said that he did such a good job and that kids aren't often cooperative during their first visit and that he was so cooperative. I responded that he was such a good boy as I hugged him tight and told him that I love him and that I am so proud of him for being so brave. It certainly was a chaotic morning, but situations like these serve as reminders that both of my boys are so good, so resilient and that I am so blessed. So, so blessed.

Blood Draws for Jordan

We got out of the house early today (early as in 8:40am) for an 8:45am blood draw for Jordan, yes Jordan not Landon. I have to tell you that I used to pride myself on being on time, even a bit early, for everything. Now, if I make it on time it is cause for celebration! Anyway, Landon asked where we were going so I told him that Jordan had to get a shot (I really don't know how to explain the difference between a shot and giving blood to a 3 year old) today but that Landon did not. I told him that it would be important for Landon to be extra nice and to help make his baby brother feel better because Jordan might cry because shots hurt for a moment but then it will stop hurting. Landon was up for the challenge. We began in a waiting room full of people in which Landon made it his duty to entertain. He counted, he danced, he talked loudly and looked around the room for reactions. He told me in a very clear, elevated voice that his "pee pee goes down" and "Mommy says, no touch Landon and it go down." Jordan was content to finish his bottle and then warmed up his arm by throwing the bottle across the room and then repeatedly smacked his big brother on the top of his head as Landon and the rest of the room laughed at him. The life of having two little boys, right? Jordan did great with his blood draw which by the way was just a standard check for a 1 year old apparently. He had his finger pricked and only cried because I had to hold him still. Landon told me that he was going to hold Jordan's feet since he could not hold his hand like we had discussed. He did so gently which actually distracted Jordan from not being able to get down. I just love these two boys. So, that was our morning.. A bit chaotic because Landon had therapy right after the blood draw but productive and all went well. Today was our monthly visit with Landon's nutritionist along with his feeding/speech therapist. Landon has been sick off and on since October so hasn't gained weight all that well because he is not consistently eating and taking in toddler formula as he usually does. Last visit, he gained less than a half of a pound in 6 weeks. Today she reported that he grew 1 inch and gained a little over 1 pound. Woohoo!!! It's funny because I noticed the other day that he stands several inches over the counter that is in the kitchen. He was doing his usual jumping around/break dancing and my heart stopped a few times because he kept getting close to the counter and I worried that he was going to smack his head. So I guess I knew that he was getting taller. Oh, and tomorrow is the day, our baby boy will be 1 year old!! This has been such a special, happy and incredible year! This time last year, I was preparing to be induced the next morning and hoping that I went into labor naturally that night. It was such an amazing time filled with excitement and a bit of anxiety. I was hoping that I would not need a C section and that all would go well with his birth. And I was anxious about how having another child would impact Landon. If I only knew then how wonderful it would be! Happy Birthday Jordan!! You have brought such joy to our lives and have completed our family. One last thing I want to add is for your thoughts and prayers for a young man in our Cystinosis community. I don't often mention people from our community in this blog because there are so many stories and I hate to focus on one as if the others aren't happening or aren't important, but this has really affected me. Bailey is a teenage boy who I met, along with his mom, the first time in Atlanta when I went to a focus group kind of thing a couple of years ago. They were both also at the conference that we went to last April. His mom is such an incredible and fun woman and Bailey is a sweet, kind of shy teenage boy. They learned that Bailey needed a transplant and Jessica, his mom, was prepared to donate her kidney. She learned that she could not donate as it got closer to the time when he needed it. She was devastated as was Bailey. He was very afraid to have to go on dialysis. While at the April conference, we met another family, the Jordan's who were the parents of Joey who also has Cystinosis. Joey and Bailey had become friends and actually look like they could be brothers. They didn't leave each other's side at the conference. The friendship and bond they had formed makes me smile to think about. Joey had received a transplant already, and I actually just learned that he had received a cadaver kidney and is doing very well. Well, when his mother Mary found out that Bailey needed a kidney and that Jessica could not donate her own she stepped up and went through the testing to find out if she is a match. She was! So, today she went through surgery to have her kidney removed and is donating it to her son's friend. Bailey is in surgery as I type this. Beautiful story, right? As I said, I don't often post these stories because there are lots. Another young lady in the Cystinosis community received a cadaver kidney last week. These stories happen a lot and are all beautiful stories to relay, but Bailey really pulls at my heart strings and I imagine that it's partly because I have gotten to know him and his mom and think that they are wonderful, strong and loving people. I will end this by asking for a few extra thoughts and prayers for them.

Makeover!

No, not me, but this blog. I was thinking... The focus of this blog for a long time has been Landon and Cystinosis. I don't post often because honestly, our lives aren't about Cystinosis and most of what I want to post has to do with the every day experiences of having two little boys and not about doctor appointments and continuous feedings at night and medicine and what labs look like... Yeah, periodically I have updates about those things, but for the most part, they don't happen anymore or not as much, and they are the same kind of updates you all have... The focus of this blog is going to be on on our lives, not just in relation to Cystinosis. I'm not so good at tracking milestones. I don't know when each of my boys got each tooth or the exact date they started to crawl, smile, stood up... I can give you a guestimate, but I'm not good at keeping track of those things. What I do like is to tell stories because I never want to forget the things they say or what they do. So here we begin with the tales of our lives with these sweet boys! Landon is funny in a silly, get your attention kinda way.. I told Jimmy, the other day, that I see the days ahead of him sitting at the table doing homework and me yelling at him to sit down and get his work done and that I'm not laughing at his antics. We have started doing "letter of the week" at our house. This is the first week so it has been the letter 'A.' Landon can identify each letter in the alphabet with no problem, and has since he has been about 2, but he doesn't know how to write many of the letters so we are working on that with him. He does well but of course is not always excited to sit and work on writing his letters. This morning he was playing on my phone with an App to help him to write letters and says, "Mommy, I not do A. I don't like A. I like B." It will be interesting this time next week to see if he still has such a love for the letter B. My mom was watching the boys the other night when I was working and Jimmy was at a work function. He was up late and my mom asked him several times if he was ready for bad as he watched a show on tv. She told me that after asking a few times Landon responded, "Maw Maw, don't talk to me anymore!" I giggled but thought to myself that I would have to tell him that it's not nice to say that. Then last night, as Jimmy and I were lying on the couch, Jimmy asked Landon to lay with us. Landon responded, "not yet, soon." Jimmy asked again a few minutes later and then again, Landon responded, "Don't ask me again, pwease!" I lost it! I didn't mean to but laughed so hard. And actually, as I think about it, he was asked over and over again. I guess it's not a totally inappropriate response. Unfortunately now he knows that it makes me laugh so he has quickly responded not to talk to him. We did tell him this morning that it's not nice to tell someone not to talk to you. I often have stories about Landon because he says some pretty funny things, but Jordan is so funny too. For Jordan, its the look of determination in his face, it's the ease in which we can get him to produce a huge smile, it's the belly laugh he gives when you tickle him or talk in a silly voice. I mentioned this in the last post, but our baby will be 1 this week. I'm so excited to celebrate such an awesome milestone in his life. I'm excited for a day that's about him and celebrating who he is. All morning my two boys have been moving from room to room, making messes and laughing all through it. They are already becoming best friends. So this is all way, I am choosing to make this blog less about Landon and Cystinosis (much less)and more about our whole family. Cystinosis occupies so little of our thoughts these days.. I use to talk about how determined we were to kick Cystinosis' butt. It may still be here, but I think we succeeded in doing that.

Happy Birthday Jordan

I hesitate to post this because I'm not sure where it's going to go, but here it goes..This starts with Jordan. In one week from today, our baby boy will turn one. I cannot believe that he has been in our lives a whole year! I am so thankful that Cystinosis did not stop us from adding Jordan to our family. I have always said that Jimmy has qualities and strengths that I do not, so the two of us together make up a pretty great team. We can bring out strengths in each other- we have... I feel the same about my two sweet boys. I know that we will learn more about them as they get older and will discover what their strengths are, but I see differences in them right now and if they form the team that Jimmy and I hope they do, they will be unstoppable. Landon is sensitive and cautious... He thinks and observes before he makes a move. He watches to make sure his brother does not get hurt or in trouble. He moves things out of the way that could serve as trouble for Jordan. The people who he allows to get close to him, are carefully chosen by him. He is silly and so clever. He is a quick learner and sometimes teases us, well me, acting as though he doesn't know something when he does. Jordan is our little "wrecking ball." Miley's song came at such an appropriate time because our Jordan dives in with no worries and takes out whatever is in his path. He has no fear. He's ready to get down and dirty. He loves to laugh and he loves to be entertained. I think that Landon will learn from Jordan that sometimes its okay to jump in and that its fun to be spontaneous. Jordan can teach Landon that it's okay to give people a chance and that even it things don't work out, that he will still be okay. I think Landon will teach Jordan to stay in the moment and to consider consequences. Landon will keep Jordan safe and protect him- his body and his heart. Landon will teach Jordan that you never get up and to let nothing stop him. He will teach Jordan to appreciate life and to be prepared that life does hand you lemons sometimes, but you must choose to sweeten it up and make lemonade. I hope that they are open to being each other's teachers and students because they both have such awesome things to offer. I was just looking at 1st birthday pictures that were taken of my beautiful babies. Landon's pictures always give me very mixed feelings. It takes me back to a time that was so difficult because we didn't know what was wrong with our boy, but it was also a time where I was naive and did not know the seriousness of what was to come with Landon's health. As far as we knew, he was a perfectly healthy little guy who just wasn't eating enough. His belly was clear of a G tube, but I look at his face and can see that something wasn't right. His body wasn't functioning well because he was malnourished. So yes, maybe there was no G tube in his belly, but that's certainly not where I want me baby to be now. Our life looks a lot different than I expected when I saw that positive pregnancy test over 4 years ago. I never imagined how good it could be. Never..