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..