My Grown Up Christmas List

I haven't posted much because, honestly, I'm still trying to learn to balance my time between mommy stuff, work and keeping up with the house and laundry. The ten minutes it takes for me to update this blog sometimes feels like another thing to do. With that being said, I had a realization this morning and feel so blessed for the life I have despite feeling overwhelmed at times. Honestly, I am so lucky that I am to be able to stay home with my boys and be the one to do all of the things with them during the day. Then I have an awesome husband who picks right up when I get home, and I go off to meet with kids and their families as a behavioral therapist. I just joined a gym so am committed to being healthy and getting the rest of this baby weight off. It's good.. so good. This morning was uneventful and for the most part, a good morning. Lately Landon has told me that he does not want to go potty in the morning before he goes to school because he likes using the bathroom at school. It's child size and he thinks it's pretty cool to do it all by himself. I usually agree to this, but its so difficult to take him to the bathroom at school because Jordan is so active and busy so the extra step of taking him to the bathroom at school after getting both boys in and out of the car, coats off then back on only to take Landon's coat back off and put it in his cubby sometimes feels like a ton of work! I told Landon, this morning, that I wanted him to go potty at home and that he could go potty with his teacher before snack at school. Landon was NOT happy! The result was a very upset Landon, a very frustrated mommy, and a bit of yelling and ultimatums being given.Once in the car he calmed down and I calmed down so by the time we made the 3 minute commute to school I apologized for yelling. He became very frustrated again as we walked past the bathroom at school. I remained calm and asked him if he wanted to sit on my lap for a bit before he went into school. Well, Jordan took his opportunity to grab at his big brother which made Landon even more upset. He finally calmed down enough to go into his class room and Jordan and I left to conquer our to do list. Fast forward to this afternoon, we got home from school and I gave the boys lunch. Out of no where, Landon came to me and said, "Mommy, doggie (he is a doggie at times) say sorry. Doggie want to go potty at school." It made me smile that he was making an attempt to make amends after our episode this morning. I sat him on my lap and asked him if he felt mad at me this morning. He said yes and that he wanted to go potty at school. I told him that I'm sorry that we had a tough morning and that we both got mad. I then told him that it's really hard for me to take him to the potty at school and that I really want him to be a good listener and go potty at home and then he can go at school with his teacher. He agreed, for now at least. So, I wondered, when did he get so big? He really is just the sweetest little boy, ever. We had the boys' pictures taken yesterday with our great friend who happens to be a great photographer! About 8 months ago, when we attempted Easter pictures with both boys, Landon cried and absolutely refused to sit where we asked him to sit. Yesterday, he happily sat, cuddled his baby brother and gave us the biggest smile. Jimmy and I beamed with delight and shook our heads as we watched our big boy stand, with one hand in his pocket and pose for a picture, looking so grown up. So, if you have been wondering, Landon has been doing so, so well. He is eating better, less shy and anxious and is becoming more mature by the day. I think of the song "My Grown Up Christmas" list.. I struggle to think of anything tangible that I want for Christmas. Could I use clothes, make up, perfume, decor for our house, a gift card to go out for dinner or for a massage? Sure. But it's so true when they say that money and things cannot buy happiness. Our happiness is these two awesome little boys who make life so complicated at times, but so full of joy and laughter. My life is so complete with these three guys in my life and such wonderful family and friends. If I don't update again before the new year, Happy Holidays, Happy New Years and I hope yours is filled with as much joy and laughter as we have in the Hartz home. With love, Lauren

Week Full of Doctor Visits

I have to be honest, the past few weeks have been insane! I don't know if I am coming or going.. First, I went back to work. Now I'm only working about 6 hours a week but it is split between 3 evenings so I feel like I'm running a lot and am gone a lot. I leave when Jimmy gets home from work and get home after the boys have gone to bed, or at least when Landon is getting ready to go to bed. I really like it, but its certainly an adjustment. Landon was sick at the beginning of this month and both boys have had colds off and on all throughout the month. The runny noses, sneezing and coughing also brings about interrupted sleep schedules and grumpy little boys, Luckily, both seem to be on the road to recovery. On Wednesday of last week, Landon had an appointment with a new ophthamologist, eye specialist. The doctor he was seeing previously, referred him to the chief of the division at Children's Hospital once he found crystals in his eyes. I was not looking forward to this appointment. For one, I knew that we would be told to give the eye drops more often. I was only giving him the drops once or twice a day. Many people don't start the eye drops until the crystals cause discomfort. We started them early so I guess, in the back of my mind, I excused myself from pushing it too much and told myself that whatever we did, as far as the drops, was going to be okay. I told myself that, but didn't necessarily believe it. I also was not excited about the appointment because I'm always a bit skeptical of what a physician advises when he/she does not know Cystinosis. It's just part of having a child with a rare disease, I think. Anyway, imagine my surprise when I was told by this new opthamologist that he has treated 60 or more patients with Cystinosis and that he actually works on a study in which they are investigating a gel that can be used twice a day in place of eye drops. He said that they believe it works and that it is just about ready for clinical trial, or a research study in which human subjects are used as participants. Besides knowing his stuff, he was such a fun guy and Landon really liked him. Landon actually even gave him a hug when he asked at the end of the appointment. We learned that Landon does still have crystals in his eyes. The doctor recommended drops 4 times a day (totally feasible but I need to make it a habit). He was very surprised, and very pleased, to hear that Landon is not sensitive to light and does not seem to have discomfort or pain in his eyes. He feels like we have a pretty good handle on it right now and that as long as we use the drops, it should stay that way. Thursday of last week, I took both boys to Children's so that Landon could get his routine blood work. This blood draw was the first since he stopped taking Procysbi and went back to Cystagon. Blood is absolutely, positively, Landon's least favorite thing to do. It never seems to get easier. Jordan sat in the stroller, as I was holding my big boy, and smiled at him the whole time. I like to think that he was trying to comfort him and figure out what was going on and not that he was being mean to his big brother. I do think that's true. My boys really do love each other. Friday of last week, we ventured back to the hospital for Landon's nephrology appointment. We usually do not have so much going on at once but I didn't realize that I scheduled the appointments in the same week and I held off on blood work because he was sick. The appointment with Dr. Nguyen went very well. His electrolytes are all in a normal range and we had the opportunity to talk, at length, about what that all means.. What the numbers tell us about his bone health, kidney health, what is coming out in his urine etc.. Landon is actually really healthy despite having this disease and having to take so much medicine. His health is drastically better since he was diagnosed over two years ago. One other really good thing is that despite Landon growing taller and gaining weight, we have not had to increase the amount of medicine he takes. So essentially, he is self weaning. We do not yet know his cystine level and the numbers that are indicators of kidney functioning but should know all of this within the next couple of weeks. Oh, and I have to tell you that my big boy has not hit the 30 percentile in height. It took so long to get him back on the growth chart, but he is there now! Last, but certainly not least, this week is the 3rd Annual Lots of Love for Landon Halloween Fundraiser. We are expecting about 270 people. We have some awesome Chinese Auction items, great door prizes and we are really excited about Saturday.

Okay, you win!

Sometimes as we move through life in our bubble of all is perfect in our world, Cystinosis gives us a kick, well maybe not a kick but more of a tap, as if to say "Hey! I'm here. Don't forget about me!" Landon has great days and seems to feel well most of the time. So it allows me to forget about precautions that we have to take. Some with Cystinosis do not sweat which results in overheating easily. Landon's nephrologist has asked me if I notice whether or not he sweats. My response is that I really haven't noticed but that he seems to handle the heat well. He does for the most part but we have to be very observant of when he is bit drinking a lot and when he is becoming overheated. I am realizing that he probably does not sweat and I really hoped that would not be the case. Today we went to Seven Springs for the Autumn Festival this afternoon on this almost 80 degree day. The sun was bright and there wasn't much of a breeze. Not long after we began walking around, with the boys in the stroller, Landon seemed tired and moody. He didn't get a nap so I didn't think much of it. I grew a bit concerned when he didn't want to eat and then had to be coaxed into drinking his water. My sister noticed at one point that he felt warm so took him inside and stood under a fan. He seemed to perk up. Jimmy and I walked both boys around soon after hoping that they would fall asleep for a bit- they didn't. Landon seemed ok but tired. We left around 4 and drove home. He fell asleep for a little while but when we got about 30 minutes from home he started to cry. Before we knew it, he threw up.. We pulled over on the highway and quickly changed him. When we got home he was crying over everything and didn't want to eat dinner. I asked him to use the potty and he cried that he didn't have to go. By this point, he hadn't gone in 2 hours which is unusual. We decided to try to get water in him through his G tube. He threw up.. Jimmy and I jumped into problem solving mode- getting him into the bath tub and cleaning up his vomit. We got Jordan ready and into bed and gave Landon cuddles on the couch. We were able to get Tylenol and Pedialyte in him so we are hoping to keep him hydrated throughout the night. Lesson learned for this mommy.. We have to be extra aware and extra cautious when we go on these outings and expose him to the heat. Cystinosis will not stop us but we have to allow it to slow us down sometimes, just a tiny bit!

Back to School!

I have to admit that I was really looking forward to the fall. Landon is not yet a fan of swimming so we spent not one day at a pool this summer. Jordan is young so can't be out in the sun for very long and can't yet run around so it didn't feel like much of a summer this year. You can't beat this beautiful 65-70 degree weather in Pittsburgh right now so I am a happy camper. And, school has started.. I feel bad saying that I was excited for Landon to go back to school. It's not that I want to get rid of him or necessarily need a break from him, although this giving up nap thing has not made me the least bit happy. But, I like being in a routine and school helps us to do that. And I was a little less nervous this year considering Landon has the same teacher and is in the same class room with a couple of the same kids. I knew the transition this year would be MUCH easier than last year, and it was, by far! It was actually easier than I imagined. One the second day of school, I had the option of staying for the shortened class. My mother-in-law was watching Jordan so I was prepared to hang around. Landon walked in the class room with no reservations and was fine when I told him that I would stay at school but that I was not going to stay in his class room with him. It's almost as if the summer did not happen and he is back on track with going to school and is perfectly happy about it. This means the world to me, as his mommy who hates to see him feeling anxious and sad. In other news, we decided to take Landon off of Procysbi (the 12 hour drug) and put him back on Cystagon (6 hour drug). His cystine level came back at 1.2. Our goal is to have it under 1 and it was as low as 0.4. I know that it takes time for a person's body to adjust to a change in medication and I am certain that if we gave it more time that Landon's body would have adjusted, but it makes me feel physically ill to know that his cystine level and creatinine level went up and I just don't have the patience to wait for it to get better when I know that there is something else that was working. I have said this over and over again but will say it again. The better Landon is doing, the harder it is for me to deal with the hiccups that arise. This was a reminder to me that Landon's health will begin to decline at some point. His numbers won't look beautiful as he gets closer and closer to needing a transplant, whenever that day will be. I hope that he is well into adulthood by that point but there are no guarantees. I'm just not ready to go there right now so we had to go back to what was comfortable and familiar. There really is no reason why Procysbi shouldn't work for Landon and we probably just needed to tweak the dose a bit, but Cystagon was working so we will stick with that right now. I look forward to trying Procysbi again in the future, maybe sometime next spring or summer because I really want him to be on it by the time he is in school all day which will be kindergarten. And I have to tell you, within a day or so of switching back to Cystagon, Landon was acting like Landon again. He had been off for a month and a half and it finally seemed like he was feeling better again. And honestly, I really don't mind the 4 times a day dosing. It doesn't affect him yet. He doesn't wake up at 2am to take medicine, I wake up to put it through his G tube. It's a very small price to pay. If Landon was having the problems that so many who are on Cystagon do then I would have been more committed to it, but he hasn't had any problems with it in a long time. My excitement and motivation about Procysbi had to do with the thought of Landon feeling even better than he was and having an even better quality of life. Last but not least, the Third Annual Lots of Love for Landon Halloween Event will take place on November 2nd!! We are really excited!! The CRF has been kind enough to create a website for people to log onto to order tickets and make donations so as soon as that is ready, the Evite will go out and I will post the link on this blog. Contact me at LaurenLHartz@gmail.com for any questions or to be included on the Evite. We are looking for Chinese Auction and Door Prize items. And a new thing we plan to do this year is give businesses the opportunity to advertise at our event. For $200 a business can take part in sponsoring the event and will have a sign displayed at the party. If you are interested in helping with any of this, let me know!!!

Terrible Twos, or Threes?

Good news is that Landon is a typical 3 year old in many ways. The bad news is that Landon is a typical 3 year old, kidding! Kind of... You know how they say that the terrible twos have nothing on the 3s. I didn't believe it. Landon was always so laid back so I thought we may be in the clear. Not so much! I think he is giving up his nap. He did not nap 3 days this week. It used to not be a big problem if he missed his nap. But now, when he doesn't nap he is incredibly wound up and does not listen or follow direction unless he being occupied. And if not given the attention he desires, he does things that he knows will get a reaction from us. It's exhausting! He spends a good bit of time in time out and losing privileges/toys etc.. It's only a phase, I hope! I have been making more of an effort to spend quality time with him and doing more structured activities rather than playing cars for 15 minutes here and there throughout the day. Pinterest has given me ideas for some new activities! We are still working out some issues with Landon starting Procysbi (the 12 hour medication).. He has had blood work twice recently- last week and the week before. The first week he had it was when he was regularly vomiting and last week he had a bad cold.. The first blood draw indicated that he creatinine level went from .03 to .045. This number had consistently been .03 for a while now and to jump up is not a good thing. His nephrologist thought it may be a result of being a bit dehydrated from vomiting. People with Cystinosis can easily get dehydrated. I should mention that creatinine is one measure of kidney functioning so my stomach dropped a bit when she said that. So we had his blood drawn again and added a test that more accurately measures kidney functioning. I took him back for his second blood draw and added the cystine test to see how high his cystine level is and another test to measure kidney functioning. I learned several days later that his creatinine went from .045 the week before to .040 so down a bit but not as low, and as good, as it had been. His bicarbonate level (measures some of his electrolytes) was a bit low but he hasn't had his dose of medicine for this so not something to be concerned about.. The other kidney functioning test (I think it was called the NER) showed a drop from 101 to 64 (the numbers may be off a little because its coming from memory). At 101, his nephrologist reported that his kidneys function just as anyone of his age. She reassured me that although a drop, not for the better, it was not a huge drop and something we should just keep am eye on. Because he was sick, she reported feeling ok about the results. I am praying that this is the case and that when he has a blood draw again in September that the numbers will look like Landon's again. We still do not have the results of the cystine test but if that number doesn't look okay then there is a good chance that I'm going to ask to stop Procysbi and put him back on Cystagon. I have nothing negative to say about the drug because it has provided a much better quality of life for so many in the Cystinosis community but I cannot keep him on a drug if I know that another was working better for him. I'm really jumping ahead in even discussing this but it's my nature. I need to get things fixed if there is even such a thing. The last thing I want to mention is that our 3rd annual Halloween event is scheduled for Nov 2nd. E-mail me for more details!!! LaurenLHartz@gmail.com

Surprises and Hiccups!

I haven't updated since July 15th. So, what's new since then? Potty training. Well, it went much better than I ever expected. He is wearing underpants with very few accidents while he is awake and still wears his diaper when he naps and at night. His diaper is so full when he wakes up. Night training is probably a long time away and I am not at all concerned about it. When his body is ready for it, he will do it. He's not so good at telling us when he has to pee yet although if his pants are off and his potty chair is in the living room, he is great about sitting and going when he has to. It's when his pants are on or the potty chair isn't convenient he has had a few accidents. I have to say that he has not had a single accident while we are out. We put him on the potty every 1 1/2 hours when we are out which I know helps but we went for a walk yesterday and it was over 2 hours before he went potty. Anyway, I am a proud, proud mama! In other news, Landon has started the 12 hour drug, Procysbi. He took his first dose on July 20th. Along with the new medicine, his nephrologist changed a few other doses so that we don't have to give any meds more than 3 times per day. He had 3 medications, including Cystagon, that he took 4 times per day. All in all it has been going well.. We've had a few hiccups and I am so thankful to Landon's nephrologist and some of my friends in the Cystinosis community for helping me to help Landon transition. The hiccup has been increase vomiting. Strange enough but I did not anticipate this. I've always been prepared that when we change doses and add more medication that there is a possibility that he will throw up and we need to work through it. But I didn't prepare myself this time around. I've said it before and I know it to be very true but the better Landon is doing, the harder it is for me to accept the hiccups. The few times this past winter that he got a cold, I really struggled to not get to worked up about it. Is a cold a big deal? Not for the most part, but it means I have to cut back on the amount of formula he gets and his weight gain slows down. Anyway, I have done a bit of experimentation and have written a new schedule and posted it several times. I do not feel that the hiccups are because of the new medication, but I think that there have been a number of changes and I have to experiment and figure out what it is that his body is reacting to. I'm not sure if I explained anything about Procysbi and how it works so I will do that now, to the best of my ability. The difference in Procysbi, as compared to Cystagon, is that Procysbi is released into the intestine rather than the stomach. For those how have a lot of GI issues, this is wonderful because they don't get sick as a result of taking it. When Landon was first diagnosed, he threw up everything that went into his stomach because he had delayed gastric emptying. At the hospital, doctors put a NJ tube in before a G tube which means that all of the fluids, med etc went to his jejunum and intestine and bypassed his stomach. Administering the drug is a little interesting.. Landon gets the drug at 5am and 5pm. I chose these times because he cannot eat 2 hours before and 30 minutes after taking Procysbi. I pull 50mL of applesauce and empty it into a bowl, leaving 10mL in the syringe. I then empty the contents (which remind me of sprinkles) into the bowl with the applesauce and mix it up. I collect that applesauce in the syringe with the leftover 10mL of applesauce into the syringe. Then I collect 30mL of orange juice into another syringe and put some of it in the bowl that has some leftover applesauce and beads from the Procysbi. The orange juice helps to collect the remaining beads. I then push the syringe with the applesauce into the extender of his G tube and orange juice and flush it with water. So that's what's new with us. It's busy but we are getting adjusted to a new routine and I'm enjoying the longer period of sleep. My plan was to stay awake at 5am and work out and get things done before the boys wake up. That happened one day. Oh well.. I'm still working out and still getting what I need to done. =) Oh, and last but not least. We are starting to move on plans for the 3rd Annual Lots of Love for Landon fundraiser. It will be held on November 2nd at the Home Economics Building in South Park (same as the last 2 years). If you want included on the guest list, want to donate a Chinese Auction item or door prize item send me an e-mail at LaurenLHartz@gmail.com.

Is He Ready?

Today is the day... I have been thinking about potty training Landon for quite some time now. I made a few half attempts way before he was ready to be potty trained. At some point I felt like he was behind in most of his milestones so I thought it would be wonderful if he was potty trained early. I tried, but the moment I put him on the potty and he got a sad look on his face, I stopped immediately. I couldn't push it. Which I do believe was the right decision. I totally get that kids take control over things that they can which includes eating and using the potty. That's why this eating thing with Landon, or lack of, has been frustrating.. We've had to be so careful about not making eating, and now potty, a battle. And I have to say that Mr. Landon does what he wants to do, when he wants to do it, unless there is a consequence- this is my dilemma! I have talked to friends, doctors, therapists about ways to go about doing this.. And from their suggestions, have created my own plan. We have no where to go until Thursday evening of this week. I figure if it's a success, or a bust, I will know by Thursday so can decide what to do when we go to dinner Thursday night. So here is the plan... I put together a basket that has toys that Landon can only play with when he is sitting on the potty and before his nap today we selected some books and put them in a basket. He loves reading so I think reading will keep him on the potty for a bit. We put out the little seat that you can put on the regular toilet if he wants to sit on the big potty and his little potty chair in case he wants to use the little potty (he chose where to put the little potty). We were at Rite Aid the other day and he wanted a pack of m&ms. We bought a few packs and I told him that there were for when he uses the potty. So, along with a couple of lollipops, they are in a bowl. I have a sticker chart hanging in the bathroom so he will put a sticker on the chart and get an m&m if he actually eliminates on the potty. I'm debating on whether or not to give him stickers for each step (telling me he has to go, sitting on the potty etc).. If it doesn't go so well, I might. But, he is already getting stickers for getting eye drops so I feel like they may lose their value. If this goes well today, I will decide how many stickers he needs to get before we get something really cool that he wants. I have to admit that I'm not very confident. Landon pees a lot because he has Fanconi Syndrome and his bowel movements are a little inconsistent so I'm just not sure how much control he has over that. I actually am having a lot of anxiety about doing this. I don't like doing things if I'm not sure if they'll work and potty training isn't necessarily something that you slowly work towards. But, I have to get over myself here and take a chance. If Landon is not ready, it's okay, and it doesn't mean that I'm wrong or that I failed. I still have a hard time seeing him as a big boy. I never give Landon enough credit and I try to remind myself of that. So we'll see how it goes.. Wish us luck!

Happy Birthday to Me!

My birthday is this week, the big 3-0! I'm feeling good about it. I'm in a good place in my life.. I have two beautiful little boys, happily married, a home, a great family, great friends. What else do I need? I got an awesome early birthday gift on Friday. We found out that our insurance approved the 12 hour drug to replace Cystagon (the current drug that slows down the progression of Cystinosis). It's approved with an $80 copay. Fortunately, Landon has secondary insurance too so there is a pretty good chance that the secondary insurance will cover the copay but if not, the specialty pharmacy has a program to assist with this. We'll make it work, no matter what! The representative from Raptor Cares (a program created by the pharmaceutical company that created this drug) gave me this information and followed it up by asking if I want them to move forward. With tears and my eyes and excitement in my voice, I calmly said "yes, please." I have noticed that since Landon was diagnosed my feelings are more exaggerated than they used to be. When I'm nervous, sad, angry... my heart races and I have to remind myself to take deep breaths. I recognize it.. When I'm happy or excited, I feel overly excited- I think and talk much faster. Once I got the news, and had a bit of a break down, I made a couple phone calls, text messaged the news to our family members and put it on Facebook. Then I had to jump in the shower to get ready for date night with Jimmy (coincidence that it occurred on a day when we both wanted to celebrate) and to help calm myself down. So why am I so excited and emotional about this? Several reasons enter my mind.. I haven't slept through the night since Landon was very young (definitely before he was diagnosed).. My body has adjusted to waking up but a full night's sleep would be so nice, especially since Jordan is sleeping through the night most nights. Most nights, I get 4-5 hours of continuous sleep and after that it's broken up. This isn't the main reason though... Those who have been in the study to test the efficacy of Procysbi have reported that it was life changing... Many on this new drug report less stomach problems, eating better, feeling better overall... Now I will say that Landon doesn't exhibit many stomach issues. He rarely throws up now and eats pretty well at lunch and dinner time. So maybe we won't notice much of a difference, or we may realize that the Cystagon was affecting him. But, I think the reason I am so excited is because we are seeing progress. The researchers are moving forward, they are getting results.. This is why fundraising is so important to us. The money that we donate counts, it really does. It is being used to fund current and future studies. So what is the difference between Procysbi (new drug) and Cystagon (current drug). It is essentially the same drug (from what I understand) except it is a delayed release drug allowing people to take it every 12 hours instead of every 6 hours) and it enters the body through the intestine rather than the stomach (hence the report of less GI problems).. This always takes me back to Landon's diagnosis. The tube that was initially inserted allowed milk and fluids to bypass the stomach and go right into the intestine. Landon threw up anything that went into his stomach at first so this was the best option for a while. There are some guidelines that we will have to follow. I'm actually amazed at the families who had children with G tubes in the research study and figured out how to get it through the G tube. Right now, we mix Cystagon with water and insert it through the G tube. It's never a problem. However, the new drug will not successfully pass through the G tube with water. After some experimentation, the families in the study learned that you could use applesauce to push it through the tube. friend of mine created a YouTube video for us newbies to help show us how to give the new medicine. You open the capsule, empty it into a certain amount of apple sauce, then use orange juice to collect the reminder of what was left. Our schedule is going to have to change a little bit as well... You cannot having anything to eat 2 hours before taking the drug and 30 minute after. It will take some getting used to but I can't wait to have it in our hands!!! And who knows, maybe I will be blogging about a cure by my 35th birthday. That will be my wish this year when I blow out my 30 candles.

He's getting older..

How do I know that Landon is getting older? 1. He's bigger! This may sound silly but you all know how much our poor boy has struggled to gain weight and grow taller. Landon is still getting weekly feeding therapy, with speech therapy added to the sessions now. But, once a month, his session includes meeting with a nutritionist who weighs him and then she reviews a food log that I keep and makes recommendations. She came to get me in the waiting room this week and first asked me what I am feeding Jordan (my sweet almost 6 month old weighed what his brother weighed at 1 year old when he was 3 months old) and then asked me what I am feeding Landon. He gained 2 pounds and is 3/4 inches taller in one month! She was thrilled with his food intake, although he still rarely eats breakfast. She isn't ready to cut back on the amount of toddler formula he gets quite yet. To be honest, I'm not either.. My frustration with the formula was because he wasn't eating and I thought that he was too full. He is eating well now and if the formula is helping him to getting bigger then so be it. He eats well now and eats a variety of food. I'm happy. I don't care the least bit about giving him formula for extra calories. 2. He engages in a lot of imaginative play. He makes his cars and trains talk.. He pretends that he's a kitty.. 3. He tells stories.. It's quite often the same few stories over and over again, and you can only understand parts of it because he throws in Landonese, but it's hysterical to listen to him. It's particularly funny when he tells a story that involves him crying and he essentially laughs at himself for crying. 4. He understands and remembers more.. This is good and not so good at times.. Landon has an appointment with his nephrologist on July 19th which means that he has to get blood work. He used to have to get it once a month. Let me tell you that this was terrible! Little kids getting blood drawn is no fun at all, but there are a few added headaches. We have to try to plan having the blood drawn around when his medicine is given. His nephrologist is very understanding that it's hard to coordinate times but it makes me crazy. Landon gets his Cystagon doses at 2am, 8am, 2pm, 8pm.. To get an accurate Cystine reading, we need to know what his level is right before he is dosed again. So, ideally his blood would be drawn right before 8am or right before 2pm, right? Yes, but really we can only work with 8am. The blood has to be drawn before 10am Monday though Wednesday. Managing to get 2 kids up and out the door before 7am and then sitting in morning traffic makes it VERY difficult to get to the hospital by 8am. And even if we do, the liklihood of registering and getting in quickly for blood work is not good- not good at all.. We usually wait about an hour and I struggle to be patient when I see 1 person called in at a time when there is 5-6 rooms in the lab and 6 people behind the desk when we finally get back there. But, I digress... Anyway, I told Landon when we parked that he was going to have to get his blood drawn and that it hurts for one minute and then it's all better. I try to be as honest and prepare him as much as possible. In the past, he hasn't really responded. This time and he yelled "No!" and looked so upset. Ahh!! He understands and remembers now.. We got to the room and he climbed up in the chair, being so brave. As soon as he saw the tubes in which they collect the blood he started crying and jumped on my lap. It's no longer enough for me to hold his arms and legs. He's getting bigger so he sat on my lap as I held his legs and one arm, one phlebotomist held his right arm steady and the other worked her magic. So yes, my boy is getting bigger! He is growing up.. He's not a baby anymore.. It's a wonderful thing to watch, but makes things complicated at times.. If this is any indicator of the complications I'm talking about (aside from understanding and remembering more).. I just asked Jordan not to turn 3 today.. We'll just skip from age 2 to 4..

Challenges

Today was Landon's first day at a 3 day summer camp at a local gymnastics studio (Gymsport if you are local)... There was a deal on Living Social and my sister-in-law was signing my niece up for a camp. The class is for 3-6 year old children which made me a bit anxious because Landon is such a young 3 year old (physically, socially, verbally etc).. But, Jimmy suggested that we give it a try. Jimmy is a big advocate for exposing kids to those a little older so they can learn from them and be challenged a bit- I agree so we went for it. I knew that it was not going to go smoothly. His cousin, who he adores, is in the class but I knew that it probably wouldn't help all that much. Landon does or does not do whatever he wants and no one can change his mind. I know, I know.. if he stays that way I will be a very happy mother of a teenager, but sometimes now I would like for him to give into peer pressure (sometimes). We got there 40 minutes early (shame on mommy for not confirming the time before we left).. Anyway, I thought it may work to our advantage to let him check things out and talk to his coach for a little bit before he was asked to leave my side. When it was time to start, his teacher led the class onto the mat and asked Landon if he was ready. "Yes!," he said excitedly. He then turned to look at me, sitting down holding Jordan, and he freaked! Coach Dana took him and sat him on her lap and began the class. He cried and cried and cried despite the fact that I was about 15 feet away and he was facing me. After a few minutes, she let him go and he ran back to me. So I had to think.. how was I going to handle this one? The never ending question for parents, right? I told him that if he chose not to go with his teacher, that he needed to sit and watch and was not allowed to run around and play. It kind of backfired. Landon is a people watcher so certainly didn't mind sitting safely with me on the bench watching the other kids. His coach tried a couple more times to get him to come out and then told me that I could come out with him if I wanted. Luckily, my brother-in-law was there with my niece so he took over baby duty with Jordan. I started off by staying close by and encouraging him to participate, but again, he was perfectly happy to sit next to me and watch. So, with the okay from his coach, I "assisted" in getting my son to participate in the class. I watched as she picked him up, placed him on the balance beam let him walk across and then immediately put him on the bar for the next activity. At the next station the kids had an opportunity to go on the little zip line and fall into a pool of foam blocks, go down a sliding board into the foam blocks, jump on a trampoline among a few other activities. All Landon wanted to do was jump on the trampoline, but quickly got off or ran away if another child got near it. So, I picked him up and put him on the zip line (holding onto his hands as he held on and kept a hold of him as he went into the pool of foam blocks.. then picked him up and put him on the slide a few times each. There is such a fine line between respecting his personality/temperament and encouraging him to try things and take chances. His bone health is good now (we have scans to show that)... I am sympathetic that he may get tired more quickly than other kids and that he is behind in his gross motor skills. I keep an eye on how he is acting and responding to his environment, but I want to help him to build confidence and know that he is capable. I think I may try to sign him up for another camp or even a class at this gym. It will challenge him a bit and hopefully keep him on track for going back to preschool in the fall and going without me. He also can use the help with his gross motor skills. I think if we stick with this that it help build confidence in him. He is so cautious which is not a bad thing.. it will keep him safe and he probably will never be a kid that I have to worry all that much about as far as getting hurt, but being anxious and scared is a tough place to be. We're up for the challenge... Landon has amazed me in so many ways and has come such a long way. This is just another step...

Fundraiser Updates!

Below I included the link to a video that Jimmy and I (mostly Jimmy) created that includes pictures that our friend, Leah, took at the golf outing. http://animoto.com/play/E0g2gY92m7wXcwJg1zVDfw This event raised over $16,000 for the Cystinosis Research Foundation! I have to tell you all about another fundraiser that was done. My dad's cousin works in the special education department at a local high school. As part of the program, they have a cafe in which students can purchase drinks and snack items. Each month, they choose an organization to donate their proceeds to. For the month of May they chose to donate to the CRF in honor of Landon. They donated $2,000! Isn't that awesome?! In other news, a friend of ours, Amber, talked to us about the possibility of holding a motorcycle ride to raise money for the CRF as well. A family member of hers has done this before and expressed interest in organizing it when she heard about Landon. Incredible, incredible, incredible! People are so good and so kind. We are also beginning to think about the Halloween event. Mark your calendars for November 2nd. It will be held at the same location that we have had it the past 2 years- The Home Economics Building in South Park.

Fundraisers, Eating, Eyes Drops and probably more..

I will begin by saying that the 2nd Annual Lots of Love for Landon Golf Event was a success and we are so thankful to so many people. I will include more information when we have a final amount raised and pictures to share. It was great!! I was thinking today as I watched Landon sit at his picnic table in the back yard eating his lunch how proud I am of him, but also how sad I feel at times that as normal and healthy as he seems it is just a bit more complicated. I have posted a lot in the past about our struggles in getting him to eat. We so desperately wanted to sit at the table or go to a restaurant and for Landon to eat with us. And now he does! It was a nice day today so we played outside for a while and ate lunch at the picnic table. Landon sat with his plate in front of him including macaroni and cheese, lettuce with Ranch dressing and strawberries. He ate every bit of what was on his plate and finished it off with apple juice. This is not unusual for lunch and dinner, although like any other kid, he has great meals and some not so great. Yes, like any other kid. I feel like Landon eats as well now as his peers. He probably doesn't snack like many of his peers do because generally he has a good lunch and a good dinner. Breakfast is tough- he sometimes will have a few bites of scrambled eggs but generally he isn't interested in having breakfast. But it made me think, I wish that's all it took- to be just like the other kids, for him to not require the calories that he gets from 24oz of toddler formula. I still shoot that formula through a syringe, 2oz at a time, several times throughout the day. And today I thought- if I only gave him mac n cheese, it would have had more calories than the salad and strawberries. It's another struggle. Do I offer healthy feeds that don't contain a lot of calories in hopes that he will develop a healthy diet in which he eats a variety of food or do I not worry about that now and focus on getting the calories in him and getting him off the formula. My mama instinct tells me to get over the fact that we still need to give him this formula- yes, get over it, Lauren! It's more important that he eats, tries a variety of food and eats healthy foods with great nutritional value. On to the eye drops. It's getting easier. He is consistently getting them 3 times a day. Today I had to give them to his teddy bear, myself, daddy (when he came home) and then to Landon last. Daddy was told to choose a prize from the prize bag after he got his drops- not sure why this wasn't offered to myself or teddy. I have to work to open his eye to get the drops in and he screeches and then gets down when we are done, picks his prize and plays with it. He's not really even crying anymore- just squeezing his eyes shut and trying to hold onto my hand as I do it. I can't say I wouldn't do the same thing. You should see me at the eye doctor's office when they try to shoot that air into my eye for the glaucoma test (I think that's what they are testing?). Nothing in the world makes me more anxious (except getting my eye brows waxed)- okay I digress.. So that's about it... I will post a link to a video that Jimmy and I are working on that will display pictures taken at the golf event.

It's hard to title these posts anymore...

I think I always begin my posts but stating how busy we've been. So, I will not this time! (We are though!)... All is well, very well! This Friday is our 2nd annual Lots of Love for Landon golf outing organized by some pretty awesome uncles that Landon (and Jordan) have... I cannot say enough how awesome our families are! If they are not taking something like this head on, they are supporting us in making things happen! Every one of Landon's aunts, uncles and grandparents are involved in some way whether it be organizing, helping with support that day, watching the other kiddos so that moms and dads can give 100% to the event.. whatever.. they are there! We also have some pretty incredible friends who have insisted that they are helping without giving us opportunity to say "no, that's okay!" I will update about the event after it happens! Stay tuned! Landon is doing so well! We get little reminders every day that he is no longer our fragile baby but is a rambunctious little boy! His personality shines through more and more all the time. He's funny- very funny! He dances (and tells me "sing mommy, sing!- no buddy, you want me to dance, not sing!").. He tells stories which are hysterical because he is very animated and he still adds some mumble jumble in with key words. He likes to agitate, mostly me which he probably learned from his dad. He seems to be pretty athletic which makes me (and particularly his dad) excited. I am far from athletic so I hope my poor boys don't take after me! He throws and hits a ball well and can handle a soccer ball pretty well! I can't wait until he's older enough to participate in sports. We started giving him the eye drops. I have to say that the first day seemed a little too good to be true (it was!).. I decided to allow Landon to give me eye drops for a few days before I introduce his to him (we used general eye drops- not his). He enjoyed this and the first day, told me that he wanted to take a turn. I went with it and he laid on the couch giggling and kicking his feet and let me put eye drops in his eyes. He seemed a bit shocked after I did it, but kept a big grin on his face. Well, the next day, no go.. He did not want to take a turn. We had a few more days of him giving them to me without me expecting him to take his turn. But as of yesterday, he has to take his turn. Is it going well? As well as can be expected. He doesn't want to do it and he cries but we do it and then he picks a prize from the prize bag (yes, each time)... Tomorrow he has another day of getting a prize each time and then we will change it to getting a prize at the end of the day for getting drops. We need these prizes to last a bit! I thought it would be harder for me, especially since he puts up a fight. It's not though.. I prepare him that we are going to get drops in a couple minutes and that he will get to pick a prize. I pick him up when it's time, sit him on my lap, lean him back and do it. He kicks, he yells.. but it's just not an option. I don't make a big deal out of it and tell him when he is done that he can pick a prize as soon as he is ready. This usually stops the tears and he picks a prize and we play with it. I know it won't always be like this. He'll get used to it and frankly, he has no choice. For as long as I have control, he will do what he has to to be in the best health he can. Some things are inevitable- but we'll prolong them as long as we possibly can. I will never look back and say that I didn't do everything in my power to make him okay. I try hard not to make anything a fight because once I don't have control I want him to accept and be okay with what he has to do. I tell him that I know it's not fun to put drops in his eyes, and it hurts to get blood work etc.. but that it only takes a moment and then it's over. It is.. It sucks, but it's over. Easy for me to say, it's not me, but I hope that he develops a similar attitude. On another note- can I tell you how awesome it is to have these little boys- brothers? Jordan ADORES Landon and Landon is so good and really enjoys being looked up to! The other day, I was on the phone and heard them both laughing. Jordan was in his jumperoo. I went to check on them and Landon was squeezing Jordan's cheeks and they were both laughing. Too cute! I do have to remind Landon that he needs to be gentle with his brother. I don't want to rush time but I really look forward to the days that they can play together. So, that's all for now. I will update again soon!!

What makes it hard...

As I type this, Jimmy is on the phone with the specialty pharmacy that will send us the eye drops that Landon will begin taking. My guess is that we will start putting the eye drops in his eyes within the next week. It's real now. It's going to happen. It's not a thing of the future. Landon's nephrologist said that we can try and if it's a disaster then we let it go for a while and try again. I feel like this is just another thing that he has to do. It's just not an option. I am anxious about giving him the drops, but have been assured by many parents in the Cystinosis community that this is the least of the worries. I have to remind myself that I underestimate Landon, I always do. I am realizing that as he gets older, in many ways this all gets easier but in some ways much harder. Taking his medicine is just part of his routine. Once in a while he tells me "No" when I tell him that it's time for meds but its usually because I am interrupting his fun. He has been complaining that his belly is sore (the site where the G tube is placed). I have had several doctors look at it and they all say that it looks good. But sometimes it gets pulled or I think he sleeps on it and wakes up with it being sore from the way he was positioned. He has been complaining more lately so I changed it tonight (I will get back to this)... Anyway, he told me yesterday that "it hurted" and asked me to take it out. I told him that when he is bigger and can take put his medicine in his mouth, that we can take it out. It made me really sad though... So, as I said, tonight I decided to change his Mic Key button. He knows what to expect now and my sweet boy tries really hard to be brave. He told me that he wants to do it. He laid on the ground with a syringe in hand and put it exactly where he needed to. I let him help me use the syringe to pull the water out that fills up the balloon inside his belly (to hold it in place). He was okay with that. Then I pulled the Mic Key button out of his belly. He let out a cry. I tried to quickly place the new one in but that's easier said than done. I made a funny face and told him to hold his breath and puff out his cheeks. He laughed but that quickly turned to a panic and crying. We hugged and he cried for another minute and told me that it hurts, then he wiped the tears away and started watching television. He understands more and wants to participate in his care. This is a good thing.. He is more verbal now so can communicate what he is feeling.. also good.. He is learning coping skills. What makes it hard is hearing him say that he wants something to go away when I can't take it away.

The Threes!

I have mentioned this several times before but it runs through my mind often. Right before we left the hospital, Landon's nephrologist gave us the advice to not treat Landon as if he is a sick child because a sick child he will be. I think we have done a pretty good job of this although I have to admit that I hesitate about parenting decisions at times because I worry about how it relates to Cystinosis and how he feels or what he has gone through... But I also may hesitate simply because I am a mom and it's hard to put my foot down at times or know how to handle certain situations. Yes, maybe it's that and nothing to do with Cystinosis. Our evening today was a perfect representation of how one could struggle a bit in having a child with special needs. It's no secret that we have struggled with feeding issues with Landon for some time now. Basically since he was 7 months old and stopped drinking the amount of formula that he needed to grow and thrive. He stopped eating anything at all and relied on the feeding tube for quite some time, then he pocketed food and now, hallelujah!, he is eating. Lunch at our house is pretty flexible. I give him a couple of choices and he tells me what he wants to eat. Today he had Mac n Cheese and ate an entire container (270 calories!)... For dinner I try to make things that I know he will like and won't have problems with eating. We want him to know that he is expected to eat what is served for dinner but I keep it Landon friendly too. We are also sure to only put an amount on his plate that isn't very much to expect him to finish. Today, I made a pasta dish and put 7-8 penne noodles on his plate. He took a bite and told us that he was done and that he wanted "strawsherries" (strawberries). We told him that he could have strawberries after he finished what was on his plate. Let the fit began, and it did... By the way, the child would eat strawberries all day every day. Too bad they aren't packed with calories! Then he asked for Mac n Cheese. We told him no, that he could eat his dinner and then have strawberries (fit continues).. He did eventually eat the rest of his noodles and had his strawberries. Part of me just wanted to give him Mac n Cheese because he would have gotten a heck of a lot more calories out of that than the few noodles he had for dinner today but it's not the lesson that we want to teach him. If it means that we can't cut back on his formula as soon, then so be it. Some may not agree, particularly those who know the complexity of feeding issues, but I know Landon and he is asserting himself right now. In many areas of his life, we are trying to enforce that he needs to follow our rules and that he doesn't not rule the roost. That leads me to bedtime. Landon has been an awesome sleeper for a while now... I had friends over one evening and I put Landon to bed as they were there. They commented how they cannot believe that he went right in and to bed. We've had the same routine since he was a year or so and it works for everyone. He wouldn't get out of bed unless he was given permission. It was wonderful. Then those weeks prior to him turning 3 years old happened and that all went away! In his defense, a baby brother probably hasn't helped the situation. My mom friends are probably so tired of me asking for more suggestions and feedback. Anyway, tonight began as most nights have- we read books, we say goodnight with hugs and kisses, and the "Mommy!!!!!!" starts... I go in and give him an extra hug and kiss. "Daddy!!!!" Jimmy does the same.. He comes out of his room- given a warning and put back to bed, comes back out. I close his door all of the way because he was told if he comes out of his room again, that's what I will do. He screams hysterically because the door is shut (I expected this).. He starts coughing and throws up the formula I gave him before bed and strawberries.. Nice.. I worry all the time when he gets worked up. It's not hard for him to throw up and then not only do I have to clean it up, but there goes the calories...We just can't let that fear prevent us from letting things happen and him learning lessons. Luckily he didn't throw up on himself so I told him to get back in bed, cleaned up and reminded him what the consequence would be if he got out of bed again. He did not... Thankfully because my favorite show and bed were calling my name tonight!

A Weekend to Remember...

We did it! Jimmy, Landon and I attended our first Cystinosis conference sponsored by the Cystinosis Research Foundation (CRF) this weekend. We left Thursday morning for Newport Beach, CA and returned home Sunday evening. Jordan stayed home with "Maw Maw (Grandma)" which was difficult for this mama but it was a good decision. It would have been much too hard on him. Where do I even begin? I could never include everything on this blog that happened and describe every emotion we experienced. It truly is a family and I have to tell you that to see a bunch of kids with Cystinosis run around just totally warms your heart. It was the cutest, sweetest group of kids ever! I know I am biased but I can't tell you how many times Jimmy and I looked at each other and said, "she is just too cute!" And the older kids take such good care of the little ones. The first time we left Landon with the sitters, he was very excited about the toys but afterwards was not happy when we tried to drop him off. One little guy took Landon under his wing and asked the balloon guy to make Landon a monkey and brought it to him. The Stacks (founders of the CRF) are incredible, incredible people. They are kind. They are knowledgeable. They are resourceful. They pour their whole heart and soul into finding a cure and we are so thankful for their support. I have mentioned this before, but Nancy Stack was the first person we spoke with after Landon was diagnosed. We did a google search, found the Natalie's Wish website and sent an e-mail. She responded to us so quickly and got us through the most difficult time in our lives. We so badly wanted to meet her and the people that work with her. And of course, such a special family has only the most wonderful people working with them to run the organization. We got the bigggest and most genuine smiles and hugs from Stacy and Zoe who are Nancy's right hand ladies! I think Landon may have had a bit of a crush on Stacy. He charmed his way into getting several lanyards that were being used for the name tags. =0) Our first conference day began with the families taking turns speaking in front of the group about our hope and inspiration. There were lots of smiles, tears, applause, hugs... Following this, the first day included a lot of background and information about Cystinosis. There was a ton of useful information. The second day was focused a lot on the research that is being done. We got to meet Dr. Cherqui which is a researcher that we have read lots about since Landon was diagnosed. She is in search for a cure! I blogged quite some time ago about the first stem cell clinical trial that they are recruiting for. It's not a study that Landon can participate in. They are looking for adults 18 and over with Cystinosis or anyone 13 years and older who cannot tolerate Cystagon. They are taking stem cells from a healthy sibiling (of the person with Cystinosis). It is very difficult to find a match (not just any person with Cystinosis with a healthy sibling is the perfect match that they need). No one has been recruited yet and they really don't know if anyone will be able to participate at all... The big study that was discussed is 3-4 years away from a clinical trial, at best. This is if there are no adverse events (complications in research). It will be a bone marrow stem cell transplant which will involve using the patient's own stem cells and genetically modifying them and then reintroducing in the patient. This has been successful in mice and Dr. Cherqui reported that this has been successful with other diseases. It would involve a round of chemotherapy. Another study that was discussed focuses on corneal cystinosis (crystals in the eyes). Landon does not yet present with crystals in his eyes but we know that it is coming. He actually is due to visit the opthamologist very soon. Those who have crystals are instructed to put eye drops in their eyes every waking hour of the day. Compliance is certainly an issue. Researchers have developed a wafer that has tiny cysteamine molecules that will slowly diffuse in the eye. Landon could put this wafer in his eye once a day, week, month etc.. depending on what they are able to do.. Regardless of how often, it is much better than putting drops in his eyes every hour! They are predicting that this will be ready for clinical trial (meaning that they will be recruiting participants) in 1-1 1/2 years. And, in other good news the 12 hour drug (to replace the Cystagon that we are giving Landon every 6 hours, including in the middle of the night) may be approved by April 30th. Ahh! So close! I was told by Landon's nephrologist that it shouldn't take long to become available to Children's Hospital in Pittsburgh because they have one of the larger numbers of patients with Cystinosis in the country. Ah! I'm excited! There was some discussion that you could only take it if you can swallow a pill, but thanks to my buddies in the Cystinosis community, I know that several kiddos with a G tube take it by mixing it with applesauce so that it doesn't clog the tube. A couple of friends of ours spent a month or so trying to figure out what to mix it with... Thank you! =0) Last but certainly not least, we were fortunate enough to have the opportunity to attend a fundraiser that the Stack's held while we were in CA. Words can't describe how incredible it was. The food was great, the room looked beautiful, people generously donated thousands of hundreds, thousands of dollars. Jimmy, Landon and I were asked to go in front of 450 people present at the event to present a check (one of those large checks) for the amount of money that we donated to the CRF last year which was over $19,000! We could not, by the way, have raised that money if it was not for our family and friends who help us to organize these fundraisers and who take the bull by the horns and organize their own! We have such generous people in our lives! A friend of mine, that I met through the Cystinosis community, told me this weekend that she can tell that we have a lot of support just based on the number of people who "like" and comment on my pictures and status updates on Facebook. We are so so blessed. So, thank you, thank you, thank you!

Updates

I'm sorry I have not posted! All is well, but so busy. Landon is doing so well and Jordan is such a good baby, but of course, I'm still working on getting into a good routine with the addition of our little guy. Landon had an appointment recently with his nephrologist. She is pleased with how well he is doing. As I mentioned, his cystine level is .03 which is well under our 1.0 goal, he has 100% kidney function (which hopefully means that a kidney transplant won't be necessary for a long time), his electrolytes are all within a normal range. She actually considered cutting back on his phosphorus supplement but decided to leave it for now. His phosphorus level is what we have struggled with the most. When he was discharged from the hospital I remember it being 2.8 and they wanted to get it to 4. Landon's nephrologist was a fellow and was supervised by another physician until recently. I remember that physician telling me that we might never get it to 4 and Landon's norm may just be in the 3's. My first thought was "no way, we're getting it to where it needs to be!" And it's there! Landon is still doing wonderfully at school. He tell his teachers that his brother cries all of the time (haha, which is very far from the truth)and is very comfortable with his friends and teachers. He is still going to therapy for feeding and his speech therapist (who has been working on feeding with him) has started speech. His speech has come a long way but he is still a bit behind. He loves therapy and adores Miss Shelly (his therapist). He is eating well and his therapist and nutritionist have wanted to cut back on the amount of formula he gets but his weight has remained the same since December so they are hesitant to cut back at all. This may have to do with the fact that on many days he doesn't get the total amount of formula that we intend to give him because he has been going down and waking up from his nap later than usual. I hate to give him formula too close to dinner so on some days he misses out on those calories. We have made it a priority to make sure that we get the total amount in him. Jimmy and I put some careful thought into when he should get the formula so that he consistently gets what he is supposed to. Hopefully we'll see a difference on the scale in a month. If not, we will add some formula to his diet. I have come a long way in my acceptance of the formula. I hated giving it to him for a long time. I wanted so badly for him to eat. Now that he is eating, I don't hate it so much... I think he eats as well as many kids his age. He tries most things that we put in front of him, has at least one good meal per day (in which he eats and gets a sufficient amount of calories... But, the difference between Landon and his peers is that he is still not quite on the growth chart and has some catching up to do. I posted on the Cystinosis group about the problems we are having in getting him to gain weight. One parent told me that she has been told that our kids need to consume more calories than most to gain weight because their bodies have to work so hard to function. It makes sense, right? Between that and the metabolism that he has probably inherited from Jimmy, the poor kid probably burns calories faster than he can eat them. Too bad he was blessed with my metabolism, right?! I do not have that problem! Lucky me, right?! On another note, I am SO SO excited to tell you that Jimmy, Landon and I are going to the Cystinosis Research Foundation's (CRF) conference in April. I am so excited to be a part of it- to have the opportunity to listen to presentations by researchers who are working so hard to find better treatment and a cure for Cystinosis and to meet our Cystinosis family. I have made such great friends around the world and am so excited to put faces with names. Jordan is going to stay behind in Pittsburgh. It's a bit risky, as per his pediatrician, to put him on a place and expose him to lots of germs in a poorly ventilated area. Plus, she told me in a very nice way that he really won't miss me all that much. =) It made me feel good to know that! He is young enough not miss me as long as someone is loving and caring for him. It's going to kill me to leave him! And I can't promise not to shed tears, but this is a great opportunity for us and I know he will be much more content at home. The conference is in California so we will be far from home! I think that is all the news from now!

Our Good News

The call from Landon's nephrologist came on Thursday. She had good news. Landon's recent cystine test (the level of cystine in his body) was 0.3. Our goal was to get it below 1.0!! All his electrolytes are normal which seems very clear considering that the child never stops running and has unlimited energy- just like an almost three year old should. She followed that by telling me that the lab processed Jordan's blood and that we would not have to have it drawn again (I think I posted about that in the last entry) and that Jordan's cystine level was .08. Everyone has traces of cystine in their body. Jordan does not have Cystinosis. I cried happy tears. And then I felt sad... Sad for Landon... Jimmy came home from work and told me he felt the same way. It's awesome news, but we grieved for Landon again. I posted in one of the Cystinosis groups on Facebook that I am anxious about the day that Landon asks me why he has to do things that Jordan does not. Many parents responded that it has really never been an issue, and that one young lady told her mom that she is glad that her brother doesn't have Cystinosis because boys complain too much. I told Jimmy that I hope Jordan doesn't get bigger than Landon at too young of an age. His response, "who cares?" Yeah, I guess I will probably care more than Landon ever will.

Welcome Jordan!

Wow, it's been over a month since I posted! Time flies when you are adjusting to life with two kiddos! Jordan Patrick was born on January 15, 2013 at 11:35am. He is a sweet at his big brother was as a baby, although recently it seems like he is becoming quite a firecracker. He knows what he wants and what he does not want and is sure to communicate that in the best way that his one month old body/personality knows how to. This means that he presses his lips together and gives a dirty look when we try to offer him a pacifier, yells out when I put him in the crib just a tad sooner than he is ready and protests loudly when we put him in the swing. He's sweet but fiery. Landon is a very proud big brother. He rushes to his side when he cries and asks to hold him often (he holds him for a moment, points to his facial features and names them, gives him a kiss and gives him back). I, along with my mom, took the boys to Children's Hospital last Wednesday. Jordan is now a month old and we planned to have them draw blood to check his cystine level. If it's elevated, it's an indicator that he does have Cystinosis and from there they will do a genetic test as a final confirmation. Landon was also due for blood work (he goes every 3 months now to check his cystine level and electrolytes) which by the way, all turned out beautiful. This could explain all of the energy that the child has- he's feeling good. His mom, on the other hand, doesn't have quite so much energy! Well, to make a long story short. There were 4 attempts made to get blood from Jordan. The first attempt was a success, but they did not collect enough. The final three attempts were not at all successful. The lab staff sent the first sample anyway, with hopes that the lab in California will accept a bit less than the usual protocol. We still don't know if they will accept it. So, we wait. I wish I knew that we were simply waiting for results and not waiting to find out if we have to start back at step 1, but it is what it is... So all in all, life is wonderful although a bit chaotic in our household. Jimmy and I feel as if we are always busy- changing diapers, giving baths, bed time for both, feeding (feeding, feeding, feeding!)... It's wonderful and exhausting all at the same time. We wouldn't have it any other way. =0)

Paging Dr. Landon...

Landon got some pretty cool items for Christmas this year! We have been busy with art projects (mostly drawing and stickers)... We tried painting but he refuses to wear a smock or change his shirt (on the couple occasions that we tried) so he is not allowed to paint until he gives in... He got some pretend play items like a castle, fishing box and doctor kit. The doctor kit was a must have this year... We wanted him to be able to explore, in a fun way, things that he experiences regularly. When we go to the doctor he always points to an instrument, hanging on the wall, and tells us which part of the body that instrument goes with. He doesn't at all mind when the doctor (not nurses- he gives them a very hard time!) listens to his heart and lungs with the stethoscope... Shots, band aids, the blood pressure cuff are all a different story. I watched him today put a band aid from his doctor kit first on his wrist and he said "I hurt" then on Daddy's wrist- "daddy hurt" and then on mine "mommy hurt." He put the blood pressure cuff on his arm and then gave Jimmy and I a turn then lastly, gave us all a shot (or maybe took blood?). I hope that it gives him a sense of control in this medical area in which none of us have much control over. There are things that he has to do no matter how much he hates it and no matter how badly Jimmy and I wish we could do it for him. A big fear of mine is that one day, when he is older, when I can't hold him in my lap, just put him in the car seat to take him to the doctor, when it's not enough to tell him to choose where he is going to sit and to ask if he wants to help me put it in the extender; that he might tell me no and refuse to go through this stuff anymore. So what do we do in the mean time? Be honest about what is going to happen (on an age appropriate level), give choices when we can, empathize (I'm sorry that it hurts and I know that this is not fun but it will be over soon)... Let him experience his emotions- we certainly went through lots of them since his diagnosis and will continue to do so but challenge him to be optimistic, count his blessings, be happy and be grateful.... Anyway, Landon is a resilient kid, a bright little boy... He is so sweet, happy and joyful with just enough spunk and fire in him to get him in trouble at times but also to beat whatever challenges are placed in front of him. I don't think we'll have to worry all that much about him! He continues to do well eating and we may even be able to wean him from the formula a bit. He has really impressed not only Jimmy and I, but his therapist and nutritionist. My expectation when writing my last post was that Baby Jordan would have joined our family by the time I updated again. That hasn't been the case. His mama is pretty uncomfortable and goes to bed each night hoping that he decides to make his entrance that night or the following day. The 15th is eviction day though... I am due at the hospital at 7am if he doesn't make his appearance before then. We are beyond excited to meet him and to be a family of 4 with two little boys! I got a taste of what I'm going to be in for as Jimmy and Landon threw socks at each other, and at me, today in playing a game of "snow ball fight." Our lives changed once, for the better, 2 1/2 years ago and I know it only gets better from here. So c'mon Jordan- Mommy, Daddy and Landon are ready to meet you!!

Welcome 2013!

Happy Holidays!! Our poor, sweet boy was sick Christmas Eve and finally seemed to be back to normal this past weekend although he still can't tolerate the full amount of formula particularly in the morning. He had a nasty respiratory virus and was so tired, so grumpy and just a big mess... Fortunately Jimmy was off work the whole week so I had help during the day. Despite his sickness, I'd say we had a pretty good holiday. Seeing Landon's reaction to Santa Claus, Elf on the Shelf, the Christmas Tree, the lights and so forth was incredible! It just gets more and more fun. He still asks for Santa aka Sansa although getting him to sit on his lap or get close to him is a whole other story! Despite being sick, he continued to eat pretty well and now that he is not only feeling better but still not getting the entire amount of formula that he was on before, he is eating REALLY well. You may be thinking that it's great and we should just stop giving him formula. It's not quite that easy although his therapist told me on Monday that we can really begin to talk about weaning him a bit. In other news, we will becoming a family of four any day now. My due date is not until January 23rd but about a week ago, my doctor told me that this baby is making progress and we should expect him within a week or two. I went through some major, ridiculous nesting. Last Thursday, the day I was told this, I pushed my body to the limit and paid for it afterwards! Again, fortunately Jimmy was home not only to help but to keep me a bit grounded. The thought of not being able to take care of my boy for any period of time makes me a nervous wreck. I have been away from him once before, for two nights, but he was with Jimmy who knows exactly what our day to day looks like. He knows how to do meds and give formula, he knows his antics and can comfort him just like I can. We are so blessed to have incredible family who are close by to fill that role when Jimmy is at the hospital with me but it's hard to put into words and charts and lists and notes (I'm trying, believe me!) what our day to day is like. Yes, I'm crazy.. I know.. I admit it, but it doesn't help my anxiety. I have to say though that we are so excited for Jordan Patrick to join our family! My body is ready be done with pregnancy- well I guess not ready enough because I'm still pregnant! This little guy has done a number on me which is not something I experienced with his big brother! I know that the transition will be tough at times, but I think that Landon is going to be the best big brother. I cannot wait to see him in that role. We do not yet know if Jordan has Cystinosis. The plan is, hopefully, to test the cord blood. A sample will be sent to the only laboratory in the U.S. that can run the test for Cystinosis. We hope to get it sent out ASAP and that we will have an answer by the time Jordan is 3 or 4 weeks old. So friends, the next time I post will probably be to provide the announcement that our second little boy has arrived.