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..