This week was dedicated to doctor's visits for Mommy although I had to cancel my dentist appointment because I was pretty sick yesterday. Thankfully it was short lived and I feel back to normal today. Anyway, I did up end in the same waiting room and exam room as I got used to being at when I was pregnant with Landon. The last time I was there was 6 weeks following Landon's birth. And let me tell you, it was so depressing to sit there and know that there was not a baby growing in my belly. Our "plan" was that we would try to give Landon a baby brother or sister by the time he was 2 years old which would mean that I anticipated walking into that waiting room again feeling nauseous and excited to go through the next 9 months again despite morning sickness and heartburn. What I remember clearly is placing my hand on the top of my belly and rubbing it, or feeling those kicks that always were a pleasant surprise and made me smile. There were parts that were not so fun about being pregnant, but there were plenty that were awesome and especially the end result. It breaks my heart to think that it might not happen again.

What also breaks my heart is to think that Landon might grow up not having a sibling. I know that there are many many many perfectly happy only children in this world and lots who prefer it that way. And I know that Landon will have cousins and best friends with whom he will have a very special relationship. But, I have an incredible relationship with my sister and Jimmy has the same kind of relationship with his brother and sister. And, we are close to each other's siblings and their spouses. Yes, we are all just one big happy family! Corny, but true. My sister knows me and understands me in a way that no one else ever could (same with Jimmy's siblings). And someday Jimmy and I won't be here, and I want to know that Landon has "that person." You may be thinking, well just because two people are siblings doesn't mean they are close or that they will take care of each other. Thank you my devil's advocate friends. =0)

On that note, I have prayed since I was pregnant with Landon, that Jimmy and I would be the best parents to him that we can be and that we would always make the right decisions for him. Ironically, I never remember praying to have a healthy child. Either God was preparing me for this or I took for granted that I would have a healthy child (maybe a little of both!). But, I just have to trust that Jimmy and I will make the right decision in choosing whether or not to have another baby in the future. We have a 1 in 4 chance of having a child with Cystinosis. I can tell you one thing, if we do choose to get pregnant and have another child, the moment we find out that I am pregnant will be the scariest and one of the most exciting moments of my life. I often look at Landon and how beautiful, smart and incredible he is and I think, who cares if we have another with Cystinosis. As Jimmy said, "I wouldn't trade Landon for 50 healthy kids." But, I'm not living in Landon's body.

I honestly did not mean to go into such detail about all of this. This has been a discussion between Jimmy and I since Landon was diagnosed. But, I guess it's really no secret. People ask us often if we plan to have more or not, because of what's going on with Landon. And for anyone who might be interested, they can perform an amniocentesis between 10-12 weeks of pregnancy to determine if the baby has Cystinosis. So, we could find out very early. We would do this, not to terminate, but just to know...

Okay, so on a happy, positive note- not that this post has necessarily been negative.. BUT, my mom and I ventured into the mall today without a stroller and Landon, first in my arms. We had to keep handing him back and forth because he was getting too heavy to carry! And, he has consistently been eating this week. He really seems interested in food and is enjoying it! He loves goldfish crackers and today he had some vanilla ice cream and macaroni and cheese. He regularly says new words but it is very random and not necessarily predictable. But, he talks so much and so loud, and I swear to you, it now sounds less like babbling and as if he is speaking in some other language. It is so funny to hear him. He consistently says Hi and bye. He said dada and mama very clearly and with purpose. He blows kisses, gives high fives, low fives and pounds. He says "me" when he wants something. Ohh- he is just so much fun! No wonder I want another one!

Landon's World

It is Landon's world and Jimmy and I are just living in it! My sweet little angel boy has become quite a little character! He wants what he wants when he wants it! I actually attempted time out with him a couple of days ago. I never expected to give my almost 18 month old a time out, but redirection and saying "No" was just not cutting it. Landon has gone from being BFFs with our dog Rocky (not necessarily by Rocky's choice) to victimizing him! Rocky was chewing on his bone the other day and Landon repeatedly (despite my attempts to redirect and tell him "No") tried to take the bone from him. When Rocky wouldn't give it up, Landon proceeded to hit him. When I removed him from where Rocky was and said, "Landon, do not hit the doggie," he hit me. So, I sat him on his Elmo chair and told him that he has to sit because he was not nice to Mommy and to Rocky. He may not understand time out, but he did know that it was not good that he was made to sit in his chair. He tried to hit me again and pulled out a pretty serious puppy dog lip (he has perfected this one!).

And let me tell you, I dread the cold weather coming because this little boy is very persistent about going outside to play. What will I do if he is not walking and wants to crawl around in the snow? Ohh noo, please Landon start walking before the snow comes!

I have to admit that I smirk as I type this... I LOVE that Landon has some fire in him now and doesn't just go along with whatever we say or do.. He has an opinion and he is learning to voice that opinion. And on my, is he dramatic when he voices it. He throws his head back, flaps his little arms and gives that puppy dog lip. It takes everything out of me not to laugh hysterically! Which reminds me, he had his first big boo boo last week. I left the kitchen (where he was playing with his magnets) to put the vacuum away. As I walked back in, I witness him falling forward onto the ground. He bit his lip which results in a good bit of blood. I felt terrible! I rushed to comfort him and grabbed a wet rag. My attempts to wipe the blood from his mouth resulted in a very angry and hurt Landon throwing the wash cloth! After throwing it several times, he told me off in a way that I've never been told off before. Holy cow! He did not care about my apologies or attempts to comfort him. He was mad and he wanted me to know..

We have quite a little firecracker on our hands! I love it, but I just hope that I can keep up!

Take the good with the not so good..

Well, the wedding was wonderful! Everyone had a blast, Jamie was a stunning bride and Jason made a very handsome groom!! Landon kept his formula in his belly! He even stayed at the reception until about 10:30pm, incredible. I knew when I began to carry him around like I did when he was a newborn, rather than the wild little toddler that he is now, that it was time for bed. He actually slept in the pack n play too which was pretty unbelieveable to me. I just have to give this little boy more credit than I do!

More exciting news is that Landon started "school" this week. We planned to enroll him in a pre-school program next fall, after he turns two years old. But, we heard about a Mommy and Me program just a few minutes away from us and after much debate, decided to go for it! So, every Tuesday, Landon and I will attend pre-school from 9am-11am. It's wonderful!! I think that he is going to learn so much-education and socially! The teacher seems wonderful and it is a small class of just 6 which includes two of the little guys in our neighborhood. I'm always concerned that I don't know just what Landon is capable of right now. I'm familiar with ages 3 and older, just through my previous work experience but this is a strange age for me. I want to encourage and challenge him, but not to the point of pushing him to do something that he's just not developmentally ready for yet. So, this is perfect! He really seemed to enjoy it. He actually nibbled on a cracker at snack time which was awesome since he had been refusing anything over the past few weeks. He colored on a piece of paper that will be turned into a fall leaf (so cute!), he participated in singing and dancing (with help from Mommy of course) and listened to a story.

I will also mention that Landon actually has been eating! It's certainly not enough to cut back on his feeds (don't worry, I learned!)but we are thrilled! I don't know what changed but I won't question it.

So yes, there is lots of good news but I do find that I have an extra hard time dealing with the little setbacks we have when things are going so well. For example, last night, Landon fell alseep at bed time only to wake up crying about an hour later. I let him cry for a few minutes and then went in to check on him. He quickly got himself worked up because I wouldn't pick him up and began screaming. Screaming is pretty much always followed by vomiting. So yes, he threw up. I immediately felt my eyes tear up and became so frustrated. Luckily Jimmy was in the othe room so helped me by cleaning Landon up while I changed the sheets. This is a fairly regular occurance lately with Landon and usually I quickly change the sheets and him in the blink of an eye and move on. No big deal, right? He got upset and that's what happens when he cries hard. But last night, it didn't feel like a big deal. And again, I know it's because when things are good; I want them to stay good! Sometimes I just need a kick in the butt to remind myself that little things like that are going to happen and it can't replace all of the wonderful things. That's why I blog!

Here Comes the Bride, Groom and Landon...

Landon is a pretty lucky little boy. He has been honored to be included in two very important events in our family, my sisters wedding back in May and now Jimmy's brother's wedding this weekend! My sister's wedding, pre-diagnosis, went smoothly. At the time, he was vomitting a good bit, and I was so anxious that he would throw up all over his adorable little 6-9 month-still way too big on him tuxedo. Well he didn't.. I carried him down the aisle and he was as good as gold and the wedding was as perfect as could be!

So, here we are, in his second wedding with a diagnosis of Cystinosis and some special needs. I am a bit anxious about everything, because I wouldn't be Lauren if I weren't a bit anxious about everything going smoothly! I have a plan going through my mind constantly. I will do his first feed,then head over to the beautiful bride's house to get my hair and make up done, Jimmy will get Landon down for a nap around noon (maybe a little earlier!) and my mom and dad will come over at 1pm so that Jimmy can go to his sister's house and meet the groom and groomsmen for pictures and to head over to the church. My mom will get him ready, or maybe I will at the church, and hopefully he sits nicely in the wagon that will be pulled by his adorable cousin in her flower girl dress.. Will he sit with me or should I let him sit with one set of grandparents? Hmm.. and will I have time to get his feed and meds together at 4pm so then my parents can take him to the reception? Hopefully he doesn't throw up at all because we've been having some belly issues again. And well now, he has been going to bed a little earlier so how will he handle being up late and we are staying at the hotel so hopefully they have a crib set up, like we asked, but just in case we'll put his pack n play in the car... Yes- this is your brain as Lauren Hartz...

Despite the constant thinking, wondering and hoping going on in my head. I can't wait for this weekend! I will post pictures!!!

Oh, and I would like to note that he is still wearing a 6-9 month tuxedo, but it actually fits!!!

Intentions

"He's so little." We've heard it for a very long time. We are not offended by it, but I used to find that I felt like I had to explain why he was little even to complete strangers who I would never again see. Well, I explained it to the best of my ability before he was diagnosed. "Yes, he is. He's not a great eater and it's something that we are working on with him."

Well, he is still small and I still struggle with how much information is necessary. We were at a friend's house the other day talking to some great people. One mom asked if he eats well. So I explained that he is fed through a feeding tube and that we try to squeeze regular food in there as much as we can. Well, obviously that warrants additonal information so I started talking about the disease. Then I felt like a downer and that I monopolized the conversation. Soon after that, Landon was due for his Cystagon which really needs to be taken as close to "on the dot" as possible. I stood in the bathroom preparing his meds and asked Jimmy if he wanted to bring him in the bathroom or if I should bring it out there. Jimmy told me to bring it out there and that "it's quick." So I did and it was no big deal.

Here's my struggle though- I want to raise awareness. I want people to know that this disease exists. And, I never ever ever want Landon to be embarassed or ashamed of his disease, or feel that he has to hide anything. I love that he lifts his shirt up to show off his belly as he gives his Mic Key button a quick spin (ok, that makes me nervous but you understand, right?). But on the other hand, I don't want Landon to be defined by Cystinosis. He has a disease, but that is not who he is. I don't want Cystinosis to be the topic of conversation all of the time because there is so much more to him. And anyway, besides the feeding tube and medication, he is like any 17 month old little boy. Can you understand my struggle?

On another note, at his last weight check, he weighed 17lbs, 10oz. Watch out!! We actually are not going to go back until his 18 month appointment unless something comes up before then. I did, however, change his feeds a bit in hopes that he may become hungry at some point and so that we don't feel as if we are a slave to his feeds every day. He is now getting fed 6oz every 4 hours instead of 5oz every 3 hours. So far so good..

And, to end this post, tomorrow will be 10 years since our beloved country was attacked. I pray for all of the people affected by this incredible tragedy. I will never forget where I was and how I felt upon hearing the news. Many things have happened in these 10 years- I met Jimmy only weeks after 9/11 and a new chapter of my life began but I, along with the rest of America, WILL NEVER FORGET.

I have to share this song. It will bring tears to your eyes. Be prepared!
http://www.thundertreats.com/articles/awesomeness/heaven-911-september-11th-2001-nyc-tribute-kluc.html

Lots of Love for Landon Halloween Fundraiser

I just wanted to remind you that we are having our first hoping to be annual Lots of Love for Landon Halloween Fundraiser on Oct 21st at the Home Economics Room in South Park. If you would like to come, please send me an e-mail with your e-mail address at LaurenLHartz@gmail.com. Evites will be sent out soon!

"Eeeeeeeeee!!!"

Sorry I haven't posted in a while! Life is well, but very busy! Since I last posted, Landon cruises around the house with his cart like a pro! It is very funny. And now, thanks to his Daddy, yells "eeeeeeeeeee" (weeeeeeeee) the whole time! He has also has become very good at climbing up the slide backwards (he's not the rule follower that his mom is!) and slides back down on his belly. I don't mind because I feel like that is probably strengthening his legs.

He is continuing to use baby sign and the other day signed "sleep." I was thrilled! And today, I asked him for a kiss. Usually he puts his cheek against my lips but instead he came straight at me using his mouth. He's such a loveable little boy!

As you can see there is lots of good things going on. He goes for a weight check this week so hopefully I have good news in that area again! I got a call from the nephrology nurse. She told me to increase his Cystagon because his Cystine levels were raised a bit. I was bummed, but it really is to be expected. Plus, he is putting weight on which is going to result in needing an increased dose. I also had been mixing the Cystagon with his formula any time that he is sleeping. The nurse told me that it's better to put it directly into the G tube, so maybe doing that will make a difference too.

He had an interview with The Alliance for Infants and Children last week. He is getting Physical Therapy right now, but I took him out of the program that he was in. It required us to drive to Wexford, which took about 45 minutes and we had to be there at 8am. This meant that I had to wake him up earlier than when he is used to getting up and change the time of his first morning feed. He still experiences a lot of anxiety when we are there so I think having the PT at our house, in his environment, will help. He is going to go through a thorough evaluation in the next couple of weeks. At this point, the plan is to have PT and Occupational Therapy (for feeding issues) come to the house but the final decision will be made after the evaluation. I am really excited about all of this because then I will feel like we have all of our bases covered.

So all in all, things are well!!