Busy Days

Busy, busy here in the Hartz household and all wonderful things! We took our first vacation last week to Cedar Point. It went better than expected in that Landon napped, slept and traveled well! We have such a great routine at home and mama is particularly persistent about keeping with that routine. Daddy is a little more willing to be flexible which worked out great for vacation. Our little guy particularly enjoyed the new animated dinosaur tour that we experienced. Rides? Not so much! Landon doesn't appreciate not being able to sit on our lap and he seems to know when it is not an option so was very unhappy. I love to ride and have visions of riding roller coasters with my boy as he gets older so I was admittedly a little bummed. But he is only two so I still have time to "encourage," right? This trip made me extra excited about our upcoming trips to the beach and to Hershey Park! Yesterday was our first annual Lots of Landon Golf Event. It was a great success and we are so grateful to our brother-in-law and his good friend who planned it. Jimmy and I learned so much!! There were 65 golfers there despite the record breaking 99 degree weather!! Everyone seemed to have a blast ands we were overwhelmed by the generosity of so many who have never met us or Landon along with our family and friends. There is already talk of next year's golf event!! I will post more about it with a link to pictures soon!! As you know, last month was the first anniversary of Landon's diagnosis. We have experienced lots of firsts over the past year. Around this time last year, we went to Jimmy's cousin's daughter's birthday party. We surprised everyone by going because Landon had just been discharged from his month long hospital stay. With some anxiety, we packed his meds and feeding tube and ventured out on our first outing with a little guy whose special needs we were still getting used to. We realized that day that nothing would stop us from experiencing life and that this would all become normal for us. And, it has! We are a good team- Jimmy and I have always said that. And we are surrounded by incredible people!! We are so blessed... Landon is so blessed... And this little peanut that will join us in January will be just as blessed...

Poor Boy

Oh my poor boy... It began on Sunday. We were having a great day celebrating the wonderful daddies in our lives but we realized around dinner time that something was off with Landon. He was tired, over heated, a bit lethargic and felt feverish. We got him home and he vomited as soon as I hooked him up to his nightly feed. We replaced his milk with Pedialyte and hoped for the best. It was a rough night and Monday morning I called his nephrologist. Dehydration is not good for anyone but can be very bad for a kid like Landon. I packed our bags, made some phone calls and prepared to go to Children's ER. But then, he seemed to get some spunk back do I attempted Pedialyte again. He kept it down so his nephrologist gave some recommendations and I decided to try to keep him at home. The next few days were spent with lots of clean up, interrupted sleep and cuddling but he began to seem better. Then the cough, sneezing, runny nose and congestion began.. So that's where we are... Very limited formula and cautiously giving meds.. This too shall pass, right? :0) He is such a trooper and such a funny little boy. He is learning to cover his mouth when he coughs and sneezes. He wipes his nose with Kleenex. He makes me laugh! We had a great visit with his nephrologist today. We at so blessed to have such incredible doctors taking care of our boy- all of them! His kidneys continue to function as well as any child his age. His cystine level was at 1.2 and we want to keep it below 1 so once he recovers from the sickness, we will increase his dose by 25mg. He is consistently growing and gaining weight and has actually grown over 2 inches in the past 3 months. Wow, right?! There are a couple things that they want to check- X rays to see how his bones look and if his rickets is under control and copper levels. Apparently there is a correlation between increased copper levels and being on too high of a dose of Cystagon. So there are some updates. We have severally vacations planned so hopefully our boy gets healthy again so we can enjoy the summer! Oh and one final note- the Lots of Love for Landon Golf Event is scheduled for July 6th. If you do not golf, we have dinner and a Chinese Auction to follow. Dinner is $25 per person and will start around 5pm. I hope you can join us! E-mail me at LaurenLHartz@gmail.com if you would like to join us!

Special Needs

A little while back I posted about a great life lesson that I witness while watching Barney with Landon. He is still a big Barney fan, by the way.. Well today, Jimmy asked me if I saw the episode of Barney with the little girl who is shy. I told him that I saw it for only a moment but asked what it's about. He was watching it with Landon and said that there is a little girl who is very shy. Baby Bop (one of the characters for those who don't watch the show) continues to try to get this little girl to play with her. The little girl clings to her mom and the mom continues to comfort her. The girl begins to warm up to Baby Bop after some time and the mom confides in Barney that her daughter has some special needs and that it's hard for her at times. I told Jimmy that I had seen that conversation but did not know what the special needs were. They didn't say, he told me.. Then it clicked for me (it took longer than it should have, but I will blame that on morning sickness and being fatique!)... The message was that disabilities and special needs are not always visible and that it is important to be understanding. Obviously I thought of our sweet boy. He can be very shy and as I have mentioned, extremely cautious and anxious in certain situations. Do I blame Cystinosis? Not necessarily, but Landon has been through lots of things that most kids his eyes have not experienced and certainly not on a regular basis (countless blood draws for example)... So, some of his uncertainty and anxiety could be that it is merely his temperament, but in some ways, I imagine that he is affected by the pain and discomfort that he has experienced. Today we took him to a local spray park. It was a great place and we look forward to going again, but our little guy clung to us with every ounce of strength he has... We encourage him and we push a bit for him to try things, but we respect his wishes for the most part. So, we did carry him around that spray park. You may be thinking that plenty of children who do not have an illness respond the same way to new situations, and I know that. I do not blame Cystinosis for everything. But there will be times when Landon's life experiences and this disease will serve as a barrier for him. My hope is that the world will treat him as Baby Bop treated the little girl- with empathy and kindness.

Family of Four

I feel okay to put this in writing- Landon is going to be a big brother! Jimmy and I saw the heart beat for the first time today. Very cool and a little unreal... We will be welcoming this baby at the end of I posted a while back about my desire to add to our family. It was a very difficult decision that Jimmy and I carefully thought out since shortly after Landon was diagnosed. At first we both said absolutely not. We could never go through, nor put another child through, the drama that we all experienced a year ago this month. But life has calmed down and we have adjusted to our new norm. And we are loving life! There is a 25% chance that this little peanut has Cystinosis too. If so, it means that he/she and Landon will understand each other in a way that none of us ever will... If not, wonderful! We are at peace with it- either way... We are so so blessed!!

The Big Weekend Away

What an incredible weekend! Jimmy and Landon managed well without me and I survived my first nights away from my baby boy. I flew to Atlanta on Friday to participate in a Patient Feedback Session held by a marketing group who works closely with the pharmaceutical group, Raptor, that created the 12 hour drug that will, hopefully be approved, to treat Cystinosis. There was a very small group of caregivers and preteens/teens/adults with Cystinosis. It was my first opportunity to meet anyone with Cystinosis in person. I don't know why I was asked to join the group but I will tell you, I feel so blessed to have had the opportunity. I will also say that it makes it even more important to me, for our family, to attend a conference in the near future. I had the opportunity to share Landon's story, our story with people who totally get it. I cannot tell you how it feels to share something about Landon and his behaviors and witness that all knowing look of another parents face, whether they are parenting am almost 2 year old or a 16 year old. I am even more excited about the possibility of this 12 hour drug, RP103, being approved by the FDA. I am even more optimistic about my baby's future. I feel even more empowered as a parent with a child with special needs. Because of the Cystinosis community, I am able to work as a partnership with Landon's amazing doctors rather than being totally dependent on them for information. It's a great feeling. I was also reminded that there are incredibly kind and compassionate people in very important positions who are committed to improving the quality of life of people in this community. How awesome is that? The people who work for the marketing and pharmaceutical group have been to the Cystinosis conferences. They sat with us and talked about our kids, told us about their lives and families, about their passions and asked us about ours. I cried once (good tears) and laughed a whole lot. So, I am better informed, full of hope and had a blast!

Baby No More..

I haven't posted in so long, my goodness!! There is a little 2 year old in our house that is keeping us very busy.. Our days consist of a walk in the morning while Landon is getting a feed; either therapy (includes Physical Therapy, Occupational Therapy, Speech Therapy or Nutrition), errands or playing outside, nap; more playing outside or errands, Daddy comes home- we eat dinner; either go for a walk or play with the neighborhood kids at the park and then bed.. I love every moment of it!! We have such a little boy now. There is no existence of baby in Landon anymore. It's a teeny bit sad, but so exciting! I love that he is growing and thriving so well!!! He wants to walk and walk and walk and walk and play and play and climb and climb... He keeps me so busy!! I think I have mentioned this before but he is such a copy cat!! He imitates EVERYTHING, particularly Jimmy. His energy level goes from about 8 before Jimmy gets home to a 10+. He hears the garage door open or sees Jimmy coming up the walkway and he yells "Dayyeeeeeeeee!!" He runs to Jimmy and shortly after begins his famous "See, see.." He pulls him by the finger and wants him to "see" something which usually is his train table or race track in the play room. It's the funniest thing! Our newest milestone is that he sits at the table by himself for meals (not at the high chair and not on a booster seat). He absolutely refuses to sit in the booster seat. It's comical because his chin barely reaches the table, but he does a great job of sitting there and has been eating fairly well. His favorites are angel hair noodles with red sauce or italian dressing on it, and almost anything with Ranch dressing. He has taken a liking to Diary Queen soft serve vanilla cones. He and I share a cone at least once a week. =0) He usually eats the scoop of ice cream and leaves me with a soggy cone and the ice cream in the cone. So, I am doing something that is a pretty big deal this weekend. I am going away, by myself, to Atlanta GA for the weekend. I leave tomorrow (Friday morning) and will be home Sunday evening. I will share more about what I am going for after I return. Nothing secretive, I just don't know much about what we will be doing quite yet. I am excited, but understandably a bit anxious to leave my little man for the weekend. Jimmy knows exactly what to do and is well prepared to handle any situation that arises, but I have never been away from him overnight. My anxiety is purely because I will miss him. But it sounds like there is a fun guy weekend planned for my two loves. They are planning to make Landon's first visit to the Children's Museum which I know will be a ton of fun. And, the two of them just have a blast together whether it be a planned activity or running through the house, each with a hockey stick in hand, yelling and making a ton of noise. Well, I will certainly have some updates next week and promise to try to do a better job of keeping up with this blog!!

Blessings and Prayers

All is well in the Hartz household... We have been busy planning our summer and we're definitely going to make up for last summer! We will be off to Cedar Point in June, Ocean City in July and Hershey to attend a Wiggles concert with some of my great friends. Landon is a huge Wiggles fan and Jimmy and I are fans because our little guy loves them. We've had plenty of laughs as we watch him dance to the songs. On another note, less than one month ago the Cystinosis Research Foundation (CRF) hosted a conference in California. We did not attend although we were pretty bummed not to go. We had so much going on in April and I had a bit of anxiety about getting on a plane and traveling across the country with Landon. He's so well behaved but he's 2 and I'm not sure how he would handle such a big change in his routine. I should give him more credit than I do, but we decided that this year was not going to be the best year for us to go. There was lots of chatter amongst those in the Cystinosis FB Group about what was discussed and presented. I was so jealous! The rumors I heard are that there is some promising research coming out one of which is to offer better treatment for the eyes so hopefully people with Cystinosis will not have to put eye drops in their eyes every waking hour, or as often as possible. To think that Landon may go to school and we won't have to worry about putting eyes drops in his eyes as often as possible is mind blowing! I also heard a rumor that a study would begin recruiting that would look for a cure. A cure! Yes, a cure! I spoke with Nancy Stack (founder of the CRF) yesterday and she confirmed it and told me that information would be available later that evening about recruiting and who they are looking for. Now, this is not a study that Landon is eligible for and actually there is a very specific population that they are looking for.. But, oh my goodness, there is actually a study that is looking for a cure and human subjects are being recruited. Nancy assured me that there are wonderful studies to come. It's all just such a blessing. Landon is part of a very small, special population and to know that there are researchers committed to making the lives of Landon and all those with Cystinosis better, is amazing and such a blessing. This leads me to our upcoming fundraisers... There will be a golf event on July 6th. We are in search of golfers, donations for our Chinese Auction and business to sponsor holes. E-mail me for more information LaurenLHartz@gmail.com. We also plan to have our 2nd annual Lots of Love for Landon Halloween Fundraiser in October. We had a blast last year. I will provide additional information as it becomes available.