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!