Dear Me..

Dear Me Three Years Ago, Yes, you're devastated. You were told that your baby is not okay- he is sick. You have a demanding med schedule that is crucial to get him healthy. How am I ever going to manage all this you are wondering. Well guess what, you will. Every day won't be perfect. You will wake up at 5:00am every so often and realize that you didn't do his 2:00am meds. It's okay. The next night will be better. His phosphorus level is stubborn. It just won't get into the 4's- but it will. You are grieving over Landon's diagnosis and the fact that you won't have another baby, Landon won't have a brother or sister. Guess what- he will. Cystinosis won't scare you for very long. You can't believe that his doctors are consulting with you about what the next step should be. You don't know what Cystinosis is and certainly can't make decisions about how to treat it in your child. But yes, yes you can. You will learn what questions to ask. You will find supports in the Cystinosis community. Cystinosis will bless you in a lot of ways. Oh yeah- and it's okay for you to grieve, to get angry, to feel sad. You will do that over and over and over again- sometimes all in one day. You will tense up when the parent of a "healthy child" complains that their child won't eat, has a cold... They just don't get it. It's okay to feel that way, but you'll get over it. You are forever changed by the way, not for the bad, don't worry. You emotions are exaggerated and that won't really go away. You will get so excited that you can hardly contain yourself and when you feel sad or nervous, you will have to use those relaxation techniques that you learned about in grad school to calm down. And you know what, Cystinosis will not occupy your mind constantly. I promise it won't. He will be okay. The doctor was right in saying that he will be a normal kid with some bumps along the way. You vow to kick Cystinosis' butt. You will and so will Landon. Dear Me Two Years Ago, The doctors got Landon's meds figured out and he is getting healthier. You're still overwhelmed. His emotional health is so important too, and your baby is so anxious, so nervous, so timid. He is walking now! Yay! I know that he's really not eating yet, but keep at it. I know that all you want is to sit at the table or in a restaurant and to have him actually eat. He will. You have to be patient. You do a great job in managing his med schedule. Just accept the compliment when his doctors tell you that. You are doing a great job in making his life as normal as possible and you haven't let Cystinosis stand in the way of anything. Putting him in school was a good idea. When he goes to school by himself in the fall, it will be hard. He will not want you to leave. People will tell you just to go and that he will be okay. You will follow their advice after several weeks and will walk out leaving him to scream for you. The teachers will come to get you because he threw up. As you sit in the hallway, holding him with your head learning against his, you will cry. You will think of the years to come when you will sit at an IEP meeting educating the teachers and staff about Landon's disease and what special needs he has. You will think about explaining to the other children and parents what is different about him. Then you will pull yourself together and will follow your instincts. You will follow Landon's lead and one day he will say bye to you and will walk in the classroom by himself. You will be thrilled and it won't make you sad at all to see him separate from you. Oh and guess what- you are having another baby. Landon is going to be a big brother. Take that Cystinosis! Dear Me One Year Ago, He's come a long way. He's eating better, eating well actually! He is still very cautious and there are a lot of things that he just refuses to do. It makes you sad to see him afraid to go down a slide and to do other things that his peers do without a problem. Your trying not to blame everything on Cystinosis but man is it hard sometimes! He doesn't cry anymore when you go to the doctor and they try to get his height and weight. He actually cooperates happily. He's not so scared of people anymore. A substitute therapist came out to get him from the waiting room and he went back with her with no hesitation. He keeps growing consistently and is just about on the growth chart now! His health is great and the doctors credit you for that. You credit the doctors, genetics and research- that's all true, but please just accept the compliment. It will keep getting better. He will amaze you... Your life is beginning to feel normal. You are starting to trust that other people can care for Landon too. You may not believe this, but you will go back to work soon. It will be very part time but it will be perfect for you. You really won't believe this but you will go away for a weekend with Jimmy leaving the boys behind. You will depend on someone else to give meds and eye drops and Maw Maw will do just fine. Can you believe that he will be playing tball next year? Oh, and he will go to the park and will go right down the slide and will jump on that thing that spins and scream for you to push it faster and faster. Yep, he will. He won't need therapy anymore this time next year. He will start going once a month just for maintenance. You will think more about how to handle him refusing to clean up his toys and whether you should let him play bad guys and with swords than you will Cystinosis. Seriously. You will stop worrying about whether or not Landon can keep up with his friends next year because you will struggle to keep up with him. Oh and that anxiety and social stuff, don't worry about it. He'll still be cautious which you will appreciate but he will start making friends easily and will have a lot more confidence. Yours truly, Me today

Cystinosis, what?

Happy Summer Friends! These past couple of months have been pretty eventful! We went from celebrating a special little boy's 4th birthday to our first cruise to our 3rd Annual Lots of Love for Landon Golf Outing! There were close to 100 golfers at the event that was organized by two of my awesome brother in laws, Jason and Jason, along with our great friend Brad. These guys worked super hard to make it a success and that it was... The event raised over $17,000! Woohoo!!! Each year the events get better and better because we learn so much each time- I also speak of the Halloween party that we have in November. It felt well organized and we have more volunteers each year. Landon and Jordan were present the whole day thanks to the watchful eyes of their grandparents. Landon is becoming much more comfortable in front of people and around people so can be quite a little ham now. Landon had an appointment with his nephrologist a couple of weeks ago. His electrolytes looked great and were within a normal, healthy range. He is growing beautifully and she had nothing but good things to say. I learned today that his cystine level was .85 which is good because we want this number to stay under 1, but it has been .4 so for me, it didn't feel as good. A cool thing, I may have mentioned this, is that we have not increased any of his supplements or stomach medications in a very long time which is great because he is growing and it would make sense to have to increase the dose but we have not had to which indicates his good health. Cystagon will have to be increased as he grows so an increase does not mean anything bad for his health. I was told that Landon is on the higher end of the recommendation for his dose which is perfectly okay with me. I have been told by some parents with older kids that we should put Landon on the highest dose of Cystagon that he can tolerate and fortunately, Landon has not had any trouble tolerating the higher dose for his weight. If we increase, the new dose will be just slightly above what the recommendation is so Landon's doctor gave me the option of keeping him at his current dose or increasing and seeing how it goes. Her concern is not about side effects but how well he will tolerate it. I decided to give the higher dose a try but not to push it too much. So, we'll see how it goes. I learned from a friend that .4 is the level that someone who is a carrier of Cystinosis would have (Jimmy and I), so to have his level there makes me feel pretty happy. Hopefully we can get it back there. I have to tell you that my thoughts and challenges lately are more about the usual challenges of being a parent and worries that come along with that than Cystinosis. Lately, the challenging areas of life involve weaning Jordan from that darn bottle before nap and bed time and keeping him out of the refrigerator, garbage can and toilet; and handling the battles of cleaning up, using kind words and listening with Landon. I am grateful for this, although I may have to be reminded how good life is when I'm battling with children about taking naps and not destroying a room the moment I walk into another. I think we are in a transition from being parents of babies to being parents of little boys, of kids. It seems to a whole new territory, but I have to say that there are a whole lots of laughs and messages to Jimmy while he is at work that say, "Days like today make me happy to head off to work this evening," and "Dear God, make me a bird so I can fly far... far, far from here.." (Forest Gump if you didn't know). They are super cute though! Jordan is imitating a lot of words (thank you is my favorite) and loves to sing! I have the cutest video of him singing along with me to Old McDonald Had a Farm. He is officially a walker now and looks look a little old man running those chunky lil' legs around the house. He is just as kissable and lovey as they come! Landon is such a cool, little guy to be around! We have great conversation and I'm so impressed by what he remembers and how he interprets things. My explanations to questions now aren't as simple and brief as they used to be and he understands what I'm talking about. He is getting to be so big but still likes to be held and cuddled. The other day he told me that he has a secret for me and then whispers "I love you." He followed that by telling me that he misses me when I go to work. I wanted to tell him that mommy will never go to work again! I love watching him with his friends. Today he asked me who my friends are and I found myself identifying my friends by who their child is... Both boys notice and remember things just like Jimmy does which worries me because I realize that I probably don't stand a chance against them individually and certainly not as a whole. The dynamics in our family are starting to settle in and I'm learning that they are all either loving me like crazy or are teaming up to torment me. Either way, mommy gets a lot of attention in our household. I am truly a luck lady... =)