Optimism and Hope

The title of this post feels very appropriate since it is Martin Luther King Day...

Well, I am feeling MUCH more optimistic since the last post. We are back to 3 feeds during the day and an overnight feed. Landon has actually made a good bit of progress in eating over the past few days. He asks (verbally and signs) "eat" all throughout the day. Last night, he asked to eat right before bed, so I offered him a piece of cheese. He ended up eating the equivalent of about half a slice of cheese. Not bad, right?! He also ate half a small container of macaroni and cheese yesterday and had about 8 bites of angel hair pasta and spaghetti sauce today. I am actually feeling good about these feeds too. It means that he is getting the nutrition he needs and any of the food he eats is a bonus (big bonus!). I know that he's not ready to be weaned yet and honestly, I don't know if I can emotionally handle counting calories and stressing about how much he puts, or doesn't put, in his mouth. I am really excited for his weight check this week!!

He has a new trick too. He holds food in his hand and waves it in front of our dog, Rocky, all while hysterically laughing when Rocky quickly moves his head back and forth and in circles. He is such a sweet and laid back little boy, but he definitely has a very mischievous streak in him. He certainly looks like his daddy and he acts like him for the most part, but he does have a little bit of his mama in him (the laid back part!).

On another note, I was asked to contribute to a handbook that is being created to distribute to families whose child is diagnosed. What a great idea! I think it'll be such a valuable tool for parents who are trying to figure out this whole Cystinosis thing. I'm hoping that we can get a hold of a copy. Anyway, of course I was honored to be asked to do this. I feel honored for all of the opportunities I have been given to share Landon's story. But, when really thinking about what I planned to write, the importance of a resource like this really hit me. I want to be honest but I want optimism and hope to radiate through. We've faced some hard times through all of this, but we have learned so much through it all and our baby is thriving! I know that this disease is progressive and that there are many hard times ahead, but it's going to be okay. I hope that a parent like Jimmy and I reads what I have to say and breaths a little sigh of relief. We still have so much to learn about this disease and we don't know what lies ahead, but its all manageable and there will be many many more good times ahead than there will be difficult times. I hope that I can express that to a family who just got the shock of their life. There is hope and a lot of it!