Big Boy

Slowly but surely, my baby boy is becoming a big boy. I pride myself in the fact that I never wished away time. I loved being the mom of a newborn. I used to lay him on his boppy in the morning and we would lay in bed and watch tv for a little while in the morning. I feel like I appreciated all of those moments when he was very little. I was amazed by him. Why would I wish away time? But, I will admit. I feel like we've had a baby for quite some time. I am so excited to have a little boy that runs around, who tells me every detail about a story, who I remind to use his manners. Some may say.. ohh just wait. You'll wish for the days that he was little. I don't think I will.. I have loved those days, but we're ready to move forward. Yes, I said "we." I think Landon is ready to be a big boy. Walking has been a big deal. We encourage, we praise, we hope, we have been working with a physical therapist. It's up to Landon now. He has been regularly taking 4-5 steps to get one from one place to another. His big motivator is daddy and I. Toys and special snacks don't do it. But let just about anyone take Landon and put him across the room from us and he will get to us just on those two feet. His eyes are often watery and his hands a big shaky in desperation to reach us, but he gets there. However, today was a nice surprise... we were at his aunt and uncle's house and continued to encourage him to walk from one person to another and he did. But at one point, he was sitting on my lap, stood up and walked away towards the kitchen. I.AM.SO.PROUD of him!

More good news- we went to see Landon's pediatrician for a weight check and flu shot this week. First of all, he was being sooo crabby. He was mad at me because I would not stand up and walk around the room holding him. But, as soon as Brooke, his pediatrician walked in, he was full of smiles and charm. Stinker! He has grown quite fond of her. I get a kick out of it! He did much better with his flu shot than mommy did. After I got mine, I complained for two days that my arm was sore. He was not at all phased by it. He cried when he got it, but that was the end of that. Thank goodness he's braver than I am! I was ready to load him up on Tylenol to stop him from experiencing the agony that I went through (haha- I told you he's braver than me). I didn't even have to give him anything. And, best yet, he weighed a whopping 18lbs, 6oz!! Wahhooo!! He gained 9oz in one month and was even getting less of his feed because of a cold that was making him vomit. Plus, he was vomiting off and on. Way to go, Landon!

Last but certainly not least, the Cystinosis Magazine is now available. There is article that I wrote about Landon included in the magazine. I got a bunch of copies to give out, but if you'd like to request a copy- they are free. You can e-mail Nancy Stack at nstack@cystinosisresearch.org. Nancy has been a huge support to us since Landon's diagnosis. Her beautiful daughter Natalie was diagnosed with Cystinosis as a baby. She is now in college and has been incredibly successful. Nancy and her husband founded he Cystinosis Research Foundation which is the group that we have been working to raise money for. 100% of the money that goes to the Foundation goes towards research. They have just offered grants to several researchers. It's all very exciting!! Not only is Landon's story featured in there, but there are amazing stories about other people and families affected by this disease and some great information about the disease and the research going on right now. It offers so much hope!

Oh, and one more thing- the article in the Post Gazette will be out on Nov 28th. Make sure to grab your copy of the PG or check it out online at www.postgazette.com. I assume that it will be printed online too. A journalist did a phone interview with me and with Landon's nephrologist. I am very excited to read the article. A photographer also came to our house to take pictures. Landon maintained a poker face the entire time- well until the photographer was walking out the door. He said "buh buh" (buh bye) and blew a kiss.