I'm sorry I haven't updated in a little while! The good news is that I haven't because we've been busy and having fun! We got to spend lots of time with family and great friends over the holiday weekend. I am beginning to get more comfortable with being out of the house and doing the bolus feeds. It's not easy and I recheck over and over again to make sure that I pack the right meds, the right syringes, enough formula etc, but it's definitely worth the extra effort because it's nice to be out and feeling normal again!!
Before I say more about Landon, I have to say that I appreciate all of you who keep up with this blog. I'm amazed by the number of people who tell me that they read it regularly! It's so incredible. So, we thank you for caring about Landon and our family so much!!
Now, as for the wild child.. yes, he is wild! And although he wears me out, I enjoy every minute of it! He's our little energizer bunny. The look on Jimmy's face is priceless as he watches him jump all around on our bed or crawl at lightning speed through the house. We actually feel like we have a toddler in our house now. There are books in the kitchen and tupperware bowls in the living room... He picks up our cell phones, puts it to his ear (he actually attempted to hold the phone in between his ear and shoulder the other day) and says "hewwo" with a very serious look on his face. He has his favorite books that he insists that I read over and over again. He, very clearly, understands the word No, and continues to challenge me over and over again all day long. I often have to turn my head to laugh so he doesn't see me. It's not that he wasn't doing a lot of things before he was diagnosed and put on medicine, but everything it's happening so much more and is more exagerrated now. I thought that he was fun before, but now he is such a blast!
I also want to add, because many people have mentioned, that I have been in contact through the internet (facebook, e-mail, community forums) other families and individuals who have Cystinosis. There is such an amazing connection and incredible support. They are so bright, well informed and so passionate. Jimmy isn't involved in Facebook and those kind of things like I am, but he reads the forums and we talk all the time about our new friends. I wouldn't wish this disorder on anyone, but am so thankful that there are awesome people out there who have been there and can be there to listen (read) our vents, answer questions and offer kind words and support. We cannot wait to eventually meet our new friends at the yearly conferences!! I am so inspired by the adults who were diagnosed at a time when they didn't know so much about the disorder and how to treat it. They, along with incredible doctors and researchers, are the reason why Landon won't have to face some of the hardships that were faced by others. I am inspired by the parents who serve as advocates and caretakers for their children and am absolutely inspired by all of the babies, kids and teens who face each day with big bright smiles on their faces despite having to take medicine and not feeling so well... One woman is writing a book about her experience and I can't wait to have the opportunity to purchase it and will definitely post the information about it on here when it's available.
At some point, I promise to upload some pictures and make the page prettier. I'm not so good at all of this yet!!!
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