Chatter Box

Okay friends... confess! Who is Landon spending so much time on the telephone talking to? You could not believe the conversations that this child has with his "friend." He used to pick up the phone and say "hewwo" but now it also involves a lengthy session in a language that only he understands. He has become so vocal over the past couple of weeks but particularly over the past few days. He now says "Mum Mum" in a way that I can only describe as an old man with no teeth saying "MumMumMumMum." He is also beginning to imitate and repeat a lot! He has also said "car" and I swear to you he said, "Daddy home" but I can't be absolutely sure.

He is cruising along the furniture very well and pulls himself up to standing (while holding onto something) and sitting back down with ease. We actually played peek a boo for about 5 minutes straight which involved him hiding behind the couch a popping up upon hearing someone say "where's Landon?" Walking? Not so much. He seems to be initiating walking with assistance (holding our hands) more, but our attempts to get him to push some of his toys that encourage him to hold on and push have been unsuccessful. He cries and wants to sit back down. I still think we have a while before walking but we are waiting patiently. I can only imagine the excitment that we will experience when he takes his first steps independently. It will be such an incredible accomplishment for him! It is for all kiddos, but I think it'll be that much more exciting because it feels we've been waiting so long.

Speaking of accomplishments, I was talking with a new friend of mine who has a beautiful little girl who also has Cystinosis. She mentioned that when her little girl hit 20lbs, they made a big deal out of it, bought a cake and a new outfit. I loved the idea!! Landon was 16lbs, 10oz at his last appointment (after a disappointing weight loss following my experiment with the feeding tube). So, be prepared when he hits 20lbs for lots of pictures and a celebration!!

One last thing I want to mention, he had a nephrology (kidney) appointment on Friday. It went well. His phosphorus level was a bit low but higher than the last appointment. This is very common for people with Cystinosis. They made some changes to his medications but are pleased with how well he is doing. We certainly have some more difficult days with the diarrhea or not pooping at all and vomiting but he really is doing exceptionally well. He tolerates the feeds and the medicine wonderfully! He is gaining weight consistently and guess what- he is actually eating better! We sit him in his high chair and give him food before each feed. He takes at least a couple of bites each time he sits down, sometimes it's only a bite or two and sometimes it is more. It is very reassuring!