It's been a while..

I was reminded last night, at a Thirty-One party that I was doing, that I have not updated this blog in while. I thought it was just over a week but I see now that it's been about two weeks. Time flies and things have definitely moved forward since I last posted!

Landon is walking all over the place now, yay!! Walking was on of the major milestones that we were waiting for. His Physical Therapist asked me this week if he is walking 25% of the time and I was proud to say that it is much more than that. And he is still such a little guy so it's funny to see him toddling around. Another mom in his Mommy and My Pre-school class said "look at his little swagger!" He is still using his arms to help balance so he looks a bit robotic, but nonetheless, he is doing great! He walks all through our house and was walking in the mall the other day while holding my mom's hand. He's becoming a big boy!

The other milestone that we are waiting for is 20lbs! At his last doctor's appointment he was 18lbs, 6oz (I think I mentioned that in the last post). He's getting close!

The stuffy nose and congestion that he experienced over the past few weeks has come in a full circle. We thought he got rid of it but sure enough, the other night I went in because he was crying. His nose was really stuffy and all of a sudden, he vomited all over himself and his bed. I don't even get him out of bed anymore. I change his clothes and change the sheets all while he is laying down. He throws up enough that we now can complete the whole process of cleaning up in well under a minute. Colds aren't fun for anyone, especially little ones, but it gets a little more complicated with Landon because his primary source of calories and nutrition is milk (formula). And you know when you have a cold, you stay away from milk and other dairy products because the mixture of mucous and milk doesn't sit too well in the stomach. And Landon already has some GI issues because of the Cystinosis and the meds that he takes. So, we have to cut back on his milk and experiment with how much milk he can handle and at what rate we can allow it to go into his body. A few parents from the Cystinosis Forum that I am part of take their kids off milk when they get a cold and replace it with Pedialyte. I still feel like Landon takes in enough milk, despite some vomiting, to continue giving the milk to him. If it seems as if he's not tolerating it and is throwing up a lot, then I will certainly eliminate the milk. I struggle with the thought of going backwards in weight gain because it's been so difficult to get him to where he is. And if we don't give him milk for a couple of days, that's what will happen..

Along with the cold, he is teething. Ahhh!! Right?! He has never been a bad teether. He handles it so well and it's not often that I give him Tylenol. I usually only know he's teething because he chews on EVERYTHING. And it's not just "put it in my mouth because I know I am not supposed to" but it's a "gnawing on whatever I can get my hands on" with a desperate look on his face. Well, I guess he is getting his canine teeth (the pointy ones as was described to me). Apparently, these are no fun and they break through in a way that other teeth do not so it's a different experience. He's been fussier although still not too bad, but this morning a few things have added up which made for an early nap time! The cold, teething, and getting up at 6am. He usually sleeps until 7 so 6 isn't such a big deal, but I did let him lay in there until 7 because he alternated between crying, laying down and talking. I knew he was still tired, but I surrendered right before 7 and got him out of bed.

I hope that this post didn't sound too negative. Overall, he is doing so well! And just like any child illness and teething is no fun! It just gets a bit more complicated in Landon's case. But so far, no serious sicknesses, and I pray that it stays that way throughout the winter. Odds are that he will get some kind of nasty virus this winter because a lot of kids do and I'm prepared that it may mean a couple days in the hospital to get fluids and back on track- I'm not counting on it, but am prepared! You can't keep them in a bubble, right?! Although, it is a thought.. =0)

Oh and just an update about the Post Gazette- the paper pushed back the date for publication. Landon's story about his diagnosis of Cystinosis, along with pics and information from his doctor will be in the paper on December 12th. You can view it online at www.postgazette.com.

I also want to mention that Cathy from Cathy's Creations is sending me some Cystinosis Bracelets to sell. The plan was to sell them at the fundraiser in October but we had a miscommunication about the date of the event. But, I love them and asked her to still send them to me. They cost $35 and $5 will be donated to the Cystinosis Research Foundation.

Also, there is a small fundraiser going on in which we are selling cookie dough and candles. Cookie dough is $15 and candles are $10 with the option to add a topper and base for an extra $8. We are going to be wrapping this one up soon so contact me asap if you are interested. There is no cost for shipping and no tax since it is for a fundraiser.

If you are interested in either of these fundraisers, please contact me at LaurenLHartz@gmail.com, through Facebook or by phone if you have my number.

Also, remember if you want a free copy of the Cystinosis Magazine, contact Nancy Stack at nstack@cystinosisresearch.org.