Landon is doing great, here at home, and I love being a SAHM! It feels like I should be working on progress notes or calling clients, but the meds and feedings are certainly keeping me busy enough! Which, by the way, is all going well except for intermittent oopsies. Our little man is finally get hungry which is different for us. Last night, something happened with the feeding tube and from 8:30pm until 11:30pm, he got nothing and we had no idea. I walked in to a screaming baby (screaming as if he was in severe pain!) and couldn't figure out what was wrong. I noticed that half of his formula was in the farrell vent (bag for venting) and the other was in the feeding bag. Ahhh...  Nothing we did consoled him until Jimmy gave him a sippy cup with some formula (ta da!!). It did the trick and he went back to sleep. Jimmy are pretty amazed at what we, with no medical background, are trusted to do! His meds are pretty complicated (it feels like it at least!) and between those and the feedings and using the tube (oh my!). I am getting more comfortable with it, but still.. Most of the time, however, he is his silly self! He is amused when he is connected to the feeding tube, during the day, and I follow him around with the stand. He crawls quickly and laughs as if I am chasing him! My plan to entertain him with Elmo or books (so that he is not mobile) has not really worked! It's okay though.. I don't mind chasing him around with the stand as long as it makes him smile!

One of my least favorite, of all of this, is the diaper rash! My poor baby never had diaper rash but now has very loose stools so his bum seems like it is always red! No sooner do we clear it up, I change his diaper and there it goes again. Ahh.. poor baby! I hope this ends soon!

I got a call from the geneticist that we met in the hospital. She's a great lady who is Lebanese, from Beruit, and has a great accent! I am part Lebanese for those who did not know.. very small part, but I love it! Anyway, the first test they did to discover where the mutation lies indicated that deletion (which from what I read, is the most common mutation) was not present. From what I gather, from reading, there are over 80 different mutations that can cause cystinosis. The most common (approximately 50%) being from deletion which means that a large part of the CTNS gene (sometimes referred to as the 57-kb deletion) is deleted, resulting in the complete loss of cystinosin. This is not the case for Landon so now they are looking into other mutations and we should know the results within the next 2 months when we go to our first appointment with the geneticist. We will get a lot of information about the disease and what the mutation means at his appointment. I wish I had more knowledge about genetics but it seems so complicated! I hope that I am understanding all of this because otherwise, this last paragraph was just some things that I made up! I apologize if that's the case and promise to give you information as it becomes available. So, we still do not know if Jimmy and I are both carriers or if one of us is a carrier and something crazy happened in utero (don't you love the use of my scientific terminology?!). They will offer to have us go through genetic testing and I really hope to do that, but I don't know how expensive it will be and if insurance covers it. **Fingers crossed!** I have to say that it kind of sounded like they saw something on one side and not the other but it may be a result of my misinterpretation and wishful thinking! And she certainly did not say that it's probable that only one of us is a carrier. Actually it is pretty rare to only have one carrier. But, Cystinosis is also very rare so who knows???

I hope you got something out of this post (anything?!) and it wasn't just rambling! =0)