You are reading the words of one tired mama! We had such a busy, and very enjoyable, weekend. I had some more girl time at a very good friend's bridal shower on Saturday and then we had a 50th birthday party for another great lady in the evening! So much fun, and Landon had a great time at the birthday party. There was a gentleman who played the bag pipes and Landon listened in awe. He clapped randomly through the few minute performance. Very cute! And today, we went to Landon's first Pirate game. He looked so cute in his Pirates shirt and hat. He clapped and yelled (particularly loud during the National Anthem, sorry to say!). He was very cute though and entertained the people around us. I have to add that we were seated in the Lexus Club, right behind home plate, and definitely enjoyed the seats (thanks to Jason, Jaclyn, Jason and Jamie). We had a DELICIOUS lunch before the game and great seats with first class service!

On a less fun note, Landon has been having some issues with bodily functions. I guess I can put it that way. Hey- you want updates, right?! He has not been having healthy bowel movements(bm's) for quite some time, and particularly since starting his meds in the hospital, he has experienced lots of diarrhea. It improved a bit once his meds were tweaked a few weeks ago, but seems to be not so good again. It's not as often and as much, but it still happens every few days and that's all we get as far as bm's- not good! And now, he has started vomitting a bit. It definitely is not like it was before he was hospitalized. He used to vomit his entire feeding. That's not the case, usually, but it is still enough that it is concerning. I, at first, was afraid that his G tube moved out of place (vomitting and spitting up is one indicator that it has), but it does make sense that what he is taking in has to come out and definitely isn't coming out in the other direction. I spoke with the nephrology fellow on call over the weekend and he agreed that it makes sense that it is the medicine but that he would rather wait until Monday when the doctor who knows Landon well will be available to make the decision about his meds. So, we will see what Monday brings... Another interesting observation that I have made is that Landon seems to be producing more urine lately. We change him pretty often during the day so I don't notice it, but at night, he is definitely soaking through diapers. I began putting him in a larger size diaper at night (size 4) at the recommendation from my expert mommy friends on Landon's birthday club board. It worked for a couple of weeks, but he has even soaked through those diapers over the pas week. Ahh!! Jimmy laughed at me, but I actually put a size 3 diaper on him last night, with a size 4 on top of that. His jammie bottoms still fit over it, and his pants and sheets weren't soaked when he woke up this morning. Hopefully this continues to work. If anyone has any other suggestions, please let me know!

As for appointments this week, he has an evaluation with Physical Therapy tomorrow and a weight check on Wedensday. I scheduled PT to be proactive. I don't think he is necessarily behind yet but I want to make sure we stay ahead of the game. He is not walking yet, but I don't think anyone would be concerned yet even if he were not diagnosed with Cystinosis (and Rickets). He cruises along furniture, pulls himself up and stands holding onto furniture (or people... or Rocky...), and walks while holding onto our hands.

We planned to skip his weight check this week but he didn't gain at all last week so I didn't want to not go this week. Hopefully he has gained since we were last there. He was 16lbs, 10oz last Wednesday.

I will update more later this week! Thank you for taking the time to check in!