Has it Been That Long?

Wow! I can't believe it's been nearly a month since our last update post. Sorry for the neglect. Mason's been cooking right along with some ups, some downs, continued teething (he hasn't had a break from cutting new teeth since Feb/March) and basically, just holding steady.

Steroids:
We've been able to cut Mason's steroid dose in half so that he's just getting 0.5 mL once a day. He seems to be tolerating it well with just a slight bump in his oxygen need, but we think we're going to give him another week to adjust before bringing his dose down any more. It's amazing how much 0.1 mL affects his system. Even that small of a jump can cause some pretty big changes with his oxygen need, so we have to take it very slowly. Once we get to 0.3 mL once a day, we'll go back to see the Endocrinologist (hormone doctor) to start our 6 month process of getting Mason off of steroids completely. Once that happens, hopefully he'll start to grow more in height which is essential for his lung growth.

Lungs:
We saw the pulmonologist (lung doctor) last week. He was was pleased to see that Mason's coming down off of the steroids a little bit, but slightly concerned that his carbon dioxide blood values were high. The labs seem to be the same as when he was in the hospital the last time (in May), so at least Mason's holding steady. In the doctor's words: not good steady, more like bad steady, but at least its steady. We're not sure why the bump in the amount of carbon dioxide his body is holding in, especially since he appears to be doing well otherwise. Guess we'll just have to keep an eye on those labs and see if it's just a blip in time. We asked about doing another chest x-ray to see if Mason's lungs were developing, but once again the answer was it really isn't necessary. If it shows the lungs are developing, we are on the right track. If it shows they are getting worse, they wouldn't really do anything different. All we can do at this point is keep doing what we're doing and let nature take its course with Mason's growth. It's really a lot of hurry up and wait.

Development:
This is the area where we've seen the most improvement over the last couple of months. In June, Mason was just starting to get from lying down up to a sitting position. Now, he's transitioning between the 2 positions with ease and in different ways (not always the cute butt up in the air method). Last month, he started pulling himself up to standing in the crib, and now he's able to do it on the couch as well. He's quite active with cruising around holding on to furniture. At times, he even reaches out for our hands to go for a little walk. Truth be told, I think he actually prefers to be standing more than sitting around - where'd 2 lazy people like us get this kid?? We've found we have to turn the oxygen saturation monitor off any time he's on his feet or it doesn't read right and sets off the alarm with any pressure - quite annoying, really.

Today, we went in to the clinic for a PT appointment. It was the first time in 4 months that this PT has seen Mason and she was amazed at how much he's progressed in that time. He even tried to crawl up some steps that she has. Unfortunately, since he's really short for his age and development, he couldn't quite get his knee up on the step. The PT was pleased that Mason is doing everything he's supposed to and she only had one minor concern. It appears that his left ankle isn't quite as strong as she'd like it to be, so we're going to see about getting him used to wearing shoes to see if that gives him a little extra support. My little guy is growing up - time to start wearing something other than just socks on his feet.

I think that just about brings us up to speed. Oh, one other thing. At the lung doctor appointment, we got another weight for Mason. He's finally enough over 20# (21 lb. 4 oz) that we finally have turned his car seat around in the car. I really enjoy having him forward facing. It's fun to reach into the back to tickle his feet while we're stopped at red lights......