I am truly embarrassed that I haven't updated the blog for over a month. Believe me, it's not because nothing has happened. As you can imagine, we've been quite busy.Max and I have been together now for 5 months. I have to keep reminding myself of that fact every few days as it seems like he's been with me forever. Our routines are so well established and life just seems "normal". I often have to pinch myself that all is going so well, and I try to appreciate every day, since tougher times could be upon us any time. Not that I'm waiting, but it is reality.
He is now 18 months old, and is just thriving. He is more vocal, although he's not speaking any words yet. We have begun using some sign language, and it's been great to use that as the very basic level of communicating. He knows "more", "gentle", "books", "bath", "water", and other ones as well. And then there's always the opportunity to make up his own ones. :) And yes, just like any toddler, he has a will of his own, and when things don't go his way, he'll let you know about it. We are currently working on not hitting Momma when she has to take something away. What's a sign for "time out"?
Medically, he still has his nose tubes in, and they'll probably stay in for another month or so. The surgeon wants to keep them in as long as possible, and since they're not bothering him, it makes sense. His scar is going through its "ugly" stage by being more red and puffy, but that's normal. We have to massage it every night (ask Max how he feels about that!!), and we TRY to put the silicone patch on as well, but that's been more difficult lately.His next surgery will most likely be in October. This surgery will take care of the inside palate, and the surgeon said he has quite the challenge ahead of him as the openings are unfortunately very big. Whereas the result of the first surgery was more satisfying, the palate surgery will actually be more invasive and painful for him. I'm dreading it, but we'll get through it just fine.
Max has also begun to see an occupational therapist, who is guiding me through helping Max develop his eating skills. He is still mostly drinking all of his food. Pediasure is his favorite, with a yogurt smoothie a close second. But this boy also likes flavor, so making more flavorful soft food is a goal for this month. I'll take any suggestions you might have... :)Our first session with the O.T. focused on having Max eat crackers that easily dissolve in his mouth. He currently bites off little pieces, plays with the cracker in his mouth, and then spits it back out. Sometimes he gags, which, despite my accelerated heart beat, is actually a good thing for Max to trust, as he's learning what his body can do to help him process the food. The goal is to desensitize his mouth a little and get him to accept solid foods. We'll see the OT every two-three weeks.
On the fun side, Max and I have taken a road trip to Montana, have ridden our bike together, have gone to concerts, and are basically excited for a great summer. My work hours are a lot shorter than during the school year, so that allows me to pick him up from day care, and then go do something fun before his 7:30-8:00 bedtime.
I promise to do another update soon. :)
