Some fun pictures

Upcoming Surgery #2

Max will get his palate fixed on Oct. 13. Below is a link to an interiew about Max's surgeon, Craig Bergfeld. I feel so fortunate to be at Children's and the craniofacial team - they are a great group.

http://craniofacial.seattlechildrens.org/about/stories/qa_birgfeld.asp

Back to reality

Now that it's Labor Day weekend, it means it's back to reality. School starts on Tuesday, it beginning to rain, and all in all, it's feeling like Fall outside. But looking back, Max and I have had an amazing summer.

On a sad note, we had to say good-bye to Nona the Wonderhound. She'd been with me since was a puppy, and had a great life. She was 13, and was my constant companion. I will miss her so much!!

Max has discovered solid food, and is eating eating eating. He basically likes anything that feels good in his mouth, so now I am busy preparing different things for him, running it through the food processor, and freezing it in ice cube trays. It's been very fun.

He is twenty months now, and acting like it as well. He is mischievous, pushes boundaries, but comes back for a hug when he needs one. He's even helping to clean up. Let's see how long that lasts!! :)

What a great summer!

We're having a wonderful summer. It's so fun to see the city through the eyes of a one year old - wading pools, street fairs, bike rides, and other adventures have been so great! We've also been lucky enough to take some trips, like sailing with some friends:

and going to Panama to visit Carolyn and her family. Max is a well-traveled boy!

It's July Already - How Did THAT Happen??

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. :)

Memorial Day Weekend

Max and I enjoyed our first Memorial Day weekend. It was truly nice to be able to take a deep breath and not have to rush off in the morning. We enjoyed a music festival, we did some house projects, we saw some friends, and we went sailing for the first time with our friends Brent, Heidi and Griffin. Nothing like a one and three year old on a boat together. Entertaining for sure!!

It's also been a month since his first surgery, and he is just healing so well. His scar is visible if you know what to look for, and he is still wearing his nose stints, which we'll try to keep in there as long as possible to have his cartilage reshape. We clean his nose with saline solution, and also put a small silicone strip on his scar to help with the healing process. These are little events he does NOT enjoy (I'm sure it's really sensitive), but we get through them o.k.

Of course there are little memories made every day, and I wish I had time to write them all down. Here are some fun ones to remember: Max has been starting to drink out of a glass. No sippy cup - he's going for the ultimate test right away. That's been very fun to watch. Also, the last part of our bedtime routine involves me singing him some songs while he's lying in his crib. Now usually, he would start to cry when I would leave. Now, however, he waves good-bye before the second song is over, almost like "yeah, o.k., I know this one already. You can leave now, Momma!" He has discovered the volume control on my clock radio, and loves to turn it up full force... at 6:00 A.M. Then, when a song is playing, he starts to dance, swinging his hips back and forth, and looks back at me as if to say "Oh yeah, check out these moves..." And lastly, his transitions at morning drop off have lost the red-face crying episode. Now we enter the room, sit for a little bit together, saying hi to some of the kids, I say goodbye, and he reaches for his teacher, Cathy, without tears. When I pick him up, however, it's still the same laughing fest as before. I hope we never loose that!!

Mother's Day... and Beyond

Mother's Day marked the end of the honeymoon - our three month maternity leave. We had a great day at a beautiful beach off the Kitsap Penninsula, where Max and I, along with our friend Mary, took a long walk among the tide pools of this huge beach. It was truly lovely, and a great way to end this chunk of time together, besides the fact that it was my first Mother's Day. Sniff...

On then with the reality of our lives. Max is part of a day care just up the street from us. Besides a traumatic drop-off, he has a great day with lots of explorations and connecting with other one-year-olds. When I pick him up in the afternoon, he is, as they say in my family, completely cooked! Now that the days are getting a little longer, we are able to enjoy some time outside, taking Nona on walks, or, if I'm feeling really ambitious, going running. In any case, bed time is around 7:45, and he is ready!

His mouth looks great! We had out two-week post operation check-up on Monday, and were told that his scar is healing great. However, it will start to look worse than it does right now as it's continuing to heal. The surgeon gave us some silicone patches that Max is supposed to wear as much as possible. We try, but with Mr. Droole, it's very difficult to make anything stick to his mouth. Of course, that whole area, along with the nose stints, continues to be very sensitive; he does not like it one bit when I touch his scar. Can't blame him!

So our next step is to continue paying attention to how the scar heals. Then, in about 4-6 months from now, we're due for surgery #2, which will deal with the inside of his mouth, and closing the big gap he has in his palate. More on that later, I'm sure!