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!

Great recovery

It's amazing to think that we have been home less than a week. Max is doing so great. His lip is healing very fast. The outside of his lip (under his nose) is actually held together by glue, and it's slowly dissolving, along with the stitches underneath it. His face isn't as swollen any more. His nose stints are staying open, thanks to some frequent squirts of saline (he doesn't like that at all!!). But best of all, he isn't touching his face at all, so he doesn't need to wear the Frankenstein arm braces as much as I had thought. He mostly wears them at night, when he's bound to suck on his fingers, but during the day, he's free. That has definitely made the recovery more pleasant.

Here are some pictures I took a few days ago. He looks even today. :)

First Surgery... check!

Max had his first of three surgeries on Tuesday. They basically fixed the outside of his face, connecting the lips, and shaping his nostrils with nose stints. Here is the play-by-play!

We arrived at the hospital at 12:30, had a series of appointments with the surgeon, the anesthesiologist, and nurses, all of which were helpful and informative. At 1:45, they took Max, which was really hard! And then came the three hour wait.

My friend Jemae was with me, and hooked me up with some of my favorites: a Symphony bar, Odwala protein juice, coca cola gummy bears, and an Outside Magazine. I was set. The hospital gave me a beeper while we waited, and when it went off to let me know there was an update from the nurse, I jumped!

I got to be with Max in the Recovery room. He was just waking up when I walked in, and he tried to smile! Melted my heart away, I tell ya! Then we went up to our room, which we shared with another family whose 3-month old baby had just had her lip repaired as well. Hans joined us later with some food, and both Jemae and he were able to stay until about 9:30. Such good friends!!

Then the night began. As expected, it was a little rough, not only because Max was cranky, but mostly because he was hooked up to all these tubes and machines, whose cables kept getting tangled when I held him. And when they didn't pick up the right information, the alarms would go off, and the nurse would have to come in and fix things. I lost track of how many times that happened that night. Max is also wearing these velcro sleeves that are preventing him from touching his face. He'll have to wear these for the next two weeks.

But around 5:00, he turned a corner, and was more alert, and happier, even taking his bottle. By 8:00, I took him on a walk in a hospital stroller (no more machines!!); truthfully, I need a cup of coffee! At 9:30, we were seen by the nurse practicioner, who told us we could go anytime I felt comfortable. Great, except that Max decided to take a really long nap (which he so deserved), so we didn't leave until 2:30.


Once home, Max was back to his usual business, although a little more subdued. He slept great last night, only waking up twice for food and more meds. Today was also a great day, although his face is more swollen today (something the doctors warned us about). He is still on several different pain killers, mostly Oxycodone, baby Tylenol and Motrin. I'll continue these until the weekend, and then see how his pain is doing.

Thanks for all your warm wishes and thoughts. He is truly a trooper!!

Watching TV on Saturday Night....

I kid you not, just a day after I found out Max's surgery will be on Tuesday, there was a infomercial/fund raising show about cleft lips and palates. This particular show was put on by Operation Smile, but many of us have heard of additional organizations, such as the Smile Train. Both organizations are amazing, in that their doctors voluntarily go to third world countries and perform cleft lip and palate surgeries on thousands of needy children.

There I was, crying like a baby. Of course I'm nervous about Tuesday, but I was also struck how lucky Max and I are to live in this environment where such surgeries are almost a given. Many of the children I saw in this video suffered tremendous social ostracism and traveled hundreds of miles to be chosen for this surgery. I'm sure you can imagine the difference these surgeries make in these children's lives. It's truly fantastic.

So, as you're thinking about Max on Tuesday for his first surgery, I'm asking you to also think about these children who have it much harder than Max, and who depend on these volunteer organizations to change their lives. I hope you'll join me and make a donation (of any size!!) to one (or both) of these organizations. Max's fellow cleft lip/palate pals will thank you for not letting this facial deformity interfere with the opportunity to have a normal life.

Here they are again:
Operation Smile
Smile Train

The First Surgery

Max's surgery has been moved up to this coming Tuesday. There was a cancellation in the surgeon's schedule, so they called to see if we were interested. At first it was quite a shock to even think about it being so soon (his original date was June 23), but the more I thought about it, the more it made sense. It works out perfectly with my two weeks that are left in my maternity leave, and getting it done sooner rather than later also made sense. So here we go!

We'll have several pre-op appointments on Monday where we'll meet with the nurses, the surgeon and other hospital people, and then we're on for Tuesday at 2:00. Max and I will spend the night in the hospital, and will be home on Wednesday. My friends Heidi and Jemae are fabulous and will come with us to parts of our hospital experience. Phew! Plus, we are surrounded by people who want to help, which feels absolutely wonderful.

So, send us good thoughts, and I'll post more info when I get it. :)