Merry Christmas!!

Max and my first Christmas was wonderful. My parents are visiting, and all are enjoying each other tremendously. Max is getting rightfully spoiled, especially in the fact that his birthday is only a few days after Christmas. January is going to feel very boring to him. :)

Happy Thanksgiving, and beyond...

Over Thanksgivingm Max and I joined a few other friends in Twisp, WA where we rented a big house, and spent time playing games, reading, hiking, visiting the horses, and basically just hanging out. It was absolutely lovely. Max needed to get used to sharing his momma with other people, but other than that, he connected well with everyone and had a good time. It was so nice to get away for a few days, and basically just think about the next meal. :)

An update from the palate surgery: unfortunately, the hole in his palate came back. This basically means that we have to do the whole thing over again sometime next year. Besides that being a bummer, the second time you try anything like that, it only has a 50% chance of working because of all the pre-existing scar tissue. We'll see what our options are when we meet with the surgeon again in January.

In the meantime, we're heavily getting ready for the holiday season. We put up our lights today and getting ready for Max's grandparents to join us Dec. 21. Very exciting, and we're all looking forward to it.

Halloween is almost here!

We went to a local pumkin crawl, and got to try out Max's costume for the first time. He is a panda bear this year, although people kept thinking he is a cow... hhhmmmmm.... He doesn't like the hat much, so it's lucky that I got at least one photo. Let's see what happens next weekend.

The Pumpkin Patch

It's been two weeks since Max's surgery, and it's taken him some time to get back to his old self. For the past week, Max has been running a fever, so that's been a bummer for him. We went back to the dr, and they think it's not connected with this surgery, but rather a virus independent from his operation. But for the last two days, he's been fever free and acting quite normal again. Phew!!

Some pictures from the hospital

Before the operation. We had to wait a while as the surgery before us took longer.

The last time he can suck his fingers for a while...

After the operation - poor little dude....

Napping in the hospital. I don't even know what day this was. They all started to blend...

Hugging his new favorite stuffed animal, Papa New Guinea.

Recovering

It's funny to read the last post because we didn't end up leaving the hospital until Fri morning. 3 catheters later, Max finally was able to get his system working again and the drs finally felt fine about releasing us. I am so glad to have the hospital behind us. Even though it's a great place for when your child is sick, it's never fun to have to spend an extended time there.

Max, Carolyn and I had a good weekend. We took lots of walks, ran some errands, and basically took it easy. We did manage to go to a pumpkin patch, which was a lot of fun. Max did great, and continues to love little adventures. We managed his pain through ibuprofen and Tylenol, and he was content and mellow most of the time. Last night, he did have a fever, but he was fever free today, and even had some of his mischievous side back tonight. Let's see how tonight goes.

Carolyn left early this morning, and once again, I don't know what I would have done without her. She made sure to free up everything I had to worry about, so that 100% of my energy could go toward Max. "Hey Car, do you know where my wallet is?" "Why, yes, Jess, it's ..." "Hey Car, did you pack the ...?" "Yes, Jess, I got it!!" She was amazing, and words cannot express how thankful I am to have had her here for so long! Now, it's onward with recovery.

Still in hospital

Max is still doing great, but we're waiting for him to pee on his own before we can go. We spent a second night in the hospital, which was a lot calmer than the first one. He doesn't seem to be in that much pain and we're trying to stay ahead of it. The drs think we should be able to go home by this afternoon. In the meantime, we're singing all sorts of water songs, running the faucet in the bathroom... anything!! :)

Wednesday morning

Max had an o.k. night. He came out of recovery about 9:00 PM, and started crying as soon as he saw me. Poor little buddy.... He settled down, but around 10:30 the regular Oxycontin and Tylenol combo wasn't doing the trick anymore, so we put him on a morphine drip. He was in and out all night. Thankfully, Carolyn stayed in the hospital with us, and that made all the difference. We also had a hospital bed, not a crib this time, which allowed me to lie right next to him. He eventually ended up on top of me, and took little cat naps.

Now it's around 9:30 and he's sleeping again. He doesn't look as swollen as he did after his first surgery, but all of the swelling is on the inside of his mouth this time. We are hoping not to have to spend another night in the hospital and to go home later this afternoon. We'll see, but so far, so good.

Surgery!

Despite doubting that Max would actually get to have this surgery today because he's had a cold, he was healthy enough to proceed. He is being worked on as I type this, with a possible end time in about 3 hours.

I picked up Carolyn from the airport last night - SO great to see her. Because Max wasn't supposed to eat anything after 5AM this morning, I woke him up at 4 and we ate a little waffle, drank some juice, etc. Then we went back to bed. He slept until about 8:00, which was so great! Then we putzed around at home (he took another nap at 10:30), and we were off to the hospital at 11:15.

When we got here, we checked into the surgical unit, where we met with his team, including the anesthesiologist, who cleared him for surgery. Everyone is so nice here and super helpful.

We just got a page from the Ear Nose and Throat Surgeon who put ear tubes into Max's ears. Everything went fine - he had a lot of fluid in his ears, she said so he should be able to hear better now. Hmmmm.... didn't think he wasn't hearing well. :)

So now we are waiting for a progress report from Dr. Birkfeld. He said his part should take about 3 hours, so, in addition to an MRI he's getting, Max should be in recovery by about 7:00.

We are spending one, maybe two nights in the hospital, depending on how fast Max can eat food. We'll see.

Pre-Op Appointment

Max and I went to the hospital for his pre-operation appointment. If all goes well, and Max can stay healthy, he'll have his second surgery on Tuesday 10/13. The last one was mostly an exterior soft tissue fix. This one will be inside his mouth, and will patch up his soft palate. The surgeon will use tissue from his mouth and sew up his hole that extends from just where the bone/cartilage ends, down beyond his uvula. That area is called the soft palate, and is necessary for his speech development.

Max will also get some eartubes put in, since cleft palate patients are prone to ear infections.

Unlike the first surgery, this one will not be as rewarding visually. It was amazing how Max's face changed after he had his lip fixed. We won't be able to tell much at all with this one, and on top of everything, this surgery will be much more painful and invasive for him. We might stay in the hospital for two nights this time, depending on how well he can drink and eat food - that will be his ticket home.

I am planning to take at least a week off from work, and more if I have to. Max's Fairy Godmother, Carolyn, is also flying in for the occasion, and of course we are already surrounded by an incredible support team. In fact, Jemae, Vanessa and Heidi all took turns and came to the pre-op appointment with Max and me in shifts. It was incredibly helpful to have them take care of Max while I got to talk with the doctors.

So hopefully Max can stay healthy and we'll still be able to go ahead with it. (I kind of want to get it over with.) I'll use the blog to keep people updated on our progress.

Thanks for keeping us in your thoughts.

Hugs!

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. :)