First things first, Cutler is still doing great.  We had our biweekly appointment this past Tuesday and everything continues to look great.  We are now down to just one medicine, which is given only on Mondays and Tuesdays so for the rest of the week things are getting pretty normal.  Still having to give pediasure via the feeding tube, but we are down to only three times a day to see if his eating can sustain his weight.  Speaking of, he is now up to a whopping 23 lbs, which is more than some 2 year olds that I know.  I guess that is just further proof that he is my son. 

As for his eating, he is still eating a lot of baby food but occasionally will surprise us by eating some new things.  Today he decided that he wanted a bite of my turkey and salami sandwich and after the first bite decided that he wanted more.  Mason was more than happy to share his sandwich with him as well and by the end of lunch he probably ate close to a quarter of a sandwich.  Tonight, at dinner, he decided that he likes blueberries, grapes, and cherries.  Still isn’t too interested in Strawberries, which is a bit shocking since he likes sweet things.  And the biggest news from our dinner, is that he actually drank 6 oz of a yogurt drink through a straw.  He has started to drink a bit from a water bottle with a pop top, but tonight was so exciting to see how much he drank.  I would imagine that if he keeps doing this with more frequency we can get the tube taken out.

While having the tube taken out is a big thing for us, I think it is just more of a mental victory than anything else, as having it isn’t really hampering anything for us.  He is still able to take a bath and is even starting to swim in the pool now with us.  He really enjoys splashing around, sticking his face in the water, and loves being splashed by his big brother when he performs his high flying canon balls.  Just a week ago Mason wasn’t showing much interest in actually swimming, although he can, instead he just wanted to kick around on his boogie board.  After challenging his ego a bit while at a friend’s house, he has quickly ditched the boogie board and is determined to become a world class swimmer before Cutler does.  Finally, I may have found a good use for sibling rivalry. 

Finally in one of my last updates I sent out a good luck to Ginger on running the San Diego marathon.  If you remember, she was running in honor of Cutler and successfully raised $6000 to help fight Leukemia.  I mentioned that we weren’t able to make it, but that was just to help throw Ginger off our tracks.  Melanie and Cutler flew to San Diego last Saturday and surprised Ginger and then Ginger was able to carry Cutler across the finish line with her!  I still can’t thank Ginger enough for what she has done in helping the fight against Leukemia and doing it in honor of Cutler.  As a bonus, Cutler got to have dinner with his Aunt Emily who happens to live out there so it was a fun filled two day trip for Melanie and Cutler.  By the way, he did great on the plane both ways, aside from giving Melanie a black eye.  Below are a few pictures from the trip and be on the lookout for a few more random posts that will be more pictures than anything else.

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Soo…when Aaron told you I’d be giving you a “weekly” update, I apparently forgot that a week consisted of 7 days.  I would really love to tell you that I’m not this great a procrastinator in other areas of life, but that would just be untrue.  People can change habits at some point, right??

 Anyways, Cutler continues to amaze me with progress all the time.  He had been trying to sit up on his own for awhile, but decided to leave the main event for after Melanie had put him down for the night…she wanted him to go to sleep, he wanted to sit up and play in bed.  With this strengthening of his core muscles, his balance is improving greatly.  There are moments when he can stand on his own (one time I would guess was about 20 seconds), and has even taken a couple of steps without any assistance.  He’s still wobbly, but this will greatly help his confidence.  Taking development psychology classes in college, you read about the stages and the instincts that come with being a child.  As a single girl with no kids, I read my textbooks and thought to myself, “I can totally picture that.”  But it’s quite another thing to watch it firsthand.  It is crazy to see the recognition in a child’s eyes when he realizes that, if he doesn’t want to be laying down anymore, he can rectify the situation on his own by sitting up.  Seeing is believing; I might have done well in class, but it takes actually seeing these developmental accomplishments to believe that we are all programmed to learn and progress without really trying.

 On the eating front, we are sticking mainly to baby foods.  These Cutler takes and swallows without problems, so we’ll alternate between solid foods and purees so that the chipmunk cheeks are empty.  After his swallow study told us that he can swallow just fine (as we all knew, but it was nice not to have a problem appear out of the blue), we’ll visit the speech therapist next week.  He has also taken a slight interest in drinking his Pediasure, so that’s a step in the right direction!  He’s also eating more in quantity-whereas a 4 ounce container of yogurt used to be pushing the limit, he can now polish off the Yo Baby, and continue to eat another couple of ounces.

 Cutler also is quite the conversationalist.  He is saying “Dada” on command, so I don’t have to worry about losing my job if “Kobi” is now uttered.  He is quick to point out the things he thinks are interesting, but it takes some interpretation and finger following to figure out what exactly those things are.

 On a closing note, since the anti-rejection medication has been cut out all together, the dark peach fuzz is disappearing.  The forehead swirl and muttonchops are starting to become a mere memory.  Hopefully the back hair will soon follow…

Tomorrow morning the San Diego Rock n Roll Marathon kicks off and our friend Ginger will be running in honor of Cutler.  We really wish we could be there to help support her as she has done so much raising money to help fight leukemia. 

Good luck Ginger!

It’s been an extremely hectic week/weekend and so please pardon the lack of words and bullet format…

1. Cutler’s bone marrow is now up to 93% donor and growing
2. Cutler is now sitting up in bed on his own and is really starting to chatter and laugh
3. Cutler went for his first swim in the pool and loved it
4. Cutler continues to find joy in just about every experience throughout the day
5. He’s especially enjoying bath time with his big brother…he’s especially enjoying any time with his big brother
6. Mason is proving to be the greatest big brother around
7. The family had a great week with Grandma, Papa, and Aunt Pat in town last week and more importantly got to deliver a birthday gift to my sainted mother in person for the first time in a very long time
8. Spent a great weekend with friends in Austin where Cutler and Mason got to spend some fun times with the Doyle and Oliver kids
9. Mom had her back surgery today and is now comfortably numb due to a ton of pain meds
10. Her surgery went well and will start getting her on her feet first thing in the morning

Hopefully things will start to calm down by the weekend and I can start to post some of the many photos we have gathered over the past week.

Today was Cutler’s doctor appointment and everything went great.  Blood work still continues to look good and Cutler is continuing to gain weight.  He is now over 22 lbs, so the doctors are still very pleased with his progress.  We have cut back on the GVHD meds once again to only once a day now and then next week we are going to see how he does without it at all.  Very excited to get him off his last couple of meds. 

Cutler is continuing to eat, but right now he is limiting himself to sweet baby foods, yogurt, guacamole, and hot dogs.  He will occasionally try other items and is making some progress on swallowing.  Still not drinking a lot, unfortunately, but we do have an appointment with the speech therapist on Thursday. 

Other than his lack of desire to drink, everything is going wonderfully.  We continue to be a pretty busy family running from here to there and then back to here, but I love every minute of it.  This past Saturday we had to divide the team where Melanie took him to the Cure Cancer walk at the Texas Motor Speedway, where I hear he got plenty of love from the nurses.  Below is a slideshow of some of the pictures Melanie took, including his buddy Lucas.

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Ok, it is still a lot of babbling more than talking, but despite Kobi’s best efforts the first real words out of Cutler’s mouth is…

And here is one where doesn’t say dada, but appears to have a lot to talk about…I love to just sit and watch him play.

Aside from Cutler’s continued improvement, Mason has shown some drastic improvement of his own…in ice skating.  Because of his desire to play hockey, not for ice dancing, we enrolled him in ice skating lessons.  Today we received the recommendation for his next class level and we learned that he is able to skip to advanced ice tots.  He skipped ice tots 2, leaving him with only one more class before he can get into hockey skating lessons. 

You may remember this video of his first skating endeavor after he gave blood to see if he was a match for Cutler…

And this is a video of him skating from last week…

Please excuse the layout on the first video…consider it my before and after on learning that you have to take landscape videos on the iphone.  🙂  I wish I could have taken a video from tonight’s skating as his confidence is through the roof.  We went around twice without me holding his hand at all.

First things first, we just got more bone marrow results from Cutler’s last blood test and he is now up to 93%!  So very excited to see the numbers continue to increase this way.

Cutler has also proven another amazing talent.  He has an uncanny way with animals.  First it was Tau that we noticed would listen to anything he said to do using his baby talk.  Then it was some of the birds he was causing to fly consistently into our glass doors and windows.  Now he has managed to get a lion cub to lead him around the house without our help.  Truly amazing child we have…

Just like the temperature in a Texas summer, Cutler’s percentage of donor marrow is on it’s way up!  The picture from above is the latest percentage based on his last bone marrow aspirate.  I can’t tell you relieved I am to see this going up significantly.  The last we reported, it was at 73 I believe, but as it turns out that test was from the blood and this is from the actual marrow.  According to the doctor, the blood test might be lagging a bit behind the marrow, but the marrow is the test to watch.

We also were able to reduce his gvhd meds to a negligible .04 ml, which is less than the saliva generated in my mouth when I think of pizza and beer.  If all goes well, I believe we could be off these meds within a month or so.  We have also reduced his office visits to every other week.  So great news all around.

On the down side, my friend’s little girl, Samantha, who I have mentioned in the past on this blog has had to go back to the hospital due to an infection in her dialysis line that spread to her lungs.  She was put on a ventilator last night, but has shown improvement this morning.  Please keep her in your prayers.

As you all know, my friend Ginger Rogers is running a marathon in Cutler’s honor in San Diego the first weekend in June.  This is through Team in Training (TNT), which is a part of the Leukemia & Lymphoma Society.  She is very close to breaking the $5000 mark, but we need your help!  Please donate to this wonderful cause: 

Donate:  http://pages.teamintraining.org/ntx/rnr10/gingerrogers

Follow:  www.gingertnt.blogspot.com

I also ask for prayers for my Aunt Beverly, who has been a strong prayer warrior for Cutler and a frequent commentor to the blog.  She is hospitalized and undergoing surgery in the morning.  Please pray that God guides the doctors and that she experiences a full and complete recovery.