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.

I hope your mother’s day was as great as ours.  The boys woke up early so we could fix a special breakfast for Melanie.  Mason says he fixed it, but I was a lot of help.  We made banana pancakes, bacon, and bizquits (Mason’s pronunciation for biscuits).  Mason then served as a waiter and took and delivered Melanie’s order to the table…would be too messy to eat in bed.  Melanie and Mason then went to church while Cutler took a nap and I stood by on guard.  Mason then took Melanie out to a fine Mexican restaurant for lunch…Taco Bell and then we all went to Costcos for an exhilarating family shopping outing.  Finally, to top it off we celebrated like any other normal American family and shot off a bubble display like no other.  Below is the video proof, but first a special mother’s day shout out to my beautiful wife.  We have been through a lot over the past year, but your beauty and grace hasn’t wavered one bit.  All three of your boys love and appreciate you.

Cutler has found a new way to get where he wants and sometimes to just scratch his back…

Well, the tension built by lack of posts means this must be the post of all posts.  I will try to not disappoint.

Little man is doing very well!  We spend most of the day walking around.  He is no longer content just to sit and play; exploring is now the name of the game.  To help build his confidence, his physical therapist was nice enough to let us borrow her “walking wings.”  This looks like a back brace that straps around his trunk with straps on the top for one to hold on to.  So not only do I feel like I have him on a short leash, but it is a bright pink leash.  So while we have this he can walk around with his hands free, and my back doesn’t feel as though it will break up with me.  His physical therapist continues to be impressed with his progress: his balance is improving, and he is beginning to understand that standing up means going from his rear, to his knees, and then to his feet.  He is also trying to pull himself up more when he gets the chance.  For instance, he is no longer patient with watching me fill up the tub with water.  He reaches around, grabs the tub and, with a little help, pulls himself up to watch the water stream in.  He still dislikes being on his stomach, though maybe not AS much.

As for eating, he will swallow baby food-like items.  So anything with the consistency of yogurt will go down, but things that he has to chew get stored in his chipmunk cheeks for the most part.  Every once in awhile he’ll swallow things, so we know that he can do it.  He is trying almost anything you put in front of him, which is great.  So as soon as we hear from the speech therapist, we’ll have a great eater on our hands!

Cutler is also a babbling brook these days.  Aaron has instructed him that if he says “Kobi” before “Dada” or “Mama” that I will be fired.  So I now speak in the third person and point to myself while repeating my name as many times as I possibly can throughout the day.  So far there is nothing discernible amongst the baby talk, but it’s still quite adorable.

 So we’re working hard while keeping a smile on our faces!  I hope this all finds you well!

This past Saturday marked our first tee ball game for Mason and I.  Mason as the player and myself as the coach.  Despite my nerves and lack of patience, it was surprisingly a very good time.  There was a bench clearing brawl, but it was basically my team clearing the bench to brawl for every ground ball put into play.  Sometimes the kids even chased after the ball after THEY hit it.  I guess we have some work to do this week in practice.  Below are a couple of pictures from the game as well as a video of the speedy Mason legging out an infield single.

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