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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The last two nights have been rather rough with Cutler as he has been a bit congested and not sleeping too well.  Naturally when we noticed the congestion we thought, or at least I thought, immediately that the leukemia had returned as this was one of the first signs that we noticed prior to his original diagnosis.  Fortunately today was his weekly checkup and so I didn’t have to wait long to be put to rest.  Cutler’s blood work still looks great and after listening to his lungs and looking at his ears the doctor thinks everything looks normal and so it is probably just some “rhino” virus so nothing to worry about.  He is starting to show more interest in swallowing and since we switched last week to pediasure in place of the formula, he has gained a pound.  We still have a long ways to go before we can get the tube out and we are waiting for a speech therapist so we can start to work on the swallowing some more.  Other than that, everything continues to look good.  Below is a video from earlier tonight where he is displaying is true desire to talk…he gets it from his mom.

Not sure if I posted it or not, but Cutler was given clearance to be around other children a couple of weeks ago and so this past Saturday we decided it was time to take both Cutler and Mason down to the zoo.  Mainly to wear them out, but also so Mason could ride the camel.  I had brought my nice camera along to be sure and get some good close up pictures of the camel ride and even was extra careful to charge the battery before leaving.  Unfortunately I wasn’t extra careful enough to remember to put the battery back into the camera so we had to settle for pictures from the phone.  Below are a couple of the pictures (in a new slideshow format I just discovered) from our trip…

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It feels like it has been months since I have posted anything, but I finally have a new computer and am able to get to my pictures.  Unfortunately I didn’t have a backup performed in April so I lost all of my Easter pictures, but I am hoping some techie will have the skills to retrieve them from my old hard drive at a reasonable cost.

Cutler went to the doctor, again, on Monday and had great blood results once again.  Unfortunately the last two times he has had to give blood from his arm.  We were hoping with the removal of the central line they could get blood with a heel prick, but so far they have needed too much and so they go to his arm.  He fights it a bit, but I think it is more a fight of being held down than anything else.  We are so fortunate that he is still too young to really know what’s going on.  Since we got back we were having issues with Cutler swallowing, but he is starting to make progress in this area as he is really starting to enjoy hot dogs, ice cream, and guacamole dip. He still puts quite a bit of other items in his mouth, but proceeds to spit them out when he is done sucking the nutrients out of them.  We are hoping to get hooked up with a speech therapist to help with the swallowing issues.  Would be great to get him to drink the formula/pediasure from the cup instead of the gtube, but one step at a time.

Everything else around here is going great and at a high rate of speed.  It has been so long since I actually worked from an office that I have forgotten how little time you get at home at the end of the day.  Throw in Mason’s ice skating, tball, and soccer and we are running nonstop.  I am coaching Mason’s tball team and that is proving to be quite an experience.  First game is Saturday, so stay tuned for details and hopefully photos.

Will try to post more often now that I am live again.  Can’t tell you how disconnected I felt without having my desktop at my immediate ready.  Below are a few photos of the boys playing tonight…

Now, if we could just get him to swallow it!

Our home computer is down and it is difficult to write long and insiteful posts from the iPhone so I will just let everyone know that all is still going good since being home. Cutler did well with the therapists and shows a lot of interest in eating, but very little interest in swallowing. I suppose it will be one step at a time.

Below are a few pictures of our pizza boys from Friday pizza night.

The transition back into normal life has been a smooth one.  Cutler is still a happy baby, and is enjoying not having his central line swaying to and fro.  It is so neat to be able to give him a bath and see his chest without accessories.  I was a little nervous about taking his bandage and gauze off today, as he used to get real upset when he used to have his dressing changed each week.  But a lot can still be said for keeping a smile on your face and singing “I’m a Little Teapot” while slowly peeling off the adhesive.  He only had a few little whimpers, and then was back to smirking at my out-of-tune songs.

 We were a little worried about his eating when he got home, as he was not too interested in his favorite yogurt melts and apple juice in the hospital.  But when his occupational therapist arrived today, he was not shy when she introduced him to hot dogs.  The only thing is he doesn’t like the casing.  So he’d play with it in his mouth, spit out the casing, and then reach for another piece.  He’s still a big fan of the guacamole dip…how he can eat mouthful upon mouthful of only dip and no chip is beyond me.  But if he’s interested, I won’t say no.

 Tomorrow brings the re-introduction of physical therapy.  I’m going to stay optimistic and hope that he will continue not to scream in protest upon her entry.  He is a lot more confident when it comes to reaching for things while sitting, which is what she had been working with him on for the past several weeks.  He’s still pretty shaking when standing and walking while holding onto your fingers, but hopefully his confidence will spread to all aspects of mobility soon.  I suppose we’ll find out tomorrow!!

 I hope this finds you all well!

FINALLY, Cutler was discharged from the hospital this morning!  Woo Hoo!  We got home around 11:00 am and Cutler promptly took a nap…he was so happy to be home and in his own bed 🙂  It is so nice to see his chest without the central line.  Hopefully, we’ll be able to remove his g-tube soon if we can get him to eat!  The doctors are recommending a nutritionist, who we can see via outpatient.  Got to get past this oral aversion!  He did eat quite a bit of guacamole dip this morning – ole’

Here is a picture of Cutler sitting on Clarissa’s lap typing up his own discharge paperwork:

Thanks again for the continued prayers and comments on the blog!