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!

Everything went well as expected and the line is now removed and he has minimal stitches. It was really nice to hold without the fear of pulling the lines out by accident. Unfortunately the doctor wants to keep him one more night to meet his billing quota. Ok, just kidding about the billing quota, but the doctor does want to keep him around another night just to be safe.

I wanted to let everyone know that Cutler is scheduled to have his central line removed tomorrow at 1:00 p.m. Should be a relatively short and uneventful surgery…Dr. Lenarsky says it’s much easier to remove than to insert. There is a good chance that Cutler will be able to go home tomorrow, but we won’t know for sure until after the surgery.

Aaron’s first day in his new job at Amdocs went well, although he is still without a laptop or email access.

I know I should add more to this post, but it is 9:40 p.m. and all I want to do is crawl into bed and get some sleep!

Thanks for the continued prayers for Cutler. God has blessed us with awesome prayer warriors 🙂

Tomorrow should hopefully be a busy day for the entire team.  I start a new job tomorrow, back with Amdocs on site at ATT, Cutler may get his line out, and hopefully Cutler will get to come home.  He has continued on without a fever and the doctor is in agreement that we should have the line removed.  We won’t know for sure until tomorrow, but if the surgeon can fit us in then Cutler will have the line removed and hopefully be home by bed time.  There was initial discussion of inserting a port, but he doctor thinks we should be alright without either and so this is the route we are taking.  The only downside is that for future blood draws Cutler will have to endure a finger or heel prick and for his future gamma globin (monthly) or medicine in case of hospitalization he will need to have an IV inserted.  But I think in the long run, given how well Cutler has done since transplant, we should be ok with the weekly finger prick to help avoid any future bacterial infection scares caused by the central line.  It will also be nice to see if he might work a bit more on his stomach without having the lines in the way and even more important I think we can get him in the pool once it warms up.  But I need to find out if this is possible given his gtube.  Unfortunately he is not showing much interest in eating at all right now, but hopefully that will change once he gets home and start to resume the family dinners. 

Despite the reason we were in the hospital it was nice to spend time with all of the 6th floor staff again.  Even better is that we, Cutler specifically, got to spend some time with Lucas.  Yesterday Cutler hung out on the pool table with Lucas as they both thoroughly enjoyed rocking the wobbly table and playing with the pool balls.  Today we hung out in a library for a bit where both boys played with some balloons and then again at the nurses station for quite some time.  I also had a few hours where Cutler wasn’t connected to anything and so we loaded up the wagon and headed off on an adventure throughout the hospital.  I think we managed to explore all corners of the many different buildings and it apparently wore him out as he decided to take a long nap on my chest while I got to watch the Masters.  The only thing that would have made it better was if it were at home.

Here is a picture of Cutler driving the wagon…

But at least this time when I was awake at 4 am it was to change a full diaper and learn that his fever had still not spiked.  In fact, he was so much back to his old self that he decided that he would like to play until about 5:30 at which time I relented and let him fall back asleep with me on the couch and he managed to sleep until 8:30.  After he woke for the day he continued to be in a great mood and so I took him on a little wagon ride around the 6th floor and he really seemed to enjoy this as he sat tall and proud like he was on parade.  Kobi is sitting with him now and still does not have a fever.  The doctor believes that we may have cleared the bacteria and so there is no reason right now to pull the line.  That being said, we will have the discussion to go ahead and pull it anyway some time next week to avoid this happening again.  For now, we are definitely in the hospital for the weekend and possibly home Monday or Tuesday depending on how everything goes over the weekend.  He is anxiously awaiting to spend the time with his mommy and I am anxiously looking forward to sleeping in my own bed, although it is nice to sleep next to Cutler as well.

Thank you everyone for their continued prayers and support, please also include Cutler’s “cancer twin” who just got over another infection and is still stuck in the hospital experiencing the same thing that Cutler is recovering from.  Poor Lucas has been through so much more than us, but he continues to prove that he is as strong a fighter as Cutler.  To be honest, I secretly think he was jealous of Lucas getting all of the attention at the hospital and so he decided to get sick so he could get some love to.

Here is a link to Lucas’s site for updates…

http://www.caringbridge.org/visit/lucasgebert