Last night we went out to dinner and decided that since the kids behaved so well, aside from Mason falling in the creek, we would order a dessert for the whole family.  Dessert is quickly becoming one of Cutler’s favorite meals…especially when we let him feed himself.

Only this time we get a better outcome.  On Monday, we returned to see Dr. Okamor with Cutler as the patient for the first time in almost a year.  The doctor was quite amazed at how much he has changed in a year and was very pleased with his development.  I would be lying if I didn’t get a bit emotional seeing the two of them together again, but fortunately I kept all of that inside.  After all, Dr. Okamor was the first to think something was wrong and sent us to the incredible group of oncalogists that saved Cutler’s life.  We owe here a huge amount of gratitude.  The only downside of going back to the pediatrician is that Cutler now has to get shots on an almost monthly basis to catch up on his vaccinations.  Fortunately he is a tough kid and the shots hurt only for a few minutes and then he quickly returned to being the happy little boy. 

As for everything else, all is going great for us!  Cutler continues to expand his diet and is drinking like a champ from a sippy cup, straws, and even normal cups.  His weight is hanging around 25 lbs, but that’s nothing to worry about.  He is healthy as ever.  Next Tuesday we head into the see the oncologist again.  So it looks like, for now, we will see the oncologist and the pediatrician once a month.

 I have many more updates to provide and should hopefully have multiple posts up by the weekend talking about our trip to Stl, the party for both of the boys, Mason’s birthday, and our trip next weekend for Brother’s Day to hopefully Sunny Orlando.  Until then, hope all is well.

It is with great sadness that I inform you that my good friend’s daughter passed away early this morning at the young age of 14 months.  For those of you that don’t remember, Samantha is the daughter of my good friend Jason Muldoon, who lives in LA.  Here is a link to help describe the many issues she has fought through just to get out of the hospital. https://teamfricke.wordpress.com/2009/09/23/shout-out-for-more-attention/  Since returning home she fought through several complications and last night her fight came to an end after an incredibly tough week back in the hospital stemming from a cardiac arrest.  She is now in peace watching over all of us and I’d like to believe that Sami is keeping an especially close eye on Cutler for us.  Please send out prayers for Jason, Trisha, and family for strength during this incredibly hard time.

After a fun and full weekend visit from the Hopkins clan, we have decided that we need another weekend without rest and so we are flying to St. Louis to visit the entire family on Thursday.  My parents have graciously opened their doors to all family and friends that want to stop by for a visit with the stars of this blog…Mason and Cutler.  So, if you’re in the area on Saturday, everyone is welcome to come by for a visit.  Nothing formal, just an opportunity to catch up and thank everyone for all of their thoughts and prayers…and probably have a few beverages.

When: Saturday 8/21  2pm – ?

Where: 2077 Bowler Rd  O’Fallon, IL  62269

If you need directions, feel free to give me a call at 214 549 9444 or email me at aaron@teamfricke.com.

Cutler had his monthly check up today and he is doing AWESOME!!  So awesome, in fact, that he’s been taken off his last med – Bactrim 🙂  He will continue to see his doctors monthly, and eventually he’ll go once a year.  We’ve been given the green light for Cutler to get his vaccinations again by his pediatrician.  As a matter of fact, we’ll begin calling the pediatrician for routine issues, i.e., colds, fever, etc.  This is a HUGE step to getting Cutler, and our family, back to “normal”.  We couldn’t be happier…

I want to thank my mom and “grandma” Aunt Pat for staying with us and watching Cutler while Kobi was on vacation!  It is such a blessing that we have family so willing to drop everything to help us out.  And we all know “they” enjoyed the time with Cutler and Mason!

That’s it for now, just wanted everyone who has prayed for Cutler’s health to know that he is doing fantastic.  The only prayers we need is that his donor marrow percentage hits 100%.  They will test again next month.  It’s currently at 93%, so we still have room for improvement 🙂

Yesterday we spent the afternoon at the circus and it was great time for both Mason and Cutler.  This is Mason’s fourth circus and Cutler’s first.  We quickly learned that Cutler doesn’t have the attention span or patience that Mason had at the same age as he was often more interested in walking around or pulling on my hair or pinching my cheeks.  Regardless it was a lot of fun and very refreshing to be able to take both boys out like that and it also clearly tired them both out as it was a very long and restful night.

Judging on Mason’s performance in the video below, he might be soon traveling with the circus as well…as a clown.

And it’s a good thing, because Cutler’s chest and stomach are full of them.  As of yesterday it looks like the hole where he had the feeding tube is closing nicely.  Given the doctor’s statement that it would take up to six weeks to close, I think it is doing extremely well.  When we changed the dressing last night it didn’t look like there was any leakage…just another belly button.  So Cutler now has two nice scars/indentions from his two different central lines and a second belly button.  He will have plenty of stories to charm the ladies with when he gets older.

But the tube isn’t.  Yesterday we met with the surgeon to discuss having the tube removed and after he looked at it for a minute he asked if we just wanted to go ahead and remove it then, so I jumped at the chance to get Cutler that next step closer to “normal”.  So, the tube is now gone and replaced with some gauze and tape.  Dr Renard said that it could take up to six weeks for the hole to close on its own and if not we would have to perform a day surgery to close it up.  He also mentioned that we should know within a few days if it looks like it will be good on its own, so tomorrow we will change the dressing and see how things look.  I promise to post an update before the end of the weekend to let everyone know.  I will also take some time this weekend to post some more photos and videos of Cutler and Mason at the “gym”.  In the interim, here are couple shots of the boys from around the house.

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If it were only that easy, these are the words I would have used to rid ourselves of the tube today after the doctor gave us clearance.  That’s right, the blood work still looks great and the doctor is pleased with Cutler maintaining his weight without using the feeding tube for a month, so he told us to go ahead and schedule an appointment with the surgeon to have it removed.  Now the next obstacle to overcome is getting Cutler to take the meds normally.  But I welcome that challenge any day.

I know it’s overdue, but for the Fourth of July we made our annual trip to Lake Charles because there is no better place to spend your anniversary and shoot off some fireworks.  Here all kinds of fireworks are legal and fun.  Below are a couple of videos of Melanie dancing with her mom with sparklers and me trying not to blow my hand off because the other one has a Schlitz in it. 

Also, I wanted to post some photos from the boys playing in the sprinklers, but I had too many to chose from, so instead you can view them from this link if you desire…

http://gallery.me.com/aaronfricke#100027