G-Button out!

It's official:  Joshua's G-button is out!

A recent picture of Josh that shows his G-button, at Lake Tahoe.  

We saw his GI doctor yesterday and got the "all clear".  The orginial plan was for me to take it out at home last night, where he could be comfortable, but unfortunately we had a button malfunction and I couldn't get it out.  It's kind of funny to spend 5 years doing everything you can to keep the button in, and then when you're finally ready to take it out, it won't budge.  (It's like ray-ee-ain, on your wedding day.)  So there was some frustration and frantic message boarding on my part (trying to figure out what was wrong with the button), and then resignation that we would need to go back in to the doctor's office.  And then, probably thanks to all my fiddling with it the night before, the balloon on the button burst and it came out on its own!  And bonus:  Josh thought he did it, so he's feeling very pleased about the whole situation.  (I thought the button coming out and not being replaced by a new one was going to be a hard moment for him.) Then, as planned, a gauze bandage went on, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).

Celebration cupcake.

I've done some posts in the past about Joshua's feeding tube, including why he has a feeding tube, what I wish i would've known about the feeding tube from the beginning, how his eating is still very limited, and the excitement when we first found out that we could stop using the feeding tube.  These posts summarize how I feel about the whole situation:  grateful that Josh had the feeding tube while he needed it, and ecstatic that he got to the point where he no longer needed it.  Today I just want to post some pictures to memorialize the whole experience.

Joshua's first week, hooked up to all the machines in the NICU in Salt Lake City.

Christmas baby!  2 months old.  I got to change the NG tube while staying in a VRBO with the family in San Diego.

Love those little baby smiles.  

Big, beautiful eyes.  He still makes this expression with his mouth when he's unsure about something.  

We were living in Virginia Beach for most of Joshua's early life.  60 ML tube feeding syringes make excellent sand toys.  (This is supposed to be the Nebraska state capitol.)

First day post-op after getting a G-button placed, age 4 months.  No more tube coming out of the nose!

Kenny giving Josh a bath around age 6 months.  Plenty of baby fat, thanks to the feeding tube.

Josh was not orally eating by his first birthday, so mom overcompensated by getting him the biggest smash cupcake in all the land to get his hands and face dirty.  

First birthday bath following first birthday smash cupcake.  This is one of my very favorite pics of Joshua.

Lots of doctors visits, tests, and procedures as part of all of this.  Here is Joshua being a good sport during one of his nine sleep studies.

North Carolina, c'mon and raise up, take your shirt off, twist it round your head, spin it like a helicopter.

Lots of new pretend play ideas, too, including being a doctor...

...tube feeding stuffed animals (this bear had his own Mic-Key button - thanks Judy Corliss!)...

...and doing feeding therapy on the stuffed shark..

Josh proudly showing off his G-button, age 2.

All of us got very comfortable doing regular life activities with the button, including the important evening activity of wrestling with dad.  

Eating is still a challenge, but for the last year, Josh has been able to to eat (and drink) enough to keep growing and stay healthy, so now we get to take the tube out!

I do have 2 prayers requests:
1)  For healing of the stoma (that's the empty hole where the G-button used to be) - that there won't be infections, that if he needs surgery (he probably will) that it will be a smooth and uncomplicated process, etc.
2)  For Josh - he's handling it super well right now, but I think there might be some ups and downs this weekend.  Imagine telling a 4 year old that you're taking out their belly button - this is what it feels like to him.  He's had it for as long as he can remember and it seems to him like a body part.  Prayers for his adjustment to no G-button.

Thank you all for prayers and encouragement along the way.  I'll probably do another blog in a few weeks about how it's all going - but for today, signing off and celebrating with cupcakes!