4,600

And her weight is 27.8 lbs! Sloane gained 4 oz. in the last month. At this age, children averagely gain 1 pound every 3 months which equals 5 oz. a month. Sloane is right where she should be in regards to weight gain. Our ped actually said that she thinks more calories were being pushed into Sloane than needed when she had her tube feeds on top of her oral diet. We kind of were force feeding her for the hydration purposes. She did not need the calories from the milk tube feeds for nutrition at all.

Dr. Reibman and I chatted a bit about Sloane's growth curve. She is in the 65% for weight and the 50% for height. She actually weighs more than the average child, but apparently is not as tall as we think she is!! LOL We hear from so many people "she is so tall", but in reality she isnt. She is average height. I asked if I should give her ice cream everyday to help her bulk up. Dr. Reibman laughed and said no, she doesnt need to bulk up. She is a perfect weight. I know this woman thinks I am a neurotic mom or just crazy!!

So the verdict is:

the mickey button will be leaving the building or in this case leaving Sloane's body. 

The mickey button is being pulled.
The mickey button is being removed.
The mickey button is being taken out.
Our ped is thrilled with all of Sloane's progress all around....her diet, the amount she drinks by mouth, and her growth. She said "it's time to call Dr. K and have her remove the tube."

With a different audience, I would have been waterworks central but our ped is no joke. She is all business so I contained myself to a teary eye. I know when I see Dr. K I will cry and perhaps snort cry. There is no way anyone, who has not gone thru this, could ever understand the emotions attached to having a medically challenged child. This feeding tube and mickey button OR rather plugging your child in to eat changes life as a parent. There are many people who have downplayed our journey for the sake of keeping us strong and many people who have looked at us with "poor things" in their eyes. Which ever approach they took, it never felt right. This journey can only be accepted, understood, and traveled if you are the ones living it day in and day out.

My husband and I have traveled this journey. It only affected the 2 of us and of course Sloane. Although she knows no different at this age. We, on the other hand, are forever scared. I still don't believe it. And I wont believe it until it is out and I can run my hand over my daughter's belly without a roadblock.

Having the mickey button removed and send all the medical supplies back is the end to ONE part of our journey. We no longer will be the home with the special child. We will no longer be the parents on hyper alert. Every time Sloane cries, I will no longer immediately touch her belly to see if her button was dislodged. And the list could go on and on.........

So after opening and closing Sloane's mickey button just about

4,600 times in 22 months (Sloane is 23 months old, but her button was not put in until she was 1 month old). 

Sloane Jacqueline's mickey button 

is officially closed for business!!!

 When Dr. Reibman said "it's time to call Dr. K and have her remove the tube." I said "now?" and she said "yes, now". 

When is now? More to come on the date of our bye, bye mickey button appointment!!