What a day !!

I have not had one of these days from he!! for a long time !!

Sebastian had an appointment with GI this morning, he did gain a little bit, but has not grown in length. For the family in Holland......Sebastian (who is almost 4 1/2) now is 100 cm in length and weighs 15 1/2 lbs.................20% percentile here. i think in Holland he wouldn't even be on the chart !

We are adding another bolus feed at naptime, which means he is going to school with a backpack again, sigh.........

We are going to try a button a size down, since the one he has now is sticking out a lot (belly fat has gone down)

The good news is that medicaid is now covering MicKey buttons, which solves the whole problem I was having with CMS.
CMS stands for Children Medical services, a wonderful program that helps medically involved children and their parents. they make appointments with all the specialists and pick up where medicaid drops the ball. In Sebastian's case, CMS paid for his buttons ( $150 per button, some last a couple of months and some last less than a week, typically the balloon on the inside (that keeps the button anchored in the stomach)starts leaking slowly or pops. No fixing it.

Not every pediatrician is connected with CMS and so in order to stay with CMS, we had to change peds, which I really didn't want to do..............................now we don't have to. Sebastian will not be with CMS anymore, which by now really was only for the button situation, shoot, I can make my own appointments......

Anyhoo, Sebastian was a BRAT during the appointment, really testing behaviors. On the way home we picked up Max, who still is doing half days in school. Then came the WIC appointment..........................................................

OH MY GOD !!!!!!!!!!!!!!!!!!!!!!! I had all the RX and papers I needed, there was a new nutritionist.....................who gave me a little sheet of paper that needs to be filled out by the dr.

By the grace of God, she gave me checks for a month of pediasure, her problem was a lack of a diagnosis on the RX.

LADY, the kid has a feeding tube !!!!!!!!!!!!!!!!!!!!!!!!!
His file is at least 4" thick...................................

The ladies at the checkout even asked me...why in the world she only gave you 1 month ?(I have known these girls for almost 10 years now) Uhm, don't know, power trips, period................take your pick, just get me out of here, before I explode !!!

Max and Sebastian were bouncing off the walls or whining or crying
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGHHHHH

Bedtime is 7 pm tonight and mine won't be long after that !!!!