The Marino's Bambinos: Busy bees!!

What a busy busy week!!

Kade and I have been on the go with all these doctor appointments!! We went to the GI doctor on Wednesday and finally met face to face with him. We stopped the liver medicine (woohoo) and will test liver enzymes when we go this week. He is also going to test his thyroid, do a CBC and run some other blood tests. He is just making sure things are as they should be. He told Josh and I that we are in Gut rehab and the tradeoff for going home from the hospital is that we have to manage everything outpatient with him on a weekly basis or more if necessary...we will do what it takes, OBVIOUSLY!

We had Occupational Therapy on Thursday. Kade did really well once we got to the therapy portion, but when we got there...Oh My Gosh....it was the worst ever!!! He was screaming his head off, needed a new change of clothes and diaper and was acting like we were killing him!! When I finally got him all settled in his other outfit and cleaned up, I went to plug his feeds back in for his formula and one of the ports opened up and started spraying formula all over me, my clothes and shoes, Kade, the ground, the wall...EVERYTHING!! Right about that time, Josh walked in and helped me get it all straight. So finally after we got everything straight, we went to OT and worked on his eating and what not. She wants to see him once a week right now and smore than likely twice a week when she can fit him in for the the next coming weeks.

We also had an ENT appointment that day and met with Dr. Boone. First time seeing him but I have heard wonderful things. He was pretty great! Super nice, VERY smart and really knowledgable about Downs. He said no matter what, when you have a cleft palate you always need tubes. We are set to have them in the next 2-3 weeks. He really thinks Kades hearing issues will get much better once we do this. He doesn't know for sure if it is ALL fluid, but for sure some of his issues are fluid (which we knew). We are also set to do a sedated ABR test to truly see how he hears and what percentage he can and can't.

All in all, we are adjusted well to being home. From last Sunday to this past Friday, Kade's weight went from 12.3 to 12.10 :)))))))))))) He is certainly gaining but Saturday was a rough rough day. We went thru more diapers and outfits yesterday than I have seen in a LONG time. I decided that we will cut back from feeding him 4 big times a day to 3 until I can talk to the GI doc on Monday. I have already noticed a difference. He doesn't have the belly ache like yesterday and has only gone thru half the outfits he went thru yesterday.

People ask me all the time...what do yall need? what does he need? I joke now and say Diapers and Detergent! LOL We wash a full batch of Kades blankets, outfits, bibs, etc every day and I mean...FULL!! He is a messy messy boy!!

We are still so happy to be home and even though I am more tired than I have been in a VERY LONG time, I am so delighted to have him home! He is so happy and right where he belongs!!

Some pics from the week...

Kade's first outing!