So Far So Good

“You can’t think thoughts of defeat and lack and expect to have abundance. You can’t talk mediocrity and expect to have victory. You are prophesying your future. If you want to see a shift occur in your own life, you’ve got to get in agreement with God.”  – Joel Olsteen


It’s Day 2 of no NG tube and Evan is doing well. I am keeping a feeding log to measure the amount he is taking by mouth. He isn’t quite at the full 26 ounces a day which is the goal but he did take more today by mouth than he did yesterday which is definitely a step in the right direction. The challenging part is in order him to take the full amount in a 24 hour period I have to feed him every 3 hours which is fine except when he decides to take a nap right when it is time to sleep and  I can tell you that once he is sleep it is hard to wake him up not to mention shove a bottle in his mouth to get him to eat. He is taking his medicine like a champ. I was apprensive that he would try spitting them out like he has done in the past but so far so good. I think I came up with a good system that works. Since I have to thicken his medicine to a honey consistency just like his food I put the medicine in the tip of a bottle nipple before feeding him his bottle. This serves two purposes 1.) The volume of the medicine is small so he doesn’t have to take as much 2.) The thickened medicine tends to stick to the side of the bottle making it difficult for him to get all of it. Evan did have a couple of emesis today. I will be talking with his doctor about that tomorrow. My gut tells me it is him eating too quickly  and possibly aspirating a small amount because he usually coughts (which is good because he is clearing the pathway to his lungs) which in turn causes him to throw up so I will continue to monitor that.


Tuesdays are Occupational therapy day.  Occupational therapy assists with daily living skills; right now for Evan that includes eating safely and using  fine motor skills.  Today he showed off and ate some bananas! He really likes bananas. He showed interest by opening his mouth and he did very good getting the food off of the spoon.  Occupational therapy also encourages him to use both of his hand for pulling and grabbing toys. Each week the occupational therapist give us ‘homework’ for the week and this week our homework is to continue with spoon feeding and work with him to drink his bottles safely. There is a rhythm to bottle feeding which is suck, swallow, breath. I think Evan is doing well with the suck and swallow but he gets so excited that he forgets the breathing part which is a very important component! One way to assist him in that is to rock him during feeding. You ever notice that your natural response to a fussy baby or a sleepy baby is to rock them? Turns out there are benefits to our natural instincts of rocking a baby that expand far beyond soothing them one of which is helping to improve the coordination of feeding so that he can establish a suck, swallow, breathe pattern. My other assigment is to continue doing mouth massages with a  Nuk brush and my fingers (thankfully he doesn’t have any teeth yet BUT he has a very strong bite! Individuals with Trisomy 21 can have low muscle tone so in order to help him strengthen the muscles in his mouth. Low muscle tone means that the muscles appear to be floppy and they have loose joints. Have you seen Evan doing Pilates!?! It is quite remarkable how flexible he is.


3 thoughts on “So Far So Good

  1. Angie says:

    Love the beautiful baby!! I took a Pilates class with Evan this summer, he felt sorry for me, didn’t kick me out but suggested that I take the beginners class!!!!

  2. Grandma says:

    That little warrior is flexible and strong! I noticed how he likes to throw his right leg up in the air and grab his toes. He’s doing better than I was when I had PT for my back!! He’ll get stronger every day and figure out his feeding coordination.

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