Thursday, June 17, 2010

hanging on...

Some days are just crazy and I feel like I am barely "hanging on". Nothing really specific, just a little of everything.

Today we are beginning our last 5 days of "in clinic" treatments with Vinny.

The staff will then come out to our home for home visits for the transition of the feeding program.

Vinny is doing really well...During the week when we are at the feeding program, he is not tube fed at all! It is so amazing!

He/we spend most of the day "taking bites" and "taking drinks".

Pretty much from 9am to 8pm with a few breaks and a two hour nap.

When we get home from the program at night, Jim and I will do two sessions with Vinny at 6pm and 8pm.

This doesn't leave much room to do anything but eat and drink!

Over the weekends, I have been doing at least three sessions with him during the day and tube feeding the rest of his calories at night.

Overall, he has made a ton of progress, and now we are getting ready to transition home and into out patient sessions.

To tell you the truth I am getting a little stressed out about this as his feeding sessions take up so much time!

*repetition of the bites/drinks
*weighing food between each session
*recording the weight of the food and drinks
*if he pukes, we measure that (not fun!)

The actual session time is between 30-40 min, but that does not count the prep time before!

We are on such a regimented schedule it makes me crazy!

On the weekends, we like to sleep in, get up and go when ever we we have to PLAN everything out and time things just right!

It may sound like I am complaining, I really am not! Just venting I guess...

Over the past few weeks, Vinny has started puking more at meal times...

We really don't know the reason...could be that he is "volume" sensitive, it could be behavioral...who knows...

This is when I am VERY thankful for the staff at the feeding program...

They document and graph everything! Right now, they are having us decrease the volume of Vinny's "drinks" and are adding Bene Cal (substance to put into his formula to increase calories). We will start here to see if this helps, and if not, they have a plan B.

Today was actually a little better for puking volumes...

We have been wanting this for Vinny for so long and are told sessions will get easier and faster over time.

With three other boys to take care of and spend time with, house hold duties, grocery shopping, and finding time just for me is hard!

So right now in this moment I feel like I am barely "hanging on".

The other day when I was swinging Vinny, I looked up in the tree and found Woody this way and just had to chuckle to myself and think that this is the way I feel sometimes!

Overall, our summer is going great! The boys just finished up swim lessons and are now swimming like crazy fish!

Frank is no longer scared of the water!

Avery is going off the high dive and doing crazy flips!

Leo has so much more confidence and can swim half of the length of the swimming pool!

I am so looking forward to going to the CdLS conference and having taking a "little" break from life...

I guess the conference could not be coming at a better time!

O.K. now I feel better! Thanks for listening (reading)!


  1. Oh wow! i can see how you feel like you are barely hanging on. I really hope that the pay off is really great for your family and Vinny. And hope the puking thing is easy to solve.

    Hang in there!!!

  2. Hang in there are a very busy lady right now!!!!! I can't imagine the strenuous schedule you guys have right now!! We are so glad to finally meet you guys next week! I hope you and Vinny can find a little time to relax while you are there!

  3. Staci- It is going to be a HUGE schedule change but we both know we are willing to make sacrifices to see our little boys eat!!! We are both going to need lots of LUCK the next 2 years:)'
    Katie Elbert