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Discharged

Wednesday, June 15, 2011

Whew! The last 24-48 hours have been crazy for us!

We were officially discharged from the Feeding Clinic on Tuesday. So, our last day in Dallas was spent packing up, cleaning the Ronald McDonald House, finishing up last conversations with the experts and saying goodbye to the friends (and fellow patients) we met at the Feeding Clinic.

Thankfully, my mom and brother, Barrett, were able to be with us during our "move" home and help us with the transition. I cannot thank these two people enough for helping us do that. It was a bit challenging to make the move from hospital to home, especially adding Bennett's new feeding protocol to the mix. Thankfully, the hospital sent us home with a days worth of pre-blended food for Bennett so that we could begin his Feedings immediately upon returning home.

Despite my best effort, we determined that we should begin Bennett's Feeding Protocol at home first thing this morning. We needed to get our highchair, toys, food, timer, scale and paperwork in place first.

I will post soon more details about what we are doing at home with Bennett and how we are doing it. But for now, I'll just say that our first four feeds went very well and, if it's any indication of how things will go in the future, I am confident that Bennett will do just fine.

I'm working through all the details that makes this fabulous program work.  As wonderful as it is, it is in no way practical.  And it does not allow for life to be conducted normally.  So, I'm having to figure out how to tweak the program to accommodate our family without interrupting the integrity of the program.  In the meantime, I'm trying to continue the program as it was being carried out at the hospital.

The hospital staff has recommended that we pick up Speech Therapy twice per week for feeding and once per week for speech (since Bennett is showing delays in his expressive skills...something that Oliver showed but just came late).  They also recommended Occupational Therapy twice per week with a therapist trained in Sensory Integration.  The hospital has recommended that we consider using an outpatient clinic, rather than our home, for his occupational therapy so that we have access to some equipment there we would not have otherwise.  So, there are changes to come.

Let's be honest, 4 25-minute feedings per day (28 per week), 2 20-minute Vest Treatments per day (14 per week) 3 30-minute Speech Therapy sessions per week, 2 30-minute Occupational Therapy sessions per week...in addition to Oliver's 1 1-hour play therapy session per week=1 mother who has no idea how the heck she's going to get out of the house.

Just therapies and highly-structured feedings combined equals to almost 25 hours of time - the same amount of hours as a part time job.  Both boys are worth it.  But it's no wonder I feel like I'm working while also staying at home.  It's just too bad those 25 hours are randomly stretched over the hours of 8am-8pm of any given day.  And it's too bad that you can't exactly take off from this job.  Weekends are no exceptions.

One of the things that gets me through is knowing we've been in a similarly hard place before but we've figured it out.   I know, somehow, we'll figure this one out too.  But I continue to remind myself we have a long road ahead of us.  I'm just trying to be as efficient and thoughtful about the process as I can.

As my friend recently said to me, "One day, Bennett is going to be out with the guys eating pizza and he's gonna stop and say, 'Thanks Mom.'"  She said, "That's when all of this will really be worth it."

She is so right.

That's the very thing we are working for.  Normalcy.  The gift of normalcy for Bennett.

2 Responses to “Discharged”

  1. Breck - this post brought tears to my eyes. You. are. so. strong. I don't know how you do it but I admire you greatly and your sons are incredibly blessed to have you as a mother! Miss you all!

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  2. It is going to work out eventually. Whenever something dramatic happens to us like that, I try not to think too far in the future. I only think about this day, and what I need to get done today. I've never been a great planner, haha.

    Just think, in a year, who knows how easy it will be then!

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