Monday, February 16, 2015

operation get grace to eat...

Grace started feeding therapy last Monday, on John's birthday.  I was prepared.  I like the process of becoming prepared.  I love lists.  So, I had lists of things that I had to get done before I could leave home, lists of what to bring with us and lists of instructions on how to run our home without me for a month.  I felt good about things.

I totally wasn't prepared.  I may have brought 7 bags of stuff (yes, it's just me and Grace) but I still forgot about 17 things we needed.  So I had to go shopping, several times.  But even if I had brought everything we needed for the month.  I still wouldn't have been prepared.

It's really hard to prepare yourself emotionally for something like this.  And I think, in all my preparation I forgot that this was going to be super emotional for both of us.  Grace's primary feeding therapist, Whitney, agreed that there is no way for parents to be emotionally prepared for the toll therapy takes on you.

 Our days are like the movie ground hog day.  We are in the feeding clinic from 9:00 - 4:30(ish) every day.  Grace has six to seven feeding sessions a day and the rest of the time, we are in the back waiting area.  They have a separate area for the day treatment families and it allows us to spread out.  But we are alone back there.  We have my lap top, Grace's iPad and my phone.  We have movies, books and some of Grace's toys from home. 

We are back there for hours every day and we are alone.  It is very isolating.  Which is something else I wasn't prepared for.  I didn't think about all the time I would be spending with a completely non-verbal person.

Our goals for Grace are that 1) she would eat solid food, 2) drink from a cup and 3) she would feed herself.  Our first week was spent getting Grace to eat during the specified feeding sessions.  We set the timer for 10 minutes and she had to eat for that entire time.  We were feeding her foods she already ate, so I naively thought it would be no big deal.  Boy was I wrong.  The first day, Grace cried, screamed and fought for 45 minutes the first session and then an hour and six minutes the second session.  That is a really loooooong time to fight taking a bite of food.  She finally gave in and ate the bite, but those were some really emotional sessions.

One day, she decided that crying, hitting and screaming wasn't working so she was going to try and charm the therapist.  She laughed, she blew raspberries, she said 'no' (very clearly) and then she said 'go'.  She did all this for 57 minutes before giving in and taking the bite of food.  It was very hard for me not to laugh during this session.  She's smarter than we think.

We cut out her purees, cold turkey, the first day.  Which is our goal, so I was totally on board with that.  However, this cut down her liquid intake so much that she got constipated.  She spent two very uncomfortable days and nights before the miralax worked.  I'd just like to publicly thank the inventor(s) of miralax.  I love you.

By the end of the week, Grace was eating during the feeding sessions without any problem and drinking milk off a spoon for me.  This is key, that we generalize the feeding therapy to me and not just have her trained to eat for the therapists at the clinic.

Once we are finished for the day, we go to the Ronald McDonald House.  We were able to get a room by our second night here.  YAY!  The first night we spent at a hotel, paid for by someone who wanted to make sure that all the families on the waiting list for the RMH didn't have to pay for a hotel.  There are some really amazingly generous people out there.

We get to keep our room for the whole month we are here, even though we are going home on the weekends.  Our room is smallish but comfortable.  We spend a lot of time in our room.  Together.  Alone.  Grace can't really handle all the people and activity in the common rooms.  We also get to share a bed.  I learned that Grace is a snuggler and likes to cuddle.  I'm not and I don't.  Oh well.  It's only a month.

We were both happy to get home on Friday to our boys.  The boys were also having a version of feeding therapy while we were gone.  My village is bringing my family meals two times a week while I'm gone.  Before I left, we discussed how they might be brought food they didn't like but they were to just say thank you and not comment on the food if they didn't like it.  Well.  They both ate quiche and liked it.  Say whaat?  Luke also ate rice that was brought with one meal and requested seconds.  This is something I can't get him to eat, no matter how I flavor it.  John decided that his favorite breakfast was an omelet, after never having one.  So Mark made him a sausage and egg omelet for breakfast one day.  I requested photographic evidence of John eating the omelet and I got it.  I'm thrilled about this trend and really hope it continues as more meals are brought this month.

I would say that overall, week one was a success.  We began training Grace to eat during specified sessions and to eat what was presented to her.  Most of the time the food was something she was already eating, like mandarin oranges, yogurt, applesauce and preferred crunchy foods.  However, we did present some new foods; peas, carrots and green beans, which she also ate without spitting out by the end of the week.

I don't think that week two is going to be any easier.  In fact, I think it is just going to get harder for both of us.  We are going to start her on drinking from a cup on Monday and progress from there to more and more solid foods.

So operation get grace to eat is off to a good start but we have a long three weeks ahead of us...



Stephanie said...

You are an amazing Mom! Praying for you in the quiet of your days.

LisaD said...

Praying for your family. It's so beautiful that you all have rallied together as a family to help Grace. May God's peace be ever present during this month!

Jamye said...

I love seeing the photos! Please keep posting updates!