5 more days....................

It's Kelly here. I'm sorry that I haven't done an update in awhile. I finally got a laptop from CHOC again! YEA!!! It is awful with no computer access...especially in here where I have no connection to the outside world.....for two weeks now!!!! Holy Cow....this has been tough! But enough whining...lets get to business!

Abby had a great Thursday. She was taking 3-4 oz. of her milk or juice, every meal. (That is amazing for her!!!) And her food intake was great too! I was sooo happy! I finally was seeing the light! Then Friday happened. Her liquid volumes were ok, but her food intake was definitely down. I was feeling discouraged...where was that light I saw yesterday???

Friday night felt like Christmas Eve for me....I COULDN'T WAIT for Saturday, when I was going to be able to spend 4 hours OUT of this hospital AND spend it with MY ENTIRE FAMILY, TOGETHER!!!

Saturday morning, Abby had a great breakfast. Her ten o clock snack was terrible and her lunch was just ok. Then at 1:00 Ryan picked us up. YEA!!!! I was really nervous about how she would do for her first meal in the "real world".

We had decided to take the kids to a place called "Pretend City". Some of you may know what that is but for those who don't....it is a huge warehouse that is filled with a child size town. Complete with a kid size grocery store, (where they can shop and check out at a register) a post office, a doctors office, fire station, police station, a theatre...(an Abby and Eddie favorite...they loved to be on stage dancing for all to see!!! My shy children. HA!) There is a farm, a fishing port, a house complete with a huge kitchen to cook in, bedrooms and bathroom...and so much more. I think it was the best money that we have EVER spent! They absolutely loved it and so did we!!! My heart was the size of a watermelon as I watched my family laugh and play together!!!! It was heavenly for me!!!!! And Abby did absolutely AMAZING at snack time!!!!! At 3 o clock...we all sat down at the tables to eat. Mind you, these tables are right in the middle of all the action. It was super loud, with kids running everywhere. Super stimulating! And Abby sat down for 20 minutes straight, ate her snack, and drank her juice. Not one issue!!! It was the BEST meal/snack that she has had since we started this program two weeks ago!!! I was feeling sooo encouraged now!!! (I think a lot of it had to do with us not being in a quiet room, staring at her as she attempts to chew, eat and swallow the food we ask her to. It wasn't so controlled.) It was an absolute perfect day!!! When Ryan dropped us back off at the hospital it was all I could do to not completely fall apart. It was soooo hard walking back in those hospital front doors.

Today.....(Sunday), I woke up feeling like it was Christmas morning!!! Only breakfast and snack and then we were off to Newport Beach!!!! I was soooo excited!!! THEN...we had breakfast. It was a TOTAL train wreck. She wouldn't sit in her chair, she didn't want to eat...fought me on everything! Once again, I was feeling super discouraged. Snack was NO better!!! But then Ryan picked us up at 11 and we were off! YEA!!! We went to Rubys on the pier to eat lunch. I read Abby all the choices she had to pick from on the menu (something our therapist told us to do) and then asked what she would like. Without hesitation she answered, "macaroni and cheese with french fries and ranch". Perfect! Full of carbs and calories!!! That's what our girl needs!!! So I was feeling good about things at this point. Well, then the food came and she took two bites of the macaroni and one bite of fry, some juice and said she was done. She was up and out of her chair more times than I can count. It was NOT pretty. I was sooo bummed. After lunch we set up shop at the beach. We had "snack time" on a towel and she actually did pretty darn good. I was feeling a little better. We had an awesome day together. And my heart ached again as we walked back into the hospital.

And tonight...oh boy, tonight's dinner was probably the worst meal we have had yet. Again, she fought me on everything. She is up every two seconds, spitting her food out...she just doesn't seen to be hungry. (On a side note, she hasn't pooped in a couple of days, so I am praying that she might be feeling constipated and maybe it is affecting her appetite. We are giving her something tonight to help with that problem.)

Anyways, the past few days have been a total roller coaster ride of emotions. Up and down, up and down. Only 5 more days....I can't tell you how excited I am to get out of here and be home with my whole family again, but I am also scared to leave. Right now, I see no light again. Where is it????!!!!! This HAS to work!!! Her docs and therapist had told us that this third week is really where things fall into place. I am PRAYING my heart out that this is the case with Abby.

I am very anxious to talk to the team tomorrow...weekends are hard when there is no direct support from anyone on her feeding team. I will keep you posted as long as I have a laptop to do so.

Thank you soooo much for all of your love, prayers, phone calls, emails, texts and messages. They are what have helped me to stay positive and upbeat thru this. We feel sooo blessed to have such an amazing support system. We are truly grateful. THANK YOU!!!!

Love you....

Kelly