(Round 2) Week 2, Day 4

Today was a very rough day for feedings.

Sunshine vomited a lot during her 2nd feeding session, leaving only 2oz for the total intake of that meal.

Her total oral intake for the day was 22.7oz.
That is 8oz less than we have been getting this week.

She didn't take a nap today so she was pretty "out of it" and fussy in the afternoon.

I was pretty discouraged to hear about the vomiting episode and have tried to figure out any possible thing that could be the cause of it.

Please be praying we can figure this out!

The good things that happened today:
- Sunshine tried new pureed foods--eggs and ham, and mac n' cheese with seasoned hamburger meat!  She did great with both of those!
- Buttercup got to build her princess castle. It took over an hour of dedicated work and she loved doing it.  Papa and Tia were there to help with most of it and I got to help her finish when Sunshine and I came back from the clinic.
- We are going to try a new milk/yogurt combination tomorrow to see if that helps at all (one of my "pulling at straws" attempts to find a cause for the vomiting.)

They were having such fun putting all the pieces together!

Such dedication!

The finished product!  The goofy girl did not want to get a picture with her masterpiece.

Tomorrow Sunshine will get weighed.  I am really hoping she has gained weight this week since she lost 2oz last weekend.  I would love to see that she had gained more than that in the week!  We've tried to keep her calories up, despite the vomiting, and I think it is possible!

It has been fun to see how amazed Anita is at Sunshine's progress.  Since we hadn't seen her since before our August therapy sessions, she can see the drastic difference and improvement!  Even though it wasn't that long ago, it is so easy for me to get discouraged and the "little things" that we are struggling through right now and forget about the BIG improvement and accomplishments we have seen!

(Round 2) Week 2, Day 3

Today started off rough, but ended up pretty good.

In our first session, Sunshine ate 6.1oz, but she threw up 2oz of that so we could only count her feeding as 4.1.  So discouraging!  She was trying a new food: apricots with honey to sweeten them.  But she gagged on every other bite and overall had a hard time.

After some discussion with the doctor we've been working with, we've decided to switch which feedings we expect "meal-time" portions and "snack-time" portions.  Sunshine usually eats less (or can handle less) first thing in the morning, but is hungry for her 10am session.  Then, after her nap at 1pm, she isn't as hungry as she is at 3pm.  So we are going to do some flip-flopping in our expectations and see how she does.

Also, the nutritionist said to start boosting her foods again since we aren't giving her any of her blend.  That means adding 1/2 teaspoon of oil (which she wants us to vary so she gets the nutrients from different varieties) at each feeding.  That is 2.5 teaspoons in a day which is about 100 calories.  I need to talk to her tomorrow about how to count that towards her total calories for the day.  Today counted it as separate from the food calories so we only had to give her 2oz of her smoothie via her tube today!  (Plus 7oz water).  I'm hoping this is the "right" way to count the calories because it could mean less volume required to get her off her tube.  I hope to get a more straight answer on that tomorrow though.

So, Sunshine's total for today was 29.1 oz!

We have loved having Tia Anita here today.  Buttercup has gotten to spend lots of time with her and she was able to sit in on one of Sunshine's therapy sessions with Matt.

This afternoon Buttercup got to spend her birthday money at Micheal's (I love that store.)  She picked out a foam princess castle project (she'll probably put it together tomorrow, so pictures of that will have to wait.).  She also picked out a knitting spool and multicolored yarn.  She'd heard of it in a Berenstain Bears book when Sister bear buys one.  We had fun learning how to do it this afternoon.  It will take Buttercup a while to get the hang of it, but for now it is fun to do it together.

Sunshine fell asleep on our way to the store and slept the whole time we shopped as I carried her!

Buttercup loves reading books with Tia Anita!

Love seeing this at the end of the day!  Empty bottle and bowls means a good feeding!

(Round 2) Week 1, Day 3

Even as I type the title, I remember, "We are still at the beginning of our time here.  We still have lots of time to see progress.  Don't get discouraged.  It's going to be OK."

We had another bout of vomiting this morning and are trying to sort out the cause of that and how to keep it from becoming a pattern (or more of a pattern than it already is.)

Overall, Sunshine did well with her eating today though.  I've noticed that over the past few days, the amount of food has increased by a few ounces, but the amount she has drunk has decreased by almost the same number.  So, her totals have stayed about the same throughout the week.  They have increased spoon size, and that may be contributing to her increased food totals!  Yay.  Today she got just over 14oz of food and 11oz of drink.  (This past Tuesday, it was 11oz of food and 15oz of drink.)

But really, today was all about Buttercup.  Today is her 4th Birthday and we had fun celebrating her.

This morning Matt made her a special "4" pancake for breakfast and she wore her birthday crown on and off throughout the day.

Sunshine got to wear her crown too, though it only lasted a few minutes while she dutifully posed for a picture.

Buttercup helped me decorate some cupcakes to share with the therapists at the feeding clinic.  She also got to eat one, of course!

This little "gift giver" was SO excited to open birthday presents!

And I'm sure she will be well entertained for a while with her new puzzles and coloring projects!  She is excited about trying out her new roller skates tomorrow too.

I love this sweet, generous, giggly, thoughtful, dedicated, spirited, imaginative, friendly girl!  Happy Birthday!

(Round 2) Week 1, Day 1

We finished our first day of therapy with mixed results.  Since we've been home, Sunshine has started having difficulties with the volumes of food we were giving her, and that was true again at supper.

She did great through all of our sessions at the clinic.  Eating 5-6oz each time and keeping them down well.  I did all the feeding.  In the first session, I fed her with the therapists and doctors watching on the monitor (it is a strange feeling to know we are being watched!).  Then, in the other three sessions one of the therapists sat in the room with me to take data (marking each reaction to each bite) while I fed Sunshine.  I think this was to get her accustomed to the room and the routine and the therapists again.  I don't think she will have any trouble with them feeding her, and I am hoping they start that soon!

But then, supper came and we were only 15 minutes into her 30 minute meal before she couldn't keep it down any longer.  I was pretty discouraged.  Please pray we can find answers to that problem!

Sunshine weighed in at 23lbs 12oz.  That is 9oz increase from when we left three weeks ago...even though she was throwing up at home too.  Hooray!

We were all so tired throughout the day.  Bedtimes have been difficult so we could use prayer for that also.  We all need rest in order to get through these five weeks.  It is hard for me to imagine how this session will go, knowing how tired we were by the end of three weeks last time, and that we are starting this session already tired from our packing/moving frenzy.  We need to prioritize rest.

We are here with another mom and 2yr old girl who is just starting the program.  They will be here six weeks, so it will be nice to be here together the whole time we are here.  We have enjoyed getting to know them and our girls love having another little friend to play with.

In the afternoon, Buttercup got a birthday card in the mail.  She pulled a $20 bill out of it and asked, "But why is this in here?"  We told her it was money and her eyes got so big.  "REAL money? So, if I go to the store and there is something I want to buy I can buy it with THIS!??!"  She is over the moon excited to get to spend her real money!