(Round 2) Week 3, Day 3

Today was my birthday!  We had a fun day.  The therapists had donuts at the clinic this morning, which was very fun and special!  After our day of therapy Matt and the girls took me to Dairy Queen for blizzards and we wandered around Hobby Lobby.  Buttercup gave me lots of advice on spending my "birthday money" which was super cute.  Tomorrow we are going out to eat with our friends to celebrate Melissa's and my birthday.

Me and my girls.  Love these two treasures!

Matt and Buttercup, who was cold after eating her blizzard.

Sunshine had an up and down day for feedings.  Her major "down" was during her 2nd session when she lost 6oz...all she had eaten at that point.  Big disappointment!  Amazingly, she was able to keep eating after that and got 3oz down.  Her biggest "up" for the day when supper time when she ate all of her food...7.2oz!  And kept it down!  Her total for the day was 25oz, which isn't too bad.  We had to give her a total of 8oz of food/drink in her tube today, but since we did some of that right after the bad meal, we didn't have too much to do tonight.

Starting tomorrow we are putting a 5.5oz "cap" on her 2nd feeding session.  They aren't going to send in more than that so we will see if she can keep down that amount.  For some reason, she is able to eat so much more in the afternoon than she is in the morning.  She has everyone a little baffled on that one.

We are also starting her on some natural constipation meds to try to get her system to keep moving. She does seem to have more problems when she is backed up.

I'm sure when you started reading the blog, you were expecting to read more about how well Sunshine was eating and not about the ups and downs of her digestive system!  I hope we can have less of that and more of the eating progress soon!

On a positive note, Sunshine got to try pureed chicken curry today!  And she liked it!

(Round 2) Week 3, Day 2

We have had another pretty good morning for Sunshine.  She is napping now, so we'll see what the afternoon holds...

During her first feeding this morning, she gagged a bit so we went very slow and gave her small bites to try to keep her from losing it.  This morning that worked (it doesn't always).  She got 4.3oz of prune/pear mix and cream of wheat with applesauce.

At her next feeding, Matt had her and she did really well.  She coughed a bit (seemed cold/congestion related) and lost just under an ounce of her meal.  But even with that happening, she kept 6oz down!  Hooray!  That's a good start for the day.

We have been communicating with her GI doctor today and his recommendation is to slightly increase the dose of her reflux meds (we have exact dosing instructions, don't worry.)  We asked about whether it is worth doing a "Gastric Emptying Study" to see if there is an "emptying problem" somewhere along her digestive system.  The verdict is that study is very unreliable for children Sunshine's age, so it is not recommended at this time.  So, we continue to play our guessing game and hopefully increasing her meds will make some difference.  Also, if she can get over this cold/congestion junk, I am sure she would be doing better!

Sunshine is proudly demonstrating how quickly she can walk into walls (and tables and chairs and anything or anybody else in her way) with her new walker.  She just loves to GO GO GO!

***Updated***
The afternoon went great too!  Sunshine did well in both her afternoon sessions at the clinic and her supper time with us!  Hooray.  She even got to try a new food -- spinach souffle -- and she liked it!  She ate almost all of it and did not gag at all.  Awesome!

Picture proof of her "spinach mustache"

Sunshine totaled over 27oz of oral intake today.  That's our best day in a week!  I am so thankful for this good day.  We still had to give her 6oz in her tube, but she actually got all the calories she needs by doing that, as opposed to other days when we've had to cut calories because there were just too many left at the end of the day and she wouldn't have been able to handle the quantity.

Keep praying for her cold (and that we all stay healthy) and that this progress can continue!

(Round 2) Week 3, Day 1

This morning has started off really well for Sunshine!  We went into the clinic updating everyone on how she did over the weekend and we are encouraged and hopeful for a good week ahead.

Sunshine got weighed and she gained 2 oz over the weekend! Yay!  She weighed in a 24lbs 1oz!  So happy about that!

And she made it through her feedings without any serious issues.
She got 4.1oz in her first feeding and 6.5 in her second feeding!  That second one is where we started having major problems last week, so keeping that down is a huge accomplishment!

Then we had session three.  And she couldn't keep it down.  What a bummer!  She lost most of her feeding that session which was so disappointing.  She has been pretty congested today and that is the only thing we can think of that was a problem.  She had some gagging during the meal too, but that was odd because usually she does really well with the foods she was eating.  And her volumes for that meal were fairly low anyway, so it shouldn't have been an "over-full" issue.

Thankfully, she did great in the fourth session and at supper.  Just over 6oz in both of those!  So she had three meals today where she ate 6oz and kept it down!  That is actually really good for her!  So despite the one "bad" meal, I'm trying to look at the bright side.

Also, Sunshine's walker was delivered this evening.  I didn't get a picture of her using it yet, but that should be coming soon.  It is wonderful.  She can walk so easily and so far with it!

I am still hopeful that this will be a good week and we will see some progress.  Our major issues today seemed to be congestion related.  I would love to see that go away!  Lots of people seem to be sick right now and it is awful.  We still had to tube feed Sunshine 6oz tonight, though to get her calories in it really should have been 9oz.  I just knew she wouldn't be able to keep that down.  So, we will pray that tomorrow goes better!

The girls in the "bed" Buttercup made over at the feeding clinic.

(Round 2) Week 2, Weekend

This weekend was quite encouraging!  (Thank you for your prayers!)  Sunshine did not throw up all weekend and had dirty diapers both days.  I know, too much information, but we get excited about those kinds of things around here.

On Saturday, my friend, Melissa and I went to a women's conference at the church we've been attending.  It was a good time to be encouraged and challenged.  Matt was home with both our girls and he did great keeping up with Sunshine's feeding schedule.

On Sunday we enjoyed our time at church and went out to "Jason's Deli" afterward.  They have a good salad bar and free soft-serve ice cream for everyone!

Sunshine finished her lunch (which we brought with us) with 8 minutes left to spare!  And did great eating in different surroundings.

Buttercup really enjoyed her vanilla ice cream cone.

Our total volumes for both days were still lower than we would like them to be, and we had to give her around 7oz of food/drink in her tube both days.  But she kept it all down! That has become my latest mantra...She only ate __, but she kept it all down!

Today (Monday) is starting off promising too, but more about that tonight...

(Round 2) Week 2, Day 5

*Sigh* We are two weeks into our five week therapy and I have to admit, I was hoping we would be making a lot more progress at this point.  I am discouraged.

Sunshine has continued to have issues with vomiting considerable amounts.  We are doing all we can to help her system move along well, and it just isn't making a difference yet.  And we can't make too many changes at once because then we don't know what really helped.  So we are slowly trying one thing after another and hoping to see some consistent results.  Today the doctor suggested that if we do see a significant pattern and it seems to be an "emptying issue" as opposed to simply a volume in that meal issue, we may see the GI doctor here.  I hope and pray we can get things figured out before that happens, but it is good to know that option is out there.

I went through our food logs and documented 15 episodes in the past month.  How miserable!  I will show her the list on Monday and see where we go from here.

Today was much like yesterday.  Sunshine's totals were very similar (22.4oz for the whole day) because she lost 5oz during her mid-morning meal.

We are going to try hard to fit in 5 feedings each day this weekend (instead of 4 that we've done other weekends), but we know that is going to be difficult also.

Buttercup had a great day today as she and Matt and Anita went to the Children's Museum nearby.  She had a great time playing with the water and exploring all the different rooms of the museum.

Tomorrow I am going with our friend, Melissa, and her little girl to a woman's conference at the church we've been attending here.  I think it will be refreshing for both of us!  I am thankful Matt is able to watch our girls to give me the opportunity to go to this.  Pray for him too as he will be doing 2 or maybe even 3 of Sunshine's feedings while I am gone!

Love that sweet smile!

(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!