(Round 2) Week 5, Day 1

First of all, over the weekend, Sunshine did fantastic.  On Saturday, even though she lost a bit of her first meal, she ate a total of 27.4oz throughout the day!  Hooray!  Sunday was a little lower, 24.4oz, because two of her meals were while we were out and those are always a little more difficult to keep her focused.

 
We went into the clinic this morning so excited over her progress this weekend.  Also, Sunshine weighed in at 24lbs 4oz.  That is 2oz up from Friday, which is great because she had actually gone down 1oz last week.  So, now it is like she gained 1oz since last Monday.  However you look at it, it is good that she is gaining!

She likes to try to do her stretches herself.

Today, Sunshine had some really good feedings and a really not-good feeding.  Since she lost 3oz at one of her feedings, her total for the day was, again, 24.4oz.  She is still dealing with a lot of congestion, even after being on antibiotics for a sinus infection for the past 3 days.  That congestion causes her to gag more easily on her food and well, you know what comes next.  But now it looks like volume was not so much of a problem as seemed to be a couple weeks ago.  Sunshine has been able to take at least three meals during the day that were either 5 or 6 ounces.  That is great progress.  If we can clear up her congestion, I have hopes that she will be able to take that amount at each of her meals.  (6oz 5 times/day would be all she needs in the day!)

We are glad this is our last week, and it is hard to have not made as much progress as we had originally hoped.  We are all tired and ready to be home.  But, where is home?  When we leave here we will spend the weekend in Terre Haute, IN attending a conference there.  (Which we are really looking forward to!)  Then we will drive back to Mishawaka where we will begin the arduous task of purging our belongings further in order to fit the necessities in a trailer.  Then we will take the following week to drive, in a caravan with Matt's sister and mom, from Mishawaka to Colorado Springs.  It is there that we will be able to make a place "home" again.

(Round 2) Week 4, Day 5

Today has finally been a better day for Sunshine!  Her congestion is already starting to clear up and she was able to eat a little more at many of her meals today.  Her total for the day was 25.2oz, with 12.8oz of that being of food!  Much of this past week her totals have been 20-23oz with around 10oz being from food!  It is so encouraging to see some improvement!  She also kept all her food down today, which is huge!

And while I've been so frustrated about the vomiting and low volumes, there are a few things Sunshine is doing very well with!  One is that she has been able to try lots of new foods and for the most part, does really well accepting them!  Some of the new things she has had this past week (all in smooth pureed form)--Italian Wedding Soup, White Bean Soup, Chicken Pot Pie Soup, Roast Chicken and Mashed Potato meal, and Peaches with Pancakes!  Another thing she has been improving on is her chewing.  For this, we wrap a small piece of food in fine mesh and hold it between her molars.  We then count to 20 as she chews up and down on the food.  Putting it in the mesh allows her to practice chewing food without having to "deal with" the crumbs spreading out around her mouth.  She does get very small pieces that come through the mesh and she has been able to manage those very well.  Some of the things she practices chewing are: Gold fish crackers, Cheerios, Graham Crackers, Club Crackers, Nutrigrain bars, puffed corn, cheese puffs, veggie straws, and yesterday she got to try oreo cookies! 

Here Sunshine is demonstrating how she practices her "chews"

 

 

Sunshine and the other little girl here with us started Periactin (the medication to increase appetite) yesterday and both had a much better day today!  We are so encouraged.  I am hoping to see some tangible improvement and stability over the last week.

Today was a beautiful, sunny day here and it was so nice to spend some time outside after the weeks of cold and rain we have had.  Buttercup was thrilled to wear shorts again!

It was a sunny day today!

Buttercup told me "I can do it myself" and when I came in the bathroom to check on her, found this.  Might not be the safest option, but I give her points for creativity!

Sunshine has been mastering this play table at the clinic.  Today she intently played for a good 15 minutes straight.

Playing outside in the leaves with friends was a perfect way to end the day.

Buttercup working on shooting a basketball.

Static Electricity!

Oh, how precious are these sweet girls all ready for bed.

(Round 2) Week 4, Days 3 and 4

This morning Sunshine broke her 3-day "keep it all down" streak.  Bummer.  Yesterday had been much like the days before--lots of congestion, low volumes, a bit of attitude showing up during feeding times, but overall successful because she kept her food all down.  This morning she was super congested, all in her chest and cough, and it was just too much for her.  So, her oral total for today was only 20oz.

Her cough and congestion has gone on so long without seeing any improvement, so today we got an appointment to see the Pediatrician here.  She could clearly hear all that was going on and prescribed antibiotics for a sinus infection.  She said the congestion was still "higher" and she did not have bronchitis or pneumonia.  That's good news.  So tonight we started her on antibiotics.  They say we should see some improvement within 48 hours.  I sure hope we do!

We also started another medication today.  There is an antihistamine called Periactin which can help increase appetite and help the stomach tolerate higher volumes of food (somehow!).  So we are doing a trial period with this to see if it helps Sunshine be able to eat and tolerate more food at a time.

My head is swimming with all the medications and vitamins we have going right now.  There are now 4-5 different meds we are giving daily, all at different times of the day!

Sweet friends looking at books together!  We are going to miss this little girl and her mom!

It was a pretty chilly walking to and from the clinic this morning so I grabbed Sunshine's winter coat from the car.  Thankfully it warmed up and she didn't need it the rest of the day.

We have one more week of therapy.  My prayer right now is that we can find some stability in Sunshine's volumes and good weight gain and leave here with a good direction of what to do next.

(Round 2) Week 4, Day 2

Tonight we took the girls to their first live show.  Oh, how they loved it!  When we were here in August and I saw that Veggie Tales Live was doing a show at the church we are attending, I secretly hoped we would be here for it.  At the time, we knew Buttercup would enjoy it because she knows the characters and many of the songs, but I figured Sunshine might be just coming along for the ride.  Well, the past couple of weeks, Sunshine has been watching Sing Along DVDs and many Veggie Tales shows during her feeding therapy, at her own request!  "Bob" is what she calls it.  He is clearly her favorite.  Matt and I both enjoyed the show too, but I think what was most fun was seeing both the girls so excited about it.  An extra bonus for them was a gift from the children's pastor at the church.  They love their new Bob and Larry stuffed toys.  Perfect.

Since the show was right at supper time, doing a feeding session for Sunshine just didn't work tonight.  We brought syringes of her milk/yogurt drink with us and gave her that before the show.  We'd planned to do a formal "meal" when we got home, but it was already 8:30 and time for bed, so it was a few more syringes instead.  I liken it to those days when you give your kids a happy meal in their carseat because it would just take too long to sit and wait for them to actually eat.  It was just one of those days.

Our therapy team has been brainstorming changes we can make to try to stop Sunshine's vomiting issue.  Thankfully, we have now had two days without any problems!  Hoping and praying that some of the changes are working!  I know there are reasons for all of the changes, but I don't know if I can' articulate them all.  So, without a lot of explanation:  We are going back to using the smaller spoons (the same as we were using last time we were here).  We are trying to limit the amount of air she gets when drinking, either by priming the drink up the straw before giving it to her or using a larger straw with a one-way valve.  We are only doing facial exercises and chewing practice at two of her feeding sessions, to give her a bit of a longer time between when she's actually eating.  We are continuing her reflux medicine in the morning (vs. evening).  We have been giving her a natural medicine for constipation each morning to keep her system moving.  It's a lot to remember!

Sunshine got her own purple glove to play with during her mid-morning session.

Sunshine's new high chair arrived at the clinic today!  Yay!  It is in two very large boxes.  It is going to take some creative packing to figure out how to get it and all our stuff back to Mishawaka where we will be packing our moving truck.  I look forward to telling you all about it because that will mean we figured something out!

(Round 2) Week 4, Day 1

Today, I am thankful for a day with no vomiting.  I am thankful that Sunshine got just over 26oz today.  I am thankful that although she lost weight over the weekend (thanks to getting her digestive system a little more regular), the nutritionist was not discouraged by that.  In fact, she said that the gain Sunshine has had since last Monday is right on track with what it should be.  (Sunshine weighed in at 24lbs 3oz today.)

You can continue to pray for Sunshine's cough and congestion as that is still a problem and is hindering her interest and ability to eat.

But right now, my heart is burdened with another family.  Some of you may know and others may not.  Our dear friends and teammates in Spain are grieving.  Their daughter has been fighting for her life in this battle against cancer, and the doctors have given up hope.  We know that we serve a God who does not give up and who is the answer to all hope.  Pray with us for Jenna and for her family.  Full information can be found on Pam's blog:

http://thruamomseyes.blogspot.com.es/

Medical information and details about her diagnosis can be found at the tabs across the top.

(Round 2) Week 3, Weekend

This weekend we managed to do five feedings each day.  Success!  However, each meal's volume was lower than we hoped it would be so our total volumes for each day were pretty low (23oz or so).  And this morning, Sunshine threw up during her first meal because of a gag she couldn't recover from.  Bummer.  Sunshine's cough has seemed deeper and her congestion seems worse at night than it has.  That is very discouraging too.  Especially because I am sure it is affecting her eating.

I am a little skeptical that she gained much weight over the weekend.  We'll see tomorrow though!  I hope and pray that she has!  Looking at her volumes though, it would take a miracle.  We did our job of not counting calories, only counting ounces, so, we did what we were supposed to do!  I just hope we don't have to go back to county calories.

Buttercup was trying out Sunshine's chair while she drank her smoothie.

We did have a fun weekend though!  Saturday Buttercup and I did some shopping.  There is something about a new pair of jeans and sweaters that just make ya feel like a million bucks.  (Sounds like there's a country song in there somewhere..."a pair of jeans that fit just right...").  Anyway, we had fun and she was very helpful in picking things out and asking me all the right questions to see if things fit.  Love this girl. I see many shopping trips in our future.

At Target...I loved watching her make faces at herself in this mirror.

Buttercup also helped with a bit of grocery shopping we had to do.  She did great!

Sunshine loves to play with balls.  Thankfully there are quite a few around here!  She is learning to throw (and how to say "throw").

Papa and Buttercup playing a game called "10 Days in Asia".  This was naturally followed by a make believe trip to Indonesia.

Here's to another week!  Praying for health and progress!

(Round 2) Week 3, Days 4 and 5

These past two days have actually been about the same ol' story as far as Sunshine's eating goes.  She will do great some meals and throw up on others.  Sometimes it is gag related.  Often it isn't.  Sometimes it seems volume related.  But not always.  Yesterday she totaled around 26oz for the day and today she totaled 23oz.

We have made a couple of the meals smaller, only offering 5.5oz instead of 7oz to try to keep her from throwing up because of too much volume.  That seems to be helping us out in the mornings to keep her food down.  Unfortunately, it doesn't help us get her total volumes up.  But that is where we are and to some extent, we have to accept that for now.  It is what her stomach can handle and that will grow and change with time, but we can't teach that kind of change.  In the afternoons, she usually seems to be able to tolerate more volume (no one can explain why that is).


 Today, being Friday, was weight check day.  Sunshine weighed in at 24lbs 8oz.  That is a whopping 7oz more than she was on Monday.  According to the dietician, kids are supposed to gain appx. 9grams/day.  Well, Sunshine gained more like 30grams per day.  Crazy!  The good thing about that kind of gain this week is that it shows us we don't need to be tube feeding her quite as much as we have been!  We are no longer supposed to count calories, but rather just count ounces.  Whatever food Sunshine eats by mouth is enough and she should get 16oz total of her milk/yogurt drink.  (So, today she drank 11oz of it during her meals, so we only tube fed her 5oz at the end of the day.)  Finally, it isn't so hard to calculate how much to tube feed her at the end of the day!  Hooray!  That is a huge accomplishment.  Now, we hope she can still gain weight (at least 9 grams/day) over the weekend, so we know this new plan is working!

"Say Cheese!"
Last night we went out to eat to celebrate Melissa's and my birthday.  These two high-chair girls were pretty cute. 
One day they will be eating kids meals of their own.  And that will be a day to celebrate!!!

They loved it when they could see themselves on the screen of my phone.  Here they are babbling away at themselves.