(Round 2) Week 2, Day 2

Sunshine set a new record for total oral intake today (I hope I get to say that many more times!)  She got 31.2oz!  She got the same amount of both food and drink -- 15.6oz each! We only had to give her 3oz of her milk/yogurt smoothie in her tube! (plus her water)  So thankful she's kept it all down for two days straight and had great totals.

Anita arrived this evening and we are thrilled to have her here!  We are all tired, so I'm keeping it short tonight.

Sunshine loves climbing up on the little chairs in the play room at the clinic.

(Round 2) Week 2, Day 1

Today Sunshine has done great.  No vomiting (always a praise)!  She got a total of 30oz of food and drink today, which is her record total.  16oz was food, which is the most food she has gotten in a day!  All we had to tube her was 4oz of her milk/yogurt drink and 6oz of water.

Over the weekend, we had pretty much only been giving her extra drink in her tube, but she wasn't getting as many ounces of food as she did today, so she wasn't getting quite as many calories as she was "supposed" to.  I had wanted to try it for the weekend and see if she was able to still gain weight.  Unfortunately, she lost 2oz since Friday.  *frown*  But, that's OK.  we'll be more diligent about being more accurate with her calories and not cutting corners on that.  Today she got at least 4oz more of food than she had been over the weekend, so it really worked to just do some extra drink in her tube without cutting corners.

Anyway, we're learning what works.  We're learning what her volume limits are.  We're trying to learn to gauge her feedings and read her expressions so we can stop the feeding without causing vomiting.  We're learning lots.  And so is Sunshine.

Since the focus is so much on increasing volume right now, the doctors have said they are not going to start adding texture to her foods yet.  We don't know if we'll get there before we leave or not.  I had to process that a little bit, but realize it would be best for her to be off her tube, even if she is still on smooth purees by the end of the month.  Even though we aren't adding texture, she got to try three new foods today!  Matt was doing the feedings with her because I wasn't feeling well.  He said she did well with the beef and noodle soup and with the green bean, garbanzo bean, applesauce puree. (Whoever comes up with these foods is very creative, aren't they?)  She gagged a bit of the third food-pureed cauliflower.  The therapist had to add water to it twice during the session because it was thickening up more the longer it sat.  But, even with the gagging, Sunshine was able to keep it down.

Buttercup is working hard at perfecting her rollerskating skills.

Sunshine and her sweet friend playing outside between feeding sessions.

Oh how they both love this giraffe!

(Round 2) Week 1, Weekend!

This weekend has been fun and busy!  We have tried to keep up with our feeding schedule and generally have succeeded with that.  On Saturday we went to the Zoo with our friends from the Ronald McDonald House/Feeding Clinic.  We did a lot of walking and had a great time.

Buttercup and a friend watching the Red Panda walking around his enclosure.  Buttercup thought he was probably trying to find a way out.  Since the Red Pandas are new to the zoo, she might be right.

Matt tried to help Sunshine see all the animals from her view in the stroller.

This guy was a favorite!  Buttercup fed him a dry leaf, like lots of the kids were doing. He was eating them up!  She didn't like it when he licked her hand while taking the leaf.  Did you know Giraffes have black tongues?

Buttercup and Sunshine posing with our sweet friend!

Is it time to go home yet?  I'm tired!

Buttercup had fun wandering through the gift shop.  Here she is modeling the "giraffe mask".

Having some quiet time after our busy morning at the zoo.

What a goof.  Gooo, Pack!  Except, she said she was cheering for the Bears.  Wait, this picture was taken the day before the game.  Guess she's really just cheering for Papa by wearing his hat...especially because this is actually a Ducks hat.  Anyway, she looks cute.

Sunday we enjoyed going to church in the morning then came home for lunch and some rest time.  I got a bit of grocery shopping in and then fed Sunshine her snack.  Then the girls had some play time before supper.  Sunshine had been doing well with her feedings all weekend until supper tonight.  I think it was because we only had a couple hours between supper and her afternoon snack and both were "sizable" feedings for her (6oz and 8oz respectively.)  She vomited at the end of her supper (8oz) feeding.  It's possible that it was the sheer volume she couldn't handle.  Or it's possible it was that volume so close behind the 6oz volume.  We aren't sure exactly what caused it.  That was a disappointing end to the weekend.  But I do feel like we're making progress, slow as it is, and we are learning what works best for Sunshine and for us.

One thing we tried for the weekend is not giving her any of her "blend" in her tube.  Instead, we have been giving her some of her milk/yogurt drink if she didn't drink enough during her feeding.  We increased her total drink to 18oz/day instead of 16oz/day.  Some of that goes into the tube.  We've also put an ounce or two of some sort of food as needed, and we've increased her water in her tube.  So, today, all we tube fed her was 3oz of yogurt drink and 8oz water (previously had been giving 5).  I am very curious to see if she still gained weight over the weekend, knowing that if she didn't it would be OK and easy to start making the high calorie blend again.  BUT, if she did, it would be great!  We'll let you know how that turns out!

Sunday night reading with another friend from the Ronald McDonald House.

This week we are looking forward to a visit from Matt's sister, Anita!  Buttercup and Sunshine don't know she is coming yet.  They are going to be so excited to see her.  Especially since we didn't get to see her during the three weeks we spent back home.  Can't wait!

(Round 2) Week 1, Day 4

Today was Sunshine's best day of eating since we've been back.  No vomiting!  Yay.  And she got a "decent" amount of both her food and her drink.  Other days one has been high while the other was lower or visa versa. Today she got a total of 28.5oz by mouth!  And since we have re-evaluated some of her calorie needs, for today all we put in her tube was an extra 2.5oz of her milk/yogurt drink (plus 5oz water).  I don't think that will be the norm yet, but we are certainly getting closer!  The flip side to this is that as the foods are denser and require her to eat less oz of them, we need to be giving her more oz of water in her tube.  So that's something we are still trying to work out and get to the right amount for her system.  I would love to see her start taking some water by mouth, but that may be asking too much of her right now.

Sunshine doing her chewing practice (kix cereal wrapped in fabric mesh) and playing with a piece of the fabric.

Praise report: We found out this week that our request for a chair like the one pictured above has been approved by Sunshine's insurance!  Wow!  We will be receiving it (in a couple large boxes) while we are here and are still trying to figure out the best way to transport them back to Mishawaka where we will be loading our truck.  Our chair is a "medium" size so at its smallest settings it will fit Sunshine now and it will be able to grow with her for years.  Many years.  And it will be blue instead of red.  We are amazed that it got approved already and we know it will be a wonderful chair for Sunshine as she continues to learn to eat!  If you are curious about more specifics, I'm sure you can google "Rifton Actvity Chair" and see what all it is capable of.

Back to Sunshine's feeding...a big part of the challenge is figuring out how to "boost" her foods so they have as much nutritional value and calories as possible (and that she can still handle).  For example, adding butter or oil to the veggies and soups and adding cream of wheat to the fruits adds lots of extra nutrients and calories to otherwise low-calorie foods.  I spent two hours this afternoon talking with the nutritionist about different options this afternoon.  My head was swimming with all the numbers and calculations.

I really hope we can keep things going (and Sunshine continues to gain weight) over the weekend so we can start strong next week and make even more progress!  This is a difficult and time-consuming endeavor.  After all, each feeding takes 30 minutes of dedicated feeding time plus 15 minutes before and 15 minutes after (give or take).  We need to do that 4 to 5 times each day.  The prep time includes making her smoothie and weighing out each portion of food for that meal.  We are also supposed to do as many of her facial stretches at each feeding as we can.  Oh, and work on chewing too.  The after-feeding time includes weighing and calculating how much she actually ate/drank for each item.  At the end of the day it also includes calculating total calories for the day and what additional tube feeding we need to add.  During the week we have a team of people to help with all those steps, but over the weekend (and when we go home) it is just us and we definitely feel the difference!

Matt gave Buttercup her first roller-skates lesson this morning and she loved it!  She's all decked out and ready to ride.

This evening, we needed to get out of the Ronald McDonald House for a break so we had supper at McAlister's and then Matt and the girls came home so he could do Sunshine's last feeding while I spent some alone time at Target.  Thank you, Matt!

(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 2

Today has certainly had its ups and downs.  Sunshine was rather congested during her first feeding session, resulting in lower volume.  She did great during her second session, but then was really tired after her nap and had low volume again during her third session.  We are thinking that her vomiting is caused by being too full and her digestive system just being backed up.  So we were glad she had a dirty diaper between sessions three and four.  She did great again during her forth session.  All day, down, up, down, up.  Even with all that, she has so far had a total of 19.8oz today.  We will see what supper holds!  I'm hoping and praying we don't have another situation like last night.

Also, the dietician is happy with her weight gain.  Sunshine is back on the curve she has been following for the past few months (she had a significant dip in weight in July).  She continued to gain well at home - 9grams/day!  The expected gain is between 3-6grams per day.  But since she is below the 50% they've decided that rate of gain is OK for now.

This afternoon Matt and Buttercup have gone out to pick up some groceries so I took to opportunity to wrap up a few presents for tomorrow's birthday celebrations.

(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!

Here we go again!

The past three weeks have been an absolute blur.  Even as we were driving down to Evansville yesterday, our life and routine of feeding clinic seemed more recent than the chaos and lack of routine we'd had while packing.

Packing up a house and moving out in three weeks is a big job, only to be taken on by the crazy or those who have a great support system.  Maybe we are a little bit of both.  But, we definitely couldn't have done it without all the help of our friends.  Thank you to all who watched the girls, packed boxes, carried heavy things, moved truckloads, vacuumed, cleaned, brought food, hosted us in your home, and gave us hugs and encouragement.  Handing over the keys on Saturday afternoon was monumental.

These girls had a great time together while the mommies were busy packing.

Buddies who came to play for the afternoon.

These girls have such a sweet friendship.

And now we are here.  Back in the same room at the Ronald McDonald House.  Ready to begin "feeding clinic" life again.

Our address is:
Sophia Thiessen
3540 Washington Ave
Evansville, IN 47714

This is our room!  The Ronald McDonald House really is beautiful.  This is where the four of us will be living for the next 5 weeks.  We are thankful there are common areas though!

Sunshine's pack 'n play sits in the corner.

Buttercup was so excited to get here.  She even asked to take a picture next to Ronald McDonald.  Something she had not wanted to do last time we were here.

 Our schedule looks something like this (we are now on Central Time):
8-9 AM - Therapy
10-11 AM - Therapy (while Buttercup and I do some "home preschool")
12-1 PM - Nap time for Sunshine between therapy sessions
1-2 PM - Therapy (Buttercup has some rest time after lunch)
3-4 PM - Therapy (Buttercup likes to come over to the clinic to play during Sunshine's last session)

Then, we have a couple hours off before we have supper and feed Sunshine for the 5th time each day.
We try to take turns doing the therapy sessions and feedings as much as we can, but it is a full and tiring schedule for both of us.  We are looking forward to seeing what they are going to work on with Sunshine next and excited to see more progress for her!  Our miracle prayer for these five weeks is that she could be getting all her nutrition by mouth and we would not have to use the tube at all by the end of it.  Please pray with us for that!

Welcome to Chaos

Our life in pictures...

Buttercup decorated boxes to pack her toys in.  She has also been a great help with packing!

Sunshine lookin' cute before she takes her afternoon nap.

Thankful for friends to play with!

We've been eating out a bit more than usual.

Our furniture is disappearing and making way for boxes.

Which have become fabulous toys.

A little movie is best on a rainy packing day.

The storage unit is slowly filling up (and quickly becoming more orderly than our house!)

Back to "Regular" life

Life has caught up with us since we've been back home.  We know we have lots of work to do for packing up the house, and sometimes it feels like all we can do is keep up with the realities of daily life, much less add packing into the mix.  But slowly we will start making a dent in the job and once we can see progress, I know it will go faster.

Sunshine has continued to eat well while at home.  Yay!  She is getting between 25 and 30 oz each day.  We have had a couple problems with vomiting in the evening.  So we're making slight adjustments to the schedule and foods to help with that.  Hoping we can get things figured out!  Preparing her meals and feeding her does take a lot of time though!  It is hard when there are so many other things I could be doing.  I have to remind myself how important it is to keep up with her eating practice and how Amazing it is that she is actually eating!

This week we have had therapy and doctor appointments for Sunshine.  We decided this week would be our last week with our physical and speech therapists.  These ladies have been amazing at working with our girl!  We will miss them!

Today we met with Sunshine's nutritionist who was so pleased with how well she is eating and her weight gain over the past couple of months!  She is back on the right "curve" after dropping percentiles over the summer.  I'm encouraged that her oral eating is keeping (and increasing!) her weight so well!

We have rented a storage unit and begun moving packed boxes out of the house.  As we continue to pack, it will be nice to have a place to put things so we don't have to live with the clutter of packed boxes over the next couple of weeks!  Buttercup swings between being excited about our upcoming moves and being "not so sure" about packing up her toys and books.  So, that's difficult.  We want to be sensitive to her needs during this transition time, but we know that it isn't realistic at all to save packing toys and books until the travel day (which is what she would prefer).

She LOVES it when Papa buys her flowers.