Home Again

We are glad to be home.  A few minutes after coming in, Buttercup just kept saying how happy she was to be home.  I'm glad.  And it's a bittersweet homecoming knowing that we are going to have to say goodbye to it all so soon.  For now though, it is home and it is nice to be back.

Today was an odd day for feeding Sunshine because we were traveling, so things could have gone better.  She did well at breakfast and great at a late lunch once we got home.  Supper was going well until she gagged, which did not have pretty results.  I decided to supplement her calories with Pediasure into her tube.  Bad idea.  That all came back up too.  So, we'll start again tomorrow and I expect things will go a lot better.

In the meantime, here is our edition of "I went to Evansville and I came back with..."

I went to Evansville and I came back with a new drawing board (and a bunny, but my sister is holding it).

I went to Evansville and I came back with a new Penguin (and a drawing board) and I like my sister's bunny too.

We went to Evansville and we came back with this little girl who can eat and drink!

Week 3, Day 4

I can't believe we are almost done with our three weeks of therapy.  We have only one day left, and while I know that sessions will continue tomorrow (she does still have to eat, after all) there is a finality to it that I don't feel ready for.  Even today we started getting information for our feeding protocol at home--how to continue what has been started in different circumstances.  It's a little overwhelming as we've had to think through what life is going to look like these next three weeks.  I can't even comprehend it fully and we are going to have to truly take it one day at a time, praying all along for everything to get accomplished.

Hey there, cutie.

Today Sunshine did great.  By the end of supper tonight she had eaten/drunk a total of 29oz and we only had to give her 4oz in her tube (plus a little water throughout the day).  What wonderful progress from where we were three weeks ago.

I am sad that we aren't completely off the tube.  I'll be honest.  But I know she has a number of challenges and it is going to be a long process for her.  She's done in a few weeks what usually takes months.  And I am so proud of her.

Funny girl "relaxing" on a pillow between therapy sessions.

Every Thursday there is a little farmers market set up in the parking lot of the hospital.  As I walked through today, I saw they were giving away free bike helmets.  Buttercup has been playing with a helmet here these past couple weeks and I knew she would be excited to have one of her own (even though she doesn't have a bike to go with it) so I picked one up.  Unfortunately she was kind of disappointed because it wasn't a "barbie helmet and I love barbies."  (She's also never really played with barbies.  Where does she come up with this stuff?)  So we compromised and while we were at the store picked out stickers to decorate her new helmet.  It might not be barbies but evidently she loves Strawberry Shortcake too so she was very happy with it.

Tomorrow is going to be  a long day.  After a full day of therapy, we are going to drive to Indy to stay the night and drive the rest of the way on Saturday.  We are looking forward to seeing everyone back home again!

Week 3, Day 3

We are all feeling the stress of being here for so long.  Matt and I hardly see eachother because we are constantly trading off who is going to sessions and who is watching Buttercup.  In the evenings she can't go to sleep unless one of us is in the room (and even then bedtimes have been difficult and drawn out), so we get very little time to sit and talk.  We are so thankful for the therapy Sunshine is getting and the amazing progress we've seen.  We are thankful that Buttercup is thoroughly enjoying all the toys, books, and play areas in the Ronald McDonald House and that she is absolutely thrilled that we will be back here for her birthday.  (Though I am hoping to have a party of some sort while we are back home.  Stay tuned.)  We are thankful for the provision of this place to stay and all it includes.  And we are desperately looking forward to this season being over.

Right now Sunshine is napping on the bed next to me.  She is precious.

This morning, she got to try one of the oddest combination of foods.  Hats off to those who come up with some of these ideas!  Kix cereal soaked in milk for 20 minutes or so, then blended with a breakfast sausage.  She didn't hate it.  She didn't love it either.  I didn't try it.  Adding meats to the blends adds a bit more texture and sometimes that's hard for the kids to deal with.  Our total for the morning session was only 3.1 because we had to do such tiny bites of the sausage blend.  (Amazing to think that only 2 weeks ago, she wasn't even able to get 3oz in one session and now I consider that a low amount for a meal!)

At her next session, she had a strawberry nutrigrain blended with strawberry apple sauce and some peaches.  She did a total of 6.5 oz during that session.  Awesome.

And now, I have to wake the sleeping child (shame!) to take her to her lunchtime session.

Week 3, Day 2

A rough start to the morning.  I'm hoping things will go better after a nap.  She did OK during her first session this morning, only gagging a little on the peaches and loving the pureed nutrigrain bar (who wouldn't?). (5.9oz total)  Matt took her to the next session though and said there was lots of fussing and flailing arms -- her defense system against the oncoming spoon was in full gear.  She was clearly tired and not a fan of the avocado or strawberry yogurt.  (4.1oz total)

Now she's got an hour to nap and hopefully this afternoon will go much better.

She did do a little better in the afternoon sessions and a lot better during her supper, thankfully!  She totaled around 28 oz and we only had to do 3.5oz of tube feeding.

The girls watching Micky Mouse Clubhouse between therapy sessions.

Week 3, Day 1

So, the good news today is that we have return dates to the clinic.  However, we must be either highly ambitious people, or we are absolutely crazy.  I'm leaning toward crazy.  The dates that have opened up for us are September 22-October 24.  That would be a 5-week slot.  It also means we only have 3 weeks at home before we return.  We have a lot to pack into those three weeks, and I'll be honest--we aren't going to be able to do it without a little (or a lot!) of help.  There are a lot of logistics to figure out still.  So, if anyone is willing to hang out with our girls while Matt and I work on packing, we'd very much appreciate it!

* * * * *

Sunshine got to try two new foods today.  Avocado and Spaghetti in marinara sauce, both completely pureed of course.  I heard she made a face with every bite of avocado.  But she seemed to like the spaghetti a lot.  Good job, girl!

The doctor at the clinic was pleased with our weekend progress and we were especially glad to see Sunshine had gained weight over the weekend.  Today she weighed in at 23lbs exactly.  They also gave us some ideas to help with the gagging we saw with the fruits over the weekend -- different ways to present her spoon so it causes less of a gag reflex.

This afternoon Sunshine did not nap.  At all.  So by supper time she was really exhausted.
She did get a total of 28oz today though!  We only had to tube feed 4.5oz.  I am so proud of her!

Sunshine didn't want to stay in the play room between therapy sessions this afternoon.  I shut the door and next thing I know, she's standing up there trying to open it!

Buttercup is "fixing" the train table.

There is a large stuffed lion in one of the play rooms at the Ronald McDonald House.  Buttercup decided he needed to borrow her sunglasses.

Later, both girls decided to ride on his back.

Week 2, Weekend pt.2

Just a quick update tonight.  I'm tired and we are gearing up for our last week of therapy.

First, it is extremely hard to try to fit 5 scheduled feedings into a day when life goes on around you.  This morning we went to church, which automatically eliminated the morning snack time.  Then, in the afternoon, Sunshine slept till 5pm, which put afternoon snack time at 5:30 and supper at 8pm.  Oh dear.  (She did get breakfast and lunch though, in case you were worried.)

Totals for today were not quite as high as yesterday but still better than what we were seeing during the week, so I'd say she still did great.  Totals for today were: drink-16.09oz (yay!  She met her 16oz goal!), food-11.43oz.  TOTAL: 27.39oz.  Awesome!  We gave her 5oz of tubefeed and 5oz of water in her tube throughout the day.  At least we didn't save all that for the end this time!

Over the weekend we've noticed that she is having a hard time with the more liquidy fruits.  Blended peaches, pears, applesauce.  We've had lots of gagging which once resulted in spitting up.  They've told us a few techniques of how to deal with it, but it is still unnerving when it happens.  We'd love to see her be able to handle the thinner foods well.

This week we might get to try some more new flavors, and even some meat!  Really hoping that goes well. The more variety of things we can add to her oral food, the more we can eliminate from her tube!

Week 2, Weekend pt.1

Typically I would bunch the weekend together into one post, but today's progress was too exciting not to post.

Like yesterday, the day started off rough on the feeding front.  We desperately wanted to sleep in a bit, but Sunshine decided today was finally the day to wake up early.  She played semi-happily in her bed for a while and when we finally got up I realized all I had to do to prepare for her meals.  Oatmeal takes a long time when you have to make it and then let it cool before blending it into a puree and then measuring out proportionate amounts of oatmeal and applesauce so it isn't too sticky.  So, breakfast was quite late.  And she fussed.  A lot.  (morning total of 6.5oz)

Then, we had to go to the store to get a particular kind of yogurt and a few other foods to make Sunshines purees for the rest of the weekend.  If any South Bend/Mishawaka folks notice Cabot Greek-style low fat (or full fat) Vanilla Bean Yogurt, let me know where you find it!  We use it to make a yogurt/whole milk smoothie that Sunshine seems to really like!  Yay.  (I don't blame her.  It tastes like good vanilla bean ice cream.)

With our "quick" trip to the store, we ended up missing Sunshine's morning snack time.  She was getting tired so we decided to shoot for just lunch and nap time.  She did lunch great.  Made eating look easy...or just mechanical...but it was eating so that was good.  She ate/drank 9.6oz!  Wow!

Then she took a nap and slept and slept and slept.  During the week her naps are cut short to get to her feeding session.  She can usually get in 30 minutes to an hour.  Today she slept for at least 2 hours.  As a result, afternoon snack was pushed quite late also.  But again, she did great and ate 6.6oz...for a snack!

Then at supper, only an hour and half after her snack, she did great again and ate 7.6oz.

If you haven't been adding those numbers up in your head, that makes a total of 30.3oz for the day.  A-ma-zing.  And 15.5oz of that was of her yogurt drink (30 calories/oz).  The dietician's goal for her is 16oz of that each day.  When she initially told us that goal, Sunshine was drinking about 8oz of pediasure and I couldn't imagine how long it would take her to drink more.  Surprise!  (I think the yogurt drink tastes a lot better than pediasure!)  Her food goal is appx 19oz (depending on how calorie rich the food is) and today she got 14.8oz.  She is getting so close.

Tonight we only had to tube feed her 3.5oz and her daily 5oz of water (which we could be giving throughout the day, but we forgot.)

And yes, I know I mostly blog about Sunshine these days.  If Matt were writing the blog it could be all about how he and Buttercup got the laundry done, and played in the play room upstairs, and read books, and did puzzles and played with her new magnet dolls from Abuelo and Abuela and Tia Alison.  Thank you Thank you Thank you for the package!

The girls had fun with the puppets on our outing this morning.  And Buttercup loves playing with her magnet dolls any chance she gets.