Week 1, Day 1

Nearly done with our first day of therapy.  Matt is with Sunshine at her last session today while I stay back at the Ronald McDonald House with Buttercup.

At the first two sessions, they had me feed Sunshine while the doctor and therapists observed from a video viewing room.  At the first session, we tried Cheerios, apple sauce, oatmeal and milk.  Reaction was pretty typical for Sunshine.  She liked the cheerios and started off happily eating them She was barely willing to try to applesauce when presented, but liked to play with it on her tray.  By the time we offered oatmeal or milk, she'd had enough and absolutely refused to try either one.

Session two we had PB sandwich, vanilla pudding, cooked carrots, a slice of cheese, and milk.  This time she did like the milk, but was not efficiently keeping it in her mouth.  She ate a few bites of pudding and a few bites of carrots (those took a long time to chew though).  She even tried five or six bites of the cheese, which was completely new!  But, when I tried to give her the sandwich, she was not at all interested in trying it.  And that was the one I told them she would like!

The third session was different.  I got to observe while the doctor and therapist sat on either side of Sunshine.  They wanted to start our time here with getting Sunshine used to them and familiar with the structure of the therapy session so they did practice with a "dry spoon" and empty bottle so there was no menacing food to react to.  Sunshine did great.  She did really well at opening her mouth to receive the spoon, closing her lips around the spoon and taking bite after bite after bite and pretend sips from the straw-bottle.  A few times it seemed Sunshine thought it was a joke that there was nothing on the spoon, and they could tell she was really trying to suck on the bottle even though nothing was coming out.

Therapist doing stretching exercises on Sunshine's mouth.

Matt just came back and said for the fourth session they added water to the bottle and spoon.  She spilled a bit of the water out of her mouth, so they will work with her on keeping her mouth closed while drinking.  Also, with her bites, she would put her tongue out when she wasn't supposed to, so that is something else they will work on.  (I think it's because she wants to taste what's coming before letting it into her mouth, but that's just my idea.

Each session begins with setting a timer and Sunshine gets to push the Start button.  Then, after each bite, she gets to watch a bit of a cartoon and gets lots of verbal praise.  She's already very good at the "self praise" and would repeat "Good Job" while giving herself a thumbs up.  She loves the attention!

Sunshine's schedule is therapy at 8 AM, 10 AM, 1 PM, 3 PM.  Each session lasts about an hour.  Tomorrow they may start giving her food!  We are certainly tired at the end of the first day.  We were not fully rested going into it and felt quite overwhelmed at the beginning.  Now I'm less overwhelmed, just tired.  Buttercup and I did some "school" while Matt took Sunshine to the clinic, which was a lot of fun.  Looking forward to sleeping tonight!

Buttercup and Mat Man!

You say "Jump" and we Jump!

It seems that a lesson we need to learn is stop planning ahead.

We had been told that all openings at the feeding clinic were booked through August.  We were waiting to hear if we would be able to get in sometime in September and in the meantime, slowly starting to think about packing up our house, saying goodbyes, and scheduling appointments with all the necessary doctors.  I have been constantly trying to work out a perfect plan of action: August - pack up house; September and October - Feeding Clinic; November - move to Colorado.  Perfect, right?  Guess not!

Today we got the call.  There was a cancellation and they had a three-week opening available.  Did we want to take it?  By the way, it starts on Tuesday. Yes, we'll take it!  We weren't about to let this opportunity slip by, even though it didn't fit into my perfect plan.

So, this weekend is suddenly filled with rescheduling appointments, packing, and much quicker goodbyes than we wanted, but we'll be back in three weeks!  And, while I wish I had a perfect plan, I do not know exactly what is coming next.

You can be praying for us! (see the "Prayer Requests" tab for specifics in how to pray.)
I will be updating regularly with Sunshine's progress.  I am sure there are wonderful things to come!

when "Yes" turns into "YES!!!"

Sunshine's secondary insurance has approved the remaining requested therapy!!!  We are astounded and so thankful.  Both of us were near tears at the news.  We will be able to be at the feeding clinic for the full two months, with all the medical expenses covered.  God is so good. 

We've been in such a long waiting game for this, that I just had to laugh when Matt told me we couldn't schedule exactly when we'll be able to go yet. Evidently the person who will do that is out of the office all of next week, and will likely be so swamped when she returns it will take a few days for her to contact us about it.  Sigh, what's 12 more days when we've already been waiting months?  So, we're expecting to be there in the September-October range, but actual dates won't be set until the beginning of August.  Also, once that is scheduled they'll be able to schedule with the Ronald McDonald House so we can stay there for the duration of Sunshine's therapy.

We've been talking to Buttercup about the upcoming transitions for a long time, and bring them up often so she is somewhat prepared when the time comes.  Today we got to tell her that she might get to have her birthday (end of September) while we're at the feeding clinic (a.k.a. at the Ronald McDonald House).  I love how this girl just takes everything in stride; instead of being upset that she may not get to have a party with friends she knows well, she said, "Yay! I've never had a birthday there!"  She and I may both get to celebrate our birthdays there, and frankly, I couldn't be happier about it.

When God's "Yes" is different than our "yes"

Today we received the first bit of promising news about insurance approval of Sunshine getting therapy at the feeding clinic.  And, while it isn't the full approval we had hoped and prayed for, it is still approval, which is huge!  Sunshine has gotten partial approval from medicaid, which will cover a certain number of days of therapy. We haven't been given an exact number, but the ball park we're estimating based on the info we do have is about 3 weeks worth of intensive therapy (out of the requested 8weeks).  The clinic is will still contact Sunshine's secondary insurance to see about coverage for additional days.

We also found out that the schedule for August is full and there is a small waiting list to get on the schedule, but because we have been waiting so long, we are near the top of it.  So, we are tentatively planning (and continuing to pray) for the feeding clinic to happen sometime in September.

As I processed this "yes" today, I kept coming back to the idea that God knows what therapy Sunshine needs and how much time she (and we) need at the clinic.  She has progressed so much in the last 5 months and I am excited to see how much further she can go during this intensive therapy.

There is something so comforting about a schedule, even a tentative one, that I can plan around!  To know that we will be here for August and can continue to meet with people and see friends is great.  It is almost August and with schools beginning, I had been wondering what to do with Buttercup while we're waiting on this unknown trip to the feeding clinic.  So, to know that we'll be at the clinic so soon after schools begin and it's OK to not enroll Buttercup in a preschool here is great!  I am excited to do some "home-school" activities with her while we're at the clinic.  Then, we'll look for a good option for her in Colorado Springs when we get there.  Also, to have a month to pack up and prepare for this next big move is good for my sanity.

Rejoice with us in this "Yes"!

Home from the National Down Syndrome Convention

I come away from this weekend with the deep knowledge that we are part of a special, unique, and strong community.  Though we only had opportunities to talk with a handful of people (out of the three thousand or so who attended the conference), there was an overwhelming feeling of being surrounded by people who understood.  People understood the developmental delays, the effort that therapy takes, the complete joy in each new tiny accomplishment.  We were surrounded by people who've walked this road.  During breaks it was fun to see the adults and teenagers with Down Syndrome talking and laughing with one another.  During sessions, I loved watching the little babies whose parents are so new to this world--those little babies' eyes and noses and tongue, all beautiful in their own unique way.  My Sunshine was a little baby like that.

Over the course of three days, Matt and I attended seminars on handwriting, phonics and reading, speech therapy related to feeding, communication development, math, exercise, gross motor skills, and technology all geared to the specific, unique needs of children with Down Syndrome.  With that flood of information, we felt quite overwhelmed at times; however, we also came away from many sessions feeling encouraged that what we have been doing for Sunshine has been good and has been enough.  (With the constant feeling that I should be doing more, that was quite encouraging!)

Some of the specific things we learned that we can put into practice:
- For handwriting development, starting with coloring, small hands need small tools.  Children are able to color with more control and better finger grip when they have short, thin, crayons to work with.  Sunshine has never liked to color very much, but when I handed her one of the presenter's sample crayons, she scribbled away!

- For a child with low tone and difficulty feeding, proper support from the feet up makes a difference.  We'd always gone back and forth on how much Sunshine needed to wear her ankle braces while she's just sitting in her high chair, but if having her feet better supported with help her focus on the work eating takes, we can do that!

- Children with Down Syndrome are completely capable of being bilingual.  We've been asking lots of Speech and Language Pathologists and other professionals about this for the past few months, and used the opportunity to ask more questions at the conference.  We were encouraged to speak and read to Sunshine in Spanish now so it is a familiar when we get to Spain.

- The foot braces Sunshine wears will not change the looseness of her ligaments.  What they will do though is provide her with adequate support and teach the correct placement and motion of walking so through repetition she will learn how her feet are supposed go and will one day be able to go without them.

- Something that is true about many developmental milestones is that it isn't about getting to the milestone faster; it is about building a strong foundation and mastery of each skill before moving on to the next one.  Trying to achieve something before she's ready will only be frustrating to both of us.  Walking would be an example of this.  Sunshine is doing great and is close to being ready to walk, but we can continue to work with her balance and shifting weight from one foot to the other before she'll really be confident and ready to walk on her own.  It is about breaking the goal down into each skill needed to accomplish it.

We were also overwhelmed by the number of resources available at the conference: books on every type of development, CDs, shoes, board books, DVDs, all of the "Talk tools" and "Handwriting without Tears" products, and all of the "Signing Time" DVDs.  It was a challenge to sift through what we need now and what we would actually read and use.  There is so much information out there and I don't have the physical time or emotional energy to read it all.  One step at a time.

Over the weekend, we spent lots of time in the car driving to and from the seminar each day and that wore on our energy quite a bit.  We were so thankful for friends to stay with and talk with in the evenings!  We enjoyed watching the World Cup final (well, I slept through the first half, but everyone else enjoyed watching) on Sunday afternoon before driving home that evening.  Buttercup was cheering for Germany because she wanted "white" to win, but the rest of us were hoping for Argentina to take the cup.  We got home late last night and the girls slept in but Buttercup woke up excited to be home.  Today is a day of rest and thankfully, everyone took naps this afternoon!

When our plans are different than His plans...

This week we are getting ready to attend the National Down's Syndrome Convention in Indianapolis.  We are very excited for the weekend away and are looking forward to all we will learn at the convention.  We will be staying with former dorm parents from Matt's Ecuador days and Tia Anita will be joining us to watch the girls while we are in the sessions.  We are thankful for the opportunity to attend this big event!  And, I have to admit, at times I am a little discouraged.  See, when we registered for this in May, we thought we'd be applying for the feeding clinic in June and in our hopes and belief that God could make this move quickly, we even thought we could possibly be at the clinic already by the time the convention came around.  And, we aren't.  I don't know why this timing is best, but I know that it is God's timing and I have to trust that.

We called the clinic for updates daily and today they hadn't yet received the necessary form from our doctor.  When they get that, they can submit the paperwork.  Evidently, because of the big storm we had here last week, causing some power outages, and the holiday weekend, the doctor's office didn't receive the fax until today.  Praying each piece gets resolved quickly so we can keep moving forward.

We also met with Sunshine's nutritionist today.  Sunshine hasn't been gaining weight, in fact she lost a little, since the last appointment, so we have added 150 calories to her daily intake!  That's a big increase, but it is what she needs to stay on the right growth track for now.  I'm sure part of it is because she is so active!

Sunshine's big "eating accomplishment" this past week!  She ate a whole vanilla pudding cup!  Yay!  (and the picture had to be totally posed.  She was not nearly as pleased/proud of this accomplishment as she looks)

Buttercup loved going on rides at the 4-H fair.  It's hard to take pictures of moving children though, so they had this stationary horse set up for picture taking.

Sunshine enjoyed the "play area" at the fair while Buttercup was going on rides.

One of the biggest attractions though was the "petting zoo"!  These are not your typical animals!

Sunshine loves Giraffes.  "raff... raff!"

And here are some pictures of our Fourth of July picnic and evening watching fireworks.

The fireworks show had her absolutely captivated!

Buttercup loved getting to do sparklers for the first time!

Beginning again

Today is July 1st (Happy Canada Day) and the day Sunshine's medicaid is supposed to automatically switch to traditional medicaid.  This morning Matt called to confirm the switch had taken place.  He has been assured by three people that her insurance has switched.  The only trouble right now is that the feeding clinic hasn't registered that switch--their information still has her listed under her previous insurance.  We are praying that their information gets updated soon and they are able to begin the application process again.  It is a multi-step process and each step has to be in the right order.  Our contact at the feeding clinic said there is another family in the exact same situation as us.  Please be praying for their application as well.  Maybe we'll be able to overlap time there and get to know them.

Update July 3:
We have heard that Sunshine's status has officially changed and the process is getting started.  They need a new order from her doctor to submit with the application.  That should get taken care of today.  Now we have a holiday weekend to postpone things a few more days enjoy!