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!

There is a time for everything...

As I re-launch this blog, we are in a period of waiting.  I feel like we are waiting on so many things and they all seem contingent on each other.  We are waiting to get to Spain.  This is the biggest one as we've been "waiting" for this for over three years.  We are anxiously waiting to get Sunshine into a feeding clinic (more details on that below).  We are waiting to pack up our house, but don't want to do that completely until we know when we'll be going to the feeding clinic.  We are waiting to move to Colorado Springs to live with my parents, but also don't know when that will happen until we know when we get into the feeding clinic.

In case you didn't notice, a lot is depending on when we get approval for Sunshine to go to the "feeding clinic".  We applied for the feeding program at St. Mary's Center for Children in Evansville, Indiana back in November.  We were then scheduled for an evaluation, which took place in February.  At the evaluation, we were advised that the 2 month intensive program would be the best thing for Sunshine to develop the necessary skills and increase the volume she is able to take by mouth.  The application process for insurance approval then began.  Over the next few months, there were uncountable bumps in the approval process.  Since the insurance specialists at the clinic were working on this, we didn't even know all the difficulties that were coming up. All we knew was that it wasn't going well.  Then we got a letter informing us that Sunshine's type of Medicaid would be automatically switched on June 1.  When we told the clinic this, they said that was the best news they had gotten all week.  Whatever issues had come up would not have been able to be resolved before June 1 anyway.  So, we anxiously waited for June to come so we could begin the application process again.  The first week of June arrived, only to find out that the automatic switch did not take place.  More waiting.  We were then told the switch wouldn't officially take place until July 1, but we could request it be processed sooner and be backdated to June 1.  After waiting the necessary two weeks, we called again.  This time we were told the request hadn't been processed and by now it is almost July anyway so why not just let it go and have the insurance switch on July 1st.  So, for this week, that means more waiting.

We are ready.  We are ready to pack up and move down to Evansville for 2 months.  We are ready for Sunshine to learn to eat!  We are ready to feel like we're moving forward in big ways.

But, there is purpose in this timing.  I'm sure of that.  Sunshine has progressed so far in these months of waiting.  Back in November when we started the application and in February when we did the evaluation in Evansville, she was constantly vomiting her Pediasure.  No matter how we set the pump she vomited frequently.  Some days and weeks were better than others, but honestly, any amount of projectile vomiting is too much.  She was also eating or attempting to eat very little.  We could occasionally get her to eat a few bites of thick purees, or she would munch on a few cheerios, but only a few and then she'd be done. 

Two months ago we were re-introduced to the idea of trying her on a "Blended Diet"--giving her real food through her G-tube.  We collected info from her nutritionist and were waiting on delivery of our Blendtec blender, and I decided to try giving her a couple ounces of babyfood peas mixed in with her Pediasure.  Miracle of miracles, she didn't throw up.  She has not vomited once since we started giving her real food, even mixed with the Pediasure, through her tube.  We are going on two months of no vomiting and in this house and that is a miracle.  Since making the switch to BD (Blended Diet), Sunshine has also been interested in and able to eat a lot more than she was.  I can hand her a toddler cup of cheerios and if she's hungry, she will eat half of it without any trouble!  Today with her Speech Therapist Sunshine ate seven different foods all with different textures.  Some of them were only a bite or sip, but others she came back to over and over again, taking 5-10 bites of them.  We were amazed.  She always does best when her therapist is here, but I think of it as seeing what she is capable of doing and then I try to encourage that throughout the week, introducing new things and continuing to work on what she already likes.  (This girl eats lots of cheerios!)

So, I know we're waiting.  And waiting is so hard.  But I can also see that God's timing hasn't come yet.  We were not ready to go to the feeding clinic in November, or even February, or even June for that matter.  I am sure they would have been able to help in amazing ways, but now, since Sunshine has progressed so far since then, I feel she is at the brink of taking off with these skills and the intensive therapy situation would be so good for her.  She is ready to be there.  We are ready to go.

Sunshine having FUN with food!  Yay!  And, by the way, a lot of that pudding did end up in her mouth.