Saturday, July 19, 2014

Prep for CT trip: Hope and Fear

I just keep telling myself I’ll sit down and kind of document how we got here, details of the hopes I have, trip plans, and all of that. But quite honestly, that is not likely to happen in any smooth narrative manner soon. So the oft-used bullet list will have to do.  (If you want to see back story on feeding, I’ve added the posts from Braska’s previous blog related to feeding, so scroll down to the label cloud and click on “feeding” if you’re curious.

•The dates for the trip: We (Braska and I) fly out on Sunday Aug 17 and return to StL on Thursday afternoon Aug 21.  We will fly into LaGuardia and drive to Norwalk, CT. That should be fun. NYC.

•Braska will have an evaluation with Lori Overland on 8/18, then treatments the next two days. The goal is to develop a plan specifically for Braska’s skills and needs and then be ready to bring it back to our therapists here. We’ll be getting video of all the treatment time to bring back with us. (Note to self…need to borrow a small digital video camera.)

•This is not an intensive treatment situation. Some facilities do a day program, many days in a row with treatment most of the day. This is not that. This is creating a plan for success that we and B’s therapists can continue.  We will also do any needed follow-up with a colleague of Lori’s in Indianapolis. I plan to do some occasional checking in there to make sure we stay right on track and do not mess up the process at all.

•Crunching the numbers:  This is not something that is covered by insurance, so it’s going to be paid for with actual dollars.  Total cost of all elements would be a month’s income for us.  It is not as expensive as the day program/intensives that are out there, but as mentioned, apples to oranges, those two.  Straight up--The therapy itself is $1150 for the 3 days.  We are SO SO blessed to have had a wonderful friend purchase our tickets AND rental car with airline miles and points.  This is still just amazing to me, that the huge chunk that is that expense is now covered! We are very humbled and beyond appreciative for this generosity!

•What’s left? Clearly, the cost of the therapy is being dealt with. We are looking to rearrange and make it happen. It will happen. But as we choose to live without debt, and the therapy clinic doesn’t take credit cards, this is a cash transaction. We are still arranging for the hotel stay which we expect to be about $580-600, possibly a little more, and trying to budget for the food we’ll need while we’re there, as well.  If we can make it work to get a hotel with a kitchenette at least, we will plan to just shop when we’re there and make food at the hotel to save, of course.

•How to help….  Please pray. Pray that we have safety and that the whole trip goes very smoothly. That’s primary.  Pray for our preparations and my sanity as I try to wrap my head around the whole thing. (See the next bullet for more on that.) For those who have asked specifically how you can help, offsetting hotel costs (anyone got points on a credit card or hotel rewards card??), or food costs is the main thing now. Obviously, the therapy costs a lot, but it’s a priority for us to make this happen for our girl. If you feel like you want to help, it will be most appreciated!  But this is NOT an attempt to garner that kind of support unless you have had that leading outside of our mentioning it.  Braska does have a special needs trust started that can accept any donations that are sent, being used only for her specific care. Details are available if you message or email me… braskasmom at gmaildot com.

•Hope & Fear: I’m struggling to consider all the parts of this process.  I’m overwhelmed by the to-do list as well as so amazed at the wonderful response we had at simply sharing with people that the trip was happening.  I’m excited to go, and I’m scared to go.  I’m afraid I’ll be faced with all that I should have been doing for the past few years. I’m worried about the pressure of bringing back this plan—having spent all this money to go—and not being able to carry it out for her. Dropping the ball. I have hope for the first time in a LONG time that Braska might actually some day learn to chew. That she might eat a meal of more than blended soup and yogurt, that she might feed herself, and that she might chew a french fry, like kids should on special playdate trips to McD’s.  I’m almost afraid to hope though. Wow, I’m apparently more afraid than I even thought, judging from my welling eyes as I type.  I want her to have this chance. And I want her to succeed!   Yet I admit to doubts that it’s even possible.  Yet ALL things are possible when God is involved, and I have no doubt that the crazy way this has all played out is no accident, no coincidence. He’s all about my girl, as he created her perfectly. So I’m going to do my best to focus on the hope, not on the fear.

Thanks for caring enough to read that whole long random mess! Here’s to success!

Tuesday, July 15, 2014

Next chapter in the feeding therapy journey

I will delve into this much more, but for now, the bottom line is this.

Braska and I will be heading to Norwalk, CT in just under 5 weeks to have an evaluation and treatment visits with the best of the best for this kind of issue. I’ll talk more later about how we got here and why we’re going there.

For now, here’s the video that I made by the request of the therapist to get an idea of where she is now. It’s a small peek into how mealtimes go… on a good day.

Saturday, July 5, 2014

Independence Day 2014

We had a very lovely day yesterday at the home of a dear GENEROUS friend.  We’ve celebrated many holidays and special events at her home, and we often joke that she lives in our vacation home. But we do not take for granted how blessed we are to have friends like Miss C!

For about 6 years, we’ve been taking pictures of the girls by the waterfall next to the pool.  Here are this year’s results.



This was 7-04-2011 at the same place. They would have been 2 and 4.

After pictures, it was time to swim!  Hello Kitty was the theme of the day apparently.

Always the popular one, Cousin McKayla obliged both girls with some cuddle time.



Braska LOVED some sparkler time… Kinlee, not so much.

We finished up the day with Daddy and B enjoying the evening at home with early bed, and Kinlee and Mommy went to watch the StC fireworks from a pleasant, low-traffic distance. 

Thankfully, the girls slept well in spite of the neighborhood of crazy loud home displays.  The parents didn’t fare so well….  Overall, a really nice day!

Wednesday, July 2, 2014

Braska's Favorite Sister

Last night, I hung out for a while in bed with Braska as we were waiting for Daddy and Kinlee to be done with the bedtime routine.  We shared the pillow and were being silly and giggled alot.  I started asking her questions as we chatted.

"What's your favorite color?"
"What's your favorite..... shape?"
She laughed, "Shape??" Pause. "Square!"
"Ok, what's your favorite animal?"
"Nice, he's so tall, isn't he!"
"Yes, he's REALLY tall!"
"What's your favorite...hmm... sister?"
"Sister, um.... Della!"
"You like Della better than your sister?"
Laughing again, "YES!"

So there you go. A baby cousin makes a better sister than a little sister.
It could change tomorrow. Stay tuned.