Wednesday, August 20, 2014

CT trip, day 4: Brain fatigue sets in

I keep thinking about what to type, and I just can’t think straight enough to make it work in my head. So I’ll just do it instead of thinking about it and see if it makes any sense… Braska even laughed at me some tonight, “Mom, you sound like craziness.”

We met with Lori twice today, this morning for another regular therapy session, where she was working B’s new plan with her, then again this afternoon when Lori would show me  and then I would do it in order to make sure my placement and pressure and support for the jaw and all of that was right.  It was intimidating, let me say.  But I think I got a good grade.  Then we talked a bit so I could ask questions, clarify some things, and make sure I understood how the next steps will go.

I am SO thankful that I’ve been able to get all this on video. So thankful that Lori lets that be a part of her process.  (For those that aren’t familiar with therapy situations, some therapists are ok with it, many are not.) 

We go home with a plan, certain assignments, like scheduling the correction of the posterior ankyloglossia and finding quality aquatic PT for Braska.  We have a prioritized list of things that she needs help with, and the tethered tongue and core strength/sensory issues are at the top.  Once those are addressed in the next couple weeks, we will have a Skype visit with Lori. We’ll be sharing videos regularly so she can make sure I’m not doing something wrong. [My biggest fear…I think this has been mentioned before.]  We have about 12-15 tools that need to be found online, most likely, and purchased to use with the new oral exercise plans.


Here’s the best part, though… Braska has been amazing. She tolerating EVERYTHING so well.  She has really had a fun week.  And she DID show progress with her mouth even in these 4 visits.  Oh, if you could only know how much I wish we could just magically stay for 4 weeks with sessions every day.  But we will go home and do our very best.  M will be watching all the video with me as I review it again. The therapist will have portions to watch also (unless they want to see it all), and we’ll be making it a priority.  Lori also says, though, that there’s therapy, and there’s life.  And she’s right in that therapy can’t always be the center of the world. BUT for a little while, it’s going to be a very high priority.  I asked Lori to give me “this is ideal” and “this is acceptable” for frequency and environment,etc.  Initially, I’ll be doing my best to fit the “ideal” option.

It looks like Braska will not have to miss as much school as I’d thought might be possible.  She will go back next week probably for 2-3 days late in the week.  Then we see the ENT and hopefully schedule her ankyloglossia release. That’s a very simple procedure, so I don’t think it’ll cause much trouble. There will be a period though where I’m likely going to be going to her school for lunch each day to work with her.

Lori is pretty adamant that right now only M or I, or a select few who will be trained only if necessary, will be working with her on the “feeding” section of the plan.  The “prefeeding” exercises can be taught to therapists if we need.  It’s not an elitist kind of thing, but because Braska is a champion avoider and distraction-causer and loves to charm her way out of work, we’re going to keep the circle small while we’re establishing routines.

Most of her day will look the same as usual, with a time carved out for some work before each meal.  We’ll be adjusting her current private therapy schedules for a while as we figure out how to fit things in.

Lastly for now, Lori mentioned that she wants to see B again periodically. Which is great, but we live far away.  So we’re going to keep an eye on her schedule for speaking, workshops, etc, and when possible will meet up with her somewhere nearer home. 

Things to pray about, if you’d like to join us…
•Mental stamina as I try to make all this fit and as I need to change up how my time is allotted each day. 

•I am not, by nature, patient. At all. This will require a great deal of patience.

•We will be looking at funding options for the additional costs that are inevitably part of this.  We will also have to reprioritize in that department at home.  We have a financial philosophy of having no debt and saving for the future…so we live below our means.  And our means are, well, not that high.  We don’t have car payments, because we drive old cars we can buy with cash. We don’t have cable or satellite TV. We’ll be looking for more income, basically, so pray that we can have the opportunities to provide what BOTH our girls need.  We don’t mind hard work. :)

•I want to remember that Kinlee didn’t choose this situation.  She’s a great sister, but as we focus on Braska so much, I want to be sure we balance our time and attention. Kinlee’s not suffering, don’t misunderstand. She is all kinds of blessed.  But it’s something I want to keep in the front of my mind.

•And of course, I just want B to succeed in this.  To become independent in her feeding. To be able to get stronger in order to benefit so many parts of her life…one of the amazing parts of this week has been hearing how so many of her struggles are tied together. Related by their source. I think low tone (hypotonia) is kind of dismissed as just a part of DS for so many, but it’s interrupting basic life functions in Braska’s case, and I want to help her in any way I can.

Tomorrow we leave bright and early to head into New York City during rush hour.  We are scheduled to take off at noon eastern time.  I’m ready to be home.   Yet I know it’s not like I can go home and chill for 5 days straight like I kind of feel like doing.  We’re all packed up, and Braska’s asleep in her little closet “bedroom” she’s loved. I’m gonna retire early tonight as well. It’s been a very full few days.

Who knew when we came that there would be SO much to deal with before we ever get to the chewing….  amazing…   But think of the story that we can tell someday soon. How far she will have come by that point. I hope, I hope, I hope.

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