Fall fun

I had a big word-filled post started. But it was heavier and more unhappy than I’d intended when I began. Things are not bad, just frustrating on several levels lately.  So for now, let’s just enjoy some funny photos of Braska and M playing “rake tag” (invented by the girls, they are chased by flying leaves, basically) in the backyard last night.  Don’t worry, Braska was having a blast, though she looks less happy in a couple shots.  They make me laugh, though.

In Braska news…. We were blessed to qualify for another grant situation that is allowing us to get the special feeding chair that was recommended for her. It should be delivered this week.  We received another SPIO compression shirt from the same organization.  We will likely be returning to Connecticut in early 2015 for a stay of a couple of weeks, and then possibly staying for up to a few months after, depending on outcomes after the 2-week intensive.  We’re praying that the best things come to be.  She’s not making much progress currently, but that’s largely because of the pace we have at home, and how little time I have to spend working with her.  I’m trying to reorganize and cut back…again… I appreciate your prayers of wisdom as we make some of these tough choices. 

The good news is that her reports at school regarding behaviors are better.  She has finally been showing them her funny, talkative, sweet self.  At least occasionally.  She had a great visit to the dentist, tolerating a cleaning (sitting up) and even attempting x-rays, though they didn’t turn out usable.  That’s a big improvement, though.

Thanks for being interested enough to keep checking in.

Overdue update

This was a post to facebook, and I apologize that I haven’t kept up well. I summarized last week by telling someone , “I’m drowning in life right now.”  I’ve not been feeling well, and I think it’s just the overwhelmed state of my schedule with three jobs and the kids and volunteering.  I need to reorganize once again….thanks for your prayers and your patience.

Several have asked for an update on things...just all the many things going on with us. I'll try to be brief. (yeah, I saw that chuckle...don't laugh.)

•Braska's school reports have been increasingly disappointing, and we're having trouble determining what the source is.  She's showing behaviors that have not been part of her norm. We're not sure where they're coming from. But we believe much of it  is sensory related, according to the pros we talk with and the team in CT. We're thankful to still have access to Lori up there to coordinate.
•In the midst of the frustration of her school situation, we're encouraged by many things that she's doing SO well, so we're celebrating those.  Things like much-improved sentence structure, appropriate expression of her feelings, and increasing independence in some self-care elements.
•We've arranged for a new aquatic PT situation weekly that looks very promising for B. We're excited (she is especially. she loves "pool therapy.")
•We hope to start sensory-focused OT this week as well.  Her sensory struggles are currently causing her the most problems. So we need to get her some help and ways for us to help her get what she needs, regarding input. (may sound like gibberish if you're unfamiliar with sensory issues. sorry)
•M's car, that has been parked for a while after we found that it needed $1000 in repair was taken to a place on Saturday where we got a less expensive quote, and we were hopeful....unfortunately this morning, we have been told that there's another issue that was missed before, so now it would be $1900 to repair.  Not gonna happen.  We'll be figuring out how to get something soon.
•We've been driving my parents' extra van. Thankful we have that option. But it has another home to get to soon, so we'll be looking for something else.
•We have some big decisions to make about school, our jobs, how to reorient things to be available for what might be some big changes on the horizon if we can't seem to get the help we need for B here. (possible return to CT for an extended period is on the table). We appreciate your continued prayers as we seek to make the right choices for our family.
THANK YOU for being part of our team of encouragers!

Praise and thanks!!!

Celebrating good news! I just got word that a grant that I applied for to help with the therapy evaluation costs in CT came through approved! They're going to reimburse us most of the costs of the therapy sessions with Lori!!!!! Huge thanks to Tricia Theis Rogalski for the tip for UHCCF! You're the best! And praising God once again for provision for our family! Those funds will be directed right back into her upcoming therapies. SO many have shared and been so generous, SO many are donating to the yard sale that's gonna be a "mega" version of the usual. We are blessed. Humbled. Amazed. WOW!

(Non-fb friends, this was a status I posted earlier this afternoon.  The yard sale I refer to is soon to be set on a date, but we have lots of donations that will be sold.  If you want to clean out, feel free to let me know and we’ll come get stuff. Well, for the locals anyway. ha!)

Here. Processing

Just thought I’d say we are home safely, I’ve got a lot to do in terms of appointments to make and paperwork to complete, supplies to order, etc. I’ll do a proper update soon.

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.

CT Trip, day 4: Morning news

Just a quick one here, so I don’t forget. 

I got a call back from Dr. M’s nurse at SLCH, and it looks favorable that he would be willing to do the release procedure for B. She’s checking with him, and we have an appointment next week to discuss it with him.  But it looks like it might be doable. That’s good.

I also got a call back from the local organization who does aquatic therapy.  Not as favorable.  I’m kind of bummed about that, but determined to find something.  So we’ll keep searching.  It’s not out of the question with them. It’s just looking improbable that the pieces will fit.

Beyond that, I’m contacting organizations who offer grants, therapy assistance for special circumstances, etc.  Hopeful that we can come up with a combination that works for B’s benefit.

Now, off to Lori’s for visit 3 of 4. 

CT trip, day 3: Three is alot

Talk about a lot of info. I thought yesterday was bad (in a good way!).

This morning Lori moved up our appointment and came in early so that we could go to see Liz for aquatic PT afterward.  B had a good session with Lori, though she was a bit more fidgety because we didn’t have the time to get her as “prepped” with the sensory and active/motor things prior to starting the “work.”  But she did really well.  We did several video clips of her session specifically so that Lori can use them in her upcoming presentation, too!

Her plan is a little different than we expected going in since there was more background work that needs to be done than Lori initially thought would be the case. I’d sent videos and lots of info before we got here, but the sensory issues weren’t clear on those particular clips, as well as her posture/alignment issues with the core strength.  So we kind of had to back up and start closer to the beginning than we’d thought. That’s ok, and it’s good that we now know, but it’s also a little hard to consider how much we need to do.

She asked if we could add another visit in tomorrow afternoon, since we don’t fly out til Thursday morning, and I agreed, of course.  With all these additional appointments, M and I just have taken the “get what we can while we’re here” approach, and we’ll move money around or work extra to pay for it.  No other choice with that really.  She’s worth it, but it’s reality that these things cost money.  So we’ll see her at 11a and at 3p tomorrow, with the 3pm being the session where I’m doing the plan with B and Lori’s making sure I have it all down. No pressure.

After Lori’s, we hit the hotel to grab B’s swim stuff on the way to another hotel where the therapist does her sessions in the pool. Liz was awesome.  She worked B HARD!  Again, I got video of most all of the session, and she explained so much.  I’m thankful for the video because there’s no WAY I would remember all this otherwise… that’s why I’m documenting here, too.

We raced out of there, back to the hotel for a quick lunch, then north to New Haven via Hwy 15, a lovely scenic little road.  I’m still fascinated by the different road/highway patterns, but it was very pretty.  We had a heck of a time finding Yale-New Haven Children’s but managed to get there eventually.  If you StL peeps think downtown is frustrating with the one-way streets and congestion, it’s never bothered me much, but it’s gonna look like cake to me after all this.  StL feels SO spread out after being up here. 

Dr. K was AMAZING!  He saw us just on the side, between his procedures in the surgery center.  He looked at the video that Lori had me take specifically for him, to show him the well in Braska’s tongue and how her movement is inhibited.  He agreed that she would benefit from a release, and he said he could do it… next week.  When we’re not scheduled to be here. He’s out of town the rest of this week to take his kid to college, so no options there.  I called my ENT as soon as I left to make an appointment to talk to him about it, then after some conversation and consideration, I called back to see if I could get an idea of if this is something he’d consider doing.  Many won’t do it, Dr. K says. Many ENTs don’t see the purpose or consider it necessary. So I’m hoping to hear back from Dr. M at StL Children’s tomorrow to see if he’s at least open to evaluating her and talking with Dr. K.  If he’s not, we’ll be looking for an ENT who will.  Can’t imagine flying back out here to do it is feasible, though Dr. K is totally willing.  Can’t tell you how cool he was. Just super.

Once we were done there, we headed home. We were tired, both of us. And the rest of the day was relaxing, doing a little laundry, having dinner, a couple sessions of Skype with home crew, and some work catching up for me.  Braska enjoyed Frozen while building with some blocks and dancing in front of the mirrored closet doors. Happy girl.

Here’s the clinical take-aways from today…

•Confirmation of the posterior ankyloglossia. Her frenulum that hold the tongue to the bottom of the mouth is too short, according to Dr. K.  It’s not too far forward toward the tip of her tongue, but because it’s so short, it doesn’t allow any movement.  (Kind of like look in the mirror and move your tongue around, but imagine the center about an inch to two behind the tip doesn’t move. Difficult to work food in the mouth.)

•Confirmation of kyphosis (curvature of the upper spine, not side to side, more like permanent slouching) but learned that it’s flexible, meaning that with work it can be corrected.  Stretches, focused exercises, etc.  Lori’s husband is immediate past president of the American Chiropractic Association, so he’s going to give some resources there as well for monitoring it.  (Connections galore!)

•The aquatic therapy session was FULL of info, beyond what I even can remember, but I”ve been looking back over video. There are head/neck reflexes that aren’t developed as they should have been (relating to vision and depth-perception issues… interesting as B has big vision issues too), her hip flexors are working to compensate for what her abs can’t do.  Her core is just plain weak. Big time.  She is once again discussed as one of the lowest-tone (that is motor-able, walking, etc) that’s been seen.  Tone can’t be changed. But strength can be increased to help offset the struggles related to tone.  I’m not clinical, but it makes sense to the pros.  We got lots of video examples of exercises to do in the pool, and we’ll be looking into aquatic therapy at home. It is available, possibly.  Liz said she was “the perfect candidate” for aquatic therapy because of her unique combination of sensory and motor weakness issues.  And B loved it. Worked like a champ to the point of exhaustion, smiling the whole time.

It’s just beyond amazing that we came here looking to solve the chewing mystery, and we have, kind of, but in the manner of finding several other things to address…  bittersweet.

I’m sure there’s more. But I’m really very tired and will opt for sleep now.  My apologies for any grammatical errors.

I can’t thank you enough for the calls, texts, messages, and all of you who are helping with various things.  Pardon me if I get back to town, though, and melt into mush for a few days while I process.