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.
Wednesday, August 20, 2014
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.
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.
Tuesday, August 19, 2014
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.
Monday, August 18, 2014
Braska slept well last night in our temporary hotel home. I slept ok. I am a very light sleeper, and there were some noises on and off in the hotel that kept me from getting long intervals of sleep. And Miss Grind-when-I-wake-for-awhile-at-night…. that’s always fun. There’s a reason why my kids don’t sleep in my room usually! Thankfully, it wasn’t as long as it sometimes can be. She was only awake for one little bout for maybe 15 minutes. My super duty sound machine along with the hotel a/c weren’t quite enough to get me a full night’s sleep. It was enough, though, so I’m thankful.
We got up and I worked while B watched some of her favorite PBS shows. We got things together and found our way to Lori’s office on time. Though it was a winding way to get there via GPS. Things are so different here. Norwalk isn’t a big city. It feels kind of small-town-ish, yet there’s an age to it, a history, which I’m sure is just part of being in this part of the country. But it feels strange to me. Can’t put my finger on it. And I’ve yet to see a subdivision, the lack of which I hear is part of the most endearing part of this area from family members who hail from nearby. It’s pretty, lots of trees, unique houses, and small little business. Even the chain businesses look more local. That part’s kind of cool. Things are just different, not in a bad way.
Lori took us back and started talking about what she saw right away. We’ve sent her videos and pictures, therapy background and medical history. And she has seen her once before, you might remember, in St. Louis for a workshop demo. Not the same kind of formal eval, but she had interaction with her and was really helpful back then.
I got video of most all of the interaction today, so we’ll be sharing that. I think our therapists will find it very interesting. I wish I could relay it all here too, but it’s so much to process. Here’s some bullets of the highlights…
•Braska’s core strength is a problem. With feeding, you ask?? Yep, it’s all related. It’s harder to eat when you’re slouched over, and it’s much harder work for a kid with sensory issues to focus on the task when the body is giving too much or needing more input. And because feeding is not pleasant for her, she chooses to avoid and let the sensory demands take over, when left to her own decisions. We believe that many of her sensory needs can be met with stronger core and more stability so she doesn’t need to compensate to feel secure.
•Because of the above, we got a new appointment added to our agenda tomorrow, aquatic physical therapy, combining the deep pressure aspects of the water while working on focused core exercises. Thankfully an expert was available on short notice. Lori texted, response was affirmative, appointment made.
•While we were there, she put B in a SPIO long-sleeve top. It’s kind of like heavy duty spandex to help with posture and pressure for sensory input. It was AMAZING to see the difference. I was shocked. She let us borrow it this afternoon, and I put it on her a couple times. It just helps her be more organized and supports her. She didn’t grind her teeth with it on either!!!! We’ll be looking to get that for sure… every girl needs a $130 shirt, right? oh well!
•Lori also believes that much of the in-the-mouth struggle with food is due to posterior ankyloglossia, or a kind of tongue tie issue to most of the general population. Braska is able to move the tip of her tongue around, but she had the center of her tongue kind of create a bowl when she does so because it’s not free to move as well. This creates a big problem with feeding as she cannot move the food safely through her mouth. This has not been something we’ve had mentioned before, but after reviewing all the info about it, it seems clear as day. I’m trying hard not to spend time in the “we could have done so much better so much earlier” world and focus on where we go from here. It’s not easy today to do that quite yet… I wish we’d helped her so much earlier.
•Because of the above, Lori texted again, to Dr. K, and ENT and a professor at Yale-New Haven, well versed in these things and with a working knowledge of the whole picture that B’s dealing with, sensory and physical. He “happens” to be doing procedure Wednesday on another little guy with DS that is part of his research for similar issues. He is in surgery all day tomorrow, but he has offered me his cell phone number to call in the morning and find out what time we should be there to see him between his cases tomorrow afternoon. Wow. Speechless. Add another appointment to tomorrow’s schedule, and that’s ok. (This one just MAY be covered by insurance, so yay!)
•The good news that after every time Lori mentioned a problem, and I asked each time, “But can we fix that? Can it be improved?” she said, “Of course!”
•She mentioned often how smart Braska was, how she had fooled lots of people into thinking she could do things because she fakes her way through, gets the end result but does it in a “wrong” way. The problem lies in that she can’t build on that foundation to progress because the underlying strength/skill isn’t there. Lori often says “Cognitive overrides motor” meaning that sometimes knowing how to work around something overrides learning it in the proper manner, which leads to long-term problems. Braska has spent her whole life working really hard at all things related to feeding… and she’s made us believe, in some ways, that she’s more skilled than she is.
•She noted also that Braska’s speech, though very good, still does have articulation indicators of physical/oral motor issues. I thought that was interesting. B hasn’t had specific articulation work in speech therapy for years, as far as goals go.
•Lori was very complimentary of B. She was impressed at how well she listened and though she was very quiet (typical in new settings) she was interactive and cooperative.
•I asked her about the self-feeding element. Braska does not feed herself unless prompted to do so, for just about every bite. She’ll occasionally take a few more on her own if it’s her favorite yogurt, but meals are always about 45 mins to 1 hr if we wait for her to do it… and that’s with almost constant prompting. Mentally exhausting and discouraging…3 times a day. That’s just being honest, folks. Lori said that right now, Braska works so hard to manage the smooth/blended foods she has in her mouth that it’s a very unpleasant experience. The trunk strength and motor planning come into play in working to get that spoon, full of stuff that likes to fall off, up and into her mouth. It’s a slow process. So she doesn’t want to do it. It’s a thing she really dislikes and is very hard for her, and she’s asked to do it 3 times a day. Makes sense. But she also acknowledged the element of familial background, with her dad not liking to eat in general either, he usually considers it a hassle. His having a very narrow list of acceptable foods and sensory issues of his own may be part of her similar issues in that she is his kid, and she has even more chromosomal (read: family material) than the average bear (child). Interesting stuff.
•Because of the above, she doesn’t think we should push self-feeding, and definitely not progress to any chewing until we get some of these underlying issues of sensory, strength, and the frenulum issue dealt with. That’s going to be interesting at school… as of now, they require her to feed herself all the time. We’ll have to think about that…………. Still not sure what the next few weeks will look like.
•After we finished at Lori’s, we came back to the hotel and had lunch. We rested a little (I worked, and she played) and then we went to Walmart for some things. I never would have believed that Walmart could have made me feel so relieved. It just felt familiar, and that was nice. I think I’ve lost some of my adventurous side as I’ve aged!
•We did go to the seaside, Braska’s one request. We didn’t stay long, maybe 5 mins, because we weren’t dressed for it (and I don’t like sand. at all.) and she was ready to go back and relax. Couldn’t blame her.
She has been SUCH a big girl, so cooperative. She’s been goofy and happy and so flexible with what’s happening. I’m amazed at her all over again. We skyped with Daddy and Kinlee tonight, and she just kept on being silly and playing with her sis. As soon as it was over, she wanted to call again.
We’ve got a precious gem, one that needs a bit more polish than some, and I’m trying my best to get her to only the best jewelers to help us with that work.
Thank you for your prayers, encouragement, and support….. tomorrow is another day!
Sunday, August 17, 2014
If you’re on FB, you saw little snippets through the day. Braska did SO well. She just seemed mostly unfazed by the chaos, LONG waits due to the delayed flight, and the supremely stressful (for Mommy) drive out of NYC. She didn’t eat anything from 10 til almost 7pm, and she didn’t complain. She drank her milk and went on being sweet. She LOVED flying, no doubt.
The plan had been to give a bit more detail about the day, but I’m tired, so it’ll wait.
I’m dealing with a little culture shock in our short time here on the east coast. I’m hoping some sleep and acceptance of a different perspective of those who are used to life away from the middle of the country will bring a more peaceful tomorrow.
Tonight I’m most thankful that we had a good flight and she did well with all the transitions. After a little netflix and yogurt by request, she chose her bed to be in the closet. So I asked the hotel for a couple comforters, and made it up for her. She jumped in her excited way and said, “I love this place!” and went to sleep in just a few minutes.
Monday, August 11, 2014
We leave on Sunday. M and Kinlee will drop us off at the airport and Braska and I will try to navigate ourselves and baggage through to NYC and then out of there to CT via car. Right now, I’m finding myself scared. Nervous. Having quite a bit of anxiety about it all. So I’m refocusing on the blessing side….and our biggest blessings have been people!
A BIG “thank you!” is due to so many of you. And I hope I’ve told you repeatedly….
•We have received our plane tickets and rental car via a dear friend from years back who has never even met Braska but felt led to reach out in this way. THANK YOU!
•I have been working more hours and my friends have been clocking LOTS of child care time to let me earn a little more to help with expenses. THANK YOU!
•My photography business has been busier (Larae Photography, LLC) and that also helps our “trip fund” immensely! To all who have booked so far… THANK YOU! (There are fall slots available, so if you’re considering family photos, birthday photos, or Christmas cards, I’d love to get you on the schedule for September or October!)
•Lovely friends who I only know via blogs/Facebook/online forums have shared with us both in sweet encouragement and in their financial generosity. Dear friends that we don’t see NEARLY as often as we’d like have also shared so generously. It’s been amazing! THANK YOU!
•We’ve had people mention that they were gathering gift cards for our food expenses for the trip. There have been offers of helping with meals while we’re gone and M and Kinlee are here. There have been SO many praying (and I need that so much right now!) For ALL of that… THANK YOU!
I’m surprised at how I’ve begun to get emotional about the trip. I’m surprised that I’m so anxious. And yet, I’m not. I have a great fear of failure… tendencies of perfectionism that leave me frozen with inability to act when I know I can’t do it just the way I want to do it. So I either do things really well or I don’t do them at all… and it’s a problem in much of my life. And with Braska, I can’t MAKE her do anything. I can’t reason with her. I can’t teach her the way I feel like I should be able to. So I’m scared that we’re going to go through all this and I won’t be able to carry it out. That it won’t bring success in the coming months. And that’s terrifying to me.
So thank you for all your encouragement. With all the horrible things happening in the world and so many dealing with more treacherous situations, it seems petty to be worried about something like this. And yet, it’s our life. Every day. Every meal. My daughter can’t chew. She can’t deal with a meal on her own. And I want her to have that independence if it’s at all possible.