Friday, December 19, 2014
Sunday, December 7, 2014
Sunday, November 30, 2014
Saturday, November 29, 2014
I'm going to try to do better about posting. Facebook, Instagram and Twitter have of course made the quick photo and comment easy. I have a Blogger app so I'm gonna try to share some here more often. For those of you who are blog followers. All 3 of you. :)
For starters, Braska's enjoying Saturday morning in her favorite spot on the couch. So nice to just be home... Hope you all had a nice holiday!
Tuesday, November 25, 2014
Just have to share this Kinlee moment….Our evening routine is referred to as "toilet, teeth, book, and bed." M covers most of the 1st three parts lately because I've been editing so often in the evening. But by request of the girls, I come in for prayers before they are tucked the last time. Kinlee has very recently started to begin praying before I start, which is so cool. My favorite line is usually when she says, “Please help my family to learn, grown, and strive.” :)
Two little things to note before I continue… Today the girls were with me for a studio photo shoot. I picked up some boxy letters, J, O, Y, to use for the Christmas portion of the shoot. Kinlee liked helping me with the letters. And earlier this morning, she asked if she could have a temporary tattoo on her upper arm. Someone gave it to her a while back. It says Peace. So she’s sporting that tonight also.
We've been talking about the things going on in Ferguson lately, because she can read the headlines and she is very keen to conversations that happen around her, even in public settings. And since we live about 15 minutes from there, it’s a topic everywhere. Tonight she began to pray, and after being thankful for things like her family and her house to keep her safe, she said, “Please be with the people in Ferguson. Help them have what we made with the letters and what’s on my tattoo… joy and peace.” I just had to stand there in the dark, holding the hands of my girls, and smile. Makes a mom proud. And I agree with her. Don’t even begin to think that anything gets by her. She is just so insightful……. Thank you, Lord. Amen.
Sunday, October 19, 2014
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.
Monday, October 6, 2014
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!
Tuesday, September 9, 2014
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!)
Friday, August 22, 2014
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.
Saturday, July 19, 2014
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
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
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.
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
"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.
Monday, June 30, 2014
While we were there, all of us in a room with the therapist, Kinlee wanted to answer questions and interject as part of the conversation. I asked her politely to please read her book and let me deal with Braska for right now. She started to argue, and I asked her again, a bit more intensely, to read her book. She asked to sit on my lap, and I said this wasn't a good time, that she needed to stay in her chair. She got very upset and pulled a bit of an attitude with me which brought a quiet but firm reprimand that made her cry a little to herself. I don't like that, but yet she's struggling with the fact that not everything is about her, so we're working through these moments. She recovered well, and when Braska and the therapist were out of the room for a moment, I explained to her again that this is a time when I need to be paying attention to what's happening with Braska and I need her to help me by doing what we've brought to occupy her quietly.
The rest of the visit was better, and Kinlee cooperated with the plan well. I tried to include her when I could--watching the biofeedback screen to see the smiley face frown or smile when Braska tightened or relaxed her muscles, etc--and she didn't interrupt again. She mentioned at one point before we left that she wanted me to take her to the bathroom. I asked if she needed to go or if she could wait til she got home. She said, "I don't need to go potty. I just want you to take me into the bathroom." I wasn't clear what that meant, and Braska was heading for the door, so we decided to head home and deal with whatever it was there.
When we got home a few minutes later, Kinlee said, "Remember, Mom, we're going to go into the bathroom." I went along with it, and once inside the house, she prompted me again. We went in, and I started to take Braska's padded ring off the toilet assuming she needed to use the bathroom, but Kinlee said, "I don't need to go, Mom. I just need to talk to you." She went to both doors in the bathroom and closed them both all the way. She came back and reached up, so I set her on the bathroom counter.
She began with, "I wanted to tell you that I felt very left out when we were at the therapy. When we go to Braska's therapy appointments, I feel sad that I can't do the things, too. Because you just pay attention to Braska there." She was speaking very calmly, sincerely, but not getting teary like she often does. She seemed so grown up. "I try to talk to them, too, so I don't feel embarrassed that I'm not getting therapy with Braska. And then when you told me to stay in my seat instead of sitting on your lap, I got embarrassed again."
I talked to her very calmly, telling her it was so nice that she was talking to me with calm words and explaining how she felt. That I was proud of her for doing that. We talked about how sometimes it is just necessary for me to be focused on Braska's needs. And she said she understood that Braska needs more help with things sometimes, so it's ok. I reminded her that there are lots of times when she and I do things together and Braska is not involved. She said she understood.
I gave her a big hug and said how proud I was again, that I liked her choice of talking to me like this instead of throwing a fit or being disrespectful with her tone and attitude--which is not uncommon and brings consequences each time. She smiled real big and hugged me a couple more times. "When Daddy gets home, we can tell him that I did a good thing and told you about my feelings and didn't whine about it, right? I think he'll be so proud of me, too." Of course, I assured her that was true.
Oh how I hope we can continue to utilize chats in the bathroom or wherever she chooses, to diffuse her strong emotions and reassure her of her valued place. It's odd to balance in my mind that a child so advanced in many ways, so intelligent beyond her years, is so aware of her feelings and can recognize insecurity. We are so proud of her for so many things, and she knows that, but everyone needs a little reassurance and reminder of their value.
She's 5 years old. Going on 15 some days. Lord, continue to equip me with what I need to be able to pass on to these precious girls.
Wednesday, January 22, 2014
Braska reporting: Yesterday Daddy stayed home from work because KiKi was sick and Mommy needed to get a lot of her job work done. Then my school decided it was a snow day, so I got to stay with them.
I like to hold Kinlee sometimes when she isn't feeling good or when she's sad. That's what good big sisters do. Even though she's bigger than I am now. So I gave her some cuddles for a while. I think it helped.
And then we both watched Daddy do some of his work on the computers. We are good helpers! It's a fun day when Daddy stays home.
Sent from the speedy and small Samsung Galaxy S III Mini.
Friday, January 17, 2014
Tuesday, January 14, 2014
After much resistance and hesitation, like years worth, I’ve joined Faceb**k. And maybe I’ll learn how to tie all this together or something… for a tech-ish girl, somethings still escape me….but in the meantime, if there is anyone out there still reading the blogs, here’s a clip for you. A peek into Braska’s after-school demeanor. Sassy with a touch of bossy. You’re welcome.
Saturday, January 11, 2014
Things have been overwhelming since the release of my DS Life design this week. We’ve gone global… well, I mean we have international orders… but still!
And by request also, we adapted the image for a rhinestone version for mosaic DS. Options!
The original rhinestone design is still the most popular so far. Orders have been coming in for 3 days now. People from 11 states have ordered so far! Wow!
Click HERE to go check out all the details or get yours! How fun will it be to see all these walking around in Indy this summer…that’s what I keep thinking!
Thursday, January 9, 2014
When I got up this morning, I found Braska sitting by the back door corner. (Three doors in not enough space.) It kind of acts as our mud room for drying snowy dog feet and leaving snowy people shoes. During wet or snowy times, it's not a place we sit or stay.
But Braska circumvented the hall gate (really only meant to slow her down and cause enough noise for me to hear the girls getting up) found flashcards she loves, and apparently decided a seat with a view to the snow falling in the back yard was her pick.
When she looked up to see me, the remorse was obvious. Or her nose was itchy. Judgement call.
Wednesday, January 8, 2014
Most of you know that I’ve been doing rhinestone and custom accessories and such for a little while. After just about bursting from excitement, I can finally release my newest original rhinestone design! Specifically for DS!!
**Perfect timing as we countdown to World Down Syndrome Day!
**Great gifts for teachers, therapists, family members, and friends! (And yourself!!!)
**Make sure you and your “posse” who are all meeting up in Indy this summer are decked out!
Details about how it works, what it benefits, and how you can get one –including PayPal checkout--are on this page...Just RK Designs.
Or you can find out about how to win a FREE one at the Just RK Designs Facebook page.
Share the word, spread the sparkle!!! Please link and repost!
(By the way… if you’re not into bling, I’m looking at doing this design in screen print. If that’s more your speed, let me know and we’ll make that happen!)