A last month we were at Shriners and they suggested we go see someone in that area that helps with breathing exercises. We looked into it but this person had a long wait list and you had to pay out of pocket as they don't take insurance. We also discussed it with our therapy team and several people on our team have taken classes from this person and they felt like this person wouldn't be a good fit for Jilli. However because multiple people on our team have taken classes from this person they decided that we could implement some of her ideas into therapy.
Around the same time Lydia's speech path had come to me and asked if I was ok with them re-evaluating Jilli for speech. She said in watching Jilli around therapy that she was noticing how hard it was for others to understand her. Those of us who are with her all of the time understand her pretty well so I was not noticing it as much however as someone who didn't know Jilli well she was seeing it. We agreed to a speech eval and scheduled it for yesterday because Jilli was discharged from OT last week so she had an open slot during the time we are there for therapy.
Lydia's speech path was there (who will be doing Jilli's therapy too) and another therapist came in too to help with the eval... a speech path and works with kids on the breathing aspect of speech. I am so thankful that they brought this second person in for another set of eyes and helpful ideas.
What yesterday showed is that Jilli's rib cage does not move when she talks and her diaphragm moves very limitedly... she is making her speech sounds with whatever air she can get into her throat. I mentioned at the end that Jilli's chest x-rays show that her lungs don't open all the way and that is isn't uncommon for little parts of her lungs to be collapsed. They said after the speech eval that doesn't surprise them at all. If Jilli is trying to blow a whistle or bubbles she retracts significantly.
The other thing they noticed was how hard Jilli is working to compensate for the lack of lung movement. They said that her core while it is floppy, she is holding it in specific ways to make it easier to breathe. She would get vary irritated when they tried to break her set ways because it make it harder for her to breathe. They noticed how hard her body is working at posture just to keep her lungs open that it is effecting everything else she does. They said that her tongue coming out while she is concentrating is a way she is trying to stabilize her core. They said she is really smart in figuring out ways to compensate and her body has figured out many ways however they are not all ways that benefit everything that she does. They said many kids just wouldn't try so hard to compensate but she works hard at it all day every day. They said it is taking more work to keep her lungs open then we thought and that if she had not been compensating that we would be in even bigger trouble however her compensation is effecting how much she is able to use her brain for other things and it is largely effecting her speech.
So Jilli starts weekly speech next week. They also gave us some tips. When Jilli need to concentrate and work she needs to have her body supported. They were so happy to hear that we have the Special Tomato seat at home to help her with school times. As much as she wants to do everything all by herself we are learning that she needs more support because it is taking too much out of her body to compensate. We are trying to talk to her more about how cool her purple chair is. Also if she is in public and she needs to use her brain that she should be in her wheelchair so it can best support her body. She thinks she can just compensate but it is really taking more of a hit to her body.
Its hard because we thought we were working some to build core but once we had someone look at it from a lung standpoint we realized how this is effecting her cognitively because too much work is going into her holding her body just so. So when she is playing in her play area she can sit on her wobble stool to help with building some core, but otherwise she needs to be more supported. It feels like a step backwards however in reality it is not, this will free her brain up to be able to learn more. Its also a good idea of how much her lungs are actually struggling every day... while her compensating skills are working for now her body will only be able to do that for so long.
We are also going to start her on the journey to find the right augmented communication device for her. When she has her crashes she looses the ability to talk but also later in the day it can be hard for her to talk once her muscles are too tired so this will hopefully help.
The Briggs and Al's run and walk is ONE MONTH away!!! Time is flying!!!
We are still looking for at least 17 more people to join our team to either walk, run or virtually participate on September 15th. To participate on our team you must sign up by August 30th.
We have currently raised 15% of our goal of $3,000. We participate in this event as a way to give back to a place that gives so much to us. Money raised during this event goes to supporting the special needs program, expressive therapies and the big research project that genetics is currently doing about our girls. All of those are things that insurance does not pay for.... so here is a time as a community we are able to step up and help fund those things. I am not sure why but fundraising this year has been a lot harder then it has been in past years but we are hopeful that this next month that people will donate. CLICK HERE to join Team Jilli and Lydia.
Part of my assumption with the harder time with donations is Facebook. I have had several people say lately that they are not seeing when I post blog posts or anything about the run/walk and that lines up with donations and page views. If you want to be notified of every time I post an update about the girls there is a couple of different ways to be notified about a new post... either by becoming a blog follower or by getting an email letting you know there is a new post... I believe to sign up you must be on the desktop view of the blog. Sadly I have no control over Facebook algorithms however if you are wanting to see all of the posts that is a way to work around Facebook.
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