30/03/2025
Linda Aaron Update - 3/29/2025
It’s been a busy and encouraging week for Linda, and I’m excited to be able to send this update. It’s going to be a long one, so grab a cup of coffee and settle in for a good read.
There have been successes which we are very grateful for. And there are still lots of challenges, but we are believing for a full recovery. We’ve realized that this is likely going to be a long, slow journey. Being patient with the difficulties that Linda is living with is probably the biggest challenge. Prayers have already been answered numerous times, the biggest being Linda is alive, at home and making little jumps in progress on a regular basis.
We have faith that they will continue to be answered. It’s humbling and inspiring to know that so many have been supporting Linda and our entire family through this.
Linda enjoys doing video chats and would love to do a video chat with you. While she can’t talk well enough to communicate effectively, she can see and hear you and write her responses on her white board. Her eyesight is effected by all of this, and reading texts and typing answers back on her phone is very difficult still.
Here are the some of the successes and challenges that we’ve had since the last update:
SUCCESS: After being referred to an ENT who did not want our case, as he’d not dealt with a tracheostomy case for fifteen years, we finally found an ENT that is very knowledgeable, experienced and helpful. He got us many of the supplies we were in need of and gave us probably the most helpful explanation of what is going on with Linda.
SUCCESS: He questioned the diagnosis of Tapia’s syndrome and suggested that that the damage to Linda’s nerves were because of severe hypoprofusion and sepsis caused by the infection in the abscess that was in Linda’s throat. This aligns well with the description of the infection given by the surgeon who drained it. Most likely, the nerves were paralyzed and damaged by the infection, which is why Linda’s paralysis is global rather than localized (as might be the case with Tapia’s syndrome). The good news is, he thinks these nerves have a good chance of regrowing and functioning again in time.
SUCCESS: Our new ENT also finally got us referred to a Neurologist and a Physical Therapy department that specializes in stroke recovery. While Linda did not have a stroke, the symptoms she is dealing with, and the challenges facing her, are similar.
SUCCESS: Linda finally got the very necessary Swallow Study. It revealed some very encouraging stuff: 1) her soft pallet is now moving nicely; it was not moving at all when we left the hospital; 2) her epiglottis (the flap which protects the windpipe when you swallow) is moving nicely. It’s a little slow and weak, but that can be worked on; 3) the back of her tongue is lifting to the roof of her mouth when she swallows (which was not the case when we left the hospital); 4) she was able to swallow medium thickness liquids effectively … so stuff maybe up to the consistency of thick honey.
CHALLENGE: She was unable to swallow a pudding-thickness medium or water-thickness medium. The pudding-thickness stuff had to be spit out to keep from choking her, and she aspirated a little bit with the water-thickness liquid. THE GOOD NEWS is that, as she keeps working and the nerves and muscles in her tongue regenerate, these things should self-resolve. But for a good while, Linda will need to remain on a feeding tube, as she cannot drink water or swallow solid food.
SUCCESS: HOWEVER, at home she has been able to swallow very small amounts of apple sauce, jello, yogurt, etc. I keep a close eye on her and keep the suction machine ready in case she gets choked. But she is handling it pretty well, and this has been a major morale boost. She describes it as “bliss.” Funny the things we take for granted…
SUCCESS: Speech therapy is going well. While Linda does not have lateral movement of her tongue yet, there are signs that it is starting to develop. And just in the last few days, with her speech valve on her tracheostomy tube, she is starting to talk a bit. While her speech can be difficult to understand with words that require certain tongue movements, there are numerous words that are understandable. Her vocal cords are still largely paralyzed, and her voice is kind of high-pitched and raspy, but she is leagues beyond where she was when got home a few weeks ago. Our speech therapist, Kendall, is really good, and the electrical stimulation and speech therapy treatment she is using with Linda is really starting to show its value.
CHALLENGE: We have had to purchase some supplies, as our providers have been unable to get them covered under Linda’s insurance. And insurance is also balking at providing enough speech therapy appointments for what is looking like at least a 6-month recovery time — but everyone has been cautious and is saying it’s difficult to pinpoint how long recovery will take. Her insurance has only approved 8 speech therapy appointments. She will complete these in a few days! We are going to be appealing this, as their understanding of the seriousness of Linda’s condition seems to be lacking. Our ENT will be assisting us in pursuing an appeal. In the meantime, we are purchasing whatever supplies have been lacking and are about to start paying for speech therapy appointments through Linda’s GoFundMe campaign ( https://gofund.me/2ecd2230 ). So THANK YOU, THANK YOU, THANK YOU to those of you who have donated. That has been an amazing blessing to us. We had no idea how great the generosity would be.
CHALLENGE: I start my new job on April 1st and we can no longer use home health visits. In order to get outpatient speech therapy and other specialist care, we had to terminate the home health visits. The insurance does not allow you to have any out patient services and be on home health at the same time. Thankfully Linda’s parents will be coming to help from tonight (March 29th) through April 12th and Linda’s friend Susan will be coming to help from April 26th through May 3rd. WE ARE IN NEED OF SOME HELP FROM APRIL 13TH THROUGH APRIL 25TH. A friend or family member would be welcome to stay with us for any portion of that timeframe if they are able to help out. A second option would be for us to hire someone to stop by a couple times a day and help her. Of course, we’d rather have someone Linda knows (friends & family) but we are so grateful that we have the donated funds to pay for any help we need. We are crossing our fingers that when May comes, there will be options available for what she needs at that time.
We can’t thank you enough for the outpouring of prayers, cards, flowers, kind words, well wishes, and generous donations. Linda has the cards set up on a table so she can re-read them when she’s having a hard time. All of these things have been a great encouragement to her, so THANK YOU!
Please continue lifting our family up in these difficult times, giving thanks for our successes.
Sincerely,
Tom Aaron
