First of all, thank you to all of you who continue to check the site in hopes of seeing an update on Kerrie. As I’ve said in the past, one of my main goals has always been to keep you better informed on Kerrie’s progress through more frequent updates. However, continued medical/legal battles at every turn along with the other aspects of daily life has not afforded me much time to devote to comprehensive updates. Therefore, my future goal is to produce shorter, more frequent updates so there are no more major delays in sharing Kerrie’s progress.
With that said, the past couple months have been both incredibly frustrating on the insurance front and very hopeful with regards to medical progress. Kerrie remains at The Ridgewood Center in our town, which is extremely convenient for our family. However, despite another NJ State appeal victory against Horizon BCBS of NJ in late July, the insurance company quickly denied Kerrie’s covered services and forced us back to another appeal at the state level. During this time, Kerrie had begun to eat exclusively by mouth for the first time since her injury, which demonstrates huge improvement! Unbelievably and despite these improvements, we lost our next state appeal in early September. As a result, Horizon ended Kerrie’s insurance coverage at the sub-acute level.
Kerrie does continue to get skilled services at The Ridgewood Center as we move forward toward alternate insurance coverage options. We are very thankful for this because Kerrie continues to show slow, but definite improvement. Thankfully she has never conformed to the insurance restrictions that surround her! Instead, she continues to fight unbelievably hard to return to the family and friends that she loves so dearly. I frequently hear from clinicians that say that Kerrie is “trying so hard” to get better. This is obvious to us on a daily basis, but it is still nice to hear from others!
Here are some examples of progress since the last update:
- Kerrie has been able to eat all of her meals by mouth with the help of the family and staff (pureed foods and thickened liquids), and she continues to improve with this on a daily basis.
- She is able to pick up and release objects like a water bottle, and also attempt to drink from the water bottle (an obvious improvement in her level of consciousness).
- She has recently been able to drink thinner liquids from a cup, which demands quicker and more precise swallowing.
- Kerrie continues to say new words or phrases from time to time, and responds appropriately in short conversations. For example, I can say “we missed you yesterday” and she will respond with “aw, I missed you too”. She will respond “thank you” when I tell her she looks beautiful.
- She is able to complete the words to some recent songs and some old phrases/sayings. This suggests progress on both sides of the brain (music and spoken word).
- Kerrie’s Speech Therapist is now working toward having her take her medication orally which will hopefully lead to the PEG tube finally being removed.
- She is able to brush her own hair with instructions (although inconsistent).
- In just a 4-5 week span, Kerrie was able to increase her effort on the arm and leg bikes from 35% to 71% effort and 45% to 90% effort respectively. This is huge improvement physically.
- Kerrie is able to catch and hit a balloon back with her hands to the rehab staff. This demonstrates a significant improvement in hand-eye coordination, cognition, vision and motor learning.
There are also countless improvements that I see on a daily basis, which cannot be quantified. I see the positive change in how she looks at the kids and I. I now see her intently staring at the Liam, Fiona and Maeve with a big smile on her face. She is watching people more and is in more touch with her surroundings. I continue to see her mannerisms come through, such as the sarcastic smirk that she always did when I forced her to smile! The eyebrow expressions without talking, and even the playful, sarcastic laugh that I’ve always heard when I demanded a laugh! I’ve also seen glimpses of the parenting come through, as in the time Fiona jumped in front of her and clapped. Kerrie jumped, looked toward Fiona and responded “Easy!” I am sure that along with all of the outward progress she has shown, our Kerrie is very much “in there” and fighting to get out.
Additionally, we are happy to say that Kerrie may be entering a brain injury study in NYC in the near future, which will, perhaps, give us some knowledge on how to further support and enhance her progress. Needless to say, we are very excited for this very special opportunity.
Other opportunities have presented themselves in the form of media attention. Our story was highlighted in a recent, comprehensive LaPresse (major Canadian news publication) cover story on DPD deficiency, and further media attention will soon follow. It remains our goal to get Kerrie’s story out to the public any way that we can. This will not only help Kerrie with potentially new avenues of medical treatment, but will undoubtedly save countless lives.
Through all of this, Kerrie has never stopped her fight and doesn’t show any signs of slowing down. Therefore, it remains our job to support her the best way that we can. This can be through simple, but highly effective interaction with family and friends. As I have alluded to in the past, experts have created a brain recovery analogy to everyday roads and traffic. For example, in patients with lower consciousness states than Kerrie, the brain lacks the infrastructure for the roads and therefore the cars cannot travel on them. As in Kerrie’s case, she is more conscious and the “roads and highways of the brain” are intact, and more cars are starting to travel on them. She is making more connections and continuing to show improvement. We need to help her re-establish those brain connections, or help to get more cars on the road and going to the right places.
You Can Help Kerrie’s Recovery
…for those who wish to reach out to her, simply send a video, audio or email message to help her re-establish the connections…she needs more stimuli from others that she also knows and loves.
I don’t mean to demand that you go see Kerrie, as I know there are many reasons (some very complicated) why it is difficult to do so. All I am asking is for those who wish to reach out to her, simply send a video, audio or email message to help her re-establish the connections. Since my last request 4 months ago, we have received only one email and one video message sent to Kerrie. There have been some wonderful people who continue to see Kerrie on a regular basis, but in my opinion, she needs more stimuli from others that she also knows and loves. I want her to see and hear from her friends, family, co-workers, etc as you’ve all played an important part in Kerrie’s previous life, and have an equally important role in her returning toward her current and future life.
To aide in everyone’s “reconnection” with Kerrie, I’ve added a video at the end of this update, which will hopefully add some perspective to just how far she has come. The video begins just after months of Kerrie being unresponsive, and highlights some milestones in her recovery to this point. I hope to continually post frequent videos and pictures as more milestones (small or major) are achieved. I must admit that Kerrie is far away from where we all want her to be, but we cannot overlook the strides she has made to this point. Personally, I choose to think that since she has come this far, why can’t she continue on this path? (Messages can be sent to: MessagesForKerrie@gmail.com)
Again, thank you for all of your continued support (financial, moral, spiritual, etc) that you have offered us throughout the past year and a half. I constantly hear from people who say that they think of Kerrie daily, and that means the world to us. It gives Kerrie continued fuel for her fight (because I tell her all about every message of support), and offers comfort in knowing that I am not alone in my fight to support her. Please continue this incredible support. I look forward to writing my next post so that I may share Kerrie’s future progress!
Glenn, along with the Prettitore and Matteo Families