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Lily’s Story

Site created on January 6, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

On Friday, January 4, Lily went ice-skating with a friend and was having a great time. She did not fall or hit her head, but suddenly she said she got an awful headache, blurry vision, had trouble walking and started throwing up. I picked her up and ended up bringing her to the ER at Hackley Hospital. They took her straight back and started assessing her and the doctor said he wanted to do a cat scan to rule out any bleeding in her brain, but he didn’t think it would be that. He was hopeful it was a migraine.

The doctor came back and said the scan showed blood, but the radiologist couldn’t determine a reason. He said he was already talking to neurosurgeons in Grand Rapids and they had the Aeromed helicopter on standby. Luckily, she was stable enough and Pro-Med could get an ambulance over within the hour to take her to DeVos Children’s Hospital. She’s been in the Pediatric Intensive Care Unit. The neurosurgeons ordered a procedure to insert a tube into her brain to drain the blood & also a vascular cat scan that would show them a better view of her vascular system in her head and neck. However, that scan didn’t solve the mystery of the bleeding so a angiogram was ordered for Saturday morning, during that procedure they were able to diagnose her with something called AVM, which is a malformation of some of her blood vessels. Some people can have them but never know it, but sometimes they come under pressure and start to leak.

In a few days, Lily has to have a craniotomy to open her head up, take the patch of bad blood vessels out and put some plates in her head. The doctors are confident she will be just fine when this is done. On a scale of 1-6, with 6 the worst they said her condition is a 1. Thank God!

We are so overwhelmed by all of the love and support we’ve received! Texts, emails, Facebook posts, messages—- thank you from the bottom of our hearts!! The offers to pray, sit with us, feed us, walk and feed our dogs— is so touching and something we will never forget! Thank you! Xoxo

Here is more info on what her condition is....
https://en.m.wikipedia.org/wiki/Arteriovenous_malformation

https://www.google.com/search?safe=strict&client=safari&channel=iphone_bm&source=hp&ei=UxA0XIuwPOOLjwSLq47wAw&q=avm&oq=avm&gs_l=mobile-gws-wiz-hp.1.0.35i39j0l2j0i131l2.3267.4719..10056...1.0..0.172.388.1j2......0....1.......5..46i131.OWYcja8ucqU

https://www.mayoclinic.org/diseases-conditions/brain-avm/diagnosis-treatment/drc-20350265

Newest Update

Journal entry by Rhonda Rosenberg — Jul 8, 2019

Today was Lily’s six month angiogram procedure at DeVos Children’s Hospital to make sure the resection of some of her blood vessels in her brain are ok! Dr. Singer said everything was great and that she looks fantastic inside & out! Thank God! From now on, she will need an MRI every year and eventually every couple years.
We told him that she’s had way less headaches now that school was out, which he wasn’t surprised by and that her final grades were all A’s, A-‘s and 1 B! She’s our miracle!

Headaches and noise sensitivity are her only issues now. Time should heal, we just need to wait.
Thanks for the prayers, love & support! 😊

Read More of the journal titled "July 8, 2019"

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