17 years!

[mg12061]

Hard to believe yesterday January 18th marks 17 years since Kathleen's first stroke, she was almost 5 years old. Like most people I could not have conceived the idea that a young child could suffer a stroke! I barely remember the neurologist explaining Moyamoya because I was just praying please don't end this conversation with "there's nothing we can do for this". Prayers answered, there was a surgeon in Boston who could treat this with surgery. April will be 17 years out from surgeries, and her major strokes after surgery. How can something seem like yesterday, and seem like a lifetime ago all at once? This forever changed Kathleen's life. For 17 years she has worked her butt off to get and stay strong, through much therapy, hard work, lots of stretching, botox injections, AFO's, and surgeries. 17 years of Doctor visits in order to peel away the layers of things the strokes have caused. We are forever thankful that she has been strong enough to weather through all that has been thrown at her because of this awful disease called Moyamoya. We are thankful that it didn't take her spirit! We are thankful that her smile returned quickly.(it was crooked for a while). I am thankful that god listened to my prayers and all the prayers that I know came from friends and family. She continues to be my HERO every single day! I continue to be thankful for all that she has taught me every single day.First picture was a couple months after her major strokes. The second one is proof that nothing will ever hold this lady back! WP_20160114_001.jpgWP_20160625_002.jpg .

Mary Grace
P.S. My dads stroke was 40 years ago on the very same date! He passed away from his stroke a few days later...

[mg12061]

A little update for Kathleen... We had a Shriner's appointment Thursday. We are really going to miss the care we've gotten there. She will age out in March when she turns 22. She had an electronic gait analysis, saw the Dr. and had adjustments made to her AFO. They had put a small lift on the left heel to keep her knee from hyperextending but she really never was able to adjust to it and get steady. Stairs were a nightmare for her and myself. I was sure at some point we'd both fall. So the dr. watched her walking and saw what was happening. Since she was no longer able to lock her knee in hyperextension her knee was buckling and making her unsteady. So unfortunately we will have to sacrifice keeping her knee safe for keeping her walking more steady and independent. With her orthopedic issues it's always a little give and take. We fix one thing but it can always cause a different issue. The Dr. wrote a script for some PT since she isn't getting any right now and OT to address tightness she's been complaining of in her left hand and arm. She's been crying sometimes at night that her arm is tight. They will work at helping us to find the best care here at home and get all her tests and record together to transfer.
Kathleen also saw her GI Dr. all is going well on that front. He's a pediatric Dr. but said if we want her will keep her on indefinitely. I'm so glad, he's been with her for so long and knows her so well. H'es been so proactive about all her issues and has helped us to peel away so many layers of health issues. He listens and helps us get to the bottom of it. He's definitely a keeper! Next week we have a meeting with a care worker who is someone that will help us through the next steps for Kathleen. Give us ideas of programs that will help us to keep her busy. I'm hoping for things like aqua therapy, maybe even hippo therapy. Some volunteer work with an aid etc.... Who knows maybe drum lessons LOL!!! Thanks for traveling this journey with us

Mary Grace

[funnylegs4]

Wow 17 years post stroke! So wonderful! I'm so glad Kathleen has done so well! In regards to your comments about children having strokes here is a great podcast about stroke in children that mentions both MoyaMoya and Cerebral Palsy http://strokecast.com/2019/01/18/epi...her-fullerton/ I also wrote this post that mentions the similarity between stroke and CP for a blog about Stroke called "The Stromies" https://www.stromies.com/blog/guest-...e-of-endurance "The Stromies Blog" does a lot of guest posts and I think Kathleen's story would make a great addition to that blog if you wanted to write a blog post about Kathleen's amazing journey. The 3 ladies who run the blog are so incredibly sweet and one of them had the same type of stroke my teacher had with the same symptoms so it was nice to get her input on how to help him etc. I'm so sorry you lost your father to a stroke!!! Eerie to have it be the same day. My teacher also lost one of his family members to the same type of stroke he managed to survive hence why he always seems interested in what kind of strokes have inherited causes. His sibling also died of a progressive neurologic disease of a different sort. :'(

Thanks for the update. I did both aqua therapy and hippothearapy and recommend both! AFOs always messed up my knee alignment too. I get tightness in my wrist and bending it in one direction and than the other helps. Gentle dancing with both arms and legs also helps.

[Earth Mother 2 Angels]

((((((Mary Grace & Kathleen)))))) ~

What a milestone! How right you are that nothing holds Kathleen back. She is an incredibly strong young woman, with such a beautiful spirit and zest for life. And her smile lights up a room!

I remember the transition to adulthood, and it can be a tough path. But it sounds like you are getting great support from Shriner's and from Kathleen's pediatric GI. I pray that the PT and OT will help Kathleen, and that she'll be able to receive these therapies for a significant amount of time. I'm so grateful that Kathleen's GI situation is good.

I have no doubt that a major contributing factor to Kathleen's triumphs is your remarkable devotion, love, care and diligence.

Prayers, as always, for you and your family and many more fantastic milestones.

Love & Light,



Rose

[mg12061]

Funnylegs, I'll definitely check out both of those links! Thank you. I'd love to add a post about Kathleen's journey. We always take advantage of educating others about pediatric stroke and moyamoya. My dads stroke was caused by a circle of willis aneurism. We were told the type it was was hereditary. My sister was checked and found to have the same aneurism and had it clipped. I was checked and so were my other 2 kids. None found thank god. It's kind of crazy because moyamoya isn't usually hereditary but there are a lot of neurovascular issues in my family history. My grandmother had a stroke and an aneurism but lived with it till she was 90.
Rose, Thank you for all your kind words. I will take advantage of therapies as long as I can! She's better at doing these things for others than she is for me. But I'm sure I can carryover some of it to the gym with us.
Thank you both for always being there and following our journey and sharing yours!
Mary Grace

[funnylegs4]

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Funnylegs, I'll definitely check out both of those links! Thank you. I'd love to add a post about Kathleen's journey. We always take advantage of educating others about pediatric stroke and moyamoya. My dads stroke was caused by a circle of willis aneurism. We were told the type it was was hereditary. My sister was checked and found to have the same aneurism and had it clipped. I was checked and so were my other 2 kids. None found thank god. It's kind of crazy because moyamoya isn't usually hereditary but there are a lot of neurovascular issues in my family history. My grandmother had a stroke and an aneurism but lived with it till she was 90.
Rose, Thank you for all your kind words. I will take advantage of therapies as long as I can! She's better at doing these things for others than she is for me. But I'm sure I can carryover some of it to the gym with us.
Thank you both for always being there and following our journey and sharing yours!
Mary Grace

Hi Mary Grace, The Stromies email is here tamsenwrites@gmail.com if you want to contact them about your stroke story. Wow! Your grandmother and other relatives are lucky to have survived! I'm glad your grandmother lived so long.