Kyra Lynn's Journey

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Kyra Lynn's Journey

A page dedicated to our warrior princess Kyra. Where we can add pictures and stories well wishes love and support.

This is a small explanation of Kyra's condition

http://www.childrenshospital.org/conditions-and-treatments/conditions/encephaloceles

03/03/2025

Miss Kyra saying hello to all of our friends and family! It's been a while but we are doing great and excelling in 5th grade!

28/07/2024

We are doing cheer!

07/06/2024

This girl is amazing! She climbed the wall after saying she was too scared to. She got above the sign and came down. 4th grade trip! Doing amazing things

22/01/2022

We had Kyra's annual appointment in Boston yesterday. Dr says mri was not needed and he will do one next year. She's been stable for 6 years and unless she showed symptoms they are comfortable waiting. The pediatrician that is part of the clinic says that he is ok with coordinating with her primary and discussing treating her for ADHD. This child has definitely given us some scares this year with her impulsiveness with her actions and impulsive eating. We are also in the process of bringing up her ophthalmology appointment because she's been without a proper prescription for her eyes in 2 years. We are setting up appointments for a sleep study and with neurology. Kyra has been getting almost daily headaches and the Dr is unsure if there is something going on with her brain or something as simple as she needs a new prescription for her glasses. It's a wait and see.

01/09/2021

5 days before this lady's birthday! She is a true miracle if you were ever to look for one

27/08/2021

Today was this little lady's first day of 2nd grade!!! She was so excited and happy to go back to school. I have yet to meet the new members of her team but I am eager to, and ready to work with them to bring Kyra's learning even further.

29/04/2021

Our silly girl this morning. She said "mama I look like a puppy! I love it! Can we get a puppy?" Lol no baby girl, maybe one day but not now.

26/04/2021

Happy Monday everyone! Kyra had a rough week at school last week so here's to a positive beginning to the week this week.

15/03/2021

Happy Monday everyone. A beautiful smile to bring some light to a crazy day.

25/02/2021

This girl is ready for the day! Thursday and it's an in school day

23/01/2021

So Kyra did great yesterday. Her brain is stable, the cyst is still there and we discussed the chiari 1 malformation that she has. This can cause headaches, all over discomfort and other issues I'm going to have to research some more. The pedi she saw yesterday also says she may benefit from some form medicine to help her with the impulsiveness shes got going on. The neuro-psych evaluation that we are starting on Thursday will be a better guage for if medication will help her. It's so scary to think about medicating her, but if it helps her we are willing to try.

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