For those of you that don't know Brionna is the 2 year old daughter of my best friend and was diagnosed with a rare form of Crainiosyntosis. Which in basic terms means, her skull grew closed too early when she was an infant. This resulted in her needing surgery to put screws into the top of her skull and then her parents had to turn those screws daily to help the skull grow and expand. If her parents would have chosed not to do the surgery the doctors gave her a 10% chance of living 6 months. With the surgery the chances are only 50%. Since this surgery was so new and her condition so rare her doctors had to fly in a doctor from Germany to teach them how to do the surgery. Brionna has been through 4 surgeries since last March or April. The first surgery was just to remove a bump she had on her head. The second was to put the screws in, and the third was to fix one of the screws that hadn't been working properly. The fourth was to remove the screws when her little head just couldn't stretch anymore. It is unclear how many more surgeries she will need throughout her lifetime. This is not something she can just grow out of.
Now, onto the update.... Brionna had a long time without any new problems and her headaches had reduced to one a week. We were all thrilled that she had been doing so great! However, this last week, she has started getting worse headaches and they became more frequent. Also over the weekend, she was playing and started to shake and fell on the floor and continued shaking. She was unable to hear or respond to her parents. Her parents beleive it was a seizure. Another new symptom has appeared this week as well, she is waking up screaming and shaking at nighttime and naptime. Her mom wasn't sure if it was nightmares or what.
I'll keep everyone posted as I get new information about Brionna. There hasn't been any updates since October which is why it took me so long to give you guys any news on her. She could still use some extra prayers from anyone that can spare them.
Mega rays and prayers on their way to Brionna. :pray: That poor little girl has been through so much. I pray these new problems disappear so Brionna can enjoy the magic of Christmas.
Annie
Please do keep us informed on how she is doing. I cannot imagine how difficult this must be for everyone involved. It sure does make the every day little worries seem pretty insignificant when a child of that age has to deal with such a horribly heavy burden.
God Bless you for being so incredibly supportive....
Rays and many many prayers will be said for Brionna.
Many, many prayers and rays on their way to Brionna...poor little baby....it breaks my heart...I too pray these symptoms will go away so she can enjoy the wondrous magic of Christmas. This little baby has endured way too much... :pray: :pray: :comfort: :comfort: Thank you for keeping us posted on Brionna. You are a wonderful friend.
This is heartbreaking and I will keep little Brionna in my prayers. Please tell the parents we are praying for all of them.
Thanks everyone. Her mom and dad are really touched that they have so many people praying for their baby girl. I have to say I'm most proud of Brionna's big sis Alexandria through this whole thing. She is only 5 and has been such a sweet little helper to her mom. She helps take care of her sister and baby brother. Also she helps clean house and doesn't complain about her sister getting all this extra attention. It really is hard on the whole family. Especially Brionna's two siblings who don't really understand what is happening.
I haven't gotten any new updates on Brionna yet today, but I'll be sure to post if something new develops.
Poor Brionna. :pray: for her and her family.