Monday, November 23, 2009

Avagrace's new med plan, Violet's kidney's and Christmas is coming, and more of course!

SUDEP is sudden unexplained death in epilepsy. The likely hood of this affecting a person increases with several factors. One is age. The younger and the older a person is the more likely they are to experience it; that is patients under age 10 and patients over the age of 40. Another factor is the number of medications used to control their epilepsy. If a patient is on more than one the statistics go up exponentially. Another indicator is the type of epilepsy that the patient suffers with. If they have more than one type of seizure the chances go up even more as well.

Other than that, there is no rhyme or reason, nor understanding as to why this occurs. It is much like SIDS in babies although SIDS affects any baby no matter their health, age, race, gender. Therefore SUDEP is a bit more common in those with epilepsy than SIDS is to the general population.

That being said Avagrace is five, she has advanced generalized epilepsy, she has had each type of seizure and she has only ever been controlled on more than one medication. However, when on two medications her regression and mood changes are so severe that she has forgotten her name, colors, and other well-known to her facts. She has also been a terror and if any of you know Avagrace you know that she is a true gem and especially for me, never acts up.

SO, today is her first day on one medication for quite some time. Please keep her in your prayers. She has been going through the transition for ten weeks now.

On another note our Violet continues to have troubles with her kidneys. She will be undergoing some pretty extensive testing to see if her kidneys are working properly and to try to figure out where the scar tissue is coming from on her kidneys. She has been on antibiotics for several months to try to kill the current UTI, bladder, kidney infection but it just won't give up. She is in a lot of pain so please keep her in your prayers as well.

Lastly, I want to share with you something that has blessed my family and helped Aidan when he misses his daddy, and has helped these little girls get through all of their doctors visits this year. They are beautiful handcrafted dolls made of all natural products, including being stuffed with all-natural wool. They are called Bamboletta Dolls and they are gorgeous, durable, and the wool takes on the smells of our family. It is really neat to get Bren to sleep with the dolls before he heads out for a TDY or deployment because the dolls smell like him for weeks (NO JOKE!) I will take a picture next time he is cuddled up with a multitude of dolls (he may get me just for writing this but I think he is an amazing Daddy). I will show more pictures after Christmas of my kids with their dollies but the girls are getting dollies that look like them for Christmas so it has to be a secret for now. Avagrace got a mermaid for her birthday and that is what has started this little family of dolls. I am sure that Violet's baby from Bamboletta will quickly replace "Big Baby" and as you all know "Big Baby" even made it into our church directory picture this year. So why the change? Plastic is poisonous and Liam is highly allergic to continuous contact with plastic. His blisters are getting worse and so we have to be more and more careful. Secondly, all natural family made is the best thing for our economy and I have gotten to "know" the owner and maker of Bamboletta dolls and she has been a God send. I pray that she is blessed even more than she has blessed me! And one last thing, children with epilepsy do not need anything harsh nearby when they have a seizure. If Gracie was to have a seizure while she was sleeping (and this does happen often) her doll will not injure her. Moreover, my kiddos can take their doll with them in any test that they have because there is no metal, no plastic, and no dangerous substance to react to the machines. When Gracie had her EEG she took Marie (her mermaid doll) with her and we were able to put nodes on her head, actually Marie has had a sleep study, an EEG, an X-ray and an ultra-sound of her heart! Violet has had to leave Big Baby on the sidelines but after Christmas she will have a dolly with her during all of her procedures and her upcoming Kidney surgery if it does in fact happen. Please check out the site. You can custom order dolls or you can pick a doll that she has to sell but be warned they sell out in hours, sometimes minutes, when she uploads the new dolls on Friday! Enjoy!

Oh and that speach Bren was going to share? He delivered his speach and it went very well, but now he has doubts about sharing it! He is shy what can I say! I think he will share it soon though!

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