Edmond turned one years old this past Saturday. Below are pictures of his first birthday party :) We are so very proud of him. Update on things is that he continues to be on two medication for seizures and has continued to have 5-8 seizures daily. We are considering stopping the Topamax and trying a medication called Onfi, but it has only been on the market for 6 months so that's kinda scary and it is for a specific condition called Gestalt Syndrome I think. But I think they just try all kinds of stuff on Edmond to see if anything works since there is not a medication tailored specifically for Lissencephaly because it is so rare. Edmond had to increase the Topamax and has not had the weird side effects that he had when he first started it, so that has been good, only it isn't stopping the seizures. From my understanding I keep being told that some children suffer from many more seizures daily than Edmond does, so I never know what my expectations should be. Right now he continues to grow and eat, and the seizures have not interrupted his ability to eat, but they do limit his active hours because he gets so tired from them that he doesn't want to be awake and play, and that's never good. We will probably have to try out the Onfi and see if it helps him. At this point, since more than 3 medication treatments have failed with Edmond, he is eligible to receive VNS therapy, which is like a pace maker that they surgically insert under his collarbone that sends impulses to a large vein in his neck that is directly connected to the brain and this method has been proven over the last 20 years to reduce seizure activity, I think this would be an option we would turn to if seizures became constant and uncontrollable. There is also the ketogenic diet which is a high fat diet, but I haven't been very interested in this because it doesn't seem that there is a high chance it would really help Edmond. You never know until you try but we haven't seen much results with short term therapies such as the steroids that are supposed to produce longterm results and it is really hard on Edmond those types of short term high risk therapies. Alot to consider.
Thank you to everyone who joined us for Edmond's party, we had a great time connecting with family and friends and showing off the kiddies. I probably did go a wee bit overboard on the theme with treats and decorations, but honestly it was like therapy for me to be able to make the details special and focus on happy party stuff instead of seizures and sad stuff... little bit of an escape for mom, so excuse the excess, but I had fun trying to do homemade train cookies and cake pops etc...
If you scroll to the bottom there are pics of Edmond doing some of his vision and physical therapy.
|Homemade Thomas Cookies|
|Cake by Mitzi Cakes, oreo cookie cake yum!|
|My cake pop train display!|
|Special Appearance by the Eden Express :)|
|Lola and Lolo, couldn't have done this party without all the grandparents' help! |
Including Papa Mark, Grandma Carmen and Ama Liz (who took care of the kids for most the party)
|Papa Mark, Grandma Carmen and Edmond D. in his ray bans|
|The Wonderful Grandma Liz and Auntie Tricia|
|My lovely guests the Vinculados... minus Isaiah|
|Beau, Fran, Steve, Keith, and Jesse, my husband's support group :)|
|Spooners, we love you guys :) THanks for not being a flake like me.|
|Auntie Kelly, the Eden Express, and Bot Bot ( my lovely grandmother Wong)|
|Eden and Lyvia try to high jack Arianne's Bike!!!|
|The cousins chillin the shade.|
|Edmond D. getting his lunch from Auntie Kelly in the shade with his Goo Pa Sandra.|
|Caleb schooling everyone on how to bust up the Pinata|
|Sweet Isaiah and his mommy|
|Uncle Ellis TCB, taking care of business!!!|
Here are some recent pics of Edmond doing his in home therapy with his physical therapist Alyssa and also pics of him doing his vision exercises with his light box contraption that helps him to focus on objects as he has visual impairment due to his brain condition.