Tuesday, May 31, 2011

Memorial Weekend in Pictures (with a Few Updates)

Playtime with Daddy on a lovely warm and sunny Memorial day. William is using his special Childrite chair to practice sitting!!
My big boy sitting tall in his chair.
Our newly planted Garden with a pathway for the dogs (currently training them to use it ;-) because they like to run right through the flowers to our side door. The white fence is a work in progress but coming along nicely. Before our new neighbors arrival; their Realtor informed us of their "deathly fear" of dogs. We had been planning a privacy fence for some time but this was the true motivator to begin building. As it turns out the new neighbor and her four year old daughter are wonderful and actually tolerating the dogs. Over the weekend Ella played at their house for the first time; I was thrilled ;-) The woman was born in India, she moved to the United States 10 years ago, she cooks delicious smelling traditional Indian food, and has traveled extensively... which I find fascinating. For as long as I can remember I have owned a wall size world map and have always dreamed of visiting exotic lands and cultures. India is one of those places, among many, that I have yet to see.

Ella giving William a little push in his Pony gait trainer... "Go William GO"...
Modeling mommy's glasses in her new summer pajamas.
There was a frosted cupcake on the plate in front of William!; he's very happy to be eating a variety of foods again since stopping the Ketogenic diet. Unfortunately, he is once again having multiple seizures every day. Last week he had an EEG (two dozen wires glued to his head for over an hour) which was very stressful for us both and the technician. He cried and fought nearly the entire time; very difficult to watch. ( I think that will be the last one for a long while). Today we had a follow up appointment at Strong hospital with the Neurologist. Our Neurologist is a kind man and extremely intelligent but not very aggressive with treating William's seizures. He maintains an outlook that because of the severity of Will's brain malformation seizures will be a constant during his life and that it won't harm him to let the seizures happen (to some degree). I of course keep asking if the seizures can elicit more "seizure pathways" and interfere with potential development; and if so shouldn't we be proactive to gain control. He insists that the seizures will not do further damage to the brain and should not hinder development. I fear that he does not have great expectations for William's potential development based on his MRI. I do not want to limit my son's capabilities and am also very aware that seizures are uncomfortable and upsetting for my son. I can imagine they are not a pleasant experience to be having daily. Yet at the same time anti-epileptic medications can be highly sedative and have side effects; so it is a balancing act from hell. In conclusion and ending the appointment the Neurologist tells me that, " watching William have seizures daily must be very difficult so I will be as aggressive in treatment as you would like." Which means that he is willing to work with us but throwing the ball back into my court so to speak. So here we go changing medications and increasing doses again at my request... wish us luck....


  1. Hi Erin,
    Thanks for the pictures...if I can't see you that is the next best thing.
    YOU are a wonderful MOM.... trust you instinct when it comes to your children! God gives Mom's a special gift when it comes to their children.
    Keep up the good work... Oh your garden looks great too :-))) Aunt Sue

  2. I know, oh so well, how frustrating it can be when a doctor treats your child with limited expectations! Of course, without having their extensive knowledge, you questions yourself. I agree with your Aunt, trust your instincts.....you are a WONDERFUL mom and have been so strong for your family. Although you feel alone in your balancing act of life, you are not. I am only a phone call away, anytime! Carleen

  3. Go with your gut Erin...you are a mother warrior!

  4. BTW...it's Beth, but I don't know why it's says Queen B!

  5. I love his curly hair! And I love the pic of Ella pushing him along! Sorry to hear about the seizures again - I totally understand. Hugs!