This week has been a bad one, as far as the seizures go. Reese seems to have had a flurry of seizures--right when her neurologist goes out of town--and is exhausted from it. We have never had a seizure-free day since the onset of the disorder in February, but we did have her down to 2-4 clusters a day. This week she has had about 10 a day. Ugh...
So, no, we have not seen any improvement on the Ketogenic Diet--yet. She is not yet in ketosis, so we continue to adjust her recipes until she is there. We have seen her ketones increase to "moderate" range, so we know we are on the right track. We have seen a few glimmers of hope, particularly a huge smile and laugh. That was wonderful!
Another difficult thing...
We started Reese's classes at Foundation for Blind Children. I have to say, I have been dreading this for 10 months. I didn't want to go there, didn't want to agree that she needed their services. I didn't want to see the other children and didn't want to burst into tears as I walked through the door. But, I have been told that they offer the best services in the state and if I did anything, I should be a part of FBC. They offer an infant program every Friday from 9-11:15 and a class for siblings at the same time, so Olivia can feel a part of it too. I was excited for Reese, but nervous for me.:) I swallowed hard as we walked through the front door. They did music therapy, which I loved. I got to interact with Reese and stimulate her hands, feet, tummy, head, while we sang. She really loved it! Then they did centers where they did sensory stimulation, individual music therapy, light therapy, etc. For the second hour the Developmental Specialists take the kids and the parents meet for information and support. When I had to introduce myself and Reese, yes, I did burst into tears. Not again! Although I love what they offer Reese, it truly is emotionally gut-wrenching. I know it will get easier, but that is not a place any parent wants to end up. I was encouraged by hearing from moms of older kids. They are happy, their kids are happy, and they have adjusted to a different life from what they had planned. One of the moms of a 3-year old girl explained that her daughter had been born without eyes. She said it was horrible at the beginning but now she has realized all of the good that has come from it. Wow--isn't that God? He is amazing and can take a tragedy and make it only good. I was so encouraged by that mom and the joy all over her daughter's face.
As for Reese's vision...we don't know exactly how much she can see. Based on her diagnosis, she qualifies for services at the Foundation. That tells me they expect her to have vision issues but it is hard to measure because of her age and current condition. But I do know she looks at us, she furrows her eyebrows when she is concentrating on a face, she looks for her favorite toy, she responds to light, and her favorite color is yellow. They have told us she has cortical (neurological) vision impairment, which means it is not so much an eye issue as a brain/communication issue. Her brain doesn't always communicate the messages from her eyes--but sometimes it does!
Thank you for sharing how Reese is doing. She is SO blessed to have you as her mom. Everything you do with her is incredibly heartfelt and wonderfully loving. We deeply admire you. All of your girls and sweet Mario have a most remarkable woman in your family. We thank God for you. You are doing a super job! We are confident that your life makes Christ so proud of you.
ReplyDeleteKerry, you are in my heart as a mother who shares some of the same obstacles I have. through my daughter, Taylor, I know feeling of being scared of the unknown and uncertainties surrounding your child's future. I know how it feels on those days when you see her smile or at least, respond, to your touch during her therapies. I remember watching her struggle just to lie on her side without her feeling like she was going to fall off the edge of the Earth. I remember feeling so proud of her while watching her try so hard to make subtle little movements with her body that we all take for granted and eventually accomplishing them with such pride in her face. She was so tiny and so young. How could she be so smart?! but she was and is and so is Reese.
ReplyDeleteThese girls are fighters and know exactly what they have to do to get healthy.
Here is what is to come.....you will become so hyper- aware of her every little move and eye contact and grip of your hand. You will cry at every therapy session until one day you will notice that you are not crying anymore. and you will feel god's hand on you through it all. Then one day Reese will make a huge accomplishment of some kind and you will be sooo proud of her and not even notice your own accomplishments of strength and keen observation until someone points it out to you. This will make you stronger and at times you will not even recognize yourself because you are finding strength you never knew could exist and will learn the true definition of altruism......all for the love of Reese and God.
Love and prayers,
Kim