Okay so this isn't the most pleasant video, as she is tired and messy from supper but I love the way she shakes her head no so emphatically when I mention bed time. Plus she's crawling! Love, love my sweet Ava.
Friday, August 19, 2011
Saturday, August 13, 2011
What a difference a day makes
I haven't posted in a while. At first it was mostly because I wanted to wait to see what would happen when we flew to sick kids in Toronto. I'm not sure what we expected. Just to move forward I guess. The neurogenetisist we saw was great. He thought we should check with glucose transporter 1 (I had already done much research on it and dismissed it because of unique seizure type with rolling eyes) He found Ava's seizure control was remarkable with the ketogenic diet and that her body was seizuring because glucose wasn't getting to the brain. He also wanted to look into the lysosomal disorders (bad!). I also have done a bit of research on these groups of disorders last year and stopped because it was awful. Basically your body can't process something and it builds up in your body and there is nothing that can be done. It continues to build up and wreaks havoc on your body until you die. Basically if that was what she had she wouldn't live past 13 or so. I relooked at that group of disorders and realized why the neuro thought it could be that. She is only suffering from myoclonic seizures which seem to be indicative of that disease. BUT. And this is really big. Ava is not neurogenetitive. Which means that while she is progressing slowly developmentally, she is still progressing. She is not going backwards. The only skills she seems to lose is her vocabulary. And then it is to put aside a word she knows well (like up, mom, baba) and pick up a new one that she will use repeatedly.
I don't think she has this lysosomal disorder. But I am glad we are checking, just to get it off the list.
She will be meeting with a new neurogenetisist here in Halifax (in Sept) and he (Dr. Chronic-what a name!) will see her and she will go for a biopsy to check if anything is building up. At the same time she will have a repeat MRI, spectoscopy and spinal MRI.
The neurologist we saw in Toronto was a complete jerk. We were in the midst of an EEG (about 45 minutes in (No seizures at all!!!) and his student ran in to tell us if we wanted to see the doc we would have to do it now. He only had 15 min. Okaaaay doc. We just flew in from two provinces over to see you. Grrrr. We pulled the leads off Ava and I ran down the hallway with her to the docs and he was sitting there legs lazily spread wide (jerk pose) and he said 'so, what do you want to know from me.' I was completely baffled. I looked at him like he was crazy and was like what do you think?! He kind of straightened up and gave some suggestions and ended up staying 30 min. But it was a bit of a disaster. Very disappointed.
The best part of our trip was seeing our family. It was a wonderful time of connecting and just hanging out. I can't wait to go back!
On to other updates. I am so proud of how my little girl is doing. She is working so hard. I/she took the summer off of all therapies and instead just enjoyed being a family. I think that is so important. While we laughed and giggled we would bring our own therapies in but only as a secondary, natural progression. Her personality is blooming. Her last big physical milestone was sitting at 13 months. Last night she crawled! While she has been crawling in small increments over the past six months (scootch, up in four point, collapse, repeat) Last night she crawled beautifully all over the wood deck (in bare knees!) She did again this morning and I am so happy for her. If she can realize that she can get and do what she wants when mobile, it will open a whole new world for her.
Her communication is changing as well. She is still communicating in kisses. "kiss" for yes or I approve, and "kiss, kiss, kiss" for hell ya! But now she is also talking in ba's. The best part is inflection. If you ignore that it is ba ba ba, it sounds just like a conversation. (we enjoy singing ba ba bararan together) She is clapping. It is the sweetest thing. She clapped tonight when we saw a band play at the fair along with everyone else. It was her birthday and I asked her how she enjoyed it. KISS! God I love that chipmunk.
Tomorrow we will be having her first bday party with outside friends from her school...two bouncy castles, and a ketogenic affair. If she can't have chocolate nobody will ;)
If you really listen to her, she says quite a bit. When she hers something new or that she enjoys she will put her hand to her ear and look at you inquisitively. (That is the dishwasher making that gurgling sound, or yup twinkle, twinkle little star!)
She also shows very well when she is upset, mad or frustrated. The other night she was pissed at me for some reason when I got home from work. Maybe because Craig was home and I was not. She refused to look at me when I said hello, exagerating it by turning her head completely away whenever I tried. When I had to leave again (first date night in many months) She caught my gaze and held it babbling sweet nothings until I melted. She laughs all of the time too. Sometimes a sarcastic guffaw and other times a deep belly laugh or girly giggle. All of us, Meg, Craig and I seem to have focused so much of our goals on getting Ava to laugh, it is such a wonderful sound.
Other communicating strides have been simple sign. Like slapping the ground or table twice for more. Kiss for yes. Shake head no (and really mean it) pull hair for nap, tap ear for what's that sound and my personal favourite; tap chest twice for I love you. (I taught her that).
She has us all wrapped around her little finger. :)
(Side note: I read the book Jesse this month. Happened to pick it up accidentally. When I realized it was a mother's story about bringing up a child with CP and he passed away (from seizures) in his teens, I felt it was not a good idea to read this book. Then I read how Jesse communicated in kisses and felt like I was reading about Ava. Jesse and his family had to fight so many battles. He turned into a beautiful poet and person, able to communicate through computers. His mother's writing is honest and hits very close to home and despite the sad overtones I recommend it for any mother going through the challenges of raising a child with a severe disability. (can find book here) http://www.marianneleonecooper.com/site/
Diet wise I was worried for a while. She kept falling lower and lower on the percentage scale with height. 95 (at birth) to 25. All her team told me it was no worry but really, when is it time to worry? When she falls to the negatives? The dietitian added protein and she shot up 4 inches. She sits now, happily in the 50th percentile (phew!)
Last year (it feels) at this time I was always worried about everything; seizures, global delay, what the heck was causing this all.
Today, I just feel content. Happy, that Ava is with us. Happy that she is moving forward (even if it is at a snails pace) Happy, that she wakes up every morning excited and giggling to meet the day.
I know tomorrow worry may come again with no warning but I'll take this feeling for now, because it feels good just to enjoy the simple pleasures that my family brings to me.
I don't think she has this lysosomal disorder. But I am glad we are checking, just to get it off the list.
She will be meeting with a new neurogenetisist here in Halifax (in Sept) and he (Dr. Chronic-what a name!) will see her and she will go for a biopsy to check if anything is building up. At the same time she will have a repeat MRI, spectoscopy and spinal MRI.
The neurologist we saw in Toronto was a complete jerk. We were in the midst of an EEG (about 45 minutes in (No seizures at all!!!) and his student ran in to tell us if we wanted to see the doc we would have to do it now. He only had 15 min. Okaaaay doc. We just flew in from two provinces over to see you. Grrrr. We pulled the leads off Ava and I ran down the hallway with her to the docs and he was sitting there legs lazily spread wide (jerk pose) and he said 'so, what do you want to know from me.' I was completely baffled. I looked at him like he was crazy and was like what do you think?! He kind of straightened up and gave some suggestions and ended up staying 30 min. But it was a bit of a disaster. Very disappointed.
The best part of our trip was seeing our family. It was a wonderful time of connecting and just hanging out. I can't wait to go back!
On to other updates. I am so proud of how my little girl is doing. She is working so hard. I/she took the summer off of all therapies and instead just enjoyed being a family. I think that is so important. While we laughed and giggled we would bring our own therapies in but only as a secondary, natural progression. Her personality is blooming. Her last big physical milestone was sitting at 13 months. Last night she crawled! While she has been crawling in small increments over the past six months (scootch, up in four point, collapse, repeat) Last night she crawled beautifully all over the wood deck (in bare knees!) She did again this morning and I am so happy for her. If she can realize that she can get and do what she wants when mobile, it will open a whole new world for her.
Her communication is changing as well. She is still communicating in kisses. "kiss" for yes or I approve, and "kiss, kiss, kiss" for hell ya! But now she is also talking in ba's. The best part is inflection. If you ignore that it is ba ba ba, it sounds just like a conversation. (we enjoy singing ba ba bararan together) She is clapping. It is the sweetest thing. She clapped tonight when we saw a band play at the fair along with everyone else. It was her birthday and I asked her how she enjoyed it. KISS! God I love that chipmunk.
Tomorrow we will be having her first bday party with outside friends from her school...two bouncy castles, and a ketogenic affair. If she can't have chocolate nobody will ;)
If you really listen to her, she says quite a bit. When she hers something new or that she enjoys she will put her hand to her ear and look at you inquisitively. (That is the dishwasher making that gurgling sound, or yup twinkle, twinkle little star!)
She also shows very well when she is upset, mad or frustrated. The other night she was pissed at me for some reason when I got home from work. Maybe because Craig was home and I was not. She refused to look at me when I said hello, exagerating it by turning her head completely away whenever I tried. When I had to leave again (first date night in many months) She caught my gaze and held it babbling sweet nothings until I melted. She laughs all of the time too. Sometimes a sarcastic guffaw and other times a deep belly laugh or girly giggle. All of us, Meg, Craig and I seem to have focused so much of our goals on getting Ava to laugh, it is such a wonderful sound.
Other communicating strides have been simple sign. Like slapping the ground or table twice for more. Kiss for yes. Shake head no (and really mean it) pull hair for nap, tap ear for what's that sound and my personal favourite; tap chest twice for I love you. (I taught her that).
She has us all wrapped around her little finger. :)
(Side note: I read the book Jesse this month. Happened to pick it up accidentally. When I realized it was a mother's story about bringing up a child with CP and he passed away (from seizures) in his teens, I felt it was not a good idea to read this book. Then I read how Jesse communicated in kisses and felt like I was reading about Ava. Jesse and his family had to fight so many battles. He turned into a beautiful poet and person, able to communicate through computers. His mother's writing is honest and hits very close to home and despite the sad overtones I recommend it for any mother going through the challenges of raising a child with a severe disability. (can find book here) http://www.marianneleonecooper.com/site/
Diet wise I was worried for a while. She kept falling lower and lower on the percentage scale with height. 95 (at birth) to 25. All her team told me it was no worry but really, when is it time to worry? When she falls to the negatives? The dietitian added protein and she shot up 4 inches. She sits now, happily in the 50th percentile (phew!)
Last year (it feels) at this time I was always worried about everything; seizures, global delay, what the heck was causing this all.
Today, I just feel content. Happy, that Ava is with us. Happy that she is moving forward (even if it is at a snails pace) Happy, that she wakes up every morning excited and giggling to meet the day.
I know tomorrow worry may come again with no warning but I'll take this feeling for now, because it feels good just to enjoy the simple pleasures that my family brings to me.
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