Wednesday, November 19, 2008

The latest on Emily

Emily has been doing very well. She is continuing to make progress with her physical skills. She is tolerating more tummy time and lifting her head up while she's there. Her head control and trunk control are improving when practicing sitting, and she's been having alert/"playtime" consistently between 1pm and 11pm almost everyday. She is sucking on her fingers and hands more, and will even tolerate my finger, a wash cloth, or an oral swab in her mouth sometimes. Her spasms are happening regularly once or twice a day, which is very good for her. The doctors' next recommendation is to start the ketogenic diet, which for Emily would be a ketogenic formula through her gtube. It requires parent classes (I took the first one already) and a 5 day hospital admission to formally start. And with Emily's low blood sugar issues and high calcium issues, she will be watched even more carefully. The doctors seem to suggest that the keto diet has the best chance of working for her. Where anti seizure medications are only 20-30% effective, this diet is said to have a 60% chance. So I am hopeful, though not so optimistic. The percentages given during class were more like 13% of children in the study with IS became seizure free. 13%? Anything is worth a shot at this point. So we are getting our homework ready and hope to get Emily admitted to start in January.

Here she is sleeping so peacefully on her belly!



Working hard sitting during PT (Physical Therapy)
She gets tired or overstimulated very quickly during sessions and falls asleep or closes her eyes when she's had enough.



Lifting her head all by herself on Daddy's chest



Little snuggle bug

A fun one of everyone on the couch!


And the "ghost" pumpkin!

6 comments:

Hope said...

I really do hope and pray the diet works for her. She's so darn cute. Does she still have to wear a helmet? (because her head looks good to me) She looks so sweet Aimee.

Gee-off said...

No, we gave up on the helmet when she was admitted and had such difficulty breathing after her surgery in June. She was expected to stop wearing it in August anyway, and we felt the refittings were a waste of time. We, too, think her head shape is drastically improved.

Daddy Scotty said...

Gee-off and Aimee,

I am so glad that Emily is making progress. She is in my mind frequently. I pray this new diet works wonders for her. You both are awesome parents.

Daddy Scotty H.

Monte & Wendy said...

Emily you are doing so much more!!You make us smile!! We love you and can't wait to see you all.

Love and Hugs,
MeMe and PePe xoxoxoxo

Anonymous said...

umm.. is that a blue valore sweatsuit that emily is wearing in the pic of the kids and Gee? She is 70's stylin!!

Anonymous said...

ps- anonymous is Michelle (who else right??!?!?) at least I sort of figured out how to post a comment!!