Sunday, August 14, 2011


Quick update:
Gili had an exam today, I think they call "refraction."  They just held different lenses up to her eyes and flashed a light around.  The lady who did the exam (not a doctor) said Gili does not need glasses and her "squint" (strabismus, cross eyes) is small enough that she does not need surgery at this time.

Tuesday, August 9, 2011

Meeting with Developmental Specialist and 21 Month Update

In her car before her first hair cut
Today we had an appointment with our Child Development Specialist/Neurologist, Dr. Inbar.  He is retiring soon and Dr. Tammy Shteinburg will be taking over the department and Gili’s file.  Gili was not feeling well today, she had a rash and an ear infection, but I don’t think it changed anything.  He noticed major improvement in her awareness and reaction, but said she is still obviously physically retarded.  He checked her reflexes, which I think passed.  He lifted her up straight, probably to see if she would put her feet down to support herself, and then put her down to all fours to see it she would reach out to catch herself.  It appeared that she failed those tests. 
Dr. Inbar is retired from Schneider Children’s Hospital to be a full time research professor at Albert Einstein College of Medicine, in the Bronx.  He said we should invite him to Gili’s Bat Mitzvah.  He expects that by then she will walk and talk and be more independent, but she will always be mentally handicapped.  None of this surprised me, though my husband doesn’t like to hear it.  I was happy he said she would talk.  He bases this on the fact that she is vocalizing now – “ababa,” “ticka-ticka”…  He said she has the signs of Cerebral Palsy.  They don’t diagnose before two years old and he seemed to say there is a chance she could improve.  I’m doubtful.  I think she’s had the signs for well over a year and that’s unlikely to change in the next three to six months.  He predicts a 50/50 chance that she will walk before her third birthday.  That is a little more in line with what I expected.  I figure it’s was time to throw the “she’ll probably walk when she’s two” predictions out the window.  If she is not walking at three she gets an additional stipend from the government to help with transportation and more.  I said, “I don’t want it,” meaning, I’d rather her be walking.  I think 50/50 seems pretty accurate.  I have trouble seeing her walking well at three.
I think she looks like a big girl here
Gili has made incredible progress in the last six months.  She can now do from laying down to sitting independently!  It has made such a big difference in the way she gets around and plays, and I never tire of watching my big girl sit and play.  Now she rolls over, sits up, looks around, figures out where she wants to go.  She can really get around the house.  But she doesn’t follow me like my other kids did.  As soon as Big Sis could crawl, she could find me anywhere in the house within seconds.  Gili doesn’t seem to care much.  She still likes being under things, but she also likes exploring new places.  I put her toy bins in a place where she knows to find them and she manages to get out what she wants and make a great mess.  She also has made improvements in looking for things that have dropped or been taken away.  Today I saw her reaching up and behind her for her butterfly toy hanging from her stroller.  I was really impressed that even though she couldn’t see it, she knew it was there. 
She is still happy playing by herself for a long time, and she still enjoys the dark and quiet of her crib, even if she’s not napping.  She usually wakes up happy and doesn’t call for us.   

We haven’t been working too hard on feeding her, but since her school ended Monday, we need to work more on all the enrichment she usually gets at school – eating, standing, teeth brushing… Oy!  I’m glad it’s only three weeks.  I like when my job is primarily love and hugs and kisses.  Plus I’m a big, fat, overheated, tired, waddling 31 weeks pregnant.  As you can see from the last video, she is no longer opposed to putting food in her mouth.  But she still gets almost all her calories from bottles of baby formula.  We didn’t discuss her eating or my suspicion of seizures with Dr. Inbar.  I wish I remembered to ask about the eating because he probably could have set us up with a nutritionist in the hospital.  Dr. Inbar recommended we see an ENT, because Gili always has fluid in her ears, and an orthopedic specialist in the next few months.
She found her toys!
I hope that Gili has the same teacher next year.  I also like her helper, Shelly.  She speaks English and I can tell she is crazy about Gili.  (As am I!)  According to Lihi, Gili has started to make a sound meaning she wants to do something again.  I haven’t heard any purposeful vocalization.  The closest I get is her opening her eyes wider when I show her a bottle.  I haven’t gotten any nodding, reaching, or vocalizing.  

Below is a silly video of Gili batting at a big ball.