Eyes

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.

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.

Gili sits, laughs & Physical Therapy Video

Video of Gili in School

Haven't had much time to write, but here is video I made for my family:



Rotem plays about two toys with her each session to encourage her to play and explore objects in ways besides putting them in her mouth.  She also feeds Gili about once a week.

Lihi is working with Gili in the dark room.  Mostly because it is quiet.  She is trying to encourage her to voice or sign that she want more or to do something again, so basically they have fun and then pause and wait for her to do something.

The last two weeks I also sat in on Gili's reflexology session with Elena.  She really loves that, and Elena was showing me things also.  It is very interesting.  She showed me the zones of the foot and told me about doing things on separate parts of her body at the same time to work both hemispheres of her brain.  For instance, she might rub her right foot with her left hand.  Elena also plays classical music during the session, which Gili seems to really enjoy that.

I bought Gili a Baby Mozart CD, which she loves, but I'm ordering a better mix of real classical music.

Another occupational therapist, Rut or Ruthi, is filling in for Rotem while she is on maternity leave.  I also wanted to write the names of other staff before I forget:

Vered is the principal/therapy coordinator; she will decide what class Gili will be in next year.  Sharona runs the office.  Kedem is the social worker; she can help us get what we need.

Shelly is one of the classroom helpers who was working mostly with Gili.  She is so in love with Gili and takes special care of her, including all the non-lazy precautions to prevent her diaper rash.  She is tall and outgoing, speaks English, and is also a student, but not working in that capacity at the school.

Hadas is Gili's helper now.  She seems much younger and soft spoken.  I saw her feed Gili and it seemed to go just fine.  I just don't see her cuddling and kissing her and telling her, "who loves you the most?" like Shelly.  But I don't think I would do that if the kids mother was in the room, either.  Shelly still plays with Gili when her main responsibilities are sleeping or with therapists. 

Gili clapped spontaniously a few times in the last week.  I started working on that with her since I noticed she could keep her fists open.

Parent - Teacher Meeting

We kept Gili home yesterday to rest.  The previous day she had a terrible spell of throwing up and we almost went to the hospital due to dehydration.  She was thrilled to be back at school today.  She was excited in the cab and was just glowing to see her teacher and helper.  Adina was kissing her and Gili was laughing and so happy. 

This morning we met with Gili’s teacher, three therapists, and the therapy coordinator.  The overall consensus was that they like working with Gili very much and they all seem optimistic about her being able to reach the goals they have set.  Her teacher, Adina, said she would translate the report for me, but for now I will try to remember as much as I can. 

One exciting thing for me, was hearing that Gili clearly likes being with people she knows.  She shows preferences for people and activities, and smiles, laughs, and cries appropriately.  Before today I thought that she was pretty happy to go to anyone who held her securely, and that she would smile or laugh at almost anything.  I don’t want it seem like I want to be upset, but it is very comforting to know she cares about what is going on and who she is with.

Adina works with her vision, eating, and is generally in charge of her daily care.  We agreed that Gili is making progress with her looking and eye contact.  The teachers also noticed her “nystagmus” (jiggling eyes), and now I know what it’s called!  The coordinator said they would give me a letter for before she sees the eye doctor next time so they will have to pay attention and answer questions.  Adina said that Gili does much better in the dark room when they have a light focused on only one thing.  They said that her eyes seem to be okay but that there is a problem with the connections in the brain.  Maybe in a regular lit room there is too much stimulus, but in the dark room she can focus.  I have noticed in the past that she enjoys being in the dark, whether it’s alone in her crib talking to herself, listening to Dad play guitar, or on the floor in the dim living room while I go on my computer.  It made me think that maybe we should try feeding her in the dark with just a dim light on the food. 

Gili working with Lehey

Lehey (I don’t know how to spell it, pronounced Lee-hee) is her communications/speech therapist.  They seem very happy with her progress using a voice output communication aid (VOCA).  Lehey will record herself saying something and then Gili pushes the button at the appropriate time.  They assured me that she’s not just pushing it randomly; she’s doing it appropriately in response to the game Lehey plays with her.  They also practice taking turns vocalizing, like a conversation.  She is working on a hand motion for “I want” and nodding for “yes” and “no”.  Lehey talked about the importance of exaggerating and describing Gili’s wants through the day, like “yes, you want the bottle,” and helping her nod her head.  I went into the meeting thinking Gili had no communication skills at all, but I was impressed by Lehey’s optimism.  She seems genuinely excited about working with my daughter. 

Rotem is her occupational therapist.  They work on playing appropriately with toys and exploring objects in an appropriate way (with her hands and eyes, not mouth.)  Before today, I was so happy that she was finally able to hold things with both hand and bring them to her mouth, I didn’t really think about her playing with things.  They play ball or work with several similar objects like blocks.  I think I should try challenging and engaging her more at home, rather than just give her something to chew, let her roll around, and message and stretch her limbs. 

We also discussed her eating.  In the last few weeks she has made progress with simply not rejecting food.  Before that she didn’t even like seeing her food tray and would pull away when she saw the spoon coming.  Now she will actually eat and keep down a few spoonfuls of solid or semi-solid food.  She will also bring small bits of fruit or vegetables to her mouth herself. 

Yael is her physical therapist.  They meet at least twice a week.  She is making progress in sitting unassisted for well over a minute and sitting well with minimal assistance.  The next goal for her is to get herself from a lying to sitting position and to sit well enough to play with something with one hand.  Wouldn’t I love to see that!  I think they mentioned possible balance issues, but mainly weak muscle tone in her trunk. 

We are also borrowing a baby walker for our home.  When she grows out of it we can talk about applying for a more serious walker/gait trainer.  Last night, I was watching videos on YouTube of kids using different kinds of walkers.  I was getting pretty excited that it looked like something Gili could use, but Yael thinks she has the capacity to walk unassisted!

My overall impression was more optimistic about her progress.  I am constantly impressed by the love, care, and attention she gets at the school.  My husband is finally starting to get that she is not going to recover and turn into a normal kid.  He told me that he just realized that Gili really is special and will probably always be in a special class.  He thought her vision was fine, so the teachers saying that they felt that there was a problem with the connections in her brain made an impression on him.  He said that he didn’t realize the extent of her neurological problems.  He also paid particular attention to her eating issues.  They said that it will only get harder to switch her from the bottle as she gets older.  They talked about giving her fewer bottles so she would be hungrier for solids

I was invited to music therapy and to see her work in the dark room next week, and to sit in on an occupational therapy session on may 16.  I am anxious to discuss her new developments with the Neurologist in about a month and a half.   I’m been concerned about some behavior that might be related to a seizure or her yet to be diagnosed cerebral palsy. 

Water Therapy Video

Talking

I forgot to write in my other post:  Gili started saying "bababa" last week.  Until then she has been talking without any consonants, as if she had been raised by whales.  We still enjoy her happy screeches and other amusing noises, but this step toward normal baby communication development is quite exciting.

I also wanted to mention that Gili will be a big sister when she is about two weeks shy of her second birthday.  In the beginning I didn't care at all about gender and just wanted a healthy baby, but after seeing that healthy looking ultrasound, I started thinking that I'd like a boy.  Big Sis and Big Bro have made their preference clear that it should be a boy.  I would like to have two boys and two girls, but I would also like there to be less comparison between Gili and her little sibling.  My older kids are 19 months apart and people would ask if they were twins.  (If you knew anything about baby development or opened your eyes, they obviously weren't.)  Now I suspect I will get comments about how close in age Gili and the baby are.  People won't believe they are two years apart.  If I have a boy it will seem less strange if Gili's little brother is bigger than her in a few years.  But if we have a girl, I think Gili will look very frail in comparison.  Well, it's not up to me and I obviously have too much time to think.  G-d willing, a healthy baby!