Things to come

Last Friday Gili bit me hard enough to draw blood and make me scream in public. Yesterday she crawled (so happy she's finally crawling!!) into her new favorite place, the bathroom. She was sitting/laying right on the other side of the door blocking it. I gently pushed it open, but somehow hurt her and I couldn't calm her. She was flailing around and I had to bring her to my husband to help. I'm petite, less than 5 ft tall. I knew that we would have bigger problems as she got bigger, but it's really becoming reality now. Maybe I should join a gym, lift some weights, and prepare for Gili's future needs.

I had a talk with my kids today. They only want to help with their oh so cute baby brother, and not with their strong, heavy, squirmy, snotty, bitey sister. I told them how we are such a special family, how G-d put Gili into our family because he knew we would be a good family for her and he knew they could be a good big brother and sister for her. I told them how we should feel honored that G-d gave us such a special sister and they need to step up. I hope some of it sticks. I could really use the help.

IMAGE LEFT: I take a lot of pictures of my kids and I usually only post the ones where Gili looks less "retarded." But the truth is that her eyes are usually crossed, her fisted clenched, and her jaw in a strange grimace. I think it's probably getting obvious to most people on the street that she is "special." So I might as well start sharing pictures of what she looks like most of the time. Beutiful blue eyes, porcelain skin, and all the moving parts just slightly "off kilter." So on facebook I might share the most "normal" looking split seconds on film, but this seems like a good place to start sharing the other 95% of her life.

Crawling, Eating

So much to say, so little time! Gili started crawling this week! Like, more than two "crawls" at a time! It's hard to catch her on film, but I got her to crawl to the computer with my parents on Skype.

A couple months ago Gili's teacher sent home her box of formula because she is eating enough real food during the day. She still drinks a few bottles at home but her progress is incredible. My husband has been especially helpful. In the past he didn't think the mess was worth the experience, but in the past six months he's taken much more initiative in feeding her at least one or two real food meals a day. He makes no secret that she is his favorite person and #1 priority. Little Bro is still crazy about his dad, but we do sometimes get annoyed at getting only the leftover time and attention. Little Bro likes to be held ALL the time, so I haven't had so many opportunities to give Gili the masages I used to.

Gili was officially accepted to a new school, "Akim," for the next three years. It is smaller and doesn't have a pool, but it seems like a nice place. Not that we have much choice.

I think we got to the point where most of the time we go out people can tell Gili is different. I will eventually quit not posting pictures where she looks "retarded." Hey, a quarter of the pictures on facebook have "red-eye," why should both her eyes have to point the same direction?

We took a real family "tiyul" during Passover. We went to a local national park with a couple friends. Gili enjoyed the breeze and the picnic. My husband and I were exhausted. We took the little ones home and let Big Sis and Big Bro finish the tiyul with our friends. They are big enough to take a cab home at the end of the trail. We had to walk back to the bus stop to take the bus with the double stroller.

Now we are looking into bed solutions. Little Bro is ready for a full size crib, so instead of buying a second crib, it makes sense for us to look at longer term solutions. We think the best solution would be to move Gili into the bottom bunk of the bunk beds we have and use some sort of mesh to keep her safe. Then we can move Big Sis (or maybe Big Bro) into the guest room whenever we don't have guests. Oh, how I want a bigger apartment. I actually looked at a lovely little place, but that's another story. We're staying in our 2.5 bedroom apartment at least until the summer. The "half" we call our guest nook. It's sort of a balcony/hall. It gets too warm and too cold for comfort. But I think Bog Sis can handle it. It already has a bed and dresser for when one of our parents visit.

TSA helpline for travelers with disabilities

Below is a letter I was forwarded that I thought was worth posting.  Here's to more accessibility and understanding in all manners of local and international travel!

Forwarded from MD Family Networks:

The Transportation Security Administration has launched TSA Cares, a new helpline number designed to assist travelers with disabilities and medical conditions.

Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. TSA Cares will serve as an additional, dedicated resource specifically for passengers with disabilities, medical conditions or other circumstances or their loved ones who want to prepare for the screening process prior to flying.

The hours of operation for the TSA Cares helpline are Monday through Friday 9 a.m. – 9 p.m. EST, excluding federal holidays. Travelers who are deaf or hard of hearing can use a relay service to contact TSA Cares or can e-mail TSA-ContactCenter@dhs.gov.

If you would like to make advance arrangements for screenings at airports, travelers can contact TSA using Talk To TSA, a web-based tool that allows passengers to reach out to an airport Customer Service Manager directly, and the TSA Contact Center, 1-866-289-9673 and TSA-ContactCenter@dhs.gov, where travelers can ask questions, provide suggestions and file complaints

In this busy travel season, you are invited to please share this widely.

Happy holidays,
Peggy
Peggy (Margaret V.) Hathaway
Public Policy Manager
National Association of Councils on Developmental Disabilities
202-506-5813
202-420-8040 (mobile)
phathaway@nacdd.org
www.nacdd.org

Gili is a big sister!

"Little Bro" is now six weeks old. He's having a tough time gaining weight, which I didn't realize right away because I couldn't imagine having two "special" kids.  G-d willing he's just struggling with the viruses the kids are bringing home and he'll catch up soon.  In the mean time I'm weighing him at least twice a week, giving him bottles of pumped milk, and some formula.

Yesterday Gili visited the eating clinic in Schneider Children's Hospital.  My husband took her because I needed to stay home to nurse and pump.  He felt it was a waste of time.  They let her make a huge mess with the food and decided that she does not have a swallowing problem, but she has a very high palette.  They think that having her be more hungy will help her eat.  They prescribed a vitamin to add to her bottles and recommended making ehr bottles more concentrated - one scoop in 50 mL of water instead of 60 mL.  We will go back in three weeks with Gili's occupational therapist, Ruti.

Today we celebrated Gili's second birthday in school (only a month late)!  She had a rough night and was pretty tired and dazed during the party.  She's been frequently waking up in the middle of the night and crying hysterically for up to an hour.  She enjoyed her party at home with the neighbors more.  She was more in the moment and really enjoyed all the attention and happiness.



Gili's teacher, Adina, and I have both noticed that her cross eyes seem to be getting worse.  We might try to start seeing a doctor in the local clinic because we're not that impressed with the optical care Gili gets in Schneider.

Gili's school, Eliya, only accepts kids up to age three if their main issue is not vision.  In January we will begin the process of getting her into the special needs elementary school system.  First she will see the child development specialist in Schneider, who will write a developmental report.  Then we will have a meeting with committee members to decide which special needs system she will be in.  If (when) they determine that she has a global delay, we will have another meeting in Jaffa-Tal Aviv.  They will designate her a level of "retardedness" and determine which school she will go to next year.  It seems the most likely scenario is that she will go to "Akim," a special needs elementary school in another neighborhood of Petach Tikva.

So, what has Gili been up to? She is putting food in her mouth by herself, but she usually drops or spits out most of it.  Basically, she just drinks baby formula.  She can pull up to her knees, and I hope that will soon turn into pulling up to standing.  Adina says she's started responding to her name, but I haven't witnessed it.  It's slow going, but we love her!

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