The Race is On

Last week Gili started pulling up to a standing position all on her own. Now she is really getting around. Lil Bro started pulling up to a stand yesterday. Now the race is on to see who will walk first!

I had sort of thought once Gili got her AFOs she'd take off. It seems quite the opposite has happened. To begin with, she doesn't seem to like the AFOs very much. I suspect they make it harder for her to stand. I think a lot of what my husband thinks is strength is really stiffness related to her cerebral palsy. In order to put on the AFOs, Gili's foot must be flexed more that 90 degrees. The lady who fit her AFO's explained to me that bending her knee with help her ankle bend. It's called total flexion. The opposite, which is her usual standing position, is total extension, with the leg straight and the toe pointed. I think that the AFOs cause her foot to flex, which releases the hypertension in her legs, which usually helps her (or forces her) to stand. So that's my theory.

I also can't find any snug, smooth, long  socks to fit with the AFOs. I'm planning to order AFO Interface Ankle Compression Socks.

Just a couple other things I've been meaning to mention:


Please do not repost this image

At Gili's appointment with the new neurologist, he asked about her microcephaly. I said that some doctors said Gili had borderline microcephaly. He measured her head and said she was so many (don't remember the exact number) standard deviations from the mean, and by looking at her it's obvious that she has microcephaly. My husband and I gave each other a slightly bewildered look to say, "Her head is obviously too small?"

Gili also has pectus excavatum. Have I mentioned that before? I took some pictures of my little ones having fun in the bath, so I thought I'd share a picture to show her chest. I think at this point we've decided not to see a specialist and open up a whole 'nother can of worms. Though, personally I'd like to know if it's affecting her breathing or anything else. Usually it's just cosmetic, but hers is pretty severe. The doctor we would see about it is a surgeon, so my husband said, "no way." I just thought I'd let you see what it looks like.

If you look closely at the picture, you can also see the redness on Gili's cheeks. Her cheeks, chin, and the top of her nose are extremely chafed, dry, red, and calloused. I think it's a combination of drool and scratching herself when she chews her hands... another problem on it's own.

Speaking of chewing... I set up an Amazon Carousel to feature some things we like. Except for the iPad and LeapPad items, I own and love all those things. We especially can't live without the Graco Electric Nasal Aspirator and Massaging Teether.

Gili's first AFO's

Gili got her first pair of "tzadeem" (meaning steps or steppers) today. They are pink with butterflies. She will wear them for half an hour today, twice for half an hour tomorrow, and work her way up during school hours until next week she wears them home and eventually keeps them on all day. She looked a little uncomfortable in them, but her assistant, Nina, said most of the kids do in the beginning. Here are pictures of her with her teacher Adina.

Nina is holding an iPad to entice Gili to lift her body up. You can see Lil Bro in the bottom right. After the AFOs come off each day, they will put alcohol on Gili's legs to help dry or toughen up the skin to make it easier for her to have the plastic on her legs all day.

The company that made Gili's Ankle Foot Orthosis is called Stride. Vivienne (a native English speaker) came to Gili's school to fit her last week. Then she came back today to try them on and finish them up (cutting off the extra toe room.)  The physical therapist, Anna, will give use further instruction next week so we can make the most of them over summer vacation.  Now I am going to order some special shoes that are specially designed for use with AFOs, called Hatchbacks, and also get her some special socks.

Above is a picture I took at the end of year party of Gili's teacher, assistants. and physical therapist.

It's just autism

We just came back from an appointment with an expert pediatric neurologist, Dr. Arie Ashkenasi.  Lil Bro was crawling in an unusual way, so the pediatrician recommended that we see him to rule out CP. I figured, since we’re already paying for an expensive cab ride, he should also see Gili.

It was nice to get a second opinion and he was a very nice and thorough doctor. Just a few new things… He said her movements and mannerisms were consistent with someone with an autism spectrum disorder. I guess before now I didn’t even think she was high enough functioning to test for autism, though I did think about whether she would be considered to have it. So the answer is, “yes.” And now we can add one more diagnosis. If I lived in the states where I might talk to people who don’t know what CMV is it might actually help to be able to simplify her diagnosis as having cerebral palsy and autism.

Because she wasn’t tested for CMV until she was 5 weeks old, we will never know beyond a reasonable doubt that she has congenital CMV. Therefore, Dr. Ashkenasi wants Gili to see a genetic counselor to look at her and test for any other odd possibilities like Angelman Syndrome.  On paper Gili has all the symptoms of Angelman, but she doesn’t look like the other “Angels.”

Dr. Ashkenaz wants Gili to get a “sleep deprivation EEG” to get a better idea of what’s going on without artificial sedation. She already had one EEG that found nothing and one that found something odd, but nothing definitive.  He also wants her to get an MRI. (Finally!) I’ve wanted her to have an MRI, but Professor Amir said there was really no point. And maybe he’s right. But I can’t help wanting to get some idea of what it looks like in her brain.

So, what else is new? We’re all excited for Gili to get her first pair of AFOs tomorrow. Gili can stand by herself holding on to something and we can’t wait to see her walk. Her eating is improving. My mother-in-law found that if she puts small  pieces of food in Gili’s fingers, Gili can feed herself.

Gili was very “bitey” yesterday. She tried to bite Lil Bro a couple times. She grabbed his head in her hangs and was lunging over him like a bear about to chomp down on her prey. He’s no worse for wear and will eventually learn to watch out. Now I’m going to give Gili her pre-bedtime Melatonin.

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!