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!

Spring is Here

I think I owe you an update.  I went to Gili's school in February to see her physical and water therapy, but I didn't have the energy to post about it.  Below are the pictures from her physical therapy.  You can see her leaning on one arm, sitting, and playing stand-up sit-down.  (I will post video from the water therapy VERY soon.)

 

And why haven't I posted in so long? Why didn't I have the energy to post everything I was planning to write about her therapy when it was fresh in my mind? There's a baby in Mommy's tummy! From every logical perspective I thought it would be nice to give Gili a sibling to play with, and maybe take care of her. Big Bro and Big Sis are very close to each other and have limited attention for Gili, but she needs a buddy, too. I just never thought I would be so sick!  I hit rock bottom when I went to the hospital last Saturday night, and even Sunday and Monday I was no better.  Finally Tuesday my usual anti-nausea started working again (prescription Zofran) and today I was out of bed!  I actually took a walk!  My mom is coming on Tuesday and I hope to keep up with this level of energy so we can get out of the house and have some fun. 

I'd like to say, "enough about me, let me tell you about all the new things Gili is doing!"  Unfortunately, there's just not much happening.  I guess I could say no news is good news.  She's been sick a lot, but nothing serious.  She hasn't been back in the hospital.  Things are going smoothly.  Once in a while her teacher will write in her journal that she ate a spoonful of something.  I think they try to feed her a little every day.  That may be the area where she is most delayed, at least compared to her delayed peers in her class.

Lil Bro (or Sis)

So back to me.  I wasn't so sick when I was pregnant with Gili.  I took a few Zofran, was tired, and had other yicky physical pregnant stuff, but I got out of bed every day.  Besides having a bad sinus thing and H1N1 swine flu, life went on.  I graduated college and passed three of my four CPA exams all while pregnant with her.  Big Sis was another story.  I was in and out of the hospital most of my pregnancy with "hyperemesis gravidarum."  I had a little break in the middle, but I was pretty much in bed for at least seven months of my pregnancy.  I was a little better with Big Bro.  And when I was okay with Gili, I thought those awful pregnancies were behind me.  I was more worried about having another CMV baby than I was about being in bed for eight months.  Man plans, G-d laughs.

Before I got pregnant I was planning to write a post about all the considerations of having another baby.  Everything from Gili being so delayed, to the chance that the virus could still be active, or G-d forbid, reactivate.  In Israel they do two blood tests for CMV in the beginning of pregnancy.  One shows if you've been exposed (positive for me, of course) and the other (from what I understand) shows if it is active.  Thank G-d, that was negative.  So I just have to trust.  I will say, however, that my friend, Ruth, had similar results and has a son around Gili's age with congenital CMV.  We met through the CMV registry and when I am writing more, I would like to share some of the things we have talked about. 

Ruth and I met in person several months ago when she was getting a second (or third or fourth) opinion on cochlear implants for her son, and I hope she will write a guest post about everything she learned.  Her son was only slightly hypo-tonic, but basically not delayed, just legally deaf.  Gili has another BERA in a month, but unlike most CMV kids, her hearing is not much of a worry.  So, together Ruth and I have the full CMV experience!

Were you wondering what happened the the ugly logo sketch I shared in my last post?  It has been "professionalized!"  As soon as I am able to think about food without... well you know... I can't wait to get back to blogging and give away some of the awesome aprons I made.  

Gili's Got Skills

My husband and I and Gili's teachers are all very happy with her progress in every area except eating.  We do miss her.  My husband dropped her off and came back home and told me it's not fair that they get to spend all day with her and he has to go to work.  But for her sake, I know she's getting what she needs.  They never use an excuse to strap her in a chair or a stander.  Unless she's sleeping, her teacher, helpers, or therapists are always interacting with her. 

My husband bought a guitar a couple weeks ago and he started playing for Gili in the evenings, after the kids are in bed.  He sits on the bed in our unlit room playing in the glow of his laptop screen.  She lays next to him on our feather duvet and looks like she's in heaven.

On Tuesday night we were talking to my grandparents.  Yes, my 79 and 80- year old grandparents have a webcam!  We were at the table with Gili on my lap, my husband still working in his "office"/front wall of our bedroom, and the kids were finishing up their dinner veggies.  We were talking about Gili eating.  I hold them she "tasted" four spoonfuls of baby food fruit in school, but doesn't really eat anything, and then I handed her a green bean.  And guess what!?  No, she didn't gobble it all up and say "thank you for making this for me, Mommy," like Big Bro.  She passed it between her hands!!  I started screaming.  I know, she's 14 months, so I can't share this excitement with most of my aquaintances.  But it was like a dream where your one-year-old talks.  I was just screaming.  "Look!  Look!  She's doing it! Oh my G-d!"

Her teacher says Gili can stand with just a little support on her hips.  She can sit/balance upright briefly. And, I noticed that I can hold her on one his and she can hold her self up!  Physically, I see great things and I am started to believe Professor Amir that she could walk at two.  But I wish I knew how much she understands.  Will she ever have normal friends?  Can she marry someone I can be proud to call my son-in-law?  It's all a mystery.  For now, we just love her so much.

A page in the life of Gili's Mom

I have so many things - ideas, to-do's - swirling around in my mind today, I can't seem to stay on task.  I thought I would take a break and write some things down. 

My work for the free-loan fund is slowing down, because I am slowing it down.  I'm using as an excuse the fact that we haven't yet received the primary donation from from the women who initiated the fund with her end-of-life savings.  Her daughter finally got her death certificate, but there is a lot to be done.  When we get the money I will need to get my act together.  I was thrown into this responsibility without knowing it, but I want it to succeed. 

This week I am leading an English speaking women's class in the book of Nechemiah, chapter 7.  I just started studying today.  The wonder of being a stay at home mom... I can do these things in one day.  It's great material.  The power of prayer, the importance of ancestry, the value of place.

On top of my real responsibilities... (There is laundry spinning around my washer and dryer and a pile ready to be folded on the couch.)  My mind has been flooded with ideas for my public blog "Cooking Outside the Box" at nonrecipe.com.  I formated and printed a calendar through February, and wrote a schedule of all my blog ideas and when I want to post them.  I post 4-6 days a week.  And I have/had SO many ideas.  But last night the paper got lost and I had a bit of a freak out.  And then another pouty episode today when even the calendar file on my computer could not be opened!  Yes, I could eventually reconstruct it, but don't I have better things to do?  At the same time, an important form for my son's hearing test was lost.  I suspect the kids began coloring on it and then my husband thought it was trash.  I wasted time and stress trying to replace the form half an hour before his appointment. 

More blog news: My cooking blog was awarded the "Stylish Blogger Award."  Yes, it's more like chain mail than a prestegious award, but it's still cool that someone thinks my blog is worth recognition.  And maybe I'll get a few hits.  I also started posting on reddit.com, which has gotten me a few hundred more visits.  I would love to post this blog, but then my husband would see it.  If anyone want's to post for me, I would very much appreciate it.  Pick your favorite post, then send me the link on reddit so I can vote it up.  Or post of facebook, or share it with your friends who might be interested.  There are lots of sharing options in the upper left of this page.

To publicize my cooking blog I was thinking of making some stylish aprons with the name of the site printed in some unique way on them.  I'm having fun with the ideas and spending way too much time thinking about it, and maybe too much total time and money on a hobby that may never make me a penny.  But I like to sew, and it would be so cool if it bought my blog some more followers and then someone in the world was wearing something I made.    I've also started getting more into photographing my food (see pictures below). 

And, "How's Gili?" you may ask.  She went "swimming" this week!  I hope one of the next two weeks I can go take pictures.  She's doing so great in school!  I don't know why I'm not getting more done around here, though.  Why am I sketching aprons when I have so much mending to take care of??

And with this post, my anonymity ends.  You still can't search for my name or my daughter's name and get here; but, if you're reading this, you can figure out who I am.  Just don't tell my family.  I'd like to feel free to share my honest hopes and fears without freaking out my friends and relatives. 

Thanks for reading!

My photography set-up

Sabra

I was discussing with a friend of mine the possibility of writing a guest post for her well read blog A Mother in Israel.  I started writing something when I was up very late at night.  I don't know if it's worth posting, or if her blog is the right place, but I thought I would leave it here in the mean time:

You’ve heard the term Sabra?  It’s Hebrew for the cactus fruit known as a prickly pear and the term is used to describe native Israelis: prickly on the outside, sweet on the inside.   It doesn’t take much to uncover the sweet, friendly, inquisitive fruit of the Jewish people.  This makes social encounters much more interesting, especially as the mother of a special needs child.  Once you’ve made a connection with someone, (“You’re from America?  I have an aunt in New York.”  Or, “Have you been waiting long? Me too.”) it’s fair game to ask questions like, “How old are you?” “Where do you live?” “How much do you pay for your apartment?” and “What’s wrong with her?” 

The truth is, I prefer this candor to the alternative I might face in America, chatting to a mother while wondering if she’s noticed my baby is different.  I also prefer this to other people who don’t realize what a child my daughter’s age is usually doing and try making naïve small talk.  It happened more when my daughter was a little baby.  Strangers would say, “she’s so big,” or, “she’s so aware/interested,” when she was particularly not those things.  I realize these can be generic compliments, but it’s such a stretch from the truth, it’s hard to be gracious. 

In Israel there is a beautiful and annoying concept of children being raised by the community.  It is nice when you’re busy nursing a baby at the park, your older child falls down, and another mother runs to help.  It is annoying when your son is crying, not because he fell off the swing, but because a stranger is talking to him.  It is irritating when strangers are telling you to add oil or honey to your baby’s bottle to fatten her up, when it’s enough of a challenge to get her to suck and swallow.  It is aggravating when strangers keep stopping you to let you know your baby’s hat has fallen over her eyes, when you want to reply, “She likes it that way, she doesn’t see much anyway.”  (Try taking the hat off when it seems nice warm, and every bubbe you pass will lecture you about bundling up the baby.)  And it is infuriating when medical professionals and caregivers think it is okay to ask, “Why don’t you know Hebrew yet?” And you want to cry and say, “I spend half my week sitting around hospitals and doctors’ offices, when would I have had time to learn Hebrew?!?  And you of all people should understand what I’ve been through!”

Is it Contagious?

The last few times I found myself tossing and turning in bed thinking about Gili’s illness, it had nothing to do with big long-term questions: Will she walk? Will she have friends? Will she have a satisfying life?  I’ve been worrying about the questions on other people’s minds. 

At the end of the summer I visited a potential school for my daughter.  We got a ride home and the conversation eventually turned to CMV (not a common topic when I first meet people, but it happened.)  The mother asked if my kids had it.  I very nonchalantly shrugged and said, “I don’t know, probably.”  Gili got it from me; I probably got it from my kids.  If one has it, I can’t imagine they don’t both have it.  It was only that evening when it hit me that the mother may have been very concerned about having her daughter in class with my daughter.  My daughter was riding home sitting in between her little girls and it was only in retrospect that I realized her concern. 

Now we are waiting to find out if Gili will be allowed to do water therapy.  She needed a letter from Professor Amir saying she wasn’t contagious.  He wrote what I worried he might, true but no help to us: all young children may carry CMV.  It is understandable, but frustrating that she is being treated this way.  She is less likely to be contagious than your average preschooler, and yet because she was born with it, they insist on taking extra precautions.  

CMV is like AIDS when you compare it to how misunderstood it is about contagion, and yet it is more like chicken pox in its risk.  Much like chicken pox, you’re better off getting it when you’re young.  Especially if you are a woman, better to get it long before you might get pregnant.  So why are we so worried about one child who may possibly be contagious?  It’s usually only dangerous if you’re pregnant or close to getting pregnant, in which case you should be careful off all kids.  Just use proper hygiene!  Wash you hands, don’t kiss their snotty nose, and don’t drink their pee!  And yet the teachers have no problem kissing Gili on the face and then, I assume, also kissing other kids on the face.  But they’re worried about a chlorinated pool??

On a brighter note:  Gili sat (balanced) unassisted yesterday!  She sat long enough for me to get my camera and snap a few pictures.  We were so giddy with excitement.  I was having a Mommy group over who didn’t know me so well.  One mom said she was surprised that we were still excited with the third kid.  Were we ever!