Sunday, October 31, 2010

Proud Mom

Gili seems to be making some progress on her own. When I see her on the floor getting gerself in a precrawling position and getting around on her own, it makes me so proud! I don't know if she means to roll where she goes, but she definately seems to bee exploring. I am so proud of what she is doing in the video below. It makes me feel all warm and fuzzy when I watch it. I feel that she might become truly mobile in the next couple months.

Today I took Big Sis and Big Bro to an appointment with an alergist in the hospital. I showed them where Gili gets Pphysical therapy. They were so excited to visit "Gili's hospital."

Sunday, October 24, 2010

Happy Birthday Gili!

I think our hearing went well today.  It was one doctor who spoke English one lady who didn’t, but wrote everything down after the doctor translated it.  Mostly they asked us some questions and confirmed the answers with the letter from Dr. Inbar.  Our appointment time was at and we walked out of the building at . 

Gili was pretty cranky in physical therapy today.  We confirmed that the water wings don’t do the job, and are just clumsy.  We also started a new technique Nili called “Vojta.”  Gili hates it, but I think it seems like a good thing for her.  And it takes a little less coordination on my part than some of the other exercises where I’m trying to balance her in ways she’s not keen on.

I’ve been corresponding with Tracy McGinnis and some other CMV moms through Facebook.  I enjoy knowing what might be in store, even if it’s not good.  I don’t like surprises.  (Even for my birthday, I say anticipation trumps surprise.)  I’m still pretty desperate for contact with other people who can relate.  Maybe when it’s more obvious that Gili is different I’ll start meeting other moms of special needs kids and we can talk.  But now, she’s just a cute little baby in a stroller, except that she’s one year now and still looks like a cute LITTLE baby in a stroller.  But I have no obvious common ground to start a conversation with strangers of special needs kids, let alone the language barrier.  Did I already mention that Gili’s third tooth is coming in on the bottom?  I admit to some paranoia here, but it also looks a little crooked to me.  Well, Tracy confirmed that CMV can lead to teeth problems.  But I still hope it’s paranoia.  It would nice to be wrong about something I’m making “too big a deal over.”  My husband actually found the tooth when I was only looking on the top.  I told him I think it’s is always two top, two bottom, two top, two bottom… He’s said, “Well that’s just Gili.”

Yesterday we celebrated Gili’s birthday by singing and taking her on some playground equipment at the park.  Later, her favorite 7-year-old came over to help sing and dance and the big kids had homemade ice pops and oranges.  Today we had her virtual birthday with relatives.  We decorated the area in back of where we sit at the computer and we chatted on Skype with some relatives.  There was definitely a celebratory atmosphere when everyone sang “Happy Birthday” together.  And Gili loves to Skype and listen on the telephone, so I think it was appropriate.

I'm slowly hinting to my kids that Gili’s different.  I mentioned to Big Sis that Gili was going to go to a school to learn how to crawl and I asked her if she went to school to learn how to crawl.  I saw a baby in the park who was starting to walk holding his mom's hands, and I said, “I bet he's Gili’s age.”  I overheard Big Sis and Big Bro playing school with their dolls and they had a separate school for "laying babies"…babies who don’t walk or crawl.  That gave my husband and I a chuckle.  I don’t know what my goal is when I’m bringing it up.  Maybe I just don’t want to feel alone.  Is there any benefit in them figuring it out now?  They know she goes to physical therapy, but Big Bro is going to have speech therapy, G-d willing, and Big Sis is going to have a few sessions with my therapist to work on some emotional issues.  Maybe I just think that for me it came as a slow realization, and that worked for me, so I think that would be a better way for them, too.  The last time I saw Professor Amir, I think more hit me than usual when he told us that Gili was one of his 5-6 real bad cases.  I starting thinking about Gili differently, and maybe even treating her a little differently.  It was the first time I really thought of her as special needs, and I didn’t like what it did to our relationship.  I think I’m over that now, but I’m sure I will have more moments like that in the future.

Thursday, October 21, 2010

Dog Ate My Homework

Just like the piano teacher who knows when you didn't practice, Nili wasn't happy with my excuses that we were sick and Gili was teething.  My husband found a new tooth on the BOTTOM left side.  Everytime I saw signs of teething I was feeling around on top, and that bottom tooth just snuck right up on us. 

One of the techniques I forgot about was to use water wings (floaties) to hold Gili's arms when we are practicing crawling, and to hold her legs for the standing exercises.  Our main homework this week is to increase the amount of physical therapy we do.  Unfortunately, while I've prioritized PT appointments above all else, I haven't given the same attention to Gili's exercise sessions at hame.  I go to bed thinking, "I'll wake up early tomorrow and clean the house and do all the laundry."  I don't usually put Gili's exercises as the priority for the day.  Maybe that's because I have nothing physical to show for it.  At the end of the day when I'm tired, I earn more points with my husband if he can see the work I've done.  I feel like he won't be so happy if the dishes and laundry are piling up and it looks like I was rolling around on the floor all day, even if it's subconsious.  I guess we both need to work on our priorities.

Nili suggested two 20 minute sessions in the morning, and two in the afternoon.  I told my husband we need to up our game.  One of the consiquences of spending less time on PT at home, is that while Gili's strength and skill is slowly progressing, her stamina would be much inproved if I pushed her past her usually fussy point, which is often a few minutes at home.  You can see from her pictures, what she usually looks like within 20 minutes with Nili.

Nili doesn't seem very confident that the Ministry of Social Services will give us the answer we want after our hearing on Sunday.  She wanted to make sure we wouldn't give them too optomistic of a report.  She's starting to talk about what we will do if we don't get in.  I had a lot more confidence, but she's making me nervous.

Tuesday, October 19, 2010

What Exercises?

I've been neglecting Gili's exercises almost as much as I've been neglecting posting.  I got sick again.  She's been sick.  And I started another blog, a cooking blog, part of embracing my stay-at-home-mom-ness.  Gili has been fussy, but she still likes her jumper, so she's been in there much more than recommended.  I'm feeling a guilty about some of the new physical therapy suggestions we're not taking, so I thought I should at least right down what I remember. 

Nili wants us to roll up towels to simulate the big foam column and have Gili sit on it while we slowly tilt her side to side.  I think it encourages her balance.  She also wants us to try the crawling/all fours position with her knees on a hot water bottle (not actually hot), again for her balance or something like that.

I am really anxious to get her into "rehabilitation day care" now.  It's a lot of work keeping the house together, trying to keep us all healthy, and dragging us to the doctor when we're not.  I'll be so relieved when her daycare providers are taking care of most of her therapy.  Sunday we have our hearing with the Ministry of Social Services - Betuach Leumi.  They will determine if Gili is worthy of special services and the monetary stipend given to officially "special needs" kids.

I need to get dressed and buy diapers now.  Maybe I should further embrace my stay-at-home-momming and make my own cloth diapers!  Or maybe not.  I hope by our next PT appointment on Thursday I have time to try some of Nili's suggestions.  Tomorrow I'm hoping to get Gili what may be her last blood test for a long time.  No more every week or every month finger pricks!

Tuesday, October 12, 2010

Thinking About Crawling

On Sunday I had one of my longest phone conversations with my grandparents - over seven minutes.  They live in Florida and I try to call them about once a week.  I generally give them the positive side only, ei. Gili and Big Bro are healthy today.  (As opposed to I have tonsillitis and Big Sis has an ear infection.)  I tell them about my husband's more interesting clients/jobs, and I try to tell them something about each kid.  This week I was excited to tell my grandmother that Gili was "thinking about crawling."  She asked happily, "She's starting to crawl?"  I clarified, "No, she's just thinking about trying to crawl."  But for me it's wonderful to see her acting less "content."  Not long ago she was only rolling in one direction without much intention.  Now it seems like she's making some effort to move in a specific direction or do different things with her body.  I love to see her trying!


And here is a picture of Gili's new set up with a mirror in front of her jumper.  If you were that cute, wouldn't you want to jump in front of a mirror every day?

Thursday, October 7, 2010

Dad Takes Charge

Monday morning I stalked the ENT's waiting room with my 102 degrees F fever until a nice Russian doctor saw me.  He sent me to the ER for what I thought were some tests and a specialist's opinion, but they decided I needed to stay to be treated with antibiotics for five days!  I got out early on good behavior, and probably because of the way I answered the doc's questions during my morning check:

ENT: Your throat is still very red.
Me: It's always like that.
ENT: Well how do you feel?
Me: Better.
Nurse: You see her eye?
ENT: Yes, I see it...
Me: I think I just got an eye lash in it, I was rubbing it, do you see anything?
ENT: I don't see anything. You can put... (searching for the word)
Me: Saline?
ENT: Yes, that's fine.  So, you want to go home?

I ended up back at my regular doctor that afternoon so he could check out my eye, which he determined was infected.  So I went in with tonsillitis, and now I have an eye infection in both eyes.  My main goal today was tackling the laundry, changing our sheets, and trying to sanitize our environment since we've all been sick.  I'm looking forward to opening the windows as the weather cools.  We have big windows on three sides of our apartment, for a nice cross breeze to air out the house.

In the mean time my husband has taken over.  He's always been great with the kids and the house work.  He pretty much does everything except the laundry, which I don't like him to mess with.  And he doesn't cook as healthy as I do, but he cooks, cleans, bathes the kids, gives them lots of attention and intellectual stimulation.  and now something new:

Wednesday he organized places for Big Sister and Big Brother after school and took Gili to her PT appointment.  He said he learned a lot and it was very eye opening.  And this evening he took real initiative with her exercises!  I hope it lasts.  It's hard work, not just to find the time, but the physical coordination.  I need all the help and encouragement I can get, so I'm thrilled to see him getting on board.

He also managed to read the EEG report and it seems that it came back with no findings.  That's good, right?

Sunday, October 3, 2010

I don't want to be "that mom".

You may have noticed that this blog is somewhat anonymous.  If you are a friend of mine stumbling here for some unknown reason, you can probably figure out who I am.  But you cannot Google me or my kids and get here.  I have only recently begun linking to this blog from other comments I make, and not yet on the blogs of personal friends.  My family members, including my husband don't know I'm writing this.  "Why?" you may ask.

1. When I started writing, not long ago, I didn't know if my daughter would be noticeably "special."  It is hard to completely erase anything on the Internet and I didn't want it coming back to haunt her.  If she chose to share this history with her future friends and family, I wanted it to be her choice.

2. As my daughter was not yet noticeably delayed,  I didn't want her to become the playgroup version of the high-school or college kid who admits he has HIV.  Aren't we more than our diagnosis?

3. Another reason is that I didn't want to become a spokes-mommy for CMV.  I didn't want to parents to think I was judging them if they kissed their children on the face, or think I was scrutinizing their hand-washing technique.

So, you may imagine I had some qualms about sending the following e-mail to our play group.  First, some background:  The playgroup was formed based on our common language: English.  I have yet to attend the playgroup do to health reasons and my mom being in town.  None of these women know about Gili.  I have actually been nervous about joining the group for fear that pregnant moms will judge my decision to bring a CMV infected baby to the group.  A couple women were asking questions to the whole e-mail list about potty training.  I REALLY did not want CMV to be their first encounter with me, so it was a very difficult decision whether to chime in on the discussion.  I'll have to get back to you in the future about my regrets.  Here are the CMV relevant portions:

"EVERYONE -  I know a couple of you are expecting, and I'm guessing many of you are of childrearing age.  I know you don't know me, but I am NOT the lady who forwards every warning and scare, but as we are discussing potty training, I want to mention CMV.  Please read this  Many moms think that they need to rush to potty train one sibling before another is born, but I am writing this to warn you to please limit your contact with your children's bodily fluids if you are expecting or thinking about it.  The CMV specialist in Schneider says that all preschool aged children should be considered carriers of CMV.  Urine has the highest content of the virus, which is why I'm bringing this to your attention now.  A lot of the other precautions are tougher: don't eat you kids leftovers, share cups, kiss them on the face or arms!  But for G-d's sake, think twice before multitasking while changing diapers or cleaning up accidents, and scare your husbands into some good hand washing skills.  Now I will get off my soap box, and I hope you won't remember me as "that mom."

I look forward to meeting some of you in person this week or next week!  Shavuah Tov!"
Any thoughts?  I have never received any response when I mention CMV to preschool principals or teachers in the US.  I guess I'm hoping that my e-mail is an unselfish act, while I am selfishly considering my own social wellbeing in a new community. 
I want to take a moment to confess that I feel a little guilty spending more time on Gili's blog than holding my sweet girl.  I've been in bed with an average of 102 F or 39 C fever, alternatively shivering and sweating.  I am hoping my most recent dose of ibuprofen will kick in soon and I can get some sleep! 

Eye Contact

In my last post I shared a blog of which I was looking forward to reading more.  Unfortunately, I've had too much time to read because I've been stuck in bed with what actually may be strep throat AND the flu.  Big Sis and I were both on antibiotics for about six days when we ended up in bed with fevers and more.  Thank you to my husband for loaning me his new laptop because my trusty old  Apple is in a coma.  Now when I'm well drugged and conscious I can watch stuff and play games.  My husband thinks Gili is teething, but I think she misses me.  I've been trying not to share my germs and it's really hard not to snuggle her and kiss her all over when I'm near her.  As painful as teeth are, they are an exciting reminder that Gili is maturing, even if her motor or social skills don't reflect that.  She'll be 1 year old at the end of October!  Back to the blog... As any good blog (with human readers) does, it inspired me to comment, and I thought I might as well do it here.

I was very touched by the post about Elias's mom letting the boy hold his crutches because he called Elias his friend. Having two older kids, neither of which have always been on the ball, socially, I can say that hearing someone call your child there friend can be wonderful even if your child doesn't have any special difficulties.  I would use the Yiddish word "nachus" - a sort of filling up with pride you might feel upon seeing you children succeed.  I felt that for a special needs child this post was directly linked to an idea in the previous post on eye contact, where I commented:

"A few days ago my mother and I were discussing my baby. My biggest concern was her eyes and my mother's was that she should walk. Looking back, I realize she is still being my mother first. Her concern is that if she can't walk it will be harder on me. My argument is that it is difficult to form relationships without eye contact. I think I could handle pushing my daughter around in a wheel chair for years to come, but it's a little creepy when she looks at me like a cartoon crazy person with her beautiful blue googly eyes."

I feel that having friends or "friends" can be linked to eye contact. I think that if my daughters best "friends" are other girls who are only playing with her to do a good deed, she will still have more "friends" if she can hold eye contact and not look crazy.  It doesn't matter how much she has going on inside her mind and soul.  If the windows are foggy, no one will see in.

Friday, October 1, 2010

A Blog I like

First, an exciting moment this afternoon.  Gili successfully transfered her new rattle from her right to left hand!  She looked like she either wanted to do it again, or was trying to bat it out of her hand, when she eventually dropped it.  She actually rolled toward it (a half roll) before loosing interest, but I cheered her on and helped push her feet and keep her on her stomach until she eventually scooted close enough to touch it (we're talking about a 9-10 inch distance.)

My mom left on Tuesday night after staying with us for two weeks.  I love having her, but it's also stressful trying to make the most of our time together and still hold the house together.  We kept the traveling very simple, one trip to Jerusalem, once to Tel Aviv, and one physical therapy appointment.  She also brought me some things from The States, like a new water bottle (the two I brought cracked, but I'm totally infatuated with this model, nothing else can compare) and baby magazines that arrived since I moved out.  Of course, they are mostly ads but I found some tidbits of good info, like:  New research shows that giving Tylenol after a immunization reduces the antibodies produced!  The best feature I read was a sampling of "must read mom-blogs" in Parenting (Early Years).

I am looking forward to reading more of Following Elias.  Elias's mom, Christy Everett, is a compelling writer and it seems we have much in common with our situations.  I hope that one day I won't be so busy journaling Gili's new diagnoses and keeping track of physical therapy homework, and I can turn this blog into a witty, touching, and amusing blog like Christy's.  But, as long as she keeps writing, you can just go there for some flavor.  From what I've read so far, this is what I have gathered:  Both her and I live far from our families, she in Alaska and I in Israel.  Until blogging we were both regular irregular journal writers.  I used to write in my journal once ever few years to record my goals from what I wanted for my birthday, what CDs I wanted to buy, to what I wanted to be when I grew up (a teacher, complete with classroom rules and ideas.)  In addition, Elias's list of symptoms are remarkably similar to what I see in Gili's future, but wouldn't dare say out loud.  Another interesting aspect is that her healthy daughter is just a tad younger than Gili, so as I see pictures of the progress her "special needs" son is making, Elias's little sister reflects the lack of progress of my daughter.  I love the pictures of Elias hiking in the forest with his canes.  He seems to have a drive that I have yet to see in my content little Gili.  And maybe one day I'll have some readers, too.  But for now I think it's just me. Echo... echo...