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!

A Special Soul

I don't know if I've mentioned this previously, but before I knew Gili had CMV, I still had this feeling that she was different.  Like her place in this world was less secure.  She was smaller, more delicate, and less aware than my older children.  I was thinking about it again today.  People say that children are a gift, but really, they are a loan.  There is an idea that people with special challenges like handicaps. poverty (or wealth), or other unique circumstances were put in that situation on earth for a reason, like to make up for something their soul did in a previous life.  Once in a while I wonder if Gili's soul was given  CMV as a challenge, but right now she seems so happy, I wonder if she will ever really feel the burden of her disabilities.

The main thing I was thinking today was how honored I am that G-d loaned me this special soul.  I was thinking this while I was writing Gili's name on her car seat and on her towel for water therapy tomorrow.  I want to write my name all over her to say she belongs to me, bring her back to my arms as soon as possible!  But I'm just so happy to have her on loan.  I was thinking this again when I was covering her in good night kisses and backing out of the room while observing my three peaceful children.  All life is precious, and you never know what could happen tomorrow, but I feel like the terms of Gili's loan are still more uncertain.  I'm just so grateful for any time we have together.  I hope we are walking hand in hand when I am 100!

Gili Goes to School

We sent Gili back to school late Sunday morning.  I was sick in bed and my husband asked me if GIli should still see a doctor even though she seemed much better.  I said, "if she's better, take her to school!"  She still coughs and has some green stuff coming from her nose, but she seems to be doing well.

She loves school and I love knowing that she's getting proper stimulation.  I love having the house quiet and making my own schedule without my husband reminding me to do the dishes or do the laundry before Gili wakes up.  I love bringing Big Sis and Big Bro home at 1:30 PM and not constantly shushing them because Gili is sleeping.  And they love getting my attention until I leave to pick Gili up around 3:00 PM.  Life is good.

I've gotten a lot of exercise this week taking her to school.  Usually I put her in the Baby Bjorn and walk to the bus stop and from the stop to her school, and then when I'm alone, I walk the whole way.  Yesterday I forgot my bus card and walked home 30 minutes with her in the Baby Bjorn.  My back is a little sore, but after having her away all day, I like to travel with her close.  When she faces me, we can talk, and when she faces forward, she leans her sweet head on my chest.  Either way I get to smell her and give her kisses the whole time.

Gili has had two or three sessions with the physical therapist, Yael.  The therapist also sets her chair and directs the other teachers and assistants in her exercises.   I was surprised to see her chair back completely vertical, but she seems to be doing well.  Sometimes it's nice to see her in an environment where she's not behind.  She is one of the more severe CMV cases in Israel, but one of the more advanced students in her little class.

Today a young woman came in to work with the kids in shiatsu / reflexology.  Sunday the class has water therapy / hydrotherapy.  Gili is only allowed in with a letter from Professor Amir saying she is not contagious, or at least that it is safe for her to go in with other children.  When I asked Professor Amir about such a letter months ago, he said that all children of preschool age should be considered contagious.  But no one likes that response.  It's annoying that Gili is singled out because she was born with CMV, even though she is less likely to have an active infection than other snotty-nose children.

First Day of School

Yesterday we met Gili's teachers and left her at "school" for a few hours.  Today we had to take her home early because she was sick.  I had concerns about her health this morning, but I didn't want her to miss her first full day of care.  Hopefully she'll be back on Thursday.  I was a little nervous and giddy leaving her there.  She's my little buddy; I'm not used to doing anything without her.  But Dad was even more emotional!  I don't know if he was sad or scared.  I feel like my little baby is growing up.  She actually has classmates!  I'm just so happy with everything, I don't know where to start!

I'm so grateful she's finally getting all the care and therapy she needs.  And it's only a 20 minute walk from our place!  Transportation is part of the package, so hopefully next week she'll have a driver and an escort who will pick her up and bring her home.  I feel like I don't have to spend as much energy worrying about her progress and general well-being now that I have professionals to do that for me.  I know it seems like a bad attitude in this age of Nanny-cams and background checks, but her teachers seem so loving and "with it."  My biggest worry is teachers/caregivers kissing all the kids, and the parents kissing the kids... that's a lot of germs linked cheek to cheek.  But if you have to worry about something, too much affection is a good option.  Each child has their own thermometer so the teachers can check if they have any concerns, which they did today.  There is one main teacher and at least two assistants for the class.  Officially Gili has seven classmates, but I've only met 3, so I'm guessing it's not usually a full class.  They have food, bibs, matresses, blankets... all the stuff I had to buy for my other kids' preschool.
There are different therapists who work with the children on different days: Physical therapy, speech therapy (including eating and communicating), ocupational therapy (including using hands), and a visual instructor.  This facility is specifically for blind and visually impaired children.  I had to stress GIli's vision issues at our hearing in order to get in, and I will try not to take it for granted.  I expect that if they fill up with more severely blind kids, Gili might be sent elsewhere. 

For more information about Gili's new school, "Eliya," visit the website for American Friends of Eliya.  You can also see pictures of parents and children in the hydrotherapy facility.

A couple of the staff members questioned why I hadn't learned Hebrew, but we haven't had any communication issues.  And Gili's teacher's parents are American!  Gili has a note book that we send back and forth to write notes or quesitons for the teacher and v.v.  It's great to be able to write in English and the other staff has been very helpful with the forms.  G-d willing Gili will get water therapy on Sunday!  I'm so excited for her!  She will have a special chair set to her size and needs and she will also have a "standing chair" to help her body get used to standing.

I have so much more to say, but I think I should get some sleep and put down more thoughts once Gili's had a little more time in "school."

Eating, Crawling, and Grandpa

The day before my last post I was trying to think of what I could get Gili for Chanukah that she could really appreciate, and also thinking about the Social Security money we would hopefully start getting.  I decided that the thing we would all enjoy the most would be flying my father in for Chanukah.  So I discussed it with my husband, who fully agreed that he would also enjoy having my father and that it would be an excellent use of the money we hoped to have, and even if it didn't come through, it meant enough to us that we could still probably split the ticket to get him here.  So Big Sis drew and picture and I wrote a note, and finally my father agreed to come, though he didn't agree to letting us pay.  And now he's here!  Today just him and I went to Tel Aviv, walked along the beach all the way to Yaffo (Jaffa), then back up through Tel Aviv to a yummy pizzeria.  But Gili is enjoying the cuddles and I think my father is enjoying her.  I've always thought they got along particularly well.  They're both quit and not needy or clingy and they both have very blue eyes.

We're on the verge of seeing Gili crawl.   My dad is here for two more days and we're hoping he gets to see her first "crawls."  My father and I have taken a little more initiative with her eating, as well.  She still doesn't quite seem to know what to do with the food once it's in her mouth.  But this evening I was able to spoon feed her slightly thickened formula without her objecting.  But I'm not sure if more went down or came out.  And do you see those new teeth?  Just when I was starting to worry about why she had three all on the bottom, four starting coming down on top!

On Sunday we had an appointment with Dr. Inbal.  He seems somewhat satisfied with her bits of progress.  Her head circumference is keeping up with the curve just below normal.  If she has more seizures she may have to go to a sleep lab to get a longer sampling of her brain activity.  He said that  the EEG showing nothing only means nothing happened while they were testing.

We did get the paper work from Betuach Leumi (Social Security) and we have an appointment to stand before the omitted that puts Gili in the rehabilitation day care.  There is no reason she wouldn't be accepted, but we still have to wait our turn and travel to Yaffo (Jaffa) and show up.  I hope to have good news about that soon!

We're In!

I realize I’ve been neglecting this blog a bit, but I think that says something about having a CMV baby: It’s slow progress. I’ve also been involved in some other writing pursuits. I started a cooking-type blog with easy dish ideas and other commentary. I’ve made contact with the grandmother of a boy with CMV and a mother about my age with a CMV son around Gili’s age. Both English speakers in Israel. I am also getting involved in a charity project I will talk about later.

We had a busy weekend. Friday night we had a party to celebrate some accomplishments from my children, Gili’s completion of Ganciclovir, and my husband's business.

Yesterday I took my kids to the park and put Gili on some of the equipment. One thing she really seemed to like was a tunnel with little holes where the light came through in a funny way. I thought it would be good to do her exercises there because it would help her not roll over, it was a good height for me, and she seemed happy. But it also bothered my eyes a little because the light though the holes gave a strobe light effect. I was trying to straighten her elbows and hand to put weight on her arms like crawling, and she seemed to be doing exceptionally well. Instead of complaining and squirming, she was laughing! Then she kept laughing. And laughing... And then I started to get a little worried, so I held her and tried to calm her down. I told my husband and asked him, as he laughed at me, to Google “laughing seizure.” I waited and hopefully asked, “Nothing, right?” He stared dumbfounded at all the listings for gelastic seizure. I spoke to Professor Amir and he mentioned that if it happens more than a few times a month we will have to put her on medication. Oy vey. I really don’t want to get started with that. I’m also getting mixed messages about its danger. It’s not like she’s in school and it’s hurting her social life. Is it causing [additional] brain damage, G-d forbid?

Last night my husband was checking his bank account for a deposit from a client and he saw a big chunk of change labeled “Betuach Leumi (social security) Credit.” So it’s official: Gili is in “the system!!” I made some calls today, but we can’t really do anything until we have it in writing. So we’re still waiting for the mail. It’s pretty exciting to have some money in our bank account, though. They gave us retroactive payments since March!

Gili had to skip her physical therapy last week because she was too sick to go. It seems like she’s been sick as long as I can remember, but this time she was very lethargic and a little warm. Still, she seems to be making some progress in her pre-crawling. She’s feeling better now, and I need to get back to her exercises.

Today one of the pharmacists I became acquainted with through our experience trying to acquire Valcyte saw me waiting (and coughing) with Big Sis, Big Bro, and a bundle of prescriptions. She called me up by name, skipping other people waiting, and filled my prescriptions. Is it a bad sign when the pharmacist knows your name? FYI, the pharmacy has a take-a-number system like a big deli. I believe there is a rule like if you have a kid under three you don’t wait. My son will be four in a couple weeks. Still, I’m sick and it was nice to get special treatment.

I was approached today about a free loan society that some people are trying to get started in honor of an elderly friend of mine who is in the hospital now with not much time left. I’m not exactly sure what they wanted from me, but the intro was something to the effect of that it was to help young people like me just getting started. But, thanks to the amazing health care system and social security, we’re doing just fine. Well, within minutes I found myself offering to run it! I’m really excited about the project. I feel like this blog and my other blog (while healthier hobbies than watching TV on the Internet) are very much in my head, and I wanted to do something to help the community. I’ve been thinking for a while that I wanted to do some community service work, but my Hebrew skills make it tough to do a lot of the things I was interested in. This is a great opportunity because it’s sort of in my field of accounting and hopefully I can rely on others to help on the Hebrew side. As I’ve mentioned before I wanted to be careful not to be consumed by CMV, and now that I’m not working, I think taking on a project like this will be a great way to be forced to think about things outside the medical world. I hope to report back that this was a good decision and that the plans are coming along!

Permission to Jump

Gili had a BERA today. I won't bore you with the details of running back and forth and around the hospital. The good news is that her left ear scored very well. Her right ear, less so. She tested positive for fluid in the inner ear through tympanometry. Nancy, the audiologist, kindly tested Gili for fluid and then squeezed her in for a hearing screen in order to try to keep her from needing the BERA, which requires sedation. She scored between 20-30, normal for her adjusted developmental age and for a child with stuffy ears. However, when we tracked down Professor Amir, he said she still needed the BERA and to tell the technician so she could do the test with the bone, circumventing the inner ear. We should have the official results from Professor Amir in a couple weeks.

I had an eerie feeling today that I'm one of those mothers who is in the hospital so much that I recognize the doctors when I see them in the elevator, I know what's on each floor, the names of the secretaries in different departments. I recognize other moms who seem to be in the hospital all the time, and the technicians, doctors, and secretaries start recognizing me. "Were you here before for an EEG?" "Another BERA?" It's been ages since I've had to tell Professor Amir's secretary, Tammy, our name when I ask for our chart, in order to take it to some other department.

The doctor who checked Gili to give her the okay for the sedation was our very own Dr.Chaimi, the very first doctor to see us last January after Gili was diagnosed. The doctor who saw us all day and discussed so kindly, and in English, the situation while we went through a whole battery of tests. He remembered us. He had to take a double take, but then he said, "Oh, It's Gili!" and then told his student a little of our history, without her chart, and asked how she was doing.

We also saw Nili. And my favorite news of the day: Nili thinks it's good for Gili to go in the jumper! Right after we bought it she said it wasn't good and we shouldn't have her in it for more than ten minutes. The next time I brought it up she said the limit should be five minutes. It has to do with the more primitive muscle movements that occur with the bouncing. She finally said I should show her pictures, so I sent her an extended video of the clip below. Today I saw her and she said she thought it was okay! Nili liked that Gili was more aware and using her hands while she was in the jumper. Woohoo!