Sunday, November 14, 2010

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!

Monday, November 1, 2010

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!