Wednesday, December 29, 2010

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.

Tuesday, December 21, 2010

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."

Thursday, December 9, 2010

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!

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!

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  http://www.cdc.gov/cmv/index.html.  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...

Friday, September 24, 2010

Almost Scooting?

Gili is making some good progress getting up on her knees.  Usually it is her face/shoulders and knees and sometimes her elbows.  Her left arm still seems very stiff.  I bought her a rattle at the Tel Aviv Museum of art.  It is like woven plastic, very lightweight and a little squishy.  Here is a picture of me feeding her and holding her hands the way Nili recommended.

Monday, September 20, 2010

Physical Therapy Pictures and Homework

Gili made some good progress this week getting up on her knees briefly to scootch forward, usually with help.  She is just starting to vocalize more sounds like, "addah."

She cranked out less than half way through physical therapy today.  It is hard for her to do more than 10-15 minutes.  It is also hard to get the appointment to land between her sleeping and eating.  Nili used the work "proximation" to describe when she puts weight on her shoulders or limbs.  Here is our new homework:

- Have her sit with her legs forming a circle, then flip on leg back to the side so she sort of leans in one direction.
- Wrap a large soda bottle in a towel and roll her on top of it.
- Find a toy like a miniature punching bag that will pop back in place when she swats at it.
- Rub her face, press in with some force, and massage her face, gums, and limbs.
- Put some biscuit crumbs on baby food on her cheeks just outside her mouth to stimulate her mouth.
- Put scotch bright pads on the outside of her bottle.  Put her hands on it when I feed her and put my hands over it.

 

Wednesday, September 15, 2010

Physical Therapy Homework from September 9

Gili had her first real physical therapy session with Nili on Monday.  She looked exhausted.  Even since quitting work and Hebrew class, I don't know how I will have time to do all these exercises with her between her sleeping and eating.  The doctor suggested I do the following exercises with her 3-4 times a day or as much as possible:

- When I pick her up from laying on the ground, first roll her onto her elbow and hold her weight on her arm for about 10 seconds.  (Working up from 5 second last week, to 20 second in the future.)

- Put her in a sitting position and push on her shoulders for about 5 pulses.  Do this on the floor and also on an unstable or bouncy surface like the sofa or a foam mat (which I don't have, but maybe I should get. )

- When she is face down on the ground, put something in front of her that she will be enticed to reach and give her feet some resistance to push off, like my hands or legs, to help her move forward.  Also try this with both her legs in one hole of some stretchy shorts to hold her legs together so they won't split.

- Put weight on her legs, and also just her knees, buy hanging her over something like the sofa or sofa cushions.  She suggested I have my kids jump up and down in front of her to get her attention so she would try to push up/stand up to look and not just have her head down in the cushions.  I could also use a mirror or exciting toy.  When we did this during the session we used a large square foam column on its side.  Nili helped Gili stay on her legs on one side on the column and I was on the other side holding her upper body/shoulders on the foam and trying to get her attention, so she was facing me.  We did get her to put some weight on her legs.  I'm hoping her jumper will also help with this.  I should hold this for a minute several times a day.  It's not easy with one person.

- Also hold her in a crawling position (hands and knees) for about 30 seconds.


She also suggested I put her on a blow up mattress that is firm.  Let her play and do her exercises.  Then slowly let some air out and see if the instability forces her to use her muscles to stabilize herself.  She also suggested putting her on cellophane and bubble wrap.  She said I should get her a drum/tambourine to bang on.  I mentioned that Gili was often more interested in the light than any of her toys.  Nili suggested wrapping a toy in aluminum foil to get her attention.

More later.  My mother, Gili, and I are going out to buy a sukkah now!

Child Development Report from September 5, 2010

Below is the letter from the child development specialist "hitpatchut hayelled"/neurologist "neurologuia" in Schneider Hospital.  Thank you very much to Mrs. Y. E. for the translation.

Institute for Child Development – Schneider Pediatric Hospital
Director: Dr. Dov Inbar;  Head Nurse: Ilanit  Posnanski
Tel: 03-9253614; Fax: 03-9253871
Code no. of visit: 158879xxxx  
Summary of examination 5/9/10

To the attention of:
a) Social Welfare Dept. of Municipality
b) National Insurance Institute
c) Pediatrician in local clinic Dr. Monica Finkelstein

Gili xxxxxx– 10 month old infant with general developmental retardation resulting from intra-uterine congenital infection with CMV virus.
Gili underwent examination today for the first time by myself and by the social worker Ms. Frieda Weisman. She was also examined by physiotherapist Ms. Nili Arbel.
Medical history: born in USA at 41st week of pregnancy, normal delivery, weight 2,750 gr. At 5 weeks urine test detected CMV positive.
After immigration to Israel diagnosis made, ambulatory treatment and follow-up by Professor Amir in Children's Dept C – Medicine = Ganciclovir.  As a result of retinitis ultrasound of head showed existence of fluorescent blood vessels in both sides of thalamus in the brain .
Thorough examination was conducted of both the eyes and fields of vision, showing physiological laboratory values of VEP ERG to be normal for her age. She is being monitored in optical clinic due to “squint” (strabismus). Hearing tests were carried out, monitoring in ENT clinic and audiology. She can hear today.
Mother xxxxxx – aged 26, father xxxxx aged 29, both healthy. Children – sister of 5 and brother of 3.5 – both healthy.
Physiotherapist's report attached.
Diagnosis:  GLOBAL DEVELOPMENTAL DELAY
MICROCEPHALY
S/P CONGENITAL MICROCEPHALY


Today's developmental function is in region of D.Q =45 points
INDICES
Cicumference of head 41.7
Physical examination – no signs of dysmorphism

Neurological examination
10 month old infant with few developmental achievements.
Gross motor skills – head falls back when pulling child into sitting position, does not support legs when put into standing position, does not crawl and does not sit when put into sitting position. Is able to roll from side to side. Conforms with development of 5 months. Language and speech – no imitation of speech sounds, no varied syllables – conforms to level of 5 months.
Fine motor skills – doesn't use hands in play relative to her age.. Conforms with level of under 4 months.
Social skills – does not play "peekabo", doesn’t feed herself, doesn’t try to reach objects and doesn’t object to toy or rattle being taken away from her. Conforms to level of under 4 months. General level of function D.Q. = 45 points
Neurologically the child has hypotonia and suffers from a deficiency in reactions including falling back of head when pulled into sitting position.
(A line here still needs translation.)
Follows object sideways with her eyes, squint STRABISMUS. Reacts to noises.
I spoke with the mother about the situation and our recommendations.
Recommendations for treatment
Placement in a suitable rehabilitative day center where the child will receive treatment to advance development, physiotherapy, occupational therapy, speech therapy.
Mother reports that child suffered brief convulsions at home last week including inclination of head to left side and  intensified low muscle tone in lower limbs. Event lasted only a few seconds without breathing problem. Request for EEG during sleep. Follow up and treatment in clinic of Professor Yaakov Amir in Children's Dept C.
Also optical clinic and audiology.
Neuro-development depending on her situation – in the institute.

Signed – Dr. Dov Inbar –Head of Insititute
 

Wednesday, September 8, 2010

Sleeping Potions, Warm Baths, and Farewell our Graco

Gili's EEG yesterday went very smoothly.  It's quite a process and a lot of waiting in between.  We sign in upstairs, then get sent downstairs, where we get questioned and checked by a nurse (vitals taken, etc.), then by a doctor, then back to the nurse for the syrup to help her sleep.  The process for the BERA is the same, but this is the first time we made it past the doctor's check.  During all the waiting,  Gili supposedly hasn't eaten for 4 hours, but I know how long it takes to get the syrup, so I figure 4 hours from then, not the actual appointment time.  Either way, she's pissed.  Finally I manage to shush, hum, and rock her to sleep.  The ERG technician attached 12-13 nodes all over Gili's scalp with medical paste.  Then Gili slept peacefully for 15 minutes with lots of wire extending from her head, while I attempted small talk with the technician.

As soon as I open my mouth its painfully obvious to the unfortunate recipient of my broken Hebrew that I haven't been here too long, so that is usually the conversation starter.  And this time of year (the Jewish high  holidays) people also ask what you are doing for Rosh Hashana.  Either you are having guests or you're going out, usually to family.  It is unfathomable to Israelis that you wouldn't have close family in Israel.  It seems like everyone is going to their mother's or in-law's house.  I've heard Israeli's complain about living 20 minutes from their parents and siblings!  My mother actually is visiting next week and she'll be staying in our guest nook for two weeks.

Finally we were sent back down stairs where Gili woke up, ate, and was checked again by the nurse and doctor.  We were supposed to watch her constantly until 6 pm.  As soon as we got home a gave her a good bath to get all the sticky stuff off her head.  Gili loves the bath!  I lay her right down in the slippery tub with a few inches of warm water and she kicks and splashes and laughs until she's cold or pruney.



After she took a long nap and I took a short nap, my husband woke us up to go buy a stroller.  I actually hired a babysitter so Gili and my husband and I could go test drive stroller.  After 5.5 years of HEAVY duty use our wonderful light weight Graco with the huge basket was on it's last leg.  It didn't fold and there was a bar hanging off.  Most people here have these huge, expensive, sleek, strollers with no basket or parent tray, where you have to completely remove the seat to fold it or change for different "stages", similar to the Bugaboo, I think.  We "traded up" for a heavier, more expensive, taller (I'm very short) Chicco stroller with a smaller basket and little wheels.  But it has all the trays and things that were important to me.  Gili looks very comfortable in her new throne, but I think it's a much bumpier ride, and not such a good choice for the bumpy paver sidewalks here.  It maneuvered well in the store. Oh well.

Now I need to get ready for the holiday of Rosh Hashana, shich begins tonight.  Have a sweet, healthy, and happy new year!

Sunday, September 5, 2010

Ten Month Report - 2

Gili is sleeping in her new (hand-me-down) crib!  Both the sleeping and the crib are reasons to celebrate.  Now we can pass along the bassinet/mini-crib we borrowed.  This is her third night sleeping with Big Sis and Big Bro and it's working out great.  I've had a theory that she sleeps better when other people are sleeping in the same room.  Like we give off sleep pheromones or something.  Well my kids see to have some strong stuff, because the last two nights she woke up and went back to sleep on her own.  I think I'm finally past being up with her at 1 or 2 am!  I'm also looking forward to cleaning my room while she's sleeping.

I'm very tired, but I want to give a summary of today's events before I forget.

She hears!  Nancy, the audiologist originally from the Washington DC area, says the report is pretty much the same.  She performed better than last time, in my opinion.  She scored a 20 (3 months ago it was 30, I think 10 is normal) and she probably still has some fluid in her ears.

We saw Dr. Dov Inbar, a Neurologist and Child Developement Specialist with 30 years experience.  He is also a visiting professor at Einstein Medical Center in New York.  He looked at her and scored her on his developmental chart.  She is hypotonic.  She scored a 45 on his D.Q. scale, with 100 being average.  She is considered to have severe global delay.  I may post his report after I have it translated.  The break down was: Gross motor skills <5 months,  fine motor <4, speech/language <5, social adaptive <4.  He explained that in the regular medical system Gili wouldn't get more than once a week physical therapy, and she needs much more than that.  The only way she can get that is to get her into a day care center for special needs children.  There she can get all the therapy she needs.  There are two not too far from us and transportation in included in welfare/social services package.  Apparently we're also entitled to 2000 NIS (approx $230) a month on top of the other services.  He said the idea is that in America you get more services, but in Israel they feel the services are lacking, so they give you money to buy extra services.  So far I see nothing lacking, but he gave examples like hiring someone to give extra help in school or to give the child extra attention so you are not taking time away from your other children.  He wrote us a letter explaining his findings and printed copies for the different government branches to which we need to apply.

We also met with a social worker named Frieda.  We were really treated like royalty today.  She took down a summary of our case, including family situation.  She explained to me a little about how the developmental departments work together, the special day care, and what she can do for us.  She explained the process of applying to the two government branches and what we need, and she wrote down everything carefully in English and Hebrew.  She also helped me fill out the forms, which were only in Hebrew.  She called both offices; made me an appointment in one, and explained to both that I would need extra help as I don't know Hebrew and don't understand much about the system.  I will explain more about this when in a couple months, but basically:

We start with the social security office.  We bring all the documentation of her situation to apply.  They eventually call us back for an interview in front of a committee about two months later.  I think the process of getting approved basically labels her for all the future services she might need.  That's also where the money comes from.
Then go to the Ministry of Welfare and Social Services.   We will meet with a social worker named Chana.  I think she helps us start the process of getting into the special day care and any other services she may eventually need.

So I now have letters  from Dr. Inbar, Frieda, and Nili - the Physical Therapist, for the applications.  I also have more appointments!  An EEG Tuesday (because of the little seizure), the new social worker in the welfare office - Chana on Sunday, Nili Monday, a BERA in two months, and Dr. Inbar again in three months.

It seems that many of my original questions are getting answered faster than I expected.
And now I need to go to bed. 

Tongue Tie and Other Almost Forgotten History

I just wanted to mention a little a piece of Gili's history I missed and didn't want to leave out.

When we first arrived in Israel I was suspicious that Gili was not growing and I also was unsatisfied with her nursing style.  She fell asleep before nursing well and I didn't feel like she had a good suction.  I only knew because I had two good nursers with whom to compare.  With Gili it was like I had to work to hard to keep the whole act together.  I needed more hands to hold her and her head, her lip, myself...  So finally I got her weighed and she hadn't gained weight in at least a month.  I quickly found an English speaking nursing consultant (and fellow blogger - A Mother in Israel/) who tried to help me, but we just couldn't get it right.  She eventually mentioned that Gili may have tongue tie (Ankyloglossia).  I think she mentioned that it was a little controversial; many doctors don't believe it is a problem.  However, she sent me in the right direction.  Eventually I met with Dr. Roee Furer, D.M.D.  He said her tongue was fully tied and quickly cut her lingual frenulum as well as that connecting her upper lip to the middle of her top gums.

I'm not convinced it helped.  I should have gone back, but I was concerned with his quickness to cut and his interest in clipping my other two children's tongues based on a survey and without having seen them.  It is very possible that they all need there tongues cut, however I can't find substantial research as extensive as Dr. Furer's that isn't directly from him.  His research makes a lot of sense, and if I find another [respected] doctor who agrees with his findings, I'll bring my children to Jerusalem to have them "untied" post haste.

Gili had several signs of tongue tie including trouble nursing, falling asleep, poor weight gain, and fungus on her tongue.  The doctors didn't mention a conection between the fungus and tongue tie.  Our pediatrician, Dr. Monica Finkleshtein, gave us a fungicide, Professor Amir said it wasn't a problem, and Dr. Furer said it was something that needed to be watched after carefully, and was cause for concern.

We did actually get reimbursed for the procedure.  I didn't have time to get the approval, but one of the representatives we spoke with said, if she needs it, go ahead and we'll figure the rest out later.

Eventually we met with Dr. Yehuda Finkelshtein (yes, our pediatrician's husband), an ENT - Otolaryngologist specializing in baby eating problems, at Meir Hospital in Kfar Saba.  He said her tongue was short, but not tied.  He said she needed a longer nipple, specifically the Haberman Feeder.  After some difficulties getting the right one and the terrible expense, especially in Israel, we gave up.  I did try the one that was a little shorter and Gili wouln't take it, so I didn't want to spend close to $50 on another one for her to gag on.  He was really nice, even gave me his home number and address, because he lives near us.  I wonder if Gili will have to meet with him again or if a speech therapist will help her from this point on.

So that's the story.  Boring as it may be, it's part of the picture.

I also wanted to mention a couple tiny, possibly relevant details I missed in previous posts:
The Physical therapist (Sept. 1) mentioned that she couldn't find a soft spot, but maybe the plates in her head were overlapping.  She also said she shouldn't be in her jumper for more than ten minutes at a time.  I don't understand well enough to explain why, but I'll trust her.

I also thought it was worth mentioning that I was potty training my son while I was pregnant.  I think I may always wonder how I got CMV.

Wednesday, September 1, 2010

Ten Month Report - 1


What a day! I convinced my husband to accompany me to our appointments today so he could hear everything first hand. It turned out my son’s first day of school was only an orientation until 10 am, so we had to pull him out early and drag him along. Thank G-d! He was good company as my husband only wanted to read the newspaper. But it didn’t help that I only got 2.5 hours of sleep last night.  Gili was having way too much fun dancing in her new toy to go to sleep before 2 am.

Here’s the report from all the doctors we managed to see today:

Ophthalmology: Gili has a slight “squint” (cross eyed). They don’t exactly know why her eyes jiggle, but it’s probably her eyes trying to focus. They didn’t seem concerned that I thought her eyes were getting worse.  She has a scar in the left retina (I think that’s where) but it’s not “active” retinitis.  She doesn’t need glasses because there’s nothing we can do about it. She probably won’t see “6/6”, but we won’t know until she’s maybe 3 years old. I assume that’s the European equivalent of 20/20. Come back in 6 months (March).

Professor Amir (CMV specialist): He answered a lot of my questions. I described the odd little episode I witnessed last night (legs tensed up, head tilted to one side slowly twitching), and he did think it was a little seizure, but as long as she can breathe and it’s brief I shouldn’t worry yet. If one lasts more than a minute I should call him right away. (Obviously if she’s not breathing I go to the ER.)

He agreed her left arm seemed stiff and he felt in general that it was definitely time to start physical therapy. (Last time he said she didn’t need it yet.) He said it’s normal that some kids don’t want to eat until they’re one year old, and the runny nose is also common in babies in general. He said I shouldn’t worry about her being contagious because we should assume that all young children carry CMV. If I get pregnant again I should practice careful good hygiene (including not kissing my kids on their faces) because I could still get a different strain of CMV.  She has borderline microcephaly. We won’t be retesting for calcifications in her brain because they can’t do anything about it anything.

Prof. Amir said that there are about 140 CMV kids for whom he keeps records. Gili is one of 5 or 6 who are really “damaged”. (No euphemisms here!) He hasn’t seen deterioration in hearing with the treatment.  And active retinitis and sometimes cerebral problems are often halted. I tried to drag out of him some ideas about what we might expect. (My husband is VERY against this idea of trying to predict the future, but I have a need to plan.  Even if I know the plans will change, I want to know.)  He thinks she will probably walk because she already rolls now.  It seemed from his reaction that she probably won’t be in a regular class, and if she is she will be behind.  Like at two years she’ll be like a one year old.  We will repeat the BERA in 3 months (at 1 year old).

Should I just lie about her age when I don’t feel like explaining things to strangers? Probably not a good habit to get into. Please suggest any clever things I can say to keep from explaining or getting unwanted advice.

Physical therapy: Yes! They actually squeezed us in for our initial appointment today. I love this country! They definitely seemed concerned about her behavior, sight, and stage of development. I DEFINITELY appreciate their concern, I don’t need them to be overly optimistic. But I hope it doesn’t get them down. She’s such a pleasure to work with, laughing and giggling, and I think she responds very well to exercises. We spoke with Nili, who was very kind and extremely helpful. She’s working it out so we will probably get in to see a neurologist on Sunday (when we are going back to see the audiologist.) I just need to have a couple papers faxed over.  She said that we would make a plan based on the findings of the neurologist.  She gave me two exercises to begin at home.  The first involves putting weight on her arms, beggining for 5 seconds and working up to 20 seconds over the next few weeks.  The second is basically tethering her legs together by putting both her legs through one leg opening of a stretchy pair of shorts.  The idea is that if she tries to scoot forward or if I get her on her knees she won't just do a split.

There was a new therapist, named Talia, who was observing and I spoke to her while I was feeding Gili. Gili fell asleep on my lap and I asked her to take the bottle for a second. She was really nice, but I think she treated it like bio-waste, trying not to touch it and thoroughly washing her hands afterward. I not suggesting she shouldn't be careful, I just thought it was worth noting her attitude.  It was suggested that Nili is past her child-bearing years, so she would be less hesitant to touch Gili.  Still I would hope she washes her hands between sessions.

I don’t know if I should be very upset about all this news, but at the moment I am glad things are moving along with the physical therapy and neurology. And I feel very tired, but jittery from the coffee. They have a machine in Professor Amir’s wing that makes different coffee or hot cocoa for about 25¢!  (1 NIS for the coffee,  0.5 NIS for the cup.) 

I think I am starting to become more upset by the idea that there is damage in Gili's brain.  I think possibility of seizures is going to keep me on edge.  Until now I was comforted by the idea that G-d made her this way for some reason that I will never know.  She and our family were meant to have this challenge.   Now I think the idea of all this "damage" is a little scary, not just because I don't know what effect the damage will have, but also the idea that her soul is trapped with this possibly defective body and a mind with which she may always struggle.  There is an idea that G-d does not give a person more than they can handle.  He creates the medicine before the cure; we just have to discover it.  I feel a little honored that G-d thought I was worthy of this beautiful little gift.  I love Gili with all my heart.  She has needed me to rise to the occasion of her challenges, and I believe that being strong for her has made me a better mother to all my children.

Monday, August 30, 2010

New Jumping Toy


Ten months: Gili is holding her head up and using both hands in her new toy!  I hope this jumper helps her strengthen her spine and reach for things.  Thank you Aunt N!

Sunday, August 29, 2010

Progress with Improvised Exercises

Over the last couple days I've seen Gili get up on her knees a few times.  Not quite the pre-crawling rocking back and forth I would hope for by this age, but very briefly getting up on her knees and shoulders or knees and elbows.  Maybe it is pre-scooting.  Either way, it is very exciting because it seems like she has come a long way in the last week with the little exercises I'm doing with her.  She also has begun rolling in the other direction.  Oy, she just threw up a little.

Unfortunately, I've noticed two worrisome things.  (Leave it to me to find things to worry about!)  Her eyes seem to be getting worse.  Before they were just cute cross-eyes, and a slight feeling that they lacked alignment.  But today one of her eyes seemed to wander more noticeably and it's a little creepy.

I also noticed that her left arm seemed a little stiff, but after gently playing with her a little I was able to get her to straighten it a few times.  I think I will continue to do some gentle stretching with her arms and legs and pay more attention to her flexibility.

She still seems sick.  I'm constantly suctioning yellowish mucus from her nose.  But she hasn't had a fever in at least a week and  half and she seems happy today.

The Medical System in Israel

Medicine is one of the most integrated professions, with Arab Israelis, Jews, and Russians all working side by side.  My primary care physician is a Dr. Riyan Jihad, and he took off for the beginning of Ramadan.  I'm pathetically unaware of who's Jewish, etc, so I can't tell you if I would have chosen a different doctor in the beginning, but I always come home saying, "Wow, he's so nice." (Not, because he's Muslim, because he's nice compare to other doctors.)  The radiologist who administers Gili's BERA" is a Muslim women and I look forward the seeing the fun colored outfits she wears, though I don't know how she can stand the heat of the hospital in her thick head-to-toe garments.  Many of the nurses are Muslim, especially on the Sabbath.  The patient rooms are also mixed and if you want to see many different cultures all being treated with the utmost care and respect, the hospital is the place to be.  The only reason I care is because I only speak English, and less Arabs and Russians do.  It gets lonely when there are three patients to a room with all their visitors and no one I can talk to.  When we were first admitted I was blessed to be stationed next to a wonderful English speaking family from our city.  I was very new in town and they introduced me to many of the friends I have today.  We still keep in touch.

Even though it is socialized medicine, you can still pay for upgrades in your plan or private insurance.  You usually don't have to wait as long to see a doctor as in the U.S. and paying for private insurance doesn't really change that.  It's more about the perks than the quality of care.  If I need to see a specialist in a hospital or outside our plan, it costs me about $7 for a “Form 17”, but we already reached our max of around $30, so we don't have to pay.  I filled out a form with my credit card and now they will fax the forms wherever and whenever I need them.  The receptionists in Israel are not like the gatekeepers of American doctors.  They are friendly and helpful.  They make appointments and help with paperwork, but they don’t have anything to do with keeping you from seeing or talking to the doctor.  If I call and say, “Dr. Finkleshtien please,” I get to talk to her.  They have been unbelievably helpful through all that we have been through.  Anytime I say I had trouble making an appointment because of my lack of Hebrew or anything, they help me.  

In Israel you sit directly outside your doctor’s door within the “kupot cholim” health clinic and just have to convince the other patients when it’s your turn.  There is no receptionist or nurse who calls you.  There is a list of appointments, but there are always people who try to get in without an appointment.  They eventually get in by convincing another patient of the severity of their illness or of the briefness of their request, “I JUST need…” At the pediatrician I can leave my boxing gloves at home, but I still need to sit as close as possible to the door and be ready to shove my stroller in as soon as it’s our turn. 

Doctors don’t have separate offices for examining patients and giving patients bad news.  The exam table is in the office and you don’t have to take of all your clothes and lay down for every little thing.  Usually the doctor will just walk around the desk and look in your throat.  You enter and give the doctor your “magnetic card.”  They slide it through the slot next to their keyboard and can pull up all your medical records, labs, and even see upcoming appointments in the hospital or with specialists.  I can see the same information if I log in from home, or take my card to a self-serve kiosk in the kupat cholim.  They look like self-serve movie or plane ticked stations. 

Many doctors, including my physician and doctors in the hospital go by their first names.  The workweek is Sunday-Thursday or Friday morning, but don’t try to get anything done in a hospital on Thursday, because people are already getting into a Friday mindset. 

Israeli’s don’t have the same respect for administrators and “gatekeepers” (secretaries and other people who keep you from where you want to be or who you want to talk to.)  We’re one big family and people will argue with a pharmacist or clerk like your worst argument with a brother or sister, but they can be laughing together a minute later.  It is hard to handle, because I am more sensitive to what feel like evil looks or criticism.  And because everyone feels like family, I have lots of “friendly” advice to look forward to as Gili’s developmental delays become more noticeable. 


Saturday, August 28, 2010

Ganciclovir Treatment Decision

I've been reading more stories on StopCMV.org and I haven't seen any stories of children treated with Ganciclovir, so I wanted to share what our doctor told us and our experience with it.

First, I don't know when I got CMV and Gili couldn't get a definitive diagnosis of congenital CMV because she was tested at 5 weeks of age.  I was hospitalized with the H1N1 flu at the beginning of my 3rd trimester and given Tamiflu.  I suspect there may be a link between that and the CMV.  In a previous ultrasound they said my fetus measured in the 95th percentile.  After the flu I was measuring smaller, even though I hadn't lost weight.  I didn't believe my midwife when she thought my baby would be around 6 lbs, because my other kids were around 7.5 lbs.

The diagnosis was made in Schneider Children's Hospital in Israel when she was 2.5 months.  (I will post all about the Israeli health system in my next post.)  It was based on the positive 5 week urine culture and other symptoms, including enlarged liver and spleen, brain cysts, and a scar in her left eye, suggesting a virus in-utero.  This was at the end of a whole day of testing that I originally thought would only be a brief consultation with a doctor.  (Luckily, I was still trying to nurse at the time, so I only ran out of diapers at the end of the day!)  The tests were orchestrated by Dr. Haimi, an infectious disease specialist.  (I think that's his first name, common even with doctors for adults.)  He was so nice and considerate, and only spoke English to the other staff when I was in his office.  I went back to his office between all Gili's tests, then finally met with Dr. Haimi and Professor Amir together.  Prof. Jacob Amir is either the head of the Infectious Disease department or Pediatrics, I'm not sure.  He does a lot of research with CMV and told us about the range of treatment time frames.  He said that with the evidence we should treat for congenital CMV, even though we could never be sure.  We still didn't have the results from the BERA (hearing test).

Prof. Amir said that he has seen the best results from treating for a full year.  He continues to remind me that he has never seen hearing deterioration after beginning treatment.  Gili began comparatively late, but I tell her, "Don't be special."  I probably should have been shocked and devastated by the weight of the day, but I think the most shocking thing at the moment was, "Get some sleep, I'll see you at 8 am tomorrow."  So I went home, loaded up my MP3 player, prayed for WiFi in the hospital, showered, and otherwise prepared for at least a week in the hospital.  All I really new about the treatment, was that before Gili was tested, her pediatrician in America said that it was not an easy treatment and if it was positive we would meet with a specialist to decide whether to treat.  I asked Prof. Amir a lot of questions but I couldn't uncover any major risks.  He didn't seem to be posing any choices to me.  It was like, if she hears now, we want to keep it that way, this is what we will do.  I never posed the option of not treating.

Gili would have blood tests every week and we could lower the dose if it was hurting her.  I use laymen's terms because I don't know exactly what to worry about.  Now Gli's dose is lower and she only gets her finger pricked once a month.  I check her results online and Prof. Amir explained what I need to look for.  On the line that says "NEUT.abs" the number should be above 1.  If it's between 0.5-1, I need to have another test a week later, if it's below 0.5, I call him.  Lately it's been over 3.  I still don't completely understand the risks, and I don't know if the treatment had anything to do with her bronchiolitus and pneumonia two weeks into treatment, but I hope with blog will be a story of Ganciclovir success.

When we got into the hospital she didn't actually get treatment until 8 p.m. because it takes a while to get the medication.  We were told we would be there at least a week, but it was aggravating, because we were only waiting until the anesthesiologist had time to put her PICC line in.  There were several days we were told "maybe tomorrow" or "maybe today" but they never came to tell me what time she needed to stop eating.  It wasn't until the morning of the procedure that the nurse said, "good luck" in a way like she needed it and I started to worry.  She said it was hard to put a pick line in a tiny baby.  Gili finally got the PICC line after we were there about a week, I was so happy and relieved to be with her as she was waking up.  We had to wait to get all the papers in order for her home treatment (see picture in second post).  A nurse came to the hospital to train us to use the PICC line.  I had to "pass" in order to be sent home.  It was a lot to take in, but the nurse was very nice, passed me, and gave me her cell phone number and e-mail address in case we had questions.

If you're interested, this is what I remember of the procedure:  Take ganciclovir out of the fridge about an hour ahead.  Wash hands, put on mask, open sterile field (blue paper), open tubes and gauze onto it without touching, squirt alcohol on gauze.  Put on gloves (there's a special sterile way to do this.)  Wipe all the places where something opens 3 times, each time with a different piece of gauze.  Hook up the lines, valves and saline.  Slowly push through saline.  Hook up ganciclovir syringe and put syringe in battery operated devise.  Set devise to deliver Ganciclovir over 1 hour.  Remove mask and gloves and take a deep breath and wait.  Then repeat sterilization to remove ganciclovir syringe, slowly push through heparin, and close everything up.

We had to do this twice a day at specific time intervals.  Once I got good, I could do it in almost any clean place.  I could leave the tube attached so she could stay asleep in her stroller and the sterile field could be a meter away on a table.  The battery devise also allowed us to go out, for instance if she had an appointment during the time I needed to give her the medication.

The intravenous treatment lasted 6 weeks and she needed her dressing changed in the hospital every week.  Finally her PICC line was taken out as soon as our pharmacy secured the oral Valcyte - valganciclovire.  She started with two doses a day at specific times.  Now she takes one dose every morning.  We have to put in in her bottle with a little formula because she gags on anything that doesn't come from a NUK nipple.

This post is purely our story, and every case is different.  However, I don't understand why American doctors don't treat more often before children loose their hearing.  I hope I will read more stories in the future of Ganciclovir success.