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.

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.

 

  

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

 

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!

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.

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.