Monthly Archives: September 2012

Ds13 flying to US to visit friends

This morning I got up at 3 am in order to take ds13 to the airport, so that we could get the first bus leaving our city to Akko, the train from Akko, and then be there three hours before his departure time.

This was a replay of Thursday morning, except on that day, it was my husband who was got up early to take him.  When they finally got to the airport, they were told that ds13 wouldn’t be allowed to board since he didn’t have an accompanying adult with him.  Dh had checked the airline website before we purchased the ticket, but apparently misunderstood the policy about unaccompanied minors.  With just five minutes before the flight departed, dh cancelled the ticket so that we would be able to get a refund.

This was a huge disappointment to ds13, who has been asking me for months if I’d let him to to the US to visit his friends.   I repeatedly said ‘no’ to the idea of a visit during the summer.  But about five weeks ago, I had a sudden understanding about how deeply important this was to him.  It’s not easy to leave all of your friends and move to a new country, with a new language, mentality, and culture.   It was hard.  But he did it with a good attitude, which is how he does most things.

He was willing to use all of his savings towards the ticket, and when I realized how good for him it would be to reconnect with his friends, I quickly agreed to help him make his travel plans for Sukkos vacation.  This trip was something everyone in our family felt happy he was able to do to be doing because we all know how much he’s missed his friends, and his anticipation was at a peak by the time he got to the airport.  It was hugely disappointing for him to be so close and then suddenly be told that he wouldn’t be allowed to fly.

I told dh that because it was our mistake that caused the situation, it was up to us to try to remedy the mistake.  Dh spent hours on Thursday scouring the internet for another affordable ticket, he couldn’t find anything.  The cheapest ticket we could find was almost $500 more than his ticket had been. Reluctantly, we told ds that perhaps he could fly to the US for Pesach, in another six months (the next time he would have a long break from school).

He didn’t complain, but even though he said it was ‘fine’, he hardly said anything for two days.  He asked me to call his best friend’s mother and notify them that he wouldn’t be coming because he couldn’t make the call.  I was so sad about this; I had hoped that somehow we could find him a ticket but despite our efforts it just wasn’t happening.

On Saturday night, I got an email from a close friend that encouraged to make one more effort to find him a ticket.  My husband thought it was a waste of time, but I told him that if there was any way we could get ds13 a ticket, I wanted to do it for him.  After hours of searching, I found a ticket for him that was only about $200 more than his original ticket – leaving in 28 hours.  Not only wasn’t it a huge amount more than the first ticket, this ticket was with an airline that allows children his age to travel alone so we wouldn’t have to find someone to accompany him, and also flies directly to Baltimore instead of NY – so not having to drive to NY to pick him up and drop him off make things much easier for his grandparents, which I’m happy about.

I stayed up in the early hours of Sunday morning to take care of this, then had to leave three hours later on the 5:45 am bus to Jerusalem in order to be there for my appointment.  Ds was sleeping when I left so I wasn’t able to let him know about what I had done.  (I didn’t tell him I was trying to find him a ticket because I didn’t want to raise his hopes.)  We got him on the phone later on just as he was about to leave for school, and I told him, “I wanted to let you know that you have a ticket to fly to America tomorrow morning at 10:30”.  There was a pause and then he said in a shocked but happy voice, “Are you serious?  Oh my gosh!”  I think he said something else like he couldn’t believe it and thanked me, but the happiness in his voice in his first six words was enough to have made all the effort worth it.

I’ve been feeling pressured about a couple of things going on right now, and there was an important message for me that was something that I really needed.  I felt like we were the ones that had to make the ticket purchase happen, but then all our efforts to get ds a new ticket were totally useless.  It wasn’t until I totally gave up and recognized that it wasn’t up to me that G-d sent me what I was looking for.  And He sent us something better than what we were hoping for.

This is a message I need to internalize and hold onto.  Right now I’m dealing with a couple of situations that require a lot of energy and effort on my part and it’s been discouraging and disheartening to see the lack of progress in the direction I would like.  The reminder of this flight situation is that it’s really not up to me because I have absolutely no control over anything that happens.  I have to make the effort, but I also have to accept that I’m not the one who can control the outcome.  Things may look bleak but G-d can do anything, and things can change from seemingly impossible to incredibly wonderful in a very short time – like ds being able to go to the US!


Choosing between the good and the best

Today my husband and I went to Jerusalem for a morning meeting.  When we were planning our day on the bus ride there, my husband had suggested we go to the Kotel – I haven’t been there since we moved here, and he felt it was an especially important time for us to do this and pray for our family before Yom Kippur.  I agreed with him that it would be a meaningful thing to do and a valuable use of our limited time in Jerusalem.

But when our appointment was over and we were back to the Central Bus Station to get a bus to the Kotel, I reassessed.  Whenever I come to Jerusalem (this is the fifth time in over a year), it’s kind of stressful.  There are only three buses that leave early in the morning from Karmiel, and just two buses in the early to mid afternoon that go from Jerusalem to Karmiel.  So I get up super early each time to get to Jerusalem as soon as possible, and from the minute I get there I’m rushing from one thing to another, trying to squeeze in everything I possibly can before the last bus at 4:25.  It’s exhausting and draining and though I feel productive each time, it’s not fun.

But this time I was feeling sick and nauseous from having so little sleep and nothing to eat and hardly anything to drink (because it’s not a good idea to drink before a three hour bus ride with no rest stops!).  And I told my husband that what I really wanted to do was to go home on the first bus and until then, to get something to eat and for the two of us to have a chance to talk without being rushed or needing to do something.  This is what really felt like the best thing to do.  He agreed.

To make this decision, we needed to assess what was the good and what was the best, and to choose the best.  Sometimes this is a hard decision to make because the good things in our lives look so good – doesn’t taking time for spirituality and connection to G-d at the holiest place in the world seem like a really good idea, especially right before Yom Kippur?  Of course it is!  But taking time to nurture ourselves physically and make time for our relationship, to talk without interruption and without being rushed to do something else, was even more important for us right then.

This is something that looks different for each person, and will look different for the same person on different days or even at different points on the same day!  When we made the choice that was in alignment with our true priorities and needs, a feeling of calm filled us.  We’ve had several important issues to take care of lately that have required a lot of time and energy on our part, and pausing for renewal was the the right thing to do to balance ourselves as a couple right now.

Often the good things seem so compelling that we let them override our sense of what the best thing for us is in that moment.  It’s not always easy to identify what is the best choice at this moment, and it’s certainly not always clear. But it’s always worthwhile!


Our new crawling track – a developmental tool

Here’s our newest baby apparatus – a crawling track!

If you’re anything like me until about 2.5 months ago, you’ve never heard of a crawling track and can’t imagine why in the world anyone would want one!  I read about this when Yirmiyahu was two or three days old, and once I understood the benefits resolved that we would make one for him.

The idea of a crawling track is to provide a safe and comfortable environment in which your baby is encouraged to move from birth (if you have one at that point).   Why not the floor?  The narrowness of the track allows the baby to move forward, and the sides give him something to push off against.  A blanket on the floor would get rumpled and in the way, a mat on the floor doesn’t have anything for the baby to push against to keep him going straight.  Also, the track can be lifted on one side at different angles depending on the age of the baby, according to what is needed to help him make his way down the track (higher for very young infants, lower as they get older).  Once a child knows how to crawl, they don’t use a crawling track anymore – this provides a place for them to have lots of early opportunity to move and when they can crawl on the floor they won’t need this.  The recommendation to use a crawling track comes from the work of Glenn Doman, who has studied the development of healthy and brain damaged children for over fifty years and shares practical suggestions for parents based on his experiences.

What’s the point of encouraging them to move?  Very much in brief, there is a direct relationship between movement and learning.  Crawling on the belly and creeping on all fours is critical to integrating the primitive reflexes of the lower parts of the brain.  The lower parts of the brain  are organized in the first year of life through crawling on the belly and creeping on all fours.  The more organized movement there is, the better it is for the brain.  This is good for any baby, but for a baby with issues like T21 I think this is of even more value in enhancing their physical and cognitive development.

Yirmiyahu below on the track for the first time – one end was slightly raised so that he would be at an incline that would assist in his movements. Edited to add: It’s recommended that a baby go down the track ten times a day – so far Yirmiyahu only goes down it a few times daily but we’re working up to the recommended amount of times.

You can see below how he’s lifting his head and pushing one leg against the floor of the track to propel himself forward.

The next picture was taken just a couple of minutes later – notice how he’s moved forward on the track.  It helps to have brothers to cheer him along the way!

These can be purchased in the US for about $450 – not cheap!  I knew this was something we could make ourselves but it took a while to make it because I wanted to do it as frugally as possible, and that meant finding materials that I could recycle for this project. A couple of weeks ago, we found something that someone was giving away that looked like we could dissemble for the materials, and brought it home.  That was a great find, but the next day, ds10 found something even better, which is what we ended up using.  It was just the right width and length for the track and the sides, and was basically a board covered with a thin layer of foam and material (we took this apart so that it could be washed before using it).  The track is supposed to be six feet long, and the sides are between 6 – 8 inches high.  The foam wasn’t one inch thick, which is what was recommended, but it’s comfortable and firm so it works out just fine.

Though it’s recommended to use vinyl or naugahyde for the top layer, I preferred the soft and velvety material that I used – it’s smooth enough that it doesn’t impede movement, but there aren’t issues of offgassing that vinyl would have.  Then again, it won’t be as easy to clean as vinyl but to me that’s a small price to pay for something that is better for the baby’s health, not to mention more cozy.  Dh cut each side piece and then affixed them to the bottom piece with brackets.  The ten brackets were our only financial outlay for this project – a total cost of twenty shekels ($5).  Once he finished that, he left the rest of the project for me. While it took time, it wasn’t difficult, and I was very pleased with how it turned out.

We keep this in the living room and Yirmiyahu goes in as often as we can manage – people like to hold him a lot when he’s awake so this limits his track time.  Since babies move so much in their sleep, it’s recommended to put them in this rather than a crib to give them room to move, which we do for naps.  At night, he sleeps with me and his movement is limited to him squiggling himself as close to me as he can get.  Which I totally love.


Homemade goat milk formula for babies

Last week after a visit to the doctor it became apparent that Yirmiyahu isn’t gaining enough weight just with nursing.  I have a  theory about why that is – I think it’s because his palate is high and narrow, and he can’t create enough suction to keep the milk in his mouth.  I see there’s a lot of spillage as he nurses and don’t think it’s a milk supply issue, and his sucking is good so I don’t think it’s caused by a weak suck.  Whatever the cause is, I needed to do something to address the lack of weight gain.

The  day after the doctor visit, I had to travel to Tzfat and hoped to buy goat’s milk from a friend, but we weren’t able to connect in time.  Fortunately, she has a neighbor who studies here in Karmiel and she was able to send it with her, and two days later I had two liters of fresh goat’s milk to use.  Until I got the milk from her, I used formula from the store.  His weight was a really big concern to me – at ten weeks old, he was only a pound more than his birth weight (7 lb) – and immediately remedying this was my top priority.

Before I tell you what I did to make my formula, I’ll share why I didn’t want to use store formula.  Firstly, just looking at the ingredient list makes it hard for me to countenance giving this to a baby.  It’s very artificial and processed, and I avoid this kind of food for my entire family; since babies with T21 frequently have digestion issues, finding a healthy alternative is especially valuable. I didn’t want to use cow’s milk (even with homemade formula) because so many kids with T21 have allergies and issues with casein and I’d rather take a proactive stance and avoid this issue rather than wait for a problem to later show up.

Soy formula has its own issues; I read a while back that soy formula isn’t supposed to be sold in Israel anymore but I don’t know if that’s accurate, and since I sent dh to the store to make the formula purchase I wasn’t able to see if it was on the shelf.  I don’t know what the formula alternatives are available for those with milk allergies, but there must be something. I tried coconut milk but it seemed to upset his stomach, and even if it had been okay for him, what I buy here has stabilizers added and I didn’t want to give him something with preservatives.  I tried the broth formula based on Nourishing Traditions and he didn’t get full – he kept drinking and drinking with no satiation.

Then I thought of goat’s milk. It’s high in fat, very digestible and low in allergens.  My adaptation of the recipe in Nourishing Traditions is below:

Homemade Goat Milk Formula

  • 2 c. raw goat’s milk
  • 1 t. cod liver oil
  • 1 t. extra virgin olive oil
  • 1 t. butter oil (I don’t have this yet but plan to add it once I can get it since it works synergistically with the cod liver oil – I hope to have it in about a month)
  • 1 t. organic blackstrap molasses (plan to add this to the next batch)
  • 2 t. extra virgin coconut oil
  • 2 t. powdered nutritional yeast
  • 2 c. filtered water

Mix everything together, and shake well.  Yields 36 oz.

I didn’t add nutritional yeast to the first batch, because I wanted to see how he tolerated the basic mixture.  If there would have been a reaction, it’s easier to narrow down what is causing the issue if there are fewer ingredients to start with.  The nutritional yeast is particularly important when the formula is made with goat’s milk, which is rich in fat but doesn’t have folic acid, but this is something that some children react to so it’s good to be aware of that and pay attention to how your child responds.

Now that I’ve made a batch with nutritional yeast and it’s been tolerated fine, I’ll add in the blackstrap molasses.  I’ve written about blackstrap molasses before; it’s a good source of iron and B vitamins.

I add a vitamin supplement called Nutrivene-D twice a day to his bottles.  I don’t add this in with the  formula because I can better control the amount he gets by adding it to the bottle right before I give it to him – I don’t know in advance how much he’ll drink in the course of a day of the homemade formula and I want to be sure of his dosage. This is a more than just a powdered vitamin supplement; it’s targeted nutritional intervention (TNI) and is formulated specifically with those with T21.  At his body weight he’s supposed to be get 1/2 teaspoon broken up into two different feedings.

I also add probiotics to the first bottle of the day.  Again, I find it easier to control his intake by doing this separate from the formula mixture.  I give Yirmiyahu .05 grams of the 11 strain powdered probiotic for those on the GAPS diet (I happen to have this in the house and it’s a high quality product, but you can use any decent probiotic) – this is equivalent to 13 billion cfus.  I started giving Yirmiyahu probiotics when he was four days old and in the NICU – when I pumped milk at home, I added the probiotics to it and then gave it to them at the hospital to use in his feeding tube.  I took him for cranio sacral work when he was 2.5 weeks old, and the practitioner commented that I must be giving him probiotics – I said I was but asked how she could know that, and she said that by looking at his tongue she didn’t see the signs she would have expected for a baby who had been on high dosages of antibiotics.

I’m still experimenting with how to most efficiently prepare this formula, but what I did with the last batch was to add everything but the water at one time.  When I was ready to prepare a bottle, I added an equal amount of hot water to the amount of formula I was putting in.  This made warming it up very simple, and also quickly melted the coconut and olive oils, which solidify in the fridge.

Yirmiyahu has been taking this for over five days now and is doing great.  Several of my family members are sure he looks as if he’s gained weight; I haven’t yet checked that (I will in a couple more days) but he’s having plenty of wet and dirty diapers again (which he wasn’t having when I was exclusively nursing).  I keep an eye on his stools to see how he’s reacting to what we give him, and this looks like it’s working well for him.  The color of his stools on the other things I tried weren’t right – blackish greenish on the broth, lime green on the coconut milk (sorry to be so graphic but this is how I could tell -along with the consistency – that the other things I tried weren’t being properly digested).  Now they’re yellowish curds again.

The only day that he had broth formula was when I had to travel to Jerusalem for the day.  When I got home, I immediately saw that he looked terrible – peaked. His face was blotchy and pale.  This reverted back to normal within a day of nursing, and the skin on his face is still looking good with goat’s milk.

For those who are wondering, I’m still nursing him.  I nurse him before I give him a bottle so he gets the benefits of mother’s milk as well as of nursing, and then give him homemade goat formula to boost his calories.  He’s drinking huge amounts of this formula, and it’s very gratifying knowing that I’m giving him a high quality nutritionally well-balanced food that is helping his digestive health in both the short and long term rather then harming it.

As far as the cost, I pay 15 shekels for a liter of raw goat’s milk; this works out to approximately $15 a gallon.  It’s not cheap but neither is formula – the cost is pretty similar – and this is definitely a better investment in his health!


(This post is part of Fat Tuesdays and Real Food Wednesdays.)

Connecting emotionally with Rosh Hashana prayer service

I had such a nice Rosh Hashana!  What made it especially nice was that for the first time in several years, I was able to daven (pray) at shul for the entire mussaf service on the first day.  I’m not a person who does much formalized prayer – I talk to G-d throughout the day but that’s mostly it.  So you wouldn’t think that this being in shul for hours in formalized prayer would really resonate with me.

When I was younger, I found the High Holiday services long and tedious.  I frequently was looking at the clock and counting how many pages were left until the end.  I just didn’t connect with the importance and intensity of the days of Rosh Hashana.  But as you get older and your children get older, you have more and more understanding of how important this time of year is.  I used to wonder how women much older than  me could stand for so long during the prayer service, and now I what I think is that they had a deep connection to the seriousness of what Rosh Hashana is, and for them, now could they count pages of their prayerbook or think about what time they need to warm up the food for it to be ready for the lunch meal when there’s so much at stake?

This year, I gave a class on Shabbos about how to develop a mindset for Rosh Hashana.  One thing I shared in the class was that we need to approach G-d with humility that comes from the understanding that absolutely everything comes from Him and that we literally have nothing and are nothing without Him.  When we really understand at a deep emotional level that G-d is determing the fate of all mankind and particularly for me and my family for the coming year on Rosh Hashana, it totally changes the prayer experience.

I thought a lot about how everything that has happened to us in the last year was decreed a year before.  One of those was especially wonderful – the birth of our baby, which I feel was like winning the lottery.  The likelihood of having a baby with T21 at my age was only one in 250, and I hit the jackpot!  I really mean that seriously; I feel so lucky and privileged to have this baby that I don’t have the words to express it.

Another of those things was extremely difficult and painful, and last year I was blissfully ignorant of what was hanging over my head and being determined for me on Rosh Hashana.   It was a growing experience that I don’t want to go through again and I really begged G-d not to send me tests like this!  Most things fall somewhere in the middle between these two extremes.  Keeping all of this in mind made supplication for a good year very much a practical and prudent rather than theoretical thing to do.

If you’re wondering why I only mentioned one prayer service, that’s because the reality of my life didn’t allow for more than that plus the mandatory shofar blowing.  The second morning I had to really let go of my desire to stay at shul and recognize that my task at that time was to be at home and take care of the people who needed me.  It’s much harder to feel spiritual and lofty in this situation, but I kept reminding myself that I need to do what G-d puts in front of me and remember that’s what He wants me to do.


Rosh Hashana shopping – so crowded and isn’t that great?!

This morning I needed to do my shopping for Rosh Hashana, something that I don’t generally leave for the day of the holiday itself because I try to avoid the stress that can accompany preparing for the holidays without enough time to do it calmly.  But I don’t have the storage space to buy what I needed even a few days in advance in the quantities I needed it, so first thing this morning I boarded a bus to go to the store.

Though I frequently takes buses locally at this time, this was the most crowded bus I’ve been on in the thirteen months that I’ve lived here!  Our buses here in Karmiel get full sometimes, but I’ve never seen it packed like this.  As I was standing in the bus aisle hanging on to a strap suspended from the ceiling squished in with people all around me, I thought how beautiful it is to live in a country where the public transportation is jam packed because everyone is going shopping for the Jewish New Year.

As I was on the bus, I mentally prepared myself for my shopping, realizing that the bus was just the precursor of a day with long lines and crowds.  It was a good thing I did this, because I stayed relaxed and smiling through it all.  Someone heard me humming and told me it was a good thing to do to deal with the crowds without getting annoyed.  I kept thinking how lucky I am to be shopping in stores where the featured products are all related to the holiday, with everyone (well, except the Arabs) shopping for their holiday meals.  The produce departments feature heaps of pomegranates, fresh dates and other vegetables that are used symbolically at the two Rosh Hashana dinners.  Even the dish soap bottles labels are printed with ‘Shana tova’ (Happy New Year) on them.  (I wanted to take a picture of some of these things to show you but forgot my camera.  :( )

I had a feeling the young lady on line in front of me at the second store was an American, so I introduced myself while she was paying and asked her about her plans for Rosh Hashana.  (She’s here on her own as a volunteer for an organization connected to the Jewish Federation.)  She said she didn’t have plans for tonight, and I was so glad because I was able to invite her to join us! We spoke very briefly in line so we’ll have a chance to get to know her more tonight, when we’ll also have my mother and husband, and two friends of dd17 who are studying in Israel for the year (they’ll be with us for the entire Rosh Hashana).

Despite the long lines in the stores I was in, I didn’t see any friction between shoppers.  Dd16 went to a different store and did see a couple of people arguing with one another about who was first in line, but another man said to them with a big smile, “Come on, it’s almost Rosh Hashana – this isn’t the time for this!”  A man on my bus told me about someone who died in a fire last night, and we talked about how this really is a time of Divine judgment.

Whoever I interacted with – bus drivers, cashiers, the delivery guy, taxi driver, people next to me on the bus, neighbors in my building – I wished a ‘Shana tova!’ which they all returned with a smile.  My house is filled with the delicious smell of challahs baking; dd16 is preparing enough to give ten of our neighbors for the holiday.  Isn’t it beautiful that even in a secular city that this is the holiday that everyone is celebrating?

May every one of you be blessed with a year of abundance, joy, serenity and peace!


Babywearing – makes it so much easier to be out and about!

Today I was on the bus to Tzfat (Safed) and was thinking – as I do almost every single time I have a lengthy trip somewhere and have to spend hours away from home – how glad I am to be able to wear Yirmiyahu in a wrap.


Me with Yirmiyahu in Tzfat – yes, it really is that beautiful!

I wrote about babywearing with a stretchy wrap when my ds3 was little, and at the time, I found it hugely helpful in freeing up my hands and taking care of things around the house while keeping the baby happy.  As useful as it was then, it’s even more helpful  now!  When we moved to Israel, I got rid of all of our baby stuff in our ruthless downsizing, with the exception of three things – one of them was the stretchy wrap, and one was a mei tai.  I knew that if we had another baby, it would be expensive to aquire these again and that I’d really regret not having them.  I’ve so many times thought how glad I am that we brought these along, because with all of the traveling in the city as well as outside of the city, it’s made my life so much easier.  Now that we don’t have a car, the helpfulness of a wrap has skyrocketed!

I started wearing Yirmiyahu when he was less than two weeks old, at our first post-hospital doctor visit.  Every time I needed to take a bus to another city for another appointment for him, I felt so grateful to have the stretchy wrap – the option would be taking a bulky stroller that I’d have to fold with one hand while holding him with the other, while simultaneously try to board the bus and pay without falling over!   Not a fun thought.  Like this, he’s securely held in place even when my hands are full or occupied, and I don’t have to drag extra baby paraphenalia around with me.

I also find it useful for when I need to get around locally, like trips to the store or for my daily walk to pick up ds5 from kindergarten.  He stays cozy snuggled against me while I get my errands done.  Today I tried a new way of wearing him, which I think is an improvement for him.  Since babies with T21 have more flexible joints, you’re supposed to keep their legs together as much as possible.  When I would put him in the wrap facing towards me, I always arranged his legs so they would be together, but now I’m wearing him facing sideways (similar to the cradle hold) and it’s easier to be sure his legs stay together the entire time.  Both positions are comfortable for me since my back is well-supported.  (See picture above.)

Not only is it practical, babywearing is helpful for a baby’s development in a number of ways.  Dr. Bill Sears says that babywearing stimulates the baby’s vestibular system, and that the stimulation “helps babies breathe and grow better, regulates their physiology, and improves motor development” (Sears and Sears 2001).  At the same time that babywearing offers the baby stimulation, it’s also calming for them.

I think that because he’s in the wrap versus a stroller that Yirmiyahu gets noticed alot, because he’s at chest level for people walking by so they don’t have to look down and into a stroller to see him.  That means lots of smiles and comments about how cute he is, as well as comments about the wrap itself.  Today the bus driver asked me as I was paying, if the baby was comfortable. I’ve had people tell me he’s too hot, too cold, too squished, too young to be out, his head isn’t supported enough,his head should be covered because of the sun or air conditioning, his legs should be hanging out, his legs shouldn’t be hanging out, he’s not secure enough – but since they usually tell me how cute he is at the same time, I don’t mind too much!  I think of it as a nice thing about living in Israel, that strangers care enough to tell you how to take care of your child.

I was fortunate to be given this wrap by an online friend (who is also a blog reader) when she finished using it with her son, and it’s gotten tons of use since then!  I’ve shared it with a friend in Michigan, who used it for months and then mailed it back to me when she finished with it.  Then I moved to Israel and I shared it with two different friends here.  And now I’m using it once again.  It’s gotten lots of mileage and I anticipate that it will get a lot more usage before I’m ready to move Yirmiyahu into the mei tai.

I’ve been asked by lots of people if I use this in the house, and the answer is, rarely.  It’s really useful but when the kids are home, there’s always someone (usually more than one someone) who is waiting to hold Yirmiyahu.  He’s rarely put down unless he’s sleeping, though sometimes someone will put him in the baby seat and rock him.  More often, when one person is finished holding him, they pass him to the next person waiting.  Now that the kids started school, I’m hearing daily complaints from several of them that they hardly get to hold him anymore.  Problems, problems.  :)


First therapy appointment for Yirmiyahu – not fun and not productive

This morning I woke up feeling inadequate to deal with the needs of all of my children, and felt particularly guilty that I’m not doing enough for Yirmiyahu.  I was originally told that he’d get an appointment at the child development center around the age of 4 – 6 months, and I thought that it would be okay to wait for that.  I’ve bought some books and have doing some things at home with him to aid in his development, and thought I was on the ball.  But at ten weeks old, I’m now feeling like I’m behind since I’ve been told recently by several parents of children with Trisomy 21 that I’m supposed to be getting him to therapy appointments by now.  That’s not so easy here since I can’t make the appointments until they’ve processed all the initial paperwork we’ve submitted so I have to wait for them to contact me.

Well, G-d is very good to me and knows my limitations, because this morning as I was sitting in the doctor’s office for another child, the child development office called to tell the doctor that they had an opening for today and wanted me to have it, but weren’t able to reach me.  She smilingly looked at me and told them, “They’re sitting right in my office this minute!”  I was so happy to get the appointment with a physical therapist and get the process started for him.

Later that day when I went for my appointment, I was a bit disappointed about it all.  No, not disappointed.  Discouraged is more accurate.  When I got there, they asked me questions about the baby and a number of questions I didn’t see as directly relevant to a physical evaluation, like how old he was when I found out he had Trisomy 21, where I was notified about it, how they told me.  But they finally finished with that and I was happy we were going to get down to business of them evaluating him physically and giving me suggestions of exercises I could do with him at home.

That wasn’t what they had in mind!  They were nice, but I can’t explain the tone that all of the questions/comments were made in – very kindly, not quite condescendingly and not quite patronizingly, but it didn’t make me feel warm and fuzzy at all. I felt like it was a psychological intake, and that somehow everything I said was a reflection of my poor parenting.  For starters, my husband didn’t come – it didn’t even occur to us that he should.  They wanted to know why (he has to work!) and said that he really should be there for every single visit.  Then after asking about our family (Did you finish high school?  Really, you finished high school?), children (where do they each go to school?  How do you get them to school each day?), I was asked about if I give Yirmiyahu any vitamins.  I told them yes, that I supplement with Nutrivene-D, a special formulation for people with Down sydrome, as well as probiotics.  (What?  Did the doctor tell you to do that?  And you thought it was okay to give that to him on your own?)

Then they told me that I don’t support his head properly when I hold him.  A bit later they asked me what position he sleeps in, and when I said that he sometimes is on his stomach, asked me what gave me the idea that I should do that.  I explained I do this specifically to help him develop his muscle strength and because tummy time is known to be very important developmentally, and they told me that even though I thought I was helping, I’m endangering him and there’s no benefit to him anyway.

Then they weighed him – he’s hardly gained any weight.  They told me that he needs supplementing with formula since the nursing is too tiring for him and taking too much effort.  (I’ve been very concerned about if he’s been eating enough, so in this case I appreciated their feedback although I didn’t totally agree with their conclusions.)

They put him on the padded table to watch his movements for about fifteen minutes; they said that his body motions are at an eight week level, which I suppose is good since his gestational age is eight weeks (he was born at 38 weeks).  They seemed to say that because there are movements that are ingrained in a young baby from before he’s born that then disappear, that what we were seeing might be from then and not reflective of his movement ability now.  I wasn’t sure what the significance of this was.

When it was finally time to leave after an hour and a half, I put the baby in the wrap.  And then I was told that was dangerous, that I was causing head extensions and I needed to put him in differently.  By this point, he was screaming and needed to be fed, and I didn’t have much patience anymore for listening to someone tell me that every single thing I was doing was harming him.  I had walked in with so much positivity and as I walked out, I felt like all the things that I had done specifically to aid in his development had been turned around as wrong.  It wasn’t the best feeling that I’ve ever had.

But this was just the ‘getting to know you’ meeting, and hopefully next time we’ll actually move to more assessment and skill development.  For now, I’m going to have to pat my own back for the efforts I’m making with Yirmiyahu, and will continue to stay open to their assistance and suggestions.


Mixed feelings about my current computer limitations

I’ve been without a computer for a few weeks now, and it’s a situation that I’ve had mixed feelings about.  What was originally my overwhelming feeling was one of frustration because I was so used to having constant access and that was hard not to have.   This was especially frustrating since some of what I do for ‘me time’ requires online access (listening to Torah lectures, blogging, preparing my parsha class).  The second feeling was one of appreciation that my energies are less divided and I’m able to be more emotionally present for my kids – often if they talk to me when I’m online, I’m only listening with half an ear.  I feel  more relaxed and focused, because my attention isn’t being split up in different directions as much.  (With ten children, I still have plenty of times my energies are divided in many directions!)

Tonight I was enjoying talking with my older kids and hearing them share thoughts about Rosh Hashana (dd17 shared the contents of an entire shiur she listened to, and I told her only half jokingly that she should give my weekly class instead of me this coming Shabbos!).  As I was sitting there, I realized that my feelings about not having a computer have shifted from minor frustration about not having a computer to use, to mostly appreciation of the increased time I have to do the many things I need to do!  I feel more mentally focused on one thing at a time

I’d like to say that I’ve enjoyed this period so much that I won’t be getting another computer, but despite how much I’m enjoying being without a computer, it is a tool that I find very valuable.  What I hope to take with me when my access is restored again is a better balance between my online and offline time.


Coconut Chicken Curry with Bulgur Pilaf

A couple of weeks ago, I was having guests for both Shabbos meals and realized that I hadn’t prepared enough chicken.  It was too late to run out and buy more, so I looked to see if there was anything in the freezer that I could use to enhance the menu.  I found a couple of pounds of chicken breasts, which were there because I never could decide what to do with them!  My kids don’t care for white meat since they think it’s dry, so I looked for a way to prepare this that everyone would enjoy.  I adapted a recipe from the Joy of Cooking, and this was a huge hit with my guests and family, so much so that my kids asked if from now on I can make this instead of our traditional roast chicken!

Coconut Chicken Curry

  • 2 pounds of chicken breasts (you can also use thighs)
  • 1 c. chopped onions
  • 1 large carrot, sliced
  •  2 scallions, chopped
  • 1 T. finely chopped peeled fresh ginger
  • 3 cloves of garlic, minced
  • 1/2 can of coconut cream (you can use a whole can of coconut milk but I find it more economical to use cream and dilute it with water)
  • 1 T. curry powder (I used a combination of tumeric and cumin)
  • 1 t. salt

Saute the onions, carrots, scallions, ginger and garlic until soft.  Then add half of a can of coconut cream.  Fill the empty coconut cream can halfway with water, and pour that in the pan as well.  Add the spices, mix thoroughly, and bring the mixture to a boil.

Then add in the chicken, reduce the heat to simmer and cover the pan while it simmers for 20 minutes or until the chicken is cooked.  White meat cooks fast, so don’t leave this in too long.  It should be tender and flavorful.

You can serve this with cooked rice, but what I served it with was bulgur pilaf:

Bulgur with Sauteed Onions and Raisins

  •  1 c. chopped onion
  • 1 c. raisins (I used golden raisins but you can use any dried fruit that appeals to you)
  • 1 1/2 c. uncooked bulgur (cracked wheat)
  • 1/2 t. cinnamon
  • salt and pepper to taste

Firstly, prepare the bulgur.  Put 1.5 cups of bulgur in a pot or heat proof container, add in a bit of salt and pepper as well as the cinnamon. Then pour 1.5 cups of boiling water over it all, stir it, and let it sit until the water is fully absorbed and the bulgur is soft.

While you let the bulgur sit and steam, saute the onions in oil.  When they are soft and slightly browned, add in the dried fruit.   Stir this into the bulgur mixture.  Voila!  That’s all there is to it.

This is absolutely delicious served warm with the coconut chicken curry above.


(This is part of Real Food Wednesdays.)