Avivah Werner

Category: Parenting

  • October Baby – movie review

    I rarely watch movies, and when I do they’re usually edutainment type films about nutrition or something like that.

    I was recently reading something – can’t remember what – and it referenced Gianna Jessen, an abortion survivor whose true life story had been turned into a movie.  The small bit of information I read triggered my interest and I searched until I found a free online version of the move, called October Baby.

    Here it is: October Baby

    I enjoyed this movie in a number of ways.  As a parent, I appreciated the interpersonal challenges between the parents and their 19 year old daughter whom they had adopted as an infant (as a result of a failed abortion).  Parents are always trying to find a balance between appropriate intervention and intrusiveness, being being caring and involved and being overly protective, and this was one interpersonal dynamic in the film that was explored.

    The producers managed to portray a very heavy and sensitive topic, that of her prebirth experience and adoption in a balanced way; there was intensity but there was also humor.  What I found most fascinating, though, was the personal struggle of the young girl.  She was born with a number of health challenges related to the abortion but since she wasn’t told about it, never knew why she had so many issues.  She also had a deep self-loathing and feeling that she should be dead, also a result of the abortion.  The day before Yirmiyahu was born I wrote a post about cell memory, about how the thoughts and feelings of a mother during pregnancy become part of who the child is.  This is seen very dramatically in this situation.

    The movie is on the long side, about an hour and forty five minutes, but it was moving, powerful and thought provoking in a number of ways.

    If you watch this, please let me know what you think!

    Avivah

  • Developmental daycare visit triggering self-doubt

    Today I went to see the local daycare center for children under the age of three with developmental delays.  This is something that is repeatedly being strongly suggested to me for Yirmiyahu, so I decided to visit and see for myself what it was like.

    In short – it was very nice.  Nonetheless, Yirmiyahu will continue staying home with me.

    After my visit, I had a lot of thoughts running through my head.  I was trying to analyze what would be better for Yirmiyahu about being home, and as I mentally checked off the reasons I began feeling a lot of insecurity about my ability to give him what he needs.  My mind starting running the tape of, ‘I’m so busy, I have so many people depending on me and there’s so much more I want to do for him than what I do.  Maybe he’d be better off there.’

    I have lots of reasons he wouldn’t be better off there – not just because he’s a very young baby who needs to be with his mother, but because I really do think he’ll get more at home with me, but this post isn’t about that.  I don’t want to write about what the daycare doesn’t have or compare and contrast.  What I want to share about is how extremely tired I felt when I got home from the daycare center.

    At first I didn’t think much of this tiredness, but it was really overwhelming – I felt like I could hardly move.  I kept wondering why I was so tired – it’s true I only got five hours of sleep last night, but that’s not so unusual.  This tiredness was overwhelming and taking a step felt like lifting up a leg that was glued to the ground.  After about an hour I realized – it was my thoughts about my visit to the daycare center and all the feelings of not being enough that were exhausting me.

    This made me think of a couple of recent emails from readers with questions that were seemingly quite different, but the underlying sentiment was the same, that of feeling inadequate about some aspect of child raising.  I may seem like I have all the answers from my platform on your computer screen, but I have these same doubts and fears sometimes.  A child psychologist told me that guilt is a feeling that is universal to parents, so that means we’re all in good company when we get into self-doubt.

    So what can we do about it?  I was able to shift out of this within a couple of hours, once I took the first step.  For me, the first step is recognizing my thoughts for what they are.  Those thoughts are usually coming from a place of making unrealistic demands of myself, while simultaneously not validating what I do.  It’s so easy to slip from a healthy desire to be the best person you can be, to being a perfectionist who can’t see her accomplishments and nothing less than 100% is worth anything.  Not a good place to be.

    Sure, there’s always more that I could do.  I could do things to be a better mother, wife, self.  I could be more disciplined, be more emotionally present, be more physically present, yadda yadda yadda.  But right now I’m doing the best I can with what I have.  Feeling guilty that I’m not more than I am isn’t going to make me a better person.  Actually, it does the opposite – these kind of thoughts drag you down and suck all your positive energy right out of you.  Today I had to consciously remind myself of what I do for Yirmiyahu, and to value it as being enough.  Interestingly but not surprisingly, the heavy feeling of tiredness shifted once I started thinking differently.

    Parents, look at all the good things you do in the course of a week for your child.  Okay, sometimes you drop the ball, you yell or are impatient.  You’re exhausted and spent and you feel like you’re failing your child.  No, you’re not.  You’ve just lost sight of who you are and what you do, you’ve let the true beautiful you become obscured by stinking thinking!  We all do this.  It’s okay to make mistakes, it’s okay to not do everything right all the time – in short, it’s okay to be human.

    Avivah

  • Opening communication pathways with child development doctor

    Yesterday I had the first appointment with the child development doctor since Yirmiyahu was ten weeks old.  I wrote about that appointment at the time – it wasn’t a positive experience for me as I felt patronized.  I wanted this appointment to be different and consciously prepared mentally for it, to assume that those involved had our best interests in mind, etc.  I actively relaxed just prior to our meeting, to release any tension and negativity, picturing us communicating openly and with mutual respect, and with a positive conclusion to our meeting.

    Despite bounding in with lots of good energy and openness, I very soon felt myself getting more and more guarded.  This began when I had to change Yirmiyahu’s diaper, and mentioned that I needed to go downstairs to get some cream since the skin on his bottom was bleeding.  When I came back she asked about this, and I told her that he’s sensitive to the corn syrup in his formula and his skin gets easily irritated as a result of this sensitivity.  She told me not to tell her medical reasons for why it happens, as that’s her job.  Then she asked a number of questions about the bleeding, how do I know it’s not internal, etc.  I’ve mentioned this to a number of doctors in the hospital, his regular pediatrician, his naturopath and his osteopath, and never had this reaction before.  Though I answered all of her following questions as accurately as I could, I was uncertain why what I said was a problem and decided to just answer what was asked without volunteering anything else.

    She kept asking me questions and I was increasingly feeling like she was testing me and waiting to jump on a wrong answer.  When she asked about him eating solids, I told her about his difficulty in eating and my efforts in this area.  She asked me why I think he’s not eating so much.  I told her I have no idea, that’s just how it is – I was concerned that if I said anything, she’d tell me why I was wrong.  She asked me repeatedly and I told her, ‘I don’t know, what do you think?’  But she didn’t answer, she just asked me again what I attribute it to.  So finally I said, ‘I have no idea, maybe because he has a high palate?’  (I took Yirmiyahu to an osteopath last week for his first visit, and this was one of two possibilities that she raised for the feeding difficulties.)

    The doctor told me his high palate isn’t relevant, and then went on to say it’s because of his gross motor development that he pushes the food out of his mouth.  I listened for a few more minutes, wondering why she couldn’t have just said this in the beginning without grilling me to tell her why it’s happening.  I had a sense of deja vu from the first visit, when she asked me why I thought his breathing was raspy – I told her I thought he was allergic to his formula and she told it wasn’t possible (though later testing showed I was right).  By this point I wasn’t feeling very open or positive at all.

    I kept trying to shift my thinking and get into a better headspace and it just wasn’t working.  The next time she asked me a question like this, I finally said, “Why do you keep asking me what I think if when I tell you, you say that it’s not relevant?”  This unleashed a long response about how she’s a medical doctor and she doesn’t know where I get my information and can’t accept what I say at face value or she would be negligent and she can’t help it if I feel threatened by her.  I repeatedly tried to clarify my point and it was frustrating because I felt she kept misunderstanding my intention, despite my efforts to be clear and respectful.

    At this point the physical therapist who was in attendance for this meeting finally said to the doctor, “Can I tell you what Avivah is trying to say?”  She rephrased what I said in a way that the doctor understood my concern.  The doctor apologized and then explained why she was asking so many questions; she said she wasn’t trying to be condescending or minimize me and her intention was to make me feel included in the discussion.  I reciprocated by sharing with her why I wasn’t volunteering more information.  This opened the conversation up to a much better level, as the doctor and I were honest with one another while being respectful of the other and the environment became very synergistic.

    It wasn’t easy to have the courage to try to communicate with this doctor, especially when it seemed she was repeatedly not understanding my concern, but the fruits of this effort led to some very positive results that will benefit Yirmiyahu and me.  Namely, he will receive therapy locally twice a week, with a speech therapist and occupational therapist joining his physical therapist for these meetings (one extra person at each session).  (This is something I advocated very hard for in the beginning and was repeatedly told that it was unncessary.)  The doctor also suggested that there be extra focus on developing cognition rather than just gross motor skills, which is also what my priority is.  This means that I can stop traveling to Jerusalem for supplemental therapy every two weeks, which is physically exhausting and time consuming as well as expensive.  He’ll be getting basically the equivalent of all the services he’s currently getting, but it will all be within a five minute walk from my home and with the same therapists so the continuity of care will be improved.

    Since Yirmiyahu was four months, I’ve taken him almost weekly for reflexology and massage, but with my travel to Jerusalem I had to schedule this less frequently.  He was getting massage at Shalva, but now we’ll be able to resume more regular visits to our naturopath.  Financially, it works out about the same since each trip to Jerusalem is approximately equivalent to one session at his naturopath, but he has more time and services with our naturopath.  So there’s actually a gain all around for me and Yirmiyahu.

    I now feel very positively toward this doctor, and I think she feels the same way toward me, that we are partners in working together to help Yirmiyahu. This is how it should be but it’s a very different feeling than we began with.  In the end, my original hope for a productive meeting happened, despite it seeming totally impossible in the middle!

    Avivah

  • Yirmiyahu – ten months old today!

    How time is flying – it’s hard to believe that Yirmiyahu is ten months old today!

    Yirmiyahu was playing happily on the floor for quite a while this morning, when ds5 came to tell me he fell asleep there.  It was so cute that I went to get the camera to get a picture.  Instead of a picture of him sleeping, we got this shot instead, as he sleepily opened his eyes and smiled at me before falling right back asleep.

     

    Yirmi - ten months

    How we love this boy!

    Avivah

  • Yirmiyahu’s latest accomplishments!

    This has been a very exciting week and a half for Yirmiyahu!

    Yirmi, 9.5 months

    One of the challenges of T21 is hypotonicity, which means that he has low muscle tone.  For this reason, children with T21 have to work much harder and it takes them longer to do the things that I took for granted with my other kids.  With Yirmiyahu, even our youngest (almost 4) is excited about his accomplishments!  All of this is even more gratifying since Yirmiyahu became extremely hypotonic when he got so sick; he lost all muscle strength and control for a while, and it’s really wonderful that’s he’s back on track.

    As Yirmiyahu approaches his ten month birthday, here are some things he’s doing.

    Firstly, as of a couple of weeks ago, he independently holds his bottle and feeds himself.  We worked on helping him keep his hands on the bottle for months, and it was really nice when he had the muscle strength to be able to do this.  We hold out his bottle in front of him and let him take it himself and put it into his own mouth – this is really cute to watch.

    Secondly, he began rolling from his back to his stomach.  He’s been rolling from his stomach to his back since he was two weeks old, and from his back to his side for months.  But until this week he needed a very slight assist to make the final turn from his side to his stomach.

    He was moving around on the floor, but now it’s noticeable – he turns himself totally around in a circle (180 degrees), moves backwards, and inches forward.

    Before he went to the hospital, he was able to hang in the air supporting all  of his weight while holding onto our thumbs.  This was a big deal – when I first read about this exercise I couldn’t imagine him ever being able to do it – but he did, until he was hospitalized. Then he was too weak.  That is, until this week!  He’s getting strong again!  This is important for his grip and will later assist in his fine motor skills. (This was something we’re doing based on Glenn Doman’s work.)

    And he now sits totally independently without support!  (I asked dd to hold her hand behind him as a precaution while I took a picture so that he didn’t suddenly topple over.)

    Doesn't he have good posture?
    Doesn’t he have good posture?

    He wasn’t doing any of this (except the bottle) a week and a half ago when we took him to Shalva in Jerusalem, and I’m looking forward to them seeing his progress!  (Since they understand the challenges of infants with T21 as well as what a normal timeframe for various accomplishments is, they’ll be much more excited about this than his regular therapist.)

    It’s also gratifying since we’ve helped him develop physical strength and development of the core muscles (that are needed to sit or turn over) by giving him lots of time on his tummy – not what his therapist recommends, but his results are better!  She’d like to see him practicing standing for at least an hour a day, but our goal isn’t for him to stand until he has the muscle strength to support himself well.  This was our goal with sitting as well – we felt that when his muscles were strong enough, he’d sit, and so it was!  (For you homeschoolers out there, you may be reminded of things I’ve written about teaching children to read and you’re right, it’s a similar philosophy in a different framework).

    The next major goal is crawling, which he’s already showing the beginning signs of.  This is something his regular therapist wants to forgo – she wants to work on standing and get him ready for walking – but it’s so critical to his development that there’s no way we’re skipping that.  Lest you think that we’re tightly focused on his physical accomplishments and constantly doing therapy with him – we’re not.  We’re enjoying every day with our delightful Yirmiyahu!

    Avivah

  • Why use the term Trisomy 21 rather than Down syndrome?

    >>Why do you use the term Trisomy 21 rather than Down syndrome? Do people even get it?<<

    The decision to use the term Trisomy 21 on my blog was initially based an intuitive feeling rather than well thought out reasoning.  This in part was probably because this was the term used on the sites and blogs of those whose approach towards their child with T21 I had an affinity towards.  These parents are all proactive, believe in the inherent intelligence and capability of our children, and are dedicated to doing whatever they can to help their children overcome the various challenges that come along with T21.

    But the decision to continue using this term was based on history and my feelings about that.  In 1866 Dr. J.  Landon Down identified a number of characteristics that this group of people often share, and the syndrome he noted was named after him; hence Down syndrome.  The physical symptoms he noted were accurate, but his ideas about what led to this condition were not.  He attributed the condition to a ‘reversion’ to the ‘mongoloid race’ and that the evolutionary process had reversed itself and these people represented a backsliding from the superior Caucasians to Orientals, at that time viewed as inferior.  This was a racist perspective that was reflective of the times during which he lived but is not at all in line with our beliefs nor our knowledge today.  Interestingly, after his death one of his own grandchildren was born with Down syndrome – it makes one wonder how different the conclusions he might have come to would have been had he been alive at the time of  his grandchild’s birth.

    For close to a century those with Down syndrome were institutionalized, ignored and considered unworthy of existence.  (Well, unfortunately this last one is still very true today, which is reflected in the 90% abortion rate of babies with T21.)  These children do have unique challenges in various aspects of their development that need to be mediated in order for them to maximize their potential.  However, being institutionalized at birth and ignored for their entire upbringing except for the most basic of physical care wasn’t conducive to overcoming their inborn challenges, and not surprisingly, these severely neglected children grew up very underdeveloped cognitively and physically.  (I say not surprisingly since all children raised in institutions and ignored for throughout the course of their lives grow up with severe delays.)  Unfortunately, the impression most people have about people with Trisomy 21 is too often based on the Down syndrome stereotype that we are moving past in our generation.

    What caused the condition that was originally termed Down syndrome has been shown to be not at all related to morals (as assumed by Langdon Down) but to genetics, when a baby is born with three copies of the 21st chromosome rather than two.  Trisomy 21 is a term that accurately describes the medical reality.  When you hear the term Down syndrome, that too frequently conjures up a negative picture, and it is this picture that terrifies parents when prenatally they are told their baby is at risk for T21 or after birth it is confirmed.  This picture is being redefined as our children now receive the care they have always deserved but have been denied for so many years.  Today’s children with T21 will be accomplishing things currently assumed to be impossible or at best unlikely, and I look forward to seeing significant advances in the accomplishments and integration of individuals with Trisomy 21.

    Yirmiyahu is part of this growing group of amazing individuals with T21 who have a bright future and on this blog this will continue to be the term that I use!

    Avivah

  • Checking need for surgery and getting therapy services in J-m

    I’ve had a couple of extra busy days – yesterday I spent most of the day at the hospital at Nahariyah with Yirmiyahu.  We were there for follow up testing that was supposed to be done while he was hospitalized.  But because one of the doctors doing one of the procedures had less time on her schedule than usual because she was taking off for Pesach, they gave our appointment to someone they deemed more urgent and didn’t tell us until we were sitting there waiting on the last day of his hospitalization.  It was disappointing because I thought one positive of being at the hospital was that at least we’d get all the immediate medical stuff out of the way.

    Well, that’s how things go sometimes!  When they realized what had happened, they felt badly and they scheduled all three appointments on the same day so I wouldn’t have to come back three times.  I really appreciated that.  The testing was to determine how a bladder malformation was affecting his kidneys and to see how the problem could be remedied.  (This issue has nothing to do with T21.)  Thankfully his kidneys are still totally healthy, but test results have made it clear that he’ll need surgery to correct this.  They want to wait until he’s one to do the surgery, and he has to be on antibiotics until then to prevent an infection that could damage his kidneys.  We’ll go back to the hospital in another month for a detailed check of his kidneys and probably something else that I won’t know about until we get there.  🙂

    Today I went to Jerusalem (with Yirmiyahu) for our first Me and My Mommy group at Shalva in Har Nof.  They said that they’ve had an unprecedented demand recently that they don’t know what to attribute it to, but they have double the number of babies with T21 than they’ve ever had before at one time.  In order to accommodate everyone, they’re giving parents slots for twice a month instead of weekly.  (They also are cutting down the time that babies can be in the program from 2 years to 18 months.)  The babies who come weekly get hydrotherapy, which Yirmiyahu won’t be able to get because of the new scheduling and that’s kind of disappointing.  When I decided to travel so many hours for this, it was because I thought that he would get a full morning of services.  Instead, he gets less than two hours that includes massage, speech therapy and physical therapy.

    On the other hand, life is so full now that it’s a relief to only have to go two times a month!  They said that they’ll definitely have a weekly slot for him in September.  And I still feel the social benefit of being with other parents of babies with T21 is valuable.  This year Yirmiyahu is the only one at our city’s child development center with T21 (it’s possible at the other health clinic’s center there might be someone else).  Last year there were two children.  So I don’t have a support network here and often I feel quite alone.

    When I was at Shalva today, I met another mother from the north who was coming for the first time.  I was really surprised to see someone else from this part of the country because at my interview they were shocked that I was willing to come so far, as if they had never had it happen before.  I asked her what her motivation is in making the long trip, and she said that her one year old daughter only gets physical therapy once a week (like us) and there’s no other support (like us).  When I told her that was also our situation, she asked me if we were also getting intense pressure to put Yirmiyahu in a therapeutic daycare.  I laughed and told her we were.  It was so nice to meet another mother in such a similar situation!  It’s really different from the experience of mothers who live in the center of the country.

    And it was also very nice to be in a room with about ten other babies with T21.  Except for my interview at Shalva five weeks ago when I saw three other babies, I’ve never seen babies with T21.  It’s nice to be in a place where my baby is just one of the crowd.  I do feel a little self-conscious that so many parents commented about him not looking look like he has T21.  He does, just his features aren’t as strong as what is typically seen. I’m not self-conscious about Yirmiyahu, but I don’t want to be the cause of any other mother comparing her baby in a less favorable light to mine.  One mother even asked me if he has Down syndrome!  Keep in mind that every single baby in the room has T21 because that’s what this group is for.  So I told her, of course he does!  She asked if I was sure, and I told her that we did genetic testing and he unquestionably has the common form of T21 (ie not mosaic Down syndrome). She still asked me if I was sure the tests were accurate – she told me he just doesn’t look like it.

    As much as I appreciate this framework, I realized that I’m going to have to be careful not to compare his development to any of the other babies there.  It’s natural with so many babies close in age all in one room on a regular basis for mothers to take note of what each is doing, but I don’t want to.  Yirmiyahu is who he is, and just like I don’t compare him to anyone else in other frameworks, I don’t want to compare him to anyone in this setting.  I’m looking forward to getting to know the other mothers during our sessions.

    Something else I really appreciated was speaking to the therapists.  The physical therapist has a very similar way of looking at development as me, and that’s nice because I’ve already said that I have differences of opinion in how I view things and what his regular physical therapist wants to do.  It’s nice to have a professional with 30 years of experience agreeing that what I feel is primary is very important.  I’m looking forward to implementing the suggestions that were made today.

    So that’s the update on the last couple of days!

    Avivah

     

  • To put Yirmiyahu into a therapeutic daycare or not?

    Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks.  He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while.  I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen.  I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.

    I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in!  At today’s session the therapist wanted to assess where he’s at now.  During our session she reminded me about something she told me about a couple of months ago.  At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day.  It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home.  Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for.  Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework.  Isn’t it?

    A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later.  A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer.  To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling.  So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.

    To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available.  I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in.  She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home.  She repeatedly told me to check it out before making any decisions.  I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts.  It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.

    Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare.  Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now.  I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging.  When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this.  And I don’t like to sound unintelligent about something that I’ve put so much thought into.  I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.

    She listened to my response, then wanted to know why?  I didn’t talk at all about the developmental benefits to a young child of being home with  loving and supportive parents.  Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much.  This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying.  He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.

    Anyway, that’s what I didn’t  talk about, because I know how different this is from the way they see things.  The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life.  It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis.  That’s a really big difference.  And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.

    What I bascially told her was:  “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development.  So whatever we’ve done with him seems to be working well for him.  He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling.  It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”

    I often have a strong feeling that there’s an expected script and I’m not reading my part.  My part is supposed to be to along with whatever I’m told is good for him.

    I did agree to visit the daycare so that they can see that I’m a reasonable person.  I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better.  Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.

    Avivah

  • Easy bedtime routine

    For years, I would read books out loud to my kids every night.  As they got older, we read chapter books and increasingly more sophisticated material.  It got challenging to balance this with the younger kids, so eventually what I did was to have two reading sessions – the first one geared toward the younger crowd, then they’d be put to bed, then the longer session for the older kids.  This was something that I loved, but this started to falter about five years ago.

    In recent times, dh has been the bedtime reader for the littles, though he often tells stories of his own creations, which they love even more.  This is something that works great for us all – he’s busy at work all day and enjoys connecting with the kids before bed, and after a long day with the kids, I’m ready for some quiet time.

    But now dh is in the US so this schedule obviously needs to be altered!  When he first left I was still pretty sick and not up for reading.  What I did instead was invite everyone to get comfortable in my room, and then we listened to a recorded book together (a digital version checked out online via my US library system). This was great because we were able to have the shared experience of a book, and my physical limitations weren’t a concern.

    This worked out so well that I decided to continue even after I was feeling better.  Our new routine is dinner, get into pajamas, brush teeth, everyone does their evening chore, and then join me in my room for a story.  If they get there soon enough, then we have story hour; this is the ideal.  If we’re running late, then we cut down accordingly.

    A nice side benefit of this is that the littles (hmm, since ds7 had a birthday recently I’ve been wondering if I can continue calling them this…) fall asleep while listening.

    easy bedtime

     

    The only problem with that is that they are all left sleeping in my room!  But I found a solution for that, too.  I told ds14 that his evening chore can be to carry them up to their beds.  It beats doing the dishes. 🙂

    Avivah

  • Finally found a formula that isn’t an allergic trigger!

    While I was in the US, I took Yirmiyahu for alternative allergy testing, and we got some interesting results.

    Very strong allergies: cows milk (including organic and raw), goats milk (including organic and raw), sugar, all nuts, and corn.

    I had figured out most of the list through my experimental trials of different things except the sugar and corn.  Corn didn’t seem to be immediately relevant, until I looked at the two surprises that showed up as not allergens that I expected to be problematic: soy and gluten.

    The results that soy was not an allergen for Yirmiyahu shocked me, since he reacted so much worse to soy than dairy formula.  It was for that reason that after trying the many possibilities that we decided to keep Yirmiyahu on dairy formula – it was the least problematic.   So how could he not be allergic to soy if he was reacting so badly to soy formulas?

    The answer is, soy formulas are much higher in corn syrup than dairy formulas, so the allergen he was having a problem with in the soy formula was actually the corn, not the soy!

    We muscle tested Yirmiyahu on every single formula available in Target the night before we left the US to see what he could best tolerate (a soy toddler version tested best but wasn’t suitable based on his age), and then I bought all they had left.  However, we didn’t end up using much of this before his hospitalization.

    At the hospital, they asked about allergies and they then put him on a lactose free, soy free formula.  I had been wanting to get this for him for ages but was told that I needed a referral from a pediatric allergist to be allowed to buy it.  There was a seven week waiting period to see the allergist, and the long awaited appointment coincided with the day that we returned from our US trip.  But finally, finally, after so many months of trying to get a formula that won’t make Yirmiyahu sick, we received a prescription for this formula from the hospital.

    The wheezing that has been an integral part of his breathing ever since he started formula has dramatically been cut down!  It might even be totally gone but we’ll need a little more time to be sure of that.

    Before Pesach dh went to the pharmacy to buy some of this formula, but they didn’t have any.  The only formula available was in the city of Akko (Acre) or in an Arab village a fifteen minute drive away.  Dh asked a friend with a car to give him a lift to the village, so this is this is where they were a few hours before the Pesach seder.

    The formula is quite expensive and I don’t know why they make it so hard to buy it; I wish we could have gotten this sooner for him.  I believe that after the first 620 shekels a month (for a reference point, regular formula is 200 shekels a month), that the rest (about another fourth) is subsidized by health insurance, but we have to clarify that.  The main thing is that Yirmiyahu is finally getting something that his body can digest properly!

    Avivah