Yirmiyahu update – 20 months

IMG_2282Time is zooming by and Yirmiyahu is already 20.5 months old!  And since today just happens to be World Down Syndrome Day, it’s the perfect time for an update!

Where is our busy little man up to now?

Climbing – For quite some time Yirmiyahu would climb up the first stair of our home, then go back down.  When I take him to the park (usually at least twice a week – all the  kids there know that’s his spot!), he spends most of his time at the bottom of the slide, standing next to it, climbing up and then climbing down.  And then a couple of weeks ago, literally from one day to the next – he climbed up the entire spiral staircase in our home to the second floor.  This was very exciting – he loves it and has a great time waving to us from under each step as he does us – but it’s also a little nerve wracking.  A couple of times I found him upstairs with no one in sight; both times he had climbed up himself when no one was watching him.  He’s really fast and he loves being able to go where he wants to go!

We quickly got a baby gate to close off access to the stairs and closed off the open spaces along the sides of the stairway so when he was climbing there wasn’t the fear of him slipping through the side to the drop below.  The gate works fine as long as we latch it.  For a while we were pulling it shut behind us, until Yirmiyahu began to push it open and then climbed up. A day or two after this,  I watched him push the gate open, climb up a step, then turn and carefully pull the gate shut behind him – funny to watch since he’s copying what we do but the reason we close it behind us is to keep him out!  Since I want to encourage his climbing, I let him climb as often as he wants as long as someone is there to keep an eye on him.

Standing – Yirmiyahu began standing independently a couple of months ago and has gotten much more stable.  He regularly cruises around holding on to the couch and chairs, and in the last week he’s begun taking a step in the direction he wants to go in before falling into the arms of the person he’s going towards.  I have a feeling that he may begin walking as suddenly as he began climbing the stairs, with a long preparatory warm up period as he builds his core muscle strength.

Signing – we’ve taught Yirmiyahu some basic words in sign language.  Recently he signed something to one of the older kids, who showed me the sign and asked me what Yirmiyahu was asking for.  It was the sign for a pear and we had only showed him the sign two times a couple of minutes apart a week before – funny that Yirmi remembered what it was better than his older siblings!  He’s done this a couple of times, signed something a week after having been shown the sign, and at the time we showed him the sign we thought he wasn’t absorbing what we were showing him.  We don’t plan to use sign language extensively, but want to give Yirmiyahu the ability to express himself to some degree while his verbal skills are still minimal.

Reading – Several months ago we began an early reading program with Yirmiyahu.  I began using the BrillKids Little Reader program, which is excellent.  If I’m on top of things, he watches this twice a day but it’s challenging since his siblings all run to the computer when I put this on for him and then he gets distracted looking at all of them rather than the screen.

A few weeks ago I began printing my own own flashcards to supplement his computer program.  Each card is half the size of a letter size piece of paper, with a picture of the word on the back.  I laminated them and use them to quickly flash through each side with him.  I thought this would hold his interest more than the computer program but it hasn’t worked out as much like that as I anticipated.  Interestingly, the set of cards he likes best are action words – and that’s the only set I  made that has no pictures.  I act out each word as I show it to him and he cracks up at some of my charades so no surprise that it’s the most interesting group of words!

Ideally it would be best to use the same five to ten cards each day for a week and then rotate and add in new cards.  But I’m not that systematic.  I made almost 180 cards (clothing, body parts, transportation, colors, toys, common animals, wild animals, nature, action words and things you eat with) and I pick up whatever set I think he’ll be most interested in at that moment.  Part of why I’m relaxed about this is because I think of this as reinforcing his computer program so I’m not strict about the structure.   Sometimes I show him the cards a few times a day, sometimes just once, sometimes in addition to the computer program and sometimes not.  It takes less than a minute each time so it’s not an issue of major time, the bigger issue to is to remember to take them out.

The Little Reader program has options for customization that I haven’t explored much yet.  However, I did do some customizing to create a new category called ‘family’.  This includes all his parents, siblings, and this week I added in my mother and her husband.  (I’ll add other family members as time goes on.)  For each person, I’ve loaded two or three pictures.  In addition to dh and I, dd17, ds15, dd13, ds7, ds6, and ds4 each did an audio recording of their names.  So what happens is Yirmiyahu sees the name of each person flash across the screen while hearing that person say their name at the same time, then sees a picture of the person as the name is repeated.  It’s the same structure as the general program but with words that mean something to him.  I play this category kind of as a reward for him after doing his regular words – he LOVES this.  He sits there absolutely mesmerized and can watch it play again and again.   This week I changed the order of all the pictures and people so it’s not predictable what the next screen will show, and in honor of Purim I added in fun pictures of each person in costume.

I can’t really tell you how much he’s picking up or not at this point (though I think it’s highly likely he can at least recognize the names of the twelve immediate members of our family) since my focus is on providing stimulating input, not on testing.  I’d like for him to be reading English well before we start on Hebrew reading and my general goal is for him to be reading English by the time he’s five or six.  That will take work but I think it’s realistic for my relaxed way of doing things.  I know of people who have taught their kids with T21 to read at 3 or 4 and though I’m sure Yirmiyahu is capable of it, I don’t know if I’m capable of the necessary consistency!  My goal is more of a general direction to move towards, not something rigidly fixed in my mind and if we achieve it a bit earlier or later is fine.

Growth – Yirmiyahu has hardly grown since I posted two months ago that we had finally seen some growth after beginning to supplement for cerebral folate deficiency.  I really don’t know what to do about this.  I posted a picture in my last post of him a year ago at 7.5 months and he weighs only five pounds more now than he was then.  It’s not that having a child who is small for his age is inherently disturbing to me; kids come in all sizes and the outside doesn’t determine the value of what’s inside.  My issue is that he has the same tall genes as everyone else in our family and to be so small is a result of that pesky extra chromosome suppressing his growth and that’s a medical malfunction.  Sometimes I feel like I’m failing Yirmi that I can’t figure this stuff out for him.

Health – Overall Yirmiyahu is doing great – he’s strong and healthy and smart!  There is one medical issue that needs to be taken care of now.  We had an appointment with the nephrologist this week who was appalled that he hasn’t been treated surgically yet for the bladder malformation and felt it was medical negligence that the other doctors recommending leaving it this long with it being at the most severe level, when it could be taken care of so easily surgically.  It’s hard to know which doctor to trust when they’re both saying such different things and both are supposed to be good doctors.  At this point my preference is to do surgery; once it’s taken care of we never have to worry about this again.

The alternative to surgery is ongoing daily antibiotic treatment, which the first urologist and I have a difference of opinion about.  He felt there’s no downside to taking the long term daily antibiotic route (for the next five years at least) and I feel this will seriously compromise his health.  Yirmiyahu restarted antibiotics again a couple of days ago and as of today his stomach is already a mess. I’ve worked hard to rebuild his gut after he went through so much in the NICU and then the PICU and it’s like starting at square one again except if he has to be on antibiotics every single day, that doesn’t leave time to help him grow good gut bacteria.  He’ll need to stay on antibiotics until he has surgery.

The earliest appointment I could get with the recommended urologist is in two months; the appointment is to discuss surgery and we’ll schedule surgery based on his feedback.  I don’t have any idea when we’re moving so I hope we’ll still be here by the time the surgery is scheduled; otherwise I’ll have to start this all over again with different doctors in the area that we move to, and that will delay the surgery by several months more.  Right now I’m making plans with the assumption we’ll be here and if something changes, I’ll adapt my plans at that point.

What isn’t new is the joy and light this little person has brought into the lives of us all!  I love watching my older kids come home each week and interact with him – they are so in love with him!  I joke that his first words are going to be, “Oh my gosh, you’re so CUTE!” because he hears this all the time.  They younger siblings enjoy him but the older kids ages 13 and up simply delight in him!  Last night one of the kids said he hopes Yirmiyahu doesn’t get spoiled because of all this adoration he gets, but I told him a child can’t be spoiled with lots of love.  They can be spoiled when they’re allowed to act badly and it’s considered acceptable, because after all, he has a disability.  But to return some of the love he radiates out to us all back to him isn’t spoiling at all!


(This post is part of the Day in the Life Series that is part of World Down Syndrome Day.)

12 thoughts on “Yirmiyahu update – 20 months

  1. Thanks for the update. It ‘s good to see Yirmiyahu is doing so well.
    I do have a small question though. I remember that in the past you were extremely relaxed about teaching a child to read, had no set age-goal and did not actively teach him unless the child came to you asking for it.
    Why is it so different with Yirmiyhau?

  2. Oh, he sounds like such a smart (and clever!) little guy. I have no doubt that he is a complete delight.

    What would be the harm to him if he continued to have delayed growth? Is there a medical threat to his health?

    I’ve known several parents with older children with T21, and their kids were very difficult to handle during a meltdown, or when they decided to “pull a runner”.

    1. My worry about his growth is that:
      – if something’s wrong, I want to correct it if possible;
      – I’m worried that his small stature is just one symptom of a broader issue that may have a significant impact on his development if not addressed. For example if this were an issue of hypothyroidism, that would have huge connotations. Not saying this is what it is – I don’t know what it is and as of now hope he doesn’t have a thyroid issue – but something along those lines would be a serious concern. And getting the necessary medical help would be really hard since these issues tend to fall below the radar of most medical professionals unless they have extensive experience with T21.

      1. Yirmiyahu is so cute! It’s great to hear how well he’s doing.

        About his growth, I’m sure you are aware that there’s a separate growth chart for kids with Down Syndrome, right? Kids with Down’s statistically are smaller than typical kids, so you wouldn’t really expect him to be as tall as your other kids were at this age despite the genes for being tall. The average adult male with DS is only about 5′ 1″. Don’t put yourself down for not being able to change that – that would be similar to blaming yourself for the shape of his eyes or the lack of hand crease that comes along with that extra chromosome. This is just one more feature of Down’s, and it’s not one that’s going to hurt him in life.

        1. Thanks for the reassurance, Kayla.

          It’s no longer recommended to use the DS growth chart. With that comes the understanding that our kids should have more typical growth patterns than they do. You’re right that being short isn’t such a big deal and maybe I’ll just accept that, but what I don’t accept is that it’s okay for Yirmi to be untreated for growth issues because everyone with T21 is small. Maybe they should all be treated since something obviously isn’t working as it should?

          1. Btw- writing this with a smile! – Yirmiyahu does have a hand crease. And when it comes to the shape of his eyes, I don’t mind whatever the shape of his eyes are but I do realize it’s not a strictly superfical issue and the placement of facial bones affects ones health. I’m addressing his facial structure and resulting problems with cranial osteopathy. As a result he no longer has the goopy eye that used to happen often in the eye that had a more typical ‘Down syndrome’ shape. A doctor could tell me that his goopy eye or breathing issues are just the way it is because he has T21 but I’ve found many of the things that are typical for the syndrome don’t need to be like that; maybe the problem can’t be eliminated but outcomes can be improved by taking different kinds of action. So my frustration is that I don’t see being small as an immutable part of T21 and suspect that there are ways to improve this outcome. Does that make sense?

  3. I was also wondering about the push to read early…..and if you want kambucha I can get it sent to you with my daughter’s scienceteach who lives in Karmiel.

  4. I am really surprised bh’ that yirmiyahu can be crawlling and moving up steps, /standing etc. for his age. and the cards and reading is an amazing idea. you have kn’h been putting so much into your little one. he probably makes his thoughts and wants known!

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