Helmet Progress

Two months ago we had Kazuo fitted for a Plagiocephaly Helmet to help correct the flat spot that had developed as a result of a neck condition called Congenital Muscular Torticollis.  On the first day of the helmet, he was a bit bemused by the whole experience:

First Day

…but he adjusted really quickly and soon the helmet – that he wears 23 hours a day – just seemed to become part of him.  He even seemed to find being rocked to sleep (which was wearing us both out a bit) a much less relaxing proposition, and soon made the transition to being able to roll about in the cot a little and then fall asleep more or less on his own (though I still have to sing to him now and then to get him to nap calmly). Here he is helmet-clad in his sleeping bag after a nap and looking quite cheery:

Sleepy Smiler

Up until now Kazuo has not been a boy who plucked at things on his head, and it is only relatively recently that he seems to notice that the helmet is there. So – as promised – the wearing of the helmet did not really pose to many practical impediments to our wee lad.  Even in the worst of the summer heat – 100+F days (~40degC  ) and 90% humidity – he coped remarkably well, though we did make sure we gave him some extra breaks on extremely hot days.

Taking a break in the heat

On another note, we did have some early pressure sores as his head grew rapidly at the outset.  It was nearly impossible to capture a picture of the worst one, but here is the image I had to send to the Orthotist when asking advice on treatment.  It took a couple of weeks of helmet readjustments and regular application of hydrocortisone cream to make this spot go away and thankfully there has not been any real scarring from the rubbing.

Pressure Sore

Towards the end of last month we had a visit to the Nurse Practitioner in the plastic surgery department who initiated the helmet process.  She reviewed Kazuo’s changing head shape and took some more amazing 3-D photos of his head (hoping to collect these on disc when the treatment is up, their cameras were seriously cool!).  It seems that our lad is right on track and is making good progress.    We have become quite accustomed to seeing him in the helmet, it will be another adjustment to see his new/normal headshape once he is freed from the confines of the helmet.

Happy and Dribbly

But here he is at 8mths looking almost ready to be free!  He is making tentative explorations in the crawling department, and the helmet does save him from some nasty bumps on the hardwood floor, so it will probably take him time to realise that his head is really just this soft little thing… But as he also becomes more snuggly and affectionate, it will be wonderful not to be dodging fat lips from the helmet as he comes in for a hug.

8 Mths

We hope to be reporting the end of the helmet in about three weeks time – amazing!  Fingers crossed…

A Big Week for the Wee Man

Last Friday our little lad passed the 6 month mark.  To celebrate this milestone, he cut two teeth and slept through the night (8 – 9 hours) two nights in a row.  I was amazed as I thought that this epic event would be a long time coming, and would involve some agony from me as I ‘helped’ him to self-settle… amazingly, it is all about his little self, and he seems to be needing us less and less at night time.  Though I think he still wakes up once now just to see me – so I give him a tiny little bottle and a cuddle and within 10mins we are back to sleep again.  Lovely!  He has also become so much more inquisitive, and his rolling around the room is more purposeful – he is managing to propel himself towards desired objects in a much more determined manner.  Here he is on his 6mth birthday, in his Kiwi Buzzy Bee shirt, trying desperately to get his hands on the camera:Kaz at 6 Mths

This past week also marked the day of the helmet.  Kazuo had been to the doctor for his 6mth checkup (the nurse announced he had a two-year-old’s head which was somewhat amusing… we both have large heads, and poor Kaz is no different!) the day before and was still feeling a bit low from the immunizations, and rather tender due to his new teeth, but his sunny little nature won through and he coped with this dreaded day very well.  We are staggering the wearing-in of the helmet, checking for developing pressure sores, and letting him get used to it gradually.  By Monday he will be wearing it 23 hrs per day – something I will still need to get used to as well.  But so far, he seems to be a little fussy as we adjust it on his head, but essentially doesn’t really notice it is there, though I suspect it is a bit awkward for him.  He still managed some lovely cheerfy smiles for me yesterday and today, so my fears of grinding down my happy little guy with invasive medical contraptions have not come to anything so far… Incredibly, the healthcare company have decided to pay for the helmet, so I feel I can be a little more positive in my feelings about subjecting Kazuo to something I strongly believe will improve his life, even if it seems somewhat undesirable right now.  And his happy little face just warms my heart.  Hopefully I will be able to report quick progress on the helmet treatment in the coming weeks!

First Day in the Helmet

As we wear in the helmet, there are still some hours in the day when he can be a ‘normal’ looking little boy, so I am getting in some last pics of Kazuo out and about with his lopsided but non-helmeted head… and we are still racking up the firsts… yesterday it was ‘First Trip to the Supermarket Without the Carseat – I Rode in the Trolley’, and he loved to look around… today it was ‘First Go on the Swings at Lewis Park’  on our way home from the vege market – and once again he was all smiles for Mama as he tried out this new fun activity.  Yayy for sunny summer mornings!

First Swing

Op Shops, Passports, Helmets and Art…

Last Monday I made a much-overdue foray to the local charity shops.  In New Zealand, we call these Op Shops (‘op’ being short for opportunity… not sure why) and they have been a favourite haunt since my teens – at the age when having a whole new wardrobe every week just meant going to the nearby Sally Army with a shopping bag and coming home with Op Shop gold.  Well, St Louis is a veritable mine of charity shopping.  And the local Goodwill is like a superstore.  When we moved in May, I began the repainting (still a work in progress) of our little eat-in-kitchen table and have been on a hunt for black chairs to match.  I found these beautiful numbers just hanging out at the Goodwill:

Kitchen Chairs

They have such a sturdy feel to them, and the covers are in wonderful condition.  Our dining room chairs are much less robust, they don’t make things like they used to – I was enjoying the musings of  No Impact Man on this very issue the other day.  Obviously we would do so much better in environmental terms if only things had a more permanent feeling…  I do hate acquiring things I don’t think I will use for a long time, or that have a feeling of flimsy impermanence about them – children’s toys are a dreadful example of this.  And computers… well, don’t get me started on built-in-obsolesence!

Another recent acquisition in our house is Kazuo’s US passport.  At least one of us can move in and out of this country with relative ease!  Our re-entry visas expired in March, so on our trip home to London this Christmas, we will have to go stand in line at the US Embassy again and apply for new visas to return to our home and work… such a strange system, it seemed odd to us that we were not given paper work for the entire time of our proposed stay, but when our immigration papers were updated in March, we realised that we would have to return to the UK for new Visas in case Akira wanted to travel to conferences abroad during the rest of our time here (which of course he does.) Our little guy will have about six different nationalities to choose from when it comes time for him to decide the country of his first allegiance… for now we chose his birthplace to make travel more expedient.  The passport arrived a few days ago and Kazuo immediately started devouring it when I gave it to him to hold:     Passport

Last week we finally made a visit to the Plastic Surgery Dept at St Louis Children’s Hospital.  Kazuo has Congenital Muscular Torticollis, a condition that was most likely caused by his cramped breech conditions prior to his birth.  He has been having regular physical therapy and home stretching since he was three months old and should make reasonable, if not full recovery from this condition.  However, it has also caused Positional Plagiocephaly, or a flat spot on the right side of his head that has also pushed his face forward on the right and his little ears are unaligned.  It is a reasonably common condition, and often self-corrects within the first year.  But lately it has seemed that maybe Kazuo’s flat spot is making slow progress, and that a better outcome for the Torticollis might be achieved if we remedied the Plagiocephaly.  This is what the medical professionals were  implying, and the Nurse we saw last week wrote a prescription for Kazuo to be fitted for a Plagiocephaly Helmet . He will wear it for 23 hours a day for about 3 – 6 months, depending on how fast his head grows. A timely parcel arrived from my aunt and uncle in New Zealand on the day of the appointment – including an All Blacks Jersey and Hirini Helmet (as we have christened him) – an All Black bear, complete with protective helmet. We hope Kazuo will feel a special bond with Hirini as the helmet days are played out…


It appears that our marvellous Healthcare Company, unlike all others, has become obscure and evasive about their criteria for these helmets – on the phone, before the appointment, they assured us it would be covered.  Since then it has transpired that they only cover a random handful of cases, and mange to sidestep the others by claiming that they are not ‘medically necessary’. We have found this totally infuriating as we would not be going down this route if it had not been demonstrated to us to be medically necessary in the first place… it is a hard place to be in when faced with a treatment that seems invasive and unpleasant (although we have been assured that the babies make a much quicker adjustment to wearing the helments than the parents) and then realise that you are forced to endure financial hardship in order to pursue the treatment.  We have railed against the negative impact of private healthcare since coming here… this is just one more bad example.  Both of us have delayed pursuing medical treatment for ourselves for more minor complaints that we would still rather have cleared up, due to the added expense we would incur.  However, we reasoned that this is a treatment Kazuo would have had in England, and we would hate for him to encounter difficulties later in life because we did not treat these problems now, when he is growing and most likely to recover well.  But I can really see how many people would be deterred from having certain procedures because of the cost involved.  It just doesn’t seem right… we miss the NHS!

Finally, with Kazuo taking lovely long naps in the daytime, and starting to sleep through the night, I have more time to be a little organised about my days.  This also has lead to thoughts of creativity.  Last year I spent most Sunday evenings with friends at a ‘Stitch n Bitch’ craft group.  We produced a great variety of lovely things and it was wonderful to be among others who were thinking creatively.  There is a move afoot now to resurrect the craft group into ‘Crafternoons’ – kindly, so that it fits in around my need to be at home with Kazuo in the evenings.  I am really excited.  To celebrate, this last weekend I finally created the mixed-media painting for our living room that I have been carrying around in my head since we stayed in Hanmer Springs in New Zealand on our post-wedding-holiday in 2006.  There was a similar work on the wall in one of the houses we rented.  However, I was also keen, since I was using Paua Shell as the main colour inspiriation, to make a representation of the myth of Rangi-nui-te-po and Papatuanuku.  Since it was a good 20 years since high school art classes, I was really hoping that it would come out a little bit like the image in my mind… usually creating art is a matter of post-hoc rationalisation for me.  Thankfully it was pretty much as I had intended, and I feel inspired to move on and try out some more ideas I have brewing, so yayyy for Crafternoons!! One of my resolutions for this year was to see if I could come up with an idea for stay-at-home-mum income generation… watch this space.

Rangi and Papa

Rangi and Papa in the living room with Kazuo and me.