Medical & developmental check-ups for Nate

Over the last month, Nate has had a couple of follow ups around his health. We deliberately timed a few of these for this month, knowing that Robin and I would both be around, and trying to get a few things sorted before Robin's new job starts and Baby Bean arrives!

So a few weeks back, Nate was put back under for a through hearing test. They try to do fairly regular hearing tests at Starship, but I guess they don't trust a 3year old's diligence and focus for completing them! Wise call with Nate, he gets bored about half way through everytime (to be fair, so do we!). While being put under comes with risks that we hate (not to mention, causing our little man some anxiety), it does allow them an accurate read. Unfortunately it showed that Nate's hearing has worsened in both of his ears since his last proper read, they verbally used the word 'drifted' to describe it, but our follow up paperwork notes it as 'significant change'. His left ear still falls within normal range, inspite of this 'drift', but the right ear has worsened further. We are now awaiting another appointment to get a stronger hearing aid for his right ear, which hopefully will be beneficial to his speech too. We are not overly surprised by this as we can see there are some hearing impacts - for example he will often sign 'wait' when hearing the word 'white', and of course this is likely contributing to his severe speech delay. They will also test again in two years just to see if what we are dealing with is progressive or not. Still it is what it is, and hopefully we can get the new aid sooner rather than later.

Winter morning swing, after a fluffy & brownie outing!

We have also had numerous therapy check-in's this month. We have seen the CDT physical therapist and occupational therapist, for reviews of Nate, and advice on what else to be working on next with him. They visited his daycare to see him in action, and have formed plans to help us with next steps, around balance, co-ordination, and also working in his self-help skills for feeding, dressing, toileting etc. He is very good at getting his shoes and socks off now, as well as his pj bottoms, but we're still working on tops and trackpants, and putting shoes and socks on. He is also getting pretty good with a spoon, but a fork remains a challenge for him. Favourite food would still be hand-feeding himself chippies though!

Picnic-ing indoors with chippies and his camping seat

We also took the opportunity to catch up with our EIT (Early Intervention Teacher) from MOE this month, to talk about what Nate's future schooling options might be. I suppose I was hoping for a more positive expression of the future, and what some suggestions about what specific suburbs / schools we might be best to consider. However MOE work with all schools, and all schools are required to support kids with special needs. Clearly there are some that will be better than others at that, but it's appears that that is down to us to figure out. So over the next six months I might be visiting a few of the schools in the local area to see what might seem best. We may also be up for having to pay for teachers aid support in the years to come too - given his challenges we are likely (although not guaranteed) to get a few hours a week allocated to him but this is not likely to be sufficient to actually support his learning. So that might well mean a house move is on the cards for us....

We also had another session with Taikura Trust, to see if we qualify for any carer support. We're applied before but we were turned down, even though it was forthcoming in Nate's first year (likely because of the medical demands we faced in his first year). However Nate's anxiety, amongst other developmental things, does really limit living a typical family/toddler life. Hopefully some support might better enable us to achieve a more even keel around here, we shall see what the powers that be think this time around.

On a lighter note, here is Nate enjoying one of his favourite past-times, wrestling Daddy! That has become an evening event, and often Nate drags him into his bedroom and turns out the light, and takes great delight in being 'scared' by Daddy and then wrestling him! The squeals of delight are hysterical to listen too, but if I go in and turn the light on, I get 'waved' to go away! At best I am allowed to sit on the seat in the room with them, but only if the light gets turned off and he goes back to playing hide n seek in the dark! Here are some shots of Nate practising his chiropractor skills on Daddy....

Later this month, Nate starts private music classes which we are feeling very hopeful about! Nate loves 'Singing Rainbows' at daycare, and his group music class that he goes to on a Tuesday. We're hopeful that the private sessions will encourage his communication through music, and that we might see a lift in speech - apparently some research has shown a link, but of course this is very child-specific. With the support of our speech therapist support, Nate's signing has continued to expand, and he is also getting used to using a picture chart to point at signs/words, however speech remains pretty elusive for us. We do get the occasional word, but it doesn't seem to be something he can retain or that comes easily for him. Fingers crossed it does one day. On the up note, his receptive communication skills continue to be much stronger and he understands a lot of what we say. His negotiation skills are also developing - when asked to do something he doesn't want to do (clean teeth, go for a nap, come for a shower etc), he holds one finger up, which his way of telling us 'one more'. We have to respond verbally and with the signs for 'okay', 'one more', and followed by a clear 'finish', otherwise the negotiation will continue on and on :-). Some things are universal for 3year olds.

Finally the other change we have noted of late is Nate's eating. He used to be a dream! We would blend meat and vege for him every night, and he would chomp through like an absolute champ. Fish pie, shepherds pie, mince and vege, roast vege and roast meat, baked beans....you name it, he would eat it. Mostly still blended, as it is easier for him to manage. Unfortunately he has started turning his nose up, and will just refuse dinner full stop. In fact he will also knowingly refuse dessert or a treat (because he won't eat dinner), so calling his bluff hasn't worked at all :-(. Right now we are settling for spinach and avocado smoothies in the afternoon, and trying to get him to nibble on chicken nuggets and fish fingers in the evening. Smoothies are a success, but the other trials have been of mixed success so far. Lucky mashed potatoes and French fries are still acceptable to him though. Sigh! At least he knows his own mind!

Anyway this was just meant to be a very quick update, which has become a bit longer! Here is another quick pic of me and Baby Bean! Who would have thought we'd make 35 weeks?! :-)

Baby Bean at 34w4d

Me & Bean at exactly 35 weeks!

We do have a follow up scan tomorrow, so hoping to hear that her abdominal measurement has bounced back up, or at least continued on the same percentile. Everything has been tracking consistently around 50-60% percentile, but our scan of nearly two weeks ago showed she had dropped a little around her tummy to the 20% percentile. This caused us a little scare as that is of course what prompted Nate's early c-section - he had stopped growing at around 30weeks across all of his measurements bar his head and pretty much dropped off any percentile charts (this is natural apparently, babies protect their heads when IUGR happens). However our specialist is pretty relaxed, and says it isn't unusual for one measurement to drop off and that this is often resolved by the next scan with either the baby catching back up or just staying consistent on the new percentile line. Given my dopplers were shown to be normal at my last scan (which means the cord blood flow and placenta are working fine and carrying nutrients etc), this should hopefully be the case. But I guess if they are worried that she might have dropped further, then we might well see Baby Bean a little earlier than her planned c-section date! Lucky we are pretty well sorted now, if that is the case. But it would be nice to get a little further along if we can :-).

It proved more challenging to get a shot with both Baby Bean and Nate......of course we had to have Teddy in the shot too :-). Conceptually we don't think Nate has clued in fully as yet around Mummy's tummy. We point to it and say and make the sign 'baby', which he often repeats, but I'm not sure it's fully sunk in. Time will tell!

35weeks 3days

Update post our scan from earlier today (Mon 18th July)........everything is looking good! Baby Bean's abdominal circumference has bounced back beautifully, with everything looking great. She now weighs in at a healthy 2.8kg, and we can see hair on her head, and a little layer of fat around her tummy :-).

The umbilical doppler is also holding up well (which supports her weight gain over the last two weeks), but the two cerebral ones (MCA PI and CPR for those into the medical jargon) are less ideal - the MCA PI is just below the 5% percentile (not ideal), while the CPR is just above the 5% percentile (borderline). These are 'early signs' which could point to placenta ageing or late-stage IUGR - this means we will be watched again within the next week, and the c-section could well be brought forward. But at 2.8kg and about to hit 36weeks, we're not in a bad position! Unfortunately we weren't able to get any clear face photos today, she was far too much of a wriggly bean (post my trim latte and cheese scone!), and was more interested in sucking on her hand. We might have a thumb sucker in there :-)

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You miss the things....

Below is a very meaningful poem that speaks into both the heartache and the joys of being blessed with a special needs child like our gorgeous Nate. While it's seemingly easy to focus on the joys and the celebrations and is something we really try hard to do within our blog of Nate's Journey, the reality of both the medical and the developmental delay challenges never ever goes away, and I think this is what people who have never experienced our world, would really have no understanding or concept of.

The reality is that our boy isn't 'typical', and this is likely to be more and more apparent to us, and also to others, as he gets older. That brings with it heartache and some sadness (and not to mention logistical, financial and emotional challenges), that while par for the course, is something that can be very difficult to deal with. In fact I wouldn't be being honest if I didn't say that that really sucks at times, and it can come up and bite you just when you least expect it - usually when you see another child of a similar age do something so naturally and effortlessly, but that in reality, might not ever happen for Nate. As a parent, that cuts.

We have surrounded ourselves through Facebook with many families who face similar, and we learn from and support each other as best we can in dealing with that side of things. We look to focus on the joy that our wee man gives us each and every day, and trying to ensure that he knows only happiness and joy from all of the experiences in life that we can provide him with. He is 'our perfect' little man. X

You miss the things I haven't done,

the goals not scored, or races won.

The steps my feet have never walked,

the words my lips have never talked.

In my wide eyes you know my fear,

you take my hand and hold me near.

In children, all around you see, the child that I may never be,

Not so able, tough or agile, often tired and much more fragile.

You see the tears I've often cried, and cried them with me, side by side.

Your heart is heavy for my trials, but you wear it well,

with weathered smiles.

I know that you know, I am enough.

But I know the bad days can be tough.

You thank god for giving me to you,

but you're sad for all I cannot do,

and not because you feel let down my me,

but you can't help wonder how I'd be.

if I could do what others do,

like ride a bike or run to you.

You think of all the things I'll miss

first dance, first love,

first date, first kiss.

Yet here I am, as I should be,

not missing out on being me.

Do not fret or worry so

and make your spirit tired with woe.

And when those nights are feeling longer,

lean on me until your stronger.

Hold my little hand in yours,

peacefully we'll pass the hours.

For all we have is one another,

special child and care worn mother.

Nothing matters more you see,

than seeing all the life in me.

I don't need to be able to,

do the things that others do.

See the words I do not say,

in the smiles I give you everyday.

When I'm tired let me rest,

with my little head against your chest,

and for that moment in that peace,

let your loving worries cease.

Look at what I can achieve,

and celebrate me, do not grieve.

Please do not be sad because,

I'm not the child I never was.

Different isn't less you know,

and you're the one who told me so.

And somedays will be hard to take,

and you'll feel as though your heart might break,

but we'll bounce back,

we always do.

Because you've got me and I've got you.

© Mary McLaughlin 2016

Hanging with Teddy and his Ipad in his fort

Watching 'Annie' the musical - transfixed!

 

 

 

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Nate enjoying Singing Rainbows!

An update from Lucia at Bear park, about how Nate is enjoying the weekly music classes at Bear Park :-

 

It was so lovely to watch you joining Singing Rainbows last Friday, Nate. I liked how you took initiative and joined in all by yourself, without needing any encouragement what so ever. When you saw your friends singing and dancing on the mat, you just joined in and made the most of it. That was so nice to see. You joined in because you really wanted to, and you were confident to do so, which is great to see.

As you were taking part in the Singing Rainbows session I noticed that sometimes you would sit down and observe, and other times you would be very euphoric, giving all you had to follow the actions and music. This is such a great balance, Nate. When you are observing you are taking it all in, you are watching others and you are learning from them. Sometimes people underestimate the role of the observant. An observant has a very active role, there's so much taking place when you observe a situation. What's more, I sometimes believe that you can actually learn more from observing... taking a step back allows you to capture the whole moment in one go. So I'm pleased to see that you are actually taking some time to observe, as you can definitely learn lots from doing so!

But being active is also important, especially during such a fun session! It was great to see how all of a sudden you stood up and started dancing away to your heart's content. You were also very good at following actions, which I think is part of your great ability to observe. You can follow a whole song, doing all of the actions with great excitement.

This was a great session, Nate. Dancing and listening to music allows you to express yourself in your very own way. What's so great about music is that it celebrates uniqueness... I'm glad you were able to express yourself freely following your interest in music and dancing. I wonder if mum and dad like dancing and listening to music too... and if you ever go to the Music and Rhyme sessions at your local Library... I'm sure you would love these too!

It was great to see you participating in a group activity, Nate. It's great to see you taking initiative to share an activity with your peers, that's a great way to build relationships. But do you know what was the best part of this session, Nate? That you had FUN, and that's what it's all about. Music and dancing should always be fun and I'm glad you were able to find that joy! Look at the photos, you have a smile in all of them! I look forward to the next Singing Rainbows session, I really want to join in too and dance away with you!

And on a different day, enjoying Singing Rainbows....much excitement at the music teacher's arrival, engaging with the instruments, and paying great attention :-). Love our little man!

 

 

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33 weeks and counting!

Well here we are at nearly 33.5 weeks, which is very nearly the same gestation as when Nate was delivered! And thank goodness we have made it this far, as it's been quite the pregnancy!

I am officially off work now (although still one or two small things to take care of next week), and I think it's just as well, as I'm definitely not finding things as easy the further along that we get. Not only is the gestational diabetes getting harder to manage (balancing the insulin with the increasing pregnancy hormones, is a real challenge), but I've also been having issues with the lower right hand-side of my back, which apparently isn't uncommon with pregnancy (si joint issues). So I've been in at the hospital having physio this last week, I have Robin digging in deep to my lower back twice a day and a hot wheat bag several times a day, and trying desperately not to have to resort to painkillers (although panadol is apparently okay).

I'm really hoping that things ease up a bit and don't continue like this for another 4.5 weeks until our c-section, which is scheduled for 8.30am on Friday the 5th of August (38weeks, 1day). The c-section is planned for then, as it's the earliest the hospital will allow (unless reasons prior to this suggest a need for an earlier one), and this is particularly so with a GD baby. Lungs apparently develop a little slower than typical with GD so they are never keen to take babies out any earlier, although there is a balance as GD also causes the placenta to age quicker, so they aren't keen to leave babies in too long either as this can increase the risk of stillbirth. Then there is the challenge of the cerclage - normally that comes out at 36 weeks, but because it can cause pre-term labour, there is a question around whether they will do that then or just to hold until the planned c-section date, as they don't want the baby coming earlier ideally. On the flip side if they don't, and I go into labour ahead of the planned c-section, that might not be that pleasant! Hmmm. Decisions. Anyway the AOC team are conferring and will get back to me on the best plan. Either way, I'm still not thinking we will make it to the planned c-section date anyway, but we will see :-)

Anyway on a lighter note, here are some of the goodies Baby Bean has received of late......(and I'll be updating this blog post, if she gets given more!)

Flowers from RSLT, potted colour from Rachel

Cute little onesie from Kirstin

A cute snugly from Michelle

Gorgeous hand knitted hat & bottles from Caro

Cute onesie and bag from Lise, Patrick, Lewy, & Scarlett

Lots of hand-knitted goodies from Granny (amongst other little outfits!)

Lovely new toys and muslins from Jane

In other BIG news, Daddy has finished up after 20years at Cadbury, and now has the next month off! Robin will be starting a new job with a much smaller company on the North Shore and we are all very excited about it :-). Granny and Grandaddy have also just had two weeks in the US with Craig and family, followed by two weeks in the UK with Darryl and family, and have just boarded their river cruise through Europe, super exciting! Nate has been healthy, but then he deserves his own post so watch this space for another update on him :-)

 

 

 

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A Bear Park June update about Nate

Here is a June update from Anne at Bear Park, about our little man....

Lately, Nate has been very keen to explore the puzzles in the Kea room, most especially a block puzzle of numbers and animals. This puzzle is particularly versatile as it can be used in so many different ways other than a puzzle. Nate discovered this very early on as he found this new resource in the room.

The block puzzle was laid on the podium, facing up, forming a picture of a giraffe. Nate got quite curious, picked up a piece and looked at it. He noticed another picture on the other side of the block. He then dropped it back on the podium and picked up another one, put it on top of the first block. Then he continued adding more blocks to it, forming a tower. Nate smiled and knocked the tower off with his hand. He got really excited by the loud noise it made as all the blocks crashed on the podium. I have to say I was very startled by the noise too. Nate saw me as I got taken by surprise and laughed out loud!

With a big smile across his face, Nate rebuilt the tower, faster this time and knocked it over again, making him laugh even louder this time.

"Aaaah! It crashed again Nate! It's fun to break the tower isn't it?" I said to him laughing. Nate laughed with me as he picked up all the blocks again. A few had fallen on the floor, but Nate got up and walked around the podium to pick them all up.

Next, Nate changed the game and started to line up the blocks next to each other on the podium. Once they were all lined up, he tapped each block with his finger and then, he slid the one furthest to his right and dragged it away slightly. He then picked up the second block and slid it next to the first one and so one with the other blocks. As I watched him do this, I wondered if he was counting the blocks. With each block, Nate would turn it around to see the number that was written on it. Once the blocks were all lined up again, he put one hand on each end of the set.

During this learning experience, Nate was exploring different numeracy concepts such as counting, lining up, measuring. He was also learning about certain physics skills such as gravity and balance when building the tower. These blocks were also great for Nate to learn more about trial and error and to build the confidence in his problem-solving abilities. but most of all, Nate had fun in this learning process! The following days, Nate kept going back to the same puzzle and he continued extending on his interest and skills by revisiting the games he invented. We will encourage Nate to continue exploring blocks and other building and puzzle resources as a way to master his skills and learning dispositions.

Tino pai Nate!

 

 

 

 

 

 

 

 

 

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A Catch-up Update....on Baby Bean!

On the Bean front...we are now at 30weeks, and things are certainly progressing. At the scan last week, Bean was weighing in at 1.597kg, so already heavier than Nate was at birth - although bearing in mind that Nate had stopped growing at 30w (IUGR) and was delivered at 33w at 1.58kg.

Bean is measuring pretty much bang on across all key metrics which is pleasing, particularly given the GD diagnosis I have. As the pregnancy progresses, I have been told I will get more and more insulin-resistant, and that is certainly proving to be the case. I'm on night insulin now (only 6pts) which is helping my fasting read in the morning, and rapid acting with dinner. I expect to start rapid acting with all other meals at some stage, as the insulin-resistance increases. On the up news though, my diet is stellar, and sugar is a distant memory!! And that is saying something, for a sweet tooth fan like me!

I have been back at work the last few weeks, although am finding it pretty tough - pregnancy at 42y is not so easy, and the fatigue really gets to me. That combined with the fatigue from inconsistent blood glucose levels, has me feeling pooped pretty much all of the time. I'm planning on stopping at 33w, which is earlier than I originally intended, but by then I think the day insulin levels will kind of require it. I'm hoping we don't end up being admitted too early with Baby Bean, but frankly we're at heightened risk so it could well happen. It would be great if we made it to 35-36weeks though!!

Me and Bean at 30.5weeks :-)

31weeks exactly :-)

31w 2d

31w 2d

My awesome lead team at work threw me a Baby Shower this week also, planned early in case I have a speedy exit as we did last time! First time we have got to have a Baby Shower, so it was pretty exciting :-). We played a couple of baby games - guess the date, time, weight, height, hair colour of Baby Bean, and guess how many peanut m&ms in a baby bottle (77 to be clear!). Here are some of the photos from the day....

Front pic of my team card

Some of the inside notes..

A cool poem that was included :-)

And it also came complete with gifts! We got a voucher for Baby-On-The-Move, which will come in very handy towards the car seat and buggy parts that we still need to buy. We also got this gorgeous framed art, which Rachel put together - really special and personal piece, that will just go SO well in the Baby's room! Check it out below.......

And Des from work and his lovely wife Cathy gifted us this lovely baby basket, full of goodies for Baby Bean's arrival. (Plus a bottle of red wine for Mummy!) Cute!

Sadly, we had eaten all the cute little cupcakes, before I remembered to take a pic! They looked a little like this shot with the same cute baby items on the top, but with cream icing and vanilla base - YUM!

Here is one, slightly dented on the top that I took home for Robin to enjoy...complete with a wee hat and a rattle :-)

We haven't planned a babymoon this year, all a bit tricky with my folks away, work, and pregnancy challenges. However we did manage a day and a night away in Auckland city, just before my folks left. And that included eating out at The Sugar Club (aptly named given my GD diagnosis), and with careful menu selection and sauces on the side, I managed to not spike my sugars too much! Here we are enjoying a rare moment of indulgence.....pre having two kiddos under 4y at home! Eeekk! Not long to go now....

And to finish up, a shot of Nate, Mummy and Baby Bean resting - Nate knackered after a busy day at daycare so chilling with his ipad, Mummy trying to get her swollen feet to subside (very attractive 'fat feet' as Robin says!), and Bean just having a wee work-out with a few flips and kicks :-). Not long to go now!!

 

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