The last year.

Wow. It's been a year since I last posted.

I guess, to be honest, I stopped posting because I thought Lachie was doing okay. His Hydrocephalus didn't need treatment (shunting) and he seemed to be doing fine health-wise. And he still is fine health-wise. Developmentally, however, his delays have become more and more pronounced as time has gone on.

He turned 2 on the weekend. We had a great rainbow themed birthday party for him, and we celebrated the awesomeness that he is :D

Yesterday, however, we had his Griffiths Scale assessment at the Child Development Centre (CDC). It confirmed the diagnosis of Global Developmental Delay (GDD). Sooo.. we've got intensive therapies ahead (physiotherapy, speech therapy and probably occupational therapy) and we're also going to have another MRI for him to see if the Hydro has worsened and whether it perhaps has caused the GDD and needs treatment.

I'm crushed. I mean.. I can't say it's a huge surprise - he's delayed in many areas, but geez I'm hurting. I'm hurting so much. I feel like I'm mourning the loss of a child - not a child that died - but the IDEA of a child. The one I had in my head when I was pregnant, and when he was born. The one who would be intelligent and geeky like me and his Daddy. The plans I had for him and his future.

That's not to say that these things still can't and won't happen - it may do. But there's no ignoring that my baby boy has a disability. After the age of 5/6 (when they're assessed when starting school) it can lead to a diagnosis of Intellectual Disability. Gosh, that kills me.

What does his future hold? Will he completely catch up in a few years? Will he ALMOST catch up but just be a little behind? Will the gap grow bigger and bigger and he be severely behind? There's a good chance he will remain quite behind - he may catch up a bit, or not at all. He may need to be in special education classes. I hate the unknown. I hate not being able to control it and foresee it. I hate the "watch and see" game.

I can't even begin to put into words the guilt I'm feeling. We started physiotherapy with him about 9 months ago when he could only bum shuffle, and not crawl. He really hated going, was afraid of the therapist and hated us doing the exercises with him at home. Why didn't I persist? Why didn't I keep pushing him? I guess that's the shitty thing about hindsight - I had no way of anticipating just how delayed he would be at the age of 2. I wish so desperately that I'd tried harder. That I'd been his best advocate - the Mama that he really needed me to be, and do everything I could to help him along in his development.

I know that age 2 is "early intervention" and many people don't get onto therapies etc until age 4,5,6 etc ... but it still doesn't seem early enough. I feel like I've failed him so badly. I hate the should-haves. I have no way of knowing whether even with therapy earlier on he would still be at this same stage or whether he'd have progressed further by now - but gosh the guilt hurts so very much.

I'm so sorry my beautiful baby boy. Mama failed you.


The birthday boy -

The results.

We saw the paediatrician today and got the results of Lachie's MRI.

It confirmed that he does have mild hydrocephalus. He also has a Chiari Malformation type 1, which is where the "tonsils" of the cerebellum (the part of his brain at the top of his neck) protrude past the opening at the base of the skull instead of stopping above it. Type 1 is the mildest form of this so that's good. It shouldn't be an issue because the scan showed the CSF was still free-flowing around it, so there appears to be plenty of room.

It was agreed by multiple doctors that no treatment is required at this time (his Dr was in a meeting with the head of neurosurgery, head of neurology and head of radiology and put Lachie's case forward to them for opinions!!)  - as long as the intra-cranial pressure doesn't build up, of course.

Once his fontanelle closes up and the bones of his skull fuse we'll see if it builds up or not, and whether it becomes an issue. It's most likely that he will just be fine though - his development is delayed for now, but he'll catch up and in a couple of years nobody will ever know anything was ever wrong.

So we have a follow up appointment with his paediatrician in 3 months, and an appointment with a paediatric physiotherapist to work on his legs and his reluctance to stand up, but it looks like all is good! :) :)

Yay Lachie :D

We survived the MRI!

Well we managed to survive the MRI!

It was a VERY long day as Lachie had to fast from 7am, and the scan wasn't until 1:30pm. The plan was to get as much milk into him as possible before 7am so that he'd be full, but he refused his morning bottle - typical, huh? After 7am we could only give him water so we kept on trying to get water into him and he took a bit of it. 

He was actually REALLY good considering he was hungry - I think the hospital and new surroundings distracted him somewhat. He started getting a bit grumpy about an hour before the scan but we just kept on trying to distract him and walk around and stuff.

Due to a rare disorder that Matt has, Lachie couldn't have the gas to knock him out before they insert the IV anaesthetic, so we had to give him a pre-med sedative instead. It kicked in very quickly and he was really spaced out and dopey - slurring (even though he doesn't say words!) and flopping his head around and laughing at nothing - Mum and I were cracking up at him!

When they took him in to be anaesthetised I went with him, to help distract him and calm him - it was really unnerving seeing him kind of "lifeless" when the anaesthetic took effect. I leant in to give him a kiss and say I'd see him soon, and he was just lying there :(  I think that was the worst bit of it all - I knew he'd be fine and wasn't worried about the medical effects etc, it just made me feel really lost to leave him behind like that.

He was in the MRI for about an hour and then in recovery for a bit til he woke up. He was groggy and dopey again - but it only took a minute or two after I picked him up to realise "HEY, I'M HUNGRY!!!" and he spat it. A nice big bottle of milk and some Mama cuddles fixed it all up.

We have our paediatrician appointment this coming Monday, so we'll see what the results said and what the verdict is - whether we have to do anything, or just wait and see, or what.

Hmmmm....

MRI Day

Today's the day for the MRI.

We're first on the afternoon list, which means Lachie has to fast from 7am. The idea was to get as much milk into him before 7am so that he'd feel full for longer and not be too unhappy.

Typically, he refused his bottle and has barely drunk anything since about 1:30am - ughhh!

Thankfully he can have clear fluids - so we've been giving him water and he's taking it happily enough for now. 

Here's hoping he doesn't get too distressed because there's still a few hours to go :(

Welcome

I've had a few family and friends asking for updates on Lachie's ultrasounds and Drs appointments so decided to start this blog to keep it all together on one page.

Most of you will know that Lachie was born early at 36 weeks, due to my Pre Eclampsia - he was a small baby and spent a short time in the Special Care Nursery on CPAP and in the humidicrib.

At birth his head was disproportionately large (around the 90th+ percentile, while his length and weight were below the 3rd percentile) but most newborns look like that so we weren't concerned.

He has been a couple of months or more behind in his milestones and development, but we've attributed that to the fact that he was early and that babies just develop on their own time.


Around 7 months his paediatrician decided to send us for a head ultrasound because of his large head, but didn't think anything was really wrong - just precautionary.

That ultrasound showed "prominent ventricles" but the radiologist said that because they had no previous images to compare it to they couldn't tell if it was significant or not, or whether his brain just looked like that normally.

The paediatrician thought that again it was just precautionary and it would turn out to just be benign macrocephaly - in the family or whatever.

We were referred for another ultrasound 3 and a bit months later (last week) and the results this time were a bit more worrying - 

There is persistent ventriculomegaly with dilatation of the lateral and third ventricles. This appears to be disproportionate relative to that of the extra-axial CSF spaces and such is not typical of benign macrocephaly of infancy. Aqueductal stenosis or other obstructive aetiology could give this pattern. Is Lachlan's head circumference crossing centile lines? MRI would be advised for further evaulation. 

So it looks like it likely ISN'T benign, and may be a form of hydrocephaly. Hopefully whatever it is is mild enough to not require shunting, but we'll see I guess.

We have his MRI tomorrow, and I think I'm feeling more sick about him being anaesthetised than I am about the results, at the moment!

Even if he does have hydro, it seems to be quite mild as he doesn't have a severely large head or bulging forehead or sunsetting eyes or anything, and he's quite happy and stuff, just a few months behind in milestones etc.

So... I guess we'll see how it goes.