Team Newman / Ferme

Just a quick post to deliver some good news before I head to the hospital. Richard just spoke to Dan’s paediatrician and it looks like the results of the sleep study are pretty positive. He only desaturated below 90% once during the night and had no obstructive apnoeas, whereas on his last test, he dropped below 90% about 28 times and had several obstructive apnoeas. We’re getting the official results on the 12th May, but fingers crossed the specialist will give the thumbs up and we can stop the oxygen.

In other news, Dan has now moved on from just doing the actions to Incy-Wincy Spider and is now copying Heads, Shoulders, Knees And Toes. Lachlan has also started pointing to pictures in books – both by moving Richard’s or my finger and by pointing  his own finger. He’s very pleased when we tell him the name of the object he points too. All good signs for language development. He also gets very excited by the word cat and races to the back door anytime we say it, in the hope that he’ll see one of the neighbourhood cats cutting through our back yard.

Anyway, only a few minutes before I head to the hospital. Fingers crossed.

The results are in … and I’ll be going under the knife on Thursday. One night in hospital and then 10 weeks in a moon boot. We’re still figuring out how the hell we’re going to manage, but Richard’s got leave up his sleeve, our nanny is available and willing to help and I might fly my mother down from Queensland. All in all, we should manage somehow. The hardest thing will be stopping the boys from climbing all over me, wanting me to pick them up and give them cuddles. Hardest for me, I think…

We’ve just got through an interesting few days. It’s actually raining here in Adelaide for the first time ever, I think, and the boys are going quite stir crazy not being able to get out and about. We’re squeezing walks in between the showers and taking them for drives and to the shops for entertainment.

Yesterday morning, Lachlan managed to jam his fingers in a door. The only surprising thing is that it hasn’t happened before now. He’s so obsessed with opening and closing any door or gate. We’re quite lucky that he jammed his own fingers and not Daniel’s, because at least he stopped before he could do too much damage) Hopefully, he’ll learn a lesson. We’ve done what we can to make the doors safe, but there’s always a way they can hurt themselves.

Anyway, I might have to get Richard to post updates while I’m immobilised. I hope I won’t be out of action for too long, but it might be a couple of weeks.

According to the foot specialist, I’m most likely going to need foot surgery – and fast. I’m having an MRI and more x-rays tomorrow and I will get the results on Monday. The doc’s theory is that I have a lisfranc injury which seems to be much more serious than it feels it should be. Unfortunately, if I don’t get it fixed quickly then I may spend the rest of my life with chronic pain and arthritis. Not a happy scenario. Apparently, there’s about a three month window for getting it fixed with good results, and I injured my foot 11 weeks ago. The doc says he can fit me in on Thursday next week.

Finger’s crossed that he’s wrong and it’s just a ligament tear that needs time to heal. I don’t know how I’m going to chase two toddlers around when I can’t walk.

We had a big appointment day today and it went okay. We started with an audiology appointment to check the level of Daniel’s hearing, but the test was unsuccessful. They were intent on ‘training’ him to respond to sounds before lowering the sound level to see how much he could hear. Of course, Dan would not sit still and pretty much responded to nothing they said or did. So we have to organise a brain stem test for which he’ll need to be sedated. That’ll happen within the next couple of months.

After the appointment, Dan got to go to the hospital playground while I waited for the report. When I got there, I distracted Richard for about two seconds and Dan managed to climb into their water feature, fully clothed with shoes and socks on. Luckily we dragged him out before he decided to sit down, so only his feet were wet.

Following that, we had the usual OT session which Daniel loved. It’s a big play session for him now and I think he’ll miss it when we take a break.

This afternoon we traipsed across town to see our private paediatrician. He didn’t have much to say except things were going as expected. He’s waiting on the psychologist’s report and we don’t see her until next month. He has referred us to a private speech therapist too, since the Women’s and Children’s Hospital couldn’t supply what we were after. Hopefully she’ll be able to offer something useful. One thing of interest that he did say, was that even if Daniel isn’t diagnosed as autistic, he could still be diagnosed as having a pervasive developmental delay and that entitles him to the same (or similar) funding and assistance as autism. So hopefully we won’t be left fighting the battle on our own.

The long awaited appointments with our public paediatrician were cancelled today. They haven’t been rescheduled yet and won’t be for a couple of days. So we’re left to wait longer for the results of Dan’s sleep study. I don’t know how long we’re going to have to wait for another appointment either as I believe the doc has about a three month wait.

Daniel has become very mischievous over the last few days. He’s learnt to climb on the coffee table and likes to stand up because it creates a great furore. He thinks it’s hilarious when Richard and I rouse on him. He’s also become quite a bossy boots and demands to be front and centre at the computer when I’m trying to blog, as seen below.

Jeni Blogging

Lachlan is similar, but he’s watching TV at the moment. He had a fall this morning and spewed all over our poor nanny.

Bloody hell, Dan just bit me.

As a few people have reminded me, I really have to get my act together and get back into the game of blogging. A lot has happened since I last posted and I think it’ll take me a week to cover everything. So I’d better get started.

Birthday

Yes, the boys are now two with their birthday being exactly a week ago. They still have absolutely no idea about birthdays or presents or anything, but we had a couple of bbqs in their honour the weekend before. They were both very nice events, and I think the boys quite enjoyed the company, and they certainly liked their presents. It’s nice to have some new things for them to play with. Here are some pickies from their birthday…

Birthday Cake

Birthday Bath

New Ball Pit

Occupational Therapy and The Other Doctors

Dan is still going to his occupational therapy and he really loves it.  We think it’s really helping too, as he’s much more confident in new places and he once again loves the swings at the park. We’ll keep going for a few more weeks and then maybe take a break for a while. We’ve also seen the Infant Development Team at the Women’s and Children’s Hospital in the last month and they’ve now referred Dan to Disability SA. We’re still waiting to hear from them, but we were warned it would take a while. Dan is still going to see the IDT one more time so they can make sure things are moving along. They’ve also recommended that we see a private speech pathologist who is an expert in a technique call DIR/Floortime. They were all really keen that this be the model of therapy we use for Dan, and it seems that our occupational therapist agrees, which is a relief. We were told that the speechy often recommends we get occupational therapy before starting speech therapy, so we might actually be ahead of the game for once.

We are going to see our public paediatrician on Monday, when we hope to get the results of Dan’s latest sleep study. He finally got a review in late March, after 10 months of waiting. We were originally meant to go in July last year, but nobody would listen when I kept phoning to ask what was happening. Then in January, Richard had finally had enough and started threatening to make an official complaint if we weren’t contacted by the respiratory doctor immediately. Of course, the doctor was on leave so we had to wait two weeks. Even then we didn’t hear from him and found out that our request for him to contact us had been lost (surprise, surprise!). In actual fact we still haven’t heard from the man himself. Instead we got a phone call to say that Dan was booked in for a sleep study in early March. What’s the bet that the doctor took one look at Dan’s notes and realised that he should have been reviewed last July, and contacted the sleep unit to get him in as an emergency!? If only I had been more persistent and forced the bitch of a receptionist to listen when I first called to see what was happening, insteading of allowing her to fob me off by telling me we just had to wait. Anyway, our luck continued and the original study was cancelled on the day of the test, at which point Richard did make an official complaint. It was really beyond a joke. Thankfully they rescheduled in two weeks, so we didn’t have to wait that long and the night itself wasn’t the nightmare I had expected. Dan coped quite well as long as he was distracted by his books or Pocoyo (a recorded TV show). After he finally got to sleep he actually slept quite well.

Lachlan is also seeing the paed on Monday and is being referred to the Infant Development Team. I think they’ll only see him once or twice and they’ll decide whether or not to refer him to Disability SA too, if only for speech therapy. We’ll also try to get the paed to refer him to the same private speechy that was recommended for Dan. At least he’ll be in the system so we’ll know he’s being looked after too.

Next week, we’re also seeing the private paed, but I don’t expect much from him because he won’t have much more information than he had last time. Dan won’t see the Autism psychologist until next month, and that is really the big test. Still, it’ll be good to touch base and get the referral to the private speechy if we can’t get that from the public paed. Dan is also seeing an audiologist to check his hearing on Tuesday, and finally, I’ll be seeing a foot specialist on Wednesday to see why the hell my injured foot is refusing to finish healing.

Other

I’m sure there are many anecdotes about things that the boys are doing or have done recently, but I can’t think of too many off the top of my head. I’m sure it’s better to write about them as they happen rather than adding them to the end of a really long post. I will say, however, that we now have a back lawn which is fantastic and the boys love it. And I’ll try to keep posting more often about the other stuff.