Looking better

This is Ashlee's lip - post incident day 1 (so about 24 hours later)

Outside - a little swelling, not looking so bad

Inside - not so great.....

She is feeling a little better but still quite sore and I guess losing weight because she can't eat much at all. Even drinking is hard!

Here we have Zachary in his Theratogs

From the front....

And from the back....AFO's and all.

This was the initial try-on. These are normally worn under the clothes. Our Physio suggested taking these photos for reference as it can get a little confusing in the beginning apparently. Wearing these 4 hours a day is like doing 50 hours a week of hands on therapy. Zach is still tolerating them at the moment, he is pretty good with most things.

Not much else going here. A little grocery shopping today, I have also been doing a few 'photo shoots' for people too. All free of course and all to get up some more practice. Live near me and want to get a free shoot with a CD of all the photos to help me get up more practice? Email me.

Here a few from my shoot with my gorgeous little nephew Caleb....

He was such a darling little boy but eventually it had to come to an end....

I also did a small Christmas photo shoot for another friend of her two sweet little boys, making them into a holiday card for her.

A close friend of mine had a stunning little 6lb baby girl on the 26th and one of my gifts to them is a newborn shoot. Lots of fun playing around and of course snuggling with sweet little newborns!

That's all for now, here a few photos of my clan to finish with.....

(Favourites of the 'out takes')

Hmmm.....

I haven't totally fallen off the face of the planet - I'm still around but things have been pretty hectic here. So, what have we been up to...??

In general:

As most people know, moving house is usually a pretty big thing. And time consuming! Who out there was still unpacking boxes 3 weeks later? Moving with 2 x 2 year olds and a 5 year old that just wants to be helpful is very tiring but thankfully with a bit of help we got here and we are loving it. The house is pretty much set up, I'm now down to adding our own touches. Pictures on the wall, rugs etc. Than all that's left is sorting out some boxes still in the garage into chuck, donate and sell piles - not really looking forward to that. Really tempted to just chuck but I really can't see things that are perfectly good go to the dump! Hoarder much...??

Now down to us:

Ashlee.....has been sick, a lot, lately. I really don't know whats up with that. Monday she had her high school orientation day but by the time she got home she was like death warmed up and has been home from school ever since. She will stay home again tomorrow just to be sure and hopefully is right for Monday. Her finger is finally de-splinted and tomorrow morning we are heading back to the OT for a final check up. All should be good as she hasn't any pain lately, a good sign that after over 5 months it is finally healed! Other than all that it is all about decorating her new room and getting ready for high school next year.

Mitchell.....is starting school in January. I can't believe my little boy is that grown up! Last Thursday and today we had his Kinder Orientation. He enjoyed it and I think he will be fine next year. Compared to the other kids he is HUGE! People do comment on his size and are surprised when I tell them that he is only 5 but never thought anything of it until I saw him with these other children. He is considerably taller than them and taking after his Dad he is pretty solid too. By solid I mean solid not fat by any means.

Zachary.....is advancing nicely. He no longer gives wearing his AFO's a second thought and they are just a normal thing for him now. Zach has decided that getting around at home is much nicer when he is pushing a little ride on 4 wheel bike with a handle than his walker so we now keep his walker for going out. His physio is really happy with this as he was getting to 'good' with his walker and not really stepping properly just dragging and sliding and relying on the walker to hold him up. With the bike he has to work a little more to stay up right and has to slow down and step properly. We are finding that he tripping on his feet a lot more now as his right foot turns further and further in. We are really trying to work on his leg with physio at the moment but we are also looking forward to botox and hoping that after December 14th and some intensive therapy for a few months following things might just be a little better for him. A wheelchair is on order at the moment but really long term we are hoping we know he won't need it. Especially with his determination and great rehab therapist Damien. He has CP himself and really gives us hope!


Anna.....well Anna as of yesterday has been officially diagnosed by our Paed with Asthma. We now carry Ventolin and a spacer EVERYWHERE as he feels she is not in the best shape at the moment but he has also put her on Singulair to take daily as a preventor. My little girl has been constantly unwell since she was admitted to hospital with pneumonia last month and is still not back to her normal self. We are going back to the see Dr Rosier again in a month for a follow up check up and take it from there. At the moment she is a bit of a mystery. Anna is also sporting a cut knee after falling twice on the same knee and also a cut and bruised cheek after a run in with the window sill in the play room. I think both of things can be put down to her vision as every time she refuses to wear her glasses we end up with some kind of fall. We see the Eye clinic again in March to reassess her for surgery.

Me.....I'm going well, a little tired from all the running around to appointments and late nights but getting there. I'm sick of these heat though! Its way to hot! Carting the kids around in this heat everyday is just making everyone tired and cranky.

Next year I will be returning to study - more on that later......

I'm going to call it a night now, its nearly 10pm and I need to be up and out the door before 8am for Ashlee's OT appointment in Belconnen. I really need some catch up sleep!

But lastly just because I can.....sweet little blue baby!

Baby Caleb

It never rains

it pours!

Last week we had Anna in hospital with Pneumonia. Oxygen Sat's sitting around 88, temperature of 39 and sleeping ALL the time is how she was when we arrived at the ER. Drip in (she was so sick that she actually fell asleep while they were putting this in!), chest x-ray, bloods taken as well as a 'snot suction' hehehe.....IV antibiotics and fluids, obs done hourly.....that is how it has been here. Thankfully we were able to pick it up early and she is on the mend. We were sent home on oral antibiotics for 5 days and Ventolin - 6 puffs every 3 hours. We have just been for a follow up visit with our GP and she is still not 100%. She now has another script to continue antibiotics for another week and is to stay on the Ventolin, same dose, until further notice. Back to GP for another check up on Monday. Please keep her in your prayers.

Zachary, he stayed with Mum for the time we were in hospital. The first time he has spent a night away from me! He did OK, Ashlee is brilliant with them and really turned into a second mother. What would I do without her?!

Also some great news! Zachary STOOD-ALL-BY-HIMSELF! He had is AFO's on and although it was only briefly he still did it! I'm so proud of him!

Ashlee has been sent home sick from a young carers camp - she was bound to get it, everyone else has. She did really enjoy her limited time there though.

Mitchell is home again from his Dad's....I missed him.....

Yesterday, we went to Thomas & Friends Live on Stage! and also The World Festival of Magic. Both were great, more on that later.....

Just a couple of things....

Firstly, on Monday we picked up our glasses....Anna and Me.

Is she just the cutest?! Excuse the messy hair but hey its the new black, right?

She loves them, most of the time and I have found they are very strong because she has already throw them on the floor a few times and bent the arm which thankfully just bent right back.

Yesterday we went and picked up these.....

Notice no pics of Zachary wearing them....that's because once we took them off yesterday afternoon he was not having a bar of them again. This morning I struggled for a while to get his foot in the right position to slip right back in the heel and when I did finally get them on him he refused to stand at all and just cried non-stop for over an hour! Tomorrow we head back to The Spastic Centre just to make sure that they are fitting properly. Knowing Zach it is just a refusal to wear them that we are going to have to work through.

Just pure stubbornness really! Oh and check out the just got up recently do!

We also need to go shoe shopping and pick him up a new pair of shoes that fit - they say go up a size with splints on right?

Just Mitchell, looks so sweet doesn't he?

Did I tell you that I have two sets of twins?!

Nah, just joking. Ashlee and her friend could almost pass for twins though don't ya think?

Lastly, I actually have some sewing in the works! Can you believe it? I had to borrow my SIL's machine as mine is packed away in storage. I'm making a hooded towel, a baby blanket, a bib and 2 burp cloths for a friends dear sweet little girl born on Monday. Welcome little Bridie! Everything is cut out and pinned up and tonight (once the kiddies are sleeping) I will just whip around them with the machine and package them up ready to send off. Photos I promise!

Currently Zach and Anna are sitting on the kitchen floor eating strawberries that Anna raided from the fridge, at least its healthy!

The Eye Clinic and Hearing Tests

Yesterday we headed to Sydney....again but this time it was for Anna. Ashlee commented on how weird it felt to be here and not have anyone look at Zachary!

The Eye Clinic at The Sydney Children's hospital is where we headed and the news was as expected.....surgery. Thankfully though he wants to hold off until she is a little older as it makes it much easier to do. In the mean time though, glasses. All day, every day until she gets the surgery. He did say though that wearing the glasses gives her a chance (although a VERY small one) that she will not require the surgery. Keeping my fingers crossed for that one!

It was a terribly long day and we didn't get home until after 10pm. Leaving Sydney during peak hour traffic....horrible! I'm glad I don't have to do that every day! The kids travelled exceptionally well though and were very good all day which is such a bonus. Anna didn't even freak out and break down in tears when they were examining her! Double bonus!

In other news Zachary and Anna had hearing tests last week. Mainly because they never did get hearing tests at the hospital and being prem they have a higher risk. It was a total shock.....Zachary failed, just. That wasn't so much a surprise but Anna, she failed with a capital F! I have never had any concerns with her hearing but we do have to go back next week and get retested. Lets hope it was just a bad day for her and she will do better next time. If not....well then I don't know......

Better head off, need to get this script down for her glasses. How much will that cost? Also need to get caught up on all this washing and be at the doctors by 1:30pm. Did I tell you that I have a Anterior subluxation of the 3rd and 4th distal vertebrae of the Coccyx (or something like that...hehe). Basically it means that my last and second last bone of the tailbone are dislocated and have been since I had the twins. There is really no treatment short of surgery to remove the coccyx....ahhhhh! I am seeing Zach's physio as she thinks that she may be able to get some pain relief but I'm waiting to see the Orthopedic Surgeon too. It never rains it pours!

Speaking of pouring, we got caught in a huge storm on our way home last night where we had to do about 10/kph because I couldn't see a thing and my passenger side wiper decided to stop working! Still need to look at that. As I said it never rains it pours!

Also Zach gets his AFO's on September 29th! Yippee!

Running now, have a great day!

What a day (3 months) I have had! (part 2)

I'm doing this in dot point because I'm lazy its easier!


* Today I had to take Ashlee to the OT. The finger she broke has been very sore so after a trip to the doctor, an x-ray then a trip back to the doctor we find it hasn't healed.....

(This is not her actual x-ray but it is very similar to her original x-ray weeks back)

The break is actually called an 'Avulsion fracture of the distal phalanx'. Basically her finger was bent back so far that the ligament pulled a chunk of bone off (a volar plate injury). The ligament is still not healed properly and the little piece of bone? Well it floating around in her hand somewhere I guess because it is not there anymore....hmmmm. So it is splinted again and we just wait. No sports, no movement. She even has to shower with it on. The splint is pretty purple to! LOL!

* Ashlee is going to Wollongong next week to compete in Athletics!

* Zachary has had his AFO's approved and we pick them up this month! Finally! We will also soon be receiving his Bath seat.

* Wednesday we went and tried out some wheelchairs! Well Zachary did. I forgot my camera, I really wish I had it. He did so well and has so much upper body strength that he mastered it in under 15 minutes. We tried out 3 different ones:

The Mini Ultra Lightweight

Great chair - fits Zach perfectly but it doesn't grow at all so we ruled this one out pretty much straight away. You have no idea until you see this chair in person how tiny it is!


The Avantgarde

This chair was the one that Zach did the best in. He mastered this one straight away and didn't want to get out! It has room to expand width wise and also can be custom made. The little wheels at the front also light up the faster you go. It comes with wheel guards in a choice of cute little designs too...lol


And lastly The Teeny Plus




After almost 2 hours this is the one we decided to go with. It grows in both width and depth and should do him to well over 6 or 7. (I did check with I can get light up wheels with this one, and yes I can....hehehe) This one will be custom made to suit Zachary. For example we will remove the wheel guards as they inhibit his ability to push himself but will add swivel arm rests so he can get in and out of the chair. Also getting handle extenders on this so he can be pushed if needed.

Now just to convince the rest of the gang that this is not a toy!

* Anna has her Eye Clinic appointment very soon. We will see what that will bring -I really have no idea.

* Mitchell is going great guns at preschool! He is also going with his Dad tomorrow. As much as he drove me up the wall today I'm not looking forward to it :( I'm going to miss him A LOT! He will be going for the weekend then back for Preschool on Monday then back to his Dad's for a few more days.

* Me, well I'm feeling totally drained and not quite understanding how I manage to function at the moment. I'm having a hard time getting any real sleep at all these last few weeks then I'm running all day the next day! Not to mention my doctor thinks I have broken my tailbone but that is another story! Just an excert from my week so far:

Monday: Mitchell was at preschool and Zach and Anna were in care for the morning. Leaving me some time to try and catch up on some washing, run some errands; housing, medicare, etc. In the afternoon we had physio for an hour then a doctors appointment.

Tuesday: We have early intervention on Tuesday. Over an hours drive there, 2 hours of group and over an hours drive back. Nothing else on these days because we really have no time.

Wednesday: Ashlee had a doctors appointment then off to spend two hours looking at wheelchairs.

Today: O/T appointment for Ashlee over the other side of town. Back to our side of town to get to the chemist and medicare as well as haircuts for the three little ones (pics to come - Mitch got spiderwebs! And it was Zach and Anna's first haircut!). Then off to two doctors appointments for the afternoon. Managed to run down and do a quick grocery shop before dinner too.

Tomorrow: X-ray of my tail bone in the morning. Need to get some paperwork witnessed and call about a dozen real estate agents. Then off to Cooma (about an hour and 20 minutes away) to drop Mitch with his Dad.

In between all this I some how find time to eat (well most of the time), shower and occasionally blog. I'm looking forward to Monday morning! Three little ones in care and the morning to myself (well no appointments yet!).

I think I have rambled enough. Time to hang these few things on the airer and go to bed and hopefully get some sleep!

Just a quick update

more to come tomorrow....

Today we saw Dr Lowe. Booked in for Botox for his Abductor muscles. December 14th at this stage but Dr L said that will change as he is opening up some more places - expect it in the next month to month and a half. Watching his calf muscles at the moment and reviewing them again in a few months times, he doesn't want to do them right now. He wants him in his AFO's for at least a month before the review. Other than that everything is great and he is very happy with Zachary's progress.

The trip to Sydney was long and tiring with lots of snow traffic! Plenty of phone calls today from O/T, DADHC case worker etc. The one day when I'm really busy! We are heading into DADHC on the 9th of September to road test some wheelchairs. Appointment with The Spastic Centre to do some 'before botox' measurements and also need to meet up with our Physio to do some measurements for his wheelchair. Busy, busy and just when I thought things were going to quite down again for a bit. On top of all that we have our regular physio, our early intervention, we need to visit the audiologist (for both Zach and Anna) and Anna has appointments too! The main one being the Eye Clinic at SCH in a couple of weeks. Argh, 'life with Special Needs' is becoming a real reality now - full steam ahead.

Other news, Ashlee got through another round with Athletics. She is now competing in Wollongong on September 17th! I'm so proud her! Between her skill with netball and her brilliant athletic ability she is going to go far! I have no doubt her future will definitely involve playing or teaching some kind of sport.

Spoke to Mitchell today. Missing him like crazy! He got a 4 wheeler motor bike from (D)ExP for his birthday and he has been spending every waking minute on it apparently! It scares me a little but (D)ExP is very responsible with safety so that puts me at ease a bit.

Oh, and one last thing......we need to get one of these....

$69 from here.....Dr L is a bit concerned about Zach falling a lot. 99% of the time its his head that takes the hit - onto tile! So mainly when we are at home he must wear a 'Head Bumpa'. Super fashionable! hehehe.....

OK, not such a quick update but photos tomorrow! Fires on the side of the highway and all!

The last few days

We had another visit with Emma and Damo for Physio. They are brilliant and Damo always has Zach in hysterics! Its so funny to watch. They make therapy so much fun for him so I'm trying to what they do at home as Zach hates doing his stretches and therapy for me. From what I hear that's not unusual though. Our main goals at the moment are to teach Zach to sit properly and to crawl properly. If he doesn't do those two things we don't hold out much hope for him ever walking. Our main therapies are stretching, ball play - where he lays over the ball, trying to get him to stand holding on to a hula-hoop (without me hanging onto him!) and we are using a 'wobble pillow' to try and get him to learn some balance (which he has none of, nil, zilch!)

Our days seem to be consumed with therapy or some kind of appointment at the moment but it hopefully will pay off in the future.

Today we were meant to be picking up Zach's AFO's but due to some funding stuff ups we now have to wait another month. Hopefully they will be ready by then. So instead of going to The Spastic Centre's Orthotics Clinic we went to Early Intervention instead. Last fortnight they had a professional photographer there and today I got to see some of the gorgeous photos he took. Next time we will pick up a disc with all the photos on it. I'll share some, they are so special.

On the way home (its an hour each way) the little ones slept leaving me with complete quite!

(And no I didn't notice until we got home that she had taken her arms out of the straps! Ahhhh)

(Zach snores too! Oh and excuse the McDonald's box - its a fortnight treat thing after EI)

Tomorrow Mitchell goes with (D)ExP until Sunday leaving me with only the twins and of course Ashlee - who is ever so helpful (no I'm not being sarcastic) - to take up to Sydney for the day to see Dr Lowe. Looking forward to seeing him and showing off the progress Zach has made since we last saw him 3 months ago! I was hoping he would have his AFO's but that's not to be.

I'm also looking into buying some new convertible booster seats for Zachary and Anna. I want the CarGo one that Big W had in their catalog but in usual Big W style they didn't get any in and are not planning to - WTF? Why have it in the catalog than!! I want that one because it is the narrowest on the market. Mitchell currently has the Maxi-Rider and although I could just buy two more of them they are not going to fit across the back seat of the car. My other option is to buy two of the Maxi-Rider AHR's and move Mitchell into one of these.....

Infa Vario Max Booster

I think that they will all fit, I'll just have to do a few measurements. The investment of over $1000 - worth it? The three other seats will be sold. Or I can get two of these....

Infa Comfy Cruiser

and not the Maxi-Riders. They are cheaper but would like to do a little research first. Anyone tried any of these?

Lastly, Ashlee sent home from school again today sick. We are heading to the doctors soon to have a good health check up and see if there is any underlying problems....

Alright, dinner time!! 'See you' all later!

A lot of nothing and some updates with pics!

I mentioned in a previous post that Zach fell in the bath, breaking his cute little front tooth in half...I still feel incredibly terrible about the whole thing but slightly better since we took a trip to the dentist yesterday and 'made it all better'. She checked that he hadn't pushed it in too and no thankfully he hadn't. After pulling up at the hospital - where the dentist is located - I decided to take some before shots before. You know remember the incident but its not like I'm going to forget really is it. I'm going to be looking at that darned half tooth for at least the next 3 - 4 years!

Not that you can't see it but here it is a little closer....

Really he and lucky he didn't knock it right out!

OK, that's done. I'll get an after shot soon. Nicely smoothed off, no more pain while breastfeeding! Yes, my dear sweet little boy still breastfeeds. Its not like I haven't tried to wean, Anna self weaned at 18 months. Zachary just will not give it up without a fight and right now I'm in no mood for fighting. I figure once a day (rarely twice) is OK right now, he always has a drink before bed at night. His 'booby time' as he calls it....lol.

Now onto more bad news. Zachary was supposed to be getting his AFO's this week. I was really looking forward to it, kind of. Yesterday I got a phone call from Stuart Kerr to tell me that PADP haven't sent him confirmation yet that our funding has been approved! Ahhhhh! So that means it is going to be at least another month before he will have them now. I'm calling them on Monday to inquire about it and also ask about our bath seat. I got a letter nearly 2 months ago letting me know that funding was approved and the chair would be out to us (or our O/T) shortly. It still hasn't arrived.....

Good news this time.....Zachary's speech has really taken off! I'm over the moon at how much he talks now and how much clearer he is! He now sings 'Twinkle Star', 'Old MacDonald' and 'The Tickle Song' along with some others and counts too (he gets to about 8)! We are also hearing some of the alphabet - up to about G. I'm stoked! Although Anna had no speech problems I'm also pretty impressed with her vocabulary and counting. My sweet little babies are growing up way to fast! Were did these little babies go?! (Time for a bit of reminiscing....)

I will one day, hopefully soon, do a little post about how Zach and Anna came into this world. About the 48 days we spent in NICU/SCN. The ups and the downs of their first few weeks of life. It still is hard for me write about this sometimes.

Ventilated for the first 24 hours....

Day 3 and Zach is trialed off CPAP for a few hours...

Unfortunately by that evening he was back on it.....Spending the next 5 days on CPAP before finally 'breathing easy'....

Miss Anna - day 2. Anna was never ventilated.....

Day 3....

Day 13 and I'm finally able to hold my two little bubs together....

Anna and a horrible picture of Mummy at nearly 4 weeks old....



And Zachary (with Mummy looking horrible again) at about the same time...



Oh I don't miss those days - life 24/7 in the NICU & SCN, but I miss
those days when there were so little if you know what I mean.....

* * * *

Mitchell is with Brett at the moment and will be back tomorrow. I've enjoyed the peace and quite but I miss my boy like crazy! He has started Preschool again and loves it.....

Lastly please excuse the quality of the photos and the randomness of this post in places....lol.

An afternoon at The Spastic Centre

Yesterday we had our first appointment at The Spastic Centre. It was actually for an appointment with Stuart Kerr to have casts made of Zach's legs. Zach was brilliant! Just sat on my lap, cuddled Elmo and watched. Probably thinking 'What the hell are you doing and when do these come off!'. We are having Bilateral Dynamic AFO's made and should have them in about 4 weeks.

Similar to the middle one in this picture

He is walking (and sometimes trying to run!) well with is walker but toes walks on his left foot and his right foot drags. The hinged AFO will still give him some movement but prevent the toe walking and foot dragging. I'm looking forward to getting them for him but at the same time I'm not. How will he feel about them? Is it going to be a daily struggle to get them on him or keep them on him? But I guess all we are doing is trying to help him and by all accounts at the moment he is doing really well. Apparently for a 2 year old to be walking in a walker is brilliant. I am very happy about that and it really gives me hope for the future - his future. Zach is a very determined little boy and if anybody is going to 'beat this' - he will.

We are looking into staying here in Canberra and using The Spastic Centre's services. I was planning on trying to get a house in Cooma to try and stay near Zach's current therapy but I don't think that is going to be possible. There are just no houses available at the moment. Houses in Canberra cost a small fortune but what other option do I have?!

Ashlee needs to go back to school. I still haven't organised anything. That is what today is all about. Wish me luck in finding a decent school for her. I'm actually looking at Trinity Christian School (where I went from K-7). She likes the idea - thankfully.

OK, that's it for now. House work this morning and maybe some washing if this rain lets up!