December 14th 2009

(FIRSTLY - is anyone else having trouble with Blogger? My post is all stuffed up and it's done

all its own editing - fonts and font size etc!)

This was the day Zachary we went in for his first dose of Botox. We headed up to Sydney the afternoon before and spent the night at Ronald McDonald House Randwick. Met some lovely people and heard some amazing and some sad stories. I tell you staying there really makes appreciate each day more, your children and what you have - or don't have as the case may be.

8am and Zach was admitted. Being one of the youngest he was 2nd on the list. Zach freaked out as we wheeled him in (Anna had to be held back kicking and screaming by Nanny - poor baby girl). His cries got slower and slower as he drifted off to sleep. 40 minutes later he was back and he was upset but he soon settled down and then drank a whole cup of juice and 2 sandwiches. An hour later all seemed well and we were sent home. We had decided to spend the night at RMHagain and I'm just so glad that we did. Within 30 minutes of being back there Zach was getting very lethargic and also feeling very warm. We ended up taking his temperature it found it to be 38c. I called the ward and was advised to take him back to Children's Emergency, which we did. A small walk up to the hospital only to find his temperature was now 39.9c! It took 4 hours but we managed to get it down to 37.5c and another hour later it was still the same so we were sent on our way. By morning he was still a little warm but ok. It was scary to say the least but I was glad to be heading home.

That's when Dr Google came into play. After researching his symptoms I came up withMalignant Hyperthermia and guess what, its in our family. My Uncle (my Mum's

brother) flat lined on the table during an operation. So it is advised that we treat him like

he has it until we get some DNA testing done. More things he doesn't need.

So that was our first experience with Botox. Even though it wasn't the Botox that cause

the problem. We head back to Sydney on the 14th for a follow up visit and some

casting - I don't know how he will take that. Other than that Zachary is doing well.

He is talking incredibly well now and is such a funny little boy. TheraTogs are working

wonders and most days he actually asks to wear them and his AFO's! I guess he can see

the benefits.

In other news.....

Zachary and Anna got toddler beds for Christmas. My brother put them together for me

recently they have just been sitting in my room because their new mattresses hadn't

arrived. Today they did! I quickly got rid of the cots and put their beds in their room.

They were so excited! I also got them new quilts and junior pillows. Today's task - finish

their quilt covers and pillowcases. That I achieved!

One new Thomas Pillowcase - fabric was an ebay purchase

One new Thomas bed and Thomas quilt cover! (Panel from Spotlight and backing is a queen

sized white sheet that I got for $7 and did both covers and pillowcase!)

One new Dora pillowcase - another ebay purchase

Lastly is the new Dora bed (minus the stickers. I'll bed putting them on when no one is

watching!) and Dora quilt cover. Again the panel is from Spotlight.

My photo for today is coming - I don't think these count. Lol!

Diane...

Still working on that post and I guess I have even more to add to it now with Christmas and all...but I just wanted to put a message out to Diane who left me a comment.

I am not able to contact you as there is no contact info on your profile but if you email me at nesearle (at) tpg (dot) com (au) I would be happy to give you more info.

Happy New Year everyone! (Just in case I don't get back here before then lol!)

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')

Just a quickie...

because I'm stuffed and because I haven't been around for a while.

Returned from the hospital tonight, Ashlee split her lip WIDE open. 5 stitches on the inside and 2 on the outside. It really didn't look that bad if it wasn't for the swelling but once we got to hospital and they looked on the inside of her lip I was shocked! A huge gash about 7-8cm long and about 1cm deep! My poor little girl was (and still is!) in so much pain! It brought me to tears watching her get stitched up while she squeezed my hand for dear life. This was even after a cannula, some heavy drugs and a lot of anesthetic. Thankfully the cut to the outside of her lip is only about 1cm long and is right in the middle, cosmetically the doctor thinks it will be fine. She was sent home on panadine forte and also told nothing but liquids for a week. That didn't go down to well as she was already starving by the time we left the hospital. Please keep her in your thoughts and prayers as she heals. No school for her tomorrow.

As for Zachary, we had him at the hospital recently after he took a header head first off a retainer wall on to concrete. Thankfully he is OK but with some bruising and cuts.

Today we started his trial with the new (well about 10 years old but relatively new to Australia) Theratogs! (Also some more info here) Firstly I will say after just one day I am VERY impressed and would highly recommend them! Zach has Diplegia so is mainly effected from his waist down with some involvement of the right arm but he is definitely more effected in the right leg than the left. He toe walks, drags and turns in his right leg a lot more than his left. These theratogs had him walking in his frame quite straight minutes after having it on.

I'll go into everything more next and I have photos of him in it too. Going to check on Ashlee and head to bed for now......

It feels like Christmas!!

After having such a horrible time over the last few weeks I think our luck has finally turned! I pick up the keys on our new house (rented.....) tomorrow! We are moving in over the weekend! I'm like a little girl on Christmas morning....really!

I-CAN'T-WAIT......

...to have my own space
...to have more space
...to have my children in there own rooms again
...to play in the back yard on a warm sunny day
...to sleeping in my own bed - by myself
...to see Ashlee so happy to have her things ago

I could go on......

I will miss......

...having Mum to help out
...having an adult to talk to at night in peace and quiet
...our little pussy cat - he can't come but will live with Mum until he can join us again

Ahhhh! I'm so excited! And it is a beautiful house too....

Update on us:

Anna - still not 100%. She bearly eats and has lost so much weight. Still having some diarrhea and sleeping A LOT. She is grumpy, moody and easily upset. Not her normal self. She waking up at night again and usually heading back to bed with me. We are pretty much home bound as she doesn't want to go anywhere and would rather lay on the couch all day. Please keep her in your prayers.

Zach - he is going well now. Physio today that went great. New sitting wedge to challenge his balance. AFO's are great and helping him heaps, he even has got to point where it is normal and he doesn't complain at all.

Mitchell - he did get sick but thankfully picked up after a day or so. He spent the weekend with his Dad and had a ball - you know quad bike and all.

Ashlee - she was also sick, very sick. She is such a trooper though and held out until I was home from the hospital to help Nan out. Back at school today after the holidays, I think it is a welcomed break for her. Hoping to get her splint off this week, we have an O/T appointment Friday.

Me - I'm now having physio for my coccyx, second one was today and it seems to be doing good. I'm happy I can now sit for more than 2 seconds and not be in agony! I'm tired and still not 100% (I've been fighting a head cold for nearly 3 weeks now!) but feeling a little better. I was lucky enough not to get the virus though - looks like the OCD hand washing and antibacterial hand rub paid off, even if I do need to use a whole tub of moisturiser to get them back to normal. Packing things up and getting ready to move now.

Mum is also well again. I went over the house over the weekend with Glen 20 and disinfectant. Light switches, door handles, surfaces. Even pulled the reverse cycle apart and cleaned it all thoroughly too. Toy boxes where emptied out and every Dora, Thomas, track and Lego piece was cleaned. Sheets and towels were washed with an added extra too - Canesten Antibacterial Laundry Rinse. No bugs here!

Better run, after two appointments already today I have one more to go......

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.

Busy busy

I've been playing around with my blog this morning.....when I shouldn't have been! Do you like it?! Now I'm going to head off and get some house work done, fold those clothes that are sitting there calling me. Get the dishes washed (man - why can't Mum have a dish washer?! Oh right she does but I guess {she} is out of order at the moment! Hmmmm.....) I need to get some more washing done and do a general tidy up than its off to Housing for an interview. Thankfully we have no appointments today.

Had a really hard night last night. Zachary woke at nearly 1am wanting to feed - I'm desperately trying to wean him but with little success. After giving him a small feed I cut him off which turned in an all out screaming match. After a little while he had woken up Anna too and then I had all three little ones in my, settling down (and giving up I guess) at around 3am! Mummy - 1, Zachary - 0. I'm extremely tired today and just want to sit around but life moves on and I better keep up with it.

Also did I mention that Zachary fell in the bath last night and broke half of his front tooth off! So today I'm also calling a dentist to see if we can maybe get his tooth smoothed out. Its really sharp! I feel terrible for my poor little man and quite guilty but I guess these things happen. Hopefully his new bath seat will turn up soon and I'll be able strap him down. As much as he loves swimming around in the bath he also loves to stand up at the side and walk around, he just isn't stable enough for that. Oh the joys......

This is the bath seat we are waiting on

Next up is a wheelchair......bath chair, wheelchair, AFO's, Walker.....is it ever going to end?!