Wagging School

Every now and then something will happen that will remind you that life with a child like Noah isn't exactly normal. After 8 years, things like making up numerous medications every day, going to appointments, feeding with a tube and suctioning is the norm. Sometimes when I am out with Noah I forget that he is 'different' and wonder why everyone is looking at us as we are walking around the supermarket, and it hits me that they are looking at Noah.

Noah has been pretty sleepy the past few days (a little more than normal) and yesterday afternoon when he finally woke up he screamed for hours on end. Being unsettled is also quite normal for Noah but he just didn't seem right, so I pulled out the urine analysis sticks to see if I could find anything going on. A few years back I got sick of running to the Dr every time we thought he may have a urinary tract infection, so the Dr agreed it would be good to have some urine analysis sticks at home. That way I could confirm whether or not he had an infection before we sent off his urine to pathology, which saves everyone time and money.

Straight away the stick showed up that he had glucose in his urine - very strongly. Luckily nothing else was showing up so I didn't stress. If I find glucose and ketones at the same time the Drs want us to go straight up to hospital to get a blood sugar level done, just to see what is going on. As the night when on I kept checking and it was still up, and I was sure it would've been back to normal this morning and it would be a normal day - Noah would go to school, I would go to the gym with Harri and Kobe and we would get our usual Monday housework done.

Instead Noah had other plans - his urine still had glucose in it this morning, which I knew meant we either had to get him to the GP or up to hospital to get checked out. This is about the 5th time it has happened and every time they aren't really sure why it's happening. Instead they have put it down to a 'Noah thing' and that he probably isn't metabolising his meds at the time very well, rather than being diabetes.

Jalen and Aaron went off to school and I decided to hang out till 9am when the GP opened to talk to him about what to do, as I really didn't feel like heading up to hospital unless we really needed to. In the meantime I packed the nappy bag for a day in hospital just in case - snacks and toys for the boys, feeds and meds for Noah and colouring in pictures for Harri.

Our GP is lovely and a great Dr. He was with us the day that Noah was diagnosed with hydranencephaly, so we have a history with him and was so happy when we found out he was now a GP and switched over to him as soon as we found out. He spoke to me on the phone and said to come down and he would get his nurse to check Noah's blood sugar levels. Luckily they were fine and we avoided a trip to hospital, which I knew would end up being at least 3 days if not more. He said that it looked like he was having the same thing happen again, and to just monitor his urine over the next few days.

So instead of being at school - Noah is wagging and having a lovely time lying in the sun. Notice Kobe has also flaked it in the sun as well! It's so nice to see the sun out again today and whenever the sun is out we try to get Noah into it for at least 20 mins to get his dose of Vitamin D for the day.

It's nice to have a lazy day at home every now and then.

I'm just glad that it's a lazy day at home, and not in the hospital.

I told Noah he couldn't laze around all day, and put him into his 'little room' for a while. Hopefully tomorrow everything will be back to 'normal' - as normal as it can be with a child like Noah.

Noah's Pool Party

With the new Launceston Aquatic opening it is the perfect place to go rain, hail or shine. Kobe's party that was planned for the Bike Centre was a wash out, so we didn't want to risk it again with Noah's birthday. Instead we decided that it would be fun to have a family party and all go swimming at Launceston Aquatic together.

We planned it for the afternoon as Noah has a habit of sleeping until after lunch and being awake until very late and we wanted him to be awake so he could enjoy it. Aaron spent the morning making his cake while listening to Michael Jackson CDs. Aaron was a huge Michael Jackson fan in the 80s so was inspired to listen to him all morning. The boys cracked us up as they both came out with their MJ hats on and did a few dance moves for us!

In the afternoon we met everyone at the pool. It was fun seeing how excited the kids were and how much fun they were having. Supposedly Chloe was so excited all week and kept saying she needed to get her swimmers out. This morning she asked if it was time for Noah's party and Steph told her it was in the afternoon - after Kobe had a sleep. She then kept asking 'has Kobe had his sleep yet!?'.






As usual Kobe wasn't too sure at first. The noise of the bucket freaks him out for a bit and he started shivering after about 5 minutes in the pool! We kept going from the hydrotherapy pool to the kids pools to warm him up.

Mum ran around with the kids and had a great time. It was nice having Mum and Dad there as they are always such a great help with the kids, and the kids love having them there to play with too, although Dad (and Jared!) were party poopers and were happy to sit and watch.

Noah swam for about 45 minutes which was great as he was really awake and happy in the water. It's amazing how loose his body becomes as he is swished around in the warm water.


We then got him dressed and he sat with Dad and watched what was going on for the rest of the time.

It was a really fun afternoon and a nice way to celebrate Noah's birthday - especially as he got to enjoy it as well. Afterwards we came home to our house for party food and cake. As usual Aaron did a great job on the cake.

Dad's birthday is also the same day as Noah's. I feel bad for him as he seems to get a bit forgotten as Noah steals the limelight away! We hope you had a good birthday too, Dad. Tomorrow is Chrish's birthday, and all the June birthdays will be over. We hope you have a great birthday Chrish! Wish we were with you to help you celebrate.

Noah's 8th Birthday

Noah's birthday started off just like any other day - dragging him out of bed asleep, so I could dress him, get him toileted, give him his neb, puffer, feed and meds before the bus arrived. About half an hour before the bus was due to come I got a phone call from school to say that all of the aides who usually work in his classroom and also his teacher were off sick today, which meant that only the Teacher in Charge was confident with him and his needs (suctioning etc). She said she was still happy to have him there as long as I was, but I didn't really feel confident to send him to school all day, when I knew that no one would really know him like the regular aides do.

Instead I decided that it would be nice to spend the day together since it was his birthday, and he came out to Deloraine with me instead. Simone told me that they were having a photography class by one of the members who used to be a professional photographer for a mainland newspaper. It sounded like fun, so I invited myself out :) Harri and Kobe were happy to play with the kids while Suzanne looked after them (thanks so much Suzanne!). Noah decided to sleep the morning away as usual.

He not only slept all morning, but also slept all afternoon! Harri was most upset with him as he wanted to open up his presents with him, but had to wait for him to wake up. I did let him open up a special card that came in the mail for him from Kylie and Shayne. It was a beautiful Noah's Ark card. Harri kept showing it to Noah, but I think he was more interested in sleeping!

When we went to pick up Jalen from school, he came out carrying a bunch of balloons and a bag with a cushion and big card in it from Noah's class. Noah usually is at Punchbowl today, but Di has been off all week as one of her kids is sick, so instead he has been going to Newstead Heights. Unfortunately no one told his teacher and class he wasn't going to be there today, so they were all excited to have a little party for him! They had blown up a heap of balloons and were going to tie some on his wheelchair. One of the boys went home last night and was very excited and told his Mum it was Noah's birthday, so she quickly made him a little cushion! All the kids had signed the card and the teacher said they were so disappointed when they found out Noah wasn't going to be there. It really touched me that they went to so much trouble for him.

He finally woke up at about 4pm - just in time for a visit from Nanna and Pa (Aaron's Dad and Step-Mum). We then headed off to watch Jalen play basketball. It was nice to have Noah with us as he doesn't usually come to basketball as we usually have Di at home with him. We gave her the night off so we could spend the night together as a family. Noah was really bright and alert the whole time.

It's nice going to basketball as we always get to see the Woodwards, Wheelers and the Prebbles as their girls also play around the same time as Jay's games.

Emily is an awesome babysitter and helps out with Kobe. She loves playing with him and we love it too as it means we don't have to be the ones to chase him around! :) Thanks Em!

Jay played a really good game and was happy that they won.

He is becoming friendly with a boy on his team - Ryan. He also has Rohan on his team which is also nice.

We finally got to open up presents with him at 7pm! This photo cracks me up as both the boys have their 'concentration' tongues sticking out as they are helping Noah open the presents!

It was a really nice day in the end, despite him sleeping for most of it and also hearing the sad news about Michael Jackson passing away. Jay and Harri absolutely LOVE him and were so shocked and sad to hear the news this morning. There were even a few tears from Harri. All day he kept asking 'is Michael Jackson going to be dead all day?'. I told him he was and then half an hour later 'is Michael Jackson still with Heavenly Father?'. I told him he was and then he got very upset and said 'now we can't sing his songs anymore, because he's dead!!'. I told him we can still listen to his songs and watch his DVDs and still sing the songs and then he said 'but Michael Jackson can't move or sing anymore 'cause his heart stopped working'. Poor Harri.

The boys are excited for tomorrow as we will be having a little family party with Grandma and Grandpa, all the Aunties and Uncles and cousins.

8 years ago tomorrow...

our lives changed dramatically. It's hard to believe that Noah has been with us for 8 years! When he was diagnosed with hydranencephaly we were told he probably wouldn't live more than 2 to 4 years. I was asked today if it's hard to believe that he has been with us for 8 years. I said it isn't as it has been a long and hard 8 years, and sometimes it feels longer than 8 years, but it has also been a wonderful 8 years.

Life definitely isn't what we had planned or hoped, but we can also see how lucky we are to have such an amazing little man in our family. Whenever Noah has another birthday I have mixed feelings - happy that he is able to celebrate another one, but also sad because I don't know how many more we will have with him. I look back at photos and can't believe how much we have been through with him, and how much he has changed over the years. I wanted to put together a clip to remember the past 8 years with him.

We love you Noah and are so glad you came to our family, and we are especially glad that we get to celebrate another birthday with you!

Swinging at St Giles

Noah has had the same OT (Occupational Therapist) since he was a baby. Now that he is at Newstead Heights School the majority of the time he is also seen by the school OT. It's great having St Giles so close to school as it means he can see an OT or physio anytime one is needed. It also means his wheelchair is looked at straight away if there is a problem. as the seating clinic technician comes straight over. We recently met the new OT and she is really lovely. She set up some appointments for Noah to do some sessions with her during the school holidays, but unfortunately school holidays threw me right out of routine, and I totally forgot I had made the appointments (even though they were written on my calendar!).

Today we finally caught up at St Giles to talk about some more things they can do at school to stimulate Noah. Harri was so excited when he knew where we were going and said 'we haven't been there for ages, have we Mum!'. Before Noah started school we used to go once a fortnight and Harri loved coming as it meant he could play in the big gym. Kobe was so excited when we got inside and he saw all the cool toys.


The OT and I talked a lot about the 'cause and affect' type activities Noah used to do a lot when he was at Early Learning, and how well he responded to it when it was something that happened regularly. She said that movement and touch are one of the things that babies and kids like Noah respond to really well, so swinging was something she wanted to try with him to see how he responded.

Harri was like the paparazzi on the side snapping photos of us!

We would give him 4-6 swings and then she wanted us to stop so I could let him know I was still there with him and see how he was coping with it all I could see he actually really liked it.

She wanted to know how I could tell he liked it and I explained how his face and eyes were really relaxed and his eyes were bright and alert. It's funny how you take knowing his responses for granted as people who don't really know him wouldn't have had a clue if he was enjoying it or not.

We then did some sliding with him into a big crash mat at the end.

She also did lots of whizzing him around on the mats which he also seemed to enjoy.

Harri and Kobe were so good playing quietly while it all went on, so the OT then did a few things with Harri. I thought it was so nice of her as often the boys have to be patient and wait while I deal with teachers, Drs and therapists and don't get to join in on the fun with Noah.

It was great to have such a keen OT and it will be good to have some things happening regularly at school for him.

My Mini Masterchef

Kobe has a thing about having to sit up on the bench when I am cooking. He can't just sit in his high chair and watch, but has to be right up on the bench so he can see everything.

At first I did it to keep him quiet while I was cooking tea. It was either that he sat up there or he was pulling at my legs grizzling the whole time, so I decided that having him on the bench was a better option. I didn't like it at first as I was scared he was going to fall off, but I love it now as he keeps me company while I am cooking, and is really good at just sitting in the one spot so I don't have to worry about him too much.

Tonight I was making tacos and he loved having some grated cheese in a bowl. He was a typical boy and would tip it up, trying to get as much out as he could.

It's nice to have my mini masterchef in the kitchen with me every night. It makes the very boring job of cooking tea every night a lot more fun!

Masterchef

We are hooked on the show Masterchef Australia. We all hang out to watch it every night, although Harri usually starts crying just after it starts, as it means it is his bedtime! Every night he asks if he can listen to the 'Masterchef song' as he loves the song at the beginning and then it's bedtime for him.

Harri has a big box of 'cooking toys' which he loves. He loves getting out the toys and pretending he is cooking. Whenever Alison is here working with Noah, the boys love it as she is their judge as they compete against each other and she gives them scores. She is very diplomatic and knows to give them very similar scores or there will be tears from one or the other! :) Lately during tea the boys will critique me on the meal I have cooked. They will even give me a score for presentation and taste!

Last night was their turn as they made their own pizza for tea. They were very excited and Harri kept saying 'my presentation tastes delicious!'. Jalen kept trying to teach Harri was 'presentation' meant, but Harri didn't care - he still thought his was the best! :)

I was also very diplomatic and gave them the same score to save the tears, but really Jay did score a bit higher for putting olives on his :)

Thank You Fiona!

Fiona recently finished editing our photos that she took a few weeks ago. It has been so exciting checking out her blog every day to see the next beautiful photo she puts up. I found myself checking it numerous times a day, and oohing and aahing over them. Sometimes though I was very scared as I was dreading a photo of me coming up, as I HATE photos of myself!

I actually love all the photos that she took, and it has been hard to go through them and to pick out a few favourites, as I could pretty much put all of them up. To see more photos from her check out her blog. I love her work and could look at her photos all day.

I love the clarity and colours and the way she just captured different moments. Sometimes I didn't even know that she was even taking photos, which is probably why she got so many nice photos as we were all just being ourselves. I really love this shot of all of us.

Maddi was such a great model for Fiona. Fiona asked her to carry the teddy for her and she did everything she asked so perfectly! I really LOVE the photos of Maddi - they are beautiful.


This photo captured Harri's and Jalen's personalities so perfectly! Jalen always wants to do the right thing - hence why he is looking at the camera and smiling despite what is going on around him! When I pull out the camera he always just stops what he is doing and poses for me! I always have to tell him to stop looking at the camera and to just do what he was doing as I don't like posed photos all the time. Harri on the other hand is the crazy, loud, centre of attention and this photo is so him!

It was a freezing cold day (and we were in Deloraine which meant the temperature was at least 3 degrees colder than Launceston! ;) and Kobe was miserable for most of the time as he was cold and tired and couldn't get down and crawl around like he wanted to. Just before we were about to leave Fiona said she didn't have many photos of him and quickly took one while he was with Aaron. It's actually one of my favourites from the whole day.

Kelsea is such a 'Daddy's girl' and Jared treats her like a princess, so this photo is really lovely as it shows how special they are to each other.

I also love this one of Eamon - the youngest of the whole family (for now!). I love how Becky's face is blurred out in the background.

Lachie was also freezing by the end of it. He is such a placid little man, and this shows his personality so well too - just happy to sit and smile and watch while we played in the leaves!

I actually didn't even see when Fiona took this photo, but when she uploaded it a few days ago I thought about how special it was. Chloe loves all of her cousins and is always so lovely to them.

"Little" Alex is also very placid and happy doing his own thing. I love this one of him in the leaves, and how there are still leaves flying through the air from some of us trying to get each other!

Mum is always so self conscious (hmmm - I wonder where I get that from then!!!?) and hates photos of herself but I think she would be really happy with the ones Fiona took. I love this one of her - she looks really pretty in it.

The reason we arranged to get some photos done was because Chrish was down for a month while he recovered from his operation. We miss him now he is back home in Sydney, but it was so great having him home while he was recovering. I love seeing him look a lot better than he has in a long time.

I also love this pic of Alex and Nicki together. I think Nicki looks really pretty and happy in it.

At the end of the session we let the kids finally have the lolly pops that Mum had bought them. We thought they would look great in the photo and didn't want them to get too dirty and sticky early on. After the second attempt at getting balloons for the kids (the first lot flew away!), I thought it was worth all the effort, as I love this photo of most of the cousins together (minus the youngest ones). I really love the colours.

Noah wasn't having a very happy day and I was worried we wouldn't get any nice photos of him. I was so happy (and a bit emotional!) when I saw this beautiful photo that Fiona got of him. I have to say this is my absolute favourite. I just think it really shows his innocence and how special he really is.

Thank you so much Fiona for the beautiful photos you took. They are very special and we had lots of fun having them done (despite the cold and uncooperative kids!). You were so patient and easy going. Now I just have the big decision about which one to put in frames or on canvas - there are too many beautiful ones to choose from!