Noah's First Holiday Part One

I am currently writing my latest post all the way on the other side of Australia, in Melbourne. We decided to bring Noah over to meet the rest of his family and friends. He has been lapping up all of the attention. I imagine it must be daunting enough to travel with such a young baby, but in my case I was petrified! I had myself fully convinced that everything was going to go wrong. As Noah doesn't swallow I thought the pressure would make him scream and worse case scenario he would rupture his ear drum. I thought he would have seizures. I thought that Qantas would think he was too "sick" to fly. I worked myself up to imagine the plane trip from hell ending in the plane having to make an emergency landing!

Well I should have just listened to my cool as a cucumber husband because Noah was amazing. He slept on take off and landing, didn't really cry at all and Qantas were awesome. They loved Noah and helped us with all his medical supplies and let us board first. Phew now I can breath a sigh of relief and enjoy our holiday :)

There were many people anxiously waiting to meet our little man in Melbourne. Aaron's Nanna, who is unable to fly, was first on the list to meet her first born Grandchild.

Noah was very popular at Nanna's nursing home. Everyone wanted to meet the little boy that they had heard so much about. There was a crowd of oldies and nurses trying to jockey for position with their wheelchairs and walking frames.

Next up it was Aunty Carlee's turn. She finally got to have a big cuddle.

Nanna Pam got to catch up with Noah. He has changed so much since she saw him in the NICU at just 6 weeks old.







Noah also got to meet a few other family members for the first time including Uncle Steve, Uncle Adam and Aunty Tanya. Noah loves meeting new people so I am guessing he is glad to be part of such a big family :)

Little Charlotte finally got to meet Baby No-ha as she calls him. So cute.

So many awesome new people to meet including the very cool Brendon. Love the glasses guys.

Happy Fathers Day

Things like Fathers Day, Mothers Day and the like can be a bit bitter-sweet. Its so hard not to think about what should have or could have been. I am sure that the "firsts" are the hardest and it will get easier in time.

I decided to surprise Aaron with a DVD I made of pictures of him and Noah. I used the words off of his Fathers Day card. Its times like these I realise how lucky I am to have such an amazing man as my husband and the father of our child. Happy Fathers Day Aaron, you're the best xx

Here is a smaller version of the DVD I made for the Best Dad in the World!

Make a digital slideshow

The Kindness Of People

I wanted to share with everyone the kindness of people and the support we have experienced. As you may have read on our blog our amazing family has supported us from day 1! They have visited at different times and helped out with caring for Noah. Our family and friends are always there to help and listen when we just need to vent :)

Our situation has not only hit us emotionally but financially also. When Noah was born we were in the hospital everyday for 6 weeks. He has been back to hospital a few times since as well. Looking after Noah is very exhausting to say the least and then there's all the hospital trips and appointments for his therapy, that until this point we have had to travel into the city to attend. And then there is all the extra costs associated with his care.

 

We are lucky that Aaron has his own business and so can have time off when needed. But having a lot of time off certainly takes its toll. That's when Aaron's sister Narelle came up with the idea "Climbing Kinabalu for Noah". Narelle, Travis and Carlee are due to make the climb July 11th. They are spreading the word and gathering support. All our family and friends  have gotten involved....... I hear there are cards and wishes coming from people we don't even know. I am so astounded by the generosity of people. I look forward to sharing with everyone how it all goes and thanking everyone who has supported us.  

Trav, Carlee & Narelle at Mt Kosciuszko (Training for Kinabalu)

 Thank you guys so much, it was your idea and thoughtfulness that has blossomed into a massive amount of support and wishes for Noah.

Then a few weeks ago we got a message from a lady called Bree. Aaron used to go to school with her many moons ago. She heard about Noah and saw his blog and wanted to help. She set up an auction on Facebook. She is such an angel and worked really hard spreading the cause and keeping the auction page updated. This has been such a positive experience and we have received so many messages of support and offers of help. We just want to thank everyone from the bottom of our hearts. It means so much to us that people would reach out and help us in a time of need. Help with offering auction items, bidding on items, spreading the word and sharing words of compassion. We will never forget the love we felt from everyone.



Bree and Her Beautiful Family


It was so fun to see the "bidding wars" going on and the high spirited banter between bidders. There were such amazing items donated. Including this picture donated by South Brisbane Storm Chases. It was taken the same day Noah was born, which I thought was such a heartfelt inclusion.

I would also like to thank the following businesses/people for their wonderful donations to our auction:

Little Loves Hand Stamped Jewellery & Baby Gifts
Grace's Corner
Cards and Stuff
Sweetly Scented - Soy Candles & Melts Handmade By Sarah
Sonix Family Entertainment
Sandilira - Holiday Shack Rental
Lizzy's Letters
South Brisbane Storm Chasers
Original Mischief
Siobhan Johns Photography
$1.00 Donation On Every Item Sold - Every Little Bit Counts
Bubbanooshka
STUNT Girls
MCC Photography
Kakara Soy Candles
Moments To Share
Jason Ayres
Kids Cove
Christina's Bridal Elegance
Tezzas Tagger Scraps
Your Child!! The Movie Star
Belinda's Place - Bargains For Everyone
Tezabears Bedroom Buddys and Window Clings
Brightstar Kids Agent - Emma Joseph
Blaise - Poetic Baby
Fiona & Tania Vanstone
Tupperware Consultant
RJ Couture
Carol Watkins

And of course a big, fat, huge, massive, enormous, gigantic thank you to everyone who bid, donated, liked and spread the word about Noah's Ark.


People are like stars... we all have our own special light that shines from within. Sometimes we find our light to be dim and we struggle to shine... but that is when we need the light shed from the other stars to help us light our path once again..... Thank You to all the Stars out there xx



Welcome To Holland

Since Noah was born I have been looking into different things to do with HIE (Hypoxic Ischemic Encephalopathy) which is what Noah suffered at birth.

I stumbled across a group of people on Facebook whose babies had suffered the same thing. All in different degrees. Some were only mildly affected and have gone on to have small if any long term disabilities, some, like Noah, are very severely affected. And there are many in between. Although we all have different individual stories and babies some of our questions and emotions are very much alike. It definitely helps to know you are not alone and there are people who can truly understand what you’re going through.

Some of the people I have met have blogs like the one I made for Noah. I was reading one ladies blog and she posted a story she had come across. It really hits home with me and I wanted to share it with you.

"Welcome to "Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

”I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas.You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland"
you say. "What do you mean Holland I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

After reading this I realized that I don’t want to keep going over the why’s and what if’s. I don’t want to be stuck in the past and focused on all the negatives. Noah may not be here for a long time but I am going to do my best to find happiness in the time we do have. Yes I really wanted to go to Italy (and maybe one day I will get there) but I ended up here in Holland and I am going to do my best to find tulips -xx

Has It Been 6 Months?

Noah has hit the 6 month mark and his latest stats are:

Weight:  7.310 kgs
(14.2  Percentile)                                

(89.6 Percentile at Birth)

Length:  67.8 cm

(43.2  Percentile)
(92.5 Percentile at Birth)

 Noah is currently not doing so well. He is having severe muscle stiffness and his seizures are starting to come back a little. He is back to being constantly upset when he is awake. It breaks my heart. Aaron and I are exhausted but we are trying to keep each other sane.

We are back and forth to the hospital in Perth (PMH) quite a bit. Noah now has a Neurologist, Occupational Therapist, Physiotherapist, Dietitian, Speech Therapist (Who helps with feeding), Ear, Nose and Throat Specialist, Pediatrician, and I'm sure I’ve missed some! He will also in the near future see the Ophthamologist and a Gastrostomy Specialist. Then there is our Palliative Care Nurse who is our overall coordinator. Plus we have to go to the Pharmacy to collect medicine and also deal with hospital supplies for Noah's feeding equipment.

This month Nana Dot came back for a visit. I was able to fly to Melbourne for a quick visit to see my family. My younger brother is in hospital, but it looks like he will make a full recovery :)

Also Aunty Nuz dropped in for a quick visit. She brought Noah a cute kangaroo jumper with a little Joey it.

Noah's Nursery

Before Noah was born I picked out the nursery set I liked. Of course the one I liked was a new design and there was a delay in it being available :) I was finally able to get it last week and I wanted to share it with everyone because I think it is so cute.

Noah Smiles

Every now and then Noah has a tiny little smile and very rarely something that sounds like a giggle. Here was the first time he smiled for a few minutes in a row. Luckily I just happened to have my iphone handy.

Climbing Mt Kinabalu For Noah

I am constantly reminded and touched that I am part of such an amazing family. In July Narelle, Trav and Carlee are heading over to Borneo to climb Mt Kinabalu. And they decided to do it for Noah, to help raise money for his care. I can't even say in words how much this means to us. Thank You guys so very, very much. I hope you have an amazing adventure!

Or see Narelle, Carlee or Travis to donate

Donations can be made to: CUA Bank Account Name: Special Purpose

BSB: 814282 Account No: 31135952

Where Things Are At - May 2011

Currently Noah is approaching the 6 month mark and the doctors are actually surprised that he has made it this far. He hasn't developed any absent reflexes like his sucking or swallowing. This causes his breathing to be very strained and he coughs, is congested and stops breathing sometimes. He doesn't track with his eyes at this point, can't see or doesn't register what he sees. We are waiting on further hearing tests but we think he can hear but he doesn't respond to sounds too often. He has very high tone in his arms and legs and is very floppy in his trunk. He used to be able to hold his head up when on his tummy but he can't do that now. His vomiting is under control, so that's one less thing annoying him. He has become very irritable and  is upset and/or cries 70% of the time he is awake. In all honesty he is not happy and it breaks my heart to have to see him go through this everyday. But we do have hope....hope that Noah wont have to endure his suffering for too long. It is a terrible thing to have to hope for, but we love our baby boy so much and just want what's best for him. We want him to be free.

Of course we will continue to take each day as it comes and try to hold our heads up. Very, very rarely Noah will make a little smile or laughing noise (usually when he is asleep or just waking) We just have to make the most of the time we have. Aaron and I were already pretty strong, positive type people but we have really had to dig deep and just keep on digging :) We really couldn't have stayed so "sane" without the help of our family and friends. We love and thank each and everyone of you xoxo

Noah Goes To Hospital

When Noah was 5 months old he started developing strange sort of quick jerking movements. He would put his arms out then move them really fast into the middle, turn his head to the side, arch his back a bit and stare. He would only do this for a few seconds. It was quite scary and over the next few days started getting worse. At first we thought it was just spasms but we soon realised that something was different. We took him into the hospital and he had an EEG done. It showed that he was in fact having seizures. By this time he was doing it quite a lot. It was worse when he was tired or trying to fall asleep. Even if he was asleep sometimes he would jolt and wake himself up. The neurologist told us that it looked like he was having Infantile Spasms. He was put on Sabril, an anti-epileptic that is specifically used for IS. It seemed to help and after a few days he came home again.

Then after a few days at home they started to come back. One day he didn't really sleep all day and night. He would keep having these seizures and couldn't sleep because of it. Of course it happened to be the long weekend over Easter so the usual doctors were away. It got to 11pm and we decided to take Noah back to the hospital. He was admitted and given something to help him sleep. He had another EEG and it was discovered that he was actually having Mycolonic Seizures, of which Sabril can actually make worse! So he was put on a different anti-epileptic called Epilim. This really upset his stomach and he started vomiting and having other complications. Noah was in hospital for another week and this settled down and now 2 weeks later he isn't having any seizures that we can tell.

Help Has Arrived!

Noah was about 4 months old when Nana Dot, Aunty Di and Aunty Grainne come to stay for a month. It was a blessing! At first I didn't know that Di's daughter Grainee was coming too. I didn't really know her very well and I wondered how she would be with Noah and me being the neat-freak stress-head that I am was worried about having too many people here. But I must say she is a gem. She is so easy going and sweet. She was great with Noah and it was nice to have someone to hang with and someone to watch The Kardashians with. Thanks gorgeous girl :)

It was so great to have them here, they all have there own unique wonderfulness. Nana Dot would take Noah when he woke up in the morning so we could sleep a bit more. Noah very often had a snooze with Nana. Di had a knack for holding Noah just the way he likes it and would tell him very interesting stories and Noah always seemed to fall asleep right on Grainee, when he wasn't vomiting on her that is. They all learnt how to look after Noah and really gave us a break while they were here. And who knows hopefully they will all be moving here soon.......