Tuesday, May 24, 2011

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.

Friday, May 20, 2011

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.

Thursday, May 19, 2011

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.

Tuesday, May 10, 2011

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

Friday, May 6, 2011

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