Blairs Wish ~ IMPORTANT UPDATE FROM JULIA SAWER ~ PRESIDENT & FOUNDER BLAIRS WISH- FIRSTLY....This needs to be said..... I want to apologies for having to use the Blairs Wish page to update the many people who have contacted our family about what has recently happened. This page was NOT originally set up for the financial benefit of our family, nor was it a place for me to share personal information about OUR families needs. It has always though been a place to share my beautiful boys successes and daily struggles. Blairs Wish has always been and WILL ALWAYS be about helping Central Coast families like our in need. Julia So much has happened since last week... where to begin. We have been contacted by SO many truly kind and generous people whom have never met us.... THANK YOU. (I will go into this in a bit more detail later) First let me let you all know that Blair is doing amazingly well with all the craziness of the past & coming weeks. Because mummy is no longer allowed to care for him he is very confused and emotional and keeps asking Mummy... are you better yet? & Mummy.... where does it hurt? He is such a beautiful boy. As of early last week Blair went from the 3 days of school a week till full-time. A BIG change for a little boy who got very tired with just the 3 days! ( Also a very difficult change for mummy who loved having her baby boy with her those two days a week... I feel like I have lost my baby). PLUS the school managed to for Blair to be transported to and from school each day which means he is picked up at 7:15am and dropped off at 4:30pm..... a VERY long day indeed. He has been exhausted BUT he LOVES the bus. ( I will share some photos of the day he was first picked up.... biggest smile EVER!) The bus driver Glen and nurse Joan on the bus are one-in-a-million.... they treat Blair and the other kids on the bus as their own. I cant thank them enough for caring for my boy. Blair now wakes every morning and the first thing he says now is, Wheres Glen? :) Its a big change for Blair but he is coping so well.... he is really missing his Mummy lifting him... giving him big squeezes, our special snuggles together on the floor and so much more. Now for the update on Brayden. As many of you know last Tuesday night, Blairs big brother Brayden, who is 11, and has Autism, ADD & Dyslexia collapsed suddenly and started convulsing. He became unresponsive and was rushed to Wyong A & E where he was then transferred and remained overnight at Gosford Hospital. An MRI was done and thankfully there was nothing evident. The EEG however showed spikes of activity which means that it appears that Brayden had for unknown reasons, some form of epileptic seizure. All the bloods that came back were clear which proves that his temp of 39.1 at the time could not have caused a febrile convulsion (which are unlikely anyway in a child as old as 11). So.... Brayden was discharged and until he has another seizure (and we are hoping he NEVER will) they wont start any type of treatment. He has an appointment on Thursday with his paediatrician for review. So for now it is just a watch & wait scenario and pray to god it doesnt happen again. He is back at school and they are happy to monitor him closely there. Now for the update on me. As most of you are aware 9 days ago I managed to end being up rushed to A&E. I could barely walk, pain was excruciating and had a rather frightening loss of sensation in my right leg. I was mind you, despite the pain still lifting Blair and driving him each day up & down to school at East Gosford, plus having to lift his wheelchair in and out of the car. Turns out that I have a prolapsed L5 disc in my spine, and the damage causing severe swelling that has impinged a nerve causing the loss of sensation and difficulty walking. But me being me.... I kept on pushing through the pain... what choice did I have with the 3 kids to look after and Blair so dependent on me in his wheelchair. I had a CT Scan to confirm the injury within the hour. So.... I am home now for a month of conservative treatment till I see the spinal surgeon at the RNSH Spinal Clinic on April 30th for a surgical review. Which means I cant lift anything over 2kgs.... (a bag of sugar weighs 2kgs) can not take care of Blair... I can not lift him (Blair weighs 21kgs), I cant do his hourly turns at night, his 2nd hourly toileting... none of it... and it breaks my heart. I can not bend or twist and due to the strong meds they have me on 4 times a day (Endone, Diazepam & Lyrica) I can not even drive at the moment. At this stage I have been told that they are hopeful that I will get 100% sensation back in my right leg. I am for the month SUPPOSED to be on bed rest. I am to walk around home with a walking frame short distances only and use a wheelchair to go anywhere else. I have an MRI appointment at 7am tomorrow morning at Gosford Hospital and then a review with my specialist at The Cancer Care Centre at 12pm. My specialist at the Cancer Centre is concerned that with my bone marrow problems, that there is a chance that because the back injury is so severe and that it worsen rather quickly over a period of days (unlike a normal back injury where you lift something or twist and you are in immediate agony), that there may be a lesion on my spine causing the damage. We will hopefully know more after the MRI and specialist review tomorrow. To say that I am a mess right now would be an understatement. I feel lost... I am scared. My kids have been through SO much this week and they have been amazing. Em is struggling though.... being almost 15 she sees, hears and knows more. And Chris is doing the best he can trying to be me and daddy all in one. Watching him struggle and I MEAN struggle is driving me nuts... I feel so guilty that I cant help. I feel such a burden. And he just keeps it all in... I know he is scared but he wont talk. He just gets angry. I worry about him... about us.... our relationship. How much more can one couple dealing with all this and more take? There are a lot of people/agencies trying to sort out respite care so that Chris can return back to work soon... and he NEEDS to. (Chris works two jobs so we can survive, he has been given carers leave from one job, till I see the Spinal Surgeon on April 30th), BUT he needs to go and do his other job (self employed electrical contractor) so that we can live. The problem with us having possible full-time carers is that our house is NOT equipped for them to be able to look after Blair within their OHS Guidelines and do so safely. We need ramps, concrete paths, flooring changes, doors widened, bathroom mods. Some of these essential modifications we have been waiting for now for over 3 years. I lift Blair in and out of the car and around the house each day as it is just too difficult to do so in his wheelchair. We have also in the week, whilst making calls desperately trying to get help, found out that the van we purchased for Blair, with the intention of one day maybe being able to afford the approx. $30,000.00 to get a hoist installed with the help of funding, that they will NOT modify the van as it is more than 3yrs old. What do we do? Now the THANK YOUS..... we have been completely overwhelmed by the generosity of people whom we have never even met. I have had so many phone calls, messages, emails & texts and it means the world to me. I am sorry I have not have the chance to get back to you all sooner, but we were very lucky to have been given the opportunity for the family to have a respite break over the weekend at Camp Breakaway. Massive THANKS to all at Breakaway, Merrilyn, Dawn, Gae, David, Dianne and anyone else I forgot, thank you so much needed break, time-out and for giving our kids the chance to try and forget and just be kids. To the Shane, Darlene, Mark and all the team & supporters at the S.P.C.C -Special Performance Car Club THANK YOU SO MUCH, these guys held a raffle over the weekend at a Show & Shine at Lakehaven Autobarn and raised $254.25. You are amazing. They also gave Blair the most amazing Peter Brock Bathurst winning exact model car that he SO wanted to take to bed last night. Huge THANKS to Christie Hinton from OneWorld who is holding an online fb Auction to raise funds for Blair too. Your kindness and generosity is so very much appreciated. I must also thank the wonderful Lydia & Chris at the ShoreThyme Restaurant and Norah Head that have recently donated $1134.00 to Blairs Wish for our Loan Pool and were there the night that Brayden collapsed... you were so wonderful, so caring, thank you for looking after my boy. And to Kym.... thanks for cooking dinner one night last week it was so yummy. I am sorry if there is anyone I have forgotten. For now I am sore and very tired. I will be heading for a rest. Any messages will be answered as soon as I can. For now I ask for nothing more than positive thoughts for my appointment tomorrow... if you are one to pray..... then please pray. THANK YOU ALL. Love to all especially from Blair xxxx (I will post some happy photos of Blair later, Jx)
Posted on: Mon, 07 Apr 2014 04:30:43 +0000
Trending Topics
Recently Viewed Topics
© 2015