Big week drawing to a close. Jovie has moved on to gravity feeds (no more pump, so just like normal feeding but in her nose still) and has also started to take milk from a little syringe. Her weight is up to 11'11 and she is getting on with her new, longer more flexible custom made trachey brilliantly.
All this great stuff pales in significance to the big events this week. Monday saw both me and Lorn fully signed off to look after jovie on our own. Now all we need is a house and after crossing a few i's and dotting a few t's we will finally be out of here.
The second thing was Jovies first ever trip back to Worcester, not only the furthest she's been from hospital but also the first time she has been "home". Lots of family and friends were there to see her of course and it was truly amazing to have her back albeit just for the day. It does however compound the frustration of being here even more.
With being signed off we are now free to take her out whenever we like without a nurse and have made the most of this with a lazy day today lounging out back at old mcdonalds all day. Great fun.
Tomorrow sees another first for us as for the first time since jovie was born, (16 weeks ago!) me and Lorn are going to be spending the night away from her, as we stop in cheltenham for szabos wedding, a dual celebration as its our two year wedding anniversary too. Babysitter in place we will miss her like mad but do our best to enjoy ourselves, with the help of a drink or two I imagine...
The end of all this is slowly feeling within reach. We can now bid on houses back in Worcester so *hopefully* we will be reporting on news of a new house and an escape from all this very soon.
Saturday, 27 August 2011
Tuesday, 23 August 2011
Charity Auction Donation Request
Jovie Wyse was born on Wednesday 4th May with a rare condition called Congenital Central Hypoventilation Syndrome, or “Ondine Curse” as it is often called. The condition affects the central nervous system, essentially stopping Jovie from breathing when she sleeps. It is an extremely rare and very dangerous disease, especially in newborn babies and as a result of this Jovie had to undergo a tracheotomy and requires 24 hour ventilation.
After spending her first two weeks in Worcestershire Royal Hospital, Jovie was moved to Birmingham Children’s Hospital. With Jovie’s dad working two jobs in Worcester and her mum unable to drive this presented an almost impossible scenario for the new parents. Thankfully they were informed about the Ronald McDonald House Charity which provides an apartment complex attached to the Children’s hospital Birmingham, open to parents of babies being treated in the hospital. Many of you may have given money in some form to this great charity before, albeit unbeknown to you. Those penny jars on the counter of McDonalds? They, along with masses of charity work from the individual houses bring in the money that builds these apartments and maintains them all year round.
As well as providing 60 bedrooms, the Birmingham House offers families the opportunity to cook together, to eat together and share their experiences of the day. For families coming to the Children’s Hospital for day care, there is also a purpose built lounge, kitchen and play area on the ground floor for their use throughout the day. The House charges the parents nothing at all and is entirely funded by charity work, fundraising and help from volunteers and other kind donations
Without the generosity of the Ronald McDonald House, which receives no funding support from the NHS of government, Jovie’s mum and dad would have been stranded and forced to either leave Jovie alone in hospital, or spend a fortune living out of hotels. Now four months down the line, it a God send that neither of those things had to happen.
Soon, Jovie will be in a stable enough position to get out of the hospital and come home for the very first time. At which point the Wyse family will be returning to Worcester. As a token of their gratitude to the Ronald McDonald House Charity they are hoping to raise as much money as possible to present to the House when they leave. The key way in which they plan to do this is a Charity Auction, which will take place at the Marwood in Worcester on a date yet to be confirmed. What we require are donations to be auctioned off at this event, with the proceeds going towards the Ronald McDonald House in Birmingham. We hope to raise as much money as possible so welcome items of any price range, size or type. Anything from meal vouchers to brand new cars! Whatever you can afford to donate would be very gratefully received.
In addition to the actual auction event itself, a selection of the items on offer will be published in the Worcester News, (Worcestershire’s leading daily newspaper with over 14,000 readers per day) with the facility for members of the public to text in bids for their own chance to win the items (and to ensure we get as much money as possible for them!). Your business card will also be on display at the Marwood during the auction.
If there is anything at all you could donate to be auctioned, please contact me in one of the following ways;
Tweet;
@sunners14
@sunners14
Post;11 Peterborough Close,
Ronkswood,
Worcester
WR5 1PW
Ronkswood,
Worcester
WR5 1PW
Phone;
Chris on 07825 788729 / Kelly on 075981 83595 / Lorna on 078918 68705
Anything you can donate would really help us a lot and hopefully raise loads of money to help this brilliant charity that help so many families in such difficult times. There are a lot of great causes out there, yet this is one that really doesn’t get the coverage it deserves. For more information on Jovie’s condition, please visit www.cchsnetwork.org or the Ronald McDonald House Charity, here http://www.rmhc.org.uk/
To follow Jovie’s individual progress take a look at her blog! www.joviewyse.blogspot.com
Thank you from Jovie, and all the Wyse family and friends.
Sunday, 21 August 2011
Day 119 in the hospital...
As if spending the last four months in Worcester and now Birmingham hospital hadn't been bad enough, my evenings have just got all the harder to bare with the return of that bloody show. Well, at least Lorna is happy...
Having said that, for all intensive purposes it isn't all that bad here. Sitting and playing with jovie, all be it in a cramped space sandwiched in with the worlds loudest family, could never be described as being that bad.
A minor let down of a week draws to a close having not got the chance to take jovie back to Worcester as had been promised. Wednesday is now the day for our first trip home, apparently. As with much in this bloody place ill believe it when I see it. Tomorrow sees the final box ticked in our training; life support and the emergency drills. Not something we ever want to have to use but the final piece of the jigsaw. Once completed we can take jovie out around the hospital and grounds as much as we like without a nurse, and then once all sorted on the housing front, we. can. go. home!
The light at the end of that tunnel we have heard so much about really does feel like it could be just around the corner.
In many ways, its the knowing we may be going home soon that is making things tricky. Now we know we are going its becoming more and more difficult to put up with being here. Even being asked if we are ok by nurses has become a constant minor annoyance. This whole situation has stretched us to breaking point and we have really just had enough of this place and everyone in here.
A bit like how I feel after two minutes of watching big brother...
Having said that, for all intensive purposes it isn't all that bad here. Sitting and playing with jovie, all be it in a cramped space sandwiched in with the worlds loudest family, could never be described as being that bad.
A minor let down of a week draws to a close having not got the chance to take jovie back to Worcester as had been promised. Wednesday is now the day for our first trip home, apparently. As with much in this bloody place ill believe it when I see it. Tomorrow sees the final box ticked in our training; life support and the emergency drills. Not something we ever want to have to use but the final piece of the jigsaw. Once completed we can take jovie out around the hospital and grounds as much as we like without a nurse, and then once all sorted on the housing front, we. can. go. home!
The light at the end of that tunnel we have heard so much about really does feel like it could be just around the corner.
In many ways, its the knowing we may be going home soon that is making things tricky. Now we know we are going its becoming more and more difficult to put up with being here. Even being asked if we are ok by nurses has become a constant minor annoyance. This whole situation has stretched us to breaking point and we have really just had enough of this place and everyone in here.
A bit like how I feel after two minutes of watching big brother...
Sunday, 14 August 2011
I predict a riot
All fun and games up in Birmingham this week as we are forced to spend two nights locked in the hospital after the riots hit Birmingham. On one of the nights news swept across Facebook and Twitter that the hospital was under attack, one even claimed it was on fire! As she so often does, jovie slept through the lot. Too young that she is to be sent out to get us a new tv...
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
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