The place where dreams inspire hope and a permanent smile :)

On the 28th may 2014 taneshas dream came true we was sent by make a wish uk to walt Disney world in orlando florida to stay at the give kids the world village for a week it was a special week as it was also tanesha 5th birthday and she wanted to meet woody and buzz.
On the morning of the flight we was all very nervous as this was our first time I was feeling anxious and tanesha was happy as larry watching all the planes out of the window and to be honest it was pretty amazing.

The moment we stepped off the plane I felt this place was special and it truly was we had to take a shuttle bus to the departure and a wonderful lady with an angel badge on  was stood there holding up a large sign with taneshas name on it she held taneshas hand as I pushed the luggage trolly and she went to get our taxi to gktw , on the way I thought I was in heaven it was so beautiful palm trees everywhere the stunning buildings and the people was so nice but this was just a small piece of it.

As soon as we pulled up outside gktw a young man came out to greet us sat us down and went through the basics and gave us our cards which was our door key as well as our meal card he got buggy which looks like a golf cart and our bags and gave us a tour of the village explaining everything that we needed to know and giving me the times for the meeting later on I was gobsmacked this place was more than amazing and the smile on taneshas face from the moment she stepped through the house of hearts door was priceless.

        While I went to the meeting to get all the info of our shuttle bus and our park tickets tanesha went to try out the water feature with her sister and she had a blast I have never known a place like this ever so clean and beautiful the volunteers are so helpful and friendly and go above and beyond to help in any way they can even at meal time they carry your trays to the tables for you although we totally not use to this and felt bad we just let them get on with it they were very persuasive haha they are true angels.

Every morning we got up we had a good morning from everybody as soon as you step out the door to go for breakfast, the gingerbread house was an amazing restaurant place where they do your meals and its truly beautiful they have every Disney toy you could ever imagine around the top on shelves from teddies,cars,dolls tanesha loved looking at them all while we was eating and the food was lovely too.
One of tanesha favourite things was the carousel she rode the lion on there a few times a day every day without fail .

and I never seen her smile so much has she did on there and also meeting ms merry and mayor clayton,

she had a tuck in on her birthday, went to the mayors surprise birthday party, dressed as woody to the Halloween party, went to the winter wonderland parade , sat in front of the snoring tree, had fun in the pool and water feature, rode the train at amberville ,played mini golf in her own funny way dodging the water sprinklers along the way lol ,watched movies at the theatre she had a ball priceless moments that we will treasure forever.

 

 

ICE CREAM FOR BREAKFAST!!!!! yes you read right ice cream is served in the ice cream palace every morning and you can have it for breakfast in a cone on pancakes with syrup or a yummy banana split ( this was my favourite) as well as the rest of the day im surprised I dint put on 2 stone with the ice cream I consumed and tanesha had a cone every day and a banana split on one of the days yummy we now do this at home !!

Since I have started the chd journey with tanesha I have met many wonderful people some of which have become close friends ,I love meeting new people and hearing their stories this trip was no different, I have a chd friend that I have on facebook but we had never met as we live in different countries but gktw brought us together and I finally got to meet cherish wells and her husband and 2 beautiful children malaki and zebediah (sorry if the spelling is wrong) zeb is a heart warrior like tanesha and also has a brain condition but he is the sweetest little darling

and him and tanesha enjoyed looking at woody together and also spent a little time having there pic took with characters we will never forget these guys and miss them dearly.

my friends are important to me and have been a big part of my life since tanesha was born they become like my family  to me and  tanesha  before we went to gktw I got talking to a wonderful lady called Janine Russell  she is british but moved to florida years ago and is now a volunteer at gktw we finally met Janine and her husband john while there and shes truly is amazing she made us feel at home and introduced us to some of the other volunteers she went shopping with us for our souvenirs  and tanesha loves her we loved spending time with her and she will always be part of our memories of this wonderful place and also have a place in our hearts.

 

 







One of the most treasured memories that we have from the trip is a star that tanesha wrote her name on and it has been placed on the ceiling of the castle of miracles in the star tower there are thousands up there it is so overwhelming to see them and we will hopefully save enough to come back and see it in a few years time and also volunteer there ourselves we have one word for this magical place that gives sick children hope

 

                                                                     AWESOME !!!!



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A CHD BATTLE - Tanesha's world

by Amanda Bell on Wednesday, January 18, 2012 at 9:07am

Tanesha was born on the 31st may 2009 at 5.55am weighin 9lb 10oz 14 days late after a normal but painful pregnancy (mornin sickness throughout,spd,sciatica) 2 scans and a very painful forceps delivery leavin me with 32 stitches but I dint care I had my beautiful baby I stayed in hospital for 4 day cos I was on a drip for blood loss and tanesha slept most of the time maybe wakin a couple of times for feeds,she was a struggle to feed from day one wouldn't latch on and when she did she would come straight back off so I mention to the nurse and she said its prob the drugs(pethedine) I had in labour so I rested til I was allowed home .

We arrived home and my family came to see her with a gift of clothes and teddys for her all while she slept ,as the days went on I still struggled to feed her so a breastfeedin link worker got brought in to try help but she didn't know what was wrong as she was latchin on but seemed to be fightin with it and come back off and when I bathed her I noticed she was breathin fast and bobbin her head I told the midwife and she looked at her carefully while counting her breaths which was 71 so she said she would start to weigh her and see what happens.

3 weeks on now and still no better wi feeding and sleeps most of the time and I'd started to notice she was sweaty and had a cold clammy feel to touch so again I told the midwife somethings wrong and she weighed her and she had lost 70g overnight so she said right we will have her in so I was booked on the assesment unit at BDGH where they checked her and came to the conclusion that she had reflux and sent me home with gaviscon so over the weekend I tried it with no improvment so on the monday I took her back as now she had started vomitin every feed (what lil bit she had) a lovely young doc came to see us and saw her vomit all over floor as he walked in the room so he picked her up and wiped her down and lay her on the bed checked her femorals and her liver which was very enlarged and then seem to spend ages listenin to her chest I asked if all was ok and he said ill just be a min and left the room then in walked another doctor 5 mins later tellin me he had gone to get the registrar he listened too a few times and said they need the registrar there so I waited for what seemed like forever ,he walked in the room and introduced himself and looked and my baby said she's beautiful and listened then he turned to me and said "I'm really sorry we've found a heart murmer has anyone else mentioned it " I said no is she goin to be ok ? I got no answer except that he was sendin her for an xray of her chest and bloods doin ,we went and came back and waited a doc came in and said the results showed streaks on her lungs so they wanted to do a lumbar punture I refuse so they said well will get someone else to see u .

An hour later a curly haired man dr kerrin came to see her he was lovely he said she didn't need the lp as he was 99per cent sure it was her heart and that they was transferrin me to leeds the next mornin so all that night I sat watchin tanesha sleep as I sat cryin by her cot I was so scared , the next mornin they got an ambulance to take us to leeds with a nurse when they they took us into a room with a big machine and was asked to undress tanesha and lay her on the bed straight away the doc said she is very breathless and she started the scan ,my heart was poundin so much I could have sworn u could have seen it through my top after what seemed like hrs scannin she turned to me and said " there is something wrong with ur babys heart she has COMPLETE AVSD(COMPLETE ATRIOVENTRICULA SEPTAL DEFECT) I will draw it to explain" and she went got some paper and started to draw, I struggled to see it as tears started to fill my eyes I tryed to ask questions but the words wouldn't come out so I kissed tanesha and passed her to the nurse and ran to the toilet to be sick and rang my sister and family .

When I came back out they had already put an ng tube for feedin and oxygen tubes on her she was so upset I just sat there crying holdin her I'll never forget the look on her face as I picked her up she was so frightened the next few days was a blur nurses takin blood docs doin tests I just wanted them to leave her alone it drove me insane hearin her cry all the time and not able to do anything , the docs on ward round said the same thing every mornin "she needs surgery as soon as possible". She was slowly gettin worse wasn't keepin anything down now and her weight was 7lb 4 and they kept her sadated most of the time cos her hr. Would hit the 200s .

2 week after gettin there the nurse told me the surgeon wanted to see me intoduced himself as kevin watterson (god or magic hands) his words I will never foget he said" this is a serious condition a very hard surgery we have to patch 2 holes one at the top and one at the bottom and then split the common valve and hope it don't rip cos it will be paper thin ,she has a 1 in 4 chance of dyin on the table there was lots more he said a lot after that was a blur he said any questions and I just shook his hand and said plzzz fetch her back to me and he nodded and said I will do my very best and left the room I sat in there for a good hour cryin and gettin my thoughts together as they was takin her down at 8 the next mornin and the thought of maybe not seein her again kept seepin through .

The next mornin at 8 they gave me gown to put her in and we walked down to the threatre it was the worst day in my entire life she lay there looking at me as they placed the mask on her face I felt so guilty with tears rolling down my face I kissed her cheek and wispered ill see u soon I walked out the doors clutchin her teddy she was holdin.

My friend who came with me and my sister tried to keep me occupied but the pain was so bad my mind wouldn't wonder far from my phone as I glanced every few mins it seamed. Mr watterson said it would take around 8 n half hours it was a very long day 8 hours came and went and nothing I went and sat back on ward 10 pacin the ward after 9 hours one of the nurses said they was takin her to cicu so I could go down , I got in there and I was scared there was so many people round her bed that I couldn't even see her I had to go into a room cos mr watterson wanted to talk with me so my sister came with me I sat there shakin as he walked in the room and he smiled and said it went well but was a very difficult op he had had to change a few things as her valves was too thin to sew them the way he would normally and they would have ripped otherwise I was too upset to ask anything my sister asked all the questions as I listened I went over and shook his hand and said thanku soo soo much I will never forget what u have done and he smiled and left the room . We was took to see tanesha she was so swollen tubes coming out all over and her chest was left open cos he said her heart was very enlarged they said the next 48 hours are critical .

The next 2 days went so slow they kept her asleep and giving her lots of dif meds to keep her stable her blood pressure was up and down and she had complete heart block so she was on temp pacin wires but she was doing well , I sat by her bed day n night takin breaks for food and naps, I was scared to touch her at first cos of her chest been open it took a week before they could close it so I was real happy when they did as they could try to wake her up soon so through the next week they weaned her down so they could slowly wake her I was so happy when after 2 week she opened her eyes for the first time.

She went back up to hdu 3 week after her ohs and seemed to be doing well but was still on the pacin wires as her hr was too low so was talkin about puttin a perminant pm in but didn't want to as it was risky so they left her for a while and just kept checkin the voltage on the temp ones and they needed to get a canula in but it was a struggle as all her veins had shut down so they decided to change her arterial line in her neck and use that I was a total bitch that day flipped over everything they prodded and poked her all day told me it was guna take half hour to change it and an hour and half later they was still holdin her in same position tryin to get line in her neck so I flipped and was took off by the psycologist and I'm not ashamed to say that all this crippled me mentally and because of the line change she caught septacimia and had to have the line removed and they managed to get one in her arm to use for 10 days antibs I came in one mornin and she was grey I thought I was losin her I screamed at the nurse to get the doc and he came and said it was cos of the septacimia and they was doin all they could and if she dint improve by the next mornin they would take her back to cicu as they was nothin more they could do for her but one of her cultures and scans also showed she had nec of the bowel so she then had to go 7 day with no food just iv fluids this was complete agony for me watching her starving I couldn't hold her has she screamed for milk and I just broke down was seein the psycologist a couple of times aweek by now it was good to get my feelings afears out as I was on my own the whole time and I did give the nurses a hard time I do hope they now forgive me for that :s

Tanesha made slow but steady progress and we slowly got moved up the ward closer to the door we met some wonderful people in the lgi a couple of people I spent a lot of time with I was sad to leave them but glad to be going home well back to our local for feedin cos tanesha was still tube fed and after 8 week at the lgi tube feedin was a doddle so I was happy and after a week in barnsley tube feedin her myself we went home without the ng tube fully breastfeedin I was so happy but scared but the nurse came out twice a week for 2 month to check her sats and heart rate and she continued to do well I continued to check her sats at home and in august 2010 I found her hr to be 55 after she had become more tired and was sleepin more so I rang nhs direct and they rung ambulance so we went back into hospital where they put her on a 24hr monitor (after me arguing wi docs cos they said she looked fine ppfft) the 24 hour ecg showed she had complete heart block and we was transfered back to leeds where she had a pacemaker fitted all went well and we came back home 2 days later she still gets breathless and sweaty but this is due to her leaky valve and seems to pick up a lot of infections but she is doin great I am sooo greatful to kevin watterson/warresena and all the staff at the lgi I know she will poss need more surgery as she grows on the valve and pacemaker changing but she is strong in every way, a true fighter,my little miracle xx

amanda

taneshas mummy