Re: Message to all/From Tina

[Guest guest]

Tina,

What an amazing story of a saintly MUM and extraordinarily SPECIAL SON. I think and pray for you and your family daily.

Love and Prayers,

Norma

[Guest guest]

Hi Rob,

Do you really want to hear me moaning on about how hard my life is:-)

I would think everyone is totally fed up with hearing my tales of woe is me and us! Warning this is going to be very long and I will not take offence for anyone deleting before the end!!!

was born with Down Syndrome, his natural parents felt totally unable to cope with the challenges of a child with a disability and so asked for an adopitve family to be found for him. We were that family.

was always a happy cheeful soul from our first meeting. He first gave us cause for concern when his eagerness to feed fell off. After two days of very little feed and a lot of coughing we took him to the doctors who diagnosed Bronchiolitis. Within two more days he was taking virtually no milk so we ended up in hopsital, an xray showed not only a severe chest infection but also an enlarged heart. We had lost our first adopted son Luke in April 1990, this was November of the same year and we were totally devestated to discover the baby who was supposed to be a Healthy child with Down Syndrome had actually got an apparantly serious heart defect.

To cut a long story short in March of 1991 the week after his 1st birthday was taken down to theatre for open heart surgery, we were given a 3% chance of survival...8 days later we took him home! That just about sums up. He rarely presents with the right symptoms to get a diagnosis then beats off the odds and comes out smiling.

For two years we battled with heart failure, recurrent chest infections...always needing us to kick and scream to get a cxhest X-Ray because he never really presented as ill until he was critically so. One episode will stick in my mind forever. We had taken him to the ward because he was very unwell, we knew something was not right but the GP could not hear anything on his chest, we had been in hospital for three days and our consultant who had learnt his leson on the Hillier kids, was on holiday and the stand in was not going to listen to a mere Mum. He kept telling me I was worrying over nothing and had a cold and because of his Down Syndrome and his heart issues it was taking him more effort to shake it off! Eventually I asked him to refer us back to Alder Hey where had had his surgery. He said he would ring them and see if they could take him.

He came back looking a bit sheepish, apparantly the registra there had insisted that they send by ambulance rather than us take him in our car which the consultant had said we would have to do. Thank Goodness the docs at Alder Hey had taken our word for how sick we felt was. He actually stopped breathing twice on the way over and we ended up with a police escort the last aprt of the journey. He had double pneaumonia and pleuresy! We were transferred back to Burnley, our local hospital two weeks later, where the same consultant who had reluctantly sent us was still not prepared to appologise for getting it so wrong! had been so cheerful and happy all through that episode, the only time he is distressed is when his temperature is raised, once that comes down he is usualy happy as larry!

's mental abilities are diverse, he has an amazing memory for places and people. remembers staff names in the hospitals after wekes or months even of not seeing them. He knows what programmes are on on what days. Who comes when and where he last saw soemone. My parents came to the Island for a holiday bringing my nephew and his friend, that was when i was pregnant with and she will be 6 this August. Whenever we go to the holiday park where they stayed, he asks if Grnadma is thee with Philip? His reading skills are about a year one level, and writing he finds very difficult, he can now copy under what we have written and this week has mastered writing his numbers from 1- 10.

His social skills are far in advance of his cognitive skills but he is happy and content.

I suppose he breaks your rule of dealing with suffering and pain Rob.

has undergone 5 major hip surgeries, three of them in an 18 month period from July 2000. From the first Op that month to next being able to get on his feet was 15 months and he rarely complained throughout it all. He amazed us and made us so proud of him. However it was during that period that we think the largest damage was done to his lungs. After the first surgery then he was sounding chesty to us. His saturations took a long time to resume the high ninety's and he had a persistant hecking cough. 's cough reflex is very poor and he often chokes because he does not effectively protect his airway when eating. As you can imagine eating whilst laying virtually flat on your back is not a good position for someone who cannot protect their airway! Many Many times we asked them to do a chest x-ray because we were concerned. They kept saying he has no temperature and is not coughing too badly we don't think it is necessary.

In May of 2001 the cardiologists were insisting on doing their investigations on his heart and he was admitted for a TOE under general aneasthetic. 5 doctors listened to his chest ranging from the most junior to the consultant aneathetsist, all thought it was clear. Then before he went down the Cardiologist decided he wanted a chest X-Ray...thank goodness!!! He had a partially collapsed lung with consoldation of the left lower lobe. IT was another 9 months before we eventually got the diagnosis of bronchiectasis. Since then his quality of life has been so much better because his chest exacerbations are being treated. He was having propholactic antibiotics daily, and three monthly bouts of IV's. However this regime that has so improved his life to know has also been partially to blame for the resistant infection that nearly cost us our son over the last few weeks. Once again he has beaten the odds and fought back, to look at himtoday you would never believe how ill he was just a

fortnight ago. There is of course now this awful cloud over us, because he has had such resistant bacteria, and the bugs are those common in CF...which is how his lungs behave, it is now very likely that when he does get an exacerbation it is going to be of a resistant bug.

However for now we have a healthyish boy who has a lot of living to do while he is well. His love of life and enthusisam will not allow us to mourn what may be.

God's Grace is sufficeinet unto the Day and only today!

The Manna in the wildernes was only enough for the day could not be gathered up and saved for tomorrow, so is the Grace by which we live, we cannot store it up it is only seficient for the here and now..tomorrows Grace will come with tomorrows challenges.

Hope I have not bored you.

I have tried to cut our story short as I can.

Hugs

Tina Hillier Mum to , 13 years old and possesor of an Extra Special Chromosome. Rosie 11 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 6, A budding Artist and Singer, And who is 4 years old and a big school girl now! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@...

www.cdlsrosie.homestead.com

Yahoo! Messenger - Communicate instantly..."Ping" your friends today! Download Messenger Now

[Guest guest]

Tina......I know I've been missing from the group for some while now.....I haven't been feeling really great and I do more lurking on here than anything right now..... but I just had to write and say that I didn't realize that jonathan was adopted.....I always said that I thought you were a wonderful inspiration, I swear sometimes all I have to do is read what one of your days is like to feel like mine isn't even close to being as hectic as I think it is......but after reading your thread tonight.........I can honestly say......you and your husband just gave the word parents a whole new meaning in my book.......you are such an astounding family and your children will be wonderful adults because of it (and in this time and age that is something that we pray everyday that our children become after all our preaching and teaching) my hat goes off to your whole family.....I can only hope there are more out there like yours and then the world seems like a much nicer place to be........ Sondra

p.s. Hello to all my lung family out there.....I hope your all doing good and welcome to the newbies.... and a special wave out to my friend Lee........ Sondra

[Guest guest]

Dearest Tina, I know you're not looking for accolades. Please accept my

love and prayers. You will always be on my mind. (and I did read all the

way through and I feel like a better person now because of you. There's

hope for this world. Thank you for sharing your wonderful life.

Ladutko

>

>Reply-To: bronchiectasis

>To: bronchiectasis

>Subject: Re: Message to all/From Tina

>Date: Thu, 11 Mar 2004 20:26:04 +0000 (GMT)

>

>Hi Rob,

>Do you really want to hear me moaning on about how hard my life is:-)

>I would think everyone is totally fed up with hearing my tales of woe is me

>and us! Warning this is going to be very long and I will not take offence

>for anyone deleting before the end!!!

>

> was born with Down Syndrome, his natural parents felt totally

>unable to cope with the challenges of a child with a disability and so

>asked for an adopitve family to be found for him. We were that family.

> was always a happy cheeful soul from our first meeting. He first

>gave us cause for concern when his eagerness to feed fell off. After two

>days of very little feed and a lot of coughing we took him to the doctors

>who diagnosed Bronchiolitis. Within two more days he was taking virtually

>no milk so we ended up in hopsital, an xray showed not only a severe chest

>infection but also an enlarged heart. We had lost our first adopted son

>Luke in April 1990, this was November of the same year and we were totally

>devestated to discover the baby who was supposed to be a Healthy child with

>Down Syndrome had actually got an apparantly serious heart defect.

>To cut a long story short in March of 1991 the week after his 1st birthday

> was taken down to theatre for open heart surgery, we were given a

>3% chance of survival...8 days later we took him home! That just about sums

> up. He rarely presents with the right symptoms to get a diagnosis

>then beats off the odds and comes out smiling.

>For two years we battled with heart failure, recurrent chest

>infections...always needing us to kick and scream to get a cxhest X-Ray

>because he never really presented as ill until he was critically so. One

>episode will stick in my mind forever. We had taken him to the ward because

>he was very unwell, we knew something was not right but the GP could not

>hear anything on his chest, we had been in hospital for three days and our

>consultant who had learnt his leson on the Hillier kids, was on holiday and

>the stand in was not going to listen to a mere Mum. He kept telling me I

>was worrying over nothing and had a cold and because of his Down

>Syndrome and his heart issues it was taking him more effort to shake it

>off! Eventually I asked him to refer us back to Alder Hey where

>had had his surgery. He said he would ring them and see if they could take

>him.

>He came back looking a bit sheepish, apparantly the registra there had

>insisted that they send by ambulance rather than us take him in

>our car which the consultant had said we would have to do. Thank Goodness

>the docs at Alder Hey had taken our word for how sick we felt was.

>He actually stopped breathing twice on the way over and we ended up with a

>police escort the last aprt of the journey. He had double pneaumonia and

>pleuresy! We were transferred back to Burnley, our local hospital two weeks

>later, where the same consultant who had reluctantly sent us was still not

>prepared to appologise for getting it so wrong! had been so

>cheerful and happy all through that episode, the only time he is distressed

>is when his temperature is raised, once that comes down he is usualy happy

>as larry!

>'s mental abilities are diverse, he has an amazing memory for

>places and people. remembers staff names in the hospitals after wekes or

>months even of not seeing them. He knows what programmes are on on what

>days. Who comes when and where he last saw soemone. My parents came to the

>Island for a holiday bringing my nephew and his friend, that was when i was

>pregnant with and she will be 6 this August. Whenever we go to

>the holiday park where they stayed, he asks if Grnadma is thee with Philip?

>His reading skills are about a year one level, and writing he finds very

>difficult, he can now copy under what we have written and this week has

>mastered writing his numbers from 1- 10.

>His social skills are far in advance of his cognitive skills but he is

>happy and content.

>I suppose he breaks your rule of dealing with suffering and pain Rob.

> has undergone 5 major hip surgeries, three of them in an 18 month

>period from July 2000. From the first Op that month to next being able to

>get on his feet was 15 months and he rarely complained throughout it all.

>He amazed us and made us so proud of him. However it was during that period

>that we think the largest damage was done to his lungs. After the first

>surgery then he was sounding chesty to us. His saturations took a long time

>to resume the high ninety's and he had a persistant hecking cough.

>'s cough reflex is very poor and he often chokes because he does

>not effectively protect his airway when eating. As you can imagine eating

>whilst laying virtually flat on your back is not a good position for

>someone who cannot protect their airway! Many Many times we asked them to

>do a chest x-ray because we were concerned. They kept saying he has no

>temperature and is not coughing too badly we don't think it is necessary.

>In May of 2001 the cardiologists were insisting on doing their

>investigations on his heart and he was admitted for a TOE under general

>aneasthetic. 5 doctors listened to his chest ranging from the most junior

>to the consultant aneathetsist, all thought it was clear. Then before he

>went down the Cardiologist decided he wanted a chest X-Ray...thank

>goodness!!! He had a partially collapsed lung with consoldation of the left

>lower lobe. IT was another 9 months before we eventually got the diagnosis

>of bronchiectasis. Since then his quality of life has been so much better

>because his chest exacerbations are being treated. He was having

>propholactic antibiotics daily, and three monthly bouts of IV's. However

>this regime that has so improved his life to know has also been partially

>to blame for the resistant infection that nearly cost us our son over the

>last few weeks. Once again he has beaten the odds and fought back, to look

>at himtoday you would never believe how ill he was just a

> fortnight ago. There is of course now this awful cloud over us, because

>he has had such resistant bacteria, and the bugs are those common in

>CF...which is how his lungs behave, it is now very likely that when he does

>get an exacerbation it is going to be of a resistant bug.

>However for now we have a healthyish boy who has a lot of living to do

>while he is well. His love of life and enthusisam will not allow us to

>mourn what may be.

>God's Grace is sufficeinet unto the Day and only today!

> The Manna in the wildernes was only enough for the day could not be

>gathered up and saved for tomorrow, so is the Grace by which we live, we

>cannot store it up it is only seficient for the here and now..tomorrows

>Grace will come with tomorrows challenges.

>Hope I have not bored you.

>I have tried to cut our story short as I can.

>Hugs

>

>

>

>Tina Hillier Mum to , 13 years old and possesor of an Extra Special

>Chromosome. Rosie 11 ( who enjoys a life enhanced by the Joys and Trial of

>CdLS) 6, A budding Artist and Singer, And who is 4 years

>old and a big school girl now! Isle of Wight UK

>http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@...

>

>www.cdlsrosie.homestead.com

>

>

>

>

>---------------------------------

> Yahoo! Messenger - Communicate instantly... " Ping " your friends today!

>Download Messenger Now

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