Hi my name is Gill and I am Kais mum.

Can't believe at last I am doing my own blog!!  Something I have talked about for so long, but never get around to doing it!!

So Charlotte came along and decided she would dedicate her time to doing this and here we are!!

Charlotte is a very special friend who is just amazing for taking up her personal time to do for us.  You realize when something like this happens in your life, who your true friend's are.  They are there through thick and thin and always there for a shoulder to cry on,something you soo need!!

I will keep you update on Kais progress and what he is upto which will include the good and bad times!!

I hope you all enjoy reading my blog and I look forward to the feedback and to make some new friends!

Any questions are welcome or here just for a chat!

7th Sept 2009, Kais First day at Nursery, Grangewood, Pinner.

Hi to you all,

Well Kais first day has arrived, what a strange day.  Hard to believe we have got this far!!! 

Me, Dad and Grandad dropped him off at 9am, decided best to leave him on his own, and we got a big smile as we left!!!

So we wondered around Uxbridge for a bit, to kill time.  I was worried sick, would he be crying??  Would he eat his yogurt??  Would he be as stroppy as he is at home!!!

We got back half an hour early to find him enjoying himself!!!  He did a painting, sat in a pushchair while eating his yogurt!!  Was really impressed with that, did kick off but not bad for his first day!!!

He got to met alot of people today, who will be involved in his day to day life at nursery so was alot for him to take in, but he chatted to them all in his own way!!

After chatting to his teacher, we decided 3 days would be better for him rather than 2.  As by the time Monday comes around he would have to get use to it all over again.

So he will go on Mondays, Wed and Thurs. 

They seemed really pleased with him and think he will be fine at school.  They agree he has a very strong personality and it needs to be channeled in the right way, Kai so knows what he wants!!

We got photos of his first day to take away, also a book they will write in every time he attends so I know how he got on, that is really good. Also I can write in there anything I think they need to know.

So really chuffed with his first day, feel very happy he is going to throughly enjoy his nursery days.

Will keep you updated and put photos on very soon./xx

 

14th Sept 2009, Disability

  I think this is a word, everyone can agree, we all try to avoid!!    It is something we all think, "This won't happen to me" but reality of life is it can happen to anyone.

 For us and I am sure for other parents in similar situations,  we were given Kai but we were not given the choice regarding disability, this we couldn't get away from, no where to run or nothing we could to change this.

 Your life was suppose to go down this certain path, the path you dreamed about, how this baby would come along and slot into your life.  Then it feels like you have been run over by a steam train, as all those dreams have gone and you go down this rocky path, you didn't want too or choose to go down.

 So you either drown or deal with life the way it is.  You have to make the most of what you have been given, as it could have been so much worse.  The hardest thing for me has been coming to terms with Disability and how different our lives are.

 Day to day things are so much harder, I would love to just get up one day take Kai and go out for the day.  Forget the medicine, forget the worry, where will I feed him, will I be able to heat it up??  Who will stare when he screams through his dinner!!  I wish I could just buy a drink and something to eat while out, but reality again hits you, you just can't do that.

 I watch a lot of people including close friends, thinking how much easier their 3 year olds are,  I am sure they are hard work, but for me, they are little independent people, able to do a lot of things for themselves, I do torture myself a lot thinking, what could have been….

 But the good things about having Kai, is I don't take a thing for granted.  I cherish everything he does, and think was a clever boy he is.  He is my world and I love him dearly.  He has such determination and really tries to do the things we ask.

 I have met along of wonderful people along the way, who I wouldn't of met had Kai not been disabled.   

Everyone who knows Kai, their lives has been changed too.   They are more aware of disability and Kais friends will grow up learning about it too, which is great for them and they will accept Kai for who he is. 

 I do wonder why this happened to us, a question that will never been answered, so I try to make the most of what we have, as who knows what is around the corner for us all.

 29th Oct 2009, Update on how Kai is doing.

 

   Hi to everyone,

Sorry been a while since I got on here.  Just wanted to update you on Kais life.

He now has his new pushchair.  He really likes it.  Am so happy as it was turning into a nightmare to take him out.  It is alot higher up and he is sitting correctly.  Very heavy to keep moving about, but not much we can do about that!!

He is still going to private physio weekly.  As I work full time my mum takes he most of the time, but a few weeks ago I had the pleasure.  I was amazed at how well he has come on.  He really listens to what she is asking of him.  His sitting has come on alot, still can not sit unaided but he is going in the right direction.  He uses his arms alot more now to push off.  Again it is all slow progress but at least he is going forwards!!

I remember the days when he would scream through the whole 1 1/2.  I use to walk out thinking I can't do this anymore.  So I am saying to any parents who are going through that, don't give up!!!  It took Kai over 6 months to realise he is not getting away with it and I am so glad I didn't give up.  Was upsetting to see him pushed to his max, but it has to be done to give him the best opportunity in life.

He is getting on well at nursery.  He enjoys his music play and swimming weekly.  I have seen an improvement in him since attending there.  He is trying so hard to talk and watches everything going on around him.

Tomorrow night is our first charity night!!!  Has gone around so quick!!!  We are all really looking forward to it and will update you all next week on the success!!

 

Wed 4^th Nov 09. Our 1^st Charity Night!

 Well we have finally had our first charity night, and what a huge success it was!!!

 Me and Dan are very fortune to have the support we do, we could of sold double the amount of tickets if the hall was bigger.

 Charlotte did an amazing job on getting the night together, she did not cut any corners and she thought of everything!!!

I know she wouldn't have been able to do this without Nickys help.  She feels without her she would of never of made the night!!!

 I have to say Charlotte would not let me or Dan do a thing for this night, she said from the beginning we were not to have the stress.  She sorted everything herself and even on the night we were not allowed to help with any organizing.

 Me and Dan were totally overwhelmed when we saw the hall. I had to fight back the tears when I walked in.

 Charlotte decided to show everyone Kai from birth until now with photos.  That was breath taking to see how far he has come.  When you see it in black and white, you think, how did we get this far??

 The children's area was fantastic too, Nicky, Sophie and Maryam went to so much effort for the children, thanks to you all.  Marc Broom used this area to take the photos which can be seen on his website www.timelessphotos.co.uk.

The children's goody bags were done by Jane, again no short cuts!!  They had everything in there!! All the kids were raving how good they were, so thanks Jane.

 Andrea was put forwarded by her lovely sister Collette to do the face painting.  It was only her 3^rd time doing this, but she did a professional job!!  I don't think she realised how many children there would be!!!  But they all looked fantastic.

 The night went really well, the place was heaving with people and the time flew by as so much going on.

 Again everyone was commenting on how great the food was so thanks to H G Walters for providing the meat, and Charlotte mum, Sue, Lauren, Dee and Ginny for arranging the buffet.

 All of Charlotte's family helped on the night, with selling Raffles tickets or collecting money for the Auction. I want to say a huge thank you to them as they took the pressure of Charlotte for doing this.

 Big thanks to Benny who let us use his hall and also by donating 10% of the bar takings.

 It was a very emotional night as Charlotte started off with her speech, which started me off crying!! Then Dan took over. He was really tearful as it has been such a difficult time for us over the last 3 years.  At times I never thought we would get through it. Now 3 ½ years down the line we have made huge progress with our lives and in Kai's.

 If it wasn't for this support of our families we would have fallen apart.  They have been there from the beginning, also dedicating theirs lives to Kai.  They have given us so much love and support.

Also our very close friends who have stood by us and been there for us.  For me personal I have always spoken openly about my feelings and thoughts, and the girls are always there to listen.  Having such great friendships that care and listen to you means the world.  Without all of these people I really don't think me and Dan would have coped or got as far as we have.

 We are both so proud of Kai.   He has brought so much love to our family and we cherish every moment we spend together.

 We don't know what the future holds for Kai.  But with the help of the "The Kai Phillips Trust" we are able to give him the best opportunities we can, and help him fulfil his life to his best potinetional.

 Wed 4^th Nov 09. Kai is to become a big brother!

 We can now share with everyone, Kai is to become a big brother!!  We are over the moon and very excited.

I am now 12 weeks pregrant and the baby is due 19^th May 09, day after Kai's 4^th birthday.

We have longed for this for a long time, and we are very happy things are going good for us.  

I will keep you updated on my growing belly!!!

 Tue 8th Dec 2009, Kai doing so well at school

  Just been told of by Aunty Yvonne for not updating the blog!!!  Sorry to all but been so busy at the moment!!!

 So update on Kai, doing really well at nursery. Had a meeting with his teacher and they are really pleased with him.  He has settled in so well and adapted to the routine.

Was a struggle in his chair but now he is sitting for longer periods and using the switches on the computer.

Kai does get frustrated as he can't communicate with us.  He is so trying to talk and does say Hello!!  Who knows what he will say in the future, but we all hope he can say a few more words!!

He loves the music at school and singing!!  Also loves story time, he listens very well and chats through the stories, in his own way!!!

 Sleeping has become a lot better at the moment.  He won't have a nap during the day anymore so is very grumpy from 3-7pm before bed!!  He just moans the whole time!! So once in bed he is happy!!

He still wakes in the night and for some reason, he likes to lie on his carpet with his teddies and quilt, plays for about 10 mins and then falls asleep!!  Very strange but works as we all get back to sleep!!!!

 We have noticed over the last few days he seems to be getting stiffer. He screams getting dressed and undressed. Asked physio at school to take a look, not sure what is going on but he is very unsettled because of this.

 Kai has also had the swine flu jab so we are hoping this will be his first Christmas he is well!!!  Would be great but this time of the year everyone seems to be ill!!!

 I am now 16 weeks pregnant and getting rather large!!! No doubt another big baby on its way!!!

 Have my 20 week scan on 4^th Jan so will let you all know how that goes.  Will be having C section so will find out the date at my 36 week check up!

  Mon 18th Jan 2010, Happy New Year to you all

 Happy New Year to you all, hope you all had a great Christmas and New Year.

 Another year been and gone, hard to believe Kai will be 4 this year!!! We had an ill free Christmas so we were very pleased!! He had a cough and still does but that is nothing compared to previous years.

 Kai loved his presents, you can see the difference each year with his awareness of what is going on around him. Still hard as he can not open presents on his own, would be lovely to see him sitting on his own. maybe next year......

 So far this year we are trying to obtain a seat for Kai in the shower. We do not have a bath so trying to hold him in the shower is soooooo dangerous as he goes mental!!! The OT has been around to asses the house for the future, quite scary to think how will we cope in a few year's times???

 Today he attended the splint clinic at school. He will have to wear splints going to bed and then during the day on his hands as he tends to push buttons with his arms all twisted. Also we have exercises to do on his arms to stretch them out. Kai is happy as long as you don't upset him!! So trying to stretch his arms is a challenge!! So now we have to do these 3 times a day!! That is going to be fun to do!!!

 We have an appointment on Thurs 21^st to look at his pushchair.  It doesn't seem to be very comfortable for him and he is so strong now he can near enough stand up when in the pushchair. Which means he is pushing on the chair which pushes it too far back!! Also the zip has broken already on the jacket attached, not very safe!! 

Taking him out and is a nightmare also, fine as long as the pushchair is moving, as soon as you stop he screams until you get him out!!! Also won't feed in it, so makes having a day out too stressful.

 Feeling like I have a life of appointments with him and me attending the hospital for this baby at the moment.

 We have had a our 20 week scan and all ok with baby, we didn't find out the sex so will be a surprise for us all!!! 

 Kai started back at CPPC Ltd last Friday. He had a month off over xmas so was worried how he would cope. But Magda was very impressed with him. He didn't kick off as much as we thought and was doing very well with his sitting.

 Also weighed Kai on Sat and he is now 13.1kg!!! This is amazing as we struggled for so long to get over the 11kg mark, so happy I stuck by my guns and carried on oral feeding, all that hard work is paying off, at last!!!   Kai still likes to make a fuss when eating, usually moaning the whole way through, but not sure this is habit or is he uncomfortable eating?? Speech Therapist is involved so will see what the outcome of that is.

 Scope has been a good place for me to read other peoples stories or ask for help.

 Today I found this message from a mum:-

 "hi,thanks to those who replied to my original question, unfortunately my daughter has got a rare brain disease called metachromatic leukodystrophy.she's dying, and its devastated our whole family, we found out just before xmas, i wrote on here in the first place as she was originally diagnosed with cerebral palsy and i was unsure as to why she was getting so bad,cerebral palsy would have been a blessing for my daughter but now she has got something with is slowly taking her abilities away from her piece by piece.she may not last another year.
I just want to say to all those of you who have children with cerebral palsy and other disabilities to make the most of every moment you have with your children,to treasure each laugh and smile, i no it sounds dreary, but you never no what lurks around the corner, just like i didn't"

 After reading this, I felt thankful for my life and for Kai.  All the times I moan about his disability I will think about this family, life is so cruel and scary for us all!! 

 Thurs 18^th March 2010, another rough time for us!

Hi to you all,

 Well we have had a tough month unfortunately.  Everything was going along nicely when our worse nightmare happened.

 On the 9^th Feb, I went into Kais room about 6am to find he had been sick in his bed.  So when I lifted him he was still being sick and as white as a sheet!!

 He was not responding to us. Luckily for me Dan was still at home so he called for an ambulance. There were there within in minutes, one good thing about living so close to the hospital.

 Kais eyes were looking to the right and we just couldn't get anything out of him.  He was taken into the ambulance and they checked his stats which were down to 80%.  Then they blue lighted Dan and Kai to hospital, that is when we knew it was bad.

 I have never been so scared in my life, the thought of losing my little boy.  Kai was taken straight into resuscitation and given a drug to stop the fit which we realised he was having.

 He wasn't shaking or anything just not responding.  Dan was then holding his hand and it started to twitch slightly.

 We had to then wait another 10 mins for them to give another dose as the first one was not working. We were then pulled aside to be told he may need to have a tube put down as this drug can stop him breathing.

 This is when it all got to much for me and I felt I was going to pass out!! All we needed.

 It was just all too much. I kept thinking, why didn't I go into his room earlier, what if I had gone in there later, just so much goes through your mind.

 We have been through bad times with Kai but this is the worse time so far and we really thought we were going to lose him. I have never felt so sick to my stomach just wanting my little boy back.

 Kai coped well with the drug and didn't need any help with breathing, which was such a relief to hear.

 Luckily for us, Kai spent a night in hospital and was let home the next day.  But he still didn't seem right.

 So just as we were getting back to normal, the following week, he was up being sick in the night and I thought, oh my god here we go again!!  So I sat up all night watching him in my arms.

 He was sick for a few days, so was I.  I think he had got a bug but this put him back even further.

 So on the 25^th Feb I managed to get an appointment with his consultant as he just didn't seem right.  He has lost his head control and was so floppy. Very quite as well.

 As soon as he seen him he agreed he wasn't right and admitted him into hospital.  It took 3 doctors to try and get a drip into his arm or leg with no success!!  So at 10pm his consultant had to come back to do the job right!!!

 He was put on a drip overnight  as he was dehydrated and blood tests were done. All came back clear the next day, but they decided to keep him in another night just to observe.

 So then we came home, and I have to say it is only now he is getting back to normal!!

 The fit completely took it out of Kai.  This is the longest it had ever taken him to get back to his normal self, plus he has lost a lot of weight, same old story!!!

 So now we are back to physio with him and full calorie diet!! He has started to eat really well so hoping he is going to keep that up and the weight goes back on.

 After the fit we moved him into our room, and he is still with us. We are both so frightened of it happening again as us not being there with him.

 The hospital are going to send him for an EEG and we were given a drug incase he has a fit at home for us to give him.

 But it is like a bomb waiting to go off!! No ones know when it will happen, if it will!!  It could be a one of thing or it could happen again.

 It has been so a worrying time for us all.  I hardly slept for a month, kept getting up checking he is breathing.  The worry of sleeping through when Kai needed us.

 We feel a bit more relaxed now Kai is getting back to his cheeky self.

 Just shows with children like Kai anything can happen!!!

 I have 9 weeks to go before Kais brother arrives, Dan got his way and we found out what sex we were having, so we are all over the moon.

 So our lives are going to change again, for the better this time!!

 There is an article in the Sunshine Magazine this month on Kai, which Charlotte kindly arranged for us.

 If you get a chance take a long, such a good story!

 Wed 14th July 2010

I am back at last, I have to appologise to everyone who takes the time to read the blog, for not updating sooner. 

Well things are very different for us now since I last wrote, Kai is now the proud big brother of Louie Phillips. He was born on the 13th May, so already 9 weeks old!!!!

What an amazing experience we had with Louie, Queen Charlotte Hospital were fantastic looking after us, and make the C section very relaxing for me!! 

We have waited so long to have the normality of another baby, and I have to say it has been very emotional for me. It has brought back all the memories of how horrific Kais birth and first year was. It made me realise how much we missed out on with Kai due to his condition.

But I know the future will be easier as Kai is starting to enjoy his brother. He loves watching him kick about and finds it funny when he screams for his bottle, which seems to be every 2 hours at the moment, yes a very hungry boy!!!!

Kai has been doing so well, but got ill 2 weeks ago. Another viral infection but has taken a lot out of him. He has lost a lot of weight again, and head control very floopy!!!!

So now we are going through the whole thing again, fighting to get him to eat!! He is screaming through most meals, but today has been a good day!!!

Kai went to Great Ormond street a week ago to see consultants about his feeding. They asked a lot of questions and watched him eat and drink. He has been referred for a videoflosopy which will be end of Sept. They are concerned about his weight and feeding, will let you know the outcome!! Not looking forward to it, i have to say!!

We are taking both boys to Spain for their holiday so will let you all know how that goes!!
 
Kai is now the owner of a Tomcat Bike which he loves. He is so proud on it and loves us all watching him. Can only go on for a short while but hoping to take to Spain so he can use everyday.
 
Kai will start 3 full days at Grangewood in Sept, big step for us all, but think he is going to benefit so much and he needs it. He will then attend his private physio at CPPC Ltd 2 days a week. See how that helps him.

Right have to cut this short as Louie has woke us screaming and he doesn't like to wait, no patience!!!

 

 Tuesday 14th Sept 2010

Hi to you all,

Firstly I have to say a big Thank you to Charlotte for arranging yet again another fantastic event at Grangewood School.

She has the help of Nicky again and her crew who take so much of their personal time to help with our events.  Nicky being heavly pregrant was an extra struggle for her!!

Having these events makes me realise how special Kai is to everyone who meets him.  We are in and dated with friends coming to them and friends of friends!!!  All of Charlottes family were there to help with the event.

We are very fortune to have the supportive family and all our freinds around us.  

I have heard some many times Kai was given to us for a reason, hard to accept and cope with.

But after Saturday,I sat there and thought Kai has brought our families so much closer together and our friends.

Charlotte has found something she enjoys doing, fund raising, I know it is hard work for her but she does a brilliant job and through her doing this she has made many new friends, and will be involved with Grangewood in the future.

So having Kai has brought so many good things to our lives, that wouldn't of happen had he been born like he should of have.

Here is a poem I have read so many times, so thought I would share with you,

  

A TRIP TO HOLLAND

 

 I am often asked to describe the experience of raising a child with a disability – to