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Noah and Gracie’s Diary / Entry 3

Once again I’m must apologise for taking so long to give a proper update to everyone, such a lot has happened over the last couple of months we have been so busy with appointments and other commitments that time just moves on. Well the last time I said Noah was just getting ready to head off to Lapland to meet Santa, he had a great time it was a magical experience for him he was so excited to tell of all he got up on the trip such as sledge riding, husky dog riding and of course meeting the Big man himself, we just want to say a big thank you to Jack Rodgers and his Team at Northern Ireland Children to Lapland Trust for making this day so special.

At the beginning of a new year most people begin to look ahead and are full of hope for the new year, we are no different we have our hope and prayers for 2012 and at the start we were preparing ourselves for a busy, challenging year ahead, we both had a sense of feeling this year was going to be hard and big decisions would need to be made, and sure enough this was confirmed when Noah had his big assessment where all the health care professionals get together and review his progress, we were told that his feet were in a bad condition and his arches had dropped this was not news to us we had observed it for some time but struggled to know what to do to help, the reason for the deterioration is because of the way he walks combined with him growing, because of his underlying neurological disorder Noah has a very unsteady gait and because of this the muscles in his lower limbs are considerably weaker than what they should be, this has had a knock on effect and as result would often wake up at night in a lot of pain because of over compensation just trying to keep his balance.

Initially the doctors considered Botox injections to try and loosen up his muscles but after consulting orthopaedics it was decided that, that would be the last resort and should try and correct this mechanically, it was considered that the Botox isn’t guaranteed to work and could weaken his legs further , the solution now is to fit Noah with splints to try and keep his legs and feet at a 90 degree angle, this is something we are very worried about because we do not know how Noah will cope wearing the splints they may make him more unsteady as he will be less flexible he uses his flexibility to keep himself balanced.

Dr Van der Knaap has asked for the kids to have MRI scans done again, this was a bit of a surprise because of the last time we meet her she said it would be a couple of years before she would want this carried out again, the plan was to get the scans taken here in Belfast and send them over but we felt we would prefer to go to Holland and have them done by Dr Van der knaap as she is the leading expert on VWM it is better to go straight through her, it is planned that we would go over in July of this year though no date has been confirmed as yet, this will be a very difficult trip because we will be again looking at the scans and talking about the progression, but we are believing God that the progression has not got worse and we will get a good report.

Day to Day Noah and Gracie are continuing to do well, however we have noticed that Noah gets tired very easy, we believe this to be that he is working so hard just to keep up, he is continuing to go to mainstream school but that is something we are reviewing at present with his physical difficulties we have to think seriously on what’s best for him, he loves his school but it can be a long day for him and we need to manage him carefully. Gracie is doing really well she is growing so fast and developing as she should there have been no out word symptoms of VWM yet and we thank God for that, she is a real blessing and joy to be around as is Noah.

We as a family continue to be amazed at how the Lord has provided for us as we go through this journey our every need has been meet and people have been brought into our lives and have been a tremendous source of comfort and support to us. A Verse that has been very much in are thoughts at present is Psalm 27 'I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living.' Psalm 27:13NKJV
Noah and Gracie’s Diary / Entry 2

Noah turned 5 on the 31st October, he had a great birthday and enjoyed hanging out with his chums at Zoo Park, it’s hard to believe wee Noah is now 5 years old such a lot has happened in those few years but we are so blessed to have him and his little sister Gracie, it’s great to see them so happy, obviously there are physical signs of Noah’s mobility problems it saddens us sometimes as his parents to watch him and we are becoming increasingly aware that there are just certain things that he is not able to do that his peers can do without any trouble.

Noah has now started the Anchor boys section of the Boys Brigade, he loves going and joining in with the activities, we have been really fortunate to have good friends around us that have went out of their way to make sure Noah can attend BB and making sure someone is always on hand to assist him.

The excitement is building in our house with the Christmas holiday season just around the corner, Noah has already expressed his wish list to Santa while Gracie is just buzzing about and pointing at every Santa Claus that she sees, we are really looking forward to spending some quality time with them, to add to the excitement Noah and Greg are going on a special trip to Lapland to visit the man himself all thanks to the Northern Ireland’s Children To Lapland Trust http://www.niclt.org the trust have been brilliant and Noah was nominated to go along on the trip which promises to be an adventure of a lifetime, we will update the gallery with lots of pictures on our return.

Thanks again to all the people who have supported us and who continue to hold us up in prayer it is greatly needed and appreciated.

We must continually give thanks to God, who sustains us daily through the valley, without Gods grace and love in our lives we know that this walk would be almost too much to bear. We continue to stand on God’s promises!

Proverbs 3 v 5&6

Trust in the Lord with all your heart, lean not on your own understanding;

In all your ways acknowledge him, and he shall direct your paths.
Noah and Gracie’s Diary / Entry 1

Hello everyone it’s been a long time from I sat down to give a proper update on Noah and Gracie, to be honest it’s not really the easiest thing to do, but so many people are continually asking about them that I felt it was only fair. Greg and I would first like to say a massive thank you to all the people who have been so supportive to our wee family, we really don’t know how we could get by sometimes without the support and love of our family and friends, we have been so blessed and amazed at how generous people have been especially those people who didn’t know us but were touched by Noah and Gracie and just wanted to help, so thank you to all who fundraised. We would also like to say a huge thank you to all those who hold us up in prayer without you guys interceding on our behalf I know it would be unbearable to get through this journey, you will have no idea how much this means to us.

Just to give you an idea of how things have been, on the last update we had only recently discovered that Noah had Vanishing White Matter Disease a form of Leukodystrophy; we were also waiting to find out if Gracie also had the disease. On the 18th of October 2010 we were told Gracie also had the same disease, to say we were devastated all over again would be an understatement. We had already arranged to go to Holland and meet with Dr M Van Der Knaap a specialist who helped discover the defective gene that causes the disease. We went over with the children in November 2010 so she could assess Noah and Gracie; we wanted to find out as much as we could about this horrible disease, as far as we know Noah and Gracie are still the only two children in Northern Ireland with this particularly type of Leukodsytrophy.

I suppose we also were holding out for some hope that Dr Van Der Knaap would tell us of some cure or give us renewed hope, Dr Van Der Knaap is a lovely lady and one of the world’s leading experts in this disease, she is dedicated to finding a cure, to vanishing white matter disease and has recently opened a research centre in the hospital in Amsterdam.

So it is now two years to the month that we first got the diagnosis of Noah and one year to the month that we got Gracie’s diagnosis, you might be surprised to hear that this year has been a year of real blessing, we still live with the doubts and fears of this disease but through it all we can honestly say our home is a home of love and laughter, the kids are an inspiration to us and their energy and love for life keep us going.

Noah started primary one this September, as any parent would tell you, your child’s first day at school is always an anxious day and this was the case for us, even more so as we have been worried about how he will cope, will he be safe, will he fit in with the other kids , will he become more aware that he is just not as able as his peers, these thoughts have been going through our minds constantly in the build up to him starting “Big School” I suppose we are still to a degree worrying about these things but all the teachers and staff at Woodburn Primary have been fantastic with us, they have gone out of their way to make the school a safe environment for Noah and have been very attentive and helpful, Noah loves his new school and has made lots of new friends he is learning something new every day and loves to come home and tell us all about it, Noah is now in school for 5 hours a day which is a big change for him so we are keeping a close eye to see how he copes hopefully it won’t be too much for him, we have noticed a pattern of the more Noah pushes himself during the day for example, if he has been running about a lot without rest periods that it’s not unusual for him to have a more disrupted sleep that night and complain of pains in his legs, he has been having some leg pain at night recently so we really need to manage him carefully.

Gracie has been doing really well so far, she will be 2 years old this December and thank God we have seen no physical sign of this disease yet in her, she is so much fun and is developing her own wee character, she just loves to hang out with Noah but like any brother and sister they can have their moments to.

Dr Van Der Knaap spoke to us last November on the importance of protection, protection against colds and fevers and against falls and bumps to the head etc, the kids and us now get the flu vaccination as standard and Noah and Gracie are on a low maintenance antibiotic over the winter months, we feel this really helped them last year as they never really picked up any illness.

One thing we need to settle on is our house situation, we need to make it a safe place for them, Noah has real problems now navigating the stairs, our house has two bedrooms upstairs and one downstairs, with Noah’s disrupted sleeping pattern it was becoming unsafe to have him upstairs so we have moved him down, with Noah’s vulnerability at night I now sleep alongside him, this brings its own stresses. Our house is on the market as we feel to make our home life as comfortable as possible we need a bungalow were we can allow Noah to stay in his own room without the worry of stairs.

Our lives are a bit like being on a rollercoaster at present, sometimes were up and sometime down , but I can honestly say in general more up than down, we still very much need your prayers firstly for the health and healing of Noah and Gracie, for the practical everyday challenges that we face and for our home situation that we get our house sold quickly and find a home to suit our needs so that we can direct our energy to the situation we are with worrying about keeping the kids safe around the house.

Lastly we would like to thank God for keeping and sustaining us all this past year we have been truly blessed by the people that have been brought into our lives and the support they have given us, we live with a desperate dependence on Him and trust that our kids lives are in the palm of his hand.

Jeremiah 29:11 - 'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'
Welcome To Our New Website

Welcome to our new website, be sure to check out all of our new features! Check back to the blog (currently viewing) at anytime to find out the latest information on Noah and Gracie, fundraising events, upcoming events and just general information. Also be sure to check out our updated information throughout the website, our new gallery packed with photographs!, and our new contact form were you can fill out a few boxs if you would like to share anything with us, once filled in it will then send a private e-mail to us on our email address associated with this website. Alternatively e-mail gregcoates@noahandgraciecoates.co.uk to get in touch on the same e-mail address. Website designed, developed and hosted by Luke Daly. Think he done a good job? Contact him via e-mail on: lukedaly93@gmail.com or via phone on: 07756386491.
Thank You Simply Class Fitness

Just a quick word of thanks to everyone at Simply Class Fitness. Thank you and well done to everyone who took part in the marathon, your support is greatly appreciated, so rest your bones and glow in the warmth of our thanks. When the marathon is complete you will be able to read the full story on our fundraising page, and view the pictures in our gallery.
Thank You Humpty Dumpty Playschool

I would just like to say thank you to everyone who supported the children and staff Humpty Dumpty Playschool in our recent fun activity days, we have some photographs of Noah doing his part in our gallery... Read the full story on our fundraising page.