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Sorry it’s been so long since our last update!!
Keiran is doing great……..So much so that we are in the process of returning in the next few months!!
Nothing has improved immensley since we’ve been home BUT we’ve noticed little things. The letter size has reduced by half the size & he can recognise them in his left eye m(weaker eye) as well as his right eye. We are still noticing the difference with his nystagumus & as for his bowel problems; it’s as if there was never a problem in the first place!?!?! I would love to go back to his primary school & prove to them that it was part of his condition. It is not stated anywhere that toilerty problems are linked with SOD but speak to other parents who have a child with the condition & it’s apparent that most of the kids suffer with a form of bowel problems………………….wish I knew that 8 yrs ago……Hind site is an amazing thing. Feeling alone back then; I would love to meet other families who have older children!!
On a brighter note, we are looking to retunr for a 2nd course of treatment in August this year. I’m hoping it will be a better experience & that conditions will be different this time round. Keiran is eager & excited with the hope that he will have more achievments this time and with his positive fibes I will soldier through. It will only be Keiran & I on this journey this time round. I’m just hoping he won’t be tooooooooooo bored with only me as his company. I’m sure that we will find many friends along the way & will find reassurance with those around us.
Will post more when we know dates etc about returning. Please wish us much luck.
Love Hayley & Keiran
xx
May 14th, 2010
Sorry it’s been so long since our last post. I really don’t know where the time has gone!! We’ve been home over a month now & we are only just getting back to some kind of normality. I think it don’t help with arriving home so close to Christmas & then having to go shopping for it. The snow really didn’t help the situation either lol!
So far there are no more developments or improvements with Keiran’s vision. We’ve let him have some time off (for good behariour lol) to just enjoy the rest from being pulled and poked about. This week we are continuing to try introduce more letters to him. I know with his determination he will do really well. Keiran’s nystagmus still appears to have calmed right down and his eyes are not flickering no where near as much as they were before. Again with his bowel problems; this seems to have cleared up completely. All in all, he’s doing fantastic!!!
Keiran made a new year’s resolution this year to ‘try and be able to write his name’! So by hook or krook I know he will achieve this.
We are due to see his consultant over the coming months & are intrigued as to what they will say.
Happy New Year to everyone and I will post again soon. We are missing all the peeps that we met out in Qingdao & hope that they are all in good health & we wish them all the best.
Love Hayley & Keiran xx
www.help-keiran-to-see.com
January 13th, 2010
After over 21hours of travelling on Tuesday, we touched down at Heathrow arirport & were met by the biggest squeeziest hugs from Georgia & Maddie, Mum & Keith. Tears of joy of being back together!!
Mum & Keith done us proud by decorating the house with ‘Welcome Home’ banners, balloons, flowers & chocolates.
We are going to be spending the next 2 weeks focusing on christmas & some quality family time……….. so my apologies in advance for not updating the blog or Keiran’s website. I will post some photo’s on the website in the New Year.
Once again, thank you for everyone’s support & best wishes. I hope you all have a lovely christmas & our best wishes for the new year.
xxx
December 10th, 2009
Yesterday was a Free Day & we ventured out to the Open Market. Not an experience I would want to do again! It’s very crowded & motorbikes & cars drive through; directly at you!!! After about an hour we’d had enough & came back to the hospital. Which was rather lucky as Keiran had to go for an ECG (which was not on the schedule as it was a free day).
Today was a ‘free day’ and we booked Charlie (company driver) to take us, Michelle, Chris, Amy & Hannah downtown to Underwater World & May 4th Square. It was lovely to be able to spend one of our last day’s with an amazing family. When I look at Amy; she brings a smile to my face & Keiran loves to spend time with her – as they Burp & laugh at each other! We are going to miss them immensly BUT we are lucky that they live in Essex & will be able to spend time with them again soon. They can’t get rid of us that easily LOL! Thanks guys for a very enjoyable day………..
Keiran enjoyed watching the fish swim around as they swam passed him quickly in the tanks. The jellyfish were lit up red.
When we are home I will post some photo’s on his website………..I’ve not had access to his webpage since we’ve been in China. After Underwater World, we went to McDonald’s & then down to May 4th Square & Keiran enjoyed listening to very small waves rippling & crashing on the shore. We looked over the bay where the 2008 Olympic Sailing was held.
We came back to the Hospital & received our schedule for the week LOL – Only 1 day to go!!!!! Keiran has got therapy with Forest tomorrow & a visit from Dr Apple & that’s it…………….we have been given parole & we leave early Tuesday morning!!!! Our journey in China is coming to an end. It has been like a roller coaster BUT we’ve met some fantastic people & some amazing children………..it will be sad to say goodbye but we wish every single one of them Good Luck with their journeys.
Keiran has learnt another 2 x letters – S & C!! Although, I’m not sure if I mentioned that these are about 4-5″ in height. Not bad in 3-4 days. My fingers & toes are crossed that things keep developing.
I’ve managed to start the packing this evening. Knowing me I’ll be rushing around like a headless chicken tomorrow flapping that I’ll run out of time.
Time for bed for me now – Will try & post again tomorrow before we leave.
xxx
December 6th, 2009
Well today was Keiran’s final treatment which he received via Lumbar. I am pleased to say that all went well again and he was just fantastic as always. Although, Keith & I still felt the same anxiety as the first Lumbar he received; 20 minutes is a long time behind a closed door. The nurses think we are crazy as we wait nervously behind the closed door instead of the waiting area. He got a bit cranky for the last hour or so of laying down; but who can blame him; 6 hours is a long time – especially as Keiran doesn’t like sitting for a long period of time!
We received some good news yesterday. Dr Apple came to see us last nite as she was so excited that she couldn’t wait until this morning to tell us. Keiran’s VEP test has improved from the initial test that was done when we first arrived :O) His readings on the test picked up that his optic nerves were reacting & responding much better; basically means that over the next 3-6 months that we should be able to see improvements with his vision!!! To add to this…….Dr Apple was doing a screening test with him yesterday morning (where Keiran counts fingers & they measure the distance that he can see them) AND he can count fingers at 2-3 inches in front of his left eye!!!! Something that he could not do before………he only could distinquish light in his left!!!! It’s amazing news!!! We’ve also managed to teach Keiran to read the letters A,B,O,X (4inches in height). The Dr’s here have urged us to try and teach the letters to Keiran and get him to try and draw what he see’s. This is going to be a challenge in itself for him as well as us BUT so very promising!!
Well that’s our news from China……………………… I have been longing to say that improvements have been achieved BUT it’s only been in the past few days that we’ve noticed them & had it confirmed. Although these are very small steps; we are elated to know that these can keep growing. Keiran has done us so proud & I know he will continue to. He hasn’t noticed anything himself but was rather pleased when he realised he was counting fingers with his left eye (as he says ‘my weak eye’). Let’s just keep our fingers crossed that the immature stemcells will keep growing and work magic 
Keiran is having blood tests in the morning and then we’ve got a ‘free day tomorrow & sunday’. We are counting down the days until we are home – 4 days to go!!
Missing you all & can’t wait to get home.
Love Hayley xxx
December 4th, 2009
Today Keiran had his morning therapies with Forest; Electric Wave Therapy, Accupuncture & Ear Point. Keiran sat on the bed & played dominoes with Keith as I still don’t want to get too close to him for too long (which is killing me).
The Dr visited in the morning and explained that we would be going downtown to the Eye Hospital around 12.30pm for another VEP test. Cliff (a company driver) took us & another family into downtown. This gave us a good opportunity to speak with Shane & his parents. They arrived in Qingdao 3 days ago & have only just recovered from their flights. Shane sounds like an amazing man…..He has come for treatment for his optic nerves too. He suffered with a heartattack 2 yrs ago & as a result of a needle being injected in his arm it caused a bleed for 11hours; his optic nerves damaged & lost his sight & has limited use of his right arm. We will chat to him some more I’m sure.
After 2 hours of waiting in the hospital (which was not pleasant one little bit) Keiran went in to have the test. Once again, it was the same drill………..he’s got a bald patch on the back of his head again – so I’ll really need to get his hair cut when he gets home! We will get the results of the test tomorrow.
Came back to the hospital & got ready to go over to the shopping mall with Lucy (translator who’s been really nice to us) as she’d mentioned about going on the rollercoaster with Keiran. Well, what can I say………..what a whimp she is!!!! Bless her cotton socks she didn’t want to go on anything, she said that it makes her sick. After a few minutes of trying to convince Lucy, she was not having any of it. Although, I think she enjoyed watching Keiran & I being thrown around of them. We all met up with Forest at a Korean restaurant. It was a lovely meal with great company! Lucy & Forest told us their chinese names & meanings. Their names are so pretty & have such fantastic meaning. Forest explained that he chose his name because of the film ‘Forest Gump’ which we laughed & explained that that is what we automatically thought of.
Tomorrow is Keiran’s last treatment via Lumbar. I’m still as nervous as the first one BUT knowing this is the last one makes me feel a little better.
Love to all
xxxxxx
December 4th, 2009
How we managed to get up this morning I have no idea. A group of us went out for dinner at the Holiday Inn last nite to celebrate Brandy, Chad & Spencer’s last nite on the 8th Floor. When we got back to the hospital we sat in the common area chatting and having a laugh (it was one of the best days we’ve had since being in China). Before I knew it, it was 1.30am & time for me to get in my pit.
It was lovely to be able to talk to Matthew’s mum Bernadette, Cathy & Ryan (Mallory’s parents), Brandy & Chad (Spencer’s parents) & Chris & Michelle (Amy’s Parents). These children are so wonderful and it’s heartwrenching to listen to the stories of what they’ve been through BUT we will continue with our fight for our children to have the best life possible!!
It was another sad morning as we watched Brandy, Chad, Spencer, Mildred & Lulu set off for the airport. It sure will be quiet around this place now. We will miss those guys but wish them all the success in the world. Will def stay in contact with them!! Thank you for some sanity over the past few weeks LOL! We are now the longest serving family on the block & will be the next to leave……
Keiran was great again today. He did ask for numbing cream to be applied to his hand before the nurses were due to come and insert his canula. His strength through all his treatments & therapies has been outstanding!!! His canula was fitted and he was very relieved that it went in first time. For some reason my cold has hit me with a vengenace & I was unable to go upto the IV room with him at 2.30pm when he was receiving his stemcells. I had to watch Keith take him up and say goodbye to him at the stairs 
After a very long hour……..he strolls back into the room ‘Hi Mum; what you been doing?’ Bless him…….never mind ME I want to know about him LOL. Looks like his body is not having any bad reactions to the stemcells as he’s not suffered with any side effects from the 5x IV & 2x Lumbar. We have one more Lumbar scheduled for Friday & then the stemcell treatment is finished YEAHHH.
We are due to go Downtown to the Eye Hospital tomorrow for Keiran to have another VEP test. Dr Apple will then compare the new test against the one originally done when we first got here. Will post as soon as I get results :/
Just taken some Sudofed & it’s an early nite for me. Just hope Keiran & Keith don’t end up catching it.
Thanks guys & girls for all your support, without it this would not have been possible & with everyones kindness & generosity we’ve managed to give Keiran 8 treatments rather than the original 6. To you we are all so very grateful.
xxx
December 2nd, 2009
Keiran received his 6th treatment yesterday; which should have been his last one BUT we’ve booked an extra 2 which he will receive the rest of this week.
The nurses came to do his canula and unfortunately it was a case of 2nd time lucky. Bless him……….he didn’t moan & the nurses kept apologising & I feel that he must think he’s some kind of pin cushion!! At 1.30pm they took him upto the IV room but he only went up with Keith this time as I’ve come down with a cold & sore throat. It was horrible not being able to go up with him & even worse as I’m trying to keep my distance so he doesn’t end up catching anything. Keith was threatening to send me to a Hotel which I wasn’t having any of!!! I settled for a course of Accupuncture from Forest. I would highly recommend it to anyone who wants to fight off a cold!! Together with Sudofed, I’m feeling much better today.
Forest is such a kind, lovely man. He really treats Keiran as an individual & not just a patient. Keiran was not scheduled to have afternoon therapy yesterday BUT he came along after lunch and asked if Keiran would like to have his massage & fire cups. Of course Keiran jumped at the chance! I wish I could bring him home with me………
Keiran was in hysterics when he was receiving his massage; as a nurse came in and asked him ‘have you moved your stools?’ To which he replied ‘no! But I moved a table & 2 chairs’…..LOL……..the nurses & Dr’s don’t really get his humour but it really did tickle him for about 10minutes!!
Tomorrow (2nd Dec) Keiran will be getting his 7th treatment via IV. He’s still not overly happy with the fact of keeping his canula in overnight but he knows that as soon as he wakes up we grab a nurse & ask them to take it out.
Keiran started his advent calendar today; so we are well & truly on countdown now until our China journey comes to an end. We are soooo looking forward to coming home.
xxx
December 1st, 2009
Today was a ‘free day’ but it was rather cold; to say the least. So I was lucky enough to go downtown to the Jimo Market with a few of the other mum’s. After a rather freaky experience of being driven to the wrong part of town & then a drive to the airport we ended back at the hospital. I swear the taxi driver thought we were MUGS – oh dear; he messed with the wrong people LOL! There’s a story to be told when we come home LOL! We were very lucky to be rescued by Charlie (a very nice man who’s a driver from the hospital). We eventually ended up downtown.
Keiran & Keith stayed at the hospital and they enjoyed listening to Star Trek & Keith fell asleep. Which Keiran thought was highly funny as Keith was snoring.
We went to Pizza Hut this evening for dinner. We now have rather full tummies. I’ve really turned into a ‘ten ton tessa’ since being here…………There’s nothing to do but eat. I thought I’d possibly loose some weight with all the stress – wishful thinking!
We are now waiting to see if we he can chat to the girls before we turn in for the evening but Mum has told me that Kelly is having problems with her connection to the Internet due to some not very nice people cutting their cables
Tomorrow Keiran has his 6th treatment via IV. He really doesn’t mind the IV’s – which is a good job as he has extra this week.
Just over a week until we are home & I get to see my beautiful girls in person rather than an image on the computer. We are really looking forward to coming home & I hope the week will go quickly.
Thank you to everyone who’s been encouraging us………..without you guys it would have been much harder!!!
See you all soon
xxxx
November 29th, 2009
Keiran received his 5th lot of stemcells yesterday via IV. All went smoothly & he is doing just fine. No visit from the Dr today, but he had his usual therapies with Forest & I also managed to receive Accupuncture to try and help my back & shoulder pain……….I take my hat off to Keiran; although it was not painful, I struggled to lay still for half hour. It makes me wonder just how difficult he finds it lying flat for 6 hours after his Lumbar.
We managed to walk over to the Lotte Mart to get some groceries and a homemade chicken curry & rice went down a storm. I’m so sick & tired of having fried food or not knowing what you are actually buying
Keiran also enjoyed a walk out down to Century Park – although it was rather cold! He just hates being in the hospital all day! It’s great that he ventures out of the room a bit more now & will sit in the common area with us talking to other families that we’ve met. It was lovely to see Amy & Spencer up and about today as they’ve both been a little poorly BUT it was good to see that they are on the mend.
Keiran’s just gone to bed & I’m going to attempt the shower & then hit the sack too (hopefully it’ll be hot – but I’m not holding my breath).
We are now in single figures of days until we come home YEAH!! We have 9 days to go & then we’ll be home :O) wooo hoooo!!!
See you all soon. Miss Ya
xx
November 28th, 2009
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