Birmingham Children’s hospital.

So i’m off to Birmingham Children’s hospital tomorrow, to take Alfie to one of his yearly appointments for his condition. After seeing Alfies local dermatologist, who I really like, although Alfie seems scared of him as he had a massive unreasonable meltdown down when he saw Dr Bala and had to be taken back into the play room, I was told that Alfie needs a new sun cream as he seems to blister more when hes wearing the cream rather than without it. So after 2 years of the same sun cream it turns out that that could be the reason he’s blistering *sigh* it just feels like yet another set back.

I’ve already been told that I will probably never find out what’s wrong with Alfie, they say Rothmund Thomson Syndrome but that hasn’t even been properly confirmed. He’s had x-rays, Skin samples, Ultrasounds, that many blood tests that I’ve lost count, he has to have his eyes tested for cataracts, again.. it’s all very frustrating to know after all of that, after Alfie being pinned to the bed by his arms and legs to have blood taken from the heals of his feet but there not being enough blood so they have to tightly squeeze his feet so the blood flows, all the time he’s screaming and tears are flowing from his face, me having to hold him tightly while he has a chunk of skin cut from his forearm, all of this, and over 50 dermatologists have seen him, I’ve been in touch with a hospital in America who have experience in his condition and his toes nail falling off and splitting, his skin is a constant rash, his eyes water from a little bit of light and MORE horrible experiences that I can’t even remember and still no one knows what is wrong with him.

All of this has happened in the short space of his 2 year life. It’s very upsetting and tomorrow at his appointment i’m hoping for some answers but all I ever hear is “it’s all trial and error” surely someone must know what’s wrong?

Anyway, here’s a short insight to my week.

 

Peace & Quiet.

I’m currently enjoying the house to myself! Phil & Miley have gone to town & Alfie is in playschool. So bacon baps, sprite & the “Syfy” channel are keeping me entertained.

I’ve been worried sick since I dropped Alfie off at playschool, as they called me to the side to see if Alfie was allowed to do body painting, I said yes as I didn’t want him to miss out, but now i’m worried with him having Rothmund Thomson Syndrome, if his skin will react badly to the ingredients in the paint as hes not even allowed children’s bubble bath, or soaps he has to have everything prescribed from the Dr. I’m just hoping his skin will be fine & he enjoys his painting!

Also really proud of my little Miley as shes only 12 weeks old & she’s sleeping right through the night & has been all week! along with her little giggles & smiles shes the perfect little girl.

I’m also really ahead with my Christmas shopping this year! After a rude remark about Christmas, it got me worried & I started my Christmas shopping, spending near £400 already, me & Phil have bought Alfie & Miley loads & i’m really excited for Christmas now, however unlike every other Christmas, I wont be spending Christmas eve at my parents house as there wont be room because my brother lives there & my sister & her two children have just moved back in, so there wont be room! We are however going to go up for Christmas dinner, so i’m looking forward to that!

I’m also really looking forward to the 6th of October as i’m going to see sinister at the cinema, then going for dinner & having a few drinks, it’s been a while since me & Phil have really done anything just the two of us, so my mum said she’d baby sit Miley over night & Alfies with his dad anyway, so it’s all good!

I’ve also redecorated my living room, bought a new sofa & new curtains & spent a few hours in Dunelms & I’m incredibly pleased with my handy-work!

Anyway i’m going to go as I’m watching Fact or Faked: Paranormal Files & I’m missing most of it due to blogging!

Oh Em Gee Bruv.

I havent blogged in a while, for good reason! I’ve been severely distracted by my new boyfriend Philip! I’ve known him for 9 years and even though that’s a long time, we’d never met. We’d talk on MSN, webcam, Bebo before it went rubbish, Facebook, texts and phone calls. We spoke pretty much constantly throughout the 9 years, a few times we’d fall out, mostly his fault, but we’d always be friends again.

We became a lot closer this last year, every time Ben would shout at me or make me feel down, i’d confide in Phil and he’d cheer me up, the day Ben went to hit me, I phoned Phil for advice. I didn’t think we’d ever really meet up, we’re nothing alike and I thought he’d annoy the hell out of me, but after talking to his Dad on the phone, it became clear that we were actually going to meet.

On the 3rd of September he travelled 11ish hours to my house, part by car with his brother, then a train for the rest of the journey, followed by a taxi. I was out drinking with Ceirwen and Matt when I got the text saying he was at the train station, we’d left the bar and popped into McDonald’s to get Ceirwen a fanta, so I left them there and walked to the station. It was half 11 at night and there was a fight outside a pub, I quickly shuffled along avoiding everyone. I seemed to be waiting forever outside the station, some randomers said “hi” to me, I waved and then I turned and to my left, Philip was standing there. We both didn’t know what to say “hi i’m Leanna” seemed appropriate, it wasnt exciting… it seemed like I was just meeting a friend I saw daily, it just felt normal. He was only meant to stay 4 days, it’s been 11.

He seems to have fit perfectly into my life, my family love him and he tries really hard with Alfie and Alfie genuinely loves him being here, he seems to listen to Phil more than me. He even helps me with Alfie’s every day needs, dressing him, changing his nappy, cooking and he gets up in the night with him too. He’s so playful aswell, we spent an hour in a toy shop while he picked what toys he wanted…he settled with a bouncy ball, a cow that flips,  growing fish in a tank, a fish key ring and a weird hand face thing, I insisted that he was wasting his money, but it made me giggle.

He’s taken me out for dates, we’ve been out every day since he’s been here, we’ve bought each other gifts and we just seem to connect. He’s such a weirdo in every way possible that I don’t think we’ll ever get bored with each other.

He was looking at me yesterday, I turned and said “what?” he replied “Are we soul mates?” So I said “what?” his eyes filled up and he replied “I think you could be my soul mate” it was so cheesy and normally i’d burst out laughing, but I think he really meant it. He’s so different from the person I talked to online, he was cocky, arrogant vain and damn right annoying! Although he is still annoying, he’s also very sensitive, emotional and he has such a big heart. He even offered to come to Alfie’s hospital appointment with me, because Ben didn’t want to go and he knew I’d be upset going alone.

I just wish he didn’t have to go home.

I live my life in chains, got my hands in chains.

Well this past week has been amazing & awful. I had two amazingly fun nights out with Kerri & her friend Rachel, learnt some life lessons from it, guys who look rapey and have girlfriends are always a no go and guys who claim they’d sleep with themselves if they could, also a no go, Oh, & guys who take cocaine are genuinely as rubbish as you could imagine, regardless of how they look. I will miss Kerri now she’s gone & I really liked Rachel too. I also realised that fake tan isn’t quite for me, as much as I liked it at the time, my body is way too pale to suit it on a daily basis.

I moved back in with my parents yesterday, I figured its time to properly move on, I just missed my house, my stuff and my dog too much.

Alfie’s appointment in Birmingham was yesterday, I feel slightly more positive, but they have no idea whats wrong with him. They think RTS but there are things he has that people with RTS don’t normally have. They took more blood, photos and tests, costing them £1000. At the moment, he’s allowed out, but not as much as a regular child would, the blinds can be opened and he can go swimming, all with the special creams we have been given.

Being in Birmingham children’s hospital has completely put me off wanting another baby, which I have wanted for a long time. We got there, had to take a raffle ticket and wait for our number to be called, to then go “check in” and wait even more. It went quick but I didn’t half feel like I was in Argos.The whole place was full of sick children, babies with cancer, a little boy with a hole in his throat, it was upsetting and genuinely not what I needed to see, so upsetting that my mum at one point burst out crying. So I don’t see me ever wanting more children.

The whole experience made me realise, I need to stop focusing on Alfie’s condition and just focus on Alfie, as a little boy, as my little boy. I’m going now, to play with him in the garden. 🙂

febreze

Todays been boring, I baby sat my niece last night and today she went home, which left me to sort out Alfie’s old clothes, lots of clothes that had never been worn, I wasted a lot of money.

Also my dog Obi stinks, I’d love to febreze him, seriously, I thought about it, just a little spray of febreze carribian behind his ears, he can’t lick there and he’d smell lovely.

I’m dreading monday, I have a meeting in Birmingham to find out how serious Alfie’s condition is, when people ask me about it, they almost always say “that’s awful” or “im sorry” which I reply “its fine, it’s not as bad as it sounds” but the reality of it is, it is as bad as it sounds.

Peace?

After applying Alfie’s sunscreen on for the 2nd time today, we’re inside but he has to wear it anyway so his skin doesnt blister, I tickled his legs and he giggled his face lit up with happiness. He’s so innocent, his biggest worry would be how to get all of his dinner in his mouth at once, or how quick he can leave the room without me chasing him. So how as adults, even young children, do we become so hateful? so vindictive, vicious, jealous, spiteful, two-faced and every other selfish emotion. Oh I don’t know.

Now this is the story all about how My life got flipped, turned upside down..

I’ve been a bit lazy with my blogging recently, my whole life has changed in every way possible the last two months, some for the better, other worse, regardless I’m happy at the moment. I’m hoping to be moving house soon, which excites me and kinda disappoints me, I love my house, my garden even my sheds! aha, but if I don’t move, I have to get rid of my dog Obi & as much as he bugs me, I’d miss him.

It was confirmed yesterday that Alfie has Rothmund-Thomson Syndrome and as heartbreaking as that is, he’s so happy that I can’t even feel sad. The doctors really don’t have a clue about the condition so I’m having to rely on advice from people around the world that have it, they are so lovely, it’s so reassuring, it’s just worrying because this really is a serious illness with many consequences.

I’m hoping next week will be really fun and happy. Heres to wishful thinking.