30 October 2009. signing in...

James & I was up early this morning. Nigel came home the day before from Stockholm, the rest of the with their respective parents and friends. Nigel had to go to Copenhagen and work, so it was James & I. At 8.30 James had his chest x-rayd after som yummi contrast gueeeee ;O). He did complain a tiny bit but he has the right to complain :O)! How fun is it in the morning to strip off your clothes and put your hands over your head on the side and on your back, poor little man but he was ever so brave as usal, he is made of tough material our Superman :O)!
Going to ward 67 we met Malin S and her son Filip who has had two heart transplants and been connected up to a Berlin Pump in between the hearts, it was lovely to see Filip run around :O)!!!!!! Filip is a proof of how wonderful healthcare we have in Sweden :O) and how lucky we are!!!
We shared some hugs and chatted a bit, then it was time to go up to the ward. Nice to see some well known faces. James hollowed a big helloooooooo and hej hej ;O)! We went in to the examination room for blodtest (from the finger)  James always just giggle everytime they take a drop of blood from his finger. Two fingers it turned out to be. Then it was time for EKG, length (92cm) and weight (10.7kg) and bloodpressure (hehehhe do not remember is it important ;O). During all of this James was splendid :O)!! He giggled, talked and made just one of his warning noises erggghhh sounding like a wrong dial tone :O). UNTIL, the lovely staff started singing loud and clear to him!!! James started screaming & cry all the way from his toes and up, hahahahahahahaah!! The poor staff sropped emediately excusing their horrible (not) singing, hahahahahaaha! Poor girls!

Then it was time for Ultrasound with Dr Gollam (I call him Gollum hheehe), James laid in my lap and watched Bob the builder. He did not cry but he wanted to sit up all the time. The doctor really needed all the pictures, he asked if he could give him a sedative, of course I said (hheheehehe ;O) but it will probably do not do a lot of difference, the docotr did not belive me, James had the maxdose without BIVA assistance.James giggled and thought he life was really funny, but still strong as an ox the doctor gave up, until later on. Then it was time for a laser (!?) test on his arm, because of a research they now do on children having their TCPC done, he had to be still for 45 min, luckily James was a bit tired and with some reading it helped. After, time for ultrasound again with Dr Thomas Higgins (am) and Annika the research nurse.Dr Higgins spoke am to James, did some singing, as he said I was probably more amused about it than James ;O). After some struggle they had all the pictures on the heart they needed originally and from the research.Just one ultrasound on the side of his neck left by the nurse to read the blodflow, thats when James had it!!!WEEEEEEEEEEEEEEEEIIIIIIIIII!! Life was not fun anymore! Afterwards he had a ice lolli, we waited in the ultrasound room for the surgeon.
I was told last week that James original Surgeon Sune Johansson (Cheif) had other things he needed to attend so therefore another surgeon would do it instead, Jens is a really good surgeoun as well of course,  who assisted Sune on James first op. Anyways, I wrote back to the secretary and asked her to send "King" Sune our love! She replied and I asked if she could tell him the nice thing I reffered him too. I replied back with you can tell him more :O)! I said please give him a big hug from us since I am one of the crazy mother who throughs myself around the poor mans neck everytime I see him! I wrote unfortunaley you do not see these heroes as much as the other lovely staff, they come in and do their great job and then moves on to save more lives. It is a great honour for all of us to have one of the worlds best heart/child/surgeon living in Lund (he really is top of the range and has developed his own surgeoun technics so he actually operates these HLHS children stage 3 when they are only 2-2,5 years when they usually has to wait until 4 years in most places, having higher oxygen saturation sooner cant do any harm!!). I also wrote please tell him we hope he had a great elkhunt (yes I hear som rumers sometimes), I really envy all of those can see him in action in surgery and he will have fan-mail in the post before Christmas :O)!!I also put of course we all how faith and trust in Dr Jens since he is a great surgeon as well.
One of the nurses came in to the room where James had his ice lolli and I was cleaning up the mess, she said, Sune will do the job. I said noo wow i thought it would be Jens, she said, no there had been some reschedules ;O), WEEEHII!! Sune walks in to the room with a smile on his face stretching out his hand, of course I was so happy I gave him a big hug :O)! Turns out they will have Islandics coming over because they want to bring children to Lund for operations, Sune hade checked up they would not arrive until 14.00. He said "oohh I will start operation 9.30 and will be finished by 13.00 (like having a coffe & a sandwish ;O) so I still have time". BLESS HIM, HE IS A HERO!!! ALL my worries for the surgery just went away, I asked about Jame´s "chicken breast" his sternum has a big lump sticking out which hurts him sometimes, but unfortuanely Sune cant do anything about it, he said it will correct itself more after time. I brought up my tiny worry about having a seizure since I know a little boy who had it last year, but like he said it is very very very rare and of course always a tiny risk with a heart surgery, I am calm :O)! A hand shake as a buy see ya Monday and James held up his arms and sticky hands, I said I think he wants a hug now (poor man) James had his big hug from his Surgeon and I had a big lump in my throat :O)!"King Sune" himself will do James third operation as well :O)!

Ok Ok Ok Nigel is not worried ;O) hhahaaha, yes I admire this man greatly, he has saved our sons life, he is a GREAT SURGEON, I love medicin and I am hugly interested in it and I would LOVE to see the man working. What can I say, Surgeon King Sune is the BEST!!! Siiiiiiiiiiiiiighhhhhhhhhhhhh ;O).

James was connected up on to a EKG that he would have on for 24h for the research, so he had to wear a rucksack (first time). James had the highest gear out in the corridor on the Bobby car, Nutrisionist Lovisa came and we talked about the low fat diet James will be on after the surgery since they have discovered the children leak fat out from their lymphs out in the chest and out the drains after surgery. It will not affect James much since he does not eat usual food and he will have a special formula.

Anastethic doctor Valeria whom we had before and she is a great doctor will join on Monday, lovely to have another wellknown face during the surgery, it makes me calm :O)!

James bloodsamples did not look great with a high HB 160 and the kidney tests. But I told the doctor James had not gained weight as he should and he was probably was a bit dehydrated. He agreed but still wanted new tests on Sunday afternoon.So I will tube feed James a bit as well!

We were off home. James fell asleep in the car, still slept at 16.00 when I put him in his bed, I collapsed on the sofa and fell asleep myself. It had been quite a full day and with a lot of emotions.

Nigel came home just after we had woken up. Tea, sweets and a snuggle later on. Now it is just to wait!!

Cross your fingers!!!

Lots of love, Malin

Flu

Oh dear to say the least. Our family has had a horribly flu going aroung 40C in fever and totally out of it, no coughing though. The only ones who escaped from it is Nigel, Timothy, Mårten, Sofia and James. Thankfully James has not come down with it and hopefrully he wont!!

"Lovebly, lovebly"..........

Yes the "Lovebly" song continous :O)!! James certainly inheritaded his fathers musical talents singing high and loud to everyone who wants to hear or not ;O)!

2nd- 5th of October- James ill

As Mummy and photographer I have been busy this week. I had my first proper photoshoot request :O)!!! I hade offered three photos with James holding a heart in his hands to the heart child fund here in Sweden http://www.hjartebarnsfonden.org/ if they had in use for it the could use, since I took them to hope help raising money for the fund. Honestly, I did not think they would be interested. But they were :O). first they asked if they could use on the front of their magazine http://www.hjartebarn.org/page64149.html and maybe have another one inside magazine, guess who was over the moon ;O). Anyways a couple of weeks later I had an email from a woman working on Hjärtebarnsförbundet and she asked if I hade more photos and if it would be ok if I they printed them up as greetingcards and sold them for the benefit og the heart child fund :O)!! So that was what I was doing during this whole week. But poor James fell ill, had a bad cold and did not want to be infront of the camera, or should I put even less infront of the camera ;O). I managed to take some and with some creativity it worked out. A good friend of mine http://maximozolsson.blogg.se/ Chatrine has a heartchild as well and I hade taken photos of Maximoz just the week before, so I knew he did not mind sitting still infront of the camera. I took my chances and asked if they would consider having their son on some of postcards, they were happy to help out :O)!! So we went their on this Thursday. Maximoz was not hundred percent and James was not happy at all during the time we were visiting and crying all the time :O(!! When we arrived home he was even worse poor little man, he had sky high fever :O(. Since James has and Immunology problem against viruses we have been instructed tio drive to the child emergency and take a test for the Swine flu. We were standing outside like plaigs waiting for the nurse, James was happily talking in the pushchair and I was feeling like a fool gping since he was so vitally well, but still I knew no chances we want to take! The male nurse who arrived att the door looked sceptical, I told him about James and how it was necessary to check him up. The nurse still looked sceptical, but was quite infomed when he came back ;O). Appearently when he put in James personal numbers a big warning came up on the screen. He asked us to walk around the hospital to the isolationunit, We had been there several times before so we headed over there and rang the bell. We were let in, not long after two aliens and Donald Duck came inside the room. The female nurse and female didoctor hade protection over eyes, plastic wrapped all around and the male nurde hade a moutH protection I have never seen before and most probably will never see again (since they refuse to wear them otherwise ;o), but they were out of the proper ones. It was shaped like a ducks, hhahahahahaa!! Of course with my sense of humour I could not be quiet ;O). James was shocked, he usually screams when they take out the stetoscoped but he just stared at them, adn I referred to Donald Duck infront of him ;O). Anyways quickly the dotor saw that James had double earinfections and a very sore throat. So no bloodtest needed. He was described a new pencillin and he will not take the other one whilst he is using the new one.
Before the pencillin kicked in, James was worse during Friday and Saturday. He ate minimal, vomiting as he usually does when he is ill and coughing a lot. On the Saturday his nappy was so dry I decided not to give him his Impugan, since he had eaten badly for two days, I was scared his bloodpressure would become too low.James has his button, but it rarely works to use now, he is pulling and screaming and vomiting. Poor little man could not sleep either even if he still had sky high fever. He was placed on his thrown in my lap, poor Daddy was not able to help out, since he was not allowed by James. When 2.00pm arrived I still thought it was nuts to give him Impugan, but I wanted to be in the clear with a doctor, so I called the child cardiology unit ward 67 in Lund. Thankfully, James doctor Peter Munkhammar was on the shift. I came clean and said I had not given James the Impugan and it had happened in the past as well that I hade put out one dose if he was ill not not keeping food down.I had called the ward about 50 times since he was born and had the same reply, do not give him the dose. I said to Peter it did not make sense to give James Impugan and asked if he agreed. Of course he did ;O) he told me to put it out completely then he gave me his normal praise as a parent, he is a self asteem booster this doctor ;O). We went on to books as we usually do, he takes his time and are very rarely short and stressed :O)!! Then we talked about the flu vaccine the media hysteria etc etc.
James had a higher dose of Impugan a couple of weeks ago since he often looked like a boxer and with only two doses he leaked theough everything for a week. So with him it is easy to see (except for empty bottles ;O) when it is time to give him Impugan again. I gave him his first dose today (read Monday 5th), back on track!!!!!! James did not even have a nap today, he is probably sick and tired of being still ;O).

21th of September

James took his very first steps :O)!! He has not taken many since, he is probably practising in secret ;O).

Happy Birthday James!!!!!!!!!!!!!! 2009-09-20

Hello everyone :O)!!

Yes it was James's birthday yesterday :O)!!! Thank fully for me I had received my flash recently so I could live with taking some photos inside :O). No cake (he would not eat it) for James he has just started to try some chocolate pudding by himself so that was one of his treats this day. None of the brothers and sisters were home so we will have a party later on.:O). I took some planned photos and some, even if it is not often enough, some situation photos. The best gift he had to open this day was from Nana and Granddad, a remote car (I mean how cool s that :O)!!) and we had "just" bought him clothes hahahaha, but James will soon have his own room and everything with it. The sweet chilli photo, yes hrrmmm he keeps on steeling it and he loves the taste of it hahahaha! Time to put it on the top shelf in the fridge ;O). I was fiddling with the camera and flash in the sitting room when I heard some suspicious noise in the kitchen, yes it was the sweet chilli again, he skipped on his bum into the sitting room where I waited with the camera .The photos with the apples was a two minute session, that's the time he gives me, he hates the camera for some reason ;O), thankfully I know he LOVES apples and he calls them and tomatoes (another favourite) balls, hahaha.

Another year is another victory, even if James is not in any big risk zones it still is a big miracle for us, and for me lots of tears the day before thinking of things I should not and flash backs. But the gratefulness is even more overwhelming, we are very fortunate :O)!!!

James will soon be walking as you can see on one of the photos he does raise up on his own now :O). James loves to sing, he loves cars, trains, busses, tractors and dogs. James is a cheeky, determine, happy, cheerful, karate kid boy :O)! After the operation we will be ruined ;O) of the cost of all the flowers to all the WONDERFUL staff in the hospital for all pain and suffering they have endured ;O) ;O) ;O) HAHAHAHHAHAHAA!! James shifts around quickly though as he always has and (of course he should went his pain and frustration :O(), with a big smile from ear to ear on his face :O).

Hope you are all well :O)! James operation is coming up in October (we have heard :O) we need all the fingers and toes crossed from you and if you want to through in a prayer or many prayers for James (this is though the lowest risk operation of the three) it is very much appreciated :O)!!!!!!

Lots of love, Malin, Nigel and Co

http://www.fotosidan.se/member/view.htm?ID=135261

Ps. You that have asked for my website/portfolio, it will be up and running within a week, I´ll let you know :O). Ds

Just som recent photos of James :O)!

James goes to Austria/Italy/Germany-17/7-

Ok Mummy came home threw off her clothes from the funeral and we were off!!!
I had a really nice time in the car, Mummy erved me things and I watched Bob the builder on the way :O)!! We hade some McDonalds on the way, I Like ;O)!!!. Chips that is ;O). Germany was a really long way to go by car. Mummy and Daddy was tired and stopped at a gas station to sleep. After an hour I wake up and see the best holiday place ever! A carpark!!! "Wooooooooow a CAR a CAR a CAR"!!!!!! I was all excited, I could not sleep anymore. Mummy andaddy just grunted, gave up any sleep and we were off again on the road. I soon fell asleep again.

Mummy- you were a really a good boy during the trip. Daddy and I was a bit concerned since the further south we went, colder it went :O(!! When we arrived in Seefelt, Austria it was 2+Cand raining hard!! But the other days it was between 26-36 C, if we were not high up in the mountains of course :O). We just laughed, blimey we all had shorts and summer dressed and it was winter climat in Austria. The hotel was lovely and the surroundings! The nice owner of the hotel, David gave us a bigger room than we ordered for free. The hospitallity was lovely! You darling was the star of the hotel! You were the youngest guest and every evening when we went down to dinner in the restaurant (since we had half board) the other guests greeted you and told you how lovely you are :O). Of course you enjoyed flirting with a young lovely Scottish girl ;O). One of the evening you started singing in HIGH tune your own song with your new word lovely. You sang LOVEBLY and LOVEBLY all over the restaurant :O). We tried to hush you down a bit, but like the star you are you want to be seen and heard ;O)!
You enjoyed our trips up into the mountains to see the cows and horses on the way, some Italian icecream in Morano Italy :O). You had your own cot at the hotel so you were very comfy and felt at home :O). Ohh little darling, when we wre travelloing you could only say one of your siblings names, Sia (Sofia), you called for her in Italy, knocked on the bathroom door at the hotel screaming SIA!!!Hahhahaahaha, so sweet :O)!
The last couple of days we went over the border to Munic Germany to see your addys cousin Rachel, her husband Andreas and their son Owen :O). We had such a lovely time :O)!! So did you playing with Owens toys, eating icecream in the park and going in to Munich by TRAIN. WOW it was really exciting for you as well my darling :O)!!!
You have not gone down ill for two months now, must be a record :O)!! But you you are very often sick vomiting to right left and centre, poor little man. Your operation is coming up soon, all I can think of :O(! It is going to be lovely when it is over :O)!!!! I Love You little sunshine :O)!!
Mummy

Farmor Gretas Funderal- 17th of July 14.30

We took off Friday the 17th of July. it was a bit later than expected since Mummy had to go to her fathers mothers funeral (Farmor Greta) earlier in the day. So it was a day really mixed with sadness and longing versus a great happy excitement to our holiday together!!

The funeral started at 14.30 in Helsingborgs Kreatorium so Mummy went off in good time. She had been thinking what to wear for the funeral, the classic black skirt and black top?? Hmm no well it is not my Mummy really and in her great love for her farmor she knew what her Nan would have liked to see her in. Just as Mummy Farmor Gretas favourite colour was green. Farmor Greta was an extra ordinary woman!! Know you might think "who does not think such a thing after missing a loved one?". But it is more than true :O)! Farmor Greta loved working in the garden a grew a lot of vegetables, potatoes, strawberries, fruits and great huge range of lovely flowers in the garden. The garden was enormous!! On top of this she was an incredible baker and cook! It was like being in heaven :O)! She used to invite all of her children and their children to big dinner parties on Sundays. When you walked in you where overwhelmed of the beautiful smell of her turkey, lovely gravy and cabbage etc. Actually when my Mum was younger and worked out a lot her Nan used to bake an extra cake beacuse she would come ;O). Her own strawberry and cream cake, yuuuuuuuum :O)!!

On top of all of this Farmor Greta was an artist with her hands, her sewing dolls, clothes, pillows and everything around her. Back in the days she made batic dresses etc.She was a fanatstic at knitting as well! She never wasted anything, she used if for her craft. She made little santas out of cotton, she made all sorts of things, with a lovely creativness!!

Mum used to go to her nan as often as possible on the Sundays when her aunts showed up as well to help Nan out. It was one of her best times, a place for her to relax, feel the calm, and boost of energy around loving people :O)!! When she moved to Daddy and I was born it became less of course. But every Sunday she looked at her watch and thought extra much on her Nan and felt sad she could not make it. She knew her Nan did not blame her, farmor Greta was one of the most unselfish, generous and understanding people there was. She never complained about anything. When my Mum could not make it for a couple of weeks she gave Nan a quick call. Farmor Gretas heart was weak and it got worse and worse with horrible symphtoms. Even then Greta did not complain, she was just not that kind of person, making a fuss about herself. My Mum went as often as she could, when Farmor Greta could not be home anymore, ended up in hospital and moved around a bit, my Mum went there often, as often as she could, a couple of times in the week. Many times Farmor Greta was too weak to be awake but it felt nice for Mum just to sit there by her side. When she was a awake there was some funny moments as well with Nans room mate. But shortly their was no life quality left for Farmor Greta, she was moved to another hospital. I followed Mum their ones, she did not really want to go with me but she had no choice, there was a risk I would scream my head off . But I was sweet as gold :O)! Do you know what? Farmor Greta was awake :O)!! She was even sitting up on the side of her bed watching tv and having some coffe, my Mum was gobsmacked and happy :O)!! So was I, I gave Farmor Grtea some big hugs and she loved it :O)!! She really, really loved children, and me of course ;O)!

Then Farmor Greta was moved again... to her last place. Mum went to see her several times, my Mum was not quite herself, she was worried about her Nan, Dad, aunts and uncle. Mummy prayed that her Nan would be let free from the suffering she had (even if she in her selfishness rather would have kept her Nan longer!). Mum had told her that she loved her very much and she had been able to show her, her coming profession, her photos, she had given Nan a special photo she had taken for her. My Mum was so proud that her nan actually remembered she had taken the photo for her.

Then the day came, that we all had expected, prayed for and dreaded. Farmor Greta died June 13 2009 at 22.00. Mum saw an sms on her phone at 01.00. She called her father who was out on the tanker working. The day after shen followed her aunts to say her last good byes (for my mum it is just the shell that is left). But for Mum it was more to be a support to her lovely aunts in their grief. Mum cried before and after going. Mum said that Nan Greta was now in piece, she could see that she was. On her way back home she bought strawberries, which makes her think about Greta. She wanted to take pictures of the in a bowl on the grass. She expected me to sit and eat a strawberrie at the distance while she was working on her photo.Hahhahahaha!! I thought she needed a photo assistence ;O)!! After a while I was sick and tired of chumping on my strawberries I wanted to pick new ones from the bowl. Well after some nooooooooooos Mum decided HA good idea :O)!! I made the photo not Mummy ;O)!!

So what did Mum decide to wear?? She talked to her aunt if it was ok not to wear black and she said it was ok since she thought Nan would not had minded but a skirt or dress would have been nice though, because it was important to Nan that women wore not trousers. Mum bought a long green dress with leaves and som darker yellow flowers on it. She said nan would had loved it, green and on it was what Nans loved garden. When Mum went to the funeral she first went to the wrong place, typical ;O) but it was just right beside the right place. When she arrived she saw all her relatives, all dressed in black, hahahha, she mumbled "typical me" to herself walking up tp them, she were sure her Nan giggled as well. It was a sweet and sour meeting, lovely for her to see them all but in a sad way. The funeral was beautiful with many tears. Mum took photos after the funeral for everyone and on the flowers. She wassitting on small stones, her knees digged down and her bum up in the air on the churchyard taking photos of flowers. Two of her sisters Lina and Emma acompanied her for a while. When they left she talked to nan for a bit. The she went home, changed and we were off.. Ps. Mummy knows you are cooking for all in heaven. ds

James stood up 1rst time Friday!!

Hello, I am back ;O)!! Still a bit much left of me but Nigel has finally fixed my IPOD Touch so I will have loooong walk again, but with my camera :OD! Or It is Nigels ;O) as he reminds me of from time to time, so I have found one I would like to invest in, in the future. A Nikon D3X it costs only about £ 700!! Hahahha only mentioning it makes my husband close his sweet mouth quickly ;O). Feminin list as we call it here in Sweden....
Anyways. Poor children have been ill again, and they are still. Lots of coughing and James has fever. Last Friday Elisabeth (the contact nurse) had arranged for James and I to see the whole team that day. I have had to cancel so many times because James has been ill so we needed to catch up. First James was on the scale and we checked his length. Not a popular thing! But he is keeping his curve at -2 as he always have done (well almost) . Then it was time to meet up with Elisabeth and Lovisa (the new nutritionist). We chatted about food and how James has improved with his intake, meaning he has more of an interest of food which has never been there before. The other day he stole a pear when he was sittng in my lap, he suddenly started chomping away. James eats a banana by himself, sandwishes, crisps, pringles etc. This is a majore improvement!! I can now see him be without a button. I also mentioned we havdn´t had to drip feed James for 3-4 weeks at all! We had a nice chat and I could not help to think how nice it was to escape from the house for a bit, hopital trip is nice actually since I now "know" the people and it is not an emergency ofcourse. James was coughing away and was very tired just like I. James struggled quite a bit Wednesday night and Thursday night with sleep because of him coughing. Several times James paniced when slem had built up too much and he could not breath as easely. James colours changed dramaticly and at one ocassion I could not hold my tears back. I was not hysterical at all but it was overwhelming. Mostly because I was "watching" since Nigel was holding James during one of his panics. James held his breath for such a long time so both Nigel and I had the time to say "breathe". When he started breathing again I became so releaved and I thought back to when James had apnés, it just hit me.
Then we went down to the Physio therapi, Charlotte was mightly impressed with James improvement, and she gave me huge compliments with saying "no wonder" it is honestly thanks to you he has come so far already, the way you are with James no soft softy protecting him all the day. Very nicely said of her and I actually think I stood taller for a bit :OD!!
Up we went again and it was time for nurse Marina to give James his two vaccinations for the this month, one in each leg :O(!! Not fun for anyone in the room, especially not for James naturally. Marina looked after James for a bit after (since he had to be around for half an hour to be checked for reactions. I needed to buy lunch, lots of medicin to pick up and order. When I came back James was soundly asleep, we went to see Katti Falk the psychologist at the ward. We talked around how it feels for me thinking of the OP and other things that has troubled me. But now I am feeling much better thankfully :OD!
In the afternoon at friday all my boys and I went to Höganäs.E, C and N was going to their father and Timothy, James and I went to Disa. Nigel had a concert in the evening, on the Saturday he decorated our bedroom and prepped the garden for vegetables growing there soon. On the Sunday (today :O) Nigel had his first big Solo performance at a church close to Höllviken in Sweden. He played for an hour, 6 solos and 1 duett with Pernilla on piano.
We had a very nice time at Disas, though James was not feeling well, throwing up to right left and centre, not eating couging and needed to inhale Ventoline. James was not a happy chappy, whining or crying alot of the time, not sleeping much so I feel like a wet rag. I almost went home yesterday, but I though no way it is not often I do anything and when I do there is always something up to stop it. At 13.00 today I gave up. I still had a wonderful time with Disa, but next time I take a time away from home, NO children invited hahhahaha!!!
Nigels concert went very well. Last weekend Nigel was at Championships in Denmark with Öresundbrassband (http://www.oresundbrassband.com/) and I was home with 8. Luckily the new Euph showed up two weeks ago, Nigels new Besson Prestige!!

Ohh yesterday I past by my Dads house and just wanted to say hi to him since he just arrived back from the seas. He was not home though. The neighbour Olga (she is about 85years old)across Dads house was home so I just popped in to give her a big hug, I was supposed, yet again to have visited her but James was not well enough :O(. Anyway, I gave her a big hug and met another former neighbour of mineon the way out, Sonja (70 I would say). We just said quickly hello and ask how we were etc, she mentioned she had seen the Christmas card I sent for Olga. She gave me a long hug and then she said, "you are a wonderful person, you always think of others". I was not prepared for such a warm complimant out of the blue and it just brought tears to my eyes :O), it will warm my heart for a very long time :O).Sweet Sonja said such sweet words and I have not met her for a very long time.
Today I had another very nice surpise from another warm person. Juliet :O). She had sent me the sweeetest Ecard ever! Compliments about my photographys etc. It means so much to me!

My Irish girlfriend is ding well and so is her family, although i am surprised Andy is not limping or anything ;OD! OFCOURSE it was the lady in the house who made the new printer work TJOOHOO! ;OD ;OD. 4 weeks to go :OD!

James is talking more and more, in English :O). April/May is the last we heard the operation will happen!!
http://www.malin_ward.fotosidan.se/ my portfolio so far :O)

James has fever, yet again.

Poor little man. As soon as someone asks how Jmes is doing he turns ill again, bless him!! Nigel, james and I have a quiet weekend without the other seven beloved children :O). Well quiet I would not say james is no happt chappy, Nigel had a lamp falling over his head today during decoration and I (?), working on my photoportfolio :O). Lots of hard work to become better within photgrapht but LOTS of fun. I am sooo HAPPY I have found something for myself!! You who wants to follow my photographs can see them on http://www.fotosidan.se/member/view.htm?ID=135261 please keep in mind I am GREEN and a beginner!! Anyways I took new photos of James today haahahaha (it was before i relized he had fever) well he was still a couple of seconds at the time and I had set the camera in not the best way anyways I will put some of them on the blog :O).

James wants to stand up more and more now and reaches for everything, hopefully he can walk before he is two years :O).

James can say more words now, the new ones are "look" (lack)Lala (in Teletubbies) "Hello". Well he does not do requests :O). James spoke to Nan today, he was a bit rude because he blew raspberries :O). Otherwise he chats away like you understand everything.

TV Öresund- James goes famous ;O)!!

Ok did that done that, never again hahahhahaha!! A local Tv-station came over today to interwiev James and I. Hopefully it will be veeery quickly on me and looots of James, ill write more tomorrow Cheerio!!! XXXXXXXXXXXXXXX

Long time again...

It was a long time ago I wrote on the blog. Life is flying away! James is doing "fine" at least he has not needed to be hospitalised. Fine means heart wise, which we are greatly grateful for!!! Despite that James has been ill with virus infections since late October. Everything from a temperature, vomiting to right left and centre (so he needs to be connected up with drip feeding). not feeling like eating, runny nose, eye infection, stomach flu, the flu with coughs it has just been going on like a train with some small stops with some day then it is on again. Poor little man, I feel so for him.!!
Wow, I have been outside this week!! Went to the hospital it felt like a luxury holiday, I had a chat with the wonderful staff, some hugging :O) had a laugh, showed off James and James had LOTS of attention, of course and he enjoyed it :O)!! Except for this week I have been in the house 5 weeks on the trot with sick children. First Elliott and I came down with the stomach flu, Nigel, Mårten, James and Timothy started as well, we were 6 ill at the same time. Luckily it came in different degrees, Elliott and I were the worst, James LUCKILY only came down with the Trotsky's, a bit ironic but lovely he did not throw up at the time since he would at 99% been hospitalised. It started at the weekend and Timothy was home all the next week, went back to school the following Monday, in the evening he had high fever and coughing! The the regular flu started going around among us. Prior to the flu's I went in with James to the hospital since he was acting funny. James was very very tired, slept almost all days and when he was up he hardly had the strength to sit up, he leaned down on the floor whilst sitting up to rest his head on the floor. He scared the living life out of us! His colour was fine except for his feet were very blue and cold as ice :O( he was not swollen in his face or anything, but it was the very first time we were scared that anything was wrong with his heart. James had been like this for 4-5 days and not had the strength to eat so I went in to the hospital for a checkup. Dr Higgins checked James out and thankfully could not find anything specific. Guess what happened the next day?? James was himself again, skipping around like a chimpanzee on his bum, eating like a horse and had a big grin on his face, like; "I fooled you, ha ha ha ha" ;O)!!
I am a happy, bouncy, humorous and outgoing person (if I can say so myself ;O). I have gone through ridiculously much in my young life. Some traumatic periods and I have dealt with it. Last year in the autumn I became very low and depressed. You can only take so much in your life until the brain and body panic brakes. Something happened in my life (not in my family) which made me deeply, shocked, disappointed and unhappy. When this happened everything else started to roll up, the trauma with almost loosing James, operations, past bad experiences, my life situation and being at home many times isolated because James is vomiting left right and centre. I slammed into the wall, basically. Total shutdown (as much as you can when you have many children, luckily I have them then I have to go on).

Last year a woman interviewed me for chronicle about sick children, so yes it was about James :O). She asked me a question. After going through everything about our family, my darling husbands music hobby etc, she asked me; "but what are you doing for yourself Malin"? I did not know what to answer, speechless and I felt rather stupid and I thought a long time after, yes what am I doing for just myself?? I have been doing ceramics which I loved and had some talent for, sculptures that is. But I had to stop when I divorced years ago. I had planned to start it up again when we extend garage and have a ceramic studio. But I have been thinking about it, how expensive it is, the mess etc etc not felt so ecstatic about it. Then I had contact with a friend, we do not talk often but now and then. She is one clever business woman with her own company, very ambitious and great at what she does. She is a photographer. She gave me a link to her website and it greatly inspired me. I thought, blimey I have taken thousands of photos of the children over the years but never ever thought photography. We have a Nikon D80 a SLR camera, so I thought why have I never thought of it before????????? I have not been able to take many portraits yet due to bad weather :O(. But there is so much more (even if a dream now of a photo studio where I can take portraits of manly children in the future as maybe a side business), well Idream ;O). There is so much to learn and you never stop learning. I do not have a portfolio yet, I am just a beginner but here is my profile on Fotosidan.se http://www.fotosidan.se/member/view.htm?ID=135261 The portraits of the children are many taken before my interest took place some good and some just on my albums because I like them even if they are not technically good.
Sometimes someone can ask you a question and they do not realize how important it became to you, I thanked the reporter through an email, I have finally found something for myself!! Sometimes the children are involved as well in front of the camera or as assistants throwing water :O).
I am feeling a bit better now thankfully both for me and my family. Things happens in life. You can have a friend for many many years and suddenly you realize the friend was not as keen on the friendship as you were. It is true as it says, when you go through horrible times you know who your true friends are. When James was born was definitely one of them. Sometimes you think the world of people and then suddenly something happens and you realise how little you really knew them. I am an honest person and I expect others to be honest back. It is horrible when people say yes but they do not really mean it and then you have to pay the price for it, people that just sweep things under the carpet, acting horribly as adults and then do not apologise and acting like it is raining. What is that all about?????? Life is too short for such nonsense!! When I have been feeling very low it has not only been about myself of course, lots of worries and empathy about my closest ones, how things affects them. I have been very angry about the waist of life and precious time, some people are so spoiled and have the audacity to put heavy load on those that are already crumbling. Nigel has a high working position with all the stress, we have 7 children and James. We have our own shared bit.
Now over to more fun things in life! GREAT FRIENDS!! Family Merediths are coming over from England in 8 weeks for nine days! WOOHOOOO!!! Andy will only be served Broccoli and chocolate milk with Vodka ;O)!! No seriously it will be lovely we have a great laugh together. I am so happy I have found a true girlfriend (Lorraine), she is my age and married to an "old git" as well ;O) so we have lots in common and lots of fun. Their sweeties Nicola and Ryan are coming as well and the children and we are looking forward to have them over as well. We have started to redecorate our bedroom. Nigel, James and I are sleeping in the sitting room just now :O).
Life is disappointed sometimes, that is life, full of challenges, but when someone treats you bad you have to keep your head high. It is a great shame, some people want to waste precious life and time that will never come back again.
James is having his operation in May (at least how it is planned), I am not looking forward to it. I find it much harder now when James is older and more aware of things happening around him. It will mean quite some time in hospital, between 4-6 weeks is counted for, if we are unlucky, monthssss it can take. But there are months left, I worry two weeks before then I take it as it comes.
James says his first words; lamp, tack (thank you) bye bye, nose. Wonderful!!!

This is it for now, not the most cheerful blog post I have written, but facts, how it should be I am not pretending everything is fine when it is not, but it could have been worse. After all we are the lucky ones, we have James with us!!!!!!!!!!!!!!!!!!!!!!!!

We wish you a Happy Christmas....

What can I say time is flying!! James went to the Imunology Doctor Nicholas Brodzsky last week. He tried to show me on a picture what is wrong with James immunesystem. One "road" is wrong where the bloodcells do not go the proper way, then he has found something strange, the tests says everything is fine the second way but the results does not. There could be a lack of a small protein on the MBL cell, if there is then James is the first in Sweden for it to be discovered on! I asked him if James will recive a diploma in that case ;O). I told him then it is not from Sweden, and Nicholas just what I was about to say it is probably from England, thank the Lord for doctors with a great sense of humour!! Anyways thankfully it is nothing dangerous, it would just explain things why James is ill as he is on and off. Gammaglobin and antibiotics will help him with the virus infections.We will have the results in the begining of next year.

We have been working with out sitting room but we have now realized it will not be finished in time. So hopefully for New Years!

Jamed has had a temperature on and off but that is how it is, fo the moment he is eating fine, he was sick yesterday big time in the evening but not as much as it can be.

My Cousin Beccca and her youngest Izabella came over for fika one day this week, Becca had made gorgeous Saffron Rolls, she brought us some sparkly white from their family to us *how sweet*! Izabella is the most sweetest girl and James was very interested, I was mostly worried she would end up with a toy over her head since James is not the gentlest now a days. But it went fine! Lovely to see my cousing again, unfortuanely we dont see eachother as much as we could , because of tiiiimmeeee!

Colin, Timothy and Marten have been making Christmas Chocolate this morning.Then we took down the small tree from upstairs and change it to the big one since we now will not celebrate Christmas in our sitting room.

The weather outside is frightning...da da da dada

We finally took the picture, yeeeiii!! Rudolph, Santa bandits, the Grinch, Star boy and the Angel in the family enjoyed it as well, it is a nice family tradition. Thank you Lorraine and Andy for your help driving around to Mother cares to find a Snowman suit for James!!

James has been sick/ill on and off since we came back from England. Two Fridays ago James came down with high fever and vomited all weekend (more than usual) so I was stand by to take him to the hospital, but I kept my head cool and thankfully it was never necessary. Thanks to the Mac Key we could feed him slowly directly to his tummy. Neville, Colin and Elliott became ill later the next week as well, poor boys. I was sure it was stomach flu James was coming down with, but it wasn't then we would have been in hospital after some hours. The slightest James goes down in his health he stops eating and vomits, just how he reacts. After about 5 days James was better but then he started coughing a lot instead and of course he did not eat much so he needed to be connected up. Now he has a bad cold and runny nose and eating so and so. On Tuesday he is finally going to see the Immunology Doctor Nicholai for the first time, after James and I are going up to Ward 67 to wish the staff all happy Christmas!!

Oh forgot the most important news!!! Filip the boy who had two heart transplants; IS AT HOME DOING GREAT!! Could it be a better Christmas!!?? Miracles happen and we should all be grateful for having our closest around!!

Finally the wallpaper is down from the walls in the living room so we are getting there. At least we will have a fresh sitting room for Christmas :O)!! I am really looking forward to spend Christmas Eve with Nigel, Timothy and James and at Christmas Day the whole family is gathered.

Christmas shopping is soon all finished here I have been wrapping presents all day, all those Father Christmas cant bring, he needs some help poor old man bringing pastels to all the children around the world...

Jingle bells, jingle bells :O)

Last years photo

Time is flying, it is soon Christmas and our house looks like a bomb went off. We are ripping down wallpaper from the walls in living room, bedroom and sorting out wardrobes for us. Like you don't have enough when you have 8 lovely children to buy Christmas presents for ;O).

We will have a nice quiet Christmas at home, just enjoying seeing the children's sparkly eyes!! Christmas Eve M, S and E are going to their mothers and C, N and E are going to their Dad. Timothy and James are spending Christmas Eve with their Mummy and Daddy. Christmas Day is the greatest day for all of us when the whole family is together .O)!!

On Christmas Eve we are having, julmust (Christmas drink), spiced herring, eggs, smoked ham, mustard, brown cabbage, salmon in different variations, meatballs and prince sausages (small ones), ris ala´malta (Christmas rice porridge with whipped cream and strawberry jam. Lots of chocolates and nuts. Christmas Day; TURKEY!! :OP small, round, green cabbage (forgot their name now), roasted potatoes, mash, gravy, Yorkshire pudding, cranberry's and a pudding after. YUMMY YUMMY. Those days I will gain what i have lost lately ;O). I am proud to say I have lost 8 pounds in 4 weeks, weeehi!! but then I have 14 pounds left to lose before I am happy. I will start working out at a gym soon as well.

James is doing alright, this morning i thought he had come down with the tummy bug, but so far it is ok :O). He is a pain in the neck now ;O), blimey I am spoiled he has sat still for so long and now suddenly he moves about :O). He is gorgeous!!!

Today we are sorting out the annual Christmas photo, thanks to my best friend Lorraine, my Irish girlfriend ;O) James is going to wear something special.

Merry Christmas!!

James has been playing with Oskar!!

We went off early today in the morning, walked down through town to the bakery, bought some rolls and then walked to see my friend Ida and her 9 months old son Oskar. We had a very nice chat, but time flied and it was time to walk back and pick up Neville at 14.00 :O(.

Last weekend Nigel started in the newly started Brassband ÖBB. It was two full working days of playing. I was home with 8 and tried to pull or scrape down the wallpaper from the walls so we can redecorate and paint. It was a nice weekend though, mostly because I saw Nigel being happy over the new band which keeps a very high standard and high standard pieces. It has always been his dream so I support it, of course. Nigel will continue in MBB as well though :O).

The whole weekend it snowed so the children had a blast in the snow and made a snow man. They rolled a gigantic snowball all the way from the playground and back to the house, where they realized we have slope up to the house. Malin the female hero wanted to help them out, blimey it was heavy!!!!!! To the childrens delight my big toe first became stuck under the huge snowball, it was impossible not to scream :O), then my little finger was trapped between the car and the gigantic snowball, was impossible not to scream. The children owed me big time!! ;O)

Frosty was soon up in the front yard, with a scarf and a carrot nose as he should have. Except for later Timothy and Mårten used another carrot for a willy, are you surprised not :O), after all they spend too much time with me ;O), hahahahaha.

Pooring down-James´s fourth vaccination this week

Nigel was home for a while in the morning and tried to sort out the winter tyres. James, Neville and I walked as usual 8.45 to dagis (daycare centre). Of course as soon as I put my head outside the door it started poring down. It was quite windy as well, a real miserable day. Poor Neville was soaked when we finally reached dagis. James had a blast, his tongue went in and out trying to catch the raindrops. The little tinker :O).

James has started to Say yes now, well as long as Daddy is not around, he refuses to say it, "I wont let him hear it because I know he wants to".

I walked quickly back home and snuggled up for a bit in the sofa. At 10.30 James and I was off again to the local Child nurse for James to be weighed and have a vaccination shot. James started complaining when he saw what she was preparing, a bit when he had the shot, but no crying being very upset, he is such a good boy :O)! Poor boy he is used to it. I thought he had lot a bit of weight but I was not sure.Going back home which is a fair walk I passed by Neville dagis on the way so went in and took him with me home again. Then it was 12.45, so we went home and I was deadbeat after the walk in the horrible weather. The big boys came home, Mårten, Elliott and Timothy.Timothy insisted on cooked tea, honestly it was a day they usually would have had to settle with sandwiches, porridge or cereals. "I said fine if you make the pancakes, with some help he did a marvelous job".

Yesterday Mårten and Colin made sausages with pasta. Since they enjoy it, wonderful for me :O). It is not like I sit down in the sofa and relaxes hahhahaha I run around like a headless hen fixing other things, see so the children don't hurt themselves during the cooking, give them tips and praise, making sure that James is not electrocuting himself or breaks anything, he is on the move now on his bum :O), I give one child an evil eye for him/her to behave, helping someone else with whatever. It is lots of fun though :O).

Today I ordered medicine for James and talked to Dr El Haddi. His Swedish is a bit hard to understand and he asked if it was OK to speak English, we've done that before and he prefers it anyways. He is a sweet, always with a big smile, humble doctor, the man who actually diagnosed James. So he is special to both Nigel and I.

My pappa called today from the Chemical tank (ship) he is working on, they are going back and forth to Germany and Holland for the moment so he is happy, closer to home for Christmas. I mentioned to him that the whole family is going for the Christmas concert this year and pappa asked if he could come and watch, so that will be very nice :O). Tickets are ordered and seats (yes a whole row:O) is reserved for us. We all have to see and hear Nigel play Ukulele!!!!!!!!!! Oh my gravy!! How will it be possible for me not to pee my knickers of laughter??? Anyways, I really look forward to it and it is going to be interesting since it is called "Christmas around the world". I love to see my gorgeous husband play, I am so proud of him :O)!! We soon have our own rockband in this house. Mårten and Elliott are jamming away together on bass (M) and Flugelhorn (E). Soon Timothy will start and play the drums and Colin keyboard. I am looking forward to it (yes I am nuts), to hear them play together.

Nigel is out by the cars again and all the children are sound asleep, WWEEEEIIIIHHH!! Because I am exhausted today, and a hot cup of proper English tea is calling :O). Ta ta...

Happy Birthday in Heaven Heartbrother!!-Vaccinations-Filip

We went to the hospital but first to the pharmacy to pick up James vaccination. Thankfully we have a lot of tax-payers in this country and a max cost you pay for medicine. James vaccination (for one a month for 6 times) cost 13.000kr!! Anyways, we were late because there were more people than I expected in the morning. James and I were greeted as royals as usual ;O). James was supposed to have two injections with the vaccine I picked up, for the RS-virus and another injection for Pneumonia. So three injections in total. I asked the nurse Birgitta nicely :O) if she thought it would be possible for James to have a sedative medicine so it was not so traumatising for him , three injections of painful vaccine is nothing to joke about. Birgitta went to ask a doctor, and it was just fine, I was very grateful!!! Dr El Haddi is the hero today :O). We went finally to Filip to give him his Teletubby James bought for him in England and we adults had a nice chat, Filips Mum and Dad and I of course. James was still groggy after the sedatives and he cried so Filip started crying, a chain reaction. Poor Filip and James. But then they played for a bit again.
In between I went to little Heartbrothers grave with a little flower,

James was sound a sleep in the pushchair. Many thoughts to Heartbrothers parent today!!! I had not seen his gravestone before since it takes some time to receive after the order, it is so BEAUTIFUL with a big heart cut out in it. I am so grateful I was able to meet Heartbrother, seeing his great big smile meant the world to me and still does!!! Ahh bless him, he will always have a special place in my heart, and his outstanding parents!!!

I went up to the ward again to have James cleared from any symptoms because of the sedative medicine and vaccines, off we went home to pick up brothers and sisters.

james was not so happy during the evening, he was in a lot of pain from the injections he had in both his legs.

Finally better from infection-Izabellas christening

James is starting to eat a bit again. Up to yesterday he was coughing a lot and the food bounced up again. James has been fed by the pump, whitch is pain in the neck now when he is moving around pulling everything including his tube attached to his tummy. I don´t blame him!
Today we went up early because James cousin Izabella was Christened today at 9.30. I was nervous that James would start vomiting on the way to the church.But he did fine, the minister and James held a good speech in church :O). Izabellas christening was beautiful. But for a minute I started thinking about those who wants to but never have their children Christened because something goes wrong and their children don't make it for some reason. I pushed those thoughts away quickly, this was a very happy day!
It was lovely to see my aunt Anki and all the other relatives and friends again, time goes to fast but hopefully I will see my aunt soon again.
My cousin Lina and I took photos of her twin daughters Nova,Vilda and James. Of course he could not keep his hands off for long ;O), it starts early, but then he was quite popular with the girls as well of course the little charmer.

November 3rd-Home-Emil & Sofias birthday-Nigel and I 2 years :O)

James was really bad on they way, home. He still did not have any fever but his eyes were really horribly infected and he vomited and coughed a lot. Poor little man :O). We arrived home at approx 3.00 in the morning. I was really worried for James and he did not sleep much.He sounded chesty and he vomited. But I could hear it was from his upper airways some of it anyways, we have been there before. He becomes totally clammed up and he has problems clearing it. So of course he stops eating whatsoever, if he eats some it bounces up again. I went with James to the hospital in the morning. Of course the red carpet was rolled out for him ;O).
The doctor confirmed it was upper airways, a massive eye infection and he said he is probably infected on his upper chest as well and there is a risk it will move down to his lower airways , so he prescribed James a horse dose of antibiotics.Poor little man I knew what it will do to his tummy :O(.
So the pharmacy was the next visit and then home. We went home and i started packing up Emil and Sofia's presents and started wrapping them up. At 16.00 they came home and could have them. They had a lovely watch each from Nana and Grandad and money from Nan. My mum had fixed bedding's for them, Bratz and Spiderman. We had a nice but a very tired evening, we would celebrate Emil and Sofia further the day after.