Long time no see :O)!

Yes life just runs away, Starting my own busy and having a huge family something will go down the drain. Well it was Jame`s blog. I use James alot as a model, now a days, since he recently LOVES being infront of the camera for 2 minutes ;O).
James goes to like a child centre/daycare everyday. James needs his sleep during the day though and during the evenings he is very exhausted. However I do not work full time, because of little James.
It is soon time for Jame`s yearly (!!!!!!!) checkup, and I look forward to it :O)!
Here comes James. If you cwant to see more, got to http://www.malinward.com/ or LIKE me on Facebook http://www.facebook.com/#!/pages/Malin-Ward-BrollopsfotografenFamiljefotografen-i-Kavlinge-Skane/152759114762100 . Enjoy.....

Time is flying

I am sorry my little darling, your Mummy mamma has not had the time to update your blog. You have been to UK and all since last time I wrote :O)! (Photos will come up soon). You had a lovely time at Nanna & Grandads with Mårten, Emil and Sofia. Well Dad and I was around as well. But I went to a UK wedding ¨photo course, Daddy joined me and we met up with lovely friends in the evening. We where away for two days.
You just loved it when we went to Bressinhams http://www.bressingham.co.uk/content/whatson.aspx amusement park with lots of steam engines, woohooo it was the highlite of your little life, bless you :O)!!!


Nan was so happy to see you again, last time was during your Christening.


Yes time is flying and Mummy feels guilty, starting up my own photography business take A LOT OF TIME. But tomorrow is a big day for you!You & I are going to meet the headmaster (you have not started yet and already called in ;O) and a special needs therapist. We will talk, so they can descide how much extra help/hours you will need :O). I can see how much you long now to play with friends your own age. In August when you start, there will be many happy tears, to see you at daycare, wow it is amazing :O)!


We love you our little prince!! I love your twinkle in your eyes when you are up to monkey business ;O)! You sooo look like your Daddy and so acts like your Mummy, in many ways.


Ohh you had some new shoes from the orthopedrics to help you with your feets position. It will take a good time for you to walk without problems. When you are tired you lose you balance often, thankfully it is nothing neurological, it is the weak muscles in your legs.


You dare to taste a little bit more, but still it is "mulk" you prefer.


You are speaking more and more now (english), you surprise me often. Yesterday you said " I can´t" and something else, I´ve forgotten now.


We love you :O)!!


XXXXXXXXXX

Peg is out :O)! 29th of March

I had a bit of a cry afterwards :O)! A big releif :O)! For some time back I could not see that we ever could take it away. I was the one contacting the staff saying we had no use of it, but of course it needed maintanance anyways. The doctors and nutritionists gave it the go a head :O)!! It hardly leaked at all, a couple of hours later the hole was very tiny. It still leaks a tuny amount so have to wait and see if it need a stitch.

We were in the ward 67 to just say hello to girls/and boys of course ;O). in the corridor there was about ten women from a hospital up north whom were visiting. James walked in between them with his "leather" pilot jacket and a jeans cap on the side of his head. They all lined up and he sung, "WE WILL WE WILL ROCK YOU!" and duch duch doff sounding like drums in the end of it, and closing with a cluck of his tounge. HAHAHHAHAHAHAHA! They laughed loudlu of course and James LOVED the attention rolling his eyes smilinge running in between a couple of times more for attention. I will be surprised if he wont be on stage growing up :O). HAHHAAHAHA! Hugggggggggz

We will, we will ROCK YOU-clock

Time is flying and James is singing! He LOVES to sing WE WILL WE WILL ROCK YOU- then he puts his tongue on the roof of his mouth doing clock sound, hahahahahaa :O)!

Walking-James is now walking more, he has his own style, a wobbly walk ;O). It will take time for James’s muscles in his legs to be strong enough. So to compensate his muscles and balance he has his own walk, his feet point (pronates)a bit out to the sides as well so he will have special shoes and sandals made up for him now, so he does not stay that way. Of course all natural things. James was extremely much in a hospital bed as a baby and he refused to even stand on his feet at all until he was approx. a year old :O).


FOOD-oh my gravy ;O). James now eats; apples (balls he calls them), pear, bananas, tomatoes (of course), yogurt when he is in the mood, his "MULK" (Infantrini formula), last week he tried some spaghetti after I made a "Lady and the Tramp" slurp for him ;O), sometimes a bit of a toast :O).Ok snacks and sweets are no problem OF COURSE ;O).


We are crossing our fingers he will have a bigger interest in food soon, hopefully the day-care will help :O)! But he has so many siblings that he has seen eating so the hospital staff said it is not very likely it will start to approve because of that. At least they said they never had an 7 year old only eating "mulk" ;O)!!!! However, of course we are grateful, James IS EATING BY HIMSELF! I can´t wait for them to take the peg out now, what a remarkable step forward :O)!!


Soon James will go and se his Nanna & Grandad and NAN whom he has not seen since his Uk Christening!!! It is going to be LOVELY! Mårten, Emil, Sofia, James and us two old ones is going over for a week by car :O)!

HAPPY VALENTINES DAY!!

Have a look out on Mummys homepage. http://www.malinward.com/ soon more photos coming up of me :O)!

11th of February- Mummy on radio

I reporter called me a week back and asked if she could interview me live on a program call the "Lunchbox" on P4 Malmöhus. She had read the article about James in Femina plus she hade googled my name and come over my photos. So she wanted to interview me bot about as a mother to many and a heartchild and as a photographer.
Blimey I was so nervous, but it was lots of fun as well since the reporter Sofia was really easy and fun to talk to :O)! Here it is :O). http://www.sr.se/topsy/ljudfil/2202233.mp3

XXX

January- James is in Sydsvenskan and Femina!

http://viewer.zmags.com/publication/c51180bc#/c51180bc/1

and http://sydsvenskan.se/inpalivet/article621354/James-tredje-operation-ger-familjen-Ward-lite-vanligare-liv.html

James is up to a lot of monkey business :O)!!

"WHAT A MESS"!!! I as usaal expression from both James and us hahahaha! If I turn my back on him he is up to trouble our little "Dennis" ;O)!!

A week back I was folding laundry and James walk away playing with a car. Suddenly I thought it was tioo quiet and went after him to look what he was up to. I heard a splatting sound and a "wow wow wow" from TIMOTHYS ROOM!!! Ok first of the children are supposed to close their door to their room, and not have schampoo bottle on their floor. James had squished at alot and was dragging his aroun in circles in the gueee. When James so me he said " OH NO WHAT A MESS" and gave me a bright smile. He ended up inte the bath which he was very pleased abpout, he smeeled lovely after since  it was and Axe schampoo he had used, a bit too much of a male smell maybe hahhahaha ;O).

Finally finished I went back to the laundry and James walked around me and went out in the kitchen and I heard him talk to himself. I thought ono whatis he up to now. I came out in the kitchen and he had pushed a chair to the kitchen top, climped up and was stuffing his face with cherry tomatoes (almost the only thing he eats except formula, tomatoes :O). The juice and  peeps was pooring out from his mouth all over him and the chair, when he saw me a bright smile on his face :O)! Hahhahahaah, another change of clothes.It lovely to see his happiness of life :O)!!

XXX

James starts walking in late January :O)!!

FINALLY JAMES STARTS WALKING :O)!! WE ARE SOOOOOOOOOO PROUD!!! It is wobbly like a little "Frankenstein walk" but absolutely fantastic!!

At Home

Everything went well :O)! James was allowed home on leave the 13th f November and he was disharged 16th of November :O)!! It is very quick, but if James hadn´t had the small tummysurgery he would have been home earlier. There was some smaller complications with a lot of pain for poor James, so of course the docotrs kept him for observations. The other reasin was their was higher risk of infections in his abdomen. James was however not happy in the hospital and he was not impressed with me :O(! It showed when Daddy came, James felt he could not trust me completely since I was the one allowing the painful medicine and examinations. He had a lot of stress within him, and nothing strange with it. When we came home on the Friday he was all happy, jumped up in the sofa and watched some tv. After about half an hour, James suddenly just started crying, totally devestated heartbreaking cry, coming out from the blue. James had been very angry the last couple of days in hospital, chasing me with the bobbycar sometimes hitting after my legs. Nothing he would do normally and nothing I would except normally, it was a release for him. Back home in the sofa he just let go of all his feelings and started crying, poor little man could not speak and tell us things
:O(. Nigel and I held him for a long time comforting him, I cried with James. Personally I think it must be the worst age to have surgery when it comes to age. So old you can remember things but do not coprehend what is happening and why and tell how you feel :O(!
It was rough first weeks. At first because James was early home and risk of infections, he had medicines at 6.00 7.00 14.00 18.00 20.00 22.00 02.00. Nigel was working abroad ALOT during rest of November into December. James did not sleep much he HAD HORRIBLE NIGHTMARES :O(! He just woke up screaming, with nightfright, when he was asleep it was a worried sleep. So I did not hardly sleep at all.Of course we have 4 to 7 (depending on which week) more children than James that need love and affecions.These weeks I felt like and horrible bonus/Mum of course I did cope properly. Except for this there was alot of times James needed to go to hospital for PF test and controls to check so he did not start collecting fluid. I am otherwise a cheerful go lucky person but when December came and closer to Christmas I felt like a dishrag, hahahahaha, not really funny but life is tough sometimes, even if your dream came true, your beautiful child survived :O)! WE ARE SOOOOOOOOO LUCKY AND FORTUNATE :O)! There is not a day I do not thank God for our blessings :O)!
When we came home a card had arrived from my friend Tina, she is also a heart mother :O)! It made me cry :O)! She had drwan a teddy vear with a red heart that hade been mended with stitches :O)! So beautiful, she had made it herself, it ment lots and lots :O)! James will have it on his wall as soon as his room is finished :O)!
James has more energy :O)! Of course I joked and asked the doctor if we could have a pill for him for his energy ;O) or a pill for me ;O). HAHHAHAHAHHAA, what is life without humour ;O)??
Sorry it is so long between the blogs, but there is always so much happening here, I will fill in :O)!
Lots of love, Malin

Friday 6th of November

James had a calm night in PICU and so did the little girl besides him :O)!! James went down a floor to ward 67 this day. It was lovely when the staff came to follow us down. Many big thanks to the wonderful staff at PICU :O)!!
James had a plush bird which u can use as a puppet on your hand as well from the ward, so it was a lovely welcome present :O)!! James was not impressed by the staff and mighty stressed everytime he had medicine in his venflone (PVK) in his hand, poor little man. The heavy antibiotics he had iritated his blodvessels and it hurt going in, it probably felt cold in his arm when they gave it to him as well.Bless him, he cried everytime he realised the staff would give him medicine in his needle. The staff had made sure he had a playmat in the room and lots of fun toys.
James did not sleep well during the night, he was crying everytime they gave him medicine in his hand. Thank fully he started eating a bit on his own, but he was connected up to the drip feed as well.
I thought I would feel happier going down to the ward, it meant victory, improvement and developement. I should have thought how lucky I was as I usually do, but I came into a dark little tunnel, thinking what is exactly "over" :O)?

Thursday-5th of November

They called me this morning, I was just up. James was awake and been entertaining the staff :O)!! Tjohhooo I half ran to PICU after calling Nigel. It was lovely to see James´s beautiful eyes :O)! James had a lot of pain on and off :O)! The staff needed to change his bedding and James came up in my lap for a bit. Poor little man had a lot of pain so they needed to flush some Ketogan, morphine. James fell asleep in my lap, it was lovely to feel him close and kiss him :O)!! Nigel came over in a hurry when he heard Jams was awake :O). I gave them two some space I knew poor Nigel could not stay for so long :O). The staff rolled in a flatscrenn tv with a dvd for James now when he was awake. Bob the builder went warm all day :O)! James was still heavily drugged for the pain and it was good that he could concentrate on something and relax :O)!

Nigel went home again, I talked a bit more with the other parents. Later this evening the little girl had a lot of flam and she was hungry and started screaming. I had my back to them but I heard the mother tried to breastfed her to comfort her. Little Miranda was more and more upset and suddenly the room was filled of quiet. She stopped breathing and the staff pushed the alarm. Of course all the staff rushed over to the girl’s bed to ventilate her. Her mother went calmly (they had experienced it before) outside, I felt stressed I so wanted to go out to her and give her a hug but I decided to stay with James so staff could concentrate completely on the girl and I sent my thought and love to the mother. I was not stressed about the girl; more about the mother, poor little sweetheart was in the right place at that time, the reason why the children are there after a major operation, but nevertheless a worrying time for the parents!!! The girl started breathing quickly again after some adrenaline and with lovely Ruben for ventilation :O), bless her!!The father stayed in the room. When the mother came in again she looked at me and we both put our hands on our hearts when she passed by, a mother to a mother meeting, when something happens to another heart child it is very close to heart!!!

I thought about the incident going back to the room in the evening. How much I have gone through and experienced since James was born. I have always been calm during emergencies with adults, I have been around before, but only the thought of a child stopped breathing or being ill in the past I panicked inside (naturally nothing I take lighten of course anyways. Sometimes I don’t know if people find it a gift I have received, a sickness or just madness during everything I have gone through with James ;O). Being at home with him and he stopped breathing and I calmly pushed him to start breathing again etc. Sometimes I don’t know if I should laugh or cry, but I´ll choose laughing and see it as a gift, a gift of being strong and secure in a emergency and not” lose my head” and freak out I have to see as an asset, I am certain it has helped me mentally or I would have gone under. I think everything in my life with many children and a husband that works a lot I have not really had the time to collapse completely during a longer time.



I called Nigel and talked off the incident and gave him update about James, he was fine and a sleep :O)!

Wednesday-4th of November

The staff called me this morning, I was just up. James was awake and been entertaining the staff :O)!! Tjohhooo I half ran to PICU after calling Nigel. It was lovely to see James´s beautiful eyes :O)! James had a lot of pain on and off :O(! The staff needed to change his bedding and James came up in my lap for a bit. Poor little man had a lot of pain so they needed to flush some Ketogan, morphine. James fell asleep in my lap, it was lovely to feel him close and kiss him :O)!! Nigel came over in a hurry when he heard Jams was awake :O). I gave them two some space I knew poor Nigel could not stay for so long :O). The staff rolled in a flatscreen tv with a dvd for James now when he was awake. Bob the builder went warm all day :O)! James was still heavily drugged for the pain and it was good that he could concentrate on something and relax :O)!



Nigel went home again, I talked a bit more with the other parents. Later this evening the little girl had a lot of flam and she was hungry and started screaming. I had my back to them but I heard the mother tried to breastfed her to comfort her. Little Mirella was more and more upset and suddenly the room was filled of quiet. She stopped breathing and the staff pushed the alarm. Of course all the staff rushed over to the girl’s bed to ventilate her. Her mother went calmly (they had experienced it before) outside, I felt stressed I so wanted to go out to her and give her a hug but I decided to stay with James so staff could concentrate completely on the girl and I sent my thought and love to the mother. I was not stressed about the girl; more about the mother, poor little sweetheart was in the right place at that time, the reason why the children are there after a major operation, but nevertheless a worrying time for the parents!!! The girl started breathing quickly again after some adrenaline and with lovely Ruben for ventilation :O), bless her!!The father stayed in the room. When the mother came in again she looked at me and we both put our hands on our hearts when she passed by, a mother to a mother meeting, when something happens to another heart child it is very close to heart!!!

I thought about the incident going back to the room in the evening. How much I have gone through and experienced since James was born. I have always been calm during emergencies with adults, I have been around before, but only the thought of a child stopped breathing or being ill in the past I panicked inside (naturally nothing I take lighten of course anyways. Sometimes I don’t know if people find it a gift I have received, a sickness or just madness during everything I have gone through with James ;O). Being at home with him and he stopped breathing and I calmly pushed him to start breathing again etc. Sometimes I don’t know if I should laugh or cry, but I´ll choose laughing and see it as a gift, a gift of being strong and secure in a emergency and not” lose my head” and freak out I have to see as an asset, I am certain it has helped me mentally or I would have gone under. I think everything in my life with many children and a husband that works a lot I have not really had the time to collapse completely during a longer time.


I called Nigel and talked off the incident and gave him update about James, he was fine and a sleep :O)!

Tuesday-3rd of November-PICU

I had my alarm set on 5.30 I wanted to be at PICU early if James woke up. Just before the alarm went off the phone rang, it was the staff. James had been worried during the night but not awake enough to call out after me so they did not call me. He had a lot if flam and pain and it made it difficult for him to breathe since they had give him more sedatives which knocked out his breathing. Even if I knew it was a “small, common” setback it made me stressed since I would have preferred to be with him when he was under stress and intubated. But I had not made that point to the staff and I think most parents do not want to be in the room under those procedures and he would not have known if I was there. I was quickly ready and made my way to PICU in the culverts. I thought about why they put him back in the respirator and it sounded it was for humane reasons not that he could not breathe at all by himself.

James was at rest in the respirator. I went out to Nigel a call so he knew about the slight step back. They would bring him out from the respirator in the evening again. Later that morning Chief Surgeon Sune came in to check on his patient. I could tell he was not impressed. He came in and asked the nurse why James was in a respirator she just answered it was decided during the night and previous shift. Sun shook his head and walked out.


I thought to myself (with my sense of humour ;O)” I wish I was a fly on the wall during that medicine round, hahahhaa ;O). If anything has helped me in my life, situations and stress, it is my blunt, silly, somewhat sick ( might be to others ;O) sense of humour, I have found that humour can be used in most difficult situations (of course there are grave no nos) but the situations we have found ourselves in, a quick line here and there can make the atmosphere easier and relaxes everyone, the staff that knows me (I hope) knows I appreciate a good laugh and a giggle and they do not have to carful what they say etc. That is how it is, what we survive we become stronger! And it can always be worse, there are always other that have it worse than I have it, that what I have been trying to think of often to not let my self-pity take over, even if we all ones and a while needs to and have the right to feel sorry for ourselves and have a good cry :O)!


Dr Thomas Higgins and Nurse Annika Maxedious (whom I now call “Laserwoman” ;O) came to make their research tests with ultrasound (scan), blood tests and Annika did her laser-test on James´s arm which measures the capillary flow ( yes do not ask me .O!).






I went down to have breakfast in the hotel. It was a calm day, James was asleep and had help with his breathing, so not much I could do really. I talked to the staff and read. Typically me, I read a true story novel. It was a horrible true story where a English couple had four children, three boys and a girl. The oldest, the girl survived, the baby boys died of sudden death, the girl also stopped breathing but she was saved. Not only that it only happened when the husband was away from home so the mother was accused of killing her babies of, but it was not true, she was isolated from her family, and thrown in jail:O(!!!!! A very good way to keep focus of my self-pity and to start thinking of those who has gone through worse! It was a “happy ending” though :O). Anyways, the embarrassing thing was the cover of the book, (thinking of sitting in PICU), it was a picture of her children’s tombstone on the cover. Everyone asked of course, “which book are you reading”?, and I had to show the cover. Hhehehehehe I could might as well put donkey on my forehead ;O).


Nigel came over for a little while, I told him to stay at home and work since it was not much he could do either. It was very nice when he came though, we went out to the kitchen because he brought some lunch for us, bless him :O)!


James blood-pressure went up and down during the way, they tried to get a balance with the medicines and fluid so it would stabilise. It was nothing uncommon though, we had known about this before.


James was extubated again during the afternoon and it all went well :O)! He needed to sleep though to stay as calm as possible.


James had a new little “girlfriend” in the room called Mirella. Her parents were lovely, we had small talks :O). I had a fairly early evening, since James was asleep anyways.

Monday-2rd of November-OP day :O)!

James & I walked down in the culverts to ward 67, we arrived at 6.00. I had the gear so I gave James his sterile bath myself. Clean clothes, “lovebly” hospital clothes ;O). Then the nurse helped me with the Emla cream (painkiller) on James’s hands and feet for all the needles they would need. James sat happily and (probably a bit confused) in the pushchair watched some dvds. At 7.50am the staff arrived with the sedatives, I was disappointed and felt stressed that Nigel had not been able to arrive before then. But I knew how hard it was for parking and all the kids need to be dropped off at school etc,and most of all I knew how disappointed Nigel would be if he missed going with us. We were supposed to be at OP a level up at 8.15, when the time was 8.10 the staffs was ready to take us up with the oxygen atc. I grunted to the staff jokingly that if Nigel did not show up in time for OP I would order moving cards ;O), hahaha. I looked out in the corridor and there Nigel came in a rush, phew! Some stones lifted off my shoulders. James was high on mighty by this moment in time, singing and entertaining and laughing in a drunk way ;O). When we took the elevator James was in the pram and two of the lovely staff followed us up in elevator, James still entertained us with his singing, I said we should have taught him, “what shall we do with the drunken sailor “;O). Finally we arrived; it felt really good I was not nervous anymore. Ann-Christin the anaesthetic nurse who assisted op nr 2 with James was there and other known faces outside the OP room waiting, I jumped into the “Mars suit”. Nigel snapped off some photos, he gave James a kiss, then James, a nurse from ward 67 and I followed the team to the pre room next to the theatre. James giggled, I put him down on the stretcher ,it was very warm and cosy, he had a toy, and they started to put in some needles in his hands. A nurse stood by James´s head. James kept on stretching back like an arrow to see the nurse’s face and said “HEEEEEEELOOOOOOO”. Hahahaha, we had lots of fun actually, it was like a comedy!!!! Yes, he had the hiccups as well giggling away. It took longer than expected I was probably in there for 15 minutes until Dr Valeria showed up, then James was quickly sedated and the nurse by James´s head took over his breathing. Before James fell asleep I told him, “Mummy Daddy loves you and we will be at your side when you wake up again, sleep well Darling” “you snuggle Buggle”(one of my mad expressions ),O). I walked back with the nurse to the ward were Nigel sat just by the door looking like he sat on needles, poor Nigel, at that time I was calm and had it “fun” with James before he was sedated, I told Nigel how James was before he was sedated and he cheered up :O).


We walked out to the hotel room and I gave Timothy a call, he was ill and was home alone, which worried me, since we did not know if he would stat having a fever.. Usually he is alright being home by himself. But this time he was not, he had caught a high fever, he was worried sick he had heard noises and been scared. Poor Timothy :O(!! Nigel and I discussed how we handled it best; I called back and said I was on my way to pick him up immediately. Timothy and Elliott were the only ones at home. Colin and Neville were at their fathers (because of the OP) since they were ill as well. We decided to call Elliott home from school, he had to take the day off. I called school and probably scared the living life of the teacher who answered, I felt stressed about Timothy and James. I drove home, it felt weird to leave the hospital knowing James was in theatre I looked at the time, 9.30, Sune had started his “plumbing” on our boy. When I came home I packed DVDs and things for the boys to play with in the hotel, they we because of the Pig flu not allowed in the hospital, only parents. Elliott came home, we were off. We went to the hotel room were Nigel tried to work to distract himself. Timothy´s fever had shot to sky high. Poor Timothy, he was so worried about James, it is not easy for the siblings either :O(! The boys looked on a DVD and put some of Elliott’s LEGO together. The boys and I went to the hotel restaurant for lunch, I knew it would be a looong day for all of us. Nigel did not have lunch with us, we all cope with stress and grief in different ways (Nigel already had a lot of pressure/stress on him from work before the OP) and this time Nigel could not cope so the boys and I had some time on our own. We all met up in the hotel room later and waited for the call. Sune had said he thought he would be finished at 13.00 pm at 2.00 pm he had a meeting. 13.00 past, then I started to count the minutes, thinking ok either a lot of scar tissue for them to go through which I had heard was common or something else, the something else concerned me :O(!!!!! At 13.40 Sune finally called, bless him :O)!!!All was fine, difficult scar tissue, phew, but when he reached the heart it was like on rails! James had very good pressure in his chamber. Thank God for that :O)!!!! Sune said his college now would close James´s chest and sew him up , Sune now had a meeting to go to. We all had hugs and kiss party. We had to wait 1,5 hour until we could go and see James; Before the surgeon was finished, James was at PICU (BIVA) settled in with respirator, all the medicine pumps connected with the “spaghetti” tubes going to right left and centre and they had him as balanced as possible, it takes some time.


A little sticker note ;O);BIVA in Lund is very international I must say ;O). James had a nurse who lived on Ireland for 20 year (Mary), another nurse who I heard had a slight Am accent(Susan) turns out she was an American living in Sweden for 29 years and a assistant nurse whose Mother was English.

We served the boys with movies they were a 4 min quick walk away and we could easily call them every hour and we did. James was beautiful despite all he had been going though :O)! Pink lips, PINK FEET (Now I can’t call him “Bluefoot” anymore, from “Stinkyfeet”, to “Bluefoot” and now “Pinkfoot” ;O), haahhaahhaaha ;O). We were ecstatic to see him!!! The staffs was working franticly, excusing themselves for doing their job. In the beginning there are a lot of adjustments, medically. Blood pressures going up and down, James waking too much and needed flushes of Propofol to sleep heavier not to fight the respirator too much etc. X-ray showed up to check James´s three drain tubes coming out from his lungsacks and heartsack.


Nigel had to go back home later in the afternoon, the boys and he needed tea and Timothy was not well at all. We called back to the hotel room often from PICU (BIVA). Nigel and I kissed goodbye.


After some time after Nigel had left they decided James could be taken out of the ventilator. James had been on an empty tummy since the OP because of the possibility of extubation. I have lost his name for the moment, but the anaesthetic Doctor came in when it was time. A very nice guy James had him in the past. One of the nurses asked if I would not be uncomfortable to see James being extubated (since I stayed by his bed as usual), before I was able to answer the doctor smiled looking at me “not her she is a veteran by now, there has been a bumpy road with James”, hahahahahaaha ;O). Anyways, he pulled out the tube and as always it was difficult for James to begin breathing with flam in the way of breathing correctly, some inhalations, oxygen in place. I was happy I could be there to calm James with my voice and pep him a bit to fight though, but ouch can it be something more uncomfortable to be intubated or extubated :O(??!! Poor James, but a necessary evil. They put a nose thingy with oxygen up his nose, I said it will not work never has been. James had less Propofol now and was more awake so he could breathe on his own. He was very worried since he did not want to have this thing up his nose. They started using a normal oxygen cone but his saturation dropped too much, they wanted it over 93%. The brought the Penguin-mask of course, James´s old “friend”. It work, he did not lik it but much better than the other one :O)!.


I asked the nurse about James throat, it looked like he had a swollen collar around his throat. The staff said it looked odd (which made me slightly nervous since these people had seen most things ;O). They put it on record to keep an eye on it.


New thing to this operation was a painkiller balloon with a catheter going up to James wound in the chest. This balloon had a special pressure giving James local painkiller in the wound; they had seen it had lowered the heavy drugs. In James´s case it did not seem to make any difference, they had to flush Ketogan (morfin) often to calm him. He many time took his hand on his chest saying (ooooooh), bless our wee boy :O(. Anyway they flushed when he neded extra. James was calm at 22.30, I was dead beat tired, it had been a loooooooong day! I said to the staff to please call me if there was anything with James. I kissed him “night ,night” and to have it “snuggly buggly” ;O),”Mummy & Daddy loves you” as usual.

Sunday- 1st of November

Finally it was time :O)!Nigel followed us to the hotel, with James, camera bag and all the other packing I needed help. James was already finished for bed. James was all exited he had his own bed to jump around in. James was up way later than I expected even if he did not have a nap after “lunch”. Too exiting to sleep in a hotel, like a slumber-party forJames ;O). James was allowed to have Infantrini (milk/formula with extra calories) until 2.00 am ant then water until 6.00am.

Blog will be written soon :O)!

Hello everyone Nigel and I shifted places for a couple of hours :O). James is doing great and the blog will soon be written I have only had time to write reminders, what happened what day etc. James has pink lips now but mostly you can see it on his feet, we cant call him "Bluefoot" as often anymore ;O)!  Thank you for ALL your support; smses, guestbook messages, emails, phonecalls and Malmö Brass Band for dedicating  the first piece "Angels are watching over me"  on their concert to James, it is overwhelming , you cry for less :O)!!! It all means the world to us :O)!! Thank you for all your prayers. Thank you all heart child mummies who has been very concerned and showing your love, I know how worried you become when someone elses child is under surgery etc it is very close to heart!! THANK YOU ALL!! If you go to http://www.jamesward.co.nr/ and look under galley there is some snapshots pre and post op so far :O)!! Just to show you some for now. I am back with James in hospital tonight.
 Lots of love, Malin

We are off to the the Hotel by the hospital :O)!

With some butterflies in my tummy we are now off to the hotel by the hospital for the night. James and I need to be at ward 67 at 6.00 (5.00 UK time), I have just given James a steril bath and there will be another one in the morning, painkilling cream on James little hands, some calming drugs, fully sedated at 8.15 at OP , Sune starts with his magics at aprox 9.30 and he thought he would be finished at 13.00. So keep your fingers crossed :O)!

God bless our little boy!!

Lots of Love, Malin

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)