A few days of respite

Believe it or not, but we were released from the hospital yesterday!
Peeper has been an outpatient since Thursday and, that's when we finally started to see some real change in his neutrophils. Friday when we came in to get his daily dosage of antibiotics, which had to be given intravenously, his neutrophils were at 0,2, which meant that they were up one unit from the day before. Still not good enough to start taking the antibiotics orally, the magic line is at 0,3, but still a heck of a lot better than before. Saturday however, they were up to 0,5 and, just like that, we were finally released.

it's easy to see that he's feeling better; he's playing again! And he's eating! Almost a whole carrot for lunch and, almost a whole dl of hot apple cereal before bedtime today and, he's even helping to put the spoon in his mouth. In our new normal I've had to constantly try to distract him to keep him from turning his head away, pushing the spoon out of my hand or, just plain refusing to open his mouth, so this is wonderful to see. on top of that he's of course nursing as usual and, I'm so thankful.

It's gotten me thinking of perspective again.

There's so much that we take for granted...

Even those of us who have experience loss...

We worry and agonize over potential harm to our little ones a lot more than others, but I can honestly say that nothing could prepare me for being forced to have to tube feed my 8-month-old, or to be grateful for every spoon full that he willingly puts in his mouth. It's nobodies fault... It's just the way life goes...

He's going back in tomorrow for some more blood work and, after that the final decision can be made on whether he will be capable to go to Stockholm for his second round of chemo or not.

It'd of course be best to get it done on time, so that the tumors are kept in check, but I doubt that they'll be able to go through with the EUA, cause he's still got a terrible cough and, I can feel the phlegm moving around in there if I put my hand on his back when he's breathing. It's still only in his upper Respiratory tracts and, the antibiotics he's taking now will cover a potential bacterial infection, which at this point with his immune system being so week could turn into pneumonia from one moment to the next, but where things stand right now they cannot give him any anesthetics...

Hopefully it doesn't take all day tomorrow. They screwed up the tests Saturday so we didn't get out of there until after 5 o'clock. .

The nurse from the day before put a little bit of Heparin too keep the blood from coagulating in the line. She said it's only necessary if one is going to wait for more that 24 hours before one uses the portacath again, but since he was going to have the antibiotics once a day, it was right on the edge and, if they got a little bit delayed it was better to have it in there than taking the chance of a blood clot.

This proved to be good thinking, since we cane in at 8:30 in the morning, but had to wait around until after 10 o'clock before they had time to hook him up to the IV.

With medication in the line, the nurse who takes the blood samples always gotta draw a bit out before the so to speak useful blood becomes available. I don't know if it was that the nurse from the day before didn't put in his file that she gave the Heparin, or if the nurse who took the samples hadn't read it properly, it wouldn't be the first time, but the blood that was sent to the Lab was too diluted to give accurate results. Something that became obvious when his red blood cell count came back at 48, a rather alarming number...

This was found out around 2 pm or so way after he's drip of antibiotics was done and, since they don't want to use the portacath unless it's absolutely necessary, especially not now that he's so hyper sensitive to infections, they had to prick his tow instead, which sort of counter fits the whole idea with the portacath... Part of the reason for him having it in there is to spare him all these constant pricking and poking with needles.

Believe it or not, but he didn't even say a peep. We had brought a new book for him with animals and with buttons which will produce the sound of the animal in the picture when pushed and, he was way to preoccupied with that to care what they did to him.

I'm glad it didn't seem to bother him, but at the same time it breaks my heart, cause it means that he is now so use to this that he has adjusted to it and, raised his tolerance level to a point where most adults I know would be complaining and,, noisily at that.

Anyway, after that it took another 3 hours before we finally were out of there. But we will at least have a couple of nights in our own bed, unless something unforeseen happens, before it's time to go back to the hospital again. A few days of respite before the nightmare can start over...

MY LITTLE KANGAROO-CUB

Everybody around us has been wonderfully supportive through the beginning of this ordeal and, I'm thankful to be surrounded by such caring and loving friends and family.

Little Peeper's God-parents got us a Babybjorn Comfort Carrier right before we went to the children's hospital in Stockholm, so that we wouldn't have to bring the stroller on the train. There's really no good place to put a stroller on there, at least not if one is a bit skeptic to believing in other people's honesty, something that I'll admit I gave up on years ago.

I prefer to be able to keep my belongings close by at all times when I travel, especially after the time when an old lady almost got away with stealing my suitcase, containing pretty much everything I owned at the time, or at least all that I could carry, including 2 weeks worth of clothes and, my beloved laptop.

I had been abroad participating in a tournament and, after that I had visited with friends, so I had been away from home for a while.

Alex had been staying with my mom and, the train I was on to get home was gonna make a stop at a station near by where my mom lives, so she was gonna put him on the train so that we could go on home together.

It was only luck and, my observant 10-year-old which allowed my mom to catch the thief. Had she attempted to steal it at any other station along the way, Alex would never have seen her and commented on that the lady had mom's suitcase...

My mom of course just thought she had one that looked like mine, but when Alex joined me, we went to get the laptop out and, discovered that my luggage was gone. I called my mom and, she just yelled that she saw the witch who took it and, then she ran...

The witch in question appeared to have been collecting stuff both here and there, cause she had a million different suitcases, backpacks and bags to drag around, which was good for us, cause she hadn't gotten very far.

At first she tried to hold on to the suitcase and say that it was hers and, when my mom said that it belonged to her daughter and, pointed to the name tags which were left on there from the plane ride, she tried to say that I had asked her to get it off the train for me and, then I had disappeared. Still she would not let the suitcase go, but she got scared when my mom mentioned the police.

We should have reported her anyway of course, but my mom's main concern was to get the suitcase back to me before the train left and, by some kind of providence the departure had been delayed so she managed to hand it over right as we were getting ready to leave.
Meanwhile the lady had of course disappeared, so there was no point in calling the police; after all I had gotten it back, so they wouldn't waste their resources on trying to find the thief. Anyway, this is why I don't want to bring anything that can't be stored above my seat on the train.

For that reason and, many more the Babybjorn works great for us, I totally love it! He doesn't feel heavy at all to carry around for hours and, he loves to be that close to me all the time. Except when it's windy or raining outside of course...

There's no easy way to protect him from the wind and the rain blowing in his face and, the first time it happened he got so scared he was shaking all over before I could turn him around so that he was facing me instead of facing forward. But with the way the wind is here on the west coast, not even turning him around keeps him completely sheltered from the weather.

There's a cover one can by extra that'll keep the baby warm and, protect against wind and rain, but to be honest we can't afford it right now. We weren't rich before this ordeal started, but the traveling back and forth to the children's hospital in Stockholm and, the living expenses up there is not gonna help matters one bit. The medecins aren't cheap either even though I know that we can thank the stars above that we're living in Sweden where health care is a lot more affordable than in many other countries...

Sorry, I'm complaining a lot, but the reason I have a blog is after all that writing allows me to vent as much as I want to so, I'll just go on complaining a bit more thank you...

Our little Kangaroo-cub turned 8 months this past Wednesday.

I read other rainbow baby blogs and, there are of course some rainbow babies who are the same age as our little one, who I up until now have loved to read about. But right now I'm at a point where I wanna comment on all of the posts I read, telling all these mothers, who have already suffered the loss of a child, to enjoy life while they can, cause tomorrow their precious little one may be diagnosed with Cancer.

I wanna tell them to hug their children while they can. Enjoy that they're developping normally, in their own way, while they can. Be grateful that they fussed all night because of colich and not side effects from chemo...

I feel a little bit like I did after I lost little Andreas. I envy all mothers that they can right down their babies new abilities while I'm forced to watch my baby being less and less interested in anything but being carried around in my arms and, at the same time I feel like a horrible person, cause these mothers don't need reminders of how fragile their happiness is...

I keep telling myself that I'm still lucky in a way; I have my little rainbow here still. My arms are not empty this time. Life just diddn't turn out the way I wanted it to... But I feel robbed just the same.

And always... Always... There is the fear of losing him... Of being left with arms aching to hold, a longing to care for, and a heart overflowing with love, but with no one to give that love to...

We thought we would get released from the hospital as an 8-month birthday present, but Unfortunately the delivery to the pharmacy had gotten delayed and, we still could not get his anti-nausea medication.

We got to go home over night though and after spending 8 days in the hospital in Stockholm and, then only getting out of that one to end up in another hospital for 5 more days 20 hours later, I kind of felt like I was being released from prison.

Our little kangaroo-cub was happy to get out of there as well, It was easy to see by the way he was smiling at everybody when we were leaving. I carried him out of here, but he was quite happy to be in the stroller as well once we got outside. We walked home of course, we can't take the bus now unless it's absolutely necessary, not with a baby with a week immune system. If one wants to catch a virus of some sort, that is probably one of the best places to hang out.

Little kangaroo-cub is by the way his new nickname in addition to: "little Peeper," and, "little Squeeker." Little Peeper is being used a lot more again, cause he has started to make little peeping sounds again, just like after he was born. Kangaroo-cub came about cause now that we got the Baby carrier, that's where he wants to be, all the time. Though I guess it doesn't matter to him whether he's in my arms or in the carrier as long as he can b close to me and, that's a kangaroo-cub for ya.

It's really sad, cause he was getting rather independent there right before we started the chemo, but with him not feeling good all the time, he has not really tried to crawl during the last week or so and, he almost loses his balance when I try to let him walk now. Just holding on to my hands like before is not enough, I have to hold him up under his armpits.

He has always loved jumping up and down, even when they gave him the chemo, it was hard to get him to stay still and, to keep those little curious fingers away from needles and lines. But perhaps that was just a trick of the blood transfusion... I don't know...

All I know is that I want my old little bundle of energy back.

He is better now and, that is something to be grateful for. But he is not back to normal and, I wonder when he will be and, how much this will set him back. In just 10 days it's time for another round of chemo and, I just wanna cry...

He is enjoying toys again especially the keyboard they have in the hospital, but he plays too quietly now. How I wish my arms were tired from helping him jump up and down again...

He's in pain a lot of the time and, he ate almost nothing for several days, he's got some catching up to do, so of course that takes it's toll on him. It's not that I don't understand that... I just wish things were different...

Memento mori

I was talking to a friend who I hadn't talked to in a long time this morning and, as usual at such occasions she had to update me on all the latest gossip about old friends and acquaintances.

"And what about Sari? Has she had her baby yet?"

Such a "normal," "ordinary" question...

a question that I use to ask while preparing to close my ears for the next 20 minutes as soon as I had gotten a "yes" or "no" answer.

A "no" always meant a detailed description of how the mother to be was going crazy cause the baby should have been here days ago and, how many stretch marks she was gonna have because of this, how swollen her ankles and wrists were and, how often she had to run to the bathroom to avoid having an accident, etc, etc. Never for one minute pausing to take in how lucky she was to carry a healthy, live baby inside of her.

A "yes" on the other hand, meant a detailed account of all the different stages of labor and, quite frankly, I was never very interested in that sort of thing, not even after having Alex and, after losing Andreas I just didn't want to even think about labor again.

Don't get me wrong. I understand wanting to share the experience as a whole, the worry because the baby was in distress and his or her heartbeat was irregular, the anxiety cause the baby was posterior, the umbilical cord was around his or her neck, or just plane fear that something would go wrong, for no reason and, of course above all, the overwhelming joy of holding the little one for the first time - all those things that matters. I just never cared for the gory details.

I never felt the need to try to turn my own labor into the entertainment of the girls night out, for the same reason I didn't turn those hours of pain into a tea party with friends and family invited - it's not really that entertaining at all.

It's a perfectly normal state and, something that one has to go through with as much dignity as possible - no unnecessary screaming, no being mean to people just because one's in pain and, no other crazy drama either...

Nobody said it was going to be pleasant, but on the other side of it, if you're lucky, you're gonna have the most wonderful reward ever - a beautiful little bundle of joy, making you the happiest woman in the world.

That's the part I wanna hear about... A happy mother with a wonderful, healthy baby, not how many centimeters the mother tore while pushing out the baby's head...

I haven't changed much when it comes to that part of and, I realise that I seem to be alone when it comes to these views. It may be because I have issues; who knows? But when women tell me that they screamed there way through the whole thing or, that they told everybody around them to go to hell or things like that I'm just amazed and yes, a little disgusted; how could they humiliate themselves like that?

But, like I said... Probably my own issues...

Either way, I stopped taking a happy ending for granted years ago...

For a long time I was always expecting bad news when someone was pregnant. Not only did I myself lose my little Andreas in 2001, but my sisters best friend lost her daughter, little Mikeala, that same summer, just days before she should have been born. Shortly after that my boyfriend got a phone call from his ex in the middle of the night and, she had just lost her son, Matty, the same way.

But years have passed since then without anything going wrong to the people close to me, except for a few miscarriages in the first trimester.

I know that there are those of you who have tried for years and, who have to go through miscarriaged, after miscarriage, after miscarriage...

I don't mean to take away from your pain.

I'm not trying to say that early miscarriages don't count; they do and, I know that that experience will make you unhappy as well. I had one in 1999 and one in 2003, so I know that it is devastating.

But I will still tell you that they are easier to deal with both physically and mentally than a late one.

Just as I'm certain that a late miscarriage is easier to survive than losing a child that has been alive an breathing in your arms.

It is not in any way a comppetition and, there is little consolation in that "it could have been worse" when it happens to you.

It's still a loss. Still a broken dream. Still a little person you'll never get to know. A little baby you'll never get to hold. But it is, in most cases, easier to move on and, try again. Especially for the world around you.


Having my little rainbow baby has brought me so much happiness in spite of all the worrying about cancer and, it may be that which has somehow made me fly so high that I forgot for a moment how deep the abyss was and, how easily I could fall back down again. All happy people are selfish...

I suppose in a way it shows that time has done it's job and, healed the wounds at least on the surface.

Although I constantly read about so much loss and unhappiness, I also read a lot of things that gives me hope and, it seems I don't always automatically expect things to go wrong anymore.

But I should have known... Shouldn't have closed my mind to the whisper: "Memento mori..." "Memento mori..." "Remember your mortality..."

I just wish I didn't have to realise that, when the "normal", "ordinary" question suddenly is hanging there between us like a snake getting ready to sink it's poisonous fangs into my stupid expectations.

It is a poison I know well... A poison made of the darkest sorrow, of broken dreams and, the tears of broken hearted mothers. It takes on various names and shapes such as: Dread, Bitterness, Doubt and, Despair and it will once again spread that numbing pain throughout my body and, devour the courage I need to live. It'll once again make me afraid to love, for fear of losing the loved one...

Suddenly I want to hang up so that I don't have to hear it, so that I can keep denying it and, pretend that there's hope for a little bit longer. But of course I don't and, there it is...

"I thought I told you... she lost
her baby boy at 25 weeks jestation..."

relentless fear

"Is this *'s mother?" Asks a slightly familiar voice on the other end of the line.

"this is her."I confirm.

"This is doctor *** who did the eye exam on your son a while back and, I have spoken to a specialist about his case."

- "A specialist? why, I thought they were sure there was nothing wrong with him." Why do we need a specialist all of a sudden? My thoughts are chasing each other like those dark dirty clouds which sometimes blows in from the sea to block out the sunlight with in seconds. Except this time they're just forming one vile word across the blue happy skys... cancer...

"The doctor recommended that we examine him again as soon as possible just to make sure that we didn't miss any signs of Retinoblastoma and, we'd like him to be sedated during the procedure." Her efficient professional voice continues, unaware of that every word is crushing into my world like a zunami and, that suddenly I'm drowning in memories of a little tiny body, straining with one febal attempt to live, before it relaxed and went to sleep forever.

- "He can't have the Retinoblastoma! You said there were no signs of tumors in his eyes! That there was no reason to worry... And sedated at 5 months?!" I want to scream at her.
"Babies die from such procedures. Doctors make mistakes... And babies die! He's too little, you can't do it yet... don't you understand that I can't live without him?!"

We're just now getting into a little bit safer teritory, so that I don't have to hold my panic at bay by making sure that he's breathing every other minute.

Most cases of sudden infant death syndrom happens when the baby is 3 to 4 months old. And he is finally almost 5... Almost...

'it doesn't matter that
i know that
i don't haveany more reason to worry about SIDS than any other parent of a premature baby.'i'll always worry now... Cause now i know that babies die.

We all know that of course. But it's because we saw it on tv, read it in a book, or because it happened to a friend of a friend. For the compassionate ones it's reason enough to shed a couple of tears and, offer their condoleances, the rest look the other way and say nothing at all...

For me, it also use to be reason enough to check on Alex quite often too make sure that he was breathing. But
i never really let it in. But perhaps that's just not possible until one has felt the body of one's child turn cold and, been forced to realise that no matter what one did, nothing could be done to keep him warm. No matter how I prayed for a miracle...

But of course I say nothing of this... I just ask her when we should schedule the procedure and, she tells me that a nurse will contact me to set it up with in a month.

We hang up and, I hold my sleeping little miracle closer. And I cry...

Tempting Provedence

Last time Michelle was here, she brought a lot of clothes which Elias had outgrown again and, all the ones she brought us the time before were too small for Peeper already, so the timing couldn't have been better.

It's really saving us a lot of money, so I'm very grateful that Peeps has a cousin who is just one month older and, of course that I have a generous sister, who wants to give away his old clothes.

She knows of course that it works both ways though, something that's easily proven by the fact that some of the stuff she gave us was Alex's once upon a time 14 years ago... Some of it can even be traced all the way back to my youngest brother, Benji, and my niece, Nathalie, which means that it's at least 20 years old and, it still looks nice. Now that's what I call quality.

Michelle says she's not going to have any more children, so she's giving all the baby clothes away now, but she makes sure to save all the things that may have been Alex's for me.

I really appreciate that. it's nice to be able to put some of those clothes on little Peeper. I gave everything to my older sister's baby 10 years ago, since little Andreas wasn't going to be able to wear any of it anyway. They would have been... Should have been... The same age. Should even have been born the same week...

Sometimes I feel Like history is repeating itself and, giving us a different outcome. Almost like it's trying to make up for the past.
10 years after those weeks of agony and, the ever present void that followed, when just one of the cousins was allowed to stay with us, two little cousins are both safely brought into this world. Two little boys the same age who can become perfect little hellions and drive their parents mad together... Or make us happy beyond words...Two live and healthy babies. Two, this time... Not just one... Noone left with empty arms and a broken heart... Two... Finally bringing some healing...

Though I can't help but feel that I'm tempting fate just writing that down. Yeh, even just thinking it...

A little guy in need

I recently found this blog about a little premature boy who's been fighting to come home to the safety of his mom's and dad's arms for 4 months now.

It has made me happy to read about his progress and I've been waiting for the post where I'd be able to read about his first days outside the hospital with the same anticipation as I once felt while waiting for the the twins to be born when I was expecting Joshua. It has given me hope in some inexplicable way.

But things are not going well now and they're not really sure why.

It breaks my heart and I cried when I read the last update about him:
Alexander Merlin: September 1, 2011: Things here are not going well. After the weekend, the CO2 in Alexander's blood went way up. The doctors were unable to get it back down on ...

In a different life, with a different outcome, it could have been either one of my children laying there, struggling for every breath...

Especially little Andreas, who never got the chance to try, because they told me his lungs would have failed anyway. I'll never know if I did the right thing by choosing not to let him suffer. Sometimes, the doctors are wrong you know....

Still, I have to try to hold on to the thought that it would have been so selfish of me to let him die a slow agonizing death just because I didn't want to accept that he didn't have a chance. The right thing to do was to let the doctors help him go as easy as possible. Or wasn't it. I'll never know...

My heart is breaking for this little guys mother. If there's any way I can send her and her beautiful baby boy strength through my thoughts, there's lots coming their way.

Hours of distress

So we had to take our little treasure to the hospital the day before yesterday, he just wouldn't stop crying. Well he did for short periods, but I've never seen him distressed like that. It was obvious that he was in pain and, after 30 minutes of that, B and I were crying too.
I had to take him in alone, cause it was laundry day here, and all our clothes were in the laundry room.

It took a while before we could see the doctor. There were just more severe cases that had to get higher priority. The nurse gave little Peeper painkillers and as soon as they started to have effect he fell asleep. But he kept waking up and crying and then when the pain subsided he fell out again. He cried, and fell asleep... Cried, and fell asleep...

Time moved so incredibly slow. It was like the seconds were stretching out somehow and, every single one of them felt like an hour at least. I remember the same feeling when I was waiting in the E R when Alex had pneumonia. If I believed in such a place as a hell, I' would be convinced that is how time moves there.

When we finally got to see the doctor, she couldn't find anything wrong with our little miracle, except that his belly was a bit bloded, but that, along with the way that he was crying, lead her to suspect Ileus, Intestinal obstruction .
So off we went to another E R, the one for X-rays this time.

We didn't have to wait that long over there though. Only 20 minutes or so. After an abdominal xray, they decided that they wanted to do a barium enemas as well.

Peeper was such a brave little truper the whole time. It amazes me how he, who lets the whole world know that he's mad if we put him down when he wants to be up, or if we hold him a certain way when he wants to be held the other, can endure laying naked in a cold room for several minutes, while they put him first this way and, then the other, to take pictures of his insides without so much as a peep.

It was the same for the next procedure, which was even worse, cause they had to put a little catheter up his butt to enable the liquid containing barium sulfate to flow into his intestine. Other than that he kept trying to push it out again, he layed there as if it was his every day routine.

Eventually he even fell asleep, but they said that sometimes, if there's an ubstruction, the liquid makes it feel better. Just letting the barium flow through the intestines can actually help remmody the problem.
They're not sure if that's what happened, cause they couldn't find anything. Though they said that it's hard to tell with these little ones.

They kept us over night for observation, and gave him painkillers. He slept all night, except of course for waking up to eat once every 2 hours or so. At least they said that eating that often is quite normal if one is breast feeding. But at the same time they said that his pain may have been due to eating too much, since he gained 200 Grams over night. I'm wondering if that could be that he still had a lot of that barium left in his intestines though, cause there's been a lot more than usual in his diaper.

Personally I'm convinced that the barium helped, cause he's a happy little baby now and, barely cries at all.

He even allowed B to hold him and, seemed quite happy about it too. It's been a while since that was possible. Personally I think it's way too early for him to be watching tv, but his dad is of the opinion that a couple of minutes of "Beauty and the beast" never hurt anyone and, I have to admit that they're awfully cute watching it together.

Never enough minutes in the day, but a healthy baby at least :)

It's been a while since I had the time to sit down to write a post on here. little Peeper still feels that he needs to eat every 2 hours or so and, sometimes it's even more often than that. But at least he has days when he'll sleep a little bit more and when he'll even allow me to put him down for a nap in the cradle or straller.
For the most part however, he just wants me to nurse him and, he wakes up just as soon as I move just a little bit. Now if he realises that he's dropped the nipple at those times all hell breaks lose. He'll cry if I don't nurse him, and he'll cry if I do, probably cause he's been eating too much and his little tummy hurts.

Going for walks use to be great for getting him to sleep, but now he just wants me to carry him even when we're out dores.
Everybody's trying to tell me that a pacifier would solve our problem, but he doesn't want one. He sucked his thumb from time to time during the first couple of weeks, but it doesn't happen very often now.

I've been trying to help him out by holding the pacifier in his mouth for a while, since I figure it takes a different kind of technique than when he suckles. On a few occasions it has actually worked, but then it's like he realises what's going on and he won't take it again after that. He'll either just keep spitting it out, or he'll get mad. Well and when he gets mad he Screams with a capital s, Or lets just capitalize the whole word, he SCREAMS!

It sounds like we're trying to murder him at the least, which pretty much rules out the other advice I've been given to deal with the situation. I can't try to draw it out and make him wait for about 3 hours between meals. I promise you that my neighbours will report me for child abuse if I don't nurse him when he wants me to, cause he just will not stop crying.

I know from the times when we've been forced to wait. Like when T came for a visit, which by the way was a good time in spite of the trials and tribulations of our poor little baby dealing with colich at night. .
I could have done without the hours it took to pick him up at the station however. That definitely falls under the category "trials and tribulations" as well.
Peeper woke up hungry as soon as we got to the station and it wouldn't have been a problem, but the train was of course late. I figured we could just go have a little something at Expresso house and I could nurse him in there, but they close at 8 PM, so we had to get up and leave before he was done eating. T's train got there right around that time, but we had just missed the bus, so we had to stand around for about 20 minutes and wait for the next one. Then it's another 20 minutes to get home.

I always feel like people are staring extra at me in those situations too, since I'm blind you know and, in fact I'm sure they do. I hate it! I've almost given up on going places for that reason, cause now that Peeper cries so much, he gives them even more reason to look at me and wonder what that blind woman's doing with a baby.

I fear I'm about to just lose it the next time some well meaning, exceedingly stupid individual walks up to Alex and tells him that they're so impressed with him now that he's obviously taking care of both his poor, blind parents and a baby.
When it doesn't make me wanna tell them something exceptionally rude, which i admit is most of the time, It always makes me wanna tell them that they're exactly right. He's such a miracle kid really! You know he use to push himself around in the straller, change his own dypers, dress and, feed himself when he was little. Hell when he was 3 weeks old he was already leading his poor helpless blind mother around. Seriously; who do they figure took care of him?! It's doubtful that they'd pick up on the irony though...

Anyway, I haven't slept much lately, as I'm sure you can tell. After I got the carrying shawl things got a little bit better for a while. They didn't have the one they recommended at the nicu, but Aldoria Bambu Soft works just as well as that one. I even got a chance to work a little bit on the new poker scripts and write a couple of artickles. He was content when he could be that close to me all the time. I can nurse him without taking it off and, we can be skin to skin. We can still do that, but he's getting so big now that I can't really be on the computer when I have him in the shawl anymore. We just can't sit confortably. It's still great for carrying him though.

We even got a chance to go to the Helsingborg festival and, Even though there were indians, mexicans, and sweeds for that matter, playing live music along the way, Not to mention thousands of people talking everywhere, he just slept through it all.

we were walking around down town looking at things for quite a while and, we even stopped to buy some things, but he didn't even stirr. that is, until he got hungry... Unfortunately, there were so many people everywhere, that I couldn't find a place to sit down and feed him, so we had to wait until we got home . He cried all the way and I swear I could feel my hair turning more and more grey for every second he had to wait. No more festibals for us for a while...

I know that this is partually my own fault. I should probably have been more persistent when it comes to making him sleep on his own. But during those first weeks in the hospital and, later when he had that terible cold, I just wanted to give him as much skin to skin time as possible, so that he'd want to stay with us. I felt as if I would die if he did, and I just wanted to hold him and squeeze him and never let him go.

I can spend hours admiring him, being mesmerized by his perfection. His velvety soft hair, which feels almost like a peach. His perfect little ears. His little baby feet which have a skin so soft i just wanna kiss them. They tell me he has beautiful dark blue eyes. I wish I could see them.

There was never any immediat danger of him dying, but I was just so afraid to lose him. I still am. It makes me cry sometimes. I can't help it. Having him makes me so happy and, I'm so scared that it's gonna be a trick of some kind, though by who I'm not quite sure. But sometimes it feels like I'm just waiting for something to happen that'll take him away from me.

All tests have turned out well in the end though.
He failed the third hearing test as well, so the audiologist had to give him one where she put little electrods on his head to measure the responses from his brain when she played sounds in he's ears. It proved what I knew all along though; there's nothing wrong with his hearing. Though I'll admit that there were short periods when I was freaking out, cause wouldn't it be the hight of irony for the blind parents to have a def son. And how would we communicate... There are ways of course, but it's a life I'm glad he doesn't have to face.

The most important test, well or check-up I guess, did however take place at the eye department and, there's no signs of retinoblastoma, the eyecancer that made me blind.

There's not suppose to be any heridity in my case, since the gene mutation that causes it doesn't run in my family, but I understand that the risk of passing it on is higher if one's had the cancer in both eyes. In families where several members has had the retinoblastoma there's a 50 % chance of the children carrying the mutation that could develop the tumors in the retina.

I had some genetic testing done when I was 12, where blood samples were sent to the U.S, and, the doctor said that I would not have to worry about my children getting it, but later another doctor told me that there was no such test that could say with any certainty.

The children who have the mutation generally develop the cancer before the age of 6, but they're most commonly diagnosed between 1 and 2 years old. As long as they catch it early, almost all can be cured, but if the cancer gets a chance it can spread to the brain, bones and lungs.

I'm not taking any chances, so I'm having them check little Peeper every year until he's 8 years old, just like they did with Alex. Just to be on the safe side...

To end this super long post on a funny note:
Little Peeper even allowed T to hold him for a while. Things were going so well in fact that I figured I could leave them for a minute and use the restroom. It dodn't take but 20 seconds before I heard a howl from T, followed by another one from little Peeper. The little one had find the perfect time to blow up his diaper. I'm still not sure who was most horrified after that insident, but I suspect that Peeper may have second thoughts next time T wants to hold him. That is, if he can be persuaded to do so...