Krakow for the day

So yesterday we went to Krakow. Met a wonderful professor who spoke exellent english, she took her time to explain things thoroughly and answer my many questions in regards to previous results. We are now looking at antibodies to different pneumonias and other illnesses, she suggested that although the IGG subclasses and overall IGG was ok (a tad low but ok) that maybe perhaps the issues is that the immune system , although it has what it needs, doesn’t function normally when there is an infection, she will follow up with us once we have been to Rabka. She even gave me her personal mobile number. Such a relief.

We came home, and I was so tired I ate and went to bed with the kids at 8pm! Probably a good thing as I wont be getting a bed in Rabka! Ha.

I need to say that I have been so surprised by the lack of negative attention we get from A wearing a mask, I expected stares etc, but we have had none of it! Some looks, yes sure, but accompanied by smiles, nothing else. Infact, yesterday in the Krakow hospital a man came running after me to ask where I got the mask! She was wearing her pink minnie mouse mask at the time. I am so glad we got them, it was the right choice for sure. And the immunologist agrees she should absolutely wear one in crowded places until we have a firm diagnosis.

I wish I had been able to help the man with finding them, he spoke no english and me explaining etsy in Polish may not have been very successful! Good luck to him, poor family feeling that they need one. Makes me want to give him a hug.

-Linda

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Keep your germs to yourself!!

Its not easy to blog when your stress levels are through the roof. I don’t really feel so stressed but the fact that I cant focus on anything and feel like I have ants in my pants tells the real story. 6 days until Krakow hospital and tests there, then the lung hospital in Rabka. Its like – yet again – our lives are on hold while we wait for this. Celiac kid wears a mask out now and we take a thousand and one steps to ensure she remains un exposed to crap.

Have you ever noticed that people in supermarkets tend to cough straight out in to the air without covering as if they were home alone? In malls its the same thing! Or even worse, they cough over their shoulder and the cough germs lands on the poor unsuspecting person behind them!

The other day in the pharmacy the lady at the till was so obviously ill (coughing, sneezing, and generally spreading germs) that I actually walked out. I mean YUK! And, COMON!!!

I have now become like this grumpy old woman, because while I cant run up to these people and punch them in the head I can show my annoyance with loud comments of YUK and “eeew, Celiac kid did you see that disgusting lady coughing without covering?”

Shameful? Not for me, I assure you, but hopefully for the germ spreaders. You notice a lot when you live like this that you may not otherwise see. Like the lady in TK Maxx two days ago picking up the tea packets and smelling them, but I mean really smelling them, her nose was touching each packet and stayed on the pack while she obviously enjoyed the smell, pack after pack until her nose germs was on like every single one! I was trying to stare as evilly as I could as if my staring would shame her to stop. I mean, is it really normal to do stuff like that? Or am I uber sensitive to peoples germs all of a sudden? Im sorry, but I wouldn’t want to buy that tea ever in a million years after seeing her do that. What is wrong with people?

Even with a mask on and me providing hand wipes and alco gel constantly, it just seems that most people are so disgusting when they are out shopping that going out is just super dangerous. We can avoid parties and crowds fine, but we have to buy food!

Next time you go out to shop, cough in your bloody elbow please and don’t TOUCH stuff with your nose!

eeeew.

-Linda

The masks are from Etsy and can be found here 🙂

Everything happens for a reason…. right?

Not going to update you all on speculations. There are many. When I asked our doctor if they would find it this time the reply was ‘we are not letting you go til we have’. Feels good, reassuring. I cant wait now to find out, I cant wait so that we can help her.

This last pneumonia scared the living daylight out of me…. at one point we had 12, yes twelve doctors in our room, from ICU, pulminology and immunology, all trying to figure out what to do with this tiny weenie little girl who kept going lower and lower with her oxygen levels.

She didn’t speak for 4 days, then on the 5th day small words came. Day 6, finally sentences. Im in bits now. I wasn’t then. I was the calm and collected super mum, always am. After… thats another story. Day 8 we went home. We have enough medications on the dining room table to run a small clinic.

So now what? We wait, we wait for test results on the IGG subclasses (other fancy terms no parent ever should need to learn!), then once we have those we go to Rabka, another hospital in the mountains, but with more advanced diagnostic methods, they may need to see the inside of her lungs (how the hell this happens I have no idea, Im scared to ask).

Then after that, unless we have a 100% diagnosis at that point we are off to Krakow to the immunology hospital there, who have diagnostic tools that they don’t have here.

Whatever is going on with pumpkin pie, its not her celiac. This crap, its something else. No stone will be left unturned, but the belief is that its her immune system, something I have been saying for a couple of years now.

I do believe everything happens for a reason, and if this is what we have been sent to deal with then so be it. We need to try to make the best of it and do the best we can to make life as “normal” as we can, for celiac kid, but also big brother who always ends up coming second.
And no matter what we are going through, there are always people who have it far far worse. Complaining wont help.
We are still lucky. We could be the far far worse people….

-Linda

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So here we are. Hospital stay number….?

Blogging in hospital. We spend so much time here so why not? I should have had a blog called ‘hospital reviews around the world’. Been in enough of them…….

So yeah, we are in again. Did another one of those crazy drives across town like a race car driver. May even have run a red light or two.

Bypassed the entire waiting room and got seen straight away. Super low oxygen levels will do that. Got admitted, obviously. Been here a few days now. Had a hairy couple of days where the threat of ICU and a breathing machine was very very real.

We have a new personal record in low oxygen levels, and celiac kid is not going back to school for the foreseeable future.

The immunology department are running tests now while we are here. We still don’t know what caused this pneumonia, a rare bacteria? The first lot of antibiotics wouldn’t work so a much stronger, third generation antibiotic was started.

Feels like being on a particularly scary roller coaster, but without the fun or thrilling parts.

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Anyway thats us.

Linda

Being in a gluten free cult……?

Its been a while since I blogged about our journey. I feel like there is nothing new, just more of the same….

Christmas came, we were all sick. Celiac kid had another pneumonia, older brother had a virus with high fever for a week, and I had a bad throat infection. Merry Christmas to us!

I finally got around to open our letter from Karpacz and make the next set of appointments, I just wasn’t emotionally ready until now. We already went and saw the celiac specialist, and he is convinced her Celiac is WELL under control and all her vitamin levels etc point to us doing a great job in not exposing her. He is putting the not growing down to long term use of steroids, and he agrees with the Karpacz specialists that there is probably something wrong with her immune system. We are now booked in to go to yet another hospital and run a series of tests there. If they come up with nothing there, there is one last specialist in warsaw that may be able to help us…. my stomach  my stomach is in knots just saying this. After being told about the next hospital stay I felt like I couldn’t breathe for two days, I was walking around my house just trying to remain sane…. the stuff in my mind, the pressure, the thoughts whirling around… its unbelievable. How the hell do you stay normal through all this… how do people cope? 

Needless to say the whole family is under a huge amount of stress right now. Lost it with some idiot online the other day who called people who eat gluten free “part of the gluten free cult”. People really need to think before they speak. Such stupid, idiot remarks are totally unnecessary. Im pretty sure no one would say “insulin cult” about diabetics or “chemo cult” about cancer patients… nooo, because that would be offensive. Joking about Celiac and glutenfree should be no different.

My family have been through so much, we don’t need belittling by total strangers (or assholes!).

Im tired beyond belief. Not the kind of tired that can be fixed by sleep, but the kind of tired that leaves you spending a whole day just sitting and staring and doing nothing because you cant get your head together.

What else? Oh yes…. big brothers Celiac test came back. Inconclusive.

I mean, hello!!???

I actually had to laugh, its like some great big joke.

Big brother will now eat gluten for one more month with more added in as he may not have been eating enough of it, then we will do the bloods again and also the genetics and if needed the biopsy. He’s being brave, but he wants to stop eating gluten now because he says he feels confused. Im guessing he’s trying to describe brain fog? (A common symptom in celiacs). Either way, its all good, we just need to know for sure so we can do the right thing for him. Usually he eats 98% gluten free anyway, only has gluten at friends houses. Obviously if he’s celiac that cant continue.

So, thats my update.

Happy New Year!

-Linda

Ooooh, and we had snow and made snow angels!! 😀

Orphanages in Poland

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Yesterday I did something that was absolutely heartbreaking but encouraging at the same time.

I visited an orphanage about an hours drive outside of Wroclaw. As a mother, my heart was breaking in to a million little pieces. How can someone just abandon their baby? And even worse, an older child! A child who on some level understands, asks questions and wants to know why? It took me the whole day to try to get back to “normal”. The women who work in the orphanage must all have super powers, many are mothers themselves, and their hearts must be breaking on a daily basis.  They all deserve a medal. On a positive note, I was really surprised at how clean it was, the abundance of toys and happy colours, I had expected the place to be like something out of those pictures you saw from Russia in the 80’s or the pictures coming out of Romania after its fall. Far far from it. The children are well looked after, 51 children, 50 staff. They are in nice clean surroundings that look like a modern nursery or pre school. There are many many kitchens and children are split in to smaller groups for meals and activities with an “auntie”.

I also felt encouraged, because I really think we can help them. By we, I mean my children’s school, the expat community and people around us.

I felt compelled to offer this home my help many months ago, some of the children were at a school event concert and I couldn’t take my eyes of them. Gorgeous beautiful lovely kids, and someone gave them up! I cant adopt them all, but I sure as hell can try to contribute to making their lives easier in any way I can.

I am not rich, I cant do this on my own, but I have a voice and Im able to ask others for help!

There are hundreds of orphanages in Poland, with an estimate of 80 000 children being in care today. Some orphanages are large, like the one I visited, others are smaller family homes. The children in these orphanages are not necessarily orphans per se, some have been given up, some have been taken from their homes by police or social services, others are in state care while parents are in prison. Some parents just cant cope and their children go to stay in an orphanage for a short while before going back home.

Many of the children suffer emotionally, not just from abuse of course, but the older children from knowing that they were given up.

In this particular orphanage children stay on average 6 months to a year. Some however stay only weeks, and one of the longest staying residents stayed 3 years. The orphanage has children from birth up to 12 years old. Once children turn 12, they must go to a youth home. Siblings are kept together as much as possible. Sometimes they get 4 kids from the same family! In other cases they will get a new baby every few years from the same family….. heart breaking, and social services just cant keep up.

Adoption is under strict regulation in Poland. Law states that children put up for adoption must go to Polish families first. If a child is unsuccessful in being adopted in the first year, then the adoption goes global with people from other countries being eligible to adopt. Catholic families have priority, and then Christians (many of the kids adopted internationally are older and already familiar with religion and Polish tradition, so I guess this makes sense for them to do it like this). Children with health problems or developmental delays often end up being adopted to foreign families, as most Polish families simply aren’t interested or cant support a child with special needs.

There are also age restrictions. If you are below 40 you can adopt a baby, but each year after 40 is the age that the child can be, so if you are 42, a child must be minimum 2, if you are 44, minimum 4 etc. You can be 47 and apply to adopt a 5 year old, and they will look at your case, but generally the rules are not broken.

In the orphanage right now, there is a 10 year old boy with his 7 year old sister. They have been there for two years and have been up for adoption this entire time. They must be wondering what is wrong with them that their real mum and dad left them and now no new mummy and daddy want them either. There is also a very small baby with a cleft palate, (given up because of this??) and a newborn baby girl. HEART. BREAKING. 51 children. Fiftyone.

Generally the children WANT to be adopted, a child who is “not ready” to be adopted would never be adopted against his or her will. The match is made in Warsaw in the central adoption place, then the child and new parent meet a few times before everything goes through. Single women can adopt in Poland, but not men.

The orphanage gets a government grant every month, this money must pay wages (fees for speech therapists and special therapies, psychologists etc) as well as bills, water , electricity and so on. They also must buy anything they need with this money. Food, clothes, school equipment and so on. I asked if it was enough, if they ever worried about being able to meet the children’s needs, and the answer was yes. All the time.

Anyway, less of the heart breaking stuff and more of how we can help these kids!

Many church groups and organisations get in touch with orphanages and help them. They receive many many toys and books, sometimes people just show up and drop stuff, other times its sent in the mail. Clothes are needed at times, but at the moment they have what they need. Christmas was recent and apparently people are very generous at that time of year. I also dropped off a ton of clothes and shoes at my visit, thanks to those who helped me collect those.

There are many things that are always needed and rarely get given. I will give you a list in a minute.

I am getting the PTA in my school involved, and Im hoping we will be able to deliver them a monthly food delivery. Non perishables obviously. This should take some pressure off. If you are in Wroclaw and want to help, get in touch using the message function on my facebook page.

Things they need on an ongoing basis are:

  • Underwear (new)
  • Socks (new)
  • Bedding / blankets / towels
  • Nappies
  • Baby wipes
  • Baby toiletries, such as cream for sore bottoms, talcum powder etc
  • Pacifiers (dummies)
  • Washing powder
  • Cleaning products
  • shampoos and soaps for children
  • tooth brushes and toothpaste

then they are slightly short of and would need the following:

  • Dictionaries english / Polish
  • Books for learning in Polish, text books, not blank ones
  • paper for drawing A4
  • Colouring books

They do not currently need any paints, crayons etc, as they are overflowing, they also have more toys then they can store.

For foods they would like:

  • Pastas
  • Rice
  • Beans / lentils / pulses
  • Tinned foods
  • Baby food in jars
  • Baby formula
  • Long life milk
  • Other things that don’t expire to fast can also be added.

If you can help, let me know, I will be going at least once a month, possibly more.

If you want to help the orphanage directly you can, they have a website.

there is also a Facebook page

Do let me know if you can help! Thank You!!

-Linda

(And yes, I asked if they had any Celiac kids, if the answer had been yes I wouldnt have left without them!)

Edit to add: If you are interested in adoption in Poland there will be many steps to go through, adoption is free but there will be some fees involved in the paperwork process. A family is checked thoroughly before being matched with a child. Orphanages have no say in which family adopts a child as they do not deal with the actual adoption process.

1. Wojewódzki Ośrodek Adopcyjny w Warszawie ul. Nowy Zjazd 1 02-018 Warszawa tel. 22 621 10 70 22 622 03 71 22 622 03 72 e-mail: woa.warszawa@mcps.com.pl

2. Krajowy Ośrodek Adopcyjny TPD Krakowskie Przedmieście 6 00 – 325 Warszawa tel. (0-22) 425 46 77, 425 46 88 faks: (0-22) 827 78 13 e-mail: adopcja@tpdzg.org.pl

3. Katolicki Ośrodek Adopcyjny ul. Grochowska 194/196 04-357 Warszawa tel.: (22) 618 92 45 e-mail: katolickiosrodek@interia.pl

Having to eat gluten…..

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So my son is the only one in my family who was never tested for celiac. We were given some pretty bad advice when Celiac kid was first diagnosed and told that it was highly unlikely to have a second child with Celiac. This is obviously not true. If Celiac is in the family there is a 20% chance (or more) of first degree relatives also having it.

Hubby tested positive, I tested negative but had already been gluten free for some time (and I have pretty obvious reactions to gluten should I try to eat some now), so of course my son needs to be tested! Only, in order to do the test you need to be eating a normal gluten containing diet. By the time we realised son should be tested our house was already totally gluten free. Eating gluten at a friends house once a week is not enough for the test results to be accurate.

We tried a few times to do the gluten challenge, but it just didn’t work and we gave up on the second or third day every time. Now here in Poland he has been eating school lunches provided at school instead of a packed lunch. Its probably not been as high in gluten as he needs but he’s been going for over 2 months (a gluten challenge / gluten force is usually recommended to be 6-8 weeks).

So today is the day, after school off we go for that needle prick! Son himself is convinced he has “it”. I don’t think he does, but I have noticed he has been more restless and very forgetful (more then usual) during his challenge. Says a lot about the gluten / brain connection. Perhaps brain fog is not just something that affects celiacs? I sure as hell cant wait to get him back on my food, and neither can he!

I know many kids with autism, ADD or ADHD do tons better without gluten in their diet. Maybe we would all be better off without gluten? I sure think so.

If it turns out son has celiac then I guess in his case its pretty silent, so wont really make much difference to his life as it is now. I obviously hope he doesn’t have it, but either way it doesn’t really matter. Then its only my genetic test to go! 3 years now Ive had the sample pot and not done it. Im too chicken! Although my Dr is convinced I am a closet celiac and Im pretty sure I have the gene, its almost to final to actually get it on black and white! Some celiac campaigner I am huh? 😛

Son first then me. Nag me, ok?

Linda

Christmas is approaching, FUDGE TIME!

7 of December, and I was done with ALL my gifts over a week ago. First time ever! Usually Im running around like a headless chicken until hours before getting myself together. But no. This year, I am calm, organised and dare I say a perfect little wife. Tree is up, decorations are up, kids are watching the Elf movie and here we go. Bliss. Or…. boredom…?

I decided today is the day I will make christmas sweets. last time I made Christmas sweets I was probably 16. It was the one thing I always did at Christmas as a kid. Time to revive this tradition. Only obviously now, gluten free. Or maybe they always were? I remember things dipped in chocolate and fudge and ginger biscuits.

I am going easy on myself, starting with fudge 🙂

You will need;

  • 3 dl sugar
  • 2dl heavy (whipping) cream
  • 1/2 dl coco powder (make sure its gluten free as many are not!)
  • 50g butter
  • vanilla sugar or essence, or if you dont have, scrap it!
  • chopped nuts or seeds. (OPTIONAL)

Im going bare, no vanilla essence or nuts in my fudge. I like it plain.

In a pan with a thick bottom, add your sugar and cream and stir. Bring to a boil and lower the heat. You want it to continue to bubble, but not rapidly. The temperature needs to get to 122 degrees apparently, but a meat thermometer will NOT work. I do it the Swedish way and do “kulprovet”. This means you drop a small amount of liquid in a glass of cold water, when the liquid balls together to a lump and you can easily mould it with your fingers, its ready. This took around 15 minutes. Add your coco powder and stir until there are no lumps. Turn your heat off and stir in the butter (this is where you add your vanilla and nuts if using). DO NOT TASTE THE MIXTURE. Its hotter then hot and your tongue will be on fire for the rest of the day. Trust me.

Pour the mix in to your pan of choice that you prepared earlier. I lined mine with parchment paper, but you can use butter or oil if you like. The bigger your dish/pan, the thinner your fudge.

Leave it to cool. You can leave it out or pop in the fridge, up to you. Once its cool, take it out and cut in to squares on a chopping board.

Eat!

Store in fridge and eat within 2 weeks.

Linda

There are many versions of fudge. Some like it grainier, some like it chewier. Cook longer for less chew and more grain. Mess about with it, try adding the chocolate at the start, try it without butter 🙂 Anything goes in chocolatey gooey fudge world 🙂

Check out my pinterest Christmas board for more gf goodies!

 

Catching cold in Poland (totally = death)

96-flower_slippersYes, its true. Ask any Babcia! If you forget to wear slippers in winter or socks in summer on the floors, then you will surely catch pneumonia pretty much instantly. If your child does not wear his or her jumper you are a very very bad parent. Its true. Really.

It doesn’t matter how many times you tell a babcia (a grandma / older lady) that pneumonia or a sniffle is caused by viruses or bacteria, they know better you see, and the answer to all evils is to wear slippers at all times.

I think these babcias would have a heart attack and die on the spot if they knew that we in Sweden allow babies to sleep outdoors all year round. We also sleep with windows open and often leave windows open in such a way as to create a draft. Yup, even in winter. Air you see is good for you. In Sweden at least. In Poland a draft can result in imminent death almost as fast as not wearing slippers. (Read about the killer draft here on my friends blog)

Its not only babcias, also well meaning aunties, random strangers, and believe it or not, doctors! One would think that slippers is the answer to the entire worlds problems. Perhaps if we all wore slippers we could close down 50% of hospitals…. at least!

I have had well meaning stranger babcias stop me in the street to tell me to put more clothes on my kids. NO JOKE. The more polite ones just tut and shake their heads while giving me one of those babcia looks.

Now, lets not even start on the cold milk in the cereal in the morning…… (instant killer)

Linda

Dzien Dobry! Saying hello in Poland, and you MUST! 

say-clipart-11971028791107470649FunDraw_dot_com_Cartoon_Kid.svg.hiIn Poland you say hello. To everyone! I mean really, you do! I used to think my husband was super embarrassing when he walked in to shops in Dubai and said a bright and chirpy ‘Hello’ to the sales assistant or any worker who happened to be nearby. Now, after a little over a year in Poland I get it, and I also do the same!

Everywhere you go, bank, post office, small shop, you walk in, you say Dzien dobry. When you have paid, you say Do Widzenia. Yes, even in the bank!

The post office one is crazy, you actually walk in and say hello to the other people in the queue, not to the person working there. If you are not the talkative type you may get away with a nod. Its weird how courteous people in poland are, yet if you smile at someone they will think you are totally bonkers.

Im a smiley kinda girl, I guess its what I do, I smile at everyone (ok, maybe not everyone, but lots of people), and this seems to almost frighten polish people. I guess its a bit like the ‘no eye contact rule’ in London on the tube! But say hello you must!

So here I am, like a total lunatic. I happily say hello to the other customers when I walk in to the post office or a bank, I say hello to the security guard at the door of any building, and bye when I leave. I say hello to the joggers outside of school every morning, and the old lady who walks her dog. I say hello to the ladies at the till and the other patients in a doctors waiting room. I say hello to pretty much everyone. Not in Tesco though, its to big, to many people to say hello too! Only the security guard and the till person gets a hello in there. I also say hello to anyone before addressing them. So if I need help in a shop I would say, ‘Dzien Dobry, do you speak english’, rather then ‘Excuse me, do you speak english’? Unless its someone very young, then chances are they know english well and wont be offended at the lack of a hello!

And with that I bid you Do Widzenia! Im off to IKEA where I will say hello and goodbye to a ton of strangers 🙂

-Linda

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