Riding bikes- done! Lung – done!

So we are back, a week ago actually. And guess what? Hubby did ALL the laundry while we were away so now I can do none and get away with it for probably another 2 weeks! Woohoo!

Both kids learned to ride a bike. First big brother (9), who said “its time, take my support wheels off” and later the same day went on a 3km bike ride, then the day after, zebra kid who simply couldnt stand that her big brother knew how and demanded her support wheels came off too and later that evening did it, all on her own!

This obviously is very late for a 7 and 9 year old, but for kids who were in Dubai until very recently its pretty darned good. We never rode bikes around our sandy roads in Al Waarqa….. We did however let the kids ride bikes in the majlis (formal living room), haha.

Then lungs, the stay was shorter then I expected, but they want us back in 2 months. Her eosinophil count was higher then they expected and the new meds had to be started at a higher dose then previously planned, so we have two months for the meds to do their thing, then back again for a bronchoscopy (her third). The steroid dosage she is on now will unfortunately affect her bones, so we just have to hope her bone pain doesn’t get worse again. Bone pain wise she’s been great for about 4 weeks now with hardly any complaints. I will start the daily bone broth again and continue with the vitamin D and Magnesium oil too. Fingers crossed.

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Bolesławiec

I have to tell you all about our little trip to Bolesławiec! Although dont ask me to spell that again, or say it, its really hard to say it.

Basically, every Polish person knows this town, and so do most tourists. Its where the famous polish pottery is made and sold.

Now, Im a white and pastels kind of girl, not really in to these patterns and stuff, so when hubby asked if I will be buying anything I said “no, probably not, but its the kind of place you have to have been to”. (Im laughing now as I write this- just wait)

So, off we went in the car, we were in a group so drove there together, the drive was around 1 hour and 15 minutes from Wroclaw, and that was not the kind off full blast driving I may have done if I was alone.

Im not going to bore you all with every minor detail, lets just say we went to A LOT of pottery shops. In the first one I bought a couple of things, in the second some more, and so on….. Yes. I bought something in every shop. And let me tell you, pastels and white NO MORE. Polish pottery all the way! We had Chris with us, my friend from the blog Kielbasa stories, we met online via another blogger almost 3 years ago, now we are like bff’s that never see each other, we talk (online) almost daily. She is a bit off a polish pottery addict and I never really got it. Now, Im totally there, she just laughed and said “I knew it!” Basically, its all her fault. She was an awesome guide though, took us to all the right places. Lets get to the pictures, because this is totally a picture post!

Obviously (I mean, obviously) I came home and realised I pretty much have to go straight back because I need more! Heres the stuff I didn’t buy and absolutely need (need. As in, I MUST HAVE IT – you will all help me explain to my husband right?) I mean the sink, I need that sink in my life!

I was sending images to relatives throughout the day, and this pottery may very well be the reason some finally come to visit, LOL!

My haul below, not bad eh? (why didn’t I buy more!!??)

I used half of it already, and Im happy to report it somehow matches my white and pastels!

After we had shopped and browsed some second hand stores we went for lunch. A place called the Blue Beetroot owned by a british-polish couple, real fish and chips, steak pie and other goodies, never mind that stuff though, they managed to feed us gluten free people pretty well, and nobody got sick. They have menus in English and all the staff spoke excellent english as well.

Great day, highly recommend it if you ever go to this area. I cant wait to go again. Thanks Chris! (<- In a good way and a bad way I think….)

 

Tesco Poland – Thank you!

Remember some time back when I wrote about Tesco Poland and how absolutely awful it was in terms of free from? I sent that blog post to every Tesco head office address I could find, tweeted it repeatedly and emailed SO many people. Then… a few months back things started happening in Tesco. A free from shelf appeared, then two shelves, then three…. the bio section grew as well. I kept saying to hubby, I HOPE they bring their free from range over, its SUPERB… then I started seeing the Free From lactose free stuff (this from a shop that didn’t even have basic lactose free milk before). The Free from cottage cheese arrived a few weeks later, and I was like “YES!!! They are SERIOUS”. We now have a gluten free section that would put most other shops to shame, bigger then Auchan and carrefour for sure… and today…. oh wow… today, there was a free from sign on the freezer, and there was ICE CREAM! And there was jumping up and down a little and squeals of happiness and YESSS!!!!!!

Now all we need is the pies, the ready meals, the lasagnes, the cottage pies the everything!

And one of the leading sandwich meat factories went gluten free a couple of months back, and another looks like its following suit! POLAND, you are shaping up nicely for people like us! Im so happy. Really. Its only food… and yet its the normality of walking in to a shop and being able to buy something that others take for granted.

Tesco Polska, dziekuje bardzo!

Inne wiadomości na temat życie bez glutenu w Polsce, nie zapomnij śledzić nas na Facebooku.

Phone calls to everywhere

Let me tell you guys something about living in Poland. It is HARD. Most of the time its not so hard, and then sometimes, its UBER hard. Like when your kid has been diagnosed with a rare disease that affects 1 in 20000 and your dr’s have no idea where to send you, like when you have to randomly google and try to find where to go and call and be hung up on by people who are scared to say they don’t speak english (Im sure they don’t mean to be rude), like when your husband is in Dubai and cant help because all the calls are long distance and many places don’t answer when they see a foreign number calling.

Like when you are texting instructions to your Polish friend and she spends literally days on the phone making phonecalls for you. DAYS. So far 4 physios do not want to see us. They are scared they will hurt her and they have never dealt with EDS. The dr we already saw is researching other more suitable drs, but his receptionist hangs up on you because I can only say hello and his name in Polish… the rest is english!

I have been looking (not so actively admittedly) for a genetic specialist since October, and the private one says the testing is not available at all in Poland, the private lab says they can do the genetic testing but its 6500zl. We have a referral to do it in public health which would be cheaper, but seems there are no genetic specialists? Or there are and they are hiding. Our dr. said forget it, you will wait years, go private. So do I go directly to the lab and get results that I wont understand? Go to the private dr that wont do the test? Or take my now probably expired skierowanie to all the NFZ places and hope they will help? There is an EDS specialist in Warsaw, one of our dr’s (dr S, THANK YOU for your absolutely amazing dedication to us) has been emailing him, but he is not replying.

Thank God for Daria. She called the NFZ Head office and got two numbers from them to call, tomorrow we will try again. I say we, because while she makes the calls I sit and fret and drink to much coffee (again) and try to keep more hairs from going grey (unsuccessfully I may add).

As a backup I also posted in the expat group and got a link from there for a genetics place, it says they mainly look for other things but surely they can do EDS too? Lets see. Fingers crossed InshAllah!

Must go drink more coffee. Number 7 I think? Its only 4pm 😀

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A big thank you to my school – a step in the right direction!

A big step for mankind…. well, thats how it feels. So far in Poland I haven’t come across a school with a food policy (the number one question one of those parents ask when looking at schools). Last year I nagged, other parents nagged, many others also nagged, against. As they do you know.

But this September big things happened. There is a food policy. A food policy, an allergy action plan, staff that have all been trained in first aid and trained on allergies and contamination. Eating in class rooms will stop over time, and the school will be nut free. No more birthday cakes at school (YES!!!!!!) There are now standard procedures for kids with “issues” and I no longer have to make my own information leaflets or train staff.

This, this is good for schools. Its amazing. It can only help to make the school better. I am a firm believer in food policies. I am a gigantic supporter of food policies. I was, even before celiac kid was diagnosed. Why? Because I am a human, because I know that even if my kid doesn’t have a food issue, someone else’s kid might. An anaphylactic shock is not something I want any child to experience, or watch.

As one of those mums I might get some dirty looks over the food policy, but I will hold my head up high, and take some credit, not blame. Because a food policy is the right way to go. It teaches our kids about others who may be different, it makes them aware, a world that is aware and considerate. That is a world I want to live in.

Thank you school!

Back-to-School-Lunch

Gluten Free in Poland

Im on so many gluten free forums and Im constantly replying to the same questions about gluten free in Poland, so time to make a post me thinks!

Being gluten free in Poland is getting easier and easier. While some smaller towns mainly sell gluten free in specialist “health food” stores, larger chains usually have some items available. Some shops will have just a few items, scattered around the shop, others will have huge sections or even entire aisles dedicated to gluten free.

The main Polish brands are all clearly labelled with images for egg free, gluten free, wheat free, lactose free and so on. Its really very easy, even if you don’t speak Polish to find what you need.

The main chains that stock gluten free are:

  • Auchan, most stores have a large gluten free section.
  • REAL
  • Carefour, some of the larger stores have an entire aisle dedicated to gluten free.
  • Piotr i Pawel
  • Alma
  • Intermarché
  • I will mention Tesco here, because they recently introduced gf bread to their stores, this is all they will have though, so if you want other things and have other supermarkets available, give it a miss. Edit April 2016. Tesco has recently done a magic turnaround and is now one of the best for GF near me. Go Tesco!

For eating out, the words bezgluten and bezglutenowy will be your best friend. Both mean glutenfree. Pronounced how they are read. A visit to celiakia.pl (Polands celiac society) is well worth your while. The english section is tiny, but if you stay on the Polish section you will find lists of restaurants checked and approved by the celiac society. Menubezglutenu is another site which lists places with a glutenfre menu, you can search using a map, in polish and english.  Many upmarket restaurants have their own gluten free menus. Steer clear of basic road side establishments, as they mainly serve gluten loaded traditional Polish cuisine and will probably not even know what gluten is.

Poland also has some 100% gluten free establishments.

  • Dom Pod Ptasznica – a gluten free guest house in the mountains. The owners are both celiac and all the food they make is gluten free and wheat free.
  • Friendly Food Poznan – A totally glutenfree cafe / restaurant with amazing food. Review here.

Some of the common (gluten free) Polish brands are:

  • Balviten
  • Natura (meats)
  • Bezgluten

Some other things to look out for:

  • Grycan ice cream, all but 2-3 flavours are gluten free and labelled accordingly
  • Goplana chocolate, Poland’s oldest chocolate brand, all labelled bezglutenowy on the back and super yummy (I have yet to find a flavour with gluten)
  • Costa coffee (also sometimes called coffee heaven) have individually packed cakes that are gluten free
  • Trendy Vegan / vegetarian cafes seem to be all over Poland, they will usually also have a ton of gluten free stuff on their menu. Check them out!
  • Rossman – while a sort of chemist, often stock gluten free items.

If you are an expat, several pre schools now offer bezgluten food and have been trained and approved by the celiac association. YAY! 🙂

Be careful with:

  • Polish hams, sausages and bacon – almost all contain gluten
  • The famous polish kielbasa! ONLY buy the ones labelled gluten free.
  • Cross contamination, while many places may be able to give you something gluten free, the knowledge regarding cross contamination can be a bit hit and miss
  • Bakeries offering gluten free, these items may very well be baked on site which would make them low gluten, not gluten free, always ask and dont buy anything that isn’t individually wrapped if you are shopping in a bakery that also handles gluten items.
  • Airports! If you are going to be stuck in one for a while, bring food. Not even Warsaw airport has anything on offer.
  • Hospitals. No, really. Polish hospitals are terrible at feeding celiacs. If you end up in one (God forbid) you need to bring your own food. There are some exceptions to this, the lung clinics in the mountains see CF patients from all over the world and they are usually ok to feed those with allergies and celiac also.

Enjoy Poland and have fun 🙂

For more tips on Poland and gluten free life in general, join me on facebook! 

Wiosna visit.

My last visit to Wiosna they had 53 children.

53.

And thats one orphanage in this area, there are many more. 21 babies, 7 below 4 months old. Now, those of you who have kids know that buying nappies (diapers for the American readers) is expensive, and no matter how much you stock up, they run out super fast. Imagine then buying nappies for 21 babies. I mean, you could fill 2 cars and it will still run out in a heartbeat!

Then the formula. The amount needed is unimaginable to me. While my school is collecting monthly now for them, it is just not enough. I have gotten another school involved also, and they do bi monthly collections, and there is a Polish lady collecting in her daughters class in yet another school. But what we bring them, its still not enough. Its like feeding a hungry dragon, now matter how much you give, the dragon is still hungry. Or like Elsbieta (who works there) says, its like a big black hole you can never fill. But try we must.

I wanted to set up crowd funding for them, but I was hoping to raise large amounts and didn’t want to do it in my name, I wanted the funds to go directly to them, but sites such as Just Giving do not let you sign up as a charity from Poland. Elsbieta is looking in to alternatives, but at the moment, it seems more or less impossible. Every site I checked so far does not let Polish charities register. So I decided to go for something smaller, just while we wait, to fill that big black hole a bit, but sites such as ‘go fund me’ are also not an option, as again, I can not raise money from Poland, only give! I am left with 3 other sites that I am looking in to at the moment. I desperately want to give my friends the option to help, even if its just a little.

I will update you all on this later on, now I will just leave you with some photos. And yes, I have removed the children’s faces. While they are all absolutely gorgeous, it is not right to reveal their identities. (But don’t I look good with a baby!!?? I might need to adopt a few!) -Linda

http://dzieci-wiosna.pl/index2.php

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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Orphanages in Poland

wiosna

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

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