Eggs and dogs and underwear.

Its been a while. Ive been feeling very uninspired and lazy. Frankly, its been to hot to THINK. We have had days with 33 degrees, which is not so bad actually compared to Dubai, but in Dubai there is AC everywhere! Here, the closest I get to AC is standing in front of the open fridge looking for snacks. Me and the kids have all taken to wearing just underwear in the house.

(Funny that, apparently Polish people do a fair bit of walking around in just their underwear, lol,  Polish Housewifes facebook post , my friend Brooke has a whole blog post coming on the subject )

We had a ton of new medications given to us for Celiac kid, we are getting closer to answers. Seems her lungs, the bronchii (bhroncolii?) bits, are constantly inflamed, when it flares up and gets even a tiny bit worse, pneumonia or upper respiratory infection follows. We also now know that her bone pain is highly likely to be linked to her over use of steroids. Dr has her on a new medication and we are hoping to slowly faze out her other two steroids.

Her allergy test results are also back, and they say dogs and eggs. Both a total shock. Dogs, because although we have dogs, our dogs dont have the dander normal dogs have, they are a non shedding breed and most people with pet allergies tolerate them very well. Doctor also seems to think its wrong as nothing showed on dust, yet she reacts strongly to any amount of dust. More testing needed in that department. But EGG! It all makes sense once I start reading…. egg allergy can cause wheezing, respiratory issues etc etc etc. So on the one hand Im numb and a tad devastated that she can no longer eat eggs, but on the other hand, I feel a little like we just won the lottery, because maybe, just maybe this is the answer we needed, and maybe, just maybe, her lungs will finally be able to improve!

We have also consulted a naturopath, who also happens to be one of the ladies I met with just when I started GlutenFree UAE, her daughter is gluten intolerant. She gave us some great advice and I hope to share all this with Celiac kids Dr – who seems very open minded – and hopefully we can all work together to help make this awesome shining star of a girl feel a bit better.

Celiac Kid’s comment when we told her about the eggs was ‘but mum, thats so lucky, I don’t even like eggs!’ , its true, if she knows something has egg in it she wont eat it, the only hard blow here is ice cream and pancakes. Awesome kid that she is she is already getting stuff out of the drawer asking me if she can still eat them, ‘has it got egg inside mumma?’.

We still haven’t been on our holiday, but should be off soon, then school starts with all the work that comes along for us gluten free mums, new classroom, teacher etc. I never shared my school letter last year, I will be sure to do so this year. I edit it yearly to suit our needs so have a ton of versions already 🙂

Off to make glutenfree – eggfree cheese rolls now 🙂

Have a fab day!

Linda

sad-egg

Please note, its the egg thats sad, not us! 😉

Celiac, Dubai, School and another Pneumonia!

Image Boy do I owe you all an update, its been a month! Admit it, you couldn’t sleep at night for missing me? 😉 Right, so we went to Dubai, had an awesome awesome holiday. Got a sunburn, went to Wild Wadi, splashed around on the beach. Celiac kid had a wheeze by day 3, so once again it just reconfirms how right our decision was! Being in Dubai was so ‘normal’, felt like we never left, so comfortable being around those people we have known for so many years. I miss having friends like that here. It will come, Im sure. Anyway, back to Wroclaw, picked up our puppy and then Big kid started school. 1 week in he says he loves it JUST AS MUCH AS HIS SCHOOL IN DUBAI!!! Woop Woop! RESULT! After the horrid experience in the last school he deserves the best school we can possibly give him. I need to know that my kids are happy and loved whilst in school. Fingers crossed and touch wood this school keeps on delivering 🙂 Celiac kid had her birthday! She’s 5, FIVE! How the hell did this happen? My baby is a big girl? Then yeah… the crappy news. Celiac kid coughed a few days ago, just one cough, but I looked at her and I just knew what was around the corner…. the day after I ended up taking her to our landlord’s clinic (our landlord is a gastro and knows Celiac well, what luck!?), he helped me find a good Dr who speaks English and works with kids. I must say, so far the Dr is wonderful. The same afternoon we saw her, and although Celiac kid just had a slight cough and no fever (yet) the Dr listened to me and believed me. Examination confirmed a bad right lung, and by evening her fever was reaching close to 40. Thank God we acted so fast. Saw the Dr again yesterday and the entire right lung is very bad, but luckily her left lung is clear and because of this her oxygen levels have managed to stay high enough for her not to be admitted. Obviously any other kid would be admitted, but again, the Dr has listened to me and agrees Celiac Kid is better of at home. We have remained in phone contact by texting every few hours. Best part though, this Dr is already sitting at home doing Celiac research and learning more then she knows now, and is finding us a string of expert so we can investigate every avenue there is and make some kind of plan. Its not fair to keep having these pneumonias. I am no longer able to tell you how many she had…. awful. Anyway, once she is better there will be testing for other allergies, lung scans etc, Im actually at this point thinking finding something may not be so bad, because at least then you can try to treat it! Im glad I decided to not let her start school til September, this time was meant to be spent growing and getting stronger, not having pneumonia number 6 or 7, but hey ho. Im feeling positive despite all. How can I not? A great landlord, a great house, a great and understanding Dr, ok oxygen levels, a puppy!  We choose our reactions to some extent, and I am truly grateful for what we have and that I haven’t lost the plot. Every time the sh**t hits the fan and Im able to stay with my feet firmly on the ground is a victory in it self. I have blog posts waiting to be written, Celiac Awareness one with some great links from lovely blogging friends, and also an Airplane food one. Soon, One day InshAllah! -Linda

Night time ramblings

Im sitting here, its late, and Im feeling happy and emotional at the same time.

Today was a really perfect day, I played frisbee with the kids in the garden, I did laundry while the kids played, we went to the pet shop for dog food, came back and took the dogs for a long walk. Celiac kid and big brother were running. It was nice. We came back, had dinner.

Normal day, nothing special right..? Only for me, the fact that we get to have these normal days is so very special. I think, for the first time in a very very long time I am more relaxed. I am trusting those lungs of hers to do ok, and I am breathing easier knowing that she is.

So my normal day… I am so grateful, so grateful for every single day like that we have.

There is a light , I can see the light, and maybe, just maybe, this crazy move we made will pay off, maybe we found our answer, please let it be so.

Its weird how the minute you decide to do something unconventional, like living apart from your husband, every Tom, Dick and Harry comes out of the woodwork and starts talking about how marriages will fail if you live apart, cheating spouses and failures, people who never once had an opinion about your marriage previously are all announcing pending doom. Whatever I say. Whatever. Really. None of them have a clue.

Living here, living apart is actually saving us, saving us all, because finally, we get to have these normal days. I get to play frisbee with my kids, and hang laundry and cook while they play and not worry that maybe now the wheezing has started and maybe now the cough will come and the issues that follow.

This is where we are not your average celiac family, because most do not have these issues that we have, if you are newly diagnosed I need you to know that if you read this, this is not the ‘norm’.

All we can hope now is that good gets better and better gets strong, and maybe celiac kiddo can outgrow some of these lung issues. Its really not fair that such a small little thing has to battle so many pneumonias. But if it happens, its ok, we live now, we take each day as it comes, try to stay relaxed, don’t make to many plans because cancelled plans are awful.

Today was a day that most people take for granted, and yet for us, it was one of the first completely normal awesome Sundays.

My son, my awesome trooper, my diamond, gave me a hug this afternoon and said ‘ thank you mummy for the bestest day’.

-Linda

Another one of those trips….

Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda