Physio take 2

Went to our new physio today and it was a success I guess as he agreed to work with us!

She sad it didn’t hurt, which is fab, but the physio said her joints are very loose, which Im sure is not good? He did a lot of gentle massaging and bending and checking, more next time he says. We ran out of time.

He made me prepare videos of things to do at home, 3 times a day. Every day. Not at all overwhelming. (Note the HINT of sarcasm there…)

This afternoon has been a real struggle, she seems absolutely beat. Exhausted, but as opposed to her usually pale exhausted she is a nice rosy pink exhausted, so at least we know he got her blood circulation going! More physio on Saturday then Tuesday and again Thursday. Privately at the moment unfortunately as the NFZ wait list is like 2-3 months, lucky us we get to pay 3 times per week.

So grateful to have a friend who does school runs with oldest 2 mornings a week so we can rest tomorrow morning.  Who said being a housewife was boring? I hardly have time for housewifery between appointments, playing iPad games (my wine you see), and school stuff. It takes all my energy some days just to stay sane. I often wake up at 5 am and google crap, lately I google in Polish too, just to have my bases covered. My polish sucks, but apparently good enough for googling.

Then next week, I will, finally after needing to go for a long time, go to the dr for me. Im gaining so much weight and although I had it all put down to stress and eating chocolate on tough days (which is most days) its getting a bit silly now. Need to check on the thyroid and all the other usual suspects. Cant have the mum falling apart!

Oh, and then, just because I have to say it to people, to you guys…  a lady in the EDS forum Im in posts saying her kid may have CF and shes super scared, another woman goes, “oh CF, yeah, my friends kid died from that”. Really? People….. sometimes, its important to use our brains. Poor lady. The last thing she needed to hear in the middle of a possible diagnosis. As much as we, the mums of all these kids, want and need truths, we go to these “support” forums for support, not to get to feel like someone just shot us through the heart with a poison arrow. Ive been on the CF rollercoaster, and its not an easy ride….

Anyway, time for baths and stories and snacks and meds.

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You win some you loose some….. (allergies!)

So we are back from the hospital in the mountains. It was amazing, gorgeous, and calm and everything you could possibly ever ask for in a hospital, the scenery in Karpacz is amazing. Oh, and they could FEED her! First hospital stay where she ate the food!!

Results? Well, not all test results are in yet, but it looks like CF is more or less ruled out. Celiac kiddos lungs are healthy with no damage! If anything she has strong lungs that have been able to cope with so many pneumonias. The doctor almost got himself a big slobbery kiss when he told me this. Then I remembered Im married (although the news was so amazing Im sure hubby would have forgiven me, heck, even done the kissing himself!).

We left with a couple of handfuls of more allergies diagnosed, but egg was not giving a reaction this time!! We had an egg challenge which went well so we are now able to introduce limited egg to the diet!

So what remains now? The liver, kidneys, lungs, heart, spleen etc have all been looked at! So, now the immune system. Her blood is fine, but part of the immune system has something to do with the cells, so thats next on the list. We are also being reffered to the paediatric gastros here in Wroclaw to speak about her growth (which is not really happening) and follow up in regards to her Celiac.

Now fingers crossed the genetic test and last sweat test comes back clear, but the doctor wouldn’t even consider that it may not as her lungs are GOOD! Woop woop!

I leave you with some images from Karpacz, all iPhone pictures, so just imagine if I’d had my proper camera!

-Linda