And so the tests continue. Despite the amount of food LBM can put away, he is just not growing. So where does it go? Ok, he poos more than me and the dog collectively but why is he just not growing? At first it didn't bother me, as both birth parents are fairly short. But now at nearly 4 years old, he is noticeably still in 12 month clothing. He is falling behind in swimming and sports, as he simply just cannot run or kick as fast as the other kids with longer legs. Something is just not quite right and we feel we need to succumb to more tests, as there is no chance they make school uniforms for 1 year olds.
All symptoms point to Prader Willi Syndrome. Hey, who doesn't want a Prada Willy (!) but actually it's a genetic condition of children with short stature who never feel full and are constantly hungry. Something which has been on my mind right from the start but was perhaps just too fearful to explore. And so yet another set of tests are scheduled.
The doctors and nurses are amazing and he is a little champion throughout the blood tests and examinations. He is prodded and poked and poked and prodded and we wait weeks for the results. The PW tests come back negative. I have mixed feelings about this. In some respects, I am thrilled and relieved. But on the other hand, I worry what it really could be. There is talk of further tests and the introduction of growth hormones which frightens me. I suppose it's the unknown. I don't want my little boy injected with stuff. In addition, they have found a significant heart murmur and so there more tests are on the horizon. I need time. Time to
Dear mummyinthebaking,
ReplyDeletelet me start by saying how much I love your blog, it is written in such a wonderful, heartwarming manner and I was actually a bit sad when I realised I had read your last post! Your love for LBM shines from each page and as the (much) older sister of an adopted wee boy with developmental delays myself your words truly resonated with me. I am actually in the process of writing my dissertation on adoption and with your consent I would love to include your blog in my research. My focus is on how parents can help their kids adapt to their new environment, something I'm sure you have strong views about. Naturally I would use pseudonyms for names and the title of your blog as well, making sure I don't include any details that might identify you. I really hope to hear back from you...
Best wishes (and lots of love to LBM and LRUN),
VAT
Hi Viktoria, thanks for your lovely feedback. Good timing as more posts are coming. I would be delighted to feature in your dissertation. With love MITB
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