Luckily since then we’ve had all the micro erray tests come back and there are no deletions or abnormalities that they can see. At my 12 weeks scan my baby was diagnosed with Micronesia, and since then I’ve been seeing all sorts of professionals and the only outcome we have had is “we won’t really know till she’s been born” as you know this has been terrifying for me. Im a 20 year old mum with a little 22 week girl inside my tummy. Reading your beautiful little girls story really has been my saving grace. Keep up the lovely work you’re doing with this blog! □ If this is something you would be at all interested in helping us out with, that would be amazing. This brochure will be used to recruit parents for participation in the initial creation phase of the PRS QoL, and in Social Media when we open the questionnaire up to the larger public for the validation phase. I know this is perhaps a long ask, but I was wondering if you would be willing to let us use some of Brynlee’s pictures in our brochure. The way you’ve captured Brynlee’s story is so beautifully done. We’re hoping that the creation of this questionnaire can help bridge the gap between the care and direction providers offer and the struggles and issues parents face after they’ve left the hospital and have returned home. We are working with multiple universities across the western US to develop the PRS QoL, but are the initiators of the PRS QoL. I am a research coordinator currently working on the creation of a PRS quality of Life questionnaire at the University of Utah.
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