Celebration and Awareness

I hate celebrating in writing because every time I do, I feel like I jinx myself. But here I go again...

Laynie has been without oxygen for 5 days!!!! She still needs it while she sleeps and first thing in the mornings while she has a lot of secretions in her trach still. She has done this before and then tricked us, so we aren't getting too excited. But it is really hard not to be too excited, because I AM JUST SO EXCITED!!!! She has kept her o2 stats above 90 every time I have checked her:) She is also wearing a new Speaking Valve/ Passy-Muir Valve. It is the purple thing or the clear thing. The big blue thing is a humidifier which she also wears all day. We had to drill a hole in the side of the valve because she would suffocate without it. The valve allows her to breathe in from it but no air will come out of it and she needs to exhale through her mouth. She is unable to do this for some reason so we drilled a tiny hole and it works perfect now!!! It is soooooooooooo nice to not have to put back on her oxygen 1,234,943,934,787,199,000 times a day- seriously!!!! And sooooooooooo nice to be able to just go outside or somewhere without getting the portable o2 tank and carrying with us. It is something so little, but it really is such a big deal. It also means that her lungs are getting stronger-yahoo!!! She will probably still need it while she sleeps and while she is sick, but we can deal with that! I am hoping and praying that this continues and she isn't tricking us again!!!!

It is feeding tube awareness week. Laynie is still 100% tube fed and we feed her a blenderized diet (which for her is, part formula and part real food blended together, But some blenderized diets are all real foods and no formula blended together). She eats 5 times a day and throughout the entire night. We work with her occupational therapist and speech therapist every week on oral eating, but it is something she is very adverse to. Someday you will get there baby girl!!! There is a positive side to having a tube-fed child.... she eats no junk food at all, I can keep her hydrated when she is sick, and it is really easy to give medicine to her:)










 





 

This is her little button on her belly.