Hello Girls! Thank you for sharing your photos. I love seeing all of the kids. They are all so adorable and of course, we know how strong and special they...
Hi to all the Mothers here on the Uks Mothers day. I know its not Mothers day in the usa, not sure about Austrailia? I got some lovely pressies, candles and an...
Hi Denise and other mum's, Happy mothers day! It is so annoying about the feeds isn't it. I do know exactly what you are going through and in the end it is...
Happy Mother's Day to all the wonderful moms in the Uk. God bless all you moms as you work 24/7 to provide for your little ones and be the best you can be. My...
Hi everyone, I'm writing this from the hospital in Windsor, Ontario. Just a quick note to let you know that Rylie has pneumonia and was admitted yesterday....
Hey there everyone! Happy mothers day! My brother in law has submitted our story to Oprah 6 times!!! No answer yet... he says he will keep trying! Denise- I...
Hi Laura, Im so sorry to hear that Rylie is ill, i know its awful watching them struggling to breathe. Harry unfortunatley gets pneumonia about 6 times a year...
Hi Laura, Sending strong positive thoughts to Rylie, you, Don, Karys and the family. I know you have talked about your fear of pneumonia. My heart is with...
Hi Laura, Steve & I also send all our love, thoughts, hugs & kisses to you all. Rylie is a strong girl & this will just make you all stronger. keep us...
Hi everyone, Just wanted to let you know I have recently been contacted by another parent who has a 5.5mth old child with MPEI. This little girl actually...
Hello, We were up in Ann Arbor seeing our Neuro yesturday for the last time. It was strange. We also went up to visit our nurses on the 6th floor of Mott...
Hi, Just to let you know that we are thinking about you both at this difficult time. I am glad steve was there to hold her hand and that she is now at peace. ...
Hi everyone, I just want to write a quick note to thank you all for your words of encouragement and prayers. Rylie is doing better, though she started having...
Hi Laura, sorry to hear Rylie came down with pneumonia, I'm glad she is starting to get better. Nikkie, sorry to hear about Steve's mom's passing, I don't know...
Hi to everyone, It has been a busy week and wanted to check in and say hi to all. Nikkie, I am very sorry about Steve's mom. Please know I am thinking about...
Hi All, Firstly thank you for all your kind words re: my last post about Niamh, it means a lot to me knowing that you all think of her despite your lives being...
Hi Alison, Thats good news for Niamh. We think it was the keto diet that caused Harrys tummy problems. Alder hey uses the MCT version of the diet which is...
Hi, Just read my last message back and realised it sounds really negative. I worded it wrong, i wanted to say that Oskar, Molly and Harry all had the MCT...
Oh Denise, don't be sorry at all. I didn't read it that way, I actually read it as if you were saying that it was a good thing she is off it and that wouldn't...
Hi Everyone, Well, we are no longer in Windsor. We came to London via ambulance Friday night (and of course, we had a horrible winter storm that night)as...
Hi Laura, Im so sorry to hear that Rylie is having such a bad time of it. The prednislerone does cause seizures in harry but it usually means he is getting a...
Hi Everyone, Harrys not too good today. His breathing is terrible and we have struggle to get his sats above 85 unless we use a mask and 5 litres of oxygen....
Hi Laura, So shocked and saddened to hear Rylie has taken a turn for the worse. Will be thinking of her lots and hope that the EEG today gave better news? Let...
Denise, Allison, Laura Just wanted to let you all know Alexander and I are praying for you all. Hope all tests and treatments bring positive results, in the ...
Vanessa, I am interested in doing a poll if you can figure it out. I am still not sure what all Micah has seeing as more things come up as the docs seem to...
Hi Everyone, I have just read a wonderful book called Hannahs gift. For those in the uk it is in asda for £2.00. It is about a little girl called Hannah who...
Hi, I dont know if anyone is interested but i have found a website that make silver jewlery with your childs finger prints on. They send you a kit to cast the...
Hi everyone, Just wanted to relay some very sad news. We are now back in Windsor where Rylie is being made comfortable and we await her passing. She would...
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