Allison, Thank you for taking the time to work on this and think of us all in your own pain and loss. I would really like to participate. I can't seem to fill...
Hi Jennifer, I am going to try and e-mail this as a word file later today so hopefully you will be able to open it then write in it and e-mail it back (In case...
Alison, I was wondering where you found those specialized clothes? We have been looking for a better way to dress our Micah and it has become a little...
Hi Rachel, We have a company over here called Rackety's under the website www.tanniandanni.com and the vests I got Niamh were called "Joey vests" but they do...
Finally - I think I've cracked it! Please find attached the "old word" version of the questionnaire - I think it should be good for everyone but obviously let...
hi again, i just saw this message & wanted to reply as both Luke & Freyja did the same thing. at the age they started seizing (3 & 5mths) was when the...
Allison, You are so thoughtful. Thank you so much for thinking of my Micah and wanting to share. You are amazing to be thinking of how to give to others...
Allison, I am sorry to say that I still could not open the attached file. However my husband helped me out. I copied the questionare to a word file. Now I...
Just realized that I didn't reply either - sorry! Niamh's seizures started at 7 weeks and we have always thought they only lasted 10-20 seconds although she...
Hi everyone. ON 3/28/09, I will be in Washington DC walking for Team Justin in the National Walk for Epilepsy. All donations support the Natl Epilepsy...
Hi everyone. ON 3/28/09, I will be in Washington DC walking for Team Justin in the National Walk for Epilepsy. All donations support the Natl Epilepsy...
Hi everyone. ON 3/28/09, I will be in Washington DC walking for Team Justin in the National Walk for Epilepsy. All donations support the Natl Epilepsy...
... just letting you know we are finally home but sadly still with the tube in.Freyja loves her solids but we are having trouble with drinking so we are going...
Hey Everyone, I had a question about oxygen. I was interested in knowing at what time your children went on fulltime oxygen and what caused this. Micah's O2...
Hi Rachel, Niamh's sats used to be very up and down but she didn't go on continual oxygen until last summer (aged 4) after she had been heavily sedated in ...
Hi Rachel, Thank you so much for your thoughts. It will be one year on Sunday that Rylie passed away. We will be putting a memoriam in our local paper (The...
Hi Laura, It's good to hear from you, and congratulations, I didn't know you were expecting again! Quinn is a beautiful name and she really will be a gift from...
Hi Nikkie, I am so excited about your little one on the way! I hope that your labor is quick and all goes well. We started monitoring Micah for oxygen after we...
Nikkie and Laura, Congratulations on the coming of your precious babies. I too hope that all goes quick and smooth for both of you. Laura, I will be thinking...
Laura, I wanted to also tell you congrats on your new little one... I had always thought that we would name one of our girls Quinn. All growing up I thought it...
Hey everyone! How did you get pulse oximeters for home use? What signs did you look for to know oxygen was low? I try to stay away from doctors as I have...
Hi All, Vanessa - the signs that oxygen level are low in general are the childs colour. If they look pale/grey/blue or if they are breathing more rapidly than...
Alison, I said something to our nurse about the xrays that we had done monday and she was never informed that we had requested them. Our doctor just happend to...
... i sent Luke to a special needs school in Bondi when he was 4.5yrs & it has been the best thing for him.he now attends & support unit attached to a public...
Hi Lee, Sorry to hear that you could not get the NGT out! Joce decided she didnt like hers anymore and ripped it out a couple of months ago. She loves solids...
Hi Alison, Thanks for your information and continued support. Joce seizures are very well controlled at the moment on the keto diet- instead of a bad day...
Hi Lee My family have no history of epilepsy either. Hope the gastrostomy goes well. Looking back, it did make our lifes much easier with Niamh and isn't as...
hi Tanya, i hear that Freyja has pulled her tube out 4 times now but i guess the gastro tube will be alot easier,whats Esp? isnt the screaming hard,i do...
Hi Laura, Congrats on your pregnancy! Great news! Joce stats still seem to be fine at the moment- she has never required oxygen. (she is 18 months old). Sorry...
Hi Tanya, Other than sedation (buccal midazolam or chloral hydrate) has anyone ever considered it could be her feed? You could try all sorts of things with...
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