Hi, Good luck with the wean and seizure control.Harry was taken off the diet quite quickly in the end because his vommiting and diahoreah were so bad. We never...
Hey there! I will definately let you know how our visit to Tampa goes. We moved to Florida from Lansing Michigan in 2001 and we love it here! Although you...
Hiya, Harry is not well at all. He is just not himself and seems to be losing weight daily. I got his weight wrong in my post yesterday. He is actually 15.4kg,...
Hi Denise, Sorry to hear harry is still not any better. I know the weight loss thing is a real worry. I am sure you have tried everything with regards to the...
Hi Alison, We go mostly by his SATS reading, and when they drop to 88ish we use the oxygen. We also go by how hard he is working to breathe. when he is...
Hi Everyone, Thanks for all the sharing of information over the past few days. All the children are going through different stages and it is very beneficial...
Hi Alison. Good luck with the wean off the keto diet. Hopefully because Niamh has been on it for a while and seizure free for so long things will go...
Denise, I'm so sorry about Harry. I feel so bad that he is going through such a rough time. Even when Kristan was at her worst, it was nowhere near what poor...
Denise, It always pains me to hear when Harry or any of our kids aren't doing well. I hope that you're all hanging in there as best as you can. Harry and...
Sorry it has taken me so long to respond to you. I have been sick with a horrible flu going on almost 2 weeks now. I have been reading everyones posts and...
Hi Laura, Thanks so much for you lovely message, its good to know you are thinking about Harry. I am the same and am constantly thinking about the other...
Hi, Sorry to hear that you have been ill, its so much harder coping with normal family day to day activities when your not feeling to good isnt it. I just...
Hi Denise and all, Niamh is not well at the moment. She was really struggling to breathe last night and her sickness has started again - I thought she may be...
Hi Alison Im so sorry to hear about Niamh and so shocked at how low her sats are!! Harrys have never been that low before.His heart rate was 165 today and that...
-Denise and Allison, So sorry to hear what a difficult time both Harry and Niamh are having. My heart aches for them and for each of you. I will be praying...
Hi Alison, My thoughts are with you, Niamh and family. I hope her oxygen sats and breathing are improving. Also hopeful that her temp has come down. Thanks...
Thanks Mary - yes its Conor's birthday next sat 16th Feb. Can't really believe he is 1 already! Niamh is still on oxygen and has been sleeping most of today...
Hi Alison Harrys day has been much the same as niamhs. He has psudamonas again.The drs started him on cipro today and we came home from hospital at tea time....
Denise, Alison and all... Thanks for sharing with us how your babies are doing. It always amazes me with the amount of love and continual care that goes into...
I would love to hear how your pursuit with the holistic doctor goes. THis is something we have gathered info about and researched a little but not ever really...
Jennifer, This holistic thing is so I don't know... werid, but we are hoping for the best and the person really cares about Micah and has mentioned all of your...
Hi Alison, I have been thinking about Niamh and wondering how she is doing. Harry has improved a little and his breathing is a bit easier now. Speak soon Love...
Hi Denise & all, Niamh is off her oxygen again and is well on the road to recovery from her chest infection thank goodness! Glad to hear that Harry is...
-So glad to hear that Niamh is doing better. I have been praying for her and was concerned because we had not heard. Thank God she is off the oxygen and...
Hi Alison, Im so glad to hear that Niamh is improving, they are such fighters arnt they? Is she off the oxygen completely? Harrys not off his yet. We are...
Hey everyone, I am glad to hear Niamh is doing better, and hopefully Harry will be doing great soon too! Alexander has been in the hospital with his first...
Hi Vanessa, Im so sorry to hear about Alexander. How old is he now? Harry started getting pneumonia from about 2.5yrs old. Its interesting what you say about...
Vanessa, I am sorry to hear that your little one is also sick with pnemonia. The reality of this looming illness is so evident as I read how the other little...
Micah also has less seizures when he is sick. Especially if he has a fever he may have no seizures for days. We also can tell when he is doing better because...
Although Niamh is seizure free at the moment her movement disorder (dystonic spasms and shaking) almost completely disappear too when she is ill?! Our...
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