Hello Everyone It's that time again - I am now making a start on the next Information Point newsleter, which I am hoping to issue in early August. If you have...
Sorry everyone - this should have read April! _________________________________________________________________________________________________________ The...
he had it done today as well as his muscle byopsiy he manged very well he was in tears when he came round our boys are so brave i wouldnt have been able to go...
so glad to hear that Marconi's surgery went well ... did they have to intubate him to do the g-tube op? Kaden had his done very early so he was still intubated...
yeah there did while he was in surgery the only thing now is his sats are quite low not sure if its cause of the anersetic or because hes weak as hes not been...
that's great news. ... ____________________________________________________________________________________ Be a better friend, newshound, and know-it-all with...
That is great. Wishing him a speedy recovery. Sarah...
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Myotubular_Myopathy@y...
Mar 4, 2008 5:34 pm
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the Myotubular_Myopathy group. File :...
Hi guys. I know we all have concerns about people/kids with MTM/CNM undergoing anesthesia for surgery. I am happy to report that a group of health care...
I would ask them but I would say that having him drugged would affect that. I know when Kaden came out of his G-Tube operation they had him on Morphine and he...
Thank you all for your kind words of support, Marconi is doing well, I have received word that there is a chance that he could be home tomorrow, incidentally...
Sheallyn - I have recently joined this wonderful group and I believe the day I started reading posts was the day your sweet Kaden left us to be with others in ...
Hi Rachel we talked back in April/07 when my liitle one was @ Kaiser he had coded and was going to get a trach, hope you remember I've been wanting to thank...
My thought and prays are with you and your family. ... right ... fear ... maintain ... sending ... from ... to ... MTM. ... 31-08 ... seemed to ... MPLS ... ...
thanks so much Leslie, I appreciate it .. one day at a time for me right now. If you ever want to chat, let me know .. Sorry for your loss as well ... take...
Dear Sheallyn I feel for you at this terible time. I can understand how you feel about the washing of Kadens clothes. My son trent passed away at 5 years old...
marconi has come home today and doing well hes to be a lot happyier now hes home the nurses are coming on monday to check on him thanks everyone for your kind...
That's really wonderful news about Marconi - there's no place quite like home! So glad it all went very well too. Big hugs for Marconi, Wendy and family ... ...
Congratulations on getting to come home!! I am sure that he will rest better, feel more comfortable, and recover faster being in the comfort and familarity of...
hi everyone-- i know i'd posted a while ago that we were on the road home. right in the middle of all the arguing with insurance and arranging of nursing...
Hello All-- We've got a meeting with our geneticist next week, and I want to go in extra prepared. I know based on older messages i've read here that a...
i know its too soon to ask this question but just wanted to know if there in hospital as long when there change to a micky button marconi has to have one in 18...
Micky buttons are much easier to change than the g - tubes. You may change it, I have done it many times, the nurses were to scared to do it so I had to. I am...
if you guys are at home when it's time for Marconi to get his g-tube changed a public health nurse can come to your house and do it there ... There is no...
hi sheallyn we do have a temporary kit at home so if his g tube came out we have something to tempoary fix it it all new to us marconi having his g tube he was...
Rachel, Kaylee has a mickey button and we keep a spare here at the house. We also have a spare g-tube setup. If Kaylee's mickey comes out or malfunctions, we...
awww, that must be so nice for him to have that out .. I know babies don't seem to mind them but he's a big boy so it makes things different doesn't it? Best...
I meant to ask you Rachel, what does Marconi have? I just peeked at his photo's and he looks so strong and healthy! Love the one of him at the beach, sitting...
