Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Hi Narelle Sad to hear about the diagnosis. It will definitely get better as the days go by. But on a happy note " Thank God for Mosaic babies " they are so calm, loving and peaceful(until they turn two)! lol Our little one just turned two and she seems just as terrible as any two year old. Linette > > My name is Narelle and I live in Perth, Australia. My daughter Lily > was born on 20 Dec 07 and had MDS confirmed on 24 Dec. I am married to > and we have another daughter called Eve who is 17 months. Both > our girls are very beautiful and at the moment Eve is more of a handful > than Lily who is a very happy, placid little baby. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi Narelle Welcome to the group and congratulations on the birth of your daughter. What a lovely early Christmas present. My name is Fiona and my son Hunter was diagnosed with MDS at birth 13 weeks ago. I live in Melbourne. I know what you must be going through with about a million questions running through your head. Feel free to ask away as there is sure to be someone on the group that will be able to answer your questions along the way. This is all new to me as well. It's good that you have found this site so quickly. Fiona Mum to Hunter mds (3 months) New parent My name is Narelle and I live in Perth, Australia. My daughter Lily was born on 20 Dec 07 and had MDS confirmed on 24 Dec. I am married to and we have another daughter called Eve who is 17 months. Both our girls are very beautiful and at the moment Eve is more of a handful than Lily who is a very happy, placid little baby. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Welcome Narelle! My name is Sylvia Wormley. I live in Arizona with my husband Mark and 2 boys. is 14 years old and just started high school this year. is 8 years old and has MDS. He is in 2nd grade in a regular classroom. He does have a Para-educator and is pulled for Speech and LRC (Learning Resource Center) a few hours a day. I am also the IMDSA Family Connect Coordinator. I would like to invite you to join the Family Connect Program where you can be connected with other MDS families in your area or by the age of your child. You can go to the form directly by clicking on this link. https://imdsa.dabbledb.com/page/imdsa/0cf18f89-a719-43fd-b262-304294f36bb1. If you have any questions please feel free to contact me at worms62@.... Sylvia Wormley Family Connect Coordinator _____ From: MosaicDS [mailto:MosaicDS ] On Behalf Of greennarelle Sent: Saturday, January 12, 2008 12:35 AM To: MosaicDS Subject: New parent My name is Narelle and I live in Perth, Australia. My daughter Lily was born on 20 Dec 07 and had MDS confirmed on 24 Dec. I am married to and we have another daughter called Eve who is 17 months. Both our girls are very beautiful and at the moment Eve is more of a handful than Lily who is a very happy, placid little baby. .._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Hi Sylvia I coulnd't get this Family Connect link to work. How else can I register? Narelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Hi Narelle Just in case Sylvia is not on right now, you can go to http://www.imdsa.com/parent.htm to register for Family Connect. Feel free to browse through our whole site to find out all the information on MDS and everything that IMDSA has to offer! Kristy greennarelle wrote: Hi Sylvia I coulnd't get this Family Connect link to work. How else can I register? Narelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Narelle We live in Greensborough but will shortley be moving to Torquay as we are building a house there at the moment. My husband can't wait to move to the beach and go fishing and surfing every weekend. I have a feeling I won't see him much. ;o) I have family in Perth and we always head there every couple of years as well. How funny. We have been really lucky with Hunter so far as he hasn't had any health concerns. We are going to the Children's Hospital on the 20th Feb for his Echocardiogram and ECG. Our Paeds said she can't hear any problems with his heart but it's just to be sure. We have also been to a private Physio to get his tone checked out and I've also taken him to a Paediatric Osteo. They have both said his tone is great and he is doing everything at this stage that he should be doing like holding his head up, talking and smiling etc. Have you applied for your careers allowance. If not ring Centrelink and get them to send you out the forms. It takes a while to process but they will back date it from when Lily was born. Lily will also get a Health Care Card in her name. The careers allowance is $100 a fortnight. Also Medicare have a rebate scheme going on at the moment. It's called the EPS scheme and it's for things like Physio, OT, ST etc etc. This is for private sessions not Early Intervention stuff. I got a list of private Physios from my Early Intervention Intake Officer. I then went to my GP and got a referral for one of the practitioners. Now Hunter's Physio cost's $60 but you will get back $49 back each session from Medicare for up to 5 sessions in a calendar year. What you can also do is split the sessions between different services. So for example you could get Lily into 3 Physio sessions and 2 OT sessions. That's 5 for the year and they will all be rebated through the scheme. Any other private sessions after this you will just get the normal rebate from Medicare. Have you registered her for Early Intervention. If not get her WL. I don't know what Perth is like but Melbourne has a big waiting list. That's why I've gone to the private physio in the meantime as I have no idea when the WL will clear for EI and I wanted to get Hunter's tone checked out and learn what exercises to do, even at this early age. I think that's everything I can think of. If I think of anything else I'll let you know. If you've got any questions you are more than welcome to e-mail or call me direct. I'm registered with Family Connect so you can get my details from Sylvia if need be. Apologies to everyone else for such a long email. Fiona Mum to Hunter mds 3 mths New parent Hi Fiona Thanks for the congrats. I too am originally from Melbourne. I visit family there every couple of years. They all live out the end of the Eastern Freeway direction. Have you had any struggles with Hunter yet at this early stage? It's hard to know what to expect. Narelle (Mum to Lily 31/2 wks, Eve 17mths) Quote Link to comment Share on other sites More sharing options...
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