Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 JEnnifer,Jodi,and Thank you for the encourgement and help. The websites have helped a lot I have printed some of the information and mailed it to my mother and sister My sister as I have shared before is very young. I want only the best for Maddie. However ever since she was born and began getting all the medical problems.. her mother and father treated her differently, it's as if they were afraid of her they would leave her in her bouncer or swing because Maddie didn't cry that often or babble or what not they often treated her as she didn't exists and that saddens me very much! I am trying to educate her so that Maddie doesn't have problems later in life. Even now Maddie isn't very social she loves my mother and only will respond to a few people. It's like she is in her own world. She is going to be two on the 23rd and I am concerned about her language development and social skills. Am I just paranoid?, should I worry? What is the typical age that RSS children speak, do some never speak? IF they don't teach maddie sign and work with language now how far behind in speech will she become? I have encouraged her to take Maddie back to the audiologists but nothing has become of that.. I wished so very much that my family could attend the conference but as I figured they would not. I also stress and encourage my sister to take a sign class at the local college, but as usual nothing has become of that. I really wish I lived closer to Maddie because I sign fluently this 6 hour distance breaks my heart. I guess I am just really frustrated with the whole sistuation, I know I am not Maddie's mother but sometimes I wish I were. I worry a lot about Maddie and her development. Any advice? > > > Hello to all sorry I haven't posted in a while just > > really busy > > getting wedding things together. Only 8 weeks left! > > Anyways just wanted to give an update on Maddie. > > While I shared how > > exciting it was that my sister was starting sign w/ > > maddie I found > > out the other day that they have stoped because they > > feel it isn't of > > any help right now. My sister says maddie will say > > NO and mama.. but > > my mother tells me maddie doesnt' speak at all. I > > have encouraged my > > sister to not get discouraged as it takes patience > > and time. I am at > > loss for words and very upset because I know how > > important it is for > > maddie to be able to communicate with the world. > > Does anyone have or know of anywhere I can get my > > hands on articles > > about signing to children and the benefits so that I > > may help to > > better educate her not only for her sake but for > > Maddie's; or any > > books that maybe of use? Please Help!!!!! THanks > > all--Steph > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 You are NOT being paranoid and I think you have hit on some very important things and behaviors in your latest message. Did you know that there is a relatively high incidence of PDD (pervasive development disorder) in RSS kids? What you are describing relating to Maddie's social skills and lack of communication are good indicators that she is at risk. She really should be enrolled in an early intervention program. The program is free and usually offered through the public school system. Once Maddie turns three, she would qualify for a preschool handicapped program and she would receive more services while in a school setting. Then she would be watched over and monitored for as long as she needs services. I'm not trying to scare you, but you need to be aware of the chances and risks. Please let me know if I can help you further. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 hey everyone!! well chrissy took maddie to the ER, they gave her fluids and finally agreed that maddie needs her tube all redone. they sent her home though because there was not a surgeon there that could do it and told chrissy with all the sick kids that were in the hospital already it would be better for her to go home. they also said that every time she drinks she was probably aspirating and could possibly get pneumina (sp). they told chrissy to call the surgical center in the morning for an appt. she tried this morning and couldnt get anyone. so she called dr h and is now on her way to nyc!! dr h told her to not give maddie anything to eat, drink or by tube just some glucose since her sugar was down and to get to nyc asap!! keep her in you thoughts and prayers and i will keep you posted!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Jodie - thank you so much for keeping us posted. We've been holding our breath wondering how Maddie was doing - we have been so concerned. I'm so happy to know she is seeing Dr. H. Now, we can breath a little easier. Thank you again. - H > hey everyone!! > well chrissy took maddie to the ER, they gave her fluids and finally > agreed that maddie needs her tube all redone. they sent her home > though because there was not a surgeon there that could do it and told > chrissy with all the sick kids that were in the hospital already it > would be better for her to go home. they also said that every time she > drinks she was probably aspirating and could possibly get pneumina > (sp). they told chrissy to call the surgical center in the morning for > an appt. she tried this morning and couldnt get anyone. so she called > dr h and is now on her way to nyc!! dr h told her to not give maddie > anything to eat, drink or by tube just some glucose since her sugar was > down and to get to nyc asap!! keep her in you thoughts and prayers and > i will keep you posted!! > > jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Jodie Thanks for updating us. It's so hard to get over to the web site while you wait for the pages to come up........I shall keep them in my prayers. Has Dr. H. been in contact with them since that first day? Thanks again Jodie. Debby B. Maddie update hey all!! i talked to chrissy last night by phone. she hasnt been able to call any one because her cell phone battery was dead and Princess wouldnt let her out of the room to use the computer!! she is still in the hospital, but in a reg. room out of special care. they did a GI study and said her tube was fine, the guy say he didnt understand why she is throwing up. they get back upstairs from the study and she throws up all over the place (that was from just a little dye). they said her nissan needs to be redone, bt her iron levels are so low (which they dont understand why) so the surgeon was honest with chrissy and said that they are afraid that if they open her all up to do the nissan that she wont be able to handle the amount of blood loss from the surgery. so that wont be an option. they need to keep her hooked up to a vent while she is on feeds or she throws up. chrissy's GI is still out of town, so they have to wait until she gets back and talks to dr h to see what they can do. they tried putting a small amount of corn starch in her tube again so she could be off the pump for her 4 hours a day but then her BS shoots up to the 200's. chrissy is very upset and doesnt know what to do for this poor little thing. the only good thing is that madiie is in good spirts and is acting like herself. keep them in your thoughts and prayers!! chrissy is hoping to get discharged today if she can kepp i believe she said 50 or 60cc down. jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 jodie, please pass on to chrissy that i have ben thinking alot about them, i sure hope they find there answers. i will keep them in my prayers cara mom to jacob Jodie wrote: hey all!! i talked to chrissy last night by phone. she hasnt been able to call any one because her cell phone battery was dead and Princess wouldnt let her out of the room to use the computer!! she is still in the hospital, but in a reg. room out of special care. they did a GI study and said her tube was fine, the guy say he didnt understand why she is throwing up. they get back upstairs from the study and she throws up all over the place (that was from just a little dye). they said her nissan needs to be redone, bt her iron levels are so low (which they dont understand why) so the surgeon was honest with chrissy and said that they are afraid that if they open her all up to do the nissan that she wont be able to handle the amount of blood loss from the surgery. so that wont be an option. they need to keep her hooked up to a vent while she is on feeds or she throws up. chrissy's GI is still out of town, so they have to wait until she gets back and talks to dr h to see what they can do. they tried putting a small amount of corn starch in her tube again so she could be off the pump for her 4 hours a day but then her BS shoots up to the 200's. chrissy is very upset and doesnt know what to do for this poor little thing. the only good thing is that madiie is in good spirts and is acting like herself. keep them in your thoughts and prayers!! chrissy is hoping to get discharged today if she can kepp i believe she said 50 or 60cc down. jodie c Quote Link to comment Share on other sites More sharing options...
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