tag:blogger.com,1999:blog-2893945840983645141.comments2023-09-20T07:42:38.620-07:00The Ins and Outs of 1p36 parenting~Phoenix~http://www.blogger.com/profile/10761991046739773406noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-2893945840983645141.post-25025259619486486512011-11-16T06:52:06.456-08:002011-11-16T06:52:06.456-08:00Awesome to hear how well she is doing. Love to he...Awesome to hear how well she is doing. Love to hear that she is chabbering too. Taylor started like that and now sentences spit out here and there all the time now. It will come just keep encouraging it. Love to hear that she is loving school too. Your an awesome mom!!Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-48487369015354559892011-08-02T09:14:52.962-07:002011-08-02T09:14:52.962-07:00Oh and congrats on being able to stay home with yo...Oh and congrats on being able to stay home with your kids. It does take some getting used to. But enjoy as much as you can all the time you get to spend with them.Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-22548523851300826922011-08-02T09:13:13.321-07:002011-08-02T09:13:13.321-07:00Hey I totaly know what your feeling with the escap...Hey I totaly know what your feeling with the escaping the house and the water thing. Taylor gets out all the time. We have chains on the top half of all the doors. She gets out and goes everywhere. I don't have a pond but any time we are around water I know she will just jump in. Thank heavens for your neighbors. My sister in law lives next door and always calls when Taylor is outside just to make sure I know shes out again. lol I'm counting down the days until school starts cause there is never a dull moment at home. Hang in there.Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-63596533754196318392011-01-27T21:14:41.545-08:002011-01-27T21:14:41.545-08:00So cute. That's so awesome having her do the ...So cute. That's so awesome having her do the valentines, great idea. Taylor seems to just keep growing taller too. It is so weird. I just love these little kidos.Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-83820410155858420372010-11-10T11:51:07.333-08:002010-11-10T11:51:07.333-08:00Well said, Phoenix. That's a great perspectiv...Well said, Phoenix. That's a great perspective!Natehttps://www.blogger.com/profile/17394193811848413412noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-60606004900726018842010-11-08T07:09:02.475-08:002010-11-08T07:09:02.475-08:00Love it...thanks for sharing!Love it...thanks for sharing!sherryhttps://www.blogger.com/profile/14426028643840234125noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-67719627544921476912010-01-31T12:14:09.456-08:002010-01-31T12:14:09.456-08:00Here is a link to more information about the genet...Here is a link to more information about the genetics of 1p36 Deletion Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/1p36_Deletion_Syndrome/704. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNAshashankhttps://www.blogger.com/profile/00619194751575071216noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-71935028728487243452009-09-15T20:42:48.952-07:002009-09-15T20:42:48.952-07:00Phoenix
Tru looks like she is doing so well! She s...Phoenix<br />Tru looks like she is doing so well! She sure is adorable. Gavin is in pre-school again this year and loves it.<br /><br />Kathy (Gramma to Gavin 4 yrs.)Kathyhttps://www.blogger.com/profile/03390023065823794593noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-83545193038392787492009-02-12T11:30:00.000-08:002009-02-12T11:30:00.000-08:00Hey I am so excited that the tubes are making a di...Hey I am so excited that the tubes are making a difference. They have been life savers for Taylor. She just had her 4th set put in last week. Yes we probabley will be doing this about every 2 years or so because her ear canals are so small too and it just helps her so much too. So be prepared if you have to keep continuing to do it. BUT so WORTH it. Glad she is doing so well. Take care. JennyJennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-1882902445933332172009-02-08T19:36:00.000-08:002009-02-08T19:36:00.000-08:00Hey sure looks like you quit blogging about the sa...Hey sure looks like you quit blogging about the same time as me. LOL would love to see some pics.Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-80065321244453030052008-11-30T07:50:00.000-08:002008-11-30T07:50:00.000-08:00I so want one of those shirt. I'm gonna keep my ey...I so want one of those shirt. I'm gonna keep my eyes open for it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-34060530244230239462008-11-19T21:13:00.000-08:002008-11-19T21:13:00.000-08:00How nice to be able to sit through a movie togethe...How nice to be able to sit through a movie together. That is wonderful. Good luck with Tru's IEP. They are usually pretty fun. lol The do sell t shirts that say IEP and underneath it says Involved Educated Parent. When Josh was in public school I always thought about buying him one and sending him to school in it on IEP day. Good Luck!Josh's Worldhttps://www.blogger.com/profile/11713349718083681423noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-41036658317403756182008-07-16T12:38:00.000-07:002008-07-16T12:38:00.000-07:00I don't have a picture of the bracelets, sorry :( ...I don't have a picture of the bracelets, sorry :( They are the soft rubber ones that are all over the place now a days. You can pay with a check, money order, & I'm setting up arrangements for payments through paypal. Depending on how many you are wanting to order I can wait on the payment until you receive them. Any more then 3 in an order & I'll have to have the money up front. Please feel free to e-mail me phnx_schaefer@yahoo.com with any questions or orders~Phoenix~https://www.blogger.com/profile/10761991046739773406noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-89548827497596233642008-07-16T06:48:00.000-07:002008-07-16T06:48:00.000-07:00Do you have a picture of the bracelets? Are they ...Do you have a picture of the bracelets? Are they the soft rubber type that are all over the place now a days? And do we just send a check or how do we pay for them?<BR/><BR/>Josh (Misha's Dad)Candle Endshttps://www.blogger.com/profile/14260392147611209077noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-66584904446305567532008-07-14T20:57:00.000-07:002008-07-14T20:57:00.000-07:00Hey! Just wanted to let you know,the day Me and Pa...Hey! Just wanted to let you know,the day Me and Papaw babysat her from 1:00 pm until 11:00 pm that night of your graduation,We never had a one problem out of her,other than the normal turning the tv up&down and changing the channels. No fits,no screaming,she was the perfect lil angel that day into the night. Oh,but I do know the screaming fits well also,tear my nerves up like they do yours,but one of these days,we're gonna sit back&laugh about it when she's a teen,gonna have to give her a lil teasing over that! Love ya!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-14475945157583558302008-07-02T23:24:00.000-07:002008-07-02T23:24:00.000-07:00Hey Phoenix my name is Jenny Gillins and I am from...Hey Phoenix my name is Jenny Gillins and I am from Idaho I have a daughter Taylor (1p36 age 5). I just stumbled across your blog from Nate hanson's and I am laughing and crying while reading this my feelings are so the same about all of this. I have a blog too. mine is : alwaysachucklewiththree.blogspot.com <BR/>I definatly want to talk to you. How old is tru? She is adorable. I am curious how much she babbles and talks. Oh I have so much to talk with you about. email me your numer if you want to talk and I will call you. email is: jjgillins@msn.com<BR/>you sound so amazing and tru too!!!Jennyhttps://www.blogger.com/profile/16320049164228657739noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-33029950810218540522008-06-26T06:22:00.000-07:002008-06-26T06:22:00.000-07:00To Debbie--Unfortunately Indiana is far behind in ...To Debbie--<BR/><BR/>Unfortunately Indiana is far behind in the area of Special Needs in the school system. There is legislation going on right now to change that, so like so much else, we wait & see. Next year should be better because of the new school & I'm hoping that the legislation goes through and into affect in the next two years before Tru goes back into the public school system. I vote so all I can do is hope now.<BR/><BR/>Phoenix, mom to Tru, 1p36 deletion~Phoenix~https://www.blogger.com/profile/10761991046739773406noreply@blogger.comtag:blogger.com,1999:blog-2893945840983645141.post-58423051303737178302008-06-25T21:34:00.000-07:002008-06-25T21:34:00.000-07:00Phoenix--I'm not sure where you live, but here in ...Phoenix--<BR/>I'm not sure where you live, but here in Oklahoma, kids with special needs get the same opportunities that typical kids get. They may need parental supervision, but they would still get to go. Does Tru have a teacher's assistant at school?<BR/><BR/>Debbie, mom to Jacoby, -1p36Debbiehttps://www.blogger.com/profile/05199601370844420916noreply@blogger.com