enigma Posted September 9, 2008 Share Posted September 9, 2008 I've been posting here for a few weeks, but haven't properly introduced myself yet, because I tend to be somewhat reserved and guarded. But the time has come. I've been married for 15 years, and we have two children. My 9yo son is medically complex and has educational issues that we're still sorting out. My 7yo daughter is healthy and precocious. We were leaning toward homeschooling when I was pregnant with our son. After he was born and diagnosed, we decided to definitely homeschool. But by the time he was school age, I was burned out from the medical issues, and we put him in public school. He did homebound for kindergarten, and classroom for 1st grade. Our daughter also went to ps for kindergarten. Ps was a miserable experience for our entire family, and was just what I needed to realize that, exausted as I was, even *I* could do better than this. And that actually gave me a second wind. So we've just started our second year of homeschooling, using TWTM as our guiding star. My son's medical and educational funkinesses were caused by a genetic deletion. He's missing some genes on chromosome 22. This condition is known by several names: 22Q11 Deletion Syndrome, Velo-Cardio-Facial Syndrome, and sometimes DiGeorge Syndrome. If you're curious about this, please see http://www.vcfsef.org/ . He is scheduled for a balloon angioplasty this Wed morning at Boston Children's hospital. So if any of you wouldn't mind praying for his proceedure, and safety travelling back home to NC, I would appreciate it. My daughter and I stayed home this time, and we're taking the week off school since brother isn't here. We had a nice candlelight dinner together last night, to make this time special. We roasted a pair of rock cornish games hens, made chocolate chip cookies for dessert, and sipped our milk from stemware. It was very cool. Nice to finally "meet" all of you. ETA: For those of you interested, 22Q Deletion Syndrome / DiGeorge causes a particular facial "look." It's not as obvious as Downs Syndrome, but it's there if you know what to look for. http://www.22q.org/ has pictures of a number of 22Q kids. Some of them look like they could be my son's siblings. Quote Link to comment Share on other sites More sharing options...
laylamcb Posted September 9, 2008 Share Posted September 9, 2008 Welcome to you! And here's a :grouphug:, too, for all that you're dealing with at home. I'm sending up a little prayer *right now* (well, as soon as I finish typing this!) for you and your son. :001_smile: Quote Link to comment Share on other sites More sharing options...
BMW Posted September 9, 2008 Share Posted September 9, 2008 It's very nice to meet you! I love your line: lnnocence is a virtue; ignorance is a vice. They are not synonyms. Bee Quote Link to comment Share on other sites More sharing options...
katalaska Posted September 9, 2008 Share Posted September 9, 2008 Thanks for posting the link about 22 deletion. I am a former public school special education teacher and one of my students had severe disabilities that were never diagnosed but I always wondered if DiGeorge Syndrome might fit. Reading that fact sheet makes me think so even more. She was one of my favorite students (and the reason I chose the first class I ever taught--there were three openings in the school that year and I was offered first pick of the three classes). :001_smile: I hope your son does well in surgery Wednesday--sending hopes and prayers your way for that. I hope you've visited the Special Needs Board here. I've spent lots of time asking questions and sharing experiences there myself. It's a friendly and helpful place for navigating homeschooling kids with special needs. Quote Link to comment Share on other sites More sharing options...
sleepy Posted September 9, 2008 Share Posted September 9, 2008 Welcome! :001_smile: I hope your son's surgery goes smoothly tomorrow. :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted September 9, 2008 Share Posted September 9, 2008 Welcome and thanks for the introduction! I'll be praying for your son tomorrow morning. Quote Link to comment Share on other sites More sharing options...
PinkInTheBlue Posted September 9, 2008 Share Posted September 9, 2008 Welcome! Thank you for introducing yourself. It is nice to meet you. :) Many thoughts and prayers for your family and especially your son. Please keep us updated when you know something. Quote Link to comment Share on other sites More sharing options...
Laurel Posted September 9, 2008 Share Posted September 9, 2008 :seeya: I'll keep you and your son in my thoughts tomorrow. Hope all goes smoothly. Quote Link to comment Share on other sites More sharing options...
Heather in the Kootenays Posted September 9, 2008 Share Posted September 9, 2008 Welcome. Hope all goes well for your son. Quote Link to comment Share on other sites More sharing options...
sweetTN Posted September 9, 2008 Share Posted September 9, 2008 Welcome! Will keep you and you ds in our prayers:grouphug:Let us know how everything turns out. I love your little candlelight dinner with dd! I do the same with my dd, but not nearly often enough. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 9, 2008 Share Posted September 9, 2008 Welcome! Quote Link to comment Share on other sites More sharing options...
Beth in OH Posted September 9, 2008 Share Posted September 9, 2008 Welcome, and thanks for the link. I love it when someone shares knowledge--I benefit enormously. I had never heard of this syndrome before. I hope you'll feel free to jump in and post! Beth Quote Link to comment Share on other sites More sharing options...
Elisabeth in IL Posted September 9, 2008 Share Posted September 9, 2008 Welcome! Enjoy this time with your dd knowing that many of us will be praying for your son and his surgery tomorrow. Quote Link to comment Share on other sites More sharing options...
keroro Posted September 9, 2008 Share Posted September 9, 2008 Welcome to the forum. :001_smile: I am praying for you and your son right now. :grouphug: Quote Link to comment Share on other sites More sharing options...
Elm in NJ Posted September 9, 2008 Share Posted September 9, 2008 Welcome. Quote Link to comment Share on other sites More sharing options...
OnTheBrink Posted September 9, 2008 Share Posted September 9, 2008 Welcome! Praying for your son's procedure and for traveling mercies. :grouphug: Quote Link to comment Share on other sites More sharing options...
Adrianne Posted September 9, 2008 Share Posted September 9, 2008 I've been posting here for a few weeks, but haven't properly introduced myself yet, because I tend to be somewhat reserved and guarded. But the time has come. I've been married for 15 years, and we have two children. My 9yo son is medically complex and has educational issues that we're still sorting out. My 7yo daughter is healthy and precocious. We were leaning toward homeschooling when I was pregnant with our son. After he was born and diagnosed, we decided to definitely homeschool. But by the time he was school age, I was burned out from the medical issues, and we put him in public school. He did homebound for kindergarten, and classroom for 1st grade. Our daughter also went to ps for kindergarten. Ps was a miserable experience for our entire family, and was just what I needed to realize that, exausted as I was, even *I* could do better than this. And that actually gave me a second wind. So we've just started our second year of homeschooling, using TWTM as our guiding star. My son's medical and educational funkinesses were caused by a genetic deletion. He's missing some genes on chromosome 22. This condition is known by several names: 22Q11 Deletion Syndrome, Velo-Cardio-Facial Syndrome, and sometimes DiGeorge Syndrome. If you're curious about this, please see http://www.vcfsef.org/ . He is scheduled for a balloon angioplasty this Wed morning at Boston Children's hospital. So if any of you wouldn't mind praying for his proceedure, and safety travelling back home to NC, I would appreciate it. My daughter and I stayed home this time, and we're taking the week off school since brother isn't here. We had a nice candlelight dinner together last night, to make this time special. We roasted a pair of rock cornish games hens, made chocolate chip cookies for dessert, and sipped our milk from stemware. It was very cool. Nice to finally "meet" all of you. Welcome, nice to meet you! :grouphug: God bless you for hs your son! God has given you a special job. I look forward to getting to know you. Quote Link to comment Share on other sites More sharing options...
Brindee Posted September 9, 2008 Share Posted September 9, 2008 May God richly bless your family! I am praying and will continue to pray! Yes, please let us know how things go! Oh, and thanks for thie info. on that syndrome, that's good info.! Quote Link to comment Share on other sites More sharing options...
Jennifer3141 Posted September 9, 2008 Share Posted September 9, 2008 Welcome and you and your family are in my thoughts. Jen Quote Link to comment Share on other sites More sharing options...
enigma Posted September 10, 2008 Author Share Posted September 10, 2008 My 9yo son had a balloon angioplasty this morning in Boston. My husband just called to say that they're finishing up now. They got enough benefit to hold him for a while, but not as much as they had hoped. The arteries that come from the lungs into the heart join together and enter the heart as one. They form a Y shape. He was born missing these arteries. He had some extra tiny arteries between the lungs and heart that were misplaced. The surgeon took the two largest of these, joined them, and made an artificial conduit to form the trunk of the Y. The conduit has absorbed calcium and hardened. (We were actually expecting this.) The conduit is approaching the end of its usefulness, and will need to be replaced within the next two years. That event will be his third open-heart surgery. Thank you for your prayers, kind thoughts, and concern. If all goes well from here, he should be released from the hospital tomorrow and on his way back home to NC. Quote Link to comment Share on other sites More sharing options...
Country Girl Posted September 10, 2008 Share Posted September 10, 2008 :grouphug: Quote Link to comment Share on other sites More sharing options...
Part-Time Homeschooler Posted September 10, 2008 Share Posted September 10, 2008 I will be praying for your son! :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 10, 2008 Share Posted September 10, 2008 I'm glad that they are finishing up the surgery. Praying for his recovery. :grouphug: What a bummer that it will only be a temporary fix. Quote Link to comment Share on other sites More sharing options...
Elisabeth in IL Posted September 10, 2008 Share Posted September 10, 2008 I'm glad he did well and sorry that it wasn't as much as they had hoped for. Have you and your daughter been having that special mother/daughter time you mentioned before? Quote Link to comment Share on other sites More sharing options...
tinag Posted September 10, 2008 Share Posted September 10, 2008 :grouphug: Praying for you all. Quote Link to comment Share on other sites More sharing options...
laylamcb Posted September 10, 2008 Share Posted September 10, 2008 Praying here, too. :grouphug: Quote Link to comment Share on other sites More sharing options...
Zelda Posted September 10, 2008 Share Posted September 10, 2008 :grouphug: Quote Link to comment Share on other sites More sharing options...
sarahli Posted September 10, 2008 Share Posted September 10, 2008 :grouphug: Quote Link to comment Share on other sites More sharing options...
enigma Posted September 11, 2008 Author Share Posted September 11, 2008 I'm glad he did well and sorry that it wasn't as much as they had hoped for. Have you and your daughter been having that special mother/daughter time you mentioned before? Yes, we had our special dinner, and we are continuing to special things each day. She even had me out in the kiddie pool with her for a little while yesterday. :blushing: Quote Link to comment Share on other sites More sharing options...
enigma Posted September 14, 2008 Author Share Posted September 14, 2008 Husband and son are home safe. Son has a miserable, *miserable* rash and fever. He's allergic to something they exposed him to, but we're not sure what yet. Immunology guy is investigating. He also blistered under some tape in his groin area and on his thighs, and the tops of the blisters came off with the tape. Skin is raw and oozing. But he's home safe, and it's over. Just needs his skin to heal up. So thanks for the kind thoughts, prayers, etc. Quote Link to comment Share on other sites More sharing options...
Mom to Aly Posted September 14, 2008 Share Posted September 14, 2008 :grouphug::grouphug:All my best wishes and prayers for a speedy recovery for your son! You sound like a very special and brave family. Quote Link to comment Share on other sites More sharing options...
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