Guest guest Posted August 6, 2000 Report Share Posted August 6, 2000 Kim - you know, I never thought what it would've been like to have 2 Crystal's running around. It must really be hard, since it's identical twins. On the Infantile Spasms web site - the one set up by Jan Silberman, there are 2 sets of identical twin boys ( under 6 mos. old ) with Infantile Spasms.Both sets of parents are having a hard time of it all. Since all 4 children are involved, it's anyone's guess how they'll turn out developmentally. I think 1 set were premies ( I'm unsure about the second set ). So, you see, Kim, there are other parents out there in very similar shoes to you. I know one mom had such a bad pregnancy with her twins, that she's already decided not to have any more children ( & she's young ) ...After hearing their stories, I'm so relieved to hear that your Hunter came out of it unscathed.... Just had to share this with you... Kiss the boys for me... Lotsa luv to all, - Crystal's mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2000 Report Share Posted August 7, 2000 , I got Kennedy nipples that have three holes in them because she use to have problems also. The three holes helped alot and know she can us any kind of nipple. Just keep your chin up and keep working at it. and Kennedy > >Reply-To: polymicrogyriaegroups >To: " 'polymicrogyriaegroups' " <polymicrogyriaegroups> >Subject: Suggestions for >Date: Sun, 6 Aug 2000 16:07:29 -0400 > >, > > > One of our main challenges is feeding >[Raub Family] Teddy used to take an hour to feed 2 ounces, he's now down >to 20 minutes for 6. He also loves Ritz crackers and cheese doodles which >he self feeds. It does get better, but it often takes a long time. You >have been shown how to close you fingers under his mouth to help it to >close? Also you can poke extra holes in the nipples to make it come out >faster (but then again we don't want to choke anyone). Teddy's 3 now and >it making more/different noises and is learning to move his tongue around >more, I truly believe he will speak and eat but it will take a long time. > My speech therapist has been working on getting him to blow bubbles and >he >used to grab the wand and stick it in his mouth, now he actually leans >forward. He doesn't blow but he knows we do something by leaning forward >that makes bubble come out. We also have a family sport of blowing >raspberries on tummies. The twins blow them on their brothers tummies. So >that's giving Teddy the idea of blowing, thus getting voice control. > > > Another tough problem is the car seat > >[Raub Family] Regarding the car seat, we recently got a car TV (just to >entertain during long trips) but it was wonderful on our trip down and back >to DC last week. I know is little and thus sitting backwards, but I >suppose you could hook it up and have him see it in a mirror attached to >the chair he's facing? > > > For me, the hardest part of this new life, being the mom of a baby with >multiple > > handicaps, is bouncing back and forth between acceptance and hope. I'm > > feeling emotionally drained; I've had enough of crying and being sad, >and I > > do find a lot to enjoy in all my sons and life in general, but I still >can't > > say that I am emotionally ok. My husband and I are both so on edge and > > stressed out, I feel like any little thing would be enough to send us >all to > > the loony bin. > >[Raub Family] I almost added this part to my rollcall but didn't, but I >used to cry daily. Especially when I'd see Hunter do something that Teddy >couldn't do. I couldn't help but wonder what it'd be like to have 2 >Hunter's running around. How neat it would have been to have had trouble >telling them apart. I think it was when Teddy started walking that I >started to cry less, it gave me hope of a normal life. When I wrote my >rollcall I realized it'd been almost a month since I'd cried those tears of >grief. It does get better. > >Kim & Teddy Raub >(Who lives in CT with his identical twin, his 2 older brothers, and his >busy Dad. >He rides a big wheel and is learning to fight with his twin over the >matchbox cars.) > > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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