tag:blogger.com,1999:blog-3681632491042947805.post7959972464998428318..comments2023-10-21T06:45:27.501-04:00Comments on Blogging Hallie and Lea's Life: Paperwork, Scattered Thoughts, and Random (well, not so random) fearsabbyhttp://www.blogger.com/profile/03403145277760263562noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-3681632491042947805.post-25093998345298052532008-01-30T10:29:00.000-05:002008-01-30T10:29:00.000-05:00Abby: You and Sharon are doing such an amazing job...Abby: You and Sharon are doing such an amazing job with Hallie. I know it is so easy to get bogged down with worry, but I know Hallie will continue to amaze everyone!<BR/><BR/>BTW, Cooper has JUST started talking more. I constantly worry about his speech, but I feel like everyone just says "he does well for a 25-weeker." Honestly, in the last month he has really taken off with his speech. I try not to obsess about it, but I'd be lying if I say I don't worry. <BR/><BR/>We still guess a lot of the time to figure out what Coop is trying to "tell" us. It's obvious he's delayed, but I am encouraged that he's starting to make progress. <BR/><BR/>I am hoping that Hallie will do the same, with time. I'm sorry that this is one more thing to add to your list of concerns. It's just another reminder of how cheated preemie parents are. There is literally ALWAYS something to worry about. <BR/><BR/>Keep your chin up, you have an amazing little girl!Sarah Furloughhttps://www.blogger.com/profile/10930183175998340048noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-40348059211904278262008-01-29T05:03:00.000-05:002008-01-29T05:03:00.000-05:00Hallie is so wonderful. It must be terrifying to f...Hallie is so wonderful. It must be terrifying to face such an unknown future, but she is a survivor! She will bring you joy and happiness no matter what she can verbalize, and the rest of her personality will fill in where her words leave off! thinking of you three and hoping for some comfort and answers for you! Sara CohenSara Cohenhttps://www.blogger.com/profile/02319206125944014701noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-5616457729283797302008-01-28T21:47:00.000-05:002008-01-28T21:47:00.000-05:00I find the loss of control in parenthood the harde...I find the loss of control in parenthood the hardest to deal with - I'm so tired of knowing I have no/minimal control over certain aspects of her development and I don't know if I"ll ever come to terms with that.<BR/><BR/>I hope you get so good help from CHOP and that your fears will be lessened :-)Jenniferhttps://www.blogger.com/profile/13866020541016760651noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-82313234677136408212008-01-28T21:06:00.000-05:002008-01-28T21:06:00.000-05:00I've come to find that the unknown is often one of...I've come to find that the unknown is often one of the most suffocating presences in the micro-world. Hallie is everything you said -- bright, social, AMAZING. This evaluation will get you assitance and possibly *some* answers but just as you said, it could be some time before the outcome of her speech issues are totally known. I know that the two of you will be the best advocates that Hallie could ever have in this entire world. <BR/><BR/>Between 12-18 months Eli was having issues with speech (well more issues between those times). His therapists had us take pictures of as many items in our household including people in our lives, food, furniture, videos, characters, utensils, etc. I then had them printed out, laminated, and binded into a book. We worked with that book day in and day out naming and identifying the items for months on end. Eventually progress was made. This type of picture book could be helpful to ease some of the frustrations Hallie is having in her communication. We even took pictures of Eli sleeping, eating, crying, laughing, playing, reading, etc so he could choose what activity he felt like doing when he couldn't verbalize it. <BR/><BR/>If you need anything don't hesitate to ask. (((HUGS)))Kelliehttps://www.blogger.com/profile/00472980944808723575noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-15576289449249254582008-01-28T20:41:00.000-05:002008-01-28T20:41:00.000-05:00Have they mentioned the possibility of apraxia bei...Have they mentioned the possibility of apraxia being connected to the feeding issues? I remember when Mo began therapy they asked us if she had problems eating, nursing, etc - something about oral-motor apraxia in addition to the verbal. Mo's therapist now has her do a lot of mouth strengthening exercises like blowing bubbles, blowing through a straw, make faces in a mirror, & chewing various textures. She did not have feeding issues, but they said they're working to help her brain and mouth better communicate so she has more control over forming words...<BR/><BR/>But Mo's 4 now so of course a lot of that would have to come later for Hallie! :) Though I'm hoping by four she'll be a little chatterbox for you.Heidihttps://www.blogger.com/profile/05371671630524713784noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-23706274660611495052008-01-28T17:04:00.000-05:002008-01-28T17:04:00.000-05:00I have already thought a lot about the signs/symbo...I have already thought a lot about the signs/symbols and cards--Hallie is very visual (gets this from Sharon, I think) and can already tell us a lot that way. Even foodwise, now that she is interested in eating and drinking some things and definitely is getting hungrier (and lets us know by using the sign for 'eat'). I thought about either getting some of the cards that go with the Signing Time DVDs and having her learn both the spoken and the signed word or something like a home-made PECs board (maybe using laminated cards because otherwise she'd eat them!). She is still trying to communicate vocally--just not using any 'words' or even word-approximations that we understand (for the most part) except for a pop-out word or two -- and we're hoping that some of the lost words reappear soon.<BR/><BR/>Any advice that you have for us would be great!abbyhttps://www.blogger.com/profile/03403145277760263562noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-60155904366237697182008-01-28T15:29:00.000-05:002008-01-28T15:29:00.000-05:00Forgot to add that if you are wanting some online ...Forgot to add that if you are wanting some online sites for picture symbols, just let me know and I can get those together for you!Nancyhttps://www.blogger.com/profile/09683193254614726192noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-34014909492726040362008-01-28T15:27:00.000-05:002008-01-28T15:27:00.000-05:00"She is so social, so expressive, so amazing, and ..."She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her."<BR/><BR/>You've answered your own question. Those qualities about Hallie are exactly what will get her to socialize and communicate with others. The method? While that remains to be seen, you can bet it will happen! That's because Hallie has such a drive to communicate, and that persistence will force others to reciprocate communication with her. REgardless of the method.<BR/><BR/>Ultimately, your goal is communication, and that doesn't necessarily have to be speech. I have worked with loads of children who are nonverbal but have phenommenal communication skills. And they do so in a myriad of ways ranging from sign, to pitcures, to commincation devices. <BR/><BR/>Have you tried using pictures with her at all for communication? I did this when Caitlyn was around 18 months to 2 yearss old. She had virtually no speech, a few words here and there. But this child could understand every single word I said to her, she just couldn't get her mouth to do the same. I used picture symbols on everything in the house. Mainly the things that I knew Caitlyn would be requesting, for example, on the fridge there were small pictures of juice, milk, cheese, etc. All she had to do was point to the one that she wanted. On the cabinets there were pictures of crackers, cookies, etc. Same concept. I know Hallie isn't into requesting foods, but I'm just using that as an example. <BR/><BR/>Everytime she pointed to something that she wanted, I would say the word and have her repeat it. Even if it was only an utterance and not the actual word, I praised that for her. So she could understand the methods of communicating. <BR/><BR/>This saved me more melt downs than you can imagine. We went from having numerous tantrums throughout the day, to one or two that were behavioral and not a result of not being able to tell me what she wanted.<BR/><BR/>The symbols I used, I had access to through work. A program called Boardmaker by Mayer Johnson. So I didn't have to pay for it as it can be costly (around $400). But there are certainly programs that are available free online. Not to mention the fact that you can take pictures of objects, print them out and use those.<BR/><BR/>Hang in there! Hallie is still young and you are doing everything you need to be doing to get her communicating effectively.Nancyhttps://www.blogger.com/profile/09683193254614726192noreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-53043444858689807292008-01-28T10:25:00.000-05:002008-01-28T10:25:00.000-05:00Oh Abby - I feel for your frustration, and Hallie'...Oh Abby - I feel for your frustration, and Hallie's too. I'm not sure what the future holds, but you're doing exactly what she needs for now. It's hard not to worry about what life will be like for our little ones. We only want the best and the thought of anything less can bring me to my knees some days, but we will be there for them every step of the way, encouraging, praying, praising them for their accomplishments in life, because they deserve it all. <BR/><BR/>Hallie could be in any category you mentioned, but it's certainly too early to be worrying if it will be one or the other, although that's not something that is done easily. I'll be thinking of you...and your family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3681632491042947805.post-83228035698253950522008-01-28T10:21:00.000-05:002008-01-28T10:21:00.000-05:00I am just a lurker, but wanted to comment on your ...I am just a lurker, but wanted to comment on your post. Did you know that Signing Time! was started for the very same reasons you fear right now? Rachel and her sister started Signing Time! to help teach others how to communicate with Leah. Share your videos/dvds with your friends and family. Teach them along with you. <BR/><BR/>I am a 3rd grade teacher. I started a sign language club after school. I was hoping to get at least 25 kids who were interested in learning and I ended up getting 133 who wanted to learn! <BR/><BR/>I know other parents who have brought in Signing Time! to their schools and had their classmates, and teachers, learn it right along with them. I know that you will always have fears, but knowledge will help you overcome them better!!<BR/><BR/>My tripet boys were born at 27 weeks and I knew I would be facing some issues. I started signing with them when they were one (wish I had started earlier) and they are doing great now. There are times that I would not have understood their speech if it weren't for their signs to go along with it. It's pretty obvious I love Signing Time!, but it's totally changed our lives for the better. I hope your fears are ended soon.Cathyhttps://www.blogger.com/profile/18056899924799603636noreply@blogger.com