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in staying focused, recalling what she has already learned, and getting frustrated when she can't seem to understand. Until she started school, the only thing we noticed was that she would give up too easily on something that required much effort or thought.
As a grandmother, I am wondering if there is any history of children born under the duress of HELLP having any learning disability problems similar to these? If so, are there any suggestions as to how to help her learn?
From Karen
karenbainbridge@teesdalemercury.co.uk I had HELLP Syndrome 8 years ago when my daughter was born. I suffered major organ failure and pneumonia. I would like to know if you know of any of your members who have developed problems later in life with kidneys, blood clots, etc. Thank you
From Donna
dmmetler@bellsouth.net. It's official-Alli's fallen off the normal end of the spectrum for motor skills development, even accounting for prematurity. I've suspected that for awhile-she's about at the 28-29 week level according to the "baby week by week" books, and she should be somewhere between 35-40 weeks. Right now, we're supposed to work with her at home, and wait and see what she's doing in 6 weeks, and if she's not catching up, refer for a PT assessment then. Supposedly, the problem could be that she's working on other skills (she does seem to be ahead on language to some degree-she uses "Dada" for "whatever parent isn't here right now" and "Ca!" for the cats or anything soft and furry, plus has a few gestures (not exactly ASL signs-I think she's making up her own as she goes along) that she uses regularly.). We started Mothers day out last week, allegedly so I could teach my kindermusik classes, but until more kids sign up for fall, I can't start teaching (the day care decided to wait on sending out flyers and information to parents, with the result that my preschoolers all went to Kindergarten, and I had no one left), and she's doing great-not crying much, eating well, and seems to like playing, but in watching the other babies, she definitely seems more like a 6 month old than an 8-9 month old. I've also had several people express surprise that she's as old as she is. And it's not that she's tiny-she's 27 3/4 in, which means that she's over the 50% for a 9 month old (although skinny-she's 16 lbs, so at about the 10% on weight).
I'm trying not to be too depressed-and I did expect it, but this combination of physical delay plus advanced language skills is looking all too familiar. I don't want her to deal with being twice exceptional and having a physical body that can't keep up with what she wants to do. And I'm afraid that's where we're going.
Donna - Mother to Angel Brian Anthony 1/1/2002, 22 weeks, severe PE/HELLP
And Allison Joy, 11/25/04 (35 weeks, PIH, Pre-term labor)
From Dawn and Walker
webbdm@gmail.com First off, I would like to let you all in on a big secret. It's just too exciting to keep quiet. Walker will be featured in, not just one, but TWO magazines. Walker has also been featured twice in our church newsletter, (once for his baptism and once was a bio of the both of us).
1. He has been selected to be on the cover of Preemie Magazine, and there will be an entire article about him. He is their "VIP" (Very Important Preemie) for the Winter 2006 edition. You can log on to
http://www.preemiemagazine.com/subscribe/ to request your free copy of this
subscription. I should be getting a phone call soon for the interview. Walker had his very first photo shoot this morning. Out of the 200 pictures taken, they will narrow it down to just a couple, and they will be choosing one of his newborn pictures as well. I will keep you informed as time nears for the release of this issue.
2. The other magazine is a local magazine, ParentGuide.
http://www.parentguide.com/ Walker will be featured in the Holiday Issue that will be coming out this holiday season. I will be interviewed this coming Friday. I don't know if Walker will need to do a photo shoot because, as you all should know by now, I have thousands of photos to choose from. This too, I will keep you posted on.
Walker was evaluated recently by the local developmental group, Early Steps. He failed a few areas, passed a few, and did much better than expected in other areas. But because he failed, especially in his verbal language and receptive language areas, he has been accepted into their grant program and will be working with different therapists to get him up to par. I think they will quickly realize that most of him is hard-headedness. As some of you already know, Walker had to spend a night in the hospital a couple of weeks ago for breathing issues. He had a simple cold which caused his bronchials to flare and become swollen. This means, he still has a weak immune system and the asthma is getting worse. But we did get good news from the X-ray that was done on his lungs. His lungs look normal now. All of the horrible scar tissue is almost gone, but his bronchials are much smaller than most kids his age. So, he will always need to be very careful about what he breathes in and he will need to stay on medications for much longer than expected. All other health issues seem to have subsided. Eyes are great. No more nephrocalcinosis or metabolic bone disease. He will be evaluated again later this month for the fractures he had from the metabolic bone disease, but all should be fine. No more bowel problems. Not throwing up his food as often as he was. He is eating more finger-foods, but still on 3rd Stage Gerber for the most part. Favorite activities: Dancing, playing in water, singing, and playing with cars.
Favorite stuffed animal: Sweet Duck. (He's loved this duck for a long time now)
After Hurricane Katrina, The HELLP Syndrome Society, Inc. contacted members along the Gulf Coast to see how they were. Here are a couple of responses. We realize that some were without power or Internet access so our thoughts and prayers go out to all affected.
From Evelyn
Emmsacks@aol.com Thank you for your prayers. My parents' home in Biloxi was destroyed (I was living with my parents while my husband is deployed). Our home in Meridian is fine-just trees down and power is being returned. The coast and families are devastated. Please keep them in your prayers. We adopted a precious baby girl and are so happy. Keep up the good work with HELLP.
From Laura
CAmann7037@aol.com Thank you for your kind email. We are safe and for that have to feel fortunate, but can't help being heartbroken that our lives as we knew it in New Orleans are forever changed. We will make it thru as one always does, but wow is this one an unexpected turn of events. Thanks again for reaching out.
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