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From Sandra
Here is the link to the news article by Lois Collins of the Deseret News in Utah.
http://deseretnews.com/dn/view/0,1249,635194265,00.html Thanks to all of you who gave Lois interviews. To those she didn't have time to contact, thanks for being willing!
There will be other times we will get articles written, I am sure! Good luck to all of you!
From Sheila
slmeyer@telus.net I tried to write to a girl on the message board, who was not having luck breast feeding, but it did not go through. Not sure of her name, but I had class 1 HELLP and both baby and I were not expected to survive, thank God we did... but I too was told after such a trauma the chances of breast feeding were slim to none. Once out of ICU and NICU, I went to my regular GP (who is also a lactating specialist) and she put me on a medication for ulcers. Sounds strange, but doctors no longer use this drug for ulcers because it made women lactate who had not just delivered a baby. I was on it for only a week and was able to nurse my little girl around the clock until she was a year and a half old. Not sure of the name of this medication, but I could check with my doctor to find out.
From Lisa
lisaking@sc.rr.com Our first child, James was born at 26 weeks, 1 pound 14 ounces due to a very sudden case of severe HELLP syndrome. Two days before his birth I had my six month exam, and was completely normal. I suddenly started to have severe chest pains one evening (later finding out it was my liver enlarging) that went away after about an hour. The next day I went to the doctor when the pain started again. Things spiraled out of control and I had my son delivered by emergency c section a few hours later. I was extremely ill and required 2 blood transfusions after my platelets dropped below 15,000 and my blood pressure sky rocketed to 210/200. We were told, while still in the hospital never to try for any more children. That HELLP would come on worse next time. Well, we sought the advice of a high risk OB, who tested us for everything under the sun. I was found to have hyperparathyroidism which was later cured by surgery. The doctor could not say whether the two problems were related. Three years later he placed me on a baby aspirin therapy 3 months before and during my subsequent pregnancy. My daughter is now 2.5 yrs old and was born at 36 weeks with my having absolutely no symptoms or signs of HELLP. She was born early to not risk having a uterine rupture due to my classical incision from our emergency c section the first time around. Our son, will forever be effected from this horrible Syndrome. After almost losing his life in the struggles in the NICU from his prematurity, he has a seizure history, is nonverbal and has global delays. We are so fortunate that he is here with us, that both of our children are. There are so many families that have lost their children, and we give thanks daily for our blessings. We are just very pleased that we went on to speak with a high risk OB after the birth of our son. And even being told there is no guarantee, when we took care of the hyperparathyroidism, it felt like we could have a chance for a normal pregnancy with our second and thankfully we did. The whole purpose of this post is to reach out to others and let you know my story and give you specific information if you need it to help your family. Please email me at lisaking@sc.rr.com if you need any support!"
From Trish
tmcdermottpr@aol.com Our son was recently diagnosed with Tourettes syndrome. One doctor we've seen thinks our son's case may fall into a rare group of Tourettes kids where the Tourettes is the result of some type of auto-immune issue. I'm just wondering if any other parents have children with any of the neurological disorders among the spectrum (like ADHD, OCD, Tourettes, NVLD, Sensory Processing disorders, etc.). If so, can you write to me at: tmcdermottpr@aol.com.
From Dawn
Greetings all. It's been awhile since the last Walker Report, so I'm sure you are wondering what we've been up to since Walker's hospital stay last month. Since then, he has been in good health. No setbacks primarily because we have been kept away from people in general. We've had much going on, and all of it good. Walker saw his Pulmonologist this past week and had a X-ray done of his chest. His lungs have healed amazingly well from having pneumonia. (Thanks for all the prayers!). Also, since he has recovered so nicely, Walker will be officially out of isolation starting in May. He will be allowed to have play dates, play on the playground with other kids, go to festivals and concerts, go to the mall........ We just need to continue with copious hand cleansing and not be around anyone who may be sick. And.... he should be able to start school part-time when he is 3 !!!! Yippy! He also saw his ENT doctor this past week, who said his ears look great and will not be needing another set of tubes in his ears. This also means that Walker will no longer need to have follow-up visits either. So.... we can scratch one doctor off this list !!! Another Yippy ! Developmentally, Walker is already being treated by a Developmental Therapist weekly. He will soon be seeing OT (for fine motor skills & sensory issues), and soon to be evaluated by the Feeding Clinic and Speech Therapy (for his oral issues and for his language). All of this will help him to be caught up to his age by the time he starts school. It will also help him to be able to control his HOT temper. As a side note, Walker will not be seeing PT because his gross motor skills are off the charts.... I said it was because he had to fight off all the staff while being in the NICU for so long. By now you should have seen his feature article in Preemie Magazine. We hope you enjoyed it! Preemie Magazine just announced that they have partnered with March of Dimes. This is big news for Preemie Magazine. You can still see this issue of the magazine at their website, www.preemiemagazine.com. It also has some pictures of Walker. As if this wasn't enough....we seem to be on a fast track to making this kid famous. All Children's Telethon will be featuring Walker in one of the stories. Our story will be 1 of 14. This will be televised locally on June 3 & 4. I hope to have a raw copy on DVD from the interview. In between Walker's many events and me working, we have started traveling again. We have already been to the Keys to visit my mom, tomorrow we will be going to visit my Dad & his family, and this summer we have more trips planned. For the family in Pensacola, we plan to be in Pensacola at the end of July.... hope to see you then. Also, Walker will now be able to meet Mickey and go to Busch Gardens this summer. Big plans.... such little time. Another few years and he will be scuba diving. Thanks for taking the time to read the update. We thank you all so much for your love & support. Congrats for all the new babies and babies to come, and for all the birthdays we have missed. Next year we can start going to the parties!
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