Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 << The hypertonia is very much improved now that he is getting his PROM on a regular basis. >> Carol, Thanks for writing. What is PROM? I haven't heard this term before. Joanne, mom to , 1 year, New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 I want to thank everyone for the warm welcome. I have 42 emails to read through. I'm sorry I didn't respond to much during the week. I work 15 hour shifts and just collapse when I come home. I don't get very much sleep and hardly any time to do the things I want to do, like read all that email. The baby I care for is a 7 month old boy named Mark. For obvious reasons, I can't give more information than that. I am copying emails and taking the information to Marks parents. They are very excited to learn of the support network you have set up. The only problem is they don't have a computer with a modem. They are working on it, so maybe they will be online soon. I know you could help them a great deal. They so badly need to hear some of the positives about your children. Mark was not expected to live a week. He was left lying in the hospital and they parents said they felt like the medical staff was just waiting for him to die. See, I can do a little nurse bashing myself! You really don't have to worry about that with me. There are good and bad in every profession. Mark does not have a specific diagnosis other than PMG in general. We don't know the extent of the damage, and I really don't think his doctor does either. They said if he lives, he would be blind, never have teeth, walk, crawl, interact, etc The first week Mark was home from the hospital was a tough one. He had not been held or handled at all in the hospital. He had severe hypertonia of the lower extremities and his hands were already contractured into tight little fists. The poor baby was not use to the human touch and was very agitated when held. I took care of that as quickly as possible. After a few 15 hour shifts of holding, rocking, singing, etc, Mark began to relax and within the week, was relaxed and seemed to be use to being held. Now at 7 months, he loves it being cuddled and rocked. He doesn't even mind my bad singing! Mark does not have a hx of seizure activity, but...................he had 2 seizures about a month ago. One was on my shift and it was an irretractible seizure. The parents like to think it was tremors from the albuterol, but I was not able to stop it. It lasted about 45 seconds. It also happened to the other nurse on the case. An EEG was done and the parents were told it was unclusive because his EEG read abnormal, but that was to be expected with pmg. If it were tremors, we would have been able to stop it by holdling him. I just hope there is no more. His fontanel was bulging at the beginning of the week, but is back to normal now. Back to the things the doc said would never happen.......Mark has 3 teeth and is cutting his 4th. The doc said he should be blind but I found him to just shut down with too much stimuli. If I do his visual therapy through the night, he always responds and is now responding at times during the day. I turn out all the lights in the room, put him in a vibrating infant seat (iittle help with the neb/cpt) and turn on the cartoon channel with no sound. With all other stimuli removed, Mark will look at the tv for about 20 minutes at a time. He turns his head toward the lights. He definitely can see, he just can't handle a lot of stimuli at once. Today I held him facing me and he was trying to smile. We are just starting to see a little interaction once in a while. He was looking right at my face and I'm sure he was trying to smile. He just can't lift up those chubby little cheeks yet. We are working on head control at this point, and Mark will work very nicely with us. He is making subtle progress I mentioned that his hands were contractured when he came home from the hospital at 4 months, 3 days old. His hands are now loose and relaxed. The hypertonia is very much improved now that he is getting his PROM on a regular basis. Mark also has bilateral hip dislocation, scoliosis, tachycardia, bradycardia at times, a rt inguinal hernia. He is on a respirator and continuous pulse oximetry. I'm probably rambling here, I am exhausted but get to stay home tonight so I didn't sleep at all today. The parents were advised to visit Dr. Dobyns in Chicago so they were excited when I took the information that one of you sent me about Dr. Dobyns and the research he is doing. I can't begin to tell you how much you have all helped this mother already. Just with the few emails I printed and took her, she is very happy. Being a rare disorder, she didn't think anybody could really understand what they are going through. She is anxious to read about your experiences with your kids and hopes to learn more about her own child. Mark is a beautiful little boy. I wish I could put a picture of him up, but that would be a big confidentiality issue. I know once the mom is online, she will be happy to share Marks picture with you. I really must get some sleep, but will try to go through all the email before I do so. Thanks again to everyone for letting me in the group as Marks nurse. I know this is where all the REAL information is at. I hope to hear more from all of you. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Carol, We have a family web page. Kennedy's picture and story are on it. http://www.geocities.com/kenjenjennings/ ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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