Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dale, Best wishes to you and . I hope your college hunt will be successful. You may surprise yourself and be able to take focus off Katy. It's very healthy to have seperation, eventhough it seems so difficult. And remember it will give Katy and her dad a chance to depend on each other. I know that I tend to be a control freak and it really doesn't give Tom the chance to experience some things. It's difficult for me to " let go " and he's so passive and trusts me. I'm getting ready to take a vacation with out them. To give myself some time and them some time alone. I have mixed feelings about it, but I feel I need to do it for myself. Having Zachary 24-7 and w/Tom traveling quite a bit lately, Zach and I are joined at the hip. Don't get me wrong, I love him and really enjoy it. But I just need to give myself a break, and him too. I have come to really enjoy homeschooling. At first I hated the thought. I'm a person that likes to make my own decisions, and the homeschool issue was not a choice at first, but necessary for Zach's health. But I love having him around me all the time. It has really eliminated alot of stress on our family. He is sooooo much healthier now. And I believe that he's learning much more than he would in school. I worry a bit about his independance too. I am his comfort zone. But he's still young. Well have a great trip, and let us know how things go. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Dear Autumn: I am sorry to hear about the boys. I am very interested in the cd-5 marker. We have not heard what happened to our immunologist contacting rainbow babies hospital in cleveland. I wish there was more I could do for you in the way of support. Is there anyother teatment for kyle's asthma to keep him more open? I am glad the graduation ceremony went OK. It seems that at that stage they are entering the real school world and you kind of loose the homestage forever. I will keep the boys in our prayers and hope that the rest of the tests come out better. always in our thoughts, annette mom to alissa cvid asthmatic >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >CC: scidmail@... >Subject: Re: Hi from Dale >Date: Mon, 14 Jun 1999 17:34:14 EDT > >From: Autti@... > > > > >Thank you for asking about the boys. I am quite behind in my email. I now >that Urs asked how they were too. It is a very busy time of year. Today >we >had Kindergarten graduation and I spent the morning preparing food and the >afternoon sobbing with 25 other mothers as we watched our little ones get >their kindergarten diplomas. > > is doing better then he was, but is for the most part steroid >dependent >and VERY, VERY cushingnoid. It is kind of sad to see like this but at >least he is breathing. He remains on 30mg of Prelone daily. Even at that >dose, his Pulmonary Function Test was very " scalloped " and his lungs still >are functioning in the 57% zone. He peak flow remains in the yellow >(caution >zone) and usually is in the red zone in the morning. As 's physician >explains it, he said that it indicates that is having chronic, >persistent/daily asthma verses acute attacks and that one of two things is >going on with ...either he is becoming steroid resistent or he is >getting >worse. This Thursday will go in for another Sinus surgery and an EGD. >It is suspected that has gotten worse with his GERD as well. > >Mark is a totally different story and I was going to wait on one more set >of >lab results before I wrote this to the group, but I may as well tell you >all >now. It looks pretty certain that Mark has Lupus or some form of >connective >tissue disease. All the doctors strongly suspect Lupus as this time. He >was >started on an anticoagulent two weeks ago and has one more set of labs to >be >drawn this Wed. and two biopsies need to be done. We will know for certain >by the end of the month. Dr. H said that if Mark is 100% confirmed then he >will have the other Cd5 boys checked as they have some of the findings as >well. SO far, one fo the labs was positive/suggestive. > >I will let eveyone know as I find out. This is not news we wanted to hear >but we are not totally surprised. One of the markers for Lupus is an >elevated Cd5+ cell and we all know that Mark has 100% of those. We will >just >has to wait and see what happens and deal with it when we know for sure. >Mark is presently deficient in Complement 4. > >I have been keeping a low profile and just " lurking " a bit. The >dermatologist that saw Mark told us right off the bat that Mark had Livado >skin changes very consistent with Lupus. He told us that Mark could not go >out into the sun or he could die. Mark's skin is very bad right now. I >asked why he told us that and he explained that in some Lupus patients that >have livado skin patterns can have photo-sensitivity and that the sun does >something to their blood and can make the disease/flare up worse or even >cause death. Mark was VERY upset about this and told my husband and I that >he is tired of being a " piece of food for everyone to take a sample >of " .....he was crying when he said this. I don't blame him. If the lupus >is >confirmed it will devastate us....it will take so much away from Mark not >being able to go in the sun anymore...it is almost as if he loses a little >bit of being a child each time we learn something..and my heart gets a >little >bit more heavier. > >Well, I better stop for now...need to get off to T-ball. Thanks for >letting me vent. > >Autumn mom to Mark Cd5-Cd19 PID/ GERD, Samter's, A1A > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Thank you for asking about the boys. I am quite behind in my email. I now that Urs asked how they were too. It is a very busy time of year. Today we had Kindergarten graduation and I spent the morning preparing food and the afternoon sobbing with 25 other mothers as we watched our little ones get their kindergarten diplomas. is doing better then he was, but is for the most part steroid dependent and VERY, VERY cushingnoid. It is kind of sad to see like this but at least he is breathing. He remains on 30mg of Prelone daily. Even at that dose, his Pulmonary Function Test was very " scalloped " and his lungs still are functioning in the 57% zone. He peak flow remains in the yellow (caution zone) and usually is in the red zone in the morning. As 's physician explains it, he said that it indicates that is having chronic, persistent/daily asthma verses acute attacks and that one of two things is going on with ...either he is becoming steroid resistent or he is getting worse. This Thursday will go in for another Sinus surgery and an EGD. It is suspected that has gotten worse with his GERD as well. Mark is a totally different story and I was going to wait on one more set of lab results before I wrote this to the group, but I may as well tell you all now. It looks pretty certain that Mark has Lupus or some form of connective tissue disease. All the doctors strongly suspect Lupus as this time. He was started on an anticoagulent two weeks ago and has one more set of labs to be drawn this Wed. and two biopsies need to be done. We will know for certain by the end of the month. Dr. H said that if Mark is 100% confirmed then he will have the other Cd5 boys checked as they have some of the findings as well. SO far, one fo the labs was positive/suggestive. I will let eveyone know as I find out. This is not news we wanted to hear but we are not totally surprised. One of the markers for Lupus is an elevated Cd5+ cell and we all know that Mark has 100% of those. We will just has to wait and see what happens and deal with it when we know for sure. Mark is presently deficient in Complement 4. I have been keeping a low profile and just " lurking " a bit. The dermatologist that saw Mark told us right off the bat that Mark had Livado skin changes very consistent with Lupus. He told us that Mark could not go out into the sun or he could die. Mark's skin is very bad right now. I asked why he told us that and he explained that in some Lupus patients that have livado skin patterns can have photo-sensitivity and that the sun does something to their blood and can make the disease/flare up worse or even cause death. Mark was VERY upset about this and told my husband and I that he is tired of being a " piece of food for everyone to take a sample of " .....he was crying when he said this. I don't blame him. If the lupus is confirmed it will devastate us....it will take so much away from Mark not being able to go in the sun anymore...it is almost as if he loses a little bit of being a child each time we learn something..and my heart gets a little bit more heavier. Well, I better stop for now...need to get off to T-ball. Thanks for letting me vent. Autumn mom to Mark Cd5-Cd19 PID/ GERD, Samter's, A1A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Dear Autumn: Thank you for the correction I will let my immunologist know in the morning take care of yourself. I think that mom's of our kind of children are very special people. And noone else outside our group will ever,ever understand. God Bless and keep you in the palm of his hand. annette mom to alissa my blessing of cvid and asthma ect. >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Hi from Dale >Date: Mon, 14 Jun 1999 21:32:35 EDT > >From: Autti@... > >Dear Annette, > >Thank you for your kind words. In regard to the Cd5+ marker..make sure >your >immunologist knows that it is CD5+ and not Cd5...there is a difference. >Let >me know if I can help more. > >Autumn > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of 170,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Dear Autumn: Thank you for the correction I will let my immunologist know in the morning take care of yourself. I think that mom's of our kind of children are very special people. And noone else outside our group will ever,ever understand. God Bless and keep you in the palm of his hand. annette mom to alissa my blessing of cvid and asthma ect. >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Hi from Dale >Date: Mon, 14 Jun 1999 21:32:35 EDT > >From: Autti@... > >Dear Annette, > >Thank you for your kind words. In regard to the Cd5+ marker..make sure >your >immunologist knows that it is CD5+ and not Cd5...there is a difference. >Let >me know if I can help more. > >Autumn > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of 170,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Dear Annette, Thank you for your kind words. In regard to the Cd5+ marker..make sure your immunologist knows that it is CD5+ and not Cd5...there is a difference. Let me know if I can help more. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Dear Annette, Thank you for your kind words. In regard to the Cd5+ marker..make sure your immunologist knows that it is CD5+ and not Cd5...there is a difference. Let me know if I can help more. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Thanks Dale will do so. Thanks for the correct words and I will go take my five minutes out. Sorry for the backslide. My faith is not working where it should be. take care annette mom to alissa cvid,asthmatic >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Mon, 21 Jun 1999 12:54:01 EDT > >From: DaleMWeath@... > >from Dale, Mom to Katy, CVID, age 15 > >I'm hearing a lot of depression out there. Take five minutes to lock >yourself in the bathroom and name 10 things to be thankful for! Okay, it >may take more than 5 minutes -- but go work on it! > >That's what we're here for: to support each other when the road is rough >so >that the burden is lighter and to share the joy so that it is multiplied. >We each carry very heavy burdens around every day. Our coping is right on >the edge and when you add Father's Day, financial pressures, marriage >difficulties, obstinate doctors , it often sends us over the edge. And >yes, >sometimes we crack up more when the stress is off than when we're in >emergency mode. This is the role you are in. Wishful thinking won't get >you out of it or change it. There will be better days -- and there will be >worse ones -- the trick is to focus on today and approach each day fresh >and >new. When Jesus taught His disciples to pray for " daily bread " that's >exactly what He meant. Each day a fresh supply -- no leftovers. He has >made you the parent of a very special child (or more) that will bring you >much, much joy, and much, much sorrow. You are parenting in unchartered >waters, but God knows every detail. You are not alone, nor do you have to >know all the answers. He will supply your every need. God bless you as >you journey with Him today. Ask Him to give you joy in the journey. > >In His service, >Dale > >------------------------------------------------------------------------ >How many communities do you think join ONElist each week? >http://www.onelist.com >More than 5,000! Create yours now! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 from Dale, Mom to Katy, CVID, age 15 I'm hearing a lot of depression out there. Take five minutes to lock yourself in the bathroom and name 10 things to be thankful for! Okay, it may take more than 5 minutes -- but go work on it! That's what we're here for: to support each other when the road is rough so that the burden is lighter and to share the joy so that it is multiplied. We each carry very heavy burdens around every day. Our coping is right on the edge and when you add Father's Day, financial pressures, marriage difficulties, obstinate doctors , it often sends us over the edge. And yes, sometimes we crack up more when the stress is off than when we're in emergency mode. This is the role you are in. Wishful thinking won't get you out of it or change it. There will be better days -- and there will be worse ones -- the trick is to focus on today and approach each day fresh and new. When Jesus taught His disciples to pray for " daily bread " that's exactly what He meant. Each day a fresh supply -- no leftovers. He has made you the parent of a very special child (or more) that will bring you much, much joy, and much, much sorrow. You are parenting in unchartered waters, but God knows every detail. You are not alone, nor do you have to know all the answers. He will supply your every need. God bless you as you journey with Him today. Ask Him to give you joy in the journey. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Amen Dale! God has emotions too! Well, we made it through are little vacation with just our bag full of meds. Thank you God! Lori Mom to Austin-Di Syndrome.................................. Hi from Dale >From: DaleMWeath@... > >from Dale, Mom to Katy, CVID age 15 > >Dear Annette, > >I do not consider it to be backsliding or a lack of faith to be discouraged. >THIS IS A TOUGH ASSIGNMENT. There are days when I can hardly put one foot >in front of the other -- but I know that if I'll focus on Him -- He'll carry >me through. > >Katy was a really strong-willed child. I used to offer to carry her or help >her when she was tired or having difficulty. She would stick out the little >chin and say, no, thank you, I'll do it myself. - only not that politely. >I've learned that I, too, am a strong-willed child. So many times when I >find myself stumbling because of fatigue or depression or fear or because I'm >so weighted down with the load, I realize that I'm being just as stubborn. >All I have to do is lift my arms and say, " help! " and He'll pick me up and >carry me in His strong arms. > >Don't let anyone tell you that you should always be " up " because of your >faith -- it doesn't work like that! Your faith is what reminds you to look >up when you find your face mud covered! And it gives you the courage to put >your hand in His and really truly trust that He does know what's going on. >Your faith will not protect you from the pain and hurt and fatigue and >discouragement -- but it will show you where to take it and what to do about >it. We have a loving Heavenly Father who gladly bears our burdens. He >doesn't criticize us for admitting that they are heavy! > >Wishing you joy today in the knowledge of His presence, >In His service, >Dale > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > ________________________________________________________ NetZero - We believe in a FREE Internet. Shouldn't you? Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Autumn, I am so sorry to hear about the boys. I cannot imagine having two sick children. You must be on pins and needles waiting for Mark's results. Not to mention anything about 's impending surgery. We'll keep you and the boys in our prayers, that you may be strong through these difficult times. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.