Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Ursula: Sorry to hear about your TMJ but welcome to the elite club of mouth splints!!!!!!!!!!!!! HOpe Macey is feeling better!I have one too. annette and alissa > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: weekend >Date: Fri, 8 Oct 1999 22:18:59 -0400 > >Well this weekend Les goes over to graveyard (11pm to 9 am) so that I can >take a second session Psychology class (had to drop the first one, really >weird instructor). So he'll sleep most of the day while the girls are at >school and be up in time for dinner. It'll be a nice change of pace. > > - meant to mention earlier that I hope the increase in product helps. >How much did he weigh at the visit? about the cycles of low ANC's, Macey >went through something similar last year. Her ANC started to drop in >December and didn't rebound until July of this year. The last ANC 2925 and >the one before that was 4000. I'm wishing there was more of a consistency >with the numbers but then again they're about as bouncy as anything else >going on in her. We just always watch to keep away from that 750 number. >Macey is tested for HIV and Hepatitis B & C every year. This year her Hep B >levels came back with antibodies but no antigens. Then they reran them a >special way to see if it was an infusion antibody or if she had been >exposed >or had Hep B. It was ruled an infusion antibody (passive). The Hep C was >negative and of course the HIV was (or else you'd have a basket case on >your >hands by now). The first year it was done in March the second year in May, >so next year it will be in April (much easier to keep up with anyway, we'll >just do it each birthday). Regarding the poop, we've used glad freezer >ziplocks before. Seems to do alittle better and less chance of odor leak. >Good luck hope the stool tests come out negative. > >Annette - hurray for Alissa, moms little hero > >Dale - hope Katy's doing better. Good luck with the new show and I hope >her >next infusion helps with things. Have there been any signs of winter in CA >yet? > >Autumn - I'm still thinking about you hun. How is Mark doing? how is Big >Mark doing with all of this? Let me know if there is anything I can do. > >Wednesday night I thought my ear was going to fall off, so Thursday morning >after doing my PTO duty and helping with the 3rd and 4th grade vision >screening at the girls school, I headed for the doc in the box. Major ear >pain, throbbing and a hard knot in the side of neck. So the doc looks me >over, looks in my ear and checks me out. Then proceeds to draw some blood. >Turns out I have TMJ (and a nice little mouth plate now to show for it), a >viral illness (with a nicely reduced WBC and for some strange reason low >platelets, oh yeah and my own Flumadine script) and a growth on my neck >(for >which I have a dermatology consult next Friday). > >So much for self diagnosis..... ear infection my foot. Booo Hooo Hooo, woe >is me. > >Ursula - & Macey (4 yr old w/CVID) mom > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Hi Ursula, I have a question...How do you get " pumpkin " status for your child? Do I send you a photo & biographic info ? Wade & I went " pumpkin viewing " this weekend & now he wants me to get " pumpkin " status for him! Also, I noticed that you keep referring to Macy's ANC count....what does ANC stand for ? It's probably a really stupid question with an all too obvious answer but I can't seem to get my feeble brain cells to remember what it means! Thanks! Hope you are feeling better too! Hope everyone had a great weekend! Beth, mom to Wade, 12 with CVID, Asthma, GERD, Chronic Sinusitis,IVIG,etc.... At 10:18 PM 10/8/99 -0400, you wrote: > > >Well this weekend Les goes over to graveyard (11pm to 9 am) so that I can >take a second session Psychology class (had to drop the first one, really >weird instructor). So he'll sleep most of the day while the girls are at >school and be up in time for dinner. It'll be a nice change of pace. > > - meant to mention earlier that I hope the increase in product helps. >How much did he weigh at the visit? about the cycles of low ANC's, Macey >went through something similar last year. Her ANC started to drop in >December and didn't rebound until July of this year. The last ANC 2925 and >the one before that was 4000. I'm wishing there was more of a consistency >with the numbers but then again they're about as bouncy as anything else >going on in her. We just always watch to keep away from that 750 number. >Macey is tested for HIV and Hepatitis B & C every year. This year her Hep B >levels came back with antibodies but no antigens. Then they reran them a >special way to see if it was an infusion antibody or if she had been exposed >or had Hep B. It was ruled an infusion antibody (passive). The Hep C was >negative and of course the HIV was (or else you'd have a basket case on your >hands by now). The first year it was done in March the second year in May, >so next year it will be in April (much easier to keep up with anyway, we'll >just do it each birthday). Regarding the poop, we've used glad freezer >ziplocks before. Seems to do alittle better and less chance of odor leak. >Good luck hope the stool tests come out negative. > >Annette - hurray for Alissa, moms little hero > >Dale - hope Katy's doing better. Good luck with the new show and I hope her >next infusion helps with things. Have there been any signs of winter in CA >yet? > >Autumn - I'm still thinking about you hun. How is Mark doing? how is Big >Mark doing with all of this? Let me know if there is anything I can do. > >Wednesday night I thought my ear was going to fall off, so Thursday morning >after doing my PTO duty and helping with the 3rd and 4th grade vision >screening at the girls school, I headed for the doc in the box. Major ear >pain, throbbing and a hard knot in the side of neck. So the doc looks me >over, looks in my ear and checks me out. Then proceeds to draw some blood. >Turns out I have TMJ (and a nice little mouth plate now to show for it), a >viral illness (with a nicely reduced WBC and for some strange reason low >platelets, oh yeah and my own Flumadine script) and a growth on my neck (for >which I have a dermatology consult next Friday). > >So much for self diagnosis..... ear infection my foot. Booo Hooo Hooo, woe >is me. > >Ursula - & Macey (4 yr old w/CVID) mom > >>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. > > Beth Rathburn Vice President International Biological, Inc. P.O.Box 66278 Roseville, Michigan 48066 (313)571-4677 (313)571-5788 fax beth@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Dear Ursula: Hope Macey is doing better and you are able to get in to see the neuro. I hope her fever goes away and does not develop into anything. I am very tired worked all yesterday and had to go back for a meeting at work. Alissa is doing allright physically and hope tomorrow we hear what the lab results are. if they find them. Have a questions for all the wives out there? How many husbands help with everything, housework, cooking chores around the house? and also medical appointments? take care and give Macey a big hug, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: Weekend >Date: Sat, 13 Nov 1999 20:50:31 -0500 > >Macey is doing ok. She has a small cough which comes and goes and she >starts coughing when she tries to do her peak flows. Small fever this >morning but probably from the coughing. She had another fall today. >Scraped her hands up but she finally threw her arms out in front of her to >catch herself so there was no hit to the head this time. The ped made the >neuro referral Friday but they called one not on our insurance so it will >have to be redone on Monday. Good thing too because this doc couldn't get >her in till January 19. Plus the one they should have called is at the >same >hospital where her brain MRI is on file so that will help. Everything is >going well. Motility is still good and her sinuses are staying clear. >Seems her chest is the thing right now but nothing her mom or grandmom >haven't also had trouble with lately. We're still giving more albuterol >treatments than I'm comfortable with right now, especially with the Flovent >also on board. > >So that's the mini-update on Macey, now on to look through the rest of the >mail. > >Ursula - & Macey (4 yr old w/CVID) mom > > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Annette - I do hope they're able to find those labs. Hate to have to poke Alissa all over again. Macey's cough is worse and the albuterol is not helping or if it is it's only for an hour or two. Spoke to on call doc this morning because I was trying to distinguish between a cough in the throat and one that's in the chest. Even though it sounds a lot like a bark I still couldn't tell. And since the albuterol wasn't working I was thinking this was all a throat thing. We talked for a while, went over options and decided to give her one loading dose of Prelone to get her by till morning with another dose tonight if needed. Our regular ped will see her tomorrow and do a chest xray and cbc. I've just finished giving her another treatment and she has another low grade fever but her cough sound more productive now and she can feel the " stuff " coming up into her throat when she coughs. Now if she would just spit it out. I just want to get her through till tomorrow. Regarding hubby's. I must say I have really lucked out when it comes to mine. Les works 8 am to 8 p.m., 7 days a week right now. He is civil service and they are on mandatory overtime. On Monday and Wednesday he goes straight from work to get Macey at school at 9 am and stays with her till noon at therapy. Then takes her back to school and goes home to get some sleep. After school I usually go visit my mom or my MIL so that Les can finish his sleep and then we all eat dinner together right before he heads off to work (7:15 p.m.). Thankfully next semester my classes are on Tues and Thurs so I can start doing the therapy visits. Plus after thanksgiving he will be going to 4 p.m. to 4 am shifts. Those should be interesting. Depending on the medical appointment he will go with me. If it's a checkup then he doesn't but if there is new info being discussed or if the doc has asked that we both come then we'll also bring his mom along so that we can talk to the doc and she watches Macey. Les cleans the kitchen for me because I have a very weak stomach but I mop and clean the counters. That's pretty much all I've asked him to do, I just can't handle doing those dishes. He is a very good cook but on his work schedule right now can't do much of it. He also is good with the laundry. Les and I have a long history. We've been married then divorced then remarried so we've had a chance to work out most of the kinks and decide that we wanted to be together. He's such a cutie. Ursula - & Macey (4 yr old w/CVID) mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Ursula: Just a thought regarding the cough--see if you can give Macey some Dylsem. Our ped. recommends it for the boys--and --when the cough goes from one sound to the next--such as from a tickle in the throat to a croupy sound to an asthmatic cough. We give it in tandem with the nebulizer treatments and it really does work. This is one way we have been able to dodge the prednisone bullet! We also have a trick that 's respitory therapist taught him years ago--when he was 2. When he starts to cough or look bad we ask him how his lungs--or breath--feels. He then holds up his hand in a signal that tells us--open all the way means fine and closed into a fist means he's in trouble. Both the boys use this and we have taught their teachers and office staff at school the signs and if they start to feel an episode coming on we can treat it accordingly. Most of the time we get a half-closed hand and the peak flow shows yekkow, so for us it works well. BTW, coughs almost all the time when he does his peak-flows. his doctors have had us lay off them for a while until we can get the sinuses, cold and asthma symptoms cleared so we are relying on just the hand signals for now. - mom to jacob-dysgammaglobulinemia RE: Weekend > > > Annette - I do hope they're able to find those labs. Hate to have to poke > Alissa all over again. Macey's cough is worse and the albuterol is not > helping or if it is it's only for an hour or two. Spoke to on call doc this > morning because I was trying to distinguish between a cough in the throat > and one that's in the chest. Even though it sounds a lot like a bark I > still couldn't tell. And since the albuterol wasn't working I was thinking > this was all a throat thing. We talked for a while, went over options and > decided to give her one loading dose of Prelone to get her by till morning > with another dose tonight if needed. Our regular ped will see her tomorrow > and do a chest xray and cbc. I've just finished giving her another > treatment and she has another low grade fever but her cough sound more > productive now and she can feel the " stuff " coming up into her throat when > she coughs. Now if she would just spit it out. I just want to get her > through till tomorrow. > > Regarding hubby's. I must say I have really lucked out when it comes to > mine. Les works 8 am to 8 p.m., 7 days a week right now. He is civil > service and they are on mandatory overtime. On Monday and Wednesday he goes > straight from work to get Macey at school at 9 am and stays with her till > noon at therapy. Then takes her back to school and goes home to get some > sleep. After school I usually go visit my mom or my MIL so that Les can > finish his sleep and then we all eat dinner together right before he heads > off to work (7:15 p.m.). Thankfully next semester my classes are on Tues > and Thurs so I can start doing the therapy visits. Plus after thanksgiving > he will be going to 4 p.m. to 4 am shifts. Those should be interesting. > Depending on the medical appointment he will go with me. If it's a checkup > then he doesn't but if there is new info being discussed or if the doc has > asked that we both come then we'll also bring his mom along so that we can > talk to the doc and she watches Macey. Les cleans the kitchen for me > because I have a very weak stomach but I mop and clean the counters. That's > pretty much all I've asked him to do, I just can't handle doing those > dishes. He is a very good cook but on his work schedule right now can't do > much of it. He also is good with the laundry. Les and I have a long > history. We've been married then divorced then remarried so we've had a > chance to work out most of the kinks and decide that we wanted to be > together. He's such a cutie. > > Ursula - & Macey (4 yr old w/CVID) mom > > > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 I had to answer this one separately.....A HUSBAND that helps, what is that???? ===== and (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) mom to Evan 6, 4 and Abby Rose 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Annette: My husband tries to help around the house, but I really wished that he wouldn't. He tries so hard, but I like the house organized my way--not his. He's 6'4 " and wants everything up where he can reach it--I'm 5'6 " and would rather bend down than drag around a step ladder! As for the medical stuff--he's aware of when we have appointments, but unless it's a biggy--like when Jake or has surgury or a major medical test--he doesn't come with us. He knows that has an immune def., but if you ask him what it is he can't tell you the most recent diagnosis. He knows that Jake has speech therapy twice a week, but he doesn't know when or where. He leaves the routine things for me, but he is there for the rest. He's also good at making sure the boys both take their medicines and even reminds me to have them take it. --mom to --dysgammaglobulinemia Weekend > >Date: Sat, 13 Nov 1999 20:50:31 -0500 > > > >Macey is doing ok. She has a small cough which comes and goes and she > >starts coughing when she tries to do her peak flows. Small fever this > >morning but probably from the coughing. She had another fall today. > >Scraped her hands up but she finally threw her arms out in front of her to > >catch herself so there was no hit to the head this time. The ped made the > >neuro referral Friday but they called one not on our insurance so it will > >have to be redone on Monday. Good thing too because this doc couldn't get > >her in till January 19. Plus the one they should have called is at the > >same > >hospital where her brain MRI is on file so that will help. Everything is > >going well. Motility is still good and her sinuses are staying clear. > >Seems her chest is the thing right now but nothing her mom or grandmom > >haven't also had trouble with lately. We're still giving more albuterol > >treatments than I'm comfortable with right now, especially with the Flovent > >also on board. > > > >So that's the mini-update on Macey, now on to look through the rest of the > >mail. > > > >Ursula - & Macey (4 yr old w/CVID) mom > > > > > > > >------------------------------------------------------------------------ > >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. > ><< text3.html >> > > > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 In a message dated 11/14/99 3:23:44 PM Eastern Standard Time, annettelennon2@... writes: << Have a questions for all the wives out there? How many husbands help with everything, housework, cooking chores around the house? and also medical appointments? >> Hi Annette, My husband and I have been together for 19 years, married for over 18 years. Walt is great about helping around the house; he helps with dinner if he's home on time, helps with cleanup, bathing the two boys (our youngest children), laundry, homework, etc. He'll do 's tube feedings and give him medicines. The only thing he won't do is medical appointments. He hates going anywhere near the hospital (all of 's doctors are at Children's Hospital of Philadelphia). He's pretty honest about it, though. He handles all of the insurance stuff though, cause I hate that crap. I figure it's an even swap. Debbie, Mom to , 3.5 yrs,Severe Combined Immunodeficiency post Bone Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, developmental delays, CVI, seizure disorder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Dear Ursula: Sorry to hear Macey is so sick again, I hope the peds can come up with the answer this morning. I came down with strep yesterday caught it at work at urgent care. I don't know how great it is to be expose to all the illness. I try to change and shower first thing when I get home so I don't expose alissa to everything. Your husband is a real nice guy, it sounds like you both have your act together and have a real team effort going. I guess I am having a pity party for myself this weekend. We split the chores equally in the house. Please give Macey a big hug from alissa and hope she is doing better tomorrow, will keep your family in our prayers, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: RE: Weekend >Date: Sun, 14 Nov 1999 17:16:29 -0500 > >Annette - I do hope they're able to find those labs. Hate to have to poke >Alissa all over again. Macey's cough is worse and the albuterol is not >helping or if it is it's only for an hour or two. Spoke to on call doc >this >morning because I was trying to distinguish between a cough in the throat >and one that's in the chest. Even though it sounds a lot like a bark I >still couldn't tell. And since the albuterol wasn't working I was thinking >this was all a throat thing. We talked for a while, went over options and >decided to give her one loading dose of Prelone to get her by till morning >with another dose tonight if needed. Our regular ped will see her tomorrow >and do a chest xray and cbc. I've just finished giving her another >treatment and she has another low grade fever but her cough sound more >productive now and she can feel the " stuff " coming up into her throat when >she coughs. Now if she would just spit it out. I just want to get her >through till tomorrow. > >Regarding hubby's. I must say I have really lucked out when it comes to >mine. Les works 8 am to 8 p.m., 7 days a week right now. He is civil >service and they are on mandatory overtime. On Monday and Wednesday he >goes >straight from work to get Macey at school at 9 am and stays with her till >noon at therapy. Then takes her back to school and goes home to get some >sleep. After school I usually go visit my mom or my MIL so that Les can >finish his sleep and then we all eat dinner together right before he heads >off to work (7:15 p.m.). Thankfully next semester my classes are on Tues >and Thurs so I can start doing the therapy visits. Plus after thanksgiving >he will be going to 4 p.m. to 4 am shifts. Those should be interesting. >Depending on the medical appointment he will go with me. If it's a checkup >then he doesn't but if there is new info being discussed or if the doc has >asked that we both come then we'll also bring his mom along so that we can >talk to the doc and she watches Macey. Les cleans the kitchen for me >because I have a very weak stomach but I mop and clean the counters. >That's >pretty much all I've asked him to do, I just can't handle doing those >dishes. He is a very good cook but on his work schedule right now can't do >much of it. He also is good with the laundry. Les and I have a long >history. We've been married then divorced then remarried so we've had a >chance to work out most of the kinks and decide that we wanted to be >together. He's such a cutie. > >Ursula - & Macey (4 yr old w/CVID) mom > > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Dear : Hope Abbey is doing better and is on the mend, will keep you in our prayers, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weekend >Date: Sun, 14 Nov 1999 17:44:09 -0800 (PST) > >I had to answer this one separately.....A HUSBAND that >helps, what is that???? > >===== > and >(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and >leukopenia) >mom to Evan 6, 4 and Abby Rose 2 >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 : Thank you for your insight it sounds like you have a good arrangement. hope your week goes well, I would have a real problem with the height thing for I am only five foot four. take care, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: Weekend >Date: Sun, 14 Nov 1999 20:48:13 -0500 > >Annette: > >My husband tries to help around the house, but I really wished that he >wouldn't. He tries so hard, but I like the house organized my way--not >his. >He's 6'4 " and wants everything up where he can reach it--I'm 5'6 " and would >rather bend down than drag around a step ladder! > >As for the medical stuff--he's aware of when we have appointments, but >unless it's a biggy--like when Jake or has surgury or a major medical >test--he doesn't come with us. He knows that has an immune def., but >if you ask him what it is he can't tell you the most recent diagnosis. He >knows that Jake has speech therapy twice a week, but he doesn't know when >or >where. He leaves the routine things for me, but he is there for the rest. >He's also good at making sure the boys both take their medicines and even >reminds me to have them take it. > >--mom to --dysgammaglobulinemia > Weekend > > >Date: Sat, 13 Nov 1999 20:50:31 -0500 > > > > > >Macey is doing ok. She has a small cough which comes and goes and she > > >starts coughing when she tries to do her peak flows. Small fever this > > >morning but probably from the coughing. She had another fall today. > > >Scraped her hands up but she finally threw her arms out in front of her >to > > >catch herself so there was no hit to the head this time. The ped made >the > > >neuro referral Friday but they called one not on our insurance so it >will > > >have to be redone on Monday. Good thing too because this doc couldn't >get > > >her in till January 19. Plus the one they should have called is at the > > >same > > >hospital where her brain MRI is on file so that will help. Everything >is > > >going well. Motility is still good and her sinuses are staying clear. > > >Seems her chest is the thing right now but nothing her mom or grandmom > > >haven't also had trouble with lately. We're still giving more >albuterol > > >treatments than I'm comfortable with right now, especially with the >Flovent > > >also on board. > > > > > >So that's the mini-update on Macey, now on to look through the rest of >the > > >mail. > > > > > >Ursula - & Macey (4 yr old w/CVID) mom > > > > > > > > > > > > >------------------------------------------------------------------------ > > >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. > > ><< text3.html >> > > > > > 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. > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Debbie: Thank you for your answer, it sounds like you also have an arrangement that works, you are a very strong lady to do all the medical by yourself. I hope is doing better and he is feeling well this week. Do you do any shopping at the Ben lin outlet stores. We used to travel to Philly from Dover AFB to do all our big shopping and I also have a very fond memory of the night we came back from HOlland and a twelve hour flight how kind all the people were when we landed at Philadephia airport. They found us a rental car and even helped us to find a hotel for the night. When you travel long distances with a sick baby we really appreciated it. Well sorry for the long speech but saw where you were from, Thanks, annette and alissa >From: PIDDJS@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weekend >Date: Mon, 15 Nov 1999 02:03:36 EST > >In a message dated 11/14/99 3:23:44 PM Eastern Standard Time, >annettelennon2@... writes: > ><< Have a questions for all the wives > out there? How many husbands help with everything, housework, cooking >chores > around the house? and also medical appointments? >> > >Hi Annette, >My husband and I have been together for 19 years, married for over 18 >years. >Walt is great about helping around the house; he helps with dinner if he's >home on time, helps with cleanup, bathing the two boys (our youngest >children), laundry, homework, etc. He'll do 's tube feedings and give >him medicines. The only thing he won't do is medical appointments. He hates >going anywhere near the hospital (all of 's doctors are at Children's >Hospital of Philadelphia). He's pretty honest about it, though. He handles >all of the insurance stuff though, cause I hate that crap. I figure it's an >even swap. > >Debbie, Mom to , 3.5 yrs,Severe Combined Immunodeficiency post Bone >Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >developmental delays, CVI, seizure disorder > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 I'll second that one, LOL ;o) But to be fair, my hubby helps sometimes. Just wish he would have the incentive to really know what is going on with instead of just having an idea of the basics. ;o) Re: Weekend > > >I had to answer this one separately.....A HUSBAND that >helps, what is that???? > >===== > and >(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) >mom to Evan 6, 4 and Abby Rose 2 >>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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hi , Are we married to the same man!?! LOL!!!! My hubby is the same way! ;o) Re: Weekend > > >Annette: > >My husband tries to help around the house, but I really wished that he >wouldn't. He tries so hard, but I like the house organized my way--not his. >He's 6'4 " and wants everything up where he can reach it--I'm 5'6 " and would >rather bend down than drag around a step ladder! > >As for the medical stuff--he's aware of when we have appointments, but >unless it's a biggy--like when Jake or has surgury or a major medical >test--he doesn't come with us. He knows that has an immune def., but >if you ask him what it is he can't tell you the most recent diagnosis. He >knows that Jake has speech therapy twice a week, but he doesn't know when or >where. He leaves the routine things for me, but he is there for the rest. >He's also good at making sure the boys both take their medicines and even >reminds me to have them take it. > >--mom to --dysgammaglobulinemia > Weekend >> >Date: Sat, 13 Nov 1999 20:50:31 -0500 >> > >> >Macey is doing ok. She has a small cough which comes and goes and she >> >starts coughing when she tries to do her peak flows. Small fever this >> >morning but probably from the coughing. She had another fall today. >> >Scraped her hands up but she finally threw her arms out in front of her >to >> >catch herself so there was no hit to the head this time. The ped made >the >> >neuro referral Friday but they called one not on our insurance so it will >> >have to be redone on Monday. Good thing too because this doc couldn't >get >> >her in till January 19. Plus the one they should have called is at the >> >same >> >hospital where her brain MRI is on file so that will help. Everything is >> >going well. Motility is still good and her sinuses are staying clear. >> >Seems her chest is the thing right now but nothing her mom or grandmom >> >haven't also had trouble with lately. We're still giving more albuterol >> >treatments than I'm comfortable with right now, especially with the >Flovent >> >also on board. >> > >> >So that's the mini-update on Macey, now on to look through the rest of >the >> >mail. >> > >> >Ursula - & Macey (4 yr old w/CVID) mom >> > >> > >> > >> >------------------------------------------------------------------------ >> >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. >> ><< text3.html >> >> >> > 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. > >>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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Naw,, I am just a mom with a 24 hour a day job, LOL. Re: Weekend >> >> >> > >> > >> >I had to answer this one separately.....A HUSBAND that >> >helps, what is that???? >> > >> >===== >> > and >> >(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and >>leukopenia) >> >mom to Evan 6, 4 and Abby Rose 2 >> >>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. >> >> >>------------------------------------------------------------------------ >>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. >><< text3.html >> > >>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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 10:40:41 AM Eastern Standard Time, ward@... writes: << but I think he doesn't feel he can do it...he does go with me to the major appointments..such as biopsy and such..but I'm on my own with the rest..all hospitalizations I stay the whole time and he takes care of the other kids..this is a little stressful but I guess I understand where he is coming from..hospitals and such terrify him.. >> Hi , Just this year, had an upper GI barium study, endoscopy, liver biopsy, colonoscopy and sedated CT scan, and Walt missed every fun-filled minute! was hospitalized 3 times, and " lucky me " got to sleep next to his crib on the fold-out chair that only folds out half-way. But, like you, I understand that in hospitals, my husband feels overwhelmed and powerless. He's got an engineering mind, and he struggles to understand medical terminology. And for a macho Italian guy, he's a marshmallow when it comes to his kids. He truly can't stand to see them hurt in any way, especially his " little man " , . Most people on this list don't realize that was in the hospital from age 5 months to 9 months, and he was on a ventilator for two of those months. He was horribly sick, and watching him suffer was the most awful thing I have ever experienced. It's the only time I've ever seen my husband cry. Walt takes care of me, so that I can take care of . He makes sure my van is always filled with gas, he checks my wallet to make sure I have money, he makes sure my cell-phone is charged, on days when I'm at CHOP with he makes sure he's home a little early to make dinner so I can take it easy when and I get home, and he makes sure I always have my favorite beer in the house. We have three other children, (one of them is a teenager!! AAGGHH!!) so we HAVE to share household and family responsibilities. But long ago we decided that instead of trying to make the relationship/partnership " equal " all the time, we would each bring our individual strengths to the marriage, and do what we each do best. It's not always " equal " , but neither is life. Sorry to ramble. Take care everyone, Debbie, Mom to , who is just too cute Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Debbie my husband is totally clueless...I mean that with love but I'm on my own with both DR's and house as well as all children's activities...he works I do all the rest plus work....ugh..I have tried everything to get him to help..but I think he doesn't feel he can do it...he does go with me to the major appointments..such as biopsy and such..but I'm on my own with the rest..all hospitalizations I stay the whole time and he takes care of the other kids..this is a little stressful but I guess I understand where he is coming from..hospitals and such terrify him..but there is times that he surprises me..I'm still waiting for the big one..lol... mom to Tony , cvid,chronic sinusitis,severe chronic neutropenia Re: Weekend >From: PIDDJS@... > >In a message dated 11/14/99 3:23:44 PM Eastern Standard Time, >annettelennon2@... writes: > ><< Have a questions for all the wives > out there? How many husbands help with everything, housework, cooking chores > around the house? and also medical appointments? >> > >Hi Annette, >My husband and I have been together for 19 years, married for over 18 years. >Walt is great about helping around the house; he helps with dinner if he's >home on time, helps with cleanup, bathing the two boys (our youngest >children), laundry, homework, etc. He'll do 's tube feedings and give >him medicines. The only thing he won't do is medical appointments. He hates >going anywhere near the hospital (all of 's doctors are at Children's >Hospital of Philadelphia). He's pretty honest about it, though. He handles >all of the insurance stuff though, cause I hate that crap. I figure it's an >even swap. > >Debbie, Mom to , 3.5 yrs,Severe Combined Immunodeficiency post Bone >Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >developmental delays, CVI, seizure disorder > >>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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 > > Debbie my husband is totally clueless... My husband is a great guy, is involved with most everything the boys do except - DOCTORS. In my husband's viewpoint " has some kind of immune system thing " . That seems to be all he is interested in knowing, despite the fact he is employed in research at the OU College of Medicine and works with docs everyday. I think our " division " of responsibilities is based on how young we were when we got married, and who finished college first. It was easier for the person who had paid sick leave and vacation first (me) to take the boys to the doctor, while profs were less " understanding " of Bob skipping a class. However, since he was always home before me, he is the primary cook and bottle washer. I'll clean up after the kids any day if I don't have to mess with dishes Our oldest son was " kind enough " to be born on Luther King Day (a school holiday), and our youngest arrived during a break between school terms - so dad was present for the deliveries even though he did not attend a single o.b. appointment. We both work full time now, and Bob took our oldest to the doctor for the first time two weeks ago. He had no choice, I had broken a couple of bones in my foot the day before. I don't think he enjoyed the experience much, but he went. Perhaps you moms need a good excuse for dad to take the child to the doctor? Truthfully, I think it is really a gender thing - women WANT TO KNOW, while men seem more willing to just accept what the doctor says and heck the wife can just tell me when she gets back ---- any thoughts on this?? ---------------------- Conatser conatser@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 I was very fortunate. My husband used to do all of the cooking. He would also go to every doctor's appointment that he could possibly make (sometimes he had to work and wasn't able to go). When our son was in the hospital, he would stay with him all night after working all day, so that I could spend some time with our daughter. He helped me clean the house and I helped him do the yard work. He couldn't always explain to someone all of our son's illnesses, but he did the best that he could. Our children were actually his step children, but no one would have guessed unless they knew our family. Our daughter looked a great deal like him and our son looks a great deal like me and my husband loved them both dearly as they did him. We miss him greatly. He passed away two years ago from a sudden massive heart attack. He had never had any heart problems before. Thanks for letting me share. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Lee-Sorry for the loss of your husband. ===== and (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) mom to Evan 6, 4 and Abby Rose 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Dear : I have a list of questions I send with my husband when he takes our daughter to the doctor and I work. He works opposite of the days I do so he has two days of taking care of the house and kid, interesting isn't it. You are right also. He takes whatever the doctor says without question, take care, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weekend >Date: Mon, 15 Nov 1999 13:16:18 -0600 (Central Standard Time) > > > > > > > > Debbie my husband is totally clueless... > > >My husband is a great guy, is involved with most >everything the boys do except - DOCTORS. > >In my husband's viewpoint " has some kind of >immune system thing " . That seems to be all he is >interested in knowing, despite the fact he is >employed in research at the OU College of Medicine >and works with docs everyday. > >I think our " division " of responsibilities is based >on how young we were when we got married, and who >finished college first. It was easier for the person who >had paid sick leave and vacation first (me) to take the >boys to the doctor, while profs were less " understanding " >of Bob skipping a class. However, since he was always home >before me, he is the primary cook and bottle washer. >I'll clean up after the kids any day if I don't have to >mess with dishes > >Our oldest son was " kind enough " to be born on >Luther King Day (a school holiday), and our youngest >arrived during a break between school terms - so dad >was present for the deliveries even though he did not >attend a single o.b. appointment. > >We both work full time now, and Bob took our oldest to >the doctor for the first time two weeks ago. He had no >choice, I had broken a couple of bones in my foot the day >before. I don't think he enjoyed the experience much, >but he went. > >Perhaps you moms need a good excuse for dad to take the >child to the doctor? > >Truthfully, I think it is really a gender thing - women >WANT TO KNOW, while men seem more willing to just accept >what the doctor says and heck the wife can just tell me >when she gets back ---- any thoughts on this?? >---------------------- > Conatser >conatser@... > > > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Dear Debbie, You have a wonderful husband, it sound alot like the old fashioned marriage my parents had. I do not think my mom ever pumped gas for her car her whole life, and he also made sure that she always had money in her purse/ take care, annette and alissa >From: PIDDJS@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weekend >Date: Mon, 15 Nov 1999 17:14:45 EST > >In a message dated 11/15/99 10:40:41 AM Eastern Standard Time, >ward@... >writes: > ><< but I think he doesn't feel he can do it...he does go with me to the > major appointments..such as biopsy and such..but I'm on my own with the > rest..all hospitalizations I stay the whole time and he takes care of the > other kids..this is a little stressful but I guess I understand where he >is > coming from..hospitals and such terrify him.. >> > >Hi , >Just this year, had an upper GI barium study, endoscopy, liver >biopsy, >colonoscopy and sedated CT scan, and Walt missed every fun-filled minute! > was hospitalized 3 times, and " lucky me " got to sleep next to his >crib >on the fold-out chair that only folds out half-way. But, like you, I >understand that in hospitals, my husband feels overwhelmed and powerless. >He's got an engineering mind, and he struggles to understand medical >terminology. And for a macho Italian guy, he's a marshmallow when it comes >to >his kids. He truly can't stand to see them hurt in any way, especially his > " little man " , . Most people on this list don't realize that was >in >the hospital from age 5 months to 9 months, and he was on a ventilator for >two of those months. He was horribly sick, and watching him suffer was the >most awful thing I have ever experienced. It's the only time I've ever seen >my husband cry. > >Walt takes care of me, so that I can take care of . He makes sure my >van >is always filled with gas, he checks my wallet to make sure I have money, >he >makes sure my cell-phone is charged, on days when I'm at CHOP with he >makes sure he's home a little early to make dinner so I can take it easy >when > and I get home, and he makes sure I always have my favorite beer in >the >house. We have three other children, (one of them is a teenager!! AAGGHH!!) >so we HAVE to share household and family responsibilities. But long ago we >decided that instead of trying to make the relationship/partnership " equal " >all the time, we would each bring our individual strengths to the marriage, >and do what we each do best. It's not always " equal " , but neither is life. > >Sorry to ramble. >Take care everyone, >Debbie, Mom to , who is just too cute > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Dear Lee: YOu had a wonderful husband, you were truly blessed, thank you for sharing, annette and alissa >From: Kmeyer1020@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Weekend >Date: Mon, 15 Nov 1999 20:21:12 EST > >I was very fortunate. My husband used to do all of the cooking. He would >also go to every doctor's appointment that he could possibly make >(sometimes >he had to work and wasn't able to go). When our son was in the hospital, >he >would stay with him all night after working all day, so that I could spend >some time with our daughter. He helped me clean the house and I helped him >do the yard work. He couldn't always explain to someone all of our son's >illnesses, but he did the best that he could. Our children were actually >his >step children, but no one would have guessed unless they knew our family. >Our daughter looked a great deal like him and our son looks a great deal >like >me and my husband loved them both dearly as they did him. We miss him >greatly. He passed away two years ago from a sudden massive heart attack. >He had never had any heart problems before. Thanks for letting me share. >Lee > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Dear Annette, Yes, I was blessed in having a wonderful husband and now I am blessed in having some very wonderful memories. Thanks for listening. Lee Quote Link to comment Share on other sites More sharing options...
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