Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 In a message dated 2/7/02 1:23:49 AM Pacific Standard Time, writes: > . I think there is way too much > distraction for PB. He prefers to go to a quiet work room and be with the > aide or kids in one-on-one situations. > > Hope this is a little helpful. > > You hit the nail on the head, Beth..... " one on one " .... does MUCH better with me, and the OT that comes to the house (unfortunately, I can't use her for 's assess/eval as she is from the school dist.!!). Your post was very informative....I am copying it for school.....is that okay? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Hi Beth, Jamey uses both the Kineret and Vioxx daily. The Kineret needs to " build up " in the system. It takes about 2 weeks for it to kick in. We had a wild night last night with TPN. The pump for some reason malfunctioned and Jamey flushed blood into his line. It scared me half to death, and I couldn't get the clamps closed fast enough. The home care nurse came with a new pump and was here till about 2 a.m. Hopefully we'll get some rest today! Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hi , Thanks for the info. I hope that things have calmed down with the tpn & you & Jamey had more restful nights than you had on Sunday. How long do they anticipate having Jamey on the tpn? Have you seen any changes from it yet? I'm not very familiar with tpn & how long it takes to kick in....I basically just know what it is & what it is used for. I will keep you, Jamey & your family in my prayers. Thanks again for the Kineret info! Have a blessed day! Love & Hugs, Beth, Mom to Wade, 15 (CVID,etc) >From: " mich2minn " <Mich2minn@...> >Reply- > >Subject: Re: Beth >Date: Mon, 29 Apr 2002 15:51:17 -0000 > >Hi Beth, > >Jamey uses both the Kineret and Vioxx daily. > >The Kineret needs to " build up " in the system. It takes about 2 >weeks for it to kick in. > >We had a wild night last night with TPN. The pump for some reason >malfunctioned and Jamey flushed blood into his line. It scared me >half to death, and I couldn't get the clamps closed fast enough. The >home care nurse came with a new pump and was here till about 2 a.m. > >Hopefully we'll get some rest today! >Sincerely, > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Hi, Thanks for the thoughts & praters & info! I was wondering about the drop seizures because definitely has some neuroligical " stuff " happening with this illness & they haven't figured out what or why yet. Over the last 48 -72 hours, he has fallen 4 or 5 times. He gets up, starts to move & just falls. He denies feeling dizzy & he falls hard, with no apparent effort to catch himself or break the fall. It's almost as if he doesn't know he's falling until he hits the floor. Sometimes it happens aftre he has been standing or walking, it's not solely when he first stands up.Do you know if a nerve compression can cause this type of reaction? Any thoughts? Wade sees the ped again this morning, so hopefully some of the csf tests will be back or some pece of this puzzle will fall into place so that something can be done to help relieve his pain. As far as the sinus stuff goes, unfortunately wwe are old pros at that. Wade has had 22 sinus surgeries in his lifetime & more ct scans, oral antibiotics,iv antibiotics, washes,etc. than I can count. He actually has another sinus infection now also & is back on Omnicef & also the nebulized antibiotics. Have you tried those yet with Kody? They are very easy to use & I feel like they have helped to keep things at bay, along with either oral abx's or iv abx's. Is Kody starting iv antibiotics today? Which one? You might want to ask about using the same antibiotic in the nebulized form along with. That really seemed to help clear things faster with Wade the last time. Just a thought. Wade gets pale & pasty looking with a severe sinus infection too. Please feel free to ask me any questions you may have about sinus stuff or the special ed, as we are about halfway through on that process, although you probably know as much or more than I do at this point. I'm always here to listen & support, even if I cry along with you! Gotta run take Wade for his appt. I'll keep you posted. Big (((HUGS))) to my Batman! So glad he likes that hat! Keep your chin up & I'll talk to you soon. Love & hugs, Beth >From: Diane Schmidt <schmidtzoo@...> >Reply- > >Subject: Re:Beth >Date: Mon, 13 May 2002 09:25:44 -0700 > >Opps sorry forgot to tell you what the drop seizures look like! Kody's >drop seizures were strange. I didn't know that was what was happening. >He'd just fall down, get right back up and keep going. I thought he was >clumsy. I thought I bought his shoes too big and they were tripping him >up. I thought he was tired or his legs hurt. I thought he just didn't >pick his feet up when he walked. He would just be walking or standing >there and kind of collapse like his bones were suddenly jello. Then in >mere seconds up he'd pop as though nothing had happened at all. Very >weird. When questioned he didn't know he fell. Why do you ask? Do you >think is experiencing them? I sure hope not! Poor kid has had >enough!! >Diane > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Opps sorry forgot to tell you what the drop seizures look like! Kody's drop seizures were strange. I didn't know that was what was happening. He'd just fall down, get right back up and keep going. I thought he was clumsy. I thought I bought his shoes too big and they were tripping him up. I thought he was tired or his legs hurt. I thought he just didn't pick his feet up when he walked. He would just be walking or standing there and kind of collapse like his bones were suddenly jello. Then in mere seconds up he'd pop as though nothing had happened at all. Very weird. When questioned he didn't know he fell. Why do you ask? Do you think is experiencing them? I sure hope not! Poor kid has had enough!! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 It sure sounds like the drop seizures. Kody never tried to stop his fall either. Keep me posted as to how is doing. Prayers going up steady for him! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Hi Beth: I was so happy to see a post from you. I'm sorry your not feeling real good though. Sounds like CJ is doing well. Concerning your desire to have another baby, have you talked to CJs doctor? Colton's told Jodi that if she had a girl the chances of her having AIH went up considerably. Jodi and her husband are not together right now and I think it will end up in divorce but she too would like to have another child. Of course it will be their decision if she remarries but knowing what I know I sure wouldn't want to take the chance. Seeing what Jodi went through and knowing she could not be a donor if it were needed scares the heck out of me. I don't mean it to sound like I think your crazy but please check into it every way to Sunday before making your decision and PLEASE listen to your doctors because we want you to stay safe too. I Think Of You Often. God bless you and your family. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 In a message dated 05/30/2002 7:16:24 PM Pacific Daylight Time, sweetpea777@... writes: > It's > called, Squamous cell carcinoma, which does spread and the only reason > he thinks it's this is because of the crusty part right near it. I Hi ette, yes it can spread, but it is a very very slow spread. One of the times my Dad had lung cancer treatment they thought it could be a sqaumous cell rather than the other type he has had off an on for 24 years, so I did a lot of research. Hang in there, like I said my uncle had that surgery for basal cell and it was an involved surgery and the very next week he drove over here from San , I was amazed! And he is in his late '60's. Take care, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi Diane, I would be interested in those De's pictures too. Do you have the email of the person or website?We had a test for because she had the heart defect and the immune problem but were told that she had a 75% chance that is was not De's--whatever that means. As the test was done over 4 years ago maybe it was not the most up to date test. Thanks, Martha (mom to Chrissy, IgA deficiency, Polysaccharide coated antibody deficiency, truncus arteriosus etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 No problem, Martha. I've transferred them to my other computer though ( I wanted to print them, don't have the printer set up to my laptop) so I probably won't get to it until tomorrow, but be on the look out from a " withlovefromdee@... " address that is me! From what I have learned...and researched...and am coming to understand, most tests for Di is the FISH test, and they look for the 22q11 deletion only. Truth is, you can have Di with no 22q11 deletion, but a different cause, like a deletion on chromosome 10. Not only that, but it is possible to have Di and have such a small deletion that it isn't picked up by the FISH. That doesn't mean that your child is less effected by it though. Now most websites, even parts of Shprintzen's website, all refer to only the 22q11 deletion ( " no deletion, no Di " seems to be the quote of the day) but yet in other papers (even written by Shprintzen) and reports it is clearly stated that is not true. So when you read some of the websites I will send you, remember that. I am not really sure why other causes for Di are so overlooked, granted the 22q11 is the main reason why but still it seems to me that maybe a lot of kids aren't being diagnosed because doctors are being led to believe that 22q11 is the ONLY reason. Anyhow, be on the look out for the pictures from my aol address. Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi Sandi, Perhaps my explanation was not very clear...I think I said that steriods CAN (not always) cause a super infection. The ENT ( & other docs as well)explained it to me not as something that supresses the immune system but that oral steroids in the face of a bacterial infection can cause the INFECTION to worsen & often become drug resistant & harder to treat. Wade has had one instance where that actually happened & that is how the conversation of steroids & bacteria came about. He has also been given prednisone with antbiotics for pneumonia several times & the subject of super infection has not been mentioned.I don't recall ever using oral steriods with a sinus infection, but we have used topical steroids & liquid steroids instilled through the sinus catheters during a sinus infection.Perhaps it is only relative with certain bacteria? I know that we try to stay away from oral steroids as much as possible because they do supress the immune system & I have also been told that they can interfere with the ivig doing it's job properly. Maybe it's different with because he's not on ivig? Or maybe it varies with the different types of PID? I have no idea. Again, I guess we're back to Ursula's favorite quote: " Ask 5 docs the same question & you'll get 6 different answers " ! You just gotta LOVE this disease! Hope Brain is doing well! Beth, Mom to Wade,15 (CVID,GERD,JRA,Asthma,Chronic Sinusitis,ADD,IVIG & STILL trying to recover from TWO recent bouts of Aseptic Meningitis) >From: SassyKay418@... >Reply- > >Subject: Beth >Date: Sat, 8 Jun 2002 13:49:32 EDT > >Hi Beth, > You mentioned in your e-mail that steroids cause a " super infection " of >the >sinuses. I have always been told that short term steroids boost the immune >system and help the sinuses clear (it works with every time). It is >with long term use that the immune system is suppressed. >Sandi, 's Mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Thanks Beth! I think the Prednisone helps because his sinus tissues swell shut when he is infected. Without the steroids, the antibiotics wouldn't be able to get to the sinuses. But, I don't like it!! I keep the Prednisone to a bare minimum. You can bet I'll be asking the Ped about the super infection. Besides, it was his idea for me to join this group Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Sandi, I would also ask your doc about the Sinuneb machine for nebulized antibiotics. You can also use it for other nebulized meds & prednisone is one of the ones on the list. Their claim is that hte med stays where it needs to be to treat the sinuses & there are little to no side effects. We have used it twice now...once to treat a stubborn sinus infection & we used it at the same time as the iv abx's & then we used it another time intially with Omnicef & then by itself for an additional 2 weeks. I have seen a significant difference in the amount of time it takes Wade to clear a sinus infection with the sinuneb rx's vs. without. our insurance totally covered the cost of the machine & I paid my regular prescription co-pay for the actual drugs ($20). Everything is shipped directly to your house & they always call to check on you. You can learn more about it at their website <www.sinuspharmacy.com>. It might be worth asking about anyway. The treatments are quicker than the asthma nebs & it is not invasive, you just hold the pipe under your nose & breathe regularly. Good Luck! Hope Brain id oing well & enjoying the beginning of summer! Beth, Mom to Wade,15 (CVID,etc...) >From: SassyKay418@... >Reply- > >Subject: Re: Beth >Date: Sun, 9 Jun 2002 02:28:53 EDT > >Thanks Beth! I think the Prednisone helps because his sinus tissues >swell shut when he is infected. Without the steroids, the antibiotics >wouldn't be able to get to the sinuses. But, I don't like it!! I keep the >Prednisone to a bare minimum. You can bet I'll be asking the Ped about the >super infection. Besides, it was his idea for me to join this group >Sandi, 's Mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Beth, Thank you for the information on the Sinuneb. I plan on asking the Ped about it on our next trip. I hope you guys are enjoying the summer also!! We have a beautiful day here. Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Hi Beth, I hope Ben's first communion is the best! Have a wonderful weekend. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Hi Beth, I hope your dh returns well rested from his stay at the Heartbreak Hotel LOL and Ben is ready to go to the barber with him. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Dear Beth, a huge thank you also. She is having such a hard time and feels like a prisoner in her sisters home. She literally has to sneak food when they go to bed or leave the house in the morning. She told me that the police have been there several times for her sisters actions. Bridget deserves so much more. Thank your for not letting me down. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 From: Beth, Mom to Wade, 15 (CVID,etc...) & a TERRIFIC case of teenageritits :~ LOL Hi Diane, Thanks for thinking of us! Wade is hanging in there...driving me insane with school issues (you know ALL the teachers LIE about missing work & they are ALL out to get him ); socializing a little too much & fighting the sinus infection from & **((! He has had this one going on for at least 3 months & probably longer, has failed 3 rounds of antibiotics & has had to resort to taking Percocet to be able to sleep at night due to the extreme sinus pressure. He went back to the doctor again on Monday & he has a CT scan scheduled for next Monday. Ped thinks we'll probably end up back at ENT & on iv antibiotics but wants to wait for the CT results to be sure. That's too funny about Kody thinking that elephants have samarai swords! I thought about you & Kody ALOT during the IDF retreat, as I sat with a family with a daughter who has Di Syndrome, among other things. They were very nice & had quite a bit of knowledge on Di...it was interesting listening to them. You & Kody have to go to the next one....it was great fun! Even enjoyed himself & made a few new friends. Happy Halloween to my favorite Batman! Love & Hugs, Beth >From: schmidtzoo2002@... >Reply- > >Subject: Beth >Date: Wed, 30 Oct 2002 13:08:30 -0500 > >Hey Beth! How is Wade? I was just thinking about you the other day. >There was a sea of Batman costumes in the store, and I couldn't help but >think of our other Batman! Kody is going as an elephant this year, he chose >the costume a long time ago, but now I am having trouble convincing him >that elephants don't have samari swords. Sigh. I guess we could have a >superhero elephant???? >Diane, Mom to Kody > > " Beth Rathburn " <justinsmom87@...> wrote: > > >From: Beth, Mom to Wade,15 (CVID,etc.) > > > >le & , > >Congratulations on your wish trip! Here's hoping you have a BLAST!!!! > >Take lots of photos & send us one, please. > >, we want a full report when you return...5 > >pages,typed,double-spaced....LOL! > >Have fun! > >Love & Hugs, > >Beth > > > > > > > > > > > > > >>From: " le Penne " <DANIELLEPENNE@...> > >>Reply- > >> > >>Subject: Re: IDF survey? > >>Date: Tue, 29 Oct 2002 23:58:25 -0500 > >> > >>Thank you very much > >> > >>We leave tommorow for 's MAke A Wish.........HE > >>wished to meet the Blue Angels so they are flying us > >>to Florida to meet them. > >> > >>We will be back on Monday. > >>le > >> > > > > > >_________________________________________________________________ > >Get faster connections -- switch to MSN Internet Access! > >http://resourcecenter.msn.com/access/plans/default.asp > > > > > > > >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 October 30, 2002 Report Share Posted October 30, 2002 From: Beth, Mom to Wade, 15 (CVID,etc...) & a TERRIFIC case of teenageritits :~ LOL Hi Diane, Thanks for thinking of us! Wade is hanging in there...driving me insane with school issues (you know ALL the teachers LIE about missing work & they are ALL out to get him ); socializing a little too much & fighting the sinus infection from & **((! He has had this one going on for at least 3 months & probably longer, has failed 3 rounds of antibiotics & has had to resort to taking Percocet to be able to sleep at night due to the extreme sinus pressure. He went back to the doctor again on Monday & he has a CT scan scheduled for next Monday. Ped thinks we'll probably end up back at ENT & on iv antibiotics but wants to wait for the CT results to be sure. That's too funny about Kody thinking that elephants have samarai swords! I thought about you & Kody ALOT during the IDF retreat, as I sat with a family with a daughter who has Di Syndrome, among other things. They were very nice & had quite a bit of knowledge on Di...it was interesting listening to them. You & Kody have to go to the next one....it was great fun! Even enjoyed himself & made a few new friends. Happy Halloween to my favorite Batman! Love & Hugs, Beth >From: schmidtzoo2002@... >Reply- > >Subject: Beth >Date: Wed, 30 Oct 2002 13:08:30 -0500 > >Hey Beth! How is Wade? I was just thinking about you the other day. >There was a sea of Batman costumes in the store, and I couldn't help but >think of our other Batman! Kody is going as an elephant this year, he chose >the costume a long time ago, but now I am having trouble convincing him >that elephants don't have samari swords. Sigh. I guess we could have a >superhero elephant???? >Diane, Mom to Kody > > " Beth Rathburn " <justinsmom87@...> wrote: > > >From: Beth, Mom to Wade,15 (CVID,etc.) > > > >le & , > >Congratulations on your wish trip! Here's hoping you have a BLAST!!!! > >Take lots of photos & send us one, please. > >, we want a full report when you return...5 > >pages,typed,double-spaced....LOL! > >Have fun! > >Love & Hugs, > >Beth > > > > > > > > > > > > > >>From: " le Penne " <DANIELLEPENNE@...> > >>Reply- > >> > >>Subject: Re: IDF survey? > >>Date: Tue, 29 Oct 2002 23:58:25 -0500 > >> > >>Thank you very much > >> > >>We leave tommorow for 's MAke A Wish.........HE > >>wished to meet the Blue Angels so they are flying us > >>to Florida to meet them. > >> > >>We will be back on Monday. > >>le > >> > > > > > >_________________________________________________________________ > >Get faster connections -- switch to MSN Internet Access! > >http://resourcecenter.msn.com/access/plans/default.asp > > > > > > > >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 April 18, 2003 Report Share Posted April 18, 2003 In a message dated 4/18/03 3:34:29 AM Central Daylight Time, writes: > Karyn, has the ABA helped? Has it been mostly for skills or has 's > behavior been helped at all by it? And how is he dealing with his little > brother these days? How are YOU coping? Is respite still available? > Please write when you can. > In a sad sort of way I'm glad I'm not the only one whose kid " flunked " out of special Olympics and integrated youth group and all those other things that kids with ds are supposed to be sooo good at and really enjoy. is doing well with his ABA. It is amazing what that kid knows and doesn't use. Now we getting him to use some of that knowledge. He consistently makes progress on skills, mostly cutting, learning letters and sounds, communication-sentence or phrase use, I see.., I hear...., question asking, etc, moving through his reading program that they also use in school. We have worked on self regulation starting with learning to label emotions and moving on from there. It helps but still has a long way to go. Lots of times he remembers to take a deep breath rather than swearing. It is nice not to hear the swearing constantly but it still is several times a day. The aggression and destruction is greatly reduced which is major improvement. We are supposed to have another year and 1/2 of therapy before he ages out but our new Governor has proposed to eliminate intensive in-home therapy as an MA benefit. Advocates have gotten him to commit to funding but there will still be cuts. Most likely the kids like who are older and have been in the program for several years. Fortunately I may be able to get it funded through a different program but still worry about the possibility of no therapy. is in a life skills program in middle school. Much different from his inclusionary elem. school but he is thriving. Much less struggle in the a.m.He seems to feel much more successful and happy. They still work on academics but more in the community and things that enjoys. is generally good with (2 1/2) but toddlers can be very frustrating and not good behavioral role models. LOL!!!! does lots of " , No " which gets mad and yelling " no " back at . also thinks that if he screams long enough will give him what he wants which is generally true. Not great teaching for the two year old. We are stuck at home lots more since taking them anywhere together is hair raising. We still get monthly respite at the group home and usually send him for x-mas break and spring break. Our biggest struggle right now is the lack of sleeping. Actually getting up several times a night. He is day toilet trained but still wears pull-ups at night but futzes with them so much that he leaks every time. We are currently trying bed wetting medication to reduce night time urination but not helping so far. I started working part time at our state Autism Society. Only 10 hours a week and I won't be working much, if at all, during the summer. It is nice to actually use my brain occasionally. And be with people that speak in sentences. Sometimes I feel like I live in several worlds. There is the mom of a 14 year old with significant behavioral and developmental issues who has therapists and drs and special ed issues. Then there is the mom of the typical toddler that goes to play group and drops him at Grandma's and the babysitters. Boy, what a novel. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 Is that my long lost friend Beth? I miss you friend. Have not seen you, but know that you are there. How are you, and how kind just to say "hello". You have always been such a good friend. Yes, it's a very hard three weeks, and we still have two to go. Wish that we didn't do this anymore, but that's wishful thinking. Anyway, I will be able to catch up better with everyone, when it is all over. Glad to hear from you Beth. Be well friend. Love, Sue #2 -- Re: sorry for letting you down friends Wow Sue, it sounds like you have worked really really hard!!!!!!!!!!!!!! What a success!Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 In a message dated 6/26/2003 6:54:07 AM Eastern Daylight Time, paul.3@... writes: > And Charlyne, we had the Texas Instrument " Touch N Tell " boards with > removable overlays. He learned his shapes and colors from that, and later > reinfirced his alphabet and numbers. That was the way we figured out that > he has an incredible memory. But it was also something *he* could control. > > > Hope everyone is staying cool wherever you are. The heat has hit central > Ohio! Hi Beth, I think that's wonderful. I hope Ben is still moving forward. The heat has hit in the northest too. Charlyne Mom to Zeb 10 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Hi Beth, I am so happy that the summer was resful for you! Too bad though that there was the pain. I suppose school starts real soon again? I always have high regard for teachers. They are so important in everone's life. Most of us don't really appreciate that fact until many years after we are out of school. I know I didn't. Oh, I am glad to know that your dad had a good summer! I never heard of the Iressa. Then I only know one person at this time who is suffering from Cancer. I will have to ask her about the Iressa pill. Four months off of Chemo was certainly a nice break for him hey? Your mom is one of those folks who is a true angel. We need more folks just like her. I am doing okay Beth. The Stills is mainly under control, and I suffer usually from the Fibro or nerve damage. Will be needing fusion surgery in the right foot in a few months, but otherwise...I really shouldn't complain. You know Beth, I don't remember what you are taking for the Stills. If you get a chance would you let me know? thank you friend. From Wisconsin hugs for you Beth! tricia ***************************************************************************** ******* -- Re: Reynolds In a message dated 09/01/2003 8:42:57 AM Pacific Daylight Time, 2r1@... writes: > How are you doing? How has this summer been for you? > How are your mom & dad? > Hi Tricia! The summer was really restful (since I have the teacher summer vacation) but really had a summer full of arthritis..... I haven't felt to tired or sluggish, just pain. And I don't want to complain, but normally the pain is pretty well controlled---- My Dad had a good summer, they had put him on Iressa, but sadly it has stopped working and they are going to need to try something else starting next week. For those that Iressa works on though, what a blessing! It is a pill everyday with minor side effects. But maybe it was in the plan for Dad to have 4 months off of chemo to regain his strength for his fight. My Mom is just about the most wonderful person in the world, she has been there for every one of our families medical battles for the last 25 years, what an angel we have in our family. Thank you so much for asking, I hope you are doing okay! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Beth, you are my hero! I know that pain of the hips and it is so very severe. You work, and take such care with your parents. I will be keeping you and yours in my prayers with hopes that your dad does not have a tumor and that no matter what you will all be ok. I know you share the deepest love and that is what will shine always through your days. Take care and know we are always here for you. Biggest hugs, Pattymelt > Hoping your dad stays comfortable and you too..best wishes Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Beth, I just wnated to jump on to your post... My son had his STARband for 21 weeks. At the time, it seemed like an eternity! Every time I read a graduation post, all I could think of was that it wasn't us (boohoo) and when would it EVER happen. Now, looking back on it, 2 months after graduation, it seems like a million years ago, and that the whole thing was over in the blink of an eye. Must be sleep deprivation does funny things to your memory! LOL Once Dylan graduates, you will be surprised how fast the time has gone by! - mom to Aidan > Congratulations Cory and ! My son Dylan is 10 mos and just started his > Starband 2 weeks ago. It's great to hear that you had so much success with > it, very encouraging to us! I know we have a long way to go still. Did the > time go by fast now that you look back on it? It seems to be going so slow > already. > > Beth > Grand Rapids MI > > > >From: " Cory Schwemley " <cory6@c...> > >Reply-Plagiocephaly > > " Plagiocephaly " <Plagiocephaly > > >Subject: is a STARGrad!!!! > >Date: Mon, 5 Apr 2004 12:58:33 -0500 > > > > is officially a STARgrad now! He graduated from his STARband today. > >I am SO excited to be done but it is a little bittersweet. The helmet just > >became apart of who he is and now he just seems so OLD! LOL > > > >He went from 12mm to ~3mm, Bill said the measuring is not exact. I am SO > >happy we did the helmet when we did, he got great correction in just a > >little over 4 months. I do not regret putting him in the helmet at all. > > > >Thanks to all of you for all the advice and the shoulder to lean on when I > >needed it! I will stay around awhile... ;-) > > > >Cory, mom to (6/5/03-10 months today!) > >STARgrad 11/26/03-4/5/03, in OK > > _________________________________________________________________ > Tax headache? MSN Money provides relief with tax tips, tools, IRS forms and > more! http://moneycentral.msn.com/tax/workshop/welcome.asp Quote Link to comment Share on other sites More sharing options...
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