Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Patty: Did you get Caitlin's labs drawn tonight? Rob had his. I am anxious to get results tomorrow. How is her rash? I am still anxiously awaiting more on Rob's biopsy results. Although we know he has Alports syndrome, there are apparently different classifications of it and we still don't have the exact classification. Apparently, its a pretty rare disease and the nephrologist is consulting different pathologists about the results. Luckily, there are 8 pediatric nephrologists where Rob goes, so they all can put in their '2 cents worth' too. I'm trying not to bug his nephrologist, but the waiting always drives me crazy. With the biopsy being 8/6, its been more than enough time in my book! Keep us posted on Caitlin, ok? and Rob 15 Spondy On Thu, 9 Sep 2004 14:44:37 EDT Emeraldsx3@... writes: Hi : No fever, aches or pains. Though she says she is more tired than usual. I am starting to think about her thyroid. Alyssa has Hashimoto Disease, has recently tested positive for thyroid antibodies and Caitlin has never been tested. Her pediatrician wrote a script at her checkup for a thyroid test, but were trying to put it off until next week (sisters' endo check ups) and doing all three of them at once. I think I will just take her up to Quest and get it done tonight (if they are open late) and rule out/in a thyroid issue. That would be one explanation of being tired. Come to think of it she is gaining weight like Alyssa did when her thyroid shut down. She also is complaining of being cold in the house. Interesting how sometimes you get an " ah ha' moment! I just got one typing this out. See you always do good things for me LOL:) Hope we have some Emla cream left! Thank you for keeping her in your prayers today:) Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2004 Report Share Posted December 26, 2004 Patty: I am so glad to see you posting, but I have been so worried about you. How is the job hunt going? How are the girls and how are you feeling? Please give us an update when you can. and Rob 15 Spondy Hi Everyone: Sorry I haven't been on lately:( I wanted to get on here tonight and wish all of you and yours a Merry Christmas and a Happy New Year. Here's to an awesome, pain-free, healthy new year! Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Patty: Its so good to see you posting again. I'm sure you are happy a new year is upon us and hopefully this year will be a great year for you guys. How's the hubbie's job search going? I hope that things are on the way up for you. What a wonderful friend you are to think of your friend with chemo and let her know that she has your support. I love the idea of the jar of nice messages... Take care, and glad to see you back! and Rob 16 Spondy On Wed, 4 Jan 2006 14:08:29 EST ThreeMayEmeralds@... writes: Hello Everyone: I have a dear friend (back in VA) who is undergoing treatment for a rare aggressive cancer. Just before dx her husband of 20+ years left her and his family for a younger woman. I can't be there, physically, for her since we moved to NH, so I have sent her gifts when she had her first surgery and first chemo treatment. Of course, we chat on the phone and IM. She will have 6 chemo treatments and then start radiation. Hopefully the 6 will do it. I am hoping that you all could share some ideas of gifts to send. I just sent her a mini rose bush in a ladybug pot. Ladybugs for luck on the port and chemo #2, both scheduled for tomorrow. I don't want to just send flowers with each treatment, I would like something different. With so many people of this list I figured someone would have some awesome, creative and different ideas. Ladies and gents any suggestions please?????????? Thanks to all. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Hi : Thank you:) You said it.....I am praying that 2006 will be a better year! We are still waiting on Mark's clearance to start his new job. Since September 11, it takes that much longer. We are now in the 7th month of waiting. The idea of the jar and nice messages is definitely one I am going to do:) How's life your way? How is Rob doing? How about you.....feeling okay? Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Patty: I hope that clearance comes by very soon. Rob is doing good. He saw his rheumy, Dr. Passo, last Wednesday. Dr. P. was explaining to the resident that Rob's diagnoses 'will come at you from all sides'. Sigh. I just hate it when they talk about how unusual his case is, with the JAS and the Alport syndrome, as well as the lung issues. Anyway, Dr. P. said there's really nothing more that they can do for Rob, pain medicine wise, since he cannot take any NSAIDS at all or even aspirin because of his kidneys. Tylenol doesn't do much for him, and its the only thing he can take. His bad pain is the knees right now. A lot of it is hypermobility. He got fitted for new orthotics and we are to get him neoprene sleeves to go on his knees when he is working. The good news is that working at Target and the exercises and weight lifting he's been doing has improved his flexibility so very much! So that was a plus. He really looked better to Dr. P than he ever had, and Rob was cracking jokes and being his usual amusing self. Dr. P. commented that Rob was so much more animated now, and how quiet he was when he first started seeing Dr. P. Its because he feels better! was disheartened with the visit, because its like, why can't he be pain free? But I am just glad that he is doing as well as he is and able to function, and though he is in pain, he is dealing with it. I don't know, its mixed emotions. I'm in a bit of a flare, primarily because I went off my Enbrel for a month. I got two really nasty upper respiratory infections back to back and decided to let my immune system 'rest' for a bit...ha ha...so of course, it decided to get right back on track and attack my joints. Just started back on the Enbrel this past monday so looking forward to feeling better in a week or two. Rob was quite animated today talking about college and we are planning on starting to visit some once spring comes around, and this summer too. He's leaning towards doing his first year close to home, to get some prerequisites out of the way, and then applying to Purdue after that. He wants to major in engineering or engineering technology. He is really good at science and his science teacher has really been bragging on him lately! Just the confidence booster he needed. Voc rehab has gotten involved and we hope to get college money from them, so that will be a great help. Again, its so good to see you posting and I'm glad you are back! Please let us know when the good news comes (and you know it will) about Mark's job! and Rob 16 Spondy (JAS) On Thu, 5 Jan 2006 13:26:41 EST ThreeMayEmeralds@... writes: Hi : Thank you:) You said it.....I am praying that 2006 will be a better year! We are still waiting on Mark's clearance to start his new job. Since September 11, it takes that much longer. We are now in the 7th month of waiting. The idea of the jar and nice messages is definitely one I am going to do:) How's life your way? How is Rob doing? How about you.....feeling okay? Take care. Patty Quote Link to comment Share on other sites More sharing options...
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