Guest guest Posted June 19, 2000 Report Share Posted June 19, 2000 Thanks Dale and Kay: I hope all is well, and one hard lesson learned. Belief in Him is always the key through tough times... Annette and Alissa >From: dalemweath@... >Reply-To: PedPIDegroups >To: PedPIDegroups >Subject: Hi from Dale >Date: Sun, 18 Jun 2000 19:18:18 EDT > >Annette! That's the best news!!!!! I'm been so worried about you both! >I know I would be in the looney bin if anyone took my child. Best wishes >for all your future years together! Congrats on the life support degree. > And welcome back -- I've really missed you! > >In His service, >Dale ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2000 Report Share Posted June 19, 2000 Beth, I am still praying for you, especially for Wade. I have asked my church to pray for you as well. They have been vigilant in praying for Kody, that we will find answers and that he will be well. They were absolutely astounded when I mentioned that this can and does happen and they prayed for your family right then and there. I can only imagine how hard this is for you. My heart went out to your husband this Father's Day. I have confidence that you will get your " sonshine " back soon. How is he doing with all this? I am so glad you are allowed at least some visitation now. Poor pumpkin. How is his health? I pray that he stays healthy throughout all this without you there to take care of him and give him that Mommy lovin'. But remember that he isn't alone, Jesus is ALWAYS with him. Take care, Beth, and keep us posted, we'll keep praying! Diane. Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Hi Dale, It was nice meeting you. I appreciate the offer to stay in your home when we come for IVIG. We have been coming for four years every three weeks and last week was the first time we were unable to stay at the RMH. The RMH is s home away from home. Staying there has helped him prepare himself mentaly for his IV. But I do have your # if a room is not available. Please thank your family for being so open to having us. This last time came back and was completly overwhelmed by missing school. Not feeling well, and a big test the next day. His teacher is very understanding but keeps alot in. I am meeting with our ped to see if things have changed at our local hospital. See if we can get two months done at our local hospital and the third down at Stanford. That way we would only be traviling down every 9 weeks. We looked into this last year and they discouraged us. We will see if things have changed Thanks again for taking the time to see us. It was nice putting a face to the e mail. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 I called the hospital this morning to ask who I could discuss the situation with. They referred me to someone in administration. When he called me back, we had a nice discussion about the situation and he completely apologized for our inconvenience. He explained that their practice was to ask patients with morning appts. to sign in 2 hrs. in advance and he could not explain why we were told to be there only 15 min. early. He assured me he would take care of the oversight with the staff and asked me to consider coming back to the hospital again if the need arose. I definitely feel better talking to someone about the situation and probably won't be quite so stern with the dr. about the situation. I definitely will keep him informed of what happened because I believe he deserves to know. Incidentally, this hospital is in Odessa and we live in Midland. The rivalry between these two towns is extremely intense. Thus, cross-referrals in the medical community are rare, except in specific cases. The administrator agreed to make a courtesy call to our ped. to explain their hospital procedures for referrals to prevent any further miscommunications. Ahh, the benefits of collaboration--sometimes it doesn't seem worth it, but I guess we just have to keep working it. Ray, mother to Tabitha (age 5) and Autumn, almost 3 (IgG def., asthma, chronic sinusitis, allergies--unknown, and GERD?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Dale- Thanks for the welcome. Those of you with pumpkins with ports, how long is the surgery? Was there much pain afterwards? How long were they out of sorts? I know eac child is different. And is having a Bone marrow biopsy too. Just wondering. Thanks dalemweath@... wrote: from Dale, Mom to Katy, CVID, age 16 Welcome back . I'm sorry it's been such a rough year. I'm praying that the IVIG will successfully stop these infections and give some quality of life. Remember that you will not see immediate results -- but over the next few months you should see less infections. Again I suggest that you write down all of your concerns about right now, then put them away and review them only once or twice a year. That's the best way to guage your progress. We get so busy with the day in and day out hassles, it's hard to see improvement because we just adjust to wherever we are. Katy's doctor is back in town -- YEAH! Isn't it amazing how that takes a weight off the Moms! We're going to give these nasties another few days (until her period is under control) then start more stool studies. There's definitely something going on! Beth, I'm praying for Wade. Sorry he's had such a rough weekend. Glad you've got a pediatrician who knows what he's doing! I know a lot of our pumpkins are struggling with nasties, I'm praying that God will give you Moms and Dads special strength to cope. In His service, Dale eGroups Sponsor 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. , Mom to: Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe neutropenia, leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman Syndrome) --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Thank you Dale. Just to make sure I have this right...Katy does get a flu shot, right? Has she ever had any adverse reactions to it? Thanks, Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 from Dale, Mom to Katy, 16 CVID I'm trying to catch up on e-mail since I've been out of town for 2 weeks. Just saw 's question about aching joints. Katy had a lot of problems with aching joints especially around her ankles and knees -- but also her hips and occasionally her wrists. The only thing I can relate it to is low IgG because after being on IgG for about a year, it went away. She said it felt very similar to a sprain. And wrapping the area in an ace bandage and applying heat helped. She felt that the pain was closer to tendonitis than arthritis -- not actually in the joint, but around the joint where the muscle connects. She hasn't complained of that in a long time. Hope that helps, I think I'm almost caught up here. Trying to get moved back into my new almost completed kitchen. The " two week " project is now moving into the 9th week! I'm so ready to be done with the plaster dust!!!! Our trip to my parents in Arkansas was uneventful, but COLD! Katy is trying to recuperate from travel fatigue. In His service, Dale Quote Link to comment Share on other sites More sharing options...
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