Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 from Dale, Mom to Katy, CVID, age 20 Boy the group has been quiet lately. Katy goes in tomorrow for her first Gamunex infusion. She's going into the hospital's infusion center (and wants to go alone). My how they grow up!!! Just wondering how everyone else in the group is doing. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 <<<<<<< Katy goes in tomorrow for her > first Gamunex infusion. She's going into the hospital's infusion center > (and wants to go alone). My how they grow up!!! > > Just wondering how everyone else in the group is doing. > In His service, > Dale EEEEKKKK!! Hope everything goes well! My middle child, my 11yo son, will be going off for a week with the boy scouts on Sunday. This is the longest he will be away from me and I am compulsing already ..... I KNOW it's much, much harder on me than him! Sandy (Mom to Riley, age 13, selective antibody deficiency, IVIG, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 from Dale, Mom to Katy, CVID, age 20 Oh, no! He hasn't even left yet!!!! We get so wrapped up in their minute to minute care. But really, remember that you both need that break. So -- party!!!!! The first time Katy went away after she became ill was really, really hard. I had arranged my schedule so that I could paint a bedroom that week. I worked really, really hard so that I wouldn't lay awake at night. As it turned out -- I treasured that time. It gave me a lot of time to pray, yet my hands were busy -- so I didn't fret. I turned on " my " kind of music (not hers) and just worshiped and painted. It was a great week and I was very refreshed when she returned. There were several week-long camps after that that her adventure only lasted a day or two -- so I learned to do the things that I REALLY wanted to do the first day that she left so that if she had to return home -- I wouldn't feel deprived! I'm praying that it will be a very positive experience for BOTH of you! In His service, Dale >My middle child, my 11yo son, will be going off for a week with the >boy scouts on Sunday. This is the longest he will be away from me and >I am compulsing already ..... I KNOW it's much, much harder on me than >him! > >Sandy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 from Dale, Mom to Katy, CVID, age 20 Hope the sub-q goes well. Please let me know. Macey seems a little small -- hope she has enough " fat " to absorb it without pain. Katy's really considering it. She just called from the hospital and said that they had blown the first stick and she wanted to rest a minute before they tried #2. But she sounded like she was handling things fine. Ursula Holleman wrote: >We go to Egleston in Atlanta tomorrow for her first subq infusion. Using >Gamunex. Please say a prayer that this will be a great new option for her. > > > I KNOW it will be a great option if she can just stand the getting used to it. No more nurses, no more infusion dates that ruin the day. I wish it had been an option for us when Katy was that age so she could have just grown up with it and accepted it as the norm. Let us know how it went and please go into detail -- like -- how much did they infuse at one time? How often does she have to infuse? etc. You know -- the REAL details. I'm praying for you both right now! In His service, Dale Quote Link to comment Share on other sites More sharing options...
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