Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Dawn - We've never signed with Macey because we didn't think it was necessary. Not to say it hasn't been frustrating at times and now being almost 9 she still has very much a baby-talk type of vocabulary and it's difficult for us to understand her sometimes. Also she has problems at times remembering to swallow her saliva. Just seems to pool there. Macey is infused at the hospital every 3 weeks. The premeds take about an hour, the infusion takes 4 then we go home. So our nursing care is done there. We get nursing care if there are home IV meds but that hasn't been needed in about 3 years. Ursula Holleman mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
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