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Catch Up…

May 11, 2010

That is what I have been doing most of the day since I took the weekend off…o.k., more like took a mini vacation from doing any house work.  Oh well, it was fun while it lasted. 

I will also attempt to try and catch you up on some of the medical things that have been going on around here…

Lucy is recovering from her drop in glucose; however, she has been sleeping A LOT (20+ hr/day) since that happened over a week ago.   Other than her excessive sleepiness, she appears to have maintained all of her skills, thank God!  I was able to order her some new extension sets, but they have not been shipped yet, something to do with insurance…ugh.  In the meantime we have been taping the heck out of her tube so as not to have another experience like the one we had.  I spoke with a company that sells bedwetting alarms and described our situation, we are going to look into a clip on sensor as opposed to a bed pad.  Apparently the bed pads are extremely sensitive and will alarm if a child is an excessive  sweater, AKA Lucy.  That is the last thing we need, an alarm to alert me to when she is sweating.   Recently, when Lucy has woken in the night, I  have seen her trying to disconnect her feeding set from her extension set.  She doesn’t quite have the hand strength to do it herself, but I wouldn’t underestimate her!  She often “asks” me to disconnect her when she has had enough, she’ll hold her tube in her hands and cry.  Perhaps this is what she did that night?  We have noticed that her tube is backing up with bile more frequently, indicating that her digestion is slower.  Maybe she is experiencing more discomfort than usual and she took matters into her own hands, who knows?  As always with Lucy, some days are better than others.      

As for appointments we have had our fair share of them recently.  We met with Lucy’s endocrinologist for the first time since her growth hormone studies last June.  At that time we were all waiting to get back the results of Lucy’s muscle biopsy before moving forward with trying to figure out the cause of her hypoglycemia.  Now that we know that we are dealing with mito her endo. believes that we no longer need to pin point a cause for her hypoglycemia because he feels that her issues are related to her mitochondrial disease.  For now we continue doing what we have been for almost a year,  22 hour/day continuous feeds!  We had an appointment with Lucy’s neurologist recently and overall she is pleased to see how Lucy is doing.  She briefly evaluated her gait and agreed that we should see ortho about her hips, we are scheduled to see them on the 25th of the month.  We also agreed that the time has come to do a sleep study,  we are probably looking at doing this sometime this summer.    We had an appointment with Dr. R at DuPont who has agreed to manage all of Lucy’s mito needs.  We are currently in the process of having him listed as her PCP for Medicaid.  We are optimistic that this will happen soon! 

Appointments, appointments, and more appointments are in our future. We are scheduled to see genetics, a new GI specialist who has experience with mito, orthopedics, an augmentative communication specialist, nutrition, and Dr, R again all in the next few weeks.  I will write more about these when we have them.  We want to get all of these appointments done before the kids are off for the summer, so that we can just enjoy spending time together as a family.

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