Lucas's Web Site

Welcome to Lucas's Web Page. We will use this web page to update friends, loved ones, etc on his progress fighting Metachromatic Leukodystrophy. Please check in regularly for updates. And, please feel free to leave your own notes for him!

Journal

Sunday, June 14, 2009 8:26 PM CDT

THANK YOU FOR CHECKING IN ON LUCAS!

Lucas has been going to school everyday for some time now. Unfortunately, just about everyday we bring him home he has a BM. He seems to have one each day around noon, as is the case on the weekends, but it's the only time we can take him to school and we do our best to get him home and changed ASAP. He still has days with 6-8 BMs and they still don't know what's causing it. We changed the timing and amounts of his feedings, we've added some ProBiotic drops and nothing seems to be changing how much he goes. His GVHD has been flaring up and we've added an extra shower and started shampooing him in bed. We use olive oil on his head and are constantly creaming him to stay on top of it.

Since we stopped giving Lucas Bactrim, we've been going to CHOP every 4 weeks for his Pentamadine IV. One of the idea's they are considering is to do another endoscopy with Lucas as they are not sure if the one he had back in March went deep enough. That's on the table right now. We're again looking into different feeds for Lucas and trying to figure out what he can tolerant or what may even slow down the BM's. He's not getting dehydrated and we haven't had to catherize him in several weeks. It's a real battle keeping his butt smooth and comfortable from the excessive BM's and the fact that he has to wait to be changed until we get him home.

Lucas has been gradually getting tired earlier and earlier in the evenings. He fights to stay awake and watch TV. We try to settle him down around 8:30 with Xanax and he fights it. We still have nursing 7 days a week for 8 hours, but that is up for renewal shortly and we're hoping to keep it going. He has on and off days with pain from us moving him, but we don't think he's had any more breaks. With this time of year being not so hot, we've been taking rides to the farmers market with the nurse and taking him to the boardwalk for some fresh air. We can't take him on the wooden boardwalk as that's too bouncy and he can't take the vibration, but a good part of the Long Branch boardwalk is large granite stones and it's much smoother. We sit in our garage watching videos on an old TV and VCR. He can manage about 2 hours max out there as long as it's not hot. We were given an Elvis Pressley CD, Lucas loves Elvis from Lilo and Stitch and he'll enjoy several songs. We try to get him out of his room and are taking advantage of the not so hot weather, but we know any day now he'll be stuck in the house for the next few months.

Lucas wraps up school this Friday and will be home for 2 weeks. Abby also finishes this Friday. She's finishing 6th grade and also had her dance recital today at Monmouth Univ. She had 6 dances, with 1 solo in honor of Lucas. She made a short speech and dedicated the dance to Lucas and The Stennis Foundation. Mom said she danced beautifully today. We're planning to attend the MLD conference in King of Prussia, outside Philly. Mom and Abby are going for the whole time, and Dad is coming out with Lucas Friday and then going home that night. God Bless!

Hospital Information:

HOME
63 Silverton Avenue
Little Silver, NJ 07739
732-741-3181

Links:

E-mail Author: abbylukev@aol.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.