Week of 5-17-10

This week has flown by! While our yard is developing it's jungle tendencies, both Brisan and Parker have had issues this week with mucas and drainage. They were coughing like they where standing on jack hammers every morning. Many of you know that for Brisan this is always an issue because of that life long sinus infection he has! I sure hope we can figure out these polyps in his nasal cavities.

On Tuesday Duncan had somehow hurt his knee so Jenn was instructed to take him into the ER. He seems fine now and maybe just accidentally bumped it pretty good.I think it might be a case of being a “boy”.

Starting this week through a program called Carousel which is palliative care for serious ill children, we have a registered nurse that comes a total of four hours a week. That will be nice to have because if something is pretty urgent then they can come over anytime we need them. We also have a social worker that also will come by. Also let's not forget the dietitian every few weeks to check on our needs if any at that time. Brisan and Parker will also get music therapy every few weeks too! That should be fun for them!   I laugh because if you turn on MTV or something like that…they all just kinda of stair!

Oh yeah…the van overheated pretty good. Looks like the head gasket needs to be replaced. 🙁

This weekend there is a softball tourney called “Battin' for Batten Disease” First Annual Softball Tournament. It is a very similar disease as Niemann-Pick Type C but strikes very quickly. We have a friend who's daughter is affected and not doing well who arranged this. Doesn't matter who you are….arranging fundraiser's isn't for the faint of heart!

Thank you to everyone for keeping us in your prayers. It is truly your caring and support that helps us because we know I'm not superman and Jennifer isn't superwoman!

  • Janelle

    Have a great time at the softball tournament!! It is great that you are goign to do that!! I had never heard of Batten Disease. I miss you guys and hope you are doing well…my prayers are with you on a daily basis! Much love!

  • Thanks! I won’t be playing…probably just will be an Ump! lol I have a pinched nerve in my elbow anyways! Batten’s Disease is under the family of Lysosomal Storage Disease’s like Niemann-Pick Type C. Thank you for all the prayers! We super appreciate it! By the way…Starbucks called and asked if you’d move back to KC.

  • Darla Sartain

    Hope the boys get better. Always hard to see our children sick. Prayers for the family

  • Thanks Darla! We overwhelmingly appreciate! 🙂 Never fun for the little ones who have to endure such challenges so early in life.

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