Tag: MPS I

MPS Awareness Day

  May 15th is MPS Awareness Day.  For those of you who have never heard of this disease, you can read more by clicking on this link. I became aware of this disease last summer.  A lady I was in a Bible… Read More

a confession, and other random junk

I think I”ll save the confession for last. So, my Pampered Chef business is about to get started!  My kick off party is on Tuesday evening, and I have a small, yet respectable, amount of people coming.  I tried out the reciepe… Read More

hannah’s visitation

Yesterday I mentioned that I was going to be attending the visitation for Hannah, the little 17 month old baby who died from complications of MPS I.  I went with 3 other ladies who were in the Bible study with me when… Read More

the email i dreaded all day…

All day long I have been checking my email, praying that I wouldn’t get an update email about Hannah because I knew it would be to say that she had gone to be with Jesus.  At the same time, I was clinging… Read More

my heart is breaking…

So, the little girl I’ve written updates on periodically… I got a little while ago what is probably her last update.  Her parents both wrote a note explaining that the doctors don’t know what else to do for Hannah.  She is too… Read More

update on baby Hannah

Well, the one-year old baby I’ve written about a couple of times with MPS I  is not doing well again… but this time, it’s really bad.  She’s been through bacterial infections, fungal infections, ventilators, bed sores, feeding tubes, x-rays, and every other form… Read More

I still don’t understand…

So, a while back, I wrote about a little girl who is suffering from MPS I.  (under: sometimes it’s hard to understand).  Today we got an urgent update notification that said she was not doing well at all.  She’s been in the… Read More

I take back a little bit of it…

After re-reading and thinking further about my facebook commentary from earlier in the day, I’ve decided that maybe I was being a little harsh/emotional.  Not uncommon for me… I do have the unfortunate habit of acting before thinking, and that entry is… Read More