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 study with had a granddaughter undergoing testing, but the doctors were not sure …

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 I’m going to make… it’s so good… mmmm…  I am a little nervous …

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 we were introduced to Hannah’s grandmother.  I’m really glad that we went together. …

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 to the hope that maybe, just maybe, there had been a miraculous turnaround, …

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 sick, there are too many things wrong with her, and the medicines that …

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 of invasive procedure I’ve heard of.  And it still amazes me that she …

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 PICU (pediatric intensive care unit), and has been doing fairly well considering what …

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 evidence of that.  Not that I don’t still feel the same, but I …