Incredibly, 2009 is about to end.
I don't even remember most of 2009, but I'm ready to roll over the calendar.
Some folks are pondering the year's events and summing up the past 365 days, but I'm skipping that in favor of a final request for a few prayers:
For 'our' Kevin, that his fever go down and STAY down and that he regain some energy without having to return to the hospital. And for Ethel, that she is somehow able to get some sleep.
* * * * *
For
MJ and Brenda, who have been in the hospital so long, they may be on the payroll by now. MJ is celebrating two birthdays this month - her angel sister Emma's 21st birthday on the 3rd, and her own (#22!) on the 8th. It's likely a sure thing that MJ will still be stuck in the hospital on her birthday, so please consider getting the new year off on the right foot and send birthday cards to her!!! This would make a TERRIFIC church and/or school and/or community and/or snow day project :)
To send cards:
Easy
eCard instructions -
1. Go
here to create a card
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5121
That’s it - do as many as you can, and please pass the info on however you can!
NOTE: The cards are printed each weekday morning around 9-9:30. Any that haven't been received by then will be printed on the next 'print' day.
If you prefer,
real cards can be mailed to:
Nationwide Children's Main Campus
c/o MJ Purk, Room T5121
700 Children's Drive
Columbus, OH 43205
* * * * *
For the
SMA researchers, that they find the missing links (including the necessary funding) that we in the SMA family need in order to squelch the devastation of SMA. They are SO CLOSE!!!
Finding a cure for SMA will also help 600 other diseases. If you haven't yet signed the
Petition to Cure SMA, please make it one of the things you do to ring in the new year :)
* * * * *
For
Jonah and his mama, Patrice (and dad, Matt). Jonah's doing fine at the moment, but the
EB family
lost a beautiful little gal,
Leah, this morning. She'd had surgery yesterday to place a g-tube and to remove her teeth, which spell disaster for EB babies, and her mom posted that things had gone great. Patrice didn't know what happened but is understandably crushed.
Of course, prayers go to Leah's family (her parents are Meg and Jeff), but they are also needed by other families dealing with EB. Like Jonah and his mama, Patrice.
Ironically (or not), here is Patrice's
post from the night before Leah's surgery:
UPDATE: Leah is in recovery and did well during surgery. I'll update more when I know. That's all I've got right now.
I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.
We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.
And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.
Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.
Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.
I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.
Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can.
While you're at it, please add some prayers for
Tripp and his folks, Courtney and Randy, who no doubt heard about Leah earlier today.
* * * * *
For those in charge of making decisions regarding the country, that someone(s) with some sense be given an opportunity to USE it.
* * * * *
For all of you, for a happy, healthy, safe, and successful 2010. Thank you so much for hopping around or into the Suite. With one of us absolutely needing to shed some lard this year, there will be even more room for M&Ms. I mean, Suitemates.
Happy 2010!
Lucy
