Saturday, July 24, 2010

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This will be quick because I don't have a whole lot to talk about, and my sister has my camera this weekend so I don't have any new photos to fill up blog space. BUT...

We've had an okay day. Jonah's been fussy and a little frustrating, but I guess that's in typical not-quite-toddler fashion. We got up and did dressing change, fed Jonah, and then headed up to Stone Mountain to visit with my Maw-Maw and Paw-Paw. My brother and his kids and my dad were all going to be up there today, and I have been wanting to take Jonah for a while, so it was a great time. We had a nice lunch and got to hang out a little, but we had to stay inside while the kids went on golf cart rides and to the playground, so we missed out on some good family time. Meanwhile, back at Maw-Maw's cabin, Jonah was fussy, clingy, and an all around a pain-in-the-patooty. So we cut it short and headed back home. He was overly tired because he had only slept 45 minutes on the car ride up there, and he's always pretty ornery in a new place.

Peyton and his kids (ages five and three) came into town on Thursday night, though, so I had gotten to spend some quality time with them before today. Peyton came yesterday morning, while my mom took the kids to the park and library, and helped with dressing change. Then I went over to my mom's for a late lunch on Friday and hung out with them and the kids. Last night, Matt and Peyton kept Jonah and played a couple games of chess (Matt is a very good chess player, and he says that Peyton is a smart player and good considering he hasn't played that much) while Mom and I took the kids to see a local performance of Peter Pan the Musical. It was fun, and although the kids were a little restless at the beginning, they really liked it (it was three hours long - they did GREAT!).

That's about it for our weekend so far. We hope to make it to church tomorrow, but don't have any big plans. It is still SO HOT here, and I'm praying for relief soon. I'm fairly certain it got to 100 degrees here today, and you'd think it would have been cooler up in the mountains. You would be incorrect. And the humidity is just so bad. You just feel damp and sticky as soon as you walk out the door. Gross. And impossible for Jonah.

Please say some extra prayers for Daylon and Bella tonight. Daylon's had some bleeding on the brain and a seizure from a trial medicine he's having to take to prevent a potentially fatal condition (VOD) from getting worse that has resulted from Transplant. So far, they've been able to avoid surgery (which would hold GREAT infection risk for him) and have stopped the medicine and increased his platelets in hopes to thicken his blood. Bella is on the same medicine for the same condition. Both of them are on continuous dialysis because their kidneys aren't functioning, which thins the blood further. VOD is potentially fatal. Kidney failure is potentially fatal. Stroking from this medicine is potentially fatal. Nothing about this transplant is easy. Please be in prayer for both of them. As always, many thanks for the prayers, love, and support for all the EB Sweeties.


trooppetrie said...

praying for them. i am within a hour of you and it definitly hit 100. way too hot for me.

Lucy and Ethel said...

You're right - it was H.O.T. in the mountains yesterday and today!!!

Praying for the EB babies....


PS - What part of Stone Mountain did you visit?

RLR said...

We were hoping to go to Peter Pan on Thursday, but it just didn't work out. I'm kind of surprised it was 3 hours long, so maybe it was best we ended up staying home.

And - hot is right! We went to a baseball game tonight - whew! If I hadn't bought the tickets weeks ago, well, we might have changed tonight's plans, too!

Praying for Daylon and Bella!

Linda said...

Hi Patrice: Just checking in to see how your precious Jonah has been doing. So glad that everything seems to be going so well for you guys. You are truly blessed.
Prayers are already going out for Bella and Daylon. These kids sure could use a big break right about now. I HATE EB so much.
Take care. Love you guys. Love Leah's Nana