Updat on Joel

Bout time I wrote in here, and now that it has been awhile, I think I best do an update before I go on to write other blogs about other things.

First of all: I had an AWESOME visit with my new found friend, Jolene! It was truly amazing and a huge blessing to add her to my growing list of friends. This is an ongoing answer to my prayers. When Steve and I first moved back here from up north, I learned that I was basically starting over, as most of my friends from before had moved on in one way or another. Then when Joel came along, it put a whole new spin on things. But through one thing and another, God has slowly been bringing some very special and terrific people into my life to love and support me. This is something that awes me, humbles me, and fills my heart with gratitude.

My in-laws were here for a week long visit. I blame this for my recent inattention to my blog. It was nice to see them, and to see them enjoying their grandchildren. I wish they could see them more, but it's a four hour flight away from us.

And as to Joel, the last week or two has not been quite as great. He has developed something similar to sties in his eyes, but not. They are called chalazions. They are blocked oil glands in the eyelid, unlike sties, they are not infected, just blocked. They look absolutely horrendous. There goes the photo shoots. It sort of bums me out, particularly as they can apparently take weeks to go away on their own.

Also, by asking my online support group, I learned that there are several other PBD kids who've had them. It's nice to know we are not alone, but it always makes it more complicated when what I thought was just a "fluke" turns out to perhaps be related to Joel's condition. Because that takes it to a whole new level and often means that resolving it is not as easy as for healthy kids. I am grateful that it is NOT something that requires hospitalization, but I am bummed out at another sign of the PBD popping out in such an ugly fashion. So I continue to monitor it.

And he has a hugely swollen gum where a tooth is pushing through. The other two teeth seem to be coming out on the other side with only moderate swelling. This other one seems like it is worse, and might be causing some discomfort. Joel has been a bit more irritable the last couple weeks. Also, I've not been able to keep him on his CPAP all night long. He keeps waking up half way through the night and I need to remove it. After a few days of this, he is more tired in the day time. I don't know if this is a sign that the water behind his ear drums has not resolved, or if it's the teething or what. But I'm hoping I can get him back on CPAP all night, every night, again soon.

The good news is, much to my amazement, Children's Wish Foundation is going to try their best to get us our jacuzzi tub! They will send someone over soon to check over the plumbing and other technical aspects to make sure that it is possible, but they are willing to do it! So excited about that! It would really be amazing to hop in the tub with Joel every night and just get him relaxed and clean. Whoooo hoooo!

Ok, that is the update for now. I'll write more as I am able.