Thursday, October 15, 2009

answers, part 1

I'm only going to answer a few questions tonight because I'm very tired (and also trying to watch my stories).

What would be my favorite date night with Matt if I were completely worry free on the Jonah front?
Um... that's a hard one. I really like activities where you can actually talk and hang out rather than a movie or something like that where you don't speak for two hours. Matt is a movie lover though, so he would choose that. I, on the other hand, would like dinner (Longhorn, Chili's, and Logan's are my favorites) out and some sort of activity like bowling or putt-putt. If it were a day date, I would want to do something outdoorsy like a picnic or driving up on The Blue Ridge Parkway... oh, how about a picnic ON The Blue Ridge Parkway.

Is there a possibility that Jonah could have a Bone Marrow Transplant like Sam?
While they have opened up the transplants to Junctional patients (Sam, as well as the other six EB BMT patients, have RDEB), it would be a last resort (at this point). Bone Marrow Transplants are very dangerous in the first place, but for EB patients they are even more dangerous. The chemo drugs are extremely rough on skin in general, so you can imagine what they do to EB skin. And they destroy your immune system. Basically, they have to take you within an inch of death without killing you. It's pretty scary. AND Jonah doesn't have an exact sibling match like the other patients have had. That would greatly increase his chances of rejecting the transplant. We are hoping for major advancements. Maybe by the time he's four or five, it'll be a different story.

How will walking affect his feet?
I don't really know, but judging by how bad his feet are now, I can't imagine it's going to be pretty. That's one of those "cross that bridge when you come to it" sort of things where we'll just have to wait and see. My guess is it involves some very skillful bandaging and wide shoes. I will be consulting other EB parents to know how exactly to bandage his feet to where they're still functional and to know what kind of shoes are best.

Ok, that's it for now.

8 comments:

lifelaughsandlove said...

I love the Blue Ridge Parkway...especially this time of year. I live in WI, but I went to college in VA and spent a great deal of time on the Blue Ridge Parkway with my best friend. This time of year we would just go for drives to enjoy the fall colors, go back to our dorm, drink hot chocolate, and carve pumpkins. As you can tell, you got me feeling all nostalgic :)

~Amy

Lucy and Ethel said...

We are just under 5 miles from the Parkway :)

Any time....

Lucy

Pam :-) said...

I just wanted to let you know how much I admire you!!
Your family is always in our prayers.
Jonah is blessed to have you as parents.

Lorraine-bo said...

I've been away for a couple of days ... I had lots to catch up on!

I don't know that I would have thought of a question, but I'm enjoying your answers to what other people have thought to ask you. I grew up in FL and the first time I saw mountains or snow was on a vacation to the NC part of the Blue Ridge Parkway when I was 17. Then I went to college at Liberty U. which is not too far a drive from the Blue Ridge in VA. One of my favorite parts of God's creation in that area!

So ... after you told us that you & Matt have decided to awaken Jonah once a night (or rather the wee small hours of the morning) to eat ... I had the visual of the old Dunkin' Donuts commercials with "Sam" ... and just thought of you and/or Matt getting up at three in the morning saying in that sleepy, unamused voice: "Time to wake the Jonut"

I probably cracked myself up more than anyone else with that LOL! Anyway ... praying that the radio time blesses you and others! :)

Anonymous said...

i love that you call it "my stories". i had never heard that before until my husband said it to me once when i was ignoring him to watch a show. He told me he'd leave me to "my stories". Funny, i thought he made it up... but clearly not!
hope you, Matt and Jonah enjoy your weekend. We live in PA and are expecting snow this whole weekend! YUCK!
God Bless!
~Heather

chinamoon1420 said...

I had no idea there was embryo adoption. What a wonderful thing for parents who have some genes that can come out and rear their ugly head but would love to have more children. I have the hemophilia gene somewhere in my family. I would love to have more children but my son's first year was so traumatic that I feel that I just couldn't take that risk and put another biological child through that. Many people do choose to have more children and that is great. I am not knocking it at all but it is so great that there is that choice of embryo adoption so you can be pregnant and all that wonderful stuff! I love being pregnant. I have often thought of adoption in the future too. I just feel God is calling me to do that. Thank you for opening my eyes to something new! You do that all the time you know! You have answered a lot of questions that I have often wondered about with sweet little Jonah.

Prayers to all of you!

William, Megan and Avery said...

I'll start with the side note: a good friend of mine just gave birth to a precious baby girl born from embryo adoption! They tried to foster/adopt and had a horrible experience, and God has truly blessed them with their Addie.

The walking thing is what caught my eye in your post- I'm an early intervention PT and saw a little girl last year with EB (not sure what type- I had no idea what it was when I started seeing her), and this is what we did: bandaged her feet using a ton of gauze wrap, then put on super-padded AFO's (ankle-foot orthoses which helped keep her range of motion good) and we actually put rubber on the bottoms of the AFO's so they acted as her shoes! It was fantastic because we avoided all the friction of having to grab her ankle and wiggle it into a shoe!

Praying for you!
Megan

Melissa said...

I think you and I were cut from the same cloth! Movies are not my fave date, either, for the same "non-communication" reason. I feel the same way about going out with another couple. I want to have face time with them and build on the relationship. I hope that you and Matt get an opportunity for a long date sometime in the future.

Thanks for sharing so much interesting info on Jonah. I just love, love, love the pics you post. He's soooo beautiful.
Still praying with love, Melissa