Wednesday, May 13, 2009

answers, part 5

Are we sure Gabe had EB? Was he tested or is this just a guess?
The photos of Gabe on this blog are touched up. His skin was like Jonah's - his hands were completely raw, and the skin was sloughing off in other areas. We were told at the time that this was just because he had died in utero. We had an autopsy done and genetic testing, and both revealed nothing. However, to find EB, they would have to have done special skin biopsies to test specifically for it. Obviously those were not done because we had no idea. We know now that it was much more than just skin slippage from having died. It was more severe than that, and the autopsy came back saying he had been dead at least 72 hours. He had only been dead 36-40 hours at the most.

Does EB get less intense with age? If so, why?
Again, I'd have to defer to the experts. I know Simplex tends to get better with age. I'm not really sure, unless it has something to do with the skin becoming "accustomed" to more... similar to working through a callus stage when learning to play the guitar??? Junctional, on the other hand, is much more severe, so I don't have any idea what the outlook is for Jonah. I have been told by Adrienne (the mom who has the 3-year-old JEB daughter) that his skin will toughen up some, and he'll be able to handle more. But I also know that all EB cases are different, so there's really no way to know except to wait and see how Jonah presents.

Do I like The Office? Which character is my favorite?
I like The Office very much, although I haven't watched any recent episodes. I'm going to have to catch up online, so don't say anything. My favorite character is Jim. His facial expressions are hilarious, and half the time I'm cracking up, and he hasn't even said anything. My favorite episode ever is the one where Dwight is telling all the stuff Jim has done to him like weighing down his phone with nickles over time, and then taking all the weight out, so Dwight would smack himself in the head. That episode is hilarious.

Have you ever considered writing a children's book about EB?
I've always wanted to write Children's books in English and Spanish and have my brother illustrate them. I'd still like to do this. I hadn't really considered writing one about EB, but it's a good idea.

Matt and I started dressing change at 5:50 tonight. We were done by 6:49, but then Jonah spit up all over himself, and we had to redo one of his arms and his torso. So then we were done by 7:13. We still gave him the Morphine and Ativan at pretty normal times, but just started dressing change early. He was pretty happy through all of it, and definitely not in any pain, so that was very encouraging. And guess what I'm doing now? Watching the Lost season finale. Relaxing. Having a "normal" night. Jonah has been asleep since about 7:30, so he's apparently not caught on to the new schedule yet, and will probably have us up all night. Oh well. Once he gets into the new groove, I think we're going to love the new way of doing it. And that way whoever is with me during the day can just stay and help with dressing change rather than us having to find a second person for the evenings. I think it will be better for everyone, including Jonah.

No creative ideas or funny jokes tonight. Just glad to be sitting on my sofa watching television. More tomorrow.

29 comments:

brightleigh said...

It's really the small things that count, huh? I like the idea of you doing children's books. You have a knack for words and that could be a good "stay-at-home" mom thing to do. You could even sell your books at Target. ;-) Continue to love on that precious baby of yours and hug Matt for us. We continue to pray for you all!

Much Love,
Leigh
Leigh

RLR said...

Glad the dressing change went well and that, even with the spitup and re-wrapping, you are getting some time to relax.
Give some thought to that children's book. I think you'd be great at it, and it could help lots of kids without EB understand kids who do (and help them understand what they can do to keep Jonah safe). I know I'll be leaning on all the resources I can to help folks understand my daughter's food allergies when she begins public school - including children's books to help her classmates understand.

Lindzerelli said...

I love LOST! Who is your favorite character? Are you confused by the flashbacks? (I am!)Kate with Sawyer or Kate with Jack? Are you sad when there is a season finale? Do you watch the recap episodes or skip them.

I love The Office too. My favorite episode is where Jim comes in dressed like Dwight and talks like him. I could watch that one over and over.

I'm glad the dressing change went well and I hope Jonah adjusts to his new schedule soon!

Sara said...

I'm sure you already have seen this or know of what's added here but wanted to leave this link that's been helpful to me to understand what sweet Jonah is going through.

http://garrettshouse.org/

I love the answers. I have one myself.

How are you my dear? This first year, of being a mommy, is such a hard change. Losing everything of your non mommy self and trading it for a world that revolves around a baby is hard under normal circumstances. How are you doing sweet heart?

hellomorleen said...

I know you've had a lot of help from family/friends since Jonah was born. Do you require extra hands during the day or more so just during dressing changes in the evenings?

Sara said...

http://www.garrettshouse.org/developmental.html

Interesting ideas there about breast pads for knee and butt padding when mobile.

Kelsey said...

I am so glad that you are having somewhat of a normal relaxing night! I love reading your posts, you are so funny! My husband and I just think your little Jonah is the sweetest thing (besides our own two kids of course!).

mrs. mari said...

i can only imagine you could write a wonderful book whether it be for children or adults. i enjoy your blog and your sharing jonah with your readers.

keeping you all in my prayers.

amandaslade said...

I'm not sure I've ever commented, but I thought this was sweet so I wanted to tell you. I know a nurse who works with babies at Chapel Hill (I live in Burlington, near Greensboro) and so I asked her if she had heard about Jonah or worked with him. She hadn't, but I thought it would have been cool because I kinda think of you guys as "blog famous" :).

As I was explaining what EB was (as much as I could remember) the lady's 10 year old daughter heard me. And so she decided she wanted to invent things to make life easier for kids with EB. She had all kinds of ideas on how they could walk without getting blisters etc... It was really sweet. She really wanted to help and was really concerned.

Who knows maybe she will invent something someday? But Jonah's story is inspiring people! Thanks for continuing to share! I am praying for you.

Laura A said...

I'm so glad the dressing change went well! Am also glad you're getting to relax and watch "Lost."

Continuing to pray - please let me know if there's anything else I can do/send!

Love,
TX Laura

jennifer said...

oh. finally. jacob. we're watching, too. only the idea of getting the kids to bed before it began was a fantasy around here.

i started to say before - i really appreciate your q & a. growing up all i ever knew of was eb. no jeb or deb or simplex or all the subs. when my parents adopted my brother at 3 months they had no idea what to expect, how long he would be with us. they met once with specialists in st. louis when he was a toddler. all i remember was him coming home with a new tonka truck. he says it was to for biopsy and further research.

otherwise. it just was. just is. then along came jonah in this age of blogging. thank you for being so open. my brother and i have had really good chats about some of the things you've written. most esp as we look down the road towards future nieces and nephews.

much love. or. namaste.

dragonflyz in June said...

I am so happy that you guys are starting to find some normal to your life. Jonah will get onto a sleeping schedule, don't you worry. My Jonah is just now 4 months old and he has been on a schedule for at least a month now. You have a night time routine, so he knows when it is time for bed, don't worry.

I have not watched any episodes of Lost yet but hear they are great, do you recommend it?

I hope your night is uneventful and relaxing. Enjoy!

Anonymous said...

Hello sweet Patrice , I have not commented the last few days but have enjoyed reading your answer and question sessions, they are great, and I agree writing childrens books would be a great thing for you to do in all your spare time,yea right, and the idea about a book about EB is good to.

I just have one thing to tell all you Bloggers out there,who are always making comments about how cute Jonah is i have to let you all know, his picks do him little justice compared to the real thing he is sooooo adorable.and at chorch on sunday when he was smiling in his dreams , I could have eaten him up!
I am hoping at this point you have got your TV fix and are relaxing with that sweet husband or better yet snuggled up in bed, and Jonah is sleeping.
so glad that the bandage change went well, I think it will continue to get easier with time.

I have everything worked out for your request for next week,
Sandy Monday/GeeGee Thursday

Praying for a healing
Love ya Gina

Darcy said...

How often is Jonah up at night?

I love Jim too, hes hilarious and adorable!

Claire said...

I'm glad you're getting some downtime, however small and precious it may be!

Cxx

Heather said...

So glad you got a fairly normal evening! I hope Jonah had a good night's sleep for you!

Anonymous said...

I have a few questions.

What was your career before Jonah?

What does your husband do?

Samantha @ the Listener's post said...

Ok, so you know Spanish - the whole "what lies in the shadow of the statue" thing, was that Spanish or Portuguese or what? Will we ever really know what lies in the shadow of the statue, because it's really starting to bug me, you know?

Heather said...

I haven't commented much, but I've been following you for a long time. You have my admiration for the spirit, grace, and love that shine through your words. I think you would make a wonderful writer and would definitely buy any children's book you wrote, be it about EB or anything else. You are one of my heroes.

I'm so glad you got a more relaxing night and that Jonah was so happy during his dressing change! Those are two of the things I've been praying for, so He is listening!

Elisabeth Bishop said...

Good morning! Just wanted to say hello and that I love you. I keep talking to people at the Young Life Service Center who read your blog daily and are praying for you. So, hello from Connie in Human Resources and Julie in payroll.
Elisabeth

Curious and praying said...

Since you're answering questions...:) A while ago you said that the least affected/vulnerable place was on Jonah's back, and I think at the time you may have also said his hiney. I remembered thinking that was strange to me because of how much friction he would presumably produce there just laying on his back. Is that still the case (his back being the least affected), and if so, why do you think that is?

Kathryn said...

Yay!!! So glad you got a few minutes of "normal" relaxation!!! And such a relief that Jonah didn't seem to mind the change. I am really missing you guys...I officially hate this virus. I just can't wait to see you Saturday! Love you! Kiss Jonah for me!

Steve, Chelsea, Signe & Isaac Alger said...

Hi Patrice (and Matt)- I am a new follower to your blog. Thank you for sharing your life with the rest of us. I am awed and inspired by your strength. I also love "The Office" and am also a Targetholic :) My favorite episode of The Office is when Dwight has to pick a health care plan and makes everyone write down their ailments to make sure they're covered. Jim comes up with "Count Choculitis." Take care!

Melissa said...

As difficult as it must have been to learn that Gabe also had EB, I'm glad for the fact that you got that information and thus a little closure on the "why" question that must have nagged you for almost a year. We never got an answer for our boys' passing -- just that my blood pressure was too high and thus my vital organs took the blood supply to sustain me, leaving the uterus to "starve."

I'm so pleased that you got to do the dressing change earlier and that it went well, with the exception of the spit-up! Life might be getting back to a little bit of normalcy for you and Matt. My husband and I recently regained that, as our boys (2 and 4) are now going to sleep together in the same bed and without Mom or Dad rocking them. A word to the wise: never start that habit! It's a hard one to break!

Anyway, just so happy for you that your schedule is opening up a little for you and Matt to get a little quiet time and R & R in the evening.

Enjoy "Lost." I miss it so much (we quit watching when our oldest was about a year old). Someday, the DVD series!

Joye @ The Joyeful Journey said...

I just found your blog and wanted you to know that I am praying for little Jonah! (and for you, mommy)

Lorraine-bo said...

glad you got a fairly relaxing evening!

I like "The Office" too, but rarely get to see it because I have worship team practice on Thursday nights. I haven't seen that episode, but it sounds good! I know what you mean about Jim's face - and it's always best when he's antagonizing Dwight! My favorite two are when there was a bat in the office and the one where Jim timed everything that Dwight did because Dwight claimed he never stole anything from the office ... not even time!

Praying your day is terrific and that Jonah (I almost wrote Jim - lol!) adjusts well to the newer schedule!

Anonymous said...

I think a kids book is a great idea! Think about it!

My question is this: Does insurance cover all of the bandaging supplies that you use for Jonah? I know how expensive just a box of bandaids are--I can only imagine how much stuff you guys use! What specifically do you use as far as supplies go?

Follow The Stepps said...

Ok, so I know this is a late comment, but I was just catching up tonight. My family and I have been praying for Jonah ever since Kelly at Kelly's Korner asked us to. He is so stinkin' precious! What a handsome little guy! I wanted to share with you something that I used on my son when he started crawling. They are called Silipads and they are little silicone knee pads. (www.silikids.com) Maybe this will be helpful when he starts crawling??? Just a thought. I found them on sale for $9, but I think they are usually more expensive than this. I will try find the web site again. We are praying for you and your family. Oh, and I am also addicted to Target... should we start a therapy group??? Maybe Target would sponsor us! (Ha!)
Kelly

Cristin said...

Just came across your blog and have read almost all of your post, start to finish. My heart goes out to you and I pray for healing for Jonah and strength for you and your husband.

I love your blog layout, did you create it yourself or did you use a template. I am really wanting to update my blog and make it look more "crisp".