Friday, May 8, 2009

answers, part one

Sorry for the late post tonight. It's been one of those days where I've been constantly busy, but then look back and wonder what in the world I've accomplished for the day.

I'll answer a couple questions tonight, but will probably make this short (I always say that and they end up being the longest posts), so I can catch up on my LOST.

Matt said I should answer some of these in one sentence. I asked him if I had EVER been one to answer anything in one sentence. The answer is no, my friends. I can claim to be a lot of things, but concise is not one of them.

Most important question first: When you go to Target and you have Band-Aids, socks, stationery and apples on your list, what ELSE do you leave with?
Good question. And I saved my Target receipt from today so I could answer accurately. On my list today: drinking glasses, cooler (thinner) receiving blankets, kitty litter, deodorant, gallon size Ziploc bags. What I actually bought: 2 sets of receiving blankets (go big or go home), a set of soft burp cloths, Utz Honey Barbecue Chips, deodorant, drinking glasses, gallon size Ziploc bags, and a $3.00 whale shorts and shirt outfit (that he may be able to wear???) for Jonah. I did NOT, however, get cat litter after struggling royally to wrestle the 28 pound box to the bottom of my cart (is 28 lbs heavy or am I just really weak?) to later call Matt about what kind of deodorant he wanted, for him to then report that he had already picked litter up on his lunch break. Note to Matt: Don't put stuff on the master list if it is also on your mental lunch break list. That is in violation of statute 422, line 7, page 64 in the "Being my husband" handbook. So then I had to wrestle it back on the shelf. (Let me also add that I had put entirely too much thought into which kind of litter to buy in the first place - taking into account price, quantity, level of fragrance, clumping ability etc. and so on and so forth - go big or go home, people).

Question: What about the bone marrow transplants being done at the University of Minnesota?
I have only seen a couple things on this, and from what I understand this treatment is being done on patients with Recessive Dystrophic EB only. Also, they are only accepting children who have a sibling who is an exact match to the trial. So that's two against Jonah. I don't know if this would be a cure for Junctional too or if it would only work for RDEB kids. All you RDEB peeps out there, clarification? I am very excited about this trial - I think it's 4 for 4 with awesome success - even if it is a cure for RDEB only. If only there were more money and more awareness... let's get this train a movin'. These kids need help. I have heard about some skin grafting being done with some success on EB patients and need to look into this (but haven't yet).

Question: Why do we keep Jonah bandaged? Is it because he has wounds or just for protection?
Both. (HA! You thought this was going to be a one word answer... sucka!) We mostly have him wrapped for protection reasons, although he does have spot blisters. Right now, he has breakdown on his face, ears, upper left arm, bottom, upper right thigh, and left ankle. His ankle and bottom are his worst spots. Every where else is soft, clear, beautiful, seemingly healthy skin, but would blister at the slightest friction or pressure if unwrapped.

Question: How will having his hands wrapped affect his development?
If we were to leave his hands wrapped, he would not be able to develop his fine motor skills. Therefore, it is our plan to start leaving his hands unwrapped within the next few weeks. I'm very scared about this, and it is a definite prayer request. His hands will blister (as we saw when we tried to put the mitten on him), but we'll just have to drain and keep on going. He has to be able to touch and feel and hold and explore with his fingers. But it will be painful for him and blisters are inevitable. And it makes me sick to think about it. But we have no choice. At some point, you just have to accept the sucky parts and move on.

Question: Do we have air condition?
Yes. (Woo-hoo! Look at me. One word. Except for these subsequent ones.)

That's it for Q & A for now, but I'm enjoying the questions. Please feel free to re-post a question if you've posted it at a different time, and I haven't answered it.

Cool things:
- the Praise Baby CDs a wonderful blog reader sent. Jonah really likes them, and so do we. Thank you!
- the Target gift cards and one hour massage I received from blog readers for Mother's Day. You guys are too sweet!
- the FREE freezer that was DELIVERED TO ME by a sweet, sweet blog reader. Thanks, Trish.
- the plethora of milk storage bags I now have.
- the 1,000 Japanese cranes the Japanese class from South Central (where I used to teach) sent me. In Japanese culture, you try to fold 1,000 cranes to make a wish come true. And those sweet high school students spent two days folding cranes and wishing for Jonah. They also raised money for us. High school students. Teenagers. Amazing people.
- And finally, the fact that I received packages from MckMama AND Kelly today. WHAT? If only Angie had sent me a package, it would have been the ultimate blogging trifecta. Hey, two of three ain't half bad.

And now, I must go. I'm trying to watch LOST and type, and well, I'm completely lost. What year is it? Where are they? Who's that? Who is his daddy? Why are people coming up out of the water? Whose side is Sawyer on anyway? I'm so confused.

And next time I say it's going to be short, I'm for serious.

40 comments:

Anonymous said...

This is my first time to comment, but I have been reading since Jonah was born. Can I just say, I love you and your family. You are so witty and real, and Jonah is the most precious thing. I hope for so much good to come your way, and I wish you a very, very blessed Mother's Day.

Love,
Deanna

Anonymous said...

P.S. - all the bloggers you mentioned are all the blogs I read, plus CJane and NieNie. Good stuff all!

Michelle said...

two questions:

1 - will you be caring for Jonah at home full-time or will he go somewhere after you return to work? (and if you go to work, how on earth will daycare work?)

2 - have you thought about Jonah's schooling down the road? if you'd like him to go to a public/private school or if he'll be homeschooled? these all kinda go together, so you can answer them together. ;-)

praying!

- michelle

Jenny said...

Hi Patrice,
I have a couple more questions:
1. Which pair do you like better: Kate & Sawyer, Sawyer & Juliet, or Kate & Jack?
2. Do you think Ben is good or evil?
3. Do you like The Office? I love that show, but I haven't seen this season yet. My hubby and I like to watch them on DVD (because we have a (almost) 3 year old and my husband works a lot of evenings, so we watch DVDs when we can. Which Office character do you like the most?
I'm going to keep on praying for you guys, especially about unwrapping his hands.

Jenny said...

P.S., If at some point you decide to put Jonah in daycare, I want to let you know that the daycare that my son is in is wonderful. Its in Kernersville and the staff is so caring and well educated. They are super careful and work hard to comply with all the laws. If you want more info, please let me know. :)

Laura A said...

Thanks for all the information, Patrice! Am also glad to know that I'm not the only one who heads into Target with "a few" things on her list and comes out with at least twice that!

I'll pray that any blisters on Jonah's hands will be minimal and that they won't keep him from trying to use his sweet fingers.

Have a great weekend - enjoy Lost!

Love,
Laura in TX

Christy said...

I've been lurking, reading since Jonah was born, and I'm praying for him and for your family!!

I saw you were looking for thinner receiving blankets, and I wanted to recommend the Aden and Anais muslin swaddling blankets. They are big pieces of very soft muslin, really big, nice breathable fabric.

Mike and Molly Spivey said...

Thanks for answering our questions! You are just plain amazing and the perfect mom for Jonah!

And that fact that MckMama and Kelly sent you something is oh so exciting!!!

Here is my question:
1.) How do you change Jonah's diaper while trying to avoid friction? (IE: how do you wipe off the poop, or avoid diaper rash, etc.)

2.) Will parts of his skin eventually adjust to the friction? for example - when he crawls and walks, I am sure he will have blisters on his knees and feet, but will the skin eventually adjust to that? And when he does start those movements will he develop blisters even if you keep him wrapped?

Lauren said...

Wow--it sounds like you've had a great beginning to your Mother's Day weekend! A freezer? Talk about answered prayers. I'm curious what was in the packages from Mckmama and Kelly...

Thinking of you, Matt and Jonah this weekend. Love you and miss you, chica :)

Melissa said...

Why not put on gloves with fingers maybe that will help with the movement of the fingers...

ashpuck said...

You are so funny! I love reading your posts and getting a good laugh. Have a wonderful mother's day weekend! You deserve the best.

~Ashley

saykay said...

Although I have just been an "anonymous, no comment reader" for a while now, I just have to comment. :) I look forward to your updates. First and foremost to hear how Jonah is. I pray for him every day. And secondly, because of your awesome..ness. Ha, not sure how else to phrase it. You are witty and it is great! Also, someone getting you a freezer made me cry. Oh, glory to God for He is good. How awesome is that (and all the other love given to your family!)?

(PS, yay for Target!)

-Sarah

Katherine said...

Ha! I'm so glad you answered the Target question. I thought you would. :) Sarah commented on my Target post, too, and I told her I think I am a Crump sister who was separated at birth.

Next questions: What is your favorite spot in the world? Where have you been that you'd love to go back to? And where haven't you been that you'd like to go?

MelH said...

Just wanted to say thank you for the glimpse into your life and for the record, I think you are incredible.

Aunt Theresa said...

thanks for taking the time to answer questions! :)

Maddie's Mommy said...

Question...
I think I have heard that EB is supposed to get less intense as the child gets older..if this is true do you know if its because the body gets more and more immune to the disease?

Melissa said...

After reading this post, I can't believe you weren't voted funniest girl in high school. They just didn't understand good humor, obviously!

Sweet Jonah! I look forward to checking your blog every day, just to see that precious blessing God has given to you. He is amazing! Oh, the joy of having a beautiful baby after losing an equally beautiful baby. I think Gabe and Jonah most definitely look like brothers!

Praying for speedy healing for his blisters. It is a privilege to pray for him. Thank you for sharing your life and allowing us to be a part, through prayer, in what God is doing in your family's lives.

Love,
Melissa

Just'N Angel said...

You have a husband manual, too! My husband just doesn't believe it exists, but now...I have proof!

Claire said...

What a lovely post! And the husband manual totally made me LOL. I hope you have a blessed and happy Mother's Day!

Cxx

Katie said...

Just a quick thought on the hands. Ella has RDEB so that's a bit different, but when she was a baby we used fleece socks instead of mittens. Since they didn't have elastic they didn't cause as many problems. Also, we have some friends with a daughter with JEB and they learned how to wrap each finger individually. She uses her hands like there is nothing on them and it protects her fingers. It might be worth looking into. I can give you their contact info if you want.

Katie
Mom to Ella, a big 22 (almost 23) month old and I can hardly believe we're approaching her second birthday!

RLR said...

I so enjoyed reading this post - and your version of humor, even if it wasn't tops in high school! Hope you have a great weekend!

two red heads and two brunettes said...

I love Lost too, but I am completely lost.

kelly said...

you are so funny! i need a copy of the husband's manual! i have a package with some storage bags to mail to you today. sounds like you already have a million but you can pass them on to another who needs them if you have enough. jonah is an angel and i pray for him daily!!!

Jennifer said...

An EB family used fingerless gloves made out of lycra for their child's hands. You could try that?

Jennifer said...

I found a nice video on hand wrapping that keeps the fingers "free" (still bandaged, but useable!)

Disregard the beginning part of the video until she starts wrapping his hand, because her son is an RDEB patient and she talks about what could happen if you don't wrap an RDEB hand...and so on, and that doesn't pertain to Jonah.

It's the very first video on this page
http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html

Kelly said...

I'm sorry it wasn't much - I want to do more in the future- if you have a wish list of things that would make your life easier - would you list them out sometime. I know I'm not the only one who would like to know!

Anonymous said...

Dear Funny Girl and Family,
As I prepare for my family's famous (?) Sunday dinner, I am reminded that you asked for an invitation. Know that one is coming, but I really figured you might be spending your Mothers' Day with your own family. I am brought to my knees, greatful for the many ways God is using your blog and Jonah's EB to allow people to serve you. God is SO good to us! I am still looking forward to the day that I get to help with Jonah's care and comfort. My fingers itch to hold him, and I am willing to take the necessary training. I know the Praise Baby DVD's are great. Madison will sit and watch the whole thing; it's like she is hypnotized by the colors, the music, the actions...but isn't that the way it should be for all of us as God's kids? We should be wrapped up in His goodness.
May God bless you and your loved ones as you share your time this weekend. And if you ever need someone to accompany you to Target, let me know. I love me some Target!
Take care, Sandy W.

Anonymous said...

I have read your post since jonahs birth..got it from kellys korner. anyways, just wanted to say that you are so funny! and that I am praying for you all- all the time. I love reading your blog. and my sisters and i LOVE target too!!! When my son was 2 and a half and i would ask what his fav store was he would say target.....thats my boy;0)anyways take care and have a great mothers day! love sara from st louis,mo

Katie said...

First - I'm really glad that you got the cranes. The kids talked quite a bit about working on them and asked about you and Jonah A LOT.

Secondly (and dare I say more importantly) - If Batman and Superman got into a street brawl, who would win?

Thirdly (and I'm hoping you were privy to this conversation) - At what point does a rock become a boulder?

Hopefully those questions will be enough to keep you busy because you obviously don't have enough to do.

Angela said...

Yay. It was great to read an upbeat post from you! Not that you're not allowed to be not-so-upbeat, LOL!

Next week, before the season finale of Lost at 9:00, there is an hour-long special on at 8:00 that should catch you up on what is going on.

I wondered if you were able to get the Aquaphor out of your clothes yet. Have you tried De-Solve-It? My mom used some the other day on a shirt of mine that I was wearing as I was Aquaphoring (yes, it's a verb, as I'm sure you know) my son. He kicked me right as I had gooped a bunch on his foot. But anyway, my mom used some De-Solve-It on the shirt (but I'm sure there's some special technique she used that she'd like to describe in great detail, LOL) and it came out! So I told her about you, and she keeps bugging me to get in contact with you and get your address so she can mail you some.

So please email me if you can at theamicks77@comcast.net. My name is Angela.

Oh, another thing I've been meaning to tell you. Remember your sad but heartfelt post a few weeks or so ago, where you were just really mad about how Jonah wasn't eating, and you were like, "Enough already," and you said it made you sad about how people will look at him when he's older and think he's dirty? (Wow, that's a run-on sentence...) Anyway, that post reminded me of a post I wrote about my own son (who has Down syndrome) last January when I was soooo tired b/c he was in the hospital for his second surgery. Here is the link to that specific post: http://theamicks-angela.blogspot.com/2009/01/home-not-so-sweet-home.html

Just thought you might like to know you're not alone.

HUGS!!!!!!!!!!!

Angela (You email me back, you promise??? My mom will never stop bugging me if you don't...) :)

Anonymous said...

Question-Since you now believe that Gabe also had EB, do you have an idea of the chances of having another child with EB? Would the possibility of another child with EB keep you from having more children?

Anonymous said...

Hello and happy mother's day...I just wanted to say that if the day ever comes where you have to wrap his fingers, don't worry that it will stunt his development or exploration...I go back and forth bandagign and unbandaging my son's hands..we wrap the fingers individually when we do..and he is able to put a pea into a hole the size of a cheerio ..he has better fine motor skills than most "normal" kids his age..we also have spandex/lycra gloves for him he wears alot..Just thought I'd tell you don't worry if you have to wrap...he'll still develop normally if you wrap fingers separately...I too am excited about the bone marrow transplants being done at minnesota and although it's only being done on RDEB patients, it brings hope that it will expand to other types..so keep you fingers crossed and keep him healthy!! Right now minnesota's trial only includes RDEB patients with an exact sibling match..columbia university here in NY is beginning a trial of unrelated transplants..It's a time of hope ...a cure is just around the corner for them all...enjoy your mother's day..
beth
johnbeth91@aol.com mom to Casey..

Anonymous said...

I have come to the conclusion that Target has a $100 cover charge. I never enter unless I expect to dish out ATLEAST that much! I love your blog and continue to pray for all of you!! I pray for a miraculous healing for Jonah!! Happy Mother's Day to one AMAZING mother!!!!!
Love from Lindsey in Florida!:)

Debbie,mother of two said...

Happy Mother's Day! Enjoy your dad with your beautiful baby boy. God is so good. Continuing to pray for you all.

Anonymous said...

awesome post! Enjoy your first Mother's Day! You deserve it!
Daisy (alabama)

Teri said...

I do think this is my first time commenting, but wanted to tell you how much your post mean to me and that I am praying for you and your family.

I know some of what you are going through, I've had 2 sick babies, and my heart breaks for you and I rejoice for you. I know that there are those horrible hard times and decisions, but I also know the joy of being your child's mother no matter what. You and your husband are doing such a great job and I am so thrilled to see you advocating for Jonah.

I read and tear up at every post- keep up the great work.

HAPPY MOTHER'S DAY!!!!!!!!!!!!!!1

JMorgan said...

Happy Mothers Day to you. You are an amazing strong women and inspire all of us...even us "old" moms. Blessings to you.

momma said...

i'm not concise, either. that's ok!

i will be praying for jonah's fingers and hands as you will be starting to leave them unwrapped.

Tribulation said...

if you check out that website i sent you, it has techniques for wrapping the hands of eb patients kids in particular.

heres the link for the page on hand wrapping

http://www.ebinfoworld.com/hands.htm

MckMama said...

Ultimate blogging trifecta!?!? I snorted SO loud when I read that!!!

P.S. LOOOOVE your new basement!!! Hooray!! You deserve it!!!!