Friday, October 16, 2009

answers, part 2

What are our specific needs at this point?
Ugh... I hate answering this question, although it touches my heart so much that you'd be willing to ask it. I'd say we are stable as of now financially although that has so much to do with you and your generous donations and magnet buying. Magnets are still for sale (see my sidebar) and Pinedale Christian Church in Winston-Salem still has an account set up for us too. Just put Jonah's name in the for line. Jonah's supplies are mostly covered by insurance although there are months we still get a $600 -$700 bill for them. (They cost anywhere from three to seven thousand each month before insurance.) As far as supplies we have to buy over the counter, we always need Aquaphor, alcohol swabs, Chux (blue waterproof) pads, and Polysporin. Thanks for asking, but please know that we don't EXPECT anything. Oh yeah, now would be a good time to say that I've used many of the Similac coupons you've sent, but I think we're good to go for now. Partly I can't use them fast enough and some of them are expiring before I can use them and partly I'm buying formula on Ebay a lot (which I would recommend). If I can find an auction with free shipping, I can typically get his Alimentum for $12-15 a can rather than $25 ($20 with a coupon) at the store. Just a nifty little tip for ya!


How are Jonah's hands doing now that they are completely unwrapped? Can he pick up and play with toys without hurting himself?

See for yourself.


So in a way, not so good. But it could be so much worse. The very first time I tried unwrapping his hands (soon after we came home from the hospital), they swelled up completely and blisters encased many of his fingers. So we are thankful for this! They have new blisters every day. Sometimes we have a great day where I only have to drain one or two little ones, and sometimes it's really bad and I have to drain ten to twelve blisters... some of them being the big, angry blood blisters.

He can grab (still working on this one) and play with toys, but we try to keep them on the soft side. He has just started shaking things and patting things within the last couple weeks, so we are excited to see that. He is still unable to hold heavy things. I may or may not have let him attempt to hold my cell phone. It may or may not have dropped on his face. I couldn't rightly say.

I don't see a direct connection between holding/playing with toys and increased blistering. I think he does most of it by rubbing his hands together, rubbing his hands on us and things around him, and chewing on his fingers.

Will Jonah's limbs and body always have to be bandaged even as he gets older?
We are not sure, but unless something changes he will have to bandaged his whole life. Maybe he'll get a little tougher as he grows, but there is no way to know. Every case of EB is different. The non-lethal form of Junctional (which we think he has) is labeled a "moderate" type of EB, but Jonah, at this point, seems to lean toward a more severe moderate. Any part of him that's not bandaged blisters. And his feet chronically blister despite being wrapped. We'll just have to wait and see. But we are praying for a miracle and have faith that one is coming!

What is the one thing I'd want people to know about Jonah's EB?
I guess I wish people knew what it was without me having to explain it. But if I can't have that, I just wish they knew that 1) we didn't hurt him and 2) he's not contagious. I think that would cut down on a lot of the dirty looks. And even though they make me mad, I worry more for him as he gets older and starts noticing the staring himself.

What is the one thing I want people to know about Jonah that has nothing to do with his EB?
Man, I could write a book on this one. I guess I want them to see him for who he is. He has such a sweet, content personality, and he is soooo funny. His laugh is THE SWEETEST THING on the planet. I often laugh so hard at him laughing I can't continue doing what was making him laugh in the first place.

Do we plan to have more kids and how does the EB gene affect that?
We do plan on having more kids (as much as you can "plan" something like that), although we do not plan on having any other kids that are genetically ours. JEB is a recessive disorder, so Matt and I are both carriers. That means there is only a 25% chance that any child we have will have EB. However, we are two for two, and unless God has a different plan, we won't risk it. EB can be isolated only after an egg is fertilized and since we feel the baby is already alive at that point, "crafting" an EB-free baby is not really an option for us. We are considering both embryo adoption and traditional adoption. I'm leaning more toward embryo adoption (where IVF couples are finished having kids and donate their remaining frozen embryos to adopting couples... I would be able to carry, deliver, and breastfeed the baby). With traditional adoption, I am so scared that the birth mom or dad would change their minds. I would rather experience the heartache of the embryo transfer not "taking" over bringing a baby home, only to have him/her taken away. I don't know. We have a lot of praying and thinking to do. I'm ready to start that thinking now (just in case whatever process we choose takes a long time), but I don't think Matt's quite there yet. (He's still rejoicing that he finally has his not-pregnant - therefore a little more sane - wife to hang out with for a while. :) ) The only fear I have with embryo adoption is that typically they would implant two to three embryos (I think there's only a 30% chance that ONE of the embryos would result in pregnancy), which means there's always the possibility of multiples. Don't get me wrong, if we end up pregnant with twins someday, I will count my (double) blessings and be totally pumped about it, but imagining (right now) having an EB toddler and twins makes me want to pass out a little bit.

What do we do for Jonah throughout the day? How is his general care modified for EB?
I get Jonah up in the morning and immediately change his diaper and lance any blisters on his hands and face that have popped up or refilled overnight. Then, I let him play in his high chair while I eat breakfast, check email, read blogs etc. I then attempt to feed him some oatmeal with fruit or yogurt with oatmeal which he mostly refuses. I then get his bottles ready and spend from about 9-10:00 feeding him and watching Regis and Kelly. My help arrives around 10, and we try to start dressing change by 10:30. Bath and dressing change take about two hours (depending on how many new blisters he has on his feet), and then I feed him again afterwards. Then I try to get him down for a nap, but typically he'll only sleep for twenty minutes or so. After he wakes up we play and hang out until he starts acting tired again. So I try to take advantage of the sleepy time to work in another bottle (he's still only eating if he's asleep), and then try for a nap again. Sometimes it works. Sometimes it doesn't. Matt usually gets home around 5, we eat dinner, attempt feeding Jonah solids again, set up for tomorrow's dressing change, and hang out with Baby J until we start the bedtime routine around 7:30 or 8. We fix his bottles (which always have different meds in them), change his diaper, and lance any new blisters on his hands and face that have popped up since dressing change. We Aquaphor his face and hands before bed. We feed Jonah and read The Chronicles of Narnia until he finishes his bottle. He's asleep by then and we put him in bed.
We can pretty much do everything normally but just more gently. He obviously can't wear disposable diapers, so we mostly use FuzziBunz (exciting diaper news coming soon!). I have to put a disposable with the elastic cut off inside the cloth diaper, since my cloth are no longer absorbent. Aquaphor + Cloth Diapering = DISASTER! Now I'm using Northern Essence Diaper Salve which is supposedly safe for cloth diapers, but it's too late. They're toast. I can use wet wipes on his bum and face as long as they are plenty wet and I don't rub. It's more of a gentle wiping off than a rub. Then I lather his bum up with the diaper salve (every time) and diaper him up. We have to be careful picking him up. You have to scoop him up with one hand under his back and the other under his bum. Picking him up under his arms will cause friction under his armpits. When he spits up, we blot instead of wipe. We put Aquaphor on his bottle nipples to help reduce friction in his mouth.

Can we hug and snuggle him as much as we want? Can his skin handle hugging and rubbing through the bandages?
Besides his feet, his skin is fairly durable if bandaged. So yes, I hug and kiss all over him all the time. I do rub his back although I'm not sure if he can even feel it. Basically it's the picking up thing that's different... and just making sure you move him carefully when changing positions (lying back in my arms to on my shoulder), to make sure you don't rub his skin at all.

I'm still working on the rest of your questions and will get the final installment up in the next couple days. Thanks for caring enough to ask!
Hope you are having a great Friday.

25 comments:

Anonymous said...

Thanks should go to you for taking the time to educate us. Kudos for being open-minded and allowing our questions in the first place. I appreciate the info! kara

Heather said...

I think Jonah has the most precious, adorable hands ever! Just sayin...

Kristie in Arizona said...

I just wish more people knew about EB so they wouldn't wonder if he is contageous or if you hurt him. People need to know how wonderful you all are and how lucky Jonah is to have you and Matt for parents. I am honored to be a daily reader of your blog. Thank you so much for answering questions and sharing with us.

Anonymous said...

Patrice-

I am really just curious. Do you really get a lot of hateful messages/email? I often find it heard to think that people can be so mean spirited. No matter, Jonah is your little boy-nothing can take away from that. I wish people would just ask you instead of stare. I work in the MRDD field and most parents I work with state they would rather someone just ask instead of stare.

Jen Burns said...

I follow your blog regularly and I was looking back through some of your posts from the beginning. From sweet Gabe to now sweet Jonah. You have remained so faithful, so loving, so Spirit filled. Truly an inspiration and blessing to others. You share the importance of making less judgments about people and situations or the "looks" of things and help us all to focus on the good and praiseworthy things from God. May God continue to bless your family and especially little Jonah with strength and healing.

Wanda Wilkinson said...

Patrice, Thank you for sharing so much of your life with us. I know you hear this often, but I truly believe that Jonah is one of the most precious babies that has been born.that says a lot since I had 2 of my own. Jonah's personality shines in his pictures & the videos you post.

You can tell that he is one loved child & that he loves you back. When he hears yours & Matt's voice his little eyes & face light up.

I have one question & you can answer me by email & tell me I am out of line; but I live in Durham & go to Boone to visit my daughter & I would love to stop one day & help you out. Let me know if that would be ok..like I said you can email me.

I am getting ready to place another order for medical supplies, & I see you mentioned more chux.so I will put that on the order. Do you still use the 25 g 1"needles? Do I will get some of those too. Anything else I can order so you & matt will not have to pay out of pocket??? Let me know by Friday 10/23.

Love, prayers & blessings to you, Matt & jonah

Nancy said...

I'm an adoptive mom of one (with one on the way). Please feel free to email me/facebook me if you have any questions. I realize that baby #2 is probably a ways off yet for you.

We started our China adoption 2 years ago (and still continue to wait, probably another 2 years). In the meantime, we adopted Noah, a domestic adoption. He was our surprise baby, our miracle! I never wanted to do domestic for the exact reasons you mentioned.

God is good and he kept his promise that we'd be parents (just like he kept his promise to Noah in the Bible)!

Kelli said...

You are awesome to take time to educated us and spread the news about EB! We don't "know" you all but we love Jonah and are praying with you for a miracle!!!

Logan and Jack's Mommy said...

I found this post completely fascinating, and I don't think you give yourself enough credit for how much you do for adorable little Jonah. He is so lucky to have you (so patient!) for a mom. I can't imagine a two hour changing/bath everyday, yet you take it in stride. I hope God blesses you for all that you & Matt have been through. I so enjoy your blog. (PS- For the record, I can't imagine twins AND an EB toddler, either. I reckon either one or the other is plenty of work!)

Rachelle said...

I enjoyed learning more about how you handle your day and about Jonah's EB. As a mom of 2 adopted children (one closed adoption and one open adoption) and survivor of 3 failed IVF attempts, I would love to talk with you about adoption and implanted pregnancy if you ever want to talk to someone who has been through it. No pressure, just know it's available if you want it. You also might want to check out the book "Dear Birthmother, thank you for my baby." (in your spare time lol). It really helped me understand the birthmother's perspective as I was considering adoption. You can email me or you can always reach me through Nicole.

Thanks for sharing. Jonah is so cute!

Rachelle Prewitt Dries

amanda said...

I loved reading this post. I love your perspective on parenting Jonah and how you and Matt approach the whole thing.
I am sorry people give you looks, that breaks my heart. People need to remember they don't know the whole story so they should keep all thoughts and facial expressions to themselves. It's just more polite.
When Ethan was younger we had a hard time picking him up under his arms. Because of his hemophilia he got a few pretty big bruises from that. And when he fell and hit his head and had a huge hemotoma on his forehead, we got lots of looks. I really do admire you and Matt, you both have so much strength and beauty and God glory shines though you both. Thank you for sharing your on-going story with us all.

Anonymous said...

Just like the Williams Family I have had some computer problems, although mine's not Dell is is at least 15 yrs old.
After reading about your Q&A I feel exhausted. You & Matt along with family are so strong. Jonah is a very BLESSED LITTLE BOY.
prayers always,
2shoes

Mindy said...

Patrice, I have a good friend who did embryo adoption and has 3 children who are genetically brothers and sisters but not genetically the mom's or the dad's. Let me know if you want someone to talk to about that or ask questions to. I know that she would be very willing to tell you a little about her journey.

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

You already know this, but I have to tell you that your little boy is absolutely beautiful.
I will be continuing in prayer for him.

Covey and Justin said...

I read your blog and think about Jonah a lot. From reading your day to day activity it sounds like your little boy may be waaaaay overtired which is why he isn't napping well. My little boy slept horribly until we got him on a good napping routine and his personality is so different now! We used Healthy Sleep Habits, Happy Child and it is the best book ever. I try and tell all sleep deprived mommies about it! It was written by a sleep psychologist who studied infants and babies in sleep labs and stuff. Really interesting stuff.

Sabrina said...

Thanks for educating us. It makes me so sad that people would think those things about sweet Jonah! I would love to snuggle his sweet Aquaphor face. :)

Kathryn said...

I have a dear friend that has two wonderful children (yes, TWINS!) from embryo adoption! I know she would love to talk to you about it if you want me to get her email for you! When the time comes, of course...I know you're sorta busy right now :)
Thanks for the answers...you have an amazing way of writing that makes me laugh and cry all in the same breath! I wish I could actually MEET you, in real life person!

Claire said...

Oh, I love these posts. The little Jonut is such a gorgeous wee man!

Cxx

Nora Lee said...

Thank you so much for taking the time to answer so many questions, many of us may wonder about but haven't asked. Not only does it educate us about EB, but it does also give specific prayer for Jonah and your family. He of course is so sweet, and I LOVE the videos you put out there to share him with us :)

lifelaughsandlove said...

I especially enjoyed your answer to the question about what a typical day is like. It definitely gives me an even greater appreciation for all that you do for Jonah.

~Amy

Anne Claire A. said...

I've been following your blog since Spring 2009 and must say your sons are so precious. Thank you for sharing your lives with us and educating us on something I was not even aware of.

Joanie said...

Are Chux pads the ones they put under you in the hospital bed/like puppy pee pads? If so, I have several extras that came home from the hospital with me. I'd be happy to send them to you. Can you receive packages at your PO box address?
Regarding the IVF/embryo adoption, I have a friend about to go through IVF. Her doctor said that often, either all the embryos implant or none of them do...it's like the conditions either are right or they aren't. Obviously it's something to discuss further with a doctor but is something to think about. (I have twins, and it is tough at first but gets easier quickly. It's still more time consuming that having just one, but I hear they start entertaining themselves as they get older.)
Thanks for taking the time to answer those questions for us! :)

Mari said...

Patrice, How do I go about helping with the aguaphor and such? Do you prefer I get it here and mail it to you, or do you prefer a Target gift card and you can go get it (and have a good reason to go to your favorite store?) I am open to either way, it really doesn't matter to me, I just want to do what is easiest for you. Please let me know. I am assuming that Target has this?

The questions were interesting and reading your responses to them has given me an entirely new view of your every day life with Mr. Jonah. His wonderful personality shows through in all the photos you share--he looks like Mr. Personality. Precious to be sure.

Blessing, Mari
marilroll@comcast.net

Anonymous said...

Hi there I am on the IVF rollercoaster at the moment. Many RE's are very happy to do single embryo transfer and it seem to be increasing trend. Best of luck when the time comes to make these big decisions. Thank-you for taking the time to keep your blog updated, I really enjoy seeing little Jonah and learning about your journey.

Ashley said...

Jonah is such a beautiful baby. :)

My sister-in-law did embryo adoption. She was a one of the rare cases in which she had triplets. I hope this doesn't discourage you. It is pretty rare but it is a "risk."