Although the left side of Jonah's face is finally healing, his right side has decided to join the party. Both sides are at the scabbing stage, with no new ones (this hour, anyway), so I'm hoping his face will be looking tons better in just a couple days.HA! Chest freezer! I get it. I wasn't trying to make a joke, but glad you guys got a laugh anyway. I'm so funny, I just can't help myself. (Reminiscent of my senior year in high school when everyone was voting for superlatives, and I was trying - campaigning really - to get voted funniest girl. I was literally walking around to my classmates at lunch saying, "I'mafunnygirl. Vote for me." It was quite pathetic actually, but really just an attempt to demonstrate my clever wit and humor. They apparently didn't get it. I didn't win. I was misunderstood as a teenager.)
Our appointment went well yesterday. There wasn't actually a whole lot to it. He asked if there were any spots besides his face that we wanted him to look at. We said no - not that there aren't spots, but I'm just not concerned about how they look - so he didn't have to unwrap Jonah at all. He did get us on a schedule to wean him off the morphine and ativan (woot woot), and gave us a dentist there in Chapel Hill who can consult with whoever our local dentist ends up being. As far as prognosis, he couldn't really clear things up for us. It will be clinical from here on out - just watching Jonah and seeing how he does. Junctional can range anywhere from dying in the first year, dying by six years old, dying in your teens or early twenties, or living a full life. So we just don't know. And we'll just have to deal with it. I loved Dr. M though (even though he was wearing a Carolina shirt). He was very kind and took plenty of time with us. It was a good trip all around, and I feel peaceful about it. I've been a little more up these last couple days. Getting out of the house has done me a lot of good. We stopped by my brother's house after our appointment yesterday because Jonah needed to eat. We knew it would get us home later, but we opted for a late dressing change rather than a screaming baby all the way home. We'll see the dermatologist again in three months.
I don't really have anything to post about, so I thought I'd open this one up to questions. Lots of times I get questions in the comments, and although I read them, I don't have a good way to answer them unless I just dedicate a post to that. So... on that note, feel free to leave any questions you have on this post, and I'll work on answering them (as I have time) over the next few posts.
Hope you're all having a wonderful Thursday. My pump's calling... literally.
70 comments:
What a 'beautiful' little guy! Thinking and praying for your family. Thank you for allowing 'outsiders' to share in your journey. God blessed us with a preemie three years ago. His name is "Gabriel" (Gabe). Just wanted to say I think you're doing a GREAT job. Happy 2nd Mother's Day!
Ohhhhh yeah! I love Q & A's!!! I do have a question actually, I have been wondering what a normal day for you and Jonah is like? I'd love to get a basic run down of what you guys schedule is.
Second question: When Jonah is old enought to crawl and play and scoot and all of those things, what will happen? I mean his EB will make it where bumps and rubs that all kids get are like horrible blisters, right?
I love reading your blog! You are very funny!!! (I would have voted for you) I feel like I know your family!
Continuing to pray from Arkansas!
I have to say that it looks like Jonah is eating well. LOL He is so cute and chubby. My question is: When Jonah starts to get older and wants to start crawling or rolling accross the floor, will he be able to do that or what do you do to help him not get blisters from being mobile?
When you talked about his prognosis, it made me wonder what had been done recently to improve prognosis. So I hit up google and saw a news article about a boy with EB who got a bone marrow transplant. I was wondering if this is possible for Jonah?
I'm keeping your family in my prayers, and praying a cure is found soon.
Glad to know that you got out & liked Jonah's doctor. I know having to look at that UNC shirt is tough..that is what happens when you have to come over here unto that "haze" (i work in chapel hill, but am not a UNC fan, in case you didn't catch my hand at trying to be funny).
The best & only thing we can do for Jonah, You & matt is to continue praying & loving the dickens out of the sweet, adorable, lovable baby boy (can you tell he has stolen my heart).
Question: did you get any medical supplies during your visit yesterday? (guaze, gloves, chux, aquafor)? one of the medical supply reps that works with me told me there was a care package left at Dr. M's office for Jonah, I want to make sure you got it. Email: wilki_025@hotmail.com
Have a wonderful Mother's Day, all 4 of of you will be in my heart & prayers.
love, kisses, smooches & prayers
Hi Patrice-
Glad you had a good appt, and that the doctor took his time. I get so annoyed when doctors want to run you out of the room!
At this point, I don't have a ton of questions (mainly because you've already been so great about keeping us up with everything!) Here's what I thought of:
1. Are you having to keep his body "dressed" because it's infected, or because the blisters are still open, or because Jonah's still too little to leave them alone?
2. Will diet (solid foods later on) affect his EB? (for better or for worse?)
3. I have a few REALLY soft blankets here that my kiddos have outgrown (sniff) - do you want them?
As always, am praying for you, Matt and Jonah. Please let me know if there's anything else I can do!
Love,
Laura in TX
Hi Guys!! As the mom of a two year old with EB...I can only say this..things will never be "clear" with Eb..it's up and down and uncertain..Like a rollercoater..hang on and take the ride and you'll see there's alot of fun stuff too...your son is beautiful..don't spend so much time worrying about tomorrow that those precious days of infancy will have passed and you will have missed it..Enjoy every minute of him and appreciate all his gifts to you..My little one is a bunch of fun..so wild and silly...you'll deal with each thing as it comes..if you try to deal with the whole picture and try to plan the next month, you'll go nuts..go one day at a time ..Best of luck to you....beth
johnbeth91@aol.com (mom to casey)
PS: and a sense of humor (with any child) will keep you sane!!
I've never commented but your blog has become a recent favorite of mine:) I've been wondering about Jonah's clothing. I am a WAY amatuer sewer, as in super beginner, but would love to try my hand at something for Jonah.
Specifically, I was wondering if someone has a created a pattern that fits Jonahs needs as far as seams/size/fasteners ect. I've been brainstorming but can't get around that seamless issue-maybe someone else has? If so, I'd love to see it!
Praying for you & baby Jonah in Raleigh. :)
QUESTION: When you go to Target and you have Band-Aids, socks, stationery and apples on your list, what ELSE do you leave with?
I went this week with yogurt drinks, a car seat, chocolate syrup and Zone Bars on my list, and I left with all of those things PLUS 2 sets of Star Wars paper plates, 3 Mother's Day cards, 6 khaki washcloths, and 2 bras. I COULD HAVE FIT SO MUCH MORE STUFF IN MY CART IF THAT CAR SEAT HADN'T BEEN IN THERE.
I don't have any questions but you inspire me to be a better Mom and Christian:) Have a wonderful Mother's Day!! And like another comment said Jonah has stolen my heart as well.
No questions. Just a comment: Love seeing Jonah in that cute outfit! He looks like all boy now with his chubbiness too!
Another comment: You are the funny person I so remember and I just love it! So glad you are trying real hard to get back to your old self even though I know your heart still hurts all the time for Jonah and of course Gabe.
From your blog I have got so addicted to others such as Stellan, Baby Kayleigh, April Rose, The Daniels and their baby Gaines, Maddie Sphor who suddenly passed away and Baby Noah who has brain damage by the sitter shaking him. I have definitely taken my life and my problems and turned them into a different perspective! Never forget how awesome I think you are and I think of you and your family each and everyday, pray for you too:)
Nancy
My question would be about clothes as well. Are there any special needs you have in that area? Do you have someone making special clothes? Is there a pattern we could use to make clothes for him? If so, what kind of fabrics are needed and what "style" do you like?
Yay again for Jonah! As for me, I vote for long, full life. AND, I do NOT understand how you didn't win "funniest". They did not appreciate you enough, I'm sure. Have a great Mother's Day! Oh, and that outfit is just precious.
He's precious!!! Can I mail the breast milk storage bags to the PO Box listed on your blog?
I have been wondering, what keeps his hair from falling out? If his skin is so fragile.
Love your incredible sense of humor.
God does give us gifts,Laughter being one of them. Find funny everywhere!
2shoes
Hello. I am pregnant with my first child and plan to breastfeed for the 1st year. I will be returning back to work after 3 months and need a good breast pump. I was wondering what pump you used. I figure it must be good for all the pumping that you do. Do you put him to the breast at all, or just pump? Thank you!!
Happy Mother's Day to you.
Hi. Love Jonahs pics. As usual he is sooooo cute. I was wondering if his blisters on his face are caused by rubbing his face on his bandaged arms. I would guess that the bandages aren't very soft. I know your mom sews and was wondering if she could make up a silky covering for his bandages on his arms, maybe from swimsuit material. I figured it might cause less friction. Not sure if it would work, but may be worth a try. Do silky materials help him blister less, or is it just something his skin does no matter what? You guys are awesome and Jonah is so blessed that you are his parents. Keep up the great work.
cute overalls! :)
No questions! Just wanted to say that Jonah is the most beautiful baby ever :)
Aww, he just looks so precious & sweet - cute overalls, too :)
I'm so glad to read that the doctor M visit went well.
I'm not sure if I told you this or not already ... when I returned from vacation, I couldn't wait to catch up on you guys - I actually "missed" you and was starving to see how Jonah had grown after a week! :)
As Marilla Cuthbert in "Anne of Green Gables" would say:
"I believe you are a kindred spirit."
God bless!
PS - I totally get the trying to get people to think you're funny thing, too!
I am a mother of three and every time I see photos of your hunk I just want to hug him. He is gorgeous! Just take it one day at a time. One precious smile or burp at a time. Try to get help and relief when you can. It does a mommy and daddy good.
Praying praying praying for your sweet boys.
Jamie
TN
Hi, It's Sara the speech language pathologist from WI...just wondering if baby Jonah will get therapy services (birth-3) soon? Maybe he doesn't or won't need them, but it is never too early!
He is so adorable and looks like such a little man in his overalls!
I was curious with his hands being wrapped all the time how will this affect his development?
Ok, I have a question...Is there any treatment as far as stem cell transplant, etc. that can help Jonah's condition? And as always, HE IS SO CUTE!!!
i think you're super funny-i would have voted for you. :0)
jonah is sooo cute! i love his lil' outfit.
hugs and prayers! jenny
You have an amazing little man!! He is absolutely beautiful!! I have been reading your blogs since Jonah was born - I heard about your family through a friend. I can't go a day without checking your blog and I pray for Jonah constantly! You are an amazing mom and such an inspiration to me. I have two young children, ages 4 and 2, I used to stress myself out over the smallest things in the daily "mommy grind"! I look at all you have been through and how you handle it - you are so amazing and I want you to know that you really have made me take a step back and realize the important things in life. You have changed me as a mom. Thank you!
Lindsey
So glad things went well in Chapel Hill. :)
Ok, here are my questions;)
Will you be able to go to an EB conference? How often are they held?
Have you been able to get Cap/C or are you on a waiting list?
Have you talked with Tiffany Van Newkirk at the CDSA yet? Are you doing any therapies yet? I can recommend some really good therapists if you need recommendations:)
Can I do any legwork for you? Do you need any lotions?
Another question... is his skin dry or does it feel like "normal" skin? :) I hope that isn't a silly question;)
About crawling... I have ideas for you. Ethan always got really bad blisters on his knees. You can make padding with old socks & there are even some products available. Hands will probably be an issue too. You may find that these milestones will be delayed because of pain though.
I love your blog and visit it daily.
I have come to love little Jonah as I love my own.
I guess the only question I really have is what can we send you? Id love to send some toys or clothes or anything. I just feel if I could send something I could be helping.
Praying for you always!
Hello! I'm glad that you had a good visit with Dr. M. As an NC State Grad, I too have a hard time with the UNC shirts. However, I truly believe that my daughter would not be here without the wonderful docs and nurses at UNC so I am quite torn in my loyalty. I'm assuming that the dentist he told you about is Dr. Wright. He is wonderful. We have taken my daughter to see him twice. Since Junctional EB has extensive dental issues, you will probably continue to see him. EB kids come from all over the country to see him. In fact, last time we were there, a boy from Louisiana was on his way. That says alot! Hopefully, you can schedule a visit with him and Dr. M on the same day so you don't have to make 2 trips. Anyway, I ditto the thoughts of Beth (Mom to Casey). Don't struggle with the whole picture, it will drive you insane. My daughter is 19 months and if I think about what lies too far ahead, I will lose my mind. Here in NC, we have a wonderful EB Support Group full of families with lots of info to share! I'm sure you've talked to our leader. Anyway, please email if I can help. Deborrah (mother to Ayden) murray0216@yahoo.com
Jonah is getting nice and chubby! I was also wondering what kind of pump you were using to get that sort of output. Good job mom!
If seams were on the outside of his clothes, would they still bother him or do his clothes need to be completely seamless?
Aww he looks so cute in his little overalls!!! I am hoping to come see you guys in the next couple of weeks. I'll give you a call soon. Give Jonah kisses!
That last comment was from me...Sabrina...haha. I always forget to put my name, as if you could guess.
Thanks so much for sharing these sweet pictures and Jonah's story with all of us. He is such a little blessing. Continuing to pray for Jonah daily. Well, nightly, actually. I send a prayer up for him every night before bed. Oh- Happy early Mother's Day!
LOVE the post title - hilarious :)
Goodness..it must be so difficult not knowing although I suppose we all go through life not knowing one day from another. That just shows that we take so much for granted. Praying for your family!!!
Glad to hear Jonah's doctor's appointment went well. Were any new suggestions made to help prevent his blisters from forming? Jonah just gets cuter and cuter every post! You are doing a great job!
Gail
Annapolis, MD
No questions....just wanted to say hey and that I am praying for you and little Jonah! You and your sweet hubby are doing a beautiful job with him and with your life. Bless you!
I just wanted to say that Jonah looks SO CUTE in his overalls!
I read your updates daily but this is only my 2nd comment. Jonah is seriously so adorable. I think he was made extra cute so people will look right past those blisters and straight to the adorableness which is his face!
My question is this...are the doctors going to give Jonah anything to counteract the withdrawal effects? It is honestly one of the worst things to go through and something that has helped me is a drug called Clonidine. I just thought you could ask the doctors about it in case they hadn't already discussed this with you.
I know just how you feel about the Carolina shirt wearing doctor! My husband and I are HUGE KS Jayhawk fans and have always been anti K-State. When our dog went into sudden renal failure due to the pet food recall, we were sent to K-State Veterinary Hospital. After a week in the ICU there, we decided K-State was no longer an enemy. They saved his life. We see past those things in situations like these. :)
No questions, just had to say AGAIN how perectly perfect Jonah is. I love his chubby cheeks-I have a 5 month old. Isn't it amazing how holding them makes the bad days better? Sweet baby~wonderful Mom. Happy Mothers Day. I am sure Gabe is smiling down on you and cheering you on at each turn.
Just a lighthearted one for you - since I'm very obsessed with names! lol.
How did you choose both Jonah's and Gabe's names? (you may have written about that earlier in your blog, though!)
Both are really beautiful names, btw!
He is so cute! I was just going to comment after "anonymous" (haha... no name) I also read about the Liao family who had some type of bone marrow transplant that has helped their son. They have two sons with the disease. I don't know if both were treated, but I know one was. Has any doctors said anything about that? I haven't read any recent stuff about it, but it is something to look into. Give that sweet boy some love from Alabama.
Okay, I now know your come back for all of those people who see you out in public and want to know all about Jonah! "You should see the other guy!" How funny! I would have definitely voted for you! Glad you had a good visit at the Dr.
Living in Mexico, this verse has become something I cling to, and I thought it might help you too. It gives me and my children peace when we hear about murders, kidnappings and the flu and all of the horrible things that happen here everyday.
Matthew 6:27 Who of you by worrying, can add a single hour to his life?
Please know we are praying for you everyday! Love from Mexico! Missy
i just love you posts!! you talking about all the funny things your pump says cracks me up. you are a great mom, and jonah, well adorable in those overalls! i too would have voted for you. i have one question and it's not about jonah....it's about DEAC!!!!
what kind of dog do you have? i have a lhasa poo and she has the same face and looks alot like your little DEAC. how is he holding up with the new baby? thanks, and thank you for sharing your story with us. i am blessed to have found your blog. you are an inspiration! God bless you and your family
julie from arkansas
I've wanted to ask for a while, and I hope this isn't an insensitive question, but do you plan to have any more children when there is a possibility of them having EB too? If genetic screening is possible, would you consider that or is it against your faith? Would you consider adoption instead?
Question 2: Have you found any creams or ointments that aid healing? Here in Australia we have an amazing ointment called Lucas Pawpaw ointment, it's all natural and healing is very quick. Also colloidal silver in liquid form has amazing healing properties. You should be able to find that in the US, and if you're interested in Lucas ointment I can send you some to try.
After doing some looking around online about EB I came across your blog (actually, my mom came across it). My husband and I just had our first baby in January. He was born with JEB also. While I was reading through your posts it was amazing because everything that you are going/have gone through is exactly what we are going through! And just when I felt like no one had any idea how things were... I would love to e-mail, or something, and just talk to someone who is dealing with the same issues. Let me know what you think! =]
All I can say is, "What a beautiful son you have." I am praying for him and your family daily. God's blessings.
Glad to hear things went well at the visit on Wednesday. Saw GeeGee last night and talked to her and I will call you about bringing food next week...looks like Tuesday might work better because we have the Policeman's Memorial Service Thursday night:)
Praying for a blessed day and a WONDERFUL Mother's day for you sweet Patrice!
Love, Aimee
Jonah looks adorable in his little overalls. He's really getting a cute chubby face. No questions for me. Y'all still remain in our prayers.
Courtney
Happy Mother's Day. He's just a cutie pitootie and I can't go a day without getting my Jonah fill. He's too sweet for words. My question, when he's learning to use his fine motor skills, will you be able to stop wrapping his toes and hands...baby's gotta suck on his toes and hands right??? Or will that not be something he's able to do? Especially when he's teething. Keep up your great parenting work and we all gotta love your humor...helps get you through the tough times.
I haven't commented before but have followed your blog since Jonah was born. I just wanted to let you know, you inspire me to be a more patient mother. When my kids are sick and I'm worn out, I think about you and what you do everyday, I then take a step back. Thank you for sharing your story with us.
Hey Patrice. I was reading "the womanly art of breastfeeding" by the la leche league, and it says that you can store milk in other types of containers. Do you have that book? or, you can call someone at your local LLL chapter and ask them.
I missed 2 posts before this one and have a dirty diaper calling me so I can't read back right now. But I wondered what your reference to the dentist was about. Is there a mouth/teeth problem? Like I said, maybe you wrote about it in a recent post that I haven't read yet. But I really must go find the stinky child now! :)
Oh yes, I think YOU should have been awarded "Funniest Girl" in High School... what were they thinking???
Jonah is such a doll... just absolutely PRECIOUS!!!
Here are my questions:
1. You have mentioned that you most likely will not be able to return to work right now... What do/did you do as an occupation??? Also- what kind of work does Matt do? (and- just my opinion... Being able to be a stay-at-home Mommy is the BEST promotion EVER!!! Cherish EVERY moment (even the frustrating, pull your hair out moments)...
2. Are you producing more milk than Jonah can eat??? If so, have you considered donating your extra milk from your "Chest Freezer" to another child/family??? I donated extra milk from my 2nd child (she would NOT take a bottle) to a baby whose mother died when the baby was just one week old... The father desired to ONLY feed the baby breast milk... Liquid Gold... it was MUCH appreciated!!! Check with your local lactation nurses if you desire to donate any of your extra milk.
Patrice- your blog is such a treat!!! It is a wonderful blessing to me to be able to pray for your sweet family!!!
Much love and MANY prayers from Elaine in Lubbock, TX!!!
He is so cute and from this pic he looks like he is growing. I so agree with some of the other commenters-you have so inspired me to become a better mommy. Some times when my son has "pushed my buttons" and I am tired, I think of you and your struggles and look at how fortunate I am to have this little angel in my life, pushed buttons and all. I have so learned from you and your story the true meaning of being thankful for the things we can take for granted, such as skin. You are such a wonderful mommy. Have a truly blessed and Happy Mothers Day, you so deserve it!!! My only question- what do you guys need, that we can send to help you out?
So glad you were pleased with theh appt!! I see some others have asked about the dressings on the rest of his body too ... what kind of timeline is that one? How long will you have to dress his arms/legs?
I hope you have a WONDERFUL MOTHER's DAY!! You absolutely deserve it!!!
Can you tell me a little bit about you and your husbands journey...it's just so amazing to read such positivity in what you are going through and I find myself just wanting to hear your 'story.'
What a cutie pie!!
I just started reading your blog after I found it from a link on Little April Rose's site...I pray for her also!
At any rate, I don't just read the blog(s), but I try to learn more about the conditions, etc...
Well, I found a website (I'm sure you've done MILLIONS of searches) but, this one had some interesting information that I wanted to share with you.
The link:
http://www.startribune.com/lifestyle/health/19471139.html
An exerpt from the article:The boy's doctors said Monday they THINK THEY HAVE FOUND A CURE for the painful disease that, though rare, causes the skin to fall off at the slightest touch and inevitably leads to cancer.
Evidently they are doing (or have done) a study at the University of Minnesota - perhaps you could contact them to get Jonah into the study!!
I hope this is helpful.
I will continue to pray for Jonah!
Just found your blog...what an incredibly beautiful and strong baby (and family). I will be praying for you!
Hi Patrice! Did you ever find anything to get the stains out of your clothes? I was at Webster Brother's in Walkertown today and saw this dense bar of pre-wash stain treating soap. I forget the name, but it was something like Fels-Nalyde. It looked really old fashioned and strong -- I could imagine Ma Ingalls scrubbing her clothes with it out on the prairie. Maybe it would get out all those Aquaphor spots.
My question is: do you find yourself with a lot of extra time (when Jonah is napping) now that you're a stay at home mommy? And if so, have you picked up any new hobbies?
Oh, and I thought of another question. Have you ever thought about writing a children's book about EB? You have a way with words, and when Jonah starts school, he could share it with his classmates.
Enjoy the pretty weekend!
Sooooooooooooo glad all went well with the dr appt.
LOVE the new pic of darling Jonah!!!
Answering questions is a great idea!
I asked in an earlier post a question and am still interested in knowing if you have air conditioning in your home for the hot humid weather there?
Have a wonderful and joyful Mother's Day!!!
praying for you all!
Luann
Happy Mother's Day to you! Jonah is a precious little boy! Everyone at my work asked me all the time how he is doing. We all are addicted to your blog. God Bless your family!!
Many Prayers from Knoxville TN.
I love your blog!! What a wonderful blessing to your beautiful son to have you as a mom. Happy Mother Day!!! Enjoy him at this age. They grow up way too fast.
You have become a symbol of strength for me, and I enjoy seeing pictures of your lovely son!
I do have one question...
I don't know if this is logical, because the only kind of medical stuff I know about is stuff they show on that TV show M*A*S*H*, but is it possible to inject proteins into his skin?
WOW-he has an outfit on. Yeah for little things.
Look at cute Jonah in his cute overalls! He's so beautiful!
I just wanted to ask, if Gabe had EB just like Jonah, do you know if it was the same kind? And was it the cause of his death? I hope it's ok to ask that. You are amazing and both your boys are so precious. Praying praying praying!
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