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Exciting news - the magnets are here! If you ordered one, it should go in the mail by tomorrow at the latest. They are totally cute, if I do say so myself. And they did not turn out Carolina blue. They are a very nice dark teal color. I like them very much. And if you haven't gotten yours yet, please consider buying Jonah's magnet (on my sidebar). Ten percent of the proceeds will go to DebRA for EB research and to take care of other EB families, and the rest will be put toward Jonah's care. Plus it's a cute magnet, and don't you want to be cooler than all your neighbors?
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Jonah has a new blog! Our family has set up a new blog: jonahssupportgroup.blogspot.com specifically for fundraisers and prayer requests. It's basically the same idea as the Facebook support group, but the blog will be more easily accessible. Check it out!
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Q & A
What does Matt do for a living? What did I do before Jonah was born?
Matt is an accountant for a business here in Winston-Salem. I was an Administrative Assistant for the Tar Heel Region's Young Life office. I hope to (someday) be able to return to the position, because I should be able to work from home some. Before that, I taught high school Spanish for four years - 3 years in Pitt County and last year at Grimsley High in Greensboro.
What will we do as far as daycare is concerned? Schooling?
At this point, Jonah is way too high-maintenance to consider a traditional daycare situation. So for now, I am a stay at home mom indefinitely. I don't know how things will be in the future, but if Jonah's doing okay, I'd love for him to be able to go to public daycare at some point - just for the social advantage. I think he would enjoy it. I had considered home schooling even before this whole EB thing, but I don't think Matt's a big fan of the idea. So... I still have no idea what we'll decide about schooling (public? private? home?), but that has less to do with EB and more to do with the fact that I worked in the public school system for four years, and I'm not a huge fan of a lot of what goes on there.
What do you need? What can we send you?
Okay, but only because this was a recurring question. Here is a running list of over-the-counter things that we always need.
- Aquaphor
- Polysporin
- Masks
- Alcohol swabs
- Hand sanitizer
- Dawn dish detergent (to get the Aquaphor out of his diapers)
- Similac Advance Soy Powder formula
Our other supplies that we order through National Rehab are:
- Conco conforming gauze (4X4, 4X3, 2X2)
- sterile gauze
- 25 gauge needles
- Vaseline gauze (3X9)
- Mepilex Transfer
- Mepilex Lite
- Tubifast
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And finally, on this night five years ago I was:
- just finishing up with our wedding rehearsal
- eating barbecue, listening to a blue grass band, and getting ice cream from an ice cream truck
- NOT sleeping at all
- and I was looking forward to tomorrow, the day I would get to marry the love of my life and my best friend
- I was dreaming (in my awake state, of course) about this:
58 comments:
Beautiful picture! Happy 5 years with many, many more to come! With Jesus as the center of your lives, it keeps getting better (I'm going on year 9 myself) :)
And I'm sure Jonah, will grow to love Target just as much as you. How can you not love Target?????!!!!!
Looking forward to sportin' my magnet around really soon!
I'm a Targetholic too!!
Happy Anniversary!
Beautiful picture!!!!
I agree about Target. My daughter who is 18 months old says Target.....lol!!!
Happy Almost-Anniversary!
I am also a Targetholic. But we have been broke the last few years (college students, now starting in the ministry) and I avoid Target because it is depressing when you can't buy stuff there. My girls love it too, so I can't wait to save some babysitting money and go buy them something cute!
Thanks for posting the list of things you need. I can't help now, but I am saving the list so when I have a little extra I can help out. God has really blessed us through our broke years as students, and it's nice to see we are finding our way out, and I can't wait to be able to do more to help others!
Hmmmm...I'm thinking I need to watch the Office soon to get some good laughs. I've only seen 2 or 3 episodes, but I here so much about it.
Beautiful picture! I too had an outdoor wedding . . . MANY years ago! Here's an easy question - where did you and Matt get married?
Oh good, good, good! The magnets are here! My son was just asking me about those right before I logged on. He's 25 and is just as excited about displaying one was I am. So happy we could be a part of the fundraiser. I love Jonah so much! Oh, and my wedding anniversary is tomorrow - 5/15 --- 27 years!! Hope you and your precious family are having a wonderful evening.
In Christ,
Sandy Moore
Love it. My name is Erin and I too am a Tagetaholic ;) I cant even begin to tell you all the things I have bought there for my son just so I could continue to shop.
Happy almost Anniversary!
Happy Anniversary! Since you are now a SAHM (Stay at home mom), and depending on what types of situations you think Jonah can handle well as he grows up, you might be interested an MOPS, Mothers of preschoolers. It's a fun way to get together with other women in similar situations. They meet at different churches and I"m sure there are several chapters in your area.
Happy Anniversary!!!
And when my daughter needed to wear masks and or we needed to wear them around her for her safety, the doctor and local children's hospital gave them to us for free. Check it out. I am praying for you. God bless.
Happy Anniversay!!! I myself have my 8 yr anniversay in a few weeks. I hope Jonah will learn to love Target. haha. Continuing to pray for you beautiful family.
Happy Anniversary, Patrice!!
Don't worry - Jonah will grow to love Target too - especially when he gets old enough to recognize the toy aisles!
Can't wait to get my magnet!
Continuing to pray!
Love,
TX Laura
Happy anniversary! And thanks for answering those questions, I do find them interesting. It may seem boring since you are living that life every day, but it's a world apart from mine!
I have a question/suggestion about the magnets. Can they go on cars? If not, you might consider having someone make ones that go on cars. Best would be the window ones that can peel on and off easily. That would be a good way to get the word spread a little more, possibly with a link to this blog or Jonah's new blog. I would definitely buy one!
Happy Anniversary, Patrice and Matt! I'd love to see more wedding pics tomorrow! As I was in Target today, I thought about you and Sweet Jonah. I was wondering if y'all were enjoying a target trip as we were enjoying ours!!
Love and prayers,
Erin in va
I think it's ironic that you think Jonah would enjoy the social aspects of daycare, but don't want to send him to public school. (I'm not trying to offend you or bring you down- just pointing out the irony) As for Target? I love thee too.
Patrice...you are the coolest!!!! I have been praying for your family since Feb.28th...the day after a friend of mine sent out the request via facebook. I love your sense of humor, and the way you always seem to find something funny even in the midst of such stress. I KNOW that God is in the miracle business...and I'm still claiming a miracle for little Jonah!
By the way, I am a "Tar-zhay" fanatic, too....but I only get to go to one about once a month, because it's an hour away! You're so lucky! And, I, too, have a Medela pump-in-style breast pump (mine's 10 years old and still going strong on baby #4)...and I don't know what I'd do without it! Keep your head up, your eyes fixed on Jesus, and your heart wrapped tightly around your precious family. You have no idea how many lives you continue to impact!
Much love from Amy in Eatonton, Georgia
awww, happy almost anniversary! that was such a beautiful day--hard to believe it's been five years.
what are your plans over memorial day? i would love to come up and visit at some point, but i know you've had lots of visitors lately. just let me know if there's one weekend that works better than others.
My kids go to Grimsley and I remember hearing about your loss. I think I even sent you an email with my sympathies.(I had a stillborn son as well) Small world. Your boy is precious.
Cathy Pepin
Happy Anniversary! I hope you have a beautiful and wonderful day to celebrate it in with your adorable son! The picture from your wedding is stunning.
I am intrigued and look forward to checking out target (they don't have any in my area and I have never been to one)
I forgot you and Matt got married on my birthday. Happy Anniversary!!! Beautiful picture! Don't worry about Jonah liking Target, when he gets a little older he will love it too. He is a little too young to appreciate it now. Look forward to receiving my magnet and displaying it proudly. Love, prayers and Happy Anniversary wishes heading your way.
Happy Anniversary! I am a Targetholic also, I heard that Greenville's getting a Super Target and I just can't wait! I go to the Durham one all the time when I'm at college. Which by the way -- I'm honored to have been your student for 2 of the 4 years you taught (4 years for TF maybe?? haha, which, thanks to you, I also am!) and without your 2 classes I would not have gotten the A's in my Spanish classes at UNC... oh Patrice, I love you! And I love your little Jonah too!
Happy Anniversary!! My DD did not like Target one bit when she was little, so hopefully Jonah will outgrow it too. I kept thinking maybe it was just sensitivity to the color red??
Greenville's getting a Super Target?? Had no idea! Wait, what is it? All Targets are super to me! :) Happy Anniversary you guys - your wedding was lovely - seems like just yesterday...
So, I've been a blog lurker since the beginning. I'm blown away by the megaphone you are using to shout God's grace in the midst of trying times. I was drawn to your blog because my little boy is also Jonah. But, I finally came out of hiding to say that 10 years ago tonight I just finished my rehearsal and 10 years ago tomorrow, I too, married a wonderful man! So, here we are with wonderful lives and precious little Jonah's!!
nicki glenn
My name is Rachael and I am a Targetaholic. I can say that happily with no intention of ever changing. The only thing better is SUPER Target! I love to visit my sister in San Antonio because there are Super Targets everywhere. My son is 9 and he begs to go all the time. He loves their toy section. My daughter is 17 months old and she loves to look at all the pretty dresses and cute toys.
Happy Anniversary! Here's to many, many more!
Happy anniversary, M&P!! Looking at that picture really took me back ... Nathaniel was just a couple of months older at your wedding than Jake is now. WOW. I remember how stunningly beautiful your flowers were, that it was FREAKING HOT, that we had such a great time under the white tent, dancing, photographing, eating, watching the kids (well, mainly mine!) playing in the big tin tubs that held the cold drinks. What a fun, loving occasion it was. Looking forward to the beach more than you can imagine! Just 6 weeks!
Happy Anniversary! What a road you guys have already traveled in the 5 years you've been married.
Thank you for posting the list of things that you guys need. Is it easier for you to recieve these things in the mail, so you don't have to go out and buy them? Or is it esier for us to donate money, then you can get what you need (at the time)?
I would be happy to contribute for the things needed to care for your sweet Jonah.
I totally understand your wanting Jonah to have the social part of daycare but being interested in homeschooling. My kids go to public school and I wish so often that I was brave enough to home school. I disagree with so much that goes on in the school and we actually have a wonderful school district. I can't imagine what I would do if we didn't. Hug's to you, Matt and baby Jonah. I hope you have a wonderful Anniversary!
What is it about Target that makes us mom's so happy... and yet kids can't stand it. My 4 year old does like the popcorn there. Not that I would ever buy him any.
I don't think I've commented before but I check your blog on a regular basis. I love checking on your little boy. He's so precious!!
Happy Anniversary! Love the sweet picture.
On a side note-- For the last few years we have lived in a very small town with a Walmart but no Target. The nearest Target is 2 hours away. So Sad... :)
Happy 5th Anniversary!!
Many blessings to you!!
Beautiful wedding picture!
Thanks for letting us get to know you better. Still praying for you everyday!
Luann
That is a beautiful wedding picture! Have a great anniversary weekend!
Five years? Congratulations! What a beautiful picture.
Cxx
i do so love these assortment blogs! :)
happy anniversary!
:)
my one year is sunday! YAY!
i'm with jonah and do not care so much for target, but i care even less for walmart. i am a macy's girl :)
and if we want to send you some of the things on the list, we just collect them and send them to the p.o. box?
Happy Anniversary!! Over time and with enough trips (especially once he's old enough to appreciate the toy section), Jonah will come to love Target, too...never fear! Hope ya'll have a wonderful anniversary!
Happy Anniversary, you two! Don't worry Jonah will grow to love Target, and if we're lucky, he will like the colors red and white...Rob asked me to put that last part in there! Love you all and hope you will have a wonderful day.
We leave for the beach this next week, but Ethan's PT goes to Pinedale (April Snyder) with you. I plan on sending aquaphor with her. How many tubs do you need? We use the healing version... is that what you use? Would you like me to add a tube of Sween 24 for you to try? We really love that for Ethan. (our goals with skin care may be different though... you may need more protection vs moisturizing). I'd rather send it all through April if I can because it would be so heavy to mail. beepbeepinajeep@ichthyosis.us
Congratulations on 5 years! Hope that you have a wonderful day!
So excited - Can't wait to get my magnet!
My boys aren't big fans of Target either - maybe they'll grow into it? Probably not.
Beautiful bride!!! Glad to see you feeling well and finding humor in the craziness of life. Humor is most definitely a gift from God!
Oh, I LOVE Target AND the Office!!! Have a good weekend,
Daisy (alabama)
Beautiful wedding picture! Happy anniversary!
About the school issue, even though you have plenty of time to think about it. (Not as much time as you think, though.:) I taught public and private school and my youngest daughter will graduate from public next May. If I had it to do over, I would do private CHRISTIAN school! Unfortunately, around here the church run schools are not up to par (educationally) and the private schools are $4000 - $6000 per year, per kid. =(
Happy Anniversary Soon! Surely, Jonah was just having a bad day and doesn't hate Target!
Happy Anniversary! You and your husband have been married almost as long as my husband and I! We celbrated 4 years on May 6th! May you be together for many many more!
I had a question, but forgot it, so if I remember I will post again!
What a beautiful picture! Thanks for sharing!
Hi Patrice!!
Well the first step to recovery is admiting you have a problem... :)
Just FYI, you were mentioned on MckMama's The Blog Frog. People around the globe think about and pray for your family daily! You guys are doing a great job!
Happy Anniversary! :)
Jonah just must not have realized where he was at because I'm certain that would have made him happy right away!
I checked out the support blog and added it to my list - I didn't have time to catch up on all of it yet, but it looked good! - and I got a magnet - I like aqua - but I even like Carolina blue ;)
Praying you & Matt get to celebrate you as a couple this weekend. How wonderful that God brought you together!
Blessings!
I don't know if I've ever commented before, but I've been following your blog since MckMama first mentioned it!
I was home schooled from birth til my Junior year of high school. I plan on home schooling my children for as long as my husband will let me (we're discussing until at least 5th grade). I am a HUGE home school supporter. Socialization does not have to take place in a public school background!!! If you ever have any questions (I know, it's a long way off!) please feel free to email me, or visit my blog. I randomly do posts about Home schooling!
I wish I were a Targetaholic... sadly, we don't have very many near us, and none of them are Super Targets! It's very disheartening!
Happy Anniversary!!!!!!
I'll share my wedding verse with you- it has been a mainstay in my marriage with the things that we've gone through as a family- and I feel it would be appropriate for your family, as well:
Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.
~Em
PS. I am also a Targetholic suffering from withdrawal- ours was torn down February 2, and is currently being rebuilt as a super Target. the next closest thing is...ugh...wal mart. Sad.
Happy Anniversary - Your wedding in such a lovely spot was the perfect beginning of a family into which Jonah was born. Your home gives him the very peace and calm you two must have felt in the outdoor venue you shared as you gave yourselves to each other and ultimately to Jonah.
God Bless
Aunt Joyce aka Mimmy
http://www.mimmysmoments.blogspot.com
Too funny... today is my 5 year anniversary too! Congrats!
My dad lives in Burlington and he said the Target in Burlington is going out of buisness!!!! Darn those Walmart stores!!!
Happy Anniversary! I have a couple of questions myself...can you kiss Jonah? Also can you hold him without the blanket? Can you give him gentle huggie squeezes?
Praying for your family everday in Hixson!
Happy Anniversary today! I know at least 5 people (including my sister) who got married 5 years ago today! Hope you guys enjoy your day! As always, we are praying for Jonah!
Hi Patrice -
I have followed your blog since Jonah was born and have only posted once before. I have some medical supplies that my son used that we no longer need so I am sending them to you.
I am sending hand sanitizer, 25g needles, and alcohol swabs.
Do you have any need for toothettes (the little pink mouth swabs) for Jonah's mouth?
Email me at raisingwrestlers@gmail.com.
Stephanie
PS..I am a targetholic too!!
You should really start using liners with his diapers. The Aquaphor unfortunately will build up too much in his diapers, even with stripping. You can use liners that you make yourself, it can be very inexpensive. I would not wash the liners with his diapers though if they are covered in aquaphor. You could try using Northern Essence diaper cream or a diaper safe ointment. I just don't want to see you have to deal with repelling diapers. It is quite the process to truely strip diapers.
Beautiful picture - beautiful day.
I was just thinking about your wedding the other day.
Much Love
Patrice,
We are going through our EB supplies and wondering if you use the conform stretch bandage rolls and if you use sterile cotton swabs. We are sending you some of the things on your list but wondering if use you those 2 things. You can let me know at nyesda@hotmail.com
Happy 5th Anniversary!
Tashia Uken
Confessions of a Targetaholic (but an infrequent one because of the hour-long drive to get to one).
List: diapers, toy mule, zebra cakes (strange list, I know)
Purchased: diapers, toy ponies (apparently mules are hard to find!), gallon baggies, kids puzzle, zebra cakes, snickers bar, 2 cans of coffee, and whatever else my husband grabbed that I didn't see!
That was fun - thanks! I might do it on my blog, but not regularly since we only get there a few times a year. :(
this post makes me super happy. I think it's awesome how God brings people together. and I think it's pretty awesome that I went to school with you both (matt and I go back to elemen) and cheered with you:) What a beautiful testimony.
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