It was a good weekend. The kids spent most of their time outside playing baseball. Grant is going to be quite the player, I think. He was hitting them over the fence, batting both ways. Abby is quite the tennis player, and I can't wait to see her play sometime when we travel to NY. And Will (at the age of 3 1/2) is quite the numbers whiz. At the PA state line on the way back, he said, "I want to go see Jonah again. Take me back to four-zero-one-zero (our house number)." They are great kids, and we miss them very much. We'll see them all again July fourth week when we head to the beach for our annual trip. (We had thought about NOT going, but we've decided to give it a shot - even if we end up not being able to be there all week - taking shifts being with Jonah inside. The house we stay in is always very cool.)
I actually didn't take that many pictures of the weekend, but here are the few I did snap.
Kim, the kids, and Jonah.
Silly faces.
We have our appointment with Dr. M, our dermatologist, tomorrow in Chapel Hill. He has several EB patients, and I'm excited to finally talk to a doctor who knows more about this disorder than I do. I have a LONG list of questions, but I hear he's just great. I'm sure it will be a very informative visit. I must admit, I'm a little worried though. It will be the first time we've taken Jonah anywhere but around here, and I'm sure there will be a lot of wrapping and unwrapping of his dressings while we're there. As much as I like to get out, it sure is easier just to stay home.
Oh, funny thing. I had to go out yesterday and get some breast milk storage bags, because I was completely out (I went with Gerber - half the price, larger size so last twice as long). Then Matt comes in from work and has about eight packages from our PO box. I think six of them were milk bags. :)
Thank you guys gals so much! Now I just need a chest freezer to keep all this milk in. It's outta control. And believe me, when the freezer is so full that bags of milk are falling out and crushing your toes, it's not fun.
46 comments:
I am not sure I have ever commented but I read daily and have followed you all since Jonah's birth - God Bless you all, he is precious and you all rock - total inspiration to us all!!! Anyway, I also love Lilly Pulitzer (a clothing line) and I just read online that she launced a new line to benefit what I believe to be is EB...just thought I'd pass that on for you to read about. Praying for you all daily and if I coiuld send you a freezer from IN, trust me I would. Maybe someone local would donate one to you all for your new basement (and fill it with ready-made meals too!!!).
It is so hard to keep up with the pumping as he gets older so having tons is storage is awesome!! I remember when I was pumping, at fist I had sooooooo much extra milk it was crazy! Then it seemed out of no where my wee one wanted more than I could pump...the stored bags became liquid gold!
Hi Patrice,
I pumped a lot when my daughter was born and soon my freezer was full of milk! I discovered a great way to make use of the extra milk is to donate to a local milk bank. They use it for babies that are premature and it's a great feeling to help out another mom and baby. I'm sure you could ask your pediatrician or contact your local hospital to find out where you can donate. I haven't mailed my milk bags yet, but I will soon! I'd love to buy Jonah a Fuzzi Bunz too, my daughter wears them and I am thinking about getting her a few more. What size is he wearing now? Would you be able to accept a diaper as a gift?
Ronda
Jonah is so cute. I pray for him and your family every night. The other day, I was reading my gossip on people.com. They had an article on that Elizabeth chic from The View and she was attending a fund raiser for EB. Your story has given me an awareness of EB which I had never heard of before now. God bless!
Sorry but, the term "chest freezer" made me giggle:)
(Cuz you're buying it for breastmilk)
PS...I exclusively pumped for 6 months and I had long conversations with my Ameda.
PPS...My word verification is "trick!"
Patrice,
i am so glad you have a wonderful supply of breast milk for baby Jonah.. You are doing the best for him. Keep up the awesome work and enjoy your beautiful baby boy...
Jonah is such a handsom little man. And, Patrice, keep on keepin' on. You are such a great mom. I've had three failed pregnancies and am now focusing my thoughts on living life childless (because I'm quickly approaching 41 years old). I admire your strength and determination. No matter how difficult things may seem, you have such a beautiful son to raise. Stay strong and know that I pray for you all DAILY.
Sorry, couldn't resist...had to laugh that you are storing the breast milk in a "chest" freezer!
Jonah is too cute.
You might want to try stacking your frozen milk in gallon size ziploc bags. I discovered this worked really well when I was pumping for my little boy.
I've been following your blog for a while now and think Jonah is just adorable. You are blessed!
I have followed your blog since shortly after Jonah was born but never commented..he is such a cutie!
I give you tremendous props for doing what you guys are doing (not that there would be any other way as a mom myself!). Also kudos for continuing to pump..my little guy couldn't breast feed either and I gave up on the pumping. It takes alot of strength to give Jonah the care he needs and sacrifice yourself too! You are a commendable woman!
I will keep you all in my prayers!!
Just thought I would chime in on the Lilly Pulitzer comment. You can go to www.ebkids.org to see more info on it. Also, you can see the Satya Butterfly jewelry that Courtney & David Arquette inspired. Beautiful!
I am so glad to see(read) you in better spirits Patrice! I think of you, Matt & Jonah daily :)
i haven't been around in a few days. ohmygoodness he is downright adorable!! he's really growing up and he is such a little chunk! i think he's the most precious baby. i am hoping the beginning of the warmer weather won't be too uncomfortable for y'all.
take care and good luck with keeping your toes safe!
Hey Trice
I love to see these pics. I know it's only really been two days since I've seen him, but Jonah looks so big in the ones from this weekend. What a cutie! Can't wait to see you guys tonight!
Shannon re: chest freezer made me laugh.
Amanda re: frozen meals made me smile.
See you in a couple of days!
Know that our Bible study group will be praying for Jonah tonight. He is really growing and looking more like his mommy every day. Tonight we will pray that his meeting with the dermatologist will go well. I will look forward to reading your blog entry to let us know how well he is doing.
God bless,
Sandy W.
Chest freezer...falling milk...ok, now I'm smiling for the first time today! Thanks for the update and I love the pics. I showed my mom the pics of Jonah over the weekend and she was so taken with his precious face and eyes. We are praying for you and I hope your vacation will work out. You need it!
aww, how fun to have Jonah's little cousin's meet him!
blessings on the Dr M trip!!
I am thinking here is some kind of pun in the "chest freezer" comment, but I can't pull it out of my head right now. We are thinking of you and praying still. Traci GCOC
I have never commented on your blog, but I have been reading regularly and I have shared stories about Jonah with my family. My daughter, who is 7, is sitting here beside me tonight looking at your pictures and reading about Jonah. She said, "Mom can I leave a comment and tell them that I am thinking about Baby Jonah and that I am praying for him?" So, here we are to let you know that our family is thinking about and praying for Jonah...especially my daughter, Kenzie. God bless!
Praying that the doctors appointment goes well tomorrow!
The chest freezer also made me giggle!
I'm a new reader and have to say, like the others, this post made me giggle. Jonah is absolutely adorable!! You, Jonah and your family are in my prayers.
Ok, this is kind of random but is Matt's sister married to Andrew, as in Andrew Tucker? I thought I saw a pic of him a while back but wasn't sure. If so, Andrew was my YL leader at Mount Tabor (waaaaaaay back in the day) and he was INSANE. In a good way :) I'm so glad that Jonah has a crazy and wild uncle like him. Tell him Leslie Unger said hello...
Praying for you, Matt and sweet Jonah every dang day!
Hahahaha, we had to buy a chest freezer with my first, because I had so much milk pummped, I am glad I wasnt the only one!! Plus the milk lasts longer in a chest freezer. So its a good investment IMO.
Praying everything goes smoothly at your dr. appt.
What a sweet problem to have! Breast milk falling out! Look for a used freezer. They are out there. Harder to find with the economy but WORTH it. I spent my "beach money" one year on an upright and promptly froze breast milk in it. He turns 9 on Saturday (so does the freezer I guess!) and he was worth all the sore toes! Praying for your appointment and for the wealth of info that you will gain. You probably won't read this until you are back but take a notebook and write while you are there. Or maybe even tape record it to hear again and again! Praying for you, sweet family! Jennifer in Southeast, NC
Chest freezer - hah!! Too funny!
What sweet cousins! Thanks for sharing them with us.
Will be praying for the appointment tomorrow, and that any dressing removals will go as smoothly/pain-free as possible. And always praying for healing!
Love,
Laura in TX
Hello! I came across your blog the other day through someone who left a comment on mine. Your son is so precious and beautiful! I had never heard of EB until your blog and I hope you don't mind I shared your blog with my friends to help raise awareness.
Hello Patrice! I have to tell you this story. I was looking at your pictures 2 days ago and my boys (12 and 10) walked in the room. They immediately asked if the baby on the screen was burned. (they know all about burn victims, since their sister was one)I told them that he wasn't and explained about EB as best as I could. We have a prayer tree in our school room (I home school)that has apples on it with names of different people who need prayer. So the next day I walked into the school room and sitting on my desk was an apple, (they are paper cut-outs of apples) and on it this was written... Jonah, his Mommy and Daddy ~skin. I wanted to cry. I really didn't even know that they had paid much attention to what I was saying about Jonah. So.. Jonah has an apple on our prayer tree and the apples always stay on the tree until the prayer has been answered. You now not only have me prayin' my bottom off, you have my children praying for you too! So, I hope his apple falls off real soon! Love from Mexico, Missy
Your son is a beautiful baby!!! i was wondering if tea tree oil would maybe help heal his blisters? or maybe pure vitamin E oil from health food store? I know Tea Tree oil heals all our scratches and wounds overnight!
Try searching on www.craigslist.com for a free or cheap chest freezer for your breast milk! We got a very gently used one for only $15! You can also try www.freecycle.org for things people are giving away! Good Luck!
So very glad to know that you are going to see the dermatologist tomorrow for Jonah. I am praying that it will be a help and encouragement to you to have Jonah in his care.
Thanks so much for all the pictures you post! I pray fervently for you all!
I think it is great that you are still planning on going on that trip! I will be praying for that too!
Blessings to you!
Luann
I have been following Jonah for some time now and I just find your strength incredible. I think I have commented on here before, but cant remember for sure. My son is an ex 23 weeker and was 1lb 3.5oz at birth. He is now 9 months old and a hefty 15.5lbs. I just want to commend you on pumping so much BM. That has to be absolutely the best thing for him. I am still pumping after 9 months and its coming to an end but I think you will find it very rewarding! Great job!
Hey, hey, hey now....did we forget to celebrate Jonah's one month anniversary of being home from the hospital the other day?!?! Congratulations, Patrice and Matt!
May the Lord continue to bless you always.
Love and prayers from Texas,
Elizabeth
Praise God...how wonderful you had all those donations. I keep praying for that sweet little boy of yours and glad to hear you're taking your vacation...it will be good for your heart and soul!
hope the trip to chapel hill went well and that you got all of your questions answered. can't wait to hear about the update!
Investing in a chest freezer would be well worth the money. I was able to pump and store over 500 bags (yes, 500!!!) of milk for my daughter. Plus it's nice to have more freezer room anyhow. Praying for you all in WV.
I started putting the BM bags in larger ziploc bags to group them together by month and help prevent them from falling all over the place. I'd mark the month/year ont he bag and then I could easily find them to use them before they expired.
Some people also talked about putting htem in bin containers to stand them up and keep them neater.
It'd be great if you had enough to donate to a BM bank!
(package going out today!)
I just learned of your blog and I am hooked. Your family has already become an inspiration to me. I look forward to hear more & more about your precious son as he continues to bless this world.
God bless!
Many blessings,
Allison
Hello - I have checked in on you all numerous times since I met you at Brenners. I am glad that things are going well & we will pray for good news at the Appt with the specialist. God has a plan we just have to have faith. I just wanted to let you know that I had a ton of breast milk too and there is a milk bank at Wake Med in Raleigh and they are ALWAYS in desperate need for breast milk. I donated all my extra milk there & it was such a great feeling to give it to sick babies who really really need it. I just wanted to let you know about them. It is a wonderful organization and there was an article written in the Oprah Magazine in March about them. If you have tons to spare please please donate to the milk bank.
Nancy Woodyard
Sorry to write again... but you may want to check Craigslist OR Freecycle for a freezer chest. Freecycle is great because EVERYTHING is free! You just have to pick it up.
Many blessings,
Allison
I have been following your blog for several weeks now and read every post about Jonah- from day one. You are so often on my heart and I pray for you when God brings you to mind. Isn't the body of Christ so amazing? By now, you are probably already in CH but I wanted to let you know that my husband also sees Dr. M (for an unrelated dermatology reason). When you mentioned he was a doctor you would be visitng, I told my husband and he commented on what a great doctor Dr. M is. A very kind man. I hope the visit goes well and that you are able to get some answers to your long list of questions. Crazy to think you will be so close to where I am today! Maybe God will allow our paths to cross one day. Until then, your family will remain in our prayers. Sweet Jonah is very blessed to have such a dedicated and loving set of parents.
Sisters in Christ,
Courtney
What lovely pictures!
Cxx
Hello! Jonah looks great!! I have a 19-month old in Raleigh with Junctional non-Hurlitz. I have wanted to reach out but I know how overwhelming this is for you. About an hour ago, I found out that Jonah alao has Junctional non-Hurlitz so I had to finally write. We are very excited to have another family in NC and look forward to meeting you all in the future! I wonder how your appt with Dr. M went today. He is great and I'm sure he had lots of info. I will keep this brief, I just wanted to say "Hello" and let you know that we are in the area and want to help with anything you need. I'm not very good at this blogging thing so please call or email me if I can do anything for you.
I looked again at Jonah's bath photos and noticed his foot! It's beautiful! What a miraculous healing! I'm praying for your dermatologist appointment.
Elisabeth
Try freezing them flat and then stack them in gallon zip lock bags-it works great and takes little space.
I know you and Jonah are totally wiped out. Have been thinking of your family all day, especially all the wraping and unwraping. Did you have to give him a bath tonight in addition to the day he had? Hoping all are getting rest?
From some comments sounds like the Dr. is highly recommended, hope he answered all your ?'s
2shoes
What a cutie!!! Still reading your blog and praying for you.
By the way... lots of people put you on MckMama's blog post about prayers! You are popular!
Diana in GA
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