Just so you know...
I still don't think Jonah is rolling ... yet. I guess that picture was misleading. Sorry. He gets like that out of sheer kickyness.
He can't roll, but he's got the Kick the Legs Scooch Around Roll From Side to Side 360 mastered. We're so close to rolling, but that first photo below is the result of some serious leg kicking and side rolling.
Don't worry... I'll let you know when the big day arrives. :)
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Also, I will be on a radio show this Saturday (the 17th) from 2:05 - 3:00 pm. It's a show done locally called Encouragement Cafe. This Saturday's topic is blogging, so they've asked me to come be their "in studio" guest. Boo Mama and Big Mama will be calling in.
It feels weird to be considered along with them, as if I'm even close to being in their same blogosphere.
It also makes me feel like my blog and I need cooler names. Patrice just doesn't have much of a ring to it. Maybe I need to be Tired Mama or Overwhelmed Mama or Running Around Like A Chicken With Her Head Cut Off Mama... those are probably already taken.
Anyway, if you are local, the show is on WTRU, 830 am. If you aren't local (or can't catch it live), you can go to encouragementcafe.com and listen in. They will be airing it live (button in top right hand corner) from 2:05-3:00 pm eastern time, or you can go listen to the podcast (top left hand corner) at a later time. If you listen live, there is even a place you can scroll down and leave a comment or question.
I'm excited and only a little nervous. I guess after Walk to Remember this just isn't phasing me much. I like that I started with the more difficult (and very public) stuff first. Talking is not a problem for me, so I should be good to go. (Did I mention at Walk to Remember I was only supposed to speak for ten minutes? I talked for 25... oops.)
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And lastly, several of you have been asking questions in the comments lately, and although I read all the comments, it's hard to respond to specific questions.
So...
If you have a question for me about Jonah, EB, his health, or anything I guess (I reserve the right to NOT answer any question), feel free to leave it here, and I'll work on getting them answered. If you have posted a question in a previous post, please repost here, so I won't have to go a huntin'.
I also reserve the right to DELETE any crazy or mean-hearted comments... you know who you are. It's my blog and I'll delete if I want to. Delete if I want to. Delete if I want to. You would delete too if it happened to you.
Peace out, homies. Off to (attempt to) feed Jonah some yogurt/oatmeal/apples (and pretend like he's actually going to eat it).
Thursday, October 15, 2009
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37 comments:
Jonut is SO adorable, those pics below just made my heart smile all over again. I have a question...now that you have sweet Jonut...what would be your favorite date night with Matt where you wouldn't worry about Jonut at all because your wonderful family was taking care of him for you two to get out? Sorry to read about the lack of naps your little man has been taking and those gushers....oy vey...hang in there...here's hoping and praying each day gets better for you all!
You're too funny! You just delete away if you want to....Your blog simply has no space for mean-spirited comments, and that's a good thing! : ) Praying for you and your sweet Jonah.
I don't have any questions. I delete comments on my blog, too, though not very often. It is your blog and you are doing a great job with it. God bless.
Oh, I will surely check out the podcast!
Cxx
Hi Patrice,
I don't have any questions about the babe -- just continue to be amazed at his wonderful progress. Thank you for sharing him with all of us.
Also, you probably knew this already, but TODAY is the official Infant Loss and Remembrance Day. Everyone feeling led to participate is asked to light a candle for one hour beginning at 7 p.m. in their respective time zone...creating a continuous wave of light around the world! Read more at www.october15th.com. We don't 'know' you guys, but rest assured, your Gabe will be on our prayer list at 7 this evening...in Texas. :)
~Elizabeth
Maybe you've already addressed this before: Is there a possibility that Jonah can have the transplant done that Sam and the others have had? I don't really know how all that works, if it depends on the type of EB or what. If you have answered this before, you or someone else could link me back to the previous post.
Jonah is getting so big! He is such a cutie. It has been fun watching him grow and change.
I have a question: How will walking affect Jonah. Will his body and skin just adjust to the pressures on his feet? Will there be big blisters in the beginning and then eventually it go away?
I love reading updates on Jonah. He is so precious!!!
BOOMAMA!!!??? Wow - you're running with the big dogs!!!!! =) I hope it goes GREAT!!
YEA for you!! I'm so excited! Of course you know that The Mamas are two of my favorite bloggers ... and Sophie lives here in Birmingham and I've been to her house. I am thrilled for you and am NOT SURPRISED at all that you are included in such esteemed company. :) Love ya!
that is so neat that you will be on the radio..hopefully i will be able to listen in! and to the rude buttheads out there....if you don't have something nice to say..keep your d@%n mouth shut!
praying for jonut daily..much love and blessings ~erin
hey! first i just want to say that jonah is adorable and i love reading your blog! my question is - ive been following samantha's story and im wondering if a BMT would be something that Jonah would be able to do. I know its all in the very early stages of being tried out but it seems like the earlier you do it, the better...so is that something you can look forward to for jonah?
you don't have to answer if you don't feel like it but im just wondering if maybe this is the start of a real cure for EB?
have a great day!!!
Girl, you are awesome! Give yourself some credit every once in a while! :) My question is about what your needs for Jonah are at this point. I've bought my magnet which is proudly displayed on my car, I pray for you all daily, and I was just wondering if there is anything else you all need? Medical supplies? Any specifics would be great!
Terah
Just wanted to let you know that I heart your spirit. I enjoy checking in on your blog every day - to hear how Jonah is progressing, to hear how you are doing, or even to know what you ate for lunch :)
(PS - I don't read Big Mama or Boo Mama, so to me, you are bigger than they are - no offense, Mamas!)
I don't know you personally, though I feel like I do from reading your blog!! :) You do a great job!! I love reading!! In my prayers daily!
Kara
I also wanted to say I adore your blog - you write so well, your humor is so wry, it's such a joy to read. And Jonah is such a beautiful baby, thank you so much for sharing him with us!!
My question is, how are Jonah's hands doing?? I know you had decided to leave them completely unwrapped - how are they faring?
Thanks again for sharing!
Tamara, New York
You have a precious baby boy :) He really is SOOOO cute and his eyes are beautiful! My question is: Will Jonahs legs, arms, and body always need to be wrapped even when he gets older? He looks great and Im praying that his skin will heal!
Blessings,
Kelly
Congrats!!! I will listen to the podcast - you deserve it and what an amazing opportunity to share Jonah's story!
Hmm, a question, I guess overall, what is the one thing you'd want others to know about Jonah's EB? And what is one thing you'd want us to know about Jonah that is just about Jonah, has nothing to do with EB?
Patrice, just go on with your bad self...in my book your blog is #1. Your sense of humor, your honesty and your love of God & Jonah draws me to this blog site daily. And all those adorable pictures & videos of that sweet, precious baby ain' bad either (ha).
The Williams Family Blog is a GREAT name.
As far as Jonah rolling all the way over, is rolling side to side & scooting on his butt gets him where he wants to go. In the second picture you can tell he is so proud of himself..
As far as people being mean & rude I don't know what to say, but some people need to learn to keep their thoughts to themselves. If they don't like what you blog about why do they read it...delete whatever you want.
I will do my best to listen in on Saturday..lots of love, prayers.
You go, sister! Delete, delete, delete! Life's got enough "stuff" without mean-spirited comments. You rock, and I mean it! I love reading your blog each day sweet one. Hold fast....
I can't believe that people would be so cruel as to leave heartless messages, naivety i guess. You're doing a wonderful job, continued success.
You are SOOOOO right on up there with Boo Mama and Big Mama. You are Jonah's Mama and that makes you very, very special not only to him, but to all of us who have grown to love and admire you too!
Do you and Matt plan to have anymore children? If so, how will the EB gene play in affect?
Love your blog! I wouldn't change the name or anything!
Praying for you all daily!
I heart Jonah! Thank you for sharing Jonah with us!! I love watching him grow! I look forward to reading your blog every day. Jonah is lucky to have you! He is precious! Also, thanks for making me aware of EB. Until I started reading your blog, I had no idea EB even existed. Praying for you and baby Jonut!!
Just a suggestion: :Jaunting Alongside Jonut" (or Jonah) for a name. Or "Jonut's Jauntings"
God bless you and good luck on the radio!
I can't believe someone would actually have something mean spirited to say to you. I am just stunned. That makes me very sad.
I love you and I think you are an awesome mom!
From the weird stranger you have never met before who thinks you are her friend!
Big hugs and prayers! oh the pictures or so cute! I remember when my son used to roll all over the place like that too...sigh....
I think I have maybe mentioned this before but I was wondering if you could give us a little more insight to what you have to do for Jonah daily? Since you are feeding him, do you have to clean him with special cloths or something when you wipe that cute little face and hands. You have made me really think about the little things that I used to take for granted, such as wiping my sons face vigorously.
Thank you for sharing Jonah, he is so precious!
Thank you so much for sharing your sweet baby!
My questions - Can you "love" on him as much as you want, or do you have to be very careful with kisses and hugs? Can his skin handle rubbing and snuggling through the bandages? Can he grab and play with things without hurting his precious little hands?
You are such a terrific mom!
I don't know who in the world could come up with something mean to say to you, Patrice! That is just craziness. Anyway, I feel compelled to think of a question, so here goes: Where did you get your fabulous sense of humor from? Also Matt strikes me as the type of person who is more quiet and reserved. Is that a fair assumption, or is he just as witty and sarcastic as you are?
~Amy
I hope that your broadcast goes well! I was wondering if you have any early intervention therapists working with you with Jonah? I am a pediatric physical therapist, and there are facilatory techniques that can be used to help him learn to roll, sit, etc. He is a bit "behind the eight ball" so to speak, since his extremities are always bandaged, it limits or inhibits some of his movements. (Necessarily so, obviously; but therapy can help overcome this.)Infants and toddlers can come to your home. That is generally the name given to the 0-3 services that are available to all children via federal mandate. They are most often administrated by the local school district.
Anyway, I may be telling you something you already know, I just have not read anything about it in your blog. I love all the pictures, he looks like a happy boy!
Cool, you're famous!
I admire you and Matt so much!! Jonah is a precious boy with Godly parents who will raise him up to love Christ!! Praying your radio stint goes well. I have no doubt you will be witty and informative!!!
It's your party...delete away! I was trying to think of a question and thought of a post suggestion instead. I love the posts from Jonah's perspective so how about one from Matt's perspective? Give us some good dirt on Matt!! kara
I am still amazed that people have the nerve to write rude comments on others blogs. It is your blog, to write what ever you choose to write and if they don't like it they should not read it. Delete away, Patrice.
You are a wonderful mother and I enjoying reading about Jonah and your family. I pray for the three of you, even thought I have never met you. You have amazing strength!
How exciting about the radio show. I am not local, but I will listen to the podcast--even download it to my ipod and listen. This is so wonderful for you to do this.
Jonah is so very cute and simply looks adorable in the photo from yesterday on the blanket.
Blessings, Mari
I am intrigued by Sam's mom using honey on her blisters, and wondered if that would help Jonah at all? I guess you would have to wait until he is at least one year? I know you shouldn't feed it to babies any younger, but don't know if external use would have the same impact?
I love the picture of him looking so proud of himself!!!
I love your blog, how you're always real, no matter what. My question is this: What is your favorite brand/type of cloth diapers?
Hi Patrice,
I just want to introduce myself. I found your blog about a month ago. Jonah has really captured our hearts. My daughters, Ali (5) and Sammie (3) say, "Let's check on Jonah." every night during our prayer time. So, we check every night. We love the videos of him and we also think he is the sweetest! Our son, Josiah is now almost 11 months. He was born with a cleft lip and palate amongst other things. So they talk about Jonah and Josiah like they are two peas in a pod. =0) Just wanted you to know that we are praying for a miracle for Jonah, too. Thank you for sharing your life with us.
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