Remember these cool sleevies (made from baby legs) that we fashioned for Jonah when he was in the NICU?
Well, today they got further mutilated into car seat strap covers.
They were too wide to go over the straps, so I had to wrap them around the straps. And then the problem... how to attach them? I do not sew (seriously, I don't even know how to reattach a button). I am not a creative problem solver. Jonah would not sleep at all this morning, so I had very little time to figure anything out.
And so...
I stapled them. That's right. Staples. I wrapped them around and stapled them to themselves. I just made sure to put the staple side away from Jonah's face. Not the best solution, but one that worked for today at least. I do have a set of strap covers from Babies R Us, but they have a thick trim on them that rubs too. So for now, I'll use my not-so-sophisticated concoction until my pretty, not stapled ones arrive.
As for the appointment, it was uneventful. Dr. M said Jonah looks great and was really happy with his growth. He didn't have us unwrap him, since most everything that's covered with bandages is clear right now. His face and hands are the worst, and obviously he could see those. One thing (bad? good?) is that he noticed Jonah has milia (those acne looking little bumps newborns sometimes have). Anyway, it's common in some forms of EB, but apparently not in Junctional. He said it's more of a Dystrophic characteristic. That scared me very much. He said that it's not necessarily a bad thing. It just means he's a "deep Junctional." He said not all Dystrophic is bad and that a mild Dystrophic could get better as one gets older. I immediately asked him if we needed to be wrapping his fingers individually... if we were worried about the webbing and contractures associated with RDEB. He said no. So Jonah is Junctional, but is obviously not perfectly typical. I have no idea what any of it means. Maybe it's good. Maybe it's the same. Maybe it's bad. He also said something about a Junctional he used to treat that leaned more toward Dystrophic. That person had the webbing and contractures though, I think. And he died of skin cancer in his twenties. So... I have NO idea.
Pretty much all we know is all we've ever known. Jonah is probably Junctional non-Herlitz, but is not classifiable. He's most likely a "deep Junctional"... whatever that means. I don't know what to think.
I think I'll just keep looking at Jonah... his beautiful self and how well he's doing is the only prognosis I need.
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I have a question:
Does anyone know of anywhere around here that has a pumpkin patch on a farm? With maybe hayrides? I've found some a couple hours away in either direction, but nothing close by. Any ideas?
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Okay, I have to go now. I'm trying to watch Grey's Anatomy AND blog, and it's virtually impossible. And the drama continues...
34 comments:
Aren't uneventful appointments nice? We like them around our house too. I like you attitude about just looking at that sweet face and enjoying how well he is doing.
There are a couple of places in Alamance County. Iseley Farm and Union Ridge Church. My daughter used to see Dr. M at UNC. He is an awesome doctor.
I am so glad your spirits are higher this week.
Jonah is such a sweetheart.
pumpkin farms kind of close by:
Ellen James (336) 998-5805
www.hiddenhorsefarm.org
Mocksville, NC
AND
http://maizeadventure.com/
High Point, NC
Hope that helps!!
~Amy
glad your appointment was uneventful. hoping as jonut grows older more answers will come your way. i've been following samantha sheridan's story with the BMT. scary stuff, but it looks like she's getting some results. . .although much is to be determined. i hope your little guy gets a less scary answer to your questions. praying for all of you!! and for the "gushers."
He has grown so much! I like it when the pictures are right together like that and easy to compare! Glad things went well at the doctor. Don't hear what he didn't say. Just wait and trust God. I am still praying. God bless.
It isn't a farm, but Jamestown United Methodist Church in Jamestown (311 to Greensboro road, L on Greensboro road, go straight until you get to Jamestown...church is on the lt) has a pumpkin patch and they do hayrides for preschool classes every morning. The tractor just goes around teh parking lot and through the church grounds but I could get you out there where you could probably ride the tractor alone (it is covered in hay bales) so you wouldn't have to worry about germs. They also usually have parts set up with hay bales to do pictures and stuff. I took a group of friends last year and we got some great pictures! Let me know if you want more info... lauren p richardson at hotmail dot com
Tanglewood does this--at least they did last year! Here is their phone number--it is a lovely place and close to you.
778-6300
karen in clemmons
Please, please, do not freak about the milia. Carson had tons of them. I realize that he has EBS and is not facing the same things as Jonah...but just to say that they DO occur in other forms of EB, not just dystrophic.
As far as the straps on the car seat, I loved the ones we had for Carson...they were soft, plush, and Elmo - no seams. If I find some like it, I'm buying them and sending them your way. I recall that you have a family member or friend who has made no-seam clothes for Jonah, so....for her...the strap covers should be a snap (pun intended). :-)
Kristy, mom to Carson, 6 yo, EBS
Every time I visit your blog, I'm just blessed by your perspective and you beautiful love for your precious baby. Jonas is just beautiful.
Lynnette
Dancing Barefoot on Weathered Ground
I chuckled at the part about you using the stapler. It brought to my mind the Three's Company episode where Janet wanted to wallpaper her & Chrissy's bedroom. Chrissy did NOT want to wallpaper explaining that she'd always had bad luck with wallpapering.
"Last time I wallpapered," Chrissy said, "it pulled the staples right out of the wall."
Janet asked, "WHY did you use STAPLES?"
Chrissy replied, "Because we ran out of Scotch Tape!"
hahahaha
Patrice, I hope you don't wallpaper! :O)
Have fun in the pumpkin patch!
Michelle Found
Picton, Ontario, Canada
www.fiddlersfound.blogspot.com
if you were here in western washington, we have pumpkin patches and corn mazes all over the place, literally a few miles from downtown seattle. come on out :)
glad to hear jonah is doing so well and that the doctor is pleased. i am sure this makes you and matt feel better too.
blessings, mari
Hi Patrice! We love the Maize Adventure in High Point. It has pumpkins, hayrides, and lots of other stuff too explore too!
Blessings!
Blogging during Greys????? Doing anything besides breathing during Greys??? I've never heard of such a thing??? LOL J/K. I've been looking forward to Greys all summer. Now I just have to get through Private Practice next week and I'll be good.
Glad Jonah's appt went well. Looks like God made him so perfect that can't even fit him into a class--how totally cool. I hope things keep sailing snoothly for him, and that on your bad days when you feel defeated--that yu feel our prayers and God's grace and mercy helping you get through the day.
Oh, and I totally laughed my toochie off when I read Mr. Barfy Mckpukepants (is that right?) last week. Too funny!!
I'm loving how great his face looks right now! He looks amazing. Love you so, so much and want to talk to you soon. I hesitate to call when I know you've got so much to do, but I promise I will call soon! Love, love, love to all!
I loved greys tonight! great idea using the sleevies!
Just have to tell you that your baby is beautiful!
I think Tanglewood does hayrides, and maybe you get a pumpkin at the end. We always go to Hawks pumpkin patch, it's on Clemmonsville Rd, near the Stratford side. The people that run it are SOOOO nice!
I have a ton of milia - my derm told me that its just a malformation of skin cells and nothing to worry about, but DO NOT pick at them b/c that will cause blisters.
Also - I have recessive and I don't have any webbing at all. I really think that all types of EB are case specific, meaning its going to be different in every patient.
Please don't worry.... he is doing AMAZING!
Janel
Kersey Valley (I think you can google it) has an amazing corn maze, pumpkin patch, and hay rides. It is in Sophia, which is between High Point and Thomasville. Oh, and if you haven't tried Lazy 5 Ranch near Salisbury, it is awesome!
My kids and I pray for Jonah every night before we go to bed. They always request prayers for "the baby with the skin blisters".
He's beautiful and I love seeing pictures of your sweet boy. Have a nice weekend sweet family and I'll keep praying for little Jonut!
Ok, so I sent you an email about being in Chapel Hill and not letting me know. Seriously. But, we should look into a pumpkin patch / hayride that's between W-S and Chapel Hill. It'd be fun to do it together.
Jonah is beautiful, just as God made him.
Dear Sweet Patrice:
I am saying a special prayer today for you and baby Jonut (and Matt)! Even though the clouds outside seem to bring gloominess and dreary thoughts, I pray that the awesome sunshine of His Love will shine in your hearts and home today (and through those big handsome blue eyes:)! And even though each day, each doctor visit, each event brings few answers to the numerous questions you may have, may you find comfort in knowing that Father knows...He sees ahead and may you find the strength to just trust...even though as I write these words I don't quite know how you can do that...my Father's Word says "I can do ALL things through Christ who gives me strength." It also says the He will keep you in perfect peace if your mind is stayed on Him...don't want to preach, just encourage and send a lot of love and prayers your way today!
In His Great Love, Aimee Pence
Jonah is beautiful. Definitely be thankful for the progress he has made and the progress he will continue to make. Try not to dwell on the unknowns and bad things. Enjoy having him a part of your life as I am sure you do. You are such a strong person, much stronger than you give yourself credit for. I know there will be days when you can't see the beauty of the day but that is why you have us fellow bloggers to lift you up and let you know that you aren't alone. I think Jonah is beautiful inside and out. Hugs
Hey! I haven't commented in a while, but my daughter has Dystrophic EB (not sure yet if it is recessive or dominant), but she has lots of millia on her hands and feet. But, her DEB is extremely mild. In fact, if you didn't know us, you probably would never even know that she has it. So, like the others said all cases are different. And I am always so impressed and amazed with how well Jonah is doing! GOD is awesome and even when times are tough, he will never give you more than you can handle! You are one tough cookie! I don't know how you do it!!
Instead of staples could you use 2sided tape?
Glad his appointment went well! If it makes you feel any better, both of my girls had the milia until they were almost one. You could always see them around their noses. Just little white specks. =)
You don't know me ...just recently started reading your blog. I love that you keep it real!
My son had GERD horribly from birth until 2 years! He had gushers anywhere from 5-30 times every day. It was so gross and so frustrating...I don't know how you do it with all the dressing changes. Hang in there! I think and pray for you and your family every day. So glad I found your blog.
Brook
Last year we went to Alpha Acres in Yadkinville. It's a Christian based organization to support the Rescue Mission. The kids really enjoyed it. www.cornfieldmaze.com/sites.php?ID=&username=ncwinstonsalem is the website for more information
It is so good to "hear" happiness in your "voice" again. It is also good to hear that Jonah had a report from the dermatologist appointment. You are absolutely right to just look at his face, his beautiful, wonderful, happy face to make your own diagnosis. If have a complete diagnosis won't change the treatments any then just don't worry about it. God is going to take care of Jonah no matter why type of EB he has. Take care, have a super weekend and remember I love you to Heaven and back.
God Bless,
Mimmy aka Aunt Joyce
There is a pumpkin patch on Clemmonsville Road near Jonestown road & also one on Jonestown Rd at a methodist church between the bowling alley and 158.
Neither of these have a hay ride but Faith Missionary Alliance has a fall festival on Oct 21st (I think) and they have a hayride!
Krystal
So glad things went well at the derm! We saw Dr. J in genetics at Baptist this week & we LOVED her! She is great:) We are going to do DNA mapping test at the end of the month to see if we can get any clearer answers to the form Ethan has. I love the most recent post too about your sleep deprivation! ;) Very funny stuff!
I made a makeshift strap cover in my husband's car for myself by wrapping a cheap, thin washcloth around the strap twice and pinning through the end/overlapped middle/end on the upper side of the strap (away from my body). I keep meaning to go sew a simple basting stitch (think long stitches) catching all of the layers so I can take out the safety pins and have it more stable and smooth. It's just been too dang hot around here to want to sit in a car and do something for more than 10 seconds. Due to Jonah's delicate skin, I wouldn't suggest having something like that put together with Velcro. I'm sure you know that way better than do I!!! Hugs!
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