I made it to Whole Foods today. I asked the lady if they were always that busy in the middle of the day on a Monday, and she said that they were always busy and that it wasn't actually very busy compared to what it sometimes is. Maybe the aisles are narrow? Or the carts are especially big? Or the store is small? I don't know, but it seemed crowded to me. For some reason it made me kind of happy that all those people were trying to eat healthy or organic. Ever since I read this post by Lauren, I have wanted to buy hormone free meat. That thing about the chickens' poor little bones really got to me. I'm no food fanatic by any means, but man, thinking about those chickens has about converted me for good. I know they say "ignorance is bliss," and in some things I probably agree, but I'm definitely wanting to educate myself more about what I'm eating. I'm working up my courage to actually see Food Inc., because I know once I see it, there will be no turning back. And it sucks that you have to pay a butt load to eat decent food. Messed up, I tell ya. Messed up.
I can't wait til Spring when the farmers are all back out at the Farmer's Market. We live within ten minutes of it, and I know Jonah will LOVE strolling around there. And did you know that they have HUGE, beautiful bouquets of flowers for just $10? And they're way prettier than what you can get at the florist. If any boys read this blog (ahem, Matt), take the hint. Girls like pretty flowers... especially pretty flowers that are cheap.
I got a new phone today. Actually, Matt got us new phones today. He's been wanting a touch screen phone for a while now, and Verizon had a really good deal on the Droid Eris. So anyway, new phones. I keep calling the wrong people and have yet to figure out how to find my call history, but I'm sure it will get easier. And don't be expecting a text message from me anytime soon. I'm all thumbs.
And now, what you are all really here for - Jonah was in a pretty good mood most of the day. He enjoyed being out and about this afternoon. And he played a little bette on his own than he has been. I think his favorite toy is the little basketball goal Aunt Sarah got him for Christmas... or maybe it's just that it's just the right height and shape for him to be able to play with on his own. Many of his toys are either too tall or too wide (won't fit between his legs) for him to sit and play with by himself. Anyway, it's nice that he has at least one "action" toy that he can explore a little on his own. He had two gushers today. He puked up his entire 4:30 bottle, but, no worries, I thought, that will just mean he'll be hungry for solids. And he was. So I fed him some vanilla yogurt and a little chicken/sweet potatoes. I then let him try a bite of chocolate pudding, and that made him puke up everything. Again. I'm in a funk tonight because of it. I thought we were out of the woods with all of that. I mean, a couple nights ago when he started again, I thought it was just because we had put the protein in his bottles. But alas, it seems it may be more than that (although I definitely think putting the protein in there is a spew trigger too).
He's slept the past three nights in a row. Will he go for a fourth? I don't think he's ever gone four in a row before.
And I've been meaning to post this for a while, but it's mostly for my EB Peeps so feel free to stop reading here lest I bore you to death. We've gotten the results back for the first two tiers of Jonah's genetic testing. The first tier was to test for the JEB "hot spots" and looked for abnormalities in (on?) lam A3, lam B3, and lam C2. All normal. Tier two was a complete gene analysis of lam B3. Nothing. So then one of the "experts" at the gene testing place wanted to know more about his biopsy results / talk to the geneticist at Baptist etc before proceeding with further testing. So we released those to her, and we've all decided to continue with the normal sequence of testing. He's most certainly JEB (both of his biopsies confirmed this). The next tier, which they've just started, is a complete analysis of lam C2. If they don't find anything, the next will be a complete analysis of collagen 17 (which I think would be best case scenario as it would mean a milder case???). Anyway, the first two tiers of testing are where 70% of JEB kids usually have their mutations/abnormalities. So EB is super rare (we were told eight in a million although I've seen different figures), and JEB is 10% of that (.5 in a million), and Jonah is in the 30th percentile (or less!) of that. I don't even know what that makes him, and I'm just too tired for math. So anyway that's where we stand on that. I'm not really sure what all this will tell us, but at the least, we will already have it all figured out if we ever get to bone marrow transplant (or other treatment) time. And maybe it will tell us more about the severity of his particular case and/or prognosis? I'm just not sure.
Alright, that's it for me tonight. Sorry for no pictures again. Hopefully tomorrow.
Monday, January 18, 2010
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16 comments:
Whether he has EB or not, he's THE ONE to you & Matt!
Beckie in TN
The movie is definitely not for the weak of heart. There were several parts where Justin had to watch and tell me when it was safe for me to look back (and I plugged my ears, too... cause even if it's the nice scene of the happy, healthy farm, I still don't want to hear the chickens getting "prepared." if you know what i mean...)
But it's hard eating that way. It's so much more expensive. And even when you're trying, there are a lot of labels that are misleading or confusing and I'm about ready to do the contract thing with local farms to avoid grocery stores for meat and produce and eggs/dairy. We have a Fresh Market right down the road from us, so I've been making more frequent stops there and we spent one night just "browsing" the selections at other high end grocery stores that we normally don't visit (HT and Lowes Foods) and have compiled "our research." It'll probably be a blog post sometime mid-week when I have time to download pictures and write.
So in other words--good luck! Don't give up, and I can't wait to stroll down the Farmer's Market with you guys one day this spring :)
First - Lauren, thanks for the warning about the chicken video. I'm just going to take yours/Patrice's word for it! :)
Now...glad you made it to Whole Foods, Patrice! I like shopping there, but can't do it often because 1)it's about 30 minutes from my house and 2)it's really expensive! I agree with you- it makes me so mad every time I think about how expensive it is to eat healthy, especially for big families! So I just do what I can with fruits/veggies (some fresh, some frozen) and pray them through the rest.
Sorry to rant! I'm also sorry about Jonah's gushers. Will pray that those get under control (and that it really wasn't the chocolate pudding, because that boy needs him some chocolate pudding!)
Hope you all rest well this evening.
Love from TX!
Laura
Love you, lady. I've been thinking of you guys all the time, as usual, but haven't taken the time to comment on all of your posts. I'm loving the Tweets, though, and I'm happy you "joined up" on Twitter. Just one more way to connect.
Praying that there will be a cure for EB soon!
Hi Patrice
We live in Sweden and my little girl Elly had JEB. She is born 24/2 2009. We were waiting for genetic testing untill now. Hotspot, Lamb3 and Lamc2 were all normal. Then they finaly find the mutation in Lama3. They say it is a Herlitz mutation, so it doesn´t look good. But she had no problem besides the skinn (get). They say that it can be a "splicing" in the mutation IF she doen´t get wors. I know how it is to wait, but even if they find something they can never be 100% sure.
I love your blogg and I use to show Elly the pictures on Jonah=)
You are doing a great jobb!
Take care
Emelie
First of all, I HATE the physical layout of most of the Whole Foods stores that I have been in. The aisles are too small, so when people stop to make a choice, the entire system comes to a screeching halt.
I had a similar thing happen to me in regards to the quality (or lack thereof) of beef. I read an article in Mother Earth Magazine, and I could not eat beef for weeks after that. We now buy grass fed beef from a small "local" farmer. I drive about 2 hours one way, but we buy it in 1/4 or 1/2 of a cow quantities. This is MUCH cheaper than whole foods.
The meat is FABULOUS!! I have never had a pot roast as wonderful as the ones from these cows. You do have to plan ahead more for meals, as you cannot thaw the meat in the microwave, it can be thawed more quickly in cool water. And the steaks have to be tenderized and marinated. I can recommend some recipes and a great tenderizer tool if you decide to got this route.
These are two websites that I used to find the supplier I use, and then the article if you want to read it. Good luck with these changes!
www.eatwild.com
www.localharvest.com
http://www.motherearthnews.com/Sustainable-Farming/2008-02-01/What-You-Need-to-Know-About-the-Beef-You-Eat.aspx
Oh yeah, I got an I-phone a couple months ago, and I LOVE it!! I never understood the draw of a PDA, but now I do. I am gradually getting my calendar, all address and various other info on there. As well as I can check my bank balance when I need, check facebook at lunch (since work does not allow it!) and play fun games when I get stuck somewhere!
hey patrica! food inc. is wonderful & disheartening at the same time of course! BUT be glad you live right by that amazing farmers market b/c you can get a ton of local hormone-free meat there real soon! and it will be cheaper than wholefoods :) so i think ours boys should meet soon! how are they almost 1?!??!?
somehow i ended your name in an "a"..... talk about being all thumbs... not sure if its that or still mommy brain but love ya PATRICE!!!!
Ha ha, I upgraded my Blackberry to a Droid Eris after my hubby got a Motorola Droid. I had the worst time getting used to it and would randomly call people ALL.THE.TIME. But I've gotten better and now love it. Play around with the apps when you get a chance, there's some cool ones there.
glad you made it to the crazy over priced Whole Foods!! But they do have awesome stuff. I wish I could afford to feed our fam all organic but with 6 people to feed on a single income just can't happen. we do eat alot of deer since my husband is a major hunter and we do eat chicken.. i am afraid to watch the video. but knowing me i probably will. that's how i roll! I pray that jonut continues to sleep all night and that he stops gushing up his milk. have you tried almond milk? it is totally yummy and it is milk and whey free. i just thought of that..they have it at wal~mart, publix, kroger, and ofcourse whole foods. keep up the good work Girl~
much love and blessings~erin
Try joining a CSA for good, local, in season organic produce. Many farmer's markets are folks who buy produce at a distributor and then just resell it (not necessarily home grown, organic, or any better than the grocery store).
Here is 2009 information for Sanders Ridge: http://www.sandersridge.com/farm/foodguild_2009.htm
And you don't have to battle the crowds at Whole Foods (and organic at any store, could have traveled thousands of miles to get to you, which doesn't make it a whole lot better than anything else). Many local farms also sell meat. Try the farmer's market at Krankies in Winston to purchase real meat that is treated well when alive.
I only have a second...but don't get discouraged with his feedings!! Turns out chocolate is one of the worst things for reflux...it just converts to 100% acid in the stomach. I found out the same way you did yesterday. I got Katie banana cream pudding cups (they're not healthy) when I was desperate for her to gain weight. It worked, she loved them. They are also one of the only things that hides the taste of Duocal!
Oh, the challenge of maintaining a healthy and conscionable diet... And so important for Jonah! He is a real full-time job. And then some! Here's hoping for a great day today!
WendyBee
Yay for organics! I did a little looking and found a food co-op that's less than 30 min. from you in Greensboro: Deep Roots Market. A food co-op (when you're a member) is SUCH a better deal than Whole Foods.
Glad you're getting the results from the testing back. I'm anxious to see the full results. When are they expected back? Call me!
By the way...did I tell you that your brother and me have gone vegetarian for the month of January? It's going great so far!
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