tag:blogger.com,1999:blog-103316002024-03-07T15:47:01.622-08:00The OC MamaStephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.comBlogger1027125tag:blogger.com,1999:blog-10331600.post-21292409542457940222020-08-23T22:33:00.004-07:002020-08-23T22:34:50.043-07:00Finish the kitchen <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLxhdIni4zuBUono9PZ54i3Y80Mieirzf8cKpdXQrvSwo_A37L5OkF7Sboo-B2n-axKPs0VyC0Iayh4aETbABhBDEGMx-YyK36twBlCtQ_vZbIVLRO2pm8qKfpNSvcmdi2LXSV5g/s900/39AE742F-A82F-45FD-BE19-16B4A395AB29.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLxhdIni4zuBUono9PZ54i3Y80Mieirzf8cKpdXQrvSwo_A37L5OkF7Sboo-B2n-axKPs0VyC0Iayh4aETbABhBDEGMx-YyK36twBlCtQ_vZbIVLRO2pm8qKfpNSvcmdi2LXSV5g/s640/39AE742F-A82F-45FD-BE19-16B4A395AB29.jpeg" /></a></div> Getting ready for some household repair projects. Saving ideas for later. <p></p><p><br /></p><p> <a href="https://www.practicalwhimsydesigns.com/kitchen-island-back-panel/">https://www.practicalwhimsydesigns.com/kitchen-island-back-panel/</a></p>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-40341575900559557372019-10-03T02:29:00.001-07:002019-10-03T02:29:51.653-07:00Well we’re all zebras. Now what?So while all of this Ehlers Danlos talk is going on, the older kiddo is having a huge amount of medical issues. She’s got allergists in 2 counties. We’re at the emergency department so much that the doctors and nurses remember us. You do not want to be the parent that walks into the ED and the nurse running triage says to your kid “I remember you. Did you have to epi again?” You don’t want to be the parent who is terrified every time you see the school on the caller ID because there’s a good chance they called 911 again for your kiddo. So that’s going poorly. We just can’t figure it out. Allergic reactions. Low BP. Fainting. That leads to steroids. Epipens. Meds and more meds. Elimination diets. Allergy testing. (It was all positive. ) What is going on? Someone mentioned the trifecta. EDS, MCAS and POTS. I googled. Some of it fit. Some of it didn’t. We saw a cardiologist. He said POTS wasn’t a real thing. She was fine. Allergist suspected MCAS (weird condition where you have allergic reactions to things you’re not allergic to) plus new food allergies and oral allergy syndrome. Mcas is hard to test for. So that was a maybe.<br />
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Anyway this was all going on when the younger one saw genetics. It was a long appointment. We met with a genetic counselor. We saw a geneticist. Family history. Diagnostic criteria. He was diagnosed with EDS. Off the record i was told i have it as well. The doctor looked at this huge bruise i had across my whole forearm. “What happened?” “Oh. I got an IV.” “Uh huh. We know where he gets it from. “ (Bruising and poor sound healing are also part of this condition. )They wanted me to come back for my own appointment and bring back any other children I have. Within a month we were all diagnosed. Older one was the least bendy. But they talked about comorbidities. Like POTS. And how she seemed to have all the comorbidities.Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-36661724214548043362018-11-07T23:38:00.000-08:002018-11-07T23:38:24.911-08:00When you hear hoof beats...So. I mentioned it to my doctor. She didn’t even know what it was. She didn’t think it was a possibility. Around this time the little kiddo dislocated his shoulder. He was goofing off and rolled off the couch. He stood up and his shoulder was pointing the wrong way. I expected him to start screaming. Instead he just braced and kind of pushed it back in. I wasn’t sure what to do. Dislocations hurt. And people don’t generally just put them back and it’s not big deal. He did complain a little of pain and he was a little swollen but he was moving and not complaining much and pain went away with Ibuprophen so we didn’t do much.<br />
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At this point I’m reading more about EDS and joint hyper mobility and learning that you can damage your joints doing this stuff. So i made an appointment with Little kiddos doctor. I thought she’d tell him to stop bending everything. Instead she said. Oh. Ehlers Danlos. We’ll send you to genetics.<br />
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<br />Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-66086180351943628092018-10-24T00:19:00.000-07:002018-10-24T00:19:09.737-07:00ZebrasEver since I was a little kid I’ve been clumsy. I tripped on thin air. I fell. A lot. I rarely broke things but I sprained everything. I was always covered in bruises. In all honesty I’m surprised no one ever called the cops on my mom thinking she’s abused us. I was always bendy, double jointed. I remember my friend making me take off my shoe to show other kids the weird tricks I could do with my toes. Apparently I’ve since learned I was dislocating and subluxing joints. Oops. <div>
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Now in my late 30’s I’m in pain. Like a lot of pain. I’m tired. Everything hurts. So my doctor ordered a bunch of tests. I had heightened levels of inflammation but not lupus or rheumatoid arthritis. No celiacs disease. My doc was kind of stumped. She said I could have something else or one of the rarer things that didn’t show up in tests. </div>
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Then A broke her leg. Walking on a flat surface. She didn’t fall it just popped. The doc at urgent care who diagnosed her was kind of freaking out that she just broke. She mentioned all sorts of random things. Osteo imperfecta. Ehlers danlos syndrome etc. she made me promise to follow up with the ped or ortho or whoever and find out why. The ortho wasn’t concerned. He mentioned that he sees random stuff like this after a growth spurt sometimes. The end of the bone is brittle and pops. But then I was talking to one of her doctors about something allergy related and Ehlers Danlos came up again. </div>
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So I consulted DR Google. (Hey. Kiddos doc has approved my dr googling. He said there are great resources just be careful and don’t make huge changes based on dr google without consulting first. Ha. ) anyway as I was reading about EDS a lightbulb went off in my head. Besides two different doctors mentioning it, it fit me (and half my family) to a tee. Like a lot. </div>
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TBC </div>
Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-19216247614831160232018-10-22T00:16:00.000-07:002018-10-22T00:16:17.847-07:00We’ve come so far...We’ve come so far and learned so much. And seen so many medical professionals.<br />
We’re still not sure what’s going on with Kiddo. She’s been diagnosed with orthostatic hypotension. (Low BP. )And it’s worse when she stands. Her pulse shoots up. She may have something called POTs. Positional orthostatic tachycardia syndrome. When she stands up her pulse goes super high. Little kiddo and i were both diagnosed with a rare genetic condition. It explains so much. Big A sees the geneticist tomorrow. We’ll find out if she has it too. I expect she does. Sorry kids. Apparently my genes suck.Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-26761478699963208162018-03-30T00:14:00.003-07:002018-03-30T00:14:54.779-07:00I don’t feel strong. Someone posted this video on Facebook and it made me cry. I don’t want to be in this<br />
club. No mom wants to be in the “sick kids” club.<br />
<br />
As of today.<br />
<br />
16- the number of foods she tested positive for on allergy tests.<br />
7- the amount of times she’s injected herself with an epipen. (It hurts. Her thigh is covered in bruises. )<br />
6- the number of daily prescription medications she’s currently taking.<br />
3- the number of times her school has called 911 for her.<br />
2-3 the amount of times I generally speak to her doctor each week.<br />
1 the number of times she was given epinephrine in the allergy department.<br />
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I hold it together and stay strong when she’s with me. But when I’m at home. And I see the school on my caller ID and they say she just took her epipen. Someone is on the phone with 911 right now, I lose it. I cry all the way to school.<br />
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The first time the paramedics came she was doing great when I got there. (Thanks to the epipens and paramedics.) I thought I had it together. and then I saw the fire truck. The ambulance. The principal outside waiting for me. The firemen and paramedics surrounding her and I wasn’t as calm. <i>She</i> hugged <i>me</i>. <i>She</i> comforted <i>me</i>. Every other time I’ve got it together before I get out of the car. She’s stressed enough. She doesn’t need to worry about me too.<br />
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IStephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-76779284220605159902018-03-21T21:25:00.003-07:002018-03-21T21:25:47.540-07:00Illness sucks. <div style="font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
<span style="font-size: 12pt;">Dear universe. I do not want to go to Kaiser tomorrow. Like. At all. I went twice tonight. And had a phone appointment. I think I’ve been there at least once or twice every day this week. The pharmacy and lab people as well as ER nurses are starting to remember us. I know the doctors schedule and which office she’s calling from by the caller ID. She doesn’t even announce herself when she calls. I know her voice. I’d just like one day off please. And no phone calls that the school called 911 again either. KThanksBye. #IshouldHaveMyOwnParkingSpot or they should have a frequent visitor program with the valet? Maybe a punch card? #SoNotFunnyThatItsFunny</span></div>
Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-32954801058576614102017-11-12T23:07:00.001-08:002018-03-30T00:17:31.777-07:00I’m not ready I think you should be in prison. You gave your baby meth. And heroin. And nicotine. by choosing to use while you were pregnant she was born addicted. I know you saw her a bit when she was first born. ( you know. When you u were fighting with your baby daddy in the hospital and you were being nasty to the nurses because they wouldnt let you breastfeed. Because, ya know, you had just had a positive pee test for meth. That Means you used within a few days of giving birth. And your breast milk wasn’t safe. ) so by the time she was two days old you’d already taken off from the hospital. Remember? After the nurses reported it was a domestic violence situation. They were concerned that she was starting to withdraw and needed to go on methadone. Because ya know heroin is a bitch to withdraw from. Especially when you’re a newborn. But you and baby daddy said no to methadone. Because the hospital was just screwing with you. There was nothing wrong with her. You also said no vaccines. Because. Chemicals. (Drugs don’t) count I guess.<br />
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tbc...<br />
<br />Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-87471592026038858072015-06-12T20:48:00.004-07:002015-06-12T20:48:33.165-07:00Smores cupcakes. <div style="color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 16px; line-height: 20px;">
<span style="font-size: 13px;"><span style="font-style: italic;">Every so often someone at My house wants smores cupcakes. And every time I spend an hour tracking down the recipe. So today I'm copying and pasting directions from another blog. The original blog with the recipe is no longer up. </span></span><br />
<span style="font-size: 13px;"><span style="font-style: italic;"><br /></span></span>
<span style="font-size: 13px;"><span style="font-style: italic;">marshmallow frosting</span> (sew darn cute)</span><br />
<span style="font-size: 13px;">1/2-3/4 lb. (2 or 3 sticks) butter, room temperature<br />1 lb. (2 cups) confectioner's sugar<br />1/2 tsp. vanilla<br />16 oz. tub of marshmallow cream</span><br />
<span style="font-size: 13px;">1. cream the butter on high until light and fluffy<br />2. add the confectioner's sugar, 1/4 cup at a time, and beat until fluffy each time<br />3. beat in the vanilla until incorporated<br />4. add the marshmallow fluff and mix until creamy<br /><br />this came together easily. sadly, husband could only find 14 oz tubs at the store so it was not quite as marshmallow-y as it could have been. but there's no way i need 12 oz of leftover fluff in my house, as good as fluffer-nutters are...no way.<br /><br />top the piped frosting with crushed grahams (i put them in the food processor until they were fine crumbs) and an individual piece of hershey's chocolate.</span></div>
<br style="color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 16px; line-height: 20px; text-align: center;" />Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-1014957670834408022015-03-08T07:04:00.000-07:002015-03-08T07:04:06.465-07:00You make me laugh..A: did you have a good nap?<br />
B: no I couldn't fall asleep.<br />
A: you were snoring. A lot.<br />
B: no. I was just breathing.<br />
A: you were snoring so loud that I couldn't sleep. For at least an hour.<br />
B: huh. Yeah I need a other nap. Since I didn't get any sleep.<br />
<br />Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com5tag:blogger.com,1999:blog-10331600.post-3215474383435661732014-12-21T21:40:00.000-08:002014-12-21T21:40:23.544-08:00Just another day...Little A: Mom. Mom. Mom. I have an injury. A bad one. It's really bad. Look. My nose really hurts. Right here. <div>
Me: it's dry. Go have dad give you your medicine. </div>
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Little A: that stuff tastes terrible. You'll never take me alive! (He runs away screaming.)<br /><br /></div>
Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com7tag:blogger.com,1999:blog-10331600.post-5589621166932218912014-05-10T16:03:00.001-07:002014-05-10T16:03:02.427-07:00Conversations where I beat my head against a wall.J where do you want us to take you to eat on Mother's Day?<div>Me: I'd really like Sushi. </div><div>J: ...</div><div><br></div><div>The day before Mother's Day, while we're sitting at J's favorite diner</div><div><br></div><div>J: did you decide where you want to go for Mother's Day? </div><div>Me: somewhere that has sushi. </div><div>J: but I don't like sushi. </div><div>Me: I don't like diner food. </div><div>J: ?</div><div><br></div><div>Theyll probably take me to eat at the diner for Mother's Day. Know what I really want? For someone else to do the dishes that are currently piled in the sink. And I want to sleep in tomorrow. The kids asked what I want for Mother's Day and I was very specific. I even had them repeat it back to me. :-) I told then I wanted to go to the natural history museum, or go drive up the mountain or go for a hike. We'll probably watch tv. And I'll probably still get diner food. Or pizza. My babies love pizza. But they'll hug me and snuggle me and that will be the best present of all...</div><div><br></div><div><br></div><div><br></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com6tag:blogger.com,1999:blog-10331600.post-88085797590070714692014-03-14T13:10:00.001-07:002014-03-14T13:10:00.620-07:00Words of wisdom from little A.Ok. If two people get too close to each other and they're dreaming or both having nightmares (it has to be the same) then they could become one. Like one dream. Or one nightmare. To stop it, they have to get further away. Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com5tag:blogger.com,1999:blog-10331600.post-35657536658745014222014-02-27T21:52:00.001-08:002014-02-27T21:52:30.931-08:00On the road again...You know it's a really special day when you've been to kaiser three times and the kids' school four times and it's only noon. <div><br></div><div>I don't have time to have a real job. </div><div><br></div><div>On the third visit to kaiser this morning I lost my car. I couldn't remember which spot I'd parked in this time, I went to the lot I parked in for the first and second visit. Is it time for summer break yet?</div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com2tag:blogger.com,1999:blog-10331600.post-81697928827535009152014-02-11T18:58:00.001-08:002014-02-27T21:53:46.602-08:00Boys.Little A just started taking baths again after a year or more of mostly taking showers. He named himself Captain naked the pirate. Then he made music by tooting in the tub and then laughing hysterically afterwards. Silly boy. Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com3tag:blogger.com,1999:blog-10331600.post-82153343246080886302014-02-07T19:55:00.001-08:002014-02-07T19:55:37.044-08:00I want to meet the president...Big A: oooh look it's president Obama<div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Little A: I thought we were watching gymnastics. </span></div><div>Big A: it's the Olympics. The gymnastics is later. I want to meet president Obama. </div><div>Little A: You have to bow to him. </div><div>Me: No you don't have to bow to the president. You just have to be polite. </div><div>Little A: Soooo we can't be mean to him? Or hit him right? That would be bad. Big A, when you meet president Bama don't be rude k?</div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-89769640767277467302014-01-21T22:02:00.001-08:002014-01-21T22:02:15.368-08:00Ramblings<div><br></div>It sucks when you realize someone that you thought cared, really doesn't give a shit. It sucks even more to realize that you can't change that person or your relationship with them. You're just stu<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">ck in a messed up situation. I feel bad for people. </span><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Unrelated, but it also sucks when kids will not go to sleep. J is asleep. Little A has finally been quiet for a few minutes, but I can still hear big A in her room... I just want to finish the dishes, read a chapter in my book, and go to bed. </font></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com1tag:blogger.com,1999:blog-10331600.post-72707588265684405962014-01-16T10:55:00.001-08:002014-01-16T10:55:02.627-08:00Read this blog post this morning and it made me tear up a little. Some days I don't feel like I'm doing enough. But maybe tomorrow I will get there. <div><br></div><div>If you're a mama, you should go read this. <br><div><br></div><div>http://lisajobaker.com/2014/01/a-love-letter-to-all-the-tired-mamas-everywhere/</div></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com1tag:blogger.com,1999:blog-10331600.post-5980653020715512162014-01-01T15:49:00.001-08:002014-01-01T15:49:49.865-08:00Little A saysMama. Maybe my life is just a dream. (Pause) and when I die I'll wake up. Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-48848514120033776362013-12-22T08:19:00.001-08:002013-12-22T08:19:02.284-08:00Big A: it would be horrible if I got sick right before Christmas. <div>Little A. It would be horrible if I broke my leg right before Christmas. Then I couldn't get to my presents. You'd have to get them for me. That would be a bad bad BAD Christmas. </div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-89939940358289030542013-12-14T08:38:00.001-08:002013-12-14T08:38:14.664-08:00Little A.Little A: It's hard for a queen to get boys. <div><br></div><div>Me: huh?</div><div><br></div><div>Little A: it's hard to have princes. You know the babies? They usually have princesses. Have you seen on Disney? It's lots of princesses. </div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-497780505003390112013-12-14T07:35:00.001-08:002013-12-14T07:35:09.261-08:00Big A saysIf I stop throwing up, we can still go to the snow today right? <div><br></div><div>Um. P<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">robably not kid. </span></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-70121586757784942672013-12-07T07:39:00.001-08:002013-12-07T07:39:26.525-08:00Little A says:"Hey mom. If every pork chop was perfect, we wouldn't have hot dogs. I learned that on a show." <div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Love that kid. </span></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-13962597737986975432013-11-03T21:49:00.001-08:002013-11-03T21:49:48.526-08:00Little A says...Mom it's like I can hear everything. I can hear everything in the world and it's all too loud. Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0tag:blogger.com,1999:blog-10331600.post-49765221586235678122013-11-01T11:17:00.001-07:002013-11-01T11:17:46.701-07:00It's nablopomo againWill I blog every day? Doubtful. Will I try? Sure why not. I'll start with being thankful. Maybe I can post one every day. It's day 1 and I'm thankful for my family. :-)<div><br></div>Stephaniehttp://www.blogger.com/profile/07383050080146929555noreply@blogger.com0