tag:blogger.com,1999:blog-9058895534003999812024-03-12T21:12:34.054-07:00Marchese FamilyLiving Life One Heartbeat & Swallow at a Time....Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-905889553400399981.post-76862489827296256492014-05-05T17:46:00.001-07:002014-05-05T17:46:08.341-07:00Adoption day!Today I toast Cinco de Mayo with a Mexican beer (ole!) and a huge piece of love for what this day means for us. Four years ago today, the state of Arizona declared the boy who I had held since birth, that I would be, the first person to ever feed him, his forever mother. Vincenzo Carmelo became Gavin Wyatt. Before everyone goes up in arms about the name change... We named Grace Loren. Both her first and middle names- we chose. Her mother allowed and trusted us enough to raise her daughter and give her daughter a name. With Gavin we had a similar opportunity, but I felt so drawn in and connected to his birth parents story, that I asked them to please give him a name. We all knew that name would change to Gavin, we asked their permission for the name before we decided (Grant, Griffen, and others were in the running...) Gavin's birthfather's name is Vince, and Felix's father's middle name is Vincent- Gavin felt like a perfect for to honor the "Vin". Wyatt is Classic American. I like to think we chose a play on my maiden name, Waite, since I was the last of the Waite clan. Wyatt also resembled phonetically my maternal grandfather's first name, Wijbrand (or why-brand). Gavin Wyatt- we loved you before we knew you. You gave us a run in the beginning- but man am I ever thankful for you. Today, the day we became a forever family- know you are so loved. Love you forever, baby-cat. (I'm scratching your hand). Someday you'll read this and only you will understand what that means. You are forever my special boy. <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtoMCXo4eUUltjaRwoOH2fi-fo_cebI58QRYNw3ioc7eAZXtleMEHWKuB7XaKm3oy4cpt6Yy9YXNf6pLaqtIei37mfPzltg35R4adNMRe2ofu2YHMf27nEyMDLPk7-27Qn0jZbkSoc290/s640/blogger-image--969629485.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtoMCXo4eUUltjaRwoOH2fi-fo_cebI58QRYNw3ioc7eAZXtleMEHWKuB7XaKm3oy4cpt6Yy9YXNf6pLaqtIei37mfPzltg35R4adNMRe2ofu2YHMf27nEyMDLPk7-27Qn0jZbkSoc290/s640/blogger-image--969629485.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtoMCXo4eUUltjaRwoOH2fi-fo_cebI58QRYNw3ioc7eAZXtleMEHWKuB7XaKm3oy4cpt6Yy9YXNf6pLaqtIei37mfPzltg35R4adNMRe2ofu2YHMf27nEyMDLPk7-27Qn0jZbkSoc290/s640/blogger-image--969629485.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH2fdQFO8hZT3t8SmHkNEOUmKo5RKBOXH-BkSbwwn_5NHvSQ6UrzPIcHvYnEe5kMQEpVRDM4t0-6OuRloinDeRLRWQ5x3y2MEce5Nr_p3ikxpUAXVqIoPIMvh5yQRELm6rhY7zJvbJuk4/s640/blogger-image-1204065190.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH2fdQFO8hZT3t8SmHkNEOUmKo5RKBOXH-BkSbwwn_5NHvSQ6UrzPIcHvYnEe5kMQEpVRDM4t0-6OuRloinDeRLRWQ5x3y2MEce5Nr_p3ikxpUAXVqIoPIMvh5yQRELm6rhY7zJvbJuk4/s640/blogger-image-1204065190.jpg"></a></div></div><br></div>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-87827029722195019812014-05-05T13:07:00.001-07:002014-05-05T13:07:54.827-07:00Cardiology UpdateHad our checkup with Dr.. Shah today. Cardiology went reasonably well. A few more worries ahead, but we'll tackle them as they come up. Next big surgery could be as soon as a couple years to five years, ten if we are pushing our luck. Right side of the heart is growing thicker, this is to be expected as her heart continues to work harder. This is the same side that was shaved down at Stanford during the last surgery. The next procedure that they will have to do is to place pressure inside of her pulmonary artery conduit to be sure that her coronary arteries aren't affected. If her coronary arteries are affected she will always need open-heart surgery to replace the valve. If her coronary arteries are not affected during this test then she should be a candidate for the melody valve which is something that will be done through her femoral artery. She also has a right bundle branch block that were monitoring it is about the 120s now and they will get worried when it approaches 180s. Her valve leak is mild to moderate, and so her murmur is back again. We'll check back in 6 months. If she faints at any point, based on her anatomy, we need to get to hospital and notify cardiology ASAP. <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghwionDdPuquCZzA9U_jup-Xe-UPW_nvsJfgtx9qn4NroKViQqAAYtl5jJYi2gfX9VKgHh33eGoyjWnPiryfjYRh4QhR-X6Y98FdoIS2pUUvfJiTQG9Oi5HLdy7AlQsqf2SVhaE_KFRJg/s640/blogger-image--1829995553.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghwionDdPuquCZzA9U_jup-Xe-UPW_nvsJfgtx9qn4NroKViQqAAYtl5jJYi2gfX9VKgHh33eGoyjWnPiryfjYRh4QhR-X6Y98FdoIS2pUUvfJiTQG9Oi5HLdy7AlQsqf2SVhaE_KFRJg/s640/blogger-image--1829995553.jpg"></a></div><br><div><br></div><div>This isn't bad news. It's kinda great. But it doesn't feel that way. With cardiac kids, I feel like there is never a clear answer. When is surgery? Ask one time, it will be 10 years, the 2nd answer five years and maybe a third try, and you'll get 3 years. I know it's not a precise guess and that only Gracie's body decides when it's time to misbehave, but I feel like I'm always waiting for the shoe to drop. Even though there is absolutely nothing for me to stress about at this exact moment in time, I can't help but worry about what if and the next open heart surgery. She's beginning to ask questions, and say that she has what the doc is calling "phan chest pains". Anytime we go anywhere just grace and I, she assumes we're off to some cardiology needle-filled procedure. I have totally broken this little girls trust. If she asks me if she has to have surgery again, I hate that I don't have the answer for her, and I won't. Some things are just frustrating. Can I ever heal her fears and anxiety? Can anyone? I'm struggling, lately. It's as if now that the dust has settled physically for a bit, my emotions have finally become unraveled. I'm finally angry, and sad, and scared and hurt. And angry. And I don't want to be anymore. Made an appointment to talk with someone this month. She's also an adoptive special needs mom- hoping for some insight. For now, God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">to know the difference. Amen. </span></div></div>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-31849970364980221372013-07-09T21:39:00.001-07:002013-07-09T21:39:52.601-07:00A Stitch in TimeMy itty bitty boy has shifted into a large, bruise-seeking boy! He is so stinking clumsy! Today at a friend's home (another Anneke....seriously. What are the chances?!?) we spent the hot muggy day swimming. Gavin, ever the curious boy, had his sights set on the other side of the backyard- the sandbox side. I wrapped him in a towel- tight- he insisted, and he walked off to play, explore and discover. A few steps forward, and BOOM! Face, meet pavement. Could my graceful son fall on a flat surface? Of course not! He caught the corner of the curb along with some bonus gravel and sand right above his left eyebrow. Also bit a hole right through the inside of his lip. Poor little man- he was so brave, but he really didn't want to go to the doctor. Unfortunately, although small, the puncture was deep enough to warrant a physician's eye. <div><br></div><div>He sat in the waiting room at urgent care, unfazed as blood streamed down his face. He was distracted by the aquarium and eventually settled into a nap while we waited a good 30 minutes to be seen. I was in a swimsuit, a cover up, soaking wet, and now was streaked with old blood. Good times! Finally called back, he handled the shot like a pro. Not even a whimper until the very end, "No More Pinching Me!" We waited for it to numb and then he took his stitch in time. Thankfully only the eye- doc figured he'd just chew out a mouth stitch. </div><div><br></div><div>While getting the debris rinsed out, he broke into a fit of giggles- I heart my silly boy! Hopefully no scar.... Stitch comes out on Saturday. Stay tuned! <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9L9JUmHv2z5de8ofD4BBtUeq9Gp5xvMw3hQrjrWFTEPncMSKNVi6go1YEadhj0g6VFpd1wAxlLQC2Sd5nDj5jwpp2MzGGE0PFg4DPTqgqLmcqo9xH1D2kUuMX9yAmiTKroZ-8fXjmL74/s640/blogger-image--134663940.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9L9JUmHv2z5de8ofD4BBtUeq9Gp5xvMw3hQrjrWFTEPncMSKNVi6go1YEadhj0g6VFpd1wAxlLQC2Sd5nDj5jwpp2MzGGE0PFg4DPTqgqLmcqo9xH1D2kUuMX9yAmiTKroZ-8fXjmL74/s640/blogger-image--134663940.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9L9JUmHv2z5de8ofD4BBtUeq9Gp5xvMw3hQrjrWFTEPncMSKNVi6go1YEadhj0g6VFpd1wAxlLQC2Sd5nDj5jwpp2MzGGE0PFg4DPTqgqLmcqo9xH1D2kUuMX9yAmiTKroZ-8fXjmL74/s640/blogger-image--134663940.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6XwP0X0jROcisNT88kfqIAm69J34P-vi4tjm8P-m8jPXlld7_YEzaUZCkURacYdKedeo0-qFRfYvOufhD7jEHd3eFd6iEyQ2X9bdQZCalWjsF9Z85Gydt6-Nw8HrOpTxBDLBjJVbFJUc/s640/blogger-image--808320225.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6XwP0X0jROcisNT88kfqIAm69J34P-vi4tjm8P-m8jPXlld7_YEzaUZCkURacYdKedeo0-qFRfYvOufhD7jEHd3eFd6iEyQ2X9bdQZCalWjsF9Z85Gydt6-Nw8HrOpTxBDLBjJVbFJUc/s640/blogger-image--808320225.jpg"></a></div></div></div>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-4876333480409856372013-07-09T11:34:00.001-07:002013-07-09T11:34:26.746-07:00Better late than never...<div class="separator" style="clear: both;"><div class="separator" style="clear: both;">Better late than never, right? </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This past spring we headed back to LPCH (Stanford) to check post-op status and intervene if necessary (balloon or stent). Despite crazy insurance drama, we finally got approval, only after coming home, but again- better late than never. ;) Gracie's heart looked phenom! In fact, she didn't even have to stay overnight! What a rock star! Gavin was really content to be along this time- so much easier for all of us to stay together, makes it a tad bit more normal in extremely abnormal circumstances. We were able to have some fun on our trip- sightseeing, Golden Gate park's concrete slides, lunches and bfasts out, even seeing the California Academy of Sciences. We visited with family and came home thrilled to have a year or more before we have to be back at the hospital. More updates to follow! Better late than never, like I always say ;)</div></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1bjPL0EDUWl0ClCkjpZH46Om4YPHufwHaG1jtuKRKshq12683oUsi2usoYySwbIFNRWrM52rjoRWIYtselCq3juAe9_dtEuL6u9SZszlCYnptDpKfX0s1gMvzZAUPqOLzYfCLI8FTKl8/s640/blogger-image--679174417.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1bjPL0EDUWl0ClCkjpZH46Om4YPHufwHaG1jtuKRKshq12683oUsi2usoYySwbIFNRWrM52rjoRWIYtselCq3juAe9_dtEuL6u9SZszlCYnptDpKfX0s1gMvzZAUPqOLzYfCLI8FTKl8/s640/blogger-image--679174417.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1bjPL0EDUWl0ClCkjpZH46Om4YPHufwHaG1jtuKRKshq12683oUsi2usoYySwbIFNRWrM52rjoRWIYtselCq3juAe9_dtEuL6u9SZszlCYnptDpKfX0s1gMvzZAUPqOLzYfCLI8FTKl8/s640/blogger-image--679174417.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsBVRRrze7yNwhdelxC09DYgFrVoeYTliHHm2cGLEvQbOKDSqgBJn4H3S76gs-PidK1Q8V7Fp36FkpxTdVbz08zAIw7mti5IGY2Yoljs57-3VcFdl_2bL8QuCB1QXzFMIAqXuv04kJSCE/s640/blogger-image-386134212.jpg" imageanchor="1" style="margin-left: 1em; 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Insurance Drama<p>First and foremost, Grace is doing well- not really any changes, but doing well. We're doing our best to stay quiet and keep her still, rested, and sleeping. Sleeping=healing. When Grace does stir (wake-up really isn't the proper term), she's pretty pissed about it and goes straight to pulling at her vent, her art lines, her IV, or whatever mischief she can get into while amped up on drugs. During rounds this morning, docs think her agitation is due to being vented, and having chest tubes, not pain, so we're weaning her meds. Dopamine is gone, Milrinone is weaning. TPN still running, but also getting a slow trickle of Elecare to keep her gut active. Still no signs of Chylo, but since she's literally being fed at a rate of 2 oz per DAY (yes, you read that right), it will take FOREVER to see chylo... Or, maybe another day or two. :) If you're a G Tube Heart mommy, you'll get my humor. </p><p>Vent settings are sticking with the APRV bizarre breath pattern- she's at a PHigh of 18, and to wean to traditional vent settings, PHigh ideally will be at 15 or 16. We'll get there. Slow and steady wins the race. As long as Ms. Sassy is vented, the sedation must continue. </p><p>We've officially been in California for 11 days now. We've seen the gamut of weather- sunny, windy, rainy, cold. I feel like I can drive the distance between Milbrae and Palo Alto in my sleep. I officially know my way around Millbrae, almost as well as I do around Surprise. We finally got a room at the Ronald McDonald House on this past Friday, but the bed is HORRIBLE. Literally, if one person rolls over, the other person flies off the bed (think camping air mattress), so we've been sleeping in a sleep room (twin bed) at the hospital, or going back to Millbrae. All of our food expenses and rental car expenses have been coming out of pocket and it's adding up FAST. With no return home in sight, I'm getting a bit weary. Not to mention that I miss my son like crazy! Gavin apparently cries out for us in the middle of the night, and is now at the point where he won't look at our picture. :( My heart aches for him- I know he has NO CLUE what is happening, and I wish I could make it better. Being a mom, my role is really up in the air right now. I'm feeling more out of sorts than ever before. Instead of being in charge of my daughter and son, right now I'm in charge of nobody, and have no control over either kid's environment. Talk about feeling helpless...</p><p>Insurance drama today doesn't help with things. 2 months ago I began calling both insurance companies (our private, and state MedicAid) to give them a heads-up of what was coming and to iron out any issues before our trip. Both stated that we were green-lighted, and nothing to worry about. NOT TRUE.... I received a call today from the MedicAid benefits coordinator. Nobody advised them from either Dr.'s clinic (Phoenix or Stanford) of the surgery. Since nobody there was notified, they didn't offer assistance. Apparently, in a perfect world, we would have had our airfare and lodging covered, and possibly food assistance. REALLY?!? I've been here 11 days and I'm just hearing about this now?!?! The lady was super nice and apologetic. Since there was no notification, payments weren't pre-authorized, but she told me not to worry about it, it'll be handled behind the scenes. I can't even imagine the bills we would have received.... OUCH! She's working her hardest to get us moved to the Stanford Guest House (on their tab) for the remainder of our stay. If we can move there, we can hand in our rental car (more savings!), and take the shuttle provided. She'll call me in a few hours with news, but I'm pretty hopeful for now. It would be AMAZING to be in a comfy environment 2 miles away from Grace. I'm not used to being away, considering in Phoenix we stay physically in the ICU. Here, we're lucky to have a seat! It's very different... but different, not bad. </p><p>Hopefully we'll get some help for meals- it's stupid expensive to eat here. $14 for lunch today! That's a chicken sandwich and 2 chicken enchiladas... I'd much rather do Chipotle for less! </p><p>Alright, I'm done venting. Off to hold Gracie's hand... Thanks for prayers, all!</p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-72418310995503678612012-02-12T16:15:00.003-07:002012-02-12T17:04:57.045-07:00The Long & Winding Road... to Recovery<p>I sit writing this by Grace's bedside, listening to the continual rhythmic beeping of her monitors. For the first time, post-operatively, I'm filled with peace. </p><p>Grace's surgery was a success! Dr. Hanley is truly an AMAZING man- he is humble, humorous, honest and just amazing. Grace's surgery started at about 7:30am Thursday morning, with her first dose of Versed. She left our sight laughing, smiling, and sticking her tongue out- that is the BEST way to say a goodbye to a kiddo going off to the surgical unit. I actually laughed, not cried! Well, okay... I cried when she left my sight, but I was super strong mama kissing her farewell. ;)</p><p>Dissection lasted a LONG time. Dr. Hanley met with us around 10 am, and he hadn't even headed into the OR suite at that point, letting the anesthesia team do their thing, and the fellows do the dissecting. Dr. Hanley estimated at that point, before going in, that he wouldn't be able to restore flow to the upper left lobe, but would reconstruct the upper right PA's leading to the upper right lobe, he'd attempt a 20mm conduit, and that the whole surgical portion would last until about 2 pm. </p><p>Being antsy, my hubby suggested we take a walk in the fresh air and sunshine- I was hesitant, but I'm super glad I listened and went along. Stanford University is BEAUTIFUL! We went to the Hoover Tower and took in the beauty and silence- amazing! After, we walked to the Memorial Church. We were lucky enough to hear the organ play (I hear this is a VERY unusual occurence, and only happens during church services). The organ boomed out a jubiliant tune, and literally seconds later, we got a call that she was doing amazing, and things were going better than expected. I truly felt peace- what a spiritual moment! </p><p>Dr. Hanley met with us around 4pm- he was able to get a 22mm conduit in place, and restore flow to BOTH sides (remarkable!!). Dr. Hanley sees no reason why this size conduit shouldn't last a good 10 years, and now she'd be a candidate for the Melody Valve procedure if/when the valve becomes faulty. The right side of her heart will slowly reduce in size, now that the pressures are down. There was a fair bit more work on her lungs than expected, so she's been recovering from a re-perfusion injury. </p><p>Originally we were told that we'd be out of ICU in about 24-48 hours post-op. Unfortunately, due to Grace's history of sick lungs, added to the complexity of the surgery repair to her PA's, we're far OFF that estimate. Grace will likely be intubated (sedated) throughout this week, then hopefully to a high flow nasal canula. The floor won't take her unless she is on 3 liters of O2 or less- so that could potentially be a few weeks off. It's easy to become overwhelmed under these circumstances- Grace is completely nonresponsive, and we literally are just sitting, watching her breathe for 12 hours/day, only to go to bed, exhausted, at night. </p><p>I'm coming to terms with the longer hospital stay, but I'm human, and had my breakdown. Today, I'm filled with more peace- I can see small changes, they're giving me hope and I'm seeing the light at the end of the tunnel, granted a LONG tunnel, but we'll get there. Thankful for the prayers, the blessing of friends, and the gift of family! </p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com3tag:blogger.com,1999:blog-905889553400399981.post-76628417760185069702012-02-07T11:38:00.005-07:002012-02-07T11:49:15.786-07:00<p>We made it to Stanford!! We also went a on Grace's wish trip, but since I'm typing this from out of state, I'll post wish trip details when we get home. </p><p><br /></p><p>Yesterday Grace had a heart cath with Dr. Perry. The cath lasted about 3 hours. Here's the info for surgery that will take place Thursday with Dr. Frank Hanley. </p><p><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">Dissection is planned to take 2-4 hours. They'll dissect a bit more than originally planned to be able to get to her upper lobe and outlying PA's. Conduit change as planned, hopefully 15mm or bigger. She has a 12mm now. 14 or bigger makes her qualify for the melody valve in the future if her valve fails but conduit still open. </span></p><p>Cath showed that her upper left lung lobe has no blood low. Lung perfusion test completed to see more in depth. Still no results. Unsure if upper lobe of left lung hasn't had flow long-term, or if this is a recent issue. The degree to which the lobe and arteries are damaged will give them an idea of timeline.. If Dr. Hanley is able to find a viable artery it's possible he can rehab and restore. Unfortunately, upper lobe on right has severe stenosis and is headed to the same plight. Thankfully, Hanley can rehab and fix, and also ensure no future lobe flow loss since he is somewhat of a pioneer in this situation.<br /><br />The PA's are quite close to the Frenetic nerve. If the frenetic nerve is messed with, it causes a diaphragm issue. We won't know if there is an issue until extubation, and will be apparent if she struggles with breathing. Apparently, the frenetic nerve controls the up and down mechanism of the diaphragm, so the issue <span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">is that the diaphragm could be "stuck" in the up position, requiring another small surgery to stitch the diaphragm down.</span></p><p><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">Each PA repair takes about an hour and the conduit change also takes about an hour. Actual operation time will be 6-8 hours, but we won't see her for probably 10ish. Bypass time is expected to last 3 hours, and goal is to keep heart beating, since the VSD fenestration healed itself.</span></p><p><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);">There is a concern about chylothorax since she's had it twice before. If it happens, well wait until she dries up. I asked about the JP drain that PCH sent us home with in the past only to receive stares. Their response? It's not in our medical practice safety guidelines to do that.<br /><br />Also asked why we didn't know about the lobe flow issue before. Their politically correct reply? PCH probably only sees surgeries with her complexities maybe a few times a year, Hanley sees this several times a week. Its his life's specialty- he knows EXACTLY what to look for. I feel so comfortable with my decision to come here. Only upset I didn't know before birth so we could have avoided some of the complications that we've seen since operating at Phoenix Children's. </span></p><p><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);">Grace is now running a low grade temp, I'm assuming because of anesthesia? Also now super junkie because of being intubated. Worried that surgery could be affected... Pray for health. </span></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-7019356134604464542011-11-22T21:06:00.006-07:002011-11-22T22:00:11.780-07:00It's Off to Stanford We Go!<p>I've been having funny feelings about Grace lately- call me crazy, but we've gone too long without major cardiac concern. I've spoken about these concerns with family, friends, other heart parents, our cardiologist, cardiac nursing friends, etc. I was starting to feel less concerned, but there was something that just didn't sit right.<br /></p><p>I'm glad I followed my gut. I decided to seek a 2nd cardiology appointment with another practice. I adore our current cardiologist- he's youthful, optimistic, upbeat, kind, great with words... this was not personal in any way. When it comes to my kids, I just want to be sure I'm doing my best to get them what they need, so off I went.</p><p>Grace's most recent ECHO showed that the right side of her heart continued to be enlarged- working harder to compensate for issues. On a scale, she was a 120, with 150 beginning the point of no return (CT surgery imminent). This number doesn't typically change quickly, but it shows that her heart function isn't perfect, and will require intervention in the near future (1-2 years). We knew this, we are okay with this. Grace also has a 12mm conduit (homograft)- this is one of the SMALLEST conduits made. She's had this in place since July 2009.... there are kids that are smaller than her with larger conduits, and they're looking at replacement in the next 2 years. Again, we knew this, we're okay with this, but we don't want to wait until "too late".<br /></p><p>We decided months ago that we would be going out of state for Grace's next heart surgery- and Stanford seemed like the best fit. I had been in contact with their surgeon, and we were waiting until Grace was deemed "ready" to be presented (post-cath or MRI here in Phoenix).</p><p>Today was our 2nd opinion- a 4 hour appointment! Grace was a champ. We left with MUCH information... where to begin?!</p><p>Apparently, we are all born with outlying pulmonary arteries that continue to grow for the first 6 years of our lives. If we reach the 6th year point, essentially we deal with what we have. We can balloon or stent, but no more true "growth". In Grace's case, she has SUPER tiny outlying PA's. September of 2010, Grace had her right side ballooned, and left side stented, because her heart pressures were approaching a bad range- as her heart was pumping against a "traffic jam", per se. The procedure helped. Today, we were told we need to be pro-active and take advantage of the next 3 years in growing larger and more PA's, to continue reducing the overworking of the heart, keeping us in a safer zone, and giving her a better long-term prognosis. Makes sense, right? A cath procedure- minimally invasive with potential long-term benefits? Yes, please.</p><p>In Grace's last OHS, the surgeon discovered multiple collateral arteries, or MAPCAS. Because none of them were of substantial size, they were coiled and killed off, instead of harnessing them for greater good in a unifocalization procedure. I was concerned that Grace's body was generating more collateral arteries, and that if we didn't see someone (surgeon) with MAPCAS experience, we were doing a disservice. Fortunately, (GOOD NEWS!) MAPCAS are not a concern at this time-there are no notable collateral arteries. Yippee!</p><p>Lastly, and here is where it get's confusing.... we have and have had, a valve issue. Grace's homograft (the 12mm one) is essentially a synthetic pulmonary artery, as she was born without one. The conduit looks decent- minimal narrowing. It could probably go another year or two. Unfortunately, the valve within the PA (typical of TOF kiddos) will begin to leak, wear out and need to be replaced. When TOF kids are born with their PA intact, this can potentially be replaced (after the 1st initial placement done OH) in a cath procedure, using a melody valve. </p><p>What does this all mean? Essentially a cath in the next 90 days @ Stanford. The cath will determine what outlying PA's can be ballooned, stented, grown, etc.; and if her conduit is big enough to accept a melody valve. Stanford needs to decide whether they'll: 1. do nothing; 2. stent/balloon/grow; 3. place a melody valve & determine replacement date of conduit; 4. do replacement of valve & conduit, or set a later date to do so.</p><p>Basically, we're going to Stanford blind. We could end up being there for a minor cath, or her complete repair (2nd). In a way, this is good for me. I don't have the time to panic about the what-if's.<br /></p><p>Faxes have been sent. 16 DVD's are being fed-exed. Stay tuned....</p><p>PS- Grace's 1st Make-a-Wish visit is coming! Day after her 3rd birthday!!!</p><p>Oh yes, and to cap my great day off? My hubby ran a red light tonight and T-boned someone, totaling his company car. Awesome...<br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-45817034581419646962011-06-08T21:37:00.002-07:002011-06-08T22:12:20.203-07:00Changes Ahead....<p>Grace has been looking duskier and duskier as of late. I've tried to chalk it up to mommy worry, but now friends and family have been commenting on it. It was time to make the dreaded call to cardiology. Grace was seen last week by Dr. Shah. He agreed her color was a bit off, but he was most concerned about her behavior. Grace has always been a calm kiddo- but at 2 1/2 years old, she should be FAR more active and energetic than she is. Grace is the type of kiddo that's content to watch Dora (I don't think she can ever get enough of Dora!!), color, lay in bed with mama, or cuddle on the couch. Don't get me wrong, there are times where she's running with her brother- strangling him, hitting him, hugging him, chasing him; the calm times are greater than her energy spurts. Most recently, Dr. Shah thought we'd be able to get to age 5 without surgery, but my gut has been telling me differently- and I think my gut is right, sadly. Mark my words, people-it's the one time in life I would love NOT to be right! :)<br /></p><p>Grace's O2 sats hovered around 94 (her norm is 99), and while crying dropped down to the low 80's. Not a HUGE concern, but with the other issues, it's enough of a concern. Her EKHO looked decent. There is definitely regurgitation- but without an MRI or more invasive procedure, it's impossible to know what percentage of regurgitation there is. The thought is, she's not as active or as pink as usual because the regurgitation may be at a more severe range than expected. I'm not sure that her pressures have stayed down either, but time will tell. Dr. Shah ordered an MRI with anesthesia. He had hoped to get it done within the month, but with the merger of the two hospitals, scheduling may not have been ideal.<br /></p><p>Thankfully, we were able to get in pretty quickly. Grace will have her MRI on June 22nd at 10:30 am. We'll check in at 9, with nothing to eat or drink beyond 4 am. If there is something that can be potentially fixed in the Cath lab, they'll potentially take her there. Unfortunately, it doesn't appear to be a Cath fix.<br /></p><p>The day of cardiology, we started talking surgery. I wasn't ready for it, but knowing my gut, I've kind of known all along- my gut tells me we'll be doing CT surgery within the next 6 months. After talking with the cardiac team, my family, and my God, we've decided to have surgery out of state. Dr. Shah supported our decision, and recommended that we make our hospital decision now- versus waiting until an emergent situation. He suggested Baylor, Stanford, Boston and CHOP as options, among others. Financially and emotionally, Stanford makes the most sense. We are originally from the Bay Area, and still have many friends and family that reside in that general outlying area. I'll be scared to be away from home- but comforted by the familiarity during the uncertain time.<br /></p><p>To complicate my worries, we saw GI yesterday with mixed results. The GI asked if we had seen cardiology, as they're noticing a change in her color. UGH! Seriously?!? I explained that yes, we had, and gave them cardiology's plan. GI is a bit concerned that it may be time for cardiac surgery as well, as for the first time in over a year, Grace lost weight, despite the extra feeding therapy sessions. The thought is, if there is less positive blood flow (regurgitation), her gut would be the last organ to receive blood support- thus making it difficult for her. She hasn't been vomiting much, but it's increased above her normal range. Maybe it's because of this? Maybe not... Either way, we're bumping up her caloric intake primarily through tube feedings to give her a better buffer for weight loss due to either CT surgery, or admission to an inpatient feeding program (more to follow on that). Also, because of her daily aspirin dosage, the concern is that there is damage being done to her gut, that would only get worse during CT surgery. Grace will now be taking Omeperazole to soothe her gut lining. Not sure we'll see the outward benefits of this, but hopefully we'll avoid any internal gut bleeds post-op.<br /></p><p>Prior to all this cardiac craziness, we had been admitted into Phoenix Children's outpatient intensive feeding program (we had been on a waitlist since she was 3 months!!). We were super hopeful about this being the answer to Grace's behavioral issues when eating. It was helpful, but not nearly enough. GI recommended looking into a behavioral inpatient program. Unfortunately, there is no such program in the state of Arizona. We discussed both Milwaukee Children's and John Hopkins (Kennedy Krieger). The cost of airfare is bound to kill us, but we'll make it work, even if I have to max-out credit cards. After communication with both programs, Kennedy Krieger seems to be the better option. Prior to the cardiac appointment, we scheduled an eval appointment for July 14th.<br /></p><p>Fast-forward to now- WOW! So, there are a few ways this can go... 1. Grace will have her MRI and need surgery right away & we'll be sent to Stanford. 2. Grace will have her MRI and need surgery, but may be able to wait a few months. 3. Grace will have her MRI and not need surgery for a year. The big question for our family is- do we risk paying tons of money in airfare to get the eval @ Baltimore, only to have to postpone treatment for surgery, or worse, she succeeds treatment, then has surgery, and loses her skill. UGH! What to do, what to do?!? At this point we've decided to wait it out. We should have some cardiac answers at the end of this month, and we'll make the rest of the tough decisions at that point.<br /></p><p>Gavin is doing AMAZING!!! He's been taking his budesonide slurry (mixed with 4 splendas)- he drinks 1/2 in the morning, and 1/2 in the evening- and it's been working!! His latest biopsy shows partial remission. He is clear in his upper esophagus and middle esophagus, but his lower esophagus still has numbers in the 60's. Our GI thinks that by adding Omeperazole we'll be able to combat any reflux that's occuring, and achieve full remission. He'll have another biopsy in 2-3 months, and we're hoping it will be our last for some time. Praying for remission!!<br /></p><p>On a brighter note, he's eating EVERYTHING! Falafel, Pad-Thai, milk, applesauce, etc. You name it, he eats it. He gained an average of 12 grams a day- we were shooting for a goal of 8! That's my little overachieving man! He's still having his sensory melt-downs, but we're coming up with creative methods to combat the screamies. Our swim lessons with him are GOLD- he's a true fish! He's already swimming underwater and able to grab the wall, and climb out- all by himself!!<br /></p><p>I feel bad for Gav during this time of chaos with his sister- I don't want him to feel my stress and tension, nor do I want him to feel less important. It's a trying time- and I'm finding myself unable to sleep at night, but needing a nap by 10am. I'm hopeful that I'm just in a funk and that I'll work my way through it. </p><p>We'll soon have TONS of family around- Felix's parents are moving here this week, and his sister her husband and daughter will be here next month. His brother and wife will be here this winter. I'm stoked to have the kid's relatives around and to have more family time! My mom has lived here for a while now, also Mimi (my other mother). My dad and family live in Wisconsin, but we'll be able to visit more often now that we have less places across the US to vacation.<br /></p><p>I think that's it for now. I'm long winded... and tired, but grateful for my babies and content to start over again tomorrow.<br /></p><p>As Grace now says, "I You Mama" for I love you- that is ALL I need to get by! XOXO</p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-23674813607891653842011-05-24T19:44:00.002-07:002011-05-24T19:59:53.998-07:00Tired of Playing Catch-Up... the Title of My New Book: Procrastination<p>I am really bad at this. No really, I mean it. I'm REALLY bad at updating this. So many nights I spend thinking about what I could be updating and making sure I remember, or thinking about how I really should be posting about where we're at medically, but time manages to escape me. It's official- I am a procrastinator.<br /></p><p>The kids are well- healthy and continuing therapies as normal. I get scared during these "coasting" times- I'm always anxious about when it will be "time" again for Grace's next OHS. Every day I scrutinize her lip color, nail color, etc. I hate to say it, but going to cardiology once every 6 months is far more anxiety inducing than every other month. Sad, but true.<br /></p><p>Both kids are walking and running EVERYWHERE! They're literally into everything. Grace is talking up a storm, Gavin's speaking in spurts- it's going WAY too fast!</p><p>If nothing else, this post can be a journal entry for me to remember their "language".<br /></p><p>We say: Grace says:</p><p>YESSSSS! Ssssaaawwwhhhh!</p><p>I'm ready I'm wettty</p><p>I'm hungry I num-num (while touching her nose) or I knee<br /></p><p>Brother Boo-Boo</p><p>I love you TU-TU</p><p>I love you too TU</p><p>Bubbles Pop-Pop</p><p>I'm two I Two!</p><p>Private Parts Butt</p><p>Ketchup/Ranch I want Dip-Dip</p><p><br /></p><p>She's adorable! I love her mmmmm's the most after she eats something really yummy. I also really like her aaaaah! after she drinks something refreshing.<br /></p><p>I recently taught her the Gaga paw... Bad Romance came on in the car, and I thought it only appropriate to teach her how to "put her paws up" for Lady Gaga. She's really got it down!<br /></p><p>Gavin is saying Bottle (BaBa), Water (WaWa), and Mama and Dada. </p><p>More updates to follow.... sometime this year (maybe).<br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-56551131434801883892011-02-07T16:55:00.001-07:002011-02-07T16:57:35.932-07:00My Life with Gavin....<div style="text-align: center;">I want to explain to you why my child is<br />having such a rough time today…<br />What you are seeing when you look at my<br />child is not a child who is "out of control" but<br />rather a child who is "out of sync." My child<br />has Sensory Processing Disorder (SPD),<br />which is the inability of the brain to properly<br />and/or efficiently process and organize<br />sensory information. When my child's brain<br />receives information through any of his<br />senses - sight, smell, hearing, taste, touch,<br />vestibular or proprioception -- he doesn't<br />always know what to do with that information<br />and can become very disorganized,<br />overwhelmed, frightened and confused. You<br />can read more about SPD at<br />www.spdnetwork.org.<br />My child has good days and bad days. You<br />must have run into us on a bad day. I<br />apologize if we have made you uncomfortable<br />or if we have been disruptive. My child is<br />currently involved in many types of<br />interventions, working on these sensory<br />issues, so that he can feel normal like you<br />and so that when we go places, he feels safe<br />and comfortable in his own body. It is going<br />to be a long and difficult journey, but in the<br />meantime, please know that inside him is a<br />beautiful and magnificent little person<br />waiting, hoping and trying to emerge!<br />Think about how difficult my child's SPD was<br />for you today, then try to imagine how hard it is for him.<br /> The next time you see us<br />out somewhere, please understand...</div><p><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-3151417276658792002011-01-27T21:35:00.016-07:002011-01-27T22:34:29.698-07:00Inspired!Such a great evening tonight! After much debate, I managed to get out of the house and attend the Eller Family Heart Council meeting. What a group!! The families were all so friendly, so supportive, and so energized by one another. I left feeling part of a group, finally! Super excited to get more involved.<br /><p>Today started with Gav's biopsy. Good news, so far. His furrowing (imagine tunnels running down his esophagus) has decreased, but the biopsy will tell us the real results. In a week or so, we'll know if he's in full "remission". If he's in remission, we can safely<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAXUIac655RGJfPJ_2FCAVFVPQdioB8dshGdaADFE3KB_1MAJsX4MaTSxY0hJQ8rTYKZRcWMG2nWCPeldTt_oAFQMda5gMw046pSn5vPrf6BNu_NH3uPLbaN-_o1RpBAgmjhsq8DOIbl8/s1600/179642_500760997169_766357169_6104580_7108146_n.jpg"><br /></a> assume his allergies are all food-triggered, and we can start introducing 1 new food at a time, with a biopsy between each addition. Sounds long and painful, and it will be, but at least our little big man can start eating something other than Elecare (*hopefully*)! Speaking of my little big man, he cracked me up yesterday trying on mommy's glasses! Check out these silly pictures!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAXUIac655RGJfPJ_2FCAVFVPQdioB8dshGdaADFE3KB_1MAJsX4MaTSxY0hJQ8rTYKZRcWMG2nWCPeldTt_oAFQMda5gMw046pSn5vPrf6BNu_NH3uPLbaN-_o1RpBAgmjhsq8DOIbl8/s1600/179642_500760997169_766357169_6104580_7108146_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAXUIac655RGJfPJ_2FCAVFVPQdioB8dshGdaADFE3KB_1MAJsX4MaTSxY0hJQ8rTYKZRcWMG2nWCPeldTt_oAFQMda5gMw046pSn5vPrf6BNu_NH3uPLbaN-_o1RpBAgmjhsq8DOIbl8/s320/179642_500760997169_766357169_6104580_7108146_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5567092315697267026" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiH731Znb-u6eel27LCmEu-AB_1UjK4hTaSYTnQKscl7mMF7w0qAnwepGLfHvgfJr47_ET3mDdbC_9iRIby83XEwoZlMkcDFoXTrHryJ1odENxBpap0xzzGpFuanKpQ0eQyT8ArdXA1ns/s1600/179642_500760987169_766357169_6104578_5127099_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiH731Znb-u6eel27LCmEu-AB_1UjK4hTaSYTnQKscl7mMF7w0qAnwepGLfHvgfJr47_ET3mDdbC_9iRIby83XEwoZlMkcDFoXTrHryJ1odENxBpap0xzzGpFuanKpQ0eQyT8ArdXA1ns/s320/179642_500760987169_766357169_6104578_5127099_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5567092309731826770" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnKSCklqfMuiTxA73zKdi1hJvr-pW35E5CYFZn5tUkCF-YbncQwX6XNvfVfMyAvMA207k1_8PmPHM6ar0MUGQ9ua2f4yH8hMIXIHjTTZIw1b9zhuH8ZU-wKFCaFZGq6GQ4jr_Ijm-lQxI/s1600/179642_500760992169_766357169_6104579_2399725_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnKSCklqfMuiTxA73zKdi1hJvr-pW35E5CYFZn5tUkCF-YbncQwX6XNvfVfMyAvMA207k1_8PmPHM6ar0MUGQ9ua2f4yH8hMIXIHjTTZIw1b9zhuH8ZU-wKFCaFZGq6GQ4jr_Ijm-lQxI/s320/179642_500760992169_766357169_6104579_2399725_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5567092305439360610" border="0" /></a></p><p>Grace is doing well, she's a full-fledged toddler FOR SURE! We have days where she loves on her brother, giving him continual hugs and grabbing his bottle when he's upset, to days where she's running him over with her Little Tikes buggy, his motorized quad, or hitting him and pushing him away from their toys. She often throws food, but this week we've managed to get more into her belly than on the floor. We're hoping for a BIG growth spurt by the next GI appointment. She's still hovering around the 21 pound mark. We're slowly introducing the potty, although we've yet to have success. Grace likes to sit on her potty, pants around her ankles. Then she stands, wipes, throws toilet paper in the bowl, and waves goodbye to it. CRACKS me up! Hopefully someday soon, we'll have some actual results- no rush, though. I'm on the fence on transitioning her out of her crib. She seems okay with it, still, but she likes to sleep in our bed for naps, or even for fun. She's started jumping up and down in her crib, and I'm starting to worry about injuries. We'll see... anyone out there have any reccomendations?<br /></p><p>We got GREAT news at our last cardiac clinic visit. Grace's pressures have improved so significantly they are not even viewable on the ECHO any longer! Woo hoo!! Dr. Shah estimates them to be in the teens/twenties. Considering we were in the 50's/60's pre-cath, I'm stoked! No more viagra for my girl! If we continue on the path we've been going, Grace may be able to hold off on her next surgery until closer to age 5. Let me say that again, because I'm still in shock over it, age 5!!! AGE 5!!! That is AMAZING! I won't be shocked if we don't get there, but at least we've made it a year and a half with no major "zipper" surgeries. ;)<br /></p><p>Grace and Gavin's birthday party was a success. Since Grace was sick during her "scheduled party" we decided to do a combo party. Such a fun day! Here's the pics!</p><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgxnrQHWuqmGGvU0Vj-dFfFy6qTbkCzU1LpXDExdouy14k0C5w67fweICHwIqDVatuTLaV5_1fr4Ix-_ecCAZF3Tx_2utLEepBCk_BDd3mQnTZ5JL6Mxl-q54ScA1nqUsvCdygwxvKdjM/s1600/January+2011+040.JPG"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgxnrQHWuqmGGvU0Vj-dFfFy6qTbkCzU1LpXDExdouy14k0C5w67fweICHwIqDVatuTLaV5_1fr4Ix-_ecCAZF3Tx_2utLEepBCk_BDd3mQnTZ5JL6Mxl-q54ScA1nqUsvCdygwxvKdjM/s320/January+2011+040.JPG" alt="" id="BLOGGER_PHOTO_ID_5567098631625505970" border="0" /></a><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEzw6lCCRTW4HoUtyAlXb3y-gFVzaGAYI_WUljC-PD0hR5lhVlpkEhZTEBQgNhR5tlW1626XFc9vWrh9vgwlidWo3EkMjwHAdJTpr6eLx5yMNd90mdUpocCG5aCmJ0FboJJzZGZ0n2NvQ/s1600/January+2011+070.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEzw6lCCRTW4HoUtyAlXb3y-gFVzaGAYI_WUljC-PD0hR5lhVlpkEhZTEBQgNhR5tlW1626XFc9vWrh9vgwlidWo3EkMjwHAdJTpr6eLx5yMNd90mdUpocCG5aCmJ0FboJJzZGZ0n2NvQ/s320/January+2011+070.JPG" alt="" id="BLOGGER_PHOTO_ID_5567098639936272866" border="0" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkH_0jfb8iQYjdpoL4gH-ulQ-14Yyq53eCULFAYD8zhC-aBjjrC38NISiccPzLQbv5thGy3tYFk6aetRuP8cydKeIoVZs_ZIYF57VTGuK4HJb3G7B6qHMq77vN34-uVxkvd5ohbqAUZGs/s1600/January+2011+086.JPG"><img style="cursor: pointer; 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width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzzSF5Ydj9LQ20hAgCrOr3oHVQn_5L_H0B8K27309Lof6_FjGgVeNZO9OpV5HkHLj2q8RUAZJg7Nv_BpYKBeZHK8PB4K351G1pL8wF9uth-T4TTTU-JiWXG04rZHrjtzJ8J7mvD4JP9z0/s320/166134_1791424473474_1475500622_1999385_7571445_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5567102529450383810" border="0" /></a></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghXex7S2D15hN65jy5qgSiAjmCinas3LaFFnqNDe5IGzDxyJGvt3QcJIRnH3EuLfyHU2gPHb3a6hgbuuOTEErhc2_tjnUwiVaaUqggn8fS8CEDJpMyqe4kI0fXXWJmPevymShvXIKCMrM/s1600/164496_1791425873509_1475500622_1999392_2871760_n.jpg"><img style="cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghXex7S2D15hN65jy5qgSiAjmCinas3LaFFnqNDe5IGzDxyJGvt3QcJIRnH3EuLfyHU2gPHb3a6hgbuuOTEErhc2_tjnUwiVaaUqggn8fS8CEDJpMyqe4kI0fXXWJmPevymShvXIKCMrM/s320/164496_1791425873509_1475500622_1999392_2871760_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5567102534720533970" border="0" /></a></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA4Yy-AOPn841t5zXUE5GqMRWphLK4j8fPVfdf5xza0oBJFFWDVzeW7qA9iLB244Q7p5prvPWycEV68fgBnt7F4aKTr2ylZZXUVjdQlpcJI0-7SowQ8tnagzXUsFQ6lx49kmLdP1FeMtM/s1600/January+2011+145.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA4Yy-AOPn841t5zXUE5GqMRWphLK4j8fPVfdf5xza0oBJFFWDVzeW7qA9iLB244Q7p5prvPWycEV68fgBnt7F4aKTr2ylZZXUVjdQlpcJI0-7SowQ8tnagzXUsFQ6lx49kmLdP1FeMtM/s320/January+2011+145.JPG" alt="" id="BLOGGER_PHOTO_ID_5567100841704148978" border="0" /></a></p><p>We also fed the ducks this past week- Grace said "duck" for the 1st time. Such an experience!! Too bad her favorite word this week is "butt".... :( Oh well, we can't pick our battles. LOL!</p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUf-rOl2_VAwOBeSAphYKNapR_nvy2d07D_4G28OF41-TitzYUmbUtE7_sYiuQUFG3tyrj8oQ3BadYSD8iX_GfxBxxIcIi6G0s_3lReJdrhE2neIKUwEpzw8Zfn10FODzZncfLj5U9xe8/s1600/January+2011+152.JPG"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUf-rOl2_VAwOBeSAphYKNapR_nvy2d07D_4G28OF41-TitzYUmbUtE7_sYiuQUFG3tyrj8oQ3BadYSD8iX_GfxBxxIcIi6G0s_3lReJdrhE2neIKUwEpzw8Zfn10FODzZncfLj5U9xe8/s320/January+2011+152.JPG" alt="" id="BLOGGER_PHOTO_ID_5567105659207613026" border="0" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqPbwX_nsMtZa7UWF-H4HQ0SOBmQwHVafxfAPLIzbyDdPVQJA4G3YMgz0DhLr4TuBf37yXnSdbwI2BBoluYfBe4ECinTR7Ki2XH_nUw6OqmCnti1p2v1XJNME5z5rJcgRTPNVaxdE9Mro/s1600/January+2011+160.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqPbwX_nsMtZa7UWF-H4HQ0SOBmQwHVafxfAPLIzbyDdPVQJA4G3YMgz0DhLr4TuBf37yXnSdbwI2BBoluYfBe4ECinTR7Ki2XH_nUw6OqmCnti1p2v1XJNME5z5rJcgRTPNVaxdE9Mro/s320/January+2011+160.JPG" alt="" id="BLOGGER_PHOTO_ID_5567105645058879010" border="0" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjL962yo7rOzxv3kJkKZkGFcm4Dlvs8LNQXBDqn_dqhX6_YntUmxYV_bYm9G22ESUAsuG8Bx4yP4a0GD9APdRrfndFWL8YkDbiC2lYNAFhUbt87dNzVfv5Z5mtCqhx7v-IvLLIR3odGQ/s1600/January+2011+168.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjL962yo7rOzxv3kJkKZkGFcm4Dlvs8LNQXBDqn_dqhX6_YntUmxYV_bYm9G22ESUAsuG8Bx4yP4a0GD9APdRrfndFWL8YkDbiC2lYNAFhUbt87dNzVfv5Z5mtCqhx7v-IvLLIR3odGQ/s320/January+2011+168.JPG" alt="" id="BLOGGER_PHOTO_ID_5567105634698771218" border="0" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRo1ZkGXryuTrsllPlvrNcF_BeM-c_6jj-4XpQoNdpaZMc-VpN3R8ixgRmaVeu46TASQyDjbHyxmntSRtKW0C5XLv8LLU1cenmcM53Y5JkH9s2GI8D3yb4D-fkn7kcNOrCP3a1tSpBblk/s1600/January+2011+171.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRo1ZkGXryuTrsllPlvrNcF_BeM-c_6jj-4XpQoNdpaZMc-VpN3R8ixgRmaVeu46TASQyDjbHyxmntSRtKW0C5XLv8LLU1cenmcM53Y5JkH9s2GI8D3yb4D-fkn7kcNOrCP3a1tSpBblk/s320/January+2011+171.JPG" alt="" id="BLOGGER_PHOTO_ID_5567105227934108146" border="0" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjofihmefDtAyP6ttdquAjaNXutZO7QOwRi4Kq8XG0g9UdT-oGdwEkQbDOMt28Ge0RGwMCZ5w5FwnGKCNSMbQva0wZTIPZ3aPF6mLqeyoIn9OnjaeBb_2AWa48bssWGhSJ5KuCLT8HlxUc/s1600/January+2011+189.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjofihmefDtAyP6ttdquAjaNXutZO7QOwRi4Kq8XG0g9UdT-oGdwEkQbDOMt28Ge0RGwMCZ5w5FwnGKCNSMbQva0wZTIPZ3aPF6mLqeyoIn9OnjaeBb_2AWa48bssWGhSJ5KuCLT8HlxUc/s320/January+2011+189.JPG" alt="" id="BLOGGER_PHOTO_ID_5567105223561917266" border="0" /></a></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-46233713891473251202010-12-31T22:57:00.008-07:002010-12-31T23:22:46.468-07:00Wrapping up 2010...I can hardly believe the year is over- didn't we just begin? Gavin's first year of life has gone by entirely too quickly... I'm losing my baby years. Starting to get baby fever, a bit, but then I come to my senses again. :) Thankfully!<p>Updates: Gav's biopsy was rescheduled due to the awful, nasty, icky cold that charged into our home and refuses to leave... he'll have it done on the 13th of January. I'm hoping for good results, either the same or less eosinophils. Grace's ultrasound came back normal (Thank God!) and she's adjusting well to her SMO (foot brace). She's walking everywhere now, it's her only mode of transportation now- so exciting!! <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiLdznsD7Vdyn0yRIPHcHbUJY8U44vWPubQds6u86V9WPBCSNYrU4ECr8iVwSZl2PtSUhgun7ZtIrjt10qA078npRNpQ4ybVzZUEDsPP-GziO5fxsjAaO6U1ej-p-qkoNUdhNM8XsdFss/s1600/166677_1750390567652_1475500622_1914576_2028846_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiLdznsD7Vdyn0yRIPHcHbUJY8U44vWPubQds6u86V9WPBCSNYrU4ECr8iVwSZl2PtSUhgun7ZtIrjt10qA078npRNpQ4ybVzZUEDsPP-GziO5fxsjAaO6U1ej-p-qkoNUdhNM8XsdFss/s320/166677_1750390567652_1475500622_1914576_2028846_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5557096390787470402" border="0" /></a>Gavin is starting to cruise- I'm sure walking won't be far behind.<br /></p><p>Christmas was far too good to our family, we really are quite spoiled. The kids got a water play table, a pirate ship, Papa and Grandma and they are in LOVE! <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYTwWfqGgf8b5C3i85rTbsGkSgIfmMmJLOdlg5kVSG-EGurj_8f_oA-eVbf_Ic8o6IyFI7MgSH1R42PPCaNmeskL2risxvR_NZLOkEdYjxmJE5Tl9CWWRtbHdpsvpGz6IShLPOvmjvOds/s1600/December+2010+040.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYTwWfqGgf8b5C3i85rTbsGkSgIfmMmJLOdlg5kVSG-EGurj_8f_oA-eVbf_Ic8o6IyFI7MgSH1R42PPCaNmeskL2risxvR_NZLOkEdYjxmJE5Tl9CWWRtbHdpsvpGz6IShLPOvmjvOds/s320/December+2010+040.JPG" alt="" id="BLOGGER_PHOTO_ID_5557096040996109762" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVXQkPZB82a25TWorSU0WlNaoCn3Egrb8D-jc1aCXxOTONR2vOi2ZnYwsTDfqJDO2wwCIF3etC-YlhXGl20HnlGIFuNZtrFTHSPXB39qkQdbtKo0FO9Ice3Qe3xqO8FKZIuC9pBYXNSrs/s1600/164126_1750405448024_1475500622_1914662_3067055_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVXQkPZB82a25TWorSU0WlNaoCn3Egrb8D-jc1aCXxOTONR2vOi2ZnYwsTDfqJDO2wwCIF3etC-YlhXGl20HnlGIFuNZtrFTHSPXB39qkQdbtKo0FO9Ice3Qe3xqO8FKZIuC9pBYXNSrs/s320/164126_1750405448024_1475500622_1914662_3067055_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5557096051206927058" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM20zA6NfVy_GRazMle5xks7o9jQ1SWFDI5Moiprs6HCPQ0KF0NjvqT6zpIcPXCJLBL6jiL6Z_mIeUrKhaD1UFzb2218MOjFV-De59nP5lvs4WHk4Y1S3ifXuh5EQIWBFuoF6-AqVFtmU/s1600/63595_1750405528026_1475500622_1914663_4835632_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM20zA6NfVy_GRazMle5xks7o9jQ1SWFDI5Moiprs6HCPQ0KF0NjvqT6zpIcPXCJLBL6jiL6Z_mIeUrKhaD1UFzb2218MOjFV-De59nP5lvs4WHk4Y1S3ifXuh5EQIWBFuoF6-AqVFtmU/s320/63595_1750405528026_1475500622_1914663_4835632_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5557096052159899602" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUCe5jJe6MtLyfKQ0zYYR7S_ALfPEIGJZecpRxf9NgLd5Uhzs4b0X7wCNqqjp8eM7U0rMl7xeX7Qe4_rNcxpHFQie2mVKmGM6WKr_3CoJo7dwlJ56UueCqUT4SrTW9Ng0cwuFxDjfKJs/s1600/166629_1750403727981_1475500622_1914649_7460121_n.jpg"><span style="color: rgb(0, 0, 0);font-size:100%;" ><span style="font-family: georgia;"></span></span><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 297px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUCe5jJe6MtLyfKQ0zYYR7S_ALfPEIGJZecpRxf9NgLd5Uhzs4b0X7wCNqqjp8eM7U0rMl7xeX7Qe4_rNcxpHFQie2mVKmGM6WKr_3CoJo7dwlJ56UueCqUT4SrTW9Ng0cwuFxDjfKJs/s320/166629_1750403727981_1475500622_1914649_7460121_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5557096053618445218" border="0" /></a>The Gonce family spent Christmas dinner with us, and it was awesome to watch the 4 kids play together- a beautiful day to spend outside, filled with giggles and splashing!<br /></p><p>Grace checks the backdoor every day to make sure her boat remains in the backyard. She begs to play in it daily, irregardless of the weather. Poor girl got terrible goosebumps trying to play the other day- then bundled in a nice warm towel and got comfy and cuddly- mommy's favorite time!<br /></p><p>We've survived a mini heart procedure (stent and 2 balloonings) and approach 2011 with hope for a quiet heart year. We've survived Gavin's crazy allergies, and also approach 2011 with hope for a diet that fits our growing boy. We continue to have all of life's blessings and love- our family being the greatest gifts.<br /></p><p>With love to all, cheers to another year!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyl1638Y8yLeZy2MhC-E29C3yzwcb9y19MkuUHr7cJblaBeOh9AP5g-Ijh8167bmRpR9GUZViijnaJ7dF1ERMLAXkPIS2XfHa-WzrEqX2Vfwf67a_-xZIbCvj7A8GcVYg87cgKrY7SRGA/s1600/Marchese+Christmas+003.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyl1638Y8yLeZy2MhC-E29C3yzwcb9y19MkuUHr7cJblaBeOh9AP5g-Ijh8167bmRpR9GUZViijnaJ7dF1ERMLAXkPIS2XfHa-WzrEqX2Vfwf67a_-xZIbCvj7A8GcVYg87cgKrY7SRGA/s320/Marchese+Christmas+003.JPG" alt="" id="BLOGGER_PHOTO_ID_5557096048569537170" border="0" /></a></p><br />Our family letter for 2010:<br /><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> 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<w:lsdexception locked="false" priority="33" semihidden="false" unhidewhenused="false" qformat="true" name="Book Title"> <w:lsdexception locked="false" priority="37" name="Bibliography"> <w:lsdexception locked="false" priority="39" qformat="true" name="TOC Heading"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Times New Roman","serif"; mso-ascii-font-family:"Times New Roman"; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:"Times New Roman"; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">Season’s Greetings, all! Hopefully this letter finds you in good health, and happy hearts! We’ve had a busy 2010 and 2011 is sure to bring even more excitement and joy. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;"></span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">We kicked off 2010 with a visit to Wisconsin, blessed to spend time with family over the New Year. Grace experienced snow for the first time, and wasn’t quite sure what to make of it. All of us enjoyed spending time with family, especially meeting our 3 nephews: Hunter, Cranden and Spencer. Upon leaving Wisconsin, we received a call from the adoption agency about a prospective placement. Again, blessings shine upon us, and within a week, we welcomed our son, Gavin, to our family. Gavin was born January 17th, weighing 6 pounds, 4 ounces. It was such a change for us to bring our child home from the hospital right away! Grace welcomed her little brother with welcome arms, and I know she’ll never be able to imagine her life without him. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;"></span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">February found us busy at home- nesting, and preparing Gavin’s room. We literally had less than a week to prepare for his arrival, so we spent many weekends at home enjoying our new family. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;"></span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">March was a busy month for our family. Felix visited Connecticut on business for 3 weeks, leaving me alone with 2 children for the first (not last) time. Wow, had I been taking his help for granted!! Thankfully, I had plenty of help from family and friends! My dad and step-mom came for a visit from Wisconsin, along with my aunt and cousins from California. Together, we saw 3 spring training games (Milwaukee Brewers and the Oakland A’s). Pam (Mimi) moved back from Michigan, and has continued to save my sanity as a live-in help, physically and mentally! </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">In April, we decided to sell our small home, as we were officially busting at the seams! Luckily, we have great friends, and we were able to move into a larger home at the end of the month. The month was a blur, with Pam making an emergency flight back to Michigan at the unexpected passing of her father. We’ve spent the past few months reliving his amazing life, and remembering the good times. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">May was a blur, as spring often is. In addition to spring cleaning, we experienced spring moving- a new phenomenon, especially with 2 children! I vowed never to move again, without a moving crew- what a job! Gavin’s adoption day was officially celebrated on Cinco de Mayo. We were surrounded by friends and family at the courthouse, and then after during a celebratory breakfast. It was a wonderful relief! Grace continued to amaze us, as she went from 100% oral aversion, to eating baby food- literally overnight! Worried it was a fluke, we continued to feed her daily, often every hour or so. I’m happy to report that Grace is still eating, making more progress daily.<span style=""> </span>On Mother’s Day, I received the best present EVER- Grace finally learned how to return a kiss! Of course, I’ve been smothering her with them every day since! Felix found himself being sent to Denver on business with a one-day’s notice. Making the best of his business trip, the kids and I traveled with him to Colorado. The kids and I then rented a car and made the 8 hour drive to Felix’s parent’s home in Cody, Wyoming. Mid-way I was blessed to visit family in Casper, Wyoming, enjoying laughter and pizza and a great night’s sleep, before making the rest of the drive. We spent 2 full weeks in Wyoming. The kids enjoyed their grandparents, great grandmother, great uncle, aunt, uncle and cousin as well as Yellowstone National Park. What a great visit!</span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">In June, I became an officially ordained minister and officiated my first wedding ceremony- my mother and step-father’s! It was a beautiful, intimate affair celebrated in our backyard with friends and family. Grace learned to officially crawl in June, as well, but preferred her usual mode of transportation- the “butt-scoot”. Grace would literally sit on her bottom, scooting everywhere she needed to go, often quicker than I could walk! </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">July came and went, with one of the hottest summers I can remember here in Phoenix. To escape the heat, we took a family day-trip to Sedona. The 10 degree difference was AMAZING! We spent all day just enjoying the break. Felix and I celebrated our 9<sup>th</sup> wedding anniversary on July 14<sup>th</sup>- hard to believe it’s been that long! To celebrate, we took the kids on a 3 day staycation at a local resort. We spent all 3 days submerged in the pool- so fun! We learned that Gavin loved to swim and kick, in fact, he loved the water so much he would often fall asleep in his floaty for a mid-swim nap! After that trip, Felix and I decided we needed a vacation from our vacation, so we splurged on 2 nights at another resort for just us. Very, very relaxing!</span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">August and September went by far too quickly- with not much “autumn” here in the valley. Luckily (for the kids and me!), Felix was sent on another 2 week business trip to Denver, so the kids and I visited Wisconsin and enjoyed the fall splendor! Felix was able to join us at the end of his trip, and we all enjoyed the visit with family. Felix and I were able to sneak away for a day, and I enjoyed playing tour guide. We spent the day touring the lakefront of Lake Michigan, even having lunch with a good friend at the American Club in Kohler. When we returned back to the heat of the desert, we played catch-up on our daily lives. The kids both had numerous doctor visits- including Gavin getting ear tubes, and Grace having a stent placed in her left pulmonary artery. Luckily, kids are super resilient, and they recovered quickly and seamlessly! We spent the remainder of the summer mostly indoors, while Pam and I worked on building a miniature kitchen set for the kids. Great idea- they love it!!</span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">October was still warm, but we could see the change in seasons on the horizon. Gavin had some allergy testing done, and we were able to get some answers about his health. We’re still working on figuring out his perfect “food” combination, but I’m confident we’re making the appropriate strides towards our goal. Halloween was an exciting day for our family! We all dressed as a clan of pirates, went to a neighborhood block party, and then trick-or-treated into the night. Gavin was a bit overwhelmed by the whole experience, and fell asleep immediately once we got home. Grace decided she wanted to be a “big kid” and would walk, yes walk, to the houses! This was a first for us- such an exciting time! She proceeded to hoard her candy bars when we got home, eating a full-sized Baby Ruth bar! </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">The holiday months kicked off early with November coming so quickly! Felix and I were gifted tickets to Elton John, and made a great date-night out of the event. We planned a pre-Thanksgiving mini-trip to Disneyland, meeting good friends for 3 fun-filled days! We enjoyed the memories made with my niece and my god-children. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">Everyday finds our family blessed beyond words. Our lives have changed significantly over the past few years, and with the holiday season upon us, we can’t help but be thankful to God for where we are now. Grace continues to grow stronger and stronger, tipping the scales at a whopping 20+ pounds! She’s walking more every day, and growing up way too quickly, having turned 2 on December 1<sup>st</sup>! Gavin is turning into a little man, right before our eyes. He’s crawling EVERYWHERE, babbling up a storm, and trying to outgrow his sister at a whopping 19+ pounds! Their laughter fills our home, and for that, we are eternally blessed. </span></p> <p class="MsoNormal" style=""><span style="font-size: 10.5pt; line-height: 115%;">Happy Holidays to Each and Every One of you!</span></p> <br /><br /><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" />Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-24277882186059946472010-12-16T22:44:00.003-07:002010-12-16T22:48:17.393-07:00Spreading the Word...<span jsid="text"><span class="text_exposed_show">Dear Friends,<br /><br />As many of you know, our son, Gavin (age 11 months), suffers from a rare autoimmune disease called Eosinophilic Esophagitis ("EE"). Kids with EE are quite literally allergic to food. The proteins in food cause a build up in the digestive tract and blood of a white blood cell called an eosinophil.<br /><br />Eosinophils are meant to attack parasites, but the body of a child with EE mistakes food for a parasite. As a result, the build up of eosinophils cause numerous and very serious health problems, including, failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, inability to sleep, joint pain, just to name a few. Many kids with EE can only eat 1 or 2 foods and need a feeding tube to survive.<br /><br />CURED is a charity that I am actively involved with that raises money to find a cure for EE. CURED has donated over $2 million to research over the past 6 years. CURED has begun a $1 challenge. We are looking to find 500,000 people to each donate $1 or more to CURED, since that is something that almost everyone can do in these hard economic times. If you are interested in donating, please write Gavin's name on your donation and mail it to CURED at P.O. Box 32, Lincolnshire, IL 60069. or go to<span style="text-decoration: underline;"> </span><a href="http://www.curedfoundation.org/" rel="nofollow" target="_blank">www.curedfoundation.org</a> and make a donation via pay pal. Furthermore, if you wish to go even a step further, please forward this email to your family and friends. The more we get the word out there, the more likely it will be that we will reach our goal.<br /><br />Thanks for your help!!!<br />Happy Holidays!!</span></span><p><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-15122217767062688922010-12-15T20:32:00.002-07:002010-12-15T20:45:38.195-07:00MRI<p>Gav's MRI results came back today.... 100% normal. I was so relieved at first, but not I'm just confused. If there is nothing wrong with him neurologically, what is causing him to be weaker (stiffer) on one side of his body? Why is he so hypertonic? Why does he have a sensory processing issue? I asked the nurse all of these questions, only to have her tell me that the doctor will be in touch... Fabulous. That will probably only take 500 years. In the meantime, I've made an appointment with a Developmental Pediatrician at the Melmed center. I'm hoping for some answers. I think I get more frustrated with Gavin's issues than Grace's because I have no way of understanding the problems, as they're not defined or explained. With Grace, it's fairly cut and dry. She has TOF, therefore she... etc, etc, etc. With Gav, it's he has nothing, yet these are all the bizarre things he does. No, I don't know why, that's why I'm here... UGH!<br /></p><p>Respite is the BEST invention ever. Seriously. Today, I made 5 batches of cookies, all while Jess, our respite provider, read and played with the kids. Friday, she comes again, and I'll have all afternoon to nap, or clean, or even go out for a massage. I get approximately 72 hours per month, per kiddo, so... I have lots of relaxation coming my way. Woo-hoo! I feel guilty, but I am in such need of this, so I'll accept it and be thankful.<br /></p><p>Tomorrow is another busy day for the kids. Gav is scheduled to have his EE biopsy, but since he's become super congested (and coughing), I think I may reschedule. Grace is scheduled for her bladder/kidney ultrasound. She had a UTI, and apparently it's unusual for kids her age. I'm wondering if other preemies have similar issues? I've noticed that she doesn't have the "inner protection" that other full-term girls have. I'm trying not to get too graphic here.... LOL!</p><p>I'm completely obsessed with the Glee soundtrack. It's somewhat disgusting. All of my ringtones are now songs that have either been on Glee, or are sung by Glee cast members. My favorites? F*&k You by Cee Lo Green; Marry You by Bruno Mars; Valerie by Amy Winehouse... the list goes on and on....</p><p>Random thoughts :)<br /></p><p><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-34444433090910988762010-12-14T21:18:00.003-07:002010-12-14T21:50:38.231-07:00Updates<p>I'm so exhausted this holiday season! I have much to be thankful for, but I can't help but feel like I'm draggin'...<br /></p><p>Today was a busy day, not unlike most days in our house. Occupational therapy started @ 9 for both kiddos. I filled out a sensory questionnaire about Gav, and all signs point to Sensory Perception Disorder, not a huge surprise. Gav has to be CONTINUALLY moving, receiving some kind of input on his tiny muscles, or he literally freaks out. It's completely exhausting for both him and me. We worked on a few things today- he loved them! We rolled him up tight in a blanket and then unrolled him, and then swung him in a blanket. What a giggler! After we were done with him, his crankiness set in, but I'd be pissed too if I couldn't eat! Gav was scheduled for his MRI with contrast (anesthesia) this afternoon, so I had to starve my bubs. He did well- such a champ when it comes to anesthesia. We got to visit with our favorite anesthesiologist, which is nice, but I imagine it sounds odd to "non-medical" families to have a favorite anesthesiologist... LOL! He's scheduled for another esophagis biopsy on Thursday, so we may be able to visit with her again. It's the little things... :)</p><p>Grace did great in OT this morning, too. She made cinnamon-applesauce ornaments, loving getting messy! She got to spend the rest of the day with Mimi, even making a trip to the park! At the park she learned to kick her giant ball, and even noticed her shadow! When I came home from the hospital, Grace had speech therapy- admit it, you're totally envious of my jam-packed life- and rocked it, as usual. She's becoming so much more verbal. It's easy to get frustrated with her slow and steady pace (desiring quicker results) but when I reflect back just one year ago, the results are seriously AMAZING! Last year, on her first birthday, Grace couldn't sit up on her own, she didn't allow food into her mouth, and she made little to no noises. Today, she's walking, sometimes running (and tripping), eating garlic cloves among other foods, and talking all the time! It's too cute. Her words are mostly mispronounced, but I understand her. I've taken to calling her language, Grace-ese-ian... A combo of Grace, Chinese and Russian.<br /></p><p>Grace-ism's:</p><p>Diaper...Bye-per</p><p>Button...Booot</p><p>Ball...Bawwwl</p><p>Dora... Dohr</p><p>Love You... Too Too</p><p>Daddy... Dada</p><p>Gavin... Gah or Gahga</p><p>Brother... Bwubba</p><p>Bottle... Bobba</p><p>Water... Wah</p><p>Please... Peas</p><p>Book... Booooh</p><p>When she kisses us, she'll make the smacking sounds. When she drinks water, she'll say "ahhh" after- like it's the most refreshing thing ever. Too frickin' cute! She often sits in a quiet area saying, "Mama, Dada, Mimi, Gaah".... over and over and over again.<br /></p><p>On her birthday, she finally "got" opening presents. Now, she's trying to open every Christmas present under the tree. Good times!</p><p>She's become a tiny "bag" lady. She steals my gift bags, uses them as purses, and walks around the house picking up all the random things laying around: hair clips, bobby pins, shoes, socks, etc. At a baby shower we hosted, a mom couldn't find her son's shoe. We looked EVERYWHERE- high and low- sure enough, it was in her bag! She's become a tiny mommy. When Gav fusses or cries, she'll rush over, hug or kiss him and then pat him on the back to calm him. Also, with her baby, Holly, she puts her to bed by throwing her in the play bassinet, then remembers to pick her up and kiss her, then throws her back in (often face down!) and then throws a blanket over her. Nice to know that's how she thinks I put her to bed, right?</p><p>Well, that's enough for tonight. I'm plain tired! Good night, world!<br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-45544964665061803822010-12-13T23:49:00.002-07:002010-12-13T23:52:20.926-07:00<p>New blog Design.... Lots more to follow! I'd like to treat this as a "diary" of sorts- so that I can remember what is happening in my day-t0-day life, rather than just being for emergencies (although some of my daily life is an emergency)!</p><p><br /></p><p>Thanks for reading!</p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-23837466662823433542010-10-16T10:14:00.001-07:002010-10-16T10:16:15.508-07:00Welcome to Holland!<p>Most of us moms have seen this, but I just ADORE this saying, and when I'm feeling discouraged or overwhelmed, frustrated or let-down, I read this and I'm back on track again.<br /></p><p>Welcome To Holland by Emily Perl Kingsley</p><p style="font-family: georgia; font-weight: bold;">I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......<br /><br />When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.<br /><br />After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."<br /><br />"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."<br /><br />But there's been a change in the flight plan. They've landed in Holland and there you must stay.<br /><br />The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.<br /><br />So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.<br /><br />It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.<br /><br />But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."<br /><br />And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.<br /><br />But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.</p><p><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/Signaturecopy.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-66377324871402834352010-10-15T07:58:00.002-07:002010-10-15T07:58:57.260-07:00New Design!<p>Happy Halloween (almost!) to everyone! I had some fun with this last night- got my mind off things, for sure. Enjoy!<br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/Signaturecopy.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com1tag:blogger.com,1999:blog-905889553400399981.post-27223614953629906902010-10-13T19:48:00.004-07:002010-10-14T21:05:43.597-07:00Eosinophilic Esophagitis.....<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> 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mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"><span style="font-size:100%;"><span style="">W<span style="color: rgb(204, 102, 0);">hat a mouthful, right? </span></span></span></p><div style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"> </div><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"><span style="font-size:100%;">Gavin just got diagnosed with this chronic, long-term, seemingly heart-breaking disorder. I hate to say this, but in a way, it's almost worse than Grace's cardiac defect. At least with Grace, she doesn't experience chronic pain ALL day EVERY day. I know that is silly, but at this point, I am 100% overwhelmed. </span></p><div face="georgia" style="text-align: center; color: rgb(0, 0, 0);"> </div><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"><span style="font-size:100%;">Frustrating to think of two very chronically "ill" children. I had dreams of going back to work someday, now that seems doubtfully possible. Our days are filled with appointments, therapies, feeding battles (for both), and sleep, sweet, sweet sleep. I'm a self-described loner these days. Except for a very few close friends, it's hard to find others that understand me and my kids, and what we're going through. I'm having a pity-party day- and I'm in a poopy mood. </span></p><div face="georgia" style="text-align: center; color: rgb(0, 0, 0);"> </div><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"><span style="font-size:100%;">This too shall pass.... right?</span></p><div face="georgia" style="text-align: center; color: rgb(0, 0, 0);"> <span style="font-size:100%;"><span style="line-height: 115%;">Here's some info I found about the disorder. Happy reading!</span></span></div><p class="MsoNormal" style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;"><span style="font-size:100%;"><b style="">What is <span style="">Eosinophilic Esophagitis</span>?</b></span></p><div style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;"> </div><div style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;"><span style="font-size:100%;">Eosinophilic Esophagitis (“EoE”, formerly “EE”) is an allergic inflammatory disease characterized by an infiltration of increased numbers of <a href="http://njpaeos.org/eosinophil.html">eosinophils</a> in the esophagus (the tube that runs from the mouth to the stomach).<span style=""> </span>This infiltration causes inflammation of the tissue lining the esophagus.<span style=""> </span></span> <p class="MsoNormal"><span style="font-size:100%;"> In a healthy person, there are absolutely no eosinophils in the esophagus. There can be a few in the lining of the gut, but there should be none in the esophagus. A few can be found with reflux.<span style=""> </span>A biopsy with an eosinophil count of 15-20 or more per high power field (under the microscope), may be caused by Eosinophilic Esophagitis.<span style=""> </span>Other potential causes are Gastroesophageal Reflux Disease (GERD), food allergies and irritable bowel disease.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><span class="body">Unfortunately, many people go undiagnosed for years, suffering with what can be severe symptoms.<b style=""><span style=""> </span></b>Some people aren’t diagnosed until they are teens or adults and seek treatment when food has become impacted in their esophagus.<span style=""> </span></span></span></p> <p class="MsoNormal"><span style="font-size:100%;">Recent studies at Cincinnati Children’s Hospital have shown that Eosinophilic Esophagitis is even more common than other well known diseases that affect the gastrointestinal tract such as Crohn's Disease and Cystic Fibrosis.<span style=""> </span>Eosinophilic Esophagitis is the most prevalent of the Eosinophilic Gastrointestinal Disorders.</span></p> <p class="MsoNormal"><span style="font-size:100%;"><u>The current (*) estimated prevalence of Eosinophilic Esophagitis is 1 in 2000.</u><span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size:100%;">(*estimate as of 2007)</span></p></div><div style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;"> <span style="font-size:100%;"><b style="font-family:georgia;"><br /><br />Symptoms of <span style="">Eosinophilic Esophagitis </span>include:</b><br /></span><p class="MsoNormal"><span style="font-size:100%;"> <img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Reflux that doesn’t respond to acid reducing medication (i.e. Proton Pump </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><span class="body"><span style=""> </span>Inhibitors, such as Prevacid, Prilosec and Protonix)</span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Nausea </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Vomiting </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Dysphagia (difficulty swallowing) </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Food impactions (food gets stuck in the throat)</span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Abdominal or chest pain</span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Failure to thrive (poor growth or weight loss) </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Malnutrition</span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Poor appetite </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span>Early satiety (feeling full sooner than you should)</span></p> <p class="MsoNormal"><span style="font-size:100%;"><img src="http://www.njpaeos.org/ee_files/image007.gif" alt="blebul1a" border="0" height="15" width="15" /><span style=""> </span><span class="body">Difficulty sleeping</span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><span class="body"> </span></span></p> <p class="MsoNormal"><span style="font-size:100%;"><span class="body">In addition to the above, some people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders in general, ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food.<span style=""> </span>Behavioral changes have been reported in some children (*) and Autism Spectrum Disorders are not uncommon.<span style=""> </span></span><span class="body"><u>(*If your child has ongoing behavioral issues, social skills difficulties or any developmental issues, you should speak to your child’s Dr and consider an evaluation by a Developmental Pediatrician.)</u></span></span></p></div><span style="color: rgb(0, 0, 0);font-family:georgia;font-size:100%;" ><span class="body"><b style="">Diagnosis: </b></span></span><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"> </p><p style="color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;"> A diagnosis is made when an endoscopy is performed (by a Gastroenterologist) and multiple biopsies are taken.<span style=""> </span>Eosinophilic Esophagitis can NOT be diagnosed by symptoms alone.<span style=""> </span>An endoscopy with biopsies is the only way to properly diagnose EoE.<span style=""> </span>Even if the esophagus looks fine to the person performing the scope, the biopsies may still show EoE.<span style=""> </span>It should be noted that even if the esophagus looks normal, the presence of eosinophils (which would be seen in the biopsies) can, and often will, still cause symptoms.<span style=""> </span>However, the Dr. may also see rings or furrowing, thickened folds, microabcesses, white plaques, etc.<span style=""> </span>The pathologist will also look for tissue injury, swelling and thickening of the esophageal layers. With Eosinophilic Esophagitis, the eosinophils are limited to the esophagus and not found in other areas.<span style=""> </span></span></p> <p style="color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;">The formal diagnostic criteria should be in place soon, but Eosinophilic Esophagitis can be diagnosed when the number of eosinophils in a esophageal biopsy is greater than 15 – 20 per HPF (high power field) under the microscope.<span style=""> </span>Multiple biopsies need to be taken, as it tends to present in patches.<span style=""> </span>It is recommended that 4-5 biopsies be taken from each area of the esophagus:<span style=""> </span>4-5 from the top (proximal), 4-5 from the middle, and 4-5 from the bottom (distal esophagus), because with any less, it may be missed.</span></p> <p style="color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;">Once Eosinophilic Esophagitis has been diagnosed, food allergy testing is usually recommended to guide treatment. Skin prick testing (SPT) to different foods is the most common type of allergy testing, and may prove helpful, but EoE is caused by a delayed reaction, not an immediate reaction as is tested for via SPT.<span style=""> </span>Patch testing, which looks for delayed reactions, is also being used with some success.<span style=""> </span>However, it is not uncommon to have negative allergy testing and still react to those foods that are being tested.<span style=""> </span>An EoE reaction can range from days to weeks as the number of eosinophils increase and cause damage to the esophagus.</span></p> <p style="color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;">Please note that if you or your child have previously had an endoscopy, but the number of eosinophils was not quantified (counted), you are still able to ask the doctor to have the biopsy slides reviewed and have them counted.<span style=""> </span>Even if the biopsies are several years old, they can be pulled from storage (they are archived) and the can be reviewed / re-read.<span style=""> </span>The report can then be amended to indicate the eosinophil count, even if it is zero.<span style=""> </span></span></p><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;"> <b style="">Treatment:<span style=""> </span></b></span></p><div style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;"> </div><p style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;" class="MsoNormal"><span style="font-size:100%;">There is NO cure for Eosinophilic Esophagitis, but the goal of treatment is to eliminate the eosinophils in the esophagus, thereby alleviating symptoms.<span style=""> </span>The treatments include dietary restrictions and medications.<span style=""> </span>Since EoE is usually food-driven (caused by a reaction to certain foods), most kids and adults with EoE respond well to dietary treatments, and this may be all that is needed for many people.<span style=""> </span>However, once treatment is discontinued, the eosinophils along with the damage they do, will return.<span style=""> </span>Treatment needs to be ongoing, which may mean continuing to avoiding the food triggers and/or taking medication.</span></p><div style="text-align: center; color: rgb(0, 0, 0); font-family: georgia;"><span style="font-size:100%;"><b face="georgia"><u>Elimination Diet</u></b><b face="georgia">:</b><span style=""> </span>Dietary restrictions are guided by food allergy testing (skin prick testing, RAST, and patch testing).<span style=""> </span>Some doctors are recommending that the top 8 allergens be removed from the diet, in addition to the foods that were identified via allergy testing.<span style=""> </span>The top 8 allergens include <span style="">milk, egg, peanut, tree nut, soy, wheat, fish, & shellfish.<span style=""> </span>Beef is also a common trigger of EoE, as are certain other foods.<span style=""> </span>However, a person with EoE can be reacting to any food or combination of foods.<span style=""> </span></span>While allergy tests are used to guide an elimination diet, there can be false negative and false positive test results.<span style=""> </span>You only have to eat one food that was a “false negative” in an allergy test for the elimination diet to fail.<span style=""> </span>When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed.<span style=""> </span>This may mean just removing some additional foods from your diet, or going directly to an elemental diet.<span style=""> </span><b face="georgia"><u>Food trials</u></b> can begin once the symptoms have resolved and the eosinophils are gone, as confirmed by a clear scope.<span style=""> </span>They involve <span style="">adding back one food ingredient at a time, looking for a reaction, to determine which specific foods are causing a reaction.<span style=""> </span>Typically, one single food ingredient is trialed for a 2 week time, looking for a reaction.<span style=""> </span>Some Drs vary the time period by patient (1-3 wks, typically).<span style=""> </span>If no reaction is seen, another food can be added and the same time period applies.<span style=""> </span>Usually, when 3-5 foods are added back, the person has another endoscopy and the Dr looks to see if the eosinophils have returned.<span style=""> </span>If not, the foods are ok for that person to eat and they can move on to additional food trials.<span style=""> </span>If the scope shows that the eosinophils have returned, all of the foods that have just been trialed must be removed from the diet once again.<span style=""> </span>It could be that the person is reacting to only one of the foods, but without noticeable symptoms to confirm which one, they must all be suspected.<span style=""> </span>Some people need to scope between fewer foods.<span style=""> </span>Some even have even found that they need to trial only one food per scope, but this is not the norm.</span><br /><b face="georgia"><u>Elemental diet</u></b> consists of a medical food (elemental formula), without any proteins, either in its whole or incomplete form (pre-digested or hydrolyzed). Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.<br /></span></div><p style="text-align: center; color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;"><br />Although new flavors are available to make the formulas more palatable, kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require enteral feeding tubes, to allow the formula to go directly into the stomach. </span></p><p face="georgia" style="text-align: center; color: rgb(0, 0, 0);" class="MsoNormal"><span style="font-size:100%;"><span class="bodybold"><b><u>Medications</u></b></span> for Eosinophilic Esophagitis most commonly include steroids to control inflammation and suppress the eosinophils. Steroids are used if dietary changes do not resolve the symptoms. They can be taken orally or topically (swallowed from an asthma inhaler).<span style=""> </span>Side effects from steroids often limit long-term use of oral steroids.<span style=""> </span>Without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued.<span style=""> </span>The doctor will determine which, if any, medications are appropriate for each individual.</span></p> <p class="MsoNormal"> </p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com7tag:blogger.com,1999:blog-905889553400399981.post-36028630261518845402010-10-07T20:47:00.003-07:002010-10-07T20:51:57.517-07:00Photos!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaqsbGGyREN_FkfBqPgBTD6UJA2sSbwFsOKERvTKoG2qeNiF7Xzf81HLyESM-u55KSBGubgYCukhTpOxa3I5Ujy4JPHvgUNFMZNqWhNlobN7ln_xaSMMdIG_yGGm3t6WGfoeodfGNju0/s1600/Gav+007.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5525517531688323074" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaqsbGGyREN_FkfBqPgBTD6UJA2sSbwFsOKERvTKoG2qeNiF7Xzf81HLyESM-u55KSBGubgYCukhTpOxa3I5Ujy4JPHvgUNFMZNqWhNlobN7ln_xaSMMdIG_yGGm3t6WGfoeodfGNju0/s320/Gav+007.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLEkvUzO6WmxxDdj6FfNwI0e8pyayZ5bv2HG-_N7kc_Z14uQjJfyhRlQhACCj3lbBh8DmO_saAHXVHxzi49qWQrt0Y1qP974cEKpjb_OdcZq6RxRLvYlhVKhqJVmQLhN6NuMhqUcDww5U/s1600/Wisconsin+049.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5525517524541673186" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLEkvUzO6WmxxDdj6FfNwI0e8pyayZ5bv2HG-_N7kc_Z14uQjJfyhRlQhACCj3lbBh8DmO_saAHXVHxzi49qWQrt0Y1qP974cEKpjb_OdcZq6RxRLvYlhVKhqJVmQLhN6NuMhqUcDww5U/s320/Wisconsin+049.JPG" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrsuwU3wVPCt7ij-MtwIbrMyTRjCFdoHmpHxLfCHOFG2H1se4ZidXpTEcxon0iCQzDbIMgFW52TFe15Pjr13tIPAjmduUapv1kWp-e5xx06rC7OK_ThxdLvFCnSWVphdeoVcC7-Xjj9HE/s1600/Wisconsin+015.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5525517517691750354" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrsuwU3wVPCt7ij-MtwIbrMyTRjCFdoHmpHxLfCHOFG2H1se4ZidXpTEcxon0iCQzDbIMgFW52TFe15Pjr13tIPAjmduUapv1kWp-e5xx06rC7OK_ThxdLvFCnSWVphdeoVcC7-Xjj9HE/s320/Wisconsin+015.JPG" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZNu0nXD5mzGpG5DQHkL4-YBQtpBzkF-4AX_bT_MAPr80dqGN7fTZ04FX0AyaVZCaOa6GSi5vHCBAfPivEqyD3-aamPBzCnqQf6uwFEHC357ivPj7ooPAICqAruEu5wqYppEBilkcuo0/s1600/40914_1255349522217_1783954658_485846_6645456_n.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 206px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5525517512234364258" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZNu0nXD5mzGpG5DQHkL4-YBQtpBzkF-4AX_bT_MAPr80dqGN7fTZ04FX0AyaVZCaOa6GSi5vHCBAfPivEqyD3-aamPBzCnqQf6uwFEHC357ivPj7ooPAICqAruEu5wqYppEBilkcuo0/s320/40914_1255349522217_1783954658_485846_6645456_n.jpg" /></a><br /><br /><br /><br /><p></p><p> </p></div></div></div>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-75822056711131410762010-10-07T20:25:00.003-07:002010-10-07T20:47:53.627-07:00When Life Gets in the Way of Life....<div><div><div><p>I think I may win an award for the absolute laziest, worst, out-of-date, archaic blogger. Would you vote for me?</p><p>Well, since April- way too much has happened, so I'll keep it short and sweet (if possible- I've been known to ramble...)</p><p>Gavin is almost 9 months now!?! Where has the time gone? He's pulling to a stand all over the house, trying to walk and keep up with his big sister, who just started pulling to a stand a few months ago. Seriously- I have 2 WAY too mobile kids! Gavin has some medical issues, we've discovered over time, but we're taking it 1 day at a time, and getting things resolved. Gav had like 18 ear infections over the last 9 months, so we finally got tubes in last week- what a difference! He's babbling, saying "dadadadadadada"- of course, daddy is thrilled. I won't burst his bubble and let him know that most kids say that word first because it's easier than mama. We'll let him think he's all that and a bag of chips ;).... Gav also had a modified barium swallow in August. I fully expected normal results- we just were sick of the reflux. Sadly, he failed miserable. Penetration to all levels up to honey thickness. What a shock! So, we began simply thick and it was TERRIBLE! He had such terrible gas and stools, I actually had to go to Bath & Body Works and get portable sprays for my car, otherwise I would gag and vomit. He was drinking like 80 oz per day too, just going right through him. So, now we thicken with oatmeal... It's been going fairly well. Today we had Gav's GI scope. Again, expected everything to be normal, maybe some signs of reflux... I was wrong, AGAIN! I don't think I will go into any other procedure with expectations- I'm clearly doing this wrong!! Gav has abnormal esophagus bumps, nodules, and folds. Apparently, they did 3 biopsies, and we'll know more next week, but it looks like long-term allergic reaction. Unfortunately, we're already on the most hypo-allergenic formula on the market (and the most expensive!), Elecare. Our GI explained we will probably have to do a complete allergen workup to figure out what specifically is causing this, and then if it is in his neccesary daily food, find a medication to eliminate it, if possible. Good times! </p><p>Grace is HUGE! She's so tall!! Sadly, she's only 19 lbs (Gav is 17.8), but we're working on weight gain. She's eating by mouth, but we can't seem to get her to take in enough calories. She gets her night drip for 12 hours, at 30 calories, 2 ounces per hour. She had a cath last week. Conduit looks GREAT. Wide open. Still leaky, but they typically only replace if there is narrowing. Her pulmonary artery pressures were getting higher, and the viagra wasn't making much of a difference. The cath was to check pressures and intervene as neccesary, or possible. They tried ballooning her left side, unsuccesfully. They stented the left pulmonary arteries- success! They ballooned the right, and it helped a tiny bit, but the arteries are so close on that side, that if they were to stent, they'd lose an entire artery (collapse). They may take the route at a later date, but for now, they left it at that. The cath was supposed to take about an hour- 6 hours later, with unexplained bleeding in the surgery, she was in recovery. Grace is nothing but normal when it comes to cardiac procedures, so frightening! The next day, true Grace style, she was up and scooting, as if nothing had happened. Crazy resilient girl! Pre surgery her pressures were at 60, now they estimate them to be at 35- improvement! By Christmas, fingers crossed, we should be off all medications (viagra & aspirin). </p><p>Grace's continual "side-effects" of surgery, ie. complications, have us worried, frustrated and concerned. After talking with other heart mamas, we decided to look at other hospitals. Right now, Dr. Handley @ Stanford (Lucille Packard Children's Hospital) is looking at her records and putting together an operative plan. He's AMAZING and if there are extreme complications, Stanford is where she'll need to be. (I refuse to mention the "T" word...) </p><p>We moved into a bigger home- thank God! Our other home is still on the market, but we've got an approved short-sale, so only time will tell. Hopefully this whole thing will work in our favor, and we'll be able to buy again soon. </p><p>I considered going back to school, but with the kids and their appointments, therapies, etc. there is no time left. Which is fine, I'm okay with being home with them for a while longer. We'll see what time brings..</p><p>There is a TON I'm leaving out, I'm sure, but we'll catch up over time. Here are some recent pics of the kiddos- so big!! </p>My computer is being crazy stupid, so I'll post another blog with them... UGH!<br /><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p></div></div></div>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com0tag:blogger.com,1999:blog-905889553400399981.post-52228918806317147062010-04-02T17:34:00.003-07:002010-04-02T18:05:46.032-07:00Stomach Flu Funk!<p>Miraculously, I am the only person awake in the house at 5:30 on a Friday afternoon...</p><p>The stomach flu has stormed through the Marchese household and taken both Grace and me hostage. Gavin, Felix, and Mimi have seemed to weather the storm thus far, but it's not over till the fat lady sings, and I'm not singing! :) The last 4 days have been filled with pediatrician visit after pediatrician visit, I literally went 3 times in 1 day!! After getting a virus diagnosis, I suddenly came down with the same symptoms- and they weren't pretty. In the last two days I've drank 2 liters of Ginger Ale and managed to eat 5 crackers- it's truly a great diet plan, but I feel like I have the world's worst hangover because I'm still uber dehydrated! I can't even imagine how poor Gracie must feel- she just can't decide if she wants to lay down, sleep, be held, play.. and I haven't seen a "real" smile in almost a week. Poor baby! On top of that, we've got her molars coming in- the bottom left has come through and both the bottom right and upper left are starting to. I guess when it rains it pours, eh?<br /></p><p>We never did make it to the Disney on Ice show. We had to give up our tickets, because Grace was too sick and I didn't want anyone else to get this monster sickness, especially other immuno-suppresed kiddos. No fun!<br /></p><p>Off to bathe my babe- hopefully she'll feel a bit better. She's down to 17 lbs 10 oz wet and with clothes on... NOT a good sign... Prayers, please!!<br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com2tag:blogger.com,1999:blog-905889553400399981.post-49812972779719062682010-03-31T21:33:00.006-07:002010-03-31T22:06:16.535-07:00A Long-Awaited Update!<div style="text-align: center; color: rgb(153, 51, 0);"><span style="font-size:100%;">After much harassment (Tasha, Danelle, Andrea- you know who you are!), I have decided to visit my blog, or lack thereof... I am seriously (cross my heart!!) going to try to update this at least once a week, letting it serve as a sort of family journal. At least, that's my intent. We'll see how long I last, eh?</span></div><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">Lots going on, as usual. House is officially on the market- it makes me cringe looking at the listing price. After much debate, consideration and prayer, we have decided to short-sale our home. We owe over 230k on this small 3 bedroom 1475sq ft home, and I can't see us ever making our money back, and we've CLEARLY outgrown this home, so... on the market it went, for a measly, MEASLY 94k!! Can you believe it?!? UGH! Darn Phoenix market!! We'll be moving, regardless of the sale, on May 1st. We're renting a good friend's home, allowing them to buy the bigger home they've been dreaming of. Eventually, in a year or two, we'll buy again, since Felix isn't on the title of this current home (bizarre- since we bought it together??)... Alas, packing with two children will prove to be interesting. Felix was supposed to go to Connecticut for another 2 weeks, right up until moving day, but thankfully, his trip was cancelled- HALLELUJAH!<br /></span></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">These past few weeks have been mad-crazy too. We had Papa & Grandma from Wisconsin visit for a week while Felix was in Connecticut- what a lifesaver! </span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkew8qXLBzrgThj-XrzZujZRUgGmAh8oen22cBvCSXsCdTRM0MbwlH9y69k1oRxmK0dCwa4Zlkze5KpwOTDacEaUD79tqX0ljNkkA98hRLz2PMDVFqBQS8GC0AI7T-9MsiIApnK_JTU2Q/s1600/DSC00982.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkew8qXLBzrgThj-XrzZujZRUgGmAh8oen22cBvCSXsCdTRM0MbwlH9y69k1oRxmK0dCwa4Zlkze5KpwOTDacEaUD79tqX0ljNkkA98hRLz2PMDVFqBQS8GC0AI7T-9MsiIApnK_JTU2Q/s320/DSC00982.JPG" alt="" id="BLOGGER_PHOTO_ID_5455030416602083682" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjozQD9bRJDq68XTa9w8w1vzGmiDy_Yx6njRt2ROKdp3K_7O33V94aVw0i2ovkxTKQScCG0jk_8nW7rP09aXwis-kMSZr5ZoftkyuU3pVZzPMBwswW-tf3EmdimP6qwSUocXiOi3y9Ds6M/s1600/DSC00975.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjozQD9bRJDq68XTa9w8w1vzGmiDy_Yx6njRt2ROKdp3K_7O33V94aVw0i2ovkxTKQScCG0jk_8nW7rP09aXwis-kMSZr5ZoftkyuU3pVZzPMBwswW-tf3EmdimP6qwSUocXiOi3y9Ds6M/s320/DSC00975.JPG" alt="" id="BLOGGER_PHOTO_ID_5455030407376494674" border="0" /></a><span style="font-size:100%;">I banked up my sleep during their visit and they happily visited with their grandchildren. During the visit we managed to do a few Spring Training Games along with my aunt and two cousins.</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxUeRz5mw3nW6zZ4-wbLp99ygfNVKuRKYNNrdeh1McS2EOrDxKnVtbc5_QGdTWcHRUpkIb5gqbuUOxSxm6x3n75ku7VUygOCmvCKDst2wlMS13YRmdTAdM06fBkcn97g8QDSm3aGyVhPQ/s1600/DSC00945.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxUeRz5mw3nW6zZ4-wbLp99ygfNVKuRKYNNrdeh1McS2EOrDxKnVtbc5_QGdTWcHRUpkIb5gqbuUOxSxm6x3n75ku7VUygOCmvCKDst2wlMS13YRmdTAdM06fBkcn97g8QDSm3aGyVhPQ/s320/DSC00945.JPG" alt="" id="BLOGGER_PHOTO_ID_5455030397236450050" border="0" /></a></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2l8USz3GG1uDS7rWUf6KFvRMpWH5c6mCUvu1SrylW15GTVge8wAziPyQ6Fk5AZ2jXvGlc3Ja8g6x_pgw4_SnlsWOl1Y1jc_B9GJTZc_MN7cS4M1wSbjCSfP2lewGNf9r4_ugi2MR-dGs/s1600/DSC00923.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2l8USz3GG1uDS7rWUf6KFvRMpWH5c6mCUvu1SrylW15GTVge8wAziPyQ6Fk5AZ2jXvGlc3Ja8g6x_pgw4_SnlsWOl1Y1jc_B9GJTZc_MN7cS4M1wSbjCSfP2lewGNf9r4_ugi2MR-dGs/s320/DSC00923.JPG" alt="" id="BLOGGER_PHOTO_ID_5455028913116590306" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMTeG80l617QzYQVjhJ2eHbbziq2VI_4MPYRt8-YT8JEV38zdIBi9t-PVEwNMKGZf5vvcYTBULiefWHjPyr-INfXu9NzyTSHx4IFtbjcfVV3CTn3i_J5xhJokK-Xzsj936swsO0rVcLf0/s1600/DSC00918.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMTeG80l617QzYQVjhJ2eHbbziq2VI_4MPYRt8-YT8JEV38zdIBi9t-PVEwNMKGZf5vvcYTBULiefWHjPyr-INfXu9NzyTSHx4IFtbjcfVV3CTn3i_J5xhJokK-Xzsj936swsO0rVcLf0/s320/DSC00918.JPG" alt="" id="BLOGGER_PHOTO_ID_5455028893397136626" border="0" /></a><br /><span style="font-size:100%;"> It was an awesome visit! We even did a mini-family reunion at Oregano's with my aunt, uncle and another cousin who I hadn't seen in over 20 years!!</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPqrixg_LpOOJOMle8wNaClY5takvar9JITrJb7kXiSb4kmGBuD_Qx1S9sESrP8lMOS2Lr0iNr21QgTzfRNT6NhuyXifo9FesKtipKwMd250L_o021BuRxrzlopzl6EgozmqZYGKWc17w/s1600/DSC00958.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPqrixg_LpOOJOMle8wNaClY5takvar9JITrJb7kXiSb4kmGBuD_Qx1S9sESrP8lMOS2Lr0iNr21QgTzfRNT6NhuyXifo9FesKtipKwMd250L_o021BuRxrzlopzl6EgozmqZYGKWc17w/s320/DSC00958.JPG" alt="" id="BLOGGER_PHOTO_ID_5455030385333459426" border="0" /></a></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">Mimi, or Grammy Pammie, moved back from Michigan this month too. She's been staying with us and helping me with the kiddos- HUGE help! I seriously don't know how I could do it without all of the support from my family and friends.<br /></span></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">Grace has had pneumonia, severe constipation, gas issues, a yeast infection, an ear infection, RSV... Gavin has had ear infection after ear infection. If he keeps up his trend, we'll be seeing ear tubes in his future, poor little man! He is growing like a weed! Almost 11 pounds, slowly catching up with his sister. Grace is hovering at 18 pounds, despite increasing her caloric intake. We're back to formula food again, since she became extremely constipated, but things have improved greatly, so we'll stick with it for a bit. She's been vomiting a TON today, but apparently, it's some sort of viral infection, so we wait it out with lots of Pedialyte on hand. Good times! Grace is able to pull herself to a sit and a tall kneel from lying down, and now able to army crawl- PT is working! I about fainted the morning I walked into her room and she was sitting up playing in her crib. Now, she never wants to lie down- she's always sitting, even falling asleep most nights sitting up! Silly girl! Gavin is cooing and doing everything age appropriate. He's such a wiggle-worm. If I lay him on his belly, he'll inch worm off the mat, and onto the cool hard-wood. He's constantly bearing weight on his legs and pushing off of me. His smiles melt my heart- he's still only smiling on his terms, but when I see it, I melt. </span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz-kU2O2aGQoK4_VT0aPoAsOLZPi3pWQxTd4iI9twZ_zMlmV9kP9aTKFwJz-ZN-xWsPgTGMZmpBkhb7Amrseq2FudPs8iEWAw2tyBpPENne7PHa9xbKomIevVX_S6T6GrlVfVsykxnz0E/s1600/03+05+10_7920.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz-kU2O2aGQoK4_VT0aPoAsOLZPi3pWQxTd4iI9twZ_zMlmV9kP9aTKFwJz-ZN-xWsPgTGMZmpBkhb7Amrseq2FudPs8iEWAw2tyBpPENne7PHa9xbKomIevVX_S6T6GrlVfVsykxnz0E/s320/03+05+10_7920.jpg" alt="" id="BLOGGER_PHOTO_ID_5455028878225891298" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkhbyCZjkw8x52Fouazhy95m2UNMH8SIWotUIgDrhEbyr5xf7UQU3d_QZWOd5UukvvJgNSWJxMSJ_skTpeC-ADUkaU2-UmssqB5EMNRY8p-SqoRdB791M9g6psDx9mIgoeIV7jY5IcJg4/s1600/03+05+10_7910.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkhbyCZjkw8x52Fouazhy95m2UNMH8SIWotUIgDrhEbyr5xf7UQU3d_QZWOd5UukvvJgNSWJxMSJ_skTpeC-ADUkaU2-UmssqB5EMNRY8p-SqoRdB791M9g6psDx9mIgoeIV7jY5IcJg4/s320/03+05+10_7910.jpg" alt="" id="BLOGGER_PHOTO_ID_5455028866097158178" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgecFWmDfRpsX-YZkMpsgOWAHFXuwd7EmBg-UPKjgNsVEMqfF6vWIb0OTQ6eo5bUsiFlQjinzJFShYSxc7_UbK8va72-Tq7uB-OJprB5F2DUrw6vDlz5nMDKFE0-kbbsSN9ZPWARcZBK8g/s1600/03+05+10_7902.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgecFWmDfRpsX-YZkMpsgOWAHFXuwd7EmBg-UPKjgNsVEMqfF6vWIb0OTQ6eo5bUsiFlQjinzJFShYSxc7_UbK8va72-Tq7uB-OJprB5F2DUrw6vDlz5nMDKFE0-kbbsSN9ZPWARcZBK8g/s320/03+05+10_7902.jpg" alt="" id="BLOGGER_PHOTO_ID_5455028858898967490" border="0" /></a><span style="font-size:100%;">Both of the kids were SPOILED by Papa & Grandma, of course. Grace got her own car, which she adores. We try to get the mail in it every day, when the weather permits. She also got her own drum set, so she's continually banging on her drum. Gavin got a new remote control mobile. What a great concept! He will lay quietly in his crib cooing and chatting with the animals, while his glow worm sings soft lullabyes.<br /></span></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">Tomorrow we are doing Disney on Ice with Grace, a Hope Kids event. I'll post some photos. Hopefully we'll have a smoother experience than my cousin Danelle did with her son.<br /></span></p><p style="text-align: center; font-family: georgia; color: rgb(153, 51, 0);"><span style="font-size:100%;">So, that's it for now- stay tuned for another update, coming your way soon!</span></p><p><span style="font-size:100%;"><span style="color: rgb(153, 51, 0);font-family:georgia;" >Cheers!</span></span><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com4tag:blogger.com,1999:blog-905889553400399981.post-5317656893363628192010-02-18T20:54:00.013-07:002010-02-18T22:32:23.094-07:00Colicky Craziness!<div style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX-8AYdq4YnY3NHD_3BmhyphenhyphenJIxwVcMvxEN79mL9wJt4pwfhaT6C9EM1gu5FB-XkZ_ZS0LepUy3YoaoQ96DdL_WdgNCiuyQzuMzzbQ_suHWCuvPdjU_h_MuqFobTQh5mKT57o8SfRHbc2ZM/s1600-h/DSC00032.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX-8AYdq4YnY3NHD_3BmhyphenhyphenJIxwVcMvxEN79mL9wJt4pwfhaT6C9EM1gu5FB-XkZ_ZS0LepUy3YoaoQ96DdL_WdgNCiuyQzuMzzbQ_suHWCuvPdjU_h_MuqFobTQh5mKT57o8SfRHbc2ZM/s320/DSC00032.JPG" alt="" id="BLOGGER_PHOTO_ID_5439819574182529026" border="0" /></a>WHEW! I'm still alive- although, you probably couldn't tell by my lack of blogging. What an exciting two months we've had... (okay, so it really has been 2 whole months since my last post)...</span></div><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">The Wisconsin trip was a blast! We spent most of our time with family, doing family dinner, having Grace play with her cousins, <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVTJJQ6PppQOyoDIchMwdODlGbCFyDJm5jNS8w1F6Ca8qACJ6VRcIhvYZI68T1vvj3o6ztOiOVIkKeJn3DRTgxe8oFupgEJVzEJUrk4SgYs01wpv97o8W06qyqFv495Q884lX7mEs6jw8/s1600-h/DSC00327.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVTJJQ6PppQOyoDIchMwdODlGbCFyDJm5jNS8w1F6Ca8qACJ6VRcIhvYZI68T1vvj3o6ztOiOVIkKeJn3DRTgxe8oFupgEJVzEJUrk4SgYs01wpv97o8W06qyqFv495Q884lX7mEs6jw8/s320/DSC00327.JPG" alt="" id="BLOGGER_PHOTO_ID_5439820523468137170" border="0" /></a>celebrating the new year with my step-brothers, and even visiting friends from high school. Grace wasn't such a fan of the cold, but neither were we. <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipHjCxvUnD2A9gyCckSS20RrtJK40plNXG-yc2IzT9QI6UvMcy29E7JF4HSchIM_TGz7wyNT0Onv-MbZVbzrgYWohb5WzapIpBtnY-kMT2huKlDfeaqaCIwV3ccfWRxYlluCu7tPHPArs/s1600-h/DSC00259.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipHjCxvUnD2A9gyCckSS20RrtJK40plNXG-yc2IzT9QI6UvMcy29E7JF4HSchIM_TGz7wyNT0Onv-MbZVbzrgYWohb5WzapIpBtnY-kMT2huKlDfeaqaCIwV3ccfWRxYlluCu7tPHPArs/s320/DSC00259.JPG" alt="" id="BLOGGER_PHOTO_ID_5439821021651255826" border="0" /></a>Getting her in and out of the vehicle in -20 windchill weather was, well, unpleasant. <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUtzAxBPiN1tdMsk55gJ87mP7aOl6nr-kbJFKrfNeVrPUVR_j_IqT1-iVZf5Ggn-7wTM2xUidlnpbpgAO4f6M4cTONV_i9NqvxMSAcRfwDk_QFK8eY23arNfvFuXEzrVhlCWubk3eFwHU/s1600-h/DSC00252.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUtzAxBPiN1tdMsk55gJ87mP7aOl6nr-kbJFKrfNeVrPUVR_j_IqT1-iVZf5Ggn-7wTM2xUidlnpbpgAO4f6M4cTONV_i9NqvxMSAcRfwDk_QFK8eY23arNfvFuXEzrVhlCWubk3eFwHU/s320/DSC00252.JPG" alt="" id="BLOGGER_PHOTO_ID_5439820167954435682" border="0" /></a>It didn't snow the entire time we were there- I was bummed, as I was really looking forward to a majestic quiet evening. The first snowfall is always so magical- it's quiet, and it's like a fresh start. I think the best I've heard it described was in an episode of Gilmore Girl's. Yes, I watched that show. Yes, I loved that show. Yes, it was entirely unrealistic.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Rewinding a week or two before our Wisconsin trip, and possibly to one of my more recent posts, I referenced adopting another baby. Grace's birth mom was pregnant, and didn't seem sure as to what she was going to do- it was another little girl. The timing wasn't ideal, but we would have been blessed and thankful, and stressed, but blissful. God had his hands in this, as Grace's mom decided to parent her, and we were able to focus on Grace. After examining the timing, and getting ready, we decided that maybe we were ready, after all, to have another baby. We debated trying on our own (I battle with PCOS, and my husband with less than ideal sperm counts), knowing the cost and stress involved, or adopting again. After praying, and talking with friends and family, we knew in our hearts that we were meant to adopt. We decided to stick with the agency that finalized Grace's adoption, AASK (Arizona Adoption of Special Kids), a very small, slower agency. We figured on a 2-3 year wait, at max, and prepared our birth parent letter.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Back to Wisconsin... while there, I got a text from the social worker advising me to check my email. A local couple in their 30's were unable to financially keep their baby boy, and they were looking for families. We fit their ideals- would we be willing to submit our profile? We prayed, and decided that yes, we would. We figured it was out of our hands, and that 4 other families were being submitted too, so if it was meant to be, it would happen, and if not, God would provide. Honestly, we didn't think we'd be chosen as I was very honest about Grace's heart defect, and about the fact that we had adopted her- I figured they would choose someone who was unable to have children, giving them the opportunity to be parents. So, we got on the plane to come home, and got the phone call the next morning- they picked US!!! The parents wanted to meet us, and the baby was set to be born within 6 days. Wait- 6 days?!? OMG!! We scrambled- we wanted to get stuff, but you never know with adoption, the parents can change their mind at any point until consents are signed. We debated- do we plunge both feet forward, or do we wait? We plunged, and thankfully so! We bought a dresser, had a painting party, and received boy clothes from friends, and even strangers (friends of friends). We are so very blessed by the love and support we receive. My friends insisted on throwing me a shower, so I got my essentials, and tried to calm my nerves. On January 17, 2010 Gavin Wyatt Marchese was born. Gavin weighed a tiny 6 lbs, 4 oz and was 19 inches long.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRddHINI0v773XlU049zzZf_LPhkf7mswFK9Nd9W14E0st_cSpEro8Es72EBUc1a1JD1ciAjMe7BlUBG5g6QOxUNtAbRodIIfrYpEstPZlW9zMwIHuCzJOWzkLHgtxSrZSe8XooeetRc/s1600-h/01+20+10_7421.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 227px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRddHINI0v773XlU049zzZf_LPhkf7mswFK9Nd9W14E0st_cSpEro8Es72EBUc1a1JD1ciAjMe7BlUBG5g6QOxUNtAbRodIIfrYpEstPZlW9zMwIHuCzJOWzkLHgtxSrZSe8XooeetRc/s320/01+20+10_7421.jpg" alt="" id="BLOGGER_PHOTO_ID_5439813414580548034" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAu_NvSf9lXtc5Z4WSmu-PRs5cu_a0W0TuXKnWkesnNZP-fW0r1Q6oEsT0w8MJTcaULVQeDYXWwd0mmL2aZWH6Eh4Kx7KVI5qY-o7zHdaqDms7bIcM3dcYf7N0Wpk90MDPubmTNzK1PkY/s1600-h/01+18+10_7291.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAu_NvSf9lXtc5Z4WSmu-PRs5cu_a0W0TuXKnWkesnNZP-fW0r1Q6oEsT0w8MJTcaULVQeDYXWwd0mmL2aZWH6Eh4Kx7KVI5qY-o7zHdaqDms7bIcM3dcYf7N0Wpk90MDPubmTNzK1PkY/s320/01+18+10_7291.jpg" alt="" id="BLOGGER_PHOTO_ID_5439813410077450130" border="0" /></a>We were able to be there immediately after birth, and we were the first people to ever feed our son- AMAZING! You have to imagine how foreign this was to us- we never had the opportunity to do any of this with Grace. Heck, we couldn't even hold or touch Grace for the first few weeks! He is perfect in every way. Being the neurotic heart mom that I am, I took him to the doctor and grilled our poor pediatrician. Our pediatrician, one of the most amazing men, simply laughed at me, and told me that try as he might, he just couldn't find anything wrong with our son. He proceeded to tell me that this was common for parents of special needs kiddos.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Gavin came home 24 hours after birth and was a perfect angel, until about 2 weeks ago. Then, he started crying non-stop, especially in the evening, arching his back, tightening his stomach, screaming and screaming and screaming.... Couldn't take it anymore- thought I was seriously going to lose my mind. Once he starts crying, Grace chimes in too. Went to the doctor. Diagnosis: colic. We're switching to an elemental formula, one that's already broken down so his stomach doesn't have to work so hard. In the meantime, we've tried pretty much every possible hold, swaddle, swing, stroller, walk, car-ride, etc. We tried gripe water and it worked like a miracle for the first night, but not so much there after. We are officially in a bad place! Hoping and praying that this gets better- I am massively sleep deprived, and my hubby and I are irritating one another non-stop.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Grace has started a blenderized diet of real food. I couldn't handle the puke fest every day, and figured there had to be something better and healthier than what she's been doing. She's almost 15 months and still on an overnight drip- time to get things in check. So, we went to GI with high hopes.... and got shot down. I won't name names, but our experience with them on this visit was awful enough to prompt me to write a letter. The letter still hasn't been written.... but I'm still pretty peeved. So, I did some research. There is a book about this kind of diet written by two professionals out of Tucson. I emailed one and begged for a name of an RD, and was emailed immediately- Hallelujah!! In the meantime, I dove in feet first, taking Andrea's lead (<a href="http://simmonsfamilyupdate.blogspot.com/">Owen</a>'s mom). We've had a few hiccups, but mostly she's doing AMAZING! She has more energy, and seems to be in a better mood. We've found she's allergic to bananas and possibly milk, but we're being creative. The RD is putting together a more balanced menu for us, and trying to lessen volume but increase calories. Either way, this is the BEST thing we've ever done!<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Life is obviously chaotic for us- a CHD toddler and a colicky infant, could it get any more exciting? :) We take it gladly, except in the middle of the night, but even then, we survive. Grace is on the cusp of crawling, her hips are a bit too weak (low-tone from being a preemie), but we're getting there. She can stand holding on to an object for almost 20 minutes.<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHhyImcFNorZgpKyIUcrxL18PQzpBYUJMe1l6hCjXXwRYI6hIONz1E_iG7uL7oRrmYf6qRAq8X8TZ064VmAql7kTPrLX4QyWnfYbnA-5QTHk1h7h8imIG6ciV-bK5thAPTOnqBkSgc57k/s1600-h/02+11+10_7461.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHhyImcFNorZgpKyIUcrxL18PQzpBYUJMe1l6hCjXXwRYI6hIONz1E_iG7uL7oRrmYf6qRAq8X8TZ064VmAql7kTPrLX4QyWnfYbnA-5QTHk1h7h8imIG6ciV-bK5thAPTOnqBkSgc57k/s320/02+11+10_7461.jpg" alt="" id="BLOGGER_PHOTO_ID_5439813385125111074" border="0" /></a>She's got PT, OT and feeding therapy at home, and then PT at PCH. Heart-wise, we're looking good. We've increased her viagra (the pressures were still a tad high), but we're hoping to not have a cath until this next winter. We had an RSV scare this past month, but Grace made it through with flying colors- mostly because of having access to Synagis. Seriously, that is a blessing!<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">We've been watching the Olympics (well my husband has), and I heard from another heart mom, Melodie (<a href="http://heartbabyscarlett.blogspot.com/">Scarlett</a>'s mom) that Shaun White is a CHD survivor, dx'd with Tetralogy of Fallot. The same thing Grace has! So, I read up on him, and I'm completely confused.... he's only needed 2 open heart surgeries, both before the age of 1... So, what did he do? Why is it that every other TOF kiddo has multiple surgeries throughout life, as they outgrow their conduit? Maybe there is another kind of TOF?<br /></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Throughout this mass of craziness, I've had amazing support, as mentioned above. But, seriously, Tasha & Adam, (<a href="http://goncechronicles.blogspot.com/">Bree</a>'s parents) I couldn't have done this without you. Your support, at all hours of the night, has been life-saving. I'm thankful to have such a great friend living so close (5 houses away), and Grace and Gavin are blessed to have such wonderful kids to play with!</span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">Making a Valentine's Day card for Daddy- so sweet! She ate the crayon and colored her face instead...<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe_STgT_RKpRjvCpr5jT7VZXu_-mc4Lx7zx6unykoFtKulcR4ZmgDjFQ3TcLMI9e9L9Aihs_8GBduIOazD3J50TQVhUpNnmrsKYt7Q01ybXkfYl86tpbz3DY724P6JLdiMTRPVBfxqdyQ/s1600-h/02+11+10_7444.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 306px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe_STgT_RKpRjvCpr5jT7VZXu_-mc4Lx7zx6unykoFtKulcR4ZmgDjFQ3TcLMI9e9L9Aihs_8GBduIOazD3J50TQVhUpNnmrsKYt7Q01ybXkfYl86tpbz3DY724P6JLdiMTRPVBfxqdyQ/s320/02+11+10_7444.jpg" alt="" id="BLOGGER_PHOTO_ID_5439813390994948290" border="0" /></a></span></p><p style="text-align: center; color: rgb(153, 51, 0);font-family:georgia;"><span style="font-size:100%;">A lot, right? WHEW! We made it... and I again, will set a resolution to blog more. The little stuff and the big stuff. Night all!</span></p><p style="text-align: center;"><span style="color: rgb(153, 51, 0);font-family:georgia;font-size:100%;" >PS- Pray for <a href="http://listeningthruthenoise.blogspot.com/">Gabriella</a>! She's on the transplant list, but she's running a low-grade fever. God Bless that little warrior!</span><br /></p><p><img class="centered" alt="post signature" src="http://i867.photobucket.com/albums/ab239/annekemarchese/10beaf75.jpg" /></p>Anonymoushttp://www.blogger.com/profile/11384290390804099018noreply@blogger.com3