Gerardsmomutah

BURGERS & BEER: A Hidden Gem in Ogden — THE OGDENITE : In a week, the Garden Grille turns out 60+ burgers at around $20 a pop (burger and truffle fries). A lot of guests are shocked by the quality of the food. And it brings them back.

It takes a quiet day to have enough time to reflect on blessings and Thanksgiving. Today is that day. It’s been a little over a year since my last update about Gerard , his health and our family, and there is much to share.  Please excuse any typos or writing tense errors as I’m trying to rattle this off while I have time. Gerard is ten years old. He will turn 11 on December 24, 2018. He is still a very good-natured, sweet boy and is fighting IBD like a warrior. He makes good grades and would love to be able to do more than is possible on any given day, just like most young boys. Last fall, we moved Gerard to a new school for his mental and physical wellbeing. The school he attended for third grade was fancy and new, a great big building with the latest and greatest technology and close to our home. It was amazing that there were some great Title 1 programs, and his teacher was too fabulous for words. But the bullying on the playground and on campus was unbearable...

Summer 2018 It's been a wonderful year. We've continued to fight the good fight. And Gerard is officially "on the charts." That means the growth charts. What many of you don't know is that DCFS was called as required by my health care team, and they made sure that I wasn't "starving" my poor boy. That was a rough day. And everybody has bad days. Yes, he was in "failure to thrive" again after my last summer's update. Here we are! Back again to let all of the supporters and friends know that their money and prayers have gone to good use. Two years ago I could not have dreamed we would be navigating chronic illness so well. Two years ago Gerard was down to 40 lbs. Yes. It was a lot of dark days when I didn't know who to call because all of the doctors had no answers. No advice. I'd get pitiful looks from friends and strangers. And friends started avoiding us. When we needed them most, a lot of friends exited left. And right....

Update on Gerard's year and health. The good news: Gerard progressed from third grade (all A's) and will be going to fourth grade next fall. This is nothing short of a miracle! He missed ten days of school (instead of 50 like in second grade), and somehow managed to be strong enough to play a role in Ballet West's Nutcracker, affectionately known in the cast as "Spank Boy" for Cast A, which literally brought him back to life in a way I'd never imagined. He loves to dance and perform. Trips to Salt Lake to rehearse did wonders for his self-confidence and as tiny as he was. He matured leaps and bounds by being around professional dancers and other boy ballet dancers. He's become a voracious reader, and though he still enjoys math and science, he's more inclined in the arts at this time. He still enjoys kicking the soccer ball around, and also has recently learned to ride his bike after having to put that on hold for two years. If you zoom in on his...

Happy Birthday Gerard! This is for you. All of you who helped Gerard (and his parents) make to another milestone. Gerard turns 9 years old tomorrow, on Christmas Eve. To all the followers of Gerard and his health, supporters of our family and to the GoFundMe account last summer that sent G to the Mayo Clinic in June, a very big thank you for your support. Our friends helped us to get where we are today. You did it! See? You helped us! You helped Gerard get the care he needed! Yes, Gerard is wearing the same sweater he wore last Christmas, and that's just fine! He's here. We're all here, and we're all grateful. There's more to update but I'm short on time. He's still in chemo...and there's no end in sight. He's in a new school that he likes a lot. He has only been absent for illness a few days. He's been well enough to perform in Ballet West's Nutcracker as a Party Boy (Spank Boy role), which he absolutely loved and will be a lifelong...

Have you ever had a doctor's referral service call you, leave a message to call them back, then when you do call them back they won't tell you what the referral is for? Outsourcing wastes so much time and money. Wasteful healthcare beauracracy.  #solame #notfunny #cantmakethisup

We've been home from The Mayo Clinic in Rochester, MN for three weeks. Three. Whole. Weeks! Life has fallen back into the routine of running back and forth to Primary Children's Medical Center for follow-up visits and coordination of the continuity of care in Utah. It's beyond amazing how efficient things were there at Mayo after we got settled in. And it's beyond amazing how, with just one doctor (pediatrician) coordinating other specialist visits, how easy it was to get through the system by "waitlisting" for openings getting same-day appointments. Yes, we saw medical students, interns and residents, but boy oh boy, were they the cream of the crop! I can say that I miss the service, the professionalism and the overall compassionate care G received. Now that we're home, I'm still in shock over how it's been three weeks and some of the offices have not returned my calls to coordinate simple visits as ordered by the Mayo docs. It just "i...

Gerardsmomutah: Post op

We've been home from Mayo almost a week now. I miss it already. I miss the professional friendliness, the transparency of medical records, doctor's notes and the seamless way the system works administratively. I miss waiting "standby" to get in when we need to get in, and I miss the maximum allowed family members in the clinic. It's a crammed space here. I miss the overall seriousness that we have a kid who is sick enough to be in the said space to begin with. And I miss people looking me in the eye to talk to me = not a computer screen while we discuss why we are here and what happens next. What happens next? We wait 3 weeks for a test. And then we wait some more. Because as usual, Gerard doesn't "look" sick on the outside. Except they can't see that he's blistered and sunburned under his t-shirt. Because the sun penetrates the sunscreen and the tee and he burns because of the medication he takes. All before 9:30 am. Two layers...

How is it that providers know you are paying for medical care out of pocket? You're referred to as a "9" or an "8" or another secret charting system, which, if you're anything like me, you crack the code immediately by looking left and right, and listening to comments.  We aren't alone. Half the folks we see are paying themselves. This is s last resort spot - think "destination" healthcare where they are expanding! It's on the front page of all the papers. Genomes, biomes and hormones. Everyone who works here is sharply dressed, educated and polished. Reputation is like the Ritz, Disney and The Met all rolled into one. Let's face it, the art here is worth the trip. I digress... Mayo. Where the world comes for amazing, state-of-the-art care. Where you may wait, like us, a fifty with an 8-yr. old for five hours (yesterday), to see someone as a "standby" patient (called, "checkers") and not see anybody. Because, as it t...

Having the kind of talk we had today is not something I've ever prepared for, even under our circumstances of "sick" mode over the past year. We leave for Mayo tomorrow, and Gerard has been so very tired since his chemotherapy treatment. He sleeps a lot. His time awake is spent going full blast - and he's wearing himself right out. Here's why... G-ism of the day: G: Mom, what would you do if I died, right now, today? Me: I would be very, very sad. And I would think that God must need you more than I need you right now, today. (Tearing up, gulp). What would you do if I dided today? G: I'm not sure I could live without you. I would miss you too much. I would be so sad. Let's not talk about this right now, OK? Me: OK. Is there anything else you wanted to ask me? G: I'm going to take a rest now. If that's OK. Please wake me up in an hour. OK? Me: OK. That's a great idea. I think the "birds and the bees" talk will be so much e...

Gerard has requested cards/notes/silly messages to help him overcome his medical facility anxiety while we navigate Mayo in Rochester. Please mail cards to: Gerard Hernandez; 1439 Brinker Ave. Ogden, UT 84404. We cannot thank all of you enough for your support during such a challenging year. We're excited for solutions like only Mayo can provide, based on the stories of our friends.

How to handle life when you need help. Accept it. Because you know that when you can help others, you do. So...here it is. And here we are. I don't feel the need to share every single symptom or detail of what's going on with his illness, because I'm consistently met with the reaction of, "Well, he looks great to me!" OK. He looks great. But what you don't see is this happening every day after school: His fatigue level is such that the minute he sits in the car, he's flopped over in five minutes max. It happens at the dinner table (again), which is what happens when he's about to flare. Why is this happening? We don't know. He has a hematoma on his cheek because he fell out of his bed on Monday night. (He didn't want to wake me up)... My kid! Which is why we need to get to the Mayo Clinic to figure this thing out. Yes, I realize he looks great to everyone. Yes, that is the stigma of a "hidden" disease. What don...

Today I decided to unbury myself from the mountains of medical bills on my desk. We have insurance, yes. We do. It doesn't cover much. It doesn't help much. But it does help a little, and right now a little is better than nothing. The thing is, we aren't seeing results in G's treatment the way we (feel that we) should be after all this time. June first, he's set for chemo again. And I don't want to take him this time. Crazy thoughts... perhaps. So I sent records to Mayo Clinic in Rochester to get the ball rolling several months ago knowing that we'd need their expertise. We have referrals from his doctors, but insurance is denying that he's getting adequate care here in Utah. And the bills are rolling in from all directions. Bills for "reading" medical records. Yup, they can do that. Mayo Clinic bills to the tune of nearly $2,000 today. Just for their doctors to look at two images. Two. Images. And read them, apparently. Can I raise ...

Sunday was Mother's Day. Thank you to all the mothers out there. You have my greatest admiration and respect. Especially all of the single mothers. They are amazing. A day of reflection. I miss my grandmother. I miss Sunday weekly talks with her. She was like a mother to me when mine could not be. A day of happy tears, getting a beautiful card handwritten for the first time from my boy, sad tears (my mom is gone on to the next world, and I miss her, too), and anxious tears. I never, ever thought I'd be able to have a child. In fact, I was told I would never carry a child to term. It was true. It was a day of how's. A day of me running questions in my mind. I spent the day with my guys (husband and son) and we had a lovely day, indoors...because... rain. I'm always grateful for the rain. We decided after lunch to go to see a movie. My choice. Seriously? No action or cartoons. Yes...! A friend suggested "Miracles from Heaven" when we talked about my ...