tag:blogger.com,1999:blog-77738536890953312672024-03-05T17:44:06.155-05:00JAM sessions: Lessons learned through a micro-preemieMy son was born at a gestational age of 23 weeks, 21 weeks into my pregnancy and 17 weeks before his due date. He was 1 lb 5 oz and about a foot long. Those are the numbers, and this is his story.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.comBlogger186125tag:blogger.com,1999:blog-7773853689095331267.post-40537454893933998232020-03-13T09:31:00.000-04:002020-03-13T10:44:17.274-04:00How to Stay Safe AND Sane in the Face of Disease -- Advice from a NICU ParentYou've just been told school is cancelled. For weeks. To prevent the spread of disease.<br />
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I'm sorry friends, I've been there. When we were told that Jonathan needed a <a href="http://momofa23weeker.blogspot.com/2015/01/how-third-year-of-isolation-was-best.html">third winter of isolation, I wanted to cry. And<b> it was the best choice we could have made</b></a><b>. </b>You see, to a micropreemie, RSV is a lot like COVID19. And we did not want to see our little one intubated again.</div>
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Isolation for a micropreemie meant this: No large gatherings, no church, no grocery stores. If we broke these rules, even once, even just to attend a wedding of a loved one, we risked him loosing much needed in-home therapies. So we never broke these rules.</div>
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<i>And it worked</i>. When we did take Jonathan out of isolation for his first year of preschool, he got sick. He was hospitalized and he needed oxygen. But he didn't need to be intubated, he wasn't at risk of death, and his hospital stay was minimal. We'd given him time. And sometimes, in the case of micropreemies & the new Coronavirus, time is a huge gift.</div>
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<b>HERE'S WHAT YOU NEED TO KNOW ABOUT HOW TO STAY SAFE AND SANE WITH SMALL CHILDREN AT HOME AND SEVERE ILLNESS IN THE COMMUNITY.</b></div>
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<b>IN GENERAL:</b></div>
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<li><b>DO take health professionals seriously. </b>They know what they're talking about. </li>
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<li>Don't gather with lots of people</li>
<li>Limit time in grocery stores & don't take small kids to the store. Let's face it, they're not good at not touching things.</li>
<li>Stop the spread of this coronavirus. <i>We didn't get the flu shot when Jonathan was a micropreemie because we were afraid of getting the flu -- we were protecting him from exposure. We used sanitizing wipes at the grocery store, hand sanitizers at church, and practiced social distancing at work -- not because we were afraid of being sick, but because we were afraid that if we got sick, we'd be exposing HIM to the illness. Now the tables are turned. Kids are fighting coronavirus well. But adults aren't. And we need to stop the disease. We do that by stopping all exposure.</i></li>
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<li><b>DO scrub in. </b>Take your rings off for the season. Any time you enter a new building or come home from work, scrub hands up to the elbows and sing the ABCs as you lather. Get under those fingernails. Keep using those good scrub-in techniques every time you use the restroom or a tissue, etc. Get some good hand lotion so that when your hands get all dry from all the hand washing, you prevent cracking & bleeding.</li>
<li><b>Teach your kids good hygiene skills. </b>Wash, wash, wash. When you eat, when you use the restroom, when you touch your face. Stay clean.</li>
<li><b>Social distancing works. </b>If you can't touch their outstretched arm and they can't touch yours, that's a good amount of distance. It doesn't mean don't cuddle with your kids, they need cuddles to feel safe and loved. Just ONLY get that close to your kids -- distance yourself from others.</li>
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<b>IF YOU HAVE AN IMMUNOCOMPROMISED FAMILY MEMBER:</b></div>
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<li><b>CONSIDER changing clothes when you get home</b>. When our daughters came home from school or when we came home from work, we changed right into our PJs and scrubbed in. We didn't touch the isolated micropreemie until after we got changed. It became part of our routine because RSV lived on clothing. Coronavirus may be different, but it is an easy step to take. </li>
<li><b>Don't </b>take that family member shopping with you. Just don't.</li>
<li>If you feel sick, even just a little bit, limit or eliminate exposure to that family member. For us as parents, this meant swapping who took care of the little one.</li>
<li><b>Practice social distancing</b>. Where possible, keep the family member six feet away from others.</li>
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<b>SCREENING VISITORS</b></div>
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Grandparents came over, my daughters still had occasional play dates, and my son had in-home therapy three times a week. How did we manage? My rule of thumb was fairly simple:</div>
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<li>Tell visitors to stay away if they're feeling sick.</li>
<li>Ask visitors to change clothes and scrub-in.</li>
<li>If potential visitors think these measures are extreme, just don't have them over. It's a sign that they're probably not taking illness as seriously as they should.</li>
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<li>If a colleague didn't know how to cover a cough appropriately and used his hand instead of the crook of his arm, I noticed. If he said "I just have a small cold, it's okay." I remembered that RSV looks like a small cold in adults, and as soon as he left the office space, I sanitized EVERYTHING.</li>
<li>Coronavirus is similar. It doesn't look like much in some, and can be deadly in others. If people are downplaying their own symptoms and not keeping to themselves, then I need to keep myself away from them.</li>
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<b>BUT HOW DO I STAY SANE?</b></div>
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<li><b>DO go outside</b>. Perhaps don't go to the farmer's market, but if you have a back yard or even just a patio, play there.</li>
<li>When it gets nice outside, <b>OPEN WINDOWS. </b>Fresh air does wonders for the soul.</li>
<li>Play music.</li>
<li><b>Limit exposure to others, but don't cut off all ties</b>. If people are well, haven't been exposed to those who aren't well, and are willing to scrub in -- then allow small groups to visit. Keep groups smaller than eight, keep social distancing, and use your best judgement about activities. Again, back yard activities are great. </li>
<li><b>Facetime. </b>Use technology to connect to other people. Not just by facebook posts, but by real interactions like (remember when?) phone calls.</li>
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<b>AND HOW DO I KEEP MY KIDS SANE?</b></div>
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<li><b>Have some structure in place</b>. But keep it loose. </li>
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<li>Tell kids they must do two chores. Bonus there: then you're house is clean and you feel more in control.</li>
<li>At the same time give kids a chance to just play, knowing that (like summer break) too much freedom just leads to boredom and cranky kids.</li>
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<li><b>Plan ONE creative activity a day. </b>Don't over-plan or you'll burn out. I hate pintrest, but if you're so inclined, seek out pintrest for ideas.</li>
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<li>Play-do</li>
<li>Board games</li>
<li>Make a science experiment</li>
<li>Plant a garden</li>
<li>Paint a room</li>
<li>Create box monsters</li>
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<li><b>Have some time focused on school / educational goals. </b> If your school isn't moving to online learning, you can still help kids meet their goals. You might not have time to homeschool, but have your kids touch on math and reading/writing skills each day. Have 15 minute refresher sessions. Make it fun, or make it the chore they have to do before they can play Minecraft. Either way, keep the brains going. You and your kids will feel better with some of this structure still in place. And small amounts of time focused on learning really does make a big difference. [When Jonathan was in isolation, we made sure there were five minute blocks of his day scattered throughout where we practiced the skills that occupational and physical therapists had as their focus for that week.]</li>
<li><b>Go for walks and bike rides</b>. <b>Invite friends along.</b> It's a great way to get outside, and as long as you're not in a busy city, you're probably practicing social distancing.</li>
<li><b>If your community doesn't have active cases</b>, invite a friend over at a time. Don't have a huge party, but kids can still have play dates as long as they're scrubbing in. In some cases, this is inevitable as family and friends are needed to cover childcare responsibilities. Just keep the group small and have hand sanitizer in place.</li>
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<i>Note: I am not a healthcare professional and all advice should be seen as non-medical. Use reason and <a href="https://www.cdc.gov/coronavirus/2019-ncov/index.html">seek the advice of true professionals</a>.</i></div>
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-4823023120344274012017-05-10T11:49:00.002-04:002017-05-10T11:49:30.077-04:00Where's your gaze?<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;">I asked my son's eye doctor when my son would be able to tell us what his tunnel vision was. We know he has tunnel vision, when would he be able to tell us what he couldn't see around the edges? The doctor said something profound.</span><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><span style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;">The doctor said that my son would never be able to tell us where his blind spots are. Because to him, they aren't blind spots. It's not like he sees black or sees through a tunnel. He just sees what he sees and doesn't see the rest. Like I don't think of what I'm not seeing behind me, he never thinks about what he's not seeing next to him or in front of him or where ever the spots without vision are. And most of the time his brain fills in the blanks for him based on what it remembers seeing moments before. </span><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><span style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;">This has caused problems for my son when, for example, he is SURE that the foot rest on the rocker is up because he saw me reclining as he approached, so he puts his hand out confidently to climb on to my lap, only to discover with a horrible thud to the ground that, since leaving his field of vision, the foot rest had been pushed in and I'd sat up so I could pick him up. </span><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" /><span style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;">His vision reminds me that sometimes as humans, we need to remember to turn our gaze away from the things we normally see and look for the things we don't see. Because if we don't turn our gaze elsewhere, those things, those places where we are misunderstanding, will never be understood. We all have tunnel vision. And we all can be tripped up by our misunderstandings.</span><br style="background-color: #f6f7f9; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 12px;" />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-63191559564369745082017-05-06T10:24:00.002-04:002017-05-06T20:57:12.209-04:00How AHCA trickles down to social justice issues<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
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Here's what it's not. Justice is NOT that I, as an advocate for my son with special needs, can get him the services necessary to obtain equal access to educational material. Because I'm a squeaky wheel he has an FM system. Because we asked, he'll have braille. This is great for us, but were we not squeaky wheel parents asking for an interpreter, he'd never have gotten an FM system, his language wouldn't have advanced this much in a year.</div>
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So the analogous p<span class="text_exposed_show" style="display: inline; font-family: inherit;">arent who doesn't have the resources to fight? The school will assume no FM system is necessary, saving a buck or two but ultimately decreasing that hard of hearing child's ability to process what's happening in the classroom.</span></div>
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But guess what COULD make injustice even worse. Loss of federal funding to schools through the new AHCA bill. See, there's this little line on my son's IEP form that says if he qualifies for medicaid, I allow the school to bill his medicaid account for health services received at school. Screenings, etc.</div>
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While my son doesn't qualify for medicaid, the school relies on that extra money. It allows their special education budget to expand to meet more of the needs of the students.</div>
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Notice, from my first long paragraph, not ALL the needs of students. Funds are still stretched thin.</div>
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Folks, TALK TO YOUR SENATORS. Let's not let the new AHCA bill pass.</div>
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And if they don't listen to stories about special needs kids, let's talk to their pocket book. WITH SERVICES early on, my child will live a self-determined independent life as a DeafBlind adult. [He has Usher Syndrome, a genetic condition unrelated to prematurity that will take his sight sometime in his second decade or beyond.] We expect him to have a job, live apart from us,etc.</div>
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<span style="font-family: inherit;">WITHOUT SERVICES EARLY ON, we see a different story. He'll be very frustrated in school. He'll keep falling behind. And this is before his vision declines. He perhaps will hate writing and reading because they were never made clear to him, and literacy is key to his success moving forward. Without services, we can see a future where he'll be dependent on welfare.</span></div>
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Dramatic? Extreme? Perhaps. We hope not to find out. We do know one thing, though. Early interventions make a huge difference. We've seen this in our kid.</div>
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Our child will be fine. He lives in privileged. He has parents who will go to whatever extreme needed to get him services he needs. But there are other kids like him, kids on the margins. Changes to their lives early on, getting the services they need at school, will make a huge difference. School budgets are tight. This small change will have huge ramifications. Let's not fail them!</div>
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-4061626659101936262017-04-26T06:28:00.001-04:002017-04-26T06:34:06.705-04:00Come see me liveThis blogger and storyteller will be performing at Listen to Your Mother! Come join me.<br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 14.6667px;">Celebrating Mother’s Day and benefiting Safe Shelter for Domestic Violence, the live storytelling stage show that gave local motherhood a microphone, </span><b style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 14.6667px;">Listen to Your Mother: Southwest Michigan,</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 14.6667px;"> returns to the St. Joseph High School stage for its Grand Finale on </span><b style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 14.6667px;">Sunday, May 7<sup>th</sup> at 4:00 PM</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 14.6667px;">. Early bird tickets ($15, general seating) on sale now at </span><a data-saferedirecturl="https://www.google.com/url?hl=en&q=https://ltymswmi17.eventbrite.com&source=gmail&ust=1493288745142000&usg=AFQjCNHMkEX83NuarKbSyxcdZG10JfgPLw" href="https://ltymswmi17.eventbrite.com/" style="background-color: white; color: #1155cc; font-family: arial, sans-serif; font-size: 14.6667px;" target="_blank">https://ltymswmi17.eventbrite.<wbr></wbr>com</a><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 14.6667px;">. Admission at the door $20. Brought to you by the dynamic production duo: Beth Haire-Lewis and Kim Jorgensen Gane.</span><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 14.6667px;"></span><br />
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-87150445334477062602017-01-26T22:33:00.000-05:002017-04-12T09:05:18.777-04:00Graduated!Since the last post Jonathan has continued to eat everything by mouth. He now can have PB&J sandwiches, crackers, cheese, mac & cheese, spaghetti, etc. He's graduated from feeding therapy, and while we're continuing to work with him daily to increase his ability to chew, he's doing great. He's even coming to us and REQUESTING food when he's hungry. Amazing.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com1tag:blogger.com,1999:blog-7773853689095331267.post-36981353778467837012016-11-21T18:44:00.001-05:002016-11-21T18:44:55.107-05:00I got no tube to hold me down.Tomorrow will mark week 6 of feeding therapy for Jonathan.<br />
Today he ate all his meals by mouth. It was our first day doing a home meal, and he did okay with it. Some gagging sometimes, yes, but smooth and in. No vomiting, no major behavioral issues, just sitting and eating (and playing) like a big kid.<br />
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He still will need his tube for overnight hydration (because of a kidney issue) but he doesn't need it during the day anymore. Let's hope this sticks!<br />
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Cheers,<br />
Jonathan's momLaura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-40119307868726567202016-11-15T20:23:00.000-05:002016-11-15T20:33:50.847-05:00The last 2+ weeks of intensive feeding therapySince my last post, JAM has taken a dry spoon (seriously, and no sweat! He just DID it) and then was slowly introduced to one food, then continued to increase volume of food until it was a full spoon, then added a second and third and now (just yesterday) fourth type of puree, one food at a time with the bite sizes slowly increasing and the amount of time allowed at each sitting also slowly increasing. Bite of food, reward of preferred toy, drink, reward of preferred toy, and repeat until the meal is done. All negative behaviors have been ignored, and it's worked. Negative behaviors are now all but non-existent. (He still lets us know that it's hard. He still shakes his head, says "no," and sometimes gags -- but the incidence of negative behaviors has dropped remarkably.)<br />
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This week I walked into the therapy room for the first time. Not for a meal, just to try to see if he'd let me brush his teeth the way he's learned to let (and trust) the therapists to brush his teeth. (WHICH, in and of itself is a huge accomplishment of the last few weeks: teeth brushing with wet brush, teeth brushing with toothpaste on the brush, teeth brushing while standing at a sink, and now today teeth brushing standing at a sink with toothpaste and MOM doing the brushing instead of the therapist.)<br />
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And he did.<br />
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Dentists, this kid would be your favorite patient. If you ask him to open, and put your finger right on his chin (no pressure needed) he opens REALLY WIDE and stays open as you count a slow "one two three" and brush his top right teeth, "one two three" for the bottom right, and on for the top left, bottom left, and front top, bottom top. Total of 18 slow counts. I don't think <i>I</i> would have the patience or ability to stay open that long without gagging. But don't tell my son that. A month ago we had to force-brush his teeth. He wouldn't open at all.<br />
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SO, that was huge.<br />
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And then today again, another big achievement: he ate an entire meal by mouth. All purees: a protein, a veggie, a fruit, and a high-calorie drink.<br />
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I was on the other side of the one-way-mirror doing a happy dance.<br />
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He was so excited he did a happy dance after therapy too, all over the family room, giving hugs to other kids, dancing in circles, and then (as we left to go home for the day) working himself into such a fit of happiness and excitement that he started breathing too hard. Then coughing. Then... well, "easy come, easy go."<br />
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Oh well. At least he got it all in by mouth. Next step will be to KEEP it all in.<br />
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Then after he gets used to tomorrow's new food (so in a day or two) I get to enter the room and be a part of his meals again. Slowly they'll transition me to being in charge of the food, and maybe by early next week we'll be able to eat plated meals at home. (Meals are plated, carefully weighed, measured, and analyzed to be sure that consistency of food is similar across the board. Purees must be absolutely correctly pureed. I failed the first three times I tried.)<br />
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So far this slow, controlled therapy is working, though. These folks know what they're doing. One month down. I'm excited to see what happens in these next three weeks.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-92004168787189578262016-10-27T13:32:00.000-04:002016-10-27T13:51:35.493-04:00Second full week of Feeding TherapyThe battle of the wills continued last week. At the meals he kept being asked to open his mouth. That was it. Just big quiet opens. He did that zero - that's right, no - times at one meal. Instead he double-downed on all the violent resistance he could muster. The timer beeped after ten minutes and then, after a very long minute or two, he finally opened, and then therapy was done. I believe this was last Thursday (so day 7).<br />
<br />
The second meal that day, he opened once within three seconds. A second time within fifteen. He fought a little after that, but did great. They instituted a new therapy tool to further motivate him. But more than that, it was that the fight had been fought and he saw he couldn't win. So he let go all attempts to control.<br />
<br />
By Monday (day 9) he was doing nice wide opens without much resistance and they were able to introduce a straw to the picture. He did great with that, so on Tuesday (day 10) they introduced actual liquid in the straw. He has to keep his mouth open while they insert a small amount of the milk/yogurt mix into his cheek. Then he closes and swallows when they say "close."<br />
<br />
The psychologist and I sat on the other side of the one way mirror on the meal where the first tastes were introduced. I watched him stare hard at the bottle, previously empty but now at this session with formula/yogurt in it. "Do you think he notices the liquid?" she asked. "OH YES," I responded. And then we watched while the therapists re-established his wide opens and his acceptance of the straw. Then she moved to putting a taste in his cheek. On the other side of the mirror, we waited for the melt-down to begin.<br />
<br />
He gave her a funny look. He swallowed. And then he went to play with the toy he gets as a reward for his work.<br />
<br />
The psychologist and I stared at each other in disbelief. "WOW!" we both said.<br />
<br />
He has had yogurt before. He's had this milk formula before. These are not new foods. But the therapist had total control, and that WAS new. And he was OK with it. And that was shocking to us.<br />
<br />
The last two days have involved slowly increasing the volume of that drink. Today at his largest "meal" he had 20 ccs. That's less than an ounce. But it was SOMETHING.<br />
<br />
He doesn't like getting the milk/yogurt in his mouth, but he accepts it. They're still practicing nice wide opens without food so that if he does regress, there's a firm foundation still established. Every other bite is a real bite, though, and he's doing GREAT. He takes the milk in his cheek, closes his mouth, swallows, and then says (sometimes more loudly than others) "NO NO NO NO." And then goes and plays with his toy. Resistance, yes. Displeasure, yes. But acceptance.<br />
<br />
One of his new friends at therapy school declared, as soon as she heard about his good meal, "OOH! He did good work! That means he gets to go see the fountains!" Fountains are J's favorite. Fountains, waterfalls, oceans... you get the idea.<br />
<br />
It was so super endearing that she remembered this that we decided we'd ALL go see the hospital's fountains as a reward for J's good work. So the little girl, her mom, me, and Jonathan all made a trek to the fountains a few blocks away. It felt nice to be able to reward him.<br />
<br />
Next week they will introduce the spoon. THAT will be where the real battle begins. But this week, and even (especially) last week's struggling, has paved the way for success when that step is introduced. Spoons, and the things held in spoons, are by far Jonathan's least preferred way of getting nutrition. But they are also what we will be doubling-down on in the future.<br />
<br />
We are encouraged.<br />
<br />
And, as an unexpected bonus, yesterday, for the first time in history, our child opened his mouth willingly for his nightly tooth brushing. He even said "ah!!" when he saw the toothbrush.<br />
<br />
It's been a good week.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com2tag:blogger.com,1999:blog-7773853689095331267.post-11835838350030839792016-10-18T19:37:00.002-04:002016-10-27T13:16:02.795-04:00Feeding Therapy Day 5Short of it: More resistance. We've settled on passive resistance. Lots of not doing what the therapist asks and just calmly waiting her out. She always wins. Usually after about three to five minutes of them both calmly waiting and her reminding him of what to do, he'll finally open his mouth.<br />
<br />
BUT it's still a battle of wills. And it's still taking a toll on him. So he, in turn, takes a toll on everyone and everything else. Before his first therapy session he hit a little girl whose only crime was that she was trying to be his friend. After his first therapy session he was in a very destructive mode, ruining another little girl's puff ball ghost (luckily she neither noticed nor cared -- and truth be told, the child life specialist had done most of the work on it) and throwing every piece of paper within his reach. He was in the middle of a tube feeding at this point, so when he'd destroyed everything else, he zeroed in on hitting the tube. Over and over and over again. ALL abilities to self-regulate and do what was right seemed to be gone.<br />
<br />
I removed him from the play area for a nice long quiet time in his room. We turned the lights low and focused on his favorite toys. That helped keep the destruction to a minimum. I kinda cried. By "kinda" I mean I sobbed.<br />
<br />
And then tonight I PRed on a 5k. I was not running a race. Just me running for myself. And it helped.<br />
<br />
I am not a seasoned runner and I always run slow. But I have to run a little this week, because I'm running a marathon this weekend. I'm glad I had to run because of how much it helped me relieve stress.<br />
<br />
J's journey has been and (through feeding therapy) will continue to be a metaphorical marathon. As we hit hard days, it's good to remember we're not alone in our struggles, and it's good to work to help benefit other people. Oh yeah, and it's good to run. Because it helps with stress.<br />
<br />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-19713509964804925682016-10-17T17:12:00.000-04:002016-10-18T19:37:49.139-04:00Feeding Therapy: Day 3 & 4Day 3 and 4 of feeding therapy were much the same, with day four being harder for us.<br />
<br />
Day 3, session 1:<br />
Review Day 2 lessons (allow therapist to touch face and chin for up to three seconds).<br />
Do REALLY good at that. WAHOO!<br />
Move on to: <br />
****************<br />
Learn that one should open one's mouth when given tactile & visual cue.<br />
Refuse to open one's mouth.<br />
Cry. Scream. Beg for help. ("help me!" and "momma!!" -- but of course I was no where to be seen, so he didn't really expect me to come. I was on the other side of the one-way glass mirror praying fervently. "just please let him open his mouth." and chanting in my head "please buddy, just do it, just do it, you can do it") He'd also tell the therapists to "be nighk" (be nice). And then thrash. If he hit or hurt them or himself in the process, so be it.<br />
Open one's mouth, begrudgingly.<br />
Get toy and praise.<br />
Repeat from *************<br />
<br />
Day 3, session 2:<br />
See Day 3, session 1. At one point the therapist said "Open your mouth" and J shouted back from clenched teeth "I'm TRYING!!!" Not quite good enough.<br />
<br />
Day 3, session 3:<br />
See Day 3, session 1, after the ***********. It was very clear that he both understood what needed to be done AND wasn't willing to do it.<br />
<br />
In between session one and session two he went to a nearby therapy gym and climbed and slid and swung and had a DELIGHTFUL time. He LOVED IT. And, bonus for the ASL part of our journey, when we went to get on his shoes afterwards, he said "goog" and signed "shoes." Communication WIN! The day before he'd "read" his first word in a book, it was the word "balls" -- he read it in braille, but that doesn't matter (he's learning both) the point was that he made the connection between print and meaning, so I was feeling like this week was a pretty big "win."<br />
<br />
In between session 2 and 3, he slept.<br />
<br />
-----------------------------------<br />
<br />
Day 4, session 1:<br />
See Day 3, session 1 (after the *******). Then after about two minutes of trying and failing, he gave a NICE easy WIDE open mouth. Got his toy. Then she asked him again, and after only about five seconds, he gave a nice wide open mouth again. Calm hands, no screaming. Just and absolutely compliant. Things were starting to move along. He was GETTING it. Then he decided to fight again. It didn't work, timer beeped, he opened his mouth one last time, session done.<br />
<br />
Day 4, session 2:<br />
Having failed at the flailing technique, and still not having any interest in opening his mouth on command, my ingenious son chose a new form of resistance. He sat. hands calm by his side, and refused to engage the therapists. He wouldn't look at them, wouldn't respond to their tactile or verbal requests. Wouldn't even lift his eyes. He looked half asleep. The therapists kept her finger on his chin (her tactile cue) and he just ignored. For, like, a long minute of passive resistance.<br />
That didn't work either. So he opened his mouth and got to play with the toy. Then he tried the passive/ignore technique again. The therapist waited him out and she won. Seeing that wasn't working, he alternated between the two techniques. At the end, after a long two minutes of refusing, the timer went off indicating the end of therapy. He wouldn't be allowed out of the chair until he did the task they asked of him, so after another long twenty seconds, he sighed, said "OPEN!" and opened his mouth wide for them.<br />
<br />
Day 4, session 3:<br />
I woke him up 15 minutes before his session so he'd be ready for his therapists. He wasn't having any. He was cranky. He didn't want his hearing aid, and barely wanted his glasses. The hearing aid became such a fight that we sent him off to therapy without it. But that fight set the stage for the therapy that followed. Every open mouth was a fight. Now, don't get me wrong, the THERAPIST didn't fight. She just sat there calmly, finger on his chin, reminding J every now and again that his job was to open his mouth. The fight was between J and himself. And it involved LOTS of thrashing and screaming and begging. His mouth only opened every two minutes or so. Most of the session was a battle of wills. Very little of it was playing with toys. Because that's what J chose for the day.<br />
<br />
In between session 1 & 2 we explored a new play area with one of my friends. Story time was a part of the process. J was only barely okay with story time. It was in a loud open room with echoing walls. When the SECOND story came on, a book on tape instead of a live person reading, he had had enough. He stormed out, found the quiet play room, and played with the calming noise machine. It only sort of calmed him, though, and as we left the play area, he was in tears. We never figured out why. (He started crying before we started leaving.)<br />
<br />
He slept really hard between session 2 & 3, but in the bits of in between time, for the full day, he was fit-to-be-tied. He threw trains, threw himself on the floor, or (in his better moments) isolated himself in a corner away from kids with one toy and played just with that toy, ignoring the rest of the world. He was a right mess. At the end of his last, and least successful therapy session to date, he ran up to the wall and hit it SO HARD with his hands that the therapist asked if the sound hadn't been made by his head. Nope. Just his hands. Because he was just that frustrated.<br />
<br />
--------------------------------------<br />
--------------------------------------<br />
<br />
I echo Jonathan's feelings. It is ridiculously hard to watch your child cry, head bang, clench and grind his teeth, scream, and beg for your help. When NO ONE is hurting him but he seems to think he is being tortured, and when you realize that that torture is coming from someplace deep inside himself, some visceral response to the complex medical life he's lived, it takes a part of a momma's soul and wrenches it practically in two. A thread holds the two bits of sinewy soul together, I have hope and I trust in the process. I know that these professionals KNOW what they are doing and EVERYTHING he's doing is a step toward independence and self-care. He can and WILL get this. You'll see.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIh-lmIBLHV7KyTv6AJZzJ6h14JZbLSS6fuLeOGX1v3C-KS_AM5hbPCQcVRqASMdRhLzNjuj75kb8y66QuoWmSv2pZewZdHcHP-3A7gNoV_0CWcRlaY-sblg8y0fgVsml6HeFDWZNAHqro/s1600/happyj.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIh-lmIBLHV7KyTv6AJZzJ6h14JZbLSS6fuLeOGX1v3C-KS_AM5hbPCQcVRqASMdRhLzNjuj75kb8y66QuoWmSv2pZewZdHcHP-3A7gNoV_0CWcRlaY-sblg8y0fgVsml6HeFDWZNAHqro/s1600/happyj.jpg" /></a>The therapists state that these fights are normal, that it is good that he's moving on to a different tool to fight with, it means he's working his way through all his tools and techniques for resistance and soon will realize that resistance is futile. Okay, those weren't quite their words. But the point is, it's normal, it's part of the process.<br />
<br />
But I still hate it.<br />
<br />
And so does he.<br />
<br />
I came home worn and in desperate need of hot fudge on top of frozen yogurt. It's an unseasonably warm day, so the day agreed with me too. But there is no chocolate in our house, so instead my loving partner took J to the playground to unwind and I wrote this therapeutic post.<br />
<br />
J came back moments ago, much happier. Here's the picture to prove it.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-54569132727619330772016-10-12T19:38:00.001-04:002016-10-12T19:38:26.944-04:00Feeding Therapy: Day 2Today was our first full day of feeding therapy boot camp.<br />
<br />
Jonathan arrived with plenty of time to play a little before his first therapy session. But instead of playing he mostly just STARTED to play and then threw mini-fits here and there. It took me about ten minuted before I realized that (DUH!) he was STARVING. I had one hangry kid on my hands.<br /><br /><b>The first feeding</b> session reflected all his hanger. The therapist worked with him one-on-one in a room while I sat with another therapist behind the one way mirror. Jonathan got very mad at the therapist any time the task was anything other than him feeding himself a graham cracker or her helping him with his water cup. If SHE TRIED to feed him ANYTHING, yogurt, cheese, or even his favorite food -- the graham cracker -- he'd melt down. If she OFFERED him any food other than graham crackers, he would ask for graham crackers. If they were withheld, he'd melt down. He flung his arms. He shouted "stop it," he begged to be let down. It was a short session, only ten minutes, but it was hard to watch.<br />
<br />
The rest of the day, however, was fabulous. After that initial assessment, they knew EXACTLY where they needed to start with Jonathan, so the next feeding session would mark the beginning of therapy. And for him therapy will start at the VERY beginning (more on that in three paragraphs).<br />
<br />
In between sessions the child life specialist took Jonathan aside to decide what the most incentivizing toys would be for him. There was a clear winner. The boat that had holes in it where balls could go down a ramp. I don't have any better name for it, but <a href="https://www.amazon.com/HAMMER-AWAY-by-Discovery-Toys/dp/B000IAGO1G">here (click)</a> is a picture of it. That boat will be the key to his future caloric intake.<br />
<br />
And, just so that we wouldn't ever be bored, between sessions I was also pulled aside by the dietitian. She went over all the new supplies we needed to buy (I'll be online shopping soon -- don't have time to go to the store for these things) and gave us an overwhelmingly large packet potential recipes for future meals.<br /><br />And then there was plenty of time for play. Jonathan hung out with hoola-hoops and friends, ran up and down the hallway, took a toy car for a drive, and snuck in a little "school time" (we practiced matching shapes and saying / pointing to the letters in his name). Then it was time for the next session.<br /><br /><b>The second feeding</b> consisted of no food. The therapist started at the VERY beginning. For Jonathan that meant that he allowed her to come near his face and trust both her and the process. First he got to play with that fantastic boat while sitting in the therapist's lap (because he refused his therapy chair -- it reminded him of the morning session). After a few minutes, he realized it wouldn't be all that bad, and he let her put him in his specially designated feeding chair. Then it was work time. Today that means the therapist touched his cheeks for one count. Then he played. Then she said "work time, then play time" and again touched his cheeks for one count. After a time, that moved up to three counts, then the under-the-lip hold for one count, and by the end of the session, he allowed her to hold under his lips for three counts while sitting calmly in the therapy chair. He was a fan of the play time, especially since she would also sing songs to him during these reward periods. He didn't mind this session at all, once he realized the boat would always come back to him.<br />
<br />
Then, after we gavaged his lunch, it was nap time. He napped well and hard. I had to wake him for his <b>third feeding</b> which was basically like the second, only the whole time they worked on the under-the-chin-three-count-hold, and he wasn't as tolerant. Their goal was to get him to <b>a</b>. not resist and <b>b</b>. keep his head up. He struggled with both. Sometimes he'd be a champ and super easy going, other times he was in the middle of a REALLY COOL idea with the boat, and he was REALLY REALLY upset that she was stopping him from playing, so he'd melt down and say he wanted to get down and go home. He learned that he couldn't win, that he had to sit for the count, and that if he complied, he got the reward sooner. He was also reminded him that he got to go as soon as the timer beeped.<br /><br />If any of you have had to potty train a stubborn toddler, you have some idea of the psychological game that was being played in that room. Only, gratefully, these are trained therapists. They're really good at keeping their cool and, ultimately, winning for the both of them.<br />
<br />
Once the blessed beep came, he ran back out to the waiting room, where I was sitting (having snuck out of the booth several seconds before) and asked him how he did. He told me he got to put balls down a ramp. He was very proud of himself.<br />
<br />
That was it for feeding therapy.<br />
<br />
He has a sedated procedure in the hospital tomorrow morning, so we went straight there from therapy so that he could be hooked up to IVs (something he has to do any time he goes off liquids, because of his genetic kidney disorder). So, no updates on feeding therapy tomorrow. Expect more Friday.<br /><br />He is starting to get the grove. He truly LIKES the other kids in the program, and didn't even hit any of them out of excitement today. Instead he just ran around with them and laughed animatedly. Definitely a "win" for all.<br /><br />
<br />
<br />
<br />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-81124531492503574812016-10-11T17:31:00.002-04:002016-10-11T17:31:40.878-04:00Feeding Therapy: Day 1Jonathan started intensive feeding therapy today. It's best described as a feeding boot camp. All day, every week day, for about two months, Jonathan will learn to overcome his fears and challenge his body to perform feats he never knew he could.<br />
<br />
Today was: Exciting and exhausting. It was only a half day, but I'm ready to sleep (and it's only five and the laundry isn't done yet.)<br /><br />First Jonathan played with trains and I filled out paperwork and discussed procedure with the social worker.<br />
<br />
Then Jonathan and I unpacked things into his room, a small and well-insulated room with a pack-and-play, two chairs, a side table, and a cupboard with a lock. Jonathan discovered that the light switch was a dimmer. As I tried to unpack the items we'd brought from home, he worked REALLY hard to keep the bedroom ALWAYS dark. Did you know that the time it takes to get from the lightswitch to the cupboard in that ridiculously small room is ALSO the amount of time it takes for Jonathan to move the dimmer switch from the "full on" to "pitch black" setting?<br /><br />When we were (finally) done with THAT <i>delightful</i> game, Jonathan drove cars up and down the wall and we got acquainted with other families that are a part of the program. There are about four or five other kids enrolled right now, so it's a small program. But intense.<br />
<br />
At the prescribed time we were escorted to a room where they carefully weighed everything I was thinking of giving to Jonathan. I fed Jonathan in a "normal way" while people stared at us through a one-way mirror. Jonathan did not know I was there.<br /><br />Jonathan was a champion. He ate two or three ounces of graham crackers, downed four to six ounces of water, and even had a few bites of apples. He didn't refuse anything and kept eating for about fifteen minutes or so. We chatted about this and that. It was a delightful, and perfectly normal, toddler experience. At the end they weighed the food that was left, did a little math, and charted his consumption. OUNCES, entire OUNCES were consumed.<br />
<br />
----------------------<br />
The experts behind the one way mirror asked if this was typical. I confessed it wasn't. I confessed that he only this week decided bites of apples were okay, and the novelty hadn't worn off so he was still willing to take those small tentative bites. And the graham crackers? They're his manna from heaven. And if, like manna, he could live off of it and only it, he would.<br />
---------------------<br />
<br />
He went down for a nap in a pack-and-play in a side room that would be "ours" for the next two months. I put a dinosaur sheet over the top and told him it was a tent. I hoped that he'd decide this was "cool" and NOT "baby," because they'd run out of beds and this is all we had. He actually slept. We'd only been there a few hours, but it was a LOT to take in.<br />
<br />
I spent a half hour reading over entrance paperwork and then went into a forty-five minute conference to discuss how things had changed with him since they saw him last April.<br />
<br />
When Jonathan got up, it was time to eat again. This time cheese (an old favorite, but not a NOW favorite), fishy crackers, and kidney beans (again, something he USED TO eat) were on the table.<br /><br />
He ate three bites of fishy crackers. As I offered the other food, he neatly put the beans and cheese into a container that I think he decided was his "no thank you" spot. This is A HUGE WIN as he would have, in years past, tossed it and thrown the HUGEST fit about me even THINKING about giving it to him. So "yea" for us there.<br />
<br />
He then downed two ounces of water, got mad at the water cup for being empty, and tossed the cup and threw that fit. It was short lived, only about fifteen seconds, but it marked the end of our second feeding experiment. I tried to feed him any of the options one more time, but he wasn't having any.<br />
<br />
"So was that more like a typical meal?" asked the woman behind the mirror.<br />
"Yes" I responded.<br />
<br />
And she didn't even weigh out the food to see how much he'd eaten.<br /><br />THEN it was time to sit in the family room again and gavage (feed by g-tube) the rest of his meal.<br />
<br />
By this point Jonathan was REALLY REALLY excited about his new school. He had the hugest grin on his face and his eyes kept flashing at everything. But mostly at the two kids, about his age and size, that were playing with the car ramp that HE, just hours before, had ALSO been playing with. <br /><br />"I want OUT!" he implored.<br />
<br />
And I told him he need to get the rest of his meal. I guess I'm mean like that.<br /><br />He thought it would go faster if he would repeatedly hit the feeding tube, faster and faster, with his hands. He made a REALLY big show of it, so the other kids would notice. He did it even more when I told him to stop, when I reminded him that all that splashing in the tube would not ONLY make it go slower, it would also make a mess. He timed his shots perfectly so, just as I took my hand off the top of the tube to add more milk, SLAM, the tube would be hit and any remaining milk in the bottom of it would GRACEFULLY arch its way over our heads to the floor. "A RAINBOW!" he declared, with a wide grin.<br />
<br />
He was having the time of his life. All restraint had been abandoned to the excitement of the moment. So when I let him down to play nicely while I packed up the rest of our things for the day? He very quickly found his way to the two kids, and decided that ROUGH HOUSING was WAAAAY more fun than "playing nicely." He wanted to make himself KNOWN.<br />
<br />
So he earned a time-out, and I was yet again grateful that he had his own room.<br />
<br />
We got home, I wrote this, and then I promptly went to bed... in my dreams. Really, I started packing for the next day (we have an overnight hospital stay tomorrow night, not feeding related, but it'll start once feeding is done) and doing laundry and dishes. Oh, and maybe saying "hi" to the other members of our family.<br /><br />We're tired. And the actual THERAPY hasn't even started yet.<br />
<br />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com1tag:blogger.com,1999:blog-7773853689095331267.post-7393931407350959002016-09-05T15:44:00.001-04:002016-09-05T15:45:34.937-04:00Latest articleFor those following me only through this blog, here is a link to my latest article, about taking time to enjoy our special needs kids.<br />
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<a href="http://www.preemiebabies101.com/2016/09/delight-despite-delays/">http://www.preemiebabies101.com/2016/09/delight-despite-delays/</a><br />
<br />
ENJOY.<br />
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-57190965339030665252016-03-23T16:17:00.002-04:002016-05-09T18:56:14.772-04:00#whyisignThere's a <a href="http://www.whyisign.com/">movement out there</a> encouraging people to share why they sign (use American Sign Language). Here's my contribution to that story, and a little update on our little guy.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIHeCiOxDlPnXi_PbpfIvr7fvkmSlh-DZB7WvH_VCnn4xwwVBVfvtACZzVfIPtE4o4XcRwc-V95uZ46_93fC-OVOky8DxRxKVS2H_iKT-7B5TOr7CITxbQNyJthI9XttM5kXireBUxQomK/s1600/car.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="190" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIHeCiOxDlPnXi_PbpfIvr7fvkmSlh-DZB7WvH_VCnn4xwwVBVfvtACZzVfIPtE4o4XcRwc-V95uZ46_93fC-OVOky8DxRxKVS2H_iKT-7B5TOr7CITxbQNyJthI9XttM5kXireBUxQomK/s320/car.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo of child in retro toy car, watching a girl sign on TV</td></tr>
</tbody></table>
<div style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
We didn't cry when we heard about hearing loss in our preschooler (last summer). We rejoiced. We didn't know where it was coming from, but we finally knew how to help him. We could learn another language for him. We could help him understand. We would become bilingual.</div>
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Then we hit road blocks. We were told it was only mild loss. That it was unilateral. That we didn't need to sign, because he'd hear enough through his good ear, and once he had an aid, he'd know where to look. This sounded like good news, but didn't match up with our day-to-day experience. We were told that he wasn't deaf-enough for a d/hh (deaf and hard of hearing) preschool. Don't learn sign, said the ENT (ear doctor). Whatever you want to do, shrugged the audiologist.</div>
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We heard what they were saying, but then we watched our toddler son. He sat in my arms and pulled our faces close to his when he'd tell us an important story. He'd stare at our lips. He'd misunderstand our words, but he wanted SO MUCH to understand and be understood. And we didn't want to lose any more time.</div>
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So, shakily, with embarrassing mistakes and unsteady hands, we started to sign. It wasn't all right, it wasn't all good. The words came out of my hand in faltering, jerking, unnatural movements. Sometimes unnaturally loud, sometimes lacking all emotion. A lot of times we signed was with our voices going, and so it really REALLY wasn't ASL, it was signed English.</div>
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But it was something, and he was responding. He was picking up language, he was asking better questions. Once his sisters started using their hands, too, he started to sign back. We began turning off our voices at family gatherings. Even though he could hear, we were going to become bilingual.</div>
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Unnecessary? Maybe. If his level of loss stayed the same, he'd probably prefer English and never attend a Deaf school. <u>But I needed to learn to change MY outlook.</u> Change "might become deaf" to "might become Deaf," and suddenly it's not bad news. Deaf (capital D) indicates a culture, a community, a world of other people with a rich history and language. Make Deaf acceptable. Make Deaf FINE.</div>
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Just recently, just six months after the first test, he was tested again. The mild loss now looks to be moderate. It's now in both ears. The cause, while still unknown, is suspected to be genetic. And while so much is uncertain, it might continue to get worse.</div>
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For the first time I heard an ENT say "learn sign," but then he said "but you don't need to learn ASL. Just learn baby sign, so that he can express himself better."</div>
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The ENT didn't know that ship had sailed. Why would we give him a town when we could give him the world? We'd already started our journey, our course was set. If our son was going to come half way, pull our heads toward his and read our lips, we could close the gap. In fact, we could go beyond the gap, and we could make this wonderful.</div>
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Our son may be moving from hard of hearing to clinically deaf. Maybe not. But either way, we aren't worried, because through the Deaf Community that has gone before, we have been taught the difference between the poor deaf boy and the proud Deaf child. And we intend to pass that along to our son.</div>
<div style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-top: 6px;">
We sign because we love him, because we want him to feel connected to the world around him, no matter what the future holds. This is my #whyisign.</div>
Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com1tag:blogger.com,1999:blog-7773853689095331267.post-66459322769585722322016-02-29T18:03:00.000-05:002016-02-29T18:53:18.475-05:00Rare Disease Day: Thanks Docs! From a Mom Parenting a ZebraThere's an old bit of advice given to doctors. If it has four legs and a mane, and you're not in Africa, it's probably a horse, not a zebra.<br />
<br />
In other words, when diagnosing a patient, don't look for the rare diseases first, look for what is most common. And that makes sense.<br />
<br />
<b>But what happens when your child IS a zebra?</b><br />
<b><br /></b>
Today is Rare Disease Day, so in solidarity with other parents of rare disease kids, I offer up this ridiculously cute picture that sums up our world.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc_KymI65TbR3LwM5G-gPcYJQdDOIVS2GEuwfwcfdi1w9B0GAnLtzeNzi404Kk06ZcZvSwZ1QwU7_K2F-iMyaFBbFxBcVH2g87tCsY7EJTXsjw6IhO2sH2XheXA1g2Ry0ERLQDZhe41tpV/s1600/studyingraredisease.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc_KymI65TbR3LwM5G-gPcYJQdDOIVS2GEuwfwcfdi1w9B0GAnLtzeNzi404Kk06ZcZvSwZ1QwU7_K2F-iMyaFBbFxBcVH2g87tCsY7EJTXsjw6IhO2sH2XheXA1g2Ry0ERLQDZhe41tpV/s320/studyingraredisease.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo of boy reading newspaper</td></tr>
</tbody></table>
<br />
<br />
<b>Being the parent of a zebra means</b><br />
a. lots of lab draws and appointments with specialist (in this photo he waits for yet another blood draw to test kidney levels)<br />
and<br />
b. (if you're a parent like me) lots and lots of research and reading whether it's<br />
-- reaching out to the fifty other parents nation wide whose kid is like yours<br />
or<br />
--reading (and trying to comprehend) journal articles and college textbooks to learn the anatomy and medical language necessary to understand the lots of lab draws and appointments with specialists (see "a").<br />
<br />
<br />
But don't feel sorry for us. The rewards are greater than the costs. I think that is ALSO summed up in the ridiculously cute picture above.<br />
<br />
Happy Rare Disease Day. Thank you to all the doctors out there who are studying these rare cases. You're helping us find ways to make life as great as possible for kids like mine.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-11445203370769079622016-02-21T12:53:00.000-05:002016-02-21T13:06:47.324-05:00Don't be sorry _____ , because I'm not.Did I tell you my son has hearing loss? Oh, right, I haven't been putting a ton of his medical stuff up here over the past year (mostly because lots of it is up in the air and has nothing to do with prematurity).<br />
<br />
<a href="https://uncommonsense567.wordpress.com/2016/02/21/dont-be-sorry-im-blind-im-not/">THIS post </a>(click on link) has nothing to do with hearing loss, either, but it could. I could easily re-write this article to say "Don't be sorry my son is hard of hearing, because I'm not."<br />
<br />
So for those of you who have kids with special needs -- be it blindness, deafness, need for AFOs, etc, how do you approach those needs or the people around you who make comments? How do you respond to the "I'm so sorry"s that you hear?Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-379313351156996302016-02-13T19:26:00.004-05:002016-02-13T19:26:53.543-05:00Out of the bubble - we caught RSV. But it isn't as bad when you're three.My son got sick. He was so cranky that we went in after just a day or so of illness and found that he had an ear infection. After three days of antibiotics and several renal panels because he was acting just that weird, we went in for another check up at the doctor's office. She was concerned about his oxygen saturation and sent him in for overnight motoring at the hospital. I thought it'd be a quick stay.<br />
<br />
That night he was put on oxygen. For two nights and the better part of his second day there he needed oxygen. On the third night he finally saturated normally so we were able to go home.<br />
<br />
I knew we'd have to leave the bubble of isolation eventually, and I knew that with a micropreemie that came with risks. The first year of preschool is hard for any kid. My older kids were sick every other week at preschool. By comparison Jonathan's been doing pretty good. He had croup, a cold, and now RSV/an ear infection this school year, but that isn't too bad.<br />
<br />
But this reminded me of a few important lessons for you micropreemie parents:<br />
1. RSV is no small thing! If it can kick a three and a half year old former micropreemie hard enough to hospitalize them for four days, then your younger preemie could be hospitalized even longer.<br />
2. Lungs are still developing in infants and toddlers. Keeping their lungs safe from illness and infection now is helping develop lung strength for the future.<br />
3. Isolation IS hard, but there's an end to it. It's worth the investment.<br />
<br />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-16081099834679181572015-10-31T12:41:00.000-04:002015-10-31T12:41:19.667-04:00Teal Pumpkin ProjectI am a fan of the <a href="http://www.foodallergy.org/teal-pumpkin-project?#.VjTu6vmrS5g">Teal Pumpkin Project</a>, a way of helping North Americans branch out beyond the typical sugary treats for Halloween and offer small toys (rings, stickers, etc.) instead. It was established as a way to raise awareness about food allergies.<br />
<br />
I have a relative with Celiac Disease. My husband rushed his best friend to the ER after accidentally introducing him to a tasty dessert made with tree nuts a few years back. I get how serious food allergies are. So I celebrate the Teal Pumpkin Project for what it is, but I must point something out.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.foodallergy.org/image/FARE_TPP_RGB.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://www.foodallergy.org/image/FARE_TPP_RGB.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">For more information, visit http://www.foodallergy.org/home</td></tr>
</tbody></table>
<b><span style="background-color: #45818e; color: cyan;">THE TEAL PUMPKIN PROJECT IS FOR MORE THAN JUST FOOD ALLERGIES.</span></b><br />
<b><br /></b>
My son doesn't eat much by mouth. He's now old enough to care about trick or treating. We could keep him inside (and when I see the sniffling kids at overly crowded Halloween events, I'm tempted) but we instead drag him around to all the houses where he gets suckers and candy bars and gum balls... things he won't be able to eat for several years. The candy goes to his sisters and he gets, well, nothing.<br />
<br />
<b><span style="background-color: #45818e; color: cyan;">THE TEAL PUMPKIN PROJECT HELPS "TUBIES."</span></b><br />
<b><br /></b>
"Tubies" is a nickname for people with feeding tubes. Cute (or ridiculous?) nickname aside, I know I'm not the only parent out there that will be<a href="http://www.foodallergy.org/teal-pumpkin-project/map"> looking at the Teal Pumpkin map</a> to see if there are any homes that will have something besides food for my feeding tube child.<br />
<br />
I'm not related to any child with diabetes mellitus, but I'm sure the same goes for these kids.<br />
<br />
<span style="background-color: #45818e; color: cyan;"><b>THE TEAL PUMPKIN PROJECT HELPS CHILDREN WITH DIABETES MELLITUS</b>.</span><br />
<br />
THANK YOU, Teal Pumpkin folks, for making the world a more welcoming place.<br />
<br />
Who else benefits from this movement? Leave your comments/thoughts below.Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-28775525884515854662015-08-13T18:43:00.002-04:002015-08-13T18:43:20.351-04:00A 23 weeker success story.On a board somewhere a mom asked for 23 weeker success stories. For a bit I questioned what constituted "success" since there's no doubt that prematurity will impact my son in small ways for a long time, but then again, if three years ago I could have seen what I see now, I would have cried tears of joy. My son IS a success.<br /><br />He is still medically complex. We've been chasing down genetic reasons for our son's kidney conditions. We've added a few more symptoms, treated those symptoms, ended up with electrolyte imbalances that have landed us in the ER and hospital (and first ambulance ride) and adjusted medicines again.<br />
<br />
We're still working out what's going on, so I'll keep this brief, but it's such a relief (and so odd) that the thing that makes him medically complex is not a result of his severe prematurity.<br />
<br />
<i>To go down the list from head to toe:</i><br />
<b><a href="http://momofa23weeker.blogspot.com/2014/06/lifelong-disability-pvl.html">PVL</a></b> - that "life long disability" we talked about before -- mild, and last head scan showed ventricle size to be high end of normal instead of mildly enlarged. Doesn't seem to be holding him back much at all. We've now graduated from neurology and neurosurgery. They don't need to see us any more. Ever.<br />
<b>Retinopathy of prematurity</b> - We've got a kid that's quite nearsighted, and becoming more nearsighted with every growth spurt. But his eyes still correct to 20/20 with glasses, so this isn't holding him back. He's at risk for eye issues down the road, but this just means we need to keep up with his eye appointments.<br /><b>Chronic lung disease</b> - a puff on an inhaler twice a day and occasional administration of albuterol and he's good to go. We see pulminology about once or twice a year tops.<br /><b>Kidneys</b> - this is the biggy. The list of things wrong with these organs is long, but all seems to stem from one genetic condition. Nephrocalcinosis, mild (and quickly disappearing) hydronephrosis, distal tubular acidosis, polyuria / polydypsia, and associated physical delays from a body that hasn't managed electrolyte imbalances well for three years... yep. This is the one we're still trying to figure out how to control. It's impacted eating (as he gets nauseated now from potassium and sodium levels being off -- and when he was younger it impacted his nursing as he was chronically tachypnic) and that impacts speech. There's a chance hearing has been compromised as well. We'll check that out next week. He's failure to thrive still and needs a g-tube to administer some (but not all) of his food.<br /><br />And that's it. He walks, he runs, he talks, he has a fantastic sense of humor, and his small stature and glasses just gives him more "OOOOOH!!! He is SOOOO adorable! That kid is so cute!" everywhere we go. It's almost an involuntary response on the college campuses we frequent.<br />
<br />
Yes, success. Yes, the long road was worth it. There was a light at the end of the tunnel.<br />
<br />
<br />
<br />Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-48979068415210575352015-05-12T21:51:00.002-04:002015-05-12T21:53:53.588-04:00You are enough.<div class="MsoNormal">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: 'Josefin Sans', serif; font-size: 15pt; line-height: 107%;">A year ago I wrote these words on the comments section of a blog written by a mom who has gone before me with her own premature son. She re-posted them in <a href="http://www.lifewithjack.com/2014/04/why-i-continue-to-tell-jacks-story.html">this post</a> and I re-found them while surfing the web this evening. I found it to be such a treasure that I thought I'd share.<br /><br />Folks, we are all <i>enough</i>. Whatever or wherever you are, it is, simply, enough.</span></div>
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<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: 'Josefin Sans', serif; font-size: 15pt; line-height: 107%;">---------------------------</span></div>
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<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: 'Josefin Sans', serif; font-size: 15pt; line-height: 107%;"><br /><i>I worked
with non-verbal, non-ambulatory adults before having my second trimester baby.
They kindly taught me that I was an intellectual snob. If you'd asked me,
"Do you think all people have value?" I would have said yes. But
secretly, in that part of me I wasn't even aware existed, my actions showed
that I believe people had to be smart enough, bright enough, fast enough, good
enough. They had to have something that they were best at, and I was constantly
measuring myself to see if I was "enough" of anything.</i></span><span style="color: #222222; font-family: "Josefin Sans",serif; font-size: 15.0pt; line-height: 107%;"><br />
<br />
<em><span style="background: white;">My adult
special needs clients quickly became friends. And they weren't fast enough,
smart enough, etc. enough at anything. But yet they were enough.</span></em><br />
<br />
<em><span style="background: white;">Now when
people in my very brainy world (full of philosophers and academics) talk about
what it is to be human, I think of these friends. If their definition does not
include my friends, it is a false definition, because in so many ways these
friends taught me how to be human better than my lofty education ever could.</span></em><br />
<br />
<em><span style="background: white;">I know that
sounds ideal and romanticized, but the lessons I learned from them were ones
that no textbook could have taught me.</span></em><br />
<br />
<em><span style="background: white;">The lessons
I learned from them were the ones that allowed us to, without hesitating, say
"yes, resuscitate our son, because if he can live - even if it's as a non-verbal
and non-ambulatory person, if he can even have a chance at life, it is worth
it."</span></em><br />
<br />
<em><span style="background: white;">And it has
been so worth it.</span></em></span><o:p></o:p></div>
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-80590775135938010992015-05-01T15:25:00.006-04:002015-05-01T20:31:39.278-04:00Nominate your NICU hero<div class="MsoNormal" style="background: white; color: #222222; font-family: Calibri, sans-serif; font-size: 11pt; line-height: 14.25pt; margin: 0in 0in 0.0001pt;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6qet1JAOYJcSpJaWnzUQFSo0WZjHjBl1P4-_F2nuj5zYefURIKyWi-34CojhdLcatAfqQ2OmFAweTCmLuNjN2EdiKjrz7zrdqXNiduZpFNNwRVtA8nhji1ENJoorwJENo5a03afgyCUF/s1600/HandtoHold+Hero.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6qet1JAOYJcSpJaWnzUQFSo0WZjHjBl1P4-_F2nuj5zYefURIKyWi-34CojhdLcatAfqQ2OmFAweTCmLuNjN2EdiKjrz7zrdqXNiduZpFNNwRVtA8nhji1ENJoorwJENo5a03afgyCUF/s1600/HandtoHold+Hero.jpg" /></a></div>
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<span style="font-size: 12pt;">Do you know a NICU Hero? Did you ever get a chance to thank that special person?<u></u><u></u></span></div>
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<span style="font-size: 12pt;"><a href="http://www.handtohold.org/" style="color: #1155cc;" target="_blank" title="Hand to Hold"><span style="color: windowtext;">Hand to Hold</span></a></span><span style="font-size: 12pt;"> and </span><span style="font-size: 12pt;"><a href="http://www.mjn.com/" style="color: #1155cc;" target="_blank" title="Mead Johnson Nutrition"><span style="color: windowtext;">Mead Johnson Nutrition</span></a></span><span style="font-size: 12pt;"> are accepting nominations from April 1 to <span class="aBn" data-term="goog_1719919269" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">May 14, 2015</span></span>, to the Third Annual NICU Heroes Awards. They are </span><span style="font-size: 12pt;">inviting parents and caregivers to nominate NICU health care professionals whose compassionate care and dedication helped lessen the emotional toll of a NICU stay and ensured the best outcome for their baby and family. </span><span style="font-size: 12pt;"><u></u><u></u></span></div>
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<span style="font-size: 12pt;">There really are so many NICU and bereaved families receive care from neonatal staff who goes above and beyond what is required.<u></u><u></u></span></div>
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<span style="font-size: 12pt;">Nominating is easy. Fill out a short form with contact information, your story, hospital name and the name and email of the NICU professional you'd like to nominate. That’s it! <u></u><u></u></span></div>
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<b><span style="font-size: 12pt;">Nominations will be from April 1 to <span class="aBn" data-term="goog_1719919270" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">May 14, 2015 at 5pm CT</span></span>.</span></b><span style="font-size: 12pt;"> All nominees will receive a Certificate of Nomination in recognition of their achievement and a copy of the story you share about the difference they made for your child/ren and family. It's a wonderful way to share your appreciation for their efforts when words hardly seem enough.<u></u><u></u></span></div>
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<span style="font-size: 12pt;">A panel of judges, composed of NICU parents and active NICU professionals, will judge the awards and decide on two winners. The two NICU Heroes Award Winners will receive the following:<u></u><u></u></span></div>
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<u></u><span style="font-family: Symbol; font-size: 10pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><u></u><span style="font-size: 12pt;">A a NICU Hero Award certificate and trophy, presented at the winner’s hospital,<u></u><u></u></span></div>
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<u></u><span style="font-family: Symbol; font-size: 10pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><u></u><span style="font-size: 12pt;">A $2,500 donation made in their honor to the pediatric healthcare charity of their choice*, and<u></u><u></u></span></div>
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<u></u><span style="font-family: Symbol; font-size: 10pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><u></u><span style="font-size: 12pt;">A one-year subscription to the Hand to Hold </span><span style="font-size: 12pt;"><a href="http://handtohold.org/nicu-resource-library/" style="color: #1155cc;" target="_blank" title="NICU Resource Library"><span style="color: windowtext;">NICU Resource Library</span></a></span><span style="font-size: 12pt;"> for the winner’s hospital to help educate families new to the NICU<u></u><u></u></span></div>
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<span style="font-size: 12pt;">*Some limitations apply<u></u><u></u></span></div>
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-29367644480897105412015-04-03T14:41:00.000-04:002015-04-03T15:23:59.742-04:00"I know, it's the glasses"The gradual end of isolation brings with it comments from strangers. Today marked our first timid outing of the year, to attend the Good Friday service. We stuck to the sides and backs of the church and applied hand sanitizer so liberally that one of the ladies watching us smiled the third time we reached for it. Since we are new to the community, people don't know us well. Since Jonathan's been in isolation, people have never really seen him before. He's got a face that's hard to forget.<br />
<br />
Mostly we heard, <b>"Oh MY goodness!! He IS SO CUTE."</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigvvOVF9x9gBkfYzTKL0ibkk12-X9jc-7bpzVUNvLHRqiDZAJ7W0GNI4bZXpMmqoSDP-VHLWrPFKGGtCFs5xWSxK5TgIOJGJzeUBMVma-pH_Nmw-2E-T2dMPp8_c4EklbhbfsXysSztXdZ/s1600/glasses.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigvvOVF9x9gBkfYzTKL0ibkk12-X9jc-7bpzVUNvLHRqiDZAJ7W0GNI4bZXpMmqoSDP-VHLWrPFKGGtCFs5xWSxK5TgIOJGJzeUBMVma-pH_Nmw-2E-T2dMPp8_c4EklbhbfsXysSztXdZ/s1600/glasses.jpg" height="284" width="320" /></a></div>
And we responded, "I know, it's the glasses."<br />
<br />
But also other comments.<br />
<b>"How old is he?"</b> (gulp)<br />
"Two-and-a-half-but-he's-really-small-for-his-age."<br />
<br />
This time followed by, <b>"It's obvious he's REALLY smart." </b><br />
<br />
To which I of course reply, "Thank you,"<br />
<br />
But inside a little knot tangles and untangles as I think:<br />
"Maybe? I'm glad you think so, but I'm not sure I dare to hope... you don't know it, but he's in special education because of his significant delays. That doesn't usually equate itself to 'really smart.' He may forever be in special education. But I love the way he sees the world, and watching him watch us encourages me and gives me joy. In the end, does it matter? Do labels matter, and even if they do, does THAT label matter? I try so hard to believe labels are nothing compared to the kid. Smart or not, he's still himself, and that's worth so much."<br />
<br />
In the end, perhaps the best response is, simply,<br />
<blockquote class="tr_bq">
<b>"I know. It's the glasses." </b></blockquote>
Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com1tag:blogger.com,1999:blog-7773853689095331267.post-28411037707843320282015-03-02T14:52:00.003-05:002015-03-04T08:36:26.080-05:00More gratitude - The sun has come out again<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD0vh2FVSeVASkWWqYbKpFDaP79YkN2zQ5_HBxpiE4X1IHD9mmnUnFnuVl72oKvH-I3Lt4WKBYVMD5eV24OEqO3HmyLhOzQz1wCLKgsws0CjUvISoLKJamOECG_P8ZekUs5EoY-n3DL9PS/s1600/IMG_20150302_103323.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD0vh2FVSeVASkWWqYbKpFDaP79YkN2zQ5_HBxpiE4X1IHD9mmnUnFnuVl72oKvH-I3Lt4WKBYVMD5eV24OEqO3HmyLhOzQz1wCLKgsws0CjUvISoLKJamOECG_P8ZekUs5EoY-n3DL9PS/s1600/IMG_20150302_103323.jpg" height="320" width="281" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Checking out the toys</td></tr>
</tbody></table>
<div>
Y'all know that J is small and developmentally delayed. And y'all know that some of that is from his prematurity, and some is from the long undiagnosed renal tubular acidosis.<br />
<br />
Saying he's "developmentally delayed" is harder than admitting he's small. I want to strike it out with all the "BUT"s of his life. "BUT he's trying so hard, BUT he's almost up to 50 words. BUT you wouldn't know it looking at him. BUT he's not THAT behind, BUT it's from the lethargy of undiagnosed RTA." But no BUT will remove the delays from his chart, not yet.<br />
<br />
We had an appointment with the developmental pediatrician today to check up on these issues and get an overall sense of progress.<br />
<br />
Winter gray lifted and the sun showed through scattered white clouds the full there and home again. I knew the sun would <a href="http://momofa23weeker.blogspot.com/2015/02/lets-be-honest-this-weather-has-got-to.html">come back again</a>, eventually.<br />
<div>
</div>
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<div>
<br />
<div>
As he played in the waiting room, another girl, just his height, came and joined us. He viewed her with cautious curiosity, and she saw him as an instant friend. They played side-by-side for a while, and then she jumped up on a table that was just above waist height for her. He regarded this with some surprise.</div>
<div>
<br /></div>
<div>
"Learning bad habits, are you, buddy?" I said to J.</div>
<div>
"Oh, get down from there! You're teaching him bad habits!" the other mom echoed to her daughter.</div>
<div>
"It's okay," I said, "He doesn't have the strength to do that. And, honestly, if he did, I'd be thrilled."</div>
<div>
<br /></div>
<div>
Because the two looked like twins in height and build, the next question was inevitable.</div>
<div>
<br /></div>
<div>
"How old is he?"</div>
<div>
"Oh, certainly older than she is." I said, "He's a tiny guy."</div>
<div>
<br /></div>
<div>
She nodded at my redirection and turned to her daughter. But, looking at them side by side, exactly the same height and playing so similarly, curiosity got the best of me, too.</div>
<div>
<br /></div>
<div>
"So, how old<i> is</i> she?" I asked.</div>
<div>
"Almost two," her mom beamed.</div>
<div>
"Ah!" I said, and then, because it would be rude not to share, "He'll be three in July."</div>
<div>
"Wow, he IS itty-bitty!" she replied.</div>
<div>
<br /></div>
<div>
But do you know what? The comment didn't sting. Through that entire interaction, watching him with an almost-two-year-old who was clearly stronger than him but not THAT different, I couldn't help but smile with gratitude. "She's an almost-two-year-old." I thought, "That means he <i>looks</i> like an almost-two-year-old and he<i> acts</i> like an almost-two-year-old. He might look like a two year old before he turns three!" I thought, "And he's getting so strong,"</div>
<div>
<br /></div>
<div>
Our conversation stopped there as the nurse called us in. Jonathan heard her call and walked HIMSELF out of the waiting room (a first), head held high with the confidence of a toddler who knows where he was going. I followed him, still smiling, thinking of the little girl.</div>
<div>
<br /></div>
<div>
In the doctor's office, he paraded himself around the room with glee. I marveled that his rib cage was no longer <a href="http://momofa23weeker.blogspot.com/2014_05_01_archive.html">visible</a>. Four months ago I had to keep him strapped in the stroller to keep his hands off the dirty floor. This time around he never once tried to crawl. He was terribly helpful with his physical, showing the developmental pediatrician how to use the alligator hammer to check his reflexes, and reminding her that a fun looking twirly wire connected the fundoscope to the wall. What a difference from the lethargic stares of last spring. So grateful.</div>
<div>
<br /></div>
<div>
He weighs nearly 9.5 kilos (20.75 lbs) and is 31.25 inches. He's still off (below) all the charts for height and weight by age, and he's sitting right around the 5% weight-for-height ratio, but that's really good compared to a year ago, on all accounts. Our weight goal is 10 kg by April -- a goal that seemed impossible when we set it last fall, but he is getting there. Ah, gratitude.</div>
<div>
<br /></div>
<div>
The developmental pediatrician commented on his muscle tone. "I have written here from our last visit 'low muscle tone in ankle,'" she said, "but he's not any more." She gushed. I'm overjoyed.</div>
<div>
<br /></div>
<div>
The endocrinologist doesn't think J has any hormone related ailments. The GI doctor thinks he looks great and confirmed that <a href="http://momofa23weeker.blogspot.com/2013/11/pam-fod-13-preemie-complications-nec.html">NEC</a> was likely the cause of his zinc deficiency, which is an answer to that question. Both specialists have one more follow up appointment (one four months out, one a year out), but in both cases, I think that just may be the last we see of their offices.</div>
<div>
<br /></div>
<div>
We've seen huge gains with the in-home physical and occupational therapists over the last two months (it's hard to believe it's only been that long) and so at today's appointment we arranged for him to switch to inpatient therapy after he's out of isolation. I was reminded that April was just around the corner.</div>
<div>
<br /></div>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJqB9nF2NC_uMKr6Ihux5zyjIerUf4bdPU5JqJOIPMDFzeTBfJXm30Pz_YW1o-NzUDfUZiczaL86-naIg0WnnNFsQh4P-nImFiUd7KDlxtgnnGwIP78zP9Or96qu4kxrb1l7SXYumJI2an/s1600/IMG_20150302_103331.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJqB9nF2NC_uMKr6Ihux5zyjIerUf4bdPU5JqJOIPMDFzeTBfJXm30Pz_YW1o-NzUDfUZiczaL86-naIg0WnnNFsQh4P-nImFiUd7KDlxtgnnGwIP78zP9Or96qu4kxrb1l7SXYumJI2an/s1600/IMG_20150302_103331.jpg" height="320" width="313" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I could climb this -- if I <i>wanted</i> to.</td></tr>
</tbody></table>
The drive to inpatient therapy is not short, and it'll mean weekly appointments in the Big City, but this boy is taking off -- and it seems for the first time in a long time that "catching up" might just be a thing for him. It will be a while yet, but we are so grateful.</div>
<div>
<br /></div>
<div>
<i>These amazing developments (well, other than the emergence of the sun) brought to you in part by nephrologists, fixers of the kidneys, and by bicitra, the medicine that is correcting J's renal tubular acidosis. This month is national kidney month. We remember you this month, kidneys. Thank you for keeping us alive, giving us energy, and helping us pee -- all year round.</i></div>
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Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-57416896679538242452015-02-26T18:01:00.000-05:002015-02-26T20:29:50.839-05:00"Do you ever wonder why (your baby was born so soon)?"<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOU1mDPENxGQiMizcCAY26V2nwz1eNqCLnR8EMfTQ6d269ZmbbKvT0S1zR6jc-RMHJRDinlUHD0gDvxEFquGo1MXrQ7n9NT5RlwR5RxO5jefcnLC_TGODKcMgkrwecShbH1c6IXEQ-uYY3/s1600/3775_10100276599165489_1041278746_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOU1mDPENxGQiMizcCAY26V2nwz1eNqCLnR8EMfTQ6d269ZmbbKvT0S1zR6jc-RMHJRDinlUHD0gDvxEFquGo1MXrQ7n9NT5RlwR5RxO5jefcnLC_TGODKcMgkrwecShbH1c6IXEQ-uYY3/s1600/3775_10100276599165489_1041278746_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Father and son<br />
<span style="font-size: xx-small;">Copyright held by the author. Do not reproduce without permission.</span></td></tr>
</tbody></table>
Last week Steve and I met a retired pastor. In the course of
our conversation, he learned about our son’s ridiculously early birth and
subsequent struggles.<br />
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<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
“When you think about your son, do you ever wonder, WHY?” he
asked.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
“For every 'why,' there are twenty-three 'thank you's,” Steve
responded.<o:p></o:p></div>
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---------------------------------------------------------<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
My answer would have been, “Yes. I often
wrestle with the ‘why.’ Why is he alive? Why can he see and hear and speak? Why can he walk and talk and play and make
jokes? Nearly every day I wonder why.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'm grateful my life partner is so much more eloquent (and concise!) than I.</div>
<div class="MsoNormal">
<br />
To celebrate Steve’s twenty-three “thank-you”s (I never did hear what they were), here are twenty-three of my own.</div>
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<br /></div>
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1.<span class="Apple-tab-span" style="white-space: pre;"> </span>Thank you for life through the night</div>
<div class="MsoNormal">
2.<span class="Apple-tab-span" style="white-space: pre;"> </span>For the opening of eyes and the ability to see</div>
<div class="MsoNormal">
3.<span class="Apple-tab-span" style="white-space: pre;"> </span>For plastic tubes and life-saving bleeps</div>
<div class="MsoNormal">
4.<span class="Apple-tab-span" style="white-space: pre;"> </span>For doctors and nurses</div>
<div class="MsoNormal">
5.<span class="Apple-tab-span" style="white-space: pre;"> </span>For breast milk</div>
<div class="MsoNormal">
6.<span class="Apple-tab-span" style="white-space: pre;"> </span>For the ability to hold one’s child</div>
<div class="MsoNormal">
7.<span class="Apple-tab-span" style="white-space: pre;"> </span>For the sound of a squeak of a cry</div>
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8.<span class="Apple-tab-span" style="white-space: pre;"> </span>For kidneys that work</div>
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9.<span class="Apple-tab-span" style="white-space: pre;"> </span>For intestines that digest</div>
<div class="MsoNormal">
10.<span class="Apple-tab-span" style="white-space: pre;"> </span>For therapists that understand and care</div>
<div class="MsoNormal">
11.<span class="Apple-tab-span" style="white-space: pre;"> </span>For laughing and smiles</div>
<div class="MsoNormal">
12.<span class="Apple-tab-span" style="white-space: pre;"> </span>For two staples and a scalpel used to heal a broken heart</div>
<div class="MsoNormal">
13.<span class="Apple-tab-span" style="white-space: pre;"> </span>For family and friends that stay away when sick</div>
<div class="MsoNormal">
14.<span class="Apple-tab-span" style="white-space: pre;"> </span>For family and friends that cleaned and cared and cooked when they were well</div>
<div class="MsoNormal">
15.<span class="Apple-tab-span" style="white-space: pre;"> </span>For PICC and central lines so that pokes are no longer needed</div>
<div class="MsoNormal">
16.<span class="Apple-tab-span" style="white-space: pre;"> </span>For brains and bodies that can get stronger – even if it takes hours of therapy</div>
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17.<span class="Apple-tab-span" style="white-space: pre;"> </span>For the groaned prayers and lit candles of friends around the world</div>
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18.<span class="Apple-tab-span" style="white-space: pre;"> </span>For the good sense to catch oneself when one falls – thanks for the vestibular system</div>
<div class="MsoNormal">
19.<span class="Apple-tab-span" style="white-space: pre;"> </span>For walking, and the tools that makes it possible</div>
<div class="MsoNormal">
20.<span class="Apple-tab-span" style="white-space: pre;"> </span>For talking, even if mumbled words</div>
<div class="MsoNormal">
21.<span class="Apple-tab-span" style="white-space: pre;"> </span>For peace beyond understanding when things are uncertain, and the comfort provided by sympathetic friends</div>
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22.<span class="Apple-tab-span" style="white-space: pre;"> </span>For perseverance</div>
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23.<span class="Apple-tab-span" style="white-space: pre;"> </span>For a chance<br />
<br /></div>
<div>
<br />
<i>What are your "why"s and your "thank you"s?</i></div>
Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0tag:blogger.com,1999:blog-7773853689095331267.post-47776262185132217572015-02-20T17:07:00.001-05:002015-02-20T17:18:24.747-05:00This weather has got to go<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH-_Xi1HVmZd7NVBZfD7tskr7b3moqiHjjuqKqRCA_TDhjs1u6g6bMehTbOeKEiZmBI6pDo4ypCF0SzYsegzTZBO5tkVSltU9GVXT9BlTjBFAnJCOoPNN16Svu0p2thSHkYuI0wiJ2bi33/s1600/snowyday.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH-_Xi1HVmZd7NVBZfD7tskr7b3moqiHjjuqKqRCA_TDhjs1u6g6bMehTbOeKEiZmBI6pDo4ypCF0SzYsegzTZBO5tkVSltU9GVXT9BlTjBFAnJCOoPNN16Svu0p2thSHkYuI0wiJ2bi33/s1600/snowyday.jpg" height="320" width="240" /></a>Let's be honest.<br />
<br />
I've not seen the sun for more than moments in two months. My doc was so alarmed by my vitamin D deficiency that she called a prescription dose of it in to the pharmacy. <a href="http://momofa23weeker.blogspot.com/2015/01/lessons-about-lifes-blind-spots.html">I've gone to events</a> just for the purpose of getting out of the house. I spend hours trying to get the online system from J's hospital to work so that I can read his test results as he struggles with morning lethargy and vomiting.<br />
<br />
The system still doesn't work. I even called their support services. Turns out that when I click on labs, it tries to send me all the labs at once. With a kid like him, that's enough to cause any computer to time-out.<br />
<br />
I told a doctor friend about the new tests JAM was getting. He immediately understood what the endocrinologists are testing for, so he gave me a new term and enough information for me to start on an online search of medical journals for answers again. I know I shouldn't. I know I should just wait. But information seeking is cathartic for me. It tells me what I know and what I don't yet understand. And I still don't understand JAM. Again we wait in the hard limbo of wanting answers and not wanting THESE answers.<br />
<br />
I worry and I cry and I am ready for the cold winter to be over.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfb3qIGTFS8dJ2PsqidEmzUAwGq9QfU9m7posIwvKqTuw2ULP7FAvMXor8gLz_hLKsX2CAxTU5dru5jVeIIuhKtadWjU2HNmRy_vdsGJr-J5YJzmQthveNan6-vPeG9k_HfR7zUq5yAJK/s1600/sunnycold.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfb3qIGTFS8dJ2PsqidEmzUAwGq9QfU9m7posIwvKqTuw2ULP7FAvMXor8gLz_hLKsX2CAxTU5dru5jVeIIuhKtadWjU2HNmRy_vdsGJr-J5YJzmQthveNan6-vPeG9k_HfR7zUq5yAJK/s1600/sunnycold.jpg" height="257" width="320" /></a>I am still <a href="http://momofa23weeker.blogspot.com/2015/01/how-third-year-of-isolation-was-best.html">glad he's in isolation.</a><br />
<br />
But being a parent of a medically complex child is difficult. JAM is a delight. The cares and worries that surround him are worth it.<br />
<br />
We're used to all the other stuff now. now. We don't bat an eyelash when we have to take out an emesis bag after he's stuck with a needle. We aren't afraid of gavaging in public. Getting blood draws is still hard, but we've toughened for the most part. Two times ago, J actually just sat and watched as they drew the blood. A squeak at the needle poke was his only protest. Last time they missed on the first try, so they had to draw blood again, and he wasn't so happy. As they searched for a second vein, he wailed "AGAAAIN!?" and proceeded with crying and "mommy! ba-ba! [bad, bad]"<br />
<br />
It is hard, but it is worth it. We are waiting for answers again, and my soul's as cloudy as our sunless sky.<br />
<br />
<br />
<div style="text-align: center;">
<i>WAIT</i></div>
<i></i><br />
<div style="text-align: center;">
<i><i>for the sun to come out again.</i></i></div>
<i>
</i>
<div style="text-align: center;">
<i>Storms always come<br />but they blow away with the wind.</i></div>
<div style="text-align: center;">
<i>So WAIT,</i></div>
<div style="text-align: center;">
<i>for the sun is coming again...</i></div>
<div style="text-align: center;">
-PFR</div>
Laura Maikatahttp://www.blogger.com/profile/14053957631788003703noreply@blogger.com0