MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'amelia'. Sat, 03 Sep 2011 02:54:44 +0100 http://www.medworm.com/index.php?rid=4498358&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2011%2F02%2Fnecessary-changes.html (That's right. I'm blogging about school on a Saturday.In case you hadn't noticed, by way of my 20 years ofschooling, I am a school junkie. I do school on Saturday.That's just how I roll.)At the very time she needs it most, school often gets pushed to the outskirts of our day. I'm sure it's an irony many parents have faced before me...the child with special needs is so overwhelming it is difficult to even attempt to meet them.In November, Amelia was diagnosed with two things: Episodic Ataxia, a disease that causes her to lose balance, depth perception, and speech coordination at random times throughout the day; and a sensory processing disorder, which basically means that she either can't sense or doesn't react to stimulation (touch, smell, taste, see, hear) the same way you and I do.Both ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4498358 Sat, 19 Feb 2011 11:35:00 +0100 4498358 http://www.medworm.com/index.php?rid=4436906&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2011%2F02%2Fmayo-marathon.html On the "day after" Mayo Clinic, I always take a stroll through some visual reminders of how far Amelia has come since October, 2009. The girl who couldn't sit, stand, walk, or see on day 1 in the hospital is flipping somersaults at a family gathering and giving us her big toothy grins, talking a mile a minute with the cutest lisp ever, and shocking the entire medical world with her nearly constant progress in regaining skills.To God be the glory.Yesterday was long and hard. It was supposed to be two quite simple appointments in the ear/nose/throat (ENT) department to examine a scarred area of Amy's throat, to see if there was any active infection. Instead, it turned into what we in this area of the country refer to as the "Mayo Marathon". Once you are there, they assume you have no plans f... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4436906 Fri, 04 Feb 2011 16:42:00 +0100 4436906 http://www.medworm.com/index.php?rid=4433293&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2011%2F02%2Fclinging.html There is just something different about having a little boy in the house. I came into my bedroom on Monday to find this...I immediately backed away quietly to grab my camera and when I came back, he was still unaware and high up on the window sill. The snow sparkling on the hill outside our bedroom window must have beckoned him climb up.We all need a dose of new perspective every now and then. I get it occasionally when I stoop to my son's level and see the world from a new angle.Yesterday I got a dose of new spiritual perspective. I know I'm redeemed. I know He says He won't remember my sins anymore. That, theoretically, I'm hid away in Christ.But it just hasn't made a dent.I think I saw it for the very first time yesterday. My mom reminded me that she tried to tell me on my 21st birthday... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4433293 Thu, 03 Feb 2011 10:08:00 +0100 4433293 http://www.medworm.com/index.php?rid=4294945&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F12%2Fto-my-youngest-daughter-on-her-weaning.html I remember the day you were born, when you nursed so hard and long that your tiny stomach was hard as a rock and you couldn't even breathe. I remember the day you weaned yourself at 13 months when I put you off once too many and you decided your pacifier was more reliable than your mother for comfort. I remember the day I started giving you a bottle because I had to wean your brother so he wouldn't drink my poisonous milk during cancer treatment. I remember the day I took your bottle away and you begged me to nurse you and I couldn't do it because my milk was still poisonous. I remember the day you quit talking and walking and couldn't even hug me back, and I gave you a bottle because for some reason, on that horrible day, the one thing you could remember was how to suck.I remember th... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4294945 Mon, 27 Dec 2010 23:26:00 +0100 4294945 http://www.medworm.com/index.php?rid=4175925&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fcoming-undone-mayo-day-6.html Step 1. Remove dressing & netting around head.Step 2. Soothe child with favorite thing (in this case: bottle).Step 3. Remove tape, gauze, and electrodes from head using acetone (sting!).Step 4. Understand why child has been screaming & itching head for last 48 hours.Step 5. Finally: the awaited-for-a-whole-week bath.Step 6. Try another bottle.Step 6. How about some Benadryl for that itching?Step 7. Go HOME! (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4175925 Wed, 17 Nov 2010 14:38:00 +0100 4175925 http://www.medworm.com/index.php?rid=4172299&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fparents-trapped-in-hospital.html We are on our way home today, so I am re-posting something from the archives! Of course, I've added a few touches from the added experience of the past week. As well as photos. This yellow wheelchair has been in the hallway our entire stay, and as I hurriedly rush out to get water or milk for Amy, I have seriously wondered if an angel can impersonate a wheelchair. Even in my darkest moments here, this wheelchair has brought a smile to my face. If I ever become an invalid, I am ordering myself one of these!Ever have a friend whose child is hospitalized? I found an excellent resource online shortly after my son Caleb was unexpectedly hospitalized for a week last April. This list of things to put in a gift basket for a parent whose child is in the hospital is just about perfect. My friend Hea... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4172299 Tue, 16 Nov 2010 14:02:00 +0100 4172299 http://www.medworm.com/index.php?rid=4168155&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Ffelt-prayers-mayo-day-5.html Suffice it to say she hasn't itched since the prayer comments started pouring in. Well, that's not entirely true: she has stated, a few times, in a very calm voice, "Mama, I am itchy. Can I have some medicine please?" TADA! Prayer at work, people!! Thank you to each and every one who dropped everything to pray for something as small as the comfort of one little kid today. She's more subdued than usual, pale and under the weather as her cough worsens every day. But she has not been screaming in pain! These pictures are from our evening play session a few minutes ago.Now to him who is able to do far more abundantly than all that we ask or imagine, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. (Ephesia... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4168155 Tue, 16 Nov 2010 03:26:00 +0100 4168155 http://www.medworm.com/index.php?rid=4168156&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fwhen-you-are-helpless.html The results from this hospital stay are so depressing on so many levels. Last night Amelia started reacting horribly to the glue used to attach the electrodes all over her scalp (about 30 of them). She screamed, thrashed, and begged me to remove them, all while shaking her hands in the air because she was obeying and not scratching at them. When I finally got her to sleep at 4 a.m., I vowed not to let them touch those electrodes again...just take whatever information they can get, without the usual morning process of gluing loose electrodes and filling them all with conducting gel again. At 11:30 a.m., I praised God because they hadn't come to do so yet, although they are usually here by 9 a.m....I assumed this meant the electrodes had by some mercy survived the night intact. So I allowed ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4168156 Mon, 15 Nov 2010 18:41:00 +0100 4168156 http://www.medworm.com/index.php?rid=4164671&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fall-together-mayo-day-4.html Minnesota is in the dreary early winter stage. The snowflakes falling have been beautiful! Oddly enough, just 80 miles north, in the Twin Cities, they received a true blizzard, not just flurries - over 10" in some areas, I think?The lines on Amy's little head are so lyrical with this little headdress.Painting nails was a favorite activity for both Amy and Rosy!  Never before have I spent the time to do multiple coats of color, PLUS the glittery top coat! I am afraid I have falsely elevated their expectations and it will come back to haunt me some busy evening when I am bathing them...Movie time!Doing her evening "stretches" in bed this evening.I think she's got a hockey goalie somewhere inside!Playing computer games - Olivia's painting game was a hit!(click on "Fun with Oliv... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4164671 Mon, 15 Nov 2010 03:07:00 +0100 4164671 http://www.medworm.com/index.php?rid=4163032&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fgetting-bit-stir-crazy-mayo-day-2.html Amy started getting a bit stir-crazy today on day 2 of being confined to bed. By this I mean she started doing things like hopping up and down all around her room, doing jumping jacks, and trying to jump on her hospital bed. Trust me, hospital beds do not "jump" well! She also triggered the seizure episode alert system at least a dozen times. Which is a bit irritating for everyone - especially the staff - as it brings about 5 nurses running full tilt down the hallway to save her life in the event of a bad seizure!It wasn't until after midnight last night that I finally got her to sleep, after much cuddling, reading of books, singing of songs, drinking of milk, and attempting to bounce on the bed. Tonight, we read the incomparable "Olivia" by Ian Falconer...and giggled that "Olivia" could b... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4163032 Sat, 13 Nov 2010 09:00:00 +0100 4163032 http://www.medworm.com/index.php?rid=4159437&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fevening-in-hospital-mayo-day-1.html  Joy of a visit from siblings in the hospital.Playing with the vintage window panes in the old hospital wing.Yeah for new toys!$50 at the hospital gift shop = 20 minutes of peaceful play.A single closet in the hospital room (free) = 1 hour of playing "bus" with glee!If this eldest sweet girl doesn't become a nurse like mom & dad...I'll be shocked.She spent the whole visit watching over Amy's various wires and cords.Making sure they don't get caught in the door of the closet......or stepped on by the crazy off-boarding bus passengers.Can you really be sick if you're having this much fun?And finally...they have the BEST therapy dog here. Ever. A Newfoundland.Only problem: owner has to carry around a towel to wipe up the spit! (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4159437 Fri, 12 Nov 2010 11:01:00 +0100 4159437 http://www.medworm.com/index.php?rid=4159438&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Famy-joins-teletubbies-mayo-epilepsy.html If you are new here, you may not have heard about my daughter Amelia, who survived a life-threatening brain infection at age 3. After her infection, she suffered a second assault on her tiny body...an auto-immune reaction to the infection stripped her brain of it's protective fatty myelin coating that insulates all the nerves. After completely losing the ability to walk or sit unassisted, feed herself, swallow and chew, and suffering severe speech, hearing, and vision losses, she made a dramatic recovery that can only be credited to God (with help from a hefty dose of steroids for 6 months straight). To read more about Amelia's original illness, click the tab at the top of the page above my blog name.Amelia was hospitalized today to investigate her one remaining issue: a severe seizure dis... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4159438 Fri, 12 Nov 2010 00:30:00 +0100 4159438 http://www.medworm.com/index.php?rid=4142962&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fliver-face.html Weekends are for...um, loosening up a bit?Not asking your kids to eat liver and onions for dinner?What's for dinner at your house today?We're not serving liver and onions...for a long, long time! (At least to our kids) (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4142962 Sun, 07 Nov 2010 20:35:00 +0100 4142962 http://www.medworm.com/index.php?rid=4125232&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F11%2Fnote-to-heaven-i-need-help.html I traveled this weekend, to the funeral of a dear great-aunt who lit the world with her kindness and housed me for many halcyon childhood nights in her rambling farmhouse in a field on the flats of the White Earth Indian Reservation. Her sons bent to scoop the mound of dirt onto her urn with their hands, loving her so much they didn't even use the spade to scrape the dirt back over what remained of her gentle and beautiful body.And in the pale yellow light of early afternoon, a trouble brewing deep in my body for weeks blossomed and felled me to my knees in a church bathroom. I fainted several times, grew gray, heart aching and throbbing and that horrible sense of dread rising like a lump in the throat. I guess I was out of it enough, gray enough, to cause many relatives concern...which ma... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4125232 Mon, 01 Nov 2010 11:19:00 +0100 4125232 http://www.medworm.com/index.php?rid=4055922&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F10%2Falways-goodor-never-good.html We know from all his writings that Paul trusted not only that God is sovereign, but also that his character is faithful and good (1 Thessalonians 5:24). It's critical for Christians to believe this, too. Why? Because without these additional attributes, we could view an absolutely sovereign God as a potential big bully. If I can't trust that God is always good and faithful, then God goes on trial with each particular circumstance of my life. I become the doubter who's like the waves of the sea, always being tossed about (James 1:6).Of course, it's easy to say I'm confident that God's faithful when I've escaped a negative situation, but is he still faithful when the friend I've lifted up in prayer for more than 30 years has never returned to faith in Jesus? Or when I was diagnosed with brea... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=4055922 Mon, 11 Oct 2010 15:00:00 +0100 4055922 http://www.medworm.com/index.php?rid=3994264&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F09%2Fin-still-of-night.html In the last few weeks, Amelia has begun having a very scary type of seizure with increasing frequency.  Back in July, she had one nocturnal seizure (a seizure that takes place during the night while the child is asleep).  Now, in the past three weeks, she has had a seizure about 50% of the nights, usually when she is just falling asleep, but sometimes in the middle of the night.  These seizures are generalized, and involve the whole icky seizure spectrum, from vomiting and incontinence, to post-seizure echolalia (saying the same thing over and over and over and over...ad nauseam), anxiety and sometimes even a period of intense wakefulness before she crashes into a very long sleep.  The morning after these seizure nights, she sleeps very late in the morning, sometimes un... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3994264 Wed, 22 Sep 2010 15:34:00 +0100 3994264 http://www.medworm.com/index.php?rid=3960055&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F09%2Fplumping-up.html I never thought I'd have to encourage my kids to eat.  I certainly have no problem loving food myself...although I do have vague memories of battles over sauerkraut, mustard, rye bread and polish sausage when I was a small child.  Anything that awakened the palate was too spicy for me.  But since becoming a mother myself, I've become more aware of feeding issues.  And I assume my kids are probably easy to feed compared to many...breastfed until 5-6 months and started directly on hand-ground table food, they never had flavor or texture aversions suffered by many children today.We started getting the evil eye from our pediatrician back when Rosy wouldn't gain weight or grow taller.  She wore 3-6 month clothes until 18 months, and 6-9 month clothes until after age 2. ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3960055 Sat, 11 Sep 2010 12:25:00 +0100 3960055 http://www.medworm.com/index.php?rid=3899606&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F08%2Fgod-knows-best.html Summer has been quiet at the Thul household.  At least the majority of it - if you start counting after July 4th.  The past month has been pretty good, a welcome reprieve from suffering.  A vacation from days spent mulling over big questions with no obvious answers.  It's been good to step back from intellectual debate and just experience summer with kids in hand and God shining through brightly from above.  This past week has been a bit of a step backward.  It's always a decision whether to blog about the bad.  But that's what this blog is about.  It's a journal of pain and how we survive it.  A journal of brokenness and what heals us.  So, while it is a delight to celebrate when things are going well, it is also a duty to speak when struc... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3899606 Wed, 25 Aug 2010 02:46:00 +0100 3899606 http://www.medworm.com/index.php?rid=3776582&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F07%2Fmiracle-month.html Something amazing has happened.  And there is really no way to tell you about it, except with a few pictures.Here's the first photo.  Notice the writing on at least 50% of the dates on this calendar.  This is Amelia's episode record, which helps her team of doctors at Mayo decide how to adjust medications, whether to consider surgery, determine whether she needs to be hospitalized or not.  May and June were two very terrible months for both her and her parents.But THIS is July.  Four days of partial seizures on our travels, in a high stimulus car.  No poop in the pants.  Only a few episodes of vomit.  An Amelia who is almost completely potty trained again for the first time since October, 2009!  An Amelia who smiles more than she fusses, and is ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3776582 Wed, 21 Jul 2010 11:44:00 +0100 3776582 http://www.medworm.com/index.php?rid=3764116&cid=t_305787_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2010%2F07%2Fsurgeons-amelia-pare-judy-ross-curtail-practice-unsuccessful-malpractice-suits%2F Pennsylvania surgeons Drs. Amelia Pare and Judy Ross have successfully defended themselves against multiple malpractice suits, but have had to stop or curtail operating on patients because the cost of defending themselves in court has been deemed too high by malpractice insurance carriers. According to Dr. James A. Goodyear, President of the Pennsylvania Medical Society, 85% of all malpractice cases in that state that go to trial result in a verdict for the plaintiff, an argument that too many cases are proceeding than merited. Pennsylvania requires a certificate of merit for successful prosecution of a case, but this generally does not bar a suit from being filed, especially by a pro se plaintiff, who generally does not need to meet as high a bar as legal professionals in pursuing tort a... Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=3764116 Sun, 18 Jul 2010 17:37:00 +0100 3764116 http://www.medworm.com/index.php?rid=3655773&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F06%2Fyes-you-can-swallow-upside-down.html ...and other ways to say, "life goes on."That should be the title today.When I took these photos, I imagined some creative, helium-filled happy words about the joys and simplicity of homeschooling. It was the day we learned about the digestive system and I taught the girls about peristalsis. But life intervened, and I never wrote helium-filled happiness, all through a week without seizures and preparing for a long-awaited visit from old friends, and finishing work to meet deadlines, and doing the fall and spring cleaning I missed last fall, last spring.We kept swallowing, through all those good days of hard work and elbow grease. Nothing seemed too terribly upside down. And tonight it doesn't, either - seem upside down, I mean. It's just a normal night. I can't sleep because the day was st... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3655773 Sat, 12 Jun 2010 06:50:00 +0100 3655773 http://www.medworm.com/index.php?rid=3546994&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F05%2Ffloating.html For this little girl, the best medicine is and always has been the bath. She had two seizures on Friday and took 4 baths. I reveled in the unbroken beauty of her spirit and her lithe figure, even in illness. She is preserved, so completely. Happy mother's day!Reminds me that, in addition to our brains and our science and our technological advances, we were first given herbs, wine, bread, oil (Psalm 104). The smallest blessings (running water, heated water, a large antique clawfoot tub) are sometimes the grandest life has to offer.He is jealous for me, Loves like a hurricane, I am a tree, Bending beneath the weight of his wind and mercy. When all of a sudden, I am unaware of these afflictions eclipsed by glory, And I realise just how beautiful You are, And how great Your affections are for ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3546994 Sun, 09 May 2010 11:47:00 +0100 3546994 http://www.medworm.com/index.php?rid=3404104&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fday-of-chaos.html One year and four months ago, the duct-taped wonder also known as the "Ghetto Dryer" slowly died. A $50 miracle - the matching dryer to our splurge of a front-loading washer - replaced it. The dryer struggles shone a light on some spiritual unrest deep within, and I wrote about it in detail back in December, 2008. Tonight, the miracle dryer started on fire. Somehow or other, a metal headband got thrown in with the wash, plugged itself in to the circuitry at the rear of the dryer, and electricity and smoke billowed forth. The fix was simple - the flames hadn't actually burst out yet, and opening the dryer door stopped the flow of electricity. However, the heating element seems to have taken the brunt of the damage, so the dryer is probably kaput. Aaron and I ran around locating the fire ext... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3404104 Thu, 25 Mar 2010 12:00:00 +0100 3404104 http://www.medworm.com/index.php?rid=3387028&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fhumbled-tested-blessed.html Life is hard and life is good. "That he might humble you and test you, to do you good in the end" (Deuteronomy 8:16). ~ John Piper's tweet today at 1:30 p.m.That morning, we watched two friends hands run the length of a tiny casket, draped in a blue knit baby blanket, that final touch symbolic of the life and death the casket held: short and sweet. It's the second time we've watched them walk this road of sorrow, the second baby they lost the same day they met him. Two sons - Josh and Jake - arrows now around God's table in heaven instead of around theirs here on earth. We passed through their darkness on the way to our own. A side trip on the way to Mayo to find out what was wrong with Amelia. The pale turquoise of the spring sunlit sky belied the shadow of the valley we felt deep inside.... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3387028 Sat, 20 Mar 2010 20:40:00 +0100 3387028 http://www.medworm.com/index.php?rid=3385530&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fgood-news-bad-news.html I always start with the good news. Always. Today we received news that the flattening of Amelia's optic nerves (a sign of damage) is gone since the latest spinal tap. Her optic nerves also look very healthy on the MRI brain scan, and the channels that drain fluid around the brain stem are completely open. They had previously been partially blocked by her swollen brain stem. Her MRI is, in fact, completely and totally normal for the first time since October. It appears that she suffered two distinct demyelinating events, one in October, and another in November. This does not yet meet the criteria for multiple sclerosis, so, at least for the time being, that has been eliminated as a potential diagnosis.Her spinal tap did indeed reveal high pressure in her spinal column. As yet we have absolu... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3385530 Sat, 20 Mar 2010 00:58:00 +0100 3385530 http://www.medworm.com/index.php?rid=3383044&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Feeg-is-completed.html Amelia's EEG (electroencephalogram) went well today. She was able to cooperate fully, so the entire test was done, very unusual for a 3 year old! I was proud of her - especially the brief crying she did when the tech sanded her scalp with first sanding paper and then the wooden end of a cotton swab! She has about 20 tiny dots where the hair has been completely removed. And those of you who know Amelia know - that is a lot of hair to remove!!At this point, it was all fun and games, especially since her size hat just "happened" to be her favorite color, yellow. Isn't God amazing? He cares about the smallest of details!The test yielded some "abnormal" results. Although I don't know what exactly that means yet. The tech just told me that there were some abnormalities when Amelia was sleeping,... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3383044 Fri, 19 Mar 2010 05:30:00 +0100 3383044 http://www.medworm.com/index.php?rid=3374347&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fmri-today.html At the ECHO homeschool demonstration night in February, telling our group about our unit study stemming from the Little House on the Prairie series. Amelia's disconjugate gaze is very apparent in this photo.Amelia has an MRI today at around 2 p.m. Please keep her in your prayers as this will be the second day with heavy duty anesthetic used for sedating her for procedures and tests. Please pray that she won't vomit while she is unconscious, and that she will wake up quickly and easily from the anesthesia. The MRI should take about 1 1/2 hours. I will try to post an update this evening. Thank you, friends & family! (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3374347 Wed, 17 Mar 2010 17:03:00 +0100 3374347 http://www.medworm.com/index.php?rid=3374348&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fupdate-from-mayo-day-1.html Waiting it out in the Luther observation unit last Wednesday with Melanie York.Just a quick 10 p.m. note from one tired Mama to let everyone know that Amy is doing well and she is still an outpatient! There were a few harried moments when she did not handle anesthesia as expected. Because there are some question marks related to her blood work from last Thursday that need further interpretation from a geneticist, the anesthesiologist was forced to use a different type of anesthesia for Amelia's spinal tap today. (We don't have any further details about the blood tests, or I would share) The anesthesia type she has had in the past for sedated procedures, Propofol, has caused no reaction or prolonged waking time. However, the gas form that was used today put her much too deeply to sleep. The... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3374348 Wed, 17 Mar 2010 03:11:00 +0100 3374348 http://www.medworm.com/index.php?rid=3366399&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fschedule-next-week.html Amelia in her new hospital bed on Saturday.I don't have time to write more, so...please pray for us at Mayo this week!The conditions Amelia is being evaluated for over the next week or so are listed below:Bacterial infection of the central nervous system with Propionibacterium acnesGenetic mitochondrial disorders, such as Leigh syndrome or MELASPseudotumor cerebriPanayiotopoulos syndromePediatric multiple sclerosisMultiphasic or recurrent acute disseminated encephalomyelitis (MADEM)Her schedule at Mayo Clinic includes the following tests:Spinal tap, or lumbar puncture, which is similar to receiving an epidural during laborMRI (magnetic resonance image) and MRV (magnetic resonance venogram) of the head; the MRV hasn't been done ever before, and will examine the veins helping drain her brain... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3366399 Sun, 14 Mar 2010 21:15:00 +0100 3366399 http://www.medworm.com/index.php?rid=3362550&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fhome-is-heaven.html We are home for the weekend. The neurologist at Mayo, Dr. Suresh Kotagal, seems as concerned as we are...although more certain that Amelia won't become critically ill in the next few days. The schedule at Mayo is such that her first test was not able to be scheduled until Tuesday. However, we do have a plan of action if she should become more ill between now and Tuesday - involving a "lights and sirens" ride from Luther to Mayo for in-patient care. Knowing that makes me feel confident enough to be home.Today I am busy utilizing the kind help of the York girls as we rearrange furniture in order to fit a hospital bed into the small room the children sleep in. Amy needs to have her head elevated at all times to avoid complications related to the increased pressure surrounding her brain, and a... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3362550 Fri, 12 Mar 2010 20:19:00 +0100 3362550 http://www.medworm.com/index.php?rid=3346677&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Ffresh-wounds.html Last week, we had a glorious day outdoors, revisiting Echo Woods, the Climbing Maple Tree, checking sap buckets. We found fresh wounds on many of the maples, burrowed by a giant Pileated Woodpecker. The shavings and sawdust littered the snow up the path through the woods. We explored the holes with our hands, revisited lessons from last summer about identifying trees from their bark, noted the differences in the phloem, that inner bark where the trees life flows.The days this week are notably different. Every day, Amy's fresh wounds become more apparent. She sleeps more with each passing day, and vacillates between manic hyperactivity and groggy irritability when she is awake. She has set up camp on one end of the sofa, with her favorite "pillow pet" from Auntie Megan and Uncle Ben, her ba... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3346677 Tue, 09 Mar 2010 01:31:00 +0100 3346677 http://www.medworm.com/index.php?rid=3342858&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fgoing-forth.html Prayers today as I go fight for treatment for Amelia. Please see my prayer request list from yesterday afternoon here. I am praying for the quickest and easiest solution to be made possible. (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3342858 Mon, 08 Mar 2010 13:02:00 +0100 3342858 http://www.medworm.com/index.php?rid=3342859&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fcliffs-notes-amelias-infection.html He will make plain my duty when the time comes, and until then it is not my concern. We make our lives insupportably complex by disobeying Jesus' command to take no thought for tomorrow. Planning for tomorrow, when planning is necessary and possible, belongs properly to today. Worrying about tomorrow belongs nowhere. The Lord gives us daily, not weekly, bread. He gives strength according to our days, not our years. The work, the suffering, the joy of each day are given according to His careful measure. ~Elisabeth Elliot, A Path Through SufferingIt became apparent to me that an abridged version might help some understand what Amelia is battling currently. As a nurse, I struggled with this all the time: immersed in medical jargon and mumble-jumble on one side of the door, and t... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3342859 Sun, 07 Mar 2010 22:36:00 +0100 3342859 http://www.medworm.com/index.php?rid=3339780&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Funanswered-prayer.html I have unanswered prayersI have trouble I wish wasn't thereAnd I have asked a thousand waysThat You would take my pain awayI am trying to understandHow to walk this weary landMake straight the paths that crooked lieOh Lord, before these feet of mineWhen my world is shakingHeaven standsWhen my heart is breakingI never leave Your handsYour hands that shaped the worldAre holding me, they hold me still~ Your Hands, J.J. Heller ~The bacterial culture done on Amelia's spinal fluid last week grew a particularly rare anaerobic bacteria, Propionibacterium acnes, on Wednesday, 5 days after the fluid was removed from her body. This bacteria is a common skin bacteria, and usually only causes meningitis or encephalitis in children with hardware in their brains (VP shunts) or post-neurosurgical patients... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3339780 Sun, 07 Mar 2010 04:30:00 +0100 3339780 http://www.medworm.com/index.php?rid=3331545&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F03%2Fhe-goes-before.html An opthamologist from the U of M requested photos of Amelia before and after her illness where her conjugation (tracking) could be seen. I found it interesting that I had a hard time finding any photos of her eyes not tracking in my blog folder, where I keep my favorite photos. I found many more in the snapshot folder. Here are a few I sent him:Amelia in September, prior to encephalitis.Amelia 2 days before hospitalization for encephalitis - already sick.Amelia on day 8 of hospital stay #1.Amelia after discharge from hospital stay #2.Amelia during hospital stay #3.I did a lot of research two days ago, and found much that was useful. A lot of it is scary, too. I found some helpful information about the effects of encephalitis on behavior at a UK site. The "tips" way down at the bottom are e... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3331545 Thu, 04 Mar 2010 18:27:00 +0100 3331545 http://www.medworm.com/index.php?rid=3311903&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F02%2Freflection-from-trenches.html Each time the mystery of suffering touches us personally and all the cosmic questions arise afresh in our minds we face the choice between faith (which accepts) and unbelief (which refuses to accept). There is only one faculty by which we may lay hold of this mystery. It is the faculty of faith, and "faith is the fulcrum of moral and spiritual balance". It helps me, at such a time of bewilderment and sorrow, to go to some of the simplest words, such as I am the good shepherd. My Lord chose that description of Himself, and He does not change. He was and is and always will be my shepherd. The word fits my need, for I am a sheep, helpless and bleating. He cannot foget one for whom He lays down His life. I bank everything on that.~ Elisabeth Elliot, A Path Through Suffering: Discovering the Re... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3311903 Fri, 26 Feb 2010 06:00:00 +0100 3311903 http://www.medworm.com/index.php?rid=3307060&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F02%2Fno-tests-today.html No time slots were available in the operating room today, so no tests today for dear Amelia. Her tests are scheduled for 2:30 p.m. tomorrow. She was pretty excited to order breakfast this morning!Amelia slept soooo much better on the hospital bed (usually the reverse is true!). The adjustable bed made all the difference, as she slept in a sitting position all night long. I think it was the best sleep she's gotten since Friday night, when this all started to escalate. She was up at 7, raring to go on her trike, roaring through the halls and terrorizing the tired night shift workers. She started vomiting this morning, never a good sign, especially when the child isn't nauseous. But she's perfectly happy, regardless! What a trooper. (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3307060 Thu, 25 Feb 2010 14:52:00 +0100 3307060 http://www.medworm.com/index.php?rid=3307062&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F02%2Famelia-in-hospital-again.html Quite unexpectedly, we are back in the hospital with Amelia again today. She has had a bad couple of days, as I've written here. She is having what may be some partial, or focal, seizures. She is also having an increase of symptoms that indicate a climbing pressure surrounding her brain. She was admitted primarily for testing, and to evaluate how stable her neurologic status is in a safer setting. Today she had a short EEG (electroencephalogram) to get a baseline of her brain wave patterns under certain conditions. She did not have any seizure activity during the test, although she wasn't really expected to. The test was to rule out the possibility of more severe seizures. Tomorrow, her neurologist is trying to shoehorn her into an operating room time slot for more tests. If they find a ti... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3307062 Thu, 25 Feb 2010 03:46:00 +0100 3307062 http://www.medworm.com/index.php?rid=3259205&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2010%2F02%2Fall-things-western.html Even the kids are entrenched in the Western theme this week, with the Valentine's Day event fast approaching. We got a vintage horse-on-springs from our local Freecycle list, and it is the current object of most affection around our house. Amy's eye issue persists, as you can plainly see here. However, she seems to be falling less now that she has been on a steady high dose of steroids for a full month without any attempt to wean. I have hopes the eye issue will resolve in the next month prior to seeing her neurologist again in March.I am off to shop for massive quantities of groceries today, with my mother's help. I covet your prayers for my marriage. We are still thrown for a loop by the marriage conference we attended. I feel like a big "Under Construction" sign should be criss-crossed ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3259205 Wed, 10 Feb 2010 14:15:00 +0100 3259205 http://www.medworm.com/index.php?rid=3026888&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fthat-old-familiar-place.html I was admitted to the hospital today with a double kidney infection that has also invaded my bloodstream. Prayers are appreciated - for quick healing, some type of family celebration for the holiday, and rest for me in the hospital. It's been a wild month. Amy is also showing recurrence of her symptoms since starting the steroid wean. That has put a whole bunch of scary diagnoses back on the table, so to speak. Please keep her little brain in your prayers. We are thanking God this Thanksgiving...for her wholly intact spunky sweetness today. (Source: Turquoise Gates) Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=3026888 Wed, 25 Nov 2009 04:19:00 +0100 3026888 http://www.medworm.com/index.php?rid=2999826&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fsee-our-tears.html A long, giggly conversation with a good friend was just what I needed. That, and remembering what their family has been through. Remembering that this trial will not consume me. This trial will not erase what has gone before, nor will it render mute the future God has in store for us. It is just a low valley in the middle.My friend's dad was held in captivity in Eastern Europe, while his daughter and her family faced crisis after crisis in the health of their tiny son, Caleb. We named our own son after this amazing little warrior for the Gospel. What that grandfather must have been thinking as he sat, locked up and helpless, and prayed the prayer of Hezekiah from the Old Testament! How encouraged I am tonight as I read that story and believe anew that, as Jesus told us, "With people this i... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2999826 Tue, 17 Nov 2009 14:22:00 +0100 2999826 http://www.medworm.com/index.php?rid=2999827&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fwhat-time-i-am-afraid_16.html , I will trust in Thee; In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me. Thy vows are upon me, O God: I will render praises unto thee. For thou hast delivered my soul from death: wilt not thou deliver my feet from falling, that I may walk before God in the light of the living? (from Psalm 56, KJV)I received a call from the neurologist today. Amelia has been formally diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a form of leukodystrophy. She may also have Vanishing White Matter Disease (VWM), another much more severe form of leukodystrophy. The diagnosis of this, or exclusion of it as a potential diagnosis, will be made over time after one or more additional MRIs have been taken. I think it is reasonable that all of you who ... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2999827 Tue, 17 Nov 2009 01:08:00 +0100 2999827 http://www.medworm.com/index.php?rid=2993918&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fhome-again-just-as-suddenly.html Amelia was discharged this afternoon. After two doses of steroids and some I.V. zofran to fight the vomiting, she was tolerating liquids and keeping them down, and she was no longer running a fever. Our favorite neurologist was on, and took 2 1/2 hours to observe Amelia and take me through the images from each of her CT scans and MRIs. The results of the latest MRI are sobering. The scan showed increased damage in her cerebellum (which is responsible for balance, some speech, coordination, and fine motor skills), and now damage elsewhere in her brain, in her temporal and occipital lobes on the right side. The temporal lobe damage may manifest in auditory sensation/perception, inability to selectively pay attention to visual or audio stimulation, impaired visual perception, inability to org... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2993918 Sun, 15 Nov 2009 01:00:00 +0100 2993918 http://www.medworm.com/index.php?rid=2984996&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fhis-perfect-love-is-casting-out-fear.html Amy began vomiting, having increased headache, loss of balance, and sleepiness as the day went on yesterday. We went to the Eau Claire ER, where our doctor had paved the way for a quick transfer back to Fairview-University Medical Center in Minneapolis. Amy felt somewhat better by the time we were transported, thanks to some anti-nausea medication that slowed the vomiting. She got her dream ride in an ambulance with lights and sirens on the way to the Cities! I think the ambulance team got a kick out of having someone enjoy the ride for once!Today Amy is scheduled for a sedated MRI at 3:30 p.m. She is walking a little better this morning, although still listing to the side and tipping if unassisted. She is sitting well, which is better than last time we went through this. Her eyes look pre... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2984996 Thu, 12 Nov 2009 14:37:00 +0100 2984996 http://www.medworm.com/index.php?rid=2967498&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F11%2Fwelcome-home-amelia.html We left the hospital yesterday around 3 p.m. Amy was literally grinning ear to ear for the last three hours of her stay there. The nurses and doctors were thrilled to get a glimpse of the "real" Amy before we left! She brought dark chocolates out to her doctors and nurses, and even thanked them without prompting. Very cute! She is skinny, and pale, and shaky, and her eyes are still crossed. But she is totally Amy! I am so abundantly thankful for that. What a blessing!When you are three, you get to ride out of the hospital in a wagon, not a wheelchair. What fun. Amy took a trike ride over to the family lounge when I went to collect my food from the fridge. While there, I met another mama whose daughter was admitted the same day as Amelia with viral encephalitis. She was quickly moved to the... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2967498 Fri, 06 Nov 2009 16:06:00 +0100 2967498 http://www.medworm.com/index.php?rid=2944056&cid=t_305787_136_f&fid=39016&url=http%3A%2F%2Fturquoisegates.blogspot.com%2F2009%2F10%2Fcrashing-down.html When the rain comes it seems that everyone hasgone awayWhen the night falls you wonder if you shouldn'tfind someplaceTo run and hideEscape the painBut hiding's such a lonely thing to doI can't stop the rainFrom falling down on you againI can't stop the rainBut I will hold you 'til it goes awayWhen the rain comesyou blame it on the things thatyou have doneWhen the storm fadesyou know that rain must fallon everyoneRest awhileit'll be alrightNo one loves you like I doWhen the rain comesI will hold you~ When the Rain Comes, Third DayAmelia was diagnosed "empirically" (without laboratory evidence) with viral encephalitis today. A new team of doctors was added, the infectious disease specialists. The lead doctor of this team seems to be channeling a slightly kinder version of Dr. House, which we... Turquoise Gates blogs http://www.medworm.com/rss/comments.php?id=2944056 Fri, 30 Oct 2009 03:05:00 +0100 2944056 http://www.medworm.com/index.php?rid=2674435&cid=t_305787_131_f&fid=34989&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FGeneticsHealth%2F%7E3%2FDxOYM1EYm0Y%2F Amelia Earhart may have lived more than 110 years ago, but she still holds as much (if not more) appeal when she died as when she was alive. For starters, she was the first female to fly solo across the Atlantic Ocean, and would have made the longest round-the-world flight had she not crashed somewhere in the Pacific. Her remains and that of her airplane were never found, although the skeletons of a tall, Caucasian female, some ound in Gardner Island (now Nikumaroro) in 1940. Unfortunately the skeletons were misplaced years later, and Amelia Earhart’s disappearance stayed unsolved through much of the 20th century. Some believe that Earhart survived the crash and lived on the island. With nothing but that theory, Ric Gillespie and the International Group for Historic Aircraft Recovery (... Genetics and Health blogs http://www.medworm.com/rss/comments.php?id=2674435 Thu, 06 Aug 2009 11:03:00 +0100 2674435