Next Appointment

Next Appointment

I’ve been waiting about a month to hear from the cardiologist office.  E continues to see Dr. Dietz in Baltimore, but we need a local cardiologist for him, too.  Need may not be the right word, but it makes me feel more comfortable.  In the event of an emergency, I want someone local that knows him and understands Loeys-Dietz Syndrome.  Plus, there are times we can’t make it to Baltimore every six months so having someone local that follows him, as well, and can oversee his echos is a good thing.

Now is one of those times we can’t get to Baltimore.  And E needs an echo.  His last local cardiologist left the area so we will be seeing a new doctor.  His name is Dr. Lisi who has worked with Dr. Dietz in the past so I was thrilled.  So thrilled.  Dr. Jewett, our local geneticist, recommended him so that is all the endorsement I needed.

About a month ago I spoke with Dr. Lisi’s scheduler.  He was going through all of E’s records to see what might be needed and to prepare.  I heard back from them today.  I’m I the only one who finds it very coincidental timing that I heard from this office the day after E had a different appointment with another new doctor at the same hospital?  Anyway…..Dr. Lisi’s office had an opening for a few weeks from now, but that was smack in the middle of final exams.  Thankfully, they were accommodating and comfortable with seeing E after school is out.  So he’ll be at Brenner’s May 30 for the ENT follow-up (and potential CT scan) and then again for the cardiologist and echo on June 6.  Will update once we have the visits and get information.

 

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New Doctors

New Doctors

Eddie met a new audiologist and ENT today.  He doesn’t dread the ENT, but he doesn’t look forward to those visits.  E has had the same local ENT since he was an infant and the man is so kind.  He has an amazing bedside manner and has even come into the office on a Saturday one time to see E.  However, he does not adhere to a super conservative approach when it comes to surgery.  And he doesn’t know a lot about Loeys-Dietz Syndrome…..but of course, that’s not unusual.

Over the years we’ve come to realize E’s experience with ear issues was not that uncommon in the Loeys-Dietz community…..tubes, recurring infections, cholesteatoma, typanoplasty, hearing loss, etc.  And I have heard story after story of failed ear surgeries and procedures, so the idea of putting him through yet another one after the last one was so challenging (and ultimately unsuccessful) did not seem wise.  I wanted him to see a doctor that understood LDS or at least was willing to learn enough about it to handle E’s issues uniquely.

We’ve been hoping for a number of years to coordinate his appointments at Hopkins so he could see a specialist there that is working with the Loeys-Dietz team and has a research interest in connective tissue disorders.  However, the schedules have not been able to align.  Last fall when E visited the NIH team, they wanted him seen by an ENT sooner rather than later because they discovered a nasal polyp they believed was causing him some complications.

All of these led us to Dr. Eleanor Kiell and Janet Black at Wake Forest/Brenners today.  E’s hearing test indicated no real change from the last hearing test a few years ago.  This is good.  He has a mild to moderate hearing loss that typical affects low range sounds.  The main issue is his perforated eardrum.  There appears to be no issues with the bones of his ears.  This is very good.  Letters sounds such as vowels, m, and n are the more problematic, but it doesn’t seem to cause him a great problem in communication.

Now onto his nose.  Bless his heart.  Dr. Kiell performed a nasal endoscopy.  Basically, she inserted a thin tube that had a camera and a light into his nose where the images were projected onto a screen and recorded.  It is a simple procedure that I got to stay in the room for.  No anesthesia.  No relaxation methods.  Just do it.

This was not comfortable for Eddie, to say the least.  That tube was so far in his nose I could see the light shining into his throat.  Seriously.  No hyperbole here.  But she was able to see the polyp.  She said that it is not completely blocking his nasal passageway.  However, the NIH’s measurements indicate it is causing him some complications including affecting the development of his face and craniofacial features and dental issues.  Therefore, it will need to be treated.  But first we need a CT scan.

Dr. Kiell is going to try to get a copy of the images taken of Eddie at the NIH in the fall to save us from another scan.  However, if we are not able to get these, he will have a CT scan of his sinuses when we return to Dr. Kiell in a month.  She said assuming he has sinus surgery to remove the polyp, it should be quick and easy, relatively speaking.  Additionally, we can consider repairing his eardrum at that time with another tympanoplasty since he’ll already be under anesthesia.

With all that said, I don’t see another tympanoplasty in the future.  That first one was brutal when he was 8 years old.  He said it was worse than all the other surgeries he’s ever had because he was so sick and dizzy afterwards.  And if it were to fail again (which is a real possibility because of LDS), we are just inviting issues with scar tissue in his ear.  Eh…..doesn’t seem like the benefits would outweigh the risks to me.  But the polyp is an issue that will need to be handled.  It’s way back in his nose near the maxillary sinus.  Not exactly thrilled about the idea of him having another procedure and being put under anesthesia again, but this seems quick and easy in comparison to some of the others he’s had.  And we really liked Dr. Kiell so that’s half the battle.  Will update when we return in a month.  In the meantime, waiting on all the records to be sent so we can get Eddie an appointment with a doctor that will be his local cardiologist for between Hopkins visits.  Hoping that won’t be too long because he’s due for another echocardiogram.

Days 40-44 – Valentine Sweet Treat

Just because I’m not writing about them everyday doesn’t mean I’m not sticking to my plan of 365 new experiences this year. All are good things, but not all make good reading.  However, I’m going to zoom through my last few days of new experiences so I can move on to today’s new experience that makes for some delicious sharing.

Day 40 – I started using Rodan and Fields’ Soothe regiment.  My sweet, sweet friend gave it to me for my birthday knowing how badly my skin bothers me….and by bothers I mean more like physically can burn and hurt and sting as opposed to being self-conscious alone about it. Day 41 – I left conditioner in my hair.  I don’t know what the hell happened at age 42 that suddenly left the ends of my hair feeling dry and somedays looking like straw.  However, that hasn’t changed the fact that my roots are still oily.  Grrrr…..as if combination skin isn’t enough, my hair has decided to display multiple personalities.  So I read that leaving in a bit of conditioner to the ends can really help.  I’ve done it twice now and I’m left wondering why I haven’t tried this earlier.  Day 42 – Don’t laugh.  I went to bed with all my laundry put away, my dining table somewhat cleaned off, my bathroom clean, my dishes put away, and my kitchen clean.  Normally, I am lucky to accomplish any one of these things, but all of them????  That’s the stuff of unicorns and fairies.  And I’m pretty sure it’s a first of my adult life.  Mind you, by day 44 of all this had disappeared like a rabbit in a magician’s hat, but I will celebrate victories where I can get them.

Day 43 – I helped my oldest son open a checking account.  This should be interesting.  Day 44 – Again, I hate to be superficial, but…..I got an amazing knit moto jacket in a heather navy and wore it for the first time on this day.  I recently got a shipment from Stitch Fix, and this was in it.  Knit.  Moto.  Jacket.  Navy.  It’s like a cross between badass and café au lait-drinking super mom.  I can’t.

And now day 45.  I could write all about it, but a picture really is worth a 1000 words.  heart pie2

Chocolate strawberry valentine pie.  The easiest thing ever.  I had a heart shaped tart dish I used for this.  It is Valentine’s Day, after all.  I got a box with two refrigerated pie doughs.  I rolled one to make it thin.  I laid one on the bottom of the dish, smashed it against the edge, and cut off much of the excess.  I then sprinkled a mix of dark chocolate chips on the bottom crust.  I only use Ghirardelli dark chocolate chips because of my son’s milk allergies.  It’s the only one I know he can eat with no reaction.  However, milk chocolate would be yummy, too.  In a separate bowl, I quartered fresh strawberries (2 lbs of them!) then added half a cup of sugar, a tbsp. of corn starch and the squeeze of a fresh lime half and mixed gently.  After I spooned the strawberries over the chocolate chips.  Finally, I took the second crust, rolled thin again, and cut out Xs and Os for Valentines.  Then I placed this top crust over the strawberry mixture and sealed the seams.  I brushed the top with a little milk….in our house, that’s soy or almond milk.  Baked at 375 degrees for 30-40 minutes.  I baked for 30 minutes, but it could have used a tiny bit longer.  Here’s the finished product:

heart pie

Day 39 – Keeping Vampires and Germs Away

D is on the road to recovery, but his immune system has taken a hit with this virus.  And I’m, admittedly, paranoid with all the illness we’ve had recently.  I was determined that we were going to eat healthy to help keep the germs away.

I found a recipe online for a crockpot sausage, white bean and spinach soup.  It promised to be easy, and it looked tasty.  It has garlic, spinach, chicken broth….all the makings of a dish to keep viruses at bay.  I used this recipe as the base, but tweaked a bit for our tastes:  https://wishesndishes.com/crock-pot-sausage-spinach-white-bean-soup/ All credit goes to Ashley, writer of the wishesndishes blog.

My tweaks:  I used turkey smoked sausage and omitted the celery and carrots.  Otherwise, I followed as is…..four cloves of garlic and all.  I’ve got to tell you, I smelled garlic all day long.  I like garlic, but I thought the smell was intense in my house.  Not only are we killing germs, we may be killing vampires.

I knew my youngest would give me a fit about this.  If it ain’t chicken nuggets, hot dogs or pizza, he ain’t havin’ it.  It kills me.  Seriously, it hurts my heart to see him turn his nose up at dishes without an open mind to try them.  Pet peeve of mine.  My oldest, however, will try nearly anything.  So to find a way to give everyone something that met their approval, I served the soup with ham sandwiches (ham is on my little man’s approved foods list) and a baked sweet potato.  I had marshmallows, brown sugar, and cinnamon on the table for everyone to top the potatoes as they wished.

Y’all, I don’t say this often….or maybe never at all, but I killed it with dinner tonight.  Check it out.

soup

This was SO good!  Of course, my youngest was in tears before he left the table because I was making him try everything….eh.  Cry me a river.  My oldest had two bowls of soup and told me, “It’s alright,” which in teenager talk is total winning.

So dinner is a winner and I’m doing my part to keep the vampires and the germs away.

Days 37-38: Deliver My Acorns

Days 37-38: Deliver My Acorns

Day 37 – The closest Walmart Neighborhood Market is almost a half hour away from my home.  In fact, I can drive in any direction and be at a Walmart in no more than 40 minutes.  But there is no Walmart in my town.  That doesn’t stop me, however, from taking advantage of their ordering ahead service.  I order and pay online and then drive that half hour to the next county and sit lazily in my parking spot while the poor employee pushes the flatbed of my groceries and loads them into my car.  And you know what?  I don’t feel bad about it, either.

I had ordered my groceries Sunday afternoon and scheduled a Monday afternoon pick up.  The idea is I would get off work and drive over there since my school is halfway between my home and the store.  But then D got sick.  And I wasn’t about to leave him with a 102 degree fever to pick up groceries.  And this is where having children a decade apart is awesome.

I checked with my brother who is in management for Walmart (and used to be the manager of this particular Neighborhood Market) to see if I could send my 16 year old to pick up the groceries.  I was concerned since my name was on the order that they would not release them to him.  Taking my brother’s advice, I called the store to let them know, but yes, they allowed him to pick them up.  And then when he came home, he unloaded all of them and put them away so I could stay with D.  Having a teenager can be challenging at times, but he can also be a total rockstar that helps me out.  And that is the story of the first time I let my oldest go grocery shopping (of sorts) for me.

Day 38 – One of the items I got on this particularly grocery run was acorn squash.  I never made them before but I ran across a super easy recipe that looked totally delish.  I plopped the squash in a bowl and put in the microwave for three minutes.  I removed the dish and squash.  Being careful because it was hot, I cut the acorn squash in half stem to bottom.  I removed the seeds and gunk from the middle….it was much like a pumpkin, as you can imagine…..leaving a bit of a bowl in the center of the half.  Then I rubbed the flesh with olive oil.  I placed each half in foil and laid carefully in a baking dish as it would be easy for it to tip over.  Then I let it bake for 30 minutes.  At the end of 30 minutes I put a generous dollop of butter, a heaping spoonful of brown sugar and a sprinkle of cinnamon in the center hollow where the seeds had been.  I then let it back another 20 minutes.  I served in the foil and put another little sprinkle of brown sugar because…..why not?  It was yummy and easy, just like the recipe promised.  Forgive my lackluster photography skills, but trust me.  It was a winner according to my oldest son.

 

Day 34 -35 – Valentines and Lights Out

Day 34 -35 – Valentines and Lights Out

Playing catch up with my firsts due to all the illnesses in this house.  Day 34 is a first you can do, too!  I heard about it on Facebook and it is quick and easy!  Simply use this link to go to Cincinnati Children’s Hospital:  https://www.cincinnatichildrens.org/

From the homepage you can send a Valentine to a child who is a patient at the hospital.   It’s super easy and simple.  Just enter a little info about yourself and choose one of three designs.  Your valentine will be printed with your first name only and distributed randomly to the patients there since they will be missing all the school parties, dances, and other events for Valentines.  What a cool thing!

Day 35 – Super Bowl Sunday.  My idea of a fun Super Bowl is meeting at a friend’s home or having a few friends over to my place and cooking yummy, fattening foods while enjoying the commercials and half time show.  The football is really an afterthought for me, but I’ll watch it. I just like being comfortable in my home.  But my son wanted to go out to watch the big game.  We had freezing rain earlier in the day and pretty much a monsoon after.  It was crazy foggy, also.  E wanted to drive himself and his friend to the restaurant, but I wasn’t having it.  So I told him if he wanted to go we would all go and I would buy dinner.

It was loud.  Very loud.  You could not hear the televisions at all.  We got there at 5:15 or so.  My six year old got restless pretty early on (unbeknownst to me, he was also getting terribly sick).  My goal was to make it to halftime to watch Justin Timberlake do his thing and then the little one and I would hibernate in the car until E and his friends decided it was time to leave.

The halftime show started and I could not hear a thing.  Again, it was very loud in there. But that was fine.  JT, after all, is quite an entertainer to watch.   And about three minutes into the show….boom….everything goes black in the restaurant.  Everything.  Cell phones start coming out and blinding me no matter which way I turned.  D was freaking out.

With the cell phones and a few emergency lights in the place, it’s not as if it was pitch black.  However, it was pretty freaky to hear all those voices and cell phone flashlights in your face making shadows of everyone.  The waitresses began going table to table to apologize to customers.  They were trying to determine if power was out in the whole block and strip mall or just them.  After several minutes, the power returned but because all of the tvs were set to with Direct TV, it took awhile to get everything back on line.  I missed the rest of the show….no Prince tribute, no Sexy Back, no selfie with Can’t Stop the Feeling, none of it.  Thank goodness for YouTube where everything lives on.

Feb 6 – When Collapse Leads to Contentment

Feb 6 – When Collapse Leads to Contentment

My thoughts are a bit all over the place this evening.  My youngest, D, is sick….again.  I have not worked an entire five day work week since before Christmas break.  And it’s not looking good that I’m going to work at all this week based on the rattling cough I hear.

I’ve always had a tendency toward anxiety.  After Loeys-Dietz and the world of cardiac surgeries become less television drama and more real life trauma, I developed full blown anxiety disorder.  In the years since, I’ve learned how to manage it and it has been controlled well.  However, there’s one time for certain when it will rear its ugly head…..when it comes to my kids’ health.  Most of the time, it’s when E has cardiology appointments, misses medication, or feels poorly.  I’ve walked on pins and needles as I’ve watched the news be flooded with stories of people dying from the flu…..healthy people with no underlying conditions.  The idea of E getting this severe flu just six months after his heart surgery terrifies me.  It’s a struggle to not allow the anxiety to grab hold to this.

But E is not the one that has kept me up the last two nights.  I’ve had my little one, D, sleep in the bed beside me.  His noisy breathing and rattling cough have got me all nerved out.  And he’s still on his antibiotic for strep, but I  can’t seem to get it in him twice per day because he’s falling asleep with this virus he has.  I don’t really think it’s the flu.  I think it’s croup…..the symptoms seem to fall in line with that better.  However, that doesn’t stop me from having all the scary mental movies of the news stories of flu deaths.  So my New Years resolution of something new daily has fallen by the wayside for now.  It’s safe to say that making it a whole year with a daily new adventure has collapsed…by the beginning of February.  But I’m not worried too much.  I can easily do a couple of new things every day later on when things are back to normal and everyone is well again.  There shouldn’t be a problem catching up.

However, I also have to remember WHY I’m doing this.  Searching or planning for something new on a daily basis helps to keep my anxiety at bay.  It also brings excitement and joy to life as I push my boundaries into areas that are often uncomfortable and even downright scary.  And on a daily basis it helps me to see things with a different perspective.  Do it long enough and you see novelty and uniqueness and beauty among the mundane and routine.  Ways to enhance the old and make it feel new again.  And that I’m able to do even when the resolution has collapsed.  Even when I’m listening to every barking cough.  Even when all I’ve accomplished is washing the sheets to rid them of their germs, force feeding Tylenol to bring down a fever, and letting my little one watch 100s of YouTube videos in a day.  Today I accomplished it.

D did okay this morning.  I even got a few smiles and thumbs up.  But then in the afternoon, the fever spiked again and he climbed into my bed to sleep a little while.  He asked me to sit with him and hug him while he laid.  So I did.  I focused on his breathing and how hot his skin was, but I also focused on the quiet hum of the humidifier…..the way he moved his fingers back and forth on my elbow, and the smell of his hair.  I focused on the comforting way he laid his head on my chest and closed his eyes and dozed off for a few minutes.  I thought of how hard it is to get him to be this still and then I realized how hard it is for me to be this still.  And I just enjoyed the moment.  Of course, I don’t enjoy him being sick, but I know it won’t be much longer before I can’t hold him like this because he’ll be too big.  And I just felt contentment rather than anxiety.

Day 33 – These Pretzels Are Making Me Thirsty

On day 33, I went to a new place.  I visited a really cool spot in Greensboro called World of Beer.  By the look of the crowd, plenty of other people know about this cool spot, also.  The place has space for live music, it has booths and tables, and there’s a quaint spot with seating in front of a large screen tv that sometimes has video games going on it.  Additionally, there’s a ping pong table, foosball, and a myriad of other fun entertainment.  Outside there’s a huge patio that is frequented by dogs and their owners on Sundays during the restaurant’s “Yappy Hour”.  As you would expect at a place with its name, there’s also a huge bar with more drink choices than you could imagine.  And if that wasn’t enough, there’s a full menu of delicious food options.

I was overwhelmed.  It’s almost sensory overload….especially considering it was packed.  The pretzels came with glowing recommendations so thankfully I didn’t have to get even more overwhelmed with the menu.  I entered that place knowing it was what I was going to order.

To call these pretzels are really a disservice.  These are anomalies.  They should not be classified by the same word as those crunchy twists I get in a bag at the store or the doughy knots I can order with cinnamon sugar at the mall.  These are in a league of their own.

pretzel

These things are huge….so large, in fact, they are served on banana hooks.  They also come with mustard and beer cheese so you get your choice for dipping.  They are warm.  They are soft.  They have just the right amount of salt and no unnecessary greasiness.  And the picture doesn’t adequately capture the thickness of the pretzel.  It is large enough for sharing, but you’re not going to want to do that.

Every time I order a pretzel, I always hear the line from the classic Seinfeld episode in my mind, “These pretzels are making me thirsty.”  Of course, at a place called World of Beer, they’ve got you covered.  There were countless options on tap.  They also had tons of bottled options that were divided and displayed according to the state where they were brewed.

I definitely want to go back to this place.  There were tons of food and drink specials displayed.  The food looked delicious, but I’m not sure you’ll get me to try anything new.  I’d have a hard time choosing something other than the deliciousness of that pretzel.

 

Day 32 – I Woke Up Like This

I woke up like this — that’s the best name for a face mask ever, right?  I mean, a name like that will either have you scared or intrigued.  I choose intrigued.  So, I tried it.

Woke up like this

I received this product as a gift.  Thankfully, it has a long shelf life.  It’s not as if I didn’t want to use it, but the idea of having the extra 15-20 minutes to just sit and let a mask work its magic is not reality for me most days.  So it got put in my cosmetics drawer where I ran across it a couple of nights ago and remembered how I wanted to use it.

This product is by Biobelle and boasts its all natural status.  The mask itself is super soft and plush feeling on the skin.  It is biodegradable and drenched in vitamin goodness.  It lists vitamin C and rose oil as key ingredients.  It was quite cool on the skin.  As one who has rosacea, that is an added bonus because so many products irritate and burn my skin.  It did begin to make my skin feel tight, but not in a drying way.

The company argues that the product reduces blemishes and dark spots,   restores your skin’s glow, and exfoliates.  I don’t know about all that, but my skin definitely felt great after using the mask.

I unfolded the actual mask (which was dripping with the liquid solution), placed it on my face and pushed it down to make it adhere to my skin, and then waited.  After 20 minutes, I removed it, rinsed my face, and dried it off. Voila.

mask

Of course, the real test of how effective it is will be determine tomorrow.  I’m hoping when I wake up the youthful glow will be there.  In the meantime, everyone seems to enjoy ridiculous pictures of me such as the poodle hair so enjoy this one!

Day 31 – Poodle, Anyone?

I have straight hair.  Always have.  Always will.   I’ve always imagined  what life would be like with the big bouncy curls of soap opera stars.

I went through the whole 80s perm fad.  I’ve crimped my hair, spiral curled it, even had a thing called a z-curling iron at one point in middle school that made zig zags in your hair.  Several times my mom would roll my hair in curlers that I would sleep in.  The next morning it never turned into the big bouncy soap opera curls  I imagined, though.  It’s been years since I slept in rollers so I decided that if two decades have passed, that totally counts as a first.

My results were less soap opera and more little orphan Annie.

curly hairI think you can tell by my expression what I think of this look.  That was a hot mess.  A poodle dropped on my head would have less knots, less frizz, and more style.   But I had to make it work.  I did not have time for washing my hair again after trying to do something with that mop.

In what may be considered an homage to 80s Dynasty hairstyles, I pinned it all back to make a crown….or knot of curls.  Less poodle, more style.  The day….and my hair is saved.

curly hair2