Time Hop

Today, my Time Hop app reminded me of a complaint I made on Facebook last year on this day about Grumpy Kelsey.

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That got me to thinking about a year ago, about Kelsey’s current state, and about 2015 in general…

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If I were to look back through Christmas cards from years past, I would find Dave singing a very familiar tune on his notes to me.  Dave is an EXCELLENT card writer, by the way.  Seriously, every time I go to write a Happy Anniversary note or a Merry Christmas, Husband note, I cringe knowing how witty and heartfelt Dave’s message will be…all the while not knowing what to write myself…only to end up saying something like “I love you so much!  Thanks for being you!”  Anyway, I digress.

Like I was saying, the last 6-7 years of Dave’s sweet Christmas cards say something like, “20__” was a tough year…”20__” will be our best year yet!!  He’s more eloquent, but you get the gist.  All of our child-rearing years have been SO FREAKING HARD and we keep waiting for the next year to get better…easier…healthier.

Time Hop and Facebook’s similar new feature that show you exactly what you said, posted and took a picture of last year (or 2 or 3 or 4 years ago) can be great, terrible, embarrassing, humbling, adorable, irritating, and wonderful all in one.  Today it brought me peace.

Kelsey still has a LONG WAY TO GO (sorry to shout but it’s true), but her mood, contentment, and happiness have improved dramatically from this time last year.  I told a dear friend last year that Kelsey wasn’t living.  She was only surviving.  And that was totally true.  She would eat.  She would sleep.  She didn’t mind a drive in the car or a book or two, but that’s about it.  She didn’t play.  She didn’t find joy in much.  Laughs were hard to come by.  Social situations sucked.  People always asked “is she tired?  What’s Wrong?  Is she having a bad day? Toddlers, right?!” Nope.  That’s just her.

Well a year later she is laughing and playing her butt off!  She has favorite toys…favorite people…and her own agenda, but she finds joy in each day and that makes me so happy. And it also makes life So.  Much. Easier.

And for that I am thankful.  But, I wouldn’t say that 2015 was our best year yet.  I so hope 2016 kicks 2015’s butt!  (Sorry for using the ‘b’ word twice in one post.  That’s it.  I promise).

In the spring, we learned that Kelsey was having significant seizure activity.  She is medicated on a daily basis for it and it will be something that she will very well live with for the rest of her life.  This awful diagnosis was a major turning point for her mood and contentment.  So while I can’t say, by any means, that I’m happy she has epilepsy, I am happy that it was a likely reason she was in a development hiatus for about 6-9 months.  And that the medication that stopped her seizures helped her to play, laugh and learn.

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This year was also difficult because my mom had some major medical challenges occur in the summer  That’s all I’ll say about that, but…well, it sucked.  She is on the mend but still recovering.

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That brings us to the fall.  Ben has had a really tough second grade year so far.  He got a cold during the second week of school.  Add on two more colds and some first-timer allergies and and he hasn’t been able to breathe out of his nose since Labor Day.  Oh, and in between that he broke his foot and was in a walking boot or immobile or limping for the better part of two months.  😦  Not great for a kid who has to work so hard to function like the general population.

After Thanksgiving, we also had to say goodbye to a beloved family member…our Chocolate Lab, Ray Lewis.  He was almost 11 and suffered a stroke (we think) and it was time. We miss him terribly.

All of that being said, we did have a lot of joy this year.  We became more active in our church, traveled a TON, won a highly esteemed designation (and prize-trip) at work, celebrated 10 years of wedded bliss, and were able to eat out as a family and not want to pull our hair out.

We lost teeth, avoided MAJOR surgery, kicked butt (DAMN!) in the school talent show, played golf, and visited the White House.

We learned how to walk with a walker!  We learned how to ride a bike!  We started a blog!

2015 was very hard.  But it was also very good.  I know every year is hard and good in one way or another.  But I reeeeeeeally hope that 2016 is a healthy year for my family.  Do you hear that Santa?  That’s all I want for Christmas and in 2016.  Health and Happiness.  (And maybe a little walking and talking! But I don’t want to be too greedy).

So from my family to yours, may this holiday season be merry, bright and filled with light! And here’s to a year of all things wonderful in 2016.

Thanks for reading, friends.  See ‘ya in the New Year!

Menkes Moms

This weekend, I have the awesome opportunity to travel to NYC with some fellow Menkes Moms (MMs).  These ladies and I have become very close over the last few years, and it’s all (well mostly) due to Menkes.

Besides the killer plans we’ve got in store, I wanted to share a little about this fabulous bunch.

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That beauty on the far left is our fearless leader…and that should not be taken as a cliche’.  Jamie Eckman is the president of The Menkes Foundation.  She’s fearless. And she’s badass.  Jamie’s been spreading love, hope and awareness about this horrible disease since the passing of her beloved son Wesley, whom she calls her soulmate.

Jamie and her husband Drew started the foundation that has done so much for so many boys and their families.  I found Jamie through their website when Ben was about two.  Until then we avoided Menkes on the Internet like the plague.  But when Ben was stable, I started searching and found this beautiful lady and her foundation.  Dave and I hosted four golf tournaments to raise money for their foundation.  And over the years we have become very close.  It just so happens that Jamie and Drew live in Maryland too.

Next to Jamie in the picture is Heidi Berlin.  Now this you’re not going to believe.  So get ready.  Heidi and I were friends BEFORE Menkes.  Before kids.  Before marriage.  Before I even knew Dave…I knew Heidi…who married Dan…who went to high school with Dave.  Did you get all that?  My Dave knew her Dan from high school, and I knew her Dan’s friends in college.  So I knew Heidi.  Keeping up?  After post-college days of parties and football games, we each got married and had blonde haired, blue-eyed handsome devils-of-sons (one month apart, I might add).

Ben and Adam were buds

If you know my story, you know that we were warned about a Menkes diagnosis when Ben was three days old.  It wasn’t until Heidi’s Adam was one year (and one day) old when Menkes began to rule their world.  Heidi and I were in close contact after that and I’m so thankful for her friendship.  Heidi, like Jamie, lost her precious Adam in January of 2014 at almost six and a half years old. All of us could learn a LOT from Heidi.  She likes to say, when she gets the dreaded, “You’re so strong!” that “LOVE is Strong.”  I love that.  And I love Heidi.  Heidi and Dan also live in Maryland.

The last lady I’m so thankful to know in that first picture above is Allison Delano.  Allison does NOT live in Maryland.  🙂  She lives in Atlanta with her husband Bryan and their two kids: John and Reese.  John, as you probably guessed, has Menkes, as well.  Apparently (and I’m fuzzy on the details), Allison did a fair amount of stalking of Ben and us during their early days of Menkes.  I’m so very thankful for Facebook as it brought Allison (and many other MMs to me).  Allison is HILARIOUS and sweet and such a good friend to have for such terrible reasons.  All of us Menkes Moms are so thankful for each other, but we really wish we’d never met because that would mean we would never have had to look for others suffering like us.

During a summer visit of these three fabulous ladies and I, we decided we needed a girl’s trip to laugh and love and live in honor of boys.  We decided November, Menkes Awareness Month, would be the perfect time to visit New York City.  The details came together quite quickly and all-of-sudden, the trip is here!  And I can’t wait to share our plans with you!

This Friday, the other two MD gals and I will take the train to meet Mrs. ATL in NYC.  Our first item on the agenda (after some lunch and cocktails, of course) is to see The Tonight Show and laugh with Mr. Jimmy Fallon, himself!!!  We are SO EXCITED!!  Next up after that is to be a part of the Today Show crowd and spread a little Menkes LOVE! Hopefully you’ll be able to see us, if you care to, in our Menkes Blue and Copper shirts and signs!  We’re also going to do a little shopping, a little eating and drinking, and a LOT of laughing.  Probably a fair amount of tears, too, as we come together to share a bond that is so special and unique and full of emotion.

So set your DVRs, people: Four Menkes Moms Take On NEW YORK CITY!  This weekend.  Brought to you by NBC and The Menkes Foundation.  😉 Hehe.

Copper Love

In case you hadn’t heard, November is Menkes Awareness Month. Copper Luck and Hope has been overly focused on Kelsey Ann, as her challenges have been ruling our family for her two and-a-half-years. November also happens to be Epilepsy Awareness Month (coinkinkydink). September (when Ben, Dave and I were born) is Hydrocephalus Awareness Month. And May (when Kelsey was born) is Stroke Awareness Month. Since her ailments are represented throughout the year, we’ve managed to pay homage without even trying! Go us!

Okay back to Ben. At this point “Ben’s Story” is old news. But in case you haven’t heard, here you go. It’s a good one full of drama and intrigue and a little bit of miracle, so it’s worth rereading. 😉

His written story is a bit outdated as I started this blog and neglected the updates to that first chapter. So I thought I’d spread awareness by discussing his current struggles and accomplishments. Let’s start with the good, shall we?

Ben is in all regular education classes in the second grade. Math is his stronger subject and the rumor is he scored 100% on his latest math assessment. He also managed a 97% on his science test on insects! Ben has many buddies in school, and since he’s been there since he was just 3 years old, he is well known and liked by many.

Ben is also a Cub Scout. He loves all the adventures scouting provides. He just recently learned to ride a bike! Balance, endurance and coordination are among the areas he has challenges in, so this is a big feat for him! Even with training wheels.

Ben loves animals, toys of every kind and has an incredible imagination that I hope he never loses.

Just like his family, he’s a great eater, never stops talking and is affectionate and very sweet.  “He’s always smiling” is a usual compliment/comment we hear. And it’s true. He takes great joy out of life!  Which is a characteristic many strive for…and which we definitely take for granted but are still so thankful for…especially after his sister came along and wasn’t so perpetually happy.

Ben’s latest struggles center around being 8! He’s stubborn, insistent, and has been driving us bonkers for two months!  He’s waivering between wanting to be so independent (as any 8 year old would be) but being so inherently needy because of his challenges from Menkes.  That’s right.  You read it right.  His biggest struggles have little to do with his disease.

For awhile now, I’ve really struggled with where we fit in.  We don’t “fit” with all our friends (GOD BLESS THEM) and their kids who are typically developing kids.  We don’t really “fit” in with the Menkes crowd either.  There are a few (4!?) kids who are his age, with his level of “success” (with the copper treatment he received).  But all of them live elsewhere and individually, like Ben, have their own hurdles to jump.

So we do our own thing.  It’s always been our way.  Learn Menkes from Ben…not from others.  It’s been the same with Kelsey.  I’m not a mom who researches everything and becomes an expert in what ails my children.  Because, quite frankly, a lot of that scares me.  So, I lean on my optimist of a husband, my miracle of a son, and our “village” who raise me up and give us what we need.  And, as I age and grow, I’m learning to trust the plan that has been given to me.  That what we have is right and will work out.  Whether I worry and research myself silly or not.  I doubt it, and despair upon it, about every other day, but that’s the gist…and what I strive for.

But I digress.  Ben’s “struggles.”  I hesitate to share his deep down, real Menkes struggles now as he is in school.  And parents of his buddies read this.  And we’re at the age where people notice, realize, and wonder what’s up with him.  And the bullies are close.  I don’t want to make anything worse than it will already be.  I only want to help and foster an understanding of what he’s going through, by writing this blog.  And maybe, spread awareness, so that others may read this…tell someone…and heal or learn from it.  And through all that, I heal…and can march on.

Ben still struggles with bladder complications as a result of the excess copper he had in his system from participating in the study at NIH for his first three years.  We are AMAZED at where he is as compared to 2 years ago, but it’s still a daily battle.  I’ll leave it at that.

He fatigues very easily as compared to typical eight year olds.  He doesn’t sleep soundly and tires from what comes easily to all of you reading this.  As the developmental pediatrician nailed immediately, when we saw him 7 years ago, Ben’s biggest battle in life will be fatigue.  His endurance for everything is lower, which makes daily tasks harder.  Reading, writing, dressing, bathing, walking, running, learning, eating, sleeping…it’s all harder.

But despite all the odds…he’s doing it.  Hell (pardon my French); he’s KILLING it.  Everything he is doing, he is re-writing the textbooks on Menkes.  And he wasn’t supposed to.  If you look at his genetic deletion.  If you look closely (doctors tell us), he SHOULDN’T be a success story.  But he is.  He’s a miracle.  Watch out world.  Here comes Ben.

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A Hopeful Halloween

I love holidays.  I love dressing up.  I love candy.  I love Halloween!

And I’m pretty excited about this one.

I won’t bore you with all the pictures from year-to-year, but we’ll go back a couple years for kicks.  On Kelsey’s first Halloween, she had just had her fourth brain surgery.  So I decided that a hat or wig would be perfect for Halloween…she was a Cabbage Patch Kid.  I was obsessed with these dolls for a good part of my childhood.  So it was perfect that I had my very own baby “doll” now.  Oh sure I had Ben, but the girl…I had to do it!

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I mean, could you die?

Ben was equally adorable that year dressed as an astronaut.

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Last year Kelsey had just started wearing new glasses and her mood was rocky at best, so this is what most of the Halloween looked like…

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Ben, Kelsey and their cousin Penguin

As for this Halloween, Ben has been through a couple costumes but landed on an adorable, um, I mean terrifying ninja.  As a teacher in another life, all of my 3rd and 4th grade boys were always dressed from head-to-toe in black.  They called themselves Darth Vader, the guy from Scream, and ninjas but to me they all looked the same.  Well…we’ve arrived.  Ben is dressed all in black, but as sad as it may make him, he’s not the least bit scary.

Kelsey is dressing as Minnie Mouse.  Her current obsession is Elmo, as described in my last post.  It would make sense to dress her as Elmo but that would mean as much to her as dressing her as Minnie.  Absolutely nothing.  If Ben dressed as Elmo, that would be a different story, and Kelsey probably would have loved that, but I knew that would never happen.

Ben was Mickey Mouse when he was two, so we decided at two-and-a-half, Kelsey had to be Minnie.

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I can’t stand the cuteness!!!

Now, the kids are as adorable as ever this year, but that’s not why I’m excited.  I’m excited because I’m hoping Kelsey may be able to actually trick-or-treat!  She has been speeding around the house using her gait-trainer and it is so exciting to see!!

When Ben dressed as Mickey, he too, was just learning to walk but he was able to trick-or-treat by just holding Daddy’s hand.  After about four houses, we were all done and that was perfect.  Now that we have Kelsey, I can’t help but compare the kids.  Ben has this MAJOR, horrible disease and he was walking before Kelsey.  He was talking before her too.  And that in itself is so scary.

On one hand, I often think that if he can do all he does, than anyone can!  His sister’s disease(s) is (are) much more common and not fatal.  Neither of their afflictions have cures but they do have treatments.  But by comparison, she’s behind (her brother and her peers) in so many ways.  Now.  She has a whole lotta reasons to be behind.  She was having seizures, that for a large chunk of 2015, were untreated.  She had four brain surgeries and an eye surgery.  She’s had a lot more traumas to overcome.  Ben had a lot riding against him from the start, but luckily no seizures, surgeries, or otherwise. But still…

Onto happy thoughts.  A month ago, I would not have believed this was a possibility!  But all-of-a-sudden…something clicked!  We still have a long way to go, but the fact that she WANTS to walk and is moving is so exciting!!  She is so proud of herself!  Walking makes her happy!

So stay tuned…I’ll let you know how it goes.

Have a Happy and Hopeful Halloween!!!

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P.S. If you want to read about our scariest Halloween EVER, check out Ben’s Story.

New Therapy

…trying again after computer problems yesterday…

We have added a new type of therapy to our repertoire.  Elmo therapy.  🙂

IMG_9309Elmo therapy was a favorite of ours with Ben when he was little too.  It helped him with the dreaded Tummy Time.  ry%3D480

ry%3D400But it took Kelsey much longer than Ben to love Elmo and TV, in general.  But I can say for sure, without fear of jinxing it…Kelsey loves TV!  Woohoo!!  Now the Pediatrician and Better Mom Police might look down upon our celebration of TV, but I’d tell them to switch places with us for the last 18 months and see if they wouldn’t be thrilled to see the furry monster in full rotation!

Recently Kelsey also started to enjoy using her “gait trainer” aka her walker in the picture above.  One day her physical therapist was over and fiddling with it to slow it down, as Kelsey is currently Speed Racer with it which creates incredible poor-form in her walking gait.  I put Elmo on to help distract her while her PT was working and lo and behold, Elmo therapy was born.  Kelsey will stand for long periods of time, with her gait trainer, while Elmo is entertaining her.  Not only does this help her walking development (if she’s actually moving) but it also helps with her weight bearing practice…which is great.  Since the therapy has started we’ve seen her become more fond of her gait trainer and more fond of walking in any way…be it holding hands, the walker or a push-toy.

Now she has a LONG way to go.  Watching her walk is a bit painful the way her feet are turned in.  But it’s progress. And I’m quite thankful for Elmo for all he does, both in therapy and out…be it while cooking dinner, grocery shopping or after a long day at the pumpkin patch.  And while I do feel a bit guilty for all the TV consumption lately…I’m not stopping the contentment train anytime soon.  So sue me…

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No more Gym Guilt

Today I had a great time at a Zumba at the gym. I don’t make it often since Kelsey has some type therapy most mornings, but since PT wasn’t until 11 today, I decided we could fit it in. She’s been doing great at the church nursery so I thought she’d be okay for an hour at the Kid’s Club.

We haven’t had the best luck at the Kid’s Club in the past. Since Kelsey was about 6 months I’ve tried taking her to the gym like I did when Ben was little.  The last four or five times while in a group class, I’d hear my dreaded name called over the loud speaker to report to the Kids Club. Aka “your kid is causing problems…come fix it.” Now some of these calls were during some really difficult periods where Kelsey would pretty much whine from sun up to sun down. But I was still bothered to be interrupted–sometimes twice in an hour class–to come get her because she was whining/unhappy.

At the beginning of the summer, I took both kids to the club. And I was called out, again, during a class to come get Kelsey because she was unhappy. While it doesn’t surprise me that she’s unhappy and irritating the caregivers (Been there! Done that! Everyday!), it does surprise me that they have no problem calling me out to tell me. Because it seems like every time I drop her off, some other kiddo is balling their eyes out for their Mommy too! Right?! I mean isn’t it pretty universal that many kids don’t love being left at a drop-off nursery such as this? But as a teacher and a mom, you figure it out, right? Pick them up, try some different toys, and if it doesn’t make the kid happy, well…listen to them whine for 30 more minutes and then send them on their merry way when their mom comes to get them.  And, if you’re a good teacher and an even better mom, you don’t always have to tell the parents how awful the kid was.  Gosh, I would sure be in trouble if I told the truth about all the cherubs I taught!  No one’s hurt?  No one needs to know!

Well, not my gym, apparently.  So that last time I went to the gym, ah hem, at the beginning of the summer, I told the staff that this was Kelsey.  This is how she is.  They’ve been told about her medical problems.  And that her behavior suffers because of all these diagnoses.  The one staff member seemed to understand that I just needed an hour to work out, and if they could just deal with Kelsey for that time, I’d be grateful for the break.

Today, that same staff member and the manager of the Kid’s Club who has worked there since Ben was little, were there to happily greet me.  They didn’t address or approach Kelsey, but that was okay.  Like any other day, another child was tantruming because he was in time-out for throwing toys.  The staff boasted about how happy they were to find a way to solve this other child’s “problem.”  Their solution was to sit with their back to the child while he screamed quite loudly in time-out.  Great!  Sounded good to me.  Didn’t bother me one bit.  They were handling a child.  Good stuff.  I signed Kelsey in, put her down (whine free, I might add) at a familiar toy, said good-bye and told the staff I’d be back at 10:30 (an hour later) after my class.

Throughout the class, I was nervously looking at the door and listening for a gym announcement or staff member who was looking for me to rescue them from my child…but it didn’t come!  I was thrilled!  I was already plotting the next class I could come to…on Monday, maybe?  After the class, I grabbed my phone and texted Dave that it had been a success!  A full gym class without a complaint about Kelsey.  Annnd then, sure enough, at 10:32 maybe, as I was walking to the Kid’s Club, I heard it, “Kim Larrick please report to the Kid’s Club!”  Seriously!?!?! Grrrrrrrr….

So I went down to collect Kelsey and to hear the report.  Did she throw toys like that other boy?  Did she hurt someone?  Did she poop (another reason a parent will be called on the PA)?  Did she bite like she has been known to do every now and then?  With my armor up, my heart hurting and my head hanging, I asked what she had done this time. “Oh nothing.  She’s just done.”  I shared with them that I had been so excited to tell my husband that I actually hadn’t gotten the call, when sure enough, mid text to him after class, I was summoned.  I told them that we wouldn’t be coming anymore since it never seems to work out and that Kelsey was so difficult to manage.  They said, “Oh, well, we let you finish your class but now she’s done.”

Seriously?!?  You couldn’t wait 5 minutes for me to grab my keys, a drink of water and a class schedule before notifying me that my two year old was ready to leave?  I didn’t even go to the bathroom because I didn’t want to ruin a good thing!

I don’t get it.  There was no real explanation of why she was so bad that I needed to be called (again!).  Just that she was “really tired and was done.” Oh and that she was trying to get out of the gate when another child got to leave and she didn’t like it when the manager tried to stop her from getting out.  Ah, ha.  Ok.  Yeah, still don’t understand.

Boo.  Feeling sad for myself and for her.  Everywhere I go people boast about Ben and his happiness, sweetness and love-ability.  Even at the beginning of Zumba, the instructor couldn’t remember my name but knew my son’s name from 4 years ago.  Amazing.  But with Sweet Kelsey (that only a select few know), we were asked to leave (early) over and over again.  So we did.  I went upstairs, signed a termination of membership, and left the gym for good.  It’s just not worth the struggle and having to hear from someone else that we come in contact with that she’s difficult and hard to handle.  I already know that.  That’s why I go to the gym…for a little mental break.

On the bright side, I will no longer have the I-Haven’t-Been-to-the-Gym-Guilt!  I’ve got 99 problems and you ain’t one of them!

No surgery!

I need to update those non-Facebookers of the world on Kelsey’s hip surgery.  There isn’t gonna be one!  Phew!!

Last Thursday, we went to see a pediatric orthopedist who specializes in kids with neurological disorders, such as Kelsey.  After looking at her x-rays, he does NOT think Kelsey needs surgery to fix her hips that are out of proper alignment.  He isn’t overly concerned and thinks time and weight-bearing exercises are what Kelsey needs.  He also thinks that she’s not a good candidate for AFOs as she has a nice arch in her foot.

We were so relieved to hear the invasive surgery with a very restrictive recovery is no longer in Kelsey’s (immediate) future.  It doesn’t mean she will never need surgery, but it’s not the answer now, and for that we are relieved.

Until then…LOTS of therapy, time, practice and patience are in order.

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Hard at work at her first of three therapy appointments this week

If it ain’t one thing, it’s another

In my last post, I mentioned a number of doctors’ appointments. I glossed over what came to be the most significant appointment we had.  To catch up, first we went to see Kelsey’s neurologist.  That visit was quick and easy.  Her doctor (and we) are very happy with the fact that Kelsey’s seizures are under control with medicine.  We anticipate her being on the medicine for some time but we will reevaluate that when the time is right. Good news!

The next day we went back to Johns Hopkins to see Kelsey’s neurosurgeon.  This was another uneventful visit.  We aren’t learning much from this doctor lately, which is a good thing.  Her hydrocephalus is under control as well, both through the functioning of the shunt that she has to rid her brain of excess fluid but also, since the shunt is “dialed up” so high (which means little fluid is flowing through) her brain has learned to adapt and accommodate and it’s functioning even without much help from the shunt. (I think that was most definitely a run-on sentence. Forgive me). So…Great news!

Then after a weekend break of appointments, we went to Kennedy Krieger Institute to meet with a developmental pediatrician for Kelsey.  This appointment wasn’t as “great” or “good” or even “fine.”  It sucked.  She didn’t want to be there (for two hours) like most toddlers, nor did we.  The doctor didn’t give us much hope or much help.  She gave us depressing developmental percentages that we already knew but without hearing them calculated in such a way.  She said that Kelsey lost a lot of developmental time (5 months) during her period of seizures (Dec ’14-May ’15).  Not news to us.  And she said we would basically have to wait and see what happens.  She said we were doing everything we should be (therapy, therapy, therapy) but that we should also focus on extra speech therapy to breakthrough the communication barrier.  So we left feeling defeated.  Again.

Then as we started to shake that appointment off and decided that the doctor didn’t tell us anything we didn’t know…we went to Kelsey’s (and Ben’s!) orthopedist two days later.  This doctor prescribed AFOs (ankle-foot orthosis) about 9 months ago.  They didn’t work.  Then we tried a different design.  They didn’t work either.  In the spring, the orthopedist told us to just wait and see how she developed without any sort of brace.  So we did…and came back 4 months later for a check up.  Last week, an xray was done and while I was expecting some sort of brace to be suggested, instead the doctor thinks surgery is now the answer.  The orthopedist saw that Kelsey’s hips are out of correct socket-placement.  She thinks that surgery is the best option to prevent her hips from becoming dislocated.  She thinks this will also give her a better chance of walking.

So another surgery. Or 2…or 4…hear me out. The surgeon will cut both femurs, rotate her hips into alignment, and cast her from the waist down for about a month.  Then, at some point after that, another operation will be done to remove the pins that the surgeon puts in during the first operation.

Invasive surgery (again).  A half-body cast for 4 weeks.  Right now, that’s where we are for the moment.  This week we will get a second opinion.  And then, I guess, we will schedule the surgery.

See why we waited until the end of the summer for all these appointments?!  I am dreading the surgery…depressed…jealous of healthy families…and SO DAMN TIRED of it all….it’s ALWAYS something.  Dave is stronger…more optimistic…happy there’s a way to “fix” a problem.  I’m not there yet.  Hopefully the second opinion on Thursday will help to sort out the many questions we have. 

Until then, while out for some retail therapy the next day, I did find this perfect sign for Kelsey’s room at Home Goods…

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I sure hope so…

A Hopkins Trifecta

Today we met with Kelsey’s neurologist.  Tomorrow we go right back to Hopkins to see her neurosurgeon.  And Monday we head to Kennedy Krieger Institute to meet with a developmental pediatrician for the first time.  A Hopkins trifecta.  We scheduled it all this way kind-of on purpose.  We didn’t want to think about anything to do with these appointments or what may come of them during the beginning of summer, around our tenth anniversary, or during any of our vacations this summer.  So we pushed it all…including a follow up with our orthopedist for both kids next week…until August.  And lo-and-behold, August arrived.  Boo.

Today’s three month follow up with the neurosurgeon went well.  It’s hard to see when you’re living day-to-day, and there are still so many obstacles, challenges and developments that Kelsey has yet to make, BUT she has come a long way since May.  She is exploring more, engaging more, and playing more.  And most importantly, her seizures are G.O.N.E.  When we went for the first time in April, our doctor said that epilepsy was very common (1 in 26!!!) and very curable…but finding the cure was the hard part.  We attempted to knock out the spasms with a high dose of prednisone, which ultimately didn’t work.  Then we tried Topamax…and it worked!  After one, very small dose on April 25, 2014 (ironically two years to the day since the posthemmohagic hydrocephalus…aka water-on-the-brain caused by a stroke in utero…was detected) we never saw another seizure. She takes Topamax twice a day, and after a little cherry flavoring added by our so-nice pharmacist, she takes it very willingly.

Visiting the White House, and the last day a seizure was seen
Visiting the White House, and the last day a seizure was seen

Dr. Kelley was pleased with Kelsey’s development in the last three months, how the Topamax was working for her, and gave us some good information for what to look for in the future regarding seizure activity, growth and development.  Not surprisingly when she asked how Kelsey was doing, I went into a too-long explanation of her moodiness, high-maintenance ways and general difficult nature.  I also focused on the new play and gross-motor skills she’s gained.  The doctor smiled, nodded and took copious notes.  And then she asked in a very quiet and calm way, “How about the seizures?”  HA!  Right, that’s why we are here.  Oh yeah!  They’re gone.  Not a one since April!  Guess that’s what you meant, huh, doc?!?  A bit more important.  LOL! OOPS!  Priorities.

Tomorrow, we will go to Kelsey’s six month check up with her neurosurgeon who has operated on her four out of the five times she’s had surgery.  We are really fond of Dr. Ahn and don’t expect any surprises tomorrow. Nor are we nervous about it…it’s more of a drudgery of driving to-and-from East Baltimore again and being at the hospital.  We are curious about the correlation between hydrocephalus and epilepsy as it came as a surprise to us in April, but I’m not sure it should have.  I don’t think it’s all that uncommon to have seizure activity after the trauma that Kelsey’s brain has experienced.  Seems realistic right?  Should it have been mentioned as a possibility?  Or reacted to more when we saw (and reported!) what were her first spasms in late December? We’ll see.

On Monday, we will visit with a developmental pediatrician at Kennedy Krieger Institute.  Did you know it’s not all that easy to find a developmental pediatrician?  KKI is where you go in the Baltimore area.  I have an opinion, especially as an educator and special needs parent, and I didn’t think KKI was a place I ever wanted to be with my own kids.  We shall see. We definitely need some guidance from someone who can take all that Kelsey has experienced, evaluate her currently, and give us a good plan for the future.  Right now all of her doctors and therapists are telling us that she’s at a 10 month old level, developmentally.  We, begrudgingly, agree with this.  She’s crawling, cruising, pulling to stand, climbing stairs, drinking from an open cup (in the bathtub, at least!), turning pages in a book and babbling (sometimes).  She has not uttered a word, doesn’t point, doesn’t (consistently) wave, and only follows directions about 25-50% of the time (although I’m not sure that’s that uncommon for a 27 month old!).  😉  And she whines to get all points across which is slowly driving me to the brink of insanity.

Ben saw a developmental pediatrician only once.  We didn’t love him but we did gain some information that was valuable for his years to come.  He told us to make sure he was never in a special needs-only classroom.  He needed to be with typically developing peers.  He also told us that fatigue would be Ben’s biggest struggle in life.  We made sure he always had typical peers to learn from and he was totally correct about the fatigue issue…at least thus far.  So I’m anxious to know what this doctor can do to help Kelsey.  Again, she’s come so far but also has so far to go…

Swinging's my favorite!
Swinging’s my favorite!

So, one appointment down, two to go.  It’s a week with a lot of stress and I can only hope that the next two appointments go as well as, if not better than today’s.  Thanks for your continued prayers and good wishes.

Going with the flow

As I age, I’m learning to go with the flow.  This is very, very hard for me.  Many-a-fight has taken place between Dave and I because I didn’t go with the flow and he did.

Today I had myself all in a tizzy because plans to hang out at a friend’s house on a hot day turned into plans to play in the sprinkler (Hi, friends from the playdate who are reading this…love ya!).  Through only fault of my own, I didn’t know of this plan until both kids were loaded into the car…with the engine on…without any provisions to play in water or sun of any kind.  And when I read the text, I freaked a bit.

I stormed into the house.  I grabbed Ben’s bathing suit and some sandals because he had his braces and sneakers and socks on.  If I had planned ahead, to make life easier, I would have made him wear said sandals, swim trunks and a t-shirt to avoid the wardrobe change.  While he can totally dress himself.  And while he’s even mastered (just this summer!) taking his shoes and braces off, he cannot, yet, put the braces and shoes back on. He can do sandals, and velcro shoes without braces, but his everyday shoes are a feat for the feet (and hand dexterity) he’s yet to accomplish.

So I had a whole (probably way-exaggerated) picture of cranky Kelsey crying while Ben was in need of help getting wet clothes off, and shoes and braces to be put back on. I purposely didn’t grab Kelsey’s suit or swim diaper because there was no point.  She would hate it all, I was sure.  And since she’s not walking…crawling through the sprinkler doesn’t sound appealing, anyway. I could feel my blood pressure escalating and someone whispering in my ear–“Relax. It will be fine. He will love the sprinkler. She will be a mess, but you will survive like every other day. And a day spent with your besties will put you in a better place, no matter what. Relax!”  But it took the 45 minute drive to get to that place…of relaxation and our destination.

With special needs, well, things are different.  Things aren’t always more difficult, but they do take a lot more planning.  I am good at planning.  Very good.  So good that it sometimes it is a TAD difficult for me to adjust the plan on the fly.  ‘Hence the arguments with Dave I mentioned earlier.  And the escalating blood pressure in the car.

BUT, all went “well.”  Both kids were happy at our beloved friend’s house.  There were toys and cats and snacks to make everyone happy.  When the sprinkler portion of the day took place, Ben opted to stay inside alone to play with the cute cats he was suddenly in love with.  No need for braces removal of any kind.  My always-thinking-about-others-friend mentioned they had their baby swing in storage that she could hook up to their playset for Kelsey while the others played in the water.  Ben was happy.  Kelsey was happy.  I was happy.  All because I went with the flow…

**Disclaimer–To keep things “real,” there was also a lot of pleading for Ben to try the sprinkler (we’ve avoided it all summer), Kelsey whined through the whole lunch and didn’t eat anything, parents were exasperated with car companies on the phone, and a child may have gotten their finger stuck in a rotating sprinkler blade which led to a hurried and subbed-in lunch making with a lot of medics on the scene for the crying kiddo.  But…even still…we all were better-off for the visit.  Thank goodness for friends and plans.**