Updates through 8/30/17

We haven’t posted because there hasn’t been much new to report.

Hurricane Harvey visited New Orleans this week.  It was fairly mild in our area of NOLA- our street flooded, which it does for every rain, but otherwise it was just some thunderstorms.  If I hadn’t been paying attention to the weather, I wouldn’t have even realized we were in a hurricane.  (Speaking of flooding on our street, it seriously annoys me that our neighborhood doesn’t have a drainage system, but if you go 2 blocks/1 street over into the “nicer” neighborhood, they do).  We still went in for treatment for Monday and Tuesday.  Tuesday we actually ended up being the only ones there for treatment at our regular time.

As I mentioned before, the laundry room for this house is down an outdoor flight of stairs.  After it stopped raining Tuesday, Jess went downstairs to switch a load of laundry. Due to the rain and the fact that the stairs are wood, the stairs were very slippery, and she fell down the stairs–twice.  I spent a while Tuesday night panicking over how bad it could have been if Jess had been seriously injured and unable to feed Lexi.  Luckily, she is just a bit banged up and bruised, but it could have been so much worse.

I’ve said it before, but I think it bears repeating– inchstones, not milestones.  Lexi’s inchstone for this week: Tuesday, Jess was getting ready to run out to pick up our pizza (pizza during a hurricane is totally a “normal” tradition, right?).  As she crossed in front of Lexi to grab her purse, Lexi realized she was leaving, and said “Bye!”  It was the first time she has ever realized someone was getting ready to leave, and said bye without being prompted.

Today, Lexi took the first bottle from me since April.  Given my panic last night, I’m not convinced this is coincidence.  It very well may be that she heard me panicking last night, realized that it was really upsetting me that she wouldn’t eat for me, and decided to start cooperating.  She’s frequently demonstrated that she’s more intelligent than even we give her credit for, so I wouldn’t put it past her.  Either way, as it turned out the issue was that my shoulder simply wasn’t strong enough until this week to hold her in the position she wanted to be held in.  It took me literally holding the bottle in her mouth for 20 minutes while using a trick her OT taught us of applying gentle pressure under her chin before she finally gave in and ate, but she did finally eat.  Even if I can just get Lexi taking 1 bottle a day from me, that will be a huge load off Jess.

In other news, we finally broke down and hired a sitter over the weekend.  We really liked 2 of the people we interviewed (Violet and Chloe), so we tried them both this week.  While we liked Violet better in the interview process, Chloe was better qualified, and after having them both watch Lexi, we liked Chloe a lot better.  Violet was great at playing with Lexi, but was awkward holding her, and didn’t really seem to connect with her or play the games Lexi enjoyed.  Chloe really met Lexi where she is, and seemed way more comfortable holding her.  Lexi also seemed to connect with her better.  Although she refused to eat or take her medicine from Chloe, I think it was because she knew we were here and would take over.  Next time, we’re going to try not being here and see if she will eat if she knows we aren’t here to take over.

The last week, Lexi hasn’t been sleeping well (4-6 hours a night routinely).  We suspect this may be due to all of the new things she’s learning, and that she’s just too excited to sleep.  Unfortunately, the brain heals best during sleep, so we’re discussing options with the doctor to get her sleeping again.  One of the things we’d really like them to do is increase her oxygen ratio, since she’s currently on a mix of oxygen and room air.  Dr. Harch is being really conservative with her mix since we saw such huge improvements so early on– a little overly conservative, in our opinion.  One thing that several parents have told us is for the kids that don’t sleep well, increasing the oxygen helped a lot.  Another option would be a sedative of some sort.  While we aren’t overly fond of this option, it is so important that she sleep!

In mobility news, she’s been working really hard during tummy time on lifting her head, pushing up on her arms, and rolling.  Our new agreement is that she isn’t allowed to sleep in the bed with us until she can get herself there, and she wants to sleep in bed with us so bad that she’s actually working during tummy time.  She’s also been working hard on her sitting, and has started supporting her weight during standing practice for 5-10 seconds at a time.  We are so optimistic with the progress she’s been making!!

That’s everything for now.  Until next time!

 

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Pictures & Videos Pt 1

They say a picture is worth a thousands… but a video is priceless.  With that in mind, here are a whole lot of pictures and videos from our last week to show you just how far Lexi has come.

Sitting Practice

Using her eyes!!

Sweet baby giggles

Goofing off with Mommy!  Look at how straight she’s sitting!!!

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Taking a nap in the big girl bed

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Her hair is long enough to braid!

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She picked up a toy and brought it to her mouth!!!

 

First weekend/Second week

Friday morning we started the day by heading down to the French Quarter  to Cafe Du Monde for beignets.  It was a bit of a disaster, as we had initially planned to walk (about 20 minutes), but we had made it less than 2 blocks from our house when it started pouring.  Jess ended up running back to the house for the car, while Lexi and I waited under an overhang.  Naturally, by the time she made it back to us with the car, it had stopped raining.  Welcome to New Orleans.

While the beignets definitely lived up to their reputation, the restaurant itself is hot, crowded, and LOUD.  Despite all that, when the woman at the table next to us got up to leave, Lexi actually made eye contact with her, and smiled when she said hello!!  I may or may not have started crying in the restaurant.  😉

We scheduled Lexi’s second dive for 1:30-2:30 because she eats lunch at 3.  That time has worked so much better.  She tolerated the chamber really well, and enjoyed a solid 45 minutes just laying down and cuddling with Mama, listening to Food Network (there’s a tv right outside the chamber, and a speaker in the chamber.  You can ask them to put it on whatever channel you want).

After the dive, we went back to my mom’s hotel and went swimming.  While fun, this ended up being a HUGE mistake.  Lexi woke up throwing up around 2am Friday night, and my right arm was hurting a lot.  By the time we were up for the day on Saturday, I could barely move my arm at all without excruciating pain.  For a while, I was scared I had damaged it dealing with Lexi’s puke-pocalypse.  It turns out it was just sore from over-using it swimming.

This weekend we intended to go to the French Quarter Saturday, and the aquarium Sunday.  But between my shoulder and being exhausted from being up with Lexi, we ended up spending Saturday cleaning up around the house, doing laundry, and shopping.  Sunday Jess was throwing up, so I’m thinking Lexi must have had a stomach bug, and gave it to Jess.  Unfortunately, this effectively ruined our weekend plans.

Monday’s dive went really well.  She’s really tolerating everything but the oxygen mask beautifully, and we’re getting into a rhythm.  The best part about our new dive time is that it’s right over nap time, so she’s pretty relaxed and sleepy in the chamber.

Unfortunately, Lexi’s tummy wasn’t feeling well Tuesday, and we had to skip her dive.  Jess won the Supermom of the week award though, when Lexi started gagging, and Jess scooped her up, ran into the kitchen, and got her over the sink before she threw up.  No mess!

Wednesday, she was badly constipated, and didn’t eat at all before the chamber, so she fussed during the dive.  Of course, immediately after putting her in her car seat after, she fell asleep.  We finally had to wake her up around 3:30 to eat,  but she missed breakfast entirely.

Today’s dive went well, except that she twitched almost the whole time.  The oxygen mask is really stressing her, so I’m going to talk to the doctor as soon as possible to find out why we need it, and if we can just pump the oxygen directly into the chamber.  The good news is that she doesn’t have to wear the mask directly on her face, but this means I have to hold it near her face for the entire 45 minutes, so we can’t really do anything fun.

Now on to what you really want to know: what Lexi is doing now.
In the last 5 days, Lexi has started:
— making eye contact with strangers
— looking around unfamiliar places to try to figure out where she is
— holding her head and trunk way more steady
— clearer verbalizations
— holding conversations, including back-talking (see below)
— spontaneously playing with toys
— smiling/laughing while playing with toys
— playing with her squeaky monkey, including tracking it after it’s been moved
— able to use restaurant high chairs with minimal support
— smiling when you kiss her or tell her you love her

In other exciting news, the girl who started it all, Eden, has treatments at the same time as Lexi, so we’ve gotten to meet and talk to her mom, and even meet Eden.  At some point, we hope to get a picture of Lexi and Eden together.

And your funny Lexi story of the week:  many of you know that since April, Lexi has categorically refused to take a bottle from me.  Tonight, we sat down on the couch together to discuss this.  Here is our conversation:

me:  you know, Lex, Mommy can not give you every single bottle you eat for the next 2 months.

Lexi: want to!

me: *attempts negotiating with stubborn toddler* What if you only take one bottle from me a week?

Lexi: No!

me: *attempts further negotiations*  I continued trying to give her a bottle for another 5-10 minutes, before finally giving her back to Jess.

Lexi:  I win!

me:  No, Lexi, you don’t win.  No one wins.  Mommy is tired and wants a break from feeding you.

Lexi: want Mommy.

Stubborn toddler is stubborn, and very opinionated.

Pictures and videos coming tomorrow, as it’s currently 11:45 NOLA time (12:45 EST) and I’m tired.

 

Our first week in NOLA– and Lexi’s first dive

Wow, what a week!  Saturday, we left Cleveland and drove to Louisville.  After spending the night in Louisville, I drove on to New Orleans, stopping in Birmingham, AL to pick up my mom.  Jess and Lexi stayed in Louisville, and flew down Monday to join us.  It has been a rainy, and packed few days, as we got settled in at the house we’re renting.

The house:  The house is in a pretty colorful, up and coming neighborhood, but it’s very close to the French Quarter, and for all that the neighborhood looks rough on the surface, we’ve felt very safe here.  It’s an old, mostly restored 2 bedroom, 2 bathroom house, that was clearly stocked by a bachelor.  There’s an entire drawer of beer cozies, but no measuring cups or spoons.  The living room has been meticulously remodeled, but the rest of the house could definitely use more work.  It’s up a flight of stairs, which means the downstairs is also down a flight of stairs (at least it won’t flood in here!).  The food recommendations the owner left for us are 99% bars/taverns.  There’s no drain stopper for the tub.  The bathroom door in Lexi’s room doesn’t stay closed.  The curtains are for privacy only, and don’t block ANY light, so we had to buy our own black out curtains.  The remote for the tv doesn’t quite reach from the couch.  There are bars on the windows, and locking metal gates in front of the doors.  Like I said, it’s colorful.  🙂

HBOT:  Yesterday was Lexi’s intake appointment for the HBOT.  The intake was fairly standard– medical history, brief exam, and a video intake to establish her baseline.  It was emotionally a bit difficult, especially given some of the things we learned reading my birth records and her NICU records.  However, she was refluxing/vomiting a lot yesterday (over a dozen times during her intake assessment) so the doctor decided to hold off on starting the treatment, and had us call this morning to update them on how she was feeling.  We called at 1pm to let them know she had stopped throwing up late last night, and they had us come in almost immediately to start the treatment!  We were very surprised how quickly they squeezed her in.  The chamber is essentially a long tube.  They slide you in on a stretcher bed, and then you lie in the chamber and watch tv for 45 minutes.  The best part is that I get to go in with her.  The pressurizing and depressurizing is a little uncomfortable, but Lexi tolerated it well.  However, I had to hold an oxygen mask to her face, and that she HATED.  The entire 45 minutes we were in the chamber, she kept saying “OUT!” and trying to push the mask away.  She also kept trying to bite me, which made it a little difficult to manage her in such small quarters.  When they finally turned off the oxygen flow at the end, she laughed, which was totally adorable.  Here are pictures of us in the chamber.

Within about 20 minutes of starting the treatment, I started to notice a difference in how she was looking around.  By tonight, we were seeing HUGE improvements in both her visual curiosity and her head control.  During dinner, she kept looking around the restaurant, playing with things on the table, making eye contact with people even across the table, and was sitting really well on Jess’s lap.  Honestly, we’re amazed at how well she’s doing after just one treatment, and for perhaps the first time, we really have hope that something is going to help her.

Below are 2 videos.  The first is her in the chamber, and really showcases exactly how much she HATED the chamber.  The second is showing off how much better she’s tracking, and finding things, after her first treatment.

Lexi in the Chamber

Playing in the car after her treatment

30 Days of Hope-Day 4

Hope is being able to see that there is light despite all of the darkness. — Desmond Tutu

Today, Lexi is 18 months old.  Yesterday marks one year since she was diagnosed with Infantile Spasms.  It took us until May to get her in with a specialist who knew how to properly handle IS… or so we thought.  After just 2 months on the medication, she was spasm free, and we thought we were in the clear.  Her neurologist never ordered a follow-up EEG to make sure the damaging brain pattern was gone.  He told us it didn’t matter, and because we wanted to, we believed him.  Because of that, we have lost so much development time in the last year, while the hypsarrhythmia lingered.  We just wanted so badly to believe she could still be normal– that the IS didn’t really mean anything because of course her brain patterns are chaotic– how could they not be to overcome such staggering odds?!

It’s not an easy thing to admit that you made a mistake, especially when the odds are this high, but we did.  We trusted a doctor, we didn’t question enough, didn’t push hard enough… and because of that, not only did we not know that the hypsarrhythmia still needed to be treated, we didn’t know that she was seizure free, and we let him add a medication to control a seizure that wasn’t even a seizure.

It’s an uncomfortable truth that sometimes you’re going to make mistakes, and sometimes the consequences are going to suck.  It’s how you react afterwards that matters.  And I’ll be honest, I don’t know the RIGHT way to react to something like this.  For me, personally, I have stopped just taking a doctor’s word.  I trust nothing, and question everything.  Doctors that don’t know us well probably hate us, but that’s okay.  At the end of the day, these doctors may be experts in their field, but we are experts in LEXI, so we will fit their opinions into our big picture, and decide if we think their recommendations are going to be best for Lexi.

But you’re probably wondering what this has to do with hope.  Part of having hope, I believe, is learning to take the bad with the good, and trusting that one day it will all balance out.  And part of that is to focus on building a team of providers you CAN trust.  It’s not being afraid to search out new providers if you aren’t happy with the one you have.  It’s learning how to put together a team that functions as a team, and where everyone works together for what is best for Lexi.  It’s finding providers that check their ego at the door, who work with us, not above us.

And part of that is also learning how to accept your mistakes, learn from them, and move on, with hope and faith that it won’t happen again.  It’s learning not to be paralyzed by missteps, but inspired by them to do better.  And above all, you can’t have hope if you don’t have faith.  Faith in yourself, faith in the team you’ve built, and most of all, faith in the warrior that all of this is for.

30 Days of Hope– Day 3

I Wouldn’t Change the Past Even if I Could

“Sometimes letting go is simply changing the labels you place on an event. Looking at the same event with fresh eyes.” ― Steve Maraboli

There are many words I would use to describe Lexi’s birth and first month, and almost all of them are negative: traumatic, intense, difficult, emotional, terrifying… We were brand new parents, with limited medical knowledge, or even exposure, thrust into a world of diagnoses, where medical jargon was used more often than “real” words, forced to make decisions with terrifying and uncertain consequences.  And then we were brand new parents, alone in a city where we knew almost no one, facing an uncertain future with a medically fragile and complex child, trying to make sense of a brand new world where very little made sense, and even less seemed fair.  So, we set out to find a community… we made connections, we made friends, we built a life and a support network, and it helped to feel a little less alone.

Without the uncertainty and complexity of suddenly finding ourselves parents to a child with complex needs, we would never have done that.  Without our daughter, we would have missed out on so many rich, wonderful friendships and experiences.  We would have walked away from her birth the same people we walked into as, spent most of her first 6 months not really leaving the house, and not made real, lasting connections until well into her first or second year, if even then.  And sure, without the roots here in Cleveland, moving would be so much less messy, but there are so many people I can’t imagine not having in our life, and even if just for those connections, it has all been worth it.

30 Days of Hope–Day 2

Today’s 30 days of Hope is brought to you live from UH Rainbow Babies and Childrens Hospital, where Lexi is once again hospitalized for dehydration and constipation.  I didn’t get to post yesterday, so here’s day 2, a day late.

Holding on to hope when you lose “normal”

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.” –Anne Lamott

When Lexi was about a year old and still not sitting or really eating solids, we realized it was unlikely we were ever going to get “normal.”  It was a devastating realization, and it took months to recover, and learn to stop hoping for any specific outcome, but just for her to have her best function possible.  It still isn’t always easy, but we discovered that the secret is in comparing her to her past, instead of comparing her to what other kids her age are doing.  The most crucial thing we can do for our own happiness is to look at where she has been, and where she is, and not to worry about where she’s going.

It has been a year and 2 days since we got Lexi’s first wobbly attempts at sitting on video.  There have been so many moments in the last year where I’ve wondered if she was ever going to sit on her own.  We thought surely by a year, she would be sitting.  But a year came and went, and so we thought definitely by Christmas, but that didn’t happen either.  And then we thought she absolutely HAD to be sitting by 18 months old… but she’ll be 18 months old tomorrow, and although she’s so much closer, she’s not quite there yet.  But, I look at where she was just 6 weeks ago, when our nanny left for maternity leave, and where she is now, and I KNOW she’s closer, and that’s what matters.  And that’s the secret– you keep fighting, you keep pushing, you keep believing that if you try hard enough, you’ll get there, no matter how unbelievable that feels.  And no matter how hard it gets, you never, ever give up.