Baby 2 - 10 weeks

I suppose it’s time to start this - a few weeks later than I did with Adelyn. Sorry sweet baby #2, mama’s a little busier than I was with your big sis but I promise to do my best to document our love for you. And even when I fail at that, we love you to pieces all the same! 

How far along: 10 weeks 

Baby’s size: A prune

Total weight gain / loss: -6/-7, morning (all day) sickness is really kicking my butt 

Gender: Not sure yet, but Mike claims to be an “expert” sonogram reader and he says it will be a boy now that we’ve seen pictures of our little prune’s features! We’ll see if he’s right ;) 

Maternity clothes: Nope

Stretch marks: Nope

Sleep: I’d be sleeping FINE if it weren’t for big sis’s midnight wake ups lately... stay asleep Adelyn, I’m trying to grow a baby here! 

Loving: We saw Baby on an ultrasound this week and got a great picture of him or her. We’ve been nervous about a miscarriage (I’ve had 2 since Adelyn) and it felt SO good to see that tiny little heartbeat (fast and furious at 186 beats per min!). Our little warrior was even flailing little arms around at just 10 weeks in the ultrasound- obviously waving to mom and dad ;) I cried happy tears the majority of that evening! 

Loathing: Everything else. This pregnancy has been really hard on me so far - feeling sick and exhausted all the time, and vomiting at least once or twice a day. All while “faking it” that I feel fine, because we’ve kept this pregnancy a secret from everyone so far, even family. 

Missing: Feeling like a normal functioning human. 

Movement: Nothing

Cravings: Even water makes me sick.. soooo, no cravings lol

Aversions: Everything. Things like protein and veggies (the good stuff for me and baby) are the worst 

Labor signs: Nope

Symptoms: I think I covered them all already above 

Exercise:  Pretty much nothing since I can barely make my body move right now. We try to take Adelyn on walks when it’s not too cold or icy 

Belly button: Same old

Wedding rings: Fitting just fine 

Mood: Medium - it’s hard to be cheery when you feel so crummy and tired all the time

Husband: Being saintly as per usual. For those of you who know him personally, you know that he’s about the hardest working man you’ll ever meet. Well on top of everything on his plate right now, he’s also taken on pretty much all meal prep (which is typically my territory), while just going near the smell of cooking food right now makes me sick! 

Can't wait for:  End of first trimester so I can start feeling normal again! 

Baby 2 - 19 weeks

How far along: 19 weeks 

Baby’s size: mango/zucchini

Total weight gain / loss: +4/5 lbs 

Gender: It’s a BOY! 

Maternity clothes: Some, but still wearing my jeans with the “rubber band trick” and normal tees stretch over an obvious baby bump

Stretch marks: Not that I’ve noticed 

Sleep: Sleeping well! 

Loving: Feeling my sweet boy starting to move more often 💜

Loathing: Allergy season 😏

Missing: Couldn’t every pregnant girl use a good cocktail as the first days of high 60s/low 70s weather start coming? 

Movement: He’s still little and not super frequent, but he most certainly makes his presence known!! (Just to mama for right now - can’t be felt from outside the belly, but daddy can’t wait for that!)

Cravings: Sugar. But that’s just normal me lol

Aversions: I don’t think I’m having any right now. 

Labor signs: Yeah, no. 

Symptoms: Heartburn, increased sensitivity to my seasonal allergies.. I think that’s it! 

Exercise:  Lots of walking and cat/cows! 

Belly button: In place 😉

Wedding rings: Normal fit.

Mood: Mostly good, but a little moody or emotional from time to time

Husband: Busy as usual working hard for our family 💕

Can't wait for:  My prenatal appt next week to go over the 20 week anatomy scan 😁

Adelyn's Open Book - And The Story Has Only Just Begun

Thank you to everyone for the overwhelmingly positive response to my last post on sharing Adelyn's story, requesting you to ask your questions, and end the silence that surrounds special needs.  Both privately and publicly, I was flooded with messages of encouragement, gratitude, strength, and honest heart-felt questions. We are so blessed.

As you know, we were at CHOP this week, and that was the reason for the delay in this follow-up post. Some of your questions are my questions too, and I wanted a chance to talk to Dr. Vanderver for the most "up-to-date" info before sharing.  I don't have answers to everything, but will answer as honestly as I can for all of your questions.  So in no particular order, here goes!

Is leukodystrophy the official diagnosis? Have the doctors determined what type? Has sweet Adelyn been given a new or more hopeful prognosis (it seems she's doing so well)? 

*All of these questions are my own - the questions that keep me up at night swirling in my head. The short answer is we truly don't know right now.  Adelyn's genetic testing all came back normal in August, which was certainly hopeful.  I asked our doctor yesterday specifically, "Is Adelyn considered undiagnosed leukodystrophy, or just undiagnosed period right now?"  Dr. Vanderver told me it was a great question and she wished she could give me a clear answer, but assured me that regardless, our care with her and the Leukodystrophy Center is completely unaffected and as a white matter specialist, she will continue to see Adelyn as long as we keep coming to her, and she will keep searching for answers for us.  Adelyn has another MRI coming up in the next couple months (not scheduled yet, so I don't know exactly when), and those MRIs over the next few years will be helpful, along with how she progresses, in determining a diagnosis and how she will do long term.  

We recently discovered that Adelyn has a few very subtle anatomical abnormalities (like slightly off-centered pupils), that are formed during the end of the first trimester.  In going back over my sick days and medical records, I was very sick at that time.  There are no guarantees or definites,  but there is also a possibility this was all caused by a virus in utero.

We choose to focus on the hope that Adelyn's condition is not degenerative and provide her with all the resources, therapies, and medical treatments she will need to live a long and happy life.  And no matter what, we really feel that every day with her is a blessing and a miracle.

What have the latest scans/MRIs shown? 

*Her August MRI revealed the hydrocephalus, and because of all the extra fluid around her brain, the doctors were unfortunately not able to see the white matter clearly.  At the time, the MRI did show atrophy of the brain, and it was unclear whether or not that atrophy was caused by the hydrocephalus (fluid causing pressure and "squeezing" the brain, essentially compressing it), or if it was the disease regressing.  At our ER visit in early November due to unexplained fever, they did a CT scan.  This revealed that her brain had grown completely back to normal size, so we now know for sure the atrophy was caused only by the hydrocephalus, and was not progression of disease.  However, that CT also showed unexplained bleeding around her brain, which was cause for much confusion amongst the doctors.  At her next MRI, they will be looking at both Adelyn's white matter (which should now be clear to see since the extra fluid from her hydrocephalus has been resolved with her shunt), and checking on the bleeding to see if it has resolved, if there is any new bleeding, etc.

Are there any clinical trials for treatment she could participate in, in the future?

*At this point, unfortunately no, because we do not have a diagnosis.  Hopefully if we can put Adelyn's puzzle together at some point, we will be able to begin looking for trials she could be part of, but it's simply not possible without knowing the cause of her disabilities.

What will happen to your service dog if/when Adelyn passes away?

*We are hopeful that Adelyn will outlive her service dog.  If that were to not happen, we will sure as HELL be keeping that amazing dog and integral part of our family! ;)

Can you have more children? Do you want more children? Will they have the same problems as Adelyn?

*All of my good friends and family know how much I have always wanted a big family.  In an effort to keep this an open and honest post, with Adelyn's initial diagnosis, I was hit with blows from so many directions, and I really felt like I was grieving not only Adelyn's grim prognosis, but also the "loss" of children I hadn't had yet.  From that very first day in the hospital, when we thought Adelyn's condition was definitively genetic, Mike and I resolved that our family is not done.  Whether it be through a normal pregnancy or adoption, Adelyn will have siblings one day.  She deserves them, and we know in our hearts that we are called to be parents to more than Adelyn.  Now, with normal genetic results, we have a very low chance of future children having similar issues and we are excited and eager to expand our family when the timing is right.  

How is your marriage? 

*Stronger than ever before.  We need each other, both emotionally and practically in divvying up tasks to meet Adelyn's needs.  We are so blessed to have family nearby that is very eager to babysit and provide Mike and I with date nights so that we can make our relationship a priority.

How is Mike with all of this? 

*Amazing.  Seriously.  He's strong, he works harder than ever before, he makes us laugh, he knows what to say when I'm feeling down.  I step back sometimes and have no idea how he does it... but he's a big part of the reason I can do it too.

How do you do this? 

*I look at that beautiful, perfect baby girl and have all the reason I need.  One day at a time.

Are you resentful toward people with "typical" children? Are you angry or bitter? 

*Honestly, no.  I know that answer isn't the same for every parent with children with medical needs, but I really feel like she belongs to me and I belong to her.  There's no one in the world I would rather be mommy to, and that means I take all of her.  She was meant to be ours and we'll take the challenges that come as best we can.  In fact, ya'll should be jealous of ME that I get to have this sweet babe all to myself! ;)

What do Adelyn's seizures look like?

*Twitching of her arms and legs and an absent stare.  They are focal, or partial, seizures, so they aren't quite as dramatic as the "grand mal" seizures you might be more familiar with from movies and such.

How many appointments do you have a week/month?

*This varies quite a bit sometimes, but right now, we have 6 therapies a week, 1 acupuncture session a week, vision therapy once a month, and roughly 1-5 medical appointments a month.

Do all the doctor appointments overwhelm you? 

*They certainly could if it weren't for two really important factors: 1. My BOMB medicaid attendant, and 2. I seriously love our doctors and therapists SO much that I genuinely look forward to (most of) our appointments.  It feels good to have people on our team, fighting for Adelyn with us.

Do you really need a Medicaid attendant? What does she do?

*Need is a tricky word.  Could we survive without her?  Yes, we did before we were approved.  But having her gives us some semblance of normalcy in a life that otherwise couldn't.  By helping with therapies, medicine, and daily tasks for Adelyn, I'm able to do things like household chores, grocery shopping, and eating (many a lunch went uneaten before she started).  Since Adelyn can't do independent play and still develop in the way a "normal" child does, I was always having to choose between letting her lie there unengaged (and often crying) or not doing anything else at all.  I'll give you a hint which of those options I chose - and our home greatly showed it!  Having Lara start as our attendant has made a world of difference in being able to maintain my sanity and feel almost "normal" amidst days filled with therapies and helping Adelyn.

Are you exhausted? Are you getting enough sleep? Do you take any time for yourself? Do you ever feel guilty about it? 

*Wellllll I'm a mom, so yeah, I'm tired some days... I bet you are too! ;)  Adelyn has always been a great sleeper and I've said that God knew she would be a handful so He at least made sure we are well-rested.  Haha.  Yes, MOST nights, I really am getting enough sleep.  I do take time for myself too.  Mike and I get date nights a couple times a month, and I love crafting after Adelyn goes to bed at night - it's my "relaxing" place.  I don't feel guilty about it because having that time for myself helps me be a better mom, and that's better for Adelyn.  I also think this contributes to why I don't feel angry or bitter (see question above), and it comes full circle that keeping time for myself (and my sanity lol) benefits our whole family.

Do you need meals (even once in a while)? How can I better support you through all of this? Are there any tangible needs that can be met through me or the rest of your tribe? Do you need any additional financial support? Do you say “yes” when people ask to help or do you just say thank you and not take their “help”?

*These questions might be the hardest of all.  I guess I have to admit we are terrible at accepting help with two exceptions: 1. family - we abuse their generosity more than we probably should! and 2. when people don't ask to help, they very firmly insist or just do things for us without asking at all.  Like I said above, need is such a tricky and relative word.  Do we need meals? No - and quite frankly, Adelyn and I have dietary restrictions that make it quite difficult for people to bring us meals anyway (gluten and dairy free).  I really do just fine getting meals on the table most nights, especially now that we have a Medicaid attendant.  Is it wonderful when people bring us meals anyway? Yes - hell, what mom wouldn't love a delivered meal, special needs aside?? ;)  Thankfully our insurance really has covered almost all of the costs associated with our hospital stays, doctors visits, and therapies, so we don't need financial assistance.  Honestly, the thing we love most from our tribe is when people tell us they are keeping her in their thoughts and prayers.

What should I say? What should I not say? 

*Most parents LOVE to brag on their little ones, and we are no exception!  Ask us how she's doing, what's new, her likes and dislikes, and anything else you would ask the parent of a typically developing kid. If you have medical questions about her, just think of it as you would a kid who broke their arm or had the flu... feel free to ask questions about her hospital stays, how she's feeling or doing, etc.  Don't -- worry so much about saying the wrong thing... it just leads to more awkwardness!  And if you do realize you accidentally said something insensitive or put your foot in your mouth, a simple "sorry, I don't think that came out how I meant it" is perfectly fine - I promise I'll smile and tell you I understand (and mean it!).  Don't feel like you have to have the perfect encouraging or inspirational sentiment to share.  Just speak what's on your heart, ask about her, tell us she's cute ;), and listen to what we have to share.  

Thanks for continuing to join us as we write Adelyn's story!  Her tribe keeps us going, and the fact that you care means everything!

We Need to Talk

Because this is hard, but it's harder alone. Because we're a tribe. Because you're curious and I would be too. Because I want you to know it's okay to ask, and because I want to encourage you to TALK to families with special needs.

A lot of people are scared to talk to you once you become a parent to a "special" child. They care - but they are scared.  How do you begin? What do you say? Will you put your foot in your mouth and say something that offends me? We've become a society so "in tune" with people's feelings that I worry we've gone too far. People are so scared to say the WRONG things, that they simply don't say the THINGS at all. And when we become distant from each other, when tribes drift apart, THAT, my friends, is what's scary.

So here we go. Ask me your questions. Open, candid, honest, scary, uncomfortable questions. Comment below, or click the link to a totally anonymous survey, and ask the things you'd like to know. I promise you won't offend me, and I'll collect them and put together a very open question and answer post.

Some examples of questions I (really) have been asked, and that I will answer, to get you started: 😉

~Can you have more children? Will they have the same problems as Adelyn?

~What will happen to your service dog if/when Adelyn passes away?

~How many appointments do you have a week/month?

~Do you really need a Medicaid attendant? What does she do?

~What do Adelyn's seizures look like?

Adelyn’s Open Book Survey

Poor Me

Dear Adelyn,

Oh baby girl, what a year we have had. It's the eve of your first birthday, and here we sit, ready to spend that special day in the hospital tomorrow, of all places. I've got tears in my eyes, but they aren't for the reasons you might think. I'm not feeling sad that we're in the hospital, and I'm not sad because of the challenges you have faced. 

No, tonight I'm a mom like every other and I believe these tears are a bit of a right of passage on first birthdays. My heart explodes with joy and the happy tears flow as I reflect on this past year and wonder how the time has gone by so fast. 

365 days ago I went to bed with you in my belly, knowing that the next day I would hold you in my arms. Nervous anticipation and aching hips kept me awake while I knew I should sleep. 

Poor me, I had no idea what was coming.

I had no idea how your fingers would feel curled around mine.

I had no idea how precious it would be to cuddle your warmth in the night, just the two of us, during your night feedings.

How you would play with your hair to soothe yourself.

How you would belly laugh at our silly voices.

How you would calm to any song and try to sing along.

How you would love the feel of your hands on daddy's hair.

Or the way you would smile up at me with big wide eyes like I was your world.

I didn't know you would be such a hard working baby, never giving up in your effort to reach new milestones.

I didn't know you would look so cute while sucking your sweet little thumb.

Or how it would feel when you bury your head in my shoulder for comfort that only your mommy can give. 

I had no idea how big my heart could swell.

I had no idea how the love of our whole big tribe would grow for you. 

Yes, poor me... 

I didn't know you yet. 

This has been the best year of my life. Happy birthday, baby. I love you so much, and I can only imagine what I will come to learn and love about you in the next year. 

You are beautiful. You are perfect. 

Love,

Mama

Children are God’s love-gift; they are heaven’s generous reward.  – Psalm 127:3

I Shall Live and Declare the Works of the Lord

The last few weeks have been a blur - everything happened so fast.  We've been anxiously awaiting our appointment at CHOP on August 24 to hear the results of Adelyn's leukodystrophy gene study, but it's far enough off that I've been able to try not to think of it much.

Mike's project at work has been going well, he tells me each night when he comes home.  And then one day he comes home and says, actually - it's going REALLY well.  They want him to deploy and continue the project in Afghanistan.  As soon as possible.  How quickly can they get him there?  In a couple weeks, if they can figure out the logistics fast enough.  A month or two if it takes longer than they'd like to get the orders in place.  Be prepared to go soon.  It's a relatively short deployment, likely two months.  We can handle that.

But then we remember.  The CHOP appointment.  I can do a lot of things.  I'm independent.  I'm strong.  I can handle a deployment.

I canNOT do that appointment on my own.  I can't hear the news of  OUR daughter's fate without him there.

So I frantically contact CHOP.  Please.  I need him there.  Help us... is there a way?

We'll do our best.  We'll try.  We want him here for the results too.  We'll be in touch.

Yes.  We did it, we have the results.  Your new appointment is August 3rd... NEXT week.

And, by the way, when you're here, we're going to need you to see an immunologist too.

Huh??  Okay...

I spend the next few days Googling everything I can think of related to white matter disorders and immunology.  There are a lot of explanations and I know it's fruitless to search for answers until they tell me the results on Thursday, but still, searching is SOMETHING.  It gives me a feeling of control to research and contemplate my personal theories.  I talk them in circles while Mike dutifully listens and agrees to each possibility.  To pass the time until an appointment we waited six long months for, and is now suddenly and imminently upon us.

And then Thursday arrives.  Adelyn is up at midnight.  Our alarms are set for 3 am.  Not much sleep, but we both bounce out of bed alert and ready to go when the alarm goes off.  Nervous chatter in the car.  Breakfast when we arrive.  My heart is pounding, my stomach aching, but I somehow manage to eat.  We walk out of the cafeteria and head to the 6th floor where the Leukodystrophy Center is located.  I burst into tears on the elevator.  "Already??" Mike teases and then whispers to Adelyn, "Daddy's nervous too, he's just better at hiding it than Mommy," with a laugh and a kiss to her sweet forehead.

We check in at 7:30 and are put in an exam room.  Our appointment is at 8, and every minute ticks by so slowly.  8:01. 8:02. God, where are they??  8:23, 8:24.  I'm practically holding my breath.  The doorknob turns, and the three familiar and friendly faces of the neurologist, genetic counselor, and nurse walk in, and I exhale.  Whatever it is, whatever they say, our baby is our baby and nothing has changed.  Nothing but our knowledge; SHE is exactly who she was when we walked in that door, and that doesn't change no matter what they tell us.

Our results, though, are surprising and more than a little unusual.

They found a genetic mutation on the LYST gene that is *sometimes* connected to a disorder of the immune system called Chediak-Higashi Syndrome (hence our appointment with immunology).  This disorder acts in many ways like a cancer, and does not present itself until teenage years or even adulthood.  There is treatment, and if Adelyn does in fact have this disorder, early intervention could be lifesaving.  This is in no way related to her white matter or current symptoms, but rather a hidden blessing in her genome sequencing that we could have otherwise failed to identify until too late when she got older and sick.  Adelyn is having blood work done and we will know in about a month or two if she has this disorder.

They did not, however, find ANY genetic mutations related to known leukodystrophy types.  Praise God!  This is amazing news.  It is still possible that she has an unknown leukodystrophy and the only way we will know that now is by watching whether her white matter in MRIs improves (not leukodystrophy) or worsens (leukodystrophy).  But to NOT find something is the best possible news, the best possible HOPE we could have been given.  Her odds of having leukodystrophy just dropped significantly - by 90% or more.  Chances are in her favor of the brain damage being something else altogether (one likely example would be a virus while I was pregnant). We have an MRI scheduled at the end of this month to see how her brain is developing, and will continue to have them periodically over the next several years.

My heart swelled so big it filled my chest and throat and then the tears started flowing freely again.  They handed me a tissue box and the neurologist, with her calm and reassuring demeanor, attempted to explain again, "This is GOOD news.  I know we didn't find the reason for her symptoms yet, but we consider this to be very, very good, and I promise we'll keep searching for answers for you."

I shook my head, and then nodded.  I swallowed and tried to find my voice, because what I needed to say was important.  "I know," I croaked out, "I know it's good and that's not why I'm crying.  I'm crying because I am so grateful to you.  For what you do.  We are so, so appreciative to you.  Your expertise, your knowledge, your passion for this field so that you can help families like us."  The words sounded so silly and far too insignificant in my ears as they came out.  How can I convey to this woman the magnitude of what I feel for her?  To her, we are one of hundreds of patients she sees.  I know she cares because she is passionate about her specialty, but nonetheless, we are one of many.  But to us - and I know to all the other families who see her - she is everything.  I joked to Mike later that what I really wanted to do was whisper "I love you" to her, but she might have gotten a restraining order.

Instead, I let the words I had already said suffice as she smiled and continued on.  I'm not sure if she knows how much she means to her patients.  I hope so, but the words don't exist for gratitude of this depth.

For now, we move forward with a sense of relief and renewed optimism.  If you are continuing to pray for us, we'd love to request these prayers:

~Pray for Adelyn to continue to make developmental progress
~Pray for positive results from her MRI at the end of this month
~Say a prayer of thanks for Adelyn's team of expert specialists, specifically Dr. Adeline Vanderver

I shall not die,

But live and declare the works of the Lord

--Psalm 118:17

Hallelujah! Hallelujah! Praise God, Hallelujah!

Our Debt

I'm now connected with several families of children with leukodystrophy. In conversations with them, I had heard several of them talk about improvements as a result of chiropractic care. With a new mission in mind, I began seeking to learn more and found that our insurance doesn't cover chiropractic in any situations.  For a few weeks I was disheartened, and wished we could at least TRY chiropractic, but at full price that simply wasn't realistically going to happen.

But then I remembered that over at the Deal house we keep knocking on closed doors until they open, and so with knowledge that this had helped not only delay regression, but also made improvements in other children with leukodystrophy, I began researching chiropractors certified in pediatric care in the area. I came across United Wellness in Herndon with phenomenal reviews (because if we're going to look into any addition to Adelyn's care, it's also got to be the best! ;). I shared Adelyn's story with them and agreed to meet in person to talk more.

I walked nervously into the building holding the most precious thing I own, and found that I was meeting with the director, a chiropractor, and an acupuncturist. They asked me questions about Adelyn, and allowed me to talk openly about her condition and symptoms, and my goals for her being there.

Then they told me they had spoken with the owner, and he had already decided they would provide comprehensive care for Adelyn completely free of charge - not only chiropractic, but infant acupuncture as well.  Her story had touched them and they wanted to be a part of her care team in continuing to support her and open doors of possibility.

The number of people we will be forever indebted to seems to grow exponentially each day, and we are floored by the love, kindness, and compassion we have been shown. I've never been more grateful for a growing debt, because this sweet girl is worth every thank you I'll never be able to repay.

 

Our happy little fighter