Growing and Thriving

How different things are from last year! This time last year we were in the hospital still trying to figure out what the problem was with Evie’s intestines. Dark days.

And now! Now she’s a giant! And she’s doing so great! Her first four years, she wasn’t even CLOSE to be on the growth charts. Even when she was growing, she still was just barely curving upwards. I plugged in her current height and weight today:

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Can you BELIEVE that????? Goodness, she’s just a tank now! It’s wonderful, absolutely wonderful, to not be constantly worrying about her growth. I’m so so grateful for how wonderfully she’s doing now. And she’s had just a stellar fall. Stayed healthy, kept growing, got some more iron, and is just a wild and silly girl.

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The girls wanted to have a photo session!

 

Both girls got to go Trick or Treating for the very first time! Just on our block, but they still had a ton of fun!

Both girls got to go Trick or Treating for the very first time! Just on our block, but they still had a ton of fun!

 

Started teaching Evie how to play Disney Infinity on the PS3. She's catching on pretty quickly! Such a smart girl!

Started teaching Evie how to play Disney Infinity on the PS3. She’s catching on pretty quickly! Such a smart girl!

 

We’re looking forward to the holidays this year, just to be HOME. Together. That will definitely be nice. God bless, everyone! And have a happy Thanksgiving next week!

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Support the CHARGE Syndrome Foundation!

Hey all! I decided to do a quick little shirt fundraiser for the CHARGE Syndrome Foundation! All proceeds go directly to the foundation to help support those with CHARGE syndrome in a variety of ways. Hopefully down the road as things with Evie settle even more, we’ll be able to invest more time and energy towards fundraising.

Here’s the design based off a verse from Evie’s hymn, “Praise to the Lord, the Almighty.”

“Praise to the Lord,
who with marvelous wisdom hath made thee,
Decked thee with health, and with loving hand guided and stayed thee
.
How oft in grief
Hath not he brought thee relief,
Spreading his wings to o’ershade thee!”

I’m using Booster to do the fundraiser and the shirts are available in Adult and Youth sizes. I may try to add a campaign with toddler and/or infant sizes if there is enough interest. Clicking on the shirts will take you to the campaign homepage.

All That Hath Life3All That Hath Life4Thanks in advance to everyone who orders!

 

 

 

 

 

 

 

 

Why Our Special Needs Child Has Secondary Medicaid

We’ve learned a lot about insurance over the last several years and I just thought I’d share a bit of that side of things. I had NO idea about most of this before Evie was born and I’m guessing that’s true for most the population. And I also know we’re generally hesitant to share this side of things, too. See, Evie has Medicaid as a secondary insurance and well, we don’t want people to think we’re just living off the state. But I didn’t realize how truly necessary Medicaid is to special needs families.

It is pretty much standard for kids with various disabilities to have secondary Medicaid, but every state is VERY different in how that’s done and who qualifies. In Iowa, Evie got a ‘free’ year of Medicaid because she was in the hospital longer than 30 days. When she was still in the NICU, the social worker suggested we start filling out the paperwork to get Evie onto a Waiver program. There are various Waivers available (and each state calls them some different including the Katie Beckett Waiver and here’s the neat backstory on that), but basically they ‘waive’ the income requirement by basing it on Evie’s income rather than our family’s. At first, we weren’t sure we really wanted to apply. I mean, we had good insurance, some money in the bank, a secure job. We should be able to handle this, right? Ha.

Maybe it was foolish, but I thought, “Well, our out of pocket maximum is X and we can come up with that money.” I just didn’t understand how insurance really works. I didn’t understand that that is only for covered services. I didn’t know that didn’t cover home care nursing. I just didn’t know. But we filled out the application anyway and had our free year while Evie was placed on the 10 month waiting list (I believe it’s significantly longer of a wait now) for the Ill and Handicapped Waiver. Those first 5ish months home, her secondary Medicaid picked up well over $10,000 of non-covered services and supplies. And that was BEFORE we started home care nursing.

NICU days

Our primary insurance REALLY is good in the grand scheme of things. It covers a HUGE majority of her costs, but we would have been nickle and dimed to death with copays and coinsurance and non-covered items without Medicaid. Each individual bill doesn’t look like so much, but they add up quickly. So just in the last few weeks, I got several insurance statements for various supplies and services. $112, $1.17, $40.49, $16.02, and 16 other smallish amounts for supplies, labs, scopes, consults, appointments and it totaled up to almost $650. That’s 2 weeks of insurance statements (I get maybe 3-4 each week) for various claims spanning a few months with no major surgeries, hospital stays, and maybe 2 appointments. That’s a slow few months for a kid like Evie. Medicaid picks those up and we can continue spending our money on those items that no insurance covers (like the ridiculously higher electric bill for all of Evie’s equipment. That stuff is NOT energy star rated. Or a reliable vehicle to get Evie to appointments) or the approval process would be so long that it harms Evie (her communication device and walker are just two examples of that). And we can also save our money for the day when (hopefully) Evie is declared ‘too healthy’ to receive any more assistance, but not quite healthy enough to just stop going to the doctor (because that day will never come. It just won’t). And again, private insurance does NOT cover home care nursing. Pretty much NO private insurance does. And when it does and when it’s tied to your employment, you can bet that families start worrying that the company will find a way to fire them just to cut back on that cost. But without home care nursing, families either have to put their child in a facility or give their child sub par care. Or run themselves into the ground until they can’t continue (that was how we decided to spend our first 5 months home with Evie because I didn’t want to admit I needed help).

I share this to explain how insurance all works when you have a child with disabilities, but also so you understand how important Medicaid is to special needs families. Our children aren’t on it because we didn’t have emergency funds or good insurance. They’re on it so their families don’t go bankrupt, so that we stay afloat financially and keep paying our taxes. So families don’t have to give up their children in order to get them the care they need. So children with disabilities can stay living at home instead of in hospitals or nursing homes. In the end, that helps SAVE the state money. There are fewer kids who are wards of the state and fewer families who go bankrupt and stop paying taxes and more kids who have better outcomes and can contribute to their communities in a variety of ways.

If we want to encourage families to keep children with disabilities (both before and after birth), we need to make sure that decision doesn’t financially destroy them. There’s no way to prepare for a medically fragile child. None. You can do everything right and it will simply not be enough. And you could put every spare dime toward medical costs and it won’t even put a dent in the piling debt. All to do the bare minimum of keeping your child alive.

We’re incredibly grateful for the help we’ve received from Evie’s secondary Medicaid. It’s allowed us to focus on Evie, to give her what she needs, to get her the best care available, and to give her and her sister (somewhat) normal childhoods. We’re still thrifty. We’re not ones who like spending money. But we’re glad that when we need to spend money to care for Evie, the money is there and not eaten up just trying to keep her alive.

CHARGE Conference 2015

So one of our big summer adventures back in July was attending our very first CHARGE Conference. This happens every 2 years and is a gathering of those with CHARGE, their families, and professionals from all over the world.

It

was

AMAZING!

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And overwhelming. That, too. But mostly just amazing.

Most of our time was spent in different sessions learning about so.very.many.different things. Therapies, education issues, medical research, managing various medical issues. That was the overwhelming part.

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I was so excited to get to listen to and speak with so many of the professionals that are part of the CHARGE community, though. These people have made such a profound difference in the lives of those with CHARGE. The research that is being done is fascinating as well…at least the parts I could understand.  My thinking capabilities were definitely challenged in those few days!

The girls fortunately had their own activities for the day.

2015But of course, the best part of the whole conference was meeting other families. I cannot even describe the beauty of being surrounded by 1200 people who GET it. Who don’t even bat an eye at a trach or feeding pump or walker or wheelchair or a child struggling with their balance. Who ooh and aah over the cute kids with zero regard to their extra medical attachments. Who smile to themselves at the baskets filled with complimentary hand sanitizer. Who cheer as loudly as they can for every single person in the talent show. Who require no translation of medical terminology!!!! Who understand that all individuals with CHARGE are so incredibly different that there cannot possibly be ONE right way to do things. Who love one another and support one another. Who laugh with each other and cry with each other. Who saw every person at this conference as a member of this special family that we all feel intensely blessed to be a part of.

20151Next conference is in Orlando in 2017. Goals for that conference are to take more time to talk with everyone and take more pictures! I’m so so glad that we were able to attend this year. Love our CHARGE family so very much!

Airway Update and Giggling

It’s been a while! And for good reason: we just haven’t had much to update. I’ll write up a post about some of our summer adventures, but we had no hospital stays, no surgeries, no major medical concerns of any kind and it.was.amazing. But we can’t walk away from it all forever, so we headed back to Cincinnati last week to take a look at her airway and figure out our next move.

First we checked in with Evie’s surgeon who did her exploratory surgeries and bowel resection. She couldn’t be there herself because she was needed in the O.R., but her nurse practitioner was extremely happy with how Evie is doing and said we don’t need to come back unless we have concerns. Yay!

Then we had appointments with her GI and pulmonologist, both of whom were thrilled at how BIG Evie is looking. I mean, she’s just HUGE now. She dropped down to around 23 pounds after the bowel resection while we were waiting for her bowels to wake up and now she’s a hefty 33 pounds! She just looks so so healthy and everyone was stunned at the change. We all keep saying it’s like she’s a completely different kid.

Hard to even look at how skinny she got after the bowel resection as we waited for her bowels to wake up! Now she’s just a tank!

The next day we had the scopes themselves and I was very nervous about them. We hadn’t looked at Evie’s airway since November of last year and I just didn’t know what we would find. Well, it certainly wasn’t horrible, but her aspirating is still a big concern so we need to take more drastic steps to help that. In December we’re going to do 3 things.

1) Remove Evie’s submandibular salivary glands. It’s pretty common in CHARGE for there to be excessive secretions. When that’s combined with the inability to swallow properly, all of those secretions dump into the lungs, which is Evie’s issue. Now, we’d love for her to learn to swallow properly, but at this point, she’s basically drowning in those secretions. You can imagine how difficult it would be to learn to swallow with a constant stream of junk overwhelming your system. Hopefully if we cut back on those secretions she can learn to manage them better over time.

2) Evie has a little…divot of sorts by her vocal cords. I think they’re calling it a mild laryngeal cleft. Normally when your vocal cords close, they close off the airway, but Evie has an extra space that allows fluid to still pass them. So we’re going to stitch that up and see if that helps the aspirating as well.

3) Evie has some scar tissue above her trach site that they’re going to remove. It technically shouldn’t make a big difference in opening her airway, but you just never know.

Evie’s Nissen Fundoplication has also stopped working. This is where they wrap the top part of the stomach around the esophagus to stop reflux. Evie’s was only ever a partial Nissen because of how small her stomach was/is, but she had a lot of stuff up in her esophagus during the scope. Her GI thinks it’s just from all the trauma of the last year. The violent vomiting, the constant scopes and surgeries, it all just stretched it out. At this point he doesn’t want to redo it (which I’m grateful for), but it means we will need to stay on continuous feeds for now (which I’m fine with). Not good news, but not horrific news.

Evie had stopped tolerating her speaking valve over the last year and since we hadn’t looked in her airway, I didn’t want her to push her to use it in case she wasn’t able to exhale properly. We did a quick test to confirm that she was in fact good to use it and now she’s doing great with it! She’s vocalizing a lot more and not needing nearly as much suctioning. She’s also getting LOUD! Good heavens, she can really yell when she’s mad about something! She’s exploring her voice a lot, much like a baby babbling, just trying out different sounds, so hopefully we’ll start to see some progress towards talking? Maybe? I honestly don’t really know. Evie is always full of surprises!

Diagnosis Day, Four Years Later

Dear Megan,

Tonight you got a call that you had prayed your whole life to never receive. You told God over and over again that you could not and would not have a child with special needs. You told Him you couldn’t handle it. You told Him it would hurt too much to watch your child struggle. You put your foot down. He could throw anything else your way, but your children were off limits.

But tonight, you got a phone call.

“Your daughter Evelyn has CHARGE syndrome.”

And then you cried those gut wrenching sobs that left you even more drained than you had been even after four weeks in the NICU. You cried for all the things you thought you would never experience with Evie. You cried for the struggles she had ahead of her. You cried for all the what-ifs that rushed through your mind.

But it’s going to be okay.

No, listen.

It will be okay.

I’m not saying it won’t be hard. It will be. You will soon be doing things you never thought you were capable of doing. Things will happen that will give you nightmares and bring you to tears whenever you think about them. This is not an easy path you are starting on.

But it is a good one.

Stop.

Listen.

It is a good path.

Eventually you and Evie will get a chance to bond away from the hospital setting and you will feel your heart explode with love every time you look at her. Your heart will feel immense pain you never dreamed of, but also incredible joy you couldn’t know existed. The two of you, mother and daughter, will have a bond like soldiers that have returned from war.

You will experience a level of joy that is saved just for special needs parents. Her milestones will never get old. You will never just accept them as daily life. Instead, a year af0527111054ter she starts crawling, you will still be awe every time she crawls. You will still giggle with glee every time she signs to you even six months later. When you watch her eyes track something, you will catch your breath and feel so incredibly grateful. When she responds to noise, you will always be excited.

And you’ll look back at these early days and wish you hadn’t been so afraid, that you’d enjoyed Evie instead of analyzing her. That you’d realize so much quicker that THIS little girl in front of you is the child you carried for months. It feels like THAT child died and that you are left with a stranger, but she’s not a stranger. She’s the same little girl who insisted on dislocating your rib and wedging her head into your hip. She’s the same girl who kicked her sister in the head when she felt squished by her snuggling. She’s the same girl that you carefully chose names for and sang to and loved. THIS is Evie. Stop fighting that. See her and stop fighting who she is. She is YOURS.

And yes, she has CHARGE Syndrome. She does. She also has eyes that will eventually settle into hazel and hair that is the most gorgeous shade of strawberry blonde. She has an impeccable sense of comedic timing and facial expressions that will always bring a smile to everyone around her. And she has health issues. She’ll need a trach and a feeding tube for who knows how long. And eventually you won’t care and you’ll want to write love sonnets to those two devices that have kept her here with you. You’ll get there. You will.

No, listen.

You will get there. And you’ll be so grateful to have THIS little girl in your family.

See you soon,
Megan


 

I’ve been writing this little letter to my NICU self for a while. Adding thoughts here and there, forgetting about it, coming back to it. And ya know, I really do wish sometimes I could go back and do it again with what I know now. I think it’d be better.

But maybe it’d be harder? Because I know her now. I love her. I can’t breathe when I think of life without her. And those early days were a bit touch and go. The shock and the grieving and the denial and the fog and the confusion and the…separateness from Evie, it all insulated me. It wasn’t real.

I think this last year has been harder than that first one. Back then we were grieving the loss of an imaginary child and an imaginary life. This year, we were living in constant fear that we’d have to grieve the loss of a real child and a real life. Evie isn’t separate from us anymore. Our lives are wholly entwined. And there’s no confusion over medical terminology or the reality of the situation. It has become more familiar in routine, but not any less terrifying at times. Our eyes are open to how much we have to lose now. She’s not just a baby that people claim is ours, but we’re not so sure of ourselves. She is OUR daughter. She is a little ball of sunshine in our family and we know how dark it would be without her.

I always thought this day, Diagnosis Day, would forever be one of the worst days of my life, but it’s not anymore. I honestly had forgotten at first that it was even today. It was an incredibly hard day back then, but now it just seems so…small. So unimportant. She had CHARGE before they told us. It didn’t change her at all. Really, it changed things for the better. It made her team of doctors more proactive in making her safe, giving her a secure airway and a way to receive nutrition long term. It was a good day in that way and I wish it had come sooner. But I think that was the beginning of the new us. And so it doesn’t feel like it happened to us. It didn’t end our lives. It ended those other people’s lives. For us, it brought us to life. That’s where we began so the grief of those other people doesn’t touch us as keenly. I can remember it. I can even bring up the feelings, but it’s not as…hopeless. It was simply the end of the life we thought we’d have, the life we thought was best. Now we know better. That this life really is a good one, the best one for our family.

Happy Diagnosis Day then. The day we finally had a clearer path to give Evie what she needed and the day our new selves began.

Umm…

So yeah, we’re home. Forgot to post. I knew I was forgetting something. Sorry, everyone! But yes, home. Doing well. Evie is thrilled to be back in her space again (as are the rest of us). She was actually discharged over the weekend, but we had an appointment on Monday, so we hung around town and had some (very much needed) family time.

Fishing, ice cream, and Barnes and Noble. So much normal!

Fishing, ice cream, and puppets and dancing (and taking a bow) at Barnes and Noble. So much normal!

We also stopped at the fire station close to our hotel to see if they ever gave tours. The girls were thoroughly spoiled.

Evie kept signing 'sit' and pointing to the fire truck.

Evie kept signing ‘sit’ and pointing to the fire truck.

So now we just watch her, monitor her hemoglobin if she starts bleeding again, and do blood transfusions if needed.  And hopefully stay home for a good long time. It’s been such an exhausting long year. Her first intussusception was in July and it’s been the most intense stress I’ve ever experienced since then. We’re all ready for some quiet and our normal level of stress.

Thank you again for all the prayers. And hopefully the blog is just a bit quiet for a while as we have a (relatively) boring, uneventful summer.

 

Hanging Out with the Birthday Girl

First and foremost, I want to thank everyone who sent cards and gifts for our special birthday girl. I am overwhelmed by the sheer number of people who took the time to make her day enjoyable. Friday morning was a bit rough and I thought we’d just go downhill from there, but then the cards and balloons starting arriving and we were able to take her off the morphine drip, she was so happy. It was the perfect distraction the day after surgery.

We’re still waiting for her bowels to wake up, but she’s comfortable and in good spirits. We even walked around the unit a bit and she showed off her jumping skills for all the staff. EVERYONE seems to know her now.

Alright, on to the pictures! I haven’t even gotten all of the cards opened and hung yet! It’s just crazy!

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Evie is FOUR!!!!

Can you believe it???? It’s not exactly the ideal setting for her 4th birthday, but she’s still with us and growing and thriving and we’re thrilled. Hopefully she’s not in too much pain today and we can have a little fun.

I had to make another video, of course, but I did it last week since I wasn’t sure if I’d have time with everything else going on. I think these two songs perfectly capture Evie in so many ways. Enjoy!

Here are posts from her first three birthdays if you want to catch up.

This Day Last Year

Evie is Two!

Three Years of Happiness