Verity Is on the MOVE!

 Verity has places to go, people to see, and things to DO! 😂🥰

It's been over 3 years since the "Go, Baby, Go" event when we got this car. At the time, Verity was SO tiny. She had to be propped in place with all kinds of pillows and things around her to keep her upright and safe. She had no idea what to do with the big red button. All these other kids who were in the same age range were zooming around in their vehicles...and we were running around bent over helping her go.

I had such mixed feelings. On the one hand, it was so fun and exciting to do this project, and our therapists from The Resource Exchange worked hard to get Verity approved so that she could get a car. But on the other hand, I wondered...what was it all for?? My tiny little girl had no idea what was going on. Developmentally as well as physically, I just didn't know that she would ever be able to use this thing.

But we kept trying. And Verity kept growing. And now she's over 4 years old and weighs 27 pounds, 12 ounces. She is almost 36" tall. AND SHE KNOWS WHAT TO DO WITH THE RED BUTTON!!! Granted, steering is a skill we will have to work on, lol. But the point is...Verity is on her own timeline. She will ALWAYS be on her own timeline. We celebrate every milestone, or every "inchstone" as I heard another parent say. Other trisomy kiddos may be walking or talking or eating orally or doing any other number of amazing things we were told trisomy kids will "never do"--and we celebrate with and cheer for every one of them. Maybe Verity will one day do those things, but for now? Now, we rejoice that she can sit in her little car and make it GO by pressing a big red button. 

To God be the glory, great things He has done! 

Verity's Village - An Update on Our New Nonprofit

Things are happening fast around here, and Mom (aka Beverly) is spinning lots of plates at once...meanwhile...Verity has it made in the shade!

If you haven't heard our BIG NEWS, we have started a nonprofit ministry! Born of a dream that began in our hearts in the midst of desperate times in the early months of Verity's life, Verity's Village has taken shape in this first phase as a way to offer hope, encouragement, education, and practical support to families who receive a life-limiting diagnosis (of any kind) for their babies.

Our dream is to CHANGE THE NARRATIVE surrounding genetic anomalies...

from heartache...

...to HOPE!

If you've been with us since the beginning of this journey, you know the heartache we experienced after receiving Verity's diagnosis. Even when we were privileged to bring her home from the NICU after 18 days, we lived in constant fear for her life--after all, she wasn't expected to make it to her first birthday. Chronic sleep deprivation plus the stresses of a military move and life as a homeschooling family with 9 children led to some pretty dark times, to be honest. 

And yet...through it all...God's enduring faithfulness shone in the darkness.

And now? Life isn't easy by any means, but it's full of joy and HOPE. (And by the way...that HOPE would be present even if the Lord had decided to take Verity to heaven. We don't have hope simply because she is alive but because her life is eternal, and we will all live in heaven with Jesus someday thanks to His wonderful, gracious gift of salvation.)

Save the Storks gave us a generous $10,000 grant to launch Verity's Village this past spring. Because of that, we have filed our articles of incorporation and are waiting for final IRS approval for our nonprofit status. 

Meanwhile, though, we have made some huge strides! 

• We run a private, online support group for those who have received a prenatal diagnosis, providing practical support, education, resources (such as those listed below), and care packages. 
• We've published a special pregnancy journal for moms whose babies have a life-limiting diagnosis. 
• We have also published a 30-day NICU journal.
• I'm in the final stages of editing the book I wish I could have read when I was pregnant with Verity, From Diagnosis to Delivery: What to Expect When the Unexpected Happens During Your Pregnancy. 
• We are spreading the word about the services we provide to families in these situations through any means possible! We have sent out approximately 85 care packages in 2021. 

I'm doing as much as I can over the summer because soon the homeschool year will be upon us! Verity's Village needs to grow, grow, GROW because we NEED to reach more people. The needs are great. This is a HARD journey, and many (probably most) families come to us heartbroken already and feeling alone, afraid, and hopeless. We are here to walk them through this difficult journey and help them with the hard decisions so they can find hope, peace, and purpose no matter what happens. 

Would you like to know more? Reach out! We'd love to hop on a Zoom or get together in person (if that's feasible) to tell you more about our mission and how we've already been able to support over 120 families. You can view our temporary web site also to learn more...Storks is helping us with this aspect of our ministry, and we are still working on our logo and brand guidelines. Once that's finalized, we can go forward with our very own web site.

Would you pray for us right now? If you'd like to be a prayer partner or even support us financially, please reach out. We'd love to chat with you!

18 Ways Verity Has Changed Our Lives

This is our FIFTH year to celebrate Trisomy Awareness Month! March is the third month, and as a trisomy condition means there is a third chromosome, it makes sense that March 18 would be Trisomy 18 Awareness Day! In honor of the occasion, here are 18 ways our sweet Verity Irene has changed our lives...

1. We are much more aware of the needs of individuals who are "different." Not only that, but we are also sensitive to the needs of parents and siblings of special-needs children. It truly does take a village to support not only those who have a special condition, but also their caregivers.

2. We are more patient. (In general. On most days. OK, really, this is still a work in progress...but Verity has furthered the progress!)

3. We are more compassionate. I love seeing my other children interact with Verity! (I sometimes wish the compassion went beyond Verity to each other, sigh...)

4. We have learned we can exist on an average of 1.7 hours of sleep...in an entire week. (But we are VERY grateful for Verity's CPAP, which has increased that average exponentially since she got it almost 2 years ago!)

5. We have developed lightning-quick reflexes in order to grab the suction machine, catch projectile vomit, or stop the feeding pump when we realize it is feeding the floor (or the bed or the carseat or...).

6. We've learned to navigate insurance, doctors' offices, MyChart, Relay Health, therapists, and an ever-changing calendar. We may not enjoy dialing those numbers, but we can make phone calls to get answers AND action.

7. We take nothing for granted...

8. ...And yet we exist in a type of holding pattern for "normal" as it is defined for the moment.

9. We are thankful to know and interact with an amazing community of professionals including home health care nurses, doctors, therapists, teachers, and more who help support Verity in reaching her highest potential and living her best life.

10. We are now firmly entrenched in the Trisomy Tribe, an amazing community of families all over the globe, all connected because of an extra chromosome, as we share joys and triumphs, griefs and agonies.

11. We have opportunities to share HOPE with others because of our own journey. 

12. In fact, Verity is THE reason we are venturing into the world of non-profits as we set up an official ministry to support families like ours! While it is very much a work in progress (to include a web site still under construction), we are excited to move forward and carry out this vision that has been on our hearts for several years now.

13. We have a new vocabulary, not unlike the months I was a new bride/Air Force wife learning the acronyms! Sats, pulse ox, CPAP, VSD, ECMO, AFOs, DME, and more...I never would have known what these were if it weren't for our and our friends' journeys.

14. "Accessibility" is no longer an abstract concept.

15. I can't necessarily speak for all my other family members...but personally, my prayer life has deepened.

16. We live in gratitude. Literally every day we thank God for the many, many blessings we enjoy.

17. We find joy in small things. (Verity's giggles and squeals are a near constant source of delight.)

18. Our faith is stronger than ever. We aren't living in denial--we know we may face unspeakable grief at any moment. But the God who has brought us through the difficulties of life this far is the same God who perfectly and wonderfully made little Verity, our precious gift wrapped up in Trisomy 18 packaging. We can trust Him with the future.

Trisomy Awareness Month: "A Few of My Favorite Things"

It's that time again! Last year we were kicking off a worldwide pandemic when Trisomy Awareness Month arrived. For heaven's sake, let's not have any more discussion about THAT, lol. Moving right along to Trisomy Awareness Month 2021...

A trisomy mom, Chelsea Spoelker, provided some graphics and prompts for sharing this month. The graphic above portrays one of the most commonly noticed characteristics of Trisomy 18 babies: their clenched fists. Verity's fists were very tightly clenched at birth, but with gentle stretches and therapy, her hands are much more pliable now--without splints or surgery.

You can see her overlapping fingers & clenched fist here.

Those who have followed our journey from the beginning have already read or heard about our diagnosis day, the pregnancy, the birth story, coming home, etc. So I have chosen to pick out some of the topics Chelsea suggested and share in the form of blog posts rather than social media posts, which are here today and gone tomorrow for the most part! I have loved seeing my Trisomy Tribe light up Facebook and Instagram with pictures and stories of their sweet babies! I truly feel that awareness and education have spread so much since we first got our diagnosis 4 1/2 years ago.

For today's post: 

A Few of My Favorite Things

Where to start?! As with all my children, I love so many precious, unique things about Verity. Here are just a few...

• Her wild hair that has a mind of its own
• The little "notch" on the right side of her mouth. (There's also the teeniest, tiniest pin prick of a not-quite-big-enough-to-be-a-dimple "hole" next to this notch. I have no idea if there's a technical, medical term for this unique feature, but I don't care. I love it.)
• Her cute little elf ears. (They also have "notches" along the lobes.)
• Her happy squeaks and squeals.
• The way she smiles and laughs when she sees Daddy.
• Her joy in simple things...like a birthday balloon that is starting to sag but still captures her attention.
• Her sweet innocence. She knows no evil. She is completely, utterly dependent on her caregivers, and yet she knows no worry or concern that her needs won't be met. She loves and is loved unconditionally.
• Her generally content demeanor. I remember when we were desperate to help her find relief in the early days, uncertain why she was so unhappy. And now...it's rare that she is NOT content or happy. 
• The way she watches the world go by when we are riding somewhere. (She loves her bus rides to and from school and also enjoys being in the van with the family.)
• Her impish grin when she knows she's playing a silly game or being a stinker!

I've realized that some of the answers I would give touch on other topics, so I'll close for now. I hope you've enjoyed this list of a few of my favorite things about our Verity Irene!

Feeding Tube Awareness Week

It's that time again: Feeding Tube Awareness Week! If you know or care for someone who has an NG tube, OG tube, G-tube, J-tube, G-J tube, or any other combination of letters + tube, chances are you are already well acquainted with the Tubie Olympics! Some of the highlighted events include:

• The Emergency Button Change: how quickly can you reinsert a button after it has come out of your child's body? OR how quickly can you insert a new one upon discovering the balloon has sprung a leak?! Hurry! You have a short window of time before you have to pack everything and everyone up and get to the emergency room! But no worries: if you aren't quick enough, there's always the surgical option!
• Speed Clamping/Unclamping: When giving meds or water flushes, don't forget to clamp the extension tube BEFORE inserting that syringe into the med port! Otherwise you may find yourself entering an unexpected water event! Clamp, insert syringe, unclamp, push the water or meds, clamp, remove syringe and replace the cap. Even experienced parents sometimes forget to clamp/unclamp at the right moment. But no worries: a well-timed spray of formula, meds, or water is a fabulous reminder to do it right the next time! A secondary event involves remembering to unclamp the extension tube prior to starting the feeding pump. (See notes on "Silencing the Blasted Feeding Pump Alarm.")
• Feeding the Bed (or the Floor or the Car Seat or...): This event will have you springing into action to stop the feeding pump before any more food ends up, well, everywhere besides the subject's stomach. Maybe the tubing slipped out of the feeding port. Maybe the subject thinks it's hilarious to pull on the tubing or rolled over it in the case of an overnight feeding. (If this is the case, be prepared for an Emergency Button Change BEFORE dealing with the mess on the bedding.) Mental acuity is key as you assess the most important action to take first and then attempt to calculate how much food has, in fact, NOT been included in this particular feeding session.
• Silencing the Blasted Feeding Pump Alarm: Whether drawing attention in the middle of a church service or waking the dead in the middle of the night, this event pairs the need for quick reflexes with the inescapable desire to JUST MAKE THE NOISE STOP. Perhaps the amount of food in the bag was miscalculated, or perhaps the feeding bag got tipped so that air bubbles are in the line. Or maybe the alarm is going off simply because you forgot to unclamp the line to allow the food to flow through the line. Whatever the reason, the feeding pump is letting you know that there is either NO FOOD or NO FLOW, and you are responsible to fix the problem. Add more food or formula; prime the line to remove the air bubbles; and restart the pump...AFTER all ports are closed off and you have unclamped the line. 

I hope you've enjoyed this quick rundown of the Tubie Olympics! In all seriousness, we are so grateful for the technology that allows us to feed our Verity--without her G-tube, she would not be able to sustain herself. We are grateful for the supply company that sends us organic, whole-food formula, feeding bags, extension tubes, G-button kits, syringes, and any other supplies needed to feed our special girl.

What events are YOU an expert in?! What events did I leave out?!

A Special Pregnancy Journal

Recently I started a private support group for mamas who receive a prenatal diagnosis. In putting together resources for them, such as a place they can access medical research for themselves and their health care providers (who often don't have personal experience with the kinds of diagnoses the parents receive for their child), I realized there was absolutely nothing out there for those mamas in the way of a pregnancy journal. All the ones I found were happy, happy, joy, joy. Having been through a pregnancy fraught with anxiety and fear over whether we would meet my daughter alive or not, I decided it was time to create a special journal that would address the different aspects of this unique situation. While some aspects allow mamas to focus on the joy of a new life and the positive aspects, other sections help them work through difficult topics such as what in the world to do about a baby shower and how to formulate a birth plan.

The journal may be purchased here (where you can also get a sneak peek at the inside by clicking on the image) and would make a wonderful gift for anyone you know who is devastated to receive a prenatal diagnosis. I would love to get it in the hands of genetic counselors, palliative care teams, pregnancy resource centers, and other professionals who work with women who are carrying fragile babies. If this is you, or if you know of someone who ministers in this capacity, would you reach out? We would be happy to discuss options for bulk ordering to make this resource accessible to others! 

Contents include: 

• Journaling pages plus prompts to help you remember details
• Space to record your baby's diagnosis and unique needs
• Appointment trackers
• Ultrasound photo keeper
• Ideas for a baby shower
• "Letters to My Baby" section
• Birth Plan Brainstorming
• Hospital Checklist
• And much more.

Worth It

Two of my dear friends in the Trisomy community have had to say goodbye to their little girls in the last couple of days, and devastating doesn't begin to describe it.

I'm not going to lie...this journey is not for the faint of heart.

You learn to love and let go and it never, ever gets any easier.

You get close to families, follow their journey, find hope and light and joy and encouragement.

And then in the blink of an eye something happens...

And you're crying your eyes out in your closet, heart-wrenching sobs because a child who was doing so well is suddenly with Jesus and a friend's arms are empty and her heart is aching.

You know in your heart that heaven is where our children are healed and made whole for eternity, that they are dancing with Jesus and waiting for the day we will be reunited.

But.

The ache is still there.

And though we get pretty good about pushing the fear and the worry behind us, living in the moment and appreciating what we have, it's times like these that remind us...

Our child could be next. 

I hate that this is the case. I hate that I can't make it better for anyone else on this journey. I hate that no one can give us any guarantees. I hate that in the 4 years I have known what a rare trisomy diagnosis is and what it means, I have watched literally dozens and dozens of little ones leave this earth.

It hurts. A lot.

And yet...our lives are richer BECAUSE we are part of this community. The joys and triumphs and milestones--they are all the sweeter because of the difficulties. The friendships and community we've forged are so precious and valuable and LIFE-giving. 

To my friends who are new to this life, to those who have just received a diagnosis for their little ones...I hope seeing posts of loss and sorrow do not cause you too much angst and grief, although it's understandable that they do. I hope you see the hope and the beauty, the joy and the sacredness of this calling we each have, the call to love and care for a vulnerable little one. Because it's there, it truly is! 

Lots of hope. 
Lots of joy. 
So much love. 
So many precious memories and moments.

It's worth it. So very, very worth it.

Mary's Prenatal Diagnosis

Christmas 2016 was not the most joyous in my collection of yuletide memories. I was "great with child," but even more burdensome than my cumbersome belly was the weight of anxiety heavy on my heart and mind. We were two months away from our due date with Verity (FT18), and though I had learned much in the couple of months since our diagnosis, I felt I had absolutely no idea what to expect in the days and weeks ahead of us.

This year, we are grateful and blessed to be celebrating our 4th Christmas with Verity Irene. And while our everyday life now is characterized by an unexpected sense of "normalcy," I will never forget the uncertainty and angst that blanketed our holidays that year.

I'm sure Mary felt those emotions as well! She had a "prenatal diagnosis," if you will--it was revealed to her that she would carry a special child, too! Can you just imagine the uncertainty SHE felt?! Where and when would she deliver her baby? What would the outcome be of a pregnancy that from the outside looked to be illegitimate? How would she attend to the special needs of a child who would be like no other?

God's heavenly purposes are carried out in each and every individual, including the precious babies who have an "anomaly." It is true that some are called to heaven before even taking a breath on earth. And it is true that some get to experience life only for a short time. Our thoughts and prayers are with those families who are mourning and missing those babies. And we continue to pray for the ones who are still growing and for the mamas carrying them, waiting for the next chapter in their own lives to unfold.

From the Jacobson family to all of you--I wish you a merry Christmas. May you savor the quietness of the season and experience true rest...may you know the grace and peace that only comes from the real reason for the season.

P.S. If you or someone you know has received a prenatal diagnosis, I'd love to offer encouragement and support. 

From Diagnosis to Delivery - A Resource for Moms with a Prenatal Diagnosis

It's been just over 4 years, but I well remember that difficult season of life: getting a phone call from my doctor and learning the baby girl growing inside me had what was considered a life-threatening diagnosis (Edwards Syndrome, or Trisomy 18). The following days and weeks were a living nightmare. My husband and I prepared for our baby's burial, and I was pretty much a weepy, emotional mess. Thank GOD for online connections! After about a month or so of feeling overwhelmed by negative information, we were introduced to online resources that actually showed REAL families living with children who had the same diagnosis. My eyes were opened to the positive stories of hope, and I began to turn my heart toward the idea of a different outcome than I had been led to believe initially. 

Of course, this also meant I had a whole different set of questions to address! The learning curve was steep, but as I look back, I can see how incredibly far we have come. Now our Verity is almost 4 years old, and our family absolutely adores her. I just cannot imagine life without her! But I will confess I was terrified to be the mother of a special needs child, especially when I already felt overwhelmed being the mother of 8 other children. 

From the moment of our diagnosis to the beautiful experience of Verity's delivery, my pregnancy was an emotional roller coaster. And beyond delivery came more learning. I won't say it's an easy road, but I wouldn't have it any other way. And because of the JOY and HOPE we have as a family (which ultimately comes from Jesus), I am now in a place where I am able to offer a bit of wisdom and experience as a resource for moms who have a prenatal diagnosis and are drowning in a sea of emotions.

We have a new private support group for those moms! I also have a free guide, From Diagnosis to Delivery. Please help spread the word! This is a journey best traveled with loads of support!

Clubfoot Clinic Check-in

It has been over a year since we saw our orthopedic team, and so we headed to the specialty clinic early Tuesday morning. Our routine is to get a hip x-ray as well as examine Verity's feet, which were clubbed at birth. (You can read about the early treatments when she was tiny here and see some photos of the progression here. And this is the boots-and-bar phase we were in for awhile. Goodness, she looks so teeny tiny in these early blog posts!)

So, we will give an update on her feet first. I don't have a photo handy of her AFOs, which she has had for nearly a year now, but she has definitely outgrown them. (AFOs = ankle/foot orthotics.) She got the best use out of them when she was weight bearing, so in a stander or gait trainer or the like. When sitting, unfortunately her right foot (the "problem" foot that won't flex all the way) would sometimes get red spots, even though we've always been careful to take them off regularly and check. We had noticed her right ankle seemed just a bit tighter, and the measurements from the PT at the clinic confirmed this.

The good news is that overall, there really isn't much change with her feet, other than growth, obviously! So we have a new prescription for a new set of AFOs. The last ones took at least 3 trips to Hanger Clinic to get "right," and they still maybe could have been adjusted even more, but they worked! And the frayed velcro straps and scuffed bottoms were definite proof that we used them daily!

The doctor does not feel he wants to do foot surgery anytime soon, as long as we can continue getting AFOs that fit properly and allow her to work on weight bearing. This wasn't a surprise, as he had said he felt he had done as much as he could with the last tenotomy surgery (tendon lengthening for the Achilles). 

So that leads to the hips. Dr. S has monitored her hips since we first moved to Colorado in 2017. Verity first saw him when she was about 8 months old. Hip dysplasia is common for our little ones, and while Verity's tendons did need a release in conjunction with the November 2018 tenotomy, her hips have looked pretty good her whole life. 

This x-ray, though, showed a bit of a possible concerning trend. Because Verity has not been able to bear weight, isn't crawling, standing, walking, etc., her hip socket hasn't quite developed right. So on her left side, the femur doesn't necessarily stay well in place! For now, we have the hip abduction brace, shown below, which really is not as uncomfortable as it looks. It's soft and easily adjustable.  In fact, we were all pleasantly surprised when Verity calmed down and almost seemed soothed when we put her in it! (We wondered if perhaps it feels almost like being swaddled feels to a baby?!) She took a nap yesterday afternoon while wearing it. However, since we did not have a nurse on duty at night, we are going to play it safe. As you can also see in the photo, Verity often sticks her fingers in her mouth (which, by the way, is a nice developmental step--she usually seems to be rubbing her gums where teeth are coming in). While she has come a loooong way from a year ago when the only reason she put her fingers in her mouth was to stimulate her gag reflex, she still on occasion does manage to gag herself. With her CPAP mask on at night, we don't want to chance this happening before we can fully wake up and realize what's happening! Since her preferred sleeping position is on her right side, we will utilize the brace as we can during the day and during the occasional night when we do have a night nurse.

While Dr. S has been a pretty good provider overall for us, the way he worded some things seemed to indicate (probably unintentionally) his opinion regarding surgery should Verity need it down the road. When talking about her hip issue, he said if the femur comes out of socket and isn't able to be put back in, OR if she starts showing signs of pain, then--for any other child--surgery would be a given. But his opinion of the surgery seemed to be based on expected outcomes for the patient. His example, cerebral palsy clients, referred to the fact that their expected life span is much longer than for Trisomy 18 patients. Because of my tendency to give people the benefit of the doubt, I'd LIKE to think that his seeming reluctance to consider surgery for Verity may be based on what happened during her last surgery with him. Perhaps her reaction to fentanyl (which is now listed as an allergy on all her medical records) has made him gun shy to put her under again.

But...if our girl gets to the point where she needs surgery, we will make sure she gets it! And if Dr. S is reluctant to do it, we will find someone else willing to go forward. However, I'm hoping it will be a non-issue!

Autumn 2020 in Photos

Here are some representative photos from September through November...starting from the most recent and working backward because that's apparently how my phone and computer are working today, lol. Enjoy!!

Having a BALL in our swimming pool
ball pit that we keep in the basement!

Happy Thanksgiving! 

Look how open and flat her hand is!!!
 Remember her clenched fists at birth?!

Practicing sitting...we still can't leave
her because she is totally unpredictable,
 but she's getting there!

Resting before our big day of back-to-back
 appointments (details in previous blog post).

Our little Trisomy Rule Breaker
 enjoys playing in her perimobile device!

Snuggle time with Grandma J

Daddy took the kids to the pumpkin patch.
The corn pit was a favorite place for Verity!

This is the first day with our new perimobile device!
 Many people helped us out with our fundraiser.

At preschool, Verity has the opportunity
 to use lots of cool toys.

More practice with sitting unassisted...
this little piano is a huge motivator,
as Verity enjoys the sounds she can make on it.

November News

2020 seems to be flying by! I guess that's a good thing for most of us! Here's a quick rundown of Verity's recent medical checkups...

UROLOGY:

You may remember poor li'l Verity had 6 UTIs in the February - September time frame. After her last one (diagnosed 9/10/20), following her 10-day stint of antibiotics, the doctor put her on a prophylactic dose (preventative) twice a day. When we saw the urologist on November 18, things were looking good! He dropped her prophylactic to just once a day, with a slight adjustment for her weight gain. Verity's weight is now at 25 pounds, 12 ounces, length just about 35 inches. Since her recent abdominal scans looked good, we are all content with not having any more immediate follow-ups, just returning to our regular schedule of checking in with him every 3-6 months unless we somehow have another UTI.

NEUROLOGY:

This consultation came as a result of Verity having her first seizure in September, which coincided with the onset of her 6th UTI. To our knowledge, there has not been a repeat of this incident--and she is very carefully monitored day and night (at least with machines, even on the nights we have no nursing and rely on our parental instincts and alarms!). Basically, the neurologist told us Verity gets a big fat PASS because of her genetic condition PLUS having the infection present with the one event. This means she isn't going to jump into putting Verity on any medications, which is just fine with us. However, we did discuss in detail what to look for and what to do if something like this happens again. Also, she gave us a prescription for a rescue medication to have on hand (one for at home, one for our diaper bag) in case there is an emergency and Verity has a seizure she doesn't come out of within five minutes. Just having that sets my mind at ease, because even though we haven't seen any evidence of seizure activity, we know it can become a severe problem for many Trisomy kiddos.

UPCOMING APPOINTMENTS:

Orthopedic/Clubfoot Clinic

Opthalmology 

Gastro/Dietitian

Thank you for following our journey and caring about our girl!

The Good, the Bad, and the Ugly

Many good things are happening in Verity's little corner of the world! Let's celebrate!

PRESCHOOL! Verity gets to ride the bus Monday - Thursday and join her little classmates for morning preschool. We are so thankful she can do this in person, as we have seen good things happening for her development. She does get tuckered out and once even fell asleep in class, ha! But the experiences she is having and interaction with her teachers and classmates are all having such a positive effect on our girl. We are grateful for our nurses who accompany her there and back and give us great reports and photos!! 

CRAWLER--after sitting in the NuMotion office for NINE MONTHS due to insurance issues (hmm, enough time to grow a baby), a beautiful Creepster Crawler is finally OURS! We use it to help Verity do some weight bearing in the quad position. She has gone from utter dislike to tolerating and even seeming to "enjoy" (that may be a little strong) the device. The ultimate goal, of course, is to help her understand that SHE CAN move herself! We are still working on sitting up on our own as well. I don't yet have a picture of her in the crawler, but here's a photo of her sitting without our support doing one of her favorite things: playing her little piano! We do have to watch her carefully, as she can hurl herself out of the chair unexpectedly, but it's so great to see her making these strides. 

Other developmental things:

• Blowing bubbles...spit bubbles, that is!
• Smiling and laughing spontaneously
• Interacting with her toys on her own
• Responding to her siblings and enjoying play time
• Surpassing 24 pounds! She's still teeny, but man, is she getting SOLID! She's so strong and healthy!
• Using her core more and more...she's close to sitting up on her own and COULD if she wanted to!

Unfortunately, we must deal with some bad things as well...mostly recurring UTIs for our poor girl this year. We are treating the 6th one! Different bacteria have grown out at different times. We've done some testing (VCUG and abdominal x-rays, plus her regular renal ultrasound). She still has kidney reflux on her right side, but nothing that suggests we need to do any kind of surgery or procedure. After this current round of antibiotics, she will do 2 months of prophylactics (low dose of preventative antibiotics). And I plan to get pretty aggressive with our home treatment/preventative plans as well.

And the ugly?

Well, I probably don't have to tell you the ugly part. Our nation is deeply divided. I don't even recognize this country anymore. Truthfully, I've blocked out many of the things that rile me up, choosing to focus on what needs my immediate time and attention. That doesn't mean I don't pray desperately for our nation, for the leaders current and future, and for the citizens of this country. 

It DOES mean I soak up all I can from life with Verity...

All the snuggles. (She's often rather affectionate!! We take it in when we can, because it doesn't last long!)

All the love.

All the laughter.

All the sweet innocence of a precious girl who is sheltered from the brutal realities of a sinful, fallen world.

A New Family Member

 

I suppose it had to happen sooner or later...one of Verity's siblings has flown the nest! Charis, our oldest daughter, married the love of her life on June 13 in a beautiful wedding on our wooded acreage. We welcome Isaac to our family and wish this lovely couple all the best! We are thankful indeed that they live in the same city, so we are able to see each other fairly often despite everyone's busy schedules. 

2020 Hindsight

My Facebook memories today showed me a rather raw, lengthy, "how I'm REALLY doing" post from 3 years ago. Verity was just about 3 months old, and while we had adapted for the most part into our "new normal," clearly our life was not easy. In fact, as I read over the words of that post, my 2020 heart went out to my 2017 self.

Oh. My. Goodness.

How did we survive those early months? That first year?!

If only I had known back then where we'd be in 3 years. It would have been so incredibly encouraging to get a glimpse of our family now. If I could have time traveled from then to now, I would have seen the following:

• First and foremost, Verity is ALIVE and THRIVING! She is living her best life, surrounded by so many people who love her and help her achieve more than we could have imagined when she was a tiny, unhappy baby.
• Also important: Verity now sleeps! Through the night more often than not! Her CPAP mask and machine have been a game-changer for all of us.
• We have HELP! Wonderful nurses who have become like family. (I continue to hear horror stories from other medical moms...but praise the Lord, we have been unbelievably blessed.)
• Our family no longer is moving from place to place with the military. Ted is retired, and we are homeowners living in a dream house on 3 acres of wooded property.
• My other kids are thriving. Not that we haven't faced challenges--some of which have been incredibly painful and significant. But by God's lovingkindness, our kids are growing in the grace and knowledge of the Lord Jesus Christ, to whom we cling daily for new mercies and strength every day.
• I no longer feel anxious or depressed, and I don't even remember the last panic attack I had. (Though medicinal options were a possibility...I found significant help with some natural solutions, and I'm so very grateful for what I learned during those dark, difficult days.)
• I feel closer than ever to my husband and to my Savior. (This. Is. EVERYTHING. There was a time I feared for my marriage and even my own self. It's a story for another day, perhaps...)

Again...I'm not saying that life is perfect. I AM saying I am joy-filled, content, and full of hope for the future. And since mamas usually set the tone for the family, I think it's fair to say the dynamics of our household are generally much more positive and far less stressful than they were 3 years ago.

I know it's not for us to see the future...but oh, how glad I am for the ability to look back on the past from wherever we are in the present. Seeing how circumstances change over the course of time is such a help for framing our responses to circumstances that seem endless and unchanging...

Father God, thank you that YOU are unchanging! Thank you that your love never fails. Thank you for your purposes, which are good and eternal. May we be lights, shining for you regardless of whatever we are facing Today. Jesus, you are the same yesterday, today, and forever! Praise you!

Trisomy 18 Awareness Day...in the Midst of a Pandemic

March 18, 2016. 
I had never heard of Trisomy 18, nor had anyone else in my family or circle of friends, and while I was somewhat familiar with Down Syndrome, Edwards Syndrome was certainly not on my radar. (Nor, I might add, was having another baby.) On this day, I was likely homeschooling 7 of my kids while chasing baby Rhema around the house, trying to keep her out of mischief.

March 18, 2017.
Verity Irene was a tiny little mite who had been home from the hospital less than 24 hours after spending her first 17 days of life in the NICU. She had an NG tube she managed to dislodge a few hours after this photo, resulting in a frantic trip to the ER that night. Good grief. We hadn't even made it a whole day and already there was chaos! How in the world were we going to manage caring for this fragile, precious little girl AND keep up with our 8 other kids?!

March 18, 2018.
Verity Irene passed a huge milestone: she turned ONE YEAR OLD! Statistics had told us only 5-10% of Trisomy 18 children reached their first birthday. I'm thinking those are old statistics...but regardless, who cares?! Does this look like the face of a girl who gives a flying fart what statistics say?!

March 18, 2019.
Verity has now passed her 2nd birthday. She's no longer a tiny, fragile little baby, though she is small for her age. She is developing at her own pace, and we cheer at her every accomplishment. The world might not award much significance to her achievements--or even to her very life--but we know without a doubt that she is a gift from God. She enriches our lives and brings us joy in a way only she can.

March 18, 2020.
Verity Irene, like ALL of our Trisomy friends, is clearly a Trisomy RULE BREAKER!! At 3 years old, she has blessed our family and a growing circle of friends just by being who she is, the unique person God created  her to be.

It is a strange time we live in to be sure. As I type this post, Trisomy Awareness Month has been overshadowed by COVID-19. I am not fearful, per se, of the virus invading our home, although I acknowledge it could definitely happen. I choose not to live in fear, but we are definitely taking precautions. Of course, some of those are not of our own design, as schools have shut down, my oldest daughter's university campus is closed for the year, churches have switched to livestreaming, appointments are pushed farther down the calendar, and so on.

But here's the thing on my mind during today, my fourth Trisomy 18 Awareness Day: IF my child gets sick (whether due to COVID-19 or another illness), and IF we need to get her into the hospital...WHAT IF the hospitals are overrun? What if by the time we get triaged, there aren't enough beds or equipment for what my special girl needs?

And even if it isn't Verity, WHAT IF this happens to our little Trisomy warrior and princess friends??

WHAT IF doctors find themselves having to choose WHO gets life-supporting equipment, time, effort, and resources?

What will happen to those society has already labeled "incompatible with life?"

THIS is why I think Trisomy Awareness Month is important to talk about, even though our newsfeed is already saturated with articles about the virus, the economics, the responses, and whether what we're doing is enough or is overkill.

Wait. "Even though??" No, ESPECIALLY since we are in the middle of a pandemic! This is ESPECIALLY why I think bringing awareness to some of our most vulnerable citizens is important.

And so here I am, standing in my little corner, washing my hands and keeping my family at home, shouting from my computer.

Please...please. Please think of people like my precious Verity, like her friends, and like their grandparents or others who are especially vulnerable. Please don't scoff at recommendations or skip out on washing your hands.

Let's get through this together, OK?

She is THREE!!!

We had a wonderful birthday celebration on February 28, 2020, rejoicing in the THREE years God has given us with Verity Irene! We had an open house celebration, which...in hindsight...probably wouldn't have happened if we had known we'd be under Coronavirus quarantine-type measures shortly afterward. But praise God, all our friends and we are still healthy, and so we are grateful that we had the opportunity to celebrate with friends and family on Verity's special day! Verity wore 2 different party dresses after "anointing" one of them...so much for trying a taste of her birthday cake?! Oral eating may never be a thing for our girl, but we are so grateful she is HEALTHY and HAPPY and that we get to share life with her, because she is most definitely

Compatible

with

LIFE!!!

A Year in a Post

Wow. It's been over 13 months since I wrote a post on this blog! How easy it is to pop a photo or video on Facebook or Instagram and share a slice of life. And yet...how fleeting it is. I miss journaling about the intricate details of our life. I miss being more thoughtful and processing precious moments.

How has it been a year since we celebrated Verity's 2nd birthday?! This evening, on the eve of her 3rd birthday, I decided to dust off the cobwebs from this blog and look back over the past 12-ish months to see how far we've come! Ready?! Here we go!

January - February 2019
Verity got 2 piggie tails for the first time! Finally enough hair! Also a new set of AFOs to help hold her feet in a flexed position following her tenotomy surgery in November 2018, after which she wore casts for several weeks. These AFOs were stinkin' cute, but unfortunately not very functional. We went back multiple times to make tweaks, and at one point we had 3 therapists involved with the orthotics guy, who is a genuinely patient and good man and has worked tirelessly with us to get things right! The third pic below shows Verity the day of her bronchoscopy, a sedated procedure which allowed the ENT and pulmonologist a good look at Verity's airway and lung "juices." We learned that Verity's anatomy was not causing her OSA (obstructive sleep apnea), i.e. the ENT did not need to remove tonsils or adenoids. We also learned that while Verity still had problems with emesis, she was NOT aspirating into her lungs. Hooray! But boo...Verity did have to start prophylactic antibiotics after having a third UTI in several months.

2ND BIRTHDAY! February 28, 2019
A celebration with our church family after the service. Our little unicorn got a special handmade unicorn!

March, April, May 2019
First haircut, ball pit (we graduated from a cardboard box to a plastic swimming pool that we can pull out and play with in the house), therapies, park days, Easter (and naps), getting arm braces to help with weight bearing, and another sleep study, which resulted in us getting a CPAP set-up for Verity in early summer. It has made SUCH a difference for her (and our!) quality of sleep!! We got another good report from the cardiologist, who only sees Verity once a year now.

JUNE 2019
We had a quick road trip to Iowa to drop off our son for a mission-type camp and then visit friends for a few days. Back home, we saw Verity's urologist for a check-up after her regular abdominal scan (which looked fabulous), and he stopped the antibiotics. Hooray! The photos below are a few of my favorite pics from our summer photo shoot with Melissa Pennington, which took place in Iowa:

JULY - SEPTEMBER 2019
Honestly, I don't remember a lot of detail from this time period, mostly because the property management agency managing the house we were renting informed us that, despite telling us less than 24 hours earlier we could renew our lease, instead served us a 30-day notice. Long story short, we busted our tails to get out of that house and into a God-provided dream home in the woods! What could have been an incredibly difficult ordeal for our big family turned out to be an opportunity to put roots down in a location we deeply love (Colorado). Verity was blissfully oblivious to our stress, as you can see in these random photos from this time period...others shown are big brother Tobin (helping Verity fold her hands during prayer time) and our sweet T18 friend Ember, who came through our neck of the woods over Labor Day weekend!

OCTOBER - NOVEMBER 2019
Visit from Grandma and Grandpa K in October...we enjoyed a day at the pumpkin patch (pictured: Verity rolling in the corn!) before the first snowfall two days later! We started the process of learning what our options are for preschool and therapies once Verity turns 3. The picture of Verity and me in purple was taken during an initial evaluation with the Child Find coordinator in our school district. (We wore purple...despite our smiles, we remember and honor our friend Beckett Hope, who unexpectedly went to meet Jesus in early November.) Verity is shown next in her CPAP mask at night, with a little silk sleeping cap made by one of her nurses since Verity had rubbed a bald spot on the right side of her head (combo of preferring to sleep on her right side + CPAP mask). The bald spot is still there, but smaller, and not nearly as noticeable! Another big event for our family: Verity's daddy retired from the Air Force after 22+ years of service! Having been told that in order to stay on active duty status, we would have to relocate our family, my husband decided enough was enough. It's been a good run; we are proud to have served our family; but it's time to grow some roots! Verity was a huge part of that decision. She is stable with caregivers, therapists, and specialists who know her history and are invested in her well-being. Additionally, we have kids graduating from high school who have been dragged around the world their whole lives, and we are thankful we can give them a place to truly, finally, call HOME. Spending Thanksgiving with all our Colorado family was especially sweet--our first Thanksgiving in our new home, with Ted officially retired. God is good.

DECEMBER 2019 - PRESENT
The ponytail photo I thought was a fun comparison to the first one of this massive post with her two teeny ponies. She's grown a bit, and so has her hair!! Christmas was so magical this year...Verity really engages more with her surroundings, and she stared at the Christmas lights, absolutely mesmerized. When lying on the floor near the tree, she managed to scoot and wiggle her way underneath the branches, where she could play with the lights and tree itself. The other pictures are a slice of life...she's not fond of therapy, but she does occasionally bear some weight on her legs! She isn't yet sitting up completely by herself for more than 30-60 seconds at a time, but we know she COULD if she WANTED to! She isn't officially crawling, but she can maneuver and roll around. She has a Kid Walk on loan, which allows us to get her standing in her AFOs, and then she is free to make it move. (I'll try to get a video, but that will have to be posted on Facebook.) I know there were a lot of appointments the latter part of 2019 as we crammed things in before Ted went off active-duty status. Nothing major happened or changed, though we did start patching Verity's right eye for longer periods. (We started doing that in May when we noticed her left eye getting a bit lazy.) She continues to grow at her own pace, finally breaking past 20 pounds and measuring about 32 inches. We continue to work at increasing her G-tube feeds slowly.

Without a doubt, our girl is living her best life now! Lord willing, I will chronicle the details of this year's adventures here on our blog more faithfully so we can have concrete details to refer to in the future when today's memories grow fuzzy. Meanwhile...I think it's telling that I did set aside a medium which provided such needed outlet during a traumatic time--immediately after our diagnosis through the steep learning curve of the months that followed. We got caught up in the daily routines of life...in fact, we've taken our life for granted, something I swore I wouldn't do. Oh, we have had harsh reminders, to be sure. More little ones went to heaven last year--for me personally, the losses of Kace and Beckett were probably the most difficult, but it's NEVER easy reading about another child with a Trisomy condition who leaves parents, siblings, and friends behind. I always squeeze Verity tightly, even when she wants to wiggle away from me. But then more time slips past, and I lapse into the ins and outs of our busy life. Oldest daughter is getting married this summer; oldest son is graduating from high school. Our 4th child became a teenager today, and my little ones...aren't quite so little anymore.

I guess it's all I can do to cherish what I can, when I can.