My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Sunday, January 20, 2019

Verity's Next Big Thing

Verity's tenotomy surgery and ensuing cast (and cast removal) adventures seemed to dominate our November and December posts in her group. So not too many people know about our visits to her ENT and the sleep doctor in mid to late December, a long-awaited follow-up to the sleep study she had in September.

Immediately after her study was over--as in, that very same afternoon--we received a phone call from the nurses on duty who had read over the report by the respiratory therapist who observed Verity overnight. The study still indicated severe obstructive sleep apnea (OSA), and we were instructed to continue administering oxygen via nasal cannula at night or during naps as needed.

This was somewhat surprising news: Verity's sleep patterns seemed much improved, and she didn't exhibit any of the typical signs of OSA such as snoring. We had thought reflux was the culprit of the obstruction from months past, and with the start of the continuous feed and significant reduction of vomiting during January through the summer, we thought we were on the right track.

Interestingly, though, as we started monitoring Verity with the pulse oximeter and having oxygen at the ready, we noticed that she either had a number of nights in a row during which her saturations would be in the high 90s without oxygen, OR she would have noticeable snoring and need even more oxygen than originally recommended (only 1/32 - 1/16L). We resigned ourselves to having to wait for more information, since the "soonest" they could get us in to see her doctors was December, nearly 3 months after the sleep study! Meanwhile, we were grateful for a fairly consistent night nurse schedule as well as a friend who filled in (and still does fill in) to give Verity care and monitoring during the night. (As an aside, nowadays Verity does need oxygen almost all the time during her naps and at night. It can fluctuate between 1/32 - 1/8L, only needing more if she is fighting a respiratory illness, which, thankfully, has only happened a couple of times this season, and without a hospital stay! Verity does snore pretty substantially, fairly often, though positioning does affect this of course.)

So our first respiratory-related visit in December was with the ENT, who did a quick upper airway scope through her nose right there in the office, revealing nothing other than inflammation from reflux. (That answered my question of whether reflux was still an ongoing issue--clearly it is, even though we don't always see it coming OUT.) He did decide to put her on some nasal drops (Flonase) to help with some swelling to see if that would help (it hasn't noticeably). And then he said we would do a bronchoscopy (evaluation of the airway) to take a closer look at what is causing the obstruction.

A week later we saw the sleep clinic doctor, and she agreed with the ENT that a pulmonologist should be on board with the bronch, so together they have coordinated their schedules for the procedure, which will be while Verity is fully sedated. If the ENT sees something that can be corrected surgically (enlarged tonsils or adenoids, for example), he will do the surgery while Verity is already sedated. Meanwhile, the pulmonologist will check Verity's lungs, taking fluid samples for examination/culturing. (This is called a bronchial lavage, or lung washing. Sounds fun, eh?!)

The plan is to repeat a sleep study at least 6 weeks following the bronchoscopy to see if her OSA has improved. If it has not, then we will move toward fitting her for CPAP. Since Verity is still so tiny, the sleep doctor is reluctant to make that our first step...or rather, our next step, I guess, since we have been addressing this issue for over a year now.

These procedures and surgeries are pretty common in the Trisomy community, as our kiddos are smaller than usual but their tonsils and adenoids may continue to grow at a more "normal" rate. Still, it's always concerning when our little ones must undergo anesthesia--thankfully we have now noted CLEARLY in Verity's records that she is not to be given fentanyl!

Please pray with us for the February 5 procedure and recovery afterward. Thank you in advance!!

Tuesday, January 8, 2019

How Little We Knew!

As we begin a new year and look forward to Verity's 2nd birthday in less than 2 months, I can't help feeling rather sentimental. Three years ago I had no idea what kind of a roller coaster journey lay ahead of us. Two years ago I was pensive and terrified in the final stretch of a precarious pregnancy. One year ago I was astonished and delighted that we were approaching that huge milestone, The First Birthday, which we heard only 5-10% of Trisomy 18 babies ever reached.

I thought my heart was full being the mother of 8 wonderful children. Now? Now it's absolutely overflowing! Getting to be Verity's mommy is icing on the cake of my personal journey in motherhood. I'm so thankful God prepared us to be her special family.


I remember the terrifying days following her confirmed diagnosis halfway through my pregnancy. We thought we would have to bury our baby shortly after her arrival. How little we knew how strong our baby would prove to be!

I remember the secret fears of not knowing how to take care of this different child, even wondering if I could possibly love her as much as my other children. How unexpected the journey of becoming an expert in Verity's care simply because we love her unconditionally!

I remember the dread and anxiety looking at the countless unknowns. The "what ifs" threatened to overtake me and carry me into a sea of depression and despair. How little I fathomed what joy this small but mighty bundle would bring to us all!

Verity Irene is plunging headlong toward her 2nd birthday (Feb. 28). She is not a scary statistic. She is a beautiful, joyful, playful little girl. She completes our family. She touches the hearts of strangers. She has made us all better people simply for being part of our lives. When I was pregnant with her, I read similar testimonies from other special needs families, some of whom have grown very dear to us over the past couple of years as we have gotten involved in online communities. I clung to those words, other people's stories of love and joy and hope. And slowly I began to dare to believe that maybe...just maybe...someday that would be OUR story, too.

And now--it is. It has been all along, really. Perhaps at times we were so busy trying to survive we didn't realize what was happening...the struggles and fears and difficulties only highlighted the beautiful tapestry woven with threads of love and joy and hope.

If you or someone you know has received a scary diagnosis for an unborn or recently born child...please know first of all that you are not alone--you're not alone with this specific diagnosis, and you're not alone in feeling all the strange, unfamiliar, even contradictory emotions that seem to be overtaking your soul. Have courage--dig beyond the statistics and find the families who will become your tribe, those who are already walking the path you've been unceremoniously dumped on.

Most of all, reach out to the One who created you AND your child. Know that He never makes mistakes. There is purpose far beyond what we can see and touch.

And it is GOOD.


Wednesday, December 19, 2018

Footloose and Fancy Free!

It's hard to believe Verity's tenotomy surgery was a month ago today! After a scary reaction to some medication, she actually did quite well recovering, and life was a lot more calm than we had anticipated it would be. Of course...we realized WHY it was so calm the morning after Thanksgiving: Verity was plotting her escape! Would you believe she managed to get her right leg entirely out of her cast! (There are more photos and details on her Facebook page, Verity's Voice...maybe try this photo link.)

After a trip to the ED for temporary splints on 23 November, she got recast on Monday when the clinic opened...this time by casting techs who knew what they were doing and made sure there was a bend at her knees! So THOSE casts worked very well for the remainder of the 22 days she had to wear them! (I know she looks so sad in this photo...she was doing amazing work with her therapist, but clearly she wasn't too happy about it, lol. Fear not, the therapist gives her a break when she needs it!)



Cast-wearing quickly became a means of working out her abs, as Verity clunked and banged her legs up and down--with the brace between her ankles (put there to keep her hips open since the tendons in her groin area were also lengthened), it was definitely a good core workout simply to move and groove the way she wanted to!

So yesterday was the long-awaited cast-removal day! In the second picture below, you can see Verity covering her face--this is her way of shutting out people or experiences she decides she doesn't want to put up with, ha! But at last she was freeeeeeee!




We've been lotioning her legs like crazy, which seems to soothe her. I don't have a great photo (yet) of her temporary plight, which involves removable splint casts to keep her feet flexed until she gets fitted with AFOs (ankle-foot orthotics) a couple days after Christmas. I'm glad I didn't take time to get her fitted for new boots...we anticipated going back to the boots and bar, but after the surgeon examined her, he said that her right foot simply will not flex all the way. He did what he could, but Verity will need a little wedge in her specially fitted AFOs to allow her to bear weight evenly.

Let that sink in...! Bear weight!! Not only will our girl sit on her own (she's awfully close now), but someday, she will stand. Walk. Maybe even run!!

Our girl has some spunk for sure! Just yesterday when she was supposed to be napping, she was practicing sit-ups instead!

We've had other appointments (finally) related to the sleep study we did at the end of September, but I will save those updates for another time. I'm so grateful to be on the other side of this cast experience, and I am loving what I see Verity doing now that her legs and hips are free! Lots of movement (no surprise that she keeps kicking off her splints), lots of rolling back and forth (even onto her belly), and a ton of progress toward sitting on her own. My dream was to have her sitting unaided by Christmas...6 more days...!!

Tuesday, November 20, 2018

Fifteen Minutes

My baby stopped breathing on her own for 15 minutes today.

Did your stomach drop when you read that? It's been 13 hours since I learned that this is how Verity reacted when she was given fentanyl during a simple, outpatient tenotomy surgery. And my stomach is still churning.

Let's back up a bit and start with the easy part: the tenotomy portion went well. Verity is sporting purple casts attached to a wooden bar. The casts are to keep her Achilles tendons flexed, and the bar is to keep the hip abductors positioned just so. Both sets of tendons underwent this lengthening procedure. Verity will wear the casts/bar for 4 weeks. (Note to self: Call to schedule the cast-removal appointment. My brain could not handle making that phone call today.)


I knew Verity would be completely under anesthesia for this surgery. She has been under twice before (once for her g-tube placement and once for a sedated hearing test), and both times she had zero issues.

What I did NOT know was that fentanyl was part of today's protocol. I had asked upon arrival what the pain management plan was, and a couple different nurses assured me the doctor would go over that with me. It was about 45 minutes between when I asked and when it was surgery time. They allowed me to carry Verity to the operating room and be with her while she went under, and then someone whisked me away. Honestly, I totally forgot to pursue the medication question...(trust me, I've carried the weight of guilt because of my memory lapse)...I had realized that Verity's feeding pump and supplies had fallen out of her diaper bag, and I was anxious to grab them and return before they called me back.

It probably took me about 15 minutes to retrieve those supplies from my vehicle...15 minutes during which I had NO IDEA an anesthesiologist was doing the work of breathing for my daughter.

I had hardly sat down in the surgical waiting area when it was all over: an attendant walked me to the post-op room, where I found a very sound asleep Verity and got the run-down from the post-op nurse.

I did not hear about the fentanyl.

We waited and watched Verity. Her sats and heart rate were good, respirations were low (10-11), but that was to be expected, they said.

Verity slept. And slept. And slept.

The anesthesiologist came by to check on her. He said nothing about the incident. Nothing at all about the fact that my baby had stopped breathing while under his care.

Verity continued to sleep.

The surgeon came by to check on her. He said nothing about the incident. He did say he only recommended ibuprofen for the pain.

Verity continued to sleep. And as the two-hour mark approached and she was still sleeping, we tried some creative measures to wake her up. We got close...and then she would go right back to sleep. I wondered if I should be getting worried, but her color was good and by this time she no longer even needed the blow-by oxygen.

The post-op nurse has 40 years of nursing experience, and she was pretty calm. But I think by this point she was getting a little concerned herself. The nurse talked out loud as if reassuring us both that it wasn't too surprising that it was taking longer for Verity to wake up...after all, she's definitely a "lightweight." After all, it was only a little bit of fentanyl that made her stop breathing for 15 minutes.

WHAT?!

I have learned I am not very quick on my feet when things like this happen. It really took me all afternoon to process all of this: I wasn't told my daughter--my almost-21-month-old, 17-pound daughter with special needs--would be given fentanyl, a drug that has killed children in the Trisomy community. Furthermore, the doctors who had my daughter in their care...literally held her life in their hands...did not tell me that she stopped breathing for 15 minutes. The only reason I learned this happened was because the post-op nurse made a passing comment. I had spent nearly 2 hours with her and even SHE did not mention this staggeringly important detail!

Am I crazy to think this is a rather vital detail to be left out of the post-op narrative?!

I have contacted our PCM and received a reply from his nurse right away--she wants me to call the patient advocate at the hospital to get it documented and request a call back from the provider. I do wish I had been able to say something while I was there in person...I think I was so stunned, and then I also needed reassurance that it was in fact all right for me to take Verity home after all this had happened. She did wake up more or less "for good" about 3 hours after surgery, and we have monitored her all day and she has done better than expected, actually. I anticipated a rough few days and nights...she napped well this afternoon, and though the evening was a bit difficult, she is resting well now with her pulse oximeter on and nasal cannula in place.

But let the records show...fentanyl will NOT be given to Verity AGAIN!!!

Thank you, Heavenly Father, for protecting our precious girl today. May she (and we) ever glorify you no matter what...

Sunday, October 21, 2018

Current Status (Quo)

I can't believe it's been 2 months since I wrote a blog post! Do you know what that means?! We've been experiencing some kind of NORMAL! That is to say...we've been living the busy life with our kids, and Verity has been growing and developing and thriving in the midst of it all.

So with a bit of time and a quiet house, I decided an update was way past due, especially since we do have some things to report that we haven't detailed on Verity's Voice (our Facebook page).

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First of all, I am pleased to report that Verity's feeding regimen continues to improve as we work toward a more "normal" feeding routine. We are up to 3 bolus feedings now, with only 14 hours of slow continuous feeding, running 4pm to 7am. This means Verity has quite a bit more TUBE-FREE time during which she can practice her moving and grooving! It is SO nice to be able to hold her, carry her, and help her with her physical skills when she doesn't have her "leash" on! While she still isn't eating by mouth, we are doing more and more tasting and doing so while she is having her bolus feeds so that she can begin associating food with a full (or filling) tummy.

So her feeding schedule looks like this:

  • 0700: Turn off the feeding pump (ending the continuous feeding)
  • 0800: Begin bolus #1: 75ml over a 30-minute period (rate of 150ml/hr)
  • 1100: Begin bolus #2: 75ml over a 30-minute period (rate of 150ml/hr)
  • 1400: Begin bolus #3: 75ml currently at a rate of 85ml/hr, with rate increases of 5ml/hr every 3 days.
  • 1600: Begin continuous feeding: 34ml/hr for the next 14 hours.
Typically during the first 2 bolus feeds, Verity will sit upright at the table in her chair. She has had tastes of applesauce and sweet potatoes by spoon (or on her pacifier), and we also frequently give her a food "stick" to hold and explore with her mouth. She has tried carrot and celery sticks, cucumbers, and apple slices so far. One of her day nurses wants to try a big pretzel rod! Verity's interest level varies from day to day, but I'm in no hurry. She's GROWING!

And speaking of which, I don't have exact measurements--we should get some this week since we have a couple of appointments--but last time we weighed her she was about 16lbs, 12oz, although that was with clothes on. STILL...she had dropped under 16 pounds awhile back when she was fighting off a sickness, so this is encouraging!!


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Last week we had a 6-month check-up with the orthopedic doctor. The good news: Verity's hip X-ray shows all is continuing to look good. The doctor says she should have yearly X-rays as long as she is growing.

The bad news: Verity's Achilles tendons have tightened considerably, and the tendons in her groin are likewise still very, very tight despite the stretching exercises we do faithfully and frequently. So, a November 19 surgery date is scheduled for a tenotomy to release those tendons. After the brief procedure (which will require sedation), Verity will get full-leg casts with a brace between her legs. She will need to wear those for 3-4 weeks, and then we will resume the boots and bar (which we have discontinued at this time).

So...if you think of us during Thanksgiving week, please pray that Verity's surgery goes uneventfully and that she has minimal pain and recovers quickly. We are already dreading the lack of sleep that will undoubtedly accompany this process!

Below you can see her left foot, which is "rocker bottomed," a common feature in Trisomy 18 kiddos. Until our appointment last week, I had not heard a doctor describe her foot in this way. I assumed it looked different from the other foot simply because they were both severely clubbed and had to go through the casting process (a year and a half ago!). You can also see the back of the heel, which will not flex any more than this even if we are trying to help her do so. The right heel is much more affected than the left...we have not been able to get that foot flat onto her boots for some time now, so I was not terribly surprised when I heard the doctor's recommendations.



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In other very quick news:

  • Verity's sleep patterns have improved DRASTICALLY! She usually will take a 2 or even 3-hour nap (although sometimes only 45 minutes or an hour) in the afternoon. If she gets a good nap, she typically does have a pretty decent night of sleep. She is even sleeping all the way through the night on occasion!
  • I have successfully completed CNA training and passed the Colorado state exam! This involved 4 weeks of night classes and clinical experience, followed by a full day of written and skills testing. I am officially a certified nurse aid! What does this mean? Well...
  • In the state of Colorado, family members are allowed to receive payment to care for their disabled loved one. There is an assessment tool that tells how many hours per day one can qualify for, and when a caregiver is certified (or licensed or registered, depending on what level of care), he or she can be hired through a home health agency. I work through the same agency that provides our skilled nursing care, and I'm quite pleased with the training and preparation I received through this whole process. I chart for 4 hours a day, and it amazes me that we are blessed to receive financial help for the tasks I was already doing with Verity. What a GIFT! The Lord knew we needed to be in this state for multiple reasons, and this is just one way He has tenderly shown His provision for us. Jehovah-Jireh, indeed. 
  • I will detail later the results of the sleep study we had at the end of September, as I still need to meet with the ENT and later on the sleep clinic doctor.
  • Tomorrow we have a liver scan and kidney ultrasound--we do this every 3 months, although this will be Verity's first liver scan. Our T18 kiddos have a higher chance of cancer/tumors, so it's proactive vigilance. 

Monday, August 20, 2018

Where's the Hope?

On Thursday I checked our mail for the first time in a few days and found a sweet package for Verity. I love the message from my friends at Hope for Trisomy*. These tangible gifts of love and support brightened my day. (Thank you, Erin!!!)


On Friday I learned that Karson, a sweet, beautiful, recently-turned-five-year-old girl with Trisomy 18, went to be with Jesus. I had gone to bed praying for her after seeing her mama's frantic post about a last-ditch effort to save Karson with ECMO. It didn't work.

Where's the hope in that?

This jolt to the Trisomy community reminded me of another recent bitter loss. On the 4th of July I saw photos of smiling Maddy radiating sunshine in her red-white-and-blue, and the next day she was gone. Just...gone.

Where's the hope in that?

My sweet friend Kirsten was forced to say goodbye to Heath, a special needs boy who left her womb early to join brother Gavin (who had Trisomy 18) in heaven.

Losing two special boys back to back. Where's the hope in that?

Fernando went to heaven on Good Friday, just before getting to celebrate his 4th birthday. He left behind loving parents and a proud big brother who wanted to tell his new class last week all about how special his brother in heaven is.

A grieving family left with only memories. Where's the hope in that?

As I sit reflecting on what is happening in our little Trisomy world, I ponder and pray for families who are facing chemo...getting tests done and waiting for answers...preparing for open heart surgery...caring for their little ones through sicknesses at home and in the hospital. (We ourselves are on the tail end of a fight with aspiration pneumonia that landed Verity in the hospital for a brief stay.)

In the midst of it all...in the midst of tests and sicknesses and therapies and surgeries...we hope.

Hope for Trisomy? Yes. Yes, there is.

Our own Trisomy journey has taught us that hope looks different at various points along the way. During pregnancy, I hoped I would meet Verity alive. Now, 18 months later, we have hope that someday Verity will sit up by herself, move herself around (whatever that looks like), and communicate with us (whatever that looks or sounds like).

We have hope that we will have many more experiences with our girl this side of heaven.

And yes...even though we don't really like to think about it...our hearts still hold onto the truth that ultimately, we DO have the hope of heaven awaiting us, an eternity in which Verity and her Trisomy brothers and sisters will laugh, sing, dance, and play without hindrance.

I can't pretend to know how it feels to lose my child. I only know how hard it hits me, every time it happens, even though in most cases I've never met the family in person. But the death of a Trisomy child affects everyone in the community. It's all too easy to put ourselves in the place of the grieving parent, because it's something we've all imagined happening, whether we admit it to others or not. But does the threat of death remove all hope in life?

What about this? Does the reality of a difficult life remove hope FOR life?

It's worth pondering. I remember the point during my pregnancy when I realized it was time to stop preparing for Verity to die and start preparing for her to LIVE. And I had to face the fact that her LIVING would look much different than any of our other children's lives.

Where's the hope in that?

Where's the hope?

I'll tell you. I see hope every day. I see it in the smile of a little girl who didn't smile for months. I see it in the giggles and grins she now gives her brothers and sisters. I see it all over her face when her daddy comes home and sings her special song. I see it in the twinkle in her eyes when she pushes against me wanting to be rocked. I see it in the kicking of her legs, the workings of her fingers, hands that used to be clenched so tightly. I see hope in motion as Verity rolls herself and works hard during therapy, doing things we never dreamed she could do a year ago.

I see hope in the form of a wheelchair that will grow with her. I see hope in the form of a committed family chipping in to make sure Verity has what she needs when she needs it. I see hope in the love and care her nurses have for her as they cheer her on each day and night they spend with her. I see hope in a medical community at large that is finally starting to understand the potential our kids have to grow and thrive with proper interventions.

I see hope everywhere Verity's life shines.

And it's a beautiful thing.


"...and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." --Romans 5:2b-5


*Hope for Trisomy's Addy Grace gift is inspired by the life of Addalyn Grace, who lived for 26 months with Trisomy 18. Sweet Addy was one of the "older" children I connected with through my newfound online community. Her mom, Erin, did a special post every day in March (Trisomy Awareness Month), which I looked forward to every day since at the time I was in the NICU with our newborn Verity. Erin's love for her only daughter was so evident...even more, her love for Jesus shone in every post. My heart broke when Addy unexpectedly went to heaven. Through the heartbreak, Erin and Jay continue to express the hope found only in Jesus Christ. They continue to be active in the Trisomy community and have touched far more lives than they will ever know.


Sunday, July 29, 2018

S.O.F.T. Conference

For photos of our adventure, see our Facebook album here!

On July 18 we drove to Omaha, Nebraska, for our first trip since moving to Colorado just over a year ago. We had been looking forward to the annual conference put on by S.O.F.T. (Support Organization for Trisomy 18, 13, and Related Disorders). Well, to clarify, Ted and I were looking forward to the conference, while the rest of the family excitedly made plans to meet up with their friends in the local area since we lived there from 2015 - 2017!

Anyway...the drive was fairly uneventful, though Verity did have a small bout of emesis during the drive. We decided to forego the bolus feeding during our driving days, and we simply maintained her feeding regimen while we were in Omaha. Overall she did pretty well, though it was obvious she knew she was not in her normal environment, and that did cause her some distress. (But it also gave us opportunity for some great cuddling sessions, since at least Mommy and Daddy were familiar and brought her comfort!) So there wasn't a whole lot of quality sleep, but we figured that would be the case going into this experience!

Here's a rundown of our trip:

WEDNESDAY
Driving day! Left our home at 7:45am (mountain time). Arrived at the conference hotel at 5:45pm, just in time to check in and get our conference bags. Then we checked in at our overnight hotel and went to Sinful Burger, a favorite restaurant of our family's. We met several friends there and enjoyed visiting. We said goodbye to the older 4 kids, who went to various houses to spend the night with friends, and had a rather restless night in the hotel room with the other 5 children.

THURSDAY
We dropped 4 kids off in the child care room and went to our first session, which touched on various legalities surrounding guardianships and trusts for special needs individuals. We didn't take notes but it was good information, and we did learn that there are so many differences from state to state that really the speaker was somewhat constrained in what she could tell us, as she works in Nebraska, but she was very knowledgeable and gave a fairly understandable overview of what kinds of things might be possible from state to state.

Our 3 little boys left after this session, as a friend of mine came to pick them up and take them to the zoo with her kids, followed by an overnight and more activities, so we were down to only 2 children for awhile, lol.

The next session covered ways to prevent seizures, light sensitivity, and headaches for our children. We were sitting in the back, and when the A/C kicked on, it was a bit hard to hear, but the information was excellent. I confess I was a bit distracted by all the wonderful people in that room! The previous session wasn't nearly so full, and I really loved looking around and seeing faces that I had previously only seen on Facebook! Ted and I especially enjoyed watching Faith puttering around in her walker--I've seen her videos on Facebook and have always been amazed at her! (Later in the week I got to meet her parents, and we talked at length about how they helped Faith learn to walk.)

Our third session was Integrative Medicine: Thinking Outside the Box, which was excellent. The doctor is herself a mom of a 10-year-old girl with Trisomy 13, and she spoke about so many natural options from essential oils to acupuncture to massage and more. Such good, practical information.

Then it was time for lunch. We visited with several families, and we decided to send Ted to get some coffee for us from The Omaha Bakery, a favorite of ours since Michelle baked Verity's dedication cake. We talked our way through the next session, as we had connected with a couple more families and decided to just hang out since we would have been late anyway.

Then it was time for the Moms-only and Dads-only sessions. It was a time to get to know each other, share encouragement, concerns, whatever. It was such a joy to see so many kiddos with their moms in our session! We had a huge photo op with I don't know how many kids on blankets on the floor. So precious! Verity was definitely the baby of the bunch. (By the way, 38-year-old Megan with full Trisomy 18 was the oldest T18 person we met at the conference!)

We reunited with Rhema after this final session--she did so well considering it was a strange place and a very long day! We went back to the hotel and changed to our dinner clothes (choosing pink items in honor of Stacy, a T18 young lady who loved the color pink and who passed away in the spring). Then back to the banquet room to enjoy the Welcome Dinner. I wheeled Verity in her stroller for the "Parade of Stars," which featured all the Trisomy attendees. We watched a precious dance performance from members of a local adaptive dance studio called Dancing Beyond Limits. The keynote speaker was Lizzie, a 32 or 33-year-old with mosaic Trisomy 18. She read a speech that was several minutes long--it was wonderful to see someone with a related chromosomal issue who can walk and talk and interact so well! (You can hear a portion of her speech here.) Lizzie knows and loves everyone--we were new, so she had to come meet Verity. :-) (Because I know I will be asked...a mosaic Trisomy only affects a certain percentage of cells. Whereas Verity has FULL Trisomy 18, meaning every single cell in her body carries the extra 18th chromosome, a person with mosaic T18 may have only 20% of cells affected, or 85%, or any percentage--make sense?)

We were pretty wiped out by the time the dinner portion was finished, plus we had two little girls with us who had not napped much to speak of, so we went ahead and skipped out on the dancing portion! That night in the hotel room was much better than the previous night, thank you Jesus!!

FRIDAY
Our first event this day was the Stroll for Hope, a S.O.F.T. fundraiser that has been going on yearly for awhile in memory of Jonathan. It was fun to see families dressed up and strollers decorated. With this being our first year, we didn't know what to expect, but wow, some people went all out! It was a leisurely walk around the hotel commons area, which was great because Omaha in the summer does not make anyone want to get out and exercise, lol.

We went from there to The Omaha Bakery again, because Michelle told Ted he had to bring Verity and me back! We also met up with one of our favorite NICU nurses, Donna, who was our discharge nurse when Verity got to go home from the hospital. It was so lovely to see these sweet women and let them hold Verity and admire how much she's grown!

Then it was time for clinics at the Children's Hospital. This was similar to the children's developmental clinic that Verity went to in May 2017. Each Trisomy family had an exam room, and the specialists rotated in and out, giving us about 20 minutes each. First up for us was the audiology team, who remembered Verity and were so delighted to see her again and hear about her progress! Then genetics, and again we saw a familiar face from our time in the NICU. I don't remember any specific thing we gleaned from these sessions...it was mostly us telling the teams an overview of Verity's history.

The physical therapist that came in gave us some great tips on helping Verity build upper body and arm strength. You can see the video here. His was a very practical session that I think especially resonated with Ted--both are dads and this PT had a different approach than the female PTs we've worked with!

It was really good to visit with the neurologist, a specialist we have actually NOT seen before. She went over the various types of seizures and the many different ways they present so that we have a much better idea what we should look for. Verity hasn't given any signs that she has ever had a seizure before, but we know they are fairly common with our Trisomy kids, so it's something to be on alert for.

Finally, we spoke with a GI doctor (not the one we saw when we lived there), and he was helpful in giving us a few different options for Verity's poo issues...though we are hoping they continue to improve as we add/increase the bolus feedings to her feeding regimen.

That was our conference day...our family day ended after we picked up our little boys, grabbed some pizza from our favorite pizza place in Glenwood, and went back to the hotel for some dinner and pool time before bed.

SATURDAY
We moved out of the hotel Saturday morning and then attended the conference picnic, where we met up with our older 4 kids (whom I had asked to come to the picnic so that they could have the opportunity to meet some of the other families who came). The picnic was wonderful! Face painting, balloons, games, espressos, smoothies, catered food, but best of all was the opportunity to leisurely visit with people. I probably could have stayed much longer, but our kids were getting antsy to get back to their friends, plus we were approaching nap time with little people, so we headed out to Glenwood, where we stayed for a few more days catching up with dear friends.

Our drive home would have been uneventful if it weren't for our 3-year-old, who is extremely prone to motion sickness, vomiting every couple of hours. Sigh. But all in all, we are so grateful we had the opportunity to attend the conference, meet so many wonderful people, and learn more about how to care for our sweet Verity! The next few conferences are a much farther distance away from us, so I am not sure that we will be able to attend them. What a blessing that this year the location was relatively close and allowed us to meet up with friends and family in the area!