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...!!

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. 

Update: Spring Appointments

Recent posts have detailed the couple of respiratory illnesses that Verity had in March and April, so now it's time for a general update on the slew of other appointments we've had over the past few months! October was our busy month in the fall as the referrals finally went through and we started seeing her specialty providers, and April of course was the 6-month mark for follow-up. So here is the list of what all we've been up to!

March 22: Pulmonology
The pulmonology follow-up was scheduled even before Verity's first illness struck, but it was timed well as she had been out of the hospital about 10 days or so. At that time her lungs sounded amazingly good, and since we had never had any lung issues before, the doctor said she would leave it up to the Sleep Clinic doctor as to whether or not she would continue to follow Verity. Of course, little did we know that Verity would have pneumonia about a month later! Sleep clinic is scheduled for May 25...

April 2: Ophthalmology
We drove 45 minutes to get to Ft. Carson to spend a whopping 5 minutes with Dr. B, who assured us Verity's eyes are looking great and he doesn't need to dilate them again until our fall appointment. Okie dokie then.

April 17: Orthopedics
At this follow-up appointment we got another hip X-ray, which indicated her left hip is still stiff but not any worse than in the fall. Her feet are looking good and we are to continue using the bar (supposedly naps and nighttime but in reality more like 2-3 hour chunks a couple of times a day).

April 19: Pediatric Visit
We needed a doctor to look at Verity's umbilical hernia, which was repaired with her G-tube surgery May 2017 but has been flaring up again recently. She ordered an abdominal ultrasound. (This is the day we realized Verity was getting sick, and at 3am the next morning we took her to the hospital, where she was diagnosed with aspiration pneumonia.)

April 24: Renal ultrasound and barium enema
The ultrasound looked normal (per the follow-up the next day), and the barium enema did not reveal any particular reason for Verity's difficulty pooping, although it did show a "tortuous" pathway. (Once she gets started going she does pretty well, but we frequently have to give her a liquid suppository to start the process.)

April 25: BAHA fitting
Verity got her Bone-Assisted Hearing Aid, which fits on a headband! We learned lots of details about how to use this device and have a whole bag of STUFF to go along with it. She wears it in stints, as it is very overwhelming for her to have it on all the time at this point. Slowly we are working up to it! She isn't terribly responsive, although we know for sure when she is DONE!

April 30: Adaptive Stroller Shopping
We went to an equipment provider that we know of through The Resource Exchange (our home therapy program) to look at and take measurements for an adaptive stroller for Verity.

May 3: Echocardiogram
Our cardiologist is very optimistic about the way Verity's heart looks right now. Her large VSD has completely patched up! She still has a teeny tiny one that causes her heart murmur, but everything is balanced, and he does not think PH will be a problem. Whew! He feels comfortable waiting another year before we do another echo.

May 4: Post-hospital follow-up with PCM
Verity had been off oxygen for some time before we had this appointment, and she looked quite well. Her PCM was pleased.

May 7: Abdominal ultrasound
This was a pretty quick appointment, but we didn't hear anything about the results until I asked a week later. We have a referral to see a pediatric surgeon since clearly the hernia is there.

May 15: Dietitian assessment
Our Verity weighed in at 14 pounds, 14 ounces!! And she is 26 inches long now!! In less than 2 weeks, she will be 15 months old...15 pounds by 15 months!!! Clearly she is growing and thriving on the Nourish formula. Now that she is 100% on this whole-foods mixture (plus plenty of water), our next step is to meet with the GI doc and formulate a plan for compressing her feeds so that she can get on more of a bolus feeding schedule. Her vomiting can still be a problem, particularly when she is bearing down to poo or pass gas, but it is much less frequently to be sure. I'm not going to lie...I would LOVE for her to not be hooked to the feeding pump 24/7. But...counting my blessings. Our baby is growing and thriving and becoming SO much stronger and sturdier!

In between all the above listed appointments were nearly weekly visits to the chiropractor as well as nearly weekly occupational and physical therapy sessions in our home.

COMING UP:
May 25: GI follow-up and Sleep Clinic

May 31: Surgery consult

June 6: Speech evaluation

June 7: BAHA check

Whew. That's all for now, folks!!!

All Kinds of Check-ups

Here are the nitty-gritty after-visit summaries of Verity's recent appointments and a quick word about an upcoming visit.

GI, September 29, 2017
Stats:
BMI: 15.33 (14th percentile)
Weight: 11lbs, 13.5oz (< 1st percentile)
Height: 23.31" (< 1st percentile)

1. Swallow study ordered. [Scheduled for November 30--in the meantime, we need to work with Verity to help her swallow more than she currently is!! The study requires at least an ounce, and she only takes about 5ml on a good day.]
2. Zarbees multi-vitamin recommended [now using daily]
3. Trial of a powdered probiotic recommended [now using daily]
4. Follow-up in 2-3 months to check on weight, feeds, etc.
5. Call or message with weights every 2-3 weeks.
6. Work toward 105-110ml per feeding.

Since this appointment, Verity's reflux problems have resurfaced. Every time we try to bump up her feeding amounts, it seems we see an increase in vomiting and discomfort. We had gotten her up to 95ml, but we went back to 90 the last couple of days and she is still acting uncomfortable during her feedings and shortly after. We've slowed the rate down as well. I spoke with a nurse from the GI office and we are planning to do a pH scope to determine the level of reflux and use the information to help us decide the next course of action. Seemingly, there are two options: medication and a Nissen fundoplication. We do not yet have a date for this test.

ENT, October 16, 2017
Stats:
BMI: 15.80 (23rd percentile)
Weight: 12lbs, 3.9oz (< 1st percentile)
Height: 23.35" (< 1st percentile)

[This doctor was very thorough with his notes! I'm going to copy most of them here and simply link to definitions of the more unfamiliar terms and place explanations in brackets.]

"Verity is a 7-month-old female with a hx of Trisomy 18, hypotonia, aspiration with G-tube placement and bilateral hearing loss. Most feeds are happening through the G-tube. Family had a sleep ABR [Auditory Brainstem Response] back in May of this year that showed severe CHL [Conductive Hearing Loss] in the right ear. MOC feels that the hearing has improved over the last couple of months, no wearing hearing aids at this time. Family has not been evaluated by an ENT prior to today. There are concerns about sleep apnea based on her sleep patterns, retrognathia, hypotonia and her diagnosis of Trisomy 18.

Examination today showed poor tone, not able to hold her head up. Bilateral external auditory canal stenosis, unable to view the ear drums [her ear canals are abnormally narrow]. Some soft tissue narrowing of the nose at the vestibule, improved nasal airway on the mucosal side. Flexible laryngoscopy was performed and showed some mild nasal narrowing in the midportion of the nose, no adenoid obstruction, intermittent collapse of the pharynx when she was bearing down. The vocal cords were mobile with a good view of the larynx, no prolapse of the tongue.

I would like to repeat the ABR during sedation and obtain bone conduction for both sides. I would recommend hearing aids of some form sooner than later. We will order a sleep study to rule out sleep apnea. I would like to see the family back after the sleep study and the hearing test."

Currently the sleep study is scheduled for January 8, but we are on the waiting list in case something opens up sooner. If so, it would be a same-day deal, so we'd need to drop everything and make haste to the sleep lab!! I hope we can get some answers sooner rather than later...these awful nights are killing us!

Orthopedic, October 17, 2017

I don't have a lot of written notes on my paperwork, so I'll try to remember the main points...

1. Verity has responded very well to the boots and bar--we are cleared to use it for nights only and not concern ourselves with nap time since her sleeping habits leave much to be desired.

2. They did change the angle her boots were fixed to the bar so that her feet are not turned outward nearly as much. We hope this is making it more comfortable for nighttime sleeping! 

3. New boots will be fitted on Monday, as her toes are nearly hanging out of her old pair!

4. They took an X-ray of her hips, as there was concern about less movement in her left hip. Things look all right for now, but there is danger of her hip coming out of socket. We are to do certain stretches with her diaper changes to help with this issue.

5. They want a follow-up with the PT in 3 months and with the doctor in 6 months.

Coming up: 

Cardiology (Echocardiogram), October 26, 2017

This appointment is to give us a baseline echo of Verity's heart; when we last examined it in April, everything looked wonderful. The VSDs were all closing, everything was balanced, no heart murmur. However...at the ENT visit on Monday, the doctor heard a murmur, the first time this has happened. He said that if HE could hear it, then it definitely needs checked, since that isn't his specialty. :-/ So...I wasn't concerned about the echo appointment before, but now...I am...a bit...