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.

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!!!

GI and Urology Test Updates

My poor baby is crying...so this will be as quick as I can make it.

The upper GI and SBFT showed that Verity's anatomy looks just fine, but stuff moves slowly through her system. Not surprising. Poor baby--that was a rough day, with them having to give her barium multiple times because she kept vomiting it out.

The good news is that she is doing very well with the 24-hour continuous feed. We are currently at 26ml/hour during the day and a bit lower at night (because she did struggle with reflux recently and we are being cautious). We are to increase by 1ml/hr every 2-3 days until we get to 30ml/hr, and then after she is stable with that amount, we will work on cutting the time down while maintaining the volume so that she can have some tube-free play time.

At the urology appointment today (which was scheduled because of her two UTIs in the fall), Verity weighed in at 12 pounds, 12.8 ounces! She was down to 12 pounds, 5.9 ounces when we last saw the GI on December 19.

Today was a hard day. Ted took the day off because the tests were up north, and we decided to have him take Verity with our nurse. I'm thankful he was able to do that--it sounds like it was an absolutely awful time. :-( The renal ultrasound went well. The VCUG got off to a rough start since they had to cath her FOUR TIMES, finally calling the urologist himself to do it. Grrrrrr.

The scan showed that she does have some renal reflux; the urologist called it a 3 out of 5 and at this point only wants to follow up with another ultrasound in 3 months unless she gets another UTI in the meantime.

As I said, it was a rough day, and there was much screaming, crying, vomiting (from the screaming and crying), and more screaming and crying. She is finally pretty quiet--she must be exhausted, poor dear. I know it will be painful when she urinates the next few times, so prayers for quick healing would be appreciated.

More thoughts later when I'm not so tired...