Last weekend we were so blessed to celebrate Pierce's third birthday
with lots of friends and family. Even though our outdoor plans were
washed out, everyone was a good sport about it and it didn't stop us
from having a blast. Pierce LOVED seeing everyone (have I mentioned the kid is a major extrovert?) and has been asking for another "puppy party" ever since. Thanks to everyone who came out!
The Invite
Main course: "Hot Diggity Dogs"
"Paw-sta Salad"
"Water Bowls" (Blue Jello)
The spread
"Chew Sticks" (Green Apple Twizzlers)
"Kibbles and Bits" (Cocoa Puffs and Pretzels)
"Toilet Water"
The cake, as requested by the birthday boy
Singing Happy Birthday to our big 3 year old
Blowing out the candles
"Pet Adoption Center" (aka birthday party favors)
The kids had to fill out their certificates of adoption
Ruthie picking out her puppy
"Dog Bone Prints"
Maddie stopped by to get a bone
Puppy love
Beau came all the way from Greenville to celebrate
I can't believe it's been two months since we updated this blog! Time is just flying by. Pretty soon, we will have a three year old. Crazy.
Pierce has been making great strides these days and is talking up a storm. It is so fun to see his language emerging, and it's definitely not something we ever take for granted as we were told grim predictions early on.
Forgot to post this one on the blog on Valentine's Day.
We've had 2 big snows this winter and Pierce LOVED both.
A 2013 Christmas classic (Back by popular demand)
We have some pretty big news- we are going to be traveling to Michigan for an intensive therapy program for Pierce. Pierce and I will be out of town for nearly a month! It's a big trip for us, and an even bigger one in terms of what it means for Pierce.
Here's the scoop on the camp:
It is a Conductive Education Program. Here's a little script taken from their website that should give you a snapshot of what they do: Conductive Education integrates medical knowledge with educational
methods to enable the individual to learn how to gain control over his
or her movements. Children are taught to see themselves as active and
self-reliant participants in the world. In short, Conductive Education was designed as a therapuetic approach to help kids with motor delays/disabilities learn how to integrate and function in the "real world,"with as little adaptive equipment as possible.
Pierce will attend up to 6hrs a day for 5 days/week, so when I say intensive, I really do mean intensive. He will be grouped with 7-8 other kids and several teachers. At the end of the program, Pierce will leave with new skills, no doubt, but also with a whole packet of information to take back to his home therapists and teachers.
We are just so thrilled to see how much Pierce learns during this time. And we know our social butterfly who loves being around new people, will thoroughly enjoy being in a classroom setting for the very first time.
To make the deal even sweeter, we are so excited that our friend Colin and his mommy will be joining us in Michigan. It's going to be so fun to watch the 2 boys interact and learn together!!
How we got the funding to go:
I really just want to take a moment to thank a really awesome organization, Bee Mighty. We have been so blessed to be awarded a tuition scholarship from BeeMighty that makes it possible for us to pursue this opportunity with Pierce. When we received the word that BeeMighty would be covering Pierce's tuition, we were so humbled. So, if you feel inclined to send a little "thank you" gift on behalf of the Franks family, head over to BeeMighty's site and do so, please. 100% of their proceeds go towards funding therapy for NICU graduates in Charlotte.
And finally, here's how you can pray for us specifically:
1. For protection in traveling to Michigan.
2. For protection against illness. This will be Pierce's first time in a classroom type setting, and to be honest, he's been semi-quarantined his whole life, so this will be his immune systems first big test. Though it's hard to tell by looking at him, his preemie lungs are still pretty damaged from being ventilated for so long in the beginning and the slightest cold could still land him back on o2, which means he'd miss out on some of the program. Please pray that he can remain healthy throughout the program. Pray also for Colin as he's in the same situation as Pierce.
Today we traveled the 2.5hrs to Duke to meet with a new neurosurgeon. We have been searching for a local surgeon who would be willing to work with Dr. Warf in Boston.
We heard from the surgeon on Wednesday that our case file had been reviewed and that she would like to order the MRI (exactly as Dr. Warf recommended), but needed to see us in the office first. We weren't expecting to get much news as this appointment was more or less a formality to ensure that our insurance would cover the MRI the surgeon wanted to order.
It was a great appointment (well, except for the fact that our little guy has developed a tremendous phobia to white coats, paper covered exam tables and strangers, but can you blame him?). We LOVED, loved, loved the new surgeon. She was so kind and compassionate and spent so much time reviewing Pierce's case (including the time she and her nurse practioner spent reviewing his 142+ pg summarized chart).
She agreed with Dr. Warf that we need a detailed MRI before we determine what/if any surgical intervention is needed. You may remember that the only scans Pierce has ever have had been quick CT and rapid MRIs, meaning the picture quality isn't the best (think how hard it is to capture a non-sedated toddler on camera and you'll get the idea of why we haven't gotten a clear shot). And so, she has ordered the MRI to be done at Duke in the few weeks. We should have an appointment date soon. While I'm definitely nervous about Pierce being placed back on the ventilator for the MRI, I know this will be best for him and it's our next step to determine what's best for him.
The best part of the appointment was that this surgeon has no problem coordinating and working with Dr. Warf in Boston. She even stated that she'd fully support us going to Boston for the surgery and that she'd have no problem managing Pierce's care locally. Can I tell you how happy that made us?! To know that we finally have two surgeons, in agreement, like minded and willing to work together... nothing short of miraculous!
Thank you all for your prayers. Here's how you can pray for us in these upcoming weeks:
1. Pray that Pierce does not become symptomatic. Today the surgeon stressed to us how serious and emergent the symptoms could be if Pierce did start to be troubled by the fourth ventricle swelling. Let's just say they made the typical shunt failure symptoms (nausea, vomiting, headache) seem like a walk in the park. It's never easy to hear that your child could stop breathing or lose the ability to swallow and choke.... I'll be so glad when this isn't hanging over our head! So please, please pray that we never experience symptoms!
2. Pray that Pierce would tolerate the general anesthesia and the ventilator and that he would have no problem coming off. (I'm sure all my friends whose kids spent prolonged time on the ventilator will understand my nerves on that one!)
3. Finally, pray that the MRI would show that Pierce is a good candidate for the ETV procedure and that he would be able to have his shunt removed. This would be incredible as it would mean a life of shunt independence and one less lasting remnant of his extreme prematurity.
Thank you for continuing to pray for us and for continuing to follow us on this journey!
L
We're back from our appointment with Pierce's neurosurgeon. Unfortunately we were still given the choice of choosing between 2 options, and even now have a 3rd option. (This doesn't make things easier when trying to decide.)
Pierce's surgeon feels like we could try the aqueductoplasty and ETV procedure (endoscopic), but we'd first have to turn up his shunt and cause his ventricles to swell. He thinks it's a long shot, but could have the most benefit in the long run if it works, because it would make Pierce shunt independent. However, this procedure is far more complicated and riskier to Pierce. The main risk is that he'd have paralysis in his eye, though the doctor could not tell me how big of a risk that is because they don't usually treat kids this way. The other risks are the fact that we'd be inducing hydrocephalus again (by turning his shunt up) and there's no way to predict how Pierce would handle this (it could cause extreme headaches, vomiting and intracranial pressure).
Of course, option 2 is to place another shunt. The surgery itself would be easy and straightforward, but long term, it almost guarantees more surgeries for Pierce. Having a complicated shunt system is not ideal and carries with it long term risks of infections (meningitis), and shunt malfunction.
We told Pierce's surgeon we were seeking Dr. Warf's opinion and he was open to hearing his input.
At this point, we will wait to do anything until we've had our consultation with Dr. Warf from Boston Children's Hospital. We really feel like this is the next step for us as neither doctor here can offer us a solution we feel comfortable with.
Fortunately, Pierce's fourth ventricle has not swollen significantly in the past 7 months. It's very enlarged and has always been, but does not seem to be rapidly increasing in size. This means that time is likely on our side. No one can say for sure when or even if Pierce will ever become symptomatic and this makes developing a treatment plan more difficult.
That brings me to the third option: do nothing. Because Pierce isn't symptomatic, we could wait and see if he ever becomes symptomatic before treating him. While Pierce does have balance problems, it's hard to say whether or not they're a result of his earlier brain bleed or from this new problem. The surgeon today said he does feel like this needs to be treated at some point, but it is not urgent. We are just thankful we have more time to search for the best option for Pierce.
We trust that God has led us to Dr. Warf for his opinion and are hoping that he will be able to bring more clarity and wisdom to this situation. Our consultation (via telemedicine) will be on Wednesday, January 16th. Please continue praying that both the surgeons involved and us would have wisdom and guidance on the best solution for Pierce.
Also, while you're praying for Pierce, would you please pray for our friend Bella? Bella is a former 24 weeker who had a bleed almost identical to Pierce's. She was treated with the ETV instead of a shunt and is going tomorrow for a MRI as they think her ETV has failed. She has surgery scheduled for this Thursday and until they see the MRI, they won't know for sure what surgery she will be having-- shunt placement or ETV. Please pray for her and for her family as this is a scary time for them. Her mom, Becky has been such a dear friend and we've spent many hours on Skype swapping stories/experiences/tears.
Not a whole lot to update tonight as we are on the eve on our appointment, but I wanted to update you on a couple of things.
#1. Tomorrow at 215 pm we will meet with Pierce's neurosurgeon to discuss what course of treatment he recommends considering his initial recommendation was completely different than the second surgeon's opinion. Please pray for clarity and wisdom for us and for the surgeons involved.
#2. Because of the differing of opinions and the complexity of Pierce's case, we have decided to seek an opinion outside of Charlotte. We are hoping to have a teleconference (via the internet) with Dr.Warf from Boston Children's Hospital on January 16th. Dr. Warf pioneered the technique that the second surgeon wanted to attempt on Pierce. Because of his vast experience (he's known as the world's leading specialist in treating pediatric hydrocephalus), we've decided we can't go wrong with a consult from him. Please also pray that he would have wisdom as he reviews Pierce's case.
We so appreciate your prayers during this difficult decision making time. We see how the Lord is working and leading us and hope to share one day the many things that are transpiring throughout this time. Just know that we so appreciate the support and love you are all showing and we are so humbled by how many care for us and our boy.
First of all, thank you so much for the sweet messages, fb posts, and phone calls we've received. It is so encouraging to know that there are so many of you walking this journey with us!
Secondly, we wanted to give everyone a quick update.
Unfortunately we don't know much more than we did on Friday.
Here's what we do know:
1) Pierce's fourth ventricle is trapped and has grown in size since the last scan. Fourth ventricle entrapment is rare, but does occur in 3-4% of shunt
cases. The fourth ventricle sits deep in the middle of the brain, just
over the brain stem.
2) Pierce's doctor has reviewed the scan and would like to place a second shunt catheter into this ventricle to drain the fluid.
3) Unless Pierce's condition worsens (he's asymptomatic now), we will go in on January 8th for a pre-op appointment to discuss the surgery
4) We have decided to seek a second opinion as this shunt surgery is more involved than the first (because of the position of the ventricle). Fortunately, we are at a large and highly regarded neurosurgery practice and have been blessed to be surrounded by brilliant surgeons
Here's how you can pray:
1) That God will give Pierce's neurosurgeon wisdom as he reviews Pierce's scan and decides the best course for surgery.
2) Pray also for wisdom for the other neurosurgeon we've requested a second opinion from. He comes highly regarded and is notorious for being more aggressive with surgeries in hopes to avoid shunts. We are hoping that Pierce will be a candidate for a newer, more advanced procedure that would allow him to avoid a second shunt catheter.
3) For Pierce to remain free of symptoms giving us more time to sort through our options.
4) Finally, for peace and wisdom for Nik and I. The neurosurgery world is full of gray areas and we've learned that quickly. Pray for wisdom and clarity as we seek the best option for Pierce.
Thank you so much for your continued prayers for us!
Today we took Pierce for a rapid-series MRI to check on the status of his shunt. Nik went through the MRI with Pierce and said it was so pitiful because it was so loud and Pierce was terrified of the sounds. But we're so proud of our brave boy who laid still with Dadddy while they got the pictures they needed.
We really felt confident that things were going well- no infections, no symptoms to point to a malfunction and his head growth has been tracking normally.
So we were taken back by the unexpected results: 4th ventricle enlargement. This basically means (and we're still processing it all, so I may not get this right) that Pierce's fourth ventricle, the one that sits deep in the brain, is not draining properly and that it has become trapped. 4th ventricle enlargement can affect balance and coordination, which may explain some of the reason why Pierce has had a hard time getting coordinated in his motor skills (though we'll never really know if it's related to this or just his extreme prematurity).
What this also means is that we're likely headed in for round 3 in brain surgery. Pierce's neurosurgeon is out on vacation this week (go figure) so we will have to wait until next week to see what his recommendations are, but we were told that these results most likely mean surgery in the near future.
While we are so saddened by the thought of our boy enduring yet another surgery, we are trusting in God's plan and know that He is still at work.
Would you please pray for us to have peace during this time? Also pray that Pierce would not become symptomatic during this waiting period.
One more note: last week I (Lindsay) had the opportunity of sitting down with Eric from New Life 91.9's morning show to share our story. Our segment will air tomorrow morning shortly after 7am. If you're out of town, you can listen online by going to their website: http://www.christiannetcast.com/listen/player.asp?station=wrcm-fm
Thank you for walking this journey with us. We are so grateful for all of you.
Ever wonder what therapy with an 18 month old looks like?
We have been doing more and more therapy at home since isolation season started (Just heard of a confirmed RSV case in CLT--yikes!). So the other day we went outside to play with leaves.
Yes, leaves.
Pierce hates leaves. Well, really he just hates the texture of leaves. But we found he really likes the sound of them crunching. And he enjoyed a few bites as well (what can I say, the boy will eat ANYTHING!).
I realize it's been a LONNNG time since I updated y'all on Pierce. I mean, I know I've checked in, but I haven't been great about keeping up with his weight, length, etc. Things have been so busy this summer and I sort of skipped his 15 month appointment (whoops!).
But today, we went in for his first round of Synagis shots (poor babe has to now get 2 injections at a time) and his flu shot and we were finally able to get some stats on the boy.
Age: 18 months (14 months corrected)
Weight: 21 lbs 6oz
Height: 30.5 inches
Favorite Words: Baby (without a doubt, his absolute favorite), bye bye, hey, hi, mama, dada, bebe (his blankie), baba (his bottle)
Favorite Signs: Water, Milk and Eat (the others have slowly disappeared)
New trick: finding certain body parts (he's great at finding his chin, arm and belly)
Ok, enough bragging.
After our visit to the pediatrician, we went to the hospital to check in with his pulmonologist. The good news is that his lungs sounded crystal clear! Surprising given that he just had bronchiolitis. The bad news: we have to continue the steroids (Pulmicort) through the winter to condition and protect his lungs. More bad news: they confirmed that we will need to stay in isolation through April 2013 and then went on to say that Pierce needed to be kept away from group settings (of children) until he's closer to 3 years old. 3 years old. My heart sank. Just when we thought his lungs were improving (and they are!) and that we were almost there... bam. Another year and a half before our boy can be a normal kid, hanging out in the church nursery.
And then reality sank in. I realized that as much as I want him to hang with his pals and other kids his age, I really, REALLY don't want to see the inside of the hospital unless we're going for a casual visit to see old NICU friends.
And so, we chug along in isolation. We've got big plans for this season. Lots of therapy. Lots of projects at our new house. And lots of plans for our non-profit, Pierce's Project. And of course, lots of blogging!
I took this video tonight as Pierce was playing after dinner. Look at how well he's using his left hand. May not seem like a big deal, but this is the result of LOTS of therapy hours. Notice how he catches himself from dropping it multiple times. So proud of you P! (Thanks Nana for a new favorite toy!)
I felt that message was screamed loud and clear to me last week. Not one, not two, not even three, but 4 of our micropreemies were sick last week with colds...mine included. Seriously, one week into the season and the isolation kids are sick? This is going to be a looooong winter.
But, we are thankful. On the first-third days, Pierce was wheezing pretty bad. He held his sats good until the 4th night. By then we had started Pulmicort, Albuterol and the dreaded oral steroid, Prednisone. Thankfully the steroid cocktail did it's trick and by the 5th day, his wheezing was hardly noticeable.
We were warned that in micropreemies colds can tend to drag on for ages. That's because their immune systems are weakened and they can't fight off the germs like a healthy child.
And so, we're on day 10... and the cold is still going strong. Lots of snot. Lots of coughs. Lots of steroid treatments.
And with every day, sometimes hour that passes, I find myself so, so thankful we've entered isolation season. Every time I start to get restless or bored of sitting inside, I want to think back on this yucky time. Remember why we're playing it safe.
Will you please pray that Pierce's body will be able to kick this cold out soon? And pray for the health of his other micropreemie friends, specifically Noah, Alli, and Cohen who all dealt with colds last week.
October 1st. The official start of RSV (cold/flu) season in Charlotte. The official start of Pierce's second isolation season. The official return to blogging (sorry we've been MIA, we've been enjoying the long, warm summer days!).
Pierce had his last hoorah this past weekend- My brother and Emily tied the knot.
Every micorpreemie is different, and each have different recommendations from their doctors on how their parents should handle this dreaded season of sickness. For us, we're dealing with a severe case of Chronic Lung Disease. Pierce has so many factors stacked against him when it comes to the respiratory department- he didn't receive any steroids before birth, he was mechanically ventilated for 2+ months, he required oxygen for over 9 months after that, and to top it off, at his last pulmonology appointment, his chest x-ray showed one of the worst cases of lung disease his doctor had seen in a while. Because of this, the doctors have recommended two years of RSV isolation. We have one down (last year) and now are ready to tackle season 2 head on.
What does the start of this season mean for us? This means no more casual outings, no more church services, no more dinner dates, no more Target runs... ah, the list could go on and on and writing it makes me long for more summer days as I remember all the fun we've had! Just about the only thing that Pierce will be allowed to do now is go to therapy and doctors appointments. It also means the start of the monthly Synagis shot (this shot lowers his chance of contracting RSV).
Of course, this year, Pierce is much stronger and for that we are so thankful. We will probably go outdoors a lot (hoping for another mild winter like last year!) and find activities that we can modify to fit his needs.
Last year, I posted this list of things that helped us survive the long season... I'm sure many of them will be things I can rely on again this year.I'm really looking forward to doing more skype playdates because it allows me to connect with friends from all over the country. (Email me at thepreemiepierce@gmail.com so that we can set up a "play" date!)
Would you please pray for us as we start this scary season? And pray for Pierce's continued health? Pray also for his many other micropreemie friends who are also entering this season. And pray for all of their parents who are forced to deal with the hard task of caring for a medically fragile child.
Many thanks for walking this journey with us,
Lindsay
Want more info on preemie lungs and the dangers of RSV? Visit Life with Jack for this great blog post
Here's what we've been working on the past few days:
I stepped in to help him (he's used to having his helmet on so he'll carelessly fling his head around) and this is the response I got. Our boy definitely has a "I can do it myself" attitude.
P is starting to figure out this whole sittin' thing.
Prayers that we will cross off this milestone soon would be greatly appreciated.
Off to bed... lots of ABM therapy this week. Night y'all!
The past couple of weeks have brought with them the addition of some new accessories. Accessories are not something we aren't used to around here... oxygen, monitors, etc...
So we've now traded the past ones out for 2 new things: a cranial band and glasses.
I'll admit these 2 additions have made me a bit sad. It breaks my heart that our little guy now has to wear even more gear. That he can't just be "normal." But, in light of all we've been through, I understand that these things are minor in comparison.
When we got his cranial band last week, I was so bummed with how "medical" it looked. It was white and sterile. I knew we wanted to decorate it. I knew we wanted to make it unique. Fortunately, we have this absolutely AMAZING and talented woman near us. Y'all...she's so talented. Seriously, don't know if I have ever met such an artist!
So today, I headed to her to get our band spiced up. And boy, she didn't disappoint. Check out the results:
BEFORE
AFTER
Leigh added this. Could there be a more perfect quote for our miracle boy?
Love the way she tied in Pierce's Project logo!
And here's our handsome boy modeling his new gear:
Special thanks to Leigh from Treasured Interiors. Highly recommend her for all your personalized painting needs! Check her out on her website: http://www.treasuredinteriors.net/
We're back from DC and boy did we have a great trip! For those who don't know, we headed up there to see Carla, a highly trained PT/ABM practicioner.
I'm going to try to recap our week:
The first day was filled with lots of driving. 10 hrs to be exact. To our surprise, Pierce did wonderful and with the little help of a portable dvd player, shed no tears the entire trip!
We stopped in Roanoke for lunch and had the BEST chicken and waffles.
Then it was back on the road. We arrived in town around 8 that night, just in time for bath, bottle and bed.
The next morning, we started therapy bright and early. Many of you have asked how our lessons are scheduled. The way ABM works best is to do two 30-45 minute lessons twice a day over the course of 3-5 days. So everyday we spent approximately 1.5 hrs with Carla.
We loved Carla! And so did Pierce. Pierce responded so well to her techniques and within the first few lessons, was doing things we've never seen before.
The first few lessons, we worked on getting P some variety in his movements (one of the ABM essentials). He loved this particular "trick" Carla showed us where his pelvis was elevated using a foam noodle.
Carla also showed us a way to hold Pierce so that he feels the weight throughout his entire body:
We learned lots of new ways to encourage Pierce to add variety to his daily movements. I really wish I had taken the camcorder to document the entire process.
On our day off, we headed into the city. Pierce loved touring around and seeing all the people and lights. It was the most action he'd seen in his entire life!
He especially loved our trip to the Shake Shack (thanks for the recommendation Jessi!) because he was able to sample his first french fry!
About halfway through our trip, Pierce really started finding his feet and exploring them like never before!
And he also started resting his legs and moving his hips in ways we've never seen. Here's a short video clip taken during one of our last sessions:
After 6 days away from home, we were happy to get in the car and head back although we really, really didn't want to leave Carla.
Overall, it was a VERY successful therapy trip. We have seen Pierce really start to use and explore his left hand and it's so very exciting to watch as his brain begins to map new pathways.
Oh, and did I mention that by the time we were home, Pierce was rolling side to side with ease? He won't let me capture him on camera, so I had to video him via the baby monitor :) Shh... don't tell P I'm watching!
Please continue to pray for Pierce to begin adding variety to his movements and that soon he will be truly mobile. Pray also for us as we continue with ABM therapy (we're ramping up to 2x/month) in both Asheville and now in DC. Pray that God will use these therapists to help Pierce and that He would also providing the funding to make these trips possible.
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