Update

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.

Thanks for walking this journey with us!

Sensory Therapy

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!).

And there you have it-- sensory therapy!

Update on Pierce

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!)

Thanks for walking this journey with us!

Lindsay

Long overdue update

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.

Thanks for walking this journey with us.

Lindsay, Nik and Pierce

ABM Round 2

Last week we packed up and headed to Black Mountain, NC for another week of ABM therapy.

It was a great and productive week.
 
We are so, so fortunate to have 2 great therapists working with Pierce. Good therapists are sure hard to find so we don't take them for granted at all!

There's John, our ABM Therapist:

And Diane, our Physical Therapist:

Diane was so kind to drive all the way to Black Mountain (a 4hr round trip) for the day so that she could observe an ABM session. Diane has been so great about working alongside of the ABM therapy and she's taken so many opportunities to learn about this method- how amazing is she?! We really feel so fortunate to have such wonderful and talented people working to help our little guy.

We also had a great time staying with the Ellingtons. The Ellingtons have an amazing house in Montreat with views like this:

Cool fact: Their house is on the same mountain, right around the corner from Billy Graham's house!

Pierce thoroughly enjoyed meeting his Bibi and Babu (Swahili terms. The Ellingtons spent a good portion of their lives serving as missionaries in Africa. Dr. Ellington worked for Wycliffe translating Bibles. A few years ago, he was also one of my professors at Montreat College. To say they're a neat couple is definitely an understatement.)

We're already looking forward to our next round of vacation, um... I mean, therapy.

ABM therapy recap

We're back from our first week of ABM therapy! First and foremost, thank you all for your continued prayers as we embark upon this new journey. For those who are just catching up with us, we've decided to try out the Anat Baniel Method (ABM) of therapy for awhile (as opposed to traditional physical therapy). I must say, after our first full week of this therapy, I'm very impressed! No it's not a magical cure that cures all of Pierce's problems in a week, but boy have we seen some pretty remarkable changes!

Pierce's therapist, John was so, so good with him. My grandmother (who came up to help me out for the week) and I were so impressed with how gentle and patient he was. Pierce really took to him from the beginning and seemed to enjoy his time in therapy. Because ABM is a learning-based approach our main goal with therapy was to "turn on his learning switch" (This is one of the core principles of ABM). That means that while our traditional PT has been more focused on Pierce accomplishing the "normal" baby milestones (like rolling and sitting), our ABM therapy was more aimed at getting Pierce curious about the world and aware of how his body can move within space. John used gentle touch and movement to help rewire Pierce's brain. For instance, before we went in, Pierce had been keeping his left hand fisted and close to his chest. This was a sign of the brain damage that occurred when he suffered the brain bleed. So John used gentle touches, along with movement and variation (2 other components of ABM) to bring awareness to his left arm, signaling the brain to rewire itself and as a result, causing his left hand to become unfisted and more mobile. (The method is far more complex than this, but for time sake we will just leave it at that. For those parents wanting to know more, I'd highly recommend looking into Anat's website :))

Before I tell you our results, I wanted to share with you a few video clips of our time spent with John.

And here's a snapshot of what we did during our down time, including the amazing views we had from the house. We were so blessed to be able to stay at the home of one of my former professors (special thanks to the Ellingtons!). It was so, so nice to be back in Montreat (where Nik and I both went to college)- definitely felt more like a vacation than therapy!

Ok, now that you've got an idea of what we are up to, here's the part you've all been waiting for...the results.

Remember how I mentioned earlier that ABM is not a miracle, cure-all? Well that is certainly true, BUT the changes are there. They are many. And while subtle, they're BIG steps in Pierce's road to recovery. I'm confident of this.

Here are the things we've noticed that resulted from our first week of ABM: 
-Perhaps the biggest change in Pierce has been his personality. It's hard to pinpoint, but he's interacting with us in a whole new way. Nik (who didn't get to go with us) couldn't believe how much older he is acting. He's definitely more alert and aware of what is going on around him.
 -The other startling change was that Pierce now freely moves his left arm. While he still fists it every now and then, I'd say a good 75% of the time he has it wide open and is moving it freely. This is a huge improvement from before we went.
-Because his left hand is moving with greater ease, we've noticed Pierce really taking off with his baby signs. He's now signing 5 signs on a regular basis (water, mommy, more, eat and all done). AND he's waving "hi" and "bye"
-Also in the language department: we've noticed Pierce experimenting more and more with his own voice. He's making all kinds of new (and hilarious!) sounds these days
 -Another change we've noticed is the change in muscle tone in Pierce's legs. His hips are much looser and as a result, his legs are becoming easier to move.
-Pierce is also rolling when assisted with much great ease. Before he felt like a stiff board. Now, he knows to relax and tries to coordinate his legs, arms and head. While he's not rolling yet, I feel confident it's just around the corner for him!
-One of the BEST things to come out of our time up there is that Pierce has really started to belly laugh. You may have noticed in some of the videos that Pierce was laughing. I've heard it said that often times during ABM, kids will find their new found freedom quite hilarious. They often start laughing throughout the session (this was true for Pierce!). Well, once we got him home, he really started to open up. I'm talking all out baby giggles. We tried to capture this on video last night, but our cameras wouldn't cooperate (isn't that the way it always goes?!).

Because we've seen such remarkable changes in Pierce, we've decided to keep ABM as our primary method of therapy for awhile. This means we will be making trips to see John every 4-6 weeks. As of now, we will keep our in-home physical therapy at the usual 2x/month and use it as more of a supplemental resource. We will not be adding any OT or Speech at this time.

How you can pray:
1. Pray for continued health as this remains our first concern for Pierce. We are close to the end of RSV season, but Pierce still has one more Synagis shot to get before its officially over.
2. Pray that Pierce will continue to learn and integrate all that he learned this past week into his daily routine at home.

Thank you so much for walking this journey with us.

Lindsay

ABM Therapy

What does it take to entertain a baby in the car for over 8 hrs and have a fun time while doing it? Lots of bottles, a car seat mobile, pacifiers, a boon dispensing spoon along with plum baby food, lots and lots of wipes for the mess that ensues with the aforementioned products, and a sense of humor. Oh yes, throw in a really, really good, super easy baby (yes, our baby is the best and I'm bragging on him!).

Yesterday we loaded up at 630am and headed to Black Mountain, NC to meet with a new therapist. While we didn't plan to spend the ENTIRE day in the car (it only takes 2 hrs to get to Black Mtn from CLT), we didn't take into account the chance of rain, and lots of it. We had planned to take Pierce on a walk through the town that Nik and I first met and to ride through Asheville before heading back. But alas the rain caused us to abandon the idea of getting out, stretching our legs and enjoying the beautiful mountain scenery. We did however manage to drive through the college campus, see several of our friends from Montreat and head over to a friends house in Asheville. Oh AND we got to eat the best BBQ ever. I say all this to say that it was a great trip and it was so nice to be back in one of our favorite areas.

Ok, now on to what everyone is waiting for: our review of ABM therapy. I must admit, going in to this I was kind of skeptical. Not many have heard of ABM therapy and while those who have claim amazing results, I wasn't so sure that they weren't just desperate parents who were getting scammed by con-artists posing as therapist. I had heard some amazing results- from babies who weren't rolling over before that immediately started doing it after the session to children who are wheel-chair bound learning to walk, but I couldn't help but wonder, if this is such a great form of therapy, why isn't everyone doing it?

Nevertheless, we decided to give it a try, to take the trip to meet John and to put our assumptions aside until after we met with him. Our first impression with John was that he was warm and caring. He carefully listened as I outlined Pierce's rather lengthy medical history as well as what the previous physical therapy assessment had said. We laid Pierce on a table, in a comfy room with low-lighting and watched as John carefully and gently moved his hands along his body, intently studying Pierce's body. He examined many things- how Pierce's lower back moves, the symmetry in his limbs, and the ability for his feet to push when placed against a firm surface- all of this was done while Pierce was lying on his back. The entire time, Pierce was just as happy as he's always been and definitely at ease. If John did something that he did not like, he simply stopped and moved on. Gentle...that's the best word to describe this approach.

But if you're like me, you're probably thinking, ok if it's SO gentle, could it possibly be doing something? And therein lies the key to ABM- one of the key essentials to this therapy is to make changes SLOWLY so that the child's brain has time to process and absorb what they're learning about their body.

Here are a few things that really stand out about our first session: we were intrigued when after a few minutes of being with John, Pierce started moving his left leg more than he was at the beginning of the session, amazed when he had him almost rolling over in a matter of minutes but SHOCKED this morning when I got him up and noticed that his right eye is no longer turning in as much as it has been (something that the eye dr said would likely require glasses to fix). It's strange because I was so skeptical, but there's really no denying the change in Pierce. His eyes are now moving together instead of separately. They were not doing that yesterday morning.

Our therapy session was nothing short of amazing, but perhaps John's evaluation was even better. He told us that he was quite amazed with how well Pierce is doing considering his history. He noticed no stiffness or weakness in either side of his body and no significant problems. In fact, he really couldn't find any reason for us to continue ABM therapy at this point. What he recommended was us keeping a close eye on Pierce's development. He threw in that we should not become so obsessed with him following the "normal" pattern of development (rolling at 4 months, sitting by 6 months, walking by 1 year, etc), but rather we should watch Pierce's trajectory of development. He said that as long as we see an upward trend, Pierce does not need to see him.

I really can't say enough about John as a therapist. In a way, I'm almost sad that we won't be adding him to our regular routine as of now. But I AM so thrilled to hear that Pierce is doing so well and to know that we now have a great go-to resource if we ever grow concerned with Pierce's development. I appreciate his honesty and character- he could've easily taken advantage of two parents eager to do anything or buy anything to help their child thrive, but he didn't. Instead, he offered his vast experience and knowledge and let us know that if we ever had any questions or concern, that we could always call or email.

At this point, I'm fairly torn. I know that we will proceed with meeting with our new physical therapist and likely start the 2x/month. However, I really REALLY enjoyed the individualized approach with ABM and will find it very hard to continue in PT if I find that Pierce gets labeled and thrown in a box. One thing I know for sure is that if Pierce develops anything that is concerning to us or his dr, the first place we are headed is back to do ABM with John.

Thank you all for your prayers. Know that Pierce's development is really nothing short of a miracle from God and a result of your many prayers. I ask you to please continue praying that his little brain will fully heal and recover.

And for you preemie mommas in NC, if you'd like information on John and the ABM method, you can go to his website here for more information. We would highly recommend him!

Much love, Lindsay

Therapy, here we come!

Here's the latest:
Age: 7.5 months (3.5 months adjusted)
Weight: 15 lbs 1.5 oz

Last week, Pierce was assessed by a physical therapist for the first time since leaving the NICU. Having been a professional nanny before having P, I totally went in this with the understanding that he more than likely would choose that one morning to be "off" and not himself. And wouldn't you know, I was right! It really wasn't that bad, but it wasn't great either. He was so sleepy when the therapist arrived that he decided that making eye contact and holding his head up were just "optional" and that he'd rather not participate. Instead, he bobbed his head along, while closing his eyes and dozing off. I probably would have been much more frustrated had I not have had such low expectations going into this. I know from experience, kids NEVER do what you want when you want them.

I say all that to say that the therapist wasn't really given a good picture of how P acts 90% of the time. Fortunately she was able to observe him after a cat nap and noted that he did much, much better in the areas of eye contact/tracking and head control. But unfortunately, she had already done the test and given me the results. They weren't horrible by any means. In fact, I was pleased he did so well considering he was falling asleep for most of the exam. She rated his head control at a 2 month level (although came back at the end and said he was right on track with his adjusted age- 3.5 months) and said everything else looked great. She mentioned that she noticed a little bit of stiffness on his left side, which would make sense because his bleed was worse on the right. In addition, I mentioned to her that Nik and I have noticed Pierce has started preferring his right hand over his left, which would further the notion that he probably does have some tightness on that side of his body. Other than that, she said he looked great. And at 15 lbs, he's a whopper of a micropreemie. So needless to say, she was very pleased with how well he eats.

She did recommend that we start physical therapy as soon as possible because of the tightness she saw as well as the mere fact that he was so early, had a severe brain bleed and therefore is at risk for many things. We are totally on board for that because we feel the earlier we start the better.

However, I couldn't help notice how Pierce seemingly got peg-holed, labeled and thrown into "the system." For some reason, I really wasn't at peace with the decision to have traditional PT 2x/month. I know it may sound strange, but I really just feel like right now (and this may definitely change), this isn't the right approach for P. So I started exploring, talking to our early interventionist, to other parents and stumbled upon the Anat Baniel Method. For those who don't have time to research it, it's basically an learning-based approach that combines gentle chiropractic techniques and movement to help retrain the injured brain to rewire itself naturally. That's an oversimplified definition to say the least, but it at least gives you some idea of what we're considering.

So after a lot of research and prayer, we've decided to take Pierce to Black Mountain, NC to meet with the ABM Specialist. I'm really so excited. Partially because Black Mountain/Asheville is where we moved from, and it will be so fun to get out of the house for a day or so, travel up there and visit one of the most beautiful cities I know. I'm also SO, so excited because I've heard from several preemie parents that this therapy is really beneficial. Anyways, it's a start.

As of now, we will likely go the ABM route as our primary means of therapy (this may all change after we go next week, who knows?!), and keep the traditional PT to once a month (I'd like to still keep that door open so that we can easily transition if we feel it's best). Next week, we will be taking Pierce for an initial consult, get him assessed by the therapist and go from there. If the therapist thinks we should embark on therapy, we will likely be headed back there for a week long intensive session in a month or so. (The way the therapy works best is to do two 45 minute sessions a day for 5-6 days straight.)  But all of this is still dependent on what issues, if any, the therapist sees when he examines P.


How you can pray: 
1.For clarity and guidance as we meet with the therapist next week. Also, for wisdom to be imparted on him as he assesses P and we make a game plan.
2. Please pray for Pierce. Every night we pray for his entire body, from his head to his toes, but you can specifically be praying for healing in his brain, his eyes, and his lungs.
3. Pray for us as we try to create a feasible budget to live off of as we look at paying the out-of-pocket costs for the ABM therapy, not an easy task to do when you are living on a fixed income and have a full-time grad student. But we want to say that we are SO, so thankful to the many who so graciously donated money, both through the initial fundraiser and through the golf tournament. Please know that the Lord has used you to alleviate our burden.
4. Pray for Nik as he is busy finishing up his second to last semester at RTS.

Thanks for sharing in this journey with us!

Lindsay