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
Showing posts with label Pierce's project. Show all posts
Showing posts with label Pierce's project. Show all posts
10.22.2012
9.11.2012
Where we've been hiding
So we've taken a break from blogging lately. Life has a way of forcing that sometimes. For us, this has been a summer filled with therapy (which is going well! more details to follow), outdoor activities, major life transitions (new house, new job to name a few), and planning. Perhaps the thing that has kept us the most busy is the last on that list--planning. "Planning what?," you might be wondering.
Well, remember our little NICU project we started a few months back? Well, it's grown! It's grown and we've had to adapt, reorganize and continue planning. We are so excited at the thought of being able to serve every single micropreemie family that enters the doors at both the Hemby and Levine NICUs in Charlotte, NC (estimated 150 families). And we wanted to share with you more about how you can get involved. Please see our attached flyers and go to our facebook page for more info on our BIG event. We hope to see many of our blog followers there!
Well, remember our little NICU project we started a few months back? Well, it's grown! It's grown and we've had to adapt, reorganize and continue planning. We are so excited at the thought of being able to serve every single micropreemie family that enters the doors at both the Hemby and Levine NICUs in Charlotte, NC (estimated 150 families). And we wanted to share with you more about how you can get involved. Please see our attached flyers and go to our facebook page for more info on our BIG event. We hope to see many of our blog followers there!
6.15.2012
New accessories
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:
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/
Happy weekend friends!
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/
Happy weekend friends!
2.27.2012
therapy update
Last week was a busy week for us... filled with birthday celebrations, therapy, and drs appointments.
The back story. I spent most of the week doing lots of research in developing a "game plan" after our last neuro appointment. We want to provide Pierce with the most helpful form of therapy and we know that this window of time (while he is still young) is incredibly important when it comes to helping his damaged brain rewire itself.
So I figured that if I (an ABM amateur) was having such great success with this method, why not make ABM our primary therapy for awhile? We'd already had a great meeting with John, our local ABM therapist.
Decision time. After spending much time researching and contemplating, we've decided to make ABM our primary mode of therapy for awhile. I've talked with both our Early Interventionist and our Physical Therapist. Fortunately, everyone is on board.
When it comes to having a kid with special needs, it's important to remember that there are so many (and I mean countless!) avenues you can take to get to the same destination. Every baby is different. One may respond well to one mode of therapy, while another may do better in a totally different type of therapy. But the bottom line is: therapy is NOT a one-size fits all approach.
So for now, our therapy plan is going to start next week with a week-long intensive with John (our ABM therapist). After our intensive, we will continue/supplement with our bi-monthly physical therapy. This will most likely be followed with more ABM intensive sessions. This is not to say that our plans won't change in a few months, or maybe even within the next month, but for now, we have a game plan. And boy does it feel good to have some decisions made! But, if there is one thing I've learned throughout this process, it's that you can't think too far ahead. It's too overwhelming and almost pointless as you can never predict what may transpire.
How you can help. We'd love your prayers as we start this new endeavor. Prayers that Pierce will respond well to this therapy. Prayers for wisdom as we go. Pray also that God will provide the financial/practical resources for us as we travel to see John.
We are excited about this time...about Pierce's future and we look forward to sharing about next week's intensive ABM therapy sessions with you!
Also, many thanks to all who have stepped up to help out with Pierce's Project. It's amazing to see how many want to help out. Please be patient with us as we are slowly organizing this effort (while trying to juggle a new job, the last semester of Seminary, speaking engagements AND a high maintenance baby). Look for an update soon on the many ways this project is going to help the families at our local NICU.
Thank you for walking this journey with us.
Love,
The Franks Family
The back story. I spent most of the week doing lots of research in developing a "game plan" after our last neuro appointment. We want to provide Pierce with the most helpful form of therapy and we know that this window of time (while he is still young) is incredibly important when it comes to helping his damaged brain rewire itself.
Many of you will remember we took Pierce in December to an ABM therapist. Since then, I've been researching more on this method and have really found myself gravitating towards ABM (in place of traditional PT). I started trying out some ABM exercises with Pierce a few weeks ago and
have already seen a tremendous response. For instance, the tightness in his
hips/legs seem to have diminished greatly.
Check out these before/after
photos I snapped last week:
So I figured that if I (an ABM amateur) was having such great success with this method, why not make ABM our primary therapy for awhile? We'd already had a great meeting with John, our local ABM therapist.
Decision time. After spending much time researching and contemplating, we've decided to make ABM our primary mode of therapy for awhile. I've talked with both our Early Interventionist and our Physical Therapist. Fortunately, everyone is on board.
When it comes to having a kid with special needs, it's important to remember that there are so many (and I mean countless!) avenues you can take to get to the same destination. Every baby is different. One may respond well to one mode of therapy, while another may do better in a totally different type of therapy. But the bottom line is: therapy is NOT a one-size fits all approach.
So for now, our therapy plan is going to start next week with a week-long intensive with John (our ABM therapist). After our intensive, we will continue/supplement with our bi-monthly physical therapy. This will most likely be followed with more ABM intensive sessions. This is not to say that our plans won't change in a few months, or maybe even within the next month, but for now, we have a game plan. And boy does it feel good to have some decisions made! But, if there is one thing I've learned throughout this process, it's that you can't think too far ahead. It's too overwhelming and almost pointless as you can never predict what may transpire.
How you can help. We'd love your prayers as we start this new endeavor. Prayers that Pierce will respond well to this therapy. Prayers for wisdom as we go. Pray also that God will provide the financial/practical resources for us as we travel to see John.
We are excited about this time...about Pierce's future and we look forward to sharing about next week's intensive ABM therapy sessions with you!
Also, many thanks to all who have stepped up to help out with Pierce's Project. It's amazing to see how many want to help out. Please be patient with us as we are slowly organizing this effort (while trying to juggle a new job, the last semester of Seminary, speaking engagements AND a high maintenance baby). Look for an update soon on the many ways this project is going to help the families at our local NICU.
Thank you for walking this journey with us.
Love,
The Franks Family
1.27.2012
Our really BIG, really IMPORTANT announcement
We are so, so excited to share with you all a special project that is in the works.
But before we do that, a little background on why we're doing what we're doing: As I've spent countless hours dreaming and planning what I'd like to do to celebrate Pierce's 1st birthday, I've come to the conclusion that it can't just be your ordinary baby's first birthday. I wanted a way to give back. To help others in situations similar to ours. A way in which we could return to the NICU to celebrate how far God has brought us. So out of that vision was born an idea...a project- Pierce's Project.
So without further ado, we are happy to launch our new website
Will you please join us in helping to support other micropreemie families? And more importantly, would you consider praying not just for us, but for the many lives who are effected by extreme prematurity every day?
Much love,
The Franks Family
PS- our mobile site is not quite up and running, so be sure to check out the website on your computer!
But before we do that, a little background on why we're doing what we're doing: As I've spent countless hours dreaming and planning what I'd like to do to celebrate Pierce's 1st birthday, I've come to the conclusion that it can't just be your ordinary baby's first birthday. I wanted a way to give back. To help others in situations similar to ours. A way in which we could return to the NICU to celebrate how far God has brought us. So out of that vision was born an idea...a project- Pierce's Project.
So without further ado, we are happy to launch our new website
Much love,
The Franks Family
PS- our mobile site is not quite up and running, so be sure to check out the website on your computer!
1.24.2012
Neotech
Attn: all parents of kids using equipment, this post is for you!
If you're like me, you've had more than one occasion where your home supply company has given you a pretty decent headache while you're attempting to order the correct supplies for your child. Fortunately, I stumbled upon this amazing company that will go above and beyond in ensuring that parents get the right supplies for their children.
Background story: I heard about Neotech from the Graham's Foundation website. After seeing their products, I wrote Neotech and asked for a few samples. I also asked them if I could potentially buy some in the event that I liked them. They immediately responded and graciously sent me more than enough samples to last for a while (and let's just say they were much more generous than the supply company). They were so gracious and stated that they'd be more than willing to send extras if needed. The best of all, they didn't even charge for them!
In conversing with Neotech, they've made it clear that they love to help families in need and would enjoy working directly with the families to allow you to use their products. For preemies on o2- they make the best cannula holders. We've been using them instead of the Tender Grips and like them so much better. They're gentle on the skin and much easier to remove than the Tender Grips. We're also using their pulse oximeter wrap, which is a better alternative to what we'd been using (harsh medical tape).
All this to say, parents of preemies (or those who use home equipment for their kiddos), you must check this company out! If you're interested in ordering samples from them, you can email Judy at judy@neotechproducts.com. And please pass the word along to your friends, your home equipment and your NICU's (they make great products for the teeny tinies in the NICU).
One last word about Neotech, I have been so impressed with their generosity and the way in which they strive, not to run a business, but to truly help families and preemies. I know that their main concern is to create products that are safe/gentle for our babies.
That being said, I'd like you to know that they've already committed to helping us in our latest cause. What is that you might ask? Well, we are SO excited to share with our followers something we've been working on to give back. BUT it's not quite ready yet, so you'll just have to wait.
Check back on Friday as we will be unveiling our special project at noon (ET for all of our non-local friends)!
If you're like me, you've had more than one occasion where your home supply company has given you a pretty decent headache while you're attempting to order the correct supplies for your child. Fortunately, I stumbled upon this amazing company that will go above and beyond in ensuring that parents get the right supplies for their children.
Background story: I heard about Neotech from the Graham's Foundation website. After seeing their products, I wrote Neotech and asked for a few samples. I also asked them if I could potentially buy some in the event that I liked them. They immediately responded and graciously sent me more than enough samples to last for a while (and let's just say they were much more generous than the supply company). They were so gracious and stated that they'd be more than willing to send extras if needed. The best of all, they didn't even charge for them!
In conversing with Neotech, they've made it clear that they love to help families in need and would enjoy working directly with the families to allow you to use their products. For preemies on o2- they make the best cannula holders. We've been using them instead of the Tender Grips and like them so much better. They're gentle on the skin and much easier to remove than the Tender Grips. We're also using their pulse oximeter wrap, which is a better alternative to what we'd been using (harsh medical tape).
All this to say, parents of preemies (or those who use home equipment for their kiddos), you must check this company out! If you're interested in ordering samples from them, you can email Judy at judy@neotechproducts.com. And please pass the word along to your friends, your home equipment and your NICU's (they make great products for the teeny tinies in the NICU).
One last word about Neotech, I have been so impressed with their generosity and the way in which they strive, not to run a business, but to truly help families and preemies. I know that their main concern is to create products that are safe/gentle for our babies.
That being said, I'd like you to know that they've already committed to helping us in our latest cause. What is that you might ask? Well, we are SO excited to share with our followers something we've been working on to give back. BUT it's not quite ready yet, so you'll just have to wait.
Check back on Friday as we will be unveiling our special project at noon (ET for all of our non-local friends)!
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