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!

RSV isolation top 10 list

Now that RSV season is coming to an end (yeah!), I thought it would be neat to create a top ten list to reflect on some of the things that helped me survive these past 8 months of isolation. Hopefully this list will be a resource for parents who are new to isolation and wondering how they are going to survive this next season of their lives.

Before I start, I'd like to preface this list in saying that isolation wasn't really that bad. Sure there were moments (and many of them) when I wanted to pull my hair out. There were times when I found myself telling my husband that isolation was equal to a life in prison. And still, other times that I found myself not showering for days and wondering if I'd ever wear anything but pajamas ever again. But for every bad time, there were far more good days. Isolation has also been good for my soul- it's been a time to heal from our traumatic NICU days. Times when I was so overwhelmed and thankful for Pierce's life. Thankful for this opportunity to spend so much time with my baby. To soak up every ounce of his babyhood without the daily hustle-and-bustle most new moms face. And I must add, it only took me one trip out with a medically-fragile child to quickly see that staying at home beats the alternative (clorox wiping everything, sanitizing 546,769 times and keeping your baby's car seat covered at all costs).

And so, here it is. My list. The top ten things that helped me survive our first RSV isolation. (click on the images to enlarge)

Oh and while you're at it, pop over to Life with Jack and check out their list of tips for surviving RSV season.

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.

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

Reminders of the Past

“There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.” -Harry Crews

 

We all have them. Some big. Some small. Some inside. Some outside. Scars are an interesting thing- reminders of where we've been, what we've been through and how far we've come. Those we wear on the outside nakedly display to the world our past. But they also offer opportunities for conversation- an opportunity to share our own experiences with others. So why my fascination with scars today?

Every time I bathe my sweet baby boy, I can't help but look at his scars (and they are many) and remember snapshots from the days he earned them- the highs and lows of our NICU journey are represented on Pierce's body. I consider these scars symbols, which help me to remember the important things in life and a constant reminder of how fragile our lives are. His scars give us an incredible opportunity to proclaim the goodness of our Lord to any who inquire. I've watched time and time again at how God has used these very scars to bring nurses, drs, and other listeners to tears.

In a way, I'm almost glad he has them. Not only do they make him unique, they are also simple reminders of how far God has carried him (and us) throughout these past 8 months. They offer perspective. But more importantly, they offer hope. Hope for Pierce's life (in reflecting on how far God has brought him) and hope for others who are faced with similar situations ("With God all things are possible.")

And while I'm sure he'll gain more scars as he grows (he is a boy after all!), I thought it'd be neat to share with our readers (especially those who will remember praying for him while he was earning these scars) some of the marks God left behind to remind us of Pierce's journey:

Because Pierce's skin was so fragile (almost jello-like in the beginning), the leads that they placed on him to monitor his vitals did significant damage to his skin. Many people assume he had a skin graph, but this is just how it healed.

Above Pierce's belly button, off to the left, you can see his scar from the VP shunt. 

 

Under his left armpit is the scar from his PDA ligation surgery.

Another scar that resulted from underdeveloped skin.

He has a couple on his head from the VP shunt and the VAD, but because we have had significant hair growth (yeah!), I couldn't get a clear picture.

It is my prayer that as Pierce grows he will wear these scars proudly and use them as an opportunity to tell all who ask about our God's faithfulness.

Much love,
Lindsay

Questions

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18


Will he be able to walk? Will he be able to talk? Will he be able to learn? Hear? See? And run? These questions run through my mind as if I pressed the repeat button on a cd player. Literally, every day, not long goes before one of these questions enters my mind. Then, what usually follows is a series of intense emotions- fear, pain, grief, sadness, anger. I find myself growing bitter towards those who have healthy children. They never have to worry about those things. They go about their day, posting casual photos on facebook... "Oh, Johnny found his toes." Great. "Johnny is rolling over." Great. "Johnny is walking." Great. Great. Great. It's SO embarrassing. Really, I shouldn't be this way. But I am. (Sigh) And I really regret having to confess this.

But what God has been doing in my heart is to incredible not to share, so I bare my soul. I'm sure many of you have been or are in the same position as me. I know so many of you reading this have children who have had less than perfect starts. Their lives have been filled with struggles and while little Johnny was finding his toes, our children were struggling to stay alive. You know what it's like to wrestle with these intense emotions. And maybe you're like me, finding yourself confused as to how to process these emotions in light of your faith.

People, usually those who have no clue what it's like to watch your child suffer, say things like, "Look how far he's come," and "He's going to be fine." And yet, those questions continue to repeatedly play. Over and over again. Again and again. Never-ending.

I know we are so blessed- Pierce eats great and as of now,  has fairly minor issues. We know how blessed we are that he has overcome great odds to make it home to us. But we are also so very aware that we are still in the beginning stretch of a marathon. We have come so far, yet have so far to go. So many of the above questions will not be answered for several years. Some days it feels like we are in an airplane, circling the ground, unsure of where where we will land. Will it be hot? Cold? Bumpy? Smooth?

I guess what I'm trying to say is that the fear of the unknown can be very overwhelming. But God is teaching me not to fear. To not fear the unknown demonstrates your trust in Him, in His goodness. I am also seeing the fact that I so often get stuck in the mindset that this world is it, so I better make it the best it can be. But that's not so. This world is not final. And because of Christ, this world is the worst that I will experience. So to fear something that is so temporary, so fleeting, reveals the disbelief in my heart. 

As I've wrestled through this, I've found my questions have started to subside. They're not gone, and I don't anticipate they will ever be. But they're not as terrifying. They're less intrusive. And instead of the questions, I'm remembering that God is good, He does good and He works things for good. So whatever struggles He allows us to endure, I am trusting that He will grant us the grace to make it through. And while I definitely think that the character of God demonstrates that it is ok to want the best for your child, I also find that it shows that God loves Pierce more than I could possible imagine and He wants what is best. But perhaps my definition of "what's best" has been wrong, not in line with what Scripture teaches. If Pierce can run, jump, laugh, and play but doesn't know Christ, what good is that? (Matthew 16:26) So tonight as I tuck Pierce in, my prayer will continue to be the same that Nik and I have prayed since he was born- that God would heal his entire body- his brain, his lungs, his heart, his eyes, his bones- but more importantly, that Pierce would never know a day apart from Christ. That is my prayer now and always.

Thank you for walking this journey with us.

Lindsay