2.15.2012

10 month update

It's hard to believe that our little guy hit the double digits on Sunday. He's now 10 months old (6 months adjusted). I haven't had a chance to weigh him in a few days, but at last weight check, he was 17lbs 9oz! Pierce has been adding new skills everyday. He's such a fun baby, and has such a wonderful personality. He's really enjoying signing and has become so much more interactive now that he can communicate with us. He does "more" and "eat" like a champ, and "milk," "water" and "all done" are done less frequently. It's so fun watching his vocabulary expand. Last week we skyped with our friends- Noah and Jenny (Noah's mom). Pierce loved seeing his buddy on the screen. Jenny and I are both dreaming of the day when Pierce and Noah can actually meet face to face! But it was still so good to have some adult interaction via Skype.

Pierce loves to look at his books! Check out how well he's sitting here. 


We've heard from several therapist to expect his physical (gross motor skills) progress to be slow while his speech is rapidly expanding. They explained that since his brain is rewiring itself as it heals, it takes a lot of energy to accomplish basic tasks and learn new skills. Even though our language skills have been our biggest advancements, we are continuing to see improvement in the physical arena (even if it is painfully slow). Pierce isn't too far from "prop sitting." He can almost do it. If he would just bear a little more weight on his arms, we'd have it!

He's not a big fan of sitting in the bumbo.  But with a little coaxing and a Baby Einstein movie, we're good to go!


He wasn't much help, but he looked so cute "helping" me with the laundry. Again, check out those sitting skills! (Also learned a lesson: laundry time should not directly follow a rather large bottle... otherwise, the laundry has to get rewashed)
Neuro update: 
Yesterday was a rough day for us. I'll be honest, I debated even blogging about this. The emotions are just too raw, too personal and sharing them with the world can be scary. BUT we want your prayers. And we want to share as many details about this journey as possible in hopes of encouraging and helping parents in similar situations. We took Pierce for a NICU follow-up clinic yesterday. This was his first visit with a neurologist (up until this point we've only seen Pierce's neurosurgeon). Without going into too much detail (it kind of seems like a blur at this point), she zeroed in on all of the "red flags" and high risk factors that Pierce has working against him. She focused on his limitations, and really ignored his progress (I honestly think she thought I was lying about the signing! Should've brought the videos!) In more or less words, she told us she'd hold off on making a diagnosis at this point, but implied that a CP diagnosis was likely at our next visit.

You're probably wondering what this diagnosis would mean. And to be honest, I can't give a really good answer. CP is a broad-spectrum disorder that could mean anything from having slight weakness in one hand to severe debilitating loss of body control. I realize that many of you have questions about this, and I know I would before this happened. I'll try to simplify the situation. Basically, imagine a person having a stroke (this is the brain bleed we refer to in Pierce's situation). Then imagine the weakness/tightness of muscles they have on the side the stroke affected. Now I'm sure you've all heard of stroke patients having to do physical therapy to retrain their brain to help them use their weakened side. Well, in Pierce's case, the situation is pretty similar. A CP diagnosis really just refers to those same symptoms you'd see in a stroke patient. (I'm totally over simplifying this to help our readers understand. For those in the medical field or those who have children with CP, don't judge :)) In addition, a CP diagnosis doesn't really mean a hill of beans. At least not now, not to us. It does means that he has brain damage from the bleed that has led to tightness or weakened muscles, BUT there is so much hope. With physical therapy and lots of it, Pierce can (and I honestly believe will) be able to do everything imaginable. He will just have to work harder than most children. There is no way to predict what Pierce's road to recovery will look like. We hear stories all the time of children overcoming the odds. We hear of others with significant struggles. But the bottom line is: there is no way to predict what Pierce's future will look like. But if we are honest, do any of us know what our futures look like? I know where I am today is not what I imagined for myself when I found out I was pregnant 16 months ago.

Back to the appointment- Now we knew that Pierce has some weakness on his left side and some tightness in his legs (we have in home PT currently), but we were far from prepared for her doom and gloom speech (I mean, does anyone really benefit from talks like these?). To give her credit, she really was only repeating to us the basic "book" knowledge that she had been taught (and we've heard over and over again). BUT we've been so blessed to have so many optimistic drs surrounding us, it was odd to finally hear someone so negative. What I wanted to tell her was what I heard over and over again the NICU- "Pierce writes his own book." I know that every parent has the initial reaction of denial. You want to defend your child, tell the drs that they will beat the statistics. But, I also know that Pierce has beaten so many odds and I fully expect that he will continue to do so as he grows. So I guess what I'm trying to say is that I'm learning to just "listen" and take the negative opinions with a grain of salt.

Still it can be so heartbreaking to hear the statistics, to hear the odds and know that your child likely will be left with some lasting effects of their prematurity. We know this. We also know that God has worked many miracles in Pierce's life and trust that He will continue to do so. As I listened to her explain the risks, my mind wandered off... remembering the many times we've been told similar things. I've developed an amazing ability to tune out drs while pretending to listen. It's as if I'm hearing and retaining their words, but I do not allow myself to feel the implications of what they're saying. Immediately however, I was reminded of one thing- the only thing that can bring you peace in that situation: our hope does not lie in what Pierce's brain scans show. Nor does it come from what a doctors analytical predictions might be. Our hope comes from our God. And we have learned and trust that He is at work in Pierce's life.

There are days when I feel so broken, my heart so heavy. I've been through so many of those days this past year and yesterday was surely one, but I've come to realize to appreciate them. That may sound odd, but I really do appreciate them. They refocus my attention on the things that are eternal- on Christ and his work on the Cross and the hope that the Gospel gives to Pierce. This life is so temporary, so fleeting. It will end so quickly. And whatever trials Pierce endures in this world will quickly fade. That does not mean it eases the pain a mother feels as she thinks of her child struggling to accomplish basic milestones. But it does grant me peace. A peace that surpasses human understanding.

And so this morning, I did not wake in fear (although I'd be lying if I said the fear of the unknown future isn't something I battle almost hourly, especially after appts like we had yesterday). Instead, I woke knowing that I could trust my good and sovereign God with the future. How fitting is it that my devotion this morning said this:

"Come to Me with all your weaknesses: physical, emotional, and spiritual. Rest in the comfort of My Presence, remembering that nothing is impossible with Me. Pry your mind away from your problems so you can focus your attention on Me. Recall that I am able to do immeasurably more than all you ask or imagine. Instead of trying to direct Me to do this and that, seek to attune yourself to what I am already doing. When anxiety attempts to wedge its way into your thoughts, remind yourself that I am your Shepherd. The bottom line is that I am taking care of you; therefore, you needn't be afraid of anything. Rather than trying to maintain control over your life, abandon yourself to My will. Though this may feel frightening- even dangerous, the safest place to be is in My will." (taken from the Jesus Calling)

There's a song that's been one of my favorite for the past few weeks. Yesterday, I found myself gravitating towards the lyrics as I reminded myself of the truths found within. Ironically, I just heard on the radio that the singer, Aaron Shust and his wife just had their 3rd child who was born with Down's Syndrome.

How you can pray for us: 
1. Pray that the tightness in Pierce's legs and weakness in his left arm would gradually decrease
2. Pray that Pierce rolls soon! and is able to meet other gross motor skills
3. Pray for continued protection against RSV and other illnesses
 4. Most importantly, pray for us as we consider the best approach to therapy (there are so many paths we can take it can be mind boggling to navigate through all the options!) and pray that God provides the financial resources for the therapies that are not covered by insurance.

Thank you all for your continued prayers and support!

Christ is All,
Nik, Lindsay and Pierce Franks

10 comments:

  1. Lindsay, this post is inspiring! God is definitely using you to reach people! Ironically, I'd been wanting to find the artist to the song you attached at the end! God is soooo good! Praying for you and your sweet family!

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  2. Lindsay - I am so impressed by you! You are seriously a thousands times ahead of me than I was when Jack was 10 months. I feel like God has given you a wisdom beyond your circumstances and it truly shines! To be honest, I got a little mad when I read about your Neuro appointment. P is only 6 months corrected!!! Some doctors lack a personality and way with words. I'm really sorry. I am praying for P and for you guys. I know its such a tough road to travel, always trying to navigate the best path when it comes to therapy and such. Sending all our love.

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  3. Lindsay, I just feel in my heart that he is going to roll. There is something in me that just knows it. Pierce is a very determined person. Like Jessi said, he is only 6 months corrected and there are term babies that don't roll at that age.

    As I read this my heart dropped in my stomach because it was like I was there with you hearing all the things the Dr said. I know the unknown is scary and you are right, no one can predict their future.

    I will pray for Pierce and you guys. I hope you are updating that he rolled on this blog very soon. He has come so far and babies do things in their own time, regardless of age.

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  4. I'm not the praying type but just looking at the medical marvel you call a son is proof enough that he is stronger than what the books say will happen. I would remember what the doctor said while trying to find another doctor who will fit you better.

    Happy 10 months Pierce!!!

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  5. I love how honest yet faithful you are in your writing. I seriously wish doctors and nurses would receive more training on how to talk to parents. We heard so many doom and gloom predictions in the NICU. There is a way to be honest with parents without being so negative. I'm sorry to hear you had to deal with a negative doctor. I think Pierce is doing amazingly well. My twins were not signing at all at his age. They do seem to fall behind in one area when they are focused on another. For my twins, gross motor skills came first, and it seems that speech/signing is just now coming to surface. I am so impressed that he is already signing. You have one smart baby!

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  6. In God all things all possible! Yes? YES! Pierce will do things when Pierce is good and ready to do them. Dr.s are not usually known for their people skills...funny since they chose a profession that has them around thousands of people. Go figure? No matter what Pierce ends up being able to do and not do, he is a gift from God and a MIRACLE and that alone is awesome! But in the end I believe Pierce will do great things. He has already accomplished so much! Praying for all of you!

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  7. I stumbled upon your blog months ago via mutual friends from Montreat College. Both my husband and I went to Montreat. We also have an incredible preemie! Wesley was born at 25 weeks. He had a grade 3 brain bleed among many other things. It has been a rollercoaster ride to say the least but he is such an incredible little boy and has taught us so much about our amazing heavenly father, what is really important in life, its ok to live at a slower pace, and much more. Wesley was officially diagnosed with CP about a year and a half ago. He is going to turn 3 in April and started walking this past August. I would love to talk with you sometime if you want. We have an amazing dr. in chapel hill that deals with his CP and he reminds us all the time that CP does not define Wesley at all. I know all the joys and pains that you are experiencing. As he got older and was expected to do more, it got so much harder for me. But then as progress came it has gotten easier. My email address is lucysnoble@yahoo.com I would love to chat anytime. I know you probably have a lot of support but there is nothing like someone in your own shoes and I feel we have a lot in common. Praying for sweet Pierce and so excited to hear the great things he will be doing! To God be the Glory.
    Lucy Noble

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  8. I am so glad to read this, I keep coming back to it. Your faith is admirable and an inspiration. Thank you for sharing your morning's devotion, something I needed to be reminded of, especially after having my trios 9 mo. check up. God is working through you and Pierce. How and when did you start signing with P?

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  9. HI Laindsay, happy 10 months! Since the time I read your first post about Pierce, it is so fast for these 10 months, just want to let you know Pierce and your family are always in my prayers, Pierce is such a fighter, and no one knows how capable he will be, even though the doctor! He is doing so well! I am sure he will be fine!

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  10. Thank you for including that devotion in your post... it was just what my weary heart needed to hear today. Thank you for sharing your journey and your faith... it encourages me in my own.

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