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.
"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