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!