Update (22 months)

I don't know where time goes between posts, but trust me... it's flying by! We've been so busy with therapies, doctors appointments and having fun that I realized it's been awhile since we updated our faithful followers.
Here's a quick update on Pierce and how you can continue to pray for us:

He's now 22 months (no words will be said as to how I feel about the upcoming birthday... sniff, sniff) and a whopping 23 lbs!

After a month of back and forths between surgeons, we've decided that the next step is to get a detailed and sedated MRI done asap so that we can see if Dr. Warf (in Boston) thinks he is a candidate for the ETV (and shunt removal!). If he is, we will make plans to travel to Boston for surgery. We are headed to Duke on Friday for a neuro appointment and should be able to have the MRI scheduled then. Of course we will keep you all posted as we will want many prayers as Pierce goes under anesthesia. Until then, would you pray as we need a local neuro team that can successfully work with Dr. Warf in Boston? We are hoping the surgeon at Duke will be the answer to that prayer.

In other news, Pierce continues to take small steps (literally) in therapy. While he's not close to walking independently, we are ordering him a gait trainer (a baby walker) to give him a chance at mobility. His PT really feels like this will help him tremendously as cognitively he understands and wants to move towards objects, but physically he can't quite coordinate those movements.  Gait trainers also help with proper bone growth and alignment. It probably will take several months to get it in, but we are excited at this opportunity for him to learn how to move! He has also been getting better at pushing with his arms to move into a hands/knees crawling position. He can sit unassisted for short bits of time, but still struggles with balance. We're hoping that we will see improvement in this area after his brain surgery.

What a gait trainer looks like
Pierce also continues to make great progress in Occupational Therapy. This week, Pierce got the chance to fingerpaint for the first time. He did so well following the rules of not eating the paint! He also didn't seem to mind the paint being on his hands (a huge step for him!). He even managed to make a handprint for me. If you had seen how he reacted to different textures a few months ago, you'd know this was a huge success for him!
We got our first snow of the winter on Saturday and Pierce LOVED it. He only played in it for a few minutes, but enjoyed squishing it between his fingers while saying "cold!"

In other news, we've been keeping busy with our local non-profit, Pierce's Project. We have been so humbled by the many folks who've taken time to sew/knit quilts, hats and blankets. A few weeks ago, we delivered 100 care packages! That is enough to ensure every micropreemie that comes through both Levine and Hemby NICUs will have one. We're speechless at the many who've donated their time/talents/money to help the local NICU families. Right now, there's a campaign going on for a family of a former Charlotte micropreemie and the proceeds are being directed to Pierce's Project. If you're interested, you can check out their story by going to their personal website. Be sure to watch this video clip from amazing micropreemie Maelyn! Isn't she so precious? Thank you to Maelyn's Dream Team for giving back through Pierce's Project!

Thank you all for continuing to pray for Pierce (and for us!). We will keep you updated as soon as we know more about the MRI.

1 comment:

  1. I stumbled upon your blog through Sarah Pope's FB posts and I have gone on to read Maelyn's story. I was wondering if you have any contact info for Teryl. My preemie story is very similar hers and I am curious for more information from her. If you could forward her my email if you have a way to contact her I would greatly appreciate it: yellowkaren06@yahoo.com Thanks!