Well November flew by! We stayed super busy and so much happened, I truly don’t know how we’re at the end. Below is as concise of an update as I could fit in. As always, thanks for your prayers and continued support!
Brain Plasticity Therapy
This is a biggie. I know a lot of you were closely following Reagan’s intense therapy sessions at the Plasticity Brain Centers here in Orlando. She did three, hour long therapy sessions for five days in a row to work on strengthening the weaker or more immature areas of her brain due to her crisis. Through a series of exercises, we were able to see amazing improvements. For instance, the light board that she worked on — the first day when she came in fresh, she averaged about five seconds in between each light she hit. By day three she improved almost 50% and by the last day, she improved 58% since day one.
Eye contact – her ability to maintain eye contact really improved. After a visit to her eye Dr., he said she still needs to wear her glasses, and she’s still far-sighted, but our hope is that with continued exercises at home and patching her right eye, that her left eye will gain strength. Either way, she looks so cute in those pink glasses!
Talking/Communicating – this is the area that has taken the longest to come back since her crisis. Since therapy, we have seen an increase in her wanting to try to talk more and we are able to more clearly understand some of the things she says. While at therapy, I asked if she wanted to do something together and she said, “together”. The other day while watching one of her favorite shows, Daniel Tiger, one of the characters said, “I like purple”. Since this is Reagan’s favorite color, she looked at me, pointed to herself and said, “I like purple, too”. In addition to that, one morning (after a 4 a.m. wake up call) Rob decided to take her to breakfast so I could sleep. He asked what she wanted and she said, “aahh-ffull” for Waffle. Funny that it sounds like awful, because that wake up time is definitely awful. She also said “Mr. Craig” when she recognized the Dad of one of our nannies. Santa has also been a favorite word lately. She says “Anta” and then gives herself a hug…because she wants to give Santa all the hugs. And Reagan has made it super clear that she wants Daddy to take her to see Santa, not Mommy. I’ve asked a bunch, definitely Daddy, not Mommy. At least she’s consistent, and she’s a total Daddy’s girl, which is so sweet.
Eating – We’ve seen huge improvements here. The volume of food she’s consuming is awesome. At the Waffle House she ate 42 grams of waffle. I know 99% of you reading this don’t weigh your kids food…if you do, you’re part of my GA-1 FB group, but that’s a lot of waffle for Waffle House for Reagan. It’s probably a third of a waffle. She’s eating full servings of potato pancakes at a local restaurant in town, she ate stuffing for Thanksgiving and this morning she ate a quinoa breakfast pattie WITH a waffle on the fork. I mean, that’s weird and awesome, I’m so proud of her.
Textures – Guys, the sand and salt water used to literally make Reagan vomit. If it got in her mouth, she would start retching and lose whatever she ate earlier in the day. She hated being in the sand. But now, I can’t get her down to the beach fast enough, and she digs and plays for hours. Four months ago we brought her to the beach and had to leave almost immediately, but now we can actually sit on the beach and enjoy watching our daughter play in the sand or in the ocean.
Sleep – I mentioned that recently she’s ready to party around 4 or 4:30 a.m. That’s new…so we’re working on stretching that to when the sun rises at the earliest. Until then, we’re drinking a lot of coffee and headed to Waffle House evidently.
Lastly, I spearheaded an amazing project with the Orlando Ballet, Nemours and Orlando Health. Below is the video in case you haven’t watched it.
After all of that, I really feel that this verse has been ringing true in my life recently. I’m so thankful that God is giving us beauty in place of the ashes, because for so long it felt like just ashes. I’m sure watching the improvements from the outside is amazing, and you can probably see more than we can on some days. But living in hard moments of loss every day can be tough. So for now, I will take all the beauty The Lord wants to give my family and I’ll pray for heaps more it it.
“To those who have sorrow in Zion I will give them a crown of beauty instead of ashes. I will give them the oil of joy instead of sorrow, and a spirit of praise instead of a spirit of no hope. Then they will be called oaks that are right with God, planted by the Lord, that He may be honored.” – Isaiah 61:3 (NLV)
November 29th, 2016 at 1:50 pm
I am so overjoyed to read this report! There’s so much to be excited about. Talking, eating, playing at the beach, eye contact–wow! Thank you for sharing your journey with us!
November 29th, 2016 at 3:38 pm
So awesome. God is good.
November 29th, 2016 at 7:16 pm
November 30th, 2016 at 1:41 am
I love reading about your family’s journey. God is so faithful, through good times and bad. I’m so happy she is making such amazing progress and pray she continues to soar!
November 30th, 2016 at 2:08 am
We celebrate with you as Reagan has made huge progress and is overcoming so many hard things. This little girl has won a place in our hearts! Thank you for sharing your journey! You and Rob are amazing parents! You are in our prayers and believe for more miracles in the journey!
November 30th, 2016 at 2:35 am
This was truly beautiful, Anne-Marie! You are one amazing Mom!