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  • Writer's pictureJenny

Dahlia Update - we're up and walking!

Updated: Oct 8, 2019

I thought I'd update all of you on how Dahlia is doing as of late...

In August, she was asked to depart from her home daycare, as she was getting too heavy and difficult to handle by our childcare provider. We understood the reasoning, but we were beyond stressed. No daycare centers would take her because it was against their licensing policy to allow a non-walking toddler into their center. We didn't think another home daycare was a good fit for her, and couldn't find an available one anyway. We finally decided on an in-home nanny, and it's turned out to be the biggest blessing. Our nanny takes her on many walks, goes outside, plays with her a ton, and can even take her to some therapy appointments. Dahlia gets lots of one-on-one care, healthy meal options, and nice uninterrupted naps, something she really needs in order to make it through all her therapies.

Speaking of therapy, she has in-home sessions 4 days a week, and in-center sessions 3 days a week. She is so busy, but is a trooper through and through. We also have her in aquatic PT over at CHOC. We are considering adding hippotherapy soon.

The greatest news is that about a week or two into being home with our Nanny, Dahlia starting walking (Thanks Nini)! She has taken off like a rocket in the last month, and her walking improves every day. She can pull up to stand, then will walk across the room like it's nothing. We were astounded the first time we witnessed it. She cannot yet stand up on her own, from the floor, and we are hoping that can happen because then she really is without limits with being on the move. She's suddenly because extremely independent, refusing to hold our hand when she's walking. We know this is something that wasn't guaranteed with BPAN; not all BPANNERS walk, and many that do, don't walk by two. We are beyond grateful and happy to see this milestone get hit, and we don't take it for granted even for a minute. We know this is a skill she will lose at some point in her life, and just we hope that point is far, far away, and we choose to not dwell on that.

Dahlia still has no words, but many many sounds. "Yeeeeah" "Mama" "Dada" "Nana" "Baba". She points and whines now for what she wants, while waving her little hand. Waving her hand is kind of her "yes" sign. She also is the "more" sign master.

She signs for "itsy bitsy spider", "wheels on the bus" and "row row row your boat". She LOVES Mickey and Minnie Mouse, and always cuddles her plush toys and baby dolls.

She also now gives kisses anytime, and it's the greatest thing.

She loves to cuddle, and makes "awwww" sounds when we hug.

She eats fairly okay with a spoon and fork, she loves her yogurt and still gets messy.

She loves the bath, still is crazy about books, and she knows what she's doing when she's pulling our hair or swatting at us. She gets a loud "no", then does it again and again wanting more of a reaction. We've learned to just ignore it and redirect.

She LOVES her brother like crazy, that hasn't changed, but the greatest thing is they now "rough house" (it's terrifying but hear me out), where he lies on top of her while she's on her stomach. She goes NUTS for it, laughing and laughing, loving the heavy pressure the weight of him puts on her. I think it's because it fulfills her need for vestibular input. When he gets off, she springs back up laughing and signing for "more" and he understands her and they go at it again. She loves to lie on top of him too, and give him hugs. Seeing them really interact as siblings, playing and communicating, has more than melted my heart; it's given me a new level of hope and realization that I'll get more normalcy than I thought I would in this journey.

Dahlia is huge, 40 lbs, and 36" tall, and we hope she'll thin out a bit with all the walking, for no other reason than that she is hard to pick up and carry. We are also thinking about what to do for her bed. She's still in a crib, and I imagine that mattress is maxing out on her weight. If anyone has any tips on next steps please comment or message me!

We received the NBIA seasonal newsletter, where we got recognition for the money we've raised in such a short time since the diagnosis. Thanks to all of you, we are getting somewhere with finding a cure!

Our Dahlia Seed fundraiser was a success, raising about $2000, and all seeds went out last week. If you donated, I hope you get your seeds soon and can start planting!

We have something big planned for early next year, and hope you continue to follow along.

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