It has been about 6 months since I shared an update on our Addie Girl, and it felt right to share another.

We have a walker!

Addie took her first solo steps at about 2 years and 2 months old. We were elated to see our girl walking independently. One evening, she just up and decided to walk–not just one time, and not just a couple of steps. For an entire evening, she walked 10-20 steps at a time at various places throughout our home. We really thought, this is it!

The next day however, Addie took no steps at all, not even an attempt. And the next day was the same, and the next day. We had a physical therapy session that following Monday, and were told she may have just worn herself out and to give her a few more days. However, Adelaide kept us waiting…and waiting.

A whole month went by with nothing. Not a single step. We were confused. Was it just a fluke? Did we do something wrong? Was something about her walking experience negative that we hadn’t picked up on? It was back to knee-walking 24/7. 

And then, as suddenly as she started and subsequently stopped, she started right back up again. We had a friend over and were playing in the yard when Addie decided to remind everyone that she can stand up! And then she decided to remind us all that she can take steps. Before we knew it, she was taking laps around our yard!

And she didn’t slow down. She has now been walking solidly and consistently for about a month now!

As Addie has grown, she has shown us that she is a fiercely independent child. She prefers to do things on her own and we have had to practice getting her to ask for help. (Now that she is talking, this is getting easier.) She also seems to have a tendency to want to do things right. My only guess is that she was waiting until she felt 100% comfortable attempting to walk before taking those first steps–and perhaps after that first night, she felt she needed a bit more time. And so she waited, and we waited right along with her until she was ready.

In my last update, I mentioned that she was getting testing done ordered by her neurologist. Frustratingly, half of her tests were unable to be completed due to the lab did not store her blood at the proper temperature. The results we did receive (thyroid, liver, kidney, and metabolic panel) all came back normal. Because the blood draw was a fairly traumatic experience for her (one that I am relieved Tim took the lead on) and she has since made phenomenal progress, we opted not to re-run any tests. Therefore we still do not have any answers as to the cause of her hypotonia. However Tim and I are comfortable moving forward knowing that she is accomplishing huge milestones that at one point seemed totally out of reach. She does have a follow-up appointment with her neuro in June that we are feeling optimistic about.

Just yesterday, her physical therapist agreed that we can switch to monthly check-ins and that we could drop OT altogether. This is a HUGE win for us, given that just a couple of months ago we were doing PT sessions twice per week, combined with OT once or twice a month. 

The most rewarding aspect of all of this has been seeing Addie comfortably interacting and keeping up with her peers. Throughout her life, she has always been just a few months behind children her own age, and sometimes even those a bit younger than her. She has always loved seeing other kids and lights up whenever she is around them, however she always seemed cautious and prone to observing rather than participating. Now, we have seen her engaging with others and making friends, all while running and playing. She is blossoming. Additionally, her language skills have exploded over the last couple of weeks, which her PT attributes to her not having to direct so much energy on simply getting from point A to point B, and now being able to divert that to developing other skills.

I am so grateful for the positive update I am able to share today. However, I need to acknowledge that this journey has been physically, mentally, and emotionally draining on our whole family. I hope to one day be able to write through our experiences over the past 10 months–our struggles, sorrows, fears, and joys among the challenges. However, amid my relief, I am still processing all of it and am not quite ready to unpack it. 

What I will say to parents of children with mobility and motor delays–we have been in the trenches with you. It is a challenge, and every emotion you are experiencing is valid. If you need someone to talk to, I am here. There are wonderful resources and support groups that have made a world of difference that I would be happy to share and for which I am forever grateful.

That’s all for now. Thank you all for following along on our journey and thank you to every person who has asked about Addie or celebrated her wins, big and small. You are our village.