Avleigh's Journey

We fill Avleigh’s Journey page with beautiful pictures and videos of her good moments and best accomplishments. We are very proud of all those moments as much as she is of herself. What isn’t always explained is these accomplishments aren’t always continual. I spent some time recently looking though old photos and videos. Not sure if that was a good thing or not, but it did allow me to see how much something like growth has an effect on her abilities. 

My first thoughts after watching the videos were “what are we doing wrong”. My eyes filled with tears thinking back how she was able to sit on a bike if it had handles she could hold on to, she was able to hold her bottle if we put her laying, she was able to shake a toy and at one point she was able to roll like a champ. The fear that we weren’t doing enough with her started to set in. 

After speaking with her therapist I was reminded on how her little body reacts when there’s growth. We both agree it’s not set backs but improvements on her muscles from treatment. When we started intervention her muscles were so tight that’s she was involuntaringly holding the bottle from her not being able to let it go. You see, on top of the lack of ability to coordinate motions from her disorder, her muscle tone changes on a regular basis. In addition,  as she grows her muscle tone is changing again making her relearn all those movements she’s already conquered. Some she is able to relearn and some are in a much slower process. 

Just to give examples of how much this could change, most have seen her videos of her standing beautifully by her activity table. This huge accomplishment only lasted about a week before her muscle tone again changed. She’s still able to stand but can only weight bare for a few seconds, minute at most. Same thing with her rolling. The video I have was of her continually rolling all over the floor. I can remember that she would roll so much that she would roll up to furniture from in the middle of a room. Again, this only lasted about a week. Now we’re lucky if she rolls a few times a month. 

The good from all this is that the medicines and therapy are working to relieve the high muscle tone and spasms. Instead of her clinching down on objects and holding them involuntarily, she is able to open her hand to release the object. She has much better head control. Her communication skills are improving. She’s getting much better at showing us what she wants through sounds. Moe for more, mommm for momma, ou for out and ga for go. She’s using her improved hand motions to select items on her touch communication device. And most of all her body language. That tells us a lot on what she wants or needs. 

Our main goals for Avleigh is quality of life. This leads us to our top two goals: physical abilities and communication. We are continuing to work on her upper body abilities to better allow her to be able to play with toys without assistance, use her communication device more successfully and maybe one day the ability to assist in dressing. Our communication goal is for her to be able to tell us when she’s hurting or what she needs. The rest is just lagniappe. It’s not important to us for her to be able to walk or speak full sentences. She has proven to be very intelligent and we will continue to teach her, but again it’s not top priority. Top priority is what gives her the best quality of life. 

All these things will be battles for Avleigh through her life. We have to remember that what appears to be set backs are improvements in other areas.