We have had a busy summer getting settled in Atlanta, but we wanted to post an (overdue) update about Miss Bexley. Since our last post, we have gotten her set up with therapy services again.
Bex now receives therapy in a clinic setting vs. the in-home county services provided in Charlotte. There are, of course, differences/pros/cons, but Bex adapted quickly to the change (so I guess it was more of an adjustment for us than her, ha). She really seems to enjoy her therapists and all the fun toys/equipment that they have in the clinic setting. She continues to make steady progress in all areas, so here is a bit of an update on what she has been up to:
Bex just started OT in Atlanta. In OT, she works on activities to improve hand strength, hand-eye coordination, and bilateral coordination. Bex has always had the tendency to favor her left hand from a very early age, so OT is helping her to use both hands more instead of depending on her left to do it all. She absolutely loves OT. We do a lot of coloring activities, puzzles, working with beads, etc. Her fine motor delays are mild compared to other areas, so she really shines in this area and feels successful. It is fun to watch her grow and pick up on new tasks relatively easily.
As of July, Bex has officially been participating in PT for 2 years. Two years ago, we started PT working on basic skills such as head control and grabbing for toys. She has worked so hard and come such a long way in the last two years. In June, we had her fitted for Ankle-Foot Orthotics (AFOs). They are larger than her previous orthotics and provide her with more support. She feels much more stable now working on standing activities. We have started working on cruising activities (side-stepping along a couch) as well as using her legs to push up into standing (instead of pulling herself up with her arms). Recently, she has even starting using a gait trainer (click here to see an example of a gait trainer) a little bit in therapy to work on practicing taking steps and with a lot of trunk support from us can practice taking steps at home. While Bex has been able to sit up independently for awhile, she could not get herself into that position without assistance. Recently, she finally accomplished the task of sitting up by herself independently, which is something we have been working on for a long time and such a huge accomplishment for her! We still keep in contact with her PT from Charlotte to update her on Bex’s progress. As she recently said to us, Bex should be very proud of herself because all of these activities are hard work for her. See some videos of Bex showing off below - as you can tell from our voices, we are proud of her, too! :)
Testing done by both the county and private clinic revealed that Bex has no receptive language delays. Go Bex!! We count our blessings for that every single day. She is a little sponge soaking up everything you tell her and her memory is better than ours most days. If you tell her you are going to something, she holds you to it. Speech therapy sessions focus on expressive language skills. In all honesty, this is probably the hardest therapy to watch Bex in. She knows exactly what is being asked of her, but it is hard to coordinate her muscles to make the sounds she is being asked to make. At times, you can see her shut down and get frustrated with herself. Despite these challenges, she continues to make progress and is slowly, but surely expanding her vocabulary. She recently just learned her first 3-word phrase and it brings a smile to our faces every time we hear her use it.
Bex’s new neurologist requested another EEG and MRI in June. We, of course, HATE these appointments/procedures, but we also understand they’re necessary to give him a better idea of any changes from the previous EEG and MRI. These results were all given to us in a brief phone call that left us with more questions than answers. He has requested a follow-up 24-hour EEG later this month that will hopefully clarify things. We also have a follow-up appointment at the end of the month to discuss everything in more detail, but it sounds like he is getting close to make another diagnosis. More to come on all that in a later blog post.
Until then, we remind Bex to live by the motto on her shirt in the picture below “I can & I will.” And we know, she will.