Friday, September 21, 2018

So much testing

Today’s appointments consisted of cardiology, physical therapy, and AFOs. For cardiology we go in every 3 months. Since Hailey has had her pacemaker she has gone into complete heart block. That means her pacemaker is pacing 100% of the time. Usually a pacemaker just kicks in when you need it, if your heart missed a beat. Hailey’s brain doesn’t connect well enough “electronically” to her heart. We go so often just to make sure her heart is strong enough to handle the constant pacing. There was some unexpected news but nothing that we weren’t able to catch and interviene in. There were a few adjustments made and as always we continue to monitor. The Cardiologist feels like we are no longer a step behind but we can not predict how her heart will respond, so constant monitoring is crucial! It’s extremely scary but we trust our Cardiologist.
We haven’t been as diligent with physical therapy since we are constantly out of town. Luckily we have made friends with our physical therapists who are happy to see Hailey “off the clock” or on their lunch break!
Lastly we have been working on getting new AFOs. Those are the braces she wears in her legs to help her walk independently. We had the molds done and sent off and we went in for adjustments yesterday. They will be changed where needed and we will pick them up when they are complete. In the mean time we will find new (and unfortunately expensive) shoes to go with the new orthotics. We usually go into a New Balance store and find Hailey’s new size and then order them from Zappos.com wait until you see the pattern on the AFOs. It’s totally Hailey!
After such a long stressful day we took Hailey to the St. George Children’s Museum to unwind before the long drive home. Post on that to come soon!
That’s the update for now! Testing continues and doctor appointments start up again next week. For now we have the weekend off and I will be catching up on any and all open orders in the Etsy shop! #leukodystrophy#ataxia #leukodystrophyawarenessmonth #pacemaker #disneykid#momblogger