I’m almost afraid to say it but I think I can finally see the light at the end of the tunnel. McKenna has been steadily improving over the last few days and today is the first day that I feel like I can actually watch her play instead of hovering over her in fear of her falling at any moment.
Yesterday she finished a 48 hour brain wave study. I have never been so relieved to have her wake up early, I could not wait to get all of the electrodes off of her head and disconnect her from her monitor. Today we had a very long visit with the pediatrician while she went over all of the testing that has been done in and out of the hospital. We will be starting physical therapy and are also going to see a rheumatologist while waiting for the results of her brain study. The pediatrician also called me after we left her office with a possible lead on what McKenna may have. It is called Sydenham’s Chorea and the characteristics of the disorder sound very similar to what she is experiencing.
I am doing better with things now that we have a plan. We were discharged from the hospital with no diagnosis or plan for rehabilitation so it has been a tough week. The nurse at our doctor’s office actually offered to buy me a bottle of wine after I cracked when she asked me how things were going. Being back in the hospital with her after all she went through as an infant was so difficult. As much as we would like a diagnosis, watching her go through all of these tests is heartbreaking. I feel terrible that she is going through all of this and hate watching McKenna struggle. We just hope that she will be able to return to the same little wild girl we had a few weeks ago and she definitely seems like she is on her way.
Many, many thanks to everyone for your kind words and to all of our friends and family who have helped so much over the past few weeks. We could not get through this without you!
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