Wow! It has been a long time since I have updated the blog. I will apologize for being negligent; however, we have truly been enjoying life with Miss Emma and for that I will not apologize. :) There have been some events in her life since my last post that I will discuss and fill you in on the last few months in this blog post.
Emma had a couple of event in June and July that sent her to the hospital for a few days. While Scott and I attended a pharmacy conference in Arizona at the end of May into June, Emma contracted a respiratory illness. When we returned from that event Emma's respiratory virus that progressively worsened. The virus landed us in the cardiac ICU for several days and then on the cardiac floor for a few days with the need for increased respiratory support and meds. This trip turned out to be a blessing in disguise and I will explain that later.
Emma was also admitted to the intensive care unit in July for cardiac arrhythmia issues. Her heart was beating way too fast which is called atrial tachycardia. It would then go into heart block which would slow it down way too much. So we were in the hospital for a few days to administer a new medication to help her heart return to normal rhythm.
So back to that blessing in disguise. When Emma was impatient with her respiratory virus, she was put on a steroid to help with her lungs. While she was on that steroid, we noticed that her abdominal ascites was lessened, she had more energy, and her meds worked better. After discharging from the hospital, we conferenced with her cardiologist, pediatrician, and gastroenterologist. Well, they all agreed that none of this makes perfect sense, but we all agreed that it was worth a shot to try a longer-term steroid regimen to see if it would be beneficial. Whether it is pure coincidence or her steroid actually working, since she has been on the new medication, her belly has stayed small, we've lowered her diuretics, she has way more energy, she is wanting to try more things in physical therapy, and her heart failure number has improved. While we are still very new in this experiment, we are excited with the potential possibilities.
So back to that blessing in disguise. When Emma was impatient with her respiratory virus, she was put on a steroid to help with her lungs. While she was on that steroid, we noticed that her abdominal ascites was lessened, she had more energy, and her meds worked better. After discharging from the hospital, we conferenced with her cardiologist, pediatrician, and gastroenterologist. Well, they all agreed that none of this makes perfect sense, but we all agreed that it was worth a shot to try a longer-term steroid regimen to see if it would be beneficial. Whether it is pure coincidence or her steroid actually working, since she has been on the new medication, her belly has stayed small, we've lowered her diuretics, she has way more energy, she is wanting to try more things in physical therapy, and her heart failure number has improved. While we are still very new in this experiment, we are excited with the potential possibilities.
So what is our family been up to. We have truly been living, staying busy, and enjoying Emma's newfound energy. We continue to see the cardiologist weekly to monitor her blood work and maintain her PICC line. She has continued to see her physical therapist, occupational therapist, and speech therapist over the summer and makes improvements weekly with each of them.
We took a family vacation to Lake Texoma for our annual family reunion. It was extremely hot but Emma enjoyed the parts of being in the air-conditioned building LOL. She enjoyed being with her family and Scott and I enjoyed getting to do some things we love like fishing, waterskiing, and tubing.
Scott and I took a little celebratory trip with some friends in July. We took a cruise to Key West and the Bahamas. It was a very relaxing time with great friends… We ate a lot of food, laughed a lot, soaked up some sun, rode horses, kayaked, and Segwayed.
We are now back into the swing of things. Emma started school this week which will add to her normal routine of all of her therapy visits. She is actively getting on her hands and knees and trying to crawl, standing for short periods of time unassisted, spelling words, simple addition and subtraction, reading comprehension, and so much more. She is loving time with her friends, family, nurses, and of course her mommy and daddy.
Thank you again for being patient with us as we strive to live our normal and enjoy every moment with our sassy girl.
God is Good! All the Time! God is Good!
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| Memorial Day muddin' |
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| All smiles at her dr appt |
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| Respiratory illness=no fun |
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| 4th of July with Nana Jana |
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Family fun.     |
