We don’t have too much new to update everyone with this morning, which I guess is good news. Emma had a better day yesterday. She wanted to get up and play and was in a better mood. We were all happy to see a little bit of our normal Emma.
The doctors are only in briefly on the weekends, but all of them were pleased with Emma’s progress. They all still heard some crackling in her lungs, but felt it was better. They were all also happy to see her up and playing. Pulmonology seemed happy with the progress in her lungs from doing Lasiks and adding the steroid. The pulmonologist recommended adding CPT therapy for Emma to help loosen up the junk in her lungs. So Emma now gets her lung area massaged four times a day with a vibrating machine. She tolerates it better than I envisioned thankfully. She continues with her other breathing treatments, antibiotics and steroids in the hope her lungs will continue to improve. The doctor also recommended getting her up and walking. As of right now she isn’t cleared to leave her room, which makes walking around a bit difficult so they are working on getting her cleared to be in the hallways if she wears a mask.
The best news yesterday was that Emma was able to come off of oxygen a few times and maintain her oxygen levels on her own. She was off for almost on hour once yesterday afternoon. This is a step in the right direction as she has to be able to breath on her own without the oxygen and maintain her oxygen levels before she can go home.
While Halloween didn’t go quite as planned, Emma was happy to dress up as Doc McStuffins in her room and celebrate Halloween with her parents and grandparents. Aiden had fun dressing up as Iron Man and trick-or-treating with Haley. It wasn’t how we wanted it to go, but it all worked out. It was yet another reminder not to take the little things in life for granted with your kids.
A special thank you to all of the visitors we have had and to those of you who have sent special Halloween gifts for Emma. She has loved getting them! Thank you again for all of the continued prayers and support! We love you all!!