The Bright Side

Before her last procedure going to look into her airway are in the blogs “Family to Celebrate With” and “OCH” to go back and get caught up. But now her dilemma is the inflammation in her airway. And losing 2 lbs sense cominf off the ventilator, but we came up with a plan with the dietitian and have increased her volume by 10 mls she has been tolerating the increase which we started last Wednesday. The last visit that we had with her ENT specialist we were going over the plan of bringing her in for another couple of procedures to administer steroids. At this time the inflammation is so bad that was the reason that the speaking valve didn’t work because the tissue in her airway is so enlarged that it is actually blocking air from going into her upper airway (nose and mouth). So we went back to the ENT clinic to do another trial and altered her speaking valve where it could release a little bit of air so they drilled a small hole in it, and rechecked her pressures. AND IT WORKED! The pressure in her lungs is extremely lower than her last visit! So we started her out on Thursday and have been moving her up as tolerated. As of today we are up to 1 hour and 45 minutes, and she is doing great. She hasn’t figured out that she can make noise. Today we heard little grunts and whimpers when Marlee would take a toy from her so I feel like the more practice she gets on the speaking valve the more time she will have to figure out again how things work. This can also improve the inflammation in her airway because she will be using it as it is intended. It’s so sweet to see when I take the speaking valve off Nevaeh shakes her head “no” at me. I think she fills a lot better because she is wanting to get on her tummy, roll on the floor, and pull on things to stand up. She doesn’t seem like she wants to crawl but WALK instead. She pulls herself up on anything that she can scoot up to. She is for sure rocking it! We are all so proud of the progress she has made as well as her physical and occupational therapist, she has checked off so many goals in the past 5 months. We are still waiting for a new speech therapist for her, but she is still eating 3 times a day and drinking about 4 ounces in total. We also tried eating while she had the speaking valve on and she did awesome! She had 4 ounces of baby food in one sitting. She was being tube fed at the same time so she stopped when she got full.  From a cardiology stand point everything looks great with her heart! She has taken on iron as one of her new meds because her hemoglobin levels are low. Until they can come back up she will stay on the iron supplements. She is still going to monthly appointments as well and hasn’t gained any other meds other than the iron. We will see when her next procedure will be by the end of this week. Thank you all for the prayers, God has answered so many for our family, and we are nothing short of being blessed having all of you support us in so many ways!


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