Laryngomalacia

When Carlei was born we noticed that she was a noisy breather and got worse with excitement and such. When she was 6 months old we went to a local ENT (ears, nose and throat) Dr. He diagnosied her with laryngomalacia. "Laryngomalacia is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it." (http://www.chop.edu/service/airway-disorders/conditions-we-treat/laryngomalacia.html)

(http://www.webmd.com/a-to-z-guides/normal-vocal-cords)

  Laryngomalacia. The epiglottis is tightly curled and omega-shaped, with short, tethered aryepiglottic (AE) folds. There is redundant supraglottic mucosa overlying the arytenoid and accessory cartilages. (http://www.sciencedirect.com/science/article/pii/S1043181009000852)

We would take her in every 3 months for a check up and the doctor said that it was a mild-to-moderate case. At 12 months, he said that he is not comfortable saying that Carlei is going to be fine so he referred us down to Primary Childrens Hospital in Sakt Lake City. There we meet with a pediatric ENT. We described her symptoms and he said that it will probably be fine but he wanted to make sure, so Carlei got her 4th scope; down the nose to the throat. Poor girl. The doctor told us that she has a severe case of layngomalacia. He said that he is very surprised that her symptoms are not worse than they are. He kept asking us if she ever stopped breathing at night and of course, like most parents, we told him that she sleeps in seperate room and that we don't stay awake watching her every night. He chuckled. He then reassures us that she can still out grow this condition but it is going to take her years to do this. His biggest concern is that her oxygen levels drop at night so he wants us to do an overnight oximetery test. A local company will bring a small device to our house that has a finger probe on it that will record her oxygen levels at night. If she can keep her levels up at night then he is comfortable saying we will just watch it. However, if they drop at night then we will have some decisions to make on her behalf, surgery being the best option.

Many people have asked me if I am worried or not. All I can tell them is that we have had a miracle in our lives the past 14 months that we did not know about. Since the doctor was so surprised that Carlei is doing as well as she is. He said that she should be doing a lot worse. The miracle is the fact that Carlei is doing so well. For that, we are so grateful. We have definitely since the hand of the Lord in our lives and in Carlei's. We know that the Lord will be with us and will help us make the best decision for our family. We have felt so much comfort through these last few weeks that I am feeling incredibly blessed and grateful for all that I have. One of my friends asked me how I am holding up. All I could tell her is that I am so happy with my life, even with these trials. I know that I am suppose to learn patience and rely on the Lord and that what ever happens is the Lord's will. I am at peace. There is nothing that I can do in either situation except stay strong for my family.

                                                                  Carlei at 3 months!