Hi Everyone! We have some big news we want to share with you! As most of you may know, Liam was recently found to have dysphagia, or difficulty swallowing. Since April of this year, we have been treating Liam's dysphagia with traditional methods including thickened liquids which helps prevent aspiration of liquid into the lungs, as well as weekly sessions in feeding therapy with an occupational therapist. We are absolutely astounded by the progress Liam has made in the last few months....there are no other words to explain how excited we are. The dysphagia was causing aspiration. What this means is that when Liam was drinking fluids they were not going down his esophagus as they were supposed to. We have learned that the aspiration was causing some issues. For example, Liam had chronic ear infections which caused an inability to hear properly, leading to a mild speech delay, which then lead to a mild communication delay. On top of this, Liam's first year of life was riddled with several high fevers that required constant antibiotics, asthma with frequent wheezing which required daily nebulizers to help him breathe, and other several eye/sinus infections that we could never quite keep under control. Since we have started treatment, we have not had one ear infection! I did recently take Liam to the doctors office for a cold, and the doctor said his ears looked great and his lungs sounded clear! This was the best feeling ever! Liam's speech delay is completely gone, and we eagerly anticipate him being discharged from speech therapy in the very near future. Through this whole journey, the most amazing thing that has happened so far is the day I asked Liam, "who are you?" and he said, "Liam." The verbal and cognitive skills required to meet this milestone are so important, and of course I teared up....I am so proud of him! Liam's frequent fevers are mostly gone, as is his congestion. Liam's speech therapist often points out that "he is like a completely different kid" since we started treatment! Now the important thing is that although Liam has come such a long way and is doing awesome, a follow up swallow study is still showing abnormalities with his ability to swallow. The risk of aspirating and possible resulting illnesses such as pneumonia, are still high and need to be monitored. Until recently, there were no effective methods for treating dysphagia. However, in August we met with our developmental doctor, Dr. Kuchinski, and she explained there is now a therapy called VitalStim that can actually help improve Liam's ability to swallow.
VitalStim is a therapy which works through the use of PAINLESS Neuromuscular Electrical Stimulation (NMES). Electrical stimulation is used to aid muscle strengthening to "rehabilitate" the swallow.We are hoping as an added benefit that Liam will have an improved sensory awareness of the food he is eating, since this seems to be one of the areas he is weak in. Basically, what happens is a therapist will attach electrodes to Liam's neck which will provide stimulation to the target muscles, and this will occur during a meal. We have completed an evaluation with Good Shepard and Liam has qualified for 3 sessions per week. I believe we will start in the next week or two. With all of this being said, our first week will be about seeing what Liam can tolerate. I have been assured that this therapy is absolutely painless, although there may be some funny sensations. One of the reasons I really think Liam will do well with this is that one of the first suggestions our OT gave us was to get Liam an electric toothbrush for additional stimulation, which he absolutely loves!
If you would like more information on this therapy I am including the link here: http://www.goodshepherdrehab.org/services/pediatric-rehabilitation-developmental-pediatrics-allentown/outpatient-rehabilitation-and-4
Our little warrior has once again struggled through adversity and beat it! We are so amazed by him each and every day, and even more so now that he is developing faster than we can even handle. He is such a joy to be around for each and every one of us, I just couldn't imagine our world without him. He has improved not only my life, but me as a person. Whenever I am having a bad day, I just imagine his cute little giggle and he lights up my day!
For now, the Nagy family could not be happier with how everything is going! Of course, we would appreciate some positive thoughts, vibes, and prayers that this therapy is effective and we no longer need to mix the lovely thick- it into Liam's fluids.... or worry about him drinking the bath water! Of course we know that whatever the outcome, we are just so lucky and blessed with our miracle and we have such an amazing bright future ahead.
Love to all, I will keep you updated with our progress!
