We have been celebrating that Charlie has found the strength to bypass the trach and make loud and strong baby noises! We spent many weeks in the hospital in the months of November and December with line infections but the day we returned home from the hospital he began talking! I will never forget the last time I heard his voice and cry before he went in for his tracheostomy. It was a very hard day for this boy’s mama… But today we thank the Lord for growth, strength and progress! We recently made a change on his ventilator which was a wean towards taking him off the ventilator. In April there is one more wean to make and then we can begin taking off the ventilator for trial periods. At that time we will take a peek at his airway to see if it would be wise to take out the trach or not in the very near future. Many babies with Down syndrome have a more floppy airway and struggle with issues like sleep apnea etc.. We are hoping to find a strong and open airway that will allow the trach to come out sooner than later.
Charlie brings great joy around our house. There are always a pair of arms itching to hold Charlie. We are still working on regaining strength, skills, and progress with feeds since our last hospital stay. Baby steps…
success this week with speaking valve trials, progress with belly feeds, protection from infection, strength/perseverance/hope as our family loves and labors for Charlie.