One Year Later

What a difference a year makes! In August of last year Nicholas spent 15 days at Doernbecher Children's Hospital. He was admitted on August 11th and stayed until August 25th. He had been losing weight and was only 17 pounds when he went in because he refused to eat much of anything by mouth anymore. The night before his hospital stay, I was bawling as I gave him a bath because he had become so small and frail and he didn't have an appointment to see a feeding clinic specialist until the end of September. I felt absolutely helpless which is the worst feeling for a mother. The next morning, I took him to his pediatrician who promised us that before we left his clinic, he would get Nicholas into a hospital to get him the attention that he desperately needed. During that fifteen day stay at Doernbecher he had his g-tube surgery and was finally given a bi-pap for sleeping.

Just looking at his skinny little self in these photos makes my heart break. He has such a strong, fighting spirit in him and you can see even though he was emaciated and not doing well respiratory wise, he still managed to smile and keep his spirits up.Now one year later, Nicholas has gained approximately twelve pounds and is much healthier because of his g-tube and sufficient nutrition. He now has fat on his body where he used to be just skin and bones and it is so nice to see his--dare I say--"chubby" thighs and biceps. He also gets good quality sleep because of the support of his bi-pap when he is sleeping which helps him to have more energy during the day.

I cannot even begin to explain how life changing that hospital stay was for Nicholas and his health. The doctors and nurses taught us so much about his neuromuscular disease and how to use his new ventilator and feeding tube. I am so grateful that he has such an amazing pediatrician who is willing to be an advocate for Nicholas and his many health care needs. Most of all, I am so grateful that we still have our sweet boy here with us to give us so much joy and love each and every day. Nicholas is a blessing straight from Heaven and being his mother is one of the best gifts I have ever been given.

Keep on fighting, Nicholas! WE LOVE YOU, BUDDY!