It has been a long time since our last post, so we wanted to update everyone on how Nick is doing!
Over all, things are going well with Nicky and we are happy with his progress. His first birthday party was great, and it is hard to believe he is already one year old! He has been very busy lately, and we are very proud of him!
We recently met with a pediatric cardiologist and ophthalmologist for two critical examinations. The first is his eye exam. It went well for the most part and we will see the doctor again in six months. The second important annual exam is the cardiologist. This is because his condition can cause problems with his heart. Well, we were beyond thrilled to find that his heart is perfectly normal. After all of his challenges, our little man deserves to have something that works perfect. Did I mention how proud we are of him?
We were also able to go on vacation last month in Orlando. We were with Grandpa and Grandma Ruhana, Uncle Jimmy, Aunt Lori, and Cousin Colson. We are sure glad that we did because Nicky did great! He was calm on the plane, and it turns out he is very responsive to fresh air and warm weather. There was a noticeable improvement in his energy level and his physical therapy for the whole week was great. One night, he held his head up for over 30 minutes which is a major accomplishment for him! We were also happy to find that the swimming pool relaxed him. He slept well and we think the swimming pool helped. Although he had a good week, he gave us a scare on the last day.
Nick woke up around 3:30 on Friday and was coughing a lot and uncomfortable. After speaking with his nurse, we learned that Nicky's throat is getting irritated by the feeding tube, which leads to his resistance to swallow his saliva. This causes the coughing. So, we have decided it is time to remove the feeding tube from Nicky's nose for a more comfortable solution. Our support system suggests that a tube be surgically inserted into Nicky's stomach, which is what will be used for his food. We met with the Doctor this week for a consultation, and he feels this is our best and most comfortable solution for Nick at this time. We are planning the surgery for next month. This does not mean we are giving up hope that Nick will eat again one day, and in fact, he eat a good portion of his rice cereal with his Grandma this week. It is just the best solution to protect his air way right now.
The procedure will not be easy for Nicky and the poor little guy will be in the hospital for three nights. The surgery will also postpone Nicky's next experimental treatment until July, but we feel he is stable and have made the decision that this procedure must take precedence over anything else right now.
I've said before that we can never take for granted that Nicky is breathing. His breathing is strong and he is consistently at 100% oxygen. The doctor thinks that removing the feeding tube will help his breathing and eating as well.
The seizures are still under control, but Nick has something we do not liked called "involuntary muscle movements". These are movements are where Nicky will randomly flinch. They really set him back, but we always know that we must be grateful that he is not having the same seizure he used to have last year that would last for 10 minutes. Thank you God and please keep protecting him.
Nick's physical therapy has REALLY been great and as I mentioned earlier he will still eat from a spoon and swallow once in a while. His Grandma Ruhana is best at getting him to eat consistently and I hope she knows how much we appreciate all of the effort!
He has certainly gained a lot of weight. Nick is over 20 pounds now! We have to watch his weight and diet very closely, and Nurse Kris is happy with his progress right now!
It is a miracle in its self that we celebrated Nicky's first birthday and we thank God every day. Time and time again, our family and friends have told us that love and prayer would help Nicky and now we know that it is. Thanks to everyone!
