Nicholas update

Well usually when I start off with a "Nicholas Update" it tends to be bad news. Not this time. Since we started this blog to keep everyone updated on Nicholas I figured it was time to do that.

Nicholas is finally doing well. No illnesses as of right now and he has finally healed from his tonsillectomy (which by the way took a full 6-8 weeks!) We can't say that we see significant improvement. He still does not sleep through the night. He will maybe go 3-4 hours at a time and then stay up for 2-3 hours. This leaves me with permanent dark circles, bags under the eyes and lots of wrinkles!!!! Plus, I have noticed gray hair recently! Totally not cool! Anyway, he does not cough as much which is wonderful. He would constantly have to cough up secretions. And he is not as noisy as he used to be. Those are all pluses but not in the area of sleep.

The ENT was pleased with his progress and has vowed to leave him alone for a while. He did get Nicholas hooked up with a dentist (good luck with that!) and is trying to get Nicholas involved with a special clinic at Brenner. Okay, so my first reaction was "Great! Let's add more doctors to our long list and add more visits to Brenner." His reply was "Guys, this is Nicholas' second home-get used to it." Brenner is a wonderful second home to have and we have been so, so blessed to have a team of doctors and nurses that love our son and want the absolute best for him. I would rather refrain from calling Brenner our second home though. Let's not go there!

So about this clinic...there is a special clinic at Brenner for children with neurological injury such as Nicholas. They are a team of physicians and therapists that help kids learn to eat and eat correctly. When Nicholas first came home three years ago, he had started with OT (occupational therapy) to specifically help him learn eat. He has a feeding tube in his belly where he receives all food and meds. Nicholas has lost all ability to eat and suck. He did really well and was close to a swallow study to see if he had reached the point where he could eat. Then the teething started. In his ability to cope with the pain of teething, he would no longer allow anyone near or in his mouth. That ended the swallow study.

Around a year ago, we started OT back up. He seemed to do well but had to start all over. Everything he learned was forgotten. Then one day his now previous OT said, "I do not feel like he will ever eat by mouth." At first I was so disappointed and wanted to cry but then I stopped. I truly believe that my son will eat something by mouth. He may never get rid of his feeding tube but he will have something by mouth. I refuse to give up on this. I look at my son and see and feel his determination. Aren't all things possible through Jesus Christ? Nicholas is living proof of that. Anyway, this left us stuck. We no longer had any support to help Nicholas further his ability to eat. The therapist had written him off. I was bummed. How can people just give up on these little kids and who can help when no one will? It broke my heart but I refused to let it go.

So who do I go to but our Brenner staff. First on the list was his ENT. After he had checked Nicholas out I asked him about Nicholas eating and told him the story. He had thought all along that Nicholas was receiving food by mouth!!! Yes!! This was encouraging. He was not pleased that they had given up on Nicholas and said he would get Nicholas enrolled in this clinic at Brenner-our second home :) Here they would work with Nicholas and help him develop the ability to eat by mouth. There are no guarantees but at least they have not given up hope with our son and will do everything they can to help him. With tears in my eyes I told his ENT "how can they just give up on him? Give him the chance to learn. How can anyone give up on a child without helping them to learn?" He said, "that is why we are here. We want to help Nicholas reach his fullest potential in the safest way possible." Amen!!

I am so excited. It takes around five months to get in this program. Nicholas will have more therapy, more visits to Brenner, more doctors but all to help him "reach his fullest potential." I have said it so many times but we have been so blessed to have our Brenner family that have done so much to help our son. All because they have the love and heart for these children and want to do everything they can to help them. The Lord has blessed us beyond measure!