June 11, 2012
Good Evening!
I hope this email finds you all well. I wanted to give you a quick update on Nathan's progress. We are still here at children's. It has now been 13 days. We have been on the neurosurgery floor and have been receiving excellent care. Nathan has progressed remarkable well. All of the doctors and surgeons are completely amazed by how quickly he has bounced back. If it were not for Nathan's feeding troubles we would have been discharged today. He still has a lot of neck pain, but he is only taking Tylenol. If this were one of us we would still be asking for IV pain meds. They always say kids are resilient, but it is amazing to watch the progress from day to day.
Unfortunately we received a piece of bad news today. We did a swallow study and they determined that Nathan is aspirating all liquids and baby foods. Which means that it is not safe for Nathan to eat anything by mouth because the food can go into his lungs. Nathan was aspirating thin liquids before the surgery, but we were hoping this would improve after they removed so much of the tumor. There is still reminisce of the tumor in the part of the medulla that coordinates swallowing. Our hope is that over time the swelling around the tumor will go down and Nathan will be able to coordinate his swallow so he can safely eat by mouth. This may happen in three months, three years, or maybe never. We just don't know right now.
Nathan will undergo another surgery tomorrow to insert a gastric tube into his stomach. Nathan will receive all nutrition through the tube for now. The good news is that he can swim with this tube and it will be more comfortable for him. Unfortunately, Nathan is 8 months old and this is the time that babies learn how to explore different foods and textures. Nathan will have a long road of therapy ahead of him, but as we all know this little guy is TOUGH!!!
We knew there would be bumps and sets backs along the way. We pray they don't come often, but we have to be thankful for the moments we have. At this moment I am able to watch my little boy sleep soundly in his crib. A week ago today we were not sure if that was going to happen.
So once again, I ask for your prayers for Nathan tomorrow. We pray the surgery goes well and Nathan adjusts quickly to his new way of eating. We have seen our prayers being answered one by one. Nathan's recovery is nothing short of a miracle. We know God will continue to take care of our little guy, but it never hurts to remind him.
Mike and I truly love hearing from all of you. It helps to make the days in the waiting rooms go by quickly. The greatest gift you can give us is your thoughts and prayers. They are helping all of us get through this difficult time.
Much love,
Beth and Mike
I should be the one staying strong and offering words of encouragement, and instead, I am choked-up and crying over your incredible strength, faith, and love for others! You are truly an inspiration. Yes, I believe Nathan is the strong one....in his fight....he has made us all better parents, sons and daughters, and friends. In the miracle of his diagnosis and surgery, he has made us firm believers and we won't ever take our faith for granted. He has taught us that prayer really does work. And he has taught us to never, never stop believing in him and the power of prayer being a cure.
ReplyDeleteWhen you speak of Nathan's "new normal", I am in awe of your appreciation to accept the unexpected. What tremendous faith....believing in what is unseen. God could have gifted Nathan and his challenges to another couple, but He CHOSE you and Mike. There was a reason, and we are finding out that reason.....because you are so loved that perhaps thousands are now praying for Nathan, and that you are giving him steadfast love throughout his physical fraility. I personally believe God puts us through suffering and challenges because he is molding us into something far greater for His good. My if you two aren't an inspiration for your family and friends.
Bob and I will continue to pray....Love you so much.