Update on Nathan

I know I am not the most eloquent writer, but I write this with an honest and heavy heart.  The last few weeks have been hard on us to say the least.  We are emotionally and physically drained.  We have received what seems like blow after blow and I would be lying if I said I was not ready for some good news.  

We took Nathan in for his MRI and EEG on March 4.  He went under general anesthesia and had the MRI.  He was and is always so brave at doctors’ offices and hospitals.  He came out of the anesthesia very agitated.  They had an IV in his hand and he was not happy about it.  The nurses could not seem to get an accurate answer if he would need it at the EEG unit and they did not want to take it out in case they had to put it back in.  After the recovery room, the wheeled him up to the Epilepsy Monitoring Unit and were able to remove the IV.  He was much calmer after that came out.  We then spent about an hour and a half with them hooking up all the electrodes to his head.  He lay on the bed so patiently while the technician used a sharpie to mark his head and glue that stunk and then finally wrapped his head with gauze.  He had to carry around a pouch with the monitor if he got off the bed.  He was very pleasant the whole time we were there.  I had been nervous that keeping him in a room for 24 hours would be more difficult, but once again, he just amazed me.  I would love to say that the sleeping arrangements for Jay and me were ideal, but let’s just say, I got to snuggle with Jay’s feet that nightJ

The next morning the Doctors came in and told us that his EEG was normal!  There were no signs of the min seizures that they were looking for.  They did say that his brain slowed down at night, which is indicative of all the things that are going on with him.  We really don’t know what that means, but do have another big appointment coming up that we will have a chance to talk in depth more about all of this.

On Friday, March 7th I received a voicemail from Nathan’s Neurologist that went over the results of his MRI.  I was glad that he left a voicemail since there was no way I could have ever repeated the information to Jay.  It made it easy for Jay to listen to it himself.  His comment was that Nathan had “Progressive diffuse cerebral and cerebellar volume loss since 4/2012”  They compared this MRI to the one they did in 2012 and have determined that there is volume loss to his brain.  Basically he has lost brain matter.  He said clinically, it is what was expected, but still they do not have a reason as to why.

Next up, was our Ophthalmology appointment on March 13.  That was terrible news.  We were told that his eyes were significantly worse since November, 2013.  He said that he is basically almost completely blind and considers him “light perception” only. All of this information together just got to be too much to hear.  We are completely devastated by the fact that 5 years ago, we had a healthy little boy who we never would have imagined this would happen.  I don’t know why this is happening.  Jay and I unfortunately are in the place where we are racking our brains trying to figure out what we may have done to cause all of this.  I know in my heart that we did not do anything, but as a parent, I can’t help but feel responsible.

On April 1st, we will meet with the Neurologist and the Mitochondrial DNA department heads to hopefully get the results of the DNA they took back in November.  It was sent to Harvard for analysis.  The tests that they are looking for are life threatening/ life shortening illnesses.  The fact of the matter is

that we have to somehow gear ourselves up to hear potentially bad news and for the life of me, I don’t know how to do that.  

Something is going on with Nathan.  He is regressing in a way that no one understands.  It is always so frustrating when you take him to the best of the best Doctors and they just don’t know.  The truth is that on April 1st those tests may not reveal anything and we would have to go to a 3rd round of DNA testing, which would mean another 4-6 month waiting period.  We need answers so that we can help Nathan.  

I would desperately like to ask all of you to please say a prayer for Nathan as well as our whole family.  This affects Madison, Jay and me in a way that I can’t describe.  

Thank you,

Stacey