"Oh darn it!"

I started the blog the other night, but after driving home from Milwaukee and a night on the unit for a VEEG. Loading this picture is all I did.

Then I started to write this morning -
He is still sleeping, but starting to stir... Today we are headed to see Dr. Winsor in Hartford City. She is amazing, a wealth of knowledge, and one of the few specialist that is reasonably close. Maybe this afternoon we will have some answers, maybe not.

And now...
We have answers, but not solutions.

Why the title? Those that know Bubba know he has a mouth when he is angry. In an attempt to let him vent without the language, we have tried to teach some phrases. He still tried to push buttons, but I was really happy to hear "Oh darn it!" more often than other phrases. It gave a nice comical moment to a sometimes intense situation. It really just kind of sums up our week. 

Oh darn it!

Ayden has not been himself since this summer when he stopped swimming and diving down in the water. We went to Wisconsin Childrens in July, but there was nothing beyond clinical signs of an issue. So, we had some nice chats and said goodbye.
4 months later, Ayden is still tired, more than he should be. He lacks interest/energy to do some things he used to do. For two months the school has been charting what we nicknamed "crazy eyes". They are periods of intermittent dilation that do not respond to light. He falls more. He talks, but trails of or gets slurry more often. So we keep calling and talking to our neurologist, we tried adjusting his meds, but nothing changed.
We were advised to bring him to the ER on Tuesday. Bub and I headed there hoping for some answers. The answers we have are good and helpful, but not solutions to the problem. We had a fast MRI, and still no visible signs of hydro (not that we expect to see it on film). Then we were admitted to the Epilepsy Monitoring unit for a VEEG. We were able to record multiple events of the dilation and drooling episodes and get a full night of monitoring. We know there is no underlying seizure activity so it is not seizures. The neurosurgical team on our admit were not compelled to tap his shunt, so home we went. Fortunately, our neurologist consulted with Bub's neurosurgeon and he wants to see Ayden to address our concerns, but we do not have that appt. set yet.
All of the "loss" we see is unacceptable and cannot be ignored. Our neurologist understands and recommended we go to his ophthalmologist to check for pressure on his optic nerve. We did that today, we had to go to Hartford City to see her before December, but as always, it was worth every minute. She reassured me that all of my concerns were valid. At this time, there is no pressure on his optic nerve. His eyes were already dilated enough we didn't even have to give the drops for her to check. She told me to call Wisconsin today to follow up and keep the search for a neurological cause going. I did not call today, but I will not wait long.
Our neurologist also wants us to meet with Bub's PT (Our Parkview PT that has known Bub since he was 2). He needs documentation from her about the actual loss of gross motor, we have that appt. set for Wednesday.  Her report will be faxed to WI along with Dr. Winsor's report. As of Wednesday at noon our "homework" will be done.

So now what? We wait. 

 We enjoy the holidays as we can, after all Bub has his Christmas program in less than 2 weeks. I feel better knowing that the neurosurgeon we meet next will be OURS; The surgeon we went to Wisconsin for in the first place. Our hope is he will have some advice, ideas, or guidance. It is a challenge to convince others what your gut is telling you, so for now we establish our "case". Sometimes you really can feel like that is what has to be done. Could we have our pediatrician send us somewhere to get the shunt tapped for pressure, without any doubt. The problem with somewhere else, is it means starting over, and we really do like where we are. If we feel it is getting worse or progressing faster, we will do just that.

Does it mean when Ayden is sleeping well past his normal wake up time I don't worry about coming into the room and finding something I don't want to see? No. I will worry, its my job. We will keep a careful eye and look to the Lord to provide some solutions soon. He has come too far to lose anything for a long period of time. I am so thankful for all of the people who care for Ayden and will keep an eye on him when I cannot. I am thankful for the Hemi Mommas that have helped me feel sane and know what to ask over the past week as I have felt like I have to plead my case for Bub.

 Thank you to everyone who keeps Bub in your thoughts and prayers.