Moving onward:
AJ - Dear, sweet Aj.
Has all the doctors scratching their heads. His condition is so rare that there is little research done on it and the research that has been done on it is conflicting in the course of treatment. Congenital Horners Syndrome by its self is no big deal. You seriously just have one pupil that is smaller then the other, end of story.
The big issue is what caused it.
The Congenital part means it was present from birth on and could have been caused by birth trauma, or during development. However if it wasn't caused by either of those two issues (less than 2% of congenital cases) then that leads to the scary issues such as: tumors, cancer, or cysts anywhere in the body from the brain to the butt. Which leads the doctors to question how to carry on with AJ for 2 reasons, 1. There was no known birth trauma (forceps, vacuum etc) and 2. It was not picked up on until he was 2wk. Of course that doesn't mean it wasn't present, I mean how much does a 2wk old have his eyes open so it could have been easily missed.
With that the eye doctor ran 2 relatively easy test a urine test and abdominal ultrasound. Both test came back normal. This made everyone happy, to an extent. Our eye doctor still want to chat with one more doctor (a neurologist) to make sure she was proceeding correctly. Well the neurologist though it would be a good idea for her to get a look at him because it is a nerve issue and all the conflicting data.
So today we set the big kids to school, Matteo to Noni's and headed to Templeton to visit her. She of course feel in love with AJ who performed with flying colors. He was giggling and cooing for her and laughing at everything she did to him. She said he looks wonderful and from her perspective he seems totally normal but...
she wants do an MRI to rule out everything. Ok, doesn't sound that bad until she says, "The risk of putting him under are well worth it to rule out the scary list of causes." Oh wait a minute you want to sedate my baby. Oh and there is no where in our area that can do this so we have to be sent to Santa Barbara.
"You really think we should do this?"
"Yes, if it was my child there would be no question, I would have the MRI done."
Well how do you say no to that. OK sounds good, when? The doctor answers, "No rush anytime in the next 2 weeks."
No rush?!? I though she was going to say the next couple months! HAHA I guess a rush means tomorrow in the doctor world!!
So we are going to do an MRI, that everyone believes will find nothing wrong!! I am happy that we are doing it though because then we will know once and for all that he is good and there is nothing scary going on in his little body.
There you have it. On a cuter note when I got back to Noni's to pick up Matteo, we had the opportunity to Skpe with our Auntie Karlee. She was happy to see the baby and Matteo was beyond excited to see her. He was kissing the screen and dancing for her. It was pretty cute. I am trying to convince her to meet me in Santa Barbara when I am down there for AJ MRI! When we were all done we closed up the laptop and Matteo leaned down and whispered "bye bye Karlee" Like she was inside the closed up laptop. It was to cute.
With that one last picture of Auntie Karlee and AJ. (I am sure I will get in trouble by someone for posting this picture!!)
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4 comments:
isn't dr. balke amazing! the mri is less scary than it sounds. actually, i was terrified of it, but it was no big deal. we had ours done in slo...right next to sierra vista...you might ask why sb??? maybe it ws different because ours was an emergency situation, but it might be worth asking before you drive. luckily sb isn't too far...
I loved her!!! I told noni, she would be an awesome pedatritician you can just see how much she loves her kids she works for. I really trust her. She said we had to go to sb because it is the closet place with an anistologist and MRI in the same building. I guess She is trying to avoid the ambulance ride across the parking lot or perhaps it was because yours was an emergency.
First, I love the picture of Karlee! Second, is the Anesthesiologist going to be a Pediatric Anesthesiologist? Both of my children had surgeries at a fairly young age and both times a Pediatric Anesthesiologist were used, what a difference. They are specialist with kids...they know how to talk to the kids, the kids are not afraid of them, they are familiar with children dosing etc. and even better they sure know how to talk to Mom and Dad. Markus had his second surgery at 5 and still remembers the Pediatric Anesthesiologist, Dr. Red (he had bright red hair, hence the nickname). Good luck and keep us posted.
Auntie Susan
Thanks for the update. I heard you were going to the Neuro this a.m., and was anxious to talk to you. I held off knowing your life is crazy once kids get home.
Love to all....talk soon?
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