We have found the great pumpkin!
We went to Riley yesterday to meet with Developmental Pediatrician Dr Dusick and the Ophthalmology Doctor. Instead of reducing meds for Nicolas we added one. Nicolas still holds his hands, jaw, and toes tight...so we are going to try a muscle relaxer to see if this will help in our efforts to get his hands open and encourage him to open his mouth more. The bad part is that this med can cause him to be sleepy and he is already sleepy! If we don't see results we will take him off the med. It addition to this, she wrote a scrip for hand splints. Nicolas finally made the growth charts in ALL areas! Shockingly...he is almost exceeding the chart in height to weight ratio...No he is not really tall...Have you seen his parents!?! HA! So Nicolas' is on a diet...no more pureed Twinkies for you big guy! Instead of 32 ounces a day we are cutting back to 29 ounces a day. We are switching formula once again...we wanted to get off Nutramigen since it is not necessary anymore because he is tolerating feeds...We are going to try Infamil's Gentlease. As of last night we took him completely off the night time drip feeds...He will now get 6 meals (by bolus/tube feed) at 145 ml a day. Last night he did great! And he started making some noise around 6:45 this morning....I believe he was saying..."Where's my food?" As far as his heart rate...she is backing the monitor back off to 60 and said that is the average low for his age. I believe that is everything from the Developmental team. During the Ophthalmology visit the doctor dilated his eyes and found that all parts are there and they are working correctly. We will have a follow-up with both offices in March.
Today Nicolas' ACTH shot will be .3 mls....3 weeks to go! He is still having a small spasm a day and can be a little cranky when moved around. He mostly wants to hold still. In the evening he enjoys moving around a little more...last night we were groupies at the GDog and Jake Concert! That is the name of Jake and Garrett's Rock Band for Play Station! It rocked!
This Friday is Nicolas' Halloween debut! Our chunky little pumpkin is going to look so cute! G is pretty excited about his costume...all I'll say it that he practiced using the whip all week...Miles is tamed! And scared! Check out the blog page on Saturday!