Day 4 MN {luck ran out}

Hello guys,

Well our luck ran out today. As nervous as Mike and I were about the “inner findings” of Trey we were most afraid of what we would hear today when the orthopedic doctor looked at his neck and spine.

Fist let me add to yesterday’s saga…Trey made it through the night with out a peep but…it took him half of the day to pee and when he could physically no longer hold it…it must have “burned” because the look of agony on his face made him afraid to go the rest of the day…he’s “all good” now but I was a bit afraid that we were going to regress in potty training because he would become afraid to us the toilet, have an upset stomach for who knows how long, and maybe even have to deal with a UTI (yes, boys get those too). Like always, Trey came through and preformed with flying colors and just in time to send his urine to the lab for today’s fed ex pickup.

Also, not once today did we hear Trey complain about being sore or even mad about the huge bandages still taped on three different places on his little body. I thought for sure when we drove up to the hospital, for the fourth time that he would “freak out” at the sight of it because of what he endured yesterday but, nope, NOTHING! He walked along as happy as could be and turned heads with every corner we turned, every elevator we rode and every floor we visited. We hear how adorable he is where ever he goes, he brings happiness to so many people that he encounters Y I wish I would have taken pictures with all the co-eds that came up to Trey this week to say hi to him and tell us how cute he is…it would have made him smile one day

Our first appointment with Dr. Shapiro (Neuro psych) was very positive. Trey is mentally “normal” as we suspected and scored above normal as far as his memory is concerned which impressed Dr. Shapiro immensely (I was waiting to hear that from her ~ any bit of good news keeps me going). Treys results regarding his brain function along will the blood and urine results are a good indicator as to which MPS disorder Trey may have. Nothing is “straight forward” as we are finding out and there are extreme ranges of each of the MPS disorders but having normal cognitive skills help them eliminate which enzymes he may be lacking. Dr. Shapiro would like us to remain very aware of Trey’s learning abilities as they could regress should he have an MPS disorder, including MSD that “usually” affects the brain.



Next was, Dr. Polgreen (endocrinology). She had ordered more blood to be drawn from Trey today to test his level of growth hormone to see how active it is in his body. We should be getting a call from her in about a week to let us know the results of this blood draw. If the initial test show that Trey’s body is not producing GH, than a four hour test would be advised. In this test, over a four hour period they would introduce adrenaline to his body to see how much GH he produces in the pituitary gland. We had decided that the next time we follow up with Dr. Whitley here in MN we would also be sure to meet with Dr. Polgreen.

And finally, on to Dr. Schwender with the Twin Cities Spine Center . I just knew that Trey’s kyphosis (curvature of his lower back) had progressed for the worse but to what degree I wasn’t sure. I had been praying that I was just being too “clinical” with him at that maybe it wasn’t as bad as it looked to me. I was right, it was bad and according to the doctor very bad. Trey’s curve went from a 20 degree curvature in July, 2007 to a 62 degree curvature today. I was so heartbroken to see the life size x-ray’s of his little torso all lit up and hanging in the room…the images of my babies deformity was as big as life. We were told to repeat the x-rays in 4 months and if the curve becomes greater than 70 degrees, surgery is recommended. Mike had felt that after this spine appointment what ever wind was left in his sails of hope was let out. Of course Trey had no idea what we were being told and the surgeries that he may have to endure but to keep the pain on our faces from him was excruciating…he is very aware of my expressions and kept staring at me, thank God he never asked why I was so sad.

After this news, Dr. Schwender wanted to take more x-rays of Trey’s spine only this time of his atlas and axis (C1 and C2 vertebra) with Trey looking up and looking down. The doctor was looking for range of motion in these two vertebra. The C1 and C2 are not supposed to move around. We have been told so much troubling news about this area of Trey’s spine in the last two months that all we could do was hold our breath at the result of these findings. To our surprise, the x-rays showed a slight amount of motion but nothing to act upon at this time, only to keep close watch of.

Dr. Schwender took full spin x-ray’s which also showed him Trey’s hip’s. He told us that eventually (as soon as 5 years old) Trey would have to have hip surgery to ease the hip dysplasia that was evident in these full body x-rays. This too we will keep a close eye on and will be looked at in the full spine x-rays that we will have taken again in March of ‘09.


Tomorrow we have one final meeting while we are here and that will be to wrap up this week with Dr. Whitley. From there we are on our way up North to see our two big guys and spend a day with our family before we head home on Sunday.


I don’t know what to say or feel, all I do know is that every doctor we met this week told us to keep doing what we are doing and to let Trey be a normal, active little boy~we shall follow the doctors orders


Humbled by your love and support,

Mike, Cami, Drake, Broc and Trey