Change in Schedule

Trinity did not have her eye surgery today, it is now scheduled for next Thursday, January 28th @ 11:00am. This will be an out-patient procedure. Until then we are having to dilate her right eye every morning until surgery. After checking her eyes last week they noticed that she is preferring her right eye over her left eye. So until she has they surgery they want her to be using her left eye more. She really don't like this, but since she won't keep a patch on her eye it is the only way.

Lots going on in our lives right now. Trinity had an Orthopedic appointment on Monday. He checked her hips, did an x-ray of her spine, and then checked her spine. Hips: We talked about her hips popping when we are changing her or playing with her legs. He does not feel like it is coming out of the socket, but can feel a little popping. He is not overly concerned with the hips and actually feels that most kids are better off not doing anything (surgery) because it ends up causing more damage then good. He is going to keep an eye on them, but will leave them alone for now. Spine: The x-ray shows that the scoliosis has increased significantly since the last x-ray. They can't really judge though off of the x-rays because of the inconsistency of how they are doing the x-rays. For instance the last time she had an x-ray it showed her curve at 36 degrees, but this time it was at 84 degrees, a HUGE difference. I am not real sure why they don't position her the same way everytime they do an x-ray, but I am not the doctor either. He checked to see how flexible the spine is when positioning her in a more upright position. He feels that it is somewhat soft, but not soft enough to get it completely straight. He wants to revamp her current TLSO (brace) and see how that works. He would also like to try something in her cart that would keep her in a more upright positon, but because that is not our property it is the schools, we are unable to do that. He wants her in the brace as much as she will tolerate, in hopes that she will keep it on all the time including bedtime. He will then recheck her in 6-8 weeks and see how the brace is working. At that time he is going to do a new x-ray with her laying down and see how straight they can get her spine with positioning her. He feels that we are probably looking at some form of surgery (growing rods) in the next 6-18mths. Honestly that is not what we were expecting. We really thought that with the untethering and the hopes that the brace works she would not need a surgery for a couple years. That is not the case. With all of this being said, we also have the problem with Dr. Walker has never done a surgery like this on a child as small as Trinity. Trinity is a very rare case and they don't see children this small needing the surgery at such an early age. He has done it on a 2 1/2 year old and that is the only one in the toddler years. The problem with Trinity is her weight and height. Trinity is very small for her age and they are concerned about doing a surgery on her while she is so small. This brings a lot of concern to Shannon and I. We did not know that he was so inexperienced with this surgery in young children. There is a lot to think about after this appointment. Trinity still needs to be refitted for her brace and we are really hoping that the brace is going to do the trick for awhile and that we can get her a few years down the road before looking at surgery. God is the GREAT PHYSICIAN!!

We could really use your prayers. We really want the brace to solve the problem for now, but if it don't we want to make sure we are putting our daughter into the right hands (what doctor).

Trinity is doing really good otherwise. She still continues to get some form of a cold about every 2-3 weeks. We are ready for this cold season to be over with so she can sleep at night (and mom too)! Too bad we still have about 2 1/2 more months of this stuff :(

Our thoughts and prayers go out to Haiti and all the people that have lost their homes and their family. So much tragedy and loss. It really makes you think about how much we have and how little we really could live without. PRAY