Shriner's Hospital

As I am sitting here writing this post we are getting a ton of snow and I have a little helper sitting in my lap, Trinity! She wanted in on the comments I made about our visit on Friday to Shriner's.

As most of you know we had our first appointment with Shriner's last Friday. It was a long day of seeing many doctors, but it was a refreshing day for us also. I really don't know where to begin. We had our first appointment at 9:00 am where Trinity had an x-ray and ultrasound done. After we were done with this we were called into a long hallway with about 6 different patient rooms. We were one of about 8 families that were being seen that day. I don't know that all of them were spina bifida, but we did meet one family that has a 2 year old son that has spina bifida and it is the same location as Trinity's (L5-S1). We got to spend some time talking to them between appointments. I don't want to drag this out any longer then it needs to be so I am only going to give you the highlights of the day. The x-ray showed that Trinity has a severe curvature to her spine (scoliosis). Her curvature is about 38%, not real good. For most of you that have spent some time with Trinity you will notice that she tends to lean to the right a lot and that is why. Nothing will be done about this right now because of her upcoming surgery, but we go back in 3 months and they may look at putting her in an upperbody brace. The ultrasound looked great. Trinity is voiding like she should be and her kidneys look good. We have an appointment scheduled in February where they would do some different test on her bladder and bowels, but the Urologist that we seen said he didn't see any reason for the test to be done and that they would do some testing in about 3 months. So Shannon and I are going to pray about this, but we feel pretty good about listening to the doctor at Shriner's and waiting 3 months. We will keep her on the Bactrim (anti-biotic for her bladder) for now, but he hopes to get her off of it so she can get her immune system up. We also met with a Neurologist, Neurosurgeon, and an Orthopedic Surgeon. We plan to keep Dr. Haines, from the UofM for now. We feel more comfortable with him and the fact that Dr. Gilmer referred us to him.

An exciting point in our day was meeting with the PT and OT. They are having a chair made for Trinity where she will be able to situp in her highchair and her stroller! We are really excited for this because we feel like Trinity spends a lot of time having to be on her back since she can not situp. They also gave us a chair that can go in the tub so Trinity can take baths and we can also use it in our family room and she can watch some cartoons with Aubree while being strapped in her chair. I will be sure to take some pictures of these so you can see what I am talking about. They have to make the other chair and it will be done in about a month.

We were searching all week for a place for Aubree to go so we didn't have to take her with us, but God knew what he was doing. We were glad that Aubree was there. She got to see kids of all different needs and made some friends along the way. I can say that for once I felt like we were not a minority and we fit right in with all the other families. I really wish I could have had a video camera so you could have seen how our day went. It was a GREAT day! I felt renewed and refreshed! How great is it that we have hospitals in this world that help little kids that are in need of so much and do it at no cost to the patient. You don't have to worry about if your insurance company is going to pay for it, you just go with the piece of mind that they are going to give you the best care for your precious child.

I got the chance to drop of some pop tabs and I talked to the guy about where the money goes for this. The Women's Auxiliary takes them to a donation center where they get money for them. They then use the money to help buy wheelchairs for kids. How great is that! So don't throw those tabs away, SAVE, SAVE, SAVE!!!!

I know this is a pretty long post, but I wanted to fill you in on our day. I know there is still a ton I want to say, but I will save it for another post. Have a great week!