Tuesday, March 9, 2010

Appointments/Updates/Birthday

Time just seems to be flying by lately. It has been two weeks since Trinity turned 2 and I have not been real good about updating the blog, so I apologize. We have been really busy with appointments, therapy, and just life in general!

Trinity turned two on February 21st! She had a fantastic birthday spent with family and friends. We did a ice cream cake this year and she loved it. Because Trinity can't eat solids, ice cream is one thing that she tolerates, she must get that from her dad?!? She got some fantastic toys that I am not sure if her sister plays with them more or if Trinity does. What an amazing two years it has been. Sometimes feels like a roller coaster ride, but I wouldn't have it any other way.

Trinity has had a few appointments lately. We finally got in for her TLSO fitting and she will get that next week Wednesday. I was amazed at how well she looked in just the cast, I can't wait to see her in the brace. This one will be different from her last one. It will be two pieces and should give her more support. They are going to see how well she tolerates it and would like to see her wearing it most of the day and night. Eventually they might look at doing a brace that goes from the armpits down to her knees while she sleeps. We seen Dr. Walker and Dr. Koop (orthopedic surgeons) yesterday. They are going to work as a team on Trinity instead of just having one doctor. Trinity is a very hard and rare case and they feel more comfortable having two opinions instead of one. I will admit it is hard sometimes trusting the opinions of doctors and wondering who you should trust. We have heard so many different opinions on Trinity and her scoliosis that sometimes we are confused by what the plan is next for her. Just to remind you back in July Trinity had a curve of 56 degrees and today in the same position she is at a 67 degree. From history it looks like about every 6 months Trinity is jumping 10 degrees in her curve. With that being said they are going to try the brace and hope that it does the trick of slowing down the curve so we can get a few more years in before having to do a surgery. If they see that the brace is not working they would like to use all the options before doing surgery. Mostly because of the size Trinity is but also because it works better when the kids are older. So it is going to be a waiting and guessing game from here on out with Trinity. They will see her again in about 6 weeks and do another x-ray to see what she looks like in her TLSO and what the curve looks like without it.

On Thursday we will see a PM&R doctor that will evaluate Trinity and see her timeline for a wheelchair, bracing of the legs, and some other things. I am excited to see what this doctor has to say.

We are also waiting to get into the feeding clinic, but for now the school has provided a speech therapist (that also has a medical background) and we love her!! She is going to try and get approved to see Trinity at least twice a week. She will work with her eating and speech. So we are crossing our fingers that this works for Trinity and that Rachel can help us figure out what is going on with Trinity.

On top of all of this Trinity has a ton of evaluations through the schools for her therapy. So things have been really crazy here lately and will be the next couple of weeks.

Sorry for the length of the post, but I had too much to update on. We would really appreciate your prayers and that God would work miracles with the new TLSO. We continue to trust God through all of this and know that His plan for Trinity's life is much better then ours!

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