Many new updates to share with you, but let's get to the good news first! Yesterday Trinity had her Orthopedic appointment. The X-ray looked good and the rod has stayed in place. After 3 months of the neck brace it finally got to come off yesterday! Trinity was so excited to get it off! She's a little week in her neck from not using it, but overtime she will restrengthen. They are thinking the TLSO will have to stay on until a fusion is done in the future. The one rod is not strong enough to hold her curve and they just don't think a second rod would be good for Trinity, so we need to keep the TLSO to keep her back supported. They will do a lengthening to her rod in May. We also discussed her feet. We have noticed lately change in the shape of her feet. So they would like her to start wearing her AFO braces on her feet and ankles to keep them from getting any worse. We loose one thing and gain another.
Last week she had some tests done on her bladder. They did a Urodynamics test. This test would help in telling them the amount of volume her bladder can hold and the pressure that the bladder has when the bladder starts to fill. Basically anyone with a normal bladder doesn't show any pressures because when their bladder is full the have the ability to empty it. The test showed that she has a very poorly compliant bladder whose pressure exceeded 20 when filled with less than 100 cc of water. Her end pressure was about 50. This is bad! You don't want to see pressure at all, but you really don't want to see it above 40. This over time can cause kidney failure. So for the next 2 months we are going to be doing a Foley catheter overnight so her bladder does not reach high volumes and continue cathing her 4x's a day with irrigating the bladder twice. If she continues to get UTI's over the next two months we need to see the doctor sooner than our April follow up, otherwise in April they will rerun the tests and see if anything that we are doing is working. The doctor would like us to consider a Vesicostomy. This is an opening in the abdomen that allows urine to drain continuously from the bladder. A small wall of the bladder is turned inside out and sewn to the abdomen. The opening would look like a small slit surrounded by pink tissue. This can be reversed at any age when Trinity is socially ready to be out of diapers. This procedure will help reduce UTI's and kidney damage. The doctor feels this surgery is a good choice for Trinity. There a minimal risks and he has seen very few revisions have to be done. Shannon and I have some praying to do about this.
Some other good news, Trinity was a recipient of an iPad through the local Rotary club!! One of her fabulous teachers Mary Beth, approached them about Trinity and her needs, especially in her speech and how the iPad would benefit. This is really exciting and we are anxious to start getting apps for her. She loves using it!!!
Happy Valentine's Day!!!
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