How are things going?

Well things are going pretty good here. Trinity has adjusted to having the g-tube and is taking her feedings overnight pretty good. We are discussing if we are going to do some daytime feedings or not. She seen the GI doctor a few weeks ago and they want to do a PH-Probe test where they stick a tube down her nose so they can see how much acid and fluid is coming up. We also discussed possibly doing a GJ (gastrojejunostomy) tube which would help with the vomiting, but would not allow her to have her overnight feedings. During the test in the hospital we will also see a pulmonologist to look at her lungs. They heard some wheezing in her lungs during this visit and are wondering if some of the vomiting is because of her lungs. They are going to put her on a stronger steroid and we will use the nebulizer 3-4 times a day. We also had our first experience of Trinity's tube falling out, luckily it was in the hospital and I had the doctors there to show me what to do. I now feel comfortable with it and don't have such an anxiety about it.

Trinity also had a sleep study done about 2 weeks ago. She had significant oxygen desaturations going down to 56%. I will not go into great details of the results but in a nutshell she had an abnormal study and they want to put her on a c-pap machine during the night. We will do another sleep study in about a month and at that time they will figure out the right amount that she needs on the machine while sleeping. For now we are trying to get her used to the mask, which has been a challenge. She gets very freaked out about it and we still haven't got her comfortable with putting it on her face so we will try and work at this and hope that in a few weeks she will be comfortable with it. They also want her to see a ENT doctor to possibly remove her atnoids.

On a good note we had her urology appointment and that all went great and her bladder is working well enough that we don't have to do anything at this time!

Trinity is doing some amazing things and I love every minute of it!! She got a trial wheelchair a couple weeks ago and she loves it! We are hoping to get her's ordered soon so we can get it before the end of the year. Shes also saying some words and although some of them are not real clear I can understand what she is trying to say. It makes me so happy that there are some positive things going on in Trinity's life and that we don't always have to look at the negative.

Trinity with Miss America at Gillette!

Trinity and her good friend Will!