Thursday, August 26, 2010


On Monday Trinity had her Orthopedic appointment @ Gillette. They did x-rays of her in the TLSO and her curve is 56 degrees. We are unsure what her curve is outside of the brace because they don't like to do too many x-rays because of all the radiation. This is good for now! I really hate to know what she looks like outside of the brace, but this definitely opened my eyes to how important it is to keep her in her TLSO as much as we can. It has been so hot out and with everything that has been going on this summer I just avoided putting it on her. At least this week we have had a cool down and no humidity so it has made it pretty comfortable for her which is nice. We really need to keep her in this 56 degree range and keep her from getting a any worse curve in her brace. I would like to avoid surgery for at least a few more years. And if it be God's will then I would love to see her make it to the age of 13! (maybe wishful thinking) Question for all you moms, if you have any "cute" onesies that are size 12mth or larger and want to get rid of them or sell them please let me know. Trinity has to wear a onesie to protect her skin and it is hard to find "cute" onsies in larger sizes.

On Tuesday we are going to order her new wheelchair and we are really excited about this! We have had one to trial for the past few weeks and Trinity just loves the freedom that it gives her and it is amazing how different she acts when she is in it. Unfortunately we won't get her new one for about 2-3 months so I am trying to find a place that will rent one to us until we get hers. I just don't feel right taking something away that makes her so happy!

Aubree starts preschool in a few weeks and she can not wait! Trinity also starts her new school year of therapy in a few weeks too. It is kinda exciting because we get to do some in a classroom this year and I am really excited to see how she interacts with the other kids.

I have a prayer request. We met a great family in the hospital and their son Will has been through a lot lately. He spent over 60 days in the hospital and just this past Saturday got out. They have been having a lot of issues with all his meds and it is messing with his heart rate and they are having to put him on oxygen a lot. Will has cerebral palsy and epilepsy. I was so unfamiliar with epilepsy until I met Will. He has numerous seizures in a day and they are trying to control it with these certain drugs, but unfortunately they cause side effects for him. I am asking that everyone that reads this lifts Will up in prayer and ask God's healing on Will. This little boy has been through a lot along with his family. Trinity and Aubree adore him and I am so thankful to have met them!

Shannon and the girls @ Vikings Training Camp!!

Tuesday, August 17, 2010

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!