six

1) Thank you to all of you who prayed for me to survive going to one period of regular school in order to be enrolled in Homebound. It was a difficult morning, but we made it through. It was nice experiencing the first day of school with my three brothers-taking pictures, dropping the twins off at middle school, etc. This is my prayer for senior year, and if you could pray it for/with me this year it would be much appreciated:
Dear Lord, may senior year be a year where I grow closer to You & bring hearts to You wherever I may be. May I touch people's lives by encouraging and inspiring them by Your joy that radiates through me. May I use the leadership role given to me as a senior in a positive manner, a manner in which glorifies You by setting a good example. When this special year comes to a close, may I be thankful for the memories made & lessons I learned. Whatever You may have perfectly planned for me after high school, may I be at peace with what happens & wherever You may or may not take me. My senior year is Yours Lord, Amen.
2) Yesterday afternoon, we returned to my main doctor, Dr. Patel after many months (missed monthly appointments due to hospital stays in other cities), who I actually missed dearly. I joked with him that he'll be in my bridal party one day because he's responsible for keeping me alive these last  few years-and probably will be for many more. We had an awesome appointment with him, he spent a hour and a half with us (just another reason he's the best), he addressed all of our issues we had and he spent time thinking out loud of other ideas we could try to improve my health and overall quality of life.
3) This morning, I am going to my pain management doctor to have several, several trigger point injections from down both sides of my chest down to all over every area of stomach. He also will be giving me nerve blocks for my facet joints at three disks at my low-mid back. I will be partially sedated (thank goodness) but am still nervous about remembering the procedure and the pain I may be in during and after. Thankfully, when we had my initial pain doctor appointment last week, it went SO well and was truly an answered prayer that we've found a doctor who wants to help me manage my symptoms and is a strong Christan man with a big heart, so I trust him and what he and his staff are doing. I'm also nervous about how I'll recover from the anesthesia, even though I won't be put all the way under, I have had issues recovering in the past. Our hope is that these injections will take away some of my pain-for some people it lasts a few days, others a few weeks, others a few months. However, with the amount of pain I'm in (and it's been increasing) any type of relief would be wonderful.
4) On Friday, we meet with the surgeon about the GJ tube, which with Dr. Patel's blessing, will almost certainly put in, unless the surgeon says otherwise. Dr. Patel explained to us why this tube would be different than a NG/NJ and why it would help me. Hearing his words of reassurance was a great blessing and provided me more comfort about the surgery. We will learn more details at our appointment Friday, and three doctors have already said the surgeon we're going to is excellent so that was also reassuring to hear. When I get the surgery will depend on when the surgeon is able to fit me in and also when it fits in with our schedule, as you have to spend time in the hospital after the surgery and my body recovers very slowly, so we need to find a time where my parents will be available enough to attend to me. The maximum amount of time it's safe to be on TPN is running out (although it's never really safe to be on TPN in the first place) so this tube needs to be placed soon because as soon as the weekly labs begin showing that the TPN has damaged your liver, you must get off it right away and will have irreversible damage in your liver and will live your life with a chronic liver disease.
5) On Tuesday, we are headed back to Texas Children's Hospital in Houston for some appointments. We have a cardiologist (who specializes in POTS) appointment (every new doctor we goes to asks who our cardiologist is and we knew it was smart to have one for every POTS patient so I'm finally going to one Tuesday morning) and I'll also have an EKG. Following that, I will go to an ophthalmology appointment, as I've been having some issues with my vision. On Wednesday, we will return to a POTS neurology specialist who we saw a month ago for a follow up.
6) Although it's only the second day of school, I'm already having work roll in on top of me still having to finish my college applications. (I haven't turned a single one in yet and I'm worried that someone could be taking my spot at a college I want to attend to.) Both college applications and school work (yes, you do have to work hard senior year...at least the first semester hehe) are stressful and with all that's going on with my body those tasks are increasingly difficult for me.
Those are my top six prayer requests I ask ya'll to pray for right now, but know there's several other issues going on in my life as well. I continue to try my best to make the best of each day and approach every moment with a smile on my face and a positive attitude. I really will do more in depth blog posts about what God has been teaching me lately and what's been going on in my health journey, I just can't give a time frame. Thanks for all of you who continue to pray for me and support my family & I, we are grateful to know we have a selfless, caring community ready to help in many ways (including prayer) whenever asked. What an amazing way to witness the body of Christ in action.

adios nj tube

After multiple complications with several nj tubes, today my mom & I went to the ER and my GI decided to remove my nj tube and not insert another one. We will be meeting with a surgeon as we pursue the possibility of a surgically implanted GJ tube. (I am still no longer able to take anything by mouth without extreme pain and am down to 110 pounds. I've been put back on TPN a few weeks ago, which isn't good, since I couldn't tolerate any nj formula feeds.) Prayers would be greatly appreciated for wisdom, faith and discernment as my parents, doctors and I continue to make choices and decisions in our mission to get me healthy. Once things calm down (College applications, lots of doctors appointments, boys starting football, my dad's upcoming family camp and school starting Monday is keeping my family and I very busy!) I'll do my best to write a complete blog update, because a LOT has happened since my mom wrote the last real blog post. Hope everyone has had a great summer!

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go." -Joshua 1:9