Faith in God is the substance of things hoped for the evidence of things not seen - Trusting God for both Quanity and Quality of Life for Luke

Just wanted to say thank you for your prayers this past week. Luke seemed like he was getting sick on Valentines Day morning, but by afternoon his fever was gone, his heart rate was back to normal and his oxygen needs were beginning to get better. We did end up having a babysitter for the kids that night while we went out with our good friends, Juan and Yoli. I did realize a few very important things that I will try to remember if we have another babysitter anytime soon. For one thing I need to be sure to tell whoever it is that Luke will have times where his oxygen numbers will drop, don't panic what a minute to see if they go up on there own, if not then check his probe, if that's good and his numbers don't get better make sure his oxygen tank is not empty and then if all those things are ok and his numbers don't get better turn up his o2, if that doesn't work turn on the oxygen concentrator and put on his mask. Yep, I had to walk the babysitter through all those steps on the phone, just so thankful that she was willing to stay and work through them. Finding this babysitter was like finding a fine jewel, she is definitely worth her weight in gold, we are hoping she will say yes next time we need her!
Appointment update:
Surgery follow up went great, only took a few minutes for the surgeon to say that Luke's incision sites look great. We did find out that his gallbladder did have some pretty extensive damage, once again reaffirming the fact that we made the right decision to get it out.

Pulmonology appointment went ok, Dr. said that he sounded ok, though more course and junky then the last time we were there. After some discussion on ways to help Luke we decided that we would try to get a cough assist machine for Luke to help his coughs more productive. The Dr. did mention that at this point our main goal for Luke is for quality of life, not necessarily quanity, I'm pretty sure the Dr. doesn't even have a clue to how painful it is to hear those words. Because I want both quality and quanity, I realize that without a touch from Jesus that is exactly the reality of Luke's life. I'm so glad that I have faith in God and am able to put my hope in Him, for He truly is our only hope for Luke's life to get better.

Blood work showed that Luke's seizure medication is where it should be, his liver panel looked good and his other tests looked pretty good also. I'm still not sure if I want to keep Luke on this medication as I'm not seeing any changes in his seizure activity and I'm pretty sure it's causing Luke to be more congested at times, as this has been known as a side effect in many kids.

Luke's Orthopedic appointment was the best appointment of the week. I'm ashamed to say that I was dreading this appointment more than all the other appointments he's had recently. His new ortho Dr. first asked why we were there, then examined Luke and then talked about the findings of his last CT scan. She told us that she's never seen a child like Luke before, his hips are still in socket though unlike so many children that are similar in his diagnosis they actually do come out of socket in the front, but they go back in again. All the other kids that she's seen similar to Luke have the problem of their hips dislocating in the back not the front. The other thing that makes Luke so unusual is the fact that his legs are extended to the point that it doesn't allow his knees to bend. We talked about his knees for quite awhile, I was so afraid that once again I would be told that nothing could be done for them, but no she said that if Luke still has rounded cartilage on the ends of his knee sockets she thinks that she can help get them to bend again. That was music to my ears. We are going to schedule a MRI for his knees and then a follow up with her to see what we find out, then go from there.

The only reason I was able to go into his ortho appointment with peace in my heart is because I truly gave the outcome of the appointment to God. I decided this morning that I would trust in the Lord with all my heart and lean not on my own understanding, in all my way acknowledge Him and trust that he would direct our path, Proverbs 3:5-6. Why am I amazed at the fact that God really does direct us when we allow Him too?? You would think I would know this by now.

Gordy and I are leaving tomorrow, hopefully by early afternoon for our much needed break. Please be praying for all to go fine while we are gone. The kids go to Juan and Yoli's Friday afternoon until Saturday afternoon. On Saturday Natalie will cover the night and Sunday daytime, then Amy will take over until we get home Monday night.

Last but not least please keep my dear friend Annie's daughter Izzy in your prayers Friday, she is scheduled to go in to have major back surgery tomorrow. She will be in surgery for about 10 hours and then be in the PICU for about a week and then another week in the hospital. Also pray for my good friend Lindsey's son Santana who had back surgery last month and had major complications this last week, they found MRSA deep inside the wound, after spending the last week in the hospital he's finally going home tomorrow, but he still has very long road of recovery ahead of him as he goes home with on IV antibiotics for at least 3 to 6 months.

Love in Christ,
Luke's Mommy Sue