Thursday, December 29, 2011

This time next week

This time next week the worst part will be over. God willing, James will be out of surgery and recovering well. But that is next week, and building up to that is rough. Getting everything ready to leave for a medical trip is so hard. What to bring? And how exactly do you safely pack Hip x-rays so they don't get bent?? Pinterest doesn't have any creative cute ideas for that one :-/

We did have an answered prayer though. Our housing is taken care of for the trip. We will be staying at Haven House. It is like Ronald McDonald except that you do have to pay a small daily rent, but it is only $30! They provide breakfast and dinner for the families that are staying. This is a HUGE weight lifted off our shoulders and it really ease the financial burden by several hundred dollars for housing. My husbands work changed insurances and it will take effect Jan 1st. This is really scary for us and we are stepping out on Faith that God will provide. Because the new insurance only covers 80% of this surgery when our previous insurance was going to cover 100% after the deductible. And we had not budgeted for this since it is a change that happened last week, when this surgery bus is rolling and cant stop now. But I am grateful for the insurance that we DO have. Everything else will work out. 

In the meantime, James is doing so great. He is the funniest and brightest kid I know. He got a LeapPad for his birthday and that is his most favorite thing EVER. It amazes me how quickly kids can pick up technology. He also got new braces this week. They were exactly what we ordered but will work for now. The company messed up on some things and are going to make him some new ones. Good new is he will have what he needs post op and that is the most important thing. I think he likes them much better too. They have a hinge  on the ankle( that can be locked) and I think they are more comfortable for him. 

We had a wonderful Christmas. This was the first year that James seemed to really get excited about Santa and presents. He had a wonderful time opening and playing with his toys Christmas morning. Then his Grandmommy and Papaw and Aunt LaLa came over for brunch. It was a very relaxing a fun day.

I will be using Twitter to update about James surgery and it is linked to James facebook page so if you want the updates feel free to join James' facebook page.

Thursday, December 22, 2011

Fear and Anxiety

I am afraid! 

There I said it, and it is not a shameful thing to say, although my head wants to make it shameful. I am afraid that my son will die during surgery or from some complication after.  I am totally consumed by this thought at times, and I know that it is not from God. I have this need to make others feel comfortable about James' surgery. I say everything will be ok. When others tell me everything will be ok, I smile and say of course, but inside I am thinking " You don't know that" "Everything was supposed to be ok when we brought him home from the NICU too" I put on a strong face to the world because fear is weakness and weakness should be shameful...right? But that is not what God's word says about weakness. 

The apostle Paul found his strength in God, He reminds us that, “I …have …been in prison …frequently, been flogged …severely, and been exposed to death again and again. Five times I received from the Jews the forty lashes minus one. Three times I was beaten with rods, once I was stoned, three times I was shipwrecked, I spent a night and a day in the open sea, I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my own countrymen, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false brothers. …I have known hunger and thirst and have often gone without food; I have been cold and naked. …Who is weak, and I do not feel weak? Who is led into sin, and I do not inwardly burn? If I must boast, I will boast of the things that show my weakness. …I will not boast about myself, except about my weaknesses. …[God] said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong” (2 Corinthians 11:23-12:10).

I think I have read this over and over a hundred times tonight. To be able to say that my weakness is my strength, and that I delight in my fear ...Wow! I mean it complete shifts how I view my fear and anxiety. I wish I could say that I am at a place, where my fear over the dangers James having surgery aren't controlling my thoughts, but honestly I am not. I am on my way I think. I don't feel as ashamed about my fear because just like Paul I will not boast of myself and how "strong" I am because I am some "super mom" that can handle it all. Instead I will boast of my weakness of fear and how God is bringing me through this storm of anxiety.  How freeing that is. I don't have to pretend that I my fear isn't controlling me because when I give that to God his power will rest on me and calm my fears.

When I started typing this post, I was in a much darker place.  I came hear to vent about how unfair and unnatural my life as a parent is. I came here to whine. But God really has changed that just in the act of typing out my thoughts. I typed out all the negative and unfair things. As I was typing and reading back over them, I could see how selfish and boast-full of myself they were.  I realized that what I was really typing out was a list of how I thought I knew better than God, on how to handle fear. 

It brings me back to this Christmas season in a way. The fears that Mary must have had at times. To know that your child will endure pain and suffering beyond anything she could even understand. But yet she was still willing.  Why am I not that willing all the time? Why do I hold on so tight to the thought that I have to be in control of my own fear that I don't allow God to show me just how awesome He is? My answer is, I don't know. It is one of my many weaknesses and I am so thankful that God's grace covers me and redeems me fresh and new everyday so that I may boast of His goodness and grace.

Merry Christmas to you and your families! My the peace of God love and grace surround your homes :-)

Wednesday, December 21, 2011

What is PERCS and why does he need it..

Since so many have been asking me what the surgery James will be having is and why, I figured I would answer all that here and everyone can read at your leisure. I'm nice like that :-) 

Ok so here is the Medical mumbo jumbo. Tendon release is a surgical procedure to cut through or disconnect a tendon  The procedure normally involves cutting the tendon and allowing it to retract towards the junction of the muscle and tendon.  The purpose of tendon release is to identify and surgically remove (resect) the area producing symptoms while protecting the normal surrounding tissues and their attachments. Tendon release may also involve removal of unhealthy surrounding soft tissues or bone to promote an improved healing. Tendon release is commonly done to relieve tightened or shortened muscles or decrease friction irritation. Sometimes the tendon is re-routed (transposed) to maintain muscle function. 

It is common for kids that have had selective dorsal rhizotomy surgery to need this additional surgical procedure  to relieve limited motion in their joints. At James' 1 year sdr follow Dr. Park told us that he believed James would need this surgery, but we all agreed to try and see if a year of stretching and PT would allow us to avoid it. It was a long shot but we tried it anyway.  Dr Dobb's, pediatric orthopedic surgeon, uses a minimally invasive procedure to lengthen the tendons called PERC. This allows the muscle to return to its normal length and enables the joint to straighten. The most common tendons that need lengthening are the hamstring and/or heel cords. They will be also looking at James calf muscle and it is possible that it will be released as well.

The lengthening is done in the operating room through small incisions where a controlled lengthening is performed. No casting is required, which is awesome news. The older version of tendon release require long term casting. Now it is still possible that they will not be able to release what they need to just with the PERC procedure and they might have to do a tradition release as well. That wont be known until we get to St. Louis and see Dr. Dobs. Most kids begin physical therapy the day after surgery. Post-operative bracing is used for standing and advancing with walking. The size of the brace decreases as James get stronger. 

Now the everyday reasons that James needs this surgery. James' stroke caused his CP, and because he could not move and develop normally his hamstrings and tendons weren't stretched like other kids would have been in normal everyday movement. After his SDR his muscles were able to moved but his tendons were shorter than they should be and limited his movement. We have stretched and stretched but just cant make up the gap that is needed for a more normal walking pattern. Yes, there are some con's to the surgery. James will be set back a little but in his rehab but we believe that will be temporary and short-lived. We have gotten the opinions from several different physical therapist and they don't all agree but we have decided that this is what is best for James and our family.

Our local ortho does releases, but we feel that he is not experienced enough for children that have also had the SDR. I trust St. Louis and the extensive experience and research they have with kids like James. Especially Dr. Park. Lets just say that if Dr. Park asked me to stand on my head and spin and sing Dixie, I would be clear my throat  and start spinning! That might sound really extreme to most of you but if you had seen your child's life change by God's guidance and Dr. Park's hands you would understand. so if he put his trust in Dr. Dobb's so do I. That certainly doesn't relieve my worry and anxiety over my son having another surgery. Cause I could right a book on that right now but I am trying to keep all that under control until after Christmas. So there ya go. We are headed up to St. Louis on the 1st but his surgery isn't until the 5th.

*UPDATED 12/22/11* There are specific prayer requests that I would like to ask of my prayer warriors out there. 
1. Our hotel / Ronald McDonald housing 
2. Good Pain management post op
3. James to be calm and fear free during his hospital stay
4. Safe Travels to and from St. Louis