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.

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 :-)

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

A 5 second post for the best 5 seconds of my life

About an hour ago James stood for 5 seconds in our living room. I never thought that time could stop for just 5 simple seconds. I feel like God knew that I needed some encouragement and to be shown just a hint of the plan.

James 2011 SDR Progress.wmv

I was going through some old videos of James when I got my new cellphone. and I put them all together really for myself to be reminded just houw thankful I should be. See sometimes I forget just how far god has brought us in the journey with James. Seeing his progress over the years in vidoes reminds me just how blessed we have been. So I wanted to share his video story. I would love it if you shared this with your firends on facebook or your blogs. I know that  as a mom of a child with special needs I am always serching for someone that understands and maybe seeing this video will inspire another mom to see the blessings in their lives as well.

Birthday Pictures

Just wanted to be a bragging mommy for a bit. I had James' 4 year pictures done by a photographer friend and I am so in love with the sneak peeks she has just shared with me. I had to share them.

 THIS one is my favorite of all of these. I LOVE images where James is standing and here I just think this captures his personality. So cool and cute and I just want to eat him up!!

Happy 4th Birthday James Patrick

Dear James,

Today you turn 4 years old and I just don't know where all the time has gone. It truly seems like yesterday I watched as the rushed you from the OR and in to the NICU. I go to see your squished up little face for 2 seconds and I touched your little finger. I would be 7 whole days before they would let me touch or hold you again. But it was well worth the wait. You are growing into such an amazing child. Everyday it seems like you say the funniest thing I have ever heard. I swear you are going to be a comedian when you grown up, and I promise to be in the front row laughing as hard as anyone.

Right now you are really into the TV show called WIPEOUT, but you call it the Fall Down Show. Everyday after school you watch it while you are having your snack. We sit and snuggle on the big green chair and laugh at all the silly people. We are even having a WipeOut themed birthday party for you this year.  How I cherish those moments. You are so affectionate and I hope that continues as you grow. Right now you are also all about pretending to be a chef like your daddy. you love to play restaurant and doctor. I think I have had about 4 broken legs and you always fixed them with your magic kisses for me and then cooked me a get better dinner.  Your favorite foods are goldfish, grilled cheese sandwiches and chocolate pudding. You HATE jello! At school you are so very smart. You know all your letters, letter sounds, shapes and colors. you teacher tells me that when she is working with you she gets distracted because you like to kiss her hand and tell her that you love her. You are such a charmer.

James,  This year I have watched God work miracles in your body. Your hips has been 50% out of socket and we were told that they would need surgery. But God choose to heal your hips and at your last hip xray they were perfectly aligned. I know that life holds extra challenges for you son, but please never forget that you are in God's hand and He has a higher purpose for you. It is my prayer that your heart will always be tender to His word and guidance. I dont know why God choose us for this road and life, but I do know that you are up for the challenge. Along with what the world might see as a disadvantage, God sees it as a way to further His kingdom. I dont yet know what that path is going to look like but I know you will travel it with the determination and strength that I see in you everyday even at this young age of 4.

I love you son. More than I ever knew that I could love another human being. You are the child that I spent so many nights on my knees praying for. You are literally the answer to my prayers and the glue that holds the pieces of my broken heart together. You are perfectly and wonderfully made and I am so proud to be called your mommy. Happy 4th birthday to my Sweet Baby James.

Been a long time...

Hi everyone! I know it has been a long while since I have sat down and made a post. I have started several but always ended up deleting them never really knowing what to say. so I will start with James and see how this one goes :-)

James is really doing great! He is growing so fast and well. Time is just excaping from me so fast with him. Everyday he says new things and I am always amazed. We had a beautiful miracle medical report a few weeks back. James' hip x-rays showed that his hips were perfectly normal. I shared this on facebook because I was so excited at this healing. But I forgot that I have special mommy friends on my page that have children that their hips are a major issue. I got about 3 emails saying how insensitive I was for posting about James hips :-( 

He is doing really well in school as well. This year we are requiring him to use only his walker and his wheelchair is not an option. This has been a big adjustment for him and his teachers but everyone has adjusted well. We have seen a BIG difference in his walking due to this. He is faster and taking but bigger steps.

He is just so funny! He is always saying and doing silly things that just crack me up. He is still in love with Blues clues but his new favorite show is Wipeout. But he calls it the "Fall Down Show" he would sit a watch that show all day if we let him. His favorite thing to do is to watch it with his Daddy because they act out what it going on. It is really funny.

Josh and I have had a rough few months emotionally. We haven't really shared with too many this but we experienced another miscarriage. It has been really difficult on my physically because this was a pregnancy that they believe was in the tube as well. And took a VERY long time to resolve physically. It has been a very difficult process, but we are finally back on track. I have really struggled with this m/c because it took me so long to be ready to try again for another child after James. Having so many friends and people close to me pregnant doesn't always make it easier. And being a newborn photographer can be an extra sting sometime but really that has helped me more than anything. Cause I get to be reminded what I am striving for. We are going back to our fertility doctor and back on the medications to help. Those medications will make ya a little more sensitive to things as well but I have tried to keep my sanity.

Josh's work is going well. He received a promotion last week and finally go the recognition that he has deserved for ...well frankly his whole life. I am so proud of the husband, man and father that he is for us. His childhood best friend killed himself last week and that has been hard on him. He and I have both struggled with the anger that suicide brings to those left behind. James has been the hardest hit and we just dont understand how a man could look at his beautiful family and choose to leave them. I just dont understand how you could do that to your child. If there is one positive to take from such a sad and terrible situation, I have seen what a strong man my husband is. And how I am so proud to be his wife. I think those are the highlights. James will be having another surgery in Jan so when we know more I will update about that soon as well.

Finally something to say..

I have been a little out of the blogging world lately. I come and read all my favorite blogs but when I see my blog on my dashboard. I just dont know what to talk about. James is doing well over all. I find it difficult to talk about my worries about James' progress. I am so very proud of him and all that he has accomplished but he does have such a very long way to go, and my fears that he will never meet the goals we dream for him start to creep in. That is pretty much where I am right now. It sort of feels like a holding pattern.

We took a break from formal in office PT. I just needed to feel like he was getting to be a "normal" kid. But I am learning that what I grew up thinking is normal, just isnt the normal that I am going to get to have in my life. God just has other plans for us. I cant lie and say that I am happy about that. I sometimes spend my quite times with God crying and screaming to the heavens my fears and whys. I feel so blessed that James is even with us here on earth when we were told that would happen, but I still grieve what I thought his life would be. I wonder if that will ever pass? Will I ever have a peace about James' Cerebral Palsy? I dont know but everyday I wake up I pray to God that he grants me peace for today.

I am so grateful for the friends in my life. They are always to sweet a willing to make sure activities that James is invited to he will be able to participate. I know that at times they just wish everything wasn't such a big production when we are involved. I do too, trust me. I hate having to say no to activities, but I have learned what I can handle and what I just cant.

James is having a few growing pains right now. His hamstrings and heel cords are just way too tight. It is causing him pain and causing him to act out in his behavior as well. As a parent it is difficult to discipline for behavior problems when I know that my child is in pain. I am grumpy when I am in pain too, but where is the line. Where do I stop making excuses for the behavior and just deal with it? This is the on going conversation in out household right now.  I am torn between knowing how I WANT to discipline but feeling like I cant because like everything else we have to tweak our want- tos in our life. Dont get me wrong James is a joy to be around. He is loving and friendly but when it is bad it is pretty bad.  And I am loosing the support that I used to have. In public I feel every eye on me, when I am seen correcting my "disabled" child. I ever have people scoff at me. And lately even at extended families homes we deal with questioning of our discipline plan. It is just difficult to do what we know is best because we live with it everyday and feel like we have to explain our choices to everyone.

But, life isnt all worries. James has been talking up a storm lately. He is always saying the FUNNIEST things. He wants us to read everything he sees to him. I love how inquisitive he is about the world around him. His favorite show right now is WIPEOUT or as he calls it "The fall down show" He loves for all three of us to sit on the couch and for him  to bounce back and forth between us as his daddy and I make fall down sounds. I took him down to Birmingham for a follow up PT visit and his PT thought that he was doing great. She said that he seemed stronger and she felt he would do wonderful this school year. We do have some very big decisions to make regarding his heel cords and how tight they are. Looks like he is due for yet another surgery. But that will be another post for another day. Here are some of his latest pictures

May

Oh May! Here you are again :-) I am so thankful to be here on this earth with my son that God has allowed me to raise. But parts of my heart are in heaven. So I have been reading a lot through Psalms. I find that really lifts my spirits and helps me to see the beauty and joy that there is here on earth. I truly have been blessed and I know that some in our situation dont understand that. I guess on the surface it is strange to say that I am blessed because I have a son with special needs. But it is true. Yes, I dont always like how the world see James and I dont like how his body can cause him pain at times. But there are many more blessings that there are woes.

This week God allowed me to stop and remember one of those blessings. I bough James little sprinkler. I was hoping that he wold be able to use his walker in the yard and play in the water. That didnt happen but I am sure by the end of the summer it will. What did happen was a moment that I will never forget. I pick James up and proceeded to run through the sprinkler with him ( in my clothes). The giggles that I cold feel from his little body in my arms were really beautiful. We played for an hour until I literally had to sit with him in the mud we had made in the yard and just laugh.

And in that moment I thought about what a  "typical" life would have been like. I would have probably missed the joy of running like a 6 year old in the sprinkler because I would have been letting James play as I read a magazine or something. But instead I was given a gift. The gift of being able to play with me son in a way that most parents will never get to experience. I am thankful for that

This time Last year...

I made this post. I remember those feelings of fear. And look at James today. Today I watched him walked from a parking lot into the hospital to see our friends brand new baby sister. No wheelchair, no stroller. Just James walking. What will I say this time NEXT year? How will this new normal change us forever in the year to come.Josh and I are in the middle of making some very big decisions for our family. Your prayers are greatly appreciated. I find that is this is why I love blogging because my heart is right there staring at me on the computer screen. I can see how far we have come from this time LAST year......

~We are 21 days away from having out lives change forever. 21 days until I allow a neurosurgeon to open up my son's spine and cut nerves.....How do I wrap my head around this? We have had our big fundraiser and that helped keep my mind off the surgery but now all I have is time to keep me busy and it isn't my friend. I have struggled with doubt and confusion over this surgery. I felt so confident about our decision when the surgery we 6 months away, but now that it is a short 21 days away the fear and doubt are keeping me up at night.

Last night I woke up at 3am and was gripped with utter fear. My mind was an enemy that I could not get away from. Every time I put James to bed I think to myself " Enjoy this moment because I might not get anymore" I look at his little smile during the day and think " How will I ever breath again if I cant see that fact anymore"

 

I know that God is in control but my fear of loosing the 1 child God has allowed me to raise here on this earth is controlling me right now. I don't really know how to escape from its grasp. I have even thought about cancelling the surgery. I of course didn't but because my head knows this is the best thing for James' future. I just cant seem to control this fear and pure terror of loosing James. Right now I am listening to him in his room name everything he can see just to try and keep himself awake during nap time, and the sound of his voice is literally what I dreamt about before he was born.

I am also so afraid of seeing him hooked up to machines and tubes coming out of him. When we brought him home from the NICU I had hoped that I would never have to seen tubes and vents and IVs ever again but here we are. My head knows that it isn't like the first time but my heart worries. I worry about the moment I turn him over to the nurses and to go into the OR. Will he cry, be scared? Will my get physically ill like I do when I think about that moment.

What about when he wakes up? Will I be able to comfort him if he is in pain. How bad will his pain be and will they be able to manage it quickly. Oh so many thoughts are happening to me just 21 days out.

Will you please pray for this Mommy's heart, and that I will be able to be strong for James. I want ease his fears but I cant control my own. Please pray that God will show me His peace. And MOST importantly, please pray for Dr. Park. Pray that he is well and that in these next 21 days he will healthy and that all the nurses that will touch my son will be rested and well.~

Transitions in Life

This post is going to be like my Momma veggie soup. Its going to have a little bit of everything in it. We are home from Birmingham and James is doing GREAT! He has gone back to school and we have decided to not take his wheelchair to school with him. This was a really big decision because it means that James is responsible for all of his own movements. It also means that we put a LOT of trust in James teachers to give him the support and time that he needs to be successful and not frustrated with his new walking abilities. But I am proud to say he is doing GREAT! His teacher has told me that she let him leave a few minutes early ( with his Aid of course) and he walks where he needs to go. Of course what 3 year old wants to have to leave the playground before all of his other classmates!!?? So there are still a few age appropriate hills to climb. I know that will come naturally with time. This time last year we were just excited that he could even stand up in his walker for a few minutes. He has come so very far and it is thanks to these ladies pictured below helping me create goals for James at school! On the Right is James' Pre-K teacher Mrs. Trish and to the Left is the classroom Aid teacher Mrs. Dezzy

Sometime transitions are so very hard. We are praying very hard that James' teacher Mrs. Trish is able to come back to the Pre-K program next year. It all depends on the numbers of student in the program and if they allow the school to keep that teaching unit. I just cant say enough about house much we love Mrs. Trish. She has loved on James in a way that gave him appropriate boundaries and limits. She also let James be James. He has grown so much under her care. I thought we had everything worked out so that James would be able to stay in her class for another Pre-K year . But red tape and the bottom line of the school system are yet again affecting how my son develops. I have let my voice be known but I know that money is the bottom line and if the school system  ( as in the Central Office not the Local school office)  has to choose saving a few extra bucks over the good of students. I am sad to say this, but they will choose the bottom line. SURE they will have a wonderfully politically correct reason for it but they arent in the classroom and they dont see how it really affects the kids. But I am going to pray everyday that soft heart prevail and that kids are put before budgets! Will you please join me in this prayer request? James and many kids like him NEED more teachers like Mrs. Trish and we want to keep her as long as we can!

Our little family also experienced a loss this week. Our beautiful, sweet and beloved Lab names Sushi passed away during surgery to removed what we thought was an obstruction. It turned out to be that her intestines had twisted. I am told that this is something that can happen in large chested dogs like Labs. We we not expecting this because she was a young and healthy Lab. Sushi and I had a very special bond. She protected me from a stranger that was trying to rob our old house one night while I was alone, and she literally chased him down the road as he yelled for me to help! haha She was James wrestling partner as well as a place for James to rest his swollen legs at night

 She was Playful and Silly

 I could talk to her like a friend, and she always knew just how to make me feel better.

 I loved that dog more than I have ever loved an animal and if I am honest, I loved her more than I loved some people. She "got" me. She was my sense of security when Josh worked long hours. She and  I would snuggle up and watch Tv or she would just keep my feet warm.

 She celebrated with us in each of James milestones. She was always with us or at least in the background watching quietly.

She wasnt content to just wag her tail. She loved us so much she wagged her whole body. I miss her kind eyes and shiny coat so bad I can hardly stand it. I have always been an animal lover and gotten very close to my animals. Sushi was different because she was apart of MY family. My son loved her so much and so did my husband. We buried her at my mother's house just in case we move. Josh and I just stood at her grave and cried. We hadnt done that in a very long time and it was sort of good for us to get that out again. so I thank Sushi for that moment she gave us. Seeing our son grieve has been the most difficult part of it. He misses her very badly. He has asked me every night to please drive to heaven and bring Sushi home. Dont you wish it worked that way. I certainly dont know how the whole pets in heaven things works on a theological stand point, but I do believe that when God created dogs he knew the bond we would develop. So I like to think He will give us the joy of animals in heaven as well. I know that Sushi gave us a lot of joy here on earth and I am thankful for that. Sushi is already dearly missed but I know that I will remember her always and the unconditional love she gave to me while she was apart of our family. ~Thank you dear God for creating such beautiful animals that we can share this earth with.

We decided that we didnt want to wait to get another dog. James was very sad and honestly it helps me to have another furry face to love on too. So we adopted a 17 week old puppy from the humane society yesterday. She is a Lab and Border Collie mix.

We have named her "Manga" after the Japanese Black and White comic books. She is a sweet little puppy, a little shy but I am sure James will work that out of her. We havent had a puppy in such a long time. I had forgotten what that was like, but I am happy with her. I hope she fits into our family well. She is really starting to to work her way into my heart as well. She is very smart and we hope to be able to train her to help James like we did with Sushi. I know she will create her own special memories with our family over the years.

Happy Mother' day

No matter if your children and here on earth or waiting for you in heaven, or like me both. being a mother is a wonderful gift that I cherish. I wish all Mother's a peaceful and wonderful day. Happy Mother's day

Just 1 more..

Well tomorrow will be our last Long camp day and then Friday we have a 1 hour eval. After the eval, we are headed home! I am ready to get back to our routine and my comfy bed! As a side bar, if you ever think about buying a sleep number bed......quickly slap yourself in the face and be glad you didnt buy one!!

I am going to post the before and after Evals from this camp. Even before I see the "official" results I have been witness to them. James came into camp pretty much dragging his toes as he walked in his walker and his left foot was turning in very badly. After these intensive 3 weeks we can barely see the turning in at all. Now that doesnt mean the issue is gone for good. I am not that naive, but it DOES mean that the bone is still straight and with proper stretching we can get those muscle to do what they are supposed to do.

This time has also allowed me to do a little thinking about my own healthy and physical well being. I am asking James to do so much and I am asking very little of myself. I am of course talking about requiring my own self to have will power and take control of my own body. I have to do this. I have been walking James to PT instead of the car and that has felt great. Being that we are starting over since our Fridge and freezer had to be totally cleaned out, this is a great opportunity for our whole family to join James in his daily exercises. Josh and I have been talking about it and we really need to take the plunge and go all in. So when I get home on Friday I am joining the gym that is 5 min from my house.

There I said it!!! It is now out in the bloggy land and I hope that you will hold me accountable. In fact I am begging you to hold me accountable. I have had to start taking BP meds because I have let myself go! So these 3 weeks have been a game changer for our whole family

John 13:7- Tornado Outbreak

Jesus answered him, What I do thou knowest not now; but thou shalt understand hereafter. ~ John 13:7

 This week devastation struck my state. It came in the form of over 300 confirmed Tornado in our State of Alabama alone. Here in Alabama tornado are a part of life in. We usually have to duck for cover once or twice a season. This however was different. The outbreak was so wide all over the state. When you felt safe from one you another was right behind it bigger than the first. I was away from home with James here in Birmingham and the rest of my family were in different parts of the state.

I spent most of my day watching the weather. Starting at 5 am when the first tornado sirens went off. I grabbed James and ran down stairs. The storm went North of us but more to come. All day I watch tornado form and hit this state that I love. So many friends lost everything and I mean everything! The picture above is of a friend's home in Huntsville. It was a beautiful brick 2 story home in a neighborhood that as you can see is gone!

At around 5pm we watched live on TV a tornado form in Tuscaloosa. It ripped through the town and was headed for us. the Ronald McDonald house put all the residence in a central hallway. We sat a waited for it to hit. That is the worst part....just waiting for everything to break loose. We waited and I watched the live streaming of the tornado on my smart phone. The Weatherman kept yelling at us to take cover now! Already there!!! And then we heard the tell tell sound of the Tornado. It sounds like a train coming right at you. The building felt like it was breathing. I took James and pushed him under a desk and them laid on top of him. All I could think as  I watch my phone screen was " How am I going to hold on to him? How will we survive something that big?" so many more thoughts went through my head but Wheels on the Bus came out of my mouth. James and the other kids were so scared so I started singing.  What felt like and eternity was only a few minutes. When we were given the all clear to come out, we did. I expected to see damage, but we didnt. We learned that the tornado touched down 4 blocks from us and what we heard was a satellite tornado that never touched the ground in the downtown area. Thank you Jesus!

But as we were happy that we were safe, we quickly realize that many were not. Over 300 people so far have been confirmed dead. The hospital here has had a steady stream of ambulances coming in. They have refrigerator trucks lined outside the hospital because the morgues are so full. Children that were blown away from their mother's arms and were found have been given a number until their families are found. Many havent been claimed yet. A friend of a friend had just given birth 7 weeks ago and she was killed saving the life of her 7 weeks old son. Families without homes. Our entire county without power. Devastation everywhere. 

Please pray for my State and the many families that lost so much. My entire family is safe and our homes were spared.

This is what Hardwork looks like *warning video is hard to watch*

Effort only fully releases its reward after a person refuses to quit. ~Napoleon Hill

That quote is perfect for James. He is the hardest working kid
I know. In fact he is the hardest working human I know. I know adults that when things get tough they are gone. But not my James. Is has endured so much his short 3 years. I know what we have gone through in our journey doesn't compare to some families experiences or other blogs I read. We are blessed in so many ways with the abilities that James has and I am so very grateful. These kids are amazing!!

James impressed me today and also broke my heart in to a million pieces. PT started good. We had a few "3 year old moments" but nothing that everyone goes through. He was working hard and doing his stretches. communication is sometimes an issue for James. He knows what he wants to say but sometimes during PT when it is difficult or he is frustrated the words just don't come fast enough. What sometimes does come out is frustrated screams. But he always over comes it and we are working with him to be able to access the words he needs when he needs them. This is a video of some of James' beginning of PT. You can also see his little camp buddy working just as hard! ( I got permission from his mother to video him as well 0

 The determination in this kids is a sight to behold. Such and sight that it shames me in my own willingness to say something is just too hard. I wish that I have a fraction of James determination

But sometimes it breaks my heart. Sometimes I want to grab James up and run as fast and I can and as far as I can from what is hurting him. My Mommy heart wants to protect him from the pain that his body is creating. I want to FIX it for him. But I know that I cant. I have to allow him to work through the pain and frustration so that he can come out the other side an independent and functioning person. All I can do is give him the tools to succeed and be there to comfort and catch him when he falls. But also there to pick him back up again and offer the encouragement to try again.. As I was watching James struggle today God spoke to my heart. Isnt this exactly what God does for us. I am sure He wants to "fix" all of our troubles and spare us from the pain of this worlds as well. The love that I have for my son is only but a grain of sand compared to how God loves His children. How I grieve him when I struggle but He is always there to pick me back up and offer encouragement to keep trying again.

THAT is why I was lead to take this quick video of James while he was struggling. It is very hard to watch so just know that it will break your heart because it does mine. But I am happy to say that he finished his part and made it through to the other side and stood TOTALLY INDEPENDENT for 2 seconds! No walker, canes or helping hands. JUST James. James was very proud of himself when he reached his goal (the play kitchen) and told me over and over again that he made it.

I LOVE the number 5!

Yep! That is right 5 is my new favorite number. I like the way it sounds. I think it is beautiful. But my absolute favorite part about the number 5 is counting to its beautiful name as I watch the physical therapist take her protective hands off my sons canes. We all hold our breath and start to count the unassisted steps James is taking with his canes!!! I thought that when I said 1 my heart was going to burst out of my chest, but 5???  I was on cloud nine.

James gave a sheepish '" Whoa!" and proceeded to take step after beautiful step. Now for those of you with typically developing children may not realize what all it takes for a step with a cane. First you have to understand that James doesn't really always know where he is in space, so he is working on keeping his balance. Then he has to be able to shift his weight WHILE keeping his balance. After that he must move the left cane then his rightt foot and then switch feet. All of this at the same time AND keep his legs strong and upright. It is very difficult and something that you and I do as easy as breathing in and out. James has to think about every motion and plan it out. So 5 is WONDERFUL. And of course I forgot my phone and/or camera! But I am sort of glad because I really got to soak in the moment.

I know I was a silly person calling everyone to talk about it, and some were off to another topic before I finished my sentence hardly but in our life this was BIG! So I think I posted it everywhere I could and text everyone I could think of ! LOL

The best part about it is that this time last year we were one month away from James having the SDR surgery. I was scared to death and even thought about cancelling the surgery a few time. James couldn't sit up well by himself he could barely hold himself in his walker independently and  his little legs scissored so badly that he would just step on himself and never go anywhere.

Not today! Today almost 11 months post SDR James is going everywhere he needs to go and talking to his peers eye to eye.  Today was a good day!

I wonder?

Do you ever wonder if people listen to their own words that come out of their mouths? I sure do. I wonder frequently if they hear themselves and wish they could shove those words back inside. but are just too embarrassed to say "oops that didnt sound right". Maybe they realize, but figure they are out now so just go with it? Hummm???

 This really isnt directed at one particular person but instead a collage of several experiences I have had.  I find myself feeling embarrassed for the other person most of the time. I see that flash across their face when the wonder if the word "handicap" will offend me, Or as they reach a part of the sentence, and struggle with what word to use next to describe my son. I just stand there. Inside I want to share our whole life story. How James is a miracle even to be here at all. How we went through so many years of infertility treatments and about the children aches to hold but are waiting for us in heaven.  I know that will only make things worse because then they REALLY dont know what to say. So instead I just smile and usually nod as they label my son, ask if he is smart, or offer some advice about how their aunt twice removed had a "handicapped" child. *Sigh*

My favorite is when someone really wants to know what is "wrong" with James. Some come out and just ask that exact question, but most dance around the question in hopes that I will let it slip.  Other just stare. I have even had people tell me that James' condition is my fault because I must have not gotten good pre-natal care. If they only knew.

How to handle those looks or words even if well meaning? The quick answer is I dont know. God has some work to do with me in this area.  All I do know is that I pray for God to give me wisdom to use this journey He has set us on as a way to further his Kingdom. My fear is that the guilt Satan tries to tie me down  with is keeping me from seeing the openings to witness that God is giving me. I know that James has been given to Josh and I to raise for a reason. People are drawn to him where ever we go.  I watched James walk into church this morning and as I saw everyone staring at him in his walker I saw it from fresher eyes. The look of Joy they had to see this little guy work so hard to walk and  have such determination made me re evaluate my responses. So tonight my prayer is that tomorrow God will help me to be strong. To hold my tounge so that He can do work through me.

Not exactly an Easter post, I guess, but this is what is on my heart tonight. I am making more of an effort to get back to blogging my heart and not just updates and things I" think" people want to hear about.

Camp Snap shot of our Camp day * Picture Packed*

Thank you for everyone that made a comment to let me know you are out there. I really enjoy blogging about James and his journey post SDR and just our life frankly but figured that I if no one was reading it I would just go back to my diary or the personal family blog. BUT since there are those that do check and read my ramblings I will continue :-)

I especially love hearing that there are other Mom's of kiddos with CP. And for those of you considering the SDR please feel free to send me an email with any questions maryellen@lighthouselifeinpictures.com It was the BEST decision we ever made for James and we would do it all over again in a heartbeat!

Now on to bigger and better topics like WE CAME HOME....for the weekend! It was so good to see my house, bed, recliner, and dog! I missed that lab sooooo badly! Haven't seen hubby yet but he will top the list once I do :-) It also feels good to be in front of a computer instead of blogging on my phone in the RMHouse.

People have been asking about the Adeli suit and and the program that we are in, so I thought I would post some close up shots and talk a little bit about the program. Children's Hospital in Birmingham one of the very few places that are certified and trained to use the Adeli suit. I researched a few other programs but I liked Birmingham because they also incorporated los of other PT practices into the program and it is a very well rounded program . They use traditional PT with a little Conductive Education as well as the Adeli program. And I like that!  This picture below is James getting all suited up. The suit is very tight and gives a lot of sustained pressure which James doesn't always deal very with. You can see all the bungees that go every direction. They are specially placed just for James and his physical needs. For example James' left foot turns inward and so they place tighter  bungees on that leg to make his leg straight. The goals is to align the body perfectly and do repetitive PT to retrain the brain to the correct movements

 James is NOT a happy boy right here. The first 10 min in the suit for James is really rough. His PT tells me that kids react one way or the other. Either they love the pressure or they hate it. James hates it! I knew he would because he never likes harnesses and belts that are placed on him. To help him with that they use Vital Sounds integrated listening. You can see the headphones here. These are special modulated music CDs that provide a calming sensory input, and James responds well to it.

 See :-) This is after that first 10 mins when James is able to work thru the sensory issues that he has and focus on PT. Not sure if you can tell here but there are bungees at the ends of James toes that pull his heel cord these really made a big difference in his steps.

The other aspects of the camp are more traditional PT exercises just done in an intensive way. James has 3 solid hours of PT and 1 hour of OT everyday. The program is very intensive and by the end of the day James is exhausted. Here is a typical schedule of event for one day of camp

8:30-9:00-  Heat Pads, Stretching and Massage time

9:00- 10:00 - Strengthening and Core Activities and Big Ball Exercises

 10:00- 10:15 Snack
10:15- 11:15- Adeli Suit, Treadmill and Cage work or walking

11:15-11:30 Cool down and Walking to OT department
11:30- 12:30 OT Hour

12:30 End of Camp day!

Time to REST and gear up for the next day

Thinking about letting the Blog go??

I dont think there is anyone that reads this anymore? It seems that everyone is happy with the quick updates on James facebook page and dont really care to get involved in the details. So I am thinking about stopping this blog all together and going back to my personal family blog. I havent had anyone comment here in over a month.

BooBoos and Crashes

So far this Camp has had its share of  booboo's! The first day James fell off a bench and hit his lip on his walker. He was with the OT at that time. People just dont realize how quickly he can fall. James is really strong but when he is startled or feels unsteady and starts to fall....he is going down! His tone kicks in and everything is pulled in. You or I would put our hands down to protect ourselves from hitting out face but James can do that yet. His arms draw in and is not pretty! It was a really nasty busted lip too. It even made his nose bleed. But he was such a trooper. Once we got him an ice pack he was ok.

Day #2's fall still has me shaken up!! James was put into a mobile prone stander similar to this one

Except James' stander was a older model that does not have that larger Red bar holding it up. But instead a smaller bar. I now know why they have improved this model because yesterday the weld that was hold James up broke and everything cam crashing down with James strapped inside of it. It was a VERY scary moment for everyone. Especially James! All I could think was he had broken his back because of the way he was bent. But he was only in the heap of metal for a second because I reached down and started pulling him out before I could even think about what just happened. He has some bruises on his back as you can see  a little bit here

You can see his SDR surgery scar and that the bruising is mainly below that , thank goodness! But there is a larger bruise below his scar where the pad that held him in the stander was. I sent this and another picture to Dr. Park and they told me that as long as the swelling goes down, he his playing fine , that they arent worried. So I feel better about that. And he IS playing just fine seems ok. The only other side affect from the fall is that he is pretty scared today. He is afraid to be in his walker very much but I hope that will fade soon! We shall see when we go back tomorrow for Camp day #3. Let pray that all the booboos are OVER for the duration of camp!

May Camp Day #2 LOTS of Pictures

I just wanted to share a BIG thank you to North Park Baptist for this sweet goodie bag waiting for us when we arrived Sunday. It really made my day!

 Camp day #2!! James and Ms. Corinne looking at the schedule or events for today. James is like his Mommy. We like to know the plan before jumping into anything.

 Ok THIS is the one of the "cages" you can see all the bungee cords hanging from it. What they do here is James will stand in the middle and they will connect bungees to his Suit. This allows him to be supported and the PT 's hand freedom so work on positions. It also only takes some of the weight from James and makes him hold 90% of himself up

 James has been doing some timed walking. Today he had to do it on an incline. You can see he is getting a little help from Ms. Corrine but he did most of the distance by himself. His little legs were just shaking at the end of it

 James is with Ms. Patrice here. She is actually a retired PT that has come back to do the evaluations. And she is AWESOME!! Basically if you combine your perfect idea of a grandmother with an Awesome PT you get Patrice!! James loved her and did everything she asked without one complaint.

 At the Ronald McDonald house were we are staying a group from a local church came and gave us some dinner music. James loved the harp.....or maybe he just loved the young ladies playing the harp!

 James thought this was really fun. It is like a standing bike. He was giggling the whole time! He is actually working on reciprocal movement here but shhhhhh dont tell him that!

 James and Isaiah getting their muscles all warmed up as they watch Bob the Builder.

 The next 2 images are James and Isaiah playing a relay game with each other. James was really fast!

 He isnt falling here I promise! He is working on his lateral muscles by reach for the floor and then touching Ms. Corrine's head.

 And here is the Adeli Suit! Click HERE for all the technical info on the suit and what exactly it does. James just knows he is not a fan as you can see by his face. Poor guy :-( It took about 15 min to get him into the suit, but hopefully it wont be that long since all the bungees are in place now. It is REALLY tight which James doesn't like. We were calling it the Buzz Lightyear suit and after about 10 min James told us he hate Buzz!

 A close up of the suit and a bit of James sad face

 But not to fear we ended on a FUN note! James loved the Koala swing and his session with Ms. Kathryn the OT. She did lots of nice relaxing things with James.