The New Chapter Begins

David lies quietly on our Haven House bed, slowly breathing in and out as if he is contemplating the next step in his journey and as if he knows he must ration his strength. He looks so grown up and so handsome with his little pre-pubecent mustache and his newly short haircut. He looks like his daddy and I know his daddy has his back today.

As I watch him....I can't help but think of all the things this little man has been to me and others since even his conception. He was first and foremost....the baby we didn't know we could or would have. He came on the heels of a very sad miscarriage. We had no idea we would get pregnant again, but once we knew he was on his way....we were over the moon. Then he became the child we didn't know whether God would let us keep or not. So many months of up hill climbing only to be knocked down again and again. But he fought and he survived and more importantly......thrived! Then he was the one person that seemed to hold a grieving family together when his daddy died. He then became the little man who made my mother fight to live and to endure radiation and chemo. He was the one person who could make her smile and rally in those last months. Then he became one of my reasons for going on after Tim and Mom were gone. I knew I had to be there for my kids and most especially this special little gift God had bestowed upon me. Since....David has been many a bright spot in my days, he has been the source of much laughter and many many smiles. He has persevered and exceeded through all put in his path. He has made those whose lives he has touched better people and he has gained a fan club of hundreds. He is all these things and more which literally make him larger than life....and yet....here and now he looks so small and contemplative. He is now what he has always been. He is my baby.

I forced myself to sleep last night knowing that it might be my last good nights sleep in awhile. Though I awoke several times to check on David....I did sleep. In fact I was so tired that apparently I left our key in the door as I had a note shoved under the door telling me so this morning. Good thing I am in a relatively safe place! David seemed to sleep well and fell asleep quickly as he had a long and somewhat boring day yesterday with no naps to break up the monotony. Each time I would open my eyes during the night....I could hear the slow, steady and mostly reassuring sound of his breathing and I tried to relish his quite slumber as neither of us may have a complete and restful night for some time to come. 

I do not know if David understands what is about to happen. I think he knows things are going to change. I tried to talk to him last night and as I did....he began to pinch me (something he does when he gets frustrated or uncomfortable). It was almost as if he was trying to tell me...."I don't want or need details! I will just take it as it comes....like I always do!" I finally gave up the explanation and just resorted to tickling him and listening to him laugh. 

At 9 a.m. we will be shuttled to Shriners and there our journey will truly begin. I am ready and packed and as I looked in the mirror this morning I saw a tired and worn woman. It was as if I had aged years in the last few months. Was it a true picture of how I look or was it just my inner turmoil and worry manifesting itself in the mirror? I have no idea. I just know that no matter how I have tried to prepare myself for what is to come....I can't! I have no idea what his pain will be like or how he or I will handle the upcoming hours, days and weeks. I guess I am like David. Don't give me details. I will just take it as it comes!

I do know that even with David's issues.....we have been terribly blessed. Other than one shunt revision and his seizures, his health has been extraordinarily good. He hasn't had multiple surgeries and for the most part, his immune system is good enough that he doesn't catch everything that comes along. And we are blessed that this surgery is a life enhancing surgery which will hold new opportunities, possibilities and much more independence for him. I am excited and terrified all in the same breath. 

So today....right now....we wait. Soon our shuttle will be here and we will be on our way to a brand new chapter in the life of the Incredible Mr. David. Good thoughts are welcomed, prayers desired and I will let you all know when the surgery is over. Be sure and watch facebook for updates.

We Made It!!!!

We made it!!! I say that with exclamation points (!!!) because there was doubt that we would survive the flight. Okay....there was really no doubt....except in my mind.

Our flight was delayed a good hour or so yesterday due to the fact that Wichita was covered in heavy fog. I wondered in the morning as I was running my last minute errands and the visibility was zero..... if flying was even going to be possible. To be honest I had really thought very little about the flight up until yesterday morning. I of course intellectually knew that we would be flying a smaller plane....I just had no idea I would be flying in a tin bucket with wings and a motor. Worry and fear of the flight did not even enter my mind until I was talking to my mother in law as I was running my errands and she said "I hope you packed a parachute!" My body froze at those words. I knew she was kidding (sort of) but that was when the realization hit me that the flight might be as scary as the impending surgery. My stomach dropped. I tried to focus my mind elsewhere.

When we arrived at the small plane airport, David was enthralled. He loved looking out the big windows at the smaller planes being worked on and fueled. The "oooooo's" and "ahhhhhs" that he kept murmuring told of his wonder at such sights. I had loaded him down with Dramamine in the car so about 20 minutes into our airport wait......he was out snoring for all to hear. As our wait dragged on.....I was afraid that the meds would wear off before we even boarded the plane (and actually they did!)

Thiry (who took us to the airport) and I caught up on life as we waited for our plane. Eventually the fog turned into cloudy gray sky's. Suddenly a plane about the size of a flying tricycle landed and came rolling up to the door. I went into total panic as I saw the size. My bag would not even fit in that let alone people. Luckily a young man came bouncing off with a single bag. He was obviously pilot and passenger all in one. I breathed a sigh of relief knowing that was not our plane. We waited a few minutes more and then down the run way came our Wings of Hope plane. It was only slightly bigger than the one man tricycle...but some how the red cross on it invoked a little comfort. Off the plane and in the building came three gentlemen. One introduced himself as a doctor. As the plane refueled they talked amongst themselves and asked information on Yingling Airport where we were at. Apparently they usually fly into Jabara.

Once fueled we waked to the plane and inwardly I panicked. There were five small seats and a space about the size of a small hatch in a tiny compact car. We were suppose to fit all of us, a wheelchair, walker and bag in that tiny space. I just didn't see it happening. Somehow though we managed it all and soon we were all crowded into the plane with knees by our ears and ready to take off. They gave David and I headphones to block out the engine noise. David was not too excited to wear his but after taking them off he realized he didn't like the sound of the engine and put them right back on. At this point the Dramamine was but a memory to his system and he was fully awake as we took off down the run way. His eyes got big as we took to the sky and my  stomach did a 360 and then dropped. Once we hit our correct altitude the flight was fairly smooth although for the nervous plane traveler...I don't suggest flying in a plan where you can actually see the pilot and cockpit. I found myself watching carefully for gauges to start spinning out of control and nervous facial expressions from the pilots. Luckily neither ever happened.

The flight was about two and a half hours and David switched between dozing and looking out the window. All fear that the flight would mess with his shunt or his equilibrium was gone. He was loving every second of it. I tried to drift off but my head was practically on my knee and there was no comfortable spot so I just looked out the window. I thought of the Jason Aldeen song "Flyover States" and understood just how beautiful Kansas and Missouri were from the air. It was a patchwork of greens and browns dotted by cities and farms. I really loved it. Then we started flying over the Missouri River. It was amazing to see all the twists and turns as this massive body of water spread out in every direction. Occasionally you could see the white tail of a boat speeding through the water. It was fascinating and it also told me that we were getting close to our destination.

Suddenly the plane went up. My heart jumped and my stomach flipped. I immediately grabbed for the Dramamine. I was terrified that I was going to puke and THAT would have been horrible. I took two and looked back at David who was drifting into sleep. Obviously the altitude change hand not affected him in the least. We kept that altitude for a bit and my stomach quit rocking. Then the doctor next to me held up 10 fingers indicating that we should be landing in about 10 minutes. I was so ready, but I was not ready for what those ten minutes held. As we began our decent.....I could feel my stomach churning. I could no longer look out the window and the nice even flight suddenly began to feel like a roller coaster. I held the bar above my head and broke into a sweat. My head was spinning and I fluctuated between taking slow deep breathes and praying that we survived. I couldn't even look at David for fear if I opened my eyes I would throw up. It was the worst 10 minutes of the flight and then suddenly I felt the wheels touch down. The minute we hit ground my stomach started to return to normal. I couldn't wait for them to open the door so that I could feel fresh air. Standing on solid ground never felt so good before. Awaiting us was a bright red Shriners van. It was big and spacious and best of all.....no wings.

The van shuttled us to Haven House where patients and families of Shriner's Hospital stay. This place is wonderful and we have a huge room with two nice beds and large bathroom. Meals are served in a dining area and there is big gymnasium that David can roll his wheelchair all over and hoop and holler till his hearts content. The food was wonderful and we caught a little tv in the tv room and then we called it a night. It was a wonderful ending to a rather precarious day.

Today we will be shuttled to Shriners where David will have more x-rays and his blood will be typed and cross matched. We will also find out the exact time of tomorrows surgery. If I think too much about tomorrow....my stomach starts getting that plane descending feeling again, so I just won't.

Through the grace of God and some wonderful people.....we are here. We are exactly where we are suppose to be right now. I have absolutely no doubt about that. What tomorrow holds is tomorrows secret, but for today....we are on solid ground and we are going to enjoy our day.

And So it Begins..........

And so it begins.........

Today we fly out to St. Louis to begin a life changing adventure. It will be an adventure because quite honestly.....I have no idea what twists and turns this event is going to take. I am reassured that Davids surgery comes on the heels of Holy Week. Easter marks a new beginning and so does this surgery.

I should actually be running through my house picking it up and making sure everything is in order (which nothing in my house is even close to being in order)....but I have been running for weeks now, so instead I decided to blog and perhaps clear my mind a bit. We are leaving without having a hospital bed in place or home healthcare. I have been working on both of these for weeks now but have no definites as of yet. I am hoping that I can get these deals done while I am at Shriners.

My mind is a jumbled mess with all that is going on. I have tried to cram my life so full of busyness lately so that I really wouldn't have time to think about this whole thing. When I stop though....the thoughts and fears creep in. I am absolutely terrified of everything from the plane ride (never been in a small plane and I am not sure how David will do), to the surgery, to his pain and finally to my ability or lack there ofto give him everything he needs to get through all of this.

When we found out we would be having surgery in St. Louis I was really relieved. We have a lot of family there and I remember thinking that for once I would not be going through something with David alone. Last night though....I realized that even if every family member I have was there, I would still feel alone. As a parent it is just me and my child when it comes right down to it and no one else...no matter how hard they try can step in to ease what he and I are going through together. We both have our parts to play and no one can make it any easier or any less painful for either of us. It is a hard road but one that I know must be traveled to get to where we need to be.

Aside from the fear....I feel so extremely blessed. The generosity people have shown us from the financial to the spiritual has been amazing. People stepped up and bought cheesecakes like crazy helping me to put aside money so that I can see to all of Davids needs following surgery (some of which are not covered by insurance). Many have offered up prayers, Masses and Holy Hours for David and now people are making sure that after we come home there will be meals and physical help when home healthcare is not available. Even more astonishing is that some of these "gifts" are coming from complete strangers or people I only know through facebook. It has been an amazing (yes I use that word a lot when referring to these last few months) lesson in the generosity of the human spirit. We are truly blessed and I can never thank those who have helped us get to here....enough. All I can say is that I promise whenever given the chance....that I will pay it forward to the best of my ability!

It seems so strange to finally be at this point in the journey. In such a short time we have gone from not knowing anything about Shriners, to waiting on an appointment and fearing we couldn't be seen because of seizures, to getting a surgery date and now finally we are here. Our life has changed so dramatically in the first quarter of this year and as far as I can tell.....it has all been for the good. I am not unrealistic though....I know that the tough part of the journey still lies ahead and that the next two weeks will likely be the part that holds the most trying and difficult leg of the journey for David and for myself (no mother deals well with seeing their child in pain).

So we are as prepared as we are going to be. David has his new "sheared" haircut, we are packed and we are waiting for our ride to the airport. I keep telling myself that the minute the surgery is over....we are on our way to recovery and David is on his way to a new more independent and mobile life. I believe this and I have complete faith that God would not have brought us to this point without something very special in mind for my little man. I also know that from the minute Shriners was mentioned to me by Jill Cook....the situation was never in my hands. From that point on...it has always been in Gods hands...and you know it has done quite well there, so I think that is exactly where I will leave it!

I will try to keep up this blog during our stay in St. Louis and even after. Who knows someone else out there may eventually need the information and lessons David's journey holds. I also know that there are many who want to hear how he is doing and as I said....I will try to keep this and facebook updated.

Well....it is time to go. I am stuffing my fear and anxiety and putting it all in Gods hands. If you pray why worry.....and if you worry why pray? And off we go.....

The Journey Continues.....

Well...the wheels are in motion! So much has happened in the last two weeks.....I can't even fathom it all. I was laid off and I went into full tilt baking. I started Cheesecakes for David and the out pouring of support and generosity has been amazing. I have been knee deep in cream cheese ever since....and I love it!

We are just six weeks and three days from the big surgery day and it seems as if time is racing at break neck speed. There is still so much that I have to do to prepare, but it all does appear to be falling into place. People have been very kind giving me pointers and tips for making David's recovery an easier one.

It appears also that I had my surgery names confused. After talking to Shriners the other day and asking them more specifics (now that I know more of what to ask) they told me that David will be having the following: Bilateral Verus Rotational Osteotomie, Left Bega Procedure, Bilateral Adductor Tentotomy, and 8 plates put around his knees. It sounds painful just looking at the words. However....the words mean only one thing to me.....David having a chance at independence.

As I was saying...people are giving me great advice about what to expect after surgery and also tips that will make surgery and post surgery easier on David. One tip which I thought was really a great idea was to buzz Davids hair as short as possible. When he is in his cast and in pain...the last thing he will want is his head washed and the logistics of being able to do it even on a good day could cause water to drip into his casts....making it a bad experience all the way around. Having a buzz cut though....all I will have to do is take a wash cloth and go over his hair. How easy will that be? I have also been told that distractions are a MUST! Anything that I can do to keep his mind focused on something other than his pain, his casts and his inability to move around I need to do. I am going for Spongebob! Spongebob gives David great joy and I plan on taking his SB movies up when he has surgery and then I am going to deck out his recovery room at home in Spongebob. By the time this is over.....maybe even David will be Spongebobed out!

I have also been doing a lot of communicating with Shriners. Again I have to say....I have never had such an experience with a health care provider...and trust me....I have been involved with many health care providers. They have called me several times just checking in and making sure we are prepared and I have had to call them several times to ask questions. Always I am given complete and personable attention and they don't get off the phone until all my questions are answered. It is amazing. No....Shriners is amazing!!!!

After getting home from Shriners and thinking about Davids surgery a bit....I got to worrying about Davids trip home after surgery. Eight hours is a very long time to be in the car when you are in pain. I was really afraid that it would be too much for him. Then a friend told me that Shriners could fly patients in and out of St. Louis if there was a need. I immediately got on the phone and started finding out if this were possible and blessedly....it is! It looks like they will be flying us to St. Louis the day before his surgery and flying us home afterwords. When they fly us back....he will have a nurse flying with us. My prayers were answered. Thank you again Shriners.

Another issue I was facing was getting a hospital bed for his recovery. I had been told by someone who had been through this that a hospital bed was another MUST! I have always said I have the worlds best facebook friends and I stand by that. One of my friends asked me to call him. He himself has had health issues and he had a contact with Hil Rom who makes hospital beds. He called his contact who gave him the name of another contact. He called her and told her Davids story and she said she could help and to have me call her. I did and she said that David would have a hospital bed. Again...complete relief and Roy, I hope you know how much that meant to us.

I am working with Rainbows in hopes that we can get some kind of home healthcare after David comes home. I have been told that anything I do with David from changing him to moving him so that he doesn't get bed sores, will be a two person job. This means I will need help. Rainbows and Shriners has both told me that home health care will be limited to just a few hours (maybe 4-6) per week. That is all the insurance will cover. I am thinking this is going to mean I am going to have to bulk up a bit in the next 6 weeks in order to be able to do some of this on my own. This right here is a bit daunting....but I am sure we will find a way.

I have talked to a physical therapist who I think might be willing to work with David along with a message therapist who will work with him after his casts come off. Apparently charlie horses are the norm after the casts come off and they can come and go for several weeks.

So as you can see....there is much to do and much to get accomplished in the next few weeks. The bottom line is....if I was still working....I never would be able to get all of this done so I guess losing my job was a blessing. And as they say....when God closes a door...He opens a window! Well He appears to have opened a huge window for us and I am more grateful than I have ever been.

The journey continues and I hope to be able to be a little more faithful with my posts. We just ask for continued good thoughts and prayers. Thank you all!

The Decision is....David Wants to Walk!

Well....it has been a little over a week since our visit to Shriners and if you read my last post you know that I was on massive overload after our visit. It was a lot of information to process when the reality was that I thought they would say they were going to cast him. I was going on the information that I had been given from two orthopedic doctors in Wichita for the last eleven years. All I have heard is David's legs are doing good and he just needs more Physical Therapy (PT). As a mom....who sees David on a daily basis....I could see the gradual progression of his knees turning in and his hips being thrown to the side each time he walked. I felt as if there was more going on than I was being told....BUT when you ask explicitly over and over again...professionals who are suppose to know what they are talking about and have your childs best interest at heart, you want to believe what you hear. I even asked one ortho when David was about six, if surgery was possible. I was told that surgery was a no-no (his words) as the surgery would be too difficult on him and there were no guarantees that it would work. Now I hear that by all rights David should have had this surgery when he was about four. I am to say the least....a bit frustrated!

After the initial shock wore off of what I was told at Shriner's, my mind was for the most part already made up. My whole goal of going to Shriner's was to give David his best opportunity to walk or at the very least be the most independent he could be. If the surgery is necessary to achieve these goals...then we will do it. First I wanted to speak to some people who had already gone through it and then I wanted to talk to his pediatrician and his neurologist. I figured I had some time since they had not as yet set a surgery date. Before I was even home....after posting my blog and also posting on facebook....I had numerous people start contacting me about their experience with this surgery and Shriner's in general. Apparently everyone on the planet knew about Shriners but me. How had I lived all these years and only thought Shriner's had circuses and marched in parades? How had I not known about their work with kids like David and that David should have been there long ago? I was flabbergasted!

The people who contacted me were all familiar with this surgery and either their children or grand children had had it. All let me know that while the surgery was painful and the recovery was no picnic either.....that the outcome would be worth it all. I was also given many hints and ideas how to make the recovery easier on all of us and how to make Davids pain managable. I was overwhelmed and so grateful for the many responses. These kinds of things are always so much easier when you have someone to talk to who has been there and come out the other side still in tact. After gathering this info I immediately put a call into both the pediatrician and the neurologist. On telling them about our visit and the proposed surgery....both felt that it would be beneficial and that David was more than capable of having the surgery. The pediatrician even took it one step further and said: "If Shriner's thinks David needs the surgery and will benefit from it....then do it. They would not propose the surgery if they were not 100% sure that this was in David's best interest." With that information....the decision was solidified in my mind. After all....David wants to walk and I will move heaven and earth to help him achieve that goal!

Monday I was called by Shriner's and told David has a date. He will be having surgery on April 11th. Part of me is very excited as I see a new chapter in David's life about to unfold and it appears that there is no end to the possibilities in store for my child. Part of me though...is scared. I have been told that this surgery is extremely painful and while most of the patients are in and out of Shriner's post surgery within 24 hours....David will likely be there 3-5 days mostly I think....to ensure his pain is under control. He will be in a horseshoe type cast that will encompass both legs and from what I understand...stablizing the hips will be a necessity. He will have to have a completely different wheelchair so that he can recline a bit and so that his legs will be supported. My biggest worry now is getting him from St. Louis to home. Eight hours in a bumpy car while you are in pain is no fun. It is times like this it would be nice to be rich and be able to charter a plane. Unfortunately.....a van ride with lots of stops is the best I can do.

Once home....David's world will be completely different. Currently David sleeps upstairs and manages the stairs like a pro...on his knees. His upstairs room will be off limits for many months to come, so we will move his room downstairs. I have been told that a regular bed is neither easy to manage nor comfortable, so I am looking to rent a hospital bed that will support both his upper and lower body. I am also looking for one of those blow up mattresses like an Aero bed as I will be sleeping in his room until he is mobile again. I have also been told that I HAVE to have help as I will not be able to take care of David alone (especially when Z is in school) without possibly hurting him. Everything from diaper changes to adjusting him so he doesn't get bed sores is at least a two person job.

While all of this is somewhat daunting to think about....the thing that frightens me the most is David's pain. David has an extreme threshold for pain. His only reaction to pain is often hitting, pinching or biting. However....if you hold his hands.....he  just gets stone faced and you have no idea what he is really feeling. I recently saw him catheterized for a urine sample (catheters hurt) and he didn't budge. This begged the question...if David is weak after surgery...I mean too weak to fight....I may not know his pain levels. I do not want David to suffer unnecessarily so I have been asking doctors and researching how to tell if someone is in pain when they aren't letting you know. The best I can tell is to just keep an eye on their blood pressure and heart rate. Yay!!! I get to go back to watching monitors again!!!! Hopefully though...by the time we leave the hospital, I will be able to tell just by looking at him if he is in pain. Or who knows.....he may just surprise me and scream like a banshee when he is in pain. Only time will tell.

There is so much coming up in 2012 that I never expected. I am hoping that it turns out to be a miraculous year for David. Before the surgery, we have to go back to St. Louis in March to see the spine doctor. This could be another surgery somewhere down the road, but for now we are taking one step at a time. All I know for sure is.....by the time all is said and done, I will know the way to St. Louis very well.

I want to publicly thank Shriner's Hospital and their staff in St. Louis for their kindness and their professionalism on our visit. I want to thank all who have contacted me to share their stories of Shriner's and their suggestions to make the process much easier for David. Finally....I want to thank Jill Cook for telling her dad (who is a Shriner at the Midian Shrine in Wichita) about David,  Jack Broyles (Jill's dad) for getting me the information and the request for Shriner's and Linda Broyles (Jack's wife and Jill's mom) for putting me in contact with people who had already experienced Shriner's. Without all these people.....David would not be on the road to a new life. I thank you all from the bottom of my heart!

The Questions and the Answers

I think my brain is on complete overload. I knew that going to Shriners Hospital would be big...but I had no idea how big or how overwhelming. If you haven't been there....then you can't comprehend the enormity of what goes on behind those humble doors or what they accomplish on a daily basis. When you approach the hospital it is neither big nor is it fancy. It modestly sits off a busy road in St. Louis. When you walk through the doors it is clean but certainly not ostentatious. You are directed into the out patient clinic where you are greeted by friendly and accommodating staff. We arrived about an hour early (not knowing for sure how traffic would be) so we were told we could have breakfast in the cafeteria. Again...nothing fancy and yet very reasonable prices and wonderful food. Once full it was time for our appointment. After a quick check in we waited about five minutes and then were called back. Once back in the clinic.....it was non stop.

David was immediately seen by a physical therapist(PT) and then an orthopedic doctor. They looked at his legs without his AFO's (braces) and watched him walk with his walker. He took off at warp speed despite the twisting of his hips and the turning of his feet and knees. We were then sent back for x-rays. They took spine x-rays and hip x-rays along with leg, knee and foot x-rays. Lucky for everyone involved David was in a cooperative mood and the x-rays went smoothly and all the techs thought David was just the cats pajamas. He saved his grumpier side for the PT.

Once back in our room David was also visited by the occupational therapist (OT) who was very pleased with his upper body strength and hand and arm mobility. She gave him a few exercises to help his dexterity a bit but overall was pleased with what she saw. Before she was even finished, the PT and the ortho doctor were back. They took me into the hall and showed me his x-rays and what they felt were his major issues and what needed to be addressed. Their main concern was his hips. Our hip joints are a ball and socket set up. The ball of the joint should fit into a secure cup like bone. Davids bone that is suppose to be cup like is actually flat and straight causing his hips to turn outward and causing awkwardness with his walking. If left untreated he will continue to become weaker in his walking and he will eventually develop so much pain he can't walk or even sit. So they want to cut into his bone thus causing it to turn in instead of out. The best mental picture I could get was if you were sewing a curve and wanted your material to curve properly then you would have to snip out pieces of material to get the desired curve. Apparently this is along the lines of what they will be doing to Davids hip bones. At the same time they will be twisting the leg bone to straighten the knees and give him full extension of his legs. This all sounded wonderful and I was excited until I asked the all important question: Will David be able to walk without a walker? I was met with at very decisive and definite...NO! I felt gut punched when I heard such a definite answer, but it was followed up with a: "He will however be able to walk better with his walker and he will not end up having future hip pain." Sigh...in this game, you take what you can get.

On asking more questions I found that the surgery would be a 4-5 hour surgery as they would do it all in one fell swoop. While most patients are in and out in a 24 hour period....David's stay is expected to be 3-5 days and will entail issues we have never had before. David has had surgeries but never any with lasting effects and residual pain. Most kids Davids age will let you know they are in pain and pretty much what level their pain is. With David it is just not that easy. He has an incredibly high threshold of pain and being non-verbal....it will be difficult for him to let us know how bad the pain is. Getting him the proper pain management could be tricky and they have let me know there will be a lot of pain. Under any circumstances I would have stayed by his side 24/7 while he was in the hospital, but with his situation the way it is....it will be even more imperative that I do.

Once surgery is complete he will be cast in a dual leg cast with a pillow between his legs to help his legs stay separated. This will mean a new wheel chair to accommodate his casts. The wheelchair must have adjustable support for his legs and recline. Also traveling the 8 hours back home could have its challenges. They said his recovery in the casts will take about 8 weeks. After that intensive PT will be required. It will be much more than the school setting will be able to provide so we will likely be making trips into Wichita for high levels of PT. There will also be numerous follow up trips to Shriners and we were advised that it would likely be a year before he was even back to baseline. By the time the consultation was over....my head was swimming. Trying to figure out time off from a job that I can't afford to take time off from, trying to figure out school, PT and working life around all of this almost gave me an anxiety attack. I was quite nearly speechless and you all know THAT never happens.

On top of all of the hip, knee, leg issues he also is developing a spine issue. The ortho wants David to see a spine specialist but the first available wasn't until mid March so we are already scheduled to come back then. I took a deep breath and told them to go ahead and schedule him for surgery. As their schedule is now.....they are booking past March so they will be calling me with an official date soon.

When I walked out I felt deflated and ecstatic all at the same time. I so wanted to hear that there was a possibility that David could beat the odds and eventually walk on his own. After all...he had already beat so many other odds, but the definitive NO! crushed me. I almost cried right there. Instead my plan once again turned into Gods plan and David and I are just along for the ride. I am scared beyond belief of the surgery and what the next few months to a year might hold. Today I even questioned if I would be capable of making it all work so that this surgery would be a success and all the pieces would fit together. I still am not sure, but I do know that this surgery is a necessity and Shriners was put into our path for a reason. I just have to have faith.

Tonight I am a bit of an emotional mess. No I am not crying....I am just mentally shot. I know I need to get from point A to point Z, but I have absolutely no idea of how I am suppose to make all the other letters fall in line. I am sure there is an answer and I hope that will a little rest that answer will come to me. It has been an amazing experience and I do feel that David will be in the best hands possible. We have been put on this path for a reason so I guess we will just have to see where it leads us.

Hope for a Shriners Hospital Miracle

Thought I would give Mr. David some love today. I really need to post here more simply because there is so much to say. So much in fact that sometimes it is overwhelming. David so far has had a good school year. He started the year having dental surgery but it only kept him down for a day. Other than a day or two and some doctors appointments, David has been able to stay in school. His daily attendance helps him to progress and gives him stability and routine. He likes school even though he tends to rebel from time to time.

David just had his baclofen pump checked a week ago. His bp is a pump inserted into his stomach and wires or tubes that attach to his spine. Every six months baclofen (a muscle relaxant) is injected into the pump and the pump in turn distributes the med to his lower extremities on a schedule at the exact time and the exact amount every day. This pump doesn't work for everyone....but for David, it has helped to loosen his leg muscles immensely. Sadly this all would work for David much more efficiently if he didn't have a few strikes against him.

His first strike is that finding and keeping a good physical therapist (pt), one that has some experience, doesn't just want to put him in a stander and call it good and one who has the vision to see Davids potential and not just the here and now are hard to come by. Second....because of his seizures he is on a three time per day cocktail of meds and some of them come with less than fun side effects. The newest med they have put him on is Depacoat. By new I mean in the last 6-10 months. The Depacoat has definitely helped to put his seizures in check but the major side effect is aggression. Most days the aggression is light to moderate with some pinching and hair pulling, but some days we have full fledged tantrums with biting and crying. The school paras have learned David's behaviors and handle him with relative ease as we do at home, but when you combine the aggression with trying to stretch him (something he hates on his best days) then it makes for some difficult pt. And because of lack luster past Pt's who didn't "make" him walk with his walker and feel the need for stretching....David's mobility is nowhere close to where it should be. The fact that David is now weighing in the 70's does not make transitioning him and moving him easy on anyone.

As I watched David exceed in every other avenue but mobility I was starting to feel a bit of desperation feeling that he was not being helped in the manner he needs to be. As always seems to happen....God gives us what we need when we need it most. He put a new friend in my life.....whose father was a Shriner. Now of course I have heard of Shriners before. I mean I have been to parades....duh! But never had I really known what Shriners do. Jill gave me a run down and told me that she had spoken with her father and they would like to sponsor David to go to Shriners Hospital in St. Louis. I was excited to the point of being sick. So we got the paperwork, got it filled out and we were underway. The road was not particularly quick as I started the proceedings last spring.....and David's seizures almost made him ineligible to go to St. Louis, which would have meant starting from scratch to seek acceptance at another Shriners hospital, but low and behold.....we got a date.

I was informed that in late January, David will be seen at Shriners. What does this mean? This means David will be seen at the hospital by some of the finest orthopedic doctors in the country and his case will be reviewed by a team of doctors and therapists to see what direction needs to be taken to give him the best chance to walk. They will decide if assistive equipment is needed, if he needs surgery, braces or all the above. The best part is all of this is taken care of financially through the Shriners. This includes our travel expenses and lodging if needed. Thankfully we won't be needing lodging as we have family there we will be staying with. It is a blessing I was not expecting this time last year. Even if this means we will be trekking to St. Louis on a regular basis for awhile....every mile will be worth it if it means David can be mobily self sufficient. That and my family will no longer be able to say...we never visit.

David's world is one of walkers and wheelchairs and meds which make him mad. Daily he fights to communicate in a place where words are difficult for him and yet he knows what he wants and means. Despite all of this....David is basically a very happy kid who rolls with the punches and takes things as they come....both the good and the bad. I am hoping that this trip to Shriners may end up being a whole lot of prayers answered at once and a new path to a more self-sufficient life for David.

One of my greatest dreams would be to see David run and play with other kids. While I know the likelihood of that dream coming true is slim to none, I would settle for David being able to walk and I know if that day ever comes....there won't be enough Kleenex made for the tears of joy I will shed. For now though...I ask for prayers and good thoughts that come January....my little guy....The Incredible Mr. David....gets a great big Shriners Hospital miracle.