The Next Leg of Our Journey

I have come to the conclusion that someone truly needs to write a handbook on how parents deal with kids with cerebral palsy and other chronic conditions. After 13 years of questioning, learning about and fighting the system, I have learned that there are few (even those who are suppose to know) that will willingly direct us ignorant parents in the proper directions. After all these years, only now am I realizing just how mislead I have been.

Please don't think that I am feeling sorry for myself or David because I am not. There are many out there dealing with things far more daunting and life threatening than we are, but I am FRUSTRATED! Notice the capitalization? In the cyber world.....all caps mean that things just got REAL serious!

If you have been reading this particular blog.....then you know our back story, so I won't waste any time going back over the past other than to say that years ago we should have been told that David needed surgery and then all of this would have been behind us and he would have had years of physical therapy (PT) behind him and possibly have been a much more independent young man and not chained to a wheel chair. Instead we were given different versions of the same answer by different orthopedists through the years....all insisting that surgery was not the way to go.

It was not until we found out about and went to Shriners Hospital in St. Louis a couple of years ago that we finally learned from the REAL experts that surgery was not only an option but necessary for Davids future quality of life and......that he should have had the surgery years earlier. FRUSTRATION!!!! As you may remember David had this necessary surgery in April of 2012. Prior to surgery his hips and knees turned in and his muscles were very tight even with a Baclofen pump releasing constant muscle relaxants. After his surgery his hips turned out and spread along with his knees. His muscle tone became much better and he could move in ways that he had never been able to before.

A year and half out from surgery the pro's of the procedure are that he has more muscle movement, the cons though are that he cannot walk because his hips have turned out too much thus he is almost hyper bow legged with his feet crossing thus making it impossible for him to stand or walk even with his walker. It has also made it very difficult for him to transition himself from floor to wheelchair or wheelchair to any place else. The fact that he is now 4'8" and weighs nearly 80 lbs does not help any of his struggles.

Yesterday we made a 1,000 mile round trip dash back to Shriners to see a new ortho as his old one is no longer there. His new doctor is the head of Orthopedics at Shriners. This also gave us a new care coordinator and a new PT. This new PT did not seem to like what she was seeing from the get go...especially not being 18 months post surgery. She asked a lot of questions and did a lot of checking which David tolerated to a point. I asked her a lot of questions which she then answered to a point but hesitated with REAL answers until the doctor came in. He was also seen by a thorough young resident prior to the doctor who also asked a lot of questions and answered mine.....to a point. I was pretty impressed though that this  new team knew a great deal about David and were very up-to-date on his history. Someone was actually reading his chart!!!!! 

When the doctor came in he showed me Davids new x-rays. His spine has not curved any further.....that was the good news. The not so good news is that there is a new surgery in his future and it is not the simple little go in and take out the metal plates and screws that were put in 18 months ago and replate his right hip surgery that we had been told by his old doctor to expect.  No. The new surgery will be nearly the same as his last one because now his hips have been rotated out too far, so they now need to go back in and rotate them back in to some degree. This means more cutting of bone and muscle, another 6-8 hour surgery and another long recovery. I was nearly nauseous as he told me the plan. He also told me that this was Davids best chance of ever being able to stand on his own. Walking could be something else entirely as David has lost so much muscle tone from not being able to use his legs properly these last 18 months. After surgery and recovery.....he will then have to have EXTREME PT to regain as much muscle tone as possible. I truly wanted to cry.

Eighteen months ago David suffered through surgery, almost dying and a painful recovery only to be wheelchair bound. NOW he has to go through a similar surgery (hopefully sans the near death experience) another painful recovery and then we still don't know that he will be able to walk because of the loss of his muscle tone due to the first surgery. ARRRGGGGGHHHHHHHH!

Here's the deal....I am not in any manner mad at Shriners. I still know in my heart this is his best chance for a pain free future and the possibility of walking. I am however MAD AS HELL at my local ortho's who steered me away from surgery when he was young and should have had it. His life could have been completely different by now. Were they scared to do the surgery, too lazy or just too under educated to know how important this would be for David's life? I will never know the answers to this. Now though, I am stuck in OBAMACARE HELL and I have no idea what will even be covered in this new journey we are on. It doesn't matter though. What does matter is that David has all the tools he needs to have the best most independent life possible. So we wait to find out when his surgery will be.

The other good thing is that Shriner's is being extremely pro-active. Due to the fact that David aspirated last time and ended up at St. Louis Children's post surgery.....this time they are contemplating doing the surgery itself at St. Louis Children's to cut any risk to David. Another reason I know that Shriners has David's back.

As I was driving home yesterday and trying to process all of  this, I couldn't help but think about this 13 year journey we had been on. It has been a lot of no information, misinformation and frustration. It is hard to know all the missed opportunities for David just because we never knew they were there. When you have a special needs child....they don't come with instructions or directions that lead you to help resources. If you aren't vigilant as a parent and don't fight constantly for them......the system allows them to fall through the cracks. Someone truly needs to educate special needs parents so that they know how to get the best for their kids. If it hadn't been just talking to the right person at the right time.....I might never have known about Shriners and I cringe to think where we might be today. Perhaps when this next surgery is over and David is walking.....trust me......he WILL walk if I have anything to say about it, then I will work to start educating parents. I don't want there to be any missed chances for other kids like David and trust me......there WON'T BE if I have anything to say about it!

Prayers please as we continue on to the next  leg of our journey!

Another Mad Dash

Well...we made another mad dash to Shriners last week. When we were there in April they fit him for new AFO's (leg braces). The ones he had been wearing had been fitted right after his surgery last year and his legs and feet have grown a lot since then. In April they had widened them as much as they could so they would be usable until his new ones came in, but bottom line....they were just no longer a good fit. 

I think I can honestly say that I have this trip down to an art. The long part of the trip always "seems" to be the going, so the fact that we stop in Columbia to spend the night cuts the long part down exponentially. Friday morning we got up at 4:30 a.m. in order to be on the road by 5 a.m. as his appointment was at 8 a.m. You would think by now that I know that in early morning traffic (which there is barely any) that at most the trip between Columbia and St. Louis only takes two hours, so as you might have guessed...we got there early (like an hour early). The clinic had not even opened yet but lucky for us....the cafeteria had, so the boys and I enjoyed some of the Shriners Hospital cafeteria food. I have to say that as hospitals go, their cafeteria is really very good and not real expensive. The boys filled up on biscuits and gravy, eggs, bacon and fruit and I just drank my coffee.

Once breakfast was completed....we found that the clinic had just opened and we were the second ones in line. We headed back to the "shop" were all the orthotic equipment is fitted and made and we were the first ones there. Davids new AFO's were ready to go and the young woman working back there checked to see if there might be any places they could rub his legs. After a thorough once over...she also gave David a new pair of tennis shoes. Shriners has the best shoes for kids with braces as they fit easily over the foot part of the brace. Most off the shelf shoes don't work so easily. So while I had her there I also asked about some new stabilizing braces for him. The ones he had were given to us after his surgery so that they would help to straighten out his legs at night. We now use them to help keep his legs straight while he is in his stander. BONUS! They gave us new stabilizers. With all of this we were in and out in about 45 minutes and back on the road. It was a very short visit for an 800 mile round trip.....but worth every mile in our journey to get David walking and independent.

The trip home always seems to fly by and other than a gas/bathroom stop...we pretty much don't stop until we hit our driveway. Someone asked me what we do on such long car rides and how well does David handle them. The answer is...David does wonderfully. He seems to love taking trips and he usually never sleeps on them. This trip however.....he took several catnaps. I think his teen years are beginning to catch up with him. We do a lot of music listening when we travel. We all love music and we sing, listen and laugh a lot. It makes the trips go much faster and it keeps us all entertained!

So for now....we wait. David continues with daily stander therapy and the new equipment will help a lot. We are hoping that the next few weeks hold a growth spurt so that we can get surgery over with before school starts, but if I have learned nothing in this journey...it is that my plans and God's are often two different things. So if there is no growth spurt, then we will not be heading down I-70 to St. Louis again until October.

As a whole...David is doing very well. He is handsome, smart and even starting to talk a little more. He is an amazing kid with an amazing future and I think I am a very lucky mom!

And the Story Continues to Unfold

And we are back! Did you even know we left? Yeah...we are stealthy like that. Actually it was a quick trip made in less than thirty hours to Shriners St. Louis and back. As I drove into the driveway at about 10:45 last night....I was thankful for many reasons but none so much as the fact that God had taken this trip (one "I" usually try to plan to the second) and He took over the planning. With rain and storms, time constraints and a special needs kid in tow.....I have to admit, His plan was much better than mine.

It had been  October since David was last at Shriners. If you remember the last trip I was almost sick with fear that I was going to hear that I was failing my child and that I wasn't doing the right things to get him where he needed to be. Luckily I was just paranoid and Dr. Keeler talked me off the ledge. This time....after several reschedulings some on their part a couple on mine......I wasn't nearly as nervous, but I was expecting different things than I heard.

For anyone who has never been to Shriners....when they are dealing with your child, their emphasis is on what they see as the best way to get your child where he/she needs to be....whether this means walking, sitting, standing, etc. With kids like David....the route from A to Z is extensive and full of information. Lots and lots of information. It can be tremendously overwhelming at times. No matter how hard you listen or even if you take notes.....you simply can never get all the information in one visit. Your mind can only process so much and when the info is about your child and you are dealing with unfamiliar treatments, surgeries and terminology.....you can leave a visit feeling as if you have been hit by a semi and walked away. Add to that a lengthy drive home and it can really be exhaustive.

After our first visit there this is how I felt. Processing all the information was almost impossible, so I picked out what I felt was the REALLY important stuff and focused on that. Apparently I set a precedent and that is how I do it every time now. I guess it is my way of keeping sane through all of this. At any rate now, each new visit becomes like a new chapter or unfolding of new (sometimes reiterated) information. It is almost as if I am processing the information as I need it. At least that is how I feel.

So David is just barely over a year out from his surgery. A year ago....this point in time was targeted as a milestone. Dr. K felt that most of his pre-surgery movement and ability would be back by now and that we would be looking to move onto step two which will be the next surgery to remove the plates that were originally placed. In my opinion a lot of his pre-surgery ability is back, but not all. In the last months he has started crawling and trying to pull up on stuff, but his efforts to stand are in vain as his feet won't cooperate. He has gone from being very tight with hips rotated inward before surgery....to much much looser with hips rotated out (unless I have that backwards...but you get the drift. We are opposite now). His lower legs and feet now tend to hang and cross. Also...the one foot that I have worried about since surgery that seemed to be just flopping...still seems to flop. His feet frustrate him to the point that he refuses to even try to walk with his walker anymore. That frustration also resulted in the one meltdown David had yesterday. If anyone thinks David does not understand things.....being in that room yesterday would have shut that theory down completely. The physical therapist (PT) was talking to me and she wanted me to put David on his walker so she could see what the walker issues were. She said "walker" and David popped up off the bed and started getting mad. He grabbed at me and pointed to his wheel chair. I said, "No...you are going to stand up on your walker so they can check you out!" That is all it took. He shook his head NO and he started punching and screaming. Yes....his frustration was to this point. After a punch that landed squarely in my eye, the PT decided it might not be so necessary to see him on his walker after all. Once he new he had dodged that bullet....he was fine. Not another problem from him. So much for a non-verbal child not getting their point across.

As I said though....in many cases David is where he was a year ago, but in some....he still has a way to go. In my head, I thought Dr. K would look at him and say....we will take out the plates and then go from there. This was my plan anyway. I was wrong. How unusual. After looking at David she said that surgery will happen when his knees are straight. While his knees are almost there....they aren't quite there yet and removing the plates sooner would defeat their purpose. She said they will likely be straight once he has another growth spurt. Another appointment has been scheduled for October to check them again, but if he has a growth spurt.....I need to call to get him in sooner. Until then she wants us pushing David as far as we can. Except for stair climbing....she wants him off his knees and moving on his tushy, or with his walker or wheelchair. Yes....she wants him to learn to love his walker again, so I will dawn the armor (you too Melanie and Niki) and we are going to have to get him used to it all over again. To help this along....his old leg orthotics which had grown much too small were stretched so he could wear them while the new ones were being made....and they will have additions, which I am sure his school PT is going to be happy about.

In the past I have been unhappy with school PT from time to time and I have made no bones about it. However, I have to hand it to his current PT (Melanie) and also his para (Niki). I will say that physically David is back where he is primarily because of these two women. If I haven't said thank you.....THANK YOU! Working so closely and diligently with him also means they get to take a lot of his fighting back unhappy moments, but because of this....they ALSO know without a doubt what works for David and what doesn't. When he is fighting....there is a problem. So that I would have the big picture, the picture even I don't see on a daily basis because he is at school.....they took pictures of where his old orthotics were rubbing on his legs and feet and how his feet looked after wearing them for a period of time. This was unbelievably helpful to the orthotics crew at Shriners and they stated that they wished this happened more often. Melanie also sent a letter to the Shriners PT stating what she had seen with David and what she felt he needed. Both the Shriners PT and Dr. K read the letter. They didn't necessarily agree with what Melanie said feeling that it might put too much stress on his knees but I didn't agree with them. I know....where is my PT/MD degree? My thinking though was that Melanie sees him far more than they do and I trust Melanie. I don't think she would suggest anything that might cause knee or other issues. I think she knows that this would help him....so I persisted and I told them why. Afterwards they both agreed that it "might" help....so off we went to get fitted with a belt with adjustable straps running down the legs that helps to pull Davids hips in a bit while separating his feet some. Even the ortho people questioned doing this but after the straps were in place....everyone admitted that at least the left hip and foot looked better. The right one remains a problem.

What I learned about Davids right hip and foot is part of the continuing saga that unfolds each time we go. Davids left hip, knee and leg are doing great and as I said....I think this new belt and straps are going to make that progress even further. However, his right foot that I have been so worried about is not his foot at all. It is the hip. When David had surgery last year....they plated his left hip but not his right. At the time, that was the worst hip and they were hoping that correcting it would be enough but now the right is having its own issues. So...when he goes in to have the plates removed they will also go in and plate his right hip. This should then bring both hips up to speed and move things forward much more rapidly. Fingers crossed. Yes...this makes the next surgery and bit more intensive but still not as harrowing (to me anyway) as the last.

We also have the issue of his spine. David has overtime developed a bit of a hump in his back. In October they did x-rays of this and then again yesterday. They compared the two and there has been no new curving but..... it will progress. They ask me if he leans all the time. Yes...he does at times but he can also sit straight as a string if he wants to. This is probably why his hump has not increased much. For now...there is nothing they can do about his spine. A brace they feel would have to be so tight that it would break down his skin and also make it difficult for him to breath. No thanks....we have enough issues. So instead....for a couple of more years we work on his core strength and make him sit as straight as possible at all times. Then when he is about 15 or 16 he will have spine surgery to correct his spine. Yeah I know.....another surgery.

All in all....Dr. K and the Shriners staff were pleased with what they saw. Apparently nothing going on is unexpected and I have grown to love Dr. K's direct attitude. I know if I ask a question....regardless whether I like the answer or not, she will pull no punches and give me an honest and direct answer. Sometimes those answers have stung a bit, but other times like yesterday.....this is immensely comforting. When I asked about his spine she said it WILL get worse. No beating around the bush, no hedging just a flat out definite. HOWEVER.....surgery WILL make it better. It can't fix the hump already started....but it can stop further curving! YAY! I take that as a win.

As I said....I plan these trips to the second but this trip was not to be planned by my hands apparently. My plan to leave home at noon was decimated before we got started. I left the walker at school and hand to turn around and pick it up. I forgot to refill a prescription that David needed for the trip. Had to stop and do that and wait to pick it up. It was after 1 p.m. before the trip ever even began. It turned out perfect though as we missed traffic in Kansas City and pulled into Columbia, MO........ where my aunt and uncle live and we stay over night on these trips...... at 5:30 p.m. It was a beautiful thing.

The return trip home had me a little unnerved though. Since David's appointment was at 9 a.m., I was hoping to be on the road no later than noon as I was driving straight through to home. As sometimes happens though....Dr. K was caught in an emergency and we didn't get to see her until after 1 p.m. which didn't get us out of there until after 3 p.m. There were storms predicted for our drive home and it was already beginning to rain in St. Louis. My brain was shot and I couldn't even mentally figure out times we would hit certain places.....so I just drove. We missed almost all major traffic and when we did hit the storms.....it was by Emporia where the traffic was almost non-existent. I was thankful, grateful and so tired when this trip was its end. I would say over all....it was a great 30 hours.

In case you don't know Shriners, it is a place of unending miracles. Everyday kids come in there with life affecting issues and everyday kids come out with new abilities and new possibilities. Through Shriners....David is a miracle in the process. Even with the occasional hiccup in the road.....he is progressing and with the combination of  the amazing Shriners staff, Davids school staff and Davids abounding strength and fortitude.....I really believe that someday soon.....David will walk!

****If you have a child or know of a child with orthopedic issues, cleft palate, neurological or burn issues please contact a Shriner or contact the Shrine Temple nearest you. They not only can but they will help you to change a child's life. Here are a list of Shrine Temples through out the United States. 

Behind the Scenes of Special Needs

Do you ever have a day that you have planned out in your head....and before your feet hit the floor the whole day has turned inside out and NOTHING is as you planned? That is today for me. While I do fly by the seat of my pants most days....when I do plan something, I hate it when things fall apart. It makes for a very unpleasant me. Today is one of those days. Both dogs and kids have seen a not so pretty side of me this morning. No....today has not been one of my finer moments. Although my day is jam packed with things I need to do and should be doing as we speak....I thought it better to take a few moments and decompress and what better way to do it than to blog. Again....something I wasn't planning to do today!

Part of my problem I know is anxiety. Ever so often it gets the best of me. Why? David. Most of the time when I write on this blog I am either updating you or giving you history. It is always about David, but I am not sure that I ever have talked much about the other piece to this life puzzle....Davids family.

When you have a special needs child...the first thing that goes through your mind when you are hearing diagnosis and prognosis is a complete and utter shut down. Especially if you have already had other children with no issues. How do you process this new found situation? Most of us I don't think do at first. We listen to what we can hear and then we process the info little bits at a time.

It is impossible to look at your child and not see perfection....even in the worst circumstances, and as they grow...a new norm sets in. You forget what your other kids did at that age and just celebrate what this one is doing on any given day. Normal milestones leave your mind completely. You are simply grateful for even the smallest events......especially if you were told they might never happen.

With David....we were beyond lucky as his health outside his developmental delays was very good. He did have his share of colds, ear infections and such....but no complications or diagnosis related issues. He was on no medicine, he was a happy child and it was easy to forget that there was anything wrong with him. He was simply David and we all loved and adored him. He could make the worst day turn around just by seeing his smile or hearing him laugh. I found myself and my other kids living in a dreamworld of our own creation where David was concerned. In our eyes he was/is perfection and there was nothing that he couldn't accomplish if he wanted to. It was because of this dreamworld that I dreaded the yearly IEP the school had for him. For those of you who do not know....IEP's are meetings the school holds where principal, teachers, therapists, parents and any other people who deal with your child's at school health or education come to. You sit around and hear from each person present on how they feel David is doing and goals are set up for him to accomplish before the next IEP. Regardless what is said at these meetings.....I always leave feeling deflated. It is a wake up call to the fact that regardless what myself or my kids think about David's health and progress.....the fact is.....he is special needs! He is different than mainstream kids....and I hate it. I hate the label, the stereotype and the fact that even though these people spend more time during the day with him than I do.....they still see my child as somehow defective and less than everyone else. I hate that they isolate him most of his day from mainstream kids and that sooner or later....he will start to see himself as different and maybe even less than others. It breaks my heart.

When David was 8, I was given another wake up call that David had issues that most other kids did not. This was when he had his first seizure. It was terrifying to me. Again....I had no way of processing this at first. I cried. I panicked and I felt very alone. Most of all though....I worried for David and his future. It took well over a year before the doctor could convince me that David would likely be fine and might even grow out of seizures eventually. Until that time....they could be controlled by meds. The trick was to get the right combination of meds on board to do the trick. That took a bit longer than a year....but eventually we hit the jackpot. The only problem was that with every growth spurt and every hormonal change....the meds also needed changed. This usually meant going through at least a week of seizures and then blood work to find out his levels and then another week of allowing the new dosage of meds to work. It has been a vicious cycle and one that has ended him up in the ER and even the hospital more than once.

Through this all....I worry. I cry. My other kids worry. While as the doctor has told us time and again that his seizures (the kind he has anyway) have little chance of damaging him permanently or killing him....the fact is that in the back of all our minds, we all deal with the constant worry of having a life without David. It is unthinkable. David is a very strong glue that keeps us all centered and holds our family together. Especially his mother.

My scariest moments have been when I knew there was a chance I would not be walking out of the ER or hospital with David. There have only been a handful, but each time my mind quits functioning. At least to me it does. I go into this auto pilot mode and force myself to be as present as possible....the whole time inwardly I can feel pieces of my heart breaking away. The first time outside the NICU that this happened was when his shunt malfunctioned. David has a shunt that constantly drains fluid from his brain into his abdomen because he is hydrocephalic. If the shunt malfunctions or stops working for any reason...then the fluid can build up and cause brain damage and death. Some kids with shunts have to have them replaced often, miraculously David has only had to have his replaced once....but there is every likelihood that he will have to have another replacement in the near future. When a shunt malfunctions.....they become deathly ill. They are listless, often run a high fever and throw up. The day Davids failed....I had no idea what was going on.....I just knew he was dying. God hears from me loudly and repeatedly on days like that. Once diagnosed and taken in for immediate surgery.....he was the old David before he was even out of recovery. The combination of relief, gratitude and anger after it is all done is quite an emotional load. Yes...I said anger, because I always am angry after a scare. No...not at God or David, but at reality....because once again my dreamworld is shattered and I am angry that I have to keep facing all of this alone. Selfish...right?!

David has given me this scare several times with seizures and then again last spring after he had surgery at Shriners. Hearing that he came within a half hour of dying and being 500 miles away from home and being basically alone, brings on a whole new set of anger issues. Those things don't die easily and knowing that he has yet another surgery in his future keeps me up more nights than I like to admit.

We have now hit the teen years. While puberty was onset early by meds he was given in the NICU.....his hormones have really set in. We had the VNS (vagal nerve stimulator) implanted back in September to help regulate his seizures inwardly and also with the hopes he could come off all or at the very least some of his seizure meds. While seizures have been few and far between.....they are obviously underlying. A month ago we began weening him from one of his medications. When I started the second phase of the cutback....the school began seeing more aggression. While usually we don't see as much at home because home is less structured....we even saw some here with the addition of a loss of appetite. NEVER unless he is sick has he had a loss of appetite, but he was not acting sick. Frustrated I called the doctor who said they likely needed to adjust the VNS, but until then....we needed to take him back to full strength meds. We did. I question everything though. Is the aggression hormonal or seizure related? Is his loss of appetite hormonal, seizure related, med related or is something else going on? Is he getting sick or is his shunt starting to malfunction? My mind is in constant turmoil and it is harder and harder to find my happy place in my dreamworld.

This morning it kind of hit me all the way around. Nothing with David is easy anymore. All of the changes in insurance are about to drive me to drink and just when I think I have it all settled...I find out that there is new paperwork to fill out and new questions to answer....even though I have already answered the exact same questions and less and less of what he needs are going to be covered. It doesn't help that I also have family who are trying to push me into putting David into a home if not now then at least after he graduates (they sadlyhave always seen him as a burden). And finally after talking to other parents at Davids school....I am starting to question if he might need to go elsewhere(another school) in the future. 

I have a vision in my mind of the future. Of course none of us knows what the future holds...but we wouldn't be human if we didn't dream and didn't plan. Of course if I were wealthy....life for all of us would be much different as would the future, but as things are....I just see David always being a blessing and always being my perfect David. It is hard to separate the dream from the reality but the reality is.....everything I do I do for the sake of David. Every insurance battle, every doctors visit and every trip to St. Louis are so that David can have the best life and the best future possible. It is stressful though and at times it is hard....really hard. It is harder still when I have those in my life that I don't always feel have David's best interest at heart and those (family members) who view both David and I as somehow less....him because of his issues and me because apparently I am somehow lacking as a mother.

Since David has come into my life....I have dealt with more hospitals, ER's and doctors than I have at any other time in my life. I have prayed my child back from the brink of death more times than I would like to think. I have fought with schools, social workers, therapists, doctors and insurance companies....not to mention my own family. I have been called names and insinuations have been made about me by people on the outside looking in who have no idea what life with a special needs child is like. And yes....I have shed many many tears. It can be exhausting.

The thing about David....and I am sure most special needs kids is the fact that there is never really any norm. You can never sit back and get comfortable with anything because if you blink your eyes.....things can change...and often not for the good. David has a shunt, a baclofen pump and a VNS and while all of these things are life supporting and make his day to day life easier.....at any moment they could turn life threatening. All are foreign objects in his body and any one could get infected. He could possibly have a life threatening seizure. His shunt could malfunction. All parents have worries about their kids and parents with special needs kids have all those same worries and many more you would never dream about. Some can be anticipated and others like many of the things we have already experienced....come out of left field and knock you for a loop. You have to process them and completely rethink everything you have ever known.....over and over again.

Okay....so this is the side of a special needs child that I rarely if ever talk about, and yet it is something that is with me 24/7. Granted....usually I push it all to the back of my mind and carry on, because lets face it....you can't live in crisis mode every hour of every day. Sadly though....my dreamworld has been taken over by reality more and more and those moments of ease and non-worry are less and less. With all this being said though and with everything I know now that I didn't know 12 1/2 years ago.....if I had it to do all over again.....I wouldn't miss a second. You will never know the joy and happiness David has brought to all our lives and quite honestly.....he has taught us all to love in a way that none of us ever imagined.

I guess maybe I am writing this not only as a way to help me process this day, but also to bring a little awareness to what goes on behind the scenes of a special needs child. If you see a special needs parent that looks tired.....you can bet.....they are tired. They have likely been dealing with doctors, hospitals, illness, insurance or a multitude of other issues you would never dream about. And don't forget....just because we have a special needs child...it doesn't make us exempt from having to deal with all the normal stuff life throws at us. It just means we have to buck up and deal with it ALL. If a special needs parent looks worried....they probably are. They likely are worried about an old health issue, a new health issue, not enough money to pay for everything, their other kids, having enough time to do it all and making sure that everyone gets everything they need. So if a special needs parent forgets to pack a lunch, puts the kids shoes on the wrong feet, doesn't get teeth brushed or doesn't get back with you immediately....it is not because they are lazy, forgetful, neglectful or ignoring you....it simply means that life is in hyper speed and they are juggling all they can with normal life and special needs life and.......it might be nice if you cut them some slack!

Updates and Moving Forward

There have been some mutterings on facebook(fb) that there have been no real updates on the Incredible Mr. David in awhile. Looking back at this blog....apparently they are right. Other than the occasional post or two....I really haven't been very good about keeping people up to date....so today I will remedy the situation and give full David disclosure.

Surgery and recovery update: David went back to Shriners for a check up in October. I will admit that I was terrified of this visit as it seemed to me his progress was not what was expected. He used his wheelchair 90% of the time and the other 10%  he was being physically lifted or carried by someone. I just knew the doctor was going to tell me that he had gone through all of this pain and suffering for nothing and that he was wheelchair bound for life. I literally lost sleep and had more than a few crying break downs over it all.

When October came about....Zachary was not able to make the trip with us, so Thiry (an amazing friend) went instead. I was so glad she was there because I knew if the news was not good and I started to break....she would instantly put me back together whether with words or a good swift slap upside the head. Zachary did not wield such power. Amazingly the doctor said that David's x-rays were "beautiful" and that he was doing wonderfully. It seems that I had my information mixed up. The things I thought he should be doing at this point were things that were not expected for another six months. Currently they were just looking for his legs and knees to be as straight as possible (and they were almost there). They did not expect him to be standing and certainly not walking. Apparently he was right where he needed to be...and I was freaking for nothing. The doctor reminded me that we were only six months out on his surgery and that it had been a very extensive surgery. She was very pleased with what she was seeing and she said everything else would come in time. She then sent us on our way and told us to come back in January.

You can't imagine the relief I felt coming home. It was like a load had been lifted off my mind and where unbelievable fear and stress had been....it had now been replaced with perspective and peace. Since....David has taken off and started doing things like crawling and climbing the steps on his knees again. He also easily gets on and off furniture and is doing well in school. All the things the doctor said would happen in time.....seem to be happening. His January appointment has already been rescheduled twice and is now currently set for February 22nd. At this appointment we hope to hear when they plan on doing surgery to take out the metal plates in his knees and hip and also what if any kind of special leg/hip bracing he will need for the next leg of his journey. It seems so strange that a year ago this time....we were just starting this journey and it was such a strange and foreign one with so many questions and what ifs. Now....here we are nine months later and we are well on the road to walking. Amazing!

The VNS: If you remember....in September David had a little doo hickey put in just inside his chest wall called a vagel nerve stimulator or VNS. It's purpose was to stop his seizure activity and hopefully be able to ween him off at least some and maybe even all of his current regimen of seizure meds. Since the VNS was put in....we have yet to be able to coordinate a return visit to start the weening of meds, but the stimulator has been amazing. In four months David has only had a couple of episodes. Other than that....he has been seizure free. While he still has his moments of upset (usually during physical therapy) for the most part...his attitude and temperament have changed immensely. No longer does he seem to do much screaming, biting and pulling hair when frustrated or upset. He also is much quieter....not having frequent boughts of unexpected yelling. Much of the change is attributed to the fact that his brain is not constantly firing silent seizures or not so silent seizures. According to the doctor....if we are able to start weening off some of the more attitude changing seizure meds....we should be seeing even more change.

Speaking of seizures....I guess it is rather appropriate that I am giving this update on David today. Five years ago today is the day that I walked in and found David on the floor, basically unconscious, jerking and looking pale as death. I had no idea what was wrong and truly thought he was dying. I could get no response from him and his eyes...barely open would only dart back and forth from side to side. Once EMS was called and he was admitted to the PICU....that was when I learned he had suffered a febrial seizure. It was the first seizure he had had since his days in the NICU. Little did I know then that this would be the start of a new way of life for David and the entire family. Since that day he has only suffered one more full on febrial seizure....but many many short lived but none the less scary seizures and many many trips to the ER. If the ER gave out hospital frequent flyer points.....by now we should be able to stay an entire month for free.

As far as David's other issues go: he is doing well. I often see other parents of Cerebral Palsy (CP) kids post on facebook about their child being in the hospital, being sick or having some issue related to their CP and I always think....there but for the Grace of God...... It also brings home the fact that David has much hardware in his body from his shunt, to his baclofen pump and his VNS to all the plates and screws from his surgery. Any of these could result in infection. Any of them could suddenly malfunction, quit or just simply cause his body problems. Unfortunately....that is just the nature of the beast when you are dealing with CP and all of its intricacies. However, you can't fear the what ifs and stop living nor stop letting him live. So you find your normal and move on.

David of late has had his own version of the flu. He has run temp and had congestion. He has been tired and gotten his days and nights a bit mixed up....but he seems to be much better. We now are only dealing with a bit of congestion....and after being out of school a week....I think tomorrow he will be back. I know it is something he is looking forward to and I am sure he has been missed.

So as you see....the Incredible Mr. David is doing well. Soon he will be on the next leg of his journey to walk and moving forward to be the most independent he can be. Add that to being seizure free and the possibility of being med free and life is looking good. I hope to be a little better about updates in 2013 and am greatly looking forward to a year of David learning to walk!

Shriners PR, VNS and Other Updates

Okay...sadly I must admit that I am writing this blog because I am in procrastination mode. A million and one things to accomplish this week and I choose this. However....if I must procrastinate...this is the place to do it. Don't you agree???

Before I go further...I must ask if everyone has noticed the PR and media work that Shriners has been doing of late? I have seen numerous commercials on tv for Shriners as well as billboards in Wichita. I am thrilled and I must say....it is about time. The world should know how great Shriners is and if I could....I would shout it from the roof tops. As it is.....I am constantly telling people about what a wonderful place it is and I am not surprised to find that many like myself had no idea what a gift from God Shriners can be to so many families. I have even directed a family or two in the Shriners direction. I thank God every day for such a miraculous place and for the people who directed me there.

So onto current news of David. He has really been wonderful for the most part. He has missed four days of school so far. One because he really wasn't feeling well (allergies and all), one because he did an all nighter. The school was trying to experiment with him not having a nap after lunch and so they kept him up all day. By the time he got home he was exhausted and cranky and just too tired to sleep. This continued until 5 a.m. at which time he zonked, so school was out of the question that day. What did we all learn???? As long as David is on seizure meds...he needs an afternoon nap! Finally....he missed two days because of his VNS (vagal nerve stimulator) being put in. One day for the surgery and one day for the recovery.

The surgery went very very well. We went in on Thursday morning and he was in surgery by 9 a.m. I knew that it was a fairly simple surgery but after his last surgery...I couldn't help but worry about his heart rate. The whole time waiting I kept hoping that all was going well and that his vitals would stay good. My heart nor my head were up for a replay of April. It was quite an interesting experience though. Not only did Dr. Grundmeyer and the anesthesiologist talk to us before surgery but also a gentleman from Oklahoma City where the VNS company is located. Apparently he or an associate travels whenever and wherever a VNS surgery is happening to oversee the procedure. He talked a little with me before the surgery and then when Dr. G was closing the VNS gentleman came out and talked to me more.

It was kind of funny when he came to the waiting room to find me. He was actually laughing. He said "Do you know what a character your child is?" I'm sure I looked a little frightened about what his next words might be. Then he laughed and said that David boogied, laughed, clapped and said "Yeehaw" the whole time he was in the OR until they put him under. Yep!!! That's my boy. He also assured me that the surgery had been text book and that David was doing just fine. He then gave me instruction on the VNS.

To put it simply....a VNS is about the size of a quarter and runs on a watch type battery. It is put in under the skin just below the left collar bone. Another incision is made on the lower left neck. This is where the pigtail type wire goes over the vagal nerve. In about two weeks after the surgery....we then go into see Davids neurologist Dr. Shah and he will then turn the stimulator on. It takes a period of time and several adjustments to get the VNS right so that it stops all seizures. If a seizure breaks through though...there is a magnet that David carries with him all the time that can be placed on the chest incision for three seconds that will stop seizure activity. To tell you how great this is...if a person has grand maul seizures that last 2+ minutes and the magnet is placed over the VNS for 3 seconds....it cuts the life of the seizure to about 30 seconds. For Davids 30 second seizures....it would make them no more than 10 seconds. And for those of you who have experience grand maul seizures or have been with someone who has had them....you know that the aftermath is exhausting. A grand maul is like running a marathon. Afterwards the person will often sleep 12-24hours. If the magnet is placed over the VNS for three seconds after the seizure...the recovery time can be whittled down to just an hour or two. Amazing! VNS guy also said that 99.9 % of the patients who receive a VNS are seizure free within 8 months; 88% have tremendous attitude and mood change for the better, 75% can cut their seizure meds in half and 25% come off all meds altogether. Other incidental side effects from the VNS have been cases of kids who couldn't walk who start walking and non-verbal kids can start talking. It all has to do with the brain not constantly being bombarded with seizures. Amazing. I also learned that the magnets that are used are VERY strong. They can't come in contact with any kind of cards that have magnetic strips on them like bank cards, credit cards, etc because they will ruin them. They also can't come in contact with cell phones or they will mess them up too. Finally....they can be put on the refrigerator for safe keeping but not on the ice maker side as it will ruin your ice maker. Hmmmm....that is pretty darn powerful.

As I said...the VNS runs on a watch type battery and it should last anywhere between 3-6 years. However....certain things can eat the battery faster....such as close lightening strikes and constant cell use....also the number of times it has to be used to stop seizures. Hopefully though we will keep our uses, lightening strikes and his cell use to a minimum. Bottom line though....I think this could prove to be an extremely important gadget for David.

When they finally took me back to recovery....the words I dreaded came from the nurses mouth. She said...."His heart rate is a little high!" I nearly choked. Not again was all that I could think. I prepared myself as I walked in and asked the dreaded question...."How high is it?" When she came back with 120 I almost cried with relief. All I could think is 120 is a walk in the park. I had totally braced myself to hear 170-180. Over the next 30 minutes his heart rate came down nicely and he woke up. He was obviously sore and a little quiet...but no worse for the wear. After I took him home...for the rest of the day and all of Friday he really didn't want to move much. He laid in bed and slept or watched Spongebob. Saturday he wanted to play but kept pointing to go back to bed. By Sunday though he was his old self and raring to go. His recovery has been beautiful and Wednesday we go in to have the VNS turned on.

During the ordeal he did throw a few seizures as his meds were missed or not on time due to the surgery. He had about 4 seizures and then the meds had them controlled again. I just can't imagine how wonderful life would be if this VNS controls his seizures to the point of not needing meds. If that happened he would be a med free child and what would his attitude and life be like not having to stop everything 3 times a day for anywhere from 5-10 pills at a time. Wouldn't it be wonderful?????

Since the VNS we have also had to go get measurements for David a new walker (he has way outgrown his old one) and also to have his wheelchair revamped to fit him better. He is going on his 6th year with this one and they can only grow it one more time. Since his April surgeries his hip base is wider and his knees tend to turn out rather than in....thus making his chair too tight for his body.

At school David no longer fights his tummy time or his stander time and he is making great strides in weight bearing. Just last week he walked 6 feet with his walker. There is still difficulty there as he is still getting used to his "new" legs but he is definitely making progress. His legs are beautifully straight and every day it seems he tries to do more. Our goal is to have him walking with his walker by January. If anyone can do it....it will be David!

So as you can see....David is progressing nicely. As hard as those first couple of months where after surgery....they are kind of like child birth and quickly forgotten. I would do it all over again if I knew it would get him to this point. David is amazing. We will be going back to Shriners in October for another check up and hopefully we will then be ready to start looking at his spine and be making plans to take out the plates in his knees and hip. So much to do and so worth it to give David the most awesome chance at an independent life!

No News is Good News

I am back. Apparently I have been shirking my duty about keeping people posted on David. I have had numerous people of late scolding me because I have not been blogging about him. In fact when I went to enroll the kids at school the other day...three quarters of the conversations I had with people were about how David was and why I hadn't been a good blogger of late. Hmmmm! So let me start by apologizing and then remind everyone that no news is good news. Right???? In this case it is.

Summer at the Elam homestead has been busy, somewhat productive and for the most part....uneventful. We got rid of David's hospital bed the end of June (actually the hospital wanted it back). We then moved David back up to his own room and his own bed. It was like an invisible fog was lifted from all of us. I think it was the first time since his surgery that we all sort of felt like we were getting back to some form of normal and that life was not always going to involve pain, therapy and more pain for our little man. We immediately turned the therapy room back into a therapy room adding a small table and bench seats so that David and his para Nikki could work on school stuff when he wasn't  doing PT.

David's summer has been two trips to St. Louis, PT, braces and lots of pool time. He loves his pool time and he has gone from just holding his legs in the pool in a frog position to actually trying to kick them. He was also suppose to have the VNS put in for his seizures, but he would have had to have been out of the pool for a month, so we decided PT trumped seizures until fall. He is now set to have the VNS put in in September. He has done extremely well seizure wise this summer (watch me jinx myself) so I am going to ask before they do surgery to do another EEG on him. I would like to know if maybe the seizures are lessening on their own before I make him undergo yet another round of surgery and anesthetic. At any rate we now have Sept. 13th as a tentative surgery date.

Last week we made a very quick trip to Shriners for Davids check up and also for him to get his AFO's (leg orthotics). I have found that with school starting and still needing to make St. Louis trips that we can leave after school one day and be home by evening the next. That will certainly be better than Z missing several days of school in order to help me take David. At any rate the doctor seemed pleased for the most part at David's post surgery recovery and she said his x-rays looked beautiful. We found that the droopiness of the foot which I have consistently worried about since surgery has really nothing to do with the foot at all and is more about the strength of his hip. Once the muscle and strength are built back up in his hip then the foot will straighten itself out. Since David missed quite a bit of therapy during his broken ankle...he is not a progressed as Dr. Keeler would like to see, but in light of circumstances he is doing well. She is not happy with the amount of PT he is getting from the actual therapist. This summer only 2 visits have been covered (which is not the therapists fault)and Dr. K said she wants him seeing a PT 2 times a week for at least an hour. This is going to bring on problems of availability and what insurance will cover. Hopefully the Rx she wrote will help. She also wrote for him to have a larger walker and a larger wheelchair. I am praying that with script in hand that this all will be covered.

The things she was really pleased with were the fact that David is trying to stand with his walker and weight bear even if it is just for seconds at a time. He has been doing a lot of sitting and standing and I contribute a lot of his success to the fact that the school loaned us a stander for David to stand in 30 minutes a day to help strengthen his legs. Now I would be remiss here if I did not thank some people for their part in all of this. First of all I would like to thank his teacher Sarah for getting the ball rolling on the stander and the school for okaying it. Then I would like to thank his para Nikki, another para Anita and his PT Melanie for spending and entire evening overhauling it so it fit David's current needs. Finally I would like to thank Nikki for all of the time she has dedicated to David this summer. David is not always easy or cooperative when it comes to PT or even just sitting and behaving. Nikki just goes with the flow though and makes the whole situation easier on all of us. David truly trusts and loves her and that is why she makes such a good para. David is a lucky little guy to have such caring people in his life.

At the beginning of summer if you remember....we were having a horrible time with tummy time. David hated it and fought it with a passion on a daily basis. He hated it so much because it stretched those hips and of course was uncomfortable. I am pleased to say that currently tummy time is nowhere near as big a battle as it used to be. Now tummy time usually turns into nap time and he often will stay on his tummy anywhere between 30 min. to an hour. Wow! What a long way we have come.

All in all....everything went well at this appointment. He got his new orthotics, he got some new night braces and they even threw in a snazzy pair of new shoes to go over the orthotics. Everyone for the most part was pleased and gave David the homework of being up and taking steps with his walker before they see him again in at the end of Oct. I am thinking this is very doable.

As always I want to thank the Shriners staff for their kindness and hospitality. The appointment ran like clockwork and the boys and I were on the road by noon. So there you have it. David is moving right along and everything looks good. Once we get a few things adjusted we should be well on our way to a very good recovery and even better future.