Surgery is Under Way

Life has been a crazy whirlwind of commotion and preparation all leading up to right now! Right now David is in surgery and with God's grace....hopefully on the road to walking!

As a mom....this last week has been one of great emotion for me. After the last surgery and almost losing him and then almost losing him again in October after his seizure, it was all I could do not to have a complete breakdown thinking about this impending surgery. There was a part of me that wanted to grab hold of him and say...."No more! He's been through enough! We've been through enough!" Then I would remember the big picture and know that I couldn't see him in that wheelchair and look him in the face in the years to come if I didn't give him every possible chance at an independent life. So here we sit.

It feels as if I haven't slept in weeks. Truthfully....I haven't slept for more than a couple of hours at a time for a good two weeks and my mind and body are both starting to feel it. I am thinking that maybe towards the end of January I will get to have a night of complete, stress free and uninterrupted sleep, but until then......I will survive on coffee and mom adrenaline!

I think David knows that something has been up for awhile. I have not really talked to him much about it as I didn't want to raise his anxiety but the back and forth trips to St. Louis and the poking and prodding have definitely caused a change in his attitude.

Last night David could have nothing to eat or drink after midnight. He was asleep by 9 and when he woke up this morning he was more than a little thirsty. His lips became more and more chapped as the cold morning air hit them and he was not allowed a drink. Needless to say this did not put him in the best of moods and I was afraid we might have a knock down drag out fight when it came to IV placement. Irritated as he was....he just didn't have much of a brawling spirit and the IV stick was pretty much a non-issue.

We had a constant barrage of nurses, anesthesiologists, residents and the doctor in and out of his pre-op room. They decided to put in an epidural to help with pain management after the fact in hopes that this would keep his heart rate down. We don't need any off the chart heart rates after surgery. They are also anticipating some blood loss, so blood products are ready. The doctor is also leaning highly towards putting him in a cast from hips to feet to help insure a successful outcome after the fact. However....it will depend on what he finds during surgery.

They gave us an approximate surgery duration of 4-6 hours with no definites. It could be shorter or longer but their best guess is within those parameters. We were given our own private waiting room cubicle and are given updates every hour to hour and a half. Our first update was at 9ish (after going to surgery at 7:30). He had been put under, had been given the epidural and they were beginning on his right hip! After surgery he will either have the breathing tube removed and be taken to post op and then the floor OR....if his heart rate is too high or there is any kind of complication....the breathing tube will remain in and he will be taken to PICU. As you can well imagine....I am praying for option 1.

Finally....our hospital stay can be anywhere from overnight to 2 or 3 days. It all just depends on how well he does and how quickly he seems to recuperate. I am thinking best case scenario will be about 2 days.

So I am sitting here intellectually knowing that he will be fine...and trying not to vacation in the negative. David has worked too hard and waited too long for this surgery to be anything but a success.

Please keep my boy in your prayers and know that I will keep you all posted in the hours, days and weeks that follow!

Pushing Forward

It feels like literally eons since I last posted. Maybe because it has been. Life has been crazy busy and since they moved up the surgery from the 14th of January to the 31st of December.....we have been in hyper-drive!

I went ahead and did the Cheesecakes for David again! I wasn't going to but several talked me into it. It was amazing and overwhelming as I had about 310 orders. There was about 2 full weeks of baking 12-16 hours a day....but I was grateful for every second. It is up in the air as to what post operative things such as physical therapy will be covered....so every cent earned will help.

I finished my last cheesecake at 4 a.m. the 23rd. I did my Christmas shopping that afternoon, got my last cheesecake picked up/delivered on the 24th, wrapped gifts and greeted Santa with a smile come 1 a.m. Christmas morning. We had a nice though sleep deprived Christmas day and then yesterday at 5:30 a.m. we headed to St. Louis for Davids pre-surgery consult with his doctor and anesthesiologist.

I have to say that either I am just getting more proficient at making that St. Louis drive or yesterday's drive was just easier. The traffic was almost non-existant both coming and going and the trip although longer coming home than going....went very smoothly. This time instead of going to Shriners we went to St. Louis Children's hospital where our new Shriners doctor (Dr. Schenicker) has offices.

First we saw the anesthesiologist who will be working with David! He had obviously read David's chart from cover to cover as he knew every detail of his last surgery. He told me why he felt that David's heart rate had remained so high last time and why he felt that he aspirated. He had blood drawn on David yesterday as he said that since David had to be given blood transfusions during the last surgery he wanted to make sure that he hadn't developed any anti-bodies towards the blood. If he has...then they will have to go a different route with blood products. He didn't anticipate any anti-bodies but if there were some....he wanted to know now and not during surgery!

Then we saw the doctor. He and a resident checked David's legs and hips out thoroughly. What we came up with is that they will not be doing anything to his legs. They will be focused on his hips. They will go in and remove the plates and then adjust his hips and replate them. I asked the doctor about casting him as this is what I was told they would do last time. He said that it was a possibility but he wouldn't know for sure until he got in there and saw what he was working with. Basically if he feels that casting David is the best way to go he will do it and if not....then he won't. After doing these surgeries for about 50 years and being responsible for literally thousands of kids walking.....I trust him.

The best news was the fact that since they are doing only the hips....the surgery should be a much shorter one. They also seem to think that the recovery will not be as painful and if all goes as expected (please God let it!) then we should be home in a couple of days. I am good with that!

Thanks to some amazing people, David already has a wheelchair and a hospital bed. We are good to go and won't be scrambling at a distance this time. I also have a much better understanding of both his surgery and his recovery this time. While my stomach is still in knots and will remain that way until he is back home and recovering well, this time at least....I am not a basket case with no idea what we are walking into. Still....I am praying constantly that all goes as planned and we don't have any unexpected Elam wrenches thrown into the mix!!!!

After surgery, David will still be attending school....it will just be home bound where his para and his therapy teachers will be coming to visit. When and if he actually returns to school this year will be left in the air until we see how he feels and how physical therapy is going to fit into his life. Those are minor issues though that we will work out as we go.

With all the activity here in Davidtopia.....it has really been a blessing, as I have had no real time to fret and worry over things I have no control over. I have just had to put my head down and keep moving forward. The next few days will not change that at all as my dance card is full right up until the second we hit the road headed back to St. Louis. This is not a bad thing though as there is no time for me to dwell on the negative or vacation in the "what ifs." I have a feeling God planned it this way.

So you will likely not hear from me for a few days as laundry, house cleaning and last minute preparations will trump blogging, facebook and any other socialization's I might like to hide in. However....trust me.....come Tuesday you will be hearing from me almost daily for awhile!

I am grateful to all of you who love and care about David so much. Your good thoughts and prayers are invaluable to us and I have no doubt will be the key to helping us make sure that.... David walks. Thank you all from the bottom of my heart.

So now I leave you. If you happen to see me in the next few day with my head down looking very single sighted....not to worry. Just know that I am focusing on the big picture and keeping the Elam clan pushing forward to the next leg of David's journey!

The Next Stage of the Journey...Part 2

And so we begin the next stage of our "David Wants to Will Walk," journey.........

I finally got the call that Davids next surgery has been scheduled. In case you haven't been reading along and since I can't remember what I have told you and what I haven't.....here is a bit of a recap.

We went back to Shriners in October and saw a different ortho doctor. Our original doctor is no longer working at Shriners. The new one is the head of Shriners orthopedic department. Along with seeing the new doc we also got a new team working with us....including a new physical therapist (PT). It was the consensus of everyone present upon checking Davids legs, mobility and flexibility....along with looking at his x-rays that another surgery was necessary. Not the take the plates out and plate the other hip surgery that I had been thinking was coming, but his last surgery all over again.

Davids hips that originally were very turned in.....after surgery spread way out. In fact they have spread out so far that his feet now cross at the ankles making it impossible for him to stand properly. They are going to have to go back in and take out all the plates, pull his hips back in and then replate. They are talking about another 6-8 hour surgery. If you followed along with his last surgery, then you can only imagine how quickly my heart went into my throat on hearing this. Momentary flashes of almost losing David almost overpowered me. And I had to ask the really hard question. "Will David walk after this?" The doc told me that Davids legs and hips will now be centered so that his feet will be straight and flat so he can stand. The walking would then be up to David. I breathed a sigh of relief. If they do that much, I have no doubt David will do the rest. He wants to walk NOW and tries all the time but because of his hips and feet he currently has way too much difficulty. With this surgery, it should cut the difficulty to the point where David can take control.

This time I will be more prepared for the before, during and after of the surgery. I will know what to expect and how to plan. I already have a wheelchair for after surgery lined out and I am working on getting a hospital bed. I am a bit nervous about his post op recovery because of last time, but this time the surgery will not be done at Shriners, instead it will be at St. Louis Childrens where David ended up last time. They do not want to take any chances with his health or speedy recovery this time. I'll admit I was relieved.

A little side note here: Shriners in St. Louis is actually getting ready to relocate. They are building on to or around St. Louis Children's Hospital and hope to be at their new location in 2015. I think this is an amazing move for all involved as they will be able to more easily take kids like David who could have complications that Shriners currently is not equipped to handle. It will be a win for everyone. 

How this is all going to work financially before, during and after is a little daunting as somethings I know are covered because of Shriners but I have been told other things might not be covered. It has me a little on edge....but then again what doesn't these days. I am just going to have to have faith that it will all work out.

Davids surgery has been scheduled for January 14th and he will be the first surgery of the day as his will be a lengthy one. The week before we have to make another one of our mad dashes down and back as he has to see the doc and have an anesthesia consult. We will be starting the new year out with a bang and hopefully be back on the path to getting David walking.

His surgery will be followed by a 6-8 week recovery and I am sure frequent visits to St. Louis. His recovery will then be followed by extensive PT. Again...not sure how much PT will be covered by insurance. By this time next year....God willing.....they should be looking to take plates out and he should be up and walking....at least with his walker.

Someone asked me if I was going to start the Cheesecakes for David again to help offset expenses. I hesitate to do this because of the holidays and I know everyone is strapped for cash this year. I think I will just put this all in God's hands and have faith that it will all work out. What I will do though is ask that you all send out good thoughts and a little prayer every now and then that this surgery does the trick and that this time next year......David will walk!

Frequent Hospital Flyers

It has occurred to me, that I belong to a very elite group of parents that I will call the Frequent Hospital Flyers! To belong to this group you have to have a chronically or sometimes critically ill child who spends copious amounts of time causing your heart to stop and needing to be either rushed to the ER or admitted to the hospital. Sometimes both. Trust me....if you aren't in this group....thank your lucky stars and send up a little prayer every now and then for those of us who are.

Of late I have seen more and more parents becoming a part of the FHF club. I know several parents with kids like David who have Cerebral Palsy and all the not so fun things that go with that such as lowered immune system and seizure disorders. They and their kids know the inside of a hospital just as well as we do. Then there are the parents (and anymore there are many of them) whose kids are dealing with cancer. I can barely type the word....yet this is their reality. Their is a continuous hell of hospitals that I can't even imagine. I watch facebook as they are in for treatment, then their stay continues because the numbers don't bounce back and then when they finally get to go home for a week or two, often they are rushed right back when a fever spikes. It is a vicious cycle of ER, hospital and then hospital, ER! It is a rough life. 

On some occasions like a scheduled treatment or surgery, there is time to prepare and pack a bag so that the parent who is staying with the child is at least semi comfortable. However, in many cases when the emergency happens such as a seizure or a temperature spike, there really isn't a lot of time to pack what you need in case the ER visit turns into a hospital stay. And even if there was time to pack, chances are your mind is on your kid and not what is going to make you comfortable. It is also hard after the fact when you are there and you try to tell someone else what you might need. I learned this lesson well on my last visit to the ER and hospital stay with David. His seizure happened and there was no time to prepare before heading to the hospital so I was left to the mercy of my 17 year old son. Bless his heart he tried, but I ended up with 4 pair of socks, 2 bras, underwear and a pair of sleep shorts that are so short I won't even wear them around my kids. Sigh!

Today I decided that I would give a little heads up to you new parents that have joined this little club of ours and maybe even give a tip or two some veterans. Now before I go further, what I know and what I do are often two different things. That is why I ended up with underwear, booty shorts and no real clothes this time. It will not happen again. 

Keep a bag packed and keep it somewhere close so if you find yourself on the way to the ER you can toss it in the car. If the ER visit turns into a hospital stay.....then you are good to go. In that bag should be yes....underwear, but also a change of clothes and something comfortable to sleep in (preferably not booty shorts), toothbrush, toothpaste and a hair brush and hair ties. Maybe a little make up too. IMPORTANT: Don't forget any medications you take!!!! I also like to pack a couple of bottles of water and maybe a couple 100 calorie snack packs. Vending machine fair gets old and expensive.

Things you might not know about hospitals:
Most hospitals encourage parents to stay overnight with their children. Because of this, arrangements are made for parents. At our usual hospital, there is a parents galley stocked with coffee, tea, cheese, crackers, peanut butter, jelly and cup a soup. In the morning the kitchen brings up muffins for the parents and for lunch and dinner cold sandwiches. The hospital also has a Ronald McDonald room where you can do laundry, watch tv (parents and family) and snacks are provided. They also have a shower room for parents of kids in PICU along with sleep rooms as there is no comfortable place to sleep in PICU. The laundry facility makes it easy to have only a couple of changes of clothes.

Other hospitals we have stayed at give parents meal trays for free and some have huge laundry rooms for family laundry instead of just a single washer and dryer. It just depends on the hospital.

Even in the best hospitals though, sleeping is not always easy. Not because your aren't exhausted, but because there is nothing comfortable to sleep on. Most rooms are equipped with a reclining chair. Careful though because the minute you move it tries to fold you up in it. You can request a cot but remember.....a thousand other people of varying sizes and weights have slept on that cot. Prepare to either sink between the springs or feel each spring in your back because your mattress is only 2" thick. Some rooms provide an extra hospital bed for the parent but no one has ever slept well on a hospital bed. If you don't mind sleeping in another room from your child, some hospitals have sleeping rooms for parents but I was never comfortable with that. Basically what I am saying is.....don't plan on sleeping much during your stay!

If you are on a budget, avoid the cafeteria as much as possible. Hospital cafeterias are notoriously expensive and seldom is the food as good as you think it will be. Also....avoid the gift shop too. Again....over priced and not worth it. Granted though....as a parent with a child in the hospital, the hours can be tediously long and you as an adult can watch only so much Spongebob. You have to think about your mental state too. It is always good if you think about it to grab a lap top or iPad from home if you can. If not....your trusty smart phone will do in a pinch (but of course you must remember the charger). Hospitals usually have an easy hookup to their Wifi and this at least puts you in touch with the world outside your sanitized hospital walls. It is amazing how things like facebook and Candy Crush can become your best friend during a hospital stay. I also downloaded Kindle on both my phone and iPad. Reading is an amazing distraction to drown out dinging monitors. When your child is sick, it is hard not to focus entirely on them...... and your needs will fall through the cracks. This is why planning ahead is so beneficial.

Yes, I belong to an elite club. A club where any day could end us up in the ER and any ER visit could turn into a hospital stay. Its not fun but you adjust and you learn to make it as comfortable as you can for all involved. Maybe not booty short sleep short comfortable....but comfortable none the less.

Another Speed Bump

So I am typing this from the iPad. Please forgive the typos. Yesterday was another speedbump in our little journey. Even with the VNS (vagal nerve stimulator) on board, David had a major seizure. He was fine and then he wasn't. We were watching tv when it began. It was the third major seizure since
Jan. 21, 2008. It is lucky that my older children seem to have a cool head when I am freaking out and falling apart. Thankfully Z was able to call 911 while I was trying to stop the seizure.....first with Diastat (because I forgot he had the VNS) and then with the VNS magnet. By the time EMS arrived, the seizure had just stopped and David was was limp and exhausted. Time had both stopped and become distorted for me. I knew he was "just" having a seizure but my mind was wildly trying to
figure out "why?" I had no choice but to panic. It's in my DNA. I also had no idea the seizure lasted
8.5 minutes. Thank God Z was there!

As we road to the hospital via ambulance, I know I carried on a lengthy conversation with the driver. What it was about I could not tell you. My focus was on my non moving child and the seizure he just had. As they worked on him in the ER, I was encouraged to see him open his eyes and respond as after his last major seizure it was some 30 hours before he came out of his post seizure fog. My encouraged attitude took a nose dive as David's blood pressure headed south. He was rocking a 102 degree fever....the culprit of his seizure onset and he was very quiet.

Let me say here that the ER nurses were amazing. One in particular I credit for saving his life as she refused to allow the doctor to put off starting his antibiotic. The doctor that was second in command left much to be desired. As David's BP plummeted, the doctor seemed almost cavalier. He said we "might" be looking at an infection. When I asked how low he was going to allow David's BP to drop, he said that he was not a numbers guy. When I asked how long he would let it remain at 61/31, he said he didn't like to put a timetable on things. When I asked what our options were for bringing it up he said there were many starting with large quantaties of IV fluids. Since we were an hour into fluids with no results I was a little curious about our alternatives. They already had him full of fluids and had his bed reclined with his head almost touching the floor. Still the numbers dropped. I was ready to start using my outside voice on a certain doctor! The kicker was when a nurse came in saying that he was going to PICU and that they needed to start a second IV. I asked her what they thought was going on and she said "He's septic! He's critical and that's why he's going to the PICU!" I must have shown the shock I felt as she then questioned whether the doctor had talked to me or not. When I said NO......then she looked shocked and went in search of the ass....errrr.......doctor. He refused to come back in the room. That's okay......I could go to him! Let us just say that when I was finished.....he and I weren't friends anymore!

As I said....thank God for the nurses and especially the one who refused to wait on the antibiotics! Slowly he started to rally. The first sign was on our trip down the hall to nuclear medicine for his shuntagram. He saw a pretty nurse and began saying..."hi!" and then gave a hall echoing "yee haw." I knew he still was far from out of the woods though as he lay very still and very quiet during his procedure......something that would never have happened had he been feeling well.

After the test we were taken to PICU, settled in and then began our wait for test results. David tried his hardest to sleep but it wasn't in the cards. There was too much probing and prodding and people in and out of the room for him to be able to relax. Dr. Shah, his neurologist came in about 1 a.m. and let me know he was not concerned about another seizure but he was going to get to the bottom of what caused his temperature to spike. All we knew for sure at the time was that he did not have a shunt malfunction. More waiting.

Throughout the night as the antibiotics did their thing, his BP rose and became normal. His vitals evened out and he went from critical to good. This morning we found that his throat is red and full of puss pockets. We could be dealing with strep. We are waiting on the cultures. We were told that he would remain in PICU until at least this evening and then move to the peds floor. We will not be
leaving until all blood and urine cultures are back....so we will be here until at least Monday. Luckily we have a private ICU room....a coveted commodity and David is feeling well enough to watch Spongebob the Movie and periodically clap so hard that he sets off his alarms. I would say we are trending up!

Throughout this, I am once again humbled at how blessed we are to have so many wonderful people in our lives. The thoughts, prayers, messages and visits have been amazing and for someone used to doing it alone.....it makes it a lot less lonely.

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!