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!