Shriners PR, VNS and Other Updates

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

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

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

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

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

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

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

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

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

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

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

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

No News is Good News

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

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

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

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

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

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

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

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

Broken Ankle, VNS, Delays and Such.......

My how time slips by. It seems that it was such a short time ago that I was anxiously awaiting our first trip to Shriners Hospital in St. Louis, and now we are well over 12 weeks since the big surgery occurred.  Life has taken many a twist and turn in the last 6 months and there have been many  times when I have second guessed myself or questioned whether the path "I" chose for my son would have been a path he himself would choose if the decision had been his to make? In hindsight....I would say that even with all we have been through and all the information we have gathered and learned since January....I would not hesitate to do it all again.I could definitely skip over the aspirative pneumonia and the self inflicted broken foot....but other than that...... although trying and at times scary.....this journey so far has been a good one.

Did I forget to mention the broken foot? Maybe I did...and in case I did.....the abridged version (as if I can actually condense a story into a short few words) is......about three and half weeks ago...David's right ankle and lower leg began to swell. Knowing that sometimes after surgery (especially when the person is not very mobile) that a blood clot can occur and after conferring with several healthcare professionals who are friends and his doctor.....it was decided (okay....the doctor and I decided) that David needed to go to the ER. Visions of a fresh hell where I once again had to worry whether he was going to make it or suddenly be ripped away from me by yet another freakish situation were all I could think of as I broke land speed records to the hospital. After the usual blood work, x-rays and the dreaded Spongebob Movie......we learned that we were not dealing with a blood clot, but merely a hairline fracture on his ankle bone. WHAT????? Relief along with a sudden understanding of just how this could happen flooded my every pore. David bent his own foot to the point that the bone cracked. I knew just when he did it too. It was during the previous night when I heard him let out a war hoop that set me straight up in bed. At the time....I thought he had just moved badly...but since he grabbed his feet and toes all the time....I knew he had to have pulled it too hard and caused the break. The ER doctor said this was fairly common in kids like David who have undergone this type of surgery. Suddenly they can move in ways they never could before and often hyper extend or in David's case bend their feet until they break. More information that it might have been nice to know ahead of time. Yep....all part of the learning experience.

After the break David was 3 weeks in a boot. Just so happens that because they had to make new orthotics for us at Shriners....they put him in boots as orthotics until his new ones were ready. Luckily that is what they would have put him in for his fractured ankle anyway.....so we were good to go. After the three weeks his ankle seems to have healed okay and we have started the more hard core physical therapy (PT) in which straight legs and weight bearing are the main focus and goal and none of this makes him very happy. The upside is.......that a crucial part of his PT is done in the pool and since David loves the pool more than he loves anyone or anything right now.....this makes all our lives a little easier. Here is where I am going to tell anyone who is thinking about this surgery for their child to understand that the PT part of this journey is the hardest and will cause both you and your child both physical and emotional pain. Those muscles have been cut and mended along with having metal plates in the hips and knees. It hurts to bend the legs and it hurts to straighten them. There is apparently no such thing as a comfortable position and the only thing that even remotely seems to help the pain is to wear the thigh to ankle stabilizers that are hot, a bit itchy and a royal pain to put on. They also tend to cause bruising at the thigh and ankle and rub marks up and down the metal stabilizer strip. They also add about 5-10 lbs to his overall weight and getting him from place to place is not especially fun. Whatever works though....right? The PT (at least in our situation) can cause even more pain than he already has which in turn causes him to lash out (hair pulling, pinching and the occasional decision to take a pretty healthy bite out of whomever is closest). It makes for an extremely tense and exhaustive hour to hour and a half and by the time PT is over.....everyone involved needs a nap! Again though....going with the upside....it all seems to be working and every once in a while we get brief glimses that David is not fighting the PT as much. Although the all out wars with David to get through PT are anything but fun....watching him scream and cry because of real pain or the anticipation of pain is heart wrenching beyond belief and has caused me more than a few tears of my own. I just have to keep telling both him and myself that there will be a light at the end of this long, long tunnel and hopefully someday David will walk making every second of this process worth it!

Again,.....focusing on the positives.....this whole journey has had some very positive effects above and beyond what it has done for David. As a family it has brought us so much closer together and opened my eyes to just how fast time is moving and how much I want to accomplish as a family before Z graduates and steps out into the world. We have done more, laughed more and grown closer as a family unit than we have ever been. I have learned so much about Z and seen him for the young man  that he is turning into. He truly is amazing. I have also watched David change. In some ways this surgery has matured him and though always laid back....now he seems to take just about anything (other than PT) in striide.......and watching his interactions with other kids is tryly amazing.

I too have grown and yes......even matured through this process. I was met head on with my future in a family incident a while back and I realized that that was not who or what I wanted to turn into. Believe me....I made some changes pretty darn quick and almost immediately I saw a change in the world and people around me. Honestly though....none of this would have come to pass if not for Shriner's Hospital giving David the opportunity to walk!

Our latest hurdle or in this case.....non-hurdle has been the fact that David is to get a Vagal Nerve Stimulator or VNS. What this is....is a little device implanted in his chest wall with a little wire with a corkscrew or pig tail end. It wraps around the Vagal nerve without actually disrupting or damaging the nerve. The purpose of this is to basically stop or over ride seizure activity. It sends a charge every time seizure activity is detected and can stop it in its tracks. If however a seizure starts to sneak through....the seizures can be stopped manually by a small magnet being run over the outside of his chest. The hope is that with this VNS that we can both stop his seizures and lessen his medication requirements for seizures. Currently David is on five different medications in differing doses throughout the day to control his seizures. Seizure meds although helping the seizures have awful side effects such as sedation and aggression which in turn can cause the need for more meds to try and counter act those side effects. The counter acting meds in turn have negative side effects of their own which ultimately means more meds and more side effects. It is exhaustive....so hopefully the VNS will help us to cut back on the meds and the side effects and maybe even one day make him both seizure and med free. What a glorious day that would be!!!! At any rate....the surgery to attach the VNS is a one day surgery where we would be in and out. However.....the recovery rate (I am referring to non-pool time recovery) is about 3-4 weeks post surgery. I didn't know this (or let us be more accurate and say....think about this) before scheduling his surgery for next Friday. Suddenly though as we were out in the pool and fighting to get David to kick his legs....it dawned on me that David would lose tremendous pool PT time if he has this surgery next week. Arrrrgggghhhhh! I really wanted this to be out of the way before school started, but not at the risk of losing precious PT time. So we rescheduled. Now surgery will be right after school starts and he will only miss a day....two at the most. Yep...and this is how it goes in our world.

The final blip, change or whatever you want to call it...in this journey has been appointment changes. We were originally scheduled for a followup at Shriners for June 22nd. At this point they wanted David to be standing with his walker and also at this time he would get his new orthotics. However, about 2.5 weeks ago we got a letter in the mail telling us our appointment had been changed to July 27th. I contemplated making the trip anyway to get his orthotics but after calling I found that the orthotics would not be ready until the 27th either. It worked out well though being that David broke his ankle and was no where near being able to stand with his walker yet. Hopefully this extra month will buy us some time and help David be a little more proficient in his PT and with his weight bearing. So basically....all is good.

I know that by now I sound like a broken record....but I just can't thank everyone enough who has helped us to get to this point. Shriners is amazing as are the people (Jill Cook and the Broyles) who introduced me to this wonderful place. If you have a child or know of a child who like my David....wants to walk, please please contact your nearest Shrine or call Shriner's Hospital directly and put that child on the road to a world of endless possibilities. I promise you that you will never be sorry you made that call!

Post Op, Pollen and PT

Okay...so I intended to post sooner than this, but life got in the way. Sounds good....right? Maybe the truth is...I just haven't felt up to posting on this blog. It stirs many emotions when I post here and I have to be in the proper mind set. So where do I begin?

I believe when last I left you....we were headed to MO to visit family and to do our post surgery check up at Shriners. This was a really tough appointment for me as I had so little training after his surgery and I spent a great deal of time worrying that I was doing it all wrong. In fact I think it is pretty safe to say that since David's surgery....I have had almost no complete nights of sleep. Most have been laced with David sitting up and bending forward, whimpering in pain or when he wasn't doing anything....me lying awake....fearing I was doing it all wrong and wondering what I had gotten us all into.

The journey of getting us from David's surgery to this point in retrospect has gone fairly quickly, but in real time....the days were not exactly fun filled. As I had posted there were days when David screamed when I came into the room and I wanted to sit down and bawl myself because we both knew that I was going to be doing something (PT, diaper change or tummy time) that was going to cause him pain. Then we went from real pain to anticipated pain which was almost worse because he would tighten up so much in anticipation of pain that he would cause himself unnecessary pain. David in pain is not a pretty thing. He tends to lash out with a great deal of hair pulling, pinching and even at times biting. A ten minute physical therapy session can often make me feel as if I have been through a very unpleasant battle...complete with the scars to prove it. For the most part though....we simply adjusted our old norm to our new norm and moved along. Still I worried though and panicked time and time again when things didn't seem right or look right to me.....especially when I wasn't even sure what right was at this point. My greatest fear was to go back to Shriners and have them tell me that he hadn't healed properly or that I had done something wrong out of sheer ignorance. That six weeks was truly a hell all on its own.

It didn't help much when just before we were set to leave one of the scars on his knee became infected looking. It is such a catch 22 situation. They tell you to get back to a normal life as soon as possible, but in doing so you run the risk of infection, injury or the parent (me) having a nervous breakdown. I wanted to take David and put him into a bubble and keep him safely tucked away there....but realistically his recovery is a long and slow process and I simply can't hover and make him, myself and all in my hemisphere crazy for the duration of all of this, so I had to do the next best thing. I had to have some faith in myself as a mother. In my world...that is easier said than done.

The trip to MO I decided would be done in two separate legs. Eight hours is a long way to travel under the best of circumstances. When your legs and hips hurt though.....well I just wasn't sure that would work. The first leg of the trip was about 4 hours. We traveled to Columbia and stayed with my aunt and uncle. We had a lovely time and this was where David showed for the first time....his determination in the whole recovery process. He and I were sitting on the front porch in a swing visiting. Suddenly he decided he wanted to get down. I tried to talk him out of it....but he was determined. I put a kindergarten nap mat down and helped when I could as he wiggled himself off the swing and onto the mat...onto his knees. It was at this point that he realized his knees were not the same as they used to be. He let out a yell that could have been heard clear back to KS. I tried to pull him back up into the swing but he was having none of it. He pulled away from me....whimpered and then tried to push himself completely up on his hands and knees. After several tries and several attempts from me to rescue him from his determination and pain....he finally succeeded in balancing on his hands and knees. Once he had achieved his goal, he was then ready to be lifted back onto the swing. It was here that I realized that David....even in his fragile state.....was far stronger and far more determined than even I knew. Perhaps he was setting the stage for what is to come. We shall have to see.

Day two of our trip took us the last four hours to my mother in laws. Although we broke the trip up for his comfort....riding did not seem to bother him in the least. Once there we had to figure out how best to accommodate David. At home he was used to his hospital bed and wheel chair but now we were faced with no hospital bed and quite honestly....I had not really thought sleeping arrangements or even existing arrangements through. All was well though. He was ready to be on the floor and he did fine. In fact it was in no time at all that he learned to manipulate himself around on his tush sliding from room to room. God bless my mother in laws wooden floors. David had a great time and I am sure it did him a lot of good to see faces on a daily basis that weren't mine.

Something apparently happened to both boys and I as we crossed the state line. Suddenly we all began sneezing, coughing and everything that could run....did! I exasperated my own situation by taking advantage of having extra eyes on David and going walking. It is pretty rural there and along the roads everything is in bloom. Apparently that "everything" includes but is not limited to; mold, pollen, ragweed and many other exotic and allergy causing species. I spent the whole time there feeling as if my head would explode. My eyes and nose ran continuously and I switched between coughing and sneezing every night. I am sure I was a pretty horrific mess the entire time I was there. Add to that my good humor because I felt lousy and I am sure I was the life of the party.

On the day of David's appointment to Shriners....my mother in law once again drove. Bless her as I am not a fan of St. Louis traffic and my sister in law came along for the ride. Our appointment was at 10 a.m. and as usual we were taken back immediately. First we were ushered off to x-ray where David not so patiently withstood numerous painfully positioned pictures. Afterwards we were taken to our room where we were once again seen immediately by the Nurse Practitioner and then the PT. After answering all the questions we were suddenly left alone in the room. Ten thirty turned into eleven thirty and soon we were headed into noon and we had yet to see Dr. Keeler. Our patient representative came in and apologized telling us that the doctor was stuck at another hospital doing surgery on a trauma patient. Hearing that and knowing how lucky I was to have David....I could easily forgive the wait. I did however feel very badly for my mother and sister in law who were having to suffer through the wait with us. After taking time for lunch and coming back to the room...there was still no doctor. My mother and sister in law had another stop to make in the city and I sent them on their way. I figured there was no reason for them to have to sit there with us. Finally at about 2:30 Dr. Keeler arrived. I couldn't have been more impressed than when she stopped and went to each patients room and made her apologies before she started making the rounds. She really had nothing to apologize for....and yet she did. Now that is an impressive doctor!!! When she made it to our room...she walked in smiling. David's x-rays showed that his bones have healed beautifully. He was given no restrictions and told to start PT full on. Yay!!!! He was fitted for new braces and given temporary ones and they made him stand with his walker for the first time since before surgery. Of course his legs buckled as he has zero muscle. They also decided that he needed knee supports too...so now he has braces and supports along with still sleeping in his knee braces at night. Dr. Keeler also said..."Get him in the pool! That is the best exercise/therapy he can do!" (Hopefully by Tuesday that will be a possibility...but that is another story for another day!) We didn't end up leaving Shriners until around 4 p.m. and trust me it was a REALLY long day for all involved....but a day that let me know I had done it right and that David was on the way to a full recovery.

The rest of our trip was spent with family. We had a fish fry, learned some new games and had some of the absolute best homemade ice cream I had ever tasted. All in all it was a very positive trip. One we have to make again in about 3 weeks to pick up his new braces and check the progress of his PT. At this point I can pretty much just say the words St. Louis and my car knows the way.

Once home we had to deal with another issue. I think I might have mentioned a while back about one of David's testicles shrinking/disappearing. Well over the last couple of weeks it has gotten much worse so I made an appointment with the pediatrician. He said he didn't think it was necessarily anything to worry about, but he wanted a urologist to see him just to be on the safe side. So Friday we saw the urologist. It was another day of long waits and tests. We found out that yes he has a testicle issue. It is not dead as there is still blood flow and the cause could be one of several things. One could be the fact that when he was in the NICU he had a testicular hernia where they used mesh to fix it. The mesh could have caused a restriction in blood flow causing the shrinkage. Another reason could be a testicular torsion which is suppose to be extremely painful but can cause the same outcome. Finally....it could have been a cutting off of blood flow during surgery. Whatever the case though....he is fine and it will just be something else they watch in the coming years. Another hurdle cleared....and we move on.

Along with our next trip to Shriners and extreme PT, this month we will also see the neurological surgeon to talk to him about putting in the (I can't remember the name of it) but it is the device that fits under the chest wall to help circumvent seizures. If this works....David will not need to be on all the seizure meds he is on and we will no longer have to deal with all of the med side effects either. We are thinking that surgery will likely be in July. I am also sure there will be further trips to Shriners before the summer is out too.

Since we have been home...I still feel pretty bad. This allergy season has hit me hard and because of it, it is makes it a bit difficult to see things with a perky outlook. That being said though....I can't possibly sneeze forever....so soon I should be able to see the world without a headache, but through it all....I have never once forgot how blessed we are to have come this far. The day Shriners was introduced into our lives was one I will never forget and will always be grateful for. Because of Shriners....David may really walk!

About Last Night

What a difference 12 hours makes! We have gone from a doctor saying we would likely be in the hospital until at least Monday (he was the ER doctor), to the floor doctor coming in and saying that the vancomyacin seems to be working well and we can go home today. Of course we got the lecture of: If anything changes go straight to Shriners or St. Louis Childrens (as we will be in MO). And of course he is going to be on another ten days of antibiotics, but other than that...David seems to be his old self. So we are back to our previous "tentative" schedule of leaving tomorrow. Notice at no time did I say "plan". Plan, planning and plans are going to be discarded from my vocabulary both spoken and written and those three words never seem to work out for me!

My exuberant excitement last night over having a "comfy" (more comfortable than mine anyway) bed were nothing but a pipe dream. It does not matter how comfy a bed is....if you can't put it to good use!!!!! By the time David was finally settled in, all meds had been ordered, brought to the floor and given and all blood work and night time preparations were done....it was after 1 a.m. David was so tired he was falling asleep sitting up. I thought "cool....he is drifting off and so can I." Silly girl!!! He was so tired that he was too tired! Immediately he began sitting up, bending forward and trying to sleep with his head between his knees. Time and again I got up to lay him back only for him to pop right back up again. Then he began to whimper. I don't know whether he was hurting, just too tired or simply in a strange place, but he was not comfortable at all. Finally I went over to his bed and laid there with him. Hospital beds are nothing more than glorified twin beds and twin beds were never intended for two people!!!! Especially when one of those people sleeps with his knees extended to the sides in a frog type position. I tried to make the best of it and work around the knees but my back was smashed up against the "mandatory" (David's mandatory not the hospitals) bed rails.

David continued sitting up but finally finagled his body to a position where he could lay his head on my ribs. Funny thing about skinny kids.....even their heads are boney. After about an hour and a half of his head squirming deeper and deeper into my left rib, I could no longer take it. I finally laid him over and then the sitting up began again. Another hour and I was out of there. I gave him his bed back and crawled into my own. Oops...time for middle of the night vitals and IV med changes. The alarm on that med infuser was enough to wake the dead and bring David out of the first sound sleep he had been in all night. So we were back to no sleep and a perfectly good hospital bed that had been laid on...but no blissful sleep had yet to occur on it. The last time I looked at the clock it was 5:45 a.m. My eyes were fully open and awake at 6:00 a.m. I can say next to not sleeping at all....this was the shortest night of my life. In fact....the way I currently feel....I would have been better not to have slept at all. Did I mention that David is happily napping as we speak?

So we are back to our original pla....errr....uh.....schedule. I will go home and do laundry, pack and clean and then as soon as Z takes his last final tomorrow....we will be headed to Missouri. This will be our surgery follow up at Shriners and hopefully we will find out the status of his legs and be able to begin weight bearing again. Since David has progressed so nicely we are mixing business with pleasure and visiting relatives along the way and while we are there. This will also help to break the 8 hour car ride up for David. Family really helps to offset the stress of doctors, hospitals and the unknown.

Again I go back to the fact that I can't get too bent out of shape about anything that is happening in our journey. It all seems to have purpose even if I can't quite put my finger on just what that purpose is at the time. The boys and I are doing well...in fact better than we have in a very long time and yes...I am still happy. Go figure that in all of this mess....I find my bliss/happiness/or whatever this strange feeling is. Do I think we are done with the speed bumps that have become the status quo in our lives? Not by any stretch of the imagination...but more and more I am realizing that whatever is put in our lives.....God gives me what I need to handle it and the blessing continue to abound!

Knee-dless to Say....We Are in the ER Again

It's been a while...but we always knew I would be back. I ALWAYS come back! Things have been good in David's life. He seems to be healing well and he went to school all day....every day for the last week. Friday was his last day as we are planning to leave for St. Louis, Monday morning as soon as Z takes his last final.

Of course...we all know how making "plans" can screw up a perfectly good schedule. I must have forgotten. To back track a bit...I have been trying to do a lot of the inexpensive fun stuff that the kids and I have not had the opportunities or perhaps....actually taken the time to do in the past. Maybe it is because...the last few weeks have been so out of control that I have been desperate to put some normalcy....or control back into our lives. What better way to take control than to have some fun?!

What prompted all of this was....a couple of weeks ago my friend Marni came to town from Texas to help out with David. By the time she got here....David was doing well and we all decided that David's mom needed more help than David did....so Marni, another friend Chris and I all spent the day doing garage sale therapy, shoe therapy and ended the evening by doing friend therapy with several old friends. It was just what the doctor ordered and I realized that through all of this with David....we were actually starting to see the light at the end of the tunnel and it was time to start "living" again. It was then that I quit holding my breath waiting for the other shoe to drop.

Since that time....I have taken the boys to the drive-in (Z had never been and David loved it) and I even went to our little town bar Thursday night and watched Z sing karaoke. We had plans for a return trip to the drive-in last night but Z was not feeling well (the cotton is flying off the cottonwood trees which has him sniffling, snorting and coughing). Today however...Z felt better...so after some cheesecake deliveries....we headed to Ribfest....a new event being held annually in Wichita. Five or six professional bbq outfits from all over the country set up shop and served some delicious ribs, brisket, sausage and chicken. This was accompanied by a few fun booths and live music. Although the wind was near gale force and the temps were in the high 80's....the event was a great time. David didn't seem to enjoy the music like I thought he would but he loved the food. Z on the other hand is not the worlds biggest fan of bbq (although he managed to force himself to polish off half a slab of ribs) but he loved the live music. So what started out to be just a quick stroll through the event, eat some ribs and leave...spread out into a large part of our afternoon.

Once home Z happened to look at David's knee and said..."Mom....you better look at this!" I hate it when he does that. It never turns out well! I looked anyway....and one of David's knee incisions was bright red and swollen about an inch across and an inch and a half long. It was hot and just a bit gushy feeling. Crap!!!!! Something told me I had better not wait to get this looked at as this morning the incision had been neither red nor swollen and had been about half the size it currently was. Again....CRAP!!!!

On the way to the ER I happened to look across at Z and realized that in our extended stay at Ribfest his fair skin had burned to a lobsterish hue. Great....Mother of the Year strikes again. My fair skinned child and me with no sun screen. Yep! I am just good like that! In route to the ER we said our usual prayer...."Please God...don't let there be a lot of people there," and obviously He heard as we walked in to an almost completely empty waiting room. We didn't even have a chance to get paperwork as we were immediately ushered back to the pediatric section and from there....immediately seen by a doctor. ****Cute side note****they saw David coming through the pediatric doors and before we were even in the room...they had Spongebob the Movie playing. Not sure if it is that good to be that well known in the ER!!!! At any rate...this was right at the point that I realized that not only was Z burned....but so was our little David. He had red streaks of burn running up both shins and down both arms. The doctor who already seemed a little worried about the knee became down right alarmed when he saw the red streaking on David's legs. Obviously on the verge of panic......fearing that not only did David have an infection but that it was spreading down his leg....I had to fess up about my Mother of the Year status and admit that I had my poor little post surgery child out in the sun without sun screen for several hours. After getting the raised doctor eyebrow....you could see the color come back into his face as he began telling me how he would like to proceed with David. The fear at this point is that with his new surgery and the plates in his knee, possibly an area around one of the plates has become infected. Best case scenario.....we give it some IV antibiotics and the redness and swelling go away. Worst case scenario.....the area around the hardware is infected and the antibiotics don't work causing them to have to go in and remove the plate(s). In order to decide how to proceed they started with vitals and blood work. At the time he was running about a 100.4 temp but some of this could have been due to our afternoon outing in the sun. On doing the blood work they went ahead and put in an IV site just in case. Once again my motherhood expertise was shown.

David never throws a fit when having his blood drawn or having an IV placed, but today he was having none of it. Apparently his last adventure in the hospital had been quite enough for him and he wasn't suffering either myself or the hospital staff lightly. He put up a fight that would have made Ali proud and in the process of me trying to hold his head to keep him from biting either me or the nurse....my finger nail (which is extremely short might I add) caught him under the eye and caused his glasses to go flying. Now along with everything else...he is sporting a blood stained scrape under his eye. Yeah....I am just good like that. 

Once the blood work came back it showed his white count to be basically normal but some other test was slightly elevated which showed there could be an infection being fought in his system. The doctor was concerned enough with him having a temp along with the red swollen knee to have him admitted and put on IV antibiotics. That's right....we are back to our old friend vancomyacin and our Redman rash.

So now we are in a room on the peds floor and out the window we got to watch a spectacular thunderstorm and lightning show. And I have to ask....is it bad that I am excited to be sleeping on something tonight other than a futon mattress with a hard metal bar under my back? Yeah...that's right.....I have my very own hospital bed. I am a lucky girl. What can I say....I have to find my silver linings where I can!!!!

We are back to waiting. Will the vanco be all that he needs to put him on the mend? Will his knee look better tomorrow? Will we actually be able to leave as planned on Monday or will we still be a guest of casa Wesley? I have no answers. I just hope and pray that whatever is going on resolves itself without surgery so that David can get back to the business of life and walking.

So what have I learned? Continue to take those fun moments and enjoy them. Plans seldom come to fruition and sweating the fact that a plan has changed course and taken your life on a joy ride that isn't particularly joyous is just part of what life is all about. Tonight I will just resign myself to the fact that once again I am not the one in control and be satisfied with the fact that my back won't hurt tomorrow. Until then....night all!

Doing Really Well

As you can tell...I have taken a few days away from the blog. One because I was REALLY busy and two and probably even more important.....David is just doing really well, so there is little to blog about.

Last week I realized that David was starting to get less than amused with his lovely mother. David...while I am sure is still in pain....is more about anticipating the pain right now. It was so bad Monday and Tuesday last week that if I even moved towards him...he began to cry. He was just sure that I was going to change him or put him on his stomach or do something that might cause him pain. So he cried when I even looked in his direction. It was getting a little disheartening for me. I was wondering how this was going to go on as he had cried more in the last couple of weeks than he had cried in the last eleven years.

On talking to Shriners last week, his health care coordinator told me to get him back into school. He is healing nicely, he wants to be up and around and he is down to the occasional  tylenol to keep his pain in check. There was absolutely no reason that school was not possible for him IF the school agreed. Luckily...school missed David as much as David missed them....and agreed that was a good place for him these last few weeks! Good thing as even Spongebob had little entertainment value anymore.

David did Thursday and Friday last week....half days. I think Thursday was a bit rough but Friday went better. This week he will do Monday and Tuesday half days and hopefully be back on full days after that until the end of the year. While I am so happy that he is doing this well...it has really changed things from what I thought they would be to what they really are. Even with our hospital setback when he got the pneumonia...he has done so much better than any of us (even the doctor) ever anticipated. I think David is largely responsible for that!!! He has drive and a fighting spirit that even a difficult surgery and almost dying can't beat down. He is an amazing kid!

So in light of all the new changes....I talked a little to Cassie (my volunteer coordinator) about needing volunteers in the future. My first reaction was to say...I no longer need anyone, but she pointed out that I might still need people from time to time, so I am saying that in large part I will no longer need volunteers on a regular basis, but if anyone is interested....I might need someone from time to time. I will do as Cassie suggested and keep my options open.

This whole adventure has opened my eyes to many things. I have found out a great deal about not only David's strength, but also Z's kindness along with the kindness of countless others. I can never fully thank all those who have reached out to us and have been there for us from prayers right on down to food and volunteering to help with David. It has been amazing and grateful does not begin to cover how I feel about this. Thank you all.

This weekend was a much needed distraction for me. I was able to go watch Z and all the kids sing at Catapalooza. As always they were great and what made it even better is that my dear friend Marni came into town from Texas to spend time with me and she also went to Catapalooza. Saturday I was able to get out and go garage saling thanks to Z being there with David and Saturday night I was able to go out and have fun with friends and just relax (again...thanks to Z). The weekend was so needed and I think David was glad I was anywhere but hovering over him.

Today starts a new chapter. Yeah...I know we have had many chapters of late, but as some one told me not too long ago...the books with the shorter chapters that keep moving steadily  forward.....are usually the more interesting ones. Hmmm....if that is the case...then our story must surely be a doozy!

Thank You Haven House

Well...the last few weeks seem to be catching up with me. Last night I went to bed feeling awful and this morning....not much has changed. Yes...I have tried to sleep! Yes....I eat when I can! And honestly....I am not worrying near as much as I was. Bottom line though.....I am not 20! Shhhh....don't tell anyone! Honestly.....I think my body is just saying......"Whoaaaaa! Slow down a bit!" So that is what I am going to do today. Other than a couple of things I "have" to do....I am doing nothing.

David didn't have an awesome day yesterday. I think he was hurting and although in the past he usually won't tell you where he hurts....yesterday he kept pointing to his feet. He constantly wants to sit doubled forward holding his feet. I am thinking that possibly he is having cramps or charlie horses in his feet. Not sure why as they didn't do anything to his feet, but maybe this is a side effect. At any rate....I will be calling Shriners tomorrow and checking up on this. We are also back to him pulling at his steri strips. I keep hoping they will all just hurry up and dry up and fall off. No such luck though. As they start to dry and unadhere themselves.....David starts to pick at them. So far the ones on his hips have come off fine and the scars are literally works of art. However, the knees have not been so fortunate. David has pulled the strips and caused them to bleed causing scabs. The knees will not be as pretty......but then again.....most little boys end up with scarred knees anyway. At least that is what I keep telling myself.

The weekend has sort of put a snag in our routine and everything has gone sideways. Hopefully if I rest today....then tomorrow we will be back on track. It still feels like life is a little surreal. Maybe in the next week or so....that will all change. As I have said before...it is all about perspective. Maybe a shower will help that perspective along!

So yesterday I talked a little (okay alot) about Shriners and Shriners Hospital St. Louis. Today I am going to talk about another great place in St. Louis.....Haven House. Without Haven House we would have really put everyone in our MO family out when we went for surgery. We had to fly into MO two days early because of the Wings of Hope flight schedule. Had we had to rely on family they would have had to pick us up in Chesterfield....drive us all the way to Bismarck (about an hour), drive us back to St. Louis the next day for blood work, go back to Bismarck, an then have us to Shriners by 9:30 a.m. on the next day for surgery. It would have been a huge amount of driving, gas and inconvenience. Shriners and Haven House made sure this was not the case.

Every time I go to St. Louis...Wichita is put into perspective for me. Although Wichita has predominantly been the biggest city in my hemisphere most of my life, it is nothing but a hamlet compared to the sprawling hugeness of St. Louis. Thank goodness going to Bismarck I only have to outskirt the city or I would constantly be lost. Amongst the hugeness of the city of St. Louis are many huge hospitals and they spread out over the city. Some of these hospitals are specialty hospital where people from all over the country and even the world come for treatment. Because of this....someone was thinking when they came up with Haven House. 

HH from what I was told was originally a children's home. It sits on Olive Blvd. in West County St. Louis. Not unlike Shriners Hospital...it is not ostentatious or fancy. On the contrary it is warm and cozy and gives you the feeling of a home away from home. This is exactly how it is intended to feel. Haven House serves many of the St. Louis area hospitals. It is a place where families can stay who have loved ones in one of the hospitals. Some stays are over night, or a couple of days like ours and then some are much more lengthy. We had the privilege to meet a woman who was from IL and whose husband had had extensive heart surgery. She had been staying at HH for the last six weeks and she told me if not for them and having a home-like place to retreat to every night....she wouldn't have survived this whole ordeal. Amazing!

When you pull up into the circular drive, you see that HH is flanked by restaurants and across the rather (REALLY) busy road looks to be some great shopping. Before you can even step out of your vehicle....there are people coming out to greet you and help you with your bags. Upon entering the building you find a front desk to one side and a cozy sitting area on the other side. They take your information and then you are escorted to your room. HH has two stories. The upper story has several suites with private baths, each room also has tv (the lower rooms do not), and there is a private kitchen and laundry for those staying in the suites. I am sure these are for the more long term guests. On the lower level a hall takes you to a central seating area and doors to the community dining area. Going left or right of this space takes you to two wings on the right and two on the left. Each wing is named after a bird: oriel, robin, etc and each wing has about 6 or 7 rooms. The wings each have a tv room filled with wonderfully over stuffed furniture and a huge tv, a laundry room and a private  fully stocked kitchen. While I did not see any other rooms....ours was wonderful. They all have private baths and our room was big enough that even with all the furniture...David could easily negotiate the room in his wheelchair. Ours had a king size bed and also a twin bed, a huge dresser and mirror, a chest of drawers, a desk and chair and a good size closet. We had no tv, but then again...who cares?! The bathroom too was spacious and fully stocked with shampoo, lotion, etc. The decorations were also wonderful. The beds were covered in beautiful handmade quilts and the rooms themselves felt comfortable and homey.

One of the great things about HH is their extraordinarily good food! Included in your stay is two meals per day (breakfast and supper). There is a little lady that does all the cooking there and she is marvelous. We had chicken breast one night and roast beef the next and it was so so  good. You can eat in the dining room or take a to go tray to your room. If you are late getting back from the hospital (past supper time at 5) then they put your food in a to go box and store it in the frig so you can pick it up and reheat it when you get there. It is just awesome!

Some of the amenities of HH include Wifi, a huge gym which David thoroughly enjoyed, a fully stocked arts and crafts room for kids and families, a kids playroom, a study room with cubicles and a small library, and periodic sitting spaces with tv's for kids and families to enjoy. For being in the city, the views are wonderful and believe it or not...there is wildlife. I saw ducks and geese while we were there and was told by others that they get deer, opossums and the occasional raccoon on the property. It is the best of both worlds....modern convenience with the sense you are just a little bit rural.

One of the nicest things about HH is that even if you drive, once there you can park your car and never have to use it to get back and forth between the hospital. Daily HH offers 4 different shuttle times to the participating hospitals. You have to sign up the day before and the shuttles run at something like 7:30 a.m., 10 a.m., 4 p.m. and 7 p.m., so you can actually leave and spend an entire day with your family member or come home early if you need to. David and I took advantage of the shuttle when he had to have blood work done the day before his surgery. They have friendly drivers that pick you up and bring you back and make navigating a difficult city a breeze. On Wednesday...since David had to be at Shriners at an off hour (not on shuttle schedule) the Moolah Shrine in St. Louis sent us a beautiful and roomy van with a wonderful Shriner and his wife and they shuttled us to the hospital. It was such a relief that I was not doing the driving!!!!

When leaving HH....they ask you to strip your beds, throw away your trash and make sure you get all of your belongings. Again....just like home! You get all of this for I believe it is $30 per night (much cheaper than any hotel and much nicer too). Luckily for us....Shriners picked up this tab, but even if they hadn't we couldn't have stayed (even at a gross place) for that price. It is just a wonderful wonderful place. Are you catching the wonderful theme here?

I believe the one thing about HH is that one of the participating hospitals has to refer you, but if you have a family member staying at one of the hospitals for any period of time....I am sure that would not be an issue. If you are going to Shriners...that is their place of choice.

So as you can see....Shriners and HH do their best to make sure that even the most trying of situations can be faced with care and comfort. Thank you Haven House for all that you did!

Shriners....Not Just a Fez and Parades

When I started writing daily in this blog about David's journey....the reasons behind it were three fold. Reason #1 was to maintain what small piece of sanity I have. Reason #2 was to keep anyone who was interested.....up on David's medical status. Finally....and this was to me....one of the biggest reasons....Reason #3....to educate on all that was going on from beginning to end. I knew that we certainly weren't the only ones who had ever gone through this, but....there wasn't a lot of information out there about this particular journey. So today...I will make this blog a little more informative. Before that though....David is doing well. I worked him like rodeo stock yesterday and today I am not his favorite person. I decided to give the young man a break and allow him some space and a whole lot of Spongebob. Tomorrow though....we will be right back at it!!! Yeehaw!

Okay....David has had cerebral palsy since birth. Other than the words....I knew nothing about CP. To be quite honest....the first couple of years....I ignored the diagnosis. I did the required having Rainbows out and having physical therapy (PT), occupational therapy (OT) and speech but lots of kids for lots of reasons had those therapy's, so you could say that I lived in a bit of denial. As David grew though and started school at 3, his physical issues could no longer be denied. I then put him in the CP clinic here in Wichita and started seeing a pediatric ortho doctor. When he was about 5, his knees began to turn in worse and worse. Someone (have no idea who...possibly a PT) told me that there were surgeries that could be done to fix his knees and his tight hamstrings and give him better mobility. When I discussed this with his ortho doc I was told that the surgery would be too hard on him and that the likelihood of it working was not great, so it was a lot of pain for the possibility of no real result. David was so tiny then and I just couldn't put him through something like that for nothing.

With really good PT David began to improve and the results were amazing. Then the school changed PT's and David began going down hill. His flexibility became worse and worse as did his mobility. A supposed professional for over 20 years was refusing him stretching and believed having him stay in a stander was all the therapy he needed. His walker time was greatly diminished and he was carted everywhere in his wheelchair. I saw him going down hill right before my eyes. When I took him to the ortho he was furious. He told me to get him out of school PT and get him into "real" PT at the hospital two times per week. Needless to say...feathers were ruffled and if you can imagine....SRS was even called on me in retaliation. Luckily the SRS social worker was not stupid and after being invited into my home during a surprise visit she left saying that she saw no case at all and would mark it down as "misinformation"! I have not forgotten then incident....nor will I ever.

After this...this PT was suppose to be out of David's life. He was going to the hospital PT and once again we were making progress. Suddenly one day David refused to have anything to do with the hospital PT. He became hysterical and screamed, hit, bit and did whatever he could to get away from her. I knew she had done nothing to him as I was always there with him. She was as shocked as I was. On returning him to school I told them that he was extremely upset and what had happened. Later that day I received a call explaining that the school PT was "overseeing" him at school and when David wasn't as compliant as she liked....she would get in his face and scream at him. This was stressing him and scaring him and he was connecting all PT with her actions. When I found out I demanded that this woman be gone. I didn't want her around him EVER again. I got our CDDO advocate involved and when the meeting was set...the PT didn't show and I was told that she had resigned(not quite the truth but that is another story for another day). I was good with that and soon David had a new and wonderful PT at school which was awesome as the hospital was not keen on him coming back after his melt down. Understandable.

With the new PT David was progressing once again, but certain things were becoming evident. Even with custom orthotics and a wonderful PT....David's hips and knees were becoming more and more of a concern. His left hip seemed to be thrown as he walked and his poor little knees continued to turn in. Despite this though....the boy could practically run in his walker. He LOVES walking....until he doesn't and then he just sits down! The PT told me to have the ortho look at his legs again this time focusing on the hips and knees. By this time I had a new pediatric ortho. I just didn't agree with much of what the old one said and did and felt we just weren't being proactive enough with David. So I was excited to go to the new ortho. This one saw David several times, watched him walk, took x-rays and told me infatically that David did NOT need surgery. She said with the orthotics and "good" PT he would be as good as he would ever be. I was confused. The PT said no more and life went on with us watching David's hip being thrown more and more and his knees turning in more and more. I honestly thought after talking to two pediatric orthopedic doctors that they knew what they were talking about.

Now in all fairness....these doctors are good doctors but what I know now is that the surgery David had is a tough one. It is done at other hospitals (maybe even here in Wichita...I don't know) but Shriners is the only hospital that has perfected it. So I am not surprised that both of these doctors backed away from the surgery. CP kids are special kids and they need special care...especially orthopedically and I just don't think Wichita has filled that need.

It is about here that David's story gets interesting. My friend Thiry had been laid off from aircraft. She was sick of aircraft and finally decided what she wanted to be when she grew up. She wanted to be an Occupational Therapist Assistant (OTA). So Thiry began her journey which started with school. Lots and lots of school. Although school kept her busy beyond belief.....every once in a great while she and her fellow students would go out and let their hair down a bit. Lucky for me....Thiry decided to invite me a long on one of these social outings. It was here that David's journey began....as I met one of Thiry's fellow OTA's. Funny enough she lived right here in our home town. Jill already knew of David as Thiry had apparently talked about him in her class. So that evening Jill and I talked quite a bit about David. A few days later Jill called me and asked if I would be interested in her dad (who was a Shriner) sponsoring David to go to Shriner's Hospital. I had no words! I mainly had no words because the only visualization of Shriners that came to my  mind at that moment were guys in tassled hats driving little cars and motor scooters in the Old Settlers parade. She went on to tell me that Shriners Hospital specialized in kids like David with CP and that maybe they could help him become more mobile. They weren't just my imagined a fez and parades...and she had me at "specialized in kids with CP"! The wheels were in motion!

Let me say here that Shriners is just not well enough known in my opinion. Of course I had heard of Shriners Hospitals....but for whatever reason....I had always associated them with kids who had been burned. I later found out that they specialize in that too! I could pick a shriners fez out in a crowd but up until Jill's quick tutorial...I had no idea what the Shriner's world was all about nor what Shriner's Hospital was capable of doing.

I also have to say here that it was at this moment that I felt something slap me upside the head and scream loudly in my brain...."Don't pass this opportunity up!!!! This is a bona fide God thing!" It had to be as it started to be like pieces of a jigsaw puzzle coming together.

So let me tell you about what happened from this point. Jill's dad brought me a request of acceptance to Shriners through his sponsorship...which I filled out. It took about 10 minutes and then he came and picked it up from me and got the ball rolling. Within a very short time someone from St. Louis Shriners Hospital called me and asked me tons of questions over the phone. They also faxed me medical releases that I signed and sent back so that they could get David's complete medical history. Going through all of that took a bit of time...but not as much as you might think. They then called me back to let me know that possibly David was not a St. Louis candidate as David has a seizure disorder and St. Louis is really not equipped for such kids. Once I explained the type and frequency of his seizures they obtained more releases to get all of his neurological information. On receiving this and talking with Dr. Shah (David's neurologist) they were comfortable with David being a patient. So finally the day came that I received the call telling me that David had an official appointment date in January. It had been about 6 months since this had all begun and we had about another 3 months to wait but it was worth it to maybe get some answers! I am sure had we not had the seizure issue the time this all transpired might have been less.

Once you have a verified appointment there are decisions to make. Can you drive yourself? Do you need transportation? Once there do you need lodging? Shriners call's you numerous times before your visit to make sure you know where you are going and what you are doing when you get there. The local Shriners (in Wichita The Midian Shrine) then jump into action. If you are driving yourself...you receive a stipened to cover some of the fuel costs. If you don't have a car or can't drive.....the Shriners have vans that will pick you up and take you. Once there....if you don't have lodging, Shriners will set you up at Haven House with little or no cost to the patient. At every turn the Shriners went the extra mile. Because of all of this, before we even began the journey, thanks to Jill....I got to meet her dad Jack, her mom Linda and the lovely lady at the Midian Shrine...Judy! All have been wonderful!

We drove to Shriners on our first visit. My mother in law lives less than an hour away so her house was our lodging and we were able to make our trip multi-purpose. We had our appointment and got to see family too. Upon our visit....like I said in a much earlier blog....I knew we were in a good place. Shriners St. Louis is not a fancy place but it is a comfortable place and from beginning to end you feel as if the staff is truly invested in each and every child that walks through those doors. The first time you are there...it is reminiscent of the CP clinics in Wichita. The difference is....there is no down time and no waiting. From the moment we checked in we had about a five minute wait before we were ushered to the back. In the four hour visit we saw PT, OT, had x-rays and saw the ortho doctor Dr. Keeler. Never did we have to wait for the next one to come in and when we were sent off to x-ray to have a multitude taken....the results were back to the doctor before we were even back to the room. They obviously know the cardinal rule CP KIDS DON'T LIKE TO WAIT!!!!! The very fast paced setting kept David occupied and interested so we didn't have any escape attempts by walker or wheelchair. We were also given the opportunity to sample the hospital cuisine in the cafeteria. Again...nothing fancy....but very delicious and very reasonably priced.

By the time David had been seen by everyone, the x-rays were back and Dr. Keeler was giving me her opinion of Davids prognosis with and without surgery....I was sold. I really didn't know I was sold....but I was. Dr. Keeler I don't think is very old. Maybe in her early 30's. She is all business and pulls no punches. She is not touchy feely and she doesn't say what is easiest for her...nor just what you as a parent want to hear. She lays it all on the line. I appreciated this. When she told me that they would have to turn his hip bones in and put a plate in his left hip, turn his knees out and put four plates around each knee and then cut his femors to help his hamstrings....I could feel a sense of sinking hit me. She also followed this up with...."it is a very painful recovery!" The first words from my mouth were, "will he be able to walk without a walker?" Her answer was a definitive..."No!" But she followed it up with the fact that he would be extremely proficient on the walker and much more independent. The prognosis without the surgery would be that his hips would degenerate to the point that he would be in constant pain and eventually not be able to walk because of the pain, nor ever be comfortable sitting or standing. With all the information on the table...the choice was mine. She said she would let me think about it and to let the hospital know what I wanted to do after I decided. Before I even knew what was coming out of my mouth...I had grabbed her arm and said "We're going to do it!" Remember that God thing I told you about? Yeah...cause I have no idea that I had already decided.

I pretty much spent the rest of the day feeling as if my heart was in my stomach. I knew I had just put in motion something that was going to change our lives forever.....especially since after going to two doctors in Wichita and being told that surgery really wasn't an option/necessary I was sort of expecting a similar prognosis from Dr. Keeler. Boy was I in over my head!!! Funny thing too....she said that David should have had this surgery when he was four! Yeee gads!!! I never wanted to kick two doctors so badly in all my life! Why hadn't I known about Shriners seven years ago????

Once home we waited for a call from Shriners setting us up with a hospital date. Within the week we had one. It was April 11th. That same day I found out that I no longer had a job. Darn this economy. I was stunned but not the least bit upset. Something told me things would be okay and for the first time I think in my entire life....I was quite aware that I was NOT in charge. Heck...I obviously didn't even have a say as to the direction our lives were headed in. Kind of a weird place for a self-proclaimed control freak to find herself in!!!!

It turned out to be an extreme blessing that I was unemployed because the next few months I never worked harder in my life. Cheesecakes for David was the brainchild of mine that I thought up after someone said they wanted to do a benefit for us. I couldn't get my head around people just giving us money for no reason...but I was okay with them paying for a product. Cheesecakes for David took off beyond my wildest expectations and I was up to my eyeballs in cream cheese and sugar. In between times I was in constant touch with Shriners Hospital as well as the Midian here in Wichita. I had talked to a couple of people who had been down this road and who encouraged me on the way. Everyone with experience had told me that the journey was a difficult one but the destination was well worth the journey. I prayed they were right.

Originally we had been told that David would likely be casted after his surgery and that his legs would be fragile. That mixed with all the pain he would be feeling had me nervous. How was I going to get this poor child home in my van? I just knew he could not withstand an 8 hour trip in his condition. It was at this time I started checking and sure enough....Shriner's has an answer for everything. Between Judy at Midian and April at St. Louis and a new player named Sandy....before I knew it, our problem was solved. For cases such as David's, Shriners uses a group out of St. Louis (actually out of Chesterfield I believe) called Wings of Hope. Wings of Hope was set up to fly us to and from St. Louis so that David could fly home as comfortably as possible. Along with my constant communication with Midian and St. Louis, I was also talking pretty frequently with Sandy at Wings.

Now here is a little FYI for anyone whose child is about to undergo this surgery or a similar surgery at Shriners. As soon as you can, before the surgery....start getting things into place. Things you will likely need will be a special wheelchair, possibly a hospital bed and there is also a good chance you will need some kind of home health care and also PT. All of these things have got to be okayed by your insurance company and the doctors have to write scripts for all of them. A heads up on this is that the wording on those scripts has to be just so so or the insurance company finds it extremely easy to deny them. Shriners Hospital provides you with a personal social worker and the whole time David was there she was trying her darndest to get things in place with insurance denial after insurance denial. The only thing insurance readily accepted was for the wheelchair. Our little social worker even worked it so that we could get the chair through a Wichita company and have it delivered before we got home. As for the bed, the home healthcare and the PT....I had started working on those before Davids surgery with our advocate through the CDDO. With no luck before we left I was hoping things would work out while we were there. Our little social worker tried but no cigar. To the rescue....the Midian Shrine and their wonderful Judy stepped in. I knew that we could not bring David home without a hospital bed and not only did she get us a hospital bed, but bedding too. It was here when we got home so all we had to do was bring David in and put him in it! Home healthcare is still a bit elusive but I think I have found some ways around it....and David is actually getting to the point that we really aren't going to need it. PT will be our next hurdle and that will come after his next visit.

Once Wings of Hope flew us to St. Louis, Shriners had us set up in Haven House. It was a beautiful, comfortable place that we stayed at the two days prior to our check in at Shriners Hospital. When we checked in at the hospital....once again I was so impressed. Everything was so efficient and every doctor, resident and nurse introduced themselves and let us know what part they would play in David's surgery and recovery. Hearing the actual names for David's surgery's made me a bit queasy "Bilateral Verus Osteotomy", "Left Bega Procedure" and "Bilateral Adductor Tenatomy"....but I was assured time and again that Shriners were beyond experts in these surgery's. Even our own doctors here in Wichita confirmed this.

During surgery (five hours worth) we were called hourly in the waiting room with updates. After the surgery David was taken care of in the post op recovery over night. It was one on one nursing care where at least one and sometimes two nurses were at his side all night. When moved to the floor, the nurses were attentive and right outside the door at all times. The rooms were in a circle around the nurses station and a nurse could always see in the room. Along with patient care....Shriners also practices parent care which is a necessity since some of the kids are there for weeks at a time. Parents can stay in the rooms with the kids and there is laundry and parent rooms on site also.

When the Shriners staff realized that David was going into crisis (*****this had nothing to do with his surgery*****) and they knew he needed care that they couldn't facilitate.....they immediately had him taken by ambulance to St. Louis Children's. I will be forever grateful to Shriners for making that call and keeping egos out of it. With their watchful eye and amazing care....they saw to it that David was given the absolute best care possible both in and out of their hospital.

Even while we finished our stay at St. Louis Children's, Shriners called to check up daily. I heard from out little social worker Kimberly, Sandy from Wings and also April our care coordinator. I also hear from Judy at Midian who worked tirelessly to make sure that everything was ready for us when we got home. She even made sure that David would be picked up from the airport in Wichita by ambulance so that his vitals could be monitored and his trip to our house would be comfortable. It was amazing!

Now that we are home and I have had time to process this who leg of our journey....I have to say that it has been an impressive ride. Yes...there have been hitches and scares....none of them having a thing to do with Shriners Hospital or the care we got there and my hair is a little grayer now than it was when we started, but if I had to do it all over again....I would in a heartbeat. We are scheduled to go back May 25th (we will be driving this time) and I know that we will have many more trips to St. Louis in our future. I am good with this because I have seen from start to finish that Shriners truly do care and Shriners Hospital is an amazing place. Thank you all for all you did!!!!

If you have a child like David with CP or ortho problems and you think Shriners might be able to help them....find yourself a Shriner and get your child sponsored. Can't find a Shriner? Contact me and I will help you or you can call your local Shrine or Shriners Hospital directly. Your child....like mine deserves the chance to be as mobile and independent as possible and you and Shriners can give them that...so give them a call today! Shriners Hospital St. Louis!

Breathing Makes Everything Better

It is one of those perfect days when storms and rain are in the forecast pretty much all day. It is not going to be particularly cool...but the rain and storms make up for it. As I type it is raining and thundering and for the most part....all is darn near perfect in my world right now.

Last night I breathed my first comfortable breath in a couple of weeks. David did exceptionally well yesterday and I think I finally saw through others eyes just how well he is doing. In the last 48 hours....David has only had pain meds twice and one of those was plain tylenol. In light of that....yesterday he did 20 minutes of the dreaded tummy time, he spent several hours in his wheelchair and he actively worked with his speech therapist for almost two hours. His mood was great and only during tummy time and then again when getting him ready for bed last night were there any tears. What I am seeing though is amazing. Before Davids surgery his flexibility was very slim and his feet were always a purplish blue and cool to the touch. They had always been this way and when he sat in his wheelchair for a while or sat at the table for meals his feet would turn completely blue. His foot circulation was horrid. Since his surgery though....his feet are always warm and they stay a beautiful pink. It is amazing and everyone who knows David can't believe the change. His flexibility though is what impresses me. Before the surgery David really did little bending at the waste...now though.....being bent double seems to be his position of choice. He can sit in bed or in his wheelchair and bed completely over resting his head on his knees. I would kill for that kind of flexibility! His back and hip muscles are still pretty tight and painful but with all the tummy time....I am hoping that soon he will be able to arch his back and bring himself up with his arms. He has never been able to do this, but maybe now!

His speech therapist was very impressed with him yesterday. She said she couldn't remember when he had seemed as happy and relaxed as he was while she was here. He was very cooperative and he played and learned as I said....for the better part of two hours. The reality is we are only 16 days out from his surgery and he has made tremendous leaps and bounds even being held back a week with his extended hospital stay from pneumonia. Daily he fights through his pain and plays and laughs with the best of 'em! I am so proud of him and so grateful to Shriners and Dr. Keeler for getting him to this point.

Last night we may have found something that will help to keep him from getting leg sores. It was so simple....I just put long sweat pants on him. They acted as a barrier between him and his splints. This morning his legs looked much better. Luckily he has lots of sweat pants so maybe we are onto something.

Yes....breathing is good. I also feel a huge weight lifted off me knowing that there is money coming in again to help offset extra costs. Thanks to KEYN and also to people who have been patiently waiting for me to start baking again....there are cheesecakes again!!!!! I am thrilled to both be busy and also to be contributing to our finances again. It makes me feel whole and like I am taking care of my family. I have to say...that is a good feeling.

I can't believe that it is almost May! I really can't believe that it isn't even May and I already have had to have my air conditioning on. If David sweats at all he starts breaking out in heat rash and right now we don't need to be complicating any current situations so the air it is. This means my electric bill will sky rocket from the low $200's to the high $400's in a very short time. Another reason I am beyond grateful for the cheesecakes...they will make surviving the summer affordable. And thanks to a KEYN listener....I won't have to worry about mowing my yard this year (lawn mowers hate us in the best of years). He called me yesterday and told me he had a lawn service and although he didn't care for cheesecake...he would like to help....so he is taking care of my lawn this summer. I nearly cried as this is not a job I really thought about....but something that is so terribly necessary. Thank you Grizzly Bears Unlimited! You are awesome.

Well....David is enjoying this rainy morning and decided to take a nap. The temptation to join him is incredible....but I hear my kitchen calling me. Perhaps both mentally (for me) and physically (for David) things have turned the corner. Before long we will be back in St. Louis and hopefully get the "weight baring" okay and then Davids real work will begin. Good, bad or indifferent...this journey thus far has been amazing and I can't wait to see just how far or how wonderful it will turn out to be. And what have I learned so far???? Breathing makes everything better!

Blessed

I know over the years during the beginning of Lent Father always gives a talk about when someone comes up and asks us how we are doing....our response should always be "I am blessed!" Well I truly am! When I look around and take stock of my wonderful friends, family and the awesome people that reside with me in my home town....I absolutely could not consider myself anything but blessed. Add to all of this the new friends that David has brought to our lives and we are so beyond blessed it isn't even funny. In case I don't say it enough....."thank you" to all who have volunteered, prayed, talked me through paranoia and crisis, brought us food and who are like me......waiting to see David be the most independent that he can be. I am of the firm belief that angels walk this earth and I have had the privilege to meet quite a few of them.

This is such an interesting journey we are on. I know that it is full of a lifetimes worth of life lessons. Some days are good, some days are not so good but all days are a blessing...especially in light of the fact that we could so easily have lost David a couple of weeks ago. Today seems to be a good day. Yesterday wasn't too bad either. I got some peace of mind after going to the doctor and I also got some things in motion to possibly get home health care and also to get David something called "bunny boots" to help keep his ankles free from bed sores.

We made some awesome progress in moving David yesterday. His wheelchair transitions are getting so much easier and he is now starting to do some of his own transferring. While the pain is still obvious it is also obvious that he is trying hard to work his way through it. His upper body is so strong that he is learning to adjust himself in bed, in the wheelchair, etc to be comfortable. The only part of our day that is still HELL is tummy time. He hates tummy time with a passion and yet when we do it regularly (2x per day 15 min. each time) his pain seems to be less the next day. He had his first outing yesterday...albeit was only to the doctors office, but we figured out how to have him ride comfortably in the car and he really seemed to enjoy himself. He was very happy being outside and I'm sure simply being out of the house. I must admit it.....I enjoyed it too.

David was visited yesterday by an old friend of mine and David thoroughly enjoyed making a new friend. We also were blessed to have David's para from the school Niki volunteer some time yesterday evening which gave me some cheesecake baking time. All in all the day was a good one. The only down side was finding that I had $500 missing from my purse last night. I had every intention of taking it to the bank yesterday but after having David out at the doctors for awhile I decided that going straight home was our best bet. I figured that since I had an appointment today that I could just run by the bank on  my way. When I was preparing stuff last night for today I realized it was gone along with a $25 VISA gift card that I had been given. I have no idea when or where this took place but since I was the only one who even knew I had the money and where it was I simply just don't know what happened. At first I was literally sick and then I just thought that if someone went to the trouble of stealing it that they must have needed it far worse than I do. As disheartening as it was....we will survive and there are just too many other things to be grateful for. I refuse to let this one thing overshadow my blessings.

This morning my day started with David appearing to be in very little pain as we rolled him around getting him ready for the day. Then my phone rang. It was local dj's Don and Kim from KEYN asking if they could do a short interview about David. Of course I said "of course" and since I have had some wonderful phone calls. I can't thank these guys enough along with "whoever" got this ball rolling. I have had several orders along with an offer if I get too busy to use my own kitchen I can use their professional kitchen. Yes folks.....we are BLESSED and I will be the first one to admit it!