Having and Helping a Child with Cerebral Palsy

One of the things I have been asked a lot over the years is, since I have a child with cerebral palsy, what I think is the most important thing a parent can do for the child's care so that they can thrive as much as possible. It's a great question and here are my thoughts.

First of all, let me say that CP is not a one size fits all illness. It effects different kids in different ways. Some it effects their upper extremities more, some their lower and some are equally effected all over. It weakens the muscles and either causes no tone or too much tone. Because of this, my recommendation to anyone who asks is, from the beginning get your child the best orthopedic specialist, the best neurologist and the best physical therapist you can find from day one. In some more remote areas, finding these top notch specialist may mean traveling and if that is the case, then I strongly suggest looking into a Shriner's Hospitals. Shriner's Hospitals are for kids and for specialty issues such as CP and the doctors at these hospitals are the best of the best. Shriner's also works with insurance if you have it, but if you don't, they foot the bill whether it is for therapy, examinations, surgeries, orthotics or anything that your child might need to give him/her the best outcome possible.

Let me stress to you that the sooner you get your CP child into a good ortho doc, the better. Immediately, even in infancy, they can start checking your child's tone, bones and movements and keep track of them as they progress through therapy, so if they find surgery to be necessary, they are on top of it. The second important thing....get in with a good PT as soon as possible. Even as a tiny baby, a physical therapist can start working with your child and help them to build muscle and work on their tone. Most PT's can now also cast children for orthotics and help provide them with any assistive equipment they need right from the start. Let's also not forget the neurologists part in all of this. Most CP kids do end up with some neurological deficits and like David, they have secondary issues to their CP, like Hydrocephalus and seizures. These require close follow ups with a neurologists. On down the line, the neurologists can also help with muscle issues too, such as Botox injections which help with tone and movement.

I can't emphasize  enough how important getting your CP child followed by these docs and working with a PT are. These will be key to how well your child progresses as they grow and how much mobility they have.

As your child goes to school, if it is a mainstream public school, you will find that most offer minimal therapies such as PT, OT(occupational therapy) and Speech as well as special education classes geared towards kids that are not in the mainstream. My suggestion here is that you seek therapies outside of the school district. Ideally, you can get a school PT that will work well with an outside PT, but seldom does this happen. One of the problems is that in a school setting, your child only gets about 15-20 minutes of PT every week to two weeks at school. This is not enough for a child that has severe issues and needs to be seen much more than this. If the school PT works with the outside PT, the outside PT usually sets up the therapy plan and the school PT makes sure that it is followed at the school level. In David's case, this didn't happen and we finally just went to outside PT. It has been a much better situation for him and he has become much more mobile since we have gone outside.

Another thing I feel that is so important is surgeries. I know that it is terrifying as a parent to think of your little one having surgery, especially if it is a long one with a long recovery period. Let me just say here though, that as scary as the knee and hip surgeries can be, the earlier they are done, the better chance your child has at moving around and even walking. We waited until David was 12 and that was almost too late. We didn't have a great ortho doc at the time and he didn't believe in surgery on kids unless it was a last resort. We finally found our way to Shriner's Hospital in St. Louis and from that day, David's life changed. His mobility would likely have been so much greater had he had surgery at 4 or 5 instead of at 12, however I am beyond grateful for the mobility that he does have.

Finally, let me say that any doctor or therapist you choose, should be a good fit for both your child and you. Do your homework and ask around. Other CP mom's in your area are a great resource for these kinds of things. If for any reason your child doesn't work well with a PT or you don't feel that your child is progressing well, it is not only your choice to change providers but also your duty to your child. The same goes for docs. If you or your child aren't comfortable with a doc or you don't feel like you are getting his or her best efforts with your child, then change. These docs and therapists are going to be with your child for a long time to come and you want the relationship to be one of confidence and trust.

Cerebral Palsy, though chronic, can be improved on greatly with the right therapies and the right medical professionals guiding your child's treatment. Every day new therapies, new medical advances and new possibilities are changing the lives of CP kids and their families all over the country.

When starting out as a CP parent, don't be afraid. Remember that from this day forward, you are your child's greatest resource and his or her greatest advocate. Never be afraid to question or change a doctor or therapist and when you find good ones.....listen, learn and soak up every bit of knowledge you can. This will give your CP kid the best chance for the greatest life possible. And that folks is my advice to you.

Until next time.......

Cerebral Palsy Month, Surgery, Updates and Dates...Oh My!

Well, it is 4:30 a.m. and I can't sleep, so I guess it's a good time for a blog!

March has been cerebral palsy month and I guess it is fitting that all this chaos has fallen right smack dab during this month. It is a reminder of why I fight and who I fight for and the constant knowledge that I will never quit fighting.

I know it is crazy, but this whole eviction situation has had so many blessings connected with it. Yes, I have been a walking basket case and lost lots of sleep and eaten my feelings like crazy, but there have been some really great things come about during all of this. First and foremost....I have always known how great David was as a human being and how much I love this kid, but it has been so amazing to see how much others love him too. To see our community, church, family, friends and even complete strangers fight for my kid has had a profound affect on me. With all the negative in the world, these last weeks...I have been given a direct and clear view of the good, the kindness and the generosity of so many amazing people. It has made me even more determined to be the best human I can be going forward and to never let a day go by that I don't find some way to pay forward what has been given my son and as an extension me. I am so far beyond grateful, no one will ever know.

One of the other amazing gifts that this situation has given me is the fact that I have had little time to fixate on David's upcoming surgery. Had this house not taken over my every thought awake or asleep, it is quite possible I would have still been a basket case, but for a whole different reason.

David's surgery's make me crazy. Especially the long ones. I have seen the scary side to these things and I have found myself more than once at his bedside praying that he and I were not sharing our last moments together. I have been told that he is beyond critical and given pretty grim odds at his recovery in the past and in most cases I have sat there all alone, just him and I.... facing the unknown with every second counting. I am no stranger to any of it, so you can probably understand why the weeks, days and hours leading up to a big surgery....especially a potentially life altering surgery such as this...cause me great stress and a lot of worry and over-thinking about the "what ifs." This time though, there has been little time for any of that. I guess I have just had faith that he would be fine before, during and after the surgery. My focus has been that post surgery he would have his home to come home to and that other than the surgery, his world would sustain no more disruption or stress.

Now that we are so close to saving David's home and with the realization that his surgery is less than two weeks away, some of the realities and possibilities of this surgery are starting to creep in and yes....there is a bit of worry involved. I believe this maybe why I am blogging at this hour instead of sleeping.

This surgery is kind of a crap shoot from beginning to end as far as time under anesthetic, time in PICU and time in the hospital, not to mention actual healing and recovery time. I have spoken to literally dozens of people including his PT, his surgeon, his surgeons PA and actual spine fusion patients and all literally give you different times frames about everything. So what I have deducted is that this surgery and recovery largely depends on David and the doctors. The actual surgery itself  of course is dependent upon the skill of the surgeons and what they find going in. Luckily David's surgery is the first of their day (at 7 a.m.) so both surgeons should be fresh and on their game. The recovery though, that is all David. From experience I know that he has extreme determination, so hopefully he will push through and push himself to be on the quicker end of recovery, however.....whatever the case ends up being.....we are both in it for the long haul.

Soon, my worry roles will be reversed and I will have no time to worry or think about anything other than David. His surgery and recovery will take center stage and all else will have to take a back seat. That is where faith steps in and everything from the house to the surgery is put in God's hands and left there. Thank God we were given the extra time necessary to make everything happen (we now have until June 30th) and thank God for all the prayers that have helped us along the way.

So, these next couple of weeks I have no doubt, will fly by. As usual with his big surgeries, I will do my best to keep people updated on his surgery and his recovery process through this blog. David will be at Wesley Medical Center, 550 N. Hillside, Wichita, KS 67214. As soon as we have a room number I will let you know, so if you would like to send David a card, I know he would truly appreciate it. You can also send them to our home and if you would like that address please message me and I will give it to you.

This is a life changing time for David and I, but the journey has been full of amazing insight and even more amazing people. I am grateful to you all and I ask that you continue to pray for David and for his upcoming surgery. Prayer has been the greatest gift of all and we are grateful for every single one.

Finally, I was asked to post our fundraiser and donation information on his blog again so here it is. There will be a Quartermania Fundraiser on April 8th from 1:30 p.m. until 4:30 p.m. at Haysville West Middle School, 1956 W. Grande Ave, Haysville, KS. 

That same day from 5 p.m. to 7 p.m. there will be a bierock casserole dinner at Lauries Kitchen, 113 W. Main, Mulvane, KS. You can also pre-order the casserole by the 1/2 pan or pan and pickup on the day of the event.

And finally there will be a 20% fundraiser at Hurricane Sports Grill at 8641 W. 13th St. N, Suite 111, Wichita, KS on April 13th from 11 a.m. to 11 p.m. Twenty percent of all your food purchases will go to Save David's Home when you bring in a flyer or show a picture of the flyer on your phone.

Donations can be made through the YouCaring fund or you can donate through Carson Bank, P.O. Box 158, Mulvane, KS 67110. 

So there you have it. As I said, I will be posting daily updates on David's surgery and recovery and for those interested....his surgery will be April 10th. Please keep those prayers coming. 

A New Year....A New David Blog!

Yes, I know....it has been eons since there was a David update. My bad. No truly.....my bad! I have redirected my efforts on life and because of that, blogging was kind of left out in the cold. I hope to be better in 2017, but I make no promises as I plan on being very busy off-line...so we shall see.

So what is David up to? Well, he is nearly as tall as I am. By most human standards, I am short but for David, he has grown leaps and bounds. He turned 16 in September and he started to school four days per week at the high school back in August. This was extraordinary, as if you remember last school year, Davids seizures were getting a little out of control and scary and he had to be taken out of school for several months. When he did go back in February 2016, he went back to a four day schedule, taking Friday's off as that was his therapy day at Heartspring.

Through the summer, David gained a lot of strength and his seizures became almost non-existent. His meds and his vagal nerve stimulator (VNS) were keeping them well controlled. He was also getting much stronger with his walker and his bike. It was the first time in many years that we were able to feel some kind of normal as a family.

When school started in August, God was obviously answering prayers as we were blessed with the most amazing teacher for David. She actively volunteered to go to his out of school physical therapy both during the summer and during school. She attentively listened to everything his PT (physical therapist) said and went back to school and implemented every detail into his school life. Because of this, David went from being mostly wheelchair bound during school to walking most of his day with his walker and without wheelchair assistance.

This school year has been one of the best David has ever had. Until November, he had missed almost no school and was doing absolutely wonderful. In November and December, he had a few seizure issues (mostly from a growth spurt and out growing the therapeutic levels of his meds) and he caught a couple of bugs that were running around the school, but all in all.....his first semester was nothing short of a miracle as far as school years go.

One thing that both was amazing and terrifying all at once for me,  was the fact that in December, his PT told us that December would be his last PT for awhile. When she told me, I could literally feel my heart almost stop. I had no idea how much "I" had emotionally come to rely on his weekly therapy with her and how much she had become my compass on how he was doing physically and how I was doing as his mother. Sound silly? Trust me, when you have a special needs child, you get your reassurance whenever and wherever you can. Although his no longer going to PT (for awhile anyway) felt like a gut punch to me, for him it was an amazing thing. This meant that all of the goals she had set for him....he had met. As she explained it to me while I hyperventilated.....he had gone as far as he could at his current strength level. In order for insurance not to come in and control his therapy now that he had met his goals, she was voluntarily backing off his therapy so that if for some reason he had a set back, he could get right back in. However, if she didn't back off now, insurance would likely mandate that he couldn't be seen again for a year and if he would happen to need PT in that year....he would be out of luck. This way too, we have a whole new semester (few months) to work on his strength both at home and at school. As his strength grows and at the rate he is going....by May or June he can be re-evaluated and if he is ready, a whole new set of goals can be set such as climbing stairs, standing up with the help of only one hand or even possibly taking steps on his own without walker assistance. Then he can return to PT.

I know it is an amazing thing that he has made it so far and continues to progress, but looking at this new year without regular, weekly PT is still a bit terrifying to me. She assured me however, that I can handle this. I hope she is right...and because we will not be going to PT on Fridays....David will now be back in school on a Monday through Friday schedule. Routine is a wonderful thing for him, but I have to admit that I will miss our late mornings on Fridays and not feeling rushed to be out the door. However....it is a small price to pay to see David happy, healthy and progressing.

Christmas break has been a good one this year. As usual we have all passed multiple bugs back and forth and because our house has been fuller this year than normal, there seem to have been more bugs than ever before, but through it all, David has stayed pretty healthy.

Now that the new year is here, my work is really laid out for me. Since we won't have weekly PT, we have much that must be done to strengthen him both at home and at school. He will actually go from 1 hour once a week to at least 30 minutes every day. He will have to keep up with his walking and it was even suggested that with some of the strengthening he needs both upper and lower body, that perhaps I look into a gym membership for him. We will see if that is even possible.

Yes, I am feeling a bit overwhelmed but in our world right now, things are fine. We are blessed to have all that we have and David continues to be a trouper, fighting a condition every day that would crumble even the strongest of most of us.

So there you have it. We are starting the new year on a positive note and hope to maintain the boring monotony that is currently our lives for a long time to come. And perhaps....this all will give me a little more time for writing the occasional update more often. Who knows....only time will tell. 

A Truly Amazing Life

Life in Davidtopia is very busy right now. He has physical therapy (PT) two times per week and water PT once a week. We are up before daylight to get him to the west side for his PT's and as always, there are hiccups with insurance, but he likes his therapy and so far, he seems to be gaining from it.

For those of you who may be just tuning in, David has cerebral palsy (CP). His particular type of CP was brought on by a premature birth which resulted in a grade 4 brain bleed and a host of other issues. His CP is both physical and mental, with the physical part affecting his lower extremities (hips, legs, ankles) much more than his upper body. Early on he was little and light and he walked really well with a walker, despite the tightness in his muscles. As he grew though, he began to have issues holding his own weight up and being able to have stability on his feet. When he was 12 years old, we learned about Shriners Hospital in St. Louis and David was sponsored by a local Shriner to go and get checked out. There we learned that Davids hips were really bad and that not "if" but "when" his hips gave out, he would be in constant pain for the rest of his life. The only thing to be done was a long and painful surgery to repair the hips and also to fix the muscles in his legs and knees. Everlasting pain vs. surgery? It was a no-brainer. He had the surgery. Unfortunately, the surgery over corrected the problem and within a year, he had a new problem. He couldn't even stand because his hips had spread out to the point that his feet crisscrossed. Strengthening PT was impossible because he simply couldn't stand. Now, nine almost ten months ago, David had the hip surgery again. This time they pulled the hips back to center. In April, he stood with straight legs for the very first time ever. In September, he was okayed for intense PT, as his hips had healed and his bones had strengthened to the point where he wouldn't hurt himself. And now you are up to speed!

David has the desire and the drive to walk, now he just needs the strength and as far as PT goes, we still have mountains to climb. What is the saying...."You have to crawl before you walk and walk before you run." Well David is literally at the crawling stage. Now he is working on the walking. He is working on strengthening his legs, hips and his entire core. Even though his upper body is a thousand times better than his lower body, as he grows, there is more of him to support and the surgeries have weakened his upper body a bit. He is working to regain that strength and move forward. At PT, he works on supporting himself and doing fun things like playing ball, kicking the ball and reaching for things. He also constantly works on sitting/standing which for you and I would be similar to squats. The sit/stands help to build muscle and prepare him for walking.

The pool therapy is an amazing strengthening tool as he is constantly kicking in the water to keep himself moving. On his own in our pool he started getting stronger just being out there playing. It is because of the pool that he started kicking outside the pool. Before that, he couldn't lift his own legs to kick. With the targeted pool therapy, I am hoping that the change will be amazing.

When not at PT, David does daily routines at school of sitting on an exercise ball to learn trunk control and strengthen his core as well as he does stretches to keep his muscles in shape so he doesn't lose anything. He can actually take off and walk with his walker, but because the strength isn't there yet, he tires easily and his muscles will begin to shake. Sometimes it is hard to watch, but then I put it into the perspective that David is like an athlete training for a marathon. There is a lot of hard work, pain and effort that goes into that training, but when the finish line is crossed, it is worth every second of that painful journey. I feel that when David crosses the finish line, we aren't going to remember the surgeries, the long and hard recoveries, the sleepless nights, the pain or the endless PT. All he or I will be thinking about is that he did it!!!! He is walking!!!! It will all have been worth it for both of us.

And speaking of growing.....David turned 14 years old on Sunday. He is about 4'8" tall and he weighs about 80 lbs and he is all teenage boy. He got several gifts, mostly cars as he is in love with cars, but his favorite gifts were the Mylar balloons he got. Three guesses why. They have Spongebob on them of course. So far they are holding up under his constant handling but I fear they are not long for this world.

Life continues on here in our humble abode. We keep doing our best to move forward and kicking the obstacles out of the way and so far, David appears to be on track...... for a truly amazing life. 

David Has Definitely Got This!

Well it has been quite a summer here so far. Someone posted on facebook the other day that there was only about five or six weeks left before school starts and I couldn't help but wonder where the summer had gone. Then I remembered! This summer has been ALL about the Incredible Mr. David!

Sunday was Davids first time swimming in his new pool and getting into it from his new deck. This project has been a labor of love by many people from both behind the scenes and hands on. For the entire summer in the evenings and on weekends when weather and work schedules permitted, my backyard has been transformed from a broken down pool, falling down deck and uneven back yard with drainage problems, to new pool, new deck and a level playing field to promote a fun place to hang out with good drainage.

With the pool being completed, there is just finishing touches left on the deck, the moving of the electrical power to the pool and one more go around with the tractor to ensure my yard is as even as possible. After that my devoted workers who have volunteered their summer to this project will get to hang up their tool belts and actually get to spend quality time with their own families again. Still, there is much left to be done to truly make this "David's" as well as the families space. I hope to complete our simple yet amazing fire pit and patio by the weekend as well as Saturday afternoon family and friends will be coming over to make individual paver stones dedicated to and for David, that will go from the patio to the deck steps. I am also putting together a movie screen made from pvc pipe and a sheet so that David can watch his favorite movies in the evenings while we hang outdoors as a family with a movie projector that was given to us by someone who no longer used it.  As you can well imagine....David has many family and friends who can't wait to come hang out with him.

David's first day in the big pool was amazing. The pool has already proved to be great therapy as he kicked

his legs and paddled all over the pool for nearly three hours. His para Niki and I worked and manipulated his legs and made his kicking a game in the pool. He worked beautifully and we were both impressed with his accomplishments thus far in his post surgery recovery.

Outside the pool we have been working on David's regular PT workouts such as up down's where he sits in a chair and holds onto his walker using the strength of his legs to stand and sit over and over. He also spends about an hour per day in his stander which promotes the strengthening and straightening of his legs. He continues to also walk in our limited first floor space with his walker as part of the therapy. He seems to be progressing nicely although his left hip has proven to be a growing concern for me as I have watched him continue to hike his hip both when he sits and stands. It has caused a change in his posture and given me reason for many a sleepless night.

It was because of the hip issue that Dr. Schoenecker, David's Shriners doctor didn't want just a telemed visit this time, but a full on St. Louis trip. He wanted to see David in person and gauge his progress and the severity of his hip issue in person. I have lived in a bit of fear of this trip, not sure what we would find out and hoping that surgery was not going to be necessary again. We missed our first scheduled appointment due to a summer stomach bug, so it was rescheduled for yesterday. As much as I am not a fan of the 6.5 to 7 hour one way trip, I knew we needed answers to make sure we were headed in the right direction with David's post surgery healing and I truly needed some peace of mind, so yesterday morning at 4 a.m. we headed out for an 11:30 a.m. appointment at Shriners Hospital in St. Louis. May I just say at this point that I am so in love with the Google Maps app on my phone and I now consider Siri a close personal friend as she guided me every step of the way and we got there with half an hour to spare?! Thank you Siri!!!!

The appointment went like clockwork as we first headed in for x-rays and then we were seen by the nurse, resident, PT and then Dr. S. When the resident came in, he wanted to see David walk. David immediately stood up, turned his walker around and with minimal help took off down a long corridor of the clinic. He caught me off guard as he doesn't really have that kind of space at home and he is never really in show off mode when it is just me and his para Niki. He was in rare form yesterday though and both his agility at the task at hand and his speed were amazing. The resident seemed rather shocked as I don't think he was expecting that kind of progress either.....especially with the added down time and recovery of his broken leg. Through his walking, the resident got to see the hip issue first hand and once we took off Davids braces and socks he also go to see his circulation issue (his feet turn purplish/black when he sits or his legs are down for too long).

When the PT walked in, she had a pretty red headed PT student with her. David's love of pretty women kicked in and he proceeded to do something that I had not seen him do since he was still in his baby crib. As a baby with a huge personality, David used to pull himself up to a standing position in his crib and when music played, he would dance by doing sort of a marching move. He knew he was funny and he loved it when we would say...."Dance David! Dance!" Well yesterday, David revised his dance moves with his walker. I know that it was strictly for the purpose of once again....showing off, but this time it was for the reaction of the pretty red head....and he got it. He stood and danced for a good two minutes as I stood with my mouth open and my eyes wide. Again.....he surprised me while entertaining all who were present for his dance. Leave it to David to multitask.

So after all of this and another set of x-rays (this time on his spine), the news was all-in-all....very positive. They think that David's hip pulling is possibly caused because he favors his right leg (the one he broke post surgery). They don't necessarily think it is a pain issue but more a comfort issue. He has screws going up that entire thigh and it may just feel weird to him. However, his pulling of the hip is causing his posture to get bad and a little more curving of his spine. To fix this, or at least attempt to fix this....David is being fit with a posture stabilizing vest. In other words, a modern day version of the old metal scoliosis back braces. Spine surgery is likely in his future to prevent future curvature, but I will cross that bridge when this current recovery is behind us and my nerves are a little less fragile.  Along with the brace, Dr. S has cleared David for intense out patient physical therapy which he would like David to do at the Wesley PT clinic. He wants him in the pool as much as possible and him getting his leg muscles strengthened every chance we get. By doing all of this, it will also help with his circulation issues and we should see his feet more pink than purple. With all of this, Dr. S seemed very pleased with his progress and he wrote his vest Rx so that we can get it done in Wichita thus preventing another trip to St. Louis in five to six weeks. He also put us back on the telemed schedule so that we can see him through Dr. K in Wichita. The best part though, was after all of that.....we were walking out Shriners front door at 2:30 p.m. ready to head back home. The trip home had every possibility of being a bit treacherous as storms were predicted, the sky was black, St. Louis was under a severe thunderstorm warning and radar showed storms all the way west on I-70. However...all we hit weres some sprinkles. Thanks to the cooperation of the weather and my new BFF Siri, we were home by 10 p.m.

It was a long day but my mind is feeling much more peaceful. David is moving in the right direction and with the added extensive therapy and his pool time, I have every hope that the next five to six weeks are going to produce amazing results. So today I make appointments and I prepared for much work on all our parts. It is nothing we can't handle and I know after what I saw yesterday.....David's has definitely...got this!