Monday, March 27, 2017

I Am Still Me!

Special needs parenting. is rewarding and somewhat awe inspiring to know that God chose you as the parent of your child, but to be completely honest, it is also hard! No not just hard, it is really really hard.

Since David was born I have had people come up to me and say, "Wow! I just don't know how you do it. You are amazing." I always cringe at the word "amazing" in accordance with my parenting skills, but my pat answer to this remark is always, "You do what you gotta do." Truthfully though, I don't know how I do it either. It is constantly learning, fighting, arguing, researching.....and did I say learning, fighting, arguing, researching? Most of all it can be just plain old exhausting.

All new parents are on a learning curve, but being the parent of a special needs child, especially one with extreme issues is off the charts scary. Information either comes at you fast and furious or it doesn't come at all. It is an endless stream of red tape, phone calls and entities in which one hand does not know what the other hand is doing. Before I became Davids mom, I was pretty mild mannered. I held doctors in high esteem and would never have thought to question one and the thought of fighting with an insurance company, social security, lawyers, schools or anyone else was so far out of my comfort zone that it was unimaginable. Having a child with special needs though, changes all of that. You learn right off the bat that your child is different and all the politically correct BS in the world is not going to change the fact that in the eyes of just about everyone (often times this includes family) your child is viewed differently. If like David your child is non-verbal and yet noisy, awkward to the world with touch and movement(David does not view himself in the least bit awkward, but others often do) or just the fact that he has adaptive equipment such as a wheelchair, orthotics and a walker.....then he is seen differently. People are uncomfortable, awkward and sometimes in their great efforts to be PC are incredibly offensive. It all just simply comes with the territory. Special needs parents know this and take it in stride. 

Depending on your child's diagnosis you can be looking at years or even a lifetime of uphill battles and well meaning people....which I guess is to be expected and something that most doctors, social workers, etc can tell you straight out of the gate. What they don't tell you though is all the hours you will spend trying to defy the diagnosis or how many hours you will spend researching doctors, therapies, insurance, equipment and schools. You aren't warned about the "new" issues that can occur in an already health compromised child. And....if you are doing this as a single parent, they certainly don't tell you how many sleepless nights you will have listening to your child sleep waiting to hear that one sound that isn't quite right that can mean the onset of a seizure.... or worse. You aren't warned about how many times the mild mannered you will have to pull up her big girl panties and go to war with school administrators, doctors or agency's that are suppose to have your child's back but don't. No one tells you how many hours of how many days of your life you will spend on the phone holding to talk to someone.....anyone who can give you answers about your child's health, insurance, equipment or therapies. And although the second your child starts to school you will be told that YOU are your child's voice and their greatest advocate, you have no idea how many times that you will be ignored or how hard you will have to fight to have that voice heard. 

What you aren't told is that it doesn't matter how many kids you have had previously, nothing prepares you for a special needs child. It is as if you are starting fresh and you never knew anything where parenting is concerned before this child. Everything from holding and feeding your child to changing your child can be different and even life altering if done incorrectly. Everything is different and everything is scary. Milestones are different too. What you take for granted in your other children....holding up their head, rolling over, holding their bottle, sitting up, crawling, talking, walking, etc suddenly becomes questionable. Some or all of those milestones are not met on time and truthfully may never be met. If you are honest, those milestones become incredibly important and if they are met, are celebrated with a joy that you never before understood. You simply take nothing for granted anymore.

Along with the extreme praise people tend to pour on you for somehow doing the miraculous and living life along with taking care of a special child, you also are hit with a great deal of judgement. Some people seem to think that cerebral palsy, autism or downs syndrome are somehow caused by the parent. I have been asked up front by "well meaning" people if I drank, smoked or did drugs while pregnant with David. The answer is a resounding "No!" In fact, I got excellent medical care, followed my doctors orders strictly and took care of myself. After all....I was no stranger to having kids. David was born prematurely due to a placenta previa which simply just happened. His resulting health issues were all due to his being born at 27 weeks instead of the normal 40 weeks. People though seem to think that somehow I must have done something to cause it. What I have come to accept is that people are going to think what they think. I just don't have the time to worry about it.

I have also been judged quite harshly for not working outside the home and holding down a job since money or lack thereof is always an issue. After all.....I have a special child who lets be not cheap and yet I "choose" to stay home. If only people knew or at the very least took the time to understand. We live on a fixed income, never go out, never eat out and never have extra's not because that is my choice but because that is my reality.  Our income goes to utilities bills that are too high, a house that is 50+ years old and is falling apart and food and if there is anything left over at the end of the goes to whatever David needs and David always needs something. 

To be honest, I have held several jobs during Davids life and I was pretty darn good at all of them. The problem though was that when David has an issue, whether it is related to his shunt or his seizures or any aspect of his health, it is immediate and often threatening. This means no matter what I am doing, I have to drop everything and go. It is a rare employer that can have an employee do this....regardless of how good the employee is. Some of Davids health issues have required hospital stays or round the clock observation and in my world, David always comes first. So with the exception of a business that closed, I have been let go of my other jobs because my life and my job were simply not compatible. Even though it seems futile though, I have still searched for the occasional job hoping that I might find that elusive employer who would let me work from home, the hospital or wherever I was, but instead I have been deemed "unemployable" by most. This means that added to the stress of raising a special child, there is also financial stress. ALWAYS financial stress. 

Finally, I have been told that I am no fun. Many of my friends have given up on me as they are all at an age where their kids are grown or at least old enough to take care of themselves, so they are free to go to dinner, go to movies or have a Saturday night out with the girls. I almost never am. Other than school, I am David's 24/7 caretaker. I of course could go through the red tape and get respite care, but not without paying a 1/3 of our monthly income every month. Trust me I have been down that road and hit a brick wall every time. And unlike a parent with other kids, I can't just call the teenage neighbor girl over to watch him, as he takes specialized care. So needless to say, I don't go anywhere. I have been labeled no fun and my friends have just given up asking me to go anywhere as they know my answer is almost always an "I'm sorry but I can't." Try as they might....they simply can't understand and I am tired of explaining. My world is just so different than theirs. what am I saying here? I am speaking the truth. I love David more than anyone can ever know. David has taught me so much about myself, about life and about the person I want to be. I am blessed to be his mother and everyday I do thank God that He chose me for David. That being said, being the parent of a special needs child is as I said before.....really really hard. It is a hard that only another special needs parent can know and understand. So where does that leave the rest of the people in my world? You can accept that while you may sympathize with my life, that you will never truly understand what my days are like....and that is okay. I am not a fan of sympathy and I understand that you simply can't. Just don't judge me when my hair is uncombed and I am without makeup after David has pulled an all-nighter with stemming and yelling out. Don't assume that I don't work outside the home because I don't want to and please don't make me the friend pariah because I am not free to go out and play. I still need friends....because somewhere deep inside....I am still me!

Sunday, January 1, 2017

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

Yes, I has been eons since there was a David update. My bad. No 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 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 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. 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. 

Saturday, June 4, 2016

Goals Met and Such.......

In the past fifteen years, there have been so many roller coaster rides. If you read this blog or follow David on Facebook, then you know, and you know I have taken you all along for some of those tougher rides. Currently though, things are exciting. This doesn't mean that the minute I push "publish" on this blog that we won't be right back on the roller coaster, but it does mean that right here and this moment.....David is doing and accomplishing things that he has never done before. He is making daily and consistent progress and yesterday after PT, I had to take some alone time and shed a few tears.

Yesterday at PT, Davids therapist did an updated evaluation on where David is at as to where he was a year ago when he started with her. We set goals back then for David and while he made a little progress here and there, he had a lot of set backs with seizures and his health. We missed a lot of PT sessions and for a while, he lost a lot of ground physically. In January, I almost quit sleeping over the state of David's health.

If you remember, David was doing home bound school because of his seizures. He was throwing them almost daily and sometimes multiple times in a day. He was fairly inactive and even though he was having HB school, he was just losing so much. His little body looked frail and his ribs stuck out like razors. I saw it and was trying to figure out what to do as I met with doctors, his PT and his school team. It was getting pretty devastating.

It was at this time I started researching alternate ways of eating, diets that worked for kids with cerebral palsy and foods that would help to build muscle in his body and strengthen him. Once the diet was in place, we hit the PT strong. The diet seemed to be keeping him healthy and we were seeing less and less seizures.

Then came the botox. I knew so little about botox but both David's PT, whom I trust implicitly as well as his neurologist whom I trust even more, supported botox therapy for him. I had to try for his sake. After his first week of weakness and my constant fear that something would go has been one of the greatest things that has ever happened for David.

So at his evaluation, his PT proudly told me that David has met or surpassed every goal that she had set for him. He can ride his bike, he can walk in his walker without a seat and he can walk pretty good distances with his walker. It was like he got straight A's on his report card and I was so excited I wanted to cry right there. So as these were all met, we had no choice but to set up a whole new set of goals and one of them is......standing on his own! It literally took my breath away.

David is very determined, but even with his determination.....he will have obstacles ahead. They are the kind of obstacles that to this mom are terrifying, but they are also an ends justifies the means scenario, if the outcome is that David is independent. Currently we are getting David as strong as he can be from head to toe and diet and PT are the keys to this. Then there will be his spine surgery which at this point looks to be a necessity. If not done, then eventually the curvature will start crowding his internal organs and make standing impossible. After that recovery and re-strengthening....then there will be the decision to see if he needs his hip done again. You might remember that after his last hip surgery he broke his leg and in the process of the leg healing, his hip fell back out of alignment. If that surgery is necessary, then he will have to heal and once After that though.....the sky should be the limit for him.

It is a lot to process and a lot to keep this mom from sleeping some nights, but it is also exciting. So much has to go into the next couple of years of Davids life and one thing his PT really wants is the gradual banishment of his wheelchair. Yep, she wants him using only his walker as his means of mobility whether it is at home or at school. This means....Mom, teachers, para's and all those who participate in David's day to day life are going to have to be strict with him, patient with his progress and huge cheerleaders in his life. I have no doubt we can all do it. I mean really....who doesn't want to see David achieve his independence?!

So yeah....standing on his own. Those are words that I had been told to never even think about where David was concerned.....let alone hope for. Now they could be his reality. Now.....maybe you understand my tears. I said....this summer is exciting and soon we will add the pool to our daily therapy. David is amazing and apparently he maybe walking yet. We will keep you posted. Until then....Happy Summer Everyone!

Tuesday, May 24, 2016

Schools Out for Summer

Can you believe it? Today is David's last day of school for the 2015-2016 school year. You can almost hear Alice Cooper singing in the background. It doesn't even seem possible. It has been quite a year.

As he was waiting for the bus this morning, I couldn't help but watch him and think what a handsome young man he is. Yes, I know ALL mothers say that about their kids, but to me.....he is so handsome. He looks just like his daddy and he has the most infectious laugh and smile. He is growing up so fast and every day I am blessed beyond words that God chose me to be his mother.

Looking back, this year has had it's highs and lows from the surgery to remove the plates in his knees and leg, to his seizures that came back with a vengeance to home bound school. He had a few hospital visits mixed in and he gave me a couple of scares that only David can give.

On the flip side, he has an amazing PT now that has pulled so much hard work out of him. Now that the medal plates are gone, he was a good candidate for botox and that has been amazing and finally....he ended up in the high school with a wonderful team and has thrived since day one. All in has been a really great year.

I think of all of Davids school years, this one might have been the most educational for me. I have learned so much about David and Davids world. I have learned more about cerebral palsy and a little about autism....and I have learned a great deal about just how strong and determined David is. A doctor told me once when David was in the NICU, to never underestimate David and to never count him out of anything. Boy was that doctor correct. The older he gets the more amazing David is.

So now that school is out.......what happens? We have a bit of break for a couple of weeks and then David will have a month of ESY.....extended school year. It will only be for about 12 hours per week but it will be enough to keep a bit of  a school routine going. He will also continue his PT weekly at Heartsprings and once the pool is open, he will be having daily pool therapy.

I also hope to throw in a lot of bike riding as he has mastered his bike/trike and thoroughly loves riding it. I hoping there will also be park outings as well as time spent at the zoo and some other fun local places. And finally....I am checking out HIPPO therapy (horseback riding therapy) as that is something I think he would love to do again and would benefit from immensly.

So as you can see, I am hoping for a relaxed and yet full, summer. We all need it as next year he will be a full fledged, mostly full time high school student and we need to be rested up and ready.

It's the last day. As of tomorrow...our schedule changes to no real schedule and weather might just see us turning up just about anywhere.

Happy Summer!

Tuesday, May 17, 2016

A "Special" Bathroom Rant

Bathrooms! Who knew that in 2016 bathrooms would be the headline on every imaginable news outlet? No...we have no real world problems to worry about such as hunger, healthcare and unemployment. So bathrooms it is. Can you tell this mama is gearing up for a bit of a rant?

While it is true that I have an opinion on most everything, my opinion on the transgender issue will remain my own, at least on this blog. However, I have a HUGE opinion on bathrooms! Go figure.

Now, for the everyday ordinary person, a bathroom should have only one main purpose. For most of us it is a get in, get out event and up until recently....the only issue most of America had with a bathroom was it's cleanliness. Even that becomes less important if you are in dire need of the facilities. I myself have been known to use a men's restroom (with spotters of course), an alley behind a building, the side of the road and even an out house. I am still traumatized over that last one.

Today though, bathrooms have become battle grounds of who is privy to use which privy. Bathrooms have become the forefront of politics and are even being used as bargaining chips in some states. Businesses are staking their profit margins on where they stand on the whole restroom situation and people are literally losing their minds on both sides of the issue. Really?

Finally, I got to the point where I just could no longer hold back and I had to speak out. This is bull fritters....pardon my French. We are talking about the place where people feel "comfortable" going to the bathroom. Well excuse me, but long before the transgender community was feeling uncomfortable, there was a whole, much larger group of people who felt uncomfortable using restrooms and no one did diddly squat for them. What group am I referring to? Mom's and especially mom's (and dad's too) with special needs kids.

Oh yes. As any mom can tell you, it is absolutely no fun trying to take a 5 year old boy into a women's restroom. The 5 year old is not old enough to go to a public restroom on his own and yet he is not crazy about going into a bathroom and doing his business where he is surrounded by women. The other women are not particularly excited to have a little boy in the ladies bathroom either, especially if there are also little girls in the bathroom. It is awkward for all involved to say the least and I am sure for those single or lone dads with daughters, their experience in the men's room is equally as uncomfortable.

Thankfully, in the new millennium, a light bulb went on above someones head and certain public places such as pools and gyms came up with the idea to have a "family" restroom. This is a place where mom and/or dad can take the kids in without the disgruntled looks of others judging them for bringing their kids into the "wrong" restroom. Still, even today though, these family style facilities are few and far between.

As uncomfortable as the bathroom situation could be when my older kids were growing up, I never really knew uncomfortable until I had David, my youngest son who has cerebral palsy. Bathrooms are simply not equipped for parents with special needs kids and THAT in my humble opinion is the comfort that should have been worried about and worked on long before now.

When David was small, it was easier if I had to go to the bathroom, but still somewhat awkward. If nature was calling for me, then I would have to bring him into the ladies room with me, stroller and all. If it was a single toilet space then there was usually room for the stroller and I both, but if it were a multi-stall space, then I would have to wheel him into the stall with me, leaving the door wide open and ending all privacy for myself and any unfortunate on lookers. As he got older though and was in a wheelchair, the spaces were much more difficult to maneuver with his chair and other women didn't really appreciate having him in their bathroom. It was a matter of privacy and comfort and believe it or not....yes, I have a special needs son, but the world does not revolve around us, special needs or not. Other peoples comfort is a concern for us too. It comes down to the fact that there just has to be a better system for special needs parents, kids and bathrooms.

The real difficulty though is the special kids. Just because they are special doesn't mean they don't have to relieve themselves and that they don't deserve the same privacy and respect that the rest of the world seems to demand. This can get quite complicated when restrooms are neither private nor equipped with the proper space and equipment for those with different needs.

When kids like David have CP, their muscle are often very tight and even in the best situations, changing them can be difficult. Laying them on a cold, hard  floor makes it even more difficult. They have to be laid out to be changed and no mom wants to lay their child, who is likely already prone to every infection known to man, on a nasty, dirty public bathroom floor. It is disgusting and again, not great for others who also have to use the restroom and who are having to dodge you and your child in the middle of the floor.

Yes, some bathrooms do have pull down changing tables, but most of those are for very small children and often special needs kids remain incontinent for a good deal, if not all of their lives. So then what? We are back to the floor? Quite frankly....I think with the ever growing special needs population, they deserve better.  As they grow older, the need for a "comfortable" and private bathroom becomes even more important and honestly.....very few of those exist.

As a special needs parent, we learn to roll with the punches, adapt to that which seems unadaptable and make do because our options are limited. Through the years, I have changed David on my lap, in a chair, on the hood of a car and in the van many times, just to avoid a disgusting bathroom floor or because there wasn't space in the bathroom to change him. It was difficult but always better than the alternative. As he grew older though, our options grew smaller and his need for privacy and dignity made the above changing options obsolete.

Now David is getting older. He is nearing the age of manhood and although we are trying to potty train him, the reality is that he will likely always be incontinent and therefore in need of changing. Does this mean we can never leave the house because there are no facilities equipped to handle the changing of a grown special needs child? I know I am not alone as I have talked to many mothers of special kids who are in the same boat. Is his life, comfort and dignity less important than that of a transgender person? Is he any less deserving of a comfortable and private bathroom than say Caitlyn Jenner or Jazz Jennings?

The percentage of transgender people in need of a special bathroom in the United States is 0.3%. The percentage of disabled individuals in the U.S. is 19% and of those at least 15% need specially equipped restrooms in order to be able to feel comfortable going out into the world. They need bathrooms big enough for wheelchairs and walkers. They need changing tables that can hold kids up to 100 lbs. They need space for the special needs person and their caregiver and most of all they need privacy so that they are comfortable and those around them are comfortable too. Why are we not fighting for this? Why isn't Target fighting for this? Why isn't Bruce Springsteen refusing to play concerts in any state that doesn't provide "comfortable and private" bathrooms for those with special needs? Why isn't President Obama taking a stand for our special needs population? It's like talking to a wall.

So to all of you who are worried about bathroom comfort, I ask that before you give a "special" bathroom to a person who may identify differently, but can still easily walk in, use the bathroom, wash their hands and walk out, please think about those "special" individuals who can't do that. Think about those who "need" a bathroom that accommodates their ability to relieve themselves, be changed and helped if necessary, all while maintaining their self respect, dignity and being able to live their lives out in the world.

Rant over....

Friday, May 6, 2016

Botox....It's Not Just for Wrinkles Anymore know Botox? No you don't! Okay....maybe it's just me. Maybe,I don't didn't know Botox, but I am learning.

This has been an interesting week. Interesting in the fact that I have felt awful. I think it is the change of seasons along with maybe having a bit of a bug, but it has made me wish I could crawl into bed and stay there until I feel better. Unfortunately, life is not as accommodating as I would like it to be, so.....I lay down when I can and carry on with life as best I can. Yes, I will survive, but it hasn't made this screwy week any easier to deal with.

Monday, David had Botox injections. They are likely to be the first of many in the next couple of years. Yes, I said Botox. I know....crazy right? If anyone in this family needs Botox...... I will not even finish that sentence.

Botox is something that was brought up to me about a year ago. The neurologist originally brought it up and thought that somewhere down the line David could benefit from the procedure. Not knowing for sure how David could possibly benefit from Botox, it was one of those things that as a special needs mom, you kind of let drift out of your brain or file it somewhere in the back of your mind under "I'll think about it later."

Later came, when David started going to Heartsprings for physical therapy(PT). The PT loved the things that David was accomplishing but she felt he could do more with a little help. That help she felt could come in the form of Botox. So I unfiled the topic and asked her more about it.

David already has a device implanted in his abdomen which is called a Baclofen pump. Baclofen is a muscle relaxant that is often used in kids with cerebral palsy, as their condition causes their muscles to be very tight which makes, walking, using their legs, feet, arms or hands very difficult if not impossible. In kids like David, if the Baclofen pump is implanted, then they get a steady and constant dose of Baclofen which helps to loosen the muscles. David's upper body is pretty good, but his lower body had been very tight which made PT difficult and walking almost impossible. Once the pump was implanted his muscles became much easier to work with. The problem with the pump though, is that it is kind of an all over agent. It can't really target specific muscles. which means some muscles get looser than others and then that can be a problem. This is what we found with David.

If you see the videos I post of David riding his bike or walking with his walker and you notice that he looks awkward or seems to be dragging his legs a bit, it is because his hamstrings are very tight and can't carry the load of his body properly. They are making his other looser muscles pick up the slack for what they should be doing. Valerie, his PT felt that if he got Botox in his hamstrings then this might loosen up only those muscles, thus making it easier for him to strengthen them. We went back to the neurologist and he felt that she was right and so Botox it would be.

To be given the injections, David had to be admitted for outpatient sedation at the hospital. It really was much easier than other outpatient "surgeries" David has had. They bring him to a hospital room and everything is done right there from start to finish. I haven't decided yet if it is an upside or a downside that I was allowed to stay in the room the whole time or not.

The procedure was a little rough for David as they had to put an IV in and his love of IV's went out the door many many hospital stays ago. It takes a crew of 3-4 of us to hold him down as he just freaks when he knows they are going to do it. It doesn't help that his veins fold, roll and run away every time a needle comes near them. A dose of oral Versed and 3 wildly uncomfortable sticks (for all involved) later, and he was good to go.

They then put him under, where he was in a half awake, half asleep stupor. They need his muscles reactive, but his body feeling or more likely remembering nothing. In the room at all times are the neurologist, the anesthesiologist, nurses, students (it's always a teaching moment with David) and me. The doctor then injected David in each hamstrings with the Botox. He used a long needle attached to a machine that I believe was showing waves of his muscle activity.

The actual procedure only took about 10 minutes and they said he should come out of the anesthesia within an hour. Two and a half hours later, we were still waiting for David to wake up as he slept a deep, snoring sleep.  Once he was awake though, he seemed fine and they said he was good to go to school the next day and there should be no side effects or issues. You would think by now.....we would all know David better than that.

So what is the end game using Botox? The way the Botox works is that every day we will see more and more looseness in his muscles. By about the 6-8 week mark he will hit the peak. During this time we will work those muscles, stretching them and making him ride his bike and walk as much as possible. In about 4 months, we will then do the procedure again. The goal is that each time, less and less Botox is injected and more and more hamstring muscle is built and strengthened. In the end, we want his hamstrings to be strong and do what they are suppose to without any Botox intervention.

After we got home, it was obvious Davids legs were very shaky. The looseness apparently begins right away. That night, he had a tiny seizure. It was so tiny in fact, that I wasn't even sure it happened, but with the stress his body had been under that day.....I wasn't surprised.

The next day he went to school and when he came home, he was a little monster. Yes, I can say that....he's my child. I put him in the stander and he refused to get out after an hour and a half. He went into full on hit mode every time I tried to take him down. I am thinking that maybe that stretch made his hamstrings feel good. His circulation though wasn't liking it as much as his hamstrings were, so in the end, Mom won out. That night, David had another seizure. This time it was evident.

Over the course of the next 36 hours, he had three more. In the process of all of this, the neurologist and I were in close contact. Why was he having seizures? It could have been the stress of the procedure, out growing meds, the wind blowing the wrong way.....who knows?! Whatever it was though, we needed to get them under control, so he upped the dosage of one of his night time meds. Yesterday morning I kept him home from school because of his seizures and his less than sunny disposition. It had been a long night for all of us and quite frankly I didn't figure he would be any good at school. I was right.

He got up and played until about 11 a.m. at which time he crawled in bed and fell asleep. You remember that post procedure sleep I was talking about on Monday? Well, that is how he slept yesterday until 8 p.m. He woke up long enough to eat and then fell back asleep. He didn't move until I forced him to get up at 9 a.m. this morning. This is so not David. So, the neurologist and I had another talk. Apparently David is not handling the added dose of the med well. The doctor is however hoping that he was on it long enough to have handled the seizures. So as of tonight, we are back to our regular dosages and we will see what happens. We may have to play with meds for awhile, but Zombie David with the nasty attitude is not acceptable.

Today, David went to PT and his therapist had him riding his bike. His muscles aren't strong enough yet to pedal by himself like he was doing, but he was riding with assistance and with every pedal he was stretching and strengthening those little legs. So for now, my job is to put him in the stander daily. Schools job will be to make him walk and ride his bike as much as his strength will allow. The bike will likely be easier but the walker is still necessary. And finally....Davids job is just to keep pushing forward like he always does.

Oh....and a little update to project Fatten David Up. The 5-6 meals per day along with protein and good fats seems to be working. When he was at the hospital Monday, they weighed him. Since February, he has gone from weighing 74 lbs to now he weighs........87 lbs!!!! I am very pleased and so was the doctor. Way to go David!!!!

So there you have it. David's getting Botox and Mom's gray hair and wrinkles.....well.....they remain the same. Stay tuned!

Wednesday, April 27, 2016

Riding the Waves of Peace....a David Update

April! And the end of April to boot. My how time flies when you are living life!

It's been a while since I did an actual update, so while I appear to be on a blog binge, I thought I might do one today. It's hard to update though when things are quiet and normal because no one wants to read, "Things are quiet and normal!"

I'm really not sure when the last update was so I will just start from January.

In January, things started changing for David. Now I am not a fan of change, simply because I equate it with something negative. Yeah that's me, the cup half empty kinda girl, but the changes we have under gone have actually turned out to be pretty positive.

Also in January, David was still home bound for school, but after some discussion, we decided that since he would be transitioning to the high school next year anyway, and since he was 15, perhaps this was the ideal time to actually start the transition. So....his whole team changed and his new high school team began coming to the house to work with him. Although we (especially me), missed the comfort of knowing everyone and how everything worked at MGS, I knew that it was time I bit the bullet and admitted that my baby, wasn't even remotely a baby anymore. Can I say this sucked? But I knew it was for the best.

David seemed to like the new faces and the new home bound schedule and amazingly seemed to handle it well. After a couple of weeks, we set a date for him to actually start back to school. This time, he would be attending high school. You will never know the mixed emotions I had when I sent him that first day. As I put him on the bus, I had great hopes that this would be the start of something really good for him, but I still felt hot tears stinging the backs of my eyes as I sent him off. It was a mile stone that I only dreamed of previously. Now we were living it.

Well, it seems that the move to the high school was a good choice for him. I think he truly enjoys being with kids his own age and I have noticed that his attitude and mannerisms have matured a bit, even at home. He is not nearly as wild as he was and the reports from the school are that he is acclimated well.

One of the best things about the transfer to the high school, has been the kids. I have had several parents contact me and tell me that their kids have come home and told them that they have seen David in the halls. They are truly happy he is there and very welcoming. A couple of kids have even told me that....they have Davids back, should the need arise. While I don't anticipate the need arising, this has still been very unexpected and very appreciated.

In March David had another EEG. It was a great experience for many reasons. Usually David has to have mild sedation in order to do the test because he likes to move around and is a little bit combative when people come at his head. This then adds a good 30-45 minutes in the office. This time though, David sat in the chair, let them put the wires on and never moved. We were in and out in under an hour. It was wonderful! The best part though was that his results came back NORMAL. This means that his meds and his VNS are currently keeping the seizures well under control. In March he had been almost 4 months without a seizure. That is the longest he had been since he started having seizures in 2008.

David has a flex sort of schedule at school this year. He goes Monday, Tuesday and Thursday. He has Wednesday off as a sort of a recuperation day and Friday because he has Physical Therapy (PT) at Heartsprings in Wichita. This is working out well for him and I think it makes school easier for him. Honestly, it makes my life easier too. This will likely change next year, but for now, it is ideal.

In February, it became apparent that Davids home bound school status and his more inactive lifestyle at home had done him no favors. He had lost some weight due to the fact that he had grown a couple of inches, but more alarming to me was that he was losing muscle mass, which meant he was quickly losing his lower body strength and his ability to walk. His upper body is very strong, but his lower body was starting to fall way behind and with these kids, when they start to fall behind, they may never be able to regain what they lose. David had undergone too much and worked too hard for me to allow him to lose anything.

I was now on a mission to get David back to where he was prior to being home bound. I talked to the doctor and his PT and then I put him on a new food plan. He now eats 5-6 times per day and his diet is full of  healthy fats, protein and a good selection of fruits and veggies. You would be amazed how expensive it is to eat this healthy. My grocery bill has nearly doubled, but the up side is that he has gained 4 lbs and he is getting much stronger. His PT is thrilled at the progress he is making and so am I. We are finally starting to catch up again.

At the end of March, David had his baclofen pump surgically replaced. This pump is in his abdomen and it has tiny tubes/wires that constantly take baclofen (muscle relaxant) to his muscles to keep him from being very tight and rigid because of his cerebral palsy. Every seven years this pump and the wires (if necessary) need to be replaced. This was his seven year mark. It is an outpatient surgery, that went very well. He was back at school within a week. Unfortunately, he was allergic to the steri-strips or possibly what they attached the steri-strips with and the skin around his incision became inflamed and almost infected. It happened all of a sudden and about a week after the surgery. Luckily his school para and teacher were on their toes and caught it. We got him in just as it was starting to blister and get very nasty. It took a doctor appt., antibiotics and an ER trip but now it looks amazing.

Then this month. Hmmm....well....he has had one really rough seizure which landed him in the hospital and then a couple of small seizures. The main (big) seizure he had was the product of him hitting his head when he came up underneath a door knob. He kind of half laughed and half cried when it happened and I frantically checked him for a break in the skin and that he didn't hit his shunt. He seemed fine, but within an hour he had a full on seizure. It earned him an ambulance trip to the ER and an overnight stay in the hospital. Luckily there was not shunt damage, but unfortunately he did give himself a concussion. He was my first kid to get one. Sigh..... What an honor! Since, he has had a couple of small seizures, but they think that more than related to the concussion, it might be that his growth spurt has caused him to outgrow his med dosages. We are watching them currently to see if a pattern emerges. Stay tuned......

All in all.....David is doing amazing. He has lots of energy and he is very happy. He is doing well in school and he is non stop on the go at home. He seems to be comprehending more than he ever has before and his physical abilities continue to expand and grow daily.

Currently the speed bumps are small but when they do happen they are few and far between. We did find out that probably in the next 6-9 months he will have to have a spine fusion surgery as he does have a pretty good case of scoliosis. His is in the lower part of his back and he currently has about a 43% curve. They don't want to do anything until it is 45%. It will be a fairly significant surgery with about a week in the hospital and a 6-8 week recovery time. When he gets it, it should make a huge difference in his posture and his ability to move, walk and position himself. With that in his future, his PT and I are working like crazy to make sure he is as strong and healthy as he can be by then so that his recovery is just that much easier. Yep....another speed bump.

So that about covers it all. Life is good right now. We ride the waves of peace when we can and then pick ourselves back up when we fall. But really....isn't that the way everyone does it?

Until next time.......