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 all....it 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 permitting.....you might just see us turning up just about anywhere.

Happy Summer!

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....

Botox....It's Not Just for Wrinkles Anymore

So...you 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!