Cerebral palsy

Hips Don’t Lie

But they do fail. The little man’s hips have been an issue for a few years now and things are quickly coming to a head.

Hip problems are fairly common for children with cerebral palsy – in the little man’s case, a mix of spastic muscles pulling on the joint and his inability to do much weight-bearing on his legs has landed him in a deteriorating situation. We are dealing with developmental hip dysplasia. Basically, one of his joints has not formed properly. The other is okay, but not great.

I’ve learned so much about hip development over the last couple of years, but I’m not a doctor and have no clue how to explain this without demonstrating with my hands. So I googled a diagram. Its like school!

The little man isn’t at the point where he is having any pain and hasn’t lost any of his already limited motion. One leg is noticeably longer than the other, it is becoming increasingly difficult to change his diapers, and his bottom half is slightly rotated. We’ve been watching it and trying other options, but the thing I have been dreading most is pretty much our only remaining option.

::sigh:: Surgery. ::sigh::

His hip hasn’t dislocated. . . yet. But without surgery he is heading for more discomfort, complications, and pain. It would also mean giving up on a future where he can stand or walk. And no, we aren’t ready to give up on that. Even just being able to stand and assist with transfers would mean a completely different life – one where he can use the restroom in privacy and ride in a regular car seat.

We are tentatively on the schedule for a hip osteotomy in January where the little man’s surgeon will go in a carve out a better socket for his femur to fit in snugly. It isn’t pleasant. On top of the awfulness of putting a child through this kind of pain when you aren’t able adequately explain what is happening to him, he will come home in a body cast for two months. It makes me sick to my stomach just to think about it and has since we first learned about the possibility from our surgeon in Arkansas.

We’ve always had great doctors and a great team. I trust them. I know we are making the right decision, but that doesn’t make it any easier. Surgery won’t be final until we have a massive team meeting in September. I guess if you don’t have a loved one with a major disability or other illness, you might not quite understand what I mean by “team”. It isn’t an exaggeration. No less than 12 people will be involved this meeting, including the husband and I. No decisions are made alone. Thankfully.

The First Nine Weeks

Okay, let’s talk about Kindergarten.

The little man has officially been a kindergartner for nine weeks now and – overall – it is going well. He has no problem waking up a little bit earlier to catch the bus. In fact, he really likes the bus driver and is usually excited when it pulls up outside the house. If I’m not in the living room when it arrives, he gives a little yell (usually “hey”) to let me know it is time to go. Then as they raise him up in the wheelchair lift he waves goodbye, just smiling and happy. We like the bus driver too; he has been driving the special needs bus for several years and is great with the kids.

Of course there have been some days he hasn’t been thrilled to head off to school, but the little man is pretty agreeable and typically gets over it pretty fast. Although occasionally he will tell me “no” when I try to put his uniform on. Sometimes that is a game – he wants me to be taken aback by his audacity – other times he means it.

He still isn’t completely sure of the routine. Every day when I carry him down the hallway to the living room he asks where his dad is. I’m assuming he just isn’t sure if it is a school day and dad has already left for work or if it is the weekend and dad is relaxing on the couch. It doesn’t bother him when I tell him dad is at work, so it’s all good.

I’m pleased with his teacher. She is absolutely still trying to figure our little man out, but is committed to finding out what works best for him. This is really all you can ask for. I mean, there is a huge learning curve with a disabled child and every single one of the kids in that class is different. I love the fact that she is supportive of our desire to get him spending some time with the typical kids. The little man has always learned better from other children and I wanted to make sure he was able to spend some time outside of the special needs class. His teacher was happy to give it a try and it worked out so well we are adjusting the IEP to add more time with regular kindergarten classes. This is during things like art and music, not standard teaching time.

He got a good report at the first parent-teacher conference. I was very happy that one of the first things his teacher said to me in that meeting was that she understood what I meant when I was explaining to her that there is a lot more going on in this head than he can communicate. The little man is profoundly disabled, but had a lot of potential mentally if we can just figure out how to get it out. I try to let everyone we work with know this, but it can be hard to get the point across – hard to make it seem like I’m not just an overly-optimistic, partially-deluded parent.

He is struggling with being comfortable around the kids, although I’m sure this will only approve. The little man is used to be the “most-disabled” in his classrooms. Being around other children in wheelchairs and children awkwardly (and adorably) traipsing around in their braces must be a bit of a shock. We are working on getting him a new chair in the classroom as he doesn’t like being in the current option that much. If he feels a little more secure when he is out of his wheelchair, I think he will feel more comfortable with the other kids. It isn’t a social problem, that’s for sure; the little man is a social butterfly.

I don’t feel like his therapy is up to the level it was at his preschool, but these are brand new (to him) therapists still learning about his skill level and possibilities. I’m not worried about this working itself out as they get into a groove with him.

From my point of view, I’ve been surprised by how much of a shock kindergarten has been for me. There is no ignoring the fact that my son is on a different educational track than the other kids in the school. He recently had a field trip where a small group from his class went to a local community market to learn about fruits and vegetables. I was conflicted – on one hand, I know the little man loved it and I’m glad he is getting to go out and about; on the other hand, I’m sad that my son’s education is going to be so based in learning navigate his world in a very rudimentary way. I’ve also discovered a new found fear of other kids (and adults, let’s be real here) making fun of him and his classmates when they are on field trips. These are my fears though, not his.

And It Begins!

Wheel Chair - iStock_000011476045LargeThe little man’s kindergarten journey, I mean. And guess what?! You, dear readers, are going to get to accompany us as we navigate this new territory.

We had our first meeting with the district’s special education coordinator last week. It was mainly just to meet at the little man’s current school, make sure all of the referrals were ready to go, and ask any questions we might have about the process.

And to fill out forms, of course. Probably some we have already filled out before. Many that are incredibly difficult to complete. You know the ones – where they give you two lines to describe your child’s medical conditions (ha! I’m going to need a second page) and give you tiny blanks to explain what your child can’t do or has trouble with. Um. . let me tell you what he CAN do and you just assume he struggles with the rest.

Seriously. The little man qualifies as profoundly disabled; those forms aren’t written for us.

That being said, the special ed coordinator seemed friendly and – more than anything – I’m thrilled to be getting this process started. The next meeting will involve some actual discussion about eligibility, placements, and needs.

I’ll keep you updated!

To pump or not to pump? Baclofen is the question.

No, this post is not about breastfeeding. This isn’t that kind of blog.

The little man had a consult with a neurosurgeon last week about the possibility of implanting a Baclofen pump. I am wholly confused and undecided about this.

First, what is a Baclofen pump? Baclofen is the muscle relaxer the little man takes everyday to help with his spasticity. He takes it three times a day and it has to be refrigerated – not exactly the most-friendly medicine. If he doesn’t get his Baclofen, his limbs are tighter and he has more difficultly maneuvering, especially with his hands. A Baclofen pump is implanted into the abdomen and delivers the medicine straight into the spine in an area called the intrathecal space. Taking the medicine this way eliminates the regular muscle relaxer side effects, can possibly make the dose smaller, and, hopefully, makes the medicine more effective.

There are a lot of positives that can come with the pump. Aside from the possibility of greater muscle benefit for the little man, it would mean no longer being tied to a three-times-daily medicine and no longer having to plan days around doses or pack an appropriate insulated lunchbox. The little man’s last daily medicine would only have to be dealt with every few months when the pump is refilled (through a port). The hope is that the pump would greatly improve his muscle spasms. Since the spasms are a huge reason he is unable to sleep through a night, the pump could mean we finally get to have a normal sleeping situation. That would make a huge difference to all whole family.

There are also a lot of negatives. Since the medicine is being delivered straight to the spine, overdose is common as the new – typically lower – dose is being settled on. This would happen in the hospital, of course, but it is still a concern. Then there is just putting the little man through another surgery. Doing the test for the pump alone was horrible for our family; the little man had a spinal headache for a week after and it was unlike anything I had ever experienced. I dread willingly subjecting him to that possibility again. The pump only lasts for five years or so and will have to be replaced (just the pump though, not the catheter into the spine). Do I want to sign my son up for a lifetime of surgeries?

And of course, there is the unknown. The little man is tall and thin; will there be enough room for the pump? If we wait will he just get taller and thinner leaving even less room? What will his recovery period be like? Three weeks until normal activity for a five year old is pretty daunting.

The little man’s neurologist, his physical therapist at the hospital, and the neurosurgeon all think he is a good candidate. I must add, the neurosurgeon was wonderful. She answered all of our questions and didn’t pressure us to make any decisions during our consultation. But at this point, we just don’t know anyone who has first-hand experience with the pump.

Our next move is to meet with his physical and occupational therapists at school – the regular ladies who see him three times a week – and get their detailed opinions and information on any experiences they have had with the pump. I’ll be scouring the internet for opinions, of course, but most of the stuff I found in my initial looking several months ago had to do with older people. I really want to find some people talking about the pump in young children. After that, we’ll talk with his regular pediatrician and his doctor at the hospital’s medical home clinic. Both are tell-it-like-it-is doctors with excellent bedside manner.

Anyone out there have experience with the pump – good or bad? I’d love to hear your story.

Like A Ninja

I have another BIG DEAL ALERT to share about the little man.

He has been in his new pre-k class for about a month now and – of course – loves playing with all the kids his own age. The kids in his class are all great to him and his teachers are wonderful. Last week, the little man made another big advance on the social front.

He pretended to be a ninja with a group of little boys. This is the first time he has ever played like that. If you remember, the last time the little man had a big advancement in the play world was with his move from the infant room to toddler classroom – in that case, he began to pretend he was talking on the phone.

Anyway, the little man wanted to play with his friends. When the teacher gave him his own ninja mask, he put his little tiny fists in the air like he was punching. They took a photo of it for us and I wish I could share it here. It is just awesome.

Until now, the little man really loved playing with other kids, but it usually amounted to them bringing him toys, or tossing a ball to him, or him simply being in their area and enjoying their company. This is a whole new level of play.

I am constantly amazed by his progress.

Watch out world!

Looking Towards the Future

I’m at a conference this week in Washington DC, so I’m reposting some old favorites from the beginning of my blog. I’ll be back with fresh content next week and – in the meantime – keep up with me on Instagram to see highlights of my trip.

This post originally appeared on my blog on June 7, 2013.

Parenting a disabled child takes all of the plans/hopes/dreams you had for the future and tosses them in a large blender then mixes them up and shreds them a bit before spitting everything back out on the other side leaving you a big mess to sort through. Kind of like a giant strawberry smoothie of life – the strawberries are still there and still taste good, but aren’t quite the same as they started.

Many of my hopes for the little man are things typically taken for granted – I hope he can speak; I hope he can sit up unassisted; I hope he can walk. The bigger stuff is still there – I hope he can fulfill his dreams, have a family, find a career, explore the world – but the day-to-day goals overshadow them.

And then of course is the overall hope – that the little man will live a full life regardless of limitations. That one is always in the background. Yes, I hope he can walk someday. But if he can’t? We can provide him with the most-awesome wheelchair available. Maybe one with flames and a rear spoiler. Yes, I hope he can speak someday. But we are working with ipad apps to provide him with a way to communicate with anyone he comes into contact with.

Don’t even get me started on my hope and dreams for my other family members. We just don’t have enough room to talk about all that today.

I am, by nature, a planner and an anxiety-ridden worrier. I worry that my daughter will one-day feel that her brother is a burden – regardless of how much she loves him. I worry that no one will be around to tell her that it is okay to feel that way, that it doesn’t mean she loves him any less and doesn’t mean she wouldn’t do everything in her power to help him. I worry about the other parents out there who feel like they can’t express their frustration, their desire for just a little bit of time alone, their need for a “normal” day, their jealously when the play group parents complain about colds and ear infections instead of therapists, feeding tubes, and an ever-growing list of medications.

I worry that no one has told those parents it is okay to be selfish sometimes. It took me a long time to feel comfortable talking about the challenges my family faces, to shake the horrible feeling of being judged if I spoke one ill word of parenting the child who is such a joy in my life. I worry that no one is there to help those parents when they need help. When they need someone to understand how difficult it is to find a babysitter and just come watch the kids for a couple of hours so they can go to the movies.

I worry that they will start to disconnect from their support systems. I worry that they will start out feeling like super-parents, but deflate when confronted with the burden that brings. I worry this will all be too much.

I worry that they will lose that hope for the future.

The little man, an update

The little man had an excellent appointment a couple of weeks ago. This particular doctor is part of the medical home clinic at our local children’s hospital and he operates as kind of a catch-all who coordinates our children’s hospital activities, gets everything to our regular pediatrician, and serves as a place to meet with multiple therapists/services at once. Great place. Love it. They tried to tell us we didn’t have to come see them anymore, but we balked at that. Even if the appointments are just check-ins, we get a huge benefit from them and have someone to call when we are having trouble dealing with the children’s hospital red tape.

This appointment was extremely productive.

#1 – the little man is off of his reflux medicine. This appears to have cleared up on its own with age and weight gain. We have to watch him to make sure he isn’t still having problems, of course, but this is a big step that cuts an entire medicine out.

#2 – the little man is off of his daily Flovent. He was taking the Flovent as a precautionary measure since a three-week stay in the hospital for respiratory issues three years ago. The dose had been slowly cut down and now it isn’t needed at all. Related, but not an outcome from his appointment, the little man hasn’t needed his emergency Albuterol inhaler in two years.

#3 – the little man is off of his nighttime pump feeding. This one is my favorite. The little man takes all of his meals through his g-tube. Until recently, he still received 16 oz. of liquid overnight through a slow feed. This is completely gone. We are all daytime feeding now and I really hope this will be a positive step in getting him to eat a significant amount by mouth. Plus, I just can’t explain how happy we are to be free of the tubes and pump at night. It is amazingly freeing!

What does this all mean? Basically, his ancillary medical issues appear to be clearing up leaving just your basic cerebral palsy behind.

Therapy news – we are talking about putting the little man in hippotherapy (horses!). I really think he would love it and there are some excellent programs in our area. There isn’t an easily accessible water therapy nearby, so this is definitely out next best thing.

Scary news – the little man is turning five in October, but since his birthday falls past the deadline he won’t start kindergarten until 2015. I’m terrified. This fall we are going to start checking out the program in our school district. If it isn’t acceptable, we will move on to look at other options. I don’t have a clue what we will do with him in the summers once he starts school. I have major planning to do. Everything is so easy now. His daycare is his therapy center, insurance pays for it, there are nurses on duty, they are only closed two weeks out of the year, etc. It sounds like everything is going to get significantly less-easy.

Exciting news – the little man calls me “mama” sometimes. It only took four-and-a-half years! He uses the “ma” sounds for a lot of things; most people think he is saying “mama” a lot, but no, he is saying “mine.” Sometimes though, he tries really hard and the “mama” comes out a little bit different, more like one solid word. When that happens, he is calling me. I love it.

Fun news – the little man has learned to say “uh-oh” when he drops something. It turns into an annoying game, but is so adorable you can’t help but play for a while.

D = Discomfort, or the Baclofen Pump Test

This week has been a little bit of a nightmare. D

The little man had this Baclofen pump screening test on Tuesday. Baclofen is a muscle relaxer that he takes three times a day to help with his muscle spasticity. It is a bit of a hassle because, not only does he take it three times a day, but it needs to be refrigerated. It also brings on a bit of drowsiness. It is also very important; without it the little man’s range of motion is severely decreased.

One option to consider is a baclofen pump. This is a small device surgically implanted in to the abdomen that delivers the medicine straight into the spinal fluid. Basically, it targets the exact spot we are trying to reach. There are many benefits and risks to take into account before deciding on a pump, but I don’t want to talk about those today. Instead, I want to share the details of our pump screening trial.

There isn’t really any point to consider a pump if you won’t benefit from it, so the first step is the screening test. We arrived at the hospital at 8:30 am. After the usual paperwork and vitals, the first step was for the little man to be evaluated by physical therapy to establish a base line. They filmed this test so there would be no question about his range of motions later.

Then comes the part that was awful. The nurse practitioner injected a small amount of the drug into the little man’s spine. There just isn’t really a way to make this a happy experience for a four year old. First they applied a topical treatment to numb him, followed by some shots for deeper numbness, but due to the nature of the test, he couldn’t really have any other type of pain medicine that might skew the results.

It took the little man approximately 15 minutes to calm down after the injection. Then we had to keep him as still and flat as possible for the next two hours. Not an easy task, as I’m sure you can imagine. Two hours later, the physical therapist came back to test and film him again. Thankfully, the little man responded marvelously to the medicine and this test wasn’t for naught.

We hung around for another hour or so, made sure he could keep some food down, then went home after a dose of Tylenol.

Then things got bad.

By 6pm it was clear that the little man had developed a spinal headache. This wasn’t something I had heard of before, but apparently when the pressure in your spine gets out of whack, the resulting headache like pain is unbelievably painful. From 6pm to 3am, the little man cried and cried. He slept in short thirty minute to hour bursts. Pain medication didn’t help at all. Finally at 3am, he settled into a more comfortable sleep.
I stayed home with him the next day and, after sleeping until 11am, he seemed to be feeling sore, but much better.

Thursday morning he was happy and we loaded him up and took him to school. 45 minutes later I got the call that he had thrown up four times. When I got there to pick him up, all the color had drained out of his face. You could just see how bad he felt.

I took him home again and started a delicate battle of trying to keep him asleep so he wouldn’t throw up again before dosing him up with anti-nausea medication prescribed by the neurologist.

This was rough.

The Little Man, an update

I spend a lot of time on this blog talking about the big picture items related to raising a disabled child. I talk about the doctors, the challenges, the stress, the appointments, but I don’t really spend a lot of time giving you all an everyday update on the little man. So, here we go.

The little man has seen some small improvements lately. His speech therapist began a new series of exercises a little over a month ago leading to an increase in his range of sounds. We have been hearing all new constant sounds coming out of this mouth. This is excellent!

In addition to the new sounds, he has a variety of words/sounds that he uses consistently. Here is his list: hi/hey, bye, mine/me, yes/yeah, ball, bubbles, high five, [fist] bump, his sister’s name, the dog’s name (he calls both dogs the same name), bite. He uses “mine” more as a question – i.e. “Can I watch my show? Can I have my ball” etc. Also, He is very good as making a “ba” sound for anything that begins with the letter b and says “mmmmm” when he likes a taste with the zeal of someone eating for the first time.

His speech therapist is also working on chewing and pushing out his tongue. The little man understands how to bite, but he doesn’t really chew. She is encouraging him to bite a certain number of times in a row using flavored sticks and gummies wrapped in gauze. He loves the sweet taste, of course, and sometimes cooperates. The tongue is a bit more difficult for his. Pushing it out past his teeth is a challenge, but she has succeeded in getting his to consistently stretch his muscles by putting a flavored tongue depressor on his lips.

The little man expects an audience when he does his therapy and insists on bubbles when he finishes the task. He is also a sneaky little guy who likes to show off by doing the exact opposite of what you are asking.

People always ask if our daughter is “good” with the little man. Well, she reacts to him the same way she would react to any four year old. Sometimes she will humor him and play a bit. To her, he is usually annoying, but great to cuddle. It is awesome to make him laugh, but she tires well before he does. Just because he is disabled doesn’t mean our household is free from hearing “Be nice to your brother” “Don’t smush your brother” “Give that back to your brother.” I consider this a great success. Yeah, she knows her brothers limitations, but treats him just like any other kid. Sometimes, she gets a perk – he can’t follow her down the hallway and burst into her room. On the other hand, he tries to monopolize her sleepovers. It really is your typical sibling relationship, just with some adaptive equipment thrown into the mix.

Shots suck for the little man (and for me too)

Every few months we take the little man to see his neurologist and get Botox shots. These appointments are absolutely horrible and this mom almost can’t handle them.

So first, I’m sure you have all heard of using Botox for fighting wrinkles (and make you look like a frozen-face if done by someone not-so-good), but you may not know about its uses for chronic illnesses. In the little man’s case, it is used to help muscle spasticity/tightness.

Here is how it goes down as explained by our Neurologist (in terms much more graphic than the people putting it into your face use, I’m sure). Botox is botulinum toxin A, the toxin that causes botulism. Botulism is a rare, but awful and sometime fatal, foodborne illness that causes muscle weakness and paralysis. When Botox is injected into a particular muscle, the botulism-style muscle weakness is targeted. Basically, when the little man’s brain sends weird confused signals to his muscles while trying to move a particular body part, that particular muscle is unable to respond. It is really crazy and I don’t like to skirt around the issue – it is a toxin and it weakens his muscles to the point they are unable to naturally respond to commands.

The injection appointment starts with a run-down of the possible side effects – mainly allergic reaction and other typical shot side effects, plus the rare possibility that the toxin attacks the entire body leaving him unable to breathe (always possible regardless of how many times you are injected). Then we sign the waiver and prepare for the horribleness.

The little man’s injections usually target his legs (although this can and will change depending on where he needs it most and where his therapists are concentrating). This means we have to hold him face-down on the table with one parent at his head and one parent at his legs. He is fighting and screaming at the top of his lungs by this point. Then the doctor and someone else nearby take their places on either side and give the injections (4 total for the little man in groups of 2).

It is awful for him and it is awful for me. All I want to do for the rest of the day is cuddle with him – not possible because I usually have to go back to work and he has to go back to school. I try to do everything I can to help the little man with his disability, but I really just hate to put him through some of this. It is hard to be strong when he cries.