Monday, November 30, 2009
In the last few days I've read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication--mostly because it never seemed to help us--but I was always told my doctors that the medication is safe and never told about any side-effects.
If there's one thing I've learned as Charlie's mom it's that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn't decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.
I'm sharing that story because I want to be clear that I'm no doctor and I'm no expert. I'm as confused as anyone else about the right things to do for my child.
But I also think that it's time we "Special Parents" started asking some tougher questions. I myself can think of at least four different questions I've never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?
This doesn't mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child's best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie's heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.
I know this parenting thing is never easy. I know we're all doing our best. I also know that for me, I'm going to try harder to be informed about the medications that are recommended for Charlie. I'm also going to try to limit the use of medications for extended periods of time.
OK, stepping off my soap box now--don't forget to enter my giveaway to win free art or stationery! If you don't want it for yourself, it would make a great gift.
Saturday, November 28, 2009
Thursday, November 26, 2009
As I've mentioned before, we began weaning Charlie off of Phenobarb a few weeks ago and switching him over to Keppra. We weren't having a problem with seizures, but I was concerned that he was a little mellower/sleepier than I thought your average two-year-old should be. Also, when not actively engaged, his eyes often had a glassy/half-mast appearance. I didn't know what effect the medicine was having (if any), but many parents reported problems with lethargy and Phenobarb, so I thought it was worth investigating an alternative.
I am SO glad that we did.
Don't get me wrong--things aren't perfect, but it is soooo much better than where we were before.
The first three nights after we started the wean, we saw a few jerks--like when you're dreaming and then you think you're falling. I did a lot of googling and couldn't get a real clear answer on whether or not this is considered seizure activity. Those have gone away now.
Charlie is now sleeping less and he's more restless when he does sleep. He goes to bed on time and wakes up at the same time, but his nap has almost disappeared. It's a cat nap. For the record, the neurologist assured me that Phenobarb was no way affecting his sleep habits.
Those are the negatives. Ever the conscientious journalist, I want to give you both sides of the story.
The positives are really good. The first thing I noticed was that he didn't seem to wear out as quickly. After a rigorous PT or OT session, he could still keep his eyes open. Then, he started to become more visually attentive. The vision thing is cool. He looks around more often and with more purpose--you don't need flashing lights and music to get his attention. His eyes look brighter. I'm seeing less cross-eye when he tries to focus. The PT noticed his vision when she saw him earlier this week. He's also more interactive. He giggles more readily, but he's also quick to let you know if he's unhappy. I guess some people would view that as a negative, but not me. . . I want him expressing himself.
We're currently at 25% of his original dose of Phenobarb and pretty close to full-strength on the Keppra. I can only hope that the rest of the wean is as smooth. Do me a favor and knock on some wood, kay?
Tuesday, November 24, 2009
In addition to all this, the good folks at ABR are developing a new type of exercise--one that in test-runs has shown great promise. The thing is, it's weird. It involves a deflated playground ball and I feel totally odd using it. Right now I'm just doing general work with it--getting familiar--so most of those exercises are directed at overall trunk strength. My brother has demanded a demo, so here' s a quick little video of it:
What did I tell you? Weird lookin', huh? Luckily, these ABR people are good in the results department, so I'm not too worried about it.
We recently finished one year with ABR so in the next few weeks we'll be getting our yearly assessment. I'll let you know when we get it and we'll see how much progress Charlie's made in a year.
Sunday, November 22, 2009
Saturday, November 21, 2009
Tuesday, November 17, 2009
Monday, November 16, 2009
I love this thing.
It's a Gator Walker. Before we had a Rifton Pacer, which looks pretty much the same, but in real life it's much bulkier and has all these different parts. Charlie would just stand in it completely befuddled. In this contraption he's getting the picture much quicker. Seriously, I think I have a crush on this thing.
Tomorrow we have an appointment with He Who Loves Baclofen aka our Pysiatrist. I'll keep you posted. Also, I am now completely reminded of a little tidbit I've been meaning to share with you guys. A little while ago, when I was trying to make Charlie's appointment with the Physiatrist, I couldn't get the number of his pediatric group to come up, so I just googled his name. Well, wouldn't you know it, a link to his Facebook page came up and it's private but I was still able to see what has to be the goofiest picture ever. I laughed for a couple of minutes. You should try it--Google your kid's doctors. Maybe I'll enjoy my visit a little more if I just keep picturing him in a funny hat?
So, I'll let you know how the appointment goes, and I also promise to post some incredibly fabulous Charlie photos I took this weekend. Try not to get too excited.
Sunday, November 15, 2009
I'm happy that in the next few days I'll be working on a project that combines my love of art with my new-found experience with the disabled.
- Wrapping paper
- Green/eco-friendly holiday fun
And she means all the winter holidays--not just Christmas, so no worries if your family celebrates Kwanzaa instead of Christmas. If you're interested, please let Ellen know--her e-mail address is lovethatmax [at] gmail [dot] com. Your article will include a link back to your home blog and Nick gets about five million visitors a month.
Pictures taken at a Zoo 2 U party.
Friday, November 13, 2009
- The Cure Pity website brought to my attention by Felicity. If it doesn't make you smile at least a little then you might want to have your pulse checked.
- Winning this pair of earrings from Amy's giveaway--her sister made them and they are delicate and beautiful. And purple and gold, which is a big deal in my neck of the woods. My camera isn't doing them justice, but they are beautiful and only seven dollars if you wanted to buy a pair. Go check out her site--also, 30% of her profits go directly to charity work in Africa so you can look good and feel good.
- This post on Flotsam Blog--mostly because we are ob-sessed with Signing Time over here.
- This song by Cowboy Mouth--my favorite line being, "if you do it at all, then you oughta do it right." So true.
- We're headed to Plano next weekend to learn some new ABR exercises for Charlie. These exercises have been so good for him I'm literally dying to go learn some new ones.
- My brother and his fiancee are getting a puppy--she looks like a doll and I get to meet her this weekend.
- So far so good on the Phenobarb wean. Really, he's probably still got plenty of it in his system, so this isn't the biggest deal, but I like to look on the positive.
- Charlie met another goal in physical therapy--sitting (no prop) for twenty seconds. Next up: thirty seconds!
- Charlie's dancing:
Now go up there, click on one of those videos and rock out a little--it's the weekend!
Tuesday, November 10, 2009
She also asked other Neurologist questions although at this point I do think she trusts me to take care of Charlie and doesn't probe for hours. She was pleased to hear that his vision is improving and also that he could get himself up twelve inch step. She warned me that we would have to stay vigilant about his eyes--his at an increased risk of lazy eye since his eyes don't always function as a single unit. She also reminded me that he needed to be standing every day.
Sunday, November 8, 2009
When Charlie starts refluxing these days, it usually means that he's gotten some type of cold or other illness and in general his body just doesn't seem to work as well in these situations.
My first hint that something is amiss is that he'll start biting his forearm. I have no idea what the correlation is, but for some reason he bites his forearm when he's refluxing. If it goes on for a couple of days then he'll have a circular bruise on his upper arm from all the bites.
So about a week and half ago he starts with the arm biting and I assume he's picked up cold. His PT comes and as soon as we get him into standing, he refluxes exorcist-style. It was so bad that I cancelled our Feldenkrais appointment and took him in to see the pediatrician. Other than some weight gain (hooray!), nothing of any consequence was discovered.
So the reflux continued and I still had no idea what was causing it. I just kept thinking that it would run its course.
This morning, after nine days of reflux, it finally occurred to me to ask my husband if Charlie had been getting his usual morning dose of Slippery Elm. Hubby is very good about these things--that's part of the reason why he's in charge of them--so I had assumed that everything was OK in this department. Imagine my surprise when he said, "yeah, I've been meaning to bring that up--we've been out for a while."
Here I am, making appointments, making assumptions, having lousy therapy appointments, playing House, and all the while the answer to the reflux mystery was right in front of me.
Assumptions--they'll be the death of me yet.
Friday, November 6, 2009
The other day Hubby was talking about one of his co-workers kids--saying how much easier he thinks it is for him. He tells me, "they just bought him a car that he can steer." And while I'm sure that there are things that are easier when your child is typical, far be it from me to make any assumptions about someone else's situation. And honestly? These people live in an apartment. The idea of a two year old in a motorized vehicle in an apartment is horrifying to me. Think of the wall damage.
I'm sure I do it too.
The other day I went to our local, mostly-accessible playground for a birthday part with Charlie. I brought my MIL along because Charlie pretty much needs one-on-one attention and I was hoping to catch up with some people I hadn't seen in a while. My MIL was on one of the big swings with Charlie in her lap and I was sitting at a picnic table alone, just watching them. A woman sat down next to me with her daughter who was at least five, with very low tone riding in a Maclaren stroller. You can never be completely certain, but I was pretty sure the child was disabled.
I smiled broadly at the woman and her child--excited to be around a fellow special needs parent. The woman ignored me. "Hello" I said in my warmest, friendliest voice. "Hello" she replied, resisting any sort of eye contact, keeping her gaze firmly on her other daughter and husband who were playing on the swings. I continued to look her way, trying my best to look friendly and open-minded.
In the end, I never really talked to her. She pushed her daughter away, and I never got up the courage to say anything else.
So I wonder. . . is the disability thing as isolating as it sometimes seems? Am I open to meeting other people who might be open to Charlie? Or am I too busy playing Mama Bear to give anyone else a chance? Do I sometimes miss an opportunity because I'm scared of being disappointed?
I'm not an eternal optimist. . . but I do play devil's advocate and I wonder. . . are there things I could be doing differently?
Wednesday, November 4, 2009
Well, I started drawing a blank on this one. I could completely relate to the term, but suddenly all of Charlie's little accomplishments seemed, well, small.
And, man, how easy is it to do that? To work towards a goal with your child, accomplish it, celebrate, and then immediately begin taking it for granted. Just because it's expected, that doesn't mean that it isn't amazing and beautiful. It doesn't mean that there isn't some other parent who wishes that their child could do that. Sometimes we're hurrying so quickly towards the next goal that we forget to really celebrate the ones we've achieved.
So this might not count towards Candace's contest, but today I'm just going to list all the things that Charlie's accomplished. The things that I take for granted, but that many people thought he may never do. My miracle list:
- His heart beats steady and true with no medications.
- He swallows thin liquids easily.
- He takes every meal by mouth.
- He eats food of all kinds with no problems.
- He self feeds (with his hands).
- He holds toys in his hands.
- He plays with toys.
- He sees.
- He tracks moving objects.
- He rolls in both directions.
- He grabs his feet.
- He prop sits.
- He laughs.
- He drinks from a cup (very messily)
- He reaches for items of interest.
- He commando crawls.
- He watches TV.
- He rides in a grocery cart.
Yes, these are basic things, but they're the kind of things that we never knew if Charlie would accomplish. Life is never what you expect, but isn't it wonderful when it's surprising in a good way?
Monday, November 2, 2009
- All the wonderful advice and encouragement I receive on my last post.
- Charlie can now sign "cup" fairly consistently. He's still doing it mostly when prompted, but at least twice now we think he's done it independently. Progress!
- Charlie's right hand, which is usually fisted when he's awake, is starting to open up. He's even managed a couple of normal claps which he's never done before (usually it's more like he's slapping a fist).
- Charlie has started taking steps with his left foot. We still have a LONG way to go in the walking department, but this feel nothing short of miraculous. Walking of any kind feels like a complete bonus--we were assured he'd be in a wheelchair and it just surprises me that he may also be able to get around the house on his own.
- I found a girl who wants to sell my stationery and custom alphabet canvases. She's a local entrepreneur type whose been super-successful selling in other people's stores and now she's opening her own little boutique where my stuff will be available on a comission basis. I'm sooooo excited to be working with her. So. very. excited.