Tuesday, August 30, 2011

Good As New

After a five day course of antibiotics and steroids, Collin is his happy self again, much to our relief. Before he became un-contagious, he was sure to pass it on to me, so we've been confined to the house, but we have still managed to have fun, as you can see.





In a way, I'm glad Collin passed his bronchitis on to me. It ended up being an interesting comparison. I was able to take all of the cold/cough medicine I desired and have significantly better muscle tone to make my coughs more productive, but I still ended up at the doctor a week later with the same diagnosis AND the same prescribed medicines.




That means our little Collin is one tough cookie and his immune system can handle itself just fine, thank you very much. We knew this, of course, but it was still very reassuring.






Tuesday, August 23, 2011

Update

It's a good thing we went to the pediatrician when we did, because Collin has bronchitis and the early stages of pneumonia (wheezing and debris sitting in his airways). He is on a steroid and antibiotic for 5 days and if we haven't seen marked improvement by then, we'll be on to a nebulizer. He is still in good spirits and seemed even chattier than normal today, so I'm hoping that these meds will be enough to do the trick.

Sunday, August 21, 2011

State of the Collin Address


Here's an overview of what's going on with Collin right now:

1. Collin is sick
Last Monday, Collin started running a fever and by Tuesday morning he had started coughing. Chest congestion is a big deal for kiddos with low muscle tone because it is difficult for them to cough hard enough to get it all out, making them a high risk for pneumonia. We felt like he was doing a pretty good job and he hasn't seemed to be in any distress, but now we're a week out and he seems as congested as ever, so we will be heading in to the pediatrician tomorrow to make sure we're not dealing with something more serious. All of the coughing and congestion has led to an increase in retching, which also makes everything a little harder.

2. Collin is up to his full dose of growth hormone
We finally got Collin's preservative-free growth hormone and started titrating up to his full dose back at the beginning of July. The only side effects we've seen is some sleepiness with dose increases. He has been a rockstar with the shots and his growth curve is looking good. We go see the endocrinologist on Thursday, so we'll get his verdict as well. Jury is still out on whether it has had or will have any effect on Collin's muscle tone or strength.

3. Collin has BiPAP
The result of Collin's sleep study back in May showed that he would benefit from using BiPAP in his sleep. I'll give more details on this when we actually start using it. It took weeks to figure out that we were not getting approved for BiPAP because it is not technically FDA approved for kids under 40 pounds. We finally found a place in the Cincinnati area who would provide to us, got the machine, and then immediately lost our power for over three days (the machine does not have a battery backup yet). Right before the power came back on, Collin got sick and you can't use BiPAP with a stuffy nose. But we do have it and are interested to see whether it is a huge help or a complete disaster when we start it up.

4. Collin is using his vision
Collin's CVI has made a marked improvement over the summer. He can track things horizontally very consistently - and they don't even have to be light-up or shiny! He also fixes on people's faces when they are talking to him. We were excited enough about all of this, but then we also realized this week that the improvements go beyond even what we thought. I have been using a bulb syringe to suction Collin's mouth during this virus and sometimes it really tickles him. I was reaching toward his face with the bulb syringe Sunday and he started laughing! I thought maybe I had touched his mouth with it, so I tried again, with the same response! I had a great time trying to sneak up on him with the bulb syringe, only to have him spot it and break into chuckles. He has also started turning his head away when I approach with his saline squirter. This means that Collin is able to SEE objects, RECOGNIZE them, and KNOW what they do! That's amazing! Of course, it's inconsistent, as most things are with CVI, but it's a huge developmental step.

5. Collin's Michelle P helpers have started back after our summer break.
It was a long summer full of upheaval and lots and lots and LOTS of Collin and Mama time. It was such a sweet time for both of us, but Collin was very happy that his good friends Amy and Heather started back last week. He loves his time playing and doing therapy with them. We are so grateful to have two women who know Collin so well and who we can completely trust with him. And we are so, so thankful to have received a Medicaid waiver that allows us to pay them. It makes all the difference in our home.

More to come!

Wednesday, August 10, 2011

Special AND Simple?

A few years ago, my good friend Jessica gave me some photocopied materials from a course she had attended on Voluntary Simplicity. The idea behind the class (and the movement it stemmed from) is to choose a simple life in the midst of a culture that is anything but. The benefits of such a lifestyle are far reaching and span from a more positive environmental impact to personal contentment. As I read through the packets, I felt myself connecting with what I found there and started talking through some of the ideas with Kyle (it was not a hard sell): Limit your choices. Choose quality over quantity. Buy only what you need. Share your excess. Concentrate on simple pleasures.

And then Collin came along.

We had thought it was hard to live a simple life in a consumer-driven culture in which shopping is used as both therapy and entertainment, but we had no idea what we were in for. Children bring a new dynamic to the material possessions issue, and Collin added to that a whole slew of heart-wrenching, overwhelming special needs that operated in a vicious cycle that prevented him from getting ahead in any area: You motivate kids who have motor problems by using visual incentives - but what if they can't see? You help kids with visual impairment adapt to their world by teaching them to explore it physically - but what if they're physically incapable of doing so? So if ever there is a possible solution to break through this frustrating, hope-squashing circle - especially a possible solution you could go out and buy!!!!! - who wouldn't leap at the chance? We sure did.

Therapists brought toys and tools and equipment. I trawled the internet for products that might solve any of our many practical day-to-day issues. Some worked. A lot didn't. But a whole string of flops could never kill the buzz I would get when I found something that might make a difference to Collin and clicked the button that would send it across the country to my door.

If I'm honest, what I was really buying was not another light-up toy or fancy spoon - it was the feeling that I was doing something that might, just might, 'fix' what was wrong. It seems silly when you read it in black and white, but it's a powerful thing when you're grasping for any kind of hope you can find.

So, when we moved our entire upstairs downstairs to embark on the dreaded Home Renovation of 2011, it should not have been a surprise to us that our house was overrun with unused products of all kinds. And as I started to sort through things, I found myself revisiting the ideas from Voluntary Simplicity and wondering, Is this even possible for us?

I think the answer, like most things for our family, is, Yes, but it will look different than it might for others.

Now, I have to say: if we hadn't taken risks, we would never have gotten the iPad, which has changed SO MANY things for Collin in terms of fine motor and cause-and-effect comprehension. We would never have gotten the HuggaBebe, which enabled Collin to swing at the park or ride in the shopping cart.

BUT. We're far enough along in our journey now that we can see trends and ask ourselves thoughtful questions before we buy any old thing that may or may not spark some kind of connection for Collin: Does Collin really need this item, even though it is 'adapted'? Has he tried other things like this in the past? If so, how did it go? Is it worth another try? If so, do we still have the original to try with? If not, do we have something similar that we can try first to gauge the response? And we do the same thing with items we already have: When was the last time Collin used this? What was his response? Does he respond now? Is it worth putting away and trying again later? Can any of these items be used for multiple purposes?

Or here's a tough one: Am I hanging onto this for personal reasons? That's a biggie for me. When all of your dreams change, some are harder to let go of than others. There is an amazing Radio Flyer tricycle in the basement that I can pretty much guarantee Collin will not be able to ride on his own. But I am going to put that boy on that tricycle somehow and push him and take a picture of him smiling on it and then pass it on to someone else. Not because Collin couldn't do it, but because he will be done with it.

The result of all of this thinking and asking is that we have a less cluttered, more thoughtful home now that contains only the things we actually use (although it is, of course, an ongoing process). That means fewer items to keep up with and maintain, less tidying to do, and consequently more time and money available for us to share with others. And Collin is definitely not bored or deprived. That old wisdom about kids preferring to play with the box the toy came in rather than the toy itself is even true for kids with lots of special needs. The point of the saying is that kids appreciate the simple pleasures. Collin's favorite toy is an aluminum pan full of dry beans. He loves to swing. He gets out-of-control-excited by flipping the lights off and on or hanging upside down. It doesn't get much simpler than that.

Here's a video of bean joy. He is standing in a very expensive piece of equipment, but we asked all of our questions before ordering it and it passed the test.

Beans! from Annie Kratzsch on Vimeo.


Friday, August 5, 2011

A Happy End to the Stander Saga

For those of you unfamiliar with the perplexing and exhausting world of Durable Medical Equipment, here's how it goes: First, you establish a need for equipment - this is often done with the help of a therapist. Next, you meet with a representative from a DME company, who helps you and the therapist choose the specific piece of equipment that best meets your needs. At this point, the DME company takes over, contacts your insurance company (or companies), gets approval, orders the equipment, assembles it, delivers it to your door, and demonstrates how to use it. The whole process takes up to 90 days. We started the process on this little beauty, which we received 2 weeks ago, at the beginning of October. As in October 2010. Fire up your mental abacus and you will figure out that we should have had it at the end of December or beginning of January at the latest. I won't drag you through the comedy of errors that accounts for the mind-boggling delay we experienced. Suffice it to say that we have it now, and it works.
The purpose of a stander is to help Collin's body get the benefits of weight-bearing that he misses out on otherwise. It aids in digestion, gives neuro-feedback to joints, and helps to form the hip socket. Plus, we have found that Collin doesn't often spontaneously develop a desire to do something different physically - he has to do it before he wants to do it. For example, after lots of supported sitting, he started to want to sit by himself. So, our hope is that after experiencing what it feels like to be upright and bearing weight on his legs, he will eventually want to stand in other situations.

As with a lot of things, Collin surprised us by being much better with the stander than we expected. Having never stood up in his life, we anticipated needing to start at only a few minutes of standing at a time and slowly work our way up. However, the first time in it, he tolerated over half an hour and now averages 45 minutes twice a day. The first time I saw him in it, I was shocked at how tall and little-boyish (versus babyish) he looked. We use stander time to get in some video watching, usually with pinhole glasses to develop his central vision. And as a reward for watching a whole video standing up, he gets to do his absolute favorite - play with dry beans. He pushes his hands through them and flings them all over the dining room, but I don't mind a bit. I don't get the chance to clean up after my 2 year-old the way many moms do, so it's a welcome duty.

Tuesday, August 2, 2011

Maybe My Favorite Picture Of All Time. Ever.

I'll be referring back to this one whenever I need a happiness fix.

Be sure to click on it so you can get the full awesomeness.