Friday, October 16, 2009

Date Night with David

Tonight I took David to see our local congregation's production of Joseph and the Technicolor Dreamcoat. They did a fabulous job and I laughed so hard!

After the play, I took David and his friend, Parker Casper, out for chocolate fondue. It was really fun! They are both such good boys!

Thursday, October 15, 2009

Wanna Adopt a Duck?


If your reading this, you probably also received an email from me today asking for money. I wish I could have visited everyone in person to ask for help, but time doesn't allow for that luxury. If you didn't happen to receive an email from me, then consider this your invitation to help. I hope you'll consider adopting a duck.

We have been very blessed to have the help of 4 amazing therapists. Brighton Center currently provides us with Vision Therapy, Occupational Therapy, and Physical Therapy, and next week we'll be starting Speech Therapy. I can't imagine not having the help of these ladies. They work hard each week to strengthen and encourage Ryan, and they have supported and uplifted me.

Now each of you can help make it possible for them to continue helping Ryan, and about 1400 other children.

Brighton Center, the non-profit organization that provides free therapy for Ryan 2-3 times each week (and helps about 1400 other kids) is having a fund raiser next Saturday, October 24th, their 3rd Annual Duck Race & Family Festival. While I’d love to have you join us at the festival, what I’d really appreciate is your money. Would you be willing to adopt a duck, or oodles of ducks?

Here are the details:

You can adopt:
a lone duck for $5
a family of 5 ducks for $20
a flock of 12 ducks for $50
or oodles of (27) ducks for $100

Your little yellow duck(s) will then be placed in the river for a race. Each duck is numbered and the first 5 ducks to finish the race will win a prize. Plus, there is also a chance to win $50,000.* The top 5 finishers will received guaranteed prizes with a combined value of $1,000. Your attendance is not required to win.

If you’re interested in watching the race and joining the fun, we’ll be at the Kohler Pavilion at Brackenridge Park on Saturday, October 24th from 10-11.30 am. All attendees will receive food, one raffle ticket, and some family-friendly fun.

If you’re willing to help me out in raising money for these great people who have been so helpful to Ryan, send me an email or call me and let me know what you can do.

There are 3 ways to pay:

1. You can mail a check (written out to Brighton Center). Call me if you need my address.

2. You can pay me cash. Let me know and I’ll pick it up from you.

3. You can pay by debit/credit card. Let me know that’s what you want, and I’ll call you to get your information. Please for your security, do NOT send it via email.

(Your donation is 100% tax deductible.)

Every duck will help! Thanks for your support!

*The $50,000 prize will be given if the duck with the preselected number crosses the finish line first!

An update on Ryan

I thought since I'm asking everyone to help raise money for Brighton Center that I'd do a complete update on Ryan.

Where to start? I suppose the top is the best place.

We have been working with Dr Seals, Ryan's Neurologist, to get the seizures under control. You may remember that he was having 60-80 myoclonic seizures in about 20 minutes almost every day. I'm happy to report that with the current medicine cocktail, he is now only having about 2-5 myoclonic seizures each day. We will be doing another MRI in about a week. We hope to get a clear picture of his brain so that the doctors can determine if there is a definite cause of his delays and issues. We suspect he may have mylenation issues and/or polymicrogyria.

Ryan still meets all the medical requirements to be diagnosed as having Cerebral Palsy. However, CP is an umbrella diagnosis and we don't want him to be labeled as having CP until we have really determined everything we can.

Ryan is now using his eyes more than he used to. They both move together for the most part, but he still doesn't see well in regular lighting. In a dark room, like our therapy room, he obviously sees and has a preference for his green toys. We don't know if he can't see the other colors or if he just refuses to acknowledge them.

His tolerance level for therapy has increased. In the beginning, Ryan would just pretend to sleep during therapy. He now will fuss a bit when things are hard, but he'll keep working. This has helped us to make some real progress. Ryan can now hold his head up fairly well, but tires easily and still prefers to lean his head to one side. He is now using his tummy and back muscles to help himself sit but can't sit without assistance. Ryan now likes to hold on to stuff, but can't move things very well with his hands. He can now (awkwardly) reach out to touch stuff. and has certain toys that he really likes to touch. (He still loves his Koosh ball the most!) He uses his legs to kick some now, but still doesn't bear any weight on them.

The submucous cleft palate, enlarged adenoids, and mild septal deviation seems to be of no concern. He no longer sounds like a lawn mower when breathing, and consequently can sleep through most of the night now.

He is still being treated for GERD (reflux). In fact, I just called the digestive dr today because I don't think we have his medicine at a therapeutic dosage. He seems to be having problems with reflux again.

As for eating, he is currently using Neocate 1+, and boy does it stink!He drinks it better if I add a couple of drops of Williams-Sonoma's vanilla bean gel. He now takes about 4-6 ounces at a feeding and eats about every 2 hours during the day. We are still trying to get him to take "solids". He simply won't swallow them.

I think that covers all the medical stuff. Ryan is almost 15 months old but is 3-4 months old developmentally. He is getting stronger and more vocal every week.

Wednesday, October 14, 2009

So Dwight and I were on our way out for a date. Kids started asking the normal questions ... where are you going? when will you be home? I said, "We're going on a date so we can make out." End of questions.

A couple of seconds later, my 7 yr old, Johnathon, said, "When I'm older I'm going to go on dates and make out." Oh, wrong message. So, Dwight replied, "You can do that when you get married." Deborah started happily chanting: "I'm gonna get married and make out."

Sunday, October 11, 2009

New Therapy Room & New Toys

I know I've mentioned before that we finished the new therapy room, but since some of you have asked me about it, I thought I'd post some pictures.

You probably remember that Ryan has Cortical Vision Impairment (CVI). CVI means that while Ryan's eyes seem to work physically the way they should, he doesn't focus on anything. It is believed that while he can "see", his brain is unable to interpret the images. The good news about CVI is that it is also believed that vision can be taught.


As I understand it, the brain "sees" in 3 different ways: light, motion, and color. We know Ryan sees light, as he is what's called a "light gazer". This means that if there is a source of light in a room, he will look in that direction and stare at the light. We also know he sees some colors, as he has a definite preference for neon green objects. If I show him an orange slinky, he'll ignore it. Same with the pink, silver, or yellow slinkys. But, when I show him the neon green slinky, he'll follow it with his eyes.


So, why the black walls? Let's first pretend that I've asked you to meet me at a big stadium for a sporting event. (You can pick the event.) If I say, "Meet me at the game." Will you be able to find me? Probably not among the thousands of people, right? But, if I say, "Meet me at the game. I'll be wearing a neon green shirt and sitting on the side of the stadium that is empty, AND there will be a big spotlight on me." Would you be able to find me? Definitely, right?

Well, by putting Ryan in a room with black walls, and showing him only one brightly colored object highlighted by a light, we eliminate all the other distractions. This gives his brain the best shot at finding the object. It is believed that we can in this way teach him to see one object, then slowly add additional objects. We have definitely seen some results from his vision therapy.

You might remember that when we first started, Ryan ignored everything. Then it would take about 5-10 minutes of showing him one object before he would seem to look at it. Then he started following the object from side to side. (He still doesn't follow the objects up or down.) And, now, he actually reaches out for the objects.

So, I thought I'd show you some of our new toys. Have I mentioned that we have the best therapists ever? They are so creative and thoughtful. They bring the coolest stuff to play with. Here are just a few of our new favorites:

This is a toy that lights up and vibrates when pushed. Ryan likes to push it with his feet.


This is called a switch toy. Ryan likes to push this one with his hands. When he pushes on the squishy stuff, it vibrates, lights up, and plays music. I like that I can turn off each of the responses.


This isn't really a toy, I suppose. It's a therapeutic brush. We use this for a technique called, Brushing. (Creative name, right?) We rub this firmly on Ryan's legs, arms, and backs.
Think massage. Ryan loves it!

This are some fun toys that we use. The toy on the left glows neon green. We put the pumpkin in a middle over a pen light so that it also glows green. And, the "toy" on the right, DeeDee actually found in the automotive section of a store, but it works great! It lights up really cool with a pen light or with the green glow stick. It's also the perfect size for Ryan to hold in his hand, which he likes to do.


If you've had a child in the past couple of years, you're probably familiar with the Bumbo chairs. We use this chair for therapy. We put Ryan in the chair. I help him stabilize his head by sitting behind him and placing my hands on the back of his neck or on his shoulders. (He's not quite as wobbly as he used to be.) Then we pull the table up as close as we can get it and put his hands above the table. (Ryan has a tendency to put his arms down to his sides and a bit behind him. So, it takes some effort to get him to put his arms up on the table, and to keep them there.) Then he plays the piano that his Occupational Therapist, DeeDee, brought him. He really seems to enjoy the piano. Recently, we've been using this light on the desk and it seems to help him last a little longer.


This is another great find from DeeDee. They are actually gift wrap ribbons. But they look really neat when a flashlight shines on them. Ryan loves to grab this toy and will hold on to it for quite a while.


And, last of all, these bottles. Our therapists made these from various things. They look REALLY cool when we set them on top of a little light. I tried to get a picture, but never could quite capture their awesomeness. I'm not sure who loves them the most ... Ryan or Jessica.