Tuesday, January 19, 2010

So It Begins

Over the last few months, we've had to make some tough decisions regarding the treatment of Sy's cerebral palsy. We are so thankful that CP is not a degenerative disease, but recently it's become apparent that unless some medical intervention {or a miracle} happens, Sy probably won't ever be able to walk without an ambulatory device. His hips, hamstrings and heel chords are extremely spastic/tight, which makes it difficult to balance, and in turn move forward.

Last summer, Sylas' physical medicine doctor recommended we try botox injections and serial casting to see if we could get his heel chords and hamstrings to loosen up a bit and get him walking on his own.

This was a difficult decision. As you may know, botox is a toxin and used in large amounts, can have serious consequences. At the same time, when given in appropriate doses, the use of botox has helped many kids gain more flexibility. {Click here to read why botox and children with CP are often a successful match}.

Oh, we agonized. For months and months. Sylas has been through so much already and we hate to put him through more. As he gets older, we want him to have a say in the treatments he wants to pursue. In how far he wants to go. But for now, those decisions are up to Ryan and me. It's frightening. It's humbling. We so badly want to do the right thing.

So. After lots of prayer and research, we did it. Last week Thursday, Sylas had his first series of botox injections into his hamstrings and the muscle above the heel chord (gastrocnemius). Being that as a family we're conservative when it comes to medicine {could had something to do with me getting pregnant with sextuplets}, we decided to give Sy only half the recommended dosage. It's been five days since his injections and already we can tell that his heel chords and hamstrings have more flexibility.

We'll start serial casting on Thursday and it will continue for 3-4 weeks. Honestly, I'm not looking forward to it. If anyone has any ideas of fun sitting down activities for a very active two and a half year old, I'm all ears.

20 comments:

  1. you are doing the right thing...i know it is hard, but you are doing what your heart feels is right. what is best for your child...and that can be hard for us i think as parents.

    sit down things...coloring, stickers...the girls love them, paint...anything around crafts would be good to sit at a table and do, if he will.

    i can't wait to hear more.
    blessings!

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  2. Try making him some play dough and making fake cookies with different cookie cutters. I made some for Layla the other day and we've been having tons of fun. If you can get him outside for a walk in a stroller with Ivy that might help break up some of the time too.
    So many tough decisions to make as a parent! I think you guys made a good choice on this one though.

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  3. Just a few ideas...lite bright, playdoh, finger painting, stringing beads/pasta onto string/yarn, anything with stickers or coloring crayons...foam shapes pre-cut (you can find them at any craft store) come with removable backings like stickers so you can make some pretty neat stuff. FisherPrice.com also has some really cool interactive toddler games (I'm sure PBS and some other sites like Hasbro do too). Lincoln logs, duplos...I'm sure most of this you've already thought of but I tried to think of things that we did when my daughter had a cast (broken leg) when she was two.

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  4. PLAY BLOCKS MY 2 YEAR OLD LUKAS LOVES TO PLAY BLOCKS LIL HOT WHEEL CARS. YOUR FAMILY IS IN MY PRAYERS.

    CHERYL

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  5. I have been receiving Botox injections for the last 4 months for a rare vocal disorder that I have. They have seemed to work. But when I posted on Facebook what I was doing, one of my best friends from high school posted that her son has CP and has also had Botox injections. I know he has done the casting also. The botox only lasts for a certain period of time before your body builds up a resistance, and her son wasn't able to do them for a long period of time (maybe 2 years). If you would like, I can give her your information to contact you. I'm sure she would be willing to help you with any questions.

    I'll pray that you make the very best decisions for your little man. He is so precious.

    Shannon

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  6. Fun painting ideas -

    1. Use a small bin
    2. Place a piece of paper in the bottom.
    3. Place a small amount of paint on the paper.
    4. Roll either play cars or marbles all around the bin.
    5. Sy would help you shake the bin back and forth, and he is left with a fun painting.
    6. Not too messy. :-)

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  7. My son had a cast on his leg when he was about 19 months old....from the foot up to the hip. We thought we would be in trouble but let me tell you! He learned how to walk with it and was even riding on his trike within days! Nothing can slow boys down! You might be surprised at how well Sylas will get around even with casts on! For what it is worth, I think you made the right decision!

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  8. Finger paint and play doh. You can make your own of both.

    Lots of messy, touchy stuff. Just start pouring things in a bowl. Cornstarch and water. Flour salt and water. It will be a great opportunity to teach him his colors.

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  9. I had serial casting on my legs when I was little...my mom's only advice to you would be to stand wayyyy back when pushing a shopping cart. Arm's length. Those things hurt. Other than that, hot wheels are pretty fun. Good luck!

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  10. Praying for succesful treatment for your son! I pray you get to see him run ( or at the very least toddle) around this spring with his baby sister in tow.
    We can never know the right thing to do with any certainty. We can only pray to hear God's wisdom, pray that our heart be made peaceful with the decisions we make. I can only imagine the struggle to have peace about a medical procedure for your child. In the end, Sy's best interest is in your heart, that is obvious. How ever this all turns out, I doubt your son will ever be disappointed he had treatments to be able to walk:)

    as for games- painting with finger paints is a classic as is a series of small containers that you can put different small toys in, he can open presents and surprise him self all day long- great gross motor skill development too! Memory cards are great too. Try asking him where the other hot dog is, that sort of thing. My 2 year old LOVES that.

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  11. behind you 100%!

    praying for you guys!!!!

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  12. I know this is one well thought out and prayerfully sought decision. That's just who you and Ryan are.

    Love you!

    Vicki

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  13. do you have a CVS near you? They sell these craft buckets for $4.99 that have all sorts of silly things, pom poms, sticker eyes, glitter glue, and so on. They're so cheap, yet Luke will sit for hours and make things!
    As always, you are in my prayers. I know you made the best decision, no matter how difficult it may be.

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  14. Try flat, shallow plastic bins with different things inside, beans, rice, pasta. Give him little cups, bowls, etc to play with in the beans and rice. The flat and shallow plastic containers are easy to use while sitting on the floor. Use a large quilt underneath to keep all the stuff off the floor. I hope the botox works wonders for Sy!

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  15. Sorry I don't have any unique ideas for creative ways to entertain a 2 1/2 year old. But my 18 month old was born with a club foot and we did serial casting to move his foot back into the correct position so I have experience in that area. Good luck!!! :)

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  16. my twin sister has cp and she has had some botox injections for her arms and it's so surprising how well it works and what a difference it makes!

    hope sylas continues to do well! you guys are in my prayers!

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  17. A friend of ours whose son is autistic and a toe walker had the botox injections and the serial casting last summer and it helped a ton. He had very little flexability and his heel cords and everything were so tight from years of him walking on his toes. He now can walk almost flat footed and they actually got him to a 90 degree angle on his left foot!! I pray that it really helps Sylas like it helped our friend's son.

    Sitting down ideas - books, coloring, finger painting, playdough, cookie cutouts. Although you might be surprised at how adapt he still is at getting around with the casts.

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  18. Indoor snow play. Scoop up a bunch of snow and put it in large mixing bowls, baking pans, cookie sheets, etc. Put several large bath or beach towels on a table (helps with clean up) and place the snow-filled containers on them. Give Sylas utensils (melon baller, spatulas, measuring cups, funnels, etc) to play with in the snow. My kids like to drive their Match Box cars in the snow and make tunnels. And as the snow slowly melts Sylas can build towers and little snowmen. My kids have done this for years especially when they are sick and are unable to play outside. A few tips: place a few towels on the floor to catch the inevitable drips and snowballs, and he will probably have to wear mittens at least for some of the time. Have fun!

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  19. sweet friend. you are the very best kind of mama.

    so thankful that you're already seeing positive results. i will be praying about his castings. that he tolerates them well, has wonderful results and that he can be content with much more sitting down play!

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