Wednesday, April 23, 2008

Update on Charlie



A lot of people have been asking about Charlie so I thought I would post what has been going on with him on here.
We've been working with several therapists to improve his speech, behavioral problems and his sensory issues. I don't know how well they are working. I just keep doing it because I don't know what else to do. Every Tue and Thur, we have a group therapy/playgroup with other kids. I feel like he has improved in his group behavior in this particular setting. I don't really see improvement in other group settings but we'll keep trying. I ended up crying during the first playgroup, made it out to the car before crying the second playgroup and I don't even really feel like crying during the playgroup these days so it must be getting better, right? :)
We have gotten some interesting ideas from the Occupational Therapist for his sensory problems. A lot of times, if we spin him around or do something really physical with him before changing his diaper or trying get him dressed, he will put up a lot less of a fight. This is nice to know because Matt, Winston and I have recently finished healing from all the scratches and gouges on our hands, backs, arms and faces from when Charlie gets upset. I think I got a couple more on my face today when he got upset but nothing too bad. There are a number of things like that she gave us to try. Hopefully some of these ideas are going to help make life a little smoother. *crossing fingers*
Charlie was tested for the special education preschool that will begin this Fall. The testing went as expected. The maximum number of days a child can qualify for is 4 days. That would be for a child that really needs help. Charlie qualified for 4 days. I expected it and I'm really grateful he will get so much help. They have in class therapists and the teacher is supposed to be amazing. One of his current therapists said she has seen some fantastic changes in kids that have gone through this preschool program. However, it's hard to think about sending my little Charlie off to school 4 days a week without me. He still seems so little and I want to be there to comfort him and help him. I'm really emotionally torn but I do think the preschool is going to be good for him. The whole thing just sort of feels like someone is twisting and pulling on my heart and it hurts . I try to be optomistic like Matt but I think it is harder when you are the one home with your child 24 hours a day. We'll see what happens.


He's a sweet, sweet little boy but he just has a lot going on in that little body of his. We have decided it will be best to try a new seizure medication starting at the beginning of May. I know it is probably going to turn our lives upside down (even more) with the side effects and trying to find the right meds but we've got to get the seizures under control. We've tried everything else we can think of without success and we are back to the medication route. Several of his therapists think that if we can get the seizures under control, a lot of the other things will improve. They are wreaking havock on his little body. Keep him in your prayers if you can. Thanks to everyone for all the love and support through this.

14 comments:

Josie said...

Steff, Interesting about doing something physical before changing his diaper. There was a little boy we knew in Chicago who had ADHD severely. His parents had tried so many meds that hadn't worked and were so frustrated. One doctor suggested that he take 2 breaks in the school day and bounce a bball 100 times. It totally worked for him and afterwards he could concentrate again. I guess you never know so you try everything and just don't give up. You and Matt are doing great and W and C are lucky to have you! Hang in there.

Kristen said...

Steff,
You are an amazing mom and I think both of you stay very positive. I think the hardest thing about being a mom is seeing your kids in pain/trouble and feeling helpless. That's great you're doing playgroups and maybe you can be the "room mother" for the preschool. You guys are the best; we pray for you and we love you lots!

Shawn and Lily said...

Matt and Steff- Wow, I had no idea your little guy was going through so much and also you two! Hey we can't forget little Winston either! Keep your chins up. We'll keep Charlie in our prayers. Let us know if we can help okay?

Keri said...

Like I said earlier today, you really should be the mother of the year! Your boys are so blessed to have parents like you who love and care for them so much!

Aaron & SherRae said...

Hang in there Steff. We'll be thinkin' of you up here in Washington!

Angie Penrose said...

You're such a good mom! Charlie is so lucky that he has parents like you guys that love him like you do. He's such a cutie! You'll be in my prayers!! Love you. :)

Let Your Hair Down said...

Hello! It Lizzy Rigby again (Rob's sister) Anyway, I thought i check your blog again tonight for updates on your cute little guy. I think about you guys all the time. We are staring to wean our daughter off her meds because they are hoping she has grown out of her seizures (we will see) anyway, until she was on the right meds she was pretty far behind-like not rolling until 9/10months those types of things. For some reason as soon as we started her on her meds she made such a huge turn around. The next day she started to roll and within a month she crawled and started to walk-all within a month. I guess they said she just had so much going on in her little head and it needed to settle down to start progressing. I hate having to rely on meds, but they have helped her and me a ton. We will see how she does off of them. I know situations are so different, and I know it is just so hard, but you are doing so well. You are so postive and i admire that. He is a sweet little guy! We made our blog private so if you would like to view it you can email me at lizzyrigby@hotmail.com
good luck!

d/b/c/m said...

you are so patient, hard-working, loving and dedicated! we'll pray for him.

he's so adorable!

Cammi said...

You are an amazing mother! I've always thought so - you are both doing a wonderful job raising your children and I pray for your little one.

If you ever need a break, please call - i'm only a block away :)

Shane & Michelle said...

Steff, he is such a handsome little guy. It must be so heart breaking for you to see your little son go through this. I commend you for being such a strong mommy for him. You are in my prayers!

Melanie said...

Wow, Steff! I didn't realize how difficult things were with little Charlie. What a lucky kid to have such a great Mom who is willing to do anything to help him.

Megan & Shawn said...

What a sweet little guy! We think so highly of you and Matt's patience and optimism. You are great. Hopefully the medications will help - good luck.

Tammy said...

I am so glad to be able to read all of this. I had heard from you guys a while back about Charlie and all the different things you were trying, but hadn't heard since. I am glad to hear that you still have plenty of options. You guys are doing so great with everything and crying is NOT a bad thing. We all need to cry a little sometimes! I hope to be able to stay updated on Charlie because I really like to be able to stay connected with our friends. We hope for nothing but the best for you guys and Charlie. I am sure it is also hard for him. Just think of the school as a fun way to break up the week. You have him 24/7 and it's ok to take a break. He is a good, sweet kid. We'll be praying for you all. Good luck!

Julie said...

thanks for the update. that little doll! you are a great mom. its okay to cry sometimes! :) keep us posted on little charlie poo.