Our life - different - but wonderful

3rd Grade

Wed, 7 Sep 2011 20:41:17 -0500

Caroline started her 3rd grade year in the Autism program at her school. After starting the program I just know she needs more. I want her in the 3rd grade classroom more. She got tutoring all summer (about 4 hours a week) and I saw her potential to learn. I talked to her teacher and school staff last week. The teacher has been testing her to see where she is after the summer and as it turns out she is almost a whole grade level above where she was at the end of last year. Amazing!!! So - the school is trying to figure out what to do because she no longer fits in her current program - this is so cool. I really do believe that the minocycline has a lot to do with her improvement. She learns so much faster. I have seen improvements that I never thought possible. God is good - God and Caroline continue to amaze me!

the end of the summer

Thu, 11 Aug 2011 21:34:40 -0500

I’m getting some paperwork together to go to the new Fragile X clinic at Children’s hospital tomorrow. I was looking at past speech therapy evaluations. In 2007 Caroline was in the 1st percentile for receptive and expressive language. In 2008 she was in the 14th percentile for receptive language and the 4th percentile for expressive. I remember celebrating the fact that she finally made it out of the 1st percentile. We started the minocycline in 2009 and this past spring Caroline had a school evaluation where the speech and language pathologist scored her in the low normal range for receptive and expressive language. Amazing! Granted she still has difficulty saying what she wants to say and she still says random things that nobody knows what she is talking but, wow, she has come a long way. She continues to get speech therapy along with tutoring. Her school skills are improving but still behind. She starts 3rd grade this year and is still in a self contained class most of the day with other students with autism. But, some of her work is on 3rd grade level. Math is probably the most delayed which is not a surprise.

It’s fun watching you my sweet Caroline - keep up the amazing work! let’s have a great year!

The end of the school year

Wed, 18 May 2011 12:00:26 -0500

Caroline has had a great year! Her occupational therapist told me that Caroline has grown by leaps and bounds and she continues to be impressed by Caroline’s improvement on the minocycline. Caroline is reading almost on grade level and has made such progress. We are so proud of her. We tried Zoloft but it didn’t seem to go well. It seemed to make her more anxious. We saw a dramatic increase in hand flapping which we hadn’t seen in such a long time. I asked Caroline how she felt on the new medicine and she said, “I feel like I want to dance everywhere.” And that is exactly how she was acting. We took her off and things seem to be getting back to normal. Not sure what happened. We are looking forward to a great summer!

Great Year!

Fri, 31 Dec 2010 12:50:53 -0600

Overall this has been an amazing year for Caroline - great progress in school and at home! She has come so far...I am so blessed to have her in my life...she gives me motivation to help her and to help others. I think that the minocycline has helped her so much and continues to do so. Her teachers and therapists continue to be amazed at her progress. Her school OT that has been working for many years said she has never seen a child make so much progress in such little time. Keep it up girl!
Happy New Year...we’ll see what 2011 brings...we pray good for all...

“I’m going to be a famous helper...”

Sun, 29 Aug 2010 22:12:55 -0500

Tonight at Walmart Caroline said, “I’m going to be a famous helper someday”. She probably will be!
Love that girl!

Another year begins!

Tue, 24 Aug 2010 20:31:07 -0500

Another year begins. Caroline has a new special ed teacher. We are having a meeting next week because they need to set new speech and language goals for her. We met last March and made yearly goals but she met the goals by May! So - we are meeting again! I truly believe the minocycline is helping her so much. It’s amazing to watch!

Raise money for Fragile X research!

Mon, 16 Aug 2010 21:45:57 -0500

Fragile X researchers are so close to developing drugs to help our kids. We live with this every day and pray that the researchers keep trying, that the FDA will approve, and that our kids will get the help they need. Please help too! Research takes money - unfortunately a lot of money and any amount in donation is appreciated. Appreciated especially by parents like us that want so desperately to help our kids and feel it is out of our hands and we have to wait - please help speed up this process and help our kids:

Donate to FRAXA

Here’s how:

http://www.fraxa.org/donate.aspx

They are a great organization and don’t forget your gift is tax deductible!

Thank you - Thank you

Ready for 2nd grade?

Mon, 16 Aug 2010 19:26:46 -0500

2nd grade starts next week. I’m a little mixed about my feelings about this because this year they (the school) have taken her out of all regular classes for 2nd grade except specials such as music, PE, etc. and lunch. She really does learn better in a small group and needs 1:1 instruction most of the time to learn but I still am a bit sad about it. I also believe she is going to have a new special ed. teacher. We will have to see how that goes. I know Caroline is going to want to be with the other kids in the regular class so it’s going to break my heart when she gets upset she’s not in there.

Regarding the Minocycline: we are still on it - I’m giving it to her every day now. It seemed we started getting decreased effects giving it every other day. No data taken but it seemed that way because of more outbursts so we put her back on it every day. I think it’s helped. I really should take more data to see if there really is a difference. If I try every other day again I’ll try to take some data before and after. I have noticed more light sensitivity lately because she is asking for her sunglasses more when she goes outside but that is the only side effect that I’m really seeing.

I wish I could do something to speed up those mGluR5 drugs....

Having a good summer!

Wed, 30 Jun 2010 20:08:11 -0500

Things have been going great back on the minocycline. Her speech therapist continues to say she can see a big difference. At the end of school they already said we need to meet when school starts to make new goals because she has already met many set back in March! Go Caroline! I am so pleased with what this drug does. This summer I have been sometimes going every other day giving it to her and it seems to be ok. Her breakdowns have almost disappeared again and she follows directions so well. She usually doesn’t like to sit near anyone because of the touch it involves but as you see in the pic above she has begun to tolerate sitting next to her brother which is so sweet. Did I mention I love this medicine:) I hope to keep her on it as long as possible. We will continue to follow up with our pediatrician about the blood levels. We are having a great summer!

Back on the minocycline

Fri, 7 May 2010 07:36:24 -0500

We got Caroline’s blood work back yesterday and her ANA blood levels were normal so our pediatrician said we could start the minocycline again. I gave her a dose last night. We will see how it goes - it should be interesting. What a ride we are on...