Our life - different - but wonderful

Most improved

Thu, 25 Feb 2010 19:51:20 -0600

Caroline’s teacher told me today she gets the most improved award for this year. I then finally told him about the Fragile X diagnosis and about the minocycline. We and they have definitely seen improvements overall and continue to see her speech improving into very well formed sentences. I also really think the antioxidants are helping too - more than I expected. Very exciting. We are heading to the MIND Institute next week for our visit with Dr. Hagerman. We are looking forward to our visit and hope it goes well.

Caroline is 7 tomorrow - Happy Birthday Girl!

Antioxidants

Mon, 15 Feb 2010 19:14:42 -0600

Today Caroline’s occupational therapist told me that she has noticed in the past few weeks that Caroline has been doing some amazing things. She said that at the beginning of the year Caroline had so much difficulty looking at a picture and creating a complete thought and sentence of what was happening in the picture. Now, she said Caroline is coming up with 4 or 5 sentences to describe the picture. They then work on writing some of those sentences down.

I remembered after she said this that a few weeks ago I began giving Caroline Vitamin E and Folic Acid. I heard in a Dr. Hagerman lecture that antioxidants are good for those with Fragile X so I started giving them to her. I now seem to think the antioxidants are helping too. I’m very excited about what I am hearing from those that are working with her. We are seeing the changes at home too.

Who knows exactly what is making the difference but I’m trying to document some of this so we can have some sort of record of what is happening.

They said she couldn’t and she did

Fri, 12 Feb 2010 15:47:54 -0600

I found out that they haven’t been giving Caroline the spelling words and tests this year because her teachers said this was “out of her reach”. They didn’t want to frustrate her and give her something she couldn’t do. Well, I found out and have been pretty upset. They are now sending home the spelling words and we are doing the weekly homework. Upon my request, they gave her a spelling test today. She scored 11/13. Don’t underestimate my girl. I guess she showed them! I am meeting with her teacher next week to discuss some things.

Regarding the minocycline - I think it’s helping - like with the spelling test - Wow! Her Sunday school teacher who didn’t know she is taking any meds made a comment how great she is doing. She said the difference from this past summer (not yet on minocycline) and this school year (on minocycline) is amazing. She actually said Caroline has been” blowing her away this year”. Go Caroline go!

Great Christmas!

Mon, 4 Jan 2010 18:55:34 -0600

Caroline got an American girl that looks just like her with matching PJs. Sooo cute! She was precious - Christmas morning I heard that she had gotten up and when I walked into the living room she was just standing there looking and she said, “Santa brought everything.” She has just played and played. She and her little brother have played together which is fun to watch. Today they were playing hide and seek. Love it!

As far as the minocycline - I’m still giving it to her every day. I see subtle changes now and wonder if the meds are helping. Not sure - she took a big initial jump and now I wonder if the meds will be a cumulative effect. We are planning to go out to Sacramento in March to the MIND institute and I plan to keep her on it until then and see what they say. We will go from there.

Funny thing - she has started calling me by my name, Laurie - not sure why - she has called me Mama all along. She is funny - it’s probably just a phase.

Thanksgiving

Sat, 28 Nov 2009 23:01:26 -0600

We have so much to be thankful for - we have counted our blessings this thanksgiving. We spent time with family (my side). I have the premutation for Fragile X and in one of our table conversations we talked about family carriers. Caroline is the first one to have the full mutation that we know of. My mom is the carrier in our family and it probably came from her mom. My aunt (my mom’s sister) wonders if she is a carrier. She and her husband were not able to have biological children so they adopted my 2 cousins so no chance for pass down there. My aunt had early menopause (39yrs) and wonders. No one knew in our family until Caroline that it was being passed down. I have high blood pressure and migraine problems which, from what I read, is more common with carriers. What a life - who knew? God knew... and he’s taking care of us - Thank God!

Caroline had a great time! She cried when we got home today because she was sad our trip was over. Sweet Caroline - she recovered and went to bed early.

Moving forward

Fri, 13 Nov 2009 10:45:18 -0600

Caroline had a bit of a hard week last week - maybe because of the time change. She had several potty accidents including one at school (the 1st of the year at school). But we seem to be back on track this week. No accidents which is great. We had her parent/teacher conference this week for the 1st nine weeks of school and she is doing ok. In first grade they really push reading and she is hanging ok with that. She is not at the level as most of her regular ed. peers but her teacher said she is still in the average range for this time in 1st grade which is really amazing. I remember her teacher in her preschool program telling me that she will read and the hard thing for Caroline will be the comprehension and the retelling. But - I remember thinking, “will she really read?”. She is beginning to and it’s fun to watch. It is still hard for her and sounding out words she doesn’t know is frustrating for her but we will keep pushing and moving forward. I’m really proud of her.

The Colors of the World are Fading

Sat, 17 Oct 2009 22:00:44 -0500

We put out our flashing pumpkin today in the front yard. Caroline wanted to leave it plugged in but I told her we would have to plug it again when it got dark. Later, I saw her look outside and smile. The sun had gone down behind the trees and she said, “the colors of the world are fading.” I said, “What?” She said it again followed by, “let’s go plug in the pumpkin.” She knew it was getting darker and it was time to plug it in. How poetic and amazing.

Baby Steps

Sun, 11 Oct 2009 21:18:18 -0500

You know it’s just baby steps but each one is a celebration and a joy. Today Will was leaving for a conference for work and he had his bag packed and was putting it in the car. Caroline came and found me and said, “Mama, why is Daddy packing his suitcase?” Such a great question and so well said. To some that kind of thing would be overlooked but to us we celebrate. She is making baby steps and her language is becoming so much better. I told her he was leaving on a trip for work and she said, “maybe we can take a trip in two weeks”. Baby steps....lets keep steppin’...

Future

Tue, 6 Oct 2009 08:35:29 -0500

Today I sit here and wonder about the future. I shouldn’t but I do. What will it bring for Caroline? So many advances in medicine coming (sooner than later, I hope). How will it affect Caroline? Will it be too late for her? She is only 6 yrs. but early intervention is key and she is only getting older. Each year has a story of its own and I’m sure will continue to as we go on. She has come so far but she has so far to go. What a journey....what a future....only God knows....even through all my heartaches I have to trust in Him. What amazing plans he has for us.....

Seeing a difference

Mon, 21 Sep 2009 21:20:03 -0500

Caroline’s teacher said again this week that when Caroline is talking he can understand what she is talking about. He said she is making more sense and really making good sentences and putting thoughts and questions together. One thing about her teacher is that he doesn’t know that she is on minocycline. I haven’t told the school yet about her Fragile X diagnosis. They have her diagnosed with Autism and that gets her all the support that she needs. An extra diagnosis would not change her plan right now so for him to be calling me and expressing these changes is neat. He had Caroline in class last year and he is able to compare before and after. Her speech therapist also said again today that Caroline’s speech has taken a big jump. The speech therapist does know about the Fragile X diagnosis and medicine. It’s exciting that people are noticing a difference.