Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Tuesday, June 22, 2010

Mairead updates

I promise to share some twin updates and pictures soon, but I just had to share this because Mairead is in the other room right now having her developmental therapy session, and she is doing some AWESOME stuff today! Abstract concepts are really hard for her, as is answering direct questions. Mary, the therapist, asked Mairead, "Does the airplane go in the sky or on the ground." The wheels started turning and Mairead took a few moments and blurted out, "in the sky!" This seems simple to some, but for her, this is great! She is learning to process things much more easily, which is such great news.

The other day, I took her out to run some errands and on the way home, we drove by some waterfalls. She said, "Mom, I see waterfall." Again, huge. Then, she said, "It's beautiful." I literally started to cry because of that simple statement. Because, it's not so simple for her, and to know that she is enjoying and appreciating the beautiful world around her is just about the best feeling I could have.

She is also really stepping up her coloring and drawing skills. She did this one today with Mary. When she colored the little blanket (in red) on the elephant's back, Mary said that was 'kindergarten level' coloring. Maybe we have an artist on our hands...

And, this is the face she drew completely on her own yesterday. She says each part when she draws, "circle, eyes, nose, mouth, ears, and hair." So cute!

In medical news, we have a date for the MRI. I spoke with the neurologist at 3:30pm one day last week, and radiology called the next morning at 8:30 to get things going. I was impressed! I answered some questions and they told me that a nurse would call within 48 hours. She called an hour later, asked more in depth questions, and told me that scheduling would call in 2-3 days. They called 5 hours after that. About time things started moving quickly!!!

Anyway, it will be at 7:15 am (ugh) on Jully 7. That is actually not bad... I was expecting to wait longer. She can have it done at a sattelite location so we don't have to trek into Boston, which is nice.

I am already freaking out about it. About the actual MRI, the sedation, etc, about the results, everything. There really is no good result. Either they see something wrong in her brain (good because it explains things and may help with preschool, but bad because, hello, something is wrong with her brain) or they don't see anything (good because her brain is ok, bad because we are back to sqaure 1 with what is wrong). Please keep us in your thoughts on that day. I hate to have her sedated, but there is no other way to do it. And, at least she won't be scared while having the MRI- those things are scary!

I have to say again how much I love Mairead's team from Early Intervention. All of ther therapists were here yesterday after coming to the house for a meeting about where to go from here. They are awesome- this is not a typical or required step when a child is about to turn 3, but they were so disappointed with the IEP results and so interested in what her upcoming MRI will say, and, of course, so concerned about our little girl that they thought we should all meet to figure out our next steps. THEY suggested the meeting because they want so badly to do something to help us.

They are each going to write summaries that illustrate their concerns about M and their feelings about why she needs preschool, and these summaries will go to the neurologist (who has offered to try to help with the preschool issue) and with me to mediation when I appeal her IEP.

They offered suggestions for how to best appeal the IEP, and brought materials and ideas for private therapies, learning centers, preschools, speech pathologists, etc, so that we have resources after she is discharged from EI.

They are awesome. They truly care about her and they make me feel so much better becaue they can see what I see. They can see that she WILL test well but that all of the gray areas are where she needs help. They can see that she is bright, but that she still needs so much help. They see all of her strengths and how great she is, but they also see why she is deserving of services and how much she could benefit from them.

I wish she could go to Early Intervention forever. Seriously. I love them. But, the law says that children can only go until their third birthday. I am going to be SO sad on her last day of school and at her last sessions with each therapist. They have done so much to help us and she loves them. We are truly going to miss having them in our lives. I am trying to be positive and focus on the fact that we have the month of August 'off,' with no therapies, etc. We have a couple of family vacations planned for that month, so it will be nice to just have fun with our kids.


katiec said...

So glad to hear about her progress! That is so sweet about the waterfall (perhaps you were on the VFW?) And, I'd like to point out that some of her abstract statements started when she mentioned that Lily is "cute"!

Caitlin, Al, and Brielle said...

Great news about Mairead's progress! I will be thinking of you guys on July 7th. I am so happy that you had such a great experience with early intervention. It must be so comforting to know that they care about Mairead as much as you do!!

Terry Family said...

I'm glad to hear the process of scheduling the MRI went smoothly. I also know exactly how you feel about losing M's therapists. Nathan too loves his A-Team, and they have so much fun together. I'll be thinking about you next week. Did you ever find a developmental pediatrician?