Thursday, June 13, 2013

Ed and Kaitlyn's Special Bond

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Today's post is by Ed Samaro, Kaitlyn's Dad

Kaitlyn and I are as close as any father and daughter could be.  She is my special angel.  We love to swim together,  go on long walks or have an adventure; such as our last trip to Boston; we got on trains we had no idea where they were going just to see a new part of the city.  Kaitlyn also loves to be read to and listen to music.  But I think our favorite is eating together!

We share a special bond and could not imagine my life without her!

 A little bit about Kaitlyn:

Today Katie can no longer talk at all (hence the name "My Silent Angel"). She can walk short distances however, we had to get a specialized pediatric wheel chair for her (this was also very expensive) She has rapid hyper motor movements in her arms which we use weights and other physical therapeutic tools for her. There are many other symptoms to include severe gastric problems and stomach pain. She is totally incontinent. She has to ride in a special car seat; she cannot hold her little body for very long. She is small; she weighs 28.6 lbs. (at the time of writing this). She is in a special school which she gets physical and occupational therapy many times a week.

I would love to say she’s getting better, but she’s not. Kim and I remember the last spoken word she said which is ironically "bye bye". We do the best we can to be positive and do everything we can to help her and to help our mission of educating, raising awareness and pushing for a cure.

Katie really loves Pizza, she loves the merry go round at Lego Land and she loves to be sung to. We indulge her in all the things she loves and anything else we can. She is very beautiful, special little girl!

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