Wednesday, 14 May 2008

Knoah’s ARC update


Andrea, age 4, Undiagnoised Dwarfism

Mandy, mom to Andrea sent me an email sharing Andrea’s happenings.

I wanted to share them here:

Andrea is getting big. She was a micro preemie born at 27 weeks.
She is 4 now. She goes to an Early Intervention Preschool, it is 3 half days a week. She will be doing the same thing next year. She isn’t quite ready to go to K4. Not because of her dwarfism . It is because of her maturity level. Her attention span isn’t quite where it should be.

Her health is good. Just the minor colds that go with the weather. She is still not measuring on the growth chart. Because she is undiagnosed typeof dwarfism they don’t chart her on the achon chart. She is measured on the regular growth chart.

We have an appointment to see Dr. Bober and Dr. Mackenzie in September. We are hoping to get a diagnosis then.

Andrea loves to color, being read to, and eating. Pizza is her favorite food and her favorite place to eat is Pizza Hut!.

Isn’t she a doll! Actually funny story, Mandy and I crossed paths several years ago. My husband and her husband worked together. We met up again after we had Knoah! They have sinced moved out of state, but we keep in touch often through email. Funny that someone we knew before we became POLP would have such close ties to each other!!


4 Responses to “Knoah’s ARC update”

  1. Sonya Gawthrop Says:

    Tonya,
    have they seen a genetic Dr. to test and be clinicly diagnosed becasuse a genetics dr might be a good place for this family to get some answers now while waiting, to see Dr. Bober and Dr. Mackenzie. Most Peds don’t know the baics about Dwarfism infact lots of Us Parents end up Diagnoing our children before doctors too, I did so we broght it up to have him seen by a genetic Dr.
    Dr. Innis was very well intune wih Jaden and Jon he isthrough University Of michigan, and they see patients outside of state if they want his number call me ill give it to you to pass along.

  2. Mandy and Bill Says:

    I think that we can answer your question.
    We have been to 2 different geneticist. 1 while we were living in Michigan and the other when we moved to PA. Andrea had a genetic testing when she was younger. Andrea does not have the gene for hypo or achon. She also had a skeleton survey done. At the time she was about 2 years old. Her tests showed she had dwarfisim but could not pin point a specific kind. They told us to wait until she was 4 and then we will redo all the MRI’s and x-rays.
    Most kids with an undiagnosed type of dwarfism are diagnosed around the age of 4.
    I hope that answers your questions.If you have more don’t be afraid to ask.

  3. Kim Says:

    Mandy-Such a cute new picture of Andrea. She is getting big! Time is flying. Good luck with the appointments. Thinking of you guys.
    -Kim & Preston

  4. Mandy and Bill Says:

    Well I did it. I have jumped on the Blog wagon. I just started it today. So there is not much there. I hope that you enjoy our family.

    http://momofpeanutandbibbers.blogspot.com/

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