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New diagnosis in our family

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    New diagnosis in our family

    Hello! We have had our twins, fraternal boys born on August 26. They came a month early and spent a week in the NICU but are home now, settling in well and being constantly loved on by all their siblings.

    One of our little guys was diagnosed at birth with Down syndrome. He has some heart issues but is not expected to need surgery. He is very healthy right now!

    I know there are moms here with children with DS, and I would love to hear from you about the first year. We are just focused on teaching him (and his brother!) to breastfeed now and relishing this sweet baby time, but I know there are things that need to be addressed too.

    It will be another month or longer until we even hear from the state intervention program, much less have the in-home evaluation from them. The PT in the NICU mentioned him needing to start therapy soon, but I’d like to wait to start taking him to offices for appointments until he is older with more immunity and nursing well. So any things we can do now at home to help him strengthen and organize his movement?

    Any book recommendations? I would love to read something about the day to day life, esp about the first couple years. And any other wisdom you can share as well.

    Thank you!!
    Catherine

    2021-22
    DS18, 12th
    DS15, 9th
    DS & DD13, 8th
    DS9, 3rd
    DD6, 1st
    DS3
    DS & DS born August 26!

    #2
    Catherine, God bless your family.

    You and I communicated privately after the birth, but I just wanted to share some books based on your question here.

    Do you know about Woodbine House?

    Consider these selections, which I heartily recommend:

    - Early Communication Skills for Down Syndrome: A Guide for Parents and Professionals

    - Gross-Motor Skills for Children with Down Syndrome

    Add the Fine-Motor counterpart to the above when ready.


    I have not read this book, but it might address your specific request:

    - Babies with Down Syndrome: A New Parent's Guide

    At least two of these happen to be on sale from the publisher.


    Catherine, you are a reader, researcher, dedicated mother, and a person of faith. I know you will love and serve your little one expertly with the help of God.


    We look forward to supporting you any way we can.

    Comment


      #3
      Thank you, Cheryl! I have seen some books from Woodbine House. I will check these out.

      Amazingly, I got a call from the state program this morning, after they had told me it would be six weeks until they could get to us. So we have an in-home evaluation scheduled for next week!
      Catherine

      2021-22
      DS18, 12th
      DS15, 9th
      DS & DD13, 8th
      DS9, 3rd
      DD6, 1st
      DS3
      DS & DS born August 26!

      Comment


        #4
        That is wonderful news!

        Also, if you haven't seen 47 Strings: Tessa's Special Code, you might want to take a look on Amazon. One summer I read this aloud to an entire faculty as everyone prepared to welcome two young students with Down syndrome. Nicely written and gently illustrated, this could be a helpful book for your baby's siblings of all ages.

        Keep us posted --

        Comment


          #5
          Someone just brought that book to us! It is so good! After my younger children had read it several times, I heard my 6 year old daughter singing a song to our baby without DS about how wonderful it will be for him to have a big brother with Down syndrome (because it is our first twin who has it). ❤️
          Catherine

          2021-22
          DS18, 12th
          DS15, 9th
          DS & DD13, 8th
          DS9, 3rd
          DD6, 1st
          DS3
          DS & DS born August 26!

          Comment


            #6
            Welcome to your sweet twins! Congratulations on getting this far. One of our friends, who now homeschools with MP, just welcomed twins as children #3 and 4. It's been amazing to see the Lord's grace and mercy in her life as she tackles that difficult task. I pray the Lord continues to grant you the wisdom, grace, and insight to parent your newest ones in the way that best meets their needs. It sounds like you have a lot of motivated helpers!
            Mama to 2

            Spring start MP1
            Summer start 5A

            Completed MPK, MP1 Math & Enrichment, MP2, 3A, 4A, SC B, SC C,
            SC1 (Phonics/Math), SC2's Writing Book 1

            Comment


              #7
              Originally posted by enbateau View Post
              Welcome to your sweet twins! Congratulations on getting this far. One of our friends, who now homeschools with MP, just welcomed twins as children #3 and 4. It's been amazing to see the Lord's grace and mercy in her life as she tackles that difficult task. I pray the Lord continues to grant you the wisdom, grace, and insight to parent your newest ones in the way that best meets their needs. It sounds like you have a lot of motivated helpers!
              Thank you so much!
              Catherine

              2021-22
              DS18, 12th
              DS15, 9th
              DS & DD13, 8th
              DS9, 3rd
              DD6, 1st
              DS3
              DS & DS born August 26!

              Comment

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