My Little Light Bringer

Today the is the Texan’s first game in the playoffs, so you know my husband already has his jersery on. 😉

I spent all of yesterday trying to call people back. Since finding out our son’s diagnosis, my phone and my facebook have been blowing up! Which is understandable! I mainly called family back so I could start to answer questions or at least reassure them that I was ok.
Many didn’t even know what our decision would be- if we would chose to terminate or not. Which was surprising, but everyone was supportive no matter what we decided.
Then is was- “we want more information”. Again, I am just blown away by the support my family is offering.
So I began researching.

Did you know that our precious boy will start therapy only a week after he is born? Or that he gets free health insurance and SS Benefits? I didn’t! Texas has some awesome programs that will help our little one and for that I am so greatful.

I am feeling better, mainly because I have information. I have contacts and I know what to do when he gets here. I also got in touch with a support group and another person who has a child with DS. And of course I have already added some of my favorite designer gene blogs to my site. So right now….I think that is all I can do.

I haven’t come up with more questions yet, so I think I will work on that today.
And a name!! This sweet boy needs a name!!

I was feeling to productive yesterday that I also began looking at embryo adoption and sperm donors. Barry and I always felt that 2 children would be what we wanted. 1 boy and 1 girl. But we both approached each other last night about changing that number. Our son will need a companion. Another buddy to rough-and-tumble with and protect him.
If we did embryo adoption, we could do PGD and know the gender and chromosomal make-up of that child before even getting him/her.
If we did IUI we would look for good sperm donors and try like that for a few cycles (although that adds up quickly).
Either way, we have some questions about that too.
I told you I was crazy, but both of these processes take time to arrange so I figured we would start early. When I am cleared for another pregnancy, we would already have everything in order. And who knows how many cycles it will take?
Gosh, building this special family is going to be fun!

Embryo Adoption Questions:
-How soon can we begin?
-Cost?
-Screening offered? PGD? Gender Selection?
-Medications/Protocol?

IUI/Sperm Donor Questions:
-How soon can we begin?
-Cost?
-Medications/Protocol?
-Screening/Choosing Donor?
-Quality of my eggs based on last cycle? Viable option?

DS Questions for DR. C:
-What kind of monitoring will we be doing throughout the remainder of this pregnancy?
-Do I still need to see the MFM doctor for another heart checkup?
-Do I need to register at the hospital?
-What services does the hospital offer for my child?
-Will I be able to hold him after delivery?
-Based on what you are seeing, what can you tell me?

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18 Replies to “My Little Light Bringer”

    1. Thank you! I appreciate all the other families out there blogging about their journey. It’s a bit scary and intimidating, but I am finding it easier the more I see other families who also have been blessed with DS children. Your little miss is absolutely adorable, by the way!!! She just lit me up with possibility!

  1. Thank you so much for leaving a comment on my blog! Congratulations on your son; I’m sure you can’t wait to meet him! It’s wonderful that you seem to already have so much support from family and friends – that definitely helps a lot when dealing with a new diagnosis (which can be so overwhelming in and of itself!) And you’re already doing research, finding out about support groups, meeting with someone who has a child w/Ds … sounds like you’re on the ball!

    I hope you don’t mind if I share a few other resources with you. There is a free downloadable e-book that is for parents who have received a prenatal diagnosis and are continuing with their pregnancy: http://downsyndromepregnancy.org/the-pregnancy-book/ There is a suggested donation to download the book, but it is not required to donate before downloading, it is a free resource.

    A few years ago I was honored to be able to participate in a collection of stories for the book: Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives. http://giftsds.segullah.org/

    And a few months ago I wrote this post titled Having A Child With Down Syndrome: What Nobody Tells You. http://www.parents.com/blogs/to-the-max/2011/10/06/uncategorized/having-a-child-with-down-syndrome-what-nobody-tells-you/#comments

    I’d love to follow along on your journey and welcome your new son to the world! If you have any questions, or anything, please feel free to ask me.

    1. Thank you thank you thank you!! I really appreciate these resources and your willingness to help!
      Yes, it is a bit overwhelming, but you are right- my family and friends are amazing and with theirs and God’s help we can do this!!
      I will definitely begin to look into this- and of course you know I am already following your family 🙂

  2. Hi Ashley,
    Thank you for your comment, so glad you found us;) I went through what you are going through almost to the day, 3 years ago. Thinking about it gives me chills because I remember exactly how I felt, all the emotions, the fear, the questions. All the unknowns. Finding other blogs was what really helped me at first so it’s so good that you are reaching out because you need to know you are not alone, even though it can feel very lonely at times. Whatever you are feeling-good or bad is all normal and please don’t hesitate to contact me with any questions! This family of DS bloggers is AWESOME. I wish you a very healthy and happy pregnancy and can’t wait to “meet” your little boy when he arrives! Oh if you only knew how much joy he will bring you. Just take my word for it;)

    Adrienne

    1. Almost to the day? That’s incredible! I was just writing back to someone else saying how amazing it is that God has already brought so many new friends to my blog! …but perhaps your visit is the most interesting, since it was not only so recently but followed our timeline.
      Yes, I agree, everyone has been awesome already and I feel as if I am certainly part of a community already!
      Thank you for your response and your wilingness to answer my questions.
      Hoping to ease into this as we wait for him to get here. 🙂

  3. Hi!!! Welcome to the world of Ds : ) You are in for an incredible journey! We would have missed out on so much in life without our sweet Ella!! I am so impressed by your upbeat attitude so early on, I was devistated when Ella was born and we found out she has Ds. I so badly wish that I had had your attitude and didn’t waste all those tears!! I do want to say, I don’t know if it’s different in different areas of Texas, but Ella was born in Wichita Falls and we did not get SSI or supplemental insurance. Everything was based on our income, and we didn’t make very much at all at the time, and we did not qualify for a single thing. Likewise we have not here in Washington either. Just letting you know! We have always had private insurance and have done just fine : ) Congratulations on your new little guy!!

    1. Thank you, Kacey!
      That’s good to know about SSI and insurance- the lady we spoke to for our county didn’t mention anything about it being based on your income. She just blurted it out as if we were already eligible. We didn’t expect it and we have private insurance so either way, we will be just fine 🙂
      You are sweet to comment on my attitude! I don’t feel that positive or strong. 😛 But I am trying!!

  4. congratulations on your baby boy! you’ll have plenty of emotions on this trip but wow, are they all worth it. let yourself feel them all and it’s good you have this blog to put them all down. you’ll look back at these post on his first birthday and you won’t recognize this person. 🙂 please stop by my blog when you get a chance…you also need to check out http://aimeesbowlofcherries.blogspot.com and http://pudgeandzippy.blogspot.com … two of my favorites.

  5. Congratulations on your bundle, and welcome to The Club! While it’s not a membership you really ever wanted, I’m sure that you’ll grow to love it just as much as the rest of us. We had a prenatal diagnosis as well- knowing from the get-go sure makes for an eventful pregnancy, but I wouldn’t give up having known for anything! Hang in there; once the shock wears off, you’ll start to see the sun again, I promise! There could be challenges or health issues (or not!), but they’ll make everything he does that much more monumental. Just remember that nothing can dictate what your kiddo will be capable of- his strengths will astound you.

    Let me know if you have any questions; the prenatal part adds a whole ‘nother layer to the journey. If you ever need to chat, lemme know! 🙂

    Happy Baby to you!!!

    1. Thank you Aimee! I think right now it’s good days and bad days….and it’s only been a few days since we found out! lol But I can say that I would rather know before than find out when he gets here and feel even more overwhelmed- I’m a planner…to the extreme. 🙂

      Do you have any tips for educating family? While they are all excited to meet our son, I can see the fear and anxiety in their eyes…hey are being wonderfully supportive but they are just as fearful as we are about the unknown.

      1. This is a great question! I’d expose them (and myself!) to as many little people as you can. Whether it be via blogs (“hey, look how cute this little guy is!”) or in person (see if your local DSA has any group outtings- we have an Easter Egg Hunt every year- you could go and “stalk”, lol), I’d want them to see what BABIES and little KIDS look like. Not adults. Not teenagers. But the babies- because when you see them, you realize that they’re just that- BABIES.

        And while your family will build off of your reactions and your feelings (if you’re excited and positive, they will be, too) it’s important that you share your hesitations and fears, too. For several reasons- primarily, it’s good for YOU and YOU need that support. But second, they may be having the same thoughts. It’s kind of like they say in school- if you have a question, chances are someone else does, too. If you can talk through it, it may help answer some of their questions at the same time.

      2. That’s great advice, thank you! I have already been showing off my blog. It’s weird because my blog was mainly infertility and only strangers read it! Now my family has it and I’ve been sharing everything.
        And the blogs of others help so much- I’ve already shown off so many of your children 😉 So that helps. But you are right, my family (my mom especially) is worried about many of the same things I am concerned with. Hoping my meeting with my doctor will help.

  6. Well, first- Congratulations! Having a child is the single most life changing event let alone one with a little something extra! Best adivice I can give you on your journey is 1. to work through your emotions…there is no wrong way to be feeling, and 2. COMMUNICATE with your hubby you both will need to get a lot off your chests through this, and 3. Take one day at a time. Best of luck to you and your family, it’s an incredible club you’re in!

  7. I am hoping perhaps you will think more about trying an IVF cycle WITH YOUR OWN EMBRYOS and have the embryos tested (CGH looks at every single one of the chromosomes, PGS/PGD will look at roughly half of the chromosomes-so you could potentially transfer something that isn’t perfect. Make sure to talk with your clinic about this as the last thing you want is to go through testing only to find out that there is still something wrong-but by testing your own embryos and only trasnferring what you know is perfect, you will be able to complete the family you guys want with your own biological children.

    Chromosome issues are flukes, they happen often and to women of all ages-just because you had one doesn’t mean ALL of your eggs are bad!
    If you are already considering PGS on donor eggs, you might as well save the money it will cost you to purchase donor eggs, and test your own!! I bet there will be no less than 1 (most likely more!!) that turn out to be perfect in a fresh IVF cycle. If on the crazy off chance every last one of your embryos turns out abnormal-then you know it is time to look at other options-until then all I am saying is give your ovaries a chance to fill what your heart wants!

    1. I agree, and that would be ideal, but we have felt very much led to adopt for a long time. It’s something we just want to look into and see what happens from there. If we do embryo adoption we would certainly do PGD or CGH (the only issue is that our combined egg and sperm had to be a 3 day transfer and nothing survived past that, so PGD was not an option for us).

      We may end up with IUI and sperm donor, but it will just depend on what a genetic counselor says.
      At this stage, we just want some more info on the process and then go from there. 🙂

  8. There are tons of teens and adults with DS doing astounding things. It may not be the time but don’t be worried about sharing and meeting any age group, you will be impressed.

    Not to say aspects of their journey won’t be tough to see or understand or relate to right now but overall, you will be thrilled I bet.

    On Facebook once, I ran across a ten year old playing violin and speaking several languages in the Midwest if I’m Remembering correctly. No limits to abilities, we all have our own unique traits.

    Info is great to find out now and research but I’m praying for a healthy little son who will leave you with plenty of time and energy to research these options later too.

    No rush and you are certainly an excellent and informed patient!! Great skills that come in handy I’m sure. I’m wondering what your background and other skills are beyond research and CONCISELY expressing a world of emotions in a few paragraphs.

    You might want to add the name of the blood test to your cloud or blog search words. It likely will generate some additional parents facing the same tricky waters and situations you are now navigating.

    Hugs and peace, may your questions be found and answered. Try downsyndromepregnancy.com too– I know there is a family and friends booklet the group is working on so the discussion threads might have help and ideas for resources in that area. Hmmm I should check that out myself.

    1. Pam,
      Thank you! 🙂
      I will definitely go back and add that to my tag cloud- good idea! I try to keep up with it, but it’s not easy sometimes. lol

      Truly it’s the developmental milestones and growing up to be successful that I am concerned with.

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