A Little Something Extra

Thursday, October 18, 2007

Specific prayers

Some of you have asked how to pray for our boy. Thank you! Please pray that
  1. His immune system will be strong (many individuals with DS are more prone to infections)
  2. He will not have a heart defect (40% of children born with DS have a heart defect)
  3. He will not have any hearing loss (40-75%)
  4. He will not have epilepsy (5-10%)
  5. He will not have hypothyroidism (5%)
  6. He will not have opthalmic disorders, i.e. cataracts, glaucoma, etc. (60%)
  7. He will not develop autism (10%)... side note: this is the scariest to me because the others don't affect how he could learn.
  8. He will be high-functioning
  9. He will have good muscle tone

His ability to learn, grow, and communicate are most important to us. So please pray that we would find the right therapists to work with him.

One of these days I'll be able to say, "My son has Down syndrome" without crying. But I'm not there yet. So please pray for us too.


Mommy & Peepers said...

Hi, wow. Though you might not understand now, but congratulations. I have a 13 month old daughter w/ds. We didn't know offically but my mommy intuition had a feeling she'd have ds. I was just talking to a friend yesterday about her pregnancy, and she knew her son had ds through amnio. She said she cried everyday, until birth, but when she saw him, she just feel in love. Our kids have lots of different lvls of functioning and health. Just remember your lil guy is your little baby first and he needs his mommy. Just relax, i know it hard, but he'll be here soon and you'll fall in love. Check out all the pictures on the message boards, our kids are so beautiful. I have to admit at first i had a hard time seeing their beauty, but you will.

God has blessed you!

Mindy said...

I found your blog through the DownSyn forum. I'm thinking good thoughts for your little one.

My 10 month old has Down syndrome. He has never been sick once in his life. He has a minor heart defect which does not affect him in any way (have your doctors recommended a fetal echocardiogram to check his heart yet? check into it.). He's doing exceptionally well and is a joy in our lives.

There are a lot of Down syndrome blogs out there. You can find such great information from other parents, sometimes better than anything you'll receive from doctors.

Wishing you the best.

MacGirl said...

This is my first comment left on anyone's blog. Someone posted your blog on a Down's Syndrome support forum, that I am new to and haven't even posted on!

Anyway, in August I gave birth to a beatiful baby girl who has DS. We had the initial screening done, that indicated 1 in 18 chance of DS, but when we went to do further testing, they noticed the initial test was done too soon and they had my birth date wrong. I was screened again and the result was 1 in 2700 for DS, we figured we were in the clear.

In retrospect I'm glad it worked out that way, for a number of reasons. When we were told, we were surprised but probably not as shocked as we could have been.

However, you knowing now, can only help you prepare and read, and become more familiar with the little life you are creating.

I will pray for strength for you and your family. I will pray for support from those around you. I will pray your little one is as healthy as they can be.

Most of all, congratulations on your pregnancy. I wish you a smooth delivery and wonderful babymoon :)

I'm new to this whole world of DS too, but if you want my email, it's melanie@adcodesigns.com

Anonymous said...

I have a four year old with DS. I'm one of the ones people look at with pity in their eyes when they see me in the mall with my son with special needs. And when they do I just grin because everything they assume about my life is completely incorrect. They see a burden, but I see a happy little boy who brings immeasurable joy to my life and has made me twice the person I used to be. I wish he had been born when I was younger so I could have gotten about the business of really living much earlier.

There's almost no feeling that's out of bounds -- grief, anger, frustration, fear. They need to be worked through, set aside, picked up again, re-examined, and then set aside for good to be replaced by joy, excitement, hope, and pure love. It'll happen, it takes time, but it'll happen. Hang in there!

All my best to you and your family. Prayers for a healthy baby.

Karyn (Tigger) said...

Hi. I have a nearly 2 year old with DS. She had a heart defect and had surgery at 4 1/2 months but is doing great!! She is doing most things at around a typical level except walking which she has nearly mastered. It is a hard thing to come to terms with but I can assure you that there are blessings ahead that you could not possibly conceive. I will pray that your little one is healthy. Please feel free to visit us on http://www.downsyn.com/phpbb2/index.php We would love to hear from you!!!

Karyn (Tigger on Downsyn)

Emily said...

Hi- I also found your blog on Downsyn. I have a 4 month old daughter with DS. We did not know about her DS until the day after she was born and yes we were completely devistated. We also found out 3 weeks later that she has a heart defect that will require surgery in a couple months. It really is a lot to swallow and it will take time for you to adjust to the shock and then grieve the baby you thought you were going to have.

But it does get better! When I look at my girl (Macy) now I just see a beautiful baby who has a smile that truly lights up her whole face and a spirit that already shines.

It sucks when they tell you all the stats for various problems that may occur, but remember it doesn't mean they will happen. When the doc first told us about the DS, he went down the list of "potential problems" so I (in the midst of post-partum hormones) truly picured my baby to be unable to do anything, loose her vision and hearing, get lukemia and not be able to participate in contact sports (that was one thing he said because of the "possible neck instability).

My daughter is very healthy (yes, we have the heart surgery coming up but we will get through it, lots of people do everyday) and she is very strong with excellent muscle tone. She tracks object very well from vision and sound.

The thing I have come to realize is that Macy is Macy. DS is just a small part of who she is, it doesn't define her. She is not destined to be the woman with DS I saw living in a facility anymore than my son will be the prisoner at the State Penn.

It is OK to feel however you feel. I don't know if any of this is much help as I am so new to this journey myself, but I do know that you are hurting probably more than you ever have. The online support is fantastic and there are so many people who have been there that are willing to help. And congratulations on your pregnancy!!!

Emily (mom to Macy)


Laurie said...

I, too, was devestated by the news that my second son had Ds. We did all the noninvasive testing and the perinatologist even said to me, "I would be SHOCKED if this child had Down syndrome." Well, guess what? We were all shocked when Chase arrived with 47 chromosomes.

Chase is almost 6 months now. He's fat, healthy, and loves to smile. He's also the most peaceful baby I have ever met, even though he spent 4 weeks in the NICU for a mild heart problem and Hirschsprung's disease (he had surgery at 3 weeks).

It is not easy. You have to grieve. I still do sometimes. But it does get better. And our kids are beautiful. You will find peace.

I found the online community (blogs, forums) were so immensely helpful. Come visit http://ianandchase.blogspot.com to see our story, and link to many others that may help you.


Me-Shell said...

I am 23 weeks pregnant and my little man has also been diagnosed through amnio to have DS.
I have the same feelings and concerns as you have.
I too stumbled across the forum at downsyn.com and have found so much inspiration from these families and their stories.
Regardless, we have been blessed with miracles. I pray every day for the exact prayers you have written.

God bless you and your familu


mary c said...

I have an almost 4 year old daughter who has DS. She has brought us immeasurable joy to the entire family. She has had none of the health problems associated with DS, started reading on her own at age 2, is toilet trained, and attends a regular nursery school. She has friends and gets invited to birthday parties. We did not know before she was born that our little one would have DS and were initially heartbroken. By time, and this delightful child have healed all wounds and we are absolutely thrilled we have her in our lives. If you want to read her story, go to www.annasamigos.com. Good luck with the rest of your pregnancy, and best wishes for an easy and quick birth.

Alicia Llanas said...

Hola! Im a 23 hyear old mexican mom to a 2 year old boy with down syndrome
im christian and i love your posts, God allow us to ask and pray for whatever is in our heart, and he says that our desires will be answered
we didn't knew before Elias (because of Elijah the profet) was born that he will have down syndrome, but we prayed a lot during the pregnancy for his health etc.... let me tell you that Elias yes he has down syndrome, but his heart and health is most than perfect. and lots of people is always praying for him (my father in law is pastor)
this has been an excitment journey, i can remember worring about autism too... and i still sometimes worry for X number of things then i remember the promise that God gave us the day he was born: for the eyes of people he will not be able to do lots of stuff, but with me in his and your heart everything will be possible

and yes, i believe it! and share this... remember that for what people could be impossible (healing, or removing that extra chromosome) for God is possible (i have hear couple stories about two persons that were born with DS and now they dont, and two stories of kids that were going to have heart surgery and few hous before there hearts were fine) just pray and keep the faith! its all about having faith.

SunflowerMom said...

Another DownSyn memeber, popping in to say congradulations on you baby boy! I have a 3 yr old son with Ds and found out after his birth. He is a delight! I will pray for your son's safe arrival and happiness for you and your family. You are welcome to visit my blog and see just how active a 3 yr old with Ds is!

Deborah (mom2Sean)

amy flege said...

first of all I want to congratulate you on the upcoming birth of you baby boy !! how exciting! I have a 20 month old baby girl with down syndrome. We did NOT know she had Ds until after she was born. We knew instantly when we saw her but I never cried or grieved for what some think is the perfect baby. She was perfect no matter what. We were lucky and she has no health issues. She has been the healthiest of all three of my kids. I look at Down syndrome as not a bad thing but a blessing. Please just remember to breath and enjoy him!! He will bring so much joy to your life!!!
stop by my blog sometime!!
hugs to you!!

Jennifer said...

Dear Jennie,
Your blog was referenced on downsyn.com (which I would highly recommend that you take a look at if you have not done so already). I read your blog and we have so many similarities. Beyond sharing the same name (though I go by Jen) I too have a baby with DS. She was diagnosed in utero with amnio after a run of the mill ultrasound showed a number of the soft markers and a follow up level 2 ultrasound indicated this as well. Our baby also was diagnosed with duadenal atresia at this time. Fast forward a few months and she was born in the back of an ambulance at 37 weeks and 4 days. We had gone in twice to the hospital but were sent home as labor slowed down. When she decided to come, she did so in a hurry and we were met by the EMTs near Tenney Park in Madison (see another similarity-- WI). I hear your anger in your blog and have thought many MANY of the same things. MANY! I won't give you any one liners to make you feel better. I'll just tell you that my daughter is now 3 months old, and she's beautiful. She came through her surgery to correct the duodenal atresia just hours after her birth and it's completely healed. She's on 2 meds and will be for at least 6 months, but they're no big deal. She smiles at me and I die. I still have lots of crappy thoughts and moments every day, but it has gotten better since we first got the "bad news" (it's how we were told as well). I am completely in love with her. The best thing I've done was to reach out to other parents of children with DS and downsyn has been great. I just wanted to tell you that there are lots of people, people you have never met and might not have met in any other way that are here to support you and let you be angry and cry when you need to cry. It does suck... but, it will get better.
Best wishes,
ChoseSophie (my downsyn name)
Jen Schrad

Anja Huebel said...

Try not to worry what other health problems will be thrown at you besides the DS. You WILL be able to cope, simply because it will be your child. For example, if your littlun has a heart defect, it can most likely be corrected with surgery. The first couple years may be tough because of various health and growth issues, but I promise you, you will get tons of joy and strength from your child too.
I hoped that my son would be high functioning. He is currently very backward even for DS, and despite not having autism or fits (he has extremely low tone and Hirschsprung's disease). But I love him to bits! Christopher is two and not yet sitting, I have to change his diaper 10 to 12 times a day. But it's all OK. I'm used to it now.

Best wishes from Germany

max said...

Hi Jennie
I'am Maxine another mom from www.downsyn.com
Congratulations on your pregnancy.
I have a 3 year old son Dominic with DS. He's the sun, moon and stars to me, along with his 13 year old brother.
Its difficult to put into words the range of emotions and fears you get with the DS dark unknown, and I'am sure that's where you are right now.
The good news is, it really does get better and if you check out the message boards and our kids photos, you'll see there is a great life and a great future to be had, with a DS diagnosis. That's all it is really, a set of possible symptoms.
It will never describe the character of the individual beautiful person my son is, or child your baby will become.
The world is and can be a much brighter place, when you share your thoughts and feelings with people who understand and have been there too.
Please come join us, bring your family and friends.

The Tryon Family said...

Hi. I just had my 2nd child with Down Syndrome on August 10th. I will pray for you and your family for the health of your sweet baby and for comfort and inspiration for your family. I wanted to share a post I recently posted on a Down Syndrome support site: I am sitting here next to my sweet sleeping Amelia and feeling truly happy. I never really had a hard time adjusting when we found out about Mary. The Dr came in after her birth and told us that he suspected DS. My reaction was, "Okay." I was not sad or mad, but overwhelmed. I was overwhelmed that I had to live up to being the mother of such a special spirit. I am the type of person that when I am faced with a problem I put everything into researching and finding a solution. That is exactly what I did with Mary. I found out everything I could about DS and researched every therapy, nutritional supp., and program that was out there that would help my sweet girl reach her dreams. I had fears for the future. When would she walk? How delayed would she be? Would she have health problems? I wish I knew then what I know now. Unlike most of you, I get the wonderful opportunity to have a new baby with DS and know what I am getting into. I find myself completely in love with Amelia with no fears of the future. It is such an amazing feeling. I realize that she will do everything, just as Mary has done. I know that she will bring a happiness into my life and my home that could not be duplicated. I know that we will have to work harder for things, but that when we accomplish them it will be that much sweeter. I have been able to enjoy my baby as my baby and not something that is going to drastically change my life. This is my life and I love it. I wouldn't have it any other way. I know as a new mom of a child with DS you hear all the encouraging words from mother's who have already been there, but it is so different to actually have experienced it and know that you can really believe and trust that advice. I wish I could give all the new mothers (and fathers) this feeling of comfort, but unfortunately I think it can only come with time. I hope that if any of you out there are scared and unsure you will believe me when I say that you have no idea the love and blessings you will receive from your child. I am so thankful for my girls. I would not change them for the world. Sorry to ramble on. I just wanted to share this peace I have and pray that it might give you new parents out there a sense of hope.... Good luck with your pregnancy and your baby.

Kelly said...

Hi my name is KElly and I am a mom of 4 will be 5 come march. My third child has down syndrome. Her name is Alexis and she is two yrs old and the light of our lives. I have changed so much since Alexis. I know it is hard to believe but you will be able to talk about DS and hold your head up high and smile. Your baby boy wont be any different then anyother baby so relax and enjoy him! That is the best advise I can give you. I heard about you on the downsyn website and I so recommend you to look and even one day when your ready join us. Congrats on your baby boy! He is a blessing you just wait and see!