Update on TJ.... More news

[martikadragoon]

Ok, well as you know my son was diagnosed via amnio of having Down Syndrome. I just found out a month ago and was waiting to find out if he also had my skin disorder called EHK. he had a %50 chance..

Guess what? He also has EHK. 1 little boy with two rare/hi odd's disorders. EHK is 1/300,000ppl that it affects. D/S was a 1/1000 chance. This saturday we go in to find out if he has a heart defect. which is a %40

I fully expect he will have some form of defect that is mild. But because of the EHK diagnoses, I now have to have a C-Section 1 1/2 hr's away. meaning my next child if I have a normal baby will be a VBAC. (I fully intend on trying)

I'm not too down in the dumps about this because even tho I've had 1mo to get used to the D/S diagnoses, I've had my whole life to expect a baby with EHK.. and to tell the truth, I always knew my first would have it. even if I can't tell you how I knew.

[martikadragoon]

Kimmy~ Thanks for the info on the book,

Stresshead~ Thank you for the kind words!

Today I made a ton of calls and Now have a Pediatric Dermatologist, as well as a new OBGYN to see when I choose to. Also, one of the doctors there HAS delivered a baby with EHK. They will be consulting together as they do 2X a mo.

I'm very nervous about Saturday... it turns out I'll be going by myself. :( I'm not too happy about that. my mom can't go because she's picking up a friend (who has EHK) from the airport. And carlos is working 10-7 that day.. My apptment is at 11:15... UGH

Oh Well...

[StressHead]

You are inspirational and your baby is very lucky to have a mummy who will love him so much.

[kimmy27468]

If you haven't already, you should read the book "Expecting Adam" by Martha Beck. It is a wonderful book about a family having a child with Down Syndrome and all of the things they learned from him. My uncle passed away a few years ago and he had down syndrome and he was the light of our family. I will always remember my grandfathers story about the day Stephen was born and how the doctor assumed they would be placing him in a home, and my grandfather said "He is a gift from God and will be staying with us". It is so refreshing to see someone embrace such a blessing with open arms, which is unfortunately not always the case.

[martikadragoon]

THANKS hana!

[hanacabana]

It sounds like you are already becoming a very loving beautiful mother! Thats great that you can feel him moving a lot more now too. I have been able to feel my little one for about a month and a bit now and i dont believe it will EVER grow old.
Also as someone due at the end of August (31st) too may i officially welcome you to the August 2008 babies community!!
Sending you love and strength!
xox

[martikadragoon]

Joy~ I agree about having the "why me" thoughts. I could never blame god for this, because I know somewhere (even if it seems twisted to me) that he has a reason.

Maybe it'll help bring my family together.. I know the other day when I felt him moving my brother was here and asked what was wrong.. I told him "I'm concentrating because he moved" and he went to put his hand on my stomach (VERY out of character for my brother any of em) but I had to tell him that he wouldn't be able to feel it yet because I couldn't hardly.

Good news tho, for like 20+min. I felt him headbutting/kicking/punching me or something like that. Laying on either side or on my back I felt it. he*l even sitting up. it was so cool feeling and reassuring!

[JoyRenee]

You sound like you're dealing very well with this. I'm sure you have days where you think, "Why me?" and if you ever do think that it's because GOD KNOWS YOU'RE STRONG ENOUGH! He's equipped you to take care of a VERY special child. I cannot wait to see TJ after he is born. I am not a crier but I have tears in my eyes thinking about you and him. *HUGS*

[martikadragoon]

JustMe0925~ Thank you so much.. its alot to get used to right now. I have no doubt I can, just wonder how I will when the time comes for his birth.

AFM (AS FOR ME)~ DH now knows. I just told him over the phone.... he's disheartened right now. And I already made it CRYSTAL CLEAR I want more babies after this!

[JustMe0925]

I just want to say, "You are one very strong woman."  I know that if I was in your shoes I would be the same way.  I want to wish you the best of luck with everything!!!!

[martikadragoon]

To those who want to know. my skin problem EHK is rare 1/300,000 ppl have it and to pass it on you must be born with it or have a baby with a spontaneous mutation (think down syndrome or Xmen... hence the powers)

I had a %50 of passing it on to him as I do with each child in the future. Our body's are have a mutation of a gene on the 10th chromosome (K10gene) that causes our body to produce skin cells 300X faster than normal, and it doesnt come off smoothly so I always look like I have a peeling sunburn all over my body.

Babies born with this have a %25 mortality rate because of infection due to ripped skin at birth. They're skin is VERY thin and fragile, to the point of tearing when touched at least for a couple weeks after birth.

EHK is part of a family of disorders under the family name Ichthyosis.

Psoriasis and Excema are both under this, but distantly related.

Hope this info helps! BTW... my due date is gonna be moved up to the end of august since they'll deliver me around 38 weeks.. (WAAAAAAAAAAA)
lol

[motherofan18month]

im glad you aren't stressing over this....i know it can be hard to handle to some but it seems as though you are doing great...i wish you the best throughout the rest of your pregnancy and with the obsticles of birth and after birth....i know you will do great and be a great mom....best wishes and big hugs! Happy Early Momma's Day!

[JMcGee]

I have to say that you are on amazing mother. Your son is so lucky to have you there for him. God deff. gave him a wonderful mother that cares deeply about him. I wish you the best of luck before, during and after your delivery. I will deff. be thinking about you and praying for you at the sweet baby boy of yours. Please post after delivery, Im sure everyone would like to hear how beautiful your son is, and how you are doing. God Bless all of you. :)

[durhamjk1]

You are very strong!  I applaud you!  One of my very best friends is 24 years old and she had a child at 19 that was diagnosed with DS.  We love her little one to death and she truly is a blessing, which I am sure you will and probabably already know.  I will keep you in my thoughts and prayers.  

[bioclock1]

all the women have said what i would/could say so i'll just let you know that your family is continously in my prayers and i know everything will be okay. Good for you for being so strong girl!!!

[pmperez]

With my little cousin that was born with down's almost a year ago she came home with a heart monitor and she now has I think its called occupational therapy they come to the house and work on her she's a little behind I think we've talked on this before..but anyways I know every case isnt the same.....I was also curious as to what your skin condition was Im not familiar with it....Good Luck and take it 1 day at a time

[adawning4]

Girl I have to give it to you! You are a very strong woman and to be so young..... I couldnt imagine being in your shoes! I am also unfamiliar with the skin condition. I hope that all works out for the best! Obviously God Knew what he was doing! I am very confident that you will be a good, caring, loving mother to TJ.... God Bless You!

[krissyy]

as i have said before, you are one strong 21 year old woman!  your little boy is lucky to have you.  i'm unfamiliar with this skin disorder you are talking about...is it discoloration or extreme sensitivity???

[martikadragoon]

You guys(girls lol) are so reassuring. I appreciate the uplifting comments. I'm not even stressing anymore on the D/S... actually the thing I'm worried about is the birth and how he will be after birth..

He's gonna have to be in the NICU a while now, and if he has a heart defect that needs surgery... Even Longer. Bleh. That and the C-section are all I'm worried about now.. that and when I tell my DH him saying he doesnt want anymore kids cause of bad luck. (he WILL say that. lol)

[prayerful wife]

Girl when I say I applaud you, I truly do.  From the moment you've found out about TJ's Downs you have been a rock.  I love the fact that you've been so positive regardless of all the obstacles that you've been faced with.  He's going to be such a lucky little boy to have a mommy like you that he can learn from and depend on.  I think you have a beautiful soul and I know he will inherit that from you.  Though I know it's not going to be easy, if you keep up this attitude your journey will not be as hard as it may seem!  God Bless sweetie and good luck on the next test.  Who knows he may not have a defect at all.

[evthing4reason]

Wow, you're a pretty strong person to be dealing with all this. I understand what you mean when you say you just knew....I also "knew" that of me and my 2 best friends that were due all the same week that "something" was gonna happen, told this to the girls and talked about what to do if it did...never imagined it would be my baby not survivng after 5 months...but i just knew.
Sending "be strong" thoughts your way

[LosingMyMindInGA]

While I want to say I'm sorry that your son has these conditions, it sounds like God has given him to a family who is going to love and support him regardless of his medical problems.  That's probably why God has chose you to be his parents.  I'm sure that with the challenges that lay ahead it's going to be trying at times, but it sounds to me like you guys are ready and willing to overcome any hurdle or roadblock that comes your way and I commend you for that from the bottom of my heart.