Thursday, February 21, 2008

Stories Shared ... but he cannot hear?

So Noah's story is up on .. it is under STORIES and "Trisomy Mosaicism" ... the article is called "Against The Odds" ...

At this point - Noah's hearing is pretty bad. He doesn't register as normal ANYWHERE on the tests. It *could* just be the fluid in his ears... that seems to thicken and stick in there (first set of tubes at the age of 2, the DR said it was like pulling nightcrawlers out of the ground it was SO THICK!) ... or there could be more damage then the minor damage we know about. It's hard.

One other thing, Nathan is just getting over his first ear infection, mild pneumonia, first antibiotics and first diaper rash, on TOP of cutting his first two teeth - ALL IN ONE WEEK TIME! Oye that boy is going to keep me busy! LOL... He's better now :) Finally eating better agian and all that fun stuff ... ::whew:: Last weigh in he FINALLY made it over 11lbs! He was 11lbs 2oz and 24 1/2 inches! WHooooohoooo!!

Monday, February 18, 2008

Just a thought...

Last night's Extream Home Makeover really touched my heart.

Course any show with disabled kids really does. I was sitting there, thinking... this will probably be a debate issues here in a minute, so before I get into it, I'm going to say a few things....

I am Pro-Life .. for myself. For my beliefs. I don't look down on anyone who has had an abortion. I definitely am 100% anti partial birth abortions (how freaking rediculas!! If you are going to give birth, have the baby and give it up for adoption!!) And I don't agree with people who use abortions as birth control. However, I did support a best friend through an abortion - didn't pretend to understand it because her and I had had the same beliefs all our lives, but she was stuck in a situation she created on her own and had a late abortion (early second trimester) ... but she was my friend, so I supported her.

Anyway - I was sitting there thinking... look at this child (well he was an adult, 19) ... and look how amazing his parents are, and how amazing he is. If you know anyone who has a "disabled" child, or have one yourself, I bet that child is an inspiration... that child opened your eyes to the world of special needs and disabilities. They are no different then you and I... they are humans with challenges that they proudly over come and continue on with life normally. Even though, their normal and our "normal" isn't always the same... who knows what normal really is. Everyone's sense of normal is different.

Every once in awhile I get melancholy about how many parents choose to abort their babies because of news ... that they are not "normal" ... they take whatever DR is sitting before them telling them all the horrible things that your child will face, trying to make you feel that the only responsible choice you have is having an abortion ... or "interrupting" the pregnancy, as it was put to me 6 1/2 years ago.

Some parents don't even research... some get so depressed that their dreams of normal babies is shattered... and I understand all of that. However, taking someone's word for it - someone who you don't know, barely know, probably have never met before... seems a little silly to me.

Being part of a group where you see parents struggling with this type of decision all the time... it hurts. You want to tell them that they are crazy if they are even considering it... these children are probably the best thing that ever happened to a lot of us! But you can't.... at least I can't. I'm a firm believer that everyone has the right to their own choices, and values, and beliefs. No one's person's are correct, but they are right for them.

I fought through 5 years of infertility to get Noah. While 4 months pregnant, I was told from amino results, that I was carrying a child with a rare genetic disorder... Mosaic Trisomy 16... my OB never said anything negative.

However I was sent to a geneticist and they have - in my opinion - no bedside manner ... the picture he painted was horrible. Noah would have no quality of life at all... he would be so mentally and physically delayed his life "wouldn't be worth it" ... I sat there and told him "that's not necessarily true" and he stopped - as if he had never been contradicted before ... and he said ... "he WILL be mentally and physically delayed" ... He told me the baby would die in the pregnancy, if not, it would die shortly after birth - and if by some miracle, he went home - he would have NO quality of life. Of course these DRs are trained, I believe, to give you the worst case scenario. His only suggestion... that I "interrupt" the pregnancy. The term threw me for a minute... and then I realized, he was suggestion that I abort this baby who was kicking me (I was about 17 weeks at the time) ... who I have seen WAVE at me on ultrasound.... who I knew at that point was a boy... who had a name... who was already loved... he was suggestion I kill my child I fought for 5 years to have... I told him, "No, that is not an option" ... and he looked at my husband (at the time, my ex now) and said "how do you feel about it" and he put his arm around me and said "I agree with her" ... we were a solid unit there.

I'm not going to pretend the pregnancy was easy, I was terrified through the whole thing. I couldn't buy any baby stuff - brand new anyway. I got some used stuff... was given some stuff... but in the back of my mind, I knew it was possible my baby could die and I didn't want to come home to all these reminders. I bought him some preemie clothes on ebay... and all that... however... in my own head, in my own heart... I knew I just wanted a moment with my baby, at least. Just one moment where he was alive and I could hold him. I would take whatever time I was given .... and love that baby no matter what.

And (looks up) there he is standing in his doorway looking at his brother like he just said the most ridicules thing. Sure he has some delays but they are no where near the picture that DR painted. And I'll have you know, I take him to see the same DR just to show him that he is NOT always right about outcomes. It just bothers me how DRs like this - who have the power to give answers and hope - choose to give you words of horror and death sentences ... and only terrify scared parents further.

They throw around the option of abortion like it's an save all answer when it's not. Noah is one of the best thing that has ever happened to me.

That child showed me things, and touched me in ways that a child who didn't fight for their lives could never do. You ask any mother of a special needs child.... I bet other then wishing their child health instead of struggles they have to go through, if they knew how things would turn out... they wouldn't change anything. These children are no different then the rest of the world...

Friday, February 1, 2008

Noah and Nathan

I'm worried about Noah and Nathan right now....
Noah had a audiology exam and hearing test Monday per my request. He has been saying "huh?" .. "what?" way to often and he doesn't stop until either he looks at you when you are talking or you speak louder, sometimes both... his TV has been turned up to GAWD awful volumes and when you turn it down, he cries because he "cannot hear it!" ... this isn't a normal thing, and it's not a attention thing... and I just KNEW KNEW KNEW that his hearing loss had gotten worse. This time last year (last February actually) ... we had FINALLY after years of failed hearing tests ... were told he had a minor hearing loss in his left ear for higher frequencies ... nothing major but he would probably favor his right ear... and it may be a good idea to get an FM audio system in place for him in school (where the teacher wears a microphone and the child has head phones) ... well today's hearing test .... the results were beyond what I expected. Both his right and left ears have gotten way worse... NEITHER of the results for either ear are in the normal range... infact, it's now considered a "significant loss" ..... he does have a lot of fluid in his ears, and no ear infection ... he may need tubes again... we don't know if this is the reason why his test results were WAY worse or not... he has another test in 2 weeks.
Today I also found out - because I asked his PED what his heart issues were coming home from the NICU ... that I knew they were different then what Noah had... so he read them off, said that all of them were normal heal themselves with time type things except for one thing... and I asked "what is that?" He said... "his aortic valve is misshaped..."
... And you wonder why he isn't gaining weight!?!?! The three signs of issues are rapid breathing, difficulty feeding, and failure to thrive (the 4th this is blueness in the lips) ... I would like to slap someone... Nathan has a Cardiology appt w/ EKG & ECHO ... the urologist & a GI dr on the 28th ...