Here's another cheat post. This is the story of how we found out Jack would have Down syndrome at birth. I'm a nosy type of gal, and love stories about babies and births and how families found out about their babies' Ds. So I posted this before; skip it if you've read it and let me know if you posted your story.
Installment #1 - How we found out
At about 12 weeks pregnant (right after we found out we were pregnant), I decided to do that nuchal fold test, where they measure the back of the baby's neck (via ultrasound). There's some magic number that is a marker for ds. With every pregnancy, I took pretty much all the tests because I like to be prepared. This sounded like an easy one, so I took it. They couldn't get our little one to be in the exact right position, so it didn't work. That was on a Fri. We tried again on Mon., still with no results. I don't really remember what made me decide to have the amnio; I just remember having the appointment and my friend Sherry telling me she would come with me because she didn't want me to go alone. This was really a big deal 'cause she lived a couple of hours away. We found out Jack was a boy while getting prepped, and the actual amnio really wasn't bad. That was on a Wed. On Fri., while I was home, my ob called. "I really hate to tell you this, but your test shows Down Syndrome." I know he said more stuff but I sure don't know what it was. I called my husband at work and told him to come home. He did, and we cried together. We had plans that week-end but cancelled everything. We didn't tell anyone for almost 2 months. I just needed that time to be okay. It was really hard. People kept calling to ask if we heard anything yet and I lied. I said "no news must be good news, ha ha" knowing the whole time I would have to tell them at some point. It's an emotional thing. I honestly wasn't worried that anyone would be mean or anything, I just needed to get to the point where I was emotionally okay telling people because I knew I would be the one reassuring others. I thought no way can I start talking to people about this if I'm breaking down every time. Even my closest friends and our parents. For some reason, I needed to be strong. My dr. was great. He said, at the first visit after we found out, that we wouldn't dwell on the ds unless I had questions or concerns. He wanted me to feel like this was a regular, fun, miraculous pregnancy, just like it was. We finally told our other kids. They decided at once no one would ever make fun of their baby brother and were protective right away. They made me cry in a good way. We then told my parents; I kind of chickened out and told them when I was literally on my way out the door to go 3 hrs. home from a visit with them. After a quick hug, I ran away quick so they could be upset and cry. Then I wrote a big long e-mail to all the friends and family I had an e-mail address for and even asked them to forward it to others. The response was really positive. Sounds anti-climactic, but that was it. I have one friend that I'm really close to and everyone was saying to her "wow, you sure kept that quiet" and she has to say "yeah, cause she didn't tell me" which I feel a little bad about but I just couldn't yet. The rest of the pregnancy was okay; I had gestational diabetes (special diet, blood checks, and even shots in my tummy!) and lots of ultrasounds and non-stress tests and an echocardiogram for Jack and everything came back great. Everyone acted very excited to see our new guy. We had the BEST baby shower. (That'll be another story!)
Tuesday, October 6, 2009
31 For 21 - #5
Okay, so I missed yesterday. It was a busy day! There was school for Jack, then Walmart, home for a nap, football game, dinner, and bed. Doesn't sound like that much but I was pooped by the time Jack went to bed so I did too. Once again, I will mention how much attention this kid gets. It's so funny to me. All he did was sit at the game on his Daddy's lap, smile at those who smiled at him, waved at those who waved at him, and at the end, several people came up and spoke to us. "What a good boy", "how nice he sits", "what a sweet smile", and mostly it's other moms, and pretty much everyone pats his head or his hand. Have a mentioned lately how much I LOVE him?
Sunday, October 4, 2009
31 For 21 - #4
Every so often, I'm reminded of the sad sad sad reality that most women who find out the baby they are carrying has Down syndrome, and they abort. The statistic is something like 90%. (If anyone knows a better estimate, let me know.) I'm right now thinking it's time for Jack to have a nap but he's having so much fun I can't stop watching him. EVERY DAY, I thank God for this little person that I had no idea I needed in my life. He's funny, and silly, and makes us all smile and laugh every day. He can also throw a fit, get into stuff, and make a mess like nobody's business! I started this blog to have a record for myself, of Jack's progress, and remember things we do as a family. But if ONE person reads it, and thinks twice about making a decision that could cause them years and years of grief, I'll feel a little happier.
And just so we end on a happier note - this is about 2 yrs ago but I like it!
And just so we end on a happier note - this is about 2 yrs ago but I like it!
Saturday, October 3, 2009
31 For 21 - #3
Okay, here is my ds related post today.
Babies and toddlers with Down syndrome are cute! Here are 2 examples:
Granted, I'm a little bit predjudiced, but man, that is a cute kid!
Babies and toddlers with Down syndrome are cute! Here are 2 examples:
Granted, I'm a little bit predjudiced, but man, that is a cute kid!
Andrew
This post is mainly for me. I know, I'm supposed to be posting about ds, but I'll do that later.
My Andrew plays football for his high school. If you know me, you know that. He played soccer and tball when he was little, but he's not played organized sports since probably 3rd grade. So when he originally wanted to play football as a freshman, my first thought was "cool!" followed by "oh no - you might get hurt!" but we let him play anyway. And he LOVES it! He's not been very athletically inclined before now, but he goes to every practice, every game, every early morning weight lifting session, every Sun morning film. It takes time away from other things our family could do. He's not the very best player on the team so he doesn't get to play every minute. As a matter of fact, he hasn't gotten to play in a varsity game this whole season. He's a junior. He did get asked to play down on jv, which is fine and great with us because he gets to play in the games (I guess some players or parents were upset by getting asked to play down but we were happy he'd get field time!)
I was starting to get discouraged and sad about this varsity season and Andrew's lack of playing time. But last night changed all that! We were playing our biggest rival - the other team here in our town. And we were winning! It was a great game; touchdowns and terrific plays by both teams. We sat on the 50 yd line right behind our guys, high enough up to see well but close enough so we could hear the coaches and guys on the team. (We, meaning dh and I and lots of other parents of players.) During the 4th quarter, I heard it - "Smith! Where's Smith?!" yelled by the lineman coach. Holy cow! Where is he? My eyes were going back and forth on the line, my heart was pounding, and there he is, running toward the coach. There he goes, my #65, running into the game on the d line. We got the ball so o line was up and I thought it was over. By this time I was so excited for him I almost cried! Stupid Mom emotions! But then he stayed in for the offense and played 'til the end of the game! I don't think my eyes have been open that wide before! I didn't want to miss a second!
So of course I made a scene at the bus but by the time the guys were back at school I had myself under control. I was on some kind of weird "I'm sooo psyched for my kid" high that I'm still feeling a little of it today. (Just breathe Julie!) So now all the laundry, running around to far away places (twice a week sometimes because of jv), stress over homework and all these practices finally feels okay. The AMAZING smile on my kid's face is worth it ALL! (He, for the record, thinks I'm outta control too but he's riding his own high so lets me get away with it!)
Like I said, this was just for me. I finally "got" it - why all the hard work is worth it. And it only gets better from here. Pics ARE coming!
My Andrew plays football for his high school. If you know me, you know that. He played soccer and tball when he was little, but he's not played organized sports since probably 3rd grade. So when he originally wanted to play football as a freshman, my first thought was "cool!" followed by "oh no - you might get hurt!" but we let him play anyway. And he LOVES it! He's not been very athletically inclined before now, but he goes to every practice, every game, every early morning weight lifting session, every Sun morning film. It takes time away from other things our family could do. He's not the very best player on the team so he doesn't get to play every minute. As a matter of fact, he hasn't gotten to play in a varsity game this whole season. He's a junior. He did get asked to play down on jv, which is fine and great with us because he gets to play in the games (I guess some players or parents were upset by getting asked to play down but we were happy he'd get field time!)
I was starting to get discouraged and sad about this varsity season and Andrew's lack of playing time. But last night changed all that! We were playing our biggest rival - the other team here in our town. And we were winning! It was a great game; touchdowns and terrific plays by both teams. We sat on the 50 yd line right behind our guys, high enough up to see well but close enough so we could hear the coaches and guys on the team. (We, meaning dh and I and lots of other parents of players.) During the 4th quarter, I heard it - "Smith! Where's Smith?!" yelled by the lineman coach. Holy cow! Where is he? My eyes were going back and forth on the line, my heart was pounding, and there he is, running toward the coach. There he goes, my #65, running into the game on the d line. We got the ball so o line was up and I thought it was over. By this time I was so excited for him I almost cried! Stupid Mom emotions! But then he stayed in for the offense and played 'til the end of the game! I don't think my eyes have been open that wide before! I didn't want to miss a second!
So of course I made a scene at the bus but by the time the guys were back at school I had myself under control. I was on some kind of weird "I'm sooo psyched for my kid" high that I'm still feeling a little of it today. (Just breathe Julie!) So now all the laundry, running around to far away places (twice a week sometimes because of jv), stress over homework and all these practices finally feels okay. The AMAZING smile on my kid's face is worth it ALL! (He, for the record, thinks I'm outta control too but he's riding his own high so lets me get away with it!)
Like I said, this was just for me. I finally "got" it - why all the hard work is worth it. And it only gets better from here. Pics ARE coming!
Friday, October 2, 2009
31 For 21 - #2
I told you I was gonna cheat so here's the first :). I "borrowed" this from my friend Meredith's blog. (If you read this Meredith, Thank You!!) If you don't already, go visit her family.
Meredith said:
The three types of Ds are "non-disjunction Trisomy 21" (ie, regular plain old Ds LOL), Mosaic Ds, and Translocation Ds. Here's what those mean:
Non-disjunction, or regular T21 accounts for a majority of cases of Ds. I think the number is around 95%. A typical person has 46 chromosomes, which are found in 23 pairs. With T21 there are three (trisomy) of the 21st chromosome. In regular plain old T21 the person has three 21's in every cell of their body. There is no "mild case" or "severe case" of T21, because it is in every cell. It's actually an over-abundance of information that is sent to the body, not missing info. T21 is not a hereditary disorder- it's not handed down in families. It is an anomoly that occurrs during conception, or even is carried within the egg or sperm. Something neat I learned recently is that people with T21 tend not to get cancers other than Leukemia. Researchers are studying the 21st chromosome to see if they can find the cure for cancer!
Mosaic Down Syndrome is also a triplicate of the 21st chromosome, but it is not in every cell of the body. This happens during cell division where anytime in the beginning formation of the body the cells divides and some get an extra 21st chromosome. From that point out every cell division from the affected cell has T21. Mosaic Ds may not be diagnosed in people who have very small portions of their body affected. If it is diagnosed, the range of ability, intelligence, and health issues has been found to be just as varying as that of a person with full T21. Many people with T21 are very high functioning individuals who are integrated into the school system and society, others will require lifetime care. Some have very few health issues, others have everything in the book. For mosaic Ds it is believed that the areas a person has the T21 can determine their ability level and certain physical characteristics as well. MDS accounts for about 2-3% of cases of Ds.
Translocation Down syndrome is a little different from the first two, but again, it presents itself the same way as T21 and MDS. Translocation is only found I believe in about 1-3% of those diagnosed with Ds. Translocation CAN be an inherited trait (one parent is a carrier and the child gets it from the parent) or it can occur spontaneously. Translocation means that a third 21st chromosome (or a piece of the 21st) is attached to another chromosome. The most common translocation is called 14:21 because the 21st chromosome is attached to the 14th. Another type of translocation is 21:21 where the third 21st chromosome is actually attached to another 21st chromosome.
And just for fun... there is technically a combined Ds which is called Mosaic Translocation, and that's where only a portion of the cells of the body have the translocated 21st chromosome :) How's that for tricky??
She explained that much better than I could.
Meredith said:
The three types of Ds are "non-disjunction Trisomy 21" (ie, regular plain old Ds LOL), Mosaic Ds, and Translocation Ds. Here's what those mean:
Non-disjunction, or regular T21 accounts for a majority of cases of Ds. I think the number is around 95%. A typical person has 46 chromosomes, which are found in 23 pairs. With T21 there are three (trisomy) of the 21st chromosome. In regular plain old T21 the person has three 21's in every cell of their body. There is no "mild case" or "severe case" of T21, because it is in every cell. It's actually an over-abundance of information that is sent to the body, not missing info. T21 is not a hereditary disorder- it's not handed down in families. It is an anomoly that occurrs during conception, or even is carried within the egg or sperm. Something neat I learned recently is that people with T21 tend not to get cancers other than Leukemia. Researchers are studying the 21st chromosome to see if they can find the cure for cancer!
Mosaic Down Syndrome is also a triplicate of the 21st chromosome, but it is not in every cell of the body. This happens during cell division where anytime in the beginning formation of the body the cells divides and some get an extra 21st chromosome. From that point out every cell division from the affected cell has T21. Mosaic Ds may not be diagnosed in people who have very small portions of their body affected. If it is diagnosed, the range of ability, intelligence, and health issues has been found to be just as varying as that of a person with full T21. Many people with T21 are very high functioning individuals who are integrated into the school system and society, others will require lifetime care. Some have very few health issues, others have everything in the book. For mosaic Ds it is believed that the areas a person has the T21 can determine their ability level and certain physical characteristics as well. MDS accounts for about 2-3% of cases of Ds.
Translocation Down syndrome is a little different from the first two, but again, it presents itself the same way as T21 and MDS. Translocation is only found I believe in about 1-3% of those diagnosed with Ds. Translocation CAN be an inherited trait (one parent is a carrier and the child gets it from the parent) or it can occur spontaneously. Translocation means that a third 21st chromosome (or a piece of the 21st) is attached to another chromosome. The most common translocation is called 14:21 because the 21st chromosome is attached to the 14th. Another type of translocation is 21:21 where the third 21st chromosome is actually attached to another 21st chromosome.
And just for fun... there is technically a combined Ds which is called Mosaic Translocation, and that's where only a portion of the cells of the body have the translocated 21st chromosome :) How's that for tricky??
She explained that much better than I could.
Thursday, October 1, 2009
31 for 21!
So, it's October!
That means Down Syndrome Awareness month! Of course everyone who reads my blog probably already knows that but just in case you didn't, now you do! Of course I celebrate Ds Awareness month because my wonderful, amazing, sweet, adorable little Jackson Caleb!
So for this month, I'm going to try to write 1 post per day. I'll cheat some days and give links to previous posts about technical ds info, or Jack's stories (how we found out, nicu stay, or heart surgery). I may even link to some of our friends' blogs that have interesting stories. If you have any questions or stories - please share!
Last year I made some Ds awareness ribbons that M and I wore on our jackets and even gave some away. If anyone wants one, let me know. I have lots more ribbon! Here's M modeling our ribbons and a close-up of one:
So whaddaya know? My first post is done!
That means Down Syndrome Awareness month! Of course everyone who reads my blog probably already knows that but just in case you didn't, now you do! Of course I celebrate Ds Awareness month because my wonderful, amazing, sweet, adorable little Jackson Caleb!
So for this month, I'm going to try to write 1 post per day. I'll cheat some days and give links to previous posts about technical ds info, or Jack's stories (how we found out, nicu stay, or heart surgery). I may even link to some of our friends' blogs that have interesting stories. If you have any questions or stories - please share!
Last year I made some Ds awareness ribbons that M and I wore on our jackets and even gave some away. If anyone wants one, let me know. I have lots more ribbon! Here's M modeling our ribbons and a close-up of one:
So whaddaya know? My first post is done!
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