Thursday, October 30, 2008

31 For 21 - #28

Okay so here are a couple of pics that our friend RK took of Jack and her daughter Braska, on his birthday.

And this is my favorite!

That's the best part of Jack's birthday! Thanks for the photos RK!!!

Wednesday, October 29, 2008

31 For 21 - #27

I'm trying to squeeze in another post before bed! Here are a couple of pics from last fall that I thought were funny. A put T up on the basketball hoop and it held him! So then of course, they had to put Jack up there too (but I didn't let A let go of him!)

The next one is from when we went to the Down Syndrome Convention in Kansas City last year. The light was really neat was I took several. That was a really great experience. If you have a loved one with ds, you should go to a convention.

I just realized I have almost half a year and not many posts left! I'll have to try to squeeze them all in over the next couple of days. Lots more pics, coming soon!

31 For 21 - #26

We've been kinda busy so I'm even more behind! The rest of Jack's birthday was spent at the VERY cold football game. We all had winter coats, and gloves, and drank hot chocolate! It was ridiculously cold. There was a rude lady that said we were crazy for having our baby out in that type of weather, but I checked him over and he had his coat buttoned up, hood on, covered in his blanket, and we were sitting on another that I pulled the end up on he and I. Every so often he would stick a little hand out but I got it all covered up again. Allan looked him over and loudly announced Jack was probably warmer than the rest of us. The good news is we won! 33-0! Best game they played yet! The last game is this Fri and then we're done 'til next year. Makes me sad. So when we got home I made Allan make funny faces so Jack would smile and this is what we got:

Cute, huh? Thanks to everyone who gave him Happy Birthday wishes! You guys are a big part of our family now and we really appreciate it!

Monday, October 27, 2008

31 For 21 - #25


We started out by sleeping late. Then we drove to the store for a bag of candy, and met Ty and his class for lunch; then they got the candy! Then Jack and I went and picked up his friend Braska and her mommy and we all went to the mall! We had some lunch and Jack and Braska played in the little kid play place. It wasn't too crowded so they got to play 'til they were tired! Jack passed out on the way home But Braska was hanging in there when we dropped them off. If only I had remembered my camera! (Maybe Braska's mom will share some of her pics with us.) Now, time for early dinner, get the big kids' homework done, and off to the JV game we go! Please pray that we don't freeze to death! Pics later!

Sunday, October 26, 2008

31 For 21 - #24

Today we went to the pumpkin patch! We met with some other families from the Down Syndrome Assoc. It was the place our family usually goes to anyway so we had a geat time. We went on the usual hayride, ate snacks, and checked out the pumpkins!

Here's our annual "at the Punkin' Patch" pic:

and here's last summer; Jack and Ty:

31 for 21 - #23

Yesterday I went shopping for the rest of the stuff for Jack's birthday. You know, plates, napkins, tablecover, stuff like that. I ordered the cake last week, I ordered some balloons yesterday, and I'll get snack stuff and ice cream when I pick up the cake. I bought his birthday presents way back last year when I found the stuff (you'll just have to wait to find out what it is!) and I already have wrapping paper to go with the "theme". Now, I just have to clean up the house (those in-laws live in better homes and gardens land and don't get our messy house), while getting ready for Halloween and all the stuff I have to do for PTO. I'm gonna be TIRED this week. Oh yeah , the party theme? PIRATES, of course!

BTW, our friend Adelynn is doing well after her heart surgery! You can check on her or any of our other friends by clicking on any of the links on the left.

Friday, October 24, 2008

31 For 21 - #22

It's starting to hit me that Jack is about to turn 2. I'm not ready! I said this last year, and the year before, all the way to the hospital. I keep thinking about his birth, and about how I felt last year at his first birthday, after finally bringing him home and then going through the open heart surgery. Until he was about 1 1/2, I cried everyday at some point because I was so glad he was our baby. I can be weepy but this baby has put me over the top! This past year we've had some milestones as well. None quite so dramatic as OHS, but important ones in their own right. Jack has teeth! He walks! When we were camping last weekend, he wanted to sit on Andrew's lap at the campfire. Then he fell asleep on Andrew's shoulder! I sooo wish I had my camera for that but of course, I left it here at home. That's a milestone because although Andrew has always loved Jack, he was a little bit afraid of this little breakable baby. Jack is finally big enough and sturdy enough for Drew to handle him. Jack drinks from a straw and holds his own spoon for breakfast. He doesn't talk but he points like a pro! He gets into EVERYTHING, has the BEST smile, and gives the most amazing hugs! When we were at a high school football game a couple of weeks ago, he stood up on my lap and gave me a big hug. I heard a lady behind me say, "awww, look at his little hands!". He brings me joy every single day.

This is how M set him up to watch TV:

And here is the little guy checking out the camper with M before our first trip of the season last year:

Thursday, October 23, 2008

31 For 21 - #21

Okay, this will be a quick one. Last night Jack was wandering around the house as usual (this is getting stressful as we never know what he's into!) and he went into his room. I think this is kinda cool so I'm hoping to move some things around so there's stuff for him to do in there and he'll like to hang out there. But last night there wasn't a lot, so he picked up his shoe and carried it out to the kitchen, where we could see him. He sat down on the floor and sure enough, tried to put on his shoe! It was so cute! Of course, by the time I got the camera all he wanted to do with it was put it into a plastic box that getting ready to go back to the camper (thanks, BTW to our OT who we blame for all this "putting in" we seem to having problems with - think trash can!) So, no pic. But it was cute.

And something I almost forgot! One of our newest friends, Miss Adelynn, is having her open heart surgery today. Please keep her in your thoughts and prayers as she goes through this surgery and her recovery afterwards. We "met" through my aunt, and hope to get to meet them for real someday.

Wednesday, October 22, 2008

Installment # 5 - the Surgery

At the time we came home, our wonderful heart Dr was saying at about 6 mos. is when we'll probably do the surgery to close those holes. In the meantime, we were to look for signs of heart failure and visit him at least every month. At our January appt., he said he would be talking to the surgeon about Jack. While out furniture shopping, I got the call on my cell phone, we need to schedule a date for surgery, the nurse will call you. I actually had a moment when I felt light-headed, like I might pass out. My MIL asked if I was okay and I think I said no. Everything happened so quickly after that. That was Thurs, they wanted us to come in for pre-surgery stuff the next day and have surgery Mon, I said no because we needed to make arrangements for the other kids, so we were to go in on Mon. and the surgery would be Tues! I called our pastor who got us in for Jack's baptism that Sun and we had his picture taken on Sat (no scar pics).

We got to the hosp. Tues morning and I think we were in shock. It didn't become real 'til I handed him to the anesthesiologist. Our wonderful pastor sat with us awhile that morning, but mostly, it was me and Allan. Finally, the surgeon came out and said everything went well and they would come get us to see him soon! He slept all that day. On Wed. he was still out of it, but restless. I had to stand by his bed and hold his pacifier for him or he fussed, 'til he fell asleep for 20 mins. (He never took a paci at home.) By that evening, he settled down and finally really went to sleep. Thurs., the nurse said "he's going to PICU!" which meant he was doing great! He was awake and alert and I got to carry him to his new room. He didn't get any morphine after Wed. evening and I learned you have to ask for Tylenol even if your baby has his heart cut open! So Thurs and Fri progressed, and Sat morning the surgeon came in and said "so, you want to go home?". I said yes and called Allan and he came and got us! So be warned, these pics aren't pretty but his recovery was amazing!



Saturday (right before we went home):

The following Thurs (9 days post-surgery):

Pretty good huh?
And here's one of his scar from this past summer:

So now Jackson has a very healthy heart and sometimes I'm actually glad it was bad enough for surgery because now we don't have to worry. I still think of it as a miracle. Here's another interesting and wonderful thing that happened - exactly one week after surgery, and on my birthday, Jackson gave me a wow, there you are! smile for the first time! I cried. It was amazing.

Tuesday, October 21, 2008

31 For 21 - #19

I am constantly surprized at people's attitudes. I spoke with a lady the other day that made a comment about how "normal" Jackson is. I was a little irked (he is who he is and I feel "normal" is who he is regardless of his progress, does that make sense?). But I realized she didn't mean any offense, and may even have been having one of those "lightbulb moments". Like I've said before, I feel very lucky that our friends and family and even other people we encounter daily are so very positive about Jack. The families that choose to terminate a viable pregnancy because they find out the baby has Down Syndrome need to spend a day at my house. They would see that Jack loves his brothers and sister like any other almost 2yr old would. They would see a toddler who has decided to throw everything he can get his hands on into the trash can, laughing when he gets caught! They would see a mischievous little boy who gets waaaaaaay too many kisses from his mommy. They would see a family, who didn't know what all they were missing until God blessed them with an angel. And then I think they would weep with what they had done, 'cause we truly are blessed.

Monday, October 20, 2008

Installment #4 - The Baby Has Heart Issues

This is also the next 31 for 21 entry.

If you need a review you can read the story of Jack's birth here. They took Jack away to the nursery to get him cleaned up and let them get me into a room. All our company left and Allan and I congraduated each other on another beautiful baby. This is where the story gets tough because so much happened and there's so much to remember. I was pretty sleepy and dozing a bit, and a dr came in. Without even making sure I'm awake, he starts taking about how Jack is having pulmonary hypertension and he's going to the nicu and he's on O2, blah, blah, blah. I'm not really getting it because I was so tired, and who is this guy?, and I was told my baby didn't have any heart issues bacause our fetal echo came back perfect so what the heck is he talking about?! I was just sure this guy was crazy and if they took the baby to the nicu I'd never get to see him again and we were nursing for cryin' out loud! I'm still a little bitter about all that, can you tell?

So the next few days were just crazy. Jack never got to come to my room and some relatives came to visit and everyone had to look at him through glass, even his brothers and sister. That Sun, he had a partial blood transfusion, where they take some of his blood out 'cause it's so thick and replace it with saline so it will flow better through his system. (Pulmonary Hypertension is like high blood pressure but in your lungs.) So the poor baby is under a "cake plate" (for oxygen), hooked up to lots of monitors, has an IV, and I can't hold him. They're saying they don't know when he'll get to come home and yes, there are 2 holes in his heart causing the ph. I was upset about that, my hormones are nuts, and I have 3 other kids who I don't want to miss out on Halloween activities and trick-or-treating.

They moved him into a covered bed (hence the Jack-in-the-box photos), and we lingered like that for awhile. Jack had a hole between the 2 upper chambers of his heart (Arterial Septal Defect - ASD) and another between the 2 lower chambers (Ventriculal Septal Defect - VSD) and something called a Patent Ductus Arteriosus (PDA) which is when the blood vessel between the pumonary artery and the aorta (used during fetal development) doesn't close after birth. All 3 would need to be closed. After 2 1/2 weeks of getting the kids off to school, running to the hospital and spending as much time there as I could, pumping, coming home to get the kids home, doing homework, etc. with them, going back to the hosp. with Allan after he got home from work, getting home to make sure everyone went to bed, and doing it all the next day, I was so done and started asking even more when Jack would get to come home. I know it was only a few weeks but it still makes me cry how horrible it felt. It was a long process of getting him stabilized, then weaning him off oxygen so he could be in his little bassinet just being monitored. The biggest problem was he was using so much energy to maintain his temp and breathe without O2, that he needed to be tube fed 'cause he could not finish a bottle. We tried the breastfeeding a few times, but we had serious latching problems because of his sleepiness and of course they wanted to monitor his intake so we bottle-fed what I pumped. When we were there, we would give him a bottle for 30 mins and the rest went in through the tube. When we weren't, they just tubed him. They kept saying they wanted to make sure he could eat what they wanted him to and keep him monitored. When it became obvious that was what was keeping him there, I finally told them we were taking him home and they needed to teach us how do place the tube. Yes, it was an ugly day for the Dr but I'm sure he's gotten over it by now. So, we learned baby CPR and how to place an ng tube, and brought our baby home! We didn't tell the kids because I wasn't sure if we'd pull it off so here is M, being surprized that her baby is really home!

31 For 21 - #17

So I forgot to mention a neat thing that happened to me last Fri. I had made those Down Syndrome Awareness ribbons and was wearing one at the grocery store. Of course, Jack was with me and a nice older lady stopped and started talking about Jack, you know "oh what a cute boy! I bet he's a good boy, isn't he?, stuff like that. Well then she says "I have one just like him at home, and he's 52". Wow! So of course I asked how he's doing and she told me he went to school when he was 4 and after he graduated, he worked at the same place for 31 years! He rode the bus by himself every day. He was very healthy until about 4 years ago, when he started having seizures, and had to quit his job. She indicated he's always lived with her and her husband and he's not in great health now, but still smart and happy. So we had this nice conversation, and then I realized I had some of those ribbons in my pocket and I gave her one. She said she didn't even know it was Down Syndrome Awareness month and when I saw her leaving the store, she had pinned it to her jacket. What a nice lady! Jack even gave her the ole fist closing bye bye wave, which he doesn't do for everyone, you know!

So here are the ribbons - M is modeling hers (I caught her on the way to school this morning).

Sunday, October 19, 2008

31 For 21 - #16

Okay, just got back from camping! I figure I'll have to do 2 a day for a couple of days to get all 31 posts in so here's one!

Jack had a great time! He spent a lot of time yesterday walking in the grass, and the rocks, and the mulch under the playground equipment! Won't his PT be proud? I took a couple great pics with my friend's camera since I forgot mine (sheesh) so I'll post 'em when I get 'em! He still falls down a lot but I'm seeing improvement in his balance and that was certainly a test. He also enjoyed the campfire (no walking there!) and watching us play mini golf. He did not so much enjoy swinging (he likes it at home) and going down the slide with Ty. He sleeps in his pack-n-play which we set up on the laid-down table. Every morning, he gets up and opens the curtains and peeks out the window. It's so dang cute! I love watching him and listening to him talk to himself when he gets up. I left his socks on him to go to sleep 'cause it was so chilly and he had a great time talking to his socks and then taking them off. I love camping and spending time with the kids without tv or computer or video games.

I should probably move along in my baby Jack pics. So here's some from Apr. of last year. This is what happens when you have big brothers:

I think Jack will be able to hold his own on the playground, don't you??

Thursday, October 16, 2008

31 For 21 - #15

I've been wanting to write a post about what happened when we found out about Jack's heart issues but that's a big one and I don't seem to ever have the time to do it. I really want to spend the time to think about it and do it right. Maybe next week-end since I just found out I screwed up some plans my friend and I had. Never mind that - no more crying tonight!

I made a ribbon for Down Syndrome Awareness month and M wore it to school. I decided I needed one too, and her teacher wanted one, so last night I made a bunch to give away. If I remember, I'll take a pic of ours so you can see. Came out pretty nice if I do say so myself.

So what did Jack do today? Got a bath (he loves those), hung out with Grandma, went to big brother's orchestra concert, and finished off the day with a giant fit (those people that say kids with ds are always soooo happy shoulda been here about 8-9pm!). He knows "nose" and will touch yours and then his own when you ask him. So cute! He also "talks" to his toys when he's playing. No actual words, just a low-pitched noise. I keep wanting to video it but haven't caught him doing it yet.

Since we talked about baths - here's a cute one:

See the scar? I have lots more scar pics! Coming soon!

Wednesday, October 15, 2008

31 For 21 - #14

You know how some days you just can't seem to get anything done? I totally had one of those today. I can't seem to focus either. This is a crazy week and what makes me more nuts is I thought it was going to be an easy one at the end of the weekend! Jack sick (he is slowly getting better), more meetings than I remembered, and Andrew remembering to tell me yesterday that he a concert tomorrow(!) are boggling my mind apparently. Tomorrow is a big fundraising day at Ty's school, so gotta leave Jack with Grandma so I can do that, and make sure Drew's tux is ready, and then we're supposed to go camping this weekend. How I'm gonna get ready for that, I DON'T KNOW!! I think I'll be Scarlett O'Hara and think about that tomorrow!

I don't have much ds related tonight but you know what, that's okay. Jack is our baby and a member of our family FIRST and sometimes we don't have room for ds!

BTW, my phone dried out and is working again! I've got pics and everything back! Now I can call people! (If Allan was conscious, he'd roll his eyes at me!)

Our pic tonight is another favorite! Jack's wearing another of Ty's outfits.

Tuesday, October 14, 2008

31 For 21 - #13

I'm a little behind so we get 2 posts today - Yay!

Jack is sick today. He has a cold. There's a snotty nose, rattly breathing, and terrible cough. We're using the nebulizer on him, and I've got a humidifier and a vaporizer (waterless) in his room. Smells good in there in the morning. We cancelled therapy for today since he spent 1/2 of the day crying, which is very unlike Jack. Send good thoughts for him to feel better tomorrow!

Jack likes to play in the dog's water. Sometimes he splashes, sometimes he dunks his toys in, sometimes he just flat-out dumps it on the floor. Today, he put my cell phone in it. Grrrr. So I can make calls on it (if I know the number) and I can answer it, but the screen is blank! I can't see if I missed any calls, can't look up numbers, can't even remember how to re-dial! I'm hoping the screen will come back after it dries but what if it doesn't?! I guess I'll be getting a Christmas present early which is a bummer 'cause then I won't get anything good on Christmas! Send good thoughts for the phone to get better too!

So, here's my little guy on his baptism day. There's a story about that but it will be in another post.

My mom bought this outfit for Ty. I have a pic of him in it too. When the baptism came up so quickly, it fit the bill perfectly!

31 For 21 - #12

I'm going to try to do my 21 THINGS ABOUT JACKSON LIST:

1. I think Jackson would stay in bed all day if I never went in and got him.
2. He loves his sister and brothers equally and gets so happy when they come home from school.
3. We watch him every time he goes near the dog 'cause he likes to pull her ears (she does NOT like that).
4. He walks very consistently but still can't run. When he tries, he falls.
5. Jack still likes his toys that have lights and sound best.
6. His blue blanket that a friend embroidered with his name and birth date can cure most evils (including injuries, hurt feelings, tiredness, and boredom).
7. He still tries to taste everything he comes in contact with.
8. Jack still doesn't care for his SureSteps but he's getting better wearing them.
9. He drinks from a straw or a water bottle (though messy) and we're starting to try using an open cup.
10. He's pretty timid with strangers but slowly warms up to our friends he sees often.
11. He's learning to use a spoon to eat his cereal and yogurt.
12. This year, Jack will be a Jack-O-Lantern for Halloween. Last year he was a Jack Hammer. Next year, he'll be a Jack -in-the-Box. See a trend?!
13. Jack doesn'y say any words or use signs. Somehow, we seem to know what he wants anyway. Hopefully, he will get some words soo.
14. I still use baby wash on him at bathtime, and just sit and smell him afterwards.
15. He's only had 2 haircuts.
16. Jack likes to eat. Doesn't matter too much what it is.
17. Jack likes to shut things - doors, dishwashers, fridges. And then he claps and you have to say "Yay!!".
18. Last year at this time, he pulled hair and removed earrings. Now, he only does that once in a while ;).
19. Jack has the best smile, and giggle. Makes me smile to think of it!
20. I could look at his face all day.
21. Lately, Jack has been throwing things away. Things like the remote, his cup, toys, things from the cabinet, random articles of clothing (not his). We hope this phase will end very soon.

Sunday, October 12, 2008

31 For 21 - #11

I'm tired. The family reunion was okay. My wonderful aunt cleaned up my computer for me so it's working great. I'm still tired. So this is just going to be more baby Jack pics and off to bed.

Here's Jack with his ng tube!

Here's one of my favorites (my kids tell me I say that a lot but it is!):

Saturday, October 11, 2008

31 for 21 - #10

So we're out of town this evening. We drove to my parent's house for a family reunion tomorrow. Pretty much no one has met Jack yet and it's been awhile since anyone has seen the other kids. It will be interesting.

Our ds fact today is an easy one. World Down Syndrome Day is held every year on Mar.21st. The first one was in 2006 (coincidentally the year of Jack's birth!). No pics today since we aren't at home. I'll catch up tomorrow!

Friday, October 10, 2008

31 For 21 - #9

So today, Jack and I went to school! It was a pre-pre-pre-school class, for babies and their parents; kind of a get ready for school class. It was only an hour. We sang songs and played with a parchute and dug through a pile of shredded paper! But are you ready for the best part? When we got there, guess who we saw playing on the rug? Nebraska! Yep, our friend from the blogging world, and the local ds group, and our online forum, and real life! Wish I'd gotten a pic (I even had my camera) but I didn't think about it 'til I was driving away :(. You should hear her say "Jack". What a cutie! Jack had a good time and we're ready to go again next month.

Then, after a couple quick errands and a short nap, off to the parade we went! It was loud, and hot, and lots of fun! Jack's big brother got to march with the other JV players and hand out candy. He made sure to give lots to Ty and Ty's friends. After that, it was time for a bit of hanging out at home, dinner, and back up to school for the Homecoming game! We won - Yay! What a long day. We're all pooped.

So here are Jack getting ready for school, our parade, and yet another baby Jack. (These baby pics are to celebrate 31 for 21 you know!) This is one of my favorites!

Thursday, October 9, 2008

31 For 21 - #8

What's on my mind today has to do with me. I've had a child at our elementary school down the road for 11 years. I've been involved with the PTA for the last 7, and for the last 6 I've been on the executive board. This is my last year at the school (unless Jack goes there, but we don't know yet) and I don't know what I'm going to do with myself. I've enjoyed working there. I can take my other kids, it's on my own time, I'm my own boss. I'm having a hard time thinking this is my last year. Sheesh, guess I'm feeling sorry for myself.

So the next thing is, tomorrow is the Homecoming parade. The high school is next to the elementary so I've gone to the parade probably 10 years. This is Andrew's 2nd year getting to be in the parade since he's on the football team and it's so fun! I was so proud to see him last year I almost cried so I expect I will this year too. Everyone in the parade throws candy and the band is playing and the floats are horrible and the little kids are yelling and oh - so much fun! Probably I'll have a pic of that tomorrow.

ds fact for today:
Did you know that there are waiting lists of people in this country wanting to adopt a baby with Down Syndrome? It's true. Honestly, once you connect with one of these amazing, special children, you're addicted. Lord knows I am!!

Okay, here's another of my favorite pics from when Jack was a little baby. This one has Ty too and he looks so little too! He adored Jack from the very beginning and I can't wait to see how they'll get along when they're older.

Wednesday, October 8, 2008

31 For 21 - #7

Got this from Randa-Kay at JustRK. It's random questions and I may actually have answers for these so figured I'd give it a shot!

1. Why did you start to blog (either your own or reading mine!)?

I joined an online community ( and lots of the members there had a blog. So I started reading occasionally and decided that would be a good way for me to write about this journey we're on because of Cap'n Jack, and a good way to keep in touch with far-away folks. It's been awfully fun!

2. How many hits do you get in a day, if you have a blog and a SiteMeter or something like that?

I have no idea. Until I read this question I forgot that I have a site meter. Guess I should check it, huh?

3. If you lost your ability to read blogs or post on you blog today, what would you miss most?

The connection with "friends" that I may not have even met! You guys have all become so important to me.

4. What is something you've learned from another blog that you'll always remember?

Good question. I've learned how blogging is a good way to vent, and a good way to show off my little man! I don't have anything specific, but I've learned that it's going to be okay, and sometimes better than okay.

Okay, here's our pic from the past!

Tuesday, October 7, 2008

31 For 21 - #6

ds fact for today: ds has several physical characteristics that can include low muscle tone, flatter nasal bridge than usual, a bit of a slant &/or extra folds of skin at the corners of the eyes, smaller, low-set ears, and a large gap between the big toe and the other toes. This is not a comprehensive list, nor does a baby have to have all of these features. Also there is no correlation between physical features and mental comprehension. Since there is pretty much always some degree of mental retardation (which only means the person probably has some delay in learning skills), this is important to remember. Jack seems to be a bit better with gross motor skills and behind a bit more in speech. He's walking everywhere (still having a problem with shoes) and going up and down stairs. But he won't mimic sounds, or say words, or even use signs. Stinker. We know what he's thinking most of the time so we're being patient. He comprehends, just won't prove it! He cracks us up every day. Today, he waited 'til I was looking and tried to throw his sippy cup in the trash; then he LAUGHED!

Pic from last year? Okay,

Monday, October 6, 2008

31 For 21 - #5

I'm not quite caught up yet but here we go again.

The last form of ds is Mosaicism. Only about 1% of people with ds have this form. Mosaicism means not SOME of the cells have the extra chromasome, but not all. This happens when the faulty division occurs AFTER the first time the cells divide, after conception. In the other 2 types, the faulty cell division occurs at or before fertilization. Confusing? Yes. Please ask questions so I can clarify.

As for what we did today? Football baby! Andrew's team won, 22-10! Woo Hoo! We went to Quick Trip for a giant soda to celebrate! Pathetic, I know but we didn't have much time and the other kids had homework so we did the quick, cheap celebration. It was a great game! Here's a blurry pic of our hero:

And for our Jackson pic of the day,

We learned how to snuggle together pretty darn quick after he came home!


Okay, you have to see this! Remember our friend, "Sincess Kennedy"? Her mommy is celebrating her one year blogoversary! (I think she made that up.) ANYWAY, she's having an amazing giveaway so please go check it out!

Life With My Special Ks

Sunday, October 5, 2008

31 For 21 - #4

Today, we went to the zoo! It was a beautiful day so off we went. It was Jack's first time there, and he seemed interested in a few of the animals. Some were more difficult to see than others. He watched the elephants and rhinos, the giraffees and the penguins. The lions and tigers he slept through. I wonder what he would've thought of the big aviary. I guess we'll find out next time.

Here's a funny from last night:
When I was in the bathroom yesterday, I realized there was no TP. So I yelled out the door to M, who I knew was near. As she handed me in a new roll, I commented, "I don't think I've had to yell for TP since I was little". So what was her reply? "Well, this must be a big day for you then." WHAT??? She's so funny. Then I have my Tyler, who is going to get in such trouble some day at school. I walked into the kitchen last night to see Allan asleep at the breakfast bar and Ty standing at the counter, holding a spoon, in front of a tub of ice cream. So I said, "hey, why is the ice cream out?" Without even thinking about it, Ty says, "Dad was eating it". Did not even smile! What a stinker!

ds fact:
One of the other types of ds is Translocation Trisomy 21. This means there are still 3 of the 21st chromasome, but it's attached to another chomasome, usually #14 or one of the other #21s. Here is the interesting part of this type of ds - this can actually result because one of the parents is a balanced carrier. This means the parent has the correct # of chromasomes, but one pair is stuck together. This can result in the increased chance of future pregnancies resulting in ds as well. The chance of this happening is only about 2 or 3% of all ds births. Who knew, right?

Zoo pics soon! 'Til then:

Here's Jack on his first day at home! How excited we were that he was here!

Saturday, October 4, 2008

31 For 21 - #3

Look how early I am today! My ds fact today has more to do with me than Jack. Babies with ds are just that, babies. The dx of ds is so scary, it's easy to forget that this is still just a baby. A baby that will need diapers, and little sleepers, and yummy-smelling baby soap, and lots of love. I knew we would love Jack. There was never any doubt about that. But all the baby-ness kinda took me by surprise, which is really silly. I find myself constantly comparing him to the other 3, and really, there are so many more similarities than differences. Even in the way he looks. All my boys are blonde with blue eyes. Jack gets into stuff and I remember the others doing the same things. As he wobbles around the house, I remember seeing the others wobble like that too (sometimes even in the same outfit - Jack wears lots of Ty's stuff). Yesterday, Jack was wearing a pair of shoes that Andrew and Tyler wore too. And I can't wait to hear Jack say "Mommy". I'll just melt! And right now, Jack is upset because everyone else went outside and he didn't get to, so I'm remembering how the others went from oblivious little baby to toddler who lets you know when something isn't going their way. I guess we're there. Hello 2 year old!

Here's a pic of "Jack in the Box". Another of my sad attempts at humor.

31 For 21 - #2

I don't think I'm gonna make it, but for the record, I'm starting this post BEFORE midnight!

Okay, let's see, a ds fact. There are 3 types of ds, including mosaic and translocation (which I'll discuss later), but Jack has regular ole Trisomy 21. This means he has an extra 21st chromasome in every single cell in his cute little wiggly body. Some people are just convinced that extra chomasome adds cuteness. I may be one of them!

I bought some pants for Jackson the other day, seeing as it's starting to get cooler. One pair of pants is a little pair of Levi's, size 18 mos. I put them on him this morning, and even though they're too long and a bit big in the waist, oh my gosh - too cute! I was so excited seeing him walking around in those tiny jeans. I meant to take a photo but the day went fast and Daddy put his jammies on him before I remembered this evening. So, maybe the next time. Instead, I'll post this:

This is my sweet little pumpkin, after we found out about the hole in his heart, and all of the problems it (they) were causing. We called the oxygen tent his "cake plate". (My sad attempt to cope by using humor.)

And this is a pic of Jack's HUGE amount of hair! I know it may not seem like much but both our other boys were real baldies so we were surprised by how much Jack had!

Thursday, October 2, 2008

I Got a Blog Award!!

Heidi Marie over at henry's mommie gave me an award! How cool is that?! Now, this is just for fun, I won't get to be on the Today Show or anything like that (good thing, I'd flip out!). So there are rules to this award. They are:

1. The winner can (and should really) put the logo on his/her blog.
2. The winner must link to the person from whom they received their award.
3. The winner must nominate at least 7 other blogs for an award.
4. The winner must place links to those blogs on their own blog.
5. The winner must leave a message on the blogs of the people they've nominated.

Now, my only problem with these rules are that I don't read a WHOLE lot of blogs, and the ones that I do are (some of them) the same as the ones already nominated! So let's see who I shall nominate...........

1. Erin at
2. Kim at
3. Kathy at
4. Pam at
5. Amy at
6. RK at
7. and last but not least, my friend Lori, who seems to be having blog issues right now, and will get back to me soon!

So Thank You Heidi Marie! Oh how I can't wait to meet you and your adorable Henry some day!

31 For 21 - #1

Okay so this means 31 blog entries for Trisomy 21 (Down Syndrome).  Yep, I'm already a day behind but in my defense, I fought a migraine all day yesterday and finally gave up and went to bed.  So I'm starting a day late but I'm gonna do my best to make it up.  Hopefully, this will be a learning experience for me as I'm going to try to post a ds fact daily.  Today is an easy one - Down Syndrome is another name for Trisomy 21.  And for a cute Jackson ancedote - one day, after the kids came home from school and greeted and played with Jack, they went downstairs to play.  Jackson was quite miffed that they dared leave him with me, so he went to the stairs and KNOCKED with his little fat fist on the door!  When I opened it, (trying so hard not to fall on the floor laughing) he turned his little self around and crawled right down those steps!!  Was I proud or what?!

Here's a shot of Jack (pre-birth, of course):

And here he is on his original birthday!