Saturday, December 26, 2009

Christmas!

We had a great Christmas! Everyone got a present they liked and we spent the day in jammies, just eating snack food and hanging out. Some of us got new cell phones (me and Andrew), and someone (our resident Guitar Hero expert) got: Someone got a foot massager, which Jack was happy to try out. Then he spent the rest of the day eating cookies: But this is the short video RK has been waiting for! (Sound down, seriously.)
videoDo you think she was surprised, and HAPPY to get her own cell phone?!

Saturday, December 19, 2009

Catch up post

(This is mainly for me - to keep track of what we've been up to, and what still needs to be done before Christmas.)

We had 3 beautiful orchestra recitals. Andrew wasn't very impressed with his; he said they could've done better. But it sounded lovely to those of us in the audience. Tyler's was incredible. The amount of students in orchestra this year is truly astounding. The recital was in the gym and it was absolutely packed! Very different from when it was held in the library! M's was way bigger than ever too. She is really enjoying orchestra lately. I didn't get any pics of any of it. I was just thankful to get everyone where they needed to be when they needed to be there.

Jack was the only kid who had a Christmas party this year (or whatever they're calling it - I refuse to remember and keep calling it a Christmas party). I didn't get to go because I signed up to go on M's orchestra field trip to play at the mall. RK and I bought some snacks (juice, fruit snacks, and festive goldfish crackers) and I sent in tissue paper and Christmas baskets so they could play "throw the snowballs in the basket" game. I heard it went well. He still has 2 days of school so teacher gifts will get sent in this week.

Still have to finish that, finish Christmas cards (and buy stamps), one more gift to take care of for the grandmas and grandpas, wrap presents, purchase food for Christmas eve, day, and the day after, and call AT&T to straighten out a mess I made when I tried to extend our contract and upgrade our phones online. It seemed like a good idea. Oh and pay some bills. Thank goodness for online bill pay!

We're working on the Camaro so Andrew can drive it. Needs a heater core. Wants a new storeo and paint job. But it runs good, and will get him from place to place until it's pretty again. Then it'll get him from place to place in style! And before Christmas comes, my kitchen will have a new look! It has to do with last years' Christmas gift from Al's parents. It's gonna be gorgeous but I'll wait to tell what is happening 'til it's done!

Time to clean off the desk and get crackin. Maybe I can make some progress.

Sunday, December 13, 2009

Perhaps it wasn't a good idea.....

to get Jack a trampoline for his birthday. It's just a little one so I think it will be okay. We have to put it away after he's been jumping for 20 mins or so or else he'd jump 'til he passes out. Maybe he will be able to work up to more time. I hope so. The problem is we found out that Jack has a gap between his skull and his c1 vertabra, a bigger gap than the ped neuro surgeon that we saw last Thurs is comfortable with. A gap that is known as AOI - atlanto-occipital instability. A gap that could potentially have life changing impact on our little man. People have little gaps between bones - that's normal and expected. A gap the size of Jack's between my skull and c1 would be okay. In him, not okay. So we have to restrict some of his wilder activities, no football or roller coasters. No big trampolines. We have to watch his walk, check for pain in his neck, loss of strength in his grip. We'll repeat the xrays in Apr. Please pray the gap will be less. We'll think about what happens if it isn't, then. In the meantime, we watch, we wait, we pray.

(It took me a long time to write, and then post this. I know, in the grand scheme of things, this is not the worst thing ever, nor is it the end of the world. But it's been very hard for me to process. Thankfully, I have good friends (one of whom has beautiful little girls) to distract me. If anyone has any helpful links, please pass them on.)

Friday, December 11, 2009

for Miss L

Jack's new skill! (No sound needed for this one. Sorry it's sideways - I forgot to turn it before I posted and don't know how to fix it!)
video

for Miss C

3 years of hard work, this is for you! (Turn your sound up!)
video

for Miss J

Are you watching?! (Turn your sound up.)
video

Wednesday, November 25, 2009

Ty's birthday

I'll have pics to post later but here's a quick review of our boy. His birthday is always around Thanksgiving which is a good thing and not a good thing. There's always a chance to hang out with family which is the good, but sometimes it's hard to get together with his friends which is the not good. I thought he was our last baby for more than 7 years so yeah, he's probably a little spoiled. He's funny, and silly, and easygoing, and smart. His hair is waaaaaaay too long and he wears the same hoodie every day to school. I wash it as often as possible. He loves Jack without reservation and he's great with little bitty kids. I cannot picture him as an adult yet, I'm too busy trying to get him to finish his homework!

Last night, Tyler had a couple of friends over to go get pizza and spend the night. Our family and our 2 guests went to the Incredible Pizza place. It has bumper cars, bowling, go karts, and lots of games, besides pizza. The food was NOT too good. And then to play the games you have to purchase game time, on a card, like at Dave and Busters. Guess how much I spent? For admission plus games for 5 people, it was just under $130! That's crazy! The kids had fun (even Jack, he ran around like a mad person) but I think that's the last time we'll be doing that. It was NOT worth it. And I saved for months for that. Ty and friends tried to stay up all night (didn't make it) but we had cake, then waffles this morning, and they seem to be having a good time.

So the rest of today will be getting ready for Thanksgiving!! Cleaning, cooking, thinking about shopping! I am thankful for my family, my friends, my house, my hubby who works hard to take care of us, and for today, we're all healthy. What are you thankful for?

Sunday, November 15, 2009

Some of our friends need prayers.......

When Jack was first dx'd with Down syndrome, I wanted information. I searched the internet and came upon a wonderful site, Downsyn.com, that gave me lots of info but more importantly, had an amazing forum with knowledgable and friendly families of people with Ds. I looked at their pictures, I read their stories, and I came to feel we are a family. I talk about the kids and their families like they live next door. My real-life friends are probably sick of hearing about these on-line people! I've been lucky enough to meet some of these families in real life; as a matter of fact Miss Braska and her family have quickly become as important to us as our actual relatives! However, this post is not about us, or Braska and RK.

It is about a little sweet-heart named Polly. One of my new buttons (on the right) is for Polly. She is one of the faces that welcomed me to Downsyn a few years ago. I've gotten to meet her and her family. I have a really cute pic of Polly but Blogger doesn't want to let me add any pics right now. Polly's mom, Gillian, is just as beautiful on the inside as she is on the outside. They need our prayers right now because Polly has been diagnosed with Moyamoya syndrome. This is a quote from a post Gillian wrote, explaining. "The Doctor explained that it had to do with blood vessels in Polly’s brain progressively narrowing, resulting in strokes. The disease worsens with age. And the only way to combat it is brain surgery." Obviously, very scary stuff. If you click here, you can read about Polly and her family.

This post is also about a beautiful little girl named Quinn. She's younger than Jack, so I was able to welcome Quinn's mom to Downsyn after I had been there awhile. Karyn and I have talked through posts and pm's (private messages). Our (Ds) stories are similar. We both found out about our unborn babies having Ds and continuing the pregnancy. Quinn has a wonderful, loving family. Quinn has been diagnosed with IS - Infantile Spasms. Please click here to read the story. The cure seems to be as bad as the illness, but Quinn is a fighter, and I'm praying for a super outcome for her!

Both of these families have found their way into my heart, whether they want to be there or not! Please add them to your prayers, they are my family.

Thursday, November 5, 2009

Post Party Wrap-up

We celebrated Jack's birthday with a little party. Just his grandparents and us. We got a little cake and had lots of fun watching him play. His favorite present was a Little People school bus.

We sat Jack in front of the cake and took a lovely pic. Then, as I turned to grab the video camera, Jack decided to feel the candle flame. Yes, feel it. This is what he looked like after that:


Now go back and click on those photos so you can see it up close. Too cute! Actually, right away he was sad and we cheered him up and this is the face we got when we re-lit the candle. And I am such a good mommy that instead of sitting with him and telling him it's okay and that kind of stuff, I made sure to grab my camera and take pics of this amazing sad face!! But it's okay, he cheered up again and clapped and smiled for the real cake photo:

And then I have to post this one just 'cause it's kinda neat!

Tuesday, November 3, 2009

Halloween '09

It was much more fun than I thought it would be. We'd had so much rain the entire month of Oct. I just KNEW trick-or-treating would get rained out. I was gloriously, wonderfully, wrong. After days and days of rain, Sat morning the beautiful sun came shining out! It was a lovely day, a little cool but who cared?! M organized several of her friends to go trick-or-treating together. They were all going to meet here and go out, then 2 of the girls were going to spend the night but everyone else was going home after. Turned out, 6 girls spent the night here and 2 boys were here until almost midnight! I was getting ready to drive them home myself but one of their mom's came and got them. There was giggling, music, and noise all night. So much fun! Even my big boy got a mask and ran around with his buddies having Halloween fun until late. I still don't have pics of my kids together, but here's a group shot (can you find Jack in there?):


Here's another of Jack-

His favorite thing about trick-or-treat was running down the street away from mom and dad! I need to take a better one before we put all the Halloween stuff away. Can you tell what he was? Let's see, there was a beanstalk on his stroller. More on that later.

It's Been Crazy

I have a lot to catch up on. Jack and I have been through a bunch of changes in the past couple of weeks. You know about our therapists. It hasn't quite sunk in yet, just feels like we're having a couple of weeks off.
We went to the punkin patch for Halloween pumpkins that weekend. I got a pretty good pic of all the kids together, even though we'd had so much rain. It was a less than fun trip unfortunately.

We had a class Halloween party last Mon. The kids in the 2 yr old class are so sweet. That was Jack's last time in that class.

The next day was Jack's 3rd birthday! I took him to get official photos taken, but here's our new Jack's birthday tradition photo with Jack's girly friend Braska!

(I don't know what is up with the date on my camera. I keep fixing it and it keeps getting messed up.)
We didn't do much as a family to celebrate. After pics, we met with Braska and her sister and mommy and had lunch at our house, let the kids play a bit, then everyone went home and had naps. That night, nothing. No cake, no presents. We planned a party for the weekend and figured Jack wouldn't know the difference. So other than extra hugs and "Happy Birthday!"'s, nothing. I'm feeling a little bad about that.

Friday, October 30, 2009

31 For 21 - #21

I knew I wouldn't make it. I had big plans, post ideas in my head, things I wanted to share and opinions on. But here it is, the 30th, and I'm only on post #21. Not so great.

My thought for this post is (once again) the impact Jackson has had on our friends or acquaintances. It is constantly weird to me how many people just chat with Jack. He smiles, and waves, and "pounds it" (knuckle bump) with perfect strangers. We've never gotten a rude comment or stare that I'm aware of. It's really fun to go places with him and watch him.

Jack's birthday was on the 27th. We didn't do any celebrating that day - we'll have a little party this weekend. Lots more to come on that!

Saturday, October 24, 2009

31 For 21 - #20 - IEP

2 weeks ago we had a meeting called the EDM (Eligibility Determination Meeting). At this point, the school district transition coordinator, myself, and several people who will be involved in the next step of Jack's education were there (including special ed. teacher, therapy coordinators, and therapy providers.) Jack had already had several evaluation appointments, so we went over the results at this meeting, and be officially declared eligible for services from ages 3-5 (gee it was such a shock - not!). I don't think I learned anything new, after all the subject, Jackson, lives here! They give you results based on some sort of chart, and give your kid's developmental age, based on typical kid development. I don't neccesarily think it's all that accurate, since EVERY child develops at their own pace, but I took it as it's intended, just a guideline. These are just numbers, they don't tell anyone about how your kid can climb up on the bathroom sink and completely empty the medicine cabinet (which has no medicine in it!) in the amount of time it takes to pour yourself a glass of tea. Some families are disappointed in the numbers, but like I said, it doesn't really tell you anything. As an example, Jack, who runs and plays and climb up on stuff and gets into cabinets and opens and shuts doors, got 15 months for physical development (motor skills). I actually laughed when I saw it. Is it accurate? Maybe, maybe not. But whatever.

So we got all the results and were told that Jack will get services. At that time, we were not officially told what type of sevices, duration (school times and therapy amount), or where he would be placed. We did have a little preview, since someone at school was nice enough to prepare us a bit. Officially, all this was to be told to us at the next meeting, the IEP(Individualized Education Program). Apparently, all of this is commonly done at one big meeting, but since the IEP includes goals written for the child's upcoming school year, I wanted a bit of time to make sure I understood what was said before the goal writing part. I wanted to make sure I didn't forget any questions I had. Everyone was very nice, but our district person would sometimes talk and then later on I had no idea what she meant. I think it's because she speaks quickly and takes shortcuts that I wasn't familiar with. So I needed extra time. Next post - the IEP.

Friday, October 23, 2009

31 For 21 - #19

Well, Miss J just left. Jack's speech therapist. I didn't cry in front of her either. I got all their addresses so when we get Jack's 3 yr old pic taken I can send them one. (And of course christams cards!) It's going to be so weird having no one come to the house. No one to show Jack stuff to. No one to cheer his accomplishments here at the house with. I know he'll go to school and the teachers and therapists there will see him and let me know what he's doing but it won't be the same. I'm going to miss them. Have I mentioned how I hate change?

Thursday, October 22, 2009

31 for 21 - #18

"We're catching up!" (Said with a pirate-y type accent. One of my favorite lines from Pirates - Curse of the Black Pearl

Pirates came out the summer of '05. My family loved it. I REALLY loved it. Got it on DVD for Christmas that year and watched it every day when the kids were in school. If I didn't have enough time for the whole movie, I could watch all the important parts, fast forwarding, in just under 45 minutes. Captain Jack Sparrow was my favorite character EVER!

So when we found out we were having a baby, the first thing I thought of was "if it's a boy, we'll call him Jack!". Several months later, we had a Jack. I thought the name worked because 1. I loved it and 2. our baby needed a strong name because of everything he would have to deal with because of having Ds. JACK is a short, firm name. It has a playful side too. And we actually named him Jackson, which has a little more formal feel to it. (Plus it reminds me of Johnny Depp - yum!)

31 For 21 - #17

Yesterday was our last day to see Miss L, Jack's PT. She came in with a sad lip and I had to tell her "oh no, don't start! I'll cry!". I managed to not cry 'til she left. She gave Jack big hugs and was gone :(. What am I gonna do without these gals?!

Tuesday, October 20, 2009

31 For 21 - #16

Heeeeeeere's hat boy!! (These first 2 are why we usually help Jack put on his hat!)



And this one needed assistance because it was so darn heavy!

31 For 21 - #15

It was as bad as I thought it would be. Saying goodbye to Miss C, Jack's OT for the past almost 3 years. She gave us wonderful advice and encouragement. She cheered for all of Jack's accomplishments along with us. She enjoyed him and his silly antics. I will soooo miss her.

Tomorrow we say goodbye to our PT friend. Oh lord, help me.

31 For 21 - #14

This is our last week of EI therapy. I have been putting off thinking about that. I'm guessing I'll be okay the first week, slightly nervous the second week, and really sad the third week. I wonder what Jack will think when he doesn't see his therapist friends anymore. Will he notice? Will he miss them? Will he be sad? He'll be starting preschool in Nov so maybe he'll be so busy with that it won't be such a big deal for him. I'll miss their advice, and really, they are the ones who know Jack best, besides me and Allan. I will miss sharing milestones with them, and stories about Jack's adventures. They are a big part of this extended family we joined when Jack was born. Our therapists are more a part of our lives than any of our siblings. It's true. I hope they know how much we appreciate them, and will miss them.

31 For 21 - #13

I'm at a loss. I had so many ideas at first, but they've all fizzled down to squat. So today I'm going to post my to-do list in hopes I will get something done.
(In no particular order)
1. clear off kitchen counters
2. sort papers in LR and file keepers
3. go through papers in hallway (don't ask) and put away or recycle
4. clean my room (it's not bad, just needs dusting, etc.)
5. finsh cleaning out Jack's room and take outgrown clothes to OUAC
6. basement (blech!)
7. catch up on laundry (is that really possible?)
8. plan a birthday party for you-know-who!

I have hope people. I could get all these things done, it's just all the day-to-day stuff that causes delays. Plus all these people I live with really don't help at all! Maybe I should add #9 - create a chore chart and stick to it!

Sunday, October 18, 2009

31 For 21 - #12

So not only is Oct Down syndrome awareness month, but it's also the month of Jack's birth. As his day approaches, I keep thinking about what was going on in my head just before his birth. I wasn't ready, I know that. Physically, I felt okay. Gestational diabetes turned out to be a blessing. I was taking better care of myself than I did before, and since! (That's interesting, why am I not pregnant not worth the care I took of myself when pregnant? I know, it was all for the baby but still.........) Mentally, I was worried, excited, nervous, happy, and of course, stressed. I was concerned for this new little person, worried about my other kids and hoping I'd be able to juggle everybody's needs. Allan and I were still functioning as a team, but we were each dealing with our concerns mostly on our own. I think neither of us wanted to overwhelm the other. Here's a pic we took the weekend of my super baby shower. That was a great weekend, I hadn't laughed so hard in such a long time. Sorry for the rambling thoughts. Maybe I'll be more coherant later. (Hard to believe there's only ONE baby in there!)

Thursday, October 15, 2009

31 For 21 - #11

I've started keeping binders. It seems to be a good way to keep papers sorted and together. I have one for Jack's first 3 years of EI. Since we're in the midst of the IEP process, I started another one for his years at pre-school. I try to keep it up to date but sometimes that means putting the papers in there and then punching holes later. I got the kind that you can slide a cover sheet in so I bought some fun paper and put pics of Jack on there and his name in fun letters. I put everything in there just in chronological order. I keep thinking there might be a better way to do it without getting too over the top because if it's too complicated I won't do it! We'll see if I can keep it up. I also have binders for Mary Kay (if you need anything, even a catalog, let me know!), one for the other 3 kids, one for my DSA info, and I started one for medical stuff but started putting that stuff in the main Jack binder. It seems to be working well.

I need a day here in the house to sort papers and fold laundry and clean floors and throw stuff away! A day without ANYONE else here! Even with Jack's nap during the day, I get nothing done most days. What can I do with my family? Hmm, send them to the zoo? If the weather were at all decent here that might work! It's too darn cold!

Wednesday, October 14, 2009

31 for 21 - #10

Random images post! Jack is a little boy with a lot of personality and a family who loves him very much. Very typical for us, maybe not so much for those with outdated, preconceived notions of how Ds is.

We LOVE "Deadliest Catch", the Discovery Channel show about crab fishing in the Bering Sea. We found out one of our favorite captains has his own line of fish entrees! I bought it because I couldn't stop laughing about it and made the kids get their pic taken with the box!


Ninja baby? Or just a silly boy who can make a HUGE mess?


Jack loves lights so he was happy about our Halloween entry table!

Tuesday, October 13, 2009

31 For 21 - #9

I am sooo far behind! I'm still going to try to get 31 posts in but obviously I'll be doubling up most days.

I wanted to mention Jack's school. It's a preschool class of 2 year olds who are in the First Steps program (Birth to 3 here in MO). They go once a week for 2 hours. Jack seems to enjoy it. They sing songs, do craft projects, eat snack, and learn to sit in a circle and go to the playground with their little friends. There is one teacher and 2 helpers. They all seem super nice and I like them all. The best part is that Jack gets to go with Braska. The last time he went, there was only 4 kids in class! Flu, or some kind of illness kept them all home.

This is the same building he'll go to actual preschool in, starting after his birthday. We're in a great district with this terrific school. He'll be in class with typical kids and other kids with sn. More on that after our IEP meeting in a couple of weeks. (I didn't change my mind about not wanting him to go - I just know it's a great place.) I'll take a pic of him outside of it before the weather gets even crappier than it is now!

Sunday, October 11, 2009

31 For 21 - #8

Down Syndrome in itself does not suck. Some of the crap that comes with it does. What is bugging me today? My 3 yr old going to preschool. We had our eligibility meeting last week. Of course, nothing is for sure yet, but it's quite possible Jack will go to school most of the week. So we have to be somewhere most mornings, we'll get home in time for lunch and nap, so I'll only get a few hours to hang with my baby, less time for errands and activities, less time for hugs and kisses. Plus he'll come home all smelly. I don't care how clean the building is, school doesn't smell good. Yeah, yeah, it's all for his benefit, blah, blah, blah. I know that or he wouldn't be going. But that doesn't mean I have to like it, be happy about it, or not bitch about it on my very own blog. (Nor does it mean he HAS to go EVERY time - ha!)

Wednesday, October 7, 2009

31 For 21 - #7

Lots of parents who have kids with Ds say they don't "see" the Ds. Their children are their children and when we're busy with the day-to-day stuff (school, therapy, dinner, baths, playtime) the Ds really does take a backseat. It does for us. We just go about our business and enjoy Jack (or not!) just like the other kids. But, I see the Ds every time I look at him. It's the eyes. And I'm so used to it, even though I do "see" it, sometimes I'm still surprised by it. I know, that doesn't make much sense. But the other day Jack was playing so sweetly and I was enjoying watching him, and I just thought again, "wow, that cute little boy with Ds is mine". And I had to make myself keep sitting there, so I wouldn't run over and give him a big giant squishy hug! How I love this boy!

Tuesday, October 6, 2009

31 For 21 - #6

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!)

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!

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!

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!

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.

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!

Wednesday, September 30, 2009

Oh No!

My life is about to change, and not neccessarily for the better! Jackson has learned to turn doorknobs. I noticed the other day when I was in the bathroom, trying to have a moment for myself, and he came in. At first I thought I was mistaken and hadn't shut the door all the way. But no, then he shut the door (a favorite activity) and then OPENED the door. Today (oh joy) he opened the FRONT DOOR! eeeeeeek! So now, we have to be extra vigilant about locks on doors. If he learns to unlock.............oh boy. All prayers will be gratefully accepted.

Sunday, September 27, 2009

Holy Cow He Did it Again!

Bit his tongue hard enough to make it bleed and leave a mark! This time it wasn't near as bad but I couldn't believe it! The older kids did NOT prepare me for this! Jack was getting a bath and I kept telling him to sit (doesn't everyone have to do this?) because he kept standing up. Sure enough he fell right into the side of the tub and cried and cried. He put his little hand up to his face and when he took it away there was blood. I thought to myself "no way" but yep, I saw the mark on his tongue later on when he was being silly. What the heck?! I guess it could be broken bones so I am grateful it's not worse. But sheesh.

In other news.........

My mom was here for a visit. She stayed 4 1/2 days and 4 nights. I think I have gained 10 pounds. Again, SHEESH.

Tuesday, September 15, 2009

IEPs

I admit, this stuff has me bamboozled. And for some reason, I do not "get" our district person. She seems nice enough, it's just that we talk, and I say "okay" and then I go home and say to myself "huh? what just happened there?". This is driving me crazy. I am an educated, intelligent person. I was the Regional Manager of a World-Wide Environmental Consulting Agency for cryin' out loud! I haven't stressed too much about the whole process because I feel familiar with the district and know parents who have been through IEPs and lived. So why am I having issues? Because I don't want him to go? (Well duh, of course I don't.) I'm going to write an e-mail to this lady tomorrow and try to get a few questions cleared up. Wish me luck!

Saturday, September 12, 2009

One of Cap'n Jack's Adventures

This is one of our adventures that I waited to post until I had the pics downloaded from my very crappy cell phone. So I apologize for the quality of the pics but I hope the story is funny enough to make up for it.

A few weeks ago, my friend Jenny took Jack and I to lunch at Joe's Crab Shack. I'd never been there. The decor was neat, real "fish shack" kinda stuff. When we went, it wasn't crowded so there was plenty of tables available. We were seated, and started looking through the menu. Jack began to act funny, as in unusually unhappy, wanting me to hold him. I gave him some Cheerios - no. Crayons - no. Finally I moved his chair close to mine and he grabbed onto me for dear life! I was thinking, what the heck?! Is he sick? No symptoms. So I started looking around to see if something might be bothering him. Guess what I saw?


See the table directly below this guy? That was us! So we frantically waved the waiter over and asked to move. We picked a seat as far from this guy as possible, under some cute little birds. The change was amazing! As soon as we sat again, Jack looked around and very carefully, peeked upwards. All was good! He boogied a little to the music, pounded knuckles with the waiter, signed "bird" several times, and snacked on some Cheerios while waiting for our food. The waiter got quite a kick out of cheerful Jackson, and told me several times how cute Jack was. After we finished, the waiter came over and asked (very mysteriously) if he could give Jack a little surprise. So I said sure and the waiter sat these down in front of him:


Cute, huh? A little shark! And a little crawdad! Jack was pretty tickled and even made great friends with the shark!



Jack fell asleep in the van on the way home, holding onto his new little friend! It was very sweet. I should take a decent photo of Jack with his shark buddy. Maybe later.

Tuesday, September 8, 2009

Tongue Pic!

It actually looks pretty good in this one! On Thurs, it was really red and angry looking. It's healing up well. Thanks for all your good wishes!

Sunday, September 6, 2009

Head Injury (ies)

Head injury #1 - Andrew got clocked at practice. Yep, practice. No concussion says the trainor but his head hurts every time he runs or anything. So he's been recovering since Wed. Hopefully, he will get to play again by the end of the week.

Head injury #2 - We got to meet some on-line friends (more on that later). During the visit, Jack got a sweet hug from our buddy Braska. The problem was both of them went tumbling down the hill in the course of the hug (there was no bucket of water involved. You know - Jack 'n Jill went up the hill, blah, blah, blah?). You could see the panic as they went over. They took out a small pretty shrub and landed on some lovely purple flowers. Both of them were less than happy at this point. But after some hugs from mommies and reassurances that all was well, they recovered and went to play quite nicely. Later on, Jack decided to try to run at me, but I was on the other side of some very sturdy patio chairs, and he smacked into a chair instead. When I picked him up, there was blood. Not a bunch at first, but the volume picked up really quickly. So I wrestled him onto the floor and pried his little mouth open to see where it was coming from - no loose teeth, no bit lip, no discernible tongue injury, hmmmm. Blood all over him, a little on me, but no apparent injury. Curious. So we got him cleaned up and cheered up, and decided to head for home before someone broke a leg! That night Tyler got Jack to stick his tongue out by sticking his out at Jack first, and we saw it. The wound. A big, gaping, jagged cut toward the center of his poor little tongue, made by some sharp upper teeth. When Jack sticks his tongue out flat it just looks like a jagged cut. If he rolls his tongue a bit, you can see it gap open and wow, is that yucky! You can almost but not quite fit a pencil eraser in it. At first he wouldn't eat much, but by Sat he was eating pretty normally. Our nurse neighbor says they wouldn't stitch it because mouths are dirty and they wouldn't want to trap germs in it, so keep an eye on it to make sure it doesn't start looking worse, or interferring with his breathing, or if he stops eating. There's little to no chance of getting a pic of it, but I'll keep trying! Just what you want to see, right?!

So keep good thoughts for the recovery of my boys! Andrew will be heart broken if football is over for him already.

Tuesday, September 1, 2009

Football, football, football

Hey, guess what season it is! That's right. The Warriors are on the field! And we have beautiful new astroturf for the guys to play on this year. I walked on it and it's actually pretty soft. Andrew says it's like falling into a pillow (which cracks me up 'cause he's getting down there in such a violent manner!). He's playing right tackle this year for the Varsity team, and right or left tackle or guard for the JV team. He's one of the guys that the coaches asked to play down as well as play on Varsity. He had already told me that all the offensive line are returning starters so he was bummed he wouldn't get to play as much, then he called and said he'd be playing JV as well so I'm pretty happy about it. We'll see how happy he is playing 2 games a week! Pics soon!

Sunday, August 16, 2009

they went back to school :(

I was NOT ready! But all the forms were filled out, the school supplies bought, and we were all up so I figured, might as well send 'em! Getting back into a routine that involves getting up in the morning and me running around hauling kids places is not my idea of fun. You parents of kids who do more than one sport apiece get plenty of applause from me! One is hard enough for me to keep track of.

We had to do first day pics in 2 shifts! Well, not really because Jack didn't go but he was awake when the middle 2 were going so he got in the shot!

Here's the JUNIOR in high school (how the he*% did that happen!), the 8th grader, and the 5th grader. Ty changed schools this year so it was a BIIIIIIG day for him.


And here's the younger 2 ready to walk out the door (and the little guy with his blankie buddy!).

Sunday, August 9, 2009

Finally, Pics!

Here's the littlest Warrior fan, gettin' ready for football!


We got to meet some new friends the other day. Ria and Matthew met us and RK and girls for lunch. Here's Braska (we were boring her, I think!) and Jack and Matthew.


On our trip to AR and TX a few weeks ago, we stopped and hung out with Janice and Chase. They moved away a few years ago.


Madelyn and Chase were really good buddies way back in 1st and 2nd grade. I think they had a good time catching up.


When we got to TX, the kids settled in like we lived there! They played together, hung out together, acted like it hadn't been 2 years since we saw them last.


I got to go on ONE sight-seeing trek - do you all remember this house?!


This is funny - When Sherry was showing us the house and I was checking out the pantry, Gracie looks up and says "there's my happy snacks!". When I figured out what she meant, I about fell on the floor laughing! Here's Gracie with her "happy snacks"!


This is all the cuties together (except for my Andrew): Jack, Gracie, James, Tyler, and Madelyn. We had a great time. Love you Sherry! (Why did we not get a pic of you and I together??? Sheesh....)

All About Me

So this post is to let me vent a bit. I'm bummed. I'm old (found another gray hair today), my weight is crazy (like 50 lbs need to go), and I'm tired. Everything seems to take too much energy. I keep thinking my hormones must have something to do with it so yeah, when I can talk myself into it, I'll go to the dr. My house is a wreck and I'm tired of money issues. I have a friend that I truly love, but I needed a break from the drama coming from her. That isn't going well either. I haven't dealt well with the last couple of holidays - no special decorations or food and that isn't like me either. I have pictures I'd like to post but can't seem to find the energy to get them on the computer. Do you see where this is going? I'm a mess.

The kids start school this week which always bums me out. So wish me luck, willya?

Thursday, July 30, 2009

Time to Celebrate!

Yay! Turn up the music! Break out the bubbly! What else? Oh yeah, those rolled up appetizers! Get some of those!

Why? Oh that's right, you don't live here. Well, even if you did, you might not care (like the rest of my family). This year, we have 4 children in 4 different schools. Every stinkin' one of those schools wants me to fill out many, MANY forms. We've been in this district 11 years. Can't I just stamp "SAME AS EVERY YEAR" on them and be done with it?! I've been working on them for the past few days and thought I'd never get done. But I am! (Yes RK, even the stuff for US and Jack's transition!) Woo Hoo! Now I just need to drop everything off tomorrow, buy some notebooks and loose leaf paper, and we're ready for school! Yay! Drat :( They really have to go back. We love summer, and staying up late, and no schedules, and doing whatever we want. So it's a bittersweet celebration. I asked my 16 yr old what he'd like to do tomorrow, and his answer was "sleep, laze about, maybe some dawdling, and procrastination is on the list that maybe I'll make tomorrow". Man I love that kid!

Sunday, July 26, 2009

Crazy Summer

We've done a lot of stuff this summer. It surprizes me when I think about it. We have less money than usual this year, and yet we've managed to do lots of fun things. I logged on to post about our latest adventure when I started thinking about it. We've managed to do things without spending much, and now I'm monitoring myself pretty closely as far as expenditures. Everyone is having money issues these days, it's time for me to start taking spending seriously. Maybe we can manage a debt-free Christmas this year!

Last week I took the younger 3 kids to Texas! The first night we stopped in Arkansas to visit some friends that moved there a few years ago. Haven't seem them since. It was really a wonderful visit. I missed you Janice! I hope we can do it again soon.

The next few days we stayed with one of my closest friends from college. They moved to TX a couple years ago and man, I miss her and her family. I truly love her kids and it was so great to get hugs from them when we pulled up! The little one was only 2 the last time I saw her. I took pics I will post.

Jack shared in all these adventures, just like any of the other kids. I shared some messages with a friend from a ds forum a while back - about how it surprises some to know that our kids are just kids, and can participate in our family life just like "typical" kids. She had just gotten back from a water park with her little ds angel. My hubby is a laid-back, no stress kind of guy, so when we got the news about Jack's ds (sorry if I've told this before), his response was "whatever, as long as he goes camping with us". I guess I never thought about him not doing whatever it is the rest of us do. I worried about him getting teased when he got older, or having a job he loves, or what would happen when dh and I die. Mostly I don't worry about that stuff anymore (no more than I do for the others anyway!) I see my Cap'n Jack growing and learning, having friends, and enjoying his family. I'll worry about the other stuff later.

Sunday, July 12, 2009

2 rafts, 1 kayak, and 11 canoes



That is what it takes to get 14 adults, 18 kids, and 2 dogs down an 8 mile stretch of river on a float trip. It also takes 5 hours (when there are LOTS of stops involved). That has got to be one of the funnest things we do as a family. Family, meaning my hubby's sisters and brother and a couple of special friends. All the kids absolutely LOVE it. This is the 2nd year that we've all gone together, and I hope we continue to go every year.

My nephews Nick and Grant, and my Ty.

My M, SIL Donna, and niece Sydney.

My Andrew, in the canoe that sported his football number (not the 17!).

And here's Cap'n Jack, making faces at me as he sits upon his royal Barbie throne (borrowed from the lovely Sydney - don't worry, we didn't point out the Barbie to him!)

This is some of the group the next day. We picked a great spot on the river, to watch that day's floaters as they went past.

More pics tomorrow!

Amusement Park Fun

Yep, we went to Six Flags.

It was hot.

We did what we could to stay cool.

The drive there wasn't too bad.