Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, February 28, 2011

Surgery Date

For those who have Axel on their prayer list, Axel will be admitted to Shriner's Children's hospital on May 15th, and his surgery will be the following day on May 16th.

I was so looking forward to this summer. Taking Axel to the beach that is right across the road. Doing Special Olympics with him, and a bazillion other things he's never gotten to do, but will instead have to sometimes watch Angela do. That, and it's going to be a long hot summer with the halo on, and the lambs will vest that goes underneath it and NEVER comes off.

One week from today he has his oral surgery to get his poor, miserable mouth taken care of. He's going to feel so much better.

Note to Self

Note to Self:


It is crucial to tell Axel which part of the meal is edible and which is not.


Angela had an orthodontist appointment this morning, and didn't eat much breakfast before we left. I knew that she wouldn't make it to her school lunch hour so I swung into McDonald's to get her a hashbrown and orange juice. (and yes, I'm well aware they have no nutritional value.)

I got one for her, and handed one back to Axel. I showed him how to hold it in the little paper envelope thingy since it was still hot and...well...they're quite greasy.

A couple minutes later I can see in my mirror that he's eaten about half of it so I reached back and told him to hand it to me. I wanted to pull it out of the paper some more since he will practically eat his finger tips before moving them out of the way of his teeth! I bring his hashbrown in front of me and look down.

He has eaten about 1/2 of the paper envelope thingy along with the hashbrown.

Seriously?

Surely he has eaten enough McDonalds by now to know to remove the paper? Well, thankfully he has NOT eaten that much McDonalds, so no, he didn't know.

Should I be concerned about the paper? I mean, they put it over food, surely it's not treated with THAT many chemicals or dyes, is it. Never mind, we eat taco bell, he'll be just fine.

From now on I will be sure to tell him to not eat the paper, or the styrofoam, or whatever other types of packaging comes on fast food.

Sunday, February 27, 2011

Missing Her

Last night we let Axel go to the basement to let the dogs in. He feels quite proud of himself, being trusted to do this job. I went along with him to show him how to work the latch on the door...again.

He hollered for the dogs to come in, "Hey! GLandnoayayahabahhadaofeiahfkdajn!" and they came running, in the same order they ALWAYS do.

First Dudley...

then Roman...

then Zurri.

Axel hollered out the door again. "Hey! Glolgkakcndknke!"

He was hollering for Rubee to come. She ALWAYS came in last, no matter what.

But there was no Rubee, and Axel was confused.

"Rubee's not coming Buddy. I'm sorry."

I turned to wipe away the tear that was already running down my cheek. They're awfully close to the surface these last couple of days.

Tonight the dogs ate their dinner then did their face cleaning ritual. This involves lots of rubbing of faces on the rug or using their paws to rub their snouts. Prior to Friday, this ritual also involved Zurri making serious business about cleaning off Rubee's face. Zurri would clean Rubee's eyes, mouth and in her ears. Tonight I noticed Dudley's face was all wet. Apparently Zurri has turned her attention on Dudley now.

Rubee lays on a certain spot on our living room rug. Rubee isn't there anymore, and it just doesn't seem right. This morning when I got up, Rubee wasn't standing there waiting for me to say hello.

Dudley is laying in her spot tonight. Does he miss his mom?

On Friday morning, all three of the other dogs went over to Rubee and sniffed her all over. They sniffed every inch of her.

They knew.

Rubee didn't really want to get up, and was reluctant to go outside with Dean, and the other dogs watched while she struggled to get up. Later in the day, when it was time to take the drive over to the vet's office, I gathered the other dogs to say goodbye to Rubee.

They ignored her.

It was if they were saying, "We said goodbye to her this morning." They acted as if she wasn't there. I think perhaps she wasn't.

It has been many years since I've had to put a dog to sleep. And actually, I don't think I stayed in the room. It was a dog we'd taken as a rescue and only had a couple of weeks, so I wasn't very attached to her yet, AND she'd just killed 10 of my chickens three days before she developed pyometra. Bringing Rubee to the vet was the most awful feeling. What if we were doing the wrong thing? What if there were some simple fix we were missing? How could we take our Rubee and make her walk into the vet on her own...to her own death?

She even wagged her tail at the vet.

It was a slow, tired wag.

Rubee hated the vets office. She was always very nervous there and would tremble. Not this time. This time she laid down on the bed they'd made for her, in exactly the same position she lies in at home. She was relaxed and seemed comfortable. She didn't flinch when the techs shaved a spot on her leg and put in the IV catheter.

I kept staring at that IV line. That was where we would inject it. The fluorescent blue chemical that would make her heart stop. I couldn't believe we were doing this to our Rubee.

Our Rubee.

As we were saying our very last final goodbye through sobbing tears, Rubee picked her head up off the floor and looked first at me, then at Dean.

She said, "goodbye.

I'm tired now.

Goodbye."

We told the vet we were ready, even though we weren't. We would never be ready. As the vet started to inject the blue stuff I wanted to yell, "Wait! Not yet! I can't say goodbye!"

We told her we loved her. That Fae was waiting for her. And Othello. There were trails to walk where she was going, and mice to sniff out. We would see her again one day. Dean. Me. Angela. Axel. Dudley. Zurri and Roman. We would all see her again one day.

We miss you Rubee. So many memories we have of you. Leading our pack. Your pack. You loved us and took care of us. I can't wait for the day when you'll greet me again, with your slow, happy tail wagging. You will forever be "Our Rubee".

Favorite Spots

Angela and Axel both have favorite spots in the house. When they have the opportunity to play on their own, this is where they go.

Axel hangs out in his room, in this corner, and gathers all his favorite possessions around him. He has entire room to play in, but he likes THIS corner. I think because it faces the door and he has that nice warm vent behind him. LOL

He loves the books he has tucked under his arm! Thanks to my friend from high school, Kim, for sending them to him.



I don't know if Axel had ever seen Duplos before, but man does he love them! He will play with these for HOURS! Making towers, hammers, and has started trying his skills at vehicles. Looking at this picture, I realize he has picked out all of one type of block to use for whatever he's building this time.

But these are his "room" things. When he's hanging out with the rest of us he carries different things with him. If he wants to move to a different room, or a different place to sit, he gathers all his items up in his arms (he usually has anywhere from 3-6 things) and brings them along. This is sometimes a pain in the neck when you're waiting for him. He will keep this set of items for several days, then one day he comes out in the morning with a new set. It's funny to see what he likes to carry around.

Angela's favorite place to hang out is the basement family room, where the TV is permanently set to the Disney channel and pretty much nobody bothers her. Here she can dance and re-enact her favorite shows at top volume without disturbing anyone. Also, this is where all the invisible people hang out, since they're not allowed upstairs anymore. Does anyone else have a rule in their house like, "No invisible people allowed upstairs."?

Angela loves to stand on the fireplace hearth (which is about 18 inches high) and hold "concerts". We really need to get her a karaoke machine.

Axel hasn't been allowed in the basement much unless we're with him. His play can get out of hand pretty quickly, and sometimes Angela can be a bit rough and tumble. Since his spinal cord is so vulnerable right now he's just better off upstairs. But sometimes if I'm going to be down there doing laundry or something, I'll let him hang out with Angela. She's not always willing to have a visitor since he doesn't understand that she has assigned him a role in whatever script she has running through her head, which means he doesn't say the right lines at the right time. She tries to be a patient director.

Tonight they were making a music video. I think. There was music going, and they were both dancing.

When I asked what they were doing, I got the exasperated, "Moooom!" and she fell on the bed in a fit of laughter because I am so clueless.

But since the paparazzi had shown up with a camera, she was willing to pose for a couple shots.

Saturday, February 26, 2011

Networking and Voting

Are you a network blogger? If you are, would you consider rating my blog? It's not a voting thing, just a one-time rating.

The About.com reader's choice voting ends in a few days. It's pretty clear by the current results who the favorite is, since I am well over 1,000 votes behind. LOL The only way I could even come close is if all my followers got 15 people to vote as well. And did so several days in a row. ROFL If anyone did still want to vote, you can go here to do so. 

Its still a fun, friendly little contest and fun to watch the votes go up...or not.  If you haven't taken a look at the other blogs please do. There are some great writers in the running and I'm enjoying reading their blogs and getting to "know" them.

Our Mornings

This post started out really negative, so I deleted everything and started over. I'm not trying to hide the negative, I just want to emphasize the positive because I'm pretty sure the negative is all in my head, pretty much. Don't worry though, I'm still going to post it, just separately. I'll give it an appropriate title too. Something like "whine-fest 2011".

We have a pretty good routine going around here. Axel really is a very easy going kid, and is not stuck on routines unlike a certain princess girl I know, who's name might also start with "A" and end with "a".

Here's what it looks like:

6:30 a.m. Wake up Axel. Make sure he is standing up while I get his clothes out for the day (this thing about my choosing his clothes is changing soon, I just have to get up the ambition to follow through with what's in my head.) Send him to the bathroom.

6:45: Wake up Angela. make sure she is talking to me before I leave the room. She makes her bed, gets dressed, etc.

6:50: tell Axel to get off the toilet.

No, really he's been sitting there for 15 minutes now because most of the time he won't get off the toilet until someone tells him to. Sometimes, during the day when I'm not pressed for time, I will just leave him there until he figures it out for himself. This whole thing about teaching him to be an independent thinker is a true test of my patience.

6:51: Axel is back in his room getting dressed. I  head to the kitchen to get Angela's meds set out and breakfast on the table.

6:55: Angela arrives upstairs for breakfast. She sits at the table and I do her hair. She uses this time to give me 5,000 details about her day ahead, including weather it's a blue or green day (which determines which classes she has) and weather or not so-and-so got all  his/her reward squares at school so they can have another room party. She also wants to know the schedule for the next 37 days.

7:00: I hear "Baba!" from Axel's room. I know he's standing in there signing "help please button" for someone to button his pants. He then starts walking to the kitchen table.

7:05: It is a long walk from Axel's bedroom to the kitchen, because he has just joined us in there.

7:08 Axel sits on a chair.

*note* Some days it takes too long for Axel to actually make it to the kitchen. On those days I have him eat after we drop Angela off at school. 7:08  is the LATEST he can start eating because he has to be done by 7:25. Let's assume he  has actually made it to the table on this day, shall we?

7:10: Angela is done eating her breakfast and is off to brush her teeth.

I have stopped reminding Axel to take bites during this time. Instead I set his timer to go off when it's time to be done eating.

7:15 Angela has a couple of minutes to watch TV or play with the iPad. Sometimes she has a book to read to me while I'm not telling Axel to keep eating. Sometimes I can squeeze a shower in at this time.

7:25: In the winter, start the car so it warms up. Send Axel to get his shoes/coat on. I used to have to send him at 7:20 but now that he can zip his own jacket he's moving a little faster. Why is that faster? Because he's not standing there for 5 minutes waiting for me to notice that he needs help (which isn't really what was happening. I was waiting for him to ASK for help!)

7:30: Send Angela to get her stuff on to leave. She's still telling me about her day, and tomorrow, and the next 37 days.

7:35 Out the door to drop Angela off at school.

7:50 We are back at  home. If Axel didn't get to eat before we left, now is when he eats. If he did make it to the table on time, now is when he makes his bed and stuff, which he does with NO help at all. He has some great skills where this is concerned, and I'm considering paying him to teach Angela.

Next post: "Our Days", also known as "Whine-fest 2011"

Friday, February 25, 2011

Progress to Date with video!

Have I mentioned that Axel is a sponge? I cannot believe how fast he is learning. He now recognizes all of the alphabet, and numbers 0-9. He can count up to 10 objects, and is now starting to count objects he sees in magazines or books. Like yesterday at the vets office, he was looking at a magazine picture of several kittens lined up and he counted them. On his own. Unprompted. That is a huge developmental step. You know, the fact that he not only understands the concept, but he WANTS to do it. LOL

He's mastered writing his first name, so we'll give him a couple of weeks with that before we add his last name.

I have debated for several weeks as to weather or not I would use Cued Speech with Axel. He has the motor ability to do it, I just wasn't sure  how to go about introducing it. With Angela we just did it as we talked, but I wanted to use it for Axel with reading, and really separate it from his ASL usage which he is doing so well with. There is also the possibility of his speech benefitting from the use of CS as well. I am NOT a speech pathologist though, so my lessons in articulation are rudimentary at best. One thing is for sure, focusing on the cues will make Axel aware there he has to do different things with his mouth, especially his tongue!

Anyway, we started the Headsprout Reading Program and I realized it was a GREAT way to introduce CS! So far he has learned to cue AND say the sounds /v/, /ee/, /s/, /n/, and the words "see" and "an". The fact that he's saying them is HUGE, because it was really a struggle to get him to make a /v/ sound using his teeth. The /n/ is still coming.

Here's where I'm struggling. I'm almost sure that Axel has Verbal Apraxia. (well, I was also sure he had auditory neurapathy, so...whatever. LOL) It is hard for me to STOP focusing on what he's doing with his mouth and just focus on the cues, just like I would with a student who is deaf or hard of hearing. With Cued Speech you don't need to hear to work with the sounds. Cued Speech is processed in the auditory center of the brain, and when you put it all together, the brain processes it just as if the child was HEARING it. Axel IS hearing it, and that should really be all I care about. Eventually he'll be able to cue the words for us to understand him. He shouldn't need to say it for us to understand, but if he does that will just be an added benefit. If I know he CAN make a sound, then I'll focus on that, but I need to lay off when he can't and let a speech therapist work on that part. LOL Like "an". He can say the /a/, but he cannot make /n/ with his mouth and I don't know how to teach him.

Anyway, here's the video. Watch his hands very closely. Sorry I can't get his hands AND face all in the shot. And turn your volume down since I talk loud. LOL You'll notice the lessons teach LOTS of stuff. We have matching, "same" and "different" (though i didn't put much emphasis on the signs since I wanted him cuing) not to mention working on the sounds and the cues for them! Also, I used this lesson to introduce the sign "don't know".


Thursday, February 24, 2011

Rubee

Rubee is the matriarch of our dog pack.




She had 38 puppies for us.












Puppies that have gone on to be the best companions, better than their families could have dreamed of.

She was the best dog mom... ever!




She taught her kids how to behave during the holiday mayem




Rubee was always helpful with whatever dogs we had here. Helping them to learn how to be a well mannered dog.





Rubee has loved Angela.



Rubee is Dean's dog.


Always by his side. Loyal. No matter what, she was there for him. She was there when his previous wife, Fae, passed away from breast cancer. She came along with him to my house when he and I first met.


Rubee is 9 1/2 years old now, and she is very sick. I've known in my gut for several months that there was something happening to her. Inside. Where we couldn't see it. I just knew because she told me she was feeling different.

A few days ago she came over to talk to me. Insistent. I scratched her nose like I always do, and noticed that she was breathing heavy. She didn't seem stressed at all, just breathing....a little different....

Three days ago she only ate about 1/2 her food. Rubee always eats. Yesterday she didn't eat anything. Last night she wanted to stay in the basement, and when Dean tried to coax her up the stairs to come to bed, she had a hard time.

Dean brought Rubee to the vet today.

He called me in tears.

Rubee is sick.

He left her there while they did some tests, and the kids and I went to pick her up. And I had to make a decision I wasn't prepared to have to make today.

She has a tumor in her heart. She is tired.

Tomorrow we will have to say goodbye to Rubee. Our beloved, faithful Rubee.
Please say a prayer for Rubee. And for Dean. And Angela. and Axel who doesn't understand why we're all crying. And me.

CT is a bust

Axel was supposed to have a CT with contrast today. This would allow the spine surgeon to look at the anatomy of his arteries and veins in the area to make sure there are no abnormalities he needs to take into consideration prior to doing the spinal fusion.

We were able to get the I.V. in while Axel kicked like a kung fu stuntman. We strapped him all down and he calmed down very well and laid very still. The problem was he was just on edge enough that we didn't think he would hold still once the contrast was started. The contrast feels very odd (I had it a couple years ago. It makes you feel like you've just peed yourself! LOL) and we were pretty sure Axel would have freaked out once that started. I don't know who's idea it was to try this without sedation, but I know it wasn't mine! The contrast is not without risks, so we opted to avoid the trial and error method.

I let the radiologist know that Axel was going to be in on the 7th to have his dental work done under anesthesia, so they were able to add the CT scan to that schedule as well. Kind of a waste of a morning today,  not feeding the kid, etc. But, we tried. And we know it will get done on the 7th without issue!

I have a fun post coming later tonight about some of the new stuff Axel is doing now!

Wednesday, February 23, 2011

teasers

Just another teaser, that relates to this post


On reader?

If you're on reader, I updated my blog header. Finally.

Thanks!

Missy added a nice comment about my blog on the About.com Reader's choice nominations. Go ahead and add your own comments. And don't forget to vote! As you can see, I'm several HUNDRED votes behind. Maybe you can help spread the word?

Tuesday, February 22, 2011

GIDDY

My friend Lisa, who's been following my blog here for a long time, is also my sister in leather. She shares a love for something I hold dear to my heart. Something had to set aside most of last summer because all of our spare cash was being put into the adoption.

Tonight Lisa posted this on my Facebook wall.

As soon as I opened the link, my heart rate doubled, I swear! I felt all full of butterflies in my stomach, and my palms got sweaty.  My throttle hand even started tingling. Sounds like love, doesn't it?

For those who are new here, I spend my summers doing this:







Did you notice the bike with the sidecar? That's Nooner and Spank. Angela rides in Spank. This was a custom job I had done just for Angela. And when I want to ride on just two wheels, Spank can hang out in the garage while Nooner and I ride the countryside.

Right now Nooner and Spank are cold and lonely in the garage. I have a little work to do on Nooner before I can ride for the first time this season, which is why I ended ride season in July last year. Soon Nooner.....very very soon!

Breath in, Breath out

I was able to get Axel's dental surgery scheduled for March 7th. SUPER!!! His spine surgery can be scheduled 4 weeks after that. Which puts us to the first week of April.

Ohhhh small problem there. The spine surgeon is gone most of the month of April.

That puts us to May. I have "things" going on in May. Big things. REALLY big things. Ok God, what is up with this?

I put Axel on a cancellation list. If someone cancels their surgery because their kid is sick or something, Axel could get in.

Ok God, do your stuff. There is a reason for all things. I keep having to remind myself of that. A reason for all things....a reason for all things...a reason for all things....

Monday, February 21, 2011

How Much Did She Cost?

Thanks to Christine for posting this.

Relax

Axel and Roman.....Chillaxin

Enough already!

We have now had 72 inches of snow this year. The last 12 inches were in the last 22 hours. I'm so over the snow now. Really.

My neice's car is parked in our driveway.  She's in Jamaica getting married and we live close to the airport so we're the family Park-n-Ride. Digging her car out this weekend should be fun.

Dean's car is under there somewhere. Nice.

Dean blew the driveway last night and there was about 12 inches. This morning only about 3 more or so.