Sunday, September 27, 2015

Weekend Fun

I work hard around the home so that weekends can be spent doing something fun as a family. Fall is the perfect time of year for it and free fun is to be found everywhere. These shots were taken out in Scottsdale with vendors aimed at kids. It's neat to know all the things that are avaliable to kids, just wished I had the money. We had fun trying it all out though.
Eli has had fun attending a few birthday parties and learning how to sign happy birthday to them.

We got a groupon pass to the Children's Museum and the two little ones and I went during the weekday. Little man was so busy I had to keep him strapped in the stroller unless we were in a closed off room. He's keeping me on my feet, that's for sure.

A Rita's run with our favorite Grandma!
Glendale Teddy Bear Tea festival. Keila took one of her teddy bears and donated it to the Fire Department for children in crisis. I'm proud of her generous heart.

It's nice to have all these memories but sometimes it tires us out a little!

Tuesday, September 22, 2015

Pumpkin At Almost a Year!

Pumpkin is offically 11 months! She goes by so many nicknames in our household - Goo goo Doll, Pumpkin Goo, Goozy, Button - but whatever you call her, she's a bright light we can't imagine our lives without.
There's a whole lot of spunk in her petite frame. It must come from being the fourth child, or having the brother just older than her not be so gentle. I've watched as Bubby grabs a toy from her that she assert her right quick as a blink, pulling it back with a defiant yell. If that doesn't work, she's quick to get recruits and seems to have the older two wrapped around her finger.
She loves chocolate!
She is ever so affectionate! Very early on she would hug back and even show that affection to those who play with her which delighted the people at the kid club of the gym I go to. Anything soft and furry just begs for her to bury her face into and squeeze with her little arms. Her favorite stuff animals all happen to be larger than her and it's amusing to see her struggle moving the stuffed animal when she's done 'hugs and loves'. Just like Big Sissy she is facinated by animals and watches them with intense curiosity, gently reaching out to touch when she deems it safe and giggling if kisses are given in return.
Much to our chagrin she is physically one of our strongest kids. She is determined to walk and will probably take her first steps very soon which will have me frazzeled with keeping up with her and Bubby. Just tonight she stood up on her own and I watched her face change from one of shock to extreme pride - I'm a big girl I am! She began clapping for herself which knocked her back to her bottom but she kept grinning. I suspect if she didn't spend so much time in a carseat shuffling her siblings around she's be running circles around us by now!

This is back in early July

This is the end of July. Crazy gal!

She's still a chatter bug and we often have conversations while I drive. When I imitate her she's delighted and you can hear it in her squeals and giggles. This seems to have ilicited more verbal response from Bubby who chatters back to us. It makes me wonder what I'll see in a few years between the two.

I love watching her sleep, her little bottom in the air,so peaceful and calm. Occasionally she blows bubbles too!
She is just a joy to have in our lives. I'm so glad we were blessed with her!

Sunday, September 13, 2015

Shakin' It Off

Gigi's Playhouse is a nonprofit organization devoted to families with Down Syndrome. The programs are free for the families and offer an opportunity to connect and learn. At the National Down Syndrome Conference I learned they had just opened one up in Phoenix a few months before. Since then we've a class or two and even dropped to nurse Leora and give the kids a break on our way out of town.

One of the last times we were there we entered a drawing for tickets to the Taylor Swift concert. Much to our surprise our names were drawn

The organization is funded by donations and they had originally hoped for tivckets from Taylor Swift that they could use in an auction. This video "Everyone Dreams" was created to attract the superstar's attention.

While Taylor Swift didn't respond, it did catch the attention of the Phoenix Coyotes who then offered their suite for the conference to GiGi's so that those with DS might attend the concert with their plus one. Here we are at a pizza party where Howler came to give us the tickets.

Eli wasn't too sure what the fuss was about with all the camera men, but as long as he had his pizza he was extremely happy.

We had such fun that evening. There was food, fun and new friendships made. To show how small the world is, the father of worked with my high school friend at the Phoenix Zoo. We had to send her a Facebook message to show how small the world is. Incidentally it was his daughter that played the main part of the Everyone Dreams video.

Eli was so exhausted by the end of the night, but he was up for dancing when the last song played - Shake it Off. The song played twice while people were getting seated and both times Eli danced his little heart out so much that the suite just to our lower right became his own private audience. This is him tamed down by exhaustion but filled with pure happy!

It's dark but you can see how much he just lights up at the song.

Wednesday, September 2, 2015

Defying Gravity

Recently a friend posted the song 'Defying Gravity from Wicked. As I listened to it, the lyrics hit me in a whole new light, this song was Eli - his whole little soul has been trying to defy gravity.
Back at the end of July we had a bloody mess with Eli (and I don't mean it in the British sense). Since he's not verbal yet he has a way of getting things for himself. I had just picked up the older two from a church activity and while I was upstairs changing Pumpkins diaper I heard him begin crying and scream in a very angry manner. I rushed don to see him sitting in a pool of blood with an opened can of pineapple by his side that I had thought I had put back far enough to out of his reach. He had sliced deeply into the pad of the fourth finger of his right and the pain angered him even more so that he began flinging his hand back and forth, spraying blood on the cabinet doors in the process. He wouldn't let me put pressure on the wound and I kept wrestling him down to get a good look to see if that was the only cut he had which had me covered in blood.
Isaac came at that moment to see what was the ruckus and could only begin yelling, "there's blood EVERYWHERE!" Which in turn triggered Keila's anxiety and she began to scream and cry that Eli was dying. Amid all the chaos I managed to call Linda, a friend of mine in our congregation. She rushed over and I strapped Eli into his car seat still flinging his hand about and we rushed to the emergency room.

Walking in like a scene from a horror movie has the effect of quickly getting us admitted. The staff was quick to clean the trail of blood we left in our wake and once we were in a room Eli settled down and I could finally put pressure on his finger. He calmed with my singing but began screaming like a banshee when any staff entered the room

Once Kent got there, they drugged Eli so he would calm down enough to for the staff to look at the wound. The area was numbed and six stitches put in. We went home, happy to get back to eat a late lunch and soak our van in peroxide!
Eli struggles with some sensory issues. Typical senses can be over heightened to him and others are dulled where he will seek sensory input. Certain textures bother him, a toothbrush for example takes a lot for him to tolerate. What we hadn't realized was that the ends of the stitches felt very much like that in his mouth. His sense of touch is duller, hence the reasons for his pats feeling more like smacks. The numbing medication in his hand had yet to wear off. We sat him down to eat and we set to the task of cleaning. I glanced at him at some point and to my horror wondered why he looked like a vampire just done feasting. He had tugged at the stitches with his teeth and when he couldn't remove them he began biting his finger crushing it so hard his nail died and fell out days later.

The Lord was looking out for us because the very moment I discovered this our friend Jeff arrived. He took over feeding the other kids and we headed back to the hospital. The staff that attended us before had yet to leave their shift, the wound was cleaned yet again, stitches checked and then it was throughly wrapped.
What does this have to do with defying gravity? The following day he pushed a chair over so he could climb up and grab some pineapple with his good hand.
This is often his task as I cook dinner.

All he wants is to be just like everyone else. If everyone else can serve themselves, he can too. He's the child who pulls out the broom to 'sweep' when I tell everyone to clean up. If I tell everyone it's dinner time, he hauls a handful of utensils and dumps them proudly on the table. When I'm doing laundry, he rushes over to help move the load into the dryer or to pull the clean clothes into the laundry basket for folding. Sometimes such assertiveness has disasterous results, for example if everyone uses a potty he wants too as well.
It's really hard to get mad at him even though it's always a mess to clean. While he physically isn't able to control his muscles to be out of diapers he desperately wants to and until then, he insists on trying. He certainly has the will and most definitely will find a way, with or without me!

Little man practicing basketball. He could do this for an hour at least.

I've begun to better understand how he is frustrated at the world and even at me so very often. He's terribly cute, doll like with his glasses and upraised head tilt. It's easy to think of him as being so little and expect less. This is further enhanced by his inability to communicate clearly yet. Meanwhile the giant inside him aspires to more, his patience and obsessive pursuit of his goal will undoubtly bring him success. Perhaps because so many like him have had to struggle against so many odds is why we dare to dream for these children. While he may not pursue an acting careers, modeling or own his is own restaurant someday, what ever he becomes is what he will truly want for himself and why he will be so happy. He will have earned it and appreciate it more than most of us.
So I hope he will be forgiving of me when I just don't see his vision because I see my baby boy. I shall do my best to remember there is so much more inside than human eyes can see. Fly my little man, fly!