Sister's ideas of fun

Sister spent 8 months being completely and totally excited about Zac's arrival, and now that he is here, her excitement level is even higher!

She just can't get enough of him. She would have me live over there so that she could be with him 24/7. In fact, I have caught her several times calling him her little brother. She has also been talking a lot about when Brother was just a baby and calling him her little brother too. I have to keep reminding her that she has a big brother and that Zac is her cousin. (smile)

Sister also LOVES Power Rangers and, more often than not, is rehearsing lines from the show, rehearsing actions from their "power moves" and making up imaginary foes to fight.

When my mom found this costume at a yard sale for a couple of bucks she just knew she had to get it.

My mom came all the way up just to give it to her and see her reaction and she was not disappointed. She danced down the hall and in the front room for at least 5 minutes singing, "Oh ya! Oh ya! Oh ya!"

She has worn it every day since Saturday and the neighborhood may just think that Power Rangers are real after seeing one do Karate moves all over the front yard and sidewalk.

We have had a LOT of snow lately.

We have a metal roof and the snow slides right off. I had to take a picture of it before it fell so you could see what it looks like.

Before the Power Ranger suit was the snow suit for Sister. She loved playing in the snow. She went out every day after school for 5 days straight.

It all started after I went out with the neighborhood kids to build a snow sculpture (more on that in another post later).

I was so happy to see that Sister had made a little snowman of her own with a branch for an arm and everything.

Baby's Growing Up...

She can get in the tub all by herself...

I am hoping, though, that eventually she will remember to remove her clothing before getting in.

She is able to take her own Facebook Profile Photo...

 She's got this one down: close-up of her full lips, little whisp of hair in front and the doe-eyed look. All she has to learn now is to photoshop it to look "official."

Tee hee!

I just saw a post on Facebook today, though that summed her up, it was something like, "Silence is golden... unless you have a toddler, then it means they're up to something."

I can deal with hopping in the tub with Sister fully clothed and stealing my phone, I just hope she doesn't decide to steal my phone when she decides to hop in the tub...

Roley Poley Poo

You know, as a mother, you always try to make sure your kids are eating right, eating healthy.

                                      photo by Pointe Digital Photography

You want them to gain weight, grow taller, look healthy.

You know, that "mom" stuff we worry about.

At our house the way our kids eat is a constant concern/thought/obsession.

Why?

Side effects partially.

Sometimes with certain meds children lose their appetites as a side affect.

But, more often than that, our kids just don't want to stop running, jumping, swinging, rolling, flipping, or flopping to sit and eat.

In fact, Sister's normal routine at dinner time is to sit in her chair, take one bite, run over to the couch arm, flop over it backwards 2 or 3 times until Marc and/or I strongly encourage her back to take another bite and then it starts over again. So because of not getting in enough nutrition between all the flips and flops she lives on PediaSure or a generic equivilant.

Brother won't eat unless it is meat with LOTS of Montreal Steak Seasoning on it (it's a spice full of garlic, pepper, onion and other strong flavors) or apples. And the consequence of that is the reakiness of garlic coming from his pores and his breath... mmmmm....

Baby, well, she just doesn't sit still really. The only way to get her to eat is by using the same seasoning Brother loves on pretty much anything---macaroni and cheese, hotdogs, chicken nuggets, lasagna. The way to help out with her nutrition is to supplement with Carnation Instant Breakfast.

Now, in case you haven't caught on yet, all these dietary issues are due to sensory needs.

Sister needs stimulation even when she is sitting to eat.

Brother has low sensory in his mouth so he needs lots of flavor to even enjoy his food.

And Baby, is like both Brother and Sister.

But, the problem with her is that with all the sugar she is getting in her diet from the Instant Breakfast drink it seems to affect her bowel movements.

I know, too much information.

But, it really is very funny.

Seriously.

Very funny.

Sometimes she poops pellets.

Ya, pellets.

Looks like little deer droppings.

I feel sorry for her a little, but it doesn't seem to bother her at all.

It really just bothers me, or any other person who is changing her diaper.

They roll.

What rolls?

Her poop.

Where?

Out of the diaper onto whatever surface is nearby.

You have to be ready to "catch" them in the diaper before you open it all the way.

There have been times when I stand her up after the diaper change that one pellet will come falling our of her shirt!

Once when I was changing her diaper at my parent's house, my dad passed by and calmly comments, "Ah... you lost a few..."

The other night after I came home from grocery shopping I met Marc on the way in while he was taking a stinky diaper out.

I came in and was getting Sister's bed ready for her to go to bed. As I was straightening her blankets I found, yet, another one of those pesky purple gummy mummy candies from Halloween dried and stuck to her bed. I picked it up but it felt a little different and it wasn't as sticky as the others I had to pry from her bed covers in the last week...

...

"Marc, did you change Baby's diaper on Sister's bed?!"

"Ya, why?"

Introducing Zac and Realizing Our Life

Isn't he adorable? This is Zac (on my blog).

This is a photo I took when he was about 9 hours old... look at that fuzzy hair... aw.

Before I show you a bunch of adorable pictures I have to tell you the experience I was able to have when Zac was being brought into the world and being cared for at the hospital by his parents.

Kirsten had asked me months ago if I would care for Melly while she and Jeremy spent time together at the hospital with the new baby.

We kept hoping he would come a little early, but it looked like Kirsten was going to go as scheduled to be induced Friday morning. She called me Thursday night and we arranged for everything the next day...

at 2:30 am Friday morning my phone rang and Jeremy informed me that Kirsten's water broke. Thank goodness they live really close by, it was the middle of the night and no cops were out because when they asked if I could come to their house after her water broke I was speeding down the 40 mph roads at at least 75... shhhh, don't tell anyone.

I got there, they left, and I went inside to be with Melly while she slept till the morning when I would wake her to go back to my house and get my kids ready for school.

I was about to make my bed when I heard a "thump." I checked on the bed and Melly had rolled off her little toddler bed but was still asleep. I was so wide awake from the adrenaline of driving and the excitement of my little sister having another baby that I thought I would see if anything needed to be cleaned up. Then I heard another "thump."

I walked in and Melly was back on her bed. I walked over to check on her and saw that her eyes were wide open. She reached up with both arms and a smile and gave me a big hug. She wasn't even scared or confused that I was there in the middle of the night in her room. She happily came with me to the front room to watch a movie while I gathered a few things along with the car seat. 

When I went out the door she got off the couch to follow and I said, "Stay there. I'll be right back." I didn't expect any response, as with my 3 year old she doesn't even seem to understand that kind of thing. But, Melly, looked at me and hopped back up on the couch and went on to watch the movie.

...

She understood me.

Of course she understood me.

She doesn't have Fragile X like Baby does.

I am talking to a typically developing child here.

It was a "wow" moment for me.

"Wow," I forget that my child isn't "normal" sometimes.

"Wow," I can't believe how far behind Baby really is.

"Wow," this is what it would be like if Baby didn't have FXS.

I got over my shock and we got home at 3am and I put her back to bed in Sister's room.

And, again, I was amazed when she understood, "K, we are going to go back to sleep now. You are in Sister's room and I am down the hall." Melly looked at me with little concern, fussed a moment when I left and that was that.

Then I got a text saying that Zac had been born breech naturally because he came so fast. They didn't know he was breech. Which made me think about what a miracle that all went well while Kirsten and Jeremy waited for me in their car after he water broke. She had him less than an hour after I got to their house. Zac was almost 8 pounds and 20 inches long. He was a good sized baby to be coming breech. What a little miracle baby he is.

I stayed awake the rest of the night from the excitement and also because my mind wouldn't stop spinning wondering what my life would be like if my children understood what I was saying when they were 20 months old.

So many possibilities.

So many doors opened.

It was finally 6am and Sister was awake now.

I was jerked from my daydreams of "normal" life as I went on through the morning administering several meds to 3 different children, while Melly wandered about in complete excitement being surrounded by her cousins that she LOVES.

Melly and Sister are really good friends.

Melly was so sad when Sister went to school.

But she decided that Baby was OK.

And she was especially excited when I showed her the picture of her new baby brother.

Again, she seemed to understand. She was so excited and anxious to see him.

I wanted to give Kirsten time to rest a bit before we got there and thought that Melly should take a nap so that she would be extra happy when she got there.

So I put her in Sister's room for a nap.

...

About 30 minutes later I heard her mulling around in there so I thought, "Hmmm, that was a short nap," and I went in to get her.

I guess she found a marker.

A water color, bright pink marker.

Her hands were glowing.

I tried to get a picture but this does it no justice.

Too funny!

That was the moment that I realized "normal" or FX you still love markers and the exploration of that they do to your skin and the sheets. Tee hee!

So, since she seemed to have gotten a "nap" in, I figured now was a good time to take her to see her baby brother and take some photos. I called Lindsey to come watch Baby because I didn't want to tackle two little girls at the hospital while trying to take photos. (I'm not a crazy person, you know... I just play one on this blog.)

I gave Melly my "Visitor" badge because it was just too cute to have her wear it.

She didn't know what to think of the whole thing quite yet. So she sat with mom while I took some pics.

Look at that wrinkly little head. I love it. It reminds me of Brother when he was born.
Ah, how I miss having babies around.

Happy Daddy.

How could you not love those little pink toes?

Finally Melly gets to hold her brother. She can hardly stand it she is so excited!

She was so upset when she didn't get to hold him anymore... I had to take a photo for memory's sake.

mom and son

When we got back Melly took a real nap until the kids got home from school. She was so happy to see Sister again and they played and played until it was our date time. We had respite that night for our 3 kids so we just took Melly with us. That was another major moment that I realized how different it was to have a kid without Fragile X with us at a restaurant. Oh, ya, she fussed a little with the crowd and new people but, she sat in her chair, she ate (a lot) and she even kept her food on the table or in her mouth. It was awesome! I was laughing inside that my kids would have been crying, screaming, slapping the table, climbing underneath the table, hopping up and down, and not even eating what we ordered for them.

I missed them.

I wasn't used to it being so easy.

When it's easy I don't have another kid with me to remind me how hard my kids are and for some weird reason I missed them.

So after dinner we brought Melly home and put her to bed and then I went and picked up the kids and took them to see their new cousin, Zac.

Sister had been begging (falling apart, stimming, freaking out, obsessing) to see "her" Zac.

So as much as I was dreading taking all 3 of my children to the hospital to see a baby, I was also very happy to have them in tow.

Then we got out of the car.

Baby went one way, Sister went another, and Brother was hollering at me what to do but not wiling to help me. Then, out of the blue 2 little dogs come wandering over to us... not good. Brother does not do well with strange, small dogs.

Panic!!

Run!!!

Scream!!!

And that was all Brother...

The dogs thought he was playing. Poor guy. I was trying to gather up the girls and couldn't get to him in time before he tripped over one of the dogs and fell on his hands and knees.

He was now crying and I was still trying to get to him while dragging the crying/whining girls along with me.

They all started to calm down as they saw the elevator through the glass doors.

They love elevators.

We walk in.

Calm.

"Aaaaaaaaahhhhhh!!!!" Brother hollers into and echoey entryway. One of the dogs had snuck in behind us. We ran to the elevator trying to close the door as fast as possible. You would have thought we were in a slasher movie and we were the dumb ones trying to get away from the zombie...

Anyway, we made it.

And Sister only asked, "Are we going to see Zac?" 100 times before we got to the room.

She could hardly contain herself.

We had Melly into the next day, Saturday, and she and Sister played all day. Sister was so sad when Melly had to take a nap...

It was a lot of fun to have Melly with us for 2 nights and 2 days. Sister was so sad to see her go.

In fact, Sister wanted to make sure to go with her when we brought her back to her mom and dad and to see if she liked her brother.

Oh, I love, that Sister loves him so much. She couldn't stop kissing his fuzzy little head.

We love you Zac and we are so glad you are finally here!!!

I have a feeling many will ask, so here is the answer: Yes, Kirsten is a carrier of Fragile X Syndrome and they had Zac get his blood drawn for the test the day he was born. It will be a while before they get the results. Melly does not have FXS, nor is she a carrier.

The last post about Halloween

OK, so finally, I am on my last post that has Halloween in it.

I'm eventually going to catch up, I promise.

The weekend before Halloween I was brave and decided to take Brother and Sister to a little celebration in the neighboring town to the Riverwoods (basically just around the corner from us). I was mostly brave because my friend, Amanda, and her kids Ali and Pepe and their student they had with them for a week from Japan, Conan. Marc was home with Baby. (He was not as brave as I.)

I know it may sound trivial to most of you, but taking my kids to a crowded Halloween Celebration with loud music, surrounding vendors and bounce houses is pretty darned overwhelming for any kid let alone one with hyper-arousal, anxiety and sensory processing issues...

But, with their friends there, they did GREAT! And I do mean GREAT!

I was so happy and so were they.

I have become so reluctant to take them to any big activities because how overwhelming it is for them. But I was feeling like I haven't been giving them all the opportunities they need to learn and mature.

So there I was, in the middle of this shopping center with music and all and my kids were loving it. Yes, you could see that some of it was overwhelming for them, but they were able to adapt and calm themselves to enjoy the time we spent there.

I was so proud of them. I just had to keep telling them so.

Sister couldn't have been prouder of herself, and Brother just kept bashfully giggling.

Man, I love these kids.

Brother, Sister and Pepe thought the Alpaca's at the petting zoo were pretty cool.

I had to get Conan in there too.

They had lots of free games there for the kids and Sister thought this one was pretty cool. I was surprised she let them blindfold her. She was so proud of her self when she saw her work.

She really got into the pumpkin bowling. That was my favorite to watch. She was giggling because she was so excited!

Now these are the kind of displays I hope to see at the Parade of Pumpkins next year. These were awesome.

It was pretty cool because this was my favorite one and I found out after posting it on Facebook that it was actually done in honor of my friends niece who had recently passed away. It really was an amazing display.

 This next round of pictures are because Sister was SO EXCITED about the "Christmas Tree" that I just had to keep taking pictures and adding everyone in...

Brother just had to have me take a picture of him with the "water fall." To say he loves waterfalls would be an understatement.

Another thing Sister was VERY excited about.

It was really cute because we were wandering around the bounce houses trying to decide if we should let our kids do it and the daughter of one of my neighbors saw Sister and offered her their extra ticket. She hardly knows us, and we hardly know here but she knows Sister from playing with her kids in the neighborhood. So sweet. So since Sister had a ticket, of course, we had to get one for the rest of the kids. And good thing too, the next series of pictures will show you how much fun they had.

Sister was pretty excited about the next part of the petting zoo with the miniature ponies. I don't think I have ever seen them so small. Sister just could not stop giggling about them.

They even had free horse-drawn wagon rides. Brother thought that was the best thing ever!!

Sister really liked Conan and stuck to him like the glue the whole day.

The headless horseman was pretty impressive!

Then, because we had the kids with us, we, of course, had to go to the Blickenstaff's toy store. But, Brother didn't seem to care as much for the toys as he did the mummy display. I think that was the toy he wanted to take home the most.

Ali had fun joining in to see what Brother was so excited about.

I think I need to get him one of this "wiggle" bikes. That was awesome and he was so confident on it.

Trying on the hats for my camera.

One last moment in the mummy case.

The next day we had a birthday celebration for my mom at her house.

Sister wanted to make a pumpkin pie for her with the pumpkin she picked with her class. I thought it was so cute that she wanted to use her precious little pumpkin for grandma.

I have NEVER made a pumpkin pie from scratch and I can count on one hand how many times I have made any kind of homemade crust pie.

It was a lot of work, but it was so worth it as Sister was giggling with excitement the entire time we were getting everything ready. She even oversaw my pumpkin preparation of cutting, peeling, gutting, cooking and pureeing the pumpkin. When it came time for her to help me with the crust and then the filling she was ecstatic.

I hate to inform you that our pumpkin pie was awful, but the pictures I took of the memory was awesome!

She was so proud to let grandma have a piece of her homemade pumpkin pie.

The party was a lot of fun. We had food and roasted hotdogs. But, Baby was so active that I really didn't get much time to socialize.

My uncle, Jeff saw how much she was keeping me busy and thought she would enjoy seeing the animals, so he took her to see the bunnies...

 

and the horse...

and the dog...

Just before the end of the party I just had to snap a shot of the beautiful sunset.