Tuesday, July 31, 2012

Baths and blankies

I got a new sewing machine for Christmas last year. I just barely pulled that sucker out last night! It feels so good to have my stuff out again, and I have my stress reliever of crocheting my blankets!

If you are new to my blog, I have a separate blog where I make blankies for kids with life threatening illnesses. I've sent out over 200 blankies, to 7 countries around the world!! But the blankie making slowed down around Arina's adoption and has virtually stopped since our move out of state. I really want to get back to making blankies, I miss the pictures of the beautiful kids and their blankies. I also want to add something new. I want to make blankets for people to auction to help raise money for their adoptions. I currently have 6 blankets in auctions right now to help families rescue their babies!
The blankie blog is a mess. The person that did the blog for me has vanished, and so has my blog! I have someone that can help fix it, but I have also lost the buttons. One of the buttons is what you click on to order a blankie. I have absolutely no idea how to fix these things. I've always had other people do my blogs for me because I'm so computer illiterate! Please email me at laceyrugg@hotmail.com if you can help. You can also email me if you want to donate some material for the blankies. I don't have any kind of place right now that takes cash donations, I may set that up in the future if people would like to help!
Please, if you have never been there, go to the blankie blog, even though its a mess, the kids pictures and stories are still there. Scan through them, I promise you'll be inspired!

Another inspiration. Little miss princess has a new trick! I may have to start bathing her brother in the evening when daddy is home! The last two times I went to bath Jax, a certain someone jumped in the bathtub with her clothes on before I could get him in. The first time I pulled her out and she just flipped! So I took her clothes off and let her back in. What she wanted was to be in the tub with Jax! The second time we just let her stay in and daddy grabbed his camera. She loves to help take care of Jax. Is she precious or what??

Sunday, July 29, 2012

Daddy's girl

Arina is a daddy's girl.

Every morning before I even get her out of bed she asks for daddy. She'll run into my room ready to "boo", scare daddy!

The other day she decided to wait very patiently on the balcony for daddy to come home from work.

Unfortunetly her concept of time is a wee bit off.

By the time daddy actually got home, she was out for the count!
Sweet baby girl!!

Friday, July 20, 2012

Beach day

Whew, how times flies by!

Tanner and Carter started school Monday because they do year round. Bleh, I hate it!
One thing that really attracted me to this city is actually turning out to be a big flaw. A lot of young families and tons of new homes, means the schools are totally overwhelmed! Their school has over 1400 kids, and their 4th grade is full, meaning Carter would have to transfer to another school until a spot opened up. I moved Tanner with him so they would stay together, but my fight for Tanner's placement is just beginning!
Tanner is in 6th grade, which luckily is still in elementary. I want to hold him back to 5th. His birthday is Aug. 20, so he barely missed the deadline anyway. I almost held him in kindergarten, but once I realized I could hold him back, his autism school had filled his spot, and he would have been stuck with no where to go, so we started him in kindergarten. As he's getting older, the gap between him and his peers is widening. Not to mention he is at least 2 feet shorter than every. single. child in his class. He's not just short, but tiny at barely 50 lbs. Socially he's even farther behind. But the school won't hold him back because its not recommended in his last IEP from Utah. I have to start him in 6th, and then have a meeting to hold him back. So he's in a 6th grade class right now, and I'm just praying that we don't have a disaster on our hands! With an autistic child, one bad experience will do him in, and it will be a fight just to get him back to school!

We try and remember that "technically" its still summer, and finally got in a trip to the beach. We need many more of these before winter, because I forgot how much we love the beach!
It was just Carter and the babies, Tanner and Mondo had other things going.
Carter tried skimboarding, but it just wasn't his thing. But oh he did indeed find something he loved!

boogie boarding! Man we couldn't get this kid out of the water! He LOVED it!

Little miss just loved running from the water.

Sometimes the water would catch her!

She found a boyfriend,

but mostly she just loved sitting on the beach. We'll have to remember to stock up on beach toys before our next trip!

Jax was Jax, just happy chilling on his blanket, pulling tubes!

Wednesday, July 18, 2012

Little dancer girl!

Arina has been to two dance classes. Daddy took her last Friday because i had an appointment with Jax in LA. He kept texting me, telling me she was a maniac! That she wouldn't sit still and she was all over the place. I was a little disappointed, but when I got home and watched the videos he took, I think he over reacted a little bit. He is expecting her to be perfect already, and she's only 2!

Yes, she wandered more than the first time, I'm not sure if she just needs more time, or needs someone in there to keep her on task. But you can see from the videos that she knows what they are doing, and many times she does try to copy. I think soon she'll be listening and paying attention like a pro!!
Besides, these videos are so freaking cute!! I love when she see's daddy in the window and waves!

Monday, July 16, 2012

Share your secrets!

Even though there are some things I just have to splurge on, I'm one that rarely pays full price for something. I LOVE Old Navy and The Childrens Place, but I almost always get great deals on their clothes.

Right now we have season passes to 3 different parks. Disneyland, Universal Studios, and Sea World. The only one I paid full price for is Disneyland, because they don't do deals on season passes. Although I get free parking, and a nice discount on food and souvenirs. Both Universal and Sea World, we payed for one day and got 2012 free. I actually had a coupon for $20 dollars off each ticket at Universal, so we got a killer deal! for me planning a vacation can be time consuming. I spend a lot of time finding the cheapest hotels. But it not only pays off, but my trip is planned out so nicely and stress free!

My hubby doesn't make a lot of money. We make just enough for Jax to not qualify for any state services. Yes, we are in "that" bracket!
But we are still able to do fun stuff. Our biggest thing is we have no debt. We have no car payments, and no credit card debt. We do get medical debt of course at the beginning of the year when out of pocket maxes start over, but we try to pay that off quickly! That makes daddy's income stretch a lot farther.
Even though I get great deals, I've always struggled in the grocery department. You watch extreme couponers and wonder how in the world they do that! I get the Sunday paper, but rarely get good coupons in there. I'm going to cancel it since it seems I pay more for the paper than I get back in coupons. Online I could never find coupons without them wanting me to pay or join some club. I was getting really frustrated!
One day I posted on Facebook for people to give me their secrets. I got some great info that I wanted to pass on. And if you have a secret that I don't, then please share in the comments for us all to benefit from!!
Grocerysmarts.com is a place that they post all the stores adds! I hate going through each add separately. Here you go down the line, click on the ones you want, and print out only those ones. It will even tell you if there is a coupon to make it even cheaper, and a lot of times will link you to that coupon! The Krazy coupon lady is on facebook. I like that site because I can get to all the coupon sites from right there. People also post killer deals they find on that site.
I went grocery shopping yesterday and spent $110. I normally spend $150. I'm still learning, so I'm not saving as much as most people do. But 40 dollars is 40 dollars in my pocket!!

So whats your secret to saving??

Friday, July 13, 2012

Jaxson talking

Here you go Tracie. Jax talking. This is the last video I have of his voice. You can see by his fat face that this was right before he was trached. When I watched it tonight before posting it, I had all 3 boys come in when they heard his voice. Carter was like, "oh I miss his voice".

This video is VERY hard for me to watch.
To answer other questions, the passy muir doesn't really work for him, he still isn't able to make sounds, and he doesn't tolerate it on.

Wednesday, July 11, 2012

princess dreams

Really wanting to add one more princess to our house of boys.

Our princess has brought the whole family so much joy.

Really wishing the time would hurry up and be right!!

Sunday, July 8, 2012

To love/hate the trach!

Carter helping Jax ride the merry-go-round.

You all know that Jax trach has been a love/hate relationship for me. Many people say, I love it because it saved my child's life. It did indeed save my child's life, but I still hate it. It has robbed me of my beautiful son's voice, and no, he has not, and will not, figure out how to talk over it. He just doesn't have the strength or comprehension. I've posted pics of me sleeping on the floor in Jax room, because I've had to suction him all night long. I can easily say that I have slept less since having the trach, than in my whole adult life combined!
The great things, no more worrying about a traumatic intubation. Jax lungs have improved greatly since having the trach put in. It is certainly peace of mind having an automatic airway in a fragile child! Our ENT that put the trach in said that it will probably be permanent. If, by some chance, it could come out, he would need a big airway surgery first.

So it was quite a surprise to me when our new ENT, who has only seen Jax in clinic once, suggested a path of getting that trach out after she scoped him. She also said he would need airway surgery, but she said she's seen tracheal malaysia much worse than what he has. She seemed excited after the scope, that we could get him decannulated soon.

Of course I have 30 seconds of bliss before reality crashes down. 30 seconds of yes, maybe we can actually go back to life before the trach. Maybe I will indeed hear my little boys voice again.

Yes, we can!

30 seconds up....

While I love her enthusiasm, its just not feasible. We did not trach Jax because of his tracheal malaysia. We actually didn't even know the extent of his airway, he had never had a bronch until the trach was put in. We trached Jax because of his lungs. Jax can not do c-pap. With that strong air flow, it pushes his tongue right in his airway, and he actually does worse on that than regular oxygen. Without the vent or c-pap, his pulmonary hypertension and lung disease will more than likely get worse again. Its obvious that he still has poor blood return to his heart, his face and neck are still puffy. I wont have an airway surgery, take the trach out, and then have to go through the trach surgery again. I just won't do it. ENT also fails to realize she is not the only one making this decision. Pulmo and cardio both gave a big thumbs down to the trach coming out.
I haven't talked to ENT since his surgery, our appointment is coming up soon. I really like her, and hope that she understands where we are all coming from. That the trach has to stay, at least for the time being.

This momma is going to have to continue to hear her son's voice in her memory, and hope that someday she will hear the real thing again!

(will you look at that teenager! He absolutely refuses to have a good pic taken!)

Friday, July 6, 2012

Be still my heart!

Today was a very exciting day.

Today was Arina's first dance class.

We got the bun in fairly easily!

Even the smallest leotard and tights I could find were too big, and the shoes, ginormous! But she knew where she was going, and she was ready!
This dance studio has a special needs class, which I thought was cool. But it only had older kids, the youngest was five. I thought that was too old for Arina.
Plus, why should I separate her? There is no reason she can't go into a class with children her own age. "Typical children" her own age!

I will admit that I was petrified! I lay in bed last night with all kinds of thoughts running through my head.
I thought that maybe she would just run around the studio, oblivious to everyone else in the room.
Or she would just sit on the side, unwilling to participate.
But my biggest fear was that the other parents were going to not want her in their children's class. That they would be angry that a "special needs" child would be in with their "typical kids".
I'm honestly not sure why I thought that. I have yet to see any negativity towards Arina in the last year and a half. Not a thing. But I've heard the stories, and I know it does indeed happen sometimes.
When that door opened she was right inside. The knot in my stomach loosened a bit when she sat and stretched with the class.
(Sorry, these pics were taken through glass!)

There were a few times when she had to scoot her back over, because she would scoot closer to another girl to give her a hug. There were a few times when I wanted to go inside and talk to the teacher, after all, I forgot to tell her that she had Down syndrome (in case she couldn't tell!) and that she has very little speech. But her receptive language is right in her age group. I wanted to tell her it was ok to get her and put her back if she walked away from the group. That it might be harder to keep her on track. But I held off, I had to let her learn.
And for the most part, she did amazing! It was so hard for this momma to hold back tears!

Sometimes the wand went in the mouth, and sometimes when the teacher sat her down she would stand back up and follow her.
Her shoes kept falling off, (the teacher told me a place to get tiny shoes!) and yes, this dance mom cut her tights already. I never had a pair of tights uncut. I wanted to be able to pull them up so she didn't slip when class was over!

But after all my fears, I call it a huge success for my princess!!

Tuesday, July 3, 2012

Play ball!

Life is just a tad bit crazy right now!

And for once, its not Jax making life crazy, its this beautiful boy!

Most little boys play little league, but this boy is a little different. We found his amazing talent for baseball when he was just 4. Right now at 9, he plays with 11 and 12 year olds, and is still one of the best on the team. Here we've started private catchers classes, (the position he excels at) because this kid isn't in it for fun. He has high hopes of a college scholarship, and of course he talks about the major leagues. Now this kid knows that the majors is mostly about luck! There are a thousand kids with the same talent, but only the lucky one's will be seen! So he has a back up plan. He wants to be a pharmacist!
Every time he plays he has umpires and other coaches wanting his name and age. One of his coaches from this year tells people that someday he'll be paying to watch Carter play. I guess it helps that, like his parent's, he is vertically challenged, so his skill compared to his size really makes him stand out.
But with All-stars, travel ball, and his academy classes, he plays 7 days a week. This is what you do when you want to go far! No pain, no gain!

Right now we are knee deep in All-stars. Last nights game was a nailbiter. Carter was hit in the arm with a foul ball. He actually cried, and even after throwing a few times, he had to come out. This kid NEVER comes out of the game, so I was concerned that he was really hurt. I mean the kid was plowed over at the plate and stayed in the game. After that play one of his coaches nicknamed him "the rock". Catcher can be a dangerous position!
Today his arm feels better, and the only reminder is the baseball stitching marks in his arm. A boys right of passage into baseball!
So tonight he'll start again, and we are getting down to the wire, any loss now means they are out of the running for championship.
I swear I'm more nervous than he is!
After all, someday we may be taking this picture at a major league stadium!

Unfortunetly Carter's team lost tonight. They are out, and placed 4th overall. Not too shabby. It kind of stinks for him because he played awsome! He almost hit a home run, it bounced once in front of the fence! The kid is freaking 9 and barely 4 feet tall!