I love...

I love...
     
Coffee in the morning
The sound of raindrops on the roof
Children giggling 
The smell of fresh lilies
Candle light
Red wine
Catching up with friends
Waking up with my babies
Evenings at the park with my girl

Today I have been thinking a a lot about sweet Peyton and her family. The doctors confirmed yesterday that her cancer is not treatable. 


Things like this make you look back and reflect a bit. Things like this make you realize how silly some things are. How unimportant some things are. And how wonderful and very important other things are. 


How important is...having fine china? Owning designer jeans? How old your kid is when he/she sleeps through the night? In the big scheme of things? Not very (though...I do love me some designer jeans and I am sure SOMEDAY Esella will sleep thru the night ;) ) 


So go hold your babies and try to make an effort to take part and enjoy the things you love. Right now I am enjoying the sound of the rain drops on the roof in an otherwise silent home (aaahhhh nap time) with some candles burning. Is 3:30 too early for wine?? ;)
 

Finishing Projects

Happy Monday! Oh, and Happy Memorial Day as well! Technically this would have been Justin's first holiday off since his holiday shut-down...but alas he is at work! So the kiddos and I are hanging at home for a bit before we head over to Joann's to get a couple things to finish decorating their room.

See...at first when we found out we were pregnant with #2 we were not going to make a nursery for the baby. Why? Because we knew the baby would sleep with us for a while so why bother?

Fast forward to about 21 weeks pregnant. After we found out the baby was a boy. I suddenly HAD to make a "space" for the baby. I felt like he was just as important as Ellie so why wouldn't we at least make him a space? We decided Ellie and the baby could share a room so we bought Ellie her big girl bed, turned the toddler bed back to a crib and I got shopping. 

I also suffered from horrific crazy nesting syndrome with this pregnancy. I was obsessed with cleaning out every closet and the garage. We even had ourselves a garage sale, and then gave away ALL the stuff we didn't sell to my friend so she could sell it.

It felt awesome and freeing!

(Too bad 6 months later you can't tell all the work I did...but I digress...)

Anyway I had ALL these great ideas for decorating the kids room...how to bring the girl and boy bedding together...and then it happened.

Exhaustion. 

The kind that comes with having a 2 year old with medical issues (that at the time were being diagnosed) and being 34 weeks pregnant. 

So the room became a blank slate. For months. And if you know me, you know this drives me crazy.

So....my goal this week is to finish up the projects in there and get it FINISHED!

Off to Joann's we go with our coupon and their Memorial Day Sale! Hopefully this will settle my ADD brain which will NOT stop "creating" things 24-7 in  my head. Ever since fundraising stopped....my poor brain apparently needs more stimulation than playing Little People and Peek-A-Boo.

One thing I do to keep my brain occupied is...take pictures of the babies...so here are a few! Happy Monday! Will you get some projects done this week?

HI!

Nothing like a boy and his doggie!

This is what every morning in our house looks like...living room, PJs and toys

MMMmmmm cinnamon rolls

Big boy sitting! He almost has this mastered now!

CHEESE!

This girl is full of life....can you tell?

Pretending to be a monkey

Clips that ACTUALLY stay in her fine hair!!

Check out those curls!!! (OK I may be a little jealous of my own daughter's hair!)

It's Methotrexate Night

For those of you reading this who have a child with JA, you already know what this post will be about. 


Last Friday was Esella's first dose of a medication called Methotrexate. MTX, as I will refer to it, is a chemotherapy agent that is widely used in the treatment of JA and adult RA (rheumatoid arthritis). Ironically, my dad was on this medication (in MUCH higher doses) when he was battling cancer almost 22 years ago. 

Esella's first bottle of MTX

MTX is in a class of drugs referred to as Disease-Modifying Antirheumatic Drugs, or DMARDSs. "These medications do not produce an immediate relief in pain or inflammation. but are believed to modify the natural course of the disease and prevent joint damage" (1). MTX is an immunosuppressant. This means that it suppresses the overactive immune system (hopefully) stopping it from attacking the joints. According to a review of JA treatments published in 2006 at least 2/3 of children with active JA are on some type of DMARD (2). 

So what are the side effects? Well...I mentioned it is used in cancer treatment, and yes it can have many of the side effects one would relate to going thru cancer: nausea, vomitting, hair loss, headaches, fatigue. Luckily Esella receives SUCH a low dose that we are hoping she will have little to none of these side effects. The nausea and vomiting, we were told, are more common in older children (higher doses) and that sometimes it is more of a psychological effect than a physical one. MTX is yellow....and we were told that some children/teen get to a point where they can't STAND the color yellow in ANY form.

MTX is generally given in two forms for JA/RA: pills or injections. There is a third option, which we are trying first, which is giving the inject-able medication orally. Every Friday Esella will have her MTX mixed in with a bite of ice cream. We are doing about an 8 week trial of it orally and then at her next rheumy appt on July 7th, we will discuss the progress and see if we will need to move to injections. 

Justin drawing the MTX out with the syringe

Putting the MTX in her ice cream (We did tell her there is medicine in her ice cream. We want to be as honest and open as we can be with her as this is HER body)

First dose of MTX. May 20, 2011

And yes, if we move to injections we will be giving them to her ourselves. Specifically, Justin will be giving them as I am not supposed to handle the medication as I am breastfeeding.

 As far as how her arthritis is doing? The knee continues to appear to be inflammation free (yay cortisone!!) however her right hand is not. She has two fingers that are actively inflamed (pointer and middle) and Justin and I noticed this week that the inflammation has gotten worse, and may be spreading to her ring finger as well. 

Swollen fingers

I also wanted to share with you all that a friend of mine's daughter, who is Esella's age (2 1/2) beat retinoblastoma (eye cancer) in September, though she lost an eye. Unfortunately the cancer has recently come back and spread and the out look is bleak. Her doctors say they have never seen cancer spread like this before and they are confused. She is a beautiful little girl full of life, just like Esella. If you have any spare thoughts, prayers, vibes, crossed fingers, please send them to Peyton and her family. I have been in a HUGE funk this week and I finally realized that a huge part of this funk has been the result of this dark pain that fills my heart when I think of that beautiful girl. We love you Peyton. Esella colored a picture for her and we sent it up to Canada (where she lives) where another friend will be putting together a scrapbook of pictures and letters for Peyton and her family. In addition, the Make a Wish foundation will be granting Peyton a wish! This organization is just amazing. 

In addition to the scrapbook...we are raising money to help the family. If any of you reading would like to donate, shoot me an email at TeamEsella@hotmail.com and I'll let you know how you can help. One of the things the money will be going to is professional photos of the family.

So...not exactly a happy post today, eh? Ha. Well...I promise the next one will be full of rainbows and unicorns ;) 

Until then, I'll leave you with some pictures of bath time that are sure to make you smile!

Have a great LONG weekend!!!

Luck?

I really should not be blogging right now. I mean, my ADD brain has like 381 different projects going on in my mind (examples? A video on JA, finishing the wall art for the kids room with their names, redoing some things in the living room to add the color blue {I'm into blue right now} ). Not to mention the daily, ho-hum boring but necessary things that I should be attending to around the house (laundry, dishes). 

Yes I SHOULD be doing something else but both my babies are asleep and all I can think about is how much I love them and how lucky we are. 

Yesterday I was at the mall with the kids. We ended up in our usual place-Nordstrom's Ladies Lounge- so that I could change a couple diapers and feed a hungry little guy. There happened to be another mother there feeding her tiny newborn son. She and her mother commented on how adorable Esella is (is it the curls? The way her face scrunches up and her big eyes disappear when she smiles?) and they asked me how she was doing with her little brother. 

They were surprised when I said she was awesome. They told me I was so lucky. That they too had a 2 1/2 year old daughter at home who was ready to be rid of her new little brother.

Is it luck? Luck that Esella holds Everett's hand in the car? Luck that the first thing she says in the morning is "Everett waking up! Hi Everertt! You OK Everett!"? Luck that she tries to help him roll over, showers him with kisses, and pretends to "eat him up"?

I don't know, but I am thankful to have such a sweet girl. One day, she will make an amazing mommy I think. She already is so good at taking care of her brother.

Reading to her little brother.

I guess we are lucky. Blessed. And maybe, just maybe, she got a little bit of her sweetness from her mommy and daddy. 

 

Say CHEESE!!

She is currently obsessed with the video camera. We just have a little flip cam...and she LOVES it. Today she made a video for "Grandma, GrammaB, Grandpa, YehYeh and C" where she sang her ABC's (kinda) and said "hi" everytime I told her to say "bye". 

Until Next time....If you start feeling down think about all they ways you are lucky too.

Everett

When you find out that one of your children is sick, chronically sick with a disease that can do a lot of harm and in some people can be deadly...your heart breaks in a way that honestly, NO ONE else can understand. They can try, but unless it's your child...it is not the same. 



BUT, now that the dust has settled somewhat, we just try to stay positive and keep on keeping on because...even though it felt like the world stopped for a while, in reality the earth kept going around the sun and we are blessed in SO MANY WAYS. Juvenile Arthritis is part of our lives but it does not define Esella or our family. 


You are probably reading this wondering "Um, I thought the title of this post was 'EVERETT'"? Why are you talking about JIA?

Because I realize that most of the posts since I started blogging again are about JIA, Esella and JIA, and JIA fundraising. But in reality....JIA is really NOT our whole life, and Esella is not our only child. We have this AMAZING little peanut named Everett who is hanging out right next to me as I type watching his sister play. And I want to brag about HIM a little today. ;)


After all, this blog is called Yeh Family Happenings, not Esella Happenings! HA!

So Mr. Everett...we seriously scored with this baby. He is the happiest baby. He started smiling at 3 weeks 6 days old (early) and NEVER STOPPED. 

Everett's very first "real" smile...with his Tai Ma! (Great Grandmother)

He is like...eternally happy. The only time he gets upset is when he is hungry, bored or tired (most of which can be easily avoided). 


OH and that damn carseat. He is NOT a fan of it. Which will make the 8 hour drive to Disneyland in June SUPER FUN! HA! 


He LOVES to just chill out on the ground and watch Esella play. I think Esella is his favorite person. He just LAUGHS and SMILES at her, and it starts the SECOND they wake up in the morning. 

Yes Everett LOVES his big sister. Developmentally Ev is doing GREAT. I think I mentioned in a previous post that Everett is LONG...94th percentile, and is very muscular. It is so funny how DIFFERENT his body is from Esella's at the same age. Everett can roll from belly to back, though he doesn't do it a ton (He really is quite content to just hang out) but the BIG thing right now, is that at only 4 1/2 months he can sit unsupported for up to a minute! He eventually falls over but yesterday he even sat for over 2 minutes! 

Everett, 4 1/2 months sitting unsupported

Esella putting a flower on his head. HA!

 He also is so different from Esella in that he puts EVERYTHING in his mouth!!! Esella never did that. He also reaches out to grab anything and everything he sees. 

MMMmmmmmmmm.

 As different as they are from one another...Everett loves to stand...just like his big sister did at the same age. 

He also loves going to the park and watching his sister play

Peek a Boo!

  Yes, we love our little man. He came into our lives at the PERFECT time! 

Well...time to make some lunch. Here is one quick one of our baby girl...I know Everett would want me to share it ;)

CHEESE!!

Just Another Day in our Lives

Every Wednesday (sometimes Tuesdays) Esella has physical therapy. Because of her age, it is play based. The activities are designed to strengthen her right leg and increase range of motion as both of these have been compromised by the inflammation in her knee caused by the JA. 

Every session begins by climbing up two flights of stairs. When going up, Esella works on stepping with her right leg first. She has made AWESOME progress with this and we practice daily on our home stairs. 

However, it is going DOWN that is the hardest. When going down, she needs to work on stepping with LEFT foot first, which puts all her weight on her right (bad) knee. This is REALLY heard for her, even after several weeks of therapy and home practice. But she IS improving. 

Esella actually loves going to "play with Elena" every week! Who wouldn't love jumping on trampolines, walking on balance beams and playing with fun toys?

Everett does his PT too...tummy time while watching big sis

Esella can actually scale this ALL BY HERSELF!

Balancing

One of her favorites...pushing the door open and then running away! HA!

 We have just a couple sessions left, and then we will have to do some home program to continue to build the strength and mobility.