Farewell 2012 and Hello 2013! Much needed...Update!

2012 was one hell of a roller coaster.  I need time to heal from everything that occurred but Kenji's my primary focus right now.  I will get my time once Kenji's health and medical condition is under control.  I hope 2013 will bring nothing but health and prosperity to everyone... especially Kenji.

So my last post, Kenji was still in the hospital being treated for Staph.  We were there for about a week then was discharged home and to continue his antibiotics every 6 hours at home.  Well, not even a week and we ended back in the hospital again when he spiked a temp of 103 again.  Labs and cultures were done and he was put back on multiple antibiotics again.  Come to find out, this time around, he has a yeast/fungal infection.  With this being his 2nd line infection within less than a month, his broviac needed to be pulled.  So, Kenji was transferred to the PICU, sedated, picc line inserted and broviac pulled.  After he was stable he was transferred back out on the floor.  Kenji spent Christmas and New Year at Presby Hospital in room 212.  A week passed and his cultures were still positive for yeast...and now Staph too!  His Picc line had to be pulled now too in order for the antibiotics to clear the infections so 2 peripheral IVs were put in...one in his neck and one in his right hand (that didn't last but a day) and now in his left foot. 

Due to the circumstances, our PA trip was once again cancelled bc the Peds are saying we will be here for a good 2-4 weeks.  A new date has not been set as of yet.

Pleaaaassseee...say a prayer for my sweet boy.  Thank you!
I'd also like to thank our nieces and nephews for spending the holidays with us at the hospital.

Merry Xmas from Kenji!

Happy New Year's Eve!

Emergency Room

It's quiet and I'm filled with bordem and stress so blogging is the answer.  

Sorry for my lack of posts on here but I've been tremendously busy.  I usually do a weekly post on Sundays summing up our week but this past Sunday was my SNL's babyshower and I was occupied all day assisting with cooking and cleaning.  I have also been busy with a little Christmas shopping and most importantly, planning our trip to PA.  I purchased our flights already and we'll be in PA from Dec 17-21.  

Anyways, I ended up having to rush Kenji to the ER when his temp was 102.7.  With that smiling face, I would have never known if his body heat was not burning me up and then the thermometer confirmed it.  The ER drew labs and started him on antibiotics immediately.  With Kenji being at risk for a line infection, he was admitted and will be in the hospital till there's firm results.  His blood culture came back positive but nothing specific yet.  Please pray for my sweet boy.

Kenji was not going to let a temp stop him.

 

Thanksgiving + Black Friday Shopping

I hope everyone had a wonderful Thanksgiving and a safe Black Friday(if you were one of the "crazy" ppl who went out like me).  

Kenji and us had a great Thanksgiving filled with lots of yummy food, talks and laughs.  

Here's my "Thankful" List:

I'm thankful for Bill, my husband. Thank you for loving me unconditionally regardless of what I've put you through.
I'm thankful for kenji, my bundle of joy and miracles. Thank you for being strong...for beating the odds...for being the apple of my eyes. 
You're the best thing ever!I'm thankful for the 15 hours Benjamin was here on Earth...thankful for 

being able to embrace Benji during his last breath. You'll never be forgotten.
I'm thankful for my family. We have our differences but I wouldn't trade you guys for the world.
I'm thankful for friends near and far.
And I'm still being serious here...I'm thankful for makeup, nail polish and kdramas. Without you guys, I will die of boredom. Lol

Now onto what Kenji's been up to...

He's starting to roll more now.  He not doing much of back to front yet but he's making progress.

He's getting better at being entertained with movies, singing, etc...  It's almost the only time he will tolerate "tummy" time now.

He loves being talked to and when mommy & daddy makes funny faces at him.

This is one of the last 2 NB outfits that still fits him.  *sniffs*  My baby is growing up.

"There's not a thing that I would change 'cos you're amazing just the way you are..."

And here he is wearing a 3M outfit...he still has room to grow into it but he'll get there in no time :)

The face he makes when he gets overly excited with his hands/fingers...LOL

A clip of him...on a good morning that is!

A Thousand Years...

Looks like Sunday nights are the only time I get to blog!  But that's ok...bc *sarcastically* nothing interesting ever happens with a SBS child who's on 24 hours of TPN.  Yeah, our lives are pretty boring...

NOT!  LOL

Anyways, Kenji visited the Ped on Monday and got 3 shots including his 1st synagis vac.  He took them like a soldier!  He didn't cry till after the 2nd shot but just for like 30 secs.

He weighed in at 8lbs 13oz as of 11/12/2012.

He has been quite fussy since his shots so I called PT and OT off this week to give him a break.

This week, Kenji has started to become "possessed" in the late mid-late mornings.  He will cry on and on and on...I think it's due to boredom.  I think he can't stand staring at a white ceiling and pink walls for longer than 1 hour.  LOL.  

So, this is what I call "possessed".  LOL

 So, I learned a lil trick!  hehee :D

And this is him NOT "possessed".

This week we did some pretty fun things.

Kenji is baby talking/cooing more now.  His grip is definitely getting stronger.  He's not only reaching out for his toys but grabbing them too now.  He's smiling/giggling more now.

Friday night, Auntie babysat Kenj so we could go out on a date.  We went to watch Breaking Dawn Pt2.  And after that movie, I fell in love with this song

 

"I have died everyday waiting for you.  Darling, don't be afraid.  I have love you for a thousand years.  I'll love you for a thousand more."

It's so perfect for my little miracle...my biggest blessing...my one and only, Kenji.

Saturday was a funny day.  We attempted to go to the mall 3x.  Each time we packed Kenji up and started heading for the car, his pumps would go off and we would have to unpack him and see what's wrong.  But we finally figured out what was wrong after like 1 hour and finally made it to the mall.  

Today, Sunday, we made it to cousin Tydon and Jason's bday party but Kenji slept half the time we were there.  While all the other babies were fussing or what not...Kenji was "the" good boy.  He didn't make a peek.  He was alert and looking around but you wouldn't even know he was there...unless his TPN monitor went off!  LOL

Kenji also made it back to the mall today(we are getting ready for our trip to Pittsburgh).  This is how he was while being strolled around...  O_O

LOL...he was so amazed at all the lights.

Weather has been burrrr so Kenji couldn't go out without being bundled up.  I told everyone he reminded me of the lil kids from Southpark and that he's the new addition to Southpark and his name is Marshmallow. LOL

Kenji completes us!

Quiet time...

I know it's been awhile since I've blogged but it's not easy to get free time when you have a child who needs 100% of your time, love and care...and who would want to be apart from this face!?

But daddy snatched him from me to cuddle...laundry is being dried...the rest of the clothes is put up...room cleaned...and I don't want to do my nails...so here I am!

This weekend was busy...for Kenji that is.  I took him shopping with me all day Saturday.  He loved the car ride till the last hour.  Then he started fussing and when we got home...he smiled.  Such a smart boy.  Sunday, we went out of town all day.  We brought Kenji to meet my extended family.

Don't he look so grown?  He appears to be "big" in pictures but really...he's still little to me.  I guess bc I see him everyday.  As of last Saturday at the Peds, Kenji was 8lbs 8oz.

 Here he is with his cousins.  They love Kenji so much and couldn't get enough of him.

Oh, we're actually going to Pittsburgh on 12/3 and will be there for the week.  We are still working on transportation for him and us.  We have looked into Miracle Flights for Kids and still waiting for them to get back to us.

As far as PT and OT, Kenji is working on rolling over now :)

The date has been set

December 5 is the day!  

All the kinks has not been worked out as far as transportation or housing/lodging or what not but we will leaving for Pittsburgh on Dec 5th.  We will be there for 5 days total.  Not really sure of what to expect yet but we're ready for it...I think...LOL

My silly boy loves to sit and be held in awkward positions.

As we were taking pictures he grabbed a hold of my phone charm.  He's exploring more now :)

Happy November

Wow, how the time flies.  It'll be 2013 in a few weeks.  Kenji has been well.  We didn't do anything for Halloween but stayed warm inside.  Kenji slept most of the day anyways.  It's still too early for me to take Kenji out just yet.  As I told him I'll take him trick-or-treating next year, he touched my cheek and pinched it...LOL  

He had a cranial ultrasound today and we are waiting on the results but as far as I know...it's still stable...no change.  

It also looks like our time to going to Pittsburgh for Kenji's transplant evaluation is getting near.  Hopefully everything will be coordinated by the end of the month so we can head up by first week or two of December.