Noah...may the force be with you!

His favorite color is green…but The Hulk?

ambernoahsmom — Mon, 30 Jan 2012 13:57:39 +0000

Last Tuesday, Noah and I went to the hospital to have a scan done to see if his ommaya reservoir (port that goes into his brain) circulates as it should (through his entire CFS – to his spine, etc.) This test is for the Houston treatment. We were told that he would have to lay down for 3 to 5 hours and we thought “no problem – we’ve done that before in Shands.” I didn’t know that he couldn’t move at all – no rolling from side to side, no going to the bathroom (Thank goodness for the plastic urinal!)

The process started with a trip to the clinic to have labs. Just looking back, and reminding him, that this used to take up to 5 nurses and an hour of kicking and screaming at the top of his lungs. Shaking, vomiting, more screaming… on and on… Now…”Good morning! Where’s the needle? Porty and I want the needle!”

We get our blood work and head down for the scan. “Mom…I think I’m bleeding.” Blood was pouring down his side; we sprung a leak out of his port. His platelets were super low and we didn’t use a bandaid. Back up we go! Clean up and we leave with a bandaid.

So…time for the pictures. This one took me a little by surprise. Ready? I knew that they were putting dye into his ommaya reservoir, but what I didn’t know was that it was radioactive. Yes…radioactive isotopes…yes…just like The Incredible Hulk, “but not as many” they joked. What can I do but pray. God is always in control and he and I talk all day long. Sometimes laughing, sometimes not.

I gave Noah a fortune cookie for the first time. “Mom, you’re telling me that there’s a message in the cookie!” Mine said “It is best to consult others before taking unusual actions.” I was thinking…Like right now???? Noah’s said “Others seek your courage.” Took my breath away a little. Everyone involved was really wonderful. How they do that daily… beyond me, but they do receive our prayers daily!

He laid there, got a needle in his head with Hulk serum and, of course, watched Star Wars all day – with him comparing himself to Anakin, the good Anakin. They wanted him to be completely flat and the bed didn’t have a level; thank goodness for Dad telling me about an app! He held still for a hour, then another hour, then another, then another, then… off to the Lego Store at 6pm!!!!

This morning, we have an MRI at 10. Please pray for my sweet, sweet boy. Dear Heavenly Father help us today.

Thank you for your prayers!

Noah says we have a ghost!

ambernoahsmom — Thu, 19 Jan 2012 04:45:30 +0000

“Dad we have ghost!!!” (Silly Baby Boy – He took these!)

it’s Tuesday…again!

ambernoahsmom — Tue, 17 Jan 2012 19:24:58 +0000

Some mom’s get up, pack lunches and send their babies off to school. I send mine to clinic. So strange. I have meetings all day, so the most amazing Dad in the world took 2 babies to the hospital and will entertain them all day. Landin will be the doctor and cheer while Noah gets accessed and infused. Once again… so strange.

Everyone is fine and everyday is a blessing. When it’s cold, Noah hibernates and his fingernails turn blue; I’m ready for 90 degree weather. We are still sleeping on the floor in a backroom…”camping-out”… going on about 8 weeks! (Maybe a world record!) Things are good and we are blessed!

Can’t wait until Tuesdays are over. See you soon my brave babies!

Never know what’s going to get you

ambernoahsmom — Sun, 08 Jan 2012 03:11:52 +0000

As I was doing a little cleaning today, I came across a “birthday gift discount card” from Anthropology. They send these out and you get a discount in the store during your birthday month. They are always designed so well and I love the store.

Look what this one says…

Wow. Dennis’ birthday is in June. Whole new meaning!

Our Comic Relief!!!

ambernoahsmom — Sat, 07 Jan 2012 03:53:45 +0000

Wow. Tonight was snuggle movie night. We are all camping out in the back room on the floor. The movie is on… Noah is wrapped around me – eating apples!!! (Praise God!!!) And all of the sudden… “Mom!!!!!” Eruption! Noah stands and vomits everywhere!! I run to get the bucket! Dad uses his shirt… as the bucket!!! (This was the man that couldn’t change a diaper!!! God bless you Dennis!!!)

Ok…some got on the floor…ok a lot…more on Dad! The movie is paused. Dennis and Noah are heaving in the bathroom. Lulu and I are cleaning the carpet…”Mom…get your phone…I have something to say!” Welcome to our comedian!!!!

Happy New Ears!

ambernoahsmom — Fri, 06 Jan 2012 04:35:57 +0000

Happy New Year! And New Ears.

I am growing as a person and as a Mom everyday… even if I don’t want to. God give me the strength.

My darling, amazing, think everything is “awesome” son has given me lessons beyond his years.

Noah and I went to get his hearing aids today. He was great with it…Me? Hummmmm.

On the inside, I was so mad, heartbroken, disgusted at archaic chemo taking my precious son’s hearing. The boy who has a signed picture of John Williams on his wall. The boy who has been made sick for 2 years trying to fight for his life!!!! And oh… by the way, on top of EVERYTHING else “he’s going to loose his hearing…we don’t know how much.” Just one more thing stolen from my beautiful angel.

On the outside, “Noah, those are so cool! They look like Com links!! (Star Wars/Clone Wars.) He thought they were great! And… because he can hear me whisper “I love you” … I do too.

They are green…his favorite color. They are Star Wars cool…his favorite thing. We walked to the car and I told him to tell me everything new he could hear! I started the car and as a surprise hit play on the theme song to Star Wars! His smile was SOOO BIG!!!! I can hear everything!!! We conducted and sang the soundtrack all the way home!

ps. I told Maryellen tonight that I am writing a book (so consider this a copyright.) Title: “I can explain ANYTHING with Star Wars!” Hearing aids, radiation, surgery, infusions, mechanical implants in your head, good, bad, life, death, the force (Heaven)… EVERYTHING! I’m going to ask Mr. Lucas for permission. :-)

Dear Heavenly Father, help me learn; lend your hands to our researchers for these children. Amen.

Goofy boy!

Special Prayer for Marlie & Sarah

ambernoahsmom — Tue, 03 Jan 2012 02:50:28 +0000

Hello all and Happy New Year.

I just wanted to give a quick update and let you know that sweet Marlie went home to be with our Lord on New Year’s Eve. Please pray for Sarah and her family. Sarah has written her updates so beautifully, with Grace and such strong faith. She gave me strength from afar when I needed it, now I ask that you pray for her.

Thank you and God Bless - Amber

__________________________________________

Heavens Gates

Posted 1 day ago

Hello Team Marlie,

I can only imagine every beautiful color, from every sunset we shared together was in heavens sky last night. I imagine little Marlie ran with grace and joy to the arm of Jesus, then rocked in the New Year with her Papa. I imagine this was the first year she stayed up it till midnight! I can imagine my girl is as happy, comfortable and whole as she walks the streets of gold. I imagine she is wearing the crown Jesus made for her, and I imagine her castle is as perfect as she was.

I can only imagine these things; I will only truly know when I get to see my baby again.

Faith has carried me through Marlie’s physical world, and by Faith I will remain strong in believing Marlie was carried to her spiritual world, where she can rest, and spend eternity with Jesus.

Sweet Marlie ran into the arms of Jesus last night at 8:45 pm.

All of my love Team Marlie,

Sarah

Merry Christmas! pt 4 – Noah on the mic!

ambernoahsmom — Fri, 30 Dec 2011 15:43:04 +0000

Noah… a princess microphone…and a speaker. How he knows Herbie Hancock? I don’t have any idea!!!

Merry Christmas! pt 3… (This is going to on for a while :-)

ambernoahsmom — Fri, 30 Dec 2011 00:36:11 +0000

So… once again…I designed a card and didn’t sent it. Probably ok… being that everyone I care about is reading this right now so….

Merry Christmas and God Bless You!!! from The Larkins

(Thank you Terri!!!)

Merry Christmas! pt. 2 – Santa is real!!!!!

stinkyflowers — Thu, 29 Dec 2011 15:07:27 +0000

Dad picked us up from the airport and off to dinner at Noah’s favorite, California Pizza Kitchen! (Lu is so sick of it, I have to go to Panera and bring hers into the restaurant.)

As we told the stories from Birmingham, I thought…we are at the Millenia Mall, let’s see if we can do pictures! (Sorry to break this to everyone, but this is one of the only stops that the real Santa makes to take pictures.)

We finished dinner and headed down to the village where “millions” of children were waiting. When it was our turn, Landin and Noah walked towards Santa and he said “Good to see you Noah!!! And look how big you and Landin are getting!!” Noah turned back to me and almost fainted! The kids eye were HUGE – and frankly, so were mine.” I asked Dennis “Did you tell them their names?” He said “No!”

Santa went on and on, asking about his Legos, Star Wars, Landin’s princess birthday…. we were shocked as were they!!! At the end of the pictures, Santa grabbed Dennis and asked if “the kids enjoyed the message?” Dennis got the biggest smile I had ever seen!! Way back in June, we got a message on his cell phone from Santa!!! It was crazy!!! It was him!!! (And we really don’t know how he got Dad’s cell number!) Welcome to our “Miracle on 34th Street!”

Thank you Santa! For your prayers and your kindness! And I thought you just kept a list…I didn’t know you subscribed to blogs as well!!

May God Bless you all and to all a good night!