Tuesday, November 30, 2010

Puzzles

Noah absolutely LOVES puzzles. He will take all the pieces out and put them back over...and over...and over...and over again. We've borrowed several from a good friend and Mr. Man just loves the feeling of success when he is finished.

Because of the puzzles, Noah has learned the names and signs of many animals as well as all major shapes. He knows circle, square, triangle, rectangle, oval, diamond, heart, and star as well as pentagon, hexagon and octagon.

He is now picking out the shapes all around him and pointing them out to me. In fact, we were grocery shopping a week ago and my Little Man showed me all the triangles he could find {and let me tell you...there are quite a few triangles at the market}. He's such Smart Little Stinkpot!

Here is Noah putting shapes in his shape puzzle...for the fifth time. It's a bit long, but you can see and hear how much Mr. Man loves his puzzles.
video

Monday, November 29, 2010

Stuffin' Muffins

Ok...so I know that most of the posts on our blog are about our adorable Mr. Stinkpot...but...I just HAVE to tell you about these.

Quite possibly the best Thanksgiving Leftovers Ever!

Ever!

I do believe they have changed my life!

That's right...changed my life!

I am not normally a huge fan of leftovers, but these, well lets just say my muffin tin has seen the inside of my oven more times in the past four days than ever before.

I did not take any pictures during the making, so you'll just have to imagine it.

The Jackson's Stuffin' Muffins


1. Chop one to two cups of leftover turkey and add it to three to four cups of leftover stuffing. Feel free to add a few tablespoons of gravy or cranberry relish if you desire.

2. Add a beaten egg to bind the whole mixture together.

3. Put a small scoop of stuffin' mixture in the bottom of a muffin pan. Add a large scoop of mashed potatoes to the center of each muffin cup and then cover with the remaining stuffin' mixture.

4. Bake at 350 degrees for 30 minutes.

5. Drizzle with gravy and enjoy!

These might just change your life as well!

Sunday, November 28, 2010

Twenty-Two Months

Mr. Man continues to do quite well after surgery. He gets stronger each and every day and we are pleased with his recovery. Noah's tummy is still quite sensitive...although he has not vomited in several days due to the fact that we feed him smaller amounts more frequently. The drooling, while starting to subside, is still quite apparent. Every time I change his bib, which happens about ten times a day, I call him Moist Boy. Noah gets quite a kick out of his new nickname.

Noah's current stats:

Weight: 31 pounds
Height: 33 1/2 inches
Don't those smiles just crack you up?!?

Saturday, November 27, 2010

Cousins

After eating tons of turkey on Thursday, we just had to get a shot of the cousins before bed. Nana got all the grandkids matching Christmas jammies {Cuz Jonah's are ready for him when he comes next month} that were so snugly and soft.

Noah, Brooklyn, and Hunter
Little Miss Brooklyn
Don't you just love cute little guys in their cute little jammies!

Friday, November 26, 2010

Food, Family, and Fun!

I hope your Thanksgiving was full of food, family, and fun! Ours sure was!!!

It was so much fun to see Noah and his Cuz Hunter chasing each other with Tonka trucks all around the kitchen! Don't you just love both their tongues sticking out as they concentrate on driving. Adam's deep fried turkey was awesome...enhanced by Nana's twenty-four hour brine. Yumm-O!
Now...let the countdown to Christmas begin!

Wednesday, November 24, 2010

Home

It's where the heart is and where the Jacksons are today!!!!!

We were given the go-ahead to leave Packard Children's Hospital yesterday and braved the long drive home in pouring rain. Mr. Man did great on the ride home and had the BIGGEST smile on his face when we walked in the front door. I think he must have taken all his toys out in the first ten minutes...just to touch them...remind himself that they truly exist...let them know he hadn't forgotten about them. It was too cute!

Noah is doing pretty well today. He still refuses to swallow any of his saliva and is a walking waterfall! We have gone through all the bibs I could find as well as two shirts. Hopefully he will learn to swallow again and the next four weeks won't be quite so moist.

Mr. Stinkpot also continues to vomit. UGH!!!!! We have decreased the amount of food he is given and are thinning it out quite a bit. We need to make sure he doesn't get dehydrated and that his body has enough energy to continue healing. He is getting medications every three hours around the clock to prevent infection, manage his pain, and hopefully, help settle his stomach.

We have so many things to be thankful for this year...way to many to count...but we are most thankful for our amazing family and friends who love and support us and our awesome God whose worth is beyond measure.

Monday, November 22, 2010

Food, Family, and dare I say it...Fun

What a day we have had! I forgot to tell you yesterday that after Noah's second surgery we were moved into a private PICU room. That's private people. No large room with three other kiddos in it. No ridiculous beeping from four monitors. No parade of doctors, nurses, residents, interns, and fellows coming through. Just a nice, private room that we can call our own.

Well...last night...just as we were getting our Little Man settled for the evening, we were surprised by a visit from my brother Adam, sister-in-law Melissa, and their kiddos Hunter and Brooklyn. How special!!!! They were on their way from Susanville to Fresno for Thanksgiving and decided to make a slight detour. It was so nice to visit with them and feel their love pouring out over Mr. Man.

This morning, after a visit from our MOST FANTASTIC Otolaryngologis, we were able to try giving Noah a bit of blue colored Pedialyte to see if he tolerated it as well as check to make sure he couldn't aspirate. After a nice slow start, we increased the amount he received and stood back. So far, so good. No coughing, no gagging, no vomiting, no aspirating. Yeah!

We soon got the OK to start Mr. Man back on his special formula {he can't get his homemade food while in the PICU}. Once again...no coughing, no gagging, no vomiting, no aspirating! Yeah! And can I tell you how HAPPY our Little Man was with a bit of food in his tummy. He sat in his crib for almost four hours, playing with toys that have been provided for us in the hospital.

Can you believe it?!?

He threw balls all over our room {including at the nurse when she was trying to take his blood pressure}, played with his reflection in a crib mounted mirror, read several books while getting a nebulizer treatment, taught Charlie how to jump out of the crib, quickly regretted that Charlie was no longer in the crib, and figured out how to turn on and off the music in another crib mounted toy.

Our nurse could not believe the change that had taken place in our Little Man. Finally...Mr. Stinkpot was on his way back!
Notice the river of drool pouring out of Noah's mouth. Ever since the second surgery, he has refused to swallow. Hopefully this will change, because, we have gone through three incredibly wet shirts in the past several hours. Either that, or Mama gets to pull out the cute bibs that Noah has never worn.

This evening, our MOST FANTASTIC Otolaryngologis came back in to check on his "most challenging case" and gave us the OK to be discharged tomorrow morning...pending a good evening.

Yippee Skippy!!!!!

Turkey and stuffing...here we come!

Sunday, November 21, 2010

Surgery Number Two

Our MOST FANTASTIC Otolaryngologist came in to see Noah this morning and decided that he needed to "plug" the stent to prevent any more aspirating. That would require another trip to the OR and a creative way to plug a plastic tube. Oh, pooh!

Kc had to come back from the hotel room {he has been taking the night shift with Noah and sleeping during the day} as we gave our Little Man a kiss and sent him back into surgery.

Right after Noah's initial surgery, the Otolaryngologist commented that Noah had, "quite possibly the most severe stage four subglottic stenosis" he has ever seen. Oh, swell!

Right before going into this second surgery, the Otolaryngologist explained that he has performed hundreds of these surgeries and has never had to cap a tracheal stent. In fact, he had to create a cap for both the bottom and top of the stent in order to fill it with silicone because they don't exist. Are you kidding me?!? Of course...Noah just had to be different. He had to challenge the system. Oh, great!

Well...the surgery was a success! The bran new stent caps worked and now Mr. Stinkpot cannot aspirate.

After the procedure, the Otolaryngologist said looking at the damage all the stomach acid was doing to Noah's newly reconstructed trachea was like watching the Titanic sink. Oh, crap!

Problem solved...sort of.

We now need to solve the initial problem of the vomiting. For now, Noah is still on IV fluids only. We will introduce colored Pedialyte tomorrow and keep and eye on everything. If he does vomit, we will be able to tell right away if the stent is completely closed by suctioning him and looking for color. Hopefully there won't be any! If Noah can keep the Pedialyte down, we will be able to start to give him formula. If he can tolerate the formula, we will be able to go home! Oh, yeah!

Please pray that Noah tolerates his feeds tomorrow and that we can get home in time for Thanksgiving...Mama just needs some stuffing and gravy!

Saturday, November 20, 2010

Pain down, food up

Noah had a relatively good night...with Daddy-O and the most phenomenal PICU nurse. At around 5:30 a.m., however, he started to cough up all the secretions that had built up in his lungs. The excessive and forceful coughing caused him to gag and then vomit.

Oh, no! I thought we were finished with that vomiting thing. Let's not start this again! Please!

Well...it did start again. Once Nana and I took over for the day shift, our Little Man had several coughing and vomiting sessions. Unfortunately, because the stent in Noah's trachea is open {like a plastic pipe} some of what he vomits comes out the trach. Not good! Not good, at all! The doctors have decided to stop Noah's feeds for right now and just give him IV fluids to see if that helps at all. We shall see...

On a happier note, Noah's MOST FANTASTIC Otolaryngologist says he looks great and has transitioned him off the Toradol and onto Tylenol and Motrin {alternating every three hours}. Mr. Man's pain seems to be only about half of what it was yesterday and he has even given me a few smiles.

We're still in the PICU and plan on staying here until we can get the vomiting under control. Thank you so much for the continued thoughts, prayers, and comments. We feel so loved and supported. Please pray for no more vomiting so that the Jacksons can be home for Thanksgiving {Uncle Adam is deep frying the turkey again. Yumm-O!!}

Friday, November 19, 2010

PAIN

It's been a very hectic thirty-six hours. We finally have a moment to breathe and are able to update you.

Yesterday morning, Kc and I arrived at the PICU at 7:00 a.m. and were told the doctors had stopped his fentanyl and were wanting Noah to wake up a bit. We spent the next twelve hours trying to comfort a little boy who was VERY uncomfortable. The doctors weren't able to keep on top of his pain, so our Little Man would thrash around and try to get up. All that movement caused quite a bit of secretions which he needed to cough out. The coughing caused tremendous pain to the incision site where they removed the rib graft, which in turn caused him to thrash around even more. It was a vicious cycle and no matter what comfort we tried to provide {pain medications, holding, rocking, singing, Charlie} it simply would not take the pain away. He kept signing "all done" and "go" which just broke my heart. Finally, at around 7:00 p.m. the doctors started him on a low dose of morphine. This seemed to cut the edge, but they had to increase the dose and give it more frequently to help settle Mr. Man. I went back to our hotel that night and Kc {the most wonderful Daddy-0 in the whole wide world} volunteered to stay at Noah's bedside.

Noah had brief moments of sleep {the first he had gotten since the fentanyl was stopped} but was still quite restless. Daddy-O spent the night trying to comfort Mr. Man while preventing him from crawling out of the crib, suctioning his trach, giving him Charlie, and rubbing his back. The most amazing Nana, who traveled up to Stanford with us, came in at 3:30 a.m. so Kc could lay down on the reclining chair and catch a few winks.

I got in at 6:30 a.m. and sent Kc back to the hotel to get some true sleep. Noah's doctor took him off the morphine and switched him to Toradol which seems to have done the trick. By 8:00 a.m. this morning, Noah FINALLY settled into a deep sleep and has been that way most of the day. He occasionally wakes up, checks everything out, cuddles Charlie close and then settles right back down again.

Thank you so much for all of your prayers. Please continue to pray that Noah's pain can be controlled and a good night sleep can be had by all.

Wednesday, November 17, 2010

One Small Breath for Man, One Giant Snore for Mankind

Today started out VERY EARLY!!! We woke up at 2:00 a.m. to be on the road at 3:00 a.m. to get to The Packard Children's Hospital in Stanford by 6:00 a.m. Noah, fortunately, slept most of the trip and Kc did an awesome job driving in the dark.

Once we arrived at the hospital, Mr. Stinkpot woke up and explored all the nooks and crannies of our intake room. He opened all the drawers and cupboards, danced on the exam table with it's crinkly paper, and charmed our wonderful nurse. Once the happy juice came, compliments of the anesthesiologist, our Little Man quickly went from Magellan to a brown bagger in front of 7-Eleven.

After four VERY LONG hours, our wonderful surgeon came out and gave us the great news. The surgery, while one of the "most challenging cases of stage four subglottoc stenosis" he has ever seen, was a success!

Praises!!!

Our Little Man was transferred to the PICU and kept under a heavy sedative to allow his body to heal a bit.
Snowed with Charlie.
Now that Noah's airway is open, he is starting to breathe through his nose. It was so exciting to hear him snoring. Such a simple sound that brings great joy! You have to listen very closely, over all the beeps, but you can just make out the raspy noises.

video
Thank you so much for your thoughts, kind words, and prayers. Kc and I took them with us and held them tightly today. This day is the first step along the long road heading towards trach removal...a day that we have been looking forward to for so long.

Saturday, November 13, 2010

Incarceration

We are t-minus four days and counting until Noah's B-I-G surgery and it is essential that our Little Man stay's healthy.

We had a bit of a scare last week. We took Noah into the pulmonologist because of excessive secretions, coughing, and a trach infection that simply won't go away with antibiotics. While at the office they recommended Noah have a chest x-ray to rule out pneumonia.

Are you kidding me???

Pneumonia???

Our Little Man CAN NOT get pneumonia right before a surgery!!!

We have had to cancel a surgery in the past because of pneumonia, I CANNOT do that again.

Fortunately, the chest x-ray came back normal and Mr. Stinkpot is good to go...so far.

We have decided, in an effort to keep Noah as healthy as possible, that he needs to be quarantined...incarcerated...in solitary confinement...just until the surgery.

Everybody needs to have a mug shot before they are locked up.
Behind bars! Locked up!
Don't forget to take your medicine.Only a few more days before we head over to Packard Children's Hospital in Stanford. We are filled with nervous anticipation. Please keep us in your prayers.

Thursday, November 11, 2010

And Now There Are Three

One of my old friends from college commented on my Facebook post about Noah's Two Charlies and told me she remembered my Raggedy Ann.

Yes...that's right...I took my Raggedy Ann to college with me. She laid on my bed every day and reassured me that even though I had procrastinated for weeks, I could write that ten page paper on the rise to power of Charlemagne which was due at 8:00 a.m. the next morning. She participated in many an all-nighter with me, helping me study/cram/write my way through school. She truly was a gal's best friend.

Last night, I decided that I should introduce Ann to Noah {as well as Charlie and Charlie Two}.
Ann is quite a bit bigger than Charlie and Noah definitely did a double take when he first saw her. He slowly signed "Charlie" and grabbed her by her hair. He INSISTED on taking her to bed with him last night and even tried to shove her through the slats to get her into his crib.

Today, during Noah's nap, I went in to put a blanket on him and this is how I found him.
I think we've created a monster!

Wednesday, November 10, 2010

My Two Charlies

Shortly after Noah fell in love with Charlie I might have mentioned to Nana that it would be a good thing if we had a "back-up" just in case something happened to the original.

I might have told her that Noah loves to run his fingers through Charlie's hair and pull out the yarn {we now have Rasta Charlie}.

I might have told Nana that Noah hates Charle's Peter Pan collar because it gets in the way of his face.

Well...Nana is not one to disappoint and a week ago she introduced us to Charlie Two.He is definitely an updated model...hair intact, seams intact, face clean, Peter Pan collar and stench removed.
After the initial introduction, Noah would have nothing to do with Charlie Two. He would sign Charlie, shake his head NO, and then sign Charlie again. After several days, however, Noah came to tolerate the New Charlie. He still knows the difference between his beloved Charlie and the Newbie, but he loves to have both around him. In fact, he now INSISTS on having both Charlies with him at bedtime. Too cute!

Sunday, November 7, 2010

Noah and the Lion's Den

Noah absolutely LOVES lions. He learned very early on how to sign "lion".He has several lions that he carries around the house where ever he goes. Kc calls them We Three Kings.
One of my students gave Noah a HUGE lion that he absolutely LOVES.
Here's one little King of the Jungle surrounded several others.

Our Family

Our Family

Daddy & Noah

Daddy & Noah

Kc & Rebecca

Kc & Rebecca

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