Medical Updates

The past two weeks have been VERY busy for the Jacksons. Noah has had five doctor's appointments {two of them out of town}, we have gone on two mini weekend vacations, and have had countless play dates and BBQs with family and friends. Here are some updates on what we learned at the doctors appointments.

Plastic Surgery:

Noah's hands continue to heal quite nicely. They were wrapped continuously for two weeks post surgery. After those initial two weeks, we unwrapped his hands nightly, gave him a bath, let the hands dry out, and then wrapped them back up. As of his appointment last week, Noah's right hand is doing excellent and doesn't have to be wrapped any more. His left hand has a bit more healing to do and needs to continue to be wrapped. Although, as you can see from pictures in previous posts, we've taken liberties in how long we let his hand "dry out".

Ophthalmology:

Last week, we headed down to Children's Hospital Los Angeles to see Noah's eye doctor. It was a LONG trip but Noah did well in the car. The Dr said Noah's left eye continues to look good and so we're going to continue his current eye drops. He also decided that Noah needs glasses. While Noah is a bit near sighted, the primary reason for the glasses is to protect his eye from possible injury. Because he's only got one, we need to do everything we can to keep it safe. We have ordered the glasses {very cute plastic children's ones} and they should be here in the next week or so.

Otolaryngology:

After Noah's last scope of his trachea, our ENT Dr referred us to a specialist at Children's Hospital Stanford. We drove up to Stanford yesterday, and once again, Noah did quite well in the car. We met our AMAZING Dr and were quite impressed with the clinic. The first thing they did was stick a long camera down Noah's nose straight into his trachea so they could get a good look around {while he was awake}. Needless to say, Noah DID NOT like this. The first thing the Dr saw was how large Noah tonsils were. "Those have got to go," he exclaimed. He was also able to see that Noah's vocal chords were "trying" to move while he was screaming and crying. "Very encouraging," he said. We discussed the MAJOR surgery to re-build Noah's trachea and possibly take out his trach. There is about a 70% success rate with severe cases like Noah. We head back up to Stanford on September 8 so the Dr can do his own scope and take out Noah's tonsils and adenoids. At that point, he will be able to make a plan whether or not to proceed with Noah's laryngotracheoplasty.

I am so blessed to be on summer vacation and not have to take days off work for all of these appointments. While I would much rather be a SAHM {stay at home mother}, I have to give thanks for the job I have, the flexibility it allows us, and the health benefits it gives Noah. We've got some major surgeries ahead of us, so I'm hoping to make the most of this summer and have as much fun as possible!

Trying to Levitate

As you know, Noah DOES NOT like the sand. He HATES how wet, cold, and crumbly it feels under his feet. What kind of parents would we be if we didn't push him into sand every chance we get?!?

While up at Huntington Lake, we headed down to the water so that Sierra could do a bit of swimming. While Daddy-O was throwing the stick in the lake {over...and over...and over again} Noah and I played in the sand. He practiced his levitating abilities while I practiced not laughing too hard. Our Little Stinkpot, while he has not yet mastered levitation, has stolen our hearts and makes us look forward to tomorrow. Here's to many more tomorrows!

Fourth of July

The Jacksons were blessed, once again, to be able to spend the Fourth of July at Huntington Lake. Our very generous friends let us use their cabin to get away for an extended weekend. We were able to play at the lake, read on the deck, bbq an amazing pork tenderloin, take naps in front of the fire, and spend quality time together as a family.

Sierra was in hog heaven being able to swim in the lake, lay in the sun on the deck, and smell all the wonderful smells in the forest.Noah and I had fun watching Daddy-O throw a stick in the lake for Sierra to fetch...over...and over...and over again.Noah LOVED playing on the deck. He pushed a Tonka truck all around, filling it up with toys and dumping them at opposite ends of the deck.He also loved to bring toys up onto the dog bed and throw them off.I had so much fun just watching my Little Man play.When inside, Noah loved to throw any toy he could lift over the rail under the bottom of the kitchen table. At one point, Charlie even made it over the rail.

We had such an awesome, relaxing, chilly weekend. Thank You!!!

Playing

With his arms all wrapped up, it is very hard for my little Stinkpot to play with most of his toys. Yesterday, I found him playing in the bathroom with the toilet paper roll.
What?!? I was just playing!

Bath Bags

Noah is not allowed to get his fingers and arms wet which makes bath time a bit of a conundrum. After several days without a bath, our little stinky guy was in desperate need. We decided to wrap his arms in zip-top bags and tape them securely.
Mr. Man DID NOT appreciate our attempt at keeping his arms dry. I don't think I have seen Noah cry this much during a bath since his very first one after being born.
We see the plastic surgeon on Friday and hopefully the wraps will come off and my little Stinkpot can have a proper bath.

When Mama's away...

...the boys get together to play.

As the story goes, Charlie tried to convince both Noah and Daddy-O that they needed to get tattoos...just like his. Daddy-O was unsure of having such a large tat on his chest and Noah thought putting I LOVE NOAH on his chest was a bit strange. Someone commented on how Noah's wrapped up arms remind them of Popeye the Sailor Man and I guess one thing lead to another...
When I got home from Portland, I was picked up at the airport by Charlie,
Daddy-O,
and my little Noah Man.
I am so glad my guys had a fun weekend together but I'm a bit nervous to see what they do the next time I leave them alone.

And...yes, there will be a next time. Not only did I did survive a night without my boys, I actually had a FANTASTIC time with Amy, Brian, Owen, Grace and family. I might have to get away again soon.
Noah's not quite sure about that.

All Wrapped Up

Well...here they are...as promised. Noah is all wrapped up, from the tips of his fingers to just below his elbow. Last night was still pretty rough {or ruf} because every time Noah moved around, he would inevitably hit or roll on top of his hand and wake-up in tears.
The only thing that gives him comfort {aside from sleepy cuddles from the parental units} is his Camo Charlie. Kc and I have been trying for over a year to find a "lovie" for Noah. Early on, Noah was never far from his Wubba {pacifier}, but as quickly as that love affair started, it abruptly ended. We have subsequently introduced Noah to various blankets, stuffed animals, dolls, trucks, cars, whatever we throw at him, without any luck. He never took any interest in anything...until Charlie.

When I was a little girl, my Mom {AKA Nana} made a Raggedy Ann doll for me. She even embroidered I LOVE BECKY on Ann's stomach. She has subsequently made Raggedy dolls for many other family members...accept for her very own third child...sorry Drew. When all three grandsons were together last week, she presented each boy with their very own twenty-first century Raggedy Andy on steroids - Camo Charlie.
Charlie has the fiercest camouflage shirt {with a Peter Pan collar} and wicked black shorts over forest green striped socks. His chest is even tatted with each boys name. Once Noah was introduced, it was love at first sight. They have been INSEPARABLE since then.

Charlie was able to accompany Noah in the operating room on Monday and we knew they were looking out for each other. Once we saw them in the recovery room, we recognized that they were two Bandaged Brothers. The nurses had wrapped Charlie's hands just like Noah and had even given them matching booties. Too cute!
I look forward to seeing the relationship between Noah and Charlie unfold...and to more sleep in the nights to come.

Ruf

Ruf...that describes yesterday perfectly...ruf! Let me back up and start from the beginning.

At six o'clock in the morning, the Jacksons arrived at Children's Hospital...bright and early and ready for surgery. Here is Noah, just hangin' out, wearing his cool gown, and relaxing on his gurney. The first procedure Noah had was another scope of his trachea. After only forty-five minutes in the OR, the Dr. came out and showed us pictures. He, once again, looked at it from the top through Noah's mouth as well as from the bottom through his trach hole. The Dr. said Noah's case is quite challenging and he would prefer to send him to the Children's Hospital at Stanford to have the tracheal reconstruction. We are eagerly awaiting a call to let us know when our first appointment is.

Once the ENT left the OR, Noah's plastic surgeon came in and proceeded to separate the syndactyly {webbing} between his middle and ring fingers on both hands. This was an incredibly tedious procedure, because once the Dr. separated the fingers, he had to take skin from the side of Noah's palm and graft it onto each newly separated finger. This second surgery took over three and a half hours, but we were thrilled when the Dr. came out and told us everything went well.

Noah spent about an hour and a half in the first recovery room before being transferred to a room where we could see him. Our little man was in QUITE a bit of pain and spiked a fever of 102 degrees. We spent several hours holding our "drugged" Stinkpot before we were allowed to take him home. Once home, however, the excitement had only just begun.

After spending almost eleven hours at Children's Hopsital, we were relieved to finally be home. Noah was still in a tremendous amount of pain and, although taking Tylenol with Codeine, he had trouble sleeping. He was up every hour to hour and a half needing some cuddling and loving {and additional drugs} from his Mama and Daddy-O.

Hopefully tonight will bring a better nights sleep for all three of us and I promise to post pictures of our Little Man all wrapped up tomorrow.