A day in Washington DC...

We went to Washington DC back in the spring for a much needed family break (and birthday get-a-way for big brother)! We did ALL we could in 4 days. Drake trucked along and enjoyed every minute of the cold, the rain, the subways, the museums, the driving... but being together, out of town was just what the doctor ordered!!!

Drake Naylor from a year of life...

Here I am after an ENTIRE year of not blogging about my sweet sweet boy trying to play catch-up in one lump sum of pictures!!! They might not be in order... but none the less, they are cute!!!

Something make me laugh... notice the lady in the background NOT laughing!

This picture is from Drake's 5th Birthday... MY ALL time FAVE pic of him...EVER! I even enlarged it and framed for his room. It truly shows his love for Sock Monkey's, a beautiful day and LIFE!!!
This is what my boys were for Halloween, the cutest baseball players in town. Grant decided he wanted to be a ball player. With a little help from Ebay for his official NY Yankees jersey, and very little help for Drake, I decided to pull out the crafts and get the BEST baseball costume for 2010!!!
This is a picture from one of Drake's PT sessions this past summer... Mrs.M has been with Drake since he was 4 months old! Gotta LOVE her for her passion for these kids!!!

Look what my BIG boy made for me & Shane for Christmas... so DANG sweet and I will cherish forever!!! Thanks Mrs.K & Mrs.C at Gateway for an extra special gift!!!

Need I say more? Hope ALL your dreams come big boy!!!

5th Annual Drake Naylor Invitational

C-Diff

Well, what can I say... I haven't posted on Drake in so long because we have been flying under the radar. Frankly it's been quite nice to not be so focused on doctors, hospitals specialists, nurses, well... you get it! So with that said, here's a quick update!

Drake has acquired a "little" nasty batch of bacteria called C-Diff:

WebMD Health News
May 30, 2008 -- While bird flu and MRSA have been making headlines, a dangerous strain of C. diff has been making people sick in 38 U.S. states.

C. diff sickens about a half million Americans every year, and every year the epidemic gets about 10% bigger, CDC medical epidemiologist L. Clifford McDonald, MD, tells WebMD.

Bigger -- and more deadly. The death rate is soaring by 35% a year.

From 1999 to 2004, the bug became four times more lethal, with death rates increasing from 5.7 per million Americans to 23.7 per million Americans in 2004. During one hospital outbreak in Quebec, Canada, the one-year death rate hit 17%.


C. diff disease can range from mild diarrhea to life-threatening colitis. The bug produces toxins that destroy the mucosal lining of the gut.

There are many different C. diff strains circulating in the U.S. But since 2000, one of these strains has gone from a minor player to become the most frequently isolated C. diff strain. The strain has several names. Referring to its genetic fingerprint, the CDC calls it NAP1. In Europe and Canada, it's often called the 027 or BI strain.

The NAP1 strain of C. diff took off shortly after it acquired resistance to fluoroquinolone antibiotics. There's some evidence it may also have acquired some resistance to Flagyl, one of the two antimicrobial agents used to treat it (the other is vancomycin).

Antibiotic resistance isn't the only worrisome thing about NAP1. C. diff normally makes two toxins. The NAP1 strain makes 16 times more toxin A and 23 times more toxin B. And it also makes another toxin, called binary toxin, although it's not yet clear how this toxin affects humans.

A recent report shows that adult C. diff hospitalizations doubled between 2000 and 2005 to about 300,000 hospitalizations a year. That's more hospitalizations than are seen with MRSA, which sends about 126,000 Americans to the hospital each year.

The CDC's C. diff expert, L. Clifford McDonald, MD, tells WebMD that if you count pediatric C. diff cases and cases in the community that do not enter the hospital, there are probably half a million U.S. cases of C. diff infection each year.

And yes, it is an epidemic: The infection rate is going up by about 10% a year. But the death rate is going up even faster, says Marya Zilberberg, MD, adjunct professor at the University of Massachusetts, Amherst, and president of the EviMed Research Group.



So with all that fancy, scary, dis-heartening news... Drake in on his second round of hopstial visits and second round of antibiotics. What do we do next? That's a good question!!! He is losing weight as I type (6 pounds in 6 weeks). That's not good for someone who is only 29 lbs to begin with!!! The docs have mentioned TPN.

TPN stands for Total Parenteral Nutrition. This is a complete form of nutrition, containing protien, sugar, fat, and added vitamins and minerals as needed for each individual. It is admininstered through an intavenous infusion, usually using a central line. A central line is a special long lasting IV line that goes through a vein directly to the heart. It is usually placed on the chest, though sometimes if the location must be changed frequently it will be placed in other areas such as the groin or the neck.



Drake continues to have severe vomiting, diarrhea and possible stomach cramps. Mommy here is going to suggest the possibility of a new formula, colonoscopy and what are the chances he has Nora-Virus on top of all this fun? Not sure where this day will take us, but I do know I have the bravest little guy with the biggest spirit and a smile to make all the "mommy tears" disappear!!! As Lance Armstong would say, "Live Strong".

We can't begin to say thanks you to all who have already showed their support for Drake and our family during this debacle. Facebook has been a real time saver on getting updates to people (except those who haven't joined the FB train). Please take a moment to read the post my sweet friend MJ wrote!

And the story continues...

The ABC's

Look what Drake is learning in school!

Head Games...

Dr. Neuro decided to try an ambulatory EEG on Drake. D- would be the youngest patient they had tried this test on. It was an effort to try and keep from going and spending SEVERAL days in the hospital... again. This particular doctor never thought Drake was having seizures, but I was insistent to try something or we were heading to UNC for a long stint (which I would be glad to do if I thought there wasn't something to do here first). He never had any doubts that these "episodes" weren't seizures, he just didn't have a clue what to tell me they were.





We had the opportunity to come home with the EEG test box for 48 hours. With an hour's worth of leads being glued and lots of crying to boot (both Mommy and Drake), 3 trips back to the office to have them reapplied, and every minute being on constant watch to make sure if he had an "episode" we could punch "the button" (this would send a signal to the recording box that there was a moment we saw)! It all seemed a pain, but SO MUCH BETTER than being hooked to a wall in the hospital for at least a week (not to mention the packing and preparing to go to the hospital, it's worse than packing for a week to Disney!). We had been tracking Drake's passing-out episodes for months and seemed they were happening constantly during the week we choose to to try and capture one.



Day one... NONE! Day two... D's nurse P- came to work. He does tend to have them when she's around, and today was no different. I think he gets so excited she's here to play with him that he passes out from the excitement :) We even thought of pretending to get him ready for a bath (a usual onset) and go through the motions (since D- couldn't get wet due to the electrical cords). At first I thought, "Is that it? Is he going out?" If there was ever a time to have an "episode", now would be it! When he finally went out, me and P- were jumping up and down and saying yippee, yippee, punch the button, push the button. I was calling Shane and the doctor and everyone who would listen to the exciting news!!! Is that wrong or weird?





Who cares, we got one recorded and the next day, drove to Dr. Neuro to take that mean monster off Drake's head. The next week when the doc called to give me the results... no seizures! Not anything even close!!! STill no finding of what these strange little moments of going lifeless, laughing, twitching and repeating such with-out any pattern. What was the most interesting find of all was this, Dr. Neuro said that Drake's brain waves and patterns were that of a typically developing child!
What?!?!?! Even with the part of his brain missing and the lacking growth and development? One thing I have walked away today with (at least for today)is that Drake has and is making sure to do what no other thought he could do. He's growing and proving he is big and smart and strong and is going to be here for a long time to teach us all what we need to do better in ourselves and for our world.

Thanks, Baby Drake!

Fun Fall Day!!!

Just a FUN Fall Day!!!




It's not often Mommy gets to be in front of the camera... Thanks Pierina for the shots!!!