The 12 Month Studies, Day 3

I can't begin to express how much I love Duke. It's a major medical center but at this point it feels like a small close-knit community. Today Olivia and I had a busy day of appointments but everything flowed so smoothly and we rarely had to wait more than a few minutes between appointments.

We began our day at the ENT. He wanted to double check Olivia's ear and because of her history with sinus issues she sees an ENT every 6 months. He was able to see that her tube is still in place (they couldn't tell if it was still there on Monday because she had so much gunk in her ear then). So far the culture is positive for staph so the antibiotic that they started her on Monday should treat it nicely. It is good that Olivia ear already seems to be responding to the antibiotics.

We headed up to clinic for labs and they drew a massive amount of blood to run a long list of labs. It was really great to see so many of the nurses that we've gotten to know so well as they've cared for us over the last 9 months since we've been discharged.

We headed down to radiology for an echocardiogram. This was Olivia's 4th echocardiogram and she knows the drill by now. She was very happy to lay down on the bed and cuddle with me during the exam. The first echocardiogram that she had last July was a struggle, it took 3 times as long as today's exam did because she was not able to sit still. Today's exam seemed to fly by.

After the echocardiogram we headed back up to clinic to see Dr. Paul. Overall he is pleased with Olivia's progress but we have an appointment next week to go over all the results from everything next week.

We headed back down for some lung function tests and then a skeletal survey and chest x-ray. Olivia continued to cooperate like a champ. It was a long day and Olivia and I were both happy to head back to Mike and Peter. Mike and Peter were able to enjoy some time at the pool. I know I've said it before but it's so helpful to just have to manage one child during these appointments!

The 12 Month Studies, Day 2

Today we headed over to the Children's Hospital at the University of North Carolina so that Olivia could be evaluated by the Neurological Function in Rare Disorders folks. The day went smoothly but I'm too tired and drained tonight to share much about our day. I'll share some more about what we learned a little later on but for now I can say that I think Sanfilippo syndrome sucks. I think all lysosomal disorders suck. I think regression and degeneration in general suck.

But just to make sure we end on a positive note I will share that prior to our trip I researched restaurants in the Durham area that had kids nights or kids eat free specials. So far we've enjoyed free dinners at Red Robin, a local Mexican restaurant (where we also enjoyed $2 margaritas), and a local brewery. The kids are loving the free balloons that are accompanying the kids nights and the experience of eating out, a rare treat for us!

The 12 MONTH post-transplant studies, DAY 1

Today we began the 12 MONTH post transplant studies (those words just scream bold font to me:). We are in Durham for a week of fun filled testing and examinations. It will be a busy week but now that we've gone through all of this before it seems like a breeze. We're even looking at this like this week as an extension of our vacation. Mike is here all week to help and it is making this process so much easier. There's no way I'd be able to get through this week without help.

On tap for today was the EEG and Olivia was an absolute superstar! I kept her occupied with goldfish and Sesame Street while the technician hooked her up. After they got everything set up they dimmed the lights and started the EEG. Olivia cuddled up and ended up taking a short nap. I was even able to close my eyes for a bit and take a quick power nap.

After the EEG we made an unscheduled stop by the PBMT clinic because Olivia has some drainage from her ear. This isn't completely unusual but we wanted to have it checked out just in case. The did start her on an antibiotic and they are took a sample and will do some cultures but it looks like an ear infection. The good news that Olivia seems to be feeling good and it isn't bothering her.

Peter loves playing in the sink in the exam rooms in Clinic.


Olivia occupied herself by pigging out on chips

The Drugstore Game, Week 6

I did stop off at a CVS while we were in Charleston. I didn't need much but I was able to pick up a few things that we needed while we were on the road.



2 bottles Welch's Grape Juice $4.99, on sale for 2 for $6.00
Coupons $2.00
Extra Care Buck $1.00
Final Price $1.50 each!

Travel Size Contact Lens Solution $2.99
Coupon $2.00
Extra Care Bucks $2.99
Final Price -$2.00, I made $2.00 buying this

Toothbrushes $0.99 each

Triscuts $.50

Candy Bar $.23

I got $15.68 of stuff for only $3.94!

This is also the end of my 6 week drugstore game. Overall I got a total of $287.55 of merchandise, I've paid $189.04 total and I've earned $79.99 in Extra Care Bucks that I've used to pay for my purchases. So after 6 weeks I'm spent just $109.05 and gotten tons of stuff. I definitely think I'll continue to shop at CVS. Some weeks I did go over my $20 "limit" but when I average the total spent over 6 weeks it was under my $20 goal. Now that I understand the way I can combine manufacturer coupons, store coupons and store rewards it is pretty easy to get a great deal. Most of all it's fun though and I love the feeling that I'm getting such an awesome deal! I think I'll continue to play the drugstore game but I'll refrain from sharing all the details on the blog. If you decide you're interested in playing the drugstore game I've found that these websites have great resources. Also the drugstore game can be played at any drugstore...Walgreens, Rite-Aid, CVS....they all have similar programs and very competitive prices. I just chose CVS because it seemed to be the easiest to understand. Good Luck!

http://moneysavingmom.com/

http://www.chachingonashoestring.com/

http://www.southernsavers.com/