Transplant, One Year Later

This afternoon Mike and I drove into Durham to meet with Dr. Paul and Andre. I started a post earlier this evening, it had all the medical details but then I got tired and I decided to finish it later. I went to bed but I couldn't sleep so I finally decided that I should write. But I don't want to write about the medical details, or the test results, or the labs.

So much has happened this last year. Most of the time when I blog I share my thoughts and feelings but I try and be respectful of those people who I know will be reading. But tonight I just have this overwhelming urge to share, raw and uncensored sharing.

It's been such a year. I can't seem to find the right adjective to describe this year. Olivia's course of treatment over the last year has been unremarkable medically. She didn't get especially sick, her body reacted the way it should, she had a relatively short hospital stay and we were able to leave the Durham area relatively soon after transplant. Everything about her transplant seemed to go smoothly, it was unremarkable but....there are so many things about the last year that are remarkable to us, so many events over the last year are forever etched into my heart, and there is no way that I'll ever be able to consider any of it unremarkable.

First of all I've been completely overcome by people's generosity, towards us, towards our family. Sometimes it was people we knew, sometimes it was complete strangers, but in all cases it was always completely unexpected. And although I'll never have time to sit down and write the heartfelt thank you letters that I had wanted to the generosity is not unappreciated.

Secondly I wish there was some way to thank all the different people at Duke. I don't know if Andre will ever know that he's become a household name in our family. His name is mentioned often, here in our house and elsewhere. At the dinner table when Peter tries to share his strawberries with Olivia but I warn him that "Andre said Olivia cannot have strawberries yet" or when I'm on the phone with my mom explaining how clinic went and every other sentence starts with "Andre said ______, or "I asked Andre about _______". I will never forget the kindness and compassion of the nurses at Duke, both on 5200 and in the clinic. The nurses in clinic were fantastic with Peter and they were great at accommodating us. I love that they remember which cartoon characters Olivia likes and which nursery rhymes make her smile. I'll never forget that Laura Y was our nurse the first night we were on 5200, that she gave us the grand tour or that Stephanie D administered Olivia's first dose of chemotherapy.

Then there are our friends, I use that special word for the other parents and kids who share this experience with us. Until you've watched the chemotherapy poison drip into your child's vein you cannot possibly understand what the experience is like. We have been lucky, there's just no other way to describe it. We didn't have any more or less faith, just luck. It's frustrating because this is the one piece of this year that haunts me the most. I see the faces of our friends from 5200 and I'm haunted by those who are no longer with us. It makes me feel so incredibly guilty to see Olivia sleeping away peacefully downstairs while some of our friends haven't been so lucky. I try not to let the guilt overwhelm me, I know those parents would give anything to spend one more night with their children so it would be a waste for me to spend time feeling guilty instead of enjoying and appreciating that Olivia is here.

This experience has changed me so completely. Mike's old unit from Ft. Lewis is just returning home from Afghanistan. Sometimes I wish I could take every single second of this last year and trade it for a deployment, I think that would have been easier.

I'm glad it's over but I'm apprehensive about the unknown. I miss the little girl that Olivia used to be, I miss hearing her sing, and hearing the sound of her voice. I know I'm lucky though because she's here, she can still cuddle up and she gives great hugs.

What a year!

The 12 Month Studies--the medical stuff

On Monday Mike and I drove to Durham for our big meeting with Dr. Paul and Andre. We left both Olivia and Peter at home with a babysitter so that we would be able to really listen and understand the conversation. It was such a luxury to be able to participate in the meeting together and actually hear what they were saying!

So here's the breakdown of where things stand.....

• Labs--Olivia's blood work looks good. Her white and red blood cells are doing just what they should. Her labs indicate that her kidneys and liver are functioning well. Her thyroid is also working well. There is always concern that these organs will be damaged during chemotherapy and not recover. We are still waiting on the final result of her immune function tests but preliminary results look good. We are also still waiting on the urinalysis results, we are hoping that it will show that Olivia's body is producing the missing enzyme on her own. Olivia continues to remain 100% donor cells!
• EEG--Normal, Normal brain activity while Olivia is awake, normal activity when falling asleep and when asleep.
• Pulmonary Function Tests--Olivia did great, her lungs are functioning at 101% so she's doing better than she was prior to transplant.
• Vision--Mike and I have not been consistent about making Olivia wear her glasses. Her prescription hasn't changed. We've had a lot of other stuff to worry about over the last year so we're not going to beat ourselves up over not enforcing the glasses but we're really going to work on having Olivia consistently wear her glasses.
• Audiology--Olivia wasn't able to participate consistently enough to get an accurate score. She responded consistently to speech sounds but not other sounds. They recommended that she undergo a sedated hearing test so we're working to schedule that in conjunction with another procedure.
• Echocardiogram--Olivia's heart is functioning well. The latest echocardiogram (she's had 5 in the last year) showed that one of the valves in her heart isn't closing completely (tricuspid valve insufficiency). Right now it's isn't something to necessarily be concerned about but it's good to be aware of and we will continue to monitor it.
• MRI--Compared with the MRI Olivia had done in June of 2009 Olivia has significantly worsened brain atrophy. This was absolutely the hardest news for Mike and I to hear but at the same time Mike pointed out that it was comforting to him that we now have scientific proof of why Olivia has changed so much over the last several months. This is do to the combination of the chemotherapy drugs and the progression of Sanfilippo syndrome. It is not likely that it will improve with time and it would be ideal if the atrophy did not continue.
• Developmental Evaluation--The staff was very impressed with Olivia's compliance and cooperation during the medical part of the exam. Olivia almost seems to enjoy having her blood pressure taken and she doesn't mind any part of the medical exam. Practice makes perfect and she's had tons of practice! Overall they determined that cognitively Olivia has regressed, test results show she's now around the 12 month mark. The doctor followed that remark with the cheerful news that 12 month old kids tend to be very happy. It stings but she was correct, it could be worse, she could be an angry teenager who screamed at us day and night, or she could be a 6 week old baby with colic who screamed constantly.

Now to end with some positive news. Olivia is doing very well medically so we are scheduling the surgery to remove her port for the end of August. Once her port is removed we'll be able to stop the last antibiotic medication and then Olivia will be free of all of her transplant medications. Olivia will be able to go to school in the fall, she's officially no longer immune suppressed! Olivia will receive the first of her vaccinations in August (kids that have bone marrow or stem cell transplants have to be re-immunized). Technically you are at risk for the dreaded Graft vs. Host for 3 years but the fact that we were able to wean Olivia from the anti-rejection medications bodes well for us. If we make it to November without any further complications then we can relax a bit more about worrying about GVH.

Overall Mike and I are happy with our decision to have gone through transplant. We hope that the transplant will keep Olivia healthy enough to be able to benefit from future treatment options. Of course right now there is not a cure but we're hopeful. We hope we've bought Olivia some time.

The 12 Month Studies, Days 4-5

I didn't get a chance to post yesterday, I was just so exhausted. It has been hot around here lately (3 days in a row of 100*+ temps) and after schlepping all over the hospital we're all exhausted.

We thought that Thursday would be a light day. We headed to clinic for some quick labs then we had an appointment with the folks in the allergy clinic for some allergy testing. Olivia has eczema and asthma and those are often accompanied by allergies. She's never been tested and we were having some issues so we wanted to get a test done. Lately it seems like Olivia has been having a difficult time with Milk. They did a skin test to test for several common allergies--pollen, cats, dogs, milk, dust, etc. It turns out that Olivia has very sensitive skin. Her skin reacted strongly to everything including saline but it also reacted to milk. They did a blood test to determine how severe it was and it turns out that Olivia isn't specifically allergic to milk but she does have a lactose intolerance problem. Her skin is sensitive so we'll have to continue to be careful about which detergent we use, which products we put on her skin, etc.


After the allergy clinic we headed over to the eye center for an appointment with her eye doctor. To be honest we have been very bad about making Olivia wear her glasses. Olivia does a pretty good job of keeping her glasses on but Peter finds them very tempting. For the most part Duke does a great job of getting you in and out at appointments but the eye doctor took forever! It took over 3 hours.

After the eye doctor we headed back to the hospital for Olivia's audiology appointment. With her ear infection I wasn't expecting great results. Olivia responds well to speech but her response to the higher pitch sounds is very inconsistent. They don't know if her inconsistency is the result of hearing loss or her behavioral inability to participate in the testing process. They recommend that she have a sedated hearing test.

Peter and Olivia were exhausted after walking all over the medical center. Our stroller had 2 flat tires but fortunately there were plenty of wheelchairs around so Mike and I got a break from lugging them around.


Thursday evening we headed to another Durham Bulls game. It was pretty hot but the kids took great advantage of the $1 specials on popcorn, french fries, and hot dogs. Mike and I enjoyed the Blue Moon on tap.


On Friday we headed up to clinic for one last lab draw and then we went down for Olivia's MRI. Olivia hasn't had an MRI since May of 2009 before her transplant. We've been lucky that she's been able to get through CT scans without any sedation but I knew that there was no way we'd be able to do an MRI without sedation. The sedation team at Duke knows Olivia and her medical history and that makes things so much easier. They gave Olivia some medicine through her port and she fell asleep in my arms. I was able to sit in the room with her throughout the MRI. Olivia woke up quickly and she was pretty grumpy but was very excited to finally be able to have something to eat and drink (she couldn't have anything after midnight on Thursday evening). Mike and Peter picked us up and then we headed home.

The highlight of our day Friday was meeting another family of a child with Sanfilippo syndrome who was back at Duke for their post transplant studies, their FOUR year transplant studies. It was such a pleasure to meet their family. Meeting them provided a very surreal glimpse of what our lives might be like in 4 years.

It is really nice to be home again! The kids were very excited to see their rooms and their beds and we're all looking forward to sleeping well tonight! Mike and I are meeting with Dr. Paul and Andre on Monday to go over all the results from this week. I'll post more on that meeting later on.

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/

Vacation

We have been looking forward to a family vacation for quite some time. We went back and forth about what to do and where to go. We strongly considered the Outer Banks but were hesitant about being stuck in one place for an entire week. We decided to try and stick close to home and save the Outer Banks for another trip. I am a planner and a list maker so I love the planning part of the trip and I think that this time I did a pretty good job. Mike made fun of my binder full of typed itineraries and directions but I think he secretly loves my organizational skills. I was determined that we would spend no longer than 4 hours in the car at any one point. We learned on our cross country drive from Louisiana to Washington State in 2007 that Olivia occasionally gets car sick so we wanted to be careful about that on this trip.

Day 1--Savanna, GA
It took us just about 4 hours to get to Savannah from our house. We left early in the morning so that we would have the entire afternoon to spend in Savannah. In Savannah we had fun checking out every single one of the 22 city squares. Mike had been to Savannah once before but I had not and I LOVED it. Savannah is a beautiful city. I loved that it didn't feel crowded. I love the history. I loved that we were just able to wander around. When we walked by Telfair Square we saw the Telfair Museum and I remembered that it was one of the museums participating in the Blue Star Museum Program so we were all able to visit the museum for free. There was a really interesting exhibit of current solider portraits printed using the 150-year-old collodion wet plate photographic process. The particular technique requires the subject to remain posed for up to 60 minutes in order for the image to be captured so the photographs were so fascinating. We headed over to the River Walk for dinner and some souvenir shopping before heading back to our hotel. Our sleeping arrangements throughout the trip were interesting. In Savannah Peter slept most of the night in his pack and play and Olivia had a bed to herself but somehow the kids and I woke up in one bed with Mike in a bed by himself.

We picked up breakfast at a cafe and then headed out to continue exploring the squares. Peter loved chasing the birds around. It was so neat to see how the different squares reflected the different neighborhoods. Walking around in Savannah reminded me of walking around Rome, there's so much history. People are living modern lives surrounded by hundreds of years of history (of course in Rome it's thousands of years). We headed over to Forsyth Park so that the kids could enjoy the huge playground and splash fountain before loading into the car and heading to the beach. Forsyth Park was enormous and beautiful and had the cleanest public bathrooms I've ever seen! I wish I would have had the camera with me in the bathroom, they were beautiful, so bright and clean. The kids loved the park, it was such a peaceful spot.

Day 2--Tybee Island, GA
We took a short 30 minute drive over to Tybee Beach (formerly known as Savannah Beach). On our way we stopped off at Uncle Bubba's Oyster House, the restaurant owned by Paula Deen's brother. A friend of mine had told me that the Lady and Son's (Paula Deen's restaurant in Savannah wasn't really worth the hype and suggested this place), she was absolutely right! We went for lunch and it wasn't crowded at all. The food was fantastic, I had the shrimp and grits and then Mike and I shared key lime pie. They also have a community special on Monday's and entrees are buy one get one free so our meal was very inexpensive. I also got a cook book while I was there (signed by Paula Deen of course) and her brother, Uncle Michael was also there signing books. Uncle Michael was very nice, he's there in his restaurant almost every day, he really is an owner/operator, we saw him greet customers, refill drinks, buss tables, it all seemed so laid back!

Tybee Island reminds me a lot of Key West. It's a quirky spot, it's not overdeveloped, in fact there are only a couple of small local hotels. The island is full of local shops and pastel beach cottages. We loved it. There was not much traffic, most people seemed to be on bikes. The beach was peaceful, the surf was calm. Peter loved the ocean, he ran straight into the waves and loved to sit on the beach as the waves washed over his toes. Peter loved playing in the sand. Olivia is the ultimate beach bum. The sand and waves were very soothing to her. She'd play in the water for a bit to cool off but was completely content to cuddle in a beach chair. Mike and I took turns switching off between the kids so we each got the best of both worlds.

The kids slept great at Tybee Island. Our room had a king bed and they gave us 2 pack and plays and Olivia and Peter each slept in one. We actually ended up putting Peter in the pack and play in the shower and Olivia behind the door to our room. It was unique but it worked well. We went on a dolphin tour and Peter loved seeing the dolphins. Olivia was very unsure about the dock but seemed to enjoy the boat ride. I know that she saw the dolphins but she didn't seem impressed by them at all. We stoped off at the Tybee Island Light House and then headed the the beach for a few more hours before setting off for our next destination.

Day 3-4--Moncks Corner, SC and Charleston, SC
We had a short 2 and a half hour drive from Tybee Island to Monck's Corner, SC. I love Charleston but Mike and I just went to Charleston for a long weekend in April so I wanted to try and find something different for us to do. I was looking at military hotels in and around Charleston and I found Short Stay, the US Naval Recreation Facility in Moncks Corner, SC. This place was fantastic. It's a short 45 minute drive from Charleston and we were planning on staying at Short Stay at night and then heading into Charleston for the day but once we checked in at Short Stay we didn't want to leave. We had a 2 bedroom "roundette" cabin with a full kitchen and we spent much less per night than we would have if we'd stayed in Charleston. Short Stay is on Lake Moultrie and there's a swimming beach (with lifeguards), playgrounds, picnic areas. I was hesitant about the lake swimming thing but Peter loved that it was just like the beach without the waves. He saw the water and headed straight in. The water was clearer than the ocean and there was a shallow swimming area for kids that was only about 2 feet deep. They had boats for rent and Mike took the South Carolina Water Safety test so that he could get a boating license and rent a boat. We rented a little Johnny Boat and had a blast exploring the lake. Olivia enjoyed herself but was content to sit and hold my hand while Peter insisted on helping Mike drive the boat. By the end of our excursion Peter passed out and fell asleep on Mike's lap.
Since we had 2 bedrooms in our cabin we were really able to spread out. It was nice to be able to cook our own food and not be concerned about how much noise the kids were making. We tried having the kids sleep in one bedroom together but that didn't work very well so Mike and I were in separate bedrooms with different kids but we all slept well. We headed into Charleston to check out the Battery and visit Rainbow row but my favorite part of Charleston was our visit to the Angel Oak. I had never heard of Angel Oak before but it was awe inspiring. Angel Oak is a 1500 year old oak tree on Johns Island outside of Charleston. There are no words to describe this tree, it was amazing. Peter just kept pointing up and saying "ohhh".

Day 5--Myrtle Beach, SC
We left Charleston/Moncks Corner and headed to Myrtle Beach for one last beach day before heading home. We arrived in Myrtle Beach in time for a summer downpour so headed to the outlet mall during the storm. I cannot believe that I'm already buying 24 month clothing for Peter. And now that Olivia is finally gaining some weight it's nice to be able to buy some new summer clothes for her. We headed to the beach bright and early and Olivia again settled into beach bum mode. Peter was a little disappointed that the surf was a little more rough than he had been used to. Mike and I decided that Myrtle Beach was not one of our favorite parts of the trip, it's overdeveloped and so crowded. The beach is a stretch of one high-rise hotel after another, the surf is rough, and there are just too many amusement parks and entertainment complexes. We think we'll stick a little closer to home and head to Wilmington the next time we have to have a beach day. We were in a very nice hotel in Myrtle beach but the kids didn't sleep well at all. I think everyone was starting to get a little tired of the unique sleeping arrangements by this point.

All in all we had a fantastic time. It was really great to have some time to relax and spend time with each other. Mike has taken off of work for next week as well but we'll all be in Durham for Olivia's 12 month post-transplant studies. It will be a very busy week of doctors appointments and I'm glad we had the chance to relax before heading into that week of stress.

I put together a slide show of our vacation photos. Enjoy!

And We're Off....

We're heading out of town on vacation and I'm so excited about our trip. I won't be blogging for a few days but I'm sure I'll have plenty to share when we get back. We're not going far but we're looking forward to spending time together as a family. This will also be our first real vacation with Peter. The dreaded Christmas/Snowpaloza stay in the Seattle Airport in December 2008 does not count as spending 24+ hours snowed in to an airport with a toddler and an infant does not a happy vacation make. Check back for the recap next week:)

The Drugstore Game, Week 5--It's a Two Part Trip

There were just so many good deals at CVS this week that I had to make 2 trips.....

Trip One



Pampers Diapers, Jumbo Box $23.99
On Sale for $19.99
Coupon for $3.00 off
Extra Care Bucks $3.00 Coupon
Final Price = $13.99

Cover Girl Make-up
Mascara $9.99, on sale for $8.00
Coupon For $2.00 off
Final Price = $6.00

Lipstick $8.99, on sale for $7.00
Coupon for $1.00 off
Final Price =$6.00

Eyeshadow $3.49
Coupon for free eyeshadow when you buy mascara
Final Price =FREE

And since I technically purchased more than $15 of Cover Girl cosmetics (even though I only spent $12) I got $5.00 in Extra Care bucks. Ultimately I spent $7 and got $20.47 worth of make up.

SoBe Beverages (I've never tried these, I hope Mike likes them)
$1.59 each, on sale for buy one get one
Coupon for 1 free SoBe Beverage so I got 2 for Free.

BioTrue Contact Solution
$2.99
Coupon for $2.00 off
$2.99 Extra Care Bucks
Final Price = I made $2.00 buying this item!

Secret Clinical Deoderant
$9.99, on sale for $7.99
Coupon for $1.00 off
$1.00 Extra Care Buck
Final Price = $5.99

I got $62.62 of stuff for only $29.98!


I made a second trip to CVS (kids in tow) to pick up these bargains.....



Pampers Diapers (this time for Peter)
$23.99, on sale for $19.99
$4.50 CVS Coupon printed in store
$2.00 Coupon
Final Price = $13.49

Olay Cleanser $7.99 on sale for $6.99
$5.00 Coupon
Final Price = $1.99

Olay Body Wash $7.49
$4.00 Coupon = $3.49

Ivory soap 4 pack $2.99
Coupon for free with puchase of Olay Body Wash
Final Price = FREE

2 Dove Chocolate Bars .19
Coupon for buy one get one
Final Price = 2 for .19

I got $42.84 of stuff for only $18.97!

Happy Birthday Olivia

We celebrated Olivia's 4th birthday together on Tuesday evening. We had a great time. It was a very laid back celebration and I think the kids preferred that. Olivia enjoyed the entire experience so much that we are thinking of making it a quarterly thing. And why not? At the very least we're going to continue celebrating her 4th birthday for at least a couple more weeks.


I learned that despite how much time I spend watching "Cake Boss" and "Ace of Cakes" and numerous other Cake decorating shows on TV, cake decorating is not one of my special talents. I am sure that it was a great idea and I'm going to try again someday soon, practice makes perfect. Olivia didn't care though and when she saw the cake her eyes lit up! I am very proud of the Happy Birthday banner I made, it came out beautifully and I think we'll use it year after year.

I love all of these pictures, they're so reflective of our celebration, it was very low key, I love the emotions that we were able to capture on all of our faces. I love that we have these memories!

Lunch Date

To say that I am enjoying our respite care is an enormous understatement. We are so blessed to have found such a wonderful respite care provider. I am loving the extra time that I get to spend with Peter. I am able to relax and enjoy a few hours away knowing that Olivia is in good hands. She is happy, and entertained, and well cared for. As a result I am more patient, more laid back, I'm a better mom because I'm able to get a bit of a break. Peter and I run errands together, he gets to drive the fancy car grocery cart at the supermarket. We get to ride in the car with the windows down. We go to the library together.

Last week we met Mike for a special lunch date as he was getting out of the field. It was such a treat to have lunch with my two special guys! We went to a Wing place near our house. It's an absolute dive but they do have great wings. Peter even enjoyed his first chicken wing.

4 years ago today.....

I started this blog after Olivia was born so I never got a chance to tell her birth story.

Mike deployed shortly after we learned that we were expecting. I was alone for almost the entire pregnancy but I don't remember it as a sad time at all. It was comforting to know that I was never really alone because our baby was with me. I had some great girlfriends to keep me company. It was a luxury to only have to take care of myself and the baby. I was still working so I had work to keep me busy, I took a lot of naps, and I had fun decorating the nursery.

My due date was July 11th and Mike had scheduled his mid-tour leave around that time to be home for Olivia's arrival. I went to my regular weekly ob appointment on June 30th and by obgyn was very concerned. He said my fluid levels were low, he told me that if my husband were home that they would have delivered the baby immediately. He said that he would send the necessary Red Cross message to Mike in Iraq to get him home as soon as possible. They did an ultrasound and could see that Olivia was still doing well but that I needed to rest. I was put on strict bedrest for the weekend and told to come back first thing Monday morning. Of course I freaked out, I called a friend who's husband was with Mike in Iraq and she got in touch with her husband and they took care of the Red Cross Message part. Things started happening very quickly, my mom bought a plane ticket immediately and flew from Houston to Colorado that evening. I went straight to bed, Mike called at some point during the weekend, he was already in Germany, he left Iraq within a couple of hours of receiving the red cross message (stars and flights had aligned) and he arrived in Colorado on Sunday evening on July 2nd.

We all went to the obgyn together on Monday, July 3. They did another ultrasound (this was the first ultrasound that Mike was able to attend) and declared that everything was perfectly normal. I had just been working a little too hard the week before and needed to take things a little slower. Mike was already home though and if at all possible we wanted him to be there for Olivia's birth. The doctor suggested that we induce labor that week and we chose Thursday, giving us 3 days to spend together before Olivia was born.

On Thursday, July 6th we headed to the hospital bright and early. I was started on medications to induce labor and we waited. Initially things seemed to be happening quickly. Prior to being admitted to the hospital I was already 90% effaced and dilated 1 so I was hoping things would move right along.. We relaxed and watched TV and waited. I was disappointed that I couldn't walk around much because of the medications so we just waited. Some time in the afternoon my obgyn came over and broke my water, again hoping that would continue to move things along. A little while later I remember finally caving in and asking for the epidural. I have no idea what I'd been waiting for. I think I was about 6mm dilated by the time I got the epidural. Unfortunately as soon as I got the epidural things seemed to slow down. I stopped dilating and my contractions were not as strong. Around 9pm the doctor came in to discuss delivery by Cesarean section. I'd been in labor since 5am, 16 hours, but my body had stopped laboring. The doctor recommended a Cesarean, I cried, I was terrified. Mike and I prayed, we discussed it and we decided that we preferred a "planned" Cesarean rather than and emergency one several hours later. It only took a few minutes for them to prep me and off we headed to the surgery.

While Mike was getting changed the anesthesiologist asked me what type of music I preferred. I turned down all classical music, I was worried that it with the combination of medication would put me to sleep and I didn't want to miss anything. I chose the "Rolling Stones" and the nurses and doctors in the room all complimented my choice. Mike walked into the room and commented on the music, I remember being so excited to tell him that I chose it. Olivia was born at 9:32 pm on Thursday, July 6, 2006 weighing in at 7 lbs, 11 ounces.

Happy Birthday Olivia! I can't believe that you're 4 years old!

Happy Birthday America!

We started with a cake (and even sang "Happy Birthday"). Olivia loved the singing and it was good practice for her birthday coming up this week. She's feeling much better!



Daddy staged this photo of Olivia and Peter picking their noses at the same time. Of course my kids would NEVER pick their noses! How do you get toddlers to stop doing this!?!



We headed to Ft. Bragg to watch the fireworks. There were supposed to be over 45,000 people at Ft. Bragg watching the fireworks but Mike found a great spot for us to watch them. We were well away from the crowds! We set up shop in an old fenced in baseball field just steps from where we'd parked the car.


The kids LOVED running in the big open field and I loved that it was totally fenced in!


Waiting for the fireworks.



Thanks to our weird schedule the last couple of days we were all wide awake even though the fireworks didn't start until 10pm! Olivia was memorized by the fireworks and Peter loved them. I was worried he would be a little scared with all the noise but pointed and "ohhed" and "ahhed". The blue fireworks were his favorites, he clapped for those.









Happy Birthday America!

Change of Plans

Our 4th of July weekend plans came to a screaching halt on Friday evening. I went to check on the kids around 11 pm when I was heading to bed. I touched Olivia's forhead and it was burning up, her temp was 103.6. I started to panic. I gave her an immediate dose of hydrocortisone and a tsp of tylenol. As Mike threw some stuff into the diaper bag I paged the PBMT fellow on call at Duke. They told us to head straight to the ER and promised to call ahead and let them know we were on our way. As I drove to the hospital I was really worried about Olivia, this was the last thing that we expected. Olivia has been doing so well, I was really worried about her, I don't think that I'd been this worried in several months. All the anxiety and uncertainty from our stay in the hospital came rushing back. I can't believe that we lived with that amount of stress and pressure for so long.

We got to the hospital (anyone who has ever waited at an army hospital will appreciate this) and we were rushed right into a private room. The PBMT doc at Duke had certainly called ahead and who knows what he told them but we got great treatment. By the time we checked in at the ER Olivia's temp was down to 99. I brought Olivia's port access supplies with us (they don't stock the right size needle for Olivia at the hospital here) and the nurse we got had pediatric hematology experience. He easily accessed Olivia's port. They had already received all their instructions about which labs and cultures to do from the doctor at Duke and they got started right away. They got Olivia started on a dose of antibiotics and Olivia started to feel better. I started to relax a bit.



We had arrived at the ER around midnight and they got Olivia's IV antibiotics going around 12:30. I knew it was going to be a long night. Around 3:30 am we were finally discharged and the nurse rewarded Olivia with a popsicle. We finally got home a little after 4 am.



On Saturday we hung around the house. Olivia did sleep late and she woke up with a low fever. Olivia was feeling better but she was content to just snuggle and watch cartoons. Mike and I both completely forgot about the neighboorhood 4th of July celebration that we had been looking forward to (parade, outdoor concert, dog show, fishing tournament, picnic---there's always next year). Olivia's primary doctor at Duke was actually inpatient this weekend and one of the nurse practicioners called to check on Olivia.



Since her fever had been so high the night before they wanted her to get another dose of antibiotics. So we prepared to head back to the ER so that she could get her second dose of antibiotics close to 24 hours after her 1st dose. We arrived at the ER around 10:30 pm, we were lucky to get the same nurse and doctor that we'd had the night before. They quickly got the port accessed and another dose of IV antibiotic started. Olivia finished out the evening with another popscile and then we arrived home a little after 1am.



Olivia seems to be feeling much better. Her cultures are all still negative so we're not sure what had happened. We're just glad that she seems to be feeling better!