Beach Boy

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Retreat Recap

This past weekend our family attended the Strong Bonds Marriage retreat sponsored by Mike's unit. We've heard about these retreats before but this was the first time that we were able to attend. The retreat was at Myrtle Beach (about 2 and a half hours from our house) and almost all of our expenses were paid. They had childcare at the retreat but since Olivia cannot be with other children that wasn't an option for us. Mike spoke with the Chaplain to see if we could work something out and we were able to make arrangements that worked for our family. The cost of our room was covered (as it was for the other retreat participants) but they were able to put us in a large 3 bedroom, 3 bathroom suite with a kitchen. We brought our regular babysitter (the one we found on care.com), the babysitter brought her husband so she had help with the kids. We all stayed together in our spacious suite. We were responsible for paying the sitter but that was our only expense for the weekend. The sessions were good, we had some great conversations. The kids had fun and we got to spend some nice quality time together. The resort had a beautiful pool and Olivia enjoyed floating around the lazy river with me while Peter loved the water slides. It was a great experience and I would absolutely recommend it! Peter loved the beach and I'll try and post some pictures from his first beach experience soon.

After the rain

It's rained here for the last 3 days. This evening the rain stopped and the sun peeked out for a bit. The kids went to bed a little early tonight, 7 for Peter and 7:30 for Olivia. Mike got home and I decided to go for a walk. It's been a really long time since I've gone for a walk without pushing a stroller. I was able to follow my walking program and alternate between a moderate and a brisk pace. When you're pushing a 30 lb stroller with 60 adorable pounds of passangers it's difficult to enjoy the simple act of alternating your pace. I was able to complete my walk in record time too! It was beautiful outside, everything was fresh and new after the rain. I realized that the entire time we lived in Washington I missed that fresh, after the rain feeling. It rained in Washington all the time but it was a constant mist, there was a constant dampness in the air. We never got to experience that freshness that comes after the rain. It's nice to be back in the South!

Hunker Down

On the news this morning they announced that today marks the beginning of Hurricane Preparedness Week in preparation for the official start of Hurricane season on June 1st. Both Mike and I grew up along the Gulf Coast but it's been 6 years since we've lived anywhere where we've had to worry about Hurricane season. There were a couple of typhoon warnings for the Puget Sound when we were living in Washington state but that wasn't really a big cause for concern. I'm not saying typhoons are not cause for concern just the possibility that it would have actually reached the Puget Sound. I'm trying to resist the urge to go stock up on bottled water and canned goods.

In other news we are all doing well. Peter is saying new words everyday, it's amazing to see how quickly he picks up on new things. He knows exactly which plants to water in the garden all by himself. I need to schedule his 18 month well baby visit, he was 18 months old earlier this month, I'm a little behind. Olivia is doing really well. She has been quite the giggly girl lately and it's nice to see her so happy. She's starting to use a few more words again, "goat" was a favorite this weekend, but she's not really communicating verbally. She does ask for pepperoni, she calls it "roni" and she never touched the stuff before her transplant. She loved pizza but would always pick off the pepperoni. Now she can't get enough of the stuff and pepperoni has become a weekly staple on our grocery list.

On tap for this week are the usual therapy sessions, an IEP meeting, and the All American Games. The All American Games are the 82nd Airborne Division's annual field day competition. Each brigade forms their own team and they compete against each other in baseball, football, tug-of-war, etc. The FRG is selling hot dogs as a fundraiser at the games so we'll be busy with that. This weekend Mike and I are going on a marriage retreat sponsored by the army. We've heard great things about these retreats and are looking forward to going but I'm nervous about the kids. They have childcare provided at the retreat location but since Olivia (because of her immune system) and Peter (because he hasn't had any of his shots because of Olivia's immune system) cannot be with other kids we are bringing our babysitter with us. I'm nervous but I know that Mike and I are both looking forward to spending some time together. Did I mention that the retreat is in Myrtle Beach? That's some serious motivation to get through this week!

Friday Afternoon Fun

Barefoot.....

Backyard....

Bliss......

Tick Tock

• 6:00 am--Wake up and get going on the elliptical
• 8:00 am--Olivia wakes up, get her breakfast, get dressed and ready for the day
• 9:00 am--Speech Therapy, Peter wakes up but seems content in his crib so I let him play
• 10:00 am--Speech Therapy over, I get Peter up and feed him breakfast while I give Olivia meds and administer nebulizer treatment
• 11:00 am--Let kids play while I frantically try to organize FRG bank account info while faxing paperwork for respite care and cleaning up from breakfast
• 12:00 pm--Fix lunch and feed the kids
• 12:30 pm--Put Peter down for a nap, clean up lunch
• 1:00 pm--Physical Therapy with Olivia while Peter is napping
• 2:00 pm--Playdate/FRG Treasurer training
• 4:15 pm--Playdate over they leave
• 4:30 pm--Supposed to leave the house but get stuck on the phone, load the kids into the car while finishing phone call, leave in such a rush that I forget military id and bring house phone instead of cell phone
• 4:45 pm--Leave house for the 2nd time, this time with correct phone and identification
• 5:05 pm--Arrive late to pick up friend for meeting
• 5:20 pm--Don't know where meeting is at Ft. Bragg and get lost trying to follow directions that friend's husband gives her
• 5:30 pm--Officially late for meeting, still driving around Fr. Bragg lost, kids are both whining in the car, friend is *understandably* very upset to be late to meeting and begins crying, cannot get in touch with her husband, no cell service
• 5:50 pm--Arrive at meeting, get everyone unloaded and into the correct conference room (Peter is barefoot because he took off his shoes and socks in the car and I didn't have time to put them back on him because we're already late, I'm that mom with the barefoot kids)
• 5:55 pm--Meeting ends, last hour and a half has been a complete waste of time, Friend seems very upset
• 5:57 pm--Try to make friend feel better by introducing her to other people but by this point I introduce her using the WRONG name
• 6:05 pm--Terribly embarrassed, call Mike to inform him that he's leaving work now, regardless of how much else he has to finish, Mike has no sympathy for me as he told me I shouldn't have gone to said meeting in the first place
• 6:10 pm--Meet up with Mike and we go to dinner together, Peter and Olivia both LOVE Kentucky Grilled Chicken
• 7:00 pm--Bath time, meds, and bedtime for the kids
• 8:30 pm--Mike goes to bed and I fall asleep watching Iorn Chef America re-runs

Sense of Accomplishment

I started off today with a to do list and a plan. I got the kids up, dressed, fed, dressed again (now I remember why they eat breakfast everyday in their pj's), and loaded into the car. First stop....Post Office to mail some long overdue packages. That plan was scrapped when I realized I didn't have a debit card, a credit card, or a check and I didn't have enough cash to mail the packages. I really wish that I could be more organized about getting things into the mail.

Next stop was the hospital at Ft. Bragg for some medical paperwork for Olivia. I finally find parking and then realized that the stroller wasn't in the car. I seriously thought about just turning around and scrapping the entire thing but I didn't. I had a mini-pep talk with the kids in the car about how important it was to hold mommy's hand. Peter's response was "esss mama" with a beautiful dimply grin. Olivia's response was to look at me with her big brown twinkling eyes and giggle like a maniac. Just thinking about that moment again makes me laugh. We got into the building and up to the 5th floor to turn in the paperwork. In the waiting room Peter played happily with the toys and was so proud of himself for rocking by himself in the rocking chair. Olivia threw magazines all over the place, ran down the hallway 2 or 3 times and set of an emergency exit door alarm, giggling like a little maniac the entire time. We finally got the paperwork we needed signed and stamped and were on our way. Back in the car we headed to our next stop, turning in the precious paperwork we'd just finished filling out. As I made my second trip around the parking lot I thought "this just isn't meant to be, we'll just head home" but then a parking spot appeared. Another little mini-pep talk, this time with the promise of chicken nuggets if everyone behaved and we headed out. We made it to the right place and turned in the paperwork and headed out. Peter pushed the emergency alarm in the elevator (I guess he was jealous of Olivia's emergency exit alarm at the hospital). As the elevator doors opened on the 1st floor we were greeted by 3 MP's (military police) ready to assist us, or arrest us, I'm still not quite sure. Olivia chose this moment to begin singing the "ABC song". Seriously by this time I really can't do anything other than laugh and I do try to laugh it off but I get the feeling that the MP's don't think I'm taking this issue clearly enough. I announced that we had to get home for nap time (I'm sure they think I'm completely bonkers by this point) and we just head out to the parking lot. After I got everyone loaded up into the car I let out a big sigh and felt the most enormous sense of accomplishment. I didn't get everything done that I needed to get done, we had to deal with several minor emergencies, but I did it!

Musical Mommy Moment

I found an old itunes gift card when I was cleaning and I went on a musical shopping spree. How is it that I didn't who Ingrid Michaelson was? If you aren't familiar you have to check it out!

While Peter was napping Olivia and I had an impromptu dance party in the kitchen. I loved every minute of it!



Along those lines I'm looking for some new songs to add to my workout mix, please share any songs that seem to pump you up!

Weekend Review

Another Monday, the weekend seemed to fly by. On Friday Mike had some friends over to play poker. One of them brought their wives and she and I had fun over mojitos and The Real Housewives of New York. On Saturday morning we got up and out of the house bright and early to head to the neighborhood yard sale. Our neighborhood in Washington had the absolute BEST yard sale ever, unfortunately this one did not compare and it was a complete waste of time. I did splurge on this little gem for $3. Peter loves it so it was $3 well spent. He makes vroom, vroom motorcycle noises the entire time he's on it so it was impossible to get a picture of him smiling.

On Sunday we made a big purchase that has been several weeks in the making. We sold our patio furniture before we left Washington state. After moving from Colorado, to Oklahoma, to Washington we didn't think that it could stand another move. We've been looking at patio furniture for weeks now. It's a big purchase for us and we were being very picky...it had to be the right size, the right construction (no glass top), the right price, etc. We thought we'd found the perfect patio furniture a few weeks ago but we misread the price and discovered at the register that it was more than we wanted to spend. The same set went on sale this week and Mike got the last set in the store.

I can't believe it's Monday again. On tap for this week are Olivia's therapy sessions and Mike's Jumpmaster test. Mike has been taking a Jumpmaster class for the last couple of weeks. He has his final test this week and he's a little nervous about it so keep him in your prayers.

MPS Awareness Day

May 15 was MPS Awareness Day. We didn't do a thing to raise awareness, we didn't recognize or celebrate the day around here. I didn't tell anyone. We didn't even wear purple. I just didn't have the energy to do it this year. It's not just the energy and motivation to get some purple ribbons together, I didn't want to deal with all the emotional stuff. This last year has been such a fight, such a struggle.

The mother of a friend of mine had breast cancer, I remember my friend talking about how much she hated breast cancer awareness month after her mother passed away. She talked about how she was still angry at breast cancer, angry at the loss of her mother and that prevented her from raising awareness. I feel the same way, I'm all too aware of the effects of MPS and this year I just couldn't do it. I have big plans for next year but for now I'm happy to hear how our MPS friends raised awareness. I hope people understand why I just couldn't bring my self to raise the purple flag this year, but then again I don't really care if people disagree with how I'm feeling. I'm being honest and truthful. I'm glad that we didn't recognize MPS awareness day this year we did what was right for our family. I am looking forward to next year and hoping that we're in a better place to raise awarness and participate 12 months from now.

The 1.7 pound difference

A week ago the occupational therapist suggested that we try using a weighted vest to increase Olivia's attention span. I didn't know anything about weighted vests but we're willing to try anything that might help. Olivia's first experience with the weighted vest was Monday during Occupational Therapy. The vest itself is pretty simple, it's a cloth vest with several pockets where weights can be added. The standard weight is 5% of the patients weight so in Olivia's case it's just 1.7 pounds. You wear the vest for 10-15 minutes and then if it is effective then the effects can last for up to 2 hours. The vest seemed to have calming effect on Olivia. As soon as the vest was on Olivia took her chewy tube out of her mouth, she stopped trying to chew the toys. Normally I have to hold Olivia on my lap during Occupational therapy to prevent her from running away and wandering around but with the vest on Olivia calmly sat and interacted with the therapist. It really was very interesting to watch. Olivia wore the vest for about 10 minutes but then during the rest of the session she seemed much more calm and able to follow directions. The entire thing was very interesting.

The speech therapist forgot the vest on Thursday but she brought it with her to Friday's session. Speech is more structured than Occupational Therapy. Olivia wore the vest for about 10 minutes at the beginning of the session and again it seemed to make a big difference. Olivia sat at the table throughout the session and even sang along with the "Wheels on the Bus" song and labeled some objects in a book. Fridays are busy days around here, speech is at 9am for 45 minutes followed by school from 11am to 12pm. When the teacher arrived she noticed immediately that Olivia seemed much calmer. Olivia was able to focus and follow directions so much better today. She purposefully played with the toys that the teacher brought and was able to complete several simple tasks with more independence than she's demonstrated previously. The difference really is quite remarkable.

I'm beginning to look forward to our next appointment at UNC Center for Development and Learning in July as part of Olivia's 12 month post-transplant studies. I won't go so far as to say that it doesn't still sting deeply when I think about Olivia's academic future but I am becoming more comfortable about navigating the world of special education. We'll be meeting at the end of the month to revise Olivia's IEP and I'm actually looking forward to the meeting instead of dreading it.

See Ya Next MONTH

Olivia and I headed to Duke today for our regular clinic visit. It is such a luxury to be able to leave Peter sleeping peacefully in his crib when Olivia and I make the trip to Duke. Peter and the babysitter get to have fun playing while Olivia and I got to spend some quality time together. It's a win-win for all of us.

Today Olivia received her monthly anti-pneumonia breathing medication. Everyone continues to be impressed by how well Olivia is doing. She was easily able to evade both Dr. Paul and Andre and run all the way down the hallway in a matter of seconds. We discussed the results of Olivia's 9 month post-transplant studies. Olivia's heart is functioning well and her lung function continues to improve. Her immune function is has improved from the 6 month post-transplant studies but we still have a ways to go. Basically Olivia's immune system is about a third as effective as a normal child her age. She still needs to stay away from large groups of people but most outdoor activities are ok. We'll need to balance being cautious and starting to get back to normal activities. As of today Olivia is totally off of her blood pressure medication AND the prednisone (one of the graft vs. host disease meds). Of course the prednisone is way to strong to wean off completely and even though we've been gradually weaning it for months we have to continue the gradual wean by switching to a small dose of hydrocortisone 3 times a day. Unfortunately Olivia's latest stool sample still shows signs of norovirus. Normal kids only have symptoms of norovirus for 1-2 days, Olivia has had it since NOVEMBER! At least she isn't displaying symptoms anymore, as long as her appetite is good and her weight is steady then there isn't any cause for concern. The big news is that our next clinic appointment is scheduled for JUNE 9th, a MONTH from now!

I'm excited but at the same time I feel like I'm waiting for the other shoe to drop. We've seen so many kids go through this process, some of them do well, some of them don't. I'm struggling, trying to find a reason, why is Olivia doing so well? When is the bad stuff coming? I just keep reminding myself that God has a plan, for Olivia, for the friends we've met along the way, for those who are no longer with us.

Copy Cats

Our next door neighbors have two little boys very close in age to Olivia and Peter. We're slowly becoming friends but Peter thinks these two boys are the coolest! We were out playing during the same time they were playing and Peter was watching the older little boy (who is around 3 1/2) very carefully. We each have fisher price cars and Peter watched our neighbor push his car towards the back of their yard so Peter very carefully did the exact same thing. Our neighbor tried to put his little brother (who is about 15 months old) in the car, Peter tried to put Olivia in the car but when she wouldn't comply he settled on putting the ball in the car. It was too funny. If you look closely in the background you can see the neighbor's car, parked in the background.

What a Welcome

When my sister Amy arrived a couple of weeks ago she got quite the welcome from Olivia. The second Amy got into the car at the airport Olivia started giggling. She giggled all the way home. She loves Amy. The clip is super short but you can hear Amy telling Olivia hi.

Thriftiness Check-In

One of my resolutions for 2010 is to be more thrifty. I went gangbusters clipping coupons for a while but now I think I may have come full circle. We have been able to significantly trim our weekly grocery budget. The coupons do work but it does take some time and effort. I do think it's totally worth it though to see the total drop by $25 or $30 as the cashier starts scanning those coupons. I'm also shopping at Aldi every other week. I've noticed that staple items (for us that includes things like milk, eggs, cheese, bread, bananas, and chips) are much cheaper at Aldi. I think that the real "money making" coupon stuff happens at places like CVS, Walgreens and Rite-Aid. Maybe I'll try that next month.

In general the cash envelope system is working wonders for us! I've also taken to opening up several savings accounts (it's super easy since you can do it all online with our bank, USAA). We have savings accounts for the items that we want to save for (patio furniture, vacation, etc.). I've also opened a savings account for Gas and now I can use the ATM card for that savings account to pay for gas at the pump instead of having to go into the store.

In the mean time I am loving all the free samples that we got in the mail this past week as well as the $3.00 checks that I'm getting from PineCone Research for taking surveys (I made $9.00 last month). I would share more about where I'm getting these free samples but to be honest I'm not really so sure where they are coming from (I think it's vocalpoint, and P&G)

FRG Fun

A couple of weeks ago we had our first official FRG event. Mike's battery went on their annual 20K ruck march and I assembled the FRG group to hand out water, gatorade and fruit at the finish line. It was kind of thrown together at the last minute but it seemed to go well. People were excited to greet their soilders and the guys were thrilled to be greated with refreshments! They began their march around 6:30 and finished the 20 K (a little over 12 miles) in around 3 and a half hours. Mike looks exhausted, I can't believe he had to go back to work for the rest of the day afterwards.

Messy Fingers

Camera Conundrum

You may have noticed that there have been quite a few photos on the blog lately. We do not have a new camera yet but we are trying to narrow down our choices and I need help! Mike borrowed a camera from work over the weekend so we could take pictures at the Rainbow of Heroes walk (and I also used it when the kids were playing in the sprinkler and the bubble bath). It was a Nikon, very fancy (and probably very pricey), we loved it. We took over 600 pictures in the few days that we had the camera. Someone also suggested that we might like a Flip camcorder to capture some of the precious moments that happen around here daily (all that immediately comes to mind right now is when Olivia bit Peter's finger because he put it in her mouth and then he responded by pulling her hair). You can edit the videos from the Flip to get still shots. I do love to capture a good video clip. There's also the issue of durability. I want to be able to capture these precious moments with stunning clarity but I also don't want to be afraid to take the camera places for fear that it might be damaged. This is a reality in our world as you may remember that our previous camera died when I jumped into the pool with it around my wrist.

Please share your thoughts, comments, reviews, etc. We know we want to get a DSLR. We'll mainly be taking pictures of the kids, they move quickly so we want the camera to be able to keep up. Does anyone have a Flip? Is it really as easy to use as it appears? Help!

The plan...

My only goal for Tuesday was to get to the Post Office. We got there but we learned that it's only open from 8:30-4:00 and closed from 12:00 to 2:00 for lunch. Must be nice!

Instead of mailing out the packages we spent the afternoon doing something else and loving it!












Bring on summer, we're ready for you!

B-U-B-B-L-E-S

Peter learned a new word during Aunt Amy's visit...."bubbles."

Wow

This morning as I was enjoying my coffee and doing my daily devotional there was a moment where I was truthfully and honestly thankful that Olivia has Sanfilippo syndrome because it's brought me a more personal relationship with God and a closer relationship with my husband. It's deepened my appreciation of motherhood, and enjoying life, and treasuring the simple things. This moment won't last forever, in fact the doubt and fear is already creeping back in but wow, what a moment. I want more of those!

"Create in me a clean heart, O God, and put a new and right spirit within me."--Psalm 51.10

"Lord, I don't want my soul to feed on empty pleasures, to long for what belongs to someone else. Instead, increase my hunger for you and create in me a pure heart, one that you will find irresistibly beautiful."

---All from the Catholic Women's Devotional Bible

FINALLY--The Rainbow of Heroes Recap

Olivia and Peter both took a nap today and while they were napping I had fun looking through all the pictures from the weekend and putting this slideshow together. There are just a few things that I think you should know that I just wasn't able to fit in......

• My sister Amy (Olivia's Godmother) was able to come into town for the event. Of course we would have loved to have all of our friends and family here but we know everyone was celebrating with us in spirit.


• Thank you so much to all of those who contributed to Operation Olivia. We were able to raise over $800 for the Duke PBMT Family Support Program! Special thanks goes to: Christy E., Aunt Ann and Uncle Michael, Christa H., Elena T., Joy G., Aunt Diana and family, Grandmother, my parents, Wendy and David L., Joe J., Rebekah D., Jasmine S.!!!!!!


• We also have to thank customink.com who provided the Operation Olivia t-shirts at a discounted rate and also make a contribution to Duke on behalf of Operation Olivia. The back of the t-shirt read: "Mission: Walk to support the Duke Pediatric Blood and Marrow Transplant Program and Celebrate Olivia on the 9 month anniversary of her transplant" I had hoped to mail the t-shirts out in time for people to wear them on May 1st but I wasn't able to get to the post office. I will get them out by the end of the week. We do still have a few tshirts available to let me know if you'd like one.


• Participating in the walk was an amazing experience that we hope to continue each year. We really enjoyed seeing all the people that we got to know so well during our stay in the hospital and our time in Durham. We saw most of the other patients who were in the hospital while Olivia was in the hospital. We also had an opportunity to remember and celebrate those brave heroes who are no longer with us. We love you Rachel and Aurora and we will always remember you.

Digital photo book made with Smilebox

Where does the day go....

So I had every intention of finishing the slideshow of photos from the Rainbow of Heroes walk to post today but then I got distracted by scrubbing all three bathrooms, doing 4 loads of laundry, 2 loads of dishes, cooking 3 meals for the kids, attending a 2 hour FRG steering committee meeting, and having a huge tickle fight with Olivia. Whoops :)

Olivia has been talking up a storm today, she told her babysitter that she wanted an "apple please" and then when I walked back in from my meeting and said "hi livey" she said "hi, hi you". I'm trying to just enjoy these words without over thinking them (how long will they stay, will she not speak at all tomorrow, did she really mean them or was she just using random words, were they meaningful to her, etc....the other sanfilippo mom's are sure to understand).

An Appetizer.....

We're still recuperating from our busy weekend but here's a peek of what's to come......


Mike brought home his fancy work camera for the weekend and we were able to take TONS of pictures over the weekend.

Stay Tuned

We've had a busy couple of days around here lately. Thursday included sessions with the speech therapist, physical therapist, and occupational therapist. Friday began with an FRG event and a visit from the school teacher and ended with a trip to the airport to pick up Aunt Amy. Saturday we headed to Durham to participate in the Rainbow of Heroes walk and ended the day with a Kentucky Derby Party at a neighboor's house. I was up pretty early to dro Amy off at the airport and on tap fo the rest of the day is menu planning and grocery shopping.

I've got tons of cute pictures to share and ideas for blog entries so stay tuned, there's more to come......