Snowy Snow, Brrrrr

We got some snow today in North Carolina. It was actually just sleet but it's just as cold as the real stuff and twice as messy. We spent 30 minutes getting everyone all ready for about 10 minutes of playing in the snow. I was so worried about Olivia getting too cold, she had on legwarmers, 2 pairs of pants, a t-shirt, a sweatshirt, a hoodie, 3 jackets, 2 pairs of socks, gloves, mittens and 2 hats--she was so bundled up that she could hardly walk!






















The snow is nice for now but I'm starting to get nervous about driving to Durham this week for Olivia's 6 month post-transplant tests. There's nothing I hate more than driving in wintery weather conditions and I'm dreading it!

Mommy Moment of the Week

I'm starting a new weekly post, my mommy moment of the week. I hope to share just one of the moments each week that make this mommy's heart melt. So here it is, my "Mommy Moment of the Week"

A Very Special Dinner Guest

We had a very special dinner guest tonight........Uncle David! Mike's brother David arrived home very early this morning straight from Afghanistan and we were thrilled to have him as our special dinner guest! Welcome home David! We're so glad you're back safe and sound. Olivia was pretty happy to see him. I really wish I had taken some pictures but I didn't even think about it until after the kids were in bed.

We had a busy day today. We left the house around 8am for clinic and didn't get home until after 4:30pm. It was a long day but things seemed to go well. It was really nice to have my mom there to help entertain the kids while we waited. Olivia's weight is all the way up to 15.6 KG so she's gained an entire KG since last week's visit. Her labs look okay. I did notice that when she was wearing her big green mask her respiratory rate increased quite a bit and it took her longer than usural to recover. This might be a sign that she's starting to get sick. I think almost everyone I know is sick right now, it's just that time of year. The plan is to give her some extra breathing treatments over the next few days and hope that helps. Most of Olivia's 6 month tests are scheduled for next week so we'll be spending a few extra days in Durham next week. After clinic we headed home with a quick stop at the grocery store for some supplies for our special dinner. My mom was able to run in while I waited with the kids. We got home just in time to put a yummy dinner together to welcome David home. The kids were exhausted from all of the excitement and the lack of naps today. I know we'll all sleep peacefully tonight!

Monday Moaning

My mom arrived on Sunday evening and I am so glad she's here!!!! Both Peter and Olivia were happy to see her. We all made the long drive from here to the Raleigh/Durham airport because Mike was still at work. We had a nice time catching up on the car ride and the kids were pretty well behaved.

It was really nice to have my mom here to help today but I think it was a bit of a rude awakening for her. Peter is as adorable as ever and is happy to have another person around to play with. Olivia, on the other hand, spent the entire day moaning and whining. Olivia weight is still steady but she just doesn't seem to be eating much so I called our nurse practicioner for some advice. We went through everything that has happened since he saw her in clinic last Wednesday. Olivia isn't having regular bowel movements, she won't poop for a couple of days then she'll have a couple of loose stools that smell pretty badly. According to my notes she's eating about the same amount. Despite all of my efforts she doesn't seem to be gaining weight and is starting to look pretty skinny. He called in an antibiotic to the pharmacy here in case it's C. diff (c. difficile click here for more info c. difficile). If it is c. diff then we started the antibiotic today and by Wednesday's clinic visit we will hopefully know if it has made a difference. We also talked a bit about appetite stimulants but at this point we'll just have to wait until Wednesday and see how things go.

It was a long day and I'm exhausted, glad that my mom is here to help!

We did make it home in time Sunday night to see the last quarter of the Saints game. I'm so excited for the Saints to play in their 1st Superbowl! You know who we'll be rooting for around here! Who 'Dat! Geaux Saints!

You're invited to my pity party

I just can't seem to snap out of this funk and even I am getting tired of my attitude so if you're still out there reading I have to apologize for my attitude and then applaud your dedication (or whatever it is that possesses you to keep on reading). Mike didn't get home until almost 11 PM and then he's been at work all day today. The sun was out and I thought some time outside might cheer us all up so I got everyone ready for a tricycle ride. As I was getting Peter changed and ready to go Olivia decided to throw up all over the place. She said she felt fine afterwards. This morning she happened to have her breathing treatments before breakfast so I just figured that the morning meds on an empty stomach gave her an upset tummy. As I stripped Olivia down to change her clothes so we could head out she proceeded to poop on the floor. She came running over to tell me she pooped but I didn't beat Peter to clean up the mess which created an even bigger mess. YUCK! On the plus side it was normal poop so the mess could have been worse. We finally get outside and started on our tricycle ride. It seems to be going well. Peter is waving at everyone, having a blast, Olivia is peddling along like such a trooper. We got about 200 feet from the house when Olivia stopped peddling and started puking again. My poor baby! We turn around and head home (which reminds me I still haven't cleaned the puke off the tricycle, I'll have to go take care of that fun job). It's mostly liquid so now I'm worried that it's the Pediasure, they were out of regular vanilla and only had the vanilla + fiber flavor, maybe it upset her stomach. Olivia keeps telling me she's okay and she was upset that we had to go home. The day drags on. I make lunch and try to clean up the house a bit. My mom is comming tomorrow and I feel like the house is a disaster. Finally it's 2 pm and I put the kids down for their naps. Somehow during Peter's nap he managed to get the tub of Desitin diaper rash ointment into the crib with him. This is the industrial size jar of the stuff that we got when Olivia was in the hospital. Somehow Peter opened the jar and got Desitin everywhere! It was all over the crib, caked on the sheets, matted into his hair, he reeked of Desitin. Peter had remains of Desitin around his mouth so I freaked out and called poison control. Peter had somehow managed to screw the top back onto the Desitin so it was closed tightly. I found the jar and it only looked like there were a couple of tablespoons missing. There was at least a tablespoon smeared on the sheets and his bear so he couldn't have eaten more than a spoonful. Poison control had me pry open Peter's mouth to see if there was any residue in his mouth or airway. According to the poison control lady it's more of a choking hazard than a toxicity issue. If Peter was up and acting like himself then he was most likely fine. She gave instructions about taking him to the doctor if he spiked a fever, started vomiting, etc. Meanwhile Olivia wakes up from her nap and starts singing about poo poo. By the time I get into her room I know that she's had a major accident. The room reeks! I get Olivia and see that she did indeed go poo poo and her pull up leaked and it's on her pants and sheet! YUCK again! Somehow I've finally made it through the rest of the day but now I'm watching Nancy Grace and that has got to be the most depressing show ever! I like Nancy Grace but this is awful!

Drained

This week has been emotionally and physically draining. When I look back on this week it's hard to believe that this "short week" seemed so long. I read something somewhere recently about how as a young mom you pray for physical strength and endurance to parent your young children but as they get older it becomes less physical and more mental and emotional and you pray for the emotional strength to get through the day. As a mom of a child with special needs I wonder if I'll ever get to that place when parenting isn't physically draining. At the same time I think that parenting a child with special needs is also a constant emotional roller coaster ride. I am exhausted by the time the kids go to bed. Mike has had a lot of late nights this week and that always seems to make the day drag on. I feel guilty for even being the slightest bit bitter about him working late--he's here, he isn't in Afghanistan or Haiti. I don't have any right to be upset about him still being at work at 10 pm on a Friday night but I am. I know it's not logical or rational but my logical, rational side is drained.

We learned this week that some dear friends lost a pregnancy to misscarriage. We share their pain and sorrow. We have also experienced the pain of misscarriage and even though it was several years ago the pain is still fresh. We still mourn for the baby that we lost, we still wonder if it would have been a girl or boy, we wonder how our lives would be different. You still begin creating hopes and expectations from the moment you know that you're pregnant and then they're ripped away in an instant. The timing is also very similar. We celebrated a Christmas knowing that we were expecting a baby and then began a new year with the knowledge that there wouldn't be a baby after all. I feel so deeply for them during this sad time.

This week another precious, brave boy lost his battle with Sanfilippo syndrome. This week I hate that I have to know what Sanfilippo syndrome even is! I hate that I know what it does to innocent children. I know that it's a long, hard road and that now this brave boy is at peace but it still hurts to know his life was cut so short.

I'm just drained this week. I am ready for it to be over.

Sisterly Support and Awareness

I joined a sorority in college. I'll be honest, I joined for fun and friends. I expected to make good friends and create memories, I did not anticipate that my sorority would grow with me as it has. I've gained mentors and leadership experience and now my sorority provides a wonderful opportunity for volunteerism. There's an article about Olivia in the most recent issue of our sorority magazine, The Crescent. It highlights the importance of Cord Blood Banking. When I read the article I was a little taken aback by how positive it was. They interviewed me several months ago, Olivia had just been released from 5200 and we were on such a high! We were just so happy to be out of the hospital. We're still optimistic but this process hasn't been easy. While the transplant is not a cure for SanFilippo syndrome we believe that in Olivia's case the potential benefits outweighed the risks. We did meet many children and families during our time on 5200 for whom umbilical cord blood transplant WAS a cure. This is an issue that will always be close to my heart!

Here's the link to the article (there's a picture of Olivia and I on page 3 and then the article is on page 22): http://www.gammaphibeta.org/crescent/pdf_archive/2010_1-Winter.pdf

Day +180, cross-dressing

Today we had beyond a long day at clinic. We got up and out the door on time. We arrived at clinic and I realized that I'd forgotten to bring a urine sample. We headed to a bathroom, hoping that Olivia would be able to provide to provide the sample. Unfortunately Olivia didn't need to pee but she did poop in the potty. I was especially relieved to see that she had pooped as she hadn't had a bowel movement since Saturday and I was starting to become concerned. Olivia was due for her monthly dose of IVIG so we headed over to the day hospital. Olivia got settled in and we found out that she'd lost some weight since last week. Shortly after we arrived the PBMT scheduler came in to let us know that she had called ahead and they might be able to get her in early for her Echocardiogram. WHAT? What echocardiogram? It turns out that they had scheduled Olivia's 6 month studies for today. I was livid! I had started talking about the PBMT scheduler in November about scheduling Olivia's 6 month studies. My Mom arrives on Sunday to take care of Peter so that I could focus on taking care of Olivia during the extra tests that I thought had been scheduled for next week. Apparently we had a major miscommunication and all of her tests were scheduled for today. Things went down hill quickly when I learned that Olivia was also due for her monthly anti-pneumonia breathing treatment. Things started heading downhill quickly! Peter was tired and ready for a nap but I wanted to keep him awake for a few more hours so that he would hopefully sleep during some of her other tests.


Why won't she just let me sleep? I guess I'll play peek-a-boo with the curtain.

Fortunately the PBMT scheduler was able to reschedule Olivia's echocardiogram and pulminary function tests for next week but she couldn't change the CT scan. I was able to keep Peter awake for a couple more hours and then he feel asleep just as they were starting the pre-meds for Olivia's anti-pneumonia medicine. The doctor and nurse practitioner came in for their visit. We're walking a really thin line here (pun intended) with Olivia's weight, she was down again to 14.6 KG. Olivia is eating well but as she's becoming more active she's also starting to burn more calories. She looks thin and doesn't have an ounce of body fat so if she's using more calories than she consumes then her body starts to use her muscle to fuel her body. Aside from her weight Olivia is doing very well. She's talking more and gaining strength. The consensus was that we aren't quite ready for an appetite stimulant but we are going to try a medicine to help her body absorb and digest the food. After the doctor left we finished up her breathing treatments and then we headed downstairs for the CT scan. Unfortunately Peter woke up as we got there for the CT scan. There's always a wait for the CT scan and today wasn't an exception. The CT attendant (I'm not sure what her real title is but she's the one who keeps people in the waiting area in line, she makes sure people drink their contrast solution and then gives them snacks afterwards) was really great about helping entertain Peter and Olivia. She told me that they wouldn't allow Peter in the room with us. I know that Peter has gone in before (and sat behind the double glass with the technicians) but I wasn't in the mood to argue today. A nurse came over and She did offer to watch Peter while I went in with Olivia. After the long day I'd already had I took her up on her offer. I got snacks, toys, and sippy cups ready for Peter and I headed into the CT scan room with Olivia. Olivia is becoming a pro at the CT scans. We stopped by the pharmacy to see if her medications we ready, they were not. We headed back up to so that they could deaccess Olivia's port and then we headed back down to the pharmacy. I was dying for a bathroom break and at that point I realized that I hadn't changed Peter's diaper all day. I had checked him right after we got to clinic and he was still dry then he was playing and then I put him down for his stroller nap and I hadn't picked him up yet. He was soaking wet, along with his pants and the stroller seat. I pulled out my spare outfit baggies. Apparently I had not restocked in a while, all I had for Peter was a onesie. I checked Olivia's spare outfit bag and found a pair of pink pants, those will have to do. The cross-dressing begins. I couldn't help but laugh every time I looked at him.


I can't believe she's making me wear these pink pants.





We stopped by the pharmacy to pick up our meds and then loaded up the car. We pulled out of the parking lot and headed home. We got home at 5:30, we had left the house this morning at 8:30. It was a long day.

Thank you God for giving me patience and a sense of humor. Thank you for the wonderful nurses and staff at Duke. Thank you God for the CT scan attendant who watched Peter and for the CT scan technicians who happily joined me in "Old MacDonald" and "B-I-N-G-O" during Olivia's CT scan. Thank you God for the peaceful naps that the kids both took on the ride home and the fabulous tunes on the radio to keep me company on the drive. Thank you for my wonderful husband who had dinner started and a cocktail waiting for me when we got home. Thank you God for sending my Mom to help next week!

Monday Moaning on Tuesday

Today is Tuesday but it felt like such a Monday! Yesterday Mike was off for the MLK holiday and he was nice enough to give me some time to myself. It was really nice to have someone else look after Peter during Olivia's therapy sessions (she had occupational therapy and speech). After her therapy sessions I was able to escape to the mall for some retail therapy and a movie. I think I had a little too much relaxation time yesterday because today was a rude awakening! Olivia was grumpy all morning. She refused to eat, she spent all morning whining and moaning, it was obnoxious. I found myself desperately praying for patience several times throughout the course of the morning. I got Peter settled down for his morning nap just in time for Olivia's physical therapy session. She actually had a really good session today. Olivia worked really hard, so hard her little legs were trembling. It's so hard to see how weak she's become. Today she did some stretching and jumping. The weather here today was beautiful so we finished the session outside on her tricycle. We were all impressed with how hard Olivia worked today and the physical therapist was able to get a better idea of how Olivia is doing. Unfortunately she's even weaker than she initially thought. Olivia has to work really hard to get up to a standing position so she's taken to just scooting or crawling somewhere instead of getting up to walk. I know that I do more for her than I should. As a mom it's really hard for me to push her instead of just nurture her. I can't just give her the juice I know she wants, I have to make her use her words to ask me for it but now I have to start making her walk into the kitchen and find her cup and then have her ask for the juice, etc. It's exhausting. I know if will help her in the long run but I am constantly trying to find the right balance between pushing and nurturing, encouraging her and then comforting her.

Olivia was exhausted after physical therapy and was falling asleep during lunch so I thought she would be ready for her nap. Unfortunately Olivia had other ideas. She laid down for a bit but then got out of her bed. She snuck into Peter's room just after he'd finally fallen asleep and then woke him up. It was a beautiful day so we headed outside again. Olivia said she wanted to ride her bike so I attached the tandem seat to her tricycle and we all headed out for a ride. Things went splendidly for the first 500 feet and then things started going downhill. Olivia refused to stear so I was having to re-adjust our course every other step or so. Olivia got tired of peddling and then she didn't want her feet to be on the peddles so she dragged her toes on the ground. Peter thought that was hilarious so he did the same wore holes in the toes of his shoes. I should have just turned around and headed home but I was committed. We slowely, painfully, made our way around the block. Olivia was moaning the entire time, Peter was having a great time. I was exhausted. We finaly made it home and Olivia continued her moaning. Mike called so say he was planning on leaving the office around 6pm. I was done, emotionally and physically. I gave up and ordered pizza for the kids for dinner and put some chicken on the grill for Mike and I. Mike finally got home around 7pm. I'm not looking forward to tomorrow at all. Olivia has her weekly clinic visit and I think she's due for her monthly IV infusion which means a longer visit. There is a silver lining, my mom is coming for a visit next week, I'm really looking forward to seeking her and getting some help!





Don't they look miserable. Peter had a blast and was waving at everyone the entire time, the louder Olivia moaned, the more he waved.

Who Dat?

Geaux Saints! If the Saints make it to the Superbowl we might have to get Olivia a new outfit in her size (this one is 18-24 months and she's worn it for 3 seasons now).

Out for a stroll

After almost 3 years of living in the pacific northwest I've learned to take advantage of the nice days. It is beautiful there but the sun doesn't always come out to play. Today was sunny and warmer than it's been in a while so we went for a long walk today. Gotta love this mild North Carolina weather! We rescued a lost dog and took him back to his owner, we stopped to play at the park. It was nice to get outside and enjoy the beautiful day. Olivia had a good time playing but it was hard work. She climbed up the stairs to go down the slide all by herself 3 times! She ran and pushed Peter on the swing. She worked up quite an appetite and ate a huge lunch when we got home.

Splish Splash!

Wonderful Wednesday Clinic Visit

I was more nervous about today's clinic visit than I had been about an appointment in a while. Olivia has been snacking pretty much non-stop since our visit last week but she didn't seem to be gaining weight. We got up extra early this morning so I could make sure she had a good breakfast before we went to clinic. Inevitably the earlier I get up to try to get us out the door the later we end up leaving so we didn't get to clinic until after 10:30 this morning. We got into a room and then waited for the big moment...the scale. I had been a nervous wreck for no reason, Olivia's weight this morning was exactly 15 KG! No nose tube! I showed our nurse practicioner my notes of everthing that Olivia ate and drank over the last week. He sent a copy to the diatician and they were both impressed by the variety of foods Olivia is eating. She refuses to eat anything I actually cook, she'll eat snacks that I prepare at home but other than that she only wants chicken nuggets, french fries, and pizza. Ideally they'd like to see Olivia around 16.5 KG so she still has a bit more weight to gain. At least the concern about an NG tube is gone for now! Since we got there a little later in the day it seemed to take a little longer for us to get Olivia's lab results and get seen by the doctors. Dr. Paul was very impressed with how Olivia is doing. Olivia was so happy to see him by the time he finally got to our room that she was quite talkative and she told him all the colors on her flash cards and then even told him that he was wearing a pink shirt. To be fair the shirt was pink and blue stripes but pink is Olivia's favorite. Then she asked Dr. Paul to help her get down and put her boots on. Dr. Paul has 2 little girls of his own so he's really very good with her. It was fun to watch them interacting with each other. The best news from today's visit is that they are going to continue to decrease her steroids! As of today Olivia is on a small enough dose that it's no longer considered therapeutic. This means that she's not getting enough of the stuff to cause any of the nasty side effects and her muscle tone should rebound quickly. Other than that they are going to begin drawing blood for Olivia's 6 month post-transplant tests next week. The 6 month post-transplant tests include some cognitive and behavioral testing as well but those are scheduled for the first week in February. Olivia's 6 month post-transplant date is actually January 23rd but we had some scheduling issues so most of her other tests will end up being a week and a half past the 6 month mark but it shouldn't affect the results too much.

It's been entirely too long since I've posted pictures so here are some from our clinic visit today.

Apparently Olivia thought that Peter needed a pat on the back.

Tuesday's Gone

and I am happy to see it go!

Today Olivia had back to back therapy appointments, Physical Therapy followed by Speech. I tried to plan accordingly and was able to delay Peter's morning nap until immediately before the first therapist arrived. Olivia was excited to see the physical therapsist initally but then things went down hill quickly. Olivia tends to like enthuiastic people, I'm pretty enthuisastic and peppy most of the time so she relates well to people like that BUT Olivia doesn't really like "in your face" enthuiasm and cheerfullness. The physical therapist is trying hard and I think that Olivia somehow decided that she's trying too hard and decided that she doesn't want to respond. Olivia spent the entire time grunting or crying. It was painful for all of us. Olivia is being pushed to do things that she doesn't want to do but she needs to do them so that she can get stronger. The speech therapist arrived just as the physical therapist was finishing up so I ran downstairs to let her in as Olivia was coming down the stairs with the physical therapist. I slipped and fell down the stairs right in front of the physical therapist. I'm totally fine, fortunately I have plenty of padding, just embarassed!

As soon as Olivia saw the speech therapist she walked right over to her and said "hi". This is after we all sat through a painful hour of her grunting and crying at the physical therapist. I felt so bad for the physical therapist, she had tried so hard to get Olivia to relate to her. The speech therapy session didn't go much better than physical therapy but Olivia did talk some. Peter woke up midway through so taht did make things a little more challenging. I'm just glad we got through the two sessions.

I finally was able to connect with the preschool coordinator in our new school district. Things sound promissing but we'll see how they progress, it's too soon to say for sure. I do know that they will be able to provide home based services and we should start early next month.

I'm still anxious about Olivia's clinic appointment Wednesday. She's eating but not gaining weight. For now I'm just glad that Tuesday's gone and we can worry about tomorrow tomorrow.

Monday Ramblings

I think I had one too many cups of coffee this morning and have been a little hyper all day so here's the random things going through my mind today.....

• I am actually really glad that I didn't go back to bed this morning at 5:30 when Mike was banging on the window because he'd locked himself out of the car.
• Speaking of getting up early, I love the new elliptical machine and I wonder when I'll stop calling it the "new" elliptical machine.
• Speaking of working out, I'm really proud of myself for not eating any of Olivia's peanut butter M&M's!
• Speaking of Olivia eating, she's eating almost constantly but she's not gaining any weight! I'm nervous about Wednesday's appointment.
• Speaking of Wednesday's appointment, I am excited to report to Dr. Paul how impressed the physical and occupational therapists are with Olivia's progress
• Speaking of Olivia's progress, I love her new therapists and I've even happier that Olivia seems to like them too, even when she gets mad at them for making her work hard.
• Speaking of Olivia working hard, it amazes me how easy so many things are for Peter. Now I realize that he just naturally does so many of the little things that I worked so hard to help Olivia learn to do. I hate that SanFilippo syndrome brings so much bittersweetness (is that even a word) into our lives. It's sweet to see Peter do new things, but bitter to know that Olivia had to work so hard to accomplish those same things.
• Speaking of being a mom of kids with special needs, I am absolutely all for awareness and finding a cure and fighting but for now I think I need to take a break from all of it
• Speaking of taking a break from all of it, I know my friend A. knows what I'm talking about, her mom recently passed from Breast Cancer but she's struggling to jump back on the Breast Cancer Awareness/Research Support/etc bandwagon. While I haven't faced anything nearly as devastating I know exactly what she's talking about but she's able to express herself so much more eloquently.
• Speaking of friends, I had a fantastic conversation with a friend today and I love that we know exactly what the other is trying to say, I wish we lived closer to each other.

Can you tell we've been reading a lot of those "If you Give a Mouse a Cookie" books? Olivia got several of them for Christmas and we've been reading them often. If you don't know what I'm talking about you'll have to stop by your library and check one out

Thrifty in 2010

For our family it's an absolute blessing that I'm able to be a stay-at-home mom these days. However the transition from being a two income family to a one income family is always difficult. I think Mike and I both felt that we had prepared well for our marriage, we went to all the marriage preparation classes, we even attended an Engaged Encounters retreat sponsored by our church. The one area in which I feel we were completely unprepared was finance! To be honest it just never really came up. We both came from completely different places. I was more of a have money, spend money, kind of gal. It's one of my New Year's Resolutions to be more thrifty in 2010. To that end we've made some changes in the way we budget and spend our money around here.

First we are trying to use cash rather than our debit card as often as possible. At the beginning of the month I withdrew a large sum of cash from the ATM then I divided it up into envelopes for different categories....groceries, entertainment, etc. If you haven't heard about the envelope method you google it, I was surprised to see it in Wikipedia (although I'm not sure why, everything is in Wikipedia). So far it's working really well for us! I was definitely guilty of just tossing random little things into the grocery cart. Knowing that I only have a certain amount of cash to pay for everything in the cart has made me more selective.

I'm also debating cutting coupons. I know that some people are totally obsessive about it and that their hard work really pays off. I'm just not sure that it will work for us. Olivia is a really picky eater lately so I think a large portion of our grocery budget is spent on getting different snacks and treats for her. It seems like it can be really complicated. I generally try to shop at the commissary on base where you don't pay any tax and I had always thought I was getting a great deal. I just realized that they charge a 5% surcharge which can be more expensive than tax! I'm just not sure I'm ready to commit to the coupon thing. Does anyone have any success or failure stories that might help me decide?

My favorite discovery of the weekend was Aldi grocery stores (http://www.aldifoods.com). I had read something somewhere about Aldi and I was excited to see one when we were driving around the other day. I made my first trip there over the weekend and I was pretty impressed. It's a different shopping experience. It's similar to a SAMS or COSTCO but they primarily have grocery items and there are not any membership fees. There are not any store displays or decorations and the store itself seems smaller than your typical grocery store. You rent your cart for 25 cents, when you return your cart then you get your quarter back. You also have to bring your own grocery bags and bag your own items. It sounds a little strange but I know that Aldi is also owned by the same company that owns Trader Joe's and I'm a huge fan of Trader Joe's. It turns out that the Food Network has even done a special on Aldi's and many of their store brand items are actually regular old name brand items that have been repackaged as the Aldi brand items and sold at a discounted price. In any case I went over the weekend and got some really great deals! Mike was more than $1 less than it was at the Commissary and eggs and bananas were much cheaper! They even had beer and wine! If you haven't been to Aldi's and there's one near you check it out!

If you have any other ideas about thriftiness please share! I'd love to hear 'em!

Will you be my friend?

I am so blessed to have such wonderful friends in my life. I love that my friends inspire me to be a better wife and mother. I have a couple of friends from high school and several sorority sisters from college that I'm still very close with. There are a few friend from grad school that I think of often. Thanks to email, facebook, and blogs these people are all able to maintain an active presence in my life. I treasure their encouragement and insight.

Of course I still crave that good old face-to-face friend time. A downfall of being married to someone in the military is that you move often. Daily life is very routine, it's comforting in it's consistency but the people and places that are part of life change often. I've gathered a handful of friends from the various places we've been stationed. I have my friends from Colorado, and my friends from Washington, my friends from South Carolina and Oklahoma. I treasure them so much! The majority of them are fellow army wives but there are a few friends from work or neighborhoods where we've lived. Today I was blessed to talk to several of these friends today. We've recently learned that one of our friends who we were so excited to be reunited with here at Ft. Bragg will be moving away but at the same time other friends will soon be moving here.

At this point I'm a little apprehensive about making new friends here at Ft. Bragg. I feel like I have so much baggage! I met my next door neighbor recently. Right after the moving truck had delivered our stuff she came over to introduce herself and brought us a pumpkin pie. Of course I was still in Durham so I hadn't had a chance to meet her yet. She seemed absolutely charming and has 2 adorable boys the same age as Olivia and Peter. Things were going well until she suggested a playdate and then I froze. Where to begin....We've been through so much, how do I begin to explain...even now I am not sure where to start. I would love to make some friends and have a little time away from from the house for a bit but then I don't want to be dishonest and unauthentic by not discussing what has happened over the last year. I know that by the time we leave Ft. Bragg I will have gathered a few more friends to treasure but I so dislike this process of getting there. It's like dating. You meet so many people before you feel that spark that grabs your attention and inspires you to invest your time really getting to know someone. Our new neighborhood has a monthly Bunko group and I went this past weekend. I had a great time and really enjoyed meeting some of the other women. I also realized it was the first time I'd had a girl's night out since the end of June before Olivia's transplant! It turns out that many of our neighboors have kids exactly the same age as Olivia and Peter. I'll have to ask Dr. Paul about when Olivia is able to be around other people so that maybe she can start to make some friends here too!

TGIF

This week we had home visits from the occupational therapist, speech therapist, and physical therapist. We had a long drive to and from Durham for clinic that included a stressful car accident. We ran out of coffee on Tuesday. On Thursday Peter broke the handle off of the toilet in the kids bathroom. I spent 45 minutes trying to fix it and finally succeeded only to realize that I put it back together backwards so to flush you had to lift up. No matter because Peter broke it off again on Friday morning. Peter also managed to turn on the water in the tub in our bathroom and then plunge my hair straightner into the tub full of water. Thank God that it wasn't plugged in. He then took the same beloved hair straightner and beat a wall outlet with it until the wall outlet cracked and broke off. Peter finished off the day by pealing a raw onion then taking about three bites out of it like it was an apple. I'm not sure where he got this idea since I've never given him a whole apple. Then he proceeded to spread said raw onion all over the kitchen walls. TGIF!!!

Olivia's Hunger Strike Comes to an End

I am very happy to report that Olivia's hunger strike seems to have come to an end. Yesterday they stopped one of Olivia's antibiotics and I guess it really had been doing a number on her stomach because she ate well all day. Olivia had been on Zyvox to treat her persistent sinus issues. Common side effects of Zyvox include: Bad taste in mouth, constipation, diarrhea, dizziness, headache, nausea, tongue discoloration, trouble sleeping, and vomiting. They started her on a liquid suspension 3 times a day but it tasted so awful that she couldn't get it down. I tried it and it made me vomit. So they switched her to a pill. She was on an adult dose, 200 mg three times a day so we are very glad to be done with this nasty med! She had a wide variety of foods today and while she didn't eat any real meals she did snack consistently throughout the day. She ate Cinnamon toast crunch cereal, toast, chocolate covered pomegranate seeds, BBQ potato chips, Doritos, Spaghetti noodles with butter and Parmesan cheese, hot dog, popcorn, chicken nuggets, french fries, ravioli, apple, and to top all that off she had 3 Popsicles before bed. Just thinking about all of that gives me a stomach ache! She also drank almost an entire pediasure.

I think that Olivia is also in a much better mood now that she's off of the yucky zyvox. There were several times today while we were playing that she was laughing so hard that she started to cry. It was the cutest thing ever. It was hilarious and I know that my laughing was encouraging her. Peter even got in on the act when he realized that climbing into the laundry basket with the socks was making his sister laugh. We all laughed so hard we were in tears! So precious! It is really fun watching them play together.

"Are you Kidding Me!!!!"

Today Olivia had her weekly clinic appointment in Durham. It's really cold here so it took me forever to get the kids bundled up and the car warmed up. Fortunately it's dry so the roads were nice and clear, no ice or snow to have to deal with. We got to clinic and things went smoothly. Olivia's port worked beautifully, they drew her labs which look fantastic. We saw the doctor quickly and everyone was very impressed with how well Olivia is doing. The one area of concern is her weight and it's a big area of concern at this point. Olivia's weight is down to 14.6 KG, during her pre-transplant work up she was 17.2 KG and when she was discharged from 5200 she was steady at 16.8 KG. She hasn't seemed very interested in food this last week. She never seems to want to eat during meals and just seems to snack all day. At this point she's got to gain some weight. Dr. Paul had to give us an ultimatum today, if her weight isn't up to 15 KG by next week then they will have to insert an NG tube (a tube that is threaded up her nose and down her esophogus into her stomach and liquid food will be pumped directly into her stomach). Obviously this is not something we want to do so our #1 goal for the next week is to get Olivia to eat. I spoke with the dietician who was helpful about giving tips to increase Olivia's calorie intake. We finished up with clinic after about 3 hours and headed home.

I bundled up the kids and headed home. As we passed a McDonald's Olivia said she wanted chicken nuggets. Great! A happy meal for you! I had just ordered her happy meal in the drive through (requesting that they make the nuggets and fries fresh for Olivia) and pulled ahead to pay. It was lunch time so there was a line in the drive-thru. I was waiting to pay when I see a car across the parking lot start to back up. At first I thought nothing of it but then the car seemed to be getting a little close. I gave a friendly honk encouraging them to turn and to my alarm the car started gaining speed. The car was getting closer and closer and I kept honking. I couldn't pull forward, there was a car in front of me. I couldn't go backwards there was a car behind me. I was able to back up about a foot just in time for the car to crash into the passenger side bumper. I'm glad I backed up, I think that more damage would have been done if to the side of the car if I handn't been able to back up. The car was completely empty. It was a standard and it didn't look like it was in gear. I just sat there, waiting for the owner to return to her "run away" vehicle. It didn't look like there was too much damage. We exchanged info, I got the contact info for the man behind me in the drive-thru as well as the cashier at the window who saw everything and we were on our way. I had Mike look at the ar when he got home. He agreed that the damage is minimal but there did seem to be a leak under the car. We'll get it checked out this weekend and see where to go from here. Sheesh! What a day!

Stay-at-home-mom Monday

I think that today was the perfect example of a stay-at-home Mom day. There were highs and lows, giggles and tears, messes and tantrums, it was exhausting and fulfilling. Don't get me wrong, I love that I'm able to be a stay-at-home mom, I know I'm very lucky! But if I were to say that I wouldn't trade it for anything in the world I would be lying. I wish I could find the perfect well-paying, part-time job with a fantastic group of people doing something that I believe in where I feel valued and respected....doesn't everyone want that? Maybe the perfect opportunity will come along someday but for now I'm happily content to be a stay-at-home mom.

In any case today was one of those days where we seemed to go through our routine, we didn't do anything exciting, it was a typical Monday. I got up early so that I could put our new elliptical machine to use, got the kids up, made beds, made breakfast, gave Olivia her meds, cleaned up, got through Olivia's visit with her occupational therapist, put Peter down for a nap, cuddled with Olivia during her breathing treatment, played with Peter when he got up from his nap, made lunch, clipped coupons, refereed fights, chased Peter up the stairs, soothed tantrums, cleaned up, played games and sang songs with the kids, took pictures, worked on potty training Olivia, made dinner, and the list could go on for paragraphs....

Olivia is feeling better but she's not eating much. I'll make her something and then she'll enthusiastically take two or three bites but that's it. She's doing ok on the potty training, she's consistently having just one or two wet accidents a day. She's getting stronger and more independent, she can go up the stairs all by herself. She had her 2nd visit with her home-based occupational therapist today. I love the occupational therapist. She's great at relating to Olivia, she knows just how hard to push Olivia without pushing her too hard. She's so understanding about Peter being in the mix during Olivia's therapy sessions. I think we will all enjoy having her in our home once a week.

I did take these pictures today. Olivia brought me her headband and said "pretty" so I put it on her and she was clearly very please with herself. So adorable. Peter noticed that Olivia was sad so he crawled over to comfort her.

Memories

Mike and I got started on one of our resolutions for 2010 over the weekend.....being able to actually park cars in our garage. Mike found some heavy duty shelves on sale at Sears and he put them together over the weekend. We took the time to go through some of the boxes labeled "Memories" over the weekend. We have boxes full of special baby clothes for both Olivia and Peter. It sweet to look back at each of their "home from the hospital" outfits, their Christening outfits, the dress Olivia wore the day Mike came home from Iraq in 2006. It's funny how many more of these cute outfits we have for Olivia than we do for Peter. Olivia's little dresses are just too precious to get rid of but we didn't seem to have any trouble getting rid of Peter's plain 'ol boy clothes. Both Mike and I each have our own "memory" boxes. Mine includes my high school Letter jacket (I lettered in Cheerleading) along with pom poms and old cheerleading uniforms. There are several pairs of pointe shoes. I was really into ballet until I started high school. There are old pointe shoes that with a "made in the USSR" stamp. I remember the ballet studio I attended would submit bulk orders of the specially made shoes and import them from the USSR. Obviously this occurred before 1991. Mike's box was just as amusing, it includes his high school class ring along with a list of the most important things in pop culture that year.......song: Crossroads, movie: The Bodyguard, World News: water on Mars.

It was also a weekend of memories in the kitchen, yummy! I made a big batch of tortellini soup a recipe from a work colleague in Colorado. I made a double batch of my friend Dan's famous chicken enchiladas (one pan went straight into the freezer), I also made two batches of lasagna (again one ban went straight into the freezer), it was the first thing I ever cooked for Mike. He came over to my college apartment for dinner.

Now our garage is organized and the freezer is stocked! What a way to star the new year!

2009, A Year in Review

I wasn't going to spend too much time reflecting on 2009, in so many ways I'd rather just be done with it. But I've enjoyed reading the "year in review" posts from so many of our friends and family that I decided to do one of our own.

January

*I discovered a clinical trial at Duke University where Umbilical Cord Blood Stem Cell Transplants were being used to help slow the progression of SanFilippo syndrome*
*Mike spent a couple of weeks for military training and got to see Death Valley*

February

*I got lots of practice parenting 2 kids while Mike was away for more training in California*
*We received official word that Mike would be deploying to Afghanistan instead of Iraq*
*We had a phone conference with our pediatrician in Washington state and the doctor at Duke to learn more about the Umbilical Cord Blood Transplant and if it would be an option for Olivia*
*I resigned from my volunteer role with Gamma Phi Beta Sorority*
*My Mom flew up to Washington for a quick visit*


March

*We traveled to Duke so that we could learn more about Transplant and see if Olivia would be an ideal candidate*
*After prayerful consideration we decided that Olivia would ultimately benefit from transplant and began the process to obtain approval from our insurance company*


April

*Mike requested a compassionate reassignment to Ft. Bragg*
*We received our 1st and 2nd denial from the insurance company for Olivia's transplant*

May

*After a phone call with 2 of our Congressional representatives (Mike is a registered Colorado voter while I was a registered Washington voter) they petitioned our insurance company on our behalf*
*We received the news that the insurance company WOULD approve the transplant*
*Mike's reassignment was approved*
*We sold the Durango and traded in the Audi and bought a new car. I love the Acadia and I'm so glad we didn't have to drive both cars cross-country*

June

*We packed up to move and all of our belongings were put into storage*
*We said goodbye to our friends in Washington and started our drive from Washington to North Carolina*
*Olivia began her pre-transplant work-up*
*we soaked up every second of time we had together as a family*
*My parents flew to North Carolina for a quick visit and they took Peter to live with them while we prepared to move into the hospital with Olivia*

July

*We got to spend some time with Mike's brother and his family for the 4th of July weekend before he headed to Afghanistan*
*We celebrated Olivia's 3rd birthday with bowling*
*Olivia was admitted to the hospital, made it through chemotherapy, and had her transplant*
*Mike reported for duty at Ft. Bragg*
*We all missed Peter terribly*

August

*Olivia was in the hospital*
*Mike worked during the week and moved in with an old friend from Ft. Carson, CO*
*Mike came up to Durham on weekends*
*We all missed Peter terribly*

September

*Olivia was released from the hospital*
*My Mom and Peter came to Durham for a quick visit*
*My Mom loaned Mike her truck since we would now need two cars*
*My sister Amy, came to help for a month while we re-adjusted to live outside the hospital*
*We learned that our insurance wouldn't cover any of our living expenses post-transplant*
*We missed Peter terribly*

October

*My mom's truck was stolen from the driveway of the house where he was living in Fayettville*
*The truck was found with minimal damage*
*My parents came to Durham for a quick visit*
*We were reunited as a family, Peter came home*
*Mike began house hunting in Fayettville*
*Mike flew to New Orleans to drive with his mom back to North Carolina*
*Olivia and Peter were Thing 1 and Thing 2 and the Duke PBMT Halloween Party*

November

*We found a great, SAFE, place to live near Ft. Bragg*
*Mike's Mom arrived to help us make the transition to Ft. Bragg*
*Mike and his mom moved into our new house near Ft. Bragg*
*We moved to Ft. Bragg for almost a week but Olivia got sick and we returned to Durham*
*Mike's brother came down from Washington DC for a quick visit*
*Mike's parents gifted us with their Explorer so we became a 2 car family again*
*Mike's Mom returned to New Orleans*
*We celebrated my birthday and Thanksgiving*

December

*We learned that Olivia had norovirus and we'd be in Durham for a couple more weeks*
*Peter took his first steps*
*We moved out of the Durham apartment and into our new house near Ft. Bragg*
*We celebrated Christmas as a family*


Now that I've typed all of that I still think that 2009 was a depressing year! I'm glad it's over but I'm also glad that I went through this little experience to remind me of how far we've come in such a short time! Here's to 2010 being a better year!

Christmas 2009

After I accidentally deleted almost all of our pictures from Christmas morning I was too depressed to post much about Christmas. I've recovered from my minor depression and I still have a few more things things that I wanted to share about Christmas 2009. We all had an amazing Christmas this year. The kids were both overwhelmed with toys and Mike and I were once again overwhelmed by the generosity of our family and friends. The Duke PBMT program has a relationship with Hendrick Motor Sports. The Hendrick "Pit Crew" visits 5200 four times throughout the year and brings some much needed excitement to the unit. They bring toys for patients and their siblings. In addition to these visits they also adopt PBMT families for Christmas. Despite spending almost 3 months as an inpatient on 5200 we missed visits from the "pit crew" by about a week before Olivia was admitted and after she was discharged. When we learned that we had to go back to Durham after our first brief stay here in Fayettville back in November our social worker insisted that I provide her with Christmas lists for Olivia and Peter just in case we were in Durham for Christmas. I did give end up giving her a list and I'm so glad! The day of our list Wednesday visit in Durham I stopped by the PBMT offices to pick up the wrapped presents. I was expecting just a few toys but was completely overwhelmed when I found three giant bags full of wrapped toys. Christmas morning was so much more exciting for all of us because we had no idea what the bags included. The Pit Crew was incredibly generous and thoughtful! Olivia and Peter received clothes, puzzles, books, toys, everything they could have ever wished for. It was such a special experience to have a Christmas morning full of surprise and excitement.

Now for our favorites.....

My favorite gift this year was a Bump It from my sister-in-law. I love it! It made me laugh out loud and I couldn't wait to try it. I don't think I've quite mastered the technique but I'll keep working on it :)

Peter's loved everything! I'd have to say his favorite would be a tie between the Walker/Block Wagon from my sisters and the really cool musical instruments from my Aunt Diana and family.

Olivia's favorites are her Little People Farm and her books. She got several books for Christmas ("If You Give a Mouse a Cookie", "If You Give a Pig a Party", "Cloudy With A Chance of Meatballs", "Pickles to Pittsburgh", and a "Dora Musical Adventure Storybook") and she loves them all!

Mike's favorite gift (aside from his itouch that he got on black Friday) are the T-shirts I got him from DirtyCoast. I don't remember where I found this company but they have fantastic t-shirt designs specific to New Orleans and Louisiana. His favorite this year is his "Kenna Brah" t-shirt. After all where else can you find the airport, a casino, a Rivertown, a Laketown and the home of the drive thru daquiris? In Kenna of course (pronounced Kenner by those of us not from the New Orleans area).

Finally I am very pleased with how the Christmas gifts I made came out. Since I couldn't get out of the apartment to shop I decided to make gifts this year. It was quite economical and I loved the time I got to spend with Olivia and Peter making them, we all had fun. So much less stressful than shopping in the crowded stores. Since everyone has received their gift I can finally post a picture! We put together a White Chocolate Cherry Cookie mix in a jar. Then I used the free photo Christmas cards from seehere.com to create the recipe instructions. I think this may become a new family tradition!