Goodbye 2009

"Beginnings are scary. Endings are usually sad, but it's what's in the middle that counts. So, when you find yourself at the beginning, just give hope a chance to float up. And it will."
Sandra Bullock, in the movie Hope Floats

I don't particularly love that movie but I do love that quote. I am not sad to see 2009 end. It's been a very long, hard year. I'm not really scared about 2010 beginning but I am giving hope a chance to float up! I have a lot of hope for 2010. I don't know what this year will bring, but I hope it's better than 2009!

Busy Busy

Olivia had her weekly clinic visit in Durham on Wednesday and it was a busy day! Fortunately Mike took the entire day off so we were all able to go together for a change. It was really nice to have the company! Since Mike was here it was so much easier to get out of the house on time and we actually got to clinic early! Olivia's clnic visit went really well. Her weight is steady, her labs look great. They were able to decrease her steroids again. We were in and out of clinic in a couple of hours. While Olivia and I were at clinic Mike took Peter over to the eye center so that they could replace Olivia's glasses. Olivia got her glasses in July and we're already on her 3rd pair! Thank goodness for the warrenty. Olivia broke her glasses the very first day that she got them but since then she's been very carefull and responsible with them. Peter, on the other hand, is not so careful with them. Earlier in the week I took the kids for a walk in our neighborhood. They sit closer together in the jogging stroller and Peter took Olivia's glasses off of her face and pulled one of the ear pieces off. Whoops. They quickly replaced them and we're back in business.

After Olivia's clinic visit we headed towards Raleigh to pick up an eliptical trainer that Mike found on craigslist. Our Christmas present to ourselves this year was an eliptical trainer. After all of the time in the hospital and then in the apartment my waistline could definately use the help! Going to a gym is out because Olivia can't go to childcare or any public places for that matter. I take the kids for walks when I can but it's pretty cold out there and I worry about Olivia getting too cold outside. I think I'm going to love our new eliptical!

We headed back to Ft. Bragg just in time for me to make it to my doctor's appointment. I've been having some serious back pain for the last 4 weeks or so. I was really worried that I'd done some serious damage to my back. Once I am up and moving I seem to be fine but it is a really painful process to get up and out of bed in the morning. The doctor assured me that it is not a serious injury but rather the result of a couple of pulled muscles. She gave me some muscle relaxors and some pain medication and I am already feeling much better. She gave me a stern lecture about not carrying Olivia. I was too scared to tell her that I often carry Olivia and Peter and the enormous diaper bag. I'm glad that after just one day I seem to be feeling much better!

We had a long busy day but I'm glad we got so much accomplished. We're having a pretty laid back New Year's Eve this year. We're just excited to be able to spend it together. We wish everyone a happy, healthy, and safe 2010!

W-A-L-K-I-N-G

This afternoon Peter stood up and took about 12 steps by himself and he hasn't crawled since. Watch out folks, we officially have another toddler in the house! This darling little boy is just full of personality today. Later on in the afternoon he walked over to me and then chunked his empty cup at my head. Thirsty much?

Glimpses of our little girl

We were expecting the inpatient phase of Olivia's transplant to be the worst but because we were anticipating it didn't seem so bad. The last 5 weeks have been the most difficult. Olivia wasn't herself and we didn't really know why. We did see glimpses of the "old Olivia" here and there but she wasn't really there. I think that over the last couple of days we seem to have turned a corner and we're seeing more and more of our little girl. At dinner tonight she finished her entire meal and even used her fork appropriately. She was so proud of herself, her eyes were shinning. It was beautiful to see the "old Olivia". I hope we get to see more and more of her!

Pouting and the Park

Olivia wasn't really herself on Christmas but she's feeling much more like herself lately. After a couple of days of careful observation we are certain that Olivia is struggling with some behavioral challenges. For months now we've been at her beck and call. She didn't have to use her words to tell us what she wanted, we jumped and got it for her before she could even express what it was that she wanted. We got her anything and everything she wanted to eat, she got our full attention at all times. Everything was put on hold, as it should have been, for Olivia. Her care and happiness have been our main focus for the past several months. As we moved back together as a family our priorities shifted, as they should. Of course Olivia's care and happiness are at the top of our priority list but she's physically well her needs don't have to be met at the expense of everyone else in the family. We're making this transition and Olivia has been acting out as a result. After a long weekend and some purposeful parenting and many trips to "time-out" I think we're turning a corner. To sum things up Olivia was spoiled rotten and but we're working on it!

This weekend the weather was really nice here in North Carolina so we were able to take a few walks around our neighborhood. There aren't quite as many parks as there were in our neighborhood in DuPont but we did manage to find one. Last spring I would take the kids to the park several times a week so Peter has been to parks plenty of times but this was the first time he was big enough to really enjoy it. He had a blast! And I think there are many more trips to the park in our future. Of course there is the minor inconvenience of wiping everything down with lysol before Olivia is allowed to touch anything and then making sure there are no other kids there. But that's well worth it for smiles like these!

Christmas Whoops!

We had a peaceful Christmas around here. The kids slept until 8am. We went through our stockings. Olivia helped me make monkey bread for breakfast. We started unwrapping gifts. We wanted to let the kids open each item so it took a while (almost 4 hours but who's counting). Peter took a little nap so Mike and I were able to focus on opening presents with Olivia for a bit. Peter woke up and we continued unwrapping. The kids got a ton of gifts. We had lunch and then skyped with my parents and Amy. Both kids took long afternoon naps and then we had a lovely Christmas dinner. We ate in the dinning room and used the real china (well Mike, Olivia, and I used the real china, Peter used his highchair tray). We got the kids into bed then I went to upload the pictures and somehow I managed to delete 2/3 of the pictures I took today, WHOOPS!

Oh well, we had a good day! Merry Christmas!

It's Beginning to Look a Lot Like....

When the mailbox is full of well wishes from friends and family every day....


and the Nativity is beautifully displayed....

When the stockings are hung by the fireplace with care....


And there are loads of presents under the tree....



It's beginning to look a lot like Christmas but it feels like Thanksgiving. We're just so overcome with thankfulness that we're all together, that Olivia is doing well that we can't seem to see beyond that to celebrate anything else. It's a weird feeling, I know it's Christmas eve but it doesn't quite feel like Christmas and I wouldn't trade it for anything in the world.

Grumpy Clinic Day

We headed up to Durham today for Olivia's weekly clinic visit. The clinic visit itself went well but Olivia was not a happy camper. I think that Olivia is facing some behavioral challenges lately. She has had our undivided attention for months but now that we're living together as a family again Olivia isn't constantly getting all of our attention. Peter is now an active toddler and he's needing more and more of my time. Olivia is not used to having to compete for my attention and she's not happy about it. Physically she's doing very well. Her white blood count is down to 7.6, her red blood count and platelets are steady. Her magnesium and potassium levels are increasing and her weight is steady. Today she got her monthly IVIG infusion. We got to clinic around 10am and went straight into a room in the day hospital. I think that Olivia is a little bit apprehensive about clinic visits these days. I think that she's always worried that we won't be able to go home again. She did seem to cheer up again as we started to get ready to leave. We finished up with our clinic visit around 12:30 but unfortunately we weren't able to leave Durham until 1:30. I had to pick up some prescription refills at the pharmacy but they are closed from 12:30 to 1pm for lunch so I had to find something to do to entertain Olivia and Peter while we waited. There was some discussion about transitioning "soon" to just having to come to clinic every other week instead of every week but I'm not holding my breath. I don't think that will happen before February at the soonest. At this point we're just glad that we're able to live together as a family again!

Virtual Christmas Card

We finally mailed our Christmas cards this past weekend. I wanted to share it here as well since I don't have updated addresses for so many of our friends and family. So here's our card and a copy of our annual Christmas Letter.




Greetings from North Carolina!
What a difference a year makes! This time last year we were adjusting to life as a family of four. We were living in Washington and we were preparing for Mike to deploy to Afghanistan. We had just received the devastating news that Olivia has Sanfilippo Syndrome (a genetically inherited metabolic disorder). Now we’re just getting settled near Ft. Bragg, North Carolina. Mike did not deploy to Afghanistan. Olivia had an umbilical cord blood stem cell transplant almost 6 months ago and Peter has taken his first steps!
I’ll start with Olivia since so many of our experiences in 2009 involve our precious little girl. When Olivia was diagnosed with Sanfilippo syndrome we were told that there were not any treatment options. In January I learned about a clinical trial at Duke University where doctors were using umbilical cord blood stem cell transplants to freeze and potentially reverse some of the damage that is caused by Sanfilippo syndrome. In March we traveled to North Carolina to learn more about the transplant process and see if Olivia would be an ideal candidate for the procedure. Our decision to move forward with the transplant was by far the most difficult decision that Mike and I have ever been faced with. After weeks of prayerful contemplation we made our decision and moved forward with the transplant process. We endured a lengthy battle with our insurance company. We moved to Durham in June and Olivia was admitted to the hospital and began chemotherapy to prepare her body for the transplant. Olivia received her transplant in July and was released from the hospital in September. We had to remain in Durham near the hospital for a couple more months and Olivia was finally cleared to go “home” to Ft. Bragg at the beginning of December. So far Olivia is responding to the transplant very well. Some of the effects of the Sanfilippo syndrome are beginning to be reversed and Olivia has started to produce the enzyme that she was lacking. We know we still have a long road ahead of us but we’re hopeful!
Peter has been happy and easygoing from the start! He is such a blessing and he completes our family in a way that we never expected. Peter initially made the trip to North Carolina with us but when Olivia was admitted to the hospital he went to Texas to live with my parents. I know that Peter enjoyed his time with them as much as they enjoyed having him. In October Peter came back to Durham, our reunion is one of the happiest moments of the year! Peter took his first steps one day while we were at Duke for one of Olivia’s appointments. He’s just starting to talk, his first word was “dada” but he’s also added “hi” and “yeah” to his vocabulary.
Mike was able to be reassigned from Ft. Lewis, WA to Ft. Bragg, NC so that he could be close to Olivia and I at Duke. Mike thinks often of our friends and family members in Afghanistan but we feel so blessed that he was able to be here throughout the transplant process. He was able to take some time off to help us move from Washington and get settled in Durham and then went back to work in July. Mike is in an airborne unit here at Ft. Bragg and he’s enjoying every second of it! He’s been busy practicing his paratrooper skills but fortunately he was able to join us almost every weekend we were in Durham. Mike spent his “bachelor” months at Ft. Bragg busy house hunting. He found a fantastic house for us in a great neighborhood and we’re going to love living here. Mike will take command in January and I think he’s looking forward to the challenge.
This has been such an amazing year, full of so many highs and lows. I took a step back from my volunteer work and I loving the extra time I’ve been able to spend with our family. I’m so much more comfortable and confident in my role as a mom. I am treasuring the small stuff and I’m so blessed to have such supportive friends and family! We’ve been fortunate to be able to spend more time with some of our family members and we appreciate all the help. I am really enjoying the creative outlet that our family blog provides so if you haven’t checked it out lately please do! www.mikelaurieandolivialeiva.blogspot.com
We wish all of you a blessed Christmas and a Happy New Year. Thank you so much for your thoughts and prayers, for all the thoughtful gifts and presents that you sent. We treasure them all more than we will ever be able to express!
Love,
The Leivas

Muscle Mania!

They decreased Olivia's steroids last week and she's showing some dramatic improvement in her leg strength. She's able to get in and out of her bed all by herself. It was such a great suprise to see her walk into the kitchen this morning when I was having my coffee. I thought she was still asleep. She'd gotten out of bed all by herself, opened the door to her room and walked into the kitchen and said "hi mommy". So adorable! Olivia is getting better at walking up and down the stairs by herself and her balance is improving. She still has a long way to go but it's nice to see her getting stronger again.

I've also discovered that Olivia loves Christmas carols, she can even sing along with a few of them. We're such a festive family these days.

Olivia's weekly clinic visit is on Wednesday so we'll see how things go then.

Gingerbread Architecture

We decorated a gingerbread house. I LOVE those premade kits! Olivia was much more precise with her decorating this year. This year more of the decorations actually made it onto the house since she wasn't really interested in snacking on any of the decorations. Her appetite is improving but she is still not very interested in sweet stuff. Peter, on the other hand, loves the sweet stuff. I gave him a gingerbread man to play with and a tiny bit of icing. In a few seconds Peter managed to eat the entire gingerbread man and get the icing everywhere!

And if you want to compare this year's fabulous structure to last year here's the link:

http://mikelaurieandolivialeiva.blogspot.com/2008/12/gingerbread-house.html

Yummy!

We were busy this weekend but I feel like we've accomplished a lot. We're almost all moved into our new house. We spent today hanging pictures on the walls so it is really starting to feel like home!

Mike and Olivia decorating Christmas Cookies. This is the secind year they've done this....I think it's a family tradition.




Last Year.....

A Friendly note to Soldiers returning from Afghanistan

Welcome home dear soldiers but please try and control yourselves. Please try and refrain from "over celebrating" and consuming too much alcohol. Even though you have just returned from Afghanistan you still have to pay your cab fare. Remember it is not appropriate to refuse to pay your $14 cab fare and strip down to your birthday suit and run around in the middle of the street in front of said cab and the military police who are trying to encourage you to pay the cab fare and go home. How could you know that your overzealous celebration disturbed my family's first Friday night at home in over 6 months? How could you know that your night time shenanigans would require my husband to get out of bed at 3am to drive into work to see why 3 upstanding young soldiers recently returned from Afghanistan were arrested due to failure to pay a $14 cab fare and public intoxication, thus missing the first morning both of our children have ever slept past 8:30am.

I would have gladly given each of you $14 if only you had just paid the cab fare! Welcome Home, but please lets try and control ourselves!

Making Merry

Christmas feels so different this year and we're loving it! We just so blessed to be able to be together as a family that we cannot help but celebrate the real "reason for the season" and God's presence and guidance in our lives.

Mike isn't taking leave over Christmas but he's only working half days from now until after the holidays and we all love being able to spend more time with him. Yesterday he got home early and sent me off to do some errands on my own. I headed to the mall, my first trip to a mall this Christmas season and it was completely overwhelming. It was so crowded, lines were long, people were rude, I didn't enjoy it at all. Through no fault of my own (we all know I love to shop) our Christmas this year has been suprisingly uncommercialized and I'm enjoying the new changes! The kids and I made gifts for our friends and family members. They were simple and innexpensive to do and the experience of making them together is one of the things that I will always treasure about Christmas 2009! I'll post a picture of one of our homemade gifts in a few more days, I wan't to make sure I don't ruin the suprise as I haven't made it to the post office yet. A few weeks ago I found a great deal on Christmas cards (they were free) and while I had to spend more time creating and designing the card than I would on other websites and I love it and I can't wait to send them out. We put up our old artificial tree (real trees aren't an option this year because of Olivia) but we only put about half a box of ornaments on it. It looks a little Charlie Brown-esk but Olivia and Peter both love it. We haven't done any lights outside. I've been known to go to multiple stores to find the perfect wrapping paper and coordinating bows to wrap all the presents under the tree, it just looks more festive when it all matches:) This year I just picked up 2 rolls of wrapping paper on sale, no bows or ribbons. We did put out our nativity scene and it warms my heart to know that Olivia seems to have some concept of who Jesus, Mary, and Joseph are but has no idea who Santa is. It's as it should be! We received huge bags of wrapped toys for Olivia and Peter from the Family Support program at Duke (more on this later) and I think that Mike and I are more excited than Olivia and Peter are to see what is inside! It will be so much fun to watch them open up their gifts on Christmas.

We haven't gone completely non-comercial, I did buy the holiday cheese shapes for the kids and the holiday ziploc bags, who can resist such cuteness! And I've almost drank my weight in holiday flavored beverages from Starbucks, who can resist those seasonal creations (Pumpkin Spice and Caramel Brulee are my favs). I think this year we just happened upon an appropriate balance between the commercial and the spiratual side of Christmas and I know we'll strive to find this balance each year.

I've got a fun day of baking and Christmas craft activities planned so I'd better get going, I'll try and post some pictures later.

Clinic Review/Olivia Update

We've had a busy week. Olivia is doing well, she is really enjoying being home. She's still not feeling 100% but her appetite is continuing to improve and we notice that she's getting a little stronger each day. On Monday and Tuesday we met Olivia's new occupational therapist, speech therapist, and physical therapist. They all seem really nice and I think that Olivia will like each of them. Not all of them have a lot of experience in working with kids with Sanfilippo Syndrome but they all seem very open and ready to learn. I'm just glad that we were able to get everything set up realtively quickly so that Olivia can start receiving her home based thereapy and continue on her road to recovery.

Today we also had Olivia's weekly clinic visit. We got up bright and early to head to Duke. The kids were well behaved on the drive and we got to clinic around 10 am. I think Olivia was a little apprehensive about being back at clinic and it took her a while to warm up to people again. Olivia has gained a little bit weight which is great news! Her labs look good. Today she got her monthly pentamadine (anti-pneumonia) breathing treatment. It was difficult trying to keep Peter occupied while Olivia was getting her breathing treatment, fortunately the nurses in the clinic are fantastic and they were happy to take Peter for a walk around clinic. Peter is such a flirt and he loves seeing all the people. While Olivia is shy and reserved Peter is completely the opposite. He's so outgoing and I don't think he's ever met a stranger! Olivia's appointment today was pretty quick and even with the breathing treatment we were finished in under 2 hours. Unless something happens we don't have to go back until next Wednesday. It's so good to be home!

Cereal Mountain

As a parent I have never wished I had a camera handy as much as I did today. I cannot believe I couldn't find a single camera! My cell phone was completely dead and the camera was no where to be found!

The only thing that I don't love about our new house is the lack of a pantry. We don't have a pantry at all. We have a huge laundry room and we bought some shelves to create our own pantry. I used the baby gate to lock myself in the laundry room so that I could organize the pantry while Olivia and Peter played in the hallway. I was so focused on getting my task done I didn't realize that Peter had been very quiet for a while (always a bad sign). I went to look for Peter. I rounded the corner just in time to see him diving head first over the arm of the chair into a mountain of cereal. He rolled around in the crunchy cereal mountain then he helped himself for a couple handfulls of cereal then he climbed back up into the chair to do it again. I was speachless! Have you ever? Apparently Peter had reached over the baby gate not once but 3 different times to grab a box of cereal. He then crawled with them down the hall, through the kitchen, across the living room and over to the armchair where he dumped each box out making a big pile 'o cereal. I can't blame him, the colorful mound of rasin bran, fruit loops, and honey-nut cherios must have been too tempting for him, he had to dive right in. The boy had cerrios all over him and flakes of rasin bran stuck in his hair, he was a mess and he was having the best time of his life! I wish I had a camera!

Mike's long awaited Black Friday recap

A special guest post from Mike. He normally hates shopping but on Black Friday it's a competitive sport and he loves it (you couldn't pay me to go near a store the entire weekend following Thanksgiving). Here is his recap of his adventure.....



The truth is I've had more memorable Thanksgivings with more food or family than this year's but this year was probably the most relaxing and enjoyable Thanksgiving I've ever had.

Let me explain before I mention the activities around midnight (aka Black Friday). First, we were in an apartment without Laurie's usual cooking ingredients and utensils so Thanksgiving dinner required creativity and improv. Second I had my whole family together, wife and kids, always a plus. Third, the food was more then enough for two adults and one baby who eats anything (Peter) and a child that is on a strict potato chip diet (the main thing Olivia eats, better then nothing). The last thing and probably the best was the time we ate, 12:30 pm. That is right, sounds weird having Thanksgiving at that time but it was perfect! I didn't over stuff myself, didn't spoil my meal by munching waiting for the 4-7pm meal, and we were able to put both kids down for a nap and relax. I have now told Laurie that this is a new Leiva tradition for our family, that she will have to have Thanksgiving ready by 1pm, yes I know it is hard work but Laurie always strives for challenges!

Now to explain the mysteries of my Black Friday adventures. I let Laurie go off and enjoy herself with a friend from 5200, Brandy, Shawn's mom. Laurie and Brandy went to go see New Moon, Laurie got back at 10:55pm.

Researching through the net and the newspaper I discovered that Toys-R-Us was opening at midnight. Great news because the store was close to Target and our apartment. Now I know that your supposed to buy children's toys at this store but the truth is there wasn't any great toys or specials, except for an itouch with a $50gift certificate. Because my ipod is 2nd gen and I've had for over 3 1/2 years the battery now only last for 2 hours max, time for replacement.

I prepared to leave at 10:00pm. I made sure that I had my phone fully charged, one thermos full of hot cocoa (I hate coffee), ipod charged, psp charged, fold up chair, two jogging pants, t-shirts, sweaters, jacket, gloves and beanie all on. This is the required equipment list for standing out in the weather for 4 hours! Tried and tested two years in a row.

I got to Toys-R-Us at 11:25pm, the line was not that bad maybe 150 people. About 10 minutes after I got there a lady started coming by giving out tickets to the big items that had on sale, X-Box, some pony thing, and the itouch. I told her I wanted an itouch and she gave me the last ticket. After getting the last ticket I knew this was going to be a special Black Friday. I relaxed by playing my psp for the next 30 min, thinking about anything else I could get. At 11:55pm, it started to get crazy the line we were in started moving very fast to the door because about another 50-60 people just got out of there cars and were now ready to rush the door rather then wait in line! Yes this is the scene that you see on tv the next day, but I assured myself there was no item worth my safety or anybody else's. The people at Toys-R-Us should have prepared better but at 12:00am on Black Friday they opened their doors and that is when the rush happened. I would compare the rush to the Mardi Gras rush in the French Quarter. I heard one man say your crushing me, get off me, truth is he was one of a handful of idiots who had a cart outside and was trying to get in the doors with his cart. Nobody gave him room to move his cart so he started becoming more frustrated, by the time I got through the doors I looked saw that he left his cart behind in the "riptide." Going through the store I saw several things that I though might be nice stocking stuffers for the kids so I picked them up (Little People, markers, bouncy ball). After this I went straight to electronics to claim my prize. I waited in line for over an hour and half, during this time I observed two fights over a $20 mp3 player, one lady had about 10 of them for her children and nephews but she dropped some then two other lady's helped themselves. I am watching this and now starting to get drenched with sweat from my clothes but also because I am surrounded by maybe 200-350 people in the electronic area. Thought this is a good time to move my wallet to my front pocket didn't want to get picked-pocketed. I finally purchased my gifts, Mike, Olivia and Peter 1; Laurie 0.

On my way back I called Laurie and let her know I would be on my way home it is now 1:41am. As I am driving I though it would be nice to hit up target but the line would be too long, I look at the parking lot only a handful of cars, perfect! I pull a quick turn and go park and call Laurie with the latest change, I am sticking it out for another couple of hours. I was number 16 in-line. Originally my initial plan was just to get a two screen dvd monitor portable car system (Gift for Laurie as she will soon start driving three hours from Ft Bragg to Duke for Olivia's appointments, kids can watch movies) Some of the people waiting with me were a little crazier then me. First, 4 people have been waiting since noon, and playing monopoly, yes these were adults. The the next 5 people had a tent set-up and were sleeping, even crazier before the store opens up I find out that they was two high school juniors and their three younger siblings, five kids. Now as a parent I know there are things that I will and will not let my children do, this is one of them, waiting out in the cold by themselves, sleeping in front of a store with strangers all around and then just let them call before the store opens up and ask if there is anything else they need to get! Some parents! While I'm waiting the folding chair is paying divends, relaxing, having my cocoa and playing psp, two hours later psp dead, now switch to my ipod, hour later out of cocoa and ipod dead, but only 30 min left. Walk to the car to put up toys and chair then I realize that Target is jammed packed, maybe 800-1000 waiting in line. Looks like the Space Mountain ride at Disney World before those easy passes, just snakes around, around, around. When I get back to my nice spot I realize I am no longer 16 but now about 28, should have known friends were waiting in the car now coming to reap the benefits from their friends, not worried can still get my gifts. About 10 min prior to opening everything is set up for success, they have a police barricade in front of the store, three Durham police officers, and start to hand out maps of where special items are in the store. As the doors open I make for the portable car entertainment gift, pick-up two (one of the people I met wanted one but wanted to get a Garmin GPS first and I told him I would pick him up one if he would pick me up two gifts for the my parents and Laurie's parents). Right next to the car dvd sytem was the flat screen tv's, oh well we have one but it was such a good deal I got it, a 32" tv. Met my friend and exchanged gifts, said thank you and went to find other gifts, I picked up one for Laurie (she will read this blog so I will keep it a secret), two cool puzzles for Olivia, three cool leapster electronic toys two for Peter one for Olivia, and the 300blue ray dvd for me.

I left the store and got home at 6:21am. The final tally goes Mike 2 (tv for the family), Laurie 2, Olivia 4, Peter 3, Parents 1, along with miscellaneous stocking stuffers.

This was a good Black Friday, I didn't get trampled, beat-up, or robbed.

Home at Last

We're so glad to be home! It seemed like it took forever to pack up the apartment. I can't believe how much stuff we had there. Olivia's medical stuff alone took up an entire suitcase. I saved the suitcases to pack up our more important stuff and we ended up "packing" most of our clothes in trash bags, classy :). I'm just glad we only had a 2 hour drive instead of an airplane ride, I don't think the trash bags would have held up as well. Olivia and Peter were both excited to see us packing everything up. Peter was really talkative during all the running around. Our trip home was uneventful and Olivia was very excited to see her room. As soon as we went through the gates into our subdivision Olivia got the biggest grin on her face. She started saying "house, house" and told me she wanted to go to the slide at the playground. The doctors had given us the ok to take Olivia to a playground as long as there are not any other kids around and we wash her hands well when we're finished. It's a little too cold for that around here today but maybe sometime this week.

Unfortunately our first night at home isn't the reunion we were really hoping for. Mike has to go to a military ball tonight so it's just me and the kids. I've been to so many I'm so excited to not have to go tonight, although Mike did look pretty handsome in his uniform. Mike wore his uniform at our wedding so it always brings back memories. We still have tons of unpacking to do so it was a little hectic trying to get meals together and do the bedtime routine but I'm sure we'll get it sorted out soon enough. It's a little tough though, all I want to do is unpack and organize but it's pretty tough to do that with two little ones running around.

I wish I could have captured some pictures of some of the special moments from today but of course in all the packing/moving excitement I have no idea where it is!

The Sweetest Thing

Olivia and Peter cannot wait to see each other after nap time. If Olivia wakes up first she constantly tells me Peter is sleeping in her loudest voice until Peter hears her and wakes up. If Peter wakes up first he races into her room (the doors to the bedrooms don't really close in the apartment) and climbs up into her bed. This afternoon he beat me there and this is what I found.....

Heading HOME, Day +141

It's official, we are heading home! Olivia's labs look good, she's maintaining her weight, she's only pooping once or sometimes twice a day so we've been given the okay to head home. Home is a relative term for us. We packed up everything we owned in June when we drove here from Washington state and we've been living out of suitcases ever since. Mike has been living in Fayettville for months now while I've only driven around there once or twice. I did get to spend a couple of nights in our new house there but it certainly doesn't feel like home yet. I know I'll love our new house there and it certainly does feel more like home than our apartment here in Durham but it'll take a few more weeks before I feel like it's really home.

Here are a couple of pictures of our last clinic visit before heading home. Today we were in an exam room that happened to have a little chair and Peter thought that was the coolest thing ever. He was so proud of himself and sat there most of the time we were there today. Isn't he adorable?

Her face says it all....she's so ready to go!!!

We'll be busy over the next couple of days, we've got plenty of unpacking to do over the weekend and then Olivia has physical therapy and occupational therapy scheduled for Monday and Tuesday and then we'll be back in Durham on Wednesday for Olivia's weekly appointment.

Day +140-Mom Flakes Out

We didn't have much on the agenda today, actually the only thing on our schedule was to pick up Olivia's oral IVIG from clinic in the morning. Olivia actually woke up before Peter so I got to spend a few minutes with her this morning. We started our morning routine, I made breakfast and started Olivia's morning breathing treatment. Everyone finished breakfast and we loaded up into the car and went to get Oivia's oral IVIG. We continued on with our day...ran some errands, vacuumed out the car, etc. After bath time I put Peter down for the night and I went to get Olivia's night time breathing treatment ready. I usually get her evening meds ready and then we cuddle on the couch when she does her breathing treatment. Olivia and I both really enjoy this special cuddle time. I got Olivia all set up and then went to get her evening meds when I realized that I didn't have any dirty syringes from the morning meds. As I pulled out her medications I thought it felt like it had been a while since I had given her meds. I paused and thought for a second.....I DIDN'T GIVE OLIVIA HER MORNING MEDS. I completely forgot to give her any of them! No blood pressure med, none of the anti-rejection meds, no magnesium, no vitamins, none of the antibiotics, nothing! YIKES!!!!! Luckily it was just 7:30pm so I knew someone would still be in the day hospital. I spoke to one of the nurse practitioners who knows Olivia well, he reassured me that it was not the end of the world. We went through Olivia's med list. Olivia's med list is pretty complicated, we're not just talking amoxicillin twice a day for 10 days. She gets several meds in the AM only and others in the PM only, some every other day, some she gets different amounts of on different days. It's complicated. I have her 3 page med list taped to the cabinets in the kitchen for easy reference with my hand scribbled notes all over it. The nurse practitioner walked me through which meds to give Olivia and what the updated dosages should be. Hopefully I haven't caused any major damage! The nurse practitioner assured me that this happens but I still feel terrible! Olivia did poop more today than she normally does so I'm really hoping that doesn't keep us from getting the okay to leave Durham on Saturday. Unfortunately I'll have to stay up late to give Olivia a second dose of one of her meds at midnight. At least I have the Real Housewives of Orange County to keep me company :)

Sassy, Day +139

Olivia insisted on picking out her clothes today. The washing machine has been broken in our apartment for over a week so we're running very low on clean clothes. She really didn't have any clean clothes that matched anyway so I let her choose her outfit. This is what she came up with..... She's clearly very proud of herself. Her leggings are about 2 sizes too small and the skirt is 2 sizes too big. But it's clean, and she did pick it all by herself. The headband was a gift from the salon where I used to take Olivia to get her haircut in Washington. I really wish I could remember the brand because Olivia got so many compliments on it! I took Olivia there last June for her last haircut I don't remember how but somehow we got onto the subject of chemotherapy and how I was apprehensive about Olivia's hair falling out and they let Olivia pick out a headband on our way out. Ironically I haven't been nearly as hung up on Olivia being bald as I thought it would be. Without hair I notice how Olivia's eyes light up her entire face. I just put a hat on to make sure she doesn't get cold and call it a day. She recently got some hair accessories though and lately she's all about wearing the headbands.

I'm sure you can imagine that Olivia got quite the reaction from the nurses and doctors in clinic today. One of the nurses told Olivia she looked sassy and Olivia was very pleased to learn that new word. She hasn't stopped saying it all day. When someone came into our room and told her she looked sassy she would put her hands on her hips and then say "no, stop" and then look up with this big grin just waiting for them to say it again. It was hilarious. Dr. Paul told Olivia she looked like one of those Caribbean fruit cocktails with rum. Of course we can't leave Peter out so he decided that Peter looks like a single malt scotch. I think he was starting to say I was vodka but thankfully we moved onto another topic.


In addition to comparing by children to alcoholic beverages, Dr. Paul did some good news and we had a good clinic visit. Olivia's white blood count is stabilizing and her labs look good. It's clear that this newest combination of antibiotics is working well and she'll likely be on one of them for 3 weeks. Her steroids are being decreased again and her blood pressure medicine is being decreased. She will continue the oral IVIG until Friday because we're making these other changes but after Friday we'll be able to discontinue that as well. On Friday we'll have to go into clinic for a quick blood pressure check and a check of her white blood count and then if all is well we will be able to leave Durham. Mike will be able to come up to Durham on Friday night and help pack up the apartment and then we'll head to Fayettville on Saturday morning. While we're really excited to leave Durham we'll not saying goodbye to Duke just yet. Olivia will continue to have weekly appointments for a while but I'd much rather live together as a family and commute to Duke once a week than live here by myself with the kids. So keep your fingers crossed and pray that we'll be able to leave on Saturday.

I don't want to leave Peter out and according to Olivia he looked sassy today as well. I love babylegs (if you're not familiar check them out here: http://www.babylegs.com/. Olivia didn't wear them often when she was younger but Peter wears them often. Peter often takes his own pants off but he hasn't figured out how to take the babylegs off. I've also discovered that they are fantastic for potty training! Olivia can get to the potty in time when she doesn't have to worry about pants and I feel better knowing she's not running around naked from the waist down. Olivia decided to help Peter jazz up his outfit today by pulling the babylegs down around his ankles and Peter ended up looking pretty sassy himself.






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Reflecting

I've spent a lot of time reflecting today. I'm apprehensive about tomorrow's clinic visit. I'm hoping that they say we can go back to Fayettville but I don't think that's likely. I think that Olivia is starting to get a little depressed. She's not really interested in anything anymore. She keeps talking about toys that are at our house that we don't have in the apartment here. I keep finding her looking out the big sliding glass door that goes out on to the patio. She's asks to go "bye bye" and gets excited to go in the car but she's always sad to come back to the apartment. She keeps asking to talk to other people, she's asking for "daddy", "amy", her cousins "braden" and "hunter" and some of her friends, "wesley" "aiden" and "rachel". It's nice to hear her use people's names but it makes me so sad that I can't deliver them. We've tried calling people but it's just not the same. She's happy to hear their voices but doesn't understand how to talk to them on the phone. I've tried to be so creative over the last couple of days, trying to think of things that we can do that we can do that she'd enjoy. The school teacher came by today for school and Olivia really wasn't interested in participating in any of the activities. She seems to be the happiest when we're at clinic. At least when we're there she gets to see other people. It was actually the teacher's suggestion that Olivia might be a little depressed and I think she's right. Hopefully our days here in Durham are numbered and we'll be able to get back to Fayettville, and being a family, again soon!

In other news Olivia's appetite is continuing to improve. She enjoyed her pizza today. She's also continuing to do well with the potty training. I'd say she's about 80% potty trained. She is doing great at pooping in the potty but she averages about one pee pee accident a day. I really don't have any expectations about her potty training. I'm sure we'll get there eventually but I know it'll take some extra time. When she's successful I know she's proud of herself and for now that's all that matters.

Here are a few pictures from our day.....

PIZZA



Outside, please

Watch your language!

Apparently I have a problem, I need to watch my language, especially around little ears. I don't curse often but I do let the "s-word" escape occasionally. When Olivia was little I remember being very careful about it but then with her speech delay I kind of forgot about being so careful. Not only has Olivia picked up that choice 4 letter word she has also learned to use it appropriately. This morning Olivia woke up and we made our way to the bathroom so she could go potty. As I helped her get situated on the potty I pulled down her night time pull-up and noticed that she had a little accident and had pooped a little in her pull-up. I was in "mommy mode" so I just said something along the lines of "whoopsies, acident." Olivia on the other hand calmly looks down at her pull-up and said "S**T". I know it's not funny but it was everything I could do not to laugh. We should all have our mouths washed out with soap. I think I'm sensing a New Year's Resolution here....

Continued Improvement, Day +137

We had a good visit in clinic today. It was a pretty short visit, we were in and out in about 2 hours. Olivia's port worked beautifully. The nurse practitioner went over the results of Olivia's CT scan from Friday. Since they did a complete CT in June (pre-transplant) they were able to compare the two. Basically it shows that her sinuses are completely blocked which is what we were expecting. Prior to transplant we knew that Olivia has some skeletal issues that prevent her sinuses from draining well. These skeletal issues are the result of her MPS and Dr. Paul believes that over time they will improve. It will take years though before we begin to see any skeletal changes. In the mean time we'll have to manage her sinus issues with a combination of antibiotics and, when it becomes necessary, sinus surgery. Overall Olivia is feeling much better, she's back to talking and playing more. I don't know if the oral IVIG is making a big difference. She's still having one bowel movement a day and while it's not diarrhea it's not regular poop either. We do have the right combination of antibiotics on board now, her white blood count is continuing to decrease although these antibiotics might also be causing some of her bowel issues.

Someone asked about Olivia's counts so her they are:

Hemoglobin: 11.2 (normal range is 10.5-13.5)
White Blood Count: 9.2 (normal range is 3.8-14.0)
Platelets: 272 (normal range is 150-4)

Wednesday will be our long day in clinic. We're looking forward to seeing Dr. Paul and finding out when we can leave Durham. Her speech, occupational and physical therapy were all scheduled to start in Fayettville this week so I had to push those back a week. I'm really hoping that I don't have to cancel next week as well but I guess we'll see.

My little Daredevil

Peter is a daredevil with a capital "D". I don't know if it's just his personality, or if it's because he's a boy, or because he's my second child. Who knows! The point is this boy can get into a mess faster than I can say "GO". He does seem to have a lot more control over his muscles than Olivia did at his age. Again I don't know if that's the difference between girls and boys or if it's because Olivia has Sanfilippo syndrome. Here are just a few of the predicaments I found him in over the weekend. The kids were eating breakfast. Olivia was at the breakfast bar and Peter was near her in his highchair. I turned around to start a pot of coffee and by the time I turned around again this is what I found..... I was right there and I didn't hear a thing. He must have stood up in his highchair and crawled on the tray but I can't figure out how he got from the tray to the bar. Peter also managed to unlock and open the dishwasher all by himself. But how could you be mad at this face? He's guilty and he knows it but he also knows that if he gives mom this smile she can't be mad. You can also see his 6 teeth, 4 on top and 2 on bottom. Such a big boy!

Finally Sunday, Day +136

I'm so relieved that today was finally Sunday, hopefully we're one day closer to going home. Peter slept in until 7am today. I know he would sleep longer but he starts to wake up which wakes me up and then he sees me moving and starts screaming. Among other things I'm really looking forward to everyone having their own room again when we go home. I got everyone bundled up and we headed to the hospital to pick up Olivia's medicine. It was so boring here today. It looked beautiful outside today, the sun was shinning but it was cold. It would have been really nice to go out for a walk but I didn't want to expose Olivia to the cold so we were stuck inside. We built an enormous fort and had fun playing inside of it. Then I pulled all the cushions off the couch and let the kids jump off the couch onto the floor. It was good exercise for Olivia and Peter enjoyed scrambling around. Peter and I did have a little moment earlier. He had an absolute meltdown when I wouldn't let him take the flashlight away from Olivia. My darling little boy has a bit of a temper and he's accustomed to getting his own way. Olivia had the flashlight and he took it from her. I gave it back to her and told Peter it wasn't his turn yet. He took one long look at me then he started huffing and puffing like a woman in labor. It was all I could do not to bust out laughing. When he realized he was not going to get his way he let out the loudest wail! I think this was the first time I haven't let Peter have his own way.

Mike finished another jump today, it was a foreign jump with the Canadian Armed Forces. I wish I could have been there to see him. We had been planning to go see him, the doctors had even given us the okay for Olivia to go since we'd be outside and there wouldn't be too many people around but with Olivia's complications this last week it wasn't an option. I'm glad he had fun and glad that it's over.

Basically we spent all day destroying the apartment, it's not dirty but it is a disaster. I have a lot of straightening to do before I can get to bed. I'm ready for the new week to begin. I can tell that Olivia is feeling better but I think she's just ready to be done with all of this as well. She keeps asking to go "bye bye".

I wish I'd taken a picture of our awesome fort from the outside but I did get a couple pictures of us playing inside the fort. Olivia was totally saying "cheese" and smiling but since it was dark inside the fort I had to have the flash on the camera on and she closed her eyes every time I tried to take a picture.
Peter's meltdown because it wasn't his turn.
He's all smiles when he gets his way!

Keeping Busy

Last night I spent some time trying to find activities we could do over the weekend since we won't be able to see Mike. He was scheduled to jump today but it was postponed because of the weather. I'm glad that he didn't have to jump out of a plane in the rain, I'm sure it's scary enough when the weather is beautiful. He still couldn't come in to Durham because the jump was rescheduled for tomorrow. I was looking for some fun, creative things to do this weekend and I decided we could make some Christmas gifts. We had a baking day today. Olivia had fun helping me and Peter had fun making a mess. As I was cleaning up from our baking activities I thought about how successful our day had been. I started to look forward to my Sunday evening shows and packing the diaper bag for our trip to clinic the following day, and then I realized that it wasn't Sunday and I was so depressed! We still have a whole day to get through tomorrow before we can start the next week. I'll have to think of something we can do tomorrow to keep us all occupied.

Tears, Tantrums, and Triumph

Today we had to be at the clinic at 7:45 am so that they could access Olivia's port and draw her labs before heading back downstairs for Olivia's CT scan. The first set of tears began early in the day. I was in such a hurry to get up and out of the apartment that I forgot to put the numbing medication on Olivia's port site. This "magic cream" temporarily numbs the area so it doesn't hurt when the insert the needle to access Olivia's port. The medication takes about 30 minutes to take effect so I usually put it on as I'm getting Olivia dressed but today I forgot. We didn't have time to put more on since we had to check in for her CT scan by 8am. They did use some "cold spray" to try and numb the area but I could tell it didn't work as well as the numbing cream and of course it was very cold on her skin which led to the first tears of the day. This was immediately followed by our first triumph of the day, Olivia's port worked! The nurse quickly drew the blood for her labs and we headed down to get Olivia's CT scan. Olivia is on contact isolation because of her new norovirus so she cannot wait in a common waiting area with other people so we waited in the isolated waiting area (which in reality was a hallway with a folding chair). Fortunately a room was available in the recovery area so we were able to head over there and get comfortable. Olivia's CT today was scheduled in a sedation slot in case she did need to be sedated. I was fully expecting her to have to be sedated because she was having a CT scan of her head, sinuses, chest, abdomen, and pelvis. Shortly after settling in to our room in the recovery area both Olivia and Peter decided to have full blown tantrums which led to more tears on my part. Olivia couldn't have anything to eat or drink prior to the procedure in case they did need to sedate her. I woke both kids up early this morning so that we could get to our appointment on time so Peter hadn't had any breakfast and he was hungry so he had a meltdown. I had breakfast for him but Olivia couldn't eat so she had a meltdown. Both kids were crying and it felt like we had been waiting forever! Olivia had been begging for water for hours but then she refused to drink her contrast juice for the CT scan so I had to force it down her throat. It was after 10 am and our "scheduled" CT scan was at 8:15 am. Then everything in the recovery area seemed to come to a complete stop because they are going to have some sort of construction project in the next couple of months to reconfigure their space and they needed to all stop and talk to the architect about their space and storage needs. Olivia and Peter were crying, I was frustrated, and tired, and lonely, and tired of doing all of this on my own so then I started crying a bit. After my tantrum I pulled myself together and got everyone calmed down. We met with the "hospitalist" (I'd never heard of that term before, I googled it, apparently it's a general physician who works only with hospitalized patients, whatever, I guess this guy was very proud of the fact that he's a hospitalist). He went over Olivia's surgical and sedation history and we discussed what our sedation options were and developed a plan. They were going to use a ketamine (if you're thinking it sounds familiar that's because it is also known as "special K"----YUCK! I can't believe I'm about to willingly allow people to give that to my child) that could be administered through Olivia's port and they would use very small increments of the medication so that they wouldn't over-sedate her and the hospitalist agreed to wait and see if Olivia really needed sedation before administering anything. At 10:30 am they were finally ready for us to head to the CT room and this felt like a triumph in and of itself. We'd been waiting forever but the positive side of waiting for so long was that I got to spend lots of time prepping Olivia for the CT scan. We kept talking about how she would have to lay really still so they could take her picture and it would be loud. When we finally were able to go to the CT room Olivia was ecstatic! She was so excited to have her picture taken, she kept saying cheese and raising her arms up above her head. I strapped Peter into the Baby Bjorn and we followed Olivia and the nurse off to the CT scan. Peter and I were allowed to go in and help get Olivia settled but then I had to go outside with Peter. I could hear Olivia laughing and talking about toys and animals and saying cheese, picture time. The nurse was awesome, they sang songs, told stories, and Olivia didn't have to be sedated at all! Triumph!

We headed up to the clinic again and got into a room very quickly. Peter and Olivia were finally able to have their snacks and I was able to get one of the nurses to keep an eye on the kids so that I could run to the bathroom. I gave Olivia all of her oral meds (she couldn't have them earlier because she has to have them with food or they make her nauseous and she couldn't have food prior to her CT scan). The nurse practitioner came in and handed me Olivia's labs for the day, her white blood count is down to 11! Another Triumph! I'm so relieved that her WBC is down, I just hope it stays that way. We picked up Olivia's oral IVIG and they deaccessed her port and we got back to the apartment by 1pm.

After we got home I was able to give Olivia her morning breathing treatment and get lunch together. Olivia's school teacher came to the apartment at 2:30 for school and I put Peter down for a much needed nap.

I'm exhausted, it is physically and emotionally draining to take care of both Peter and Olivia by myself. I hate that Peter has to spend so much time strapped into the stroller while I cart Olivia around from appointment to appointment. I spend my entire day dividing my time between the two of them and at the end of the day I feel like I've neglected both of them. Mike is not able to come to Durham this weekend and I don't know how we're going to get through the weekend. We are definitely going to bed early, hopefully we'll all feel better tomorrow. I feel like my life has been on hold since June and I'm ready to get back to "normal." I'm ready to sleep in my own bed and have my own clothes, cook with my own pots and pans, the list could go on and on. I miss my friends, I miss seeing other people, I miss being allowed to go to public places. All in all I'm just having a depressing day so I guess it's my turn to have a temper tantrum.

The absolute highlight of my day was this evening after dinner and before bathtime when we were all playing with puzzles on the floor. Olivia was actually doing her puzzle for the first time in a few weeks, she is finally starting to feel better. Peter crawled over to Olivia and gave her a big hug and then she gave Peter a big hug and told him Thank you. It was such a cute moment, of course it led to tears of joy on my part. UGH! You can tell I'm just exhausted because I'm so emotional about everything.

Shout out to my sister

My sister, Karen, makes the most amazing birthday cakes. My two nephews are some lucky boys, there's nothing more special than having a a custom cake made just for you. It was my sister's idea to decorate Peter's birthday cake with goldfish. Recently she made this fantastic creation for my nephew Braden's 4th birthday.

My nephew Hunter's 3rd birthday was earlier this week and she made this masterpiece!


How cute is that! I love that she filled the truck bed with strawberries! I'm so impressed with her creativity!

A really long Day +132

We left the apartment today at 8:45 am to head into clinic and we didn't get home until 3:45 pm. After our long day in clinic we got a few answers and we have a few more questions. Today seemed like a very surreal day. There were several moments today when I looked around the cramped 6 x 6 exam room and thought "how did this become my life." The kids were both so well behaved today. I'm sure that Olivia is beyond tired of going to the clinic and Peter is the most well behaved one year old in the world. As we were reaching the 6 hour mark of being in our small exam room there were several nurses in the room and we were discussing one of Olivia's medications. Peter was crawling all over me, literally he was crawling all over me. He was so desperate to be able to crawl around but there's no way I'm going to let him crawl on the dirty hospital floor. I finally just pulled a chair over to the sink and rolled up his sleeves and let him play in the water so that I could concentrate on what we were talking about. Everyone at the clinic today was so fantastic. The nurses helped entertain the kids and even offered to watch them when I ran to the restroom by myself (such a treat)!

So now for the medical stuff.

Olivia's poop, snot, and blood have all been tested so many times for so many different things! Out of all the tests we FINALLY have a positive result, Olivia has norovirus. It's a stomach virus that causes nausea and vomiting, loss of appetite, and dihereah. Norovirus may sound familiar, it's been in the news a bit, in March 2009 there was a norovirus outbreak on a Holland America cruise ship. Typically it lasts between 12 and 24 hours but it can last for several weeks in someone with a compromised immune system. They think that Olivia may have had norovirus a couple of weeks ago when she stopped eating and it's great that at this point Olivia is starting to feel better. There was some debate over wheather or not to treat it because she's obviously feeling good. Typical treatment is oral immune globulin for several weeks. Olivia already gets IV immune globulin (IVIG) once a month so we're familiar with immune globulin. They did decide to give Olivia one week's worth of oral immune globulin. Olivia seems to like the way it tastes but unfortunately we cannot get the immune globulin from the pharmacy, we will have to go pick it up every day from the hospital.

While it is nice to know about the norovirus it is not the source of Olivia's high white blood count. Today Olivia's white blood count was up again, it was 31. Post-transplant a high white blood count is indicitive of a bacterial infection but again all of the cutures are coming back negative. We had a short but intense discussion today with Dr. Paul (Olivia's primary physician here at Duke). It is his theory that Olivia has some sort of bacterial infection in her intestines or her sinuses but that the antibiotics are keeping it under control but it is still irritating enough to her system that her immune system is doing it's job and fighting the infection. We have a CT scan scheduled for Friday morning so hopefully that will provide some more information. In the mean time they changed Olivia's antibiotics again to make sure that she is continuing to receive a broad spectrum of antibiotic coverage.

As a side note I finally remembered to ask about the results of the chimerism test to determine the percentage of donor cells. I'm happy to report that Olivia is now 100% donor cells and her body is producing the enzyme that she was previously unable to produce. We're still waiting to see how much of the enzyme her body is producing and there are more tests to determine this at the 6 month and 9 month marks.

Part of the reason we had an extended visit at the clinic today is because we were unable to get blood return from Olivia's port. They administered a dose of TPA but were still unable to get any blood so they sent us to radiology for a "dye study". I know there's a long medical name for this test, something to do with fluoroscopy but basically they put some contrast dye into Olivia's port and then used x-rays to look at how the dye was entering Olivia's bloodstream. They wanted to make sure that there is not a clot forming or scar tissue. Fortunately we were told that it's just a fibrus sheath so we'll just have to wait for it to disolve and continue to adminster TPA and heparin to help break down the sheath. They did administer another dose of TPA and decided to leave it in for 4 hours to help break down the sheath. We were able to leave the clinic around 3:30pm but had to come back at 7pm so that they could check to see if the port was working again yet. It was poring rain and our nurse practicioner was nice enough to meet me at the car and help me get both the kids up to the day hospital so that he could check for the blood and then helped me get the kids back into the car. Unfortunately Olivia's port still didn't want to give us any blood.

The really unfortunate news is that Olivia will have to be stable for at least 2 weeks before we're able to leave Durham so that means that we're not going to be going "home" to Fayettville for at least another couple of weeks. I'm trying to be positive and think of things that we can do in the Durham area. I think that I might buy some Christmas decorations for the apartment, I'm hoping that will help cheer us up a bit.

Oh and on top of all of the fun we had at the clinic all day once we got home Olivia managed to find my phone in our enormous diaper bag and she forwarded a text message that I had sent to my mom to EVERYONE in my phone. So if you got some cryptic text message saying something about how I called you but you didn't answer and we were home from the clinic please disreguard it. Whoops! It was really nice to hear from so many friends and family members though! Sorry everyone!

Day +131, Clinic or Social Hour

Today the plan was to go to clinic and have Olivia's labs drawn, then get her CT scan (from her head to her pelvis), and then head back up to clinic to see what her white blood count was.

Instead we went to clinic, ran into several friends who were in the hospital when Olivia was in the hospital. Saw several of our favorite nurses both from clinic and from 5200 as well as some of the members of the family support staff. Everyone is pretty much in the same boat in terms of not being allowed out of their houses/apartments to socialize so it's nice to talk with other adults, even though we're in an isolated hospital waiting room for PBMT patients instead of a coffee shop.

They did draw Olivia's labs but we didn't go down to have the CT because we are still waiting on the pre-authorization from our insurance company. The CT will be rescheduled for later in the week. They did want us to wait to see what Olivia's white blood count was so we went back to the isolated waiting room to socialize some more.

The nurse practitioner came in to let us know that Olivia's white blood count is down. It's only 26.7 today which is still well outside the normal limits but much better than yesterday's 40.7. Wednesday is our long clinic appointment day so we'll see what tomorrow brings.