Gobble Gobble

I wanted to post some pictures from our Thanksgiving feast but I didn't get a chance over the weekend so here they are. We had a good Thanksgiving but the best part was being to spend 4 whole days together as a family of 4. I hope that we will get to move to Ft. Bragg soon so that we can live together as a family soon!

Oh Olivia! Day +129

We have no idea what is going on with Olivia. She's continuing to eat and drink and her weight is steady. Her poop is normal (back to the way it was pre-transplant). She is whining a lot and the steroid increase over the last week and a half has left her grumpy and full of mood swings. She's not talking very much, she's just grunting and moaning a lot. I know that we're babying her, we're not making her use her words, but it's so hard to know when to push her to do more and when to just cuddle and support her. We went into clinic for a quick appointment on Friday. They were going to check Olivia's white blood count because it was a little high on Wednesday. They started her on a new antibiotic on Wednesday and wanted to make sure her white blood count was trending down. We all went into the clinic for our quick appointment on Friday. We got home and ate lunch and put everybody down for their naps and then the phone rang. Olivia's white blood count was even higher so they wanted her to come back in to clinic so that they could give her a dose of IV antibiotics. Mike took Olivia in for her IV antibiotics and I hung out with Peter at the apartment. They wanted to give Olivia a three day course of IV antibiotics to help bring her white blood count down. They ran another series of blood cultures to check for infection but they have all come back negative. Another stool sample was obtained and tested, so far all tests are negative. Her white blood count was down on Saturday but today it was up again. At this point we're confused. Olivia isn't acting 100% like her self but she's also not acting like she's not feeling well. She's acting grumpy which we expected because of the steroids. Over the weekend they did leave Olivia's port accessed since we knew that she would be getting IV antibiotics each day. Her port is completely under the skin so when it's accessed they insert a needle that is attached to a "tubbie" that looks just like the "tubbie" from her central line. They put a bandage over the entire thing and then tape up the "tubbie" so that Peter doesn't see it want to grab it. To "de-access" the port you just pull out the needle and throw the whole thing away. Only professionals access or de-access Olivia's port. Mike and I were worried about Olivia sleeping alone with her port accessed so we took turns sleeping with her. Sometime between midnight and 2 am on Friday night Olivia decided to de-access herself. I freaked out, called the PMBT fellow on call and they talked me through how to see if the needle was still intact. The needle was fine, it came out cleanly so I put it in a ziploc bag to bring to clinic and checked to make sure Olivia wasn't bleeding anywhere. On Saturday and Sunday Mike insisted on bringing both kids to the clinic by himself. He said he wanted to know what it was like for me during the week. I was able to run some errands during the off-time and fortunately the clinic visits were quick on both days. On Saturday we got great news, Olivia's white blood count was way down to 15. Unfortunately we learned today that it was back up to 22. At this point we're not sure at all what is going on. We'll have to wait until Monday to see what the attending doctor has to say. We're nervous, it is frustrating and stressful not to know what is going on. At the same time Olivia seems to be feeling okay so we're not super concerned. We're just frustrated, we feel like we're stuck here in Durham and not quite sure why. Mike is sad that he's in a big empty house by himself and I'm tired of dealing with both kids all by myself. We're ready for the next phase of our journey but we're stuck here until we know it's safe for Olivia to leave Durham.

This weekend Mike went shopping on Black Friday and he'll be posting a recap of his shopping experience. We also went to Duke Gardens today and took some pictures for our Christmas card. The weather was beautiful and I'll share some of the photos later.

First Steps

This past week at clinic Peter took his first steps. He has been crusing around like a champ for months now and he loves to walk around when he's holding someone's hand or pushing something but this was the first time that he took a few steps all by himself. I cannot believe that Peter's first steps were in the Day Hospital at the Children's Health Center at Duke University.

Here he is thinking about taking a few steps. You may notice that Peter doesn't have any pants on. A few minutes before taking his first steps he had poured an entire bottle of water all over himself and Olivia and I.

And here's the video. I did let go of his hand but it's hard to see in the video. I also had the camera turned sideways and I can't figure out how to rotate the video.

When I thought about how Peter would take his first steps I never could have imagined that it would have been in a hospital room at Duke University!



Olivia wasn't particularly thrilled to see Peter walking. She did say "Good Job Peter" but that was the extent of her enthusiasm.

There were plenty of nurses around cheering Peter on and they were thrilled to capture this picture of Peter and I just seconds after he'd taken his first steps!

Way to go Peter! You're getting to be such a big boy!

Thanks Giving

We have so much to be thankful for, I can't even begin to express....This year Thanks Giving seems so different, definately special in a different way. Each Thanks Giving that Mike and I get to spend together is always special. With his deployments we don't ever take getting to be together for a holiday for granted but this year feels different. I think we always took our health for granted but after living in a hospital for several months that is not something that we'll take for granted anymore.

We did celebrate Thanks Giving here in the apartment in Durham. I made a turkey roast instead of a whole turkey. It was so much easier and just as tasty. We ate early and then all took naps after our big meal. Later in the evening I went to see a movie with a friend and then I returned just in time to watch Mike prepare for his shopping expedition. Mike is normally not a fan of shopping, he hates it! However on the one day of the year when it becomes a competitive sport he decides that he MUST shop. I've never been shopping on Black Friday but Mike seems to be pretty successful at it. I don't think he cares at all about what he's buying, he is just excited to get the best deal. His shopping expedition began earlier in the afternoon when he took Peter out to gather info (i.e. get a newspaper to look at the ads). He didn't have change so he had drive around until he found a store that was open so he could get change. The poor newspaper dispenser apparently ate his quarters so he kicked it until he was able to get a newspaper. I can't believe that he's resorted to vandalism in the name of shopping! He prepared for his expedition by putting on several layers of clothing, none of which match at all! He's wearing some strange combination of army gear and civilian clothes. Think army green standard issue long johns and thermal clothes with tshirts and pajama pants. He left the house with a camp stool and a thermos (no idea what he's got in the thermos but at least I know we don't have any hard liquor in the house so I'm guessing it's the leftover wine from dinner). He was headed to Toys 'r Us and then there was mention of Target and Best Buy and perhaps Sears. I have no idea what he plans on buying as I honestly cannot think of anything that we NEED. I really hope that he doesn't come home with a new TV as we just got one last year and it's in perfect condition. I wish I had thought to get a picture of him before he headed out on his shopping mission! He's clearly all geared up for this so I'm all about supporting him in his quest for black friday bargains. Olivia does have a doctor's appointment on Friday morning at 10 am so I hope he's home in time for that.