Growing so fast

This little boy is growing so fast. I still haven't gotten his haircut, I know he could use a trim but I'm just not ready yet. I also still haven't scheduled his 18 month well-baby visit, he'll be 18 months old on May 11th. I don't want to go to the appointment, that will make it more real.

He doesn't even look like a baby anymore when he's sleeping, he looks like a big kid.
I took these pictures when I went in to wake him from his nap. When he heard the camera he peeked out of one eye, saw me and then covered his head with the blanket. I can almost hear him saying "leave me alone ma".

Wonderful Wednesday, Day +279

Today marks the 9 month anniversary of Olivia's transplant. The 9 month post-transplant studies were scheduled for today so I arranged to have a babysitter watch Peter while Olivia and I drove to Duke. They drew tons of blood for Olivia's labs today, they're checking for all sorts of things from her immune function to her chimerism (which tells us if she's donor cells or original cells). We should get the results at our next appointment. Our first stop of the day was pulmonary function testing. Olivia did fantastic, she didn't blow into the mask as we were hoping but she did scream into it so that's close enough. Her results were 20% better than they were at the 6 month mark. Our second stop was radiology for an echo cardiogram. Olivia's heart function looks good, we'll review the full report at our next appointment. We headed back up to clinic where Dr. Paul and Andre were both impressed with how well Olivia is doing. I was so excited to share with them that Olivia's poop is normal. She's never hasn't had normal poop in years, from about 18 months on Olivia always had really soft stools (as is common for kids with Samilippo syndrome) so normal poop is really exciting to us! Olivia's regular labs look great. Her skin looks good. She does have mild eczema but that's unrelated to the transplant. Olivia's liver has shrunk and it's now well within normal range. The last stop on our schedule was an EEG. I was a little concerned about what sort of information they were looking to get from the EEG. Olivia had an EEG as part of the 6 month studies just a few months ago. They said they were looking for any type of seizure activity (which is common in kids with Sanfilippo syndrome). Olivia has not ever had a seizure and the likelihood that she would start to develop seizures at this point post-transplant is slim. They decided to hold off on the EEG for a few more months and do one as part of the 12 month studies. I was thrilled! The plan at this point is for us to return to Duke on May 12th, if things are well at that point then we won't have to return to Duke until JUNE 12th!!!!

After Andre told Olivia he wouldn't see her as often she got sad and said she wanted to come back. I caught her mid-sentence.


To celebrate Olivia and I went to Chipolte for a late lunch. The restaurant is very near the hospital and it's normally packed for lunch by by 2pm it's completely empty. Olivia and I enjoyed the beautiful weather and sat outside (in the shade of course). My burrito bowl was delicious and Olivia enjoyed her chips and guacamole. It was really nice to be able to spend some time with her one-on-one.

J-U-M-P

The other day we went to Mike's Battalion Family BBQ. It was nice to get to know some of the people that Mike works with. It was a beautiful day and the food was great. They had 2 bouncy houses for different size kids and they were surprisingly not crowded. Actually the entire event didn't seem very crowded. There were lots of people there but it was outside and it was in the middle of the day on a Friday (school day and work day for all non-military people so I think I low of people were unable to come). We let Peter and Olivia jump for a bit. Peter loved it and I think that Olivia enjoyed it. We had to wait until all the other kids were out before I'd let Olivia go in so I don't think she really understood what to do. I think she just thought it was a giant bed and she laid down, it was nap time thought so maybe she was just tired.

Earth Day Hodgepodge

Happy Earth Day! I have to start off by saying that I feel a little guilty on earth day this year. Several times throughout the transplant process I've thought about how un-eco friendly the whole process is. We have to keep our house really clean for Olivia and in addition the the gallons of bad-for-the-environment chemicals that I use each month we also have to use papertowls in the kitchen and in the bathrooms to dry hands (regular towels can harbor bacteria and mold, Olivia gets a fresh one every single day), we also threw away bags of trash every day when we were in the apartment--syringes, medical supplies, everything was wrapped individually in plastic, plastic gloves, etc. We can't use sponges (hello bacteria) so we go through lysol wipes like it's toilet paper. We threw away tons of food, Olivia would have half a bite and decide she didn't want it. Just one more thing to feel guilty about I guess.

Today began with physical therapy for Olivia. I wish I could get some better pictures but I'm generally very involved during Olivia's PT sessions. Olivia can now go up the stairs all by herself and if she's holding onto the rail with one hand and someone elses hand with the other she can go up alternating feet. Olivia can also go down the stairs all by herself now. Here Olivia is with her physical therapist, Miss Becky. I love Miss Becky because she's so willing to learn more about how to help Olivia, I really feel that she is a partner on this journey. Olivia loves Miss Becky because she has a fantastic voice and Olivia really loves songs lately. Peter loves Miss Becky because she doesn't completely ignore him and she always makes it a point to say hi to Peter.



After PT we headed out to plant our plants from Wednesday. I brought the camera and had planned on taking pictures. Olivia can't play with the dirt but she was happily swinging away on the swing. I thought Peter would love it, and he did but he also got a little messy. The boy was eating dirt, throwing dirt, picking up hand fulls of dirt and putting them down his onesie, trying to bury his foot in dirt. Peter then decided to pick almost all the petals off the flowers, he made them into a little pile and then brought the riped little shreds of flower over to me. I'll just pretend that he was bringing me his first bouquet. The whole thing was adorable and fun but very messy so I don't have any "during" pictures to share but here's some of the after.....

Dumpster Diving

We live in a really nice neighborhood, in addition to all the wonderful amenities that exist here Mike has found another rewarding aspect of our neighborhood....Dumpster Diving. It turns out that people here in our nice neighborhood throw away nice trash. I'm glad that he only engages in this new hobby around 4am when he's on his way into work. To be fair he's only done it twice but I think he might be hooked. Normally I would not encourage this behavior but how can I be mad when he brings home treasures like this?

Wednesday Update

Unfortunately mother nature had other plans for our Wednesday celebration. It rained almost all day on Wednesday so we weren't able to go outside at all. Maybe we'll get to it Thursday....

Temper

This little love of my life has a temper. When he gets angry it isn't pretty. He pouts, he hits, he bites, he stomps his feet, he bangs his hands and sometimes even his head against the floor. I have no idea where he learned to do this stuff, I certainly don't do any of this and Olivia doesn't behave this way. I don't know if it's a boy thing or a Peter thing. Olivia never had anything close to this sort of tantrum. We're still working out the best way to deal with these tantrums. It's hard because they happen so quickly and then they are over just as fast. One second he's devastated to hear the word "no" and then the next second he's moved on and forgotten the entire thing. This entire episode lasted less than a minute, he has 2 complete meltdowns and then recovered. I think that Peter might have a tendency to over-react a bit, I have NO IDEA where he might of gotten this ....

Look at that face, his world is clearly over!



Oh but wait, going down the slide makes everything better. That was fun.



Now I'm really mad!



Swinging makes everything better! All is right with the world again.

Celebrating Wednesday

Each Wednesday that we don't have to drive to Duke for a clinic visit is cause for CELEBRATION! We don't have clinic until next week so we have big plans to celebrate this Wednesday by working in the yard. I've driven by this sign at the high school down the street for the last couple of weeks so I finally decided to stop and check it out.

I think I found some great deals, azaleas for $3, petunias and pansies for $1.50, tomatoes and peppers for $1, roses for $4. I'm looking forward to seeing what we can get accomplished with all of this on Wednesday.

Fruits of Our Labor

In January we started using the envelope system to help us adhere to a monthly budget. In addition to our regular envelopes we created a “Swing Set” envelope. We didn’t put any money into the “Swing Set” envelope to start with, but each time I had extra money left over in a different envelope I transferred it to our “Swing Set” envelope. I’m so proud to post these pictures representing the Fruits of Our Labor……




Initially we had planned on getting a much larger wooden swing set from Creative Playthings. But after we measured our back yard we began to re-think that idea. We have a narrow back yard and we didn't want the swing set to take over the yard. We also thought about what we would really need. I've been looking at swing sets on craigslist for a while and I noticed that the Step2 and Little Tykes sets seem to have a good resale value. I was worried that a wooden set might have more sharp edges and corners that might be dangerous for Olivia. This swing set from Step2 went on sale at Toys 'r Us a few weeks ago and we had just enough money in our envelope to cover it. Mike put it together a couple of weekends ago and Olivia and Peter have enjoyed playing on it almost every day since.

The day in which Mommy over-reacts and rushes off to the doctor again....

On Sunday afternoon Olivia either tripped or Peter stood on her foot. They were playing in the living room and then I heard the screaming. It was the I'm in serious pain scream, not the I'm uncomfortable or irritated cry. Both of them were crying but it the "pain cries" were coming from Olivia. She did something to her foot or ankle. I calmed her down and we went into the back yard to play. After some cuddle time and a few popsicles Olivia seemed to be feeling better but she was limping pretty badly. Mike looked at her foot, it wasn't swollen, she was able to move her toes and she didn't seem to be in pain when he touched or handled her foot.

This morning Olivia woke up extra early and as she came out of her bedroom she was limping so badly she could barely walk. She was also crying in pain with each step. I completely freaked out. Olivia was moving around but she wasn't able to walk, she would stand up and then try to take a step and then fall over and crawl instead. I called and got her a doctor appointment at Ft. Bragg and then I called our nurse practitioner at Duke to fill him in and get his advice. They told me to give Olivia an extra dose of hydracortisone and get copies of any x-rays. We headed off to the doctor at Ft. Bragg. We saw a different doctor today at Ft. Bragg and she was really great. At the doctor Olivia proceeded to demonstrate that I was completely over-reacting! She walked around, she danced, she marched, she stomped up and down on stairs, she kicked a ball. The doctor thoroughly checked her out and pronounced that nothing was broken she most likely had strained a muscle.

Picnics and Pony Rides

The weather here has been beautiful! I think we're still adjusting from the experience of living in Washington state. It still seems surreal to have so many days of sunshine in a row. We had a busy weekend but it was a good one. Mike was off on Friday again, he's been off every Friday for almost the last month (that makes his working till 7 or 8 during the rest of the week much easier). We started off the week with a date night. We were determined to see a movie, we haven't been to a movie in ages but we had a really hard time deciding on one. Movies have become such a treat that we really wanted to make sure we were seeing something that was "big screen" worthy and there just didn't seem to be that many options. Mike wanted to see "Revenge of the Titans" and I was leaning more towards "Date Night". We finally settled on "Percy Jackson and the Olympians". We had time for drinks and appetizers before the movie and then we headed over to the theater. We're still learning our way around and in our attempts to find the nice movie theater we ended up at the wrong movie theater and they didn't have the movie that we had decided on. They seemed to have 12 screens all showing "Revenge of the Titans" in 3D. Mike was thrilled, I was not as excited but decided to make myself feel better by spending more money than our movie tickets had cost at the concession stand.

On Saturday I headed out bright and early to do our weekly grocery shopping. It's actually been several weeks since I've been grocery shopping. We've learned that for us it makes such a huge difference when I plan our menu ahead of time and we got a little off track over the last couple of weeks. I got home just in time for us to head over to our neighborhood Picnic. The homeowners association put together a fabulous BBQ. They provided fried chicken, everybody brought a dish to share. There seemed to be a lot of people there but it never seemed crowded and of course we were outside so we weren't worried about Olivia. We met up with some friends there and had a great time. The girl scout troop was also selling tickets for pony rides. I felt guilty for not buying a single box of girl scout cookies this year so I bought a ticket. I was sure that Olivia would not be interested but Peter might. We arrived at the pony ride area towards the end of the day and for an extra $2 they said we could all ride so Mike, Olivia, Peter and I all got into the buggy for our pony ride. Peter enjoyed it, although he insisted that the pony was saying "woof woof". Olivia was kinda oblivious although she did pet the pony. It was fun though.

After a quick break for afternoon nap time we headed over to another BBQ. This time for with some people that work with Mike. There was another little boy who's just a few weeks older than Peter and they had fun playing with each other. Olivia was uncharacteristically un-shy and she spent the evening sitting on different laps according to which snacks the different adults were near and trying to sneak sips of beer (no idea what that was about). It was a really relaxed evening and it was nice to socialize with other people and feel kinda normal. The adults were all really great with Olivia and we all felt so comfortable there. We ended up staying late but we knew it was time to head home with Aiden (the little boy 3 weeks older than Peter) pointed up into the sky and said "moon" and then Peter told him "night night". SO CUTE!

I put the kids to bed while Mike headed off to a poker game. I enjoyed catching up on some of our recorded shows and organizing FRG stuff.

On Sunday I headed out to the mall, alone. It was so nice to be able to really take my time and look at things. The kids both spent some time playing in the back yard on Sunday afternoon and then we had a family movie night. Mike and I sat there in amazement as Olivia and Peter became totally engrossed in the "Princess and the Frog". Olivia's eyes were glued to the TV throughout the entire movie! If you haven't seen the Princess and the Frog it is an adorable movie!

A Boy, a boat, a hat, and a hairdryer

I know that the picture quality is terrible, I took them with my cell when we were in the hotel in Charleston last month. I think the pictures speak for themselves, I have no idea what Peter was doing but he was clearly very busy! We'll save that conversation about electrical appliances and water for later on.

Picture Download

or maybe it's really an upload, I guess technically it's a download and an upload since I downloaded them from my cell phone and uploaded them to the blog. In any case here are some pics of what we've been up too lately.....


Olivia and Peter are really into playing with each other lately.



Peter is ready for the pool, never mind that it's 7 am and he's in the middle of our hotel room (from when we were in Charleston a couple of weeks ago).


Peter reading a book while waiting at clinic.

Day +266 Clinic Recap

Our visit to clinic seemed to flow so smoothly! We were in a room beside the most adorable little boy who is just a few months older than Peter. We met this little guy "H" when just as Olivia was discharged from 5200 (I can't believe it's been over 6 months since she was discharged). It was so magical to see the look on "H" and Peter's faces as they looked at eachother through the sliding glass door. Both Peter and "H" don't get to see many other kids so it was really neat to see how into eachother they were, they gave eachother high 5's through the glass.

Olivia's labs looked fantastic! Really they couldn't look better, her body seems to be working more efficiently lately. It feels like all of a sudden things are coming together, she's not needing as many vitamin and mineral supplements, she's getting more nutrients out of her food. Medically she's doing really well we got comments all day long about how well she's doing and how good she's looking. We're so blessed! As a parent it doesn't always seem like much of this process makes much sense. Some kids do well, some don't. Olivia's unbilical cord stem cells came from a good match but not a perfect one. There were several other kids who had better matches but they have had to face more complications. There doesn't seem to be any correlation. There's so little control we have over any of this. I been in a really reflective mood lately, thinking about all that has happened over the last 9 months. I can't believe it's been 9 months. This is the first time since Olivia was born in that I feel like time has slowed down. Nine months is a long time and when I think of everything we've been through I still feel it. Every single doctor appointment, every lab draw, every scan, every developmental test. But then I look at Peter and I see a little boy not a baby, where did the time go? Speaking of the 9 months it's almost time for Olivia's 9 month post-transplant studies. I'm told these are not very invasive, just a lot of labwork, an echocardiogram, lung function tests, and an EEG. These will hopefully be completed in 2 weeks at our clinic visit. At the 9 month mark they will also test Olivia's immune function again. Now that some of her steroids have been weaned we're hoping that she shows some improved immune function. The doctor did give us the okay to go into some public places with the following guidelines.....outside is always better than inside, go during off peak times, wipe down what we can with lysol, keep a mask handy so that other people will stay away because people fear the mask. They gave us these instructions several weeks ago but we haven't had anywhere to go that I really thought was worth it so we're still pretty carefull. They did give us the OK to stop by Costco on the way home, I spent way too much money on paper products--diapers, wipes, pull ups, paper towels, toilet paper. The glamerous life of a mom, I wish I could go in and spend the money on wine and beer and fruit and cheese and flowers.

That's it for now but I promise to post more pictures soon! I've figured out how to get them off my cell phone so pictures to come.....

Oh and I almost forgot....the best news from clinic is that we can stop Olivia's blood pressue med! My almost 4 year old won't need any more blood pressue medicine!

Rainbow of Heroes and Operation Olivia

The Rainbow of Heroes Walk is the annual fundraiser/reunion for the PBMT program at Duke. On the first Saturday in May, we walk together as a community. Along the way, as we carry balloons with patients' names on them, people stop, talk together, and enjoy each other. Finally, we release the balloons.

The Rainbow of Heroes Walk commemorates and celebrates all Duke Pediatric Blood and Marrow Transplant (PBMT) patients and their families. Refreshments, music, and activities for everyone are provided.

The Walk is not only the main fundraiser for the Duke PBMT Family Support Program. More than that, it is a reunion for patients, families, nurses, therapists, doctors, volunteers, and supporters who have come to know each other through the months-long transplant process.

We have created Operation Olivia to represent our team during the walk. We are having Operation Olivia t-shirts printed to wear during the walk. If you make a contribution to Operation Olivia we will be happy to mail you a special Operation Olivia t-shirt. Please leave a comment with your name, t-shirt size, and address if you would like us to mail you a t-shirt. To make a contribution to Operation Olivia please click here: Donate to Operation Olivia

On the Mend

After an entire week of us all feeling sick I think it's safe to say that we're FINALLY on the mend. Olivia is the only one who ever got a fever and she seemed to bounce back the quickest (thank goodness). Aside from her having to have her breathing treatments 4 times a day instead of just twice a day you'd never know that she was sick. Peter and I are still coughing occasionally but it's much better now and today is the first day all week that I didn't wake up with a pounding headache. During our week of sickness I did discover that the downstairs couch makes an great spot for cuddling with both Olivia and Peter! I discovered that the two of them will happily share a bowl of popcorn and blankets while I moan in sinus induced misery on the opposite side of the couch. I also discovered that Peter loves tv, especially anything of the animated variety and that he knows who Dora is and can say "dora". We went through almost 2 containers of popsicles and I didn't cook dinner for an entire week. We saved a ton of money on groceries and Mike and I both lost at least 5 pounds. Now that I reflect on the week I think that the only thing I was able to accomplish was cleaning out the kids dresser drawers.

Socially Awkward

Last week we were invited to an Easter block party. It was a pot-luck/egg hunt and we were invited by our neighbors that live two streets behind us. My initial thought was YES, can't wait to go! Everyone in our neighborhood seems nice so far but I would love to actually get to know some of our neighbors better. Mike and I talked it over, we were worried about Olivia being around other people. The party was outside and we decided that if it was too crowded we could just leave.

We packed up and off we went. Olivia and I made cupcakes with bright pink frosting and sprinkles. We were nervous but looking forward to meeting our neighbors. We loaded the kids into the stroller and headed over. We were arriving about half an hour late (Peter had been napping). We walked around the corner to see the very picture of suburban bliss. There was a group of kids happily playing tag, several other kids were drawing with chalk on the sidewalk, another group of kids was blowing bubbles. There were groups of parents talking here and there. It looked like everyone was having so much fun. It was one of those beautiful spring nights. The whole scene could have been a commercial for the perfect neighborhood or something. As we walked up we were graciously greeted by our hosts who welcomed us warmly. We unloaded the kids and went over to the bubbles. The kids watched the other kids blowing bubbles for a bit but then that got old. Mike and I looked around for people to talk to but everyone was already involved in conversations. I bravely waved to a few of the ladies I'd met at Bunko but that was it. The highlight was Peter getting to pet a dog. We stayed for about half an hour, we didn't meet anyone, we didn't talk to a single other person. Mike and I both felt so socially awkward. I hope it gets better, it certainly can't get any worse!

Stretched too thin

This morning as I was scrambling to get Olivia's breathing treatment finished and get everything packed up to head to Duke and the doorbell rang. It wasn't even 8am yet and I had no idea who it could be. I was pleasantly surprised to discover that it was the babysitter. Last week I could tell that I was being stretched too thin so I emailed our babysitter a tentative schedule for the month of April. I promised that I could guarantee her 20 hours a month. In addition to the occasional evening function for Mike's work or the even more occasional date night I asked if she was available on Wednesday mornings. My plan was for her to watch both kids on days when we do not have to go to Duke for clinic so I could get some errands done. And then for long clinic days I wanted her to watch Peter here at home so that I didn't have to drag him to Duke and make him endure Olivia's doctors appointments. I hadn't heard back from her for sure (at least I don't think I had, my email inbox is out of control) so I was shocked to see her this morning. I hesitated for a split second and then decided to take my blessings as they come. I asked how long she could stay and then decided to leave Peter here with her while Olivia and I headed to her appointment at Duke.

Olivia and I were able to get on the road even earlier than usual and Peter was still sleeping when we left. We got to Duke in record time. They did a "snot test" (aka RVB) to determine if Olivia has RSV, influenza, or parainfluenza. They quickly and efficiently accessed her port and ran her labs. The nurse practitioner and doctor came in and were concerned with some of Olivia's breathing sounds so they sent her down for a chest x-ray and then we headed back up to the clinic for a breathing treatment. By this point I was mildly concerned about Peter and the babysitter because I'd called her cell and the house phone to update her and hadn't heard anything. Just as Olivia's breathing treatment finished my phone rang....the babysitter had taken Peter outside to play as I'd suggested but she didn't realize that the door would lock behind her and she had locked herself and Peter out of the house. She had gone over to a neighbor's house to borrow their phone to call her husband so he could get my number from her email account and call me. We had one of those hidden rock-key things in the yard but during Sunday's Easter egg hunt Olivia found it and opened it and was trying to eat the key so I took it away from her and put it inside the house on the fireplace mantel. GO FIGURE! I frantically called Mike who dropped everything to run home and let them back into the house. Olivia's lab results were back and her white blood count was back down within normal range at 9.6. Her chest x-ray didn't look too bad but there did seem to be a little mucus so they decided to prescribe an antibiotic just in case. The tests for RSV, parainfluenza and influenza were all negative. Since Mike, Peter and I are also sick then it is most likely that this is something viral. Since Olivia seems to be doing better then the treatment plan is to up her breathing treatments to at least 3 times a day, continue the antibiotic for 7 days, and return to clinic next Wednesday.

I arrived home around 2pm to finally relieve the poor babysitter. She felt terrible but I couldn't possibly be mad at her! I locked Olivia inside the house once by herself when were were living in Washington. Accidents happen and she did the best she could. Peter was fine and loved his time outside! He normally wouldn't get so much time outdoors since we have to be careful about Olivia in the sun.

I'm relieved to know that Olivia seems to be on the mend but I'm exhausted. Mike has a challenging work week and I'm feeling terrible so I have no patience. We're not sleeping well so that just adds to the frustration. I really hope that we just get through this week and all start feeling better soon!

Back to Duke....

We're heading back to Duke tomorrow and hopefully it will just be a quick trip. We're pretty unimpressed with the care we received at Ft. Bragg today and the Duke doctors are unimpressed with the communication that they've had with Olivia's doctor at Ft. Bragg so we're heading to clinic at Duke Wednesday morning. The bad news is that I had to wait for over an hour before the doctor came in to see us and that was after he'd walked by the open door to the room where we were waiting at least 18 times (yes I counted!). After about an hour and a half I flagged down a nurse to see what was going on. She told me they were waiting on the pharmacy to prepare the heparin. I asked if they could do a finger poke instead she insisted that they could not and got visibly irritated when I asked to speak to the doctor. The doctor finally made his way into the room and I asked him what the plan was. He said they were going to do a blood draw to determine her white count and that he wouldn't make us wait around for the results. He said he would call if Olivia's white count was higher than it had been on Monday. He said he would call the doctors at Duke and discuss the plan. I asked about the finger stick and he said that we could do that instead of having her port accessed but we would have to head down to the lab. The doctor that ordered a chest *ray yesterday did not even listen to Olivia's breathing today. Of course I didn't realize this until after we'd left or I absolutely would have made him do a physical e*am. We headed down to the lab where they quickly did the finger stick and ran the labs. We headed home and I put both kids down for naps. I called the doctor twice this afternoon but didn't speak with him. At 7:30 this evening I got a call from the nurse practitioner at Duke, she was wondering if I'd heard from our Ft. Bragg doctor as she was planning on hearing from him today and had not. The nurse practitioner and I discussed our visit today at Ft. Bragg and decided it would be better if Olivia went in to Duke for an appointment on Wednesday. Especially since other members of the family (myself and Peter were also feeling sick--did I mention that, I feel terrible and I know Peter does too). The good news of the day is that Olivia does seem to be feeling a bit better and Mike was able to leave work early so he was home by 5:30 to take care of the kids.

Unplanned Doctor Visit and Interesting New Reading Material

When we woke up this morning I knew we weren't feeling our best. Peter and Olivia both had coughs and runny noses. I didn't feel great but it didn't seem to serious. I thought it might be allergies because everything around here is covered in pollen! Olivia was happy and talkative and her appetite was good so I wasn't too concerned. We settled in on the couch for Olivia's breathing treatment. I noticed that she felt a little warm, she hadn't felt warm at all when she woke up. I was surprised to see a change so quickly. I got out the thermometer, her temp was up to 100.5. I called her doctor at Ft. Bragg and he told us to come in at 1pm. I called the PBMT clinic at Duke to tell them that Olivia had a fever and we were going to be going to our local doctor for the first time. We talked about Olivia's symptoms and which tests they might run. They gave me several pager numbers and promised to follow up with the doctor at Ft. Bragg. I was also given the ok to give Olivia a stress-dose of hydrocortisone. They told me that we could go to Duke if we felt more comfortable but we wouldn't have arrived there any sooner than 1pm. We have to start seeing doctors at Ft. Bragg eventually so we might as well start making the transition. I took Olivia's temp again a couple of times and it was still going up. Before we left the house it was all the way up to 101.6!

Mike was able to meet us at the doctor's office at Ft. Bragg (a pro for Ft. Bragg vs. Duke). When we checked in Olivia's temp had already started to go down a bit. We saw the doctor right away. Initially he was very impressed with how well Olivia looked, she was happy and singing. Then he listened to her lungs and asked if she had been coughing. Yes, she has, she's already had her breathing treatment for the day but she is coughing occasionally. He sent us down the hall for a chest ray (I'm on the netbook so I can't type the letter between "w" and "y"). We headed back to the pediatrician's office. He walked us down the hall so that Olivia's port could be accessed. They actually shut down one of the two rooms that they normally use for well-child immunizations so that we could have a clean area to wait in. There was plenty of room (which was a plus since we would end up being in that room for hours). They had the head nurse for the entire peds clinic access Olivia's port. She was really nice but it was obvious that she hadn't accessed a port in years and I'm sure it didn't help that she didn't have any of the right supplies (I'll have to see if I can pick up a few items when we're at Duke in 2 weeks). Those Duke nurses really are the "Best in the World" (that's one of the sayings around Duke Hospital). Of course they access ports 15 times a day so it's almost second nature to them. Olivia was an absolute champ, she actually fell asleep while they were accessing the port but that was the most nerve wracking part of the day for me. All the nurses at Duke follow the same procedure EVERY SINGLE time they access Olivia's port so it was very scary to see it being done so differently and by someone who clearly wasn't as comfortable doing it.

They did a culture to see if Olivia has an infection but he labs looked pretty good considering her fever. Her white count was only 15 (normal range is between 5 and 12) so its good it wasn't too high. Olivia's fever also broke. The chest *-ray looked good so that was a big relief. They decided to give Olivia a dose of IV antibiotics and we headed on our way. The pharmacy in the Ft. Bragg hospital doesn't prepare a lot of IV meds to be administered outpatient so it took quite a while for the medication to be ready. We finally headed out of the hospital a little after 6pm. Mike wasn't able to stay the entire time, once we knew that it wasn't super serious he was able to head back to work. Peter was only able to nap for about 30 minutes today and he was an absolute angel today! We did leave Ft. Bragg with several new books to add to our library at home. They insisted that we take them with us and they are the most random assortment I just have to share, to be clear these are all children's books. The newest titles in our library include:

• The History of Monster Trucks (probably 3rd or 4th grade level, it has chapters but Peter loved the pictures)
• The Little Red Hen
• If You're Happy and You Know It
• Careers for Women in Computer Science (4th or 5th grade level)
• Cooking on 16th Century Whaling Ships

We're heading back in tomorrow and we're hoping that we won't have to get another dose of antibiotics. Olivia was very happy to get home and she happily went to bed at 8pm.

Easter

We wish you all a Blessed Easter!

This year Easter seemed very strange. We had asked the doctors at clinic last week if we could go to Mass but unfortunately the answer is still no, and especially not at Easter where it's usually more crowded. It's sad that we have so very much to celebrate this year but we're not able to do so. We did enjoy celebrating some of the more secular aspects of Easter.


Olivia and Peter decorated easter eggs. I can honestly say that I helped them each equally. Peter enjoyed our little craft activity so much that we will definitely have to do more of these sorts of things.







The easter bunny did visit our house and left plenty of eggs for the kids to find. I didn't have any expectations for how much or how little Olivia would be interested in the easter egg hunt so I was very presently surprised. Olivia did pick up a few eggs and put them in her basket. Peter also had a blast finding the eggs and putting them into her basket. We had brunch with some friends from Washington who just were transferred here to Ft. Bragg. Ft. Bragg is such a large place, we're really excited to have some other people here that we know.

I took so many egg hunt pictures that I had a really hard time deciding on my favorites so I just made a smilebox show. Enjoy.....

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Step into a Slim Jim

A couple of weeks ago Olivia's doctor suggested that we try giving her a Slim Jim as a snack. We had been taking about Olivia's recent obsession with chewing things. The doctor suggested that we try a slim jim as it would give her something to chew on and it would give her some extra calories. We have tried it and Olivia seems to love Slim Jim's. Funny I've still never in my life tasted one. It doesn't appeal to me at all but she seems to enjoy it. Although she doesn't seem to understand why I'd want to take a picture of her trying to enjoy her snack.

One year, 4 months, and 21 days

Today I looked at Peter and I couldn't find a trace of the little baby who was born one year, 4 months, and 21 days ago. He's 100% toddler, he's all boy, no more baby. It's bittersweet, I miss my little baby but I'm so excited to watch him grow and learn things.

Day +252

Everyone at clinic today commented on how great Olivia looked. I took these pictures with my cell phone, she did look adorable, I just wish I'd gotten a beter pictures. Our visit to clnic was a little anticlimatic, her regular doctor is doing his inpatient rotation upon 5200 and our nurse practicioner is out of town. There are not any major chages we are continuing to decrease one of her steroids and I hope that it continues to lead to an increase in her attention span.