Your White Blood Count is WHAT!!! Day +130

We didn't have a scheduled appointment time in clinic today, they told us to just come in when it was convenient. We had to wait in the isolated waiting room for over 2 hours before we were able to get into an exam room and continue to wait to see someone for another hour. That will not happen again, only scheduled appointments from now on please!

The nurse practicioner came in and told me Olivia's white blood count (WBC) was 40. Normal range is between 3.8 and 14 so Olivia's WBC is obviously elevated. Typically when someone has a high WBC it indicates a bacterial infection but that isn't always the case with transplant patients. Basically everyone is confused. Olivia looks good, she's feeling good, she's eating and drinking. She looks and seems pretty healthy with the exception of her crazy high WBC. She is on an antiviral and an antifungal that she's been on since her transplant. She started a 7 day course of an oral antibiotic this past Wednesday and just finished up a 3 day course of IV antibiotics. But her WBC is continuing to rise. They switched her oral antibiotic today and they ordered a CT scan for tomorrow in hopes that they can gather some more information to figure out what's going on. They did 2 sets of blood cultures last week and they are all negative thus far. They did another series today, testing for things like adenovirus and Epstein-Barr Virus. We'll just have to wait and see what happens.

I'm scared, we were expecting to be given the okay to go to Fayettville and now her WBC is high and no one seems to know why. I hope we'll

Chrismas Picture Outtakes

Here are a few of my favorite outtakes from our Christmas photo shoot over the weekend. I don't want to ruin the surprise so you'll have to wait until you get your Christmas card in the mail to see the official Christmas photo. Photography is not one of my talents but I think we got a few cute shots. I love the photo of Mike and Olivia and Peter! We went to Duke Gardens and the weather today was beautiful! Enjoy! If you know that I don't have your address please email me so that I can be sure to send you a card (laurieleiva@msn.com).

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.

Day +125--Keeping things interesting

Throughout this process Olivia has great timing, just when we thing we've got things figured out she decides to spring something new on all of us and today is no exception.

Wednesdays are Olivia's big clinic days so I was expecting a long day. We got into clinic and they accessed her port and drew her labs pretty quickly. I'm so glad that her port is back to working well, it makes things much easier! We saw Olivia's nurse practitioner pretty quickly, he was very impressed with how well Olivia is eating, drinking, and pooping. We even discussed the frequency of Olivia's clinic appointments, he felt comfortable recommending that we go back down to just once a week, meaning we would be able to move back to Fayettville. Olivia was due for her IVIG infusion so we headed over to the day clinic. We got settled in our room, Olivia on the bed with her tray of snacks, Peter on my lap sharing Olivia's snacks. I'm still not exactly sure how it happened but all of a sudden Peter had Olivia's bottle of water and he was holding it upside down spilling water all over the three of us. It happened so quickly but then it seemed like it was happening in slow motion at the same time. All three of us were soaked from the waist down and of course I didn't have a change of clothes for the kids. Olivia and Peter spent the rest of the visit without pants while I attempted to let the air dry. The whole episode was just so funny I couldn't help but laugh.

Our clinic appointment seemed to go pretty smoothly. Peter had an amazing moment today (in addition to the water episode of course) but I'll post a separate entry on that, he deserves the spotlight all to himself. I was able to get Peter to fall asleep for about an hour in the stroller so that I could focus on Olivia.

Olivia's labs came back and her white blood count is surprisingly high, bad news! At this stage in the transplant process a high white blood count is not a good sign. Her white blood count was a little high on Monday but that was an expected result of the IV steroids. Today her white blood count was even higher and the IV steroids were stopped Monday morning. Since Olivia doesn't have any fever and she's clearly feeling well it is most likely a sinus issue. Olivia has a long standing history of sinus issues. They drew more labs to do cultures just to make sure it's not a bacterial blood or line infection. Since we were already here they gave Olivia a dose of IV antibiotics and sent us home with a prescription for a 2 week course of antibiotics. The good news is that they are watching things but they are not concerned yet. The bad news is that they would rather us be closer to Duke, at least until they are able to see if the antibiotics are helping to lower Olivia's white blood count. This means another week here in the apartment. Olivia will need to go in on Friday so that they can draw some labs to see what her white blood count is. Basically Olivia is just keeping things interesting.

I'm really glad that Mike will be here this evening. We will all enjoy seeing him and I will especially appreciate him helping with the kids. Even though Olivia isn't on the IV steroids anymore she's still on a low dose of oral steroids and they are making her so moody and irritable! I love her but she's not very plesant to be around!

Stay-at-home day

Today was one of those long days with the kids. Olivia is still having some "roid-rage" episodes and I found myself having a hard time being a patient and loving parent today. I'm also so shocked at how quickly I noticed some of the negative side effects of the steroids. Olivia was just on IV steroids from Wednesday to Monday morning, just 5 days but in just that short amount of time I saw how weak her leg and trunk muscles became. Olivia went from easily going up and down stairs by herself and running around to not being able to bend over and pick something up from the floor. Peter is getting close to walking so he's actively trying to pull up on anything, he tried to pull up on Olivia a couple of times today and ended up pulling Olivia onto the floor. She's just very unsteady on her feet. It's sad and scary to watch but hopefully she'll start building up her strength up again now that she's not on the IV steroids anymore.

Peter cracks me up 100 times a day. He loves to pull all the pots and pans out to play with them when I'm busy with Olivia. He's quick too! He can empty an entire cabinet in the time it takes me to get Olivia started on her breathing treatment. He's also quite the performer and I got some of his funny facial expressions on camera. Kids with Sanfilippo Syndrome tend to have less control over their facial muscles and expressions so it's a different experience for me to see the funny faces that Peter makes. I got a few on video today.


Our home-made Highchair


I LOVE watching Olivia and Peter play together.

The Mess-Maker

Thank You Lita

"Lita" is Olivia's special name for Mike's mom. It comes from the Spanish word "abuelita" which means granny. Olivia shortens that to "lita". It's a pretty cute nick-name (my mom is not so lucky, Olivia named my mom "pop pop." I think she was a little confused but the name has stuck).


Lita left today after being here to help out for almost 4 weeks. I can't believe that she was here for a month, in some ways it seems like the time has flown by but then in other ways it seems like it stood still. Having Lita here was very helpful to all of us! She basically moved in and unpacked everything at the new house. She washed and cleaned for hours. Everything we own has been in storage since June so it all had to be cleaned before we could let Olivia anywhere near it. Peter and Lita became roomies. They shuffled back and forth between the house in Fayettville and the apartment here so she really did live out of her suitcase for an entire month. I know that she enjoyed the time that she got to spend with Olivia and Peter and I know they enjoyed having her around. I know that she and Mike got to spend some quality time together. I am so grateful that she was here over these last few weeks especially. Olivia and I had some long days at the clinic and I'm so glad that she was here to be with Peter so that he wasn't stuck at the clinic with Olivia and I.

Thank you Lita! We hope to see you again soon!

The best news we could have hoped for! Day +123

I was so apprehensive about my first day in a couple of weeks with both Olivia and Peter but it's going so much better than expected.

Peter is starting to sleep a little bit better. He only woke up and cried for about 45 minutes last night and then slept soundly until 7am this morning. When I went to give Olivia her IV medicine this morning I checked for blood return not expecting to see anything after our long boring weekend in the clinic but to my great surprise her port and line seemed to be working PERFECTLY! I was terrified that it was a fluke and I wanted to get to clinic ASAP so that they could draw blood for her labs so we hurried through our morning routine. Unfortunately I don't have a high chair or a booster seat here (we'd already moved that stuff to Durham) so I didn't have anywhere to put Peter to give him breakfast. I improvised and tied him into the chair with bedsheets. Olivia thought it was hilarious but Peter was as happy as a clam. I'll post some pictures later.

We got to clinic and I had the nicest conversation with another mom in the isolated waiting area. Her daughter was just discharged a few weeks ago from 5200. It was so nice to have another person to talk to. I met her when she was on her initial tour of 5200 when Olivia was still in the hospital. Peter peacefully fell asleep in the stroller while we were waiting and slept all the way through the appointment, waking up just as we were leaving. What a good boy! I am so lucky he's such an easygoing, happy guy! Olivia's port worked beautifully for the nurse and they easily drew Olivia's labs. We really did get the best news we could have hoped for...Olivia is eating and drinking normally, she's not having dihereah anymore, her lungs sound great, she has a bit of a cough but no fever and no vomiting so it's most likely just the same cold that I had last week. They are taking Olivia off the IV steroids and putting her back on oral steroids. We have to stay in Durham until Wednesday for her regular long clinic day but we're hoping we'll be able to leave to go to Fayettville after that appointment. I am so glad that they're taking Olivia off of the IV steroids, those high dosage steroids are no joke! It's shocking to me to see how weak they made Olivia's legs and stomach muscles in just a few days! Last week Olivia was easily going up and down stairs by herself, now after just 4 days of the IV steroids Olivia is having a hard time bending over to pick things up from the floor and stairs are impossible.

Our appointment today was short and sweet. Olivia and Peter are really enjoying playing together and I love being able to have both my children in the same place! Now they are peacefully napping and I'm off to try and catch up on a few zzz's myself.

Good News, Bad News Day +122

Always one to start on a positive note, Olivia is feeling great. Aside from the occassional "roid rage" temper tantrum Olivia is feeling great. She's eating, drinking, and gaining weight. Today at clinic everyone was so impressed with her tolerance and patience. She's such a good girl. Mike and I are both so proud of her.

The bad news is that we are all still unable to draw blood from Olivia's port. Today we headed back to the clinic so that they could try and draw some blood from her port. Unfortunately we didn't have any luck. They put some more "TPA" into her port and then they proceeded to try every hour to draw some blood. We waited a long 4 hours at the clinic today with no luck at all, not even the faintest tint of blood. It looks like tomorrow we will have to do a "dye study" where they infuse a small amount of dye while looking at an x-ray of her chest to see what happens when something is infused into her port. Mike and I are both really apprehensive about this port situation. On one hand we believe that Olivia's port is technically working. The purpose of the port is to allow medications/fluids/etc to be infused into Olivia. Drawing blood for labs is a bonus! Of course we don't want Olivia to have to experience any more discomfort than necessary but you can draw blood from other areas in order to obtain a sample to do various labs. On the other hand we know that we still have a long way ahead of us, Olivia will most likely have her port for at least a year. It is important that we are able to easily draw blood from Olivia for various tests. At this point both Mike and I are sure that if Olivia's port is infusing correctly we do not want her to have undergo another surgery unless it's ABSOLUTELY necessary. If there are any medical professionals out there please feel free to weigh in. We keep going back and forth!

Since I want to end on a positive note I'll share that Olivia and Peter both went to bed easily and I'm enjoying my dinner of wine, cheese and crackers. I hope they sleep well tonight!

The Good, the Bad and the Ugly, Day +121

The Good is that Olivia is feeling much better. She even asked for and ate some eggs and bacon Saturday morning. It's good to see Olivia happy and smiling again. Mike, Sonia, Ricky (mike's brother who lives in DC who drove to Fayettville for the weekend to see us) and Peter all drove to Durham Saturday to spend the night and deliver Peter before Sonia leaves to return to New Orleans next week. Mike got to spend some quality time with Olivia and I while we were waiting at clinic yesterday. Ricky stopped by the clinic for a few minutes before he headed back to D.C. After a long day yesterday Mike and I got to go out to dinner by ourselves, such a rare treat! We had a great time catching up!



The Bad is that yesterday morning I couldn't get blood return when I administered Olivia's morning meds from her port. I was able to infuse the medicine easily so I didn't give it a second thought, figured it was because she'd been sleeping on her stomach all night and thought the professionals at clinic would have no problem. Turns out there was a problem. They couldn't get any blood from her port. They tried countless times. Then they removed the needle and we thought we'd start all over. I put the numbing cream on Olivia so she wouldn't feel the needle. It takes about half an hour for it to work so our waiting began. They tried again, new needle but no luck. Then they tried to put "TPA" in her port. It's a fast acting blood thinner that they put into her port. The idea is that it will help to unclog any clots that may have formed over the opening from the port catheter into her vein. They have to leave this in for an hour and allow it to work before drawing blood. The waiting continued but still no blood. We tried again, waited again, still no blood. Finally around 3:30 they did a finger poke to get the minuscule amount of blood that they needed for Olivia's labs and we continued to wait. They would typically do a dye study to determine how Olivia's port is working but they don't usually do those on weekends. The nurses in clinic contacted the attending up on 5200, his suggestion was to administer some more "TPA" and leave it for 4 hours then return to the hospital to see if it would work. After waiting all day in the clinic (we got there at 10:30 and it was 5pm by this time) that was not okay with us. I suggested that they give Olivia her iv steroids there in clinic and then take the needle out, give everyone a chance to rest over the night and then try again fresh on Sunday. Everyone agreed with this plan and Olivia was able to take a real bath last night.



The ugly is that my dear, sweet, son now turns into a possessed daemon child at night. A couple of weeks ago he was down to getting one bottle a day, right before bed, he rarely finished it. He would go down promptly and sleep through the night. Everyone has different styles of parenting and I haven't been Peter's primary care giver for a couple of weeks now. Peter has gotten accustomed to falling asleep with his bottle, waking up and polishing it off a couple of hours later. And having several more bottles throughout the night whenever he woke up and decided he was bored, must be nice buddy but that's not going to happen any more. I think Peter is in for some rude awakenings this week. Last night Peter woke up around 10:45 to finish off his bottle that I didn't even know was in the crib. I heard him sucking on the empty bottle and I knew we were in for it. My dear sweet son has a bit of a temper and he was pissed! I was less than pleased and can't stand to hear the kids cry. He proceeded to chunk the bottle out of the crib and then scream for the next 2 hours. He refused to be soothed and I refused to give him a bottle. He eats plenty throughout the day, he's wasn't hungry, he was mad and wanted his bottle. Mike has nerves of steel and can handle it (he could have written the stupid Ferber method) but I am less composed. I laid awake the entire time Peter was awake and whenever Mike started to fall asleep I would kick him so he'd wake up and then begin complaining about how Peter has been a little spoiled. I'm telling you it was ugly.

Fortunately Peter slept well after his nocturnal activities and woke up happy at 7 am. I am hoping that Olivia's port works today and they are able to draw blood easily!

Day +120 (for real this time)

Today is actually the real Day +120 and it happens to be my birthday. It was a pretty short day in clinic. We got there a little bit after 9am. Today Olivia's labs looked good, her potassium is a little lower so she'll probably need to get some tomorrow in clinic but her sodium is great. She didn't need any IV fluids today so it was a nice birthday surprise not to have to spend a few hours in the day hospital. She did eat and drink more today. Unfortunately she's just not interested in drinking anything other than water but at least she's starting to drink something. Today we got home from clinic in time for Olivia to take a real nap. She and I snuggled up and took a nice afternoon nap together. It's clear that Olivia is feeling much better but she's still not back to her happy self. Unfortunately I'm also starting to see some of the negative effects of Olivia being back on the high dosages of steroids. She's having some "roid-rage" temper tantrums and her legs and stomach muscles seem a little weaker. Hopefully she'll only have to continue the high dosage IV steroids until Monday and then she'll be able to go back to the lower dosage oral steroids. We'll have to make a trip into clinic on Saturday for more IV fluids and most likely potassium and magnesium but hopefully that will save us a trip on Sunday.

Day +119, looking a little up

Today Olivia seems like she's feeling a little bit better. She's had more to eat and drink today than she did over the last 2 days combined. We still had a long visit at clinic but again the time seems to fly by when I'm only there entertaining one child instead of 2. Today we saw a different attending and a different nurse practitioner and they suggested that we give Olivia a couple more hours of IV fluids again along with some potassium and magnesium. She still isn't peeing as often as she should be and her weight was down a tiny bit from yesterday so I agreed. This is the first time that Olivia has ever received either but it's common for kids to need both via IV following transplant when they aren't really eating much. Olivia was eating so well when we were discharged from 5200 that we kinda skipped over this part. It was nice to hear again that the team really thinks this is just a stomach bug. By this point Olivia has seen 3 of the 7 attendings and they are all telling us they really think that it's just a stomach or intestine bug, not Graft vs. Host Disease. Olivia is feeling much better today. She's talking more and smiling more. She's not back to her normal self but it's clear that she's feeling better. Now she just needs to keep eating and drinking!

We did get a chance to say goodbye to some new friends. Sarah and her mom headed home today. Sarah was admitted about a month after Olivia but they left 5200 the same day. Sarah gave Olivia her treasured Spongebob purse and both Olivia and I think Sarah is pretty cool. We're so excited for them to head home!

This evening was my first time administering IV meds to Olivia in several weeks. I haven't had to give her any IV meds since the beginning of October. I can't remember if I mentioned it yesterday but the treatment plan calls for IV steroids which I administer at home. They leave Olivia's port accessed-meaning they insert a needle attached to a short tubbie and leave it like that for up to 7 days. They put a bandage over the entire thing and then they use the tubbie to administer IV meds, fluids, etc. The bandage is exactly the same as the one that they would put on Olivia's old "tubbie" and it all looks very similar so it doesn't seem to bother Olivia too much.

We'll see what tomorrow brings but I'm really looking forward to a glass of wine now that Olivia is in bed. Tomorrow is my birthday and I think the best present would be Olivia feeling better and having a normal poop but I'm not sure that will happen. I guess we'll find out tomorrow.

What's the plan man? Day +120ish

I had some extra time at clinic today and I was looking at the calendar. Technically today is day +118, not day +120 but who's really looking that carefully.

Today we had another long day at clinic, we got there just after 9am and then we didn't leave until almost 6pm. Olivia's weight was up a tiny bit, she was 15.7 kg (up from yesterday's 15.6 and Monday's 15.3). It is obvious that Olivia is feeling terrible. She's not talking and she's not very active. She's a little bit more interested in eating and drinking but she's just eating a bite or two here and there. She is only interested in drinking water despite my attempts at offering her everything under the sun. Today was her regular "long day" at clinic so at least we were prepared for a long day. After the few long clinic days we had a couple of weeks ago when I had to entertain Olivia and Peter, today seemed surprisingly short. I know I've said it before but I'm so glad that Peter didn't have to spend the day with us at clinic. It was wonderful to walk back in the door to the apartment and see him crawling towards me and waving! His smiling face was the highlight of my day!

Our visit today started with Olivia's lab draws. They knew we'd be in the clinic for a while so they started giving Olivia some more IV fluids as well as another dose of IV antibiotics. Today Olivia also got her monthly anti-pneumonia medicine (a breathing treatment). We started out in an exam room but since Olivia was going to be getting at least 4 hours of IV fluids they moved us to a room in the day hospital so we could be a little more comfortable. Olivia was tired and uncomfortable. She wasn't complaining of any pain but I could tell that something was really bothering her. Dr. Paul came in and we went over things we talked over a few of the possibilities and it became apparent that we would not be leaving this afternoon for Ft. Bragg so I called Mike and he headed here instead. They sent her stool sample off for electron microscopy. They were primarily checking for viruses (rotavirus, adenovirus, and a few others). The plan was to continue to administer the IV fluids and wait for the electron microscopy results. While we were waiting for the results Olivia would receive an IV dose of prednisolone (steroid) as well as an IV dose of flagyl (in case it was a bacterial infection or a parasite). Olivia was still uncomfortable. She and I spent most of the day cuddled up on the bed. We read a few books and watched a cartoon or two. She was just whimpering and there was nothing I could do to make her more comfortable, it was pitiful. Olivia had some tylenol which did seem to help. We got the results of the electron microscopy around 5pm and Dr. Paul and our nurse pratcioner came over to discuss them with us. I'm glad that towards the end of their work day they were happy to sit down and explain things to us and make sure we understood what was going on. Here's the breakdown....

Olivia is not interested in eating or drinking. She's getting dehydrated and she's loosing weight. She is having diarrhea but just one time a day. She isn't experiencing severe cramping but she's not comfortable. This could be caused by....

-a virus but the electron microscopy results were all negative so Olivia does not have one of the "nasty round guys" as Dr. Paul so charmingly put it.

-they are sending her poop for a viral culture but it will take 10-14 days to get the results. Given the time of year it is likely that Olivia could just have a regular old stomach bug. Since she is immune suppressed it would take her a bit longer to fight the bug off. It is a strong possibility that this is what is going on and this would be the best case situation. The IV steroids would help Olivia to feel better and they would still allow her body to fight off the infection. Given Olivia's symptoms it seems like this is what's happening and this is what we're hoping for, it's a best case scenario.

-Olivia could have a MILD case of Graft vs. Host of the gut. Graft vs. Host disease is when the new donor cells recognize Olivia's body as "foreign" and begin attacking. Symptoms of Graft vs. Host of the gut (or GI tract) include severe intestinal inflammation, sloughing of the mucosal membrane, severe diarrhea, abdominal pain, nausea, and vomiting. This is typically diagnosed via intestinal biopsy. Treatment would initially consist of IV steroids which we already started today. At this point it's a little too invasive to do a biopsy. We are going to wait a few days to see if the steroids do anything.

-There is a small chance that Olivia could have been exposed to some sort of parasite. We'll collect another stool sample tomorrow morning so that it can be tested.

-We are able to wait the next 3-4 days to see if the steroids have any affect. With the frequent IV fluids we can wait until the weekend to see if Olivia's appetite perks back up. If she's still not eating or drinking by the weekend then we will move forward with the biopsy. At that point we will also need to discuss alternative ways to get Olivia the nutrition that her body needs. This might include a feeding tube (through the nose and down into the stomach) or going back on IV nutrition.

Bottom line: We're going to be staying in the apartment for at least the next 7-10 days depending on how things go. It is likely we'll be spending thanksgiving here in Durham. Things could get much better very quickly or much worse. We'll just have to try and be patient. I'm pretty depressed tonight. It's hard to see Olivia so uncomfortable. She cannot understand how important for it is for her to eat. My birthday is this Friday and I'm sad that we won't be able to be together as a family. Mike, Peter, and Sonia are headed back to Ft. Bragg tomorrow and I'll remain here with Olivia. I hope our sweet girl feels better soon!

Rough Day (day +119)

On a scale of 1-10 (10 being great) I'd rate Olivia's day today as a 4. She really hasn't felt good all day. She's been pretty fussy and as a parent its so hard to see her suffering and not know what to do to make her feel better. Throughout this process I'd say we definitely had some days that were worse so that helps us put this in perspective but it was still a rough day.

We were back at the clinic first thing this morning. Olivia's weight was up from yesterday (most likely because of all the fluids she received yesterday) and it's a good sign that she's able to retain some of those fluids. She received another dose of IV antibiotics in clinic today and received some more IV fluids. The consensus is that Olivia most likely has a stomach or lower intestine infection. She's already getting very good coverage from the various antibiotics. Her white blood count is not excessive and she hasn't even had the slightest hint of a fever which leads us to believe that it's not a serious infection. Since Olivia is able to eat a few things (today her favorites were fritos and bbq potato chips) and she is only having one bowel movement a day they do not think that it's Graft vs Host disease. Tomorrow is our long day in clinic so we're looking forward to seeing Dr. Paul. The Duke PMBT program has 7 attending physicians. Each of them has a primary day in the outpatient clinic and then they each do a 2 week rotation on 5200. When we were on 5200 we were there just long enough to get to know each of the doctors. Initially it was tough because Olivia (and Mike and I) clearly developed our favorites. Once kids are outpatient they are assigned to a particular Nurse Practitioner. We LOVE our nurse practitioner (I hope I can do a longer post on him later on). In clinic we typically see the same nurse practitioner at every visit but depending on the day of the week we might see a different attending physician. The process might seem a little confusing but I really have come to appreciate it. Since we see the same nurse practitioner they have a good idea of how Olivia is doing on a day-to-day (or visit-to-visit basis), this consistency is very comforting. The different attendings each have their different styles but I really appreciate their different approaches. Of course they always will consult your primary physician before making any real changes so they primary physician stays aware and involved in your treatment plan. We're all encouraged to contact any of the doctors or nurses at any time with questions (and I've done so often throughout this process) they all respond quickly. I don't know if this is unique to Duke or if all things are this nice in the "civilian world" of medicine. It's so drastically different from things in the "army medicine" world. I don't want to go back! Enough about that. I'm looking forward to tomorrow's visit with Dr. Paul and I hope that Olivia starts feeling better soon.

O-N-E

I love Peter's pediatrician in Durham. You know that you spend way too much time at large medical centers when one of the best parts of the appointment is that the office has a small parking lot located just steps from the doctor's office. Every other medical appointment I bring the kids to typically begins with driving onto the military base then searching for a parking spot for a good 10 or 15 minutes, unloading the kids, pulling out the stroller and loading it up, making the 10 minute trek into the hospital to find the right clinic or doctor. Olivia's other visits at Seattle Children's or Duke have been very similar, there's always such a process involved! To me there's something so luxurious about just driving up to a regular old doctor's office and walking in.

Peter's pediatrician had some minor experience with MPS so he's somewhat familiar with Sanfilippo Syndrome and he completed a rotation on the bone marrow transplant unit at the UNC hospital so he knows some about what we're going through with Olivia. Given some of Olivia's developmental issues I think that I'm a little more concerned with developmental milestones than your average parent and our pediatrician is happy to answer all of my questions! Peter is doing really well! He weighs 22lbs and is 17 cm long so he's right at the 50th percentile for both. The doctor isn't surprised because that Peter isn't walking independently yet since he still has quite a bit of his Babinski Reflex and he won't really be ready to walk independently until he grows out of that reflex. Peter is cruising and will walk when you hold onto his hands or when he's pushing something just not independently. Peter is also making a lot of verbal sounds but he's not talking yet. He's making consonant-vowel and consonant-vowel-consonant combinations but he isn't using any particular words to any particular objects. We'll wait 3 more months and then see if there's been any improvement before jumping into speech therapy. Peter's fine motor skills are a little ahead of schedule and he loves to play little games like peek-a-boo. He's also really funny when he wants to show you something. He just started this new thing where he'll grab your hand and then put the object into your hand. He's also started giving hugs and kisses which is the absolute sweetest thing ever!

Here's Peter working out over the weekend!

Day +118 Speed Bump!

Today we had to make an unexpected trip to the clinic. I was sick over the weekend and since Mike and Sonia were around to take care of Olivia and Peter I was able to completely isolate myself. I'm feeling 100 times better today. We were planning on heading back to Durham today for Peter's 12 month well-baby visit. As I got Olivia up this morning I was amazed at the difference in just a few days. She seems so skinny, I knew she'd lost weight. She wasn't herself at all. I knew we'd be going into the clinic as soon as we could get there. We made the drive from our new house to the apartment. I am so glad that I had made the arrangements "just in case" to keep the apartment through Wednesday. I dropped Olivia and Sonia off at the apartment and I headed to the pediatrician with Peter (I'll post seperately about that appointment). After Peter's visit I headed back to the apartment to swap kids and took Olivia into the clinic. We arrived at the clinic just after 11am. I had called ahead to let them know I was bringing Olivia in since we didn't have an appointment. We saw our nurse practicioner as soon as we got there and we knew right away that Olivia would need some IV fluids. We headed over to the day hospital and Olivia got 4 hours of IV fluids and a couple of doses of hydrocortisone as well as a dose of IV antibiotics just in case. It turns out she'd lost almost 2 kilograms (or almost 4 pounds) which is more than 10% of her body weight. They did another "snot test" to make sure that it's not the dreaded H1N1. They don't really think that Olivia has H1N1 but it could be so dangerous to someone with her immune system that we just can't be too careful! We were at the clinic for quite a while, we didn't leave until after 5pm. It's such a blessing to know that Peter is so loved and well taken care of. I will never stop feeling guilty for not being able to be there for him but at least I know that he's safe, happy, and loved even when I'm not with him. Olivia is feeling better now than she was before but she's still not herself. She had a few bites of food and a couple of ounces of water and pedialyte. At this point they don't think it's Graft vs Host disease since she's just having one poop a day but she's just not interested in eating or drinking anything. We're hoping that the hydrocortisone will stimulate her appetite a little bit.

Compared to some of the days we had inpatient today was still a mild day but it's scary. It's so hard to watch Olivia suffering and not to be able to do anything to help her! We're scared about what's going on, it's hard to see Olivia not feeling well. We'll be back at clinc first thing Tuesday morning for some lab work and most likely more IV fluids. I hope that we can move past this speed bump and continue on our road to recovery.

Happy Birthday Peter!

It is so hard for me to believe that Peter is already a year old. We celebrated with a cake. When I compare Olivia and Peter's 1st birthdays they are so different. For Olivia's birthday I went all out, I made invitations by hand, I had her birthday cake picked out weeks in advance, she got tons of presents, I even had gift bags for my nephews who attended Olivia's birthday party. To be fair we did combine Olivia's birthday and the 4th of July (they're only 2 days apart) so the celbration was larger than it might have been otherwise. Peter's birthday was the complete opposite. I went to the store to buy the stuff to make his cake on the morning of his birthday. Mike and I had some errands to run so we took Peter with us and left Olivia with Sonia. We all really enjoyed the time together with just Peter. I don't remember us ever going anywhere with just him before. We just ran errands but Peter had a blast and really enjoyed having Mike and I all to himself. We had birthday cake after dinner. We didn't have any presents for Peter. Peter has received several gifts in the mail but we got so excited about the cake that I completely forgot about the gifts. Their birthdays were so different. Honestly I can't say which I enjoyed more. I loved the social part of Olivia's birthday, the preparation, the decorations but I loved how happy and content that Peter was on his birthday. We still have a few more 1st birthday milestones ahead....a 12 month well-baby exam and some formal pictures. When Olivia turned one I was excited, throughout her first year I looked forward to each and every milestone. I couldn't wait for her to start crawling, walking, talking, etc. With Peter I'm excited to see him grow but I'm also a little sad too, I've missed so much of him being a baby. He's already such a big boy! I miss my little cuddler. Of course I'm excited to see him develop into a boy but it's sad too. I never expected so much of motherhood to be so bittersweet! Okay, enough emotional stuff, lets get to the cake! So my sister had a fantastic cake decorating idea, it didn't come out as well as I envisioned but it was still cute. I couldn't find real food coloring and that gel stuff didn't really work. Peter LOVED it.

Technology Free

We were without phone, Internet, and TV for the better part of last week because of our move and I HATED it. I missed updating our blog and following the other blogs that I enjoy reading. I missed my favorite tv shows. I missed talking on the phone. I did get a lot of stuff done and thanks in large part to all of Mike and Sonia's hard work the previous weekend we're pretty much moved into our new home. I'll try and do a brief update today and hopefully this weekend I'll have more time to share more details.

Olivia
Olivia is continuing to do well. She is very excited to see her old toys (all carefully disinfected of course). She hasn't been eating much this week but after a trip to the store for her favorite snacks she seems to be getting a bit of her appetite back. She's pretty much surviving on water, Popsicles, popcorn, and chips at this point. She's just not interested in eating anything else. Her next doctors appointment is at Duke on Wednesday so we'll see if things improve by then. She's had a break from her physical, occupational, and speech therapy this week. We'll be back in Durham for the first half of next weeks so she'll have one last session with each of her therapists in Durham before we make the transition to receiving these services at home near Ft. Bragg. School is another story. I will have to set things up with the school district here. I'm hoping that they can be accommodating but we'll have to wait and see how things go.

Mike
Mike recovered from his cold and seems to be feeling good despite having staff duty several times over a week and a half period. He completed his first foreign jump last week, he jumped out of a German airplane, using German equipment, with a German jump master. He was thrilled and I wish I would have been able to see it, or maybe I'm glad that I didn't know until the whole thing was over.

Peter
Peter's first birthday was this past Wednesday, November 11th. I cannot believe that he's already a year old. I think it's so hard to realize that he's one because we spent so many months of his first year apart. We celebrated with cake and Peter loved it. More on Peter's birthday on future blog posts....

Laurie
Unfortunately I seem to have caught Mike's cold. I'm terrified that Olivia will get sick. I've sequestered myself in our bedroom, I wear a mask and gloves any time I have to go into one of the "common" areas. I'm loading up on vitamin C and spending a small fortune on Clorox disinfectant wipes and Lysol spray. Today is the first day I really feel ill and I'm hoping to feel better soon. Olivia, Peter, and Sonia all seem to feel fine. I've called the doctors at Duke about my illness and they say that we're doing all that we can. I'm so glad that my mother-in-law is still here to help out. More on Sonia later in future blog posts as well...

The New House
I LOVE our new house. Although after everything we've been through since we moved last June I think I would love anything. Technically the house is smaller than our last house but the floor plan is so much better for our family that it seems huge. It's just 3 bedrooms, 2 and a half bathrooms all on one floor. There is a large bonus room upstairs above the garage that we've turned into a media room/playroom/office area. It's the ultimate multi-purpose place. I think I'll love our new community even more than I liked DuPont. The neigh boors all seem really nice. There aren't quite as many parks as there were in DuPont but there are several community pools and lakes for fishing and paddle boats. I really hope that Olivia will be well enough to be able to enjoy some of these activities this summer. We've unpacked almost everything and now just have to hang things on the walls and organize things. The only complaint I have about the house are the curtains. They are terrible. They are all custom with huge cornices on each window. They are beautifully made but the fabrics are not even close to neutral and clash with our decor. I'll have to work on something. More pictures of our new digs soon!

Technology Issues
The entire community was designed to have "smart technology" and everything is built on a fiber optic network. We thought that it would be fairly simple to move in and establish services but it's been an absolute headache! Technology was one of the big draws to this community. Cable and Internet are included in our rent. It was a big perk as those can be expensive charges. I've spent hours on the phone with various tech support people for the phone and cable company. The phone and cable providers have contracts with the community, they are required to provide the hook-up to the house but are not responsible for or allowed to do anything inside the house. I've made progress in sorting it all out but aren't quite there yet. This weekend we'll need to purchase our own wireless router for Internet. If you have any suggestions for a good wireless router please let me know!

Prayers
Thank you so much for your prayers for Olivia and our family. I have to ask you once again to keep Olivia's friend Rachel's family in your prayers. As I mentioned in an earlier post Rachel passed away last week. Her funeral was on November 11th, please keep her family in your prayers. Rachel was actually from North Carolina and Mike and I were able to attend the visitation this past Tuesday. It was a time of reflection for us and an opportunity to be there for Rachel's parents who were so helpful to us during our time up on 5200. Words cannot begin to express the experience of attending the visitation of a child. I am joyful that she doesn't have to suffer anymore but it is so difficult to be at peace with her passing. I cannot help but compare her situation to Olivia's, there are so many similarities, of course there are differences too. I just have to keep reminding myself that it is HIS will, not mine. I believe that there is a greater plan in all of this. I don't know what God has in store for Rachel any more than I know about his plans for Olivia. I just have to remember that it is all truly in His hands.

Are we really ready?

Mike seems to have recovered for his cold. Peter and Sonia never got sick so it seems it was limited to Mike. He started feeling sick on Tuesday so if it was going to get passed to someone else I think it would have spread by now. Sonia and Mike have both been working like crazy to get things unpacked and cleaned. The carpets have been chemically cleaned, the heating and air conditioning vents have been cleaned. We've all had our seasonal flu vaccines and our h1n1 vaccines. Olivia was cleared to leave the Durham area and our next appointment at clinic isn't until next Wednesday. Even though we've been here for 5 months I feel like this moment snuck up on us. I'm terrified about leaving. I really am more scared about leaving the apartment here than I was about us being discharged from the hospital. I guess when Olivia was discharged from the hospital I knew that all the medical expertise was just a phone call and a 7 minute drive away.....now we'll be a phone call and an hour and a half drive away. I know we're so lucky to be able to relocate close to Duke but an hour and a half still seems far away. I can't imagine how scary it is for those families who move here from hundreds or thousands of miles away to just leave and go home.

Since it's seeming like we'll be able to leave here sooner than I anticipated I haven't been able to get speech, physical, and occupational therapy lined up at home. It's really weird to use that word "home". Ft. Bragg definitely doesn't feel like home, it seems huge and confusing. I think I'll really like our neighborhood and I know I'll love our house but I think we still have a long way to go until it becomes "home". I also haven't even contacted the school district yet. I know that right now our priority is getting our family back under one roof. I know the other things will come together.

Olivia has a couple of other appointments next week and Peter has his 12 month well baby visit with his pediatrician here so I think we'll still be spending a couple of nights at the apartment here. We are making the transition to Ft. Bragg though, whether we're ready or not.

Perspective and Prayers

While I sit here feeling depressed about my bad day I just learned that one of our very dear friends from 5200 passed away today. For more about Rachel's story please visit her blog here. I have no words, prayers for her family please. I pray that they all experience the comfort and love that only God can provide.

Loooooong, Laaaaaazy Saturday

I think every parent knows what its like to have one of those days that seems to drag on forever. Every single thing your child does seems so annoying, Olivia made poor choices today, she was whiny and argumentative. Our day lacked structure and for us that is a plan for disaster. We had an entire day with nothing to do and no where to go. On another day I would look at an empty day as an opportunity but today I woke up tired and cranky and never seemed to get out of my funk. I guess I used up all my patience yesterday. I'm depressed that Olivia and I are stuck here in Durham by ourselves while Mike, Peter, and my mother-in-law are all at our new house unpacking and settling in. Medically Olivia was cleared to leave the Durham area. We could be there with them right now but Mike came down with a cold yesterday so we're grounded here in Durham. Peter just got back and I hate having to be away from him again. Mike sounds terrible and I know he's depressed that he's not able to be with us this weekend. This is the first weekend that we haven't been able to be together since this process started so I know that I should be thankful but instead I'm just sad and grumpy about it. Olivia and I ate nothing but cheese, crackers, and popcorn today. Olivia kept saying that she wanted to watch a movie. She loves to watch movies on the laptop. I'm so sick of watching Disney Princess movies that we watched "Dallas Cowboys Cheerleaders Making the Team" and I told her it was a movie. She actually loved it, there's lots of music and dancing which Olivia found it endlessly entertaining. Don't judge my poor tv choices, I love reality tv! Now Olivia is in bed and already asleep, apparently all our lazing around was tiring for her, or maybe she was just too bored and decided she'd rather sleep. I'm already in bed and getting ready to watch some more cheesy reality tv shows online. I really hope that tomorrow is a better day.

The Big Move

Mike has spent weeks looking for our next home near Ft. Bragg. We decided that we didn't want to live on post. We focused our search around certain school districts. Even though Olivia will not be able to attend school for at least another year we wanted to make sure that we were living in a school district with great resources for special needs students. We loved our house in DuPont but after months of living in a single hospital room and then a small 2 bedroom apartment our priorities for living space have changed. We looked at smaller houses than we would have looked at previously. Mike spent hours and hours looking at houses and he finally found the perfect house! It's in a great neighborhood, it has a cute little yard for the kids to play, the floor plan is great, it is big enough to hold our furniture but we won't have any wasted space. I can't wait to live there.

On Thursday the moving trucks delivered our household goods. Everything has been in storage since June so everything will need to be washed and aired out. Thursday I drove Sonia and Peter to the house so that they can help Mike get things unpacked and washed and ready. The house is so beautiful and Olivia was so excited! She happily ran from room to room, pointing out her familiar possessions. Olivia and I headed back to Durham on Thursday afternoon.

Of course our move is not without complications. We had some challenges in getting the gas turned on and it looks like they won't be able to get it sorted out until early next week which means there's no hot water or heat and there's a gas stove so they can't cook. Mike seems to have a cold so Olivia and I won't be able to see him until he's been symptom free for at least 48 hours.

We're so looking forward to just being able to all be together! More pictures to come!

Lessons in Patience

Today was one of those days where I was given lots of opportunities to practice patience. I'm so exhausted and I'm so very glad to be home!

This morning Olivia decided she was not okay with her breathing treatment. Instead of sitting there happily entertaining as she usually does she dumped my expensive make-up on the floor. Goodbye Laura Mercier mineral foundation. As I tried to clean it up I remembered to be thankful that my mother-in-law is here to help with Peter. It would have been a much bigger mess if Peter had crawled through it.

At clinic we spent 2 hours waiting in the exam room before we saw a doctor. I tried really hard not to get upset that we were having to wait so long for our "scheduled" appointment. I thought of my friend Alli, who's busy husband is completing his surgical rotation in transplant surery (hope I'm saying that right Alli). I reminded myself of all the sacrifices that she and her family make so that her husband can focus on helping others.

While we were waiting in the exam room Olivia was having a parade with her animals and she bumped her head on the side of the sink, hard! She screamed but she didn't black out. She got an enormous bump on her head. The attending physican came in quickly (nothing like a head injury to get everyone's attention) to examine Olivia's head. She bumped her head pretty hard and it swelled up very quickly. They sent us down to have a CT scan of Olivia's Brain. As we were waiting for the CT scan I thought about all the families at Ft. Hood who had to wait for hours yesterday while the base was on "lock-down".

Olivia was so still during her CT scan. She was such a happy camper, she was waving to all the technicians on the other side of the window. Unfortunately her head wasn't positioned properly so they had to do a second scan. I'm so thanful that the technician realized that after all of the excitement today Olivia was just a scared little girl so they let me lay on the scan table with her. I actually laid down right on top of Olivia so that I could hold her hands and she could look into my eyes as they did the scan.

We headed back up to our familiar exam room to wait for someone to review the scan. We had to wait for over an hour. I thought about how happy I was to be able to have this time with Olivia. As Mike and I texted back and forth about our most recent emergency CT scan I was so thanfull that he's here to share this experience with me instead of being deployed.

Yuck! Long Day! I'm glad that I have so many opportunities to practice patience but I really think I've had enough practice for today.

Olivia's appointment itself went well. Her blood pressure is great so she doesn't seem to be negatively affected by discontinuation of one of her blood pressure meds. She's gained a little of the weight that she lost during the first half of the week back. Her counts look good and her platlet count is well over 300 (this was the first thing they double checked after the head injury). Prior to Olivia's head injury they were going to tell us that we didn't have to go back to the clinic until November 18th AND they were going to give us the all clear to go to Ft. Bragg. They did send us home with instructions about what to look for after a head injury. We're going to stick around here through the weekend so that we're not too far from the hospital.

Lots of news--some good, some bad

Today's clinic appointment was long but it went well. It turns out that there are a lot of new patients starting their pre-transplant work up and around this time of year they tend to have lots of annual check-ups, there are also a lot of kids that were recently released the result is that the clinic is packed. We have always had early appointments. Since Olivia is an early riser we would get the first appointment of the day at 9am. Today we arrived at 9am to find that all the rooms were full. One of the nurses was telling me that when she got there at 7:20 there were already 4 families waiting. Interesting since the doctors usually don't arrive until around 9:30 or 10:00, I think they might have had really long days today in clinic. We arrived at 9am but we didn't leave until after 12:30pm, we spent that time waiting for the doctors. It's a long time to spend in a tiny exam room. We received some really good news at clinic today. Olivia doesn't have C. diff and the cultures of her stool have all come back negative. She isn't vomiting anymore. The chance that it is Graft vs. Host is unlikely right now. Today we were able to discontinue one of her antibiotics and one of her blood pressure medicines. Olivia has lost about 1 pound since Monday's appointment. We're hoping that she'll be able to maintain her current weight or gain a little weight by Friday. We have to go into the clinic on Friday for a weight and blood pressure check and if all is well we won't have to go back to clinic until November 18th! This is fantastic news but we're a little apprehensive about getting really excited about it. We're focusing on taking one day at a time.

Olivia and I returned home from clinic to find a very unhappy Peter waiting for us. Apparently Peter had been vomiting and having diarrhea all day. Hmmm, sounds familiar, perhaps Peter caught something from Olivia? I didn't want to take any chances so I left Olivia here to have lunch and take a nap while I headed to the pediatrician's office with Peter. I really like his pediatrician here. I picked him from a list of providers approved by our insurance company. He had worked in the blood and bone marrow transplant unit at the University of North Carolina Chapel Hill and he's familiar with MPS and Sanfilippo Syndrome. He understood my concern given Olivia's compromised immune system he thoroughly examined Peter. He did take a stool sample from Peter and will try and culture that but he thinks that Peter likely has a 24 hour stomach virus. Peter hasn't thrown up since early this afternoon and his diarrhea is getting better. He is still pretty fussy but hopefully he'll start to feel better after a good night's sleep. Perhaps Olivia had the same virus but with her compromised immune system it is taking a little longer than 24 hours to resolve itself. I don't know if we'll ever really figure out exactly what is going on. I just hope everyone is feeling better tomorrow!

Living in the moment

We still don't know what is going on with Olivia's stomach issues. Since Olivia has been on her anti-nausea medicine she hasn't thrown-up. She is still having some stomach craps and diarrhea, she really hasn't eaten much at all today. I called the clinic to see if they had the results of the stool sample tests from yesterday. Olivia does not have C. diff and she doesn't have salmonella. It will take a full 21 days to get final results but so far the cultures have all been negative. That leads me to belive that at this point it's either Graft vs. Host or she's just having stomach issues caused by her other medications. I know that these meds have been rough on Olivia's system, they are rough on all of us. I dread giving them to her, she hates the way they taste. We've tried switching some of the really bad tasting meds to tablet form, that worked for a while but the novelty of that has worn off and she just hates them. Tomorrow is her last dose of one of the really nasty ones (Avelox/moxifloxacin hydrochloride ) and she's scheduled to finish another gross one (Linezolid) this Friday. I hope that they don't end up changing this tomorrow and she really is able to stop these two meds soon. I'm anxious about tomorrow's visit. I'd really like to have answers and I'm nervous that they won't be able to give us answers. We're learning that medicine can't always provide a simple answer, it's almost always more complicated than that. All we can hope for is knowledge so that we can make well informed decisions.

In the mean time I'm really trying to live in the moment so enjoy these pictures of us "living it up".

Day +103--What the heck?

For the last several weeks we've been moving right along, for the most part our clinic appointments were short and sweet, we were even discussing going home next week. Over the last week I think we've hit some road bumps and they're throwing us for a loop. We made unscheduled and unanticipated trips up to the clinic this past Friday and again on Sunday. Today's visit was expected but didn't really go as planned. After her IV dose of anti-nausea medicine last night Olivia felt much better, she was back to playing and laughing. They gave me a prescription for the same anti-nausea medicine at home but by the time we left last night I decided not to get it filled. Olivia wouldn't have been able to have another dose until 4 am and since I knew she'd be asleep then it didn't make much sense to have it filled. I took Olivia into clinic first thing this morning. The good news is that her breathing issues seem to be resolved. She is responding very well to the breathing treatments and her lungs sound completely clear! Her white blood count is down significantly and is back in normal range. She's not dehydrated and her blood chemisries look great. Olivia was still nauseous this morning and was vomiting this morning before I was able to get a dose of anti-nausea medicine into her. Based on our conversations about Olivia's symptoms they suspect that she might have C. diff. From what I understand C. diff is a bacterial infection in your colon and large intestine. These good bacteria are normally present but can be wiped out by antibiotics. Since Olivia is on so many antibiotics it is a reasonable possibility that these antibiotics (while treating the infection in other areas of her body) have wiped out the good bacteria that she needs to keep things working smoothly in her colon. Olivia went to the potty and provided a fabulous stool sample for them to test and hopefully we'll know in another 24 hours or so if we really are dealing with C. diff. If it is C. diff then we would need to have another discussion about treatment options. C. diff can be treated with an antibiotic but that would mean adding another antibiotic to Olivia's growing list of meds. Since Olivia is scheduled to stop her 2 big antibiotics this week we could also wait and see if things resolve themselves when she stops those meds. If the C. diff test is negative then there are a few other possibilities.....the lactaid milk, nausea from her other meds, salmonella. Another possibility is Graft vs. Host disease of the gut. Mike and I are terrified about the possibility of GVH. Olivia seems to have been doing so well! We're reminding ourselves tonight that what is meant to happen will happen and it's not in our hands. Please keep Olivia in your thoughts and prayers tonight.

On another note we'd like to ask that you keep our friend Rachel in your prayers. Rachel is just a year older than Olivia and she became one of our friends when we were up on 5200. Rachel is having a really rough time (and has been for several weeks now). To read more about Rachel's story please visit her website here: http://www.cotaforrachels.com/blog

Good Timing

I am so thankful that my mother-in-law has arrived to help and her timing couldn't be more perfect. Olivia spent all day throwing up. This morning I thought it might have been her medicine. Some changes were made to her medication line-up on Friday and I thought she might still be adjusting to those changes. It's not completely unusual for her to be a little nauseous in the morning. The doctors say that this is pretty common. Chemotherapy can really do a number on your stomach and sometimes it can take months to resolve. I also gave her some Lactaid milk today for the first time. She had been having soy milk but she has seemed really interested in Peter's whole milk so I thought she might like the lactaid milk. The vomiting continued throughout the day even though she only had milk with breakfast. She didn't have a fever and she was still acting like herself. Around 3:30 this afternoon she was still vomiting. She was just having water but it didn't seem like she was able to keep anything in her stomach. I called the clinic and they suggested that we bring her in. I quickly packed up and I headed into the clinic with Olivia. I am so thakful that Sonia was here to help with Peter. I would have hated to drag him into the clinic. Olivia and I arrived around 4:30. They started Olivia on some IV fluids and and gave her some anti-nausea medicine. They drew some labs and we waited for the results. I could tell the anti-nausea medicine made her feel better. Her labs came back showing that she wasn't dehydrated but that her white blood count was very elevated. At this stage in the game an elevated white blood count is an indicator that her body is fighting some type of infection. Olivia is on almost every kid of antibiotic known to man so I don't know how she could even have an infection. Olivia stopped throwing up after her anti-nausea medicine so they eventually let us head home around 8pm with a follow-up appointment first thing Monday morning and a prescription for some anti-nausea medicine.

At this point we're not really sure what's going on. I do know that I am very glad that Sonia is here to help. It was so nice to leave Peter happily here at home instead of having to drag him along with us. With just Olivia to occupy at clinic our time seemed to go by so much faster.