Update on the Pipster...

*This is just a LOT of text about our ongoing experiences with our little Piper. This is super lengthy, but I'm really trying harder to journal better, so bear with me! Pics to come when I figure out how to transfer text message pics to my computer!!!

It's been a really long 2 weeks since I last posted! Although we're initially "out of the woods" with Piper's health, there's still a whole lot of unanswered questions. Poor thing has been put through the ringer this past month. She started throwing up last Saturday night on our way home from dinner. (Nothing better than car throw ups, right???) She threw up ALL night and finally stopped Sunday morning. Beck started throwing up that night too, so we figured they caught the flu bug my nieces had had the week before. Beck was fine by Sunday night; Pippi was not. She started with crazy icky diarrhea Sunday, Monday and Tuesday. Then, Tuesday night, she started throwing up AGAIN! That lasted most of Tuesday night. Seriously, poor, poor baby! At this point, she was barely eating and drinking, and nothing was staying in her system long enough to do any good. I called the pediatrician Wednesday morning and told him that she hadn't had a wet diaper for 36 hours. He sent us to the ER for IV fluids. I was far from prepared (we were at the ENT's office for her post op appt and I had Beck with me too) but we headed to the ER. They got us right back, but it ended up taking 3 1/2 hours total. That's a REALLY long time in a little room with a 21 month old and a 4 year old! The ER doc was suspicious of another UTI because of the renal reflux, so he ordered a urinalysis. The nurses had to cath her and I just cried. It's so hard to have to hold your little one down while they just look at you with ginormous eyes and scream "owie..." over and over again. Then it was time for the IV. We had seen the immunologist that Monday (today was Wednesday) and he wanted a million more tests run to see what's going on with her. We tried a lab in the same building, but they wanted her to come back a total of 4 times to draw all the blood. Seriously?!? She's 1. Not happening. We had planned to take her back to Primary's, but I figured since they were already poking her for an IV, why not just have this hospital run her labs. They agreed and were able to draw 20 ml's for her lab work (a lot for a little one) and then just hook her up to the fluid with the same IV catheter. What a little blessing that was. One less traumatic thing to put her through. Her IV was positional, so they had to do a wet splint to immobilize her little hand. She's definitely not a big fan of IV's. Once it was in, I could snuggle her and she was able to suck her thumb with her other hand, so she was ok. Jenny stopped by about this time to grab Beckett. He was trying so hard to be good, but it's a tad bit frustrating to have to hold down your baby while blood is being drawn and and IV started while your 4 year old is jumping from a chair saying, "I'm just really, really thirsty mom. I'm getting pretty bored mom... Mom, are you having fun???" Lots of great gems from the Beck. Anyways, Jenny came and took him to preschool, and as she was leaving, my mom stopped by on her lunch break to see Pip. Pippi was calm at this point and loved the extra snuggles from her Grandma Jilly. They played Angry Birds on my mom's phone for a long time. Pippi loved it! They gave her quite a bit of fluid and Zofran in her IV to help with nausea. FINALLY, it was time to go. The dr gave us the ok, and we couldn't leave fast enough. We were 1/2 way home when she said, "mommy, owie!!!" and waved her pink coban covered splint at me. They had forgotten to take out her IV! Granted, I was too consumed with leaving to notice either... Needless to say, I removed the IV in the Taco Time drive through. She was a new girl after that. She was able to eat and drink more and more as the night progressed, but still didn't have a wet diaper until the next morning! She was just super dehydrated! She hasn't thrown up since and is back to craziness...

As for me, I think I've handled a lot of this past month really well. The occasional break down, yes, but overall, I think I've done well. My body disagrees! I started itching like crazy the day we found out that Piper's blood smear at Primary's was non malignant. It was on my right side, but since there was no rash, I didn't think much about it. It kept getting more and more persistant. I finally checked out my back and I had a good sized raised patch/rash there. I took antihistamines with no change. FINALLY, I had to run into work last Thursday for a surgery, and I had a dermatologist look at it. Shingles. Super. Just what I needed! They put me on anti virals and a steriod cream. I have felt like a leper! It took almost another week for the blisters to completely scab over, and until then I couldn't be around anyone who either hadn't had chicken pox, or hadn't been vaccinated (babies under 1, etc.). The meds have definitely sped up the process, but the itching is still pretty crazy!

We're all on the mend around here now. I'm no longer contagious, Piper is eating and drinking, London never got sick (thank heavens!) and things are good! We're waiting on the test results and they should be back within the week. Dr. Jones, the immunologist, is running tests that basically break down and examine the leukocytes to see why 30% are still abnormal. Hopefully we'll get some answers and hopefully some more good news. We'll just wait and see! For now, we're really looking foreward to Easter and all the fun it brings. It's been 6 weeks since I was last at church because Piper's dr. recommended not taking her indefinitely and because of the shingles. We're going to at least go to Sacrament meeting this Easter Sunday, and I can't wait to go! I've really, really missed it. For now, we'll just switch every other Sunday, with one of us staying home with the baby, and the other taking the big kids. Hopefully it won't be for much longer!

On a lighter note, we were driving home from York and Jenny's tonight and I was talking to the kiddos about why we celebrate Easter. London, very seriously, said, "I think Heavenly Father just really, really wants to make kids smile!" Then she said, "do we celebrate because Jesus died?" I started explaining that we celebrate Easter to remember Christ's resurrection when Beck jumped in with this..."But mommy, I just really need to know more about dinosaurs and why they all died when the earth got so cold..." Completely valid in the Easter conversation, right? That's the Becksta for ya! Smart as a whip, but has the most random thought processes of anyone I know!

More updates to come!!!

The Waiting Game is Over...

In the waiting room before surgery! Daddy and Pippi!

In her hospita gown!

It's been a really long 3 weeks. Really, really long. Piper had surgery 3 weeks ago. It was routine; replacing ear tubes, removing adenoids, cleaning out her sinuses, allergy testing, and blood work. We were doing blood work because she always seems to pick up every bug going around and is plagued with icky infections all the time. Well, surgery went great and we took her home. My mom happens to work for the ENT that performed her surgery, so I called later that day to check on the lab results. They weren't good. In fact, they were really abnormal. As she read me the results over the phone, my heart just dropped. I know a thing or two about blood counts, and I knew what I was hearing was bad news. My mom ended up showing the labs to another doc who then ran more labs, which were also abnormal. My mom was desperately trying to keep me calm, but I knew what it could be; leukemia. Dang. I spent the next 24 hours crying and crying. It wasn't until the next day that a pathologist was able to diagnose it as non-malignant lymphocytosis. He also said that it resembled Epstein Barr virus. I was just happy with the "non-malignant" part. We were still concerned about the other labs, but relieved. We were referred to an immunologist because her immunoglobins were really low, which meant that her immune system wasn't 100%. We scheduled an appointment for 2 weeks later and felt good about our decision. A week later, I was changing her diaper when I noticed a pretty sizeable lymph node in her left groin area. I freaked out just a bit and we took her right to the dr. Pippi's regular pediatrician wasn't in, so we saw someone else. He examined her and drew more blood to check the the Epstein Barr virus, a complete blood count, and her LDH levels. 2 days later, I noticed a handful of enlarged lymph nodes in her right groin area. I called her regular pediatrician to talk over the lab results and inform him of the new nodes. I happened to see and get a copy of the new lab results while I was in a surgery the same day, so I had them in front of me as I spoke to the Dr. He told me that all the labs looked really good; that her while count was down to 7. I interrupted him and told him that he had the wrong patient; Piper's count was almost 15. I was also bummed because the Epstein Barr virus panel had come back negative. (Not that I WANTED the virus, but it would have explained the lab work and enlarged lymph nodes). My confidence isn't real high at this point... After some choice words, I felt like I wasn't being heard, so I opted to not see the pediatrician at this point, and just keep our appt with the immunologist the following week.

This past Tuesday (the 5th), we saw the immunologist. He looked over Pip's labs for a good 40 minutes prior to meeting with us. He said that her immunoglobins were actually within the pediatric range, but he wasn't sure how properly they were functioning. Then he expressed concern over her other lab work. He asked that we give him 48 hours to consult with Primary Children's Hospital and another colleague, but said that he believed that she either had an immune deficiency disorder or a form of cancer. Back to the "C" word. I just cried and cried. We expected to hear back from him Thursday, but first thing Wednesday morning, he called and suggested that she have a bone marrow biopsy done. He collaberated with our pediatrician and we waited to get it scheduled. The pediatrician finally got ahold of the pediatric oncologist at Primarys, but that Dr. wanted all her labs repeated and a blood smear done so that he could look at it himself. Her last blood smear showed 30% atypical lymphocytes. Not real encouraging. We then remembered that Matt's cousin, Emily, is an Infectious Disease specialist at Primarys. We got ahold of her and sent her Pip's labs. She then ordered several more tests on top of the pediatricians orders. She was not only concerned about the blood work, but in the fact that Piper had a bad UTI last month. She said protocol for a child under 2 with a UTI is to run a renal ultrasound and also a VCUG (a voiding cystourethrogram). We figured if we were already going to be down there we might as well get ALL these tests done! We headed down to Primary's and did the blood work first. Pippi was a champ. Then onto the renal ultrasound. Pippi charmed the tech and was darling. The kidneys looked great. Then onto the VCUG, our last test. They had to put a catheter in and flush the bladder with contrast dye to see if the urethral sphincters were working. Immediately, we saw the contrast go right on up to the kidneys, meaning she has kidney reflux. She was a grade 3 on one side and a grade 2 on the other. She's been grabbing at her back since her UTI, so this just might explain it. Then more waiting....

We headed up to the lab to get what results were already done. Her blood counts looked pretty good, so I was happy. The majority weren't done yet, so we decided to go home and wait it out. They said the blood smear would be read in the morning by the oncologist, and that he'd talk to our pediatrician. This morning, I started calling for results. I left messages, but never heard back. I made sure the oncologist did indeed have the blood smear. He did, but hadn't read it yet. More waiting... I called the pediatrician's office again. Left another message. FINALLY, at almost 6pm, he called with the news. Same atypical lymphocytes, but definitely NOT malignant, so no bone marrow biopsy! We're thrilled. The oncologist said it looks like some crazy virus that her little body is fighting, and probably has been for quite some time. We've done several viral screening panels, to no avail. After 3 LONG weeks with lots of crying and even more praying, our little girl is going to be okay. We need to follow up with the immunologist and also make an appointment with the pediatric urologist, but knowing that she's not in immediate danger is wonderful. I've learned a lot during this process; first, always, always ask to see test results yourself. It's my right, and I want to make sure that the dr. is reading MY test results, and not someone elses. Also, second opinions are a good idea. More than anything, prayer works. This little girl has had about a million prayers sent her way, and I have felt them. I think of those out there with sick kids. We played the waiting game for only 3 weeks, and some do it for months or years. I can't even imagine. We're just happy to a have some good news for now!

Altruism...

Altruism: the selfless concern for the welfare of others. I often think of this word when I try and describe my London. Although she can be more than difficult, she is always thinking of others. We happened to be watching the news the morning of the earthquake/tsumani in Japan. She immediately asked what we could do to help. She suggested that we call church headquarters, which I did. It was too early for anyone to answer. She then asked if we could put together humanitarian kits to send over there. I said sure. She then called the local Walmart (yes, she did it herself, asking for the manager and everything) to see if they could donate any supplies. They said no. Lame, right? We were on the phone all morning seeing what we could do to help. I was in charge of "Fairytale Friday" in London's class that day. Instead of the usual story and activity/craft, London wanted to write letters to the children affected by the earthquake. Her entire class made cards that were priceless.

The next day, leave it to Londybug to set up a charity bake sale! She made the pink lemonade herself, helped with the cupcakes, and set up shop between holes at the golf course around the corner. She made a huge, be it a little "busy" sign to wave at cars coming by. As cars stopped and golfers passed, she told them "half the proceeds of this sale are going to help the kids in Japan. I'm giving it to the "Woods Cross!" (Red Cross) The other half is going to Primary Childrens Hospital to help kids with cancer." She honestly came up with this all on her own. She has such a selfless heart. She must be quite the fundraiser because in a little over an hour, her little cupcake stand pulled in $87.00 in donations! She was so excited to be able to help! Words cannot express how proud I am of my girl. Not many 6 year olds are as affected by world events like she is. She is one of a kind!

(the above pics are the card that Londy sent. The front reads; To Jappanys (Japanese) From Utah and the persons name is London.

This one almost made me pee my pants...

More cuteness