Summer Fun

We've been enjoying our summer! Robert has been off from work and Lily and I have enjoyed having him home. We've been doing a lot if fun summer activities like:

BBQ'ing.....yummy!

It's not BBQ if you don't look like this afterwards!



She LOVES corn on the cob.

Lily and Larry

We went along with Lily's best friend Rachel and her family to see Sesame Street Live. Boy was Lily excited! She had no idea where we were going. When we walked into the Nokia theater she said, "Are we going to see a show?" I wish I could have captured the expression on her face when Big Bird came onto the stage. She started jumping, laughing and clapping. What a wonderful memory!

Lily and Rachel with their Elmo balloons. They had so much fun playing together with them after the show.

We went to have breakfast with Aunt Paula and Robert took this picture of Lily afterwards. She looks like such a big girl. My baby is growing up...

Father's Day! Lily and I bought Daddy a new grill for his special day. He was very surprised and excited. We needed it...our old one was just trashed! Lily was so excited for him to see it...probably even more than he was to get it!

Sweet moment. She is truly becomming her daddy's girl.

Lily is growing up so fast. We are already preparing for her 4th birthday...it seems like just yesterday we were celebrating her 1st. She is so independent and LOVES learning! I think homeschooling is going to be a perfect fit for us. She loves working on her pre-K worksheets and practicing writing her letters. She is trying so hard to read. When I'm reading to her she will stop me if there is a word she doesn't understand and ask me what that means. She just continues to amaze us every day. She is such a sweet, caring and giving spirit.

And just to keep you up to date on her Nephrotic Syndrome, she has been prednisone free for 3 months. Both of her relapses happened right at this time so we are praying now that her urine will continue to be free from protein and there will be no relapse. So far all is well. We are so, so blessed.

Tap Tap Tap...

...is this thing still on? Hello there! It's been a while. It seems I've got some catching up to do, and seeing as I have a few people curious about my whereabouts, I figure I'd better get on the ball. Lily is doing incredibly well and growing like a weed. I can't believe how big she is and how much she is talking...we have full-on converstaions now. The rate at which she is learning just blows me away and makes me all the more excited about homeschooling her...although a little nervous at the same time.:o)

She is now in the middle of her second relapse with her Nephrotic Syndrome. She relapsed back in October and the doctor recommended weaning her off of the prednisone at a much slower rate this time so as to avoid another relapse. She will probably be on it through the end of April, but we are praying that this will do the trick and no more relapses!

So of course I've got some pictures for you! These are from back in the fall, and I'll update with more recent pictures again soon...I promise!


On Halloween we took Lily to the "Pumpkin Park". It was a pumpkin patch here in town and she called it the Pumpkin Park because of all the fun things they had to do there. She had a blast! I wasn't sure how she would do on this big slide...it was sooooo high and I was sooooo nervous! She had no problem at all. She climbed right up and slid right back down...3 times!

Way up there ready for the big slide down!

Lily and her best friend Rachel had a play date and we took a walk to the park. They are so very cute together. Rachel even picked out this little panda and purse from the zoo for Lily. I hope they will be best friends forever!

The sweetest thing...

Cooking with Chef Lily. She LOVES to help me bake. Of course she needs to put on her apron and chef's hat also. She is such a good helper!

Carefully pouring...she is quite meticulous.

Disappointing News

Last week Lily had her first relapse with her Nephrotic Syndrome. I kind of saw the writing on the wall a few days before it became official. We still monitor her urine for protein fairly regularly. She usually reads negative or sometimes trace if I check it later in the day. About a week and a half ago she started fluctuating between trace and +1 (the scale runs from negative to +4). As soon as I saw the +1, I knew it was coming back, even though I was hoping it was a fluke. Then last Wednesday she came down with a 103 degree fever and I knew it was back. The next morning she was +4...full blown relapse. While this was disappointing, it was not surprising. 70% of kids will have relapses, so we expected it even though we prayed for the best. I called her Pediatric Nephrologist and told her what was going on. She told us to wait one more day and if she was still +4 to go ahead and start her back on the prednisone. Ugh. I do not like that stuff. The next morning she was still +4 so we started the medicine, remembering full well the complete meltdown she had the first time back in October...45 minutes of inconsolable meltdown. This time Lily has handled the medicine very well. The only side effects I'm noticing so far are a few moments during the day where she will just kind of stare off into space with a blank look on her face. She snaps out of it very quickly, but it can be little unnerving. She's also a bit moody as well...more so than usual.:o) She is only taking half the dosage she did the first time she was diagnosed (only once in the morning instead of twice a day), so that is probably keeping the side effects to a minimum. The good news is that the medicine started working very quickly. She started the prednisone Friday and by Tuesday she was down to a +2 and yesterday was +1. As soon as she reads negative for 3 days in a row, we can start weaning her off. The first time we still had to keep her on the full dose for a month after she was negative. She currently takes 10 ml's every morning (2 teaspoons). We will lower her dose by 2 ml's every 2 weeks as long as she stays negative. So while the weaning off process is long and slow, at least she won't be on it for as long as she was before. I can't tell you enough how blessed we are that the medicine works so well for her. I've read so many stories of children not responding to the prednisone and having to try so many other drugs, and then having to change the dosages on a daily basis to try to "fool' the kidneys. Sometimes the kidneys become "addicted" to the meds and the kids will go back to +4 the minute the dosage is lowered. Lily is a very "average statistic" when it comes to this and for that I am very grateful.

Happy New Year!

Yes, we are still here! We were just having so much fun doing a lot of nothing during Roberts' 3 weeks off that blogging kind of took a major back seat. But we've got lots of catching up to do so grab a cup of coffee and sit a spell if you can.:o)

Christmas, as you can imagine, was a wonderful time. I actually got a bit of a head start so it didn't seem to get too overwhelming. Robert and I vowed to keep things simple this year, however, I think we forgot to pass that message on to the rest of the family! Christmas Day was, I think, a bit overwhelming for Lily. This is one.spoiled. girl (and I mean that in a good way!). I knew it was going to be interesting when she looked at the tree and said, "Too much stuff." Ha! I can't wait to see what she has to say next Christmas!

We had 12 people over to celebrate including: us, of course, Robert's mom and sister, my mom and grandma and our dear friend Martin and his sweet daughter. As a last minute surprise, we found out my cousin Teresa's husband was home early from Iraq. Since they are stationed in San Diego (not too terribly far) we invited them along with their 4 month old son Bryan, to join us. Our little house was quite full and I wouldn't have it any other way! Lily just loves "Baby Bryan" and I'm so glad they were able to join us. It made for a very full, perfect day.

New Year's was spent with our friends Mike and Kerry at their annual New Year's Eve party. Lily managed to stay up until midnight yet again this year while Robert and I were both doing the "head-bob" trying to make it to the ball drop. Another friend of ours was very smart...they watched the live east coast feed and were in bed by 9:05! I'm totally trying that next year.:o) Anyway, Lily had a great time playing and entertaining the other guests. She can be quite the ham when she wants to be.

During the last week of Robert's break, we had our appointment to take Lily in to the specialist regarding her Nephrotic Syndrome. We had to make the trek out to Ventura by 8:45am. It's about a 45 minute drive for us. (Never mind the fact there happens to be a Nephrotic Specialist across the hall from Lily's pediatrician...10 minutes away. But they are not on our insurance plan....grrrrr.) But the appointment went great. She said our pediatrician had done everything right and even though protocol said to keep her on her current dose of prednisone until the end of January and then reduce from there, she thought Lily had responded incredibly well and that we could go ahead and lower her dosage by 2 ml's every other day. I am very happy and relieved to say, yesterday was her last dose of prednisone! While that is good news, we are also very aware that only 30% of kids have only one bout with this. That means 70% of kids will have at least one and maybe several relapses. We will still need to check her urine once a week to see if she starts leaking any more protein. Often times relapses can occur when a child gets a cold, flu or even an ear infection, so we will especially be on the lookout should she get sick. The good news is that if she does relapse, we can catch it quickly and start treating it before she blows up like she did the first time. The specialist also said that the kids aren't on prednisone for nearly as long as the first time, so they usually are weaned off much more quickly. Obviously we pray that she won't relapse, but at least now we know how to handle it. It's hard to believe this has been a 3 month process. I also know how blessed we are that Lily responded so well and so quickly to the prednisone. I've read many stories of families who have had so many problems with their kids not responding to the prednisone, or even relapsing the minute they start weaning off of it, making the process many months longer and a difficult struggle. We are thankful God answered our prayers and got Lily through this relatively quickly.

Now Robert is back to work and we are back to our regular schedule. We sure did love having him home for so long. Lily has asked every morning if daddy is home. I'm sure she'll be happy come Saturday! I am so grateful for the bond they have formed, especially over the last few months. She is finally and truly becoming a daddy's girl, just like I knew she would. She's not quite ready to push me away just yet, but she loves.her.daddy. We will be making him some extra special Valentine's this year.:o)

Well, I think that's about it for now. I hope your New Year is off to a great start so far. I can't tell you how excited I am to have "American Idol" and finally "24" back! I'll try to keep you updated more frequently now that the holidays are over. Robert and I are both on facebook now too, so you can catch us there from time to time if you want to say hello!

Lily and panda in front of our Christmas tree. She just LOVED Christmas trees this year. Everywhere we went, all she wanted to see were Christmas trees.

She had a blast putting panda in the empty train car and watching him go for a ride. This was not so last year. We tried it then and she just cried as she watched her precious panda disappear around the corner!

Lily and her daddy with Mantha and her daddy. Mantha and Lily just adore each other. This family is one of the best things that happened to us at Lanai. We love you guys!

Look who got a new tricycle for Christmas! She was so excited...when we went into the living room Christmas morning, she saw it and just ran right to it and tried to get on! It's still a little bit big for her, so for now Robert and I help her by pushing her around on it.

Later on Christmas Day. She is looking a little tired here. Actually, I think daddy is looking a little tired here too! We had a great, but exhausting, day.

Lily trying her new bike at the park.

I just had to get a picture of this. Lily loves books and loves to "read" them to her friends. She is just way too cute.

Lily Update

Lily is still doing incredibly well, all things considered. We had another follow up with her doctor today. She wasn't too excited about seeing him, but she was "a bwave guhl". She is still on the full prescribed dose of predisone until the 30th. Starting in December we get to start lowering the doseage to every even day. We have an appointment with the specialist in January, so I'm sure we'll get more detailed information then as far as weaning her off.

I took some cute pictures of Lily at the park the other day. They are pretty good, by my standards.;o) Of course Lily is an easy subject and extrememly photogenic. The first picture is Lily in her ladybug costume at Halloween. At this point she had not been on the predisone very long. It was just long enough for her kidneys to start functioning properly and help her lose all of that water weight, but just before the prednisone started puffing her up. You'll notice quite a big difference here. Either way, she is perfectly beautiful, inside and out.

By the way, we had a very beautiful melt-your-heart moment this morning. I was getting ready for the day as Lily was watching "Bob" (also known as "Veggie Tales"). Out of the blue she said to me, "I keep mommy forever!" She just kills me. I know I've said this before, but I can't say it enough...we are so blessed.

What a sweet smile.

I love this picture...she looks so deep in thought.

Airplane arms...she learned that at gymnastics class.

Pointing at the clouds in the sky. She is so fascinated by everything...I love it.

Big Steps for our Baby Girl

First of all, we have very good news to report from the doctors office. We went to see him on Friday with a urine sample from Lily. The three of us were in the office when the nurse came in with the results. The doctor looked shocked and took off his glasses like he wanted to be sure he was reading it correctly. He very excitedly told me that her urine had negative traces of protein. YEAH!!! This means she will still need to be on the full dose of prednisone for 30 days and then we can start weaning her off of it. I will be so glad. While part of me knows this medicine is obviously helping her, there is another part of me that feels like I'm giving her poison, knowing all of the possible side effects. The only ones the doctor is really worried about is weight gain as her appetite will continue to increase, so we will need to continue to monitor her diet closely. There is also a possibility that she may get diabetes as a side effect. While this would go away once she is off of the prednisone, we would have to treat her as a diabetic until then. We pray all will go smoothly and she won't experience that.

And then there is today...a VERY big day. For many weeks, months even, Lily has been practicing sitting on the potty. I have been telling her that if she goes pee-pee in the potty, she will get M&M's. She repeats it to me all.the.time but has never gone. Today, she came up to me and said, "Mommy...go pee-pee in the potty RIGHT NOW!". I said ok, thinking she was just going to get in another "practice" session. I took her clothes off (yes, all of them. For whatever reason, she likes to be naked on the potty) and set her down. I started cleaning in the bathroom and as I looked over to check on her, she was standing over the potty looking down into it. I looked in and could not believe my eyes. My big girl went pee-pee in the potty! I got so excited. Robert heard and came down the hall to check it out. We both started cheering and clapping. Lily just kept looking at us saying, "Go pee-pee in the potty, get M&M's." So she got her special treat and enjoyed every last one. She was still running around "nekkie" as I was shaking the kithen rugs out back. She came out with me and proceeded to pee on the patio. I explained to her that we only go pee-pee on the potty, not outside! She looked at me and said, "Shayna (our dog) go pee-pee outside!" Aye. We still have some work to do, but what a big day/week for baby Lily!

More Dr. Visits and My First Adoption "Run-In"

So I think poor Lily believes that every time we get in the car we are going to the doctors office. Poor thing. I don't blame her. Every time we have gotten in the car this week it has been to go to the doctor. I think we need to take her out to do something fun...very soon!

Anyway, we had to go back to the doctor this morning to have her TB test read and take another urine sample. The TB is negative and the urine is still chock full of protein. Her weight has gone down a little which is good. He sent us home and said he would call later with prescription info. When he called us, he said he wanted Lily to go to the lab for a couple more blood tests just to be on the safe side and rule out any other possibilities. I was not excited about that! But Lily was such a trooper today. She didn't cry at the office at all. In fact she was talking to the nurse and the doctor and running around like she lived there (which she practically has this week!). So after our morning visit, we went back to the office to pick up the prescription paper and the form for the additional blood work. We headed up to the lab, gave the nurse our paperwork and waited our turn. There was one other lady in the waiting room who was having fun watching Lily. She asked me if I was her mom or if I took care of her. I said, "She is my daughter.". She looked kind of shocked and said, "Oh. But she is Chinese." I said, "Yes. We adopted her." She said, "Oh. Ok." I thought that was the end of it until this brilliant statement came out of her mouth. "She acts like she thinks you are her real mom." ??????? After picking my jaw up off the floor I said, "I AM her real mom." She started to say something, but was saved by the nurse calling her in for her turn. I'm sure she didn't really understand what she was saying, at least I hope not! But after being home for a year and 3 months, this was the first dumb thing I've had said to me. Not too bad!:o)

My Poor Baby

We are in the process of confirming her diagnosis, but it looks like Lily has Childhood Nephrotic Syndrome. I'll start from the beginning...

About a week or two ago, I started noticing Lily was feeling heavier. I figured she must be experiencing a growth spurt, but deep down I had a feeling that something just wasn't right. It wasn't until this last Saturday that Robert and I both noticed something wrong. She woke up that morning with very puffy eyes and a runny nose. Maybe the puffy eyes were caused by the cold she apparently had? We went about our usual routine. Lily was of course her happy funloving self. We took her to the park in the afternoon. At one point she was going down the slide and I noticed her legs seemed to be larger than normal. My first thought was, we have GOT to cut back on the snacks! Sunday morning she woke up still very puffy. We opted not to go to church as she was still dealing with her cold and I didn't want her to be around the other kids. We did, however, decide to keep our lunch date with Robert's mom. When I got her dressed, I noticed the outfit I was putting on her that was a little too big just 1 week before was now fitting her very snug. As I was carrying Lily in the parking lot I couldn't help but think she was just feeling too heavy. I weighed her when we got home and according to the scale, she had put on 4-5 pounds within the last 2-3 weeks. Now Lily is a good eater, but she certainly hasn't eaten enough to warrant that much weight gain. First thing Monday morning I called her pediatrician and made an appointment. The doctor looked at her and confirmed she was definately puffy and bloated. He asked a few questions and mentioned the Nephrotic Syndrome, but needed a urine sample and blood work to confirm it. (Of course all I heard was, "Syndrome blah blah blah kidney blah blah protein blah blah steroids blah blah blah don't worry". Ha!) He attached a little bag to her and I put her diaper back on (the things they have in the medical field never cease to amaze me!). I took her to the park as she was pretty upset about having been to the doctor, and then went back to the office to return the sample. He came back within minutes and said her urine was "loaded with protein" and he was pretty sure of the diagnosis. Basically her kidneys are losing protein so water is moving into the body tissues which is what is causing the swelling. So we left the office and headed to the lab for her blood work. She'd never had her blood drawn like this before and needless to say, I was pretty nervous about it. While the phlebotomist was very nice, she had to poke and dig around in both of Lily's arms and came up with nothing. Lily was screaming her head off...louder than I'd ever heard her scream, and I was going back and forth between wanting to punch that lady in the face and feeling sorry for her because I knew she was doing her best. Lily was just so dehydrated that is was difficult to find her veins. She advised me to take Lily home and give her water, water and more water, and bring her back in the morning. Yes....that's what I want to do...put my daughter through more torture. The nurse felt so badly, she kept handing Lily more and more stickers to try to make her feel better, which actually did work! Anyway, I took her home and tried to keep myself calm about the whole thing. I looked up the syndrome on a website the doctor recommended and felt much better about the prognosis. This morning I got Lily up and when I got her dressed, her feet were so swollen I couldn't even get her shoes on, so she wore her kitty slippers, which she loved! We had a much better experience today. The phlebotomist got Lily's vein on the first try. Lily still screamed the whole time, but at least it's done now. She stopped screaming and was happy again as soon as the needle came out...and let's just say Lily has quite the sticker collection going! So now we go back to the doctor tomorrow to read Lily's TB test. I guess she had to have it again because the treatment for this syndrome is steroids and she has to have a negative TB. We also have to wait for the bloood tests to come back to confirm everything and then the doctor will talk more about her treatment. She will need to be on a low sodium diet, which is just as well anyway...for all of us. The good news is she will outgrow it. She may never even have another bout with this, or she could have them occasionally through her teens. At least it is minor and there will be no permanant damage. I keep wanting to feel sorry for her, but she has no clue there is even anything wrong with her! She is such an amazing little girl...a little trooper. She is so full of joy and laughter. We are so blessed. The doctor told me I should take pictures of her...not sure why. Maybe for the specialist he will refer us to after the blood work comes back? Anyway, here is my poor puffy baby.

Lily having lunch after her horrible no good day at the doctor's office. She would look at the bandages on her arms, then look at me with a very serious face and say, "All done doctor's office." She is so stinkin' cute!

Her legs look really puffy in this picture.
And here she is, cracking herself up, with no clue as to what's going on. Just a happy, sweet little girl.