Thursday, April 30, 2009

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.

Thursday, April 23, 2009

A Precious Moment

We have been praying with Lily every night before she goes to sleep since the day we brought her home. We pray for various things, but always for her salvation...that she would come to know Jesus as her Savior. Recently we began asking her who she would like to pray for. Usually she says a family member or two, or some friends. Tonight the conversation went like this:

Robert: "Who do you want to pray for?"
Lily: "Mmmm...Lily...and mommy...and me...and for my salvation too."

After saying this she immediatly closed her eyes and bowed her head to pray. Robert and I just looked at each other with great big smiles on our faces...there were no words. There is no greater gift we could receive than the knowledge that our daughter's eternity is secure in heaven with Jesus. Lord let it be so.

Wednesday, April 15, 2009

United for Easter

This post title has a double meaning:
1...Robert and I were blessed to be able to go see the Steven Curtis Chapman/Michael W. Smith "United" tour on Saturday in Long Beach. It was an amazing show, needless to say. It was the first time seeing Steven in concert since he lost his daughter, Maria, last May. I know I spent pretty much Steven's entire set list in tears. I won't speak for Robert, but let's just say I did hear a sniffle or two come from his direction.:o) Steven is one amazing man of God and I just can't put into words how moving it was to see him up there praising God after going through such a trial. He was so open and honest about how he and his family have been struggling and how they had to decide if they really believed what he had been singing about for so many years. Believe me...they do! It was a blessed night.
2...and even more importantly, Robert and I celebrated our 12th anniversary being "united" in marriage on Easter Sunday! It was kind of neat that our anniversary fell on Easter this year. We went to church in the morning and heard a great message about why we believe what we believe is true. The Christian faith means nothing without the resurrection of Jesus Christ. We learned about the 3 witnesses, Mary, Peter and John, who saw that He was no longer in the tomb. We learned about the hundreds of witnesses who saw and touched Him after He rose from the dead. And we learned how blessed we are because we believe, even though we have not seen.

'I pray that the eyes of your heart may be enlightened, so that you will know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the surpassing greatness of His power toward us who believe. These are in accordance with the working of the strength of His might which He brought about in Christ, when He raised Him from the dead and seated Him at His right hand in the heavenly places, far above all rule and authority and power and dominion, and every name that is named, not only in this age but also in the one to come." Ephesians 1:18-21

After the service we came home to get ready for a luncheon with the family. (First though, Robert had a brief meeting with a couple who is getting married this Friday who's wedding he is shooting. Whoohoo!) We had a great time with them and some wonderful food too. Lily had a blast coloring eggs and searching for them later. Here are some pictures of our day.


Lily and Auntie Ellen coloring and decorating eggs.


The most beautiful eggs I've ever seen!


Lily hunting for eggs. We hid plastic ones though. I didn't want to risk a real one getting left out in the yard...peeeyew!


An adorable picture of Lily by our hydreangea bush.


Showing off her prize.


There were eggs hidden in the cala lillies too.


Another find...so proud!



After the hunting was over, of course she wanted to find out what was inside. So exciting!


Of course there was some candy...



And what good would it be if she didn't get to eat some!?!?



She also got some fun Curious George stamps. Her favortie cartoon and one of her favorite things to do...stamp with mommy!


The raspberry lemon cake I made for dessert. It was more raspberry than lemon, but it was very yummy!


Lily and Nai Nai.

Wednesday, April 1, 2009

Good Grief!

What happened to March? Time flies when you are busy living life. Well, in case there is still anyone out there who checks in on us from time to time, here is a little something I hope will make up for the lack of posting last month!

Lily singing "A Your Adorable". Her favorite version is by Dean Martin. This one is my favorite!

video



And of course, some pictures. First, just a few cards, then on to bigger and better things.


This is the Valentine's Day card Lily and I gave to Robert. I had a ton of fun making this card. Once I got started with the hearts, I just couldn't stop. (Of course this is because our hearts are just overflowing with love for him!)


This is a card we sent to our dear friend who recently lost his mom. We are praying for you M and H...and Lily won't let us forget!



We made these cards at my Stamp-a-Stack class last weekend. So cute and super easy.


I went to get Lily up from her nap one day and look what I found...Snowflake and Panda all tucked in their bed. Too cute.


Snowflake and Panda's mommy very proud of herself for taking such good care of her babies.



I did a spur of the moment photo shoot with my little point and shoot camera. There was something about the way the sun was coming in through the window and lighting up the room that makes me just love these pictures (and not to mention the cutest photo subject ever!).


This picture is blurry, but I just love the laughter...real and genuine. These moments are precious moments.


Here she is once again, being a good mommy. This time to her "costume baby". (She isn't really into naming them yet.)


And last but not least...reading books with Lao Lao. She loves her books and constantly wants us to read to her anything she can find. One of her current favorites is the See's candy catalog. I have no idea where she got that!;o)