22 days!!!

22 days...a small victory for our sweet Maggie Caroline! She made it 22 whole days (out of the last 8 months) with no steroids at all...before relapsing. It's not exactly the outcome we had hoped and prayed for recently. But we are completely and peacefully trusting in God's greater plan.

Her relapse began 2 weeks ago on March 17th. It seemed this time, to be brought on by some simple and mild spring allergies (sneezing, itchy eyes and nose). With nephrotic syndrome, anything that stimulates Maggie's immune system can trigger a relapse. As we have learned, even innocent mild allergies can trigger a relapse. We were able to hold off on starting her steroids for almost another week after her initial onset of protein. But after a week, the symptoms began to show...swelling, fluid retention in her face and belly and discomfort.

She has been back on her full dose of steroids, daily now for a week. She is still measuring a +4 for protein in her urine (scale of 0-4...4 being the highest measurable), but has an occasional 2 or 3. She has been on Lasix daily as well to help rid her body of the excess fluid retention. She gained about 3 pounds of extra fluid weight, and she is about a half pound away from being back close to her "dry" weight. Good progress for just a week! We will be able to start weaning on her dose as soon as she is negative or trace for protein in her urine for 5 straight days.

So 22 days is exciting for us. We are hopeful that her body gained back some immune system function (steroids suppress your immune system) during those 22 days and that her liver rested.

It was amazing to see our true and normal Maggie back for those 22 days. The steroids really affect her little personality and our day to day interactions.

We are uncertain of the future at this time, but feel pretty confident that a kidney biopsy (anesthesia/24 hour hospital stay) and a course of Cytoxan (8 weeks of a daily oral Chemo pill) will be the recommended next treatment plan, based on past conversations with her doctor. We will see her kidney doctor on April 25th and discuss her treatment.

For now we are filled up by God's grace and sufficiency. These last couple of months have been good for both Todd and I and our relationship with the Lord. When we are weak we are reminded by 2nd Corinthians 4:16-18 that there is a greater purpose for the events of life and through, and in Him we are inwardly renewed day by day.

We have found great comfort in Psalms 139 that reminds us that God knows Maggie inside and out, and that He knit her together in my womb with a purpose. We are striving to be close to God so that His purpose is our purpose. We are casting our cares and fears upon Him to carry.

The more priority we give Him in our life, the less we are distracted by the burdens of our circumstances. We are committed to seek God and His wisdom and discernment as we move forward.

Our sweet girl is truly a blessing to our life and home. She has taught her Momma and Daddy so much.

If you happen to read this, would you please pray for her? For complete healing. We are ever so grateful for all of your prayers and concern!

Fervent prayer, can accomplish great things.

Love to all,

Leah

Update on Maggie...

I am overjoyed to report that our Maggie is in remission with her nephrotic syndrome and OFF her steroids now for 8 days!!!!!

Praise the Lord! HE is the great and mighty healer!

The combination of remission and being steroid free is a first for us in 7 months. We honestly did not think we could be any happier...until yesterday. To top these last glorious 8 steroid free days off... yesterday we received information on some lab work that Maggie had drawn last Friday. It was a follow up lab draw to evaluate her levels while in remission and off the steroids. Her labs were basically normal!!!!!

Yes, I said normal.

The key areas of concern were greatly improved. For example, Maggie has had super high cholesterol as a result of the nephrotic syndrome (just one of those crazy side effects from protein spillage). Her cholesterol level has been around 400-450...normal is usually 125-170. Her latest report from last Friday showed her cholesterol was 190! Also, Maggie's albumin (blood protein) levels have always been super low from spilling protein in her urine... around 1.3-1.8... and normal is 3.6-5.1...and Friday's labs showed it at 4.3!!! She also had some liver function labs drawn, since her steroids were processed through her liver, just to evaluate if there has been stress or damage to her liver after 7 months of the drug...and all of her liver levels were normal.

I hate to say it, because it makes me sound pessimistic and faithless...but I was so surprised at the excellent report. I normally don't care for surprises....but this one...I LOVED. We are just so thankful to see that when Mags is back to normal...she is still our healthy, strong, resilient girl. God is so good, and "able to do immeasurably more than all we ask or imagine, according to his power that is at work within us (Ephesians 3:20)".

We are going to continue to stay close to home for the next few weeks, venturing out into the "germy" community as little as possible (trying to keep Maggie from getting any little illnesses). Mags will see her kidney doctor on April 25th, and we would love to be able to "show off" at his office, that Maggie is still in remission and off her steroids. We know that if she doesn't relapse again for a while, then the chemo drug treatment won't be an immediate threat.

However, today was a day to celebrate for us...so we ventured out. Celebrating 8 days with no steroids and excellent lab results, woohoo. So we headed to the park for a picnic lunch and playtime. It has been a beautiful sunny day here...75 degrees and tons of sunshine.

We met mine and Mag's best pals (Sarah & Clayton) at our favorite park and played for 3 hours! Never fear...FYI: we "de-germed", as soon as we got home with a bath and fresh change of clothes. Ha. Yes, I have become THAT mother.

Enjoy some pics from our time at the park!

Love to all,

Leah

Our precious Maggie Caroline...

Got crack...just couldn't resist!

Clayton & Maggie...best pals...and future husband and wife...that is if Sarah & I have any say in the matter! :)

This is Sadie's "scrunchy face" smile...so darn cute!!!

Sweet Sadie-bug...loving some time outdoors too!

Sadie Rose---8 months!

Last Tuesday, the 29th marked our sweet Sadie Rose's 8 month birthday!

She is such a joyous little blessing to our family. She continues to be such an easy going and pleasant little thing. We are loving this smiley, silly, learning constantly, rolling everywhere and super cheerful stage.

Some Sadie Stats...

wt.: 17 lbs 5 oz

Size/clothes: 9 & 12 month, size 3 diapers

Eating habits: Sadie is a great eater! She is up to eating three baby food meals a day, for breakfast, lunch and dinner. Usually oatmeal and a fruit for breakfast, a meat/veggie combo for lunch, and rice cereal, a veggie and a fruit for dinner. She still nurses 4-5 times a day. She is drinking water and juice from a sippy cup. Just a few sips after each meal. She has also started eating "puffs" (for you non-baby people...they are a grain based finger food that looks like dry cereal, that basically melts in their mouths without much chewing).

Sleep: Sadie is a good sleeper, but not a great one. She sleeps from around 8:30 pm until around 8:30 am. She usually wakes around 3-4 am or occasionally 5 for a feed...then goes back to sleep until 8:30. I know technically she is sleeping "through" the night...an 8 hour stretch...but it is still a little rough getting up during the night. She takes 2 naps a day, usually each for 1.5 hour.

Activity: Sadie loves to play...play in the floor, in her exersaucer, in the tub, in the highchair, in the walker....etc. She is learning so much through all of her play time. She really likes her toys that make noise or sing to her. She is not crawling yet, but instead is rolling everywhere. She will get up and rock on all 4's, but hasn't figured out her forward motion. She loves to clap, say "ma-ma-ma-ma" and "da-da-da-da"...she clicks her tongue, and blows "zurberts" (don't know what else to call them?) all the time. Her favorite times of the day are when she first wakes up from sleep, and right after bath time when she is getting lotioned up. She loves her little massage time. Sadie still just has her 2 little bottom teeth. No others in sight, yet.

Sadie loves "face time". She just wiggles, and giggles and jumps whenever you talk to her or look at her, and especially when you go in to get her up from sleep. She gets soooo excited. Her smile makes you feel so loved, happy and important. Funny how a little tiny baby can do that, right?

Sadie-Bug, oh how we love you! You bless us every minute!