That Hair!!!

When we adopted Dru, one of my biggest concerns was taking care of her hair. And funny enough it was one of  the things her belly mom was most worried about too. I vividly remember her saying "promise me you'll do her hair every night".  And I have. 

Even today when we had to fill a whole pantry shelf with her home health supplies, my biggest job was to make sure her hair was taken care of ;)

So Dru's African-American hair is crazy. But I love it. There are rules to taking care of it. I can only wash it once a week. When I do bathe her and get her hair wet, I have to comb conditioner through it. 

It's crazy long when it's pulled straight. 

Every night I put moisturizer in it and a leave-in conditioner any time during the day when it's looking dry. 

This hair care product line has saved our lives. Seriously makes for a fuss-free night when it comes to hair.   You can find it at curls.biz if you're  interested. They have baby care, girls, and women products. I am a customer for life. 

After I put everything in her hair, I twist it into little curls and let it dry overnight. In the morning I separate it into individual curls and Gracie-Dru can rock a baby fro.  

I am so grateful that at this point in Dru's illness, that my biggest worry is still her hair. It used to really stress me out, but now it's a sign that life goes on as normal. 

Picture Perfect

My good friend Jen is a fantastic photographer.  As a baby shower gift she gave us a "newborn" shoot for Dru.  Because of all the craziness with schedules we finally got together a couple weeks ago.


It's called a lifestyle shoot, and I loved it.  Nothing too choreographed.  Just me and my girl hanging out.  Next time maybe we will invite Dad. :)

Here are a few of my favorites.  To see more of Jen's work go  here

Live, Laugh and Love

We had another clinic visit today. It went well. Dru is stable. Her PELD score is now 18. We are moving up slowly but surely. 

Most days we spend in onesies and jammies, but when we go to primary's we put our best foot forward. 

Bows and dresses, and if we are really lucky, a smile after labs. It's bittersweet that she's getting so used to being poked that she hardly crys anymore. 

I have to say that she seems to be a bit more mellow since the feeding tube was placed. She's getting all her calories and not waking up as often to be fed in the night. That puts us all in a good mood. 

We were told today that we have a rocky road ahead. From here on out, Dru's health will fluctuate. The trick will be to catch her on a low to boost her PELD score, then "fix" her back to stable. 

We've got this. We are optimistic. We have each other. And a whole lot of extra support that we count as family too. 

In the meantime, we are going to do what we usually do. Live, laugh, and love. And tonight we get the added bonus of celebrating Trey's birthday. Can't believe I have a 13 year old!!!! Yikes!

Dru's first Easter

Our Easter was practically perfect. 

Everyone slept in because we were up late the night before. Dru doesn't wake up as often to eat since she has the feeding tube (it's the little things). 

The kids were all up and we began our yearly tradition of following the jellybean trail to the kids' baskets. 

After so much excitement, Dru took a nap so I went on my run. It's good meditation/prayer time for me. Easter is a holiday of hope and I definitely felt renewed hope for our family today. 

We relaxed a bit, then headed to my mom's for dinner and an Egg Hunt. The kids loved it. Dru seems to be much happier now that she is getting more calories, which equals more sleep for all of us. She even let others hold her and that is a big step. 

I am so grateful for the days that we can do our normal routine and traditions. I don't like to think long-term much anymore because that's when the what-if's start calling. We are learning to take each day minute-by-minute. That in itself is a blessing to our family. It's amazing to me how the little things in life make me the happiest. 

A Tender Moment

I have no picture. This is not even about Dru. I really just want to get this out because I will never want to forget it. 

Last night was rough. Dru was up ALL night. Very uncomfortable and I had no idea what else to do for her. 

She and I were rocking in her room after changing a diaper and making sure her pump was working. I was frazzled, she was whimpering in her fitful sleep. I was soooo tired. 

At this moment, Bill came in and laid on the floor of the nursery and rubbed my feet. He doesn't know it, but I lost it. I quietly cried out my frustration and felt better for it. He may never know what that moment meant for me, but it's moments like that that gives me the strength to keep going. 

Dru's New Accessory

So I think I've been going about this feeding tube business all wrong. 

Yesterday was the day that home health was coming to place Dru's NG tube. It had been weighing heavily on my mind for a few days. Bill thankfully took the day off and sent me on a run (he knows me well). Running is my prayer time and I definitely did that yesterday. The answer to my prayer came to me in a different way. 

If you've ever watched Disney's "The Incredibles", think to the part in the movie where Mr. Incredible and ElastiGirl are arguing about Dash trying out for sports. The line from mom, "THIS IS NOT ABOUT YOU!!!" That is what kept playing in my mind for all of 4 miles. 

This feeding tube has NOTHING to do with me and my insecurities about having a sick baby. This feeding tube has everything to do with my Gracie-Dru and keeping her as strong as possible for what's to come. I need to change my thinking and look at her new accessory as a tool to saving her life. 

Having found some peace with the situation, it still sucked to watch them place it. It wasn't fun, she doesn't like it. Her brothers don't like it. I can't remember the last time Trey let me hug him while he cried. All of that is awful. 

But knowing that she is finally getting enough food, after weeks of watching the number of ounces she drank go down--that brings a peace I wasn't expecting. 

Now if only I can keep her from pulling it out...

PS--Dru's photo shoot on Monday was awesome. I'll post some pictures soon. 

Same Old, Same Old

I love spring. It's getting warm again. Time to plant flowers, do yard work, BBQ. And time for baseball. I love watching our oldest boy, Trey, play ball. 

I am so proud of him.

 

I absolutely love that every weekend is spent at the ballpark. And we talked all last year about how fun it will be to have our baby girl join the fun. 

We have no shortage of helping hands at the games. Our team is our family and we have gotten so much support from them. 

It always makes me happy when we can be as "normal" as possible with Dru's illness. Sure, it's a little harder sometimes. She is a little more irritable and not liking anybody other than mom right now, but it's very important to me that I can be with my boys and husband and Dru to do things that we have always done. I know there will come a time when she might be too sick or too immuno-suppressed to leave the house, so I'm not taking weekends like this for granted. I've always enjoyed these little traditions with my family, but now they have come to mean so much more. 

Lord, Give Me Strength

Sometimes I really want to give up. Sometimes it's really hard to hold it together. Sometimes I just do it so I can show everyone I can handle it all. 

But sometimes I can't.....

Today was hard. And it's really a silly reason. Home Health called today to come and place Dru's feeding tube. It was like a slap in my face--YOUR CHILD IS SICK!!  YOUR CHILD IS DYING , right before my eyes. 

I think I've been in a kind of denial until now. Now there will be a physical sign that she has an illness. 

I felt so unprepared even though I knew this feeding tube was coming. So guess what I did?  I totally lied. I put it off until next week. 

I had scheduled a photo shoot for Dru on Monday and I selfishly want some pictures of her without the tube down her nose so I asked them to schedule us for nurses on Tuesday. I totally lied  and I've been in a funk since. 

Maybe this feeding tube will be no big deal, but today it seemed like it is. I'm sad that my baby girl has to go through so much before she's better. I'm scared that she'll never be better. I'm tired of being positive all the time. Sometimes I just want to turn it all off. 

But then I hold her and know--SHE IS MINE. I will do anything for this angel. And one bad day does not have to be more than that. Tomorrow will be better. We will keep doing what we have to do, because really--what choice do we have?

Spring Break 2014

It's the first day of spring break. That means all the kiddos got to accompany Dru to her clinic appointment at Primary's today. 

Her lab results were about the same as last time so her PELD score is still 17. 

The monkey is not gaining weight though. So a feeding tube is in her near future. I am having a hard time with this. I am not excited to learn how to place a tube down her nose. But more than that, I'm sad that now she will look like a sick baby. No more denial for me, there will be a visual reminder taped to her cheek all day, everyday. 

On the bright side, we might all start getting more sleep if she doesn't wake up every 2-3 hours for a feeding. 

No more whining, we will take it a day at a time and be thrilled that she is as stable as she is right now. 

We are looking forward to our week together and celebrating this little man's fifth birthday tomorrow. 

Have a fantastic Spring Break!!!

Celebrate-It Sunday

The response to our Tshirt fundraiser has been overwhelming. We started out with a small goal of selling 50 shirts and maybe making $400. When our campaign ended, we sold well over 200 shirts and exceeded our monetary goal. 

This has now become much more than just the donated money. Now we are seeing our supporters wear their shirts and send us the pictures, and I'm overwhelmed all over again by the love shown for my baby. 

Friends:

Family:

And people I have never met, but now have a special place in my heart:

And tonight was awesome to go to my mom's house for Sunday dinner and have my entire family show up in their #littlemissmagic tshirts

Our family feels so blessed by the support and love and the things our daughter has taught us about all the good in this world. I believe in magic, and miracles, and family.