Sickle Cell Disease

Leila has officially been diagnosed with Sickle Cell Disease - the Hemoglobin SS Type, which is the most severe and most common type. We have started seeing the doctors at the Pediatric  Hematology/Oncology Dept. at VCU, and they are awesome. I can't say enough good things about her care so far. They are incredibly attentive, smart and available. Because she has the most severe type she is able to take the only medication available for sickle cell - Hydroxyurea. It's actually a chemo drug but in small doses like Leila is taking it doesn't have the side effects of chemo. It will hopefully prolong her life and decrease the frequency and severity of the pain crises that sickle cell is known for. The lifespan in 1973 was only 14 years old (!!!!)  and right now it's in the 40s though they don't yet know how much longer regularly taking hydroxyurea will add to it. Marriage, babies, career - a momma starts to think about all these things when learning these statistics. The next day is never guaranteed but still, no parent likes to think they will live longer than their child. No worrying about tomorrow when today has enough trouble of it's own (Matt. 6:34 paraphrase). I think I preach this to myself every hour. Worry is not becoming but a hard habit to break!

We also learned during our almost 4 hour visit at VCU that a fever over 100.4 is a medical emergency, so we learned quickly what that looked like when Leila spiked a 103 fever several days later - something we'd normally treat at home with Advil, rest and a cool compress. Thankfully, Grandma and Grandpa were in town, so Geoff and I took Leila to the ER. They ruled out some major infections that would be much harder for her body to fight due to SS, hooked her up to an IV to give her fluids and an antibiotic and then sent us home. She recovered quickly (our wallet did not - eek! We found out after the fact we can start at Kid Med next time, which is a little more budget friendly). A few days later we found some sores on her tongue that were causing a ton of pain, so we took a trip to the pediatrician after we had already visited the eye doctor that morning (guess who despises doctor visits now?! Leila!). He thought it was related to her virus that had put her in the ER, so he prescribed some fancy mouthwash that helped numb her mouth so she could at least eat. Whew! I am not a momma that is quick to run to the doctor but the doctors are quick to call me in with Miss Leila, so we obey.

The hematologist said to expect this first year to be tough because she doesn't have American immunities, so she'll likely catch a lot of little things at school that will lead to doctor visits. Prayers, a healthy diet and thieves oil (essential oil that is supposed to help ward off germs - we will try it!) are on the daily docket. We also have to keep her well hydrated. Sounds easy, right? Not when you've grown up having very little water in Africa because getting clean water was not easy. I'm now the water Nazi (aka annoying mom). 

This is a new road for us - regular doctor visits, medicine for life, kid viruses necessitating ER visits. We are grateful we seem to already have a good team in place and even more thankful to have our sweet girl home. Thank you for praying with us!

Summer Fun

We have been living it up, while also trying not to do too much (very hard thing for us do-ers). The kids are having fun, having cranky days and momma and daddy are excited for a week at the beach next week and routine the week after! School starts September 8, so I've entered the school supply world and been filling in on clothing that we still need. I'm also gearing up for the MUMS group I lead, which is fun but also like a part-time job this time of year. I'm slightly weary. Coffee and Jesus are my friends keeping me going. Here's a few pictures from the last few weeks.

Celebrating Rodrigo's birthday at our place.

Lake Anna fun with the Bell family! We went high class for a weekend and left the camper to stay in their house on the lake. They were wonderful hosts and love Niger like we do.

Nothing like a day at the pools of Country Club of Virginia. Yep, that's how we roll. Ok, not really. We were just invited for the day to experience a world I have never known.

MUMS play date on our farm! A dozen mommas and 20+ kids - crazy fun!

Flower girl dress shopping for my brother's November wedding. Very fun except that I had to say No to all of Leila's requests for things. Mean momma. And no dresses yet, but we have lots of online options.

Summer porch sitting.

A birthday party for our niece, Layne at SkyZone - a very fun indoor trampoline place. I joined in on the fun and jumped, too. The kids were so excited to see "my tricks," which were nothing more than some old cheerleading moves. Thankfully, that satisfied them!

Things I'm Learning

I hate that I have not posted sooner! Life is full, and I have never been so needed. I'm serious. :) Getting more than a few minutes on the computer is very challenging, so blogging will be minimal until school starts. Here are some other things I'm learning:

It is easier to take 3 children to the doctor or Busch Gardens than it is to take them to Target or the grocery store. 

Children will cry for rice. Seriously. Leila was so upset the other day, and I couldn't figure out why. So after holding her and sitting with her for a while, she finally said it was because she wasn't having rice today. Oh boy. She didn't get rice that day, but we had it the next. I decided since she has left so many other things behind in Niger, having rice almost every day is something we can do. It's a comfort food for her. (I bought a rice maker with some birthday money, and that has been a lifesaver!). 

I love summertime for it's freedom from regular schedules, but I dislike the very little alone moments for me it affords. Welcome to motherhood, right?! I don't know how my homeschooling moms do it. I have gotten over my guilt mostly that I don't think I can do that like they can, but really, y'all are amazing. God will have to speak LOUD and clear if homeschooling is in His plans for my family.

Geoff is awesome. A.W.E.S.O.M.E. He treated me to a night away for my birthday with one of my dearest friends, Brandi. It came with a massage and everything. He spoils me and knows what I need before I even recognize it. I'm so thankful for him and love him more than I ever knew I could.

Sometimes we have silent time in the car so that I can have 10 minutes without someone saying, "Momma, I need...", "Momma, look...", "Momma, he/she hit me..." Yet, being a momma and being able to be at home is such a gift I don't take for granted (most of the time). 

My heart has room to love 3 children, and it has been faster and easier to love Leila as my daughter than I thought. I have loved her from the beginning of our decision to adopt her 2.5 years ago, but we didn't bond, she didn't "need" me, and we didn't really know one another until our journey started 2 months ago to bring her home. When you have a child with you since infancy, you have time to learn about them, love them, know what they like, etc. before they really understand, can read your emotions, talk, etc. With a 10 year old, she sees, she hears, she's felt abandoned, lost, rejection. I was worried, but God knew. When He put this desire to adopt in Geoff and my hearts, He was sculpting and preparing us to love a child who had endured more heartache, pain and rejection than either of us has. He knew. And I love her so dearly. I love to hold her and pick her up and show her things and say, "this is my daughter, Leila." How awesome is that? What a gift we have been given to be able to adopt this amazing little girl. She is brave, really. She knew 16 months before we picked her up that we were going to adopt her. She could have said, "no thanks." She barely knew us, had NO IDEA what America was like, we were white and white people in Africa don't always have a good reputation, she had heard rumors that were not positive about adoption, and yet, she came. That is courage. Leila has truly embraced her new life. Occasionally, she asks to visit her friends at the orphanage. This is hard. We encourage her to make pictures and talk about things we can send them with the next mission team that goes over, and she seems happy with that idea. Today we picked out some pictures of herself to send over. I wonder if she really understands the magnitude of her being here and them being there. Pray for her and this. It must be hard for her mind to understand the physical distance and the emotional challenges that would come from a visit. We tell her when she's older, she'll be ready, and we will go back to see them. 

Here are some pictures from the last few weeks. We are blessed. And for many of you that I owe a phone call or thank you note to, thank you for being patient with me while I try to balance it all. School supplies for 3, school registration for 3, doctor visits for 3, cooking for 3. Oh, did I mention there were now 3?! Oh, you have more than 3 children? Superhero. 

Loving on sweet Sadie. Leila will be a wonderful babysitter when she's older. 

First visit to the dentist. No cavities=a miracle!!! I have been praying for her teeth since we knew we were going to adopt her because they really looked awful and chewing on sticks was the mode of cleaning (vs. a toothbrush). God answered!

The dentist was able to use some tools they hadn't used in years. Everyone was so excited at the before and after because she had so much tartar and buildup that was visible. 

Swimming lessons! Her nickname is Fish because this girl loves to swim. 

At the pediatrician's office sporting their t-shirts in support of Caleb (the almost 4 year old son of my cousin and very dear friend, Blair). Leila has gained 6 pounds in 9 weeks, by the way. And this week we see the hematologist about sickle cell anemia next steps.

First and only trip to Busch Gardens this year thanks to a free ticket. Leila LOVED it! How can you not?! We enjoyed being with Kelly and the Klug children, too. 

Teacup fun!

Grover rollercoaster - woohoo!

Leila and Mary-Michael have had an immediate connection and affection for one another since the beginning. Frazier has played out the role of annoying little brother, so we have to be more intentional (i.e. forceful) at getting him connected with his sisters. He and Mary-Michael have always gotten along very well, so this has been an adjustment. I have shed a few tears over this, but it is getting better. 

Bye-bye Busch Gardens. 

Playtime with Nathan and Kaila. The Rivas family moved in to the guesthouse a few weeks after we returned from Niger, and it has been a huge blessing. Not only do we love them as friends, but they were instrumental in making our adoption happen, so we are grateful to be able to give back to them for all they've done for our family. Plus, Leila is very comfortable around them, and they speak French since they lived in Niger for 12+ years. 

Juanita and I joined some other friends at the Outcry concert in Northern VA. What a beautiful picture seeing thousands of people worshipping the Lord. LOVE!

Garden bounty! This year we did raised beds with organic mushroom compost, and it has worked! We have had many failed attempts at gardening largely because we can't keep up with the weeds. This year has been awesome!

Tractor fun with Kaila. 

Wonderwoman superman? Frazier is wearing a leotard that Grandma made 30+ years ago for Aunt Melissa or Aunt Keesha. It's still intact and well-loved.

Dancing queen! We did school (at home) that day in this amazing outfit.