Summertime summertime sum sum summertime. It’s here. Old Man Winter finally accepted defeat and the sun is shining like it means it. We’ve been busy reclaiming our backyard. A year after we moved in, the lot behind us sold and they built a house, taking down every last tree. So we moved our lives out front. The trees we planted now hide our yard a bit, so we’re moving on back. I have begged for a pool for years and this Mother’s Day, that what I got. We’ve made into our little sanctuary. We have the pool with some decking and we’re redoing the back patio. I’m loving it. The kids are outside more, everyone is happy and tired by the end of the day. It’s been a lot of work, and there’s some more to go, but we’re having a blast already!
We hit off the season with a celebration. We celebrated that one year anniversary of Carlee’s adoption. We didn’t do much on her actual adoption day, because she was so sick. This year my girl was the center of attention and even got to eat some s’mores. We had a s’mores party! Our dear friends came in droves, we had about 70 people here to love on our girl! I have to say, it was a hit!
I have a friend named Rachael. A kindred sister of sorts. Until recently, I’ve never met her in real life. She’s moved to my hometown after I graduated. When I friend requested her, I honestly thought she was someone else with the last name I remembered. I’m so thankful that I made that mistake. Rachael is a mama to many. She has two sons that share my sons names. She and I are on the opposite sides of adoption, her being a loving birth mother and me being an adoptive mother. We’ve bonded over a lot. The most recent and most tragic, is the illness of her daughter. Her daughter shares many of the issues that Carlee has. However, her daughter is terminal. On August 27th, 2012, Jaeda Celeste was diagnosed with Metachromatic Leukodystrophy or MLD. MLD is degeneration in the white matter of the brain and Central Nervous System (CNS) which has a color on staining that should not be there. It genetic disorder that affects nerves, muscles, organs, and behavior. It slowly gets worse over time. And is SUCKS. Royally. (you can read more about Jaeda on her facebook page https://www.facebook.com/blessings4jaeda)
Jaeda went to a birthday party that included a dance. She decided she wanted to go to prom. Her angels came from everywhere to make this happen for her. She rode to prom in an awesome vintage car. She had her prom date. The cafeteria was set up just beautifully. And she entered in a beautiful pink prom dress. Jaeda may not make it to her real prom, this was her dream and strangers and friends and family made it happen. And it was magical. So magical, in fact, that Tinkerbell herself crowned Jaeda prom queen. In all the sadness that Rachael has to endure to watch her daughter slip away, she got this one night to see her shine and radiate in happiness. We pray and pray for a miracle for Jaeda, we don’t give in the diagnosis or what “they” say. And in the meantime, her family makes sure she has all her dreams come true. They are amazing.
Oh, how I hate to not blog. We’ve been busy busy bees around here. We have a new placement, a sweet baby boy nicknamed Bluebird. I wish I could show you his face, he’s adorable. He’s 15 months and walking and playing and generally being a toddler with the face of a baby. His doctor appointments and visitation schedule have finally settled down, but we were hopping there for awhile.
I have some great news about Carlee. However, it started out as really bad news. I got her out of bed on Thursday morning and her onesie had blood on it. I freaked out and when I touched her, I realized her feeding tube was gone. Thankfully with God’s awesome timing, my husband was home from work that day. After waiting around for the answering service to call back, we learned we’d have to take her to the Children’s Hospital for a replacement. The hospital is about an hour away plus traffic. Since her daddy was home he took her. After the waiting in the er for a temporary tube, they took her to radiation. There they tried for over an hour to put her GJ tube back in. They could not get the tubing through the lining of her stomach. They had to stop, so they put in a Mickey button and scheduled us for the next morning. Well, we’ve been working to get her to a Mickey button. After a few calls, I got in contact with her GI doctor who gave us the all clear to keep the Mickey button. This is a HUGE deal. The GJ has a base on it about 2 inches in diameter and an external tube about 9 inches long. This tube has been the bane of our existence. Carlee would pull it and tug it and chew it and squeeze it. Many mornings we awoke to her covered in the contents of her stomach because she’d open the tube in the night. As for superficial reasons, she always had to wear a gauze netting or a onesie over the tube to keep it in place. Oh, and bath time was a nightmare because she would pull on the tube or it would float. The Mickey button is about 1.5 inches long and .5 inches wide. NO TUBE. To feed her, we put the tube into the Mickey button, feed her, and remove the tube. It’s been just three days and we’ve all noticed a difference in the ease of her care. Carlee herself seems so much happier, nothing tugging on her and causing her pain. We are thrilled with this turn of events.
We recently had some family pictures done as well, sweet Bluebird had to be covered up, but you can get the gist of the ever growing family.