SIckle Cell Info

I know that some of my readers have questioned a statement made in my previous post about Sickle Cell being a curable disease here in the States. I should have clarified that statement in that post. I will do so now.

We did not step into this endeavor blindly or going on "my cousin's mother's 3rd aunt's boyfriend has it....." kind of info. We researched extensively: medical journals, consultations with doctors, etc. and found the same information. Sickle Cell is absolutely curable and there are 2 avenues that can be explored. Let me quote directly from the University of Maryland Medical Center: "the only true cure for sickle cell disease is bone marrow or stem cell transplantation. The bone marrow nurtures stem cells, which are early cells that mature into red and white blood cells and platelets. By destroying the sickle cell patient's diseased bone marrow and stem cells and transplanting healthy bone marrow from a genetically-matched donor, normal hemoglobin may be produced."

Now, a stem cell blood transfusion is obviously the more difficult option to work out. Though we don't have her stem cells or even a siblings, there is the possibility to find a close enough match from donated stem cells. This would obviously be the less painful route as this can be handled through a transfusion. The bone marrow transplant, on the other hand, can be quite risky because intense chemotherapy has to be done prior in order to facilitate the acceptance of the bone marrow. There is a new procedure however, that delivers a much less harsh, lower dose of chemo and is a lot less risky to the recipient. You can read about it here.

Once Saraphina comes to the States and can be evaluated by a doctor here, we will be able to come to a better conclusion about the severity of her particular case and whether or not these would be viable options for her. If you or a loved one has Sickle Cell, please research the options. Get educated. This disease does not have to cut lives short or painfully destroy each day you have. There are options and new treatments.

more cai-isms

overheard at the lunch table:

"my boogers are punching me in the nose!"

cai-isms

Poor Cai,

He tries so hard, but he trips himself up more often than not. His best quality is often his greatest downfall - his passion.

Today, he made an impassioned plea to be let off computer restriction.

"Everything to me is bad and good. My brain just won't listen to me." (Punches himself in the head a couple times out of frustration).

This is a typical day with Cai. Sometimes, he's so trapped inside himself and some days he's absolutely bonkers! He loves so deeply and so openly, and when the pendulum swings the other way,he has zero impulse control and that passion turns to angry outbursts.

Still trying to figure out how to best help him. For now, it gives way to priceless "cai-isms."

Hot Winter!

I know many of you who read this blog are shivering in your long johns right now and for that, I am sorry. Hopefully, pictures of our weekend at the beach, in near 90 degree weather will warm you up! Here's the scene: Jensen Beach, Florida. Ocean inlet with a park and fishing pier. Low tide. Early morning. Fiddler and horseshoe crabs. Dolphins. Yes, I said dolphins - playing and chasing their breakfast not too far off the end of the pier. Bar-B-Q. Afternoon fishing. Boys caught enough fish for dinner! Hazaa!

Our little girl....

Yeah, that's right, I said it. Let me tell you a story.

There is a little girl. A sweet little girl who desperately needs help. (And I'm such a sucker for situations that need fixing!) Her name is Saraphina and she has been in the same Haitian orpahange we adopted our 2 boys from, for 2 years now. Some of you may know, some of you may not know, but she was in the process of being adopted. That was until recently.

Recently, it was found out that she has Sickle Cell Anemia. For those of you unfamiliar, I will give a brief synopsis. Sickle Cell Anemia is a disease in which, basically, your blood cells are misshapen. While normal blood cells are round, squishy little things, Sickle Cell blood cells are shaped like crescents. This makes for very painful passage through the blood cells, bouts of "pain episodes" and a shortened life expectancy (about 40-50 years). Now, in America, this is both a very treatable and in fact, CURABLE, illness. In Haiti however, this can be quite fatal. Blood type/availability is not certain, nor is the affordability/availability of transportation to where blood is for a transfusion should a "pain episode" occur.

Long story short, she desperately needs to come to the States on a medical visa. Here she can get the treatment she needs and a chance to not only survive, but be cured. Here's where we come ito the story. Because of our involvement with her previous adoption process and many other issues that I won't get into here, we feel it our duty to step up and take responsibility for this little cast away. God has not yet said no and plans have been set in motion to get her here. We will be her host family while she is receiving treatment and she is likely to be here around the end of March if all goes well.

Honestly, after much deliberation and prayer, we've realized that it will likely be very hard to give her up to another family, both on us and her. So, we will likely begin the process of adopting her a few months after she gets here.

We don't even have a car that fits our whole family at this moment. Our truck got totaled and our awesomeness of a pastor is loaning us his station wagon. We don't have anything for a girl.....don't even know what to do with one of those! Point is, this is what we have been called to do. To obey - to step out - blerg, to leap out! And that's what we're doing. God will take care of the rest.

Just thought I'd give everyone a heads up so that when you start seeing random pics of a little girl in our house in a couple months, you won't be all like wtfrak? what just happened?

Cai-ism of the day

Cai blurts out randomness so often that its hard to catch or feature just one and I've been remiss. Lately, these random phrases have been captured on photo and I will share these with you now. If you've been following my 365 projeckt, these will be duplicates, but CaiCai nonetheless.

Today's Cai-ism, during his morning snuggle-cuddle: "Mommy, you're my best chef ever!" Who needs to compete in Top Chef? I just got the best accolades ever!



The other day, Cai came over with a heart magnet he got off the fridge, put it up to his eye and tapped it. "Mommy, I want love"
"I love Elijah milk!" For thos eof you who know, Cai had a friend named Elijah who drank Very Vanilla Silk. Every time they were over at our house, Cai would beg Aunt Dian for some of Elijah's milk. This turned into it forever being called "Elijah Milk."


No words needed. Enough said!

Bad Juju

Seriously, my juju must be off. In the last 2 weeks, I have broken my nose, gotten a really bad cold and burned the inside of my entire forearm. WTH? I mean, for reals? Now that all the swelling has gone down in my nose, you can feel a definite chip or dent on the right side of my upper bridge. Having a head cold has not helped the healing process as every time I have to blow my nose it feels like it rebreaks. There's a crunchy piece, near the dent that occasionally fills the dent and it still hurts like blerg whenever I touch that area.

Then, last night, well, let's just say, as a rule and warning, one should never cook whilst on cold medicine. I was making a delightful winter vegetable bisque to warm us on this blustery, wintery day. I transferred the soup to the blender, locked the lid down good and tight and pressed the low button. Except my drugged up fingers slipped off the low and pushed in the HIGH. Because I was holding the lid on, the scalding soup didn't shoot straight up, it shot straight out, onto my chest and the forearm of the arm holding the lid. Sunova OW! I ran it under cool water, for a couple minutes, but that wasn't working. Since Jeremy was still like an hour and a half from coming home and I was too nauseus form pain to drag myself and 4 children to the drugstore, I had to alternate between running it under cool water and holding cool, wet compresses on it. Finally, Jeremy came home with supplies and lemme tell you - BurnJel is the bomb! Numbed my arm to the point where it feels like how your lip feels when you get Novocaine! Awesome! It's still red and a little swollen this morning, but mch, much better.

If anyone has any ideas on how to get my juju back, I would really appreciate suggestions. Between broken noses and scalding soup (which turned out incredible, by the way), I don't know how much more I can take!