today our prayers were answered. since mya was a few weeks old, she has had cafe au lait spots on her back and under her left arm. on their own, they are nothing, but they are one symptom of a disease called NF. this is a major disease--cysts form, learning disabilities, vision difficulties, etc. our pediatrician has never been very concerned as mya is doing well and there isn't anything that can be done at this point regardless if a diagnosis is made or not. she did recommend a referral to a pediatric dermatologist to get an initial check, so the monitoring process can begin. after a long six month wait, that appointment was today. dr. burnett was awesome. she was patient, answering each and every question, explaining Mya's birthmarks (which are considered 'segmented cafe au lait macule'), the connection to NF and one other potential disease (mccune albright syndrome). currently, mya shows no signs of either disease and is exhibiting normal growth and development. she basically ruled out both diseases. we will continue to monitor for changes and take her back for a check up in 2 years. if other cafe au laits appear, she will go back in 1 year. today we are optimistic, thankful and truly blessed that our prayers have been answered.
So, we are still roughing it in our amazingly, wonderfully fabulous, new house. That means, air mattresses in our living room. Fun. The girls love it, Chris and I not so much ;) Anyway, the close proximity means Chris and I get to eavesdrop on some very tender moments. They seriously bring tears to my eyes. How did we get so lucky to have them as our children??? Here's one example. Claire--"Mya, can we snuggle?" Mya--"sure." Claire--"don't let go." Mya--"No, I'll just wait until you are sleeping." Claire--"No, you wait until the middle of the night." Mya--"Okay, I'll wait until the middle of the night." Then we hear lips smacking. So cute. I won't share the meltdown that occured moments before this sweetness ;) Life isn't always rosey, now is it? Ha! In other news..we get internet today and our furniture/things tomorrow! That means 1 more night of "roughing it!" Yippee!
Comments
Love ya,
J
Lisa
She is so cute, she has hair. From here, it looks like there may be a red tint to it.
You have such adorable children...