first CLP clinic

Last week, we went up to Burlington to attend a clinic sponsored by the State of VT, focused on children with special needs, in this case, kids with cleft lip and palate. Purpose was to meet in one room Dalia's team who will oversee her care, surgery, speech therapy, orthodontia, bone grafts etc. from now until she is all "growed up."

We feel very fortunate to have this opportunity. My insurance paid for it; but if we didn't have insurance, the State would cover it.

Audiologist checked her hearing -- below normal. Has fluid in her ears, no surprise as she pulls on them. Soon will see ENT, and will likely do Tubes in her ears when she has her next surgery on July 12.

Dental Hygenist - give her water from a cup, stay away from sippy cups (which is fine as she cannot suck through the top... yet) and avoid juice as much as possible, try to limit her bottle and do not give her her bottle in the crib. Less liquid = more food. We have been doing a "good job" brushing her teeth, and her teeth look really good!!

Plastic and reconstructive surgeon, who repaired her lip and hard palate 3/29. He is in charge right now and will be, along with the Speech Pathologist, for the next several years. Next surgery in July will be to close her soft palate, put tubes in her ears, and -- the surgeon told us after he looked at her -- repair her "scar" and give her a little more lip to her lip. She still has a tiny space on the left side of her mouth.

She will have speech therapy. She is elligible for state services, which ironically are facilitated through at the Parent Child Center, at which I am on the Board, and where she will go to Day Care in September.

Oral surgeon. He'll step in at age 7 or 8 to start bone grafts and implants and other fun stuff.

Genetic counselor. Since we are not her bio parents... genetic counseling will be more to check if she is likely to pass along CLP. Later, when she is much older.

Social Worker -. Spoke to us separately to get our feedback and hear how things have been going. Relayed that it's a lot, along with her treatment for Tuberculosis (will start 90-day course of medicine), blood tests for screening for communicable diseases, etc -- just a lot of appointments and follow up and payments and a lot for HER.

We will go to this Clinic 1-2 times each year and/or as needed (i.e. will meet with the Speech Pathologist again in 6 months).

At one point, Tal sat Dalia on his lap on a chair that leans way back. All 6 or so experts peered into her one tiny mouth. They were very impressed with her skills at reaching over several tiny toys without knocking them down to grab the one she wanted.

Her language is growing every day! She has perfected her name for our dog, Charley, to "Cha Yee"-- the ch sound is like the Hebrew sound in "Chai". She has learned Up and down, in and out, boom, boggle = bottle.

I was just giving Dalia her boggle when Charley walked in the room. She yelled, "Cha Yee! Yeow!" Yeow is the sound she makes for any animal, but it is most closely related to "meow."

She likes ink drawings (Beatles "Revolver", Shins "Wincing the Night Away.") She LOVES people.

Dalia was given a welcome shower/party last week by our dear friends. Again, we are SO fortunate. She played and laughed the whole time. When almost everyone had left, and only a few of us were there sitting on the couch, she came waddling out of the kitchen, with her body bent forward, her head sticking out forward, butt back, eyes squinted in happy silliness, with an Obama magnet in her mouth. So much fun, she is!