Yes, that’s Emily poking out from behind that huge slice of watermelon. It was the first time she tried it. She’s pretty resistent to anything remotely resembling fruit, something we feel is left over from her pre-palate surgery days when the texture of fruit – or perhaps the acidity – really bothered her.

I’m going to resist the urge to wax poetic about our lazy, long Memorial Day weekend and focus on a topic actually related to the subject of this blog – namely cleft lip and palate. Team care is a fact of life for most of us with cleft-affected children. I feel extremely lucky to live within 100 miles of New York University’s Institute of Reconstructive Plastic Surgery where, in my humble opinion, THE best cleft lip and palate team is located.

But, contrary to where you may think this is leading, I’m not going to gush about my daughter’s team or urge you to bring your child to NYU or even use presurgical molding for your baby’s treatment. This entire website is a testament to my gratitude to NYU and my happiness with Emily’s outcome.

I mean, look at my bunny…

Rather, I want to take the opportunity to say that just because I love my team and just because NAM was right for Emily, it doesn’t mean either will be right for your child or your situation. My (unsolicited) advice to new parents is do some research and use your OWN instincts to select a team! Every situation is unique. Every baby is unique. Different families can handle different burdens…well…differently. I think it is absolutely important to keep abreast of new technologies in cleft repair and research the top teams in your area (and beyond, if this is possible for you) – but I don’t think anyone should make decisions based on the following:

1. A photo of someone else’s child – You don’t know what was involved in the cleft repair, the severity of the cleft, or how the photo was even taken. You should not assume your child will get the same outcome, even if the photo is an accurate representation of the child, period.
2. Strong advocation of a team by any ONE person or family – particularly if this person is a complete stranger to you.
3. Guilt or pressure. I don’t think we mean to make other parents feel guilty if they ultimately choose another treatment approach then we did, but again – we all love our teams and sometimes we do not realize how much pressure we put on new parents by pushing one form of treatment or another.

I do advocate team care, but beyond that I think the treatment decision is a very personal one that is up to the parents who need not be apologetic or concerned that they are harming their child by not jumping in with both feet when someone else says “boo.”

I’ll leave you with another picture of my bunny, whose smile is just perfect as far as I’m concerned.

Emily went to the doctor twice last week. On Monday I took her in because she had a bad cough and she also had her 2-year-old well child doctor’s visit on Wednesday. She threw up and was very ill on Saturday, then she had a bad cough on Sunday. So we took her Monday and they weighed her naked self on the baby scale (25.7 pounds). Thank goodness too, because she wouldn’t get on the big-kid scale for her visit on Wednesday.

For both visits, she started singing her ABCs the minute she saw the doctor (that’s my girl!) and was very talkative in general. She did very well in terms of meeting all her milestones. She did not cooperate when it was time to look in her ears and check her tubes. We have to bring her to an ENT – it’s just impossible for the pediatrician to do it. We’re working on getting the paperwork for that. It will put my mind at ease because she was very congested with this latest cold and I know that can actually displace the tubes.

Two years old already? Where does the time go?

Emily and Ana celebrated their birthdays together last Saturday and I’m happy to say that the party was a big success. They played nonstop all day and got lots of presents and hugs. The above picture is from Mother’s Day – Emily is poking her head through a raccoon sign at a tiny local zoo which we took her to with Ana and another toddler, Josie. Josie is my friend Stacie’s daughter and they traveled all the way from Maryland (5 hours!) for the party.

Josie and Emily stare at what I think is a peacock. Josie is one day younger than Emily, but look at all that hair!

And speaking of hair, Emily’s is looking very wispy and cute here. She’s outside chasing bubbles, her absolute favorite past time. I think she’s obsessed with bubbles. We’ve gone through gallons of them in the past couple of weeks and invested in some pretty heavy duty bubble blowers because manual bubble production (e.g., me blowing bubbles) cannot keep up with Emily’s demand. Plus it was making me light headed.

Another shot from the “bubble series.” You can really see how Emily’s upper lip is very flat in this picture and her lower lip sort of juts out a bit. This area of her face and also her nose seem to have changed a lot over the past month or so. I think she’s going through a growth spurt (she’s suddenly up a shoe size). I worry about how her face is growing and the fact that her scars seem more pronounced, as does the flatness of her upper lip. I know that orthodontia will change this a lot since it will bring her front teeth forward. Still, I worry.

Emily is morphing from toddler to kid with each passing day. She’s communicating more than ever, although she’s still not what I would call a talkative child (in the “we can understand what she’s saying” sense). She is getting clearer with a lot of things though and she’s making direct requests. She asks for t.v. shows she likes by name (Backyardigans is her favorite), loves bubbles (BUBBLES!) and today when she heard Jim trimming the hedges ouside she asked me “what’s that?” I’ll often talk to her just like I do to Ana just to see how much she understands – and it’s always a lot. This morning I said, “do you want to go for a ride in the car” and she nodded and got her shoes.

Emily had her annual cleft conference on 4/26. She’ll be seen every year by the team at NYU until she’s an adult. A conference is basically a room full of specialists – plastic surgeon, orthodontist, speech/language pathologist, ENT, pediatric nurse practioner and a handful of students. She did very well and was able to demonstrate her palate works just fine, as the above picture demonstrates (she’s drinking from a sippy cup with full suction). She was able to make p, b, d and sh sounds without any trouble. She walked into the room full of white-coated people and said, “hi!” at the top of her lungs, fully disarming everyone in the room. We were very proud of her.

Emily won’t need surgery for a few years. Her next surgery may be at the age of 5 or so and it’ll be to correct the tip of her nose which is wide. This is typical with a bilateral cleft. I mean I think it’s perfect, but we’ll wait and see what Emily wants when the time comes. She also has a 60% chance of having a bone graft to repair her gums when she’s around 8. That seems like a long way off right now. More immediately, she’ll start with orthodontic head gear at some point in the next year or two. She’ll also need a speech evaluation in 6-8 months. We can rest easy for the time being and continue to enjoy being surgery free (thank goodness!)