I can't believe this is our third visit to cleft clinic!
Here's Embree when she was born.For those of you who don't remember or never saw her as a baby.
Only three of her doc's were there today. Dr. Tableman her orthodontist, Dr. McGill her plastic surgeon, and the cleft teams dentist. (we don't see him, we go to a friend) I told them to " say Palate" when I snapped the picture. They all thought that was pretty funny.
As usual she cooperated VERY well. She amazes us. She is so brave.
She looks sad in this picture but she was totally calm.
We showed her the pictures of her face they keep in her file. Two shots of her at every surgery. She looked at them funny. She has seen her pre-op pictures many, many times. These pictures are just VERY close up. Later Sean and I were talking to her about her "boo, boo lip" We told her she was born with one, (she already knows this) how the doctors fixed her lip, and how pretty it is. I often ask to kiss her "pretty lip". Her bunny (see the picture above) has gone into every operation room she's been in, minus her first surgery at 7 weeks. When she goes to ANY doctors appointment she brings her.
Embree's attempt to take a picture of Sean and I.
Only three of her doc's were there today. Dr. Tableman her orthodontist, Dr. McGill her plastic surgeon, and the cleft teams dentist. (we don't see him, we go to a friend) I told them to " say Palate" when I snapped the picture. They all thought that was pretty funny.
As usual she cooperated VERY well. She amazes us. She is so brave.She looks sad in this picture but she was totally calm.
We showed her the pictures of her face they keep in her file. Two shots of her at every surgery. She looked at them funny. She has seen her pre-op pictures many, many times. These pictures are just VERY close up. Later Sean and I were talking to her about her "boo, boo lip" We told her she was born with one, (she already knows this) how the doctors fixed her lip, and how pretty it is. I often ask to kiss her "pretty lip". Her bunny (see the picture above) has gone into every operation room she's been in, minus her first surgery at 7 weeks. When she goes to ANY doctors appointment she brings her.
Embree's attempt to take a picture of Sean and I.
Kim (or "im") as Embree calls her.
This is Embree's speech pathologist. She usually see's her once a week. We've gone down to every other for reasons I will explain later. We LOVE her. She has been with us from the VERY being. She started out by helping us feed Embree. She's a Haberman (her special bottle) pro! I tell her she's our Social Worker too. I tell her everything regarding Embree's health care. She really has gone above and beyond for us. She knows EVERYTHING!
Sean and Embree playing with toys in the playroom.
Well, we were told Embree needs to have two surgery's. Double dang. Her speech is extremely nasal and just all together unintelligible (her PS's words) and is not improving, even with weekly speech therapy. (that's why we went down to every other week) She needs to have her adenoids out, then a p-flap. We are very stressed and concerned. Their is no ENT on our cleft team at this time so we have to find one who will work with our plastic surgeon. The p-flap brings with it two issues of concern: possible sleep apnea and frequent throat infections. Ugg, poor Bree. Well, I'm sick of talking about this. Lucky for us we belong to a great cleft group online. I'll be posting for help there. Embree is just a star! They love her. It's so nice to have people so happy to see her and make her cleft a *special* thing not a different thing about her! She entertained all the doc's with a song from Nemo the Musical one of our favorite shows at Disney World's Animal Kingdom. It was HILARIOUS. She belted it out!
This is Embree's speech pathologist. She usually see's her once a week. We've gone down to every other for reasons I will explain later. We LOVE her. She has been with us from the VERY being. She started out by helping us feed Embree. She's a Haberman (her special bottle) pro! I tell her she's our Social Worker too. I tell her everything regarding Embree's health care. She really has gone above and beyond for us. She knows EVERYTHING!
Sean and Embree playing with toys in the playroom.
Well, we were told Embree needs to have two surgery's. Double dang. Her speech is extremely nasal and just all together unintelligible (her PS's words) and is not improving, even with weekly speech therapy. (that's why we went down to every other week) She needs to have her adenoids out, then a p-flap. We are very stressed and concerned. Their is no ENT on our cleft team at this time so we have to find one who will work with our plastic surgeon. The p-flap brings with it two issues of concern: possible sleep apnea and frequent throat infections. Ugg, poor Bree. Well, I'm sick of talking about this. Lucky for us we belong to a great cleft group online. I'll be posting for help there. Embree is just a star! They love her. It's so nice to have people so happy to see her and make her cleft a *special* thing not a different thing about her! She entertained all the doc's with a song from Nemo the Musical one of our favorite shows at Disney World's Animal Kingdom. It was HILARIOUS. She belted it out!Embree had some dental work done on Tuesday.
She was a big girl and went all by herself. Her courage never ceases to amaze me!
She was a big girl and went all by herself. Her courage never ceases to amaze me!
9 comments:
What an amazing little girl!!!! Let us know when her surgeries are, we will be there for you (just like you have been for us!!)
Embree, you are such a brave little girl and we are so proud of you!!! Love you all!!
Sweet little Embree. I loved her newborn picture. I don't know if I've ever seen one of her before. All that dark hair is SO cute!
That's too bad about the surgeries. It looks like she will be quite the little trooper though.
She is awsome, and the bangs are really cute. Trew's nipple confusion is funny, he is getting so big. Next time we see eachother they will both probably be walking baby's. Crazy.
Hi,
I'm Plinio, Mark' Sanofsky friend from Brazil. Please, tell him to contact me. My email address is pliniomsan@gmail.com.
Thanks a lot.
i found your blog! i can't believe you have 4 kids... you have such a cute family!
Okay, first of all, that is amazing. I don't think I've seen a baby shot of Embree before. Her cleft was pretty wide and it looks so good now. Your PS is awesome.
Secondly, I'm so sorry to hear about the P-flap. I'm sure that is totally weighing on you. Man, I wish I could give some advice or something. Just know I'm here as a friend/support. Has she already had a revision on her soft palate? Both of my boys had to have that since there palate was too short, and that worked wonders. However, if you've already tried that option, I can see why p-flap might be the next step.
She is so adorable. How fun to have a cleft clinic documented with photos like that!
you should check dano's blog out... he's on his mission in Japan- it's the Danielsan link on our blog.
What a lovely little munchkin! She is too cute and SO brave.
Sean and Megan-- your family's progress astounds me and humbles me over and over. If I can be of any help on the resource side, let me know. The ORL faculty here in OKC are absolutely the best in the world, no exaggeration, both medically and as people, and I know would be happy to help, either directly, or by referral.
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