They just seem neverending, don't they? ;)
Emily's surgery was this morning. The ENT put in ear tubes which went great. No complications and nothing unexpected.
The plastic surgeon for the cleft palate team also took a closer look at her palate while she was under anesthesia.
Unfortunately, the news there is not so good.
Normally when a child is born with a cleft palate, the tissue that would form the palate does not fuse together in the womb. The tissue is still present, and it is a relatively simple surgery to sew the tissue together to close the palate after birth (obviously, depending on the situation it can be a more or less complicated surgery). In Emily's case, a palate repair was attempted in Ukraine and it failed. We don't have any more information than that, but as a result she has very little tissue left on her palate and most of what is remaining is scar tissue. The plastic surgeon was able to get some great pictures of her palate which he is going to send to a colleague for a second opinion on options for her, but he was not optimistic.
Our options pretty much stand as they did before, with the added option of not fixing Emily's palate at all--and with the understanding that there is a decent chance that any surgical repair would fail again. In the surgeon's words, her speech will then remain "unintelligible" for the rest of her life. We are still waiting for an official opinion from the surgeon as to what option he thinks will work best for her, but we won't be having surgery again anytime soon as far as we can tell. We will go ahead and start speech with her at the end of this month to give her the best ability possible to communicate with what she has. In addition, we will continue teaching her sign language (which she loves and uses to "talk" to herself!) to give her as many avenues of communication as possible.
Good thing we all sign around here. Guess God had a good plan for putting her in a family with a former interpreter. ;)
The boys are heading to the dentist this afternoon. Any votes for whether or not someone will need dental surgery?? LOL
Thursday, July 02, 2009
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12 comments:
I have never commented before, but as a fellow adoptive mom I have enjoyed your blog. I absolutely agree with you about God putting Emily in the right family. What a complete blessing that you were a former interpreter and how awesome it will be for her to be able to communicate with her family in some form. How great indeed.
I must have missed this before... but, I didn't realize that it would effect her speech. Good that you guys are on top of the sign language!
I'm a former interpreter myself. (had to quit 4 years ago when my daughter went to home-bound school services, and I let my certifications go.) That said, since Emily is hearing, have you thought about using Cued speech with her? For many years I was totally against it, because in interpreter training we'd been taught that it was "bad. It's not ASL. Blech. Stay away!" Yeah, well fast forward a few years and I had to learning it for a student I was working with. Those who tell you to stay away from it do so because they DON'T KNOW WHAT IT IS!!! They don't understand the concept or the theor behind it. I only knew what I'd been told by those in the deaf community. Shame on me for not looking further. Anyway, unlike ASL that has no connection to English, or written language, CS has a 100% correlation to sounds and written language. It is EASY to learn, and you can learn the entire system in one weekend. You won't be at the rate of speech at that time, but you'll be able to cue any word you can say. Anyway, just thought I'd throw that in there, especially since Emily is hearing. My daughter Angela has Down syndrome, and I didn't learn to cue until she was 7. WOW...do I wish I'd known this when she was a toddler! Reading and writing come so much easier when you've been cuing vs. signing! We had a lot of catch-up work to do.
I love seeing all the progress your children have made. As a mother of 4 boys from Ukraine, you are doing an amazing job with them! I am encouraged in broadening my horizons as my husband and I are contemplating our next adoption adventure.
Stefanie
Hi, I don't usually comment, but I'm hopping over from the Reece's Rainbow group to comment. It's good that you are getting a second opinion for her palate repair; I was just talking to a professor who specializes in clefts, and he was mentioning that he had only seen a handful of clefts that were unable to be repaired (including those that were second repairs). Is there a reason she would be unable to use a prosthesis?
Leah, I am very familiar with CS. I am most definitely not fluent in it as it has been many years since I studied it! :D My biggest concern with cued speech (in general) is the lack of people who understand it. For kids with hearing impairments, it can be very difficult to find CS interpreters which becomes more critical going into high school and college.
In our case, that doesn't matter since Emily's hearing is good. But cued speech will not help her learn/speak the sounds, as her issue is a physical inability to produce them. I do think CS can be very useful for kids who are auditory/oral learners (even deaf kids!).
OT, there is also a "new" system called visual phonics which is similar to CS but is used for hearing kids to help with speech therapy. It gives visual cues (similar to CS) for phonics sounds and blends. We looked into that for our oldest son, Dima, but decided that with his motor planning issues it would not be the best choice for him.
Brianne, the surgeon felt that they could do a repair, but with her already having one failed repair and us not knowing the cause of that failure that she has a higher potential for a second repair to fail. The second opinion he is currently looking into is from a doctor who makes palate prosthetics (i.e., retainers) that would give her a usable palate. It's just not an ideal solution at her age since she will grow so quickly, and he isn't sure she has the bone structure necessary to support a prosthesis.
What a week you have had!!!! Let me know if you need anything.
Your'e right, it won't help her make the sounds verbally, but she'd be making them manually...which will help her with reading and writing, sounding out words, etc. We use it quite a bit for students who have dyslexia. I'm also very familiar with Visual Phonics (it's been around about 10 years) the only problem with it is it's used for sounds in isolation only. Putting it together to make whole words is very labor intensive, and sentences, phrases, etc are a PITA. LOL PROMPT is another system (maybe 5 years old) that is more of a sensory-motor approach and THAT, combined with CS, seems to be a great combination! I taught a CS workshop on the east cost a few years ago and there were several SLP's who had just learned PROMPT as well, and were anxious to put the two together! The CS community has grown exponentially, and with the new CLT training and certification programs that growth continues. I worked in a district who adopted CS in ALL elementary grades, and were using it with all students in Kindergarten & 1st grade instead of doing zoo phonics, and they teachers LOVED it!
My daughter's cleft was just a whole in her mouth from what I remember. When they did her surgery, they just trimmed tissue in a half circle behind her gum line, folded it over and sewed it. I don't know much about different types of clefts, but I know she had Pierre-Roban Syndrome. I was wondering if they have other terms for other cleft. I forgotten what I used to know. Does her cleft effect her gum? I'm not sure if you've posted detail about it in the past.
Emily had a full cleft lip/palate. Her lip was repaired in Ukraine (they did a great job!) but the palate surgery failed (we don't have any info on that so no idea as to why it failed). Her open palate is currently about a 2cm by 2.5cm hole. Her cleft lip/palate are what I would call a "common" cleft lip/palate, in that she doesn't have any other diagnoses other than her lip and palate not closing within the womb.
I'm hoping to get some good pictures of her teeth and palate to post on here, but it's hard to keep a 3yo still with her mouth open! LOL
Ryan and I are thinking of you guys and praying for Emily. It is so amazing that God placed her with you.
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