I just want to preface this by saying, I am truly amazed yet again through our cleft journey. Our speech day yesterday at the hospital was a true learning time for Brian and myself, and feel like we had a whole lot that we didn't know about in relation to Reid's speech. We knew that cleft kids can sometimes have quite a few issues with their speech, yes....but we had NO idea to the degree that this whole speech thing comes into play....here is a tidbit of what we took back with us from the appointment.
First of all, I want to say, I fell in love with the speech therapist right away. She was young, vibrant, excited to meet us and Reid, interacted with Reid from the minute she met him, and was willing to take her time with us...as much time as we needed. I was impressed. I was also impressed how she takes only the kids from Dr. Gosain (our craniofacial plastic surgeon) as her case load. She reports directly to our surgeon....and she is in charge of the cleft clinics speech program when we start that in another year or so. She went with Dr. Gosian to the yearly convention of craniofacial doctors last week and seems to be very up to date and involved with the current trends in speech therapy. I also like it that there is MUCH communication between her and our surgeon. To me, that is key. ***can I also say that MANY that were at the convention were so excited to meet her, because she works with Dr. Gosian. I knew that our surgeon was good..but I had no idea how good. I guess he is quite the commodity and known through the country as a leading craniofacial pediatric surgeon. AWESOME, isn't it????
Ok, let me get back on track here. One of the main things I learned was about the palate itself in cleft kids. I didn't know that there is a little hole basically in the back of their throat that they have to really work with especially in feeding and speaking. There are only 3 sounds...M, N, and the ing sound that does not use the back of the throat to make their sounds. All the other sounds in the alphabet use the back of the mouth. When you say a B...you should feel air coming out your mouth. That is the case for all those tricky consonants for cleft kids...those hard sounds. Well, in a cleft kiddo, the air that should come out their mouth when speaking instead comes out their nose when saying those hard sounds. Hence, making a nasal sound when they speak. I haven't really heard a nasal sound from Reid, but the therapist heard a trace of one with the G sound. She also said that this becomes more pronounced as kids are putting phrases and sentences together. Makes sense...more words being said...more air out the nose...more nasal sounding. Our surgeon does perform a surgery to help correct this nasal sound from about 3-7 years of age....and our speech therapist said that this is done in about 60-90 percent of all cleft kids who see our team. Interesting.
We do have some exercises to work with Reid to help re-direct his thinking to get air to come out his mouth more than his nose...which should be interesting. We are to line up cotton balls on a table and say words like, "Puppy" and watch the cotton balls move. Eventually, the goal is to have Reid move the cotton balls with his speech. We are to see our therapist 2 more times for some more testing in a few months (x-rays of the throat....using barium to see the movement of the vocal chords and palate movement when speaking...all kinds of things to do. Then, we will start clinics with our team, and she will work with us. Reid will also be evaluated by our Help Me Grow chapter speech team and will probably start services this summer locally.
Reid missed his morning nap due to our appointment time, which usually he can adjust to quite well. He actually fell asleep on Brian during the last part of our eval. That is not like him. Brian commented how warm he was....but Reid is always a furnace. We stopped to grab lunch on the way home, and Reid was cranky...but again, I figured it was because we had messed up his schedule. We got him home, and I really thought he felt warm. We took his temp....yep...over 102. I had no idea!!!! It just really came on him fast. So, through the night last night, he was up every hour just uncomfortable. I did look in his mouth and can see his 2 top incisors coming through. I am hoping they are coming in normally...but it is hard to see. So, with him being up and fevering all night, I am home yet, again today. My principal is going to be out to get me. It seems that this year I have missed so much with all the junk we have had and of course, the extended time I took for Reid's palate surgery in Oct. He seems to be feeling a bit better this morning, but still has a low grade temp. After he awakens from his nap, I will see how he seems..and make the call to head to the dr. or not. We'll see.
Well, off to get some laundry done while I am home. Better use the most of my time here. Oh, and for any of you cleft families...have you ever heard of this surgery that I spoke of for the nasal sounding speech??? It was new to me...and just wondered if it was on anyone else's agenda for their child anytime??? Thanks to all....and picture updates when the big man is feeling better!
Our site is here to show our daily adventures with our 6 year old daughter and our 3 year old son. We are glad you are here! Welcome!
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Hello, and welcome to my page! I am so glad you are here. I am going to try and show you the average life of a 5 year old from my perspective. Mommy and Daddy will help me along the way if I get stuck.
Let me first introduce my family to you. I am Ellie. I am a 6 year old. I live in Ohio with my Mommy, Daddy, little brother Reid, and dog, Sophie. My mommy is a teacher. She teaches nine and ten year olds and loves it. She has been teaching for twelve years. My daddy works with computers. He works hard everyday.
We all love spending time together. I have wonderful grandparents and a terrific extended family. I am a very lucky girl. Thank you for visiting my page. Write to me any time. I love getting mail!!!
Many blessing to you all.
Love,
Little Ski (Ellie)
Let me first introduce my family to you. I am Ellie. I am a 6 year old. I live in Ohio with my Mommy, Daddy, little brother Reid, and dog, Sophie. My mommy is a teacher. She teaches nine and ten year olds and loves it. She has been teaching for twelve years. My daddy works with computers. He works hard everyday.
We all love spending time together. I have wonderful grandparents and a terrific extended family. I am a very lucky girl. Thank you for visiting my page. Write to me any time. I love getting mail!!!
Many blessing to you all.
Love,
Little Ski (Ellie)
3 comments:
That sounds like a great appointment! Thanks for the nice comment today...it was just what I needed today! I would love to get together soon!
Yes, I have heard of that surgery before. We were told that Drew would have to be older so they could really analyze his speech b/c sometimes everything structurally is OK but he may just not have figured out how to use it yet. So sometimes therapy can teach them how to use their new palate and sometimes another surgery is required. Just what I'm sure you wanted to hear ... another potential surgery! That is why the "So, is Drew done with his surgeries now?" question is so tricky to answer!!
Even though Drew has a really nice speech therapist that comes to work with him twice a week and we have the therapist that we see at team, I decided to get a little more proactive, so I ordered a book from Amazon this week about speech for cleft kids. I'll let you know if it was worth the $60+ I spent on it-ha!
Wow, that was all news to me. Aidan said his first "b" sound (baba) in front of the speech therapist this week and we were ALL shocked. I'm just waiting to hear a really good "Mama" when he's not crying or upset!
So interesting to hear about the nasal sound. Makes sense! can't wait to hear about the cotton ball trick!
We're not seeing a speech therapist through Children's... ours is through the school district. I wonder how they make that decision? Anyway, keep us updated!
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