Friday, January 22, 2010

a day in the life...speech therapy

Just in case you were wondering or if you were contemplating adopting a child born with a cleft lip and palate I thought I would let you follow along on a typical day.

Some quick background info:

Grace is 3, she was born with a severe cleft lip and palate. Her lip was repaired in China. Her palate was repaired once we were home along with a bone graft, nasal repair and ear tubes. The tubes fell out after a year and we had them redone January 4 of this year. She has mild to moderate hearing loss in her right ear with good hearing in her left. This time her right ear was filled with fluid and about to rupture. So I am thankful we got in when we did.

We start out by getting the big kids ready and off to school by 8am. Then I feed the Little's and get them dressed. If I am lucky I get to myself. LOL

We head out to the medical building for a surgery recheck and hearing test/evaluation. Normally this isn't the case but today you are lucky, we had to go here first.

The girls settle in and we are called back. Sorry I don't have pictures of the booth but they were a little weirded out by the fact that I wanted to take pictures....maybe next time.

Hope sets herself up at the speech therapist's desk and Grace and I head into the sound proof booth for some hearing tests. She sits on my lap and we wait. They stick tiny little plastic ear plugs with holes into her ears and test for sound waves. We wait, she readjusts, we wait some more, she tries one ear and then the other. Nothing. She assures me this is normal because of the tubes. I am not convinced but ok, I'll go with it. Next comes the sounds test. Grace will sit on my lap while the therapist has toys make different sounds in different areas of the booth. The idea is to get her to respond in some way. She will also sing and talk in order to get Grace to respond.

We do the left ear first and then start doing different sounds in different areas. The left ear responds, she will turn her head each and every time. The right ear....well with very loud noises she will respond, sometimes. The softer noises or when the therapist sings softly, nothing. Not one flinch, just nothing.

Do you know how sad it is to hear something and not be able to move and just have to sit and watch while your child does nothing, realizing she can't hear it. I tell you it's very hard. The thought of my child not being able to hear is scary. She compensates for it. I see little tilts of her head or she moves to another side so she can hear better from her left ear. But, it is still hard.

The therapist then goes over the results with me. She has mild to moderate loss in her right but good sound in the left. No surprises there. The tubes are both wide open and working. Now onto the doctor. He checks everything out and says great, we'll see you in 3-4 mths for a recheck and another hearing test. They keep trying to give me hope and say maybe when she is older, it will get better. They just need to give her more time. I hope so.

It's about 11 am now and our day is just getting started. We head to the fabric store for a quick minute. (yeah right) and then off to the girls' favorite noodle store to grab something to take to the elementary school.

We have lunch with Jake and his class. The girls love doing this and I am hoping it will allow Hope to get used to the school and following directions. Maybe this will help ease her into Kindergarten without issue. Next we head off to Grace's speech. She gets one on one direction from a speech therapist at the school three days a week. She does go into the room by herself. I wasn't sure at first if she would. I sat with her the first couple of times but she did get distracted and wanted to give up with me there. Now I make sure she knows Hope and I will be sitting right outside the room waiting for her. After about 45 minutes she is finished and I talk to the therapist for a progress report. She has some concerns but is confident that Grace can relearn some things. She drops the first and last consonant of every sound. She has a very difficult time with the letters B, P K, get the idea any hard sound. I have yet to tell them that the hearing in her right ear may be permanently gone. I hesitate to share this as it may affect her eligibility for getting speech. And of course we just aren't sure yet...
Grace does have homework for the weekend. We have a bunch of words and sounds to work on. Usually we practice before going to bed. She has shown some improvement but it will be a long road. I fully expect her to be in speech throughout her elementary years.
Having a child born with a cleft lip and palate is not easy. There will be life long things you have to do. But, I love this girl like nothing else. She is a light. I love that she is so determined and so strong in knowing who she is. (yes, at three) She loves life is a joy to be around.


Courtney said...

Your daughters are beautiful! I can't wait to see you get your LOA for precious Rachel. I hope it comes quickly!
Courtney (MCK on RQ)

Courtney said...

Your little girls are precious!!! :) I really enjoyed looking through your website! I will eagerly follow your blog until you bring Rachel home!