Wednesday, April 22, 2009

Two More Appointments Down

Steve has been a busy Daddy this week and I think that all of Sasha's pre-surgery appointments are now done!

Yesterday was Sasha's assessment at with the speech therapist. Steve said that he really liked the therapist, especially because she was clearly very familiar with the specific challenges of cleft palate kids. I was hoping for some kind of rating (the perfectionist in me comes out!) so I could say that Sasha rated a 258 (not sure what that would be out of, it just sounds like a nice number), but apparently this therapist isn't going to appease my need to be graded. (Lisa Simpson: Look at me! Grade me! Evaluate and rank me! I'm good, good, good and oh so smart! [drops to her knees] Grade meeeeee!!)

The speech therapist confirmed our belief that Sasha's comprehension is progressing well. She understands simple commands and sentences and responds appropriately. The therapist didn't seem too worried about Sasha's limited vocabulary, especially since she can't physically make a lot of sounds yet. Once Sasha has fully healed (around 3 months after surgery), we'll go back to the therapist and start work in earnest. Until then the therapist gave us some materials and ideas to work on but we're not supposed to push Sash to make certain "plosive" consonant sounds (like "t" or "k") until then because the pressure apparently could mess with the sutures. Crazy, eh?

Then today Sasha met with the Ear, Nose, and Throat specialist who confirmed our suspicions that Sasha should have ear tubes. Sasha's ears aren't draining correctly, which is pretty common with her condition, and can interfere with her hearing. We haven't been able to get a really good hearing test done with Sasha, but the results of a test that they did at Primary Children's where a machine blows a puff of air into her ear to measure how the middle ear reacts was enough to convince the surgeon that she should have tubes put in. The procedure is called a tympanostomy tube surgery and you can read about it here.

Apparently Sasha's ears are draining so poorly that - get this - the doc could tell that she drinks a lot of milk because there's milk in her middle ear! Ick! Yeah, that was all the persuading I needed to go for the tubes.

They'll insert the tubes at the same time as Sasha's cleft surgery - May 13th is going to be one big day for our little girl! We've been getting a lot of great advice about the surgery fro other parents and it sounds like the first few days of recovery are going to be really hard. She'll probably stay in the hospital for a day or two until she starts drinking (in our craniofacial doctor's words, they could release her, but we'd just be back in the hospital the next day with a dehydrated kid because she's too miserable to drink) and then most families say that their kids are pretty out of it and clingy for up to a week. Depending on what our doctor thinks, she may have to wear arm restraints for up to a month to keep her fingers out of her mouth, which sounds miserable to me but certainly better than messed up stitches. So we're trying to prepare ourselves for a pretty challenging month while hoping for the best from our amazingly resilient little girl. We know this is the right thing to do... but it's going to be hard!


Lou Ann said...

It sounds like you're in for a heck of a month but at least Sasha will be on the road to being able to enjoy life to it's fullest. Not that she doesn't seem to be having a ball now since she clearly is.

I know nothing about the clef palette surgery but I can tell you the ear tubes are a breeze. Lexie had hers put in last Aug and it was literally a 5 minute surgery from when the nurse took her away to when the surgeon came out to say it all went fine. And the difference in her hearing and speech has been amazing. That was when I realized how much she WASN'T hearing. So don't worry about that part of her surgery. Lexie was up and playing by the afternoon so Sasha probably won't even know something was done to her ears. Other than the fact that she can actually hear those sounds you've been making to her.

My prayers are with you all for a safe surgery and speedy recovery for your sweet Kazakh Princess.

Lou Ann & Lexie too

sandyamstar said...

Wow! That's a lot going on for one little girl. I'm glad they can do both of the surgeries at once. It sounds like the dr. is smart to have her stay a few days in the hospital. Best of luck and we'll say lots of prayers! (Abby has decided that every little girl in a picture is Sasha and she gets in the nightly "God Blesses" quite a bit!)

Jennifer said...

First of all, I adore you! I truly hope to meet you in person some day. Your comment about grading had me rolling!

Now as for the serious stuff, yikes!! I don't even like putting my dogs in those head collar things when they have surgery. I can not even begin to imagine the emotional pain of having to restrain my child for a full month. Egads! That sounds terrible.

However, I can't WAIT to see pictures of little Sasha in June. She'll have adjusted to the tubes, healed from the surgery, and I can only bet that her expressions will be amazingly bright! (Which is hard to envision as she is already so bright!)

Thanks for all the info. This is so very interesting, and I want to thank you for being open about it.

The Fox Den said...

Wow! Things are coming along. She'll be able to eat without problem, chat with little friends and yell at her brothers in no time! It's hard to see them "go under" though. I'll be praying for you all.

Al and Lyndsie said...

I'm amazed at how quickly you've taken care of getting Sasha through the steps to have her surgery! I'm praying for you guys. I'm sure she will feel so much better and even more of her world will be opened up once its all over. *hugs*

Karla said...

Wow! Good luck!

Anonymous said...

Sasha's cousin, Jack, had tubes done, and did very well.
It is always harder on the parents than the kids when a child's health is a problem. Sasha doesn't know to be anxious about the surgery and will take it a day at a time...and probably won't remember any of it. Mom and Dad will be a wonderful source of comfort for her. Prayers all the way around for you guys, Love, Gramma

The Life of Four Beckstrom's! said...

Hey Jamie and Steve let us know if there is anything we can do to help. I live so close and I stay home so if Ben wants to play or you need help getting the kids to and form school, or even dinner please let us know. Zoe had a herniated umbilical surgery when she was about 9 months and I can tell you the hardest part was coming out of the anesthetic she just cried and cried which is common for kids but they did not tell me that Good luck .Please call if you need anything. The Beckstrom's

Jstar said...

Thanks, Bekstroms, we will definitely let you know!


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