a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Friday, January 14, 2011

Update Hodge Podge

So, the word is out. This family is indeed growing. I'm nearing week 13 with a due date set for July 26th. This pregnancy has proven to be wildly different than my pregnancy with Oia. It's been physically and emotionally challenging but I'm able to manage one day at a time with the support of one patient husband and an extra push from a little girl who keeps her mommy moving.
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It's been a little over a month since Oia's first round of Botox injections to her right calf. Immediate results. Positive results. Trouble is the results were optimal for only about 3 weeks, foot almost flat and calf relaxed and easy to stretch. Ankle could be effortlessly stretched to neutral, or 90 degrees. It was 3 weeks of a good thing then with each passing day after that, Oia grew tighter and tighter until she ended up back to her pre-Botox level. Actually, the jury is still out if she is even tighter than pre-Botox. She is growing and bearing the majority of her weight on her left side which only invites tightness, therefor short calf muscles, and all sorts of asymmetrical issues. Oia hasn't even had her follow-up appointment with her doctor yet, who now won't even see what gains she did receive during the optimal 3 week period. I'm a little frustrated by the short lived results. It was a bit of a tease. We'll see what her doctor suggests at her next visit at the end of this month. I'm pretty open to hearing what options we have at this point (night splints, surgery, etc) but I'm pretty much set on not repeating Botox at this time. There are still too many unknowns in the world of Botox for my mommy heart to rest easy and for what.... just 3 weeks of a good stretch? Much to consider.
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I recently had a meeting with Oia's preschool speech therapist. As you know, Oia's language delay is significant. Current assessments show Oia's expressive language skills are approximately at the 20 month level, vocabulary of less than 50 words. Her ST also bounced the term Apraxia my way as something to think about. Clearly, Oia has enough stacked against her making language so difficult. For the longest time though, Rob and I have felt like Oia was "right there" and at any moment great words were on their way out of her sweet little mouth, which is why we've drug our feet on getting her any form of assistive technology. I feared AT would be a crutch. EI therapists had given her picture cards but the girl was so uninterested in them and frankly I thought they were a joke too. I realize these work for many people and have for many years but at the time, they were not right for us. Rob and I have had many discussions about getting her an iPad and thankfully, her ST has located one for us to use as a loaner. It will have several apps to explore and I have hope that this will be an outlet for Oia and a great way to help facilitate more verbal language. In a perfect world, we should be getting the loaner next week. Oia will be beside herself to have a computer that she is actually allowed to play on. My laptop is generally off limits and it kills her.
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Tuesday we head to northern VA for another ophthamology appointment. This appointment is just the usual 6 month check-up but Rob and I have question as to whether or not Oia's left eye is beginning to cross, or look inward, more than usual. It's always been the straight eye. Could it be that it's time for left eye to have surgery now? (sigh) We shall see.

5 comments:

  1. HI MO
    I WAS READING YOUR THOUGHTS ON BOTOX.. AT THIS POINT I HAVE HAD 4 OR MAYBE 5 WEEKS OF A GOOD STRETCH.. I TOO WILL HAVE TO SEE IF IT LASTS TIL I SEE THE DOCTOR THAT RECOOMMENDED IT..

    I HAPPEN TO SEE HER THE OTHER DAY AND I ASKED WHY MY CALVES HAVE BEEN SORE SINCE I HAD IT.. SHE SAID ITS BECAUSE THEY ONLY PUT IT IN PART OF THE MUSCLE... I TOO HAVE NOT FULLY DECIDED IF I WILL CONTINUE THE BOTOX.. I "MAY" DO IT ONCE MORE TO SEE..

    OIA'S WEIGHT BEARING SOUNDS VERY SIMILAR TO MINE AS I TOO PUT A LOT OF WEIGHT ON MY LEFT SIDE. I HAVE DONE THAT SINCE I WAS LITTLE.. YOUR LITTLE ONE ALWAYS LOOKS LIKE SHE IS DOING AWESOME

    MELISSA

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  2. Mo, some folks would say you are through the worst of pregnancy now - I hope so! I find Botox quite scary - my PTs tell me I'd think differently if my child had way more spasticity - but I realize I may be faced with that choice later if Hannah has growth spurts and our situation changes. The whole "toxin" part of Botox just freaks me out. Do other moms report benefits longer than 3 weeks usually? I'd like to hear more from your commenter Melissa about her experience, and when the benefit drops off. I don't think I have advice except trust your heart. As to speech delays, I know comparisons are of little value but have faith. Hannah just started coming out with words that are not repeats of what is said to her or in response to pointing etc. How well the words are articulated leaves room for improvement but we just saw a jump in language development for no known reason, and I just watched the least verbal kids in her day care class do the same thing, and they don't have the challenges to overcome that our kids have. We have been reading alot and starting to work with letter puzzles and letter cards and the fridge magnet letters and that is the only newish thing I've added - don't know if there is a connection or not. I think the assistive techniques might be a crutch as you say, but since you now know her teachers think she is really smart, you might also see these techniques as ways to get her excited about being better able to communicate her thoughts, and thus stimulate language. It makes sense to me. Hang in there. She is really, really awesome, Mo.

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  3. MO I WILL SEND YOU AN E-MAIL AND PLEASE PASS MY E-MAIL ADDRESS ONTO GINGER SO I CAN TALK TO HER ABOUT THE BOTOX.. THANKYOU

    MELISSA

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  4. You and I are three days apart! My due date is July 29th! Have I already exclaimed over this? I'm finding it very exciting. This pregnancy is also kicking my butt. Less emotional turmoil, but physically I'm finding it extremely draining. I spend my weekends horizontal on the couch.

    Sounds like Oia might be a good candidate for PERCS. I don't know a lot about it, but it seems to work on spastic hamstrings and it's permanent. Like I said, though, I don't know a whole lot about it.

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  5. I am a speech-language pathologist who works with preschool students and I stumbled across your blog. I just wanted to comment on using assisstive technology. The current research in the field indicates that children who have delayed expressive language benefit from using AT to help build and develop their language skills. The research also shows that using AT actually helps children develop spoken language. Children who use AT do not use it as a "crutch" but rather as a stepping stone. Additionally, starting it younger rather than later is also reccomended in the literature. I have found the iPad is a great communicative device. The proloquo (sp?)to go app is especially great. I hope this info is useful to you.

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