Hi,
Post Swim Weekend Warrior
Last weekend, Shannon and I were able to get out for the evening. Shannon’s mom, Ciaran’s Grandmother – Donna, watched over the little lady as she slept. As we drove home, Shannon and I were wringing our hands because we really haven’t seen any progress from Ciaran in the last month. It’s been pretty tough for the last 9 months to get Ciaran as much therapy as she needs. Spending 2 hours in the car sending Ciaran to the amazing Chime school, has taken a toll on speech, PT and occupational therapy. She does get some of these services at school, but they aren’t as intense as she probably needs.
What she has learned at Chime is the ability to socialize with other kids in a very positive environment. When we ask Ciaran to tell us about her day as school, it’s the most she “talks” in any given day. Of course it’s pretty hard to understand what she is trying to say, but because Chime sends home a little paper each day that details what Ciaran’s activities were, we are able to shape the conversation some and then recognize where this chatty gal is taking things. Despite not understanding the words, it is a treat to hear her little voice as she concentrates to kick her little words out of her little mouth. Something we have desperately missed in the past few years.
Ciaran’s school is a little funny. She gets a two week break starting this week, then goes back for 4 weeks to finish out right before the end of July. We are excited to step on the therapy gas peddle these next few weeks as a prep for the summer full court press. Got to get this warrior ready for Kindergarten.
Jessica does a really great job doing home based therapy during the week. Lately, each weekend, I have been trying to push Ciaran pretty hard.
Sat: Breakfast, the stander for an hour, work on the exercise ball and mat time for another 2 hours, followed up with some “walking”, which consists of me holding her up and pushing Ciaran to take steps. After lunch and rest time, we get on her bike and push her around the block only to be followed up with a swim workout.
Come Sunday: Hour in the stander, then head over to Ciaran’s grandparent’s house for a mile bike ride and 30 minute swim session. Come Sunday night both Ciaran and myself are pretty wiped out. Although not a ton of progress, she is getting stronger. She is getting more comfortable being pushed and we rarely see any tears.
During these weekend adventures, we have been running into Owen, who’s a 4 year old boy that lives down the street who plays in his front yard. Ciaran looooves Owen. He’s a curious little guy with a big smile and always asks a lot of questions to (and about) Ciaran. He’s always making her laugh. When we get home, the first word out of her mouth is always “Oooohhhwhennn”!. Amazing when she likes something the words seems to work okay…go figure… Yesterday when we biked by his house and he wasn’t out front, she kept staring over there hoping he’d come out. No dice. Hopefully next weekend.
The action plan for the summer – find a speech therapist who is close to the house (that takes insurance) who can really start to shape these works. As Dr Larry said to us back when Ciaran was in the hospital, “the most important thing you can do is Speech Therapy”. We have never forgotten this. Speaking is empowering and this kid needs some empowerment. Next focus is PT. We took her to Nancy (the amazing PT who knows Ciaran well but hard to get into see her) a few weeks ago to get a few things adjusted. We will also be starting up with CCS – a state funded program for PT and OT this week. They have access to a lot of great equipment that she desperately needs.
Some times when you are wringing your hands and not seeing progress, Ciaran surprises us. The other night as Shannon and I arrived home and were debriefed by Donna as to anything that took place while we were out, she said that Ciaran had rolled onto her back. (Red Alert – we don’t want Ciaran on her back for fear of aspiration.) Because of her injury to the brain, as well as the muscle relaxant Ciaran takes as night, getting stuck on her back is sort of like a turtle getting stuck…with no way of coming back over to her side/stomach. Well, as I looked at the monitor, I said to Donna, I don’t see her on her back….and Donna replied – that was because Ciaran had roller herself back over to her side/stomach (not realizing this was a huge accomplishment!) Shannon and I perked right up and shook off our down moment to feel a sense of pride that this little girl with some many challenges, has conquered (as least for this evening) one of the major things that have kept both Ciaran and us sleepless almost three years now. Who knew Ciaran would be making progress while she slept?
Funny how everyone has been sleeping much better since last Saturday night knowing there has been some progress.
Thank you so much for your continued support. It really means so much.
Doug and Shannon
