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Mostly.
Good news over the last month:
We spent Spring Break at home with the kids. No therapies, no karate, just family time. We went to Going Bonkers, ate out. We hoped to do more than that but Groupon had an error on our movie tickets the day we could go, and other places were crowded to the max. We'll try to go to the Zoo and other places on the weekend as money allows or as there are group-buying-site deals. They said they had a good week and that is what matters most to us.
Caitlyn's grades are good, and she's made some friends both in the neighborhood and at school. I'm grateful for that. She spent last year without any real friends and it was incredibly hard on her. I'm also grateful for the continued involvement of her Big Sister Rachel in being there for her and being her mentor (and granting me those moments of respite). She got permission from her teachers to apply for pre-AP classes next year in middle school. I'm worried about the pressure and the amount of work required, but I think she should have the chance to see if she can cope with the workload. She's so brilliant!
She has been on a trial of Concerta for 3 weeks and we go tomorrow for a follow-up with the dev ped about it. Her focus has been a little better, but after lunchtime she seems to "crash" into extreme irritability. We'll be asking about that. I don't know anything about changing dosages with this medication or balancing it out with her other medicine (Celexa). I have not seen the improvements we had hoped to see by 3 weeks. If you can tell me about your experiences with Concerta, please do?
Her greatest accomplishment was a "mock Congressional hearing" held at the school one evening two weeks ago. Her speech therapist helped her practice and we assisted at home with being her audience and pretend "Judges". She received excellent marks, and cracked up the volunteer judges at one point when asked what she would do to convince her older brother to vote - "I'd kick his butt". We're very proud of her, she had to overcome a lot of obstacles to participate including a timed, memorized speech she wrote herself; not fidgeting during recital; using hand positions to denote when she wished to speak.. and stage fright of epic proportions. I'm so proud that she was brave enough to do it and that she succeeded beyond my wildest dreams.
Rowan continues to regress in many areas, but we had a breakthrough with the OT today. We were able to get 5 minutes of sustained eye contact while she was on the "egg swing" w/a lap pad. She was able to do some fine motor skills work (tracing, drawing, coloring) between sensory activities - she produced more work product today in one OT session than she has been in a week at school. We also had a photo shoot today with a great photographer who got some excellent shots. I will share them after viewing/purchase next week. She really enjoys hamming it up for the camera!
Our oldest son Ashton received his gold belt in karate, and Caitlyn has received her third gold stripe and will belt test next week. Please wish her luck, she is very much looking forward to this and has worked hard for it.
The not so good news:
We had OT and PT private evals on the girls with mixed results. The greatest difficulty is their feet; Caitlyn's toe walking has led to collapsed arches and over pronation. While orthotics may be necessary ultimately, we are currently exploring other options such as the Skechers extended-wear Shape-Ups since she wears a women's size 8. In the week since we purchased these her pronation is greatly improved while wearing them and her gait has some correction. She appears to be less "clumsy" with her balance as well. We also purchased some arch-support Asics for gym class and other activities where the Shape-Ups might be a little risky.
Rowan's evaluation was much worse. She has zero degrees of.. please pardon me if I don't get the terms correct - heel drop ability/foot towards knee extension. She is an extreme toe walker, nearly en pointe when barefoot. Due to her small shoe sizing and wide foot width, "articulated AFO's" orthotics are being heavily suggested by the PT. Her OT report came back with a suggestion for a hand splint/brace as well to assist in her fine motor skills. The total cost we are looking at is $1200. We are hopeful that donations through Once Upon a Hero will be able to assist us with this. You can view our Wish here: http://www.wishuponahero.com/wishes/?id=880105#comments - and please, please share it on social networking sites. The greater visibility we get... if we can get 1000 people to donate $1 we will be extremely close to our goal.
We DO have some savings, but are working on setting up a PT/OT area for the girls in what was the upstairs playroom. Today I was given a list of what the OT felt were the most beneficial swings and equipment that she is responding to. I found a reasonably priced maker of weighted blankets and pads on Etsy that I'm following through on. It will likely take all of our savings to set up this area, hence our request for donations for the orthotics.
We have good/meh insurance. It's good that they cover OT, PT and speech - but our limits are not great. We have a self-funded union plan with a hard limit of 30 PT visits per calendar year, and 30 visits combined of OT/speech per year. In order to give the girls the best help, we need to be prepared to "go it alone" for a few months at the end of the year while waiting for calendar rollover, and also being able to reproduce their therapy at home to do it more than once per week will be highly beneficial. I'm watching craigslist and such - if you know of a discount supply for pediatric OT/PT items, please let me know as wrll.
Our copays are running about $500 per month right now on meds and therapy. I'm very grateful that we are able to cover this and have made cuts/savings in other areas. We are receiving partial scholarship for Caitlyn's special needs accomodated karate classes, which helps.
So a mix of good and not so good. I feel confident that once we get over the initial investment hurdles for the equipment and installation, and are able to go to once-per-two weeks on the therapy (after I'm trained in their exercises/spotting) that life will again approach balance. It's only hard right now, and we WILL get through this.
Rowan's evaluation through the school district continues. I believe we will go to ARD sometime in late April with the results. Wish us luck and bless you all.
