Dylan had PT at 9 with Pat but Mike (from the Spina Bifida clinic) was coming in for a consult about her AFOs.
Well, little gal did super fab! He was kind of holding her legs, supporting her but shaking her a little to play/tickle and she loved it, then he would let go and let her support herself for a minute. She thought it was great, and she was STANDING. So he did that a little, shook her, tossed her over his shoulder and made her stand. Piece of cake. So, easy enough, just a new way to play and she was very tolerant of her AFOs and standing.
He then focused on raising her level of play, all our toys are on the floor, and every where... so she doesn't have to stand to get them. Therapists have mentioned raising the level of play before but we had a hard time because everything up off the floor would be hard (especially now with our little resident army crawler, Ian). He mentioned that he would never ask us to do it everywhere, and then made her a Dylie corral. Taking an area of the floor, where the two couches meet, and penning her in with chairs from the table. Then he took cushions off the couch and put toys there. (He asked my permission before removing the cushions which let to a GREAT conversation about something he found under a cushion once... and it wasn't underwear which is apparently somewhat normal?)Well, she full on stood up to the couch with her AFOs on to get to the toys. Can I get woot woot?!
If, in three weeks of wearing the AFOs she isn't to where she is without them, then we will ditch them and try something else. He said the worse thing we can do is get it in our minds that they are the best thing for her. If they don't work? Move on!
They also brought over a stander to borrow and he said she was probably in his top three ever - at her reaction to standing in it for the first time. She didn't mind and actually seemed to like being up and eye level with Duncan. He pushed her around in it all over and it was great. Though... into a wall and the couch once or twice, so that will take some work. But she actually liked it. I was shocked. I was telling Duncan to be super careful not to run into things but not at all wanting to lock it or tell him no since Dylan loved it so much! Mike said 20 minutes at a time, I asked about three times a day and he was pretty funny about it. He said "If you want to do that, with all you have going on, then yes, that's great but I didn't say it!" Does he know parents or what? I think it would be more difficult to put her in if she didn't like it so darn much! He said he doesn't really like to buy them for kids because there's no proof they actually work, and it's such a limited time... so we have a loaner. It will be good to stretch her little legs out too!
They have put in a patent for a walker suspension system for kids like Dylan to get them walking and he'd like to see her in it so he's going to see about trying one, they only had a few made so we shall see. Matthew and I were wondering about her motivation to hold on to a walker, this sounds better so I hope we can try it. He might be back for another consult before she graduates from EI.
He also talked about a wheel chair, can you see little Dylie in a wheel chair? They have a wheel chair clinic to work out what you need with your chair and he advised to do it by the end of the year if we've met our deductible. Which, we are like $200 from even meeting the co-pay deductible, much less the 100% part... but something tells me that we will be meeting it by this time next year too. Since she's so little, I think we will put that off a few months.
He was funny too, at one point he said "it's that vinegar! That's what got her where she's at!" Commenting about how it's the kids that don't have motivation and don't want to do anything that it's the most difficult. Pan over to Ian who's just sitting in the high chair, having eaten all his Cheerios and special treat Fruit Loops and he's sitting in a lump watching TV. Nice. (To his credit though, he didn't feel good...)
So... success with the PT today! Super success! I left with a note to follow up on her walker, which we ordered on the 9th and to check on what type of therapy is covered by insurance. Mike said our house couldn't be better located for him to do in home therapy! Woot woot! I hope he's in plan, or it's going to be a little pricey, I will have to follow up with him.
I did call on therapy and there are really good benefits for in network, but I think he's out of network... I need to follow up with him to double check.
Next we were off to Dr. Ped. The night before I noticed Dylan might have a bladder infection so I called and they had an appointment at 8:10... PM! And it was Dylie's doctor who would be there late, and we love him... but Peds need to sleep too right? So I opted not to keep them for a "possible" bladder infection and made an appointment for 10:40 the next day. Then Ian woke up extra grumpy so I added on an appointment to peek in his ears. We ran to that appointment where we saw a doctor we hadn't ever seen. She was nice, but chatty Cathy! Which could explain why she was running nearly an hour late!! Dylan's clear, YAY! Ian's not, BOO! We stopped to fill the script and we were on our way by noon.
Problem... no nap (and now over-due for food) Dylan had her second group session at 1:00! Egads. We ran through the drive through and I set Duncan up in the back seat with his fries and nuggets (classic!) and drove home. Hurried to get Dylan's food ready while they were all in the car in the garage... and fed her right in her car seat! (Ian's now sleeping and I did not want to wake him.)
Made a quick call to uncle Kiko and we were off to pick him up. Again, not wanting to wake the little one... I told Michael I would buy him lunch if I could waste an hour of his life. He stayed in the car while I ran Dylan in (who ended up sleeping for a solid 15 minutes before I had to wake her...) while Michael stayed in the car with the boys. Then I ran to Costco x3, diapers are $6 off a box, with a limit of two. So Duncan and I made a few round trips while Michael did his best to entertain a now awake and grumpy Ian. Then, $300 later... we ran to get Dylan!
She had group with a tiny Hispanic woman who said she did great. And indeed, from what I saw through the window I could tell that it was a much better day. The two variables that we changed? No Sarah and no AFOs. So... hmmm. Food for thought there... I am so glad she did well though. Hopefully she will be nice and ready for preschool.
Finally got Michael lunch and dropped him off. We got home at 2:00ish and Duncan transferred nicely from his car seat to his bed. Dylan ate and then went off for a 4 hour nap! Pretty long for her, but we had a big day. Normally long naps happen after the therapists work her really hard, we had that and much more. I am surprised she did so well at group!
So yes, here's me not wanting to revisit my Wednesday any time soon. What a crazy day!!
Oh, and I did call on her walker, the approval had just come in so they were ordering it ASAP. She said they were running 4 weeks behind fulfilling orders and she was hoping they had caught up. The latest it would come is 4 weeks. Yay!
A couple of things that I want to remember with Duncan. Every time I tell him something is broken he says "Daddy fix it?" Yup, Daddy's amazing, he can fix ANYthing apparently. Works really well for mommy though when I say some thing's broken and daddy will fix it when he's home, I can wash my hands of it!
Also, the other day I stood him up after getting him dressed and the sunlight was beaming through the living room window (it's really rather annoying actually, it's from windows that we can't really cover...) and he say the little dust in the air, you know the tiny strings and stuff, and he says "mom, bu-fies, I catch'em!" and clapped his hands up high in front of his face! It was adorable... trust me... it was.
Matthew gave him an ice cream cone in the back seat the other night. Which... Jill put it best "In what situation is it EVER okay to do that?!" Uhmmm... yes. She also added it would be grounds for divorce at her house.
And we also made the kids' very first dentist appointment! It's not for a month or so. Should be interesting. I chose a place that works specifically with children and special needs children so Dylan's gorgeous demon teeth with her big ol' single central incisor wouldn't be too much of a shocker. They also have oral sedation available if needed but this first appointment should just take some good old man power. Can't wait to see what her adult teeth will look like!!
I have been nursing a fever on Duncan today, 101, egads... "mommy, I'm cold..." can be a very bad thing. Just hoping it's not from dragging his Fruit By the Foot on the Dr. office floor yesterday! *shutter*
This ball is a set I picked up at Costco, it said 'sensory balls'. She loves them. A lot. she will bat one around and chase it since they don't run away as quickly as the non-bumpy versions. There are six balls in the set. Highly recommended!
In the stander - kissing a cow
Duncan wants to ride too - Usually he's pushing her, he just barely had her in the hallway, trying to get her in their rooms.
This was two seconds before she leaned waaaaaaay back and booted him off. He must've bothered her!
More stander, more ball.
Deciding what to grab, and throw... she likes to empty the bowl of toys, or as many as she can reach anyway.
Okay - it seems like there are a lot of pictures of the same thing now... I can't help it, she's so cute! You know you only ever see a quarter... maybe a tenth of them too right?
I was trying to take a picture of her corral, but... this...
would be her very first time standing up to the couch with the cushion on which is higher and softer than what we saw her stand up to yesterday! Woot woot! I didn't even get the corral I was so excited!
Okay - yea, more of the same thing, sorry!
My sickie on the couch - I could tell his fever broke when he got up, he was laying around for a little while.
Just barely took this (post nap... notice the hair all messy!) She's funny.
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