Monday, July 26, 2010

Points of Interest

  • We now lovingly refer to the house we are staying in as "The Cheese House." The house is very unique in style, particularly when compared to other houses on the street. It is square and kind of a yellowish-green color, with a flat roof and brown shutters. After seeing the house for the first time, Eden said, "I think it looks like cheese. It's a cheesy house. When we come back I think I am going to cut it up and eat it!" She cracks us up.
  • Holland has a rash around her mouth. It looks like eczema. My assumption is that she is allergic to something, but we can't seem to pinpoint what it is...especially because nothing in her diet has really changed and it started before we came out to Grand Rapids. I have developed and tested several hypotheses, but every time I think I have it figured out and it's improving, she wakes up with it looking terrible again out of the blue.
  • Eden goes swimming with her CE class on Mondays. Now that she has a new cochlear implant processor we decided to play around with her back-up (old) processor to see if we could devise something that would allow her to hear while swimming. So we rigged up a way to keep it on her ponytail with a plastic baggie over it - and it works! It's really nice bc her conductor gives a lot of instruction while we are at the pool, and Eden can actually follow along. It is always a source of frustration for us when she can't hear in the water.
  • I've been noticing that Holland is really on her toes a lot these past few weeks - literally. I thought it was getting better for a long time, but now it seems to be quite a lot worse. Her feet have grown quite a bit lately and her old shoe inserts are getting small. We just got her a new pair of PollyWogs and will have to do some shoe shopping and see if a better fit helps the situation. She does not have any muscle tightness related to her CP. This seems to be more idiopathic toe walking - maybe some sort of sensory or proprioceptive thing. She'll come down if we remind her, but is usually back up within seconds. We've tried to avoid any more restrictive bracing, but I wonder if we might have to explore it further down the road.
  • Eden cried last week when we went home for the weekend. She didn't want to leave the cheese house. She says that this house is better for her because it is close to her school, she can get to every room by herself, the bathroom is by her room, and her bedroom is pink. I think the pink bedroom is the real clincher for her. We put our real house up for sale before we left. No one has looked at it yet. But someday I hope we will be able to buy a new house that meets all of Eden's criteria.
  • Holland is really loving her summer camps. This week she is back at gym camp. It's at a place with a huge gymnastics area...soft squishy floor with built in trampolines, ropes and bars and rings to swing from, foam pits, etc. There are only a handful of kids there each day so she pretty much has free rein to do what she wants and she looooooves that! The "nature" camps at the Meijer Gardens are great too - more kids and more structured - but Holland is a true nature lover so she really enjoys that as well. She calls herself a "collector girl" and wants to collect nature everywhere we go. She especially enjoys collecting rocks, sticks, and pine cones, and on her first day of "nature camp" she came home with a handful of rocks and a note that said she enjoyed collecting rocks on their nature walk:-) She gave one of her rocks to Eden - one with a pale pink tinge, and Eden calls it her "lucky rock."
  • Eden loves to eat hard boiled egg whites and mushrooms from a can. She loves the texture and taste of those foods and will happily chow down on them as snacks. Holland can't stand either one. She actually won't even try them because the texture freaks her out. If she accidentally gets a mushroom in her mouth when we are eating pizza she starts gagging! It's crazy how different these girls are!
  • We get a free membership to the gym next door to Eden's school while we are here in Grand Rapids. What a major perk! I have been working out several times a week for the past couple of weeks and it feels GREAT. I used to work out regularly before the girls were born, but hadn't been to the gym since - until now. I had forgotten how good it feels. Now I wish I could figure out a way to incorporate it back into my regular life. I need to have a strong back and body, and good endurance, to be able to help Eden. She's not getting any smaller.
  • We met another set of preemie twins while visiting Holland, MI on Saturday (our 12th wedding anniversary). A family from California came up and introduced themselves to us. It turned out that their twins were born at 27 weeks. One of them suffered a grade III/IV brain bleed at birth and now has mild cerebral palsy. They were beautiful grown-up girls celebrating their 18th birthday! One of them keeps a blog called Teen Cerebral Palsy that is quite informative and a great resource for other teens with CP. I was glad that they took the time to stop and chat with us.
  • My babies are going to be SIX in 5 days. Un-frickin-believable. I don't feel sad around their birthday anymore. I mean I might if I just sat and allowed myself to, but for the most part we are so busy that I don't have the time. Plus it's hard to be sad for long when I have two lovely girls so full of life and vigor anxiously counting down the days. They are so excited this year and I am just going to try to enjoy all of that excitement with them. We are going to an amusement park and are going to have a crazy fun-filled day. I know they will enjoy every minute of it. They always do.


Becca said...

I have terrible proprioception issues, and poor nerves in my feet after many surgeries. I often found myself toe-walking for the extra feedback. What I found helped was to wear shoes with thinner soles, so it was easier to feel the way my whole foot was hitting the ground.

ElizabethZ said...

Just a thought on the mouth rash thing, was just talking to someone the other day that had a rash around their mouth pop up out of nowhere. They had switched toothpastes....if you are using something different while away, that might be the culprit.

Katy said...

The are getting SO big. It's amazing to me--you can just watch them grow on this blog.

Billie said...

We DID switch toothpastes recently! You could be on to something. This will be my next experiment... Thanks!

stacy said...

conner has become an intermittent toe-walker. it depends on the shoes and the speed that he is going. but his pt thinks it could be worse when he is in a growth spurt, or grows a little and his body has to adjust. or it could be sensory...but since he doesn't talk, we don't really know. he isn't tight either.

Anonymous said...

Great post!!! Amy