Monday, July 26, 2010
- 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.
Posted by Billie at 9:19 PM
Monday, July 19, 2010
So here we are!
Eden is attending the Conductive Learning Center in Grand Rapids, Michigan. CLC is on the other side of the state for us...about a 2 hour drive. I had heard about the program years ago and kind of wrote it off as much too expensive and inconvenient to really be a possibility. I made a lot of excuses about why it was not an option, and I think they were valid excuses. I did not think that Eden would have been able to handle the stress and work load when she was younger, and I was afraid that putting too much pressure on her would have a negative impact on her body as well as on her spirit. I also worried that I would not be able to handle being separated from Holland and John for such a long period of time, and couldn't quite get to a place where I could justify the time and money commitment without knowing how much (if any) progress Eden would make and if it would be a fair trade off for how it would impact my family. It really just didn't seem fair to anyone at the time, so I never pursued it.
Then, several months ago a parent on a yahoo group that I belong to mentioned that she had a walker to give away. It was a walker that I thought might work for Eden in the long term, and she lives in my area, so I scheduled a date to pick it up at her home. I talked to this mom on the phone, then had a long visit at her house. Her 7-year-old daughter attended a 4-week session at CLC last October and she raved about how great the program was and really encouraged me to check it out. I started researching it again and became really motivated to learn more.
This time things really started to fall into place and I thought of it as a very real possibility. I have the summer off work, so I wouldn't have to take any time off. John's employer agreed to let him work remotely so he could come too. An online acquaintance offered up some great suggestions for summer camp options for Holland. The director of the program put us in touch with another family who offered to let us rent their house for the summer. We made a visit to the program for an assessment, and we were impressed by what we saw. Eden has made tons of progress over the past years in terms of her cognitive and language development. So much so, that I was sure she would be motivated and would want to do it. She is also at a great place physically, where I felt like she could handle the work load without being completely exhausted and losing too much weight. Plus, developmentally she is at a point where she is able to crawl and get around, and is really wanting to pull up to kneeling and bear more weight on her legs for walking.
So with much discussion, and a great deal of courage, we decided to go for it.
We are now two weeks in to a four week summer camp session. She is attending Monday through Friday from 9am till 2pm. And we are loving it. From my perspective, as a parent and not an expert in conductive learning, the gist of the program seems to be that by doing certain movements over and over, kids with CP can gain functional skills. A lot of the activities they do are similar to what Eden has been working on for years with her physical therapist. But, rather than working on these skills for 1-3 hours per week, she is working 5 days a week, 5 hours a day. They put a lot of focus on getting her to take responsibility for her own movement, to pay attention to her body and what she is trying to do. They have some unique equipment (wooden plinths, ladder back chairs, parallel bars and PVC pipes, etc) that they use to assist her in gaining certain skills. They sing songs, read stories, and incorporate a theme into each session (the theme for Eden's camp is Pirates), but everything they do is actively targeted at improving each child's physical functional abilities and maximizing their potential.
It's pretty strenuous. Every child is expected to do the MOST that they can possibly do. I got snapped at today because I picked Eden up to take her to the potty. She is supposed to do as MUCH of the work as possible in getting herself to the potty...which means that they bring the potty to her and she has to stand up to help get her pants down then help lower herself independently to the potty. When she is finished she has to pull herself up to standing, to help pull her pants up, and walk back to where she needs to be and get herself into the right position to continue working with the class. Whew.
I was not expecting any miracles. I knew that a four-week Conductive Education summer camp was not going to make Eden walk. I must admit that deep down in the recesses of my being, I kinda wished it, but the ever-present logical part of my brain was always there to give me a reality-check. I am a little bit cursed with an overabundance of logic and skepticism. It's one of my many flaws.
So we went into it hoping that it would be a nice change of scenery, would give us some good ideas on how to change things up a bit, and would hopefully be a great adventure. And that is exactly what it is turning out to be.
I am learning a lot that I will definitely be incorporating into our everyday life. Eden is making really good progress, and I have seen some amazing results from her hard work and persistence. She is not walking. She is not really even standing and pushing a walker as well as I had hoped she would at this point. But...today during the line program she was able to keep her legs straight while lying on her back while she swung a ball up and down and from right to left with her arms. It brought tears to my eyes (I actually wanted to bawl but there were other people there). She couldn't do that last week. And yesterday her stepping out to meet me in the hall was the best it has been. And one of her conductors told me that she stood really well at the bar wall and was able to stay standing through an entire song! And when I went in to meet the class for swimming on Monday she was sitting by herself on the floor tugging mercilessly on the second sleeve of her shirt AND SHE GOT IT OFF ALL BY HERSELF! Then she put her bathing suit top on with very little help and was so, so proud of herself.
So yes, she is making progress. We have had very minimal tears, and she looks forward to going every day. She really enjoys watching the other kids and I think she really feels like she is part of the group. The program is really well run and I have felt welcomed by the staff and other parents.
There are other things that have fallen into place to make the whole experience even better. The house we are staying in is perfect and close to everything. Holland is thoroughly enjoying her own summer camps (last week she did gymnastics camp and this week Little Diggers at the botanical gardens) We are all enjoying a little break from the monotony of everyday life, and it is shaping up to be quite fun.
Now I just have to figure out how we can get back before next summer. I'm thinking February.
Posted by Billie at 4:52 PM
Friday, July 09, 2010
It came!!! Unfortunately, after all the excitement...after we got it hooked up and ready to go, Eden cried when we put it on because she thinks it is too loud. I'm not exactly sure if it really is too loud (it is supposed to be the same map that she has currently), or if it is just different due to the sound being crisper and clearer, but either way, Eden doesn't want to wear it. We'll do some tweaking over the next couple of days...giving her some control over the volume and such, and see if it will fly. If not, we'll have to figure out some way to get home for an audiology appointment in the next month. But, we have it, and my hard work paid off!
Off I go to finish packing for our month long foray into conductive education. We are leaving in the morning and I am just now realizing that I have no idea how to pack for a whole month away! Luckily it is not too far so if we forget anything major we can always make the hike home. Wish us luck!
Posted by Billie at 11:21 PM
Thursday, July 08, 2010
Eden's cochlear implant processor was under warranty for the first 3 years. During that time frame the company (Cochlear Americas) replaced anything that was broken quickly with excellent customer service. The warranty expired on October 2, 2007. During the first year following, we really didn't have many problems and everything worked as it was supposed to. Since then, however, things have been breaking slowly, and we found out the hard way that replacement parts are VERY expensive (like shockingly, ridiculously expensive). But, we have made due with what we have and have luckily not had to invest a huge amount of money in keeping her processor in working condition.
Currently, her system is broken in 3 places. For the past 6-12 months the connection has been getting looser and looser. It shuts off on her at random times, and we have to keep it taped securely together for it to work. I started the process of trying to get a new processor for her last December. I found out that Cochlear had just come out with an upgrade that is compatible with Eden's system, so I wanted to upgrade at the same time that we replaced the broken processor.
For the past 7 months I have gone through the usual rigamorale of red tape...countless hours on the phone, faxing, loads of paperwork...basically trying to coordinate communication between Cochlear Americas, our implant center, our private insurance company, and Michigan Medicaid. None of this was actually too difficult. The frustration came in KEEPING the ball rolling. It seemed like nothing would happen for weeks (even months) unless I kept calling or emailing asking, "What's next?" There were other frustrations too...in terms of misinformation and runaround...but I won't go into detail about that because it is completely boring, even to me.
But...drum roll please...
I got an email today that they got final approval from Medicaid and are overnighting the new processor today! I should have that sucker in my hands sometime tomorrow!!! I am so giddy with excitement. I can't wait!
I know I shouldn't get my hopes up. I'll believe it when I see it, right? But could it be true? Is it possible Eden will have a brand new processor, with a new 3-year warranty, by tomorrow? Before we leave for Conductive Ed camp?
Oh, please, please...let it be true!
Posted by Billie at 1:44 PM
Tuesday, July 06, 2010
Just wanted to shout it from the rooftops...
My Edie-Pie is potty trained!!! No more pull-ups!!! It took 9 days for her to fill her sticker chart. She chose a trip to Chuck E Cheese as her big surprise.
Today was her third 100% accident free day, and she is telling us she has to go every time now without reminders. We've even gone to parties, hippotherapy, long car rides, restaurants, etc, with very few accidents this week.
And what, you may ask, did the trick??? What was the magical potty-training tip or tidbit that ended up working? Time. That's it. She just needed time.
This time, when we put in the extra effort, she was ready.
Posted by Billie at 10:05 PM