Tuesday, October 31, 2006

Little Witches

Ahhhh...what a long weekend I had. I got home late this afternoon from a three day/two night conference across the state. It was really inconvenient for us moms to be rushing home on Halloween! But, we got it together and the girls had a fun evening. They were seriously cute in their little witch costumes. Both girls were a little out of it (and crabby) cause they are just getting over being sick (and being away from mom for 3 days). The trick-or-treating was a fabulous distraction. Except that all good things must end, and Holland just doesn't understand WHY. She cried when we came home and said "no, all done" and "more, more" while pointing to the door.

Speaking of which, it is kind of frustrating that she throws a fit whenever anything is over. I LOVE to do new and fun things with the girls, but H is at an age when she HATES to stop doing anything fun, and she throws a big ole tantrum. It's tricky trying to decide when to go ahead with a fun venture, and to be constantly clever with transitions and distractions at the end of an activity.

Anyway, these pics don't completely capture the utter cuteness of the girls in their THIRD Halloween costume (can you believe it?). I think I will dress them again tomorrow and give it another try. It's especially hard cause I don't have a good camera. I was trying to take pictures tonight with a broken camera and a 32MB memory stick! I really need a new one. Anybody got a money tree I could shake?

Thursday, October 26, 2006

One Year Post Activation

Eden had an appointment this week for her 1-year post activation evaluation. Her cochlear implant was activated last year on Halloween. The speech and language evaluation showed a lot of scatter in her skills, which is to be expected, but overall her receptive language is at least where it should be, in the 12-15 month range, if not above. She is listening very well, and it has become natural for her. She also understands a lot of what she hears, can follow simple directions, and can identify many objects and familiar people by pointing or eye-gaze. She is clearly a genius:)

Eden's expressive language is not coming along as well as I had hoped and envisioned when she got her implant. This is not due to her hearing at all. Her newest audiogram shows that she is hearing all of the sounds necessary for speech development, and her hearing is essentially in the normal range. The difficulties that she is having with expressive language are due to the Cerebral Palsy. Often times, children with severe CP are not able to talk because of poor oral-motor control. They are not able to control the muscles of the face to allow them to form words. This is not Eden's problem. She has fairly good oral-motor skills. She is able to easily move food around in her mouth, swallow, and uses her lips and tongue very well. Her difficulties are all related to poor trunk control and lack of adequate breath support. I had no idea how much her low trunk tone would affect her language development.

I go through many ups and downs in any given week. In any given day really. This week I am feeling very down again thinking about the difficulties that Eden will face in learning to communicate. The speech therapist talked a lot about getting Eden started on some sort of augmentative communication system. At this age, it would be some sort of picture exchange system, moving to a computer as she gets older. This therapist thinks that Eden will learn to talk, and will be able to speak in sentences to us at home. She thinks that Eden is going to need support in talking in a group setting or when giving any sort of presentation in school or at work when she gets older. Becaue of her poor trunk support and breath control issues, she has a hard time projecting her voice and tends to be very quiet. In the future, she will likely have trouble maintaining control of her voice long enough to carry on lengthy conversations.

On my journey toward learning to accept Eden's disabilities, I keep having to continuously revise my vision of what she will be like as a child-teen-adult. In the beginning, I thought it was the end of the world that she could not hear. With the CI, it was easy to get over that. Then came the diagnosis of CP. We were told early on that it would likely be mild. I met a lot of kids with mild CP, and realized that I could handle it. No big deal. As Eden has gotten older, and we have come to the realization that the CP is more significant than we originally hoped, I have even gotten to the place where it's ok if she never walks. I have pictured her in a wheelchair, sitting up, wheeling herself, talking, laughing, just being a normal kid in a wheelchair. I can handle that. It's hard, but I can deal with it.

Still, things are ever changing. Eden is two and cannot hold her head up, or sit up. What if she can never even sit in a wheelchair? What if she need a wheelchair that reclines and that she has to be strapped into and be fully supported? Can I handle that? Who knows? Maybe I can. As long as she is happy and can think and talk. More than talk. Communicate her ideas and emotions and dreams. Be fully involved in her world. This is what is the most important to me. I can see in her eyes that she is smart. She is taking everything in. She has an amazing sense of humor and determination. She is empathetic and a good problem solver. I do not want her dreams and ideas to be stifled by what her body can or cannot do.

Eden wants to do everything. Just this morning she was yelling at her sister to get off the bike because she wanted a turn. She was crying and pulling Holland right off the bike, then looking at me to pick her up and help her ride. She wants to run around with the other kids, she wants to wrestle and chase the dog and play the piano and jump on the couch and build towers and push the shopping cart. She knows that she needs help to do these things, and she demands help when she needs it. I do not want the light that I see in her eyes to go out.

Language is everything. It is the foundation for learning to read and write, and even think. Already Eden's brain is beyond "what's that" and "up, up, up" but those are the things she can say. There will be a point, if she doesn't learn to talk and express herself, that her learning will be stifled. I cannot let that happen. So, I guess I will start learning the picture exchange communication system, and will start learning our options as far as assistive technology goes. It is so hard for me to let go of the idea that she will be a normal little girl in a wheelchair. And I'm not ready to let go of it entirely. We'll do the pictures and we'll do the computer, but I'm holding out hope that she will talk just fine. But even "hoping" has become hard...

Sunday, October 22, 2006

Hana and Enid

Holly has finally figured out that SHE is Holland and SISSY is Eden. When I get her up in the morning she asks "Enid?" When I put her in her chair to eat, she points to Eden's chair and says "Enid chr." And any time she meets someone new and is feeling a little shy, she points to her sister and says, "Enid" to get the spotlight off of her.

Even more recently she is starting to say her own name, "Hana." She'll point to different body parts and say "Hana her (hair), Hana bey (belly), Hana no (nose)." She'll also point to other things that belong to her and make sure we know, "Hana chr (chair), Hana coat, Hana bankie (blankie)." It's very cute, watching her journey of self discovery.

I've heard and read before that it can take twins a little longer to figure out what their names are. It takes some time for them to distinguish who is who, and for a while they will answer to both names. But now, she's got it. Hana and Enid. Nice names. Wish I woulda thought of them...

To Illustrate My Point

Nice and neat...

Five Minutes Later...

Okay, so these just happen to be different days, but really, it happens.

Monday, October 16, 2006

Too Much Work

Sorry, I've been slackin on my blogging a bit lately. Have I mentioned yet that being a mother is EXHAUSTING? There is never enough time. Nothing is ever finished. My house is a mess and the girls and I spent the entire day in our pajamas. I've come to the conclusion that NOBODY can do it all. If their house is spotless, their kids are picture perfect, and they appear to have it all together, then there's something wrong somewhere.

I cannot keep my house clean, take care of my kids, take care of myself, and WORK a part-time job at the same time and remain sane. Or alive even. If I were to try, I am sure I would DIE from exhaustion. All the things I am expected to do in a day...brush my teeth, shower, comb my hair, get dressed, get my girls up, brush their teeth, comb their hair, get them dressed, make breakfast, feed them breakfast, eat breakfast myself, change diapers, put Eden in her stander, play with my kids, vacuum the carpet, sweep and mop the kitchen, do laundry, fold laundry, put laundry away, unload the dishwasher, load the dishwasher, check the mail, pay the bills, pack the diaper bag, drop the girls off at Nana's, go to WORK, pick the girls up, make lunch, feed lunch, make dinner, feed dinner, clean up from breakfast/lunch/dinner, the list goes on and on and on and on.... It is truly impossible.

Something has got to give. My kids can't watch videos all day so I can clean. I can't let my house fall apart around me. I have to work. John has to work. All of these things HAVE to get done. But I also want to have FUN with my family. And what about time for ME? I need that too! I constantly feel like a failure because I can't manage to do it all. Nothing is ever done. It drives me crazy. I know many people who seem to be doing it. Maybe I just don't see beyond the surface??? It must be that they only clean their house when they know I am coming. PLEASE, stop cleaning your house because I am coming! I need to know that I am not the only one!!!

Well, my house is messy, but we do manage to occasionally sneak in a wee bit of fun. The girls absolutely LOVED going to the cider mill and petting farm. The goats were absolutely the biggest hit. There was this one super sweet goat that ate out of the girls' hands. Eden was just so excited, squealing and trying to lunge out of the stroller to get to those goats. Holland kept saying "dog-a, dog-a, dog-a" because she thought the goats looked like dogs. We would correct her, and she would say "goats" but a few minutes later she was back to calling them dogs. She really gets so caught up in what is happening around her, that we can't even get her attention. It's like we don't exist. I'll call her name over and over trying to get a good picture, but she won't ever look at me. She is so funny. The cider, doughnuts, and pumpkins were also a big hit. So, we did manage to sneak in a little bit of fun. But boy is my house a mess.

Friday, October 06, 2006

Perfect Ten

Big family news flash! Malachi is going to be a big brother! Yes, it's true, my brother and sister-in-law are expecting again. The new baby is due in April, which will make s/he and Malachi 19 months apart. Almost like having twins...but not quite.

This will give my mother her "perfect ten." Of course, we all know they will be 10 perfect tens:)

And of course, no post is complete without pictures of my kids. So, here's what Holland and Eden think of the news...

Thursday, October 05, 2006

Monday, October 02, 2006