Thursday, May 07, 2009

What's going on?

My brain is a jumbled mess right now. I feel the need to get some of this information out of my head and onto the blog so I can think straight again!

I took a weekend trip to California to visit with some of my dearest friends. We had a fabulous time, despite the fact that two of us (including me) were sick with a yucky bug. I am still sick in fact, putting a slight damper on the joyful reunion with my family I was envisioning after my little vacation. I imagined that I would be rejuvenated and ready to tackle the world, but ended up needed a couple more days to recoup. I may even need a few more still. My poor husband. He's the one needing a vacation now!


The girls, particularly Eden, seem to have a little virus too, but overall it has been just a minor annoyance (so far) and they have mostly been happy and doing well.

So anyway, I've been meaning to do an update about the girls and what is going on with them lately. So here it is...

Holland had an eye doctor appt a couple of weeks back. The vision in her left (weaker) eye has gotten worse again, and she is not using it as well as she was. So, she got a new prescription and picked out a new pair of blue frames (her favorite color). We also started patching again for 2 hours each day. She has another appt next week to see how it's going. There is a possibility that she is going to need another eye surgery. We put it on hold 3 months ago because she was doing really well, but we may have to revisit after we see how things are going now with the new prescription. One of my goals for the summer is to look into vision therapy. I understand that there are mixed reviews about it's effectiveness, but I feel like we should look into it if we are considering another surgery.

Physically Holland has made a lot of progress over the past year. Her balance has improved and she is falling a lot less. She is much more sturdy and we can even let her play on a jungle gym more or less independently and trust that she will be safe. She is also allowed to go up and downstairs on her own, as long as she holds the railing. I just talked to the school PT on the phone, and she said that Holland's motor skills tested in the 33-36 month range. She still has an awkward gait, particularly when she tries to run or jump, and she holds her left hand out or up a lot of the time. We have to remind her frequently to pay attention to that left hand...otherwise she sometimes forgets it's out there in space:)

In terms of learning, Holland is pretty much spot on. She's really smart, with a great memory and a great sense of humor. She can recognize almost all of the upper and lowercase letters, knows most of the sounds (not perfect, but on track), and recognizes several sight words. She is great at rhyming, and identifying words that start with the same sound. She is very interested in spelling, and asks me to spell words for her all the time. She picks up new vocabulary every day...even when we don't want her to. She also remembers, and reminds us all when we say something we shouldn't. She's the PC police at our house. We're "not allowed" to say:
"What the...?" (This one came from preschool.)
"I need to take a dump." (Thanks for that one daddy...lovely.)
"I'm gonna kick your butt!" (We love our cousins!)
"I'm gonna kill you." (Cousins again)

At school I see Holland's weaknesses in transitioning from one activity to another, and getting started on and completing her work independently. She nevers wants anything fun to end, and still melts down in tears or pouts when it's time to stop playing or come in from outside. She needs a lot of direction to complete tasks with several steps, and has a hard time staying on task. Even going to the potty is a chore because it takes her so long to follow through. A lot of this still has to do with motor weakness, but attention span also plays a huge role. I can always tell her school work from Eden's, because Eden will cover the entire page with paint or color, while Holland will make a few marks and be done with it.

Sometimes it takes a lot of patience to be Holland's mom. She can be demanding and whiny at times, but she is also really sweet and reasonable, so we work it out. Everynight at bedtime I tell her "I love being your mom." She usually responds, "I love being your daughter." Except for one day last week when she said "I love being your dog...woof" And just last night when she said "I love being your honey."

Eden is making gains across the board right now, and I am really excited about her physical milestones, as well as huge advancements in her language skills.

I have to credit hippotherapy with some of the improvement in her trunk tone over the past few months. She has been riding for about 9 months now, and we have seen consistent progress. In the beginning she had two side walkers holding her up at the sholders. Now they are able to do just a thigh hold, and she maintains the sitting position on the horse all on her own while holding the handles. She consistently catches herself and pushes herself back up if she starts to slump over. There are very obvious improvements in her strength and posture and she can ride for close to 45 minutes now before getting tired. Just yesterday two of the older gentlemen volunteers who hadn't helped her for about a month had a chance to work with her. They both commented to me separately how much improvement they saw in her. Eden's hippotherapy PT has also been raving about how much change she has seen, not just physically, but in terms of how well she is speaking and the concepts that she talks about and understands while riding. We LOVE hippotherapy!

Eden had a little physical setback last weekend. On Friday her home-based PT noticed increased tightness in her left leg and did a lot of intense stretching with it. Eden complained several times that it hurt. Then, over the weekend John and I both noticed that she was having a hard time crawling, was falling and hitting her head a lot more, and wasn't standing very well at all. On Monday she came home with a note saying that she didn't want to stretch out her left leg in the straddle sitter and was complaining that it hurt. So, I checked it out. She said that the pain was in her knee, and she didn't want to straighten that leg out at all. She couldn't long sit or bear any weight on it. It even appeared to be a bit swollen. Long story short, I called the doctor, talked to one of her PTs, made an appointment, and John took her in while I was out of town. The doctor bent her leg a couple of times, asked her if it hurt, and announced it was fine. And, after a week, it does seem to be fine. But it did really worry us for a few days, and I started having heart palpitations and stress thinking about something being broken or dislocated or out of whack...and surgery...and pain...and medication. It made me really nervous. I hate always having to think about these things. I also hate the fact that I can never get comfortable. I'm always waiting for the next shoe to drop.

In better new, I cannot express enough how amazed and in awe of cochlear implant technology that I am. Eden's language has gone through another recent spurt where I can just see so much more depth of understanding and expression. We've just gotten to another level, so much that Holland is able to understand Eden now, and they are playing and interacting in a whole new way. They are spending hours now engaged in imaginative play with each other, pretending to be store clerks, customers, chefs, teachers, students, babies, dogs, farmers, doctors, oh, and did I mention DOGS? I loooove to listen to the chatting with each other while they play, and actually getting along. They still fight and argue a lot, but at least they seem to be past the worst of the "gimme my toy" stage, and can actually appreciate each others' company for a while.

We were riding in the car one day and Eden was pretending to have a pet cat. The cat's name was "Matah", she wore glasses like Holland, and had a purple leash. Eden was talking about her "cat" and kept saying "he has glasses" and "he has a purple leash." I asked if her cat was a boy or a girl, and she said "a girl." So, I told her if it's a girl, you have to say "she", like "she has a purple leash." Then all of a sudden I saw that little lightbulb come on, and knew that she got it! Right away she started correcting herself when she slipped, and within a couple of days she was using "he" and "she" correctly every time. It was that easy, because she was ready. It has hit me recently that she is going to be correcting everything soon, even those really endearing things that I love, like how she says she wants one of "daddy's wakkles" for breakfast, or that a "catterkiller" turns into a butterfly. We may have to start using "wakkles" and "caterkillers" ourselves so we can hold out as long as possible...like we did in our family, when we all started saying "prinzels" instead of pretzels, so much that my little brother didn't even know they were really called pretzels until he was about 12!

Eden is learning fabulously right now too. She also knows all of her letters and sounds, and has a great sight vocabulary for a 4 year old. She recognizes everyone's names, as well as the words Pizza, and GO, in any context. She can also finger-spell...she knows the whole alphabet and can spell many words in sign, including Mom, Dad, Holland, Eden, Zippo, Nana, and Papa. She picks up new signs really quickly, and I would really like to take a sign language class so I can learn enough to start communicating with her when we are swimming, taking a bath, or at bedtime, when she doesn't have her CI processor on. Eden is an awesome lip reader though, and we carry on entire conversations without her hearing on...so much that it surprises people who think she MUST be able to hear. Even Holland tells me, "well she can hear a little."

Eden is at a point where she is starting to understand a little more about her disablity. I can tell that she is getting a bit sensitive in talking about it and sometimes her eyes will well up. We're getting a little more of the "I just want to watch" mentality, and it breaks my heart. This is going to be tricky for me to navigate. I want her to have a sense of confidence and self-assuredness, while at the same time accepting and understanding her physical limitations. I try to do this by talking about about her disability matter-of-factly. I try not to say she "can't" do anything. Instead of saying she "can't walk" or "can't hear" I usually say she uses a wheelchair or a walker to get around, and her "hearing" to help her hear. Just like Holland and Mommy and Daddy wear glasses to help them see. Everybody is different, and our differences make us so much more interesting.



It will take a long time before my girls will be able to fully embrace that idea.

But I know they will. Because it's TRUE!

19 comments:

Anonymous said...

It sounds like Holly and Eden are doing great!!! I can't believe they will be FIVE in 2.5 months...where has the time gone? I've been reading your blog since they were tiny two-year-olds...all grown up! I can't imagine how YOU must feel, Billie! :)

Blessings!

Anonymous said...

thanks for the awesome, specific review of hippotherapy! i have a couple of kids on my caseload for whom i am considering it, and it's so helpful to hear reviews. your girls are amazing! i follow a set of 24WGA-born twins who are a few months older than holland and eden, and one of them has come to a new awareness of his physical disability over the last 6 months, just as you describe with eden. i wonder how it ties into development.
--liz the PT

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Anonymous said...

I'm glad everything is going so well.

Hugs
Lucia

The adoption came through, by the way, and we are meeting our new son tomorrow.
Also, can Eden's Koala be stopped anywhere while lifting, or does it have pre-set points for stopping?

Anonymous said...

Wow! Great post! Beautiful, beautiful girls. You are wonderful parents.

Marley's Mom said...

Hi Billie, I hope you had a wonderful mother's day! Sound like the girls are doing AWESOME! I am so glad to hear the improvement Eden is having with hippotherapy. It would be cool if the girls went at the same time and rode together!
Marley has had great improvement in her trunk strength too. I knew you all would love it as much as we do. We gotta have a girls night out again SOON! Love you guys.

Bird said...

I love this post and am thrilled to hear/see how well they are doing.

Anonymous said...

I must have been 15 before I realised that "picturesque" was pronounced "picture-esk" and not "picture-skew" as my parents were fond of saying. I was furious :/ They swore they thought I knew but it felt like an elaborate practical joke.

My kids are 4 and 2 and I'm teaching them the proper pronunciations for everything from the start.

Kendra Lynn said...

I am so excited to read about the girls' progress! Its amazing how well they are doing...God has certainly blessed you with marvelous girls. :)
And yes, you should start saying "catterkillers" and "wattles". Merry always called movies, "mooies". We still call them that, even though both girls know the proper word. I just love keeping that little bit of baby-ness nearby.
And they call our pastor, "Brudder Smudders". He laughs every time they say his name because its just so cute! Keep them babies as long as you can...trust me on this one.

megan manning said...

Hi! I have been reading for a few months, and just finished reading all of the old entries. I am so glad you are loving the hippotherapy! I teach theraputic horseback riding lessons here in Texas and I see children like Eden come in all the time that after a few months-years they are soooo improves its amazing! Literally I have heard first words, seen first steps, and seen kids that used to be rolled in in wheelchairs run down the barn alley! Its just amazing : )

thanks so much for posting for us to read!

megan

Heather said...

Thanks for the charming post, Billy. I'm part of the CPmoms group--thanks for moderating, by the way--I leave comments from the ID goodnorning2nan. Anne is the name of my Down Syndrome sister and she called herself Nan or Nannie for years. She was a turkey about going to bed for years too. She'd be put to bed around 8:30pm and at 8:35 she'd appear and in her ever sunny way, do a great big yawn and stretch and say "Goodnorning!" This would go on for a the better part of an hour but still, it was endearing. In my family we still say "Goodnorning" and eat 'Muffles" for breakfast. Hold on to it.

abby said...

Hey Billie,

I love your updates on the girls and am so impressed at how far both of them have come (and a bit saddened about Eden's recent self-perception...I know she feels like she has limitations, but what's amazing to me is how without limit her progress has been and how much she has surprised everyone in this respect.

Hallie reminds me in some ways of Holland--the physical issues (Hallie tested as 32% delayed in terms of her physical/gross motor skills) and her attention. I think Holland's language skills (from what I can recall from two summers ago when we met up and your girls were almost 3) were better than Hallie's expressive skills at the now-same age of almost 3).

I was wondering if you had any specific (or even general) recommendations of things that I might do with Hallie, approaches I might take, books I might read etc) to help her hone her skills and overcome or at least mitigate the impact of some of the things that she finds challenging. You and John are two of the most wonderful parents I know and I know that your kids are doing as well as they are because of all of the stuff that you are doing with them, so any tips and/or pointers you might have would be very much appreciated (and I bet by more than just me!)

Thanks!

Abby

Just'N Angel said...

Way to go, Holland and Eden! Keep on growing and learning. I love hearing all the great things you are doing. I love the baby words, too. We still say "Docshter" for doctor and "Base You" for Bless you" years after they learned to say them correctly.

Marilynne said...

I don't know what to say except that your twins have a very special mother.

Laura Gilmour said...

You have two beautiful and smart girls. Eden must be smart to be able to figure out lipreading with no hearing. I learned in one of my ed psych classes that that's pretty much impossible for people who are completely deaf.

My disability mainly affects tha ability to read body language and facial expressions. It is only in the last few years I've learned to recognize facial expressions other than smiles so my world is very much a verbal world. Thus, I picked up on verbal skills very early. I guess with Eden, it's the opposite.

Amy said...

"waiting for the next 'shoe' to drop"...YES. TOTALLY. I am a mom of a 4-yr old with mild CP. I'm waiting too, but hoping that when it does happen, whatever it is will be mild. Hoping the same for you and your girls. Holland and Eden are cuties, and so lucky to have such supportive parents!

liz.mccarthy said...

OK, you didn't CALL me while you were In California??

Nice catching up with you on the phone tonight WISH it was for better reasons! Glad you got to "talk" to Katilyn, she's normally a big phone talker!

Billie said...

Liz, I was in So Cal, or I def would have called!

Rebekah said...

I love this update. It is great to hear about your girls and how far they have come. Yay!