Micro Preemie Twins: The Story of Holland & Eden

A Motley Crew

2008-07-03T22:49:00.006-04:00

Holland had an eye doctor appointment last week. Good news is that her vision has not gotten any worse. Bad news is that there hasn't been any improvement in her left eye over the past couple of months. She is basically not using that eye to see when she does not have her patch on. Soooo. We are now patching 6 hours a day (up from 2, then 3-4), which is why you see her wearing the patch in so many of the recent pictures. 6 hours a day is the maximum amount that you can patch and continue to see benefits. We're going to see how it goes for another 2 months, then see the doctor again.

The even worse news is that we are very likely looking at another surgery. Not only is her left eye continuing to turn in, her eyes also roll too far to the sides and up and down when she is moving them. This is apparently a common problem that goes along with strabismus, and also has to do with the eye muscles. If and when she has the surgery, we would hopefully try to correct muscle balance issues in both eyes.

The trick is to try to improve the vision in her left eye as much as possible before doing the surgery. If the vision in that eye continues to be poor, there is a risk that even with surgery to realign the eyes, she will continue to neglect using it and we won't have as good of an outcome from the surgery.

We are very lucky that little Holland is a pretty rules-oriented person. The rule is that we put her patch on before breakfast, and she has to keep it on until one of us tells her it is okay to take it off. Rarely, she will ask to take it off early, but most of the time it doesn't seem to bother her at all and she forgets about it until we tell her she can take it off.

Boy, 6 hours is a long time though. We used to be able to take it off before we went out. Now she has to wear it, and it just adds to our motley crew image. Holland with her eye patch, glasses, orthotics, scabby knees, and crazy unbalanced gait, and Eden with her pony walker or wheelchair, cochlear implant, and orthotics. You should see some of the looks we get... Of course, any seasoned micropreemie parent could spot us a mile away! We don't care though. We smile and sing and chat as we continue on our merry way.

That's just how we roll.

She's Got Power!

2008-06-30T23:10:00.004-04:00

More than 8 months after beginning the process, we finally have it! The Taj Mahal of motorized pediatric wheelchairs. It's a Koala by Permobil, and it's PINK! Eden has big plans for adding princess decals, and already calls it her "princess wheelchair."

Considering that she has a difficult time making her body do what she wants it to do, she has a real knack for figuring out how to make things GO. The power chair is no different. She figured out how to get it moving in no time, and was flying over our very bumpy backyard with glee as soon as we got it home.

It makes me so happy to see her able to "run" around on the lawn with the rest of us.

Congratulations Eden! You are a Princess with Power!

A Gaggle of Girls

2008-06-26T23:45:00.003-04:00

These pictures are of Holland and Eden with my sister Melissa's girls, Jenna, Claire, and Kate.

Seriously. Have you ever seen such a ridiculously beautiful group of little girls?

The Holland and Eden Show

2008-06-24T10:16:00.001-04:00

Happy Father's Day 2008

2008-06-16T16:14:00.004-04:00

I almost forgot! We had a big storm yesterday and lost power for about 24 hours, so I didn't get a chance to put up a Father's Day post.

Happy Father's Day to the world's most awesomest Daddy! Thank you so much for taking such good care of us, and for loving us so completely.

The shirt says it all!

Looking Forward

2008-06-16T13:06:00.004-04:00

Wow, I've been a really bad blogger lately, haven't I? Life has been carrying on, pretty much business as usual. Last Wednesday was my last day of work for the summer, so I was pretty busy leading up to that with tons of last minute testing and paperwork. The girls were also sick with a pretty nasty cold-like virus that lasted about 10 days and were needing lots of breathing treatments. They are much better now, and we're quite happy to have made it through another illness with no hospitalizations! Wouldn't it be great if that whole sick=hospital thing were a thing of the past?

We had the girls IEPs the end of last month, and they went pretty well. The only semi-glitch has been with the county's hearing impaired program, and I don't think I can really call it a glitch. Last year they wrote a dissenting opinion to the IEP because they thought I should send Eden to their preschool. This year they were vocal in voicing their opinion again, though not with an official dissent. I think they make some good points, and certainly there are many good things about their hearing impaired program. However, as anyone who knows me knows, I have explored and questioned and considered every option, and when I look at EDEN, and at the BIG picture, I feel like we are making the right decision.

My reasons for NOT choosing the hearing impaired preschool for Eden are numerous. Logistically it does not work because it would be 30-60 minutes on the bus each way, it is 5 days a week, it is only offered for a morning session making breakfast and lunch difficult if not impossible to work out, and Holland could not go to the same school. For those reasons alone it is not an option. Add to that the fact that the auditory-verbal therapy center that we have taken Eden to for follow-up has recommended that she be fully included in a "normal" speaking/listening environment, with children developing "normal" speech and language to maximize her use of the cochlear implant, and our decision becomes even easier. Of course, that whole piece is more controversial, and open to interpretation, so there are politics involved. It doesn't seem to matter how well-set I am in what I want to happen with an IEP, it is always difficult to hear a dissenting opinion, and have my judgment questioned with regards to what is right for my child and my family, so even after all my preparation I left the meeting in tears. IEPs just suck, no matter how you look at it.

Anyhow... Holland and Eden will be attending a PLUS preschool in the fall in our school district. The PLUS preschool is a general education setting for children identified as "at-risk." Our school district has a grant which allows for an "inclusion" piece to the program. Each classroom has space for 4 children with IEPs, and is staffed with a full time special education teacher and aide, in addition to a gen ed teacher and aide. Parents are asked to volunteer once a month (do you think I can do twice a month since I have two kids?), and Eden will have a full time aide to assist with her physical needs. She'll also get PT/OT/ST/HI services, and Holland will get PT/OT, both mostly on a consultant basis rather than direct service.

We have visited the program for an open-house, and have met most of the staff. It seems like a perfect fit. They are already in love with the girls, and seem very open and willing to work with us. Although it will be hard for me to let them go, I know Holland and Eden are going to love it and it will be good for everyone. Still...nothing is set in stone. I can change my mind, I can make mistakes, I can reopen the IEP, I can pull them out of school and keep them safe at home with me for the next 2 years if I really want to. So there!

In other, more fun news, we have lots of great plans for the summer. We are leaving Thursday for a mini-trip to Chicago. The girls are totally OBSESSED with trains right now, so we are taking the train, staying two nights, and hitting Shedd Aquarium. Our major big-time super gigantic adventure this summer will be to Disneyworld for the girls birthday!!! We have our airplane tickets and they girls are talking every day about what we will do while we are there...visit Ariel in her "grotto," have breakfast with princesses, have dinner with Mickey, see Handy Manny and "say hi to tools," see Cinderella's castle, and watch the fireworks, etc. We are all very excited.

Eden is my princess girl, with her princess shoes, princess bathing suit, and princess bell on her walker. Her number one video request is for "princesses," she knows all of their names, and her favorite color is pink. Holland likes princesses too, but she is more of a Mickey Mouse Clubhouse kinda girl. Even more than that she loves Thomas the Tank Engine, and her favorite color is blue. Did you know that you can't buy a Mickey Mouse or Thomas bathing suit for a girl? That bugs me.

We just finished an 8-week parent/tot swim class at a therapy pool nearby. Two of Holland and Eden's cousins and one of our good friends swam with us and we had a great time. My girls both LOVE to swim, and we look forward to a lot more water time this summer. We're also looking into horseback riding. I found a t-ball team for kids with special needs, and we are totally THERE next spring. Eden will have her power chair by then, which will be perfect for running bases. We're hoping to have power wheels by the end of the month...I guess I'll believe it when I see it.

I just read back through this post, and boy it is kind of random. But, that is where we are right now, and it's kind of hard to write a cohesive post with a little girl on your lap pushing buttons:) So, this is from Eden:
eeeeeeeeeet,hteyik.i jp ;or kut[yl'po
i]=
l[oy]o[lo][l[]poy] oi[kp
mn
s

How much do we love summer?

2008-06-07T23:18:00.001-04:00

This much!

Go Fly A Kite

2008-06-01T02:21:00.003-04:00

This is a new favorite activity for all of us, but especially for Eden. She's been talking about it for weeks. If you ask her what we did at the park she says, "fly a kite." "Holland go, Daddy go, Mommy go, and me." "I do all by myself." "Elmo kite, and Cookie, and Big Bird, and Abby Cadabby." "It was fun."

I just love that kid.

Way to Go Holland!!!

2008-05-26T00:16:00.001-04:00

Happiness is...

2008-05-22T17:47:00.004-04:00

...when Holland and Eden can sit together in the shopping cart at Target.

Really. You have no idea how happy this makes me. Eden can finally do it!

Hooray for the little things:)

Rejuvenated

2008-05-15T17:30:00.003-04:00

I'm home! I returned Monday evening from my second annual girls' trip with my homies, a 5 day, 4 night trip to sunny California. We started the trip in L.A., drove to Palm Springs for 2 night, than back to L.A. Palm Springs, being in the desert, was HOT and SUNNY every day. Just perfect for what I wanted to do...sit by the pool reading trashy magazines while sipping Mai Tais. It was great. Just what I needed to remember myself and spend some time with a few of my elementary and junior high school girlfriends who have known me since way back when, and have always been there for me, even when they are far away.

I love you girls!

John, thank you so much for being the kind of dad that I can leave home with the girls and not have to worry for one second that they won't be well taken care of and have tons of fun! You rock!

Now we're back to reality big time, preparing for a preschool evaluation today, Eden's IEP tomorrow, and Holland's IEP next Thursday... Fun times.

Happy Mother's Day, MOM!

2008-05-11T23:51:00.003-04:00

Can't wait for you to come home :)

We love you!

Can You Hear Me Now?

2008-05-04T22:17:00.002-04:00

My mom and I took the girls to their first dentist appointment a few weeks back. It went great, no cavities, nice clean teeth, and REALLY good behavior. Surprisingly good, actually. A few tears from Eden in the beginning, but once she figured out that she got a new toothbrush and a prize from the box, she was cool with it. I was proud of them. The best part of the visit however, was a little conversation that took place in the waiting room...

Holland approached a little girl, about four years old, and said, "hi, I'm Holland, what's your name? Do you want to play with me?" The girl did not respond. Holland tried a couple more times, but the girl didn't answer, and eventually got up and walked away. My mom says to Holland, "I don't think she heard you." And Holland, in her sweet little inquisitive voice responds, "she doesn't have her headband on?"

Taggedy Tag

2008-05-01T11:40:00.004-04:00

My friend and former college roomie Kris, and fellow preemie twin/CP Mom Melissa, tagged me to do the 7 Random Facts thingy. I've done something similar before, but hey, I can always think of more weird or random things about me:)

Here are the rules:

1. Once you are tagged, link back to the person who tagged you.

2. Post THE RULES on your blog.

3. Post 7 weird or random facts about yourself on your blog.

4. Tag 7 people and link to them.

5. Comment on their blog to let them know they have been tagged.

Random Facts About Me:

1. I took piano lessons for 6 years (age 9 until about 14), and 6 years of Spanish classes (7th grade through sophomore year of college, on and off). I was no prodigy, but pretty good at both. I also played the violin and flute for a while, and played 2 years in my high school band.

2. I am addicted to Tim Horton's french vanilla cappuccino. In the summer I switch it up with the iced cappuccino. Yum. My favorite beer is Blue Moon, and favorite mixed drink is the vodka tonic. Favorite shot is the lemon drop, you know, sugar, vodka shot, lemon. There are a lot of lemon drops in my past. Now it's a once or twice a year kinda thing:)

3. My mom and aunt teach a "quilt-in-a-day" class several times a year. It's a ALL DAY thing, from 8am until 11pm, and I am pretty obsessed with HAVING to finish my quilt in a day, because I know if I don't, I never will. I have made, hmmm, 5 or 6 quilts in a day. The only one that took longer was my king-sized bedspread. I made that one before I was pregnant with the girls. With the exception of being able to sew a straight line, I don't consider myself very crafty at all.

4. I hate to cook. I can make a few things quite well, including spaghetti, burritos, and chili, and while they all taste yummy, I have to admit that seasonings and sauces almost always come out of a package. Someone asked once for my spaghetti sauce recipe...well here it is: Brown ground beef, add some garlic, onion, salt, and pepper, open can of Prego and pour in, mix. To add calories for the girls, I add a pat of butter and some parmesean cheese, and voila. Hey, my kids like it.

5. Before kids, I was really interested in midwifery, and did training as a volunteer birth doula. I attended one birth as a volunteer, in addition to being at the births of my sister's three girls. After my pregnancy, and the drama that ensued with their birth, I've lost interest in it. I wonder if I will ever do it again. On the one hand I still marvel at the wonder of "natural" uncomplicated pregnancy and birth, on the other hand it's still kinda emotionally painful to see others experiencing what I will never have. I wish it wasn't, but it is.

(My lack of interest is solely for volunteer doula-ing. I am still highly interested in attending the births of my family and close friends. Feel free to invite me. Hint, hint.)

6. I am NOT a morning person. If given the option, I would go to bed around 1am and sleep until noon. I can nap any time of day and still sleep soundly at night. I love to sleep. Holland is the oddball in our family. She pops up out of bed at 8ish bright-eyed and bushy-tailed. When I have to wake her up earlier, she is just as cheerful. Eden, on the other hand, is more like us. It's hard to get her up in the morning. On days I work, she'll sleep right through a diaper change, getting her coat on, and loaded in the car, and won't wake up until I am getting her out at my mom's. She'll sleep until noon if I'd let her. On lazy weekends, I can get her up at 11, put her in bed with John, and they will both sleep until noon together. The only person who is LESS of a morning person than me is DADDY.

7. I love real life crime stories. I have read books about the OJ Simpson trial, Scott Peterson, Jeffrey Dahmer, Charles Manson. I also watch those true crime stories on TV. I don't know why I find it so interesting. I guess it's the psychologist in me. I like to ponder what makes people do the things they do. Serial killers just fascinate me, what can I say?

There! How's that? Now you more about me than you ever cared to know! My 7 people will be Donnie, Allison, Shannon, Kristin, Jacolyn, Melanie, and Angela. Do it if you'd like. I, for one, would love to know more about you:)

Thank You!

2008-04-27T22:07:00.002-04:00

March for Babies!

2008-04-21T23:41:00.005-04:00

Thank you SO MUCH to all of you who have already donated to support Team Holland and Eden as we walk to raise money for the March of Dimes! You guys ROCK!

The walk is just FIVE days away, and we've still got a long way to go to reach our goal. So please, help us out... Not only would it make ME so happy, your donation will be used by the March of Dimes to help fund research targeted at prevention of premature birth, and toward improving the care and long term outcomes for premature babies in the future.

If you are interested in joining us, you can sign up at the donation page. Details are available there as well, in regards to date, time, and place. If you are a blog reader, please stop by and introduce yourself! You won't be able to miss us:) We love meeting our preemie friends!

Life of the Party

2008-04-21T22:05:00.003-04:00

Prematurity sucks. That's the bottom line. I wonder sometimes if I will ever get over it. I want to. I really do. But the fact of the matter is that I am faced with constant reminders of their traumatic birth.

orthotics...eye patches...reflux medication...breathing treatments...vomit...poor feeding...poor weight gain...IEPs...physical therapy...occupational therapy...cochlear implant equipment and batteries...low muscle tone...high muscle tone...walker...wheelchairs...appointments and opinions.

It's hard to relax and enjoy life with your family when there is so much to worry about. Sometimes I feel like it is getting better. Then I have days like I had this weekend that remind me how far from "normal" my life truly is.

I went to a family party. It was my beautiful niece's 2nd birthday, and my sister had us over with a group of her neighborhood friends. It's not that it wasn't a great party, and it wasn't that I didn't have a good time. I did. It's just that, for whatever reason, it hit me how much our lives are different from everyone else's.

The other parents sat around in the front yard and had a few beers. The kids ran off in different directions, to play on their bikes and scooters and cars, to climb on the jungle gym. You know, the usual. Some moms helped their kids get a plate of food, then helped themselves while their kids sat and ate.

That's what I want. I want to be one of those moms. I want to sit on the bench at the park chatting with the neighborhood moms while my kids run and climb and slide. I want to hand them a hot dog or an ice cream cone to eat while I finish my plate. I want to help the women preparing food and cleaning up in the kitchen while the kids play in the other room. I miss those simple things.

Instead I hold Holland's hand as she climbs the stairs to the deck over and over. John and I take turns pushing them on the swings, helping them climb on the jungle gym. I sit on the floor of the play room handing Eden the toys she cannot reach, and making sure none of the other kids trip over her as she lays on the floor. I strap her chair onto the car so she can have a turn taking a ride. I make their plates, and John and I sit, each with one, to feed them every single bite long after everyone else is done eating. He cleans up Eden's vomit and changes her clothes. I drive home listening to Holland coughing, just wishing we were there already so she could have a treatment. We take turns giving breathing treatments every few hours through the night, wondering if we need to make yet another trip to the ER. The same thing happens the following night, then Eden's nose starts running too. It never ends.

It's very isolating, this life. I am surrounded by the most incredible, supportive and loving family and friends, but still I feel lonely and often disconnected. I am sure some of it is my doing...maybe most of it. But I'm am also sure, to a certain extent, that it just comes with the territory.

The Possibilities are Endless

2008-04-11T15:45:00.007-04:00

Eden has a lot going on lately. You know, a day in the life of a 3 1/2 year old (who happens to have Cerebral Palsy)...busy, busy, busy. This morning we had our first meeting with the multidisciplinary clinic at the Program for Exceptional Families in our area. Eden's physical medicine doctor oversees this program, and we decided to give it a go. The appointment lasted for over three hours, as we rotated through five teams of specialists, including the doctor, nurse, PT, OT, speech therapist, orthotist, equipment supplier, and social worker. There are usually a neuropsychologist and a nutritionist there as well, but they were out today.

Let me first say that I was (not unusually) anxious about this appointment in the days leading up to it. Eden has NOT been eating great for the past two months. She has been sick A LOT, and has had an accompanying and predictable increase in reflux, vomiting, and general grumpiness about eating. Her weight has leveled off since the end of January, losing a little in February, then gaining it back, then kinda hovering up and down through March. I started ruminating about weight gain and eating and reflux this past week, and was convinced that the doctor would mention the dreaded t-word. BUT, I can happily and with great relief report that it did not come up. She has gained about 3 pounds since her last visit 6 months ago, as well as a couple of inches in length. She is on the chart in length for a "normal" 3-year-old, and is getting *closer* in weight. Her BMI is also *closer* than ever before to "normal." If you chart her on the CP growth chart, she is above the 10th percentile in weight, and close to the 50th in length. So, okay Billie. Take a deep breath, and RELAX...

Still, I must insert a small rant here... Feeding these kids is the bain of my existence. I hate it. It sucks. So there!

All in all, it was a great appointment. Everyone seemed to really listen to our concerns, and it was nice to have everyone on the same page. The team will meet together within the next week and will write up a report and a treatment plan for the next six months and send it to us. If you have a child with different/special/unique (whatever) needs, you know that coordination between specialists can be a real pain in the rear, so in many ways this approach was a breath of fresh air.

The most significant changes, or tweaks, to our current plan that came out of this appointment were:
1. Increase dosage of reflux meds from 15mg of Prevacid daily to 30mg.
2. Reinstate use of Periactin as appetite stimulant (we had some concerns that this med might be causing Eden's respiratory viruses to become worse, but this doctor doesn't feel this is the issue)
3. Think about private speech and feeding therapy with the therapist at this clinic.
4. Get hip x-rays to use as baseline. There is some concern about left hip socket and shorter length of right leg.

We are also going to look into hippotherapy (therapy on horses), swim classes, and Euro-Peds or Conductive Education this summer. The E-P or CE will depend on whether we can manage, without significant disruption to our overall happiness and emotional well-being, to fit it into our schedule. It is all a delicate balance.

In addition to our big appointment, we have a boatload of new equipment that I wanted to review here, and share my thoughts on.

First off we have the new Columbia High-Back Wrap Around Bath Seat with an abductor. At first I thought this seat wasn't going to work. We put the abductor in as far as it went, and tried it out, but Eden was still scooching her bum all the way forward and ending up with a very rounded back in the tub. As with most equipment, we made a few tweaks of our own including drilling another hole to move the abductor further in (thanks Papa!), and fastening the mesh seat bottom to the back of the chair so it wouldn't slide forward, and voila! Now it is working out fabulously.

We were extremely picky about the bath seat for several reasons. First, we didn't want it so huge and cumbersome that Holland couldn't take a bath at the same time. Second, it had to be all the way down in the water or Eden would be forever lurching out of it. She LOVES water, the more the better, and is not content unless fully submerged. Lastly, it could not be reclining in any way. A lot of the bath seats out there recline slightly, and while Eden could probably use the support, she WILL NOT lay back, and spends the entire time trying to sit up, which ends up as a total struggle. I was very sure that we would never find anything to work for her, and am pleasantly surprised with how well this seat is working out. It's a little tricky getting her bum clean, but we improvise and get the job done.

The Special Tomato Multi-Positional Seating System came in as well. The jury is still out on exactly how well this one is going to work out for us. For one, part of my semi-numb brain didn't process exactly what we were getting, and I half-thought that we were getting the Special Tomato Floor Sitter, which would replace the Tumbleforms Feeder Seat that we are currently using. At the same time, I KNEW that the chair we were getting was the one that had foot-plates and could double as a car seat, which the floor sitter does not.

On the pro side, Eden sits fabulously in this chair. It is very supportive and seems extremely comfortable for her. She likes sitting in it, and it works well as a seat for writing or coloring, doing projects, and eating snacks. It is soft, the desk has a grippy surface so things don't slide off easily, it is easily adjustable and will grow with her for a long time. On the downside, it is HUGE, takes up a lot of space and is HEAVY, so not very portable at all. We have the wheeled base, and the PT mentioned looking into the stroller option, but I think we might wait to see how useful it will turn out to be.

Another major development in our household...we've gotten ahold of a little Quickie manual wheelchair, and Eden can DO IT!!! Back story... On Monday at school we ran into a little boy with Spina Bifida using this tiny little manual wheelchair. He was awesome, could get himself in and out of the chair and was very proficient at getting around with it, even doing some cool tricks:) I had an AH HA moment as soon as I laid eyes on this little chair and HAD to try it. I asked the little boy if Eden could sit in his chair, and he was very happy to let her try it out. Eden sat in it beautifully and her little eyes lit up. We didn't try moving it that day, but I was sure she could do it, given how well she has been moving her Rifton Dynamic Stander lately. On the way out I mentioned it to the OT, who said she thought they might be able to get ahold of one for Eden to try.

On Wednesday I got a call that they had one, and on Thursday we got to try it out at PT. It was all so very exciting, because of course, little Eden knew just what to do when she got in it, and very happily started rolling herself down the hallway at school. She quickly learned to back up, turn both ways, and spin around, as well as go forward. We were all so excited and her speech teacher even got a little teary.

We brought the chair home yesterday, and she has already spent several hours in it. She LOVES it, asks for it, and wants to show it off. Possible down side...she won't go in her pony at all. "I don't want walker...I want WHEELCHAIR!" I'm hoping that the novelty will wear off and eventually she will use both equally well. I see this chair as a really functional way for her to move around in small areas, like home, school, other people's houses, and even at the store when Holland is walking for quick trips. The power chair will still be more functional in the long run with big trips, like to the Zoo or an amusement park or the mall. The power chair has the lift feature, which will be awesome in allowing her to lift up to sit at the table at, say, a restaurant. But the manual chair will be SO MUCH more easily transported for smaller trips. It also has a push bar to use if she is tired or can't keep up. Very handy. It still needs some tweaking (what doesn't?) to move the lateral pads in, and to keep her feet in place, but overall it is in excellent shape and fits her well.

I am super excited about the manual chair for purposes of building upper body strength (MAJOR bonus), and working with both hands bilaterally (good brain exercise). So whoo hoo for the possibilities!

If you made it this far, you must really love us, so please click here and go support Team Holland and Eden as we walk to help save babies! The walk is two weeks from tomorrow, and we still have a loooong way to go. If everyone reading would give just $5 we could surpass our goal in no time:) Please help us to be the #1 Family Team for the third year in a row!

Never the Same

2008-04-09T12:47:00.002-04:00

My Daughters Are Fine, but I’ll Never Be the Same

This article was posted on the Preemie Blog Moms group, and I really found it relevant to the micropreemie experience. It made me cry. But then again, what doesn't?

And just in case it makes you cry too, here's a little something to lift your spirits...

Good News All Around!

2008-04-03T18:53:00.005-04:00

"We have reviewed a request to reconsider the decision not to authorize the above service. We are pleased to inform you that (medical insurance) has reversed the original decision not to authorize services."

In other words, we have approval for power wheels!!!!!!!!!!! Yippee!!!!!!!

I take back everything negative I said about them. Weelllll okay...maybe not everything:)

I also got a report in the mail today from Eden's speech and language evaluation, done 2 years post cochlear implant, at the center where she got her implant. The scores themselves are somewhat hard to swallow, especially since I am a school psychologist and standard scores are what I do. The thing is, ALL the tests are normed on kids with no hearing loss or physical limitations. I KNOW this logically, but still...she's significantly below average in terms of scores. On the very bright side, the report summarized the examiners impressions like this:

"Eden is successfully using her cochlear implant to develop spoken language. Her progress continues to be steady. The effects of cerebral palsy impact her breath support for speech; however, marked gains have been made in this area. Eden's performance is in keeping with what this center typically sees from a good cochlear implant user 24 months after activation when no disability is present."

Did you catch that? Her performance is TYPICAL for GOOD CI users 2-years post implant. I am so proud. Clearly, she is brilliant, and beautiful to boot.

Her sister isn't bad either!

Don't forget to support Team Holland and Eden!

Has Anyone Seen My Kids?

2008-03-31T14:40:00.003-04:00

I swear they were here a minute ago...

Oh wait...There they are!!!

March for Babies 2008

2008-03-26T22:39:00.003-04:00

Well, here it is! It's that time of the year again, and we are looking forward to this being our best March for Babies (aka WalkAmerica) ever! We have set a lofty goal, hoping that we will be able to at least match, if not surpass last years total ($4,396.00).

Please consider supporting Team Holland and Eden in raising money for the March of Dimes. The March of Dimes leading the way in raising prematurity awareness, and in funding research aimed at prevention and treatment for babies born too soon. They have done so much already, and Holland and Eden's survival was partly due to advances in medicine made possible by the M of D.

There is, however, still so much more work that needs to be done. In this country, 120,000 babies are born prematurely every year and of those that do survive, many, including my darling girls, do so with lifelong disabilities.

Prematurity has changed my life in countless ways, some good and some bad. One of the most positive impacts that the girls' premature birth has had is instilling in me the need to DO SOMETHING to help other families in my situation. I have chosen to keep my blog, volunteer as a leader in our NICU family advisory board, and to walk for the past three years in the March for Babies to do my part. It isn't enough, but I am glad that the March of Dimes has given me the opportunity to feel like I can make a difference.

You can do your part too, by donating to this important cause that is close to my heart. Your donations, in honor of Holland and Eden, really mean so much to us!

Why do we walk?

Hoppy Easter!

2008-03-23T22:52:00.003-04:00

Ha, Ha, Ha

2008-03-18T22:59:00.001-04:00

Not Medically Necessary

2008-03-17T12:25:00.003-04:00

"This is a request for a motorized wheelchair for a 3 year old child with cerebral palsy, failure to thrive, chronic lung disease, and hearing impairment. She has very low muscle tone in the neck and trunk and increased tone in her extremities. She has had 3 single trials in three different wheelchairs and proved she is successful in driving and demonstrated understanding of tilting herself and using controls. A motorized wheelchair cannot be approved as medically necessary per health plan policy guidelines, as there is no documentation that "the child has demonstrated the ability to safely and effectively operate a motorized wheelchair during a two month trial rental period, AND as a result of the two-month trial there must be evidence that the use of the motorized wheelchair has enhanced the child's overall development including such things as cognitive abilities, directionality, spatial perception, and social skills such as independence and self-concept."

The list of expletives that come to mind after reading this are not appropriate for the blog. I can think of a whole list of "not medically necessary" things that they can shove up their collective...wait, I was trying not to use inappropriate language wasn't I?

I had heard through the equipment supplier, that the claim had been denied by our insurance company because they wanted us to do a two-month in home trial, and the lucky thing is that we actually DID do an in-home trial. This really was LUCKY because we had no idea the insurance would come back with this, and we only got the loaner chair through a twist of fate and the kindness of a few people we were working with. The claim has been resubmitted with the two-month trial information, so we'll see what happens.

Talking to the nice person from wheelchair seating, and seeing the denial in black in white from the insurance company, have proved to be two very different experiences. I guess it's just hard for me to see this beautiful child...

reduced to a number and a laundry list of impairments. Failure to thrive? That all depends on how you define THRIVE!