Monday, March 31, 2008

Has Anyone Seen My Kids?

I swear they were here a minute ago...

Oh wait...There they are!!!

Wednesday, March 26, 2008

March for Babies 2008

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?

Sunday, March 23, 2008

Tuesday, March 18, 2008

Ha, Ha, Ha

Monday, March 17, 2008

Not Medically Necessary

"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!

Friday, March 14, 2008

Girls Rule!

Monday, March 10, 2008

High Expectations

I didn't go to preschool. Neither did any of my siblings, and neither did John or any of his siblings. We both had stay-at-home moms, and older siblings to teach us, and we did pretty well for ourselves. Based on MY personal life experiences, the whole preschool thing is overrated. There is a lot of learning to be done, and a lot of fun to be had, at home. It IS possible to prepare your child for kindergarten at home. Or is it???

Kindergarten has certainly changed since I was there, about 26 years ago. Kids are expected to know a LOT more on their first day of school than I was. They should know their letters and sounds, how to spell their name, count, color in the lines, cut, and even write most of their letters, numbers, and name. By the end of kindergarten, they should be able to read and do simple math. If the aren't doing these things, they will be referred to me (the school psychologist) and someone will wonder if they have a learning disability.

I think it's crazy. In our district, the birthday cutoff for school entry is December 1st. That means we have a good number of kids starting kindergarten at age 4. Really? Are kids developmentally ready to read and write when they are FOUR? I don't think so. There are a lot of kids out there that we are setting up for failure with such an accelerated curriculum at such an early age. We're trying to make them grow up too fast!

Which brings me to my point. We have a meet-and-greet tomorrow night with the preschool that Holland and Eden will be attending in the fall. My babies. They are making me send them to SCHOOL!!! Can you believe that?

Quite honestly, there are some people who thought they should have been in school this year, but I chose to keep them home an extra year for a number of reasons, the most important of which was/is their health. They are sick enough without being in the cesspool of germs that is school. Getting sick is such a huge setback for us in so many ways, especially in terms of eating and physical development.

But now I get it. Okay, okay. They are turning four this summer, and it is time for school. I may still not be ready, but they are.

The decisions involved have been causing me mega stress and I have done a great deal of soul-searching. Should Eden go to a special ed preschool? Should Holland? Should I look into the hearing impaired preschool program again? Should I split them up or keep them together? Should Eden have an aide? Should they ride the bus? How will Eden get around? Where will she sit? What is the best way to make sure she is fully included? The list goes on and on.

I have made a decision, and I am finally feeling pretty good about it. I hope that tomorrow goes okay so I can let my mind rest a bit.

Both girls are going to attend a regular preschool program through our local school district for four-year-olds who are considered "at-risk." Their prematurity alone is enough to qualify them, but realistically we meet several of the criteria (low birth weight, "nutritionally deficient," chronic medical get the picture). I like this option because there will (hopefully) be a good combination of kids with and without disabilities, and I can keep them in the same class.

I really don't want to have them in separate buildings, for both social/emotional and logistical reasons. I don't see any reason to have Holland in a special education setting. Her only limitations at this point are fine and gross motor delays and small stature. Her language skills are certainly age-appropriate and she is very social. I think she will respond well to some structure and being in a classroom will help develop her ability to listen and follow directions (definitely her weaknesses). She is able to listen and follow directions now, but at times she certainly has her own agenda. She is going to love school.

With Eden, my decision gets a little more complicated. I think she can be successful in a general education setting, but her success is going to depend on how motivated the staff is to making it work and working with us. Physically, she will need an aide to help transfer between equipment (from walker and/or wheelchair to chair and potty, etc), and to make sure her cochlear implant processor is always working. Her language skills are also significantly delayed (more like a 2-3 year old than a 3-4 year old), so she needs kind and compassionate teachers who will take the time to slow down, explain, and most of all, listen. Her skills are REALLY coming along, but if there is too much going on and everything is too fast-paced, she will tend to get lost in the shuffle.

Eden learns best from watching and listening. I see her all the time watching Holland, and modeling her. I also see this in her little speech group at school. She takes cues from the other kids and will often call out answers that she hears from them. This is my number one reason for opting for the general education preschool setting. I want her to be in an environment with other children who have good language skills, because I think she will be able to learn from them just as she has from Holland and her cousins. In the hearing impaired classroom, or the ECDD (Early Childhood Developmental Delay) classroom, most of the kids are limited in their language. Add to that the fact that the ECDD placement is cross-categorical, and can also include kiddos with really significant behavioral concerns, I just don't think it's the best place for her.

In addition to that, I have decided that I want to establish high expectations from the very beginning. With my background, I have had the opportunity to observe MANY special education classrooms, and across the board they have notoriously low expectations for children with disabilities. The push for "inclusion" across the country is founded partly on this. I want everyone to know from the beginning, that I expect Eden to do great things. She is going to learn to read, she is going to learn to write, she is going to play and learn and grow just like any other child. She is going to have weaknesses, but she will also have many, many strengths. That's where I want the focus to be.

Eden is going to have an aide to help her navigate the school environment physically. She will also have speech and OT at school, and we'll consult with the county's assistive technology and hearing impaired programs. Both girls will go for school-based PT at another building (where they go currently), outside of school time. They will also continue with their private therapies.

They will be going 4 days a week, 3 hours a day. I'm still unsure about the bus. It really depends on IF and WHEN we get her power chair, and IF and WHEN she can learn to use it well enough for school. Most likely, she will use her pony walker at school most of the time, with adaptive seating for centers and floor activities. If we only have to transport the pony walker, I may just end up driving her. I'm not so sure I am ready to put them on a BUS anyway!

Aside from making the big decisions, and planning how to make it work logistically, I am just a total wreck about preschool. I wish I could just keep them here with me in our little nest of love and security forever. I know things will be tough for them, and for us, all along the way, but I hope the world will be kind to them and they will find goodness out there. And when things aren't so good, I hope the fierceness and intensity of my love for them will be enough to see us through.

Tuesday, March 04, 2008

Mission BGB Accomplished!

We've got three night under our belts with no problems at all! Eden is definitely back on track in terms of sleeping AND eating. Now if we could only get a good stretch of healthiness. Unfortunately Holland has been stuffy again for the past 4-5 days and is needing treatments at night when she wakes up coughing. Blech. TGIMarch. You know, in like a lion, out like a lamb...or so they say.