Who is the Therapy Really For

After an hour and a half of OT today, I was ready for a nap. I don't know about Adeline, but it wore me out. Don't get me wrong, our OT is fabulous. But what it takes to get the Belle, to feel right in this world, goes against my every sensory need.

Today was pudding. Working on combing the powder and milk with her hands was a challenge. Eventually, she warmed up and was thrilled to have Miss Dot hide objects that Adeline had to dig for. Needless to say a bath was necessary, really for both of us. I was sweating bullets watching the whole thing.

In the end I try to remind myself that this therapy has gotten Adeline to the top, if not over, the art hump. If given the time and attention she needs to warm up to an art activity, Adeline will happily participate. OT has also helped Adeline become comfortable in grass and mulch. She still won't do it barefoot but walking across our yard is something she will do with shoes on. Adeline is getting better with loud noises and lawn mowers. Just yesterday I brought the blender in from out of the garage. I might get away with blending in my own house! Clearly Adeline is making progress. I don't see much progress on my front though. The mess still stresses me out.

Interior Design, I Think NOT! Architect, I Think YES!

Savannah is getting older. With that comes an independent mind. What I think doesn't necessarily get adopted as quickly as it once did. Many of you know that I am pretty big neat freak. I try very hard to "let it go" but am still pretty neat. Savannah thinks she is neat. She loves order. She folds her clothes and reorganizes her drawers, lines everything up in her art desk and will even try to clean up my bathroom from time to time (it is the one room where I truly "let it go.")

Lately, Savannah has been decorating her room. She used to do this before her weekly playdates but now, it seems like an everyday occurrence. My girl can get lost up in her room for hours and when I open her door, I have to plaster on the smile as I am always greeted with, "Look how I decorated my room Mommy!" It takes everything in me to not maker her put it all away. Instead, I try and let her express her individuality and hope she doesn't become the old lady that owns 20 cats and can't find the front door through her horded piles of junk. My relief comes twice a month when I take a bucket and remove it all for the cleaners. Savannah and I both end up rather giddy. I am happy that it is gone, she is excited at the prospect of redecorating it all over again.

Note that the tape is tipped on its side for added appeal.

I personally think she should put her energy into building. One day she took cardboard lid, computer paper, scissors and glue stick up on the island for a couple of hours. Come to find out she made a reinforced bed (headboard and all), table and surfboard for the girls' Sesame Street characters. She told me, "Now we can start working on pretend play with the girls mommy." That's my Savannah.

Although the craftsmanship doesn't translate, I thought I would include some pictures.

Quiet is Never good

Potty Trained

Since I haven't gotten around to posting Lila Grace's big milestone, I will slip it in here. I want to at least document it so I can look back and know how young she was when she gave up the diapers. I am sure I will turn into every other grandparent out there and have a selective memory, meaning only good ones that are a bit inflated. When Lila Grace comes to me frustrated about potty training her own children, I can look back here and tell her that it took three tries and that the third one was successful at 2.5 years old - 2 years 9 months to be exact.

I posted previously about trying to train Lila and never mentioned that after April's attempt, she remained in Pull-ups. Not my intention but just how things worked out. She would go to the potty here and there but the Pull-up was always wet. It managed to get drier and drier over time and Lila started making quick pit stops on the potty. This encouraged me to toss the Pull-ups and break out the big girl panties for good.

Surprisingly. . . Lila went one full week without an accident. She did mark the end of that week in a crying fit while in Time Out. Who knew she was crying because she had to go potty and not that she was generally angry. She peed on the floor but was really upset by it and now knows she can sneak to the potty if need be, even when in Time Out.

So there you have it, potty trained and accident free before three. Not bad for a 1 pound 15 ounce baby. She only marginally lagged behind Savannah. I must note that we are still using the diaper when sleeping. I have no desire to change sheets unnecessarily. It hasn't instilled any sort of "diaper confusion" and, like sippy cups, are a form of mess prevention that I plan to use for a VERY long time.

I sigh in exhaustion when thinking about doing this all over again. Adeline. . . your turn.

People Magazine and Micro Preemies

Adeline Belle 2 days old

I am going to try and make this short and to the point. I could go on and on.

Recently, People Magazine spotlighted six micro preemies. It was an attempt to inspire. In the preemie community, it infuriated. Unfortunately, this article portrays the micro preemie road as pretty uneventful. A stay in the NICU, a few steam baths in the tub and all is well. We, who raise these micro preemies beg to differ. The statistics quoted are taken from a cohort of surviving micros in the 80's and state how nearly 90% finished high school and more than half went on to college. The article failed to mention how many didn't make it out of the NICU. In the 80's only the strongest micro preemies would survive. I am positive the statistics would have been much more grim had they included the percentage of babies that were never brought home.

This easily segways to the fact that more babies are surviving with the progression of science and technology. Some of these babies would have not survived in the 80's and most likely suffer from a disablility today. If these same babies have escaped a diagnosis, they are certainly traveling with Adeline on her "not so smooth road" of prematurity.

I think that People Magazine had good intentions but covering a topic such as prematurity/micro prematurity isn't something that can be done in a brief article. Yes, I want to hear stories of hope. I want to hear them but don't necessarily think that they need to shower down on society. I scoured the Internet for stories similar to that of my babies in order to find hope and finding these six grown preemies would have lifted my spirits. However, feeding these slightly skewed stories to society only undermines the road of my girls. Most micro preemies don't live a normal life - plain and simple. Being born under two pounds isn't easy, the NICU isn't a mere hospitalization and steam baths don't fix chronic lung disease.

Possibly spotlighting one micro preemie and their very precarious road in the NICU and thereafter could have been a better way to go. This might be the way to get society to understand that babies like mine aren't assumed to live and most certainly are not expected to live a normal life. The odds are stacks against a micro preemie, not for a micro like People Magazine portrayed.

Click here for the article

A Day at Sesame Place

Last month, our girls were treated to a trip to Sesame Place, compliments of the Variety Charity. This charity reaches out to families that have children with disabilities or delays. I can't say enough about Variety. I love how they encompass the entire family for events like these. It isn't just the child that is living with the disability or delay, it is the entire family that lives it. Although you would never hear Savannah complain, I am sure the countless hours of therapy and doctor appointments that have left her to entertain herself in the background isn't her idea of a good time. Like I say in my blogs header, the twins have transformed my family. We are living a completely different life with altered priorities than we did prior to the twins' arrival. Variety has given us the opportunity to give back to our children - all three - for their time, effort and perseverance.

I put together a video that sums up the trip. It was our best trip yet. The weather was super hot for April and the girls were pushing through their nap time. It didn't seem to matter. We all had a fabulous time and kept going strong for five plus hours.

My favorite two moments will always be something I carry in my heart. When we went to see Elmo, Savannah and Lila couldn't wait to get up close and personal. Adeline wanted so badly to hug Elmo but the size, unfamiliar territory and crazy red fur served as a large obstacle. You can see in the video where she "hearts over matter" and leans in for a hug. The second heartwarming moment was watching Lila Grace delight in the parade. She jumped, yelled and pointed at every character. If I wasn't holding her back she was darting out onto the parade route. When Ernie came into sight she could barely contain herself. Luckily, a parade coordinator was standing next to us and flagged her as a child Ernie should visit. The professional photographers were aimed Lila's way as she was exhibiting the magic of Sesame Place.

Enjoy

Too Much Therapy??

Not only do the twins live a therapeutic lifestyle, their big sister does as well. Although she doesn't partake in the therapy, she is listening. Later the therapy manifests itself in various ways. Savannah breaks down directions like that of the therapists, pauses to say, "Eyes, Adeline.", and often is thinking of ways to reinforce what the girls are learning. Recently, Savannah created this "learning page." Double click on the image to see the details.

It says. . .

Sing the ABC for me

Is this a tree?

Is this a ball or an egg

All of course written using inventive spelling.