Bliss

In-Laws in town

Alex at a conference in Chicago

Cheap airfare

No overly important events scheduled at home



Put it all together and it equals BLISS. For the first time since the twins were born, Alex and I are "getting away." I flew into Chicago yesterday to enjoy a 48 hour vacation from my life. Don't get me wrong, I love and appreciate my life. Due to the fact that we NEVER have anyone babysit all three kids, Alex and I are well overdue for some R&R.

Times have certainly changed. Before children or when we just had Savannah, I would have felt pressured to take in all that Chicago has to offer. And, yes, Chicago does have an extensive list. Now that I am stay at home mom of three young children, often times without a husband, all I want to do is stay in this wonderful hotel room. Luckily, Hitachi sprung for quite the posh pad.

After arriving yesterday, Alex and I took the train to the hotel and I was able to see the enormity of Chicago which was reminiscent of Philly in places. Later, we headed out to Michigan Ave., the "5th ave." of Chicago. We found ourselves in Lego Land and other children stores and never in a store for adults. A sign of the times. We followed up our stroll with a nice, quite and delicious dinner. The grand finale was coming back to the hotel around 9:00 p.m. and watching American Idol, random shows on HBO and finally a late movie until 2:00 a.m. I realize this is not out of this world for most but I haven't seen American Idol in years and mostly likely watched more TV last night than I have watched all year. Being able to lay in bed and watch TV with nothing to clean, no one to attend to and sleep as long as I want is an amazing change of pace.

Today marks the first 24 hours away from the girls and I definitely miss them. Time away allows you to look at your life and take in all of the blessings. Alex and I found our conversations often going back to how lucky we are. The twins baffle me. I am in awe at how lucky we are. I could give a long list of blogs that I follow of preemies, all born bigger and some later than Adeline. Most of them have profound, life altering disabilities. We, from the outside looking in, look like a typical family. Three vibrant and sweet girls who fill us with joy and love are more than I could ask for. We are blessed to have a job, a home that is not in foreclosure and community of friends who we completely adore.

This time away, although very brief, has been priceless. I am madly in love with my life!!

Dance Dance Dance

The video below is a bit long but worth watching if you get a kick out of kids spinning themselves dizzy. Lila and Adeline seem to spin more than "dance" when out on the dance floor. This is clip of Lila showing off her spinning moves. I have her pause to look at me every now and then which demonstrates her state of dizziness. Towards the end she tries to break out in song. The spinning baffles me as I can only go around twice at the most without loosing my lunch.

Working on a Smile

It is about time for the girls to perfect their smile on command face. Adeline is pretty much there but Lila, even when willing to try, closes her eyes. Somehow the smile and closed eyes go hand in hand. Today we practiced on smiling with her eyes open. She tried so hard that her cute little face would contort. After 10 seconds of trying she would say, "Yeah" and give me a high five.

Looks like we have some more practicing to do.

2.5

Yep, the twins are 2.5 years old. I can't believe it. Actually, I am hitting a state of depression over the age of my girls. Why can't I stop time!!! Help me, they are growing up too fast.

We were going to take pictures - something more formal - to mark the milestone but the girls ended up being cranky and I ended up being too sad. We did end up taking this picture though. There are two versions. Lila with her binki, and Lila Grace screaming because I took her binki.

Where did my babies go?

Our Little Pianist

Alex took this video while I was out. I am pretty impressed that she is picking out notes. Please ignore the rather loud conversation going on in the background.

That Time of Year Again

I can't believe that this will be our third March for Babies walk with the girls. How can it possibly be? I remember our first walk when Adeline was hooked up to the O's and admitted to the hospital the next day due to respiratory distress. Our second year was much more relaxing. Watching Lila take a few steps along the way was a remarkable reminder of how lucky we are.

I always hesitate to post the March for Babies Widget and bring attention to the walk. I HATE asking people for money. I am always weary of giving money to very large organizations because I walk away wondering how the money was used and if it was used effectively. I wish there was a more personal way to touch the lives of preemies but I have yet to find it. Regardless, I can't deny the fact that the March of Dimes saved my girls' lives. Without surfactant , I wouldn't be a mother of three; especially since my girls were delivered in the absence of steroids(the research regarding surfactant and its use in the treatment of Respriratory Distress Syndrome was funded by the March of Dimes). I just recently reviewed the contributions of the March of Dimes and it is pretty remarkable. So. . . I guess I am going to happily send my donations away and have faith that the money will contribute in a very small way to the next March of Dimes Milestone.

If you feel inclined to support our family in our efforts to raise awareness of the prematurity epidemic and ways that the March of Dimes is trying to help, you can do so a number of ways. March for Babies is in numerous neighborhoods across the country. Please, sign up for our team and walk locally. You will be immersed in miracles as you pass many babies just like our girls. Second, you can donate money (my guess is that you already knew that). Third, you can hold us in your thoughts and prayers as we hit the pavement on April 25th.

Here is a video I made for the walk last year.

Kennedy Krieger Institute

I realize it has been over a week since we arrived at the Kennedy Krieger Institute but time flies these days. I wanted to give myself time to digest the conversation we had with Dr. Hoon about Adeline's development. Honestly, I haven't really had time to sit down and think, something I miss these days.

Adeline's visit was more than positive. When Dr. Hoon entered the room he saw Savannah sitting on my lap. He asked if it was Adeline with a quizzical look on his face. He proceeded to note my concerns about Adeline and why we were knocking on his door. I relayed her prematurity, many delays and processing issues as concisely as possible. While Dr. Hoon was combing over Adeline's NICU discharge summary, Adeline and Alex came strolling in, Adeline pushing a doll stroller. She was all smiles and very active. Dr. Hoon was immediately impressed and noted that she doesn't reflect her very precarious and rough start in life.

Dr. Hoon asked Adeline questions, performed a physical exam and watched her interact with all of us in the room. Before he could ask her to point to certain pictures on his cards, she was pointing and labeling herself. He found her social/emotional skills on target.

After spending an hour with us, Dr. Hoon addressed Adeline's therapeutic needs, medical needs and more than likely, educational needs. He didn't tell us anything we didn't already know.

Therapeutic Needs - He believes that we are supporting Adeline sufficiently. He warned against chasing down every alternative therapy that claims it has been show to improve the lives of children like Adeline. He was supportive of speech therapy on the horse. Dr. Hoon thought that my idea, of mainstreaming Adeline for two days of preschool and sending her to the IU (special needs preschool) two days a week, was realistic. Of course, we will have to see what happens during their transition when they turn three.

Medical Needs - Dr. Hoon made it clear that looking for developmental pediatricians to inform us any more than we already are, is a wasted effort. At this point, we should wait until Adeline is five and have her seen by neuropsychologist. At that time an MRI will be done, IQ testing and other standardized assessments in order to identify learning disabilities. This is when my concerns about processing will most likely be confirmed. Until then, we wait. We are going to have a traditional MRI done on Adeline just because Dr. Hoon specializes in reading MRI's of children that are born prematurity, with CP or with other neurological impairments. We aren't going to have his "specialized MRI" performed because it takes a day and a half to read and he is out of network with our insurance company. The thing about an MRI is that it doesn't change anything. The brain is structured and there is no re-structuring to be done. Dr. Hoon believes that if this MRI was done, it would identify areas of the brain that are structured differently. Because Adeline was still laying down brain tissue in the NICU, her neurological system is certainly at risk. Hopefully, after sending Dr. Hoon our standard MRI results, he will not see anything that stands out.

School Needs - I have always thought it safe to say that Adeline will have IEP's thorough her school years. Along with Dr. Hoon, I am hopeful that she will mainstream with support. No one has given reason to think she will not. Learning will most likely be difficult and frustrating to Adeline. Her processing and sensory needs will have to be met which is easier said than done. I have worked in various schools and know all too well that IEP's sit in a file and are often neglected except when giving tests. I don't look forward to the inevitable uphill battle with the public school system. That being said, I have high hopes for Adeline and her schooling.

Dr. Hoon concluded that Adeline has many delays. Her cognitive skills are low but may eventually fall in the variable range of "normal" cognition. Only time will tell. In order to support Adeline as she travels a very long and uphill road, Dr. Hoon left us with this quote:

Childhood is not a race, but a journey.