Art Work

I never understood the magic of children's artwork until the children became my own. I have always appreciated the talent, patience and creativity but never have I had a simple drawing take my breath away and well my eyes with tears. This picture did. Savannah will never know what a magical moment it was when she handed me a picture of me and her daddy on our wedding day.



These other two pieces have made me stop in my tracks with warm fuzzies from my head to my toes. The first is self portrait that Savannah drew for her sisters. "Just so that they remember what I look like and don't miss me when I am not with them." The second is portrait she drew of me. She loves to draw me over and over again. It is magical to be loved by someone so much that they want to create you on paper over and over again. I guess I should also mention that I think she is pretty darn talented to. You should see the book (chapter book she would tell you) she is writing and illustrating about protecting our environment. She amazes me each and ever day!

A Weekend as a Family Unit

We were able to enjoy a wonderful weekend as a family of five. Daddy had very little work which allowed him out of the desk shackles. We had no plans other than to just be together as a family.

One of the most exciting events of the weekend was Savannah's first piano lesson. I was so proud watching her listen and learn her way through the keys. We bought her a timer to set for 10 minutes of practice time each day. Each time it beeps, she is clearly disappointed that practice time is done. We will see how long this continues.

Friday night ended with a cul-de-sac get together. Before heading over, we discovered that all three girls love quesedilla with taco meat. It is always fun to start the night off with a fuss free dinner. Soon after, we threw together a tray of nachos and headed out. Good friends, a couple of beers and kids playing with other kids is my idea of a nice evening. This was the cul-de-sac's first emergence since last fall and it was very nice to see how delighted the kids were to play with one another. The twins have made a lot of headway as they were pretty independent and self entertained by all of the the other children. That is, when they weren't hovering over the nachos and eating them down to crumbs. Do I dare start to think that I will soon be that parent sitting in a chair socializing instead of constantly being needed by my children????

On Saturday we headed out to Strausburg, PA to visit the train museum. This museum has everything my kids need to stay entertained. There is a huge play room that is flanked with model trains of all sorts of shapes and sizes. Hands on Lego, Thomas, Geo Track, and Kinex displays kept everyone entertained for at least an hour and a half. Just when everyone got antsy, we headed out to see the real trains. Translation. . . very wide open spaces to run, rocks for Lila Grace to hold and stairs for all to climb. We had a wonderful time. It was nice to fully invest in our kids without the temptation of multitasking.

Lila was utterly fascinated by the ball loader/dumper

Savannah spent quite a bit of time constructing a train out of legos

We put it on the test track and worked!









After lunch at Target and a 45 minute ride home, it was already 3:30. I had to work and Alex had a lot to get done after the girls went down for the night. For the first time in the twins' two and a half years of life, they were allowed to skip their naps! This was done in order to get them down super early so Daddy could get to work. Daddy reported a little fussiness at the end of the day but all in all they were pretty good for not taking their usual three hour daytime snooze. The reward, 13 hours of sleep and wake up time of 8:30! Yes, that is an hour later than usual and I was happy to snooze a little longer myself.

Today was beautiful. It was warm and humid. The girls played outside while we worked in the yard. They were covered in dirt and I was happy to see it. I guess spring is making its way into this section of the country.

During today's naps, Savannah and I made a little craft that I thought was pretty darn cute. I got it out of Family Fun and think it is well worth the time required. During this time, Daddy finished up his first home improvement project in well over a year. We took Savannah's closet and made it more reachable and spacious. She loves it and I am thrilled to have the toys up off of the floor. Since we have been in limbo land for over a year now, it is hard to do anything in the house. I guess we are breaking down and making our house a home again since no one seems to be looking to buy.


That is our weekend in a nutshell. Most likely a bit boring to read but for me it was worth documenting. I am always thankful for weekends like this. Kids, few plans and beautiful weather. Why does Monday come so soon?


I have to end this post with a video of Adeline at the museum. She was pushing a button to make the model train go but couldn't hold it down. Thus, the train inched along. This really shows her perseverance. I know I would have given up at the third or forth push.

Tubes and Stints

The beginning of the day






Today both girls headed into the OR. Lila Grace had her tubes replaced and Adeline had her tear ducts reopened by stints backed by a fresh set of tubes. We knew it was going to be a long days since both the these surgeries were a repeat from a year ago. Unfortunately, this year we were slotted for 2:30 OR visits which meant the girls had to go nearly 12 hours without eating and 5 hours without drinking. Fun Fun!!

We started the day at 5:00 a.m. and woke both girls to give them Pediasure in a bottle. It seems to stick in the stomach longer than milk. Both girls took the bottles and rolled over until 7:45. They didn't complain about not having bottles in the morning (Adeline still starts her day with a bottle of Pediasure and Lila a bottle of milk to make things fair). We skipped breakfast and then started our busy morning. Adeline headed off to with me to drop Savannah at school and then to the gym. Lila stayed behind with Miss Kathy for speech therapy. Lila drank her way through the morning which kept her content. I thought is would be much more of a battle. We packed up all three girls at 11:45 and headed down to duPont.

The girls got a half an hour of playground time before going inside. Once in the pre-op waiting room we waited and waited while Lila continued to beg for drinks. The girls were entertained momentarily by some of the play structures they had but it was a long wait nonetheless.



Finally we were taken back but only to wait another hour or so in the pre-surgical holding area. One bed and a curtain for our family of five. Nap time was upon us and the girls were hungry. Adeline held it together (our non-eater and non-sleeper if need be) but Lila was clearly fed up.


We handed Adeline off to the nurses after hugs and kisses. It was enjoyable watching her separate so easily. This left us with very difficult and very tired Lila Grace. It was all I could do to keep her from screaming. The tv wasn't cutting it and all she wanted to do was run around the room naked!


Finally at 4:15 (nearly two hours late) Lila was ready to go. She screamed and kicked her way into the OR due to our choice of not using the Versed sedative. I figure the less meds the better. I guess she was quite a bear as the post-op nurse had already heard about her feisty nature.

Immediately after handing Lila off we were headed to post-op to watch Adeline regain consciousness. She was out! Soon little sister was wheeled in next to her and all was quiet for about five minutes. During the removal of Lila's IV, Lila shot up to a sitting position and started screaming. Talk about an abrupt "coming to." She laid in my arms and screamed for thirty minutes in between bites of a Popsicle and drinks of juice. Savannah was trying everything she could to sooth her. She asked the nurses for kitty and Ernie stickers. She brought her the IPod that had Elmo shows. Nothing worked. It was clear she was ready for discharge so we went to see the train display and she was magically better - running around and singing. Who knew that was all she needed?



Adeline took longer than expected to come off the O's. She was dipping below a 90% saturation which kept us there until 6:00 p.m. She was pretty lifeless and when we were discharged but had finally taken a bottle and brought her sats up to 96%.

Both girls came home and devoured some Cheerios. All three girls were down by 7:45 pm which is record timing in this house. It was a long day but a necessary one. I am glad we got both girls knocked out at once. I would hate to go back for a repeat.

The end of the day

Processing

It has been awhile since I have updated Adeline's development. I know that many times I sneak in the word processing to describe what contributes to her deficits. Of course, I feel as though her processing issues are almost tangible even though processing is a quite yet complex task of the brain.

Adeline is no doubt a bright little girl. We are quite surprised that she knows all that she does. However, she is often unable to access her understanding or knowledge that is needed for the task at hand. Adeline is overwhelmed by her environment. She finds it extremely difficult to multitask which causes her to give everything of interest her undivided attention. This is only true until something else catches and receives that attention. For example, I may be doing a puzzle with Adeline while an airplane flies over our house. She freezes and points out the window saying, "Airplane, up high in the sky," over and over again until the airplane leaves. It doesn't matter that I am trying to refocus her back to the puzzle and using hand over hand to help her get the puzzle in. Another example that we see all too often is when we ask Adeline to go and get something like her coat. She will walk to the mud room but is distracted by the car on the floor and sits down to play with it instead of carrying out the task. I have to remind her two or three times for her to redirect her attention to her coat. You might think that this is typical two year old behavior but when observing Adeline during one of the above examples you will see that she doesn't have the ability to keep on task no matter how motivated she is.

Another area of processing that is difficult of her is speech. When asked to repeat something or answer a question that involves multiple syllables or words, Adeline often can't. Her lips quiver, her eyes reflect concentration but her brain won't give her the support she needs for her output. Information goes in but it seems to get scrambled or lost. I don't feel that any of the above reflects a cognitive deficit. I do feel as though she is delayed partially due to her brain not holding information in a typical fashion.

I don't feel like I am making any sense here but processing is pretty hard to describe. I have a video of Adeline trying to hopscotch. She is highly motivated to try and jump down the squares and is often quite proud when she finishes. In the video I ask her jump jump again but she is distracted by the star she sees. She is then distracted by doors and points out the door by the stairs and then our front door. Next, the overhead light catches her eye and she begins labeling that instead of turning around and jumping. Eventually, I bring her attention back to me and remind her to jump jump and she happily does. She wanted to jump the entire time but couldn't tune out the distractions in her environment and hold the task in her head long enough to complete it. She reminds me of Robin William's HBO special when he is speaking of George Bush and his distraction during a public address when he sees a kitty. Of course the HBO special is pretty funny but watching Adeline struggle with her focus is not.

I must mention that we don't have a video camera that works at the moment so I was using our SLR. I can't follow Adeline around when recording because it won't refocus in the process. I hope the video helps you wrap your head around some of Adeline's struggles.

A Random Conversation

As I was snuggling Savannah before bed tonight, we were talking about getting older. I told her she needs to stop because she will be an adult before I know it. There was a very long pause and then,

"14!"

"Fourteen what ?" I say.

"Fourteen years until I am 20 years old."

I couldn't believe she could figure that out without fingers or a pencil. I asked her how she did it and she said she counted. Pretty good counting for a 5.5 year old. I told her that she was smart and explained that the kind of counting she just did would be difficult for most five year olds. She said, "It was easy for me though" in a matter of fact kind of tone. I told her that she was lucky because thinking is easy for her. She came back with, "Well Mommy everyone is different you know." She's so right!

The conversation turned to different color eyes, hair color and the differences she sees in her sisters. It seemed to culminate with skin tones and faces. Savannah told me she liked the color of her hands and especially liked my face. "I love how your faces always looks sleepy Mommy." Okay, I was trying to prepare myself for anything when discussing skin tones with my five year old but wasn't ready for the tired face comment. Is that really what she sees when she looks at me? It was only two days ago when we were examining all my wrinkles and Savannah was squinting her eyes so that she could look just like me. I am not asking for much but could my face avoid going into the dumper before I'm 40?!

Happy St. Patty's Day

It is a good thing that Savannah told me today was St. Patricks's Day. I don't typically keep track. This region of the country is much more into the holiday than where I grew up. I figure I have to "keep up with the Flannigans" so I adorned my girls in green. I am gearing up for some coin hiding thanks to my neighbor who was on the ball and purchased them before today. Savannah made a little felt pouch at preschool and took it out of her backpack today to find a shiny gold coin nestled deep inside. She was so excited that she grabbed her friend next door and went looking for Leprechauns for an entire hour. I guess I need to establish some Leprechaun tradition in the Wolf-Shaw household.

March Madness

It is that time of year again when we dust off the TV and pretend that we know what is going on in college basketball. The girls can't seem to understand that Mommy and Daddy are watching TV. They also don't understand why Elmo doesn't appear since he plays endlessly in the van.

Not so long ago, Savannah sported a Duke cheerleader outfit for Halloween. Looks like it might be a good fit for Miss Grace this year. She loved wearing the dress and had to have the hair bow dangling from her not so sturdy ponytail. "Go Duke" echoed throughout the house for a short while but soon nap time was upon us. Yes, she slept in the outfit and fought me when I took it off for dinner.

Some of us don't let basketball define this time year. Savannah is a bit more into the egg theme and was very pleased to drag out my Easter decorations and spread them throughout the house. Notice the itch for spring as shown by her choice of dresses

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.