Waiting. . . Waiting. . . Waiting. . .

Still waiting with all fingers crossed that results come back quickly and without evidence of Williams Syndrome. Don't know if it is the stress or all of the viruses going around but I ended up sick in bed yesterday. I think all of this waiting is making me sick with worry.

Lila Grace pretty much sums up my emotions in this picture



While stuck in the waiting game, I think it is worth reporting that Adeline tried to sneak up the stairs yesterday. That is a big deal for her as her adventurous side is just beginning to emerge. She is also starting to use a push toy - much to her dismay. She clinches her fists and resists the best she can but eventually she takes a few steps. Crawling is easier but Miss Cynthia (her PT) is forcing her to get up and moving. I can't wait for her to walk but I am afraid her trepidation is going to keep her cruising furniture longer than necessary.

18 Month Milestone???

As I continue to walk down the road of "prematurity," I feel as though my girls are starting to evolve into typical toddlers. They giggle, fuss, play games and get into everything that is off limits. Oh, did I forget to mention that they fight? Yes, that too. All of these things point to normal toddlerhood right?

On the flip side, I feel like we are stuck in the prematurity rut. A typical week looks like:

Monday - Physical Therapy
Tuesday - Speech Therapy
Wednesday - Occupational Therapy
Thursday - Physical Therapy
Friday - Special Instruction

Our list of physicians include the following disciplines:

Pulmonology
Cardiology
ENT
Genetics
Opthamology
Developmental Follow
Dentist (soon)

We have yet to "fire" any of our therapists or doctors. Shouldn't the list be shrinking if we were moving closer to normal? The girls are officially 18 months. I didn't expect our lists to be this long a year and a half in.

Everywhere I go I hear how well the girls are doing. I am in agreement. Look where they started - so small, week and questionable. Today, they are full of life and opinions. Yes, an opinion is what I prayed for day in and day out for Adeline. God answered that prayer and without my asking gave a pretty strong opinion to Miss Lila as well. Normal toddlers?????

I am not sure where I am going with this post. I guess it is evidence that I am still on the fence when I look at the girls. I am so proud of them and love every last bit of them. I love to put up pictures of the day's happenings and comment on how they are growing and developing. Sometimes, when I read through this blog I feel like prematurity isn't the undercurrent anymore. Yet, when I measure the girls against others their age, clearly prematurity exists - possibly in the form of a tidal wave.

"New Normal," has been my theme for the last 18 months. I think we (our family) has done a decent job at adapting to our situation. My question is, "Will all this ever be a thing of the past?" Or, will we just become so accustomed to living life behind the 8 ball that we no longer notice our lives don't parallel the lives of our neighbors and friends?

I remember sitting in the NICU just wishing the first 18 months to soar by. I wanted answers and most doctors seemed to think the answers would come at this year and a half milestone. Well, the months did soar by but the answers haven't been found. When do they come? I am tired of drifting the sea of prematurity! I am ready for someone to tell me where the ceiling is or if the sky really is the limit in terms of the girls' development.

My Latest Favorite

Not perfect but as close as I am ever going to get when trying to take a picture of the two of them. It is almost easier with three because Savannah can HOLD them down!!

Miss Grace

Well, not actually a day - an hour. We went from walking around the house with Savannah's horse backpack (don't ask me why this thing is so well liked by my children), to tearing up toilet paper all over the bathroom floor.

Before bath time Lila Grace insisted I keep helping her put on her backpack. This child has skills well beyond her age. She carefully pulls one strap off of her arm and then the next in order to have me help her put it right back on. When she feels the strap slipping she adjusts it just like that of a school kid. Now Savannah still claims she can't put on her shirts. Yet, her little sister is close to mastering a backpack? Possibly, my oldest daughter has been playing the helpless card for much too long.



After bath time, I am frantically running around upstairs trying to get our house in order for a showing first thing in the morning. Dusting, making sure toothpaste is washed out of the sink and these sorts of things took my focus off of Lila. Well, my cleaning efforts were soon canceled out by the mess that Miss Grace was making on the bathroom floor. I should have known something was going on because quite is never a good thing when it comes to Lila Grace. She had crawled inside her vanity, unwrapped a roll of toilet paper and then proceeded to tear it in to tiny little pieces. She had the guilty look when I first found her but soon after thought she was soooo funny! How did I make it without cabinet locks and baby gates with Savannah? I can't get Alex to install them quick enough for Miss Grace.

That Other Shoe Just Might Be Dropping

In the name of honestly documenting my girls' journey, I feel I must post the following.

Back in December when we went to the developmental follow-up appointment, Dr. Bernbaum suggested Adeline see a geneticist. Her reasoning - she has dismorphic features, is developmentally delayed, doesn't look like her parents (I beg to differ) and has low tone. Well getting into any genetics doc is a long and drawn out wait.

Our appointment was yesterday. We saw Dr. Gripp out of duPont and she was wonderful. Adeline was at her best - smiling, laughing and in general wooing everyone with her fabulous personality. Lila Grace also came and showed off her strength and abilities as she used just about everything in the exam room as a climbing apparatus.

Dr. Gripp spent a lot of time measuring Adeline's physical features, looking at both Alex and I and just getting a feel for the twins. She didn't immediately see any conclusive evidence but one syndrome seemed somewhat consistent with Adeline's physical and physiological characteristics. Adeline has a wide nose, a longer upper lip, puffiness under the eyes, is developmentally delayed, has suffered from cardiac issues, and has feeding problems to name a few. Although Dr. Gripp was reluctant to "clinically" diagnose Adeline, she is running a FISH test to determine whether or not Miss Belle has Williams Syndrome.

Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems. Most notably, children with WS are cognitively impaired and most likely will not live independently as adults. I am by no means an expert on this syndrome and don't claim to understand what it would be like to raise a child with WS. You can read more about it at williams-syndrome.org.

In order to not belabor the obvious, we are struggling to come to terms with the possibility of our little Belle not leading a normals life. In our heart of hearts we are still hopeful that the test will come back negative. It will be a LONG wait (2-4 weeks).

During this time I am sure my emotions will ebb and flow. Ironically, it is the source of this worry that helps me regain composure. Adeline's smile helps me lose myself in the moment which is what I need.

This afternoon I was extremely tired. I had stayed up late reading blogs by parents raising children with WS. Lila Grace and Savannah were asleep so I was able to get some one on one time with Adeline. After some fun, I put her down for a nap in my room (consequence of the twins thinking nap time is playtime) and headed down stairs to the computer. After giving up in my search for "answers," I went upstairs to lay in my bed and listen to my little girl laugh and babble (obviously not sleeping). She was trying out her "S" sound for the first time and it was really cute. I am confident that I dozed off with a smile on my face. God works in mysterious ways!!

I love her completely - this will never change!!!

Happy Valentine's Day

Yes, Daddy made it home . . . after fighting a dead battery and finally taking the train. It is nice to be a family unit again.

More importantly, Adeline passed her hearing test!!! She did so well in comparison to her last tests that they ran it twice. Two times tested, two times passed. It is so nice to let this door close. I can finally put my hearing worries at ease. Good job Miss Belle!! The best part about the test was that I was able to spend one on one time with my little girl. Granted, it was in a doctor's office but it was still quality Adeline time.

Well, Valentine's day has come and gone. Savannah was beyond excited. She has been counting down the days for at least the past three weeks, if not more. We are all sugared out and she is already asking about the holiday that comes next. I put some pictures together for a little V-day clip. The girls are really starting to look like toddlers!!!

7 Hours. . .

But who's counting? Actually, we all are. It will be nice to have daddy home again. Unfortunately, we just experienced an ice storm which will more than likely delay his flight until who knows how late into tomorrow. Melt . . . Melt . . .Melt . . .

After a cold start to the morning we were able to take in some pretty snowfall. I thought it was funny that the girls were so mesmerized by the flakes. They just zoned in and looked completely lethargic sitting in their highchairs. Of course, that wasn't the case once I let them out. There was no shortage of running, screaming and fussing today. I guess that comes with the territory. Whenever I am housebound, we are all more than likely cranky!!

Here is a little shot of the girls watching the snow. Not great videography but I decided to post it. Maybe the girls can help us to remember to slow down and watch the snow. It is, after all, a beautiful sight if you are aren't too focused on airport delays.




On a more pragmatic note, Adeline goes for a hearing test tomorrow. We are hopeful that this will close a long chapter of concerns regarding her hearing. Both girls had fluid in their ears which prevented them from passing their hearing screens but Adeline was noticeably worse than Lila. After tubes last fall, we have seen remarkable improvement in Adeline's response to sound. That being said, she remained borderline for hearing loss the last time she was screened. There is no doubt that she can hear. I just want to walk away from her appointment knowing that her hearing issues have resolved.