Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Monday, October 30, 2006

What is that smell??

Brian and I were just exhausted after the weekend. We did have a Halloween/kid's birthday party, but other than that we just hung out with the girl's and got stuff done around the house. Maybe we were tired because of daylight savings. Do you remember when you used to love daylight savings, YAHOO! an extra hour of sleep. Now with children it has a whole new meaning. Mainly in the morning, trying to convince them it is certainly not time to get up at 4:30am.

Anyway, Sunday evening we just fell into bed. Around 1am., we both woke up to the smell of smoke and flew out of bed. It was pretty strong, but we had no idea where it was coming from. It was literally just in our bedroom and in the powder room downstairs. After investigating for about 45 minutes we came up with nothing. I was ready to call the fire department, but what do you say..."Um, I think there may be a fire in my house, but I'm not sure". We then realized that the house was getting colder and colder and the furnace had not turned on. The smell was coming from the furnace, through the vents and now the furnace was dead. Great! Brian decided to stay awake, do some work and protect his girls. I went back to bed and pretended to sleep, waiting for the house to start fire. I was also incredibly paranoid because I put extra blankets on Emerson and I had to check on her every hour because I was sure she would suffocate. What a restful night of sleep...

Now today, I am waiting for the furnace guy to show up. Luckily, it is a gorgeous day so we are not freezing here in Wisconsin. Ella is refusing to nap, even though I know she is tired. UGH! Let's hope for some sleep tonight. Thank goodness for coffee!

Monday, October 23, 2006

Chow Down!

I just have to share how well Emerson has been doing lately. She loves to eat and sticks her tongue out down to her chin before each bite. I've just started introducing finger foods and I've started with Puffs which are great because they almost instantly disintegrate in her mouth. It's always nerve racking starting solids, you just hold your breath and pray you don't have to do the heimlich. She also cup drinks about 1/2 cup of rice or oatmeal cereal a day which my friends think is amazing to watch her do. She is currently closing in on 16 lbs. Just when I think those cheeks couldn't get any bigger. Here is a picture of a face only a mother could love!

Emerson has also made enormous strides in her physical ability. In her bag of tricks is now sitting up on her own (although we do have to put a pillow behind her because when she get tired she flings herself backward), rolling over multiple times to get a toy, and she just started this week pushing all the way up on her arms. Most importantly she is a smiling queen. We do have a hard time capturing it on photo because she sees a camera and then just stares at it. Go Emerson! We are so proud.

This past weekend we had friends over with their 1 1/2 year old son, Sam. I took some pictures of him with Ella and wanted to share them because I feel they just capture her personality. She is such a ham!! I don't know what this elbow pose is all about, whenever I say "cheese!" this is the pose she strikes.
She also loved dragging poor Sam all over the house and telling him what to do. I know she will be the girl in Kindergarten who picks out a boy and says "Hey (insert shy boy's name here), just so you know, you're my boyfriend." She is so loving, so smart, and just a great big sister.

These past months I know were very hard on Ella as well. She had to endure the hours of crying just like we did. She also had to put up with a mom who was unavailable a lot because she was soothing a baby. It's amazing how she just pulled through. She loves her baby sister and when she crys manages to still say, "Oh, poor baby". We've had some challenges now that she is 2, but I'll take it! She is so much fun!

Tuesday, October 17, 2006

Fall Fun

I love the fall, even in Wisconsin where it can feel a bit more like winter. I love crunching leaves, hot drinks, and cold, red cheeks that need to be warmed up. I know my husband loves Fall since it is football season, ugh!!! Thank God for TIVO, now at least he can watch the game in half the time :)

We had a great time at the pumpkin farm. There is nothing like seeing pure joy on the face of a 2 year old. So much to do , so little time. Emerson mainly kept her eyes closed to conserve energy and keep warm. Not much more to say except we found great pumpkins and wore the girls out with all the fresh air. That is definitely our goal most days, wear out the children and on this day we succeeded.

Side Note: Emerson slept through the night (7pm-6:45am) for the first time!!! YEAH!!!

Friday, October 13, 2006

Visit to the Cardiologist

This morning Emerson had her follow-up with her Cardiologist. We haven't seen him now for 3 months since he dropped the bombshell that he suspected William's Syndrome. Needless to say, I was not looking forward to this appointment. Three months ago, I very unsuspectingly took my daughter to see the Cardiologist to check out what was supposed to be a benign heart murmur. I went by myself and was very unconcerned. At this appointment I gave him Emerson's history: interuterine growth retardation, low-birth weight (5lbs 1oz.), poor eater, slow weight gain, severe reflux, severe colic, and now heart murmur. He asked me if Emerson looked like my daughter at this age (being in the health care industry I know why people ask that question and I started to get a bit nervous). Looking back I think the Cardiologist knew even before the examination. Anyway, we completed her echo and she had mild pulmonary stenosis and very mild stenosis of the aortic arch. The MD than told me that he suspected William's Syndrome. I handled him explaining the news to me like a champ and then when he walked out of the room I broke down. It's hard to explain getting news like that on your precious, innocent, beautiful baby. You just feel like your heart is being squeezed. I remember leaving thinking this doctor didn't know what he was talking about until I got home and got on the internet and saw her face staring back at me in the pictures of other babies with WS and then when I read the features there was no more doubt. Thankfully the FISH test came back only 5 days later so we didn't have to be tortured with the wait. Boy, that seems like years ago, but it's only been a few months.

So now we are back 3 months later...her current report is basically her heart sounds good, but she has very high blood pressure (120 upper, 100 lower) which is obviously concerning. They also suspect that she may have a double aortic arch, they think they saw it on a previous video swallow study. She is going to have a MRI under general anesthesia at the end of November to get clear pictures and come up with a game plan. From what the Cardiologist explained, if she has this double aortic arch they would likely need to correct it in the next couple of years before it tightens around her trachea and esophogus. Yikes... All we can do now is wait and try not to worry...easier said than done.

Wednesday, October 11, 2006

Introducing Emerson Grace

I feel Emerson is ready to be introduced to the WS blogger community. More accurately her mama feels like she is no longer drowning and can actually commit to writing a blog. Emerson Grace is 8 months old and was diagnosed with WS about 3 months ago. She FINALLY seems to be done with her colick which I completely attribute to her hypercalcemia. I really spent the majority of her first 7 months of life soothing her. Most of our time was spent bouncing up and down and saying "shh-shh'shh" or if I was very desperate we would go into the bathroom where I could run the fan. I do feel like a professional soother and could write a book on soothing tips. It is also a good way to lose weight by the way and unfortunately get gray hair!! Anyway, life is so much better now and I am actually getting to know a beautiful, charming baby that was hidden in a body that must have felt so terrible.

The following blogs on beautiful children with WS helped me get through a very tough time and I want to dedicate this to them: Clare, Tatum, Daven Tate, Eric, Avery, Ava, Brady, and Szabi. I know only some of the moms know me, but I feel like I know all of you well and I thank you all from the bottom of my heart for getting me to where I am today. By reading your thoughts, concerns, and joys I knew I wasn't alone out there. Maybe I too can provide that to new parents of children with WS. Lots of Love...