Life with Ella and Emerson

Just one of those days...

2009-06-08T19:45:00.000-07:00

While Emerson can be completely charming and adorable, she has her moments. Today, we spent the afternoon running errands and all of Emerson's adorable quirks were in full effect and not so adorable in public. For instance, as we were standing in the check out lane at the grocery store she asked the woman behind us for a hug. She is very hard even for strangers to resist, so before I could stop it the woman hugged her. Then Emerson asked, "kiss, please?!". Once again before I could utter a word the woman kissed the top of her head. Emerson then grabbed both of the woman's hands and held tight. Ella, who was watching the whole thing, cried out, "Emerson, don't hug and kiss strangers!!!" This then completely embarrasses the poor woman who was just being kind and makes me want to stick my head in a hole. UGH!

Emerson has also started calling out "Hi, Grandma!" to any woman over the age of 40 and "Hi, Daddy!" to any man around Brian's age. I'm trying not to notice the dirty looks.

I am starting potty training with Em tomorrow. We will see how it goes. It may be too early for her, but I figure I have the whole summer to work on it.

Emmy and her Microphone

2009-06-03T10:08:00.000-07:00

The girls are into performing lately. Emerson is picking it up from her big sister that holding a microphone and singing for a camera is very cool. She follows me around with her mic saying, "more Emmy sing please". Here are two quick clips of Emerson singing. The first is Twinkle, Twinkle and then her ABC's.

Good Morning, Sunshine!

2009-05-14T06:33:00.000-07:00

Slacker Blogger

2009-04-24T05:51:00.000-07:00

Sorry I've been such a slacker with blogging. I've gotten some recent friendly pressure to post another update so here it is.

Emerson seems to be doing well at school. I just got off the phone with her teacher and she said "Emerson is such a doll, but boy, can she be stubborn." Yep, sounds about right. She can protest quite loudly when she doesn't want to do something or we don't give here what she wants. She has a minor meltdown, we usually walk away, and then within 1 minute she will come over, take my hand and say, "Hi, sweetie".

Emerson's language development continues to be slow, but steady. She is putting more words together and her vocabulary is crazy. One of her favorite things to do is to name as many items in a category that she can. For example, if I say "bugs" she will rattle off "spider, ants, butterfly, caterpillar, bee, etc..." The other day, her teacher sent home a note that said they were working on sea animals, the teacher held up an animal and said, "seal". Emerson corrected her and said, "no, walrus". Emerson is also great at naming her letters, shapes, and numbers. These things are all concrete, but anything abstract including simple questions, forget it. She often doesn't answer people when they ask her for her name, age, how is she. She struggles with things that aren't a physical entity.

Emerson is now getting into trouble daily. I just checked on her and she was coloring on the wall. Yesterday, she crawled onto the table, sat down and helped herself to some pineapple. When I caught her, she said, "Yum, mommy. Pineapple good." She loves to drink out of the dog bowl, ick.

On to Ella...who will be five in about a week. She is just growing up so fast. She is sensitive, kind, and loving. I really think she is starting to pick up on the fact that their is something different about her sister, but hasn't asked me yet. I know we need to have a conversation with her, it just hasn't happened. She is protective of her. The other day a friend of Ella's was drilling Emerson about animals. For example, say "elephant", say "horse". Seemed harmless to me, but Ella put her arm around Emerson and told her friend, "My sister knows how to do that, stop asking her." Wow!

So that's the quick and dirty. The girls, myself, and my mom are leaving for Florida for a week tomorrow. I'm looking forward to the warm weather and spending time my mom. I'll try to post some pics when we get back.

FYI- The pictures are of the girls with their Aunties and future Uncle Paul. Emmy loves Paul and even though she hadn't seen him since X-mas, walked right up to him and said, "hey, Paul".

A Big Week

2009-02-05T06:18:00.000-08:00

My baby girl turned 3 this week. Thankfully, she is in denial as I am. When you ask her how old she is, she just can't stop saying "two!". We have a full year of programming under her belt with that one. She had a wonderful birthday and loved opening up her presents. Her favorite "gift" is a birthday card that sings "Happy Birthday" to the tune of "B-i-n-g-o". She opens and closes the card probably 25 times a day.

Emerson started school this week. She goes Monday through Thursday for 3 hours per day. The bus comes up our driveway to pick her up and drop her off. I cried the first day and now I am loving life!! I have three hours to myself every day. Right now I am casually blogging and drinking coffee, how great is that. She seems to love school. They write in a notebook to let me know what she did during the day and what therapists saw her. This is so nice since Emerson is a little short on the details.

Ella continues to love school and is such a little actress. She got a princess CD for Christmas that she has memorized. I love listening to her belt out "Reflections" with such passion I think she believes she is Mulan. So heart-felt. We are going to Disney on Ice tonight so she will be in heaven.

Ella often says things that make me believe she is "4 going on 15". This week she asked me why I have "cracks" around my eyes. I said, "What, I DO NOT have cracks around my eyes, show me where." Sure enough, she points to my crow's feet. I already spend a fortune on my skin care line, now what, botox?

A New Year!

2009-01-05T13:28:00.000-08:00

Time sure flies. I have been very neglectful of this blog, but I do try to keep up on everyone else's, even though I don't comment too often. Christmas was very fun this year. Ella was just so excited and it is great to have some new toys in the house. We really don't buy the kids too much stuff except on holidays and birthdays, so we were in dire need of some updates. Emerson had a great time as well. She loves company (especially men, especially men she doesn't know). She was in her element prancing around and having all the new people pay attention to her. I will never forget waking her up from a nap and her realizing that we now had a house full of guests. She walked around with her hands up in the air, exclaiming, "yah, yah, yah!!!" She liked unwrapping her presents and the toys she got are being played with somewhat. The best gift Santa brought were some musical instruments, a recorder, kazoo, horns. She loves them. She has been drooling more lately so we are bound and determined to work on that.

Ella has been quite a little dancer lately. She loves listening to music and dancing. The other day she told me, "Mom, I just love that hip-hop music." Wow, they grow up fast. I've realizing, however, I need to invest in "Kid Bopz" because some of the lyrics on XM are so not appropriate. I heard Ella belting out, "I kissed a girl and I liked it". Pretty funny, but that will not win me Mom-of-The-Year.

Emerson will be 3 in a month. Life with Emerson continues to be an adventure. She is adorable and sweet, but boy can she cause a ruckus if she doesn't get what she wants. I am trying not to baby her and make her more responsible, well as much as I can for her developmental age. I'm trying not to carry her as much, make her throw things away, put items on the table, get me diapers, get herself undressed, things like that. She is talking a bit more lately, but boy is this area slow. Her vocabulary continues to grow, but she really struggles to combine words and it seems like it is a motor planning issue. We are doing lots with rhythm and using carrier phrases like, "I see _____", "I got ______". She does have a few phrases she uses a ton, "read book", "where (daddy) go?". And the other day when Ella came in the room wearing a dress I heard her say, "Wow, beautiful!"

Emerson will start Early Childhood at school next month on the day she turns 3. I am looking forward to it. Birth to 3 was really just a support for us and not really providing any type of extensive therapy. She was only getting most therapies once a month. They really were relying on me to do the bulk of therapy. Well, I am incredibly relieved that now she will be in a program 2 1/2 hours each day and will be getting all therapies 1-2 hours per week. That will be incredible and I will feel less pressured to be her therapy provider. I know she is going to love it and I know they are just going to LOVE her. We have our IEP next week which should be interesting. I've written many a goal in my day as a Speech Path for an Early Childhood Program, but it will be a whole new experience on the other side as a parent. I already feel vulnerable and I'm not sure why. I do know that I will miss my baby girl every morning when she is at school. Hope I'm ready for this.

Just Because...

2008-10-27T09:26:00.000-07:00

I thought I would post a video of Emerson. She is just so lovable and I hope this captures her beautiful, sweet nature. I haven't posted a ton lately on Emerson and what she has been up to because, frankly, we have been at a bit of a standstill. She is expanding upon her single word vocabulary, but not combining a ton of words. This is how it goes with her. Huge bursts of development and then not much. This child is increasing our patience ten-fold. We continue to work hard and hope that it comes. But, we love her and will just wait.

Did you notice in the video that I asked her to not eat the crayon. She eats crayons, candles, you name it. Everything, but food really. The other day I saw her chewing and asked innocently, "Whatcha eating?" Her response, "bugs". I held out my hand and out came a very unhappy ladybug.

WS Awareness Event 2008

2008-10-26T17:51:00.000-07:00

Well it was a lot of work, but incredibly worthwhile. This year's event raised a bit less money than last year (we should end up just over $7,000), but we kind of expected that given the economy. We had well over 100 people attend. Mainly our family and friends. Dr. Bonnie Klein-Tasman gave a short power point presentation on WS and where all of the funds go and what type of research she does. So many of our friends and family had conversations with Dr. Bonnie and I really appreciate that. They are interested in WS and what is going on with Emmie. We had some friends come whom we only see about once a year and they asked me what the future held for Emerson. Wow, such a loaded question. Brian and I told them that our long-term goal for her is independence. That one word makes it sound so attainable, but we are going to be working our butts off for the next 20+ years to try and achieve that. If that is not in her cards, then as independent as possible. Of course, happiness also came to mind and I hope that for her as well.

Thanks for all of the photos and blurbs that you sent. I made a huge display of photos and also included some of your descriptions. It was more of a posterboard display. So much for the video I was going to make. I am so NOT computer savy as I'm sure you can tell from this blog.

One of the areas I would like to improve upon for future events, is for more families with WS in the area to attend. I knew of about 5 families that I invited. Dr. Klein-Tasman said she sent out around 20 invites. Well, we only had 2 other families with children with WS attend. Where are all of you?!?!?!? I completely appreciate the 2 families that attended as I'm sure most of you can relate you have an instant connection. You can "talk the talk" and just feel accepted. One family even drove up from Illinois. I would also like to improve upon the fact that I only took 4 pictures at the whole event. UGH!!!

One Last Plea...

2008-09-30T18:48:00.000-07:00

If you have a little time this week, please e-mail 1 or more photos of your kids or give me permission to use one from your blog. I am going to be working on the slideshow this weekend for the benefit and could really use a few more. So far I have 8 kids and I just really don't want every other picture to be of Emerson :)

Here is my e-mail: nbeaumier@yahoo.com
Thank you, Thank you, Thank you!!!

Wish us luck. We are starting to collect the silent auction items and I am starting to feel way over my head.

Help?

2008-09-17T12:34:00.000-07:00

We are in the midst of planning our second annual "WS Awareness Event" to raise money for WS research and Dr. Bonnie Klein-Tasman from UW-Milwaukee. Last year, we raised almost $10,000!! Dr. Klein-Tasman is such a great resource and is really devoted to helping families with the dual diagnosis of WS and Autism. As we know, these are often the families in greatest need of answers and support. Dr. Klein-Tasman told me that this donation last year helped keep her lab focused on Williams Syndrome. She has many graduate and undergraduate students from all over the country that she is training and she can really help increase the pool of experts in the field. Anyway, here is what I am asking:
1) I wanted to do a "Faces of Williams Syndrome" slideshow similar to what Laura (Michaela's mom) did recently. If you could send me via e-mail (nbeaumier@yahoo.com) a recent picture or two of your child that would be great.
2) Also, I thought it would be really cute to have lying on the tables at the benefit a picture of your child along with their first name, age, age of diagnosis, and then a blurb about them. This can be as much or as little as you would like. It could be a snapshot of their personality and/or in depth what it means for them to have WS. Make it whatever you have time for. I just thought this would really tug at some heartstrings and also some pocket books. :)

Thanks in advance and check out our website at www.williamssyndromeawareness.com

Junior Kindergarten - Mixed Emotions

2008-09-03T18:12:00.000-07:00

My sweet girl started 4 year old kindergarten today. She was so excited that she inhaled breakfast, got dressed and ready to go and then waited around for 20 minutes asking 100 times if the bus was coming because she didn't want to miss it. As I was ready to walk her up the block to catch the bus, she decided she wanted Daddy to walk her up. Are you kidding!? What!? No way?!?! All of these thoughts went through my head, but I could tell she was potentially fragile this morning so I sent her out the door with Daddy and shed a few tears alone. These tears surprised me because she has been sooooooo ready for school and I know will just love it, but I am still sad. She is so little and kind and sweet and pure-hearted. I don't want that to ever change. I want her to stay kind and for people to be kind to her. I am also sad for Emerson that she is losing her constant companion and playmate.

So anyway, of course I jump in my car and head to the school to make sure she makes it okay and doesn't get trampled by the hoards of children or end up in a 6th grade classroom. A bit paranoid, but again, she's so little. She did great, kissed me goodbye and never looked back. She is so ready to be a school kid and I am not quite as ready to let her go.

Summer 2008

2008-07-18T12:57:00.000-07:00

I can't believe that we are in the middle of summer already. What a busy summer it has been. Our new house is now feeling more "homey" with the addition of driveways, patios, and landscaping and less like a construction site. We still can't play in the yard because we haven't seeded our lawn yet, but we have been meeting our neighbors and making new friends.

Emerson continues to be busy with all her regular therapies and this summer we added weekly music therapy sessions. At the first session, the music therapist sat 2 feet in front of us, played her guitar, and sang with her beautiful, but rather loud voice. After she was done, Emerson stood up and told her "All Done". Emerson now sits a little further back and does much better.

Ahhhh, how to describe Emerson at almost 2 1/2 years old. She is pure joy and love, mixed in with a side of fiesty. She is incredibly lovable and such a snuggler. We snuggle after every nap and she lays on me and sighs and says, "mommy" in the cutest, sweetest way. She is a completely easy going, content little girl, EXCEPT when someone tells her "NO". Then she screams out, turns to me (or whomever the offender is) and says, "No Bite!". She has never actually bit me, but she lets me know that she is thinking about it.

Emerson seems to be doing well and learning and to be honest I really just don't worry about it. She is doing things in her own way, at her own pace. Her vocabulary right now is pretty big, but she really isn't combining words that often. Typically, kids start combining words once they know about 50 words. Emerson has a vocabulary in the hundreds, but really only says them as singletons. She can count to ten (minus #7), say parts of her ABC's, and most importantly, when we tell her we love her, she says, "I You Too" with her face all scrunched up. Oh, she makes the funniest, craziest faces.

Emerson is finally able to climb up and down stairs and on and off furniture pretty reliably. She is getting SureStep SMOs next week and hopefully that will improve her stance and gait. All I can say is she certainly can't sneak up on someone when she is walking.

The biggest obstacle right now with Emerson is her overly social behavior. We were at the pool this morning and Emerson loves the water. However, we spent very little time in the water, because she loves greeting people and socializing even more. She got away from me a few times and gave random legs at the pool hugs. UGH! Thankfully, everyone is always very nice, but it is very uncomfortable peeling her off of stranger's legs. Then she cries and reaches for them, like "Don't let my mean mommy take me away from you!!". She loves all, everyone, and then some. I often find her greeting and chatting to bugs like they are people. Other than that, I really can't complain. I have met more people this summer and have totally learned to come out of my more introverted comfort zone. I'm not shy, but I am now way more "out there" than I have ever been.

Future Planning

2008-06-12T18:56:00.000-07:00

Ella and Emerson had their first haircuts this month. Yes, Ella is four years old and this was her "official" first haircut. I have always just trimmed up the girls hair and it has been fine. Well, Emerson's hair was getting beyond what I can control. She literally has corkscrews coming out of every angle of her head.
It can be adorable a lot of the time, but on her bad hair days it looks like dread locks gone wrong. At the salon, I kept asking her to cut more and more of Emerson's hair and in the end, just as I suspected, you can't tell she got her hair cut.

I am working 3 shifts per month at the hospital and am enjoying it. I love being able to stay home with the girls, but I've missed being a Speech Therapist. This is just enough to keep me in the field. Anyway, I had an interesting experience last weekend. I was working with a woman in her 80s who had a stroke when in walked her 50 some year old daughter who I instantly recognized as having WS. The 80 year old mom was clearly upset that she was there because no one was with her. She starts worrying and telling the daughter that she shouldn't come to the hospital on her own and how in the world did she get there. The daughter responded, "Mom, I walked, I'm not cripple." I chatted with both mom and daughter for a bit and then another daughter arrived and took daughter with ?WS home. I was obviously curious and started asking the mom questions about her daughter and the type of care they give her. The mom was very worried about her daughter and her elderly husband and what was going to happen. Who was going to care for her daughter? I ended up finding out that the daughter did not have a diagnosis, but was always just labeled MR. I left her room, not feeling nervous, not devastated, not sad, not any other emotion that I thought I may have meeting someone giving me a possible glimpse of my future. It just made me think that Brian and I just really have to make sure we have our sh** together. That's literally the first thought that popped into my head. We are going to have to make sure that we have everything in place for our future. We will have to save, save, save and plan, plan, plan. I have every belief right now that Emerson is going to do well and is going to be able to lead an independent life. I just don't want to be caught flat footed if that isn't in her future. I really think I had this experience to remind me that while the day to day is going well, the future does need to be thought of. I want to live my day to day with the hope and optimism that Emerson is going to be terrific and surprise us all, yet plan for the future starting today that there is a possiblity that she won't be as independent and well off as we hoped for. I really think that this meeting happened for a reason. The nurse told me that the mother had been in the hospital for 3 weeks and that this 5 minute pop-in by the daughter has been her only visit. I was in that room for a reason.

Big Events

2008-05-13T18:27:00.000-07:00

We recently celebrated Ella's fourth birthday. I can't believe that I have a four year old. How is that possible?? She is a complete joy in every way. She makes us so happy every day. She is such a girly girl. She loves nail polish, loves to wear dresses, and despises jeans. We went to a trout farm fishing this past weekend and she nearly had a heart attack when we actually caught a fish. She hated it, until mommy caught a trout that happened to be kind of purply and sparkly, "a princess fish". She is also so tender hearted. After she blew out her candles on her birthday she kept asking me if I wanted to know what she wished for. I kept saying "no" that she needed to keep it a secret. After the tenth time, I said "fine, tell me", thinking she for sure wished that she would be a princess when she grew up. Well, she told me that she wished that she would "love her mommy and daddy forever." Little stinker, made me tear up.

Emerson is also growing up and seems to be less babyish and more "2" every day. She can be quite demanding and stubborn if she doesn't get what she wants. She has also thrown a few full blown tantrums lately, mostly over a pig. She has this little realistic pig that makes noises when you touch it. It's running out of batteries though so it sounds more like a sick cat. She will not put it down. I finally hid it today so she would hopefully forget it, and every time I looked at her she snorted. "Yes, Emerson I know you want your pig." When Brian came down from work today, Ella said, "Dad, don't mention the (whisper) pig!" Emerson's vocabulary is exploding and she can say whole phrases from songs. On Ella's birthday she stole the show by singing, "Happy birthday to you" and "How old are you". I nearly fainted.

Settling In

2008-04-26T12:19:00.000-07:00

I haven't posted in so long I don't even know where to start. We moved into our new home a few weeks ago and we are just so thankful and happy. It is wonderful just to have peace and not to have all the house selling worries that we had for so long. Ella had a rough couple of weeks and seemed to be on an emotional roller coaster. She would go from smiling and laughing to sobbing uncontrollably in a matter of minutes. She finally seems back to her normal even-keeled state. Emerson has settled in pretty easily, however, we are having some sleep issues that we will have to deal with shortly. Last night, for example, I put her to bed and an hour later I heard her screaming and crying. This is happening now more frequently and I'm going to have to let her cry it out eventually, but I want to wait until we've been here a little longer. We've been through this before with her and it gets harder as she gets older. I'm hoping that after a few nights of realizing I'm not going to rock her back to sleep she will get back to her good sleeping habits.

I've started working again and am happy to be back. I haven't worked in two years and I've really missed it. It will be challenging to work weekends (3 shifts per month), but I do love it so that will help. It's interesting to go back to the same job and the same people that I worked with two years ago. After Emerson was born, I was planning to go back to work. I called them to quit 2 days after I got her diagnosis at 5 months old because I was overwelmed and exhausted. She was still only sleeping for a few hours per day and was crying the rest of the time. I called my boss (and her receptionist) crying letting her know that I wasn't coming back and that Emerson was just diagnosed with WS. It definitely wasn't my most shining moment. They didn't really hear from me until two years later when I called to come back to work. Wow, have things changed. I'm so happy to be where I am now. I feel completely content and at peace with my life.

Emerson news: Well, she is definitely talking more every day. I hear new words and she is starting to combine two words. She loves to come into the kitchen and show and tell me where all of her favorite foods are, bottle, juice, cracker, nana, apple, cookie. Based on her love of food you would think she would weigh more than her mere 23lbs. She is a skinny little thing. She loves for us to sing to her and I always know what song she is requesting based on a few bars she gets out. It's really pretty cute. Her favorite is her bed time song that she requests nightly, "rock a baby". She also loves to pretend that she is a kitty and snuggles into us purring. Emerson is love.

PS. I miss Connor, Ava Jewel, and Caleb. I can't get on your blogs!!! Please e-mail me at nbeaumier@yahoo.com

Great News!

2008-03-23T18:13:00.001-07:00

This weekend we got an offer on our house, accepted it, and are now moving in two weeks!! Thank the good Lord! I am so excited and have so much to do I can hardly believe it. Hope everyone had a Happy Easter and I may be out of commission for the next few weeks.

Procrastinating

2008-03-20T17:46:00.000-07:00

I should be cleaning the house because we have a showing tomorrow, but instead I thought I should update. Our house still hasn't sold and has been on the market now for 10 months!! UGH!! Our house that we built has been ready for us since January, but we just put it on the market as well. Very depressing. I am trying to stay optimistic about this whole situation, but am very frustrated. I am tired of trying to keep an immaculate house with two very messy little girls, one very hairy dog, and a husband. Need I say more?! I am also so sick of feeling anxious all the time. Okay, now that I have that off my chest...

Recently I decided to go back to my old hospital pool speech position that I held before Emerson was born. I quit working when Emerson was so incredibly colicky. Well, now it's time to go back. I have committed to work 3 shifts per month, all on the weekend. I know, not much, but when you haven't worked for two years it seems like a lot. I will be working in acute care doing mainly swallowing, speech, language, and cognition. Most of the folks I'll treat are post-stroke, although, there is a big variety. I feel a bit rusty and will spend a bit of time training and reaclimating myself. I'm pretty excited to go back to work doing a job I absolutely love.

The girls are doing well and we are keeping busy. Ella is such a bright kid and is obsessed with learning to read. She just got it in her head that she should be doing this, so we're giving it a whirl. I'm not sure what I'm doing, but I'm trying both phonics and sight words. She is also very funny and feisty lately. I think we are all ready for Spring. Yesterday, she got so frustrated with something and I heard her say, "OH DAN!!" Well, I inferred what she was trying to say and told her to never say, "Oh Dan" again.

Emerson is such a joy and is sooooo lovable. However, she can be needy. She loves to be held and spends most of her day following me around and asking for "up". She is saying more and more words and has new ones every day. Last night after I put her to bed she started crying hysterically. I thought for sure she was hurt and ran up to see what was the matter. As soon as I opened the door, she broke out in a huge grin and said, "Oh, hi mommy!". What a stinker, but she still got a huge kiss and hug before replacing her back in her crib.

Terrible Two's??!!

2008-03-03T17:46:00.000-08:00

Emerson is changing so much every day. Most of the time the changes I see in her are so amazing. She is talking more, signing more, and walking more easily. Some changes are also occurring that are so cute, but I realize that they are WS related and will need to be worked on sooner rather than later. A big change that I've seen in her is the extreme social behavior. She is afraid of no one and everyone is her best friend. Examples that I've seen lately; walking up to a shoe sales woman who was kneeling on the floor, touching her arm, crouching so they are face to face and saying, "hi, hi, hi, hi!"; going up to a strange man and holding out her arms and saying, "up!". While this is completely adorable now and she gets all kinds of positive feedback, I've decided that I need to start setting expectation right away. I've tried to think of what is appropriate and what will work long term. I think I'm going to try and let her just say "hi" to people. No touching, no high-fives, no blow kisses, just one single "hi". I think about all of these other ways to greet people, but in a few short years they will be very inappropriate with strangers. I know that she is only two, but this oversocial behavior has come on so strong and literally happened overnight. She has no fear and loves everyone. I've seen her try and kiss strangers. Any advise from the moms with older kids would be very much appreciated.

Another big change in Emerson is the new two year old attitude. She is getting into so much trouble lately. She eats Newman's dog food, dumps his water out, plays in the toilet, drops toys in the toilet, trys to flush them down, opens our entertainment center and empties it, steals towels and walks around with them on her head. Yes, she is a complete goof ball. When I tell her "NOOO!", she now has a tantrum with throwing herself around on the floor, turning red, screaming, and growling at us. She has also put her mouth on me a few times as if to bite me, but thankfully, chose otherwise.

Forever in our hearts...

2008-02-27T12:10:00.000-08:00

My heart aches for Whitney, Troy and Brandon as they have to endure the unimaginable. My thoughts and prayers are with you and your family. Baby Blake made a huge impact on all of us in this close WS community. He will not be forgotten.

In loving memory...Baby Blake
July 6, 2007 - February 26, 2008

Happy 2nd Birthday Emerson!!

2008-02-03T19:41:00.000-08:00

My sweet baby girl turned 2 today. I am in kind of disbelief that she is actually 2 years old. What a great year she had. I am so thankful and really honored to be her mother. She is so sweet and such a little love bug. She is so much fun and is turning into quite a character. She has specific little games that she plays with me, her daddy, and her sister. I swear she does them because she knows how much we like them. She is also such an active little toddler. She is getting into trouble throwing objects into the toilet and letting toy animals take a swim in the dog's water bowl. We also blamed Ella for a week thinking that she was dumping the dog's water dish into another dish (without getting a drop on the floor!). Well, I caught her in the act and it wasn't Ella. She is feisty when we tell her "no more milk" or "books all done" and growls and has a bit of a temper.

I am loving every minute of it. She is a toddler now and we couldn't be more proud. We love you, Emerson Grace!

We Need a Buyer!

2008-01-22T12:20:00.000-08:00

Our new house is ready for us to move into and starting in March we will officially be paying two mortgages. YIKES!!! Needless to say, I am putting together my resume and getting my Speech License back in working order. I haven't kept up with it so I need to take 20 hours of classes to keep it current. We had two house showings last weekend, but so far no offers. Be very happy if you are not selling your house right now. If we don't get any offers in a few months we will probably have to put our new house on the market as well and that would make me incredibly depressed.

Emerson had her follow-up with her Feed Team and she has officially fallen off her weight chart. She had been holding strong at the 15th percentile for a long time but now with walking she is below the 3rd percentile. I told them I'm not all that concerned because as I'm sure all of you have noticed our kiddos are all pretty tiny (except for Tatum :), Lisa I will need some tips). She now weighs 21lbs, 10oz. They are now having me add heavy cream to her soy milk and told me to use lots of olive oil, flax oil, high quality peanut butters, and cream cheeses. I have been doing this all (except the heavy cream) for awhile now and it is our golden retriever, Newman, who is now about 10lbs overweight. Emerson is big into sharing.

I can't believe that Emerson will be 2 years old in less than 2 weeks. This past year went by so quickly and what a great year it was. Emerson can now walk, put objects into containers, points to 10 body parts, can say lots of animal sounds, knows about 12 signs, and is starting to say many words (this morning she said, "hug" the name of her favorite book and "dan" for dance). Most importantly, she is happy, lovable, and a complete charmer. I no longer take any development for granted and have waited many months for some of these skills and when they occur we are just thrilled. When you have a child with special needs nothing is assumed and everything is cheered and cherished. After many months of practicing, Emerson yesterday dropped a ball into a hoop all by herself. Ella turned to me with huge eyes and said, "Mom, call Daddy, Emerson made a basket all by herself!!" Pretty cute.

I am so excited for this potential Ohio get-together. Amy, let me know if I can do anything to help. It would be wonderful to meet all my cyber friends and give each of you and your kids a big hug. I know that I am not the most consistent blogger, but all of you are my sounding board, my comfort, and my support in this life with WS. Thanks for that.

Merry Belated Christmas and Happy New Year!!

2008-01-04T16:20:00.000-08:00

We had a great Christmas! The girls were so much fun, but I'm also kinda glad it's over. In fact, I had all my Christmas decorations put away on the 28th and have been working to declutter ever since. Ella is back to being her normal pleasant self. She crashed a bit after the Holidays and just benefits so much from being on a normal schedule. Emerson is turning into quite a little show woman and flirts and charms anyone and everyone she meets.

My favorite Emerson moment from Christmas is her hearing Santa come into a party three rooms away. Slowly, but also very determined, she made her way to him walking with her arms extended. When she finally made it to him, he really had no choice but to pick her up. Well, in true 1 year old fashion, the bottom lip started coming out and she was bawling within 30 seconds.

Ella has turned into such a performer and loves singing, dancing, and performing puppet shows for anyone who is willing. On Christmas Eve, she was performing a puppet show with her Grandpa when she interrupted him and told him that she would finish the performance alone because he needed to practice to learn how to do it right!!! Ahhhh, you can write this stuff any better. :)

So many good memories and also some hard times in 2007. The last 6 months have been tough, as I've lost 3 of my grandparents. My Grandpa passed away in June, my Grandma in November, and my other Grandma a few days after Christmas. It has been heartbreaking and I will miss them and think about them everyday.

There is nothing like the unconditional love and comfort of a grandparent. I have so many great memories and loved them so much it is hard to even think that they are no longer around.

I see the incredible love between my kids and the grandparents in their life and am so happy for them. They are very lucky.

2007 was a great year because Brian and I finally got to know and fall completely in love with Emerson. She was tough to get to know in 2006 with nonstop crying, but in 2007 she just blossomed and was a happy, fun, snuggly, beautiful little girl. She is constantly surprising us with what she CAN do. I can't wait to see what she accomplishes in 2008. We love her so much and would not change a thing about her!!

Ella provided us with so much joy and laughter in 2007. She makes us laugh every day and is such a sweet, patient, and caring little girl. Brian always says his best days are when he is living in a musical. Ella literally can sing an entire day away. She makes up the most joyous original songs for every aspect of the day. She has such an open mind and wants to learn something new everyday. We are so lucky to have her.

The Walker with Attitude!

2007-12-13T12:54:00.000-08:00

Thanks everyone for your positive comments. I am out of my funk and life is back to normal. I think I freaked a few people out in my family with my last post. No, I definitely do not feel that way most of the time. In fact, those feelings surprised me. I'm sure they will surface again, but hopefully not for awhile.

Emerson is now walking more than she is crawling. Here is a cute video of her walking. You also can see her new little attitude she has developed. In this instance, she did not want Ella to help her and then came over to me to complain. Ahhhh, the sibling rivalry begins!

Sad

2007-12-10T19:39:00.000-08:00

What happened to me this afternoon really surprised me and shook me a bit. I was sitting on the floor playing with the girls and I looked over at Emerson. She was simply sitting on the floor, looking absolutely adorable, paging through a book. Out of nowhere, I started bawling. I ran to the bathroom so that the girls wouldn't notice and I was overcome by feelings of heartbreaking sadness. I was simply watching an adorable 22 month old little girl look at a book and feeling devastated. I was feeling devastated because of all the hopes and dreams that everyone has for their children that are so unrealistic for me to dream for her. I was looking at her thinking that I love her so incredibly much and how unfair it is for her. What a raw deal she got. How unfair. How maddening. She has no idea. Right now she just looks beautiful, perfect, content, and happy reading her book. My heart feels like it is going to explode. Nothing is ever going to be easy for her. We are working so hard to walk and to talk and after that there is more, more, more. We will be working hard for so many years to come on so many things. On everything. I'm so sad for her, for the life that she won't know. She was sitting there looking so adorable and lovable and all I'm feeling is complete devastation. I haven't felt this much grief since she was first diagnosed. The phone rang while I was bawling and it was my best friend. I didn't pick up. I don't want anyone to feel bad for me. My heart is broken for my child and they won't understand, can't understand. I cried in the bathroom and prayed to God for some clarity. Some way to breathe again and return to my kids. I called out to Ella that I was going to get the mail. I needed fresh air. I grabbed the mail and ran inside. I have no doubt that when I looked down God was sending me a message. We received a newsletter in the mail and there was a poem on the front page that caught my eye.

Attitude
by Charles Swindoll

"The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable.

The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you ... we are in charge of our Attitudes."

Okay. I am listening and am open. I have had a great attitude about this whole WS thing. I have not let it get me down. I know that our journey with Emerson is not going to be easy, but I am not going to let it change me, my disposition, my overall attitude on life. We all have one shot at this and I am going to make my life matter, be meaningful, and most importantly be filled with love and happiness.

Don't get me wrong, I did continue to feel this pain, sadness, and pit in my stomach for the rest of the evening. I have cried now most of the night. I cried so much I have a pounding headache. I watched reality TV and ate nachos for dinner. Tomorrow I will wake up and start a new fresh day with a new attitude. I felt this grief consuming pit and will not be sucked into it. It is awful and no place for me. I want my life to be happy and fulfilled. I want my children to be happy, no more. If they are happy, I am happy. Wish me luck, but I do know that God is looking out for me.

Almost There

2007-12-08T18:42:00.000-08:00

I haven't updated in so long, I don't even know where to start. I have a nice chance right now because the kids are in bed and Brian is wrapped up in the Wisconsin vs. Marquette b-ball game.

We are doing well over here. Emerson is continuing in her progress so we are just happy and content.

Those months where we have waited for something to happen seem so long that we are thrilled with her current progress. She is walking about half the time now, though I wouldn't consider her a "walker" yet because it is still so hard for her. She is sticking with it more which is helping. Her PT made her a weighted vest and put the weight around her core which I think is helping. She only wears it 30 minutes per day, but I see her gaining confidence. She is also communicating so much more. She is using lots of signs and is just taking so much in. She is just really impressing me lately. One example is I was telling her OT the other day about her favorite book called "Hug". While I'm describing it Emerson crawls across the room, finds the book under the coffee table, picks it up, schleps it back, hands it to me, like, "Here you go, mom". We were both so excited.

Not so exciting news is that the Education Specialist from Birth to Three came out to evaluate Emerson and based mostly on interview with me (since Emerson was sick) told me that Emerson's cognitive level was around 10 months. Nope, I don't think so, wrong, not right, not accepting that information... I totally know that it is just a number and that it gets us services, but I wasn't ready to hear such a low number. Nor was I ready to feel like I am in total denial. Of course I know that Emerson is not at her 22 month age level, but there is also no way she is at a 10 month old level. Whatever, I didn't even get upset or cry about it because it just seemed so wrong to me. Thankfully, the evaluator was as sweet as pie, but I think she could see in my face that I also thought she was nuts. Funny, as I'm typing this I can feel my blood pressure rising and our 90lb Golden Retriever, Newman, tried to crawl up on my lap and licked my face. Thank you, Newman!

Ella is so excited for Christmas. Brian or I say a prayer every night before dinner and lately Ella has been chiming in, "I pray that Santa brings me lots of presents, AMEN!" What a character. She is so full of love and energy. As you can see she loves to make faces and constantly cracks us up. She really couldn't be a better big sister. She is so patient with Emerson and it's hysterical because sometimes I think she really is turning into a mini-Speech Pathologist. She reads her books and signs to her. The other day I overheard her say, "Watch my mouth, Emmie, Mmmmmonkeeeeey, Wow, good girl!"

Well, that's the news on us. We are just content and looking forward to Christmas. I think that I do need to start shopping this week. I like to procrastinate, but it will get done. Hopefully, I will get some good deals. No sale yet on our current house, but we do have a showing tomorrow. Our new home should be complete in a few weeks so we will have to figure out when we are moving. Yikes, I don't even want to think about that.

Love Bug

2007-11-13T19:13:00.001-08:00

We ended up having a rough couple of weeks. Emerson continued to be sick and ended up with a double ear infection. She was put on Augmentin and I think it gave her a gassy stomach because she was a grouch for over a week. She is finally better and back to her normal, loving self.

We had our cardiology appointment last week and Emerson was also scheduled for a sedated echo. After reviewing her charts and listening to her heart, her doctor decided to forgo the echo until next year. She sounded great and felt that it was unnecessary. That was great to hear. I had been worried because while Emerson was sick she had one instance where her lips and feet were purply-blue in color. We panicked and were about to take her to the ER when we slowed down and decided to make sure she was warm enough because she was cold and shivering when it occured. Well, within 15 minutes she regained her color. The Cardiologist told me in a technical way that she was just cold and there is nothing in her heart condition that would cause this. I was very glad I didn't go to the ER.

Emerson is doing so well lately and is taking so much in. I keep telling Brian that I feel Emerson is on the brink of doing such "great things". She is taking 6-8 steps in between objects and I can tell is on the verge of communicating more with us. She adores her Daddy and follows him wherever he goes and wants to be held and loved-up. She loves her neck to be nuzzled and we can pull her out of any cry or semi-temper tantrum with a quick nuzzle. Speaking of temper tantrums, this is new for her. Lately, if she doesn't get what she wants she lets out the shrillest, loudest scream that you have ever heard. My OT witnessed it and asked me how I handled it. I told her that if I picked her up, it stopped. I got a quick reality check from her she asked how that would work for me when she was 10. So now I am trying to ignore the behavior, walk away, and not give in. Tough to do, but the OT managed to scare me.

Here is the latest video of Emerson with her beloved rocking horse. This video shows how much she is growing, learning, and above all, what an absolute sweetheart she is. She is my heart and I think you will see why.

Sick

2007-10-26T08:17:00.000-07:00

This week my poor little girls have been so sick. It started on Sunday morning, they both woke up with fevers and Ella had a cough. Well, Ella's cough just got worse and worse. Yesterday, she went to the doctor's and was diagnosed with Walking Pneumonia. Emerson doesn't have a cough, but is so wiped out during the day and then not sleeping well at night. Maybe I should take her in to the doctor as well, but her symptoms are "really tired". It has been a long week, on top of everything Brian was out of town half the week for work. Nice timing. .

I just peeked in at Emerson who was watching Sesame Street . When I left her she was sitting upright. Poor thing.

Our new house is about 8 weeks from being completed. Now we are entering all the fun stuff. All of the millions of decisions we made, now we get to see them. I am trying not to second guess myself and just be confident in my choices. Unfortunately, our current house has been on the market since June and we have not had a call on it in about 2 months. Not good. I buried a St. Joseph and have said my Novena. In this market, St. Joseph can only do so much. :)

Other Emerson news, she is completely off the Calcilo and has been for a few weeks. She seems to be tolerating the soy milk just fine and we will get her calcium checked in a couple weeks. I had her speech therapy increased to once a week, she was only getting once a month, terrible, I know. I hope it makes a difference, but I am not overly-optimistic considering she lives with one. Anyway, her receptive language seems okay at this point. Her sounds and sorta words at this point are really limited. She says some animal sounds, cow, monkey, duck, horse, use to do dog. She once in awhile says, hi, mama, dada, ella, nigh-nigh. Oh well, I really didn't mean to complain about this, but sometimes it is frustrating that I went to school for something for 6 years and have many more years of student loans to pay off and I can't make any significant head way with my own child. In fact, it is the area that she is making the LEAST amount of progress in! I know that I just have to buck-up and she will talk on her own time when she is ready. Just wish I could help her along.

Picture Day

2007-10-16T19:07:00.000-07:00

I dread getting my girls pictures taken. It should be fun and exciting and instead I just feel nervous. I feel so much pressure to get a great picture. Sounds ridiculous, I know, but today all my anticipatory dread and fear were very founded. I started getting the girls ready about an hour before leaving. Have you all noticed Emerson's hair lately? She has the tightest curls I have ever seen. Her hair is equal part adorable and maddening. When I wash it out, it is actually quite long and goes down below her shoulders. After washing, I have about 2 minutes to get a comb through it after spraying leave-in conditioner. So anyway, I messed with her hair for about 20 minutes until I was satisfied. We get to the studio and try to keep Emerson from drooling on her outfit and Ella from peeing in her pants. I must add that Emerson at this point is all smiles. After 25 minutes of waiting they call us. Of course, all smiles from Emerson instantly stop. She stares blankly ahead at the cranky photographer who seems very put off. Ella does a great job smiling picture after picture with Emerson zoning out with her tongue sticking slightly out (not cute!) Finally, Emerson starts to cooperate a smidge when Ella proudly announces to the photographer, "I'm all out of smiles! They're all gone." She's three, she's stubborn, and she means it. Photo shoot over! UGH!!

Emerson is such a character lately and is just developing in leaps and bounds. She is so funny and now very much enjoys making us laugh. Here is a short video of her eating oatmeal which I think she really does like. She definitely knows these goofy faces crack us up. What you do miss at the end of the video is her spitting the oatmeal out into her hand and flinging it all over the floor. Too funny.

Baby Steps (literally)!

2007-10-02T17:55:00.000-07:00

Emerson has been so much fun lately. She is just an absolute charmer and is constantly showing off her "bag of tricks" to anyone who is looking her way. We were at the doctor's office today and when the nurse walked in it was, "wave, wave, arms so big, mouth raspberries, cute sniff-face with the nose (for some reason she loves this one!), huge smile". The nurse was very nice and acted amused.

Yesterday, we visited her feed team and her calcium levels are still slightly above the normal range (ionized calcium 5.44 (4.5-5.3 normal) and calcium 10.7 (8.7-9.8 normal). What the heck?! Isn't she supposed to out grow this by 18 months?? She turns 20 months tomorrow. Anyway, her GI doc and team came up with a game plan, but did tell me that they have never had a child with hypercalcemia before. Me either! The new game plan is to cut back on her Calcilo/formula concoction to about 16 oz per day and introduce more developmentally appropriate (their words, not mine) liquids via sippy cup. These liquids have to be low calcium, high protein (10% or less calcium, 4g+ protein). So far I've found a certain brand soy milk that meets this criteria, some yogurt drinks and V8 splash. We'll see how she likes this. Today, I couldn't get her to drink the soy milk from the sippy cup, but she did take it from the bottle. One step at a time. Any other suggestions from moms who have dealt with the calcium issues would be greatly appreciated.

Here is a video clip of Emerson taking a couple baby steps. She is gaining confidence every day and you can see just how proud she is!

Cabo Wabo

2007-09-17T18:50:00.000-07:00

What a busy last couple of weeks. Brian and I were in Cabo San Lucas, Mexico last week. We had an awesome time. It was a rewards trip for Brian paid for by his work(best part!). As difficult as it is to leave the girls, it is so incredibly important for us to get away and have time just the two of us. We were a couple again. Granted much of our conversation revolved around the kids and how much we missed them and how cute they are, we did manage to find some other things to talk about. The combination of sunshine and tequila makes it impossible not to have a fantastic time. The Grandmas watched our girls and said that everything went well, though, they would NEVER tell us otherwise. I know that it was both challenging and rewarding and we are so thankful to them. Brian and I were able to come home and pick up right where we left off, like we never missed a beat. That says so much about how they loved and took care of them.

Speaking of Grandmas, my mom turns the big 5-0 tomorrow and I want to send her a huge HAPPY BIRTHDAY! My mom is my best friend and I am so thankful to have her in my life. She is the most kind, caring and generous person I know. These past couple of months have probably been the hardest in her life with the passing of my Grandpa and the total health decline of my Grandma. She has handled everything with such love and dignity. Mom, I love you and strive every day to be a little bit more like you.

Now, as pathetic as this is, I want to share some cute stories about my kids. We are always laughing over here.

Cute Emerson Story - Ella loves to play pretend and a couple of nights ago we were reinacting the "Three Little Pigs". Ella was hiding under a blanket pretending to be the little pigs and, of course, I was the big, bad wolf. Emerson was sitting next to me watching the whole thing. Me: "And I'll huff, and I'll puff, and I'll blooooow your house down!!" I look over at Emerson who has huge, wide eyes, she looks at Ella and then does the cutest little "WHOOOOooooo". Ella and I start cracking up and Emerson was promptly promoted to wolf duty.

Cute Ella Story - Today at the park I am pushing Ella on the swings and as she gets going her shoes smack me square in the chest. As I'm doubled over, she calls out, "Sorry Mommy, I hit your nibbles!!"

Anyway, can you tell I missed my kids. Here is my last pathetic thing I will share. Ella started preschool last week and came home singing this song after her first day. This kid constantly amazes me!

So Long Summer!!

2007-08-27T17:39:00.000-07:00

We had another beautiful weekend at my parent's cottage. We spent two straight days on their pontoon boat and I really felt like I was saying goodbye to summer. The weather was gorgeous, but for some reason Fall is in the air. It could be the fact that Brian is counting down the days for the start of the Wisconsin Badger Football season. Weekends are now going to be lost to football. The girls did pretty well on the water, but did get very antsy towards the end. Today I made sure to stay home all day just to get them back into their routine.

Ella starts preschool on Thursday and I am so excited for her. I know she is just going to love it. I can't believe all of the forms I have to fill out just for a 3 year old preschool program. That's my excitement for the evening.

While Ella is in preschool I thought Emerson and I would sign up for a "mommy and me" type class. It's interesting because usually I really don't give Emerson's WS too much thought. Well, that's not entirely true, of course it's there and I think about it, but I don't dwell on it. Well, then today I start thinking about a music class for us through Gymboree. One class is for kids age 10-16 months and the other is 16-22 months. Which one do I sign us up for?... Emerson will be 19 months next week. She is doing very well, but is not going to fit in her age-appropriate class. They will probably be doing marching and some following directions, and blah, blah, blah. However, I certainly don't want to sign up for the 10-16 month old class and be even more depressed and feel like I have to explain why she is so behind. So my point is that I was so excited for us to have this time together and then I shut off the computer and never signed us up. I will try again tomorrow and get over the fact again that she is not typically developing (of course!). Emerson is beautiful, snuggly, affectionate, and can melt your heart with a smile. She is absolutely learning and we have had a great burst in her receptive language in this past month. She can now point on command (most of the time)to her eyes, nose, and mouth. She can also sign or make sounds for elephant (her favorite), monkey, duckie, doggie. She is incredibly charming and this morning was trying to charm her PT out of working by engaging her in a game of peek-a-boo. She was covering her eyes and then lifting them off with such great flourish. She is who she is. I want to enjoy her and enjoy life! Okay, no more dwelling!! Sheeeeesh!

Emerson's PT brought over an old plastic fisher price grocery cart. We loaded it up to weight it down and took video of our little cutie-pie pushing it around. Notice the huge bag of coffee that we used as a weight, we do love our coffee around here. This was about our 4th attempt to capture her. We have a hyper doggie and a very engaging little 3 year old who doesn't want baby sister to have all the spotlight. Anyway, this was our best attempt. Introducing the almost-walking, EMERSON! Please remember that I said Emerson was almost crawling for about 6 months so this may be a while.

Fun Times

2007-08-13T18:01:00.000-07:00

This past weekend was my brother's wedding. It was so much fun, but I am happy that it is over. Myself, Brian and Ella stood up in the wedding and it was incredibly stressful trying to figure out if my three year old was actually going to walk down the aisle. In the end, Ella took the job very seriously and did princess duty very well. I just had to get her a tiara and a few people told her that she looks just like Cinderella and she was set for the entire day to prance around like the little diva she is.We had a great time. Emerson joined us later on at the reception and was a big hit. Her headful of curls definitely gets a lot of attention.

On a totally different topic, this morning I had the ever dreaded annual exam. During it, my OB-GYN asked if we were going to have any more children. This is now a topic that Brian and I have started to give some thought to. Pre-Emerson we were going to have two children and that was that... Now things have changed slightly. Now it just makes sense for us, for Ella, and for Emerson to have another baby. I hold other babies and I still feel that pang. I also absolutely missed out on so much of those first months with Emerson (7 to be exact). She cried and didn't sleep. Needless to say, I didn't enjoy that time. Well, with that said, it is not happening for a bit. Emerson is still little and we have a house to build and to eventually move into. Our plate is full. However, it is in the back of my mind. Thinking and talking about it is the easy part. Having it actually happen without me going insane with worry is another. It took me 14 months to get pregnant with Ella. My cycle was about 45 days long and getting pregnant turned into my obsession. Finally, with the help of Clomid I got pregnant. With Emerson, I got pregnant when Brian and I weren't being particularly careful because we thought we had to try really hard and use Clomid to get pregnant, not the case. So you just never know what can happen. Also, the thought of being pregnant again is not particularly appealing to me. I had horrible nausea, fatigue, heart palpitations, and varicose veins in places that I didn't even know you had veins. The other part I worry about is all the prenatal testing options. In the past, we opted out of everything. Terminating a pregnancy is absolutley not an option for us, so what is the point. Now I reconsider prenatal testing because I would want that reassurance just to make it through the pregnancy without being a head case. Anyway, sorry for this rambling post.
Just had to get some thoughts down to see if anything made more sense to me. I don't think so. What I do know is that I love Ella and I love Emerson with all my heart. I love them equally and without hesitation. I know that I have enough love for as many children as we are supposed to have. Hopefully, things will become clearer in the future.

Update

2007-07-24T10:59:00.000-07:00

Life continues to go at a frantic pace. We sure are keeping busy over here. Our new house is continuing to come to life and is just so exciting. Along with it, however, are daily decisions on things and not enough time in the day.

Emerson is growing and changing everyday. She continues to be my little snuggler and complete "momma's girl", which I love. She now crawls all over the house searching for me and once in a while I even hear a "momma". When I pick her up she gives me the sweetest hug and breathes deeply into my neck, smelling me, and makes me fall more and more in love with her. She is now also waving and starting to say "Haaah" and "Baaah", like we live in the South. Just today, when her daddy left the room she started crying and said, "dada" and was waving. It's that cute little wave where the fingers are clenching in and out towards her own face. Now, I probably won't see that again for a few months, but that's how it goes with Emerson. I also thought there was no way she would ever attempt the stairs, but this past week I found her five stairs up our staircase just sobbing. I think she started to go up and then panicked. Poor baby. She is starting to SLOWLY cruise along furniture, but only if there is something she really wants to get. Usually it is a center-piece at grandma's house that has stones in it which she very swiftly puts in her mouth. She is such an incredibly easy child right now. So pleasant and happy.

Ella has also eased up a bit. We are still battling once in a while, but the daily tears and frustrations with her have lessoned. I have really realized that how I handle her really makes or breaks her behavior. If I get frustrated with her and don't handle a situation particularly well, she acts even worse. If I just go back to the basics, make a behavior chart and really reinforce positive behavior she is so much easier. She is so much fun and so incredibly creative that everyday is an adventure with her.

We met with Emerson's Geneticist recently and also had Emerson's 18 month appointment (a bit early). Emerson is 21.4lbs (10-25th percentile) and 30 1/2 inches (25-50th percentile). Her calcium continues to be at the very top of the normal range so it looks like we won't be trying whole milk yet. She is still on a boosted up combo of Good Start and Calcilo. I am really hoping we can be done with the Calcilo soon because it is so darn expensive.

Brian's cousin is a photographer and spent the afternoon with us snapping pictures of the girls. I made a slideshow of a few of the best ones. They are about a month and a half old, but better late than never!

Williams Syndrome Awareness Event

2007-07-02T10:56:00.000-07:00

Well the Summer Solstice Williams Syndrome Awareness Event was a big success and went off without a hitch. All of the nerves and fretting really were unneccessary. We are still getting in donations, but we think that we raised close to $10,000. All of the money is going to Dr. Bonnie Klein-Tasman's research lab. She was there and gave a 15 minute talk on Williams Syndrome and her research. Four of her graduate students were also there and really pitched in. The event was very much like a wedding, so many people to try and talk to and to thank for coming, but no really extensive conversations.
I did get a chance to meet 3 other area families with children with WS. I as well have been so apprehensive about meeting someone older with WS. I have been so disappointed in myself for feeling this way, but it really was just fear of the unknown. Well, when I met a little girl who is 12 years old with WS all I could see was Emerson. Emerson at age 12. It continues to amaze me the physical and facial similarities that our kids have. It wasn't the easiest thing that I've ever done, but the future certainly doesn't scare me. Brian and I are so completely in love, if not infatuated with Emerson, that meeting this little girl who looked like an older version of our beautiful 1 year old, what was not to love. Also at the event was a little guy the same age as Emerson, 16 months.
He was just diagnosed a few months ago and the parents still seemed in shock. I really could feel their pain and that they were still in the grieving process. We talked for a long time and I know we will be in touch in the future. And finally, there was a 17 year old girl who was very sweet and social, but I didn't get a chance to talk with her for very long.

PHOTOS: Photo 1: Emerson, the belle of the ball; Photo 2: Myself, Emerson, my brother and his friends; Photo 3: Some of my girlfriends and their new babies (we are in baby heaven over here!)

We are now just trying to get back to normal. Our new house is coming along and the 2nd floor just got built. It is so difficult not to go out there every single day to check on progress. So far, things have gone fairly smoothly and we absolutely love it. This week we are going to my parents cottage for a few days of pontooning and relaxing. Here is a picture of our last outing to Long Lake. We had to stop for some refreshments and Emerson had her first Slim Jim. I could not pry it from her hands. I let her gnaw on it for a few minutes and then pryed it out of her greasy hands when I got very paranoid about the obvious choking hazard. Yes, 16 months and belly up to a bar. LOL

Emerson continues to be a mad crawler. All she wants to do now though is stand up. She is pulling herself up on everything and has also mastered standing from a sitting position without hanging onto anything. Her legs continue to stay locked in place, she can balance standing for almost a full minute, but no signs of walking or cruising. I think that is still a bit away. She continues to be a pretty quiet kid, but we are starting to hear a little bit of giggling. We will tickle her or make the goofiest faces and 10 seconds after the fact she will giggle. She is starting to make some animal noises, panting for doggie, monkey sounds, and she can sign duckie. Slowly, I am seeing her start to catch on to things. She can imitate just about any face or mouth movement, but with no sound. Once in awhile, "mama", "dada", "baba".

Ella, Ella, Ella, what can I say about her. No one warned me about 3. We got through 2 with a beautifully behaved, polite, sweet little girl. Now we have 3 going on 16. Everything is met with resistence and then tears. It is high drama in this household. Ella is taking probably 10 time-outs a day. One minute she is making me laugh and the next minute I am shaking my head in frustration. I love her, but she is exhausting me lately. Hopefully, this week at the lake will be rejunenating for all of us. Sorry for the long post, but I wanted to update everyone.

M.I.A.

2007-06-18T11:48:00.000-07:00

I am so sorry I have not been keeping up with my blog. Here's the scoop on our lives lately. The first week in June we went on vacation to Florida. What an unbelievable time!! Brian's parents have a place on the ocean in Indian Rocks Beach, so we spent every single day at the pool. Long way to travel to go to a pool, but after trying to go to the beach a few times we pretty much gave up. Ella wanted to have nothing to do with the ocean and is such a girly-girl we kept hearing, "ick, ick, eeek!". Emerson, on the other hand, is not so afraid of anything and tries to eat pretty much everything. After, digging numerous sea shells and other unmentionables out of her mouth, we decided the pool was the place for us. Ella absolutely loved it and by the end of the week was much braver using just her water wings to swim in the pool.
Emerson also enjoyed it, but in a much different way. We could not keep her awake!! It was probably mid 90's which was just to hot for her and the constant sound of the ocean (which by the way is what plays on her sound machine for naps and sleep, oops!)we could not keep the child awake. She slept in her stroller for most of the vacation. We also got to Disney world which was the highlight for Ella. She was in princess heaven! Her jaw was literally dropped for most of the day there. Very fun.
So overall, a very relaxing trip except for the last day. Here's the run-down. We left too late for the airport and were trying to speed through traffic to get there on time. Except that there was a traffic jam so Brian was weaving in and out of traffic to catch our plane. All of the weaving in and out got Ella car sick and she proceded to throw up all over the carseat and car that we were 20 minutes from turning in to the rental car agency. I have never seen so much puke in my whole life, I didn't even know where to start. Thankfully, it was just from being car sick and not the flu so it wasn't as nasty as it could have been. Anyway, Brian very smartly pulled into a hotel overhang and they were nice enough to provide us with cleaning materials. We get to the airport with 30 minutes to get through security and catch our plane. Well, no such luck. Our flight was delayed for 3 hours!! All I was thinking was, "What in the heck are we going to do with 2 overtired kids at an airport for 3 hours???" We decided to go dinner to try and occupy them with food. Great idea, except when we left I realized I left my purse at the airport restaurant. When I ran back to our table, GONE! After asking everyone and their brother if they saw the purse, a bus-boy ran to the back and retrieved it, WHEW! Well, we did make it home by the wee-hours of the morning, exhausted and ready for a vacation. :)

That was the good news. When we returned home, we found out that my grandpa who was on hospice after a long battle with lung cancer was not doing well. We went to go see him the day after we got back and were able to say good-bye. It was really the hardest things I've ever had to do. My grandpa was a wonderful man, so much fun and so full of life. He was a huge part of my life because my mom had me when she was just 17 years old, so needless to say my grandparents played a very large role in my up-bringing. He died two days later. While we have been so sad to see him go, I am glad his suffering is over. He is in a better place. I did his Eulogy at his wake and funeral service and have realized that I am stronger than I give myself credit. It is amazing how if you dig deep enough you will find strength and peace.

This week we are in full benefit preparation. The event is this Thursday and I hope that it goes off without a hitch. I feel as though I really need to prepare to say something at the benefit. I think that I can now talk about Emerson, WS, and what our family has been through without crying, but you never know. We created a website at www.williamssyndromeawareness.com that talks about our story and also shows where all donations will go and the type of research that Dr. Bonnie Klein-Tasman does. I wanted to put together a board at the donation table that shows the "faces of WS". I am wondering if some of you, my blogger friends, would give me permission to print a picture of your child from your blog so that I could create this. I would love to have Emerson's picture up there with all of her "cyber-friends". Plus, our kids are just so dang cute! Let me know.

I am sorry I haven't commented on your blogs lately. I have been incredibly pre-occupied and admittedly a bad blogger friend. I have kept up with all of your blogs (thank you so much for the distraction) and you and your kids are always in my thoughts!

Super Speed

2007-05-17T17:38:00.000-07:00

Life is going by so incredibly quickly. I feel like I have so much to write about, but little time to do it. Emerson continues to do amazingly well. She seems to be developing in leaps and bounds. Crawling has just opened up her world. She is exploring the world around her with gusto! She loves to get into whatever Ella is playing with. She tries to grab away any toy that Ella has in her hand. Needless to say, Ella has not
been too pleased with her baby sister lately, but we are thrilled. Check out Ella's little grump face above. I should get her in acting lessons. :) Emerson is no longer the little girl who sits contently with whatever we put around her. She has also started pulling herself up to a kneeling position and then to a stand. You can see the effort that it requires, but she wants it and is willing herself to make it happen. She is also so much more engaged in all the baby games we have been playing for months. Now she will play patty cake, peek-a-boo, so-big, and "If you're happy and you know it". Can you tell we are just beaming over here!!

Other great news is that we are having a Summer Solstice party to raise money for WS research. And well, it has taken on a life of its own. We are in the throws of planning this event and could really have a few hundred people attend. I have been contacting local families with children with WS, collecting items and services for a silent auction, and praying that we are not in over our heads!! We are going to be giving the money to Dr. Bonnie Klein-Tasman out of UW-Milwaukee. Here is her link to show her current research: http://www.uwm.edu/~bklein/research.html
We are so lucky to have her so close to us and we finally got to meet her this past week. She is incredibly smart and has vast experience with children with WS. My husband and I were peppering her with questions and she had explicit answers with research to back it up. Emerson was a hoot in Dr. Klein-Tasman's lab. She was babbling up a storm, looking around the room throwing sweet smiles and in general was just plain showing off. Brian and I were like, "Who is this child?" Normally, she is pretty quiet, but here she decided to have a little babbling conversation with the
researcher. Dr. Klein-Tasman told us how wonderfully Emerson seems to be doing. She is very engaged with both people and objects. Exploring freely, but checking in with us once in a while. Brian and I just shrugged our shoulders and thought, "You know, she really is doing well." It is always just so nice to hear and frankly, you can't hear it enough. A few months ago, Brian and I were very frustrated. We were not seeing any progress and Emerson seemed so disengaged with us and the world. Boy, have things changed. Anyway, Dr. Klein-Tasman is going to attend our fundraiser along with a few of her graduate students and give a short talk. Wish us luck with this fundraiser, we will need it!!

Big Day!!

2007-05-06T17:53:00.000-07:00

Well, today was certainly a day I will never forget. We had Ella's 3 year old birthday party and she was just in her element. It was a princess themed birthday party which was very appropriate for our little Cinderella. Ella is just such an absolute joy and she just knows how to light up a room.
Everyone is her friend and she wants all to have a good time. The most memorable moment for me is when she sang "I'm three-ee years old" with the utmost conviction.

The other most wonderful thing happened today is that Emerson started crawling!! This morning out of nowhere she crawled from one end of the room to the other. She is so proud when she gets to where she wants to go. It is the sweetest thing I have ever seen. She is now officially into everything and I will have to give my house a once-over to see if my baby-proofing is up to code. I get tears in my eyes just thinking about her. What a great day!

Emerson is really on a roll developmentally. Even before crawling today she has been just moving so much more. She is also now babbling much more. We are also starting to get some varigated babbling which makes me happy. She can imitate just about any single syllable. She also loves to make clicking noises, raspberries, and she and her dad have lots of fun with him twiddling her lips. She just thinks that is so cool.For some reason also after her dad does that with her she babbles so much more.

It's great oral motor stimulation for her. Overall, she is still a pretty quiet kid, but she is starting to like the sound of her voice. Emerson is also starting to sign "more" with lots of cues when we prompt her with some sweet treat. We are having so much fun as we are starting to see some progress after months of not too much. All of our hard work is starting to pay off.

Playing Catch Up!!

2007-04-10T18:19:00.000-07:00

I have been terribly preoccupied lately and a horrible blogger. Brian and I have decided to build a house and just signed the contract today. For the past month or so I have been running around trying to make decisions on the house and have also been preparing to get our current home on the market. The thought of putting our home up for sale with an almost-3 year old and a 1 year old makes me want to just run and hide. I can barely keep up with it on a normal basis let alone try to get it in "show quality". We have also had serious internet connection issues and I have been without internet off and on for the last couple of weeks. Needless to say, I have missed you all and just got caught up in everyone's life. I've been wanting to comment to everyone to tell you all how much I have enjoyed reading your blogs so here is a brief synopsis:
Abi- What a Easter you guys had, yikes!! I'm so sorry you do not have the support of the whole family. It is tough when you are walking on eggshells (even if it is on Easter, ha!).
Ava- I was so thrilled to hear her surgery went well. Her little eyes look beautiful and how incredible that she is now seeing things almost for the first time, CLEAR!!
Avery- Wow, she is just doing so well. She just seems to be making progress in leaps and bounds. I think it is natural to take time away when you get caught up in your own life. How wonderful! I can't wait to hear from you guys and will love your blog whether you post daily or monthly.
Brady- How cute are he and Michael...I can't believe how much alike they are looking. Brady's cheeks look just super-kissable. I would be very distracted by them all day. :) I already am by Emerson's. They should be in a big cheek contest together.
Clare- What beautiful Easter pictures. I can't believe you only have 4 more weeks. Your pregnancy just flew by for me!! How about you? :))
Daven- He is just so super-cute. I love his new pictures you posted. You're right his photo shoot went well. He is a big boy going to the chiropractor. I felt so proud of him reading your post, but my heart broke for him at the same time. Why do our kids have to go through the things they do? It's just not fair.
Erik- I always love hearing what you have to say. Thanks for sharing your real thoughts on WS. I am dealing with some of these same thoughts on sharing photos of Emerson and also just sharing information about her in general. When people tell me how cute she is or make any comment on her I wonder if they are saying it because she looks different. I am not proud for thinking this. This is getting more difficult for me as she gets older and she keeps her cute little "pixie" look. Thank you for always being so brave and validating me and my thoughts.
Szabi- Sounds like you guys are keeping very busy. I just have to say I keep looking at the picture of Szabi and his Playboy and crack up every time. How funny are you!!
Tatum- Your girls are just the cutest. I loved the matching Easter outfits. Funny story how Emma outed you about the Easter basket. Better luck next year.

Well, I will try to post again soon on Emerson. Nothing has really changed lately with her. She continues to be super-happy and becoming more and more interactive every day. It is interesting though, because her development for me is truly on a relative scale. We got together with friends this past weekend and their baby girl is 4 months younger than Emerson and was whizzing by her trying to keep up with the bigger kids. My little Em, was content quietly sitting by herself watching the world go by. She just kept her eyes on the kids and sat without a peep or attempt to move. She is such an easy baby now, but when I really think about it I do get sad. I feel like she didn't even attempt to interact with them or move towards them because she couldn't.

Anyway, I missed all of you guys and had fun catching up.

Peek a boo!

2007-03-21T13:27:00.000-07:00

Well, this is a great time to post to prevent me from going to give Emerson a great big hug and rocking her to sleep. I just peeked in at her (she is supposed to be napping) and she was sitting up in her crib and trying to peer between the slats in her crib. She caught a glimpse of me and gasped and started clapping. Oh my, am I in love!! She is just blossoming everyday. Now that she learned how to sit up on her own, she does this strange sitting-type roll to get where she needs to go. She has also started to move her legs a bit more when she is standing. She is not cruising furniture yet, but she is not as stiff and rigid as she used to be. Isn't it great how all of these little developmental steps can be so rejoiced!! She is now giggling more, especially for daddy, and is great at giving wet and sloppy kisses.

Sleep continues to go well and for that I am eternally grateful. There was a time, not long ago, when I would have given anything for where we are now. We put her to bed now wide awake and she has to figure it out. She goes to sleep on her own and stays sleeping all night. Who would have thought?!

We have just had a slew of check-ups and medically things are going ok. Her calcium levels have continued to creep up as we've added foods with calcium to her diet. Her levels are now at 11.3 so now her GI team wants me to eliminate milk products from her table foods, but keep her formula/calcilo concoction the same. I am cancelling her ear tube appointment because we have been ear infection free for the past month and a half so I'm going to push on that since we are headed for Spring. She just had her year normal doctor appointment and is at the 25th percentile for height and weight which is just pretty darn good and for that I am grateful. I will be trying to find a pediatric dentist for her shortly because her top front teeth are coming in looking pretty discolored (kind of brown looking) and that makes me very sad. Maybe they need to seal them or something...

Here are some photos of my girls when I left them alone (never a good idea) for a few minutes.
Ella definitely thinks that Emerson is her little doll. Look closely to find her under the hat amongst Ella's other friends. I think Emerson's expression in photo 2 says it all.
Ella gives Emerson so much love and attention. Sometimes it definitely can be a bit overwhelming, but sometimes 2 year olds are overwhelming. Gotta love that innocent face though!

P.S. I just peeked in again on Miss Em and she konked out on her back, arms above head. Don't you think that is the cutest way for a baby to sleep! Happy Wednesday everyone!

New 1 Year Pictures!

2007-03-06T19:22:00.000-08:00

Here is my little sweetie at her 1 year photo shoot. Anyone else dread going to get these pictures taken? Emerson was such a good girl that day. Very easy going and smiling at all the kids and photographers running around. Of course, all the smiling stopped as soon as the camera came out. Oh well, she looks beautiful with her serious face. :)

This past week we went to visit Emerson's Cardiologist. After weighing her, (19lbs, 2oz), he listened to her heart and felt that her murmur sounds exactly the same as it had her previous 2 appointments so he doesn't suspect any worsening. Great news! He is working in conjunction with Em's Nephralogist to try and decrease her blood pressure, but told us that if we can get it around 100 that would be great. Apparently, blood pressures in kids (and adults I suspect) with WS are difficult to control with medication.

Interestingly, Emerson's Geneticist called me this past week and told me another family with a 1 year old in this area was just given a WS diagnosis and asked if I would be willing to talk to them if they were up for it. I said, "of course". She told me they were having an extremely hard time with the diagnosis and the severe feeding issues that their child has. This child is on a feeding tube. I really do hope they contact me. I feel like I am over our "diagnosis shock" and may be able to help. It would also be great to know another family with a child the same age as Emerson.

I feel lately Emerson is having more days where she is just really "With It". I don't know why one day can vary so much from the other. Some days she is so interactive, rolling all over, really trying to crawl, trying to get our attention with her sweet smile, and playing enthusiastically with all of her toys. Other days, she is just the opposite. Just kind of blah. She will complain if I put her on the floor and doesn't want to move from my hip. I love the days when I see a real spark in her eyes and hope they start happening more and more frequently. This past week we have had a lot more "with it" days and Emerson has started going from crawling position to sitting up. She has done it now probably 10 times and each time Brian and I are grunting along with her to do it. When she makes it, she looks very proud and often starts clapping right along with us. Emerson has also really taken notice to when her mama leaves the room. She really wants to be with me all the time. It's so nice to feel that emotion from her.

One thing I really long from her is a great belly laugh. She definitely has a soft giggle, but we have yet to hear a true loud baby laugh. I am so sad when I hear babies younger than 6 months laughing more exuberantly than Emerson. Most of the time, Emerson just looks at us with mild amusement. Oh well, can't have everything at once. One more thing to look forward to with her.

Reverse Progress

2007-02-27T13:30:00.000-08:00

Why as moms do we torment ourselves with guilt? I have read many posts about what more we could be doing and I am constantly reminding myself that I am doing as much as I can. Emerson's Speech Pathologist just left our house and I am feeling immensely guilty. Why??? Because he reminded me of the things that I should be working on with Emerson to facilitate communication. Of course I know all this being a Speech Pathologist myself, but for some reason I have been focusing on her crawling goals. I also have an incredibly demanding 2 1/2 year old who really wants my undivided attention 24/7. There is simply not enough time in the day to complete all that I want to with Emerson. I remind myself that she is not going to start crawling and talking tomorrow if I work with her for 15 more minutes today. Okay, big deep breath and let it out. Guilt all gone!!!

You may be curious about the title of this blog, "Reverse Progress". Well, Miss Emerson has decided that crawling or attempting to crawl or even lifting herself up onto all fours is waaaaaay too difficult. She tries for a little bit and then puts her head down and cries her eyes out, when I pick her up she sighs loudly as if to say, "Why did you make me do that!!!" She is quite a character. Her PT this past week also laughed how after every manuever she had her do, Emerson needed a tight hug. I think it is less emotional and more sensory related. She always feels better after a tight squeeze. So I will be very surprised if she suddenly starts crawling, she really just kind of prefers to be held. :)

While I was still feeling guilty about Emerson and what more we could be doing for her, Ella handed me this book to read to her...

Is There Really a Human Race? by, Jamie Lee Curtis and Laura Cornell

Is there really a human race?

Is it going on now all over the place? When did it start? Who said, "Ready, Set, Go"?

Did it start on my birthday? I really must know.

Do I warm up and stretch? Do I practice and train? Do I get my own coach? Do I get my own lane?

Do I race in the snow? Do I race in a twister? Am I racing my friends? Am I racing my sister?

If the race is a relay, is Dad on my team? And his dad and his dad? You know what I mean.

Is the race like a loop or an obstacle course? Am I a jockey, or am I a horse?

Is there pushing and shoving to get to the lead? If the race is unfair, will I succeed?

Do some of us win? Do some of us lose? Is winning or losing something I choose?

Why am I racing? What am I winning? Does all of my racing keep the world spinning?

If I get off track when I take the wrong turn, do I make my way back from mistakes? Do I learn?

Is it a sprint? A dash to the end? Am I aware of the time that I spend? And why do I do it, this zillion-yard dash? If we don't help each other, we're all going to CRASH.

Sometimes it's better not to go fast. There are beautiful sights to be seen when you're last.

Shouldn't it be that you just try your best? And that's more important than beating the rest?

Shouldn't it be looking back at the end that you judge your own race by the help that you lend?

So, take what's inside you and make big, bold choices. And for those who can't speak for themselves, use bold voices.

And make friends and love well, bring art to this place. And make the world better for the whole human race.

Gotta love it. I sometimes feel like God is whispering to me and in this case I was definitely being hit over the head.

Where is the time going?

2007-02-19T18:01:00.000-08:00

I have been very neglectful of my blog lately. I don't know exactly what I have been doing, but keeping busy is one of them. We finally have warmed up a touch here in Wisconsin. In fact, Ella's Auntie took her to the zoo today because it was a balmy 40 degrees outside!! Sometimes I definitely think, "Why do we live here???" Don't worry mom I'm not moving anywhere.

Very exciting sleep update: Well, about 12 days ago I decided to give this whole "Cry it out" thing a go. The first four nights were absolute torture. Emerson cried each of those nights for 1 1/2 to 2 hours. It was the type of panicked, awful, sobbing, hyperventilating cry that made every fiber of my being ache. I couldn't believe what I was doing. How could I be such an awful, terrible, uncaring mother. I just layed in bed and shook with self-doubt. I did not, however, go in her room. After 4 nights, I told Brian that this technique was clearly not working and we needed to come up with a new game plan. We decided to go in after about 20 minutes of crying and rub her back and calm her down. Well, the child decided that wasn't necessary and slept through the night for the next 7 nights in a row!!! Incredible! I can't tell you how thrilled I am to finally be able to get a full night sleep (well, in theory but now I have to learn to sleep through the night and turn off the brain, but that's a whole different subject!). The last two nights Emerson has woken up each night and only cried for 10 minutes and then put herself back to sleep. So that is awesome. The other huge thing I am doing is trying to always put her in her crib awake which is also working. So needless to say, I am still a huge proponant of "crying it out". It was pure torture and absolutely maddening, but it worked. I'm not saying we are completely out of the woods, but I do think she know gets that I am not coming to get her at night. YAH!!!!

Look Who's One!!

2007-02-05T17:06:00.000-08:00

Emerson Grace turned 1 year old on Saturday. We had a big birthday party for her complete with family, friends, pooh themed party ware, lasagna, and of course, the cake. Emerson was in her element that day. I think she knew it was HER special day. She was just so smiley and happy the entire time.

I think I've mentioned in previous posts that I am so happy to get this first year under my belt. This passing of her 1st birthday was more symbolic of a new start then the actual new year. I think when I look back I've really blocked out quite a bit of it. For those of you who also had the extreme colick as part of the WS picture you know what I mean. It is absolutely necessary to forget all of that. I feel like the past 5-6 months I have really bonded with Emerson and every day fall more in love with her. She definitely has a sweet, endearing personality that comes shining through more each day. She has a very intense look of love when she is really feeling you. She looks at you with complete adoration and then comes in for the kiss which is usually with mouth wide open, tongue out.

Emerson loves her johnny jumper and is in complete heaven while jumping. She has a perma-grin and is crazily trying to jump across the room. If jumping were a possible mode of transportation we would be very mobile right now.

Emerson also has turned into a snuggler!! For the first 7 months, she never put her head down on my shoulder. I think she must have been so uncomfortable she just couldn't relax against us. She was so rigid and always pushing away. Now one of her favorite things is to get her back rubbed. She loves laying against us and us rubbing her back and head. She is complete jelly and makes the cutest sounds of complete contentment.

She is so cute when her daddy tries to give her kisses. She watches him very intently with a little grin and then at the last minute turns her head, playing hard to get. She then lifts her head up with her eyes still squeezed shut and face all squinched up and lets him get her.

Emerson has also turned into quite a little babbler. Her repetoire of sounds grows each day. She is really going to give her sister a run for her money when it comes to talking.
Emerson is a complete doll and gets so much attention everywhere we go. Random people stop and tell us what a beautiful baby we have. We know. We love her. And we are so happy to have her. We love you Emerson! Happy 1st Birthday!

Almost 1!!!

2007-01-29T08:42:00.000-08:00

Thanks everyone for all of the wonderful words of wisdom regarding Emerson's sleep issues. A few days after I last posted Emerson slept through the night so I took that as my sign that we would run with this and if she woke up I would let her cry it out. The 1st night was okay, she woke up once and cried for about 45 minutes and then slept the rest of the night. The 2nd night she slept through the night. Great, except that she woke up the next morning with 103 degree fever!! I took her to the doctor and she once again has an ear infection. We will be seeing an ENT in a few weeks because she is having chronic ear infections and never gets rid of the fluid in her ears when she is healthy. This week both my girls developed horrible colds and coughs. So needless to say that was the end of our crying it out. Thank God she slept through the night when she woke up with a fever because how awful would I have felt if I let her cry the night before. So here we are, me and my sick girls. What do you think? Are we getting enough sleep at night!! Oh well, I'm optimistic and when she is healthy we will give it a go again.

Emerson has been doing a little more babbling which is music to my ears. She has such a low voice that when she grunts she sounds mad all the time. Now her babbling is softer and a little higher pitched and just so dang cute!! She is also still so close to crawling, but I know I have been saying that for 3 months and may be saying it for 3 more months. It seems like she wants to, but get frustrated. She also really lacks confidence which I knows is strange to say at 11 months of age, but its true. If she falters at all she acts really scared and it can set off crying.

Emerson is going to be 1 year old on Saturday!! I can't believe it. Her first year has been the longest, fastest year. I know that makes no sense, but I don't know how else to describe it. We have come such a long way from the dark days of her non-stop crying. I also can't believe that a year ago I was still pregnant. There was recent discussion on the listserve about how many of the pregnancies of kids with WS were so similar. My pregnancy with Emerson was not pleasant. I had a heck of a time complete with heart palpatations, sickness, varicose veins, and a general unease. I couldn't gain weight even though I went to bed nightly with a huge bowl of nestle pre-made cookies and ice cream. I started to be followed by a Perinatologist at about 32 weeks because I kept measuring so small. He was a real gem.
I remember once I told him that I could not lay on my back because it made me nauseous. He told me to just lay back and if I puked make sure I did it not towards him!! Anyway, at 38 weeks after he did an ultrasound he called my OB and told her to do an emergent C-section that day because of lack of fetal growth and low fluid levels. Being my optimistic self, I was nervous but really not very worried. I just figured everything would be fine. It was for the time being. We delivered a healthy 5lb1oz baby girl. She was tiny and perfect. We had no idea what was to come. Anyway, here are some early pictures of Emerson. I love the one where the Soothie looks almost as big as her head!! She actually is actually almost 1 month old in that picture

Dream a Little Dream

2007-01-15T17:55:00.000-08:00

I know from what I've read that it is very common for children with WS to have sleep issues. Just when I think we are making some progress and Emerson just might start sleeping through the night, she starts to get up 2-3 times a night again. This past week for some reason Emerson is getting up once in the middle of the night, but it is taking me up to an hour to get her back to bed. It is as if she is suddenly wide awake in the middle of the night. Tomorrow we get her blood pressures checked since she started her propanolol. If her blood pressures are normal, I am going to start thinking about letting her "cry it out". I am a big believer in the book "Healthy Sleep Habits, Happy Child", unfortunately there is no section in the book for kids with WS. :) Dr. Weisbluth, who authored the book, is big into scheduled naps, early bedtimes and letting the baby "cry it out" if they are still waking up after 9 months old. It makes sense to me, if I keep going to her in the middle of the night, how will she ever learn to put herself back to sleep, on her own. Ella is a great sleeper and always has been. I put both to bed at 7pm, both take great naps, SO WHY WON'T SHE SLEEP THROUGH THE NIGHT!!

This is a post to seek advise. Are your kiddos sleeping through the night? If so, how did you do it? My trepidation with letting her cry it out is that she gets incredibly worked up to the point where I swear she is hyperventilating. If I do let her cry it out I swear I will have to sleep in the basement.

If Emerson were a "typical" child and was not diagnosed with WS I would let her cry it out in a second. Like I said, I am a big believer in that philosophy and I've already had success with it. Do I need to be handling this different? Anyway, any suggestions or thoughts are appreciated...I need some sleep.

Frustration

2007-01-08T12:03:00.000-08:00

Yep, it's just one of those days. I really wish I had some large owner's manual for Emerson that told me how to weave through all of these questions that I have about her. Here's a quick update: A few weeks ago we had her appointment with her feed team and they were OK with our concoction of 16oz Good Start and 8 oz of Calcilo per day. They want me to start adding 2-4oz of yogurt per day to up her calcium intake. Her tested levels continue to come back high normal range. Well, they just called me and told me that her Vitamin D levels are dropping 19 to 16 (normal range is 20-100) so they want me to put her on a Vitamin D supplement called Drisdol. From everything I have read you do not want to put kids with WS on supplements that contain calcium or Vitamin D. I called her geneticist and she agreed with me and wrote a letter to the feed team explaining that we were going to keep things status quo. Sidenote: I too may be "fired" from the GI clinic soon since I never follow their recommendations... Anyway, am I off-base here? They also told me that at 1 year of age (next month) we need to have a talk about milk because apparently her need for calcium is going to double. When I read others blogs it seems like most are on some type of formula (with or without Calcilo) after their first birthday. Who should I be consulting on this? Trust me, I would love to go off the Calcilo since my insurance decided not to cover it. They just informed me that they would only cover it if she were being fed through a feeding tube. Ughhhhhhhh!! Emerson was also just put on Propanolol for her high blood pressure. Anyway, sorry for this exasperated post, but I just wish I knew what exactly to do for her.

Other than the above, life really has been going fine lately. Emerson seems to be doing pretty well, although her ears are still bugging her from her ear infection. Took her in and they are fluid-filled, but no longer infected. She continues to make some progress, she can now hold herself up on all fours for about 30 seconds, but doesn't seem to know how to coordinate crawling. I've started to hear some babbling when she cries (ma-ma-ma-ma) which I will take. Other than that we really haven't had too much change in development. But, as long as she is happy we are all happy. :)

Interestingly, I am currently reading a book called "Love You, Mean It". It is about 4 women whose husbands were killed in the WTC on 9/11. It is a book about their fall into deep despair and how the friendship and bond they formed with one another pulled them out of it. I really thought of all of you, my blogger friends, and how our friendship based on less than desirable circumstances is really helping me cope with this new path in life. It's not that I don't have great friends and family, but they don't always "get it". Recently, I was telling a girlfriend how Emerson can almost pull herself up. She put Emerson in front of a table expecting her to do it. I then had to tell her that she can pull herself up, propped on my leg, with her balance in place and legs and feet properly aligned, but then look at her go!!! I was very impressed, but I think my friend was thinking, "well, she's not really pulling herself up." Thank you all for being out there as my support system of people who "get it".

All I Want For Christmas Are My Two Front Teeth

2006-12-27T12:10:00.000-08:00

True to the song, Emerson got her two front teeth on Christmas day. I'm sure more truthfully, her mom, busy with the hustle and bustle of Christmas, just happened to notice them on that day. One is already 1/3 out, so clearly it had popped through much earlier. Possibly this endless drippy nose and ear pulling has been due to the teeth rather than the cold I had been blaming.

Christmas was incredibly fun this year. Ella has such a sweet, fun spirit to her that Brian and I kept saying how we just have to remember each second. We have never taken so many pictures. Santa showed up at one of our family Christmas get-togethers and Ella stood by his side stroking his hand with a look of complete awe. She then sang made up songs the rest of the night about how great Santa is.

Emerson was also thoroughly enjoyable. She has become just the sweetest, easiest baby. We saw her for the first time work really hard to get her sister's attention with cooing and smiling initiating it all on her own. She also has an adorable new smile where she crinkles her nose and squints her eyes.

As the holidays are coming to a close and we are looking forward to a new year I have been taking a look back at the year. What a year!! It was (by a long shot) the most challenging year of my life. Most of it was spent trying to figure out what in God's name was wrong with my baby? Why is she so miserable all the time? Then once we had an answer, I spent much of the year trying to figure out why this happened to us. I still look at Emerson once in a while and wonder what she would be like if she just happened to have a few more genes on her 7th chromosome. The good news is that I am definitely doing that type of no where thinking a lot less. I hope this new year brings more acceptance, more healing of my heart, less what-ifs, and more fun. The one thing I know for sure is that I love my husband and my girls with all my heart and that I look forward to every moment that I spend with them. I want to enjoy each moment and take nothing for granted. Happy New Year Everyone!!

Busy, Busy

2006-12-18T12:24:00.000-08:00

What a busy weekend!! Brian and I attempted to go out for a fish fry with the girls on Friday night. (Side note: Are fish frys popular elsewhere or is that a Midwest thing?) Anyway, we haven't really been out to eat with both of the girls since Emerson was born. Since she cried for the first 6 months of her life we never really left the house. It's funny because if we go do something we are always so worried how Em is going to act and she is now just a very easy baby. Two year old, Ella, is actually the challenge. She really does not understand the concept "inside voice" and thinks everyone should get to know her. We also lately cannot get her to stop singing so all throughout dinner she was serenading the restaurant with her latest renditions of "Three Blind Mice" and "Do You Know The Muffin Man". Very cute for us, I'm not sure how the other patrons felt.

Saturday night we had a Christmas Party at one of our best friend's house. In the past, these were completely wild events ending up with one of us doing something completely embarrassing and subsequent blackmail footage because it was likely not remembered. We used to drink the latest martinis and likened ourselves to the gals on "Sex in the City" with all of us claiming to be most like Sarah Jessica Parker. Oh, we used to be so much fun!!! This year, the party broke up around 10:30pm and I drank 1 very strong cranberry drink that just made me exhausted. Three babies were also in attendance and one pregnant friend. Now we trade kid stories and recipes. :) A much different kind of fun.

We saw Em's Feed Team and GI doctor this morning. Always interesting. They want me to start adding a little yogurt to her diet to get her Calcium intake up just a touch. They also told me that in two months when she turns 1 we will have to re-evaluate her calcium intake because it almost doubles. She jumped up on her growth charts which was great to see and now weighs 18lbs4oz.

This week will be much preparation for Christmas. Lots of wrapping and cookie baking. This week also Brian's parents are moving back home to Wisconsin from North Carolina and we are just so excited because we have missed them so much. I am so excited for Ella and Emerson because there is nothing like love from Grandma and Papa. There may also be a few more movie nights in store for Brian and I with more babysitters available. YES!!!!

I have some cute pics of the girls, but we got a new camera and it will take me a bit to figure out how to get the pics to the computer. Right now I am just too tired to try and think, must sleep...

Playing with Navy Beans

2006-12-13T19:13:00.000-08:00

Emerson had OT today and the therapist put her in a big bowl of navy beans. She loved it and kept digging her hands in and then very slowly pulling them out. I love the intense look she gets on her face when she is really focused in on something. Her mouth opens up and the tongue comes out. She kept trying to eat the uncooked beans and my paranoid mommy side came out and I finally told the OT, "Okay, we're all done with that." Emerson doesn't appear to have any sensory integration issues so far, at least they haven't manifested themself yet. She does love to spin around and around in her johnny jumper. When she would do this, I would always stop her because it made me ill to watch. Her OT told me to let her spin because it is good for her occular and vestibular development. "Okay little Em, spin away!!" I've worked a lot in the past with children with sensory issues so I thought I would put some ideas out there that are fun to do at home. 1)shaving cream in the bath tub 2)shaving cream on windows 3)making jello jiggler cut-outs 4)ball pits 5)indoor sand box 6) washing a baby doll and toy dishes with dish soap and making bubbles 7) making a sensory book with various textures on pages (ie. sandpaper, satin ribbon, noodles, etc...)

Emerson had been having a hard time eating in her high chair. She would go into some type of strange self-stimming behavior where she would put her chin down, stick out her belly, and pump her legs up and down. Needless to say, not a lot of eating was getting done. We then tried feeding her in the Bumbo, but I gave up with that because she became a slimy mess and was ruining all of her clothes. We finally figured out that putting her in the little Fisher-Price portable booster seat with it's own little tray was the answer. She fits perfectly in it and is the right size for her to practice with her finger-foods. It's amazing how much better she is getting at actually getting the food in her mouth. When we first started it was almost comical watching her try to figure out where her mouth was. She would get so mad and just toss her cracker to the side. She is definitely improved! By no means does she have a pincer grasp, but she is getter there. I am so appreciative of every little step of development we conquer. Each of these small steps is going to take so much work and effort. When she gets frustrated and puts her head down into the floor in frustration, I just want to hug and rescue her. We just love her so much.

Low Tone

2006-12-08T17:03:00.000-08:00

I hate low tone!! Low tone is what makes so much so difficult for our babies. Low tone is what is making Emerson fall further and further behind. When you hold her she just feels a bit flimsier than certainly other babies her age, but also younger babies. I was discussing with her OT ways to combate low tone and current research in the field. Right now there are very exciting studies on new ways to treat hypertonia. Increased tone usually presents itself with rigidity and spastic muscle movements. New ways such as using electrical impulses and pharmacological approaches are currently being tested. However, neither of us could find any new research for treating low tone. Definitely, more needs to be done in this area.

Besides a bad cold that is making both of my girls miserable, Emerson is doing well. She seems to be close to crawling, but I have been saying that for 2 months now. She is getting up on her hands and knees and rocking for a split second before crashing down. We just increased her PT to hopefully keep this progressing. Her PT told me to focus on working her trunk rotation to increase her lateral stomach muscles needed for crawling. She is so funny when she works with the PT, she cries and complains the entire time, very dramatically putting her forehead into her hands to complain. Then, when the PT picks her up she instantly stops complaining and looks at her with her big blue eyes and coos as if to say, "I really just like to be held and snuggle, don't make me work!!" Emerson is not babbling yet, which I am really trying not to take personally being an SLP. ;) She does have various grunts that can communicate a whole lot. Without looking at her I know if her graham cracker just fell and is beyond reach or if the dog stole it. Two totally different grunts of frustration. She is getting more and more expressive every day. She is also loving her johnny jumper and can clap whenever I say, "clap, clap, clap".

Emerson saw her Nephrologist last week. Nothing new came out of the appointment besides the fact that she has high blood pressure which we already knew. We are going back in two weeks to possibly have a CT done of her kidneys and she will likely go on blood pressure medication.

We are getting so excited for Christmas. Ella has been almost beside herself. She has been telling me that she wants a train and a bike for Christmas. I am not sure where she came up with that.
I am trying to convince her that what she really wants are paints and doll house toys since that is what she is getting. Wish me luck with this one. Here is a picture of the girls watching their first Christmas TV special. Think they liked it? Have a good week everyone!!

Sharing some thoughts

2006-11-30T19:18:00.000-08:00

I haven't posted in awhile now. I have tried, but everytime I have sat down at the computer and have caught up on the other blogs and the listserve I have been too emotional. I end up just stepping away from the computer, taking some deep breaths, trying my best to hold back tears, and putting on a smile and happy face so I can be a good mom to my girls. Everything that is happening to little Gage is just tough. He has been in my thoughts and prayers since finding out all that he has been through. I pray for continued strength to him and to his family. Please see Nancy's blog titled "Erik" for details on Gage. Life is so fragile. I really just look at Emerson and think "Who cares if she has WS, I can handle that. Please let her heart be strong and let there be no hidden problems that are being missed!" I pray for all of my blogger friend's children that they remain safe, healthy and strong. All we can do is have faith.

I then read Nancy's blog titled "Can" and watched the video (it did take me 3 times to get through it). How incredibly inspiring. It makes me want to be the best person I can and do everything humanly possible for both of my children. What an amazing father, I just want to give him a big hug.This blog is challenging for me at times like this because I am the type of person that holds everything in. I am not outwardly very emotional. Speaking or writing down how I feel does not come naturally or easily for me. I am jealous of the ease with which some of the other blogs appear to be written so openly and honestly. I am slowly beginning to realize that keeping in emotions (particularly huge emotions when it comes to Emerson and her WS) is so unhealthy. It has slapped me in the face recently when I had to go on a beta-blocker because I have been having such severe heart palpatations. I wore a holter monitor for 24 hours and had 4500 extra heartbeats in that time frame. Not good. I am coming to the conclusion that I need outlets for my emotions and how I feel. I need to have a place to worry and seek solice. On the other hand, I know that I am a true optimist at heart. I will always try to look for the silver lining and want to see positive at the end of the day. So I hope I've provided some insight into me and why I don't post as often as I think I should or would like to. I am definitely taking better care of myself lately. I am making sure to get time away from the girls. I'm taking yoga. I'm trying to read more. And most importantly, I'm trying to see Emerson for just her and not always her WS. I am actually trying to think about WS less. I know that may become harder to do in the future. For right now, she is a happy baby and has been such a joy lately. I am more in love everyday.

Cute Emerson Story: Emerson has been smiling for a few months, but only unsolicited for the past few weeks. The whole family usually acts like complete morons to get one of her beautiful smiles. Well lately, I've been noticing that she is giving the biggest smiles to someone special all on her own. Who is the object of her affection? Newman, the family dog. When he lumbers into a room she smiles, giggles and then turns away shyly. Yes, she even flirts with him. What does he do to deserve this unsolicited affection. Well, he knocks her over, licks the drool from her chin, rests his massive head on her butt, and steals her biter biscuit when she's not keeping a close eye on it. Apparently the rest of the family needs to change their approach.

Genetics Update

2006-11-21T17:52:00.000-08:00

After waiting 1 hour to see the Geneticist, the shakiness (so far) is nothing to be concerned with. The doctor thought that it is probably a combination of her low tone and the increased calcium in her system due to us now mixing in regular formula. She wants me to monitor her and that shakiness is really only concerning when it cannot be stopped either physically or with distraction. This is the gist of her rather long explanation. So all good news, even though I felt like I was probably over-reacting. Thankfully, it was Emerson's pediatrician who saw the shakiness as well and sent us to the Geneticist. While we were there we also went through her plan of care and everything looks on track. By the her 1 year birthday she will have to see an Opthamologist and very soon a Nephrologist for her high blood pressure. They also took her stats and are you ready, she weighed 17lbs 5oz. A very big girl in the WS world!

Other good news is that Emerson does not have to have an MRI. Her Cardiologist overlooked a CT scan she had in the summer and Emerson does not have a double aortic arch. She has a normal "abnormal" called an aberrent right subclavian artery. This is apparently nothing to be concerned about. So really we just have to get her blood pressure under control.

Thanks for all of your responses to my last post. They definitely set my mind at ease. There is something very reassuring knowing that some of us have had very similar experiences. Thanks for that!

Under a Microscope

2006-11-20T13:27:00.000-08:00

Boy, are our kids under a microscope. We not only have appointment after appointment, but Emerson also has me scrutinizing her every move. Our biggest change lately has been switching over from Calcilo to regular formula. She was on 100% Calcilo for about 2 months and huge change was seen in her demeanor. She became a bright eyed, relaxed baby. Well, at her last GI check-up, her calcium levels still came back high (just mildly hypercalcemic). Her docs were concerned about this because where is this calcium coming from, they concluded she must be pulling it from her bones. Long story short, they had me start slowly reintroducing regular formula back into her system. We were doing great this past month with really no adverse affect and then we got to 3/4 formula 1/4 Calcilo and she started getting cranky. Some of the old behaviors started reappearing, rigid crying, tensely holding her hands across her abdomen, more fussing, poor sleeping. Oddly enough, her calcium came back just fine. So who knows, I feel like excess calcium definitely adversely affects her system even if the calcium numbers aren't showing it. From what I understand, they really don't know why some children with WS become hypercalcemic. Definitely an area where further research is needed.

Tomorrow we are going to see Emerson's Geneticist because I have also been concerned about her shakiness. It kind of comes and goes, but she appears jittery when reaching for objects. Last week for three days she also was strangely shrugging her shoulders like she was shivering. Now it is gone, thank goodness. So of course, thoughts of neurological problems or seizures come to my head, but maybe she just had a muscle kink. ;) Can low tone also cause shakiness? Sorry for this rambling post, I have just had these issues on my mind. I have also thought do I examine Ella as closely? I know that I do. If Ella was strangely shrugging for 3 days I would be calling the Doctor as well. I so wish that I didn't have these concerns and I could just enjoy my daughter without scrutinizing her, but I also don't want to overlook anything.

On a lighter note, I got away this past weekend on an overnight shopping spree to Chicago with my mom. We had such a nice time and it was so relaxing. We got a jump on Christmas shopping, ate sushi, and relaxed. What a perfect get-away. It was the first night that I have spent away from Emerson and it was much needed. How nice to sleep without a monitor attached to my ear. Thanks Brian for being such a wonderful dad to your little girls!!

We really are lucky.

2006-11-12T11:16:00.000-08:00

As I was leaving Emerson's 9 month old appointment yesterday, the doctor called to me, "Nicole, Emerson is so lucky to have you, Brian and Ella as her family." I replied to her, "No, we are so lucky to have her." That was the first time I have said that and really, truly meant it. Don't get me wrong I love my daughter very much, but I haven't associated the word "luck" with her. For a long time as I was still grappling with the WS diagnosis, all I could think about was how "unlucky" I was. For Pete's sake, with odds at 1/20,000, how could I possibly have a child with a diagnosis of Williams syndrome. If I won a large sum of money at those same 1/20,000 odds, people would consider me extremely "lucky", so because I have a child with WS does that make me "unlucky". I really don't feel that way until I get that sympathetic look when I tell someone new about Emerson's diagnosis, it is a look of "unluckiness". How can a child be anything but a blessing. Even a child with something as "unlucky" as WS. I feel like in the five months since finding out she has WS, I am no longer dealing with the "why me's". I know that it just is what it is. Our path in life has shifted slightly and we are going to do the best we can with it. She has taught me so much already; the strength of my relationship with my husband, the blessing of un-ending patience, how it is better to ask for help rather than try to appear like I have it all together, and the love and importance of my family.

I guess I'm just feeling particularly reflective today because of her 9 month Well-baby appointment. Yesterday, the Williams syndrome diagnosis once again just slaps me in the face. Before today, I was basking in the fact the Emerson doesn't cry quite as much, is eating better, is more interactive, and is starting to make some good physical gains. And then along come the 9 month developmental questions (ie., Is she crawling?, pulling up, playing patty cake, playing peek-a-boo, blah, blah, blah) and my answers, "no, no, no, no, no, no, no, no, no, and no". How depressing... However, when I really got to thinking about it, WHO CARES!! We are happy. My family is healthy, safe, and content. Emerson is just going to do things at her own rate and in her own time. We are learning and growing from her. She already has taught us to slow down and to really appreciate life. She has taught us to enjoy the miracle of growth and development. We relish smiles and celebrate the seemingly smallest of accomplishments. We truly enjoy both of our children. I have no idea what the future holds for Emerson or for that matter Ella. What I do know is that as long as they live in a home that is warm, safe, and full of love they will succeed to the fullest of their potential. What else can a parent ask for.

Candy, Candy, and More Candy

2006-11-01T19:42:00.000-08:00

Happy belated Halloween everyone! We had such a great time with it this year. Ella was just in her element. She dressed as Dora the Explorer and just could not stop looking at herself in the mirror. She was just flabbergasted that she could look so different. I on the other hand was just so shocked that I have a child old enough to trick or treat. I had one of those moments where you just reflect and think "Wow, this is my life! I have a child running up to houses, yelling "trick or treat""!!

Emerson was less than amused being Minnie mouse. She definitely did not see all the fun in dressing up. I also included a family picture, not our best mind you, but I thought that it is nice to see who is writing this thing. So here we are...

Side note:

Yesterday, Emerson and I were playing "So Big" and I swear she threw her hands up in the air. It just happened once and I've since done it with her approximately 200 times and she hasn't repeated it since. Oh well, I hope I wasn't delusional from my sugar-high :)

What is that smell??

2006-10-30T10:45:00.000-08:00

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!

Chow Down!

2006-10-23T10:58:00.000-07:00

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!

Fall Fun

2006-10-17T18:06:00.000-07:00

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!!!

Visit to the Cardiologist

2006-10-13T18:06:00.000-07:00

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.

Introducing Emerson Grace

2006-10-11T12:06:00.000-07:00

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...