Life with Ella and Emerson

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

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Location: Wisconsin, United States

Thursday, November 30, 2006

Sharing some thoughts

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.

Tuesday, November 21, 2006

Genetics Update

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!

Monday, November 20, 2006

Under a Microscope

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!!

Sunday, November 12, 2006

We really are lucky.

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.

Wednesday, November 01, 2006

Candy, Candy, and More Candy

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 :)