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

Wednesday, March 21, 2007

Peek a boo!

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!

Tuesday, March 06, 2007

New 1 Year Pictures!

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.