Life with Ella and Emerson

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

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Location: Wisconsin, United States

Monday, January 29, 2007

Almost 1!!!

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

Monday, January 15, 2007

Dream a Little Dream

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.

Monday, January 08, 2007


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".