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, December 27, 2006

All I Want For Christmas Are My Two Front Teeth

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!!

Monday, December 18, 2006

Busy, Busy

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...

Wednesday, December 13, 2006

Playing with Navy Beans

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.

Friday, December 08, 2006

Low Tone

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!!