Good Doc visit

Emma went to see Dr. Zeller, her neurologist yesterday. The last time he saw her was in June, so quite a lot has changed. He is such a good doctor. He makes the parents kids feel so at ease with his funny Donald Duck imitations and calm demeanor. He adjusted her meds a little bit and wrote out some prescriptions for other stuff and referred her to a pediatric GI for her reflux and poor digestion. Unfortunately, there's just not a lot he can do, except try to make her comfortable.

We gave him a brochure about Emma's Hugs. He was glad to see the information and shared with us his dream come true about Camp for All he founded for children with medical issues. It just so happens that is one of the camps we have spoken with MD Anderson about sponsoring, so we were all excited to hear of the connection. We also gave him a flier about the benefit for Emma on March 21, which he was happy to hear about as well.

We're still trying to figure out things to make Emma happy. She continues to be fussy a lot of the time. We're going to pull out the baby swing a friend loaned us today and see if she likes it. I hope she's not too big for it.

Stay warm, and have a great day!

Sweet Memories

My sweet friend, Tamara gave me the idea of posting some precious pics from the past. Hope you enjoy them as much as we do...

Goings on around here

Today was a really fussy day for Emma. She didn't want to do anything but cry for her speech therapist. Her OT and EIS were at the house this afternoon and made her move and groove in ways she was not all too fond of, thank you very much. I told Gerry I thought I heard Emma call her the devil. ;)

I got a call today from my midwives letting me know my glucose test came back abnormal, so I have to do the whopping 3 hour test next week! Oi...tops on my list of favorite things to do does not include getting poked with a needle three times in one day! I'm breathing, I'm breathing. I hope that test comes back normal!

Emma has an appointment with her neurologist on Thursday. He hasn't seen her since June. Quite a lot has changed since then. My baby girl has gone from running around to mostly lying around now, from eating tons of solid food to mostly holding down pureed or baby food, laughing to crying. I wonder if he will be surprised. I have spoken with sweet nurse Nancy from BDSRA and have written down several questions to ask at the appointment. Hoping all goes well. I have no doubts it will.

Funny thing...watching my 6 1/2 and almost 5 year old box with the Wii. We received one as a family gift for Christmas, and the kids are loving it! Luke is pretty much a pro-bowler, and Carleigh is a mad woman in the boxing ring. I can't wait to get the Wii Fit and see what funny stuff will come with the hula hoop contest!

Quote of the Day

So tonight we're sitting around watching Luke show his latest talent of sucking his nostrils together. I comment about her "nostrils," being too small for the trick to work and Carleigh says, "I didn't know I had a nostril. I just thought I had a hole in my nose so I could stick my finger in and get out the boogers!" At which point Kelvin and I about fell on the floor laughing.

What talents do your children possess? Please, do tell.

Have a great weekend!

Udpated benefit information

Check out the post on Emma's Benefit for updated information! Click on the highlighted words, or click on the flyer in the sidebar. Have a great weekend!

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Another Day in the Life

Emma had a good day with her therapists. Since we only have a couple of more months with her current therapists, it seems we're all kind of thinking back to where Emma was when they started with her, and now we're all amazed at how quickly she has regressed. Life is full of changes. Emma and I will meet with the new teachers and therapists in a couple of weeks to decide what kind of services and where she will best be served in the school district. Kelvin and I are watching her body change daily. She is sleeping more, uncomfortable more of the time, losing more muscle tone, losing more vision, and not able to chew her food now. She is totally dependent on us. She is a complete angel and we are blessed to have her in our lives. Her brother and sister are so sweet to her (most of the time.) Carleigh wrote her the sweetest note the other day. I guess she was getting a head start on birthday wishes...


The note says, "Dear Emma. I love you very much. Even when you put your hands in your mouth. I love you. Happy Birthday to you." The little people are Emma and Carleigh. We try to keep Emma's hands out of her mouth because they tend to get raw in between her fingers. We give her her pacifier instead, but she prefers to put her hands in her mouth anyway. I'm sure her constant hands to her mouth is just an involuntary motion.

Stay tuned for more information on Emma's Hugs. Things are starting to fall into place.

Have a great day!

Back in the Swing of Things

School started back today. I have to admit, I was really enjoying not getting up until 8. I could get used to that! The big yellow limo pulled in front of the house just seconds ago and picked up Carleigh. One down, one to go! Luke goes back to school today too. Today is a therapy day for Emma. We get to see some of her favorite people. I wish the therapy was for more than just trying to maintain and keeping her stimulated. I wish more than ever that she would start improving. Wouldn't it be incredible to start hearing her speak, and clap, and laugh, and see her cutie pie personality again, and watch her run around chasing and calling after her big brother and sister? It's pretty heart breaking for Kelvin and myself right now. Her disease progression has been so fast, especially in the past couple of months it seems. She has lost so much so quickly. I know God has a plan, I just wish it included a miracle healing here and now. It's hard as I sit and hold her trying to sooth her fussiness, all the while feeling the new life in me kicking, pushing and moving around. Emma woke up around 3 this morning for some reason. Kelvin was such a trooper to get up with her after we tried getting her back to sleep for an hour or so. She's sleeping soundly now.

We've been getting things cleaned out around this place. I have some serious nesting going on. We had some wonderful ladies in the house before Christmas who rearranged some furniture and décor for us. They transformed the formal living room into the new play/toy room. They were so great! We appreciated them tremendously! Things are starting to take shape quite nicely. We also had some serious yard work done in the backyard. As beautiful as all the landscaping was, it took up a huge chunk, really most, of the yard. The kids just didn't have much room to run around and play. So, we had two humongous trees taken out, as well as two very large sections of landscaping. The kids and I watched in amazement as our backyard grew before our eyes. I'm kind of hoping the carpenter fairy will stop by and transform the dog kennel into a cool playhouse. The kids would absolutely love it! I've also gotten a pretty good start on cleaning out my closet...just about finished actually. A couple of our sweet babysitters came by the house the other day and helped the kids get their closets and rooms organized! Yippee! We love you Jamie and Meagan! My darling mother-in-law and niece and nephew came over the other day and helped me take down all the Christmas decorations. What a wonderful treat!! Now I just need to tackle the bookcase and pantry, and figure out where in the world I'm going to put Cora's clothes. I have a couple of ideas. We'll see if they work. I have a little while to think about it still; around 89 days to be exact! I don't have any clothes to worry about yet since I gave all those pretty pink little baby clothes away! Good thing I have some good friends with some cutie pie little girlies who can maybe pass down some of their clothes to Cora.

Well, off to tackle the rest of the day! Have a good one!