Wednesday, October 31, 2007

Happy Halloween...

Sophie had an absolute blast today. She started her day off with waking up Haley (not so much fun for Haley), but Sophie always lights up when Haley is around. Then she had a great day at preschool and got to wear her Halloween costume. Her therapists said she was very interactive and was able to pay attention for a little bit during storytime before she got too restless. She made a lot of eye contact and just seemed to be in a very happy mood. She fell asleep on the way home from preschool and took a great nap. She woke up in a great mood and played outside for awhile before dinner. Then we went trick-or-treating for a little bit. It was a relatively nice night and she enjoyed playing on the front porch and checking out all the trick-or-treaters. She just loved hanging out and seeing all the different kids come by in their costumes. She is so relaxed at home. Home is so much of a comfort zone for her that she can really open up and explore. It is so hard to explain in words the mood she was in. It was just incredible. I wish everyday could be this fun as I am sure Sophie wishes too.

Tuesday, October 30, 2007


Sophie seizures have been getting better meaning we see less and less each day!!! But why??? It seems the more carbs we give her, the less seizures she has. Is this why we are seeing less seizures??? Or is it that she is just outgrowing them??? Or is it because she is sick??? In some kids, being sick reduces seizures or it can increase seizures or it can not make a difference. So many variables. I really don't care why as long as she stays on this pattern!!! I am scared to be hopeful. Sophie has been battling daily seizures for over 18 months now. How I long for just one day that she does not have any seizures. JUST ONE DAY. JUST ONE DAY WHERE I CAN SAY...NO SEIZURES TODAY. One day at a time, right? Then I can hope for 2 days, then 3 days...

Wednesday, October 24, 2007

Yet another ER visit (not to be confused with my last post)...

Sophie woke up around 10pm Monday evening with difficulty breathing. She was trying to cry but couldn't because she could not catch her breath. She had been a little congested the last couple of days so we tried steaming up a bathroom to help clear her airways. This did not work so we took her outside to breathe in some cool air. This helped a little but she was still having difficulty breathing. So we called the pediatrician's exchange number. A nurse called us backed and listened to Sophie's breathing over the phone and told us to immediately take her to the ER. This time we decided to take her to a different ER than the last 2 times.

Sophie was immediately admitted into the ER and was diagnosed with croup. We had a feeling that this was what it was but since she did not have the distinct barking cough we were unsure. The doctor said Sophie was in stridor and was given a dose of steroids and a breathing treatment. Wow - what a difference this made. Her breathing immediately sounded better and she was no longer in stridor. After the treatment, we had to wait 90 minutes to make sure she did not relapse. So we turned off the lights, laid in bed and took a little nap. Around 2am, Sophie was released.

She still is not feeling well and now has a constant runny nose. If she even sees me with the suction bulb in my hand, she starts crying. I never realized how strong or limber she was until I had to hold her down myself while suctioning her nose. I have to use every limb on my body to achieve this. She can twist and turn her body in such a way that it makes it almost impossible to do this myself. It's either that or wipe her nose every 5 minutes. If I don't catch it in time, then she rubs it all over her face...yuck!!! She also cries when she has a deep cough which doesn't help her runny nose at all.

Oh, and our ER experience was so much better. Everyone was very nice and competent.

Saturday, October 20, 2007

Another ER visit...

Last Tuesday, Sophie fell out of bed, hit her head and cut her face right above her right eye. It bled pretty bad and it looked like it probably needed stitches. Of course, as soon as I picked her up she was fine but I was crying hysterically. Oh, the guilt!!! Grandma Debbie immediately came to the rescue and drove to the ER with us. Daddy pulled up right behind us. Luckily, she did not need stitches but they were able to use liquid skin adhesive to close the wound. What an ER experience!!! I am glad I waited a few days to post this...

It all started with the nurse coming in with a gauze pad full of numbing gel to put on her cut. So we laid Sophie down on the bed and held her arms down. I thought maybe the nurse was going to use a q-tip or something to spread the gel on Sophie. No - she just stuck the entire pad on Sophie and the gel starting running down her face and into her eye. Then about 15 minutes later, a med student came in to take a look at the cut to see if it needed stitches. She took the gauze pad off and wiped the gel off to take a look. She said that it did not need stitches and just needed steri strips. I asked about liquid skin adhesive since it is easier to maintain and at first she did not know what I was talking about and then said that she did not know if they used that here. So then about 15 minutes later, the doctor came in with the med student and asked her how long the numbing gel has been off. She looked at Brandon dumbfounded and so Brandon said about 10 to 15 minutes. The doctor said the numbing gel probably wore off by now so that he would need to put more on. They both left the room and came back a few minutes later. The doctor whips out a needle to numb the area. He sticks Sophie 4 times around her cut while she is screaming hysterically and also accidentally pokes her with the needle about an inch about her cut. Then we lay her down so the doctor can use the liquid skin adhesive to close the wound. I am holding her head still. Brandon is holding her arms down. Grandma Debbie is holding her legs down. In other words, she is not moving. The doctor proceeds to put the adhesive on Sophie and proceeds to almost glue her eye shut along with his glove along with a crease about an inch about her cut. So he gets everything unstuck and we are good to go. Hindsight, what was the reason for sticking her with a needle 4 times (5 if you count the accidental poke) if you are just going to use adhesive to close the wound. Getting stuck with a needle has to be 100 times more painful than holding the wound close to put adhesive on it. Oh well. It is over now and hopefully there will never be a next time which I will now be prepared for.

Friday, October 12, 2007

Thursday, October 11, 2007

Happy 2nd Birthday!!!

Wow - I can't believe Sophie is 2 years old today!!! The first year of her life seemed to have last forever but this past year has just flown by. She has accomplished so much this past year. It seems each day she learns something new. I love this age...for the most part. It is so exciting watching her grow and figure new things out. Her personality is really emerging and her facial expressions are so adorable. On the other hand, she has become so demanding. So very demanding. It is great to see her know what she wants but that can be so exhausting. It is hard to draw boundaries with her but I am sure with a new baby on the way that it will just naturally happen. I love her so much. It didn't happen overnight with me. I remember when she was first born and I loved her and adored her but not like now. She fills my heart with so much joy.

Sophie is so blessed to have so many people love her. Thank you all for the birthday wishes. We have enjoyed opening the cards and reading them to her. It means so much to us to know so many people care about her.

Happy 2nd birthday my toddler girl!!!

Wednesday, October 10, 2007

She finally did it...

She finally decided to put some blocks in a be exact - 12 blocks in all. She did this during developmental therapy but I have yet to get her to do it again. STUBBORN!!! Hmmm...I wonder who she gets that from!

Her walking is getting more steady. Last week, she was walking all around the patio without assistance. Her body awareness is increasing. She would walk to the edge of the patio and realize there was a drop down and would stop and walk the other direction. She is great about scooting down the steps inside the house. Before, she would just try to walk off things and wonder why she would fall. We were also practicing having her drink out of a regular cup. She spilt it all down the front of her but then she reached down and picked up an ice cube!!! What balance!!!

Holding steady...

Sophie's seizures have finally stabilize on the 2:1 ratio of the diet. We are holding steady to give her a bit of a rest before we take the next step. Unfortunately, she will not be off the diet before her 2nd birthday but I have a 2:1 ratio cheesecake recipe so she will have a birthday dessert to dig into.