Sunday, March 30, 2008

Lots of pictures...

Sophie, Daddy and Elsa...What an exhausting day!!!

Sophie, Mommy and Elsa...Sophie loves to touch and hold ANYONE'S hair when she sucks her thumb. All she needs is the littlest amount of hair and that thumb goes in her mouth.

Elsa and Sophie...Sophie is very big into licking things nowadays. Unfortunately for Elsa, she loves to lick her head. Sticking her fingers into Elsa's mouth was just a little added bonus ;)

Sophie stealing Elsa's pacifier. Oh well, Elsa refuses to take the pacifier anyway (or a bottle right now - I'm in big trouble with that one).

Elsa and Haley...Elsa is already looking up to her big sister.

Sophie is trying to reach the cheese puffs on the top shelf.

Sophie loves climbing on everything and anything. She watched Haley climb up a slide once and she was determined to do it herself.

Despite the snow in the background, it was actually a nice day outside. Sophie walked from our back patio, down a couple of steps, and followed the grassy area where the snow melted around the house to get to her swing. She hates the snow. She did this all by herself. That took some logic for her to figure out how to get to her swing without walking in the snow.
Time to go in.

Here are pictures from Sophie's last hospital stay. Here she is oblivious to what is about to happen to her. Just hanging out in her pajamas and snacking on some trail mix.

Friday, March 21, 2008

Where do I begin...

I have not posted in so long about Sophie's development. She is doing INCREDIBLE!!! She does something new every single day!!! She just amazes me.

Physically...Her balance is getting so much better. She climbs on anything and everything which is very scary at times. She is able to go up and down the stairs by herself. She usually walks up the steps by holding onto the spindles or bracing herself against the wall (in other words she is no longer crawling up the steps) and she usually goes down the stairs by sliding on her butt which is good for safety issues. If she is out somewhere else and it is only a few steps, she can walk up them without holding on to anything and if there is something to hold on to she will try walking down the steps. She is also able to pedal on her tricycle, kick a ball around and bounce on her trampoline.

Cognitively...She understands almost everything we say to her. It amazes me everyday of how much she understands. I will tell her to do something that I did not specifically teach her and she will do it. She is picking up on things just by hearing us talk. Though she does not seem to understand what we are saying to her when it is something she does not want to do - that is how much she understands. On the other hand, it is sometimes hard for us to understand what she wants. That is where the frustration comes in - for all of us. Sophie is starting to throw temper tantrums which is very age appropriate! Most of her temper tantrums revolve around food. She knows exactly where her snacks are in the pantry and she does not take no for an answer. Also, at dinner, it is sometimes hard to figure out what she wants to eat even though she is an incredible eater. She eats almost anything. But if you try to give her a bite of something that she does not want at that moment, she can have a complete meltdown.

Fine motor skills...Just a few days ago, she started putting her plastic coins into her piggy bank. That takes a lot of fine motor skills to line up the coin just the right way to drop into the slot. Of course, we have been working with her on this for quite some time and Sophie just so nonchalantly walks over and just starts doing it on her own. That is Sophie for you. She loves to do things out of the blue on her own terms.

Speech...She is learning sign language. Her first real sign was "more". She uses the same sign for eat and drink so we are working on changing her sign for drink. She can sign bubbles, baby, cry, all done and milk. I am sure I am probably missing a few. She also does some signs for which I do not understand. I am not sure if she is starting to make them up herself or if it is things she is trying to imitate but she is just not doing it correctly. It is so wonderful that we are starting to be able to communicate without having to point at everything. She is also starting to imitate sounds. When asked what a cat says, she will say "mmmw". Not quite meow but close. She will also repeat "lalalala" when asked.

This post does not do Sophie justice when it comes to her development. The list can just go on and on. She has just improved leaps and bounds. It is all the little things she does and understands that amazes me.

Sunday, March 09, 2008

First IVIG treatment...

Sorry I did not post sooner. We left for the hospital at 6:45am on Wednesday morning and did not get home until 11:00am on Thursday. Needless to say, it was a very long 28 hours. We were only suppose to be there until late afternoon on Wednesday.

Sophie handled her first infusion fairly well...just a little nauseous. It was getting the leads for the EEG and the IV started that was the hard part. She screamed for at least an hour straight. The nurses kept commenting on how strong she is. By the time they actually started the infusion, it was 11:00am. Since this was her first infusion, they wanted to do the infusion at a slow rate which would take about 9 hours. Well, when the doctor came by around 4:00pm on Wednesday, he suggested we stay the night since we were going to be here so late anyway. He wanted her to be observed for a few hours after the infusion and also wanted to collect further readings on the EEG. Since the hard part was already done, we agreed.

When we got home on Thursday, I gave her bath, she ate some lunch and then took a nap. By the time she woke up from her nap, she was back to her usual self. She is such a trooper. If only I could bounce back so quickly. She just amazes me. Only time will tell if this treatment will work as it takes awhile to build up the immunities. I will keep you all posted.

Thank you all for your thoughts, prayers and kind words. Thank you especially to Grandma Debbie for watching Elsa and coming to the hospital on Thursday. Thank you Uncle Jason and Aunt Colette for coming by the hospital so Elsa would not starve (Brandon tried giving Elsa formula on Thursday and she refused to drink it but luckily we arrived home soon after) and bringing us lunch.

Tuesday, March 04, 2008

IVIG update...

I decided to matters into my own hands. Last week, I made an appointment with a pediatric hematologist. We met with him last Wednesday and he said we could start the IVIG treatment as soon as possible. By Thursday, I had a call from his office saying everything was coordinated with the hospital in order for her to get the IVIG treatment and EEG. Our appointment is tomorrow morning!!! Can you believe that?!? Nothing ever happens that quickly...especially without several phone calls.

The first treatment would take all day since it would be given slowly to see how Sophie reacts. If she tolerates the first treatment well, the rest of the treatments will be much quicker. Usually, they give the treatments in the office. Since their office is in a pediatric cancer center (very heartbreaking seeing those kids there), it is setup for such treatments with a big play area and televisions. But, since I want Sophie to also have an EEG at the same time (to see how her brain reacts to the treatment), we had to coordinate efforts with the hospital and she will receive her first treatment in the hospital.

Please keep Sophie in your thoughts and prayers tomorrow. It is going to be a very traumatic day for her since she will be confined to a hospital bed with numerous leads (for the EEG) glued to her head along with an IV. But as always, I know she will be a trooper and be back to her happy self by the time we get home.