Another successful IVig treatment

About a week and a half ago, Sarah started a sharp and steady decline in her motor skills. Perhaps it felt like so drastic because the four weeks prior were the best we'd seen Sarah in a year. We called the doctor and he suggested we push up her next treatment by a couple weeks, asking us to come in again for another IVig treatment. We think this is what is helping Sarah do better, but as soon as the drug wears off (usually around 4 weeks), her symptoms come back quickly.

The fact that this particular drug is helping so drastically is both good and bad. Good, because they have found what is helping her. Bad, because they don't know really WHY it's helping her. The bad antibodies that are in her blood stream (originally from the cancer) should be fought off by your own body's immune system. However, Sarah's isn't doing that. So, the IVig treatment is basically taking 10,000 different blood samples, extracting out the immunoglobulins from each, and injecting all of them into Sarah's body. All these other immunoglobulins are fighting the bad antibodies. So, this is good, but its kind of like a band-aid to the real problem. Jen asked the doctor about the long term implications, and was told that IVig is can be a long term maintenance type of drug for other ailments.

We are very grateful that this particular drug is working. We pray that it keeps working. Ultimately, we pray that Sarah's own immune system will "kick in" and start fighting on its own.

Disclaimer: all the "doctor" talk is simply my attempt to communicate what has been told to me. So if you are a real doctor or nurse, feel free to correct any of my lame explanations.

Survivor Man

Caleb- "Mom, can I put my lips on the tree like survivor man?" Can you tell the kids have a new favorite show?!

Horse Race

Yesterday Caleb informed me that he had a race he needed to go to. So, he got dressed in his running shorts and shoes with his golf shirt. It was so cold that he decided he also needed his Terps sweatshirt. Usually the "races" he has to go to are running races. Well, he informed me yesterday that this was a horse race, not a running race, and that it was in New York and I needed to drive him there. (We are taking the three older kids to NY for a night this weekend. I think he's excited!) He was all excited until we were "ready to go". He was not buying the "pretend" car I was providing him. He really wanted me to drive him around in the van. Silly boy! After a few tears I convinced him to show Sarah how to ride the horse.

Holidays

We had a great time over the holidays. The girls were home for two whole weeks from school. It was so fun. Dave was able to stay home quite a bit too, so we had lots of great family time! The week before Christmas was filled with lots of fun stuff at school. Mikaela's class made gingerbread houses, the elementary school put on a Christmas concert during chapel one day, and they both had fun parties on the last day before vacation.



Unfortunately I don't have any good pictures of Alethea during the concert. I also realized I hardly took any the whole month, but here are a few cute ones that I do have.

Alethea lost another tooth. This time it was on the bottom and it was at school!

This is one of Caleb's favorite Christmas gifts. A head lamp from the Mays'. He wears this all the time!

This is just a cute one. It's so great that Alethea can read. They all just snuggled up to her to read a book. I love it!

So now we're just back into the swing of things. The girls went back to school last week. They did much better adjusting than I thought they would. Sarah continues to be doing really well. We are continuing to reduce her steroid dose, which is so great. I feel like I'm seeing much more of her personality. She is such a two year old. Her speech really seems to be coming along. She is putting many more words together. With all the new words she is trying she refuses to say yes.

Update

Thank you all for praying. Sarah did as well as could be expected. She didn't pull out her needle, praise God, but she didn't fall asleep either. She is such a trooper. Who would like to be hooked up to a poll with tubing all day? Not me! My parents went with us. It's always nice to have extra hands and distractions.

If you think of it....

...would you please pray for Sarah and I today. I am taking her for her monthly IVIG treatment at Hopkins. A specific prayer request would be that she not pull out her needle from her port, which she did twice last time. She is definitely an "opinionated" little girl, and she always makes herself known, which is why we have always called her trouble trouble!

I would also love it if she would be able to sleep for a bit. This always helps the time go by faster and helps with her restlessness. We are praying that we would see the same improvement in her coordination as last time, which would give us an indication as to which drug is helping her the most. Once again, this is an opportunity to put our trust in the Lord and not in medicine, but we are grateful that God has provided these drugs to help our girlie!

Disney World

We just got back from a wonderful week at Disney World. We had such a wonderful time being together with my parents and my sister. My parents were so generous and we got to do so much. We went to Disney's Hollywood Studios, Sea World twice, and Magic Kingdom twice. We had so much fun riding rides, meeting characters, seeing shows, and just being together. The kids did great! Rather than spread the posts out I'm just going to post the whole week all at once. We know how good I am at keeping up with posting.

The whole fam...

One highlight was getting to see my freshman year college roomate and meeting her husband and daughter....

Alethea meeting Mickey and Minnie....

Alethea, Mikaela, and I got to feed dolphins at Sea World.....


Caleb after a day at Sea World.....yes, he is laying in the parking lot using his new sword as a pillow.....

lots and lots of rides......




meeting Belle....

meeting Cinderella.....


Buzz Lightyear.....

Lightening and Mater....

Jo Jo and Goliath.....


Mom and Dad, thank you so much for your generosity. We all had a great time, and I know these will be memories that the kids have forever. We love you!!!