Thursday, August 28, 2008

MRI Update

We arrived home at 5:00 tonight. Everything went very well today - praise God. The day started with everyone eating before Annabelle got up. That worked great because she woke up excited Grandma was coming, and she got to drink as much clear juice as she wanted until 9:15 am. We arrived at 10:00 and didn't actually start until 1:00. That is how it usually goes. Anyway, she didn't say she was hungry or even mention food once the whole day. She always has a bit of a hard time waking up after anesthesia, but it was manageable. We had to wait an extra hour to make sure she was okay after being ventilated (see that she could drink alright). She walked out of the hospital and down a long sidewalk smiling! We were pleased. She came home and played a bit, ate a big dinner, and went to bed early.

We won't know the results of the test for a day or two or three. So, I'll keep you posted. As always thanks for your prayers. We appreciate our friends and family.

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the end of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." Isaiah 40:28-31

Wednesday, August 27, 2008

MRI on Thursday

Annabelle has an MRI tomorrow of her neck, chest, and abdomen. This will be a three hour procedure to look for a cancerous tumor called a neuroblastoma. Neuroblastomas are cancerous tumors located on the nerve endings branching off of the spine. Doctors believe that Opsoclonus-Myoclonus Syndrome is a result of the body fighting one of these tumors. The tumors mimic the brain cell which causes the immune system to attack both. Fifty percent of the time you see a tumor and the other fifty percent you don't because the body is good at fighting them off. We never saw one, but they will continue to check every six months for the next year to make sure one hasn't shown up since she has been immune suppressed. I hope that makes sense.

I do not know what drugs they will use for the general anesthesia yet. OMS causes changes to the brain's chemistry and causes her to have paradoxical reactions to narcotics and sedatives We found this out AFTER she maxed out her doses twice and woke up during both an MRI and CT scan in January. She then cried and flailed around for the next hour. The best drug for her can't be used longer than two hours. So, I am a bit nervous about that.

Please pray:
- for our hearts to fully trust the Lord to watch over her
- for Annabelle as she can't eat from midnight tonight until tomorrow after she is awake and doing well
- for the anesthesia to work well and keep her asleep without any reactions
- for protection from illness while at the hospital

We will arrive at 10:00 am. The MRI is from 12:00-3:00 pm.

Tuesday, August 26, 2008

The Simons School for Girls is now in session.

Take one - Annabelle look at mommy.

Take two - Good Annabelle! Now smile too.

Take three - Good smile, but put your hands down. Alexandra keep it together.

Okay, it is decent - except for the flash and bit of blurriness. Ugh! I'm giving up.

Can you say "Clowns"?

Friday, August 15, 2008

Blooming and Growing In Our Garden

We have all enjoyed watching the plants and vegetables bloom and grow this year. This was our first attempt at some vegetables mixed into our flowerbeds. They are doing pretty well.
The girls are enjoying picking tomatoes, cucumber, zucchini, herbs, peppers, and squash. It has been fun. I know that sounds weird to some, but we have really enjoyed it.

Tuesday, August 5, 2008

IVIG Infusion Tomorrow

Update: We are grateful that infusion went smoothly. She was very pale afterward, but she seems fine today. Please pray for the headaches she gets around 2-3 days later. Thank you.
Also, she is scheduled for the MRI with general anesthesia on Aug. 28. I will give more detail on that as it gets closer.

Tomorrow we will be at Children's hospital for the 7-8 hour infusion. Please pray for continued health and protection. Annabelle has been doing very well and "seems" completely happy and healthy. Obviously, we can't see her insides, and we hope they are healing too. Our main goal for the rest of the year long protocol is to try to keep her from getting sick. That sounds daunting, but we know that we have a big God and nothing will happen without Him allowing it. So, we are keeping on in the Lord's strength. Thank you to all who continue to pray. We will never know who all the Lord has burdened to pray, but we do know many. So, thank you!!!

One more prayer request: We are trying to schedule a follow-up MRI to make sure no cancerous tumors have grown since her immune system has been suppressed. There are some issues with the sedation she has had. Please pray that the details will work out and we will be able to have this done soon.