Friday, April 25, 2008

Stars on.... Pavement?

Olivia bought some roller blades which made everyone else interested in skating too. It is always fun to do what big sisters do:) Sometimes though, it is a little scary for the mom to watch!!

Wednesday, April 16, 2008

IVIG Update

Well, the day was a long (about 10 hrs) and proved trying. I keep thinking I have learned the meaning of trust, and the Lord keeps showing me there is much room to grow. We arrived at 8:00 and didn't start until almost 10:00. So in between that time was a lot of stress. I won't go into all the details, but I will share one. We forgot the lab slip from Dr. Pranzatelli at home. The blood had to be drawn before the IVIG was started, and it was going to be a seven hour infusion. If we didn't get started right away, we were going to have to be admitted to the hospital. So, since we had the special tubes for the blood draw just no orders stating what to do with the blood, the nurse went ahead and drew the blood so we could start the IVIG. She remarked, "this is a lot of blood to draw." I told her that Annabelle's blood clots FAST, and that we have had to do it twice in the past because it clotted before it could be put into the vials. She drew two large syringes and then a smaller one. As soon as she was done, I watched her put them in the special vials. The two large ones were fine, and the last little one clotted that quickly. The two large ones are what we needed to have for the research Dr. P is doing. It is a praise that the port worked, and we got all the important blood we needed. (Later the line pulled out of her port - not my fault this time - and and we were able to redraw the little vial then.)

A few more answers to prayer:
- We followed Dr. P's protocol (with a little urging).
- Her port worked well.
- We got the same room we were in last time.
- Annabelle got a little nap (in my arms - there isn't a bed).
- To date our insurance has payed for all of our treatments.

A prayer concern:
- A girl came to the clinic today (and we walked right by her) that had spots all over her that looked like chicken pox. They stuck her in a room right away, and called a doctor to come check her. This is very bad because everyone in the clinic is immune suppressed to some extent. The doctor said he didn't think she had chicken pox but probably something post viral. I am not a doctor, but when I saw her my mind screamed "chicken pox." The girl's mom thought it was chicken pox because she had been exposed at school. Either way, it scared me. I know God has every detail of our lives in His sovereign control, and I am trying to trust in Him. Please pray that God would continue to strengthen our faith.

Monday, April 14, 2008

Annabelle update

Hello and sorry it has been so long since I have updated you all. Annabelle had a doctor's appointment last Friday with her pediatric neurologist Dr. Lo. He is following Dr. Pranzetelli's protocol for treating OMS. Dr. Pranzetelli is a neurologist and the leading (there aren't many) researcher in the field of Opsoclonus-Myoclonus Syndrome and is located in Springfield, IL. Dr. P is the one who diagnosed Annabelle in early February. Anyway, Dr. Lo had not seen Annabelle since before she started treatment. He was very pleased to see her progress and admitted that he was uncertain about putting her through this treatment because his one other patient that he sent to Dr. P didn't show much improvement. Then he said, "She is lucky. Let's keep our fingers crossed." But we know that most doctors don't have much experience with OMS and each case is different depending on how severe it is and how soon and what type of treatment was prescribed. We are hopeful and trust God for whatever he has for us. We are just trying to enjoy each day and take none for granted. That being said, Annabelle had a great week last week with a slight improvement in the last 5 % of symptoms. It is very hard to "measure" improvement, but we think we see a bit of improvement. Please keep praying (not crossing fingers)! There is no luck - only providence.

As for the rest of us -

Peter is doing well at the helm. He helps keep the boat afloat with God's help and throws me a life preserver when needed. I've had a couple of those "I'm sinking" moments over the last couple of weeks. I found a Yahoo group for parents who have children with OMS. I was excited to read all the information I could and ask questions of families who have gone or are going through the trial of OMS. That took a toll on me spiritually and emotionally, as I felt like I entered into each families' traumatic situation and sympathized with them. I also found myself starting to WORRY that all that I was reading about might happen to Annabelle. Spending a lot of time on the Yahoo group also ate into my time for other things like posting on my blog! So, at the urging of the captain, I stepped back from reading and interacting as much as I was, and am doing better.

The other three girls are doing well handling the isolation. Olivia and I ran out to a store for an errand for the first time since before we started treatment (Feb. 11). She was thrilled to get out a bit. Now that we are through flu season, we will try getting out a little bit here and there with caution. We are ever reminded that any illness is a potential setback in her progress. Also, Annabelle was not vaccinated for chicken pox. This kind of illness is potentially deadly to her in her current immune-suppressed state. Please continue to pray for protection from illness - for all of us.

Annabelle has another IVIG infusion this Wednesday. Last month was the first time we were in the infusion clinic for the infusion. It went much faster than when we were in the hospital. This is because the Dr. Lo didn't think it was necessary to follow Dr. P's protocol for administering the IVIG. So, I sent an email to Dr. P asking if it is alright to go by the pharmacy's book for infusing IVIG, or do we need to do it his way. He didn't give much room to change it. So, we are caught in a little struggle between doctors. Please pray that what we suggested to Dr. Lo last week will happen on Wednesday. This infusion will be approx. 7 hours. I covet your prayers during this time. There are so many little things that can give us trouble - like problems with her port clogging up with blood during the blood draw before the infusion, or her IV line getting caught on the chair and pulling it out of her port.

Please pray:
- that Dr. Lo will follow Dr. P's protocol for giving the IVIG
- that Annabelle will not have any allergic reactions to the IVIG (antibodies from 20,000 - 60,000 different people) The last time she had a terrible headache two days later.
- for no complications with her port.
- that we might be able to get one of the two rooms.
- for protection from illness.
- that we would face each day's trials with joy. (That is hard for me!! I want to do better.)

Thanks for reading this very long post and for praying.

Wednesday, April 9, 2008

Annabelle turned two!

Annabelle celebrated her birthday a day late because mommy and Olivia were feeling under the weather. It didn't seem to matter to her one bit!! (that is one good thing about being 2) Grandma and Grandpa came to celebrate with us. It was fun to watch Annabelle run around and enjoy life. She is very precious to us.

She looovvveed her "Melmo" cake as she called it.

She also loved opening her presents.

Her dad and grandpa are putting together a tricycle that she had a lot of fun riding around the house.