Wednesday, September 24, 2008

Mama's turn to be sick!! - UPDATE

UPDATE: Four looong days later, she emerged from the dark room - weak, hungry, a little grumpy and yet hopeful that the stomach flu might have passed from her. Now, she hopes that the weakness will pass more quickly that the sickness did.

I have the stomach flu. Please pray it goes away soon. I feel like I've been hit by a truck. Thanks.

Friday, September 19, 2008

Alexandra is home

Alexandra is home and her fever is gone. We actually got her back yesterday because her fever was gone in the morning, and then it spiked back up to 102.7 in the afternoon. So she went back to grandma and grandpa's for one more night. We're glad that is over and hope she is all better. So far so good. Thanks for the prayers.

Tuesday, September 16, 2008

We now have electricity - but still a sick little girl!

Praise the Lord the electricity is back on. We didn't have water either because our well pump runs on electricity. So, we are extremely happy to be able to take showers and wash dishes.

Alexandra is still at grandma and grandpa's house and is still running a high temp (103.7). She has no other symptoms except for a headache with the fever. We are assuming it's a virus. Please pray she heals quickly (my mom has to work on Thursday). In the winter, she had a very similar flu virus, and it lasted five days. We are hoping this is not a repeat of that experience. So far, everyone else here is fine. Thank you for your prayers.

UPDATE: My mom took Alexandra to the doctor today. The doctor found that she has a UTI. She started some medicine and should be better soon. He still wanted her to stay away from Annabelle until her fever is gone - just to be safe. So, keep praing it drops and we can get her back soon! Thanks so much.

Monday, September 15, 2008

God is in control of fevers too.

Alexandra spiked a fever today. So Grandma came and got her to keep her away from the rest of us. The problem is... our power is out. So we had to follow them shortly in order to get baths, food, and wash some laundry.

Her fever is up to 103.5 tonight and we have been cautiously around her. We are leaving soon and hope that maybe tomorrow we can come back to a healthy little girl. Please pray that no one else gets this especially Annabelle. Thanks.

Sunday, September 7, 2008

RESULTS and Monthly IVIG Tomorrow

The MRI was clear!! And, we heard from Dr. Pranzetelli's nurse that Annabelle's spinal fluid looked good! They did say however, that the b-cells in her blood are repopulating at a faster rate than they expected. If you remember, the chemo agent she had in March killed off her b-cells and they should start to come back in her blood (NOT in her spinal fluid) slowly between six and twelve months. So, she is okay (they said not to worry), but they will watch this rate of return over the next six months. They said it may just be the way her body responds. We will continue to pray that the b-cells come back healthy. They also said that they want to slow her steroid taper a tiny bit, and that she should continue to be careful not to be around anyone who is sick. So, we will continue on the same careful course we have taken this far. Which means limiting our contact with germs. This is difficult especially heading into cold and flu season (and the long, cold, dark winter nights... trying not to dispare here:-). The summer has been nice, because we have been outside a lot bike riding, and doing other fun outdoor activies.

We know very well that we cannot stop all illness, and we haven't. But we feel responsible to try to limit the possibility. If any of our kids get sick, then the sick one has to be kept away from Annabelle and the others to prevent spreading the illness. If we think about it very much, it can seem overwhelming. But when we look back over the last six months and see God's faithfulness in the smallest details, we are confident He will continue to help us through the rest of the treatment. Dr. P again stated that the longer Annabelle goes without getting sick, the better the chance for her immune system to heal properly. Please pray for us in our goal to do our best for Annabelle, and that we will REST in God's sovereign plan - no matter what it may allow. It is easy sometimes to fall into the fallacy that her health depends solely on how well we do our part. I love the quote, "Providence is a soft pillow." I pray that we will chose to lay our heads on it each night.

Three more thoughts:

1. Peter is taking Annabelle to her infusion tomorrow. Please pray that all goes smoothly, and as always, that they are protected from germs at the hospital.

2. Annabelle has been such a little trooper through these last two weeks. She is such a sweet joy in our lives, and we are so grateful for her!

3. Thank you all for your prayers and interest in our family. It is humbling to know that so many care and continue to pray.

Friday, September 5, 2008

Home Again

We made it home last night by 8:00 pm. It was a pretty smooth trip. We do not have results of the spinal tap yet. Hopefully, we'll get them today. While driving home yesterday, our pediatrician's office called saying they had been called by Dr. P's office in IL saying that Annabelle's glucose was slightly elevated and needed to be retested this morning. Thankfully, we got in at 9:50 so she didn't have to fast too late into the morning. The instant read blood test showed she was perfectly in range; we think the oral meds they gave her before the spinal shot her blood sugar up a bit.Dr. P and his staff seemed very pleased with how Annabelle is doing. When get the results of the spinal we will also get our "directions" for the rest of the treatment. So, I'll fill you in on that when we know.

Here is a photo journal of our trip - starting with handing off Mary and Alexandra to grandma. She got Annabelle a frog holding a blanket that had to go everywhere with us.

A little leg stretching stop along the way.

I had what I thought was a good idea... a protein bar before bed since she couldn't eat the next day. She enjoyed it and was bouncing up and down in her pack-and-play for the next hour and a half.

Dr. Pranzetelli and staff.

Before surgery.

Snoozing after. She had a very hard time waking up. She was all out of sorts and tossed around, and we couldn't get her to calm down. She cried all the way to the car in my arms. Then, she wouldn't go in her car seat. This was very uncharacteristic of her. I held her in the back seat. Peter prayed, and she immediately calmed and stopped crying. It was amazing.

We stayed at the Ronald McDonald house. It was a nice home away from home.

The next day, we went to see where Abraham Lincoln lived for 17 years before going to Washington. It was very interesting. Here are some of his original furnishings including his desk, dresser, horse hair couch, and kitchen stove.

Finally, on our way home we drove under the most beautiful rainbow. This picture doesn't do it justice. We saw the whole entire rainbow. It was such a beautiful reminder that God is faithful.

Tuesday, September 2, 2008

Heading to Springfield, IL

We are headed to Springfield to see the specialist that diagnosed Annabelle with OMS. He will do another spinal tap, under general anesthesia :(, to see what her B-cells are doing. There shouldn't be any b-cells in the spinal fluid and that is what we are hoping to find. The test is tomorrow morning at 11:00 am. No food again until she is awake and doing well.

Mary and Alexandra are going to Grandma and Grandpa's house. The are very excited to go to the dollar store and eat more sweets than they normally do. Olivia is going along with us to keep Annabelle company, and hopefully get to see Abraham Lincoln's house.

Please pray for safety, health, good test results, and opportunities to share how God has helped us through this journey so far.

Thanks and we will up date when we can.