Tuesday, December 30, 2008

Tomorrow (31st) is our last infusion for this year. Peter is taking her since I have a cold and cough. Please pray for the usual things... protection from germs in the hospital, her port to funtion properly, and a special time with daddy!

Thank you all for the prayers this past year. We feel very blessed and thankful for the year we have had to focus on Annabelle's health. It has made us appreciate every moment with her. We have also learned to appreciate each other and our friends and family more. You never know what a year will hold. We have learned to trust the Lord more, and I am learning to let the fears go.

Whatever our new year holds, His grace is sufficient for us. (2 Corinthians 12:9)

Much love and HAPPY NEW YEAR!

Wednesday, December 3, 2008

Monthly IVIG Infusion

We are off to our infusion today. Please pray for protection from germs and that Annabelle and I will enjoy our time "together." She did not even wimper the last time she had her port accessed. This is a huge step. She is getting used to the routine which is a blessing and makes it all easier.

Thanks you for praying and have a good day.

Thursday, November 20, 2008

Where have we been????

A few different things have kept me from posting lately. First, we have a new computer with Vista that isn't very friendly (at least I have gotten comfortable using the system yet). Hence, I have not wanted to up load my pictures. Second, we have been busy with various appointments and Peter's grandad's passing away last week. Third, we have been having a smooth time with Annabelle and no sickness in our immediate family to report. That is the best reason for not posting! Life is full and we are so blessed. Here are some pictures from different events in the past month or two.

This year we dressed the girls up and delivered cookies to Grandma and Grandpa, Aunt Step and Uncle Dan, Aunt Ali and Uncle James, and Greatgrandpa and Greatgrandma Carol . It was good to get to see them for a few minutes and say "Hi" even if it was from the door.

Blogger isn't letting me upload pictures for some reason. So, I'll keep trying.

Wednesday, November 5, 2008

Monthly Infusion

Well, I forgot to post that Annabelle was having an infusion today. It went very well. Annabelle didn't even flinch when they accessed her port. This is a huge improvement. The infusions have gotten easier it seems. We all know what to expect, and Annabelle is used to the pokes, blood pressure readings , etc. She doesn't cry for her shots at home either. It is a relief to see her handling everything so well. God has been so gracious to us. We feel very blessed to have so many people who faithfully pray for her. Thank you all.

Thursday, October 16, 2008

Enjoying the fall!

These are some photos taken at Glen Helen in Yellow Springs, Clifton Gorge, and Sharon Woods park. We had a great time.

Wednesday, October 8, 2008

The infusion went well.

Thank you for your prayers. We have much to be thankful for. God is so faithful to give us exactly what we need to grow and trust Him more. The day went smoothly overall. Annabelle only whimpered when they accessed her port and drew the blood. This is a big improvement from when we started in February. Also, the nurse measures and weighs her every month and she has grown 3.25 inches since March. This is great because they told us her growth would likely be stunted until she was off of ACTH (the shots she gets every other day that we are slowly tapering). We are so pleased.

A smaller praise that a only a caregiver can fully appreciate is that I am required to collect a 24 urine test from an active potty trained toddler who is used to taking herself. The praise is that I was able to do most of it while we were stuck there most of the day instead of trying to make sure I am with her at home every minute. Since she is not dry at night yet, we have to use an adhesive bag - very difficult. Please pray it stays on all night so we can be done in the morning.

The day was not any shorter because the volume of IVIG was the same even though the concentration was slightly less. So we were done at the usual 4:30. My mom had my girls and usually brings them home, but she came down with the stomach flu today while she had them. So I drove out to pick them up, and left Annabelle in the car away from illness. Please pray that she heals quickly and that no one else gets it.

Tuesday, October 7, 2008

Monthly Infusion

I'm wearing my mask trying to be safe coming in and out of the hospital.

Keeping busy with some fun play dough.

Snoozing on my mommy.

Annabelle has her monthly IVIG infusion tomorrow. She also has a few blood tests for her thyroid to make sure it is functioning properly. Dr. Pranzetelli said some of her lab work from our trip to IL showed some abnormal levels and we need more testing.
We are excited that she will get slightly less IVIG because the Dr. P decreased the dose due to the fact that she gets headaches afterward. So, this might mean a shorter day there.
Please pray for us tomorrow for:
- Annabelle as she is increasingly aware of what is happening and doesn't like it. She handles it pretty well, but the blood draws are a bit scary for her.
- Protection from germs.
- Strength for whatever comes our way.

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.