When it rains, it pours - literally!

Our June and July were largely consumed with urgent projects. Our basement flooded because our window wells, that we had made larger when we replaced the windows but never finished with a retaining wall, filled up during a flash flood. Peter spent much time and hard work to remedy the problem (each stone weighed 30 lbs). On top of that, our refrigerator died on Father's day (see the sweet picture). We quickly bought a used one off Craig's list to put in the garage, and it died 10 days later before our kitchen fridge was fixed. Our disposal also went out... and now our lawn tractor. So when I say "it pours" I am not kidding. Peter thinks he is turning into a full-time home maintenance man. We did have some help along the way which was a blessing. I keep thinking of the quote, "God is more interested in our character than our comfort." So with that in mind, we press on.

Monthly Infusion Tomorrow (7 more to go)

UPDATE: Okay, we didn't avoid the headache altogether. She got one 3 days after. Thankfully, today she seems to be over it completely. Over-the-counter meds greatly helped.
UPDATE: Everything went smoothly yesterday and this morning at our Doctor's apt. Dr. Lo is very pleased with her status. Praise the Lord!So far, no headache from the infusion. YAY! Thanks for your prayers.


The month has flown by, and it is time again for Annabelle's monthly IVIG infusion. She has remained healthy and symptom free this month. We scheduled her six month follow-up with Dr. Pranzetelli in IL for early September. He will be checking her spinal fluid for B and T cell counts. So far, her blood work is exactly where it should be, and they are pleased. We also have a follow-up appointment with Dr. Lo (our neurologist here) on Friday morning.

Please pray for:
- continued health and protection from germs.
- the infusion to go smoothly.
- no side effects during and after the infusion.
- that God would be glorified throughout this treatment.

4th of July at Buckeye Lake

The fireworks were so pretty over the water. We had a good time getting away for a night and enjoyed the change of scenery.

VBS at home!

Thanks to all who helped us have a fun time doing VBS at home. We had all the crafts, lessons, music, and even some video (thanks Mrs. Harless). God is so good! Here are some pictures of Olivia teaching from her class notes. She did a good job trying to make it exciting; you can see how attentive her students are;)

You Can Pray For Us This Week!!!!!!

Monthly Infusion Tomorrow (8 more to go)

Update: Everything went smoothly today at the clinic. Now that we have been home a few hours she is fussing and grabbing at her nose. This is what she did the last time her head hurt. It seems like she feels pain just below her nose. She is consolable, but not herself. Thanks for praying; hopefully the pain will dissipate by morning.


Tomorrow we head to Children's Hospital for our day long infusion. We also have our last large blood draw we have been doing for Dr. Pranzetelli's research. This is the type of draw we often run into problems with her blood clotting too quickly. We have to draw the blood before starting the infusion so the IVIG doesn't skew the results.

Please pray that:
- The blood draw will go smoothly.
- Annabelle won't have any negative reactions to the infusion (during or after).
- We are protected from illnesses we could pick up at the hospital.
- I will be patient with whatever challenges come.

Thank you to all who pray so faithfully for us. We truly rest in the fact that we know prayers go up for Annabelle regularly. Thank you for that ministry.

A little surprise!

Thanks a lot Denise - look at my child crying because she couldn't have her candy NOW!!!











They all say thank you. They can't wait to tear into it. (Yes they have to wait until after lunch!)

My Little Vase of Clover

I was getting ready to empty this vase of dying clover one of my girls happily picked for me when I remembered how I had been a little hassled at the prospect of being given a handful of weeds to preserve in some water in my house. However, today as I thought about my little vase of clover, it hit me that one day I won't HAVE to preserve any clover so that feelings won't get hurt. One day there won't be anyone happily picking clover for me. This little vase of clover suddenly represented much more than weeds to me. It represented the child's heart full of wonder, excitement, and love. The little hands that picked the clover and the sparkling eyes and smile that came with the delivery are what I'll remember. Oh, thank you Lord for the precious vases of clover. Help me to receive them with a joyful heart full of wonder.

A Friday Funny For You

Here is a funny and creative pair of web commedians /entertainers. I always wondered what they were talking about on this song. Well, I still haven't figured out much of the facebook lingo yet, but I have learned what a "mini feed" is. So, I hope you all enjoy this cute song.

http://www.youtube.com/watch?v=rSnXE2791yg

Sweet 6!

Here are a couple of pictures from Sunday when grandma and grandpa came to celebrate. I'll have more from today later.

















This is one is for the Shooks - Thanks Uncle Dan, Aunt Steph,
Emily, and Katie - I loved my gifts.

More fevers

Update: Fevers are gone. They were short with no other symptoms - Praise the Lord. Annabelle hasn't gotten one yet - PTL! Thanks for your prayers. I have never seen such short lived fevers before. The last two Alexandra had only lasted a day and were gone. Prayer is the only explanation I have.


Just a quick note: Alexandra has another fever and went to grandma and grandpa's house. I also have a slight fever as well. Please pray that these pass quickly, and that Annabelle will be protected. Alexandra and Annabelle played together this morning. So, I'll be watching her as well.

Some Fun Times

The girls love being outside!!!

A headache on this beautiful Sunday

Second Update: This morning the fever is gone!! We are relieved. If it is viral, it may return this afternoon/evening. But, maybe it is gone for good.

Update: Now she has a fever of 99.8. Please pray it doesn't go above 100.4. She is fussy, and we are hoping it is nothing serious like an infection of her port that was accessed on Thursday.


Annabelle has a post infusion headache today. I thought we were clear of it, but it came on this morning. Please pray that it will respond to Tylenol. The first dose helped a little, but she has been fussy and not herself all day. She doesn't have a fever, but she randomly grabs her head and cries. We are a bit surprised. Normally, when she is pretreated with meds, she doesn't have any reactions later. I guess reactions happen on a case-by-case basis. Thanks for your prayers.

Monthly Infusion Tomorrow

Update: The infusion went very smoothly. Yay!! It was the best one yet (no known exposures to anything, no ripping out the IV line, no negative reactions, started by 9:00, home by 4:45pm). We are thankful for the helpful nurses there; they really try to help in anyway possible. Thanks for your prayers.

Tomorrow is our IVIG infusion, and we are hopeful that the day will go smoothly. We were able to work out some of the details of Dr. Pranzetelli's protocol that have been a struggle with our Neurologist and the clinic here.

Praises:
- Annabelle didn't get chicken pox from the last infusion.
- She has been completely healthy despite some colds and a small fever in the house.
- Her well-check up showed her height and weight were completely on target for her age at the 45 and 5o percentiles. There doesn't seem to be any growth suppression or weight gain from the steroids she is on. Praise the Lord.
- Developmentally she she is also doing very well. We praise God for his protection over her little body.

Please pray for:
- safety from germs.
- Annabelle to tolerate the infusion and the medications they give her to help her body accept the blood product without a reaction.

Thank you for your prayers and interest. I'll update you on how it goes.

Romans 8: 35
"Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution
or famine, or nakedness, or peril or sword"

Teacher Appreciation Week

Today, the women's ministry at my church delivered adorable cookie bouquets to teachers for Teacher Appreciation Week. They even delivered them to homeschool teachers! My bouquet had a tag that read:

"Thank you for following God's leading, and for all you put into your children each day!
"Let us not become weary in doing good..." Gal. 6:9

One of my loving students piped up and said, "Why are they giving you one? You're not a teacher." After I rearranged her teeth and she cried a bit ;), I gently explained that I AM a teacher even though my degree isn't in elementary ed. You see, I can even think sometimes that because I don't hold a degree in education that I am not a teacher. But when I became a mother, I became a teacher. And when my children were old enough, we added academics. Do I have great methods or delivery? Do they always get what I'm saying? Do they perfectly obey or get along? No, No and No. As I thought about being a "teacher" today, it humbled me to think that God has given me this responsibility and privilege. I don't feel very qualified or deserving, but I love to make an effort, pray for the outcome, and watch the Lord bless.

Thanks to the Maranatha Women's Ministry for the cookies and the reminder of Gal. 6:9! My "students" and I enjoyed the treat.

Fever In the House

Update - Wednsday, 2:30pm:
Alexandra came home last night. Thankfully, her fever was very mild and short lived. The rest of us seem to have minor cold symptoms - except for Annabelle!!! She is well. Amazing huh! Thanks for the prayers. God is so good.

Update - Monday, 2:00pm:
My mom came and took Alexandra to the doctor's for a strep test (Thanks Mom!). It was negative. She probably just has a virus. So, she will stay away until the fever is gone. Thank you for your prayers - we appreciate each one of them.

Sunday night:
Tonight Alexandra has come down with a fever 100.6. This amazes me - first because she has been out VERY little, and we are so careful about germ control at home. And second, of all people to get sick, I would think it would be Annabelle first with her low immune system. The bottom line is God in is in control, and we trust his plan. Alexandra is home tonight, and we will evaluate her in the morning and possibly take her to the doctor.

Please pray for:
- wisdom with what to do (quarantine her or send her to Gma and Gpa's).
- protection for Annabelle and the rest of us.
- healing for Alexandra.

Praise God:
- so far no Chicken Pox.
- Annabelle is doing so well (no real visible symptoms).

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!!

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.

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.

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.