Sunday, September 13, 2009

A New Baby Boy!

Hello and sorry it has been so long since I last posted. We had a great summer and enjoyed our vacations. Everyone stayed healthy except for one case of strep throat. We are very thankful for our summer.

Some big news we want to share is that we just welcomed our fifth baby home on Friday. William John Simons "Will" was born on 9/10/09 and weighed 9 lbs and was 20 in. long. Mom and baby are both doing well. Dad and sisters are thrilled and have been very helpful as mom is recovering. Here are a few pictures of our newest addition.

Monday, June 22, 2009

Praise and Prayer Request

We have been healthy and enjoying life. Annabelle is in remission, and has been off of her steroids for three months without relapsing. This is good news and hopefully means we are heading toward a permanent remission. However, she could back slide with an illness which would then go away when the illness is over. Or, she could relapse which would need further medication or treatments. OR --- our hope ---- she could breeze through without any sign of symptoms recurring. We won't know until the first illness comes.

Here is where the prayer request comes in. We just returned from vacation in UT and were around many family members. No one (of 34 people) was sick the whole week (praise God!!). However, Mary woke up this morning with a sore throat -we all are a bit sneezy and sniffly coming back to the pollen in OH. So, with no fever I didn't really get too concerned. But, tonight she started to run a low grade temp and I whisked her off to the Minute Clinic at CVS. The Lord prompts us at just the right time - we arrived 20 minutes before they closed with no wait! Anyway, she tested positive for strep throat. She has never had strep and we have been so careful to wash hands, but alas God is in control. So, I came home and put a mask on Mary and together we wiped down everything she could remember touching and spraying places she sneezed. I know God is good and will get us through each scary moment as He has so far.... it is just the unknown I don't like. If you wouldn't mind saying a little prayer of protection for the rest of us we would greatly appreciate it. We are thankful to you all.

Thursday, April 16, 2009

Annabelle is Three!!!

This is Annabelle's
"pool cake" she asked for. She has great memories of going swimming last year at a neighbor's pool. So I made a pool cake. She is sooo excited to be "bigga". She is excited about having a baby brother too. Yesterday she said, "How long until I'm grown up... I want a baby in my tummy too." She is a lot of fun and keeps us laughing.

At her infusion, she got to use her new Color Wonder stamps from Aunt Steph, Uncle Dan, Em and Kaite.

Wednesday, April 8, 2009

Happy To Be Home - IVIG Infusion Tomorrow

We are home from Springfield and are happy that we may never have to go back again. Dr. Pranzetelli and his nurse Liz were very pleased with Annabelle's physical tests. They do all kinds of skill tests looking for levels of mastery and ability. They said that the next two months are a critical time to watch for relapses. So, we are to continue being careful and then slowly ease back into normal activities while still being careful not to go around those who are sick - easier said than done.

Annabelle's spinal test came back within acceptable limits which was also good to hear. We hope that this is gone for good, but we won't know until we pass the next two months and the first fever and illness. Soooo, we will continue to pray for the grace to handle whatever God allows in her life knowing that He will never leave us nor forsake us. Thank you to all who follow her updates and pray for us. We are comforted by your prayers.

We have her monthly infusion tomorrow at the clinic. Please pray for protection and a good day as we were sitting in the car most of the day today and will be sitting most of the day tomorrow for the infusion. She is a trooper, and I am blessed to see that most days she handles these inconveniences with a pleasant spirit. I think that I am the one who is a bit worn out from the events this week. Only one more day and then a 4 week break. Yay!

Thursday, March 26, 2009

Praises to share!

We had our follow-up appointment today with the plastic surgeon and the mole was completely removed, and the pathology was good and proved it was a benign Spitz nevis.

Second, the MRI results came back clear.

Third, Annabelle is doing well since coming off her steroids. We see no changes and pray for her immune system to continue to heal completely.

We have rescheduled our trip to Springfield, IL. The spinal tap will be next Tuesday, April 7th.

Please pray:
-- For Annabelle not to be afraid. She is more aware now than last year and recognizes what is coming.
-- For the coming out of the general anesthesia. She did well with the MRI, but it was a different drug than what Dr. P uses. She didn't do well back in Sept.
-- Protection from illness while in the hospital and offices the whole day.
-- Safety traveling.

Monday, March 16, 2009

Happy Days!!

Friday's MRI and mole removal went well. We were scheduled for 1:00 but didn't actually start until 2:30. Annabelle hadn't eaten anything since the night before, and amazingly she never mentioned food or being hungry once! She did seem tired, quiet, and a bit nervous the whole morning. About every half hour she'd say, "Mommy, you go with me?" It was so sweet and sad because I had to tell her that I could only go so far with her and then she had to go with the doctor. When the time came, the surgeon carried her bouncing and trying to keep her from totally losing it. She did pretty well at keeping under control. She is such a trooper. Her scar on her cheek looks pretty good. I think it will heal pretty well and not be too traumatic for her down the road.

Now, we will wait for results of the MRI and mole biopsy. Hopefully, they got it all and we won't have to repeat the process!!

On another note - we finished her shots this week and said goodbye to the blood pressure machine, calcium, and Zantac that she had to take because of the steroids!!!! We are greatly relieved to be off of the ACTH and are greatful for the prayers and protection we have recieved while on it. She did not suffer the negative side effects that were possible. We know that prayer made a difference. THANK YOU!

I'll update the blog with the results of her test when I get them both.

Monday, March 2, 2009

March Madness

Well, it has been a month since my last post. No news is good news. Annabelle continues to stay well and taper off her meds. This month marks a big milestone in her treatment. We stop her ACTH shots on March 10th!!! This is a huge blessing. We are very excited to be done with steroids for awhile - maybe forever! I wanted to give a list of events this month as it is a busy one. Here are somethings that we would appreciate prayer for:

March 3 - Monthly infusion at Children's Hospital
March 10 - Last shot!!
March 13 - MRI and mole removal on her cheek. This is always hard to have her put to sleep.
March 30 - Travel to Springfield, IL to see the specialist who diagnosed her. She will have a spinal tap to check her b-cell counts (asleep again). Hopefully they are still great.

We appreciate and covet your prayers. Thank you.

"Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?" Romans 8:32, 35

Thursday, January 29, 2009

Infusion and other happenings...

We have our monthly infusion today along with an appointment with a plastic surgeon who is advising us on a mole that needs to come off Annabelle's cheek. Please pray for wisdom, safety and all to go smoothly. I'll update more on this later. Gotta run. Thanks!!

The day went smoothly. The plastic surgeon said he was willing to try to work out scheduling the mole removal with her next MRI. Now, it is just making all the details come together. They would have to transport Annabelle from the operating room to the MRI area while under general anesthesia. SO, they are checking into the details of doing that and if it is allowed. It makes me a little nervous. Please pray that if this is supposed to work out that it will. And, if not, that two separate general anesthesia experiences wouldn't be too much on her. Thanks.

Some are probably wondering, "What is this mole that has to be removed?" Well, she has a Spitz mole on her cheek that they believe is a benign melanoma. I didn't know any melanoma could be benign, but this kind is. Even though it is benign, they like them removed so that they don't ever turn into something bad. I hate that it is on her face, but at least someday make-up can help hide a scar:) I'll update more when when we have a date scheduled and I have more details. Thanks for those who continue to check and pray!

Friday, January 16, 2009

Four birthdays in two weeks!!

December was a very busy month for our family. We had four birthdays between December 22nd and Jan. 2nd not to mention two holidays. Here are a few pictures of the birthdays.

Olivia turned 11 and had a birthday pie- yum!
Alexandra had a pony cake, I had breakfast in bed, and Peter had a bunch of girls giving him cards and gifts.