Update

Thank you all for praying. Sarah did as well as could be expected. She didn't pull out her needle, praise God, but she didn't fall asleep either. She is such a trooper. Who would like to be hooked up to a poll with tubing all day? Not me! My parents went with us. It's always nice to have extra hands and distractions.

If you think of it....

...would you please pray for Sarah and I today. I am taking her for her monthly IVIG treatment at Hopkins. A specific prayer request would be that she not pull out her needle from her port, which she did twice last time. She is definitely an "opinionated" little girl, and she always makes herself known, which is why we have always called her trouble trouble!

I would also love it if she would be able to sleep for a bit. This always helps the time go by faster and helps with her restlessness. We are praying that we would see the same improvement in her coordination as last time, which would give us an indication as to which drug is helping her the most. Once again, this is an opportunity to put our trust in the Lord and not in medicine, but we are grateful that God has provided these drugs to help our girlie!

Disney World

We just got back from a wonderful week at Disney World. We had such a wonderful time being together with my parents and my sister. My parents were so generous and we got to do so much. We went to Disney's Hollywood Studios, Sea World twice, and Magic Kingdom twice. We had so much fun riding rides, meeting characters, seeing shows, and just being together. The kids did great! Rather than spread the posts out I'm just going to post the whole week all at once. We know how good I am at keeping up with posting.

The whole fam...

One highlight was getting to see my freshman year college roomate and meeting her husband and daughter....

Alethea meeting Mickey and Minnie....

Alethea, Mikaela, and I got to feed dolphins at Sea World.....


Caleb after a day at Sea World.....yes, he is laying in the parking lot using his new sword as a pillow.....

lots and lots of rides......




meeting Belle....

meeting Cinderella.....


Buzz Lightyear.....

Lightening and Mater....

Jo Jo and Goliath.....


Mom and Dad, thank you so much for your generosity. We all had a great time, and I know these will be memories that the kids have forever. We love you!!!

Poor Girlie

Sarah is such a trooper. I know I've said it before, but she really amazes me. The last four weeks have been wonderful. Ever since her last IVIG treatment, she had been walking so great. Probably the best she had been since this whole thing started. Over the last few days we started to see a decline, and yesterday was particularly rough. She was falling so much. She had a few spills that I knew were going to leave a mark. This is the end result. Even with the shiner she is stilling willing to give us her happy face. Oh how I love her!!!

Much to be Grateful for

I am so grateful for Covenant Life School. The girls have such wonderful opportunities. The week before Thanksgiving was full of lots of great stuff at school. The week started with Alethea going on a field trip to Rose Hill Manor. The class got to learn about what life was like in colonial days. There were many neat things to see. A working kitchen, with no stove, only a fireplace, colonial games, homes, transportation, and much more. I love this first picture. Alethea's teacher is sitting down to a tea party with some of the girls.


The next day there was a Thanksgiving feast at school. The teachers planned such a wonderful day for the kids. A huge feast for lunch, Alethea's class put on a play, Mikaela's class performed Five Little Pumpkins, they got to play Indian games, and do lots of arts and crafts.



The following day, was a highlight for me. I had the honor of being with good friends as they had their 6th baby. I was so blessed to be able to be there with them. I've never been on the other side of labor and delivery. Wow! God is so amazing!
Meet Piper Hope Lowe
 

Another thing I'm grateful for is siblings who love to be silly together!

Happenings

I'm going to stop apologizing for not blogging. It's just one of those things that gets pushed to the bottom of the list. Life seems to be flying by. We are in the groove of school, and may therapists coming in and out of the house. I think we've realized our new normal. I've missed a lot over the last few months, field trips, Disney on Ice, field day at school, picking pumpkins, and never finished vacation, but I think I'll just try to keep up from here on out. The best news we've had recently is that Sarah's latest MRI came back clear. Still no cancer! We are so grateful. I'll just leave you with a few pictures of some happenings lately.

Harvest Party- 50's girl, and Lucy from Narnia

doggy and Grandma
my cute, I mean scary, dragon

our latest family picture from the Gymnasts Tour of Champions show

Greene Turtle Fundraiser

Dear friends,

As many of you are aware, the Lowe family has been going through quite a trial over the last few years, and more specifically the last few months. Matt had recent surgery to remove a brain tumor, but is still dealing with the effects. With medical costs adding up, we are seeking to do all we can to help them out with medical bills. Matt and Helen have 5 wonderful children, and are expecting their 6th child in late November.

This coming Monday, October 27th, friends of the Lowes will be hosting a fundraiser in their honor at the Greene Turtle Restaurant in Columbia, MD. The Greene Turtle will be giving 10% of the all the proceeds for the entire day back to Matt and Helen. So simply coming in and having lunch or dinner will help in the fundraiser. In addition, we will be having a raffle throughout the day to raise more money for them. The gifts range from restaurant gift cards, a framed redskins jersey, golf packages, Wii bundle package and photography packages. If this sounds familiar, it is because this is exactly what my brother and his wife did for Jen and I!

The location of the Columbia Greene Turtle is 8872 McGaw Road, Columbia, MD 21045. The Greene Turtle has a large restaurant area that is family friendly, so feel free to bring the family. Matt and Helen will be there for most of the day, as will Jen and I, and I know they would love to see you all there!

Another ER trip

This time it was not Sarah....Caleb was playing in the playhouse in the basement and fell and hit his head on the wall. It was obvious pretty quickly that we needed to go to the ER. So, off I went to the peds ER at Montgomery General. Once again they were great. I think I was only gone at most an hour and a half total. Amazing!! Caleb blew me away. He was sooo brave. I was so proud of my big boy. He only cried during the three staples and just buried his head in his blue sheet. He cried for a bit after, and then was charming everyone in the place!

Better late than never

Well, with all that's been going on around here I am VERY far behind on the blogging. I was midway through vacation when things got crazy with Sarah. I'm going to make an attempt to get caught up with that, and then all the other happenings around here. 
Day 3 of our vacation was wonderful. It started with a boat ride from a man in the community that took us fishing and sightseeing on his private boat. Almost all of us had a great time. I'm sure you can tell who wasn't so sure about this whole experience!


Caleb's fish

Alethea's fish...we finally got her to stand up and try a little fishing

sweet girlie

the whole crew


everyone got a chance to drive the boat

all tired out

Our day ended with a wonderful cookout with all the other Believe in Tomorrow families that were there that week. The volunteers provided such a wonderful evening. Great food and drinks, make your own sundaes for dessert, a clown, and arts and crafts. The night ended with a photo shoot of each family on the beach. I will post a picture of that when I get them.

arts and crafts

strawberry daiquiri's!

a new friend

fun with the clown

learning from a professional

beautiful!

Sarah

Sarah has been having some difficulty lately keeping her shakiness under control. It is most likely the result of her brief battle with the flu a couple weeks ago (that landed us in the hospital). We knew that any virus is a big deal for Sarah, and brings with it the potential for the OMA symptoms to come back more acutely. Our doctor is concerned about this, and is responding by increasing her steroid dosage for 1 week with an attempt to "knock out the bad immune system "clone" that is cross-reacting with her brain" (our doctor's words...not ours!).
So, we increased her steroids and are praying that her OMA symptoms start to dissipate. Yesterday, our good friend Kenneth Maresco initiated prayer for Sarah in our weekly pastor's prayer meeting. It made me freshly grateful to God for the gift of prayer and how that helps us know his nearness, and made me grateful for friends who hold my little girl up in prayer.

Here are some more pictures of Sarah!



I love this picture for many reasons. I took it with my phone while holding Sarah. This was taken in Shady Grove Hospital just minutes before the doctor came into our hospital room to give us the worst news any parent could hear ("the MRI shows that your daughter has a tumor"). So much is captured in this picture. We had no idea of how much our life was going to change just minutes later. We were all hanging out that morning, expecting to go home and resume life, not knowing that just a couple hours later, we'd be sitting at Johns Hopkins Hospital getting briefed on Sarah's surgery and treatment plans. At the point this picture was taken, we were completely unaware that this day was going to be one of the most difficult days of our lives.


Pictures of Sarah's 2nd birthday. Her love for ice cream hasn't subsided!


Beach picture from last month!