Great News!

I called Sloan today and finally just asked the surgeon's office for the direct number to the pathology department. We absolutely need to know the results of the pathology studies done on Brady's tumor. They were going to call me back with the number, but instead...they called back with the results! Brady's tumor was tested and came back NMYC non-amplified which means he is still in the intermediate risk category. It's all very complicated, but the bottom line is this is GREAT NEWS! Had it come back NMYC amplified, we would have a much higher risk of recurrence and a lower survival rate. We are praising God for another piece of wonderful news!!!

Today's update:
No word from Sloan. I definitely need to call them tomorrow, just didn't have a chance today.

The eye doctor's office didn't have power this morning, but we were already on the road when I got the call. Cara and I spent some time at fellow-triplet-mom Jill's house which is only a mile away. When power came back on we headed over there only to find they were closed until 12:30. We went and got lunch and then waited until 12:30 to see if they could get us in (our appt was at 10:55). We did get in, but didn't get any answers yet again. During our conversation with the doctor, it became clear that he had somehow recorded that during her last visit her head tilted to the right when looking far away. This just has NEVER been the case, but I couldn't convince him otherwise. I have brought picture to our Oct, March, and June visits all showing the head tilt to the left. Despite this, he is calling it a "variable head tilt" meaning that it changes. I was very frustrated because this is not what we have seen for the past two years. Her left eye also tested significantly weaker than her right eye which supports my hunch that something is wrong with that left eye, thus the reason she tilts her head to the left so she is only using the right eye when looking in the distance. I'm starting to think that I need to bring an advocate to every doctor's appointment! This doctor wants us to come back in 4 weeks and check it again. After talking about it, Matt and I decided to get a second opinion from an eye specialist at Strong. God gave my little girl those two beautiful brown eyes and I want to make sure that they are the best they can be!

Sickness report: Brady threw up two times this morning right after breakfast. A few yucky diapers today too between he, Eli, and Allie. Aren't you glad I share all of this with you?

Until tomorrow...

Sunny Sunday

Is it too optimistic of me to think we might be out of the woods with this stomach bug? We had one throw up today(Brady right after breakfast again) and no yucky diapers. Everyone ate, played, and slept as usual. We'll see...

It was a fun day of letting the kids play with the garage sale finds I picked up on Saturday morning. The kids just love their "new" tool bench and puzzles. I also picked up footie pjs for Cara for this winter for $1 a piece and a Lands End winter coat for $8! I love bargains:)

Matt and I are really trying to reorganize our home. If you have never been to our house it resembles a very large toy box...think toys and books strewn throughout. Although we pick it up every night, within 30 minutes of morning play we are right back at "toy box" status. We don't buy them a lot at all, but every little treat from grandparents is times three, every gift for birthdays and Christmas is three...that adds up to a lot of stuff. Now you add in the baby and her things, and you have one cluttered place! I got a neat new book rack and a storage unit from Target and we are hoping to get things organized tonight! It's funny how as they grow you need to find room for new things like crayons, markers, and playdoh.

Tomorrow I'm taking Cara for her 3rd appointment with the eye specialist. Just to remind you, she has been tilting her head to the left for over a year now. She does this only when looking at things in the distance, like the tv. She had an appt in October and another in March. The doctor thinks it is 4th nerve palsy, but wanted to keep monitoring to see if it resolved itself. It almost seems as though she may be doing it a little less, but I think we are just getting used to it. I tried to really pay attention to it this weekend, and she did it almost everytime she looked in the distance. Surgery is required to correct it, so we will see if the doctor wants to keep waiting or go ahead with the surgery. Or appointment is at 10:55, then we will go out to lunch together:)

I am expecting to hear from Sloan tomorrow regarding the NMYC results. I was talking the mom of our friend Nathaniel who had a similar surgery at Sloan the week after Brady. They somehow messed up his results as well, and they are trying to sort it out.

Here are some pictures from our day today (These are for you Grandma Tony!)

Loved this view from our patio today...sunny and 75*

We brought our snack onto the patio today! Cara was being a stinker!

The kids are loving our water table this year. What a difference a year makes...last year Brady wasn't walking and really struggled to do these types of things. Not this year! Go Brady!

"Airplane up high Mommy!" said Eli

Dream baby was there too!

Finally Friday

Another week down! I was really hoping to hear from Sloan today regarding the last test result (NMYC). It has been 2 1/2 months since the surgery and this test is supposed to take 2 weeks! Obviously there has been a mix up and they are very apologetic. I called today, but they still don't have the result. They are hoping to have it Monday. Exactly where is this lab, where is this tissue sample, who are these people working on it? Makes me scratch my head...



Today started off with a bang! When I came down the stairs Matt was plopping the kids in their highchairs and leaving for work. When I looked at Cara I knew something was wrong. For one, she looked awful, and she couldn't wake up! She literally sat in her high chair asleep! She has had diarrhea for two days, but other than that was fine. This morning her diaper was dry and she was very listless. I woke her up a little and managed to get a few sips of Pedialyte in her, then put her back to bed. About 5 minutes later she threw up. Ughh....I put a call into the pediatrician and they told me to just keep waking her every 30 minutes and having her sip the Pedialyte. By later morning she made it off the couch and tried eating some lunch. She took a good nap and then by dinner time, felt fine. We'll see if this bug continues to attack the rest of us...



Have a great weekend! I'm off for a morning to myself tomorrow. Planning on hitting some garage sales and just wandering around a few stores!

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Psalm 71:14

Psalm 71:14
But as for me, I will always have hope; I will praise you more and more.

This verse really sums up what goes on in my mind lately. Some days it's like a battle between the praise and the fear! I LOVE this verse because of how it handles both of these feelings for me and reminds me that God has taken care of it all! I hope and pray every day for better days for Brady...continued progress physically, no recurrence of cancer, and as few physical effects from his spine surgery later in life as possible.

And my praises!!!
1. Brady is HERE!
2. Brady can move his limbs!
3. He is home!
4. He can walk!
5. He is done with treatment!
6. He is a bright, intelligent, boy!
7. In 5 months his little light has shown so brightly in the lives of so many!

And I have 3 other kids I could write my hope/praise list for! I am working on trying to think of life this way...instead of what I'm pessimistic and optimistic about, what am I hoping for and what can I praise God for. Neat stuff....

Brady report: Brady had a great time at PT today. We got to go to the gym at the Al Sigl center and there were many fun things for Brady to explore. He is working on endurance, walking up inclines, balance/stability, and strength. In just a few weeks the therapist thinks he has made huge strides. We already had to rewrite his goals because he met them already!

We took Allie with us to PT today because she was up most of the night very fussy. We had an appointment with the doctor on our way home. Her ears were clear, so the doctor thought it may be a new cold coming on along with teething. Yuck...

I got an email from Sloan today. They are expecting the final results from the NMYC test back on Friday or Monday. There was a mix up somehow, so they were resubmitted. The last piece of the puzzle before we can breathe a little easier for a few months. Matt and I have decided for sure to do our scans at Sloan. Now we have to decide if we will wait 6 months, or if we go with the initial recommendation of 3 months. We still aren't sure what made the doctors change their recommendation, or if it is just two different opinions. We have a little while to think about it...