If You Need Me, I'll Be in the Bathroom

Seriously, if you need me...I think you will be able to find me for the next few weeks sitting on my bathroom floor, waiting for someone to use the potty. If I'm not there, I'll be scrubbing up wet spots off the hardwood floor or carpet. Perhaps you might even find me doing a load of wash! Yes, my friends, I am a potty training mom!

I'm talking like I was here all day dealing with the potty training...and I wasn't! My wonderful mother in law was on duty today as we started Eli off on the potty training adventure! Brady, Cara, and I were in Rochester at appointments, so I thought Eli might enjoy some quiet time and a more relaxed setting to get going (no pun intended).

Eli is a different sort of child than Cara. He has thoughts, many thoughts, that seem to come and go from his little head on a whim. He's up, he's down, he's running around...the phrase I hear myself saying to him over and over is "Focus buddy!" Grandma reported that after sitting on the potty early this morning waiting for the pee to come for close to 30 minutes, Eli promptly stood up from the potty and peed all over the floor. He did have several successes today, so I'm celebrating that and moving on! Cara did a great job while we were out today, but had a few accidents at home, go figure.

Before I go any further, I need to have a minute of honesty here! For the past day or two I've had a pit in my stomach and I feel that familiar enemy gnawing at me. Fear. Ever since Brady told me that his back hurt my mind has been spinning with worry. I'm not sleeping well and I'm just unsettled. He was up last night around midnight just kind of whimpering. He never is up during the night, so I was alarmed. I came down, sat on the floor beside his bed, and just held him. He was never able to tell me what was wrong, but he just wanted to be held. As I laid my hand on his back and prayed, I just asked God to spare him from pain. I asked God to continue to allow my mother's intuition to give me insight and for God to use my worry for good and for it not to overtake me. That's a tall order, but God has done this for me before and I know He can do it again. Brady seems fine other than these two little instances, but a subtle twinge of worry is all a cancer-mom needs to be on red alert!

After Brady's PT appointment this morning, we headed over to Strong for Cara's eye appointment. During the vision part of her exam, she struggled more than ever to use just her left eye (the one she turns away from using) to see things at a distance of about 10 feet. I was covering her right eye and could feel her wanting to turn that left eye away and try to use her right eye. The doctor and I had a long discussion about the cause of this problem, why the surgery in October didn't work, and what we will do next:

1. Cara was born with a weak muscle behind her right eye (the good eye). This muscle imbalance caused that eye to float up and out slightly. I never noticed this, but he documented this at her first two visits before the surgery.
2. An eye imbalance can cause a person to have a sort of double vision. In order to correct this, a child learns to tilt and turn their head in order to only use one eye. Cara chose her right eye.
3. By continually choosing to use her right eye for distance vision, she was thereby weakening the vision in her left eye.
4. In October the surgery attempted to clip the muscle behind the right eye in an effort to weaken it, making it more in balance with the left eye.
5. Sometimes after the surgery, the muscle will heal and reattach itself to the eyeball, making a repeat surgery necessary. This is the doctor's theory for why Cara continues to tilt her head.

So, the next step is to try patching her right eye. She will wear an adhesive patch over her right eye two hours a day. Hopefully this will help train that lazy left eye to become stronger and improve the vision in that eye. We will go back to the doctor in August and if things haven't improved we will consider repeating the operation. I'm still not sure how patching will improve the muscle behind the eye if has reattached itself, but I'm trusting the expert here.

Potty training, cancer/back pain worry, and eye patching! Good times over here at my house. Tomorrow it is just me, my 4 kids, and our problems:) It's a good thing that I just adore these 4 kids so very much. It's also a good thing that I realize in the world of problems, I'm blessed to be dealing with these!

Feeling Confused

Matt and I are still trying to sort through what this next phase of Brady's care is going to look like. In all honesty, we feel WAY out in left field, all by ourselves, calling all the shots. By going to Sloan we in turn seemed to have almost cut ties with Strong. I know I have used this expression before, but Brady isn't on any one's "To Do" list. It is up to us to ask for blood work, urine analysis, scan dates, and I have to say I'm started to crack a little under this pressure. So we thought we had made a clear decision to just go to Sloan for the scans. However, in just dealing with the scheduling process, I feel all the old familiar frustrations of being a little fish in a big pond. For example, we still don't have a doctor there who we deal with. We have very briefly met with 3 of their oncologists during our 3 trips there, all of whom learned about Brady upon walking into the office to meet with us. We don't have "a doctor" to call when we have a concern. For example, I had to call the surgeon's office to ask how to get scans scheduled. They gave me the number of the oncologist's office that I said I had liked the best. A different oncologist's office called me two days later with scan dates. If we do go there we will just have the scans done, then come home. We will have to initiate a meeting with "a doctor" if we want one, and if you remember there are no real appointments, you just kind of go and wait. So how does this play out if we are having to go down there every 3-6 months for the next 5 years? Who is our go-to person? When/where is Brady having his blood/urine tested? We are toiling over these questions and are frustrated that we have been sort of left in the dark to make these decisions. Please be praying that we will have a clear cut plan of action soon...My opinion is that we have enough to worry about just living with a child with cancer, we need a doctor to coordinate his care. We don't want that job anymore!

I forgot to give an update on Cara's appointment yesterday! I really liked the new eye doctor. He is noticing some irregular movement with her right eye, however, she did not do the head tilt that we see at home. It is hard to recreate the situations where we see it when she is in a small exam room. She only tilts her head when looking at things in the distance, further than about 10 feet. He feels that what I am describing and what he saw sound like a 4th nerve palsy in that eye, basically a weakening of her eye muscle. There is a quick surgical procedure to correct this, but he needs to see her again at least once to really pin down the problem. Although we have been dealing with this for 1 1/2 years now, I'm glad I found a doctor that is listening and willing to do something about it. We go back in September.

Allie had her appointment with the dermatologist today regarding the spot on her leg. The doctor said it is a Juvenile Xanthogranuloma (technical, I know, but I like to have it written down somewhere!) Basically it is just a small, bumpy, orangey-brown spot on the back of her thigh. It may grow, it may go away, but it isn't likely dangerous. He gave us the option of leaving it or removing it. Hey---if this mom is given the option of easily removing something from her kids body--that is a no-brainer! We are going to have it taken off, it will be an office procedure with a numbing needle-stick and then a few stitches. Poor Allie, but in the scheme of life in the past year, seems easy!

RSVP's for the Brady Bash are rolling in! Hooray! Can't wait to celebrate!

You are Invited!

For a while now we have had the idea of having a big celebration to mark the end of Brady's treatment! I remember during the really tough times in NYC, Matt and I would look at each other and say, "When this is all over, we are going to have a huge BRADY BASH!" Well, we are ready to celebrate!

We would like to invite you, yes YOU, to our home to help us celebrate Brady's journey, his life, and the miracles God has done for him. Matt and I also want to share a time of celebration with our family, friends, and community as a way to say THANK YOU to all who have stood by us in the last 6 months. What better way to put chemotherapy and two major surgeries behind us then to have a BIG PARTY!

Here are the details:
WHEN: Saturday August 15th 4pm until ?

WHERE: Our house (most of you know where we live, if you don't please email me and I'll give you directions:)

WHO: We want to include as many of "Brady's supporters" as possible! If you are reading this, YOU ARE INVITED!! I would love to send out invites to every single person who has supported, us, prayed for us, or donated to our cause, but it just isn't possible!

DETAILS: Come for dinner, dessert, and to have a great time! Some great friends of ours have donated the use of a huge bounce house and we will have many other fun activities for kids!

HOW TO RSVP: Please send me an email at [email protected] to RSVP. I do need somewhat of a count so that I can plan for food!

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No news from Sloan today. I'm hoping to hear from them by the end of the week. Our summer schedule is pretty busy, so it will be interesting to see how a trip to NYC fits in. Hopefully it will be just a 2 day trip.

Please pray for Cara as we go to the new eye specialist tomorrow regarding her head tilting. This is our "second opinion" doctor, and I'm really praying that he hears my concerns and can help us solve this mystery! Our appointment is at 8am in Rochester.

Sick of Sick

Williams family health report:

Brady--threw up in a big way at 8:20am, is clingy, looking white as a ghost, canceled PT for today

Allie--was up constantly throughout the night, lots of gunk draining from her ear. Took her to the doctor, the verdict? Double ear infection and a ruptured ear drum on her left side. A stronger antibiotic, with "upset stomach and diarrhea" as side effects. Wonderful...

Cara and Eli---doing great!

I made an appointment for Cara to see a different eye specialist on July 8th. I feel good about it and hope we get to the bottom of things. There are so many people around me going through far worse right now. When I feel bad for myself, I think about the dear families with children at Sloan who right now, today are battling for their child's life. I just have to keep plugging along and be thankful that we are all here, together:)

Here is a link to an article I wrote for the Make a Difference To One site. You can check it out HERE Remember to scroll down.