After a little bit of chaos this morning, Brady and I arrived in Henrietta for his first PT appointment at exactly 8:30am. At the last minute before leaving I remembered that Dr. L had given me a letter saying Brady was cleared for PT. Long story short, I couldn't find the letter and it took me 15 minutes to not find it. Then I forgot my gas tank was empty! After a quick stop for gas we were on our way. We actually went to an Al Sigl Center that houses center based programs for children with disabilities. We met with Linda a wonderful and kind PT who worked with us for close to 2 hours. She didn't know much about Brady other than he was suspected of having CP at one point, that we later found out it was cancer, and that he had two surgeries. I think she was quite surprised to see our hero Brady crawling, standing (he didn't attempt walking), and cruising around like a champ! I have to say that it has been a while since I have told "our story" to someone from the beginning. Doing so caused me to really reflect on the scope of the past three months while driving home. As I looked in the rear view mirror at his sweet, sleeping face, I couldn't help but tear up as I thought about what my child has endured. All the pain, scary moments, new faces...yet he still trusts me, he still loves to explore his world, he still giggles. God is so good to have protected his innocence despite all that has happened.
Anyway, back to PT. It looks like he will have two sessions a week for 30 minutes each. She wasn't even sure he would qualify given how well he is doing, but after scoring the test, he will qualify. I'm glad to have a specific time set aside to focus on catching Brady up! He deserves that one on one time.
On a lighter note, I have made it to the top ten in the Mother of All Bloggers Contest!!! The top ten was chosen by a panel of judges. The next part of the contest is from now until May 6th. The winner will be chosen by people who go to the website and VOTE!!! I don't believe that you need to be a member of momlogic to vote. You can either:
1. Go to the Mother of All Bloggers icon to the right, click on it, and then find the Steps for Brady logo and vote.
2. Or go to http://community.momlogic.com/group/motherofallbloggers and vote that way!
Please pass this info on to anyone that you think would be willing to vote! I'm so excited to think of all who will be reading about Brady and learning about NB! Thanks for all of your help in getting me this far in the contest!
Thursday, April 30, 2009
Wednesday, April 29, 2009
Step by Step
Brady did a little more walkin' today!! He certainly picks and chooses when he will do it. He will ONLY walk on the carpeted play room which makes things tricky because that is the only carpet in our house! I think the soft surface gives him a little more stability and some cushion when he falls.
I'm so glad so many of you enjoyed the video yesterday. Matt worked really hard to get it online. I'm trying to get the kids on tape singing so be watching for that in the next few days.
Tomorrow Brady and I will leave at 7:30 for PT. I'm praying for him to build a good relationship with the PT. We are praying every day that the scans (hopefully in the next few weeks) will show no new disease. We are praying that soon Brady can have surgery to take out his Broviac. I changed his dressing tonight and he was in pain. His skin is getting very sensitive and washing the area burns. He was itching at the site a lot afterwards and it was bothering him so much. We can't wait to have it out so Brady can enjoy everything this summer!!!
Keep the prayers coming for our hero Brady!!
I'm so glad so many of you enjoyed the video yesterday. Matt worked really hard to get it online. I'm trying to get the kids on tape singing so be watching for that in the next few days.
Tomorrow Brady and I will leave at 7:30 for PT. I'm praying for him to build a good relationship with the PT. We are praying every day that the scans (hopefully in the next few weeks) will show no new disease. We are praying that soon Brady can have surgery to take out his Broviac. I changed his dressing tonight and he was in pain. His skin is getting very sensitive and washing the area burns. He was itching at the site a lot afterwards and it was bothering him so much. We can't wait to have it out so Brady can enjoy everything this summer!!!
Keep the prayers coming for our hero Brady!!
Tuesday, April 28, 2009
Brady Walkin'
Matt is uploading a video as we speak of Brady taking some steps today! Two different times today he got in the mood to walk! He was having a great time walking back and forth between grandma and I this afternoon. Later tonight he walked to grandpa and Matt got in on tape! The cutest is that Brady kept saying "Brady walkin!"
Brady has his PT evaluation scheduled for Thursday at 8:30. We are going to CP of Rochester which has a pediatric outpatient clinic for physical therapy. I don't know too much more about the facility, but it has been highly recommended to us. Please be praying that Brady will get over his fear of new people and feel comfortable during this appointment. I think we will be going two times a week. It is about 50 minutes each way, so this is a big committment. I'm really excited to see Brady soar!!!
Check back later for the great video!
Sorry about the delay - long story, big headache.
Matt
CLICK HERE FOR BRADY VIDEO
Brady has his PT evaluation scheduled for Thursday at 8:30. We are going to CP of Rochester which has a pediatric outpatient clinic for physical therapy. I don't know too much more about the facility, but it has been highly recommended to us. Please be praying that Brady will get over his fear of new people and feel comfortable during this appointment. I think we will be going two times a week. It is about 50 minutes each way, so this is a big committment. I'm really excited to see Brady soar!!!
Check back later for the great video!
Sorry about the delay - long story, big headache.
Matt
CLICK HERE FOR BRADY VIDEO
Monday, April 27, 2009
Catching Up Monday
Isn't this weather crazy? Those that know me know that I totally don't enjoy the heat, so I'm not all that excited about our little heat wave. We did spend some time outside after dinner tonight and it was quite lovely because it had cooled off a little! You have to love Western New York!
I called Sloan today to see if more test results had come back. I'm not sure who called me back, but whoever it was was kind of short with me. She told me that they had given us the results last week when we were there. Yes, we did get some results (sizes of what was removed and the make up of the tumor), however, I explained to her that we were anxiously awaiting news of the histology results. Like I explained before, more than likely the tests will show the same results that were done in January, placing Brady in the intermediate risk category. However, we have heard that in rare cases testing of large portions of the tumor reveal that in fact the disease is high risk. She told me that Brady's case will most likely be discussed at the Tumor Board tomorrow and that someone will call me, although she doesn't think the results will be back by tomorrow. Ughh...
I also touched based with Strong to see when we can get the MRI and CAT scans scheduled. Our fabulous NP Laurie who works with our Dr. Asselin, our oncologist, will be calling me back regarding scheduling the tests.
Here's a cute story about our hero Brady: While we are outside tonight, Matt showed the kids the new sand box! They each kind of stood around the outside playing with the sand. He finally told them that it was okay to get in the sand box. Our Brady climbed right in and started digging around! Cara got in after about 15 minutes, and poor Eli, he never got in even after 30 minutes! As cautious as Brady is with people, he really is more of a risk taker than Eli and Cara. I love to see him enjoying life and doing new things! Go Brady...
I called Sloan today to see if more test results had come back. I'm not sure who called me back, but whoever it was was kind of short with me. She told me that they had given us the results last week when we were there. Yes, we did get some results (sizes of what was removed and the make up of the tumor), however, I explained to her that we were anxiously awaiting news of the histology results. Like I explained before, more than likely the tests will show the same results that were done in January, placing Brady in the intermediate risk category. However, we have heard that in rare cases testing of large portions of the tumor reveal that in fact the disease is high risk. She told me that Brady's case will most likely be discussed at the Tumor Board tomorrow and that someone will call me, although she doesn't think the results will be back by tomorrow. Ughh...
I also touched based with Strong to see when we can get the MRI and CAT scans scheduled. Our fabulous NP Laurie who works with our Dr. Asselin, our oncologist, will be calling me back regarding scheduling the tests.
Here's a cute story about our hero Brady: While we are outside tonight, Matt showed the kids the new sand box! They each kind of stood around the outside playing with the sand. He finally told them that it was okay to get in the sand box. Our Brady climbed right in and started digging around! Cara got in after about 15 minutes, and poor Eli, he never got in even after 30 minutes! As cautious as Brady is with people, he really is more of a risk taker than Eli and Cara. I love to see him enjoying life and doing new things! Go Brady...
Sunday, April 26, 2009
Back to Work
We had a busy day!!! The whole gang made it to church this morning and then grandma took Eli, Cara, and Allie home. Matt, Brady, and I drove to Webster for the Angels of Mercy Spaghetti Dinner. It was a great time and we are so thankful to this organization for donating a portion of their proceeds to benefit Brady. Thank you to all of our friends and family who came to the event as well! Brady had a great time eating spaghetti and cake:)
Here are two pictures from the benefit today. The "angels" at Angels of Mercy prayed over Brady:
Tomorrow it is back to business around here. I have several calls to make regarding some insurance issues and I need to touch base with the PT clinic to set up Brady's eval. Most importantly I need to call Sloan to see if the rest of the tests are back from Brady's surgery. We are continually praying that the results of the biology studies will still place Brady in the intermediate risk category. I also have to call Strong to set up a schedule for Brady's scans.
Since we have been home it is so easy to forget about the cancer world. Yes we have the daily care of Brady's Broviac and the constant reminders when looking at his scars. But we are home, no appointments for a while, and I guess I should feel really content. I just don't. I am struggling with this whole "monster under the bed" feeling that at any moment it will come crawling out and attack us once again. The parents who are in the monitoring phase call it "scanxiety"...all of the anxiety and fear that is wrapped up in the scanning and waiting phase. So I'm looking to God's word for strength and wisdom as we enter this next phase. I'm praying for courage and the ability to cherish each day despite the uncertain future. Thanks for letting me vent:)
Here are two pictures from the benefit today. The "angels" at Angels of Mercy prayed over Brady:
Tomorrow it is back to business around here. I have several calls to make regarding some insurance issues and I need to touch base with the PT clinic to set up Brady's eval. Most importantly I need to call Sloan to see if the rest of the tests are back from Brady's surgery. We are continually praying that the results of the biology studies will still place Brady in the intermediate risk category. I also have to call Strong to set up a schedule for Brady's scans.
Since we have been home it is so easy to forget about the cancer world. Yes we have the daily care of Brady's Broviac and the constant reminders when looking at his scars. But we are home, no appointments for a while, and I guess I should feel really content. I just don't. I am struggling with this whole "monster under the bed" feeling that at any moment it will come crawling out and attack us once again. The parents who are in the monitoring phase call it "scanxiety"...all of the anxiety and fear that is wrapped up in the scanning and waiting phase. So I'm looking to God's word for strength and wisdom as we enter this next phase. I'm praying for courage and the ability to cherish each day despite the uncertain future. Thanks for letting me vent:)
Saturday, April 25, 2009
More Birthday Memories
We woke us this morning to the many reminders that we had a great party here last night. Cards and gifts were strewn all over the house! The kids had a great time exploring their new toys and eating leftover cake and cupcakes! Tomorrow is another busy day...church then off to Webster for the Angels of Mercy Spaghetti Dinner.
Some great Brady news: Today he stood up completely on his own. Up until now he pulls himself to stand using a table or something close by, then will let go and stand for a while. He wanted to use his new T ball set, so Matt told him he had to stand to play T ball. So he just pushed up from the ground, planted one foot, then the other, and stood there! He can even bend to pick up the bat and ball without holding on to anything! He is learning to take a swing with his bat! Way to go Brady:)
Here are a few more pictures:
Our fabulous cakes dropped off by a neighbor that were a total surprise:) Thanks Kim!
Allison is sitting up all on her own now!
I love this one! Cara is admiring her painted toe nails while sitting in the afternoon sun.
Silly Brady with his sunglasses on!
Eli and his new Snuffleupagus!
Some great Brady news: Today he stood up completely on his own. Up until now he pulls himself to stand using a table or something close by, then will let go and stand for a while. He wanted to use his new T ball set, so Matt told him he had to stand to play T ball. So he just pushed up from the ground, planted one foot, then the other, and stood there! He can even bend to pick up the bat and ball without holding on to anything! He is learning to take a swing with his bat! Way to go Brady:)
Here are a few more pictures:
Our fabulous cakes dropped off by a neighbor that were a total surprise:) Thanks Kim!
Allison is sitting up all on her own now!
I love this one! Cara is admiring her painted toe nails while sitting in the afternoon sun.
Silly Brady with his sunglasses on!
Eli and his new Snuffleupagus!
Friday, April 24, 2009
Happy Birthday!
I just love living in our small town! In the past week alone I've had a dear neighbor drop off bread fresh from the oven, the local florist help me fill up one last birthday balloon with helium and refuse to take any payment, and a fellow triplet mom drop off three surprise amazing birthday cakes that she made for my kids! We are so blessed by the support of our community:)
The kids had a wonderful birthday!!! What a joy to see the three of them together celebrating two years!!! They looked adorable in the outfits my mom had embroidered with their names. They received some wonderful gifts and loved the Sesame Street decorations:) We even got to spend an hour or so playing outside with everyone after dessert!
I spent many moments today just thanking God for these wonderful memories! How richly we have been blessed by our 4 wonderful children!!! I continue to stand in awe of the miracles God has done in our lives to allow us to all be together on this day...
Here are a few pictures from the party:
Eli, Mommy, and his new trike!
Cara in her party dress
Brady STANDING up next to his new T ball set
The kids had a wonderful birthday!!! What a joy to see the three of them together celebrating two years!!! They looked adorable in the outfits my mom had embroidered with their names. They received some wonderful gifts and loved the Sesame Street decorations:) We even got to spend an hour or so playing outside with everyone after dessert!
I spent many moments today just thanking God for these wonderful memories! How richly we have been blessed by our 4 wonderful children!!! I continue to stand in awe of the miracles God has done in our lives to allow us to all be together on this day...
Here are a few pictures from the party:
Eli, Mommy, and his new trike!
Cara in her party dress
Brady STANDING up next to his new T ball set
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