Tuesday, June 30, 2009
Monday, June 29, 2009
Sunday, June 28, 2009
No PT this week. Allie has a follow up for her ear infection on Wednesday. She is doing SO much better! I can't say enough about the miracle Maalox/Desitin diaper cream.
A few pictures to make you smile as you say goodbye to the weekend. I asked the kids to show me their favorite "friend" that they sleep with:
Cara and her BabyBear
Eli and Snuffy (lovin those fake smiles!)
Brady and Elmo!
Saturday, June 27, 2009
We loaded the trio into the wagon and Allie into her stroller and walked to the "other side of town." Remember in our little town with only one stop light, that is about one mile. I told the kids we were going to get french fries, to which they replied, "Walk to Donalds (Mc Donalds)?" We picked up Grandma on the way and ended up at Alli's Cones and Dogs, a cute little counter service place new to our town. We sat outside and enjoyed hot dogs, burgers, fries, and of course ice cream on the way home. Oscar the Grouch dined with us too (Brady)! It seems in a family with 4 small kids, someone is always in a bad mood. It was fun despite the crabbiness!
Eli wanted to wear his sunglasses!
Summer is for ice cream!
Don't forget to check out the sign up for our Alex's Lemonade Stand! CLICK HERE
Friday, June 26, 2009
We fumbled through the day with some fun, a few tantrums, a handfull of timeouts, a few handfulls of marshmellows, some chalk drawings on the side of the garage, water table play, way too many episodes of Barney, a Santinos pizza (yeah!), and finally daddy home just in time for bed!
The kids are very funny to listen to these days as they try and explain the world. Today as they chattered during the thunderstorm, Eli kept saying, "Rumble, rumble in the sky!" A little later he came into the living room and said,"What's happening on Barney?" As I was changing Cara's diaper today she proudly pointed to it and said,"Oatmeal, peas, and pizza in there!" Those are three things she ate today...ha!
Plans continue for our Lemonade Stand...to find out how you can help, CLICK HERE!
Thursday, June 25, 2009
Every single time I think about selling lemonade I think about the families that I know that have a child battling cancer. I think of Stephanie who is 8 months pregnant with her second child and is back forth from Iowa to NYC for weeks at a time as her daughter Dakota fights for her life. I think of Aaron who reached out to help Matt and I in countless ways as we faced our trip to NYC. All the while, his precious son Eli has been fighting this disease for 2 years, all while being away from his mommy and brother back in Iowa. I think of my new friend Laurie who lost her amazing son Michael to leukemia... My friends, I thank you for realizing how important it is to me to do something to honor these warriors and these families. I pray, I pray every day for them. I'm so honored to do so, and I'm so excited to do this project to raise money to improve treatment options for children with pediatric cancers.
No big family news today. Allie continues to get better every day. I took her with me to Jackson school this morning for the end of the school year breakfast. Yes, I've been on maternity leave for 2 1/2 years, but I still love my school family:) She was an absolute doll and it was fun to spend time with just her!
You can CLICK HERE to link to the Alex's Lemonade Stand sign up sheet!
Wednesday, June 24, 2009
It's official, I've lost my identity to my two year old son. In the last week while out in public, two people have asked me,"Are you Brady's mom?" It really cracks me up! Listen Brady...let's not forget you still wear diapers and I can outrun you! At least for now:)
Today's Health Report: Everyone is feeling pretty good around here! I have to spread the word about the magic diaper rash remedy that a blog reader told me about (THANK YOU SHELLEY!) I squirted a whole tube of Desitin into a tupperware container and added some Maalox liquid antacid (probably about 3-4 tablespoons). It is amazing! Her little bum is looking SO much better. I also have started her on Culturelle which is an over the counter probiotic which restores the good bacteria to her digestive system that the antibiotics have stripped away. She still has some diarrhea, but much better than the past few days. Thank you to everyone who has been praying for her and for all of the good advice!
I have finally put together some information about our Alex's Lemonade Stand. If you are interested in helping, you can CLICK HERE. Also on the blog is an official Alex's Lemonade logo that you can click on to find out more about the organization.
Tuesday, June 23, 2009
Brady is standing on a mat that is a little bit squishy to help him work on balance.
Cara showing off her new swimsuit!
Monday, June 22, 2009
Allie continues to struggle with tummy troubles. She's not eating well, sleepier than usual, and just off. I'm taking her to the doctor tomorrow on our way home from Brady's PT session. Let's just hope we can get through the drive to Rochester, PT, and the drive to the doctor without a blow out:(
Sunday, June 21, 2009
Saturday, June 20, 2009
1. The first time I realized that Matt was a great dad was when I was pregnant with the triplets. As a grew from big to huge to mammoth, I would struggle to do day to day tasks while being at home during the day. Sometimes I would apologize that I didn't get much done, to which he would always reply, "Meg, your ONLY job is to incubate!" He cared so much for Eli, Cara, and Brady before they were born.
2. When the triplets did arrive, they spent their first two weeks in the NICU. While recovering in the hospital, Matt would spend the night with me. When I woke up every morning, he was no where to be found. The nurse would inform me that Matt had gone down to the NICU at the crack of dawn to make sure he got to feed the babies first thing in the morning.
3. I need sleep, I'm miserable without it. By the time the triplets were 3 months old, I was crying throughout every night feeding. I just couldn't handle being with them all day, and then being up twice during the night. Right about that time Matt took over night feedings all by himself. Since then he has sleep trained all 4 children during the night. I can't think of a more selfless thing to do for your wife!
4. Matt cares about the details when it comes to caring for the kids (sometimes a little too much!) If he comes home from work and the kids are in their pjs, he will ALWAYS ask, "Do you have onesies on them? What if they get cold? That's it, I'm putting onesies on." And he does...
5. When Allie was born, Matt was totally smitten with her from the first minute she was born. He spent the next 4 days asking everyone at the hospital, "Have you ever seen a more beautiful baby?"
I could make a much longer list, but I just wanted to give you a glimpse of how blessed we are to have Matt as the daddy in our family!
God took my husband, an only child, who had never changed a diaper in his life, and turned him into an amazing father. He is more proud of his four children than any father I know....
And Daddy....we are proud of you too!
We love you,
Megan and Eli, Cara, Brady, and Allie XOXXO Happy Father's Day
For Matt's present, I had our favorite photographer Laura (momentsphotographybylaura.blogspot.com) take that awesome shot of Matt and Brady walking and put a beautiful poem on top of the picture. I couldn't figure out how to resize the finished product on here, so instead I'm putting up the picture and the poem separately. If you know our story, Brady's story, then you will understand how special the words to this poem are...
"Walk a Little slower, Daddy." said a little child so small.
Sometimes your steps are very fast, sometimes they're hard to see;
Someday when I'm all grown up, You're what I want to be.
And I would want to lead just right, and know that I was true;
Friday, June 19, 2009
Please pray for Allie as her stomach is not tolerating the antibiotic well at all. I need to call the doctor in the morning and see what they want to do. My poor baby... Brady was "throw up" free today, and despite being a little grouchy, is getting back to himself.
Have a great weekend everyone!
To sign up or if you have questions, you can leave a comment after your post (type comment, choose anonymous, don't forget to put your name in the post) or email me at firstname.lastname@example.org.
There are three ways in which we need help:
1.Volunteers to work at our stand.
2. Sponsors for the products that we need to have our stand.
3. Volunteers to bake "lemon-themed" goods to sell at our stand.
You can also donate directly to our Alex's Lemonade Fund by CLICKING HERE. You can help find a cure for pediatric cancer!
STAND VOLUNTEER LIST (I will be updating this list daily)
**3 Volunteers needed in each time slot, unless indicated***
Sunday September 6th
10:00-12:00am Sue Moore and daughters (time slot filled)
12:00-2:00pm Indian Falls United Methodist Church (time slot filled)
2:00-4:00pm Danna Gominiak, Lynn & Wes Wilson (time slot filled)
4:00-6:00pm Greg & Claudia Gelder, Stefanie Clark , Nancy Hamm (time slot filled)
6:00-8:00pm Peggy Lamb,Anne Engel, and Kamilla Kabel (time slot filled)
8:00-10:00pm Bates Family (time slot filled)
Monday September 7th (Labor Day)
10:00-12:00am(During parade-4 volunteers needed) Michelle Sczudlo & family (time slot filled)
12:00-2:00pm (After parade- 4 volunteers needed) Lori Penepent & family
2:00-4:00pm Tracy Puzan + 2 (time slot filled)
4:00-6:00pm Maier Family (time slot filled)
6:00-8:00pm Baxter Family (time slot filled)
8:00-10:00pm (help take down booth) Ron and Sandy Williams (time slot filled)
Volunteer Bakers (Bake "lemon theme" goods and drop off to me Saturday Sept5th) I'm open to your ideas, we just can't do lemon meringue pie as this will be sold at the Methodist Church Tent.
***more than 1 of the same type of thing is OKAY!!***
1. Lynn Wilson (lemon bars)
2. Kay Emanuel (lemon cookies)
3. Rosalie Mangino (lemon cupcakes)
4. Danielle Riggs (lemon bars)
5. Nancy Hamm (lemon bars)
6. Michelle Sczudlo (lemon poppyseed bread)
7. Amy Bolton (lemon pound cake)
8. Laura Luft (gluten-free lemon cupcakes)
9. Ann Marie Suttell (lemon cookies)
10. Ruthie Snyder (lemon blueberry bread)
11. Amanda Morrison (lemon cookies)
SPONSOR LIST (Items below are needed to run the stand. I'm not sure on amount yet, I will be working on that soon. If you know of an organization who would like to help, please contact me email@example.com)
1. Water--- Culligan Water, Akron NY (thanks Grandpa!)
2. Lemonade (Country Time or similar brand) -I think we have enough:)
3. Large bags of Ice Heather Landers
4. Coolers (to borrow)-- Jodi Peters, Heather Landers
5. Big insulated dispensers (Gatorade-style) for lemonade Rosalie Mangino and Rachael Latour
6. Helium for Alex's balloons to decorate our stand--Rachael Latour
7. A large sign to go across the front of our stand (printed with the Alex's Lemonade logo)--looking for a sponsor for this, or someone who has a connection:) --Joe Capan
I will continue to update this page, so keep following the link from the main page of the blog.
WE APPRECIATE YOUR HELP!!!
Thursday, June 18, 2009
Other interesting news today. There was a bank robbery about 4 miles from our house in the "next small town over." The bank robbers somehow ended up on foot, two were apprehended, and one was running loose somewhere within 2-3 miles from my house. Of course I had no clue this was going on, after all they don't interrupt Imagination Movers or Sesame Street with such breaking news. So at nap time, I headed up to Target, while my mother in law stayed with my sleeping kids. When I saw a state trooper and about 20 police cars and media along side of the road, I got a little nervous. Twenty seconds later when my van was being searched by the state trooper while he held a shot gun, I thought maybe I should call my mom and see if she knew what was going on. Once I heard the big news, I called home, told Sandy to lock my doors, and continued to Target. This bank robber wasn't going to stop me from hiding out for an hour or so at my little oasis. The whole way home I saw state troopers at each field with shotguns and binoculars. Come to find out robber #3 was apprehended along that same road I was driving on within minutes of me driving by. All of this excitement in our little neck of the woods...By the way, I've heard the robbers apparently got their get-a-way car stuck in the mud somewhere and while "escaping" on foot they left a money trail behind them. HA!!!
Well, plans for the lemonade stand are in full swing! Here are a few more details:
Dates: September 6th (Sunday) and September 7th (Monday-Labor Day)
Location: Oakfield Labor Daze Celebration at Triangle Park
Times: Sunday 10:30-10:00pm and Monday 10:00am-9:30pm
In the weeks ahead, I'll be looking for volunteers to work 2 hour shifts. We will also be coming up with a list of products that we need and would like to find donations for. I should be receiving my planning packet from the foundation any day. So excited!!!
If you haven't already, please check out the video that I posted yesterday! There is also a link to the Alex's Lemonade Stand on the right side of the blog where you can click and read a lot more about this amazing foundation!
Wednesday, June 17, 2009
Since Brady's diagnosis Matt and I knew that for the rest of our lives we would support the cause of curing pediatric cancer. It's hard to do that when you are in the midst of the battle...but we were always talking about ways to "pay it forward" and make a difference in the world of family's affected by pediatric cancer. Now that we have had a few weeks to take a deep breath, we are ready to start helping!
We are pleased to announce that our family will be organizing an Alex's Lemonade Stand this year at the Oakfield Labor Daze Festival (our local summertime festival).
Who is Alex? Why are we selling lemonade? Before I explain any further, please take a minute to watch this video that will introduce you to Miss Alexandra Scott and her dream of helping to cure pediatric cancer, one cup at a time. Turn on your volume and CLICK HERE In her short 8 years, Alex lived a BIG life. She courageously fought Neuroblastoma while raising 1 million dollars for pediatric cancer research!
Our goal is to provide lemonade to our customers for whatever donation they choose to make to help in the fight against pediatric cancer. The Alex's Lemonade Stand Foundation is a not-for profit foundation that provides funding for pediatric cancer research grants. Since Alex began with her lemonade stand, the foundation has raised 25 million dollars in research money!
Matt and I feel led to do this for so many reasons. We are doing this to honor Brady who courageously has battled this disease for 5 months. But we are also doing this to honor so many children and their families who have fought this disease for years, sometimes more than once, and often times loosing their precious child to cancer.
I will have a lot to share about this project in the coming months. We will set a fundraising goal soon, set up an Alex's Lemonade Stand page on their site, and start organizing volunteers and sponsors for the products that we need. Of course that means I will be asking for your help!! I will have more specific information about how you can help soon! In the meantime, if you would like to be involved or have any suggestions, please feel free to email me at firstname.lastname@example.org.
Please join me in praying that God will lead us in this project and we will be able to share our family's testimony and help an important cause at the same time!
Tuesday, June 16, 2009
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.
Monday, June 15, 2009
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?
Sunday, June 14, 2009
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!
Dream baby was there too!
Saturday, June 13, 2009
Actually the kids are doing okay considering. They are eating and playing almost like normal. Brady ate a great breakfast and promptly threw up. After a few seconds he told Matt, "Daddy clean it up!!??!" Then he went about his day. My dear husband did great this morning, as always, even with a few sick children. I found some great deals at some garage sales and enjoyed a quiet lunch at Panera Bread (yummy yum).
We were looking forward to maybe going to a parade tonight and to church tomorrow. But alas, the health status of my 4 children dictates our plans once again. Looks like we are going to stay put and try and get rid of what ails us!
Some exciting news: I wrote an article for a blog called Multiples and More and am featured there today. You can CLICK HERE to read it! I'm feeling a little like Angela Lansbury hunched over my type writer these days, but I truly enjoying writing!
Friday, June 12, 2009
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!
One of our greatest Brady fans needs our help! Her husband and his band are in a competition sponsored by Kingdombound. They need votes in order to move on in the competition. Click here to vote. You will have to enter your birth date and complete an email verification in order to vote. The band is called PS100 and you will have to scroll way down to find them and vote! Thank you!
Thursday, June 11, 2009
I would like to take this chance to thank you Santinos for being a part of our family. It is about once a week on a day when I can't take one more crying child, one more dirty diaper, and one more tantrum that I look to you to make my day just a little easier. You see, planning dinner each night is a tricky task with 4 toddlers underfoot. What a joy it is to pick up the phone, dial those precious numbers (948-5266) and know that in 30-45 minutes dinner will be served. All I have to do is open the box, cut three pieces into tinier pieces, and throw it at my hungry brood on a paper plate. Ahhh...Santinos, you make me happy, you make me a better mom!
ps...As I sat to write tonight I didn't have much to say, but the half-eaten box of pizza sitting next to me on the counter gave me such inspiration:) Happy Thursday everyone!
Wednesday, June 10, 2009
Brady just seems to be all smiles since his surgery Friday. Other than the occasional Brady-I'm-as-stubborn-as-a-bull-when-I-want-to-be episodes, he is just the happiest boy. He just walks around the house all day, playing, talking, giggling. Eli, Cara, and Brady are all in this great stage where they are starting to use their imaginations! I love to hear their morning-chatter after breakfast. Lately they usually pack up the play shopping cart or doll stroller and say "Bye Mommy, Goin to the baseball game." When I ask, "With who?" They answer,"Go with Grandpa!" I also spend many minutes of the day pretending to eat the delicasies that my trio cook for me in their play kitchen. Some of their favorite dishes to "cook" for me are peas, macaroni, and chocolate milk. I love it!
Tuesday, June 9, 2009
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...
Monday, June 8, 2009
Sunday, June 7, 2009
8-10am Everybody up and get ready to go.
10:30am Grandma Kathy picks Cara up for the day. They went to church, lunch, to grandmas, and then to do some shopping.
11:45 Matt, Meg, Eli, Brady, and Allie leave the house and head to Sunset Bay. We drop Allie off with Grandma Sandy and Grandpa Ron at their cottage. Allie wasn't feeling well again today, a little fever and runny nose!
2:30 Matt, Meg, Eli, and Brady continue driving to Erie PA to go to a birthday party. Happy Birthday Carter.
6:00 Arrive back at Sunset Bay, Burger King in hand, and give the boys a quick dinner at the cottage. Matt, Meg, Eli, Brady, and Allie drive home.
8:15pm Arrive home where Cara is already asleep in bed. Get everyone else settled and ready for bed.
Brady report: My once completely reserved and clingy mamma's boy was a happy-little-partygoer! A few minutes spent warming up and he was walking all over the place even amidst quite a crowd of people. Minnie Mouse was a surprise guest at the party and when Brady saw Minnie, he bolted away from me waving, and saying, "Hi Minnie, Hi-i-i-i-i!" The new tradition of backseat bickering continued part of the way home from Erie. Today's debate, does Daddy drive a van or a car. Of course, Daddy usually drives his car, but on family outings he is the captain of the awesome van.
It sounded something like this:
Eli: "Daddy drive the blue van."
Brady: "No! Daddy drive the black car!"
Eli: "Daddy drive the VAN!"
Brady: "NO! Daddy drive the car!"
Eli: (almost crying) "Daddy drive the VAN!"
Mommy: "Who wants to watch an Elmo DVD?"
A great time was had by all! What a busy weekend. Matt and I are tyring to get the house in some order since we really slacked on household chores. All in the name of fun...bring on summer!
Saturday, June 6, 2009
Friday, June 5, 2009
Brady boy is home and happy. He is eating scrambled eggs, toast, and peaches!!!
Thursday, June 4, 2009
Today was a busy, fun day. Brady and I went to PT this morning. I'm starting to kind of cringe as I watch Brady be somewhat defiant these days. When PT Linda asks him to do something, sometimes he does, sometimes he says "no!", and sometimes he just goes and does something else. I know this is typical 2, and don't get me wrong, I love seeing Brady assert some control in his life, but I also want him to be a sweet, compliant boy. Not so sure that is in the cards for our hero Brady.
Brady and I flushing his tubies for the last time tonight. I was a little sentimental honestly. Notice Brady in the picture below cleaning his tubie with the alcohol pad all by himself. I kind of let the rules of a steriel procedure slide tonight! By the end of it, I had Brady saying "See ya tubies!" Isn't he a cutie?
Wednesday, June 3, 2009
Two more days with Brady's tubies! I have to admit I was a little sentimental tonight as I flushed Brady's Broviac. The two of us have had quite a bit of alone time while taking care of that thing, and some laughs too! Brady can completely tell me the whole process of what to do and now is even starting to do a lot of it! I'm certainly not going to miss having to pull that dressing off once a week while he screams and having to bathe him in 2 inches of water in the sink. We are wondering if the three amigos will even all still fit in our bathtub! We'll see! I call tomorrow for Friday's surgery time.
I'm really behind on planning my words for my speech Friday night. I could talk for hours about Brady's story. I have to find a focus for what I want to talk about. My pain priority is convey a message of hope through Brady's story. It is difficult to know that there will be many there who have lost a loved one to cancer. Please pray that God will use me to inspire hope in those who are there.
Tuesday, June 2, 2009
The exciting news first! At about 5:30 tonight I answered the phone and I hear, "Mrs. Williams? This is Sloan Kettering calling, Dr. L will be speaking with you in 20-30 seconds." And sure enough, there he was. He was calling to tell me that he reviewed Brady's scans when they arrived last week, and that the tumor board reviewed his case again today. Here is a summary of their meeting:
1. There is a small amount of tumor still left in the foramina (spinal column area). Having another laminectomy (surgery) is the only option to remove it. However this is very invasive. The tumor board feels that given Brady's intermediate risk status, that it is more reasonable to leave this piece of tumor in there.
2. They estimate that somewhere between 95-99% of the tumor was removed! Hallelujah:)
3. The area where the big tumor was in his chest "looks good."
4. The tumor board recommends rescanning him in 6 months. This differs from the 3 month timetable we were originally told. Matt and I have to really think about this one. Dr. L does not want us to continue doing CT scans. He discussed with me the risks of repeat radiation due to CT scans, something we haven't considered until this point because the scans were necessary. He thinks that MRI scans of the chest should give a good look at the chest and spine area. If something shows up, then a CT can be done.
5. Dr. L kind of "encouraged" me to bring Brady to Sloan for the scans every 6 months. I think Matt and I are seriously considering it. There are many reasons to consider it. Sloan doesn't use intubation during an MRI, Strong does. The radiologists at Sloan see WAY more NB cases than Strong, so the scans will be read by people much more familiar with this disease. The flip side, of course, is that by scanning in NYC we will again be fracturing ourselves from our doctor here at Strong. I think we will continue to have that sense that no one is in charge. A lot to think about.
Tonight we celebrate this wonderful news. Tonight we look ahead to Friday's surgery. I can feel God's amazing grace pulling the storm clouds away from our family. I know this road is so long, certainly there will be times of trial ahead. But I'm so happy that God gives me days like today when it is just impossible not to shout praises to Him for all He has done!!!
We had a great time today with the reporter and photographer from the Daily News. Hopefully the story (and picture) will run Thursday. The photographer loved the Williams kids! I really think Allie stole his heart :)
Monday, June 1, 2009
While playing with Allie in the living room this evening, I tickled her and said "Hey there jelly belly!" After playing this game with her a few times, Brady came up behind me with his shirt pulled up and said "Hi pizza belly!"
Our kids have become very into singing the Happy Birthday Song. After putting them down the other night I could hear Eli singing in his crib. I went to the door and listened, this is what I heard: (Sung to the tune of Happy Birthday)
Ah-Pee Bir Day To Yooooo
Ah-Pee Bir Day To Yooooo
Ah-Pee Bir Day to YOU Nuffy (his Snuffleupagus that he sleeps with!)
Ah-Pee Bir Day to Yooooo
I tend to say the same little "pet phrases" to the kids. I say "Hi handsome" to Eli, "Hi princess" to Cara, "Hi cutie" to Brady, and "Hi Allie Ballie" to Allie. Imagine my surprise when Cara came up to me last week and said "Hi princess!"
Every morning Matt gets the kids up before going to work. The first thing he does when he goes in their room is put up the shade. Lately Brady and Cara have been arguing over the weather forcast. It sounds something like this:
Brady: "Sunny day!!!"
Cara: "Cloudy day!"
Brady: "SUNNY day!"
Cara: "NO! CLOUDY day!"
This is such a fun age! I love hearing all that they say each and every day!
Tomorrow we are not going to PT after all. Our PT had a meeting and wanted us to come later, but we already have another appointment. A reporter from the Daily News is coming to do a story on Brady in an article about the Festival of Hope. I'm praying that the photographer will use a great shot of JUST Brady. I plan on making his as adorable as possible to help my cause, perhaps I'll just stay in my pjs! I'm so proud of my little man!