Monday, November 30, 2009
Because Brady isn't potty trained, collecting his urine is very tough. It involves sticking a bag to him and hoping that when he pees it goes in the bag. He hates this process (who wouldn't?) so we always try and do it while he is under anesthesia. As I carried him into the nursery to explain things to him, it hit me. This Brady is a VERY different Brady than he was months ago when we needed to do "procedures" every day. Back then, he was still a "baby." There wasn't a lot of explaining that needed to be done. Mostly we just had to distract him and console him when something hurt. Well, I realized as I looked at him, that he is so much more aware of his world, understands when something not normal is going on, and needs a lot more than just distraction to comply with something like this. I quickly told him that Dr. Korones called and told me that he needed to have some of his pee pee so that he could make sure everything is okay. He looked at me like I had three heads, and then I showed him the bag. He instantly got upset, almost like he remembered the look of sterile packages and those types of things. I was able to talk him down and promised him it wouldn't hurt. We got the bag on and about an hour later when I checked, he had a good sample in there. When I went to put it in the sterile cup, Brady REALLY looked at me like I had three heads. He sees me putting pee into a cup, then looks at me and says, "Dr. Korones not drink pee pee in the cup!" Oh Brady, mommy just about dropped it and ruined everything!
All afternoon I thought about this whole scenario. It was really no big deal, but yet, it just dragged my heart right back into the days of harder times. But just as fast as I started feeling awful about what we have been through, I thought of how blessed I am. Thank you God that all I had to do today was collect pee from my child. Thank you God that I didn't have to flush a Broviac coming out of his chest, or change a dressing that ripped at his skin, or watch as nurses pull out a chest tube from his tiny body. Thank you God that it wasn't the day that chemo dripped into his body as I sat and watched, and thank you God that tomorrow will be as normal as today was for my boy.
There are SO many families dealing with those realities today. And I say this not to sound condescending, but you have NO idea how awful it is until you have to deal with it. I don't even know the horror of some families who have lived this life for years. And there are families out there doing these things every day with the full knowledge that the cancer is not going away.
As the CHRISTmas season begins, I feel so differently about things this year. Just to have us all here, in this house, brings me the greatest joy. I'm so blessed to share the wonder and miracle of CHRISTmas with my children. Matt and I say everyday how excited we are about this year.
Thank for listening to my ramblings tonight. I'm so glad to have a place to share my feelings as I continue on this journey...
Sunday, November 29, 2009
The kids goofing around with Grandpa
We got the kids adorable Polar Bear cookies while in Syracuse. They loved them!
Saturday, November 28, 2009
Of course we shopped for 2 days at one of the biggest malls in the country. This is one of only a few times in a year that Matt and I actually shop together. We didn't do that well at getting names crossed off of our list, but we enjoyed the time together. This afternoon we went to see Blindside which was a great movie!
Now we are home and are both so glad that we put our Christmas decor up before we left! It's so nice to sit and relax in the glow of the Christmas tree!
My friends I hate to burden you with a story of another child fighting cancer, but I know there are several prayer warriors out there who will join me in lifting up a family in prayer. The McKinney family needs prayer for their daughter Anna who has leukemia. You can click here to read her story and keep updated. She is from the Rochester area, being treated at Strong, and sees the same doctors as Brady. Matt and I will be praying about and discussing a way in which we can help this family. Thank you for helping us in this area.
Thursday, November 26, 2009
Jammies all morning....
Watching the Macy's Thanksgiving Day Parade with our kids...
Tears while watching my kids watch the parade, thanking God for the many blessings He has given me...
Decorations outside and inside done...
And a great Thanksgiving meal at Matt's parent's house!
I hope that your day was just as wonderful!
I'll be on hiatus for the next two days as Matt and I will be out of town:) It is time for our annual overnight in Syracuse. Two days of Christmas shopping and an Orangemen game await us! As well as 4 meals with just the two of us! That means not having to cut up anyone's food into small pieces, no picking up dropped cups off the floor, no bargaining with toddlers for one more bite, no mealtime tantrums....woo hoo! (of course you know I'll miss them like crazy!)
Wednesday, November 25, 2009
My thankful thoughts for today come from my three sweet 2 1/2 year olds. We colored turkeys this week and I asked them what they are thankful for. They are pretty good at verbalizing this because at prayer time we always start by saying "Thank you Jesus for ______." Sometimes they say adorable things like "Thank you Jesus for outside, for my trains, for cookies." Most of the time they use this time to say thank you for the simple pleasures in our day and for the people in our lives.
Brady's pictures looks quite a bit more "worked on" than the other two because he asks to color every day. And for three days in a row he asked to "color my turkey" so each day he added more and more!
Now go eat some turkey everyone!
Tuesday, November 24, 2009
Brady had his once a month PT visit today and was just amazing. Linda and I both noticed gains he has made just since his last visit. I'm so glad we are able to go and keep on top of the areas he needs to work on, and to be able to celebrate what he has mastered. Today he rode his little tricycle all over the building...he looked like such a big boy! I noticed a little bit more "personality" today, and by "personality" I mean, a little 2 1/2 year old stinker who is going to do about 75% of what you tell him to, and the other 25% will be what he thinks he should do. Oh that Brady!
My thankful thought for today: I'm thankful for all of the amazing people God has brought into our lives through Brady's illness. There have been new friendships made, countless acts of kindness, amazing doctors, caring therapists, and so many others that have touched our lives in positive ways. It's neat to see how God has used this tragic circumstance for good.
Monday, November 23, 2009
Sunday, November 22, 2009
I attempted to get some Christmas stuff up today, but I didn't get far at all. I have a hubby who inst' yet feeling the spirit, so I told him I would try and get it done myself. Well, I have the fall stuff down and a half lit wreath hanging by my back door.
With four days until Thanksgiving, I'd thought I'd start off the week with a thankful thought and continue doing so throughout this week.
My Thankful thought for today: I'm thankful for a God who saved me by His grace and sees me through the storms of life, always giving me what I need to go on.
Saturday, November 21, 2009
Here are some sights from our house today!
Thanks Kristen for reminding me through these pictures how precious my babies are!
Friday, November 20, 2009
A few of you asked about Allie's doctor's appointment and any recommendations from the pediatrician about car sickness. We actually saw a different doctor yesterday, but did briefly talk with our doctor in the waiting room. Unfortunately neither doctor had any solution for the problem. One recommendation to try was switching her position in the car. I'm going to try putting her in the middle seat in the back row, middle position is supposed to be better, but back row is worse. Hmmm! There are medications for older children but they knock you out for 3-4 hours so that is not an option right now.
I forgot to mention that the doctor could no longer detect her heart murmur! This is an answer to prayer for sure! We do still have to follow up with the cardiologist in January, but that should be the end of it.
I wish you all a wonderful weekend? Anyone else digging out the Christmas stuff? I should probably put the scarecrow away first...
Thursday, November 19, 2009
So I pulled over, got out of the car, stood in the rain, and started cleaning her up. Once I realized she needed to be changed from head to toe, I decided to go back around to the other side of the van and get in so I could keep us all warm and dry. I said a quick prayer that God would protect us as we were pulled over with semis whizzing by at 70 miles an hour. I changed Allie, plunked her into another car seat, and off we went. While I was unloading the kids and getting soaked, I realized that I didn't have an extra coat for Allie. So she went without a coat and we probably looked pretty raggedy by the time we arrived.
After that fiasco, the doctor's appointment went pretty well. Allie continues to be in the 80-85th percentile for height and weight. She is meeting all of her milestones and exceeding many of them! She got two shots without even blinking a eye, no crying at all. We checked Brady's weight and according to the scale (which I'm convinced is the most inaccurate scale around) he is up almost 3 pounds. Although I don't think he has gained that much, I was satisfied that the doctor won't be quite as concerned for a while. Then the poor guy had to get a shot. I didn't tell him about this ahead of time and felt awful when he realized it was his turn. He made quite a fuss, but recovered quickly! My poor boy...he really has quite a lot of disdain for the medical community!
The weekend is here again! I was able to find outfits for the boys so we are all set for family pictures Saturday. This is an area for prayer:) Will the Williams Family be able to sit still, all 6 of them, long enough to get a decent family picture? Divine intervention needed!
Wednesday, November 18, 2009
Mom and I did really well handling all 4 kids just the two of us. Allie was in her stroller and the big kids walked, holding hands of course! They stuck together all day and outside of a few "Brady moments" the day was a big success! The best part of the day was that Allie didn't get sick at all! We were in the car at just the right times both in the morning and the afternoon so that she slept the whole time. I was so happy that she didn't' have to feel sick at all (Okay, I was also happy that I didn't have to clean up barf:)
Tomorrow is Allie's 1 year check up and Brady's weight check and immunization. I'm praying that Brady is cooperative and does okay with the shots. He just had a shot last week, so I know he isn't going to want to go back to the doctor. And for Allie I'm praying for no signs of her heart murmur and a solution for her motion sickness!
Tuesday, November 17, 2009
I let Eli bring his good pal Snuffy on our adventure. He dragged that thing around by the snout all day long, too cute! He even told the waitress, "This is my nuffy. He lives on Sesame Street and in my crib!"
Our mission was to find outfits for the boys to wear for our family pictures Saturday. Our mission sadly failed. It is SO tough to find boys' clothes, especially dressy ones. When I did find a few things, they didn't have the boys size and more than one of each item. So the search goes on...
Brady, Cara, and Allie had a fun day at home with Grandma. I'm so blessed to have such wonderful grandparents in our lives. Not only do I trust them completely, but the kids are so comfortable with them and I don't think they miss mommy much when they get to spend time with them!
That's all for tonight! Can you believe Thanksgiving is next week?
Monday, November 16, 2009
I'm going to attempt to update things a bit in coming weeks. I do have a wonderful girl who contacted me online who wants to makeover my blog for free, but she can't work on it until February. Maybe by then I can figure out a few things too. I want the blog to remain a place for Neuroblastoma families to come and read about our experience. I want this blog to be a cyber scrapbook of our family's life. I want this blog to be a place where people can come and read about God's grace in the midst of life's trials. And I want this blog to be a place where I can just share about life, and hopefully be encouraging, or at the very least, entertaining! So I'm figuring out ways to organize all of this into a wonderful place to stop by once in a while!
Nothing too exciting happening this week. We are getting our family pictures done on Saturday (hopefully a Christmas card picture) so I need to get to a mall to pick up things to complete our outfits. It is such a chore to dress 6 people head to toe in outfits that look good together. Allie has her one year appointment on Thursday. Brady is coming with us to get his weight checked and to catch up on an immunization that he missed when he was on chemo. We also have to retest his urine levels. The lab wasn't able to get both the HVA and VMA levels with the last sample. Our pediatrician will be giving us a kit to take home. He will have to wear a bag overnight and hopefully we will have a sample and not wet sheets in the morning. He is going to just LOVE this (insert sarcasm here!)
Hope your week is off to a great start!
Sunday, November 15, 2009
So here is my list of 5 small successes for the week. I'd love to hear yours too!
Megan's List of "Tiny" Accomplishments (in our house, our kids love the word tiny)
1. I tried a new recipe for pumpkin crumble, and it was well received both those wearing bibs, and those without.
2. I sorted through clothes that have been piling up for months in the kids' closet making consignment, garage sale, giveaway, and save for Allie bins.
----I'm pausing for a few minutes while I rack my brain...
3. I wrote out thank you cards for Allie's party.
4. I came up with a gift idea for all of the children on our Christmas list (all 16 of them!)
5. I mastered a plan for keeping Allie as clean as possible in the van knowing that she will get car sick.
That was harder than I thought!
I hope your weekend was a great one!
Saturday, November 14, 2009
The kids looked like this as we left the house...
They were SO cute I could hardly stand it. Here we went, hand in hand, across the parking lot and marching into the home improvement store! They had the sunglasses, the aprons, and their hammers in their pockets ready to go! We had a great time making little garages and even got a little wooden race car to go inside. A few friends of ours were there too, so that made it even more fun. And what kid doesn't love to go and look at all of the Christmas decorations? They pushed every button on every tacky automated piece of Christmas decor that the store had...FUN!
We had a great dinner at Grandma's house and the kids spent time with their cousins. Oh, and before I go, I have to share these pictures of Eli. This is his best friend "Nuffy" (Snuffleupagus from Seasame Street). He has both "little nuffy" (a small plastic one) and "big nuffy" (a larger stuffed Snuffy that mommy found online last year for Christmas). He brought both Nuffies to snack time today and I cracked up watching him feed Nuffy some raisins!
Friday, November 13, 2009
The dreaded potty training project is still hanging over my head. I keep telling myself, "I'll do it after the holidays" like it is some sort of New Year's Resolution or something!
All of a sudden the kids don't NEED to be in a wagon or stroller. They can walk next to me, hold hands in a parking lot, and they do all of this quite well. I guess it makes things easier, but a small part of my heart breaks to think that they don't that safety and security anymore.
The kids are still in cribs (thank GOD!!) I guess they are unusual in that they have never climbed out. I planned on keeping them in their until at least Kindergarten (ha!) but Brady had to go and break a wrung on his crib the other day. He was falling down on purpose and being super silly, and I heard a wrung crack and fall onto the floor. It isn't fixable and now the pressure is on to get toddler beds for them. Wait a minute!!??! They will be able to get out of bed whenever they want, do whatever they want in their room? I want my control back!!! I'm seriously sweating this transition too...
So, they are growing, changing, exploring, testing. All things they are supposed to do, but all things that keep me on my toes every day. Thank goodness for Allie. She gladly wears diapers, rides in her stroller, and sleeps soundly in her crib!
Thursday, November 12, 2009
This morning I heard the triplets talking about some sort of bug in Allie's room. I went to investigate and saw a ladybug on the wall and three very inquisitive children standing over it. I told them to leave it alone and they answered by saying, "No mommy, MACK (smack) IT!" I guess they picked up this whole "smacking" concept during the summer months when we smacked the occasional fly or bee in the house. I told them to just leave the ladybug alone and I went about my business. All of a sudden I hear them hollering and running toward the kitchen yelling, "Let's go! Mack it!" They grabbed their plastic play utensils from their kitchen set and ran full speed towards Allie's room like an army rushing to battle. I followed them and came into the room to see them trying to whack the life out of that poor bug. I was a little shocked by the violence of it all, so I told them to come sit down so I could tell them a story. The conversation went something like this:
Me: "Mommy wants to tell you something special about everything in our world. All of the animals, and plants, the sun, and even that bug was made by God."
Them: "Wow. Made by God!"
Me: "Yes, even YOU were made by God. Everything that is alive in our world was made by God. So that little ladybug was made by God too. And it makes God sad if we kill the ladybugs that He made."
Brady: "Yeah. Mommy...Cara macked the ladybug!"
Cara" (in a very slow, deliberate voice) "No Mommy, BRADY macked GOD's ladybug!"
Me: laughed hysterically
I love those little innocent minds. They are so clueless and wonderful all at the same time and talking with them is SO much fun!
Wednesday, November 11, 2009
Okay so after that great shot, the kids were looking down at the dirt. Mom and I said, "Okay guys, look up!" We wanted them to look at the camera, and the very literal minds of toddlers led to this pose...
I asked the kids to sit next to each other on the hill so I could take a picture. They did for a milisecond, then started sliding down the hill on their bums.
Tuesday, November 10, 2009
Cara was simply adorable as we browsed the toy aisles. A confession here...my kids have each only been in a store probably 5 times a piece, maybe less. She had no recollection of a toy aisle and to her, it was heaven on earth. She was so sweet about it though...she got onto her knees in the cart and just said things like, "Oh Mommy, look at that!" and "That is so wonderful!" She didn't want to leave the toy department, but luckily the Christmas tree displays were just down the way. We went to lunch at Applebees and just had a wonderful time. I love enjoying my kids one at time.
Tonight I had another great MOPS meeting! And after I got to go out with a few amazing friends. Now it's 11pm and I feel old and tired, but it was worth it:)
Monday, November 9, 2009
Sunday, November 8, 2009
Saturday, November 7, 2009
Tonight we had a great visit with Matt's Grandma Vera. We were going to go out to dinner, but decided to stay in and order take out. The kids warmed right up to Grandma even though we only see her a few times a year. Her birthday is Monday so we sang to her and the kids brought her an Oatmeal Cream Pie with a candle in it! Good memories for sure...
I promise to take a ton of pictures tomorrow. I've copied a lot of great party ideas from a blog I've been reading for a while. It is called Creative Party Place and is basically a site where people can submit party ideas from parties they have hosted. It is a lot of fun to read and has really inspired me to make my invitations, decorations, and favors.
Hope you are all having a good weekend!
Friday, November 6, 2009
One year ago today she was born into our family, making us a family of 6. Many of you already know this, but she wasn't a planned addition to the family. I say that with such a smile now because I would never want to imagine my life without her, our family without her, and my heart without all the joy that she pours into it each day. I may not have planned for her, but I KNOW that God did.
You see, my pregnancy with Allie came a a critical time in our lives. The triplets were around 9 or 10 months old when I found out I was pregnant. I was trying to decide if I should go back to work or not in the fall. I was praying that God would give me some clarification on what he wanted me to do next in life. That clarification came loud and clear! I had three babies and was pregnant with the next, and to be honest, I wasn't very excited at first. I was panicked at the thought of how we would handle another child. We had survived the infancy stage with the triplets and were just starting to feel like our heads were above water again. But after a few weeks, I decided that this baby was all part of the plan for us and my excitement began to grow. I was going to stay home, at least for another year and raise our 4 babies full time.
You all know what happened in the next months...our concerns about Brady grew. As the pregnancy progressed, our worries about Brady did too. He wasn't walking and I watched him closely day after day wondering what was wrong. This is where I now realize God had a plan and reason for bringing Allison into our lives even before she was born. Because I was pregnant, I wasn't going back to work...and because I wasn't going back to work, I was home and able to focus a lot of time on Brady and getting him the help he needed. I truly don't know if I would have been able to keep on top of his issues had I been back to work full time.
Allie came into the world on November 6th at 9lbs 1 oz. Her arrival was uneventful in our eyes. A planned C Section with only 1 doctor, a resident, a nurse, and an anesthesiologist seemed like nothing compared to when the triplets were born. My OB told me just the other day that she remembers Allie's deliver so well because Matt and I were calm and joking around the whole time. It was such a difference to have a big, healthy baby. Allie weighed more than Cara and Brady combined at birth! And she got to be in the room with me whenever I wanted. I finally got the chance to do things the "normal" way. To me, that has been another way that God has used Allie to bless my life.
We brought our pretty baby home and life didn't change that much. I'm sure you can imagine that Matt and I thought having this one baby was the easiest thing ever. She was a very good baby and I think the easiest to take care of out of all of our children.
Thursday, November 5, 2009
Anyway, when I finally arrived home and had dinner with the family (Chinese take out!) I was quickly, and thankfully zapped backed into perspective by an email I received. A blog reader emailed me and brought to my attention the story of a boy, a boy who is dying from Neuroblastoma.
I don't know many details, other than his name is Noah, he is 5, and he has been battling this disease for 2 1/2 years. He is not expected to live until Christmas, so his family is celebrating this weekend. Their wish is so to have as many Christmas cards arrive to their home as possible. I'm not sure if I send one out tomorrow that it will make it there this weekend, but with your help I'd like to see MANY cards sent to Noah from all of Brady's friends. Here is his name and address:
1141 Fountain View Circle
South Lyon, MI
Thank you for your help on this! Most importantly, help me keep this family lifted up in prayer. I don't have any website or caringpage info on him yet, if I do I will pass it along.
Perfectly sweet Allison turns one tomorrow. We are celebrating her birthday officially on Sunday. I'm so grateful for her little life...more on that tomorrow...
Wednesday, November 4, 2009
Never in my life have I been more confused and frustrated by a health concern in regards to my children. Honestly, I understood Brady's cancer treatent protocol better than I understand all of this swine flu stuff. It has become apparent to me that no one knows...thus the confusion. I was 100% opposed to the vaccine about 2 weeks away. No way, no how was I letting anyone inject more stuff into my kids. Then kids start dying, people I know start getting sick, and I start reconsidering the risk/benefit for my family. I've come to the conclusion that I have to put my uneasiness aside and vaccinate my children for H1N1. The turning point came when a local child died after contracting H1N1 and I started thinking "what if?"
I remember how helpless I felt when Brady's life was at risk, when we didn't know if he would live or die, when we had to hand him over to surgeons we had never met. I hated that feeling, but there was nothing I could do about it. So now I am confronted with this swine flu thing, and trust me, I'm quite skeptical person when the government tells me to do something. However my sentiments starting changing when I allowed myself to imagine the guilt I would feel if one of my children did get it, and hadn't done what I could to prevent it. I hated the way that felt.
Okay, so I have decided to get our family vaccinated (when I say I, I mean "we!" Matt and I have been 100% in agreement on this issue:) Sounds easy enough? Oh wait, no one seems to have this crazy vaccine. There is a clinic tomorrow that I will be dragging my children to (well the oldest three). The health department had an article in the paper that I literally read 10 times and still don't understand what they were saying. They tried to list what was available and who should/shouldn't come. It made NO sense. We are going anyway. How fun it will be to stand in line for who knows how long and then watch as the first, the second, and the third child gets squirted up the nose by a stranger. It frustrates me to no end that I am unable to bring my child to their doctor's office, discuss everything with my doctor, and then have her vaccinate them. But, we have to do what we have to do.
So there, that is my take on the vaccine issue. I've been telling my friends as we discuss this (and boy, I think I have discussed this with just about all of my friends) that the best I can do is pray about it, make a decision, and pray for peace about it.
I'm adding this to my list of "Motherhood is hard because..."
Tuesday, November 3, 2009
So with our new Tuesday and Thursday schedule (no PT), I thought maybe we should try and get out of the house once in a while. With my mother in law here to help those days, it actually is quite easy to get out on the town.
Today we decided to head to Akron to see Matt and Grandpa at work. They work within 2 minutes of each other, so it was a fun and pretty easy day. After a brief pull-over due to my carsick baby, we arrived at Matt's office. For those that don't know, he is a physical therapist, so his "work" proved to be a playground for the kids.
Cara was hilarious! She kept calling the bike her motorcycle. “Look daddy! I’m on my motorcycle! Vrooom Vroom!”
Allie followed Matt as he worked on patient.
Look Linda! Brady got some PT in today while visiting the PT clinic! Good work on that incline Brady boy!
Matt rolled his eyes when I wanted to get this picture, but he’ll be glad someday!
Then we headed to Grandpa’s office to visit with him! He was so surprised! The kids had fun stealing all of his snacks out of his desk!
They played with sticky notes…
Cara even sat in the boss’s chair! Honestly, I think we have a CEO on our hands here!
Last we went brought Grandpa to McDonald’s for lunch. What a great day!