Thursday, December 9, 2010
Hurry up and wait...hurry up and wait...
My dad always use to say "it's just like in the Army, hurry up and wait!" Not long after the conference this summer, I got the ball rolling on getting the Medpor implant for Bennett. Fast forward to now...we've had 2 people say it's covered and 2 people say it's not. So, since this surgery will be in the ballpark of $40,000.00, we want to make sure it is COVERED before we do anything! We are having the dr in California write a letter to the insurance company stating this is not "cosmetic" as the insurance company claims. Let's hope and pray they cover this, I don't want to think about the "what if they don't"!
Wednesday, August 25, 2010
Whew...we're back!
We've been back from California for 2 days now, and I have to say I'm still dizzy from the trip. So much information to process, and still so much more information to gather. I thought it would all slow down once the conference was over, but NO!
Our trip started on Thursday (Aug. 19). We drove down to my sister's place, who not only offered to take care of our 1 year old daughter, Ella, but offered to drop us off and pick us up from the airport. (I do, indeed, have the best sister EVER!) B was fascinated with the airport. The security check-point, the restaurants and cafes, the moving sidewalks, the planes flying in and out...I don't think he even blinked the whole time we were there. He was great on the plane, which I was grateful for (I didn't want to be the one with "THAT" kid who gave everyone a headache!). Friday was the conference, which lasted all day. B was in daycare all day, which he enjoyed. The presentations were great, the information was useful, and the doctors were all very helpful and eager. Both Nathan and I took many notes and asked a lot of questions.
Saturday, we had our individual appointments scheduled for the afternoon, so we took the opportunity to take B to Disneyland in the morning. Unfortunately, we traumatized him right off the bat by going on the "It's a small world" ride. He screamed and cried the whole entire ride. He didn't want to leave the comfort of the stroller for a long time after that. We did coax him onto some more rides that were "Bennett-friendly", meaning no singing puppets or tunnels. And I got my picture taken with Mickey...I think you can see a tear in my eye in the picture.
Our appointments started at 1pm and went all afternoon. We talked with doctors who do the rib graft surgeries (using a piece of rib to shape an outer ear) and the Medpor surgery (using an artificial material for the outer ear). We also talked with a surgeon who does jaw distraction. All of these gave us oodles of information. But the appointment that sticks out in my mind the most was the appointment with the doctor who does atresia repair (building an ear canal). He looked at B's CT scans and said he is NOT a candidate for atresia repair. To make a long story short, he doesn't have the air pocket that is needed for an ear canal, and his facial nerve falls right where they would put the canal, making it too risky to attempt. This was heartbreaking news, since we had our hopes up so high after the CT scan results. He does have the inner ear, so he is a candidate for the Baha hearing aid (or something similar), so that is a road we need to explore further.
After all of the appointments, we went back to Disneyland and that put a smile back on our faces. We saw the parade, met up with some dear friends for dinner, then fell exhausted into our beds.
Sunday brought another day of Disneyland, but we were all so beat we didn't stay long. We met up with some more dear friends, and then relaxed in our room and pool the rest of the day. Poor B fell asleep in the restaurant, a first in his book!
Monday was an early day, catching the shuttle bus at 5am to go to the airport. We made it safely home without incident (we even received compliments on how well behaved B was) and were greeted by my sister and Ella in hot, steamy Minnesota. The drive back to Duluth was a bit long but we made it safe and sound.
Like I noted before, there are still a lot of roads we need to explore. This conference did indeed give us answers, but it also gave us a whole new set of questions. We are now leaning more towards the Medpor implant (you can google it for more information), which would mean another trip to CA, plus a ~3 week stay in CA...eek!!
On a side note, Ella started walking while we were away. Actually, it was about 3 hours after they dropped us off at the airport. Luckily, they got it on tape so we can see it. I'm glad my sister and brother-in-law got to be the first ones to see the event!
Our trip started on Thursday (Aug. 19). We drove down to my sister's place, who not only offered to take care of our 1 year old daughter, Ella, but offered to drop us off and pick us up from the airport. (I do, indeed, have the best sister EVER!) B was fascinated with the airport. The security check-point, the restaurants and cafes, the moving sidewalks, the planes flying in and out...I don't think he even blinked the whole time we were there. He was great on the plane, which I was grateful for (I didn't want to be the one with "THAT" kid who gave everyone a headache!). Friday was the conference, which lasted all day. B was in daycare all day, which he enjoyed. The presentations were great, the information was useful, and the doctors were all very helpful and eager. Both Nathan and I took many notes and asked a lot of questions.
Saturday, we had our individual appointments scheduled for the afternoon, so we took the opportunity to take B to Disneyland in the morning. Unfortunately, we traumatized him right off the bat by going on the "It's a small world" ride. He screamed and cried the whole entire ride. He didn't want to leave the comfort of the stroller for a long time after that. We did coax him onto some more rides that were "Bennett-friendly", meaning no singing puppets or tunnels. And I got my picture taken with Mickey...I think you can see a tear in my eye in the picture.
Our appointments started at 1pm and went all afternoon. We talked with doctors who do the rib graft surgeries (using a piece of rib to shape an outer ear) and the Medpor surgery (using an artificial material for the outer ear). We also talked with a surgeon who does jaw distraction. All of these gave us oodles of information. But the appointment that sticks out in my mind the most was the appointment with the doctor who does atresia repair (building an ear canal). He looked at B's CT scans and said he is NOT a candidate for atresia repair. To make a long story short, he doesn't have the air pocket that is needed for an ear canal, and his facial nerve falls right where they would put the canal, making it too risky to attempt. This was heartbreaking news, since we had our hopes up so high after the CT scan results. He does have the inner ear, so he is a candidate for the Baha hearing aid (or something similar), so that is a road we need to explore further.
After all of the appointments, we went back to Disneyland and that put a smile back on our faces. We saw the parade, met up with some dear friends for dinner, then fell exhausted into our beds.
Sunday brought another day of Disneyland, but we were all so beat we didn't stay long. We met up with some more dear friends, and then relaxed in our room and pool the rest of the day. Poor B fell asleep in the restaurant, a first in his book!
Monday was an early day, catching the shuttle bus at 5am to go to the airport. We made it safely home without incident (we even received compliments on how well behaved B was) and were greeted by my sister and Ella in hot, steamy Minnesota. The drive back to Duluth was a bit long but we made it safe and sound.
Like I noted before, there are still a lot of roads we need to explore. This conference did indeed give us answers, but it also gave us a whole new set of questions. We are now leaning more towards the Medpor implant (you can google it for more information), which would mean another trip to CA, plus a ~3 week stay in CA...eek!!
On a side note, Ella started walking while we were away. Actually, it was about 3 hours after they dropped us off at the airport. Luckily, they got it on tape so we can see it. I'm glad my sister and brother-in-law got to be the first ones to see the event!
Wednesday, August 11, 2010
Countdown to California!
"Mama, can we go to the airport, then to California, then to Disneyland? Wouldn't that be FUN?!"
This sentence leaves Bennett's mouth about 14 times a day. Needless to say he is very excited for the trip (notice he didn't mention the actual REASON for this trip to CA, the conference, hehe!). Nathan is excited, too, he has never been on a plane before. I am more nervous than excited, although I have to say once we actually GET to CA I'll be excited. Flying with a 4 year old who doesn't even like riding in elevators may test my patience, but I am hopeful. I am excited to see the doctors, hear what they all have to say at the conference, and learn their opinions of B's CT scan. I am also very interested in meeting families who are going through what we are going through with doctors, schools, teachers, surgeries, and personal struggles. And yes, we've decided to "do Disneyland", which I have to admit is a childhood dream of mine, I may cry shamelessly when I see Mickey.
Eight days left in the count-down. It has been such a crazy summer, so it seems only fitting to end it with a crazy trip! My friends in Louisiana have told me this conference is life-changing, and I have faith they are right.
This sentence leaves Bennett's mouth about 14 times a day. Needless to say he is very excited for the trip (notice he didn't mention the actual REASON for this trip to CA, the conference, hehe!). Nathan is excited, too, he has never been on a plane before. I am more nervous than excited, although I have to say once we actually GET to CA I'll be excited. Flying with a 4 year old who doesn't even like riding in elevators may test my patience, but I am hopeful. I am excited to see the doctors, hear what they all have to say at the conference, and learn their opinions of B's CT scan. I am also very interested in meeting families who are going through what we are going through with doctors, schools, teachers, surgeries, and personal struggles. And yes, we've decided to "do Disneyland", which I have to admit is a childhood dream of mine, I may cry shamelessly when I see Mickey.
Eight days left in the count-down. It has been such a crazy summer, so it seems only fitting to end it with a crazy trip! My friends in Louisiana have told me this conference is life-changing, and I have faith they are right.
Friday, July 9, 2010
What a benefit!
Wow, I'm still recovering from the benefit this past Wednesday! What an event! We served about 175 people, which was amazing. The silent auction had 53 items in it ranging from quilts to power drills to handmade cards. The bake sale had more baked goods than a bakery! FOUR 8-foot tables filled the room, just dripping with baked goods. Bars, cookies, breads, whole cakes and pies, jams, salsas...it was endless. And then there was the spaghetti! The meat sauce was donated by Chef Dale Beaubien from Restaurant 301 in the Sheraton Hotel in Duluth. The "non-meat" sauce was donated by Super One Foods. The salad was donated by Drew Truckey. The coffee was donated by Toni Poupore-Haats. Bread was donated by my mom, Vickie Anderson. And to fill in the gaps were gift cards from Cub Foods and Sam's Club. And of course what kind of an event would it be without the orange drink donated by McDonald's. Every single tummy was full, I can tell you that!! Some even came up for seconds, and a few brave souls came up for thirds. The whole room was buzzing with such positive energy the whole time. Everything fit together perfectly, and even the things we didn't think of beforehand fell into place as if they were planned.
We told Bennett we were going to a "spaghetti party", and he was all excited. We went around to the tables and he said "Thank you for coming!", but we know we didn't get to see everyone (so thank you EVERYONE!). He also played a little dinner music on the piano for everyone, which may have been one of his favorite parts of the night.
Like I said, we served around 175 people, and this could not have been done without the super volunteers that donated their time and sweat to make this happen. Many of them were there before 10am, and a lot of them stayed until the bitter end at 7:30pm. We are so very appreciative to these many people, we cannot say "thank you" enough! A big thank you also goes out to Concordia Lutheran Church for giving us the space, the time, the people, the hard work, the donations and the prayers. Thank you to all of the bakers out there who donated their delicious baked goods, I wish I could've "quality checked" them all! Thank you to all of the generous people who donated items to the silent auction, what a wonderful array of items! A special thank you to Lynne Erickson for doing the silent auction, and to Anne and crew for doing the bake sale. Thank you Bret, Pam and Pastor Dave for calming all of my nerves and for all of your hard work. And I'm sure I'm forgetting someone or something, THANK YOU!
We told Bennett we were going to a "spaghetti party", and he was all excited. We went around to the tables and he said "Thank you for coming!", but we know we didn't get to see everyone (so thank you EVERYONE!). He also played a little dinner music on the piano for everyone, which may have been one of his favorite parts of the night.
Like I said, we served around 175 people, and this could not have been done without the super volunteers that donated their time and sweat to make this happen. Many of them were there before 10am, and a lot of them stayed until the bitter end at 7:30pm. We are so very appreciative to these many people, we cannot say "thank you" enough! A big thank you also goes out to Concordia Lutheran Church for giving us the space, the time, the people, the hard work, the donations and the prayers. Thank you to all of the bakers out there who donated their delicious baked goods, I wish I could've "quality checked" them all! Thank you to all of the generous people who donated items to the silent auction, what a wonderful array of items! A special thank you to Lynne Erickson for doing the silent auction, and to Anne and crew for doing the bake sale. Thank you Bret, Pam and Pastor Dave for calming all of my nerves and for all of your hard work. And I'm sure I'm forgetting someone or something, THANK YOU!
Friday, July 2, 2010
5 days until the Big Benefit!
Wow! I can't believe the benefit is in less than a week! It is all coming together, like a big puzzle...you can't tell what the final picture will look like, but with the help of others, pieces are put into place and you start to see the shape of it all. I keep saying "it takes a village to raise a child". Well, it takes a whole community to put on a benefit! So many people have helped, and will help, it's unbelievable!
Nathan and I really want to thank everyone for their support, prayers and donations. Everything helps, EVERYTHING!
News on the Bennett-front: B started preschool last week. He cannot get enough of it! He is in the deaf/hard of hearing class and is doing very well. They speak and sign in this class, which is fun for B since he loves sign language (even though he only knows a few words from home). I think his favorite thing about preschool is the bus. Yes, he gets to ride the big yellow school bus to and from school. He literally runs onto the bus, and starts waving and blowing kisses before the door is even closed. The driver and aids asked if they could take him home with them since he's such a sweet boy. It's always nice to hear other people say what we already know: Bennett is the sweetest boy on earth!
Bennett's Big Adventure Benefit
Spaghetti Dinner, Silent Auction & Bake Sale
When: Wednesday, July 7, 2010, 5-7pm
Where: Concordia Lutheran Church (2501 Woodland Ave, Duluth)
Cost: $10 per ticket, or $35 for a family of 4 or more
Nathan and I really want to thank everyone for their support, prayers and donations. Everything helps, EVERYTHING!
News on the Bennett-front: B started preschool last week. He cannot get enough of it! He is in the deaf/hard of hearing class and is doing very well. They speak and sign in this class, which is fun for B since he loves sign language (even though he only knows a few words from home). I think his favorite thing about preschool is the bus. Yes, he gets to ride the big yellow school bus to and from school. He literally runs onto the bus, and starts waving and blowing kisses before the door is even closed. The driver and aids asked if they could take him home with them since he's such a sweet boy. It's always nice to hear other people say what we already know: Bennett is the sweetest boy on earth!
Bennett's Big Adventure Benefit
Spaghetti Dinner, Silent Auction & Bake Sale
When: Wednesday, July 7, 2010, 5-7pm
Where: Concordia Lutheran Church (2501 Woodland Ave, Duluth)
Cost: $10 per ticket, or $35 for a family of 4 or more
Friday, June 18, 2010
An unexpected surprise!
This past Monday, B had his CT Scan (with sedation, the little guy wouldn't sit still!). On Wednesday, we received a letter explaining what the scan found. The letter, written in medical-ese, was so confusing I called my friend Jon to help decipher it. Jon is an audiologist and has been a great help to us many times over. I read it to him over the phone...or tried to read it to him...and he confirmed what I had suspected, but was hesitating to really grasp. So Thursday, I called our family doctor. She was not in, so I asked the receptionist to have ANY doctor call us so we can interpret this dang letter. Someone did call that evening, and again confirmed what I had thought. Bennett has an inner ear!!! The anatomy is there, and although some parts are smaller than normal, according to this doctor, it's his opinion it can be "worked with".
Did you get that? B may have a functioning ear!!!
Honestly, I'm still hesitating to believe this news. We've been told from the beginning that he most likely wouldn't have anything there. It is rare, especially since his ear on that side is so small and underdeveloped. But hey, miracles happen! Thank you, God, miracles happen!
I have no idea what our next step is. I have a bunch of phone calls and emails out to our doctors and to the doctors in California. I guess our next step is to take a deep breath and take it one thing at a time, and to accept this wonderful, unexpected news!
Did you get that? B may have a functioning ear!!!
Honestly, I'm still hesitating to believe this news. We've been told from the beginning that he most likely wouldn't have anything there. It is rare, especially since his ear on that side is so small and underdeveloped. But hey, miracles happen! Thank you, God, miracles happen!
I have no idea what our next step is. I have a bunch of phone calls and emails out to our doctors and to the doctors in California. I guess our next step is to take a deep breath and take it one thing at a time, and to accept this wonderful, unexpected news!
Saturday, June 12, 2010
A lot of hard work!
The last few weeks have been a blur! A good blur, but a blur nonetheless. The benefit dinner/silent auction/bake sale is a go, hurray! The event will be held on July 7 from 5-7pm at our church, Concordia Lutheran Church. Thrivent Financial for Lutherans will be matching funds, which is a Godsend and will help tremendously. Many friends and family are coming together to donate their time, auction items and baked goods for an evening of fun. Another exciting donation to report is a HUGE amount of the spaghetti sauce for the dinner will be donated by Chef Dale Beaubien from Restaurant 301, which is located in the Sheraton Hotel in Duluth. We are nervous and excited all at once. I'm sure it will be a huge success!
Next Saturday (June 19) we will be having our garage sale and small bake sale. This was the first of many ideas Nathan and I came up with to raise funds for the California trip. Let's hope it doesn't rain, since the word "garage" in garage sale is misleading...it'll be more like a driveway sale, but that doesn't have the same ring to it. Along with an assortment of items and TONS of baby clothes, I'm hoping to sell some of my world-famous fudge and perhaps some cookies too, depending on how much time I have this week. Wish us luck!
Next Saturday (June 19) we will be having our garage sale and small bake sale. This was the first of many ideas Nathan and I came up with to raise funds for the California trip. Let's hope it doesn't rain, since the word "garage" in garage sale is misleading...it'll be more like a driveway sale, but that doesn't have the same ring to it. Along with an assortment of items and TONS of baby clothes, I'm hoping to sell some of my world-famous fudge and perhaps some cookies too, depending on how much time I have this week. Wish us luck!
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