Monday, July 28, 2008
Whiterock Marathon Board honors Will at Texas Scottish Rite Hospital
Texas Scottish Rite Hospital held a cocktail party reception honoring the 2007 Patient Champions. Will invited us to be his guests for the evening. We were so proud in case you can't tell from the photos! The TSRHC board presented Will with a gorgeous framed momento from the White Rock Marathon Race. The patient champions then presented a check to TSRHC from the funds raised through the White Rock Marathon. It was a very memorable evening!
Friday, July 25, 2008
More Summer Friends
We've had a lot of fun sharing Will with our friends in case you can't tell from all the photos on this blog but here are a few more!
Roxanne Shelton reading to Will........Nell Murdaugh playing
Theresa Cobb trying to keep Will from eating a leaf.... and Sarah Rogers
Katie Ricks playing ball
Emma Ferguson giving a bottle & Great Grammy reading
Roxanne Shelton reading to Will........Nell Murdaugh playing
Theresa Cobb trying to keep Will from eating a leaf.... and Sarah Rogers
Katie Ricks playing ball
Emma Ferguson giving a bottle & Great Grammy reading
Tuesday, July 22, 2008
Brown Family Reunion
Fort Worth was the location for a rather impromptu Brown Family Reunion. We gathered at Tom's Dad & step-mom's home and then attended a dinner at Rivercrest Country Club. Ryan and Laura Brown (Jim & Justy Brown's son & daughter in law),
Reagan, Katie & Will Butts (Tom & Julie Brown's daughter, son-in-law & grandson), Claire Summer (Lois Brown's daughter),
Linda Lucy Peterson (Jim Brown's daughter),
Dan Brown (Jim Brown's son)
and Tom & Julie Brown (Jim Brown's son & daughter-in law) attended.
The next morning we met for more food at La Madeline but Will slept through most of that part of the Reunion!
Monday, July 21, 2008
JULY BIRTHDAY CELEBRATIONS!
We celebrated several birthdays this month - Dorothy Gordon turned 90 in June and in July she and her husband Bubby celebrated their 70th wedding anniversary! How dear they are to us! Will Rogers turned 23...Megan Ricks turned 25...Steven Rogers turned 25...Julie turned 51 ....and Katie turned 28. We celebrated in different ways - first with the Rogers and Gordons:
& then a family style birthday for Julie & Katie (Hayden and Will helped blow out Lovie's candles)
& then a family style birthday for Julie & Katie (Hayden and Will helped blow out Lovie's candles)
Saturday, July 19, 2008
Prosthetics - Step #2
Once again I am copying this straight from Katie & Reagan's blog:
We traveled to Scottish Rite again this week for step two of the prosthetics process - Test Sockets. Using the molds created from Will's legs & feet two weeks ago, his protheticist made plastic test sockets to check to see how they fit on Will. The test sockets can be modified if needed to make sure the fit is perfect prior to making the prosthetics.
She had to screw on the prosthetics to make sure the fit was snug. Will is wearing special socks underneath to prevent rubbing. Unfortunately, one of the down sides to prosthetics is they tend to be extremely hot. People with limb differences tend to have difficulty regulating their body temperatures due to less surface areas to sweat from (for instance when you are hot in bed you can stick one foot out and cool your whole body). I've already noticed Will can get hot very quickly. For this reason, it is not wise to do prosthetics on all 4 limbs at once - it covers up too much surface area. They've warned us that Will will be able to pour sweat out like water from his prosthetics..thank goodness for air conditioning and the fact that Will won't have to use his prosthetics all the time for walking as he will also be able to walk on his own legs.
Trying to keep Will occupied...
Drinking some milk and clapping his feet. He really liked how loudly he could clap his feet and legs with the test sockets on.
Standing up to check the fit. The prosthecist used a marker & special measuring tools to check how sung the fit was. She also poured a powder into the test socket & then tested to see how much of the powder ended up on Will's socks. The goal was to not have all the powder end up on his socks as that would mean too much pressure was being put on his feet bones & there would not be much growing room. I'm not gonna lie to you, our blog readers... it was a hard visit. It was long (2 hrs nearly) & during Will's afternoon nap time. Reagan wasn't with me as he was out of town so that was hard (although my mom went- thanks, Lovie.) Mostly, it was just hard to see part of Will's body covered up. It feels so wrong sometimes to cover him up. We so desperately want to do the right thing & for him to know he is accepted & loved just the way he is. Fortunately, he will be able to take his prosthetics on & off himself. We are so grateful they are not permanent & that we don't have to do any sort of amputation surgery. But it was nonetheless hard to see his little legs & feet encased in plastic. It was one of those days where I just think I can't do this... I just don't know if I can be the mom he needs. I don't know if I have the strength. Oh - I wish someone would hand me instructions for all of this- it was left out of "What to Expect- the First Year."
The final prosthetics will have feet on them by the way... they just don't put those on the test sockets. Not sure how they choose what size foot but I do think shoe shopping will be easy when I won't even have to take Will with me or he can crawl around & play while I fit the prosthesis!
I had a great conversation with Will's prosthecist (Wanda) about some of my concerns & fears. I shared with her about a melt down I had on Monday regarding my fears about sending Will to camp someday & how he would be treated by other kids. Letting go is going to be so difficult on me. I'm prepared (or I will be in 4 yrs) to go to kindergarten with Will & teach his classmates about kids with differences. However, realistically, I doubt I can go teach an entire camp someday. Anyway, I shared all of these fears with Wanda & she told me that Scottish Rite has a summer camp called "Out on a Limb" for kids starting at age 5. They will do all the normal camp activities & often have former patients come to hang out & talk to the kids (& their parents). It is for kids with limb differences. It's a whole week long & I was so excited to learn of this opportunity for Will in 4 years that I cried! Maybe if I sent him to camp first with kids with differences it might be easier for me (& him) to go to a regular camp. He would already know about camp & how to do ride horses & do other camp things. Plus, maybe he could make some friends which is always nice.
So, yesterday, I received a phone call from Wanda in which she told me that she pulled some strings & Will is going to be allowed to go to camp NEXT YEAR!!!! He'll be almost 2 & will get to go to camp (with us of course) for 2 days!!!! How great is that!?!?! Needless to say, I cried... again! I think Wanda knew how much Reagan & I could use the encouragement from other parents & former patients & to see kids with limb differences in action - doing normal camp things! I'm so excited!!! I told Will after his nap & he's excited too!
One of the blessings out of the past year has been to see the depth of grace & kindness people are capable of having. Yes, we've seen the depth of cruelty & prejudice but I must admit that in general, that is overshadowed by people's kindness. We have been blessed by anonymous donors to both Will's trust (to cover some of the expenses not covered by insurance) & to his marathon team. We have been blessed by people who have given him toys & clothes. We've been blessed by friends who have provided meals or cared for Will to give us a break. We have been so very blessed by friends who have called to check on us or made the extra effort to visit us when we've been stuck in hospitals. We've been blessed by you, our blog readers, who have kept up with our journey & often send an encouraging comment or e-mail. We've been blessed to find a state of the art medical facility which provides free care & to find therapists who are so affirming & encouraging. We've been blessed with an accepting family who give so much love to Will & support to us. But the best blessings are perhaps the little, unexpected moments- like when a little kid who has prayed for Will kisses his hands. Or when he smiles & I remember our fears he would never smile. Or when I see a stranger who had previously been staring start to melt & smile & play with Will in public. Or when people hold his hands & tickle his feet. Yesterday was one of those blessing moments. Wanda certainly didn't have to go out of her way to surprise us... but she did. And it means so much to us! Thank you to all of you who have blessed us this year!
We traveled to Scottish Rite again this week for step two of the prosthetics process - Test Sockets. Using the molds created from Will's legs & feet two weeks ago, his protheticist made plastic test sockets to check to see how they fit on Will. The test sockets can be modified if needed to make sure the fit is perfect prior to making the prosthetics.
She had to screw on the prosthetics to make sure the fit was snug. Will is wearing special socks underneath to prevent rubbing. Unfortunately, one of the down sides to prosthetics is they tend to be extremely hot. People with limb differences tend to have difficulty regulating their body temperatures due to less surface areas to sweat from (for instance when you are hot in bed you can stick one foot out and cool your whole body). I've already noticed Will can get hot very quickly. For this reason, it is not wise to do prosthetics on all 4 limbs at once - it covers up too much surface area. They've warned us that Will will be able to pour sweat out like water from his prosthetics..thank goodness for air conditioning and the fact that Will won't have to use his prosthetics all the time for walking as he will also be able to walk on his own legs.
Trying to keep Will occupied...
Drinking some milk and clapping his feet. He really liked how loudly he could clap his feet and legs with the test sockets on.
Standing up to check the fit. The prosthecist used a marker & special measuring tools to check how sung the fit was. She also poured a powder into the test socket & then tested to see how much of the powder ended up on Will's socks. The goal was to not have all the powder end up on his socks as that would mean too much pressure was being put on his feet bones & there would not be much growing room. I'm not gonna lie to you, our blog readers... it was a hard visit. It was long (2 hrs nearly) & during Will's afternoon nap time. Reagan wasn't with me as he was out of town so that was hard (although my mom went- thanks, Lovie.) Mostly, it was just hard to see part of Will's body covered up. It feels so wrong sometimes to cover him up. We so desperately want to do the right thing & for him to know he is accepted & loved just the way he is. Fortunately, he will be able to take his prosthetics on & off himself. We are so grateful they are not permanent & that we don't have to do any sort of amputation surgery. But it was nonetheless hard to see his little legs & feet encased in plastic. It was one of those days where I just think I can't do this... I just don't know if I can be the mom he needs. I don't know if I have the strength. Oh - I wish someone would hand me instructions for all of this- it was left out of "What to Expect- the First Year."
The final prosthetics will have feet on them by the way... they just don't put those on the test sockets. Not sure how they choose what size foot but I do think shoe shopping will be easy when I won't even have to take Will with me or he can crawl around & play while I fit the prosthesis!
I had a great conversation with Will's prosthecist (Wanda) about some of my concerns & fears. I shared with her about a melt down I had on Monday regarding my fears about sending Will to camp someday & how he would be treated by other kids. Letting go is going to be so difficult on me. I'm prepared (or I will be in 4 yrs) to go to kindergarten with Will & teach his classmates about kids with differences. However, realistically, I doubt I can go teach an entire camp someday. Anyway, I shared all of these fears with Wanda & she told me that Scottish Rite has a summer camp called "Out on a Limb" for kids starting at age 5. They will do all the normal camp activities & often have former patients come to hang out & talk to the kids (& their parents). It is for kids with limb differences. It's a whole week long & I was so excited to learn of this opportunity for Will in 4 years that I cried! Maybe if I sent him to camp first with kids with differences it might be easier for me (& him) to go to a regular camp. He would already know about camp & how to do ride horses & do other camp things. Plus, maybe he could make some friends which is always nice.
So, yesterday, I received a phone call from Wanda in which she told me that she pulled some strings & Will is going to be allowed to go to camp NEXT YEAR!!!! He'll be almost 2 & will get to go to camp (with us of course) for 2 days!!!! How great is that!?!?! Needless to say, I cried... again! I think Wanda knew how much Reagan & I could use the encouragement from other parents & former patients & to see kids with limb differences in action - doing normal camp things! I'm so excited!!! I told Will after his nap & he's excited too!
One of the blessings out of the past year has been to see the depth of grace & kindness people are capable of having. Yes, we've seen the depth of cruelty & prejudice but I must admit that in general, that is overshadowed by people's kindness. We have been blessed by anonymous donors to both Will's trust (to cover some of the expenses not covered by insurance) & to his marathon team. We have been blessed by people who have given him toys & clothes. We've been blessed by friends who have provided meals or cared for Will to give us a break. We have been so very blessed by friends who have called to check on us or made the extra effort to visit us when we've been stuck in hospitals. We've been blessed by you, our blog readers, who have kept up with our journey & often send an encouraging comment or e-mail. We've been blessed to find a state of the art medical facility which provides free care & to find therapists who are so affirming & encouraging. We've been blessed with an accepting family who give so much love to Will & support to us. But the best blessings are perhaps the little, unexpected moments- like when a little kid who has prayed for Will kisses his hands. Or when he smiles & I remember our fears he would never smile. Or when I see a stranger who had previously been staring start to melt & smile & play with Will in public. Or when people hold his hands & tickle his feet. Yesterday was one of those blessing moments. Wanda certainly didn't have to go out of her way to surprise us... but she did. And it means so much to us! Thank you to all of you who have blessed us this year!
Friday, July 18, 2008
COUSIN CAMP 2008 !
SATURDAY, JULY 12, 2008
Katie brought her nephew Hayden to Tyler for the week. He is going to go to Pine Cove Day Camp all week. We've always planned to have a "Cousin Camp" one day so this looked like the perfect year to start! The day began with blueberry pancakes ( a first for Will) and butter poured from my grandmother's hen pitcher. YUM !!!
Our first day of camp was called "Exploring Nature" So first we headed to the Famer's Market to see what nature provides Tyler. Hayden learned about shelling black eyed peas and loved learning how to pick out a watermelon.
Then we went to find some wild nature at the zoo! Hayden promptly told us at the first exhibit that he did not like "Longhorn cattle" - I thought it was because they are big and scary looking but Tom reminded me that Hayden is a tried and true "Aggie" descendent. Both of the cousins seemed to really enjoy the bird aviary. It was a hot but happy day which we ended by making cookies of course with Cookie - which will always be an annual cousin camp tradition!
COUSIN CAMP - Splash Day! July 13
This day of camp started out with a surprise - Hayden got his first very own pet (after checking with his mom of course :-) I took him the pet store and he picked out a Beta fish. He was so excited! He chose a bright blue one and promptly named him Swimmy. It is so cute to see how into this fish he is - asking all kinds of questions - like "when should I take him to the vet?" Lovie's answer "well, when he is sleeping on top of the water you ask your mom to take him to Petsmart and they will fix him right up 'just like new'" Lovie's question "when are you going to feed Swimmy every day?" Hayden's answer "when all the people come over" At first I didn't get his answer then I laughed so hard because every day that Hayden had been here at some point every day there was a group of people that just dropped in or we invited over so apparently he thinks this happens every day. One of my favorite comments came on Monday morning when Tom aka Cookie walked in and said "well guys I gotta go to work" and Hayden looked up amazed "You work?!?!" I think all he thinks we do is play and have parties!
Anyway we did have a party this day for Splash Day and invited a bunch of kids over to swim. And every guest was introduced to Swimmy by his proud owner. And Swimmy was a part of the centerpiece along with Will's goldfish which we named "Spot". Unfortunately, Spot did not survive the week of cousin camp....
Anyway we did have a party this day for Splash Day and invited a bunch of kids over to swim. And every guest was introduced to Swimmy by his proud owner. And Swimmy was a part of the centerpiece along with Will's goldfish which we named "Spot". Unfortunately, Spot did not survive the week of cousin camp....
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