Reese's Blog
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FAMILY BLOG - 2 YEARS OLD - JUNE 21, 2007-JUNE 20, 2008 |
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Thursday, May 22, 2008 - 10:45 pm This has been quite a month for us. We’ve had a graduation, an anniversary, a storm tear up our roof, our hot water heater going out in our house, Anita’s school year ending, enrolling Reese in pre-school, the wheelchair issues, and making the final plans for our trip to Walt Disney World. It’s so nice to have that vacation be the last thing on this long list of events for the month. Aunt Dawn, graduated from Cowley County Community College this month. She is quite the over-achiever, and we couldn’t be more proud of her. She graduated from a two year college with 2 degrees and was the Natural Science Student of the Year. She is planning on attending Emporia University in the fall for Nursing school, to be a pediatric nurse. She has always loved taking care of all the baby animals on the farm, and took a very special interest in Reese when he became sick. I believe Children’s Mercy Hospital had a bit of an influence on her and we all wish her the best in her future. Way to go, Dawn! Reese has been enjoying some time with our friend Carey. She came over to watch Reese while Mom and Dad went out for their anniversary. Reese has become quite the story teller. He loves to tell everyone any story about what happened at daycare, what the neighbor kids have been doing, or his latest accomplishment on the potty chair. When Mom and Dad returned from a dinner out alone, Reese had to tell us all about what he and Carey did that night. He talked about going to the park, playing on the swings, going down the slide, and everything. He gets so excited. His eyes are huge and he definitely talks with his hands. Thanks, Carey for the night out. We know you had a good time with Reese. In early May, we have had some minor issues on our house. There was a massive storm that rolled through Kansas City and it really messed up our roof. We had a small leak in the living room, but we are thankful it was not worse. We’re working with insurance to get that fixed. Around the same time, our water heater went out and we had to replace it too. It just wasn’t possible to try and tie that into the storm. :-( Mom pointed out that ice cold showers is one reason she does not like camping. Mom’s school is coming to a close this week. She’s already done with kids, their last day was May 20th. She’s now cleaning up the room for the summer. But the good news is that we had our meeting with the school for Reese’s pre-school next year. Once Reese turns 3 next month, he won’t be able to use the Infant and Toddler program that has been helping him with his therapy. It rolls over to the school district. So Reese will be attending pre-school in the fall at the same school that Mom teaches at. He will only be going Monday through Thursday and he will be in a class with other kids with special needs as well as peer models. There will be a teacher and multiple paras that help out around the class. Reese is very excited about school next year. He will take both his wheel chair and walker to school. He’ll likely use the walker while in the classroom, but if they go to the library, or gym class or anything else in the school, he’ll take his wheelchair. We are currently looking for a place for Reese on Friday mornings and possibly in-service days, so if someone knows of anyone interested, please let us know. Reese has finally received his walker and is doing a great job with it. He can get up in it by himself, and gets around quite well. He loves to use it. We take it outside and he walks around to the back of the house. He goes up and down hills with it, although he’s somewhat of a daredevil with it. If he’s going downhill and he’s going a little faster than he’d like, he just locks his arms, lifts his feet and rides down the hill giggling and smiling all the way. We try and stop that whenever we see it. We tell him, “No tricks!” It’s not exactly safe to go down hills that way, but he doesn’t care. The wheelchair has been an uphill battle though. We still don’t have it and we leave on our trip to Walt Disney World very soon. They informed us this week that it wouldn’t be in before we leave, so the Seating and Mobility office has given us a loaner wheelchair to use on the trip. We picked it up on Monday and Reese really enjoys it. We have been taking it out when we run errands and Reese likes to drive it. It’s a little too big for him, but it’s just a loaner, so it will work great for our trip. It’s kind of a K-State purple color. We are trying to teach Reese that when Mommy or Daddy are driving, his hands go in his lap. We have already had a couple mishaps where Mommy or Daddy are pushing him in the parking lot, and Reese suddenly shouts, “I want to do it,” and reaches down and grabs the wheels. He ends up hurting his hands slightly because the wheels are going too fast for him to grab. Once we get into the store, Reese will then take over and drives it quite well. He’s already doing a great job of navigating, he just can’t commit on a direction that he would like to take. He heads off in one direction, then says, “I don’t want to go there.” He then turns around and tries another direction, only to say, “I don’t want to go there either.” It’s been a learning process for all of us. He’s been doing a great job of going up slight inclines with the wheelchair too. We’re a little nervous about the trip to the parks and to see how Reese does there, but we know we will have so much fun, it won’t matter. Reese has started something new in the past few weeks. He’s started singing. His favorite song is “Twinkle, Twinkle, Little Star.” He sings it very well and we LOVE to hear him sing. He has also started singing “Itsy-Bitsy Spider,” and “Row, Row, Row Your Boat.” We are going to try and get this on video and post it on his site after we get back from out trip. We are in the final planning of our trip to Walt Disney World. Reese is getting very excited. We ask him who he is going to see there, and he quickly spouts off, “Mickey Mouse! Pluto! Chip and Dale! Buzz Lightyear! Woody! Lightning McQueen! Mater! And Pirates!” We ask him what he wants to ride and says, “Dumbo, go up and down!” I think he thinks Dumbo is the only ride, because it’s the only ride he talks about. We asked him about Peter Pan’s Flight, and he said he wants to ride that too. When we ask him what it takes to fly, he replies, “Faith, Trust, and Pixie Ducks!” We try and tell him that it’s Pixie Dust, but he is positive it’s Pixie Ducks, not Dust. If we continue to try and explain, he tells us that if we do it again, we’re going to “Time Out!” We drop it, but we still find it funny. On a serious note, when we return, Reese will be going in to the hospital for his next round of scans. These are the last of the major scans, but unfortunately, it’s ALL of them. We will have 4 days of scans, ranging from CT, MRI, Bone Scans, MIBG, Urinalysis scans, etc. These will be especially hard for all of us, because he is getting older and more aware of what is going on. They will have to put the feeding tube in his nose again to put in the dye because Reese won’t drink it. He will have to not eat or drink for 12 hours prior and considering some of the tests are in the early afternoon, that’s really tough for a 2 year old to understand that he can’t eat or drink. We will have all the results for all of the tests on June 19th, 2 days before Reese turns 3. We will then have a meeting with the spinal defects clinic at the beginning of July. Once all of that is over, we should be done for another 6 months. Please keep Reese in your prayers during the month of June while he goes through these painful and uncomfortable tests. While we don’t have any additional pictures to post right now, I’m sure we will have many to post after our trip. Look forward to a MAJOR update after we return. The
Little Britches Store Sunday, April 13, 2008 - 4:45 pm We are doing well. I think we are all finally healthy! It has been a long cold and flu season at our house! We are staying busy with work, Reese, and appointments. As far as follow-up appointments we are in a holding pattern. Most of those will happen this summer for the 6 month check up. However, we are waiting to hear from the nurse. Have we mentioned lately that we really miss our favorite nurse? Reese is ready for more immunizations but Mom and Dad have not taken him in yet. We have been trying to avoid more exposure to all those germs going around. Now that we are all better we need to look in to that more. Can you believe that it was snowing here yesterday on April 12? It was crazy. Nothing accumulated but to see large flakes coming down in April was odd. Reese thought it was fun. Although, I think he was ready to go sledding and was sad that nothing actually stuck to the ground. The Wheelchair.... Wow, what a story. May we say we are sick of calling companies (manufacturer, insurance, etc) making sure people are doing their jobs. As of Friday, the wheelchair still has not been officially ordered. Even though we were fitted and had Dr. approval in January. Needless to say, we are less than happy. Same with the walker. We found out the same company was ordering it last Friday so we started the process all over again. Boy, how do people stay employed when they are obviously doing nothing? The walker has been ordered as of Friday however, we still don't have ship date on it. I will be calling again on Monday. Thank goodness we have a walker on loan from the Infant and Toddler service that Reese gets therapy from so at least he has one to be using. I can't believe he would have lost 3 months of walking if we did not have this one on loan. He loves to walk with his walker and is getting very good at it. He can almost get up in it by himself. We told him once he can get up in it by himself then he can take it to daycare with him. He is all excited about that! Oh yes, we will decorate the walker because it is very boring. Just silver. Looks like an old person's walker. It needs to be brightened up. We have started brainstorming but have not gotten set on a design yet. Our therapist thinks Reese needs a horn on his walker so he can let people know he is coming. Mom and Dad say no. That would be too much noise! The wheelchair is more kid friendly. We got to choose the color. (bright blue) and the front wheels light up when they move. I am sure we will add to that one too. Reese was dismissed from speech in March. That is quite exciting. Now, he only receives services for physical therapy. We do miss seeing his speech therapist though. She is lots of fun. We are going to plan a play date with her and her girls sometime soon. We have started the process to transition Reese from Infant/Toddler to the school district. Once he turns 3 he has to get everything from the school district. We are looking at sending him to preschool 4 days a week next year. We are waiting to see if he qualifies. Ideally, I would love for him to go to my school. That would make transportation so much easier! We will see how everything works out.
Now for the fun events. Mom had her birthday. Her 3 sisters came up to visit and celebrate. We all went to Gojo’s a Japanese steakhouse and had lots of fun. Reese liked the food after the big fireball was over. Then he was ready to sit in his chair and eat the rice and chicken. After dinner he went with Dad and Aunt Tammie and Aunt Jessie to pick out a happy cake for Mom. Reese said she needed one so we could sing “Happy Cake Day to you.” We enjoyed a small piece of cake because we were all stuffed from dinner. We went to Grandma and Grandpa Z’s for Easter. Reese had a ball coloring the Easter eggs. How many you ask did he color? Seven. No, not seven eggs, seven dozen. And he loved it all. Somehow, Reese managed to get to color everyone’s eggs because we all had more fun watching him than coloring eggs. After he was done, he was very disturbed that Grandma broke them all to make deviled eggs. Although, he did think the bowl of egg shells was pretty. He took his walker with him on this trip and zoomed around the house wherever he wanted to go. The Easter Bunny brought Reese a basket with Mr. Potato Heads that could be dressed up like the Easter Bunny. Reese loves his Potato Heads. He spends hours dressing them up. He also got to go with Grandpa and Daddy out to see the cows. He got to ride in Grandpa’s truck in the field without a car seat. He claims that Grandpa was trying to hit the cows with the truck. We think Grandpa was just trying to get up close so Reese could see them better. The exciting news for us is that we are planning a trip in May. We are taking Reese to Walt Disney World!!!! We are so excited. We wanted to take him before he turns 3 (while he is still free). We have had some friends help us with connections and planning. This is helping to make the trip affordable for us. Reese keeps saying he wants to ride Dumbo and go up and down. He also wants to ride Peter Pan. We of course are more excited than Reese at this point. Lon has a countdown on the computer counting down how many days until we leave. The possible cool coincidence is that Disney is actually buying back the Disney Stores so as of May 1, I will be a Disney Cast Member again! We are hoping this means all the perks that we used to get will still apply. Free admission to the park for me, discount on food, lodging, and souvenirs. How awesome would that be! I did have to change my status to part-time, but if I get the perks it is worth it. It just means I am working more weekends and one night a week. Dad's job is going well. He is Star of the Quarter. Best company employee for the quarter. That is chosen from the entire company about 250 people. Yea Dad! That means he earned a free personal day. Isn't that a great perk? A nice way for the company to honor its employees. At the end of the year he and the other 3 winners that will be named in the next 3 quarters will be nominated for the star of the year. That person receives a free week of vacation. It is great that he now works at a location that actually values the people in there company not just the dollars. Funny coming from a bank. Thank you again for all your support and continued prayers. It is wonderful to see Reese doing so well and continuing to grow with his very happy and enjoyable personality. The
Little Britches Store Saturday, February 23, 2008 - 3:45 pm What a month (or more it has been). We will start with the medical updated first and then move on to the fun stuff. We last posted that Reese had a CT scan in December but we did not have the results back yet. We got those results the day after Christmas. Mom called and was told that there were abnormalities in the kidney and the liver. However, the nurse did not have any more information than that. Well, as a parent of a child who has fought cancer, the word “abnormality” brings up so many things to worry about. Mom had a small melt down before we decided to wait until we learned what this meant. It could be nothing, but it could be the start of a whole new process that Mom was not ready to go through again. The next day we got a call saying we had an appointment on December 31 to meet with Dr. Max, his oncologist. When Mom got the call she asked if this was about the scans. She was told no it was just time for his 6 month check up. We knew after we talked to Dr. Max that we would know more. We learned that she was thinking the liver abnormalities were scar tissue from the chemo. However, she wanted a liver function test to verify it. (That is just a urine test so easy to do. The oncology department just puts cotton balls in Reese’s diaper and then collects them for the urine sample. No need for a catheter. We love that!) The urine test also showed that the AMA and VMA levels are normal! Yea! That means no return of the cancer. Reese’s levels were very elevated when he was diagnosed in 2005. They also did a blood draw at this appointment. It showed that Reese’s counts are in the normal range. Another sign that the cancer did not return. After speaking with the urologist, Dr. Max decided to have an ultrasound of Reese’s kidneys done. Mom and Dad were ok with this since it is not invasive or painful and it would give us more information. The results of that showed that Reese does have a cyst on his kidney, which we knew from previous ultrasounds. It is growing, the doctors think it is growing with Reese. It is not causing any problems and we found out that it is not that uncommon for people to have cysts so we are leaving it alone. It is just something the doctors will keep an eye on. What an emotional roller coaster that process was! All of that was done by the 1st week of January so at least at that point we could relax. Reese’s next check up will be this summer. We are on the 6 month rotation. On a personal note, we would just like to say how much we miss Nurse Better, oops, I mean Nurse Bette. She was the person we could always ask questions and get information from. She was the one person we could always contact. We are having withdrawals and have not found that contact at the hospital to fill that void. Then there are those normal winter illnesses that everyone seems to get around this time. Well, Reese started getting sick one weekend we were staying with his Grandparents for a wedding. There is nothing like a 5AM wake up call to a sick child when you are not at home. Luckily, all our towels for the weekend were in our room so we did some quick thinking. That meant Dad stayed at Grandma and Grandpa’s with Reese while Mom went with everyone else to the wedding. (Thank you to Aunt Debbie for loaning the boys movies so they could just lay around and watch “Reese approved” movies. You know Cars, Jungle Book, you get the picture). He was still not feeling great on Sunday but it was time for us to go home. Mom has learned to travel with ALL of Reese’s medication so she searched the bag and found zofran, an anti-nausea drug from chemo. That would keep his tummy calm for 4 hours, long enough to get us back home. Luckily Reese slept all the way home. Dad stayed home with him Monday morning while Mom went to school. That is when the massive diarrhea started. We are thinking rotavirus has returned. After a few more smelly, massive, messes we know it has returned. We knew we just had to keep him hydrated. He was eating lots of popsicles so we were ok, Mom thought. Although he had already been sick for 2 days so she was watching him closely. She called the nurse and got the list of things to watch for before bringing him in. By 4:00 she called Dad and said we are headed to CMH South, urgent care. Reese would no longer eat popsicles and was not doing well. Dad met us there and we checked in quite quickly. It did not take long for them to decide that he certainly had rotavirus and he needed IV fluids to keep him hydrated. It took quite a while to get the IV in. Mom was ready to ask for the vascular access team. However, they finally got it in and started pumping him full of fluids. Once the IV was in, Mom was sure he would be ok. We were admitted to CMH South, a new location for us to stay at. Mom went home to grab the essentials and Dad and Reese waited for our new room. It was a long night. At 2AM, Reese woke Mom up and he wanted to watch Woody and Buzz. The staff had brought in Toy Story 2 as a distraction. Well, we were in the hospital so all usual rules were out so we watched it. He got to be in a big boy bed this time. That first night he required Mom to sleep in bed next to him. We ended up staying a 2nd night because he still was not drinking enough to maintain his hydration. That night Mom got to sleep in the recliner next to the bed but was awakened in the night by Reese moving the bed up and down saying “ride.” Yes, he had learned where the controls were. Isn’t he brilliant. He still cried everytime someone came in with gloves on, but other than that he did pretty well. We finally go to go home on Wednesday evening. You might be wondering where Dad was during all this. Well, we decided he could go home to get some sleep the first night. He came up early that morning so Mom could shower and then he went to work. Sadly, this was not an urgent thing to us. It was just a “routine hospital stay.” Nothing life threatening, Reese just needed fluids. He was getting them so all was ok. He came back at lunch time to bring Mom lunch. He was not looking so hot then. Mom sent him home. Dad had some 24 hour flu bug. Great timing. He was at home sick, while Reese and Mom camped out at the hospital. He did call in reinforcements. Carey brought Mom more clothes and some food. Thank you Carey! When we came home and Reese still was not doing great by the weekend. We called Aunt Dawn and asked her to come stay with Reese while Mom and Dad went back to work. I don’t know who had a better time, Aunt Dawn or Reese. Thank you Aunt Dawn! That event was finally over and could go back to normal right? Well, not exactly. Mom has had strep throat twice, Reese and Dad have had it once. Of course, you know that this has not happened all at the same time. Just as we think all is well, someone else comes down with it. Mom is hoping that her and Reese don’t get it again now that Dad has it. Mom also has managed to break her toe during all this so she is limping around a bit. Hopefully, that is all the medical drama for a while. We are ready for some warmer weather so we can all get rid of these germs that we are sharing. Between Mom’s kindergarteners and the other kids at Reese’s daycare we have been exposed to it all. Dad claims he is just an innocent bystander but anyone who knows him knows that is NOT true! Reese has also been fitted for a wheelchair and a walker. The wheelchair is blue and has front wheels that light up. Reese was very excited to run into the walls with it and zoom down the hall. Although, it is very sad to see your child in a wheelchair, it does help when he is so excited to be mobile. They say it should take 90 days for it to come in so we are looking at sometime in April. This is for long distances or outings. This will allow Reese more independence than being stuck in a stroller that he cannot control. There are pictures and video from the wheelchair fitting posted. The walker is for moving around at home. The walker is very boring and will need some design help to make it more kid friendly. Although, we are sure that Mom, Dad, Nana, and Papa can come up with something quite spectacular. We will take before and after pictures. Luckily, Reese has a walker on loan for the next month that seems to be exactly like the one we are getting. Thank you to Johnson County Infant and Toddlers (who we receive physical therapy through each week). He has been walking around with it. He is improving his skills. Today, we started working on turning. That still needs lots of work, but he will get there. Ok, I think that covers all the medical stuff. Now, on to the social things. We spent a week during Christmas in the Wichita area. We got to see all Reese’s grandparents, great-grandparents, Mrs. Prince, Hap, the aunts and uncles at the farm, Mia and her new brother, Colby, Katie, and Nate, and Santa stopped by to leave gifts. (Although Reese says Santa did not come because he did not see him). It was great to see everyone and Reese did a great job being drug from place to place to see everyone. He enjoyed sledding and playing in the snow at Grandpa Z’s house. He even made his aunts build a snowman when it was not packing snow. It was a sad looking snowman, but Reese loved it and that is all that mattered. He loved Grandma’s Christmas tree and wanted the lights on anytime he was up. He was so sad when the Christmas trees had to go away. Reese also enjoyed the cows at Grandpa’s house. He would watch them out the window. He went on the tractor to feed the cows with Grandpa and even steered the tractor. If you ask him about it he will tell you the entire story of how he and Grandpa fed the cows. He even decided he was brave enough to pet a cow. However, none of the cows would let him come close enough so he was very upset. There are pictures of these events also posted. In January, we again traveled to Wichita. This time it was to honor Great Grandpa Moser. He was being inducted into the Oil Museum Hall of Fame in El Dorado. He has been surveying oil wells since the 1937. At 90 years old he is still surveying. Wow! Grandpa does not know the meaning of retirement. We got to see all Dad’s Aunts, Uncles, and many of his cousins. Reese was very excited to see Sydney again. They enjoy spending time together. We even took Sydney to the Disney Store for the first time. It was lots of fun. Mom likes picking out things for a girl, once in a while. We loved spending time with Sydney, Deahn, David, Marcene, and Spencer. They came in from Wyoming and Colorado for the celebration. What a fun time. In the midst of one of our trips, our heater decided to not work. We came home and it was 43 degrees in our house. We thought we had fixed it before we left with a new thermostat but we found out that was not the case. We had to get a new motor for the heater. While all was annoying and not really what we wanted to spend a few hundred dollars on, we know it was not too bad. After all, once you have a baby fighting cancer everything else doesn’t matter. Reese had strep throat on Dad’s birthday so that meant staying in to celebrate. We did get a cake and Reese sang “Happy Cake Day” to Daddy. He kept telling us that you get cake on your happy day. It is not a birthday. It is cake day. Very cute. We took video of this so check out the video. When we woke up that morning Reese started listing off all of Dad’s gifts. Mom had told him that he could not tell Dad until tomorrow because that was his birthday. He waited until his birthday but he did not get the concept of not telling what was in the presents. Mom’s birthday is next month we will see what he does then. Some of our friends and family think we are avoiding them. That is not the case. We are just trying to keep up with the everyday actions right now. We are aiming for all being well at the same time, which hasn’t happened since about Christmas. Then we can socialize again. We hope all is going well with everyone and we hope to rejoin the rest of the well, functioning people soon. We continue to thank you for your support and prayers. Reese still has a lot of work to be able to walk. We pray that all continues to go well and that he will be able to walk soon. We hope this satisfies Lonnie’s need for news. We love talking to her but don’t want her to have to make another international call to ask why we are not posting any new information. We love you and miss you, Lonnie. 32 new photos same from last update (in case you hadn't seen them, you now have the stories to go along with the photos). 11 new videos two new ones since last update. The "Waiting for Lightning" shows how expressive Reese is. The
Little Britches Store Monday, February 11, 2008 - 12:20 am It's really sad that it has taken us so long to update Reese's site. We got a call this weekend and in that call we received our first "international request" (and yes, I'm cleaning it up a bit) to update our site. Our friends in Norway told us they needed to know what was going on with Reese. We promised we would update everything this weekend. Well, as you can see, it's early Monday morning, and I didn't get everything updated in time. I will update more tomorrow, including an appropriate blog, but for now, I am only able to provide 9 new videos, and 32 new photos! It just takes a lot longer than planned. Anyway, please be patient, and I'll update more tomorrow. The
Little Britches Store Sunday, December 23, 2007 - 10:20 am As you can tell, Reese was Mickey Mouse for Halloween. He loved being Mickey. He even wanted to sleep in his costume. He loved Mickey’s hands. Mom and Dad came as Mouseketeers along with Reese. We went trick or treating at Mom and Dad’s work and a few neighbors on the street. Then we sat on our step and passed out candy. Reese liked putting the candy in the buckets. For almost a week after Halloween, he would take the candy out and put it back in the bucket. This would entertain him for hours. He knows the M&M bags so he was always trying to get into those. It was not until later that he learned there was chocolate in other wrappers. Then we had to start rationing the candy. Reese went to Pump It Up for the first time. We celebrated Malik’s 5th birthday. Reese had a great time in all the blow up things. I think the adults had fun taking him through the obstacle courses too. In November, Mom and Dad went to a wedding in Emporia. Reese was not invited so we left him with the neighbors. They have 3 kids and Reese loves to play with them. Mom was very nervous about being an hour and a half away from Reese. The only other time she has been away from him, Dad was with him. Mom did ok, she only called once. Reese of course had a wonderful time and did not really miss us. We did enjoy seeing some of our Disney friends. It is funny how so many of the Wichita cast has moved many different places. It was great to see some of them again. Grandpa and Grandma Z, Aunt Dawn, Aunt Tammie, Aunt Jessie, and Uncle Carl came up for Thanksgiving. Reese was so excited they were here. He kept saying, “Grandpa Reese.” Then he would go through everyone else’s name. He was so happy to see them. It was nice that they came to see Reese at his house. Reese loves the decorations the neighbors have in their yard for Christmas. They have an inflatable snowman, polar bear, penguin, and Santa. Reese loves to look out the window and say, “Snowman up, Bear up, Penguin up, Santa up.” If they are down he goes through them all and says night, night. This happens multiple times a day. Since he loves to talk about these we have added colors to them to expand his speech. He now says “Larry’s white snowman.” Etc. It goes on forever. He loves to tell these stories. He loves the decorations at Christmas. He loves the tree and the lights. He always wants “Reese’s tree lights on.” His speech is really coming along. It is fun to see Christmas through his eyes. Lon’s company Christmas party was at Tan-Tar-A at Lake of the Ozarks. Aunt Dawn went with us to baby sit Reese in the room while Mom and Dad were at the party. We got to spend some time in the pool. Reese loved it. He also loved having Aunt Dawn here to visit. He was sad when she left. We attended the oncology Christmas party this year. Reese had fun as usual. Santa brought him a remote control Mater. He thinks it is quite fun! We have already gone through 4 sets of batteries! Reese is doing well. Now it is time for the medical update. We went to the spinal defects clinic in early December. He was casted for some ankle splints. This will help strengthen his ankles and help him step correctly on his foot. We are also scheduled to be fitted for a walker. Reese has been practicing with one during physical therapy. There has been another family who has let us borrow their walker. Thank you! I am sure we will post pictures and video of this soon. We are also being fitted for a wheelchair. This will allow Reese to go longer distances. We set him in one at the clinic and off he went. No one told him what to do, he just went. Quite exciting. We will keep you updated on this. Reese also had a CT scan on the 19th. We have not gotten the results back yet. It will probably be after Christmas before we find out. Reese did very well, but it is hard since he is older now and knows what is going on. He hated the feeding tube and held on to Mom tight while they put in an IV. They did numb him first so it was more that he was being pinned down. He was certainly ready to leave the hospital! We did get some time to play with the fun things at the hospital. We watched a train and changed the colors of the night sky in the rotunda. We also dropped holiday treats off to the clinic, Dr. Max, and 4 Henson staff. It was nice to stop by and say hi to people who are such an important part of Reese’s life. It has been nice that Dad has been able to attend these appointments with us. It helps him see more of what happens. It also relieves some of the stress from Mom, being the only person there. It is such a blessing that he works for a company that values family and allows their employees to attend such important appointments without taking away his vacation time. We were supposed to go to Wichita on Saturday. However, weather kept us at home another night. There were blizzard conditions in Wichita so we stayed home another night. This gave us time to work on Christmas cards. Look at us go. We wish everyone a very Merry Christmas and Happy New Year. We encourage you to brighten the day of others by giving to those in need, rather it be someone you know who needs a little boost or an organization who helps others. (Of course we have our favorites, those who have helped Reese in his battle of neuroblastoma and its effects). We encourage you to share in the holiday spirit. We know how much it lifted our spirits when we needed it.! Mom & Dad
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Little Britches Store - NEW ITEMS HAVE BEEN ADDED!!! 2008 Reese Calendar!!! 2007 Christmas Ornaments!!! All other items have been updated! Thursday, November 15, 2007 - 11:15 pm We need to write a longer Blog, but for now we wanted to update the photos page. You can now see what Reese was for Halloween! We'll update the blog shortly. Mom & Dad The
Little Britches Store Friday, October 26, 2007 - 12:01 am Wow, how could it have been this long since we posted it. What craziness. Sorry, all is going well. Here is the update. I will break it down by month. (scary that it has been that long)! August September We also got to visit with cousins. We met David, Deahn, and Sydney in Nebraska. We are scattered in Kansas, Colorado, and Wyoming so we picked someplace in the middle so no one would have to drive that long distance. We found a hotel with an indoor pool and spent the weekend. Sydney, who is 4, and Reese had a great time in the pool. They loved it. Reese got to have some more therapy in the pool, which he loved. We celebrated Christmas. Reese got some great gifts and some things that Sydney had outgrown. He loves the Lightning Car that he can ride and Mom and Dad can push. It is also great therapy for him. He also loves the Little People Zoo that Sydney brought. We have been learning animals and animal sounds. Reese loves to show off his animal sounds. It was great to see them. We had a great time! October Reese has started taking steps! This is very exciting! He cannot stand on his own. He has to be holding our hands or on to something, but his legs are certainly doing the moving of walking. He takes big steps. He is so proud. He even asks us to “walk.” That means to grab his hands and help him walk. We are so excited to see his progress. He is also getting much better at climbing up and down the stairs. He is quite fast at going down. Mom and Dad have to move out of his way! Reese lays on his stomach with his feet going down first and just slides all the way down. We had our 6 month evaluations with physical therapy and speech. On paper, Reese has not progressed very far physically. He is still considered in the 10-12 month range of mobility. This is because he is still not walking or crawling. However, to see the strength and skills that he has earned in the last 6 months is definitely an improvement. As far as speech, Reese should be saying short sentences now. The only sentence he currently says is “I want that.” He will label everything he sees that he knows. Watching a movie with Reese is quite exciting. It is narration of all the items that he knows. He is beginning to put 2 words together but we are not getting 3 together. He is moving along in speech but just not quite there yet. He is making progress there too. Right now we are leaving our therapy schedule the same., physical therapy every week and speech every other week. Reese had a second round of immunizations in the beginning of October including his flu shot. We have one more set to do in a few months and then he will be caught up. Mom decided last weekend that she would start introducing Reese to the potty chair. She brought in books he could read while sitting on the potty chair. Reese seemed to do pretty well that first night, just sitting. Nothing happened, The next day while Mom was in the shower, he told Dad “Potty, Chair” and pointed to his diaper. Dad took him in the bathroom and he went in the potty chair like a big boy! We were so excited. He has done this 3 more times! We are quite impressed that after showing him once he is catching on. We still have a long ways to go but we are quite excited. Especially, since we were told that he may never be able to be potty trained. The doctors predicted that he had the possibility of not controlling his bowel and bladder movements, and would most likely be in a diaper his whole life. It is looking like this is another way that Reese is not doing what the doctors expected. We will continue to pray for little miracles like these. Reese is currently fighting a cold, but that is just a normal childhood thing. Mom and Dad are not worried. We just want him to feel better. We have his costume all ready for Halloween. I won’t give the costume away, but it is a Disney costume. I know, no one is shocked. Mom did learn that another little boy named Gabe is fighting neuroblastoma. He just turned 3. His Mom works for the Olathe School District too. Please keep this family in your prayers as we know how much they are needed as they fight this horrible disease. We thank you for your continued prayers for Reese. He still has many things to overcome to be a “normal” kid, but he is cancer free and that is HUGE! We love every day with our very special little boy!We have also added 10 new photos from the month of July 2007. We hope you enjoy them. Mom & Dad AND YES, 5 NEW VIDEOS!!! (If you haven't seen Reese's Hot Dog Dance, you owe it to yourself to download those videos.) The
Little Britches Store Tuesday, August 7, 2007 - 10:30 pm Life with appointments has slowed down in the last month. What a wonderful thing. We have only been to the doctor twice this month! We had an appointment with the developmental pediatrician at the end of July. She was concerned that Reese’s speech is delayed. She was expressing how important it was to stay on top of this and get him weekly speech therapy. At the end of the appointment she showed me where Reese fell on the guidelines with speech he fell at 23.1 months. He is only 25 months old. I guess I just don’t consider that severely delayed. Perhaps, I am looking at what he has been through and think it is impressive that he is doing that well. Of course we will continue bi-weekly speech therapy, but I am not going to stress about it. He is still delayed in gross motor skills too. That is not surprising since he is still not crawling or walking. He is gaining strength everyday! As far as visual problem solving skills he is right where he needs to be. I think he may even be a little ahead. I know he can do things that he would not show the doctor, like stacking blocks. Overall, this was a great appointment. We will see this doctor again in a year. The check ups are spacing out a little more! We also had a check up with our pediatrician. It was different to go to a normal doctor’s office that is not located in Children’s Mercy. We love this doctor so it is ok, just a different location. This appointment was to start Reese’s immunizations. He received 4 shots. These are the shots that healthy babies receive at 2 months. Reese did pretty well. He started screaming as soon as we laid him down on the table, but seemed relieved that it was only shots. He was so concerned that he was getting a feeding tube up his nose. He held his hands over his nose and shook his head “no” over and over before the shots. But once the shots were over, he stopped crying and was smiling again. He was a little more clingy the next two days but otherwise went fine. Another “normal” thing for Reese to do, get shots. Reese has loved the summer. He loves spending time in the pool, outside with the neighbors, and being with Mom all day. The therapy is helping. He is making progress. He loves to stand and play with his toys at the train table. He can stand there for about an hour and a half. We are very impressed with his improvements. The therapists that work with Reese both say that he is a very hard worker, unlike most kids his age. Reese has been doing very well with his therapy. One of the funny things he has started doing is counting in Speech Therapy. It's not funny that he is counting, but HOW he is counting. The therapist keeps trying to get him to say, "One, two, three, four, . . . " Instead, Reese counts like, "One, another one, another one, another one, . . . " You can't say he's doing it incorrectly. Reese has just found (much like everything he has done) his own unique way of doing anything. He has since picked up on the "One, two, three, four, . . ." He has also started saying, "Please" when he wants something. It's very cute. This past weekend we traveled to Wichita. We got to see many people, even though it was just for brief times. We got to see Grandpa D and Grandma Patty, Great Grandpa D, Nana, Papa, Mia, Great Grandpa M, Great Aunt Marcene, Grandma and Grandpa Z, Aunt Dawn, Aunt Tammie, and Aunt Jessie. We went down to see Marcene who was visiting from Wyoming. It was great to see her. It had been a year since we saw her last. She and Reese had a great time playing together. Aunt Dawn cut off her hair and donated it to Locks of Love! I can’t believe we did not take a picture of her new do! While visiting in Wichita, dad threw his back out trying to get Reese out of the car seat. A wonderful friend made a house call and brought the needed items to get him moving again. Thank God for our friends in the medical field! Mom got to play nurse again, this time for Dad, instead of Reese. Reese was sad that Dad would not pick him up. He did not understand why. Dad is feeling a little better but still very sore. Mom goes back to school tomorrow. I can’t believe the summer is already over. It went by so fast. We did not take a vacation or have elaborate plans. It was just tutoring, going to appointments and doing therapy. Wow, it went by fast. Although, I am looking forward to getting back to the classroom, I find myself already looking for my next full day to spend with Reese. Daycare will be an adjustment again for both of us. Thank you for all your continued prayers and support. Reese is working hard to overcome his challenges. Some days are easy and some days are hard for Mom and Dad as they watch him grow and change. There is excitement in how far he has come and sadness when comparing him to other kids his age who can do so much more. We know the future holds great things for him so we just take it day by day. On a fun note, Thursday, August 9 is Miracle Treat day at Dairy Queen. All proceeds from blizzards sold that day go to the Children’s Miracle Network. In the Kansas City area Children’s Mercy and KU Med are CMN hospitals. You can help other kids like Reese and enjoy a frozen treat on such a hot day. We have also added 10 new photos from the month of July 2007. We hope you enjoy them. Mom & Dad The
Little Britches Store Thursday, June 28, 2007 - 11:30 pm REESE HAS BEEN DE-PORTED!!! Well, we mean Reese's port has been removed. Reese did a great job all morning and didn't ask for food at all once we got to the hospital. But, as soon as we walked into the Sedation room, Reese immediately started screaming. This is the same room that has been used whenever Reese had to get a feeding tube put up his nose. He does not like that procedure at all. He was afraid that was why he was in the hospital. All they did was access his port and take some blood for tests before the surgery. Reese screamed through that whole process. Then when they were done, mom held him for a while and got him calmed down for a short time. Then the nurses came over to remove some tape from Reese's arm. Reese immediately covered his nose with his hands and started screaming again and shaking his head "no!" He was just so sure that he was getting a feeding tube today. After that, Reese calmed down and actually fell asleep for a while. This helped pass the time since he didn't realize he was hungry. When it came time for Reese to go into surgery, Dad held him in the surgery room. He was screaming again and scared. He was signing "All Done" over and over trying to get Dad to take him out of there. The nurses hooked him up to the medicine to sedate him, they told Reese to tell Daddy "good night." Within about 1 second, Reese went from screaming and waving his arms to rag doll and dead asleep. Reese did great during the surgery. He came out fast and Mom and Dad went to pick him up to take him home. He was still a little groggy and crying, but was much more alert than the last time he was sedated. He cried all the way home, and wanted Mom to hold him in the car. I'm not sure if it was that he just wanted to be held, or if the car seat straps hurt his chest where he had the surgery. But once we pulled into the garage, Reese looked up at Mom and said, "Out." He was ready for Mom to get him out of that car seat. Reese's chest is all bandaged up. He has those stitches that disolve, so we won't have to have them taken out. He can't have a bath for 3 days, and he can't get in the pool for 2 weeks. We had just started water therapy last week, so we will have to put that off for a while. Reese loves water therapy and has already looked out the window today, at the pool and asked to go in. He did play for a while when we got home from the hospital. Then he slept for a couple hours. Hopefully, he will sleep through the night, but we will have to wait and see. Thank you for all the prayers from everyone. If you haven't looked at all the new photos that were added yesterday, be sure and check them out. Thanks again. Mom & Dad 37 PHOTOS FROM HIS 2ND BIRTHDAY PARTY!!! The
Little Britches Store Wednesday, June 27, 2007 - 1:00 am Reese is now 2 years old! It's hard to believe. In some ways it seems to have gone by so fast. In other ways, it's been a long 2 years. Reese had his big 2nd birthday party on Saturday, June 16th. It was in our back yard again, but instead of raining like last year, it was the hottest day of the year so far. The theme was Disney Cars. Reese has been so infatuated with the movie Cars, that it just seemed too easy to use that as the theme. Reese loved his party and had a great time with everyone there. Mom and Dad have been working with Reese for the past couple months at blowing out his candles. He was doing so great at it. But when the time came during the party, Reese was a little shy and didn't want to do it. He just looked at the candles and grinned. Later that week, on his birthday, Reese was greated by Lonnie and Nicholas from Wichita. They are getting ready to move to Norway later this week, so they stopped by for one last visit. They met Dad at work for lunch. We already miss them greatly. That night we went out for Reese's birthday to Rainforest Cafe. We sat close to the monkey and apes and it was a good thing because Reese loved watching them come to life. He especially liked the one that was swinging. He would point at that one and then sign and say, "Swing" over and over. For some reason, when the elephants came to life (mind you, they couldn't have been further from our table), Reese would panic. He acted like they were coming over to trample us. Everything else at Rainforest was great. When the waiters brought his birthday dessert, there was a candle lit on top of it. While the waiters got ready to sing to Reese, Reese leaned over the candle and blew it out. He was too shy to do that at his birthday party, but didn't even have to be asked to do it this night. He just blew it out like that was what you were supposed to do when a lit candle is placed in front of you. The following weekend, we traveled down to Belle Plaine for a wedding. It was also harvest time for Anita's family, so Reese wanted to ride on the big combine with Grandpa. Reese enjoyed it and was even trying to say the word, combine. It kind of came out like bom-bine. As you may have noticed above, Reese's prayer level has jumped up quite a bit. This is because on Thursday, June 28th, Reese will return to Children's Mercy Hospital for surgery. The doctors are removing Reese's port in his chest. This was the device under Reese's skin that was used to access his veins and to give him his chemo. This is a good surgery because it means that they don't feel he needs it anymore. So we are very excited that it is being removed. But it is still a surgery, so we ask that you pray for Reese. The bad thing is the his surgery isn't until 1:00 in the afternoon, and Reese will not be able to have breakfast or lunch before the surgery. Trying to explain to a 2 year old that is hungry that he can't eat will not likely go over well, but it will just be for one day. We've been through worse things. We will update the website Thursday night with a brief update explaining how the surgery went. We have also added some new photos to the photo page. Most are from his party. Enjoy. Mom & Dad The
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