History

Journal History

Sunday, March 30, 2008 7:40 PM CDT

Where oh where does the time go?! Looks like I've been remiss in updating once again so I will try to do so without making this too terribly long.

Kyle has had a lot of seizures since my last report. February 1st he had an episode of prolonged seizures and Nikki, his nurse, felt we should get him to the ER. We called for an ambulance and took him in. I will spare you a tirade about being put on hold when calling 911, and will hold off on sharing my thoughts on paramedics who decide text messaging is appropriate when transporting a patient. I will even wait until another time to rant about people who refuse to yield to emergency vehicles and even go so far as to shake their heads in a defiant NO when being motioned to pull over by the paramedic. All topics for another day. But I do want to say thank you to everyone who respectfully pulls over. It is an inexplicable feeling to be riding in front of an ambulance with the driver and see people making way so you can get your child to the hospital. You want to somehow thank them all. Maybe they realize the person in the back of an ambulance is someone's loved one - and it could one day be their own. Maybe they just do it because it's the right thing. I have always yielded to emergency vehicles but I see it so differently, with such gratitude, having been in that front seat so many times with Kyle. So thank you.

We got to the hospital, Kyle's temp was normal, seizures had stopped and vitals were not great but okay. They took him to radiology thinking he may have aspirated again, drew blood, and his temp suddenly shot up to almost 104. They came back to the triage room to announce he had tested positive for the flu! We are diligent about getting flu shots each year - the flu can be devastating for people with mito - and I was absolutely shocked. Flu levels in Knoxville were low, no one in his class had come down with it, and the doctors at the hospital said they were just beginning to see a few cases, but all from outlying counties. No idea where he got it but he did. Kyle was admitted for 4 days and stayed home for almost 2 more weeks after he was discharged.

We've also spent some time having cardiology studies done since my last update. Nikki had noted several days that Kyle's heart rate was lower than normal for him. Although it wasn't dangerously low, it was off for him and his wonderful pediatrician doesn't ignore anything with Kyle. He ordered some tests and we scheduled an appointment with the cardiologist. Everything turned out to be fine and we even found out an earlier potential problem they'd been keeping an eye on has resolved - great news!

We've been juggling meds again trying to deal with the seizures. An increase in one made his seizures less severe but increased the frequency (basically to every day as opposed to once every 3 or 4 days) - that didn't work! After much discussion in terms of frequency vs. severity we decided to drop back to the previous dose and will decide about other changes when we see the neurologist for his next checkup.

Kyle had a cold over spring break and Nikki was away on a mission trip so he and Andy kicked back and relaxed most of the week. Tuesday is Special Olympics, weather permitting, and I am going to do my best to take the day off!

Now, in closing, I will tell you another "Kyle-ism" so those of you who don't know him personally can get another glimpse of his precious personality! Kyle has always had little treasures and you just never know what he will "bond" with (as we describe it!). A stuffed animal, a toy tractor or truck, a feather duster, my shoes, some item in the grocery cart (a roast once when he was little and I almost felt guilty cooking it!). He bonds with all kinds of things! All fine until bedtime....that's when you discover the items of the day, all shoved under the covers!! And he truly does SHOVE them under! When you crawl in to cuddle up with him more often than not you are going to have to remove football helmets, golf clubs, 6 or 7 stuffed animals, cowboy gear, and perhaps even one of our dogs, before you can even get in!

Well, I am off to see what he has bonded with tonight! Thanks for being so faithful in thinking of us. Happy spring!

Much love,

Claudia

Wednesday, January 2, 2008 2:49 PM CST

Happy New Year!

I can't imagine another year has passed. And, as usual, I can't imagine it's been so long since I updated Kyle's site. I have made a resolution to do better this year!

We had a busy year! Kyle had several hospitalizations last year, mostly due to respiratory complications following his seizures. He spent a few days in ICU on separate occasions but came away each time doing okay. He had seizures yesterday and again this morning.....I am praying for several good days in a row now. He is out of school until next week and I am taking this week off to just relax (HA!) and spend some time with him. He really does not care a lot about events and holidays (except his birthday!) but I am determined he will celebrate them all so we had a nice Thanksgiving and all the hoopla of Christmas. The decorations are down and put away and a stack of Kyle's gifts remain unopened. He will open them when he is ready! This has become an annual thing and he will pick one up one day and announce he's ready to open it. And will continue to open them randomly until they are all eventually opened. I've learned to be certain he opens gifts from other people on Christmas so we only leave some from us to be opened throughout the year. If you think about it, it's actually a wonderful thing - Christmas lasting all year long!

It's hard to believe he is 20! I took Kyle's birthday off and Kyle, Andy and I went bowling and out for dinner. Kyle had a great time bowling - the only challenging part was getting him to let Andy and me have a turn! It was a fun day! School started back soon after his birthday. Kyle's in the same class this year and I am so thankful for his wonderful teacher, classroom nurse and the assistants in his class. He's quite spoiled which is fine because I know he is well loved! He participated in Special Olympics again this fall and won a medal in the softball toss event! We are quite proud of his medals!

Andy and Kyle really decked out for Halloween (see the new pictures I added)! They went trick or treating at Andy's family's then came back here to give out candy. My Dad came for an overnight visit before Christmas and Kyle always adores seeing Pop - it was just too short a visit!

I had a busy year also. I traveled to Tulsa for several days to see Dad and Jane, and my sister Sandy and her family. It was a great visit and I hope to get back there this year. I attended a conference in Canada at the University of Guelph in late October and saw Niagra Falls for the first time. It's always so difficult for me to leave Kyle but both times everything worked out for me to be gone......and he did great while I was away.

2007 also had some sad times. My precious cousin, Jane, passed away in October. We were all so close growing up and I have many, many fond memories of times spent with my sister, Jane, and her sister Carole. My whole family growing up was so close. I was able to get home to West Tennessee for her funeral, and although I hated the circumstances that took me there I am thankful for the time I had to spend with family and old friends. We don't get together often enough and I miss them.

Thanks also to all of you who took some time to visit my friend, Anne's, website, when her son, Zach, passed away in November. I know the messages, thoughts and prayers are appreciated. Please continue to hold Anne, Lou, Brittany and Abby close in thought and prayer.

I am so deeply grateful for all of you. You can never know what your calls, emails, thoughts and prayers mean to us. Do check back because I AM going to update more often! I have learned so much from Anne, one thing being the importance of writing this journal so that the essence of who Kyle is shines through. So often I only write here when he's going through a difficult time, as a way of updating everyone. Anne has a beautiful gift for writing about her boys so you feel as if you know them. This year I plan to write more about funny, witty, happy, precious Kyle and although I don't share Anne's gift for writing, I do want you to know who Kyle is! I will start today by telling you he LOVES to sing and I can't think of a day going by that he's not belting out one song or another. BUT he pretty much enjoys singing solo and if you decide to join in, especially when you've not been cued, you might very well find his little hand placed over your mouth if you are within his reach! (Ever so politely, mind you!). If he can't get to you, he most likely will just cover his ears!

More to come.........and don't forget to click on the photos section because I have finally added new ones!!

Much love,
Claudia

Thursday, November 29, 2007 10:31 AM CST

Hi everyone,

I emailed many of you already but I want to post the email here for those I missed. I will post a long overdue update on Kyle in the next several days.

My friend Anne lost her second child to mitochondrial disease on Tuesday. Zach was 15 - her son, Sam, died in March of 2005 at the age of 7. Anne is an amazing woman who has opened her heart to so many parents and her boys will forever live in the hearts of multitudes of people who never met them in person. Anne's given us the gift of knowing them by sharing them with us in her beautiful journal entries. She lives her life with such grace and pure gratitude for the honor of being their mom, and she has dealt with their medical challenges with incredible courage, strength, love and commitment. Anne has been an inspiration to parents, grandparents, her community, doctors, nurses - everyone who knows her.

There are large email groups of families living with mitochondrial disease who "know" each other over the internet and out of those connections a small group of us moms became especially close. We are spread out all over the world - all corners of the U.S., Australia, Isreal. We have tried over the years to get together occasionally at Mito Conferences and other places when we can - not an easy task with children who have special needs. Anne was the first of our group I actually met in person and I loved her instantly in person just as much as I had over email.

I would ask you to say a special prayer or hold a special thought in your heart for Anne, and for her family - husband Lou and daughters Brittany and Abby. My heart is breaking for her and I know she will appreciate the thoughts and prayers. We all do.

I am including the link to Anne's website for Zach and Sam (below). If you have time, read back over some of her journal history. I know you would be so touched - and blessed - by reading her posts. She has a beautiful gift for sharing her precious children so that one sees beyond any medical diagnosis to the valued persons all our children are. She has a special way of expressing the deep emotion so many of us parents with special needs children cannot find a way to share or sometimes even dare to speak about. You will be inspired and moved by the love of this amazing mom and the story of her beautful children. And if you feel inclined, post a note in her guestbook - you are welcome to say you are my family or friend if you'd like. I feel certain it will mean so much to her just to know people are thinking of them.

Thanks so much..........you have all been so faithful to hold Kyle and me in your thoughts and prayers and I am so very thankful to have friends and family like you.

With love,
Claudia

Zach & Sam's website: http://www.caringbridge.org/wi/zachsam/index.htm

Tuesday, July 31, 2007 8:51 AM CDT

HAPPY 20TH BIRTHDAY KYLE!!!

Monday, May 21, 2007 12:25 AM CDT

Kyle was admitted to Children's Hospital last Friday morning with aspiration pneumonia and hypoxia. He had 5 very bad seizures Wednesday night and apparently aspirated at that time. Friday night his temp went up to 104.6 and the nurse discovered she didn't have orders to give him anything for fever. She reached the doctor on call and was able to get orders so thankfully we got the temp down. I happened to ask if they had a seizure protocal and orders for meds for status (seizures that won't stop) and those had not been written either. But we made it through the hospitalization without seizures and with no additional high fever. Kyle's been most uncomfortable and needed IV antibiotics, breathing treatments and fluids. He was finally able to come home today on oral antibiotics and we will continue the breathing treatments here.

It's great to be back home! I am thankful we have such wonderful doctors and great hospital care but it's always so nice to be discharged and home where he can get some rest and recover.

I thought I had updated his website on Saturday when I was home but obviously the journal entry wasn't saved. Sorry! Thanks to all of you who knew Kyle was in the hospital and called or emailed. I will update soon!

Love,
Claudia

Sunday, April 22, 2007 10:05 AM CDT

Happy Spring!!!

What a beautiful time of year in East Tennessee! I would be hard pressed to pick which season here is my favorite but at the moment I am reveling in the sense of renewal this one brings.

Kyle is doing pretty well. He is still having seizures but as always, he is taking it in stride. He embraces each day with smiles, laughter, and usually a song or two - or three! What lessons he has taught me in tenacity, courage, love. I am so honored and so very blessed to be his Mom!

We are looking forward to a visit from Nanny in May! Our niece, Jenn, is completing her freshman year at the University of Tennessee and has decided to spend the summer here instead of going back to CA. She's planning to stay here with us so Kyle and I are looking forward to having her! Her sister, Michelle, is coming in June to spend a week at the UT College of Veterinary Medicine (where I work) to participate in a program for high school students interested in Vet School and we can't wait to have her here also! I am also hoping to get to Tulsa for my niece, Brooklyn's, graduation and the opportunity for a long past-due visit with family.

Thank you for holding Kyle close in thought and prayer. We are so grateful for the many, many people who have touched our lives, many of whom we'd never have known had it not been for Kyle. I have met so many amazing, wonderful mothers - and dads - of children with special medical needs and hold all of them in such high regard. The challenges they face are endless but the rewards are great. Please keep them all in your thoughts and say a special prayer for them and their children too.

Much love,

Claudia

Sunday, April 22, 2007 10:05 AM CDT

Thursday, January 25, 2007 4:03 PM CST

Greetings from chilly East Tennessee!

Just wanted to give everyone a quick update. Kyle's had some pretty frequent and difficult seizures lately. We took him by ambulance to the ER room last week when his seizures wouldn't stop despite intervention with medication. It is not unusual for him to have prolonged seizure activity but that day he wasn't as responsive as he usually is and his nurse was concerned with his respirations so we took him in. The ER doctor was very nice and suggested some medication adjustments (for the most part, the doctors we see in ER respond to the emergency but rarely suggest treatment options). He contacted Kyle's pediatrician and his neurologist who both agreed so we have made the adjustments and it seems Kyle has had a better week! He is home with seizures today but they came and went without complication.

Over the holidays he was very lethargic and sluggish - he didn't want to eat, didn't want to get out of bed, didn't want to do much of anything. In the world of mitochondrial disease this is something we watch very closely for. Things that most of us could take in stride can become devastating to a person with mitochondrial disease. And the situation can change for them very rapidly. As one of my dear mito mom friends describes it, when a person who has mitochondrial disease, with a system that is already compromised, any additional decrease in the cells ability to produce energy can result in a mitochondrial crisis. So changes are important and you basically go through a process of elimination to rule out other causes. And if nothing else turns up to account for the changes you sit and wait. Not something I am very good at! But there's not much else you can do but to let him rest, minimize the demands on his body for energy production, and wait. The hope is always that the crisis passes without any regression. And while we are waiting on multiple lab results to come back, it appears Kyle is bouncing back and feeling more active!

Thank you all for keeping Kyle in your thoughts and prayers!

Love,
Claudia

Sunday, December 17, 2006 7:58 PM CST

Happy Holidays!

What a wonderful time of the year! As usual I am down to the wire getting all the seasonal things done but the tree is up, some of the gifts have been bought and a few have actually been wrapped!

We are doing well despite continued seizures, which have been more frequent lately. Kyle has also been quite lethargic recently. We had lots of labwork run but results were unremarkable so we made a few adjustments in some of his supplements and will see if that helps. He already seems a bit more energetic. He is scheduled to see his neurologist in early February so we will see what adjustments, if any, he suggests.

We have had a nice, busy, LONG autumn...we are still having some warm days - it's been in the 70's this weekend! East Tennessee is such a beautiful part of the country, especially in the fall. I had a great time attending a Halloween event sponsored by our home health agency with Kyle and his nurse, Nikki, and many of the other clients and their caregivers. The company had a fun pizza party with awesome spider cookies and all kinds of scary treats and lots of people in full Halloween attire. After the lunch party we all took off for a local farm where we were scheduled to go through the corn maze. By the time we arrived the weather was a mess and although the corn maze was open, navigating a muddy maze with multiple wheelchairs was not very appealing. Thanks to a creative group who run the farm, the trip was not a total loss�they helped us load everyone up on to a covered wagon with haybale seats and took us on a ride out to the pumpkin patch! We chose pumpkins, sang songs, ignored the rain and all had a great time!

We had a quiet but nice Thanksgiving dinner here at home. My Dad was here recently overnight for a visit and Kyle adores having "Pop" come see him! We had a much better football season this year and now basketball is in full swing. We are SO enjoying Kyle's cousin, Jenn, being in college here at the University of Tennessee! She flew home to California Friday for their month long break and we miss her already!

What else?! Andy, Kyle's PA, has been keeping him busy with all kinds of social events. They've been to some movies lately, are always going out to dinner somewhere, go shopping, visit and have dinner with Andy�s family, and last week went to the Christmas choral concert at Kyle's high school. Kyle's teacher, Mrs. Sullivan, is so special and we are very fortunate to have her and her team - Nurse Jackie, Ms. Chapman, Mr. Gary, and all the energetic, caring Peer Tutors - working with Kyle when he is able to go to school. When he is not able to go, our nurse, Nikki, and Andy do a fantastic job of caring for him at home.

We are so blessed to have such loving, caring people in our lives � our family, friends, Kyle�s doctors and nurses and all the people who play a role in his life, including the many people we have never met who have touched our lives in so many ways. Thank all of you who are always checking in on Kyle, all of you who pray for us and think of us. It means so very much.

Well I think I have caught you up on Mr. Kyle! As always, my goal is to do that more often - and I will try harder. Again, happy holidays to all of you!

With love,

Claudia

Tuesday, October 10, 2006 10:30 AM CDT

Happy Autumn!

What a beautiful time of year here in East Tennessee!

Again, I am sorry for the long stretches between updates. And again, I will try to do better! Kyle is doing well despite his frequent seizures - he is still having 2-3 "seizure days" a week. We are keeping oxygen at home now in the hope we can eliminate some ambulance trips to ER and while it was disheartening to me to think we needed it, I am thankful it is just a preventative measure and not something he needs on a regular basis.

I've been spending quite a bit of time dealing with insurance issues on Kyle's behalf and that is always a daunting task! I am so thankful for Kyle's pediatrician who has stood by us and gone to bat for us during this entire journey. I am doing my best to convince him that Kyle will truly never be too old to be seen by pediatrics!

My mom, "Nanny", came to visit in August and we so enjoyed her visit. Our niece, Jennifer, made the wise decision to come to the University of Tennessee this fall (from California!) which has been such a treat for us! It's wonderful having her here and having the opportunity to spend time with her. I have had the opportunity to do so many things I've not been exposed to - moving someone in to the dorm, taking the girls shopping and to lunch....it has truly been so much fun. We have also enjoyed the visits with her family - Aunt Brenda, Uncle Sam, and cousin Michelle - who were here from CA with Jenn for freshman orientation, to move her here, and for the UT - Air Force football weekend. They have lived so far away and it's been so nice to spend time with them.

Kyle is enjoying football and dons his jersey and helmet every weekend to cheer on the VOLS. He has been to the golf course a few times lately which he always loves. He is still keeping his teachers and aides (and his Mommy!) hopping and as always, is a constant source of joy and entertainment!

Thank you for keeping him in your thoughts and prayers!

Much love,
Claudia

Monday, July 31, 2006 8:42 PM CDT

HAPPY 19TH BIRTHDAY KYLE!!!!!!!!!!!

I can't imagine it's possible! But it's true!

Thanks to my dear friend, Anne, who Kyle shares a birthday with, I learned how to add a video montage to Kyle's site. I hope you will enjoy watching it as much as I enjoyed making it! I lost a lot of pictures in the fire so the selection is not exactly what it might have been but I did find some wonderful pictures of Kyle. The song is so touching so be sure to turn your speakers on....it reminded me of Kyle the first time I heard it. Thank you Anne and Happy Birthday!

I just returned from a trip to Boston with my sisters Pam, Kay and Sandy. We had a wonderful time celebrating Pam's 50th birthday. Her son, Aaron, and Kyle were born on the same day 19 years ago so Happy Birthday to Aaron also. We plan to officially celebrate Kyle's birthday this weekend when my Mom gets here so I will update his site again.

Thanks to all of you who are always thinking of us!

Much love,
Claudia

Saturday, July 22, 2006 3:00 PM CDT

Greetings from HOT East Tennessee!

We've had a busy spring and summer and like most everyone else around the country are trying to stay cool at the moment. Some thunderstorms the past couple of days have cooled things down a bit, thankfully.

Kyle seems to wilt very quickly in even the least bit of heat so he's been inside a lot lately. He has been attending the summer session of special education classes when he's been able to go and will finish up on Tuesday with a few weeks off before regular school starts back. He's had several trips to the ER, and a couple of overnight admissions, due to seizures since I last updated and that's been most disheartening. Over the years we've seen all kinds of changes in seizure patterns but this spring he started having more respiratory involvement than in the past. His seizures are always prolonged but he rarely had respiratory distress. At one visit, the ER doctor called in our pediatrician, who is a geneticist, and our neurologist to discuss the possibility of "disease progression" - dreaded words to all parents of mito children. Needless to say, when they showed up I was very concerned. However, after examining Kyle and talking with us and with Kyle's nurse about what had transpired, they did not feel such was the case "at this time". The breathing difficulty sounds obstructive but there is no sign of true obstruction and the doctors felt it was poor tone during the seizures. They did not think it was due to brainstem involvement, which was great news, and they sent us home that day with a nasopharyngeal airway which will hopefully cut out some of the ER visits.

Kyle is still as happy as any person I have ever known! He usually starts the day with a song and finishes with another one! And my has he grown! He's finally put on a few pounds (JUST a few but we'll take them!)and is tall enough to look me in the eye when he tells me "NO"! And it's so hard to imagine he will be 19 on the 31st! Where does time go?! I will take some pictures of him and post them so you can see how grown up he really is.

I am off to Boston for a sisters weekend to celebrate my sister, Pam's 50th birthday! Thank all of you who continue to pray for us, who drop me notes and phone calls to remind me you are thinking of us, and who have held us close in thought for many years. I am so grateful for all of you.

Much love,

Claudia

Tuesday, February 14, 2006 2:53 PM CST

Happy Valentine's Day!

What a crazy winter it's been in East Tennessee! We had snow over the weekend with temps in the 60's this week. The weather certainly has kept us busy deciding what to wear each day!

We have not made any changes in Kyle's medication regimen since returning from Cleveland. What we learned, in a nutshell, was that (a) they had never seen seizures like his, (b) they identified 3 different types of seizures and suspect he is having a 4th type they simply did not capture on EEG/video, (c) he is not a candidate for surgery and (d) we can start re-trying medications if we want to. Dr. Wyllie did not have a solid recommendation for any of the meds to retry but said in her final report we could revisit Felbatol if we wanted to, based on our comments regarding Kyle's cognitive improvement when he was granted Compassionate Use by the FDA before it was approved in 1993. Unfortunately, after only 1 year the FDA recommended withdrawal of patients from Felbatol because of reports of very serious side effects, specifially aplastic anemia or liver failure. As a result, many doctors do not even consider prescribing the drug today and in order to get the prescription, we had to sign releases and Dr. Wyllie had to complete paperwork documenting that Kyle fit the criteria for prescribing it which is "Felbatol should be used only in those patients whose epilepsy is so severe that the risk of aplastic anemia is deemed acceptable in light of the benefits of therapy."

It's been extremely sad and incredibly disheartening to have to recognize Kyle's seizures are so severe that the risk of having them is greater than the risk of the possible side effects of a medication which could include death. I have yet to pursue filling the prescription and won't for a while. My dear friend, Tracey, has a son who has been on Felbatol for years with no problems. It's just a tough place to find myself - I don't seem to have an alternative I like. BUT.........that same friend has read Kyle's report and suggested another path for me to explore which I am doing. So stay tuned for updates! And THANK YOU Tracey!

Let's see.........what else? I had surgery just before Christmas and was off work for 8 weeks but I am doing great, back at work, and feeling fine. Thanks to all of you who wrote, called, and visited. I am so blessed to have such wonderful friends and family.

Enough for now. I apologize for the lengthy post but it's been far too long since I updated. I will try to get some new pics of my 18 year old up soon so do come back!

Much love,
Claudia

Thursday, November 24, 2005 8:59 PM CST

Happy Thanksgiving!

We are so appreciative of all you do for us.........the love and concern, the thoughts and prayers, the calls, emails, and cards. I am always mindful of and ever grateful for the wonderful people who have graced our lives, who we are so honored and blessed to have encountered, whether in person or only in our hearts. But especially today we are reminded of all the many, many things we have to be so thankful for, with all of you, our dear friends and family, at the top of our list.

I hope it's been a special day for you, full of fellowship, friendship, happiness and fond memories, shared with those you love.

Fondly,

Claudia

Thursday, November 3, 2005 7:11 AM CST

Good Morning!

Kyle was discharged yesterday evening and today we are heading home. But I wanted to get a quick update here to thank you all again for the kindness and concern you've shown us. What wonderful friends and family we have and I am so deeply thankful for each and every one of you.

I have to get ready to go so I will wait until tomorrow to update you on the outcome of Kyle's hospitalization. But I will say he was thrilled to get back to HIS room at the hotel! The suite was much nicer in his opinion than the one he had been staying in! Last night we searched all over for "my thumb". If you know Kyle, you know about what we refer to as "Kyle-isms" and how he comes up with words for things - and you know we don't always understand. Well, along those lines, last night he went on a search of the hotel suite for "his thumb"! In the closets, drawers, under the beds, in the beds, all around the bathroom, in the trashcans... he searched everywhere. After a quick check to assure he indeed had both of his intact, we determined "my thumb" was something else entirely and while we had NO idea what we were actually looking for, Kyle certainly knew so we did our best to help him find it...............to no avail. I only hope today he's forgotten about it........could be a long ride home if he's still focused on finding "my thumb"!!

Time to get moving and head south. I can't thank Andy enough for all the help he provided this week by going with us. Last night he tackled the glue in Kyle's hair from the EEG leads - quite a task to undertake! It'll be weeks coming out completely but Andy certainly got the process underway. And a heartfelt thank you to all of you again for everything you have done - and always do - for us. I'll get some details posted tomorrow!

Love,
Claudia

"I am beholden to those who have befriended me, whose kindnesses have renewed my hope, whose encouragement has restored my faith, whose love has taught me the meaning of love and enabled me to be more loving: they have made the world seem a friendlier place and given meaning to my days."

~Arthur Foote II

Tuesday, November 1, 2005 5:36 PM CST

Hi again

Wow........two updates from me in one day!

I am back at the hotel after a grueling day of seizures for a quick shower then back to the hospital to stay with Kyle tonight so Rick can get some sleep. Kyle has had horrendous seizures all day today and unfortunately has had to have mass quantities of IV ativan. Despite all the ativan, he is still having some seizures but has settled down quite a bit. What a day. But it's what we are here for and if we ever want him to have them, now is the time. And it's what happens when you don't give meds!!

Based on his seizures this morning it's not looking promising in terms of surgery as an option. It does appear they want to do some med changes and possibly replace the battery in his VNS (Vagus Nerve Stimulator). We will meet with the docs again tomorrow and I will update again as soon as I can get to a computer.

Thanks so much for holding Kyle - and all of us - close in thought and prayer. More tomorrow!

Much love,
Claudia

"I am beholden to those who have befriended me, whose kindnesses have renewed my hope, whose encouragement has restored my faith, whose love has taught me the meaning of love and enabled me to be more loving: they have made the world seem a friendlier place and given meaning to my days."

~Arthur Foote II

Tuesday, November 1, 2005 6:42 AM CST

Good Morning!

I want to post a quick update before I head back to the hospital. On Sunday, Kyle, his Dad, Rick, and Andy, Kyle's daily healthcare assistant, drove to Cleveland. It was a long 500 miles but Kyle was, as always, a great traveler. When we got to Kentucky, less than 1/2 way, he announced he was on vacation and was ready to go to "my room". He'd spotted plenty of hotels along the interstate and was quite ready for us to pick one and check in! For those of you who don't know Kyle personally, he LOVES hotels and hospitals and is always ready to check in to "my room". While the 2 are quite different, they are similar in that he gets to lie in bed and watch tv, he can have food delivered to his bedside, and he just gets to kick back and be waited on! Not a bad deal! So hotel, hospital......... either is fine with Kyle! Until yesterday. Kyle decided, after being in "his room" at the hospital for a little while, that the hotel suite from Sunday night was much nicer and has asked many times (MANY times) since his admission to go to "MY room". We even made a sign with "Kyle's Room" on it to put on the wall but he's not buying it - he knows he has a hotel suite out there somewhere!

We had an appointment with Dr. Wyllie at 10:00 yesterday morning. It was a very good meeting with her again and I am very certain they are going to do everything they can while we are here to try to determine what Kyle's options are and what is best for him. He was admitted following our appointment into the epilepsy monitoring unit and we are now waiting on the seizures. Dr. Wyllie suspects he is having multiple types of seizures, which obviously makes treatment difficult, but we are hoping to at least be able to reduce the most debilitating type. They have reduced his meds which is a sure way to bring on seizures, so I am a bit anxious today - reducing or stopping medication quickly can be frightening. But they do have IVs in place should he go into status (seizures that don't stop) so they can give IV medication if necessary.

Other than opting for his hotel suite over his hospital room, and announcing it on a regular basis, Kyle is doing well. He has been very focused on the leads and wires stuck to his head and his admission wristbands so we are holding hands a lot. Toss in the IV and he has plenty of things to try to pick at, pull on, and attempt to remove which keeps Mommy, Daddy and Andy on their toes!

Thank all of you SO much for the thoughts, prayers, emails and phone calls! You can never know what it means to us.
More later..................back to my boy!

Much love,

Claudia

"I am beholden to those who have befriended me, whose kindnesses have renewed my hope, whose encouragement has restored my faith, whose love has taught me the meaning of love and enabled me to be more loving: they have made the world seem a friendlier place and given meaning to my days."

~Arthur Foote II

Tuesday, October 25, 2005 9:23 PM CDT

I am always so touched by the outpouring of love, concern, and compassion we receive on a daily basis from our family, friends, friends of friends, and people we've never had the pleasure of meeting. Many of you know Kyle is to be admitted next week at Cleveland Clinic Foundation's Pediatric Epilepsy Center for extensive seizure monitoring and have asked if we'd be updating his site. Although I have not done a good job of keeping it current at all lately, this is a wonderful opportunity for me to get back on track! Thank you for asking!

Kyle's seizures have persisted over many years despite all efforts to gain some semblance of control. He was seen at CCF in 1993 and we were told at that time he was not a good candidate for surgery BUT that he did show some patterns in terms of the part of the brain where his seizures originated. They simply spread to the rest of the brain too quickly to make surgery a viable option. Dr. Wyllie, a widely recognized Pediatric Epileptologist, told us at that time we might see changes in his seizures as he matured and if so, we should have him re-evaluated. And indeed, we have seen changes.

So Kyle is to be admitted on Monday and our hope is to determine if he might now be a candidate for seizure surgery.......and if not, at the very least, we hope to acquire some guidance as to the best treatment options for him. Much has changed in the world of epilepsy since we were there in 1993 and we need some new insight as to what is best for him. The EMU (Epilepsy Monitoring Unit) is one of the top units in the country and I have every confidence we will gain some valuable input.

Thank you again for your thoughts, prayers, love and well wishes. I promise to keep you updated throughout Kyle's hospitalization so please come back and visit!

Fondly,

Claudia

"I am beholden to those who have befriended me, whose kindnesses have renewed my hope, whose encouragement has restored my faith, whose love has taught me the meaning of love and enabled me to be more loving: they have made the world seem a friendlier place and given meaning to my days."

~Arthur Foote II

Sunday, July 31, 2005 10:32 PM CDT

HAPPY 18TH BIRTHDAY KYLE!!!!!!!!!!!!!

Saturday, July 31, 2004 8:42 PM CDT

HAPPY 17th BIRTHDAY KYLE!

And hello family and friends! How can Kyle possibly be 17 and how can it have been so long since I last updated his website?!

Kyle is doing well. He has grown nearly 4" taller since his surgery in December and can look me square in the eye now. And he has gained almost 10 lbs! This is definitely cause for celebration...........Kyle had not gained any significant weight in years! He looks so much better since his surgery........so tall and straight......and handsome! Kyle will be starting back to school in about 3 weeks and I think he will actually be happy about it. The seizures continue to rear their ugly head but we are changing medications yet again and hope the new combination might provide better seizure control.

I cannot begin to thank all of you who have shown such incredible kindness to us since we lost our home in a fire in April. Words cannot express the depth of my gratitude. This has been a difficult and challenging time but we are finally in a new house, settling in and starting over. During those times I am coping with life's tribulations, hardships, adversities - those times when life seems so dark - I hold on to the realization that the sun WILL return. And I remind myself that even in the darkness there is light - the stars are only visable in darkness and the darker it is the more we can see, the more brightly they shine. All of you are our stars..........you shine through for us so faithfully, time and time again. Thank you from the bottom of my heart for holding us so close in thought and prayer.

With love,
Claudia

"Real faith is the ability to let your light shine after your fuse is blown." Anonymous

Thursday, January 1, 2004 1:57 PM CST

Happy New Year!!!!

What a few weeks! Kyle is doing wonderfully and we are so proud of him! He visited the orthopedist for a recheck on the 23rd and much to his delight the doctor removed his bandages and left them off! We shared in Kyle's elation over this as he had been removing the bandages as fast as we could get them on.........and I don't miss AT ALL trying to work with that tegaderm! What a mess we made of that stuff! The doctor was absolutely thrilled with his progress and with the outcome of the surgery. X-rays were taken and the success was undeniable. The "before" radiograph revealed Kyle basically had use of only one lung prior to the surgery. Not anymore! Prayers indeed have been answered! Thank you!

Kyle still moves about a bit tentatively but is determined and is learning how to get around with a straight spine and a back full of metal. I watched him the other day as he bent over to pick up a toy from the floor. The old way didn't work so he stood up, pondered for a moment and figured out how to lower his body to the floor. It's actually hard to believe his surgery was only 4 weeks ago yesterday. The seizures are back in about the same frequency as before and we are dealing with them.........life continues to return to normal.

I apologize for the delay in updating. I spent the week of Christmas in bed with the flu and am still not up to par. It is ONE mean virus and truly knocked me to my knees. So much for that flu shot I got! We immediately put Kyle on Tamiflu and thankfully he managed to avoid it.

Hope all of your holidays were merry and bright and that 2004 will be a blessed, prosperous year for each of you and your families. Your continued thoughts and prayers for Kyle and our family are deeply appreciated. Stay tuned for further updates!

Much love,
Claudia

Friday, December 19, 2003 9:41 AM CST

Happy Holidays!

It's been two weeks since surgery and Kyle continues to improve each day - despite the seizures that have been occurring daily for the past 3 days. He DID go 12 days without one which is just not the norm for Kyle. This was such a blessing as it gave the incisions more time to heal. Enough about seizures though!

Kyle is getting around much better, having much less discomfort, is very talkative, and seems to feel quite good. And he is so straight and so tall! He is bending, climbing (UGH), walking, getting in and out of bed....just doing so well. He is still wobbly and weak so we are there beside him but have to do very little support anymore. He is definitely eating well - much better than he is sleeping - and we are frequently cooking at 2 or 3 AM! If he will eat, I certainly will cook!

Kyle continues to beg to have his bandages taken off. And he works very hard at doing just that so we are holding hands a LOT! We have told him the doctor wants them on so he now hands us the phone and asks us to dial Dr. Peeden, his pediatrician. He is going to try to talk someone (anyone!) in to getting those things off!

More updates soon! Thank you for your continued thoughts and prayers. We are anxiously awaiting Santa's arrival and wish all of you a blessed holiday season.

Love,
Claudia

Wednesday, December 10, 2003 6:50 PM CST

Kyle is home!!!!!

He was able to come home last night and although it's been a hectic 24 hours we are getting adjusted to recouperating at home. He is doing so well and we are so very proud of him! His back and chest are so straight and I do believe he is even more handsome than before!

I apologize for the delay in updating Kyle's Korner. I have not been able to get to a computer and Aunt Katie has been traveling. Kyle has continued to make progress and has yet to complain about any of the demands made on him. Physical therapy worked with him daily and even though he was clearly in pain he did what was requested of him. We spent quite a while with PT yesterday learning how we needed to work with Kyle at home, we worked with nursing on care of incisions and dressing changes and we spoke with surgeons about follow up. And FINALLY we were able to come home last evening!

Thank you again for the many thoughts, prayers, cards, gifts, phone calls. We are so very blessed to have so many wonderful, loving friends and we are deeply grateful for each of you. We will continue to update as promised!

Love,
Claudia

Sunday, December 7, 2003 5:55 PM CST

After a rough night Kyle has had another good day today. He was able to sit and maintain his balance for his physical therapist today on the side of the bed, stood and walked some with assistance and is now going to the bathroom with help! What a trooper!

His labs remain good, vitals are great and every day we see marked improvement. He still has a long road ahead but is taking it all in stride - so very much like Kyle. He is resting tonight and watching his favorite videos.

Back to the hospital. Thanks so much for the support!

With love,
Claudia

Saturday, December 6, 2003 6:05 PM CST

Kyle had a rough night last night but today has been a very good day. Kyle woke me at 6 singing "If You're Happy and You Know It Clap Your Hands" - based on the entries in his Guestbook here it must have been for you Terri! Even in his pain he is so precious and polite.........when the nurses turn him which really hurts he asks them to "wait, Wait....WAIT" then "Please" and when that doesn't work he politely cuts his eyes at them and says "Excuse me!!!" I suspect what he really means is "Excuse YOU". For those of you who know Kyle you will smile at the precious things we refer to as "Kyle-isms". For those who have never met him, he is one funny, precious little boy who has the most endearing way of saying things and he is always so polite. He even thanks doctors for spinal taps because he wants those stickers they give!

Physical Therapy came by today and the goal was to have Kyle sit on the side of the bed. This was huge since he has not even been able to tolerate being turned very well. Once he was on the side of the bed he decided he wanted to stand up!! The PT was thrilled and so were we! He actually wanted to walk but they were concerned it was a bit much so had him sit back on the bed. But Kyle was not done. He stood 3 times before they left and since he was beginning to look a bit pale the therapists took off before he could ask to "do it again". He is eating some jello and ice cream today and drinking well for the first time. His catheter has been removed. Labs are much better. Both the orthopedic surgeon and the thoracic surgeon are happy with his progress. His lungs are clear today and his vitals have been stable and good. He still has a low grade temp but it has stayed quite low for the past 24 hours. This is all not to downplay his pain and discomfort but he certainly has had much progress today.

Your love and thoughts are cherished and prayers are being answered. Thank you so much for your continued love and support. More tomorrow!

Love,
Claudia

Friday, December 5, 2003 11:44 AM CST

I am home for a quick shower and had my first chance to sign on to Kyle's Korner..........I am so overwhelmed and touched by the many, many messages left in his guestbook. I cannot express to you what the love and support you have all offered through visits, phone calls, emails, messages have meant to us.

Kyle is doing okay. He continues to improve and today said "Mommy" so I have now seen him move his hands, watched him move his feet and heard him speak!! The swelling in his face is much improved today and he is beginning to look like our beautiful boy again. His vital signs remain good, he had the drain tube removed from the posterior incision today and will hopefully be able to have the NG tube removed by tonight or tomorrow - once he is awake enough to swallow liquids. He is still in ICU as he is on heavy doses of morphine. ICU is packed and we may be able to move to a private room today if the space is needed for more critically ill children. There has been some fluctation in his labs - potassium, calcium, sodium etc........but nothing extreme and nothing unexpected. The big goal for today is to raise his bed to a sitting position and to try to get him awake a bit. Seizures are definitely a concern and we know they will eventually happen........I will actually be relieved once they rear their ugly heads so we can see how it impacts the incisions and learn how to best deal with them during his recovery. Hopefully it will occur while he is till in ICU in case intervention is needed.

Kyle is such an amazing, precious boy and he will make it thru this with his ever-present grace and courage. After 16 years of having the distinct honor of being his Mommy, he continues to teach me SO much.

Thank you again for the comfort you have provided us during this surgery. We will keep updating!!

Much love,
Claudia

Thursday, December 4, 2003 4:40 PM CST

Hello everyone. Here is today's update on Kyle. He is still very sedated, but had the ventilator removed so is breathing on his own. The thoracic Doc removed the drain tube from the incision in his chest. He has been running a temp of about 102, but the nurses say that is pretty normal. I think the Doc's are all pleased with his progress so far. Kyle will probably remain in ICU for another day or so.

Claudia once again thanks you all for your sweet notes. I'll be leaving tomorrow to head home to Colorado, so it might be a few days before Claudia is able to give you all another update. Please continue to keep Kyle in your prayers. Love to all, Aunt Katie

Wednesday, December 3, 2003 9:41 PM CST

Greetings to friends and family of Kyle Hughes. This is Aunt Katie providing you with an update on Kyle's condition. Well, our sweet boy did real good! Kyle's surgery went well. The Dr.'s were very pleased and they finished the surgery a lot sooner than we had expected! Kyle came out of surgery around 2:30 pm, and was in recovery about an hour or so. He is now in ICU, and will be for a few days, depending on his progress. We were all able to see him briefly and he looked good considering what he had been through!
They will keep him sedated through the night, and will let him start waking up tomorrow. The next hurdle is to keep him as pain free as possible, and the nurses are prepared to do just that. Claudia is staying at the hospital tonight to be close to her baby boy, and wants me to thank you all for your well wishes and prayers. Please continue to keep Kyle in your prayers as he begins his long road of recovery. I'll send an update tomorrow night also. Love to all, Aunt Katie

Wednesday, December 3, 2003

Hi!!!

It has been far too long since I update Kyle's Korner. And I apologize! I have stayed in touch with many of you over the past year and as always appreciate your ongoing thoughts and prayers for Kyle and our family. But in the sleepless wee hours on the day of Kyle's surgery, amidst the flood of emails and phone calls we have been so blessed to receive, I realized it was time to restore his site. I am always so deeply moved and filled with gratitude when I experience the outpouring of love and concern for this precious, beautiful child. So many friends, old and new, some we have never met except in our hearts, have taken time to extend love, offer prayers, and send well wishes for a speedy recovery. I would love to personally call each of you with updates on Kyle but since I cannot I will post news here in the hope you will visit often.

Kyle will be admitted at East Tennessee Children's Hospital at 5:30 this morning for an Anterior/Posterior Spinal Fusion to correct his scoliosis. (For info on this surgery: http://health.yahoo.com/health/centers/back_pain/407.html). We have been told to expect the surgery to take anywhere from 8 - 12+ very long hours. The original plan was to have a Posterior Fusion which would have been a 3-5 hour surgery but Kyle's body did not cooperate and his curvature and rotation progressed significantly between our scheduling of the surgery and our pre-op visit. Thus, the only option now is for the dual approach.

I have asked Kyle's Aunt Katie to update the site for the next several days as I will most likely be uncomfortable leaving him until he is moved out of ICU. Aunt Katie and Uncle Kenny (along with their puppy, "Fibi") flew in today from Colorado to be with us as did "Nanny" from Florida and "Pop" and "Mommy Jane" from North Carolina. Tonite we all went to Celebration Station, Kyle's favorite place on the planet (or at least in Knoxville), and had the best time! We are so thankful to have them all here with us.

Thank you so much for visiting Kyle's website. Please come back often! And be sure to sign the Guestbook. If you missed Kyle's Dream Connection trip and have some time, read the past journal entries - what a time we all had! And yes, I have added new pictures!

Your thoughts and prayers for Kyle, his surgeons, the OR and ICU staff, the many people who will be caring for him over the course of the next few months, our family - for everyone involved in this chapter of Kyle's life - are appreciated more than you can ever know.

Love,

Claudia

"Courtesies which may, when extended, feel to be of a small and trivial character are the ones which strike deepest in the grateful and appreciating heart." --Henry Clay

Sunday, July 07, 2002 at 09:07 PM (CDT)

Hi!

How time flies! I cannot imagine that it has been months since we last gave you an update on Kyle.....we are way past due and I apologize!

Kyle is having a quiet but enjoyable summer. He has some autonomic difficulties and his body temperature doesn't regulate properly - he doesn't sweat! - so summers for Kyle are typically more indoors. He goes to the mall, can visit places like the aquarium and movies and Celebration Station so he stays quite busy. On cooler days we do get him to the park and let him do other things outside. His wonderful caregiver, Veronica, has made certain that he is entertained! Kyle is attending summer school and has actually seemed to enjoyed it - he loves riding the bus!

Kyle has had a bit of an increase in seizure frequency over the last few months so we are tweaking his medications and trying to get that resolved. Hopefully this will pass in no time!

Hope everyone is having a nice summer! Thanks for keeping Kyle in your thoughts and prayers........he is a precious little boy!

Fondly,

Claudia

Saturday, March 23, 2002 at 08:45 AM (CST)

Wow - can another month really have passed?! We are all fine and are ready for spring! We had torential rains last week - up to 7-8 inches of rain fell in a little over 2 days and school was even cancelled for 2 days due to the subsequent flooding. But the sun has come out, the dogwoods are blooming and everything is looking green and new again!

Kyle is on spring break next week and will no doubt enjoy his time away from school. He and his caregiver, Ms Ronnie, will venture out and do some fun things around here. He's had fun watching some of the NCAA tourney and will be tuning in to cheer on the Lady Vols tonight!

This week two people very close to Kyle have died. His grandfather - Rick's dad - Jess Hughes, passed away last night. Jess adored Kyle and the feeling was quite mutual! He was a very special man and we will miss him. Our friend Tami Ashley who was such a devoted friend to everyone she met, including Kyle, also died this week. She will me missed by so many and always remembered fondly. Please keep their families in your thoughts and prayers.

Hope this finds you all well and happy. More from our house to yours soon!

Love

Claudia

Wednesday February 20, 2002 5:07 PM CST

Hi again!

Wow, where does the time go? I can't believe that it is already February and that the month will soon be gone.

Kyle is enjoying his new school very much. And that has been a huge relief! Change can be difficult and he didn't have time to transition - just woke up one day and headed for a new school. A lot of his longtime buddies are there too so it was kind of like a reunion.

Speaking of reunions, we are going to be heading to Lake Logan in beautiful NC late this spring to meet the Magruder clan. We are looking SO forward to the trip. With the 6 of us kids spread out all over the place we rarely have a chance to get together.

Pop and Mommy Jane are making all of the plans. Kyle's Aunt Pam and family will be coming from FL. Cousin Emily is in her first year of college which is hard to believe! His cousin Aaron was born on the same day as Kyle was - an hour apart! We haven't seen them, along with Andrew and Lizzie, in a long time so it will be great fun.

Aunt Susan, Uncle Jim, Blair and Shea are the only ones who can't come (from Oklahoma) and they will be greatly missed. I am sure we will burn up the phone lines with them! Aunt Sandy, Uncle Bill, Taylor, Brooklyn and Kennedy will be coming from OK though. Aunt Katie and Uncle Kenny are coming from Colorado and Uncle Jack from Georgia.

We are VERY excited that Jack's twin daughters, Haille and Neille will be there!!! We =really= haven�t seen them in a long time! They are my Godchildren and I remember the very moment they were born! They are now beautiful young ladies - they are our miracles � both weighed less than 2 lbs. at birth. We are hoping Jack�s daughter Ashley can come as well.

We have so much fun when we all get together. With the 6 of us, spouses, Kyle and his 12 cousins it is quite a lively bunch with plenty to do. We play cards, play games, laugh and tell the same stories over and over (and over). It is just too bad we can�t do it more often.

Thanks again for stopping by to check on Kyle! He has had an increase in seizure frequency so please keep him close in thought and prayer and we will keep posting updates. You are all so very special to us!

Love,

Claudia

Saturday January 26, 2002 11:07 AM CST

Greetings everyone!

Hope this finds you all having a nice new year! We certainly have been!

Kyle started attending a new school after the holidays and really seems to be enjoying it. The weather has been quite mild for this time of year so he has even had a chance to play some golf with his dad lately. And he LOVES that! I will post some pictures of him on the golf course soon, so be sure to check back.

Healthwise, Kyle is doing okay at the moment. His seizures seem to be increasing a bit so we are juggling medications again, trying to find the right combination and the right doses. Tis a never ending process it seems. We are replacing one medication with a newer one and hope to see less sedation along with improved seizure control. Time will tell! Despite the constant challenges, Kyle remains such a funny, happy, loving, delightful child.

We will update again very soon so please come back and visit again. In the meantime, please keep Kyle in your thoughts and prayers.

Love

Claudia

Wednesday, December 26, 2001 at 05:45 PM (CST)

Well, one of the downsides of trying to keep up this website is the disappointment when something doesn't work! I updated the journal entries twice yesterday and now the most recent one has disappeared into cyberspace.

I had wanted to wish each of you a happy holiday season. And to tell you how VERY much it has meant to me to have SO many of you visit Kyle's site! I have been overwhelmed, quite honestly, with the response and am so touched each time I find a message in the guestbook. I am in awe at the number of friends we have - some of you whom I see very often, some every now and then, and some whom I have not seen in a long, long time. I am reminded that true friendship is not erased by time, space, or distance. And I am very grateful and feel so incredibly honored to have such wonderful, caring friends. Thank you for keeping us close to your hearts.

I also finished our Dream Connection update yesterday and moved it to the journal entry history. New pictures are up too! I plan to keep updating the site on a regular basis so please come back when you can.

Thank you again for your love and support. May your holidays be merry and bright and may 2002 be everything you wish it to be!

Love,

Claudia

Wednesday, December 26, 2001 at 05:44 PM (CST)

Tuesday, December 25, 2001 at 05:52 PM (CST)

It has taken me a while to get our last Dream Connection update on here. Seems as if we have been in a whirlwind since we arrived home on the 3rd and I apologize! Here we go.....

We spent our last day of Kyle�s trip at EPCOT - and we had another great time. Once again, the weather was perfect and leaving that behind was certainly difficult! But on to EPCOT! We met Rick and Peggy at the Polynesian Village and took the monorail over to the park. Kyle LOVES the monorail (he loves all trains) and thanks to a friend, we were able to maneuver a ride in the nose with the driver! It was great and the view from that spot is amazing. The monorail arrives at EPCOT and winds around the park before you stop so we had the opportunity to see a great view of everything from our special seats. The driver gave Kyle a card designating him as an official co-pilot of the monorail so we started our day with a special treat!

I had never been to EPCOT before and was quite impressed with how well they combine learning with fun. The park is huge so I understand now the �nickname� meaning of EPCOT I have heard (Every Person Comes Out Tired). We saw lots of the characters again here and the entertainment all around was great. Everything was decorated for the holidays and in line with the 100th Anniversary Celebration.

We started out with a visit to the 3D Movie, �Honey I Shrunk the Audience�, a hilarious show starring Rick Moranis and others from the �Honey� movies. The good professor�s experiment goes awry and the audience feels the repercussions... literally! Let�s just say that mice run loose in the audience, the HUGE dog sneezes, and other surprises serve to keep you awake and laughing. Before you enter the theater for the movie, you see a preshow film, compliments of Kodak. The preshow, entitled �True Colors� is great in and of itself and the script is something we would all do well to remember:

HOW TO IMPROVE YOUR IMAGINATION: Use it ~ Ask questions ~ Take risks ~ Take a picture ~ Take a vacation, without leaving your home ~ Be curious ~ Expect the unexpected ~ Invent your own language ~ Think sdrawkcab backwords ~ Doodle ~ Build a model, without the instructions ~ Look at the world from a different angle ~

EXERCISES FOR YOUR IMAGINATION: Stretch your mind ~ Play "what if?" ~ Pick up a camera and see what develops ~ Stay up all night ~ Write with your opposite hand ~
Take a blank piece of paper, then do something with it ~ Make believe ~ Remember: Things aren't always what they seem ~

HOW TO JUMP-START YOUR IMAGINATION: Think about something else ~ Talk to yourself ~ Talk to the animals ~ Look at the BIG picture ~ Look to nature for Inspiration ~ Play ~ Be playful ~ Look at the world through the eyes of a child ~ The first rule of imagination: there are no rules ~ If you can imagine it, you can do it ~ Believe in yourself ~ Never say never ~ Imagine the possibilities - the possibilities are endless

HOW TO COME UP WITH AN IDEA: Brainstorm ~ Don't procrastinate ~ Turn your thinking inside out ~ Notice the little things ~ Get in touch with your inner child ~ Loosen up ~ Stay focused ~ Daydream ~ Paint something ~ Use all the colors of your imagination ~ Imagination comes in many colors

We visited the Living Seas and saw the manatees and other sea life, took a flight simulator type ride on the Body Wars presentation�..basically, you are shrunk down to the size of a single blood cell and travel through the human body. One of the most impressive exhibits to me was �Living with the Land�. I had no idea that Disney was on the cutting edge of such agricultural technology until we visited these prototype greenhouses. Did you know that approximately 30 tons of fruits and veggies grown right at Disney are served in WDW restaurants?! It was impressive and educational all at once.

Of course, the day would not have been complete without a ride on something fast and furious. Enter: Test Track! Much to Kyle�s delight, this ride reached speeds of about 65 mph and it climbs, jerks, snakes and shakes, spirals, even crashes through a wall. The ride simulates a General Motors car test system and you ride on board as a �tester� (or perhaps a crash test dummy!). You have the opportunity (if you choose to call it such) to test weather and other conditions (extreme heat (140 degrees) and cold (40 degrees), water, wind � you name it); suspension tests (interpret: VERY bumpy roads); various road conditions (hills; bank turns; a near collision with an 18-wheeler) and you even crash through a wall. You end up outside where the track circles the building and you run your �victory laps� racing at about 64 mph on an impressive bank angle. Need I say it? Kyle loved it!

We also visited Downtown Disney for a bit before dropping Rick and Peggy off at the airport for a late night flight. It was a great day and a great way to end up a wonderful, wonderful trip! Thanks for sharing it with us!

Sunday, December 02, 2001 at 08:57 PM (CST)

Boy, I have gotten behind! Let me try to catch you up a bit. The last journal entry was for Thursday so here we go!

On Friday, Kyle woke up having seizures. And he continued to have them off and on, basically all day. Although we certainly hated it, I have to say that we were thrilled he made it this long. He had not had any seizures since the day we left, so we couldn't complain - too much. After 3 big seizures and lots of medication, he finally went to sleep late that afternoon. So, we ended up taking it easy in the Village that day.....which was fine.

When Kyle woke up, Lynn and I decided to take him over to the Fishing Gazebo for a fishing contest. Kyle had a great time - even though there weren't many fish being caught! He was pretty worn out from the day of seizures, so it was a perfect activity. That evening, Rick and Peggy came out to the Village and spent some time with him while Katie, Kenny, Lynn and I went out for the best steak we'd ever had!

Have I mentioned the weather?! We have had the most perfect weather the entire time. It is difficult leaving it behind, especially given all the news of wacky weather around the country.

Today is Sunday and we are on our way back to Knoxville. But I still have a day to catch you up on so will save that until tomorrow. I am changing the pictures tonight though so be sure to take a look!

I am so very touched by the many entries in Kyle's Guestbook, many of you whom I haven't seen in a very long time. I am ever grateful to those of you who keep us in your thoughts and prayers. Thank YOU!

Claudia

Friday, November 30, 2001 at 02:44 PM (CST)

Hi again,

Yesterday was another great day for Kyle � and for all of us. We got up very early for a photo appointment here at the GKTW Village with Mickey and Minnie. Kyle has been staying up past 2 am every night so I wasn�t sure if he�d make it! But he did and it was fun. Mickey and Minnie brought Cinderella, Goofy and Goofy�s son along so we had breakfast with several characters.

We took off for MGM and had another fun-filled day. Since this is the 100th anniversary of Disney, the parades and shows have all revolved around that theme. MGM, in keeping with the others, has a great parade. Characters are everywhere at MGM so everywhere you turned you had a photo opportunity. We took the �Back Lot Tour� and got to see how special effects are filmed��they actually filmed a battleship scene in a huge water tank using people from the audience and it was funny. Kyle jerked his shoes off when he saw the water tank and told us he�d be right back! We did the Great Movie Ride, which was neat too. MGM has �Toy Story�, �Little Mermaid�, �Beauty and the Beast�, �Hunchback of Notre Dame� and �Indiana Jones� shows and a �Honey I Shrunk the Kids� playground where everything is huge � none of which seemed to interest Kyle. I just knew the 3D Muppet Vision show would be the hit of the day for him (and it WAS hilarious), but I was wrong. Nope � his favorite for the day was the Rock n� Roller Coaster with Aerosmith. To be honest, if I had known what I do now, I am not sure I would have let him go � but he loved it! I knew we were in trouble when I saw the head supports. Just as we were about to be catapulted into space (the ride takes off and goes from 0 to 60 mph in 2.8 seconds), Peggy thought to ask if the ride turned upside down � and the reply was �Yes, THREE times�. Too late to change our minds then!

Here is what they say about the ride: �America's premier rock band, Aerosmith, who have sold more than 80 million records and influenced generations of musicians, have teamed with Walt Disney Imagineering to create a high-speed thrill ride that will literally rock and roll Disney World Resort guests. The Rock-n-Roller Coaster starring Aerosmith, located at Disney-MGM Studios, is an indoor roller coaster featuring a high-speed launch of 0-60 mph in less than three seconds. Also included are three inversions, rock concert lighting, and an Aerosmith soundtrack blasting from 120 onboard speakers in each coaster train. Guests aboard each "limo" will encounter nearly 5 Gs as they transition from launch to loop at the ride's first inversion. By comparison, astronauts aboard the Space Shuttle experience 3 Gs at lift-off. Throughout the attraction, more than 900 speakers generate over 32,000 watts of audio power, just like a rock concert. The 3,400-foot-long track is more than a half mile of sudden accelerations, dips, loops and twists and turns.� And Kyle loved every single minute of it! Mommy and Peggy on the other hand��.. I guess it is a good thing you are in the dark so you can�t see where you are going. Those loops and corkscrew inversions are something I wouldn�t want to know about ahead of time!

After a full day at MGM, we made it back to the Village in time for the Christmas party. The Village is decorated for Christmas and there were cookies to be decorated, cards to be made, music in the air and visits with Santa for each child. He sat in one of two big throne-like chairs in the Castle of Miracles. When Kyle�s turn came, he was so impressed with the big chairs that he ran and sat next to Santa in the empty chair. So, Santa promptly got out of his and joined Kyle! It was fun and of course, there were more presents for all the children. (And the elf is still coming to the cottage and leaving things every day too).

This has truly been a dream come true. We are so grateful to the Dream Connection and to Give Kids the World for allowing us this opportunity. The volunteers here have been amazing. The people at all of the Disney parks have given us incredible treatment, letting us ride things more than once, putting Kyle in the best seats, and taking time to smile and talk to him.

I will close for now with that same thought in mind�..the thought for today at the Village is: �It is one of the most beautiful compensations of this life that you cannot sincerely try to help another without helping yourself. We thank our volunteers who reach out every day to bring smiles to everyone they meet.�

Have a Fantastic Friday!

Claudia

Wednesday, November 28, 2001 at 09:05 PM (CST)

What a FUN day! The morning started off for Kyle with a visit from an elf here at GKTW who brought the day's schedule along with a toy for him. What a great place this is - I can't say enough about the devotion to the children and their families who are guests here. Amazing.

Kyle went to the Magic Kingdom today and boy, did he ever have a blast! He saw Mickey and Minnie and all the gang and even had pictures made with some of them. He loved the carousel (you know how he is about horses!) and enjoyed the Lion King production. He rode boats and trains and flying elephants. He saw a parade, watched a special show at the Castle, and saw the fireworks.

But, much to my surprise, his favorite rides today were any of them that resembled a roller coaster - the faster, the better....the more curves, the more fun.....the bigger the drop, the more he laughed....and of course, the wetter everyone got on the "splash" rides, the more he clapped - and clapped and clapped!

He was a very tired little boy tonight but just had to stop when we got back to the GKTW village to ride the carousel here. And when he flashed that charming smile, he managed to get several more turns before we had to literally pull him off of his horse. After he had ice cream at the Ice Cream Palace, we managed to get him back to the cottage where I hope he will sleep very well!

I took so many pictures today but am having trouble with the camera. As soon as I can get them, I will put some here. You need to share his joy!

Happy Thursday!

Claudia

Today's Thought from our GKTW daily newsletter: "You can dream, create, design and build the most wonderful place in the world....but it requires people to make the dream a reality." Walt Disney

Wednesday, November 28, 2001 at 09:05 PM (CST)

Wednesday, November 28, 2001 at 12:01 AM (CST)

Hello again!

Today it was time to bid farewell to beautiful Sanibel and head for Give Kids the World. Aunt Katie and Uncle Kenny (my sister and brother-in-law from CO) came with us and Kyle's dad, Rick, and Kyle's "other mom", Peggy, will fly in tonight.

I cannot express how utterly amazed we are with the Give Kids the World (GKTW) Village! At check-in, we were told to all come in for registration and Kyle was given a stuffed Mickey Mouse (which he promptly leaned over and kissed) and a t-shirt. We were given an official welcome and orientation and the village is simply incredible. And that is putting it mildly!

Our cottage is great - 2 Bedrooms, 2 baths, and Kyle's room is so bright and big. Our refrigerator was stocked, the table was covered in candy, we even have been provided with sunscreen and film. The village has a movie theatre with 2 movies a day - with all the popcorn and candy you can eat. Every Thursday night is Christmas at the village - cookie decorating at 7:00 and Santa's arrival to follow. Want ice cream? You've got it - all day long at The Ice Cream Palace. We can go fishing - which I am sure we will do - hike the nature trail, visit the Wacky Works waterpark or swim in one of the 2 pools. We have trains to ride, a carousel, and elves that visit your cottage and leave you gifts.

There is an arcade, clowns, art contests, a snoring grandfather clock, even Parents Night Out. Meals are provided at the Gingerbread House Restaurant. The Mayor is a 6 foot tall rabbit named Clayton and he will come tuck your children in at night if you would like him to. His birthday is every Saturday and there is quite the birthday party for him we hear.

It is indeed a dream come true - for us grownups too! If you never leave the village at all, you will never run out of fun things to do.

Tomorrow is Wacky Wednesday here. So more to come - with some pics too!

Fondly,

Claudia

Today's GKTW thought: "Always use the word IMPOSSIBLE with the greatest of caution!"

Sunday, November 25, 2001 at 09:12 PM (CST)

Dear Friends,

I can never visit Sanibel and not be in awe of it all. The expanse of the ocean, the beauty of the surroundings here, the millions and millions of shells at your feet. I don't know how you could come here and not pay attention to them....the shells. They wash right up to your feet, hundreds at a time. They come in every shape, size, texture and color - just like we all do. Some are not whole but mere fragments of shells, but all so beautiful in their own unique way. As I watch them wash up to shore, I wonder how long they have been on their own journey - how long it has taken them to make it to this point. And I always feel as if I will take something special away from other people if I remove them from the beach. Yet each time I come back, there are more, just as beautiful, to replace those that I have taken.

Anne Morrow Lindbergh wrote her book, "Gift from the Sea" while here on Sanibel and Captiva Islands....it is a beautiful story of light and life and love. When I am here, I see so clearly how she was inspired to write it.

Our beautiful Kyle was able to experience Sanibel today for the first time! He had a nice lunch with Nanny and our friends the MacKinnons. Later, he had great fun on the beach, looking at shells and the birds that stand so patiently along the shore. He could not decide which way he wanted to go first - so we went in every direction! He finished up his day with a swim in the pool and his delight would have made everyone of you smile.

Thanks again for visiting. More tomorrow from the beach!

Claudia

Friday, November 23, 2001 at 10:30 PM (CST)

Kyle's vacation has begun! We did, however, have some challenges yesterday when he woke up having seizures. After a tough day for him of multiple seizures and lots of medication, we did manage to pull out of Knoxville last evening. Thankfully we were able to get in touch with his doctor's office, find a pharmacy that was open on Thanksgiving (AND had his medication in stock in the proper dose), so we could get a back up to our back up emergency stash and leave with peace of mind.

For those of you who know Kyle's unique (and quite precious) personality (or as we fondly refer to them: Kyle-isms), it will come as no surprise that he was thrilled to be on the road again! For those of you who have not had the distinct pleasure of meeting Kyle in person, suffice it to say that he absolutely adores staying in hotels. We have been known to go down the street to stay overnight just as a special treat for him! Kyle does not understand hotels and motels and geography per se, but he certainly does equate the word "vacation" with "getting MY room" and he can't wait to get to his destination - wherever it may be - and check in.

Last night we stopped in Macon, GA and tonight we have stopped in Gainesville. (Can you believe =I= stopped in Gator Country to spend the night?!). Another plus in Kyle's mind has been the van we rented to come down in....."his bus". He is able to watch his favorite videos, enjoy the ride and has been a perfect traveler.

Tomorrow we will meet my sister and brother-in-law and head to Sanibel Island for a few days. We are looking so forward to relaxing on the beach, shelling, and enjoying some sunshine. My mom lives on Sanibel so it will be an extra special time for Kyle, seeing Aunt Katie, Uncle Kenny, and Nanny all at once! I suspect he will undoubtedly be the center of attention.....

Thank you again for keeping Kyle in your thoughts and prayers as we take this trip. I have put a picture of Kyle kicked back in "his room" in the photo album. More tomorrow.

Hope you all had a nice Thanksgiving!

Fondly,

Claudia

Friday, November 23, 2001 at 10:30 PM (CST)

Sunday, November 18, 2001 at 03:49 PM (CST)

We are all so incredibly overwhelmed and touched by the number of visits Kyle's webpage has had in just one week! Thank you so much for taking time to stop by.

As we said before, Kyle has been granted a trip to Disneyworld by The Dream Connection. We are all very excited about taking a vacation that has absolutely nothing to do with a hospital visit! Kyle has had some wonderful opportunities to travel to several exciting cities but there was always one catch: the trip revolved around a hospital stay. He loves the water taxis and crabcakes in Baltimore and saw Cal Ripkin play at home there once(Kennedy Krieger Institute/Johns Hopkins), has seen Cleveland change stadiums over the years(The Cleveland Clinic), got to ride a water ferry and tour the Skydome in Toronto (Hospital for Sick Children), and thinks the Atlanta Braves are tops (Scottish Rite Children's Hospital). But this trip is going to be purely for fun!

We will be leaving this week so I will update again on Thursday and hopefully every day while we are gone. We are so grateful for the many, many notes and cards and letters and phone calls and thoughts and prayers you have sent our way over the course of the past 14 years and we want you all to be able to share this once in a lifetime vacation with Kyle.

More details on Thursday! Have a wonderful Thanksgiving and thank you again for coming by.

Claudia and Lynn, Rick and Peggy

Sunday, November 11, 2001 at 02:30 PM (CST)

Welcome! Thank you for visiting Kyle's website! We hope you will visit often. As most of you know, Kyle has had a lifetime of medical issues, far too many hospital visits to count, and yet despite the many trials and challenges has always maintained a positive, happy attitude. Those of you who have been blessed to know him personally know firsthand of his loving spirit and his precious sense of humor. Kyle is such a gift and he continues to teach us all SO many lessons about life, love, and hope.

I won't go into Kyle's lengthy medical history just now but as we add to his journal, some of it will be included at times. Please feel free to ask us any questions, anytime. If you have a chance, we hope you will visit the links we have provided to learn more about two organizations that have played important roles in Kyle's life: the United Mitochondrial Disease Foundation and the Epilepsy Foundation. In visiting these sights, you will learn a bit more about Kyle too.

Again, welcome. Thanks for stopping by and do come back soon! In the meantime, please keep Kyle in your thoughts and prayers.

Up next: Info on Kyle's upcoming trip to Disney and Give Kids the World (our third link) compliments of The Dream Connection!

Claudia

Click here to go back to the main page.

----End of History----