History

Wednesday, February 9, 2011 1:46 AM CST

Ok I don't know if anyone still comes and checks for updates but I need to write. Sorry if what I write bothers anyone.

Most days I do pretty well with Justin being in heaven and some days like now I hate that he is gone. I get a little mad that life had to get turned upside down and he was ripped from my arms by a freaking horrible disease. Alper's sucks!!!! All I want is to hear his voice and make him laugh. I want to give him his meds and feed him cheese and crackers. I want him to ask me to take him to IHOP so he can have a pancake he won't eat. Oh and the chocolate milk he loves so much.

Why did I have to lose my son? Why do I have to be the one who has empty arms? Why does missing him hurt so bad? I am so freaking mad!!!!!!! I want him back!!! I want to hold him again!!!! I want him to go to school and me look forward to getting him off the bus!!! I want to clean up his puke and change his diapers. Give him bubble baths and let him play in the water.

I miss my scooby :(

I know you may say he is not suffereing anymore and that he is finally whole and healed but I wasn't ready for him to go. Here it is 15 months later and I still feel sad he is gone. I don't cry every day and I do laugh and am doing things to move forward but I would give it all back to have him with me.

uuuuugggggghhhhhh I hate Mito! I hate that it robbed me of my son!!!

JUSTIN I LOVE YOU!!!!!!!!!!

Wednesday, September 8, 2010 2:34 AM CDT

Time has sure flown by.

I am mostly just on facebook now instead of Justin's site. It is hard to believe we just hit 11 months since he flew to heaven.

Some days I just miss him so much my whole body aches for him. How I miss touching his cheek and kissing his face all over. He was such a sweet, mischevious little boy.

School is going pretty well and am grateful to have an opportunity to reach my goal. I was going to school to just get my RN in nursing but have since decided to go for my Nurse Practioner so I can be more like a doctor. I still want to work with Kids and may lean towards Mito kids too.

I hope you all are having a wonderful day and enjoyed your summer.

Saturday, May 22, 2010 0:01 AM CDT

school is going so much better this quarter and I really love my CNA teacher. I wish I could just hang out with her all the time!

We are coming up on 8 months since that sweet little boy of mine grew his angel wings! I miss him so much.

I am getting ready to do some landscaping around his tree at the firestation. we are building a wall and a nice flower bed around it. I am so excited to get it done.

I am not really sure if anyone comes here anymore but thank you for keeping us close to your heart.

Time for me to get ready for bed. I have a long day tomorrow.

Wednesday, April 7, 2010 2:05 AM CDT

6 months and 3 days ago you flew to heaven. I miss you with all my being. My arms ache to hold you again. I keep going forward but it is not the same. I miss your sweet smile and your contagious laugh. ugh don't know what to say. I am mad you are gone but relieved you are not suffering anymore. THIS IS SO NOT FAIR !!!!! I love you to infinity and beyond!!!!

Justin you sweet sweet boy are a beautiful angel!

Tuesday, February 16, 2010 3:38 PM CST

It has been way too long since I have posted here. I have started school and it is going ok. A little challenging while in this grieving process.

I am not even sure if anyone reads this site still but I will keep it for me to remember all I have walked through with my sweet boy.

I sure miss Justin and all the smiles he would give us and even all the frowns. I always knew when something wasn't quite right. I miss taking care of him.

Next quarter in school I will be taking my CNA class and math 101 of my prereq's and also a pe class too. I wanted to stay full time but lessen the load a bit from this quarter.

I hope you all are well and hug your children for me!

Thursday, December 31, 2009 3:16 AM CST

Wow time is really flying. School starts on January 4th for me and I can't wait.

I have had a really hard time getting into the holiday spirit. I am so glad it is almost over. When we got our tree it took a week to get it all decorated. I am so ready to get it out of the house. I did however two days before Christmas go and decorate his tree at the fire dept we planted. I sat at his tree and just cried.

I really don't know what to write now. Weird.

Thursday, December 3, 2009 4:53 PM CST

I am guessing maybe I should let you all know how I am doing. I MISS JUSTIN!! I am so mad that I can't hold him in my arms and kiss him everyday! I know everyone keeps saying he is in a better place and not hurting anymore but I can't believe he is better off without his family holding and loving him everyday.

We are working on having Ryan move back home with me. We need each other and I love having him around.

I start school in January and can't wait! Everything is coming together slowly but definitely. I am going to start volunteering with Justin's class some and also I wan't to help in Miss. Lilly's class with kids who need help reading. It is hard going to the school but so very rewarding to see Justin's friends like Danielle and Jake.

I am working on cleaning out some of Justin's medical supplies. I think I may keep one of everything and put it in a special box. I found that the Union Gospel Mission will take some of this stuff. In our area they help needy people with medical help when they have no insurance.

I know that I want Justin's stuff to go to people who are in need. He was sent to me for a purpose and I am here to help him fulfill his purpose.

Tomorrow marks 2 months since he passed and my friend and I are going to plant flower bulbs around his tree at the fire department. This may sound crazy but I was thinking I should bring a scarf to put around the tree so it doesn't get cold. Justin's urn is wrapped up in two of his blankets and in my bed so he doesn't get cold. I have to sleep with him everynight so I can hold him.

Well that is enough depressing news so I should go now.

Karen

Friday, November 6, 2009 2:46 AM CST

HAPPY BIRTHDAY MY SWEET BUTTERFLY IN HEAVEN!!!

It is hard to believe you have been gone for 1 month and two days. The pain still feels like it was yesterday. I know that part of me is so happy you are not suffering any more but how I so long to hold you in my arms and kiss your sweet face!! We are going to go to IHOP for dinner and have pancakes just for you!! I don't like them but you would want them and I will eat them just for you!! I can still hear your giggle in my mind and your wonderful sense of humor. I miss you so much!! I promise I will make you proud and honor your memory everyway I can! I love you my sweet man!! Justin you are so awesome!! Ryan misses you too!

I will send you a balloon to heaven today. I will get you a black one since that is your favorite color!!

Love you forever!
Mom

Monday, October 26, 2009 3:24 PM CDT

Sorry I haven't updated in a while, but what do I write. I miss my son and my arms ache to hold him again. I want to smell his hair and I want to see his smile and hear his laugh.

Everyone keeps asking me how I am doing and I know they care and mean well but it is driving me crazy. I guess because I don't know how I am doing. It is confusing. I am still doing normal stuff and yet I feel empty and sad. I tell everyone I am okay but how can one be okay after losing such a precious gift?

Ryan and I are together more now. He is staying with me more. I hate that he had to lose his brother. They were so close and Ryan was the best big brother to Justin.

I am getting a tatoo this Friday. I have been wanting to get one for a while now in Justin's honor now in his memory.

I found this quote "Just when the catapillar thought it was the end of the world, It became a butterfly" ~Proverb. I am getting this quote and a butterfly that is black and yellow and the blue part of it I will make green so that it is Justin, Ryan and I's favorite colors. I also will ahve Justin's name and his b-day and day he passed on there too.

Got to run but will try to update soon.

Tuesday, October 6, 2009 3:59 PM CDT

Thank you everyone for all the prayers and hugs.

I miss my son so greatly it makes my heart pound so loud and so heavy.

His services will be on Sunday October 18th at 4pm. They will be held at the McLane Fire Station located at 125 Delphi Rd NW, Olympia, WA 98502. There will be a tree planting ceremony at the fire station following services.

I can't tell you how much it comforts me to know you are all there for my family.

Much love to all of you,
Karen mom to ^Justin^

Sunday, October 4, 2009 1:01 PM CDT

^Justin Kase Brubaker^ is free from pain and his earthly body.

Information on services will be posted soon.

Sunday, October 4, 2009 1:43 AM CDT

Thank you all for such wonderful prayers and comfort. I am scared with every breath that it is his last.

His Kidneys have shut down and he sounds like his lungs are filling with fluid and he is not swallowing secretions. today we made the difficult decision to turn down his IV fluids and just run enough to support the pain meds through the veins.

Right now his dad is snuggling with him and I will go back in to snuggle him in a few. I want his dad to have some time before they head back to their hotel room. Ryan and I will sleep with my sweet Justin and hold him all night.

UUUUGGGGHHHH I just want to hear his laugh!!!!!!!!

Karen

Saturday, October 3, 2009 1:16 AM CDT

I am so very sad tonight. Justin was admitted back to children's and he is fighting to be here with us. He is on 3liters of oxygen and quite a bit of the dilauded, he has been having blood drain from his g tube into the farrell bag. We had to go back over his DNR and also his autopsy paper work so they can harvest for Brain and tissue donation once he is in heaven. Such a difficult process right now.

I pray he stays comfortable and finds joy being whole in heaven.

Please keep him in your prayers tonight.

Karen

Wednesday, September 30, 2009 1:17 AM CDT

We are adventuring home tomorrow. With Hospice finally in place and the changing of infusion supply companies it has been crazy trying to get my son home where we can enjoy his time with us. I have been slowly watching him fall apart the last almost 10 years and now I am going to stop watching him fall apart and enjoy what is there. Lots of Hugs and Kisses!!

I look at him and think "he can pull through this, he has triumphed so many times before" Or "he doesn't look that bad" but really he looks terrible. I really only noticed how yellow he was when I started taking pictures of him and you can really see the difference.

My heart is saddened to hear that Brody another Mito kid passed away today. also in the room next to Justin and I is a family whose child was just diagnosed with mito yesterday.When will this end!!!???? UUUUGGGGHHHH I hate mito!!!!!!!!!

Please be part of the fight against this disease!! Donate for research, for treatments, for a cure!!!!

Love, Karen

Sunday, September 27, 2009 9:45 PM CDT

Quick Update:

Justin is in liver failure. He is being put on hopspice care and we are not sure how much longer he has. So since his Birthday is in November we are celbrating it next weekend with all our friends, family, caregivers, and community! I could not have walked this journey without any of you!!

Just pray when his time comes to go play in Heaven he is free of all pain and sickness.

karen

Wednesday, September 16, 2009 6:40 PM CDT

Things are about the same. Justin is turning more yellow by the week and he is sleeping lots. We got very lucky today when we took him in for his blood draw. While there we bumped into his GI doc and after talking for a moment she ordered an ammonia level on him and she is going to look into the Omegevan in place of the regular Lipids in his TPN. It is supposed to be much easier on the liver. Anything we can do to help his liver. We are also trying to do small amounts of formula through his J tube because that can help his liver too. I think part of all this is that his liver is already compromised from the Alper's syndrome and the TPN is aggravating it more.

So the other night I got a half smile out of Justin which just melted my heart. I also got him to try a small bite of watermelon and mozzarella cheese. When no one else is here I act really silly to try and get him to smile or laugh and most of the time I just get a funny look from him. I MISS HIS LAUGH AND SMILES!!

Quite often I crawl up in his bed with him and we sleep half the day away. I love snuggling with him. I keep hoping one day he will just wake up and start talking to me like none of this has ever happened.

Tomorrow we get to go see Dr.Saneto in Seattle!! He is Justin's Neuro/Mito doc. Maybe he will have some ideas on how to better manage this disease.

I will update after tomorrow or next week after our GI appointment.

Love, Karen

Saturday, September 5, 2009 1:20 AM CDT

Sometimes I really hate having to write bad stuff. It is so hard to see the words as I write them. Justin's liver is not doing well. He is becoming jaundice, his liver is enlarged and his numbers are all out of sorts. What does this mean.. it means his liver is showing signs of liver failure.

We have decided going to Disney would be too hard on Justin, so what we would like to do is get my sister and her kids here for the holidays so we can spend them together. We could still use help with gas cards and if you need an address to send stuff too just ask and I will give it to you. I would really appreciate it. It would be nice to have us all together this year. We don't get to spend holidays together with my sister in Eastern Oregon. We usually see them about once a year if we are lucky.

I am so emotionally tired today. I think I am going to bed. I can barely type. I will update more after the weekend.

Karen

Monday, August 31, 2009 2:04 PM CDT

Hi All!!
Justin has had a really good morning. He was up playing with his nurse and tolerated his meds good too. Now of course he is back asleep and resting comfortably. The best news is on Friday he said "MOM" twice. I haven't heard that in weeks!!! I cried tears of joy when he said it.

Many people have asked how they can help us in getting him to Disneyland. I had to think about this because as much as I hate asking others for help this time we really need it. So above is an address for Justin's special account and you can donate to there or we could use air miles donated. Enough for three tickets(only Ryan, Justin and I will fly and everyone else will drive so my mom can transport all the supplies). We are going to try and put together a dinner fund raiser too. I am going to try and put together a yard sale in the next couple of weeks too. We are trying for November for a total of 6 nights because Justin's birthday is in November and it may just give us enough time to get him strong enough. My sister and her kids are going to drive down from eastern Oregon so we can do a Family Vacation with him. Gas cards are also welcome to be donated. we are planning to stay at the Ramada Maingate hotel because it is cheaper and right across the street. We are just looking at making this a special occaision for Justin to be with all of his family and not have to think about being sick all the time. Please let me know if you can help in any small way we would appreciate it.

I hope you are having a wonderful day and enjoying this end to summer!

Love, Karen

Tuesday, August 25, 2009 9:51 PM CDT

We are home and still adjusting. We have two nurses and we are covered everyday of the week 9 hours a day. I really like the nurses we have and are grateful they are in our home.

Justin is still fighting with the constant nausea and pain. I finally got him to say a word to me. He said "yea" when I asked him if he wanted to go see Mickey Mouse and Nemo. First word he has said to me in almost two weeks!! So we are going to try and make this happen for him. Of course we have to clear it with the doctors and get him stronger so he can go on the Matterhorn. He loves that ride along with Splash Mountain. He is a thrill seeker. So our only problem is money. But we are palnning to do some type of fundraising. We are brainstorming right now to come up with the plans. We want my sister and her kids to go too, plus we should bring his nurse too.

I just realized the time and I have got to go start his meds for the night!!

If you all have any ideas for fundraising let me know. After all he has been through and seeing such a decline in him this is so important to us.

With Love,
Karen

Thursday, August 13, 2009 0:22 AM CDT

Justin is being discharged Thursday afternoon. As soon as his TPN arrives and all the pumps and meds are filled from the pharmacy we are hitting the road!! We are picking up a new fridge for his room for his TPN because the bags are gigantic now. They added an extra 1000cc to it because he is losing that out his gtube. We will also have IV nalbuphine for pain if needed and IV zofran for if he throws up the dose given through his j tube. He is on Zofran around the clock now becasue he is constantly nauseated. He alos is not eating anything by mouth and is not talking much. We get one word every few days from him but he is smiling and laughing. We had a squirtgun vs silly string war in his room the other night and he loved getting covered in silly string.

Packing up his room tonight was hard because after two and a half months you have a lot of stuff to take home!!

I can't wait to see Ryan and my mom and of course all the pets. My mom's dog is pregnant and I just want to see her fat belly. There is at least three puppies in there.

Well I guess I should get some sleep since tomorrow is a busy day. We also have a home nurse starting on Friday morning. This shall be interesting.

Hope you all have a wonderful day and keep the prayers up that we get to stay home for three months this time!!

Karen

Monday, August 3, 2009 2:44 AM CDT

I had wrote out this update yesterday and then the computers crashed for a while.

Okay so in a nutshell Justin got real bad and he is now starting to recover. He is extremely tired and you can see it in his face. His Platelets dropped to 26(norm is 200-400) almost needed a transfusion. His liver numbers have been all over the place, low WBC counts and no positive cultures. His platelets are coming back up his liver numbers are slightly decreasing and we don't have a clue as to what was going on with him. He looks pretty gray at times and is needing meds for pain since he can be pretty miserable. Last Wednesday we filled out a DNR(do not rescussitate) order and that by far was the closest to this reality I have felt.

I am going to interview nurses this week becasue we won't go home without one. I am also going to have pictures done with Justin by Solumation too and we are going to do hand molds too.

I know Justin is creeping back towards the better side but we need to have this stuff before it is too late.

I am so grateful for the wonderful team of doctor's we have here and brilliant minds working together. We are so fortunate!

Please feel free to call us or send e cards 206-987-2000 rm 1275 Justin Brubaker.

Karen

Wednesday, July 22, 2009 1:15 PM CDT

Lots has ben going on but really no way to write about it. It feels like if I write it down then it is real. I know sounds weird. Especially because I am living this and that is real enough as it is.

Justin is putting out anywhere from 1000cc to 1300cc of bile out his gtube every day. we are running replacement fluids along with his TPN, also he has been having pain from somewhere and all tests are coming back normal so far. He is having more labored breathing but now we think his right lung is having decreased breath sounds in it. He will get a chest x-ray today to see what is going on.

I think I am ready to stop searching for ways to fix him and just live with what we have and let him just be a kid and keep him comfortable. He looks so tired and I only want him to be happy. He is being kept pretty comfortable with meds right now. Not narcotics but meds that won't slow down his GI tract anymore than it already is.

I need to get back to our room now and play with my boy.

Karen

Sunday, July 5, 2009 1:21 AM CDT

It is actually 11;20 pm on the 4th of July. We are still at Children's and Justin had surgery yesterday. What you say???
See I really need to update more frequently.

So at our Care Conference it was decided to do an upper GI with small bowel follow through. Their idea was to use a G-J tube to do it and I said that they should do it with out putting in a g-j tube and just use the g tube to get a better reading and so they agreed with me. Well from doing that it lead us to surgery. They thought he may have malrotation of his duodenum but when they went in they found a hairpin turn in his duodenum and it was in a serpintine position and it should be more like a c. So they straightened it out and tacked it down moved his small bowel to the right and his colon to the left, took out his appendix since it wouldl be in the wrong place and they put in a new g-J tube. We are hopeful we will be able to do tube feedings again. Yeah!!! That means we may be able to get him off tpn or reduce the amount he needs.

We are here for at least another week or so to get his gut moving again. Pray that this surgery worked.

I am off to go finish my laundry now so I will update later this week!!

Happy 4th!!

Saturday, June 27, 2009 0:40 AM CDT

I think I already updated that we are back at Children's. Well we are stil here and yesterday he had a Endoscopy done to figure out if there was treatable reason for all of his issues we are having now. They could not SEE anything. We are waiting for the biopsy samples to caome back but we don't think they will show anything either. We are left with his disease progressing. His motility is getting worse and worse. Without good motility it really can compromise ones life. We are seeing that more and more in Justin. It is taking us hours to get his meds in him. we have to do 3cc at atime and clamp for ten minutes then repeat that until we get half his meds in him then with a small flush we then wait 20 minutes and have to drain toa farrell bag just so he won't over load and throw up.

I have been crying alot the last two days. I am emotionally drained.

We are getting a pass on Sunday to go to the zoo here in Seattle though so that should be fun. I can't wait!We have to go see the new penguin exhibit!!

I am going to go to bed now and try to get some sleep.

Tuesday, June 23, 2009 4:40 PM CDT

We got to be home two days and now are back at children's.

Tummy issues again!! Or should I say still. They pulleed his g-j tube and placed a plain old g-tube and are hoping to decompress his duodenum. His j tube was curled in there as far as they could tell and could have been causing all his recent issues. should know more in a day or so.

206-987-2000 room 3007 if you are up to calling.

They also gave him ativan last night and he gets obnoxiuos on it so today has been a challenge.

I am ready to go home and stay home.

karen

Sunday, June 21, 2009 3:21 AM CDT

Justin was discharged Friday and we got home around 8pm. We were so happy to get home but for me after being there for those 20 days it is like culture shock. Sometimes I feel more comfortable in the hospital setting.

So he is still draining lots from his g-tube and that may never change. Today though it has taken us two hours to give meds because he keeps vomiting everytime you push a med in no matter how slowly we go. Frustrating to say the least. He must be so tired of being sick like this. Praying for a better day tomorrow.

I had Ryan here today helping with Justin so I could unpack (yes I am unpacking) and settle in to home. It has been a challenge to stay on task I just want to hang out with Ryan instead since I hadn't seen him in a while.

It is 1:30 am and I am ready for bed. I need to go change Justin and empty his farrell bag first.

Enjoy your Sunday and the coming week!!

Karen

Thursday, June 11, 2009 0:58 AM CDT

Okay a few minutes to update.....

I think I posted about Justin's line infection and he grew four bugs in his line, one being yeast. With Yeast they had to pull his line and so last Friday after three days of negative cultures he went in and got his PICC line in his arm. So since he was in Interventional Radiology already and sedated I thought a perfect time to change out his G-J tube because it has been leaky and the white port thinga-ma-bobs(for lack of the correct name for them) were spinning and shouldn't be. Anyways while changing out the tube they found a gastric volvulus which is a 180 degree twist in his stomach. They can be very dangerous but they were able to manipulate it and undo it without surgery. The consequence tothis was his gut shut down for a few days which is called an ilieus. I am happy to report his gut has woke up and and he is able to eat very little. The bad news is it put him in an energy crises. He is still weak and tires very easily right now. We are staying here at Children's until he is done with the antibiotics and he will get his new central line placed next Tuesday and we will go home wednesday as long as he does well after anesthesia.

I am getting nervous as I start school on the 29th and with all that we have just been through I am thinking I will have no fingernails left.

So there it all is in a nutshell. I hope you are all doing well and enjoying the summer weather creeping upon us.

Will update most likely after we get home unless we have another setback. Pray for none of those!!!

Love to you All,
Karen

Sunday, June 7, 2009 4:35 PM CDT

Still here in Seattle!!

More issues and hoping to get them better soon. We are now just going to be here until he gets his new central line.

Keep him in your prayers please for a quick recovery from all of this. I will update more later right now I am going back down to see if he is still sleeping.

Have a wonderful day!!

Karen

Thursday, June 4, 2009 0:51 AM CDT

I should have updated this days ago but I have been preoccpied. Justin is back inpatient at Children's with a line infection. I beleive he grew 4 bugs and so they pulled his line Tuesday night. I am frustrated with the peripheral IV and his hands that are so busy trying to mess with it. We are getting better at keeping him occupied but we will see what tomorrow brings. He has to ahve three days of clear cultures before they will palce a PICC line and have two weeks of antibiotics from Tuesday to place another Central line. GRRRRRR......

I am off to go hang with Brit outside while he is sleeping and get some much needed me and friends time.

Karen

Thursday, May 28, 2009 4:27 PM CDT

Time has just flown by!!

Justin has been pretty busy and time consuming for me.
He constantly says he is bored but I am not sure how when he is always playing with toys and we are getting out more often too. In the last month he went to his friend Tessa'a birthday party, we went to see Sesame Street Live, he has been to his friend Aiden's birthday party at the roller skating rink, and we went to the car races. My favorite was skating with him by far. He loved being pushed around the rink in his wheel chair. He would throw his arms up in the air and scream "whoo hoo" so of course I would have to go faster and he would just laugh! Awesome!

Justin is really having a difficult time right now emotionally. He is fine one minute and crying or screaming the next and just on a rollercoaster of moods. I hope by adjusting his meds it will help. He is 62lbs now and holding steady there. He is having seizures almost every day and that could be the cause of all of this craziness. We shall see.

I am going to go enjoy the last last hour and a half before he gets home from school and the mood swings begin.

I do have to say I am amazed at how much I love the TPN. I was so afraid of it to begin with but I have my boy back and he is so much fun to take places too. Or he will be again once we get the moods under control. I love watching him play with toys and he is getting his fine motor skills back and he is not so tremory in his hands. All so cool!! I think when I bocome a nurse I want to do infusions with kids. Maybe even be the one to talk with parents when they have to make the decisions to do TPN and all of that. That is still a few years off but soemthing to think about.

I start school on June 29th. I am doing the pre-req's for nursing!! That will take several quarters though and I am in no hurry. Justin will always come first!!

Take Care!!

Friday, April 24, 2009 10:04 PM CDT

60.2, no this is not the temperature outside or inside for that matter. It is how much Justin weighs as of today! My jaw about hit the floor when she told me how much he weighs. I knew he was getting heavy but not that heavy!LOL!!

He is doing well just watching him closely for fevers and such. He pulled the dressing off of his central line the other day and that is a infection invitation!! He usually leaves it alone so it surprised me to find the dressing laying in his bed.

It has been a long day today. we went to Seattle for a nutrition folow up and we got to see my friend Britt whose son is still in the NICU. We met on my birthday at Children's and she is just awesome!! I was so happy to see her!

I think I am going to check on dinner and get to bed early. Justin has a birthday party to go to tomorrow. His friend Tessa is ahving a party and he really wants to go.

Have a great weekend!!
Karen

Sunday, April 19, 2009 6:19 PM CDT

I just had to share this picture I took of this painting my sister had done for me. I gave her a picture I had of him and she sent it off and had a painting made of it. Isn't it awesome!!!!!!! I just got it on Friday!! I love it!!!

Justin is doing well and very happy. He has a blood draw this week and a nutrition appointment. Such an easy life right now.

Justin and I went down to Pope's Kids Place in Centralia last Tuesday to do our intake appointment for respite weekends. It was awesome and such a nice place. They have to get trained on his TPN and then they can have him there. He should be able to go one weekend a month. Also soon they are going to be open for respite 24/7 so in August when it comes time for the campout he will be able to go for all the days I am gone. there is no way I could take him up camping and keep his stuff clean and sanitary. So this will be an awesome place for him to go. To check it out you can go to www.popeskidplace.org it is really cool.

I hope you all have a wonderful week!!

Karen

Saturday, April 11, 2009 10:14 PM CDT

Happy Easter!!

I guess no news is good news!! We have been home three weeks now and life is good! I am so glad Spring Break is almost over and Sir Talks Alot can go back and ask his teacher all the mind boggling questions he asks me all day long! Yes, Justin is earning himself many nick names nowdays like Human Torando, Mr.Grabby Hands, and Sir Talks Alot is by far the most used.

He did throw up this morning and slept all afternoon but he is now awake and in good spirits. He was just getting mad at Ryan for something Ryan did not do. At least Ryan knows not to take it personal.

I thought I would update since it had been a while and today is a pretty mellow day. I hope everyone enjoys their Easter Sunday.

Karen

Saturday, April 4, 2009 5:41 PM CDT

I had to figure out how to update his page since Caringbridge made changes.

So we have been home for 15 days and all is going well. He is talking up a storm and his smile is lighting up the room. It is nice to hear him laugh again and joke with me. He is getting stronger and heavier. I love seeing him so strong. I think he wants to try and stand up sometimes. It has been years since he walked. What a miracle we have here.

Justin has been back in school since Tuesday and was loving going to school! We changed the times he goes to school to later in the day and he and I both like it. It takes me about two hours to get him ready to go anywhere. His meds have to be givien really slow or he throws them up and we also have the TPN now to work our schedules around. We are making progress.

Justin and I were talking last night about going to church. We both want to but need to find the right one for us. I have a strong belief in God through my recovery,but it has been years since I have taken him to church. I think that is one thing I will focus on in the near future.

Anyhow I need to get busy and set up his play room and shampoo carpets in there so he can play. He is really busy now!!!

Take Care,
Karen

Monday, March 23, 2009 9:14 PM CDT

I have been meaning to update but have been super busy with trying to really get settled this time. We are home and have been since Friday. He is doing great and I can't wait to be off of the antibiotic schedule. I am aiming to start tryiong to get Justin out of the house and how to manage his TPN and outings.It is way harder than just tube feedings.

We are having issues with behavior right now but hopefully that will get better.

I have go tto get going and get things done.

Love you all and will update soon!!
Karen

Friday, March 20, 2009 0:27 AM CDT

SHHHHHHHHH the word around here is we are going home tomorrow and not Monday!! I got trained on how to give the antibiotics through his line and so all we ahve to do now is wait for the supplies to arrive tomorrow and we are outta here!!!

I have some projects to work on like adding snaps to his pajamas so he can't get his hands into his pullups. Anything to protect the line. So if anyone has experience with adding snaps to clothes let me know. I have never done it but have the the stuff to do it.

I think I am going to head off to bed it will be a busy day tomorrow getting everything ready to go.

Love,Karen

Thursday, March 19, 2009 1:31 AM CDT

I hear the earliest we will check out again would be Monday. So if it comes sooner I will be thrilled. Wishful thinking I guess. Don't get me wrong we love the care Justin is getting and the nurses are awesome but it is time to get back to a normal schedule. I can't remeber when Justin went to school last or anything like that. Was it before the snow in december? Me taking him to the school doesn't count.

Today was just an emotional day for me. I just want things to be the way they used to be. When he was little and would play with ryan and they would fight with lightsabers. He would play with toys and could run and play outside with just supervision. He had chubby cheeks and you couldn't see his ribs. He would play with other kids and loved to swim. I miss those days. Though these days he has the sweetest smile and his laugh is infectious. He likes to throw balls and make people laugh. He has his own language sometimes when he is being silly. He gives the best hugs and kisses. He is starting to show signs of a double chin. He truely cares about his family and the people in his life. He loves to look at books and put together puzzles. so even though I miss the old days I enjoy the days that are here. Memories are great but you can't have them with out making them.

I can't wait to take him back to school so he can see all of his friends and teachers. He was ready to go back to school before this infection hit. He has been very upbeat and mornings are actually his best time of day now. Bummer for me, I hate mornings. Never have been a morning person. I am learning though for my son. This TPN schedule will have me reformed in no time.

Well it is time to go check on my laundry and go to bed. It has been a very long day.

I miss all my friends so much and I cannot wait to get home to see all of you! All I can say is we have got to put on a dance soon!

Love,
Karen

Tuesday, March 17, 2009 2:12 PM CDT

Justin is back in the hospital with a central line infection. The one thing we didn't want we got. We will know more in a couple of days if they need to remove the line and replace it.

I am exhausted and in need of food. I will update later.

Karen

Friday, March 13, 2009 11:15 PM PDT

WE ARE HOME!!!!!!!

What an adventure the last few months have been. I am too tired to write too much tonight but am so grateful for all of the support.

Tomorrow will be spent organizing all of our supplies and Justin's two bedrooms! Yes I said two bedrooms because that is what he needs right now so we have one room with all of his medical stuff and where he sleeps and the other will hold all of his toys and books and stuff like that. So far two of my friends are coming over to help but any help is appreciated! I am going to get started around noon and if you want to come help just let me know.

I am off to get my rest for the big day tomorrow!

Love,Karen

Wednesday, March 11, 2009 10:26 PM CDT

We have officially been here 3 weeks and one day. What a journey this has been. While there were some tough decisions that were made all in all they were the best decisions that could increase his quality of life.

This Friday we are checking out of our comfy room here in Seattle and headed home. Home on a new plan and feeding schedule. More care and all will be needed. However I am ready to rise to the challenge! This Mito beast has not won and cannot take away our spirit to fight with all we got! Justin and I are tough and we are not rolling over and giving up! He was so silly today and talkative! His teacher would have loved his spunk! We have our Justin back! I knew he would come back! The right nutrition is what is doing the trick!

He is going home on the TPN 16 hours a day and feeds run at 10ml/hr for 16 hours and he can eat whatever he can and wants to by mouth that is if he chooses. Mostly he chooses not to eat anything. His meds have to be given slower and all but that is just how it goes when your gut is trying to shut down.

I hope everyone is having a wonderful week and I will post as soon as we get home and get settled!

Love,
Karen

Sunday, March 8, 2009 9:11 PM CDT

It is Sunday and the days are melting together. It has been decided that Justin was passing Kidney stones and we are now going to do the CT scan hopefully tomorrow. But because of this it has shut his tummy down more so we had to stop feeds through his jtube to give him a break. Hopefully we will be able to start them back up slowly to get his gut moving again.

I think he just likes hanging out with all of the nurses. I mean he flirts with all of the younger ones. He is definitely an 11 yr old boy in that manner.

I am grateful these docs are taking their time and not sending us home too soon. When we get home I would really like to stay there for more than ten days. Justin has had nothing but the best care and I am so happy we have an awesome team!

I am tired and ready to go back downstairs to hang out with my boy. His dad leaves tomorrow so right now they are having some bonding time. I am giving them this opportunity to be together so I don't want to intrude right now. I guess I will go find my friends up here and see if they want to go for a walk or something.

I hope you all have a wonderful week and I will update as I know more.

Love ya,
Karen

Saturday, March 7, 2009 0:35 AM CST

Ugh I just had written a bunch and lost it so here it goes again.

Justin got his central line on Tuesday, and started TPN that night. So far that is going good and I am glad about that. also he is getting his feeds at about 30ml/hr in his J tube. We are still having issues with quite a bit of output from his g-tube. that may never change. He is still having issues though with getting his meds and not throwing up afterwards. we give them through the J tube but they still make him throw up. Yesterday he started peeing blood. Not a little blood but lots of blood. Tonight not so much was there but there is no sign of infection and we are looking into his kidneys and for kidney stones. So far nothing but they want to look at his pee under a microscope tomorrow plus get some labs.

I have been doing the training for the TPn and I have to admit it is scary! There is so much to remember at first but I know after a while it won't be so challenging. You have to remember what needs to stay sterile and what just needs to be super clean and what not to touch where and to clean with alcohol wipes everywhere for 15 second and let dry for 15 seconds. Okay just mostly at the connections and when you are mixing the multivitamins into the TPN and all that fun stuff.OMG I am worried I will forget something and her will get an infection.

Tomorrow should be a relatively relaxing day for us except his dad is here and so not always relaxing. However he is making him laugh and that is what he needs too.

Sorry this is short and blunt but I am ready to hang with Brit and talk. Maybe we will cruise the halls too and get some excercise.

Take Care,
Karen

Wednesday, March 4, 2009 2:54 AM CST

We were able to do the central line today and it went very well. They started running his TPN through it and he was in good spirits tonight. He actually ate real food tonight which he has not wanted to do for a long time. He had a fish stick, two bites of cooked carrots, and a few bites of some mac and cheese. Not bad! He hasn't wanted real food for a while so I was very happy. I guess you just have to put him under and do surgery to get him to eat. Just kidding if he didn't have to go through this I would not have agreed to do this. He is having a hard time sleeping tonight so I imagine he will be very tired tomorrow.

I on the other hand have slept all evening after I fed him dinner. This has really taken its toll on me but I am really reaching out to God and strengthening my connection and faith through all of this. That is what will make me stronger. I think i could finally let my guard down knowing the intervention we are doing will help him and he will get stronger now.

I am going to go back to bed and go home so I can get a little OC on my house before I bring Justin home.Looks like discharge target date is for next monday.

Love youall,
Karen

Tuesday, March 3, 2009 1:17 AM CST

Justin is getting his central line tomorrow that is if he stops throwing up. Rough night so far tonight. He is going to go home on TPN soon.

I will update more tomorrow. Please pray he is okay by morning.

Karen

Sunday, March 1, 2009 0:02 AM CST

Saturday Night. 10pm 2/28/09

well I am not doing a very good job updating this page. Justin has been pretty stable for his situation. His output is slowing from his stomach but could be due to his feeds being turned down to 30cc an hour and we started him on TPN through a regular IV but that only lasted a few hours the first night because he decided to pull out yet another IV. Then this morning we got another put in and it went bad within 12 hours. so now we are only running feeds 24/7 and giving boluses of water every so often. I hope he does well until Monday after our care conference. I think no matter what though he needs to have aline put in because he is running out of veins to poke. We will see what his tummy does as we advance the rate of his feeds for the weekend.

Today Grandma and Ryan came up to visit. he was very happy to see his brother. It was awesome for me to see my mom and we got to get out and go shopping for a while. After we got back Ryan and I went down to the cafeteria and spent some time together. I wanted to find out how he was feeling about everything going on with Justin. It was a great talk.

If you would like to call us the number is 206-987-2000 room 2149 Justin Brubaker.

I hope you all have a wonderful week and i will update after our care conference on Monday.

Love,
Karen

Wednesday, February 25, 2009 0:15 AM CST

So it is Tuesday night and Justin is sleeping and I escaped the room!!LOL!!

So Justin is still having a large amount of drainage from his g-tube and the Gi wants us to clamp it for four hours then drain 100cc then reclamp for four hours and keep repeating to see if we can manipulate his gut to moving it forward. So already on the first four hours we did this and he vomited after giving meds throught the J-tube. I know you are all thinking that if it is going through the J tube why is it coming back up. His gut just isn't being nice to him right now. So we will see what they say in the morning and go from there. I do know one of the next steps may be to try a drug called Octreotide which cannot be used for a long period of time or if worse comes to worse he will be put on TPN. I guess it all comes down to which will do the least amount of damage to his liver and have the least amount of issues. He is also having a huge increase in seizures in the last 36 hours compared to what he was having which was a;most none and now he has had about 7 or 8.

I HATE MITO!!!!!!!!!!

I feel completely powerless and no matter how much reading and talking to others it relieves me for a moment; but being in the middle of this my heart sinks and I feel empathy for my child going through all of this and knowing I cannot stop this disease sucks!

Last night when his nurse came on he looked at her and said "I love You" to her. He has never seen her before and was totally smitten. yesterday we were cruising down the halls and he was singing "I have an IV" as loud as he could. He is cracking us all up. I will have to remeber some more funny stories but my brain is fried right now!

Love youall,
Karen

Monday, February 23, 2009 1:11 AM CST

It has been too long since I updated.

Justin in still inpatient and do not know when he will be released. He still is not tolerating feeds well without a high stomach output. Tonight they are doing a bowel cleanout in hopes that solves the issue but not sure it will. There will be a consult with GI in the morning or sometime tomorrow and see where to go from there. All I can say is tomorrow should hold more answers.

He is definitely getting his spunk back. He had been trying for two days to get his IV out and he was successful this morning and pulled it out himself! He has his laugh back and by boy I knew was there is showing us he is not out yet! He is a fighter!

I am keeping this short and hope to report good news in the morning.

Good night!
Karen

Wednesday, February 18, 2009 0:45 AM CST

Okay the date is really the 17th at 10:45pm.

Justin is back inpatient here in Seattle. He has not returned to his usual self since our last admission and over the last few days has had an increase output from the g-tube. He has become very dehydrated and last night started vomiting and would not respond to me. So we called 911 and he was taken to the local er where they poked him so many times trying to get an IV in him. at one point there were four of them poking him at the same time trying to get a vein. Finally they did and after a couple of boluses of fluids he finally peed a little and his color started coming back. It is so hard watching your child go through this and all I wanted to do was pick him up and run.

today he has been smiling and flirting with the nurses and the female doctors. He just smiles his beautiful smile and tries to giggle. So Precious. His hands have ben all over the lines and tubes and every button on the bed. So yes he is feeling better but not back to his baseline. tomorrow will be a better day and we hope to be home by my birthday on Thursday.

Yes I have to have another birthday and I will be 39. I am going to embrace my age because it is just a number and I definitley do not feel 39 and I do not look 39. No one can believe I am as old as I am, no wonder everyone gives me weird looks when I tell them I have a 19yr old. I love having good aging genes in my family. Both my mom and my dad have never looked their age either. I am hoping to get a tatoo for my birthday if I can find someone to do it inexpensively. I want a sunshine and to put Justin's name and date of birth in it and later there will be more added to it.

I am off to the room to maybe get a shower or just more sleep for now.

Have a wonderful week!

karen

Saturday, February 7, 2009 4:15 PM CST

WE ARE HOME!!!!!!!

We arrived home about 7pm yesterday and I am so glad to be home. I know Justin has a long road ahead to fully recover. He still has so little energy!

Okay so what we do know... Justin's hospital stay was most likely due to a virus, we know his motility is slowing down, we know this will not be his last hospital stay, we also know he is a fighter.

Justin is on Jtube feeds now for 19 hours a day. He is on a new formula called Elecare. It is a predigested formula so he will just absorb the nutrients and calories from it. He is also using the farrell valve gastric pressure relief bags as a vent and drain for his gtube. Last night he had over 350 cc of gastric output.

He has been occaisionally shown his sense of humor and made me and the nurses laugh while in the hospital. we just don't see the energy for that too much right now. He did smile when I held the phone to his ear and his dad talked to him. Not sure what they were saying but his dad is pretty silly so it had to be good.

Well I am off to start the laundry and dishes that have been sitting for over a week! I know it is not spring but we are in need of a good spring cleaning right now! One thing at a time! It is times like these that I wish I could be like Samantha on Bewitched and twitch my nose and it would all be done!! LOL!!

Well I hope you all have a wonderful weekend and hug your kids tight!

Love,Karen

Thursday, February 5, 2009 4:55 PM CST

Justin is perking up and goal is to be out of herre tomorrow or definitely by Monday. He threw up today and we are getting so much to drain into the farrell bags from his tummy.

I am getting ready to go back to our room and hang out with him. I am finally getting over my cold and then I won't have to wear these masks around the hospital. weare in an isolation room too because I have been sick.

Hope everyone is well and has a wonderful weekend!!

Karen

Tuesday, February 3, 2009 7:34 PM CST

where to begin. We have now been a Children's in seattle for 4 days. Looks to be another 2 or more days here. Justin got very sick and is now getting better. I am sick and really exhausted so I am not going to go into to much detail right now.

He ahd a gastric emptying scan today and his tummy is not working like it should and is most likely due to disease progression. We are working on a plan for feeding and nutrition in order to go home. I love our team here but I really miss my home and bed. and the dog too.

I need to go check on my laundry and get some rest. I am very lonely and Justin is sleeping alot so he is not much company.

please feel free to send him a egreeting at www.seattlechildrens.org I think that is it youcan google the hospital though and it will tell you.

Thank you all for stopping by.
Karen

Sunday, January 25, 2009 7:39 PM CST

Monday Night
Okay so this morning we thought Justin might be admitted because of his tummy issues and he was not doing well today but Dr.Saneto is great at coming up with a plan. We brought him home and ran feeds for a while then took him off to give his belly a rest and give more miralax. So we have been doing this today and so far so good.

He also told me he does think Justin has Alpers. One of the many Mitochondrial Diseases. He also said that his tummy issues are likely disease progression. So a challenging day in all.

That is all I can say right now and need to get sleep. Love you all!

Sunday,
Wow I guess it has been a while since I updated. We are just struggling to keep up with Justin's tummy. I am venting him often during feeds right now because he is just not moving things through very well. We should be getting some farrell bags for gastric pressure relief soon (thank you Erica) and they will help so I do not have to manually vent him every hour or so on tube feedings. we have also slowed down the rate of his feeds and he still gets distended. Luckily for us we have Pam and Dr.Saneto to help us through this. We are heading up to see Dr.Saneto in the morning and I feel hopeful. I know our GI feels his gut is just slowing down more(possible progression of his disease) and so we are having to change his diet even more. I am hoping for more help in all of this. This kid has thrown up four times in the last week from this. Today he has been very lethargic and he was this way on Friday too. Yesterday he was low energy too but more alert.

I am feeling very overwhelmed with the amount of meds and feeds and care he needs. Because not only does he need the medical and personal care done but then there is time to play and read and all of the other things to keep him entertained and frankly it is much easier to let him watch cartoons and movies after all of the meds and personal care stuff. However I do not want to miss out on an opportunity to spend time with him. I am trying to balance dating, and a social life in all of this too. Not easy but being a single mom is not easy and I need to take time for me. Besides I will be starting school in the spring.

Well it is time to go vent the boy again and read a story or two. We have to be in Seattle by 9:30 in the morning which means we leave at 7:30. We are not morning people so this will be fun! So off to read and bathe the kid and I will update again after our appointment tomorrow.

Love and kisses,
Karen

Saturday, January 3, 2009 11:08 PM CST

It has been a very tiring last two weeks. Between the holidays and Justin's constant energy and tummy troubles and all the snow making my depression flare up I feel drained.

I took Justin in on Friday for an x-ray of his tummy and it is full of gas and the doc doesn't really know why so we will see his GI on Monday and we are praying it is not because his motility is getting worse. I have hated seeing how drained he is plus he seems more floppy and unable to sit at all unassisted. Once in a while he has a good day and can but very few and far between. It has been exhausting keeping up with him the last two weeks.

I got to get a babysitter for New Years and went to a dance. I had a great time and was a nice break for me. I am looking forward to starting school too.

I pray all is well with everyone out there and please keep Justin in your prayers. We pray that his tummy troubles clear up soon and that we get good news from his GI doc.

Love you all,
Karen

Wednesday, December 17, 2008 7:29 PM CST

Snow, Snow and more Snow........

Today it has been snowing most of the day. It is so pretty and all but taking Justin out in it is not wise. He cannot keep warm even when it is 50 degrees out. So we sat inside all day and he slept for a few hours while I wrapped presents and sent texts to my friends.

Justin has a cold that is probably turning into a sinus infection as I write. I have been suctioning his nose but not making much progress. I hope it clears up soon. He has been a bear for the last week!!

I will definitely be starting school in the spring. That gives me time to prepare and get our ducks in order.

Funny story for you all...
We have a little dog named sparky. He is a shih tzu mix and is a sweet mellow dog. Okay that is until he sees a snowman. Now sparky loves strangers and especially kids but not snowmen. Our neighbors built a big snowman today and when I took Sparky out for a walk the snowman scared him. He barked and barked at this snowman. He growled, kicked out his back feet and woould not even walk anywhere near it. I had to drag him by it so we could get back inside. I have never laughed so much at my dog. Now if he would only protect us from strangers!! LOL!!

Well I had better get off of here and finish my sewing projects. They will take me a couple more days to get done but a week if I don't get busy now!!!!

Have a very wonderful Holiday season!!

Love you all and God Bless!!

Karen

Monday, December 1, 2008 4:20 PM CST

Sorry for the lack of updates but not much really to write about.

Justin had a wonderful birthday party and loved having his friends over.

He has been doing pretty good healthwise and I am so grateful for that. He had one seizure the other day and that is the first one I have seen in a long time. Only a couple of vomiting episodes this last month so we are doing great!!

I have applied to go back to school. I want to be a nurse. I am just waiting on the letter for the grants. I should start in the spring as long as Justin continues to do well.

We had a great and low-key Thanksgiving. Ryan and my mom came over and I cooked dinner for all. Justin really likes Thanksgiving dinner.

We are about to take off and go shopping for our household stuff for the month! I need to Christmas shop too but it is hard when you really cannot afford it! God will provide!

Thanks you for stopping in and I hope you all have a wonderful week!!!

Karen

Wednesday, November 5, 2008 4:29 PM CST

HAPPY 11TH BIRHTDAY TO MY SWEET BOY!

Tomorrow is Justin�s birthday and we are so thrilled! I cannot believe he is growing up so fast!

Justin, You are the light of my world and have taught me so much! I am so happy God chose me to be your mom! Everyday seeing you smile your cute little grin and those precious dimples makes me grateful for our life!
You have the best sense of humor and contagious laugh!
With all you have been through in your short life I am amazed by your bravery! You never complain about what you have to endure on a daily basis. I look to you and know that if you can do this so can I.
I love you more than words can say from now until infinity!
You are my sunshine!!

Love, MOM

I wrote this today as we are getting ready for a big bash on Saturday and I have got to get his beds switched out! We were given a hospital bed for him. Now we don't have to fight insurance on getting him a bed!

Take Care!

Monday, October 27, 2008 1:46 PM CDT

Okay maybe I should update. It is different with Ryan gone but we see him regularly. He bought Justin a pumpkin and when he came over Saturday night they carved it together. Justin actually pulled out the insides with is hands which is cool since he has never liked to touch it before.
Yesterday we got to go visit some horses at this barn my mom goes out to. There were a lot of horses. At first Justin didn't want to see the horses but once one came up to him and sniffed him and snorted he laughed and was able to feed them grass he loved it! There were also lots of friendly farm kitties and they loved him up too. It was lots of fun!

On the medical front.....
Justin was sick on and off all last week. He came home from school Monday throwing up and then Tuesday was okay and Wednesday woke up with a fever and Friday woke up throwing up again. I just kept him home all week and so far today I haven't gotten any calls from school. Hopefully we are over the hump but I am not sure that is going to happen until we can get a balance on running his feed and the emptying of his tummy. It has been a real struggle since school started for him.

Justin's 11th Birthday is coming up on November 6th! I am so grateful he is going to be 11! I am taking him down to see his dad next weekend and his grandparents too. That way I can drop him off and go visit some of my friends too. I am sure he will love seeing his dad. It is always hard though because he never wants to leave. I feel bad he cannot stay longer with his dad.

Well I better get off of here and get busy with the housework now that he is at school. He will be home in an hour and I have so much work to do.

Love you all and have a happy halloween!!

I will get some pictures of Justin in his costume and postthem soon!

Karen

Friday, October 3, 2008 6:53 PM CDT

Today is a day full of sadness and joy all in one. It is both because Ryan moved out on his own today. He has a friend and they are now roommates. I am sad because I just so enjoy his company and am grateful for his help. I will miss him being here every night. I feel joy because he is taking steps into adulthood and I am amazed at the wonderful man he has become. Our cat Oreo will miss his bed I am sure:) Also the dog won't be able to bed hop between our beds anymore:( Justin will figure it out soon as Ryan's room will become my sewing/Justin's play therapy room.

Justin is still struggling with tiredness and all but we are figuring out he needs more calories now and so we will be boosting his intake through his tube.

I hope you all are having a wonderful week and your weekend is full of life's little joys!

Love, Karen

Thursday, September 18, 2008 3:34 PM CDT

Well it has been a long time since I updated I guess it is about time. Now that school has started again you would think I had more time to catch up.

Justin is still doing well with better seizure control. It is not perfectly controlled but they are not as frequent. He has come home completely exhausted from school everyday and has already missed two days due to him not being up to par. He has vomited three different days so far since school started and we rarely had any vomiting over the summer. So I know his body is having a hard time gettting used to going back to school. We are now starting to run gatorade through his tube at school to help give him the extra boost he needs to get through the day. It is hard to watch him be so tired but I know it is just because of this disease.

I want to try to take Justin on another vacation next year while we still can. Probably Disneyland again because it is the most accessable and fun place for him to go. I love going on the rides with him. He just grins ear to ear and that melts my heart. I have to start planning now because money doesn't come easily here. I hope we can go the end of June or right as school gets out in mid June.

I am getting ready to get away for the weekend to a women's retreat and last weekend was the Mitochondrial Research Guild's Auction in Carnation and was really awesome!! It was so much fun and am so glad we could be a part of it. I am thinking of trying to go back to school too. I need to make phone calls first to see if I can.

I better get off of here and go play a game with Justin. He looks terribly bored and he and I need to spend time together before I leave for the weekend.

Love you all,
Karen

Sunday, August 17, 2008 1:38 PM CDT

Okay I just realized it has been a while since I have updated! Life has been very crazy here. We have been traveling fools lately!LOL!!

Last weekend was our big campout up at Lake Cushman. I went up Thursday and Justin came up Friday. By Saturday it was pouring down rain so I sent him back home so I wouldn't stress his body out since I knew we were going on a road trip and had one day of all day doctor appointments the following week.

Last Monday he had PT and we are really working on stretching him out. Then Tuesday was our big day we had to be in Seattle by 9am for a renal ultrasound and he was great for it! He just layed there and let them take the pictures! Then we had breakfast and were off to our Neuro/Mito doc appointment! We are still continuing to wean off the Topamax!! Then we had a break and got a snack and then were of fto our last appointment with Nephrology! This was the most concerning appointmant of the day. We dicussed his ultrasound from the morning and his bladder was so full it was back pressuring into his ureters and that means he is at a higher risk for infections. Nothing we can do about this as he is not toilet trained and so timed voiding is not possible. We are also concerned about his RTA and wether or not coming off the Topamax will affect this. I have to get a urine sample into the lab this week and we will see what he is peeing out! Then it was off to the lab for a quick blood draw and on our way home!

Tuesday night we headed out on a 7 hour car ride to see my sister, my niece and two nephews! We got in to her house at 3:30am! We had an awesome visit and even got to watch my nephew Alec's last soccer game! What I discovered is I would be the embarassing soccer mom on the side line cheering and yelling at them to run the other kids over just to make a goal!!LOL!!! My nephew was thinking of not claiming me as his aunt!!LOL!!! Oh well it was exciting! We came home Friday night and got to sleep in on Saturday before we headed up to the MIto Family Picnic!! Which in itself was a very fun and wet experience! Justin soaked himself with water balloons! It was more fun for him to pop them on himself then to throw them at me!! I am happy about that!!!

Today is a fun filled day of unpacking and catch up on laundry and cleaning! We are getting ready for another weekend of camping over labor day weekend!

I hope you all are having a fun filled summer and and are enjoying life as it was meant to be! Love to all of you!!!!

Karen

Thursday, July 24, 2008 1:12 AM CDT

July 23rd marks 12 years since my dad passed away. I miss him still so much. He never got to meet Justin but I know he is up in heaven watching over him. I think he has a big part of why Ryan is as wonderful as he is and I know he is watching over me and his strength is what makes me strong. I have always thought I was tough like my dad. I always wanted to be just like him. I remember he gave me one of his wallets so I could carry it in my back pocket just like him! I loved going to work with him(he was a landscaper and owned his own business) he would always let me plant flowers.

This has been a month of grief around here. Not in my immediate family but in my friends lives. From a suicide of a teenage boy, a drug overdose, a friends son passed away, and anothers BIL died in a car accident. Please pray for these families as they walk through their paths of grief and healing. Also there are many families with children in the hospital or at home not doing very well, pray for them the strength and courage as they walk this path they are on.

Okay good news for Justin! We are slowly weaning off the Topamax and he is still having great seizure control! I am so thrilled about this. He is doing well and I am loving every minute with him. Of course he said he wanted to go to school the other day(he was upset with me)and was mad because school is out for over another month.

Monday is Ryan's 19th birthday!!!! Of course he has to go to the Orthodontist that day so bummer for him!!!! I think we will celebrate on the 27th instead so his mouth won't be sore.

Time to get some sleep so much going on lately and I need the rest!

Have a wonderful day!!!!!

Love, Karen

Thursday, July 10, 2008 1:34 AM CDT

The beautiful sunny weather is so nice but too hot for Justin. He needs to keep cool so we have been hanging out indoors mostly. He did get out a couple of nights ago and rode his trike for about 15-20 minutes. Of course about 20 minutes after we came inside he was asleep and stayed asleep for the rest of the night. He was cracking up the whole time he was on the bike! Of course he was showing off for Makaila (the girl in the picture above). They are great friends and she loves Justin.

Yesterday Justin had his "well child checkup" at his pediatricians and he now weighs 48lbs and is 46 inches tall! He is getting so big! We spent almost 2 hours with his doctor! She is awesome! We are starting the process over in getting him a hospital bed with a canopy. Hopefully they can approve it quickly which I know they won't but we will try. I am alos getting Justin set up for PT this summer and hopefully we can continue in through the school year too.

I am just happy to be able to snuggle him every day and kiss his cute little face!

BTW If Grandama Evelyn reads this Justin says he misses you and Hannah and wants you to come back. He asked where you were the other day.

My eyes are getting too tired to type so I need to get some sleep!

Love you all,
Karen

Thursday, July 3, 2008 3:32 AM CDT

July 4th, 2008
The picture I added is a picture of Justin and his friend Mikayla. They are a lot alike and this was taken on June 22nd when we went to the zoo in Seattle! How cute!! Apparantly I am finding out she talks about Justin all the time to all of her family! She is an awesome girl.

Today (the 2nd) has been a very long day. It was first spent in mediation with my neighbors trying to work out a situation. Then I got to attend the memorial service for a friends grandson who had taken his life last Thursday. He was only 18, the same age as Ryan. Beautiful service though and you could definitely tell he was loved. Then I forgot about my therapy appointment but I went to my woman's meeting tonight. So all in all a busy day.

I was going to write about this wonderful soldier I met on the plane..... On our flight from Indy to St.Louis I sat next to this soldier and he was just returning from Iraq. We talk alot about Iraq and he showed me picture he took over there and how lucky his whole troop came home together. Praise God! We also talked about Justin and I told him about the Symposium we just attended. he asked for Justin's name and said he would give it to his mother so she could pray for him and her church too. After we got off the plane we were both waiting at the same gate to catch connecting flights. He came up to me and gave me this water pouch called a Camel Bak and told me to give it to my soldier. How Sweet!!!! I got all teary and gave him a hug. Just the sentiment of knowing this brave man who hs fought in war for our country would share a gift with my young man who fights every day to stay healthy. What an honor! So everyone please pray for Sgt. Pruitt that he can find peace as he readjusts himself to being back in America and home with his family after being gone and in the war zone for 15 months.

As for Justin I am not sure if he is just having issues from the heat or if he is just not feeling well but he has been awfully pale and tummy aches off and on the last few days. Keep him in your prayers that he feels back to his old self again soon. However tonight he has eaten a ton of strawberries and half a ham and cheese omelette, plus peanut butter crackers, and a huge glass of milk. I do not know where he puts it all. I think it is the risperdal increasing his appetite.

I need to get some sleep so I can wake up early and take Justin out on his bike tomorrow before it gets hot. Of course it also depends on how he feels too.

Sweet Dreams,
Karen

Monday, June 30, 2008 1:27 AM CDT

It really is still Sunday night but it feels like this last weekend has been one LLLLLOOOOOOOONNNNNNNGGGGGGG day!!!! I am so happy to be home from the Symposium but did not want to leave my Canadian Girls!!!!! They are the BOMB!!!!!! We had so much fun Saturday night and I am so glad they were there. So here's to you Canada 520 Girls!! You know who you are and don't forget to send me pictures of us so I can frame it and then when we meet up in 2009 I will bring it and we can all sign it like the stars we are!!!:)

The symposium was awesome. I walked away feeling content with the info I got rather than feling like I had more questions. I feel like there is a direction to go and move forward and not feel like we are stuck and there isn't anything more to do.

I have snuggled my boy all day! I missed him so much and realized how intertwined we are. I feel like a part of me is missing when he and I aren't together. Not sure how healthy of a relationship that is but it is what we have and I wouldn't trade it for nothing!

I am having a hard time keeping my eyes open right now so I think I will get some sleep! Darn Jet Lag! I am sure it isn't due to staying out until after midnight and getting up at 5:30 am to catch my flight home!!LOL!!!!!

Justin enjoyed having his grandma Evelyn here and Auntie Bev and his cousin Hannah. Hannah, he was asking where you were tonight. I am sure he is missing you!

Have a great night and as soon as I can catch up I will write more about the trip and the awesome soldier I met on the plane this morning as he is just getting back from spending 15 months in Iraq. Pray for him as he comes home and has to readjust to life at home. He gave me an awesome gift to give to my brave soldier Justin.

Love ya all,
Karen

Monday, June 23, 2008 1:54 PM CDT

The Zoo was awesome!!!!!! My friend Brooke took pictures and so when I get them from here I will post them. I think she got Justin's hand as he fed these Giraffes. There was a baby Gorilla too and Justin of course loved the petting zoo! All the goats and a rabbit and sheep he was in heaven!

Just a couple of more days until we leave and still so much to get done!

I cannot wait to meet everyone and see others that we met last year!

How exciting!

Got to run and finish med lists and instructions, and emergency info!!!!

Love ya!
Karen

Friday, June 20, 2008 11:59 PM CDT

I am completely exhausted and cannot wait to go to Indy for the symposium. I know it is going to be a weekend of lots of information and all but I am planning to take some time out to relax and enjoy myself.

Justin got his very own Rifton Trike today!!!!! It was givien to us by another family we know. Her grandson out grew it and Justin fits it perfectly! I cleaned it up tonight and he road it for about 20 minutes with me helping to steer and push. Mostly he peddled himself around. I love watching him on it. I will get some pictures soon and put them on here.

He is not up to par yet after being sick the last two weeks but hopefully by next week he is ready to have fun with Grandma Evelyn!!

I better run and finish the laundry and get to bed I have a million and one things to do tomorrow and Sunday is a trip to the zoo!!!!!!

Love ya!
Karen

Monday, June 16, 2008 0:16 AM CDT

I tried to update the page a few days ago but my internet failed on me. So I am finally back up and running so I will give you all a quick update.

Ryan's graduation was awesome!!!! I am so proud of him and all he has achieved. He is now actively applying for a jobs outside of taking care of Justin. He really wants to move out:( I am not too thrilled about him leaving home; I just want to protect him forever:) It is hard letting go and letting him become the wonderful man he is.

Justin has been sick for over a week now. He did not go to school all week. What started out as a virus became a sinus infection. We just started an antibiotic. On Monday I emailed his Neuro and decided to start him on Risperdal for his emotional outbursts. I am hoping this will help. It may take a while to see a difference.

I am looking forward to the Symposium coming up in a week and a half. I am trying to get my home cleaned up before my ex-Mother-in-law comes up here to stay while I am gone. I also have med lists and instructions to write; when my computer crashed I lost them all. I also have other work to do by tomorrow. I better get off of here and get it done!

Hug your love ones tight!!

Love,
Karen

Monday, June 9, 2008 2:03 AM CDT

Justin is battleing alot of sinus gunk and I believe it is another sinus infection. I am going to get him in to his pediatrician tomorrow. I know he is not feeling well because of his HUGE mood swings. However he tells me he feels good. He clawed my face again tonight in a rage and I just wish I could figure out what is going on with him. Maybe it is time for a psych eval. It is almost like he is in bipolar manic states when he is in these rages.

Ryan graduates from High school Tuesday night!!!!!!!!!!!
I am so proud of all the hard work he has done and he is such a wonderful young adult. I really have a hard time with calling him a man, I just can't get past that he is my little boy and he grew up. It makes you realize just how precious the younger years are and to treasurer them because someday they will want to move out on their own and have families of their own. I am selfish I know I just want to take care of my boys forever and never let them leave:) I will let go someday just not yet.

Anyways I will update tomorrow after I take Justin to the doctor and tell you about our exciting weekend.

Karen

Sunday, May 25, 2008 8:14 PM CDT

I am glad it is a long weekend! I hope everyone is enjoying their weekend too. I am slowly getting caught up on housework this weekend and even got to go to Costco with my mom. I love shopping there but tend to want more than my wallet can handle!LOL!!

On Friday all of our local school districts had what is called "Day of Champions" for all of the special needs children in the schools. It is like Special Olympics with all of the different field events. Justin and I did this obstacle course and a dash event(not sure of the distance). It was so much fun to be there with him and we got to eat lunch together, he actually ate a hamburger(he never eats them) and had cheetos and a cookie! I was impressed. I think we need to feed him outdoors more often. All the kids got medals and t-shirts. Since I know Justin will not wear his t-shirt I am going to get a shadow box frame and put the t-shirt and medal and one of the teachers is going to get me a program and I will put them all in it and hang it on the wall in the living room.

I have been noticing he is having more aggression issues and I have the claw marks on my neck and face to prove it. He is agitated easily and has been physically aggressive towards his care provider and my neighbor whom he most often prefers to me. He is having lots of word retrieval issues and he has vomited twice this week and today had a migraine. I am definitely keeping a close eye on him. I emailed his neurologist and hope to hear back on Tuesday.

Well I better get going and check on the laundry for some reason it just doesn't want to wash and fold itself!LOL!!!

Enjoy yourself and your children! Hug them extra long tonight!
Love,
Karen

Wednesday, May 21, 2008 0:26 AM CDT

Not much here to report. Just thought I would check in to let everyone know Justin is doing well. We haven't had a doctor appointment in a while, or ER trip, I could really get used to this. Although as hot as it was here Saturday it did take a toll on him and he ended up getting sick from the heat. Also he got sick on Mother's Day but it was VERY mild and no intervention was needed. I am amazed how well he is doing. I try so hard to keep him well and though at times it seems like this is the most difficult job I have ever had it is also the most rewarding when he feels good. I got to just sit with him tonight and tickle him and hear him laugh. AWESOME!!!!!!!

I think it is only 19 or 20 days until Ryan graduates!!!!! He will get his cap and gown Friday. I need to get busy and get his announcements out!

I hope everyone has a wonderful week and I will update again soon.

Love you all,
Karen

Friday, May 9, 2008 7:15 PM CDT

It is such a beautiful day out!!!!!

Justin and I just went over to the plant sale at Ryan's school. The horticulture club/classes hold this sale every year and it is great. I got a couple of things for my mom for Mother's Day. Ryan helps out every year and has taken some sort of horticulture class since his freshman year. This year he is a teacher's aide.

The symposium is less than two months away. I can't wait to go! I am a little nervous leaving Justin but I am sure he will be fine. He will have great care while I am away.

On the health news other than being a little more tired than usual everything is great. He has still been having seizures everyday but only one or two at the most.

Ryan graduates high school next month! I can't believe it! He is not supposed to grow up so fast!

Wow we are finally boring! A nice change from being sick all the time!

My friends daughter had pneumonia and that is why she was having so many seizures. Thank you for prayers for her.

I hope all you moms out there have a wonderful Mother's Day!

Love, Karen

Saturday, April 26, 2008 10:28 PM CDT

We have had a very fun day today! We all slept in until 10am and then after I did a few errands I took Justin and my neighbors two girls and went to the park. Justin loves this park because it has a swing that is made for special needs kids. It is really cool. Also the big boat play structure is made so you can wheel a wheelchair up it. Of course Justin wanted to scoot himself all over it on his behind, but then he went down one of the slides head first on his belly! He giggled the whole time! I loved seeing him have so much fun! After we got home he and I went for a walk around the neighbor hood and came home and sat outside for a while just relaxing and taking in the nice cool sunny weather!

Ryan has been playing video games with his friends all day! They are claiming to be hermits and didn't need to go outside. Boy did they miss out on a beautiful day!

Besides all of the seizures he has been having lately things are going well. It is kind of strange though having life be so quiet. I almost don't know what to do with myself.

I would like to ask for some special prayers for my friends daughter. She has had some awful clusters of seizures today. Please pray that she doesn't have anymore and they don't have to take her in. Her family is very special to me and it is hard when your friends are hurting.

God Bless Everyone,
Karen

Monday, April 21, 2008 2:18 PM CDT

I am so bummed!!! I was just calling to find tickets to Sesame Street Live When Elmo Grows Up that are handicapped accessable and there are none available!!!!! Justin would have loved to go to it! I guess when you wait until the last minute; but on that note I didn't have the money before now. Okay I don't really have the money to spare but for a special treat it would be worth it.

Justin had about 8 or so tonic seizures over the weekend and last night had a migraine and threw up. It came on really fast too. So he stayed home today and seems to be feeling better but still doesn't want much in his tummy.

I want to ask for some prayers for a family we have met online. All of her kids have Mito and so does she and they could really use some support with our prayers. Thank you.

Can you believe we had snow in April??!! Last night it was hailing pretty heavy too. Sparky(our dog) did not want to go out in it, he was growling at it!LOL!!

I hope everyone has a great day as today we are back to Spring weather!

Karen

Wednesday, April 16, 2008 1:17 AM CDT

I guess I should update since our trip for the MRI/MRS. Justin stayed well for it and I am grateful for that. He did really well with anesthesia, just took him a while to wake up after. Aparantly he was snoring while under so they had to put a cushin under his neck to keep him from snoring. I have never known him to do that.

Last week was challenging over Spring Break with his behavior but since school has been back in he is back to his usual self. Although he had a migraine today and threw up in our van!(YUCK) I felt so bad for him. When he came off the bus today he looked a little "off" but we had to go to Ryan's school so he could do his presentation of his Culminating project that is required to graduate and Justin was one of his visual aides. He did his project on Mito. Justin started crying during the presentation and by the time we were back in the van and running our next errand it became apparent he had a migraine and he got sick. So needless to say his wheelchair and the carpet in the van along with Justin got a good scrubbing tonight.

Ryan passed his Culminating Project, in fact one of the teachers that judged him was so captivated she forgot to write anything down!! That is so awesome!!! I am so proud of him and I cannot wait for his graduation, I will be the loudest parent there cheering on my son!!LOL!!

Anyways things are going really well and I am happy the boys are back in school!

Praying for a great day tomorrow!!

Karen

Tuesday, April 8, 2008 1:08 AM CDT

Monday Night 11pm

Justin has had a rough day and last night he kept waking up crying and his Myoclonic Jerks were real bad too. Today he has been VERY moody and difficult. By this evening he threw up his dinner and was very clammy. I gave him some medicine to help with the vomiting and he has no fever. I am hoping he feels better by morning as he has a sedated MRI/MRS tomorrow afternoon.

I just started feeds in his jtube and hopefully he tolerates them okay since he cannot have anything to eat after 7am. Clear liquids until 11am. I will check on him throughout the night to make sure all is a go tomorrow. I just want to get this over with.

Next is some news on my genetic testing...... I carry the g848s mutation which means his dad theoretically will carry the a467t mutation. Now we have to arrange for his dad to come up here and get tested. What does this mean you ask..... I will tell you as soon as I hear back from his doctor. Am I scared.. of course. I would love to know what Justin's future will be. I do not want to lose my son. I love his smile and his funny quirks and comments he makes. The way he snuggles and crawls up into my lap and looks at me and says "HI!" like he has just seen me for the first time that day. Just a few of the qualities that I enjoy. Okay enough of being a downer. I will remain optimistic that this disease is not progressive.

All right I am off to sleep since I need to be awake at 7 to turn his feeds off and start clear liquids. Plus I need ot make sure he doesn't get sick through the night.

Please keep all of our caringbridge families in your prayers today and always. Whether life is going well or it is a struggle we all need prayers to lift us up.

God Bless,
Karen

Monday, March 31, 2008 9:40 PM CDT

This will just be a quick update as I need to start getting Justin's meds ready so I can get him to bed. He has been hard to wake up in the morning lately so I think earlier to bed may help that.

Wednesday we will be heading up to children's for an EEG. We have never done a sleep deprived EEG before so this will be fun:( Okay not really Justin is such a grump and can be very uncooperative with these. His have always been 48hr Video EEG's where he goes inpatient to catch seizures. This is just to get a baseline though now that we have finally changed all of his Neuro care to Dr.Saneto. I am still waiting to get his MRI/MRS scheduled but that should be done soon.

I am still waiting to hear about my test results and such but other than that things are going well for us. It is such a nice change.

I hope everyone has a great week and I will check back in soon.

Karen

Saturday, March 22, 2008 11:02 PM CDT

Happy Easter!!!!!!!!

Not much new here to report. I went and had my blood drawn last Wednesday for the genetic testing so now we wait for about 3 weeks for results. I am on the fence how I feel about these results coming and what they mean for our family.

Justin had a train table given to him and he absolutely LOVES it. He will play with it for hours. It came with a wooden train set and he already had a wooden Thomas the Train set and they are interchangeable so we are having lots of fun! Okay so I get to build it and he takes it apart while playing with it.

On Tuesday we will be going to the firestation and Justin will get to go for a ride in the fire truck again!! Today we went to a egg hunt put on by the fire station and that was lots of fun! As you can tell we love the McLane Fire Department!

We hope everyone is enjoying this wonderful Easter weekend!

I feel so blessed to have such wonderful family and friends in our life!

Karen

Saturday, March 15, 2008 10:04 PM CDT

Here it is Saturday night and all is calm tonight.

Justin and I went to his school auction and carnival last night and had a great time for the most part. He was grumpy and tired but as soon as I got him to the games where he could throw things he was happy. He also enjoyed seeing all of his friends! All the girls that came over to say hello to him! I am going to have to keep an eye on them!!LOL!!!!!He LOVED all the attention!!!

I heard from his doctor last night and he really needs to get me tested to go further in what Justin's diagnosis means. I will explain it better after I know more. Too confusing for me right now. I will be going up to Seattle on Wednesday to get the blood work done. Justin is going on a field trip that day so I will have plenty of time to run up and back!

Well I am off to go snuggle with my sweet boy! Maybe it will be an early bed time fo rboth of us tonight!

Karen

Thursday, March 13, 2008 1:30 PM CDT

Ryan and I are booked on a flight for June to Indianpolis for the Symposium!!!!!! This will be such a great experience for Ryan and a great chance for him to ask specialists from around the country questions that he has. I am so excited that I can do this for him.

I am still going to apply for a scholarship but there are other costs involved and in case it is not all covered we will still need to raise more money to go. I am sure we will be able to do this. There is still 2 and a half months before everything needs to be finalized.

Justin is doing well. I think he is gaining weight because some of his 7 slim pants aren't fitting as loose now. In fact the are a little tight! I just got a call from the audiologist that he saw last month and she finally got records from Mary Bridge where he had his first hearing tests done. Turns out he has Auditory Neuropathy which I had no idea I was told he had sensorineural hearing loss. Actually he does have mild sensorineural hearing loss along with the auditory neuropathy. However, he does seem to hear just fine but I think some noises he doesn't respond too and a huge case of selective hearing!LOL!!!

Well, I hear the laundry calling my name..at least it is not the dishes today!!LOL!!

Thank you for stopping by. Please leave Justin a message in the guestbook!

Karen

Tuesday, March 11, 2008 9:39 PM CDT

It is Tuesday night and I still have no more information than I had last week regarding Justin's test results. It is frustrating to say te least. From What I have gathered from the internet is this can point to Alpers, Severe childhood multisystem disorder, or spinocerebellar ataxia-epilepsy. Not good no matter how you look at it.

I got to go away this last weekend to the Beach without the boys and it was much needed and lots of fun!!!! Of course Justin got sick Saturday and Ryan called me all day and finally he needed to be taken in. My mom and Ryan did a great job taking care of him so I did not need to come back home to handle everything. Part of me felt like a bad mom for not coming home but I know he was in good hands. They never made it back to a room because Justin perked up and the wait was like 6 hours even on an urgent code. So they took him back to my moms and he was fine by the next morning.

I am looking into going to the symposium and I would like to take Ryan with me. He is so upset about all of this with his brother I think it would be a good thing for him to be a part of. I am hoping to get a scholarship for us or if there is anyone out there that would like to donate frequent flyer miles or anything to help with the cost that would be much appreciated. I am finding we need to book our flights soon to get a good price. Right now we are looking at about $400.00 each round trip.

I hope everyone has a great night and rest of the week!

Karen

Wednesday, March 5, 2008 1:02 AM CST

I am trying to wrap my head around some test results we just got back. In February Dr.S ran the POLG testing on Justin and he does have two mutations in the POLG gene. So he has POLG disease (still Mito) and until I can talk to Dr.S I am swimming in my head and finding more and more articles to read. Scary stuff in these articles.

Anyways I wasn't planning to go to the UMDF Symposium this year but I think with this new info it would be very beneficial for me to be there. Now it is just a matter of the air fare, hotel, ground travel and Symposium cost to worry about. I will try to get a full or partial scholarship this year but it must be paid for and then they give you a check once you get there. I checked on it once before. I will go by myself unless we can find a way that Ryan can go too(Justin's brother) since he is very interested in this. However in thinking about cost for one person it is about $1100.00 not including ground travel expenses and food. But if I go by myself too I could call UMDF and see if anyone is looking for a roommate and that cuts costs too. It is in Indianpolis this year. I am just rambling trying to convince myself I can go.

I hope you all are having a great day and please say a prayer that we can get better info on this new finding.

Karen

Sunday, March 2, 2008 3:16 PM CST

Wow it is March already and in four days I am heading to the coast for 4 days without children. Yikes!! I may have withdrawls from not hugging my boys!!!! Okay really I only get to hug Justin as Ryan thinks he is too old to hug his mom!

Anyways, Justin and I spent Friday night in Seattle and it was fun spending time with him. He had a hearing test done Friday that showed us some hearing loss, but there were a lot of false positives too so we are going to go for the seddated hearing test to see how his hearing really is and if he would benefit from hearing aides.
After the test we went and checked into our motel room downtown Seattle near the Space Needle. I have never been that close to it before and it was really cool. We went and had dinner and then had to go find a drug store since in all the packing I forgot to pack syringes for his meds. I luckily had one but I needed five. We explored the streets trying to find the Rite Aid and finally we came upon it after several people had helped us. Then asa we were walking back I realized just how far out of he way we walked to find it!LOL!! Oh well It was a very nice walk and I would love to go back down there and explore again!
Saturday morning we woke up and got to have breakfast at the motel and then went to get Justin's blood drawn and after that we went to the Mito Summit.

The Summit was great and I got to meet two other moms from Washington and I was so happy to meet them! Justin did pretty well but as any typical child he can only handle being quiet for so long!! Next year I am not bringing any children!!

Well I need to go get ready to go shopping and other things I need to get done today!

Have a wonderful week!

Karen

Monday, February 25, 2008 12:17 AM CST

Yes I am up late and really should be going to bed but thought this sounded like more fun!

I went to the slumber party with my girlfriends(there were about 16 of us) in Port Angeles. It was just what I needed. The boys stayed home by themselves and had a pretty good time. Of course Ryan called me several times and I called him too. Ryan was a little concerned because Justin was crying from pain somewhere but couldn't tell him where. So I told him what to do and they made it through the night!!! Ryan is sooooooooooooooooooooooo wonderful with his brother and I am so proud of him.
The best part of the weekend was coming home and Justin sqealing with happiness that I was home and gave me the biggest hug and kiss!!!! That was what I needed also.

Well we have one last trip to Seattle this week and we already have it set up to either stay at the Ronald McDonald house or a hotel on Friday.

I am completely exhausted and need to get some sleep! Just wanted to update first.

Love you all,
Karen

Thursday, February 21, 2008 11:24 PM CST

Well today was another trip to Seattle but I am so happy we went because we got to change out Justin's G-J tube to the button style!! Now we have one more trip up on the 29th for a hearing test then we also have to go up March 1st for lab work and the Mito Summit. I am really thinking of just staying the night in Seattle if I can find an inexpensive place to stay. Anyone know of any cheap but nice places to stay???? It would be just Justin and I. He is fun to stay in a motel with; he likes to bounce on the beds!

I should probably not stay on here to long I have lots of stuff to do before I go to the slumber party Saturday.

I am praying everyone has a wonderful weekend and for lots of sunshine!

Karen

Wednesday, February 20, 2008 0:19 AM CST

Tuesday 10:20pm

I do not like that this never dispalys the right time for the west coast. Maybe it is because when I post it is usually late at night and so it always shows a day later than what it really is. Okay enough trivial stuff.

All in all today was a great day. I am now 38. Today Justin was happy to go to school and I was happy to send him. I got to go to lunch with one of my friends to the Olive Garden. Then tonight I got to go to dinner with my mom and my boys to Red Robin. I won't need to eat for a week after today.

Ryan was very thoughtful in his birhtday gift to me. I have been complaining for awhile that our van needs new windshield wipers(they make awful noises onthe windshield) and so he got them for me, how sweet! Now I can't wait until it rains to try them out and of course living here in Washington I won't have to wait very long!LOL!!!! I am watching the weather forcast tonight for sure!!LOL!!

I got a beautiful amethyst bracelet form my mom and an necklace with an elephant pendant. She told me elephants are a symbol of good luck(which we could use) and luckily I don'thave to see it as a republican symbol(no offense to any republicans out there I am not one though).

However the best birthday gift(sorry mom and Ryan) was the message from Interventional Radiology saying they got the correct button style G-J tube in for Justin so tomorrow I will call and get him on the schedule to go have it changed out form this awful PEG style G-J tube!!!!!!!!

Also, Cindy if you read this tomorrow(Wednesday) I am ROTFL over the ecard you sent!!!!!! I had to play it a few times!!! Thank you!!

Justin is still a little sluggish and all but should be back to his normal self soon!

March 1st in Seattle is our 2nd annual Mito Summit at 10am. I am so excited. If anyone is interested they can go to www.nwmito-research.org for more information.

Well I should think about heading off to bed now, ah who am I kidding I am going to go veg-out with the dog and watch the rest of Law and Order!

Love,
Karen

Sunday, February 17, 2008 0:02 AM CST

(SUN EVE)
Justin woke up vomiting again and with diarreah(sp). We then slept until 1:30 this afternoon(much needed rest for both of us). He is not tolerating his meds very well and I am slowly giving him gatorade through his jtube. We are hoping for a turn around by tomorrow. I am worried he picked up rotovirus in the hospital. Keep him in your prayers that he will be on the mend soon.

(SAT NIGHT)
I hope everyone had a wonderful Valentine's day. Justin was pretty tired after school and by that night was throwing up and would not stop so I had to take him in to the ER. From there he was transferrred to Seattle with a WBC count of over 24,000 (norm is between 5-11 I believe). So it was a very looooooooooooooooooooooooooooong night in two ER's and he finally was admitted to a room after 1 in the afternoon on Friday. They were concerned about appendicitis however that is not his problem. Then they found him to be full of stool so we got to do a bowel clean out and we arrived home about 9pm tonight(Saturday). We had some wonderful nurses on the 2nd floor and he did not want to come home. I think he loves getting to lay around in a bed and be waited on all day. Plus they have the cartoon channels and we do not. Let's just hope we do not have to do this again for a long time.

Other than that I am ready for a good nights sleep in my own bed and counting down to my birthday on Tuesday. Not that we have anything planned or that I am looking forward to another year older but it is my day and I get to do what I want!LOL!!!

Well it is time to get meds done and feeds running so I can accomplish the above!

Good night!
Karen

Saturday, February 9, 2008 1:31 PM CST

I hope everyone has a wonderful day today. Today we are off to the caucus to vote. Ryan is getting very interested in the presidential race and this is his first year to vote. He is healing very well after his surgery; except he is having pain on his left side still and it is really hurting when he sneezes.

Justin is doing well too just the same old battle of the constipation and tummy struggle. In fact I should get off of here and feed him and give him his meds. We have to get going soon.

Prayers and hugs to everyone.

Karen

Tuesday, February 5, 2008 10:19 AM CST

Ryan is home and healing very well. Still quite sore but able to move around some. Just getting off the couch or out of the recliner is hard. I am picking up his homework today for the week so he doesn't get too far behind.

Justin is great he has been sleeping well and happy.

I am off to start the day and hopefully get some things done here at home.

Have a great day!

Karen

Sunday, February 3, 2008 9:43 PM CST

Well today has been a crazy day. Instead of Justin needing to go to the hospital it was Ryan's turn. He was up all night with lower back and abdomen pain. We spent all morning in the ER and he was in surgery by two this afternoon getting his appendix removed. Luckily it was caught early and it did not burst so we are happy about that.

I am very exhausted and need to go put Justin in bed. I will write more tomorrow.

Karen

Monday, January 28, 2008 8:59 PM CST

Today was a snow day here. So Of course Justin was awake at 3am and would not go back to sleep and I of course did not go to sleep until 1am. We are such a pair he and I.
I will say he had a seizure around noon and fell asleep shortly after only to have another in his sleep and I thought we were going to have to give him the Diastat to stop it. Sometimes I wonder how often he has seizures in his sleep and if that is the cause of his waking at odd hours or not sleeping all night sometimes.

I talked with one of the durable medical companies we deal with and we have finally got underway with ordering a canopy (type of hospital bed with a mesh tent over it), that will also be able to elevate his head because his reflux is so bad. The skirt around the bottom will be a planets theme. There wasn't many to choose from. Hopefully after I see the one they send I will be able to make some myself in other themes like Spongebob or Spiderman, maybe Curious George. I have been working very hard getting his room organized and now if I can just get another afternoon in there I should be done with his bedroom. I already finished the medical cabinet in the kitchen and his cart with all his medicines in it too. It feels good to finally feel like there is some order to all of this chaos.

My schedule is quite busy starting in February with the Guild meeting and a baby shower for my friend in the same day. Also I have many committments the next weekend too. On the 12th the boys go to see Dr.Saneto and Justin will get his routine 6 month changing of his G-J tube. I also was invited to a slumber party at some friends in Port Angeles the last weekend of February. I haven't been to a slumber party in years. Not sure if I will be able to go but I am going to try. It may be a challenge as in March I am going to the beach for a weekend away and I do not like to be away from Justin that often. I will just pray about it and I know God will lead me to where I am supposed to be.

I should get off of here and get busy figuring out what to make for dinner.

Thinking of you and your families,
Karen

Sunday, January 20, 2008 4:55 PM CST

Well we were lucky and did not have to go to the ER. He is still not feeling very well; does not want alot in his tummy, but hopefully will feel better by Tuesday to go to school.

I am off to put bookshelfs together and rearrange Justin's room to better accomodate all of his supplies and toys. I feel ambitious today!

I hope you all have a great weekend and will update soon.

Karen

Friday, January 18, 2008 12:58 AM CST

Why is it everytime I say everything is going good the other shoe drops?

Today I was going to go volunteer at Justin's school for the science exhibit after taking my neighbor to an appointment she needed to be at. Well I forgot my cell phone this morning and both boys schools were trying to reach me! So I was doing everything I had planned and when I got to Justin's school they came running out of the nurses office to get me because Justin was in there really sick. He was fine when he got on the bus this morning so he turned really fast. Then after I pull up at home and was unloading him out of the van my neighbor came running out because Ryan's school had called my mom telling her Ryan is sick and needed to go home. So I left Justin with my neighbor and went to pick Ryan up. I think Ryan is having a migraine and Justin is doing his usual throwing up and is REALLY pale. He also has these bumps again on his leg like he did when he had a staph infection before so I will be watching them closely.

I better go check on the boys just please keep them in your prayers today that no ER trips are necessary.

Karen

Thursday, January 17, 2008 10:27 AM CST

Good Morning! Another cold and icy morning here in Washington!

Justin made is sucessfully through his dentist appointment on Tuesday. By successful I mean he was not combative with the dentist in fact he was very compliant. He even let her polish his teeth! Great news is he has no cavities!!!! Cavities mean a trip to the OR to get them filled and the less we have to put him under the better.

He has been having some tummy issues but nothing out of the ordinary. He just hasn't been having his regular BM's and that is a problem for his tummy. It is so nice to to have nothing major going on. A very nice start to the new year.

Next week we are going in to just check in with his pediatrician. We are doing this every couple of months to make sure all of his needs are met and she and I can stay on the same page. In fact I need to check in with her about getting Justin's special bed (it is a hospital type bed with a canopy) ordered. It will be nice to elevate his head because his reflux has been acting up more. I also need to check on the bath chair that was ordered for him it has been a couple of months and still nothing. We got the car seat right away but nothing on his bath chair.
I can't believe with nothing going on I had so much to write about! Maybe it is just I am avoiding the dishes:) however they do not wash themselves so I better get them done. I hope everyone has a wonderful day and I will check back in in a few days!

Please leave Justin a special note in the guestbook so I can read it to him. Thank you.

Love,
Karen

Friday, January 4, 2008 9:32 PM CST

Here we are starting a new year and all is good. Finally I want to let my guard down a little but I can't. Justin has been having quite a few seizures but seems to be handling them good so far. The good part is he is not sick and needing to go in to the doctor or hospital. I told him on New Year's Eve that he cannot get sick this year. We are going to have a sick free year. Of course I know I cannot control this but I will do my best to make sure this happens. I think these seizures are just a part of a cycle he goes through.

I just wanted to say hello to everyone and I hope everyone is well.
I am off to a meeting right now for some me time. I hope you stop by and leave a message in Justin's guestbook and everyone has a wonderful weekend!

Karen

Saturday, December 29, 2007 4:12 PM CST

Yay we survived Christmas! I thought Justin was going to be sick Christmas morning but I just have to say that Zofran saved the day!!!! He wouldn't hardly eat the day before and being that it was 1am by the time we got home and Justin's meds done and still had stockings to stuff I forgot to start his feeds that night so I think that is what did it. I felt so bad for forgetting to turn on his pump. I like to wait until he is asleep to hook it up to him and turn it on otherwise he pulls on it.

The drive down to Portland was smooth sailing and Justin had a great visit with his dad and family there. He was a chatter box all the way home.
I got to pick Ryan up and bring him home for Christmas and it was awesome to have both my boys home on Christmas morning. It was the first time in three years. I even cooked dinner and my mom came over and the best thing was it SNOWED!!!! It just never seems like Christmas without snow.
The boys had a great time and Justin got lots of puzzles and things to color and draw on, plus lots of books. I got him a book that shows in detail about the human body and how it works with lots of pictures because he asks sooooooooooooooooooooooooooooooooo many questions about the body and why we have the parts we have, like the brain and feet, toes fingers, arms tummys etc.....
Ryan got a game for his PSP he has wanted and CD's too, and lots of clothes. Also two giftcards that he is looking forward to spending.
I just wanted to say thank you again to our Christmas angels for helping to make our Christmas a really awesome one.
I almost forgot one really cool thing was a special needs trike for Justin, it is a loaner the one we got on Christmas but I got a call from someone that has one we can have to keep. I am soooooo excited for Justin.

Wow this is turning into a book and I really have dishes to go wash (yuck I hate dishes).

Please stop by and say hello to Justin in his guestbook.

Take care and all my love to you!
HAPPY NEW YEAR!!!!!!!!!

Karen

Friday, December 21, 2007 1:08 PM CST

How fast Christmas is approaching and I am running out of time to get things done. I have completed many of my projects but now my sewing machine just won't cooperate. I am going to get stronger thread today to see if that helps. But most everything else is done!

We had a special visit the other day from Santa and the McLane Fire Dept and the WSDOT. Thank you all for such a special day! Justin however had a hard time with so many people here and did not care to see Santa. My neighbor(who I call his other mother) was able to calm him down so we could get a couple of pictures. It is a day we won't forget.

I also want to send out a very special Thank You to all who have contributed to Justin's medical fund. I cannot tell you how much this means to me and my family especially Justin. We are now going to be able to get his Mito Tonic supplements for a very long time. I am so grateful for everything you have all done for us.

Oh and yes the best news is last weekend while his grandma was here he took several steps while holding onto the wall. Of course his body was full of adrenaline from the arrival of his grandparents but still he walked!!!!!!! It is our Christmas miracle!!!!

Merry Christmas to all and please remember to keep our little angels in your prayers. Some have earned their wings and many are fighting for their lives and they all need our love whether they are ill or not.

Please stop by and send Justin a message in the guestbook to let him know you were here.

My love to you all and may your holidays be blessed with the love you give.

Karen

Wednesday, December 12, 2007 3:28 PM CST

Our home is still calm and I am really enjoying December. It is the first month this year that we do not have any appointments scheduled. and we should start out January with only Ryan's Orthodontist appointmant! Let's pray it stays this way for a while. I really enjoy it.

I am almost done hanging up Christmas decorations but there is no time to relax as I have less than 12 days to finish my sewing projects. I have just not been very motivated and maybe just more tired than usual.

Well I am off to clean. Justin's grandparents are coming up from Oregon and bringing his cousin too. She is only a month and a half younger than him. It should be a blast but I have got a lot of work to get done before they get here.

Please stop in and sign the guestbook to let Justin know you were here.

Love to all,
Karen

Monday, December 3, 2007 9:50 PM CST

I am happy to say Justin is feeling much better.

I cannot believe all of the flooding here in Washington. Please pray for all the families that are having to leave their homes and watch them be destroyed by the water. I hope the rain stops soon.

Also please pray for our caringbridge friends whose children have earned their wings over the last week. Zach and Kirkland you will be missed.

I don't have a lot to write today as things have been very calm since last week. I did get smothered in kisses from Justin over the weekend, even Ryan got a few! I love it when he is in his lovey, snuggly moods, they don't come often enough. Usually he is mischievious and grumpy, or just plain mellow.

I am of to take advantage of his great mood tonight.

Have a great week!
Karen

Friday, November 30, 2007 0:23 AM CST

UPDATE: 10:30am
Justin finally slept until 5 this am but is still feeling bad. He has a temp of 99.8 so I am giving meds and going to put him down to take a nap. I know he doesn't feel well it shows in his face, but at least he is not throwing up. His WBC count last night was over 16,000 but the ER doc discounted it. He didn't have a temp last night.

Today left us with a trip to the ER for the usual vomitting and excrutiating pain. I can't tell you how many times they stuck him trying to get an IV in but they finally ended up putting it in his neck. We are home now after a bolus of fluids, he is still throwing up though. I just gave him some more Zofran and I need to try and get his seizure meds in him but I am not sure if he can keep them down. I may have to slowly give them in his J port. I am soooooooooooooooooooooooooo frustrated with our local ER. They had the chance to admit for overnight hydration but decided I can handle this at home. If we need to go back tonight I will drive the 60 miles to Seattle! I am tired of our local hospital.

Okay I have vented and now I need to go start meds. Please pray he doesn't need to go back to the ER tonight.

Thank you.
Karen

Monday, November 26, 2007 9:42 PM CST

It is soooooooooooooooooo cold out!!!!! I am going to hate going outside in the morning to put Justin on the bus, he will hate it worse than me. He just does not do well with cold. I need to wash his Transformer blanket tonight so it can keep him warm and toasty!

Justin gave us a scare last night. He curled up in my recliner around 5 and fell asleep, well after a few minutes I heard him breathing funny and looked over and his eyes were half open and he was drooling, he was in the middle of a seizure. Well I waited what seemed to be an eternity to see if he was going to come out of it on his own but after three minutes I had to give him the diastat to bring him out of the seizure. I couldn't decide wether to call 911 or not. I didn't I just gave him the diastat and it brough him out of it. If it had gone on much longer I would have been calling. It was scary though this was the first time we have had to use it to stop a seizure. In fact it is time to go give him his medicines so he can go to bed.

Well I hope everyone stays warm tonight and has a great week.

Love,
Karen

Wednesday, November 21, 2007 3:00 PM CST

Tomorrow is Thanksgiving and I am so thankful for so much in my life. We have a roof over our head, food in the cupboard, heat, lights and love. But the most important are my family and friends.

First there is Ryan, my sweet young man. He is now 18 and such a wonderful son. He is such a resposible, kind, giving soul. He helps take care of Justin and knows his routine in and out. He will graduate high school in June and I am just so proud of him.

Then there is Justin...... my sweet boy who can light up a room with his smile. Something we have been hearing more of lately is his laugh. Sometimes it is a devious little laugh but such a sweet sound. Though he has been through so much he still keeps fighting and doesn't let anything stop him from being independant (including mom). He is getting into school again and I am loving all his art work coming home.

Then there are the wonderful people who have helped our family past and present. We couldn't do this without you. I am truly humbled by your kindness and generosity.

I am so grateful for everyone and everything in my life! I wish everyone a very Happy Thanksgiving! May all your blessings be counted.

Love and God Bless,
Karen

Friday, November 16, 2007 8:58 PM CST

I cannot believe it is Friday already! The weeks seem to be flying by and I still am not making much progress on my Christmas stuff. I am hoping to have some time this weekend with Justin's care provider coming over to do some sewing.

Anyways, this last week Justin had an appointment with genetics and it was a good appointment. He hadn't seen Justin since his dx over two years ago and he has really declined since then. But we talked more indepth about his last muscle bx and the results and we also talked about the possibility of doing a fresh bx as soon as they are up and running in Seattle. This should be sometime after the beginning of the year. Yes, Seattle will be one of only a couple of places where fresh muscle biopsies will be done! I am so excited that Seattle will be a Center of Excellence in Mitochondrial Disease. Of course we love our doctor at Children's and actually our whole team of doctors. Anyways the reason we talked about doing the fresh one is to make sure we aren't missing something. I will feel better to know we have exhausted every possible avenue. Maybe it is me needing more definition of the disease through hopefull a better dx to get to a place of complete acceptance. I hate always wondering about him dying. It scares me so much to know I may lose my son before he can be an adult. Now I know he will probably never be able to live alone or out of my care but I want him to grow up and experience life to the fullest.

Okay I don't want to be depressing. I need to go rest my arm. I got my flu shot and a Tetanus shot today and boy does my arm hurt!

Love and God Bless,
karen

Monday, November 12, 2007 3:53 PM CST

All is quiet here in our home. Life is good and while it is peaceful it is time to really get started on holiday crafts. I am making Justin a quilt for Christmas (I have never done this before), and not sure what I am making for Ryan but I better figure it out soon. I am also crocheting a blanket for my nephew and have a couple other sewing projects underway. Okay so I've only got the material for the sewing projects and I have barely started the crocheting but it will be done. Time is sparse but that is what is so great about evening television; you can crochet and watch tv at the same time!LOL!!

Luckily Justin's sniffles he has are just mild and I am not stressing over a sinus infection. I just wish the seizures would lessen. They take so much out of him.

My neighbor got him these Nemo murals to color for his birthday and he has been coloring on them for the last few days. He has also decided his sheet on his bed was a great canvas for his art and colored on it with markers. (not to self: remove all markers from his reach while he is in his bed.) I am just glad it wasn't the walls.LOL!!

Well I better get to work around here while things are calm.

Love to All,
Karen

Not everything that is faced is changed but nothing can be changed until it is faced. ~James Baldwin

Tuesday, November 6, 2007 11:04 AM CST

HAPPY BIRTHDAY JUSTIN!!!!!!!!!!!

Today you are 10 years old and what a journey it has been so far. You are such an amazing young man. Through all of the laughter, tears, smiles and battles for control, one thing is constant is my love for you and admiration of your strength. No one should have to go through all you have been through, but you know no different and how I wish you could.
I am grateful you are in my life for you have shown me a love like no other. God did good work when he created you for me.
I am so glad you had so much fun at your party this last weekend, though you ended up sick by Sunday morning. The laughter and excitement in your voice as your friends showed up and teachers from school, was the best medicine for a mothers heart. I am grateful that so many other people love you and care to be a part of your life.
I hope you are having a wonderful day at school and I can't wait to see you when you get home!

Love you forever from here to infinity and beyond!
MOM

Friday, November 2, 2007 11:30 AM CDT

HOORAY!!!!!!!!!!!! JUSTIN HAS MADE IT TO SCHOOL ALL FIVE DAYS THIS WEEK!!!!!!!!!!!!!!!!! This is the first time since school started 2 months ago. He is still congested some and did not want to get up for the bus this morning, but he made it. All we did was shorten his days by one more hour at school and I drove him to school this morning so he could rest a little longer.

Today is a special day for me and those who know me will know why. Let's just say that 9 years ago today I changed my life and my children's for the better and haven't looked back. So to celebrate today I am going out to lunch with a friend. Of coourse right after lunch I have to rush home and finish getting the house in order for Justin's birthday party tomorrow.

Ahhhhh Justin's 10th birthday is quickly approaching and I am amazed at this young man of mine. He has been through a lot in the last 8 years and he is such a fighter! His actual birthday is on the 6th but we are having a party for him on the 3rd. I got a piniata and stuffed it full of goodies, also there will be a clothes pin game and drop the penny in the cup inthe water game. Should be lots of fun! I just don't think there is enough room in my tiny apartment to hold all of the kids that are coming.

Ryan has been home witha headache for two days now and I am hoping his Imitrex will do the trick. I worry when he does not feel well.

Well that is all for now, got to go get ready to meet my friend fo rlunch.

Love to all,
karen

Wednesday, October 24, 2007 1:26 AM CDT

I need a vacation. The boys need one too. Our home needs a good cleaning, the dog needs a bath and the mountain of laundry needs to be washed. Of course all of that requires ambition and energy which I am all out of right now. All of this aside I am grateful for today and all of the wonderful family and friends in our life.

Justin had his eye doctor appointment today and I really like this Opthamologist. He was straight forward and honest with me. He told me it does not matter if Justin wears his glasses or not and that his vision is the least of his problems. He noted how much Justin has deteriorated since he saw him a year and a half ago. All in all his vision is fine and we have more important things to worry about, like the vomiting!!!

On top of everything else I wentto hook up Justin's feeding pump tonight and it won't work. I tried cleaning it and I read through the manual too and there is definitely something wrong. When the book doesn't even have the code it is reading you know it is broke.

I hope everyone is having a great week and I will try to keep this updated more. It is hard when everything seems to be falling apart. Please I need to hear something hysterical to make me laugh so hard I split my sides.

I am off to bed and hopefully no illness in the morning!!!

Love, Karen

Sunday, October 21, 2007 3:07 AM CDT

Another late night at our home. Justin had been doing really well for the last couple of days and even this afternoon he seemed to be okay but a few hours ago the vomiting started all over again. I think it may be due to the fact that he has been so congested again and it is draining into his tummy. It is so hard to say what is going on with him the last few weeks. All I know is we are exhausted and ready for a break from the illness.

I went to Justin's school conference the other day and I think his teacher and I were almost in tears over the skills Justin is losing and how much harder school has become for him. She has known him for several years. It's not fair!!!!!!!!! He is such a smart young man and he knows his body is not okay and you can tell how angry he is. I think if I can keep his mind focused on things he likes he won't think about the bad stuff.

I had to go buy Justin a new pad of paper tonight, he has gone through all of his drawing paper lately. He has discovered he loves colored pencils to draw with and he can poke holes in the paper when he is done. There has been mounds of shredded paper all over the living room this last week, mere remnants of his beautiful art, I should have grabbed them up and pinned them on the wall but he had so much fun making the mess.

Well that is all from here for now I am tired and should sleep before the next round of vomit comes.

Please say a prayer for Justin that he can get over all of this illness soon and have some peace.

Love,
Karen

Monday, October 8, 2007 1:45 PM CDT

It is the start of a new week and we'll see how things go. Justin came home last Thursday and said he had a headache and then after giving him medicine he threw up. This continued later in the evening and on Fridy morning he could not keep his medicine down. I am beginning to wonder if he is having energy issues going to school all week. He already has a reduced day but maybe should look into a reduced week. Or maybe a Mon., Wed., Fri. kind of schedule. I guess we will see how this week goes. He is also getting congested again! I need to get him in for his flu shot soon.

Conferences are coming up and I am looking forward to talking with his teachers about how he is doing in school. I know he is supposed to have a assistive technolgy screening to see if there is something out there that would be helpful to him for learning and writing.

Less than a month and Justin will be 10! I cannot believe he is that old! I am so grateful for him in my life. Even the tough days are ones to grateful for, but days like we had this last Saturday are what help make the tough days easier. We had so much fun just hanging out and I got several "I love you"s and we just laughed so much. It doesn't matter the dishes didn't get done, or any housework really because we just got to be together.

I am so grateful to have my family and friends that are so supportive. I appreciate everyone who has helped us out financially or just being a shoulder to lean on. You meanthe world to us especially me.

I hope you all have a wonderful day and God Bless all of you in your lives.
Please take a moment to sign Justin's guestbook to let him know you were here.

Love,
Karen

Thursday, September 27, 2007 1:55 PM CDT

So far this has been the hardest time Justin has had with going back to school. He has missed 5 days since the 5th of Sept. when school started due to illness and one day due to an appointment. His seizures have been elevated to about two or more a day. He just got done with a round of antibiotics for a sinus infection, he is able to go about 4-5 days with eating orally but then he crashes and starts to vomit undigested food. All his meds are hurting his tummy and I am running out of ideas on how to keep them from hurting his tummy.

Other than from all of the above on the days he feels good he is happy and fun to be around. He also came home from school and told me something his teacher did which is huge because he never tells me anything of what happened at school. I am very happy to know he is loving school so far and he is well taken care of there. They are documenting everything for me so I have it for a reference for our doctor visits. So far it has been very helpful. I appreciate all they do for us.

Well that is all from our end today. I am going to have to go out and get a picture of Justin in our new van and post it here. He just loves getting to ride the lift.
Hope all is well with everyone. Please take a moment to sign Justin's guestbook to let him know you were here.

Love to All,
Karen

Monday, September 24, 2007 1:41 PM CDT

Please send your prayers to my friend Lois and her family as they grieve through the loss of her daughter. She is free from all she has had to endure during her short time here on earth. She can finally dance and play without any pain, seizures or needing any medicine. She will be missed greatly.

Thank you,
Karen

Wednesday, September 19, 2007 10:46 AM CDT

AHHHHHHHHHHHHHHH peace and quiet! The boys are in school and the animals are sleeping, no one is asking me for anything.....

My weekend away was just what I needed except I was EXHAUSTED when I got home and had a migraine that day. That is what happens when you put 11 women in a cabin together and everyone is up until 1am laughing hysterially and talking. I don'think I had laughed so hard in a long time! Justi what the doctor ordered. I am so reserved most of the time and serious that I forget that laughter is the best medicine for all that is stressful in life.
I almost did not go because Justin was sick on Friday all day until about 3 in the afternoon. However, once he stopped throwing up I decided he was in great hands with my mom and my older son(who knows Justin's routine inside and out) and it was okay to go. Besides I really wasn't far away and they could call me on my cell phone if there was an issue. I am grateful for Ryan and my mom that they are willing to step up and help me out. I couldn't do this without them.

On Monday we got to pick up our van and I just love it!!!! It drives like a dream! It is huge though and I am still trying to get used to driving it. I am enjoying just going out during the day and sitting in it and checking it all out! I can't wait to go camping next summer in it! It is getting too cold for Justin now to go camping.

Anyways that is how things are for us right now, nice and calm....

Please keep my friend Lois and her family in your prayers. Leighann needs our prayers as she fights for her life.

My love to each and everyone who reads this,
Karen

Tuesday, September 11, 2007 5:32 PM CDT

GREAT NEWS! we got approved for the loan for the van!!!!!
I am soooooooooooo excited except forthe five years of payments. Oh well I've been paying on Ryan's braces for the last three years so this shouldn't be too bad. We should be able to pick up the van by this weekend!

This weekend is the Mitochondrial Research Guild's Annual dinner and auction that I was wanting to go and help with but it is also the same weekend as a woman's retreat with a group I belong to. It would be getting away from everything Mito for a weekend. Something I think I desperately need. The boys would stay with my mom and Ryan knows Justin's routine of meds and Justin loves to watch "Grandma's Cartoons"(she has all the cartoon channels and we do not). Plus she has lots of dirt he would probably love to dig in! I am just so torn in what to do.

Justin is doing well right now and is adjusting to being back in school. This year he is getting bussed to and from school which is nice for me that I do not have to pick him up everyday.
Tomorrow he has an apointment with GI and next week with his ped and then on the 25th is Nephrology. I am a little anxious about his appointment with GI tomorrow but will try to remember to write about it after.

Please keep my friend Lois and her family in your prayers. Her daughter was dx with Rhetts Syndrome (they thought at first she had Mito) and over the last few years she has been up and down. Right now she is in the hospital and not sure how much longer her body will hold up. Please pray for her time here to be comfortable and that her family can make the best decisions in her care and for wisdom for the doctor's treating her to give her the best care.

Take Care and God Bless you all,
Karen

Saturday, September 1, 2007 5:05 PM CDT

School starts Wednesday!!!!!!!!!!
It is getting very busy here with getting everything ready for back to school. All the forms that need to be filled out and clothes to be washed and ready to go, school supplies and changes of clothes to send to school, preparing the communication notebook, lists of meds and descriptions of each kind of his seizures (and there are many different ones), plus making sure Justin gets back onhis school schedule for sleep. We have been sleeping in a lot this summer, only because we have been staying up later. Which has been great quality time together.

Justin's dad is coming to visit again today but only for the night. I am not sure of how quality of a visit it will be as right now Justin has curled up on the couch and is fast asleep. He has been sleeping for over two hours! His nose is sounding congested, I think his allergies are acting up. Hopefully he will wake up soon and get to enjoy a visit with his dad. Or maybe his dad will "understand" that Justin's health and energy changes even with just allergies brewing.

Well, I should sign off of here and go finish the housework I never get done while he is awake; although I would rather be on a tropical, sandy beach, sipping mango juice and soaking up the sun. A girl can dream while slaving around the house!LOL!!

Hope everyone is enjoying this wonderful weekend.

Remember to sign Justin's guestbook to let him know you were here. Also please remember to keep our caringbridge friends in your prayers.

Love to all,
Karen

Thursday, August 23, 2007 11:00 PM PDT

Hey Everyone! I hope everyone has a great weekend this weekend. Justin's Aunt(my sister), and his cousins are here visiting and are leaving this Sunday:( There never seems to be enough time to really visit. They have been here since last saturday when they came down for our family reunion.

Justin has been much better except now he has these bumps coming up on his legs and they have pus inside. His ped cultured them and they grew back with staph. If the topical antibiotics don't work soon he is going to need an oral antibiotic. We were told to bath him in bleach water and so we did and putting the medicine on regularly but I haven't seen much change. One is the size of a dime or nickel and is very sore. The others are tiny and not as sore as the first one to appear. He just had a staph infection in May only it was around his g-j tube site.

I am getting very tired and we have a busy day tomorrow. Ryan has to be out at the train station by 10:45 to go down to his friends in Albany and go camping. Then Justin has PT and bloodwork that needs to be done. After that we have a picnic we are going to with my mom, and I have a meeting at 8pm. So off to bed I shall go and hope I can fall asleep before 2am.

Please keep the Cooley family in your prayers as their 31/2yr old daughter earned her ^Angel^ wings this morning. She no longer has to fight this monster called Mitochondrial Disease, she is playing and dancing in heaven with other mito angels. It makes sad for her family that they don't get to hold her in their arms now. My prayers are with them.

We are getting closer to getting our loan papers done so we can buy this wheelchair van. It won't be easy financially but with faith is God that he will provide I know we can do it.

God Bless all of our family and friends,
Karen

Wednesday, August 15, 2007 5:28 PM CDT

UPDATE*****Aug.17th,10:00pm
Justin is not feeling very well tonight and he has not kept anything down in his tummy today. Please say some extra prayers that this will pass quickly.
***************************************

Hello and what a beautiful day it his here in Washington!!!

saturday was our Mito Family Picnic and it was soooooooo much fun and nice to see everyone (Cindy, Jill, Ashley, and Dr. Saneto and his wife). Justin had a seizure right before the water balloon toss so he fell asleep. Ryan and I did the water balloon toss together and I don't think I have laughed that hard in a while. While most got totally soaked Ryan and I stayed fairly dry except my feet, only because I am not great at catching. Honestly, I really wanted to soak Ryan but since I hadn't seen him all summer I thought I would be the nice mom.
Ryan turned 18 while he was away and I am not sure how to handle him being 18. He has one last year of high school and then he will decide where to go from there. I really don't ever want him to move away from home because he is great company. I know that is selfish in thinking that way, but when your child is as awesome as mine you want to keep them around forever.
Justin had a hard day Monday, he woke up and vomitted pretty much everything he ate all weekend. Turns out he was once again filled with poop.
I have added the address to the bank where Justin's fund is set up if anyone can find it possible to help by donating so we can get a van to haul his wheelchair and him easier. I hate asking but am very grateful for any help. Thank you.
I am off to go start another round of meds. a never ending necessity.
Love to you all,
Karen

Monday, August 6, 2007 8:45 PM CDT

The days just seem to fly right by lately! Luckily they have been great days!

Justin got his new wheelchair last week and we had to go back in for a couple of small adjustments after a visit to his PT. He totally loves his new chair and it has this cool tray he uses to eat on and he just looks happy when he is in his chair. Probably because his body feels more supported and he is not having to do all of the work to try and sit up on his own. I will try to get pictures posted soon.

We had a bit of an emergency last week when his G-J tube migrated into his esophogas. I was glad it got resolved quickly and so far the new one is working just fine.

In our introduction I have posted Justins medical fund information. I hate asking people for donations and I wouldn't if we really did not need the help. I have posted recently that our car broke down and we found it is not worth us putting the money into to fix. Besides with Justin's new chair it is way too small for us now. We are in need of a wheelchair van and have found one for a decent price. But even at that it is expensive. Some people think this is just a luxury but really with all of Justin's doctor appointments in Tacoma and Seattle, and all the ER trips he has already been on this year alone it is not a luxury for us it is a necessity, especially with his new chair. We are saving money too to buy this van and hopefully we will be able to soon. We need to raise $5,000 to buy it. Please keep us in your prayers that we can buy this vehicle.

So this next weekend is the Mito Family Picnic in Woodinville, Wa and we look forward to this every year. Especially the water ballon toss!!!!!! Justin thinks it is so much fun to try and soak mom!!LOL!!!!

Thank you all for signing Justin's guestbook, he loves it when I read them to him!
Also please keep our caringbridge families in your prayers as some of these families are really struggling right now.

Thank you all and have a wonderful week!
God Bless,
Karen

Monday, August 6, 2007 8:45 PM CDT

Wednesday, July 25, 2007 0:43 AM CDT

These journals must have their own clock they go by because it is only 10:44pm here and their clock says different. Oh well I guess you can all think I am staying up all hours of the night surfing the internet, or maybe I really am up all hours hmmmmmmmmm.......

Okay now serious... This has been a pretty great week for us we attempted camping last weekend (yes attempted) and it rained and rained and rained (I know go figure rain in the northwest!!LOL!!). This campout was planned a year ago with a huge group of people and it was a blast except we got soaked and we came home a day early. The highlight of the trip was the Spaghetti Feed we had there. My friend Julie made this awesome spaghetti sauce and as soon as Justin saw it on my plate he was like I want some of that, I did not think he would like it, and he ate almost all of the spaghetti on my plate and I had to go back for more! I told him I would have to make it for him at home, he asked me why and I told him because he liked it and he looked at me and said, "ahh you're a nice mom, I love you." and I couldn't help but giggle because he was soooooooo sweet.
I really would like to take him camping again just not in the rain.
Feeds are going really well with his G-Jtube and he is flourishing.
His dad is coming up to visit in August which will be nice for Justin.
See, life is good.

Off to go start his night feeds...
Love you all,
Karen

Tuesday, July 17, 2007 1:24 PM CDT

Today would be my dad's 67th bithday, he passed away 11 years ago on the 23rd of this month. It is hard to believe it has been that long ago. I still miss him a lot. For some reason this year it is making me a little more sad. Maybe it is because of all I have been through with Justin this last year. The one thing I truely believe is that my dad is up there watching over us and protecting our family.

Justin is getting really bored and there is only so much we can do indoors. It has been hot here and he doesn't handle heat well and with my car not working plus no A/C we don't get out much at all. We really need to look into getting a new car really a wheelchair van or just a mini van on something a little bigger than our little tiny car we have now to accomodate his new wheelchair he will be getting any day now. The only problem with that is money is tight so to even come up witha down payment is hard. Sorry to ramble on about our money problems just so much on my mind right now.

Justin is doing well with his G-J tube now. The day he had it put in was a nightmare. He was in a lot of pain and he kept vomitting and I was so scared because they said nothing that he would have pain with this and they did not sedate him at all for this procedure or give him anything for pain. They also did not tell us not to feed him after any certain time so he ate up until three hours before the procedure. I know better for the next time when they have to change it out.

Ryan is turning 18 on the 28th of this month. I cannot believe my first child is a grown man. Life happens too fast and just remebering to take time out to stop and hug your child is one of the most important things to remember to do.

I am off to do those wonderful chores I have been putting off since last Friday and and then stop and hug Justin for the rest of the day.

Please remember to sign the guestbook and say hello to Justin.
God Bless you all,
Karen

Thursday, July 12, 2007 5:05 PM CDT

tomorrow is the big day! justin is getting his G-J tube in and the start of a new nutritional regimine. We see the Nutritionist at 10, Mito doc at 11 and then we wait around at Children's until IR can fit him in to get it done. Sounds like an all day trip to me.

I just want to give a special thanks to the McLane Fire Department again for helping us get to the Symposium in San Diego. We really got a lot out of going there and what an experience!

Life has been going very smooth the last week or so and I am hoping this doesn't jinx it but I am so happy that for once I don't feel like our life is in crises mode. I can't tell you how long I have been waiting for this but it feels really nice.

We are sure having quite the heat wave here and boy I wish it would cool down for a few days. I love this weather but I can't take Justin outside because he melts and is at risk of a heat stroke because of his medications.

Please remember to sign Justin's guestbook so I can read to him who has been stopping by.
Also remember to keep all of our Caringbridge Families in your prayers.

Love to you all,
Karen
P.S. New photos on the photo page!!!!!

Tuesday, July 3, 2007 10:58 PM CDT

Happy Independance Day!!!!!! (okay it is tomorrow but with how often I update it will be Labor Day by the time I get back around to this).

So I have to say the conference was awesome. I got some great info and made some hard decisions too. Like the coolest thing is that adding weights to Justin's PT could actually benefit his Mitochondria. Also we are starting him on this Mito-Tonic stuff (very spendy $100.00 a month) but has everything in it he needs and much more. I hope to see a benefit with it. Also we are going to go ahead and get the G-J tube done. I didn't want to but he needs it. His nutrition is not good and he may gain his strength back with better nutrition and maybe even walk again.

We got to meet Jack Black and I took a couple of pictures of him holding Justin. I will post them soon.

Justin and I are just enjoying hanging out together and trying to stay cool. I can say we are off to a good start this summer.

Please pray for our caringbridge friends and please remember to sign Justin's guestbook.

Stay cool!
Karen

Sunday, June 10, 2007 3:19 AM CDT

Only three more day until we leave for San Diego!!!!!!!!!
My bags have been mentally packed for over a week now (too bad not physically!!!) and I cannot wait to hit the road!

Justin had another overnighter at Children's on Friday night. I think he just loves to go up there and flirt with the nurses!!LOL!!! There is one nurse he has had the last two times we have been there and she just adores him. Of course he is such a ladies man!!! They all just love his super long eyelashes and his beautiful smile. However, as much as he loves them I just wish he would stay well for a while. He had five seizures and was vomitting shortly after falling backwards out of my recliner and landing on the back of his head and neck. Never a dull moment in our house!!LOL!! Luckily everything was okay and he was just kept for observation.

I am so exhausted right now I need to hang up this computer and go to bed. I am praying for all of our caringbridge families hoping this week brings them happiness and joy!

God Bless all of our family and friends,
Karen

Saturday, June 2, 2007 7:08 PM CDT

It is the end of another busy week and we are on the countdown until we leave for the Mitochondrial Disease Symposium. Only 11 more days!!!!!! Of course it will take us two days to drive down I am sure we know plenty of songs to sing in the car and lots of driving games from when I was a kid that we can play; or we can just go with the new technology and bring the portable dvd player and ipods. Just doesn't seem that it would be as much fun as singing until we go hoarse.

Okay a little update on this last week......
Monday Justin was having a lot of pain with his g-tube and I thought it was the granulation tissue around it so I put the cream on it and by that evening it had doubled in size. By Tuesday morning I could not touch it at all and so off we went to the ER to have it looked at because the tissue was still double in size and it was VERY weepy and extreme pain. After getting to the ER and blood work his WBC count was 20,000, another infection!!!!!! This makes three in the last month. He was tranferred to Children's in Seattle (this time he went by ambulance, with lights and sirens due to almost absent radial pulses and couldn't keep a blood pressure and he was really lethargic). So after more tests we found out he had a staph infection around his g-tube in the granulation tissue and he also was swabbed for strep and that came back positive! (Ryan and I had strep the week before, we tried taking every precaution for Justin to not get it). He only had to stay two days and now we are pryaing for allof us to stay really healthy for our upcoming trip!

Please pray for our caringbridge families there are so many going through a hard time right now.
Don't forget to sign Justin's guestbook so he knows you came by to visit him.

Have a wonderful week ahead!
Karen and Boys

Wednesday, May 16, 2007 12:21 AM CDT

The last few weeks have seemed to fly right by. We thought Justin was going to have to get a G-J tube soon but I believe through prayers that his tummy has began to tolerate food again and he won't need to get it right away. I am so happy that God has answered our prayers. There are so many more problems with a G-J tube so we would like to just stick with a G-tube.
Justin is having some huge behaviorial issues lately. He is biting, pinching, kicking, punching, and talking back. I believe this is due to frustration and when he does not get his way too. He is also putting everything in his mouth like a toddler (which he never did before). He is exhausting right now.
Over all though life is great and I fel so blessed to have the friends and family I have.

Please keep praying for our family, for Justin to continue to tolererate regular foods and that he stays well.

God Bless All of You,
Karen and Boys

Friday, May 4, 2007 1:35 AM CDT

Hi! I should have updated this last week but last Thursday Justin decided that a helicopter ride would be lots of fun and to scare mom to pieces. He has been having lots of bouts with severe stomach pain and vomitting and with this incident being no different we made our way to our local ER. After six attempts (IV Therapy team) they finally got an IV in and got blood for usual tests. His WBC was 36,000 and they were concerned with all his medical history so they flew him up to Children's in Seattle. Once there he spiked a temp of 104. and that came down with Tylenol. We ended up staying until this last Monday when he had a Gastric Emptying Scan done only to show he is delayed in his digestion. So we have been home and Wednesday he was vomiting again and severe stomach pains and I called the GI to figure out what I am supposed to do now. Thursday after the whole team met They called me back and informed me it is time to do a G-J tube as he is having so many problems.
I HATE MITO !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This disease has been progressing so fast lately it scares me and I can only imagine how Justin feels. I want to curl up in a corner for a day and just cry. Right now I am going to go to bed so hopefully I can wake up in the morning and send Justin to school. He has not been all week. We both miss it.

Sweet Dreams everyone and I will update when I know when the procedure is going to be or if anything major happens before then.

Karen

Monday, April 23, 2007 7:32 PM CDT

Annnnnnnnnd the other shoe drops...............

Yes everything had been calm and wonderful until about right after we left for my sisters. I was so enjoying the calmness...
Justin's behavior has gotten out of control, it reminds of the behavior issues we were having a year ago. On top of that when running feeds or sometimes giving him meds he says it hurts his tummy. He has had many episodes of vomiting in the last week and lots of crying from tummy pain. He is being tested for H-pylori right now and hopefully we will get those results back soon. He has been having lots of seizures on top of everything else and he just looks so tired all the time.

On a good note the Spaghetti Feed for Justin is on May 8th and there has even been a bank account set up for him at Key Bank called the "Justin B. Wishing well Fund" for anyone to donate to who would like to help us get to the symposium. I am looking forward to the "ask the Researcher" track and the one on Palliative care, also there will be one on adapting your home. Also meeting lots of families who are living with Mito will be great.
With all of the changes Justin has been going through in the last few months I feel as if my head is swimming and I don't know where to turn. It just seems as if none of his doctor's will manage his care they all just want to treat the symptoms, except when the symptoms come up I never know which one to call. So I usually just go to the ER. How frustrating. Maybe the Palliative care won't be such a bad thing. Just a scary word.

Hope you all are well and happy.
Love to you all,
Kaen and the Boys

Thursday, April 5, 2007 5:00 PM CDT

The sun is shining the birds are singing and life in our house is calm!

We are getting ready to go to my sisters house in Eastern Oregon for Spring Break. Yes, she was just here but this opportunity doesn't come along every day where we can see each other. Our kids get to spend Easter together and that is sooooo cooooooool!
I can't believe this is the calmest month we have had in a long while in regards to doctor appointments and stuff. He only has psyiatry and neurology.
Justin is still having seizures a few times a week but they seem to be less than they have been. The constipation is still a battle but not unmanageable and a;though he was home sick Monday he did not have to go to the ER so that is good.
Justin did however have a little accident last Saturday. He decided to take his sheet off his bed and figure out why his bed "makes noise"(I think he will be a great detective!). He found the plastic mattress cover and proceeded to remove it by ripping it to shreds and in doing this he fell backwards off his bed and cut his head open. So yes a quick trip to the ER and found it was luckily a surface wound so yeah no stitches!!!!! However we are getting rid of the captains bed frame he has, lowering it down, and adding a rail to his bed. This isn't the first time he has fallen out of bed but the first injury from it.

There are some caringbridge families that are in need of your prayers. Some who have had a loss recently and others are in the hospital and others are very ill at home and are waiting for testing.

Please stop by and sign Justin's guestbook so he can know who has stopped by to check in on him. He loves hearing who all has stopped by.

Have a Great Week!

Karen and Justin

Monday, March 19, 2007 1:24 AM CDT

I finally changed the picture! This is Justin and his cousins Caleb and Matayah last year. Justin still looks the same!

I keep telling myself I will do better updating but I just haven't been able to do that.

So we are exploring how to have fun.......Justin and I went for a walk tonight with the dog and after 8 months of living in this neighborhood we actually saw it in the daylight (the last time we walked around here was Halloween, that doesn't count), last Friday we did a family outing to Justin's school carnival (what a blast!!!), I got Ryan and his girlfriend and my mom to go too. (For those who don't know Ryan is Justin's big brother.) One other thing I did with Justin this week is I held his hands and got him up and we danced!!!!!!!!! Okay not really dancing more me holding him up and him jumping!LOL!!
I really have been taking life for granted and have been so depressed. I realized i had been living IN this disease and not with Justin. So I now have vowed to not live in this disease but to live with my son who has this disease. Does this make sense?

I want to share some really cool things happening here...
The Mitochondrial Symposium is coming up in June and we have really been wanting to go to it. I was talking to a mother at Justin's school about it and she went home and looked it up and then the next day told Justin's aide that we had to go. Thanks to this wonderful mother, a terriffic school and PTSO, and the local Fire Dept. we will be going. Also, it doesn't stop there......Justin is getting a new wheel chair in the next few months and I had been trying to find out if there are any organizations that help low income families in purchasing a wheelchair accessable van or even we just need a more reliable car that is bigger than what we own, we were referred to a charity and they sent us an application to recieve a donated car. I truely feel God's Blessings in our life. I do know that if I hadn't changed my life none of this could have been possible! I finally feel like things are falling in to place and that life doesn't have to be such a struggle. Not to say that there won't be more obstacles but i feel as if they don't have to be mountains.

I really am grateful for the family I have, friends and the community we live in.

Justin has PT this week and Nephrology. Then my sister and her kids are coming for a visit this Friday!!!!!!!!!!

Hope I didn't bore you all too much and I tryuely pray for God's Blessings to touch you lives too.

Love to All,
Karen

Friday, February 16, 2007 5:17 PM CST

I think things are starting to settle down here!YEAH!!!!!!

Justin has been dealing with a few migraines the last few weeks and yesterday he finally had his MRI/MRS done. I am on pins and needles waiting for the results. The good news is that since we did the bowel cleanout he has not had the vomiting like he had all through January.

We also got really great news from a parent at Justin's school. Her husband is the fire commissioner and the local fire department is going to do a spaghetti feed to raise money for us to go to the symposium. We are so excited! We still have to set a date and such so after their mid-winter break next week the planning will begin. I feel so blessed to live in such a great community. I love Justin's school and all of his teachers and the parents there are amazing! The kids that know Justin are always giving him hugs and he has his own group of lunch buddies that take turns eating lunch with him. He is truely loved! I know that when we moved to Olympia from Portland that it was God's handiwork. We got the best doctors that care about Justin and a diagnosis, and wonderful friends.

Did you read this???? I think I have a positive outlook today!LOL!!! God is truely working miracles here!!!!!

Please pray for all our families here. There are many struggling and are in need of support and love.

GOD BLESS YOU ALL!
Love Karen and Boys

Saturday, January 27, 2007 4:21 PM CST

Okay maybe I can update quickly now.

We are on day four with no vomitting (YEAH!!!!!!) and he seems to be finally getting out of the cycle he was on. He still has moments where he get a little pale but that is okay. After 5 ER visits and 3 hospital stays since Dec.15th I am ready for this break. He literally has had 8 different days of vomitting since since Jan. 1st.

So after our visit with the Mito doc we found that Justin's increase GI issues are most likely related to increased mitochondrial dysfunction and also the movements that we are seeing that look like seizures that the EEg said weren't seizures are alos increased mitochondrial dysfunction.

We also saw a Nephrologist and she did dx him with RTA (renal tubular acidosis) which we suspected about a year ago. It is from the Mito. Also they ran UA and came back he is having lots of calcium in his urine so now he has to be on a low sodium diet and increased fluid intake.

Then he has had an increase of seizures and I know it is because his meds have been all messed up from all his illness. The bad part of that is he is having seizures where he stops breathing.

Also he is having an increase in liver enzyme counts so we are watching that.

The good news is that he is smiling today and eating very well even with the change in his diet. He is tolerating his feeds better too since we changed him to the peptamin jr. formula.

Well off to do the laundry that has been piling up since last week (We have all had a stomach bug this week so nothing got done.

I pray everyone has a great weekend and will try to update again soon.

Love to All,
KAren and Boys

Wednesday, January 24, 2007 2:22 AM CST

Please forgive me for the lack of updates but This last month has been anything but easy. I really am too tired to go into all of the details right now and maybe after our neuro and nutrition appts I will come home and update since I think that is the last of our appts for this month.

I feel as though my head is spinning and I can't stop and I am afraid of searching for answers because I may get too much information.

I am off to rest and be ready for Wednesdays adventures.

Love to All,
Karen and Boys

Saturday, December 30, 2006 0:53 AM CST

Where to start...... How about two weeks ago.. Justin had a visit to the ER for vomiting that normally now I could keep him home but this time was an exception as none of my interventions worked. They gave him stronger anti-nausea meds and fluids and nine hours later sent us home to no power after the big wind storm the night before. So that night we also had to celebrate Christmas with Ryan becasue he was going to his dad's house for winter break the next morning. Luckily Saturday morning we got our power back. So by Sunday Justin developed a junky nose and of course you guessed it a sinus infection. We started anti biotics two days before Christmas. On Christmas eve day he started having brown colored urine and by 9:00pm Christmas day he had huge amounts of blood in his urine..so of course back to the ER we went and were there until 3:00am. They couldn't find the source of the blood except that his ureter tubes were enlarged and maybe because of his body reacting to being sick. So yes now we are adding a urologist to our list of doctors and are now awaiting the referral. Last Christmas was a abcessed tooth so at least this time he wasn't in pain.

Okay enough medical update.....
The wind storm was pretty harsh. Some apartments about a mile from where we live 7 units had four trees fall into them and now they are condemned. Power was out in some areas for days. There were branches every where you looked and as intense as the wind was I thought it would blow my car away (okay I hoped for that then I could get a new one).

Justin had a great Christmas although I think he got bored opening presents because there were so many. Santa brought him a child size recliner and he LOVES it. He will sit in it and tell me to pull out the foot rest and then he gets a blanket to cover up with and watches cartoons. He is soo cute. I have got to figure out how to change the pictures so I can share them with you all.

Well time to go the dog has a vet appointment in the am and I have two boys to get ready in the morning. I am watching my friends son for the weekend. He is such agood friend to Justin and is a big help.

There are so many families needing our prayers right now. there have been four little angels that went home to heaven in the last month. Pray for their families as they try to live without their precious angels. There are also many that are really struggling to fight this Mito monster.

God Bless Everyone!
Love,
Karen, Ryan, and Justin

Monday, December 18, 2006 1:02 AM CST

!!!!!!!!!!!!!!Happy Holidays!!!!!!!!!!!!

So much going on and yet cannot find the words to write. After being with out power this weekend and Justin's 9 hour trip to the ER Friday I get online to find another little girl has earned her wings after battling this disease. I didn't know her personally but it just breaks my heart when this disease takes these children from their families. It makes me think of Justin and then I start to wonder why. Why do they have to go through all of this and why can't we cure them and why do people not listen when we talk of this disease.
Okay I don't want to be a total downer....
Justin got to try out power wheels last week; he did pretty well if you don't count the two big dents in the walls at the PT clinic. He really had a hard time though with following directions and remembering to take his hand off the controls. It was nice to see him independant getting around. He was able to get himself on and off the elevator and he practiced a couple of small doorways and also a hallway with people in it, he got a little nervous in the tight palces and around the people. We are going to try again this week too.
We are looking forward to Christmas and hope everyone enjoys the hloidays and please pray for the families who have lost their angels and for the families that are fighting these diseases.
Please sign the guestbook to let Justin know you were here.

Love and Hugs,
Karen, Ryan, and Justin

Friday, November 24, 2006 4:10 PM CST

We hope everyone had a wonderful Thanksgiving! I was thinking yesterday about all of the blessings we have recieved and I am so grateful for our lives. I feel truely blessed to have the friends and family we do and all of the support from all.
In walking down this path and having all this medical stuff thrown at us I think we have fared pretty well. Somedays are better than others. This last month we have already been through several doctors appointments and test and hopefully after next weeks appointment with our Mito doc things will slow down. We do have to do a follow up in a couple of weeks for the sleep study we did and then I think nothing until January HOORAY!!!!!!
We have stopped the weaning from the Topamax and have gone back up a dose. I guess it just isn't time for that to happen.
We are starting our planning to go to the UMDF symposium next year it is in San Diego. My mom, myself and the boys will go down and then on our way home stop at Disneyland for a couple of days. Not sure how we are going to do this financially but if we can we will. I will leave it in Gods hands. I just want Justin to enjoy life and all the fun things he can while he can. He is getting weaker and really struggling with walking. We are going to try him in a power chair this week and see how he does. His teachers are noticing how he is losing motor skills and I have noticed even his care provider has noticed and I am really struggling with the acceptance of this. I keep wanting to search and find ways to "fix" what is going on and unfortunately it is just the nature of this disease living in his body.
I am still trying to figure out how to resize photos so I can change our home page photo to one that is more recent. I hopefully can do that by Christmas.
Time to close this book and please remember to sign Justin's guestbook so he knows you were here.
Please keep all our caringbridge families in your prayers some of them are not doing really well right now and everyone can use some extra prayers as we walk the journey with our special families.

GOD BLESS,
Love, Karen, Ryan, and Justin

Monday, November 6, 2006 5:12 PM CST

JUSTIN IS 9 TODAY!!!!!!!!!

Happy Birthday to my sweet boy! I love you so much and would not trade a moment of this journey for anything. I believe all you have had to endure has made you stronger. I really wish that you didn't have to go through all of the medical stuff but it has given us a bond stronger than steele. I am so proud to be your mom. Every laugh, tear, angry moment, and cuddle has been a true blessing.

Thank you God for giving me a perfect son.

Justin I love you always!

Mom

Tuesday, October 24, 2006 11:27 AM CDT

Hello everyone!!!!!

I know it has been awhile since I updated I just haven't felt up to it. It seems like I never have anything good to say. We are still inthe middle of a LOT of appointments. This month alone we have already been to his Neurologist, Pulmonologist, Regular Doctor, and a Psyiatrist. We still have the Eye Doctor on Friday. Then we get a break until November. Then he has Orthopedist, swallow study, sleep study, and his Mito Doctor. That doesn't include Ryan's two visits to the orthodontist scheduled for this Thursday and next Thursday. He is getting molded for a spreader and these metal bars called a herps device or something like that.

Really all in all Justin has been doing pretty well. He has had a few vomiting episodes and we were able to keep him out of the ER so that is GREAT news.

I am going to try and change the picture on the intro to a more recent picture so wish me luck.

Please keep all of our caringbridge families in your prayers as so many are having a difficult time and withthe cold and flu season upon us we need to pray for good health.

Love and Hugs to all,
Karen, Ryan and Justin

Sunday, October 1, 2006 1:21 AM CDT

Another month has passed us by and I just blinked.

I am so grateful for Justin's g-tube. Our life has so much less stress in it that now I don't know what to do. I can't believe how much of our days were so consumed with stress. Also two weeks ago Justin had another vomiting episode at school and I brought him home was able to get the anti nausea medicine in him and keep him hydrated and out of the ER. What a blessing.

Our camping trip at the beginning of September was lots of fun. They had a luau theme and the lady who prepared all the food made these delicious shish-k-bobs(sp) and my little Justin who is such a picky eater ate 4 of them! They had meat and all kinds of peppers and pineapple and mushrooms, onions and even olives and he ate every bit! I never told him what all was on them he just loved them. I have even found he loves sweet and sour chicken. He has really expanded his taste buds. Our GI thinks it is becasue we have FINALLY got his Gi issues under control. Only because he is on the right combo of medicine but if it works I will keep him on it.

Last night Justin had another of his Partial Complex seizures and we hadn't seen one of those since the ends of July. However when he has these episodes he looks like some one who has had a stroke. It does go away after a while but he couldn't even put two words together for about five minutes afterwards, and when he did talk to me it was like the right side of his mouth would not work. Just one more thing to talk to the neuro about on the 9th.

We are praying for all of you out there and hope your days are as blessed as ours.

Love,
Karen and the boys

Thursday, August 31, 2006 0:31 AM CDT

I keep forgetting to update. So much going on with school starting soon and Ryan is finally home from visiting in Oregon. Besides all of the regular day-to-day stuff they days just fly by.

Okay so last week we went to the orthodics people and Justin has lost quite a bit of range since he refuses to wear his AFO's or night boots. He is only 9 degrees off from where we started on his right foot. They want us to see an Orthopedist. Hopefully we can get in soon but that means another trip to Seattle or possibly Tacoma depending which doc they get us into. I guess we should be used to them by now. It is just hard in this weather because if it is just a slight bit too warm he overheats in our car. We have no A/C and with his meds they don't allow him to sweat which makes for a bad combination with his natural inability to control body temp.

Also last Friday Justin got his Mickey button and at first I really missed the PEG tube but I am adjusting to the button. He did really well with the whole procedure. They were so great and there was no pain involved. The only thing I am concerned about is that after fourteen hours of no solid food he still had food in his stomach. We go back to the GI next week so I will be bringing this up.

I finally recieved Justin's EEG reports in the mail and I am even more confused by them. After I get some clarification from the Neurologist I will post the actual results.

We are gearing up for a trip to my sisters in La Grande this weekend to get Justin's dog. Sparky has been on vacation for the summer. I was struggling to walk the dog and Justin too so he went on vacation. Then the weekend after that is our next camping trip. We are not going as far away this time so I am more relaxed about this trip.

We are pruying for you all and please stop by and sign our guest book to let us know you were here.

Love you all,
Karen, Ryan and Justin

Thursday, August 10, 2006 2:02 AM CDT

See time does fly! We have been enjoying this summer and BTW our camping trip was soooooooooooo fun. Justin kept trying to adopt my friend and her family. I do have to admit she has two boys around his age so he was happy to have someone to play with. She also gave him a cup filled with little plastic army men and he carried that cup around for a week! We are going camping again in September. I know crazy! I had so much help from my friends and even ones who didn't know him came up and asked about him and so I got to spread the word of Mito and how people can help. What an awesome gift!!!!!!

On to EEG news...... I was told it was very abnormal and though we are not changing treatment at this time I hate the fact that it is worse. His seizures are now generalized meaning they are not focused in one spot in the brain but that they spread throughout the brain. He is also struggling with walking. He cannot walk unaided more than a few feet especially outside. He has to have his walker or chair. I have also noticed he is having more moments of where he is having trouble holding his head up. If he is the slightest bit tired is when I notice it the most. His jerks are worse and I am really worried. I hat this disease and it seems like every little symptom makes me jump.

That is all I have to update now and I pray for all of our CB friends and families as we walk through this journey.

Love and Hugs,
Karen and Justin

Thursday, July 27, 2006 5:17 PM CDT

Okay this should be short too.

We are getting ready to go cmping this weekend and I am soooooooooo excited to go. I am taking Justin and luckily we will be with alot of friends. I have never ventured to do this and I feel so blessed to be going where a bunch of people we know are going to be too. I forgot how much work it is to go camping. I still have to get my barbque from my moms and our cooler plus do laundry and all that fun stuff.

I did call our Neuro to make sure it is okay to take him up so far away from an ER but they gave us diastat just in case his seizures get bad.

My computer monitor is on the fritz and I had better get stuff done.

I hope you all have a great weekend and pray we get back safe.

Love and Hugs,
Karen and Justin

Friday, July 21, 2006 2:03 PM CDT

The EEG went well and I know several seizures were recorded. Now the hard part is waiting for the results.

Other than that we are getting ready to go camping next weekend. Justin is soooooooo excited to go camping; he loves to sleep in a tent!!!!!

Well got to run!

Love,
karen and justin

Sunday, July 16, 2006 0:07 AM CDT

We are slowly getting settled into our new home. I wish the mailmen would hurry up and forward our mail. I don't think they realize that mail is important to some of us. I have been waiting for my last paycheck from babysitting for my sister and was hoping it would get here before we go spend the two days in the hospital for a 48hr video EEG on Monday but no such luck. There is my gripe for the day so now ....moving on........

Justin has been doing pretty good just wish the seizures were better controlled. He has been doing lots of head drops lately and also his myoclonic jerks have been pretty rough too. Not sure if the head drops are seizures or what is going on with him. I guess we will know more after this EEG.

Wow I really don't have much to write except please send prayers our way so that this EEG will give us some more answers.

Love and Hugs to you all,
Karen and Justin

Friday, July 7, 2006 1:08 AM CDT

Alright, alright, alright I will put the boxes down and update.

Yes I am still unpacking and if I had known I had this much junk I would have never moved! Actually that is not true....I love our new home, except the six, yes six, children that live above me. All day long I hear THUMP, THUMP, THUD over and over. I love children but not all day long over my head. Okay that is my whine for the day.

Our apartment has three bedrooms and Justin is loving his, I can hardly drag him out of it. He will play in there for hours of course when it comes time for bed he either wants me or his cousins to come over and spend the night in there with him. I will have to get a picture of him in there and post it to his site. I also have a really cute picture of Justin and my niece sleeping in my mom's outdoor swing that is soooooooo cute and when I learn how to use my scanner my sister gave me I will post that too.

Things health wise have been okay just he has been fighting this nasty nose stuff and not even antibiotics are helping. I recently have noticed him having seizures in his sleep whjich worries me. Luckily he has an EEG on the 17th. It is actually a 48 hr one and boy I am sooooo looking forward to being cooped up for days with a kid attached to wires and gets grouchy easily. Hopefully we will be able to catch all his seizures or see if there is anything new now since we can't control his seizures with all the meds.

I am very tired now and don't want to keep rambling as my fingers are getting faster than my brain and i keep having to fix almost every word I type.

I hope everyone here is doing great and we are sending out prayers everyday.

HUGS to all,

Karen and Justin

Saturday, June 17, 2006 11:16 PM CDT

It is official we are moving in two weeks! I am soooooo excited I can't wait to get out of here. I really Justin's mobility issues will be benefitted (is that a word)in the new place. We have been packing up most of the day today. We had to get Ryan's room done since he is going to his dad's on the 25th and won't be here to help move.

Justin has been doing pretty good a few seizures but other than that he is great. He is up to 44.6 lbs and he is loving helping me bolus his pediasure through his tube. I don't know what I was so worried about. Now I can't wait to get the Micky-button.

We are sending our thoughts and prayers to all of our friends and family.

Love, Karen and Justin

Monday, June 12, 2006 9:43 PM CDT

Do you ever feel like you are constantly chasing away a virus or infection?

Justin JUST got over a sinus infection and I swear he is getting another! Any time he starts to get a yucky nose I know it is a sinus infection he never just gets a common cold.

Well we are in the process of moving, and by process I mean we are waiting to get approved for a handicap accessable unit. It is three bedrooms and the bathrooms are so big he can use his walker in there. They are also going to install the hand bars around the toilet and in the shower so he can have something to hold on too. I wish we could pad all the walls and corners too! He will have his own room finally and so will I! Just a few more days until we know for sure!

On another note Justin had over 12 seizures this last week and seven of them were yesterday! His neuro upped his Tegretol again. I am so worried about all of his seizures and I can see where it has an effect on him cognitively for a few days or longer. I can't wait until he gets his EEG in July! Maybe we can get some answers to the change in his seizures.

Well got to go put Justin in a bath before bed. I will update again when there is more to write about.

Love Karen and Justin

Monday, June 5, 2006 0:38 AM CDT

Well Justin just spent the last few days at Children's Hospital in Seattle. EARLY in the morning Thursday Justin started throwing up and could not keep anything in his stomach whether I gave it to him by mouth or tube so I took him into our local ER. After 7 hours they transferred him to Seattle only to find he was completely impacted with poop. He was full top to bottom. This constipation stuff STINKS! It is hard to find the right balance between constipation and diarreah. I will say I hope we never have to go through this again! Cleaning up induced bms is never fun!

Okay enough of the gross talk. Tomorrow I have to decide which apartments I want to try to move to. Our apartment now is too small and I think we need a change. So I am trying to decide if we want to move to an apartment tha tis 2 bedroom but much bigger than where we are now and has a pool but we can only keep two of our pets, or there is a three bedroom and we can all have our own rooms and keep all our pets but has no pool. Now I have been OBSESSING over this for the last two weeks. I think we will most likely go with the three bedroom. The only bad thing about this is that Justin would most likely have to change schools. BOOOOOOOOO!

Justin's IEP meeting is Tuesday morning and I will talk to his teachers then. I hope his Aide will be able to transfer with him. I may petition for him to stay at the same school as it would be harmful to his education to change his program.

I think that is it for us today. I pray everyone is doing well and we love you all.

Karen and Justin

Monday, May 22, 2006 11:36 AM CDT

I am praying things start to settle down here. Justin got his PEG tube Friday and it has been a roller coaster since. He did wondedrful for the surgery and the first night was good. He was up that evening helping put his seizure meds through. Saturday morning he asked me if he could keep his tube. He seemed pretty happy to have it and I am relieved he has it.

When we were about to leave the hospital Saturday afternoon he started crying like he was hurting really bad, we thought maybe it was from gas or he was constipated from all the pain meds so I went ahead and took him home hoping it would pass soon. He did well on the ride home even when we had to stop and pick up the feeding pump and pediasure he didn't seem too bad. He slept most of the 2 hour ride home. By the time we got home he started having lots of pain and I am so glad we already had pain meds, but he told me he didn't want his tube anymore. I explained we couldn't go get it taken out and it would get better. However by Sunday he was back in the ER with a fever and pain. I think they may be unrelated though. The doc there felt that his PEG could be too tight so they relieved some of the tightness but the fever hasn't gone away. He was up to 102.4 last night. I have been giving him pedialyte through his tube and he is doing better this morning. He is still a little sore to move around and he isn't eating by mouth but he will. I figure by tomorrow he may be singing a different tune and ready to play and eat by mouth. He is taking a little fluid by mouth which is good.

Wow this turned into a book. Sorry so long but what an experience and I am not even phased by it and freaking out. We have made it through our first delimma with the tube!

I hope all of you are doing well and plaease pray for the families that have recently lost their little angels. May Jesus hold them in his arms and comfort them as they grieve. Pray for all the children here who are doing well and not so well they all need to be lifted up to Him.

Thank you and God Bless. Please sign our guest book to let us know you were here.

Love,
Karen and Justin

Monday, May 15, 2006 3:18 PM CDT

I guess I should update. Everything has been going pretty great. Justin has his g-tube surgery this Friday the 19th. I am nervous but am comfortable with this decision. He is ignoring me every time I bring it up.

I have so much I want to say but I have to run now that I look at the clock. Sorry I will write more tomorrow.

Karen and Boys

Monday, May 1, 2006 0:27 AM CDT

I have needed to update but haven't had the time or energy to do so. Justin is giving me a hard time about taking his meds again and so Friday I took him to the ER so someone could help me because he was getting combative and stressed out and he will seize when he gets like that. It was a very long night. I am so glad we only have three weeks until his g-tube placement.

On another note he has to have eye-movement tests done in May and also after our visit to the neuro last week he will be getting another 48hr video EEG in July. We are also switching one of his seizure meds for a new one called Zonagran. I guess that since his seizures aren't under control anymore that means there has been progression with them. Not sure if it is disease progression or just a progression of his brain changing.

Despite all of our struggles lately Justin still never ceases to make me laugh. Tonight on our way back from my mom's house Justin asked me if we could live in a pineapple like Spongebob. Of course I had to explain to him that in reality pineapples are too small for a family like us to live in that is why we have an apartment. Of course he had to ask why and I told him that only cartoon characters can live in a pineapple under the sea because they are not real. I think he was satisfied. Later he came to me after he was talking to his brother about dolphins and asked if he could have a pet dolphin and keep him outside in back of our apartment so his friends could come over and feed it. I think he was remembering going to Sea World in Florida on his wish trip and getting to feed the dolphins. I just hated telling him that we can't keep a dolphin here. Sitting here and I am laughing becasue I can just imagine him when he is all grown up living in his pineapple with a pet dolphin, his dog and all of his imaginary friends (I haven't gotten to those yet). He knows his imaginary friends are pretend so I am not worried but I think it is rather cute. He will ask me if they can spend the night and if I can feed them and of course I play along.

I am feeling really grateful for the opportunity to be his mother and no matter how trying it can be at times I am learning how to be a better person.

We are praying for all of you out there who are here and walking through life on this precious journey of joy and tears, pain and happiness, love and anger as we watch our loved ones with such courage.

God Bless You All,
Love Karen and Justin

Friday, April 21, 2006 4:15 PM CDT

It's Friday at last!!!!!!!! Not that we have any big plans but it has definitely been a long week. We have all been sick and found out this morning Justin has an ear infection. He woke up screaming at seven this morning that his cheek hurt. I kept trying to look in his mouth but there wasn't anything in there that looked painful. He then started poking at his ear. Right now he is being difficult to and for everyone. I keep trying to remember that he is not feeling well.

Keep Justin in your prayers he has his g-tube surgery on May 19th

Got to run.

Hugs,
Karen and Justin

Saturday, April 15, 2006 0:17 AM CDT

UPDATE: PEG-tube surgery scheduled for May 19th.

HAPPY EASTER EVERYONE!!!!!!!!!!!!

There isn't much to report this week. I am waiting to hear back from the surgery scheduling people for the G-tube placement. I am open for anyday after the 14th of May. I am going to Klamath Falls to visit my best friend without the boys on the 12th and don't want to do the surgery before that.

We are getting sick again and I hope Justin doesn't get it too bad. He is just looking really tired and today he just wanted to sit in his beanbag chair and veg-out. He has been sneezing and coughing but not as bad as my neice. My chest is feeling tight and I am coughing alot too. I hope this passes quickly.

I am ready to go veg-out myself and I can't wait to spend all day tomorrow with just my JustyBear! I haven't even decided what we are going to do but I am thinking maybe a movie or just renting videos and snuggling all day. As long as I don't have to answer my phone or door all day I will be happy! Ryan is gone until Sunday night and Justin and I need some quality time together.

We are sending our love and prayers to all of you out there and please remember those who are visiting club med and say extra prayers for them.

Love,
Karen, Ryan, and Justin

Sunday, April 9, 2006 1:48 PM CDT

I found out Friday that the doctors are willing to just go to a g-tube instead of th ngtube first. I am happy about that. I am appehensive though, Justin has been eating so good the last few days. I don't think I have seen him eat this well in a long time. I do know that this isn't a permanent thing with him eating so well. It always comes in spurts, and if he gets sick he just gets to where he doesn't eat or drink much thus starting the viscious cycle all over again. Also Justin's doc thinks he may have Renal Tubular Acidosis too; not what I wanted to hear right now.

Other than that not much else has changed or been going on which is great!

Tomorrow Justin has an Opthamology appointment in Seattle with a new eye doc that knows mito. I am praying he has no bad news for us. I am hoping for good news and that Justin cooperates with the doc.

I guess that is all for now Justin is in need of a bath and needs constant supervision in the water.

God Bless you all and have a great week.

Karen and my two wonderful boys

Sunday, April 2, 2006 6:51 PM CDT

Well it has been decided that Justin will be getting a feeding tube sometime around the first week of May. This has not been an easy decision for me to make but I know in the long run it will be the best thing for his health. Maybe we can eliminate hospital stays and ER visits.

Other than that everything else is pretty much normal as ever. We had to increase the Keppra up to 10ml twice a day. We still have no control over his seizures he had four yesterday and a total of eight since Tuesday. I wish I could make them stop. He has no idea he is having them and so it is hard to watch him as he is postictal afterwards and he thinks he just can't talk right or know how to talk.

School for me is being put on the back burner until after his g-tube surgery and the summer is over. I think it will be easier after we get him as healthy as we can and maybe he will be more stable. I hated all the absences I was having to take but I will never put my job as his mother before anything else.

I hope aftere you read this page you will stop by and sign his guestbook. He loves knowing you all are out there.

God Bless,
Karen and Justin

Saturday, March 25, 2006 11:13 PM CST

I haven't had time to update this last week as Justin was in the hospital from last Sunday to Thursday afternoon. He got really not sure what happened. I think it may have been a virus tha tslowly crept up on him and then developed into a sinus infection. He was on IV fluid the whole time we were there. I am glad the ER doc admitted him. I took him in that morning because he had a little temp and he threw up twice, he also had a seizure, and almost no urine output that morning. I had no idea he would go downhill so fast. When we got there he was talking to people and being silly putting his puke bowl on his head (it was clean. We went back almost immediately because thankfully they were slow. From there he went down fast. When they tried to draw labs they couldn't hardly get any blood and it was clotting as it was coming out. Plus Justin isn't a hard stick and they had a hard time getting his veins. So this led to a very LOOOOOONNNNNNNG week! He is still not back to his normal self but he is SLOWLY getting there. He has lost 4 pounds! Not Good! Before we left Thursday his ped told me that I need to seriously consider a G-tube for him. I made an appointment for next week to see the GI. I am not sure how I feel about this right now. However the Mito group has been a real help to me regarding this issue. I know that this is probably the right thing to do for Justin I just never thought we would really have to do this.

Ryan was found to have a Coq10 deficiency so we are supplementing him now to see if it helps him. Oh the journey never ends it just gets different.

We hope all of our caringbridge families out ther eare doing well and we are praying for you all.

Lots of love,
Karen and Justin

Saturday, March 18, 2006 9:18 PM CST

Here it is Saturday night and we are a housefull of sickies! Justin is starting to run a low grade temp, Ryan came home from school Thursday and stayed home Friday not feeling well, and lucky me I feel like someone ran over me with a bulldozer!

I interviewed our first person to do personal care hours but I am not sure if she would be up to the task of how much supervision he needs. We have a whole list of people to check out though. I never thought I would be having to do this. It is hard to have someone come into our home and help out. Okay maybe not hard just weird.

Justin is now classified as having intractable seizures since his seizures aren't controlled by the three seizure meds he is on. He has had three in the last two days. But that is only part of the ones he has had in the last week.

It is a big probability that Ryan has Mito too. The only abnormality they found in his blood work is low coq10 levels. He has started taking Coq10 60mg twice a day. He could also only have a coenzyme q 10 disorder. If more symptoms come up than I think we will see if further testing is needed. Right now no muscle biopsy for him YEAH!

Gotta run Justin is starting to stir and I hope he doesn't vomit tonight.

Love, Karen and the boys!

Friday, March 3, 2006 1:00 AM CST

Well things are looking up! I found out today that we will be getting 39 hours a month in personal care hours!!!!! Now I just have to find a provider. That will be the hard part.

Justin is still having some seizures but seem to not be so often. He is getting back to his normal self where he is more fun loving and has been taking his meds better too.

He is really enjoying the Mercer Mayer books and I think I have read our collection to him 10 times in the last week or so. I really enjoy our book time and I think it has to do with being able to see the light at the end of the tunnel. I just kept praying for God to help me through this hard time and He answered my prayers as I feel we have reached the other side of this valley.

March 13th Ryan goes back to see Dr. Saneto and I think we will talk about where to go from here with Ryan. I am a little scared but at the same time am excited becasue maybe we can get some unknowns answered. If Ryan has Mito than it will open the door for more testing for Justin as it will be considered Maternally inherited and maybe we can get a more concrete answer.

Other great news is that my sister is moving here with her three kids! Justin and Ryan will be able to see their cousins on a regular basis and grow up together. Until now they have only been seeing each other once a year twice if they are lucky. When they get here I will take a picture of all of them together and put it on the site!

Time to finish my homework.

We love you all and please sign our guestbook!

Love,
Karen

Thursday, February 23, 2006 4:37 PM CST

This has been one tough week! However we went to the neuro yesterday and he got to witness one of his meltdowns! In fact Justin kept slapping me and pinching my arm so he restrained him for me. Not a fun visit. However I have more info of resources and Justin is having an evaluation for personal care hours next wednesday. I pray we get some help soon!

I am still plugging away at school and I am going to continue with it until summer and then I have a break until Fall Quarter.

I really want to go to the Mito Symposium in June but have no way to get there financially. There is going to be a workshop on the neurological manifestations of mito and I am really interested in hearing that. Plus there are others too. I wish they would bring it to the west coast or at least closer than Atlanta. Colorado would be nice or Idaho, even Nevada.

Well gotta run homework awaits us!

Love,
karen

Wednesday, February 15, 2006 11:05 PM PST

I have just one question today......When does it get better? I am running on empty right now and I don't know if I will be able to continue with school after this term. I am so sick of seizures and fighting Justin to take his meds. This week already has been difficult. Monday Justin had a total meltdown at school. In a way that is good because they got to see his meltdown, but it breaks my heart to see him like that. Today he has had 5 seizures and he has fought me all day to take his meds. He even fought Ryan and usually he does not fight him. I am alsmost ready for an alternative way to give him meds. We go see his neuro on the 22nd and we are going to have a long talk about this. I can't keep going like this.

On a good note though the other night he asked me if he could go to his grandmas house because she (this is in his words) gives him cheese, and juice, and pop, and milk, and hugs, and lets him play with her kitty. It was the cutest and sweetest thing I have ever heard. I think he like to go over there because he gets to watch unlimited cartoons too.

Well I am exhausted so I am going to get some sleep. I hope everyone is well and you are all in our prayers.

Love,
Karen

Thursday, February 9, 2006 0:51 AM CST

Where do the days go? I have been meaning to update this journal sooner just haven't had much time.

Justin has been doing okay except for the last few days. He came home from school on Tuesday because he threw up at school. when I got there he seemed to be doing better. I brought him home and fed him and not long after that he threw up and kept throwing up until about three in the afternoon. I get so tired of all the throwing up. I hate seeing him all listless and pale. He has not eaten well either in the last two days. However he wa up at 2:00 this morning and then had a seizure at 8:00 this morning. I kept him home from school. He was still low energy today too. I pray tomorrow is a better day for him I know he hates being sick. He has now gotten to the point that when he is as sick as he was yesterday he asks me to take him to the doctor. It makes me so sad. I am grateful though that he is doing better and I keep thinking of all our other caringbridge friends that are sick and in the hospital, I keep praying that they will feel better soon too.

We are going to start planning which Mariner game we want to go to this year......we have never been to a game and I want it to be a fun experience.
We were a little bummed that the Seahawks lost the SuperBowl but at least they made it there. so really they are still winners to me!

Well I am off to finish homework........

Take Care and Lots of Love to All,
Karen Justin and Ryan

Friday, January 27, 2006 1:39 AM CST

Wednesday was definitely a tough day. Today has been much better. Justin did not fight me to take his meds (thanks to his Life Skills teacher) she gave me some little trinkets to put into a goody box and when he takes his meds with out any problems he gets to pick a toy out of the box. Thursday morning I had him dressed and medicine in him in 15 minutes! I think that is a record!

I have been enjoying how cuddly he is lately and although he is very loud most of the time it doesn't bother me too much. I am just exhausted from all that has been happening in daily life.

Oh, I have decided to hang up the SuperMom cape and just be Mom. I think it is okay for me to not be perfect and to just enjoy each day as it comes. So what if I don't get straight A's in school, at least I am trying.

Ryan will be gone all weekend leaving Justin and I home alone. I am so glad though Ryan has friends he can go visit and just be a teen. I think he feels it is he has to help me all the time but I really want him to enjoy being a teen.

Thank you all for stopping by. Please sign the guestbook to let us know you were here.

Karen and Boys

Wednesday, January 25, 2006 3:38 PM CST

I don't usually write about my feelings because sometimes it is easier not to feel. I keep pushing through day-to-day and kind of laugh all the hard stuff off. Sometimes if I stop to cry I think I would never stop. I wouldn't be crying out of self pity, just because this is so hard and overwhelming on a daily basis. Some days are really great like the other night Justin got to rollerskate for the first time. Today though is one of those days where everything is difficult.
We started out our morning with Justin waking up at 5 am and driving his brother crazy from the time he woke up at 6:30 am. Then as I am getting Justin ready for school he was refusing to take his medicine. It took me 20 minutes to get him to take it. I had to drive himto school and I missed my first class today because he was being so difficult. On top of that Monday he came home throwing up and that night he had 3 seizures and one of them lasted about a minute. His are usually about 35-40 seconds. So yes his behavior has been affected from that, he has also been a lot sleepier too. I have to leave now and pick him up from school and I don't want to. I wish he could stay there until I felt able to handle his moods. I love him sooooooo much but today is a hard day.

Okay I am done feeling for right now.

Take care everyone!

Karen

Thursday, January 19, 2006 1:16 AM CST

Justin is still having seizures (3 today) and I am tired of just upping his medicine! I need to call his neuro back tomorrow and let him know that even with upping his tegretol he is still seizing.

Our nutritionist appointment went well and we will start him on a supplemental drink called Just For Kids as our last resort for weight gain.

Thursday is our appt with the genetics team for a follow up. I think we could get out of there with maybe some new information as to what to do next.

I am toooooooo tired to type anymore. I will update this weekend.

LOve,
Karen

Thursday, January 11, 2006 11:30 PM PST

I am so happy that that things are starting to slow down and not be so stressful.

Justin's neurologist ordered drug levels so that we can see if his meds are theraputic. He had a pretty decent seizure tonight at dinner. He almost slipped under the table, and he almost choked on his food. He was very postictal afterwards and that lasted for about 30-45 seconds, but was still very unable to control his silverware for about 5 minutes. I think he finally gave up trying to eat though. He had been eating very well up until that point.

Next week we meet with the nutritionist and genetics for a follow up. I wish I had better news to tell the nutritionist. Justin is still has not gained back the weight he lost recently but he is still also not very interested in eating.

Last night he curled up in my recliner with me and just let me hold him and rock him. I really treasure those moments when he wants to snuggle. My name for him has always been "snugglebug" because he used to always wantto snuggle or be next to me. He also twirls his hair when he is tired and sometimes if he is too tired to do it himself he will ask me to do it for him. I don't ever want to lose those moments with him.

Please pray for all our CB families. May they rest comfortably in the arms of the Lord as he carries them through their struggles.

With Love,
Karen, Ryan and Justin

Friday, January 6, 2006 2:30 CST

I am so glad it is Friday! Maybe now I can rest this weekend. With all of us going back to school this week and Justin had his oral surgery thursday afternoon plus an EKG and an Echo on Wednesday, I am ready for another vacation.

All went well with the surgery. He had 6 teeth in all removed. Three molars that were bad and three baby teeth that were ready to fall out anyways. Boy I sure hope he feels better after the pain from the surgery goes away. He also got another cap and a couple of fillings. They did some amazing work there. I suspect we will be up and down all night trying to keep pain under control.

I think the rest of the month should be pretty calm. We have appointments with the nutritionist and genetics this month and I think that is it. Oh how I hope it stays calm for awhile. The nutritionist won't be happy though as he is back down to 41.9 lbs. Maybe with his teeth feeling better he will start eating more. Let's pray that happens.

We are sending our love to all and pray for a wonderful New Year!

Take Care,
Karen, Ryan and Justin

Wednesday, December 28, 2005 1:37 PM CST

Merry Christmas and Happy New Year!

I guess I should really update now, I have been exhausted since we got back from Florida. I will tell you about the wish trip first as it was sooooooooo much more fun than what we are going through now.

The Nickalodeon Hotel was totally cool! Our kids suite had the Fairly Odd Parents on the walls and Justin actually slept in his own bed all week!!!!! He loved his room. I loved it because I had my own room and bed for a whole week!
We arrived on Saturday really late and so Sunday we woke up and ate and went to Disney's Magic Kingdom. We took the Ferry boat over and that was really neat to do. It started torain so we bought ponchos and toughed it out as much as we could except Justin would not wear his. He didn't care if he got wet. We were treated very well by everyone there.
On Monday we did a character breakfast at our hotel and I got pictures of Justin with Dora, Wanda and Cosmo,and Spongebob, also I took a picture of my mom and Patrick since he is her favorite. After that we went to Animal Kingdom and that was a cool park, unfortunately I woke up very nauseated that morning so we didn't do much there. Then we trooped on to Epcot and halfway through that park I got really ill and had to leave. We all went back to our room for some down time.
Tuesday we went back to the Magic Kingdom and rode tons of rides which Justin loved! Then as the park closed we went back to Epcot and shopped.
Wednesday we attempted Universal and we got to see Fear Factor live and Ryan and Justin went on the back to the futureride when Ryan came out with a Migraine. The staff at the park was sooooooo helpful ingetting us back to our car. My mom is in a wheelchair and Ryan coiuldn't push her let alone walk very far without almost throwing up and I had to push Justin in his chair. So we went back toour room and Justin and I went swimming in the awsome pools they have there. Later that night Ryan was feeling better(thank God for Imitrex sowe spent a couple of hours in the arcade.) Justin loved to play the air hockey game.
Thursday was by far the best day weather wise and we went to Sea World. I helped Justin feed the Dolphins and the Stingrays and we got to pet them too. Justin loved the ride there called the Journey to Atlantis because you go over a huge waterfall! We did that twice!! We got tons of souveniers from there as they were the best priced out of all the parks we had been to.

All in all we had a great time. Justin has been in a lot of pain since last Thursday while we were in Florida, his tooth was soooooo bad. after 4 ER trips he finally got it pulled up at Children's Hosp in Seattle on Monday. It has not been a fun Journey with this tooth saga. He has three more that need to be taken care of immediately.
We all go back to school next week and I am ready!
Ryan's MRI was normal so I don't know where to go from here. I wish I knew why he is having so many headaches and Migraines.

Thanks for reading if you got this far. Please stop in and sign the guestbook! Hope everyone is doing well.

Love, Karen and the boys

Sunday, December 11, 2005 2:16 AM CST

HAPPY HOLIDAYS!!!!!!!

Okay it is only 12:20am here so the time is wrong up above.
I just returned from shopping with my mom as the stores are a nightmare this time of year to go during the day. I really do enjoy the Christmas season though.

We are gearing up for a very hectic week. Monday night is Justin's going away party at his favorite restaurant - Denny's, Tuesday is our counseling appointment, Wednesday night we will be staying in Seattle because the boys have an early day at Children's Hospital for all their testing. Justin is having an upper GI done and pulmonary function testing, Ryan has lab work, pulmonary testing repeat test, and a MRI/MRS. Then Friday we have to take the dog to my friends house, the new kitten to my other friends and then pack to leave Saturday morning on Justin's wish trip. Wow it makes me tired just writing about it!

Justin is still fighting the sinus gunk but other wise he is doing very well! I think the biggest news is he now weighs almost 45lbs!!!!!!!!!!!!!!!!! He is so hard to put weight on. It is probably all the cheese quesadillas he is eating. His new favorite food.

We are praying everyone has a fullfilling holiday season and please remember to stop by the guestbook to say hello to Justin!

Love, Karen, Ryan and Justin

Friday, December 2, 2005 1:31 AM CST

IT'S SNOWING!!!!!

Today we have snow. It started this afternoon and the melted a little and about 8:00 tonight the roads are covered! Justin will be so surprised in the morning! It istoo cold for him to go out and play to long in but I think we will try for 15 minutes tomorrow. He has no insulation on his little body so he will just shiver if we stay out any longer than that.

On another note the constipation issues are slowly resolving and now he is fighting off a sinus infection. He has been more tired because of it. Other than that he has only had a couple of seizures inthe last week! HOORAY! Every thing is looking pretty good.

Two weeks and one day until we leave for Justin's wish trip to Florida to stay at the Nick Hotel and go to Disney World. Disney is the bonus because he really just wanted to stay at the Nick Hotel and play there but I am so grateful to Make a Wish for granting his wish.

Please keep Ann and Chad in your prayers as they lost their precious Eli last Friday to this awful disease. I don't know them personally but have enjoyed getting to know their family through their caringbridge site. Eli is truely an Angel from God.

Please sign the guestbook and let us know you were here.
We wish every one a wonderful day and we love you all.

Karen Justin and Ryan

Wednesday, November 23, 2005 7:05 PM CST

HAPPY THANKSGIVING EVERYONE!!!!!!!!!

noe that we have all the doctor appointments until December 15th out of the way I am ready to update. It has been a very busy week with both boys going in to see Dr. Saneto who is managing Justin's Mito. He is such a great doctor. Both days I left there feeling really positive and that doesn't usually happen for us.

First I will tell you about Justin. He still weighs 43lbs but he is now 3'9" What a growth! He definitely is getting taller all his size five pants are getting to short, they are still a little big in the waist though. He is still having seizures about 4 per week. He has been vomiting a lot in the last few weeks so we went to see the GI today. He is constipated pretty bad so we are doing a cleansing this weekend, YUCK! He will be in pull ups most of the time. We have to give him high doses of the glycolax for three days. Maybe then he will be more hungry too. I pray it works. Justin also got his new glasses and can see much better with these than the old ones. Now we are just waiting to do the pulmo testing in December. He is walking sooooooooooooooooooooooooooooo much better since the casting and with his AFO's. He uses his walker at school and at times his chair. Overall he is doing wonderful.

We leave on Justin's wish trip in 3 weeks from this Saturday.He is getting so excited. I think we all are though. I just hate packing, I always over pack!

Anyways I wanted to include what is going on with Ryan too. Ryan went to see Dr. Saneto because pulmo referred him after they found Ryan has mild respiratory muscle weakness and not chronic asthma. Also Ryan has been having headaches everyday for the last 3 months or so, one or two a day. He has also had two migraines in the last month and the first one made him vomit. Luckily he only got nauseated with the second and no vomit. Ryan will be going in for an MRI in December along with getting labs drawn and repeat pulmo testing. This will all happen on the same day! Poor kid! At least he won't get his braces tightened too! He would be very upset with me.

I think that is it for how we are doing. We hope and pray everyone else is enjoying the holiday season as it gets underway!

Please stop in and sign the guestbook and let Justin know you stopped by! Thank you!

Lots of Love, Karen Ryan and Justin

Wednesday, November 9, 2005 11:35 PM CST

Justin is the big 8! His birthday party was sooooo much fun! He had a rough couple of days afterwards but is fine now!

Also, the casts are off and I now have a boy who is walking on his whole foot and not just his toes! The search for shoes to go over the AFO's was an ordeal but I think we got a good pair.

Wow, not much to report today. We are all really drained and are so glad it is a three day weekend!

Take Care and please sign Justin's guestbook! He likes to see who all visits him.

Love, Karen Ryan and Justin

Saturday, November 5, 2005 11:19 PM CST

Justin will be 8 tomorrow! We have a big day planned to go to Chuck E Cheese. He has invited his whole class to come and celebrate with us!

We are leaving for his wish trip to the Nickalodeon Hotel on December 17th and return on the 23rd! We will get to visit Disneyworld too! He is so excited he wants to leave right now.

His dad is here visiting for the night so he can be at Justin's party. Right now he is asking him about a million questions! I am so glad it is not me. I have a hard time keeping up with all of his questions.

Tuesday Justin's casts come off and he will have his AFO's!! it has been a long two months!

We hope everyone is well and please sign the guestbook for Justin to see!

Thank you and God Bless, Karen and Justin

Friday, October 28, 2005 11:57 PM CDT

Okay, even though this month seemed to drag on, I can't believe it has been so long since I updated. So much has been going on and I don't know if I will remember it all.

Justin is almost ready for his AFO's. They did the cast for the mold for them last week. I thought we were going to be set back further because of the blisters. I am relieved that it won't be too much longer. Right now he has a blue one onhis right foot and a red one on his let foot. They will match his Spiderman costume for Halloween. To me I was thinking of the Dr. Suess book "One Fish Two Fish Red Fish Blue Fish" only I was saying "one foot two foot red foot blue foot". He didn't like that one. The lady who is doing the casting calls him "tootsie wootsie" and he giggles as he tells her to not call him that. I think he has a secret crush on her. He will do anything she asks. If I could only be so lucky.

We met with the volunteers from Make-A-Wish on monday of this week and Justin said he wants to go stay at the Nickalodeon Hotel in Orlando, Florida. So we will go to Disney World too. We had to pick a few dates to go so they could see what they could work out. We are hoping for December either the 17th or 27th to leave for five days. Other wise we will go in January or February. He is soooooo excited.

Justin is also getting new glasses! After the school determined he was having a hard time seeing with his old glasses, I took him to the eye doc yesterday. He has astygmatisms in both eyes. No wonder he can't see well.

Other than that this month has had one trip to the ER for vomiting and still more seizures. Luckily we have an appt with his Neuro next week!

Ryan had a horrible migraine that made him really ill. He says he has headaches once or twice aday for the last few months. He needs to get that checked out.

And last of all I am enjoying school and seem to be getting great grades. Of course I am up to the wee hours studying all the time, but I love it. I am so happy I made the choice to go back to school.

I hope everyone is doing well and please stop in and sign our guestbook!

Love, Karen Ryan and Justin aka 'tootsie wootsie'

Thursday, October 6, 2005 10:18 PM CDT

We are now on week two of serial casting and I think I want to pull all of my hair out. We discovered on Tuesday he was developing a blister on the back of his right heel. It wasn't that bad so they went ahead and put another cast on. Well by that night he was complaining that it hurt and I thought it was from the stretch so I just gave him some motrin and he still woke up every few hours in pain. On wednesday he semed to be okay going to school but by that night he was in pain again. I called and got him stronger medicine because I still thought it was from the stretch. Well by this morning I took him back up because he was screaming in pain and we found the blister got worse. now this place is 45 minutes away and going there he was screaming the whole way. Anyways they put a gel pad on the blister and recasted. We were no more than 25 minutes away and he started screaming again. We got home and I had to call back and tell them he was still in pain. We decided to give him a few hours since we had walked in the door and he had calmed down. Now this only lasted about an hour and he was back to screaming. I don't know about anyone else but driving 45 minutes with a screaming kid three times in one day is a little frazzling. They finally took the cast off until Tuesday to let the blister heal. I don't know how either of us survived the day but Please God don't do this to us again. Needless to say we are all exhausted now.

Sorry to ramble on but boy do I feel better now. Now I am off to do lots of homework and then try to get some sleep.
We pray everyone is doing well and we hope you will all stop in and sign the guestbook.

Love, Karen and Justin

Thursday, September 22, 2005 9:01 PM CDT

I hadn't realized how long it has been since I updated. Justin is totally loving 1st grade. I have noticed a big change from last year where he is more willing to participate in class activities. He has been going to school full days but starting next week we are going to cut back his days to only 5 hours possibly four. He is too wiped out by the time he gets home he will hardly eat and he is sick now too. This makes twice he has gotten sick since school started.

We got the call today that Justin will start the serial casting next Tuesday. He will also be getting his walker and stroller in the next two weeks. I already got his basket to add to the walker.

We also visited the nutritionist this week and found Justin lost a pound even on the high calorie diet. He now gets to have pediasure 3 times a day. She told us that if this strategy doesn't work in the next 3 months then we will talk about a feeding tube. I don't want thim to go through that.

Sometimes I get really sad that he has to go through all of this and wish there was something I could do to fix it. I just have to trust in God to keep him safe.

Please sign our guestbook so Justin will know who stopped by to say hello.

Take Care Everyone! Love, Karen and Justin and Ryan

Friday, September 9, 2005 7:35 PM CDT

SCHOOL STARTED THIS WEEK!!!!!!!!!!!!!!!!!
Okay it didn't go as planned the first day as Justin was there for an hour and a half when he started vomiting. It was probably a virus or something like that but it lasted all day so he didn't go to school on Thursday either. So today finally he went all day and is now crashed out on the couch! He did get up at 5 this morning so I expected this. He did say he loves school and had fun. I think he is warming up to his teacher. He didn't want to go to first grade he wanted to go back to kindergarten. I explained to him that he is growing up and when we get bigger we have to go to different grades. I am so proud of how is he is handling school. Also we haven't seen a seizure in about a week now! Yeahhhhhhhh!!!!!!!!!

Ryan started 10th grade and I will start college on the 19th. as you can see we will all be busy with homework. I can't believe it is September already! How fast the years go by!

We hope you all are doing well. We are keeping all of our Mito friends and families in our prayers.

Love you lots!
Karen and Justin

Thursday, September 1, 2005 0:47 AM CDT

I hadn't realized that we haven't updated in about two weeks! Everything has been going really well which is a wonderful blessing.

Justin is going to be getting a wish through Make A Wish. It willstill be a couple of months and he has to decide what his wish is.

School is starting next week and Justin is very excited to go back. As am I. Everything seems to be falling into place little by little. we still haven't gotten his walker or new stroller yet and I hope it comes soon. We still haven't heard about when they are doing the serial casting. I hope it is soon so he can get it over with. Hopefully it works and gives him better balance.

We hope and pray everyone else is doing well.

God bless you all.

Karen and Justin

Wednesday, August 17, 2005 3:13 PM CDT

Last weekend Justin got to go on his first camping trip! We went to Beverly Beach by Newport in Oregon. I think he most enjoyed sleeping in the tent and getting to dig in the sand on the beach. We invited Justin's dad to go with us and so we both got to enjoy the joy on Justin's face as he roasted his hotdogs over the campfire and other firsts as I mentioned above. Ryan went too and he and I got to take the dog for a walk down the beach and collect cool rocks and seashells. It really was the best time we have had in quite awhile. However the trip also included two seizures and one vomiting episode and I accidently smashed his finger in the car door, and not even that affected our weekend.

Justin is having less seizures since starting the Keppra however he is not up to full dose yet. Hopefully they will all stop by then.

He also started the extended school year program and is doing well other than being very tired by 4:00 in the afternoon. He can't wait for the real school year to start. Justin will be in first grade this year. I hope he will be able to handle a full day of school.

We hope everyone is enjoying the last of the summer and please stop by and sign the guestbook.

We love you all. God Bless.

Karen and Justin

Thursday, August 4, 2005 1:12 AM CDT

We had our regular check up with Justin's Neurologist today(Wednesday), and I don't know why I always ask questions when all the answers always make me more sad. Actually all the answers point to his having Mito.

Justin will start a new seizure med in the AM. That will make three meds trying to get the seizures under control. This is so unfair to him having to go through all the blood draws and taking so many meds, being wobbly and needing a walker. I guess in turn I realize he is so very sweet and kind, he is VERY social and is not afraid to speak his mind. He is very determined to do everything by himself or at least attempt to. In fact he is teaching himself how to play video games on the Super Nintendo at Grandma's house! He plays Golf, which he is getting very good at, and superMario, and Tetris too.

Hopefully on the 13th we will be going down to Oregon to see Ryan since we didn't get to spend his 16th birthday with him. Ryan is visiting with his dad for the summer. We really miss him alot!

I hope everyone is enjoying the sunshine while we have it!

We LOVE you all!

Thank you for stopping by to see how Justin is doing. Please sign our guestbook Justin really loves to hear who all has stopped by.

God Bless!

Wednesday, July 27, 2005 3:31 PM CDT

Hello Everyone! What beautiful weather we have been having.

Well to update since last week..... After increasing Justin's other seizure med he has had one seizure since the 18th!!!!!!! We are so happy about that. We see his neurologist next week, maybe he will have some new ideas on how to keep the seizures under control.
Today we went to see the orthodics clinic in Pyuallup to get a consult for serial casting. Looks like that is the best option so we can get some range in Justin's muscle and give him more stability walking. We won't be doing that until september, so I am sure we will be living in the pool all of August. Hopefully we have his new stroller and walker by then. He won't be able to walk or stand on them for the first 24 hrs. That should be pretty interesting since he is ALWAYS on the go. Okay maybe not physically but mentally his mind is always going, that just makes it feel like he is constantly moving.

Justin learned how to make his first balogna sandwich and was so proud of himself. His favorite food now is balogna. No more fish sticks or corndogs, just give him a few slices of balogna and he is happy. Unfortunately he doesn't eat much at a time so it is really hard to get him to eat meals. Maybe some day.

We hope all of you are having a wonderful summer and please stop in and sign his guestbook. It doesn't matter how many times you sign he likes to hear from everyone! Thank you and have a great day!

Wednesday, July 20, 2005 1:33 AM CDT

Boy I don't know where to begin as there has been so much happening. We are still trying to get the seizures under control again. Also this heat has been very hard on Justin. However he gets to spend more time in the pool when it is hot and he LOVES that. I think he may be part fish! He is very good at doing cannonballs as he is so tiny he can roll up into a ball with ease! He also lets me throw him like a ball too. He has been practicing swimming without his arm floaties but can't go distances YET! He gets about three feet and needs to come up for air but he is determined to swim without those floaties!

Also he has his evaluation for the orthodics clinic to see if he will benefit from serial casting of his feet to hopefully corrct his toe walking and increase his balance. With that and a new walker he will be much more stable and probably increase his self esteem so he won't always feel so wobbily.

We went to see a nutritionist today and she told him that he can drink chocolate milk for breakfast, lunch, and dinner! Now what kid wouldn't love that! He gets to have a high calorie diet and eat all that stuff I can't! Totally not fair! Oh well HE gets to have what he wants and that is what matters.

Please stop in and signour guest book and check back for more updates as this is for Justin and he loves to hear from everyone! Thank you for stopping by!!!!

WE LOVE YOU!!!!!!!

Saturday, July 16, 2005 1:24 AM CDT

Hello Everyone! Friday has been a very uneventful day as Justin had no seizures. I hope the sinus infection goes away soon too.

We are in the process of ordering his walker. After a week of negotiating Justin has relented and will start using a walker to give him more stability when he walks. His request is that it has to have a seat and a basket to carry his toys around. I am so proud of him for making such a big boy decision!

Justin keeps asking when he gets to go back to school, I think he wants to learn as much as he can. He is up to writing a few more words and will grab papers and copy words off of them. He loves his magnadoodle! It is easier for him to erase if he makes a mistake. He also wants to know what EVERY sign says.

We hope and pray everyone is well. Take Care.

Thursday, July 14, 2005 2:40 AM CDT

Today has been very concerning as Justin is still having more seizures (3 today!) So tomorrow I will call his doctor to see if they can do anything else to help them besides more meds increases. He also has another sinus infection.

Today we also went to see The Fantastic 4 at the theater. It was so fun getting to do that with him. He loves superheroes so it almost held his attention the whole time.

As you can tell I figured out how to add photos to the webpage. I am sooooo excited about this! I thought I was never going to figure it out!

We will try to update as the days go on. Thank you for visiting!

Tuesday, July 12, 2005 4:24 PM CDT

Hi Everyone! The last few weeks have been very busy for us. We went to see the genetics doctor and also on the fourth of July we got to watch lots of cool fireworks. This last weekend we went to a mito family picnic and got a picture taken with my doctor and other kids that have mito. There was a water balloon toss and Justin got soaked! We had sooooo much fun!

The last month Justin has had more seizures than normal but hopefully the new dose in medication will help. Other than our night in the hospital on the 2nd everything seems to be going okay.

I hope you all like the graphics on Justin's page. Melissa put them on for us as our computer doesn't want to work right to add them ourselves. That is why we have no pictures yet, but keep watching as they will soon be here.

Have a wonderful summer and enjoy each day!!!!!!

Thursday, April 7, 2005 1:05 AM CDT

Image hosted by TinyPic.com
This is our first entry so here is a little of Justin's history.
Justin was born on November 6th, 1997 he weighed 8lb10oz and 19 3/4inches long. He was born with the cord around his neck and although without air for a few minutes he seemed to grow just fine. When Justin was 2 he had his first hospital stay with something they called Ketotic Hypoglycemia. We battled with that for a few years and when he was 5 he started having seizures. Justin was diagnosed with a mitochondrial cytopathy in April 2005.
Today his symptoms are seizures, ataxia, migraines with vomiting, reflux, and behaviorial issues.
Justin is a very happy boy who loves his brother Ryan, playing with Transformers, and his dog Sparky.

Click here to go back to the main page.

----End of History----