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Saturday, January 4, 2014 7:51 AM CST

Trying very hard to figure out whats right and wrong.
Trying to sell a house and move so everyone can get on with their lives. Waiting for shoes to drop because of choices and medical issues.
Trying to feel some security in an unsure world...
All the while keeping my faith that it will be ok. Or trying.
Th e most painful part of the journey is losing part of yourself and not knowing how to feel....
Hoping and praying that things can turn around and joy...not happiness, but joy...can return.

Sunday, September 15, 2013 2:10 PM CDT

This week is important to me. Its " mitochondrial disease awareness week"
It may not personally affect you, but it does me...my family...and many of my closest friends.
Ive spoken with a few today, just seeing how we are all doing this year, and to just celebrate another year notched in our belts. One thing we all commented on is, instead of others wishing we would "get better", it would be great if one day they would realize we are not getting "better"... Instead encourange us, and celebrate with us when we manage to get back to a good "baseline"...
Sometimes its not better, sometimes it is...most often times, it is simply "stable".

So thats what im hoping for...a period of stability for myself and my mito family.

Praying for a cure, but hoping for stability again.

Wednesday, May 29, 2013 10:26 AM CDT

Well...i know
I do...
Tis has become a part of my history and yet its becoming my current again...
Seems all my neuro symptoms from march 2006 are back...with a vengence and have me freaked. Surgery thew me into this...
Ugh...
I read the journal history and it made me nervous...
So if ive been super quiet its because life just doesnt stop hitting....it just pounds me every now and then.

Sunday, December 30, 2012 11:29 PM CST

I am sure no one reads this anymore, but I just feel the need to update anyway. Most of my updates happen by text now, or on face book.
I used to enjoy sharing my heart on the caringbridge, but it got to the point where it hurting to read it, and people were losing any interest in hearing it.
We are in a bad place with tim once again.
He has a blood clot in his heart. This clot is either in the vena cava or the aorta. The test that will be done this week will give us the exact location.
Meanwhile like I said its all on facebook and most everyone is updated at this point.
So many things are just going wrong in so many health avenues. the only healthy one is josh...with reilly close behind. The rest....well just so many things.
My head is no longer able to wrap around how life can just keep going crazy.
The one thing that was supposed to be in place, and keep things from being stressful has even become stressful
at some point life just has to stop and let us all just exist. Tim had the right idea of ignoring it all...then look what happened. ugh
please just keep thinking of us. Health wise it is a very bad situation.

Tuesday, October 2, 2012 3:42 PM CDT

well another very long time has passed....
sorry
most of my stuff is on facebook now but not sure who reads or doesnt anymore...
biggest thing going on is that kris is medically very unstable and we are looking at a very intense surgery for him....
keep him in prayers.
tim is pretty sick too.
Lianna is also having major mito issues....I dont want too much online so if anyone wants to know details just ask me.
been really rough lately medically..
I am not gonna share details now that they are older. so feel free to ask.
beyond that, we are muddling through...

Sunday, November 20, 2011 2:42 PM CST

its been another fun month in the household.
not
We have had some very sad and emotional things take place.
We lost my uncle after open heart surgery, and that hit me extremely hard. I was his favorite niece, of course I was his only niece. It was hard because I was driving hours each way to see him while he was so sick, and it was tough on me emotionally. Of course, me being who everyone thinks I am, kept it inside. I cant just ever just let go emotionally....its not really allowed.
then after they buried my uncle, my brother paul was found dead after being alone for a few days. He had a massive heart attack. it was a split second and he was gone. I talked to him hours before it happened and it kills me inside knowing that now uncle buddy wont be making me mad, or my kids upset, or eating all the food at holiday meals...he wont be laughing as we just dump all the left overs in his direction to "clean up". He loved my dog, and was begging me to bring him to him this holiday season...he wanted to hold him and play with him because he reminded him of his favorite pet. yes, he does look like him identically. Its just hard. Hard because all I have ever done is try to keep everyone together. try to keep unity and people talking. I can see my dad was the glue that kept everyone a unit. He left, and everything fell apart.
I am just the daughter, the only girl in a house full of boys....its always been told to me to get over that fact. My brother was truly the lucky one because he had grandparents who loved him unconditionally. I never had the same ones because I was the last child and they were gone before my memories even were made beyond a few little things. I was the first granddaughter...I never even realized that. there were 8 grandsons, then me...then my cousin heather, then my lil cousin matt...so my dads parents never really knew us very well. But paul had them his whole life...lucky!
so in the middle of all this Lianna was diagnosed with TMJ. She also has something definitely going on GI wise, that will force us to investigate further. not happy about that. She is just not feeling 100 percent when she eats, and is eating less.
Kris is sufferring. He cannot get any relief from pain due to his bleeding and GI problems. His arthritis is totally out of control and what used to work is no longer helping him anymore. He simply aches all over. no way to live...but what more can we do. Its killing him to do anything.
After all of that, we are supposed to be celebrating birthdays this month...3 to be exact. Timmy turned 20 on the 19th, and that alone is a miracle...he has cheated death toooooo many times, he is strong. he is very strong. He has a will to live and obviously has a purpose....
Reilly turns 10 tomorrow. He should not even be here. He came into the world cheating death. he had no nourishment...the placenta failed weeks before and he was called a thanksgiving miracle. He certainly is a tiny child still, but he is growing and very happy.
I have a birthday coming up. I am not as happy as the rest of them about it. once again everything surrounding thanksgiving is really stressful and sad. I can only be happy that my family will celebrate the day with love.
we will be missing a few people, a few phone calls wont be made, but I hope that in heaven a celebration between my dad, aunt, uncle, grandparents and brother, is taking place. I hope that my friend rex whom I love and miss too, will be joining in....I wish there was a window in heaven I could look into and just know that everyone is together and happy. I wish I could peak for a minute to feel comfort...

Sunday, October 2, 2011 8:27 AM CDT

A couple things ... Kris has a birthday! He is 22. Happy birthday to a kid drs didnt believe would live to see his first birthday.

Also i did the 5 k. My body is done! I ache beyond ache and am still having lactic acid issues. However it ws the MOST rewarding thing i have ever done and that makes me happy.
Mito cannot dictate how i live. Now if i can just feel that everyday.
I will update again soon.
Happy birthday kris.

Friday, September 30, 2011 8:20 AM CDT

This will be short.
I have not said anything to many people but tomorrow I'm doing a 5k. I'm doing it for me, my friend bonnie, my friends Heidi and my princess angel heather. Most importantly for my kids. NOTHING can cure mito but mito does not need to dictate what we CAN do!
Truthfully my body is exhausted. I'm struggling to stay out of bed every day. I've upped my medications to help w pain and I'm having migraines everyday. My blood sugars are out of whack and so much depression is in me that I want to give up everything and hide away. But that's telling mito and my body that they won this battle and I can't do that. I NEED to do this 5k for many reasons. I have bonnie by my side w each step I will take. I am taking these steps in her place. I have my kids eyes burned in my head. I have heathers smile and the vision of her last days in my memory along w Timmy on a ventilator. I have heidi's grit and determination in my heart. How can I give up?
I cannot guarantee I will do well or even finish, but I need to do this. I worked hard maybe not hard enough.
I cannot let this stupid ridiculous disease take one more thing away from me or anyone else.

Monday, July 11, 2011 8:02 PM CDT

I said I was going to update this more often but truth be told I have had no desire to even attempt it.
I am having a very tough time lately, and I dont want to go into details right now, but I am really having a very tough time.
I figured maybe if I got back into doing what I used to do and worked hard to try to do that, that maybe things inside me would improve...not.
but I still try.
I feel like all I do is write the things that are wrong with everyone all the time instead of saying what is right with them...so I am going to try that this time.
Despite the illness that has plagued them, their has been good stuff too.
Tim graduated from high school but will remain in the brain injury program till 22. But he graduated!
Kris has decided he needs to try to get out from the family house and do things on his own, and we are trying to be supportive to that, because we all know he needs to do that for himself. Josh has graduated from one school, and is into his second year at bridgewater state college. He has a good job at the church, and loves his "kids" there.
Lianna has finished 8th grade and is going to start right up again immediately to get a head start on 9th.
Reilly has finally begun to read! not a ton, not easy, but enough to finally make a dent in things he wants to do. He will be entering the 3rd grade soon too.
Me, I graduated from my school and the school wants me to go back for the next level but I just cant. there are things I would love to do but they are not possible right now.
Rod has been working hard and traveling for work, enjoying it.
It seems we have a lot to be thankful for, and hopefully someday I will feel more like the old me to really enjoy it and feel it again.
meanwhile, I can promise I will update more often, but I am not sure I want to make that promise, because I dont think I can keep it....

Saturday, May 28, 2011 8:44 PM CDT

It goes without saying I know... I keep not updating...sorry
Life has been so insane. I cannot even begin to explain it in detail but suffice to say it has been difficult.
O ya, the blessings in the middle of it all have been wonderful and plenty so dont think it has been all discouraging, it just has been difficult.
Reilly has been sick since january, with very little break of healthy moments. Its scary because of his age. This is when we began noticing little things in tim, so I am on edge....but he seems to be holding his own without too many interventions beyond non stop antibiotics, Dr visits, and lab tests. Those are enough!
With gas prices up and parking costs up, it has been a challenge to survive. PLUS he is struggling with learning issues that we have been doing ok with so far but its starting to wear him down too.
Lianna is doing wonderful. she has her pain under control with her meds, and rashes seems to come and go, but nothing major so far...been able to keep it semi controlled somehow lol.
She starts high school in a few weeks, yikes.
Tim is graduating! weird how 2 years ago I just wanted to hear his voice again and now not only can I hear it but he is graduating. Ok, so its not harvard, but he has a remarkable teacher who has given him all the tools he needs to make choices, and to make sure he doesnt get taken advantage of. He took part in the special olympics again and won 3 gold medals. I am proud of his accomplishment. Rod is doing so good a job with him!
medically he is losing a lot of weight again, and yes this probably is that mito rollercoaster he seems to be on, but nothing we can honestly do about it.
Kris REALLY needs to find a job, school or something...he is bored out of his tree and medically he just cant get stable enough to be consistent in any job or schooling. It really is hard to tell him to get a job or go to school when he ends up sick for days on end. People are not very forgiving of that in the real world....so its tough
Josh....I am proud of that man. He has turned out wonderful and has done what every parent hopes for. He has a good job, a ministry with kids and is secure. Healthwise he just has to moderate his activities and he does well.
I have been doing fairly well. Have had some recent flare up of pancreatitis, but not super bad this time. Probably because I was dieting by eating all fresh food as much as possible, ok I really mean all salads, but fresh food sounds so much better....but I went back to eating one meal a day and its not fresh foods, so my tummy is revolting. it will settle down soon...it generally does. In the meantime I managed to get my CPR certification done, EMT schooling done, and I am certified with the state, and nationally with NREMT, plus I have EVOC and ECOC certification as well for the state. I did an accellerated course to do that stuff and so glad to have finished with a high GPA. Now the job is another thing...none out there right now. I am looking, I cannot do full time at all, but something part time or per diem is nice.
So have you ever felt like you finally reached a good place? every single time I feel like I have finally gotten to a place I can catch my breath and smile...something just takes it away. I have been happy and at peace. I feel alive in many ways. All it takes is a phone call or comment and BANG, gone...
All I ever wanted to be was a mom. I wanted to raise kids that were secure in their knowledge of who they are and what they are. I wanted them to know hard work provides them with needs being met. I wanted them to learn about the world around them and embrace life....I feel like I have taught them how to navigate an emergency room, antibiotics and most medical equiptment. I feel like they dont know how to just accept a simple day anymore. The middle 2 dont look at the younger 2 and realize they just want to be kids, instead its older kids vs younger, and not in a way that is fair. I want the younger ones to have what the older ones had, and I dont know how to make it happen...each time I see them happy and loving life, I think we got it!!!, then bang its gone....I just want them to be happy and well adjusted, knowing who they are inside and how to be strong in that. I dont want them to be me...I dont want them seeking approval for each little step. I dont want them unsure of who they are or what they can be. WE are not mito...WE are not medical moments...we are people, we are love, we are real....we can be whatever we want to be and whatever God wants us to become....
THAT is what my goal is for my kids....
ok, I know...I am in a venting mood yet again. I feel like I cannot try anymore, I have tried my best and most likely have failed at that, but I will keep trying until I have nothing left in me. I made a promise to be my best and do my best....I am trying to keep that promise! ugh...but somedays....it doesnt seem to work out too well.

Tuesday, March 22, 2011 4:29 PM CDT

Im going to try and update from my phone....notice the verb...try.
A lot is going on.
Reilly has had an ongoing infection since he left Mass. and i think after this last round of major meds, ee finally may have it gone! He has to go back to mass to see our dr in boston so we will have him evaluate him there. So far he has developed sensural neural hearing loss at about 30n the left ear...right is fine...so far.
Lianna is great. She loves it here, has friends and will soon begin to volunteer at a place for wish kids and families that is close to our hearts.
Tim had an iep meeting and will b in the same school program next year. Full day, 5 days. That helps. Hoping for the adult foster care stipend so we can get an extra hand or two....
Kris is having another crohns flair up. He is trying job fairs looking for work.
Josh just turned 24 and will always b my baby! Sorry josh....
He is at bridgewater state college doing well and working with the youth at church full time.
Im in school for 2.5 more weeks. Passed my first half of state exam and need one more practical half then one final written exam....i luv it and glad ive done it. Its been tough doing it with clinical times too bcuz of being me with the kids...but we have suckex it up,# added the help of my bestest friend and am doing it.
I was asked today to post the trust fund acct number on here. Im not sure if i can do that....if i can i will...it is still open, albeit near empty. I will let u know if i can.
Well im hoping my phone doesnt fail me when i hit send....
Update more later

Wednesday, February 16, 2011 12:27 PM CST

Ok, I am just going to say this and get it over with. I am really hating so many things right now and my attitude which is normally upbeat is now frustrated and angry....
I have shingles. I hurt...I am so upset right now because I am struggling to do so much and I am getting knocked down. I wanted so badly to go to school, and get things settled in a better condition for my family. I am desperately in need to find a way to help them and school and getting a job is the only way I can do that...I cant go back until I am over this rash. I am sick over it all...to add to all of that, I have reilly here who has never had a varicella shot or has not had the pox at all. He cannot handle the vaccine due to his immunity. Now he has been exposed to the pox. If he gets sick and something happens to him I will never forgive myself. Dr said it is brought on by extreme stress either physical or emotional. Well I would agree I am under stress. I just want things to stop! I want things to be normal and not worry about stupid things like living.
I realize I do not deserve anything in this life, but I am just so angry that every time I turn around over the last 10 years, medical reasons have caused heartache. at some point in time I hope life just stops being crappy...
I am tired, I am wiped out, and I am beside myself upset over this...




Sunday, February 13, 2011 8:37 AM CST

Wow...lots of info to add now...

mid january the kids came back home with Rod and reilly was sick when he was in Mass. By the time he got here he was real sick with fevers and pain. I waited to see if the trip had maybe been the cause of the increase of pain and fever but after 2 days it was apparent it was not. SO I took him to the Dr. Yup he had one 2 bad ears, sinus infection and the start of bronchitis. After 10 days on medications, he looked like he was definitely ver the sinus stuff and the cough but he still complained about ears....then it happened....he blew his ear drum! soooooo, off we went to a new Dr who sent us to the ENT. They had to suction out his ear after they poked a hole in it....we did hearing tests, and found that not only does he have an infection but reilly has sensoralneuro hearing loss like Tim does. His Audio Acoustic Emissions test was bad. His overall hearing was affected too. one ear worse than the other....so on a new antibiotic and now special antibiotic drops...if this didnt go away we were in for tubes AGAIN...so......we go out 8 days, and he is acting all weird again and saying it hurts to swallow....lymph nodes swollen AGAIN...and take him back to the ENT AGAIN....yup, BOTH ears have fluid AGAIN, and both look infected but not as bad as before....on ANOTHER antibiotic!!!! ok...I am so sick of Drs! lol...He cannot catch a break. he hurts because now the lactic acids are building up and he cannot do the things he wants to do. He is not even close to playing or interacting at baseline yet. Hoping that once the meds are out of his system he will be back to his old self...
we go back in 3 weeks to see about tubes...hoping not.
Lianna is doing well...just fighting a cold.
I am in ....drum roll!....School!
I began school Feb 1st and so far I am doing well. I did very well in my A/P class. I am in an accellerated EMT/Medic program. Kids are handling it well so far. I am gone 3 mornings a week, and trying to find computer time to make up the 8 hours of mandatory time there. I also have to case studies and in a week begin clinicals. I will be doing this for 10 weeks, then hopefully be able to do something to help support us. My body is crashing under the pace, but I have to just hold out a few more weeks. I can feel exhaustion setting in, my energy level is crashing slowly, but I just have to do this...so pray I can hold my body in chk a few more weeks...its amazing to me actually that a few year ago I was totally in a wheelchair after a stroke and feeling like I would never do anything ever again and now I am in school and making my body do things it never thought I could do. I have come far...I just want to finish the race.
Josh is doing very well. Working and in school full time.
Kris is kris. He is managing to keep the crohns in ck. He has had to be hospitalized with it but he seems to get back on his feet better these days tho. He is now with adult Drs not peds. Hoping they manage him as well.
Tim is still in school 4 days a week for 4 hours a day. He really needs more help. He needs someone who can mentor him and guide him to work skills. He would LOVE to be in culinary. He wants more than anything to work at disney "giving food out"...guess that means handing trays! but I have no clue. He wants to work and have a job. He wants to be in florida. He needs LOTS of help before any of that. Hoping that his life can be what he wants someday. He just needs lots of help. Still cannot have us all in one place yet. We keep trying but it is too much on the younger ones and they dont deserve any of it.
The past month has been trying...with reillys ears, and then we had an unexpected death in the family. My aunt ruth died. I really liked her a LOT. She was probably my favorite aunt. She was fun and funny. SO off we went to lake city florida and handled that. It was sad. I love my uncle too...he looked worn out. I hope he manages to get backon his feet. It was nice to see cousins I hadnt seen in YEARS. But wish I could see them more often.
I had a lot of appts in boston when I was there, and I have to go back to a few Drs for more in depth tests and visits. I am hoping to do some of them locally and not have to travel so much. first and foremost I need to go to endocrine...my body is messed up! I have poor cortisol levels and need to address that. gee maybe that would help me through school!
ok, I am thinking I am done with latest news...
I havent heard any more news on christina and will update when I can get more. Meanwhile keep praying for her...
I will upadate I promise...

Saturday, January 1, 2011 5:52 AM CST

here is a 2011 miracle....I actually updated 2x with in a month!
ok, I guess I cant be funny so early in the morning.
Well, I promised an update but I do want to share some things too.
My update on MRI and Dr visits.
Seems my amino acids are off, as in way off. Yet my nutritional studies are fine. So its not eating related. My thyroid tests seem to be ok, not great but doable.
My pancreatic enzymes enjoy the roller coaster ride they have been on and continue to be on. So in fact I do have a recurring pancreatitis, but evidently that is not my problem with my pain....here are the results from the MRI...I have cysts in my liver, so when the liver is being called on to produce bile, the bile is going around the cysts causing pain in the obstruction of the bile...so she looked at me and said basically I traded gallstones for obstruction in the liver. There is nothing they can do because they are not big enough, but they are going to be watched because they can get bigger and cause lots of trouble. SO that explains why my liver tests go off at times. Also, my intestines dont work right and they are spasming. that is most of my pain I guess. I am on an antispamotic medication and I have taken in religously when I am south but not so much here in mass, so I am going back on it because what I thought was stress pain up here, is actually real pain and when I take my meds I feel lots better....go figure huh?! oops...my bad. In my defense tho, the reason why I dont take them here is my leg pains dont respond to it very much so I hate pills and decided to not bother, and instead took my muscle relaxing meds which help me all the way around. I cannot take them both so I chose one...and the one I chose makes me relaxed. however if I do them both at any time during the day, I end up a zombie, and I hate that feeling. so thats my excuse.
My cardiac functions need to be addressed, and my autonomic symptoms as well. beyond that I am great. to be honest I feel SOOOO much better south. my body doesnt even hurt like it does here. The Dr agreed it was the best choice for all of us. Now if we can just get tim to fix some things, we could make this work.
Kids final apts went well. The Drs all agree that reilly has made such tremendous progress the past 6 months. He has muscles in his legs! he still has weakness in his ankles but he lived in sandals and they had no support. He is in sneakers now so maybe that will improve some...either that or we were told AFOs to keep them equal with his legs. beyond that he looks good medically. LD wise...well, he has very specific asperger issues still, but they are workable. when he zones out tho, it is very hard to get him to track back. but if I can keep things moving along, he is wonderful. He cannot read a book yet, but he knows certain words. Approaching it much differently and seeing steady learning, just not fast.
he wants very badly to do dance. We just do not have it to pay for that at this time, although it would satisfy the PT part the Dr wanted on his ankles, but I dont think insurance would allow a dance school to be considered PT...so I will just turn on the radio.
Liannas skin is really difficult to keep in ck. but we are working hard on it. she has been sick past 2 weeks with congestion and coughing. Had the flu, and still trying to get over all the lasting effects.
I think tim is getting this flu bug everyone else has had. He is coughing, and sounding like it may kick him, but we are waiting to see how it turns out.

So in 2010, it definitely was a year of change.
I have many wonderful parts of the year and some really difficult parts as well.
As a family we have been torn apart to live in 2 opposite ends of the country. We have made it work, but only because we have a tremendous support system in place both down south and for rod here up north. Alot of family is supportive and understands the facts, then we have a few that are so ignorant and I dont even know another word to use, but just rude...they I guess just refuse to see truth, and continue to be a sore spot in our life. If I believed for one minute my kids were suffering through this, I would reverse course and do something different. We have been through all our options and there is no different. Phone calls and letters to state services keep saying the same thing...you make too much, he isnt retarded enough, he isnt sick enough, he is too delayed for us, he has too many medical issues for us, and so on...so we get that game...the best answer was "blame the economy and our govenor because there is nothing out there anymore" ...ok I will do that.
But honestly when we are south we are happy and safe. When we are here we are on egg shells but we have our things so it makes us happy for a short time. Yes it is hard to do this. Hard on both sides. But we have so much love and people who love us, thats what makes it work.
God has been good to us. We have a warmth, food, our clothing, and our needs met. easy? nope, but met.
So we have goals for 2011. They are to try and get kids to be able to be in one place without problems. We are going to struggle with that one, but the kids need to do this.
lots of transitions need to be made this year. Praying for the right timimng and the perfect transition for all of us.
establishing life all over again.
The biggest goal is to keep our faith in tact. It has been hard. Wanting to give up or walk away has been a much easier solution, but not one that sits well in your heart and mind. So hoping and praying that will remain a priority.
Trying very hard to start school this month. I need this. pieces of the puzzle are getting into place, so its now just the logistics. pray pray pray. It would make our lives so much easier if I could.
And I want to end on a very different note...
Please pray for my little friend christina. I just love her and am so grateful for her coming into my life. She is only barely 9, and has been through so much. Now she is looking at a cancer diagnosis. On top of her mito. My heart is breaking over this. I cannot even tell you how badly. But please, if you have to choose what to pray for, then choose her. We will make it through our junk, but she needs lots of prayers.
I am praying 2011 brings peace and resolutions. I am praying it brings healing on every level, and I am praying for change.
thanks for listening...thanks for reading and traveling our journey with us. I am sure the past year has been very hard with all the unknowns, but thank you for being patient....

Tuesday, December 21, 2010 7:14 AM CST

I honestly dont even know where to start.
I guess I am just really tired of having to explain myself or everything to everyone and hope that it satisfies them. I honestly cannot explain anymore. I have done my best and Rod has too...Sea le Que sea....it is what it is.
We have been back in Massachusetts for a month. It has been the most difficult time we have had as a family. Stacked Dr appts and transitions, behaviors and tears. It has just been difficult. I guess the hardest part is having this beautifully large place, and knowing that it is comfortable and perfect in the structural sense, but realizing that I can no longer have it because of lifes twists and turns. The younger kids lose out on having something that was painstakingly planned out for them. It just makes me hate life and get so angry. Ooooo, yup I said hate life. Life threw us a curve ball and I have not handled it well. I admit it. I am not perfect. So now I have to reasses things in life and see how I can make it work without chucking it all up in the air and saying whatever...
We had so many apts over the past week. The Dr who told us to try south saw us and was SHOCKED. she said Lianna should bottle the south air and sell it because she has done so well with her rashes from psoriasis. When she is south they are non existent, here they r raging. So far she has kept it minor this time but we are on it like white on rice!! She is itchy and cranky but its not broken open and oozing yet. She looks good and he body has not progressed any further. Her migraines are getting worse but it has been discussed and assumed that is from hormones. so we will watch them more and see what to do.
Reilly on the other hand has improved vastly from what he was however he remains having major issues. I was given a Drs name and need to bring him to see this man when I get back south. He will be getting IVIG there, and we are looking into why he runs fevers of 103-105 off and on. Its looking like something either autonomic is raging, or he has juv. Rheum. arthritis, or maybe even uncontrolled metabolic issues. at any rate this needs to be figured out so we can improve this. BUT he has begun to build muscle which he never had done before. So the excercise has been great for him. She was shocked to see a video that I had of him hoola hooping and jump roping. THIS is the boy who can function in the south! no real pain. Since they have both been here they can move but they are slow and they hurt...I have been in horrible pain in my legs. I feel like I am walking on shards of glass in my feet, and my legs feel like charley horse pains most nights. Headaches have not been worse but there...
My Dr said my gastric emptying study that was done before is pathetic....those were her words...ooops o well. I have to have a MRI of my abdomen because my LFTs are still elevated and my pancreatic enzymes are still off. Its being questioned if my billiary tract is working right. Or if I just have chronic disease that is just mild....I will find out this coming week. I am officially down 45 pounds on my scale, and feel better becuz of that.
Someone asked me what I wish for...I wish I could take this home and ship it south. I wish my kids didnt have to lose out in order to be happy and healthier. I wish I could merge families and never be without either one of them...I wish I could have the relationships I have, yet go back years and change the direction of medical that it has taken....I wish for so much, but in reality it is what it is and I have to be happy. And I am...most days....I am happy I have a little place I can call a home for me and the kids. Its far from perfect but its our for now. safe? sure..I am as safe as I can be. Healthy, well, I can be sure that we are doing our best and it has been positive for the kids health. They are looking so much better there. They laugh and play and their school work has improved. They have family there and cousins. They are with them a lot of the time.
Even tho they seem to have lost so much, we have been able to experience more life altering moments. its been sweet at times but hard at others. So may wishes this holiday season, but so many blessings.
I am still trying to get financial aid so I can go back to school. not so easy but working on it.
But in all of this, I remember that I was not promised an easy road or one of glitter and gold...I was promised my needs would be met and for the most part they are...we are warm and dry, and we are not hungry. Sadness is not something we are told we wont have, because joy comes through mourning....I guess we have to finsh that phase right now...because I do have joy and it generally comes when I least expect it. All in all it is a blessing to see the younger kids thrive like they have, and know they are safe, happy and learning lots....that is far more important to me right now than anything else. who knows maybe somehow I can wish the house would walk south and it will...ok, I never said I could not dream! its just a wish!
So in typical me fashion I am ready to celebrate the season. I love this time of year. I wish the snow had not hit like it did but its pretty. I am excited to see faces on christmas morning, and know my kids are together in one place and hoping it is positive. I love this time of the year, the lights, glitter, music and joy....been a long season but the reason for it is what gives me my joy....
enjoy christmas!!!
I will update after the MRi and other appts...

Saturday, November 20, 2010 6:59 AM CST

Sorry, been having a tough time of it lately...have been a little bit sick, and kids have decided to go crazy on me.
I thought I should start by saying yesterday Tim celebrated his 19th birthday. Miracle actually. No one expected him to make it past his 17th to his 18th..now look. He is doing well in his special school program and is learning culinary arts. Things still have no improved enough to all be together, the younger ones are frustrated by it but are much better and they are doing very well.
So Happy 19th birthday Timmy!!!

Tomorrow is Reilly's 9th birthday. If it wasnt for Reilly we never would have known how to treat tim when he got so sick. Reilly was the child who tested positive and gave us the name for our journey. Without that we would have been lost.
Reilly is all excited about spending his birthday with ALL his friends...and he has LOTS.

We will all be together for the holidays starting tuesday, so please say a prayer that safety is found, and that happiness is achieved.
I am very torn, lots of reasons why, but torn.

well I am off to go start my coughing fit again...sneezing too...just love this stuff! I am on Avalox for what I think is my asthmatic bronchitis again...but being out until the wee hours in the chilly night air with the kids has given me a bit of cold I think...o how joyous.
I will update as we have some pretty major appointments coming up soon.

Sunday, October 3, 2010 5:55 AM CDT

I just wanted to update and let you know that Kris is in the hospital and will be for a while. He is really sick with strep plus it has caused his bleeding to increase and his pain is intense. Will be getting other labs to rule out other problems as well. He is on IV steroids and meds for now.
Not a way to spend your 21st birthday!!! But he is in the best place he could be in during this time.
He could definitely use encouragement and prayers....this will be a long road for him.
Will update as info comes in.





Friday, October 1, 2010 7:41 AM CDT


HAPPY BIRTHDAY KRIS!!!!!!!!!!!!!!!!!!

he is 21 today. This is the boy that they said would never live to be 1. He did....and now he has outlived their expectations by a lot more!
Happy Birthday Krispy.

He doesnt like all mushy gushy stuff so I will just let it be. But 21 years with kris ahs been interesting to say the least. I cant say I have had a boring life with him..he has kept us on our toes...He was a dare devil and risk taker. He never complained of pain and if he did it was intense pain. He always figured ways out. He never was kept down for long. His teachers in school loved his personality his Drs loved the fact he never gave up a fight. Kris has always been himself..never a carbon copy of anyone. He is unique and fun most days. Eccentric doesnt even begin to fit as a description...
Happy birthday kris...sorry you are so sick today and hurt so much...you will enjoy your day I promise..maybe just a few days late. Dont forget who you are inside and where you came from. You will be ok. You will achieve so much if you just stay focused on your goals and never lose sight of them.
I love you.

Saturday, August 28, 2010 7:44 AM CDT

Just wanted to say Happy Birthday to Timmy, his "1st".
One year ago today he was removed from life support and took his first unassisted breath. pretty amazing feat, and even tho everything is not going as we had hoped or as we had in our minds for plans, we still celebrate the fact he beat amazing odds of a 2 percent survival rate, and is here today...
so HAPPY BIRTHDAY TIM!

Thursday, August 19, 2010 9:24 PM CDT

Kris made it through his procedure and now we wait for biopsies. It still isnt normal but it is not horrible so we need to know what it is the next step is.
Tim has been started on some new meds. I am seriously praying this med works. We all need the meds to work!!!
He is getting so much worse trying to live with him. We have a couple things that we need to look into, and hope that something will give.
Lianna had herself a lil asthma attack this week, but it was simple to address and she is back to being fine. Reilly is sick with a cold.
Rod is still up and down medically as well.
I am on the new meds that the dr insisted I use. I do not like them, I also have had atrocious migraines most days. I am having periodic numbness and SLE moments. but with the meds IF I take them, I feel better. I just get zonked by them. I just have things I want to do..I have goals.
I went and took an entrance exam for school. To see if I could go back. I also talked to a carreer counselor and got a bunch of help trying to see what I could do with my life at this point. It was a nice opportunity to talk out my hopes and dreams and especially where I feel led. I checked out the 3 programs that were suggested, I love each one, but need to pick the best one, then I need to fill out Financial aid forms. I could do one entire course now for 350.00 but that leads me to the next big thing... I just had to put out 1100.00 on the van. It took 3 weeks to do it, but over 3 weeks so far the work on it has killed me...it still needs new brakes and the estimate was 400.00. So, I am very frustrated by that.
pretty much that is all that is going on lately...I will update with news once the biopsies come in.

Tuesday, August 10, 2010 8:42 AM CDT

I just want to do a quick update.
In a few days Kris goes in for a major test for him, and we will have an idea what the future holds for him.
Today I am supposed to call Tims Dr for test results and I am not looking forward to them.
My medicine does work, when I take it. I went off it because it was wiping me out, but realized just how many symptoms I WAS having!!! so back on it and it does improve how I feel.
Reilly has been much better once he got away from tim again. He is back to sleeping in his bed, and eating better again. I never realized how truly bad it was until we tried to make it work.
Liannas really bad rash is back under control again...Dr was right!
And lastly, I have made the decision to go back to school. I am needing to do somethng with my life so I can help the family.
In the meantime the tires I had to get for my car were not done right! so Sears tried to jerk me around, but I got on the phone with 2 mgrs. One in Mass and One in florida. funny how it finally worked out!!! I have to go this week to get it fixed right. Meanwhile, I had to have another 300 worth of work done on the van to bring it up to the mileage check. I had a quote of 599.00 but I went to another place and they did a diagnostic and it was only 300. So I am being frugal as can be!! but safe :)
Josh is doing wonderful!!
ROd is still having some trouble and will be having his apointment soon to get his results of testing. We are confident that it will yield help.

So prayer requests...
Tims results will help us...
would love for complete healing of his brain.
Kris's results will give defininte answers and we will know what direction to look in.
Rods results will give answers and help.
Lianna and Reilly will continue to thrive and do well.
I will find the funding to finish a certification.

Praise
We are safe
we made it to tims 1 yr anniversary of being alive...august 28th is his "birthday", the day he came off life support.
we have people who love and support us through all the insanity of life.


See I may not be great, but I am updating a lil more frequently!



Thursday, July 29, 2010 8:22 PM CDT


Ok, I know...weird....2 updates so soon!
I wanted to fill you in on appointments this week. But also wanted to say that my PC is missing letters as I type. I think it needs a fix, but I cannot do that just now.
Anyway, Lianna saw her Drs, and is doing well, her rash looks horrid again and she is hurting. She needs to adjust her medications a bit but otherwise keep doing what we have been doing.
Tim saw his Drs, not great news. He had a nasty infection that finally has begun to get under control. He had to do antibiotics.
He had held it together pretty well until just recently, and we are getting out of here as soon as we can. I think its the reason for my migraines past couple days. One of the Drs is concerned about some of his labs he had done recently and we sent a whole new set off. Incuding a intercochlear antibody test to see if that could be the cause of his hearing loss. It causes sensural neural hearing loss...we shall see. My all time favorite Dr Webster has offered to look into some things for us, but as he said not much can be done at this age...but he refuses to let us hurt...so keep praying.
kris had a GI appointment for himself and remicade too. The GI dr blurted out some info and kris almost lost it. Lianna was in the room with us and we both were stunned. Kris will be going in for more testing but it looks like he is going to have to have a ileostomy. He needs to have his entire colon removed. We are getting a second opinion. actually every Dr we have spoken to has said get one. Including the GI dr. We will be sending his records to Cleveland Clinic and Also Mayo clinic. Both have high rates of reversal. As it stands now Kris has a 30-40 percent risk of colon cancer and he is only 20. It goes up by 10percent every decade they said..so he would be 30 yrs old and a 50 percent risk rate...not good. testing will be done by August 19th...also need to see if he has built antibodies to the remicade. if he has begun he needs to go back on the chemo drug methotrexate. We hope that doesnt have to happen, cuz he got so sick from it before.
Reilly has had a few appointments but the worse one was today. I know he has aspergers. Been told that for a while. However a Dr doesnt have the right to make demands about how bad it is. We were told he was dyslexic WITHOUT any testing! I asked how can you say it without testing for it, and was told its because he is 2 yrs delayed...uh, ok...then I was told at 8 yrs old he should be in the 3rd grade...mind you he is going into 2nd and no one in mass can start early if you are born late...not able to at all. so I was upset by it. Like I said, I know he is delayed, and autistic, but super super high functioning. And if I hear "executive functions are delayed" one more time, I will blow!
On to me...
I have a rather scary thing going on. I keep feeling as if I am having ongoing mini strokes. If I walk too much I lose my voice, and cant regain it till I settle down a bit, I lose my hearing, I go numb on my right side...the whole thing. This happens if I exert energy, either physical energy or emotional energy. If I am stressed out or anxious. its like if anything disrupts my apple cart, I have symptoms. I feel like people will think I am using it as an excuse to not get upset or cry...but honestly it happens. So I was with a good Dr friend of mine, and he watched it happen...he said I was having "vascular constriction" with output. So it opened up a can of worms..I suddenly had OTHER drs coming around. So I saw cardiology, and PCP, plus a couple of Phone consults with other Drs. concensus is, I am having severe autonomic swings, and if my body is overdone or feels like it may get overdone, it clamps down. My vascular system just shuts down. I am literally having vascular spasms that replicate the stroke symptoms. We brought them on by walking, and then by talking about a really stressful time and getting me on the defensive...it was a test, he was not serious. Somehow I manage to keep my Blood Pressure low (102/50) heart rate low (54) and yet my brain is telling my body to clamp down to save itself...Its painful, its scary to lose feeling and have no one believe that you feel like you are having a stroke symptom. Neuro agrees it is clearly autonomic vascular regulation/constriction....nothing they can do for it. cardiology suggested more sodium to bring my BP up, a mito Dr suggested mega carnitine doses, I asked for anti anxiety meds and was told no. I was told my body doesnt sense it is upset...it senses all stressors as invadors. The biggest concern of them is that I will suffer a stroke because of the restriction of blood flow. I was told to keep my excercise to low low key, all uneeded stress low, anything upsetting needs to be handled from sitting or bed to keep my energy from being zapped. and to learn body awareness so much so that when I feel the symptoms coming on I can refocus my body to a trance like state to relax the vascular system.
has ANY mito patient ever been told such a thing? I need to know what more I can do...without causing a stroke. My own mother has had over 30 strokes validated by MRI, and I do NOT want that in my radar screen view! But I know my risks, and now to deal with them...first order of business, get away from tim. I will do much better once I am. I wanted to go back to school, but I am afraid of the stress it will bring, but if I can get a scholarship or grant, I am doing it. I feel like my body is quitting on me and I am not going to let it...not willingly. I am on a new muscle relaxer...it is working. Pain is better...but I sleep!!!! yikes.
Need to get another tire for my car...one blew out on me. so bald it was crazy. Now, I need another one...it is 200 for a tire!! crazy. geesh, I cant get upset and blew my theory.
so may things I wish for, but they wont come true, so I dont bother...but I wish we could just all start over again and not have mito. I just wish it would go away. I wish my momma was here with me every second of the stress I have been through lately. I wish my neuro symptoms would fade faster this time. I am annoyed by them right now.Lots of craziness, and lots of questions...if anyone has something similar for vascular spasms and restriction, please help me understand it.
I love you all...goodnight.

Whence comes this idea that if what we are doing is fun, it
can't be God's will? The God who made giraffes, a baby's
fingernails, a puppy's tail, a crooknecked squash, the
bobwhite's call, and a young girl's giggle, has a sense of
humor. Make no mistake about that.

-- Catherine Marshall


Sunday, July 25, 2010 7:52 PM CDT


I am so sorry I have not updated. I honestly have had to wait for so many variables before I could update. Now that key people have been updated, it is time I can actually update.
I dont even know where to start because so much has been going on.
I guess I should start with the main thing....
I am living in Florida with 2 kids, while Rod is here in Mass with the other 3.
It was a decision that was made for us, and so far we have made it work. It is NOT easy but it is the only option we have and I have an amazing support system in florida. The kids are loved immensely and the family unit there is strong for us.
Until we can get help in place for Tim, or a placement for him, we cannot keep the younger 2 in the same home. It is just not feaseable.
Meanwhile to stray away from the bad for a minute, and share some good, then I will update....
Lianna and Reilly have been feeling wonderful and the Dr that suggested the trial of florida was right. Liannas rash disappeared after a couple weeks and stayed gone. She was able to cut half her meds out and was doing well. Reilly had a scary start trying to fight off salmonella from a half dead lizard, and some weird high high fevers, but all in all he has flourished. The stress is removed for them for the most part and they have been able to be kids and catch up on school work, and also create relationships and even learn how to love deeply. So once we got back to Mass, we found out it took less than a week and Lianna needed increased meds for pain, reilly too, and her rash is back...stress is making reilly have nightmares and not sleep in his room...so we are back to the same old same old...I called the Dr and told her our findings of 6 mos. Her answer was "so what is taking you so long to jump ship!" and my reply was "a job!!!!" she replied, oh. so it was a good trial and one that was positive.
Anyway back to my update...
Tim has been in a TBI program (traumatic brain injury) and has done well in it. He did the special oympics and won many medals in it. He won a couple gold, a couple ilver and a bronze. He went to regional and did well there too.
The coma and life support did a nuber on his brain. He is not the same child he was. In fact I have said to myself that my son died in that room...I have a shell of who he was. I have to say that to myself because it is too painful to see the change. The change that has become out of control and raging at times, acting like a 2 yr old in a grown mans body. I have asked God why He allowed his brain to just go and allow him to be so miserable...instead of taking him. I am waiting for my answer...there has to be a reason, and it must be good, but I am waiting. Until things resolve themselves, and we find a plan for him, we cannot move forward as a family unit. So my biggest prayer is that Tim finds healing in his brain, and heart...that he will become someone that has a purpose in life. God doesnt make mistakes, even tho I argue over that some days, I have to believe it.
Kris had been doing ok. He is in Mass with Rod too. He has had a l ot of breakthrough symptoms and pain. I got him in for his monthly remicade appt, and the Dr finally just gave him the optons...stay doing what we are doing and it not working...end up with a HIGH HIGH HIGH risk factor for colon cancer, no chance to recover from it, or have the surgery now, take the risk, and cure colitis, the crohns would still be a problem, but it would mean a ileostomy. Kris was in shock, we were in shock. Literally said it needs to be done. We are seeking second opinionsafter his colonoscopy/endoscopy august 19th. We have been researching and we know that Mayo in Jacksonville, and in Rochester Minn. have the best reversal rates for the this surgery and ileostomy. The other place is cleveland clinic. We are looking into things more. Best case scenerio is not to have to have it. but florida would be better as he could recouperate with me. Leaving Rod to not have to deal with it too much.
Kris wants it in florida because he wants to be away from people who know him so he can try to accept this life of his. We shall see, I just want the absolute best place for him.
Josh is doing wonderful. He has a job at the church and he is happy. He loves what he is doing. He is also going to school full time, and has been helping with tim as he can.
Rod has been very sick of late. Hehas shown signs of crohns as well. He is waiting on test results. But has lost almost 50 pounds in a shor period of time. I am happy for that part of it fo him, but not how it has happened.
Lianna and Reilly are honestly doing well. I do not like keeping them apart from their daddy or brothers, but they have seen them as much as they can, and we skype and talk often. Lianna is briging her bunny rabbit back with her to florida and we will have some of our things with us.
To say that we are all happy would be a lie. The younger ones are hapy because they have so many peoplewho love them and they see this as an adventure. They dont want to be hurt, they just want to be surrounded by love, acceptance and security. I am making sure they get that. They have family around them.
Josh misses reilly a lot...and enjoys having him around. It has been sweet to watch kris and Liannas bond, and know that he will always be a great big brother for her. She has a connection to him. Tim is the reason for us all being apart. it may sound mean to say it that way but until we can get pans in place to help him, we cannnot keep us all in one place. It would be harder to try. AndGod gave healing in 2 kids while we were away...go figure. I would really like to be a family in one place as opposed to a family of distance. I would not even mind rod traveling again for work if it meant we all were starting in one place! I have a committment till May 2011, and after that we will hopefully have direction. We both know what we want, so we just need to see if that is the right thing. My heart is there. My heart and the kids hearts are there. Also like I have witnessed and so has so many people, including the local Drs when we first came back, that these 2 have gotten so much better. The goal was to try tim down there to see, but we have no place for him to be down there. I am in cramped qtrs as it is, and to have rod and tim it would be TIGHT. Butif God opens that door for us, then we will attempt it. I want him to experience joy, and love, and all the things he used to have. I also would like to see him achieve some healing. I just pray that it is done safely.
I am still having chronic pancreatitis. My amylase and Lipase still remain elevated. I have a hard time eating, and staying out of pain. But I have been getting much better at moving around.
I have been trying to keep the symptoms low key and have done real well most days.
So please...if you even still read the page, yup, we are all alive. But please pray for our sanity. We are losing it quickly. Like I have said so many times before, we dont understand why these things happen, but we cannot argue...I have tried, it honestly doesnt work!!! It is downright painful when you try to argue with God.
Sometimes answers come when we are down flat on our backs...I have been brought to my knees for sure..I just am waiting for some directions. when I asked my momma for help today she said "I am not your solution..." to which my reply was "no, but you are my sanity!"...we would like answers, solutions, and even some more sanity. Definitely would pray for heaing of this behavior we see. Pray that the new meds will begin soon and work. Pray that somehow we see positive changes and direction.
I promised an update...I meant it, I just had to wait until the key people knew personally and not read it in an update....
I will update more frequently...maybe even daily, beginning next week when I am back "home".

Saturday, May 15, 2010 8:30 AM CDT

Before I even start to update...
Lianna is 13!!! she has pink hair because she wanted that for her birthday...I love my girl with my whole heart. She is my life. Without her, I would just be lost...she iratates the crap out of me some days but I just love her beyond that and more....

and I am sorry for not updating so much!
Updating has been a real issue lately because of events taking place in the home.
First I have to say that a year ago I speciically prayed for total healing of tim in one way or another...did I certainly believe it could happen?, yes I did...did I expect it to happen?, yes I did...did it happen? sort of...
so should I say God is to blame for all the issues going on? no.
I cannot explain the uncertainty of life right now, and there are people who expect for us to be able to say more than we are, but in reality there is so much that we just dont know, and therefore cannot even explain.
Tims blood work looks amazingly well...so was it healing? possibly. Was it a resetting of his body from the coma? more likely. But can we say it was not God, after all we asked for it...so we accept what we are seeing and let it go for now as a healing of some sorts.
Now, the blood work looks better but the brain damage is far worse than we ever expected. Almost unbearable.
All I can say is the medical stuff can tear your heart out, but the brain damage that has occured has ripped a family. Do I blame tim? no, I do not. DO I blame Drs? the jury is out on that one...do I blame God? not at all.
I prayed that God would not allow certain things, but for some reason He has. I have no answers. But I have found most of my life that when I start trying to figue things out because they seem confusing to me, is when I see God really changing things His way so I will stop and listen.
I hate what is going on with my family, we all do. We all want to go back to being a family even with all the medical crap going on, but the dynamics have been thrown so far out of whack we are in shock.
We are following the advice of several people and Drs right now, and its working. I have been blessed with the most loving and amazing woman in my life to be my confidant. I see Gods hand through the whole relationship. My friends have been advisors and supported us all through the quick sand we are in, another family has given more to us than anone can even imagine so the younger kids can be healthier and ignrant of the mess with tim.
Decisions that we thought were ours to make have become suddenly decisions that we have been required to make, and thats ok, because I know they are in God hands. People who do not think they are useable by God have been instrumental in the path God is taking us. Arewe scared, O YES WE ARE.
We do not see how we can do this without guidance, and that is now the prayer I have....no more will we ask for healing. we will simply ask that you all pray for guidance and our ability to accept the answers. He will not let us down, now we just have to believe that..we are in a situation where changes are happenng...Good ones, scary ones, but definitely ones we know are meant to be...
thank you to the people who have traveled this road with us. More updates will be coming soon...
I promise.

Sunday, April 18, 2010 9:04 PM CDT

Ok, I have had some emails from people wondering if I was ever going to update again. Yes I am..just trying to do it justice.
Every time I think I should update we have something happen that makes me hold off till we get more info, but I realized after the 8th email in one week, that maybe I had better update.
I really have no idea where to begin because it has been a ridiculously difficult few months with Tim.
I should start by saying that Lianna and Reilly have done very well. The pain the usually have is practically non existent, and Lianna has not been sick but one time. Reilly definitely could have used his IVIG because he had 3 different bouts with high fevers and throwing up. He also managed to get salmonella from playing with a almost dead lizard. LONG story, and I will share it some day..just not now.
School was totally caught up (thank you laura!!!) and now I just need to finish the year up...maybe another 5 weeks left...maybe.
Tim has had a great time adjusting to life in a school system. He is in a class for brain injured kids age 18-22. Because of his age, and economy, we have lost all his services. So any PCA that we need for him, we have to cover out of pocket. and we need a lot of help with him.
We have no more coverage fo relly, and Kris was knocked down to bare minimum as well.
Tim has become increasingly dependent as months wear on. We were told that you just cant go through what he went through with no effects...I just never dreamed it would have been this severe, and with no services! But he is our son not the states child, so I know we have to do this.
A lot of you dont have all the updates we have shared by email with a few. NOT because we dont want to share, but because we are trying to do the best we can with a bad situatuon. We have come up with a plan, and have put i in place that has been simply wonderful for the younger kids. It hasntbeen easy, but it has been wonderful for them. Some times we have to mae choices that are hard and we need to follow our hearts prayers for our kids. We are doing that.
I have said I am watching doors close, but windows open. When we have had the chance to sit down and put our ducks in a row, really pray about alot of things, and get a plan, I will update a lot longer.
major part of the update right now, is simply tims decline. Medically he is relatively stable, but cognitively and brain function wise, it is poor. He is literally lost.
Please just pray that answers come our way.
I know, I am very vague, but I honestly cannot explain much right now. I did my best,while I am sick myself and I am tired.

Sunday, January 24, 2010 7:05 AM CST

Ok dont have a heart attack! yes in fact this is an udate.
I have a good excuse though, my computer died and it took months for it all to be fixed. First they said hard drive, and it got replced, then after 3 days of having it back, it began doing funky things like missing letters, and my mother board crashed. Now I have had it a couple days and I am attempting an update.
As far a everyone goes, we have been holding our own somehow. Mentally things have been very difficult. The hardest thing to accept has been the decline in Tim.
He came out of the coma looking really good for him, and he had so many parts of him that had rested for a month that he looked like maybe he overcame them...but we all know the mito beast had other plans.
He is on medicine that has blown him up weight wise, but it helps him. He mentally has lost a TON of ground. He has suffered tremendously from this. Medically his kidneysare not back to baseline, unlesswe call this his baseline, and then I guess he would be there then....hearing is declining, muscle strength declining, lost all of his reflexes including gag refelx according to stroke clinic.
o did I mention stroke clinic?! ya, well it seems that a person I knw at one hospital got a glimpse of his records from the ICU and tests done and STRONGLY suggested he be seen in stroke clinic....o ya, that was a good idea. We have 2 neurologists who cant agree on one test result, and they decided to throw their hands up, so we are giving up on them and goig to an MDA neurologist now that seems to rally be interested based on test results and will offer some help. We have appts set up in cleveland to help out too. Its not even to the point where we ar worried about losing tim, because in many many ways we already have lost him. Now we just hold on to the body, and soul....who he was is gone. What we have, is a shell and we need to make him the best he can be. He is sleeping about 16-18 hours a day and is pretty near tired the rest of it. We are pushing him to go to school and give him things to do. The part I am tired of is hearing everyone who just looks at him that "he looks good and he is doing well" but then they walk away and what we get left with is a kid who is wiped out from trying so hard. So we are discouraged.
Well now that I am typing I see my computer is STILL missing letters as I type! ARGH,..I hae a warranty but thi is nuts! I am tired of it.
As for me I have had some very stressful moments the past couple weeks, but I have gotten myself mentally to the place that I need to be right now. Momma is really making it possible to talk through things and see what it is I need. Unconditional love and support has been KEY to it all. routine comes next. Making lists of pros and cons to what I need in life with my family vs what is expected. lots of things to think about and maybe change.
some people may never understand the emotional stress that comes with this life, but yet choose to insist they know what is best....best is relative! the best right now is being with someone who loves me, accepts me, and supports me...best is having all of that with my family and health intact. Best is saying mito doesnt exist...best is laughter and joy....best cannot happen...so we settle for what is the best for us. Best for us is making it possible to remain as healthy as we can, being together and knowing that we will support each other through it all.
best is also having the system around us and knowing where ever we turn there is another person who cares. Best is just knowing.....
Since my surgery and the things the surgeon told me, and since tims little full body vacation, things have definitely changed. Yes we know we can handle it because we generally do. We know we can call on a few pople to support our choices, and we know what we believe in to see us through it all. However our life is at a crossroads right now and we are trying to decide what way we are being asked to go. My heart is with my famiy, but with them in Florida. (no not disney world!) Medically that may not be possible as far as Drs go....but I have been told by MANY MANY specilsits in boston that if I want to see them be pain free and clear liannas skin up, then I need to be in sunshine and ocean water more than mass can offer. We were told Tim mentally may perk up in the sunshine, his body may do much better. I was sat down back in early decembe by a Dr at Boston Childrens hospital that said the best medicine that she could offer would be to give tim 6 months in florida to see what his body did. She said it would heal liannas skin, and give reilly and lianna pain free joints. How can I look at the kids and say no to the pain free and healing? but how can I say yes and give it all up at home to "see" if it works? So do I get a full time job for 6 months and get an apt in florida to see if it works and if it does, make the plans to change? or do I jump both feet in and make the change????? I just dont know so now I worry...I want the best for the kids, for me, for all of us....Rod is pain free when he is in florida. Is that enough of a reason? Could we do this? is this a leap of faith? is it wishful thinking? I just wish someone would say to me "do this and this IS what will happen" but instead all I get is to do what I want but that it looks like it would be for the best. I hate choices!!!!
Rod and I are making lists mentally...
we have family in florida...but realistically?? just cant be sure I am ready to make that leap yet. maybe in a couple of years....but tim? will we lose more if we wait?
life keeps changing but im trying to hold on to the merry go round while the big kid on the playground wildly spins it out of control.
hopefully the new neurologist wesee will help with some choices.
I will try to update more now that I have a computer. Sorry about all of the time lapse. I cant update from my cell phone.

Tuesday, December 15, 2009 8:17 PM CST

Ok, I am sorry!
I havent felt like updating at all. I spent the better part of 6 weeks recovering from all of the junk going on regarding surgery. It was rally not fun. Trust me!
I am finally able to do things again, but definitely nowhere near baseline yet.

quick update on kids.
Kris is doing well, except he still cannot go more than 5 weeks before he needs a remicade dose. that is not sitting well with some Drs.
Tim is still having major issues. He still has amnesia issues, and he is still struggling emotionally. He nuerologically is having major setbacks still.
All in all he is still strugglng in a major way.
he is enrolled in a special 18-22yr old program now because he really needs this to be able to manage things on his own in some cases. Its with the school system, and I think this is for the best.
Its winter time now, so now the pains begin!!
Lianna and Reilly have both been rockin and rollin with pains in their legs. They have had cramping and real pain after playing or being outside, and the cold has even set in yet, It will be bad starting tomorrow and onward.
My computer is still acting up, it only types the letters it wants to. I hate it as I have to think to look back at the words more closely.
My heart really hasnt been into parenting or much of anything else, simply been too sick or too tired. trying to find my place again. Something definitely happens to the "person" when you go through the past 5 mos like we have. You sort of lose direction or lose sight of what is needed.
I can say with assurance that I know where I am and what I need to do. I know that I havent been left alone to figure things out, in fact I know that God gave me a special angel and bestest...I just call her momma. If it hadnt been for the ability to just "be" and talk real talk, I dont think I would have been home right now.
I am trying to not focus on medical things in the home, trying instead to just live....not working out all that well, but trying.
I will try to do better at updating bu I cannot guarantee I will succeed! I am human! I will try.....
Christmas is coming and so is a new year. I am hoping for major changes, but good ones. I wish all m friends with and without mito, a Merry Christmas!

Friday, November 13, 2009 10:29 AM CST

I quit.
I am done being sick. I am still on pain meds and zofran/compazine. my energy is gone and I had to go back to the hospital to be looked at because I look like crap too. The Dr said it when I walked in...she said I looked like...well I cannot say that word. Medically I am fragile energy wise. Pain is pretty much there all the time but not surgical sites, more they think I have billiary involvement still. great. We ruled out blood clots and pneumonia, and instead I am just sick from pancreas most likely. Also I found out the hard way I am allergic to IVP dye....fun day today. emotionally I have been fighting a bunch of emotions since july when I had to leave. I am the bottom and I am working hard to feel better but until I am not sick or tired I cant see how. So its been tough.
Rods arthritis is really bad now...so we both are done. We are simply done. tired.
will update later with info on tim, it just hasnt been positive...



Tuesday, November 10, 2009 8:19 AM CST

Wow, what a year.
Last week I finally listened to my body, well I didnt really have a choice as it revolted on itself! but I had emergency surgery to remove my gallbladder. What really happened was the gallbladder was adhered to the liver a tiny bit and they had to take a small piece of it with it. Nice to know that. Then the reason why I was feeling so bad was I had developed pancreatitis. So I guess I had the trifector. I am still pretty much down. I am so nauseas still. I am able to eat only a very tiny bit or else I get in a lot of pain still. This has been a horrible experience for me.
The brightest spot in all of it has been I had my "momma" come from florida and spend a couple days with me. She made a lot of the miserable stuff feel not so miserable. We watched Richard Gere movies and laid around in bed. It was perfect.
I am still on percocet for the pain, and zofran/compazine for the nausea. I am hoping this week shows tremendous improvements.
Now I do have to say this publically because of the fact it has been an ongoing joke over the years, but CHANTELLE, you are LEGIT over 40 now....lol...welcome to mid life...
ok, I am done.
I am going to listen to my body and continue to do fluids and rest..I have a big month this month, and I am trying to be good, 3 birthdays coming up and I want to be alive and alert for them.

Tuesday, November 3, 2009 12:34 AM CDT

Just me updating...
I am in tufts medical center pretty hopped up on pain meds right now, so I can rest before I have an emergency surgery tomorrow(today) morning. Seems my gallbladder decided to revolt on my body. Pain meds r freaky!
was in ER for 16 hours...fun fun....but I was resting, now I will be forced to rest more.
Rod will update later.

Friday, October 30, 2009 7:00 PM CDT

I know, its a miracle...I have updated 2 times in 2 days. lets celebrate...
Actually I am updating because so much has gone on.
Sometimes the hardest medical problem of all is one that no one wants to deal with. Facing the truth of the past few months has been very difficult, time consuming, but it has been the one thing that cannot be pushed back in to the little pockets in my brain. This time, it is something that just needed to be fixed. Facing the truth of what happened from june through now has really taken its toll on me physically, and emotionally. Physically I am showing major signs of mito crash, and have had soft signs for the past 2 months. Ignored most of them for a long time, including the 30 pound weight loss, and fatigue. Yesterday afternoon was a wake up call when I was sitting down and lost vision, feeling on my right side and autonomic symptoms from blood pressure and heart rate, all the way to tremors. Obviously I am not stupid and I know what took place, so it was a huge wake up call.
Little things in the past week have been faced and dealt with. If it wasnt for the love of a momma and husband, I can honestly say I would not be standing right now. I am honestly managing daily because of them.
Today I have come to the realization that I am done. I cannot continue doing things this way without losing who I am inside and I am not willing to lose anymore. So today with as much strength as I could manage, I made a decision. that affects everything I ever believed in for my kids...
I have decided to put tim in a special school. He has lost so much ground mentally, emotionally and physically. He is unable to stay completely safe and frankly it is like babysitting a toddler most times. So before I lost anymore ground medically, I had to just come to the conclusion that failure was better to admit now, than getting so sick I cannot recover to baseline.
Tim is all excited about going to school. He thinks it will be like playtime, and it will be from what I know of it. His nurse will go with him for a few hours a day, and it will give me the time to work with Lianna and Reilly so they can finally have some peace too.
Living here has been living in maximum stress. I was told that I have been living in a pure adreneline state for months. I will agree to that. We all have. I am done. kids are done. Time to forget the world exists and just recover. So the plan for the next few weeks is to eat, rest, drink, excercise the appropriate mito way, and cuddle up with the kids. I cannot give in to the stress, nor can I live on the edge. I thrive in a stressful situation, and I am at my best when I think on my feet...but my feet were taken right out from under me yesterday and I freaked out. My Dr told me today by phone when I called with the symptoms "so, would you like to take care of yourself or would you rather have your family and the ones who love you visit you in the same way they visited your son this fall"....
OUCH.
but she also said it wont take much at all to turn it around quickly... My iron is low, and it seems my CoQ10 level is low. I am going to start working hard on those. I know in my heart once tim gets into school and that stress is away, the other kids will settle in to a normal routine and pattern. Then during all of this I am changing all the apts so I am not doing them with Tim, and I will be resting the way I need it. I am putting my needs ahead of the kids for the first time ever....I now really understand what a mothers love really means. it is because of that, that I know what I have to do to make sure I am here for them in the future not just for now. So...lots of growth in the past 24 hours. Lots of changes...but finally a monkey off my back, and true rest.
And the other decision I made is I am no longer going to be working. I am done for a while. I honestly have to take time to heal in many ways....
boy does it feel good...
So for the next short period of time, I am not going to be updating much at all. Rod can update. I am going to be resting so I can go be with my momma and rest even more. The christmas tree is up already, and the house will be decorated by the end of the weekend. I can definitely say that brings me such joy, and is very relaxing. I love the holiday time, so this is a perfect time to plan my recovery. Realizing I cannot wear a dozen hats has hit me hard, but the only ones I want to wear right now are wife, mom, and daughter. Anything more than that is taking a backseat for a short time. Once I master those hats, I will add more. I can say for a fact tho, that those are the 3 best hats any person can wear.
So....
if you all want something to pray for, then please pray that I get back to baseline FAST. I know I will, but faster would be nice..I said I was going to rest, I never said anything about being overly patient about it.
keep malisa and Bonnie in your prayers too.
I will update if anything major happens, otherwise Rod can update day to day stuff that is going on.

Wednesday, October 28, 2009 8:00 PM CDT

evidently I have more than one stalker! No fears Meghan, you are still number one.
Tim is still having lots of troubles with his kidneys and residual blood pressure issues. We upped his meds one more time, and will be doing it again one more time.
His Gtube looks nasty with granulation. I offered to burn it off and he looked rather horrified. I have done it before but you would have thought I had a spike with flames shooting out of it, with the way he looked at me. gee...
tonight he has a fever, and is all red. He doesnt look great but its a lot better than he did.
Kris finally has the pain back under control from his breathrough on the crohns front. His arthritis is bad tho, and he hurts during this time of year. Hoping it improves a little very soon.
He is working very hard at getting a job and he has one lined up for a few weeks already. He is very excited. I like kris when Kris has a purpose in life...sure beats the alternative kris!
Lianna has been driving people a little bonkers with pain. She struggles with the cold and damp, and has complained a lot even sitting down, how much she hurts. She is a trooper and she doesnt stop what she is doing, but I hate seeing her cry.
Reilly has been bribed. He can get money to buy presents for christmas if he will just learn to read. I am ready to give up!!!!! so today he watched the dvd and proudly asked me if he could tell me what he learned. so we have sounds now...finally. He needs to go back to neurology but I want to forget it for a while. I dont want to go back. not now at least.
Josh is doing well...looking for a job with locked up kids. I am proud of who he has become but hope he remains safe!
Rod is sufferring with his Rheumatoid arthritis. He can barely step on the floors as it feels like he is breaking bones. he says this. he had Ultra sound today and it showed bones going away and swelling. He hates this, and would be down south if he had a choice.he cannot take the pain much longer. hoping the enbrel kicks in soon and works. Then he can manage here.
I am hanging on. Cortisol was low normal...gallbladder is inflamed and full of sludge. yummy huh? my liver looked "puffy" on the ultra sound too. lots of other things are going on, suffice to say just having a minor mito crash..I will live, but I will need to rest in order to function.
I have been sleepy a lot lately, and I am going to shorten my updates up for a little while so I can recouperate.

Sunday, October 18, 2009 7:40 AM CDT

Wow...has it been this long? I am so sorry!
A LOT has been going on.
First I should say people have been sick and one of them was me. so when momma is down, nothing much really gets done. with that said, I will try to catch everyone up.
Kris has been pretty miserable medically. He is in a LOT LOT Of pain. His joints and muscles hurt badly. The Dr had issues with setting up his normal remicade appt and ended up having it go out by a couple of weeks. SO, in the meantime he ended up having a major flare up of crohns and pains in joints. He is back to barely eating much, and waiting until this week for remicade because the Dr has to now rush and get him earlier on the schedule. Maybe had they left it alone it would have been fine....he is also scheduled for more testing very soon because now the question is if the remicade is helping him heal or if it is just buying us time. Seems to be just buying time and we need something more done. Originally they told us if remicade stopped working, then surgery was our only option left. Kris never does well with surgery, so we are worried about that.
Tims blood pressures continue to be an ongoing problem, but we have increased his meds yet again and I think we are finally on the right track, so now we need to continue and see what happens. Everyone that has been hanging out with tim or has had close contact with him has asked me if he had another stroke. I cannot say but I will admit he is very different from before. Very flat, very monotone, and certainly his whole mindset has changed. He is a different person now. and it is weird. Its like learning a new person and I am not sure I am liking this. But we perservere. He is walking a lot more and doing ok. his legs turn in, and he is tight, but besides that he has only fatigue as a major complaint. So we tend to not do too much w him. Tim has a new kitten to replace felix his old cat. Felix died while tim was in a coma. He was a sick little thing, and was also depressed with tim gone for so long. So little princess jasmine (as we all call her) or Jazz as tim calls her, is adorable. She is a litttle tiny black kitten with white spots on her nose and face, and white paws. She pops like popcorn as she runs. she has been a great diversion from the stress here.
Lianna has had a few days of intense pain, but we are on top of it now. once we get control of it she ends up being pretty good.
The Reilly man has been having a tough week. he is in his own bed all by himself now for 2 weeks and he ended up with a stomach bug the other night. He certainly did not like that. neither did kris who was babysitting. Praise God Jeanie our nurse was here and hadnt left quite yet....needless to say she was a BIG help! Rei is doing better now.
I had the stomach buggie too. I didnt fare as well as the kids tho. I had 3 things at once. none of which was a help to the other and knocked me off my feet for 3 days. I have to go back to the Dr monday for a check up, my cortisol stim test and blood sugar check. I know the results are going to be off, so why bother...but she will be mad if I dont show up...o well.
Rod has been in terrible pain and he is on enbrel. He can barely move most days but is working very hard and finding the right mix of movement and ignorance to get through the pain. Seems to work some days, other days not so much.
We have been feeling so blah with everything going on here we have all begun planning how we are going to decorate for christmas. We have the attic full of decorations and things, so we need to figure out how to play with them this year. It has been fun making the plans and I think we are going to definitely start Nov. 1st putting everything into place.
A lot of people have asked where things stand on the house and addition. Upstairs is 99 percent done. Just a couple windows DEFINITELY need replacing. Those have to wait for spring -just cant do it...downstairs is deperately needing to be completed before long. plus we need 2 windows down there. One thing that has to be done very soon is our back door. We found out that we have an entire door sized bee nest all around our door. We need to rip the frame out, and rebuild the door frame and put on a door. With Rod feeling like he does, it looks like it will be a josh, kris and mom job (with jeanie help!) Lianna is allergice to bees...deathly allergic and we need to get that done ASAP while the bees are too cold to live. Once spring comes, we are in BIG trouble again. playroom is almost painted and then the foyer needs to be painted. Once those are done it will be replacing a flooring of a small area, and touching up things THEN we are done! very simple small things but take time and cash to complete. I am sure lots more could be done, but I could care less! LOL...
school is in full swing and we are doing pretty well with it.
I have lost 28 pounds between stress, sick/pain, and more stress, but it isnt bothering me too much! LOL
once again if it wasnt for the fact we have some truly amazing people in our life, we never would have gotten through any of the past summer. It wasnt one person, or even 2..it was everyone combined and everyone who prayed.
I can honestly say I had never felt so drained as I did this summer, but our friends really rallied together and held us up. Its weird when you look back and see who was there and the timing of when they were there, how much God really was in control of it. Even back in July before anything happened, God completely was paving the way with friendships and support. The when things went down fast, God truly had us covered with love, prayers and hands. It certainly changes what/who really matters to you. You defintely realize how strong you can be at the same time as being weak. you also realize that it doesnt take blood to bond a family, it really is deeper than that, and it is precious.
We have a lot of appts coming up for tim, kris, me and lianna, so I wont be updating until we get all those out of the way. Plus I am seeing momma soon, and it will be impossible to update unless it is important.
As always thank you all for the support and prayers. its the only way we have stayed as a family through this past summer...glad 2010 is on its way,even tho 2009 was a growing year, I just hope it 2010 better for all of us.
ttfn!

Saturday, October 3, 2009 8:17 PM CDT

On October 1st kris turned 20 years old. He has had a pretty hard life since birth with medical issues, but has never been afraid to fight with all he has. He has been a hero to me for going through all he has medically and physically. I am proud of him in so many ways.
As for tim...
is it not going well at all. He has such horrible headaches going on, and they are blood pressure related. It has been horribly high and we arent able to help them at all. Poor kid.
he cant tolerate much for food, and he is trying. Its sad to see reality but we are working very hard to do things this way for as long as we can.
We have testing occuring in a couple days with the hopes for more answers. Will update when the answers come in.
Hey, number one stalker....you are doing an amazing job!! sorry I am not much better at updating or responding lol..

Thursday, September 24, 2009 3:15 PM CDT

I just wanted to quickly update and let everyone know that Tim made it through this very special trip, not fantastic, but at least in one piece.
He has already been having major trouble with feeds, vomiting them up, and also with his fluid balance. He honestly is struggling with those. We have lived on Zofran over the past 10 days and he hasnt done an awful lot of moving around on rides. He spent the majority of his time laying down watching tv, but it wasnt home!! or Hospital!!! so that in and of itself was a good thing.
He got to say Hi to just about everyone he wanted to. I think he would love to have said a final goodbye to his best buddy E but he was really not feeling well and had to forget that plan. Its ok tho, he will talk to him again some time.
I am still in Florida, sitting in the most amazing room on the planet! I have mickey lights, and minnie too. I am over looking a courtyard from the 4th floor. I have the big doors open, to the patio outside and can hear music and laughter. I am staying with my Disney momma and going to a special sale with her tomorrow. I have my computer with me (obviously) so I will be able to finsh off a document I need to do, then I get to spend time with my momma and look around. Tonight we are doing wishes. I get to do this with the most important woman in my life, and it will mean so much more to me.
I leave on sunday, to pick up my mother and drive home.
Tim has many appointments in the next week, and we are hoping that he will improve as the days go by. We know he has another sinus infection but his lung sounds have diminished yet again...with everything else going on, this would not be good...
so anyway..I am off for now, I have things to do and then spend the last couple days just being with my momma...she is absolutely beautiful and I adore her completely....can you tell!?... :)
will update when I find out any information on tim

Monday, September 21, 2009 8:23 PM CDT

so many people made this trip possible and if I had to name them all I know I would miss someone....
But from the bottoms of our hearts we thank you all.
Ksue, you did more for us than you will ever know. THANK YOU.
Each of the kids has had some time to process what has gone on in our home and life over the past couple months and to be honest it has been nice to be away from staring eyes...Kris has been able to express his anger at the way things were at home while we were at the hospital. Josh has basically walked away from everyone and has cleared his mind while here because he was the primary caregiver while we were at the hospital. Lianna has been clingy as has reilly. Reilly was so funny when he realized that tim didnt have a line anymore. He cheered! lol..but also he expressed intense fear that maybe tim would die with out it. So we got to explain things.
Tim has been up and down with anger and frustration. He is unable to eat more than 200 calories AT BEST. He is refusing to do much for feeds. he is doing them but he hates it. But he is barely doing 900 calories a day for feeds. fluids we r getting in but not quite enough. better than a few days ago but not great.
he is walking some but when he tries to walk for a bit, he gets so weak that he gets nauseas. so it has been a challenge.
Our friend anna dressed the younger kids all up for a halloween party tomorrow night. So we have costumes all created, and she is going to do make up on them too. it should be fun. She has spent so much time with reilly that he thinks he belongs there!
We have learned that anyone you talk to down here is always addressed as Ma'am, or Miss..or Mr and Sir. it is so funny...but we are learning it. Reilly and Lianna have some new friends their age. kyra and Alexia. They are all very much friends.
I ended up being the cool mom this time. I rode rockin rollercoaster a few times, at one point I did it 2x in a row...ya, that was fun. I did dinosaur for tim, my headache was pretty intense after the second time through, but I did it, and I dont want to have to do it again if I can get out of it.
there have been so many blessings that have occured for me personally. I am in awe with all the things that have gone on...
Please keep praying for tim as he is really not back to baseline yet and he is struggling with energy, and physical strength.
As soon as we get back we have to begin months of school work, and lots of continuing rehab. Lots has already happened but lots more to do. We have TONS and TONS of follow up appts with the hospital coming up.
I will update in a couple days when things slow down some more....
Thank you all so much for every ounce of stalking, praying, begging, and supporting.

Friday, September 18, 2009 6:31 AM CDT

well we have had barely a couple hours each day where tim is able to be with us. We spend a lot of time back at the house resting, or taking him to the pool and letting him get in it. He is not tolerating his feeds at all, and he is not eating. He has had an apple each day, and last night tried a little cheerios but beyond that nothing else. He likes gatorade so we have got him drinking that...but not a lot. wish it was more.
We have done a ride each day that he loves, so that we can all be together.
Today is the big day...today is the day Dinosaur happens. We were trying to get him stronger before we did this and now this morning it will be our time!!!! lol ugh!
I end up with sore neck every time, so now I will again. We have a photo of tim on all the rides he has attempted, and he smiles and thumbs up us. but it is worth it.
I will upload all the photos later.
Tims been with his sweetie kimmie. He loves her to pieces. should have seen his expression. He was definitely in love...too bad she is married huh tim! lol.
he has been with other friends too.
this trip would never have been possible with out the prayers of people, the arrangements made by everyone and the special help we have had here.
his physical therapy is going GREAT. he walked a bit, has done 27 stairs 3x since we have been here. He is totally becoming safe transfering now. still crossing his legs if he walks too much (50 feet) but he at least goes slow and watches himself.
we are going to be seeing our friends from Geargia today!!! He will like that too.
I will update as I have time.. I promise.

Friday, September 11, 2009 6:05 PM CDT

Ok as of 4:30 this afternoon Tim was home from the hospital. This is a major accomplishment that all of you were a part of. Things r very different for us now w him but we need to find quiet time to adjust to the new tim.
He is very happy to b home.
He is flying on monday to florida and going to b with his closest friends. He may not get to do much but he is excited to be with them all.
We will upload photos as I learn! I have the first steps figured out, now I need tim here so I can find out the rest.
Thanks for the prayers!

Saturday, September 5, 2009 7:15 AM CDT

I just wanted to let you all know (especially my stalker that loves us...and is so devoted), that tim has been moved to the 7th floor medical floor after 4 FULL weeks in PICU.
He is in an isolation room to be sure he doesnt get infected with anything else this week. He is still extremely weak and has lost a lot of muscle mass, but he is trying. He is walking a bit with a walker, but mainly just safety transfers. He completely is happy and thrilled to be up there now.
I begin my trek today, and that means from here on out I will be getting messages by way of daddy and skype.
I am setting things up in florida for Tims arrival in a week. I am leaving my mother in florida at her sisters house and going to my friends house for a few days then start the trip awaiting tim, daddy, and the rest of the crew.
My "mama's" are all down there setting up things for us, and I am making sure they are all set.
I will update as I go along. Also I will upload photos into the main message when I figure out how I can do that. I need to ask Malisa how to do that!!!
I cannot tell you how much this is needed, and how joyous of an occasion it was to see tim on the 7th floor...thank you all for being with us through this. Like I said before...our friends and church are simply amazing and we would be lost with out all of you.

Thursday, September 3, 2009 9:17 PM CDT

Well, its amazing to think it has been nearly 4 weeks impatient and longer still of tim being sick.
the ultimate part of all of this is just seeing where we have come from, where we have gone and now thinking how we go on from here.
It is literally like having a brand new baby. Still no manual though to help with changes. The price of that childs care just went up 3 fold! and now, thinking about the exact timing of it all...wow...
Today was a day of growth. We saw tim take his first day with no narcotics on board. He had nothing but himself and antibiotics/antifungals on board. He is still on TPN and Gtube fedings with the hopes of transitioning him to nothing by line and only by tube, even for a short short time. We all know the reality of it, but we seriously want to try this. So many changes, but the best thing was the fact that he seemed to be happy today. He talked to us for a little while and asked questions. He wanted to know things, so we tried to fill him in. Hard not to give him all the facts, but we tried to give him some details and will fill in missing pieces later. He did very well with PT today. He walked about 20 steps. He is needing people on each side of him, and a walker, with his wheelchair behind him, but he did it. He looks like a body on a set of toothpicks, and it is kinda funny, but he honestly is working hard at it..and we will continue to push him along. Not going to let him become complacent in his recovery. He still is not sitting up straight all that long. He gets very sick up right. However he desperately wants to go to Disney so he is working hard at that. I jokingly told him if he expects to go on Dinosaur then he has to sit up and be able to hold on or I cant say it is safe for him...He said "o dont you worry I think I can do that ride just ok" so we will see.
I had a nice afternoon with people at the hospital who have built a relationship with us and whom have been with us for years going through all of this mess. TONS of hugs and wishes. Drs and technicians, even staffing were joining us for hugs and wishes. man we are so blessed to have them in our lives.
To look back is to re-live so much pain, and emotional upheaval, but it also can bring us comfort and peace, even closure on some things. The intense raw emotions actually get you to soul seek. and thats not a bad thing. It was a challenge to look at every last word u have said to your kid over the lifetime they have had and wondr if you could have said something different or maybe should not have said it at all. it also makes you wonder if you could have avoided this crisis "if only"...not a healthy place to be by the way! and then to look back and realize that during your worse moments people were watching you...phew...
I learned early on that walking outside brought me clarity and freedom from the air in the hospital, and from my own mind. I would crave to walk. Each time I did it I felt I was creating a place in my mind that I could build on and run to. It worked.
Today it sunk in that indeed life has changed. We got Tims new chair...it was traumatic for me when I saw him in it. Before that it wasnt real...him in it was real. to realize he is still fully FULLY dependent on us for ALL his personal care, is so very hard. O man it is killing me. I know when they told me when he leaves here it will hit me how far we have come. I know how far we have come. I see the enormity of it. I just need the privacy to lose it! I cannot sit down and grasp all of it in the view of others to judge if we are doing it right. I need to sit in the van, music cranked...and sing my heart out-losing it as I do...When I see tim with different people I will lose it then too. I know when I see him doing things I will think of the past, and it will hurt. Yes we will focus on the future but now I can really see what they mean by the mourning process will be real for us and to let it go its course....The one thing I do not want to have in private is the fact that I want everyone to be assured of is Tim is a miracle. He is a true testament of the prayers given up for him. It is real. It is important and it is the reason why he IS here....
Thank you all so very much for given a smidgen of yourself to us all.
tomorrow is transition day. We find out in a team mtg what will happen form thsi day forth. game plan is go to 7th floor of hospital! YAY..however we need to get our plans in place.
please pray that our GI team and metabolic team coordinate all of the care during this transition.
thank you all for cking in with us.

Tuesday, September 1, 2009 8:16 PM CDT

Tim looks absolutely wonderful...thats a mom talking!
He actually looks pretty good, he is alert more each day but not a whole long time...He has been trying to stand and walk. He took about 8 steps using the walker and being held by both arms. He is shaky and just trying to learn to move more. He cannot pull himself up in bed. He really tries, he honestly using his enegry to do it. But he doesnt actually move.
Every time they try to use tubal feeds he throws up. He is not liking that too much, but we need to keep the feeds in his belly so that it will keep it working a bit. I refuse to go back on a line right now. It is going to be tough, but I think we have fought enough the past week to make it clear we need to wait on that...and I think we won that fight...I THINK.
We have had some really rough days past 2 days. It seems we found out the hard way, (I will spare details) that the PICU team was not adhering to the Drs who know tim best. Once we figured that out, we went to those Drs and made them very aware of the situation, and lo and behold, things are changing...hmmm funny how that works. AND to make it worse the PICU Dr said "it must have been a misunderstanding" Uhmmmmmmm not! O I hate when they cover their behinds like that! We would have had serious set backs if we hadnt taken the info the team, and had them call a conference with the ICU Dr.
Just has been a horrid time...
with all that said, we moved tim to a room with a window, and he is not thrilled with that as he is very confused by so many things. But it helps him see day and night because he was unaware of time in a windowless room.
He is not being pushed hard to do much, but I got him to drink some seirra mist and eat 3 bites of a saltine cracker. He seemed to enjoy that a lot but didnt want to be sick so he was worried...
He also got to spend some time with Kris. He loved that a lot! He played the WII system that I insisted they allow in his room. he had a lot of fun...for an hour! He played baseball..lol...and soccer...the funnier thing was he played boxing...It was fun to watch him interact, but more so that kris was very patient with him and comforting.
I am very tired and will try to update as much as possible. With him awake now, we are not having as much free time to pace the floors..now we actually interact with a miracle.
Thank you all so much!

Saturday, August 29, 2009 8:32 PM CDT

Nothing can top the last 24 hours when it comes to info on Tim, because in 24 hours the amazing strides this child has made just floor me.
Today he has spent a LOT of it sleeping off the effects of the past 3 weeks, and he is opening his eyes and conversing more each time he does. He says little silly things such as apple juice...and he hates apple juice. SO I said to him "you dont like it" and he replied "I know"....ok then I have to wonder if he has random thoughts. He still laughs at the butterflys on the ceiling tiles, and we realized today he is having hallucinations when he laughs at them. little doses of meds and he doesnt laugh anymore...
To stop now and back track over the past few weeks is probably a good thing. If I can go back to the start of July it would make even more sense. I knew back in start of july that things with tim were coming to a head. I was burned out from the stress of managing his care and knowing major things needed to change. Tims brain was confused and he was in serious need of help. Nothing we did helped, nothing the Drs did seemed to help and I had to get kids away from the house in order to survive the month. So I took Reilly and left. Lianna spent some time with friends. Josh left too. That meant kris and Tim were home...with a friend of ours from NJ. Tim struggled, Lianna and he went to VBS at church, Rod struggled. When I was gone I was with friends. I had to regroup my mind, re focus on what needed to be done, but I needed to heal. I had reached my end, and in order for me to heal, and to look at things from a new perspective I needed to take time out. It was strongly suggested by many who know me, and by several Drs. I am Tims main care person and besides help coming and going, I was the only one he was responding to when stress hit. So I left. it took me DAYS to find myself in the midst of all the stress, and when I asked a good friend what I should do and how do they do it with such grace...she said Pray. She kept me focused with daily in depth talks and praying. She kept me glued, she was my sister...then I had a woman who who was Reillys buddy, and I could see the love she had for him, and it was rubbing off on me. She became my luv. She hugged me and held me, allowed me to just sit, didnt push me to talk, but instead just listened. She became someone whom I luv very much. I miss her terribly. My homeschool friends were right there praying the whole way...
When I got home, I have to say I was renwed and ready to fight the battle that lies ahead....not expecting that battle to be near death. When Tim got sick, I was his champion staying up all night talking him through the painand monitoring his numbers. His nurse did that same thing the next night as I was sleeping gaining my strength back. God bless her!! When the decision came that we just had to go in because things nose dived so fast, it was made with the new renewed me...I was ready for it. I was not ready for him to die. When he coded I had found myself rethinking why I left...I felt guilty for being away for 2 weeks of his final days...then in one moment some really strange things were happening. That night I left the hospital knowing things were very bad. I didnt cry anymore that night...until late. I was numb. yet I kept having images of tim with O2 loving his friends at disney, in a wheelchair but smiling...I knew it probably wouldnt happen that way, but I saw it. I focused on it. The next day came after little to no sleep. once again it was a rough day tears fell very easy that day...and at night when I left feeling like things were a little better, I got a call that indeed they just turned for the worse. Liz was with me..she said lets turn around and go back if you want... it was raining a soft rain, almost soothing rain....I cried out to God that I was a mom of 5 kids not 4 and no way could He or would He take one away now...that it was not the right time. I said how I lied to God and said I didnt mean it when I said to take away the disease in his brain one way or the other..I said I changed my mind! When I said I do not believe for one second we will be planning a funeral, that this was some sort of test....the rain stopped...it was eerie. it was raining steady then stopped as soon as I said I was being tested. and for me it was confirmation that I just passes step one of some test being put to me. my tears stopped and I felt like the rain really was heaven crying out...I believe that.
as time wore on, I had moments where I knew tim was going to be fine even when Drs shrugged shoulders or rolled eyes...I knew in my heart he would be here with us. But when I would say something they would assume I was in denial. to the point where I believed I was...it was tough.
at day 16 it was to the point where I could not hold back anymore. We have been shot down by people who hate hearing the truth unless the truth is happy and makes them feel good...and then we have people who dont know how to handle the info as it bothers them too much...its hard to write stuff on here for 16 days and sound happy when your child is fighting for his life and you cant interact or get feedback from them. We both tried to figure out how to update, and we both just went with our hearts. That night I cried out one more time, and I said "you wanted me to watch and be patient, I have been working on that. You wanted me to be honest and share, I have been working on that...isnt there anyway we can just have another miracle" then I felt guilty asking for "just another" miracle...the miracle he was still here was a HUGE miracle and yet one more didnt seem so hard. You all saw the miracle on here last night...goodnight mom were the sweetest words.
Now looking back today has been special. I talked with my "special mom" that I got to spend time with in July. She has been on the phone with me for hours at a time, comforting and supportive. She calls me baby...she may not be here hugging me but when the calls end and I hear goodbye baby, I feel the hug. I feel the love. God provided that back in July because I was going to need to remember the love NOW. God renewed my energy and strength in July cuz I needed it now. If it hadnt been for that break, I would have been broken now. I would not have been strong enough. God put into place all the things I needed over the past few months, so that I could face this now. Even Tim has people in place to help him face this now. When I say things about the people in our life now, I am serious about how the framework has been put up and those people are there and we can lean on them. The framework has been built over time and because it has been built like that, it is stronger and we dont get crushed under a faulty wall. The church we have right now has been praying for us and emotionally very supportive. When tim crashed our pastor was in the room, I vaguely remember things from the past few weeks, but I remember him there at the moment things went bad. The youth pastor was at our house when Tim was starting his final hours at home. People have emailed prayers and support. Cards have come in, and just the outpouring of love has shown me that God truly has it in control...even if I am hoping to rush it...work has been an issue because of needing to be here through the past few weeks, but how do you walk away from the child when you just cant be sure if he will be there later. how do you concentrate. yet God gave chances for work to be done here and running back and forth to get hours in every now and then. THANK GOD for cell phones and conference calls.
Like I have said many times before...hindsight is 20/20...and I can look back and see how God just intertwined every detail to be handled by someone else, and the people He wanted for us was put in to the perfect location so we could be here and be strong with people behind us. I know the road ahead is long and hard, I realize I will have sleepless nights and hard days. Nothing can be harder than having the raw emotions of past 3 weeks. I am glad they can be resolved now in some ways. I know that the Drs have said once the life is back to normal we will realize the enormity of it and we will need medication before we collapse and fall apart. I am actually looking forward to falling apart...it will most likely be when I see the one person who was a gift given to me. when I am alone and no one to have to be brave for...thats when I will let go, and probably just make myself sick. I have a "disney mom" who is far enough away for those late night calls for me, but for her she is a couple hours delayed so it works for me at night!!! She was a huge support as well, and just to vent or talk shop, really helped. Hearing a funny story or something that she was huffing and puffing over (like building closets in kids rooms and finding interesting objects while doing it) those things were normal life and I needed to hear someone was having that.
My friend Liz came from out of state to move in and take over when I could not keep things moving forward. She was my partner a couple nights. She crawled into bed w me and Reilly...first I was like "huh?" and she gave me no choice...she just made it clear if something was going to happen she was going to be right there and help....a little close for my comfort level but she helped me to rest that night. I was terrified when she left for home, because Iw asnt sure when they all left, if I could handle it. I was scared! Thats when I realized all of the amazing things God had done in July in preparing me to see that I am weak, but I am stronger when I focus on Gods promise of being there in the middle. It is hard to focus on things when you are in them...much easier when you are coming out.
Did we fail? no. we had a battle to fight. Tim had one too...still does. We did not fail as much as we learned what we need to do daily...
Thank you friends for being there, and showing unity in prayers and love...thank you my mommas for cradling from a distance and allowing yourselves to be loved and love back. Thank you to the most amazing church on the planet. God is working mightily in that place and I am excited to see the growth taking place there...and to be a part of it. Thank you to the pastors for desiring to learn about the disease and not stepping back into a comfort zone.
Most of all, Thank you God for giving me the most precious miracle a mom could ever have....and our neurologist who was here today said it best..."tim has 2 birthdays now...August gave him new life...celebrate!" she also said to spoil him for a while too, but I can leave that part out!!! But my miracle has come, and so have many more...in many forms...I believe I saw tim in disney world in a vision back early on...He will be there. I believe people were placed in my path and me in theirs for a reason...they were there. And God continues to make miracles happen every day...the best one was seeing eyes open and hearing in his own voice....Goodnight Mom...
On that note, I am going to go and kiss my baby goodnight and tell him goodnight timmy...
read the words to this song, and answer the question in your heart...

***Jesus Calling***

What do you see when you look at your world today
Is it so full of clutter that you feel like you’re going insane
And you can’t fight back cause you’re just too afraid
And it seems like the clouds in your sky don’t wanna change
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice

CHORUS
When you see the rushing wind, feel the pouring rain
Hear the thunder now as the clouds roll in
You’re blinded by the lightning
Do you also hear that still, small voice saying
It’s okay you’re not alone
You may be scared to death but I won’t let you go
You may think the sky above is falling
But can you hear Jesus calling

What do you see when you look at your world today
Do you see a glimmer of hope, or has it all turned to gray
Well start by counting your blessings one by one
Oh and I’m sure right there, you’ll start to see the sun
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice

CHORUS
Because the darker the night, the brighter He can shine

Goodnight momma's!
Goodnight friends!
Goodnight church!
Goodnight all of you!!
I will update a shorter note next time! LOL...I promise..

Friday, August 28, 2009 8:22 PM CDT

I had an entire message all planned out and was going to write it, but tonight as the anxiety was hitting so intensely inside of me, my husband did the sweetest thing any human could have done...
he sent me a 17 second video of Timmy saying "goodnight mom".
Enough said.....
I have no more words....
Goodnight Tim.
I will update tomorrow when I can find my words again.

Thursday, August 27, 2009 8:31 PM CDT

LONG LONG LONG day...
yes it is true the vent is done...but even more than that is the fact that God provided the biggest miracle of all.
17 days ago there was a 2 percent chance of seeing this day....and today we are here.
Now to add to that miracle...we were told coming off was for medical reasons because he was getting sicker on the vent with a new pneumonia. So the Dr bit the bullet and took him off. He was struggling at first but finally settled into the Bipap and did well. SOOO well that he was on a concentrated blow by mask with high oxygen and doing well. He will use bipap at night or when his body gets too tired.
Been an exhausting day, stressful day, and trying hard to keep focused.
Does this mean we are out of the woods....NOPE. We still have a LONG way to go. We need to address how much O2 he will need, how we can get insurance to pay for his new wheelchair because he cannot use the scooter he has anymore due to his body weakness and inability to walk...we need to work on convincing the Dr team not to put in a new central ine until we are at least back from tims special trip. We need to ask God to allow fluids to be absorbed in his GI tract for even a short time.
At any rate it has been a long journey this far and even longer from here out. We want him home, but obviously it is not even possible for a while. So please keep him in prayer still, cant stop now.
I am so tired I cant even see straight. I am going to crash into bed now before I completely crash.
As things develope I will update. I think I have hospital duty for next couple days so I will have LOTS of time to update.

Thursday, August 27, 2009 1:04 PM CDT

Drum roll please....
Tim has been extubated as of 1:20 this afternoon.
He was put immediately on to external non invasive ventilation and will need that on for 24 hours per day for a while. He sounds horrible and the congestion reminds me of when he came in that frightful day. His O2 on his own is still in the high 70's, but with the o2 on him he is getting it up to 95. So it looks like he will be needing oxygen for a while but he definitely is looking as if he can do this....
I will update later on, I just wanted everyone to know the good news as it happened.

Wednesday, August 26, 2009 1:22 PM CDT

I am only updating because I know if I dont I will get a ton of emails, text messages or calls...
I am really not handling things very well today. So many hopes and wishes, plus more hopes and let downs. I cant handle many more ups and downs. I finally fell apart. I am not doing a whole lot better right now, but more composed.
We were going to attempt the extubation today but there was no way. They are hoping he wont fail a BiPap trial, but today he would have. He is in desperate need of suctioning out his lungs, and that is what is holding us back. plus his xray showed that his lung had collapsed again, and it was just starting to come back with the vent.
How many more times? How much more can we take? How much more can his body manage? I know that once I write this out, I will pick myself up by the bootstraps and push ahead stronger, but honestly I am tired of even that. This is the part where I would love to run as far away as possible and forget it all....but I cant. This is part where God and I have long conversations about what I am looking at and then gather some strength from that...but it is also the part when I feel horrible and guilty for not trusting that this will be ok.
This is one of those times when someone asks "how r u?" and we are expected to say "ok" because lets face it, in New England, and with some people we have to say that. Because if we say the truth "we are not doing well because our kid has been on life support now for 17 days and there is nothing more we can do but wait and we still do not know if he will be at all like the child we had, and we have no idea if he will ever walk again or breathe on his own again!"...if we say this, people will not respond or know how to respond. It is not acceptable to answer the truth. If we do, we either do not trust God, or people will feel guilty because they dont know how to answer us....but in fact both Rod and I would just like to hide. There is nothing more we can do, no more hurt we could feel, and no more patience to conjour up. We are wiped out emotionally and physically....yet trying to keep life going for 4 kids at home who are equally as emotionally and physically wiped out. Trying to normalize the very abnormal.
We havent given up, we just have tried very hard for a very long period of time to fight for Tim, with Tim, and for the others, that we are just empty. We are not angry with God, nor do we not trust Him. We are just trying to live and trust and hold on, but it has been so hard. Keep holding the family in prayer because we are so very weak and tired right now. often times when we get to this point we know we are close to the end of the journey. And we do see lights coming...just todays dissappointments have been hard. Each day we do this is hard....I cannot even imagine how much harder it would be with out faith, even if ours isnt as perfect as it should be....
this is as raw as it gets for me....someone asked me if I ever get scared or upset....nah..not me....I just laugh it off...but for a brief few moments today, I just lost it...

Tuesday, August 25, 2009 12:19 AM CDT

ok, well today was not what was planned...we are a few steps behind...actually quite a few steps. No extubations today. we will attempt tomorrow...
his new pneumonia is really causing trouble, and he has a lot of junk he needs to clear. Also his body is just not able to respond to basic things right now. They removed the catheter and after 8 hours tim was in a LOT of pain (mind you he is on fentanyl and versed still, plus haldol and ativan for the ICU paranoia that comes with life here) and they had to replace the catheter....he was full of 1050 cc of urine. Poor kid had to go and could not! and he was unconcious!!!
so that is life today. Lots of baby steps and help. Tomorrow we try again.
I was counting hours a few weeks ago, now I am counting days...day 16 intubated. Never knew anyone of us could handle this..never in a million years.
The sickest part of this whole thing is I have never trusted a group of Drs as much as I trusted this team the entire time. Never doubted them at all. Maybe a nurse practicioner or two irritated the snot out of us, because of dumb statements, but these Drs have been wonderful and upfront with us all along.
Like I said, just being in the room with tim has brought people to realize what a miracle this has been this far. So maybe just maybe someone will be touched through all of this.
Now...if I could just motivate him to get better.
will update later

Tuesday, August 25, 2009 12:19 AM CDT

ok, well today was not what was planned...we are a few steps behind...actually quite a few steps. No extubations today. we will attempt tomorrow...
his new pneumonia is really causing trouble, and he has a lot of junk he needs to clear. Also his body is just not able to respond to basic things right now. They removed the catheter and after 8 hours tim was in a LOT of pain (mind you he is on fentanyl and versed still, plus haldol and ativan for the ICU paranoia that comes with life here) and they had to replace the catheter....he was full of 1050 cc of urine. Poor kid had to go and could not! and he was unconcious!!!
so that is life today. Lots of baby steps and help. Tomorrow we try again.
I was counting hours a few weeks ago, now I am counting days...day 16 intubated. Never knew anyone of us could handle this..never in a million years.
The sickest part of this whole thing is I have never trusted a group of Drs as much as I trusted this team the entire time. Never doubted them at all. Maybe a nurse practicioner or two irritated the snot out of us, because of dumb statements, but these Drs have been wonderful and upfront with us all along.
Like I said, just being in the room with tim has brought people to realize what a miracle this has been this far. So maybe just maybe someone will be touched through all of this.
Now...if I could just motivate him to get better.
will update later

Monday, August 24, 2009 1:36 PM CDT

UPDATE:
Tim just had to get transfused AGAIN..and also had a chest xray done that has shown significant worsening of his pneumonia. I asked what the deal was and the new attending is alot more agressive than the other one but I luv this guy said, that tim is showing signs of inflamation and infection again. SO I asked (because I am an obnoxious medical pain in the butt) if this is because he cant move on the bed and lays on his back all day. I was told it could be and that it looks like his lung is collapsing a bit, but they are on it! Now the other news is his metabolic labs are almost back in the range he normally has them in, so it means he is rebounding in other ways. So the plan is this...this guy listened to my requests and he said they are going to work on it because he agrees with me that tim seems to be comfortable on the vent and not working hard to get off so he is going to do a trial tomorrow with numbers, and if he is at least able to hold those numbers for a while they will talk about extubating on wednesday to 24 hour BIPAP. If he fails with Bipap, then we will go back to vent, and discuss how to add the trach in. But I think if he goes to bipap and has the chance to sit up and get the junk up move in the bed and move the fluids around, we will see improvement faster than laying still. He said it was a reasonable plan and he will seriously consider it.
so that is about all of the update I have for anyone....I will update later if things change again. Hopefully our need for blood is over!




Monday, August 24, 2009 9:54 AM CDT


ok, my update got eaten last night evidently....
Lots of people keep asking for updates and at this point it is really hard to give them because just like in the beginning changes are happening fast but yet there is nothing moving forward.
We seem to have positive changes followed by set backs. SOme say it is life in ICU, and others say he is tired...
either way nothing is all that new except he doesnt have a temp today..vent settings are back on higher, and he just sleeps most of the day away from sedation or exhaustion.
He opens his eyes and squeezes a hand briefly but that is about all. Maybe totaling an hour per day, but it takes stimuli to wake him up.
We have had some very interesting conversations with Drs and nurses tho, and seems they like us. lol...like I mean they really like us. Weird. Not that we are not likeable, but they have commented on the pleasure to be working side by side with us and other staff has said the same thing. I guess I should pray more for the people they generally hang out with and work with.
I thought instead of focusing on updates medically I should tell people what goes on in Tims room each day..the nurses have some funky personalities. Tim definitely has favorites and when he is awake he interacts with them differently. Some he will jump if he hears the voice, others he looks around to follow. some he reaches for their hand. One day last week it was funny, he was alert a tiny bit. Eyes were closed but he was shaking his head slowly yes or no. The music was on and Carline his nurse, was dancing around the room checking his machines and vent, plus talking to him and singing. He was fine until Bob Dylan came on. She began singing again and he shook his head NO...evidently Tim does not like bob dylan and she had to change the channel. She went over to him and said "go back to sleep! I liked that song" but he got his way and it was changed...its moments like those we know tim is in there probably frustrated just like us.
I know that some people dont want to hear this, but I have to say it...if you see the things this boy has been through over the past 6 mos, and definitely over the past 3 weeks, you cannot deny that Gods hands are not in control. The Drs even said they had little if anything that they did. They know that miracles occured. Which leads me to know that he will be home with us, the lingering question is when?! and how?! and neither of them should really matter. but I am a mom and they do.
More painful than seeing tim lay there with no real movement or awareness, is seeing the kids at home hurting.
Josh is a nervous wreck with pacing and bouncing, having tummy trouble with pain, and definitely stressed beyond the max. Kris is angry at times, and very uptight, bordering on extremely stressed. trying to get him out as often as I ca with limited resources. Lianna is crawling inside her skin with worry. SHe is not sleeping well or feeling well because of the anxiety. She keeps asking me if tim is awake yet and wants to know this isnt fast like all the other times tim is sick. she is the mommy one and she really senses lots of loss right now. Reilly is hanging on by a thread. He misses me, and daddy, plus his playmate tim. He cant understand why he cant come up and just wake him up. We have seen nasty regressions then they go away only to come back. He had made such amazing progress now it is fading away. So at home things are status quo but they are starting to unravel. Kids need the whole unit together.
I am falling into a pattern that I do not like. Walking is good, but the not eating is wearing on me, yet I am really not able to. still hurts and I get nauseas. Headaches are like a cycle now...once it goes it starts again. not fun. waiting for answers to only here "no change" is getting old. wanting for God to miraculously wake tim up and just have us go home as if it was a bump in the road, would be wonderful, but I have to believe there is a greater reason for this and as long as I think like this I can settle my mind right down again.
so all of the emails I get are about how is tim, and can you share disney info...
ok...
talked about tim, now disney.
you people are funny! I thought I was the only fanatic, but evidently there are a ton of you out thre.
Disney will happen. we have our dates even. we have round the clock nursing. we have specialized chair coming for tim. and there are so many amazing people inside disney and outside disney, as well as Drs that are making this happen. Its been like a well oiled machine.
Everyone wants to know what ride it is tim wants to go on. Well it is Dinosaur. I hate the ride because it gives me whiplash!!! But it is not scary to me. I just hate the jostling around. He loves it, he loves the dino's and he thinks it is funny when adults get off and cant move for an hour. last time I boycotted it, so the joke was I would do it only if it was someones dying wish...and tim was not doing well, actually dying, and he said I wanna go see Kimmie and Elton, go on dinosaur...so I cant go back on my word. I will pre medicate! and only ONCE.
all we need to do as a family is show up, the rest has been done. The well oiled machine is up and running down there complete with food! lol...like any one of us really will eat anyway. Been so long since we have eaten together that no one will even remember probably.
so that is the disney news.
Other questions and comments have been about rod and I...we are trying very hard to be here with the drs during every change or concern. We have been involved heavily with every single aspect of care and it has helped with so many things. Rod has been trying hard to work remotely and go back and forth to the office, even going there on saturday when things were quiet here. I am able to stay here a little bit too. I am doing some work via computer and still have one document that I have yet to complete but getting there...I will be done very soon. Then I am done!!!
We keep getting asked what we need. We dont have answers for that. If anyone has any ideas or just offers something we will not argue or deny! honestly I dont even know what we have at home for food...I do know we have toilet paper and laundry detergent, but beyond that I have no clue. So if you ask what I need..I am not lying when I say I do not know. I need to do inventory. lol.
As most of you who know me, know that I am the one to find humor in everything. None of this has been humorous but I will be honest and say we have found moments of laughter. Tim snorted with a tube in his throat and we cracked up for about 5 minutes. Even the dr giggled a bit...sorry but it was funny....one time I said "tim if you can hear me squeeze and let me know"...he squeezed! but it wasnt his hand!!!!!! and I said "gee thanks for that, nice to know you still love me" and we left the room...so as you can see there are moment when it isnt all sadness. We talk to him about his friends, God, people praying, read the notes, and also about his trip. We are all blessed to have amazing friends all over the country. You have all been so uplifting with notes, and calls. Even my stalker in Kentucky! LOL...goofy megan! you are not a stalker. If it wasnt for friendship we would be lost.
I will update when more medical news become evident..
thank you!

Sunday, August 23, 2009 8:52 AM CDT

I dont have a ton of time to update but things have gone a little bad. Tim now has a 103 temp, C Diff, and his gut has totally shut down again. No one knows why the high temp..no one can use the tummy anymore and we are now questioning the PICC as a source of possible infection too....They are doing xrays to see if there is a blockage in intestines stopping things, or if it is just air buildup. He looks about 9 mos pregnant. They need to do a CT scan when he stabilizes again because he just lost the stable word on his dx, and we need to check for infection/fluid around his lungs. He has had this ongoing but now the concern is does it have fungus in it and not being treated, or is it simply fluid that should be drained to give him support.
He is not able to generate enough force behind the breathes to even talk about extubating. This discussion has been taking off the table for a few more days now.
I told the Dr just a few minutes ago...."you told us not to worry and to make plans for tim in florida...you do realize those are made" and he said yup and not to worry....so I dont know, I still think he is a crazy man, but he is really good....so....
until we know more info, this is all I have..

Saturday, August 22, 2009 4:11 PM CDT

we just got hit with some news a little bit ago....Tim now has a NEW INFECTION.....ugh!
so now we are dealing with C Diff....this just really sets things back a bit.
We are in the process of coming down off of sedation meds and pain meds because of the whole too asleep thing, and the fact he is unable to make progress on the vent setting because his is too asleep. He was supposed to be weaned down slowly but steady this evening to try and get him to a good point so we can get this vent out and onto oxygen and external ventilation. But this may set us back even further.
this is just another hurdle this boy has to jump and I know if I ask people to pray they will..so can we please pray that this doesnt disrupt the vent issues, and also it clears fast.
Thank you. I will update later when I get more info. I get hospital duty tonight, so I am going to be living on the PC when I can....nothing else to do but looking at him in bed not doing anything!



Friday, August 21, 2009 7:21 PM CDT

So badly I just want to update that things have changed miraculously...that was last week. This week it has been a good week but we have hit a plateau. It is better than failing, and better than no hope....but this has to be one of the loneliest places to be.
Dont get me wrong...tim is in a healthier spot medically but he is just not waking up. They have turned down sedations and pain meds and they expected him to have woken up a lot more by thursday, but he just is not waking up much at all. He comes to about a total of an hour a day. The trial of lowering the vent has not been successful the couple of times they tried. They did manage to bring his PEEP down one more level, but he keeps requiring a "rate" of breaths. When they let him breath on his own, he requires a boost of significant amount. He just isnt able to make good breaths, enough to keep him off the vent. So until that moment occurs, he is still vent dependant. It is so hard to be close enough to see the end of the road, but almost like we have run out of gas waiting for a tow....
They are expecting at this rate, we may be ready for extubation by late next week....
patience...I am learning it, but dont think I will ever master it.
sorry for not being able to post great news, but like I said, this is a stalled system now....

Friday, August 21, 2009 7:21 PM CDT

So badly I just want to update that things have changed miraculously...that was last week. This week it has been a good week but we have hit a plateau. It is better than failing, and better than no hope....but this has to be one of the loneliest places to be.
Dont get me wrong...tim is in a healthier spot medically but he is just not waking up. They have turned down sedations and pain meds and they expected him to have woken up a lot more by thursday, but he just is not waking up much at all. He comes to about a total of an hour a day. The trial of lowering the vent has not been successful the couple of times they tried. They did manage to bring his PEEP down one more level, but he keeps requiring a "rate" of breaths. When they let him breath on his own, he requires a boost of significant amount. He just isnt able to make good breaths, enough to keep him off the vent. So until that moment occurs, he is still vent dependant. It is so hard to be close enough to see the end of the road, but almost like we have run out of gas waiting for a tow....
They are expecting at this rate, we may be ready for extubation by late next week....
patience...I am learning it, but dont think I will ever master it.
sorry for not being able to post great news, but like I said, this is a stalled system now....

Thursday, August 20, 2009 2:33 PM CDT

Things have not moved anywhere since yesterday and it is so disheartening right now. Was hoping for positive changes.
The D is saying that we can try to wean more tomorrow with the hopes of having his extubated by monday. 2 solid weeks on life support. o what a goal to have had. It is on so many levels, very angering, very frustrating, very sad and sobering...but also a time to look at how far we have come. I cannot believe for one minute that God did not save his life, and if I hold to that belief, that God does have plans for this boy. I have to believe this and I do...so therefore I just sit back nd in amazement realize how much more I can handle, realize how much stronger tim is than I ever gave him credit for, and just how much it means to have faith...now if I could only work on the patience level I have we would be good. I am sitting next to tim and saying "hey can you spee this up, thi is taking too long...dont u want a cheeseburger or something?" but no reaction....He does love his nurse carline. He opens his eyes and shakes his head no when she tells him she needs to move him. So when she does do it, regardless of the head shake, he slips his hand behind her and taps her back, enough to say "hello, leave me alone". She is funny cuz she sas "hey pal, another inch lower and I will have to slap you" ...no reaction tho...
we are getting a PICC placed right now and I am very angry with that. I did not want to do that. I made a huge stink, and made them ask everyone involved if it was truly needed and well....I lost....but I fought!
I have heard slow and steady wins the race enough this week, and I understand but cmon....enough! I am thinking tomorrow tim and I need to have a heart to heart and get this show moving now.
So just to update the systems again...
fluid is almost off of him
BP is much better with his home med on board
still on ventilator
tolerating minimal feeds for a short time through tube
liver enzymes normal
no blood products for 4 days
temps almost normal, but no spikes in 48 hours
ammonia leves almost normal now
on heavy sedation still, but weaning as tolerated.
we are on day 10 of life support and in 10 days we have accomplished a ton. I cannot ever say thank you tothe people who have prayed and called or emailed. Evn if I cant respond right now, I will eventually! I just want you to all know we are touched by the friends around us.

now to answer the most commonly asked question....Disney...lol to even think of this right now is really not even funny. but so many of you are worried about the fact we may not be able to make the plans or worse, that tim will not be able to do this again.
The Drs here have helped us make arrangements with agencies and supports. I cant divuldge information because people behind the scenes are making sure this happens and it would not be fair to blow their cover.
Disney is being arranged by some people both in Disney related areas and close to us. No we do not need any help getting there as that is being arranged as well. Do we need anything to help us once there, no. We have people making that arrangement too. The only thing that we are waiting for is Tim to wake up and tell us when he is ready. When we do go, there will be photos and smiles posted. My momma will be needing to help with one aspect but thats her job not mine! LOL beyond that, Drs are having more fun talkng about what will be happening than they are about most anything else...one Dr even said when this is all said and done I owe her a small perk.....in other words call in a favor or two! ugh....whatever....if she can mamke this happen, I will do anything in return!
I will update later on with new info if it comes to fruition.

Wednesday, August 19, 2009 6:16 PM CDT

what a freaking long day.....and I am so dang tired it is not even funny....
stood in one spot for almost 5 hours while we had to deal with tim in a very disturbing and frightening way.
This morning we were told they were going to try to wean off the vent and go to +pressure noninvasive vent, however tim quickly failed the trial of being on only assisted breaths, so back up we went....it was sad because his numbers were as low as when we came in which made me relive last week all over again.
I left the hospital after the vent was back on, for about 3 hours. The things that happened tp us while we were gone is a story in and of itself and it does not have a happy ending, sorta...long story!!!!!!!
When we got back after taking time out to be "normal" we came back to tim fighting with the nurses, and being very upset/scared, obviously in distress...mouthing the words mommy...so I held his hand and he was hurting me...when about 2 hours went by the nurse noticed his central line in his neck was leaking...great line broke! so the poor kid was getting no pain meds or sedation meds!!!!! so that was resolved and he got a new IV in and the meds were bolused. He is resting a bit more now and Rod and I are trashed. We are heading home for the night because neither of us wants to be here and watch this ever again...the hope to extubate quickly ended and it will be a while before we can attempt it again. Just goes to show us how fragile he really is....
When I said to tim, "honey you have to rest, you have to sleep and not fight the tube...you need to do your best" he was shaking his head NO....when I said "If you want to go to florida and get away from all the Drs and the hospital you need to do this" he shook his head yes! SO he is aware....
He is terrified, please keep him in prayer tonight.
Rod and I are wiped, please pray for renewed energy.
Reilly is having a struggle with things changing right now, so please pray for him too...
thank you all...will update through the night if things change.

Wednesday, August 19, 2009 9:12 AM CDT

Did a update earlier so look in history pls. Updating on a cell phone bites!
We have had a set back and will b updating as day moves on. Pls pray for tim.

Wednesday, August 19, 2009 3:52 AM CDT

ok yesterday was exciting because tim was aware of what was going on around him for just brief seconds, and then would get so anxious and upset they had to put him back out. but it was the squeezing of the hand that gave me hope and a chill.
Now all night I was in and out of anxious, fear, joy, aniticipation....you name it I felt it. I am not sure "what Tim" is coming back to us. What damage has been done. Everyone has agreed it probably wont be the same, but we just dont know and that is the new fear hanging over our heads.
updating on medical things...
still has a fever and it is getting the drs frustrated to not know why he still does. Cultures are neg right now and labs look better infection wise. Autonomic? we just cant be sure. Impressive fevers tho, not just mild. His ammonias remain very high still. they had settled in lower but still high, and now they are back higher again. They are working on feeding his tummy 10cc an hour to see if they can bind it that way too.
He still is positive 4 liters of fluid and looks a little puffy but nothing like he was when he was a good 9-10 liters positive. So that has improved, but needs to still come off.
they are saying now the real work begins trying to sort all of the stuff out. How will we live our life from here on out and with what meds on board...what changes, what stays the same, and what gets better....all unknowns for everyone.
Today we get a small snapshot into who tim is cognitively and scared to death to find out. I am praying God allows innocence to take over, and even if the cognitive decline is huge, that he wont even realize it.
So many of you are calling or emailing, I honestly am trying my best as is Rod to return calls or email people back. Actually had a relative mad because I was updating that person hourly....seriously, we are barely able to function hourly! we can sit and talk to visitors, but PC use or telephone use is hard. My commutes to boston are becoming intense because I have to repeat the same story over and hour to as many people as I can return calls to. By the time I am in boston I am wiped out from stress, or back home equally as tired....I promise as much as we can we are updating.
So as I said today is a day of questions and hopefully answers or at least ideas of answers. today we need people to continue to pray for healing of this nasty yeast/fungus. Today I am hoping innocence shines in his room...and hopefully I will get another hand squeeze.
Now is when we need everyone the most!!!! dont walk away now! come by and visit if you can, and leave a note for tim.
I will update as the day goes on....

Tuesday, August 18, 2009 3:44 PM CDT

wow, what a day....
his vent settings are down enough that he actually woke up! he was not a happy camper and was quickly given meds to go back to sleep!!! He was fighting it a lot and was very aggitated. He is still in pain and running fevers but thtey are feeling pretty good about the infection clearing up now.
I will update more later, I just need to pack up my PC now.
But Praising God the Father that so much healing has gone on and the Drs even said it had nothing to do with him...I even asked Tim "so...have you seen any angels?" and he squeezed my hand...I am sure he has no idea what he did or what I said, but it was impressive nonetheless.
and if he did....well then that is a story we will all be hearing about for a long time.
Drs are more than optimistic at this time for him to be going home!!!!! the bigger problems now are high ammonia still, ongoing fevers, extubation at some point, muscle breakdown and continuing muscle breakdown, an unhappy liver, and neurological. His MRI showed changes but the idea is what will be left with is really not known yet.
I will update more later, I promise...

Monday, August 17, 2009 2:35 PM CDT

This is the first time today I have had a minute to write.
He had an MRI today, and a lumbar puncture. They did this because of how he presented when he was really sick at first. The question was if he had yeast in the fluid around his brain and we will know this tomorrow. MRI had no huge stroke evidence and now we are waiting on final read but it looked safe. The biggest concern about the brain is how he is going to wake up. Will he be Timmy or a different Timmy. Part of me is just hoping for innocence because of all he has been through, but I am hoping we get back the boy he was. Not the problems, but the joy and smile.
so let me go system by system at this moment....
brain...we dont know yet what damage has been done but they expect damage given how he was acting...just not sure how much. Lack of O2 and high ammonia can do a lot to a good brain.
lungs...on ventilator still, in a medical coma however he was not responding when they took down meds except his BP and HR went way too high so they put them on when they could not get eye responses...they dont want him to hurt. He is breathing over the vent settings now that they are lower, and he is doing ok with that. They are not ready to shut it off, but they want him to build strength now. supposedly another week on vent. I am not excited about that, but I will take it! GLADLY. pneumonia is improving and sats are stable. His vent settings are still high and his O2 settings are fairly high still...so we see progress and good things but we have a long way to go.
muscles...he has a LONG LONG rehab awaiting him. We know it will be a long time before he can be doing the things he was doing 2 weeks ago. but it is the last thing on our mind and we will be glad to just see him home and rehab'ing with us!!!
blood...no need for blood products at all in past 24 hours, so we have turned that corner!!!!! yay...things seem low but very stable, and almost back to his low baseline.

fluids/retention...still needs to get about 25 pounds of fluid off of him, but it is way better than over 50 pounds he had. He looks better and it will be coming off slowly.

ammonia...levels are still high and they cant get them lower no matter what they try. We need to keep working on this. now they are hanging out at 135 and havent moved for 48 hours. despite meds.

I think that is about all...I will tell you I spoke to the Dr a bit ago and he said that no one in the ICU thought Tim was going to live. He said they held on to hope and fought because we had so many people there and praying. He said they knew he could fight because of the support around him. He also said that once you fall that far with this kind of infection and have the numbers he had, that he should have not made it no matter how much support they gave. He honestly said "it was nothing that we did that saved his life, we just supported, Tim did this, prayers did this, and love did this". Everyone is echoing that feeling here at the hospital. No one can understand why and how....so I have kindly told them how and why! LOL...if I keep it up they may ship us home faster...
We are in the room talking about Disney world, Elton and Kimmie and all about how much he loves them and they love him. I told him he is doing this because he wants to punish me on a ride I may end up in traction over! (his HR goes up with that discussion!) The nurse said he needs a pedicure so he can look good for his friends (uh, no!) and we are going to start bringing in photos of people he knows so we can help him remember. I think I am finally in my planning stages!! so the next calls I make are to my "momma" and have her help me figure out some things! LOL...
Thank you all for the prayers, we never would be here right this minute if it wasnt for the vigils that took place all over the country. There is still so much work to do, but we at least see the light now, instead of dark fears....
I will update later with more details as they change.

Sunday, August 16, 2009 8:33 AM CDT

6:50 PM update...
Ok, this is a mommy thing....I was watching tim and realized something didnt look right..of course the tubes, vent, 15 bags of fluids/meds/tpn/drugs, and machinery is not right to begin with, but this is more....so I watched him for a bit and I looked at the monitor....Tim breathed 1 BREATH ON HIS OWN! I saw the breath a few times in about 5 minutes....no lie, he is set on 16 breaths per minute, and he was doing 17....so cool....
told u all it doesnt take much to excite me....just had to share...


5:49 PM UPDATE
ok blip corrected for now. BP is back down to a more normal range. Not perfectly normal but better.
Vent settings are down just a slight bit more, but he is not awake at all, not even responding to voices today. Fluids seem to be lessening, although I almost have tunnel vision now looking so closely at every last inch of him. I think he looks better, but it could be denial or wishful thinking. Dr Bozo hasnt been around all afternoon and even the nurses said his comment was so stupid! should have at least waited until he was awake and off vent before telling us the odds like he did. We knew it was bad when they say 2 percent, but he didnt even say it kindly.
need people to pray for Kris as he is taking this very hard and has basically begun to take it out on me as hatred. So hoping that some good prayers his way will help. Either that or if anyone has a spare room for a month...or 12, just let me know!
I will update later...(I am doing much better updating today huh?)





1:30 PM UPDATE
Tim has a major blip going on right now. He has a Blood Pressure of 188/110 and they cant get it down with conventional meds...
I was doing just fine and handling the baby steps....but then Dr Bozo/Dork/momo or whatever he is decided to tell Rod and I that "you are lucky, cuz the kids and adults he sees with this infection just die."....ahh, ya, thank you so very much! nice support...bonehead! So now I am nervous with the blood pressure blip...so please pray for this to settle in and respond to treatment.




Sunday, August 16, 2009 8:33 AM CDT

Ok dont get to used to the fact I am updating in the morning hours. It looks like there will be many updates today and I am trying to keep up with them.
We are trying to update as we get info and the past few days it was so status quo that it was getting very emotional and very difficult to update when nothing was new.
Today has started off with a new chg. His vent settings are down a tiny bit more over night and we are hoping that by end of day it will be down even more. We have been told this is the hardest period for the parents b ecause WE want to see progress in the form of him responding to US and THEY want to see progress in him responding to the MACHINE. so....we are both sort of getting our wish. I am excited with any response to the machine at all. I know enough about them that I can get thrilled with a blip!
It has been over a week of him very sick, and its hard to look back and think how far we have come, yet how far we have to go.
I finally slept a whole night (ok seriously it was 5 hours with 7 hours in bed...but better than the usual 2)
Food settles just a little better now, and fluids have kept me going.
nerves are still pretty shot and yes tears do come extremely easy still...
Once this is phase over I know we will physically and emotionally crash.
I was asked if we have any current photos of tim in this condition and I do want to say yes I do. We have been taking them daily as we were told it would help us grieve the process, but also give glimmers of chg and hope. AND it will help Tim piece together what took place. So if any one does want a copy, I will send it, but I am not going to post it on here right now....
We have been asked numerous times on the phone about things we need...we have our basics covered right now, but truly entertaining the kids is going to be priority number 1 at home. Kris needs to get out and do things, and we cant do that right now. Reilly and Lianna dont need to be housebound or out all the time, but even puzzle building or coloring with them would be huge. SO if anyone has free time and wants to pop in while we have some people there keeping the house going, it would be wonderfully accepted.
Right now we have this week covered for child care, but beyond this week could be very tough, certainly will be tough with housework too. Normally we have nursing hours to free me up but those are on hold while he is in the hospital and the other kids hours do not cover much. So please pray about that.
So todays goals...
1. get fluid off tims body
2. continue to reduce vent as tolerated
3. better Xray
4. better ammonia
5. continuing to see that light at the end of the tunnel for US.

Thank you all for the prayers and comforting words. This is going to be a very long very difficult hospital stay but it certainly helps. Dr Webster and Dr D'Ambrosio are working hard to make a disney trip happen! LOL...I cannot believe they are doing this, but they are. We are telling tim he has to improve because they are spending lots of time doing this....
ok, I will update as the day goes on and things change....
THANK YOU!!!!!!




Saturday, August 15, 2009 9:33 PM CDT

finally an update with the words the Dr said...
"I think we can finally use the words critical and stable"....oooo what a huge relief that phrase is!
I will quickly update here and fill it in tomorrow.
vent settings down a tiny smidge but down nonetheless! not even enough to make a real difference but it is progress.
O2 level on vent is at 60 percent, and his sats remain in low 90. turned his breaths down a smidge too.
his ammonia is still about 195 now, but has dropped significantly from last time so that is amazingly better and seems to be on a downward trend. His xrays have improved as well...now the biggest hurdle is getting fluids to come off of him and get all the puffiness to go away.
He is still very very ill and it could still go either way, but for right now I am holding on to the hope and the blessing that this is going the right way.
Thank you to the visits we have had. It has been really helpful to keep our minds occupied while we wait and wait for changes. Friends are the most important thing we have right now and we are really blessed.
I told Lianna and Reilly tonight what was going on and it was easier than I expected! Lianna took it well and wants to see tim, Reilly said it was not nice to tell him stories! He wants to see Tim too.
long week, and about another 2-3 months of longer weeks...
It really makes you appreciate the simple things a whole lot more, and the people you encounter too.
I am falling asleep typing....goodnight, I can finally sleep tonight!

Friday, August 14, 2009 9:41 PM CDT

I have had the page open for about 10 minutes just thinking what to write.
small small improvements. nothing that even changes anything, but they were something that didnt happen before so I will accept it as good.
there are some very specific prayer requests that we have.
tonight we need to pray strongly for his ammonia level to drop drastically. Also for his chest x ray to show some improvement. we need the both things to be done in faith by tomorrow...
we r still in critical and unstable condition. they keep reminding us of that and after time it is like "unless it is gonna change, dont tell us!"
we are at 60 percent oxygen, and highest setting of vent. he is off paralytic meds now, and BP meds, but is still on phentanyl and versed. eyes taped shut now due to corneal abrasions, and he is larger than huge! tons of fluid weight.
I cannot handle many more minutes with out seeing a response. makes me angry, sad, void, and sick. It is hard to walk by his room at home, or look at happy photos...hurts too much but also mamkes me desire to push on harder. I want my baby home...and just FYI, I dont think he is going to be in his own room for a very long time!
Im falling asleep and that in itself is a miracle....
goodnight and I will update more tomorrow

Thursday, August 13, 2009 11:25 PM CDT

central line out, waiting for cultures to come back negative so that we can put a new one in.
He did not tolerate going to the OR well at all, I will leave icky details out.
They tried to place an ND tube, and it ended up coiling back up on itself because of his reverse motility.
He continues to go between 90-100 percent o2 and vent settings, they are trying to reduce certain things and see how far they can go with that.
He is cheduled for an EEG to see brain activity tomorrow.
his ammonias are high, and he has approx 35 pounds of extra fluid on him with the hopes lasix will get some of it out. He has had at least all his blood replaced 2x now. so many platelets that he should be like glue in there, yet he is not even close to normal.

It is very hard to walk into the room and realize he cannot respond. I have begun to stop going in because it is too painful to watch this happen now. he has never not said something to me, and it is killing me not hearing his voice. touching his hand is hard as it is full of fluid and hot. So its not even his hands.
We are fine until we talk about memories then we lose it.
Rod talks to tim about family guy and football and I talk about the people he loves and Disney. I know more than anything he would want to be making plans right now, and he probably is in his head so I had better watch out! I just hope he remembers the people who love him!
I took medicine so I am very tired and I am going to try and sleep tonight....I will update more detailed info tomorrow....

Thursday, August 13, 2009 11:25 PM CDT

central line out, waiting for cultures to come back negative so that we can put a new one in.
He did not tolerate going to the OR well at all, I will leave icky details out.
They tried to place an ND tube, and it ended up coiling back up on itself because of his reverse motility.
He continues to go between 90-100 percent o2 and vent settings, they are trying to reduce certain things and see how far they can go with that.
He is cheduled for an EEG to see brain activity tomorrow.
his ammonias are high, and he has approx 35 pounds of extra fluid on him with the hopes lasix will get some of it out. He has had at least all his blood replaced 2x now. so many platelets that he should be like glue in there, yet he is not even close to normal.

It is very hard to walk into the room and realize he cannot respond. I have begun to stop going in because it is too painful to watch this happen now. he has never not said something to me, and it is killing me not hearing his voice. touching his hand is hard as it is full of fluid and hot. So its not even his hands.
We are fine until we talk about memories then we lose it.
Rod talks to tim about family guy and football and I talk about the people he loves and Disney. I know more than anything he would want to be making plans right now, and he probably is in his head so I had better watch out! I just hope he remembers the people who love him!
I took medicine so I am very tired and I am going to try and sleep tonight....I will update more detailed info tomorrow....

Wednesday, August 12, 2009 9:39 PM CDT

In some ways today was a good day, but good is so relative now anyway.
before, good was playing outside with Reilly...Now, Good is a ventilator that has kept him with us for another minute.

We started the day with life support still going, and vent settings very high....we got into the middle part of the day and his vent settings went extremely high, 100 percent oxygen, and needing extra meds....when the evening began we were able to get the vent back to the original settings and honestly that is what constituded a a good day.
we were told to expect big setbacks, we were told we will have many good days of baby steps, and literal baby steps forward....then it will be one major event that will kick us down. I cannot handle that and today was my day of handling things pretty well.

we are at 36 hours now on life support, starting to ache to hear his voice and get a hug. made my promises to God and have felt every ounce of guilt over everything we have ever done wrong with him. I have envisioned every smile and every giggle that only he can do and I am sick over the fact all I see is sleep...and its not a real sleep. Up until late today we could do no stimuli, so no touching or talking. basically all mothering was taken away.
We have no idea what tomorrow will hold, but we are hoping it is good...a relative good is ok...a plateau is ok. I just want stability. Who ever said what doesnt break or kill you will make you stronger.. I do not feel any stronger, if anything I am much weaker. 6 hours of sleep in past 5 days, what exactly is food??? drink??? no desire for any of that! I think we are numb, in shock, disconnected, rushing through the grieving process, holding on for hope, massive amounts of tears, choking to breathe...all of this is life today...
Thank you to the people who brought supper over tonight to the kids. I am off to bed now. Thank you "MOMMA" for being on the other end of the phone whenever.....
unless things change over night drastically I will update thursday.

Wednesday, August 12, 2009 11:50 AM CDT

no huge update but this is a minute by minute day. next 72 hours are critical critical.
The source of infection is fungal and at this point it is really a good thing to know, however it is the more serious of any of the infections.
He is having an Inter jugular central line placed now, and then we wait......and wait.....they expect setbacks today. So we are not going to go into a major panic, just the normal slight panic that I have been in....
tims in charge now. He needs to fight now....nothing that we as parents can do to help this or fix this and that is the worse place for any parent to be in.
we are now at 24 hours of life support and that means we are at least doing something.
I will update later today with new info.

Wednesday, August 12, 2009 1:17 AM CDT

I feel like I am repeating myself and at 2;17 am, I probably am.

readers digest version...
up down up down down down down up up down.....that has been our day..

Tim was placed on life support at approx noon tuesday. We had our pastor with us when he began to code, and also a good friend. It was really tough to watch the transition knowing it may be the last time I would ever get to see his eyes open, and maybe the last time I heard a noise out of his mouth. terrified was not even close to what the feeling was.
utter exhaustion has completely taken over now. So many things have changed so fast. No brain bleeds were detected on a CT scan they did, however he has 2 collapsed lungs and what is not collapsed in filled with fluid. He is in metabolic lactic acidosis. He is rigid and dystonic.
He has responded to sounds in the room with fluctuations, and he responded to Rod making a threat! Every single aspect of his care is micro managed and the team is possibly the most loving team I have ever encountered. We could not be in better hands. he has had more blood products in the past 24 hours than I have ever seen. He has had the vent setting adjusted a few times during the day to increase the pressures because he was too tired to help the machine. He basically is on very high vent settings.
he has over 13 things hanging off of him at this time including an arterial line.
He looks peaceful, but it is hard because he was not with us for so long before the coma, and now the coma, I am just wanting him to get up and ask for a cheeseburger. I am just so grateful to see him breathing even on a machine, I am not willing to let this be the last step. he shocked us all, the Drs are concenrned still, his is in critical condition. Please send letters and we are printing them out in a book for him, reading them to him, and being encouraged as well.
So many of you are being moms and dads to us right now and we are ever so thankful. So many people came up to be with tim today and be with us through the rollercoaster ride. Thank you all so much. Thanks to my faraway mommies Wendy and Penny....wendy sorry for the tears! sorry for your up and down day!! Anna thank you for the late night discussion. Timmy's goal is to see Elton. He wanted to see him and the last thing he said to his dad was he wanted to see Elton and kimmie. ROd asked him if we should get them here, and tim said "no, me ,there" and the Drs have said that needs to be tims focus, to encourage that and have him fight for it....unfortunately we also were told that tim may not walk for months, and most likely (99percent) that he will be trached and vented. The Drs all said it is the way it looks now, and he needs to plan this and he needs to be encourged to fight for that. Timmy loves those two people more than anything in this world, and when we mention their names his heart rate goes up...so I will do that. J and pastor John, thank you for putting up with a basket case of a mom, and being there at the perfect time when life was slipping away. Deb, o man thank you so much for being there...and the meal. You fed 3 of us! jeanie and ollie thank you too...mari I luv u infiniti plus 1! Kim thank you for taking lianna. Liz, man you are my sista mija, and without you by my side today I would not have kept it together. stormy thank you for the updates to people! laura thank you for being there for Rod. I never ever add real names to the updates, but you all have been so amazing and supportive during this.
plan of action over next 12 hours....chest tube, increase blood counts, stop the bleeds and bruising, bone marrow test, and encourage, talk and bribe if I have to. Thank you all for everything.
I am going to sleep tonight today this morning or whatever....I am done...I will update later..

Tuesday, August 11, 2009 6:02 AM CDT

I think the most annoying thing is trying to update the stupid wallpaper every time I update so people can there that there was an update! I dont have time!!! please just check the journal entry cuz I cannot guarentee that photo or wallpaer will be changed.

Update..
Over night there was a decline. A couple units of platelets later and we have only 18000. so we are getting more. His heart is enlarged. He is now wearing a diaper. He is in and out conciously. He asked me for a few things before I left, and I am working hard to scrounge them up from home to head back in. We are using Disney as a incentive to get him to talk, and focus on staying alert with us. I have a huge frame I put together with a photo of all the characters autographed, and some notes from one friend, plus a memory book with notes. I am going to use them to keep him fighting.
I told him we WILL go back and I WILL do the dreaded ride he loves, if he would just stay with me a little longer! once I get that stuff together I am going back in. If anyone wants to write a note personally to him just email it to me and I will read it to him. I will try better at posting blurbs throughout the day so I wont keep everyone worrying....cant promise, but I will try.



Monday, August 10, 2009 11:12 PM CDT

There is absolutely no way I can return about 40 phone messages or texts but I am trying I promise. IF YOU called or texted, give me a little bit of time, I promise to call you back.

No phones in ICU, although I am sneaking the cell to text as i can, or to try and ck email.

The news as of this very moment is tim is in critical condition. he has congestive heart failure, repiratory distress, kidney and liver are in big trouble, on 15 litres of high pressure oxygen with moisture to keep his o2 sats at 92, lasix, antibiotics, and honestly right now I forget whatever else...O the BIG thing, his platelet count was 4000 and he had to get blood.
His mental status is poor, he has lost a few days due to the fact he was unconcious, and barely responsive to verbal command. He weighed 174 on thursday of last week and today he weighed in at 195. He had 21 pounds of excessive fluid on him. He still has a ton of fluid on him, still in distress, still in ICU and still listed as critical.
When I say I saw Gods hand on Tim this past day I am not lying. God intervened to keep him alive at home, and on the way to the hospital, and the hospital has agreed with the things we want done or not done with tim. The Drs are working hard to keep things calm and even keeled. There is much more than mito going on....
thank you so much for all the support. It means so much to us all. Its just extremely heartwrenching right now....he is in such pain, and trying to hard to hold it together. I need to sleep, I promise I will update later. I have to be back at the hospital early, Rod has night shift hospital duty, and I am home on home duty tonight.

Monday, August 10, 2009 12:24 AM CDT

Doing this from a cell phone hoping it works.
Tim is critical and in ICU. His body is full of fluids and his lungs r full.

Monday, August 10, 2009 8:50 AM CDT

feel free to read journal history...

we have reached the final moments at home, and we are now heading to hospital. Things are not going well. His oxygen levels are in the 70's and he is just not staying with us conciously. We hope that giving him extra oxygen will help him immensely and hope that we can come back with that in place..otherwise we will be updating from ICU.

Sunday, August 9, 2009 11:03 PM CDT

Longest day of my life so far. Tim should have been in the ICU and vented but in my heart I knew he didnt want that. He wants to be home with comfort. So with that knowledge we did that. I was able to get the Dr to agree to listen to me. Right now he is very disoriented, and really confused. He makes no sense and then babbles. He is sleeping about 23 hours and just seconds of trying to talk.
His kidneys were losing their happiness big time. He was spilling protein, some ketones but his spec gravity was normal, yet it was the color of lagr.
His nurse came in as our friend not as our nurse, and has hands on helped get us through this so far today. at around 4 pm, I was realizing we need to begin planning a funeral, but I asked josh to PLEASE call the youth pastor. I knew that someone had to pray for this boy. I mean hands on pray....Derek came and was pretty shocked and could not believe his eyes...tim cannot open his eyes for long. he had almost stop going to the bathroom completely.
Once derek prayed Tim opened his eyes and said "I really need to go to the bathroom" It was the only normal thing he had said in hours, and he did go. There was a slight improvement in the color, but he went! he cannot lift his own arms or legs, needs to be carried or lifted, re positioned. he cannot move his own head to correct its position. He was retracting with each breath but his body was getting very weak. he is not even absorbing meds through his tube, we vent him and it all just comes back out. his blood counts r very low, and his platelet count is only 20,000(normal is 150,000-450,000). he has also lost more hearing.
I am falling asleep after being up for 2 days. I have a couple friends come in from NJ to be here for the other kids and me. I love you guys SO much, you just cant know. I have promised tim the world if he can just pull out of this one. So as I said, this evening I was trying to figure out how to plan a funeral, and now I am more hopefull of healing. All I ask is that you pray hard.
We have tried our best, the on call team has supported us, and now we wait on God to give a miracle. We have said that anyone who wants to talk to timmy we would put the phone up to him or on speaker phone so you can say Hi or whatever you want. He just doesnt respond much....praying that I wake up in the AM and find him playing with the remote asking for eggs...I will accept a miracle!

Sunday, August 9, 2009 2:15 PM CDT

very long night. Next 24 hours are critical. Home with Drs blessings and on a palliative care plan for now. Tim is very rough shape with extremely low blood pressures, and low oxygen levels. We have him on machines and monitors here, praying for the best as the meds try to work and clear up things. He definitely has pneumonia.
update later




Saturday, August 8, 2009 10:45 PM CDT


ok in a matter of minutes from updating the last one, tim has taken a very large turn for the worse. his O2 levels are so low and blood pressure too, that no one would ever believe it so we took photos of the machines to prove it! but he is really in bad shape....we are not sleeping tonight we are on tim watch. We are waiting for the moment in which the ambulance will be called but tim doesnt want to go in. He wants to rest. But on CPAP he is still registering a low o2. his bp is 84/35 now too... I said DAYS ago I thought he had pneumonia, and no one agreed...just a cold..! But I dont think anyone of them was right. I am so angered right now!! he cannot breathe well. He asked me tonight amidst confusion if tonight he was dying....what do you say to him?! I said I was not going to let that happen with out a huge fight. he is clearly not with us right now. we are doing the best we can, and just waiting for that line to be crossed and call for transport. If he goes in now, he will certainly be in ICU. This smacks in the face of comments by a couple Drs that said Tim is just deteriorating and we will know when we should or should not do something....right now he wants his cat, his pillows and my bed. I cannot take those comforts away from him. I would not be a good mom if I did. If we go any further downward, we will be in, and I will update from there.
Please pray....


Saturday, August 8, 2009 8:21 PM CDT



Well I am quickly coming out of my comfort zone with Tim. He is now just sleeping all the time. It is definitely viral at thsi point I am sure. temp, HR and respirations have all been elevated. He is really not well. Tim is very confused in conversation today and is not acting right. His G tube is really bleeding, and He cant catch his breath with coughing....but the alternative of hospitalizing him is worse. He will pick up whatever is out there. I will let this go till monday and then my comfort level is DONE.
Lianna seems to be catching this as well. I am now too.
Meanwhile please pray for tim, he is really scaring us with how he is acting with this illness. He has no recollection of anything right now.



Thursday, August 6, 2009 9:29 PM CDT

Tim is not feeling well at all and he looks horrid. He has a temp of 103-104 and no one can figure out what is really going on. We do know it is not a line infection at this time, but we are still not sure what the real deal is.
I had to make an executive decision last week about him going to soulfest or going to the hospital and stay home. I could have kept him home, safe from rain and mud, but I decided after much prayer that he should go to soul fest. He did, and it rained BUCKETS. I have photos that rod sent me covered in mud. Tent filled with water and everyone was soaked. BUT Tim had a calmness enter his spirit and he is calmer for real! he also came home very sick. The hope is that it was a life changing moment for him that week..meanwhile he is very sick. His respirations are over 32, and his o2 sats are pretty low for him. so far no pneumonia, but we dont know for sure. I have been running extra fluids all night to help his pain, he is definitely still dehydrated. We are going to work harder to keep him at home, which involves limited sleep for me.
I may have made a decision to go against all sense of medical correctness, but in many ways I am hoping I made the best choice for his heart...and head.
I will update after tomorrow mornings Dr appt.




Wednesday, August 5, 2009 8:32 PM CDT

Ok we are on urgent tim watch now....He has a high temp, coughing up a lung, congested, and has barely any voice. He has some energy so that is encouraging, however he is really sick.
I am betting he has pneumonia and not just a simple case at that. I have an appt first thing in the morning but now we wait and watch to see if we can make it that long.




Sunday, August 2, 2009 8:40 PM CDT

well Tim is sick. no voice, shiney face, low oxygen levels, and is barely moving.
I am looking at him and it just reminds me of how fragile he really is.
Reilly was up ALL last night screaming in pain in his legs. he cried and cried because he hurt so bad. He asked me "why didnt you just let me use my wheelchair" he had been standing for about an hour and that was enough to send him in to massive spasms. It was so sad.
I am hitting bed early because I am really tired.....

Friday, July 31, 2009 1:00 AM CDT

Well...we are going to be putting tim on a new med with the hopes we can get some good results. This is something used for people with dementia and it was actually stated that due to his MRI results and the fact his EEG has NO activity in the temporal lobes, Tim is in rough shape....hard to hear it from the doctors mouth even tho we already knew that.
I still could use a month away from the stress of daily life with him!
in other family news, josh seems to be doing well, and is working on getting back to school soon but meanwhile has been doing TONS of volunteer work with teens. he has a real heart for these kids and will do well with his career choice too. I think he is going to mix it up a bit tho. He wants to be with kids, and yet he wants music to be involved.
kris is kris. He is working hard at getting into college this fall, and so far is doing well. This is the kid who the school dept said would not be able to be educated beyond second grade...uh huh...I managed to get him as far as college...gee, really tough if you actually spend time with them! off my high horse now, but I am proud of him. he is truly amazing with his music and has a lot of potential. He has begun breaking through his remicade. his crohns is active again, and the kid is in a lot of pain every day. He is spending a lot of time back and forth at the hospital lately. totally killed any budget but things are going crazy for him at times and we need to slow it back down again before he is back in for surgery.
Tim just keeps declining. brain continues to atrophy from "traumatic brain injury" ie. strokes. hearing is declining in his good ear and he is angry about that. there are days where he doesnt know who HE is or who we are, and he gets paranoid to the point of 3 people needing to restrain him from hurting himself or others. other days he is fine, and almost baseline for him. Just hate the disease progression.
Lianna is doing well as long as she moderates her activity, drinks a lot, and also keeps her sugar levels leveled. cardiac has improved quite a bit with new regime in place. muscle pain is ok as long as he keeps her meds up and is careful. We are seeing immunology in october to go through things with them.
Reilly is my baby...who would have thought I could have cared so much! He is learning how to sign so well, and he does amazingly well with out stress or fear! He has had a learning frenzy the past month that has shocked me. We are going to capitalize on it!! he is using his chair more and more because it helps with proprioceptive behaviors. Love this whole autistic dx! could really do with out it. Funny thing is I am seeing him use alternative ways to communicate when he is hurting, and at least he is trying. He is so loveable and sweet...
I am looking forward to the day when he actually sleeps alone, someday maybe? we just emptied his room out from most of his toys and put them in the playroom. Hoping he will play down there so we can work on sleeping in his room. He goes in for additional testing again for neuropsych. We are looking at physical therapy for his tightness that he continues to have despite our working with him. He hasnt gained any weight in 8 mos, and he is not growing too much. very tiny for age. but I guess he IS bigger than when he was born! come to think of it a kitten is bigger than he was when he was born! We are holding off of IVIG for at least another month, to give him a break. he had horrible reactions last time. so a break is nice.
Updating on me is weird...
I am on higher magnesium now, with no recordable number-weird! I have diabetes insipidus, and evidently I have low cortisol. I have to go back to get a cortisol stim test...o joy. I need to see the physical med Dr again because my right leg has less sensation than my left leg and it is frustrating. I also need another shot in my hip for pain. On a good note tho, I have an amazing tan! ok, had to throw that in there...it IS 130 AM! I can be goofy if I choose.
I am falling asleep typing, so I am going to head to bed...well I am in bed, but I am shutting PC down...long day. sorry for the broken up and crazy attempt at the update. I started it late and I am dead tired!



Wednesday, July 29, 2009 8:27 AM CDT

For the next few days Rod, kris, tim and Lianna are off to a youth event with some people from church and about 20 thousand other people. It is a yearly event and we allowed the 2 younger kids to go this year. Poor Rod!
however it has been a nice time of quiet in the house and things are getting done for cleaning that cant get done with everyone around.
Tim is excited because he never gets to do this stuff, and it is probably the biggest mistake we have made in forever, but we are allowing it because it is a huge youth event and maybe it will change his heart some....maybe.
The Drs are simply not optimistic about the state of tim right now and I am not sure I want to fight with them, or accept it. Confusion!
We have an appt made with a new Dr who happens to be in CLEVELAND, and we need to be seen by him for tims brain issues. We head out there December 9th. The hope of everyone is we can get some good guidance in what to do. Is this the time to let go? Is this time to press hard forward? We just do not know what the choice will be during that visist but he is number 1 in the field, and we have to do this....
So for now, please remember the kids in prayer as they are literally on the top of a mountain at this event, pray for safety and opening of heart and minds!
also pray that poor Rod comes back in one piece...lol

Monday, July 27, 2009 8:00 AM CDT

Just a quick update.
Tim is going to be started on a new medication this week. Not going to be expecting it as a miracle but one of those would be nice.
I am going to have another week with out tim because Rod is taking him up to NH to be with the youth at soul fest, so I get tues-sunday with reilly!!
Speaking of Reilly, he is still very anxious and definitely not as relaxed as he was last week, so I am really hoping that everything we worked on, can be worked on again from home so he sees he can do it.
We are going to the canal walk today to let kids ride bikes and I am going to walk with my music...


Saturday, July 25, 2009 0:00 AM CDT


updating from a cell phone is simply not easy, so I waited till I was back home to do the full update.

I got to relax for the first time in many years. I mean fully relax my mind, my heart and nerves! It took a long while. There were days when I would fall apart without even a hint of anything being wrong, and then I would be fine again. It took me until 2 days ago before I could finally say I was relaxed, and it actually just hit me that I was sitting down on a boat and I could hear the bugs...bugs make sounds! I had never stopped to hear bugs before and that was when I realized I was relaxed.

Then I came home....

It seems I had to be told EVERYTHING that went on the ENTIRE time I was not here....I was being protected by Rod from all the bad things, and really just left to find some peace...but in literally 45 minutes of being debriefed by a person who works here, I was back to being nauseas and unable to sleep....this is why it is 1 am and I am awake despite a LONG day.
I did talk to a Dr while I was away and found out that tims phosphorous levels are triple high, and is creating a problem. He is also anemic again (back for iron!), and also based on imaging and clinical observations, it is determined that tim is extremely fragile brain wise. At this point the idea is to try and work with positives, reinforcements, and goals...instead of consequences for behavior, we will do goals for good behaviour. Sounds so immature, but that is where we are.
I have had a prayer this past couple weeks that may sound harsh to some, but I have a whole group of people that are praying this with us...we are praying that God will fully heal tim. Either by taking him home for complete healing, or by complete healing here....I do not want to lose him, nor do we want to place him in a hospital setting..but it is getting increasingly hard to keep him here. So please pray that God will heal this boy and allow him to do what his dreams are.
Reilly had a full emotional meltdown and then began talking and healing as well, while we were away. He has a special friend Anna, and she just got on his level and talked to him. She dealt with bruised thighs from him standing on her lap, and fidgeting so much, but she did so well with him, and he trusted her so much. He trusted enough to share his fears and really talk them out. it was precious to watch him heal. more healing came from constant hugs and kisses from Miss Penny. He adores her, when he would be anxious we would walk to her and he would find comfort in her arms and then talk about it later. It was precious and special. he has a special frame with hugs and kisses across the miles from her, so he can look at it and find his hugs there...
The other kids are losing it as well, but they are older and can manage a little better than reilly can. Lianna needs time too, but she gets out...
Everyone needs to figure out the place in themselves where they can get rest, where they are going to be able to retreat to in order to find that peace.
meanwhile kris is actively struggling all over again. He seems to have broken through the remicade and that is very much not a good thing. we are trying to avoid all surgical procedures on him so we need to find something else! I just know it wont be good if we have to come to that. Crohns is not a good disease, adding on that to mito makes it worse...
so please pray.
So in some ways I feel stronger, because I got the rest I have needed mentally. even my own dr recommended this because my body was seriously struggling...I have to go back for testing because my cortisol levels are way off...almost so low they cant find it! so off I go for a stim test.
ok loads of fun here, and I am going to go to sleep....maybe.
please pray for each of us, we all need it. some of us more than others still!!!!!

Sunday, July 12, 2009 8:22 PM CDT

I have enjoyed a week with a good friend and now I am off to see a few more!
A few happenings at home...
the fridge we thought we fixed ended up dying after all...freezer was working but for the past couple weeks we kept having the milk turn to cottage cheese...so one day I realized that the fridge didnt feel very cold...then it was cold when I checked it later...eventually during this past week Rod and Josh realized the fan wasnt working and that it was warm...so I now have a new fridge with a 10 yr warranty.
Tim called me while he was with Josh, and he was totally paranoid. He didnt know where he was or who he was with, he was yelling at me that he didnt even know who I was. He kept saying he wanted his mom, but I am his mom and he would not even listen. He is doing this more and more..this is what everyone saw before when his TPN was reduced, so it doesnt shock me, but it is hard to hear. He looks like he is 9 mos pregnant with his the swelling and the distention. No idea what is going on, but it is not good. One Dr said it is a dementia from mito, and distention from gastroparesis. I am hoping his nurse can figure out what to do this week with him and a Dr will look at him to at least work on his motility and belly. The best thing for me for a while is to be away from Tim. He is scaring Reilly and me with his confusion and I am not able to sleep much at all because of the fact he gets up alot during the night. Emotionally and mentally I dont think there is a lot left to me at the moment, and Tim needs calmness. So with reilly out of the picture and me too, I am going to rest with friends and so will Reilly.
Kris is in NJ now, and having some bleeding going on. Hoping that will stop soon enough.
Beyond that, I am just going to spend some quality time with myself!
I will say that for the past couple months, the most peace has been in my home. I cant go into many details but since we got a bad situation under complete control and removed, it has been so much better. Calmer and Lianna hasnt had the whining, reilly hasnt screamed and a real sense of family....amazing what a change can do. now to just get tim into control and me away for a while.
I am updating as things happen from a distance, tho...
please pray for tim...

Thursday, July 2, 2009 9:38 PM CDT

Ok this is not going to be medical but instead what today was like....
it began like this...
reilly said it best today...."mom this book says all the stuff we have to find so we can build a project....can I build a project?" So being as cool as a mom as I can be I say "sure honey, what do we need?" and he replies "I cant read mama, only you can, but I know the story and the song"... "huh?" I reply...."ya mom, its the Lord told Noah hes gonna build an arky arky,... we already have the rain so speed it up before we cant find the animals to go in by twosie twosies."
I just stopped and stared at him...but he is right! I think we all firmly believe we are simply going to float away.
so that began my day...
the other thing was Kris took his entrance exam to school today. This is the child that the school department told me 13 years ago "I am sorry Mrs Thorell but Kris will probably never learn beyond the second grade level"....so I ripped him out of school and he learned at home....guess what...he is going to college and he passed his exam and got placed in actual college level classes. granted its not Harvard, but he is amazing! He did it. I am so proud of him.

meanwhile back to building that ark that Reilly wants....I am seriously considering that!

Sunday, June 28, 2009 9:24 PM CDT

Tims stomach has stopped working and has begun to bloat a lot. He is feeling nausea a lot, and struggling with pain at times. Mostly it is very difficult managing him past few weeks, but a few days this week he actually was finally easy. It took 2 days this week to get a breath and feel almost human. ugh...once I had a couple days in a row, it was easy to step off the moving train and just stop! and boy did we! we did NOTHING for an entire day.
something funny that went on this week..(I figured I could share this and you would see realy life in a desperate home) I decided I was going to the beach. SO, I packed up a few chairs, and a bag of toys. Made our nurse change into shorts and tank top, made kids put on suits and flip flops, Then did the same for me...Then we got in the car and went to the beach...we sat outside at the waters edge IN THE FREEZING WIND AND RAIN! when we left the house it was sunshine and 71, when we went 9 miles we dropped down to 60, and wind was 20 mph gusts, and it was raining...but we sat there for 15 minutes and had umbrellas over us. Kids dug in the sand, built a castle, and picked up shells. when we could not do anymore because we were frozen cold, we decided we had been to the beach so now we could go home and relax....we did.
u know, desperate times mean desperate measures!
less appointments this week, and that helps. I can get my house back in order again. and hopefully some day this week the sun will peek out.
please dont forget the prayer requests I asked for this week...please keep them in your prayers.





Wednesday, June 24, 2009 2:04 PM CDT


I keep getting emails about updating and doing it more frequently...I honestly am trying to do that but its hard to update when you really dont feel like putting into print what life really is like! I cant be so honest to explain how it really is because if I do, there are people who get very upset by it. But if I share it as all being handled beautifully, then people feel good.
truth is, it is not going well. truth is, medically things are really on a teeter totter. truth is, it is very hard to wake up each day and know you have to go on status quo or worse- watch it fade away a little more. truth is, its harder to go to bed and realize you didnt have enough hours to do it all today.....truth is, it really stinks!
So let me end this whole thing by saying what the emails will surely say...no we are not angry at God...no we are not blaming God....no we are not falling apart....no we are not doing anything but being honest, it is very hard to manage 5 people will ongoing medical issues each requiring a huge amount of hours daily just to make it to the next day. It is a mini trauma unit here some days, and some days we have it fairly simple on our terms but harder than most people on their bad days. God did not DO anything to us, nor did we do anything wrong to be this way...(have had those emails too!), however, God has said He will see us through them all. I believe that, and so does Rod. The Apostle Paul had chains, and was in jail....we have chains here too, and somedays it does feel like jail. Paul was upset by it, angered by some of the things but also knew he cant change what God chose for him and God saw him through it BLESSING him daily. Yes we have many blessings occur...tons of them. I share them all the time. But just like any normal person, we dont always smile or feel perky...We are not angry, at all...we are tired, worn out and simply trying to stop the world for a second so we can catch our balance and stand up again....
we have some prayer requests..
1) malisa and her baby girl julianna for continued health and for strength to come back to Malisa.
2) bonnie with her ongoing medical needs. Pray for comfort, and pain free days.
3) Heidi and the home remodeling needing to be done. Pray that it goes smoothly and that they will have it finished soon.
4) pray for the Mito conference! it is this weekend. We need the Drs to get together and come up with new treatments and new fresh ideas. Pray that something will come up that every patient can use. Cancer has Chemo, and now Mito needs its own treatment. So far there is NONE. pray for it!!! If not for our lifetime, pray for it so no other family has to go through this. Swine flu has a vaccine coming up soon....but mito has nothing. pray pray pray.....

J, Thank you for our "fathers day gift"....I hope you know what a difference it makes....

well back to meds and cleaning....
I promise if things happen, I will update...

Tuesday, June 16, 2009 9:25 PM CDT

not a whole lot of new info to report, except I do want to say we got word that the enzymes that are off, are enzymes that indicate a lot of different things. BUT we did an echo on Tim and found that he did NOT have a heart attack as we were TOLD by a dr....in fact the cardiologist said the person who told us this is not a cardiologist by specialty and should leave the specialty issues to the specialty it belongs to...in other words she over stepped and screwed up!....totally understood and will be reported as such.
with all that said, we did find out he has a heart murmur that is new and that is something to watch but definitely not a heart attack.
his amino acid profile is so out of whack tho...we need to address this and soon.
now just so you can understand that our life is not all medical, we have had the normal household things go on....the well pump for our water into the house had to be repaired...at a LARGE sum of $$ and then the freezer part on our fridge and freezer, needs a new fan we think because it has begun making noise so we are watching it closely! lol
then tim wanted to help dad do some work, so he decided to put "gas" in the lawn mower....except he put oil and gas mix in it..no one started it so we drained it back out...but it was stressful! LOL. Then Rod was driving home and realized he didnt have breaks...so there is another fun thing.
so as you can see, we live a "normal" life too.
now back to the kids...
Tim is struggling a lot with this infection he has. He has no voice now, which we all enjoy immensely!, but its annoying. He is being so good, and he is truly scared. You can see it in his expressions and the way he is talking. we are talking through it but he is really beginning to see life in a way he never has. I am grateful at this point that he doesnt really understand it all due to cognitive decline. silly how the fact of cognitive decline makes me happy...but in this case it is blissful glory.
we have many appts coming up, and a few things for mom and dad too...we are ending this week on a super fun note and getting to spend time just being us...this is something that we need to strive to do monthly in order to remain sane and eye to eye....Thank you to our guardian angel for seeing that we remain focused!
Well, I will update when we have more medical news that we can share...meanwhile just keep praying that God keeps the eyes of the Drs in their own field, and that they TALK.
Thank you for the prayers and following our journey.

Thursday, June 11, 2009 9:21 PM CDT

we are home.
WAY TOOOOOO many things went on this hospitalization. We have gotten some answers that we thought we already had nailed down, just shot down....one Dr that had been in the background has suddenly made the demand to a few other Drs that she is now in the lead, and has been tremendously comforting to me today personally. She explained that the muscle biopsy that we had done 3 years ago, was far worse than ANYONE had told us. She told us that some blood work had come back that seems to show that somehow/sometime, Tim had a micardial infarction...in other words, a heart attack! However she needs to run further tests to be sure of what she is seeing. ALSO, there was a few MRIs that have been done that showed brain atrophy and we have seen worsening over the past 6 mos in some ways, and not so bad in others...however when you take the symptoms that everyone has seen and actually READ the MRI, you can see he has a large area of damage..he has manganese toxicity, and also perm. damage as well. This covers every symptom we have seen.
Now add to all of that, it has been discovered that he has some sort of metabolic process that is harmed by protein...I dont even know or understand, but this Dr is a great chemist and scientist and we need to trust this Dr will put the new info together with the old info....we know he has mito, we are looking at some sort of inflamatory process that is causing him to build antibodies to his own blood, and then find out why his biopsy was never disclosed to us they way it it truly is...also need to knock heads together and chew out a neuro and another metabolic person.
One thing of interest but I dont quite understand why...we have to stop his TPN, but not completely. He will have only protein, meds, and vitamins. He is not absorbing things at well even IV. No one can explain this. however he will not be getting full TPN. The calories will be low and all of this and nothing else for now. His diet needs to be protein, low carbs. We dont know why, but like I said I have to trust her....

This is all unfolding. We just dont know what more is going on as of yet. We see cardiology monday, more cardio labs for enzymes are being drawn, and waiting for answers. There could be another reason for labs being off, but nothing that makes a whole lot of sense...neither does the heart attack that supposedly is the reason for labs being off...so we need to look at things.

ok, well as soon as we get info, we will certainly update more.
Thank you all for following this jounrey with us.

Tuesday, June 9, 2009 8:12 PM CDT

I am so upset over things that have unfolded today.
MRI results that are worse than originally thought, and Drs who really need to sit down and talk to each other even tho they are about 100 feet from each other. I think we have a great team but some of the newer team members havent talked to the older team members! and it has been very important.
I cant get into it yet, but its only because I have to get more answers in order to explain it better....just needless to say tonight has been very emotional and frustrating to me. Rod is in the hospital over night with Tim, and I go up for the early mornings through late days until he can get back. Life has to stand still for a day so I can catch my footing and we can figure this stuff out.
God has been so evident tonight....Tim is sick, God put us in this spot today so we would have the people in place that we have. God has completely opened up eyes and given me a way to say OK, I see you there!...anger, frustration and feeling so bad for Tim right now, then seeing that God has this covered is really eye opening even tho I have already known it.
I need to get some sleep...it has been a long and exhausting day.
Please pray for one of our Drs and for an answer to be shown to her. Please pray.
Thank you for following our journey.



Tuesday, June 9, 2009 0:12 AM CDT

it is after 1 am, and I am finally home from the EMERGENCY ROOM yet again....I am starting to really resent the hospital so much.
Tim has been admitted. He will be there for a while until we find out what infection he has.
he spiked a temp today and he is puffy and shiny, and in pain. He looks rough. When we got to the ER he was going to be admitted to Pedi ICU based on his presentation and labs. however, he didnt continue to spiral downhill, so after 4 hours they determined they would put him on the medical floor and watch him closely...and they do!!!!!
He is on 2 IV antibiotics right now, and then we are waiting for the cultures to grow out on his line, throat and also flu cultures. This should be fun.
He looks really bad.
I will update as time goes on. meanwhile I am going to pass out, I am exhausted.

Tuesday, June 2, 2009 7:32 AM CDT

Wow, I spoke too soon, because on sunday we spent the entire afternoon and night at Tufts medical center. Have I said just how much I hate this disease?
ok, well I do.
We have an understanding of what is going on brain wise, and since neurology refused to listen to our nurse or us for the most part, and just said the old standbye of seizures and meds, we decided we were getting an advocate for tim. I demanded a social worker, who happened to be someone from one of the clinics we go to so she knew tim well. Her recommendation was to get psych down to us. So we did. I demanded that too because no one thought it was needed....but if tim didnt need them I was soon going to! so they got them...3 hours later. When the poor team came in, they had no idea why they were there. Tim did not need psych. HOWEVER when i explained it all, they understood. Finally I got them on board with the fact tim cannot self report, no one is hearing us describe what he tells us, and they only see him after the fact and just say seizure...so they agreed to listen to him, and then report for him. AMEN. Neurology was so angry by thes by the way....yesterday the neuro Dr said she listens to us, and then proceeded to cut me off mid sentence, and I said "and this is why Tim will have an advocate to speak to you"...O, she finally got it. She finally said what was said to me by another Dr a long time ago....Tim has seizures, these are brought on metabolically, medically, and by sensory overload. YAY...finally a reason. So we have a new plan in place, increase of meds, and a neuro who was called on the carpet and now is going to listen to it all by way of another Dr if we need to, or just us.
Just frustrating....thats all...
monday was quiet, we had our nurse here and kids went out and played farmer with her. They planted an entire garden of veggies, and had so much fun. In the midst of medical ridiculousness, there has been such an amazing amount of peace in the house as well. Stress of medical is here, but personal peace during these moments is really there. O, I do want to run away still, and stay away, but I can definitely say the house has a peace. Its amazing what God can do when you just listen.....
Off to another Dr today...for me...still sick after 2 weeks, and even tho I know what I have, I am not improving, so I have to go back and see if the meds are right.
I will update later...


Sunday, May 31, 2009 7:56 AM CDT


keep praying.
Tomorrow we go to Boston Childrens Hospital, not my favorite one, but one I have to go to for this particular Dr whom I adore. We are going to be asking some deep questions and hopefully getting some guidance.
One thing we are positive on is that This whole event was brought on by Tamilflu. PLEASE PLEASE PLEASE, if your kid has a medical problem and is on other medications too, ask the big question of what is worse....the flu or the med reaction. Tim almost died from the medicine....one dose...just one dose.
Right now he is not feeling so well, and complained of sore throat and nausea, we will have to find out what is going on with him, hoping no fever comes to play because that will buy us a "cruise" to Tufts medical center for PICU stay. His central line IS in jeopardy because he almost pulled it out during the seizure on Thursday. He definitely dislodged it a bit but it is still in a good placement.
He has been much better the past 24 hours except for throat and nausea....just keep praying.
We sent a note off to CDC about the reaction which is IN print in their severe reaction notes, but we had to inform them. Doctor is as well.
just wanted to update...

Friday, May 29, 2009 10:39 PM CDT

friday update...I just updated but it got eaten...I am not able to do it again...not tonight I am too tired. please pray for tim. He really needs it a lot.


Thursday, May 28, 2009 9:44 PM CDT

It is with a very heavy heart that I am writing this post....Tonight I was at the hospital with Lianna for her MRI and I got the phone call from home that Tim was totally in a rage. Let me tell you that my normal commute of 1 hour 15 minutes to 1 hour 30 minutes, became a commute of running to the van, paying for parking and driving the whole way home and in my garage in exactly 50 minutes and 22 seconds...I know this because that was how long I was on the phone...I cut a ton of time off my trip...I dont think the police could have seen me as I hydroplaned by. Tim was throwing things around the room, screaming and eyes darting. It took 2 people to restrain him and shoot a HUGE dose of valium into him to stop this, because as time was going on it was realized that this is a tonic clonic seizure...complete with clonus, and blown eyes. Even before the valium was in him he lost conciousness, and when assessed his eyes were darting under closed lids....his BP was totally normal, which is shocking to us because he was in such a ripping rage motion...He really pulled his central line, but not quite out. This all happened over an hour....but he lost conciousness and was out for about 15 minutes with no sensory reactions..he began having myoclonic jerks and twitches severely..then he came to confused, more normal,groggy and in pain. Final word, very serious grand mal/tonic clonic seizure brought on by his first dose of Tamiflu....yup tamiflu....Reilly woke up at 5 am with a high temp, pain, and headache. When at 730 he had a temp of 104.8, I decided to call pedi on call. I had to bring him to the Dr at 10 am, and after a few hours our immunologist said he showed enough symptoms and results consistent with swine flu, so we had to get put on tamiflu, and Tim was put on as precaution.
So in essence we have found out that one kid is really sick, and the other kid is highly sensitive or allergic to Tamiflu.
I quit. I cannot watch this sufferring anymore. My husband is beaten down from pain and struggling to restrain a nasty disease affecting a brain. My son is losing his cognitive skills and his brain is firing randomly and seriously, and he is in tears because he is scared over what is going on while he doesnt know. I am tired of feeling so inadequate that we cant stop this progression of disease. O ya, I can smile and say everything is ok, but in reality there is so much pain right now that it is impossible to grin and bear it. I am tired, My family is tired....my insides are twisted and cannot comprehend why a brain should be so confused and firing off randomly and how medicine to help actually almost killed this boy tonight. Its scary, angering, sobering and most of all brings me to my knees...
please pray for Tim. He needs it tonight....and his body needs full healing from this. We cant give him the med anymore so please pray he doesnt get violently sick. please also pray for reilly and his body pains. He should be fine, but please keep him in prayer.
Thanks...I am off to bed, I think I am going to crash now.




Wednesday, May 27, 2009 9:12 PM CDT

ok....I wasnt going to update but I had a friend ask me to journal things daily so people could really see what is going on in our mundane day to day experiences....ha...so funny. day to day is too much for me to handle, and no one in this house wants to relive them in writing anyway...plus the fact we have a few people who read this that have an issue with journals and this would be just too much.
With that said....today began with a 3 hour commute to boston due to lovely traffic. We had a follow up with neurology for Tim. Well, we have an issue with labs that have come back that dont look very good. We also have new documentation of a TIA, with cognitive loss. He is scheduled for Neuro psych testing and more labs. His CPK is VERY elevated, and he is showing cramping and pain in his Left leg again. His Platelts are low so now we are dealing with bleeds too. How can you clot and bleed? It doesnt make sense but it happens. And then we get into this vicious cycle. argh, I am so tired of daily trips to boston.
I have IVIG in Waltham for the kids in the AM, then I have to rush back to quincy and get Lianna, and leave the boys with the nurse (switcheroo time) and head up to Boston (AGAIN) for her MRI/MRA w contrast....I am leaving the house at 8:30 AM and I may get home by 8PM, but cant be certain.
So how do I feel? Well, I am feeling medically better, but still coughing. My throat still hurts a bit too. but emotionally I am a mess. I cannot keep the pace up that is going on. Too many medical things going on, and too many trips to Boston. I sat in the car this morning and really wanted to cry because of the traffic. There was nothing anyone could do, but I am not paid to do all this, and it is killing me to keep doing it. I hate doing this, and I hate the answers of change. Tim has procedures set up for the summer and they never go well. It is always a mess, he has horrid post op issues. O and then the other issue we have is more seizures...which brings up the other information that we got today. Tim is now the proud owner of Partial complex seizures that result in paralysis on his left side. So all in all it was just a peachy day.
I am glad it is late and I can sleep...I hope. But I really long for the days when life was simple and I wasnt as involved medically. It is easy to take care of one kid, but to do 4 kids and myself it is hard. Not complaining just stating each one has their own problems...but I havent been up to par either. Add to everyday dosing and "things", we have to deal with emergencies and kids falling apart. Our poor nurse comes in and says "Line up!" because it is like a mini triage unit.
I think if I can get the pain under control for me, and the bronchitis, I would feel better. Once my hip settles down and I can sit, I know I will have a better mindset. Tims issues are ongoing and Kris is having a flare of Crohns...Lianna and Reilly are having horrendous nightmares over an event that happened here at the house, with a previous employee and the fall out from that may require therapy!!!! Nightmares are not fun, and little kids should not have to be afraid of sleeping....besides mom said they should not be afraid! and I NEED SLEEP! lol
ok, I am rambling and I need to end this and crash...once I deal with a beeping pump, a flailing 7yr old who is "sleeping" next to me, and quiet 2 young men who are coming in from church late!

Thanks for your prayers for our family and friends. Our friend Malisa had her baby girl this afternoon. a HUGE baby girl. 10 pounds 5 ounces and with black hair...her name is Julianna Hope. Congrats Malisa...and please keep praying for Earl and Meagan too and their medical issues.
Thanks for everything!
I will update when things change, I promise..


Saturday, May 23, 2009 8:42 PM CDT

Ok, well Meagan wanted me to say that everything is wonderful and fine and nothing at all is going on....
so I will start by saying that and now I will tell you all the truth....
sorry Meagan! lol. I thought that may get ya!
Unfortunately with 7 people and each with things going on it is NEVER calm at our house...if it was, then we would all be very worried.
I should start by saying that things are not as bad as they could be. however Kris is having a definite relapse with GI pain, and not feeling very well. He is a few weeks away from remicade and this is somewhat concerning. but along with some really bad things, some really good things have come his way. He has to complete one more course and he will have graduated school!...yay...so he is off to community college to take the last course so he can graduate. Also he is looking at taking a course at Boston conservatory of music through a program there for kids with autism. He is THRILLED to get the chance to get into music. so those are positives...
Tim is just having a few setbacks but for the most part he is stable, as stable can be for him. He will be going in to the hospital to have a procedure done. We need to see if we can stop the bleeding and at least find out why he is. So we go in on June 11th.
Lianna is having some major issues. We had a routine metabolic visit with the mito Dr. And he saw something on exam that bothered him, so off we went to the rheumatoligist that we had already seen anyway....she has inflamation in her right eye, and her joints were swollen. So now he wants her to have a full work up because he is concerned that she has an auto immune disease that is either primary or secondary to mito. He is worried that it is primary to mito, and if so we need to work on that. He is confused and lost. Her blood work is off matabolically, but so are her rheumatoid factors....so now we wait..she is a 12 yr old girl and the concern is she is presenting with new issues at a critical age.
Reilly is doing well...he has learned over 60 signs, and is signing a lot for things. He is better at learning signs than at reading words. He can figure out what it is about, but cant read a word! argh, but yet so cool to watch.
I have Bronchitis and I am struggling. O2 sats were kinda low for a bit but they are improving.
ok, thats pretty much all that is going on.....see Meagan, its all in all pretty good!

Thursday, May 14, 2009 11:23 PM CDT

sorry...I know it has been a bit...just trying to get things in order and had stuff I had to do...BUT I am writing now...so for the people who have emailed me privately and told me that I need to speed it up a bit, I AM!...geesh...
lets see..
Josh is done with school this year, and has passed all his courses....thats a good thing..
Kris is having set backs with a medication he has been on. LOTS of side effects, and we had to stop the med. BUT he will go back to baseline and it should be ok. Dr is looking for another med to replace it with.
Tim..I will do his update last..
Lianna, is sick again with what looks to be throat AGAIN. She has nausea, tummy pain, sore throat, fever, and cough. so much fun. We are going to the Dr on monday in Boston and will figure this all out. So far her cardiac events that we have a monitor for have shown her to be tachycardic and have shown the rythym to be off. her heart rate was 220 and she was dizzy and weak. She honestly has done this 3x and the rest have been about 180's. however she is able to get them to settle in with laying down and slow breathing. We find out what to do next week with the info we have so far.
Reilly is struggling with propreoceptive behaviors but we have found some positive ways to corral it this week. He cannot read or spell anything, but he is finger spelling everything in sign language! he is spelling words and learning signs. Makes no sense, but he is using speech and fingers! I will take it, now if he can spell, hopefully he can realize he can read too.
Tim has had cluster seizures since over a week ago. serious ones. they seem to be settling down the past 2 days but he is losing so much memory at this time with all of this going on. He has finally begun wearing his hearing aides full time. He enjoys hearing what he can. He also is picking up some sign. he doesnt like it but reilly is keeping us hopping.
beyond all of this, we are just enjoying a quieter than normal home life for a short time. We know all will fall apart soon enough! but for now, even with all this going on, it is quieter than normal. We have many hospital appointments coming up...of course that would be because I have told the doctors once the summer hits I am taking a LONG break and hitting the beach! I got the usual laugh but they said ok....so we are taking a few long weeks to enjoy weather and quiet days very soon...so the kids have the memo....no emergencies or illnesses during late june or all of july....lets see how that works.
Please pray for a bunch of my friends...
sophie, meagan, donna, dalton, craig, keith, joanne and kids, heidi (I miss u soooo much), Bonnie (luv u!!!), malisa and her new baby to be (U r going to be the absolute besstest mommy!!) and Earl. Please pray for the health of these people and the trials they face daily...I just pray that God gives the courage in their fight, and heals them in the best way He chooses.
I will update again, I promise...really I will....

Friday, May 1, 2009 5:29 AM CDT

Happy Birthday Lianna!!!
she is 12
Long amounts of time waiting for a girl and being told I could not have anymore kids because it just would not happen...it took so much to get to that point and now 12 yrs later she is here and although not feeling so well, she is happy to be here and so are we happy to have her here.

Events going on right now...
Josh hurt his foot and was in a soft cast for a while and is now wearing a boot...His own dumb fault not anything from any disease except for being a 22 yr old male child! LOL...but he is ok, just gotta heal a little more..

kris is sick with sinus infection and really struggling with energy. He is doing well with so many things tho....he has become so responsible and helping out around home that it is almost scary. I actually said to him that I wasnt gonna get his antibiotics because if him being sick means that he is more helpful, I would rather him be sick....o well, he is on meds now...but the good news is, he is still helping around the house! I am serious, this kid is actually growing up and his whole attitude has changed positively and I could not be happier.

Tim....well, Tim had a stroke a couple weeks ago. Confirmed.
He is feeling ok, just a little easier to tire than normal, and his hearing suffered some set backs. cognitively he has gone back a bit, and its noticeable with school work. He is forgetting names easier and that is so sad to see but we are working on ways to fix that. We have a PCA that we are looking into hiring that is a ASL interpreter, and she will work with all of us. Also have some plans in place thanks to a super good friend who has coached me so well (thanks Heidi! you thought I was ignoring all your ideas but I wasnt!) Tim is starting to lose weight again and his meds are all changed around to see what they can do to improve things. The weight loss is good thing right now. His thyroid was not working right and now he is on meds and it is doing better.

Lianna has had cardiac events that bought us an event monitor. We are using it daily and have had multiple events. So far we have been told she has tachycardia of unknown etiology. Her heart rate has been over 180 and once over 220....so we need to keep using it to see what to do. Drs are not thrilled. We need to wait for another 3 weeks and we will get a plan of action. Her headaches are getting worse, but we are adjusting meds for that.

Reilly is fighting bronchitis and keeping me up nights with coughing fits. We have spoken with a developemental ped who specializes in autism and she said that the propioceptive behaviors we have with him are causing regressions. So we are working on plans for that. So far we have seen positive results with some deep massage and also with strong holds and weighted blankets. He is even trying to work on school things with this therapy stuff going on, so that is positive.

on the home front....everyone knows that we had to fire a PCA for verbaly abusive behaviors. That has caused serious stress here. It had been a long time coming. We had actually decided 6 mos ago that we didnt like the behaviors at all (lies and accountability issues) and would rethink it if we saaw it again...then a month ago it was horrendous...we made one last attempt to correct things, then this past week went beyond anything any human being should deal with. Laziness, lack of accountability and Lies on top of abusive language just was the end....it has been such a HUGE relief here int he house since then tho. Kids are all calmed down and it has been a sweet relief. I can handle most things but the lying was too much...and it was stupid lies such as my kids have braces, so therefore this person had them when they were younger...it was OBVIOUS it wasnt true...when asked to see a photo because it seemed hysterically funny, it was suddenly none existed and dont even ask again!...ok...school...went to a BIG boston insititution because they were in the bean pot hockey series...show me a photo? nope none exist...I should ask your family....dont bother it was a long time ago...graduated from a community college with an associates degree...little lies and then the bigger ones began. When I started having them pointed out to me by hubby, and then kids began seeing them, I took a big look and realized they were all right....then the language. I am done. I didnt need that anymore. To walk through a christian home school conference and have this person swearing at a loud level, that speaks character.
I think what it boils down to is growth. I feel like I have grown and Rod has grown so much through the things here that I am not going to deal with someone pulling me down or my family. My kids are not perfect and I admit that openly...no ones kids are. However, I dont think they deserve to have their disease thrown at them in their faces by a person, nor do I think kids with brain damage deserve to be verbally abused when they cannot even control themselves never mind control the language being spewed at them. So anyway, police were called and PCA is gone. End of chapeter in our life and like I said, drama is gone and it is really happy and peaceful here.
It has been emotional for me, but God has given me such intense peace the past couple days...I have seen amazing growth in a short time and God is in control of it.
Well my short update is turning into a long one...
Please pray for some really amazing friends of mine....
Malisa and her baby who will be here very soon! actually baby is trying to be sooner than she is supposed to be! pray for malisa's strength because she is trying so hard but now we need to pray that God intervenes and gives supernatural abilities!!!!
Bonnie for health and pain free days. Pray for her friends to spend time with her and for her to know intense peace daily that only God can provide. She is super strong and she cares deeply.
Heidi is so cool...she is my go to person for info and she is "wicked intelligent" as we would say in massachusetts! She has given me great ideas and they are coming together wonderfuly. Pray for her health to stay stable and for the house plans they are undertaking. they deserve this more than anyone I know.
pray for all my little kiddos...sophie, clay, cole, dalton, Craig, keith, asher, zach, and True who is in the hospital right now recovering from surgery.
Thanks for checking in with us and following our journey that we are on....
dont forget 2 things I have been told lately...

1. Todays test is tomorrows testimony
and
2. Be the kind of woman that when your feet hit the floor each morning the devil says, "Oh Crap, She's up!"

have a great day!

Monday, April 20, 2009 7:34 PM CDT

My husband wanted attention evidently and ended up spending hours in the ER last night with a KIDNEY STONE! no lie...my very healthy hubby (ok minus the rheumatoid arthritis) actually needed massive amounts of medication in order to let that stone pass....it did finally at 2:30AM. I felt horrible...his blood pressure when he was in the ER was 202/180...I panicked. I thought he was having a heart attack! But I knew it was a stone. I said that before anyone else said it.
Tim is really not feeling well at all. He is struggling today. A LOT.
Lianna is improving a smidgen, but really needs to get this under control. Her problems are so hidden to the naked eye that it is hard to understand till you see her fade fast. heart issues are often like this we were told...her rash is improving tho, so that is nice.
I am fighting something now...sore throat and cough...hope its allergies.
We had the Marathon today in Boston and our patient partner runners were simply amazing! Each kid had a runner partner. They did such a wonderful job at running and sharing their experience with us. Thank you to Jeremy, Kristie and Leevi!!!! you guys deserve a special award for doing this and being part of our lives.
I will update more later...



Friday, April 17, 2009 7:04 AM CDT

Just a short note because this week has not been a good one...
it started out amazing with my friends here on a vacation for a few days. But while they were here, Tim had a stroke episode. It was very obvious and lots of people saw it. spoke to all the Doctors involved and that brought out new issues. We are going to go in and find out where his bleeding is coming from. So The Dr is giving me a few weeks to do some things, and then Tim is going in the hospital to go into the OR and find out where this stuff is. We need to address the bleeds, we need to see why he is having a stroke situation again. He is tired a lot, and seems "younger" in his speech. He keeps saying "but mommy I have I have been really good for you this week"...17 yr olds dont say that! I agree he has been great, but he is flip flopping in age ability! His teacher has seen a big change in him. She saw his SLE and I think panicked. but I talked to her and she is much better now.
on the lianna front...
her biopsy results came back and she is deathly allergic to latex they said....ok, thought I was latex free here, but guess not...so I have to investigate. Also, they cant tell what, but we need to find out all her other allergies. They know she has them but she is a tough test. Her dysautonomia makes it hard as she does not react to histamine. o well
I need to run. I have 3 weeks to get things done, then obviously have a change of life for a while again....I HATE surgery or procedures in my kids! They take so long to recouperate, IF they recouperate! ugh!!!




Sunday, April 12, 2009 10:44 PM CDT

It was said this week, "If you really want to know what is going on for real, then ask"....otherwise I am going to gloss over the heavy stuff and try to update.
It is hard....
hard to watch Lianna begin a decline cardiac wise. it is hard to hold down a screaming child that is begging you to stop as they take a chunk of flesh out of her to hopefully find out why she is covered in a horrible rash. It is hard to watch the fear growing in her eyes each time she has palpatations and a blood pressure that is too high. it is simply hard watching it again!
But i am blessed because she is also back to playing with a friend she hadnt seen in almost a year, and she is happy because of that. I am blessed because she is excited to wake up each day and learn more about the universe around her. She is blessed because she has a will to fight that makes me look inside and question myself!, yet she fights.
There is so much more but I will support and love and she will move on and we will be ok.
Tim...
tim....tim is losing ground mentally daily and is so innocent in so many things. He tries to be a big boy, but the things that bother him are young boy like.
his stomach is in terrible pain, having lots of bleeds, and now in need of IV Iron again. We r still on our regime of IV meds for his infection, and we have 2 more days for that. He hasnt had ONE seizure since we increased the meds by 300 percent. amazing what a high therapeutic does can do!
he is falling, sleeping a lot, and really just not with us some times.
YET, we are blessed because he is full of smiles. he is such a fun kid and loves to laugh. His stories are old, and confused but he is a joy.
I was looking at photos and old school photos/work he had done a while ago...and I was pretty choked up. Its hard to see his decline and harder to know it hasnt stopped yet.
But I am blessed because of innocence and love.
We were given a HUGE HUGE blessing this week. My hubby and I got to go out on a date for the first time in many years. We went to Fenway park and saw a Red Sox game! we had a blast!!! I got a hot dog and ate 1/4 of a sausage onion and pepper roll. It was so much fun. These tix were given to us and it was such a surprise....it was definitely a God inspired moment!! That night turned out to be HORRENDOUS after the game, and it was definitely directed at the fact we went...but it was a gift and we loved it and we connected. It has been so long since Rod and I connected like that, for so many hours, and alone to boot! Thanks J.
This past weekend, our nurse and I got me out of my funk from the stuff that went on, and we painted the playroom!! She and I had so much fun. We cranked music up, let reilly play quietly, and we painted. My Neice is going to paint a mural for me in there and I am so excited. She is so sweet and is just going to do this for me.
So Tims nurse and I did the painting, then we had energy...so we systematically cleaned the house, more like spring cleaning. Tomorrow my friend liz is here and her daughter is being hired to rip apart and organize Lianna's room once and for all. Poor kid still hasnt unpacked that room from when we switched her room down to the basement. That is the last thing to do for cleaning and unpacking and I am so done!!!!
next comes a couple home projects that need to be done. a closet needs to be built, and we need a second emergency exit for tim. I guess you can have a personal elevator, but you need another exit in case of fire....so we need to build a ramp on the house...we have original plans from the house, but not sure we should use those.
anyway, Jesus came today and showed everyone He is alive and takes the pain we have and helps us find the way to make the pain, work.
I am falling asleep now, but I do want to wish everyone a wonderful Easter time.

Friday, April 3, 2009 9:33 PM CDT

There are some days when I simply just want to run away and forget I am a mother, there are some days that I actually begin making those plans. There are even days when I wonder what would life have been like with none of this stuff going on...and I cant go any further in my thinking. This week I have wanted to chuck it all and walk away from the stress of it all because I simply cannot take anymore "one more thing" going on. If I were to even put it on here in print you simply would not even believe that it is all true...It was like a scene out of laurel and hardy yesterday yet it was not funny. house phones, cell phones, all ringing all day long, hospital visits and then lianna had a cardiac crash. she has suddenly developed cardiac problems that are involved and serious. it was scary to call cardiology on call and have to report the things going on here....it wasnt GI, or metabolic, this is her heart. very worrisome. spent time with multiple Drs on the phone today and just simply realized that this is exactly the same age Tim began. I cannot go through this again.....none of us can...
the best advice today was from the cardiac Dr we have had for years. He told me that we just need to have the faith that we can make it through this battle so we can continue to fight our war. and it is true. THIS is a battle, one simple miserable battle...not the whole war. I am not fighting the war today, only the battle.
on top of all this, my entire freezer full of meat got shut off by the circuit popping with a storm we had...so we lost a TON of meat, and what we didnt lose I had to spend hours cooking and now have to re freeze it. Freezer isnt broken, just was victim to electric burp....but we lost so much....it was the capping off of the week. Our case Mgr saw me today and said "ew, u look like _____" and I agreed! I feel like it to, I said.
So now I need to pick myself up, brush myself off and move on to end this battle once and for all. I am tired, I am emotionally wiped out, and I just want some peace. I am praying that God will grant Lianna comfort and help us to find the perfect way to help her through this.
I am heading to bed...I am wiped out completely.




Wednesday, April 1, 2009 8:53 AM CDT
nope this is not an april fools joke, its true...
Tim has a systemic infection that began as a sinus infection that traveled to the bones in the nasal pharyngeal area. He also has multiple little tiny blood clots in his legs that will eventually break down and be absorbed we were told. Nothing was large enough to be a problem that could cause stroke. He is having charly horse pains in his legs and nerve pains in the lower part of his right leg (his good leg!) The CT scan showed the bone being infected and that was what they saw. So he has bought himself a few weeks of IV antibiotics and then a follow up CT scan to be sure it is clear. His immune system is very weak as well, but we are all scared to death to start up IVIG again right now due to his reactions to it. But we may have no choice. He is in a LOT of pain throughout his body, and part of it is because he is fighting this infection. The infectious disease Dr said we were SO CLOSE to being septic that he is treating him agressively as if he were septic. All the major player Drs agreed that was the perfect course to go. He should bounce back faster than if he were septic, so that is good. We spent 3 days trying to wade through tests and results in order to figure out what was the primary problem and make sure we knew what way to treat.....a little faster would have been nice but they are doing their best and we are sure of that.
so for the next few weeks we are covered with the meds, but we are back to the wacky schedule of IV meds, IV fluids and TPN...trying to get them all on board and not missing a beat....
I should be ready for the nut house by...next week???
maybe sooner! lol
I cant wait for the beach to be warm enough to chill out at. I have already been there but walking around covered from head to toe in coats, hats and mittens isnt quite what I want to do....
will update any changes as we go along...

Tuesday, March 31, 2009 12:23 AM CDT

We have been told the spot they see most likely is not blood clot, but Neurology, Neuroradiology and Neurosurgery want Ear,Nose, and Throat Specialist to look at this now too...and also they are speaking to Neuro Opthamology. We have been in limbo all day and now we have to go back to the ER. He does not feel well...his pain is at a constant level now even with meds, and he is plugging through. We had to speak at a local MDA meeting tonight with all the IAFF firemen, and Tim was a trooper. He made it through the meeting and asked to go bowling because he just wanted to be normal. So we let him bowl at 10:30 tonight and he is now sound asleep but hurting. He has not had one ounce of food for 3 days. It is sad but he wants nothing to eat or drink at all. We will be back to the ER tomorrow morning for more testing....we need to know what this spot is and that means further testing. As soon as we know more, we will update.


Sunday, March 29, 2009 9:23 PM CDT


I guess Tim had a change of plans for us...we just got home from the ER. Tim was in a horrible amt of pain in his eye and we saw the pediatrician. They felt uncomfortable with the look of him and sent us to the ER. They did a CT scan on his head and they found something. The ER doctor wanted us to stay for pain relief and to get a better idea of what the scan showed but tim wanted to be home and we felt like it was safer medically to be home tonight...so we are here until tomorrow morning when we go back. We will get better results tomorrow and find out what they saw. then we will make a plan to address it. we were told Neuro was the specialty to handle this which means the find was in his head...
just worried right now...
so I guess my calm was only before the storm! april is coming and hopefully with it, it will bring PEACE.



Sunday, March 29, 2009 8:51 AM CDT

Ok...caringbridge upgraded the system and I could not even figure out how to sign on! but I did....FINALLY

I am so glad march is just about over. I think we have finally hit a lull in health issues.
Tim has seizures finally under control. No life is not perfect but the day to day watching decline and seeing so many weird things happen seems to be stopped for now. We still have the issues we will always have but Tim has his mind clearer and that is a such a positive for us.
Lianna is doing well, her stamina needs some more help but she is doing much better. We saw her cardiologist this week and even they were worried about her heart murmur and the fluid balance issue. We have some great ideas to try and with time and work I think we will get there.
Josh got a clean bill of health cardiac wise...he seems to be doing very well mito wise since he has been doing what he has supposed to have done.. fluids and better nutrition go a long way!
Kris is still having lots of pain, but he is not having major bleeds so we see that as great progress. He is still having major nose bleeds but we can deal with those! its the GI bleeds that cause us the most problems. He gets extra fluids with IVIG and Remicade so we have seen improvements with him.
Reilly is finally healthy! No more streps around here for now. We found the culprit....it wasnt the kids who had it, it was the PCA. She was carrying it for a LONG LONG time and she kept giving it to the kids. So we think we have finally gotten rid of it in her and the kids have been healthy.
I am struggling to get back on my feet energy wise after food poisoning, but doing much better daily. My wrist is healing and I had to have a cyst drained in it. Once they did that and I got a shot of cortisone, my wrist felt better...2 weeks in a cast, and nother 10 days in a brace and I feel MUCH better!
The Dr got IRATE with me because I "should know my limitations" and my reply was I do know my limitations and my limitations cant hire a full time housekeeper, so I have to do the work myself and if I get injured I will deal with it....so instead of a reply from him, our PCA agency was called and then the surrogate for our family was called by them...so now she is going to have a meeting with the PCAs and tell them what I cant do and what needs to be done...in other words, I am going to lose PCAs because no one wants to do what the Dr wants...but beyond all that, God is truly answering prayers and we are seeing Him in our home. So many little things need prayer still and we will continue to pray for Tims healing.
Please pray for my friends with mito. Please pray that Bonnie will be out of pain and be able to enjoy her life that she has. Pray that God will allow her to continue to be used in showing others the beauty in life...please pray for Malisa and her new little baby girl on the way. Pray for her endurance and strength and also that she will see that no matter where she is or how she has to live, that the little baby will be her driving force each day and that she WILL be the best mom ever.
please continue to pray for the others as well, heidi, dalton, craig, keith, donna, sophie, clay and cole, and asher too....
Spring is coming (well somewhere it is) and changes are happening....praise God for the new life we all see because that is what makes living like this bearable.
till next time..

Thursday, March 26, 2009 4:43 PM CDT

ok, I am dancing with utmost joy right now and I just had to share....
GOD is SOOOO good...he is truly answered a prayer...
Tim had his EEG done today and the results show an absolute perfect EEG. The Dr increased his meds to double the doses and was concerned by it, but his body is handling the doses so far and it has ended the round robin of seizure activity....her words exactly were "I looked at the last EEG done and I am shocked to tell you that his last test showed hundreds of events in a 24 hour period, and now with the increase of his doses he is finally clear!" This is a huge answer to prayer....
I will update more later but this was too good to hold onto!

Saturday, March 7, 2009 6:38 PM CST

sorry for delay in updating but I cant type w/ my right arm in a cast, very well.
I will update when it is off...too hard right now...SORRY!
anything urgent I promise I will have someone update if anything happens!!
quickly,
Lianna is improving daily but still has swelling in her body.
Tims MRI showed increased atrophy in the center of his brain and both temporal lobes.. we added a new medication and its is like a miracle the fact he has had NO seizures in 2 weeks. we increase it again tuesday. praise God for miracles in this. Cognitive losses r huge still. memory is bad.
I have to end now, arm hurts and hand is swelling...

Monday, March 2, 2009 9:58 PM CST

satan is trying his darndest to make life impossible...
right now I have 2 kids crying in pain. not just little tears but full blown screaching and crying from muscle cramping. I so hate this disease...
how in heavens name can I go one more night with limited sleep? how can anyone in this house continue on with out true rest so we can fight off infections....this is totally insane. I need a week to catch up on sleep and I dont see it happening...
satan will not win, because I know God has a bigger plan here and somehow we are going to overcome it all and be back on track...but in the meantime sleep would be helpful to function!
Tim had another MRI tonight to look for changes. we need to know what is going on because things are just so confusing right now....praying for answers.


Sunday, March 1, 2009 8:58 AM CST


sunday night update....
Lianna is home but her pain is back to being bad for her, and she is finally asleep but looking horrible.
Tim was improving a bit until 3pm when his migraine hit and he blew up a fever. Had his nurse come over and deal with some things so I could sit down and rest. Tim is not looking good at all. blood pressure is weak and he is running low temp. finally sleeping again, but complaining in and out with headache and stomach cramping.
pls keep up the prayers.



Sunday, March 1, 2009 8:58 AM CST

O this one gets better and better every time we turn around....
NOT
Lianna is hurting...pain and nausea still, but her meds are working to keep her relatively stable and with impending snow, we are going to be getting her home today....she will have a recovery time at home for a while.
BUT
Tim went up to visit her yesterday and to get time with daddy, and while there he decided he was jealous of the fact that his sister had attention and medications, plus alone daddy time, and he thought that throwing up all over the parking garage was appropriate! yup....high fever, throwing up, wont even discuss other fluids coming out!
I was up all night with him at home on IV fluids at max rate, doling out zofran and being a barf buddy....yup fun...
NOT
My hands hurt from purel, and soap...my neck hurts from leaning over buckets with him, and my eyes hurt from lack of sleep...I am looking forward to getting us all in one place and recovering from this one...
on a positive note (yes there is one) he has improved a lot since 6 am, but he still is not back to any baseline yet....Lianna had it far worse than us all...
thats the update for now from here....

Friday, February 27, 2009 12:13 PM CST

update from the hospital...
game plan is to get swelling under control and then pain under control. This is much more complicated than simple GI bug or virus. It is looking eerily similar to Kris with the crohns disease and colitis. she is looking a little better right now and hopefully she will remain looking better and we can see about coming home sometime this weekend...hopefully before the snow begins!
update later tonight.



Thursday, February 26, 2009 9:33 PM CST

way too tired to give details now, but pray for Lianna.
She has been admitted to the hospital and is very sick.
she has suffered a really bad mito crash and we have no idea why at this point. Lots of tests being run still.
very autonomic and also high fever, throwing up and totally dehydrated. She definitely has myoglobinurea (sp) and this is not a good thing for her. After 3 liters of fluids her blood pressure has not responded well, and her fever is still up. her heart rates are still tachycardic and over all she is very upset and in lots of pain all over.
please pray...
will update when we know more.

Monday, February 23, 2009 9:16 PM CST

update time...
saw Neuro again today and very interesting info came out...
some very confusing info came out...
some of the EEG results that have come out are clearly showing something abnormal beyond seizure activity...one of the things we have not known and would never have known is that tim may actually carry a diagnosis of Autism as well as other neuro things. too much to even absorb right now...even though our mito Dr didnt seem suprised, we were really not ok with this.
we have new MRIs ordered with metabolic studies included. Another EEg is being run, and we have added another medication because we need far better control on seizures.
new today on sick front...
tim is having weird symptoms. Extreme pain in his tummy and bladder pains from neurogenic bladder. Temp on and off, poor blood return to his nail beds. he gets very sweaty then gets very cold and shakes. Everything is way off but nothing is blowing up to signify a line infection, but it is not normal.
this is just the tip of the ice burg, and so much more is going on with him....please just keep him in your prayers.

Sunday, February 22, 2009 8:32 PM CST

All I can say is, Tim has a temp. Tim is refluxing everything and complaining of just not feeling well. We are heading back up to Boston to Tufts tomorrow early in the morning to get some answers to the increase in seizures FINALLY, and while we are there, I will not be overly shocked if they decide to admit him because of the on and off temps. I am leaning less and less to Line infection, but I dont know if something is just hanging out waiting to blow up.
I figure I should report some happy news every now and then...
I was going through all of the school work done this year and I am happy to report we are almost completely done with the school year! Dont ask me how!! I have no clue...but Lianna is a quick learner and she has flown through the things she was given. She has read a total of 22 books since September, and written reports on each one, plus created lapbooks and time lines. Little bugger still is trying to work on Alg.1 and she hasnt realized that the material she has is actually high school, and she is only 6th grade....shhhh dont tell her.
after everything else that is crazy, it is fun to sit back and enjoy the times when we are all just pouring through materials and actually getting things done! Now....if I could just hire a maid for a day to get spring cleaning done! Now that would be a blessing...
Please keep praying that Tim will improve over the next day and that we can dodge this bullet.


Saturday, February 21, 2009 9:42 PM CST


random thoughts here, and probably considered crazy but something is very wrong tonight with tim and I cant put a finger on it.
he is in pain and not feeling well at all. Lots of symptoms but no real direction....inclination is line infection but no fever yet.
please pray my intuition is off due to exhaustion from always trying to be one step ahead!
and
Please pray that Tim can rest tonight and feel better in the morning.

Thursday, February 19, 2009 10:12 PM CST

I am just updating because we spent a bit of time in the emergency room with tim and had to have some work done on his hearing while were there. The results are that he has now tested "flat-lined" on an audio acoustic emissions test on his right ear with the exception of a few low tones. This is how the left ear began but it was a shock. We had to get his hearing aides RE adjusted....and then on monday we go back with the aides to get them adjusted to the new settings they come up with. Also once again we have been asked to PLEASE consider strongly signing with tim, but tim is refusing it and I cant sign to a wall!!!
Tims leg is continuing to be a problem and off and on not able to use the muscle. The problem is the muscle is strophying further and we dont know why. we will be seeing the correct Dr for this on thursday next week and neurologist on monday. part of the problem is parastesis (spelling??)...or pain in the nerve in his quad muscle. also we need to know if he had DVTs going on, because he does indeed have blood clots in him.
We got home late today and we are really tired, so I am going to bed and sleeping in late! at least for now, he is semi stable until we get some blood work back and some tests run on monday.




Wednesday, February 18, 2009 7:42 AM CST


We have been rather incognito because so much is going on that it just seems unreal to write it all out and try to explain....but then again everyone is asking me what is going on, so people must want to know...but I will warn you it just seems to unreal.
we have all been passing around strep throat now for about 6 weeks. No one is getting over it, instead we get beyond it, finish our meds and then start right back up again. I have never seen such a round robin of infection in years! this is insanity. Tim is the only one who has not had strep yet! he just gets his laundry list of things.
Kris has more and more tummy trouble going on again and is really trying to do better but is really struggling.
Tim is having trouble with his legs, specifically his left leg. This is the leg that was destroyed by the Dr in Indiana due to his major bleed and lack of care they gave him. Well he is losing this leg off and on, between pain and inability to move it. The Drs here are very concerned because this is a major issue because this leg is so destroyed from years ago that it has very little reserve to pull from as his muscle is already atrophied. but we are looking into reasons and trying to find a workable answer. Tims hearing is further declining and his hearing aides are not even strong enough which is very disconcerning. Almost to the point where I am afraid to take him in to be checked for fear we hear the really bad news. I cannot handle that, and neither can he.
he is still actively bleeding through his GI tract but we dont know from where and even tho I am not overly worried about that, the Dr is very worried. We do have a positive answer tho...the thyroid meds have improved his blood counts a tiny bit and that is good for us.
Lianna is still having GI trouble and we go back next week to find out what the biopsy showed. We also need to see rheumatology with her and cardiology because she now has a murmur and a lot of autonomic issues that are NOT going away and she keeps having strep so we need to be sure her heart doesnt have damage from it.
Rod is not doing overly well...it was discovered he has glaucoma, and uncontrolled rheumatoid arthritis. only good thing from that is we now know that HE is responsible for the RA diagnosis on Kris! I know I have to take the nasty credit for Mito, but I dont have to be responsible for RA....doesnt actually make me feel any better but it at least isnt just me!
I have one more job assignment left for me to do and then it may be a curtain call...the economy is slowly eroding jobs and mine maybe next, but if it happens it is ok. The guy took a chance on me and it worked well. It was great and fun and I enjoy the peolpe I work with. It gave us the extra we needed every couple months to get through. o well..keeping my fingers crossed that it will keep going through this year but if not, God will provide.
please keep my mito friends in prayer as each one has a story and each one is different. please keep the ongoing medical needs here in your rayers and please pray that God will reveal tims underlying issues to us so we can work with them.

Tuesday, February 10, 2009 1:32 PM CST

Reilly is doing better now. He is still having autonomic things go on and his heart rate is dropping pretty low, but he is alert and doing well.
We took photos of the entire hospitalization because he is making a scrapbook of the "dream team" as he calls himself and his bear. lol...so we have him and his bear go through all the procedures and into the OR. funniest part of the day was the fact his Dr came to us and said "we have a slight problem......" seems his wife was in labor and we were next to be done...so he did us and off he went smiling and in panic! he gave us his cell number and said to call him tomorrow...but after noon!
what a day

Saturday, February 7 , 2009 9:34 PM CST

I am so not happy at all....
Lianna is throwing up and high fever, I am sneezing like a fool and coughing...and then while tim was being restrained during a seizure I was trying to hook up his g tube extension to put in valium and he thrashed and kicked me so hard he broke my finger. I now have a very pretty splint on my left hand. I am so not happy right now!
I would really like to walk away right now.......


Friday, February 6, 2009 9:34 PM CST

Well, Kris' lab work has come back positive not only for Mono, but Epstein-Barr Virus as well.
My Magnesium levels are not budging upward at all even on mega doses of Magnesium and I cant handle much more of it...I am so sleepy and I am struggling with the fatigue daily. Tim is really emotionally not doing great...he is tired of being sick and he is very much done ...it been a very long winter and all of us are pretty wiped out from being sick over the past 4 weeks.
The thing that is getting me through is that I know I am not alone in this journey...please pray for all my mito friends and their families. will update after reillys surgery from the hospital.


Thursday, February 4, 2009 10:48 PM CST

I never do this for an entry but so much is going on that I can't even begin to put it all on here with out it sounding too unreal....so please just pray for each of us.
I have had my second bout of strep in a month, Lianna has had lingering issues, Kris is not doing well at all, Tim is very sick, Reilly has surgery coming up that we know is dangerous for him and may have lasting effect on him, Josh has cardiac issues occuring again, and now Rod has been diagnosed with glaucoma, and Rheumatoid Arthritis and is now on a chemo drug called methotrexate and other meds to handle it....my job is questionable now with the economy and it was getting us by quite well, and add to all of that, emotions are running in everyone.
God has been so good to us despite all of the stuff going on we see His hands in it.
Please just keep praying for continued strength and emotional sanity. Please pray for things to slow down and become stable. Pray for job security for us and our friends, and please pray for all the mito families that health stability can happen.
Thanks...I will be more specific next time.



Friday, January 30, 2009 9:00 PM CST

Ok, Lianna had her surgery/procedure. She was a mess...she does not handle this as well as the boys do, but she did ok once we drugged her up good.
Her procedure was put off a few hours so by the time she got an IV and was getting done it was 17 hours of fasting. THAT is not good for her. She ended up having a mito crash. She was weak, pale, and autonomic issues. BP was 88/27 and then her O2 sats were low for her and she was very dehydrated. It took a few words from me and my reasons why she was doing this and the anesthesia guy knew I was serious...he agreed and ordered D10. She perked up a bit after that....She had a lot of trouble with anesthesia. She reacted and they gave her Epinephrine in the OR! she now has an added med to her allergy list...who would have known! I was in with her and they gave her the med, and she turned scarlet red, began crying about not being able to breath, said her body ws burning and she had needle pain all over...I looked up and said "ok, you call this normal and ok", the poor guy said "uhmmm nope" so he gave epinephrine and something else, plus a pain med and then gave another drug quickly....after about 5 minutes she was fine and she got her sleepy med and the test was done. The results so far show ulcers, lots of reflux and we will find out the rest in a couple weeks....biggest thing was no reason was found for the choking, so we can eliminate the need for fixing something but it does leave on the table weak muscles that are not coordinated.
She definitely has developed a heart murmur and that we have an apt for to evaluate and make sure it is nothing more than innocent. Today she looks horrible and white, but she is holding it together. She is sore, but nothing bad, and coughing a lot. Still having residual autonomic issues. We r doing a lot of fluids still, but we are home! for a 15 minute procedure we were there over 8.5 hours...we were not allowed to leave post op due to issues, and the precautions they needed to take. so it was a very long day and we were wiped out.

The new news on Kris is, we may have to be admitted next week and have him on PPN which is what Tim is on, except it is temporary and only partial nutrition not total nutrition like tim. Kris is down 3 pounds in a few weeks and we cannot keep going this way.
next up is reillys surgery and that one is very scary.
other than all of this, nothing else is going on that is new and urgent...




Wednesday, January 28, 2009 9:20 AM CST

Wednesday PM update
Tim's central line clotted off completely today on one port. I tried to flush it and found out it was clotted, so I tried to draw back to see if I could rock the clot out, no such luck! Barely a pink stain! Changed out cap and tried again...nothing...clot was in the cap but beyond it too..
anyway, out came the good ole TPA, and began to get it in the line by literally dripping it in as nothing was moving. after about 15 minutes the syringe began moving better and the TPA went in much better....knowing I can only put in so much, I also knew the clot was lower in the line, so I used only half a dose. BUT the clot got pushed UP and not broken up, and we threw the clot...so about a 30 second delay and tim holds his head and goes pale, telling me that he is all woozy feeling and very tired.
ya, just another day in our house....



Wednesday, January 28, 2009 9:20 AM CST

Wow, january is almost over....
So much to update but I am going to do the Readers Digest version and then expand later on with more info.

Kris is not doing well at all. He is sleeping between 18-20 hours a day and losing weight like crazy. He is definitely going through something but we dont know what is truly going on. Is it related to the bleeds or whats going on in his head? we simply do not have the answers yet. Did labs and tests and waiting on results.

Tim is looking better in some ways. Still having seizures and some pretty scary ones that last a less than a minute, but look very scary. Eyes darting and he screams. Its not fun. He is now having chest pains nearly daily, and we are looking for signs and symptoms of infection but there is none. His stomach has totally shut down, nothing is going through at the time and it ends up plugging up his gtube as it is pressure coming back to there...he is on thyroid meds now and so far we are not noticing much, but so much has changed and we cant be sure what is what anymore. We also have a neuro that is looking into PANDAS to see if that was what Tim had going on while we all had strep. there is a chance it could have been a factor in things but we need further tests to rule out some other things too.

Lianna is going in to the hospital tomorrow for endoscopy as she is choking on liquids a lot lately and her tummy is tender too. They are looking for allergies and the question now is does lianna have Eos. Esophagitis. Does she have Ciliac....so many questions. If they find a blockage in her throat that is causing the choking they are fixing it then and there...so we will be in a couple of days. This is her first procedure and she is worried but hopefully we will be ok.

Reilly goes in on feb 10 for surgery. He is the one we worry about as he reacts horribly to anesthesia and we have multiple Drs that are going to be actually there waiting for him to come out to take over....it is precarious but should be ok with all the pre steps we have taken.

other than that, things are holding steady.
Have to run, school things to do and so many apts to run to, plus we have a nasty storm that is just lingering and annoying us all...
have a good day!

Thursday, January 15, 2009 6:51 PM CST

There are some days when I sit here and I think I cant take one more breath, what do I do now?, how do I keep it in?, or what do I do/say so that no one freaks out?
Well I am going to tell you each time I write in this spot I dont do it to impress anyone or to frustrate anyone, because that would be selfish and immature...I am writing from the heart and what things are really like here in the house as we all have discussed it and how we all as a group feel.
I have had SO many emails about not understanding how we can go on each and every day without losing it, and I want to tell you the ONLY way, and the ONLY reasons are FAITH, HOPE, LOVE, GOD, FRIENDS, EACH OTHER and PRAYER. When it looks like everything is caving in we reach inward to each other and talk. We all have the same faith in us, and we all have the ability to dig into that faith and keep moving each day. We dont do it for anyone else, we do it because God has given us the power to be able to do it.
With that, I have to be honest....we had a very important Dr apt today. I have researched and read, and studied so much on Tims symptoms that I knew pretty much that what we were going in for was a particular problem even tho we only had minimal proof by way of labs. With out provocation, the Dr blurted out what his feelings were on Tims issue in his specialty...and he said what I was thinking! First shock hit me, then relief that I was not crazy, but then reality hit that Tim has another organ involved...another system involved...one more diagnosis! There is not ONE system not affected with him.
Tim is starting thyroid hormones due to hypothyroidism which explains some of the things we see right now, but certainly not all of them. We are working HARD to get into the new Neuro office very soon. We need to get in. We were told he needs to have some other brain scans. Another Dr today said that it is pretty apparent that tim has had to have some sort of event or stroke recently to account for the big changes, but also agreed that the way it is presenting is disturbing. We have even had 2 people who have never seen him before ask us point blank this week if Tim is autistic! no.....you do not develop autism! You have it or you dont....but this is how he is presenting to people and one was a Dr! He is constantly having paper in his hands, writing notes, and just continuing to tear paper and write notes of no meaning. His enjoyment is very immature, his frustrations are coming out in temper tantrums that are very very immature. We are finding we have to praise him for things that we should not have to praise for, and give rewards for simple accomplishments. He is excited with praise and rewards, but on the other hand he is not grasping reality right and he throws a fit..
I am not angry at God, or asking why us....I am living with it, working hard to support the disease so people will understand it, and at the same time live without regrets. I am angry at disease, would not be normal if I wasnt.
With this whole process going on, people are watching us closely for reactions good or bad, to see how they should react too...all I can say is Pray and Praise. Pray that God will continue to keep us safe, and give us time with each other to enjoy life. Give us the ability to reflect on positives and guide us through the negatives.
Praise that we have had so many blessings. Praise that we have friends all over the country who ask daily how we are, and friends who simply call to pray. The sweetest and most precious thing is to come home from a hospital and have a message blinking..listening to that message and hearing "just letting you know I love you and we are praying for you"..That kills any negative feelings right there! God Bless all of you that do that.
Praise that God planted us in the perfect church for us. The leadership is strong, supportive and most of all real. Praise also that we have the most loving, caring and personal relationships with our Drs. and Praise that even tho the world sees us as diseased or different, God sees us all whole.
Now before I end, I will let you all know that every single one of us is on antibiotics right now for strep! yup ALL of us...including our help!...lol....you know, out of everything going on in our lives, this actually seems very humorous to us at this time! LOL...there are 8 of us on meds. o well...we had to find SOMETHING to laugh at.
Bless each one of you and may God be with each one as you begin your new day.

Monday, January 12, 2009 10:57 PM CST

crazy, insane, busy, out of control, and did I say crazy? Well that is what our weeks have been....but one thing it has not been is without support. We have some of the most special people who have emailed and called and just simply been there through a lot of weird things.
Let me start by saying before midnight HAPPY BIRTHDAY ROD! He turns a wonderful __. He would kill me if I wrote it here! LOL...so I wont. But I will say on the 18th it is our 23rd anniversary and we got married when he was barely 20...so...do the math.
but I didnt WRITE how old he was...it was trivia for the day.

Tim has had more meds added to his daily med list. tripled the meds actually....it was agreed that we can just watch the bleeding in his GI system because we r doing everything and we cannot put him under for testing for any real reason unless we plan on fixing it at the same time, and that is not gonna happen as that would involve so much more.
It has been discussed with Dr W that it appears tim has had another stroke episode but we honestly cant think back to the date of exact change, just we have had it going on for a while, but we estimate 4 -5 weeks...great.
His CPK is elevated again, no one can say why.
lots of other things going on. We are using valium more and more on him and we are hoping the apt on feb 10th will be coupled with med changes that we can live with...
we r getting his thyroid looked at on thursday as he appears to have elevated tests that signify hypothyroidism. It will be interesting to see what comes of it.
mentally he is spacing out at times on info that he knows. peoples names that he loves, animal names, time, date...but then he acts fine. weird! brains are so hard to figure out.
I am still in bed. I cannot shake this and I am still weak.
I wanted to grocery shop and hit the sales, but I was way to sick to do anything. Its not getting better yet, I just keep sleeping. can barely swallow without choking.

I am going back to sleep...I owe so many emails back right now. I promise when my voice works, I will call all the return calls, and write all the email replies, when I physically can stay awake....
I need to get better... cathy and I are going to go see friends next week...it is a 5 hour drive and I need to be able to sit in the car so we can do this...I need magical powers to sit me up right now!

please pray for gwen....she is in mgh right now and I know gwen can fight. she is almost 7 and she is a fighter with heart. please pray. she is on dyalisis and also vented. She is not well...but pray she gets enough rest in her body to fight this and can win....we all care.
please pray for all my other mito friends..heidi, bonnie, kristie, annalise and kristen, true, dalton and craig, annmarie and sophie. please pray for little sean too. he needs health insurance to cover his meds and the state dropped them due to a mailing error...pray for mercy! (I think the usps needs the mercy but wont go there)
And keep praying for malisa...the baby would not disclose its gender...so you all KNOW it is female now! LOL....but pray for the health and safety of baby and keep malisa healthy for her little (girl) baby.

heading back to bed now...hopefully I will get out of it soon...not the way to spend my weekend...it was boring sleeping so much.
will update with more info later.

Friday, January 9, 2009 9:12 PM CST

Just an update...
now I am sick! I am gonna pop a kid in the noggin for this!
anyway,
new issues for tim that we cant understand. he now cant go cross-eyed.
we cannot induce it at all, and I have noticed that when he is playing or under stress he curls his left hand. Neuro saw it last visit and it was noted as a problem but no one said WHAT that problem was....ugh
We have 6 apts next week for tim to try and understand the changes that are going on. The one thing that keeps getting brought up is that he had to have had a stroke in the past few weeks...but all we can say is we cannot say he had one at a specific time. but yes, it does make sense. Also we know his seizures are not under control even when we cant SEE them...too much is going on.
we will certainly update as we get answers.
meanwhile I need to feel better so I can go to these apts with them.....




Thursday, January 8, 2009 9:02 AM CST

Well the new Year has begun and things have begun to rear their ugly heads again...
Ongoing issues with Kris still....and then Tim must have been jealous or something because he decided he had to have increase in seizures. Also, we have had some cognitive loss as well. He forgot names of things, places and people. When reminded of things to help spur a memory he became very agitated and only settled down when we just gave him all the information and helped him move on. The fear is that he has had increased brain atrophy which is what one Dr firmly believes, but the question is out there as to whether or not he had another stroke(albeit small)...the other issue at hand is his O2 sats have been pretty low at times and that can mess with your head. So we have begun in earnest to try and decipher what the deal is. Also to add to this, his stomach and intestinal tract is still bleeding. We have maxed out the different meds for reflux and GI. So now we need to see if it is worth having a procedure to find a bleed source or let it go and just consider it daily inconvenience. The brain issues are getting hard to deal with. We can have wonderful days for DAYS, and not so wonderful days... days where it looks like he is lost and days where I feel like we simply need to admit him and sedate him. It is really hard to deal with this stuff some of those days. please keep him in your prayers.
My friend Malisa finds out if she is having a boy or girl friday...even tho I KNOW it is a girl!....it just has to be. I want to win some sort of prize or at least honorary auntie status! LOL...
Please keep my friend Bonnie in your prayers as she is really struggling with this mito beast. I wish I could do something for her to take away her pain, but I cant except ask you for prayers for her.
I need to run and get some school work done and manage Tim somehow...

Monday, December 29, 2008 10:23 PM CST

I wanted to briefly update on kris.
He is in a LOT of pain in all his joints and headache that wont go away. Rheumatology is concerned he has a blood infection so he is having blood cultures drawn. We do know he defintiely has strep as well. The biggest concerns of the day are the fact he is in so much pain (supposedly it is very rare to have pain with only strep), and the fact that he has protein spilling into his urine and large amts of ketones. He also has high bilirubin in his urine...He is slightly dehydrated but not bad at all which is why it is worrisome that his tests look like this.
They are also looking into whether or not he has relapsed with mono, but because he gets IVIG and is immuno deficient, he wont show the same antibodies that we all do and if he has them we cant be sure if it is HIM or the IVIG remnants showing it.
We wont know the cultures for a couple of days, but as soon as we get more info we will update. Thank you for the prayers!!
Keep praying for Timmy, he had 3 days of nasty seizure activity. However it does seem that the valium kicked in and
broke the cycle.
Please pray we can fill nursing hours and that we can settle in soon to get back into school.
Updates will come as we know!!




Saturday, December 27, 2008 10:40 PM CST

just a quick update...
my son has decided he didnt like breaking tradition of being in a hospital over a major holiday!...we did get through the holiday but Kris has a flu or something...103 temp, chills headache that feels like a spinal headache he said...bone breaking pains as he called them, and a blood pressure of 90/40, He looks like a horror show. He also has moderate ketones which for a mito kid is really bad.
we will be seeing the cruise ship soon enuf I think..(thats the floating hospital for those of you who dont know the term cruise ship- it makes the hospital sound more appealing than it really is...)
I will update when I know more.
Also could you all please pray hard for my friend Bonnie. She is really not well and I would appreciate her being covered in prayers tonight.
Thanks!!!

Tuesday, December 23, 2008 8:40 PM CST



Sorry for the delays in writing, but it was not easy to update the past month.
The Dr that decided he was God and wanted timmy to be on a certain type of medicine, created a huge problem for us! Our other Drs involved told us NOT to do what this Dr said because it would be very dangerous for a mito kid. We listened and reported to this Dr what we were told, and that we chose to try a second opinion or maybe go back and rethink what we could do as a team...and this Dr didnt like us for questioning him or making a choice that he didnt make....so he decided to turn us in for medical neglect. Lucky for us, all of Tims Drs agree that it would be a HUGE mistake to do that medicine and this other Dr has no case!!!! Our Drs and case Mgrs are so in tune with Tim and the other kids, that no one can falsely accuse us. Even the Dept of Social services when I called them about this, said they are tired of families and disgruntled ppl accusing others. BUT we had to wait the 45 days so that we would not be accused of "talking".
the time is up, no one can do anything. Our new friends at DSS are on our side and telling us they are very supportive of things especially since we are heavily involved in agency case mgt for tim. One Dr having his ego hurt...equals insanity for us for a time.
Now...we are ok...
I want to say that God has been so amazing through all of this. It is wild to watch His hands lead as we wait things out medically.
I cannot explain why tim is ok right now. He had a month of seizures then all of a sudden nothing! We stopped IVIG for the holidays and miraculously only a couple of actual seizures, but beyond that it has been simple. We had his line leak a couple times but realized after a bit it was defective end caps....scares us because it meant it was compromised but he is good so far. The non eating days are back. He is not eating much at all...small bites again. his J tube is gone...we are only with a G. He is struggling with GI bleeding still but seems to be actually improving a bit....about time. We are trying to decide if he will be going in for surgery in a month...but I am thinking I dont want to!
Kris is holding his own. He had an MRI tonight because he is developing a curvature in his spine. The other thing with Kris is he has had MULTIPLE bleeds this past month. One lasted over 4 hours and we called 911...we were out of state when this happened but we decided to cancel the call once we saw that it was somewhat improving....of course it wasnt great, but we got it to stop. He is really weak medically but at least he is fighting as best he can.
The other kids are holding their own, as best they can...Reilly will be having tonsils and Adenoids out soon and that is bad for him. He struggles with any anesthesia as it paralyzes him for hours after. So please keep him in your prayers.
I could tell you all how the bad medical things bother us, but to be honest we have so many angels in our life right now and God has given each one of us someone special to lean on. Our friends have been the biggest support and the reason we have been able to go on each day. We belong to a GREAT church and the people who are working with our kids are so special.
Christmas is a time when we can go back and reflect on individuals who have blessed us with special moments...I cant name too many names here due to privacy, but you all know who you are!!! picking us up by our bootstraps and getting our feet on solid ground has made us feel human and worth something! Email buddies who have become prayer partners in every area of our life. Friends who are distant but are more like sisters and cousins to us, and share special moments with us like our Ellie the Elephant! Shawn and Sara whom I miss more than words will ever say. Homeschooling friends who have gone through birth, death, and emotions for years and have earned the right to be called sisters! Friends who are magical moment makers...special people who have touched us so deeply and created memories that will never be forgotten-we love u so much. Friends who have been there for my entire life and all my memories include you!!!! Our mito family that understands the unspoken words of hurt and frustrations, along with hope and joy when an accomplishiment is done! And our medical team who absolutely has the best interests in mind and makes sure that each step is thought out and carefully done.
Each person who has come into our lives has blessed us so much that there are no words that could properly say thank you.
So many things have happened in a year...so many achievements and so many losses...tears, laughter, amazement, wishes, magic, and prayers...Each one of you has weaved yourself into each aspect of each of them.
May each and everyone of you have the most blessed Christmas time and not forget what it truly is about...
God loved us so much, cared about us before we were even born, even tho He knew we would have mito!!!! He loved us, knew that each one of us and all of the ppl in our lives were worth more than what the world tells us....HE sent a baby! That baby is the reason we celebrate this season. Yes a baby changed it all. no child is a mistake or an error...He was born and He loved us...He gave us the reason to HOPE...He gave us the reason to celebrate life....
Dont forget the reason for the season!!
We may not have much, but we do have each other and the knowledge that we are loved! Economies can fail, but God never will.....
Merry Christmas!

Monday, December 15, 2008 10:23 PM CST

I know I know...it has been a while, but please just bear with us for just a bit longer.
we are ok, we are in one piece, we are all together and doing fairly well.
quick rundown,
Tim is bleeding spontaneously for some reason and now has a yeast infection. We will be following up on that with one of his Drs.
Kris is still having pains, his spine is not well. he has an MRI of it coming up.
Reilly has a high temp and it is not going away. It came on suddenly saturday night and its still very high.
Lianna is well, so far.
Josh is well.
Mom is holding on, and ok.
Dad is doing ok.

Please keep praying for us, and I promise when I can, I will write more about things going on.
Couple more days...ok, just a couple more days.

Sunday, November 23, 2008 7:20 PM CST

Friday was Reilly's 7th birthday. It is hard to believe that 7 years have gone by already. Reilly was the surprise child that brought me blessings and joy with the love that he shows. If it wasnt for reilly being born, we never would have known the disease that was about to rob Tim of childhood...God doesnt make mistakes, and He obviously had a reason to give us Reilly.
Reilly loves to sing and share his passion for adventure. He is a l ot of fun to be with and generally gets us laughing. Then at night he snuggles up close and always says that he loves me..That little guy just warms a mothers heart with those words. I look forward to watching him grow up a strong young man...with a heart to help others and bring joy to them as well. I am very glad he has been allowed to grow up happy, innocent of life, and with a heart that loves God so much. He will be a mighty voice some day, but for now he is my little reilly that was named after my favorite hockey player of all time...Terry O'Reilly. That man was strong, a real fighter and yet put his family before his career when it came to health. I had a ton of respect for him and I think Reilly has a wonderful name sake!!

There wont be many health updates for a short time, I will update later in the month of December unless something comes up. I will be in touch by phone with certain people or will do private emails, but updates will be minimal and I will explain later.

Please pray for Amanda's family as she became an angel this week, she was 16.
Please keep praying for Bonnie. She went to church !!!! yay!! she has been unable due to her health, and she finally made a way to do it and was able to go. I am so excited for her.
Please keep Malisa's little baby in your prayers. I know it has to be a girl..I feel it...if I am right I wanna win a prize or something! lol I have prayed for so long that I feel like I know this baby before it is even born!
Please keep praying for all the mito kids and adults who are really struggling to keep up with the costs of supplements. I know we have had to cut out some, and I know others who have stopped due to the economy. keep their families in your prayers too.
Pray for the people you pass each day that are cold, or hungry. This time of year I just wish I could help everyone and feed them in a warm home. If it hadnt been for love towards us we would not be in the place we are right now. And someday I would just love to give back.
This week I am thankful for my kids and my husband. I am not thrilled with mito but I am thankful that we have an answer and that we are fighting it.
I have been blessed with an entire list of friends that have been prayer partners and just a huge support.
I have many wishes and many friends I want to be with right now and cant due to distance, but I am thankful for the fact I can call them friends.
We have been richly blessed and There is nothing more special than that....
I will update like I said earlier, probably mid month december unless something comes up...

Monday, November 18, 2008 12:00 AM CST

If anyone would like something to pray about I can tell you that we could use a few right now...
Pray that the Dr who was horrendous, ends any relationship with us/Tim. We need prayers regarding this. Praise God we have a pediatrician, hematologist, metabolic Dr and GI team that all have opinions and have been sharing them with us in a united front.

Well in 24 hours, Tim will be 17. I am amazed. We spent his 15th birthday in PICU and the Dr telling us that he had less than a 20 percent chance of surviving that infection. 3 days later Tim was in a regular room on a regular floor. Only problem we have now is every time we see that Dr he says "You almost died in my office!" He doesnt take chances anymore with tim! But its really funny how things have remained the same yet changed.
Timmy has been the brightest spot and the hardest stain! He has brought tremendous joy in the midst of the most horrific situations. To see his fight and to understand what he goes through every day makes you realize how much of a hero he is. Each time I rip tape off his chest to change out dressings on his central line, I hear his scream. I hate doing it but he is brave about it. Each Tube change is painful and accompanied by problems. Every temperature involves a hospital trip. Each seizure involves a ton of energy that is lost, and yet he fights. He fights each day he opens his eyes. He carries around 7-8 pounds of fluid on his back, and has to trust each person who touches him. He just accepts.
In some ways Tim is the lucky one in all of this. He is forever 8. He doesnt understand the bad things of recession except maybe the fact we can't rent a game for him. He doesnt understand worries of home life, he doesnt understand the pain of the world today. He sees beauty in everyone. He sees happiness in simple things. He is just happy to have someone sit to play a game, or say Hello. He may have so many losses, but to all of the people who work with him and know him well, know that he is probably the happiest kid you will meet.
I am glad and honored to be his mom, and to have had the opportunity to travel this journey with him. Sometimes I clear that path for him, and some times he simply blazes a trail for us to follow. More often than not, he blazes!
I Thank God for Tim and for who is really is inside. Of all the things God allowed to happen to Tim, He did not allow tim to lose it all. Tim has the beauty of innocence. There is nothing more precious than that!
Happy 17th Birthday Tim!!!!!

Monday, November 10, 2008 8:11 PM CST

Today Tim went and had his Jtube removed and now he only has a G tube. When they pulled the GJ out, a LOT of very dark blood came with it. The GI Dr about choked when he saw that. I am not sure he really believed he was STILL bleeding.
We got some really bad info about that and we need to do some research but it looks like tim is going into surgery in january for exploring why he is bleeding. I am demanding we wait until after christmas. I just have bad vibes about this one. I cannot have him inpatient over Christmas. This is Tims big holiday...He loves Christmas.
His Thyroid is not working right anymore either. We are working on that as well. We have an appt with Endocrine and will see what we are going to do. It simply does not look good for tim. He is losing functions will all his systems but it is the compounding of the systems that is worse than each system independantly.
He got NEW hearing aides today, they are wonderful. He still only hears about 60ith the aides in, but at least he is hearing. He loves them. The hearign ppl were amazing with him, they contacted insurance and said he needed mini aides. Literally u can barely see the wire unless you look hard at his ears. They are micro mini's. Insurance covered them because he is a kid and needed to be compliant.
We saw the metabolic Dr and he is looking into a few other things for us, but the biggest thing is he is sitting down with a Dr for us, to go over his records and we will be switching to a new Dr that we need. This will replace the bozo that took his care and flushed it! So that is a positive.
Tim is really fragile medically and it is hard to decide what to do to make his care better, vs just to check on things. We need to do endoscopy to ck things, but exploring his stomach may be better. We need the best options for tim, and we need to pray we make the right choices.
his labs were done today so we will see what things look like tomorrow.
In 9 days Tim will be 17, in 11 days Reilly will be 7.
Please pray that they both enjoy their days. Tim is getting so excited about his birthday. It is the start of his celebrating the season. We took down LOTS of christmas decorations and he is enjoying seeing them up already. We will get a tree soon enough and begin decorating that. He loves that part. We have a little 4 footer set up and all our disney decorations are all over it. It looks awesome. All our christmas teddy bears are up and the kids are thrilled by that. I am even playing the christmas music. My feeling is if it givees them joy then that is what I live for. I love to do the little things that cost nothing but bring the greatest joy!!!
Thank you to my friends who have given us so much love the past few months. With out the support we would have simply fallen apart.
We have looked at a LOT of nursing applications over the past few weeks and we have narrowed it down to 3. We have coverage late afternoons and evenings, but need a day nurse. I have had a couple of days a week covered but need at least one more. so please keep praying about full coverage.
Before my computer battery dies, I need to end this,
Please pray for amanda as she is on her final journey right now to becoming an angel. She is in her last stages of mito and her family needs our prayers.
Please keep all my friends in your prayers...Bonnie, Heidi, Malisa,AnneMarie,Kristie, Sophia, clay, cole and jake, Craig and Dalton...all of them need prayers to keep going day to day and fight this disease! Pray for malisa's baby!!! I think its a girl. I have thought that for a LONG time, but no matter what it is, I can say for sure he/she is a miracle and to me represents all the mito angels. Those angels and God gave Malisa this little baby who come to this world pretty soon. Pray for the safety and health.
Ok, Thank you all for traveling this journey with us.

Wednesday, November 5, 2008 8:48 PM CST

I am not going to do a big update tonight, I just want to ask for prayers please.
I am really struggling with being weak, and my right side is very weak. I am having trouble with my gait, and simple things.
My right leg is very swollen, and I have had chills for 24 hours on and off...I had multiple injections yesterday for my joints, and my calf muscle...I dont know if i am having a reaction to them, or if I stressed my body too much. At any rate, something is not right and I am not feeling well.
with the cold feeling I have, it is simply reminiscent of early 2006 and I am not too happy about that.
I have been to the hospital with one kid or another every single day for the past 6 weeks and I am done. I am worn out exhausted and I think my body is telling me/demanding me to simply stop.
I am going to listen.
please pray this subsides soon and I feel more human, and look more human. Dr K and Dr H warned me this was coming...I hate admitting they were right.
I will update on Tims apts later on this week. when I can do them justice.

Sunday, November 2, 2008 6:40 AM CST

Welcome November! I am very glad it has come....with november comes the end of october and a horrific month of medical craziness. It also signals the fact we are closing in on to Tims 17th birthday, Reilly's 7th birthday and mine too but we wont go there quite yet!
Each time we celebrate a birthday with Tim it is a reminder that we have beaten this stupid disease one more year.
We are seeing our metabolic Dr monday and this is the guy who is actively trying to get us to switch Drs in another medical specialty. O I AM, trust me! I am not going back to this man.
I have some feelers out there for a new Dr and so far we are leaning towards 2. One of them is a person who left Mass for another state but was willing to sit down with us and discuss Tim and help set up a plan to follow, but that means traveling to Houston. Good thing is he was Tims Dr before he left Mass and therefore knew Tim well. Then another Dr that was suggested is in DC. I am looking into a couple options.
Anyway on to the update...
Tim is doing better the past few days. Not as many episodes coming our way. We were told we need to switch him from the liquid form of medicine to IV form of medicine. He is not absorbing it either G or J....So we are upset by that. We need to see if there is another alternative, but if not....one more thing.
Not so sure we want to do IVIG again ever, even tho we were told he needs to have a smaller dose so we can keep his immune system working. However it kicks in horrible seizures and mental changes.
The biggest changes happening to tim right this second is his hearing and cognitive. Hearing is horrible. He is struggling to make out words. The school is refusing to help with sign language because they said it is too much energy expenditure. I have contacted a school for deaf who will help me teach him a different kind of signing. Not quite ASL. But said it would be easier to cue him in to topics. Thats something I need to work on in january when the new semester starts.
I am going this week for shots in my hips, and calves. I need to have a combo shot! I need to relax my calf muscles but need to shoot cortisone into my knees and hips. So the MDA Dr has a shot he said would help my muscles with the clonus that I seem to have and getting worse. I also am replacing my old AFO's with newer ones because of the foot drop and also the pain. PLUS I got chewed out for walking until it hurts....ya, he was not too happy about that! ooops.. O, to top it all off, I found out the reason why typing hurts after a little while is because I have clonus in my right arm too. As he said, it just shows that something happened in my brain recently and has left lasting affects. I talked to the neurologist and because my eye still has a small moon shaped blindness in it on the lower bottom/corner, it means I really did have another stroke -albeit minor. It did leave lasting issues.
The kids are fairing well besides this stuff going on. Lianna has begun a new medication that is working awesome for her migraines. Only thing that bothers me is she has complained more and more than taking a shower is hard if she isnt using the shower chair, her legs get shaky and her arms burn when she tries to stay in there too long.
Reilly has his own issues still, he loves his convaid and is in the process of making it personalized! We found out he is looking at surgery but we are trying to hold off for a bit and using alternative methods. But it wont be long before he needs to go in for it.
After one year kris seems to be doing a little bit better with the tummy issues. He has lost a ton of weight but finally remicade is working better. His pain is finally reduced body-wide, and tummy seems to be doing a whole lot better. So now we need to see what we are going to do for the rest of his life....most likely it will remain remicade. Cant stop once you start or you cant go back on it again...so we need to be careful.
Josh is struggling to pay off a school bill so he can start again in january. He desperately wants to start his life and go back to school so he can finish. So close to the end, but cant get a student loan if his life depended on it. Nothing we can do...so he is working to pay it off. he has a big chunk left but he is doing well. He is also doing online classes to help keep him going.
Tim was given a Bass guitar (Red Electric one) from a man at church who knew he wanted one so bad..he just walked up and gave it to him. So cool! He is really excited...
I need to get him an amplifier (or not LOL) so that he can hear it. But he is just thrilled with it.
Ok, I need to end my book here, but I wanted to end with something...

Our prayers are answered not when we are given what we ask but
when we are challenged to be what we can be.

-- Morris Alder

Please pray for Bonnie, Malisa, Heidi and all my other friends.
Please keep Craig in your prayers as he is on his Make a Wish trip right now!!
Pleasepray for all our Drs who need prayers to keep the fight going to find a cure or better treatments for all of us.
Thank you for traveling this journey with us.

Tuesday, October 28, 2008 9:16 PM CDT

I just want to update quickly because to update the whole thing will just get me so upset again...
We saw a Dr today, I am not going to say his name because he is a Dr a couple friends of mine use. our metabolic Dr wanted us to see a different Dr for thsi specialty and we said why change now, we seem to have things ok with this man....uh wrong!
I went in the room with Rod, while tim and a nurse sat in the waiting room. O my goodness....I was mortified with this mans attitude and the things he was saying.
Ok, first thing he said was "well your son has the worse case scenario symptoms and results for this disease and there is not a lot we can do to help you"....o...ok....thanks for the info.
This person was horrible. This person never once opened up his chart before he rattled his mouth...this man actually had the ....AUDACITY.... to say "time is ticking away so is there something that I CAN do that may make a difference?" at that point I decided to shut my mouth because my next comment was going to be, "ya...there is soemthing you can say bonehead....maybe an apology for your inconsiderate and obnoxious behavior and comments"....ARGH!
He is running a couple more tests this weekend, but in his words there is nothing more we can do....
When tim came in the room with his nurse this Dr changed his tune just a tiny bit. Did a few exam things on him and then said he was fine....when I asked if he passed the exam he looked at me and said NO...but yet he said it was fine..so my next question was is he fine or NO...and he said No...At that point I just left and I am sick over teh thought he just told us that our son has a prgressive and terminal disease that there is nothing more he can do...
Ok, I know what he has....now I am know what I am going to do....I am going to apologize to my metabolic Dr and say yup I will see a different clinician!!!!!
I agree we cannot do much, but c'mon...seriously to give up on a kid????? no...I refuse to accept that as a Drs final word!
I am truly sick over this one....
All I thought of all the way home (once I calmed down enough to actually think) was, I am not giving up and I want tons of pixie dust...so I chanted pixie dust about a dozen times! prayers and pixie dust!!! I was worrying that I would be carted away for craziness but honestly now I realize we are fighting this dang disease and I am not giving up and I dont want my son to either....
so please...prayers and pixie dust! Tim loves tinkerbell, so pixie dust it is! LOL...Prayers too....I refuse to give up!
thanks for letting me vent!!

Saturday, October 25, 2008 9:57 PM CDT

The amount of energy that has been expelled in this house over the past few weeks is ridiculous.
I can barely keep my eyes open anymore to do the simplest of things.
I got screamed at pretty good by my Dr when I saw him. Guess it was important to be wearing the AFO's that I have...and even more so that I should be using the wheelchair more often than I have been. I am moving about my house with difficulty but I am tired of sitting! yet now I am tired of moving....actually just plain tired!
My legs are in such pain, and my hips are not far off from that. my feet are stiff and I am dropping my right foot a lot more lately. most of this is because I am simply worn to the limit and I am done...I am going in for shots in a week to my joints and my lower muscles. I have 3 plus clonus below the knees, and my right arm is 2 plus clonus. My words are being lost in conversation and texting or typing is better because I can think before I say...otherwise I am telling people to do very weird things or I am not making any sense at all.
o well.
Onto kids..
Tim.
Tim is struggling a LOT still. He is still having seizure activity daily and is literally blowing up in front of us weight wise. He looks 9 months pregnant. He is so distended, and his stomach hurts from the distention. I am not excited to get the tubes switched out at the hospital in a week because it will just throw his body into a spin again, still, or whatever! but it wont be good.
We have interviewed a few nurses and we have identified a couple we are able to use. Tim is having a struggle because he just about trusts someone and then they walk away, and he cant handle that much more, so we are trying to be very careful how we choose. We have one night nurse who he has known a long while and was a friend long before his nurse, so she has been a great stability for him. But she has a day job and we get her a few nights a week and weekends.
Tims autonomic system is so out of whack right now, and he is not regulating his body well.
We were asked if we regret starting the meds last may, and yes I do regret going up that high, we had no choice. We could have watched him go further down due to bone marrow failure or we could work with the best info we had at the time and that was what we did. I regret the problems, but not that we went ahead with the choice. Life is choices, and we all have to make them. We just do so with the best info at the time.
Tims teacher said on friday she was concerned because he has lost almost an entire years worth of knowledge in less than a month. He had worked so hard and then we lost it.
we got a call from MGH that Tims biopsy done there was sent to genzyme and they ruined the sample! they defrosted it incorrectly, and we are not redoing it. I am not putting him back through it.
The biggest things now are how we proceed. We need guidance and so we ask that you all pray for that. We are looking for the best options and reasons behind them.
I know that Dr K was right when he said that I would be unable to care for tim unless I care for me first. He reminded me if I am not rested I cant give Tim the care he needs....so I am heeding his warning. I promise. Even if the AFOs are not my favorite things in the world, I am going to do it....sniff sniff...
I am getting the shots of whatever it is and will be loosening up my calves and joints. I need to stop the clonus. It just proves I had further damage done recently to my CNS. Dr H is pretty good at figuring out how to slow it down...so I am give him carte blanche to figure it out.
We see many Drs this week for tim. and we are hoping to get to the bottom of some things...
Tim has a few requests....
1. he wants to get rest from the brain "firecrackers"
2. he wants to see his best friend and spend time with him (we are working on that one)
3. no more pain

We have a few requests as well...
slow my body down so I can rest, and also be a mom who can remain hands on.
please pray for mito to get a cure! Go TB Rays. The player on the team has Mito. Albeit a milder form. However it is getting recognition and praying that this man can show people it is a horrible disease and yes he can do things, but it is harder. pray media gets behind the disease and more awareness comes of it. we need a cure.
pray for Mito friends
malisa,bonnie, kristie, kristina, Dalton, Donna, Craig,annmarie, Sophia, heidi and the rest...
please pray for peace and comfort!

I just want to say I am thankful for the new friends we have. I have myself a new fairy godmother (or 3) and Tim knows he has friends who love him too. I have the flexability of a job that allows me to work when I can, and they have been great. I know I cant do anything until february and they have been great about it. God has been great. Everything we have needed has been provided....
please keep praying God shines through whatever comes out of our mouths or out of our attitudes...
To all our friends who have gone this journey with us, thank you!!! to our new friends who have just begun this journey with us, Thank you!!
I will update after our big appts this week...

Thursday, October 23, 2008 8:01 PM CDT

We saw a good deal of Drs today. I cannot even begin to go in to details about all of it and do it justice, but it is not good news no matter how we spin it.
Immune system is starting to go haywire, and his IGM is now on a constant elevation ride, doubling nearly monthly. IVIG is causing him trouble. The problems that we wondered could happen way back in May that didnt seem to be a problem right away, have come back to bite us in the butt. Something has affected him deeply neurologically. We stopped IVIG a couple of doses during the summer months to see how he would do.The problem is now that we have begun we are curious if that is the cause of his increased seizure activity. Also his thyroid has stopped working right. He now is showing signs of Hypothyroidism, however it is looking like another issue as well, so we need to address this quickly. his weight is going up and we are decreasing his calories in TPN plus he isnt eating much.
Neurology said that what we saw last night was metabolic stroke, or could even have been a true TIA, but also he was seizing too. His vitals changing like they did leads them to assume it was metabolic stroke.
He has been very postictal today and also confused. He has been reading school things with a tutor and today she came in at 4pm and began to work with him and he looked lost. When we questioned him he was so confused, and didnt remember any thing we had done the past 2 months. He truly was lost. She said she could see a huge difference and in all honesty he is different. He is very "random" and is spacing out. His pupils are changing rapidly throughout the day and it is not looking normal.
We are waiting on an MRI apt., and blood tests. We need to address a lot.
There is so much more going on, but I just dont have it in me to make it easier to understand and try to explain it..it is too much.
Just the biggest thing is it looks like the mega dose IVIG has caused him significant damage neurologically....and this is just not good...
please keep praying for the Drs to find the answers to make this acceptable.
Thanks for traveling thsi journey with us. I will update as we get more answers that are easy to explain.




Wednesday, October 22, 2008 10:35 PM CDT

still no computer, ugh
I wanted to quickly update because I need to go to bed...
Tim had a SLE (metabolic stroke episode) today. His Dr is very concerned as there have been MAJOR brain changes in the past 2 weeks, and as one Dr said "Tim's body is like a snowball going down a mountainside..he is picking up speed and we cant run a head of him to slow him down to try and fix things."
I have no daytime nursing at all right now and it has left me exhausted. I am working on a day replacement. I do have evening coverage. but by evening I am so out of it I cant function.
as it stands right now, tims pupils are very dialated and extremely unequal. one pupil is the size of the iris while the other one is small like a pencil tip. they change a little when he is on valium but go back looking weird after a short time. His blood pressure during this event today ws 121/99 and his heart rate was 110. after valium and time it went back down a lot. but still fluctuating. He is so confused and when he was out of it today he could not talk or open his mouth. He had it clenched shut. once the valium was on board his body relaxed. I asked if he was having a seizure but he was aware and had so many other changes they said no that it was definitely stroke. Pushing fluids, keeping valium on board, and watching him over night. We have apts tomorrow to look deeper into this and see what will be next. We need an MRI and more ideas of how we can prevent this. ALSO, we found out for a fact his thyroid is not working well. He has they believe hypothyroidism, and this could be messing with his metabolic system so much it is setting off SLE's and seizures. This is the concern of Metabolic and Neuro....
we are all very tired, many apts the next couple weeks and we need as many prayers as anyone can offer so we can find out WHY this is going on. Tim is very tired, and he needs as much rest as he can get. His body is tired and he is simply worn out.
So please keep him in your prayers. And a few for mom and dad would be cool too.
Will update when I have a computer that really works. still in pieces on the table. o well...

Monday, October 20, 2008 7:48 PM CDT

I dont have a computer to write a lot on here with. I am using my cell phone.
things r not going well for Tim medically and we had a care conference with key Drs last week.
Please keep Tim in your prayers, we cant seem to catch up to him as he is sliding faster than we can fix.
Daily seizure activity and brain changes.
I will fill it all in when my computer is fixed. currently in pieces while Rod repairs it....I HOPE he repairs it.
We have been in boston 5 days a week for 2 weeks and 3 days this week coming up. 3 days next week.
really hard on all of us, and I am wearing out fast.
I will update soon as I can.

Fridday, October 10, 2008 7:37 PM CDT

Please pray for our friends Karen and Jeff Whitty. Their daughter Ashley died this afternoon after surgery. Please pray for the family. This is tough.
Please also pray for Josh, Tim and Kris. They were friends with her and her brother, Kyle. Tim is showing medical signs of stress....
We all know this could be anyone of us going through this at this time. It is so sad and unfathomable on so many levels...



Thursday, October 9, 2008 10:34 PM CDT
sorry for the delay in writing, but I dont have a lot of time...I am so tired.
It has been a very very long week with multiple Dr apts for Tim and Kris.
Tim has so many problems going on right now that I cant even do them justice to explain while I am so tired.
He needs to see Endocrine because his thyroid is starting to fail. We also need to have his thymus looked at as well. He is gaining weight fast and blowing up in front of us. 10 pounds in one month. He is not eating a morsel of food more than he was but he has gained. We ended up at Hematology/oncology today as he is severely anemic and he got IV Iron...
also all the problems we were warned about regarding the seriousness of how we were going to aggressively treat using IVIG have come to bite us in the butt. We did not see any improvement but in fact made things worse.
We take him off IVIG during the summer for one month, so he goes 8 weeks between a dose....instead of 4. Well his blood counts were very low, then we stopped the IVIG so he could rest his body, and his counts all of a sudden 3 weeks ago began to improve in some ways...not great but they were better and trending up. Well, this monday he got his dose and his counts across the board fell by over 50 percent. that shook us all up today. and worse part was it only took 2 days to tank his numbers, but 6 weeks to improve them. He is still having GI bleeds...we cant stop it. we are going bak to GI tomorrow...seems to feel like a waste at this point. The GJ tube site is painful...actually on scale from 0-10 tim says it is a 8. He winces and is in tears at times. He is cramping up all over his lower body and that has pain associated. cognitively he is a mess right now. Acting like a parkinsons patient. Having tremors and outbursts. arguing with us when it is a silly thing...being like a two yr old not his baseline 10 yr old...His hearing is an ongoing issue but we are doing sign all around him and he is actually getting some of them.
Kris had remicade this week, and he is working hard at feeling better...does great for 2 weeks..the week after ishard from sickness, and the week before is hard from fatigue and pain....ugh
I am already in pain...winter is coming early I guess. My legs hurt so bad I cannot even walk much in my home with out pain. Plus I am so tired and trying to keep the home going....
through all of this I must say I know God is faithful. I know it could be worse and has been for us. We have lived through no food, and being cold...but we have heat, food and roof over our heads and we are thankful for each thing God has allowed us to have. As much as I hurt for my kids, I am grateful that I can hurt for them and listen to them. I realize this disease could take them in a flash. So I am blessed to be able to worry about them. God has given me the most amazing hubby to lean on. He has worked hours to make sure that I dont have to, so that I can take care of my home and kids. He has been my rock when I feel the rug being ripped out from under me. He is amazing and I love him.
I want to thank Bonnie and her family (Dianne)for the loving emails that I get...and from annmarie with all you go through, you make me love you even more! I want to thank all my D.S. friends for their prayers, especially KS and E at E...you guys rock!
I also want to thank the women at my church for loving us and caring enough to offer help in the home if needed.
My friends are my blessings...Heidi, Chantelle, Donna, Malisa you all have been there for me at each turn through this..There are so may more who do things to touch us daily...I do want to say a new friend of mine sandy gave me a little something that I keep in my wallet. each day I open it up to pay for parking at the hospital, I see it and I remember how much I was thought of...it is sweet...
ok, I am so tired I am getting woozy. I am off to bed. I will update with any new info tomorrow...

Sunday, October 5, 2008 5:06 PM CDT

Sorry it has taken me time to write. I needed time to process things and get my mind back where it needed to be.
I had the most amazing chance to talk with a bunch of wmen this week and also get questioned once again about how I can react like I am....I am definitely broken...I am definitely broken into pieces some days...but I have never been defeated. I refuse to be defeated!
I truly honestly live by that.
Now, on to medical things..
Tim is still having trouble but nothing new so to speak...just losing ground little by little and not a whole lot we can do about it. Struggling with the school over getting him signing supports...they just want him to lip read and talk....but offer no secondary means of communicating. Dr is LIVID to say the least! So we have contacted a few other schools and programs to get the best information for us. LOTS of information!! Plus my friend Heidi is simply so amazing and has gone through this herself and has been a HUGE source of comfort for me and if she doesnt know it already (somehow I think she already knows this), she is loved dearly!
School work is going well and we have been a long while with out a line infection so we have had pretty good cognitive issues.
Kris has remicade this week, and is seemingly able to handle it now. Not as nauseated with it. No more chemo!! If he can do this with out the chemo drug and not build up tolerance, then we are doing well. Now if we can only spread it out some. He is still losing his hair and its coming out in clumps. weird actually because it began AFTER chemo drugs not while on it...so it is not that drug.
Lianna remains ok medically except for the amount of pain meds she has to take to get through each day. her legs are cramping up so badly most days. using her chair a lot on times out, and using the AFOs alllllll the time at night and during days too..so it is hard for her...
Reilly is going inpatient next week for more tests...we need to figure him out!
I am sick with laryngitis and starting to get beyond it now but kids are happy!!! o well..
I am off to finish supper...I will update as soon as I can with info form this week of daily boston trips.

Tuesday, September 30, 2008 4:05 PM CDT

I cannot even beginto explain how hard it is to ride home in a car with your child, knowing full well that what was just said to you was enough to make you cry but you simply could not let it show.
I have known for weeks that Tim was not hearing a lot of things and was staring off into space a lot looking confused.
Today we had hearing testing done because we knew something was up. WITH hearing aides in, at max level, tim was only able to hear at 56percent .without hearing aides in place, tim is reading lips and missing even more...about 20 percent accuracy. Because of the type of hearing loss he has, there is not a lot more that hearing aides will help for. His is SNHL. also he flatlined today on the audiacustic test (sp) and basically it was stated we will not be doing that test anymore because once you lose it, its gone for good. its nerve. he has moderate to profound hearing loss on his left side, and now moderate on right side. It was stressed today to us both, he needs to learn sign language now, so he can master it easier. we boosted his aides higher, but he prefers reading lips and does so with accuracy. but how much longer. all his losses are in the language range of decibles. He is unable to distinguish sounds of V,B,D,S,F,M,N,TH, it simply was sad to watch. The Dr pulled me aside and said "you need to mourn this loss, dont hide it. It will hurt too much" All I can think about is how much more can this kid handle.
We left there and I had him seen at the other Dr. and he was diagnosed as having bronchitis but on the verge of pneumonia, so back on antibiotics again.
There are so many things that I am so grateful for, and so many things I just sit here and am trying to absorb.
I am grateful today that Tim got to talk to his best friend by phone early on, simply by accident! But it touched his heart and warmed mine. and now I sit here thinking what will happen when he cant do that? How long will it be? Just tryin to get through the days news...maybe tomorrow I will be able to handle a little more. As for tim...He is angry, and he doesnt understand why this is going on. He wants it all to stop...he wants to push it away.
So all the way home I let him blast his CD all the way home, and let him sing really loud...because THAT gave him sense of normalcy....
whats next???




Monday, September 29, 2008 10:35 PM CDT

o man...what a day.
Tim did not get IVIG today but Reilly and Kris did.
Kris did ok, but was dehydrated to the point where he needed IV fluid before he could get his meds.
Reilly did well until they went up on the rate...THEN he had reactions. He has horrendous reactions to IVIG. Once they lowered the rate and let him get some extra meds in him, he responded well and the reactions subsided.
Tim is up and down with how he is feelin. He was looking pretty good and then at 6 pm he looked pale, and his legs were purple. He had a temp of 100.1 and blood pressure was wacky. We are going to the hospital tomorrow for his hearing evaluation because things are just not right, and I got the Dr to agree to listen to his chest. He sounds very congested when he coughs now. When he was coughing he got very yucky sounding in his chest and was trying to clear his breathing. We hooked him up to his oximeter and his oxygen sats were at 84 percent. Never before has he gone that low. Once he cleared his chest a bit, he went up to 91 percent and then after having some albuteral he went back up to 98 percent. It was rather freaky. Lasting about 10 minutes for all of it.
Lianna has done way too much the last few week and has had to use her AFOs a lot lately. poor kid is cramping up and her calf muscles just twist inside. It is gross to watch...but the AFO's do help.
I had an amazing time this past week sharing and loving special people in my life. I got to be with family and share in some very special moments...I think the best thing about being around people you love, is the fact even if you place a plastic smile on your face, they can see through it and touch your heart causing he real smile to melt that plastic one away. Being real is very hard to do when you are exhausted or worn down.
One friend said emphatically what I needed....she was right!
I am looking forward to meeting up with new friends in December. One of them has simply been such a emotional support and has touched my heart deeply..I am looking forward to being with her for an evening. Sort of like my fairy godmother moment!
Well I am off to bed...
Please keep Malisa in prayer. Her little baby is growing and we need to pray that little one into his/her momy's arms!
And
Please pray for Bonnie...she is just so sweet. She truly is an inspiration to me and my kids. Please pray for her pain, her infection status and for encouragement to come her way. HAPPY BIRTHDAY BONNIE!
I will update more after our appts this week...

Sunday, September 28, 2008 10:13 PM CDT

Just to let everyone know Timmy is pretty sick, has a fever, and cant breath really well... Coughing and looks really pale. Because of this he cannot get IVIG tomorrw and that is a very bad thing. He really needs that.
will update more tomorrow.


Saturday, September 27, 2008 9:33 PM CDT

quick update
Tim is having terrible stomach pains and needing to be vented more often lately. Also he has had bleeding as well. I got his latest labs back this wednesday and across the board they just do not look well. I am going to need to get a NEW Dr involved because for some reason his thyroid is slowing down. His body is needing another dose of IV Iron. This week we go in for mega IVIG dose again. I hate this stuff.

Reilly was on his bike this week and fell off. He hurt his upper thigh and it was suspected that he broke his leg high up. I was in a panic, with both boys not well, and could not think straight. But we have found out that Reilly's Sed rate is very high, but his bone is most likely NOT broken. It is a muscle that was damaged, not bone.
Reilly is still really having trouble with left sided weakness. He was unable to smile evenly or see evenly this week. He was much weaker.
He is going back IN the hospital for another test on Oct. 15. We need to know what the heck is going on, and hopefully fix it. Meanwhile, we have a convaid cruiser for him coming, and hoping that solves some of our problems.

please keep these two in your prayers this week. I will be speaking with pulmonary and endocrine for timmy this week and cardiology for reilly this week. It is going to be busy. Tim is heading in to his worse time of year. He needs lots of prayers and hope. He got to speak to his friend for a bit this week by phone and that perked him up. He told me that is all he needs...he just wants someone who just cares about him, and not someone who "takes care of his disease"....I get it. He is looking forward to december for Reillys wish trip. Reilly wants one silly thing, and tim wants one simple thing. I am pretty sure with lots of prayers, each of them will get their dreams.
Thats about it for now. I am exhausted emotionally and need some sleep...

Tuesday, September 23, 2008 9:42 PM CDT

Obviously Reilly is in a competition with Timmy lately for attention....Reilly decided to begin with left sided weakness and drooping friday last week...and this week has begun to smile rather awkward. His left side is definitely different when he smiled and talked. his eye was all droopy too.
Neurology is not to pleased with it. We need to watch this closely.
Tim is still very off....GI is concerned that he is still bleeding in his GI tract, and also he is struggling with hydration. Evidently he is still seizing for some reason. We are going to have to work on things next week because this is just too much. GI is upset and also worried about what is going on with Tim lately.
We need for him to improve....he has been sliding for so long now that we need for some improvements not just a good day or a good moment...we need a Good week..
We are blessed to have the family we have, and friends as well. No matter how much we are sick or hurt, we know that God has never left our side and He still holds us very close.
Please keep our mito friends in prayer...Bonnie, Heidi, AnnMarie, Sophie, Dalton, Craig, and Donna, They all have things going on right now and could use prayers to get them through them.

Also, I would like for you to pray for my friend Malisa. She is going to be having a baby!!! We have prayed for her to be able to have a child and now her dreams are reality. Praise God...mito can take away so much, but it also does not stop people from reaching a dream! Way to go malisa!!!

Thank you for following our journey, it warms our hearts to know you pray for us and encourage us.
Until next time...

Wednesday, September 17, 2008 9:43 PM CDT

Lianna is not broken, just sprained. AMEN. This child is a klutz. I thought the boys were going to be dangerous and hurt themselves, but nope...only my daughter. More casts than most boys!

Tim definitely is still having seizures. He was confused today and everything. He began slurring his speech and then was acting weird, then fell asleep. He was just not with it today. I felt so bad for him. Our nurse who was here this evening wittnessed it and knew what was going on. We just let them run their course. It is just sad to watch.
Tim is losing hearing more and more. We noticed today when we tried to get him to answer a question, he could not even hear me call him to ask him. When I asked, he didnt even turn to me. When I said TIM, he went "huh?" it took forever to get his attention for him to understand what we wanted.
One of our Drs suggested we do an MRI or CT scan on the 30th, because the question we all need answered is, is tim having seizures, or SLE's. Right now, the Dr thinks it is stroke episodes, but everyone here really thinks it is seizure. Or it could be continuing of the brain atrophy that we have seen...and if it is that, there is nothing we can do.
Lastly, We simply try to keep him busy and happy. We picked some apples today for school work and we made some apple crisp. He watched us cook, But he did pick some apples.
Ok, I am off to bed so I can get some rest time in before the night work begins.
thanks for following our journey.


Tuesday, September 16, 2008 9:26 PM CDT

ok my son who has the ability to turn me gray, has decided that he could be fine for A DAY...o man, I am ready to scream.
He did well during the day yesterday and then last night he was in pain in his sleep and up a lot with cramping pain in his legs. Then he had TWO spontaneous nose bleeds...ugh, mega bleeds...
He needed an extra dose of medication for pain in his legs and then he finally went off to sleep. On a good side note, I at least got to journal at 2 am in the journal our pastor handed out! I cant say it made total sense, however, I actually did it.
Autonomically he was way off today. His heart rate and blood pressure are off today.. his pupils are not the same size, and he is shaky.
He acted like he had some neuro issues tonight. I dont know if it was seizure or just confusion. But his hearing is off still and I need to get hearing eval done soon.
as a lovely end to my exciting weekend, Lianna fell off a swing and landed on her Hip and Wrist. seriously dont ask how she managed that! But she definitely is very swollen and bruised. If it doesnt go away by tomorrow, I will go and get it looked at. I am hoping she bruied it only, or maybe sprained it, but there is a lump on the side of her wrist that is not supposed to be there, so we will look tomorrow.
We saw a Dev. Dr yesterday for Reilly and found out something very interesting...It is a lot of info and once I get the report I will copy andpaste it in here because it is so involved...but it has to do with all his reactions to meds. It seems the meds that gave him the problems lately, are meds that are in the dopamine and seratonin family...and he has a huge tryptophan allergy. Well....the meds that affect Dopamine and seratonin, also affect tryptophan, and they are in the same pathways!!!!! so the reactions are true reactions and now we know why!!!
so we have to stay away from all those meds... the neuro damage that was done is done...nothing will fix it, but we can help it, or support it.
Anyway it is late and I am hitting bed...I have to be up in a bit to keep track of things with Tim....once we have better stability I will get sleep!

Thanks for checking in with our journey....I will update more later..

Monday, September 15, 2008 9:50 PM CDT

I have a few minutes now to update a positive update!
I have shared, over time, that I know God has carried us through the horrible moments and we know this because we see Him shine through too.
Tim fought us about going IN to the hospital this weekend because he desperately wanted to do the Golf tournament with our church to help raise money for the new church bldg. He told the Dr that he was NOT going in the hospital to be admitted. It was sweet actually....
The Dr said it would be ok for him t go but only if his temp went down and he was seizure free for a day. We arranged for nursing to be there with him ALL day. On sunday I went to church and pulled the pastor aside and told him Tims dilemma. He said a prayer for him to feel better and be stong enough to go. When I got home, tims temp was down, and had begun it the night before during the night, but it went down to almost normal. Direct answer!
By monday morning he was doing a lot better with fever, and seizures were done as of saturday night. So we achieved the seizure issues....but the fever had come back a little. We decided the old saying QUALITY of life, took precidence. He got in a pair of shorts and dressed up and went to the tournament. His nurse was his caddy and he was in a cart. He hit a few balls, and got to take in the whole day. When he got home he had held up well, but his vital signs were horrible. His temp is lower than this weekend but he still has a temp. We have to catch up his fluids tonight, and he has a medicatin on board that makes him very sick, but we are working with that. The biggest problem we have right now is his blood pressure and heart rate. Anyone with mito understands this problem, where most everyone else doesnt see it or understand it. He is running VERY low blood pressures, but heart rates very very high. He tremors with energy output...tonight he is shaking like mad, but I am thrilled he got to do his hearts desire.
So the culture came back positive for staph orious and we need to keep him on the meds for 2 weeks and then w will reculture to be sure it is gone.
Tims hearing is worse after the seizures on saturday. Glad that those are over for now. We took photos of Tim on saturday and emailed them to his Dr, and then again yesterday. It was amazing the difference but it is not baseline, even yet.

So please pray for a few things...
we need to regulate the blood pressure. his numbers are settling in very very low and that is not safe or healthy.
We need to regulate the heart rate. It is over 100 all the time with numbers going over 150 just laying down.
His depression and anger is pretty deep at this time. He misses his friends, he also is done with being sick. He is tired of being sick all the time. He understands what is going on, and he is just done.
please pray that he will truly see that people have prayed for him and that he got to do today because of prayers and because people loved him enough to send people to care for him so he could do it.
We know today was too much on his body. BUT we also know it was needed for his head and heart. please pray his seizures stay away and he rests tonight well. I am going to be monitoring him hourly through the night to be sure he doesnt slip backwards. and also because he needs the meds given too...
O and I should add one more thing, He is still testing positive for bleeding in his G and J tubes. He has been on meds for this but even tonight he is positive for it. And he has had 2 spontaneous nose bleeds as well...please keep that in prayer!

ok I am off to sleep for about 45 minutes and then will get as much rest as possible....thank you to my friends and my prayer partners!!!!!! you guys ROCK!



Monday, September 15, 2008 7:20 PM CDT


Quick update-
Culture results are in....
STAPH ORIOUS
we are starting meds and hope to see improvements soon.
Tim has lost further hearing, and has spent the weekend seizing a lot. We are going to have a TEAM mtg soon with the Drs as we need to discuss moving forward with him. Please pray for him because he is depressed and not feeling well about it.
I will update more later.



Saturday, September 13, 2008 11:20 PM CDT

Ok I see the time stamp here says saturday and I am telling ya that it is really sunday at 12:20 am...I should be in bed, but Tim has been keeping us busy lately.
Tim is home with us. We are waiting for culture results. He refuses to go IN to the hospital to stay. We are dong all we can at home for him. I do not have nursing hours for the weekends, so it falls on our shoulders to do all his care and monitoring.
I want to quickly update tho.
His blood pressure has continued to drop as the day progreses. I just took it at midnight..2x! I had to. It was 135/32 and then it was 129/27 ...I guess it was right the first time. It is an automatic machine. I took mine and it was right, so its not the machine. He is all clammy and cool now...big change from the higher temps earlier tonight. We are hoping results will come back tomorrow but most likely it will be monday morning.
It is scary because Tim cannot tolerate any more setbacks.
We got nervous today because of head pain, hoping it wasnt a stroke, but he remained concious and with us. Although there were many times when we would look at him laying there and realized he was definitely having small seizures. He spent the whole day practically in a post ictal state.
He asked me when I got his last set of vitals, "please let me stay home and will u just make it so I can see my friend. please"....It is so hard because of the distance and the fact I know he cannot do this right now physically...but we are hoping he will be able to in Decmeber.
We have had to stop giving his meds by syringe into his GJ tube. Now he has to have all his meds pumped in over an hour using his pump on his tube. It s challenging as his meds are 3x a day and now it means he is carrying 2 pumps and multiple meds or IV fluids. This is just really crappy progression.
I refuse to give up on tim and thank God everyday that he is here with us. I know God has a reason for Tim enduring this and Tims job is simply not done yet. He has goals he wants to achieve and he will fight, until he can. God has something amazing in store for tim, I am trying to sit back and watch that happen. I had a person email me and say "dont you just feel like God walked away from your family?" and my only reply that I could even come up with quickly was "No, I do not feel like that. I feel like instead of being in front of us and guiding our way, He is carrying us right now and that is why it is so hard to see Him clearly." I honestly truly believe that. We are being carried by God and He is not going to drop us, trip up, or walk away. Obviously when someone is carrying 7 of you it may be more difficult to see them...then it would be if they were directly in front of you....
But I will take the carrying any day!

So ya it is bumpy and I need to ask lots of people to keep praying. God has been good. Tim is with us still, and so are the other kids. Things are going bad in certain ones, but God is in control! We are asking you to pray for Tim over the next couple weeks. Pray for the labs, cultures and his body. Pray for his heart and mind. He is upset and needs to feel comfort. He has a lot of pain and needs rest. So please pray for that.
I am off to bed now that it is close to 1 am. I need to be up at 2am and every other hour for more monitoring.

Thanks for following our journey!

Friday, September 12, 2008 8:45 PM CDT

Ok, saw GI Dr today...Tim has bleeding in his GI tract for sure. Testing that was done indicates that it is in different areas which is worrisome because of the fact he has a central line and a GJ tube that are open invitations for migration infections to occur...the bleeds seem to be abscesses or ulcers in the stomach, intestines and upper areas towards the throat from refulx..
He has been put on high dose meds to coat the bleeds, and we will recheck this soon to see if they are healing at all...HOWEVER the bigger issue is the infection that he has. It seems to be multiple infections yet again. We have cultures pending for the tube site but tonight he has begun to run a fever for no reason (such as cough, cold, flu...etc) This is more scary as we are looking at line infection possible. We are on high alert for grand mal seizure activity. We are supposed to vent his tubes (both G and J) for the next 2 weeks, and check every few hours for blood by testing it. We have to use pain meds for control of his pain, and we hate that.
Because of the fever tonight and the fact he is not looking well, we will be going to the ER especially as it creeps up....
Also for some strange reason he is all distended and bloated. He has gained 11 pounds in 3 months and it has us all on alert that something is not right....we are still looking into things, but we are dealing with emergent issues first.
Ok, I am trying to get some rest before we end up in the ER tonight/tomorrow early AM. We are praying this fever just stops and we are ok...but we are at that weird spot of "do we or dont we go now" but it is a matter of time, and we all need the time to rest right now!!!!
I will update as time wears on..
sorry for typos, it has been a very long day in boston. I was gone for 10 hours straight....I am wiped.



Wednesday, September 10, 2008 9:05 PM CDT


Still have GI bleeding going on. Both G and J sides are positive for blood, and he is very distended asking us to vent both sides. The stuff coming out looks just like redish brown coffee grounds and every now and then we are getting dark coffee grounds.
He is in a bit of pain and just not feeling well.
We went blueberry picking at a place in town, for free today. We just walked around and gathered up left over blueberries....Tim loved it, but he was very uncomfortable.
We are going in to the hospital on friday for testing and to be seen. This can't continue.
Please pray for him because he keeps asking me to please bring him to his friend.
Please pray for him because he is scared.
Please pray for him because when he gets scared he tends to fight us about simple things.
Thank you for the prayers and for following this journey.
will update when we get more info.




Tuesday, September 9, 2008 11:07 PM CDT

please pray for tim tonight/today....
He has been refusing food except small amts every now and then, and he has adamantly refused (even hid) his meds that are liquids and go through his tube. He has been getting very distended and tonight he begged us to vent his J tube. So we did. 8 hours after getting depakote which is a red liquid, we saw red coming out his j tube...but it looked different. I got the bright idea to check it for blood, and it was positive. after about 3 minutes the liquid became little balls like coffee grounds, but red not black. Immediately GI drs were called and we were asked to vent his G tube to see...and sure enough blood....we started a med immediately tonight, and we need to call in the am to report over night nursing notes. Remember, we signed NO MORE invasive procedures. However....he has a hard lump in his belly around his naval and is complaining his balloon on the GJ tube is hurting. GI Drs are afraid the infection that was colonized could be active and growing, he has irritation around his tube, an ulcer, or lower GI bleed that is migrating back up into his gut. No one wants to put him to check because that is a BAD thing for him...but we may not have a choice.
He asked me tonight about 15 minutes ago, "mom no matter what please dont make me stay in the hospital. I just want to be home. Mom take me to see my friends and forget what the Drs tell you...I dont want to go"...So please, pray. he really wants to be healed versus check on what is going on....the scariest part of all of this is his blood work came back today and he has inflammatory process going on and his body is struggling.
So please pray for him. Pray they find the source without doing surgery or invasive testing....Our GI dr is agreeing with meds and watching this closely without testing invasively but he said we have a short amt of time to see improvement. If he is still bleeding in 48 hours our window of waiting and seeing will be shut....
please pray for Tim.
Thanks....

Saturday, September 6, 2008 9:20 PM CDT

This afternoon I updated a long update and guess I lost it in cyber space...I am too tired to even retype too much but I want to update that Tims pulmonary appt was really bad. we may have to go on Oxygen or oxygen and external ventilation. He has about 60 percent lung capacity, and about 55 percent of that for volume...I am not sure about all the particulars yet as they are doing more testing, but he is having diminished lung sounds, diminished breaths, and some other issues..although his O2 sats are ok for now. He does Desat a bit, but rebounds at least. We are doing more to see more answers but so far it is not looking good.
We are also looking into a cough assist to see if we work the muscles a bit if we can open him up more. It was written up and discussed that "tim is having loss of muscle, both smooth and large muscle groups that are affecting major organs". I am not sure what the final outcome will be, I will be talking to the Dr in a week after some tests come back. But for now the plan is possible O2 and day/night external venting (CPAP was useless) as needed when ill, fatigued or under physical stress. Hopefully we will have a better handle on things when all the tests come back.



Thursday, September 4, 2008 8:26 PM CDT


I am not sure where to begin...
Everyone has something going on so I am going to try to do my best.
Josh is working online doing E classes from home. He needs to keep it going but without going bankrupt.
Kris is losing hair like crazy. He had such THICK blonde hair and now it is paper thin and changing color. Ths is so reminiscent of Tim starting his decline 4 years ago. He is still doing remicade and just cannot get beyond the 4 week schedule. They were trying to get him to 12 week intervals...no such luck. Plus each time we go to the Hospital he is dehydrated and needing liters of fluid. It is also not good that he has lost over 30 pounds in a short period of time. He is literally below what he was prior to treatment.
Tim is losing a lot of musclce for some reason. We have PT 3x a week and instead of building muscle he is losing it. Also whatever he eats is coming out around the tube. So that is fun. We went to the nutrishare conference as it was in Boston. We had a wonderful time. We did duck boat tours and had a dinner cruise...Tims Drs were there and we got LOTS of answers to questions, in a very informal session. It was nice to get more info like we did. however the info was not positive. Todays apt was just more frustrating. It is hard to watch this stuff go on and realize even the Drs cant stop it.
Reilly has now been diagnosed with one more fun thing...we had tried him on a medication and he reacted VERY bad from it. He began Tics, motor and vocal. He also is melting down, adding it to the autistic things he has going on and ya, it is not a good mix. I feel sick over it. He is struggling so much, and they want to use new meds to help him, but I am refusing them. Our neuro agrees it is probably better to work on things with out meds for now, but said not to deny them all as we may need to. Reilly was so sweet and loveable never a hard baby or child. No terrible twos or no tantrums, He was a cuddle bug and just alwys the one who was willing to love another person. Now he is melting down, bolting from situations that are stressful for him. He needs so much hands on care right now, that I am getting even less sleep. Plus I am doing almost all the work in the house at the moment. I have been right out straight.
Lianna is very sore right now. She just had a huge breakout of excema and it was very painful for her. We have her on steroids because nothing else was working. She is finally improving on it. One of the lab tests they did on her last week when she had to be seen at the pedi dr. was test that shows not only what is going on in her body but the fact that she has enzymes that are very high indicating her muscles have a high involvement. Her headaches are also back in full force, but we are seeing patterns now and need to go back to neuro for that.
The kids are back doing school and they love it so far. Tim and Lianna will be doing a co op one day a month. It was a choice I had to make because lianna needed higher level science and this way it is being provided and I am not worrying about medical interfering. Tim will go as well.
..which leads me to another thing has come into my life...a "fairy godmother" or two. She sent me a present that really touched my heart. and I am going to spend some time with her and another woman soon. I am looking forward to resting with friends and just being who I am...
Trust me, I am looking forward to being with some new friends and finding me....if I can.

Well I am off for now...I will post more after the next few apts are done.

Thursday, August 28, 2008 8:43 PM CDT

Update:
Tim had his stitches removed and the line examined closely. It is dented. It literally has a dent in it. I looked really close at it and it it totally dented!!!!! This may explain why the line was so sluggish since it was placed. Here I am doing TPA each week and nothing was helping...ugh.
We shall see what the outcome is in a couple days...it may fix itself but it may not too. I hope it does because it has been difficult to work with the line like this.
I will update with info if things chnge.



Wednesday, August 27, 2008 8:26 PM CDT

Tim is heading to the surgeons office in the morning. His line has a stitch on it still so he could adhere the cuff inside. The stitch was looking fine, and then 2 days ago I noticed one section of the stitch moved a bit and was "cutting into" the line a bit. I was concerned and cleaned it really good took a photo and covered it all up. Sent the image via email to the surgeon and he agreed the stitches have to go. We are worried that the outer part of the line may be nicked now. So we need to see him first thing in the morning. The absolute biggest concern of the whole thing is last time we did anything to him he bled a ton, and also had set backs even for a minor procedure. plus the fact we need to have this cuff adhered so it wont migrate out.

Reilly is really struggling with the neuro stuff. He is improving a little but boy this is taking so long. He is trying to just be himself but it is really a sad thing to see him hurting like he is.

Kris has an apt next wedensday to figure out what the deal is GI wise. He defintiely is not doing well..

Lianna is still complaining of her shoulder hurting her. When I spoke to the Pedi Dr, she said it sounds like an impingement and to see if it gets better as time goes on, but if it hasnt improved in 2 more weeks, we will do more testing.

we have started school this week. We are working on getting things organized and figure out what needs to happen and when. Lianna is doing 7th grade things even though she is 6th grade....I am going to give her the stuff but she will be allowed to take her time..but she is ready.
Tim had more testing done and even with all the intensive work we did last year and even this summer, no improvement took place. What really kills me is his IQ says how poor he is, yet he is able to converse at a higher level. This makes no sense but then again he functions emotionally like a 8-10 yr old. A friend of ours who deals with mito suggested a special clinic that could ck into for more involved spaech and language, with the hopes of finding ways to get him to communicate better and understand better. We are looking in to that now.

We have a big conference this weekend with our TPN company, and I am soooo looking forward to it. I cant wait to get the up to date latest info and see everyone. It should be a nice time.

Well hopefully my kids got the memo that mommy wants to go to the beach this weekend and relax...mommy wants to spend saturday just chilling out and catching some sun rays while listening to the waves crashing. o ya....that is my hope for the weekend. Do I expect it to happen...nope...but one can hope right?
I will update after all he apts this week are done or if something happens...

please keep praying for my caringbridge friends...

Monday, August 25, 2008 10:01 PM CDT

Blood pressure is back to low normal for Tim. The Valium worked for the seizure and regulated the blood pressure too. Can't complain!
I had to laugh when Tim asked me last night why I worry about him....I said "gee I have no idea why!" yup he is a guy.
He is having breathing issues now and honestly looks bad. We are not telling him things look bad but he did say tonight that he didnt feel right. Not having seizures anymore that we can tell, but he looks off. And very weak. He is tremoring a lot and is unable to walk much from it.
We sat and talked for a bit...he had his head on my lap and said how much he misses his friend E...I know he does, and told him he just has to keep working hard to stay strong so he can visit him. He needs to go back an do IVIG soon..I always worry when he has to do that because it is hard on his body. He suffers so badly from it. His blood counts fall dangerously low and we worry. But we have to do it in order to keep his infections low....

Kris is lying to us...he is so much sicker than he is admitting...he has lost a ton of weight and looks absolutely horrible. He has an apt with GI soon and we will see what comes next.

Reilly is still not doing well neurologically. I am trying very hard to work with it and doing ok, making some progress, but he really is having tics and fears. poor little guy. He was my smiley guy and always loving..now he is withdrawing....ugh....so trying to work with things.

everyone is asking about my eye and vision...sad to say I still havent gotten back the lower left corner of the eye. Almost like a banana shape of black...but I am able to drive and work with the kids..just more annoying and frustrating. I also have had a migraine the past couple days and those are always a loved thing!! NOT.

The new van is working well....sales tax in mass is a killer but its paid for now, and I am able to drive it. I wont lie and tell you I am ok driving it...I am not really but I am getting better...
there are some days I really am glad I had a stroke back in 2005...I forget feelings so easily and honestly cannot remember the other van because it is totally out of sight and therefor out of mind! I also have forgotten the accident except for the sound of liannas screams. Those I remember.
School starts this week and I am thinking about holding out one more week... we did some stuff today but I will wait a week to jump in. I love homeschooling, and this year will be more fun. love the Jr high level stuff...

well...I am off to go check on tim and hopefully get some sleep...

please remember caringbridge families...pray for them and carry them in your heart....
I will update when things change..

Sunday, August 24, 2008 7:29 AM CDT

Ok, last night was a blast....up every hour double checking Tim and his blood pressure...way funky numbers. We had low low, and then we had weird like 155/40 and others that were equally weird. This morning he got up at 6, and proceeded to have a seizure on me. I had to get the valium and give it to him...so now he is knocked for a loop. Post Ictal is so interesting....And we are going to attempt to go to church. this should be fun.
Rod, Josh and Kris are on a mens campout from church and I am with the 3 younger ones alone. SO I am NOT having fun yet.
ok, off to the shower and then hopefully church......


Sunday, August 24, 2008 12:09 AM CDT

Ok, just want to update that things are not going well with Tim tonight. His blood pressure has gone crazy a bit. He got very overheated today which leads to autonomic instability...but this seems like more than just autonomic. I just hooked up extra fluids to him trying to raise his BP up a bit...it is currently 85/42 and that is TOO low. Will update if someting changes for the worse.
Reilly is in pain and crying...but Lianna has passed out nicely for the night...PTL for melatonin!!




Friday, August 22, 2008 7:46 PM CDT

well, my eyesight has not returned back to normal, and I guess it is something now I have to learn to live with...my ability to walk distance has gone way back to the way I was in 2005...not good...but I am trying.

On the kid update front, Kris is having MAJOR issues creeping up. He has lost a LOT of weight and has now begun to lose his hair. It is coming out in clumps. This is very much exactly how Tim began his rapid decline. We are going this week to follow up with the Dr because everyone is very worried at this point.

Tim is declining like only Tim can....We are utilizing more and more nursing hours, and just keeping him focused on things. We are doing a lot of organized school things with him this year so he can feel like he is normal....I signed him and Lianna up for Co op one day a month, for the year, and he will have his nurse with him going to that. Its one class for 3 hours, and I know he will enjoy being out with everyone there.

Reilly is struggling BIG TIME. I cannot even say how much it is hurting me to see this go on....The Neuro Dr offered to put him in the hospital for a week while we get him off some meds because he has reacted so poorly to them. Neurologically he has declined a lot through this...it is sad to see...Our Dr believes he will revert back to his normal self in a while, but we need to get the meds out his body completely.

Lianna is still sleeping on my floor in our room..she is never going to be able to be alone again...at least now she is able to ride in a van...it took a while but she is getting better at it.

speaking of vans, insurance settled on a price and we got our new minivan \0/...we will be indebted to Honda for the next 5 years and we may not eat until then, but we have wheels that will be perfect for getting to and from the hospital safely....also now I can go back to work when it is available...I am still weighing options on that. one week every couple of months is not perfect but it does help when we need it.

please pray for my friends with Mito...
please pray for my brother and sister in law and my nephews and their families. They were involved with tropical storm Fay in Florida and they got the flooding. Please pray that they remain safe, and sound...please also pray for all my firends in Florida that were affected as well.

until next time...

Monday, August 18, 2008 10:13 PM CDT

I talked with MY neuro today and we discussed what took place this weekend at length. He agreed that I need more fluid, more nutrition and more rest.
I have only been able to eat one small meal a day since the accident because of the whole thing that took place. I am not eating out of stress. I cant eat much at all.
He also stressed I need to reduce the stress my body is going through. His words were "find your happy place and go there!" we talked about happy places and he said if cleaning your house gives you peace, do it...if sitting on the beach gives you peace, do it...if laying in bed gives you peace, do it...in other words whatever I find comfort and can de stress, I need to do it. My blood pressure today was extremely high and my heart rate is high. He said my right side is weaker than the past because I have nothing left in my "tank" and my left side is now affected because my left has compensated so long for my right...
anyway, I am still having loss of vision in my left eye in the bottom corner. My face is still a slight bit numb, but better today. I have fatigue but I did do some normal stuff today.
It has just been a very tough month, and I will be happy to see September come...and anyone who knows me knows I HATE the fall months...so to want the summer finished is a real tough pill to swallow....


Sunday, August 17, 2008 6:24 PM CDT


friday when I was not feeling well, I called my PCP and spoke to her about how I was feeling. She told me to rest a bit and keep my stress down. This was "not lookin good" in her wods.
I tried.
had to go try to get financing on a van because were are short by a bit, so that was stress. Dont see that happening..
I decided I was going to do my normal sat. routine with reilly and sit at the beach while he and his friends played. But I was over rided and told I had to go to a function..."it would be good for me". My body said no, my mind said no, and I knew it would mean disaster for me....
it was...
at 6:23 last night I had a SLE.
Neuro confimed it and I honestly can't deal with much more stress. It is killing my body.
My left eye is numb, the lower 1/4 doesnt have good vision at all. My cheek is numb, and across to my ear.
I am seeing fluttering images in my eye still, and when I stand up too long I get shaky and weak. Not slurring speach anymore, and my walking is slow but there-albeit shaky.
I have tried 3x to update because my hands are not working in unison yet.
I need to follow up again tomorrow with my neuro in Boston, and pray my symptoms go away. The Covering Neuro was pretty good but I am looking forward to seeing my dr.


I am ending this now.

Wednesday, August 13, 2008 8:09 PM CDT

Ok, have you ever had a time when you simply cant explain how you feel? I am there...
everyone who knows me knows that when I am just needing a break, I need to sit down near the ocean and have my music. Its been raining so much, that I havent seen the ocean (except the one that I swear is growing in my yard)and then today the sun finally came out after 9 rainy days and I was in the hospital!...ugh...
I listened to music in the rental van, and I cried through it. I simply cannot explain what is going on, but it is all just very emotional...
Reillys appt today was just one more reminder that not one of these kids can catch a break and it is my fault...
Tims Dr called and she and I spoke for a long time. Tim does have an infection, but not where we thought. We ned to investigate if we choose to, but then it goes against what we just decided for him, together. He has air bubbling out his Jtube. We have had to vent him and he is draining light colored blood/bile and bubbles. There is not supposed to be bubbles coming up....actually we were told by GI that the J tube fluids are rushing downward, not supposed to come back AT ALL...but we are....his G tube is not venting anything. He has gained a LOT of weight for him (5 pounds) and its not from eating. He is very distended. The infection he has is definitely viral, but why did it completely shut his GI tract down and will it start up again? It seems like it will because some things are moving, but it is so extremely slow.
Kris went in for his IV and once again was found to be dehydrated....seeing patterns that are killing me.
If it wasnt for the love of my friends right now, I dont know what I would be doing.
I am going to end now because I just dont have much left in me for writing....
thanks for praying! We really do see the hand of God in this, we do know HE is there....just momma is really exhausted and in shock still, plus sick....sorry..

Monday, August 11, 2008 10:42 PM CDT

Monday PM update...
So far the cultures are negative but we have to wait out the 5 days. Tims temps are falling very low and becoming very autonomic in nature. his CBC and other tests came back again after todays lab draws as being "off". When I asked about what OFF meant, I was told basically it was very different from Tims normals...doesnt tell me much.
His oxygen levels have been consistently low for a week now, and his lung sounds are diminished in the lower lobes. No pnuemonia, but the question is lingering if he is using his lungs enough or, can he? We are waiting for a Pulse Ox that he can wear day and night. He will fight that, but we can at least travel with it and have it at our disposal when we can fight him. He has had a l ittle more energy today and he was grouchy. That usually means he is improving, but cant be sure. We do know that when we vented him the other day we got blood out of his j tube. We had it tsted for blood and it was positive...so tim is bleeding somewhere in his intestines. We NOW have proof of it. The Dr is fully convinced after today that Tim has a viral infection that shut his entire intestinal tract and stomach down and now we just need to pray that the normal bacteria in that area is not going to translocate to his central line. THAT is what happened last time and almost killed him. so we are watching that very closely.
lots of gloves, sanitizer and masks are being used around him!
I still have a cold going. throat is sore, coughing, sneezing...lovely stuff..maybe being soaking wet for a couple hours while pretending life didnt exist, is what got to me! o well..I wont complain! LOL...I will update as soon as we get preliminary blood culture results tomorrow...






Sunday 5:30 PM update

The Dr just called with preliminary results and his blood work is showing signs of infection. They just cant tell yet it if it is bacterial or viral. So we are waiting on some more specific lab work to come in. Right now they are not starting any meds because there is a concern that it could be something that if they use an IV antibiotic on, it could make it worse not better. In this case waiting an extra day may be better than jumping on the medication bandwagon...If any culture grows positive over night then of course the trifector of meds begins and we will go on our "cruise" at tufts for a couple days. His gastroparesis is definitely caused by something going on in his body, and they are working on figuring out why.
And now MOMMA is sick...ugh, cough, sneezing, cold...lovely. Stress generally causes my body to get sick.
I tried to walk a bit today. I cannot even make it beyond my driveway with out being exhausted and burning. I am hoping this ends fast...I need my energy back. on a side note, my stroke symptoms are very prominent right now and it is hard to use my right side and coordinate it. It is getting better, but it is very obvious I am weaker...I will update if any more news comes in tonight.



Sunday, August 10, 2008 12:33 PM CDT

Ok, the update on tim is this...
Dr thinks it is a line infection that is smoldering on him, and we have been at the ER and done Blood cultures. He has a lot of Peticheae ( some day I will learn how to spell that word) and hs lungs sounds are diminished in his lower lobes. He does have "gut shut down" and the theory is because of an infection. Plus we let his tubes vent to gravity and he lost a lot out that way and it was very red/orange. The other problem is he is positive for blood in that fluid today. Now..the plan of action is this..we are home waiting for culture results, and I have oral meds here to start when we know what is going on while we travel in to the hospital for admission...he flipped out over being admitted today so they are letting us wait this out at home. They didnt want him as upset as he was as that would not have been healthy for him either. We have TONS of IV meds here that we can begin and not alot that will be done in there that cant be done here...if the cultures prove positive we will be at Tufts as soon as we know, for the typical admission which now fondly call the "cruise"...(called the cruise because the hospital for children is called the "floating hospital for children at tufts medical center) We would stay ther until cultures come back negative then we would come home on meds....BUT to be safe we did cultures today and we are going in tomorrow for repeat cultures....Our Dr was funny...He said "Tim you sure you dont want to spend quality time with me?" and Tims reply was "not particularly....I want my blanket"...Poor Dr Flores! dissed over a blanket. We will get the preliminary results soon, and go from there..
Meanwhile I am trashed exhausted from the emotional week and it is taking its toll. I can barely keep eyes open, then midnight comes and I am wide awake...pain meds are making me sick so I stopped taking them and now the pain in back and neck is really bothering me a lot....but I am not sick anymore...a rotten cycle!
I will update as soon as we here the preliminary reports.





Saturday, August 9, 2008 6:48 PM CDT

Quick update about Tim...I am going to be going to the ER in Boston with Tim. He has a temp but his face is shiney and very pale with red cheeks. He isnt in pain tonight, but he obviously has something going on. He doesnt want to go, he knows he will be admitted, we may hold off for a little while longer but he definitely needs to be seen. PLEASE PLEASE say a prayer that this goes away with no big problem. He has no energy and has laid down for 2 days now without moving. Something is very wrong.


Friday, August 8, 2008 10:45 PM CDT


Ok, I have to share something really funny...well not actually funny but in the grande scheme of things, it is humorous....in a sad sort of way...
Our BIG news of the week and the thing that we were surprising the kids with was, a real live rock concert. We literally were taking all the kids and a nurse to a rock concert...bruised bodies, aches, pains, post traumatic episodes and all, we were on our way!
That is when mother nature hit...I have honestly NEVER seen hail the size of mini golf balls...o man that was something! Also, we got to see rotating clouds....saw rain like I have never known could come down in one minute, and wind whipped up so hard. Well, that would have been really bad if that was all that took place, BUT did I mention the rock concert was OUTDOORS!...
ok, I am always prepared for the worse case scenerio...I had my mickey mouse ponchos, and 8 umbrellas....guess what...that didnt work! we were soaked to the bones.
God and I had a little talk and I was looking up at the sky saying I know it needs to rain and I know things happen in life, but I only want to get through the first half of the show and let Timmy see this group of guys that he honestly feels he has a connection to. Even Lianna wanted to boast how she had been practicing on her guitar and learned part of a song...but at teh 3rd song and lighting hitting around us, lianna completely fell apart and had to be taken to the car. She was in full panic mode, shaking and crying....thunder reminded her of the noise of the crashing car. Stage lights flashing mixed with lightening got her scared at not knowing what was hitting next....Reilly demanded we stay put to hear the music as he screamed "ROCK ON DUDES" and danced in the rain...Timmy was drenched and I kept him covered the most!
At the end of the 4th song, I could see storm was getting worse and finally felt like maybe the night was ending far too soon and we would not get to meet the guys...but I kept looking up to the sky saying aw cmon...just my song...please just my song.....and the next one, and last one was MY SONG...ahhhhhh the night was not a loss...for the first time in a week the flashbacks were of first dates and thoughts of school days. I was dripping wet and coughing, but I got every word right and saw Tim beaming from ear to ear as he sang away...even reilly was singing. Lianna heard the song from the car and was singing in safety.
They had everyone head for shelter after that song and Tim was getting so weak, we decided we needed to get him to the car and see what would happen. We waited a bit but realized it was too dangerous with a medical pump to be out in a storm like that. It is connected to his chest!...so we drove a bit and hunkered down. Tim was drenched, he was coughing and shivering. He had enough....but he was so happy to have done what he did. He wished he could have seen them and talked to them, but it got dangerous and we had to pull rank...its ok...there is always another time we said....
Tonight Timmy is sick with a fever, and his stomach is totally shut down, no sounds at all. He is bloated up and having horrible pain. He said "mom everytime I miss out on something and then feel like this I feel like I will never get to do it again, promise me mom we will"....my reply was I would promise he could do SOMETHING like this again, but next time no tornado warnings or hail...he said "o ya, without that!"
I have about 2 pictures that actually came out, and the recording of my song....it was distorted from the rain, but really cool because the crowd was singing with them and that is what you can hear....
Saddest part of all was it was a gift to us...I feel horrible that it didnt all go as planned and lots of people put it together to go off without a hitch...I feel like a bad mom for leaving..and I hope Timmy gets to try this again...INDOORS. (mommy hopes to do this again too...)
Like I said, I got to hear my song...got to go back in my memories, and got to see excitement in most of my kids (minus the one hiding in the car) and realized the horrid reality of the week was replaced at that moment.
O, I should mention the song...cant fight this feeling anymore..the band..REO Speedwagon....(so close yet so far ....ugh...can I cry now..)
The reality of it all is, if my kids are happy, then I am happy and they were..after all, it is always about the kids. plenty of time for me later on.
Thank you K, you are so sweet and I am so grateful.

Please keep praying for Timmy and his fever tonight. His pain is pretty bad and he has been medicated for it. He is also venting the tubes to see if we can help it along some. If his temp goes higher we will go in to the hospital, but it is not that high yet.
Please keep praying for Bonnie getting home. SHe had a long trip and her health remained solid while she did it. Thanks for keeping her uplifted.
Please keep praying for Lianna and her fears of cars, noises and being separated from me. I am not a lot better than her but I can at least rationalize it all..

We found out the insurance company is working out details and we should have an answer by next week on our replacement vehicle....pray for peace over that one!!!

I will update after I get a good nights sleep...very emotional and trying to settle my mind down....after all I am human......at least that is what they keep telling me.

August 6, 2008 10:30 PM CDT

I just wanted to let everyone know that Lianna and I both are still in lots of pain, but we are starting to moe a little better. Lianna saw the Dr again and has whiplash, shoulder and back strain, and burn on her arm from airbag. SHe is definitely dealing with Post traumatic stress disorder. She wont leave my side at all, but its ok..I am not sure I want her to.
I have aspiration something or other things...basically I aspirated the dust and debris from the airbags and it irritated my airways. I am coughing up sulfur tasting stuff and my xray shows inflamation but not infection yet. Although I have a fever. My neck and back are very sore. My hip hurts from the seat belt. I have had pretty intense panic attacks the few times I tried driving. Took me 3 hours to go to boston. I had to stop every 15/20 minutes in order to breathe and settl my heart rate down. WHen I got to the hospital the Dr said I needed to know I had PTSD as well and I need to keep driving but take it slow, because doing it too fast will make it last longer. So drive a bit each day. I did better today, but not great.
Tomorrow we are going out as a family. We have had plans for a few weeks now, and we need to do this.
Tim has a problem now...lots of seizure activity and now he has pain on the left side of his chest/under the arm. Same side as his central line. He says it is painful to touch, and feels sharp. nothing is palpable, but the surgeon said if nothing appears by friday we can assume it is nothing, but watch it closely. Could be an abscess or an infection brewing....could explain the seizures.
I am falling asleep but I also wanted to say that the insurance called today and deemed the van a total loss..I finally went to look at it. I had to sign a bunch of papers and turn the keys over. I literally cried over the fact I lost the van. sense of absolute security is gone. I am a mental/emotional mess over all of this and it was a very hard day....I saw the inside of the van where Lianna sat. I am just shocked. I am so glad she is alive. And glad she is not broken all over. I saw the backseat, or what was left of it. To think of what kid generally sits there is just heart wrenching. I am trying very hard to come to grips with it.
I briefly lost conciousness during the accident and I am losing a lot of my memory of it now...I know what I know, but lots of it is a blur now....when I saw the van it brought back some of it, but not a lot. Dr said it is a safety mechanism that your brain does. Guess I should be glad....
Anyway, I need to go to bed. Long long week...

I will updat if anything new takes place...





August 3, 2008 8:33 AM CDT

I just wanted to give an update quickly because I have had so many phone calls and emails.
Yes the van is totaled, and Lianna and I are doing better physically although were still are in a lot of pain. The very first man to help us at the scene was the driver that witnessed the entire thing. He told me that he pushed at my van with a few other people to send it back on all 4 tires. I didnt know people pushed it back I thought it just ended up back on the tires from momentum. I also heard that the man was driving and hit me going at least 40 mph and I was not moving barely at all, maybe 10-15 as I had just taken the turn on to another street and had just touched the gas pedal.
Lianna and I both have mulitple bruises and bumps..more bruises today popped up...go figure. I have back neck and head pains, plus where the belt goes over the hips hurts a lot.. Lianna's ribs hurt and she definitely has more marks from her seat belt. she is complaining of intense back pain on one spot and we were told she will be going back for more xrays monday. Her seat was twisted from the impact on her from the car. It was her side. I can only say what we were told...they seat belts and that van saved our life.
I know so many people said "it is only a van" but I need to tell you that it wasnt just a van. This was the very first thng we had we could be proud of and something I babied far too much. kids got angry with me when I would make them help me clean it out (ok so it was daily) and I was forever washin it. inside was in mint condition and it was just something that made us finally feel normal. For once Tim coud ride in warmth or comfort...for once we could go and not worry about breaking down. and more importantly (ok not for me so much but for the kids) they had a way to be entertained. Navigation system actually helped me during the times when I would try as I might but not remember how to get somewhere. It gave me security.
Right now I am simply excited that the boys were home...anyone in the back seat would not have survived. I am glad Lianna is here in bed with me and she is talking. I dont think I will make a good passenger ever again...I am not sure if I can even drive again from fear...but I need to. Lianna wont ride on the side of a car, she wants the middle..so I guess our next car nees to be a 15 passenger so all my kids can have center seats. ..maybe I will feel better then.
ok, not realistic I guess. As we get better and feel more normal I will update.




Thursday, July 31, 2008 8:56 PM CDT

I figured if I didnt update pretty soon I was going to have people writing me and making it impossible to live through another day with out doing it...so I am....
The past few weeks have been pretty intense with diagnostic testing on Lianna and getting results for Reilly.
I will start with Lianna....
Went back to cardiology and yes she does have a murmur. Her heart is looking good and not enlarged. Her problem is not the heart being defected, it is in the blood supply...I didnt listen to much beyond the typical "this is autonomic in nature and she has to incease her fluid intake a lot plus take meds to correct it"...evidently it will not correct it, but it will put a bandaid on it. THEN we were told her fluid needs to be increased by 50 percent. She is taking in a lot but she still shows dehydrated in her vital signs and is concentrating her urine. We hve kept a running list of fluid amounts for neurology and metabolic, now we are told we need to add a lot more to that number...she is unable to go much more...Then the Cardiologist suggested a gtube to use fluids over night. I put my foot down and said NOPE...he said we could do NGtube to see if we could work it that way, but I dont even like that idea. We also have to go see GI because she is having trouble with tat stuff too, but not nearly like her brother...cardilogy spoke to metabolic and if we cannot increase her fluids and correct the murmur and the dizziness she is having, we will have to go up on her meds to hold more fluid in. She is on Florinef to help with that but even with smart water and gatorade she is not holding in enough fluids....
THEN
Reilly went to Neuro....we have a firm diagnosis between 2 Drs (developemental ped and nuero) of PDD. He also has ADHD (ya think?!!!!!) and he defintely has left sided hemaparesis with physical activity that causes stress, and medical stressors. His myelanation in the brain on MRI shows them that he is probably about 4.5 yrs old -5 yrs old developementally, yet he has strong verbal skills...he just acts like he is about 4.5/5 yrs old...We were encouraged to use tight clothing and snug holding to give him the security that he is needing to get him to be able to experience the world and things around him....He thrives with being held. He likes strong hand holding. He likes to be picked up or to hang on people. He needs to touch everything in order to fully experience it. Which can get him into lots of trouble if he is not supposed to be touching!...so sometimes he needs to hold things in order to experience other things. Always been that way. He cannot sleep unless he is practically stuck to me. ya so much fun...so the idea is if we have a form fitting vest on him or put him in a 5 pt harness stroller when he gets antsy, then that will help him feel secure and happy.
Also all the lab work that was done when he was inptient in may has proven that he is doing well on 100 ounces of fluids per day. We did strict Ins and outs and they final outcome of it was that he is taking in that much to get rid of matabolites in his body. Also he has lost 4.5 pounds since march, and they are concerned about that. He has started having terrible stomach pains again and we have to figure that out....
Tim has had a tough week...had 2 days of NON stop seizure activity. Even our nurse was tired after being here for 9 hours and trying to work through it. The second day was better but it was literally 48 hours of activity...we have had a day now of real calm and quiet and finally we are able to get some rest....spoke to neuro today and he suggests just letting them happen and use valium. It is not hurting his brain by not stopping them, but it is hurting him metabolically...it simply stresses his body.
He is having a lot of distention and also his blood counts are very out of whack. Somehow his CO2 in his blood is way too low, and we cant figure that out...and his cholesteral level ON LIPDS in barely there...it is 70...then we found his protein is low again, and his CBC is all out of whack..the only thing that is looking positive is his PLATELETS finally...they are at 74, and yes it is way too low, but it is stable at that number for 3 weeks now...so we are happy. now to figure out the other numbers.
Kris is doing better after a HUGE scare start of week, but now he is doin really well. He is with a few guy friends at Soul Fest and they are having the time of their life...Rod is stuck in a tent with him, and he called to say that he has never seen Kris so happy in years...Kris has done amazingly well with teaching himself guitar and the person who we have working with him is a former musician, and he said that kris has talent and lots of it. Doug has said that kris is going to do a concert in October at a local festival. He fully believes that kris has it in him to go places with his guitar playing ability. See...autism has its UPS...with all the work kris has been doing lately with his music and working for hours on end with it, the director of the music school has said he will work with kris to get him an interview at Berkely school of music. He feels he can pass the audition with no problem at all...music is this kids life....
Josh has accepted a position with church in the youth team. he will be helping with the program 4 days a week. plus he will continue with being a PCA. He cannot go back to school right now, he needs to work on paying his school bill down first. He wants very much to go back and finish at a local school to save money on room and board. He has 2 yrs left. He is looking forward to doing this....
Lots of things are going on still diagnostically with Lianna and Reilly but we are not rushing to do them. We will simply do things the way we have and increase like they want, and do it the best we can. We will leave the rest in Gods hands because only HE can make things improve...We are not focusing on the bad things because its not going to overcome us...We will focus on the good things. We have LOTS of good things....We have lots to look forward to in the next weeks.
Kids are going to see something soon that they dont know about yet, and it will probably reduce timmy to tears and cause kris to be mesmerized...Lianna and reilly will love it...
I am working on getting some extra work in to help out here.
Josh is feeling at peace with his choices...
and Rod is doing well at work. God has definitely blessed us even though it may seem that so many other things are going on....God never sends rain with out a rainbow...and we are looking for them and we are seeing them.
Please keep praying for Bonnie, she is traveling home to arizona and I got to spend a whole 5 hours wih her on sunday. It was so nice and wonderful to share and laugh with her....she is a beautiful woman and I love her tons..
please pray for the other mito families and moms...
I will update when new things go on around here...

Friday, July 18, 2008 8:35 PM CDT

It has been such an emotional week, and actually very busy. Kids had vacation bible school and had to be up and out of the house early every day. It was nice for e as I was supposed to have a quieter week....lol....NOT
Lianna was sick nearly all week due to the energy output. It was sad to watch. Reilly did not tolerate the lack of sleep and clung to me for an entire morning until he was ready to go....2 hours late.
Tim was ok, except for the fact he needed to have his tube changed out. that took a bit. He ended up having issues after the fact that lasted a while...but he is improving and the new tube we found out needs to be changed again...this tube is not the size it needs to be, and his site is so disgustingly infected that we are at our wits end trying to work with it.
Kris had remicade this week and we got the word he has lost 20 pounds in 3 months. we knewit was a lot just didnt have an actual number for it. We are working with the Drs to see what we need to do.
On the homefront, I got the chance to go out today...I got out and then was called to get right back there was a poblem with tim....so I began back, and got a call to forget it, he was better....so I went back...then a call again...ok..so I finally met up with tim and PCA....ugh...it was stressful afternoon. The upshot is Tim was and is extremely dehydrated and so we had to double bag him for the entire day...he looks better tonight, but still will need to have an extra liter of fluid over night and hopefully doubling his fluids for the day work....
but I finally got out....I decided to go to the waterfront. When I got in the car to go there, I noticed something on my dashboard that was a "gift" from some special people. When I saw it I just had a flahback of the moment I got it and I sat there and cried...o ya I looked really cute....an older woman asked me if I was ok, and I just said, ya, must be the heat and being tired. She said she understood!..ugh
anyway I decided I was going to go looking at stores. Not buying anything just looking...so anyway I went to a place where I was going to meet up with a friend for afternoon visiting...nothing grand...so anyway we were walking through a few stores and I saw a louis Vuitton store( I had to google that spelling!) anyway I went in and this woman was following me, so I turned and she said "excuse me can I help you locate something...?" I said no just looking...so with her snooty little attitude she said " o...that bag you have is quite adorable, what is it? is it a coach? gucci? what is 'that' on it?" Soooooo after she was annoying and driving me crazy with her snobby voice and attitude I announce proudly "My bag is a Tink" she says "what?" so I said...TINK...as in tinkerbell...and she got all huffy! she turned her head and stated how ridiculous that was....so, me being me, followed her and said o yes and to go with my $2.99 walmart tinkerbell bag I have MICKEY CROCS ON TOO!...o she was mortified and I had quite a laugh! So did my friend!
anyway it made my day and gave me a laugh.I guess I realized really fast that the people I feel very comfy with are not the ones who think they are all that...
Got back in my car and looked at my "ears" on the dashboard, and started to laugh a bit..then I cried again.
o well....it was an insane day....
beyond all of this, I must say it as been a week I would like to forget.
will update more later....

Tuesday Night , July 8, 2008

Well.....guess I shoulda waited until I saw the Dr face to face before I wrote much....o well...someday I will learn.
Guess I have to get back on the magnesium....seems that little blood count matters. My levels are undetectable and that is not a good thing. So I am back on it and a higher dose! ugh....
My blood pressure was a little low as well...90/54 and my heart rate was 56...oops, guess that is not something good when you are driving a vehicle. I thought I was a little woozy past couple days...good thing I didnt go a couple days ago when standing up or shifting positions made me nearly lose my vision and my hearing went....funny how things dont work right when your not pumping blood too well.
Anyway, my primary care called the mito Dr and after the "discussed me" as I stood there (ok, sat there...wasnt allowed to stand because she didnt want me to fall and get hurt then sue her! her words exactly) Anyway they talked about me and a plan of action was made....immediately begin magnesium again...high doses. Add Co Q 10 at a MUCH higher dose, and Carnitine at a MUCH higher dose. up the fluids ( take stock in charmin, folks!!) The goal is to reduce the amount of mini crashes I am having and try to stay ahead of the fatigue. Lower the stress, or get away a day or two a week for a few hours by myself to allow my body to have a break....she actually wrote a prescription for me to go to bed! LOL..the other thought was take a couple of weeks to get away and let the nurses keep tim so I can get my strength back....I cannot leave my kids that long, so she said for all of us to get away from the hospital and try to be alone....trying that, but the kids missed that memo about hitting the beach and staying healthy...so we are back to square one. If I could afford it I would sit at a hotel in my most favorite place in the world and hit the pool...I would read books and write for hours on end...I would leave the cell phone on vibrate and not answer it....but in a real world, I cant do that...but in my head I would in a heart beat....
someday when I am rich and famous...but I wont hold my breath...
I also now have a new apt set up with Neurology for me...it seems I am having just a small issue with my heart that is affecting the brain...I have a tiny hole...and when I am under physical stress (ie mito crashes) it seems to cause this little hole to be a little bigger....that in turn causes me to have a little higher risk of embolic stroke....been there done that and dont want to do it again..NOT FUN.
My MRI showed that the little hole is causing some issues with things...so off to neuro to see what it is..and then back to cardiology to hear all about the surgery that we are NOT going to do...even the mito Dr agreed that surgery would be hard on me and not worth the risk...I am NOT a candidtate for any anesthesia as it takes me days to come out of it and I always suffer mito complications from simple anesthesia...
but I will listen to the talks one more time...
So basically I discovered that I need to step back and take care of me just a tiny bit more....I promised I would try. I promised I would consider working a little and resting a lot more...I also promised I would keep moving as much as I could with out hurting myself more. But with all that I stated matter of factly I will NOT stop being the mom I signed on to be...and if it is stressful, then o well, my kids are my life and I will stay strong for them and will work on me too....I am waiting on an apt with a Dr in cleveland that they need me to see....there is also a Dr in San Diego that I was asked if I could do....cleveland yes, SD eh???...probably not...but we shall see...
also got word Tims blood counts fell this week from the good high of last week, but we are still not as bad as we were 4 weeks ago....but we are going back in for IV Iron soon..those counts had the bottom drop out on us.
Also his seizures are back big time and he is tremoring badly. I increased fluids and that should get him back on track now. we will see tomorrow...
ok, that is my book update for tonight...



Tuesday, July 8, 2008 8:04 AM CDT

Things right now are status quo on the kids...no new developements for Tim or Kris....and Lianna is doing better with Physical therapy using the pool...
Reilly developed a rash this past week and it looked really bad. He had purple blotches on his hands and stomach over his rib cage, and also on his thighs. We finally got him to the Drs on the 4th and she took one look and said "I have no idea what this is..." his counts were elevated (actually a novelty in this house) and she immediately suspected auto immune issues, so we had to head over to the hospital for all sorts of lab work. No results yet.
It is amazing what happens when you switch your thinking and Drs change how they plan...
Tim is now considered on a no new treatment plan...we will not be intervening anymore unless it will defnitely alter his quality of life. In other words no more tests, no more studies, no more interventions that will put him in the hospital UNLESS he is sick and needs to be there...then we will do what we can to get him through that. Tims wishes were for people to leave him alone and just let him live as best he can. He actually is making plans of what he would like to do with his life, and this is a HUGE step for tim....granted they are nothing that will provide him with security but he s 16 and functioing at a much younger age, so his choices are definitely what a young boy would enjoy....and personally it is encouraging for us to hear him do that. It took peole giving him HOPE and people just being there for him. He has 2 amazing nurses that care deeply for him, and that has helped. He has long distance friends who care and remind me to tell him "the best is yet to come..."...he has an amazing case manager who is working to fulfill some life dreams. He wanted to be in the army before any of the disease happened..either army or police man....we are trying to get him connected with the police to see if we can have him go to training...ok, so he cant DO training but he can be there and watch and take part as best he can....it would be a huge lift.
He is making plans for the fall, he has things he would like to do this summer too...these are keeping his mind free to heal his body some. Also...we have surrounded him with the things he loves the most...His room is full of disney posters from movies. He has autographs from Disey hanging up, and photos of his friends hanging up...anything that keeps his mind off of medical, is good to go in our home right now!....
I was faced with many opportunities this week for either working or playing...I think I will take the chance to work for 4 days, but not sure if I want to do it or not right now....still deciding. It is hard on my body and I am just geting back on my own feet after ANOTHER mito crash...this one was not so good...I have an apt today with my Dr and she already read me the riot act that they are coming closer and closer lately and I need to stop..I need to rest and not do so much....uh huh....8 people in my home at all times, and she wants me to REST..LOL...that is a good one. I presented her with the options I have and she told me I would be stupid if I didnt have some down time and have fun....but I like the pay check a bit too...so we shall see...I think working 3 different times in 2 months was what caused me to crash so hard this time.
anyway, things are going well for Rod now at work, and hopefully will remain that way. Gods hand is truly in the job. It is so obvious....each step of the way we can see how he has orchestrated the past and we can almost see where it is going for the future but I am not going to say anything because I refuse to limit God.

Well I am off to the Drs...Tims labs come in tonight and we will see if the change in approach is doing anything negative or positive for his body...
I will be updating soon...

Wednesday, July 2, 2008 8:32 PM CDT

Ok, I have to say something...
the Devil must really be angry right now. He has been working triple time to get me to fall apart or crash and burn....but my friend Liz is always telling me when I feel like things are falling apart to be sure to know that means the devil knows that God is trying to bless us....the devil doesnt like that...OBVIOUSLY!...so yesterday it came to a complete head and I thought that I was going to crash, burn, and whatever else possible that would cause me to fail...BUT Liz always has said "when you can see that, dont give in but know that its because something good is getting ready to happen...God has a blessing about to happen"...so yesterday when I was losing my mind and hurting so much I remembered those words...I got super calm, and guess what....it ended as quickly as it began and the blessing came today!
I got word LATE today/tonight that Tims lab work has improved "out of the blue" and although he is showing decline in some of his TPN values, his CBC and other vital labs came back improved. So.....I got in touch with our Hem/Onc Dr and was giddy with delight, and she put a semi kabosh on my party...but she did agree it was so much kinder on the eyes to see the labs, but we need a few to look like this in a row to consider them "improved"...I say God simply answered momma's heart prayer....
Tim is tired and not up to par right now, but the labs look better and I am hoping it means things are improving somehow...after an entire year of steady decline, I would love to see a leveling off for once. We have discussed the things our Dr asked us to discuss and we do have a plan in place of what we want to do and what we know Tim wants...thank you all for praying about that. It is not something any parent wants to discuss with your kid...
Kris is having trouble with his GI stuff again, and he has lost a significant amount of weight. We now have a plan in place to do remicade every 4 weeks because he cannot go any time at all beyond that...and then 2 weeks into it we have to use Cipro for 10 days...ya sounds so much fun but we hope to correct this eventually so we can avoid surgery.
We also have begun a ton of suplements with him....our Dr wants to act aggressively.
Josh is doing well with his shoulder. He gets the block off an sling off on July 22. Then he begins 4 months of physical therapy.
Lianna is growing like crazy and on a new diet. She is doing a lot of water stuff and swimming. We have begun walking through the neighborhood and trying to build up stamina and muscle without causing either one of us to cry in pain. we are not doing a ton but we are doing some. Her lactic acid levels are always on the high end of normal and we know that simple activity puts her over the top. So we are trying to be careful.
Reilly has lost a few pounds and seems to be breaking out in rashes daily. Weird rashes. I am sure it is because we had to stop feedin him the diet he was on. We could not keep up with total gluten free, not for now...I am going to work on finding out exaclty what else he is allergic to a I know there is more..but I am seriously considering going back to vegan as everyone in the house loved that...and it is SO MUCH CHEAPER! It is a thought.
I am seriously thinking about going back to work for a couple weeks if the time is available...it helps stabilize things here and keep things on track. We'll see...
I got the chance to go to the beach this morning while our nurse was here...no kids, just me and a friend. I needed an hour to be with an adult today. In the time I was there I managed to not only get some color, but I got SOME COLOR...I think the proper term is SCORCHED...ouch...just a little too long on my face....I figure by tomorrow I should be able to open and close my eyes with minimal pain...ugh
But I fully loved the beach, and I plan on going back tomorrow..although I will let you all know I am going to wear a short sleeve shirt and a baseball hat....

I want to end on a cute note...my friend Liz took me to go see Kung Fu Panda, and it was great...but a comment that was made really hit me. Po, the panda was told "the past is gone, the future is coming, today is a gift because it's the present..."...I truly have thought of today as a gift...I had my beach, my son has improved blood counts, I got to tell someone how much they mean to me, and I walked 1/2 a mile...it was a gift....and when tomorrow comes, it will be called "today" and I know that today is a gift because its the present.

Please pray for my friends Dalton, craig and Donna...pray for their health and the Drs working with them.
Please pray for Bonnie. She is traveling to Boston and although I am excited to see her again, I am sad for the reasons why. Please pray she makes this trip safely and that she has comfort through it all.
Please pray for my friend AnnMarie as she is struggling with mito and its effects. I hate to hear her down in her writings. She was a big support for me and her teddy bear reminds me each time that I am getting a hug from her when I need it. She needs energy and for the progression to slow down. Pray the Drs find a way to wake her up long enough to enjoy her family and do what blesses her the most.
there are so many other prayers that are needed but none more important that a cure for Mito....
Thank you to all our nurses, pca's and friends. You all have come to us in a special way and have been our lifeline. Thank you to all of you.
Till next time....
Have a wonderful 4th!!!!!!!!!!!

Wednesday, June 25, 2008 8:58 AM CDT

To start my day today I woke up after having a pretty nice dream (for once) and found that Tim has begun bleeding out his central line exit site AGAIN...I think I am going to just order a straight jacket today.....for ME.

Tuesday, June 24, 2008 5:18 PM CDT

I am really struggling to write this entry right now because this news is so fresh...
I will say that we live on edge every day and it is a way of life we simply live with. But when something very small occurs you can either hold your breath or roll with it. Generally we roll with it. This past week we can see Gods hand in what has taken place and how beautifully it has played out safely. I know in my head and heart that He still has this in control yet in my mothers heart, I am breaking....It may be the straw that breaks the mommas heart today...
We saw our specialists today for lianna, and found out that she definitely is having disease progression. We have seen the signs but have ignored them yet dealt with them at the same time. Just knowing "She is not Tim"....Today our mito Dr said "unfortunately this is reminding me of the way Tim began his decline and since we know more now than we did then, we want to be aggressive and work on this"....my heart just sank. The list that we were given to begin working on took a full page of writing by him!
We need to bgin immediately work on major increase in fluids.If she cannot do it on her own, we will need to arrange to have it done for her. She needs to begin potassium and sodium as they are chronically low. Her heart rate was 101 (too high) and her blood pressure was 113/51 (weird combo) and She has developed a heart murmur that doesnt appear now to be "innocent", so we need to go back to cardiology to see why it is present. Her heel cords are so tight, and her AFOs are hurting because of it. So we need to adjust them and work with PT to try and stretch them out some. Her fatigue is hindering her at times, Her pain is increasing, and her migraines are really bad lately and meds dont really help. We now know her blood sugar is chrinicaly low and yet she is not hypoglycemic...she could be pre diabetic but we need to see endocrine to find that out. Her balance is off, no one can explain why except increased muscle weakness. Her Pulmonary function tests that were done a while ago need to be repeated because he just got the report and it shows marked increase in her muscle weakness (today her O2 saturation was 93)...plus we have diagnostic proof of Autonomic dysfunction...sooooo there is a lot more and I really want to admit I shut down listening and went into a little protective zone in my head and didnt hear the rest..but I could read what he wrote.....
After all of this and I was pretty much in a ignornace zone, I was asked how Tim was...
When I told him how he was doing, he point blank asked me if we have medical proxy in place...so I asked why, and he replied it was necessary. I stated very stubbornly that Tim is not going to need that in the near future as he has SO MUCH to live for right now...he agreed with me, but reminded me he cant tell me when this would happen as he refuses to do that because he is generally wrong, but he wants us prepared and not doing it when we are more emotionial during a crisis....like I was less emotional today!!!!!!!!!!!
When I went to leave I of course had to be alert and as if nothing was wrong so Lianna would not panic or freak out...but it was hard. I do see Gods hand in today. I see He has it in control and knows what is best and how this will be worked out...but the mom in me is just very sad and really could use a shoulder or two...I know once I sleep, and once I take a deep breath, I will be able to compartmentalize it and stick my head in the sand....ignorance works wonders.
Kris is still having lots of trouble with his tummy. He is in pain and remicade has not kicked in yet.
Josh is in NJ at a prom with a good friend of the family...he is still on percocet but he refused to let her down and went anyway.
Tim is struggling but he is proving that FAITH can do so much. He has phenominal nurses and they are so good to him. He is talking about plans in the future so I know as bad as it gets Tim is holding on and Tim is fighting like mad to enjoy his life as best as he can. We did find out the IVIG increase is a failure. he did not respond at all. We do know that his bone marrow is in trouble, and he is showing permanant damage. We are hoping there will be no organ damage, but it looks like he is bleeding internally and he is showing blood in his urine off and on. So we need to investigae more, but we need to be careful not to hurt his system anymore right now. His heart rates are still in the mid 100's and scaring most people, but we are used to it his blood pressure keeps dropping low low low...but we are managing it with IV fluids. Now we just need to watch and see what Tims body is going to tell us, and follow his lead.
well I guess that is about it for right now because I just cant think anymore..
I will update more later when I can think straight, I am sure I have forgotten so much...
sorry this is not upbeat or even my normal happy....I am working on it...I really am.

Thursday, June 19, 2008 9:59 PM CDT

ok...the kids in this house had to miss the memo that states we need things to end for the summer....Absolutely insane!!!
We have finally stopped the bleeding but we have more issues now. New protocol...Tim cannot go through ANY procedure unless he gets platelets. His counts fell to 20,000 and that was simply too dangerous. However the surgeon KNEW before he did this that his counts were extremely low...needless to say we are REALLY upset about this. Yes it needed to be done but it was something that should not have turned into a full fledged emergency. To be honest Tim looks horrible. He is shiny and red in his face, swollen up a bit. His heart rate is consistently over 110 right now, and he is in a LOT of pain in his chest. He is tremoring a lot and his voice is not strong. We now have 2 nurses and a PCA for him to cover a lot of time. I am just very glad that I was able to take him away alone and give him some time feeling normal. No one knew that he would have such a huge set back so quickly after it.
Kris decided to break through his meds and spend the whole day at Tufts NEMC for remicade and fluids. He is having stomach pain from the colitis coming back full force. He is not eating and drinking right now, so he is just miserable.
Josh is struggling with his recovery from surgery. he is very nauseated and trying to fight through it.
Well I am calling the surgeon tomorrow morning after I change out the dressing one more time. Hoping that tim is finally able to get off bed rest and let him do something. He tried wednesday but it caused a ton of bleeding...so we shall see...
Thanks for following this journey!!
Now if I can get the kids to just read that memo that says "mom wants a summer time to relax a bit and hit the beach"....I mean really, we are 10 minutes from the ocean and I would really like to see it little more often than I am!! Also somewhere in that memo it should stipulate that the kids need to stop out doing each other!
Like I have said so many times before, God has truly blessed us in so many ways, He has been so faithful and merciful with everything we have gone through. I have no doubt that He is in control and will carry us through this latest issue....please pray for our mito friends who are hurting as well, that somehow their burdens will be lifted.
I will update with any new info that we get tomorrow....






Wednesday 2:30 pm, Tim has begun bleeding again and surgery has been called...we may be heading back to the OR again in a bit....will update later...

(Wednesday morning quickie update: The bleeding seems to have stopped as the site is no longer bright red and fresh looking. Thank you for prayers. I called surgery and they said to watch it carefully because it could start up again with his blood counts the way they are.)

Tuesday, June 17, 2008 7:29 PM CDT

Here is the loaded update.
Things went ok when we got to the hospital and we got tim set up in surgery. The surgeon had difficulty removing the old cuff on the line and had to dig it out, but the new line was difficult to place and they had to use a spacer to help guide the wire in with the line over it. Once the line was placed he was taken to the Recovery room. It took almost 2 hours to place it instead of the 45 minutes max they had told us.
Once in recovery he came out of anesthesia with stimulating, and then he had a seizure which caused him to lose body function and then he went into a very deep phase of rest. It was very hard for them to arouse him and for a while they could not. After a good long time, I got to get him to come to, but his pupils were unequal and darting a bit. Had lots of tremors and seemed disoriented for a time but improved as time wore on.
After a few hours we were able to leave the recovery room and go home...On the way home Tim says to me..."mom, is the bandage supposed to be red?" UHMMMMM NOOOOOOOO I was almost home nd in order to head back to Boston meant another hour at that point of turning around and heading back....but now I have tim bleeding out his chest! Rod called surgery and they called back...no, they are not supposed to be bleeding at this point. I am sick over this...if the celtics were not playing in a playoff game and I could get beyond the city to MGH I would do it...but in order to go back to boston I would be stuck in traffic...at this point we are waiting to see if he will stop bleeding...it has been 7 hours since the OR and this is not at all humorous! Surgeon wants us back in and if we need to we will be going in by ambulance...
please pray this ends soon
Also he is back on Vancomycin. Which means I have to be up every 6 hours to pretreat with IV benedryl, then hook up the IV vanco....it will run for 15 minutes then the vanco will run for 2 hours....so once again, back to no sleep...but they did say by being vigilant we avoided a dangerous emergency. The inner line was bulging on the TPN side and the outer line was broken. It could have blown at night and we could have lost tim if he had bled out in his sleep they said...scary!
Ok, I am off to sleep as it has been a long day and didnt eat an awful lot. Tomorrow is remicade in boston and thursday is IVIG in boston...5 days straight in boston so far and I am wiped out and broke! I need to recouperate....
Goodnight!


Monday, June 16, 2008 2:42 PM CDT

Worse case scenerio ....it has happened.
We are going into Surgery tomorrow morning at 10:30....We could use prayers for him as he is not really strong enough to go through this.
His line is cracked and they stabilized it until we could get him into the O.R...we will update more as we go through the day tomorrow...

Sunday, June 15, 2008 7:30 PM CDT

we have a BIG problem here and could realy use as many prayers as you can muster up!
Our day really hasn't gone all that well in some rather non important ways, but this afternoon Tim complained of intense leg and stomach pain. His legs were cramping and contracting but we fixed that....His stomach we needed to vent and I had to manually "deflate" his tummy....by pushing on it and leaving it to vent it helped the pain. THEN his dressing on his central line was loose so I decided to just change it as I was taking care of him right then anyway. As I began cleaning the line and inspecting the site up closely I found that his central line is breaking on both lumens....both sides have tears. They seem to be superficial and I hope they are, HOWEVER the one on his TPN side is a LOT bigger...it is directly at the site of the V hub...the part where the lumens seperate and become 2. I have got to call the surgeon. Because this line is so old I know they will want to replace the line. They will not work on Tim in Interventional Radiology for line placement due to the fact he strokes out metabolically so fast with procedures...so we have to go in the operating room. THAT IS NOT GOOD right now....tim does not have the blood counts to support a procedure under anesthesia. Certainly not a line placement...not in his chest!
So please....last time we had a OR procedure it was bad...we had problems for a very long time....please pray for us as we find out what we are going to need to do...
I will update as soon as we know what is going on.





Friday, June 13, 2008 8:18 PM CDT

OMG...I have come to the very quick conclusion that josh CANNOT drink alcohol or take any form of drugs....this child is annoying when he is "strung out"...I had to turn the radio up all the way home, tried talking on the phone, sang some songs (even annoying ones to him) and I swear he never shut up the entire 1.5 hour ride home....I was never so happy to get home from Boston as I was today. At least when I take tim in and out of Boston he sings (way off tune but he is not bugging me) or he sleeps the entire time. Kris ignores me or listens to his IPOD....lianna plays with her dolls or reads...Reilly watches a DVD...but Josh, o man, He is not someone you wish to be around when on pain meds and left over anesthesia!!!
LOL
He made it through the surgery fine. They gave us a DVD of the surgery so we got to watch it at home and see the damage. It was pretty extensive, but it is done and he is resting comfortably now.
Tim is not doing well. Something is wrong, cannot place a finger on it, but something is not right. He is gagging with every med, and he has not had more than 2 ounces of liquids by mouth. He is not eating any food at all...at least last week when we were away he was trying to eat something even if it was a bite or two....but he hasnt had any food at all in 2 days.
I spoke with the neuro today abotu reillys testing. All the neuro transmitters look good. His spinal fluid has low glucose, and his MRI looked much better than the last one. They still believe that the lingering issues are simply mito related and nothing added to it. However I was warned he is SOOOO much like Tim that we need to watch it closely.
Ok, that is as much of an update as I have time for. I have to get IV meds ready and I think I would like more than 90 minutes of sleep at a time tonight. Actually what would I do if I could sleep for more than 2 hours?? Honestly I think I would panic! someting would have to be very wrong for me to get to sleep more than that...someday...maybe....


Thursday, June 12, 2008 9:28 PM CDT

My quiet week (ok my quieter than normal week) was really not so quiet after all...
We had MDA clinic apt on Monday, and I was more than exhausted for that one. I got home sunday late at night after traveling through massive storms in Conneticut. At one point we sat on rt. 95 for an hour just video taping the lighting strikes one right after another...hail and tornado watches. O I was enjoying it so much. Rod decided it would be hysterically funny to text message me a photo of the radar for the area....I was not so thrilled to see lots of reds and purples. But we did get home and then I had to get up an move on monday. Two kids and a 4 hour apt.
Reilly needs to get a suit that is for proprioceptive dysfunction. I honestly cannot explain it well, but basically it is a suit he wears under his clothes to help him with understanding where he is in relation to space and will help him "feel" his environment. This should be fun. I have a hard enouh time keeping clothes on him, and now I have to add ths skin tight suit with it....also he and lianna need to get cooling vests. reilly will look like he is a blimp by the time I finish dressing him! It is going to remind me of the scene from christmas story where the poor kid has been dressed in his snow suit and cannot move an inch....poor reilly!
Lianna has very tight hamstrings now and her AFOs are needing some adjustments. They wanted to increase her meds to see if we can loosen her mucles and joints but she is on a fairly high dose and I dont feel comfy going up any higher. I am doing daly massaging of her legs with hopes it will stretch that out a bit. She has been having serious migraines and her meds are maxed on that. She may have to go to shots for them. We are trying to avoid that. Lianna and shots do not mix. She sees a needle and she runs. (hmmmm maybe that would help her hamstrings???? nah...) Her blood sugars have been chronically low, but nothing so low to be causing her headaches. We are going to increase her meds one last time and if it doesnt help, we are changing them all together.
kris had to go in for his Remicade treatment this week on wednesday. When he got there, it got cancelled. The dr is very unhappy with the progress he is making. His joints are not responding well at all to the meds. His GI issues have responded pretty well, but his joints are horrible and he is pain all the time. He is no longer working at all because if he makes up the flight of stairs at our house, he is done. He cannot do anything more, He has to sit down. He is really struggling. The biggest problem is this....he gets IVIG to keep any form of an immune system going and has had it since he was 3 months old. Without the IVIG Kris will get everything going around. He simply has no way of making an immune system on his own. He has had chicken pox 7 times and shingles 5 times that we are positive of. He ends up getting every virus and every infection going around if he comes off the IVIG...we know because we tried to for 3 years, and ended up back on it. well the IVIG may be cancelling out the effects of remicade in kris...so basically he is getting remicade, then going and getting IVIG and it cancells the antibodies that the remicade is fixing...so we are wasting it. Now we need to decide whether we let kris suffer in pain with Crohns and colitis, with bleeding and intense stomach pains that hospitalized him all winter long...OR keep the remicade and he can suffer with every infection or illness going around...We are in talks with both rheumatology and immunology. This should be a fun week with this, bcause he is due next week for his remicade and IVIG....one is being cancelled...which one??? not sure yet.
Josh goes in for surgery tomorrow on his shoulder at mass general hospital. Once they fix this shoulder he will be in a sling for 3 months and 6 months of recover/rehab...then we begin on the second shoulder. Gotta love Mito and the weak muscles! not
Tim is still holding his own. His tube site is extremely painful right now and he is crying when we try to change the sponge on it. Last week it looked fantastic, the best it has looked in almost one solid year, and now it is more painful then ever. Tonight he just cried and said "why does it have to hurt?, why cant it just stop?, I cant take it anymore, just make it stop." and all I can tell him is we are tryin very hard to make it not hurt. But I have to put on nurse hat and change it, clean it and get it looking better...all the while he is gritting his teeth, begging me to stop and all I can do is ignore it, or cry. I have to ignore it....it needs to be done.
I hate doing this stuff to him, but there is no choice...
on the good news front (yes this really is good news in a sad sort of way) We know where tim is losing blood at this point. He has blood in his urine. although it is not a good thing, they believe the high phosphorous levels have caused him to build up minerals in his kidneys and that is causing him to bleed a bit. Also they are surehe is bleeding in his GI tract. So what do we do about it? Not sure...no one knows what we should do.
We also got testing results back on Tim from the hospital. He was not feeling 100 percent on the day they did testing but he has gone from a kid who was WAY ahead in school to a kid who is barely able to work at 1-6 grade levels when less than perfect. On a good day his scores put him at a 5-6 grade level...however I can get him to do 9th grade work in some subjects and he is ok with it if given lots of time. He has lost so much. BEAM testing has showed u that both temporal lobes are just not working at all. He also has frontal lobe involvement too. His hearing has gotten worse, but they also said what he can hear he is not processing very well so it seems he cannot hear what in fact he can hear (which is not a lot) he has learned to read lips really well. We are trying to work on Signing with him but he hates it. I can do some, but he cannot do it if his life depended on it....and it may!
Ok, me....I did a very dumb thing...I tred to be super mom (no comments!) and I was lifting the scooter out of my van. As I was struggling with it and trying to keep reilly from running off to find bugs and treasures, I jammed my wrist with it between the van and scooter. It hurt pretty bad, but at first I thought it was just jammed...by night I realized I think I broke my wrist or arm above wrist. It got to the point 3 days later I still could not move it and no amount of pain meds or ice was working....I am talking nauseating intense pain....to the point where I was not sleeping because if it moved in my sleep I would wake up fast....well, I finally found out it was dislocated! It took me 5 days to do something about it, but there is a good reason why it did...I just cant explain why...trust me I just couldnt. I could not leave tim and reilly while I went to get it looked at. So, I finally got it all popped back in socket and it feels a lot better. Sore still, but I can sleep and it is ok. I am hesitant about lifting that scooter out anymore! LOL...I never want to feel that ever again....it was my right wrist and I am a righty.
lets see, have I forgotten anything???
O yes I have...
Reilly is still working on his make a wish...he made his wish already and we have it working now, but now he is changing things! LOL...he wanted to stay at the animal kingdom lodge at disney, so they were working on it...now he is saying he wants to stay at POP century...I am sitting here going "no, honestly reilly you want the animal kingdom!"...8 people at POP will not be fun! But reilly is saying POP....ugh, there is hope tho...I am reminding him how much he loved during Lianna's trip that he could see the animals. He said he remembers...lol this should be a fun few months. His actual wish was to spend every holiday at disney with his whole family...so we planned it over thanksgiving, celebrating his birthday (actually it will be my birthday, tims birthday and reilly's all the same week! we are all 8 days apart), and at GKTW every thursday is christmas...so we get all those holidays done! Disney is set up with lights and christmas decorations and wants to see the christmas party...so we aregoing to have to get decorations to decorate his room at the resort each day. each day a different holiday.....valentines day, st. patricks day, halloween, and fourth of july. Those are the fun ones for kids I guess. He keeps mentioning them. So we will decorate each day for something new and he will get to celebrtae each day with his whole family. Sounds like a fun wish to me.
it beats his second wish if the first one could not get done....and that was a HERMIT CRAB! no lie....ya, can you all see WHY we prefer the first wish.
ok, I am done writing the book for the night....so much to cover!
God has been so amazingly wonderful to us and blessed us beyond belief in the midst of the storms here.
Keep praying for the mito community that somehow a way to fight this disease would be found. No more bandaids on the disease but a true cure or treatment.
please keep praying for Bonnie. She truly needs prayer to get her health back. She is struggling and could use some peace about things. Please pray she can come back east to see her grandparents soon.
Thank you all for your continued prayers and support.
I will update briefly after joshs surgery is done tomorrow.

Wednesday, June 11 , 2008 7:29 AM CDT

I dont have a l ot of time to update right now as things are busy here, but I did want to let everyone know that we keep getting the funkiest of blood results on tim. Last week we had dangerously high phosphorous levels and they were hoping they were a lab error or poor handling of sample...this week we had high level again....it was a little worrisome because this was alarming to the Drs but they haven't said why yet. So we wait for the WHY. Also, Tim has now begun throwing up every time we put anything into his tube, even 5cc's of medicine or water. He will wretch for a good while and actually will get it up. Now this is a problem because we are using his J TUBE to by pass the stomach and he is getting that stuff up! we are 45 centemeters away from the stomach!!!!! UGH
Last night he also began complaining of spine pain...showed me where it is and now I have to watch it closely because what he doesnt know is he is showing me kidney area...and his urine tests this week showed blood in it. A HA...we finally found out where some of the blood he is losing is going...but we dont know why on that either. He does not have a UTI or kidney infection....so we have to wait on that too....
Lianna and Reilly had their MDA appts. I will update in a few days about the results for that....



Thursday, June 5, 2008 7:36 AM CDT

Sorry Sorry....I know I am horrible with updating like I should...
Yes I have removed the security password as too many people were having trouble with it...however it will be put back on if the people who had been harrassing begin their escapades again...hopefully the behavior will have ended by now.

Updating on life is simply crazy right now, but God has blessed s beyond belief as well. We have a new and amazing nurse Cherrie, she is wonderful and a good addition to tims life.
Tim began IV iron and did farely well with it and they ran it faster than they wanted to but he handled it like a trooper.
His blood counts look so bad and nothing is really working to correct them. We just got word as well from hemotology that he is bleeding somewhere inside, most likely the GI tract. We are looking at going in to take a look around to see where the loss of blood is occuring from. Our hope has been and still is to avoid as much blood products as possible.
The biggest thing with tim is to give him something to focus on. Well 2 friends did something this week to give him something to get his spirits up and to make his dreams come true....it is not fair to say what it was but, they know and he may not be feeling well, but he is truly happy and looking forward to next time and this is something we needed for him. Thank you Kimmie and Elton. O ya, my little goofball son got a train set and decided it would be a geat addition to his hospital room!...so he brought it to the hospital and set it up in the room. Complete with smoke billowing out and whistle going off...it was hysterical. We are not talking a little train, I am talking a LARGE train set. O the nurses were loving that. LOL...it was so big he had to put the IV pole in the center of the track and play with it from the middle...ya, life with tim is NEVER boring.
Kris is going back in for his remicade next week and althogh we wish it were working better it has been a help thus far. His bone scan came back with spots on it and we will be following it up. The thought is that he will respond well to the remicade but when is the key question. It HAS worked on the GI problems tho....no adverse effects at all. AMEN.
Reilly was dmitted at Boston Medical center for the week and we looked at his EEG. He also had a Spinal tap and MRI because of his preemie issues and mito. No word on the results yet, hopefully in a week. We did look into why he needs so many fluids and well the answer was "he needs a lot of fluids to stay healthy"....wow, what medical expertise! I knew that already. He just needs a lot. He still screams half the night and I am still up with him a lot due to that. Those issues need to end, soon..mommy cannot live on a few hours of sleep or broken up sleep. It is like being with a newborn.
Lianna and Josh are holding their own for now and we are very thankful for that. Josh goes in for shoulder surgery on the 13th. He is hoping to get this one done and then the other shoulder done in the fall so he an be all ready for Reilly's make a wish trip in Nov/Dec...
I hurt myself pulling the scooter out of he van, for Tim. My wrist is very sore and not moving very well...when I can
get it looked at I will..meanwhile I am babying it!
Well for anyone who really knows us here is a laugh-able moment....we are planting a garden to help with food costs...LOL.ya me....I cant tell a seed from a seedling but we planted a garden. Hoping that we will actually et something out of it!
well, LOTS of apts coming up and decisions about Tim and his blood work. When we get info on what is going on we will post it.
Beach weather has hit Mass. I plan on spending LOTS of time there when not in the hospital..and yes it is true I even found a beach in Boston I can get to in between apts...lol...sorry, what can I say, I need a break during the day.

Please keep in prayer a few of our friends who are struggling right now with no jobs, or really bad health. One of our friends has just learned that thier child has mito, it was suspected but now confirmed and another is still learning about it.
too many kids have lost the fight this year and we all know it could be our turn next. Please pray for all mito families.
I have a special friend, Bonnie, that needs prayer. Bonnie is really struggling with her mito and I want to get a chance to see her. Please pray she finds strength today to keep fighting...Bonnie, love you sweetie, and I am here for you. Never stop fightng! God is carrying you, just let Him do it...

off to begin our last day with good friends and happy times
I will update sooner next time...

Thursday, May 22, 2008 7:34 PM CDT

Whirlwind day....
Tim left for the hospital after getting a extremely special gift on our door step at 7:30 am. He spent a good amount of time sobbing over the gift and note, and also because it was known that this was going to be a very trying day for him. He was apprehensive but as always he just needed to know that we were in control of things. That is the blessing of his brain atrophy, He honestly doesn't understand the seriousness but is willing to accept it if we are seeming in control, or don't lose it emotionally.
He began with the dose and each time we increased the rate we held our breath waiting for a reaction...the only reaction came late this afternoon at the last increase. He did really well up to that point. had a reaction then He was slowed WAY down for a short time, given benedryl and seemed ok after a while...so they began the dose up again and finished with no more emergencies.
He just got home a little bit ago and is now running a fever. I called and we do need to watch it, but hoping this isn't a reaction at this point, but most likely it is. We were extremely close to having to get a transfusion of platelets today as their minimum protocol is 40,000 and tims count was 9,000 (normal is 150,000-400,000) BUT momma won out and we held off. He is not actively bleeding, ..I spoke to Hem/onc and they were reluctant but agreed that if I felt comfortable managing him and watching for active bleeding, poor blood flow in limbs, or brain changes (seizures), then they would wait 24 hours to see if his counts improve. If I lose out it wont be from lack of trying, and I would like to give him a fighting chance without blood transfusions.
So for now he is sitting on the floor playing with his train set and looking pretty good considering he has enough medication in him to wipe out an entire village.
Tim is a fighter today. He got through the toughest thing he had to do this month. Next on our list is IV iron for 6 hours next Thursday(then weekly thereafter) . In a few weeks we will start to know if this is going to work.
Thank you all for the wonderful notes....and calls.
I promise I am still working on the caringbridge problem! I will fix the "username/password" thing....
Thanks for traveling our journey with us,







Wednesday, May 21, 2008 10:57 PM CDT


Could you please pray for Tim tomorrow as he undergoes a very serious treatment. this treatment is experimental and very worrisome to us. We have NO choice but to do this....we need to pray he does not react to this, we need to pray he does not experience the pain that can come from it. We need to pray his bone marrow does not reject it. This could be dangerous because in fact it could shut his body down at any moment during the procedure or anytime with in the next week after it. The Dr involved said that this is a two teired process for Tim. We need to try this for 2 months. IF we do not see a change in his blood counts, then we have to do another bone marrow test to be sure there is no malignancy. We opted to hold off on the test and go for the experimental treatment because his last bone marrow was what nearly killed him and caused him to suffer a metabolic stroke. So we like to hold off on surgical procedures if we can. Basically right now he has built antibodies towards his own bone marrow and his blood counts are falling dangerously low, and in fact one Dr commented with the counts he has he should be comatose. He is not....in fact tonight he got punished for telling lianna she was a dork!...I had to be a mom and do my job, but in my heart I prayed that he could call her that again tomorrow and every day after! (well not really call her that, but you understand)
I also should add, Tim called her a Dork after she fell backwards down an entire flight of brick steps....she is in a leg air cast for now...xrays were done and we will find out tomorrow if it is broken, hopefully it is simply going to be a bad sprain..x rays look like that so far..but 2 hospitals at the same time????... ugh, o well,
she WAS a dork, but Tim should not have called her that.
anyway, please keep these requests in your heart as you all go about your day tomorrow...I will update everyone the second the treatment is over and we got through day 1...each day the chance of reaction is less....so I will update.
Also, to let you all know, Reilly will be admitted to Boston Medical center on May 27th -30th for a video EEG to finally capture the events he is having on camera AND EEG at the smae time. They know he is having seizure activity from seeing it themselves, but also on video we have captured....so now we need to see where they are coming from. We also hope we can get an MRI around the same time to look for the myelanation problems he has had...hoping it is improving but we do know something is wrong due to his neuro exams.
Thanks for following us!

Wednesday, April 30, 2008 8:53 PM CDT

Happy Birthday Lianna!!! she turns 11 on May 1st

Things have been in high gear here for days.
Josh is worried over school and finances, and has been struggling to get through the end of the year. Just a couple more days.

Kris is really not well. He is in a lot of pain, bleeding again and very nauseas. The chemo drug he is on is wrecking his body so much. He has already lost 4.5 pounds in 2 weeks and today nearly passed out from a simple IV. He is so dehydrated. He got extra fluids today along with the remicade and even the nurse was worried enough to page the Dr 3x regarding the way kris was looking.
We now are armed with Zofran for the dys he is just too sick. He had more xrays today because he had an abnormal bone scan. At some point this kid needs to have a break. He has been sicker than he has been in a LONG time and this time it is seriously keeping him down. He wanted to apply to college for next year, but feeling like this just may make that dream not so possible.
pray for him regarding that.
Tim just finished Zosyn for 2 raging infections around his tube site. Site looks nasty still and tim has had a huge increase in seizure activity. Nursing hours are incrasing and the need for more hands in his care has become a norm...
His blood counts look horrible, and there is a phone call meeting tomorrow afternoon with the hem. Dr regarding this. Evidently his labs that wre run from the hem/onc office show something that she needs to discuss....hoping it is nothing that we dont already know.
Between Kris and Tim we are spending HOURS and DAYS involved heavily on medical issues. It is far more than simply insane. I have an offer once again to do a small job and I am taking up the offer simply to help out with the ever growing gas/food bill.
Reilly is being admitted on the 19th and hopefully we will get answers on day one so we can get out of there relatively fast. Nothing ever works that way but we can hope and wish.
Lianna has her own issues going on but they are being handled by yet another increase in migraine meds. It seems to be working ...yippeee finally.

Making this site private was a really tough thing to do, and it went with lots of thought. I just want to thank each person who wrote privatly and gave support. Thank you all so much. We have enough disease in the house and in our life, that we just needed to get the other disease out of our life....so we cleared it out and honestly it has been nice. It hurt a LOT first few days realizing what it involved, but we really are managing mentally just fine now. So thank you all for the prayers.

Please keep praying for my friends Bonnie, Malisa, Donna, Dalton, Craig, Keith, Clay, jake and Cole, Sophie, Heidi and Gwen. Each one is going through so much right now, and need the prayers.
As we end the month of April, and start the month of May I am reminded of one defining moment in my own life.
I had 3 little boys and desperately wanted a little girl...After 3 years of absolute struggle and coming to terms it may never be, I was blessed one day with a phone call that said it was a miracle...I would be a mom again. By february of that year it was becoming clear that the miracle may not last.....total bed rest, total obedience to keep the miracle alive....Finally in April I was told it was not going to be realiztic to keep this going so to choose a date...I chose May 1st to represent that april could bing those showers and fears, but May brought beauty and peace...a time that I knew meant renewal of beauty that had been suppressed while the cold and harshness of winter was present. May brought warmth, color, fragrance, and beauty. May 1st brought my daughter.....
Now I have my beauty, my colorful girl, full of warmth and spirit....So May brings that to me every year. My miracle.

I will update with new info as w get it regarding tims labs and Kris....
Thanks for following our journey and thank you to our friends who have become our family.....

Sunday, April 20, 2008 9:34 PM CDT

This has been one of the most difficult and possibly the most hurtful weeks our family has had to endure.
HOWEVER one person said that we need to remember the love that we have in our home and with each other, and that is all we really need and to ignore the rest....unfortunately that person lives far away and my kids miss her...especially Josh and Lianna.

Anyway, for some reason Kris is having some sort of issue that we cannot put a hand on...he is tremoring a lot, and he is feeling pretty weak. His balance is off and having stomach pain ith nausea. We think it is from the chemo rug he is on. We do not know for sure tho. He just doesnt look right.

Tim is on Zosyn now for his tube site. The infection has colonized and it seems to now be in his belly button...not sure if it is the same thing but for some reason it is oozing in there....I wonder if showering translocated the infection a bit....ugh I am tired of wondering!
His hearing is getting worse we think. he is needing a lot of cues to get what we are saying. The school is working on some cards to use for him to learn alternate ways of communication. We are going to begin learning ASL, as we need to do this before tim loses more. Speaking of loss....Tim LOST his hearing aides! the case and everything is missing...o ya, can we say thrilled over this?!
His blood counts are back to being very low again. He cant keep them up long enough to make any differences in how he feels. We are working with 3 different teams of Drs with hopes that he will climb out of this infection cycle.

Reilly has a date of being admitted for may 1st but we asked them to push it out a couple of weeks and get to the 19th. We are waiting to hear back from them.

Lianna has had worsening of her migrains and we have increased her doses of meds a bit. It seems to be helping. She is acting better now.

Due to the amount of stress this week I reactivated symptoms of an old stroke I had. Almost like a severe case of vertigo but it was responding to zofran. I spoke to my PCP and Neuro and it was definitely decided that the stress we endured this week caused a relapse with the stroke symptoms. It was scary at first as we thought it was a new stroke, but the symptoms came on sudden and went away over 24 hours. The symptoms were bad, but I was able to understand everything which is how we knew it was not a new stroke.

The diets here have been going well. I am supposed to be doing a ketogenic type diet. It has been very tough on my body thus far. I am spilling ketones finally! but I am also spilling protein and my blood sugars are consistently very low. So now I have to find out what to do. But I so far do not mind the diet so much.

Please pray for a few of my friends who are hurting right now.
Bonnie....with out her even sharing too many words it is obvious she is needing many prayers.
Dalton....Dalton is a little friend who is really needing suppor right now, and prayers. The Drs need to locate the right meds and doses for this littl guy. Pray for his parents too...
Malisa...as she goes through making plans for both baby and end of life. In the middle of making needed plans, she is making the most beautiful plan! and she cold use our prayers.
Clay...Pray that the Drs find a med that will help his body and brain. Pray for his mom that she can fight for their needs and get them done.
Praises...
our faith, our love, good job, roof over our head, and the people in our lives. At the end of a really nasty wrong week, I can honestly say the people who have written us and showed support have meant so much more to us than you can imagine. Thank you for the encouragement and support!
Will upate with more info as we get it....

Wednesday, April 16, 2008 7:13 AM CDT

on to important things...
Kris is home as of midnight. He wanted to be here....why? his room is trashed and it is noisy here but he likes it...so he is home.
I am filling meds today to get the chemo drug for home.
He looks a little better but he is still in a lot of pain in his joints. Hoping soon this med will work and we get positive results.

Tim is growing all sort of things around his tube and now little spots are opening up and oozing. So close to his line...it is precarious at best, so we are wonering what new meds are coming our way....ugh. I V meds always mean long nights and longer days.

It was rahter interesting yesterday as Lianna had a neuro opth apt and got a migraine simply fromt hem flashing lights in her eyes. She spent most of the day hurting and by late afternoon the nausea hit and boy was she sick. Zofran to the rescue and she got a little better...today she already looks a lot better.

Josh is sick AGAIN that kid can never stay healthy. He is the one we laugh at because I dont think a month has gone by with out a cold or flu symptom. He is trying to muddle through last couple weeks at school....on a positive note, he is leaving the church he is in and coming with us to our chuch and will begin working there with kids..AMEN. that is a huge answer to prayer. He has some amazing goals he is working on....really proud of him.

ok, long day ahead with school, nurses and meds....and a Dr or two thrown in.....
Thank you to all the people who sent private emails and wrote in the guest book through this ordeal with kris and tim. It is nice to know you care. and to send e cards and smiles...along with love, respect and support to them.
as always thank you for being on our journey with us...

Tuesday, April 15, 2008 3:45 PM CDT

To the person who is sending hate mail to our personal acct...you can stop. In our posts we state the truth. If you have nothing more than hateful remarks, then you do not have to read. Obviously you have NO IDEA what is going on in the home. And if you are claiming christianity as your faith you do not have any right to be disgustingly degrading or derogatory. Obviously you are from an old church...one that thrived on insults, lies, and the spirit of "unless you have cancer you are not sick"....
enough of it. This is a personal journal, not to make you or anyone feel good about themself. If you have so much energy to spend being hateful why dont you turn it around and maybe do something nice instead...that type of energy actually is productive and changes a life...hate just causes you to be bitter and have wrinkles that never fade....
with that said,
Kris will be home tomorrow. He has begun all the meds and will begin chemo. We are hoping this puts this stuff into remission. He has a lot of pain still, but better than yesterday. He is very sleepy and tires easily with too much movement. Kris's friends have been wonderful to him by keeping in touch by instant message and texting. He has needed that...
Tim remians on close watch with the tube. We are waiting the meds now...once we get back into that grind it will be so much fun to keep up with.
thank you to pastor D, and the people of Kids club...we appreciate all the prayers...



Monday, April 14, 2008 8:49 PM CDT

I just want to update and say how sad today has become...
Kris is really struggling. He is a lot of pain and meds just are not working anymore to control the stuff. So after a lot of discussion and a lot of back and forth, we have all concluded we are left with no options but to begin remicade. This means IV meds every couple weeks. On top of this...he could begin to buld anitbodies to it and cause it to stp working, so they have discussed starting chemo. this will supress his immune system just enough to not build anitbodies to it. so...this is what the plan is for kris. We may get him home tomorrow after the dose tonight of Remicade. He is still in pain and really out of it, but he doesnt want to be there either. He just wants to be sleeping and resting. I agree home may be a good choice for him now.
like I said, it is a sad and tough day...
A positive note, Gwen has been extubated and it is a nice thing to hear. she is still havng lots of trouble but she is off the vent.
ok, I am hitting bed now as I am really wiped out from today...



Saturday, April 12, 2008 8:33 PM CDT

Just want to update everyone on 2 things...One, Kris is back n the hospital. He is very sick and in a lot of pain. He will be in for a while..The Drs are getting more and more concerned about the number of times this has happened to him in a very short period of time...We may be looking at 3 procedures for him in the next couple of days which means MORE anesthesia...each time it gets more and more dangerous for Kris. He does not tolerate anesthesia well at all....
and
we also got word that Tims gj tube site has massive infections going on still but this time the infection is rampant. We are having a care team meeting on monday to dtermine what the next step will be. He is severely nutripenic and having seizures, most likely from this infection blowing up before our eyes....
please pray for parking, gas and costs involved in the hospitalizations. this is NOT a good time for this.
Also, a word of praise...God is hearing the prayers for our little friend Gwen. She is improving and may have the ventilator removed in the next day or so....I will update with more info tomorrow...


Thursday, April 10, 2008 10:21 PM CDT

This update will seem so vague...however I cannot help it.
Things with Tim remain very crazy. GI is pretty much givng up using his tube at all and we are now discussing a new GJ tube next week. We saw the team last wek due to severely low blood counts and once again we have discussed the fact that tim seems to go in and out of Bone Marrow failure syndrome. Hematology is watching this closely. We have ruled out spleen issues causing the count drops, and we have ruled out malnutrition because he is on TPN...they are once again looking for a malignancy. W do know we have to have his eyes looked at by neuro-opth. His left eye seems to not want to react to exam. He also has begun having jerks and severe tremors lately. The jerks are new for us. He had them, long ago but mildly, and now they are back and getting worse. The progression is there, but we are trying very hard to push him to keep going and do normal things. so dont get me wrong, he does a lot! He is helping with the young kids at kids club in church on tuesday evenings. He goes out once a week with a friend for lunch, and then he has friday night youth group. In between we do school work and take some field trips. Yesterday we used park passes we had left over and went to the zoo...today we did minuteman national park Jr park ranger program (100 percent FREE) We have encompased a ton of school work in a few weeks time...trying to finish things before the homeschool convention at the end of month. The school is sending a teacher with me and she is going to help pick out things for tim....she has a budget!..LOL...
Kris will be admitted again to Tufts medical center. He is having intense pain and is sick again with a flair. He looks horrible and is just in pain.
No news on reilly yet. We asked for them to hold off for a couple weeks as I am going to work (writing documents but it is work!) for one week (ok fine it is really 3 days) and we would like it to be after that so I can work...
I am in so much pain again...walking as much as I have is killing my legs and hips. I keep thinking it is helping by moving, but it really isnt.
One of my Drs has done extensive blood work on me and has come up with a plan. we know my magnesium levels are extremely low, but my blood sugars are crazy up and down. SOOOOOOO we have decided I am going to do the ketogenic diet for a period of time to see if I feel better. I felt worse on gluten free. so now I will eliminate all the pastas and most all carbs. Yup I know that makes 5 diets for 7 people...but the idea is to see if doing ALL proteins and little carbs, will force my body to work better. I will be followed closely with labs. This however is going to be a HUGE killer with grocery bill.
I have been cancelling a lot of apts in boston due to gas prices increasing. Just wondering along with the rest of the country when it will end. But the Drs have been good about doing things in bunches or at least by phone.
Josh fell on to his knee and wracked it up pretty good. He ended up coming home one night this week and he is trying to walk with it right now....it is a pretty shade of purple, yellow and red. He is doing fanatastic at school, pulling in A's. He is taking next semester off due to finances. He pushes graduation back a fe months but he cannot pay his school bill unless he works, so he is ging to work, save up to pay down the bill AND put down a pmt for new year.
well...we have one very immediate request.
Our little friend Gwen is severely sick. Please pray for her to be able to come out of the PICU soon and open her eyes and smile.

I guess in all the bad things we report going on, I hope you all see the good we report as well. Little things that tim is doing, those are important. God has allowed this disease to be a part of our life. This disease does not define us or the kids. We have been able to educate because of it....we have been able to share our hopes wih people and our reasons for having peace in it. But beyond that, we have learned compassion beyond what most people can ven understand. I am so grateful for the diseases trials, because by them we have honestly understood how to be available for others. I would not have that different. Do we like Mito? NO....but I am happy that we have the chance to be there for others. "Family" is a joke most of the time, out of sight out of mind has to be there motto for us....but the family we have gotten in return is great. We have nana's, grandads, and aunties and uncles (even sisters and brothers) that are nothing more than friends for real...but they have taken the roles. We even have a mom and dad or two, for us adults....there have been times when I have just wanted to show up at a friends workplace, go up in the office and just curl up in a corner and go into my head while I escape reality!!!!! I probably would be able to! however it is nice to know I could, but I dont need to LOL...not yet at least. To our friends all over the country, and world, we thank you all for the people you are and for the ways you have taken over for the people who have walked away. God promised that if we lose something that HE will provide us with far more. We truly feel like we have a mission we are on...God is providing for that mission and we are being blessed because of it EVEN IF it looks really bad....so as the fist qtr of the year ends, and a new one will begin, we honestly have come to realize God never promised it easy but HE did promise us support.....
Please pray for Gwen. They need support right now...
please hold her close in your prayers. and pray for Clay,cole and jake D. They are dealing with so much...please pray for a DEAR friend Bonnie...I cant explain it but I know she is hurting deeply...please pray for her.
And Thank you Molly...you have been a huge help in the house. And once again...Cathy I love you, you have been my BEST support and help everyday. And honestly if it wasnt for deep love and respect in Rod and I , we would not be here....we have been tested, tried, and beaten down but we have not been broken!!!
well like I said in the start, this really was not a real update as much as a vent!
I will try a real update next time...

Thursday, April 3, 2008 9:16 PM CDT

Ok....
I know...
I really do....
I am updating! It may not be much but it will be an update.
I need to start by saying thank you to a friend for a delicious meal, and the use of a freezer! Now I can buy food and have it on hand so I dont have to rush out and get food every couple days.
I also owe her a thank you for the help she gave me on a crazy day!
now...
I cant get into details yet because all we know is basic info but, Tim will be going to the hospital next week for a new GJ tube, different types of motility testing and hem/onc visit. He is seriously nutropenic. actually the lab report says CRITICALLY low. Yet, he looks ok.
We may have to check his bone marrow again because it is looking very suspicious. his platelets are extremely low as well.
also Tim decided to come up with yet another type of seizure...he stopped breathing. He had a partial complex seizure. He has been having them all week now. It was so much fun to deal with. And it is even more fun as days go on.
Lots of things are going on with tim but burying our heads in the sand is looking so much better. Seems to work for most extended family, so why not us.....

Reilly is getting ready for his admission to the hospital. We are waiting for the dates.

Lianna is out of her cast now, but has a brace she is supposed to wear. She feels much better now, except yesterday when her riend twisted the wrist...then it hurt! but she is much better.

Van is fixed! so now it doesnt whine and squeal as I steer it...

So much is going on right now. Medically things are pretty serious, and we know it. Reilly and tim are keeping us hopping right now. The stress in the home is pretty high. Trying to keep it normal is hard, but we are doing well with it.

I have been blessed by a few friends who are also going through their own issues medically. Please keep our friends in your prayers.
I will say the entire mito community needs prayer. So many people think the disease is just a joke, not really all that bad...but what people do not understand is the fact mito is a killer. Mito is bad. Mito is not a joke. It was said that mito is not cancer...why is it that people have to assume if it is not cancer it is not bad? Well, I am watching friends die, children die. I am watching friends suffer in pain, suffer alone in silence, and suffer without support. Please...please pray for mito and that people will become aware of just how serious this really is.
Please keep praying for our medical team. We need to keep them lifted up and prayed for because their jobs are so important.

Well I am out of time, but as soon as we know more on reilly and what is going on with tim, someone will update...just pray things go smoothly.

Sunday, March 23, 2008 8:04 PM CDT

HAPPY EASTER to everyone...
There has been so much going on the past month but it is just so difficult to even comprehend it all...
First I must say w hav been totally burned by people that we thought were friends and it has made it hard to just shake it off...but we are doing that and hopefully it wont stop us from being who we really are in the future.
Beyond that....
I had been trying to address Reillys activity level and his learning issues surrounding that for a while. He is definitely innatentive and hyper a lot of the time, yet he has an energy production issue....hmmm how can that be!??
He has been asking to rest a lot lately but he has been playing hard too. I decided that after numerous medication trials for ADHD and it wasnt working, that I had to proceed back to the neurologist we adore. He made an apt and saw us on friday the 14th. He was with us for about 20 minutes and said " would it be possible to come back on tuesday morning at 8 am. I have no clinic that day but someting is very wrong and we will discuss it then" This left me worried....so on tuesday rod and I BOTH went. Come to find out Reilly had failed the neuro exam, he has left sided weakness and it was caused from the anesthesia he was under back in november at MGH. He woke up unable to use his left side for 3 hours....now it has left him weaker on his left side....the Dr said it uncovered a brain issue/injury that has been present at birth. So then he asked us to please bring reilly back again on friday afternoon for grand rounds. We did. Once again he failed the neuro exam. The concensus is that reilly is having seizures on top of a brain injury.
The one thing I did not get addressed was the ADHD issues. He is so active and it is hurting his learning. They saw that. They will offer help but we need to get medical things in control.
So we wait for more teting and word on Reilly.
Tim has had an active tube infection still/again and required oxicillian. He was fine on this until the last couple days and we had bloods drawn and his platelets FELL to nearly non existent. We had to take DIC precautions. It ended up being after all the testing was done, that tim is allergic to oxicillian and can not use any meds in that class....GREAT...we just wiped out a ton of good meds because of this stupid ongoing infection. THEN they are pushing trying the tube again for feeds, and he is throwing it up....but we tried erythromycin, and he got hot flashes, bright red and sweaty from it....another med he is allergic to....I am starting to hate GI right now.
we lost a ton of meds that we could have used. right now he is tired a lot, sleeping and just not really himself. We are trying to keep him alert and busy to keep him awake. It works for most of the time but not all day.
Kris is really struggling with pain. We are weaning the prednisone no matter what. he already has bone loss and it was making it worse, but his pain s increasing and he is sleeping a ton. He has begun bleeding again too.
Lianna got pushed down a bit ago and broke her arm, has a beautiful full arm cast and is complaining it hurts still. every time she moves her fingers up and down it cracks and pops. We go tomorrow to get it off and hope we canjust do a brace. We may be forced into a short arm cast, but it was a small growth plate fracture so maybe it has healed enough to just brace it. She has her new CPAP machine and loves it. she is sleeping well with it.
Josh is doing great at school. He needs to have both shoulders operated on, and he has found he cannot tolerate certain foods since his stomach surgery. poor kid. but he is doing well and loves school. He will have to take next semester off as we cannot afford to send him and he needs to pay off this year first so he can do the next semester in january of 09...if he can pay this last one off. but he is not worried, he just wants to get his degree.
Rod is doing well. He is working a TON of hours per week. Hopefully the people above him will reward this at some point, but it is a great work ethic and I am very proud of him and what he gives of himself to anyone who asks.
My apts lately have been very scary as well. I have symptomatic bradycardia. That means each time I have a stressor or am sick, my hearts slows right down. My head is not working right, and is causing me to lose words in random conversation. The Dr said "sweetie people wash their clothes in a washer machine, not a dishwasher." ya, I know that...duh!....it is hard to say it with out planning it. My right side is giving me problems, but my arthritis is still really bad. We found out my magnesium is on existent, so I am on mega doses on mag now. hoping t helps some of this.
Please pray for a few of our friends who are hurting right now. Craig, Dalton, Donna, Dave and Keith. pray for peace and healing there.
Pray for Bonnie. She is sick again with a new infection and could really use some pain free healing. Pray for her mom and dad too.
We have some needs here that could use prayers.
we need to get the van fixed but I cant be with out any vehicle. So pray that a time gets figured out soon that we can have a few days of no apts or emergencies so I can do it and then pray it doesnt kill us when we find out what really needs fixing!
Here is a silly request but it has a lot of consequences for us...we need a shed. We need to get the things we put in storage 3 years ago, out. it is costing us money each month that we need for gas and food. Please pray we can do that so we can stop paying that storage fee each month.
We did our taxes and as we were figuring out the medical out of pocket expenses we nearly choked. $20,000 was the amt WE paid out of pocket this year alone. This was more than 1/3 of rods income....pray this new year brings us a healthier year!!! so far it is loking like we will top that, but we can pray for a better second half! The driving this month alone has been 3x higher gas price than normal for us. We cannot keep this up yet we have no choice at all. SO we eat less and squeeze the last drop out in order to stay healthy.
We want to Praise god for everything that has been provided and the fact we are all here in the house this weekend. I also want to thank God for the people who are int he house helping us on a daily basis. We have an amazing friend who is here everyday and is just like a mom to the kids (and me) but she is my dear friend. We also have a wonderful nurse. She is so sweet. So we are very lucky.
We are extremely lucky to have an amazing church. This church is the best thing that has ever happened to us. It is amazing to watch your kids raise their hands to Heaven when they are singing, and even more amazing when they want to help out with programs involving others. It is nice to walk into a church that is FULL of REAL people and know they are not liars or people who judge. They simply love and care. This church is a God send, this church is a huge Blessing to us.
So anyway, that is the book update for this time. I am finding less and less time to actually update weekly, but I am trying to do better. This past 3 weeks I have been in boston EVERYDAY and the days are long and exhausting.
I will try to be better...
Never forget what Easter is about...Jesus cared so much about YOU, that he was beaten, kicked, punched, slashed, spit on, hung on a cross by his arms wrapped around wood with splinters, nailed in place, almost naked, bleeding and sweating in high heat, sweat pouring into the cuts to burn, teased, mocked, watched his mother cry, then died....thrown into a tomb, cold and dark without air....but instead of letting that ruin Him, or end everything, HE ROSE. He did this for YOU. would YOU be willing to do it for your friends? or what about doing it for Him? All HE asked us to do was believe, and repent....after knowing what He did for YOU, are you even willing to believe in HIM?
Be blessed today and enjoy the season...
Until next time....

Wednesday, March 12, 2008 9:51 PM CDT

I am at a loss as how I can be uplifting and positive with this entry. I dont even want to enter it, but it is what is going on in the house with us all and everyone keeps asking me to update. So here it is and I am not sorry that it is not all that encouraging.
I went back to one neuro guy and all the problems I am having that seem to be getting worse are definitely related to a stroke that I had, resulting in brain stem damage. Second guessing myself when I speak, losing words, needing more sleep...all of these things are so frustrating. Then the frustration just leads to feeling horrible. Plus the amount of pain my legs are in is getting really old now...just no ending and I am retaining a ton of fluid which is causing a LOT of swelling. Thank goodness for the elevator. I can not even go up or down a few steps right now.
Kris is still bleeding...alot. I am at a loss and Rod is really upset by it too.
Timmy is having another active infection needing IV antibiotics and now we are hearing how his tube may need to be removed and allowed to close. My anger is high on this. I hated the gtube, but grew to love it because it was so helpful during illness and with getting things into him. My anger lies in the facts that Tim got sick BECAUSE we opted to do the big surgery on him and have the tube placed. He began having seizures and ended up shutting down his entire gut and it never recovered. GUILT...yes I feel terrible guilt over it. I asked and asked doctors if it was needed, and was it the right thing to do. I was told yes, and we went with it. I am so angry that surgery took away my fun loving and happy son and left us with a mere shell of who he was. I love tim for who he is, but really feel like what we did to save his life, ended up taking a huge part of it away. And sadder still is the fact we have family who sit back and dont even care to know truly what is going on in our lives...an occasional "whats up" or the obligatory "I am thinking of you". Frustrated because few in the family takes the time to learn what Tim is now, or how this disease affects his life. Just frustrating.
Tims tpn has been changed to handle his ongoing changes and it seems to be making improvements in his blood counts.
Lianna now owns a full arm cast becaue a neighbor boy decided it would be fun to push her down and jump on her. She has a buckle fracture of her growth plate in the wrist, and a sprained elbow. I just feel so bad for her. She has spent 3 days in tears because she wanted a pretty easter dress to wear while she sings in front ofthe church on easter sunday...now she wont go in front of the church. it is awful and sad.
reilly is doing well, we see neuro with him tomorrow. Hoping to get more answers to help us get him rest....
Please pray for us over the next few days. we have MULTIPLE apts over the next few days. gas prices have gone up so much, it is killing us. We have already done 4 trips into boston in 3 days, plus local things. I cancelled a lot of things next week because of the gas and parking fees.
Sorry for the very upsetting attitude I have, it has been a long week, I am tired and hurt. I know God is here with us, I would be lost without that knowledge.
I will update when we get new info.

Sunday, March 2, 2008 1:20 PM CST

I know it has been forever...and I am sorry.
I simply have felt awful and just needed down time to recouperate.
Kris had his appointment in NYC at Columbia presbyterian hospital (8 hours!!!) and it was really nice to be back in the city but not on that day! it was snowing hard and miserably cold. It took no time to get there, but the roads were just horrible to even try to walk on....forget rolling on.
The Dr was happy to see us again, we had seen her a lot about 5 years ago. She is very knowledgeable about autoimmune and immune issues...she did a complete workup on Kris and truly feels his needs would be suited best by using remicade. She also suggested PT and did a bunch of lab work and xrays (hips, legs, ankles, wrists, hands, neck and spine). We got the results of the Xrays and they show osteopenia. Shocked!
We had a very nice time visiting our friends in NJ and stayed with them overnight. It was great to catch up and just talk.
So we are back home and we spoke to GI and they agree we need to begin remicade. There are many issues we had to consider firt and we are praying that we can avoid some of the serious side effects. Kris goes in to have a scope on thursday to see if the chrons or colitis is further up then they think and then we will begin remicade soon after.
I just feel bad for him. He really is trying to be positive and we are trying to keep it normal for him.
Tim is holding his own. He is not eating much. The drs want to challenge his gut again, and see if he can tolerate any J tube feeds. Tim cant tolerate his meds given that way and we are really hoping this works. This is something I had wanted to work on a year ago and not do TPN, but was not given a choice. So I am going to try and inch up some feeds and see if we can do this....if so we may be able to get him back to fluids only...or at least mini tpn!...his IQ was retested and he has lost a lot. He functions like a young child but also has higher order thinking skills in tact in some areas. We had tons of testing done and found that he can work in patterns that are high skill, and yet he cant figure things out. His frontal lobes both side are damaged. The school comes in 1x a week to help me out withhim and they are baffled byu it all and the see so much more than even I do educationally and they are just offering supports now.
Lianna is holding steady as well. She has a lot of pain in her legs and joints, but she is doing well health wise. Her headaches remain a huge probem. She has had her meds increased. She is ok, but then she excercises or just plays and get horrendous head pains. She gets nauseas and ends up on zofran. It is a cycle we would like to break.
We see the Dr in a couple months to get some more help....we have a plan in place but we are seeing nothing as of yet.
reilly is going to go to neurology again. He is twitching and jumping like a mad man at night. He tested positive for sleep apnea.Periodic breathing he finally outgrew! phew, it is a preemie thing they eventually outgrow but it took him 6 years. His little calves are cramping still, and we need to work on nightime pain relief so he can sleep better. Hoping also to tone down the day time chaos. He is so hyperactive and yet he is tired easy. He loves to play and is so much fun to watch. Everyone loves to be around him. lol
I am getting back on my feet. in between being sick, and going to Drs all the time, I am exhausted. I sleep a lot if I can, and I am trying to get my body back to movin a bit. I have tremendous pain. My hips and legs hurt so bad. If I am on the floor I cannot get up anymore. I need to crawl to a chair or table to get up. I was told it is burcitis and arthritis. The Dr told me on friday to go to a warm location to see if it improves and to consider being a snow bird next year. I have kids, cannot do that. She said it would only get worse....think I need a new Dr!
I dont sleep well from the pain, heat helps and that is all I can do for the pain, plus pain meds. If I move around enough the pain is not real bad, but if I try to sit or lay down it hurts to the point of tears.
Add to all of this, the freezer we had, died during a storm that the power surged. It ended up blowing it. Unfortunately I am not thinking much and found out 3 days later and only because it defrosted all over our garage...o ya, I should mention it was full of meat....a FULLLLLLLL freezer of meats. so I am now freezerless...life is so grande.
Another really cool thing happened....My friend Stormy is friends with Mark and Melanie Hall. Mark is the lead singer of Casting Crowns. My kids all love the group and I am pretty taken with them too. Love the music and lyrics. Well anyway they came to mass. this past friday and had given us 7 tickets to go see them. We had a meet and greet in the begginning and then got autographs. We stayed for the concert and got over at 11:30 pm. Reilly was so excited. He fell in love with the guitar player. The older boys were totally taken by the drummer. Lianna loved the girls and talked to one of them quite a bit about her injured wrist and lianna got to share how she hurts too..lol...it was a really nice night and it was LOUD. Reilly kep saying the beat was making his heart bounce...you could feel the bass in your gut! it was so much fun. We had great seats 19 rows from the stage. We left the concert and there was a ton of snow on the ground...it was so nice to walk out in the late night hours after such an uplifting night and see snow falling over the mountains...it was so pretty....
anyway we are home now, very tired from a long month of february. We begin march planning for kris' future with this disease, and also planning for josh's 21st birthday soon.
As hard as it has been with everything here it is nice to know that God has never left us, never forsaken us and will always be there no matter what we go through.
Please keep all our mito friends in your prayers, too many to name.
Please also pray for Rods job to level out soon...he is trashed!
please pray for each other and dont forget to Praise God for the ability and freedoms we have to do so...
I will try updating before another month passes!! sorry!

Thursday, February 21, 2008 7:10 AM CST

quick update..
we are heading to NYC for Kris to see the Dr at columbia presbyterian hospital.
This child is in horrendous pain and the bleeding is still going on. We need to stop this stuff and we need to fix things now....
we have had one heck of a week....
the freezer died and we lost our food in it..so I am done with freezers. I will shop every few days. I cannot afford to lose gluten free foods. plus we lost tons of meat. SO I am pretty disgusted over that.
Tim is sick now. Coughing and congested. He has bronchitis and a sinus infection. I am still sick and on my 3rd antibiotic. This one is helping a bit more but I am not over it all yet.
I have been quite frustrated over things lately that are out of my control, but trying to function...
Lianna saw one of our metabolic team Drs and the poor kids amino acids are so off...she really is in pain with her muscles and it was found her CPK levels are always very high and she has myoglobin almost always. SO the pan is to super hydrate her with special fluids daily and add some more medicines and hope for an improvement.
Well I am off to NYC and hoping to get answers to Kris's medical issues....this just has to be a positive visit!
I will update ater when we are home...btw, that is saturday.....we have a LONG day tomorrow...

Saturday, February 9, 2008 8:00 AM CST

I want to share a Blessing....Blessings do not have to be huge or even affect anyone other than a person or two...and this one affected me more than almost anything that has been going on for a very long time....
A while back I shared about Reilly and the fact this poor baby is losing his teeth but they are not coming in at all. His nutritional status is pretty poor due to absorption and the fact he consumes and has to consume TONs of fluids and I refuse to think about a g tube. So, he and I were talking and I told him when the teeth come in, it means he is growing up and becoming a big boy, and right now he is still my little boy, and his big teeth just are not ready yet...then he shows me a boo boo on his lip from hitting his lip to liannas head (dont ask..it was a doozie of a story) and when I looked I found TWO little teeth poking through his gums! one on top and one on the bottom!!! There is another one real close to popping through in a week or so...I was so excited, he was thrilled. He just got a huge weight off his shoulders. at barely 6 he was saying he thinks kids feel he is freak cuz he had lost his teeth and they were not coming in!...my poor baby! so this blessing just hits me harder than anything else at this time and I just wanted to share. God did not hve to dum a new home in my lap, all He had to do was bless me with two little white stubs and I am on top of the world!....
ok, now back to the flood damage....it is being worked on....but it is not good. so for a tiny bit, I am going to focus on the blessings we have been given just today!
I will update more later.







Wednesday, February 6, 2008 8:21 PM CST


when it rains it pours...or in our case it FLOODS.
Yesterday I was so very sick, 103 temp and could barely function. Ended up being taken to the hospital and had xrays done. I have aspiration pneumonia...AGAIN. Cought it early this time so I should hopefully recouperate faster than last time. I am still running a fever, coughing and choking....I have ZERO voice as I have injured my vocal chords from coughing.
Once I got back from the Hospital, I decided to head to bed (actually no decision really, I just had to get there), and Rod had the kids out to Kids club at church....
when he got home Lianna was in tears as she found out the dog peed in her room...on her carpet...in her words "the WHOLE carpet dad!"...so we told her to lean it up because she keeps locking him in there..her problem not ours!...so 15 minutes later (this is now 945 pm) she comes up in TEARS TEARS TEARS,.."dad if the dog is up stairs how can he keep making my floor so wet!!!!! I clean it up and it just keeps getting soaked"...at that point Rod gets out of bed to see why Lianna is so adamant her entire floo is soaked....
he comes back upstairs about 30 minutes later, and says "honey....her entire floor is wet" He then informs me that the well pump line has a 1/8 inch whole in it and water is POURING out of it under pressure....and Lianna's room is filling up as we speak...so he shut the entire house off from water, and we assessed damage today. We had the plumber here and he had to remove a few feet of pipe, a couple new valves and chkd the other pipes as far as he could see them...THEN, we assessed Liannas room. We opened the door and it smelled rancid! soaking wet carpet, destroyed....soaking wet carpet pad, destroyed....bed and trundle, wet and no choice but to salvage....bureau was wet, but we need that too....all her stuffed animals soaked but we managed to have them cleaned today and dried up....
Hallway tiles soked underneath and need to be removed...Destroyed!....UGH....We have fans going, and sprayed everything downstairs. trying to dry it out.
dealing with that and we had kris in boston for his appt with metabolic. We need to get him back to Columbia presbyterian hospital to see the Dr that we saw years ago that really settled him in to a good healthy routine. We go on the 22nd. we will have to stay in manhattan overnight for appt and testing.
Josh got word on his CT scans for his shoulders...BOTH shoulders....
His lef shoulder has both Labrum muscles ( anterior, and posterior) torn....Right shoulder has the anterior labrum muscle torn. Left shoulder will be operated on May 28th and then the right will be done 6-8 wks later. Problem is, Josh does not have full medical coverage....his last surgery we cant pay for yet!...
I got the call from Waterville valley ski program. They are giving the kids an entire day of adaptive ski instructors. So we are going to be taking them up there next thursday for valentines day and they will be able to have one on one adaptive instruction. Our favorite Dr was able to arrange all of that for us by pulling some major strings and friends in high places....I just pray tim, lianna and reilly enjoy it. I will enjoy sitting and watching them have fun.
ok, my head is pounding, dizzy and coughing fits are killing me right now. I really need to sleep again. Seems that is all I am doing. At least tonight I get to have water available.

Good night and I hope next week we have some GOOD news to share.

Monday, February 4, 2008 8:44 PM CST

Please pray for Donna tonight. She has a 102 fever (on motrin) and is having a lot of trouble breathing. Looks and sounds like pneumonia. We are going to get her to the doctor tomorrow.

Lianna went to the Dr. today because she has not been able to move her bowels for several days. The pediatrician found that her thyroid was also enlarged, so she was sent for bloodwork, we will get results tomorrow.

Kris has started with bleeding again, so we are running out of options for anti-inflammatories. The doctor added some prednisone to his dose. The difficulty is that many of the remaining classes of meds have significant side effects, liek bone marrow suppression.

Josh is waiting for results from his shoulder surgeon regarding his separated shoulder. This was his 'good' shoulder, not the one he previously had surgery on.

Wish I had some good news to pass on. maybe next week...

Saturday, January 26, 2008 10:24 PM CST

I know...I know...I really do get it!...I have not updated in a really long time. I am sorry...things have been rather insane.
first, medically things are unstable with me, and with Tim.
I have had pain consistently since beginning of the month. Walking is not so bad, but sitting or laying down is horrendous. I am not sleeping well at all, and sitting really hurts all down my leg, from the spine. In order to sleep I need to do so with heat, and not flat. Not getting more than a couple hours a night. Not the way to live.
Tim is just not himself. Blood counts are falling again, but we are just trying to make life normal for him. He is not eating much by mouth as he just doesnt feel able to eat. but that is ok because Kris is more than making up for him in that dept. He is on steroids still and he is STARVING from them. We are reducing them slowly but he is puffy and eating everything that looks like food.
Josh is doing well since his surgery. Finally able to eat again, and no pain. It is really nice to see that for him. He really needed this done. He loves school, and is doing well.
Lianna is the one who is hurting too. She has all her joints causing her pain. She has loose joints that are slipping out and she really is just uncomfortable.
I have a YMCA membership through a scholarship program and hopefully I will find a few times per week I can get her in the pool swimming.
Reilly is flying around like a mad man. He is so hyperactive but then he suffers in the night time. I feel so bad for him...he deserves a break. He still requires so much fluids over night that it has me waking up to take care of that. So with that and pain, there really is no rest. I figure I am getting 3-4 hours of good sleep a night. I rest the other hours but I do not get full sleep.
We finally have put up pictues that we got for christmas, on to the walls. And all my decorations are up on the walls. so now the living room looks like it is almost complete. we finally took down christmas tree and decorations last saturday. That was sad. I love christmas and if I could have the lights and tree up yr round, I would. I just love it all. It is so magical to me. That is why I love going to a city at night. I get to see the lights. I am a cheap date!...
I guess there is not much more that I can update but to say we are struggling to stay healthy and struggling to keep going.
we have some praises and requests we would like to share..
pray for Kristin K. She had heart surgery this past week and is in the process of recovering.
pray for Clay D. He has the chicken pox, on top of all his other medical issues and is really uncomfotable. Pray nothing serious comes from this as a complication.
pray for our friend Keith H. He is struggling to keep going. Pray he remains strong for his daughter and girlfriend.
Please pray for C and her mom and dad. They are hurting in many ways right now and need a guardian angel to just come and help them.

Praise God that Bonnie is home. Bonnie had surgery and many days of pain. She is recovering now at home. Praise God she is still with us.
Praise God and through tears I will say that my friend Heidi is do so remarkably well. I know the secret to her success is heather is watching over her and giving her strength. Heidi has defied the odds and amazes me so much. I miss her and when I see her, will be overcome I am sure. plus she owes me a coolata so I am going to see her and make sure I get it! LOL..
I am really praising God that as bad as this past year has been God has allowed Tim to remain with us. He is here and it may not be perfect, but he is here.

We are so lucky to have our Drs in place. One of our Drs has suggested taking the kids away this winter and he is helping us find something. We are looking into an adaptive ski program for a couple days. Right now it looks most likey it would be at attitash or waterville valley. Once we get the word on that, we will hopefully be able to get Lianna and Tim to do that. Possibly reilly too. Just not 100 percent sure yet. The idea is to get them out and have them use their bodies with assistance, to try and coordinate muscles that have not been used for a while. It will help the brain heal for Tim, and give Lianna a feeling of control. It is a 2 day program that we are having them look in to. Once we know, I will let others know. Dr W is a huge help with things like this. He knows everyone in the physical medicine world. Or so it seems.
anyway that is about all from here...


I learned that life is not just a destination but a journey.
While the expedition can be long and arduous, it can be full of
beauty and pleasure as well.

-- Wayne Holmes

Saturday, January 12, 2008 8:32 PM CST

I would really appreciate some prayers for myself. I know, selfish.
However, I am in a LOT of pain and walking is very difficult formt he pain, as is sitting, or laying. My hips, legs and feet hurt so much. Nothing is touching the pain. I have had chest pains all day long and they are not going away easily. Pain meds are not touching this stuff, and I am sure weather is not helping.
There is no way to even get to the Drs until (earliest) Tuesday.





Thursday, January 10, 2008 8:55 PM CST

So so many thing have taken place over the past weeks that it would be near impossible to explain it all with out sounding like we are complaining....but we arent.
Well, I finally got my license and I got one of the Credit Cards that was stolen, back. It took 14 days but they finally arrived and now I just watch to be sure that the credit report doesnt get destroyed by someone. The police were good about helping me report a bunch of stuff. So anyway as bad as it was and as traumatic as it was...No one got hurt. For that I am grateful.
Tim is haing major set backs. We are wondering if we are seeing mini strokes. MULTIPLE mini strokes. Some are obvious seizures but others..well we just do not know. We are waiting for answers.
Kris is improving but will be on steroid treatment for a VERY long time, and other meds for life.
I have had to begin cking blood sugars again. My blood sugar was very high and I was having problems with it. so I had to get insulin. Now I am rebounding low...this is fun.
Well. I wanted to update a lot of stuff, but I am not going to go into a lot of the bad stuff...I just want to share something that has really been my focus these past weeks.

Have you ever heard a love song
That set your spirit free
Have you ever watched a sunrise
And felt you could not breathe
What if it's Him
What if it's God speaking
Have you ever cried a tear that
You could not explain
Have you ever met a stranger
Who already knew your name
What if it's Him
What if it's God speaking

Who knows how He'll get a hold of us
Get our attention to prove He is enough
He'll do and He'll use
Whatever He wants to
To tell us I love you

Have you ever lost a loved one
Who you thought should still be here
Do you know what it feels like
To be tangled up in fear
What if He's somehow involved
What if He's speaking through it all

His ways are higher
His ways are better
Though sometimes strange
What could be stranger
Than God in a manger

God is speaking
I love you

God Speaking by Mandisa
This song was playing a week ago and really just hit me and I felt like maybe just maybe all the bad things are a part of the things we have to go through while we learn how to rely on what God desires for us. We will never be rich. We will always live check to check ( and behind some weeks) but God has allowed all that to get us to not be complacent.
I dunno...I just think maybe having Mito and having a child lose so much mentally and physicaly, maybe THAT is what is needed to get the job done that we were put here on earth to do....I have no real idea what that may be, but it just seems we get hit repeatedly, but for some reason, we are not hit DOWN...as horrible as the past year has been or even the past few years, I also have to admit the joy we have found is really quite amazing. When we cry, we also laugh. When we fight, we also heal...for every bad thing, we have had a blessing occur. So God is speaking through every last thing we have had go on....
For the next week, I have a few Dr apts, possible testing to assess Tim and his brain. Many school lessons and also my own apts.
please pray for Josh in school...he is trying to get a loan to pay for the semester as we cannot help him anymore than we have.

Please pray for my friend Bonnie. She had her surgery and she needs prayer for pain relief. and for complete healing.

Please say a HUGE praise for our frends Tim and Lori. C is home and doing fairly well. They may only live a few miles away but the are going through so much. please pray they can stay in their rental....pray that they can emergency food and expenses for bills. Pray theat they can overcome the fears they have still. Praise God C is home and happy...they need peace and quiet moments together.

There are so many other people going through so many things, please pray that people can find more answers to help families with mito.

Sooooooo, on that note, its been a log day, long week...off to sleep now! Thanks for checking in with our random thoughts, some days they can be quite scary!..

Wednesday, January 2, 2008 9:05 PM CST

Welcome to 2008

Today was both good and bad....
Good was the fact my wallet was mailed back to me....Bad was the fact it was empty except my teacher ID, science museum membership card, and license...but not one credit card or gift card......ouch.
Good was the fact we had an office visit not an admission...bad was the fact it was more progression for Lianna.
I could keep going on and doing bad and good, but the fact is, so could most people.
Today Lianna had an neuro opthamology apt to look nto her eyes and do some advanced type testing to see what if anything is making her migraines worse....lo and behold, we got a partial answer. We had her seen 6 mos ago, and she was perfectly fine. In past 6 mos, she has developed weak eye muscles. The Dr said he sees this with some of the mito patients. He said her muscles are working very hard to see up close and focus, and in the process she is over doing it. Her eyes are struggling and she has increased migraines from it. So we had to go and order glasses, for now a single lens but they said she may need bi-focals!!!! I almost lost my lunch when I saw the cost of glasses!!!! geesh...for a kid!
anyway, they will be ready in a week...and we start our fight of compliance, although she did pick a very cute and funky pair.
The Dr did stress her migraines are not from the eyes and we need to see neuro to up her meds again...also suggested a long term EEG as it may be another reason she is having them.
Kris is home now and doing ok. He is having small bleeding but nothing really out there like last week. He is still not a hundred percent back to normal but he is getting stronger....
One thing I have made a concious effort to do this week is not worry...I have decided to follow the diets for everyone to the T. I went grocery shopping and spent almost $350.00 to make sure everyone had the exact diet that the Dr ordered...Kris was not too happy but he is doing well with it. kris is soy only....reilly is absolutely no soy. I am doing almost everything gluten free, fresh veggies and fruit. no dairy for kris, or reilly, limited red meat, 6 oz of chken, or turkey for kris..reilly zero turley or chicken, and a few ounces of red meat per day...hmm interesting huh?
anyway, I am doing it if it kills me. I will be focusing on the health of the diet. I cannot do anything else for the kids right now beyond this. I have tried very hard to do things as best as we could financially...but as the social worker at the hospital said..."having your household bills perfectly up to date is not as important as having your kids alive...." and she is right. I have worked veryhard to maintain up to date, and keeping food budget to 80-100 a week....not suffering for food, we eat very ell, but not what they are able to eat best. we owe it to them all to do what works...so we are....that is my goal for 2008...to at least give it a chance.
Josh is getting ready for school to begin....I am thinking about taking another part time job briefly in order to pay for school deposit. If it works out, it will be good, if not...well.......well, I dont want to think that way.
2007 was not horrendous...it could have been better, but God never once left us. He gave us so many blessings, despite all the issues that came our way too. I have the best friends. I love my friends so much. I am blessed by them daily. So for 2008 my prayer is that mito is recognized by many and that research finds a way to seriously help this, or even cure it. FAR toooooo many people have lost the battle this year, many more are struggling...I just pray for awareness and help to come to mito patients.
Blessings to each of you for 2008....HAPPY NEW YEAR!!!!!!!

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