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Sunday, December 31, 2006 5:43 PM CST

As 2006 goes out, how can I not be pleasantly happy that God has given us one more year as a family. The blessings that have come this year have been many.
Right now we should be homeless and hungry, cold and sick. Instead people have come in to our life that have given us help, food, and the means to keep health insurance. The grant that we got for our addition was from a foundation that NEVER does something over the amount of $15,000. But somehow they chose to take on a $200,000.00 debt. Gods handwriting is all over this one. If these people were not touched by God and in turn brought into our life, right now we would not be here....we are alive, healthy, and fed, simply from people who have given of them selves to a perfect stranger....thank you to those people.
This year we have stared death in the face, and we won. It brings a new appreciation for simple things...it also brings a new appreciation of times together.
As we begin 2007, we do so on a make a wish trip. We know why we have this trip...it is not a "vacation" as some would call it. This is something not given to just anyone. There are reasons for this. We are blessed with the fact we can do this. We also know reality, and the fact we have only right now promised to us. No one can promise tomorrow. We look forward to 2007, with the hopes that a cure is found, or at least better treatments. We hold out hope that we will all see 2007 in and out, together.
This year has had a list of emotions but the ones that matter the most are the ones of Blessing, friendships, and family.
Thank you to all who have given us a piece of yourself, as it has helped make us whole.
I will update on health issues later, I just wanted to end/begin the year with a note from the heart.

Tuesday, December 26, 2006 6:27 PM CST

We made it through the holiday. What an amazing day with everyone here.
The latest after todays office visit is this.
He has bacterial overgrowth in his GI tract, and he also is fighting a viral infection. These are both causing his bone marrow to be suppressed and his cellular number are weak. He actually "looks good" as everyone says, but the Dr made a comment today that shocked Tim just a bit. He said "Tim you looked great about a month ago as you sat here in front of me, and within 2 hours you nearly died on me....so I cannot go by how you look! You very often fake us out"...Tim looked at him and said "did I really almost die?" And Dr Chung says to him "absolutely Tim....which is why we are working very hard to do things the right way now..." and Tim just looked at us both and said "suddenly christmas means just a litle more"
He has been struggling with his mortality this week and he really has tried to be healthy in his choices and he is moderating how he does things. He knows his limits and he really is taking control of how he is feeling.
Christmas was really quiet and for a day it was nice and peaceful.
Our prayer requests are this
Rod- job hours pick up or, that a call that came in to him will come to pass in a new location.
Tim- he can be strong enough to enjoy this trip of Lianna's. and that this infection will go away so that he will get strong again. This is too many close calls in a short period of time.
Lianna- that she will enjoy planning her MAW trip and that we all will be a huge support to her while we are there.
Reilly- his leg pains are increasing this week and it cant be weather related! we have had mild weather...so pray he improves without too much medical intervention.
Me- My tests are ongoing and choices need to be made. Not looking forward to the choices I have but trying to keep an open mind.
MAW trip- pray for the budget numbers to not be changed too much due to the fact tim has to drive. we will be nervous until end of week when we find out what our budget will be.
Praises are:
The addition is open and being used. It is BEAUTIFUL...we all agree we have nothing nice to put in it and we would rather put pillows on the floor as our stuff doesnt seem worthy of it! LOL...But it was such a blessing to watch tim put the lights 0n the 10 foot tree. We have much to do for finish work, but we have been blessed.
We have heat, shelter and food, and no matter what has happened we seem to always have our needs met. Sure there are wants that are not being met, but our needs are fully met and for that we are amazingly thankful and feel especially blessed. We are not here on earth to get everything we want!!!
we were all here for christmas together. God supplied that for us..Drs and we were very concerned about this timing...and yet God gave Tim the strength and we were here together.
we praise God for our friends! they are so special. I am not naming them all, but you know who you are. Thank you for just being part of our lives.
So when going through all the blessings for the year and all the setbacks, the things that remains constant are God, and our true friends.
I will update more end of week after we see the specialist again, regarding Tim.
until then, be blessed by the remaining holiday season!!!

Saturday, December 23, 2006 7:32 AM CST

UPDATE 4:30 PM
We took Tim to the hospital for blood counts and once we got home they called us back in to repeat them as "they couldnt POSSIBLY be right." So off we went, and then when we got there we were informed that he needed to be typed and cross matched with the blood blank. seems his blood counts are extremely low in their estimation.
So they repeated them and they arent as low as they thought, but they still remain lower than he should be and they want us to keep him with the band on so that he can have it done fast just in case.
that is the latest. It doesnt look good, but we are keeping him home. right now lots of things are just going poorly...but they all agree, we still need to keep him home for the holidays.



Tim is struggling to feel better, and his blood counts were finally not dropping as of last evening. We havent heard anything on the cultures yet, BUT they do let them go for 5 days to look for a little tiny bug....the concensus is that we caught the start of the line infection coming back into his blood. He has total gastric shutdown and is only doing IV feeds and some clear liquids in his tube. We were told no food so he wont be forced to use the stomach to work digesting food...it needs to rest and see if we can jump start it next week.
I spoke with Dr korson as he is sort of the coordinator of all his care anyway, and he gave me a long list of "to-do's" we simply want him home and enjoying the holidays with us. And Dr korson totally agrees. He also said "keep him home, we will work it out there unless he is septic, and then plan on going to disney still because it will be important for all of you to do this. we will work it out if something goes awry. enjoy the moments as a family".....see....I knew something was up. He really is trying to have tim enjoy his life and he did stress we have to work on things after this stuff settles down.
We go again in an hour to get more lab work drawn and if todays counts remain the same OR go up, we are in the clear. If they go down yet again, we are in trouble.....we will discuss our options then.
will update more later.

Thursday, December 21, 2006 6:49 PM CST

MORNING UPDATE:
He slept most of the night with a few times waking up. No fever, no sign of infections at all. He is as pale as can be and looks horrible. His repsirations are fast (21) and when he is sleeping they go down to 5-6. Something is definitely going on, just no idea what it is at this point. We have to take him back in today to be "eye-balled" as they say. He will likely get an x ray to look at his stomach. It has been pretty tight lately and the thoughts are swirling that he may have complete gastric shut down. This cold also make the klebsiella come back. Generally when we begin IV meds the infections begin to clear up on cultures with 24 hours and we are hoping whatever this ends up being, that it will respond the same way. As soon as I get back from the Dr, I will update. Thank you all for the private notes and prayers...


MIDNIGHT UPDATE:
Tim is now home all snuggled up in his bed. his blood counts are very low for certain things and it could go either way right now. The Dr is concerned that a very nasty bacterial infection is causing this, but it could even be as simple as a viral infection. at any rate, given the fact he just nearly died from his line infection, they have decided to put him right back on the meds that the bacterium responded to last time, just in case. I feel better now that something has been started, but I am nervous his blood counts are low.
all the Drs agree with us, Tim stays home unless he goes severely septic, or completely crashes. We want him here and we are equipped to take care of him just as much as the hospital. Looks like I will be up watching for signs of line bacterium....off and on. We also need to watch for bleeds, internal and external....so please keep praying, this looks to be a long 24 hours till we get the results back.




7:50 PM

Tim is on his way to the hospital. He is having blood cultures drawn and starting right away on ceftriaxone. his platelets are droping again and this does not look good....we NEED to get through christmas!
please keep him in your prayers.
will update as soon as possible with any information.

Tuesday, December 19, 2006 8:33 PM CST

I know...I know....I am not being very good about updating. I apologize.
I have had a few of my friends ask me if I lost my ability to type, and I got the hint...I will update!!
We have been doing a lot of the finish work on the addition ourselves. Well I should clarify, it has been Rod doing most of it, but I have had a say ;)
Josh is not feeling so well right now. his stomach is truly giving him some trouble and he is going through finals at school. He is doing very well and is worried about keeping his grades looking impressive. After the wish trip, he has a few tests they need to run on him to see what his motility and Gastric emptying look like. Hopefully he can keep going at the rate he is going at.
Kris is still hanging in there. He is having some issues as well with neuro stuff, nothing new, just ongoing annoying things.
Tim is struggling again. his stomach has begun to slow right down. He has a sore throat right now and is complaining of not feeling well. He has a low temp, but his cultures looked good, so now we need to do them again. Also his stomach is very tight. I have vented the G tube, but it doesnt help the tight (rock hard) stomach. He is not eating hardly at all and he has begun to really lose his hair again....it was sad on sunday when we went to the Make a wish harbor cruise in boston. He put on this white shirt and I looked at it closely and saw a ton of hair had fallen out on to it...
It was a nice cruise we were on. Went around the harbor and had about 300 people on it INCLUDING santa!! and all sorts of characters. Kids got to dance a bit, and drive the boat, meet new friends and also spend some time with fellow hospital friends. its nice to be around people who have similar issues, as you actually feel normal for a few minutes.
Lianna has really been having trouble with pain. She has increased her meds with the hopes it will kick in and work soon.
Reilly has begun his pain cycle again. up at night crying with legs hurting. We havent begun any meds for him for pain, but it may need to happen soon. Of course this means he will have more meds to be done during the day and I am going to need another storage solution!!!!! geepers.
I am still having issues that need to be resolved. Soon I hope! I am back to being unable to breath really well, coughing again, and I am pretty sure it is bronchitis starting back up. I am maxed out on the asthma medication and I tired of coughing during the slightest of moving around. I know what has been told before and I am fighting it with all I have!!!!! I refuse to give in to using bi pap during the day or night...I am stubborn. I am struggling as well with muscle cramping. The muscles in my legs are getting tight and almost a "twist" feeling happens....really hard to rest, sit or sleep like that.
With the stress going on in my little noggin, I havent slept all that well lately and that hasnt been all that good.
everyone is looking forward to florida in just 27 days.
Lianna is so excited to swim with the dolphins! she is giddy. Reilly just wants to be spiderman and has no desire to "sleep with the fishies" as he says, LOL...we have explained but he says he doesnt want to do anything with the fish he just wants to be "spidermans sidekick"...he has come out with some very intersting comments lately.
Tim will be driving with ROd a couple of days ahead of us because he is unable to fly. I get to tackle sending us off via plane with out Rods help....we have no way of getting to the airport yet..still working that out. We are awaiting to hear what the budget is for the wish trip. We know the driving is eating up a lot of it but still we are waiting. we will know in one week......we have made the decision that cell phones will be going OFF while we are there and we will call the hospital daily to update or if something happens we will call in, but otherwise we want to forget home exists for a few days.
well the rest of this week is hectic, Dr appointments for me, and then thursday an all day hospital marathon with kris, tim and reilly for IVIG. Should be fun.
Christmas is starting to look good. Our tree is finally up, and addition is open and being used in the living room. The rest will be done by the weeks end. My entire family will be here this weekend. I will be seeing my brother for the second time in 6 years....amen!
well, that is about all I can do for an update right now. I am really tired and in lots of pain. I will update more when I have info....if I dont update before christmas, MERRY CHRISTMAS!!!!

Friday, December 15, 2006 6:59 AM CST

sorry it has been so long since an update.
there has been so much going on in the house with the addition and so much medical things that I havent had the time.
Quickly I will update....and I promise a better one very soon!
I will need to seek out a second opinion on my testing possibly in NYC at a specialty hospital. It was recommended that I do that, but it has also been recommended strongly I not undergo any surgery as my lungs are doing very poorly.
Tim is recovering and his last cultures looked good. FINALLY!
He is pale and he looks a little weak still, but he is trying to be strong. He is desperately holding out for a christmas...we have no tree yet...generally have one thanksgiving weekend...o well
lianna is having pains still and needs to be seen about that. We are praying this wish trip will be what it needs to be for them all. because we are having to drive the van down because of Tim, it is taking a huge chunk of change out of the make a wish budget, and means less once we get down there, so pray it balances out....I cant stress any more over anything.
ok..I promise a much better update in a day or two!!! I really do!

Monday, December 4, 2006 9:37 PM CST

so much has happened and I have avoided sharing the details.
I just dont know exactly where to start and not ready to divuldge all of it as it still is too raw and too hard to explain.
I had a cardiology appt this week and they said that YES, I do have plenty of cardiology issues but that nothing at all is treatable. It seems my brain is not working correctly and is causing my autonomic system to go haywire. So no one can control the heart rate, or even the blood pressure. If my head feels my heart should be faster or slower, weaker or stronger, it is completely up to my head...I can t regulate it anymore correctly. Just hoping my brain doesnt need to take a break and everything just stop.
Also it seems being 40 brings on a whole new set of tests and Drs. Well, because of them, we have discovered something that needs to be investigated further. I am not doing well with any of this and trying to get beyond the nausea of it all.
Stress is very high and it seems for 2 weeks now it just has not let up much. and with this latest "blip" the stress has practically consumed my mind...trying to not let it though.
Tim is doing better, we have seen the Dr 2x this past week.
He is getting blood cultures to be sure things look good, now that his antibiotics have finished. His body temps are very low and he is struggling with fatigue. He has finally begun to eat some eggs. It may be the only thing he will eat right now, but at least it is food. He is using energy saving means to get through his days lately.
Lianna is having leg pains again but I think it is from the cold air....she is complaining more. she is so funny, she is trying to be such a big kid, helping me with things I struggle with, and yet she is struggling just as much. so we struggle together!!
we have made all our plans for the wish trip in january. She is hysterical about the things she has planned for the first half. She is getting so excited. We finally have the second half planned out as well. first half is sea world and universal studios with the all time "wicked cool" NASA happening in that time frame. She loves her planets and stars...wants a telescope for christmas even. so she is excited about going there. The second half of the trip is strictly disney. It is so hard to do it all, so we split it up in 2 halfs. this way we can focus on the places she likes the most. MAW people are so awesome and so is Wendy from MJ. Both groups of women have made this truly special. Making sure any allergies or issues have been addressed PRIOR to the trip so we have nothing to worry about once there. The one blip in our trip....Rod has to drive Tim down in our van. Since Tim has had issues with blood pressure and with clots, we need to be safe and the Drs do not want tim flying. MAW is helping with the cost of the drive, as long as gas remains stable we should be just fine.
Our addition is going well. We should be in it in approx 10 days....never thought I would hear that!!! we just need the walls to go up and then paint it!!!! after that we need floors down and trim up. Once we do that, we are done for the move in...THEN we will finish the rest of it later after christmas.
An absolute praise....Rod will be working pretty steady starting this week!!!! and it should continue now for a while..as in a year or more. AMEN!!! I will say if it hadnt been for one person, we would be homeless and hungry...you know who you are and I wont give out a name, I just hope you know how loved you are and how much we feel blessed to have you in our lives.
Another praise is the house is coming to a close sometime in the next month..and that in itself is a huge relief and blessing. We are hoping to begin PT for Tim as soon as we can begin using the therapy tub in the bathroom.
Praising God with the LOUDEST of yelling....that Tim is here with us to spend the holiday. It is a hard reminder to think of where we were just a month ago with small temps then ending up leading to near dying. He actually said "did I really almost die?" and "I just thought I was sleeping heavy and dreaming lots of stuff" Once we explained, he really seemed to understand and has gotten quiet.
please keep my CB and mito friends in prayer. So much is going on in so many lives. They certainly can use some prayers...
Till next time.

Sunday, November 26, 2006 9:22 PM CST

UPDATE: Tims line is playing some not so nice games right now. It is not flushing well at all and I am pretty sure I dislodged a clot. It went better after it dislodged but not sure where it went. He is pretty pale still, line pressure from reading the pump is relatively high, but not dangerous. we stayed low key today because he just hasnt looked right....hoping that this isnt the start of something new....


Saturday, November 25, 2006 9:11 PM CST

Thanksgiving was so beautiful thanks to a friend. She made an entire meal, with what has to have been the most beautiful turkey I have ever seen!, and all the fixings too. Stuffing that was absolutely to die for!! MMMMMMM
Thank you B.. I dont think we could ever thank you enough for that.
As for health around here, it has been up and down.
Tim went back to the Pedi Dr and his platelets are coming up, but in fact they are rising faster than they thought and he is now having trouble with blood clots....his line was plugged up today. I had to work at it for a while and at one point it popped and then flushed well, but we know it dislodged a clot...praying tonight we have no effects.
His blood pressure and pulse are weak and low. This is almost looking autonomic at this point. His temp was 95.4, and he looked horrible and pale.
SO we will watch him closely and we'll see how tonight goes, any funny business and he is right back to NEMC...FAST. The Pedi Dr showed us the paperwork from the hospital that he was transferred from. They had called me, but actually sent the papers to the pedi involved. They had his blood pressure down to 60/30 and his heart rate in the low 40's and weak. He was unresponsive to them at times, and when did respond, he would be confused or not reposnd for long before going back out. They felt given the Intravascular thrombosis blood work, and the platelet counts dropping so low and the bone marrow suppression, that he needed ICU STAT...and that was the full reason for transfer....Dr chapin did say that they listed him with a 20 percent chance of surviving this infection giving all the labs and vital signs...Once he was treated by the medical team that understood mito and line infections, given D10 and high carnitine-coQ10 he responded faster. Plus he responded to the antibiotics pretty quickly. PTL...people prayed!!!
The pedi did warn him about moving around too much and the fact he needs to conserve energy if he wants to go on Lianna's trip....he is trying to oblige. The problem is with food. He is now down to 107 pounds and not eating hardly at all. She told him to just enjoy what he can eat and not to worry too much, but it looks like we may end up back on partial TPN. and I am struggling with that. I do not want it at all and hope we can get back from MAW before anything is decided at all.
The other kids are doing ok for now. I am afraid if I speak too soon....the other shoe will drop!
My health was improving pretty well, but then I had someone create so much stress in my life in the course of 24 hours, that my health pretty much took a nose dive. My word retrieval is horrendous! and I have been unsteady. My blood sugars are flying high and been very nauseas. All from stress. I have a cardiology apt this week and I am not looking forward to it. most importantly I am still all worked up over this persons attitude. I actually had contemplated making this site password protected. But I wont. Simply cannot allow one person to think they know how I should grieve over my children or how I should have been chatty when in the throws of serious medical stress.
So in fact, I lose a friendship, but in a sense I gain so much more. I may lose someone who was called a friend, but I wont lose my health any further.
We have begun to decorate for christmas. We pulled out the little stuffed animals, and the houses and candles...Trinkets and stuff. Just enough to get the mood going. I got all the videos for christmas out, and Lianna grabbed all the books we own for christmas. We were told by the contractor we will have the addition ready for christmas. We wont have paint, flooring or a couple of doors (bathroom and med room) but we will have walls!! and it will be perfect! We will be able to go over there and use it! SO....we get to have a real christmas tree this year. YIPPEE...I managed to get a little 2.5 foot tree. We put out the animals around it and set out the books. It looks nothing like I would like it to look but the kids are excited and that makes me excited. This is the most wonderful time of the year for us. I love this time of year. I get SO excited. My dad made this so woderful for me...and I am trying like crazy to make this perfect for the kids as well. It is not about gifts and things...it is about traditions, meals around the table with friends, memories, shared precious moments.....and discussions about the reason why we celebrate the holiday in the first place. We celebrate chanakuh as well. We love to play the games, eat the food, and especially love to play dreidle...I always lose my coins, and Josh tends to walk out of there with a fist full....o well, but we love to do all the celebrations of holidays between thanksgiving and new years. We take the time to learn new traditions by learning other cultures. We learned a european tradition of santa clause. We learned if you put your shoe out by the door on a date in early december, then the elves come and bring a treat to your shoe...I forget the whole tradition but we did it a couple of years ago...and now we will do something different.
It is fun to just be a family at this time of year...lights...lights and more lights. We all love the glitter of lights.

O, this is a huge book tonight!!
Ok,
Onto Praises and prayer requests...
1. Praise for the thanksgiving meal and relaxing! Thanks B!!
2. Praising God for our church!
3. Praising God for the friends who have stood by us without judging us and loved us through the worse of times.
4. Praising God for Shawn. He was and is Tims best friend and has given him someone who he can trust. He loves you shawn!!
5. Rod has a job that is starting on Dec 4th that will be consistent!!!! we are praising God for that, and most importantly praising God for the person and their family who has seriously gotten us through every last day! J...without any recognition or grandeur, you have been a life line for us..accepted us all imperfections and all...we really love all of you!!
6. Praise!!!! the house is almost done! yes we have TONS of work to complete on our own, but it will be ready for us to actually do it!!!
7. Pray for my health to improve to baseline. Still struggling with coughing and breathing.
8. pray for tims line and clotting issues.
9. pray for the upcoming MAW trip that it will go without a hitch and health will stay stable.
10. pray that stress stays minimal....
11. please pray for all the mito kids and adults. To list them all would take forever, and leaving someone out would not be fair! but right now, Heidi my love is in need of support and prayers, so does Malisa, Kristie, Kristina, Bonnie and AnnMarie. Little Zach, sophie, Daniel, Sean, Jake and Jude. Please pray for them as they have had struggles, surgeries and in hospitals! Praying for Hope as well as she is struggling with the loss of natalie at this time and Heidi and Paul with the loss of princess heather. Please keep them in prayers.

You all have been amazing and wonderful!! Thank you for unconditional love and support!
God is so good.

Tuesday, November 21, 2006 9:32 PM CST

Just wanted to let everyone know that Tim is holding his own fairly well. He is very tired, but forcing himself to enjoy home.
Tonight was Reilly's birthday "party"...just us.
Reilly fell asleep and everyone was waiting anxiously for him to wake up...we waited and nothing..he slept! Because we dont know what tomorrow will bring, and we dont know if we will even have tomorrow, we never will again say "wait"...This is important. If something is important, time doesnt matter.
So finally after a completely draining, and horrendous experience this evening that I do not need to get into, because I think it would blow any of my friends away to hear it, Rod and I decided Reilly needed to be woken up...at 9:30pm!!!
We got him up, got all the kids together, sang happy birthday and gave him his little presents. I had made a homemade cake this afternoon as a way to decompress and just feel like a mom again. Lianna bought a tiny little 2 inch R2D2 toy and he thought it was awesome! We got him a transformer and a scooby doo cartoon. Tim got him presents from his bedroom..LITERALLY. Reilly said "O tim this is cool, now I got one just like you!" we just laughed and then ate some cake and they were off to bed. It may have been the wrong thing to wake a kid up and do this, but it was probably the most precious moments we could have had.

Today was a really nice day in many ways....I got up to the electrical inspector at my front door. What is it with people and 7 AM!..I need to sleep!! well anyway, I got up and found out the house is inspected finally for the electrical and now we are done with that. YAHH...
Then about 8 am, an entire crew shows up for the house work...finally!
I sat down with Reilly and we watched cartoons for a while. After a good long time, I went to my oldest and best friends. We had a small lunch and I got my birthday gifts from her. It was sweet and relaxing. Once I got home, I decided to just calmly cook this cake. It was so much fun to measure it out and make this cake for Reilly.
Lianna helped me and it was absolutely perfect. took very little time and then we sat and read books and simply relaxed. I even took a little nap. I really was relaxed and finally had a day where there were no worries (other than tims ongoing things) and no concerns about getting "it all" done.
everyone knows that a calm and beautiful day, never ends that way. and ours certainly didnt, at least for a time.
by the time our "blip" was over, I was having tremendous nausea, energy loss from stress, and coughing fits that I could not control causing me to choke a lot. So, it was a unanimous decision to celebrate a party so late. Yes we are all exhausted, but we needed to get back to positive.
on a side note
I spoke to GI tonight about Tim. Keep his attitude strong, and only let him eat what he would like to try. Do not try to force him or ask him to try to eat. He feels his stomach is just not working and by asking him to eat or forcing him to try, may create a real problem.
I do not need any more problems! so i wont be giving him any food. if he wants it, he can have it...no pressure.
lab work from the cutlures came back not completely clear but they had a "few spores"(??) and that is actually good. It shows it is improving a lot. We go back friday for repeats and then wait.
I want to thank all of you ONCE AGAIN, for the emails, and calls, private messages and gifts. I am not going to name any one by name as it is unfair as I would omit some, from memory lapse! but once again, for the people who stayed on the phone with me for hours on end Thursday night and into the wee hours of friday morning...and the ones who forwarded emails each update! so many prayed and it was definitely felt.
I honestly felt the comfort in the middle of the trials.
After this evening I need a lot more rest. I never realized just how stress does affect my health negatively.
Neuro issues are present right now because of this stress...and I know tomorrow will be a full day of rest.
as a matter of fact very few if any private emails will go out and possibly no phone calls either.
Sorry once again for the book...
just letting you in on our home now.
I will update if there are any changes or concerns...

Monday, November 20, 2006 8:20 PM CST

Well reluctantly the Dr allowed Tim to come home tonight. It is getting increasingly difficult for me to get up to Boston to be with him, and with no paychecks for the past 6 weeks the cost of gas and parking had eaten anything we had in our sack of never ending change. I think the fact that they truly know we can handle just about any medical thing at home, they reluctantly allowed it. What it really came down to was the fact his last culture hadn't come back yet. Wont be done till 9 am tomorrow. BUT, it has been a full day and nothing has grown, so we felt sure this med was working. Now Tim has picked up some virus that is affecting his little tummy and bottom so, we really needed to get him home to a place where he wont be exposed to everything under the sun!
So late today we packed him up, and drive home. He slept all the way home as he was really wiped out from just going to the car!! but he was so happy to be on his way. Even when he woke up, he was happy to be in the car.
We got home around 5:15. He ate a little, got all his meds...hooked up his fluids, got his g tube feeds going and then got his antibiotics done....it is 8:30 and I am exhausted from rushing to get all his meds done in the course of 45 minutes. O ya, we also had to get food ready for everyone else too! and get baths and bed...I am so glad everyone is all in bed and sleeping. I think we all have kind of flopped down because it has been so stressful and now we can relax a tiny bit.
On a side note. As we were in NEMC today, I decided I had to see my pulmonary Dr again. I keep coughing a lot and cant talk much or walk much before I go into fits. Dry cough, almost tight. Well he could hear me coughing and checked my O2 sat. He sat down for a second and said "well Donna my hope is this is irritation in the throat and chest still. my fear is this is muscle weakness that is causing this. we need to increase your meds again and hope this is irritation, but if it doesn't respond quickly, then we need to test some things right away." The more tired I get the worse I feel...I am really struggling with weakness in my muscles. It doesn't force me to stop when I am having to do something, but if it isn't needed I stop! I am wearing down fast.
So back to Tim...
we find out tomorrow the last look of the culture. we stay on the IV antibiotics for 11 more days, and then we follow that will another culture to be sure we have killed this.
When I spoke with the resident before we left, she said...often they get the cultures clean for 48 hours then they let the kids go home ONLY if they can get nursing. But in our case, they said we had it under control with taking care of him...plus we have 129 nursing hours (we don't even have one nurse at all, but a lot of hours for when we ever do!) and some PCA hours. So at least I am not leaving him alone to get stuff done. we actually have Drs appts this week still. so I cant leave him alone...I will work on making sure he is covered.
some day, I will get sleep....not sure when...but some day. I am exhausted.
Thank you all for the prayers to get us to this point....
And I want to thank "B" for taking care of us for thanksgiving. You have completely humbled us with your total generosity! Thank you!!!!

Tomorrow is Reilly's 5th Birthday...YIKES...he isnt a baby any more........I suddenly feel VERY old!

Sunday, November 19, 2006 8:39 PM CST

HAPPY BIRTHDAY TIM!! Love YOU!!


I just wanted to tell you it has been 18 hours and the cultures done on Tim's line, haven't grown out anything yet. This is great news. The final diagnosis for the identification is klebsiella Pneumonea.
His blood pressure is still really wacky and low, and he is pale as can be. BUT he had a birthday party in his room and was very very happy to see people and was able to sit up and have fun with it. He has been able to leave his room and go down the hall to a friends room. He has been talking with him, playing card games, and even played some Xbox 360 games...Tim's dream come true!
I talked to him alone for a second before I left the hospital tonight. I asked him if he was ok and if he had a nice day. He said it was awesome and he was so happy he got to have a birthday. He also said for a couple of days he really doesn't remember a lot (wonder why??!) but he remembers thinking about the fact he and dad were going to get the worlds largest Christmas tree and decorate it perfect, because that has been his biggest dream and dads. So maybe this little guy has found some recent reasons to keep fighting. I also know being inpatient at NEMC vs. the other big hospital, has been important to him. He really loves the staff and I think it is a big reason we saw such a huge change in his spirit this time. He felt safe and comfortable, plus in a sad way, he felt at home. So I am very glad I chose to go there when the choices were put out. Local is nice for some thing's, (evidently not much for Tim!) but NEMC is home...
We have so many nursing hours and PCA hours for Tim, at this point the second they say he seems to really be improving, we will scoop him up out of there and bring him home where we can be a family again. His platelets are still on the rise....YIPPEE. They are now at 110. So much sweeter! He still has some peticheae, and it makes us wonder if he has the number going up and the size of them may still be weak...Kris does this to us..can have 50 and they work like a charm as they are big, then he can have 300 and looks impressive in number but be bleeding like crazy! because they are so tiny and immature. I spoke with the Main Dr and we decided that 4-6 weeks would be our waiting period. I guess the reoccurrence rate is higher in this time frame, but after that chances are it is a new infection and not the same bug that has hung around waiting. The simple fact is he had this infection while in Indiana and that was 15 mos ago!! We also now know what the right medical care can do for him with this infection! 6 days and he looks so beautiful (I say that because I saw him 5 days ago and it was NOT good and now I could care less how many hairs are out of place!!) In Indiana, it took 3 weeks for the infection to clear, and 3 more weeks to help the pain from it enough to get him home...PRAISE GOD for this wonderful hospital and team of Drs. They are amazing.
It has been hard to go through this. We almost lost him. This was another one of those close calls. I don't like these at all anymore. But I will tell you, You definitely think in a flash how many things you need to say, and do.. and all the things you messed up, and missed too. Trust me, I had all those feelings and more!!!
I don't care if we don't have turkey or any other meat for thanksgiving. I am just going to be grateful that we are in ONE place (we hope)...and complete!!!
Thank you all...so much. I cannot even begin to thank you all for prayers, for calls, for notes in the Caringbridge page, and emails. Midnight phone calls to just let me vent, and also to pray over the phone to let me feel connected with you so I didn't feel alone.
Liz.....you kept me going Wednesday and Thursday! PJ, you too...being able to talk and get out fears and also to be able to express the fact that we knew it was bleak, but that in a way I knew it just couldn't end this way. C, my "oldest" friend...I am so glad you are still here with me....and every one else...each one did something to make this past week go by easier, and made us feel cared for. Darla thank you for getting this to Mitogroups!...THANK YOU everyone..
Well I am going to end this long note and update tomorrow if we are still on our positive countdown to the magic number...we need up to 48 hours of clean cultures...
this is really going to be a nice week!
Once again, heartfelt thanks!!!!!

Saturday, November 18, 2006 4:16 PM CST

Before I forget, Sunday is Tim's Birthday!!!!!!!!! old man at 15!

yippee, whoooooooo, yaaaaahhhhh,
ok, all that to say, that Tim's bacterium has been identified and that they now know the EXACT medication to use on him. No more of the "lets dump every known medication into his body" theory!! He has Klebsiella
(to learn more about this go to http://www.personalmd.com/news/klebsiella_102299.shtml)
His platelets are moving up now, last I heard they were in the 70's...much better number! not great but so much better than the past 3 days.
He looks pale, has lost more weight (now 108) and shaky. He is cold to the touch, but doesn't seem to be cold and need blankets. He was happy to get out of bed and actually walk down the hall and even go to the playroom. Although on the way back, they noticed the shaking he has begun to have. He is wobbly and he just appears weak. He has begun to lose his hair a little bit too. not bad, but it is from lack of nutrition. He is refusing to eat. Claims he just isn't hungry at all. He really looks whipped. He has black circles under his eyes and he is so thin. Bones with some skin on them....and so pale...
I am actually sitting here and almost laughing at the pettiness of the these "problems" and thinking to myself, I am SO GLAD that we have these problems right now...because in all reality, we could have not had to deal with this at all and been making alternate plans....BUT, now I can be a nagging mother again and try to coax him to eat and try to get some nutrition. He met a boy in the hospital who he is talking to. This boy has a line, also has an infection, and has hemophilia. They have played a couple of games together on a game system and in the playroom. They are talking about lines and how they cant do certain things, but how lucky they are that nowadays its lines that can keep them alive. So it has been good for him to talk to another boy. Especially one who is his age and struggling..
the other really awesome thing is, the Dr on call this weekend for the hospital floor is a guy who seems to know that we can handle anything at home. So he said if Tim keeps making progress he would like to see him come home for the holiday. He knows, as do the nurses, that it will be better for Tim to be with us all, than to be there. EVEN if he doesn't eat, he will be in his house...plus we will begin decorating for Christmas!! thanksgiving night tradition here.
So, From wed to Saturday things have changed so much. I do not for one second think it was simply good medical care, because Dr Korson even said it would take and act of God to turn this around fast and safe, and have him home for the holidays....so I guess, we had an act of God....
I'll take it!
Please keep praying we see progress daily and we have no setbacks....we know they can happen, but I don't want to believe they will. The nurses are letting us have a room tomorrow to hold a birthday party. We invited people from our church, a friend, my in-laws, and staff from the hospital...my brothers were invited but I have 2 brothers with flu symptoms, not good!! so them and families are a no no.., so pray for this party!! this is to help with the emotional part of the healing process... . We hope that a few people will come.
Ok enough of my update book.
I will post later if things continue to change...

Wednesday, November 15, 2006 7:25 PM CST

SATURDAY NOON UPDATE
Tim is actually playing quietly in the playroom today! He is pretty shaky but his platelets are finally on the rise...not great yet, but improving a tiny bit to at least show us they have a chance here!! The bacterium is not figured out yet, but at least we see improvements without answers.
Prayers are the thing that has gotten us this far I am positive...
We are going to push to treat him at home by thursday afternoon so he can be out of here. If we can, it would be great to have him back with us....it is a far stretch, but one can wish right? I thought it would never be this way, but look at us now...so why not wish for thursday!!!!
I will update tonight.




FRIDAY NIGHT UPDATE
Ok, It is 8:50 Friday night and the difference 24 hours can make is amazing.
I just want to start by saying to all the people who prayed for us, had
chats with God, or even made deals with God on our behalf...Thank you. How
ever you chose to deal with the update last night, THANK YOU.
Tim had a seriously bad night last night. By 6 am he was doing better and
actually woke Rod up looking for breakfast.....he was hungry. huh???? ok!...
He hasn't had any increase in platelets, his bone marrow remains suppressed
and he remains at risk for infections. BUT, he was alert most of the day
between naps and rest....He is not allowed to walk at the moment because he
is shaky and weak. so due to the low platelets, they said no getting out of
bed with out an adult and wheelchair only. He obliged! actually he didn't
move at all most of the day. He only got up once to sit in the wheelchair
for 45 minutes, then he was worn out and back into the bed.
He was transferred to the medical floor, from the ICU at 6 pm tonight. This
was the magic hour...if he did well up to that time, he stood a very good
chance of coming out of this infection....without too many lingering issues.
now, right at the moment the remaining issues are, we need to identify the
bacterium. When they do that, we find the correct drug to use. right now he
is on 3 different meds. They need to know where it colonized to be sure they
can kill it completely. the hope is it is in the entire blood stream. not
just his line...
if it is only in his line, he will need it removed, wait for clean cultures,
then go back into surgery and have a new one placed...not a great idea, but
we understand. If this is not in his line but moved out into the
blood...well then we are able to save the line. I am just the messenger..I
honestly do not understand this. He definitely was/is septic. and we realize
it will take months for him to fully re-gain back his strength. plus he has
some bruises on his joints, and swelling a bit too so we wonder about joint
bleeds now. they are not bad at all, but they are there.
The playroom at the hospital is staffed by the sweetest most amazing people.
they have been through ALL of Tim's problems in the past with us and they
simply adore him.....Today was the last day it was open before the weekend,
and they knew tims birthday is Sunday. so they got a bunch of things and
wrapped them up, came up to ICU and sang Happy Birthday to him and actually
gave him a bunch of gifts. He got a autographed cam Neely hockey jersey, and
cards, puck, stick, and a bionicle. He was so excited. He even got this
funky hat that is from the bruins, it is a knit cap with gold and black fake
furry hair all over it. It is hysterical and he loved it all. he finally
smiled for the first time.

So for now we seem to be in a state of limbo. He is really a sick boy still
with D I C, and sepsis. He keeps dropping his blood pressure and has no
energy. BUT HE HAS stabilized with all this going on.
SO thank you so much for doing what you all did....
I appreciate this sooooooo much!
As soon as we know more info I will update. Things change so fast, so heaven
knows when I hit send, something will have changed again!
I am exhausted. it has been ONE LONG DAY.















FRIDAY 3:40 PM UPDATE
Well we may be getting out of ICU in the next few hours. He is "stable" with platelets below 40, and bone marrow suppression. He can leave under the watchful eyes of the floor above the ICU. Sort of a step up I guess!
It will be a long long admission. We are waiting for the next cultures to come in to identify the exact baterium. I scoffed a PC for 5 minutes. my time is up and I will update tonight. so we wait with praying hands and heart that he can go to the general medical floor and be safe....that is what we are hoping for.
meanwhile no walking at all. his counts are too low and he is very shaky and looks horrible when trying to sit for long....praying that antibiotics kick in soon and this becomes a memory! Praise God for the fact we will have a chance for this memory to end positive.....




friday morning update
Sorry, I actually fell asleep.
Tim had no idea he was transfered from one hosp. to another. He slept through it all.
His platelets continue to fall and he has more peticheae now.
well after 3 hours of sleep I am awake and going to head into the hospital to be with them both. The Drs would like to speak to us both about what options we have at this point...or dont have.
He is in serious condition with this still, yet he did ok over night with no seizures and no dangerous issues. although so much is going on, he has not changed since 2 am.
I will update or have someone post in the guestbook what is happening. So look either here, or in the guestbook for an update.






THURSDAY NIGHT/FRIDAY VERY WEE HOURS UPDATE

It is 12 am, Tim was at a local hospital that is staffed by boston Childrens hospital Drs and was found to have a gram negative line infection. Was doing ok for a short time and then suddenly took a serious turn for the worse. He is right now being transferred to NEMC ICU as I write. He is having bone marrow "failure" issues with this infection, and has become septic very fast. He also has now developed InterVascular Thrombosis. This is with a platelet count of only 45. He is in very serious shape. Our metabolic Dr said the next 24 hours are critical....I am struggling right now with all of this as I am home and have been told to rest, and keep the phone handy, yet I am a wreck. The stuff we were told is if the bone marrow fails it is bad, if he develops a clot in his brain it will be bad, he does have visible clots evidently. He has peticheae at the moment and is bruising. He has been unresponsive at times, and other times he is asking for a taco. If I have not said this enough yet, I will say it loudly now...I SO HATE THIS DISEASE!...I JUST HATE IT.












THURSDAY MORNING UPDATE...
I spoke toooooooooo soon.....Tim woke me up this morning with a 105.9 temp and tremoring. He has a headache to kill all headaches, and he had to be vented to allow the pressure in his stomach to go down. He is still home, while we wait to speak to the Dr when they open. Meanwhile please pray.....this really is something going on!!!!!


WEDNESDAY
ok, we seem to have dodged the BAD bullet....we had so many people who prayed for Tim and one very super special friend who actually called and prayed over the situation immediately. Tim has had a fever for a few days, off and on, but nothing more than that. We have come to the unfortunate conclusion that this is from the fact his stomach is not working at all. He is not absorbing things anymore. I hook up the g tube and wouldnt you know, whatever he had to eat or for meds 6 hours earlier, is coming back out the tube. So frustrating.....
The metabolic Neurologist Dr wants us to have a complete fasting acylcarnitine profile done again as there seems to be a large issue with this as well...I guess this issue is in addition to the non existing coQ10 levels, and also complexes 1 and 3....O lets not forget the long chain fatty acid oxydation disorder....ugh!
life is certainly never boring here.
I went to the Dr on Monday AGAIN!, and I found out the pneumonia is clearing up, but my asthma is what is giving me the biggest troubles now. I am on prednisone, pulmicort, and ventolin. These will stay on board until the illness is gone....then I got the biggest hit....my lungs are weak and my diaphram is weak as well. I am not even eligible for CPAP...so I was thankful for that...until the wonderful lovely Dr said , "..no I dont think CPAP will at all help you. You actually need BiPap..." UGH...o great. So I said, ok, I suppose I could do that at night, and he informed me, it would be of great help during sickness and also when I am too tired to move....so I asked him if he meant more than nights and he said "o yes".....uhmmmm..I say....O NO!...
He said we will discuss this after my illnes is done. He also is taking control of my GI problems..because it was the GI dysmotility and severe reflux that caused this pneumonia. So, I have a 2 for 1 Dr. He is a pulmonary Dr but he works in the critical care medicine dept. so he knows a little bit!
The others are holding their own so far....
The house is slow...but coming along. We are really praying this holiday season we could be in, looks not so promising...but we can pray and hope.
We have 3 birthdays coming up this next week...Tim will be 15 on the 19th, Reilly will be 5 on the 21st, and I will be having a birthday on the 28th....who cares how old I will be! needless to say it will be a milestone one....
I am just deliriously happy that we are close to our birthdays and we have the chance to celebrate one more year.When we get to christmas we sit back and it becomes our milestone. We are together for one more celebration. So many times over the past 7 years we felt like we would not make it. the past 4 have been the hardest. How many more of these holidays will we have together? The decline in 2 years has been so severe in some of us. When people judge us (and I mean judge) for how we do things, it hurts. We dont need much, just each other and that is something we have this year again....Ok, before I get any more emotional I will shut up. I cant go here right now....I am not feeling well and when this happens, I tend to get teary...ok, on to the good things..
I have a very awesome PCA, who is my friend. She helps me so much. I just adore her...without her I could not be a good mom. so thank you cathy, I love you deeply!
We have a TON of appts through the next couple of weeks. A lot of them involve me seeing specialists. Heart, kidney, pulmonary,neurology and Endocrine. And the kids seeing neuro, metabolic, and primary Drs plus IVIG...and a dentist thrown in too!! LOL Tim is getting braces...poor baby.

So prayer requests we do have...
-house needs to get finished. Right now we are waiting on inspections so we can finish the inside. Pray the inspectors will jump right on this and come on over to do this...we really want to be in for christmas.
-Praise God Rod has a little more work starting Dec. 4th ...it still will take a month before we get the check, but at least it will mean we will be able get ourselves back on track and maybe give back to the ones who have helped us.
-my health improves so I am able to take care of myself more. struggling with energy still and coughing a lot.
-Tims stomach to work again.
-no metabolic crashes or illnesses during the holidays.
I guess that is enough for now...this turned out to be a book..sorry!

Saturday, November 11, 2006 8:38 PM CST

I just need to quickly update,
Even though I do not feel well at all and I am still really coughing bad, I needed to jump online and let everyone know that Tim is showing signs of a line infection with a high fever and chills. Please pray for him and I will update as soon as I know more.

Thursday, November 2, 2006 1:16 PM CST

FRIDAY UPDATE:
I just wanted to update that the Pulmonary Dr called and my pneumonia is not a bacteria you catch...I have aspiration pneumonia and it was a BAD case from what he said. He is doing further investigating and will get back to me on some things. Meanwhile I have been told not to eat any solid foods....now that I am starting to look at food they say this....yesterday I would have cared less. So I am on liquids or gels. The Dr did use the terms that "my swallowing mechanism is weak, and your lung function is impaired as well and combined this is dangerous"....I never thought it would go this way........but I did want to update.



THURSDAY
I had waited to write this until I was positive. I have been in and out of NEMC in boston this week...I have been sicker than I have ever been. I have very high temp (upwards 103) and lots of coughing fits and chills, hit by a bus feeling, and I am on antibiotics. The Dr called me today with all my results. I have a very bad case of pneumonia. Both lungs are filled. I am not keeping my temp down nothing I do is working. so I was told I may have to go in for IV antibiotics to get a hold of this nasty bacteria....they are waiting for a biopsy they took. I had them go down my throat and they made me cough while they took something from deep down....they think there may be something else cooking as well.
I have weak lung function from the mito and this is the first pneumonia I have gotten. usually this time of year is bronchitis....so we wait.
Tim is now down to 109 pounds. Nothing we do is helping and we actually have seen his stomach shut down. I put the gtube extension on and he had meds and feed come back through HOURS later....so he is not absorbing meds right again....or feeds. I refuse to allow him back on TPN and praying we can get this to turn around.
Lianna is doing better, her boo boo is still healing...looks a much nicer color of purple now.
well back to bed. I am not awake much these days....

Sunday, October 29, 2006 2:45 PM CST

Been a little frustrating here this week.
Lianna began feeling much better by monday and was ready to play, She went to our nurses house to play with her daughter and got her finger slammed in the door...so....we now have a splint on her very broken finger tip! for 10 days if not longer.
we have to watch her diet very closely to be sure her sugars stay HIGH as she keeps going low on us and throws off ketones. insane...
Tim is just not well. He is now down to 111 pounds and we have increased G tube feeds. He looks horrible in his eyes and face. He doesnt have that gleam and he sleeps a lot of the day. He is off at a friends house today, the only friend he gone to see since 2 years ago and surgery. This is exciting but I worry how much of a fall back we will have from this.
Kris brought me to tears this week when he tried to do something and then realized that in now way could he do it..something that a typical 17 yr old should be able to do.
Once again, I have come down with something, but because I began getting sick, I ended up having 3 days with what my PCP is calling seizure activity...although the Neuro/metabolic Dr said she is certain they are mini TIA's or stroke like episodes. When I sit back and think about a year ago, I know what I was doing back then to some degree, lots I have forgotten. I have had total loss of memory on many things. If I look through photos or get reminded of it by lots of people it will jog my memory, but too much has been lost. My right side is weaker again and I am having fireworks and pain in my head almost every day this week. I have driven a few times to boston and had to pull over simply because I was losing focus and zoning out.....
I have fought the use of the darn wheelchair for months now. I finally got out of the darn thing early summer and now I see the repricussions....I had family (family..not friends...there is a HUGE difference) tell me how "you dont need that 'thing' because you can walk if you want to....it embarrasses us to see you in it"...I could go on (there is just so much more)...trust me it is very embarrassing to me as well. more so as it feels I have given up. In fact it was shown to me yet again when I conserve my energy I am better. All I did this week was laundry and clean the house, go to boston and do some office visits....that was enough to get me sick and cause this new chain of events....I look at people and dont even know who they are, and honestly cant remember what I have said or done minutes earlier....I keep notes and make the kids remind me of things. people who are around me a lot see this. balance is affected again and honestly I just dont feel well....so the neuro Dr said, "use that chair! it is yours for a reason and you need it...not just anyone gets a wheelchair...."....great! now I am not just anybody....I am still fighting, but truthfully, I dont feel well and I am tired of this. So as I get the enrgy to fight for my needs, I am having to get tim to fight for his...This is exhausting......
so that is my vent for the week....arent you all just glad you checked in??!!
please keep praying for our church, it is growing and God is really there...AMEN
pray for Darla and her girls as they come out to mass for the Dr...
pray for Heidi and AnnMarie with their medical needs...
Pray for malisa and that she will come home and be strong again.
Pray for all the little kids, Sophie and Tyler, Sean and his brothers, and the rest...
pray for Heidi and for Hope that they make it through this very difficult holiday season with out their little girls....This is probably the hardest thing humanly possible for any parent!
Keep praying for us...Rods job situation is not going all that well right now and we could use some security with that, and for the house as we embark on the last month (or so)....
asking for these requests make me feel better....
we have many visits into boston this week and some diagnostic ones as well....
till next time

Saturday, October 21, 2006 9:58 PM CDT

sorry it has been a long time. Lianna is not back to full speed yet but she looks a lot better than last week. She came home and got sicker really fast, when I took her bck it was found she actually had pnuemonia as well....along with 105 temps.
we had to follow up this week, and we got word she had rhabdomyolisis and myoglobinuria, along with ketoacidosis. I also found out her amino acids were WAY off. The scary part was she got so sick so fast and it is taking such a long time to get better. we have a plan now in keeping her ketones down. She basically needs to keep her body in HIGH sugar. So daily we watch for ketones and then flood her with sugary things to get rid of them, or we face nausea. She has finally today begun eating solid foods. up till now it was soup broth and drinks.
Tim is still having real quiet moments. he is watching kids get sick around him and I can see the fear. He is definitely scared and also has no "reason" for fighting to live...He lost skills and he lost energy so therefore he feels like he has lost it all..on the good side, he is excited about this make a wish trip and will get some much needed time with other sick kids and see that it is OK to live in the midst of fear and setbacks.He also is much calmer and it looks like the seizures although are still there are not as often this past week...AMEN.
There is a lot more going on, but it is late and I have to go to bed as I am having little fireworks of my own going off in my head...and I have had some of the moments that look like seizure activity too....Not too bad, but defintely frightening and even annoyingly painful. so I need a lot of rest to try and break this...
Pray for all my friends with MITO and the ones who do not have it, but are still hurting...

Thursday , October 12, 2007 7:36 CDT

UPDATE AGAIN 10:30 pm
Lianna is being admitted as we speak. She is really very sick! and they cant figure out what is going on....

UPDATE 7:36 pm
I swear this is never going to end. Lianna is on her way to the NEMC ER and is in a state of ketosis that is really on the severe side. Her level was 40 yesterday at the pedi office and she was pretty sick, but tonight she took a HUGE turn for the worse and she is now showing the level to be over 160. She smells ketonic and Metabolics wanted her in ASAP to be seen. Her temp is 103 and her normal baseline is 96...so she is HIGH. and she cant keep anything in even on Zofran. Her stomach and head are in pain. this is way too early in the season for Lianna to be sick...Tim cannot get this...so please pray for him not to get this. (although he is using gloves, a mask and he is spraying lysol on everything! think he is panicked?)








Monday, October 9, 2006 7:18 AM CDT

VERY long start to the month of October!
Looking forward to november!!!!
Tim is doing much better since the surgery is done. He has some lingering neurological issues from it but that is something we can live with for now. No infection yet, so we may have skipped that horrible scene.
Tim is becoming so very fragile in many ways. His weight is going down again, when we try the g tube feeds we are golden for a few days, then suddenly we have a night of throwing up and it is undigested formula and food. So ya he looks like he is gaining on paper until that day, then he loses again...so it is nothing. once things settle down a bit, maybe he will begin digesting foods again.
On to a few good things.
I had been praying for a revival with in our church. I have sat back and just waited to see what would happen. I was tired of fighting a losing battle to get people together or to even get a request known....well, it has certainly begun changing. AMEN. Now I know I was praying for this...but it changing so quickly with in some leadership, that I am almost concerned!! LOL So I am going to keep praying the people follow the leader and continue this. So to the friends I asked to pray with me for this...THANKS!
Rods new job began on friday, as a contractor. Right now we will not be getting any paycheck until the last friday in november..and from that point on monthly!!..it will be really tight for a short time and I am just going to trust our needs will be met and that we will not be worried. After a couple of months I am sure it will settle in fine.
Now on to the big news...
We have been in conversation with the Drs regarding tim, and the fact he has pretty much given in to the disease and is tired of fighting to be healthy. With great thought, we have decided to go ahead and use Lianna's Make a wish. We would much rather have waited on this for a little while, and until Rod got a few pay checks behind him. A major playing Dr, stated that would not be a good choice...so we are going to do this after christmas. Liannas wish was to go and swim with the dolphins. SO, it has been arranged for us to spend one week at GKTW in florida, and then spend one week at Disney world. One of the Drs has agreed to come and stay with us, for tims sake!! and we will have a PCA/Nurse..with us as well. We will be taking a lot of the time to give Tim a break, and giving him a chance to see the kids at GKTW and see that they are fighting. Hopefully the Dolphins wil be therapeutic as well. we were told they are almost the best medicine. Lianna will be the wish child but in a lot of ways this trip is to try and jumpstart tim into fighting. If this doesnt work, we will just have to let things go. No one can force tim into getting better and no medicine will help unless you allow it to.
SO..pray for our wish grantors who know the plans regarding Liannas wish and Tims needs.
Pray for Rods job and the finances.
pray for the construction as it has slowed down with the GC being sick.
pray for our family, to stick together through the stressors of Tim. He is making us crazy!
Pray for all our CB friends. There are a lot of kids and adults who are going through so much and just need the prayers to get through.
keep praying for our church that it will find its way back to being a great big family and care so much about each other no one wants to be away from each other. It lost that, and praying it finds it again.
most of all, thank you all for being our family...you have kept us going during some horrific times and we really thank you all.

Wednesday, October 4, 2006 3:00 PM CDT

Sorry it has been a LONG time.
Too much is going on to really explain it all in detail. BUT
Tim is going into Mass General Hospital on Friday morning for an emergency placement of a central line...long story but he has had antibiotics and now has to get the line replaced as it was cut in half. NO he does NOT have aninfection yet, but this could lead to an infection as it was open to the air for a bit...I will explain later.
He has been having a tough time today with stress and seizure activity. Valium is our friend today and even yesterday.
We have no idea how long he will be in for, as it truly depends if Tim will fight to get strong or if he will not fight and have terrible issues after anesthesia. With Mito one never knows.
Also, our week last week began with our general contractor literally having a massive heart attack in our yard. I called for an ambulance and they med flighted him to Boston Medical Center. Thank GOD he is alive now. The Ambulance people and scott both said only a few minutes more and it would not have been the same story...so praise God I was home...
k
I have no more time to write...
please pray for tim and pray our energy/strength can stay up....this is wearing us down a lot and mom here, is having a near emotional breakdown. I actually had one the other night as he was on his way into mass general, I have only slightly recovered....ask any one who got a call from me...hysteria is an understatement! but I did keep my professional cool while Tim was here....(kinda)

Friday, September 22, 2006 2:14 PM CDT

Well, the problem I had was a small seizure that is directly related to having an infection. GREAT..one more thing!
So the concensus is, try to watch for infections....no duh! I hope the next time this happens I will get back on my feet faster. It took me the entire day to feel normal again, and wednesday was not so fun either as I had little firecrackers going off in my head...it was not pleasant.

Kids are fighting infections still, but getting better.
Rod is fighting sickness as well. hoping he gets much better soon...
house has hit a major snafu and the situation is getting worse by the moment....
this really stinks...we have a shell and cant use and maybe not be able to for a very long time....as in months not weeks....
it really has been a horrible week....but God showed us He is still here...ROds job situation is looking better....
keep praying..we really need it!

Tuesday, September 19, 2006 3:55 PM EDT

Tuesday update...
I am not sure what happened, but at my appt at NEMC something neuro happened. my right side is not working right. I could not function for almost 3 hours. The Dr freaked out, it was real sudden. I was fine, then it happened and I slumped over a bit and could not focus....I was almost admitted. Thank goodness Rod went in with me for the ride...I needed him to get me home. we had to wait 3 hours though before we left.
I still am having numbness, some confusion with focusing and responding. my right side is numb and I dragging my foot a bit.
was this a stroke? All I know is the reply was "take a baby aspirin NOW, and lay down. And this is definitely mitochondria related". My PCP thinks it was either a seizure or stroke episode. either way, I am having residual effects. I need to return to the ER at NEMC if this doesnt improve at all soon, or if it suddenly gets worse. Please pray. I do not want to go in there. It keeps coming and going, hoping it conntinues to go.


SUNDAY SEPTEMBER 17, 2006
I had a very long thing written for tonights update, but I am too upset to send it along, so I will just briefly update and save the other one for another time.

Tim is struggling. Fever and refusing to eat...eating only minimal things...has strep, and is bleeding alot. also he has begun to increase his seizures again...

kris is not doing well. He tested positive for H Pylori and strep and he is in a ton of pain. His sed rate was in the high 30's even though he is on HUGE amounts of celebrex.

Josh is doing better with pain, but remains on pain meds. He also has strep

Lianna is in a lot of pain too. legs and head. we had to increase her baclofen. she has strep as well. her asthma seems to be bugging her.

Reilly has strep and is coughing a bit. been napping during the day...very unusual. still active though.

I am seeing the Dr this tuesday for my apt. We have a ton to discuss...I know stuff is going on, just hate admitting it.

We are still in need for some house stuff to be done. we need to set up the swing set again...hard work but need to do it so the kids can play. We need time and healthy people to actually put it together...takes 2-3 and right now we dont have ONE...so pray for that tiny request.

blessings this week are
God has given us so much to be thankful for in the past year.
God has given us an "angel" and that "angel" has helped take some fear away from us.
we are still all home in one piece.
Rod may have the chance to work from home soon.

I will write more tuesday...after I speak to a few Drs.
Have a blessed week!!

Tuesday, September 12, 2006 9:29 PM CDT

FRIDAY UPDATE:
You wont believe this!! I have 6 people with strep throat!! reilly and tim are not all that bad, but look like they are coming down with it and they are treating it because of hints they see upon looking at them.
SO....6 people on keflex...this is really not funny and I am seriously losing my humor in this!! LIFE....UGH
O ya, I am NOT one of the 6...for now!





I know many people are waiting for the next update and I am trying to keep it positive...it is not easy.
I will start with the top!!
Josh is having tremendous stomach pains and it was called mesenteric adenitis...basically for some reason he has swollen lymph nodes in the right side of his abdomen. He is in a LOT of pain. We need to watch this to see if it aggrivates his appendix.
Kris has a hernia...great! He has pain as well..He refuses to give up working on the house a bit as he is having some fun. But he hurts a lot.
Tim is back to having his seizures and he is changing them each time he has them. He is now jerking a bit. He zones out and he paces. His stomach is coming and going with working well. He is back on G tube feeds in order to help with his fast weight loss.The GI Dr said that he feels Tim has given up. He said he feels that Tim no longer cares to fight this battle any more...I dont know what to think anymore. some days he acts ok, but is upset about the fact he cant do the things he did 3 years ago...it is sad. I know the loss of his best friend is hard. He is glad he can call him every week, but he hates the fact his game buddy and the person he trusted the most, is gone.
Lianna is struggling with issues as well and we have to go through major testing to see if this is in fact progression for her. She is following in Kris' footsteps.
Reilly is much better since we had his little blip with the tubes issues.
I am still having prestroke issues and struggling with word retrieval. I am better but still struggling. Balance is an issue still. So are many other little things.
As a family, we are struggling to make the right choices medically. In the past few weeks, I have cancelled a ton of apts, and kept the ones that are critical to life, well for the kids, I have cancelled all but one apt for me. medical costs are horrible. deciding what needs to be done vs. what should be done is really hard...
Right now, too many health issues are at hand but we are trying to remain positive that we can overcome this latest crash....
Blessings for the week are
we have a new pastor at our church...I told veryone I was praying for revival there, praying this is my answer!
Rod is feeling better finally.
school work is being done and so far so good!
I have gotten my friend cathy to come back and work for us! YIPPEE... and I am pretty sure I have someone who will be handling the med room in the house too...
so yes, things are moving ahead...trying to look at the positives and leave behind the fear of drowning emotionally, financially and physically....
Keep in your prayers my mito friends who are sick or just not doing well. pray for our new pastor that he can work in the hearts of people in our church...pray for the youth group and that Tim will find a reason to fight for his life....
I guess that is about all for this book...
please let us know if you visit, we like to read the guestbook. it helps break up the days!

Wednesday, September 6 , 2006 8:16 PM CDT

WEDNESDAY UPDATE:
I am having some real muscle pains and word retrieval issues. Also, I am having a lot of trouble staying alert. This is something that went on last winter and I am struggling right now. I had an appt last friday and the news was not so good, but I also had tests. I am waiting for the results.. Reilly is doing well now, and Tim has lost even more weight. He is now at 113 pounds. I will update after our next appt tomorrow. That is all for now, but didnt want people thinking we were MIA...


Thursday, August 31, 2006 5:06 PM CDT
I am exhausted...
Rod has been sick for the entire week, finally back to work today but definitely is not doing well yet. He is on Penicillian but so far he sounds horrible and feels run down...therefore I am doing it ALL...ugh
Reilly was doing pretty well then all of a sudden at 3 am he complained his head hurt and his ears hurt "deeper than I can scratch", as he says. Finally after a LONG NIGHT at 7 am I looked into his ear and was SHOCKED. this poor kid has his ear tube hanging on inside....and it was painful for him. So meanwhile tim had to be at a GI appt in boston and Reilly would have be taken by Josh to the pedi Dr....the poor little guy got looked at by the pedi and it was decided that he needed to go ASAP to boston for immediate surgical removal of the tube because she could not get it to budge and it was swelling up inside now....
SO I am in Boston at one hospital with Tim and poor Josh has to bring Reilly in all by himself to Boston at another hospital to the ENT Dr. After 10 hours of being in pain and crying, the ENT dropped numbing drops into his ears and becan pulling at the tubeS...yep, not one BUT TWO tubes...both sides had begun to come up but got caught up in pus and stuck half in half out....by the time they got the right one out it had built up a huge abscess/pus pocket in the ear drum and it burst....gross by the way...and the second one was a little easier although the ear drums are both swollen up pretty good and have some residual pus in there. He did ear washes...which Reilly JUST LOVED...and did a full hearing evaluation. Reilly has lost his low tone hearing. however it may be temporary because of the swelling....He still hurts from all the action in there but he is asleep now after such a long day.
Meanwhile on the Tim front.....
Tim is having what we were just told today, are generalized seizures....wow, what a gut punch...he also has lost so much weight that he is now going back on to G tube feeds to see if we can stabilize him. If this does not work, we will go back to other options, but I am not so thrilled at damaging his liver either...so if we can remain off of TPN for a while, I will be happy.
It is scary to know his brain is changing. It is affecting so many things and one of them is educational. I am upset by this as he was so far ahead in school..and now he is behind. Not in everything but he cant even compute things any more like he did...so he is struggling with that as he knows he was better before his stroke.
I am exhausted as I have been running to and from places doing a lot of stuff...I am in great need of a personal night off...can mom's get those?? how about can mom and dad get those?? I sat down and realized in 21 years of marraige, we havent been away alone more than 2x....and that includes a HONEYMOON!!! o well..I would like to say "some day", but I dont dare! Its hard to remember we are husband and wife some days...generally we pass out after we look at each other and say, well we did it another day....we really need to remember who we are ...like I said "SOME DAY"...
I was driving today and it really hit me hard....I need to make a confession here...(lol) I know I am not supposed to love anything material, as it signifies "love of the worldly things" but I will admit..I LOVE MY VAN! Reilly was screaming and crying and I put him in the back seat plugged a movie in the front and bingo..reilly settled down and watched Bambi! More than that, I saw 3 broken down vehicles and I realized that would have been us. Last year I would break down a lot or go without heat or AC...we would have to bundle in blankets to be warm enough or hang out windows to cool off. The van had mold in the back and I would end up sick everytime as I am allergic to mold...the only thing in the back right now in this van is a beach chair and a few sand toys...so we can sneak off the road and hit a beach on the way in or out of Boston....
So Yes, I am so in love with this van. I finally have a sense of security, and safety, plus the kids have been healthier due to being warm or cool...the right way.
So thats my "ahhhhhhh" moment for today...
I am off to try and cook supper, so I can get my sore body into bed....
Thanks for visiting, please sign the guestbook if you can, we love to read it...

Sunday, August 20, 2006 7:25 PM CDT

Been a tough week so far....
I am really struggling to get through it.
To start from the top...
josh suffered a loss this week. His rabbit died...Also Josh has had horrible pain in his stomach for about 6 weeks, lost some weight and even struggling with reflux. The school work is going well, he has a 3.5 GPA, but he is struggling to keep his health up, work and rest. I am not sure how he will keep up this pace, but he is trying.
Kris had another seizure episode. He is eating like crazy, but not one ounce of weight gain.
Tim has been seizing a bit, losing a lot of weight. Down from 136 to 118 now...He has pain, and complains about reflux and being so tired....He also had a friend who moved away come to visit him, as a surprise, and he perked up a bit. He misses this person terrible and having him come by really meant the world to him. Hey S, if you are reading this...you are the best! love u
Lianna is having set backs...she has what seems to be a neurogenic bladder. We have spoken to a couple of Drs and they agree it is what it sounds like. this is scary as this just means progression for her right now.. Hoping it was just the heat stressed her body and maybe now it will settle down again.
Reilly is not sleeping well and neither am I because of him.
I am really struggling emotionally...cant put a finger on a lot of it, but some I can. There is far too much stress going on, And I am spending way too much time in tears this weekend. Way too much loss, way too many medical issues, and way too many thoughts in my little noggin.
If it wasnt for the fact I have such a wonderful group of friends who I can call and talk to, pray for me, and vent to..I would not be here in one piece.
School work needs to begin soon. Drs want Reilly in school for some time away in a "normal" school environment away from medical stress. I need him away for my sanity! but no one will take him without all his shots. He cant have them all with his immune system dysfunction. so then I am told, pre school is not mandatory...ugh! private preschools are out of the question...so I am fighting the system and I am not going to bother anymore.
well, I know God is here because if He wasnt I know we would be far worse off.
Blessings of the week were:
WCVB tv said we were invited to the studio on labor day...we have our taped interview showing then for the MDA and then they will do a live shot with us....praying for exposure of mito to be out there.
a friend who moved away came back for a visit and really blessed us both knowingly and unknowingly.
tears have flowed freely and allowed some much needed stress relief.
quiet times have happened a bit. This has been a blessing for me as I have needed some times to just chill.
The house addition has begun to gain some steam. Praising God that we can finish this and turn it right back over to be used so that the kids can have friends over in a safe environment....and hoping that a homeschool meeting or two can take place here.
pray that we can find a place to go to and have a vacation at the end of this summer. We have the money from the flexible funding of respite. We need to use it directly to benefit the kids and we want to take them away again from the busyness of life here and enjoy the last quiet time we can for a while...praise God this funding exists. We will buy some shoes, clothes and take them away for a couple of days (somewhere...just dont have a place in mind yet!)
thanks for reading up on us again....please pray for our church, our friends, and our mito friends..

Friday, August 11, 2006 10:54 PM CDT

Once again too long between updates...
once again there are many reasons.
Tim has had some issues with the heat and finally yesterday when his g tube was giving us trouble, we had to go in and fix it..but he decided to give me a run for my money...he had a brand new type of seizure. He chose this one to freak me out. He felt it was needed to roll his eyes back in his head and go limp on me...he kept choking and coughing too. it was not fun. by the time I got to the hospital he was very post ictal.
it just hasnt been fun.

Lianna and Reilly have fought off minor things from stress on their bodies.
Kris had another seizure last week where he stumbled and almost fell...he said he had the same feeling as the last time but has never had the feeling again, except when he stumbled and became disoriented. too many stressors on the bodies of all of us..
josh is really struggling too. he is really having terrible stomach pains again. Lots of GI issues.
BUT on the good side of things, he finshed his summer courses in college and is carrying a 3.8 GPA and has been recommended and accepted into honors english!! We helped him with earning money for school so, for now he hasnt had any loans...and he has done 4 classes. He will be taking 4 more, and will likely pay most of it and get a loan for the rest. He is so excited, and it is nice to see his grades...also proves to me, HOMESCHOOLING was good for him and I did a pretty good job!!! yippee..

Other praises..
Rod has a new position with in the same company..stil doing consulting, but at least he has the job for another 5 mos...so we have a break from stress.
Our insurance had an abrupt change and we looked into a cheaper plan that we were offered but it would be 300 cheaper, yet not cover some of the things we need for tim. especially his fluids and compounds...so we have to pay an additional 400 a month, but in essence we are saving the 4-4500 it would have cost for the other fluids/meds..its a no brainer....meanwhile we have cut the last of anything remotely considered a bonus for us in order to save any penny we can. gas is truly killing us...I am starting to wonder if horse and buggy may be an option for so many trips into boston! o well

well that is about all for today..

TUESDAY, August 1, 2006 9:39 PM EDT

We could definitely use some prayers right now...This is a quick update.
the heat and humidity is really bad and Tim is dehydrating so fast. We have had the 2 small AC's that we have, on all day and night. they are not keeping up at all. We have 5 fans going trying to cool us down a bit. It is 9:45 pm and outside it is 92 degrees, dew point 74. The problem is, inside it is 89 degrees and just as humid. Tim is not drinking anything as he feels sick, his body temp is dropping, and his urine output has only been 1100cc all last night and today. He has had his IV running but nothing is helping him stay truly hydrated. I got an additional bag of fluid to help, but I am scared this wont be enough. Lianna and Reilly are really having trouble. I am still sick with a sinus infection and its going to my chest now...Kris is starting to wilt. He actually took a nap he was so drained today...
Please pray. none of us are doing very well and we have a few more days of this...We have company coming in on thursday and we need to be healthy!!!
I will update when we have news on how we are doing..



Friday, July 28, 2006 10:12 PM CDT

Ok, so I havent been all that good with updating lately...there are reasons!!
I wont bore you with them but please know there really are.

We had such a peaceful and beautiful 3 days in the mountains last weekend. It was so nice. the weather was rainy a bit but it was perfect for us. Nice and warm, but not hot. We had a real family time. It just was perfect.

On to the updates..

Tim is not doing all that well. He is struggling with his neuro issues still. Problem we are finding is his confusion, and the fact he is unable to remember facts or things he should know. He heard me say I had to return something to target at the mall that my mother got for Kris. When I went to go there, Tim asks me, "is there a target at the mall?" I am serious, it has been there for 5 years. he goes there when he goes to the movies. He sees it. Yet he was confused. Even when I told him yes there was a target there, he said "oh, ok"...I am concerned....
He just isnt acting right. we finally have the seizures under control (I think!!) the ones he was having are under control now, who knows what this new stuff is.
Tim is also now down to 122 pounds from 136 in may. we do not know what is up.
Lianna is still struggling with being sick too. She has never ever been so sick so close together. Usually she gets a break of a few months. this year they seem to be piling up on her.

Now as far as the job issue goes....we are coming down to crunch time here. Rods job is up as of September. He will only be guarenteed 8 hours per week for september and october. This doesnt help. He may get forced to travel again...problem is the jobs available are in california, and miami. neither one a bad place to visit,...but travel to, is hard each week. and they will require 40 hours onsite....which means he travels home for a day, or travel every other week. Our family cannot do this again.
We may have to put him back into training in order to eep him local...I dont care. I would rather be in debt for the rest of my life (well, I think we will be anyway) if it means he can stay in the area.

On a "funny" note...
Reilly was in the bathtub today and slid on the shower curtain. He ended up ripping the whole thing off the little rings it sits on...so I had to go and replace a shower curtain....WE NEEDED A CURTAIN! no one needs to be showering in front of a mirror! well anyway, I got into wal mart and found a curtain on a clearance rack for 2.99 and a toilet seat cover for 1.74! So anyway I brought it home, put it up (actualy it completely changes the theme and design of my bathroom...all for under $5!) and then forgot about it....about 2 hours later, lianna has to use the bathroom......after about 10 minutes I asked her "Lianna are you ok?" she giggles and says "Yes mom, I am just finding the pictures hidden in the shower curtain"...now you may wonder why this is so funny....
the shower curtain is the sky! it is deep blue with light blue and pretty white puffy style clouds, with whispy clouds as well...so u can see, it was like she was laying on the ground and watching the clouds form in her imagination...LOL...o well, I told her to get out..so she comes on out (after she washes her hands!) and she proceeds to tell me how she found a lion, a snake, and a frog......ugh
well. I am off to bed. I hope you all will pray for my mito friends and all the people who have been there for us. Please also pray for our drs and nurses...
To all my CB friends, I am praying for you all..

Tuesday, July 18, 2006 4:25 PM CDT

Wow, it has been a while. We have ridden a very emotional and exhausting rollercoaster lately.
First and foremost, we have had every virus hit here and we are glad we seem to be over the worse of it...for now.
Right now, Tim is not doing well at all. He had a gut problem that caused him to stop absorbing meds and nutrition, and it set off clusters of seizures. We finally did probiotics and settled his tummy down a bit, just enough to begin to absorb his meds again. Now that we have JUST THIS LAST WEEK gotten his levels normal and therapeutic, his gut is not working right again. So far no real seizures, but we can see a change today in him. We are going to work hard to keep things going in the right way. He was seen today as he has a major infection going on. He has been given rocephan with the hopes we can clear this up relatively fast. we are supposed to leave this week for a couple of days.....ugh figures. The Dr did say we would be ok going away as long as we remain within 3 hours from home...which we will.
Rod was offered a job...IN TORONTO....we keep holding on.
We are actively praying that God will just keep sustaining us with our needs...not our wants, but our needs.
The addition is going well on the house, we have a huge gaping hole now and in the next few days we will have footings...and by next week we hope to have the foundation laid.
Meanwhile we are nervous about Tim, and we are nervous about our situation in the home. Please pray for the Job, the health insurance and our finances. We are sinking fast. We are trying to tread carefully, but everyday normal things are starting to add up and bury us...
I have cancelled many appts and now we have a chance of catching up. If we can get the meds under control for me, it would be nicer!! the state insurnace no longer covers any of my meds and the co pays have been a killer but for now we have a reprieve. please just pray for us that we can remain stable and sane!
I had my appt with neurology this past week and it really hit home that this was my follow up in which I was supposed to be free from any signs at all of a stroke....it has been a long time since I have had PT, and when she began doing the actual exam, she noticed many deficits in major areas. When I asked her why things were still this way she dropped the bombshell on me. She stated I had a stroke within my brain stem and it effected many areas. She said the thalamus was affected and most of my issues left over are balance, visual, perception and word issues. plus other issues related to autonomic dysfunction. When pressed to give me an answer as to whther this will continue to improve she said I have what I have and we need to prevent another.
It has simply been hard to hear that how I feel today is how I will feel. But God has allowed this for a reason and I cant begrudge Him the respect He deserves...even if I dont like what it is doing in my body.
Well I am promising to be better at updating...really..Sorry for the long breaks....

Tuesday, July 4, 2006 10:15 PM CDT

FRIDAY UPDATE:

Lianna is still sick and now Kris is sick as well...Josh has relapsed back to the having open sores in his throat too. This is getting interesting now....


HAPPY 4th of July!!!

A quick update...
Lianna has had a tough summer so far! we found out her leg was a buckle fracture, and her foot has been sore still. We go back in a couple of weeks to be sure it has healed well. She was put on Baclofen for the pains she continues to have and she has responded perfect to it. not one pain at all since then. THEN the poor child had been exposed to chicken pox and since she was the ONLY child to have had the immunization for them we were not at all worried...uh huh...leave it to my kids...She got the chicken pox. She is not contagious, but she certainly had a few. Then today we decided to go see fireworks, and sure enough Lianna decides to give us some cyclic vomitting...poor kid. She just has it tough.
Reilly had 4 teeth extracted and he did well. Now we have to work on the other teeth that are coming in dark. But as a plus for ME, he decided with some major bribery, that it would be great to potty train. He has been working very hard on it and he finally has it so I would say he is about 90-95 percent trained. I still get worried and use a pull up when he is in the van for any time. I also dont even have an ounce of night time potty training done. ALTHOUGH he has begun waking me up 2x a night...to pee....ugh! I was OK with night time diapers! LOL...
He is all excited as he knows once he was trained for days he could do many things. He is going to story land, and he can now go to school...he also threw in the fact he can have a sleep over now.
Tim is really having a huge issue right now. He has had seizures in clusters almost every day.we increased his meds and they are getting better. He also has been struggling with the heat and trying to be normal. He is simply struggling and we are trying to normalize things for him. This has not been easy and we need more help with finding a way to make it better for him. He is also grieving his best and closest friend. He moved a couple of weeks ago and Tim certainly has not been the same. tears shed and miserable. We know this is not helping his body at all. He feels left behind and alone....hoping somehow we can make this better...
Josh was sick for a day...thank Goodness it was only a day....
Kris is doing ok for now as well.....

Right now, Rod has considered and will most likely go back to work for his old company. please pray this will work out well. We are really struggling and face a crisis soon if we do not right this ship. Losing my insurance like I did really set us back A LOT. going back to this complany will get us back on insurance as well, so no more cobra. still praying!
I found out this past week that we will get a small vacation out of this summer after all. We hadnt used our respite money that we had. I actually forgot about it. So I asked how we could use it and the agency told me "anything that directly affects the kids, you can get a receipt for, and is non household related, is fine" So I asked about a few nights of hotels and meals while we use the GKTW passes. Well I found out this week that yes that is acceptable as long as the kids are with us and we send the receipts in...YIPPEE..God has been SO AWESOME to us for it to be a reality!!!! so we are going to plan a few days with the pass and see what we can do. This was a huge God send!!!!! we figured it out and we have about 5-6 nights of hotel and at least 2 meals a day each day available...(as long as I choose the hotel!..I am frugal)
my health is staying stable to some degree, and I am trying ike crazy to fit in the things I want to do with the kids before I go in for any surgery. I found out with the placard, I can park for free at quite a few beaches. so we have become beach bums! almost. Kids love playing in the water and I love seeing their faces. We are averaging 4 hospital days a week, so I hit the beach on the way in or out and stay for an hour...just enough for fun.
we will be looking into a wish trip for lianna....she wants to do hers soon, and we were hoping to put it off, but Drs all feel now might be a good time, as she is healthy and I will be finally somewhat stable once I have surgery.....uh huh....so we will speak to the people and figure on a date....
well, sorry it has been so long since I have updated. We have been busy, in hospitals and very tired....
I am trying though...
till next time. Keep FROG'ing with us!!

Sunday, June 25, 2006 8:00 AM CDT

sorry it has been so long since an update. I have been so busy with things that I have no idea how time just ran by us.
first of all I have been sick AGAIN with bronchitis, 2 ear infections, and a sinus infection.
The kids have been fairly healthy. The PCA we have, came down with chicken pox...how funny!!
We have been pretty much out straight.
Tim has not been sick, yet he lost a total of 13 pounds in 8 weeks. we are trying to figure out why he has stopped eating as much. He just picks at food, and is losing. His reflux is getting worse. I personally think we are cooking up an infection. YUCK
We are in the process of making plans for using our GKTW pass. We have our list ready and then we are going to put the list to dates....we have some friends who have offered us a place to stay when we go to a few of the parks in one area...HOW COOL HUH?!
Reilly is almost potty trained...almost meaning when he remembers he does well..It is pretty obvious he still has times when he doesnt even know he has wet himself. It looks alot like it is a bladder issue like Kris. We will see.
Now if the rain would just stop we would be a much happier crew here. It took us 4.5 hours to get home from boston the other day as the main highway and side roads were all shut down as they flooded...it was horrible..and I had 3 kids. I am much happier being here where it is dry (for now)...

keep the family in prayer...
For ALL of you who have emailed and asked.....HERE!! LOOK BELOW! I finally have it....
We just got the flyers for the dollar drive that has begun in NJ for our family. If anyone wishes to help out with this fundraiser let me know....I will direct you to the person who is running it. Basically all it is about is donating a dollar and watching the dollars multiply.
the second fundraiser that is beginning this week is the quilt raffle...it is for a queen sized quilt handmade by a professional long arm quilter is mississippi. If anyone wants a raffle ticket, I have a bunch to get rid of and I can also direct you to the person who is running that fundrasier....
we are having all of these things go on to help with the cost of the addition and with the cost of making the van accessible. If you know of anyone who would like to help out PLEASE email me and I will get you in touch with the peole who are in charge...OK??

I will update as I have time this week...

Wednesday, June 14, 2006 10:32 PM CDT

I just wanted to let everyone know that Tim and I are both sick with whatever it is Tim decided he wanted to share. The Pedi Dr put tim on augmentin for a sinus infection plus he has laryngitis (however I did request they not fix that so soon) and he has gastroparesis again...he is now down 13 pounds in the past 8 weeks. This is not going over very well with GI Dr.....we go next week to see what we are going to do. Looks like we may go back on feeds or something.
I have a sore throat and really feel like I am swallowing razor blades. I have my pulmonary appt tomorrow so I need to be ok to do that...
On a GOOD note..Reilly is trying to potty train. Ya he is having a tough time some times, but he is really doing it. gee, only a year behind!! wonder how long this will take? He is getting stickers and when he fills up his whole chart we are ALL going to go to story land for the day...we have a GKTW pass to go there for free....so he is all excited about that. No worry though...it may be NEXT season at this rate! but it is a start and hopefully he will succeed and be proud of himself.
Part of the reason I have been so upset lately is because I havent had the chance to sit back and take a breather. Either I am innundated with medical things at home or I am in a hospital innundated with medical things. There are so many things that need to be done here and neither Rod nor I have the time to do it all and it is stuff only we can do. So it makes this pretty tough.
I also found out on monday, although the state of massachusetts has agreed in WRITING that I am disabled, and I qualify for masshealth medical insurance for life...I now have a $16,726.85 DEDUCATBLE...I cant afford to go to the hospital and park never mind now come up with that amount of money per year before I have insurance to cover me....Needless to say I am in shock...state will not budge on anything, and Rod is not too happy either. Now that I have been deemed disabled we are going to look into SSI...Meanwhile I have cancelled almost ALL my appts. I am going to tell them to cancell the heart surgery and port placement, and I am going to stop having fluids 3x per week. I found out it is $250-$320 per infusion 3x a week...so I will wait until I am near crisis and go to the ER for a few hours and pay a $50 deducatble. simpler....
We have been so busy with kids and finishing off the school year that I have had no breathing time. Kids will school through the summer and we will do the GKTW passport for some parks...at least free times will sound very appealing. I did talk to some of my Drs and a few of them have agreed if I dont get away from the home for a couple of days to a womans conference or a hotel room for rest, I am going to have a stroke...not metabolic either but from stress. My blood pressure is bottoming out and my sugars are all over the place. Rest is needed but I cannot rest with reilly in the house and with everyone else sick and needing me to help. I have been using the state park pass we have. we have gone to a beach that is a state park, on the canal in cape cod...that has been nice. Also, we have gone to buttonwood park and zoo with a pass. I have found such peace with doing this stuff, and kids are loving it, but we need to be healthy to keep doing this stuff!!

Pray that Rod can get a contract job, with the company he is in, for better pay so we can pay for the deductables now.
Pray that the raffle fundraiser that is going to begin next week, will supply the complete need for the house (if you want info on helping with this fundraiser, PLEASE email me)
Pray that I can get rest...real rest. Either at home or away...I have FF miles for a free flight...but that doesnt help me! I just want sun..nothing else. I will not even eat! JUST QUIET.
Pray for Josh as he finishes up with college classes. He is doing well, and his GPA is impressive...pray he can save up to begin again in july.
I will update after my pulmonary appt results are in and we know for a fact what this mass is doing in my lung and if it is affecting my breathing or oxygen levels...

Monday, June 12, 2006 9:55 PM CDT

Things have gone from bad to worse in many ways.
Tim has been very sick past couple of days and is slowly getting better. I was worried it was a line infection but it looks to be food poisoning for now. We will decide if this is true when it is apparent that no one else gets this "magic flu"....
many other things have just gone wrong....and I know that I should not get discouraged but in all honesty it is really bad and I am discouraged...if I listed everything out, people would think we are lying....but so much is happening so fast that it is making us shake our heads.
One good thing, Reilly is being bribed to potty train...he is working really hard at it. it is going slow...but he wants so bad to go to a amusement park. with the pass we have from Give Kids the World, we can go to almost any park we want to for free. It is good for one year. So we will do this as a bribe....we are going to try and do the other free things on that pass as well. GKTW gives it to the wish kid and their family to make the wish last longer when times are really tough...well I cant think of a better time to do this. besides it expires at the end of the year and we havent used it yet....and we need to.
I will update the appt results this week after I see pulmonary.....

Wednesday, June 7, 2006 10:42 PM CDT

THURSDAY UPDATE:

Just wanted you all to know that after a repeat x ray, it was decided the thing they found is indeed some sort of density that loks like it is more muscular, or past injury to the lung that has left scarring. I am meeting with the Dr again next week to discuss what all this will mean for me. but he said after today he does not seem as worried as he could have been...so God really answered the prayers of many people...thank you all for praying and pray some more next week so we get more good news....I dont care about spots, or density! I just care I am going to be ok!!!!



sorry it has been so long....I didnt have time nor have I felt all that well.
This needs to be rather quick..
Our area of town recieved 8 inches of rain today and we got flooded....Kris' bedroom got ruined and we had to clean it out tonight, so we have shifted rooms around for a few nights....not fun
Lianna is walking much better and feels great. The fracture is and was a buckle fracture but it was mild and she feels better...just dont touch the boo boo...then she cries.
Tim is having struggles...stuff no one can see with the untrained eyes, but he is walking weird again, having numbness and is losing weight slowly. He is wetting the bed all of a sudden too and has had 2 seizures this past week...not fun
Josh graduated on friday of last week..I will post cap and gown photos soon.
kris is doing well.
Reilly is reilly...what more can I say.
I had some results come in that are pretty bad. They found a large mass in my lower left lung. They said it looked like some sort of calcification. The worry is the amount of exposure I had as a child to asbestos through my fathers work. He died from mesothelioma...all of the drs agree we need to investigate this closely (and immediately), mostly because it has been proven my breathing has gotten worse. I also do not breath deep enough and have slightly low sats, but nothing that needs O2...more of resting up and room air is ok for now. so we will folow up tomorrow like they said.. My MRI shows no new damage and the theory is a stroke episode took place again. would really like someone to pray for a miracle to occur...I would like a HUGE miracle...
people ask me what it will take to derail me and make me freak out...well it happened today. I cannot have this...I know this disease and this web page, like everything else, is about the kids...but right now I really need you guys to pray for a miracle for me....please.
I will update when I get more info....

Wednesday, May 31, 2006 7:06 AM CDT

UPDATE:
Pray for us this week as many things are going on in the next 3 days...
Lianna fell on monday and got her left (BAD) leg caught between 2 rocks on plymouth bay, and tore up the skin pretty good, broke a bone in her foot, ankle and possibly a buckle fracture on the shin bone. She is in a split cast until the skin cuts and gashes heal. once the swelling goes down we will be re x-raying the shin to be sure it is only a buckle. She also has croup again and is wheezing a lot.

Donna has an interview in NY at the service dog agency, to find a suitable dog and see what her needs will be. This is going to be stressful on her body as she is having pre stroke issues again. She is having an MRI today to be sure nothing new has happened. It looks right now like she could have had another SLE this past week. Many Drs are involved this time and are all very worried. They are all speaking together which is positive.

Josh began college this week and is loving it, but he graduates on Friday night from HS. We will just be getting back from NY and this is a long and busy week for all of us. Pray for health and safety.





Saturday, May 27, 2006 9:09 PM CDT


Rod on board this evening - Donna's eyes won't allow her to use the PC much tonight. Doing a full update, I guess.

Josh is beginning college this coming week. He will be taking Math and English at a local community college to begin working on a degree. He can get a two-year liberal arts degree that is transferable to a four-year college. We hope by then he will fully have his desired major nailed down. The doctor has cleared his wrist from surgery, so he can finally play golf again.

Kris is doing ok, hopefully will soon being in the local cable access training program as the first step to his film career.

Tim is losing weight, which has the GI Doc concerned because he has been steadily losing since the TPN was stopped. Would indicate that he is not absorbing enough nutritionally to provide for his growing body. We were there this week to have his mickey replaced, the balloon broke on Sunday. Tim continues to have a wet tract for hs g-tube. The doctor believes that is the way it will always continue to be, requiring a lot of maintenance for granuloma, abscesses, etc. Pulmonary doctor saw Tim and wants some further work done, including a sleep study. His deepest breath is only taking in about 70f what it should be, therefore it is likely that he is not getting nearly enough oxygen at night.

Lianna's has been having pain at night in her legs on a consistent basis. Given her history, the doctor this week suggested a trial of muscle relaxer to see if it is cramping. She has been more active now with her ankle braced up and strengthening, along with some better weather.

Reilly's final interpretation of our vacation week with long term monitoring is abnormal EEG, but no major evidence of seizure activity. Therefore the general thought is that he be having muscular issues (cramping due to high activity, perhaps from lactic acidosis. Requires further follow-up.

Donna has had further set back to surgery. She MUST have IV fluids, on at least an every other day basis. They are having great difficulty with venous access and keeping patency through her fluid infusions (either via collapsing, rupturing, or walling off). The order for her IV therapy expired and the nurse told her today that she will recommend to the doctor that they can no longer accommodate her because of all the venous issues. This points to the need for a port. She cannot safely get a port until the ASD in her heart is fixed. She found from endocrinology this week that she cannot have any kind of surgery until thyroid issues are resolved (it's huge and not properly functioning). The good news is that a loaner chair came from MDA, bad news being that it is too big for our van and had to rent a U-haul to be able to use it! Still trying to identify a good long-term solution for her permanent chair.

3 fund-raisers, Pampered Chef one is ongoing now, others will be starting soon. Part of all this will go to whatever the final soution is for toting the chair around (looks like an enclosed trailer intended for wheelchairs is the front-runner at around $3,000).

Friday, May 19, 2006 3:53 PM CDT

What a week!
Lots of things going on that have taken our breath away....
my big medical appts are nearly over and we now know I have muscle fatigue and weakness that is affecting many areas. This was something I would rather blow off and forget, but it was reminded to me that I simply have to listen to them and do what I am told...ok, sure...
I am still getting fluids every few days and it really does help me feel better.
I could be a real downer and get into the nitty gritty but I really need to focus on good things right now, and I will succeed in that.

Tim is having some issues with his leg going numb. We need to see the Phys. Med Dr again and decide if we need to change meds around to help with that. otherwise things are status quo with him...we added some new meds and they seem to help with seizure activity and also helps him with attention and behaviors..

Kris is really testing the patience of many...he is so skinny yet he eats a ton!!! nothing is helping him gain weight...this is very frustrating!!

Reilly is still not sleeping, but we found out his sleep issues are possibly lactic acid and also, muscle pains..the spikes in the EEG are abnormal but they are not seizures....as far as they know....we will be positive by next week...but we have many things to do to figure out reilly!!!

well, I have a small book here..
We also do have TWO fundraisers going on...one is a dollar drive and the other is a quilt raffle...if ANYONE is interested, please email me...we are trying to desperately raise funds to pay for the accessibility to the van and the home...please if you know of anyone who would like to help, email us...THANKS

Tuesday, May 16, 2006 4:52 PM CDT

We still havent heard any news on reilly's EEG results and we are calling to see if we can speak to them tomorrow...they said they would call on monday but then I was gone all day at NEMC.
I had my appointments and right now, I am still trying to process this. To be perfectly blunt, I just never expected to be in this spot...
This is where I am supposed to say God has been so great to us and kept us together and He will shine through all of this. This is where I am supposed to say with enthusiasm that no matter what is going on, we will perservere...but to be honest right now, I am in a fog far too confused to know what is right or wrong to say....I know our hearts and I know what we believe but to even form an update right now is a lot....
please keep us in prayer, and pray for our Doctors, nurse practicioner, and medical teams...
As soon as we know anything about reilly we will post.

Friday, May 12, 2006 7:17 AM CDT

Just an update to say Reilly is still inpatient and hoping today for him to come home.
I had to be seen at NEMC yesterday because I was in a lot of pain and really not doing well. I had to get a lot of fluid and it was decided the port needs to be placed sooner rather than later. I am very nervous about this, but I cant keep going feeling like this much longer either.
Tim had his breathing tests done and preliminary results show his lung muscles are just too weak. I have no idea what this will all mean, but we will find out next week when we go back.
Josh had an ultrasound done because of his gallbladder pain and during that scan they found out he has an enlarged Kidney on the right side. So now, we have more to do with him. He is applying to college today to do summer courses. Pray he can keep going.
Will update a lot more when we know about Reilly.



Wednesday, May 10, 2006 7:48 PM CDT



Emotionally this week has been a complete drain.
This needs to be quick as I am really struggling with pain in my whole body for the past week.
On saturday may 6th, A little girl named Natalie passed away from this monster called Mito. She was a friend of ours and her mom, Hope, was the one who sat with Tim right after he had his stroke and helped me with handling the tears that day. She was amazing and she will be missed.
My good friend Heidi is hurting from Mito as well....too much emotionally!

I continue to get emails from people about how you can help.
PLEASE....I am so sorry I cannot email everyone back. BUT, we are in real need to make the house accessible and a ramp/lift for the back of the van. We found out that the grant that we were approved for, that was a substantial amount, has been severely reduced and the accessibility has been almost completely dropped. I dont know how I am going to live in this house with out this.....We are in the process of setting up 2 seperate fundraisers...One is a quilt raffle and the other will be a "dollar drive". Once the people who are doing this get the things all set, We will post it. YES, there IS a trust fund set up, it is done through a law firm, And the trust executor is a third party.
...for info, go to www.mitokids.org there is a paypal link direct to the trust fund.

Donna Mello, if you read this can you please email me. My PC died and I lost your email addy with the hard drive...

Please keep all of us in prayer....Pray for a CURE!!!
I have to end now, I am in far too much pain to do much more.
Till next time.

Saturday, May 6, 2006 7:54 AM CDT

So life here is still crazy, but it is life.
The updates dont seem to be changing too much, and in fact have seem to hit a new baseline.
Tim has a fever going on, and there is no clue to as to why. Everything seems to be ok, but who really knows! His leg is giving him trouble with being numb, but there doesnt seem to be any infections.
josh is in bed with fever and a sore throat. Also he is going back into MHG for testing Monday as he is having terrible galbladder pain, again. SO..there is a possibility he will have to have it out this time. We have played the "its junky but not diseased" game for a while so we have no idea what they will do this time.
Kris is simply amazing me. He is struggling with education because of the issues he has, but he is so funny. He went to the library and got out Algebra, geometry, triganometry, and the SAT prep book with DVD. The funniest part about this, which is why I say life is crazy here is, Kris cant do any math right now and he is determined to teach himself so he can pass! I know kids with high functioning autism can produce miracles, but Kris is going to shock the world! He really wants to do this..so ALL of us are in teaching mode right now and we will help him!
Reilly is being admitted on Monday May 8 for his EEG, and will be gone most of the week. I am sad. I hate being without him. Rod will be with him.
I am at a complete standstill medically and physically.
Actually had to order the wheelchair that the clinic fitted me for. I was in shock yesterday from the idea. I am much better today as I really want to go out and do the things for the kids schooling that I NEED to do, and cant because I am really weak still. If I were honest with people when they came by, or called, it would be known, but I hide it because I am trying to keep it all "normal" but this is the part that is killing me. The facade is making me feel like a liar, and I am not liking that. It is true I am struggling with almost everything. The rehab was wonderful about how I feel vs my needs and I am getting a Invacare DTX tilt in space chair, most ridiculous part is they call me bubbles at rehab because I am so "bubbly!"...well they ordered me bubblegum pink as the color....this should make a huge statement.
Neurology appt did not go over well for me. Permanent central processing damage, need to have the heart issue fixed, and he is doing a 48 hour digitrace EEG in the next couple of weeks in the home. he really suspects I am having non convulsive seizure activity.
THE BLESSING of the week is the possibility of a job for Rod and being home more. I cant go into details, but this is HUGE for us and helps the insanity here, become sanity! So this may be the best thing to happen to us in ages.
Here are the latest requests.
-Reilly shows what he has to on this test he has having done, so he can get home earlier!
-Rod gets the job situation worked out
-I can be home more than in rehab or Drs., and that surgery gets scheduled fast so I dont sit here panicking.
-we get the lift for the back of the van. we are trying to locate a used one. we are struggling with this and NEED it for the wheelchair.
-the crazy people living here can settle down and simply be family again instead of strangers coming and going!
- pray for all my friends who are struggling right now with this disease also.
I am trying to update as often as I have energy to, sorry it has been sporadic. I am really tired after long days away from home. I will try to improve this!

Saturday, April 29, 2006 9:08 PM CDT

To all of you who continue to write and ask me questions, PLEASE read the last journal entry with all the answers in it. I will try to put up permanent info on the page when I get a chance....

QUICK update...
Reilly is being admitted on May 8, and possibly be in until May 12. They are keeping him in the hospital until he shows a seizure on the monitor. I am praying he shows one the first day, so he can come back home. I do not like being with out him!

Tim has a new PCA, who is one of the nicest people you would ever talk to...but he is his "own" person when it comes to appearance!! WOW...He is a psych major and loves working with kids as a pca. He doesnt get benefits working as a PCA so he is waiting tables to get health ins. but chooses to work for kids with special needs...He is so good for Tim and great with him. I hope this works out for Tims sake....

Kris is doing well...
Josh is doing well. His wrist surgery was a success so far. The Dr is very impressed with the way it is healing. Josh is planning for college...but mom and dad are choking over college!

Lianna is fighting a cold again. coughing and wheezing.

I am still having major issues. Rehab will end on may 19 for me. They said there is nothing more they can do for me. So what I have is it....Dr K is very worried about where I am. He said I am not safe, nor predictable healthwise yet. My speech is good most days, but like today it was very shaky and unsure. My word retrieval is off and on. My brain is like living in a fog. I zone out easy. GI tract is still poor. and Kidney Dr is worried about the numbers he is seeing. My eyes are getting weaker too. So may other things going on, and suffice to say, Dr K really is very worried and has expressed his concerns to the point of asking me to keep him updated daily on life with me. So I speak to them daily. When I saw him, he couldnt even explain to me why this is going fast. He simply said how sorry he was, and that they are doing all they can, and I am doing the best I can... I am going in for port placement soon...(this month) Not happy, but need it. I live for fluids now...or live because of them..one or the other.
I am going to the wheelchair clinic on friday. Does me no good as I cant lift it! It needs to be motorized and we have the tow pkg now, but no lift for it. I have no idea what we will be able to do, but hoping the rehab people will not give me too much slack over this. Only reason I am walking so much is I cant lift the chair myself, so I walk if I can. If I cant, I just dont go...even a Drs appt I will not go to, if I cant do it.
Dont laugh...but I have gotten into the van each day and just prayed that SOMEHOW GOD would just fill the tank with out the gas station...and gas has lasted a little longer I think...if not, at least I see it that way...either way the guilt is there but I know I need to do this so I can be a better mom to my kids.
Long week next week. I will try to update next week when I can.

Thursday, April 20, 2006 5:31 PM CDT

I have had a bunch of people email me privately and ask me a ton of questions about things going on and how we are doing it all...instead of answering all of you individually, I am going to do it as part of our update. Sorry if it is less personal but I have a lot less time on a computer lately due to being sick, sore or simply exhausted.
How are we doing it all?....I do not know!!!! Prayer by some friends is probably the only answer I can give.
I am having tremendous pain in my back from rupturing a couple of discs in my lower spine...and PT is causing it more pain. BUT my leg is improving in strength of the muscle...but the muscle fatigue is still really bad. I still tremor after a litle bit of excercise and I have about 4 hours a day where I feel actually human.
I am feeling tremendous guilt having to go back and forth to boston everyday. I am not here for Reilly like I was for the other kids during this critical time of his developement. He misses me and I miss him too. I feel guilty with the amount of gas it is taking to go back and forth. Each time I go to the pump with Rod I see his face, and I feel so inadequate. I have cancelled rehab a few times just so I could stay put at home and not further kill Rods wallet, I have even cancelled reg. Dr appts. I simply do not know what to do!!! It doesnt take much to reduce me to tears lately and I see how this is hurting the family. It hurts me so much that I am not the mom I could be. Not feeling sorry for myself but I see the things my family is having to do to compensate for me being unable to do things. When I see Rod hurting physically and emotionally I feel so bad that there is nothing I CAN DO for HIM. There have been thoughts of wanting to run away and letting them have freedom from watching this mess, but then I see it is their mess as well...I fight harder to get better and ultimately hurt myself more....it is a rat race and there is nothing any one of us can do.
Reilly will be admitted in the next couple of weeks for a long term monitoring EEG. He is having seizures...always has, but it never interfered with life so we knew it, but they did nothing until it became an issue...now it is an issue I guess....so we need to see how often this is occuring and what we can do about it. So he will be going in to Boston medical center for the tests...Rod will have to stay with him as I cant...SNIFF SNIFF...
Lianna is doing well and her pulmonary visit today showed decreased muscle tone in her lungs, and we should do a sleep study on her, but she will remain on inhaled steroids and inhalers, plus oral meds....o how fun! We also will be doing Immunology studies on her to rule out this as an underlying issue.
Tim is having line trouble, not infection, but he shakes when we flush the line..we will get this addressed tomorrow. His g tube trac is bleeding and they will address this tomorrow as well.
Kris is fine..AMEN
Josh is fine...AMEN AGAIN.
Rod is exhausted. When I even think about him, I cry. I cant even explain how tired he is and how sore he is from the amount of stuff he is doing. My heart is simply breaking at watching him struggle to keep this together.
The other questions that were asked in emails were
How are we paying for gas and how much are we spending on avg? We are not paying for food too often so we are shifting the money over to gas. It is costing us over $120.00 a week on gas alone.
how are we paying for parking and how much is it$ LOOK ABOVE! It costs us minimum $15.00 a day at least 4 if not 5 days a week...if I have to do more than one hospital then it can be more...for instance friday last week it was $5 at rehab, $9.50 at NEMC, and $11.00 at childrens...ONE DAY!!! So it is crazy....we are dying with this part of this WONDERFUL disease.
Do we need anything? We ALWAYS could use something. If someone knows how to clone, I am sure Rod could use some help. Just kidding...but seriously, there are so many things in the house that are needing a man to do and my kids physically cannot do alone, like yard work. Rod has NO TIME to do this after cooking, cleaning, child care and medical care, plus working 45 hours a week... so if you know of a rake that is bored, send it here!
Can I make a meal to send over and what about reilly's allergies??? Well we will NOT turn away a meal!! Home cooking is to die for! (bad pun) YES, please if you feel God leading you to do this, please do. Reilly's diet we have under control ourselves. It is very basic and very easy for us to worry about reilly.
Is the trust fund still active and where is it? YES, we still have th trust fund open. This fund helps us pay for supplements for us all, and for gas and parking if it had enough in it. Any one can go to the Rockland trust company, and simply tell them you want to add to "the Thorell Family Trust" fund and they will do it for you. We also have an address of "Thorell Family Trust po box 232 carver mass. 02330". You can send something there and it will go to the bank and be added to the fund.
Is there something the kids would like? Yes, the kids would like people to call and visit...the kids really need to be out. Tim wants to play ball and see the outside, but has limited time out due to me being in the hospital...Reilly just wants to play, and Lianna wants to be a tom boy and princess...They need friends and people who they know they can rely on for talking to them, and also people who dont shy away and become afraid of illness.

OK...That was all the questions....I tried to answer them as generic as I could. I know alot of you wondered these questions in a more personal way, but I just cant reply to 20 emails and do them justice. I will keep this updated as best I can, but I have so many appts tomorrow and then this weekend fluids at the hospital and sunday I would l ike to go to church then PASS OUT! So I am sorry if I am not updating like I should....I promise I will try harder.
Thank you for the prayers and the emails...keep them coming, it helps me see I am not alone!!! and I REALLLLLLY need to see I am not alone!
Donna

Saturday, April 15, 2006 7:51 AM CDT

Sorry it has been so long since I updated. Just so much has gone on...
It has come to the point where the Drs are no longer just concerned but now are very concerned. This in turn makes me worried yet also knowing that they care so much about us that the choices they make will be the best ones. Even if I hate them!
The kids are doing well right now, except Reilly is having trouble with growth and possible seizure activity. We will find out soon. Neurology feels these are seizures like he had in infancy...but we do not know.
Instead of updating too much on us, my heart is really burdened by some friends health.
We saw Little Natalie on Thursday at NEMC and she looks so tired and it hurts me to see her like this and to see her mom Hope looking so tired. They have fought the valiant fight and could use a few days of peace. Please pray for this little girls body that she will stabilize just a bit and hold on long enough for her transplant. She is just the most beautiful girl....please pray for her.
And my sweet friend Heidi....it hurts me so badly to see her going through the things no mom should have to go through. Not only family sadness and grief, but personal sadness over her own body. I cannot imagine heidi not in my life and would gladly give up something if it would give heidi back one thing! Yet she is remaining a mom and she knows where her heart is...she is amazing and strong.
These two people and more, have given me strength to keep fighting.
I have realized over these last few days that God has placed the most amazing people in my life. 2 very special medical people have walked me through the emotions I am having right now...not telling me I am wrong, but yet telling me I am right on track and they are there for me..not as physicians, but as close friends....One even talked to me the exact way I talk, and gave me the words I needed to hear so I could keep plugging along. Thank you so much Leo!
After this week is over we will have more to update about surgery dates for me, and what will be going on. I have many appts during the week. I cant promise an update until end of week....but meanwhile please keep the two people I wrote about in your prayers....
HAPPY EASTER to ALL of our friends!!

Wednesday, April 5, 2006 12:45 AM CDT

I am not even sure how to begin or end this journal note...
I will say I hate this beast called Mito, and I will say I am not going to allow it to control my life or my kids.
Things are in a very bad state right now and they are just too much to go into at this moment. Things we thought we had time to plan for and wait on, are now not the same options. Please pray that all the choices being made in the next couple of weeks will be the best ones.

Kids are doing fairly well. I do not like the fact that Kris is still coughing and still looks wiped out and winded. He is doing a lot of helping with the kitchen remodel which he is enjoying and he is actually making a difference.
Timmy is growing height wise, but is losing a couple of pounds. He is looking not so fat, and actually starting to look a lot older. I have expressed to my 3 boys that they need to stop growing now....I am losing my babies and they are becoming men....( oooooh I shudder to think!)
Lianna is doing well with the AFO's when she uses them. She seems to not have as much pain, but she is cramping still in her legs.
Reilly goes on monday to Neuro. Finally! It has been so long to get in and it is finally coming up now. we will get some of the little things out of the way and actually hope to see some real improvement.....
Well that is about all....
Please keep my friends in your prayers...there are so many who are battling right now.
Till next time..

Hey Lori??? I lost your number and we want to get in touch sometime in the springtime to "play"....let me know.

Friday, March 31, 2006 8:17 PM CST

We have had a rough week...probably more emotional than we have had in a while...between the answers we got tuesday and wednesday and then more even today.. Feeling like things will just never get better physically for all of us, And also realizing just what is going on to a new level. And, realizing things, and accepting things, are very different...accepting this is harder than one can imagine. Like I told the PT today "I do not care how much I hurt, I wanna be a mom and I am going to kill myself to do it...so lets go!" Trust me....I think I killed myself!
we got appts for me at wheelchair clinic...it will be 6 weeks before I can get in and then 2-3 months for delivery. Meanwhile I am house bound unless I am at PT/Hosp. I have a true understanding what it means to be stuck. I can manuever at home but I cant even go outside...and we still do not know what will be covered. I am waiting for the MDA to call back with a chair that the PT suggested. This will be on a loan, until we get the right one...but I was warned it will not be what I need, it will only be for hospitals and PT time.....o to be independant again....
Then after going through the emotions of feeling like we need to carve out a new baseline, we have the happy emotions hit.
Friends of ours brought A HUGE amount of food....supper was SO good tonight! THANK YOU!!!! so the emotions of someone caring this much really hit me as well. I guess we are all just basket cases right now! The feeling of pure love fills our hearts when we see the kids laughing and eating real food. Tim grabbed a big plate and lianna too..even reilly was bugging everyone to make sure he had MORE...it was fun to see them so excited (they do eat, but you never would have known it, seeing them grab it!!)...They say food is a way to a persons heart...its true, a meal-food-snacks-drinks, this makes our hearts swell with gratitude..and this also gives Rod hope....


so here are our prayer requests for the next few days...
* Rod needs prayer. He is running crazy, and I am very worried about his ability to remain healthy right now. He is under tremedous physical and emotional stress and I do not know how much more he will be able to do with out having some guy friends who will just do guy things and even call or email him with support.
* Kris needs prayer as he is still sick. He is getting better but this taking him a long time. He cannot stop coughing and he really has lost significant weight.
* Tim is still feeling a little sick, but he has done well with recovery thus far. He is fatigued and is coughing still but he is doing far better with this virus than he has done in the past.
*Josh has his first prom next week and he is really looking forward to this. pray for his safety and his enjoyment.
* Donna, for acceptance of the progression, and the continued fight to improve. pray for the intense pain that is going on, and for the systems that seem to be shutting down for now...a service dog is desperately needed for independance and it can happen very soon..pray for a scholarship to come through! and pray this truly happens like the Dr would like.
* Reilly...this boy needs to be potty trained but I am not here to even help him. He needs divine intervention! He is 4yrs 4 mos and not even close to this...I cant ask Josh to work with him..that would be unfair to josh as he is doing it all...
well that seems to be the update for now..will update next week as appointments give us more info.

Wednesday, March 29, 2006 7:29 PM CST

Not quite sure where to even begin today...
Went to rehab. for myself and found out that instead of improving, I am actually going in the other direction....I do not know how this can be, but it is. My reflexes are very hyper-reflexive in my lower extremities, yet my right food has no reflex at all...I am literally one step away from clonus...I do not understand any of this, I just repeat what I have been told. I got my test results from Mass Gen. Hospital and one test showed my brain "showed some swelling"...also last week when I was in the ER, evidently my EKG showed Tachycardia and also they questioned "acute cardiac ischemia" and so therefore it was listed as an ABnormal EKG....OK....so this would explain why everyone was freaking out, and why I was not feeling well....well one of the reasons.
Also the pain I have in my stomach is I have a hiatal hernia, delayed gastric emptying, and severe reflux even on anti reflux meds...plus I have some funky structural issues going on in my esophogas...
I am going on friday for brace clinic, and wheelchair clinic. The PT girl feels I will need some upper body support as my midline muscles are losing strength and I need to sit supported with either my arms doing it by leaning forward, or by my back being supported sitting back. Problem with this will ultimately be seeing if Insurance will do this. I am stuck with out the chair and would like to get some independance back. It may be WEEKS before I get something if insurance will do it. We cant even order it until ins. gets the papers, decides if it is needed, then hashes it out with PT...o this seems so much fun..meanwhile Rod is missing a LOT of work while he pushes me around. But I cant do this alone and would like something I can manuever. I did find out I am not a candidate for a scooter, as I do not have the balance I would need for it. I am still getting fluids a few times each week. This helps the headaches, but other tests indicate still having kidney trouble, and autonomic dysfunction.

On to another kid because I am depressing myself!

Lianna has her new pair of AFO's. She loves them. She can run and balance, and she is so happy to have no pain using them. Dr Webster had her cast made into a cast to be used with velcro for night time use and when she feels the need for more support. She is so happy to just finally be without pain. It is great to see her feeling better.

Tim is hacking away sick! He got what Kris had but he isnt nearly as sick as Kris was. He has had a fever and he is really doing well with fighting this on his own. He sounds horrible but at least it isnt as bad as it could have been. Trust me, he is not a good patient at home...he is DRIVING us crazy with "mom.....mom.....dad.....dad...." I cant wait till he is back to being normal!

Kris is getting better but still coughing, but boy does he look better!!!
Josh has been walking around wearing a mask!!!
Reilly is struggling to fight this off still...I hope he does!!

Been a very stressful week and looking forward to having some relief.
Some prayer requests...
*pray for wheelchair to be covered by insurance!
*pray for the addition which is set to begin beginning of the week!!
*pray for the kids health, that it will continue to improve and no one else gets it.
*pray that Drs can do some creative help!!
*pray for my friends who I just love so much, who deal with this disease. They need support, kindness and love, but most of all acceptance; As do we all.
*pray for Rod as he is struggling emotionally right now. He has been strong, working crazy hours in order to get his work done. pray that he will find peace somehow...pray I can get the help needed so he can work like a normal dad/husband.
*Pray he will be given emotional/spiritual support and male friends will come into his life so he HAS a life besides taking care of us all here.

That is it for today. I will update after fridays BIG appts with Spaulding Rehab. to see what we are going to do next.

Saturday, March 25, 2006 11:52 PM CST

Quick update on my stroke...
My right side is very weak and I have tremors in my arm and leg. I am hyperreflexive in my knee joints but I have lost all reflex in my right foot. I feel intense cold feelings in my right side that are completely neurological and may never go away..my foot has lost muscle tone and
now turns in while I stand, sit or walk. I need a brace on my leg, in order to turn my foot back. They said this will happen, they feel, as long as I use the brace. I am using my hip muscles to "fire" my leg or in other words my hip is driving my leg, not my leg. Also, my calf muscle and my
quad. muscle are becoming quite tight and not working. My legs burn from use and are cramping badly. my foot feels like jello, and yet tight. Both legs will tremor if I am up too long. This is getting worse daily..
My hand is struggling with hand eye things still...and it is not fast either.
My kidneys are not doing their job lately and they are starting to malfunction just like Tim's have. I am concentrating the urine. I am on IV fluid a few times a week and this is not doing alot, but it works for a day.
The theory is I will need fluids daily...yes, that means a central line and I am not real accepting of this...My stomach will let some food in, certain things I can no longer swallow, but my stomach is not emptying those things fast enough in to the digestive trac, so there for I am the fattest malnourished person u know. so right now, I am told Rest. rest will help heal the brain along with therapy....I am supposed to use a wheelchair because my stamina is shot. I am afraid to do this for fear it means I will never leave the wheelchair. when I have used the chair, if someone approaches me I fall apart anyway..real fun person to be around trust me!
I can drive but not a lot quite yet. I can get myself to a place just cant get in that place.... not with out assistance of a push. If I do walk around I am trashed with in a few short distances. PT says this may or may not
improve. The feeling is it wont improve the stamina but it will improve my acceptance of what I am able to do...(great!) I am scheduled for OT and Speech Therapy evals next week as I struggle with my right arm and hand, and when I move around much, my speech slows a lot and becomes hard for me. My autonomic system is pretty much trashed
right now. Hoping this will respond to fluids although so far it has not. Still having tachycardia, but my respirations keep falling into the 5-6 range...and this is simply not acceptable to most of the Dr.s. I am also showing signs of adrenal insuficiency...and most of my lab works supports that. They take blood 3x a week...trust me they are seeing things getting worse...
The concensus right now is I have hit a spiral downward that is not slowing down and has sent most of my systems into a crash.
I have only one real prayer request and its not for me....pray for Rod...he really needs it. the kids do too, but Rod is dying inside and I see it...please lift him up.
thanks..

now for Kris...he truly has the flu. He has lost about 8 pounds this week from this flu. He had a 104 temp and major bleeds while he was at his sickest....he is now getting better slowly but this hit him harder than anything I have ever seen hit him!!! hoping we have turned a corner and he isnt going to have any residuals...

Lianna gets her cast of monday and gets her new AFO's for when she gets weak muscles again...her breathing has improved even if it is not optimal..it is better.

Tim is feeling like he is geting sick...this is not good...so please pray for him!

We could really use some prayers as we look for some
guidance...without going into details, the kids have expressed to us the desire to be involved in a church more, so please pray that we can actually be a part of one that will openly accept the limitations of the family, and will not be overwhelmed or burdened by us and our need for
prayer. Right now things (not us personally) are in a bad place and we couldnt even get the fact I had a serious stroke onto a prayer chain..even though Rod asked the day it happened. ...so we need your prayers, we have no one
else...
on a side note, family is turning around and some are seeing the truth in medical stuff...which is nice in some ways. But there are still family members who still ignore out of ignorance.....

A good friend sent this to me....
A Maya Angelou quote: "I can be changed by what happens to me but I cannot be reduced by it." THANKS KRISTIE!

please pray this affects my entire life..

Please keep Heidi C in your thoughts and prayers.....I love this person so much and worry about her every day...she is a really really good friend and it doesnt matter what condition she is in, I simply love her
because her spirit is so strong. She really is hurting right now, not just physically. I really wish the best for her and I hope she knows I care as much as I do....
to every one else..thanks for reading this long book...it takes me a long time to write it, but it is a weeks update....sorry!! Please IGNORE the typos, I am too tired to try to find them....enjoy the lapse in language arts this time....

PLEASE SIGN THE GUEST BOOK!!!

Monday, March 20, 2006 9:59 PM CST

On sunday afternoon while I was alone, I had another episode that today is being decided if I had a seizure of if this was a stroke.
I spent TOO MANY hours in the Emergency room at New England Medical Center and finally got home at 9:40 this evening.
I had 3 liters of fluid pumped in, blood pressure is finally stable (it had gone up to 140/103) and my heart rate was at 156 per minute, but is now back to stable. My blood sugar was very low so I was given a shot of 25% glucose in my IV to raise it up.
My only risidual issue is I am not able to keep my respirations up. I kept alarming this afternoon while I was having yet another episode right in front of the ER docs. They got Neuro up to see me ASAP and yes, they agree that "something happened", and it looks like a pattern.
I have MULTIPLE appointments coming up, yet I am unable to really drive. I have terrible tremors. Still waiting on rehab...they sent the papers over but no one from the rehab has called me to set it up. so this a problem now.
NOW, I am really struggling to use either leg and feel very shaky.
Meanwhile at home...
Lianna is in a cast due to her muscle weakness and joint instability. Once the cast comes off, the joint will be tighter for her, and she will be put in her new AFO's...
Tim seems to be doing ok except some minor GI issues and his gtube problems that continue.
Kris is back to sleeping about 18/20 hours per day...this indicates he is either having more seizures OR he is going through a growth spurt and he needs the extra sleep..either way, I am not going to worry about it.
Right now we have some serious prayer requests...
pray this addition just gets begun. I have never felt like I needed something more than this. I am struggling in my own house and this is something that is definitely going to help.
Pray that needs get met for the kids and us. I am really struggling to be a mom right now and realize how much I am relying on josh to take care of all of us. This is not only unfair to him, but it makes it difficult as well.
Pray for Rod. He is trying so hard to keep it together but I can see it in his eyes. He is struggling. This is all too much for him to handle alone and I need to get back to baseline for him and for the kids. Pray for his job, and his energy to keep up for his Job.
Pray for the raising of awareness and funds for the service dog. We have met 3500.00 of 6500.00 through donations and through one promise of a small grant!! we only have a little to go and we are seeing progress. If all goes well, I will hopefully be getting the new addition to our life in may. This is HUGE for us as I will be able to do more with a new chair, and a service dog. I know I have lost a lot but I will get some back with these things in place.

Sorry for the book update. Once again it took me 2 hours to get this going and completed. I am making progress!!! I never said I was speeding! I said P R O G R E S S!!!

Till the next time I have hours to sit and type....

Wednesday, March 15, 2006 9:25 PM CST

quick update...

TODAY IS JOSHUA'S 19th BIRTHDAY!!!!

Today I found out I am going to be going to spaulding Rehab hospital in Boston. I am not getting better, I am regressing in some areas. I am now losing reflexes in my right leg. It is turning in as I walk. I am also having pulmonary problems from weak muscles. Eating problems from low muscle tone in my throat. Memory issues remain and are getting very annoying. I have low muscle tone in trunk support and If I am not sitting in a place, supported, I tend to fall over or sway. Tremors are getting worse in my right side. My blood pressure and heart rate are not responding well. I go very very high and then I crash. My autonomic system is really a problem right now. I have now also begun to show kidney dysfunction as well. From what we were told this week, I am in bad shape...looking a lot like tim did. Dr Korson is worried, and in his words has never seen such autonomic dysfunction..so severe and react so quickly. Blood pressure went from 117/78 laying down, to sitting up and not getting a blood pressure, then finally got one...then stood up and lost my BP again and after 10 minutes finally responded with a 60/40 BP...yet my heart rate is in the 150's. I am freezing cold if I move, and get very hot if I sit still. It is a real mess and after todays discussion with neuro, it is a real possibility that I will not recover much usage. they are hoping, but told me to realize this is progression of the disease and it may respond to some PT/OT/speech therapy, but to be realistic and realize it is a long shot...but it will help with further loss they hope. I have to believe this.
when I get my dates for rehab and when things change I will update more....gee maybe I should change the page's title from "kids" to simply "family"....
please, if you read the updates, sign the guestbook...it is encouraging when we see who visits and get notes.

Friday, March 10, 2006 8:43 PM CST

Been a rather difficult week....
First, this will not be a super long email as I am still having some trouble with typing too much. This will take forever!!

Tim still is losing some weight which is a good thing for the clothing and the scale, but it is also meaning he is not supporting his body completely. We will wait this out a couple of weeks and see if this will change any. His seizures seem to be better controlled. We are still waiting on blood test results.

Lianna is STILL on steroids for this asthma. She is packing on the pounds!! the prednisone has been in her body for 3 weeks now and she has another week on it. Her Peak Flow numbers are still not high enough, so when she comes off she will be on inhaled steroids and another inhaler as well as pills for asthma. Weird!! and not so fun. She is also having a lot of leg pains.

The stroke I had 2 weeks ago has left me with "functional damage". That is the official word. I have also been warned about viral infections and what they can and will do to me. So I need to be very careful. My right side remains very weak. Walking is next to impossible beyond the house. I have tremors and a lot of neurological mis-cues. The Drs have come to some conclusions to "help" me, but that will involve assistive technology. No I am not happy with that fact, and I am still rather frustrated by it. Meanwhile we are going to name the chair, that I get soon. Maybe something stupid, or normal, but may as well name it if I have to use it. If things do not improve they may force me into rehab, but I have asked to be home. I do not want to leave. I am still unable to eat much for solids, but even that is suspected to be neuro related. They also feel the muscles are not working right in my esophagus. Muscle weakness is real with me right now, and this is really not a good sign. Tests are being set up to see what can be done.

The addition is still in the waiting process. The town gave us the deconstruction permit and in about 10 days we will have the construction permit, once the septic system gets done. RED TAPE!
So once the addition is done I will have things totally accessible. God has been amazing with the timing on things, so I know things will be fine. Even if I kick and scream about having these issues with my body and Tim's, I know they must be for a reason.

I, once again, want to say Thank you to all my friends who have come to my aid via phone or cards. If it wasnt for our friends around the country we wouldn't have been able to fight this disease this long. My homeschool friends are the BIGGEST support to my life and my kids, My NEMC friends are the best sources for info and ears. Heidi, the tears and the giggles are special....Liz, my chica te amor! And to FAR away friends...glad you are in our lives again!! They say blood is thicker than water....guess what, WE DO NOT say that, as we have had so many amazing friends touch our lives and have become our family. Thank you all.
Now this has been since 6 pm I began...it is now 10. I think I am done now. I will update sometime next week. It will be a long week.
PLEASE sign the guestbook...we all look forward to checking it!!

Friday, March 3, 2006 12:14 AM CST

quick update
Tim is not absorbing the protein still and now the thoughts are he is unable to support himself nutritionally. So the feeling is he will be back on a TPN soon. We are waiting to get a 2nd opinion on this.

Lianna is still on massive doses of prednisone for her breathing.

I had a stroke last weekend that has left me with full right sided weakness and some speech problems. I struggle to find words, but more importantly the right side of my body is not functioning well. I cant sign my name or grab things, walking is difficult, and I am really weak.

I will try tp update more about things here in the next week.

Thursday, February 23, 2006 9:44 PM CST

FRIDAY UPDATE:
Tim does not have congestive heart failure. In fact they do not know where the fluid is going. The swelling is down but he is also now starting to shown signs of dehydration, even though he still is puffy. This is a battle between specialties now. His labs still are low low, and his outputs and inputs do not match. I dont care what they figure out now, I am just so grateful his heart is not in failure. That was music to my ears!!
We will hear more next week based on his labs, and seeing 2 other Drs.





Well I now know why I am so tired and so exhausted feeling. it seems I have had another stroke.....
this one was weird. I knew something was really up and I knew when I tried to travel it was hard to stay awake for too long, and I had to stop to rest. I would not have changed what I did, but it was very hard and unusual for me to feel like this and have it be so hard.
I have complete right sided weakness but not like what people would think, I am walking and doing things but dropping my foot and also unable to have powerin my right side. It is really weaker than the left, and my hand is numb but usable...I failed my neuro exam again today. I have definite problems and from what we know I am setting myself up for "the big one" and was warned strongly! so I will work on trying to be good. it is not easy but I have some things I need to think about and work on. I am having numbness again and having word problems plus other little things. PLUS I am totally unable to eat solid food. I am doing all liquids and this is probably a neurological thing right now, and some GI. But we need to look into why. I have follow up appts in April.
Also please pray. There are a lot of people who feel right now that Tim is either having congestive heart failure or some other vascular problem involving the heart and fluids. This is very serious and Tim is really struggling. He is a lot like me and wont let on how sick he really is, but this is something he is having a hard time hiding right now. He is sleeping a lot, and he is struggling with walking and talking too much. The seizures are coming again and we have had to use valium to settle them down. We will continue to use this as needed. we have MANY appts in the immediate future for him.
Lianna is still struggling with the asthma and the congestion. she will be on steroids for at least 8 more days. When ever we start prednisone with her it ends up being a whole month on this stuff...with relapses too....so this is not going to be fun.... and Reilly is coughing and vomiting from the coughing.
Kris' neuro exam today showed him as pretty much doing well with the seizure and he has had no more. We are going to keep things going like they have been, and things will go well.
So please pray for us. We really really need it. We actually got home at 9:40 tonight from these appts and it was a eye opening ride home.....I suddenly do not feel guilty being so tired any more. So much exhaustion lately. I have not been able to do much for myself. Feeling quite guilty over it as well. now at least I knw feeling like this has been for a reason. I do not like it, but at least I understand why.
with tims situation, we will be updating when we get info...

Saturday February 18, 2006

SUNDAY February 19,2006

One new update! Kris was taken to the ER tonight as he sliced his hand trying to move away from a falling knife. He required an immediate dose of AMICAR and will be on it for the next week due to his bleeding disorder, and he is now the proud owner of GLUE on two fingers and a brace to keep them from bending and opening up the glue. Life in our house is just so nuts! Kris was very lucky as he was just "mm" away from slicing the tendon in his fingers. It was a very DEEP cut but PTL it was an extremely sharp 9 inch blade...it was a clean cut, no ragged edge and it hopefully will leave no lasting issues.



SATURDAY:
We spoke with the Drs late yesterday and the plan seems to be this...
We will be cutting down on Tims fluids to 3 liters a day to see if we can control the swelling in his legs. We also are hoping and praying with all our might this is the reason for Low albumin and pre albumin. Problem is, his urine is really concentrated and his BUN and Creatinine are low as well showing he is dehydrated...so no one knows if he is being overloaded and causing things to shut down, and water down the proteins or if he really has a serious problem with absorbtion of proteins. The easy fix is lowering the fluids to see if in a weeks time this will help correct something. If not we have a much more serious issue at hand. 3 Drs are handling this and not all of them agree with the other on how to deal with this. The other problem is Tims Thyroid is slowing down as well. His HCT is at 30 and his red blood count is very low showing the iron is once again not binding, and his depakote levels are extremely low again.. Those are not fluid related at all. SOMETHING is going on in Tims body and we just have to hope and pray he will stay "healthy" while we try to fix all the issues. Biggest problem for us is the seizures and stroke. When he is sick, we see seizures. If he had a metabolic stroke like people are saying, we are seriously putting him at risk if we do not stabilize these issues.
As for our other appts this week, we saw the Physical medicine Dr who basically said what we have for leg usage right now will be all we get, and the nerves are dead in parts of his leg. He STRONGLY encouraged us to seek a lawyer and begin pressing for the Dr who screwed up, to take responsibility. Tim lost use of 25 percent of his leg and it will not get better as it's nerves are dead now. He said he fought by phone and was rejected by this Dr on how to treat, and The Dr never did any tests until 6 days post pain...every Dr we have seen since then has said waiting 24 hours was too long, 6 days is malpractice. This is a hard choce but one the Drs are insisting needs to be begun. My theory...nothing will change what we have now...so why bother.
On another note, I got my appointment with GI on April 6. I have already lost weight from not being able to eat, but I am holding my own with a pure liquid diet. I almost feel better this way. I dont feel the full feeling, I am not refluxing and I am not having pain. I am not even choking on it...PTL. I tried to eat pasta last night figuring it would slide down...but it actually was uncomfortable. I ate nacho chips with some cheese, and I chewed them so well that I didnt choke! but I will not do that very often as it really did come back to haunt me!
I will keep everyone updated with Tim and Kris. As soon as mark Korson comes back from vacation we will get more answers I am sure...
Thank you for reading and praying for us. That is the only thing getting me through hour by hour....or should I say minute by minute. Please sign the guest book so I know who to tell the kids is stopping by. Thank you!!!





Friday, February 17, 2006 7:14 AM CST



very quick update, I will do a better one later this afternoon when I speak to the Drs again, and have a clearer understanding of the problems...HOPEFULLY they will have a clearer understanding!
Tim has been sleeping about 16-18 hours a day and now he is swelling up in his legs. His protein levels are droping as his his thyroid level. His Urine is concentrating more, and his blood pressure is pretty low. His Hct is low and he is anemic STILL.
Yesterday we saw stroke clinic and he has a lesion on his brain from July. So there is documented proof of a stroke. His depakote levels are once again low, and now GI is worried he is not absorbing his proteins or liquid meds. So we wonder what plan we should use to try and control some of this.
We are waiting to hear what we should do. I asked about dropping his fluids and seeing if the puffiness will go away. Dr R said ok, but only by 10I was thinking like 30-40.he said NO pretty emphatically. Tims speech is more rapid and harder to understand, and then he becomes slower and slurred...he is flipping between the two.
Kris is now on meds for fluid retention..they need him to retain fluid! he is really having trouble with fluids.
I am realy still not well. I am unable to eat any food. I can only do liquids. I am choking far too much. I am scheduling appts for me as I need to see what is going on.
Meanwhile I am still trying to take a mental vacation. I honestly cannot function right now. It is pretty bad...probably worse than I have ever been (without having had a stroke)
As soon as I hear fromt he Drs I will try to update more on Tim. This looks to be pretty bad, and would like for all of you to just pray it looks bad and it really isnt.
Donna

PS..Laurie and Christina, I havent forgotten you! I just am really out of it and have been so busy with this that I havent had time to call. Please forgive me!!!!!

Friday, February 10, 2006 4:46 PM CST

This has been a really hard couple of days and I am stressed out to the max. If one more thing goes wrong or someone says the wrong thing it truly will be the straw that broke the camels back. I honestly am at my wits end.

We now have viral infections running through the house.
Kris is refusing treatment for himself.
Tim has another abscess on his tube. and has ben having tremndous amount of seizures.
Josh is now in a cast and will be for 6 weeks plus 6 more of therapy with a brace.
Reilly is cranky and Lianna has a major rash all over her upper body and no one knows why...her lactic acid levels are high and her CPK is high, her sed rate is high and her temp is very low....
The Grant people for the addition are sending mixed signals as to how things need to be done. they want us to get plans and get accurate quotes AND get permits...without paying anything out....finally a few contractors helped us out and told them that cant happen...and THEY chose the contractor! so I have no idea why they didnt know that information if they had spoken with people anyway....
I have family arguing over PCA hours....I have very selfish people who insist on the next person not getting "their" hours, so that the other person can get more hours and more money....UGH.
I have 2 kids kids having active seizures and one kid just in pain....and yet another who is refusing to allow us to intervene in his health. He prefers to just let himself go. He has been told by his "friends" via email that he is strange and retarded, and WORSE. He is buying gifts for people to try to win friendships. He does this then he gets trashed via email and I have had it. I am starting to wonder how much I should just intervene.....this is wrong. I think this is why he wont let us intervene in his health.
I am worried about everything and there is nothing I can do. My blood pressure is very high and my blood sugars were doing well, but after today issues, have been high due to stress. Sitting and crying will produce nothing but a headache and swollen eyes but at some point it may help!
This has been a very long week and very stressful. These are the days I wonder how much more we can handle as a family.....this is just TOO much. Like I have told the kids..Mom needs a mental vacation, please do not expect me to be concious for a few days.

Wednesday, February 8, 2006 6:54 PM CST

Ok this should be short and sweet...
I had my appt with nutrition to discuss my rising blood sugars. Well when she saw the numbers she nearly had a fit! they go from 48-210. SO the plan is a funky diet. Now...in order to get the diet for me and the diet for the kids all on the same page, she was kind enough to plug info into a shopping list buddy....after seeing 1 page come printing out I realized I am doomed...most people get LISTS..I get one small sheet!
I went and did the shopping for foods that will keep us all healthy especially me....my food budget of $55 a week...yes it really is $55, just rose DRAMATICALLY! I will admit that I was shell shocked. I cannot shop like this forever, and my kids will cry with no "real food"...but we need to do this and it will be a challenge. I have eaten like this since saturday and it seems to be helping me a lot. I feel no sugar swings, so that is a positive.
I had a GTT done today and reacted very bad to it...so now the diet has been tweaked even more. I have to eat every 3 hour day AND NIGHT. even a cracker with cheese will do. This is funny...I am eating more but I lost 2 pounds..go figure.
Tim had another seizure last night and is really struggling to walk stable today.
I am also trying to decide if I should try to go back to school (from home) to get some classes done and see if I can help out at home some with finances. I feel guilty not helping out more than I do. Also I would like to try and stretch my brain a bit if possible! I have been given a few opportunities to do some things "off the record" for some people...with a degree I could do this same thing and get paid for it.
I do need to get in touch with insurance and see what they will cover for a chair for me. Thinking I would do better with one like Tim has as opposed to a scooter which is more bulky. I have a lead on a scholarship for a service dog. I am just working on saving up for the application fee....this is a major thing for me as it will be the best help ever.
other than all of this...we are just trying to keep going along.
many more appts this week so I will update soon.

Sunday, February 5, 2006 9:30 AM CST

Well it seems we have made it through another series of Tims seizures. Past couple of days have been rather easy and he has been more like himself. I hate the times when he is "off" so to speak. It is hard to do anything but focus on him and I miss spending time just being a mom to the rest of them. He also has been falling alot too. He loses balance and his leg that was injured from the bleed in Indiana, seems to be getting weaker even though he is walking more.
Lianna had her MDA appt. She is getting a brace for her ankle. Its not a AFO, but some other type of brace that goes up the back of her leg to steady it. He noted she is struggling with balance as she cannot squat and hold balance, on one foot she has no balance and he said she is flat footed as well, so she should have MORE balance from that. He said PT is not a option as she is my active child, which results in pain, but she gets all the movement she needs and this is something PT can't change.
Kris is doing well right now. pretty tired fromt he trip but at least now is not sick.
Josh is in a lot of pain with his wrist now. The nerve block wore off and he now knows they operated on his wrist! His hand is very swollen but all in all he is dealing well with it. He is bored doing nothing though..he said he cant wait to start doing things.
Reilly has a dentist appt this week. He broke off the front teeth about september ( in a swing accident ) and the dentist capped them. the caps fell off and the teeth underneath are decaying. We have tried to get an appt with the hospital dentist group as he needs major work done and we felt it was safer in the hospital....so he goes tuesday. Reilly wants them pulled out so the tooth fairy can come. So do I as I feel it is safer with his immune issues than to just try and fix them again. They are baby teeth...we get more in a bit!! So hoping this visit goes well.
I had my EEG. It was not easy. I got violently sick from being sleep deprived. When I got there I had to go through the strobe lights...ugh I was so sick! I cannot do strobe lights when I am wide awake never mind when I am sleep deprived. I slept for about an hour and it did revive me somewhat. My results come back on Feb 23. I hope they are ok....I rather like my license!!!!!!
I am breaking down a bit...I have come to the conclusion I NEED to get a electric chair or scooter. I just cannot do the distances at all. I am wiped out. I am getting excited about the addition as I will be able to do my own laundry again as it will be on the main floor. I can get to the playroom and play with lianna, and reilly...I can even do school easier. Everything will be on one floor. I feel inadequate as a mom lately as I cannot go down the stairs but once...other wise I am done. I dont let people see the fatigue but it is there. I hide it well on some days.
I cant say too much about the gift giver, because if we do someone else in our family will get mad! LOL...but we got our anniversary gift this week (actually ysesterday!) This is a gift for the new addition, and something for the whole family...a tv! We have had a 20 inch tv in our living room for years. we all huddled around it and watched everything. I love the tv, kids use to tease me and say people were midgets. This is a wide screen tv that we have now. I dont like it as my Living room is still small so I feel like when I sit to watch it, I am in the persons face! I mean I love the TV but lets face it..its a TV. Kids are going crazy. This is technically a "anniversary-house building-chritsmas and all of next years" gift....thats what we know. I just wanted to share....it was one of the nice things that went on this week.
This next week is as crazy as last. I have 4 days of appts in boston. Some even at 7 am...ugh. I need to start making more appts for me and making arrangements for a scooter/chair thing. I cant wait for the addition to be done so I can use in in the house...so much easier and I am envisioning the things I will be able to do with the kids.....
Ok enough of a book for now...

Wednesday, February 1, 2006 7:13 PM CST

we had an eye opening appt today.
Tim's brain issues are real brain damage and what we have been seeing is really seizure activity as the brain is damaged in this area. My comment to the doctor was I wished she had said "behavior" as we can correct and change it...albeit hard....this is something we cannot change. the only thing that has worked for a week now is sedating him with valium, and when we talked today we were told that is our only option for now and that he needs to go into rehab. He will probably never be able to live alone as he cannot control when he will seize....this is not what I wanted to hear. The hard part is he is not in control and can be so behavioraly miserable. I am frustrated by all of this and now to hear there is no more they can do, really bothers me....We also saw a Dr we used to have, in the hallway by the surgery dept. his name is Dr Flores. I just adore this man. I mean I ADORE him...he asked how the kids all were and I gave him a "brief" idea. He just hugged me and said if I ever need him to please call....how sweet was that?? Meanwhile we have to go to the stroke clinic and see if we can get him into a rehab setting and pray that this will help us and help tim. He has lost a lot of skills....it is hard on him too....

Josh had surgery today..he is doing fine now. He had his wrist opened up and they cleaned the bones off and reattached the ligaments. He seems to have some pain already even with a nerve block, but he is doing great otherwise. The surgery lasted 2 hours, and he was out at almost 4 pm...he left the hospital at 5 pm and is now getting ready to eat a pepperoni pizza!!!! So yup he is feeling ok.
This is his right arm so he wont be doing much for me as its his predominant hand...o well...
the recovery time will now be 16 weeks, including 9 weeks of PT....glad this is done!
Lianna is being seen at the MDA clinic as she is having increaing pains in her legs. I hate seeing her cry after playing and she is maxed out on the neurontin. The winter makes it worse, but she is really sore. She also keeps twisting her ankle, the one she broke and it causes even more pain...I think it is time to re cast it, and let it heal again. we have done this 2x already....
Reilly has a 102 temp with a bad cough and congestion. He is struggling, but holding his own so far....by friday if things do not improve, we will take him to be looked at....
Tomorrow is MY EEG, and Kris sees Neurology, I have nutrition appt to see if we can regulate my blood sugars that seem to be on the rise no matter what I do...and then lianna sees the mda clinic...its a long day..even longer tonight as I CANNOT sleep until tomorrow night. They want me sleep deprived...this will be fun...can anyone say STROKE?? If I get overtired or sick..I stroke...so I am preparing this time....(if someone really can).
well that has been our first few days home....
update later with answers from our appts...

Sunday, January 29, 2006 11:00 AM CST

NEW PHOTOS UPDATED TODAY!!!


we spent 9 days in a warm environment..enough said! it was great
we went to Disney parks, Disney quest and universal studios. Reilly was able to ride on all the rides he wanted to. He dressed up as Spiderman and spent about an hour being Spiderman with Spiderman and got pictures and Reilly thought it was fantastic..so much so, that he has changed his name. His name is Reilly Parker, and now he is calling himself Reilly Peter Parker..."peter Parker" is Spiderman's name!! LOL and people actually took photos of him around the park!!! Kris rode the Hulk coaster about 7 times, Rod did it once and loved it. If it twisted around spun or flipped, Kris did it. Kid is a maniac.
He literally rode rockin rollercoaster at MGM and then got off and got right back on...all day long Saturday, then got Josh to do it too...
Every restaurant we went to did something special for Tim. We went to "Boma" and African buffet, 50's Prime Time cafe, Chef Mickey's, Japan at Epcot, Canada at Epcot, The Land at Epcot, and the food was amazing at all the places.
Kids pin traded, got some souveniers and simply had fun.
We took a boat ride into the lake at epcot and saw the illuminations fireworks show from the boat at night.that was supposed to be our anniversary gift but they all came along....o well.
we were given 3 rooms at the animal kingdom lodge and it was fun to be able to spread out and each room had a savannah view so we saw all sorts of wild animals. I think my favorite was the graceful giraffe. MAW did a good job in putting us there and doing all of this for us... I would recommend it to anyone! The pool at animal kingdom lodge had a waterslide into it and we did that one day when we needed rest and down time.
I bought a scrapbook and tons of paper stickers and extras for it. I am going to be getting one made!!! A friend has offered to do this for us.
This was well needed as much of the time someone was either throwing up or sore. we had tummy aches, tubie aches, abscess on g tube, nausea, vomiting, headaches, and sneezing a lot. Tim had a seizure, Kris seemed good. Reilly was great and so was lianna except for a couple of days with tummy issues... Josh and Tim were always complaining of being sick. But they managed to still do everything between being sick. I ended up needing a scooter as I just could not do it. Amazing how much energy has been sapped out of us in the past couple of years. A few years ago I would have been up at 7 and down by midnight ready to go again the next morning doing it all!!! but I saw a lot of exhaustion and needing to rest. We were in bed by 9 and up at 9...it was short days, some days simply resting days, and it was really nice to be able to have the extra days in order to rest and remain cognitively rested. Although the scooter was desperately needed. It saved me from suffereing worse. worse part of the entire thing was the fact my 73 yr old mother did far better than ME...ugh how miserable that felt! LOL..
we got home at 11 last night, but I got up at 11 today!! I am really wiped out. we all are. Now I have to pack my house and put away toys and clothes. I hate this part of vacation! LOL
glad to be home but boy do I miss Disney.....it finally made the kids feel like they were not freaks. instead they felt normal for a change. THAT is the BEST thing about Make a Wish!
We have ton of appointments this month. lots of long scary ones....involving everyone.
will update more later.

Saturday, January 28, 2006 7:46 AM CST

ok it has been a very long and exhausting week BUT we NEEDED IT!
2 kids are on antibiotics and 2 other are still sneezing. I have begun to get all filled up too but it was worth it.
We did alot of prak hopping and a lot of walking but we also did plenty of resting. We slept everyday to well after 9 and went to bed early too. So yes we did get the rest we needed.
Tim managed to have a seizure this week, nothing we even worried about as it was his typical one.
We have our typical last day blues now!! The kids are sad they have to go back to the cold...so is mom!
The Animal Kingdom lodge was awesome, animals were so close to our room and it was quiet and peaceful looking and feeling. Something we would like to bring home with us.
Tim has been very difficult this trip. His mindset was off and he was simply hard to deal with. This is exactly how he was last summer when he had many issues at once. I am assuming the seizure and the rest are all related but to say the least it has not beeen fun with him most times.
We are going to MGM today before we fly out. We have done so much and I will be posting photos as soon as I get a chance to do it. In a couple of days I will have a better chance! We have a full month of appointments. So we are going to be very busy.
wel of to the parks now...last chance!!

Wednesday, January 25, 2006 10:30 PM CST

Josh was sick, Kris is very sick and Tim decided to not be odd man out and he is now really sick too.
Reilly is just sneezing!!
Tim actually decided to throw up at a really nice restaraunt, and then came back and asked to eat...I kid you all not! it was gross....
We have had a couple of really fun days. Yeterday we went to Islands of adventure and Reilly got to dress up as spiderman, and he got to hang out with all the marvel comic heros. He sat and played with spiderman for a few minutes, got pictures and even learned some new spidey moves. He got to go on the spiderman ride too. He is so happy that he is able to go on rides. This kid is finally tall enough to do the things he likes. He is not freaked out by any rollercoaster or any scary rides. He loves them all.
Kris and Rod rode the hulk rollercoaster. Weird people!!!!
If you want to see it go to Islands of adventure at universal studios.com and Look for the hulk coaster...and my huby was waving like a fool having the time of his life. Kris was happy too. He went on it 2x.
We had a chef at Boma, make a special meal for us tonight. It is a buffet, but the chef found out Tim was a wish kid and we were given a special made African meal...this was amazing to see. I will post pictures soon I promise!!! I just have to find time to do it.
Today Lianna and Reilly got their haircut at magic kingdom. They got fairy dust..oh sorry its PIXIE dust! and mickey heads painted on their head.
After supper we took a pontoon boat ride into epcot's water way, and we got to watch the illuminations show from the boat. That was amazing. abslutely spectacular.
Well, with 3 kids sick, it has been fun none the less. Dr R has been sweet to call in meds for us. and when we get home we will begin our crazy life of Dr visits.
I will post before we leave florida!!

Monday, January 23, 2006 8:15 PM CST

Just a quick update on Tim. We have an abscess on his gtube site and it is draining blood and pus. This is not only gross but very painful for him. So pray for this little guy...if it continues and stops the draining we are in trouble! Dr Rodriguez was unable to come for the trip...so we are without any medical help. Before anyone asks WHY?? he couldnt come, he asked that we please not say. It simply was an emergency. and we understand. This guy and his wife are so sweet, they asked Tim if he would like to come and go out witht hem to six flags new england when it opens. Or some other BIG amusement park. He can even stay with them for the night. I thought that was very sweet. The best part is we have his EARS here, and we are taking pictures of things and making sure his ears are int he picture. Later on we will photo shopp them into place with his photo!!! so it will be as if he was here with us...watch for those pictures!
I managed to get Tim on a rollercoaster for the first time..and now he WONT STOP! He loves them. He thought he would hate them and now he loves them. He seems to enjoy some of the things now. He never liked too many things now he is doing them becasue he knows this may never happen again.
He went to disney quest today and he liked it there. He spent about 7 hours playing game after game. That was his dream.
We have surprise for the kids for wednesday that they are ALL unaware of...we have a boat reserved for us to take us into epcot and see the fireworks right there in the water. This was our anniversary gift and we decided to take the kids along too....how fun huh.
I got to see a giraffe outside my window today..too close for my true comfort but it was beautiful.
Josh, kris and I are having lots of tummy troubles. Mostly pain and general malaise...I am using the scooter now so I have a little more energy. I took the whole day off today with the younger ones and we swam and hung out by a pool. O ya it was 84 degrees today!!! ahhhhh the life.
OH ya, I got a kiss from Mickey! hehehe...I just love mickey. My mother said "someday Donna you WILL grow up and know he is not real"..I said NOPE. Mickey rules! and besides, Mickey is the opposite of sickness and pain...therefore I dont ever want to lose the mickey spirit. and besides, I got my hug and kiss...and I had to see Snow White with Lianna...yuck! She is a whiney little thing. I so much prefer Belle, Jasmine, Esmerelda...now they are spunky little things. Belle is my kinda girl! Lianna likes Cinderella and I said that was ok too as she is the epitome of true woman-hood...but give me Belle anyday. ok enough princess talk....I am just letting all of you know we have had the time of our life even in the face of medical trouble. Tomorrow is universal studios and spiderman...Reilly will be in HEAVEN. He actually met a little boy named William today at the pool. He said hello to him and then proceeded to tell the boy he can be called William but only he bestest friend is called Will!!! so the poor kid just gazed at him. It is funny..he is on the playground and asks the kids "do u speak english?" and when they say SI..he says "YEAH"...he knows some spanish so he thinks Si and yes mean they can speak english...boy he has been bummed out some times! but he has been having a lot of fun.
Ok, until next time...

Saturday, January 21, 2006 9:14 PM CST

Long day at the animal kingdom park!
We entered this AM and Rod walked into a cast member and spoke to her for a few minutes..next thing we knew we were being escorted to the expedition everest ride!!!! It is NOT open yet! only cast members and family can ride the ride while they work out the bugs in it...so Josh, Kris and I were the first to ride the ride!!!!!!!! It was awesome. I love rollercoasters and I didnt care what this ride was like, I just knew I had to do it. It has an 80 foot drop, BACKWARDS, and it goes in both directions. My voice hurt after it, but it was amazing.
Tim has an abscess on his GTube site. It broke and began bleeding and spiling out tons of pus, He almost passed out, but after spending about one hour cleaning it as good as I could, it finally stopped oozing. We have it dry right now and hoping it wont amount to much of anything now....
I have come to realize I am unable to do what I used to do, and it is bothering me tremendously. I cant keep up. I am trying, but I know assistance is what I am needing. SO, I have to break down and do it....ugh
We had a birthday party at the Give Kids the World village. Reilly loved dancing with the kids, and they all enjoyed putt putt there as well. Supper was a celebration of chinese new year so we had that and mexican food at the village.
We have no idea if we should go to GKTW for family fun night, or if we should hang out at AKL for the storytime at the fire pit. it is hard to choose.
My mother, Lianna and I went to epcot and saw 2 countries and the shows there. My dream has always been to go to France, but no one has come up with a way to get there without going over the ocean...so I will watch videos!!! (I hate flying over the ocean!)
well, I have to get meds ready for tomorrow...hopefully we are just sleeping and hanging around doing nothing much. we all need it!! and it was prescribed!!
will update soon!

Friday, January 20, 2006 8:18 PM CST

Hello from Disney!
One note to self moment has already occured!!! DO NOT LET KIDS with SEIZURES and AUTONOMIC dysfunction RIDE MISSION SPACE!
poor Kris is trying to recouperate at this moment! LOL..It was fun though.
We have done a few things and everyone seems to be having a wonderful time. Reilly got to meet all the characters and he has had some fun. He is now 40 inches so he is able to ride ALL the rides...he is thrilled.
So far no major issues, just minor ones.
My feet are done! My legs are swollen, and I am unable to do much more. I think I will be having to bite the bullet and rent a scooter. I just cant do it and realized I am much weaker than I thought.
We have a room at the animal kingdom and we have been watching the animals out our door. It is fun to see the animals. Right now Tim is using night goggles to see the animals tonight from a lookout space.
People have been so amazingly kind. to ALL of us....its as if we are ALL the wish kids.
Well I am off to bed. I am so SORE..long days ahead, thank goodness for rest days between...parents need them!!
I will update as time goes on....Look for photos that I will promise to upload soon...

Wednesday, January 18, 2006 7:35 PM CST

Just a few short hours away from take off.
Today was crazy and busy. Not only did we have horrible weather, but I had to be out of the house at 11 am for doctors. 3 boys had IVIG that took forever to get through, we had to run last minute medication runs. We found out we have no health insurance right now, and we are pretty well stressed to the point where there is not much more we can handle without falling apart! I know the insurance will be fixed soon, but for now we have nothing.
Josh is feeling better although he still looks sort of green. Kris is not right yet. He is so really quiet and it has been since his seizure. He has lost even more weight as of today so I have no idea what the long term plan will be.
Tim is really excited but he keeps saying he is not able to eat. not quite sure why but he has complained for a week that he really hasnt felt well,,,yet he is not sick. I do not get it!
Reilly has not shut up about seeing spiderman. He is all kinds of excited that he is going to see spiderman. he made me pack his spiderman costume so he can look just like him when he sees him....this should be interesting.
Lianna is in tears lately with her legs. Nothing is really helping the pain. we upped her nerve pain meds and hope this kicks in SOON.
I have been very close to having real neuro issues. My word retrieval has been poor and dragging my leg a bit too. Smelling smoke, and it is not there. headaches...been very tired too, but not tired like needing to sleep, just wiped. When I over do things I end up slurring and losing balance. Just not too sure what is in store for me. but I do know I need to rest and I need a break from worrying.
Changing jobs brought our family together, now we just have to plan for all the changes that have come from a job shift.
Disney is happening at the right time. We go tomorrow and leave at 445 am. Then we will get to florida around 10:30am and go to Give Kids the World. From there we will celebrate christmas at the Village and go to the Animal Kingdom lodge for our 9 days. We have a cruise in the epcot lake to watch the fireworks from...PRIVATE! and our favorite Dr is coming to spend time with us. Thank goodness, as I have a feeling we will be needing him.
Well I will update as I get the chance.

MONDAY, January 16, 2006 2:38 PM CST

Tuesday update....
Josh is now throwing up. This is miserable! I am hoping and praying that Lianna does not get this. Tim we can keep hydrated, but Lianna becomes severely dehydrated and fast!! Please pray this doesnt happen again. I am armed with Zofran, but I do not want to use it. I would rather have no throwing up this time we hit florida.
Ugh....here is where the fun begins.



Monday-
I am really stressed out about this trip right now. Trying to figure out a budget and trying to make sure we have all that we need. This is insane.
My headache is worse today than it has been in a while and kids are fighting something off. Please keep us in your prayers for the next couple of weeks as we get prepared and execute this trip.
Also Tim seems to have had another seizure and finally I am learning to control it better. I have found Valium helps settle his body down. this is not the time to be struggling with this right now.....but valium helped.





Friday, January 13, 2006 7:51 PM CST

Ok, I just noticed the date in which I am writing the journal! EEKS Friday the 13th....well, I will ignore it and update all of you.
This week has been tough physically for all of us.
I will go in order of size on this...
I have been having this migraine now for over a month. It has better days, then miserable days. I realize I just have to live with this. I do not think it will go away. Physically I am finding it very hard to get up and down from chairs or floors. I ache all over. My legs feel weak and there are times when I really am not able to do what I need to do as I tip, drag a foot, or simply unstable. This week has been hard from being tired.
Josh has been doing ok so we keep him busy helping take care of the rest of us!
Kris had his EEG and had to be awake for a whole 24 hours. He was exhausted but did very well. The test was done and done well. So now we await results.We had a cardiac visit and kris has shown progression with this. We got word that he needs to increase fluids and take meds with hopes we can avoid a line right now. He is losing weight and seems to be requiring a lot more fluid (ala tim)... He is still tired and he is still showing neuro signs but he is functioning and that is all I will ask for right now!!
Tim is starting to feel sick. This is not good! Please pray this doesnt advance, His MAW is this week coming up.
Now as far as MAW goes....we got the final word on the itinerary and it looks like we are going to be ok! We had to extend it by 2 days in order to give Tim the rest days Dr korson demanded, and also to do Disney Quest. we still will only go a few days to the parks but we now will have days of rest between them in order to stay healthier. We are staying at the Animal Kingdom lodge and will be guests of Give Kids the World. We will be able to travel to the village for meals if we want free meals, but probably wont be able to do it often as it is a long drive back and forth. We found out we will have fridge's in the rooms...a kids dream!!! food in a bed room! So we will have foods for the room. We will be using a 12 passenger van while we are there and Rod is joking we will look like a special ed school driving up with 9 people in it! o well..we will be a happy special ed school! The last thing we have to work on (and it is the important one!) is we have to change the return flight at our own expense as MAW had already done the reservations before they realized they didnt get the wish info correct!! So we are still figuring that out. I am not worried, really just more frazzled by it all and the amount of work this took to get things "just right". The pleasure will be seeing the kids faces light up. Heck MY OWN face light up! I love Disney and the lights and parades....I see mickey and I end up with tears! No I am sorry to say I am not lying on that...the kids laugh about it, but I am proud to still be young at heart ( or are we really that special ed school rod keeps talking about?? hmmm) At any rate, everything the past 4 years has resulted in kids fearing when the next thing will go wrong, or when we will lose something. so this is important to be wonderful and stress free. 6 days and counting!!!!!
Reilly and Lianna are excited, Reilly keeps asking when the plane is coming to get him.....we have to get a smooth flight ...we do not need him panicking on one! LOL
Also a last piece of info....we found out we will be keeping the COBRA for a while as people have found out we lose all our services if we switch companies. This is not good and something we cannot think about right now. So we will be keeping COBRA for a while. (can any one say tomato soup and mac & cheese?)
We have IVIG next week and lots of little running around jobs to do. If I get a chance I will update before we leave, if not I will while we are gone-complete with photos!
Sorry for the book...there are 7 of us!!

Monday, January 9, 2006 8:24 PM CST

Well somethings are finally looking up in the health dept!
my headaches are starting to get better today. I noticed yesterday when I could barely open my eyes that they are at least sometimes associated with blood sugar. When I took it and it was 48, I knew the reason for my headache. Today my BS is better but I still know the headache is there just not pounding. So improvement is nice. I was able to even run errands today, a novelty!!
Kris is still slightly weak, seems to have taken a lot out of him. He is really weird feeling and he is freaked out about what happened. Plus the fact his body just shut off basically. So he is trying to get back on his feet. We see cardiology on wednesday to find out why he had a bad strip on his EKG. Gee maybe the fact he collapsed with a seizure threw his whole body out of whack. who knows, but hopefuly it is really nothing cardiac! He has come so far in a few years, I cannot go back to the past with him.
Tim is doing well right now. He is tired and is confused still. Has moments when he blanks out and just doesnt quite understand time frames. He blurts out remarks that are not innapropriate but more part of a conversation from a while back or just a random thought he decides to share! It can be quite interesting!! But he is doing much better. He is house mobile for the most part. If we have to do too much walking he really needs the chair. his leg still gives out from no feeling in it yet.
Anyway, we are on the countdown for MAW!!! They have agreed to help make the complete wish a reality for Tim. We do have to work out the details to pay for the flight home. We have to change the date, and that costs to do that. And we now are going to be responsible for the limo home....so we have NINE days to figure this stuff out!! O ya...My headaches are also due to STRESS, I THINK!!
I am nervous about this trip. I wont lie. Nervous as it once again cements the realization that things in my childs life are really bad, and that he actually QUALIFIES for a wish. Ok, not going to think that way.
We are going to go away and try to toss away fear, hospitals, phone calls, financial debt worries, and the rest. We are going to go and truly find a way to relax and be a family. I am bringing Motrin and tylenol and anything I can think of to supress a headache, and we will be fine.
For now we have to get ready to celebrate Rods birthday on Thursday...he will be FORTY! O the things I would love to do!! but I wont...yet. and then we have to get ready to celebrate our TWENTIETH anniversary on the 18th. Amazing as it is, we have plowed through thick and think with each other. Sickness and Health (yes there was SOME). And through it all we have 5 amazing kids who have been far stronger than either one of us. so Bill collectors can call, electricity bill go out of this world, cable service be downsized, and no gifts change hands....its ok. Over half my life has been with him and nothing, I MEAN nothing will make me wish or want for more....I really have had the best.

Thursday, January 5, 2006 7:40 PM CST

What a day!
Kris was talking to Rod and I last night just as normal as could be, and then walked out into our kitchen...at that point he fell like a sack to the floor and suffered what we now know was a generalized seizure. He was still out of it this morning and was hard to wake up..Praise GOD we have an excellent neuro team in place at MGH and Dr Sims was on the phone with me as I tried waking kris up at 11 am. He could not open his eyes for me. I tried to get him alert and he was not really doing well. So after a few minutes Dr Sims said "get him in here I am waiting"...with that, I packed him up and off we went. They have also said that his EKG was slightly off. Supposedly nothing major but something that needs addressing. This also could have factored in to the seizure being like it was.
I dont know how to explain this...but to see your child smiling then drop to the floor unresponsive is scary...VERY scary. He is still not 100% back to normal, but much much better. He still has no remberence of last nights episode..he knows he was walking into the kitchen, and then the next thing he remembers is being on the couch...that was 15 MINUTES! he cannot remember being in the kitchen, falling, talking, or anything for almost 20 minutes. We are now the proud owner of a medication called Diastat.....ugh
Also I should share MAW called this AM and has us booked at the Animal Kingdom lodge. That is totally tims wish of a hotel...he asked for animal kingdom lodge, contemporary or wilderness lodge...so his choice of hotel was granted....
We have looked into a few choices for extending it an extra 2 days (trust me it wont be at the same place! that is insane!!! U see the cost of a room?? dang! I will look at the comfort INN, 39.95! sorry sticker shock hit!)
I spoke to MAW and said that if they could change it we would be very happy and the woman said if she had KNOWN the wish in its fullness she would have done it...but it was now too late. It was the fault of the wish people who came out... I understood, but she did say we can do it on our own that it was ok to do that...so we will. Tim is getting excited finding out that he can go to disney quest after the MAW part of the trip is complete. Tim said "heck I will eat soup for 3 weeks so we can stay 2 extra days"..Hmm...wonder if I should test his will on this!
Well I hope all of our friends are doing well...Please pray for a little girl Christina and her mommy. They are away from home and trying to get answers. Loneliness is not fun especially when the loneliness of this wonderful disease is so hard!
Thank you for the prayers today...
they did help!

THURSDAY JANUARY 5, 2006 7:24 AM CST

UPDATE!!!
Please please if anyone is reading this today, please pray for Kris. He was walking last night in the kitchen and just passed out and hit his head on the ceramic tile floor. He came to very dazed and slurry speech. He said he "fell asleep". It took him a while to really get his bearings back and we have no idea what happened. This could either be cardiac but more than likely nuero related. He has NEVER done this before and I am very concerned...please he is scared and worried...please pray.




FRIDAY DECEMBER 30,2005 8:51 PM CST



Sorry it has been so long since an update.
I have gotten many emails about the fact I havent written! OK, I get it! I will do better!!
It has been a very busy very difficult couple of weeks.
I have had a migraine headache that has been going on for 9 days now. It almost goes away then pounds again. I was told I am completely dehydrated. They even wanted to admit me....like I have time! I have also been having some pretty bad neuro issues lately too. I have been scheduled for an EEG and a F/U with neuro, as they firmly believe I am having seizures. once again...LIKE I HAVE TIME FOR THIS! I realized on christmas eve how weak I am getting. I was unable to stuff stockings or stay up and help Rod. I was a mess. I have no reserves. I am empty physically. Each family event or holiday I realize how much I have lost since the last one. I simply see decline...but am glad I am still here.
Tim had more of his biopsy results come back. He has a severe abnormality in his acylcarnitine levels. That along with the complex 1 (and possible complex 3) defect is really taking its toll on me.
It is nice having Rod home now. I have had a time of adjustment, and things have gone well. I have waited for the phone to ring and have someone send him off to parts unknown! but so far so good...although he was told he will have to travel to Conneticut. Seriously, anything under 3 hours is a day trip! so Ct is nothing! Lianna is loving books everynight, Tim loves video games with dad...kris is just happy and Josh can finally breathe a sigh of relief that he is no longer tha big man of the house!!
Our nurse quit so I am back to doing it all....her reason was "I feel I am better as a friend to your family, than I am a nurse...I got too close to your family"..wow.
I simply cant think of any professional person in our life that hasnt become close to us. We care about all of them and they respect and care for us....o well it is the nurse who is missing out!
We are getting prepared for our make a wish trip in a couple of weeks. MAW wish grantors really messed up tims wish!!They completely reported the wrong things and now they cannot change it.... He wished for 4/5 days at Disney and 1 day at disney quest, and 1 day at universal studios ONLY...total of 7 days....that is his wish. they gave him 3 days at disney, 1 day at universal and NO Disney Quest! That was the biggest part of the wish!!!! they said a 7 day wish...then they tell us 2 of the days are travel not park days....o well...we discussed it and we decided we are stepping out in faith and will extend the trip by 2 days on our own. We will get a cheap-o hotel for 2 nights, change the flight to the 27th instead of the 25th and pay for him and the other BIG boys to go to Disney Quest. We decided this was exactly what needed to be done given the fact we may NEVER get to do this again. I am getting weaker each month and We do not know what tomorrow holds...Tim asked us if we could do this and well, we are. Many people will argue the fact that we should be happy with what we have...and we are. But we also know that the kids need to have some fun....and we have the support people with us, we may as well utilize the fact we are there anyway so we will extend it.
We all hope all of you had a wonderful holiday and enjoy the new year as it brings new discoveries and new blessings.
Very soon Rod and I will be celebrating 20 years of marraige (actually it will happen while we are in disney!!)...wow...I am old! LOL.. Praying for all our mito friends who are sick, or suffering quietly.
Bless all of you!!

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