Life with Jack

looking for rainbows. . .

2012-01-10T22:00:00.000-08:00

{in the storm}

This was taken by my iPhone on the way to Children's last week...

I know, I know, don't CLICK and DRIVE! But I couldn't help myself,

this was perhaps the brightest rainbow I had ever seen.

and for some reason it gave me a hint of hope...

for at that moment, I felt it was some kind

of sign... something good.

It immediately made me feel very small and insignificant,

kinda like when I was a child and we would lay in the cool grass

and look up at the clouds... you suddenly realize,

you're just a speck on this earth, one of many really.

Getting off our exit, I was in awe of the colors that sprayed

down upon the buildings, we were getting close to the Hospital
and I wondered if the rainbow would reach there too...

This right away made me think of all our little Mito friends
that are currently struggling right now, and how I hoped that this

was some small sign that they would all pull through...
and go home...

oh how I wish that were true but
Mito has claimed even more little lives,

and many more mito warriors are
fighting for theirs tonight.

It's so difficult at times to face the reality of this disease

and what it does to the human body.

I watch these beautiful babies change as they get weaker

and more sicker, not looking much like themselves anymore...

one organ after another, failing and needing more support.

Some days I feel as though I just cant take it,
I cant take seeing one more child suffer.

so many families, so much heartbreak...

feeling so helpless... and perhaps even hopeless.

What can you possibly say to a Mom that's watching
her beautiful child suffer and nearing the end of his long battle...

or
the friend that aches to hold her baby in her arms again,
to see her sweet smile and to hear that once high-pitch little voice?

and then I imagine the unthinkable...

Will that be our son laying in that bed hooked up to all those tubes

and wires someday, hardly recognizable and suffering...

and will that be me standing vigil and doing whatever

I can to keep him here with us longer...

will that be us being sat down and being told to just

"take him home and love him".

Naturally, I try very hard not to think of such things but

with Mito you cant help but wonder what lies ahead...

where we all will be in 2 years, 5 years,

will our son even be here in 10 years?

Some nights I lay in bed and simply cant

shake this feeling of such sadness.

I toss and turn and cant shut off my brain...

Then I look over at Jack, the dark outline of his

tiny body curled up and lying so peacefully,

as I hear the hum of his feeding pump and the
distant sound of his oxygen concentrator...

I think to myself, I don't want this moment to pass,

I want him lying next to me forever, then I snuggle closer
to feel his warmth and his sweet breath... clinging
to every detail, in fear I'll one day forget.

I tell myself, I love this little boy far too much for him
to leave this earth before me...

just how will I cope...

what kind of mother, wife or woman will I become...

how will I live without this little boy...

without his silly smile, the corny jokes,
and the feel of his skinny little arms
wrapped tightly around mine...

in those last moments,
how will I be able to say goodbye to all this...

Ill be so broken... just broken.

Pure sadness will completely overwhelm me,
but then I realize... my child is still here.

as crazy as that sounds, during those dark times,
it feels as though I'm already in mourning...
mourning of a different kind though,
but in someways, in that moment,
its feels just as painful.

I guess that's what this cruel disease does to me.

I've been reminded by a few Dr's more than once
the last couple weeks, that Jack has a life threatening disease
and not to expect things will get better for him, as they say
"you'll need to plan on having more support as he gets sicker".

Its always a tough thing to hear as a parent, even years after a diagnoses...
and in my head I'm yelling, I KNOW THIS ALREADY!
DON'T YOU THINK I KNOW THIS ALREADY?!

but with each word, my heart breaks a little more
and I find myself trying to hold back a floodgate of tears.

Today the progress of finding new treatments for Mito
is very promising, and maybe it's even leading to a cure one day...
but the reality is we all know that these things take time,
a lot of time and its often hard to get excited knowing that
our kids, the ones already here and fighting this beast...
are running out of that time.

Recently while being asked to have Jack take part
in a study to monitor children with Mitochondrial disease,
she calmly said,
"you understand, this isn't to help Jack but for the kids after him"

well that little word "after".... sigh.

I know this is something I'm just going to struggle with.
I'm not going to keep myself from having those sleepless nights of "what if's"
and I understand I'll continue to watch heartbreak all around me...

but I also realize how important it is for me to find better
ways emotionally to handle this diagnoses. I'm not sure what that looks
like or how to go about it but I can't allow these heavy thoughts
keep me from enjoying the time I have with my son now,
not one minute wasted...

after all, he is here, life is beautiful...

and he is so lovely.

where to go from here. . .

2012-01-05T23:00:00.000-08:00

Feeling frustrated.

Jack had the CT and Ultrasound of his kidneys today. We then met with a Nephrologist to go over the results. NORMAL, so I feel very good about that...but then that means we still don't have any answers to why he had all that blood and continues to have increasing pain in both lower sides. It started with just pain on the left side, but now its also on the right side and its even more painful there. Touching him on either side causes him to cry out. He can even feel it as he walks too.

The Nephrologist didn't know what to tell me. She says that Kidneys don't really cause pain but only kidney stones or some kind of obstruction would cause pain there, he has neither. His urine was also negative of blood today. BUT she is sending it out to get a calcium/creatinine ratio on it though to determine if his urine has any a build up of calcium. Apparently this can cause a gritty substance in there but normally that wouldn't cause any pain. His temp remains only a bit elevated between 99.7-100. His labs were flagged as HIGH with the WBC but she said not enough to say it points to an infection.

(You can see he was more than happy to have the CT scan once he found out it was without contrast, meaning NO IV line or needles today! whew.)

So we're back to square one with this pain and where all that blood was coming from.

So basically Nephrology believes its a Urology issue again because the kidneys show no sign of any stones, obstruction or any cause of the bleeding. But Urology said this was a kidney issue because his urine culture never grew anything, showing this was not a UTI.

Besides a bladder thing, she did say that this could also be Muscular or Skeletal. Which I thought was really odd since this all started the day he had all that blood that morning. Thinking how can two completely different issues start the same day and really not be related to each other...

In the mean time Ive got a little boy that isn't feeling so well. He's having bouts of dizziness, headaches and he is sore. Just trying to figure out how I can send him off to school tomorrow morning feeling so crummy.

So its a waiting game. If the pain increases or he develops more of a fever then Ill just have to take him in to see if anyone can figure this out. Until then I'm praying the ibuprofen will help and this just goes away on its own. Of course this all happens AFTER our big fail with the Pain Clinic appt, ugh.

SO AGAIN, we put Jack through more testing that didn't give us any answers in the end. Yes, in this case I felt we had no other choice to be sure his kidneys were healthy, but with each test and no answers, I'm questioning my every decision...just hate knowing if any of them are the right ones.

Wordless Wednesday. . .

2012-01-04T17:37:00.000-08:00

{sweet dreams little man}

Medical Update, where do I even start. . .

2012-01-02T21:07:00.000-08:00

I guess I can start with the EMG (Electromyography) he had in November,

which was a big fat FAIL.

EMG appt.

See that one and only blip on the screen, that was the only little shock Jack got this day because he started to scream. I really didn't have much hope that this would be completed anyway since Jack is so hypersensitive to pain and touch. Plus he had this test done back when he was 4 yrs old and it was very uncomfortable back then for him. But Dr. Richardson thought he might be able to tolerate it OK...WRONG. But it was worth a try.

Dr. Richardson is another Neuro that works with his Mito Dr. at Seattle Children's. I really like him and he was great with Jack. He felt he had some symptoms of a neuropathy to warrant the testing. Jack continues to have a "pins and needles" sensation in his feet. An EMG is the best test to determine if he has a nerve problem. We discussed him having a sedated EMG at a later date but then we decided to see how his Pain Clinic appt. would go first and get their opinion on his foot pain and other pain. I certainly didn't want to rush into another sedation.

In the mean time, we are still having many days at school like this

and this...

and this.

I seriously could make a 2012, 12 month calendar of Jack sleeping in the nurses clinic! Its quite a pathetic room, looks more like a prison cell than a nurses clinic. But remind you, the school was built in the 20's, its suppose to have that old school charm to it--or just old school ;p

Ill often get a call saying Jack has been sleeping in the clinic for an hour, "do you want to come get him?" He is either too fatigued to continue to sit at his desk or he comes in with tummy pain and ends up falling to sleep.

Despite adding a modified school schedule to his IEP, starting at 11am instead of 9:10am, he still has days like this. So we decided to cut back the tube feed he gets at lunch and have him drink his chocolate milk throughout the school day rather than the same time as his feeding, getting awfully full and uncomfortable. Jack fights us though about it, he doesn't like to sit at his desk and drink in front of his classmates for some reason--in fear of looking different I'm guessing. But we're working on it.

Speaking of his IEP, the PT said his hand strength has declined since she tested him in June. Jack is now using an ALPHASMART so he doesn't have to do much writing in class now. Its really helped and he can even print out his little stories and give it to the teacher. He also can carry it to other parts of the school too, its been a big help to keep him up to speed with his classmates. The IEP went OK, I wont get into it, same ol' stuff and all too boring.

NEUROPYSCH testing

Jack had his Neuropsych testing done at Seattle Children's in November.

That makes for one tired boy.

But to my surprise he was quite alert that day (thank goodness!) and performed really well for them. It was a long day, 3 hours of testing with breaks.

I also had to sit with a psychologist while he was in the other room being tested. For some reason I was nervous, feeling like I was going in for a job interview. But she was nice and basically asked me a million questions, along with the many pages I had to fill out beforehand. You know questions like.... Sets Fires, smokes or chews tobacco? Not true, Somewhat true OR Very true? Eh, these Neuro psych questions were quite silly for a young child :p

All in all, there should of been a long couch for me to lay on to tell her my life story, I nearly lost it a couple times talking about Jack and what just might lie ahead for him in his future. She seem to understand Mito well as she sees many of Dr. S's patients there. So it was nice to be talking to someone that "got it"

We then came in another day of testing the following week for about 2 hours. The Psychologist then went over some of the results with me from the first week of testing.

Neuropsych Test Results

They tell me Jacks Full Scale IQ score was within the Low Average range (FSIQ =89) His verbal comprehension index was within the Low Average range (VCI=87) His Perceptual Reasoning Index was within the Average range (PRI-100) His Working Memory Index was within the Low Average range (WMI=86) and his Processing Speed Index was within the Average Index (PSI=94)

"Hand motor Output performances identified intact unilateral hand motor coordination, but very weak grip strength, slow finger agility, and poor bilateral hand motor coordination. Jack was not able to easily and effectively regulate his bilateral hand movements in response to an external model."

"Visual-spatial performances test suggested constructional DYSPRAXIA (or deficits in constructing figures on paper consistent with cerebral impairment) and school testing with a measure of visual-motor integration last September indicated below average visual-motor integration"

"Language performances did not indicate impairment. Verbal intelligence fell within the Low Average range as indicated above."

"Conceptual reasoning fell within acceptable limits for age"

"Generative Fluency for verbal and non verbal material fell within average limits to above average limits. Jack was able to establish and maintain set when integrating and implementing a novel set of task directions to perform complex tasks"

"Planning fell above average."

"Cognitive flexibility was quite good, Jack was quick and alert."

"Memory performances were high average, except that recall and reproduction or abstract visual-spatial designs was low average, associated with the constructional dyspraxia."

In summary:

"Neuropsychology testing identified primarily intact abilities, consistent with intelligence, but identified constructional dyspraxia and low motor coordination on visual-motor task and low bilateral hand motor coordination. Jack did not demonstrate significant deficits, did not present with a profile of a clear acute decline, and did not show evidence of significant executive function of generative fluency deficits."

"Psychosocial adjustments is significantly compromised by multiple disease complications, including loss of bowel and bladder control, abnormal sleep patterns and marked fatigue during the day, and significant issue as Jack mostly sleeps at home during the day and has missed a significant amount of school."

Theres much more with recommendations but that's more than you want to read!

So I would say I'm pretty OK with what the results were, the important thing is there NO real deficits or decline at this time. Yes, he is in the LOW average range for many things but overall a good report I felt. This gives us a good baseline at where he's at at age 8. At least we have something to compare it to now as his gets older.

Oral Surgeon Appt.

Jack had been on a waiting list since summer to be seen at the Children's Oral surgery/Dentist clinic in Seattle. Apparently they only have a few Oral Surgeons and they only come to the Clinic 5 times a month! And with the Holidays, even less. So our original appt was suppose to be in October, but the day before they call and tell me there was a mistake in scheduling and said they had to cancel--OH NO you're not :( I was very disappointed since we had been waiting for 3 months already. So the quickest they could get him is early December, crap. I did not want to wait this long since his teeth are already crowding and they need to be pulled, 6 in all!

So here comes December and the morning of, they call me and tell me there was an emergency at the hospital and they had to cancel all her appts for the day. I seriously was going to cry, so I made a big stink on the phone, which isn't like me at all but seriously? they already canceled on me once! So she said to come in and they would see what we could do. I was able to get in after some waiting, whew. Glad I let my Ma-Ma BEAR out that morning!

The appt went well and Jack cooperated, whew. The Oral Surgeon was very nice and didn't seem stressed at all even though he had twice as many patients that day to cover the other Dr. He said Jack will need 6 teeth pulled unless more fall out on their own in the mean time. So we are still waiting for insurance approval. This will be done at Children's Hospital under sedation. Maybe in January.

GI appointment

Jacks December GI appt. started much like this, had a tough time getting him dressed and in the car. He basically slept through the whole appt. except for when we forced him up out of his stroller to be weighed.

We talked a lot about his continuing belly pain and his GI decided to have him get that MRI of his belly (MRE) to see if there was any inflammation growing in his small bowels again, causing the continued pain. I told her I didn't want this one to be sedated despite him having a tough time in the machine awake. His last anesthesia MRI of his brain didn't go so well! I thought he could probably tolerate 20 minutes in there... I had hoped anyway.

We also talked about a GJ tube (adding the J would be another tube that would bypass the stomach altogether and would directly go into the jejunum, the 2nd part of the small intestines) but certainly we don't want to complicate him more and we should try continuous feeds with just the G first anyway to see if that helps with the belly pain after he's fed. I still haven't done it, I know this would be life changing for him, having him hooked up and have to wear his feeding pack all day and night. He would hate it, hates the feeling of being fed and has trouble carrying anything on his back with his weak hips...I'm still trying to work myself up to this conversation with him :(

We got him the MRE appt right away--we had to. His GI felt we needed to get these results in before he had his Pain Clinic Appt on the 22nd. We had to be sure what we were dealing with wasn't the inflammation, at least then they would know why he had stomach pain.

Abdomen MRI (MRE)

This whole appt. didn't go as I thought it would. We were told that Jack had to fast, so he couldn't have anything by mouth or tube after 8:30am. We were suppose to check in at 2:00pm, and start with the Barium (liquid that shows up on xray) at 2:30pm...As you can imagine, tell a kid they cant eat or drink and they all of a sudden are VERY thirsty!

He was getting very loopy by 3:00pm, still haven't been given the Barium! So then they tell me that they probably shouldn't of had me come in that early--WHAT?, nice. My poor boy. So lets get this Barium in him so maybe he wont be so hungry people!

Well then the tech brings out this huge bottle and says its all got to be in him in the next 40 mins, oh boy this wont be pretty. I had an extension but he said they didn't have a syringe to fit it...wow, they have to right? this is a children's hospital? He seemed very confused as to what to look for, I had a syringe but not the right one--anyway we figured it all out eventually...

So I slowly pushed it in him as he played Mario Cart :) thank goodness the game was open so he could keep his mind off it. He did feel a little sick through the whole thing but I got it all in in time.

So just as we were being led back to the MRI machine, she tells me, "oh Ill be doing his IV line" WHAT? an IV? (for the dye) So why didn't anyone tell me this? She says the Radiologist always decides at the time of the appt if the child needs it....SO uh-oh, Jack immediately freaked when he heard her say that! started to cry and struggle in his chair. It took a long time, over 30 mins to plead with him to cooperate.

The nurses were starting to threaten him, saying they were going to have to have someone hold him down on a table. He finally agreed to sit in my lap, he even had some choice words for us all, it was not pretty. I told them he's not normally like this but heck the kid hadn't eaten for 8 hours by now! Give this poor boy a break!

I don't have any pics of the MRE, they tell me my cameras SD cards/cell phone data can be erased if I get too close to the machine so decided not to ask this time to do it from outside the room--besides by then Jack was pretty upset by then and he needed me to be his mom, not a photographer! of course my boy comes first :)

Jack had a tough time in there, it was about 30 mins long but for this one he needed to hold his breath for up to 20 secs several times. That's not easy for a little kid. Plus he felt like vomiting and we need to pull him out, thankfully he agreed to go back in for the rest of the testing, I felt so sorry for him. He was so BRAVE.

Well needless to say, we didn't get out of there until 7pm. Wow, we pulled into the parking lot at 1:30ish, it was a long day for both of us. The sucky thing was that we were suppose to get those results and page his GI Dr before she went out of town for the Holidays, well she was long gone and the office was closed of course.

But the next day we did get results: NORMAL

I was happy about that, but we also still don't know why he has the pain...and I put him through yet another test that didn't help him one bit. But we had to know for sure to move on.

Pain Clinic

So our long awaited Pain Clinic appt. arrives, finally after waiting a couple months to just to be put on the wait list and then another 3 months for our appt. Our Pain Appt is here and we can finally get some relief from Jacks leg pain, stomach and ect... and you guessed it, he's having a sleepy day again. We arrive at our 9am appt. to meet with a Psychologist first. Jack slept through most of the appt. So it ended up mainly just me asking the questions about his foot/leg pain, when its happens most, how many days a week, how does it affect his daily life, school ect...

Then our next appt was at 11:00am with 2 Pain Drs. After talking with me and asking me many questions, they finally had to wake him up to watch him walk a little bit and ask him a few questions about his pain which he mostly just grunted. He was clearly still out of it and didn't make a lot of sense.

Next we were sent for our 3rd appt of the day, to see the Physical Therapist

for a full eval. She measured and touched every part of his legs and feet.

She also had him go up and down stairs, timed him walking and running. Checked his gait and had him do a few exercises. She told me he has extremely weak hips and felt this might be the cause of his leg pain. She noted how he crosses his foot in front of the other as he walks, another sign of weak hips. She also noted his tight hamstrings. By then Jack was wide awake and performed quite well.

After all 3 appts. we had a lunch break. All the Dr's were then to go over the results and after lunch we were to meet again and they were to let me know their recommendations on how to treat his pain.

When we got back to the room to go over everything with one of the pain Docs,

Jack wrote this on the Dry Erase board for the Drs...how sweet is that? :)

Pain Clinic Recommendations...

Well now for the shocker...NONE AT THIS TIME.

Honestly I was so close to bawling my eyes out, she could see my disappointment. I couldn't figure out how they could come to this, nothing, nothing is all they can offer him?

"Well why do you say nothing Mrs. Pierce? We are offering you Physical therapy" Physical Therapy? You mean the Physical Therapy that we've had to discontinue years ago because we could no longer afford it? The therapy that will take months or who knows how long to strengthen his hips--as to relieve his pain, if that works or is the cause on his pain anyway?

I asked her about the pins and needles sensation he's having and she told me that because we didn't have enough of a pattern to it that she couldn't warrant recommending anything for the pain. That there just wasn't any good reason to if it wasn't happening like the "typical pattern" they see with neuropathy. So maybe we should of lied and said it was always in the evening? Jack had a tough time explaining his pain. He told them it didn't seem to matter what time a day it was, that it would come and go all day. I guess that wasn't the right answer. So frustrating.

I understand that they are really reluctant to prescribe pain meds to kiddos without real concrete answers to their pain, especially with a child that is often very sleepy anyway, and as she put it "a bit complicated" as there is too many variables and other issues he's dealing with that could be the cause to his pain. Like GI motility, weak hips, feeds and his sleeping pattern.

I could see she was getting annoyed with me as I shot down her PT advice. I'm sorry but unless you've been on this road, don't judge me. I am NOT a negative person, I'm willing to try anything to help my son.

I see now over the years Ive been passive with his care and don't raise enough hell when maybe I should have. I'm normally a shy person and have a tough time getting my voice heard...but this time I couldn't help myself to show my disappointment and emotions. She honestly thought she was doing her best with us but its like she never heard me or him.

This was the most disappointing appt. I guess I had hope that this was the appt that was finally going to help get relief from his ongoing pain. I'm not saying they didn't do their job or they clearly don't understand Mitochondrial Disease, as they see Dr. S's patients...but I was still crushed with the decision which I feel was mostly swayed by the PT.

To have to look at my son and tell him we did all these awful tests...2 long MRI's with horrible sedating affects, the MRI/MRE that made him want to vomit, the painful Urodynamics testing that made him scream and beg, the EMG that he could not tolerate and more...and tell him, I'm sorry but no one can help you. There isnt any Dr. that can make you feel better...is heartbreaking. I left with a paper that read 4 times, NO recommendations at this time.

Honestly, I'm tired...and was feeling a bit hopeless as I wheeled my boy to our car.

As soon as I got settled in the car, I got a call from the Sleep Center asking to see Jack. The Pain Dr must of felt bad enough to refer him right away somewhere. I'm not sure why we're seeing the sleep center but maybe for meds to help him get down earlier as he is often is too hyper to get to sleep at a normal time. This might help us get him in a better sleeping pattern. Melatonin has never helped much before at home. So we have that appt

late Jan.

So whats next you ask.

Some good news is that I found out that Jack will get some financial help with the Physical Therapy if it is billed through Children's. Seattle Children's doesn't offer outpatient therapy unless its to a child recovering from any injury or surgery ect... But there is a Children's PT office just minutes south of us, in the same office as his GI Dr.

His appt is tomorrow (praying he's up to it) to go over any exercise routines we can try at home and I'm hopeful we can possibly get weekly therapy started there too. I still need to ask my insurance what they will cover first...so its still up in the air whether we can do this. We'll see.

So whats been going on with Jack this week?

On my news years post, I already mentioned him peeing blood last week while we were up at my parents, he awoke crying and lots of blood and clots in the toilet. It kinda scared me, assuming this was only a bad UTI though. He also complained of left side pain. I took him in right away and had a urine sample done. They told me that they did find blood and clumps of white blood cells, and his urine was "cloudy" with lots of debris in it. So we sent it out to see if it would grow something to be sure this was a UTI. I asked him about a possible Kidney stone but he felt he would be in more pain.

Two days later and still nothing had grown. Jack was put on antibiotics anyway due to what they saw in the urine. The PED (which I really like and isn't our normal Dr., darn) said he had talked to his Mito Dr (Dr. S) and Dr. S. got a Nephrologist involved because they were concerned that nothing had grown and he was having that left flank pain.

The Nephrologist pulled up his Kidney U/S done in September and noted that they were ABNORMAL--HUH? no one told me this! That they showed dilation on the left kidney and lots of debris in the Ureter. Now whether this is alarming or not I don't know but Jack is still having that lower left side pain.

So Dr. S. said it was urgent that we get him to have some labs and another urine taken to check his Kidney function. Poor kid wasn't too happy about another stick :( But you can see a cherry Pepsi helped make it all better afterwards :)

The PED called me Friday night and said that the kidney function looked OK :) but they were still waiting on a couple more and the Metabolic panel which wont come back until next week (tomorrow probably now) After all this was a Friday and a Holiday weekend, isn't that the way it always is? Jack likes to get sick on weekends when no Drs are around.

Pam, Dr/ S's nurse also emailed me to let me know if Jack developed a fever, had more bleeding or more pain that I was to take him to the ER immediately.

His fever has really only reached a high of 100.8, but it has gone up and down, staying at 99.6 tonight now. It really hasn't done anything and I don't see any blood visibly anymore, just little brown flecks and its still cloudy with a lot of stuff in there but he feels ok besides the left side pain, diarrhea and his poor little feet have been in more pain this weekend, but I'm sure that's not related at all. I'm hoping that the tests coming back tomorrow will tell us more of whats going on. The PED thinks they'll want to repeat his Kidney Ultrasound again to be sure nothing has worsened.

So that's where we're at.

Until I get a call from a Dr. on what to do next, I'm watching our dear boy closely, and praying whatever this is the antibiotics are currently kicking its butt!

Thanks for getting this far, if you even got this far! I should never wait so long to update because its just too overwhelming to read!...so I'm sorry for that. This was probably more for me to get it all down and out of the way ;p

In the mean time, nothing can compare to

what other littleones are going through

as I type this tonight.

KEEP PRAYING for all our mito kiddos...

but put in an extra one for these

amazing little boys...

BRENT, KYLE & NOAH

They're all struggling for their life tonight.

They are WARRIORS in every sense of the word.

Please pray for strength, peace and healing for their families.

Bringing in the New Year!

2011-12-31T23:30:00.000-08:00

{in Pull-ups!}

Here we are again and no update on Jack, but I promise Ill get to it soon. So much going on with our little guy. We've had many appts, tests ect... Jack started to pee blood earlier this week so we're still trying to figure that all out. We stayed in tonight, keeping a close eye on Jack. His temp rose to 100.6, 101 wins him a trip to the ER--thankfully he hasn't gotten any warmer! But I quickly wanted to take a moment to add some pics of Christmas before I head to bed tonight.

We celebrated at Jeff's sisters in the morning and

then headed to my side of the family in the afternoon.

Our annual Christmas photo of the kids :)

and boy are they growing up!

BUT sometimes getting family pics of your kids look much more like this! :)

You gotta love them.

Our sweet Logan and Senna.

With my niece's :)

Theres always time for "tickle time" with Daddy!

Logan, you're getting too handsome my man!

He turned 12 on the 10th :)

Jack thrilled with more gift cards and cash!

I even added one of me...I promise I was NOT drunk here! :)

Senna trying on Jacks new hat, being silly as usual :)

(no she's not drunk either!)

A lot of this all day!

Senna getting on Jacks bad side!

All tired out.

Easton and Grandpa, looking good Dad! So happy you're back to your ol' self,

praying your cancer scan coming up is all clear!

AND I was not drunk here either! As a joke my Mom gave all us girls

GRANNY panties! So we stuffed ourselves and had some fun with it!

The guy in the middle is Skyler, my niece's boyfriend, he wore a pair too!

And this year we had a new member of the family! My sister, Jody and her girls

show Afghan Hounds and this is their new little girl "Mocha" She is beautiful!

The little Yorkie is my brothers dog.

Senna meets Mocha.

and our little MYA also wishing you a Happy New Year!

Thank you for all the love, prayers and support you've given me

and my family in 2011. Praying 2012 brings you many blessings,

peace and good health...

and a special prayer to all the amazing Mito families

that are missing their babies right now, and the little warriors

that continue their battle tonight (((♥)))

you're never far from my mind.

PRAYING we get closer to a CURE in 2012!

not a creature was stirring. . .

2011-12-25T05:58:00.000-08:00

{seriously Jack?}

You never know what you'll find under the tree.

MERRY CHRISTMAS!

I just realized that this is the first post Ive got here in December. I have several updates on Jack but have been so busy with Birthdays and the many Dr. Appts we've had lately, I just haven't found the the energy to sit down and write something. So much on my mind.

Here Ive been up all night as usual wrapping and packing to go up to my parents for a few days, and I fell asleep waiting for Jack to go down. I woke up frantic, not knowing the time or how long I slept! so worried it was already morning and it would be the first year ever our kids would wake up to empty stockings! whew, it was only 4:30 am, and I just slept an hour. I don't know why I always say things will be different next year and I'm back to staying up all night again on Christmas eve.

Just wanted to take a moment to wish

all my friends here a Happy Holiday!

Wishing you PEACE, LOVE, HEALTH and HAPPINESS

this Christmas and throughout the New Year.

I also wanted to put in extra prayers for my friends that wont be spending Christmas with their angel babies this morning. Too many of our mito kiddos have lost their battle this year and my heart continues to ache for their families.

AND many more prayers for the little ones this morning that are inpatient or on hospice, that continue their own battle with this cruel and unforgiving disease. Your family is NEVER far from my mind. I say so many prayers for you each day.

Thanks for all your love, prayers and support for Jack and our family.

I appreciate your many kind thoughts over the year.

And now for a real classic :)

Yep that's me, the chunky blonde kiddo with the very short bangs.

grateful. . .

2011-11-30T13:46:00.000-08:00

{Grateful} warmly or deeply appreciative of

kindness or benefits received; thankful.

So Ive been working on this post and another for awhile now, starting it but never finishing. Been very absent here... so many issues we've been dealing with but more on the medical stuff later...

For today, I am grateful.

Thanksgiving was wonderful. Jack had a great day and had so much fun playing with his cousins. We spent the morning at Jeff's Sisters for brunch, with her 2 girls and his parents. And then headed to my parents house up north for Thanksgiving dinner later. I love this time of year, so much so that I sometimes have a hard time enjoying it, knowing it will all be over so quickly. Then comes January, and the next few months to follow is the worst time of year for me... no holidays to look forward to and its so DARK and COLD out, not to mention Seattle's endless gray and wet days.

While at Jeff's sisters, I grabbed my 50mm lens, hoping that Jack and the kids were willing to be my subjects! So I quickly lifted the blinds and started to shoot whatever I could with the natural light coming through. You would think as my kids get older they would be more willing to allow me to take a few snapshots... but I find they still need to be in the mood.

Thankfully Jack and Mya were more than willing to sit still for a few minutes :) I love these photos. Showing his love for animals, anything furry anyway! So thankful that his stomach didn't give him much trouble and he was able to enjoy all the festivities (well the ones that didn't include food!)

I can really see in these photos how much older our little girl is getting. She turned 7 this year and is losing her beautiful mask, its turning white now :(

Our sweet Logan and his NEW braces! He looks older to me all of a sudden. He'll be 12 in a few days, wow. Still my sensitive boy who cries so easily... I have no idea where it comes from.

But such a loving boy, with a heart of gold... can't you just see it here? :)

Easton, he will be 15 in March. I don't even recognize this boy. Just in the past few months, his voice has deepen and has reached my height, he is looking more and more like a man each day. Sometimes its very strange to see him walking around the house and hear him talking, where did that little boy go? BUT for him, he is happy that he finally hit puberty! It looks like our boys might be a little slower in that area.

I am so blessed to have such a sweet teen boy. Despite all his challenges, taking 3 meds just to function, he manages his OCD/anxiety all so well now, although I know he's still trying to find his place in this world with the social stuff. But for some reason I'm not terribly worried, despite all the bullying he's had to endure over the years, I really think he's going to be OK. And he couldn't be the sweetest kid, so loving and still wants to hug us all goodnight every night before bed. (even his sister!)

Trying to get our annual "cousins pic" out of the way...

you can see it doesn't always go so well!

Watch it Logan!

hmmmm...

As for Senna (17) NO individual pics of her, that's not going to happen.

But I do always find a way to capture her true spirit :)

Poor Logan, why she always picks on him,

it bugs the heck out of him!

Taking some much needed time out to get Jack

back in the mood for a family photo :)

Gotta have one of the family together, whether they like it or NOT!

AND one of Jeff's beautiful family, I honestly couldn't

have better in laws... I am grateful.

Jack loves his Granny :)

We spent the rest of the morning playing APPLES to APPLES, so much fun with kids! Especially since they don't seem to know half of the people or celebrities on the cards!

A lot of FUN silliness :)

Then onto my parents farm and more cousins!

My beautiful Mom, going on 80, NO WAY! Here with little Maci, my nephews puppy. She always puts so much work in to dressing up the house for all of us on Thanksgiving. I love it!

AND my dear Daddy... so much to be thankful for, he is here. Beat his cancer, the heart attack and triple bipass this year. His hair has grown back too! He was so sure it wouldn't :) SO GRATEFUL, thank you GOD for giving him back to us.

My Sisters, Lori and Jody, my Brother, Jerry and his wife, Mary. Lori and I did our annual BLACK FRIDAY shopping marathon. We left at 9pm and did'nt come home until 12:30pm on Friday, I was exhausted. But we have so much fun together, something we always look forward to every year. Its just being together what makes it so much fun.

Another year together, very thankful :)

but most grateful that our little boy is here, not inpatient and stable. While struggling with GI stuff and not attending much school, I'm very thankful for what we do have and blessed for more time.

AND for all of you, affected by Mito or not, thank you for stopping by and offering me your loving support, thoughts, prayers and comfort through out the year. It means so much, honestly I don't know how I could make it each day without this community of such wonderful and amazing families. Love and prayers always for you and yours.

As we know, MITO is a cruel disease and it has taken so many littleones since I started this blog a couple years ago. So many beautiful babies and families affected,

its so difficult to think about.

Theres a little boy named Noah thats home on hospice

that I'm asking you to pray for.

He is beautiful.

Please pray that all his body needs is more healing and that he will prove

his Drs wrong, he's not at the end stages of his life.

We love you Noah.

keep fighting little warrior.

Better late than never I guess, Halloween!

2011-11-10T23:00:00.000-08:00

{AHOY MATEY!}

Wow, how busy am I that I couldnt get my Halloween post up.

I have to say our little "Jack Sparrow" was looking quite cute at school on that Monday. I was so glad he felt good enough to be there and get to participate in the annual "costume walk" to the retirement homes a couple blocks up the street.

He actually made the whole walk too! I did drive in case he couldnt and needed a lift, but he pushed himself so he could walk with his little buddies. It did take a toll on him though, he didnt look so well once his class came back to the school. I helped him out of his costume and he was really dragging, he pleaded for me to take him home. But I convinced him to try to make it the rest of the day.

After school we headed north to spend the evening and Halloween night up at my sisters house. Its always a tough drive there and back when Halloween lands on a week day and the kids have school the next morning but its tradition!

This is my nephews new puppy, MACI. She is so stinkin' cute! AND it was the first time the kids were able to see her. Jack took to her very quickly and spent most of the evening looking after her. She is very tiny, only 2lbs. She's a Yorkie/Poodle mix and as sweet as can be.

Time to get dressed up again Jack (not that he was thrilled to put the itchy wig back on!) He was clearly done even before we headed out to a few houses. Senna wasnt anything really, she found some aviators in my glove compartment and became a biker chick :) Logan was Dracula without the make-up, he wasnt in the mood. Easton stayed home and decided not to come up with us this year, he had homework of all things.

So now for some Halloween fun!

Just some of our ghouls!

I posted about this last year and probably explained how my sister has been hosting a Haunted House from her garage for many years in a row now. Both her and I have collected quite a few ghoulish props and creepy stuff over the years, many weve made ourselves. I use to dress up my house too but since we moved, we dont get any trick-or-treater down our private road. So I bring all my stuff up her way and we spend hours putting it altogether. Its quite a job too. Both her and I stayed up after until 1am in that cold garage the weekend before, whew. All that for one night, seems crazy but the neighborhood kids count on it so.

Its not Halloween without Chuck!

A few zombie babies are always fun! This is angry Alice :) We also have many animated full size dolls. Jason, Hannibal Lecter and Freddy from Friday the 13th to name a few. Not all the kids will come in, thats OK, we still give them the candy! We serve hot chocolate outside in the drive way, everyone has a great time.

Not sure what this is.

My sisters daughter, Alyx. Ready to go trick or treating (well, not Senna, too old for that nonsense!)

UH-OH, busted! :)

Ok, its just the neighbor, he parks his patrol car in the driveway. I did take the boys up the street a ways to go to a few houses. BUT it was really cold as usual and it was as much as I could take!

Jack gets the candy and gives it all away when he gets back to the house. At least he gets to experience it all anyways. I do hope he has some memories of trick-treating even if he doesnt eat.

Heading out for our long drive home, all COLD and exhausted! Jack DID NOT make it to school the next day, he slept until 3pm. He just did too much the day before, but I expected this. He doesnt make it to school at all much these days :( but thats another post.

Wordless Wednesday. . .

2011-10-26T18:25:00.000-07:00

{a long night}

some things never change. . .

2011-10-24T23:54:00.000-07:00

{sigh}

I don't think Ive ever been so unprepared for our Mito follow up...

The morning started all wrong. I could hear the sound of my daughters voice as I opened my eyes, it was still dark but I frantically jumped out of bed and quickly realized I didn't awake to my cell alarm. Knowing that this was the first day of the Seattle "alaskan way viaduct" closure, I would need to leave extra early to navigate through the downtown traffic snarl. I really thought I wasn't going to make it as I just inched along I-5 at 10 miles an hour. Thankfully we did but it took us 90 mins to get there, even in the carpool lane! Whew, I was only 10 mins. late and not late enough for them to tell me I would have to reschedule. For once, they were ready for us right away... but maybe that wasn't such a good thing after all.

This didn't allow me to have time to wake Jack up or gather my scattered thoughts together either. Because uunfortunately, Jack looked like this again. This will be the 3rd follow up in a row that he hasn't been awake for Dr. S., and I hate it. I made sure I got him down early, despite his tossing and turning, he got more hours asleep than he normally does... but I guess it didn't make any difference. Again, Dr. S. couldn't see what a great little boy we have, instead he looked quite pathetic slumped in his wheelchair and only cried when he tried to examine him and check his reflexes.

Whats worse is with all the rushing in the morning and NO time to shower (thankfully I was having a good hair day!), I forgot to take my little notebook with the reminders of what I wanted to discuss with him. So what Im trying to say is that I just sat there through the appt. like an idiot, forgetting some key questions to ask him...

FOR one, I failed to ask him about the the tethered cord possibility, and another, should he go back to see urology now that the MRI's of both the upper and lower spine are normal, which has essentially ruled out the tethering. AND what about his bladder/bowel issues, how common is it, having a child that was potty trained and then losing that skill? Should we just accept this as the end all, they didn't find anything so theres nothing we can do for him?

I know right, how did I forget these 2 important ones??! Actually, We did get on the subject of diapers and I was heading into the bladder/bowel stuff but that's when we got side tracked on the testing info, anyway...

I literally walked out of that little office and got on the elevator and it was as if it all just hit me, I found my brain all of a sudden... honestly I couldn't of be more disappointed in myself. Ugh, knowing I wont have another chance to have him sit in front of me for 6 long months was even more maddening! WOW... I could come up with many excuses but whats the point, I blew it, great job mom...

-------------------------------------------------------------------------------

But the good news is as soon as I realized I had forgotten and before we left the hospital, I sat right down and sent a quick email off to his nurse. Pam was able to get his opinion on the tethering anyway. Dr. S. agrees its very unlikely and is confident that the neurosurgeon saw nothing to indicate this is why he's having trouble with his bladder/bowels. I feel better and more reassured we've ruled that one out for good. The thought of spinal surgery was very scary. She didn't let me know if Dr. S. feels Jack should be seen by urology again for further treatment though.

I guess Ill just wait to see what DR. R (neuropathy Nuero thinks) His upcoming nerve study in Nov. may show something and give us answers, however Dr. S. feels that a neuropathy wouldn't necessarily affect his bladder or bowels... so what to do, what to do.

I did mention his on going leg pain but he didn't say much about that, I think he's waiting to see what the nerve study shows and then letting pain clinic handle that stuff... even though we cant get into the pain clinic until possibly Jan. or Feb.! Theres a cancellation wait list a mile long that I call weekly but it would be a miracle if we could get in much sooner. Pam got me excited when she told me "I know someone, Ill try to get you in earlier" Only to find out later, this person she knows only works with inpatient kiddos, but I appreciate the try, Ill keep calling the pain clinic and bugging them!

I talked about his continued twitching but no response on what this means, just more hmmm... as he continued to focus on his monitor and typed away. Dr. S. always has his wheels turning and often is very quiet while he studies your child. So I find unless you ASK a question, you may not get much.

I mentioned the CVS and the recent retching in the middle of the night and Pam suggested I start his feeds at 8pm so that he wont be laying down long for his entire feed. I agree, but this would mean Ill have to hook Jack up in the evening and have him on a continuous feed while he's awake. This is his most energetic time of the day, not sure he would like that as he hates being fed due to all the discomfort. Although he's fed like this at school, its a small feed and many times they have to turn it off because he complains. This is why the night feeds have always worked for him, so he's unaware that he's being fed. I guess Ill just have to decide on what to do about this one.

I suppose we'll be heading in that direction at some point anyway when he wont be able to handle larger feeds and will need slower rates. I'm always trying to do whats best for Jack in terms of nutrition and also finding the right balance between pain management and allowing him to have a normal life as much as possible... without being attached to a machine.

I then asked Dr. S. about his recent MRI and what the results were. He brought up a little image of Jacks skull on his computer and said it looked the same, a normal MRI, WHEW! Then he mentioned his MRS still showed lactate peaks, just another indication of Mito disease. I asked if it was worse than the one in 2009 but he said it was hard to tell. He didn't seem concerned at all so I guess I wont be either. I am very thankful his brain looked good and showed no white matter disease or disease progression, this is a big relief. BUT maybe those lactate peaks are really here to stay now and will always be present.

We also talked about the anesthetic he got for his MRI this last time and how he awoke like a maniac. Apparently Dr. S. wasn't even aware that Jack received PROPOFUL, as this is a BIG NO-NO with him and his Mito kiddos. As I posted before, I knew this and even brought that up, telling the anesthesia nurse that Dr. S. didn't allow Jack to have it for his 2009 MRI. She reassured me that it was OK, that it was discussed and he also received in for his dental surgery he had in 2010! News to me, and apparently to Dr. S. as well! By his expression, he was less than thrilled to hear that. So this was noted and wont happen again.

So with his dental surgery date coming up, we'll need to discuss what they can use to sedate him. Sadly, it will likely be the 2 inhalant gases they've used before, the same stuff he also did very poorly with... so I expect we'll have the same "wake up" experience this next time too. Maybe we just wont ever get it right with our boy.

Dr. S. said Jack was growing pretty well, 50% for height and 10-15% for weight. BUT we've always been low for weight, Im just glad to see he's gaining in height! He boosted up his dose of COQ10 and also added vit D to his daily meds, he appears to be low here.

As for the testing, Dr. S. told me that the nuclear GENE chip test is finally ready and available for us to do! Jacks blood has been banked and been waiting to be sent out for nearly 2 years now!

BUT now for the let down... Dr. S. cant order it, only his PED can, theres some conflict between the providers. So that's our next step... BUT the question is, will our insurance even cover it? They tell me its about $16,000. I'm thinking our insurance wont feel its necessary and understand why this info can be so important to families. NO, this info may have NO affect on his treatment, unless another drug becomes available and only the children that have a "identifiable gene" can take part in the study. But knowing the gene can also give more info on our other children and their children one day. BUT I'm less than hopeful that this insurance, which is an insurance for people that are unisurable will find its needed and will likely deny it right away. Even if they offer to pay half or 80%, we still wouldn't have a few thousand laying around to make up the difference. I guess we can always hope theres a chance they will cover it and try anyway.

AND with the EPI-743 study coming here to Seattle Children's. (this is the trial drug that the researchers have seen some success with, but for now is only offered for kids 3 months from end of life) Dr. S. said theyre close and just working out the final details. Seattle Children's already has a handful of very ill kids waiting to start on the trial that are in their final days. Praying this means some of our sickest local mito kids will see benefits from this drug at a time they need most. I'm also hopeful that this is just the first step that will allow all our kids new treatments in fighting this disease.

Before we left, Pam handed me a handful of paperwork to sign to have Jack be part of a research study to look at Mito patients disease progression over time. Its private and he will be given a number, none of the info we provide of his care will identify him. I was gladly to help.

I asked her if we will get any information from this and she calmly said, "no, you understand this probably wont benefit Jack but the kids after him" I know what she meant... but the words "after him" was difficult to hear. I didn't like that feeling and what that may of meant or sounded like. It hurt and quickly reminded me that we have a long fight in front of us. As of today, there is NO CURE and theres no guarantee there will ever be one in our lifetime or our sons... just a tough thought to swallow... all over again.

NEED PRAYERS...

for a 3 year old little boy named Calvin who also has Mito that Ive asked for prayers here before. I met up with his parents, Tricia and Brian at Children's today after our appt. Cal was having eye surgery and they were still waiting for the surgeon to brief them on how he did. I was there when the surgeon came out and told them both that he did well and the surgery was a success...

but they were also still nervous because sadly little Cal has a history of not awaking well from anesthesia. AND as far as I know, he still hasn't woken up, over 12 hours post op. Unfortunately, its not uncommon for many mito kiddos to have trouble with anesthesia. His parents are worried, and now he's developed a fever and needed to be cathed. Ill have a tough time sleeping tonight not knowing how he's doing. Continued prayers he improves quickly, lots of hugs for sweet Cal tonight. Thinking about you both.

ALSO

I need your prayers for a local family that just lost their beautiful 7 year old little girl Peyton, to an inoperable brain tumor. She was the most amazing little girl and will be missed by so many that knew and loved her. Just so heartbreaking.

AND PLEASE PLEASE take a moment and go to the families website and see what they've done to give back to so many other special kids in need. There are no words for families that give back like this, helping change lives of many little ones that are ill and in pain and still fighting. Peyton's dream was to have a farm of her own one day. They say "Peyton was born with a gift of love and tenderness for life" and there is plenty of evidence of that in the many pictures of her holding the animals she loved so...

http://www.peytonsranch.org/Peytons_Ranch/Welcome.html

Please pray for comfort, peace and healing in the days ahead.

(oh geez, another very long post, well I hope some of you could get through a tiny bit of it anyway...need to edit better! thanks for stopping by)

yakety - yak. . .

2011-10-20T23:57:00.000-07:00

{the bowl is back}

so it seems anyway.

Jack has had some rough nights lately. Wednesday, his overnight feed had to be shut off and he wasn't wanting to keep his O2 on either. He was really nauseated and retching. Thankfully the Zofran finally kicked in and he fell asleep just after 4am., then I was wide awake!

So we both were exhausted by 8am., I dragged Jack out of bed to get Logan off to school by 8:45am. His new 11am modified schedule hasn't been very successful, so far anyway. Or at least it hasn't helped him attend more days. But theres been some real benefits too, great for Logan, now that he doesn't need to worry about me showering first thing and getting Jack altogether--meaning the fighting with tooth brushing's and just trying to get him alert enough to dress. So Logan is extremely happy with this new schedule! He has a lot of anxiety about being tardy for school. The kid will pace the floors with a frantic look on his face, its very stressful. Especially when I'm struggling with Jack and anxious about trying to get him in the car and off to school.

Hopefully this isn't a start of a new cycle. The gas meds that I'm giving him 4 times a day now isn't helping like I had hoped. He still has stomach pain but more of that awful cramping. Probably due to his bowels trying to get the air out. He gets all Elecare and no blended food, in hope this will help eliminate the air accumulating. Thankfully his weight hasn't changed much, going down a couple pounds but then evening out ok.

Some positive news, although he isn't attending school much, only 1-2 days. His PT introduced him to the Alpha Smart which he loved! He can type and then it can be printed out. I really think this will help him keep up with his peers better. They often will be on their 3rd paragraph while Jack is still struggling on his first sentence. he still needs more time to learn it but I'm hopeful we found something that will allow him to participate in the class assignments.

Jack brought home his "letters home" notebook today. Its a project his Teacher started with the kids. They all have a notebook and they write in it every Thursday. They write a letter to their parents and then the parent writes back to the child. What a fun idea, love to read this book years from now.

Jacks 1st letter:

"went to the clinic 3 times today and another kid went 2 times and he went home"

hmmmm... now that's just sad. The "clinic" is the nurses office, he told me he was having some bad stomach pain today.

So now I need to write back to him... thinking on what I should say. I'm really hoping his next letter ends up being more about fun things and not just about ending up in the nurses office. Our poor kids, they live such a different life than their little friends.

Here's to better days ahead.

Words Wednesday. . . a night with Dad!

2011-10-18T23:33:00.000-07:00

{ go seattle sounders!}

Jack was so excited! He had a great day at school and looked

forward to his special night with Dad, all by themselves!

I met Jeff downtown so he could take him.

He did pretty good too, although he did fall asleep once in the car :)

oh, and we lost... not that it mattered,

just making great memories with our boy...

she's 17.

2011-10-14T23:21:00.000-07:00

{happy birthday senna!}

Didn't she just turn 16? Time goes by so quickly, in another short year she will be an adult... wow. Our little girl has really grown up, in many ways. Being the only girl hasn't ever been easy for her, often feeling a bit left out when the boys are all together in another part of the house playing. AND now as she's gotten older and becoming closer with her brothers, sadly, she will soon be on her own, sigh.

As I pour through all the photos Ive taken over the years, I look at those little faces and miss those kids... I miss their little voices, the endless giggles and all those silly conversations we used to have. But I'm also finding joy watching them grow into these amazing people. All with good hearts and loving souls. I like to think I had something to do with it, or at least helps support my extended breastfeeding, always baby wearing, family-bed parenting!

...and now for some sister, brother silliness!

I'm proud of the young woman you've become.

Never lose that spirit!

I love you baby girl.

{yes, its official, you can now get into R rated movies!}

not always la-la land . . .

2011-10-13T23:15:00.000-07:00

{violent sleep}

{a difficult day for our boy}

Once again at Seattle Children's for yet another MRI. This time sedated.

I was told it was going to be a long MRI, which included the BRAIN and T SPINE. Since Jack could easily be in there for over an hour for this one, Dr. S. decided it would be too difficult for a child to stay still, I was relieved... and not, as I quickly got nervous about the anesthesia.

Well, I wish I could say it was uneventful but it wasn't. Jack was his sleepy self when we checked in so I was really hoping when they rolled him back there he would easily drift off into la-la land without any struggle.

Unfortunately Jack quickly woke up from his stroller once he started to breathe in the gas. He screamed and kicked, taking 3 of us to hold him down, not to mention the Anesthesiologist that was trying desperately to get him to breathe deep enough to put him under. As I walked back to the recovery room, I just knew this was NOT a good sign.

About 90 minutes later they brought him in. As he slowly woke up, he begun to struggle once he felt the tongue depresser in his throat... then he awoke very combative, kicking, screaming, pulling his O2 off and trying to yank his IV out, needing to be restrained.

They call this "Emergence Delirium" Its described as a dissociated state of consciousness in which the child is irritable, uncompromising, uncooperative, incoherent, and inconsolably crying, moaning, kicking, or thrashing. Apparently its seen much more in younger children, from 2-5 years old. But for those of you that's witnessed it yourself, you know exactly how it looks!

I was worried this was going to happen. It seems 8 out of 10 times, this is what we'll get as Jack recovers from anesthesia. He was given the Sevoflorine/Propofol combo today, apparently this is the same combo that worked nicely last year for another procedure, besides having a tough time waking up, he awoke peacefully. BUT I just learned this today, as I didn't even know he had the Propofol, thinking he wasn't allowed to have it at all.

Propofol is one of the drugs that's on the No-No list for Mito, its said to be Mito Toxic. Dr. S. didn't allow Jack to have it with his last MRI, in 2009. So Im not sure why it was used in 2010. I did ask the Anesthesia Nurse on the phone about it yesterday and she told me the Anesthesiologist that works with the Mito kids here at Children's felt comfortable with it since Jacks records showed he had done well with this combo before, and since he has a known poor reaction to the 2 inhalant type, this seemed to be the best choice. Ive read its safe for our kids for short procedures, we know every child is different and theres Drs that have a differing opinion on the Propofol with Mito.

In any case, I would love to know why he did so well with it last year and not today, maybe Jack will never be consistent with Anesthesia. All I know for certain is, we didn't see this when he was a baby/toddler when he was being seen at Mary Bridge Children's. But I never saw them use inhalants on him, only the propofol alone. I just remember him being put out with the syringe only. So it could be the inhalants causing all this.

I sure wish we could find the right mix though because its pretty difficult to watch him go through that. AND its one thing when he was little and easier to hold but now at 8, hes very difficult to manage!

One piece of advice Ive learned, DO NOT try to talk to your child when hes in this state, its like trying to talk to a child having a night terror, it WONT WORK! They just get more agitated. I basically had to force Jack into his stroller and got out of there as quickly as I could, him screaming the whole way! Yep, I got a lot of stares!

NOW Jack is being sedated again for his upcoming Dental surgery next month, so I really need to discuss this more with Dr. S. He sees him on the 24th for his 6 month Mito follow up. I hope he can tell me once and for all if this combo is safe for him. Maybe he will know what we can try next because I'm definitely not looking forward to a repeat of today!

Please pray Jacks BRAIN and SPINE look good. He's never had an abnormal Brain scan, only an abnormal MRS, showing lactate peaks.

MRI's scare me... its one of the few tests that can show real progression of this disease. Ill be devastated if thats what we see this time... Im just not ready to actually physically see it on a scan... sigh. Where is my dear friend, denial...

"I wish I had a new body"

2011-10-05T23:42:00.000-07:00

What do you say to your child when he tells you that?

Sigh, its been a rough few weeks.

I'm SO behind on Jacks medical updates. Alot has been going on with our boy lately. Many Dr Appts, 2 new specialists, more testing and another IEP meeting at school... which I never seem to get through without a few tears.

So here it goes....

September 19th Jack had the dreaded URODYNAMICS Study testing to see how his bladder is functioning. It was like everyone warned me about, bad, bad, bad.

Jeff was totally against it so we had some ~~convincing~~ talking to do before we could come to the decision to go ahead with it. I knew it would be an invasive and quite an uncomfortable test for our sensory boy. BUT in the end I couldn't see us moving forward without knowing more information on why he's lost some bladder and bowel function, which all started last October. Jeff did finally come around and felt better knowing we could stop the testing if he wasn't tolerating any of it...

Well, that sounded good anyway! It didn't quite go that way though. I should of known it would of been pretty difficult to give up once he was laying on the table and maybe so close to possible answers, even if he was screaming. You notice I have NO pictures for that day.

It was awful and the worse thing Ive ever had to witness him go through. Placing the catheter was the worst part, and the one in the other end wasn't any easier. They also used 3m Microfoam tape that he ended up having a severe reaction to. So when he was screaming in pain as we were trying to remove it, we couldn't understand why he was so upset. But we quickly found out when we saw his little bum when he got up. Both cheeks were bloody red that begun to turn into what looked like bruising. It was awful, they kept him for awhile to be sure he was OK, he had a lot of trouble sitting, poor kid. We made sure that was written in his records, never that tape again! Just praying we never have to repeat this test at all again.

Urodynamics RESULTS

abnormal.

He had what they called spasms where he shouldn't of. He also held a lot of urine for his little size, meaning he isn't likely feeling it much when he's getting full.

But to our surprise the Urologist said that he felt Jack has something called a TETHERED CORD.

"Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. Attachments may occur congenitally at the base of the spinal cord (conus medullaris) or they may develop near the site of an injury to the spinal cord. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive."

Well that was a surprise.

Why would this Dr. think that? he says because of Jacks clinical symptoms. For one, after he looked him over, he told me he had one leg longer than the other, a red flag for the tethered cord. I'm thinking this must be new because he was gone over very carefully with a thorough exam from a PT, at Children's 2 years ago. She measured all his limbs, feet, legs ect... and he was then examined by the Physiatrist afterwards because his foot was starting to turn in. I'm sure this would of been noted then.

Here's a few more:

Bladder AND Bowel incontinence (after over 2 years of being potty trained, now back in pull ups) increased pain in legs pins and needles sensation in feet, legs. His foot turning in more, he's been dealing with that for 2 years. (they told me it was a hip thing) and muscle weakness

BUT of course all these could be Mito issues too, the only 2 things that stand out more is the longer limb and foot turning in. He is still "twitching" which showed up on the overnight VEEG he had in June, but he didn't say if it had anything to do with this.

He then told me that many times the tethering doesn't show up on the MRI and if the child has enough of the symptoms then they sometimes go ahead with the surgery anyway. Of course I'm thinking, without evidence? that's scary. There is always a risk with spinal surgery of any kind. It can be a 4-5hr surgery and lots of recovery time ect... The sad thing is he told me that not to expect the bladder/bowel stuff to improve after the surgery because that part normally doesn't change :( but the leg pain ect...can improve. AND of course preventing further damage.

He ordered an MRI of the spine, referred Jack to see a Neurosurgeon... and then I drove home in a daze.

On September 29th Jack had his MRI, unsedated.

He was scared. He's had a bit of a cough for a week now and I was desperate to get it calmed down that morning. Even if it meant pushing cough medicine in his GTUBE, as I'm pretty sure it doesn't work that way...but like I said, desperate! Just prayed he wouldn't have a cough attack and then have them tell me we would have to reschedule.

When he laid down the the nurse looked him in the face and said "we only allow you to blink and breathe" It was then I saw tiny tears flow from his eyes, and down his cheeks... I nearly lost it but pulled it together so he could remain strong without worrying about his emotional mother!

He was a champ and only got scared a couple times with all the loud pounding noises. I keep thinking they will someday figure out how to make these things quiet! seriously.

Jack needed his routine bloodwork, (every other month) This time for his GI who wanted to check his liver function (its been elevated) and to look for inflammation markers.

So we hung out by his favorite fish tank and his 2 favorite sea creatures. This hermit crab is HUGE and always fun to watch. Jacks favorite color is blue, so no surprise that he loves this little blue fish that always hides from us.

As always, Jack was thrilled to see HECTOR working that day :) The guy is amazing with those needles! Making our trips to Children's for labs so much easier (on the both of us!) He was definitely having a droopy day (I always can see it in his eyes) weak, weak, weak. But we were both exhausted.

LAB RESULTS

Liver looked much better!

BUT his SED rate and CRP were both elevated, indicating inflammation.

School IEP

So he falls asleep in the car and I still needed to get to that IEP meeting that just so happened to be scheduled on the same day as out MRI. We checked in at Children's at 11:30am but they didn't take him back until 1:05pm, then with terrible traffic through town, there was NO way I was going to be able to drop Jack off on the couch and then run to the school by 3pm....

I was naturally late.

out of breath, I ran in still with my Children's parent lanyard around my neck. There in a quiet room sat 6 woman at a table... waiting for me. Despite letting them know I was on my way, I felt awful.

The Principal, PT/OT, his Teacher, Formal Teacher, Special ED Teacher, Psychologist and Nurse.

The IEP meeting went well, besides me tearing up when I heard the phrase "as his disease progresses" I thought I was doing OK before that, but I probably would of lost it anyway. I think with the last few appts and the recent concern from his Drs, I was pretty fragile sitting there, and about ready to crack.

He is doing OK. Not great and in the low range of average in some areas and below average in others. His PT/OT said that his hand strength had declined quite a bit since she had tested him in June. Ive noticed it too but didn't think it would be that noticeable. Balance is still an issue, talked about his falls at school ect...

His handwriting is still very poor and he fatigues so quickly that she couldn't even finish some testing. She says after 3 mins of writing or drawing through mazes, he cant continue. This is why homework is such a challenge for him these days. So we talked about having him possibly use a keyboard at his desk. But first they need to see if using a keyboard is just as tiring! So more testing. AND also using a software like "Dragon", a dictation software.

I just knew 3rd grade would be the year we would see a big change in his education, more accommodations will be needed as he falls more behind.

Since he hasn't made it to school much this year yet due to so many absences we also talked about having a modified school schedule. It was decided that he would start at 11am and stay until 3:40pm. They first suggested 3pm but it just doesn't make any sense to fight traffic to pick him up and then have to turn around and pick up Logan at 3:40pm. So we'll try this first. I'm not sure it will make any difference as he's never "all better" by 11am on those bad days. PLUS its not like Jack can sleep in, he still will need to get up and get in the car to take Logan to school at 9am... so not perfect. But we'll try.

Spine MRI RESULTS

On Oct. 4th, Jack had his appt. with the Neurosurgeon. Not sure I was thrilled with her, not exactly the warm fuzzy type, very get to the point and black and white.

{hey skinny boy!}

normal.

Jack was asleep throughout the visit, she tried to wake him to look him over, well he tried! But his Blood pressure was very low again (70/44) so I wasn't too surprised he was out cold. I just hate when he's like that. I got prepared to get the "does he walk or talk?" question.

I was pleased to hear it was normal but after what the Urologists told me---kids with Normal MRI's still having a tether and other Mito moms saying their childs MRI was also normal, but they went in and found tethering... it got me very worried.

I was expecting her to talk about the chances of it still being tethered, despite the normal MRI... but she didn't. She actually made me feel crazy for asking her about what the Urologist told me. Saying she didn't know why he wrote it in his notes and told me this. She just wouldn't say if she's seen or heard of kiddos with normal MRI's but later finding tethering. She just kept saying, "Hey, I love surgery but I don't know, because I don't operate on kids without any problem" She told me twice I was welcome to get a second opinion.

Honestly, she made me feel like I wanted the MRI to be abnormal and surgery! I just wanted to be sure we were not missing anything. Obviously she went to Med school and has to know this happens occasionally. She finally said, "well, its really controversial".

So I don't know what to think. This is something Ill be definitely going over with Dr. S. later this month.

The appt. didnt last more than 15 mins, I kept thinking, then why am I here meeting with you if theres nothing to discuss. Why didn't she just call me with the results if its so black and white.

BUT before we left, She tells me that it would still be a good idea to have an upper spinal MRI... AH WHAT??!! You mean they didn't scan the entire spine??! (it looks like it above but this isn't) I guess it was stupid of me to assume that! "NO, they only ordered a lumber spine MRI" You would think they could of just scanned a little farther up his body, considering they weren't sure he had a tethered cord in the first place...ugh.

She shook my hand and said, "I'm sorry, but theres nothing I can do to help your son" so that was that.

NEUROLOGY appt.

Oct. 5th

Today Jack saw another Neuro, specializing in Neuropathy. Dr. S. referred us to him after I emailed his nurse about Jacks increasing leg pain/pins and needles sensation in his feet.

I LOVED THIS GUY!

Dr. R was really warm and easy to talk to. Don't you just always know if you're going to like a Dr. in the first couple minutes? He was great.

It was a productive appt., despite Jack looking like this in the waiting room! Another low BP today. Thankfully he woke up and was able to be examined and answer questions for him.

Dr. R. went over his whole body, testing his strength in his arms and legs. He quickly mentioned his droopy eyelids, asking me if this is normal for him. It really comes and goes, worse on his weaker days.

He saw some good stuff, Jack has pretty good leg/foot strength, his right is weaker than his left which surprised me. The right toe was very weak though, which could be a sign of Neuropathy starting... or NOT.

His reflexes are there, but dim. In fact he appears to have hyper reflexes now, which is even more surprising. He's always had NO reflexes in the knees but now that's changed.

He says he is definitely HYPERSENSITIVE to touch and pain. Even simple touching of his legs, feet and arms made him whimper. That also could be a sign of Neuropathy... or NOT.

WHATS THE PLAN

Dr. R. is going to review the EMG he had when he was 4 yrs old and go over what was seen then. He feels the symptoms he's having now does warrant another

EMG/NERVE STUDY... boo.

"To find damage to the peripheral nervous system, which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves."

The EMG for Jack was quite traumatic for him to endure--probably because of his hypersensitivity, that he appears to of always had, even when he was a baby. The good news is he said he doesn't feel we need to do the muscle part, which includes needles. So that's a relief!

We are still waiting to be seen at the PAIN CLINIC, but the wait is long, probably 3 months he says.

ALSO

At the end of our appt, he was actually able to talk to DR. S (mito Dr) and they both agreed Jack needs another Brain MRI with contrast. His last one was in 2009. His MRI's have been normal so far, but his MRS this last time wasn't.

It showed LACTATE PEAKS, Dr. S. said this just confirms Jacks Mito diagnoses. Lactate levels in the brain are normally very low or absent. This isn't an uncommon finding with Mito.

So since he needs another spinal MRI, we're going to schedule these together. This will be a long scan though :( I so wish this next time he could have some light sedation. An hour or so without moving might be a bit much for him to do without it. More to discuss.

GI UPDATE

So Jack still has a lot of tummy pain. Since his recent labs showed inflammation, his GI suggested we might want to order an MRI of his abdomen... that's right, ANOTHER MRI! But we talked today and she suggested we should do another KUB (xray) of his belly and see if he is constipated... grrrr..... OK, I know this kid is NOT constipated! But whatever, do another.

KUB RESULTS

abnormal: GAS!

BUT I wasn't surprised, this is what his belly scans always look like! NO POOP, just air. All the dark area is trapped gas. So what can cause gas to build in the bowels? The first thing they like to rule out is a HIGH FRUCTOSE Intolerance and or a LACTOSE Intolerance. Jack has tested negative for both, twice!

We've used the lactaid and even removed his beloved coke and chocolate milk he loves so, but it hasn't made any difference in his pain. Dr. L feels this is likely due to his slow motility, he's just not able to move this air out on his own. He is not a gassy kid at all.

So the plan is to eliminate his blended food (which is only baby food) this means his school feeds and replace it with the ELECARE formula for all his feeds. Also start him on a med that he will take 4 X's a day, in hopes that it will help keep the gas under control. I'm praying this will make him feel much better. We will trial this for 2 weeks and see what happens. As far as the inflammation seen in his labs, we'll keep monitoring it.

WHAT NEXT?

Jack see's Dr. S. for his 6 month Mito follow up this month and also see's the Children's Ped Dentist to talk about the 6 extractions he needs! Poor kid, he wont like that one. He will be sedated and it will be done at the hospital. His baby teeth aren't coming out on their own and causing extreme crowding. We need to make room for those big permanent teeth coming in. So basically he will only have 2 front teeth for awhile, can you imagine? I hope the kids at school will be kind :(

WHEW... Are you still with me?

I'm feeling bad that I haven't been spending more time here and checking up on our little Mito friends. I think I do more of that on FB these days, just easier for us Moms to update/comment there. Just know I'm thinking about you all, always continued prayers

for your littleones.

Thanks for stopping by and checking up on us.

You can see why we call him our little HERO, I'm so proud of our boy!

Wordless Wednesday... Dad!

2011-09-28T21:48:00.000-07:00

Awareness Week, surviving life with Mito. . .

2011-09-22T21:14:00.000-07:00

When someone asks me "what exactly is Mitochondrial Disease?"

I rattle off a number of facts to describe what this disease is and

the devastating affects it can have on the person who is diagnosed.

"Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function. In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. When mitochondria are not functioning correctly then the organs in our body begin to suffer"

But the truth is, MITO SUCKS.

And this is the true definition:

MITOCHONDRIAL DISEASE: cruel.

When you're living with MITO, its with you all the time. Theres NO way of escaping it. Every day you know, when you open your eyes in the morning its going to be there, staring its ugly face right at you, quickly reminding you of all the affects it has on your child and your whole family. Not to mention the affects it has on so many other beautiful children and families that you've gotten to know so well over the years.

...and many are dying.

So how do I find peace?

...our child has the same disease.

what can I tell myself to reassure me that we wont be

the next family that will have to bury their child?

Ive been very emotional lately, trying to gather my thoughts so I could blog again. I feel guilty I haven't posted in the beginning of Mito Week, which is Sept18th-24th.

I'm thinking that most of you reading this right now already know all too well what this disease is and why its so important to spread the word and bring awareness for a CURE. But even if I reach one person, its important.

Jack has had a rough week. More testing, and very painful testing on Monday with some unexpected results that Ill post later about. Its been stomach pain, more fatigue, leg pain, everything pain! and missing school all week... So I haven't had the time or energy emotionally to sit down and write... and to hurt. Sorry if this whole thing reads more like I'm rambling, and not written more beautifully. I don't think I was given that gift anyway (just saying)

so I cry.

every day.

I'm in somewhat of a dark place right now, trying to find a way to get back to doing what I always tell others...one day at a time and always look for the blessings. As I feel there really isn't any other way to live with Mito... but it's still hard. Seeing Jack struggle more this week is getting to me... where is my good friend "denial" when I need him?!

As I write this, there are many families dealing

with so much more than we are...than Jack is.

WAY MORE.

My heart hurts knowing that.

And I often feel guilty to ever complain, we are so very blessed that

Jack isn't inpatient, he can still walk and we can still hear I love you's...

He is HERE.

Mitochondrial Disease is often difficult to explain and understand, theres such a wide spectrum of symptoms and severity. This is why its so undiagnosed, misdiagnosed and considered "rare" when its really not.

"Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. BUT the estimates of the number of people with mitochondrial disease keep increasing as the medical community learns more about this disease. Right now the statistics show Mito is as frequent as all childhood cancers combined and, sadly, just as deadly"

80% of children diagnosed before the age of 5 won't survive to be 20.

this is the worst sentence a parent of a child with Mito can type, or read.

HOW can one have HOPE knowing this?

so I cry.

I know families with children that never made it to their 1st birthday. AND families with children that are growing but are basically "stuck" as an infant, not talking or walking. Then there are families with children that appeared very healthy at birth and developed normally until their first seizure, then die only months later. AND theres families with children that had a very rough beginning but then stabilized some once they were a little older. AND families with children that started out with a rough beginning, and continue living inpatient for most of their lives, getting one infection after another...and still fighting...they are all still fighting.

And many families like ours...

"He looks to healthy" to have anything serious we were told. "He will grow out of it" we were told. Jack was misdiagnosed twice. At 3, "He has hypotonic Cerebral Palsy" they said. At 4, "He has an unspecified myopathy" we were told... but I never felt either fit really, mostly due to his GI issues. So after many nights googling, I found a parenting board with kiddos that had something called Mito, my heart sank with each and every story I read... I knew this was it. Even though I was told, "He has a less than 1% chance of having Mito based on his normal muscle biopsy" I pushed to see a mito specialist anyway. Finally our son was correctly diagnosed with Mitochondrial Disease, Complexes I+III and IV. By then, Jack was 5 yrs old.

A child born with "issues" but they were only minor in the beginning, nothing early therapy couldn't fix, we were told. But then over the months and then years, his issues have slowly grown into much bigger issues. Life changing symptoms, adding more specialists... every year even more issues and more organ systems affected.

PROGRESSION: cruel.

ALL of our families will experience this.

THERE IS NO CURE.

so one way or another whether it happens slowly or quickly... we're forced to watch our children fall apart. Only able to give supplements in hopes to slow the progression of the disease down.

THERE IS NO CURE.

I don't know how to handle that.

so I cry.

I also don't know how to handle watching so many other families ripped apart by this CRUEL disease. Every day so many are suffering. My heart aches for all our children, being put through so much in their short lives.

These photos only show a handful of painful procedures, therapies, ER visits and Hospital admissions our son has had to experience in his 8 years. AND this isn't even a quarter of what many children and adults with Mitochondrial Disease are put through.

can you imagine this being your child?

Someone you love?

AND my heart aches so for the parents that have had to bury their child... and are now feeling lost. After years of taking care of and loving on them... now cant. Its painful to think about, because this could very well be me one day.

so I cry.

What if this was your child?

Sadly, there are too many precious children that wont make it, that wont be saved in time. But there are so many more that will if we bring awareness and get the same funding as Childhood Cancer research someday. So many families are affected and are suffering. Tell families like ours, we are WORTH A CURE.

PLEASE help spread

Mitochondrial Disease Awareness.

http://www.umdf.org/

blog it, share it!

it can save lives!

Wishing I was back here. . .Hawaii 2011

2011-09-15T21:14:00.000-07:00

This was taken on one of my very last days in Hawaii. I spent the afternoon alone, thats right, alone! Under a crisp white umbrella and this beautiful blue sky...honestly, it felt like heaven. Jeff took the boys to the pool and I was more than happy to take advantage of some time alone in PARADISE.

I got the most amazing photos as I just laid here, this was my view from my towel!

Did I already say HEAVEN?!

OK, maybe I sat there and had a little fun editing these pics on my iPhone apps! Ill stop and get on with my family! But I cant tell you how good that day felt, I so needed a break like that.

Well, naturally the trip started out like this!

Except for 30 mins, Jack slept the entire 5 hours there! whoo-hoo!

This year went a little differently than last. We not only took Jeffs parents (theyve been divorced for years but shared a room anyway) but also 2 cousins! My nephew Austin and my niece Lauren, both 19. Senna was more than thrilled to have a couple kids more her age along. They has such a great time, made some wonderful memories together. I loved seeing the cousins spend time together these days because now that theyre all growing up, with college and jobs, they rarely get to see each other. Just not like the old days.

The Van ride to our Hotel, Jack was still tired! Senna being silly :)

Granny Carol and Logan getting very excited to get to the Hotel!

Jack annoying Logan, who was very hot and hungry and not in any mood!

The trip started out a little crazy because it turns out the hotel DID NOT have our "confirmed rooms" afterall--well should I say, they had the rooms but they kept giving them away as we tried to straighten it out with the managers...but thats a long story! Basically we stood there for 4 hours waiting to get settled! Then once we got rooms, they only had 1 bed in them! so we had to sleep on cots a couple nights until they could move us, AWFUL.

So what do you do when you finally get checked-in?

JUMP IN THE POOL!

The view from our room :) FUN!

Caught Jack in action!

Lauren always has a lot of fun with our little guy :)

Well she has a lot of fun with all her cousins! She's very easy going, a joy to take on our vacations.

Easton getting her good!

This was the first time Austin was able to join us! He's my younger sisters boy.

We did or best to set up a make-shift hospital for Jack!

You can see we had R2-D2 along! Our portable and plane-friendly oxygen concentrator. This is what the kids nicknamed it! It was so much easier saying R2 than the oxygen thingy :) Everything went pretty well except for the feeding bag leak halfway into our trip! All the formula/stomach contents spilled on the carpet next to Jacks bed. Its was the worse most rotten smell ever. AND we had to live with it until we checked out 5 days later! Poor kids, gagged everytime they entered our room. Wondering what house cleaning thought--or worse the next family that checked in! ewwwww, sorry.

We headed to the famous International Market in Honolulu to pick up some fun trinkets, and to teach Austin how to bargain with the locals! This tree has been here for ages, I remember coming here when I was a kid and seeing it. A lot of names are written on it.

After writing on the tree, the kids added their names to the stones, it will be interesting if it will still be there when we come back (not sure it was OK to write there)

We went across the street to the famous Waikiki Beach and found this little guy :) Check him out in action! I could of stayed and watched him all day. It was so amazing to watch him use that board, Jack wasnt even sitting up at the that age! He couldnt of been walking long. Definitely will be a surfer for sure!

The next night was Laurens 19th Birthday, so we walked to Red Lobster to celebrate. We realized that for 3 years in a row weve had Lauren along for our family vacations! And celebrated her birthday with her.

Jack resting with his mom and dad :)

Off to the Hotels own Lagoon for some swimming and viewing the fish!

Jack wasnt too happy about it since the water here was sooo cold. Not sure why its so much colder than the ocean. But he really didnt enjoy it!

He preferred the HOT TUB! Logan being silly with his swim shirt!

I love how much he loves her :)

We took our annual trip to Hanauma Bay for some snorkeling, so much fun!

The whole gang except for Jeff's Dad, Bob. He opted to stay back at the pool!

Jack and I waiting our turn to watch the mandatory "dont touch the sea life" video!

Easton. I bought a cheap FUGI underwater camera so I could take some of the fish snorkeling.

ACKKKK! thats me--HEY, NO ONE looks good with these things in their mouths!

BUT I did get some amazing photos! You cant tell by looking at these pics BUT the second one down was more than 2 ft long! I loved every minute down there. I would of loaded a video clip but it wouldnt load here, too big of a file because its in HD I guess.

Not the greatest camera but it definitely served its purpose. I got some great shots of the fish and my kiddos :) all without worrying whether Ill get my NICE cameras wet!

We also got some NIGHT swimming in too!

NO, I didnt let my kids actually swim out into the dark sea but they had a great time in the waves.

The older kids sat on the beach every night talking about older kid stuff! and playing "words with friends with us back at the hotel!

The girls being adorable girls! OH how nice it would be to wear such fun shorts again :)

Back for more swimming, He-He, LOGAN, pull-up your swim trunks please!!!

Jack doing a very silly dance to entertain us all!

Granny tickles good!

This was the scene every morning as we walked across the street for breakfast!

WE LOVE this place!

Jeff with his Dad, Bob. Round Table pizza was the cheapest place we could find with as many people we had! They both opted for CJ's, NY style sandwiches next door though :)

One day we rented a 12 passenger van and took it for a drive to explore the island! We were looking for Turtle Beach, but kinds got lost, really lost.

But even when youre lost, you get hungry! My beautiful boys :)

Me and my Easton.

Drink your COKE Jack! Its mighty HOT outside!

But on our way to look for the Turtles, we found this beach! Waimea Beach on the Northshore.

One HAPPY boy!!

Ill do anything to get out of that Van!

Not sure if you can see these people jumping off the cliff there!

Easton getting swallowed up in the rough waves!

HELP! those waves look harmless but they can really take you under! The girls are enjoying this!

Logan trying to stay upright :)

Cant you just hear the laughter?! Love it!

MOVE JACK, youre in the danger zone!

He did get a mouth full of sand!

Awww, and it ends well!

I love when I catch a moments like this :)

Being silly as usual!

My BIG handsome boy!

Jack and Daddy having a great time running from the waves,

I probably snapped 50 shots of these 2 :)

GOT to get cleaned up before we get in the van kiddos!

BUT Its COLD!

Its really COLD!!

So in search of the Turtles, we were directed to this beach--NO TURTLES! But boy am I glad we came anyways because the sand was the softest we had ever felt!

Just a beautiful Beach, Sunset Beach, also on the North Shore.

Even your feet are cute Jack!

I had Jack pose with this "RESCUE" board, it fits perfectly!

Jack looked so cute standing there...my handsome surfer dude :)

The waves a were a bit calmer there too.

WE FOUND THE TURTLES!

Finally!

They rope them off so youre not to touch them. They had a crazy Turtle lady there to be sure of it!

Senna wearing her glasses because not more than a few days into our trip, she got PINK EYE! She had to see a Dr. while we were there. Not fun to have to give up her contacts and wear glasses for several days, she was NOT happy about it either!

This picture looks like a painting! Too bad I took it with my Canon G12 and not my Canon SLR, not as sharp but its still stunning!

They looked very much like all the rocks on the beach!

Our last night in Hawaii, I ~~forced~~ had all the kids to stand by their name in the sand

They were hungry and wasnt in any mood for photos, so I was being annoying mom!

LOVE, LOVE, LOVE.

Waiting to get into The Tropics again, love that place! Right on the beach, watching the sunset go down, just beautiful.

FUN WITH DAD!

The girls were chasing all the kids around :)

Same photo as above but I wanted you to see it close up, so sweet of Jack looking up at Lauren :)

Until next year HAWAII...I hope anyways!

(I should of warned you on all the pics, but I had 1500 to choose from!

definitely the annoying camera woman!)

18 years ago, we said "I DO". . .

2011-09-11T23:13:00.000-07:00

{ September 11th, 1993, Jeff and I were married }

It's hard to believe its been 18 years, neither one of us could ever of imagined that special day so long ago...that in the years ahead, we would experience so much joy...and heartbreak.

Most of us know, being married as long as we have isn't too common these days. It's strange to feel like we're accomplishing anything extraordinary. But it hasn't been without some bumps and bruises along the way.

Knowing no relationship is perfect, Ive learned you have to nurture it and make changes as the years go by. Now with our children growing up, and Senna soon leaving the nest, we will again need to adjust to new beginnings with each other and as a family. It hasn't been easy to stay connected as a couple over the years, with Jeff's demanding work hours and while raising 4 children, 1 of those with special needs. It certainly has put extra stresses on our relationship.

{we are so blessed}

I really don't have any great advice for a long and happy marriage, but I think learning to seperate yourself from being parents and still remaining a "couple" is always difficult in a marriage, they equally need attention...and often the kids needs are put first.

For me its having Jeff by my side at the end of the night, sharing our day together, surrounded by the warmth of love and the sound of laughter. I found this will keep whatever you have left in you that day, going! OH and always my dads advice, "never stay mad for more than 15 minutes!" (My parents have been married for over 50 years, so I think he's proven it works!)

Certainly 9/11 will always have a different meaning to us...but its always a bit hard to celebrate each year knowing so many lost their lives on this day. Watching the news coverage of all those tragic events again was difficult. Our thoughts and prayers to all the victims and their families.

Sorry Kiddies, it's Back - 2 - School!

2011-09-08T13:05:00.000-07:00

{our tough guy, 3rd grader!}

Summer went by too quickly, as it always does... Jack is a BIG 3rd grader this year, is that possible? As you can see he was pretty excited about his 1st day :) Sadly, a couple days before school started I got a call from his 3rd grade teacher saying she wasnt going to be his teacher afterall this year, that she took on another position. I was disappointed since Jacks class was suppose to loop into her class a 2nd year for 3rd grade. She knows him so well so it was going to work our perfectly. But the good news is the Teacher he did get was a student teacher that was there most of his 2nd grade class so she also knows him very well.

AND Jack always gets the HOT teachers! he-he.

Meet Ms. Whitney! Im sure he's in good hands.

{6th grader}

As a BIG 6th grader, this will be Logans last year in Elementary School. A little sad for Jack since he just LOVES having his big brother there with him. The first day was a little crazy for him because the Nurse was sending a lot of 6th grade kiddos home that didnt have their "REQUIRED" TDAP shot. OOPS, I thought Logan was all up to date so I told her yes...ahhh, but no I found out he hadnt had it. It was one they added in July. So we had to rush over to the peds office that afternoon. He was less than thrilled about that! I kept thinking about all those kids in their shiny new shoes and back to school clothes and then having to be sent home immediately once they got there! well that SUCKS.

Logan was very happy to find out that many of his friends also got the same teacher. These boys have been best buddies since 1st grade. Dont you just love this age, you know BEFORE they think theyre all that!

{9th grader}

I can hardly believe I have 2 High Schoolers this year!

Easton is a Freshmen and started at Mt. Rainier High School with his Sister. Due to his high test scores from middle School, he found out he got 4 honor classes this year, Im praying he can keep up his grades! He will still have his 504 plan due to his OCD/anxiety disorder. Looks like Ill have to go over it again at this school.

{11th grader}

AND Senna is a Junior this year, does this mean our little girl graduates next year??! yikes. My babies are all growing up too fast :( She will be driving her and her brother to school this year. This means instead of 3 schools, and 3 different start and end times, I will only have 1 school to drive back and forth to!!! YAY. Also I have a 1 year break from middle school too, NICE.

I WISH I could say we havent seen any of these days...but I cant. Jack is now on day 4 of school and he already has 2 . Tummy troubles and lots of fatigue. Its hard to believe this is the same boy, his 2nd day of school from the picture above looking so happy and energetic his 1st day. But thats how Mito is, one day our kids look great and the next day, very puny.

He's also starting the 3rd grade in pull-ups this year. Im so sad about this but he feels much more confident wearing them, rather than risk having his pants get wet and all his classmates see it. So we do what we have to.

He has the Urodynamics study soon and I keep going back and forth on whether to put him through it. It will be a painful procedure so Im just not sure its worth it. Unfortunately the child needs to awake and alert for this testing so theres really not much they can do to make it go smoother for the child. Its a very invasive test and with hs sensory issues and pain intolerance, Im expecting this maybe very traumatic for him. I just have to decide if the info we get from this will change anything? I just dont know what the right decision is.

Im going to email the urologist today and ask her a few more questions. I hate to cancel this appt since it took forever to get it and will I kick myself later for not having it done when it could of given us the information we need to treat him? I just have to do whats best for our little guy...I hate not knowing what to do.

BUT for now, Im just hoping the little plaid

backpack on the end makes it each morning!

REMEMBER it's

MITOCHONDRIAL DISEASE

AWARENESS

this month!

MORE to COME!

Gone in an instant . . .

2011-08-28T23:29:00.001-07:00

This isnt the blog post I was suppose to write tonight... it doesnt have

anything to do with our boy, but another boy we know.

It was a beautiful day and he set out to go swimming with friends, he was athletic and a strong swimmer but that made no difference to the Wenatchee River on Saturday afternoon. As he tried to swim across, he was no match for the strong currents, they swept him away.

He was 18 and had just graduated in June from the same High School my daughter attends. He was Sennas good friends older brother. She texted Senna early this morning saying her brother had been missing for over 16 hours, that the search for him would resume at 7am. She sounded hopeful, and felt there was a good chance that he made it to the banks of the river and was just lost perhaps...

Later this afternoon, search teams found his body near some rocks down the river, he drowned.

A handsome young man with so much life ahead of him...now gone.

He was a good kid and very protective of his sister, they were very close. This was her only sibling, he was her hero. I can only imagine how her life has now been turned upside down. Starting school this coming week will be very difficult without her brother. Difficult for everyone that knew and loved him.

Senna and I have been in tears all day, just devastated. We just never know how long we have with our children...healthy or not. Im giving extra hugs and "I love you's" tonight.

PLEASE pray for this family and this young girl who now has to learn to live without her beloved brother in her life. So heartbreaking.

ALSO...

Its been a rough summer for many of our kiddos :(

(click on their names)

PRAYERS for the families of the 2 Mito warriors that earned their wings this month, beautiful Jaiden and baby Lachlan.

There are many Mito kiddos and families that need our extra prayers tonight...

Averie, is out of her coma but is still struggling on Bipap fulltime, please pray she makes a full recovery. Brent, has been struggling and inpatient, he recently started chemo, pray he responds quickly and his labs improve. Calvin, recently had a big seizure, he will go inpatient soon to see if they can find a way to help him. He's also having more GI problems. Noah, was admitted to a hospice in-home care program and continues to have higher liver labs. Pray Nathan, continues to do well with his temporary GI stimulator and the permanent one goes in smoothly in October! Alex, will begin the new Mito Trial Drug, EPI-743. PRAY this drug doesnt cause any allergic reaction and it improves his health!

Im sure I left some children out, all our babies need prayers!

ALSO, please put in a prayer for these amazing Moms that are struggling to heal from recently losing their mito angels.... Michelle, grieving the 6 month angelversary of losing her beautiful Mags. Jessica, missing her Princess Eithene

and Jen, deeply missing her brave Zach.

THANKS FOR ALL

YOUR PRAYERS!!!

we NEED a CURE!

(Sorry Ive been absent here, been real busy with back to school stuff, Jack medical stuff and just coming back from our vacation. I will update soon, I promise!)