First Steps...

I remember this moment like it was yesterday... dragging his feet back and forth making a pattern in the those jagged rocks. Jack was just 21 months old then and only beginning to bear weight on those weak little legs on his. I remember wondering how long it would be until we saw those shaky first steps, will it happen before his 2nd Birthday, his 3rd? when will we see him run like a typical toddler or play a good game of tag with his brothers...

But never did the thought run through my head, once gained that he would ever lose these skills or find himself still struggling years later... and why would I, all we knew at that time is he was born with low tone, had some sensory and feeding issues, but with some therapy our son would eventually catch up and everything would be ok...sigh, so why are we here, years later with this devastating diagnoses and a feeding tube keeping him alive...is it too late to go back to the "everything would be ok" part?

Jack has had a rough few days... falling down several times, and even injuring his right foot Sunday evening. Monday morning he could barely walk on it, needing to be carried to his classroom. I wanted to keep him home but losing so many school days because of the Flu last week, I felt it was too important to see if things improved over the day. Thankfully he was able to hobble around enough to stay in class. Today he fell again at school, doing the splits during recess and landing him in the nurses office covered in mud. Its like we're seeing a new pattern with him, not as stable and having too many falls, especially at school.

I guess this just brings us back to our appts. we had last week and what I was told we may expect in the future regarding Jacks mobility... Im really not sure what to make of it. Is this entirely the hip thing or more so a balance problem. Maybe both. I watched him carefully tonight, and notice him losing his footing more than once. In the past week, he's come up to me saying, "I feel funny" and has even uttered the word dizzy a couple times but I'm not sure this is related or not.

I received the PT's outpatient note in the mail today... Besides her mentioning the powerchair again and his obvious low tone, she added a lot of numbers of measurements that didnt make a lot of sense to me. I'm adding few assessments she made that day-

"Jack's gait exibits a decreased stance on the left with a slight increase in the internal rotation on the left. He demostrates decreased endurance with his walking"  On decending stairs, with a step to step pattern, almost falling and catching his feet with each step."

"He demonstrates a painful left hip, especially at the end ranges of motion. He has lax joints throughout. Jack demonstrates decreased strength, especially around the hip and knees today. Standing balance is considerably challenging for Jack. Jack stands with a sway back, bilateral knee hyperextension, slight calcaneal valgus with mild pronation.

I still dont know much about the therapy they wrote the referral for, as Im not sure they will have any sessions available for late afternoons. I cant have him miss several school hours. Im still waiting to see if he'll be put on a waiting list or what they will have available to fit his school schedule. Both the Physiatrist and PT believes therapy is the only answer, to strengthen his hips and knees to avoid pain and possibly these falls. I pray theyre right, its not easy watching him struggle with a milestone I thought we would never have to revisit.

BIG appointments, BIG disappointment...

SO the BIG TWO came today... Ive been anxiously waiting for these two appts. for weeks.  We got up early this morning and headed to Seattle Childrens for Jack's Physical Therapist Eval and Physiatry appointment.  We we're really hoping to get some answers to whats going on with his legs/hip problem, where he occassionally wakes up in the morning and cant bear weight.

On the way there Jack couldnt even keep his eyes open, he was acting off, and I swear his lips looked a dusky gray/blue, he just didnt look good and it concerned me. I was prayed once we got to the Hospital, he would perk up and be able to perform!  AND thankfully he did...

(Oh, forgive the quality of the following photos, these are snap shots of the video I took with my "FLIP" video camera)

The first appt was with a real nice therapist... and very "kid friendly" Great! She did the usual stuff, asked Jack many questions, tested his strength, took measurements of his legs, hips, ect..., then watched him navigate the stairs, timed him getting up and off the floor and lastly, he walked and run for her.

Oh and this was weird... do you see that guy in the background? He literally starred at us the entire appt! ahhh, I dont know why, uncomfortable...

So what did we learn... well not much more than I already knew. She told me his hips were real weak, his hamstrings tight, he was quite flexible! yep. and when he walked it looked as though he was in pain, walking stiffly and with a slight limp. Ive always thought Jack had an abnormal gait, he does walk stiff and he looks a bit uncomfortable. He doesnt walk in a straight line either but more in a jig-jag pattern, not drunk like but slowly swayed back and forth down the hallway.

The therapist could see his left foot slightly turning in, and felt this was due to his hip rotating in. The sad thing about it she said, this type of problem is very hard to treat. Its all due to the weakness he has in his trunk, hips and those loose joints.

We talked about getting him another pair of Orthotics (he outgrew the last pair a yr ago) She was thinking this might give him some extra support. AND took some measurements that showed the balls of his feet are angled out, showing he puts pressure there. He pronates some but not enough to collapes his arch. BUT warned me that the Physiatrist we were about to meet wasnt pro-orthotics and will say Jack doesnt need them!

So have you looked into a powerchair yet...  this caught me off guard, I wasnt expecting that one. She felt because of his weakness and maybe continuing problems with his hips, ect...that this might be a good idea to look into now. AND said, "you know Jack will want independence soon"   Yeah, we know that and this was the original concern back when it was time to order him the adaptive stroller in 2007. At the time, he was only 5 yrs old and I felt that was just too much chair for him then, he wasnt able to manually push himself around and I didnt want a big, heavy powerchair to lift in and out of the car. SO I really felt the Convaid Scout was the best fit, and Im still happy with our decision. I love this stroller! Its easy to fold up and its everything we need right now.

She said,  "I just need to remind me that it can take up to a year to get a powerchair approved and delivered so if I felt anytime soon thats what Jack needs, to start the process ASAP"  But man, its a huge mental hurdle for any parent to get over... our child needing a wheelchair? I mean...really? this is where we're heading?. ..I know this may change in the next year or so, if he continues to get weaker or gets tired of being pushed and needs something for school, then we will have to order something that fits his needs better. Its tough, but Ill cross that bridge when I come to it.

SO off to the next appt... weve never met this Dr. Jacks first Physiatrist was at Mary Bridges Childrens Hospital. We liked him a lot, despite him being so convinced at 4 yrs old, he had Hypotonic Cerebal Palsly.  I never did feel it fit, but he kept saying, but most kids with CP have feeding tubes...OK?  He was great though, loved Jack and was very warm. But since then, we've switched all of Jacks specialists to Seattle Childrens Drs., so here we are.

But I wasnt instantly in love with this Dr. She definately wasnt the warm and fuzzy type, more of straight-laced, by the book Physician...OK, give her a chance! She asked me what seemed like a million questions and then examined Jack, up and down. She said the same thing, his hips are quite weak and the pain could be from rotation. AND then she said-- "I dont think he needs orthotics" LOL, just what the PT said she would say!

Next an xray... to be sure nothing else was going on. She didnt think it would show anything, and she was right, the xrays looked good.

So what about Therapy... this might help, she said. Thinking strengthening his trunk and hips could keep his leftside from rotating in. She wrote up a referral to Childrens Therapy Center, its just a few miles from our home. Weve already had many sessions there, since Jack was 3 yrs old, including the countless $$$ we spent for the feeding therapy with the best feeding therapist in the NW. But even the "feeding Guru" couldnt get this kid to eat! So we stopped going, it felt like a big waste of time and $. Jack also has had SIOT (Sensory Integration Occupational Therapy) there too, that did nothing to get him to eat or calm those sensory meltdowns he was having then either, he was just having way too much fun swinging ect... AND  Dang it, I want to see tears if Im paying that kind of money! LOL.

So I guess this is the plan... but starting up there again reminds me they will want to do another big eval...even though he just had one, theyll say we need to do our own--I know, so they can charge our insurance that fat $400.00! But this might be what we need right now, they do have access to a pool. Jack did so well in aquatics therapy when he was 5, but the $400 ($75 out of pocket) everytime he put his big toe in the water for 45 mins. was just too much for us to afford! so again stopped going. Ill give them a call and see what kind of wait it is to get him in.

SO here we are with the hip thing... not any real solution, just therapy and praying he can manage this OK...kinda stinks, not that I wanted to see something on his xrays but I dont feel weve made any head way on making him more comfortable. But I have to say it was so good to have a fresh set of eyes on him again.

(Whew, I dont think anyone will read all my ramblings, but if you made it this far, THANKS!)  

H1N1 update...

Well, its definately here!  Masks and all! I did decide Easton was ready to go back to school this morning...but not more than a couple hours later, the nurse said he needed to be picked up because he had a temp of 99.9...well great, he had no fever the day before. Not that 99.9 is a "real" fever but I guess close enough since everyone has been sick. The new rule with the swine flu in our school district is anything over 99.0. So had to go retrieve him.

So just as I was picking up Easton, Senna calls...ahhh, my headache is sooo bad I cant even concentrate! Well, theyve all had headaches with this flu and so far Senna has escaped from getting it. So we'll see how she feels tomorrow, but Im sure its just a matter of time she starts to come down with all the symptoms. They couldnt of ALL got it at the same time, NOoooo.

Logan seemed to of gotten better...a couple days ago but then got suddenly worse, spiked a fever to 102.8 and developed an awful sounding deep cough. Anything over 4 days with fever, they want to see the child. So off we went for an xray this afternoon to check for a secondary infection. Whew, NO pneumonia, his chest xray was clear. His PED says it appears he developed something viral on top of the Flu.  Poor kid, he definately feels like crud today.

AND either one of them cared for the cutesy Disney mask...both complaining that they couldnt get any air. Despite all the sideways looks we were getting, and the empty elevator we took (lol, no hard feelings!) I know everyone appreciated me making them keep them on!

The Boys thought it was real cool to ride the Hospital shuttle over to radiology! Jack was too funny with the driver, he made sure he told him he caught him reading a book earlier! He says--"so thats what you do, huh?" The guy just chuckled and said-- "yep, Ive read a lot of books on the job!" lol.

My silly boy, always finding something humerous to say despite not feeling 100%.

Jack, well.... he's doing OK, no fever today!  Just  tummy upset and headache this morning. So go figure, the most complicated kid with the underlying health condition, DID great! I guess this just proves why so many healthy kids get so sick with this one, Logan is by far my healthiest kid and he had it the worst. Of course Im probably jinxing myself by just typing that...our situation seems to change from hour to hour, day to day. Praying that something much worst isnt brewing in Jacks little body and it shows up later this week...OR any of the other kids for that matter! 

In case anyone is wondering....the most common symptoms that they all got were--Fever from 99.5--102.8, Headache was a big one, they all complained of a bad headache, stomach upset, diarrhea, sore throat and of course, Logans nasty mucousy cough. Jeff had an awful cold a couple weeks ago and its lingering on but neither of us have FLU symptoms (please no!)

So...Im pretty much done with all this! I just want the piggy to LEAVE our house NOW!

SO whats next?  Jack has his BIG FULL PT evaluation and Physiatry appt tomorrow morning at Seattle Childrens, so two important appts. I dont want to reschedule! It will be so nice to have a fresh set of eyes on him. I need to figure out why that leftside hurts so and he occassionally wakes up not being able to bear weight. Hopefully someone can tell me whats going on. So lets just pray he's well, NO fever and is in a good mood tomorrow morning!

Losing Gavin...

Up late again...  thinking about little Gavin   http://www.gavinowens.com/   ...Im heartbroken to learn he earned his angel wings at 10:43 pm tonight, after a courageous 3 year battle with the effects of Mitochondrial Disease. He was such a brave little warrior that was determined to prove how much he wanted to live, right up until the very end. He touched and impacted more lives than anyone could imagine...so how does one get so attached to a child theyve never met?

Beside too many tears, so many thoughts are running through my head tonight...

You follow these littleones... you find yourself checking up on them several times a week, praying the new meds help, praying that next procedure goes smoothly, praying their next admission is short...you cant help but get attached. You begin to feel a strong connection to these families.

I dont think my family or friends can begin to understand why I allow myself to become so emotionally attached to these children. My sister worries this isnt healthy for me to watch other children struggling with the same disease as my sons. And expressed her concern when she knew I would be attending a service for another little boy that lost his life to Mito last month. But how could she understand, she doesnt know what its like to be in my shoes, nor should I expect her too. You have to be right here, you have to know what it feels like not to look ahead, only being expected to live day to day because youve been told your precious child has a very unpredictable and often fatal disease.

I know its not easy to watch these beautiful children that Ive learned to love, struggle and possibly lose their life, especially to Mito... but its these connections that help me cope... that understand the everyday fears I have. Im thankful for these families, not for what they have to endure but by allowing to share their journey with me, it gives me the strength and the courage to find hope in those days that feel so hopeless...

For Karen, Adam and Madi, Im praying for healing as you move forward in your journey surrounded by immeasurable love and support.... an inspiration to the many of us that was never honored to have met Gavin but followed him week to week, hour to hour, minute to minute... thank you for sharing your beautiful boy with all of us. Im comforted in knowing he's at peace tonight, free from his failing body and welcomed by the loving arms of Jesus... you will be reunited once again...

PLEASE continue to pray for all families
affected by Mitochondrial Disease...

Update on our H1N1 scare...

I DONT KNOW!

No seriously, if this is  "IT" I would think the boys temps would be much higher? right? The highest temp Ive seen is nearly 102, but for the most part, we're only see 100-101 here. Their symptoms include, low grade fever, bad headaches, diarrhea and sore throat. Jack has a bit of a dry cough but nothing much there even...so maybe this is just the regular ol' flu or possibly a mild case of H1N1? if there is such a thing...Jack did get his seasonal flu shot but I guess it doesnt cover every strain. So for now Im just waiting it out to see how they do the rest of the weekend, hopefully if their fever free I can send them back to school next week...Im hoping we just dodged that bullet! AND I can concentrate on trying to find the vaccine for all of them next week!

Grant a special wish to a special little boy...

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please, let's make this little warrior's wish come true!

Send cards to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, Mi 48178

Lets see how many cards

we can get together for this brave little boy.

Thank You and God Bless.

(Please consider posting this very urgent message to your blogs)

Thanks Jen, I hope he's well enough to enjoy

this special day with his family...

MRI/MRS results...you know its not good when...

your childs busy Mitochondrial Dr. calls you in the evening...well lets start off with some good news, Jack's MRI was normal...BUT his MRS was clearly not. 

SO most of us know what a MRI is but what is a MRS? Its a a technique called muscle phosphorus magnetic resonance spectroscopy (MRS) can measure levels of phosphocreatine and ATP (which are often depleted in muscles affected by mitochondrial disease).

Dr S. said Jacks MRS showed a build up of Lactate through out his brain. SO what does that mean? Well its not good news he told me but said there wasnt enough evidence to say what this means in terms of Jacks disease progression. Although he did say that kids with a much more severe form of Mitochondrial Disease can have very high peaks of of Lactate shown on their scans.  

I asked Dr S. if this could be the reason for the occasional slurred speech and he said it could be but more so its evidence indicating this disease is affecting him nuerologically. The short answer is, basically its confirming a disruption in his respiratory chain, resulting in this build up on his brain.

Sigh...I know this doesnt change anything, he's still the little boy I had yesterday...but its just another awful reminder that our son has this cruel disease and now we can actually see it on his brain. Ive always said if we ever lose the Jack we know, meaning possibly his speech and his playful personality, Im not sure how I could handle that...besides losing him altogether, thats my greatest fear...

ON another note...Senna blacked out again this morning while getting ready for school. She's been experiencing daily dizziness and occasional fainting spells for several months now. Last week she was diagnosed with Orthostatic Hypotension. Meaning her blood pressure either drops more than 20mmHg systolic or 10mmHg diastolic from a lying to standing position. The troubling thing is she wasnt changing positions when she passed out this morning but since she hadnt eaten breakfast yet, her PED thinks this was likely the reason. According to her Dr., apparently its not uncommon with thinly built teens, especially girls. The only real treatment is to be sure she stays well hydrated and doesnt go too long without eating. 

The poor girl was in tears, these black-outs really scare her. I did let her stay home from school since she had a headache and was so tired. I quickly set up a careplan with the schools nurse today in case this ever happens during class, they will know whats going on.

Just a lot on my mind tonight ... I know we're very blessed that Jack is doing so well right now and there are so many other families I know that are struggling so much more than we are tonight...but I cant help but think how nice it would be to just wake up one morning and not once think about Mito or any other health problem ailing our family right now.

please put in an extra prayer for all of Jacks mito friends tonight.

This dear family desperately needs yours now, we love you Gavin.

BOO!

Another Halloween has come and gone...now on to Christmas. The boys Elementary School had their annual Harvest costume parade (their NOT allowed to call it Halloween) They all walk to the large Nursing home a few blocks away. The elderly folks there look forward to this every year. However, Jack didnt participate with his class since he wasnt able to make the walk without tiring so he stayed back in a classroom with other students that didnt go (or wasnt allowed to because of their religion)

As for Logan's get-up...The night before I decided to sew this MO-HAWK wig to the skeleton mask, it worked. We never put much thought into our costumes these days now that the kids are getting older, they dont seem to care much what they go as!

Im not sure Jack cared much that he was missing out on the parade...but maybe a bit disappointed that he didnt get to show off a cool costume like all his friends.

SO we headed out to my Parents farm and then to my sisters house for the weekend. The boys got dressed and Senna was suppose to be a "dead prom queen"...but, ahhhh...she ended up looking more like just a girl going to a prom.  I guess she wasnt into caking a bunch of white make-up on, so went as she was. Oh well, its not like she trick-or-treats anyway.

Jack couldnt wait to be an "ARMY GUY" again! Every year he's an army guy! Of course until the make-up was just too itchy and then later begged me to clean it off.

The boys goofed around for awhile before we headed out for the night...

AND this one needs NO explanation! Be nice Jack, sheesh!

My sister and I stayed up most of Friday night putting together her annual Haunted House. This time in her living room for all the trick-or-treaters to enjoy for Saturday night. And when I say Haunted House, I dont mean those cute little scarecrows and friendly looking witches! Its just NOT a haunted house without creepy ghouls, the crawling Grudge girl and a life size animated "Jason" and "Hannibal"! It turned out great, although not every kid was brave enough to enter the house!

Mom came to check it out too!

Easton was once again "Scream"  This will be the 3rd year in a row! Oh well, like I said, they dont care much what they are.

So, until next year kiddies...

Jack's 1st Halloween...oh, and I had to add this one, you can see the "army guy" theme has been a favorite around here for years!

The Pumpkin Patch and the Porta Potty!

Ok...Im a little behind on my blogging so forgive me! Its been a crazy week....So here we are, I finally was able to get all 4 kids in the car and to a Pumpkin Farm! It use to be a annual event but as the kids have grown, they dont get as excited as us crazy moms do with our loaded cameras!

My Logan, my funny, silly Logan...So as we finally found a good patch of Pumpkins to take pictures without a ton of kids in the background...I hear Jack say "Ive gotta go!" Grrrr...so off to the PORTA Potties we go! where No parent wants their kid to enter, yuck! Well after we all waited our turn in a long line of several other squirmy kiddos...

As we walk back to the patch, Logan begins saying "I cant believe that they had that bar soap"  I was like huh?, I didnt see any bar soap...  He says "yeah, it didnt even get my hands clean, blah, blah, blah..." Just then Easton stops us and says "OH MY GOD, you didnt think that disc in the Urinal was bar soap did you?!"  LOL...you can imagine the look on Logan's face! "well I didnt know" We were all laughing so hard as we pictured Logan trying to slather up with that stinky urinal disc!  The poor kid got so embarrassed, I guess he thought that the urinal was a sink! (without running water??!)  Well at least we had a funny story to tell when we got home...I never thought I had to warn my boys this wasnt soap! Poor Logan, my sweet silly Logan.

Thankfully Jack was able to hobble around the patch afterall that day, walking most of the time we were there.

Being his silly self...

and NOT soo cute when he had a little tantrum at the corn maze entrance!

Favoring his right leg, as the stupid left one still hurt.

AND boy was it fun later, trying to get all that mud off our fancy stroller!

NOTE to self... be sure to check what all the kids are wearing BEFORE getting in the car and heading out to a Pumpkin Patch! Senna, Flip-Flops are NOT Pumpkin Patch wear! Lets just say she was a bit embarrassed once her sandal got stuck in all that mudd through the corn maze. AND Im sure she didnt enjoy any of snickering as others walked by her! BUT dont worry, as long as she could still text and play with her IPOD touch the whole way she was just fine! Thats my girl :)

Jack loved the white ghost pumpkins the best.

AND Easton picked these ugly pumpkins to carve...but dumb me, I found out you cant carve knuckleheads!! SO he was more than a little disappointed when when we got home and was all excited to start carving :(  Sorry Easton, next time we'll stick to the good ol' normal ones!

It was good day overall...So it was cold and muddy and Jack had a bum leg with an attitude! Senna had mud between all her toes while Easton picked the wrong pumpkin...oh not to mention, Logan ended up with more germs on his little body than I anyone could imagine! BUT I have to say it was so good to be able to take my littleones to the farm once again.

OH the memories...my poor little sensory boy was so upset to be plunked down on that wet ground with those cold pumpkins! Mind you he was 19 months and was no where close to being able to walk yet...we would have to wait another 11 mos. for that milestone!  Then theres my Logan, you can even see then he was eager to please me and tried desperately to save the shot anyway, thats my boy :)

An MRI, with a dash of SHAKIRA!

Whew, what  day... Jack had his MRI this morning and I have to say it went GREAT! really GREAT! Our brave boy amazed us once again!

The sleep nurse, as she introduced herself to Jack came in and we went over his medical history, diagnoses ect... Then I asked her what he had had in the past as far as sedation goes and it turns out Jack has never had Propoful (intervenous type) at Seattle Children's, only the inhalent type anesthesia, (Desflurane) for his procedures.

Well maybe this explains why he wakes up thrashing like a rabid dog, screaming, kicking and is completely delusional! His last scope was just awful. He actually lost all control of his bowels (they accidently handed me him without a diaper, yikes) Anyways, there was so much screaming and kicking I couldnt even keep him from falling off my lap. I begged for them to let us leave!  Thankfully he had a G-tube so they were ok for us to leave early...that and Im amost positive we were terrifying the other little patients happily licking their popsicles in recovery!

Anyway although I know theres some concern to use Propoful for Mito patients, I asked her if we could do it this time instead of the gas type inhalent, considering its such a short procedure and I know he's done really well with in the past at another Childrens Hospital. Hesitant to say yes, she needed to check with one of the anesthesia Docs that works with Mito patients. Apparently they arent comfortable with Propoful.

Thats when she said, "Hey I think Jacks old enough to do this thing AWAKE!" I was like, HUH? I dont think so...30 minutes, without moving a muscle?! BUT you know, lets see what he thinks and give it a try! Certainly the alternative wasnt looking good!

So then she asks what type of Music he wanted to hear...SO...Maybe she was thinking, a nice little kiddie selection of some type, I know she wasnt thinking SHAKIRA! LOL...ok, normally a 6 yr old boy probably wouldnt be such a fan of her music except that he has a 15 yr old sister! So thats what he wanted, "SHE WOLF" by SHAKIRA, he loves this song (mind you he's never seen this inappropriate  video!)  So with a smile she said she would see if she could make it happen, yeah right, I thought. 

SO we walked into the room and guess what was playing, "SHE WOLF"  Jacks face immediately lit up and we readily got him on that table. Once again the fine staff at Seattle Childrens's wowed my son with their fun personalities and always with such gentleness. Just a note, the song was set to loop over and over again...well that was fun!

Jack did GREAT, once he was all covered up and in place, they explained everything on how he needs to be still, you'll hear some really loud noises but not to worry, you'll be wearing headphones, its like being in a rocketship! ect... Although the last 10 minutes I could tell he was getting antsy and fluttering his eyelids a lot, it turns out he had an itch! BUT dang it, I cant tell you how proud I was! Maybe we'll get some news early next week.

Thanks Girls...you were nothing more than professional today AND once again, lived up to Seattle Children's wonderful reputation!

ON ANOTHER NOTE...an update on Jacks bum leg...its BACK! He awoke this morning barely able to walk again, sigh. So something is definately going on with his leftside, his foot is still turning in. (you can see he was trying to stand at the hospital, above) 

SO I called his PED this afternoon and she said to get in to see a Physiatrist. The problem is he cant get in for that FULL PT eval and the Physiatry Dr until November 11th...so this isnt going to work. Seattle Childrens said to have him go see his Ped as soon as possible for an xray or something, he cant be hobbling around like this for a couple of weeks.

Sadly, Jack was really looking forward to going to the Pumpkin Farm and running through the corn maze...so he ended up crying tonight. Despite telling him I would run him through the maze with his Stroller, he said he wont go unless he could walk. But maybe he'll change his mind tomorrow, poor kiddo. Im just hoping they can figure him out soon so he doesnt have to miss another week of school like he did a couple of weeks ago. OF COURSE, doesnt these things always happen on a Friday...ugh. This might be another long week and a lot of tears...

Thanks EVERYONE For All Your Prayers...

Extra Prayers Needed...

Like many Mito kids right now, they ALL need our prayers to keep them well. But theres one little boy that need extra ones tonight...

Gavin may possibly be the prettiest boy Ive ever laid eyes on, and a real fighter. Please keep his family in your thoughts and prayers.  He is inpatient tonight and fighting hard from the effects of Mitochondrial Disease. May GOD give them strength, peace and comfort. 

So many are praying

for you sweet boy...

MRI tomorrow...

Jack, 3 yrs old, MRI-3.06

I really hate this one. I guess more so the anesthesia part and of course what the results may mean. We need to be at Seattle Childrens by 9am to check in. Naturally we're hoping everything looks good and we see no disease progression or anything concerning this time around, his last one was normal at age 3. 

Jack did worry me some tonight though. He's been having more headaches lately and at about 7pm he came to me crying, saying that the other kids voices were making his head hurt. But then just moments later while he was mumbling to me, he went limp in the chair, it really scared me.  I shook him but he didnt say anything, he only reached out to me and tried to curl up in my lap. He noticed he was slurring his words again but thought it was only because of the headache or just plain fatigue. He's been out ever since. Just really strange, he's rarely that tired to fall asleep this way! SO Im keeping a close eye on him tonight.  He cant be sick for the MRI in the morning, so we'll have to see how he awakes then.

Please put in a prayer for our little guy today...thank you!

A Difficult Day....

He touched the lives of so many...today was the memorial service and tree planting ceremony for one special little boy. It goes without saying what a difficult day this was for his family and friends. Justin lost his battle with Mitochondrial Disease on October 4th.

Ive never been to a childs memorial and pray I wont have to again...It was truly one of the hardest services Ive ever been to. I cant explain the sorrow I felt for Karen and her family. The slideshow of Justin and the many pictures of he and his loving big brother was especially heartbreaking to watch. I couldnt help but sit there and wonder if this will be me someday...and it be my son...its an awful thought and I know I shouldnt even go there but this disease can be so unpredictable and cruel. No child should have to suffer so. My thoughts and prayers are with Karen and her family as they continue to grieve tonight for their beautiful boy.

Please continue to pray for a CURE for all the children and families affected by Mitochondrial Disease.

Science Day with Space Boy...

I volunteered in Jack's 1st grade class today to help with a Science project they were doing. I thought that Jack was going to be very excited to see me because he's talked about me coming for days...but to my surprise, he wasnt himself at all. I caught him many times spacing off in LA-LA Land. It was weird as though he was on another planet, I cant explain it.

Even when he appeared to be participating, he didnt act himself.

Not really looking at anything...but just staring at nothing.

Maybe he was just tired because he slept a good 3 hrs. once he got home, but things like this naturally bother me.

My BABY GIRL turns 15...looking back

 
Senna Nicole Pierce was born at barely 4 lbs. on October 14th, 1994...after a tramatic entrance to the world. I was on bedrest for bleeding, but 5 weeks before my due date, here she was! It wasnt until later we found out there was a tear in the placenta, we were very lucky we didnt lose her...a miracle, she was OK. She was born blue with the cord wrapped tightly around her neck, so they wisked her away before we got a chance to meet our daughter. Once supported she came around quickly and I got to see her about an hour later, but it felt like eternity! Jeff left me to be with her and I had NO idea what was going on...he did later apoligize, he just got so caught up in the nursery getting his first glimpse of his firstborn. When I saw her I was amazed at the head of dark curly hair and all I remember is how tiny she looked...it was amazing, every moment...I had a daughter, a girl...how sweet it was.

Making a barely a peep for a month, she basically just slept and breastfed continuously. We rarely got a chance to see Senna's eyes open and to our excitment as new parents, actually took turns waking her just so we could get to know this little being!  Little did we know, at 5 weeks old all the screaming would start, and it would go on for weeks. It was literally like someone walked in the door in the middle of the night and switched babies on us! She screamed and screamed, nothing satisfied her. If she wasnt eating, she was screaming! Her tiny body pushed us away, not liking to be held close at all. The only thing I could do was carry her in a sling to quiet her. Jeff did find that a low hum helped some too...but it was BAD, really BAD. At that time we did not know our sweet little girl had something called Sensory Integration Disorder 

Her PED continued to offer me that stupid "fussy baby book" and chalked it up to me being a new and unexperienced mom with way too many worries!  It was more than frustrating leaving that office that day, my gut telling me there had to be something wrong with our girl!  Sadly this was before the computer age and trusty Google! We were'nt online, and to think today what I would of done if I was back then! The support and wealth of information I would of received...I felt very alone back then, what was wrong with our baby?...I was convinced that she absolutely hated us!

It wasnt long until we noticed something else about Senna...she had lowtone, Hypotonia. She was floppy and wasnt meeting those precious milestones like my friends babies or my neices and nephew had. Senna was eventually evaled at 13 mos old and thats when we were told about the sensory stuff and the fact she was more like a 6-7 mo. old, gross-motor wise. She started at Birth-to-Three, a developmental therapy center to help her get caught up, getting PT and OT.  We also dealt with FTT, she was so skinny, poor thing. She was weighed the same weight for over a year, and only 18lbs. at her 2 yr well child appt.  They did alot of testing and found nothing wrong with her, she just had major oral aversions. She breastfed pass her 2nd birthday, eating only soup for months! Thankfully...one day she tried a chicken nugget and that was that, she finally started to eat solids! Thanks McDonalds! (never thought I would say that!)

AND caught up she did! Never a crawler but eventually sat up at 10 mos. and walked at 19 mos, but still tiny. Her Ped saying she might reach 5 ft as an adult, HA she's already 5' 4"! I was also told her teeth were so jacked up that she would need to wear braces for years to correct her bite, again wrong! But by now, things were looking good as far as her muscle weakness goes and graduated out of therapy at age 3. She still had those sensory issues though and had trouble with many textures...so many more daily tears to come! 

She took on the role of Big sister quite well, with a little of her own "Senna" teasing of course! Oh and did I mention how much fun I had dressing this kid??!  I LOVED it...Of course I had no clue at the time this would be my last Girl and in the following years I would have to be satisfied shopping on the other side of the store!

One of my most favorite outfits! I couldnt get enough of those Stride Rite high-top Leather shoes! She had them in every color! AND wearing a pair as she tripped and fell on the cement walkway by our apt. at the time. It would be our first experience taking a child to the ER, so several stitches across the forehead later we finally could take her home. She still carries that scar today :)

Feeling she was possibly the most beautiful girl ever...of course looking very sweet here! She was a strong willed toddler, and just knew how to push the limits! But besides all that, she was a funny kid, silly and so very smart! She could recite all her ABC's early on, along with an amazing memory, which she still has today. She had the sweetest sounding laugh, it just made you light up when you heard it.

This picture was one of our favorites and a large one hung on our wall at the time.

Sorry Senna...but these are still some of my favorite snapshots of you! (not sure about this outfit though!)  There were many sides to our girl! And alot of mischief! The picture above actually reminds me of why she always had those hair clips in, SHE CUT her own hair one day AND then went on to cry and beg for me to glue it back on, LOL

Another great Senna moment! This was right about the age that she decided she wanted to be a little gymnast like her friends at school. So what do you tell a child with weak muscles and uncoordination that cant even muster up a somersault? It was clear this wasnt going to happen and as the years went by, she soon found other strengths like Art.  Much like her mom, she was good at this and took pride in all her little drawings.

There was once a time she and Easton got along quite well...today theyre just starting to be more nice to each other again. I guess because she's growing up, and the way she puts it, "He doesnt bug me so much anymore"

This one always cracks me up! What a couple of silly kids...they always loved these photo booths.

Always loved spending time with her cousins, Senna was and still is one of those kids that doesnt follow but leads.  I guess they say thats pretty common with first borns. If she has an opinion she will say it! Whether that means losing a friend or not. She was nothing like me as a child, I was shy and hoped for the most part no one would ever notice me! BUT maybe  being a middle child, explains it!

Sadly by her 3rd brother, Senna gave up on having a sister of her own...with my last ultrasound which revealed yet again another BOY was on its way, she mourned in typical Senna fashion by sulking in our kitchen pantry for an hour. It was a tough day for me as well, knowing how much I loved growing up with sisters, I wanted her to be able to enjoy that relationship as well. Eventually she adjusted to the idea and when she first laid eyes on baby Jack, she was just as excited as if he was wearing pink. However, she still complains about it today and often finds a way to guilt me in getting what she wants! BUT honestly Im convinced that if I had 10 more, they would of ALL been boys!

Senna always loved animals, I dont think there was a animal she didnt fall in love with and wanted to adopt. She begged for years for a puppy of her own after figuring out that hamsters stink and then get out and crawl under the clothes dryer to die! In fact I remember once while we were driving she was nearly 4 at the time and asked me once again when she could have that puppy. I responded with the same ol' same ol', I yelled back to her, "when youre older!" And thats when she quickly told me in that sweet sassy Senna tone of hers, "When Im older?, look at me, Im still in a carseat for godsakes!" lol, this girl was always saying something funny.

BUT to my surprise Jeff finally agreed we could add another pet (not such an animal guy!) I guess our mean barn cat and boring guppies just didnt cut it for Senna to be satisfied with anything else. So just past her 10th Birthday we surprised her with Mya, a little Papillon puppy. She cried tears of joy, with a grin from ear to ear. The look on her face was absolutely priceless that night as we handed over that little furball in her arms.  I dont think Jeff and I will ever forget that moment, never.

By the time of her 12th Birthday, I could already see she was acting much more like a teen than a little girl...and did I mention her love for Halloween and anything scary, including horror movies??! I guess it was meant to be since she was born an October baby. Of course having a Halloween/Birthday party each year through out her life probably helped some!

In one year she went from the12th Birthday picture above... to this!  The days of Myspace and unlimited text with a cell phone of her own was definately here. Welcome to the teen years Mom and Dad!

So now she's 15...wow, I can hardly believe it.

She's really a good kid and we're very proud of her...AND already quick to remind us how soon she'll be able to get that drivers permit! It got me thinking that 16 is just way too young to be handed a 3,000 pound machine! It scares me to death, nevermind that when Jeff and I were her age we felt completely ready to get behind a wheel! But thats just the way it is when you have children of your own. To me, she's still that little girl who had big dreams of making it big someday, always reminding her Dad and I  that she would be able to take care of us once she became famous! And who knows, she still has time!

So we celebrated her Birthday tonight at one of her favorite restraurants. She certainly didnt forget to bring her new IPOD Touch so to tease her brothers by showing them all the cool stuff she could do with it!  It was a good night, and for some reason we were all quite silly at table. Not sure our waitress found us amusing though but we made up for it with a good tip.

But there are days I miss these little faces, wondering how the time has flown by so...After going through all these old photos they bring back some really good memories. I know soon theyll be all grown up and we will no longer hear those small voices giggling throughout the house anymore.  A little sad...and maybe part of me is feeling this way because when I look at this picture...this was before Mitochondrial Disease had changed our lives. Jack was only 4 mos old and at the time, as far as we knew he was just a little floppy...but like his sister with a little therapy, he'd be OK. We had no idea in the following months and years what was to come for our precious son and our family. But as always, I continue to remain hopeful that GOD is looking out for us, I just have to believe we'll all be OK.

Jack's 6 mo. Mito Dr. Follow-up

You can see how thrilled he was to get up early and head to Children's! (not the best photos because these are actually still shots from the video Flipshare! But oh well)

BUT before our appt. with Dr S., his nurse said Jack could get his regular Flu shot now so thats exactly what we did while we waited for him to come in.  Jack was so brave, he picked the arm he wanted and barely said boo...

WELL, until after the shot and she rubbed his arm! BUT he still did pretty good and only fussed for a minute. They still dont have enough vaccine to cover the siblings or parents right now. Even the nurses havent been able to get vaccinated! They have no idea when the Swine Flu vaccine type will become available, Mito kids cant have the flu mist one. I wont do Live vaccines for my kids anyway.

The appt went well. As usual Dr. S. was great with Jack. I get so nervous for these appts, in part knowing that it will be a whole 6 months before we can see him again. I feel under pressure to be sure I address everything I need to before he walks out that door.

We went over a few little new issues with Jack since weve seen him last.  For one the hand tremors and some slurred speech, but I still cant help think this is more of a fatigue thing than anything more serious (I hope)  The shaky hands anyway are certainly getting in the way of Jacks school work. Something Im definately going to have to address with his upcoming IEP meeting next week.

THEN we talked about Jacks recent hip injury or leg pain, or whatever it was! that kept him from bearing weight on his leg for 4 days. He felt this was more of a muscle problem and suggested we might need to up his Levocarnitine if he continues to have trouble with pain.
SO whats the plan... Dr S. felt Jack needed that repeat MRI, mostly for another baseline since he hasnt had one since he was 3 yrs old. BUT also maybe because of these new issues we're seeing. He wants me to keep an eye on the speech stuff for now. His MRI is scheduled for the following Friday, Oct. 23rd.
ALSO to continue to have our Pulmo keep an eye on Jacks CO2 retention, we see him again in Dec.  Dr S. didnt feel his numbers were alarming enough to treat him at this time but will leave that up to his Pulmo. AND he recommended Jack see a Physiatrist to look him over better and determine what he might need for support with that left foot turning in.

Thats about it, it was a rather quick appt. actually...until APRIL.

Meet My Hero...

Logan Gray is our third born, he will be turning 10 this December... funny but shy and you can always get him to smile even when he's in a mood. He's outgoing with those he knows and kind to everyone he meets. And even when he was a wee little boy, girls have always taken to him.  Never learned to ride a trike, a bike or anything with wheels, I still consider him my "typical" developing boy! I was also a third born, not the oldest, not the youngest but somewhere in between the four. Ive always said Logan is the glue that keeps me together. Always managing to brighten up my day.

Last week they had a parents night at the boys school and I saw this hanging in Logan's 4th grade classroom. It read, "Meet My Hero" ...He chose me. I did find what he wrote funny, although it wasnt as funny as his friends one...it read, My Grandma, she has memory loss, but I love her. LOL, too cute!

Thanks Eli's Angels!

Just wanted to share some great books that Jack recently received from a wonderful organization called Eli's Angels.  Please click the link to learn more about how this organization got started and this precious little boy, Eli who lost his battle with Mitochondrial disease Nov. 25th, 2005.
These are just a few gifts weve received since Jack joined the list of many other MIto kids they lovingly support. Jack loves getting these little packages, its just a great way to brighten our littleones days...and somedays they definately need brightening! THANK YOU Eli's Angels :)

A BAD, BAD day...

The day started out BAD...then to...WORSE.
Jack awoke feeling very nauseous and hobbled to the sink to throw up. Its then I could see he wasnt able to bear weight on his left leg, he was holding his thigh then crumbled to the floor in tears. I carried him downstairs to the couch and ran and got a towel and bowl for him to throw up in. Poor kid was miserable and in a lot of pain. This is when I figured we had another school absence again, sigh.

Of course it wasnt long before the boys begun to complain and whine about how I favor him, NO FAIR he gets to miss school, blah, blah, blah, remember when I had a headache and you made me go, blah, blah, blah...it NEVER ENDS! get over it, your brother CANT walk and he's bent over a bowl! Give me a break will ya!!! SO got them to school but NOT without a lot of mumbling in the backseat!

Thankfully I was able to get an appt at NOON with a PED, not ours but someone that would look at him. I never did know why Jack was sick to his stomach, likely this is just a Jack thing and a motility issue with his night tube feeding. Sometimes he just wakes up feeling like he's going to vomit. Maybe I need to play with the rate again and have it go in slower.

The PED came in and picked him out of his stroller and examined his legs, hips, ect...He said it looked like he injured his hip somehow and felt 4-5 days on his back would help things to heal. I told him about his foot turning in some and asked if he thought this could be related. Jacks PT feels his hip in rotating some. This PED said to take him back to see Dr. C, his physiatrist he use to see when he was younger to see what he had to say. He didnt feel we needed any x-rays at this time, nor a referral to see a Orthopedic Dr.

A mom on the P2P Mito board mentioned this might be something called "Transient Synovitis" Her little girl had it.  
http://familydoctor.org/online/famdocen/home/children/parents/special/bone/181.html    
He does have many of the symptoms. I found this interesting, never heard of it.  Apparently this PED may not of heard of it either!

He also felt his tummy and didnt feel anything unusual. Jack had been complaining of belly pain since Saturday, just when you apply pressure. I put in a call to Jacks GI's nurses on Monday, called again Tuesday and STILL didnt get a call back until this morning. They told me to take him to the PED and they will see him on Friday if things didnt improve. So Im just watching that, not sure if the vomiting stuff this morning is related or not. He doesnt have a fever thankfully, they were first worried it was a appendix thing. SO thats where we're at, 4-5 days of doing nothin'! We'll be seeing Dr. S (mito follow up) at Seattle Childrens anyway on Monday, hopefully he'll be walking by then.

I should really be in bed...carrying Mr. Floppy Boy to the toliet all day was exhausting! I feel Ive definately learned alot in one day...NEVER, NEVER take being ambulatory for granted again! SO HUGE hugs to all the Ma-Ma's (& Daddy's) out there tonight that do this daily for their kiddos that cant get around on their own, you are amazing.

Sorry kids...its DENTIST DAY!

Sheesh, didnt we just go to the Dentist?!  Wow, that 6 mos went by quick. Thankfully NO CAVITIES for any of them! WHOO-HOO! WTG kids!

Im always nervous when its Jacks turn to get in the chair, with his oral aversions and sensitivity with latex gloves. BUT they have the non-latex ones and he seems to tolerate the smell of those ok. I was very proud of him today, yes a little panicky during the flouride treatment but managed to make it the entire minute without too many tears!

Heres the x-ray of Jacks teeth, check out those HUNKEN front teeth coming in behind his baby teeth! YIKES, his Dentisit said they look very big and may be a real problem in the next year. He already said we'll likely have to remove a few bottom ones because he doesnt feel they will fall out in time. Because our kids get their teeth so late, they also fall out late. This can be a real problem if you want the permanent ones to come in straight. Easton had to go 2 yrs with that giant overbite because his mouth was too young for braces. At 12 1/2, he still has a mouth of a 9 yr old, a lot of baby teeth to lose still. He is in the transition of getting braces so they will be pulling some teeth soon.

You can also see all of Jacks fillings and 2 silver crowns, this is what years of REFLUX does to a childs teeth! On top of a child that wont let you use toothpaste or get in there good enough to brush well.  He had to have all this done under anesthesia when he wa 4 yrs old at Childrens Hospital because there was just too much work to be done for him to be awake. They wont touch Jack in the office for major work because he's medically complicated. Hopefully we can keep his teeth healthy enough that we wont need to again.

Jack wasnt exactly in the mood to get his picture taken! LOL. (Sorry for the quality, these were taken with my cell) Until April kids! GOOD JOB!