Thursday, December 30, 2010

Dang Sick

It started with my dad.  Then to Ari.  Then Emily and Ben got it in the same day.  Now today Jace and I.  Eli is having some stomach issues as well so I'm thinking he's starting.  I'll be fine and so will Jace but I'm worried about Eli.  Going to call doc in a few to get orders on fluids.  Humph.

Wednesday, December 29, 2010

Sick all over

Ari is better from her round of the stomach bug, but last night Emily and Ben got it.  Not fun at all.  They both slept well last night so we will see how they are this morning.  If it's like Ari's round they will be fine stomach wise but tired.  Poor Ben is still pretty worn out from just getting over his pneumonia, so will really have to push the fluids with him today.  Jace is shockingly doing good.  His stomach is normally the 1st to act up.  Eli also doesn't seem to be bothered by the stomach bug, although he's still sick on his own.  He's still running the same darned fever.  His heartrate is slightly up but not considerably.  His lungs sound good.  He's incredibly tired and just wants to lay around all day.  Going to run him into the pediatrician as they want to run labs and make sure a level isn't off that could be causing some of these problems. 

The kids have spent the last few days kinda hanging out.  They've played Wii, played their new handheld game systems, watched movies, and been in general fairly quiet.  Emily has goofed off a little bit with her new violin, and she's begging for January to be here so she can start her lessons.  Jace hasn't decided what his new class will be yet, and Ben and Ari are both super excited for theirs to start.  Ben will continue with gymnastics but will also take tumbling; and Ari will continue with her kids day out but will also start ballet.  All of the kids will continue with swim lessons.

Bob and I are pretty good.  Exhausted.  Having Eli sick AND the other kids sick has been quite the juggling act.  Bob is at work again today, and hopefully he will be able to stay for the whole day.  Today is his last day before a 3 day weekend so that is nice.  I'm ok.  Yesterday I stayed busy.  I organized our entire bedroom and all of my yarn.  It was a long awaited project and I finally got it done, took me pretty much the entire day though.  Alot of my yarn had been thrown in boxes and baskets and had become tangled all together.  Took hours to get it all sorted out but now that it's done it's so nice!

Not much other new info.  I still need to get some christmas pictures put up.  I will do that this afternoon when we get home from Eli's doc appt.  Then I can post an update from that and pictures at the same time!

Monday, December 27, 2010

Updates on Phone Calls

I spent the morning making some phone calls.  Someone refered us to the UMDF organization and they sent me a huge email full of tons of information.  They referred me to some doctors in our state as well as a support group.  They also gave me tons of information and great websites and such.  So I started calling the doctors on their list.  Eli has an appointment with a specialist in Kansas City on January 31st.  He is a genetic doctor who works with Mito kiddos.  He comes with good references.  This will be our 1st stop.  If he isn't able to do what is needed we will head to Atlanta.  I'm anxious for the appointment.  They put us on their cancellation list but no guarnatees that we will get one.  A month wait for a specialist is good, but I wish it was yesterday. 
We do in general have a busy month.  Eli has an appointment with his new neurologist, his pulmonologist, his GI doc, and he has 3 therapies each week.  Oh and it's also his hearing test.  Oh and his overnight PICU stay for CPAP.
I'm nervous about this month ad I know it's going to be another emotionally draining monh, not that this entire last year hasn't been emotionally draining in itself.

Eli has been trying to figure out how to crawl.  He is getting up onto his hands and knees and is slowly barely moving forward.  He can get 2 small scoots forward and then he's exhausted.  Each week he seems to tire a bit faster.  They've watched and checked and monitored and tested.  It's not his heart and it's not his lungs.  Both docs are positive that it's not those 2 organs causing the fatigue. 

He had an increase in drainage yesterday morning and a touch of blood in his extension.  He did well during the day with no more issues.  By last night was super fussy and cried quite a bit.  It took quite a bit to get him to sleep.  He woke up this morning with a low grade fever and crying alot  He's done decent today but now is fever is increasing a bit again.  Go figure.

The older 4 are good.  Emily is over at a friends.  The other 3 are playing games and snacking on Pez.  Bob is at work again today.  I seem to be having allergy issues or getting a head cold...not sure which one yet.  Either way I feel like crap.

Sunday, December 26, 2010

Absorbing Christmas Day

I've been sitting here with this post window open for over 30 minutes and for one of the 1st times I'm not sure what to write.  Yesterday was a really sureal day for me.  I started the morning taking tons of pictures and an hr into the day the camera was put away not to be seen again until this morning.  I just spent the day in the moment with my family, instead of behind the lens.  I took gifts out of packages, I played on the floor with the kids, I cooked, I visited with family, I stared at my tiny man alot.  I cuddled with my man.  I watched how Eli explored the toys and the wrapping paper, I watched how he tired.  I watch him take TWO tiny little "crawls" forward to get to a new toy he wanted to touch.  I just absorbed this holiday.  I enjoyed it and I worried about what is to come.  I tried to not think about next Christmas, as for me right now it's such a scary thought to think that far ahead.  I'm trying to will myself to just live in the moment, and try not to look ahead as right now the future is a terrifyingly unknown for us.

The kids had a good day.  We woke up to Santa presents and stockings.  Then headed to my parents for christmas breakfast and presents.  Then home for presents here, and an amazing christmas dinner.  We spent alot of time hanging out together.  It was quiet and slow and relaxed.  It was just our day. 
They got alot of great presents.  They got leapsters and nintendo dsi xl's and a wii, and books, puzzles, bikes, games, toys, video games, extras, and so many more things I can't name right now.  Eli got alot of sensory toys and things to touch and feel.  He seemed to really enjoy soaking it all up.  Bob and I both got gift cards to our absolute favorite spa retreat location, as well as some new things for our kitchen!

Today bob is at work, and the kids are at my parents.  They spent the night there last night so that everyone could just get up and head to church this morning.  Tiny man is still asleep.  He's worn out from yesterday.  I watched him as the day went on and saw how drained he was getting.  He took 1 nap, pretty short, and went to bed fairly early.  I'm hoping the day didn't wear him out to much.  Going to try to keep everything pretty low key for him today, atleast as much as possible.

This next week brings us into some serious conversations.  The wheels are all slowly turning, but this week everything gets a shove forward.  We have all the information for some local Mito specialists and we will begin the process of getting all the records in and appointments schedualed.  January brings alot of big appointments.  Eli has his new appt with the neurologist, his hearing test, pulmnologist, PICU admit for CPAP, and hopefully a Mito appt.  We also begin ASL classes in January as a family.  I'm not ready for January.  I'm not ready for the information we will learn this next month.  Not ready for the decisions that we will have to make.  I'm just not ready. 

i will get some pictures from the holiday up today or tomorrow.
Merry Christmas to all!

Thursday, December 23, 2010

1 Day and 3 Appointments

Eli had Speech/feeding therapy and occupational therapy this morning.  He did pretty good at speech.  They worked with music (incredibly loud) and she did alot of hand movements while singing along.  She helped do some hand over hand signing basics with him and he wasn't super fond of this, but didn't completely refuse.  He wasn't so good at OT.  He had a complete break down crying fit which is so out of character for him.  He never cries, and this much was very shocking.  We didn't get much accomplished at all. 
Then we immediatly headed over to his pulmonologist.  She showed us the sleep study results and talked to us about what it all meant.  He is waking over 21 times an hr and having 4.6 sleep apnea spells an hr on average.  There were sometimes where he simply didn't breath, some obstructive breathing, and alot of breathing where it just wasn't enough to do good, shallow.  So she is going to try CPAP and see if that will help with his sleep and energy levels and such.  He will go into the PICU on January 3rd and stay an overnight to get everything situated and fitted. 
She also talked with us about the upcoming holiday. She will be out of town, our pediatrician will be out of town, 1 of our hospital docs is on maternity leave, and our cardiologist is out of town.  She said if he gets sick she just wants him admitted to the PICU, don't pass go don't collect $200, kind of thing.  It's a bit comforting and a bit disturbing that all of the doctors talk and make plans for their times out of office and such. 
Eli is still running a low grade, day 2, but no other symptoms.  Hoping it's just another fever of unknown origin, but to early to tell. 

Ben is a bit better today.  His fever was back up last night and he slept in our room again so we could do meds and breathing treatments.  He's had a touch more energy today and has drank more, even ate a bit for lunch.  He laid around alot, but seemed a bit better.  Hoping to try him in his own room tonight and see how he does.

Bob and I went out to dinner tonight and then did our grocery shopping.  At dinner, I had my grumpy jealous of another family moment.  There was a family with a young boy who was probably 8 to 10 months old.  He was sitting in the highchair, playing, and gabbering, and eating baby food, and learning to drink from a sippy cup.  Made me super grumpy.  I hate feeling that way but on the other hand I can't help it.  Frustrating.

In closing I will post a quote that I "stole and adjusted" from another tubie friend.  She posted this morning and tears immediately came to my mind.  She found the words for what I think and feel.  With permission I would like to share it here as well.

"Each holiday, each month, each week, each morning and each minute with my Tiny man is a special day. To some, Holidays here might look excessive...for me it is just another opportunity to see his smile and hear his laugh ~ my time with him may be limited and I will always seize the day. "Normal" parents don't ever have to stop and think that it may be their last Christmas, or Birthday...for us, it's reality."

Wednesday, December 22, 2010

1 Very sick boy and 1 starting

Benjamin is super sick.  He started coughing just a touch monday.  Then by Tuesday he wasn't feeling very well.  Tuesday afternoon he had a low grade fever and napped alot.  By 5pm he was almost at 103 and was cringing constantly as he coughed violently.  Called the doc.  She had us put him on 4 different meds and start nebulizer treatments.  His temp dropped, but the coughing continued.  He slept in our room so we could do nebs all night.  This morning he had decreased sounds on the right, doc did a chest xray.  He has pneumonia.  All along the inner wall of his right lung and partly into the mid section.  So he's now on strong antibiotics and nebs.  This evening his temp is back up around 102 and he's miserable.  Pushing ALOT of pedialyte.  He's mostly refusing.  He did take some and has peed once or twice today.  IV still a possibility but we are trying to avoid that.  Tonight he ate a popsicle so we will check in with the doc in the morning. 

This afternoon Eli starting running a low grade.  Doc is going to be pretty proactive.  Starting to push fluids a bit more.  15cc/hr per each hr he's off his feeds.  So that will equal 90cc every 24hrs of pedialyte.  Will keep a super close eye on him as well.

Bob and I are exhausted.  We didn't sleep as much as we would have liked between Ben and all of Eli's normal overnight care.  Hoping that the boys do ok tonight.  Everyone else is good.
More updates soon.

Tuesday, December 21, 2010

Heading towards a diagnosis....

I have been keeping some news.  I wasn't going to say much until we had rock solid answers but some things pointed people in the direction of concern and I was emailed multiple times today.  We didn't mean to concern anyone or make anyone worried.  We just didn't want to put this emotional burden on others as well until we knew for sure.  So many of you already know from facebook, but those of you not on facebook don't.  So here's all the info in a very small nutshell.
It was pointed out last week that Eli fit ALOT of symptoms for a certain disease.  Upon researching it, I was shocked.  It explained almost everything about him.  I got to calling doctors and his genetic team.  Sure enough everyone was in agreement with me. So here we sit.  We meet with everyone and are pulling files.  Testing will be done, referrals, travelling, more testing, etc, etc...and then a diagnosis or not.  We wanted a diagnosis so badly but definitely NOT this one.  Mitochondrial Disease, better know as Mito.

We are still absorbing this as a family, and so are many of his docs.  We have no idea what to do or where to go from here.  I'm scared and I don't want to do this.  This isn't a road we ever expected our journey to take us down.  We had always expected therapies and meds and surgeries and cures.  We hadn't expected an easy road, we expected tons of bumps and curves and detours, but we expected the ending to say "and they all lived happily ever after".  Slowly but surely that ending has been ripped away and with this diagnosis will completely vanish.

Again this is NOT a guarantee yet.  It is definitely suspected, but has NOT been proven yet.  We will keep everyone updated along the road of testing.  We meet with doctors over the next 6 weeks to finalize the plan and what everyone thinks.  At the end of those 6 weeks we will have a pretty darned good idea of what next.

We continue to ask for everyone's prayers, mediations, kind thoughts, hugs, words of encouragement, emails, etc.  We need them now more than ever. 

Monday, December 20, 2010

Santa and Mrs Claus

I have never felt as humble as I did today.  It is always so refreshing when you discover that there are still good people in the world who genuinely care.  As most of you know we were looking for a Santa who was willing/able to come to our home.  Eli is not able to go out in public for the risk of getting sick, so letting him see a Santa wasn't going to be possible.  I contacted Tracy at B98 (our local radio station) and she spent some time seeing what she could find.  She was able to find an amazing man, who transformed into Santa.  He arrived with Mrs Claus, and 2 bags full of gifts for my family.  He had been on my blog and had gotten to know the children and their likes and dislikes.  He had spent time at the store picking out just the right gifts for each child.  When he arrived he knew each childs name and age, and as he presented the gifts he talked about how he knew Ben was learning to read, and that Jace loved being outdoors, how Ari loved babies, and Emily's love of books.  Each of the gifts was perfectly in line with his stories.  Eli got blocks to learn to build and cars to go.  Ari got matching twin babies.  Benjamin got a robot named Alphie that works on matching and letters and numbers.  Jace got his 1st big boy football.  Emily got a jewelry making set and a book.  All of the children got a stack of golden books.  I got a chicken soup for the soul gift card, and Bob and I both got a giftcard to Walmart.  Santa and Mrs Claus held the kids and chatted with the and allowed us to take tons of photos.  Eli loved Santa and curled right up on him and almost fell asleep.  We feel so blessed to be able to experience this together as a family.  This isn't something I can ever thank everyone involved enough for!
Here are some of the pictures from the morning!

Here are some pictures that we have taken with Santa as a family and then pictures that we took for christmas!

It was an amazing day and my kids will be talking about it for quite some time I have no doubt about that!

Sunday, December 19, 2010

The Little People

Figured I'd type up a full update on the 5 little people.

Emily~ She is doing well.  The semester is over and she got all A's like always.  We had her meeting after all of her testing.  She definitely qualifies for the advanced work but not yet for the gifted program.  We put together a plan to keep her super busy and super challenged.  So far she's been loving the extra harder work and projects.  She will be retested around middle school age.  She just finished this last round of swimming lessons and has really enjoyed it.  She is swimming fairly well and super excited for the next round of lessons to start.  She's been working on a knitting project, and spends tons of time listening to music and goofing off on her laptop. 

Jace~ He's a busy dude.  He also just finished up this semester.  He did pretty well considering.  He's still in his reading and math interventions, as well as speech and handwriting supports.  We have seen a change in his handwriting as long as he's really focused and someone is keeping a close eye.  Hopefully that continues to really improve this next semester.  He met with his GI last week and she decided to take him of his GERD medication and just leave him on his CVS med.  I wasn't super hot for this idea, but Jace insisted on giving it a try.  His vomitting hasn't returned, but he is already seeing a big change in his bowel issues.  So I'm guessing he'll be asking to go back on his GERD meds by the end of the week.  He knows his body pretty well so we try to give him leway.  His doc also said in a few weeks he could try some cows milk, but I'm not thinking that's going to happen now that his bowels are already getting out of whack.  Luckily he loves his almond milk and can even find almond milk ice cream.  His biggest complaint is missing yogurt!  Jace also just finished swimming lessons for this month and is really starting to enjoy it!

Benjamin~ He's doing pretty good.  His eating is on a slow down point, but hopefully that will rebound quickly.  He's been pretty silent in the mornings and mostly uses Brown Bear for morning communication, which is limited to head shaking of yes and no, and paw waving.  He's doing well in school, as well as speech, and his special workshop.  He got another full sticker card from speech just last week.  He's learning to read and loves pointing out words he knows as well as trying to guess the letters in words.  He enjoys reading and spends his time between lunch and the bus reading books with Randy.  Ben just finished up his swim lessons for the month and is doing so well.  You would never know that he was so scared of water not that long ago!  He is also loving gymnastics still and is looking forward to starting his tumbling class in January as well.

Ariana~  She's such the little princess.  She finished up her kids day out for the month and had alot of fun at her christmas party.  She's really enjoyed getting to meet these new friends and go each week and do fun things.  She also just finished up her round of swimming lessons and is really improving and getting more comfortable in the water.  Ari and I have been working on her signing and she's my little sponge.  She's already mastered about 15 signs and loves showing them to Eli.  I think Ari will catch on super fast. 

Eli~ He had a low grade fever for 2 days but it seems to be gone now.  His heart rate was elevated, but back down now as well.  He's doing very well with his new glasses.  He does try to take them off but not near as much as we would have expected.  He's rolling around really well, and rocking back and forth on hands and knees.  One of these days he's going to figure out that he can move and he'll be off.  His DME called and said that he is getting his new portable pump for christmas!  We are super excited to finally be getting a super tiny pump and bag that he can learn to carry on his own.  He did well with OT and speech this last week, and is working on learning to sign.  He is still madly in love with books, and it's a great learning opportunity to teach him new signs!

All of us start ASL classes in January.  We have found a class that will teach families, not just parents and we are super thankful for being able to locate such a class.  We are already working on basics at home, and hopefully the kids will catch on super fast.

We have a few things that have been mentioned for possible diagnosis suggestions with Eli and will begin looking into them this coming week.  Hoping to get the answers that we need.  One of the possibilities will not be a quick answer, and it's definitely not an answer that we want to hear.  We will obviously update with details as we know more.

Again thank you to everyone for the emails and comments and kind words.  We welcome any and all comments! It's nice to know that others are out there following us along in our journey!

Saturday, December 18, 2010

Just one wish....

Yet another week has passed and Christmas is just a week away.  WOW. 
I'm depressed.  I'm in a slump.  It's just making it thru each day.  Every day is spent caring for the kids, and then its to bed.  I'm lucky to make a full dinner, let alone read, or knit, or watch TV.  I don't talk to friends of family hardly.  I talk to doctors and nurses and medical supply companies and pharmacies.  My life doesn't revolve around normal stuff. 
I can't go to the gym during the day because we only have 1 car, and Bob needs it for work . We can't go to the gym in the evening because Eli isn't allowed to go to kid zone because of the sickness risks.  It's to cold to go on walks outside like we were before.  Treadmills are expensive. 
We don't have cable because it's to expensive, so TV is watched on the laptop or it's all movies.  The little 2 broke the Wii.  Not many games can be played with 2 people.  Books are expensive, and getting to the library requires a vehicle, and going at night requires a nurse since Eli can't go out in public. 
Date night keeps getting cancelled because it's to expensive, or Eli's sick, or whatever reason. 
I know I sound so bitchy.  But I want 1 normal day.  I don't want a day of worrying about Eli's temp or heartrate, I don't want to have to answer 1 phone call pertaining medical information, I don't want all the mail to be from doctors and insurance companies, I don't want to worry every morning that something could happen and my child could be hospitalized or worse by the end of the day.  Things with Eli change so quickly.  It scares me sometimes.  There are times I look at him playing on the floor and my mind races thru the past year and everything that could be to come.  It's so hard to quiet it all sometimes.  Sometimes I'm so scared I just want to scream and cry.  Sometimes I am just numb to it all. 
I look thru my pictures and it's all the 4 kids out in public doing family activities, and then there is Eli's pics at home on his rug.  I want family pictures.  I want my family to be together.  I want to just talk to my son.  I don't want every minute of every day to be a therapy moment, or learning to sign and communicate, or timing meds and feeds, and flushes, and all that.  I just want to be.
I think that really sums it up.  I want to be.  I want 1 day to be more than simply trying to exist until night.  I want peace.  I NEED these things.  It's so far past a want, it's past a need...never knew in the past that it was even possible to go past a need.
I know that there are others out there thinking so many of these same thoughts.  I get emails from you.  I read them and my heart breaks for you in the same way you describe yours breaking for us.  We are all eternally linked, our life situations so unique.  We are strong because we have no choice, but inside we are a mess.

My wish for christmas is peace.  and not in the corny peace to the whole world crap.  peace inside myself and my household.  peace that allows me to take an entire breathe.  peace that allows my mind to clear and my eyes to completely close.  peace that allows me to sleep soundly.  peace.  full everlasting peace.

Thursday, December 16, 2010

Eli's New Look

Eli got his glasses today.  He has tried to taken them off like 10,000 times.  His 1st sign will definitely be no-no.  LOL.  He looks super cute I think! 

He also had speech and OT today.  He did really well at both.  He put a fish in a container twice and he licked a fish not once but TWICE.  I was beyond excited!  Speech is on a bit of a hold until after his ear testing.  But we did a bit of sign, and met the woman who will take over with hearing aids and/or signing.  She also gave me information about a signing class at the local hospital for parents!  It's free!  So we will be beginning it in January, as well as Paula, Eli's main nurse.

Yesterday we went out and delivered all of our christmas cookies to all of Eli's doctors!  Eli dressed up as santa.  He was super cute!

The last little piece of news is Eli is going to meet Santa!!!  Tracy Cassidy from B98 has been helping me find someone and she emailed me super excited yesterday that he had found someone.  He went thru chemo as a teen and has a soft spot in his heart for special needs kiddos.  He's coming to our home on Monday to meet Eli and the kids!  We are so glad that Eli will get to experience this aspect of life!

Tonight is my knitting christmas party!  I'm looking forward to my evening out and getting to hang out with my friends.  Looking forward to all the yummy food too!  hehe.

More updates and pictures coming this weekend hopefully.

Tuesday, December 14, 2010

Eyes Next

Today was Eli's appt at the Ophthalmologist.  It was alot of info and most not good, which at this point I feel as though is the norm.  I seem to go into each appt hoping for good news, but expecting to not get it.  The good news is we loved the doc.  He was really good with Eli.  He listened to Eli's FULL history and looked at pieces of the big picture.  He then did a very full check, then dialated and then did another full check.  The retina and optic nerve look good, BUT the left eye is severely farsighted and the right eye is severely near sighted.  He has strabismus, which is where his eyes can't track well together, aren't aligned well together, and have a lack of coordination.  Also his eyes twitch which is a neuro issue.  If the issues aren't resolved he could either completely lose his sight or the weaker right eye could simply stop functioning and the left eye would take over.  Focusing and depth perception and such will be hard for him.  So the 1st thing we will try is glasses.  The 2nd option is patches, the 3rd option is surgery.  They fitted him for glasses today and they will be in before the week is over.  Also at the 1st sign of retina or optic nerve degeneration he will be sending us to a specialist at the university of iowa in iowa city.  We can't lose Eli's eyes as well.  He said he wants to see Eli in office every 2 months unless we notice any problems.  He will be followed very closely.

Now we figure out what system to do a full workup on next.  I am going to be spending the rest of the week pulling every single piece of paper of Eli's file.  I will get everything into a chronological order and I will be sending it out to every major children's hospital in the country.  We've got to find help.  We've got to find out what's going on. 

Eli will be getting started with speech and OT tomorrow.  The push is on for signing.  We will also be meeting with a dear friend of mine who is an ASL interpreter.  She is bringing a deaf friend and parent from the community to talk.  She's a big advocate.  We are so blessed to have so many amazing people in our life.

Eli is in a pretty good mood this morning.  He's gotten to leave the house 2 days in a row and he's fascinated by being in public and looking around.  He loves the christmas tree and all the pretty lights at home although he's not interested in touching any of it.  He's most content on his carpet with his same few toys, his books, and his bag, tubes, and drain.  His nurse, Paula, is on for most of the rest of the month so things will stay pretty consistent and stable in his little world.

I'm numb, I think.  I can't quite tell if I'm just trying to convince myself that I'm numb because it seems safer and easier, or if I really am.  I don't know what to do.  I don't know where to turn for help.  Heck our doctors don't know what to do next.  They all call him the Eli puzzle.  New doctors are told you aren't ready for Eli he's to complicated.  Eli's specialists demand that nobody else touches him or sees him, they bend rules to be able to be the only one providing care for him.  These are the situations you want to find yourself in.  I never thought this would be how life would be.  Every day I'm scared.  Every doctors appt I'm scared.  I hate being scared.  I try sooo hard to be strong for Eli and my family but it's so hard.

More updates soon.

Saturday, December 11, 2010

Saturday Morning

Eli got his 1st synagis yesterday.  He had to get 2 shots.  He wasn't super thrilled but did pretty well.  He ran a bit of a low grade last night, but gone this morning.  We've kept him pretty low key and around the house these last few days.  This morning he's hanging out rolling around a bit, getting tired pretty quickly which has been a constant concern.  Hoping after a nap we can work a bit on signing.  Jen is here today with him, trying to get his chart organized for the upcoming week.  He's gained a touch of weight, but still down from where we were a week ago.  This next week will bring some new OT and speech work and a huge push on signing.  So many phone calls have been made and so many people have been talked to.  It's all such a blur.

I'm exhausted and I'm a bit numb.  Most days it's getting thru it.  I try not to think to much about what is actually going on.  Sometimes that's hard to do though.

We met a new tubie friend LOCALLY.  Eli was at his ENT and as we were leaving I saw another little boy with a tubie backpack.  I of coursed went right to the mom and talked to her.  It was awesome.  I couldn't believe it.  We have exchanged info and already talked on the phone.  She was able to get us into the best neurologist in town!!!  We were on an 8 month waiting list and she got us in next month!  We are super excited!  We are going to be calling our cardiologist to get her a fast appt on monday!  :)  Can't wait to get to know their family more!

The oldest 4 are at swimming lessons this morning.  They love saturday mornings.  Then it's off to the grocery store and we will be doing some baking this afternoon!  Yummy!

More updates and pics soon!
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Friday, December 10, 2010


I feel as though  I'm losing my son piece by piece bit by bit.  Yesterday was his ENT appointment.  There is no fluid behind his ears.  It is permanent hearing loss.  Most likely from the high doses of IV antibiotics that have had to be given over the last 12 months, meds that were needed to save Eli's life.  But now here we sit with a child that can't hear.  The doctor said it's not fixable.  He is going to do a special brain stem test to determine if he has any hearing left at all.  This test will be done in the hospital under anesthesia.  They are getting it schedualed and will call me.  He also asked if we had Speech and OT to start working on signing.  I informed him we had already begun learning since Eli doesn't make a single sound.  I am stunned by all of this.  At one point he could hear.  At one point he passed all of his tests.  I just can't believe this is happening.

We sat back yesterday and thought back thru the last 12 months.  Before he was born he had the kidney problem, then at birth we knew of the neurological twitches and such, then the GERD began.  Then over a bit of time the lungs, then the heart, then the esophagus, then later the stomach, then his feet and hands, then now his ears.  I know I'm missing more things as well.  Slowly but surely systems that were testing out normal and fine are stopping functioning or stopping functioning correctly.  Someone is missing something.  The ENT, cardiologist and his nurse agree with me as well.  I don't know what we are missing, but something is causing each of Eli's systems to slowly stop functioning properly.  We have to find it and figure out how to fix it before more systems are affected. 

I received multiple phone calls last night with information.   I'm looking into sign language classes for Bob and I and for the kids.  A friend is looking into support systems and advocate groups in the community.  I will be calling EVERY single doctor today to push them to find out what's going on.  I'm going to go back thru all of his records and make up a detailed time line.  Someone has to know what's going on.  Someone has to do something.  Someone has to make this stop.  Someone has to fix my baby.
Oh and at some point today we as a family need to grieve...AGAIN.

Wednesday, December 8, 2010

Quick Check In

These will be fairly short updates as  life is going to get busy here again in a few minutes as the kids are all getting up.

This last weekend we took the kids to the tree farm.  We rode on wagons pulled by horses and rode out into the fields.  We roamed around looking for the perfect tree, and then everyone got to take turns cutting it down.  Then we rode on the same wagons back to the lodge and picked out ornaments.  The kids had a great time!

Emily~ She's doing well.  They are finishing up her testing at school for the gifted program.  She's still getting the harder work and is enjoying a bit of a challenge, although it doesn't seem like it's much of one for her.  She's busy at home listening to music.  It's her favorite past time.  She's met one of the neighbor girls and they've been playing basketball some days after school as well.

Jace~ He's my busy man.  He's always on the go.  He's working hard at school.  He has speech twice during the week, and then he is having someone come in and do handwriting work with him daily at school.  He's also passed his 1st reading program and is now in a new group.  When he's home he's either outside or playing with his Nintendo.  He also lost another tooth this past week. 

Ben~ He's doing pretty good.  He has his respite worker 5 days a week, and then another one 2 evenings a week.  He is getting along really well with both.  His day worker, spends alot of time building with ben, and he's really enjoyed that.  He is working on learning to read in school, alot with sight words.  He has a tooth that is moments from falling out!

Ari~ She's a mess.  She's so darned bored being here at home and wanting to stay busy.  We are hoping soon to be able to put her into more of her kids day out programs, or into a preschool program.  She spends alot of time bugging the heck out of her siblings and getting into trouble.  Typical little sister! :)

Eli~ He's my little 1 year old man.  He's rolling around, and is getting up onto his hands and knees alot.  We are just waiting for him to start crawling.  He had his appt with the cardiologist earlier this week.  He said his mitral valve is still leaking a bit, but the hole is closing well.  His pulmonary hypertension number has dropped again, and is now at the very top of normal range!  Super good news there.  We need to avoid any illness and no central lines, so hopefully his heart can have a chance to rest a bit.  Then he had his appt with audiology.  That's where the good news ends.  Eli failed all hearing tests.  His eardrums weren't moving at all.  This could either be because of fluid behind the eardrum, which there hasn't been in the past, or because of damage to the middle ear.  His ENT was able to get a rush appt for Thursday, so we will see what he says. 

Bob~ He's sick.  He has some sort of virus that just keeps hanging on.  He's trying to go back to work today, but not confident he will make it thru the day.  He's had to stop taking the cough medicine with codeine, but his cough has come back pretty strong.  So we'll see how it goes.

Me~ I'm ok.  Busy.  It's still a day by day kind of thing.  I feel most days like I'm on auto-pilot just trying to make it till bedtime.  Most days feel as though they just blur by.

Once we get internet up, I will get pictures up, and updates more often!

Wednesday, December 1, 2010


My tiny man is 1 year old today.  I can't believe it's been a year.  WOW.  He had a nice low key day, and was super happy.  Tonight he had a special birthday cake that was food-free, fire-free.  It was motility, aspiration, and O2 approved and safe!  :)  He got to open a few of his presents and will get the rest at his party on Friday.

In other news.  Heck.  I'm exhausted.  I will actually try to get a full update up tomorrow!