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!

Tuesday, November 23, 2010

Sleep Study

Eli had his sleep study last night.  He didn't do so well.  He did great with letting them hook him up, and he fell right to sleep.  They have to have 6hrs on the monitor and 8 is a great number.  Eli slept for 10 1/2 hrs!  The tech went on and on about how perfect he was and how good he was and how absolutely adorable he was!  :)
The bad news is he failed the test.  His low O2 is set to alarm at 92%.  Eli spent most of the night in the low 80's and 70's and his low was 62%  He had central mixed apnea spells.  Central apnea is when the brain doesn't tell the body to breath.  The mixed is when his airway collapses and doesn't allow the air to move.  So not a good thing either way.  The beginning of the night he did okay but within 1-2 hrs he began to struggle.  By the mid point of the night all of his O2 reading were lower than his alarm setting, and by early  morning/morning he was in the low 70's and 60's.
The report is being sent over to his pulmonologist but mostly likely what will happen is BiPap and an apnea monitor. 
He's exhausted today. After struggling that much all night with NO oxygen he's beyond exhausted today and has spent alot of time napping.  I'm tired too.  He slept great but I definitely didn't!
So we are now back to waiting to find out what next.  Will update as we know more.
Here are 2 pictures of him from last night.

Sunday, November 21, 2010

Sunday Morning Already

We have been so busy this last week.
Emily~ She's doing well.  She's been busy with school and a new math program that they are working on.  She also made a newspaper with a friend for a class assignment.  They wrote an article and did a great job.  It look very professional.  She's getting really good on the computer.  She's been listening to alot of new music lately.  From the sounds of a few of the songs we are going to have to start monitoring and making choices on some of them.  She's not super happy about that but a few of the songs don't sound like something she needs to be listening to.  She's hitting that age where it's constant attitude.  We can definitely tell the hormone changes occuring.
Jace~ He's just go go go.  Yesterday he spent most of the afternoon outside playing with his friends and riding his bike.  Outside is when he's the happiest.  He is definitely going to be an outdoors man!  :)  He's been working with speech and his additional support.  He works on his handwriting each day with a special "helper".  We have already seen some changes.  He has been getting in trouble at school lately for lying.  It's an issue we are also seeing occur at home.  Something we are going to really start hitting hard on and stressing strongly to him that this can't continue.
Benjamin~ He's going thru a rough patch at the moment.  His meds aren't quite up to the correct levels and situated yet.  We know it takes time but this is always the rough period.  His OCD/paranoia have been pretty high.  Not fun.  He's doing well with his speech at school, and his new social skills program that he is working thru.  Ben is really enjoying his gymnastics and his teacher is really impressed with his progress.
Ariana~ She's pretty good.  Unfortunately she watches alot of Ben's behaviors so we see some of them crop up, and we are never sure if she's simply mimicking him, or if she actually has some of the same "tendencies".  She will have her next evaluation at the beginning of the year so we will see how she's doing.  She's loving her Kids Day out and will continue!
All of the kids have finished their 1st round of swim lessons.  Emily is learning to swim under water.  She has 1 skill left to master to move on to the next class.  Jace has mastered about 50% of his skills and has a little bit before moving on, but he's made great strides this month.  Ben did amazing.  He went underwater in the deep end to collect pennies off the bottom of the pool.  His teacher was super impressed.  Ari also did really well.  She put her face under to get pennies from the bottom and even did a back float all by herself.  All the kids will go right into the next round of swim lessons right after thanksgiving.

Eli~ He's pretty good.  He's getting so darned big.  He's made alot of really big developmental strides.  He's rolling all over the place and getting up on his hands and knees.  He's not crawling, but he is rocking back and forth a bit.  I am betting by January he will be crawling.  Not sure what we will do with all of his tubes.  He's already getting so tangled in them when he rolls.  His birthday is in 9 days and I'm not ready.  My tiny man is going to be 1 already.  His lungs sound pretty good.  They decided to put him on a full dose of antibiotics to treat another round of pertussis.  He meets with his cardiologist this week and I'm really nervous about that.  He also has his sleep study coming up this week and I'm looking forward to getting some answers.

Bob and I are pretty good.  Bob's working some hours, still not full time, but more than he was.  The 1st shift scheduale is definitely working out better.  He meets with his GI surgeon this coming week, and they will get all the testing started.  He will also be meeting with his rheumatologist soon.  He has his good days and his bad days.
I'm pretty good all in all.  They are still resituating my meds.  Some things seem to have improved some.  Most days it's just whatever we can do to make it thru each day.
Looking forward to thanksgiving this next week and spending some time with family.

Wednesday, November 17, 2010

Wednesday Night Already

Another week flying by. 
Eli~ He's stable.  :)  Always nice to say.  The hospital tests came back showing that his pertussis was still positive.  After lots of people talking, and a chat with Eli's infectious disease doc from his 1st round of pertussis, they believe that it's positive still because he had it a bit ago, not because he got it a 2nd time.  BUT he's already on the antibiotic to treat it for his motility so we are doubly covered just in case this is a new round of pertussis.  He is also back on his acid blockers.  Hoping that will help a bit more.  Eli met with his pediatrician on Tuesday.  She got the paperwork sent out for his full OT and speech eval and feeding therapy.  We are super excited to get to be doing this locally!  He will get to work with the same speech pathologist that he worked with way back when he 1st tried a bottle.  We really liked her.  He had PT this morning and did really well.  He met his goal of learning to sit.  We wrote a new goal to work on going from sitting to laying, and from laying to sitting.  He's a bit fussy this evening as his antibiotics are causing some GI issues which is making for some painful diaper rash.  He goes to his cardiologist next week to discuss the possibilities of heart surgery.  I'm probably more nervous about this appointment than any we have been to in the last 11 months.

Benjamin had his appt with the psychologist this Tuesday as well.  I was really impressed with her.  She agreed with his diagnosis of Autism and OCD and added 3 or 4 more to his list.  She really listened and talked and did some things with him.  Pulled his past records and all of those things.  I think she's going to be a great fit for Ben.  She 100% agrees that meds are needed.  She sent over a script and he will start that tonight.  She's starting him on 1/2 of the lowest dose 1 time a day and we will work up from there.   Hoping we are on the right track with this one.  Ben's new respite worker also started this morning.  Hoping he will be a good fit for Ben as well.

The older 2 are busy with school.  Jace is getting ready for his Christmas music program.  He's super excited about having a part in it, and singing his duet.  Emily has been pushing hard with her reading.  Everytime I see her she has a new book.  She's also been spending alot of time in itunes, she's got so many gift cards she's been having fun.  Books and music are her passion. 

Ari is well.  She is excited that she has Kids Day Out tomorrow and then because of the holiday she gets to go back on tuesday.  She loves it!  Such a good choice for her.

Well tiny man is crying so I'm off.  More soon.

Monday, November 15, 2010

Pulmonologist and Basic Updates

Eli had his appt with the pulmonologist this morning.  She thinks that he is aspirating stomach acid when he is coughing.  She is putting him back on his prilosec to help control the stomach acid a bit more, and a VERY small flush.  Trying to keep everything out of his stomach as much as possible.  So we can't seem to figure out how to keep his darn lungs protected.  They are going to push some more with OT and speech, doing an evaluation here in Wichita, so he can hopefully receive more consistent local therapy.
We tried some time off the G drain this morning and by this afternoon he was super fussy.  Hooked his drain up and got over 50cc of bile in 1 hr.  So clearly we can't go without a drain.  Luckily they got his new drains and adaptors in today.
His pulmonologist also wants the RSV vaccines.  She is doing all of the paperwork thru the insurance to get that done.  He would get 1 shot a month from November until April, so 6 months total.  The doc told us the cost of EACH of these shots and HOLY CRAP.  I had no idea they could even make a shot that expensive.  But if that's what we need to help protect his lungs then I guess that's what we need.  I will however be researching the vaccine tonight!
Tomorrow Eli has his appt with the pediatrician, and next week with the cardiologist.  Nervous about that one.

Everyone else is doing pretty good.  Ben has a new respite worker that will be starting this week.  We will see how that goes.  He seems like he will be a good fit for Ben, so fingers crossed.  His Tuesday/Thursday night worker will continue with him on those 2 nights as they do really well together.  Jace finally found his missing library book, so finally got it returned.  He's super excited that he gets to keep his money and actually go shopping instead of paying off a library fine.  Ari is good.  She did well with swim lessons this last saturday and even tried to float on her back all by herself.  Emily is good.  She's reading alot and listening to music alot.  She's constantly finding new groups and new songs that she likes.  She did great at swim last week and was able to swim underwater part way across the pool.  She was super excited.

Bob and I are ok.  Exhausted.  Hospital stays and eli being sick just wear us out.  It's beyond exhausting.  Hoping for life to get back to normal, not that we know anymore what normal is.

On the child support update...Brian has now decided that he thinks the judges signature looks alot like mine, which mine you it doesn't.  So he wants proof.  Clearly the judges signature, the judges stamp, the court clerks, stamp, the court issued case number, AND the emailed court papers directly from the court clerk weren't proof enough.  Nor the fact that he can call the courthouse and verify the case number AND he can call Kansas Payment Center to verify the case number by using the social security number or case number.  So he is 3 payments behind (hasn't paid anything) and he hasn't called the kids, acknowledged a birthday, or anything.  I don't know how else to get him to understand it's about the kids not about him.  I have my last children of divorce class this coming Thursday and then the papers will be finalized.  Not that he will believe that either.  When he gets that 1st TINY paycheck and notices the garnishment, wonder if he will finally believe it.

Home...for now

We came home last night.  We pushed to get released.  We tried out a new hospital and it was a mess.  We won't be going back.
Eli's only official diagnosis from this hospital stay was aspiration pneumonia and acidosis.  His heartrate is still a bit elevated and we aren't quite sure why.  Temp down which is good.  This morning he woke up coughing and gagging so we got the lovely suction machine all hooked back up with clean tubing and ready to use.  I hate suctioning.  He's obviously breathing a bit faster since he's coughing and gagging.
This week we have to go to the pediatrician, surgeon, pulmonologist, and cardiologist.  Fun times.
The hospital is a bit concerned that the hole in his heart hasn't yet been closed and they think we should really discuss that with cardio.  We will see what his thoughts are.  Of course everyone admits that heart surgery with pulmonary hypertension isn't a good choice.  So not sure.  Hospital docs discussed an option not to do open heart surgery but to go in with a cath thru his thigh.  We don't know the best choice obviously and will discuss with his doc this upcoming week.
There is also going to be a big push on all ends to figure out the aspiration.  We are only feeding foods and all meds into his J, so his stomach is empty.  I am unsure how he continues to aspirate.  We have got to figure it out.  He doesn't need anymore long term lung damage.
More updates as we know them!

Sunday, November 14, 2010

Hospital Stay # heck who knows anymore

Eli has had his cough for a few days, and as the week went on it got alot worse.  Friday overnight he started running a fever and hardly slept at all.  He was not feeling well.  By Saturday morning  he had 101.2 fever, his lungs sounded yucky, and he was miserable.  Doc said go to the ER for a chest xray.  So off we went.  he does in fact have pneumonia.  Go figure.  They admitted him and got an IV started.  He is on IV antibiotics.  They ran fluids last night thinking he might be dehyrdrated.  Turns out he isn't. 
His heartrate was super high, 180's even up slightly over 200.  He's been breathing pretty quickly, which isn't normal for him either.  His fever is down this morning.  His heartrate is higher than normal, but down from yesterday.
Everyone questioned us alot on why they haven't done heart surgery to close the hole in his heart.  HMMM.  We don't know.  We have always assumed our cardiologist has made the correct choice.  Everyone here has commented that he's one of the oldest kids they've ever heard this type of heart murmor in.  Go darned figure.
We are waiting on the doc to do rounds this morning.  I hate waiting.  More info when we have it!

Tuesday, November 9, 2010

Upper GI and Sonogram Results

This morning Eli had his modified upper GI.  They put the barium straight into his G and then took pics, waited a bit, and took more pics.  No refluxing, although everyone agreed this study didn't tell us anything and nobody knew why the doctor ordered it.  Soooo.  Anyways.  We talked to Dallas and they are all confused and trying to get things sorted out.  Then we called Denver and talked to IR(interventional radiology), and it was a great conversation.  He was super informative and you could tell he knew what he was talking about. They even carry every size.  WOW.  Super exciting.  They also have FOUR IR's on their team.  HOLY COW.  We have 1.  He said they do 3 to 5 J's a week, and have 300ish patients total that they do J's for.  I was super impressed.  We chatted for a while and he told me to feel free to call back if we had anymore questions.  Our local GI is calling Dallas to try to get us in there, but we are leaning towards Denver even though it is alot farther away.  We are just constantly trying to make the right decisions for Eli but it's so hard sometimes to know what the right decision is.  It's also so rough needing such a specialty area of medicine.  Most doctors around here have no clue what a Jtube is, what to do with it nothing.  It's rough and frustrating.  As of right this minute my tiny man is sound asleep hooked up to his feed and drain, content as could be. 

I also had my sono this morning.  My left ovary no longer has the large cyst, it just has lots of small fibroids, and my right ovary still has a cyst but it's alot smaller.  But my ovaries still aren't working correctly.  My OB made the decision to go ahead and start me on some new meds and see if that helps with some of the symptoms.  Right now we will keep checking in every 3 weeks to see how it's all going.

Ben is in quite the mood today.  Multiple tantrums, and he's on the move tonight, refusing to stop and sit.  His respite worker tonight is shocked at how much he's on the move.
Jace is pretty good.  He's working hard on his spelling words this week, and his handwriting.  We are definitely slowly seeing some improvement.  This is his 1st week back on IEP, so he's getting resituated with speech and such.
Emily did a newspaper project for school and had alot of fun with it.  She did a great job.  She went down the street this afternoon and spent some time playing with some new kids she met on the bus.
Ari is same as always.  Busy busy.  She's always trying to keep up with the big kids.  She spent some time outside playing with the little neighbor girl.  They both get along well.

Bob is loving 1st shift and enjoying being home every afternoon and evening.  It's really helped out alot.  His new meds seem to be working a bit, with a few unwanted side effects.   We know it will take time for it all to get situated.

Monday, November 8, 2010

Quick monday check in

Today Eli had an appt with his GI doc.  She's a mess.  She couldn't figure out his meds or his feeds, and she kept telling me over and over that everything is motility and she doesn't know what to do.  She says "He has full GI motility, esophagus, stomach, and intestines".  NO KIDDING.  We've already figured that out.  She is referring him to Dallas or Denver.  Our choice.  We are going to have to do some major travelling to get this all figured out.  Calls into everyone.  Records being faxed all over the place.  As of right now Eli is on 20hrs of feeds, with 4hrs off, that we are doing 1hr at a time.  Still have the continual drainage. We had hoped to maybe get rid of that, but then the other day he had alot of bile, so not so sure we are ready to try without.  We don't know anything on the new med yet, but that's to be expected.  Tomorrow his GI is having him go to the hospital for a modified upper GI.  They are going to put barium into his GTube this time and see if they can get a good look at the fundo area and how well it's holding up.  Unfortunately for Eli he has to have his feeds turned off 4hrs before the test.  So he won't get any additional play time off the pump tomorrow.  Eli is starting to roll alot.  He can get himself around a bit.  He's also getting onto his hands and slightly onto his knees for a few seconds and I'm just waiting for the moment he figures out he can move like this.  Not sure how that will work with the drain and tubes and pumps and such but we'll see how it goes.

Emily is currently frustrated with school as they've started a new math program, and it's going way slower than she would like.  It's slow because they are required to work thru it as a class, so she isn't allowed to work ahead.  This is causing her not to have time to get her accelerated work done apparently.  She's quite annoyed.  We told her we would contact her teacher and find out what the options are.

Jace is doing ok.  We had his IEP meeting at the end of last week and got alot accomplished.  He will have speech twice a week, and they are having someone come in and work on his handwriting daily.  Also he is having the tests read to him, instead of him having to read it and struggle thru.  He's able to do alot of the answering of the questions outloud as well.  Obviously this isn't how they do his reading comprehension tests, but for everything else. 

Ben is ben.  He was in quite the mood today when he got home from school.  Respite took him outside and that seemed to help calm him, although he wasn't interested in dinner.  He had his bath and hopefully will settle for bed quickly.  He was able to show his teacher the child that was abusing him, and apparently Ben wasn't the only child this was happening to, although it seems he was the only one to come home with bruises.  The teachers are keeping a close eye, and so far all seems good.

Ari is good.  She's busy as always.  She's the social butterfly of the house and is always moving and always talking.  Eli finds her fairly entertaining but he tires of her quickly.  Sadly for him, he's the only kid around all the time, so she showers him with attention.  She loves when everyone gets home from school and they can all head outside to play with the neighbors.

Bob is back to work.  He started 1st shift as of sunday.  They were FINALLY able to get his scheduale accomodation done.  It's definitely been a change having him gone, and especially during the day, but it's been so much better in the evening to have 2 adults to get things done with Eli and the other 4.

Tomorrow is my next sono.  Hoping for some answers, but not holding my breath for good news.  I'm assuming that the cysts haven't gone away.  I'm just trying not to worry about it and wait and see what the doc says.  They changed around some of my meds, but so far no change.

Will update more soon.  I try to keep up with the updates but time just slips away!

Wednesday, November 3, 2010

Wednesday Evening Check In

Eli ended up back at the hospital on Tuesday to have tube placement rechecked.  The tube was in a good spot.  They decided that the gastric motility is probably what is causing all of the excess bile and such because the stomach is simply not moving everything down.  They were able to get him hooked up to 1 drain bag, and that should last us a few while we attempted to find them and get them covered by insurance.  His doctor is starting him on eryped to try and help with gastric motility.  Right now we are only putting it thru the J port though so I'm not sure if it will be quite as helpful.  His motility GI also called and said Eli has to be able to swallow 10 swallows for the motility testing.  He can't swallow 1 anymore.  Humph.  His pulmonologist also called and thinks that this horrible cough is because of everything still being inflamed and upset from the pertussis and reactive airway disorder and pulmonary hypertension.  I don't really understand why it would have all just started again, but I'm clearly not the specialist either.  She is starting him on a steroid and restarting xopenex treatments.  Not sure what the cardiologist will think of the xopenex as it increases Eli's heartrate so we'll need to keep him on his monitor during and after treatments.  We are going to try to keep raising his night feeds a bit over the next few days to see if we can get our full intake in each 24hrs.  Right now we are 150cc short, which is 5oz, so quite a bit.  It looks like we will end up around 19hrs a day on the pump.  Not ideal, but as good as it's going to get right now.  He's resting comfortably and even did a bit of tummy time today and some sitting!  He's my happy little dude!  I'm so glad he's as relaxed as he is!  He handles all of this so well!

The older 4 are pretty good.  Ben had his meeting with comcare this week and has been referred to a psychiatrist to get some meds resituated.  They are also hoping to start some play therapy.  He began working on his social interventions program yesterday and that will run the course of the school year.  His speech teacher will also incorporate some of that into their time as well.  Hopefully we can teach Ben some of the skills needing for handling some of the tougher situations with his peers.  Ben starts gymnastics tomorrow, and swim on saturday.
Ari is good.  Busy as always.  She has school tomorrow and starts swim on Saturday.  She will get atleast 2 days a week in the pool and she is super happy about that.  She really enjoys the water!
Emily and Jace are both busy with school.  They are at school all day, do homework when they get home, and then head outside until dinner.  As soon as they are done eating they are back outside until it's dark.  They enjoy being outside with the neighbor kids and having some freedom.  Emily loves being older and staying up late.  She plays on her computer and listens to music.  She's pretty good about turning everything off at a reasonable time, and gets her self up without any fuss each morning so we give her the freedom.
Bob and I both had our med rechecks today.  They are going to again adjust my meds and send me to another doc for a 2nd opinion.  It is definitely looking like my ovaries will ultimately have to go as well.  My next sonogram is next week, to see if the cysts have shrunk but from the discomfort we are assuming they haven't.  They are starting Bob on a new med for the IBS, doing additional lab work for the rheumatologist, and waiting for his genetic testing and GI surgeon appt at the end of the month.
Other than ALL of those things not much new around here.  lol.
more updates soon.

Monday, November 1, 2010

Update from Eli's procedure

Eli checked in this morning at 9:30.  It was a bit harder to get the GJ placed than expected.  His stomach apparently has poor gastric motility and a very narrow pyloris valve.  It made placing the J a bit more complicated.  There was a lot of confusion after we left.  Nobody knew what to do for feeds, meds, nothing.
Got home and Eli started gagging and choking.  Called doc, they paged the surgeon stat.  Decided to start his feeds slowly and to vent his G continually.  The G has had a ton of stomach acid and bile.  The J feeds have been going slowly.  He's had alot of coughing and gagging and choking episodes.  His heartrate has been running high, and his lungs sound wet and raspy.  We had to page his doc and we were on the phone for over 20 minutes trying to figure out what to do next.  Right now we changed some things and we are trying to kep him on his right side. 
I'm just not sure what we are going to do next.  We just can't seem to figure this out.
more updates tomorrow.

Sunday, October 31, 2010

Halloween 2010

The kids had a great time trick or treating tonight.  We live in a GREAT neighborhood with TONS of kids.  Every house was lit up.  They have sooo much good stuff.  Everything from full sized candy bars, to tattoos and whistles and stickers and drinks, and huge goody bags.  After trick or treating they came home and are having fun passing out candy to everyone.
Here are a few pictures!

Saturday, October 30, 2010

Saturday Evening Update

Well life is never simple.  Eli had a major choking episode on friday.  He was not able to get air moving for around 1 to 1 1/2 minutes.  SUPER scary.  Called the surgeon.  She has decided to switch his GTube to a GJ Tube.  We have soo many mixed feelings about this. Here is a great website for those who don't know/understand what a GJ tube is Complex Kids Website .  Basically instead of the food going into his stomach it will go into his jejunum, which is the small intestines.  By doing this hopefully it will keep him from refluxing and choking and aspirating.  There are obviously alot of downsides as well, that definately concern us.
Eli checks into the hospital monday morning and it's done in interventional radiology.  It's an outpatient thing.  We'll see how it goes.

In other news.  Emily is at her grandparents for the weekend.  It's her bday present from them.  She's hanging out, eating out, and shopping, all sibling free!  Jace had a bday party this afternoon.  Last night Ben had respite, Eli had a nurse, Emily was gone, and Jace and Ari had a babysitter.  SOOO Bob and I went out for a bit.  Dinner and a movie.  It was nice.  We also ran by the Y and got all the kids signed up for their next month of Y classes.  Ari will still do her Kids day out, Ben will do gymnastics, and the older 4 will all do swimming lessons.

Tomorrow everyone heads off to church,  leaving Bob, Eli, and I.  Hoping to go on a walk and get some laundry done.  Super exciting!
More updates soon!