Thursday, March 31, 2011

I give up ***UPDATED***

The ENTIRE universe hates me.  There is no other answer.  I was going thru all of Eli's papers for Atlanta, and the timelines.  The paper states to call the surgery center 5 to 7 days before surgery if you have a medically complex kiddo.  So I call.  The nurse tries to tell me she doesn't need to talk to me until the day or two before.  I insist that she needs to talk to me NOW.  As we go thru his meds and his information she's like WOW.  She gets the anesthesiologist and he's like, OH HELL NO.  I'm called back 5 minutes later and told that Eli is way to high risk and complicated for them.  They back out and say they can't do his procedures.  So here we are.  We begin our drive in just a few days and we have NO place to do his muscle biopsy and spinal tap.  I called the docs office and she's like holy crap.  So she is rushing around trying to figure out what next.  I'm exhausted and frustrated and moments from curling up in a ball in the corner and crying for 3 days.

Eli's doctor was able to get the surgery schedualed at Children's at Scottish Rite in Atlanta.  So the procedures are still a go as of right now.  They are getting all the papers done and he will need to meet with anesthesia the day before and all of that.  Now everyone is calling around to try to get orders on what to do with his Lovenox.  Obviously the blood thinners need to be stopped BEFORE cutting him open!  :)  I will udpate as we know more!

Wednesday, March 30, 2011

Ground Not Air

Today has been a super stressful day.  I spent another day rushing around making calls trying to find O2.  We simply can't get it.  They don't make infant concentrators to do what he needs.  You can't take cannister O2 on an airplane.  Eli can't fly without O2.  So it's done.  We will have to drive.  It is a 17hr drive.  We will have to stop halfway there, so the trip will take 2 days each way.  Eli doesn't do very well in his carseat.  He doesn't maintain his O2 sats very well, gags frequently, struggles to maintain his body temp, and in general gets super fussy.  It's going to be quite the fun trip.  And lets not forget that the return trip is the day after his muscle biopsy and spinal tap.  So he's going to be sore.  I'm frustrated and stressed and I know I'm sounding super grumpy.  Everything with this trip keeps falling apart and I just can't keep up and constantly find ways around the obstacles.  To top everything off we aren't quite as set for the older 4 kids care as we thought we were.  So I'm also scrambling to get that done.  Mind you we leave in just a few days.

Bob was out of town all day today in KC.  He's home now.  I'm tired and  I'm stressed and the kids are in rare form tonight.  Ben has spent most of the evening screaming, Jace yelling at Ben to be quiet, Ari running in circles chatting up a storm, and Emily rolling her eyes frequently.  YIPPPPEEEEE.

Tuesday, March 29, 2011

roadblock after roadblock

I'm missing just being a mom.  I spend so much time on the phone or emailing or faxing or organizing papers or dealing with insurance companies or whatnot.  Since our travel dates for atlanta were confirmed I have spent every single day from 8am to 5pm dealing with issues, and afterwards I'm still working on my paperwork and trying to figure out what next and which way to go the next day.  I haven't spent any time on the floor just getting to play with my little man. 
I just want to be a mom.  But it's not possible.  Eli NEEDS these things.  They are required for his health and well-being.  I don't know how to balance it all.  How to get some things to simply run on auto-pilot.  I don't know when it gets easier, heck I don't know IF it gets easier anymore.

Flying to Atlanta has been one of the biggest obstacles.  We can't find an infant O2 airline approved concentrator for any less than $800 PLUS.  So it looks like we are going to have to cancel our plane tickets and drive to Atlanta.  Eli isn't stable enough to make the flight without O2.   This will mean a 17hr drive with a medically complex baby.  YIKES.  We will have to break it into 2 days, which means finding hotels along the way.  And then we will have to do it on the way home as well.  We aren't holding our breathe that Eli will be able to handle 17hrs of driving either. 

Eli's gagging has also gotten considerably worse.  He isn't handling any of his meds right now, G or J.  The moment you start putting them in he starts gagging, his eyes completely dialate, and he turns so many lovely colors.  Calls into the GI again.  They are hoping to get the PH probe done sooner, but with us leaving for Atlanta this may not be possible. 

More updates soon.

Monday, March 28, 2011

Monday Check In

This morning Eli had a check in with his local pediatrician.  All went well.  She will see him again after we get home from Atlanta.  The rest of the afternoon was spent trying to get his O2 for the flight figured out.  We aren't making much progress.

Bob had a check-in at the doctor for an emergency room follow up.  They sent him for more xrays.  It shows no break, but they are concerned about the numbness and massive swelling.  They'd like to consider an MRI.  Decisions made tomorrow.  The swelling is definitely gone down some, but still there. The bruising is ALOT. 

The older 3 headed back to school today.  Emily was excited for Spring break to be done.  Ben was so-so.  Jace is counting down the last 2 months until summer.  :)

Tonight we tried another vegetarian meal.  The kids are doing great with it!  Our meals are about 25% solely vegetarian at this point, and even on the meat meals it's minimal, with TONS of veggies.  Bob and I are enjoying trying out so many new recipes and the kids are loving eating all of it!

Not much else new.  Just wrapping up alot of stuff for Atlanta next week.  More soon.

Saturday, March 26, 2011

Home from KC (i say that alot i think)

We are home for a week.  This was a long exhausting trip.
We got into Kc Thursday afternoon.  Bob had his interview and I went to a friends to hang out.  They have 3 girls, their youngest is 2 yrs old and she also has Mito and a feeding tube.  We "met" online at 1st thru support groups, and then met in person when Eli was rushed by ambulance to the childrens hospital in KC in January.  We've gotten to be good friends.  After Bob's interview we all hung out and had pizza!  Bob's interviews went well, they will make choices next week.

Friday was holy cow long.  8 appts in 8 hrs.  His echo showed the clot to be 3 by 3.  1st it was 6 by 6, then 4 by 7 and now 3 by 3.  So good progress in the right direction!  They still obviously want to continue the blood thinners and will do his next echo the beginning of May.  During feeding therapy Eli had almost 10 tastes of applesauce.  Some of them were super tiny, and it did take 45 minutes to get it done but I don't care!  He did awesome!!!  Nutrition said he looks good, super chunky.  She is leaving his feeds right now at the 18hrs a day and hoping the weight gain starts to slow down.  With the CPAP now we are realizing how much energy he was using during sleep before now.  It's amazing.  He go his hearing aids next.  He is doing really well with them so far.  There was so much information and learning.  I was so nervous.  He will be rechecked on those the beginning of May as well.  She gave us a journey to chart how he seems to be.  So far he is looking around alot.  Not sure if it's such a new world being able to hear things.  Time will tell.  He met with his GI doc about all of the gagging episodes.  He is wanting to run a PH probe as he's wondering if there is some refluxing going on again.  His anti-coaguation levels showed good, so no changes there.  He also got all of his hip xrays done but we haven't gotten those results.

We were so exhausted by the time we left the hospital, and Bob's foot was so swelled up he could hardly walk.  We grabbed dinner and headed back to the hotel.  Eli was asleep around 7 and Bob and I by 9.
We headed home this morning.  Eli made it to about 7 tonight and was just done.  I have a feeling bob and I aren't to far behind.
The 4 older kiddos will be home tomorrow after church and life can get back to normal, atleast for a week!

Thursday, March 24, 2011

Quick update before hitting the road

Heading to KC today.  Bob has a job interview today and tomorrow brings one of Eli's busiest days.
He has Hematology, Cardiology and his ECHO, feeding therapy, nutrition, hearing aids are in with speech and audiology, GI, his pediatrician, hip xrays, and his lab work.  We will be there from 8am until around 4pm.  I don't even want to think about how exhausted and crabby he will be.  The plan is to come home early saturday morning.

Yesterday was a rough day.  Alot of issues keep coming up with this Atlanta trip, mostly involving the flight.  We appeared to finally get them all resolved late in the day yesterday but we won't know for sure until later today.  I'm just ready for the trip to be done, and this to just be another thing behind us.  I'm exhausted.

I will get a longer update up after KC.

Tuesday, March 22, 2011

What a Day!!

It's been a day of WOW.  The day began with a grassroots cookie selling fundraiser!  It has ended with donations coming in from all over the world and a donation page, plus more in the mail. 

We have had to switch DME's due to insurance today.  This was a mess.  Paperwork is mostly done but now the logistics of having to switch over a whole lot of equipment and supplies and information.
We've fielded phone calls galore dealing with Eli's flights to Atlanta.  There is more paperwork than I could have ever imagined.  So many things need done and so many approvals.  We are unsure if it's going to all get done on time.  The doctor missed 1 little box on the form and oxygen details on his typed letter.  So we have to start all over again.  Unsure if we will get it done in time.  We may end up having to travel which means 2 days of driving EACH way, and extra nights of hotels.  Not something we are looking forward to.
There was a point today where we thought we may have to cancel the entire Atlanta trip, atleast reschedule.  An unexpected upfront cost came up with the surgery center that we hadn't expected and hadn't budgetted for.  A dear friend of the families heard about it and within an hr she had personally paid 20% of his surgery fees that were left after surgery.  We again don't have the words to describe how absolutely blessed we feel.  The love and support and encouragement from people all over the world is definitely felt right here in our home.

This afternoon Eli finally had his seating appt.  We were there for 2 1/2 hrs.  Every drop of his body was measured and he spent time trying out different wheelchairs.  When he set in the Tripod we knew it was the perfect one, the one we would pick.  So it's official.  His very 1st wheelchair has been ordered.  He is getting it in orange to match his house color!  Perfectly fitting.
TriPod  Eli's will of course be way smaller, and the pieces that are blue will be orange.

I am overwhelmed right now.   Everything is moving so fast, scary fast.  My little man is growing, we are seeing the age changes in him.  Sometimes I look at him and am amazed at how big he's getting.  Then I watch him take a few crawls and get so tired he has to lay down and take a rest before he can do it again.  He was rolling and crawling a bit at seating clinic today, and I watched as he got so tired, his face bright red, his hair soaked in sweat, his breathing becoming so labored.  All from rolling a few times and making a total of maybe 10 crawls over 45 minutes.  It breaks my heart to watch my little man so determined, the sparkle in his eyes as he wants to so badly.  He wants to go, he wants to do it, but his body just can't keep up.  I'm so excited for his wheelchair to be in in a few weeks, but I can't believe I'm here, that I'm doing this.  My son is getting a wheelchair.  One of the factors on what I picked is how I can configure all of his medical equipment on his wheelchair.  They therapists and specialists chatted about how they hoped this wheelchair is hoped to last him until he's 3 and at that point we will move onto a powered wheelchair as he will probalby never have the strength to push himself around.  I listened to her talking to me about needing to wheelchair proof my house, and all the modifications we will need to make over the next 2 years. 

It terrifies me to the point of panic sometimes to think that this is my life.  This is truely my life.  My son will never be what I had imagined he would be.  He will never be able to do the things other little ones get to do.  Each new piece of equipment tells me more and more how life is shattering around my tiny little man.  Yet he smiles and laughs and plays peek-a-boo and tried his hardest to chase his sister as she passes thru his play room.  He doesn't realize it's not how it's supposed to be, and that alone breaks my heart.

He is special, and amazing and the things I have learned from him will be forever a part of me, as he has changed me, more than I could have ever imagined.

"Children with disabilities are like butterflies with a broken wing. They are just as beautiful as all others, they just need help to spread their wings..."

Last but not least you can donate on Eli's page at Eli's Fundraising Page

Thursday, March 17, 2011


I don't have alot of time for a full update but just wanted to come on and hit the big new info.
We got the call today.  Eli's paperwork is done, insurance approvals finished, referrals in place.  Dr Shoffner agrees and wants to move forward.
Eli heads to Atlanta on April 4th.  He will meet with Dr Shoffner on April 5th and have metabolic testing.  Then on April 6th he will have his muscle biopsy and spinal tap.  I can't believe this is happening.  It's a whirlwind of feelings and emotions right now.
Calls are already being made to get flights and lodging figured out.  I will update more as we know more.

Monday, March 14, 2011


It's not always as easy as it sounds.  How do you compromise between the life you used to have, the life you want to have, and the life you are forced to have?  How do you find a compromise between 1 childs medical needs and 4 childrens wants and desires.  How do you compromise between time and money and desires? 
These are a few of the questions that Bob and I are facing right now. 
Medically it is best for Eli to be in Kansas city.  Financially it would also be helpful in the sense of not such an expense of such a massive drive and lodging and food and such.  Time wise it would be nice to not have to spend so much time in the vehicle.  Eli struggles with the drive, heck so do I lately.  The drive also means I miss alot of time at home with my 4 older kiddos and my husband.
Staying in Wichita means staying in the house we love, the kids in amazing schools that they love, a  neighborhood that they have friends in.  It means being close to friends and family.  It also means long drives on the road, alot of money spent, and Eli and I missing alot of this time at home. 
A job isn't really an issue either way.  Bob has a job here, yes, BUT he has spent 2 afternoons job hunting in KC and already has 3 interviews.  So that's not the fear.
We are unsure what to do and how to find a compromise.  Either way we are making a decision for only a portion of our family.  Each decision is only right for some.  There isn't a "magical answer" that is best for all.  We know that we are a super strong family and that we will make it thru ANY choice, but it doesn't make it easier.

Today Eli had an appt with his only local doctor, his pulmonologist.  She is going to do an at-home overnight O2 sat levels, as he is still alarming multiple times with CPAP.  We may need to add O2 to the CPAP.  She is also doubling his pulmicort as she agrees with his pediatrician that he may be having asthma attacks.  As always she wants him safe in a bubble away from everyone as they are still seeing RSV in full swing and a ton of other respiratory viruses. 

The older kiddos are pretty good.  Emily is doing well.  She was struggling last week with algebra and after spending sometime this weekend going over it with Bob she did much better on her work today.  Jace did very well on a spelling test and even got 3 out of 5 on the challenge words!  Ben had a rough day today and spent most of it in meltdown mode.  A bit of a struggle when he 1st got to school, but was able to turn it around after that.  Ari was busy this morning, took a nice long nap, and has been outside busy as could be this afternoon.  Everyone has been a bit tired with Daylight savings time, so hoping to get back situated next week over spring break!

Bob will be heading tomorrow to KC for a job interview.  We are continuing to look and talk to people there until we make a FULL choice.  Keep our options open and maybe something will open up one way or the other to help make the choices before us.

Today we also finished up the last of Eli's paperwork for Atlanta.  I'm beyond excited and very anxious.  We are almost there.  Almost done.  The answers are just around the corner and that terrifies me and excites me.  His appt will get scheduled next week, and then all that is left is getting his angel flight paperwork finished up, and a weeks worth of lodging of course!  :)

More updates soon.

Saturday, March 12, 2011

Random Pictures from March

I will still be behind on pictures after this post but not as far behind as I was!  :)  These are just a few pictures from this month!  More soon I promise!
Posing before church one morning
looking beautiful as always!
ben with his super cutie cheesy smile!
Jace unhappy about having his picture taken.  he goes thru phases!
emily getting oh so grown up!
typical way of finding emily!  on her computer!
silly tiny man playing in the curtains.  i love the face!
he played behind the curtains for almost 1 hr.
1st time ever at the park swinging!
swinging with dad
his 1st time down the slide with mom!
Ari sliding
ben trying out the wabble platform
ben being super cute!
emily spinning
jace working his way up the wabble ramp
ari spinning super fast!
emily spinning
jace getting in on the spinning fun

Friday, March 11, 2011

Beautiful Weather

It got up to 73 here today so as soon as the kids got home from school we packed everyone up and headed to Boundless Playground.  This is the most amazing playground ever.  If you have a boundless playground near you I suggest going!  (It is a playground specially equiped for ALL children, including handicap ramps and teeter totters and special slides and such!) 
This is Eli's 1st time.  He got to swing, go down a slide, touch some sensory stations and hang out and watch TONS of kids.
Here is the only picture I have on the computer so far.  Once I download pics from my computer I will post more!

Friday Updates

It's been a busy but slow few days.  Eli has been back to KC once and we head up again this next week.  His coagulation levels were to high so they have switched his dose again.  He has just finished up with his antibiotics.  He was on them for 7 weeks total.  WOW.  His next ECHO is the end of this month, as well as his next hematology visit.  He also has his hearing aids coming in at the end of the month.  He has started choking and gagging and retching alot again.  They did an xray to confirm J tube placement and all looked good so they are unsure what is going on.  He was running a low grade, but it's better today.  He's spending alot of time on the floor practicing his crawling and is getting better on the wood floors.

The older 4 are doing well.  Emily is busy with school and going thru my bookcase!  She's also been doing alot of music searches online and really expanding her library of songs.  We've had a bit of an issue with her staying up incredibly late goofing around on the computer, so we've really had to keep track of that.  Jace is doing pretty good.  He's busy as always.  He has been spending alot of time outdoors playing football with the neighbors.  He's getting pretty good and really enjoys it.  Benjamin is doing pretty well.  He's been spending alot of time playing MarioKart on his nintendo.  It's his favorite!  He's also been working alot on his sight words and he almost has them all memorized!  Ariana is doing decent.  She's busy as always.  Loves playing princess, pony, and dress up.  She's been having fun with her leapster, and is working on learning the Wii.

Bob is off work for another 4 weeks.  They are finally making solid progress on what is going on.  He has been diagnosed with GERD and IBS.  They have also been doing alot of testing and have learned that he has a vitamin D deficiency as well as Lupus and Rheumatoid Arthritis.  They are going to be doing an MRI next week and then are going to be going forward with meds and shots to hope to help with some of the discomfort and other issues.    Hoping that as all of these things get situated he will get to feeling much better.  As of right now some of the medication side effects have been pretty rough.

I'm here, as always.  Exhausted.  I've been having alot of headaches.  I'm sure from lack of sleep, food, water, and lots of stress.  I'm missing my family, I'm missing being home.  Eli and I spend alot of time on the road between here and KC.

Saturday, March 5, 2011

KC Appt update

It's been another busy few days.  
Eli had his appt in KC with the head of the medically complex kids clinic.  We spent 4 hrs meeting with the team and the doctor.  He will be Eli's PCP.  We are super excited about this.  He is getting everything organized and is working up a full care plan.  He was very disappointed by Wichitas lack of testing.  He's ordering a ton of tests and appts to get a FULL baseline of every one of Eli's systems.  He also agrees fully with alot of the paths we are already on and is more than ready to jump on board and take over. 
I'm beyond excited and relieved to have someone taking over the role I've been doing.  I'm ready to sit back and just spend time with Eli and my family.  The coordinator is getting all of Eli's records, all of his testing and appts schedualed, everything.  I will just be called when it's all done and told where to go and what to do for each appt.  Sooo nice!  We are really hoping to finally get some good stability in Eli's medical care and start making some progress.

Today has been a super lazy day around the house.  The kids have watched movies, played their nintendos and hung out.  Tonight Bob and I are going out together with some good friends of ours.  Super excited to get some time out, away from everything!

Tuesday, March 1, 2011

Bob's Appt Updates

Quick update on all of Bob's appts and testing results.  He met with his GI surgeon yesterday and she has officially finished all the testing to diagnose him with GERD and IBS.  He met with the rheumatologist today, and she agrees with the Rheumatoid Arthritis diagnosis, and is doing some final lab work and MRI to get a few more details with the back issues.  The GI started him on 2 new meds, and as soon as the Rheumatologist gets the lab work back she wants to discuss a med and injections.  So we wait for all of that to see how it goes.  He has his days where he feels decent and then his days where he is beyond miserable.  Hoping the new meds help.

The older 4 spent the afternoon outside, as the weather was beautiful!  Tiny even got to go outside for a bit this afternoon! 
Not much else going on.  Like always we are just taking it 1 day at a time, because I couldn't handle anymore than that right now!  :)