Thursday, June 30, 2011

Quick Thursday updates

still here.  Just busy. 
This week has been Emily's girl scout camp.  She got hurt her 1st day there but has done well the rest of the week.  She's enjoyed it and met friends.  We are so glad that she's done well. 
We have kept the others fairly busy.  We've been swimming, to the Y, to dinner and a s'mores roast at a friends house, on walks, had special snacks, and watched movies!  :)  Today we are going to a friends for a special craft project!
Eli has struggled this week yet again with his weight and hydration.  He also had constipation issues this week.  His docs are all talking to try and figure out what next.  My little man lost another 3 oz today.  He's going to wheelchair clinic today to see about getting his straps fixed on his chair.
We are super nervous about these next few days with this horrible heat coming.   We are travelling tomorrow and it's supposed to be 103 here and 105 PLUS in Wichita.  Hoping my cars AC can keep up with that as Eli's body sure can't.
More updates soon.

Monday, June 27, 2011

Monday Morning Memos

Yesterday was a nice day.  We played games and hung out in the morning.  We let little man get a nap while we all ate lunch.  Then we headed out to our local rec center for swimming.  They have the most amazing indoor pool.  There are 2 separate pools.  The one we spent the most time in never goes deeper than 3ft 3in.  So the little ones were able to stand and be in the entire pool.  It is a zero depth entry with a big water stand that flows along these big gutter lines.  You can block the water and manipulate it.  Then there is a huge tower that randomly dumps bucket, big spray areas and fountains, a lazy river that was beyond fun for the kiddos, and a huge slide.  They also had noodles and swim paddles and such.  Then the 2nd pool had a medium depth area for the older 2 with water basketball and such.  As well as swim lanes.  The oldest 3 went down the slide more times than I can count, and everyone enjoyed alot of rides around the lazy river.  Eli wasn't sure what to think of the water, and was very nervous at first.  He never specifically played in it, but did relax a bit and enjoy just being held in the water.  About 45 minutes into it he started getting really fussy and his skin was cold and moddled.  Bob and I took turns keeping him out of the water and cuddled up under a towel tucked against one of us.  He was beyond exhausted and darned near crashed on us.  He at this point got super hot and red and splotchy.  Gotta love issues with controlling body temp.  In the end we were at the pool right over 2 hrs.  Everyone had a great time and we will definitely be going back soon!

Today Emily starts girl scout camp.  She's excited to go and meet people and try out all of the activities.  The boys aren't quite as happy about her leaving!  :)

Yesterday I re-posted something that has been circulating around facebook.  It was something that greatly touched me and brought tears to my eyes.  It was an author unknown piece, not something I take credit for at all.  It was beautifully written and an amazing tribute.  I hope everyone else enjoys it as much as I do.

This coming weekend we head back to Wichita for the holiday.  The kids are excited to see their grandparents and I'm excited to get together with my friends.  Bob and I are even going to sneak out for an evening together!  It will be nice to have a bit of time with everyone to just relax.

Today Bob is at a job interview.  Fingers crossed that all goes well.  Then this afternoon I need to get a menu finished up and head to the store.  We are on vegetarian week 2.  The kids are doing great.  Last night we again tried a new recipes and everyone loved it.  We've had to reconfigure our fridge to allow room for all the fruits and veggies.  There are so many things that I never thought I would like, foods I have never been willing to try...my kids are the same.  But we have been experimenting and trying so many different foods and so far haven't found many things we don't like.  I'm so proud of our journey into a greener healthier lifestyle.  The kids are doing amazing and we are hardly getting any complaints at all.  Makes us more excited to take our next steps in the next few weeks!

Upcoming this week:
Emilys camp...Eli's AFO fittings, 4 different therapies, Eli's new glasses, new meds, new appts schedualed, feeding/weight issues figured out for tiny man, new vegetarian recipes, our trip to wichita.  (I think that covers it but our week is constantly changing!)

More udpates and pics soon!

Sunday, June 26, 2011

Some Mothers Get Babies with Something More....

SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

author unknown

Saturday, June 25, 2011

Updates and Pictures

Our kiddos had a great time at VBS.  They met alot of new friends, learned new songs, made lots of cool crafts, and played lots of games.  On their last day, Friday, we took tiny man and went for their assembly and stayed for the carnival.  Here are a few pictures from VBS.
Our good friends kiddos and ours.  youngest to oldest.

Eli and his best friend

our good friends kids and our kids!




Eli enjoyed getting to go out and see people.  All in all he's done pretty well.  He's been running a low grade fever of and on.  He's also been super fussy.  I have had to talk to his dietician multiple times lately as Eli is losing weight.  We have upped his feeds 3 times now and he's still losing.  We are on this current increase until monday and then we up once more.  If that doesn't work it's in the doctors hands.  Here are a few pictures of my tiny from these last few days.
Eli and his puppy (from his best friend pictured above with him)

My super silly little man
Today I went and got my hair done. I got it colored and cut and I love it!  Here's a pic!

Tomorrow we are taking all of the kids swimming.  They are really looking forward to it.  We found an indoor pool at our local recreation center with the zero depth entry.  It will be perfect for Eli to actually get to go with the family and enjoy water, without having to deal with the heat of outside.

This week wrapped up our 1st full vegetarian week.  As many of you know we have been slowly switching our family over to vegetarian food for the last few months.  We started with 1 meal a week and slowly increased as we found more recipes and experiment more with foods.  This week we had only vegetarian.  Lots of fresh fruits and veggies and lots of super yummy cooking.  The kids did great with it and we are really loving it.  We also made more household changes.  We've done cloth diapers, we've used towels and such instead of paper products.  This week we also made our own household all purpose cleaner, dish soap, toilet scrub, window cleaner, and laundry detergent.  We've taken the process slowly and switched over 1 item at a time.
We'll see what's in store for next week!  :)

Wednesday, June 22, 2011

Quick Updates

Multiple calls from docs yesterday.
Eli's main pediatrician called to again discuss all of the test results and what the "plan" was at this point.  He is getting all of the orders done for all the new meds, a well as for the AFO's, car seat testing, and endocrinologists.  He agrees with the possible need for growth hormones although he definitely wants the endocrine doc to deal with all of that.  Discussed the fluid needs and all of those things a bit more as well.
Also got a call from the urologist saying that he urine catch looked good.  Everyone is assuming at this point it is in fact a hydration issue not a kidney issue.  So that's good.
Eli has also been offered a spot in a preschool class starting this fall.  It's thru his therapy center.  He would go 5 days a week for 2 1/2 hrs each morning.  He would get intense OT, ST, and feeding therapy.  We aren't sure if this is something we are willing to do, as he will only be 20 months old when class begins.  It is something we are thinking about, but no firm decisions.
Eli also met with his in home speech therapist this last week.  She brought him a signing language DVD and he watched it for the first time yesterday.  He enjoyed it.  We are pushing more and more with signing and hoping to start seeing some glimmer of understanding soon.  We are also working alot on mimicing and hoping to see some soon as well.

Eli has struggled a bit these last few nights with his O2 levels and has dropped pretty quickly after falling asleep.  No other symptoms so far so we are hoping it's just one of his weird body phases that he goes thru sometimes.

The oldest 4 are busy this week with VBS.  They are really enjoying it.  It's been a great time for them to get out and meet new people.  This weekend we are going to go swimming for the first time and the kids are super excited about that.  It will be Eli's 1st time ever to go to  a swimming pool.  Hopefully he enjoys it as well.

Bob and I are about the same.  Just making it thru each day.  We are hoping to get back to the gym next week and really looking forward to having that time to exercise and de-stress a bit.

I will update more later this week as we have more info!

Monday, June 20, 2011

Neurologist, Optometrist, and Speech

Eli's neurologist called today.  He and I spent almost 20 minutes on the phone.  He simply discussed all of the test results (which by this point we already knew).  He also discussed all of the amino acids and vitamin supplements that he wanted to start.  He is upping his levocarnitine since he's been on that for months and his levels are still showing major deficiencies.  He also discussed a sick plan that needs to be in place.  Fast fluids, and using d10, also quick use of TPN as needed and all of those types of things.  He agreed that these things can't wait on a mito kid like they can on a "normal" child.  He is going to get a full care plan put together as well as get all of the meds situated.  He also is sending out a referral to the endocrinologist as he's concerned about Eli's lack of growing and excessive sweating with sleep. 
I'm so hoping we are finally moving in the right direction with all of these test results.

Eli also had an appt with his new optometrist today.  He says there was just a slight shift, but not enough to change his script.  We also discussed Eli's light sensitivities.  He is going to change Eli's lenses over to the transitions lenses so he will have some protection from bright lights.  He is going to see Eli every 3 months to keep a close eye on the health of the retina, cornea and optic nerve.  He is also sending Eli to an opthamologist so they can keep a close eye on if surgery will be needed in the future, although it looks like glasses have been working well.  They are getting glasses ordered so he will get his new ones in a few weeks!

Eli also had his in home speech today and did pretty well.  She has brought him a signing DVD and wants to see how he responds to it.  We've also started the process to get an IPAD.  We like his new in home speech therapist and are excited to see how Eli progresses with her.

Tomorrow begins VBS for the older 4 and they are excited to go and meet new people!

Sunday, June 19, 2011

Family Updates

I haven't done a family update in a while so it seemed like a good time!

Emily ~ Alot has been going on with her.  She has joined the girl scouts first of all.  She had her first get together last week.  They made shirts and SWAPS for camp.  She will be going to camp with them the last week of June.  They will spend 4 days and 1 night at camp.  She's excited and a bit nervous.  She has always struggled a bit with making friends so this will be a great experience for her!  She will be going to VBS this next week and is also looking forward to that.  She has met a few friends in the area and has spent some time playing outside with them as well.

Jace ~ He's doing sooo much better.  He had an appt last week with his pediatrician who got him in immediately for an appt with a doctor who specializes with special kiddos and medications for them.  She agreed that Jace's meds weren't right AND that his diagnosis wasn't quite right.  She agreed with the ADHD but also says he has an impulsivity / reactivity disorder.  She has added a new med and given some creative ideas to help deal with the anger and physical violence.  She said that ultimately the med will probably need to be doubled and a 2nd med added but wants to take it slow.  We have already seen a huge change in his behavior.  It isn't perfect but sooo much better already.  The ideas to deal with violence also seem to be helping some.  He will meet with her frequently as things get adjusted.  Jace will also be going to VBS next week.  He has met multiple kids in the neighborhood as well.  A little boy has spent alot of time over here and there is also a little girl Jace's age who says she loves Jace and has pinned him to the ground and kissed him!   :)

Benjamin ~ Ben is doing ok.  His meds aren't working well either.  When we moved they were in the middle of getting him to the right dose.  He will be meeting with the same doctor that Jace is meeting with.  He has also met a few friends in the area and has played a bit outside with everyone.  He is mostly enjoying having a large house with 4 floors to roam around.  He enjoys having his own time and space to be in.  He will also be going to VBS and is looking forward to it.

Ariana ~ She's the same little diva as always.  She struggles to find her space in her siblings.  She's younger and so girly.  She doesn't share the same interests as everyone else.  This can cause alot of issues sometimes.  She will hopefully be going to PreK in the fall and we are really hoping that helps her settle in a bit more.  She will be going to VBS as well and she's very excited to finally be old enough to attend!

Elias ~ He's doing ok this week.  A bit of a struggle with the heat, so pushing more fluids.  He's still losing weight and noboby is sure why.  His feeds have been upped twice in the last 10 days but the weight is still coming off.  He's been incredibly clingy and wants Bob or I to always be holding him.  Makes for fun times trying to get things done! 

Bob and I are ok.  Just trying to get life resituated.  He got all of his unemployment papers finished up online and now we wait.  He is applying for all the jobs he can possibly find.  We are hoping to find a job soon.  Unemployment is lovely in theory, but a job is our preference. 

Today we are going to spend the day out and about as a family.  We are going to the Art Museum for the day and then home for one of our family favorite dinners and a dessert of Bob's picking!  The kids are going to help me make the dessert for fathers day!  They are super excited!

This afternoon or tomorrow I will get pictures up from our day out today!

Happy fathers day to my dad and my husband!  You both are amazing and I can't imagine life without you !!!!

Wednesday, June 15, 2011

Answers

I am sitting here with an envelope full of 69 pages of Eli's report.  We got it this afternoon and have already read thru it like 5 times.
Stage 1 of our journey has finally ended.
We found out at 18 weeks of pregnancy on July 28th, 2009 that there was a problem with our little man.  We found out today at 18 months of age what that problem is.

Eli has Mitochondrial Disease Complex I and Complex III and OXPHOS.  He also has multiple deficiencies, immune system issues and multiple other things. 

I am sooo relieved to finally have an answer, but heartbroken as well.  Not having 100% definitive results gave that tiny glimmer that they could all be wrong, and that glimmer is completely gone now.

We are unsure what's next.  Atlanta wants Bob and I to come for a long sit down talk with them.  Eli's pediatrician here is getting rush appts with neurology and genetics.  
I am slightly dazed as I can't believe we are here, that this is truely the road we are on. 

Right now I don't have much to say as we as a family are still trying to absorb it all.  I will update more in a few days.  Right now I just need to snuggle my little man.

Monday, June 13, 2011

results are in KC

We got the long awaited email this morning.  Eli's results are in.  They have been sent from Atlanta to his doc in KC.  I have already talked to both offices this morning.  We are waiting for the doc here to get them and read them over and then decide if he wants to meet in person or if he will give them over the phone.  Once we have spoken with a doc about them we can have our own copy.  I'm so anxious and nervous and scared and fidgety.  For those new to Eli's journey these are his Mitochondrial results.  They ran 27 tests in April and the answers are finally here.  i will update today as we know more.

Sunday, June 12, 2011

Back for real this time!!!!

I apologize for not actually getting back on and updating.  We got internet and our computer promptly crashed.  It was unfixable. 
It's been a LOOOOOONG week.  Alot has happened and I'm not even sure where to start.
We have been interviewing, orientating and training nurses.  This has been such a long exhausting process for all of us.  We MAY be at the point where we have a good staff but unfortunately it's to early to tell.  When finding nursing there are so many things to consider.  Are they in general a good nurse?  Are they a good pediatric nurse?  Are they a good personality fit for Eli, us, and the kids?  How are they with schedules and flexibility?  It's just way harder than good nurse, done. 
Eli has also been getting situated with therapy.  He is going to physical, occupational and speech therapy at a center based therapy group.  We are really impressed with them so far and are happy with their current goals for him.  He will also have inhome based therapy, mostly focusing on communication.  The goal is to get Eli an ipad going and to begin working on a PECS based communication as well as still presenting him with alot of signing opportunities.  Eli tried a pair of shoes this last week and his feet immediately buckled them out.  His PT wants him in a good high top shoe and his doctor has send the orders over for AFO's.  His OT is working on alot of sensory things and trying to introduce him to a wide range of different textures.
He also had an appt with his pediatrician/medical complex doctor.  We love him and think he's a great doc for Eli.  We all met for almost 3 hours.  We went thru each and every system and doc and discussed where we were with each and what we needed next from each.  He is getting Eli into an eye doctor up here to get his glasses fixed and get his eyes re-checked to make sure his script is still good.  He is also getting him into the car seat clinic to get him fitted into a special car seat to put him in a better position for breathing while in the car.  He's getting in touch with the pulmonologist to get O2 added to his CPAP so we won't have to keep switching back and forth between the 2 at night when he drops.  He also agrees with the neurologist about Eli being functionally deaf.  He agrees with getting him into the Kansas school for the deaf and pushing forward with the ipad and signing.  We went thru all of Eli's equipment and all of the supplies that we have and all that we still need.  We also discussed Eli's struggle with the heat and hydration and with his decrease in urine.  He has a call into the urologist and is considering getting Eli into an endocrinologist. 
Eli also met with his cardiologist this week.  His cardio is going to go back and look at each ECHO and try to determine if the leason is in fact growing or if it's simply measured from a different angle or what not.  We will wait to hear back from him soon.
Eli started running a fever yesterday morning which of course brought on the high heart rate.  He still has both today but no other symptoms.  We are hoping that it doesn't turn into anything more.  He got to go out for a bit yesterday afternoon and today.  He enjoyed being outside and getting to watch people around him.


My parents and Eli's nurse from Wichita, Paula, came up to visit for the weekend.  We celebrated Ben's 6th birthday.  Saturday we went to Legends and had lunch at T-Rex.  This is one of the coolest restaurants and the kids absolutely love it there!  We had a great time visiting with everyone and Eli was beyond happy to have his paula paula for a few days!

The last piece of news is in regards to Bob's job.  His employer had been working to team up with another company and launch their partnership.  So bob and many other people were hired for this launch.  It didn't happen, and didn't happen.  So many delays.  On Friday a group of them got laid off...bob's group was one that did in fact get laid off.  We are confident that he will find another job quickly but it doesn't change the fact that we definitely weren't expecting this massive bump in the road.
Like always we will simply stick together as a family and get thru all of it. 
Alot of things going on right now, some that I can't mention right yet, but we definitely could use any and all prayers and positive thoughts possible!

Here are a few pictures from this past weekend.
The 7th of us

The 7 of us plus my parents and paula!

Paula and Eli

My dad and the oldest 2 boys

My beautiful Emily

My incredibly goofy Jace

My ridiculously adorable birthday boy Ben

my tom boy princess ari

My super big smiling tiny man

Monday, June 6, 2011

Super quick check in

I'm exhausted and Ben is screaming so this will be beyond short.  I just wanted to pop on now that we finally have internet.  We are all still here, just finishing up unpacking and getting the house organized.  Just got internet hooked up and situated this evening. 
I promise to get on tomorrow for a full update!