Welcome Brookridge Families!!!

Today fliers went out at school!  I wanted to put together some basic information all in one easy place for you to read as you go thru the fliers and hear your kiddos stories of what they are learning next week during Brookridge's Mito Awareness week and fundraiser!
First our family would like to thank you!  The brookridge family is amazing!  Our kids are so blessed to be involved in such an amazing community that is willing to learn and raise awareness about Mitochondrial disease and so willing to fundraise and help the cause!
Secondly we would like to give the parents some insight into what your kids will be learning about.  Each morning there will be announcements with information about Mito.  Below is the Mito facts that will be given.  Each day there will be snipets of information about Eli as well.  I will post those details here on my blog each day.

Monday, September 10, 2012

·         We all have mitochondria.

·         They exist in nearly every cell of the human body.

·         Mitochondria generate 90 percent of the energy the body needs to see, hear, walk, and breathe.

Tuesday, September 11, 2012

·         Mitochondria are like tiny batteries within our cells.

·         Have you ever tried to use something that wouldn’t work because the batteries were dying?

·         That’s what a person’s body is like that has mitochondrial disease.

·         A new (healthy) Battery generates energy for boom boxes, cameras, and flashlights – producing light, sound, and photographs.

·         An old (sick) Battery has a lot of trouble making your things work.

 Wednesday, September 12, 2012

·         Damaged (sick) mitochondria can cause children and adults to have problems in making their bodies work.

·         Mitochondrial disease is NOT contagious, which means you cannot catch it by touching or being near someone with the disease.

·         It is a genetic disease, which means it is part of your family’s health history.

 Thursday, September 13, 2012

·         Mitochondrial disease is the body’s failure to turn food into energy. 

·         How can you help those with mitochondrial disease?

·         Tell your family and friends what mitochondrial disease is.

·         And, join the Tomkins family for a fundraising walk on Saturday, September 15 at the
T-Bones Stadium. 

 

The kids will have an opportunity to bring change (and bills or checks made out to the UMDF) to their classrooms each day and place it in their class buckets.  The class who collects the most will win a pizza party!

On thursday the kids are encouraged to wear green, which is the awareness color for Mitochondrial Disease.

There will be an Energy for Life walk here in KC on the 15th of September.  You can join our team as an in person walker, virtual walker, or make a direct donation to our team By clicking HERE

You can learn more about Mitochondrial Disease by visiting UMDF or MitoAction.  Also please feel free to contact us with any questions that you may have!

Lastly here are some pictures that the kids will be seeing to help understand a bit more about Eli's journey!

 

Our family is always wishing for a cure!

 

Eli's special bed that helps him sleep upright and safely.  Also his oxygen tank,  IV pole, and medical equipment required for sleeping safely.

Eli's medical equipment storage, and 2 fridges to store some medication and all of his IV fluids.  Shelving to store out of fridge meds.  And no little boys room is complete without a toy shelf!

Eli has to wear a special mask when he is in public.  This is not because he is sick, it's because so many others are carrying germs that they might not even realize that they are carrying.  Eli's immune system isn't strong enough to fight off things like a healthy person.

Eli in his wheelchair!  He's able to walk now but tires easily and isn't able to keep up in a public place.  This allows him to be able to move around quickly and easily, but is low to the ground so he can be close to other kids his age!

Eli with his O2 canulas.  He is on oxygen when he sleeps and during the day when he's having trouble moving enough air on his own.  They just sit right inside of his nose and tuck behind his ears.

Eli with his portable O2 tank.  It holds liquid oxygen.  We can refill this tank off of the large metal tank(seen in the bedroom picture by his crib).  This allows him to breath easier by giving him extra support.

Eli using a nebulizer with a mask.  This gives him medication that helps open up his lungs so that he can breath better.  His mask is in the shape of a dinosaur and some are fish.

Elis eyes aren't as good as most people.  One eye doesn't work very well at all so he wears a patch over his good eye each day to help his bad eye start to work more.  He always wears glasses to help him see.

Eli's ears don't work as well, and it is also harder for his brain to process what his ears are hearing.  He's able to wear hearing aids to help him hear better!

Eli's throat and stomach don't work.  Because of this he has a feeding tube called a GJ tube that goes into his stomach.  His tube allows us to drain his stomach and then it has a long tube that goes down into his jejunum (his intestines) and that is where Eli gets his food.  He is on a special formula that is elemental (no allergins) and predigested.  This helps his body not have to use so much energy to process his food.

Because Eli can't eat he has a special cake that lights up and plays music that he uses for his birthdays! 

On the bottom is Eli's GJ feeding tube hooked up to his formula.  The top is called a Hickman, which is a central line.  This is a special long term IV that goes straight into his heart.  This allows us to give Eli all of his water and some medications and it also allows us to be able to draw labs without having to stick him each time. 

This is Eli with his feeding pump and food bag on the left and his IV pump and fluids on the right.  He keeps all of these items in one large bag that we are able to carry around so that he can move about.  He is on both of these pumps for 18 hrs each day.

These are Eli's feet.  Walking can be hard for him and these special leg braces called AFO's (ankle foot orthotic) that are able to help give him more support while walking.


In closing!  :)  Feel free to visit by blog, especially these next 2 weeks.  Next week I will be posting updates from the school events and daily information about Mito as it pertains to Eli and our family.  The following week I will be posting daily logs of life inside of a Mito family! 

Feel free to look around our blog and enjoy!
Again thank you for being such an amazing community for our family!

 

 

 

Primary Care Doc Appt Update

Today we met with Eli's primary doctor.  We spent 1 1/2 hrs talking thru the most recent changes and going over some of the things that need to be immediately addressed.
1.  We discussed Eli's lovenox.  His levels are a drop over and the dosing is a real struggle.  Right now it's coming in prefilled syringes made for adults.  Eli clearly needs a much smaller dose.  It's rough dosing accurately.  He is going to work with the pharmacist to get it switched over to glass vials to draw ourselves.  He is also going to continue weekly lovenox levels until we are at a safer dosing point.
2.  Eli has been having a few mild nose bleeds but ANY bleeds with a kiddo on blood thinners is scary.  We've had to restart one of Eli's meds for his sleep apnea, but it's a nose spray so this is obviously increasing nose bleed risk.  His doc wants us to try some new drops to help keep his nose over moist. 
3.  We discussed the liver.  The last rounds of lab work didn't look bad.  Still elevated but not near as much.  He is unsure if moving ahead with a liver biopsy at this point is a good idea.  Being so new and still trying to get stabilized on blood thinners is a bit of a concern with a liver biopsy.  We are going to start doing liver blood draws weekly instead of twice a month. 
4.  He has put a cap on how much blood can be drawn from the line weekly.  Everyone has been gung ho to get all of their labs drawn, but Eli is paying the cost.  His hemoglobin is dropping quickly and it's causing alot of energy issues for him. 
5.  We discussed Eli's central mixed sleep apnea.  He is in agreement with the pulmonologist at this point.  Eli will move forward with meeting with the ENT and most likely a plastic surgeon.  Their thoughts are remove his tonsils and adnoids, dialate his nasal passages, place tubes in his ears and do his bronch all under one anesthesia.  Everyone is in agreement that the sleep issue really needs dealt with next on the list.
6.  He is leaving 1 dose of iron a day and will redraw labs in 3 weeks.  Trying to see if we can find the balance of not overloading him with iron, but also keep his ferritin levels up.
7.  We talked kidneys.  He wants to get a firm plan in place before the end of the year as to what surgery and when and all that good stuff.  This surgery has been a long time coming and I'm still no more ready now than I was when we found out about his kidney problems during my 18wk ultrasound.
8.  Lastly we are going to be  making some changes to Eli's hypoglycemia protocol.  This will be our first change since Eli was diagnosed with his adrenal insufficiency and started his daily hydrocortisone.  We are going to begin weaning off the cornstarch.  If Eli struggles maintaining his sugars then we most likely switch his IV fluids from 1/2 NS to D5.  We are going to wearn the cornstarch slowly so we are hoping that will help with no dramatic dumps.

They have put in all of his orders for the med changes, lab changes, and all of those things.   We will get it all transitioned over in the next few days. 
Eli is still struggling thru this cold and we are having to do a decent bit of rescue nebulizer treatments as well as a few extra cough assists.  Luckily hydration hasn't been an issue. 

The older 4 are doing well.  The biggest 2 have been busy as ever fundraising for Eli's Energy for Life team.  They are up to $264 on their own!  They also put together a poster and fundraising project and presented it to their principal today.  She is so excited about the fundraiser and awareness week.  Each class will have a competition collecting coins (and bills) and the winning class wins a pizza party.  They will also have awareness facts each day as well as a Wear Green for Mito awareness day.  The kids are working on a poster to present to the class so they can better understand all of Eli's issues and equipment when they see him.  We are so very proud of them and Eli is so blessed to have siblings who love him unconditionally!!

Today was my eye doc appt.  My eyes are a mess.  Which I was already knowing on my own.  My doc has ordered some special contacts and glasses for me, as well as some new prescription drops.  He warned that it's going to take my eyes awhile to try and adjust but he's hoping to be able to bring me some relief. 
All the adults in the house are still sick with this darned cold as well.  It just seems to hang on. 

I will get more updates up as the week progresses!

Sunday updates

We are home from the hospital, we got home last week. 

Me, Bob, Ben, Lauren (Eli's primary nurse) and Eli are all sick with a cough and cold that just seems to want to hang on.  So that pretty much atleast sums up the adults. 

Emily ~ She's busy as heck.  She's participating in choir 2 mornings a week, silver strings (the extra advanced violin for 6th graders) one morning a week, strings 2 afternoons a week, math club one afternoon a week, and private violin lessons 1 evening a week.  This doesn't even cover all her basic classes and homework.  She stays busy.  She finally saved up enough money to purchase her own phone and now has an Iphone.  She's loving it and we love not having her friends calling or texting us all the time. 

Jace ~ He's doing service club once a month and math club one afternoon a week.  He is looking at doing some gymnastics classes but hasn't fully decided.  He's also in speech and is enjoying his new speech pathologist. 
Benjamin ~ He's doing ok with school although he's having a few issues staying on task.  We had an IEP check in last week and discussed some of the changes we were all thinking needed to be made.  His IEP comes up the end of September so we will have a much more intense talk then.  He's enjoying playing with friends after school and is also going to be starting gymnastics.

Ariana ~ She's loving kindergarten.  She's getting in trouble almost every day though as she simply can't stop talking.  Her teacher is learning the same struggles that we have.  Nothing we have done  has been able to break thru this hurdle with Ari.  The good news is she is loving school.

Elias ~ Like I said he came home last week.  We still aren't where we need to be on his Lovenox levels.  Some of his labs are looking a bit better, some not.  His red blood cells are dialated and they aren't 100% sure why.  His protein is also still low even though we've greatly increased it.  He's doing pretty good hydration wise, so that has been a definite blessing.  We met with his geneticist last week and he went over some of his labs and thoughts and such.  Next month Eli will begin some more genetic testing, that will hopefully get us some more answers.  He also believes something is going on with Eli's liver and is working closely with Eli's GI doc on that.  We also met with Eli's pulmonologist and sleep medicine doc this last week.  He believes that Eli's adenoids are enlarged and thinks that's contributing to Eli's sleep apnea.  He is sending us back to our ENT to have that evaluated.  He wants Eli back on BiPAP but wants to get this issues fixed first.  He put Eli on a nasal spray before bed each night to see if that helps some as well.  Another sleep study is probably in our near future.  Never fun.  Lastly there has been alot of talks about Eli's ferritin, iron, and restless leg.  Eli has been taken off 1 dose of his iron supplement to see if that helps his iron levels any.  Eli's issue has always been that his iron levels are ok but his ferritin is very low.  That's proving harder than expected to supplement.  We are unsure if we will have to stop the other dose as well but for now they are taking it one at a time.
Lastly we learned that Eli has an Alpha 1-antitrypsin deficiency.  Eli has the milder form "M" and "S" and his levels are barely under normal range, but with his history it's something that his doctors want to keep an eye on.  Ultimately if his levels were to continue to drop it's something we could supplement thru his IV. 
Right now we are simply trying to stabilize with all of the new changes, as well as simply getting over this sickness that so many of us have. 

Mitochondrial Disease Awareness Week is right around the corner and we are gearing up for it as well!  Our local mito walk is on the 15th and we are so excited to see everyone again this year!  Our oldest 2 kids have been fundraising away and have raised almost $200 on their own!  We are so very proud of them!!!  Eli's Journey Energy for Life Team  This link will take you to Eli's team page where you can join our team as an in person walker, a virtual walker, and/or make a donation to Eli's team!!


For Mito week I'm going to answer the question we are asked the most.  How do we do it, how do we find enough time in the day.  We are going to walk you thru a week in the life of our Mito family.  We will record our days and nights, and of course will take fun pictures to go along with it all. 

More updates soon!

Super fast update

This will be a quick update as I don't have a whole lot of time.
Eli's lovenox levels came back off still so we are adjusting the dose and will redraw at 2am wednesday morning.  Also we are still working thru feeds, fluids,IV pumps and supplies and hickman supplies and lovenox and all of those things ordered.
Lastly we met with his GI doc today.  He spent some time going over the biopsy findings.  They showed blood cells and immune cells all thru the intestines full of iron.  He has no idea what's going on but they are pretty sure they know what's causing it.  He ordered 2 full pages of lab tests and we drew those today (from the hickman...so awesome) and then he will be scheduling Eli for a liver biopsy.
Everything is pointing to the liver.  Multiple docs over the last few months have suspected liver problems, some labs have also pointed to it.  So now they are seriously ready to investigate the liver.  We are nervous.  This is one body part we don't know much about we just know you need it.
We will update more as we know more.

Out of Surgery and in PICU

Eli got to the hospital Wednesday morning at 8:30.  He had his ECHO and we met with the surgeon to go over his plan.  We got to the floor around 10.  We were never able to get an IV.  So many attempts and so many bruises.  We got 1 IV in and started fluids and lost it 12 minutes later.  So anesthesia came and adjusted everything and we were able to keep fluids running thru the J until right before surgery to keep his sugars stable.  He went down to pre-op around 6:30 thursday morning.
Anesthesia and the surgeon spent quite a bit of time going over procedures and precautions.  Some things had to be adjusted since Eli was going into the OR without access.  They ended up giving him some versed thru this J tube and that really calmed him down.  They were finally able to get an IV in his head right between his eyes in the OR and were able to get surgery started.  They both came out and talked to me saying that his veins are shot and very thin.  They would be right inside the vein with no return of blood and the moment they tried to push they kept blowing.  They aren't sure why this is happening.  They were able to get a Hickman placed.  It's in his upper clavical and chest right over his heart.  The surgeon was happy with the placement and we were able to use it within 2hrs of surgery.  We have had no issues giving fluids and drawing labs.  They admitted Eli to PICU after surgery and that's where we still are.  His HR struggled a bit late yesterday evening and the doc ordered an EKG.  All looked good.  He stabilized.  Lovenox was started last night and no bleeding so far with that. 
Currently he is back on his elecare feeds thru the J tube and we are pushing all fluids thru the hickman.  This morning the team is coming with the pharmacist and the dietician to work on getting meds switched over to IV as well as a permanent fluid and feed schedule. 
We are hoping that he will be able to go back out onto the floor today.  They are also hoping to run some more metabolic testing today as his protein levels are still low and more nails are falling off.
Lastly we got some of the initial biopsy results back late yesterday afternoon.  They are another set of findings that the doc doesn't quite understand.  They showed hemosiderin containing macrophages in every level of the colon.  Basically this means that the hemoglobin (blood) is eating basically blood.  White blood cells are eating red blood cells.  They aren't sure why this is happening.  There are some explanations but they are still trying to figure out what this means for Eli and what we need to do next.  His GI doc is meeting with the pathologist on Monday to look over the slides and chat some more about it all.
We will be inpatient until atleast monday as we have to get to a therapeutic dose of lovenox as well as getting all of his fluids situated and obviously ordering all of his supplies and such to go home.  They team is already working with his case manager, DME's, pharmacies, and nursing agency to get the home stuff taken care of. 
We are exhausted as always but everyone is very hopeful that we are on the right track.  I will update more later tonight after we meet with the teams today and have more info!

Here is Mr Eli waiting for his ECHO.

Here is Eli in Pre-Op hanging out with his baby.

Eli and his baby after surgery in the recovery room.  Notice that baby came out of the OR with her own hickman.

Eli and his baby both showing off their new hickman lines!

It's Time

It's time for access.  Eli was admitted this last week.  It took us 8 hrs to get an IV in and we ended up having to give up on labs because we couldn't get any blood.  We were finally able to get him on some IV fluids and start his cleanout.  He did really well with his blood sugars.  Now that we know about his adrenal insufficiency and have very strict protocols in place and his meds we are much better equiped to deal with his sugars.  He had his EGD and colonoscopy the next day.  Hi GI said that his large intestines looked "weird".  There was discolored spots all over and he is unsure why.  He took alot of biopsies so we will get those results in a week.  He again agrees that Eli seems to be having an absorption issue.  His protein was again low and his nails are now beginning to fall off.  Between the labs and exams and tests and all of these things it's been decided to move forward with access.  Eli went from his procedures to ultrasound.  They checked all over to make sure he didn't have any clots.He will be admitted to the hospital on Wednesday and will be having a Broviac central line placed on Thursday.  We will be switching meds and fluids over to the central line and hoping to keep his nutrition running thru his J tube.  Currently the goal is to avoid TPN as we know he's had some struggles with his liver.
He also met with his orthopedic surgeon this week and got his cast off.  She was able to see where the foot was fractured but says it looks like it has healed nicely.  He's doing well adjusting to life without the cast.  We also met with his eye doc this week and he is going to work on getting a good fit on Eli's glasses.  This is something that we are really struggling with right now.  So I'm glad that he's taking that project over.

Emily ~ She's good.  She's been gone alot.  She has been spending alot of time with 2 friends that live close to here.  She's still busy with her violin and has lessons once a week, as well as daily practice.  She starts the 6th grade tomorrow, her last year in elementary school.  She got the teacher that she really wanted and is really excited about that.  Our elementary school closed this last year, so all 250 kids from our neighborhood school are combining with the school in the neighborhood next to ours.  Emily's age group gets the new wing of the school that was just built this summer, so they are all excited about that!  She will be in class with alot of kids from our old school, and alot of kids from the new school.  She's excited.

Jace ~ He just celebrated his 9th birthday on the 6th!  Getting so old!  We had a small celebration that day and then my parents came in town this weekend and we went to the Money Museum, to Steamboat Arabia, and out to dinner at 54th Street Bar and Grill.  He had a great time and got all of the presents that he wanted!  He got ninjago's with a book, remote controlled beyblade, the new diary of a wimpy kid book, a giraffe pillow pet, skates, socks, and some money!  He will be starting the 4th grade this year and also got the teacher that he was hoping for!

Benjamin ~ He's been busy swimming.  He is 100% a little fish.  He loves it.  He's been going to the outdoor pool this last week and jumps right off the diving board into the 12ft deep water and swims no problem.  I'm amazed at how much he's learned on his own.  He will be starting the 2nd grade this year and will be with a new teacher.  He is happy though because he will be with his best friend who just lives a few streets over from us. 

Ariana ~ She's been busy with her neighbor friends and playing with her new polly pocket that she bought with her chores money.  She spends alot of time with Eli and I going to appts and such.  She is going to be starting kindergarten on Wednesday.  She is excited to get to go to school full time.  She enjoyed her first year of school shopping and is all packed and ready to go! 

We had a garage sale 2 weeks ago and my kids again sold "Muffins for Mito" as well as keychains.  They ended up making $122 that day and have since made another $10.  We will be getting pics of their keychains up and continue to sell.  ALL proceeds go to our team for the Energy for Life Mito walk here in KC on September 15th.  We are excited to get to go again this year and see everyone.  We were also so proud of the kids and all their amazing work.

This next week will be a busy one.  Early this week I have to interview nurses.  We sadly lose one of our nurses because with the central line we are now only allowed to have RN's and one of our nurses is an LPN.  I also have a few appts, the beginning of school, and Eli's hospital stay will be here before we know it.

We are scared.....really terrified.  This is what Eli almost died from in January of 2011 (sorry typo. Accidentally typed 2010 but it was January 2011.  Gotta love typing quickly).  It scares the heck out of me to be at this point, to have no choice.  We 100% stand by this and think it's the best choice but sadly that doesn't take the fears away.  We are so happy with Eli's team and trust them with our sons life.  I'm just not ready to hand him back over to the anesthesiologist and surgeons again this soon, not that I'm ever ready.  We will update as we can.

Fears and Quality

We are potentially facing one of our biggest GI/feeding fears.  Eli's body is struggling.  We are using the J tube to much and his body isn't handling it.  We had hints that this might be starting a few months ago and it's getting considerably worse.  He is flinching when we push meds and fluids, and having alot of diarrhea, especially after larger doses of meds/flushes/feeds.  We obviously have no choice but to use the J tube (which feeds right into his intestines), as his stomach doesn't work and hasn't since November of 2010.  Eli is having so much diarrhea that he is struggling to pee as much as needed, as well as a massive skin breakdown.  He is screaming when he has a movement and everytime we need to clean him.  The doctors are concerned.  His GI has decided that we need to move forward with an Upper and Lower Endoscopy.  Eli will be admitted next Tuesday and will have the procedures on Wednesday.  His complex doctor and I spent all day emailing back and forth yesterday and he is on our side.  He agrees that this is a major quality of life issue.  He believes we will need to accept the risks associated with a central line to allow for quality of life and pain reduction, as it's causing Eli alot of pain.  We are back to giving tylenol frequently and have greatly increased skin care and creams again.
As much as the risk of a line scare me, hearing my son wake up in the middle of the night screaming in pain scares me too.
We are also continuing to have issues with temp control, and haven't seen anything under a 100 lately.  Between the temps and the hydrations issues he's been pretty fatigued as well.
We will update more as we know more.

End of the Week

Eli had a fairly quiet week appt wise.  We had PT, OT and sign this week in home.  He got his new glasses (which didn't fit and we have had to reorder).  He also got his new ear molds in for his hearing aids.  Today we meet with his dermatologist to follow up on everything going on with his skin.  The meds worked on the tinea and it is completely cleared up.  His HFM is looking better although his toes on his left foot are really struggling and the doc gave some suggestions.  The biggest issue is the rash on Eli's face.  We've been battling it for almost a year now and nothing is helping.  It's spreading onto his jaw line as well onto the bridge of his nose.  The left cheek is horrible.  The doc is no longer sure what it is or what to do about it.  He has prescribed a stronger med and if no changes in 2 weeks then he's sending Eli to the plastic surgeon for some biopsies that will have to be done under anesthesia.  We are hoping it doesn't come to that. 

Here is the main one on the left cheek.

Here are all 5 of my kiddos a few days ago looking super cute!

The olders are all pretty good.  We have stayed pretty busy this week.  Emily has been working hard on her violin.  Jace has enjoyed these slightly cooler days and has been outside alot with his friends.  Ben has been out and about some with his respite worker.  He met with his primary med doc today and she has decided to put him back on his primary med.  The school hated it because he stims more on it they claim but his OCD and anxiety is so much better on it.  His doc is ordering a strong sensory diet while in school to help.  Ari has been pretty good.  Talking up a storm like always.  This last week she has taken to calling Bob "Daddy" and it melts his heart.  She bats her little eyes and says it and he loves it!  She's all about him, always has been. 

I've been working out every morning.  I've started going to the gym at 6am to be able to get my workout in.  It's not been as rough as I expected and I've still been able to get my 3 miles in with my run/walks and I even got my leg workout in this morning!

That's about all for now.  I will update more soon.  We are in the final drive of the summer.  Jace's 9th birthday is in 2 weeks and school starts in 3 weeks!  It gets to be a busy time around here!

Oh I almost forgot.  The final addition to our family (for now according to my children)
Eli's puppy, Ophelia, joined us yesterday.  Eli and Ophelia picked each other out a few weeks ago and she was finally able to come home yesterday.  She is a great pyrenees.  They will go thru training together for Ophelia to be trained to be Eli's helper.  They both stay close together all ready and love each other so very much!

Eli giving Ophelia kisses and love

Ophelia on her car ride home.

Quick Early Week check In

It's been a fairly quiet few days, which is incredibly unusual.
Eli's neuro appt went well.  He's happy with the advancements Eli has made with walking and with signing.  His last EEG didn't show any seizure activity, but did still show "overall reduced background waves".  Which we already knew. 
We went out of town on Saturday and had a great time seeing friends that we haven't seen for awhile.  It's always nice to reconnect with people and feel at home!  Sunday was church and we spent some time getting some basics done around the house.
This morning was back to the gym and we got 3 miles in this morning.  We again ran every other lap and the kids did great with it.  Then it was off to Emily's violin lessons.
The rest of the day was spent relaxing.  I actually got to watch 2 whole TV shows today.  I'm not even close to caught up but it was nice to get to lay low for an afternoon.  I even got some housework done and a bit of rearrainging of furniture.  Tonight was some super yummy pumkin waffles with apple cider syrup.  Always a popular meal! 
The rest of the week is fairly light appointment wise.  Eli has therapy, we have a meeting with the nursing agency, Ben has a med recheck, Eli has the glasses fitting and the audiologist, and we have our movie of the week and an exotic animal event at the library.  Not counting our 4 days of running at the gym.  I know to most that doesn't sound very light, but for us it is!  :)
I will update on Wednesday after our exotic animals event with some pictures!

A Few Pics

Below are a few pictures from this evening.  At the end is a link to pictures from our vacation to Wichita.

Ariana hanging out in Eli's playroom enjoying some Ipad time while he's off playing.

Eli in his favorite chair watching a signing times movie.

My oldest 3 hanging out in the living room all playing their kindles.  They weren't thrilled that I made them stop long enough to smile.  lol.

Tebow exhausted from a busy day but atleast somewhat willing to look at the camera.

Tibby worn out from her busy day as well.

On the left is Stripes and on the right is Speckles.

July 2012 Photo Album

Updates

What a few weeks it's been. I will work backwards from how I normally update!  :)

Emily ~ She's doing pretty good.  She's busy with violin.  She has lessons each week and she practices daily.  You can really hear the improvements when she plays and her teacher has commented on them as well.  She is still going to counseling and had an evaluation yesterday.  They are going to begin some basic testing as well as started her on a small dose of a med to see if that helps a touch.  She has been getting together with a friend in the neighborhood often lately and has had alot of fun getting to know her.  She is looking forward to starting 6th grade soon and continuing her time in strings.

Jace ~ He has been on his new meds for about 2 weeks now.  They have made him incredibly tired during the day and he's struggling to sleep some during the night.  He's had 1 upset stomach day, but so far doesn't seem as though he's had alot of GI changes.  He's definitely been calmer and hasn't had as many extreme moods, or violent behaviors.  He's been inside alot over these last few weeks as his body adjusts.  He's still been out some playing with friends and is still enjoying his electronics and such.

Benjamin ~ He's a month into his new meds and the doc is leaving him on this dose until we meet with her next week to figure out if there are any changes she wants to make.  It's helped a bit, but he's still struggling with some issues.  He's enjoying spending time with his new respite worker and they've been out exploring some new activities in the area.  He's also continued swimming alot, as he says he's a fish and it's his favorite thing to do.  He's also been learning how to make paper airplanes and has really enjoyed that as well.

Ariana ~ She's been busy playing with her neighbor friends and learning to ride her bike.  She's doing well with the training wheels and can get back and forth on our street.  She's super excited for the start of kindergarten and asks every day when it's time for school.  We are considering cutting her hair a little bit before school, but she's not so sure.  Currently her hair is at her lower back, close to her waistband on her pants. 

Elias ~ He's like alwasy my incredibly busy man.  We got past surgery recovery and he finally leveled out on his weight.  We left on July 5th to head to Wichita for vacation.  It was me, the 5 kids, and Eli's nurse.  We had been there for 15 minutes when my dad came home from work.  The kids and I were all standing at the garage door and Eli was waving to grandpa.  Between his balance issues and his problems with seeing he lost balance and stepped right out of the house and fell down the concrete garage step.  He wouldn't stand on his leg so we finally made the choice to go into the local ER there.  He wasn't crying and they stated that kids cry if they break something.  So they took an xray of his foot while he was in his wheelchair and sent us home.  The next day he still refused to toe touch and was in pain if we touched his foot or leg.  I called his old pediatrician and she got us right in.  They xrayed his leg from hip to toe.  Sure enough his tibia was broken.  They casted him there and told us to see his orthopedic surgeon the next week.  By Saturday Eli had a high fever and napped for over 4 hrs.  We ended up coming home early.  We met with his medically complex doc on Monday and discussed quality of life.  Eli's struggling to keep his body temp and hydration under control.  The more fluids the more his GI system is struggling, which makes him even more dehydrated.  We discussed moving forward with placing permanent access.  His doc is talking with his cardiologist and hematologist for permission to move forward with this process.  He scheduled us with Eli's orthopedic surgeon for that Wednesday.  On Tuesday Eli woke up covered in blisters and rash and his cast leg was so swollen that his toe was gray.  Called the orthopedic clinic and they had us come right in.  They cut the cast and placed a walking boot.  The PA thought it was a staph infection so she sent us to the ER.  The ER said it was Hand, Foot and mouth disease and sent us home.  We met with the orthopedic surgeon the next day.  She said that not only did Eli fracture his tibia but also his foot.  She left him in the walking cast until the blisters went away.  He will re-check in with her on the 10th of august.  So since then he did get his cast put back on.  It's a waterproof cast that allows him to swim and bathe.  He is able to weight bear now and is slowly walking thru the house.  The rash is almost all gone.  We are still waiting for everyone's decisions on the access for Eli.  He also got fitted for his new glasses and they will be in next week.  We met with the audiologist this week as well and they fit him for new ear molds.  We may need to make some hearing aid changes as well depending on how it goes.  Today we meet with the neurologist.  I'm always a bit leary about this appointment.  We will see how it goes.

General ~ Our household has again grown.  Tebow now has a playmate.  Her name is Tibby.  She's a purebred mini aussie, just like Tebow.  She's only 9 months old, so a bit younger.  We also got a bird.  He's a zebra finch, the kids named him Hopkins.  Lastly Mr Eli will be getting his puppy in 3 1/2 more weeks.  She is currently only 4 1/2 wks old.  Her name will be Ophelia and she is a great pyrenees.  She will go thru training with Eli to be his "helper puppy".  Ophelia and Eli picked each other out!  Our household is busy and the kids are loving having their animals.  We don't regret it at all!

I will get more updates up soon.  This weekend we are going out of town but will update next week.

Sunday Check In

Eli did in fact continue to struggle with pee.  We ended up at the surgeons office first thing Monday morning with a sore, swollen boy.  He of course peed at the office.  He remained swollen and struggled to pee alot over the next two days but by wednesday it was back to normal...mostlly.
Now we are left struggling with the diarrhea, lack of pee, bordering on dehydration, temp control issues, and the heat rash is back in full force.  He is also really off balance and struggling to keep himself up and steady.  He has lost 1 1/2 lbs this week with all of his heat and hydration issues.  This isn't something that we can let go until the 9th when we meet with his medically complex doctor.  So I will be calling Monday so we can get a plan in place.  Bob and I have discussed our thoughts, and we know what our home nurses think, so we will just have to see what the doctors thoughts are.
Eli also met with the new eye doctor this last week.  She says that his lenses and glasses need changed and she also wants him patched for 4 hrs a day/7 days a week.  We will begin working on the new glasses this next week and then will begin patching.

The olders are good.  Busy as ever.  Emily has been working hard on her violin lessons and we are really hearing the improvements.  Her teacher was really happy.  Jace has been busy outside most of the time.  Benjamin has been busy with his respite worker, mostly swimming every day, although he has gone to the jumpy place, zoo, and arcade a few times.  Ariana has been playing with all of her new barbies as well as snagging the IPad every chance she gets. 

This next week Eli has an appt with the orthopedic surgeon.  We haven't seen her in 6 months and i'm looking forward to her thougths now that Eli is walking and that he has his new braces. 

I will update more soon.

Surgery and Recovery Overview

Monday morning we called up to CMH to get our surgery and admission orders.  Eli was admitted at 4pm Monday afternoon.  The goal was to get an IV running and get him switched over to fluids to be ready for a 7:30am surgery start time.  It took 9 hrs to get the IV.  We finally got access around 1:30am.  It wasn't for lack of trying.  We had multiple failed attempts, blown IV's, etc.  It was a mess.  They screwed up his formula orders and med orders as well, so it was all in all a disaster.  He did end up making it to surgery on time.  He was back for around 2 hrs.  They weren't able to do the surgery laprosopically, and ended up having ot cut him open.  He was pretty sore and groggy for the rest of the day.  He had alot of problems this time with nausea, and kept choking and retching and dry heaving to the point of turning purple.  It wasn't a fun recovery.  He came home on Wednesday afternoon with his cath.  By Thursday afternoon he had blood in his cath, by early evening it was bleeding ALOT.  Called surgery and they had me bring him in.  By the time we got there he was no longer peeing and it was just blood.  He passed a blood clot and then alot more blood and then it stopped.  They sent him home to lay low and rest.  Yesterday morning all looked good.  By yesterday afternoon there was blood again.  Called surgery and they decided to pull the cath.  So we did that yesterday evening.  He did pee last night, still blood in the urine.  One pee this morning so far.  We are hoping if he rests and lays low that the bleeding will stop today. 
His pain does well as long as he gets 4 doses of tylenol a day.  He's still really tired, which is to be expected.  Like always Eli is my fighter.  He has pulled thru this like a champ!
Our family on the other hand is exhausted.  Bob and I have hardly slept this week.  My headaches are thru the roof, and my blood pressure has been elevated.  Life is really catching up with my physically. 
I will get more updates up soon, but I wanted to get a basic surgery overview up.

Quick Eli updates

Pancreas labs are back and they all look good.  The biggest immediate concern is that that Eli is again constipated which is requiring another full clean out.  This for Eli can be torturous and we have to be careful to avoid diarrhea.  The problem being we just tried to stop the miralax as it was causing alot of diarrhea, but without it he's constipated.  We can't seem to get to a happy medium.  We are wondering if we are simply pushing to much into the intestines in a 24 hr time frame. 
We are going to lay low this week and hope to keep everything smooth as we have surgery coming up on Tuesday.  He will be admitted Monday and switched over to IV fluids and meds.  His geneticist has also sent over a detailed list of surgery precautions and anesthesia instructions as well as detailed instructions on what to do with his meds for his adrenal insufficiency.  Hopefully this will help keep his cortisol levels a bit more stable.  He is obviously at a greater risk for hypoglycemia and seizures with the anesthesia and the stress to the body from the surgery BUT hopefully we can help give his body some supports. 
At his PAT (preadmissions testing appt) they were detailed and organized. They know Eli so well at this point. The head of the anesthesia dept has been notified and will again be notified on Monday. He will be running everything on Tuesday.
I'm not ready for surgery.  I'm just not.  Not that I'm EVER really READY but I feel even less ready this time, nervous.  I'm not exactly sure why, I just am. 
As of right now it will just be me at the hospital during Eli's surgery.  We are hoping to figure something out for the kids but unsure yet.  Maybe that's why I'm more nervous than normal. 

Anyways.  The older 4 are busy this week with VBS, and next week Emily has strings camp each evening.  They are enjoying their summer and staying super busy.
I will update more soon.

More Info still not equaling answers

I got a call right before Bob and I headed out of town that a few more of his lab results were in, although we are still waiting on alot.
Eli's protein was low, although we aren't sure why.
His creatinine was really low.  She thought he only had 1 kidney and that it could explain some of that, but nope he still has both.  We do know that 1 doesn't work well BUT his creatinine has still always been quite a bit higher.
The biggest shocker was in his liver enzymes.  His AFT (normally is 7 to 40) Eli's was 255.  His ALT (normally 7 to 50) Eli's was 430.  They don't completely freak out until these numbers are 1000 that being said alot of the early symptoms we would be watching for with liver failure would be masked by Eli's other symptoms.  So they have us watching for yellowing of skin and eyes and copper colored urine.  They GI and geneticist are talking together along with Eli's medically complex doctor and trying to figure out what next and what's going on.
From a parents perspective we are concerned.  We've been told not to freak out yet, and we aren't, but we have been told concern is fine.  That's concerning. 
So as of right now it looks like something is going on with Eli's intestines, pancreas, and liver but nobody knows what. 
We will update as we know more but obviously it's Friday so it will be early next week before we have any more information.

On a side note Bob and I got back this evening from our vacation.  It was amazing.  We were gone for 3 days and 2 nights.  The bed and breakfast was amazing, and we packed our time with tons of outings and museums and different foods.  We are so thankful to have had our time away and are so thankful to the amazing people in our life who helped this happen! 

What's simple?

Life can never be simple.

Emily ~ She finished out the school year strong, with all A's and did incredibly well on her state assessments!  She's doing ok so far this summer.  She's taking violin lessons this summer.  She goes once a week and is enjoying it.  It is something that she is really good at and really enjoys and we are hoping that by getting her involved in private lessons, it will help her excel even more!  During her extra time she's been doing some reading, craft projects, and making some new friends in the neighborhood.

Jace ~ He finished out the school year well and did AMAZING on his state assessments!  We are so glad that the changes were made on his IEP to allow him to do that testing verbally.  The differences really showed!  He has been busy as always outside with his friends.  This last Saturday he ended up in the emergency room.  He is doing better slowly but surely now but still a bit sore.  He's on 3 new meds to help cure it all.  He's getting all of his boy activities back so he's definitely doing better.

Benjamin ~ He finished out the school year pretty well.  He's having a rough summer, as we've weaned off one med and will soon be starting the next.  His respite worker is here each day and tries to keep Ben as busy as possible.  They have been to the Zoo, Monkey Bizness, pool, parks and the movies.  He will be turning 7 on Thursday and is looking forward to his party this coming Saturday.  This last weekend my parents came in town and we all went to the new Sea Life aquarium here in KC and the kids loved it! 

Ariana ~ She finished out the school year strong and had alot of fun at her pre-k graduation!  She's doing pretty good so far this summer.  She plays outside with her friends alot and really enjoys that.  She went to a garage sale last week and got a bag full of barbies and that has kept her busy for days! 

Elias ~ Oh my little Eli.  Life is a mixed bag for him.  On the positives his walking is doing great!  He is all over the house and can now stand himself back up from a sitting position.  He can get up and down the 1 step by himself and that allows him more freedom.  He's still not able to carry his feeding pump as it just throws off his center of gravity to much.  The negative is all the walking and the summer coming on is causing alot of havoc with his temp regulation, which in turn causes hydration issues.  He's still having alot of intestinal issues (diarrhea) which obviously makes the hydration even worse.  His temps have ranged from high 99's all the way to 103.  We are already pushing sooo much fluids.  His GI doc chose to run some stool samples and we just met with him yesterday.  One of the tests came back showing high leukocytes, which is a problem.  Eli's belly is also very tympanic.   Upon further testing and checking and looking thru Eli's meds lists we realized there was a major issue.  First of all one of his tummy meds had to be stopped immediately.  It is listed as causing life threatening interactions with 3 of his new meds.  So we immediately DC'd that med.  He also feels like Eli's intestines are struggling.  He either has an infection in them, the bad bacteria is taking over the good bacteria, or they are simply overworked and overstressed.  So Eli is going to go on a new regimin of rotating antibiotics every 2 weeks.  Normally the doc would rotate 3 different antibiotics but Eli to small and young for the side effects of one of them.  So we will only be able to rotate 2 meds for now.  Also he is concerned that there is something that we are missing so has decided to do further testing.  He ran 5 tubes of blood, and did another stool sample.  He is concerned about Eli's pancreas and his intestines.  He is wonering if Eli has celiac disease as well, so he tested for that.  Eli is on a predigested, elemental formula BUT many of his meds contain gluten.  This will be a HUGE problem if he is, as some meds don't have good alternatives.  The next step after all these new labs come back is an EGD, colonscopy, and biopsies.  We are changing alot of things involving his constipation prevention care as well.   I'm nervous as we make our way thru all of these changes as Eli's GI system is VERY sensitive.  We have also constantly had the feeding concerns.  We started by mouth, then lost that.  Then we fed his stomach, then we lost that.  Now we feed his intestines.  If we lose that we have 1 option left, TPN.  And for Eli that's VERY dangerous.  With his blood clotting disorder and lowered immune system it's not a good/safe option.  We love his GI doc and do wholeheartedly trust him to come up with the best plan, but it's still scary.
The next issue we are currently dealing with head on is Eli's eyes.  They are struggling.  He is having trouble seeing down and to the sides.  So he doesn't realize when things are on the floor or even see low tables or such.  Last night he missed the fact that his 5 year old sister was on the floor and fell over her.  He runs into tables at the docs office, and cuts corners short all the time.  We are constantly running in front of him to move things out of the way so he doesn't fall.  We have already put red duct tape over all the uneven surfaces to help him better see them approaching, but since looking down is a struggle it doesn't always help.  He did get his new lens put into his glasses but they don't help with the looking down or to the sides.  We are hoping to get some better plans in place to help him be more independent with moving around. 
We are waiting on his new leg braces and hoping they will be in soon.  His new ear molds are in, so he's back in his hearing aids full time as well now. 
He is on 3 new meds from his dermatologist.   His charcoal cultures of his head and eye came back showing something basically like ringworm.  So he has to go on antibiotics for 8 weeks, and these can have some not so great side affects, like hearing loss.  The other 2 new meds are creams.  It seems to be slowly working and he doesn't seem to be as uncomfortable anymore.
Lastly he was transitioned into a pediatric hospital bed.  We needed to be able to keep him safe and we aren't able to do that any more in a crib.  We were able to put his speciality mattress in the hospital bed and my dad and Bob had to make some adjustments to make sure he's safe but it works.  I HATE it.  It is one more medical item in his room.  I loved the wood crib.  It looked so "normal."  Not that we really know what normal is.  Heck yesterday at the GI doc I got all excited because she restocked my sterile containers and biohazard bags.  My supply was getting really low (just had a few U-bags left). 
As of right now Eli has surgery coming up on the 19th of June.  This will be the last surgery for his testicles as well as the final hernia repair.  The last one was a rough recovery so we are hoping now that he's a bit bigger and stronger he will get thru it easier.  Time will tell. 

Bob and I are ok.  We are exhausted.  Life with Eli alone is exhausting, and then add on the other 4 kids and some days it's near unbearable.  I have my random times where I just start crying and there isn't a damn thing I can do about it.  Bob and I are leaving town tomorrow morning.  We will be gone for 3 days and 2 nights.  We are going about 40 miles away to a bed and breakfast.  It will be our first time going away even for an evening since Eli was born.  We NEED this time.  As much as we will miss the kids, we are beyond excited. 

I will get more updates up soon, hopefully.

Behind on Updates....again

I don't mean to keep getting behind on updates but so much is happening and it is taking everything to just keep getting thru it all, so getting on here to update sometimes just feels like to much.
Eli is not "doing as expected or understood".  This seems to be pretty damn typical.  We met with the dermatologist last week.  He is covered in multiple types of rashes, lesions, cysts, and skin breakdowns from head to toe.  It's on his scalp, eyes, nose, in his ears, over his face, down his chest, shoulders and back, his diaper area, palms of his hands, his legs and feet, basically everywhere.  He has been followed by a derm for months because of all of his skin conditions but this is way past what we have ever seen and non of the meds were working anymore.  The derm is stumped.  He swapped out all of Eli's derm meds and added 4 new ones.  He is wondering if it is a reaction to all of eli's medications (which at this point are around 25 different meds).  He did scrapings and sent them in for cultures.  He is going to work with Eli's doctor to figure out what is happening and what we can safely do about it.
Then last week we meet with Eli's PT and the bracing dept at CMH.  We are changing Eli's AFO's again.  He has outgrown his old AFO's and he is still not able to use the SMO's.  They simply don't give him enough support.  We were really hoping to be able to step down to the lower bracing but it's not happening.  We are changing up his AFO's a bit to give him a bit of a spring and some extra movement.  If he doesn't do well with that we will have to go back to a full AFO.
Then we met with Eli's eye doctor.  It was again not good news, although we were expecting that.  We had noticed changes at home.  Eli was cutting corners, running into the edges of walls and furniture, refusing to look at things close up, and back to looking over his glasses again.  His script has again changed, and because of this newest change his right eye has again stopped working entirely.  He ordered new lenses and wants to get Eli re-used to them and then we will most likely have to go back to patching again.  The lens for the right side is now so thick it doesn't fit all the way in the frame of his glasses anymore.  He is going to continue following Eli closely and we have also chosen to get a 2nd opinion to make sure there isn't something we need to be doing differently.  The vision specialist came out to our home and is working with us on activities to teach Eli tracking and to make uneven surfaces safer for him.  We have run red tape over the floors at all of the steps and such to see if that helps him notice them.
Eli's feeding tube broke AGAIN.  For the 5th time this year (each tube should last 3+ months).  The silicone was literally eaten away and corroded.  We went in and it was worse than realized.  Again the balloon was full of bile and stomach contents and the tube was corroded.  They have never seen this happen.  They have sent his tube into the company for testing.  Nobody knows if it is because of all of the medication we are putting thru the tube, or because of the bad placement in his stomach causing alot of extra acids, or both.  This brought everyone around full circle to a conversation about his stoma placement.  Eli got it when he was 2 months old and SOOOO tiny.  It is now at the very bottom of his stomach right outside his intestines.  This causes some issues, especially with venting and draining.  His GI looked thru his past scans and xrays and they have decided that Eli needs to have a consult with the leading GI surgeon in our area.  We will be meeting with him on the 5th of June.  I'm terrified to even consider doing that surgery all over again.  It was Eli's toughest surgery by far, to date.  During the same conversation his GI doc has decided to again make changes to his miralax and also run a ton of tests.  Eli is still having constant diarrhea and he is concerned about bleeding and ulcers in the small intestines, or possibly a bacteria or parasite.
Eli has also been struggling again with temp control issues and has ranged all the way up to 103, and is hanging out around 100.  He has had some episodes of elevated respirations (up to 49) as well as some high heartrates.  We are really having to stay on top of his fluids to try and keep him well hydrated so that doesn't all get out of control.
Lastly Eli met with his audiologist.  He was fitted for new hearing aid molds and his aides were again adjusted.  He is still struggling with the high tones and is still not hearing them, even with his aides on.  He showed well in low tones with the aids so that is encouraging.
We have alot coming up in the next few weeks with Eli.  He meets with the cardiologist this next week, his braces will be in soon, we will be meeting with the urologist, his complex doc, his GI doc, surgeon, and geneticist.  We will hopefully be getting all of his test results back in as well.  He is currently scheduled for surgery on the 19th of June, and we will see what the GI surgeon wants to do on his end as well.

The oldest 4 are busy winding down school.  Emily, Jace, and Ben finish up on  Monday and Ari finishes up on Tuesday.  I will get full updates on them up next week after we get finally grades and reports and awards and such in!

Bob and I are here.  Like I said the goal is just to get thru each day.  It's a constant balancing act, refiguring Eli's needs minute by minute.  I'm exhausted and feeling on the brink of tears or screaming often.  I feel like there is always a slight knot in my chest, always wondering what next.  We have ended up shutting so many people in the community temporarily out, because I feel like I have nothing to give.  so many days I'm at a loss for encouraging words, because I'm right there in the trenches just like they are.  Experiencing our own pain and agony, and attempting to make our way thru our own journey.  I feel so selfish for not being there for everyone right now, but PLEASE know that you guys are in all our thoughts and we are sending hugs and thoughts and reading updates as often as possible.

More soon.  Promise.

Slower Week

Last week was a bit slower of a week, which I'm totally ok with!

Emily, Jace & Ben are on their end stretch of school.  They have 9 1/2 days left.  They have finished up with choir, strings, book clubs, and even homework ends this week.  They have alot of field trips, spirit assemblies, concerts, field day, and picnics with their new school and classmates.  All the big end of the year activities multiplied as their school closes this year and they get to know their new school and new classmates.  They are excited and all wound up!
Ariana has 10 1/2 days of school left.  She has already been to her kindergarten roundup and has already been able to see her new school as well.  She's sad to see school ending and will miss her classmates so very much!
Elias is the one with the big news!  He's walking!  On his own, without his walker!  29 months later he's doing it!  We are beyond excited!  He's still falling alot, and needs alot of help standing up and getting stable but he's doing it!  He will be getting fitted thursday for a new pair of AFO's now that he's up and walking.  He meets with his eye doctor today to discuss some of the concerns and changes with his eye sight.  He has the dermatologist and AFO fittings on Thursday and has his audiologist on Friday.  Makes for a busy few days.  He goes to his cardiologist next week and we will be meeting with his complex doc here soon.  We will also be talking with his geneticist and his GI doc about the continued stooling issues, as well as the hydration issues.  Fun busy times.
Bob and I are same as always.  Keeping up with the kids, the house, feeding everyone, and all those other fun things!  We have found a once a month cooking vegetarian menu and are going to be trying some recipes out this month.  Hopefully that will relieve some of the daily work of not having to cook quite so much each day!  We are hoping it's successful!
I will get pics and videos up soon!

Heck of an ending to the week

The week was decently slow.  We had all the typical school stuff and all of that.  There were field trips and class assignments and spelling tests and reading homework, and all of those fun things.  We stayed busy.
 
Bob and I stayed busy as well.  We are now at 77.2 logged miles in 33 days!  I also started running some this week.  I'm still at small runs rotating with walking but I'm doing it!  I'm so excited about working towards my running goals.

The week ended with a BANG though.  Friday afternoon we had storms rolling in.  Jace was upset because he wasn't able to go outside and played.  So he laid belly down on the entry floor between the front door and the stairs.  I took the huge laundry hamper upstairs to hang clothes.  It caught a picture hanging on the wall at the top of the stairs, knocking the metal picture frame down.  It hit Jace in the back of the head at the bottom of the stairs.  It scratched his head and we were able to easily get the bleeding to stop.  He was doing well, eyes equal and reactive.  He stood up and next thing we knew he passed out hitting his head on the entry table, and had a seizure on the ground.  His eyes were full dilated and he was completely unresponsive and choking.  We of course called 911 and within minutes we had police, fire, and EMS.  Jace was transported by ambulance to the downtown Children's hospital.  He was very dizzy and very nauseous.  He was given meds to help with the throwing up, and he had a CT as well.  There was no bleeding in the brain.  He was sent home with a severe concussion.  He slept 13 hrs last night.  This morning he was still pretty out of it, but as the day has gone on he's done better.  He definitely gave us quite the scare.  All of the pictures have now been removed from the wall over the stairs, and we will never do that again.  I never imagined something like that could happen.

Eli has done decent this week.  He's had some struggles with body temp and has had to be watched fairly closely and kept inside alot.  He's now signing 21 signs and has even put 2 signs together!  We are so proud of how much he's accomplishing!

The kids have 15 school days left!  I can't believe another year is wrapping up!  Next year will be the only year ever that our oldest 4 will all be at the same school!  We'll have a kindergartner, a 2nd grader, a 4th grader, and a 6th grader!  WOW.

More updates soon.

Busy Week

It was a busy week like always.

Emily did end up going back to school and she did well with no problems.  She left this past Wednesday for camp.  Her whole 5th grade class went.  They were gone until Friday afternoon and she had a blast!  She's pretty tired now and glad it's the weekend to get caught back up on sleep.

Jace has had a pretty quiet week.  Not much has gone on for him outside of normal school activities.  Today he meets with his new ADHD doc and we are excited to hear what she has to say.

Benjamin had a field trip this week with his class and really enjoyed it.  He also went on a field trip to the firestation with his respite worker.  He got to get on the trucks, sound the horns, put on a big fireman's coat and even got to use a fire hose!  He had alot of fun!  He also meets with his new doc today!

Ariana has also had a pretty quiet week.  She had school as always.  She's made alot of friends in the neighborhood and spends alot of time outside playing with all of her new friends and working on riding her bike!

Eli has been a busy little boy.  He is working harder on harder on using his walker.  He can get around the main level decently.  He is also working hard on his signing and is now able to sign 19 words on his own without prompting!  We are so proud of him!  He can now climb up on the couch and he can apparently climb out of his crib.  We will now begin the process to get him a sleep safe bed approved thru insurance.  He also had his EEG last week.  We got the results back late last night.  The neurologist on call actually called me and explained all of the results.  He did not have any seizures or fragments which is a good thing. That means that atleast during the EEG the meds were doing what they are supposed to.  He did however have flowing, which is when the electrical activity in the brain doesn't flow as quickly as it should.  This is something that we had seen on the last EEG so wasn't a big surprise.  Eli also went in yesterday for another KUB (stomach xray).  He is completely cleaned out finally so we are going to end up needing to back down on his miralax dose some as he's still shedding alot of his intestinal lining.

Bob and I are busy as always.  We have been working out and/or walking every day.  We are at 26 days and 62.7 miles!  We have also gone to the pool multiple times!  Today is my birthday so we are headed out for a special birthday date night!  I'm super excited to get to eat at my favorite restaurant!

More updates and pictures soon!

Thursday updates

Elis EEG was this morning. He did really pretty well considering he was only able to sleep for 4 hrs. He cried a lot during hook up but fell asleep quickly. unfortunately we wont get results until next week.

Emily's appt was this afternoon. The doc did a whole neuro work up and said she is able to go back to school tomorrow but not to PE or recess yet. We will see how she does.

Today bob and I got in a 3 mile walk so I was so thankful for that.
More updates soon.

Quick updates

Emily is resting mostly. She has been complaining of being bored and not wanting to stay in a dark room so there has been some fighting there. She says that her head is still hurting, but her finger and leg are feeling better. She meets with her doctor tomorrow to see how she is doing and to check in.

Tomorrow is Eli's next EEG. He has to stay up until midnight tonight and then be up at 4am. We check into cmh at 7:30am. Then on Friday we meet with the audiologist and we will redo his hearing aids to give them another try.

Bob and I are doing well. We are on day 16 of working out every single day. We have logged 45.2 miles and are enjoying seeing our speeds increase.

More updates in the next few days as we get test results and such back in.

Bike Crash

Yesterday early evening Emily and Jace were riding their bikes while we cooked dinner.  Jace burst thru the garage door yelling that he needed help and that there was a problem.  Apparently they had been riding in the huge drainage ditch with no helmets.  Emily hit a rock and crashed, landing on her head and her left hip/leg.  Jace said she passed out.  He tried to get her up and she passed out again hitting her head. The third time he got her up and drug her up to the top by the street and then rode his bike home fast for help.  Bob flew down there and I brought the van.  She couldn't walk and didn't remember anything.  She had also busted open the finger nail and top of one finger.  Her and I headed straight to CMH ER.  No broken bones but a badly bruised tailbone, hip and femur.  She still can't walk or lay on her back or left side.  She has a bad concussion though.  She isn't allowed to be in light, do any physical activity, watch TV, play videos games, read books, or do ANYTHING that activates her brain to work much.  She has to do this until the headaches are completely gone for a full 2 days.  The doctor said to expect a week plus for recovery.  She is situated sideways in the recliner sleeping and Bob has checked on her often.  The doctors have her on tylenol which isn't working as well, but they don't want her taking ibuprofen because of the brain injury.
I'm so proud of Jace for how strong he was and how level headed he was during all of this.  He remained really calm and did exactly what he should have!
We will be having LONG talks about helmets and where it is and isn't safe to ride bikes.
I will update more when I can!

Easter 2012

I don't have time at the moment for a big post BUT I wanted to get the promised pics up!  :)
Last night we went out for my birthday dinner to Cheesecake Factory.  There were all 10 of us and everyone did really well!
This morning we all went to church for service and the easter egg hunt.  Here are some pics of the kids and the family!

April Already

Wow.  Like always time is flying.  We've been so darned busy there has been hardly any time to get on the computer.  I've been very behind with blogging, Facebook, and pinterest....and honestly I'm as happy as could be.

Emily ~ She's doing pretty good.  Her grades are great, again making principals honor roll with all A's.  She's staying busy with choir and violin and still really enjoying both.  She's been working hard on making some friends and has enjoyed playing outside and riding her bike lately, or walking Tebow.  She's been reading alot as well and seems to be rekindling her love of books.  We are hoping that she continues this much better mood and finishes out the year strong.

Jace ~ He's ok.  His meds had an issue on refill and we definitely saw a huge shift in his behavior and moods.  Hoping it all levels quickly.  He's doing decent with school.  He's working hard on his handwriting and slowing down a bit on his work so it's readable and correct.  He is finishing up all of his state assessment as well.  this was his first year to do them out loud with his speech therapist and it really seems to have helped.  We are looking forward to getting the results.  He got a brand new trickster stunt bike and has spent every waking moment outside with the neighborhood kids riding his bike.  He loves it!  He's already getting his dark tan and stronger freckles that will last all summer.

Benjamin ~ Ben is really changing lately.  He's had alot of changes at school and they seem to be helping.  They are having him do alot of sensory activities, including heavy work.  He's sitting on a special cushion, pushes the teacher around in her chair, walks thru the hallway, carries a heavy tote full of books, does jumping jacks, wraps up in a pillow, and they are looking into him using a weighted vest or a lap pad.  His teacher said they really seem to help and she's even been able to use some as a reward if he gets his work done.  At home he's done really well with Brian, his respite worker.  They get homework done and then head outdoors.  Ben is loving riding his bike and enjoys going all over the neighborhood.  They also explore the "secret" walking paths and the creek that runs thru our neighborhood.  Ben also had 2 separate play dates this past weekend with 2 friends from his class.  Academically he is still doing really well.

Ariana ~ She's doing well academically and socially.  Still alot of speech concerns and OT issues that we are working with the school to address.  She will get these services thru the school and potentially some extras from CMH, our local children's hospital.  Like always she loves school and has been making lots of friends.  She can now write her entire name as well as sign it without any prompting!  She got her first big girl bike a few weeks ago and is loving riding up and down our street.  She's hasn't tried her first walk yet, but she's not far.  She spends alot of time in the backyard playing with Tebow.  Her meds seem to be working well, and that really helps as she isn't having to run to the bathroom 20 times a day any more.  She meets back with her kidney doctor next month.

Elias ~ He's my little man.  He was doing really well.  After he was diagnosed with a severe adrenal insufficiency and started on all of his new meds it seemed like things had leveled well.  Next thing we knew though his sugars were dumping again and we were back to doing rescue boluses.  Then he became horribly constipated (2 movements in 2 1/2 wks).  He went into his new GI and they did xrays.  He was completely backed up.  The GI is concerned that between his gastric motility and the Mito that this is something we really need to get a handle on.  He has cancelled all surgeries and procedures until this is better under control.  He did a 3 day clean out, which of course resulted in some dehydration and sugar issues.  Now we are on 1/2 doses of miralax 2 times a day, plus dulcolax suppositories every 2 days if no movement.  He also spoke with Eli's geneticist and they discussed their concerns with Eli's sugars.  Apparently with the Mito and adrenal issues Eli's sugars will forever be on this roller coaster.  The geneticist says ultimately there is nothing we can do, but try and support him as best as we can.  Everyone is in agreement that there is no fixing it and our only goal is to try and stay in the stable point and keep Eli safe.  Like always not what we want to hear.  Eli ended up getting an eye infection, followed by his body's lovely response of a rash all over his arms and shoulders.  Now 3 days later he has bruises popping up all over his extremities.  His doctor and I have spent alot of time emailing and sending pics and orders back and forth.  We are hoping soon to get back to a stable point as we LOVE the Eli we get during those times.  He is becoming so animated and lively and we cherish those times.  He is working harder and harder to master his walker and can get around pretty well with it.  He's signing 15 words now, and can understand even more.  He's finally starting to do a crude pincher grasp and is so proud of himself when he plays peek-a-boo on his own!  He's learned how to go out the doggy door and loves "sneaking out" and playing on the back deck.  He can crawl up the stairs all by himself and is working hard on getting back down them.  So many advancements during our stable times!

The kids are at the end of the school year.  Ariana has kindergarten rounded later this week, and all of the kids are going to open house at their new school next year.  Next year will be our only year to have all 4 of our kids in the same school, as it's Emily's last year (6th grade) at the elementary school.  We will miss their school this year as it's in our neighborhood, only 2 blocks from our house.  Luckily their new school isn't far, but not walking distance anymore.  Our kids are a bit sad, but glad that their classmates are all going with them, as well as most of the teachers.  The schools have had alot of joint activities for the kids to all get to know each other, and a few more are coming up as well before the big merger.  We are curious to see who ends up buying the school here that is closing.  Our guess is a church.

Bob and I are doing well.  We've been busy as could be with the kids, and the house.  I've been working on some pinterest projects, I've read some books, gotten thru multiple knitting and sewing projects, gone to a fundraiser, been out with friends, been on numerous dates nights just the 2 of us, and a double date with some friends of ours, walks once maybe twice a day, some workouts, and even a 6 day vacation to Wichita over spring break.  We also headed to the zoo, a movie (The Lorax), and the Money Museum at the KC Federal Reserve.  We have been enjoying this mild weather outdoors where we can spend time as a family, all 7 of us!  In my free time I've also maintained all of Eli's medical files, organized all the kids papers from this school year, organized all of our household info and papers, done Ben's newest paperwork for his MR/DD waiver, met Eli's new case manager for the TA waiver, hired a 2nd nursing agency, interviewed for/hired/trained a new nurse, interviewed/hired/trained Ben's respite worker, been to 2 IEP meetings, 3 parent/teacher conferences, and who knows how many other things.  It's been busy but good and satisfying.

This coming weekend my parents are coming up for spring break and we will celebrate my birthday (April 21st) early with them.  We are going to go out as a family for dinner on Saturday evening, although I haven't picked where yet.  The kids are excited for church Sunday and the big Easter egg hunt between services with all of their friends.  We have officially decided to join our church (Unitarian Universalist Church) that we've been visiting for the last few months, and the kids are super excited about that as they love it there!

Other than that it's just same old same old.  I promise to try to get on more often and update.  My goal is to get back to 3 times a week.  No matter if I have time or not to get on here know that I'm always open to emails, texts, calls, or skype!  My goal this weekend is to get some good pics of the kiddos so I will get those posted by Monday!