Sunday, October 31, 2010

Halloween 2010

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

Saturday, October 30, 2010

Saturday Evening Update

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

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

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

Wednesday, October 27, 2010

Tons of Pictures from October

Full Daily Update!

Let me see.  Where to begin. 
Saturday~ Bob spent some time resting and we did some stuff around the house.  Emily's friends came over Saturday afternoon.  We did a finger food dinner and then everyone got dressed up in their costumes.  We headed to the Zoo for Night of the Living Zoo.  They all had alot of fun.  It went way smoother than expected..2 adults and 7 kids!  :)  Saturday evening we came home and the little ones went to bed and the girls stayed up super late watching movies.
Sunday~ They girls woke up fairly early actually.  We did a big breakfast.  Emily stayed home with her friends and the other 3 headed to church with grandpa.  When one of the mom's came they invited Emily to spend the afternoon at the pumpkin patch.  She happily went.  So Bob and I loaded Eli up for a nice long walk!  Sunday evening Bob and I went downstairs and packed up every single toy and locked them all away.  ALL of them.  They refuse to clean up, and we have had enough.  They will have to slowly earn them back.
Monday~ HMMM.  Oh, Eli had PT and speech.  He did pretty well.  Then we immediately headed out to his surgeon appt.  We met with a new kidney surgeon from OU Children's Hospital.  It looks like we may be switching alot of Eli's docs there.  We will be going down to meet with him next time in Oklahome and will do a full hospital tour.  The rest of the day was just catch up.
Tuesday~ Eli had his next feeding clinic appt in KC.  He did decent.  We finally got somewhere with the lack of communication with the surgeon.  We filed a full grievance report and got patient advocate involved.  The surgeon is supposed to be personally calling us in the morning.  We'll see how that goes.  This took the entire day.  It was exhausting.
Wednesday~ Today was Ben's IEP meeting.  There were 12 of us there today.  It was interesting.  Alot of disagreeing, alot of words exchanged, alot of pushing of viewpoints.  In the end (2 dang hrs later) we came to an agreement and made a plan.  Tons of stuff on his IEP has been changed.  I told them straight up if he comes home with bruises again we will be contacting a lawyer.  Reports have already been filed thru his case management and with DRC, so they knew we weren't kidding.  We have daily check-ins right now with his teacher to keep close eye on how the changes are working.
Today is also my oldest child's 10th birthday.  HOLY COW.  This decade has flown by.  I can't believe that she's 10.  Emily is super excited to finally have acheived the final double digits.  She got alot of great presents.  From her friends a Twilight calendar and stickers, huge candy bar, jewelery making kit, flicka 2 DVD, necklace, and a few other things.  From Bob and I, earrings, her school hoodie that she's been begging for, and her big present this year was a pair of Klipsch headphones for her IPOD.  She's been using them for the last hour straight loving the heck out of the sound quality and their noise cancelling abilities.  She's super excited.  We are doing her birthday dinner here tonight and she will celebrate with her grandparents tomorrow.

As of today Eli is officially sick.  Fever, coughing, gagging, choking, and diarrhea, lethargic and super fussy.  Doc has him off feeds and back on our lovely pedialyte diet.  Hoping this doesn't progress and get worse.
The rest of this week will be busy as well.  Ari has her costume parade and fall party tomorrow, and so does Ben.  Then on Friday Emily and Jace have their costume parades and fall parties.  Bob will hopefully be getting his lab results back tomorrow. 
Dinner is ready, so I will try and get pics up later tonight!

Friday, October 22, 2010

Wow the week flew by

This week went by way faster than I expected.  It's been a rough week.  Ben is off his meds and he is a mess.  It's been one melt down after another.  His 1st respite worker started, but she's only 2 evenings a week.  The 1st night was a mess, the 2nd night she did much better.  So we will see how it goes.  We interviewed another worker for 2 more nights a week so hoping she will start next week.  The oldest 2 are doing great.  Emily's birthday party is tomorrow.  She's having some friends over and we are all going to Night of the Living Zoo and then they are having a sleepover.  Ari is good.  She had her "big girl school" yesterday and she just loves it so much.  She is enjoying being around kids her age, and loves the swimming time.  Eli is pretty good.  He had his checkup with his surgeon this week, and she says he looks great.  We can scheduale his surgery anytime after 3ish weeks from now.  We will make a decision in another week or two.
I had my appt and ultrasound this last week.  I had a fibroid that he was able to burn the tip off to see if that helps.  BUT then he did an ultrasound and come to find out I have 2 very large cysts, 1 on each ovary.  He's concerned about operating because ultimately the goal was to keep the ovaries, hence they were left during the hysterectomy.  He's started me on some meds to attempt to shrink the cysts.  I'm fairly sore, so hoping they work quickly.
Today Bob also had his next round of testing.  It was colonoscopy day.  The good news there wasn't the large pre-cancerous polyp that was there 8 months ago(there was a chance it could have grown back).  The bad news is there were 6 polyps that she had to remove.  They were smaller and she doesn't believe they are precancerous BUT is concerned why he keeps getting these.  We will get the biopsy results next week, and meet with the GI surgeon next month.  She's thinking that there is some sort of overall isues causing all of this.  He struggled a bit with reathing during the procedure and his O2 kept dropping.  He's doing much better now, but just sore and very tired.
I will get more updates up after this weekend, hopefully on Sunday.  Things are busy around here right now, keeping up with all 6 of them!

Saturday, October 16, 2010

Fall is here!!!

It's fall!  It truely feels like fall after today.  We went to the pumpkin patch today, all 7 of us!!!  Well technically 8 as Eli had his nurse!  :)  We went to the same patch we've gone every year, except they have totally revamped it this year.  There were tons of activities.  Barrel train rides, hayrack rides, 3 corn mazes, animal feeding, huge slides, hale bale maze and climbing area, pumpkin patch, and tons more.  They had a great time.  They are now outside working on their pumpkins.  Ari did her potato head pumpkin and had a great time with that.  This is Ben's 1st year to carve with the older 2 and he's super excited about that!  They are all currently cleaning out their pumpkins.

In other news.  Eli had his appt at the feeding clinic.  It went pretty well.  The therapist was really good and very patient with E.  He did horribly.  She said he has a severe oral aversion, which we knew.  She worked on basic oral stimulation and showed us lots of things she wants us to work on.  She said normally they would meet with us 1 to 2 times a week, but since we live so far away they will start with every 2 weeks right now.  So she gave us all of the tools to work from home with Eli.  Other than that he's doing pretty well.  We are working on alot with him right now so we try to be careful not to overload him.  He's still working on sitting completely stable, and still working on tummy time.  Eli has also got 2 new teeth poking thru.  They are 2 top teeth.  Not the normal 1st teeth.  But it's finally his 1st tooth and we are super excited!

Ari is doing good.  She had her "big girl school" again last week and absolutely loves it.  We are hoping to get her going 2 days a week come January.  She got her 1st big girl bookbag and loves it.  It's tinkerbell of course!  :)

Ben is simply ben.  We have gotten him off his meds, so the tantrums have come back in full force.  They are trying to decide which way to go next with medications.  They are finishing up all of his respite stuff.  All we have left is finding the perfect worker.  We are supposed to meet with 1 next week.  His meeting at school is the end of next week.  Hopefully we can get something accomplished with this upcoming meeting.

Jace is doing good.  He's as busy as always.  He's been enjoying this cooler weather and has basically been living outdoors.  School is going well for him and he's enjoying it.

Emily is good.  Her 10th bday is coming up and she's super excited for the double digits.  She's got her bday party planned and is looking forward to it.  She's taking some friends to Night of the Living Zoo and then having a sleepover.  She spends alot of time downloading new music to her Ipod and listening.  Music is by far her favorite thing.  She's got 2 gift cards she's getting ready to use, so I'm sure we will all be hearing lots of new music thru the house!

Bob is miserable.  His allergies are really kicking him in the butt this year.  The doctor has him on multiple meds trying to get it under control.  He woke up 1 morning last week and couldn't even see because his eyes were so swollen.  He's missed a few days of work.  He's spent alot of his time sleeping.

I'm ok.  I have my appt coming up on monday to figure out what's going on.  My doc isn't sure if it's complications from my hysterectomy or what's going on.  I'm hoping for some answers and a solution though because it's really uncomfy and really affecting quality of life.

Life will be busy from now until pretty much January!  :)  This is by far our busiest time of year, but for sure my favorite time of year!  I love the holiday season and I'm really excited to be spending it with my 6 favorite people!  :)   I will get pictures up later today or tomorrow!

Tuesday, October 12, 2010

Quick Tuesday Updates

It's been an interesting few days being dumped into an IEP/ISD nightmare.  Benjamin's ISD meeting was yesterday afternoon while he was in school.  We had great conversation and discussed and made plans for everything that was left to be taken care of.  Then we left the meeting and came home feeling fairly confident that things were going in the direction that we needed.  Ben got off the bus grumpy and we quickly figured out why.  He had injuries on his arm that came from the same boy who Ben's been having trouble with all year.  We've had to file multiple reports with this boy injuring Ben and clearly the problem still hasn't been solved.  So this time Ben had large marks on his upper arm, where he says the boy grabbed him and twisted.  So incident reports were filed and lots of people were called.  There is going to be a team meeting because obviously things need to be changed around at school.  The school attempted to deny me an IEP Team meeting, and I turned them in with a formal complaint.  So hopefully this will be resolved quickly.  Currently Ben doesn't want to take the bus so Bob and I drove him today.  Then this afternoon we had his in-home intake meeting to get his respite services started and we will also be getting his TEACH training done soon as well.

Ari is doing pretty good.  The more she is away from Ben the better she does.  She's looking forward to her kids day out coming up on Thursday!

Jace is doing well.  Busy with school.  He's looking forward to family night at his school tonight.

Emily is doing well. She's getting all of her testing finished up for the gifted program, and is enjoying the work.  Her 10th birthday is coming up and she's super happy about being in the "double digits". 

Eli is doing pretty good.  We are working right now to readjust his feeds and hoping to get back to 5 feeds a day.  He's slowly working on sitting for longer stretches at a time without falling over.  Tomorrow we head to KC for the day for his appt at the feeding clinic.  I'm looking forward to what they have to say. 

Bob has been sick this last week.  All of his lab work came back from his initial appt 2 weeks ago, and there were a few problems.  They are getting him sent to a specialist soon, and in the mean time they are working to get his meds situated better.

I'm ok.  Exhausted.  My meds aren't the funnest and I'm hoping all the side effects go away quickly.  I've been having alot of discomfort, so I have an appt with my OB coming up soon for additional testing. 

That's about all around here.  Busy as always but not a whole lot new to report!  :)
More soon!

Friday, October 8, 2010

Friday Update

Eli is cath free!  He's doing very well peeing, although they are keeping him on the meds for a few more days just to make sure all is working properly.  His incisions are doing pretty good.  A bit red, and lots of bruising but that's to be expected.  One of his steri-strips fell off today and one of the incisions on his poor little neck looks painful.  Poor little guy.  He's still on continuous feeds, but we are hoping to start trying to give him a few hours off the pump during the day.  We'll see how that goes. 

Ari is doing pretty good.  Yesterday was her 1st kids day out and she really enjoyed it.  There are 8 or 9 kids in her class.  They did crafts, had snack and lunch, played outside, and went swimming.  She's already begging to go back and says that next week is to slow.  When we picked her up she was busy telling us all about her day and then paused and said "Mom I missed you, it took you and Bob a long time to come back".  She was super cute!!

Ben is same as always.  He got a formal write-up at school yesterday and we got a call from his principal.  He found a crayon and colored all over the seat of the bus.  It's a constant from school about him stealing things and writing all over things and such.  Not like we didn't warn them.  His respite has been approved, as is the home supports training.  They are going to set up sensory and play therapy as well as a TEACH scheduale.  He will also have respite 7 days a week for 5 hrs a day and that can be extended come summer time.  So they will be here when he gets home from school during the week to help with homework, keeping him busy, encouraging him to eat, and working thru the bedtime struggles.  Hoping all of this begins to help.  Also working on getting his meds changed as these new meds are really causing some major issues.

Jace is busy as always.  He's constantly moving.  He spends as much time as he possibly can outside.  He enjoys riding bikes, running around with the neighborhood boys, and digging in the dirt for bugs.  He's 110% boy.  He's still struggling in school with the written things, but his teachers are great and getting all of the evaluations in place to help him.  They've worked with him on some of his spelling and math verbally and he does much better that way.

Emily is enjoying school.  She's loving the challenge that the new district has been able to provide.  She stays busy with her work and reading and is super excited to be learning cursive.  She's made some friends and is super happy about that.  We are all so happy to see the rewards of the choices we made last school  year keeping her home and homeschooling for the end of the year.  Couldn't have worked out better, as she's really excelling this year!

Bob and I are busy as always.  Keeping up with school and work and the kids and the house.  Last Friday night we went on our 1st date night in quite a while.  Got together with some friends of ours for dinner and a movie.  Tonight we get a 2nd date night and are going out just the 2 of us.  After that it will be every other Friday night!  Super nice!

Tomorrow is Fall Festival in the town we live in.  The kids are super excited to go see the parade and activities!  I'm actually going to join some friends in the parade and throw candy from te jeep.  :)  Then next week Eli  has an appt in KC for his feeding testsing to be cleared for the motility testing.  Then next weekend is the Pumpkin Patch and haunted hause!  the older 2 are super excited to get to try one this year!

more updates soon!

Wednesday, October 6, 2010


We are home.  We got home late last night.  He's doing ok.  His lungs still sound like crap, and he still has his foley cath.  We go back to the doctor on Friday to see if we can try to take the cath out and if he will pee.  Waiting on the PH probe results.  Also have a call into his kidney surgeon.  So we will see how it all goes.
More updates later.

Tuesday, October 5, 2010

Surgery and PICU

Eli checked into the hospital Monday at 5:30am. He went back to surgery at 7:30am. He was out of surgery around 10:30am. His surgeon came out to the waiting room to give us the full details. She had a heck of a time getting a line. She spent over an hour, and finally ended up having to cut his neck open and put a central line in his jugular. She wasn't thrilled by this location at all. Then she did the rigid broncoscopy. She said structurally everything looked good. Then she did the testicular surgery. She was able to go in laproscopically and lower his left testicle into his scrotum and then repair/remove the hernia. Then she placed the PH probe. Tiny man did wake up(sorta) and they were able to extubate him. They decided with his history to take him straight to PICU. Which ultimately turned out to be a good choice. First he had stridor breathing. His heartrate was running a bit high and his breathing sounded like crap. Then his respirations were super high and ended up having to do steroids, extra breathing treatments and all that good stuff. 1 pain med wasn't enough, so they started alternating a 2nd one. So 1 in his central line, then 1 in his GT. Then it was realized that Eli hadn't peed since 7am. So did a fluid bolus. No pee. Had to straight cath him. Did another fluid bolus. Waited 5hrs. No pee. Had to straight cath him. The 1st cath not enough pee came out. The 2nd cath better on pee volume. So they have continued the central line fluids, as well as his continuous feeds and decided to give him 8hrs. He has peed 2 very small amounts. He has until 7am, before calling the doc back.
Right before hitting publish the nurse just came in saying she spoke to the surgeon.  They are going to re-draw some labs thru the cental line.  They are also going to run a bladder scan to find out what's going on.  So more testing.  Fun times.  Again I will update when we know more.
**UPDATE** They did a bladder scan and he had 191 in there which is a TON for a little guy.  The surgeon has decided to simply place a foley cath and leave it in.  We are a bit concerned about going home with a cath.  Waiting on the surgeon to come in to decide what to do next.  Humph.
Here is a picture of Eli before surgery.
Here is a picture of Eli just getting to PICU

Here is Eli later in the evening resting