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!

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!

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!

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 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!

Home

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.

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

3 Appointments done...updates on all

Update from the day.
Eli~ Tiny had his upper GI. They did some goofy testing and nobody is really trusting the results. Sooo Eli is on continuous feeds, instead of his regular feed scheduale. So hopefully keeping the smaller amounts in his stomach we can make it till his surgery on Monday.

Ben~ Had Ben's meeting today. Finally seems as though we are going to get somewhere. They suggested putting Benjamin in an in-home respite from Friday to Monday, but we chose not to have him leave the home yet. So instead he will be going to a day respite program on Saturdays and then he will have in home supports after school and during bedtime each week. Everyone is in agreement that it's the new medication that is causing alot of these new problems, so the rush is on to find a specialist to get the meds figured out correctly. We are also going to be having an emergency meeting with everyone next week, hopefully wednesday to get long term plans in effect. Hopefully this will all end up making everything safer for Ben and for the rest of the kids.

Me~ I had my check in with the doc after all of my labs. She says all of the problems with my ovaries and PCOS have caused a metabolic disorder and the PCOS is really flaring up. She's putting me on some meds to try to help get everything resituated and hopefully get me feeling better.

so that pretty much covers the day. Tonight if all goes well I'm heading to SnB. Eli has his nurse, the older 4 go to my parents for dinner on Thursday nights, and Bob will actually get to work tonight. Fingers crossed!

Eli's rough morning

Eli's been having some issues for the last few days, since friday. this morning i went to get him a new 2x2 and came out to the living room and he was silently choking. I immediately sat him up and leaned him forward and milk poured out. He had refluxed up a ton of milk and couldn't get it all the way up and was choking. Called the doc. All feeds cancelled and he checks in at 1pm for testing. Depending on what it shows he may need surgery now to fix it, or we may be able to change his feeds around and hold until the schedualed surgery on monday. the surgeon is waiting for the page with the results and will immediately make a decision. oh and he's obviously back on his O2 sat/pulse ox continuously.
will update when we know more.

Quick Wednesday Check In

CMH called today to get Eli schedualed for his testing. He goes Oct 13th. He will meet with OT, PT, and the feeding clinic. I'm not sure exactly what they will do. I just know this is the next step before his motility testing. Hoping he does well with his surgery so he can go. Eli also had PT today and did pretty well. He's still working on rolling although it's still alot of work for him and makes him super tired. Eli's doing well with his new nurse. She's been with him for a few days and all is going well so far. Fingers crossed that it all goes well as it's been quite a while since we've had a full nursing staff. We've been able to completely phase out the night nurses so we are back to just our normal regular hrs of day nurses.

Ben and Ari are completely out of control. Last night was definitely the breaking point. We are all having an emergency meeting tomorrow to decide what next with Ben. His meds aren't working and he's struggling at home and school. The choices are going to come down to some sort of inpatient program are full inhome support when he's home to work with him and keep an eye 100% of the time. We will know more tomorrow after the meeting. Once Ben's issues are resolved, we have confidence in Ari situating back down to normal very quickly.

Jace and Emily are doing well. They do everything they can to stay as far away from Ben as possible. The good news is they are getting along with each other so much better as they are spending all of their time together away from the younger too! Hidden bonus. lol.

Bob and I are same as always. Busy and rushed and hectic. We've been trying to get out every day to atleast go on a walk around the neighborhood. I feel so much better if we get a fresh air walk. Tomorrow is my doc appt to go over all of my lab work and find out what next.

Not much else knew I can think of. Like always it's just doing what we can to make it thru each day. More updates soon.

Emotional Day

Wow it's been quite the emotional day. I got my lab results in the mail. This is just all of the numbers and the information, and she will be meeting with me thursday to discuss it. My hormone levels were bad. Some were very high and some were virtually non-existent. I don't understand exactly what it all means but I know it's not good. I'm nervous and anxious for thursday to get here to find out what happens next.

We also had Eli's cardiologist appt this morning. His doc did the ECHO again. This time Eli's number was 35. Last time it as 45. It's supposed to be 15, and 50 is huge danger zone. As of right now there is still no damage to the right side of his heart. But we obviously need that number to go down alot more. His doc is releasing him for surgery since this is something that needs done BUT he warned that anesthesia is going to be a struggle and he is unsure how well Eli will do. He will be on call and available immediately if he's needed. Eli will be retested again in 3 months and by then we HAVE to have his number down or we'll have to move on to more ideas. I hate pulmonary hypertension. humph.

Then the roughest part of the day. Finding out the Eli's motility GI office MAJORLY dropped the ball. Eli had his testing at CMH in KC the very beginning of July. They said they would call in 2 days with the results, and to get the full motility testing schedualed. 3 months later we've been calling and calling and leaving message after message and haven't heard a word from anyone. So Eli remained NPO without testing or an official diagnosis or anything. I finally called AGAIN today and before the receptionist could just rudely transfer me to another damn voicemail system I gave her an earfull. She went and personally found the nurse and transferred me straight to her. The nurses was rude as shit at 1st, and after 20 minutes on the phone of explaining she was at a loss. We hung up and she went and spent 1 1/2 hrs doing some research. She called me back letting me know that she found the problem but that the manager in charge of the hospital would have to call me back This afternoon the manager called me back and WOW. Apparently the doctor gave detailed instructions of what needed to be done next and gave him to one of the nurses. She was supposed to set up tons of testing and such and call us with it all schedualed with detailed instructions. She put the orders who knows where, got busy and forgot to do it, EVER. So now my son hasn't had a drop of anything in his mouth for months during a hugely important bit of time. As of his last swallow study his swallow is getting worse and worse from no "practice". So now Eli can't be cleared for the full motility testing until he goes thru tons more testig to make sure he's safe to have the testing. The are scrambling to cover their ass and get these tests schedualed as soon as possible. I've never been apologized to so many times. I just kept telling her over and over this is my sons life and I have to be able to trust them with my son's life. This isn't having your pants hemmed 2 inches to short, this is my son. I have never been so angry in my life. I don't know what to do. We are now sooo much farther behind and nobody is sure yet the repercussions of this major fuck up on the nurses part. It's an emotional rollercoaster right now. Sadly this is a major sub-speciality of a specialty so that means there aren't many of these doctors around. So it's not like we can just pick and choose who Eli sees.
So now we wait. They are rushing to get all of his testing schedualed.

Monday Quick Check In

Today was my testing. I had a mammogram and then a breast ultrasound. They took a TON of pictures and I met with the doctor immediately following both tests. She said everything looks great and we will do it all over again next year. She said in a few years as long as I don't have a new lump they will start adding in MRI's as well. So it's definitely a relief to know all is good so far!

Mr Eli had his appt with his pediatrician today. We combined his out of hospital recheck with his pre-surgery check. She said his ears and everything look great. She has decided not to release him for Parents as Teachers as she doesn't want him around that many kids and exposed to that much. He is refluxing some again today and choked this evening. So I get to hang out and watch him for signs of aspiration like always. I hate having to watch him go thru all this.

The older 4 are ok. Emily and Jace are busy with school. Jace lost another tooth yesterday. Ben is still very excited about having lost his 1st tooth. Ari is a disaster same as Ben.

Sorry for this update being so short. Tons I'm hoping to get done tonight.

Botanica Picture *Updated*

more pictures to come later, but here is 1 for now! :)


Here is the link to the rest of the Botanica Pictures

Saturday Morning Check-In

It's been a busy few days. Mr Eli has been pretty busy these last few days. He's been working on learning to roll and sit. Up until today he's done pretty well. Today has been rough. He's been choking and gagging and retching this morning. He actually threw up a bit this morning which he hasn't done in 8 months since his fundo. He does have a nurse on this morning so she is watching him for signs of aspiration. Will see how his next feed goes and if any changes will be calling the doc.

Emily is doing well. Had her conferences this week. The teacher said she's doing great and that the additional work is really going well. The re-eval date is coming up the beginning of October so then we will have more information. There will be some additional testing as well.

Jace is doing pretty good in school. They have started his speech and he enjoys it. He has had some issues remembering to take his meds, so we are really have to monitor that.

Ben and Ari are a disaster. I'm not sure what to do with them as nothing is working. Ari watches Ben and is now picking up all of his bad habits. It may come to the point where we will have to look for a residental facility for Benjamin for a bit of time until we can get everything under control. I can't continually have my home flooded, fires, set, furniture and clothing destroyed, and everything else. I don't know what more to do. We have our next meeting coming up with his autism specialist and team so hoping to get a better plan in place.

Bob is back at work for a few. Obviously he'll be back less than 2 weeks, before he's off again for Eli's next surgery. Thank heavens for FMLA, but the loss of money is really hurting.

I'm here, as always. Trying to keep up with the house and kids and Eli. I'm exhausted. My health issues have come to the point where I ended up at the doc this last week. She ran every lab test under the sun and we will meet back up with week for some answers. I also have my mammogram and ultrasound on monday, so nervous about that.

Today we are taking the 4 older kids to Botanica for Free Museum Day. They are pretty excited. Pictures coming when we get home.

Pulmonologist and Pediatric Surgeon

Today was 2 big appts in 1 day. First was the pulmonologist. She said his lungs are sounding good and she's a bit unhappy with how high his heartrate has been running. 1 of his meds is changing to just PRN, and then keeping the other twice a day. Hoping that will maybe help his heartrate lower back down. She says she will release him lung wise for surgery/anesthesia. Also she switched his O2 sat monitor to just nights and spot checks. So that's 1 less piece of equipment we have to haul everywhere and 1 less cord permanently attached to Eli!
Then we had his pediatric surgeon. She's changing up his feeds as he's being gaining 5oz a day. Will check in Friday to see how that's going. Then she's going to go ahead and scheduale surgery. The goal is to do 1 big anesthesia with multiple things going on. A PH probe placed, flexible and rigid bronchoscopy, Orchiopexy (undescended testicle/hernia repair), and possibly a central line, depending on what they can get for a line. She is also talking with the new GI in town and seeing if he can do the motility testing at the same time. Eli would be admitted, obviously, for a minimum of 24hrs but with Eli's history everyone assumes it will be longer.
Not looking forward to another surgery but looking forward to be taking our next step in the direction that we ultimately need to go.
Eli is exhausted after being out at appts most of the day. He's finally crashed out on the floor. The older 4 are playing outside and downstairs, Bob's at work, and I'm getting ready to make homemade pizzas for dinner! hoping for a quiet evening as I'm exhausted.

Time Keeps Flying

Time keeps flying by. I keep saying I'll update more often, and then next thing I know its been a week. I get tons of emails, texts, and calls when I don't update so I figured it would be quicker to just get on and update! :)

Eli is doing well. He rolled to his tummy from his back, not once but twice!!! He did this a few days ago. He hasn't done it since but I'll take it! He's got a double ear infection at the moment, so that's not been super fun. His coughing is getting better and better. He has his overnight nurses until the end of the month and then they end. We have been super thankful for their help during his recovery, but we are looking forward to getting back to our normal day nurse scheduale!

Ari is doing good. She's going to start going to a Mom's Day Out at the Y, and hopefully getting started in a gymnastics class. She's missing being around kids her age so she's excited to get to go. She thinks its school! :)

Ben is doing pretty good in school. We had his conferences last week. Academically he's doing well. She's starting to have a bit of a problem with him roaming the classroom and has to call him back to his seat multiple times. His 1 on 1 stays back alot and waits to see how he does before she steps in and helps. Encouraging him to use his words and ask for help. He got to use the computer at school today so he was super excited about that!

Jace is doing ok. His language and writing is really struggling. They are having the child life team come in and do some deeper testing to find out for sure why he might be struggling. In other areas he's doing super well. They got his speech restarted as well.

Emily is doing well. She's enjoying being in school, as long as the work can be kept challenging enough. We will be meeting with her teacher this next week for conferences.

This last weekend we spent this last Saturday afternoon at a local park for Family Fun day. All of the activities were free, and they had TONS of activities. They got to go kayaking, paddle boating, played tons of games, and had a great time. Once I get the pictures all sorted out I will get them up!

Bob is back to work today. It's been nice having him home. I'm just trying to get back into the routine of being home with the little people and getting the house reorganized. We are completely caught up in 2 out of 3 classes, and are working to get caught up in the 3rd. Our teachers have been amazing so that's definitely helped! The last big news is I filed for divorce and child support about 2 weeks ago. Child support is already in affect and signed by the judge, now if he'll just pay the full amount. Luckily back child support will start to build up and I can garnish if needed.

More updates soon! I promise!

Tuesday Morning Updates

Tiny man is slowly getting better. He's doing pretty good keeping his O2 up, but it's been a bit more of a balancing act at times to keep his HR down. We've had to put him back on his O2 or bump it up a bit, to get his HR to settle back into a slightly lower rhythm. Looking forward to the cardiologist in a few weeks to retest on where his Pulmonary Hypertension levels are and how the right side of his heart is looking. He's still waking up about 5 times a night with coughing fits, although last night was the 1st night that his O2 sat didn't drop any. He's exhausted and already snoozing on the living room floor while his feed runs in.

Ari and Ben are a disaster right now. They spent yesterday getting into everything under the sun in the basement and absolutely destroying multiple things. Ben is stealing things from his teachers desk at school, and we are trying to figure out how to correct this behavior. We have to watch him like a hawk, or he will steal all of Eli's medical supplies as well. They have spent most of their afternoons outside with the older 2 and the neighbor kids, and definitely enjoy that. Ben's new therapy swing came in and we got it set up earlier this week. He absolutely loves it. He's been on his meds for a few weeks, and so far no change. We will all be meeting back up soon to discuss what next.

Jace is busy with school. He's got homework a few times a week, and spelling words tha the has to work on. Like Ben he's been on his meds for a fews weeks as well. Sometimes we think we notice some change, and then sometimes not at all. He's super excited right now because there is finally an almond milk "ice cream" available and he got some for the 1st time. For Jace this is super big news!

Emily is doing pretty good. She loves school, and is doing well there. The work is very easy for her. They've bumped up her work to more challenging work, but it doesn't seem to be enough of a challenge. She's been reading alot, and enjoying that her teacher is allowing her to pick harder books. The attitude has been immense. There is a larger gap right now between her and her siblings, and that's made some things really rough. Emily enjoys spending time talking and playing with Eli. He absolutely loves her, and she is the only one who gets his big laughs. He would have Emily hang out with him all day if she could. They definitely have a special bond, and they both love it!

The kids are off school the end of this week for parent/teacher conferences. Hoping to get some major thinning down and cleaning of their rooms while they are off. The weather looks like it should be pretty good as well, so hopefully they can spend a big chunk of time outside.

Bob and I are really pushing to get caught back up on our schoolwork. Yesterday we got 1 of our classes done, 2 weeks worth of work in 1 day! Today hoping to get the 2nd class caught up, and hoping for the 3rd by the end of the week. Bob will go back to work in the next day or two.
Other than that we are ok. It's alot of auto-pilot right now. We are exhausted, and this time it's taking us alot longer to get resituated and organized back into life. Eli is not recovering as fast as normal, and that makes a big difference as well.
More updates soon!

FINALLY...the promised updates AND photos :)

Sorry I didn't get on yesterday and blog. It was a very long day.
Where to start. Since I last blogged about the hospital stay...
Eli was rushed to the PICU, super sick. Never able to get an IV. He struggled alot. Kept his O2 super high, had to switch between mask and nasal canules. Bagged a few times. Lots of suctioning. Labs galore. 12 lead EKG, ECHO, tons of medications. It was an exhausting scary time for all of us.
Lots of doctors and meetings and heart to heart talks.
Official diagnosis was....pulmonary hypertension, reactive airway disorder, pertusis, pneumonia, and rhinovirus.
It was decided to send Eli home with 16 out of 24 hrs a day of nursing. He's less exposed to things here at home, than in the hospital. So Bob and I were taught full infant CPR and resucitation and how to use the Ambu bag. We were given a huge list of things we had to get done to be able to bring Eli home. We were finally able to leave the PICU and come home late Tuesday the 7th.
Since then we've slowly weaned down a bit on the O2. Watching his heartrate constantly to make sure it's not struggling. With the pulmonary hypertension we can't just watch his O2 sat, we also have to keep a close eye on his heartrate.
He has tons of doc appts over the next 3 weeks to determine the damage and what to do next. He will have his 12 lead EKG and his ECHO redone in 3 more weeks to determine how much damage to the right side of the heart. All of his upcoming surgeries and procedures have been cancelled, indefinately. He simply isn't stable enough to deal with anesthesia.
The kids are happy to have us home, and we are definitely happy to see them. The 8 or 9 days we were in the hospital, were the longest we've gone without seeing them. Bob is still on leave from work, he will most likely be going back this coming week.
The outpouring of love and prayers and thoughts from friends and family and even strangers these last 2 or 3 weeks has been amazing. We were getting over 200 emails a day, many from people we didn't even know. We received prayers from all over the world. We are amazed at how quickly everyone got the word out and the responses from everyone. The food, the help, the visits, the phone calls, the shoulders to cry on, the support, the ears to listen, all of it... We can't begin to describe how we felt. We felt the infinite power of the human spirit and we saw it work in Eli. Just can't explain how we felt. And a thank you isn't enough but we have nothing more to offer right now.
Here are some pictures of Eli in the hospital




Here are some pics of Eli since he's been home and his room.
The link is to Eli's room pictures
Eli's Room Pictures


Here are a few pictures of the oldest 4.
The 1st pic is the 4 kids at EP

The last are of the kids at Riverside Park today. They had a great time. Jace enjoyed climbing repeatedly to the top of the space ropes. Ben had fun, but didn't go as high. Emily was scared to go up at all. Ari refused to go near the ropes and had a great time on the balance beam!








I promise to TRY and keep up better with updates over the next few weeks. Our pulmonologist told us on discharge day "I think we are pretty close to past the point of having to worry about going on a vent at this time." Interesting words to hear when they are sending you home. Which basically tells you we are still busy and stressed and worried alot, and tired and all of that good stuff. But I will try and do better on updating. Sometimes I forget that not everyone is on my facebook page! :)
Much love to all!

Home

I'm sooo sorry I haven't gotten back here to update. I promise to get a full update up tomorrow.
We are home. We got home late Tuesdays night, and we are just trying to get Eli resituated and such.
Soooo that's the incredibly short update. promise I will get a huge long book type update up tomorrow! :)
love to all.

Turn for the worse

At 4am Eli had a coughing fit and it took the nurses 10 minutes to get his O2 levels someone back to acceptable. So Bob packed up quickly and Eli was rushed down to PICU with portable everything for this move. I received a call from the doc at 4:30am telling me I needed to get up to the hospital because they were thinking they were going to need to intubate at any minute and that Eli had a 50/50 chance at the point of making it. I FLEW up here.
The rush was to get an IV going. couldn't get one. couldn't get a PICC line, couldn't get a central line. Anesthesia from these was fun. He went into the 40's and had to be bagged during the attempts. His oxygen did well for a bit after and then took a bit of a nose dive this afternoon Messing with machines and setting constantly. Surgeon here to do a central line cut down in the OR but everything else needs to be stable first.
Eli has pulmonary hypertension which apparenty can be life threatening. He had his 12lead and now is getting his ECHO and then his cardiologist will come in and assess the damage/danger. They are concerned about a blood infection/septic. He has a sinus infection. So right now his surgeon is here, 2 pediatricians, pulmonology, cardiology, and the PICU medical director/intensivist is here.
So right now that's the only updates we have that I can quickly type while they finish the echo. for full updates go to facebook as it's the easiest to keep updated because i can do it from my cell phone.
to find me on facebook my email is ejbamommy@gmail.com
also we want everyone to know that just because we can't respond to each one we are amazed by everyones love and support!!! We have received over 150 emails and I can't even count the text messages and phone calls! I can't wait until Eli is past this and he's older for us to tell them the story about how many people surrounded him and lifted him up during this time. love to all.

Hospital...Super Sick

Sorry I haven't gotten this posted here at all, most of you know from facebook, and the wonderful world of texting! :)
But Eli was direct admitted to the hospital last night. At home his O2 sat dropped considerably and I had to turn up his O2. Doc said bring him in and did a direct. By the time we got here Eli had gone fom his normal 1/2 liter/hr to 4 liter/hr. He was up till 2am getting chest xrays, labs etc. His chest xray showed both lungs worse than ever, full of infection. His WBC was over double what it should be. He has a sinus infection, the pertussis, pneumonia, reactive airwary, and something that we can't figure out they think. They want to do a chest CT, but he's not stable enough for the anesthesia right now. He's getting breathing treatments and CPT every 2 hrs, with deep suction as often as needed, steroids, antibiotics, and all of his normal meds. Right now he has his nose canules on full time, he has a mask running next to him for rescue, and then he has deep nasal suction hooked up to 1 suction machine, and then oral suction hooked up to another. Takes a large group of us to run everything during a "rescue mode".
This has by far been the scariest journey I've ever been on. Watching tiny's O2 sat fall, and watching the nurses rush in, and all of us kicking into "rescue mode" as his lips are turning blue. The moment it's done I realize how scary it is.
There is tons more I'm sure but right now I'm too tired to type it all. I will update more tomorrow.

Super fast updates

Quick Updates.
I'm exhausted tonight so updates will be short.
Benjamin has his 1st loose tooth, and it's super duper lose. He's pretty excited, so we'll see how he feels when it comes out.
Jace and Ben have also started their new meds. Today was day 2. We know it can take a bit to see results, so we are waiting, but definitely hoping.
Emily's school has gotten her started on an advanced work load, which she will do for a few weeks while they do full testing. She's exciting for a bit of a challenge.
Mr Eli is not doing well. He's having trouble keeping his o2 up, so is on oxygen full time and even then it's not where we would like it to be, especially since he's on oxygen full time. It's making his heart rate go up too high. The doc said that working so hard to keep his oxygen up is putting alot of stress on his little heart. It's a mess. He's coughing so much. Treatments and CPT are helping break up maybe 5% off the crap in his lungs and he doesn't have enough strength right now to cough it up. It's not been fun.
More updates hopefully tomorrow.

Emotions

Tonights a feelings blog post. Will there be some updates, sure. But mostly tonight is me dumping all of my feelings into words.
I'm so damn angry 1st of all. Angry that this is my life. Angry that I'm having to fight this battle every single day. I'm never angry with Eli or the kids but angry with the situation. Angry with our DME when something doesn't work, angry at the pump for beeping, angry at the clock for going so fast, angry at the nebulizer for leaking. Angry at everything.
Then I'm jealous. I'm jealous of everyone who doesn't have to go thru this. Everyone who gets to sleep thru the night. Everyone that gets to curl up with their baby and take a nap. Everyone who gets to nurse. Everyone who can just load their baby in the car and go shopping. people who don't need nursing scheduales, and 14 specialists, and scheduale making, and hours counting, and report 2 times a day minimum, and vitals and stats and meds. i'm so damn jealous of everyone who can just cuddle their baby. i have to adjust a minimum of 4 cords everytime I want to cuddle my son.
then i'm sad. sad because i have to watch my little man go thru all this. it's hell on him. the torture his little body goes thru it's not fair. (that takes me full circle to angry). then i'm sad for my 4 older kids. they have to watch tiny go thru this. they don't get a "normal" life. they know what each monitor is what it does, how to run it, what each beep is, what the numbers mean, how to carefully move their little brother to play with him, and worst of all they know how tough it is to take him places. they know that the 5 after school activities that they might want to go to can't happen because i can't be in 4 places at once and haul tiny along. i'm sad for me....yes i do have a little pity party (as some would call it) for myself sometimes.
i'm tired. oh soooo freaking tired. am i physically tired. i think so. emotional and mentally. pretty sure. do i know for sure anymore? i'm not 100% positive. i'm so exhausted and so numb. i don't know which way is up or down half the time anymore. we don't sleep. we are up and down all night trying to help eli stay safe and comfortable.
i'm lonely. i miss my friends. i miss getting together with people. i miss playdates. i miss company. i miss chatting and gossiping about things that mean nothing. i miss conversation that doesn't revolve around heartrate, respirations, o2sat numbers, GT feeds, and medication doses. i want to do something that doesn't affect someones life deeply, i don't want to know that i have to be in charge. i don't want to be responsible for 5 minutes.
i'm so tired of hearing how strong we are. i'm so tired of hearing that nobody knows how we do it. i'm tired of hearing if there is anything we can do let us know. i'm tired of hearing "praying for you" "hope all is well". it isn't well. prayers aren't fixing it. i want someone else to be strong right now. i want someone to tell me it's ok to absolutely fucking lose it and curl up in a ball and cry. i want someone to call and chat and gossip about meaningless nothing, because what everyone doesn't get is it means soooo much to me right now.
i just want my life back. i want to feel normal. i want to be me for 5 minutes. i want to just break down and lose it and know that it's ok and that someone else can be strong enough for me too. i want my tiny man to get better. i want this to all magically be ok.
oh and did i mention i'm scared. scared might be a main one, maybe, i think. i'm scared about what next. when will it end? when will it be ok? everytime my phone rings and a doctor calls i'm scared what they will say next. everytime something beeps i'm scared. i'm scared that i can't keep doing this.
i'm sorry this is a huge dumping post but i don't get to dump often. it's normally fake strength and a smile and just keep pushing thru in auto-pilot. fucking auto-pilot.

to end with a funny. i saw his today and thought it was hilarious so have to share, so as not to depress everyone with the above post...
"It's all fun and games until you realize the "rocket" in your kids's Lego launchpad came from the drawer in your nightstand..."

Love Being Right

"In terms of age in years, dictionary definitions generally designate preadolescence as the years from 10 to 13 (ages 10-12 for girls and 11-13 for boys),[4] although there is no exact agreement."
"A blend of between and teen,[5][6] "tween" in this context is generally considered to cover the age range from eight to twelve years."


The above is from
Wikipedia Preteen

Monday Afternoon

Bob~ His new work scheduale started yesterday. It's definitely going to take some getting used to. We were both definitely tired this morning. He's trying to get into the new work scheduale routine and school that started this last week as well.
Me~ I'm busy with the kids and school. Not much changes with me. I go for my 6 week post op appt on Wednesday and I'm ready to be completely released back to normal life. Other than that it's same old same old for me!
Emily~ She's enjoying school, mostly. The work is way to easy for her and she's super bored. She's having to take her own books and such to school because she's past the level that they have available. It will take 4 to 6 weeks for them to finish getting her fully tested for the gifted program, but then she can again hopefully be challenged a bit at school. Other than that she's doing well. We have all the lovely preteen issues going on, but we knew that was coming soon.
Jace~ He's enjoying being back in school as well. He has already made quite a few friends, and has already been invited to a birthday party this coming weekend. He's excited about that. He had his 1st spelling pre-test today, and struggled a bit, so he'll be spending some afternoons working on that.
Ben~ He's doing pretty good with school. The work has been pretty easy for him so far. He's struggling a bit with the busy afternoon at school, and is falling asleep each day on the bus. Luckily the neighbor girl wakes him up when they get to our stop and walks home with him. His swing is on backorder, so won't be in for approximately 30 days. He's looking forward to getting it. Then he can safely swing and hang upside down!
Ari~ She's bored. Super duper bored. She's not quite sure what to think about everyone being gone so much. We are going to have to look into moms day out program or something so that she can have a chance to be around kids her age!
Eli~ Tiny man is still sick. He's pretty miserable. So far he's lost 1 1/4lbs and has been off of full feeds for over a week now. As of this afternoon the doc has put him back on full feeds, with a pedialyte bolus between feedings. Hoping that will atleast keep him hydrated. He had PT today and has definitely lost a few of the skills that we were beginning to work on. He also met with the ENT today. They did a basic nasal scope and said all looks good there. The ENT and pulmonologist will be getting the rigid and flexible broncoscopy schedualed as well as the PH probe. The ENT is unsure yet about Eli's lack of verbalizations, and PT and speech are going to at this time continue working to get Eli to begin using sign language. Once he can wave, they will really begin to push signing with him.

I don't know what else is coming up this week so far. I know there is stuff, but I honestly don't remember what. Right now with Eli being so sick it's really been a day by day kind of thing. I will try and get updates and pics up soon!

1st Day of School Pictures

Ben is curled up with me on the couch so I figured I'd sort thru the 1st day of school pictures and actually get a few up! :)





Benjamin had no interest in taking pictures so they are all pretty goofy.

I begged him for 1 smiling picture and this is what I got! :)

Full Household Updates

For those of you who think Brian is an amazing man, (from what I know there are none of you out there that think that, but just in case) here is his newest comment.

"Seems to me the spawn of your adultery partner is stealing most of my kids' thunder.
By Brian on Everyone's sick. at 12:31 PM"

This coming from the man who hasn't called, emailed, or texted to ask not 1 single question about HIS kids. I spend every day and every minute and every penny caring for them, he does nothing yet he thinks he has the right to post shit like that? WTF

Anyways on to shit that actually means something at all.

updates forward to backward this time! :)

Bob and I~ Bob's working, and we both are busy with school. It started for us this week as well. All of our classes are online, we only have to go to school for our A&P lab. So that's nice. Bob's scheduale changes starts on Sunday, so that will take some adjustments.

Emily~ She's doing well. She's already bored with school. They are working on basic multiplication, 0's and 1's, which Emily and I learned last year with homeschooling. They will begin her testing soon for the gifted program.

Jace~ He's excited to be at the elementary school this year. His class is starting off slowly and hasn't had any homework yet. He is super excited to be reschedualing his next baseball game, since the last one ended in a rain out!

Benjamin~ Today was his 2nd day of school. He's done well so far. He's been on the big boy bus and has done well. He's pretty tired by the time he gets home from school, so it's a bit of a push to get him to make it till bedtime, but so far so good. They are working on getting his in home speech set up so they can get the TEACH scheduale set up more efficiently at home.

Ariana~ She's missing everyone as they've all gone back to school this week, but on the other hand she has enjoyed the afternoons with just the 2 of us. This afternoon we went out and got her hair cut. She's looking super cute!

Eli~ My tiny man is still miserable. We had the pulmonologist yesterday. She's going to go ahead and get everything schedualed or the flexible and rigid bronchoscopy. They are also going to run a 24hr PH. So hoping that will give us some more answers. Today Tiny had to go back to the Pediatrician because his cough is just getting worse and worse. They have finally figured out what's going on....Eli has pertusis, which is whooping cough. He's already been treated for it, so he's no longer contagious, but now we are just left with this horrible cough. He's miserable. The rest of the house is being put on a propholactic dose of antibiotics just in case. ***almost forgot. this morning was the genetic counselor and geneticist. They decided to run a full chromosomal test. It s a microarray that looks up and down every piece. It will take 6 to 8 weeks to get the results and then we will go from there.***

Not much else new is going on. Just getting thru each day. More updates in the next few days as well as pictures from the 1st day of school.

quick update

quick update and i will get full info up later today.
eli is getting worse and worse. met with the pulmonologist yesterday. she's going to be schedualing a 24hr minimum hospital stay for the flexible and rigid broncoscopy and endoscopy. also pushing for sleep study sooner.
today is the local genetic counselor with video phone conferencing with the genetic doctor in Louisiana. I'm excited and nervous. maybe we will finally get a full diagnosis. maybe we won't get shit and we'll just be told we have no idea what's going on and what's causing all of this, we have no answers, but we promise to keep trying.
humph i'm so damn tired.
more updates later today.

Jace's 7th Birthday

Jace had his 7th birthday on the 6th of August. We had a family dinner here at home on his birthday and he got to open a few presents. Then yesterday was his big present and party. He has been wanting to go to a Wingnuts baseball game so my mom looked into their party packages and he was had no clue! We were able to keep it a secret all the way up to pulling into the parking lot! He had a wingnuts cake and got a picture of the team! Then we had front row seats for the game. THEN he got to throw out the 1st pitch from the pitchers mound! He got to meet spinner the mascot, check-out the dugout, meet players, get autographs, and get to keep the 1st pitch ball! He was super excited! As the game was beginning a few low rumbles of thunder could be heard and a few drops of rain. Once the game had began I took my dad and Eli home and everyone else stayed. With my dad not being able to see anything and Eli still getting over being sick everyone figured that was best. Everyone else got to watch the game, until it was ultimately called because of the massive thunder/lightening and rain. Jace is now even more excited to go to his next game! :)
I will upload some pictures now, but can't seem to get the video of his pitch to upload right now.

Jace's Cake

Jace and his friend eating cake

Jace and friend tired of pics

Bob and Eli hanging out after cake and presents

Wingnuts sign and flag

Everyone waiting for game

Bob and Eli hanging out in the seats

Jace getting to meet some of the players

Jace and Spinner the Wingnuts Squirrel (As you can see Jace was getting super nervous/excited about his 1st pitch coming up in a few minutes! He did great though and was super excited!!!)

Jace getting to checkout the Dugout

Flag Ceremony before the game began

Eli getting worse, not better

HOLY CRAP. it's been a loooong day. Ended up in the ER with eli. He was coughing and gagging so badly. They did treatment and suctions and tests. Sent us home to wait for new medical supplies. We now have an O2 sat monitor and a suction machine. He's on continous oxygen, and breathing treatments every 3. He's miserable. My poor tiny man.
the good news is we got to try out the brand new hospital out here in Maize. It just opened on Monday and it was super duper awesome! Would 100% reccomend it!

Everyone's sick.

It's been a heck of a week.
Bob and I had our 4 day Biology rewiew, for 4 hrs a day, 2 tests a day.
Saturday morning Jace woke up sick. Monday middle of the night Emily got sick. Tuesday middle of the night Ari got sick. Wednesday middle of the night I got sick.
This is ALL on top of Eli being super sick.
Bob ended up having to call the doctor at 4am this morning. Eli was coughing and choking and gagging so bad he could hardly catch a breathe. So we are back on breathing treatments every 3 hrs followed by 5 minutes of CPT per side. They are trying to get him an O2 stat monitor. He's on oxygen pretty much constantly right now. He's miserable.
Jace, Emily, and Ari are all better mostly. Ari is still a bit tired but her stomach is all better. I'm done with the stomach part as well, that piece was super short lived for me, but my body can't seem to get past the fever that I've had all afternoon. My head is throbbing.
So all in all it's been a crap week. luckily our class is done and now we start our semester classes on Monday. Highly unlikely that we will ever take a 4 day class again.

Sick Mr Eli

Mr Eli has pneumonia. His cough never went away and just kept getting worse. To the point he was choking and gagging. Doc had us bring him in today. His O2 was 93% and he's grunting. Did a chest xray and sure enough Eli has pneumonia. No freaking clue how that has happened. As Eli is obviously NPO. So all we know is fluid is getting into his lungs and we don't know how. Going to keep him on the Ktank as it's the purest oxygen right now for ALL naps and sleep, instead of just the longer ones. Call into the pulmonologist so just waiting to hear back from her.
I'm scared. I don't get what the heck is happening. I just want Eli to be ok. I don't understand why my tiny man can't get a break. It's just not fair.
More info when we get it.

Proof

My kids have a roof over their head, gas, electric, water, trash service, phone service, cable/internet, they have a bedroom, each of them has a bed. They have working bathrooms. They have clothes in their closets, shoes, shampoos, soaps, hair accessories, general bathing/hygiene products. They have toys, books, colors, bikes, balls, movies, Nintendos, Wii, computer access. They have school supplies, bookbags, PE shoes. They have food, 3 meals a day and 2 snacks. They have unlimited access to medical and dental and prescription as needed. They have holidays, birthday partys, birthday presents, cakes, friends over, get togethers, family adventures, etc.
They have not gone ONE SINGLE DAY without. NOT ONE.
Has it been rough? Sure. Has it been worth it? FOR SURE. My job as a parent is to sacrifice so that my kids have what they need. I have sold every piece of jewelry, every designer purse, every piece of designer clothing, every single thing I can scrape together of mine, I've sold it. I've gone without food or snacks for myself, so they could have what they need. We are going to school to be able to get better paying jobs, and we are doing it online so we it won't interfere with caring for the children. Bob has worked countless hours of overtime to be able to pay the bills. We've budgetted, we've cut corners, we've clipped coupons. We have 1 vehicle, because we simply can't afford 2. We live in a city that doesn't provide busing, so no vehicle isn't an option for us. We watch where we drive so we can save on gas. We make what we have last and stretch.
But my children haven't suffered NOT ONCE. I have provided. They have what they have because of the sacrifices that Bob and I have made. Do I want a reward for sacrificing? HELL NO. It's my job. I'm a parent and that's what you do. My reward is watching my children grow and be happy. My reward is during grocery shopping my kids are searching thru the boxes of cereal looking at the price per ounce and thru the coupon holder to see what we have coupons for. My reward is watching the excitement on Jace's face when he opens his present and it's a used copy of Mario Kart for his DS. He doesn't care it's used and was WAAAAY cheaper. He just cares that it is something he wanted so badly, and he finally got on his 7th birthday. My reward is Ari running along behind everyone shutting off lights, cause lights cost money. Ben closing all the blinds in the house to keep the house cooler. My kids are learning how to budget and save money and how much things cost. They are learning to appreciate the roof over their head.
I get the joy of talking to my kids every day, watching them grow, being part of their excitement when they lose a tooth, or when their surprise birthday party is coming up. I get to watch as Ben learns to read his 1st words. I get to celebrate with Ari for finishing her potty learning.
NEVER EVER EVER does anyone have the right to question what I'm doing and if I'm responsibly spending MY OWN money. My kids have a roof and utilities and clothes. What more freaking proof do you need?

Oh and did I mention that I've spent the last 2 years paying the price for bills that were incurred during my marriage? I've paid all the utilities here that were never paid, I've lost my dang taxes for 2 years now to back taxes. I'm left with the van payment, the furniture payments, I have collection calling constantly for bills that were incurred. And lets not forget that I'm paying for the 4 children and raising them 100% without their father because he's enjoying eating every meal out, going to casinos, bars, karaoke, smoking cigarettes and cigars, drinking alcohol, having someone else clean his room and do his laundry, purchasing electronics, travelling to concerts, and visits, and who knows what the heck else he's doing.

Monday Check In

Today was the 1st day of classes for Bob and I. It was a long 4 hrs, but nice to be back in class and working towards our goals. This class goes for 4 days, 4 hours each day. We have 2 quizzes a day, for a total of 8. Our entire grade is based off of these 8 quizzes. Today we had the 1st 2, and I scored 100% on both. Super happy about that. Now to just make it thru the next 3 days. Our full class scheduale starts next week, and all but the lab will be online. So that will be nice.

The kids are well. Jace turned 7, this last Friday! I can't believe how much time is flying by! His party will be this coming Saturday and it's a surprise! I will post details AFTER the fact! :) Don't want to risk him finding out!

Emily, Benjamin, and Ari are all doing well. Enjoying their last week of summer before school starts back up. Luckily for me all of my kids enjoy school, so it's not an issue at all for them for summer to be coming to an end!

Eli was doing well. He's been slowly gaining. He just can't seem to get past this cough. He's coughing so much today I guess that he's been gagging. I have a call into the doctor currently and just waiting to hear back.

Not much else in news honestly. Life is busy as always. This Friday is date night and Bob and I are definitely looking forward to an evening out just the 2 of us! Then we have 1 more week before scheduale changes. Fun times.

More updates soon.

Busy Week so far

It's been a super busy week so far. Bob worked 12 hrs sunday and monday, then worked 7 1/2 hrs tuesday night, then 12hrs again today and tomorrow. Then our nurse was sick, so it was me at home with no vehicle, no hubby, and all 5 kids. Fun times! The AC crapped out, so it was super hot for many days. They finally got it fixed, and it's been much better since. There was a leak and it took a bit to fix. I did however get some crochetting done. I finished a blanket for Mr Eli. He is in love with it and has enjoyed curling up with it for naps.
Lets see...Other news.
Eli had his monthly appt with his surgeon. She said he looks like such a little chunky monkey! Which comparatively he does! He's 14lbs!!! Getting so much bigger. She increased his balloon from 6cc to 10cc, to see if that helps with the bit of give and leaking. Eli also had PT this week. Did alot of pre-crawling, pre-sitting, and some basic rolling work. He gets tired so easily. Only can seem to work on these things for about 3 minutes before he's beyond exhausted. And by exhausted I mean to the point where he can hardly even keep his eyes open. She's concerned that his oxygen is dropping during the day as well, especially when he's working, and suggests we talk to his Pulmonologist about all of this. Which we will be meeting with soon!
Emily got enrolled in school this week as well. She's super excited. They will immediately begin her testing for the gifted program, since academically she is so far ahead. We are keeping our fingers crossed that socially it isn't as hard for her this year. Last year was rough for her in school.
Jace is super excited for school to start. He's going to a new school, since he is no longer in primary school, he gets to go to the elementary building to start 2nd grade!!!
Benjamin of course will be in the primary building for kindergarten. We have his IEP transfer meeting next friday, and we are really looking forward to getting some detailed information and getting everything set up for him. He will have a para and that will help, but we definitely have some other things that need discussed.
We are going to look into the parents as teachers preschool program thru our district for Ari as I think she would really enjoy that time to be around kids her age.
Bob is working working working. Not much else to report. We are all so proud of him, and everything that he does for our family. Looking forward to spending this weekend, and celebrating Jace's 7th birthday!
I'm doing pretty good. Still sore by afternoon, and exhausted by evening but able to do a bit more each day. I don't have another check in with my doc until 6 weeks post op so that's good.
More updates as I can. These next few weeks are hectic. Eli has multiple appointments, the kids start school, Bob and I start school, Bob's scheduale changes at work, and who knows what else will come up!

8 months old today and he half rolled!!!!

I got Eli all hooked up on his feed and situated him flat on his back in bed like we always have. Went back in when his pump was beeping and my tiny man was up on his side sound asleep. He got to this point AND held it in a fashion that he was able to fall asleep and stay there!!! Maybe he will figure out how to roll! i know at 8 months old this seems WAY late but for Eli this is a huge accomplishment! i'm super excited for his PT to get here on Tuesday and tell her.

Being a typical mom I grabbed my cell phone, turned on the light for half a second and took a photo of my tiny boy. It's a crappy pic and the light sucks but i don't care! i'm super excited!