Friday, July 30, 2010

Quick Check In

Sorry for the delay in updates. It's been a super busy week.
Mr Eli is ok. His wet cough turned into a croupy cough and ended up at the doc today. Chest xray came back clear luckily. Put him on meds for the cough, and also gave him some cream for his excema. He's got a low grade fever, and is super sleepy. Hopefully he will get better quickly.

In other news Bob and I are officially college students. We got all of our paperwork finished up today. We start classes August 8th I think it is. We are taking 18hrs this semester, but all but a 2 hr lab is online. So not bad at all. We are super excited to finally be seeing the light at the end of the tunnel!

More updates to come soon. i promise! i'm just super sleepy tonight and have a headache and tiny man is super fussy. Bob is back to work on Sunday, so will try and get caught up then!

Tuesday, July 27, 2010

Home and sick tiny man

We are home. And tiny is of course running a fever. luckily our pediatrician is totally awesome and gave us her personal cell phone for these types of situations. We called her and she told us exactly what to do from her vacation cabin in Maine. YIPPPEEEE! No ER for us right now. The dumb on-call docs are always worried about diagnosing Eli over the phone, and the ER docs are terrified of all of his medical issues so we are always immediately admitted. It's frustrating as heck. So our pediatrician was tired of dealing with all that mess, so now we can just call her direct no matter where in the world she is! :)
Hopefully he will feel better quickly.

more updates soon.

Monday, July 26, 2010

Kansas City Day 2 CMH Day

Today was a LOOOONG day. We got up, got all 7 of us thru the showers and had breakfast here at the hotel. We headed to the hospital and WOW. There was alot of people, alot of waiting, alot of moving from area to area, and the kids didn't do so well.
Bob stayed in the waiting room with the kids during testing.
1st was Eli's esophagram. Got him all situated and got the barium ready, and Eli really struggled. He couldn't get his swallow well at all, and had trouble getting enough down to even fully run the test. He coughed once and everyone was concerned he aspirated, then a minute later he coughed and sputtered again and we clearly saw the barium enter his lungs. So the test was obviously immediately stopped. They knew his history so they had the suction and everything ready to go. They were super great! Gotta love being at a children's hospital.
Then we immediately went into his kidney ultrasound. His right kidney was huge and completely full of fluid. It looked horrible.
We met up with Bob and the kids and had a quick lunch and headed up to the kidney surgeon. He said we will continue to wait on the kidney. We will do ultrasounds every 3 to 6 months. We will however go ahead and do the testicular surgery. He thinks their is a hernia that is keeping his left testicle from descending and he still can't feel anything on the right side. For the surgery Eli will be cut open on the left side and they will attempt to remove/repair the hernia, and lower the testicle. He won't know for sure until he's in there, and he says at this point nothing is a guarantee. Until he can actually see it, he can't guarantee if he can fix it, and what Eli's reproductive prognosis will be. So this surgery is schedualed for October 19th. Because Eli is high risk we have to do a ton of pre-op stuff on October 18th, including meeting with a pediatric anesthesiologist, and tons of other things. So it will be quite a few days in KC.
We checked in with the GI clinic, and they are going to wait for full test results and a chat with the doc. They are hoping to get his scope and motility testing done on the same day as his above surgery. Since he will already be under anesthesia they would really like to do it all at the same time.
During all of these tests and visits Bob spent tons of time in and out of the bathroom. We think Ari has a UTI and was in and out of the bathroom 700 times. She had an accident, luckily the hospital gave her a change of clothes. The kids got fidgety and fussy and bored.
This evening we went to the Plaza and had dinner at the Cheesecake Factory. The kids loved it! They thought the cheesecake was "to die for".
Now we are back at the hotel and tiny man isn't happy. He's soooo sleepy and honestly his breathing isn't quite as good as I'd like it. Hoping to get him situated soon. If not will call up to CMH and see what they suggest.
More updates later.

Sunday, July 25, 2010

Kansas City Day 1

We are in KC. We got in around 11am. Headed to Union Station to hang out at Science City. (For all the Wichita folks if you have an EP membership you get into science city for free!!!) We hung out there exploring all 4 floors for a little over 3 hrs. The kids had a great time getting to run around and have so much hands on experience with such a wide variety of things. Eli did really well, thank heavens! After that we headed to our hotel and got checked in and all moved in. Hung out and relaxed for a bit then went out to dinner. Now it's movie time!
Tomorrow we have to be at CMH at 10:30 for all of his testing to begin. 3 tests, then we meet with his kidney surgeon. Then we wait to hear from his GI surgeon/motility specialist. Tomorrow night we are going to head to the Plaza for dinner and walking around and hanging out. Pics and more udpates to come!

Friday, July 23, 2010

Updates on All

Sorry for being so behind on updates. It's been a long slow week and I just haven't felt much up for updates. Quite a bit to update on so I will do the traditional person by person! :)

Eli ~ He's doing his typical gain/lose day. Right now we are on a lose run, BUT we have still gained compared to before. He's right over 13lbs!!!! He's still meeting with PT atleast once a week and we are working on sitting skills, rolling, and hand movements, grasping, etc... He's still hating the oxygen at night and most mornings wakes up with it between his eyeballs, in his mouth, over his head or wherever else he can pull it too! :) We leave for Kansas City on Sunday and he has all of his next kidney testing and his appts with his surgeon all day monday. We are also hoping to get some more answers from the motility specialist while we are there as well. He got all of the tests on CD and is going to try and go thru them all while we are in KC. His feedings have finally been increased and we are hoping that helps hold him over a bit and gets us on a steadier gain path! We are still waiting on the lab results for all of the fat absorption tests.

Ari ~ The little princess is quite the handful. Her tantrums are extensive and her obsessions lately are out of control. My parents had her last weekend and my dad was shocked by the fit she threw. Said she could beat Ben most days hands down! Not like that's a good thing though. She now has her bedroom downstairs in girl world with Emily. It's working out well and she loves having a larger room for all of her girl stuff!

Benjamin ~ He's Ben. We had his next visit this last week with the autism specialist and it was incredibly informative. We have a plan in place and everyone is getting their end of it done. He's going back thru the funding committee for the swing and for in home respite. He's also pushing for a full neurological testing, as he's wondering if he's having seizures. Also IQ testing, and wants to start some meds to see if we can help calm some of the OCD/obsessive behaviors. He says that is a huge problem that may be triggering alot of the rages. He says ultimately we will need to start pushing Ben's rules, but right now Ben isn't in a place to do that. So hoping the meds will allow for that more. He wants to get full picture scheduale in use, and is wanting in home supports for a couple hrs in before and after school to begin implementing all of these things. He wants to start a full sensory diet, and gave ideas of how he wants to get that all set up. Also he's pushing for the swing, so Ben can have that option to help himself relax. He wants us to do play therapy multiple times a day, and attempt to stop STIM behaviors as quickly as possible. Ben starts school in just a few weeks so there is a big push to get alot of this done before school starts. We are finally starting to feel a bit more confident with our team, so are relieved about that!

Jace ~ As we've been working with Ben and having so many of the inhome testing and observation some talk has again resumed about Jace. The hyperactivity and impulsivity is massive and out of control. The attention isn't really an issue, still. It was strongly suggested to try some new meds with Jace and ideas were given. We are super excited for some ideas as we spend most every day at the end of our rope with him. Calls into the doc to get everything started!

Emily ~ She's excited for school to be starting soon. Her allergies have been horrendous this last week or so, and she's been pretty miserable. Call into the doc, hoping to get her started on a new allergy med to help relieve some of the symptoms. As her allergies get worse, her asthma gets worse, making nights rough for her with all of the coughing.

Bob ~ He's doing pretty good. He's off work for 2 weeks right now. Since I'm such a slave driver and make him work so many hrs to support us, I'm now making him not work to stay home and take care of me and the kids while I recover from surgery! :) He's enjoying his 2 weeks off, and having a great time getting to hang out with the kids. He's been working on getting the house organized, and getting some of the little chores done that he's been wanting to get done, but just hasn't had the time. He goes back to work the beginning of August. Then center-wide scheduale changes happen Aug 22nd. We still aren't 100% sure what we think of his new scheduale, only time will tell!

Me ~ I'm ok. Still sore and moving slowly and in small spurts. Still not able to drive as my muscles are still really sore. I'm sooo ready to be completely recovered and for all of this to be behind me. I had no idea that recovery was going to actually be this rough. I figured it would be more like childbirth, up and moving right after. I'm enjoying spending time with everyone, and having some down time to just relax!

I think that mostly covers the udpates for now. Will update this weekend as we have more information from KC and all of that!

Monday, July 19, 2010

Home Recovering

I checked into the hospital Friday for surgery. They got my IV started and all that good stuff, and then we waited. My dear surgeon was running late. The waiting sucked. Finally went back into surgery.
I don't remember anything until VERY late at night. All Bob could explain is that they found a problem and my ovary was stuck and he couldn't remember all the words. I was in quite a bit of pain, and the morphine drip was making me sick as a dog. I have never been so dizzy or nauseus in my life. They stopped the morphine finally and started me on pain pills. Same effect. I couldn't open my eyes or move and they weren't helping with the major pain. The surgeon came in and explained it all to me. My left ovary was attached to the back of my uterus. All the excessive bleeding had been back-flowing into my fallopian tubes and had caused endometriosis to form, which in turn had caused my ovary to get stuck. Hence all of the discomfort I was having. This problem however required me to be in surgery for 3 hrs instead of less than 1. So my body was screaming from being up on the strange OBGYN surgical table. I had no idea that my hips and back could even hurt this badly. I could hardly walk, couldn't sit, lay nothing.
I have hardly slept, and have to change positions about once an hour. All of the pain meds make me sick so I'm only on tylenol and motrin. Fun times.
This morning I'm moving a bit better but still super sore. Slowly getting a bit of an appetite back.
Missing cuddling with Eli, and still haven't seen the older 4 kids. They will be coming home late this evening. So ready for all of this to be over and to be fully recovered.

more updates when i can.

Wednesday, July 14, 2010

Wednesday Evening Updates

There are so many things going thru my mind right now. I've got so many major changes coming up. I've got my surgery, Bob's big scheduale change, Eli's constant changes, his appt in KC to hopefully get both of his surgeries schedualed, Bob's repeat colonoscopy from January when he was weeks away from cancer, my little sis's wedding out of town, and in general a house to run and all that good stuff. I'm nervous that I don't have enough time or energy to get it all pulled together and organized.
We spent probably 6 hrs today working on scheduales for July and August for all of the nursing. You would think this would be easy but it soooo isn't. It's a constant juggling act that we can't quite seem to get organized. I think we went thru like 2 trees with all the paper we kept using trying to figure it all out.
So here's the rundown on the household! :)

Emily~ She's getting super excited for school start. We will be getting her officially enrolled next week I think it is. We are hoping that's she's ready, not academically but socially. We will immediately be requesting her IQ testing and all of the testing for the gifted programs so that we can get her started in that ASAP. Hopefully that will help keep her from becoming so bored with the school work.

Jace~ He's sort of ready for school to start. He's excited to get back with his friends and meet some new friends, but school isn't quite as exciting for him as Emily. All of his teeth are finally growing in so he's at the halfway point from all of his resently lost teeth. Still such a cute smile. We will be taking him back into the doctor for his school physical and again discussing what medications we would like to try and some different dosing options. We have to get his behaviour under control, and not much seems to be working.

Benjamin~ He's not quite as sure about starting school as he was. He'll be in the afternoon kindergarten again, so atleast it's a scheduale he's familiar with, but that's about it. He's been a bit clingy lately, and incredibly destructive. We did meet with the behavioral psychologist and he can't believe that Benjamin isn't getting more supports inside and outside of the classroom. He's having his intern come into the home and just spend some time observing Ben. We all meet back up on the 20th.

Ariana~ She's just the little princess. She's enjoying being fully done with the whole potty learning thing, and still loves to announce it to everyone! She on a dresses kick right now and wears then every single day, even to sleep in. Makes for alot of laundry! We would really like to get her started in a preschool program, but we just aren't sure if that will be possible.

Eli~ He's my tiny little cuddle bug. He had gained a bit of weight and over the last few days has lost some, but we are still higher than where we were a few weeks ago. He's now at 12lbs 5oz. Still no where near the chart, but atleast gaining. He's still meeting with PT once a week, and we really enjoy her and think she's been a blessing for Eli. It looks as though we will be upping his feeds here soon, just trying to figure out the best way to do that. He's not yet gotten used to not nursing, and still tries to nurse on everyone constantly. He's working on tummy time and sitting and standing with supports. Still working on grasping at toys, and hoping soon he'll start to take them more to his mouth to chew on. He's sleeping good at night, now if only we could get him to leave his oxygen on life would be great! :)

Bob~ He's busy as could be working. Scheduale change comes up next month, so we are hoping for a decent scheduale but not holding our breath. He has his repeat colonoscopy coming up as well and he's obviously not looking forward to it. He's been pretty busy, between work and picking up the slack in the household as I've been pretty out of commission this last week. I can't imagine life without him!

Me~ I've got tons of emotions going on right now. I would love to say I'm numb, which I sort of am, but I'm also like 500 other things. I think I cycle thru the whole stages of grieving hundreds of times a day. I know that might not sound possible, but let me tell you I think it is. I check into the hospital Friday at noon for my surgery and if all goes well I will be home on Saturday to finish my recovery at home! I will have round the clock help from either Bob, or nurses, or our dear friend!
A good friend of ours has 100% been my saving grace. She has jumped in and taken over my household when I simply can't do it. She's been my rock and my sounding board, and my laugh. Which is oh so important. We are sooo blessed to have her and her family!

I will try to get some more updates up soon. Gotta get Mr Eli's next feed ready and get him moved to his room to get his oxygen situated. Sometimes he makes it thru a short nap ok, and sometimes not. Now is one of the not times! More soon.

Monday, July 12, 2010


Today was my appt with my OB. He has decided with the amount of bleeding that isn't wanting to really stop, and with my past history with all of the problems and surgeries that I've had that it's finally time. I will be having a hysterectomy on friday. He is hoping to leave the ovaries, obviously pending how they look once he's in there. But everything else will go. I'm nervous. He was able to get it schedualed quickly, which I'm happy and nervous about all at the same time. I am done having kids, but the thought of having a everything taken out is a bit...sad. I guess sad is the word. I'm not quite sure what the right word is honestly.
We are scrambling to get nursing covered for Eli as I will be in the hospital atleast overnight 1 night. The older 4 will be going to my parents, so nothing new for them! :) They are excited because there is a big party Sunday that they get to go too!
More updates soon.

Sunday, July 11, 2010

Sunday Evening Update

I've spent alot of time in bed or on the couch the last few days. This morning I woke up feeling a touch better, but that slipped away pretty quickly. I'm hoping that each day I keep feeling a touch better. The meds are slowing things down very slowly. They are also slowing down the effectiveness of my migraine meds (which is a side effect I was warned of), so that's made things even harder.

The kids are doing well. Bob was in charge Friday and Saturday, and my dad had them this morning, and then I had help here this afternoon. I took a nap this afternoon, literally fell asleep while on the phone. :)

Tomorrow is my appt with my OBGYN so hoping to find out what our next step is.

Friday, July 9, 2010

hospital for me

Its been a long day. Wednesday night overnight I started bleeding but figured it was a period. By Thursday it was fairly heavy. I woke up at 430am Friday morning pouring blood. I was shaky and chills and headache and all. Called doc said er. Er ran tests and did pap and pelvic. The blood was pooling so much they were hardly able to get the pap done. Had ultrasounds. All they know is there is a small cyst on my cervix. Unsure what is going on. Putting me on high dose meds to try to get the bleeding to stop. I've spent most of the day in bed sleeping. My body is sore and I'm weak from losing so much blood.
Bob has taken over and done a great job taking care of me and everything else.
More tomorrow as I'm sooo dang tired.

Thursday, July 8, 2010


We are home from KC. Eli completely lost it when we got home, and is finally resting comfortably. I think he was so tired and thrown off scheduale that it just all caught up with him.

We are now waiting to hear back on schedualing for all of his tests.
I will also be calling Dr Riva, pulmonologist, tomorrow as his breathing at night still sounds really rough. Sharing a room with him for the past 2 nights I was surprised at the amount he was still sucking in his breath during sleep. So hoping to be able to do the pulse ox monitor again while on the oxygen to see if we are on a high enough level.

The older 4 kids will be home in about 30 minutes. They spent the last 2 nights at my parents. Bob has worked 14hr days, so it was easier for them to stay there. Bob works 5hrs tomorrow and then is off on saturday! Ready to spend a bit of time with the family!

Wednesday, July 7, 2010

Motility Specialist

It's been a long tiring day. This morning we spent some time at Science City at Union Station. It was super cool and Tiff and I had fun playing around, Eli hung out watching! :)
Then it was off to Children's Mercy. We had lunch there and headed to his appt. We met with 3 nurses, the nurse practicioner and the doc. We were both really impressed with the doc. That's the good news. The bad news is we have no more information. He is unsure what's causing this, and it could be multiple different things, ranging from full esophogial motility to a problem or constricture in the esophogus. He is wanting all of the CD films from all of the swallow studies and then he wants to run a scope, and a few motility test. These will both be done here in KC at CMH in the OR. They will get them schedualed and call me. He still agrees with the NPO. :( If it is the motility, which the docs in Wichita think it is, then there is in fact no cure. SOOOO. We are basically still at square one. We don't have definitive answers. I sooo hate being at this point.
This evening we headed to the Plaza and had dinner at the Cheesecake Factory. Tiffany had been there before, but not me. HOLY COW. Our dinners were super yummy and we were both so full we had to get our cheesecakes to go and we also got the boys each a piece of cheesecake to take home to them! :)
Now we are going to curl up and watch a movie and eat our cheesecake! :)
More updates tomorrow!

Wednesday morning checkin

We are in KC. We got in yesterday around dinner time. Got situated in the hotel and grabbed dinner out. Eli was exhausted by the time we got in and fell asleep quickly after dinner!
This morning we are hanging out and this afternoon we check into Children's Mercy. I'm excited and nervous to see what the docs have to say. We are looking to see what we would like to do this morning in the mean time!
more updates as we know more!

Monday, July 5, 2010

monday afternoon

I've gotten quite a bit done today. I got the kids notebooks all updated, the kitchen cleaned, all of the laundry done, elis room organized and sorted out, the older 4 packed and eli about half packed. I also cleaned a bathroom and vacuumed the main level. Hoping to get a touch more done this evening and then I would like to just relax and watch a bit of tv tonight. We will be leaving early tomorrow to head to kc. Fun stuff.

More updates from kc.

Sunday, July 4, 2010

quick sunday check-in

These last 3 days have flown by. Its been so nice having bob home. Friday evening bob and I went on a date night..dinner and a movie. Some much needed time just the 2 of us. Saturday we decided to have a family day. All 7 of us spent the day at the cosmospher. We saw some of the shows as well. We went to a lab and they made fires and explosions, and launched rockets and such. The kids absolutely loved it. We made it home in time for dinner and family movie night. Today the kids went to church and then to their grandparents to hang out. Bob, eli, and I met them for a 4th of july bbq, then home for fireworks. All of our neighbors were out shooting off fireworks in the middle of the cul de sac at the same time we were. The kids really enjoyed it all.

Bob is working overtime all week. My kids head to my parents on Tuesday. Eli and I also leave for kansas city on Tuesday. Tomorrow I will hopefully begin packing everything and getting organized. So much to take.

More updates soon. I apologize for everything being short and choppy but its hard typing it all up from my cell phone. Soooo missing internet.

Friday, July 2, 2010

no smoking.........

Oxygen in use.
Well mr eli decided that he didn't have enough medical equipment.

He failed his at home sleep study. His oxygen was dropping below 80% during the night. The doc has immediately started him on oxygen for overnights and any nap lasting longer than 1 hr during the day. So we got this huge massive 5ft tall oxygen tank for at home and a 3ft tall oxygen tank that goes into a wheeled cart that looks like a golf bag caddy for when we are in kc and columbia and kc again. So we got 5 for this 1st trip and will need 8 to 10 for the columbia/kc trip. I need to rent a damn uhaul to travel with eli. We can't fit much more in his bedroom or walk in closet. I will have to post some pics soon.
More updates this weekend.